The Thinking Person's Guide to Autism

Restraint and Seclusion: In Your Child's School and Nationally

2012-02-01T03:00:00.000-08:00

Mary Brandenburg and Tony Brandenburg
www.theebrandenburgs.blogspot.com

Trigger warning: discussion of aversives, restraint and seclusion; mistreatment of disabled people

Recently, a story that has been in the headlines regarding treatment of students with disabilities concerned an autistic 4th grade boy in Kentucky. Reportedly, the boy smirked and threw a ball in class. The teachers' response to this behavior was to stuff him in a duffel bag and tie the drawstring so he couldn't get out. His mom was called to the school to deal with his behavior. She discovered him when she heard a voice calling from the army bag. Thankfully, he didn't suffocate, but who can measure the emotional trauma he suffered?

Another school in the news, the Judge Rotenberg Center, uses painful electrical shocks, restraint chairs, shackles and seclusion to control the behavior of people with disabilities. This center, which charges $200,000 yearly tuition, has lobbied extensively in Washington against legislation establishing regulations to protect students in schools. The Rotenberg Center is a $200,000 per year crime -- a "therapeutic" torture center conducting behavioral experiments on people with disabilities that has to be seen to be believed. Photojournalist Rick Friedman published a photoessay about the Center in January 2011.

The current headlines make it clear that all schoolchildren are at risk for seclusion and restraint in private and public schools across America, but it is also becoming clear that students with disabilities are disproportionately subjected to these abuses. It happens nationally; it happens locally; and it may be happening in your school district as it is in ours. Students with disabilities are often vulnerable to such abuses due not only to manifestations of their disabilities being viewed as "misbehavior" -- but also due to their ability to understand and then follow through on directions given to them. Aversive interventions are often used to force "compliance," as well as simply for the convenience of staff working with them -- to make their jobs easier.

On May 27, 2009, The Council of Parent Attorneys and Advocates (COPAA) issued a report, “Unsafe in the Schoolhouse: Abuse of Children with Disabilities” on the use of aversive seclusion and restraints on children with disabilities. The statistic that caught our eye was that that 68% of the students who were subject to seclusion or restraints were diagnosed with Autism or Asperger syndrome. As this particular sub-group in the population becomes more focused, both in their civil rights and their sheer numbers -- as of the 2008-2009 school year about 0.7% of the population of all students enrolled in US public schools -- they become more of an active political force to be recognized. They are increasingly mobile and vocal about abuses leveled at their peers. The use of aversives against this sub-group has not gone unnoticed.

There is very little research showing therapeutic or educational value for restraint or seclusion in the classroom. Further, aversives frequently trigger the fight/flight response, as well as long term psychological trauma. There are numerous documented cases of injury and death attributed to these practices. A report issued by the U.S. Government Accountability Office (GAO) in 2009 estimated that over 200 students have died as a result of school based seclusion and restraints between 1999 and 2009. Two hundred children, murdered in American schools. Indiscriminate use of aversives, by people untrained to provide the supports necessary to teach this population, is not an acceptable substitute for planned, positive, systematic behavioral support.

We, as parents, have seen first hand the lasting effects of the indiscriminate use of aversive interventions. This includes seclusion and/or restraints at school used on our own children. These are not isolated occurrences. The school district our children attend had had a track record of alienating autism parents. When a new Director of Special Education was hired in 2010, she commissioned an audit of the district's Autism Education Program, which was finalized during 2010-2011 school year. It may come as no surprise to families with experiences similar to ours that an area found to be in need of improvement involved behavioral planning and programming. This includes the necessity for intensive behavioral training for all District staff.

It has been months since the audit in our children's school district was finalized. Only now is there a task force being formed to address the deficits found in the audit. In the meantime, there is again turnover in leadership; our district will be hiring a new Director of Special Education. My question is: what is happening to special education students in our district in the meantime?

On December 16, 2011, US Senator Tom Harkin (D-IA) introduced a new bill, the Keeping All Students Safe Act (S.2020). This important piece of legislation seeks to establish minimum nationwide standards to protect schoolchildren from physical and psychological harm resulting from aversive behavioral interventions, including restraints and seclusion.

Key provisions of S.2020:

Prohibits seclusion -- in locked, or separate rooms/enclosures that a child cannot exit from.

Across the US, schoolchildren have been locked/blocked into closets, storage rooms, and/or isolated for hours at a time in separate rooms, denied access to their education, for often minor infractions, such as protesting, refusing, or even tearing their schoolwork. This practice was commonly used with my own child, without notifying us, and irregardless of whether there was a true emergency situation.

Bans physical restraints except in emergency situations where there is an imminent threat of serious bodily injury. Prone restraint is prohibited, as are any restraints restricting breathing.

In your child's school or district, what defines threats of serious bodily injury? Does it include "crimes" such as breaking or throwing pencils, tearing papers, pinches, slaps, kicks, screams, etc.? Or does the definition of "serious bodily injury" follow Title 18 of the U.S. Code?

Prohibits mechanical restraints such as locking students into chairs/devices, taping or tying them to furniture ... including stuffing students into duffel bags.
Bans chemical restraints such as medications used to control behavior that are not administered in accordance with a physician's orders.
Prohibits aversive behavioral interventions that compromise health and safety by inflicting physical and/or emotional pain to change behavior. This includes denial of food, water, bathroom use, as well as sensory exploitation such as spraying water or chemicals in the face, forced feeding, bathroom time outs, forced trash pick up, etc.
Requires that parents be notified within 24 hours of a child being restrained.

Past practices at our child's school, including incidents involving our child, were that parents were notified of restraints and seclusion being employed with students on numerous occasions often months after the fact, if at all.

Establishes numerous provisions promoting positive school climate and culture through positive intervention practices emphasizing conflict management and de-escalation, including school wide use of positive behavioral interventions and supports.

Something for all parents, not only parents of students with IEPs, to think about:

Does your local school practice:

Disciplinary measures such as: social isolation or public humiliation (such as placing students' names on the board), time-out rooms, guidance rooms, sitting students apart but in view of their peers, confining the student to a bench during recess, trash pick-up, or ridicule based on learning differences?
Physical punishment? (Examples: making students run laps, not as a normal PE requirement, but as a consequence of behavior; forcing children to write as punishment; witholding meals and breaks -- even for a few minutes; trash pick-up; or sensory assaults such as blowing a whistle in class in close proximity to students)
Over-correction? (Examples: making a student do a task over and over, even if it causes distress, or holding a child accountable for an action for days.)
Are these punishments or "consequences" at your child's school approved by the school district? Are the results long-lasting and develop positive outcomes? Do they seem reasonable?

So, parents, while we wait for the legislators, self-study committees, and the revolving door of administrators to figure out what to do, it is our role to start asking ourselves:

What is acceptable practice?
Just because it was done before, does it make it good practice now?
Is that the best we can hope for in the future?
Are the established schoolwide practices at your child's school educationally, ethically, and socially sound?
If it is unacceptable to treat your child this way, is it acceptable to treat another family's children this way?
Do some children 'deserve' to be punished differently and more forcefully because their behavior doesn't meet your standards of conduct?
If your child were to became disabled tomorrow, would you feel the same way?
Would you be OK if they shoved your child into a duffle bag?

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Editor's note: In the U.S., all children have a right to education at public expense. The rights of children with disabilities to be educated is (in part) protected by the national law, the Individuals with Disabilities Education Act (IDEA). What is missing is the students' rights to be protected from abusive disciplinary policies.

Among professionals, the discussion of "restraint and seclusion" as an ineffective response to students' behavioral challenges has been ongoing for more than a decade, as has research into positive behavioral supports. However, the discussion has been slow to move into every-day classrooms.

The "end restraint and seclusion in the classroom" movement started with the founding of The Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS) in 2004. A bill, the Preventing Harmful Restraint and Seclusion in Schools Act (HR 4247), was introduced to the House and passed with bipartisan support in 2010, but failed in the Senate. A similar bill, the Keeping All Students Safe Act (S.2020) was introduced in December 2011.

The following resources will help parents and allies to understand the need for the bill, and how to advocate for the bill's passage.

From the Editor -- Resources:

Council for Exceptional Children, The Council for Children with Behavioral Disorders Division: Position Summary on The Use of Seclusion in School Settings (July 8, 20009) http://www.state.ky.us/agencies/behave/misc/CCBD%20Position%20on%20Use%20of%20Seclusion%207-8-09.pdf
Council for Exceptional Children, The Council for Children with Behavioral Disorders Division: Position Summary on The Use of Physical Restraint in School Settings (July 8, 20009) http://www.state.ky.us/agencies/behave/misc/CCBD%20Position%20on%20Use%20of%20Restraint%207-8-09.pdf
Advocacy in Action: Ending Restraint and Seclusion in Our Schools http://www.advocacyinstitute.org/advocacyinaction/RestraitSeclusion.shtml
Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS)

http://tash.org/advocacy-issues/restraint-and-seclusion-aprais

TASH The Cost of Waiting http://tash.org/wp-content/uploads/2011/04/TASH_The-Cost-of-Waiting_April-2011.pdf
COPAA's Major Legislative Priorities: Ending Abuse Through Restraint and Seclusion: http://www.copaa.org/public-policy/copaas-major-legislative-priorities/ending-abuse-through-restraint-and-seclusion
Our Children Left Behind http://www.ourchildrenleftbehind.com
At Wrightslaw, action suggestions for supporting the passage of SB 2020 http://www.wrightslaw.com/nltr/12/al.0124.s2020.htm
Open Congress page for SB 2020 http://www.opencongress.org/bill/112-s2020/show

Pseudoscience Alert: Lyme-Induced Autism

2012-01-30T03:00:00.000-08:00

Emily Willingham
biologyfiles.fieldofscience.com

This post was originally written in September, however questions and assertions about "Lyme-Induced Autism" still occasionally percolate online. Please do feel free to counter such concerns with a link to this analysis by our TPGA Science Editor. -The Editors

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In the "this isn't science or news" category, a local Fox station story out of Sacramento. Let's take this bit by bit, shall we?

Headline: "Doctors find link between Lyme disease, autism"

Problem 1: The story isn't about "doctors" finding "links." It's about one doctor claiming to have seen children in her practice (more on that later) who are "cured" of their autism after treatment for Lyme disease after testing positive for it. In reality, the story presents only one example to support the claim.

Problem 2:The story doesn't show any "link" in the scientific sense of the word, at all. In fact, it produces no science whatsoever. Yet, the headline sounds so very, very sciencey, does it not?

Lede:

Although the mystery of autism continues to puzzle the medical community, some doctors are finding a link between autism and Lyme disease, which is called "Lyme-Induced Autism," FOX40 Sacramento reported.

See above. "Some doctors" appears to be "one doctor." And yet, they've named it "Lyme-induced autism." A search of PubMed for this new disease turned up exactly no hits.

Exposition:

Mary Hendricks, 19, was diagnosed with a severe case of autism at the age of 2, but also showed symptoms of digestive problems, skin infections and pain.

After 17 years of constant doctors' visits to diagnose the problem, a specialist told Mary's mother, Tina, that the key to diagnosing her daughter would be to diagnose her first.

In the past, Tina had suffered from colitis, fibromyalgia and flu-like symptoms.

The mother has a history of vague, non-specific symptoms. The child was diagnosed with autism at age 2.

Bring in the specialist:

Doctors ordered a Lyme disease test, which came back positive. Then, the same test showed that Mary also suffered from Lyme disease. After receiving the results, Tina recalled that before getting pregnant with Mary, she had two ticks removed from her skin and hadn't thought about it since.

If a child has autism from birth, many times it's because the child inherited an infection from the mother. I do think that Lyme disease, especially congenital Lyme is a cause of autism," autism specialist Dr. Lynn Mielke told FOX40.

What? Where are the data showing that "if a child has autism from birth, many times [italics mine] it's because the child inherited an infection from the mother"? This is an etiology that is absent from most scientific discussions of autism I've seen. It's not that people haven't looked into it. They have. And they found no link between maternal infections throughout pregnancy and autism diagnosis."No association was found between any maternal infection and diagnosis of ASDs in the child when looking at the total period of pregnancy: adjusted hazard ratio = 1.14 (CI: 0.96-1.34)."

That study did find that hospital admissions specifically for viral infections in the first trimester or bacterial infection in the second trimester were associated with an increased risk for an autism diagnosis. But nothing that fits the alleged pattern of a pre-pregnancy Lyme infection and autism.

In fact, as noted, there are no hits combining Lyme infection and autism as an entity in the literature, and there are only four hits on the two terms combined at all. Only one of these directly addresses it. This paper is from the journal of questionable questionableness, Medical Hypotheses. I was curious about the authors on this paper in this questionable journal, so I looked them up. The first author, Robert Bransfield, is president of the International Lyme and Associated Diseases Society, which is weird, because he's a psychiatrist. This association aligns itself with the viewpoint that current diagnostic testing for Lyme disease is faulty and encouraging people not to rely on test results for Lyme's (see point 5). In some courts, this insistence that the microbial presence of the causative agent in Lyme's is elusive enough to evade all testing and that some people thus suffer chronic, undetected Lyme is considered woo. He's referred to as a "Lyme warrior" by some (warriors are big in the woo world). There is a bit of a cottage industry around this one.

I also looked into the other authors. What I found is something that I've seen again and again: the hypothesis echo chamber, in which the only people who continue to talk about the hypothesis are the ones who devised it in the first place. And offer "tea recipes" as a cure. Or are allied with non-standard practices and have also published in Medical Hypotheses. Alt-Med conferences on chronic Lyme and/or autism, papers in Medical Hypotheses, LLCs. Does not impart confidence.

Mielke said she thinks that Mary contracted Lyme disease from her mother during the pregnancy, which played a big role in Mary's development of autism. He started intense treatment on Mary's Lyme disease, and the outcome was successful beyond their expectations.

"As we treat Mary for her Lyme, some of her check list autism symptoms are disappearing," Tina said.

"For her to wake up, smile and giggle and laugh .. we haven't heard that for years," added her father, Danny.

Miekle told FOX40 the severity of Mary's autism may mean she'll only improve minimally, but for the Hendricks even small improvements translate to huge miracles.

"I have had patients in my practice with autism, who when we treated their Lyme disease, their autism improved so much that they were no longer autistic," Mielke said.

Again, where are the data on these patients? Is it actually possible to become "no longer autistic" as a result of a treatment in the years beyond early childhood? A search of PubMed on various term combinations yields no such evidence, although some people do appear to develop out of the diagnosis.

And finally, the selected expert: The expert selected for this story is Dr. Lynne R. Mielke. This Dr. Lynne R. Mielke. This Dr. Lynne R. Mielke lists biomedical "treatments" for autism on her Website that include hyperbaric oxygen and detoxification, which includes intravenous infusions of chelators ("heavy metal detoxification agents"), and both treatments may actually do harm. Oh, and there's a page labeled "vaccine issues" which offers up equivocation about vaccines, against the evidence-based guidelines of the American Academy of Pediatrics.Based on what she writes on the site, she is a DAN! (Defeat Autism Now!) practitioner. In other words, this is wall-to-wall non-evidence-based therapies for autism. Is Lyme mentioned on the site? Why, yes, it is. From the page:

In general, at this time Dr. Mielke will not be the prescribing doctor for the complex antibiotic and herbal protocols that chronic and acute Lyme patients need. She will refer patients to the appropriate ILADS physician for that. However, she will work closely with those doctors, making sure that the Lyme patients have all of the additional therapies that they need for an optimal treatment outcome.

Echo chamber and logrolling in our time, anyone? The choice of this "expert" with a clear dog in the hunt for input about a putative Lyme-autism link was a massive fail.

The bottom line: This "news" story with its sciencey headline misses the science entirely because there is none. It uses an "expert" with a clear dog in the hunt -- her clinic offering non-evidence-based autism "treatments." It cites "doctors" when only one is quoted. It uses a single case to illustrate a broad, unsupported statement. It offers zero counterpoint or information from anyone about (a) whether chronic/undetected Lyme exists or (b) whether there is any science supporting the link asserted in the headline. It offers nothing in the way of a scientific study to support what it says.

In other words, "fair and balanced"? Um, no.

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A version of this essay was previously published at biologyfiles.fieldofscience.com.

The Misguided Movement to "Cure" Autism

2012-01-27T03:00:00.000-08:00

Kurt Gatejen
www.pseudocognitive.blogspot.com

For over two decades, my wife and I have ridden an emotional roller coaster of the sort quite familiar to most parents of special needs children. I’m not going to detail those experiences here for two reasons. First, that topic has been covered extensively all over the web, and second, I’m averse to expressing in a grand chronological and developmental scope events and feelings that may be completely misinterpreted as some kind of “woe is me” tale.

I don’t begrudge anyone's need to write about their emotional struggles; it can be very therapeutic for some people. While I may on occasion comment on particular difficulties in the lives of families with autism, I will not ever write an epic saga of that nature. The truth is, despite the many challenges we’ve encountered (and the seemingly intractable problems that loom in the future), neither my wife nor I would ever trade for a more stereotypically storybook family narrative. The joys and rewards of raising our two sons, both of whom have autism, have far outweighed the difficulties and heartache along the way. Instead, I’d like to address the issue of “curing” autism. I’m not talking about treatment or prevention, although those are certainly fertile topics for discussion as well. I’m specifically referring to the opinion held by some that autism is something we should seek to remove from people who have it. Got autism? No problem; we’ll just take it away and you’ll be ... well, you’ll be someone without autism. Yeah ... someone, but who?

Cure autism? If by that you mean taking people who have autism and somehow “fixing” their neurology in some way so that they no longer exhibit any of the mental and behavioral traits associated with autism, I have one question (ignoring the obvious one of whether it’s even in the realm of possibility): Why?

My sons are who they are due to variables both genetic and environmental far too numerous to count or fully identify. Their autism isn’t what they are; it’s part of who they are. I love my sons. Why would I want to change who they are? Would they want to change, to the degree that their personalities, for lack of a more precise term, are dramatically altered? Would they choose to give up some of their unique qualities, interests, and ways of seeing the world that are influenced by their autism?

My oldest son, to the best of our knowledge, isn’t able to understand the question. What would the cure advocates propose for him?

DSM 5 Autism Criteria: Clarifying Impact, Taking Action

2012-01-25T03:00:00.000-08:00

Interview with Dr. Gil Tippy
Clinical Director of The Rebecca School, Manhattan, New York
www.drgiltippy.com

How are the DSM criteria for autism changing? From the official site:

"A single spectrum disorder [i.e., folding in Asperger Disorder and PDD-NOS] is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints.”

"Three domains become two:

1) Social/communication deficits
2) Fixated interests and repetitive behaviors

"[because] Deficits in communication and social behaviors are inseparable and more accurately considered as a single set of symptoms with contextual and environmental specificities."

We spoke with Dr. Tippy about what the proposed revisions to the DSM 5 will mean for Autistics, autism families, and autism professionals. Dr. Tippy also outlined actions everyone in the autism communities can take to prevent these changes from cutting off critical autism services and support.

Why do you think people are so concerned about the DSM 5 changes?

It's important to remember that these changes are not new news. They've been in process for the past four years, and these guideline changes have been posted publicly for the past 18 months. What has happened is that Dr. Fred Volkmar, who used to be on the committee but left the working group, decided to do a study to see how many kids diagnosed under the old criteria would meet the criteria for the new Autism Spectrum Disorder diagnostic category. His study concluded that some of the kids who previously were diagnosed with PDD-NOS and Asperger Disorder would no longer meet the criteria for Autism Spectrum Disorder. The working group that is developing the new criteria felt that [Volkmar's] study did not take into account that a good diagnostician, a good Clinical Psychologist for instance, would look carefully at the child in light of the new criteria, and then diagnose appropriately.

I have to say I agree with both sides of this disagreement. I think that no child or adult, previously diagnosed with an Autism Spectrum Disorder by a thoughtful clinical professional should worry that he or she, or their child, will not be diagnosed appropriately with the new criteria for Autism Spectrum Disorder. However, I do believe that there is plenty of reason to worry, and for raising the alarm, Dr. Volkmar is to be thanked.

How will the changes to the DSM 5 affect eligibility for an autism diagnosis and services? That seems to be folks' concern, based on Dr. Volkmar's report and his statement about nipping the "autism surge" "in the bud."

The changes are not going to affect people who are diagnosing or treating people with autism. A good diagnostician is careful and thoughtful, they should see the overall picture of a person, their symptoms. The new criteria urges talking to family and other treatment professionals, but -- again -- a good diagnostician should already do this.

People won’t necessarily lose services because of the change in criteria. If, for instance, you had Asperger Disorder, you wouldn't lose support -- you would lose the Asperger diagnosis and instead have an autism diagnosis, on the less severe side of the spectrum. Same with PDD-NOS -- if you currently meet the criteria for that diagnosis, you'd meet the new criteria for an autism diagnosis. It’s worth mentioning that many kids and adults with Asperger's and PDD-NOS aren't getting appropriate services right now under the current diagnoses!

The problem is not with the changed definition or service providers, it's with the people paying for services. People who have services now may lose them because insurance companies could use the new guidelines to disqualify people. This makes sense; corporations' missions are about cutting costs; they may use the new criteria to say, "Well, you don't have a psychiatric disorder." While it's reasonable for companies to cut costs, it is not reasonable if it unfairly affects quality of life.

It all depends on the way in which the federal government makes these criteria part of the Affordable Health Care Act, which will be finalized by 2014. What is critical, where we need to take action, is in letting our state and federal legislators know that we vote, that we are watching this issue closely, that we demand appropriate coverage for autism, and that we will not compromise.

The federal government will be watching key states like California and New York closely to see how they legislate autism coverage -- and will use those rulings as the basis for its decisions. Once everything is formalized, local school boards will respond to state guidelines, which will in turn be based on Federal guidelines. So, it's especially important that we all take action now at the state level, especially those of us who live in key states.

Everyone needs to use their voices, needs to get together and say, "You can't exclude us! You can't legislate us out! We have power!"

What will the new criteria mean for adults?

It affects all ages; it doesn't matter if you are 60 or your child is 18 months old and starting to show signs of autism.

What are the goals of the DSM 5 Task Force with regards to autism and the new criteria?

I think the intent of the DSM 5 task force is to make things cleaner and easier for the people who will be using the criteria. This may be especially useful for diagnosticians with less experience. (Task force member Catherine Lord has also stated a goal of ensuring "...autism was not used as a 'fallback diagnosis' for children whose primary trait might be, for instance, an intellectual disability or aggression.")

I work in a school, I know there are other forces at hand -- and if you don't speak up, people who don't have you or your child's best interests at heart will be making decisions that affect them. We have to speak up, we have to do our own lobbying -- because you know that other special interest lobbyists are going to be trying to affect policy as well.

I don’t believe that these clinical diagnostic guidelines will affect one thing, not until state legislation passes, at which point federal guidelines will be based on the new state guidelines as an example of what's reasonable. Once the Affordable Health Care Act becomes law in 2014, federal legislation will determine who gets paid, and who gets treated.

People need to understand that the DSM 5 will be published, the issue is how people are allowed to interpret it. Again, advocacy groups need to get out in front!

What do the new severity scales mean? [Follow link, click Severity tab]

The new criteria will have a scale for social/communication, and restricted interests: Level 1 is "Requiring Support," Level 2 is " Requiring Substantial Support," and Level 3 is "Requiring Very Substantial Support."

That's where we need to lobby -- we need to make sure insurance companies aren't allowed to split people off due to their severity level, or say "We're not going to pay for a level one, for an 'awkward adult.'" This is especially important once young adults get out of school and enter society.

Officials get elected based on promises to cut costs -- what if they say, "We'll restrict services to Level 3! That's how I'll balance the budget!"? People are right to be worried!

What is your overall message about the DSM 5 revisions and autism?

The proposed changes in diagnostic criteria are worth being worried about, but not because the clinicians will exclude people from treatment; they will continue to diagnose and treat appropriately. If you, or your son or daughter has an appropriate diagnosis on the Autism Spectrum now, responsible clinicians will find that you or your children meet the criteria for Autism Spectrum Disorder under the new guidelines. Again, the place where we need to put our energies is in advocating with our elected officials on the state and federal level, to not allow our children to be excluded from appropriate treatment based on the new severity scales associated with the diagnosis.

The time to do this advocacy work is now, as health care legislation is in the works, and powerful lobbying groups will go in and speak to your legislators if you don’t. Parents and people with the diagnoses need to be the people who are directing this legislation. If you do not feel like you can go directly to your representatives, go to the not-for-profits you support who hire lobbyists to influence legislation. Tell them that you do not wish to have them advocate for one behavioral treatment or another, but that you want them to advocate for appropriate services under the new law. Insist with them that they need to follow your wishes, or you will no longer support them financially. There is power in numbers, and if we all joined together we could assure a better future for ourselves and our children!

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Find your federal representatives by zip code at www.house.gov
Find your state representatives via thomas.loc.gov/home/state-legislatures.html

Additional reading:

Dennise Goldberg, Special Education Advisor: Proposed DSM-5 Changes and Autism: Ed vs. Med
Melody Latimer, ASParenting: DSM-V Under Attack
Allan Frances, M.D., Psychology Today: DSM 5 Against Everyone Else
Judith Warner, Time: The One Question We Should Be Asking About the New Autism Definition
Sullivan, Left Brain/Right Brain: The DSM 5 and Autism

Touch: Autism and Special Needs on Fox TV

2012-01-23T03:00:00.000-08:00

Fox TV's new Kiefer Sutherland series Touch premieres in two days, on Wednesday January 25th. We're intrigued, and watchful. The series revolves around a non-verbal child, Jake, who understands numerical patterns other people can't perceive -- and his father Martin's attempts to understand not only what Jake is trying to communicate, but Jake himself.

From the series description at Fox.com:

Blending science, spirituality and emotion, the series will follow seemingly unrelated people all over the world whose lives affect each other in ways seen and unseen, known and unknown. At the story’s center is MARTIN BOHM (Kiefer Sutherland), a widower and single father, haunted by an inability to connect to his emotionally challenged 11-year-old son, JAKE (David Mazouz). Caring, intelligent and thoughtful, Martin has tried everything to reach his son. But Jake never speaks, shows little emotion, and never allows himself to be touched by anyone, including Martin. Jake is obsessed with numbers—writing long strings of them in his ever-present notebooks—and with discarded cell phones.

Some folks are already skeptical. Alyssa Rosenberg at ThinkProgress is critical of series co-creator Kring for "inventing a magical alternative to autism," and Ellen Seidman at Parents.com says:

I like it in concept because it’s a TV program about a kid with special needs, which isn’t very common (understatement alert). I don’t like it concept because I’m concerned it’s going to take the focus away from the amazing reality of our kids—something many people still don’t get. And, count on it, some people are going to think kids with autism actually can do this, feeding into the stereotype of savant abilities.

Matt Web Mitovitch of TV line reports that series star Sutherland believes Touch will highlight the potential of those with autism, and the need for the rest of society to try to better understand autistics:

“The Danny Glover [professor] character is interesting,” says Sutherland. “He believes that we have misdiagnosed a group of people that actually are at a much more advanced form of communication, but because we don’t understand it we’ve diagnosed them with what we can best understand.”

That exploration of what autism is and could be was born of the fact that [series co-creator] Kring has a son who lives with the condition; as such, he’s taking care to see that Touch‘s fictional aspects are founded in scientific fact.

Autism is no longer mentioned on Fox's official Touch site, but Fox secured an autism and special education expert, Joanne Lara, as technical consultant on the pilot. Joanne also advised on the role of Jake, the eleven-year-old protagonist. We spoke with Joanne last week; here's the part of our conversation that centered on the series' special needs themes.

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In developing the character of Jake, did the writers or actors consult with people who have autism themselves, like Stephen Shore, or any of the autistics you know?

No. The head writer knows his way around this territory, that's all I'll say. It's very close to him. He doesn't need to confer with Stephen.

My role was more about "are we doing this right?" It wasn't as if the writers said, "Well, what do you think we should do now, Joanne?" They wrote it, then presented it and said, "Look, does all of this line up correctly? Is this the way a social worker would come to a house or an apartment in New York?"

It was also a technical advisor role; I'd be the one who did due diligence in talking with a social worker in New York, making sure they were wearing the right badge, or asking them how they dealt with runaways -- did the supervisor come in? That's important because each state is different in the way the deal with these matters. Those aren't necessarily the kind of questions that Stephen Shore could answer -- you need someone like myself who's going to spend half a day tracking down someone and asking, "If you find a kid like Jake at the top of a cell phone tower in New York somewhere, how is everyone going to respond?"

You also worked on making David Mazouz's role of Jake more believable?

I gave him a marble, based on my background in method acting, where it's all about an article -- because it would be a realistic piece of property, something he would actually hold. If he didn't have a disability, he would keep it in his pocket, and the moment he touched it, that's when the physicality would come in, in terms of "this is how I walk when I hold this marble." That's really method acting. So it worked for him as the character, and as an actor.

Is it true the creators didn't want this to be a "doom and gloom" presentation of autism? That instead this kid Jake has special skills, and it takes patience and understanding -- an understanding of the potential of his abilities -- to save the world?

Exactly -- using what we know, and what the head writer knows, as a template for a do-gooder little guy with super powers. He could be an action figure hero! But he's only eleven, and he doesn't talk. It's quite brilliant, I think. It's really something. I'm pinching myself that I got to be involved -- I was called and told only that it was a pilot -- but then it turned out to be Kiefer Sutherland and all these people. I was so pleased that they chose me!

Does the show talk at all about why he has autism, or is it presented straight -- this is a kid who needs support, and his father is figuring out how best to support him?

It's a given that he already a disability. They don't say the word "autism." They did at first, when I was on the set -- but I heard they reshot and re-edited that scene, so I'm not sure how they're going to reveal that -- all we know is that he has a disability, and that he's a savant with numbers.

The way that we know there's a problem is because social services has been called, because maybe this guy isn't such a good father after all. That's the setup of the pilot. You have to have a problem to have a solution, and the problem is that maybe Kiefer Sutherland isn't such a good father if he lets his son climb up cell phone towers.

It's not like Parenthood, where the first line is "Oh, he has Asperger's! What are we going to do?" It's not like that at all. It's more like "there are some problems here, let's figure them out, let's figure out why he would climb up to the top of a cell phone tower! Let's figure out why everything he does has to do with numbers!" And I've known real numbers kids, I've worked with them -- sort of like the [coincidentally named] autistic savant boy Jake recently interviewed on CBS -- I'd like to see how they're doing now with their numbers, and how that played out.

At TPGA, we try to help people understand that autism can be OK, it's a different way of being -- and we also want to give them role models, show autistic people who don't just play a role in neurotypical characters' journeys of self-discovery. It sounds like Jake is a fully-fleshed out character in his own right, who carries as much weight as anyone else?

Oh yes, David's the star. He and Kiefer are the stars. And you're right, in Parenthood it's the other, the parents are discovering themselves through their child -- that's not what happening here. The child is the one climbing up the tree, and we're the ones who are throwing the rocks and bringing him down.

So it sounds like he's the one in control -- and the problem is that everyone else needs to catch up with him, and understand him?

That's right -- that's exactly right -- and that's the message.

That could be applied to autism in general!

Well, like I said, the head writer really knows his way around this territory. I think that's not by accident. I think that's the way he planned it, that's what he wants. And there is where the interest is going to lie, not only for individuals and families and people who work in the field, but also the general public is going to go "Wow, I know someone who has a child with autism, but I always thought it was something different…" That's an important message for everyone -- for the world!

So it's showing that autism is not just Max in Parenthood, it's not just Gary in Alphas, it's not just Rain Man -- there are kids like Jake who are non-verbal but incredibly intelligent -- so this could really add to the neurodiversity tapestry.

And not to mention the individuals themselves who are non-verbal and are watching it. Hopefully they'll see this and think, "Finally, someone's talking about me!"

----

We'd like to know what Autistics, families and friends, and professionals think of the show. You can comment about the preview below -- and if you watch the pilot, come on back and let us know what you thought of that, too.

A Culture of Abuse: Autism Care in France

2012-01-20T03:00:00.000-08:00

David Heurtevent
www.supportthewall.org

France's population is about 65 million. Assuming an autism prevalence of about 1 in 110, approximately 590,000 autistics live in France. The French education system contains about 13 million students in a two-tiered educational system: most children attend schools overseen by the Ministry of National Education, but approximately 100,000 students found to have significant disabilities -- very few of whom have autism -- attend schools run by the Ministry of Health. Most autistics are not educated at all.

Significantly, childhood psychiatry in France is dominated by psychoanalysts, who (broadly speaking) view childhood behavioral issues as evidence of disturbances in the relationship between the child and the parents, particularly the mother. Psychoanalytic treatment therefore is not behavioral or educational, but seeks to change the child's emotions. According to Chantal Sicile-Kira, whose autistic son was born in France, autistic children "had no right to an education. Instead, they were enrolled in day programs on hospital sites, where they were treated with psychoanalysis. Parents had no right to visit the day program, nor did they receive any communication about what went on during the hours their child spent there."

For more information on autism in France see Wrong Planet's Autism in France: Psychoanalysis, Packing, and Other Travesties: Why it Matters and New York Times' Film About Autism Treatment Strongly Criticized in France.

Trigger warning: Explicit descriptions and photos of abusive treatment of autistic children and adults. -LD

Many of you readers who are not citizens of France may wonder why you should care about autism in France, and why I am inviting you today to help we French address the problems with autism in France. After all, foreign relations policies of unilateral interventionism and democracy promotion have failed miserably during the last decade, and the current economic crisis favors the idea that citizens of each country to think only of addressing problems within their own countries.

Instead, my belief is that the “moral duty to intervene” exists. In France, Human Rights infringements for autistic people are severe and persistent enough to mandate foreign intervention in the debate.

France is far behind other European countries in support of their citizens with autism, a problem that has a long history. In 2004, the trans-European autism organization Autism Europe brought France's autism policies to the attention to the Council of Europe, which condemned the French policy of educational segregation for autistic students. Successive autism plans by the French government have had little effect on improving the situation. One notable failure of each of the plans has been a complete disregard of the need for accurate information. None of the plans have included a requirement to collect any data. Thus, there is a real lack of data on autism in France, which the French government has acknowledged is a real barrier to effecting significant improvement in autism services.

What we do know: In France, 80% of the children diagnosed with autism spectrum disorders (ASD) do not go to school at all, according to government data. Contrast this figure with the United States, where the Individuals with Disabilities Education Act (IDEA) requires all public schools to provide education for all students. In the United Kingdom, where school is mandatory, a study by the National Autistic Society revealed in 2006 that exclusion from school for children with autism is 1 out of 5.

The few French children who do go to school often receive little support and rarely attend school more than a couple of hours per week. Two recent examples highlight this fact:

1) On January 3, 2012, the French government-controlled TV channel France 2 aired a report on a family living near Paris. Their eleven year-old son Ryan had only received 72 hours of schooling in 10 years, until last year! This year, after a previous TV show and after legal threats, a special education class accepted him, but only for 90 minutes of class time per day.

2) On January 4, 2012, a middle-school teacher on French National Public Radio (France Inter) discussed an autistic child assigned to her classroom, who had a classroom aide. The teacher had received no training to support this student. The classroom aide was only in the classroom 12 hours per week with that child (of a total of about 28 classroom hours). Further, the Ministry of Education had decreed that the aide would not be allowed to work with him for more than two years as they feared a bond developing between the aide and the child!

Clearly, the school system does not want children with challenging behaviors.

Turning to adults, French government data on psychiatric care reveals that 60% of the persons held in isolation units in psychiatric wards for more than 30 days are diagnosed with ASD. As Danièle Langloys, President of Autisme France said during the congress of the organization on December, 3 2011: “This figure does not include the persons who are undiagnosed, so the real figure could be much higher.” This raises the question: Why must autistics be held captive and isolated from others? Institutions and psychiatric treatments are the norm in autism in France from birth to death.

In the French medical system, most primary care providers are general practitioners (GPs). These physicians only receive one to two hours on ASD during their entire training. The physicians who are psychiatrists are still using outmoded diagnoses, such as “infantile schizophrenia,” “infantile autism,” or “infantile psychosis," even though autism organizations and the French Higher Health Authority are recommending better definitions of autism. However, there is a very significant resistance to change. Dr. Jacques Constant, a child psychiatrist, involved as an expert to the French Higher Health Authority, recently declared on France Inter: “It is true that many psychiatrists remain attached to old views, including classifications ... The situation is not perfect but relatively positive changes, in my opinion, have been made.”

Compared to American children, French children are diagnosed much, much later. The lack of training for professionals, and their psychoanalytical worldview advocating “laissez faire” often result in extremely late and inaccurate diagnoses. It is commonplace to meet parents whose children were not diagnosed until the child was 6 to 10 years old. The typical waiting list for diagnosis is two years.

Turning to other professions that could provide services to individual and families affected by autism, there are very few psychologists with autism-specific training. For example, in all of France, there is only one educational program that offers a master's degree in behavioral analysis.

The French government provides no funding to schools based in Applied Behavioral Analysis (ABA). As a rule, such schools are funded by parents. By contrast, child psychiatry treatments are funded by the French National Health System. France currently has only 23 institutions (not schools) with ABA programs for 700 children, whereas the need is at least 8,000 new places per year, based on birth rate and prevalence estimates. The adult situation is far more difficult. Marcel Herault, president of Sésame Autisme, a national organization, recently declared: “There are an insufficient number of places for adults with autism. It is a tragedy.”

This tragedy of bad care does not end there. Now, it is time to introduce three real human rights issues: extensive discrimination, a “treatment” known as Le Packing (which could also be called “torture”), and exile to Belgium.

Adults with autism face extensive discrimination. The most common is the lack of access to education and training for employment. Most adults with autism are institutionalized with low self-care skills as a result of failed educational policies. Even if they have the chance of being higher functioning (including most with Asperger’s and PDD-NOS), autistic adults are discriminated against by employers. I myself faced the issue numerous times with employers, despite my three master's degrees. Worse, persons with autism often get denied access to resources dedicated to autism! “It is outrageous that institutions created for autism treatment do not accept persons with autism. Obviously I do not single out individual cases, but generally speaking there are folks that are trying to direct children or young persons with behavioral problems toward the exit. This is unacceptable to me,” recently declared Marcel Hérault, President of Sésame Autisme.

Autistics are subject to invasive care and conditions favoring sexual abuse. The best example of abuse in France is Le Packing, a barbaric practice which consists of wrapping autistic children, naked or stripped to their underwear, in cold wet sheets (at 50°F, 10°C), like mummies. Some teams even put the sheets in the refrigerator before using them. (Read a detailed description and critique of Le Packing at Support the Wall.) Today, in 2012, this technique is still used in 300 establishments in France. Le packing has been used on children with autism for over thirty years despite having never been subjected to any evaluation other than a few adult case studies.

In October, 2010 at the Ninth International Autism–Europe Congress, 18 of the world’s leading autism researchers signed a consensus opinion, “Against Le Packing: A Consensus Statement”

We have reached the consensus that practitioners and families around the world should consider this approach unethical. Furthermore, this “therapy” ignores current knowledge about autism spectrum disorders; goes against evidence-based practice parameters and treatment guidelines published in the United States, Canada, United Kingdom, Spain, Italy, Hungary, and Australia; and, in our view, poses a risk of preventing these children and adolescents from accessing their basic human rights to health and education.

There has also been an active on-going campaign by of the organization Vaincre l’Autisme, Manifest International Contre le Packing (International Manifesto Against Le Packing). Nevertheless, France has refused to ban this practice.

Because of the lack of educational opportunities and the risk of abuse, many parents with autistic children choose to exile their children to Belgium, so that they can receive better care. (Belgium has 3 official languages, French, Dutch, and German. About 40% of Belgian citizens have French as their first language.) Recently, Radio Télévision Belge Francophone (RTBF) has estimated that there are 3,500 to 5,000 French citizens with disabilities who are “medical refugees” in Belgium. Some children cross the border every two weeks to go visit their parents in the Paris area. Many of these children attend public special-education schools in Belgium, financed by the Belgian government. More surprising, France has created some offshore centers in Belgium to host its own citizens, which are financed by the French National Healthcare System. As both countries are starting to feel serious financial turmoil, it is uncertain how this situation will unfold. Until recently, demand for schooling from French nationals seemed to be on the rise in Belgium. Yet France recently signed an agreement with Wallonia, the French speaking part of Belgium, probably in an attempt to legalize the situation and to curb the process that could be characterized by some as a population displacement of “medical refugees.”

It has been eight years since the resolution against France at the Council of Europe and three years since the start of the campaign to ban Le Packing. The situation of autism care in France has yet to change. At best, the French Government is starting to feel the heat and tries to cover its tracks by declaring 2012 the year of National Attention for Autism, by creating a study group at the French Parliament and by issuing some reports. Autism organizations are weak because they accept funding from the government for awareness campaigns through a new entity, Collectif Autisme, and because they are fragmented. In reality, organizations have already been told that no additional funding will be available due to the current economic crisis. In this context, there is little hope that the humanitarian situation will change unless the international autism community becomes involved.

On January 26th, Support The Wall will launch an international petition to ban Le Packing, and to pressure France to significantly improve autism care rapidly. This petition will be launched from a live event in New York City and will viewable on our website www.supportthewall.org

Thanks to your support, self-advocates and parents will prove that a viable international autism community can exist, and that wherever we live basic human rights must be respected.

We shall never accept being treated as second-class citizens. It is past time to promote change in autism at the international level. It is now time for the international autism community to step in and to say enough!

If You Can't...

2012-01-18T03:00:00.000-08:00

Chavisory
www.chavisory.wordpress.com

I got to open my presents early for Christmas this year, as my mother was going out of town to see family. I told her I hadn’t had a chance to wrap hers yet, so she could open it when she got back Christmas night.

We didn’t get to finish opening presents that night. We had a yelling match about the true nature of the autism spectrum.

I was diagnosed with Asperger Syndrome a year and a half ago (though I’d known the truth for several years previously), which I guess that most people in my life probably know by now because I decided that it was part of my life that I wasn’t going to make any particular effort to hide, because I had nothing to be ashamed of. I really have no idea what people think of me as a result, because I stopped concerning myself at a pretty early age with what people think of me. Because living in thrall to the opinions of people who don’t have to live your life is no way to live at all.

Anyway, so it had started to feel like old news that I was autistic. I’d started to settle in to living as a whole person, without an emotional double life. But then, I was rather emphatically asking my mother not to describe a young cousin (currently in the process of being evaluated for autism himself) as not having a personality, because such language is often used to justify all kinds of mistreatment and prejudice against us, besides not being true.

“But you’re not autistic.”

Which is where my brain froze up. Because honestly, I don’t know what else I am anymore. Before I understood what autism really was, I didn’t know what I was at all, except for lost and completely alone in the world.

“I don’t think of you as really autistic.”

This is the hissy fit I had in my head after that conversation, after my verbal skills were drained and we’d both given up. It’s no longer directed at my mother (we had a good talk the next morning), but at the thinking that I was shocked to find is still common: that real autistic people don’t have personality, native intelligence, skills, or potential; and that anyone who’s achieved any degree of independence or success isn’t really autistic.

Because where’s the room in that thinking for things to get better for any autistic people?

If you can’t see me as autistic, then you need to revise your view of autism to take into account real people.

I am “not like that kid” who runs around screaming, or who can’t communicate at all, because I grew up. And because we’re all different people, who cope with unique profiles of challenges and gifts in individual ways. I am “not like that kid,” because, to be perfectly literal, I am not that kid.

We are as unique as the stars. They say autism is a spectrum, but I don’t think that really describes its variety and complexity well. It’s not a simple progression from mild to severe. I often say it’s more like a constellation, or galaxy (which TPGA editor Liz Ditz pointed out to me has the added metaphorical benefit of being a 4-dimensional construct; it also changes through time for every person). There are people with far more severe problems with independent living than I have, who are smarter, better writers, incredible artists, or just incredible people.

I am far more fortunate than many, and not as lucky as others. I know this; you don’t need to rub my nose in it. I know that I’m blessed beyond all reason.

If you can’t think of me as autistic because you see me as a competent adult, you didn’t know me as a child.

If you can’t think of me as autistic because I’m verbal and communicative … those things are actually features of Asperger Syndrome, a form of autism. We still have major communication difficulties and differences.

If you can’t think of me as autistic because I’m so good at my job … please consider that it’s a job that largely entails “keeping track of everything that no one else wants to” (to paraphrase the college instructor who introduced me to stage management as a career option), and working with a collection of people who are also socially marginalized, passionate, obsessive, highly sensitive, and reliant on consistency and repetitive and ritualized behavior. (Actors were some of the first people to seem to want me the way I was.)

If you think I can’t be autistic because I’m so good at multitasking, well, I’m not. Good at multitasking, that is. What you see when you see me do my job is the result of copious amounts of planning, plotting, mental choreography, scripting, queuing, pre-thinking, making spreadsheets and flow charts, preparation and learning from experience, and excellent assistants. (Stage management and life with Asperger’s are both centered around dealing with a quantity of data that a single human being is not truly equipped to handle.)

You get good at anything you do for a long time. I got good at my life when I stopped trying to live one that I realized I could never have.

I’m autistic. There’s not another or a better word for what I am. It’s one I searched long and fought hard for. It is home. It is the reason I wake up in the morning knowing what universe I belong to, and go to bed at night knowing I’m not alone in it.

If you can’t think of me as autistic, it’s not so much for my sake that I care, but if it’s because you can’t believe that autistic people can be intelligent, kind, good-humored, good friends, good at our jobs, capable of love, highly-skilled or talented, complete human beings? Then you take chances for jobs, education, friendships, and quality of life away from autistic people who are a whole lot less lucky than I am.

Having Words with Autism

2012-01-16T03:00:00.000-08:00

John J. Ordover
www.sohodigart.com

In this country we like to fight things, whether it's the Fight Against Poverty or the Fight Against Drugs or even the Fight Against Gentrification, we sure do like to fight. We fight cancer, we fight child abuse, we give out soup to fight hunger, we fight, and fight, and, as on The Simpsons, we fight fight fight fight fight!

So, is it wrong to say we are fighting autism when we stand up for those on the spectrum? My wife, who has an Asperger's diagnosis, says it is. Others agree; others disagree, as a Google search for the term “fight autism” brings back over half-a-million listings. Here's the word on why this phrasing issue is important to me and to others trying to raise money to help people on the spectrum:

At 6pm on February 16th, 2012, at 6pm, at The SoHo Gallery for Digital Art, 138 Sullivan St. New York, NY 10012, www.sohodigart.com, the mothers at my son's school for autistic children will be presenting HOT SOUP/COLD NIGHT -- a fund-raising event featuring bread, beer and home-made soup straight from their kitchens. Just the thing for someone trudging past the gallery door along a snowy New York City street. You also need to know that we're Jewish and my son's school is in a predominantly Jewish neighborhood in Brooklyn. You'll see why in a second.

To maximize the return on our investment of time and money, we of course want as many people as possible to hear about our event, show up and buy soup. That means sending out a press release. Over my years in publishing and marketing I have written hundreds of press releases so I didn't expect to run into any difficulty on this one, but I did, because I know in my marketer's heart that the catchiest phrase to put under the title of the event is:

JEWISH MOTHERS FIGHT AUTISM WITH CHICKEN SOUP

That is, in my opinion -- which I respect highly -- the phrase that pays; it's punchy, it scans nicely, is neatly balanced and fits easily into the space available for a headline. It falls into the “fight cancer/fight drug abuse” phrasing that the media expects. When I proudly told my wife what I had come up with, she told me (as, full disclosure, did the editors here at TPGA with whom I consulted) that “FIGHT” was not an appropriate term to use. I was also told the terms “BATTLE” “CONFRONT” and “FACE” were inappropriate, as was any term that implied autism was something to be fought against. That we fight for people with autism, not against autism itself, and that my usage was offensive. The problem is

JEWISH MOTHERS FIGHT FOR CHILDREN WITH AUTISM WITH CHICKEN SOUP

is clunky, too long, and does not conform to the expected phrasing. The same problem came up with all the many -- very many -- “fight for” rather than "fight against" variations I tried. If I used any of them in the press release, the story would be less likely to be picked up, we would get fewer people at the event, bring in less money for my son's school and those places that did cover it would likely come up with the same offending phrase themselves.

Stumped on how to serve both masters -- the need to market, and the need not to offend the autism community, I reached out to my friends who are professional marketers; they, too, were unable to come up with a punchy phrase for the release using a “fight for” mindset (although one suggested changing the title of the event to SOUP FOR YOU! which might yet happen).

I'm sure I'm not the only one facing this particular quandary. All over the country - and for that matter the world -- there are people sitting down to write a press release for their autism fundraiser; I am not the only one who needs to get word out to make their fundraiser a success, and not the only one banging my head against a keyboard trying to decide whether to go with phrasing something so as not to offend the autism community or go with something more likely to be covered by the media.

So what do I do? I can think of three alternatives:

Going with my original, more media-friendly, less autism-friendly phrasing, and readying myself for the community blow-back.
Putting subtle notice of the event into this article, by mentioning that At 6 PM on February 16th, 2012, at The SoHo Gallery for Digital Art, 138 Sullivan St. New York, NY 10012, www.sohodigart.com, the mothers at my son's school for autistic children will be presenting HOT SOUP/COLD NIGHT -- a fund-raising event featuring bread, beer and home-made soup straight from their kitchens and hoping it slips by the editors [it didn't – the Editors].
Passing the buck to the highly intelligent, wildly creative, extremely generous, and deeply courageous readers of this blog. Do you have any suggestions for punchy-but-inoffensive phrases I could use? I have a Friday, Feb 3rd deadline to get this to Time Out magazine and other local media.

So -- any ideas? Best one gets a free bowl of soup.

----

Update: John asked us to paste his comment below here too. -SR

Since I'm on a deadline I'd like to see if I can refocus the discussion here. The question isn't whether it would be right or wrong to use the "fight autism" phrase. The problem is that it is wrong but would be effective, which is the dilemma since effectiveness is vital. The question is very specifically "What effective phrase can I use instead?"

Headlines are by their nature hyperbolic -- for example the headline could be "15 Year Old Actress Has Two Children!" and the article would be about how she supports two orphans in Haiti and is building them a new house. Keeping that in mind, any suggestions?

Tired (of Autism Misrepresentation)

2012-01-13T03:00:00.000-08:00

Lydia Brown
autistichoya.blogspot.com

From the editors: We hope that even veteran autism parenting advocates and self-advocates will consider this post part of their neurodiversity education, along with Todd Drezner's recent HuffPo article Nickels, Dimes and 'High-Functioning' Autism -- and that it leads to productive reflection and discussion.

From the author: Trigger warning: This is mostly about ableism and a response to other, very triggering things, as well as including lots of direct quotes of ableist stuff.

An accessible audio recording:

Tired - Autistic Hoya by autistichoya

I'm tired of being misrepresented. I'm tired of seeing the principles of self-advocacy misrepresented. And I'm tired of seeing the autism rights movement misrepresented.

Let me be clear. I'm not talking about allies, or about people who were just thrust into Autismland and don't yet know much, if anything, about the constant conflicts that erupt here. This isn't about you.

This is about people who write things like John Elder Robison's "Looking forward at the autism spectrum," or Mark L. Olson's "Autism's Fly-Over Population," or the comments on Susan Senator's "The Parents Vs. The Autistics." It's been a week of frustrating, misleading, and outright hurtful writing.

And I'm tired.

I'm also a little bit furious and a little bit frustrated and desperate to write something. My hands are numb right now, and it has nothing to do with my feelings. It's kind of cold in here, actually.

Some background. John Elder Robison, as most people know, is famous because of his memoirs, Look Me In the Eye: My Life with Asperger's. So he is Autistic, though you'll almost never hear him use that word to describe himself, as he prefers the supercilious Aspergian. More recently, he wrote a book called Be Different: Adventures of a Free-Range Aspergian. Fairly recently, I think around 2009 or perhaps 2010, Robison accepted an appointment to the scientific advisory board of Autism Speaks, an organization notorious for its lack of meaningful representation of Autistic people in leadership positions as well as its harmful and ableist rhetoric. I personally cannot comprehend why any Autistic person in his or her right mind, fully informed, would want to work with or for Autism Speaks, but there you go.

And Susan Senator is the non-Autistic mother of adult Autistic son Nat, as well as the author of Making Peace with Autism, The Autism Mom's Survival Guide, and Dirt (a novel.) I don't always agree with her, but she writes well and is genuinely interested in engaging and dialoguing with Autistic people as equals rather than interesting curiosities. Her most recent article, linked above, engendered a spat of disgusting, disturbing, and sometimes outright frightening comments, mostly from non-Autistic parents.

I think I've read enough disgusting, disturbing, and frightening things last week. I've been triggered pretty badly a few times. In fact, I'm slightly worried about opening the tabs next to this one in my browser, where I have those three pages open, just to get the quotes for this post. If you've read this blog before, you've probably caught a significant change in the tone and style of this post from previous ones. And it's because I'm sick and tired of stuff like this.

(I'm inserting a second trigger warning here: a long list of direct quotes of incredibly ableist and possible very triggering stuff.)

"High-functioning autistic and Aspergers self-advocates who put themselves on an island by arguing that only the disabled can and should decide about the disabled to the exclusion of parents, family, caregivers and outsiders need to accept that they are only advocates for themselves, not the entire disabled population."
-Mark L. Olson, LTO Ventures and parent

Wrong.

All self-advocates are not "high-functioning autistic and Aspergers" as Olson so arrogantly generalizes. The assumption that Autistic people who do things like blog or use speech must therefore automatically be "high-functioning" is fallacious at best and actually harmful at worst. I know firsthand of not a few Autistic people who cannot consistently perform activities of daily living such as cooking, cleaning, keeping a schedule, traveling, or maintaining hygiene without assistance from a family member, friend, or aide. Yet some of those same people often face ridiculous assertions that because they must be so high-functioning or "just Asperger's," their advocacy clearly is illegitimate and unfounded.

Other self-advocates might never be called things like "high-functioning" were you to meet them in person. Amy Sequenzia, of Rockledge, Florida, an Autistic self-advocate who regularly meets with government officials and expresses her opinions rather eloquently in the media and elsewhere, does not speak and travels everywhere with an aide. She communicates by typing via alternative and augmentative communication. (By the way, Amy prefers to refer to herself as "autistic" rather than "person with autism." That too is not something that only "high-functioning people with Asperger's" do.)

And Sequenzia is not alone.

Self-advocates Larry Bissonnette and Tracy Thresher are both non-speaking Autistic adults who communicate via AAC. In childhood, they were presumed mentally retarded and ineducable. They were in segregated classrooms and never mainstreamed or integrated with students without disabilities. Bissonnette and Thresher starred in the 2011 documentary Wretches and Jabberers, which follows their advocacy. Both men have served on the Board of the Autism National Committee, an organization that includes both non-Autistic and Autistic people in the fight for civil rights, and whose constituency has traditionally been non-speaking Autistic people (or Autistic people with limited speech) and their families.

They too are not alone in fighting for Autistic rights. Sequenzia, Bissonnette, and Thresher are only three of innumerable non-speaking Autistic people who are self-advocates. The majority of non-speaking Autistics face even more discrimination than do those who have learned to use speech, and by no means are they excluded from the model of self-advocacy, self determination, and autism rights. Olson's assumption that all self-advocates are "high-functioning autistic or Aspergers" is grossly inaccurate and egregiously hurtful.

Non-Autistic parent Todd Drezner, in his 2011 documentary Loving Lampposts: Living Autistic, further explains why the use of the disputed "low-functioning vs. high-functioning" dichotomy is invalid and not useful when discussing Autistic people, and especially when dismissing so-called "high-functioning autistic self-advocates." In one segment of the documentary, Drezner interviews an elderly non-Autistic mother to an adult Autistic man in his 60s. "Lyndon is employed and lives by himself in his own apartment," says Drezner. "Is he high-functioning? His speech is severely limited and he needs support to perform life's daily tasks. Is he low-functioning? And would it make any difference at all in Lyndon's life if you could answer these questions?"

And what about people like Dora Raymaker? A board member of the Autistic Self Advocacy Network (ASAN) and Co-Director of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), Raymaker does speak but prefers to communicate by text-to-voice. When she speaks, her words are not always articulate, as you can hear in Loving Lampposts: Living Autistic, and could lead the uninformed -- or people like Olson -- to make the assumption that she is "mentally retarded." Clearly, that is not the case.

Olson's second mistake is his blanket assumption that the principles of self advocacy seek to exclude "parents, family, caregivers and outsiders." That is not true. Self advocacy seeks to ensure that Autistic voices are always heard and prominently so in any conversation about autism, along with the voices of parents, family, caregivers, and outsiders. Autistic adults welcome non-Autistic allies. People like Todd Drezner, Susan Senator, Kristina Chew, Kim Wombles, and Amy Caraballo are living proof of that. (And again, these names are only a very representative few of the innumerable allies, many of them non-Autistic parents of Autistic children, and some of children who might be described as "low-functioning" or "severely autistic" -- insert a collective gasp of "WHAT REALLY THEY'RE NOT PARENTS OF ASPIES?" here.)

The principles of self advocacy are not that only disabled people can speak for disabled people, but that they must be involved with any advocacy. "Nothing about us without us" has been a motto of disability rights for a long time. There is nothing in that statement that suggests that non-disabled people have no right to be part of advocacy. What is at stake is that the most important stakeholders -- the people for whom the advocacy is occurring -- are routinely excluded, marginalized, and treated with the kind of contempt that Olson displays.

We, as Autistic people, whether we have been called "high-functioning" or "low-functioning" or both (at different times in our lives), have the right not only to advocate for ourselves individually, but for the rights and needs of Autistic people at large.

What I want to know, really want to know, is what parent in his or her right mind, would not want his or her child to advocate for him or herself? And what parent would not be proud of his or her child advocating for other Autistic people? When a non-Autistic sibling of an Autistic child starts an advocacy or awareness initiative, parents everywhere applaud. Why do you react with horror when Autistic youth and adults want to make the world a better place for your children? That's what involving Autistic people meaningfully in advocacy means. We're not in it for ourselves. We're in it to work toward a world where all Autistic people, children and adults, speaking and non-speaking, can live better, happier lives.

Why would you oppose that?

"The image of autism is going to get lots of attention as more children with autism age into adulthood. Those who don’t see autism as a disability are talking about HF or Asperger’s. The DSMV slated for 2013 will officially expand the spectrum to include Asperger’s and my fear is that 'Aspies' will become the face of autism. It’s much less disturbing to talk about autism and include who seems, outwardly at least, like the boy next door. It’s easier to believe that autism has always been around when we’re talking about someone with amazing abilities or high levels of intelligence combined with some quirky behaviors. My friends with severely affected children have tremendous fears about the future. They clearly don’t need their children further marginalized by those who advocate just for awareness and acceptance."
- Anne McElroy Dachel, Age of Autism

"When self-advocates’ autism talk shifts primarily to rights and entitlement, the need for new therapies, treatments, and services is forgotten. When we focus on entitlement, we create the impression that our problems can be solved by legislative action, much like the civil rights laws did in the sixties."
- John Elder Robison, Autistic author and parent of an Autistic son

Here comes another grandiose misconception. Autistic self-advocates, with some exceptions, are not people who "don't see autism as a disability." If you don't believe me, read closely the following sentences:

1.) I am Autistic.

2.) I am a self-advocate.

3.) I believe autism is a disability.

If you didn't catch that, please scroll up a little and read that again.

I do believe that disability is entirely defined by society, but because of our society and our history, yes, being Autistic means that I am disabled. All Autistic people are disabled. Some Autistic people might be more disabled than other Autistic people, but if you are Autistic, you are automatically disabled.

The people to whom McElroy Dachel appears to be referring probably belong to an "autistic supremacy" or "Aspie supremacy" kind of ideology, the kind of people who believe that being Autistic means they are better, more evolutionarily advanced, or more morally upright than non-Autistic people.

Most self-advocates aren't supremacists. We're not advocating for "Autistic supremacy." We just want equal rights. And yes, rights means services. It means accommodations. It means therapies. It means appropriate education. It means employment opportunities. It means housing opportunities. Rights isn't a vague euphemism for "we don't need help of any kind."

It's a bold, revolutionary statement demanding that the right of all Autistic people to equal access and opportunity as non-Autistic people be honored. And how is that right honored? At least partially, through appropriate services and accommodations, ad nauseam. We have the right to receive services and accommodations without which we could not have equal access and opportunity. Some Autistic people would benefit from more services or accommodations, and others would benefit from very few.

Advocating for rights is not merely advocating for "awareness and acceptance." McElroy Dachel misses the point entirely. We want all Autistic people -- including non-speaking Autistic people, including Autistic people with self-injurious behaviors, including Autistic people with destructive or violent behaviors, including Autistic people who need an aide 24/7, including Autistic people who cannot complete higher education, including Autistic people who cannot travel on their own, including Autistic people who have not yet learned to communicate with non-Autistic people -- to have better lives. And that very often means better services and accommodations.

McElroy Dachel is wrong. And so is Robison.

"Could it be that on the autistic-side-of-the-dichotomy, they are not able to see/perceive/understand/know well-enough outside of their own specific-ability-disability to accept the parental-dimension of autism?"
- Barbara, self-identified as not a parent

This one just blows my mind. I can't win.

No matter what I say, it can't be me; it must be "just my autism talking," as Autistic writer Melanie Yergeau puts it.

So firstly, everything that I say or write is suddenly de-legitimized because (insert sarcasm here) obviously, an Autistic person is unable to understand someone else's perspective or that someone else might have different challenges or needs. Absolutely and unequivocally wrong. At least one study (I believe there were more, but without citations, [and I'm too tired to find them now] I don't want to list anything else) has demonstrated that Autistic people not only experience empathy, but in certain cases, experience more empathy on average than non-Autistic people.

And empathy has a lot to do with perspective-taking, doesn't it? I'm a writer of fiction as well as of this blog. (Currently working on my fifth and sixth novels simultaneously, in fact.) I of all people should know right away that the answer is yes. For one, in my writing, I seek to humanize all of the characters -- and I write crime novels that often focus on religious-inspired terrorism. (Disclaimer: I do not support or condone any form of terrorism for any reason. It's sad, but after the NDAA, that has to be there.) I want the readers to be able to empathize with the characters. And people like Barbara seem to think quite horrifically that people like me are incapable of perspective-taking and empathy.

It's sickening and dehumanizing in the worst sense. For my part, I think Barbara is the one lacking empathy here. Sorely lacking, at that. The irony never fails to astound me.

Secondly, her statement is so patently untrue. There are Autistic people who are also parents of Autistic children, such as Melody Latimer or Paula Durbin-Westby or Phil Schwarz (Autism National Committee) [or TPGA editor Carol Greenburg -eds]. So obviously, Autistic people can understand and even appreciate from personal experience, "the parental-dimension of autism." By the way, all three people listed (who again, are only three people out of innumerable possible names) also happen to be self-advocates.

Thirdly, we Autistic people are more keenly aware of the diversity of disability in our own community than anyone else. How it could be otherwise? And as I've noted repeatedly in this rant of an essay, advocating for rights for Autistic people isn't just advocating for the rights of some Autistic people or of the so-called "high-functioning autistic or Asperger's" people. (Where are those people, by the way? I'm beginning to think they're almost mythical. At the very least, as Todd Drezner [again, a non-Autistic parent of an Autistic child] observed, it can not only be difficult if not impossible to define what makes someone high vs. low functioning, but also not particularly helpful in helping an individual person.)

"I think the dividing line in the autism community is ultimately if a person can achieve those goals of independence. At some point when a child is in 'transition' the parents (finally) have to acknowledge that their child will or will not meet the criteria for adult social service support (medicaid, SSI, and services). At that point, the life paths will differ between those that are 'high functioning' and those that need government supports."
- Marjorie Madfis, parent

Again, it's not so clear-cut. Kathryn Bjørnstad, one of the co-creators of Autistics Speaking Day, cannot travel independently. Kassiane Sibley, a highly articulate Autistic advocate, cannot cook and clean consistently for herself. Other Autistic advocates have noted that they do not live independently and/or receive any number of government support or services. Most of the same people are blanketly labeled "high-functioning" in a frightening attempt to de-legitimize their voices.

If you blog, then you're obviously high-functioning and very fortunate. Therefore, you obviously have no place advocating for people who are far more disabled than you are.

That's how the assumptions go. And they're just that. Assumptions.

Blogging does not equal independent living. Writing does not equal using speech offline. Advocating does not equal being "high-functioning autistic or Asperger's." A large number of people who get called "high functioning" actually need government supports. And a large number of those people are unable to get the supports and services they need.

"Yes, I am upset that my daughter would rather play Pixie Hollow on her computer for hours rather than visit with a friend or interact on Facebook. And I do think this behavior will impede her from being able to lead an independent life. That is why I try to intervene – even though she does not like it."
- Marjorie Madfis, parent

What if she's happier playing Pixie Hollow? What if playing Pixie Hollow is a self-calming coping mechanism for anxiety, sensory overload, or social overstimulation? What if she, like a non-Autistic student in my computer science course this semester, simply sees no use for Facebook? What if she doesn't have friends who value her for who she is as an Autistic person?

Did you ever think to ask those questions, Marjorie?

Most times, most of those "behaviors" are our way of coping with a world not meant for people like us. It seems another lesson in empathy could be used here.

"So, the argument from HFA’s that the problem is the expectations of society, that people learn to mesh into societal norms of manners, eye contact, and reciprocal language (body and verbal) seems just that……A tantrum over not having it their way……"
- Yvette Hansen, parent

Can't win. No matter what we say, anything that challenges the status quo must be attributed to some terrible expression of our autism -- in this case, throwing a tantrum. A tantrum. It's reading ableist comments like this that sorely tempt me to actually throw a tantrum. But I don't. I write these articles instead, hoping (maybe in vain) that people like the ones I've quoted will read them and alter their perceptions, bit by bit.

(I won't even bother addressing the HFA thing here. That horse has already been beaten to death in this piece.)

But all I see here is another profoundly disturbing attempt to de-legitimize the voice of any Autistic person who expresses his or her frustrations. And all those expressions are met with such hostility and condescending accusations as Hansen's, which inevitable evokes only more frustration.

It's hard enough living a world where it is expected that a treatment protocol or behavior plan or intervention for an Autistic child or adult is in place ultimately to eliminate "Autistic" behaviors and replace them with "typical" ones. To make the recipient of those types of therapy appear and act as non-Autistic as possible.

That's not saying that all services and therapies are bad; many are very good and sorely needed -- the kinds of services, supports, and therapies that teach coping skills, cater to emotional needs, address sensory problems, accommodate in a classroom, assist with employment, and provide strategies for coping in social situations with non-Autistics. But these practical considerations are not the goals of most therapies or services.

So when we grow up learning that to be normal and healthy is to not be Autistic, when we are told to suppress obviously Autistic behaviors like echolalia or stimming, when we are sent to social skills classes for the purpose of making us appear more "normal" rather than giving us tools to better interact with non-Autistics, it can get very frustrating indeed. Hansen's utter lack of empathy for the enormous difficulties and anxiety that Autistic people face -- and especially the very verbal Autistic people who often get called "high-functioning" -- because of the pressure to pass is telling.

It hints at the deep, systemic ableism that penetrates not just society at large, but also an unwittingly large number of the parents of Autistic people.

"At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten [from the New York Times article "Navigating Love and Autism"] who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living. They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as 'typical' Americans."
- Mark L. Olson, LTO Ventures and parent

Actually, the majority of so-called "high-functioning and Asperger's" Autistic people are often unable to access or receive the vast majority of supports and services. I don't understand why so many people automatically assume that the Autistic people who speak and or can go to college are also the beneficiaries of most supports and services. Because for those Autistics, the ones whose disability is far more invisible than visible, asking for any kind of support or services usually results in a metaphorically slammed door.

"You're asking? You? Well if you can ask, then you obviously don't need any help."

And whoever said that we wanted to live the exact same lives as non-Autistic people? Equal access and opportunity means exactly that -- access if desired and when desired, and opportunity if desired and when desired. Most Autistic people don't socialize the same way as non-Autistic people. Sometimes we have a different sense of humor. Sometimes we like to eat, work, and play in very different ways. So obviously, we're not advocating to live the exact same lives as non-Autistic people.

We simply want to be able to access a theme park. Or a movie theater. Or a church. Or the RMV. We simply want to have the opportunity to go to college. Or join a civic organization. Or vote. Or work in a field related to our skills and interests. Or live in an apartment or house where we feel safe and at home. And what's wrong with that? What parent wouldn't want barriers for their Autistic children eliminated? Olson's line of thinking seems twisted in incredulously ironic ways.

"Some disability self-advocates argue [that my daughter's] only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person."
- Mark L. Olson, LTO Ventures and parent

Um, no. The proposed Home and Community Based Services waivers under Medicaid, which you can read for yourself right here directly from the federal Government Printing Office, have no such stipulation about living such a distance from another disabled person.

They state that a home or community based setting

must be integrated in the community; must not be located in a building that is also a publicly orprivately operated facility that provides institutional treatment or custodial care; must not be located in a building on the grounds of, or immediately adjacent to, a public institution; or, must not be a housing complex designed expressly around an individual’s diagnosis or disability as determined by the Secretary [and] must not have qualities of an institution, as determined by the Secretary. Such qualities may include regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community.

The proposed regulations further state that

A setting that is integrated in the community is a setting that enables individuals with disabilities to interact with individuals without disabilities to the fullest extent possible. Further, we believe that such settings do not preclude individuals’ ability to access community activities at times, frequencies and with persons of their choosing. Such settings are not segregated based on disability, either physically or because of setting characteristics, from the larger community. In addition, such settings will afford individuals choice in their daily life activities, such as eating, bathing, sleeping, visiting and other typical daily activities.

These do not mean that a group home, a residential institution, or a closed campus setting could not receive government funding. Such settings will still be able to receive funding from any number of other sources.

What they do mean is that a home or community based placement is one where the person is not placed on the basis of being disabled, as in an institution or group home. A place that is not essentially a ghetto, segregated from the community, solely for disabled people. That's all. It says absolutely nothing about choosing to interact with, become friends with, or voluntarily choose to live with or on the same street as other disabled people. In fact, many of us Autistic adults like to be around each other. It gives us a sense of, you guessed it, community.

And as aforementioned, there are a large number of Autistic self-advocates who do in fact receive home-based services, including the services of part and full time aides to assist in activities of daily life. That can happen no matter where the person happens to live. So living in one's own apartment, a la Lyndon from Loving Lampposts: Living Autistic, is not mutually exclusive from receiving appropriate services and support.

"But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our 'fly-over' population. Their story deserves to be told too. They deserve the right to choose how they want to live."
- Mark L. Olson, LTO Ventures and parent

Suddenly we are the ones who resist progressive thinking and innovation? Quite the contrary. We are advocating for more inclusion, more integration, better access, and more opportunity. Equal rights. The right to self-determination. The right to receive appropriate supports and services. The right to live in a fully integrated community setting -- with non-disabled and disabled neighbors -- or to choose, of one's own accord, to live in a setting like a group home.

And there have been a number of initiatives, many of them by Autistic self-advocates, to create progressive, forward-thinking workarounds to challenges with regard to employment, higher education, and even aviation security procedures.

I think we have here a case of selective vision. Censored and redacted vision, perhaps even.

"As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves. By doing so, they are altering the public’s perception of what or who an autistic person is or may become. This reshaping of perception has moved the public’s concept of autism higher on the IQ range, with more and more people seeing 'autism' as a euphemism for 'eccentric geek,' or, 'genius,' which is [sic] most assuredly is not. Popular television shows like Parenthood and Big Bang Theory reinforce that trend. At the same time, the population of people with intellectual disability and severe autistic impairment remains fairly constant. Those individuals are not generally able to speak for themselves. They are most often out of the public eye, and they may rightly feel they are rendered nearly invisible by this change in perception."
- John Elder Robison, Autistic author and parent of an Autistic son

Maybe not to you. But in my experience, most people I've encountered picture a non-speaking child in a corner growing up to be an adult in an institution when I mention autism. Most people don't actually believe me when I tell them that I'm Autistic. (And I was diagnosed by a neuropsychologist who specializes in the autism spectrum and sat on the board of an autism organization.)

Furthermore, two studies, which you can read here and here, have shown that not only is the rate of intellectual disability in Autistic people far lower than it has been assumed to be for decades, but that intelligence (or IQ, more specifically) is regularly underestimated in all Autistic people, both those with the Asperger's label and those without it. So it seems that Robison is a bit behind in his facts.

In my experience, as an Autistic person with fairly invisible disability, I am not the face of autism. People do not look at me and assume that I am Autistic or associate my behaviors with being Autistic. When I disclose, I am frequently met with disbelief, dismissal, or denial. There has been very little change in perception of autism and what it means to be Autistic. And even less change toward the positive -- of viewing all Autistic people as neurologically different from non-Autistic people, not diseased or disordered, but genetically and phenotypically divergent. Sometimes in disabling ways. For many, in severely disabling ways. But being Autistic is not a negative or unfortunate or bad or defective or lesser or inferior way to be human. It's a different one.

"Every time a person with milder autism speaks of his own challenges, those words add to the body of information the public uses to define autism. The more we move that balance from disability toward eccentricity, the more we harm our cause, albeit unwittingly and with the best of intentions."
- John Elder Robison, Autistic author and parent of an Autistic son

Again. Whoever said that Autistic self-advocates, who again, are not homogeneously "high-functioning autistic or Asperger's," collectively deny that autism is a disability? Most of us are the first to recognize that being Autistic means being disabled.

And how can Robison not see how awfully offensive and insulting this statement is? So whenever a highly verbal Autistic person talks, he or she "harms" the cause. That's about as true as saying that whenever a white American woman convert to Islam who does not wear hijab speaks about issues facing Muslim women, she somehow unwittingly harms the cause of advancing civil rights for Muslim women. Is she any less Muslim than a Saudi woman who wears a face-covering niqab or a Pakistani woman from the tribal Pakhtunwala? She may not look stereotypically Muslim or behave (in this case by not covering) in stereotypically Muslim ways, but she is equally Muslim. Her voice is equally valid and equally important.

Autistic people who are not visibly disabled are still Autistic. Just because the average layperson would not immediately assume that I am Autistic does not mean that I therefore have no right to speak about my challenges or the challenges of other Autistic people. In fact, if I do not speak, if I stay silent, then the world will never know that Autistic people are as diverse in our being Autistic as Muslim women are in their being Muslim women. The more Autistic people who speak (literally or metaphorically), the more advanced our cause will be.

Whether it is Amy Sequenzia or me, not speaking is infinitely more harmful toward the autism rights movement than speaking.

"The autism spectrum still includes a large population – several hundred thousand in the US alone – who currently have no realistic hope of substantial employment. That is a tragedy. And it’s not because they are discriminated against. It’s because they are disabled. Not only that, they are disabled for reasons we don’t understand and in ways we don’t know how to fix."
- John Elder Robison, Autistic author and parent of an Autistic son

Actually, it is because they are discriminated against. Autistic people are routinely discriminated against because of their disability. Autism does not prevent a person from being able to work in a meaningful job using his or her skills and abilities. But discrimination does.

Any Autistic person, with appropriate supports, services, and accommodations, can work in a job using his or her skills and abilities. Some Autistic people can work in professions that might be considered impossible, such as in academia, the law, or medicine. Some might work in stereotypically geek professions, like in computer science or other technological fields. Others might work with animals, or in offices, or doing research in obscure but oddly specific fields. Autistic people can do just about anything non-Autistic people can do.

Can every individual Autistic person do any possible job? No. But neither can any non-Autistic person selected at random.

If a person who is perfectly capable and qualified for a job is not hired because he didn't make eye contact during the interview, and he doesn't make eye contact because it is infinitely easier for him to process what is said to him if not making eye contact, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because she doesn't communicate with speech, but can do the job without using speech, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because he needs a few minor accommodations and the employer doesn't want to deal with them, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because she needs an aide to accompany her, that's discrimination.

Robison is wrong.

And he's wrong again -- we understand exactly why autism is disabling. It is disabling because of the society in which we live. Let me quote from an earlier article, "Disability is a Social Construct: A Sociological Perspective on Autism and Disability."

Our culture says that to be fully functional and able means that one should be able to attend a mainstream school, complete university or vocational training if desired, obtain housing, obtain and keep a steady job, and marry and support a family if desired -- all without significant outside support or assistance. While it is considered socially acceptable to speak to a college counselor while in high school, see a math tutor for algebra or calculus, and even depend on one’s parents for financial support through young adulthood (twenties or so), an individual is not considered fully able and functional if he or she is unable to do one or more of those activities without significant amounts of support from others.

By this definition, the definition propagated and permeated throughout the societies in which we live, we Autistic people are disabled. Some of us may be more disabled than others -- as some of us are more able to participate in life activities with less amounts of outside support, and others of us do now and will throughout their lives only be able to participate in some of those activities with significant amounts of outside support.

It's perfectly understandable and perfectly explainable. There's nothing mysterious about it.

But I'm tired of explaining away misconceptions. I'm tired of picking my jaw off the floor after reading such outlandish accusations that I'm throwing a tantrum for not getting my way, or unable to empathize with other people's perspectives. I'm tired of seeing such incredulous statements by people who ought to care very deeply that there are other people, including Autistic self-advocates, trying to make the world a better place for their children. And by people who ought to understand a lot more than they do, as evidenced by their harmful and insulting assertions.

Are you tired, too, now? Because I am. And a few days ago, I almost threw in the towel. Because doing this is rarely rewarding and rarely satisfying. It rarely leads to closure and rarely creates lasting or meaningful change. It's wrought with frustration and disappointment, and frequent personal attacks. That's not just projecting either. It actually happens, and in public, too. Thoughts of leaving the hard work to other people crossed my mind. Maybe other people could deal with all of this. Maybe other people could accomplish things, and I could sit comfortably from the sidelines and applaud them when they received their due rewards. I don't have to do anything, after all. I almost made that decision.

But I didn't. I'm still here. And I'm tired. But I'm not defeated. And I'm far from done.

----

A version of this post was previously published at autistichoya.blogspot.com.

How to Support the New Thinking Person's Guide to Autism Book

2012-01-11T03:00:00.001-08:00

The Thinking Person's Guide to Autism community is growing rapidly; it's no surprise we keep getting requests about how to support our new book. Thank you, community!

We appreciate every last effort to spread desperately needed positive, evidence-based autism information and advice via our book -- whether you buy a book for a neighbor, an autism grandparent, the family of a child with a new diagnosis, an adult friend who may find it insightful -- or buy a box of books to hand out at the next meeting you attend.

There are many ways to help get the word out about the TPGA book, several of which do not require spending money. Some ideas:

Post a review on Amazon.com. Tell the rest of the world why our book matters, and why it helps!
Ask your library to purchase a copy of the book. The more requests a library gets, the more likely they are to purchase it. And when that library buys the book you will have made it possible for hundreds of other people to access a one-stop handbook for excellent autism information.
Email your friends and family this sample PDF and a link to a bookseller like Amazon (is.gd/TPGAonAmazon) or Createspace (is.gd/BuyTPGA) or Barnes & Noble (is.gd/TPGAonBN)
Donate a copy to your current or former pediatrician, because -- for so many of us -- how great would it have been to see this book on their shelf ten years ago?
Put a widget to purchase the book on your own blog or website. You can use the HTML we've provided.
Make a donation to our 501c3 so we can purchase books for libraries, schools, and doctors' offices.
Contact us about doing interviews, book readings, radio, and internet radio spots. We're pros. We're fun. We're informative.

Profits from sales of the Thinking Person's Guide to Autism book go straight back to the community. We currently plan to donate proceeds towards "funding outstanding science" at the Autism Science Foundation, and investing in adult Autistics (whether that describes us now, or our children/clients in the future) via ASAN, the Autistic Self-Advocacy Network.

If you would like to fundraise for your own autism organization via TPGA book sales, contact us directly. If you have any other questions, leave a comment or email us at thinkingautism@gmail.com.

Thank you again for your support of Thinking Person's Guide to Autism.

-The Editors
Shannon, Jennifer, Liz, Emily, and Carol

Reflecting on My Future Self

2012-01-09T03:00:00.000-08:00

Jennifer Byde Myers
www.jennyalice.com

Grocery shopping this morning, a mom and her son passed by me in the floral department. She is probably in her 50's because her son looked about 10 years older than mine... and yes, her boy plays for our team: Autism. Right down to the 6 foot 2 inches of young man flapping his hands next to the strawberries and "oooo--Wheeeeing" in the dairy section. I could tell before the stims though, it's amazing how quickly I can spot a person with autism who's in the same part of the spectrum as Jack.

When I see another family with a special needs child, I always try to smile — at the child, or the parent, hopefully both, to show that, even though I don’t have a stamp on my forehead or my son in tow, I understand a little bit about their life. I always hope that a friendly smile will make a person feel there is more good than ill-will in this world. I know there are days when I just hope that we can get through one single transaction without a struggle, and knowing that there are compassionate strangers nearby can make all the difference for me. But she wouldn't make eye contact with me, or anyone else for that matter, except her son.

And while I thought it was precious that she spoke to him so clearly, looking directly into his face, in an undistracted and meaningful way, I also found it a little distressing to think that perhaps she has had to block the rest of us out. I felt compelled to go over to her, and make some benign comment about her shoes to initiate a conversation, just to make sure she knew that there are those of us out here, who would help if we could, and know a lot of resources, and could take the cart if things got a little hairy in the parking lot (even though her son was doing an awesome job). And, let’s face it, I just wanted to take care of her. Which made me feel a little like a creepy stalker, because maybe she just wasn’t that social in the first place. I think what I really wanted to know is this: will I become like her? and will Jack be like her son?

Will I be so over other people staring at us by then that I will stop bothering to make eye contact? Will I look a little more resigned, but braver just the same? Will I look that tired, which is even more tired than I look now? Will my shoulders be that hunched? Will I look like I *really* need a break?

and will my son be pushing the cart? Helping a bit, pausing for a little stim, then back to the cart, not running anyone over, not running off? Will Jack still be with me, daily, when he's 20? 30? (and will he be that handsome?)

Jack wears a size 8 shoe already (that's a 10 woman's shoe in case you need a little frame of reference.) He grows taller and stronger and more like a young man every day. It's getting harder to pretend that he is going to stay a little boy forever when you're shopping for shoes that big. And like so many parents, the future seems so far away right now.

photo courtesy of Moore & Warner

For awhile things were so hard I couldn't wait for Jack to get older, and grow out of whatever those troubles were. Then he got older and surprise! that age had its own pile of troubles. And certainly we experienced a lot of joy in there too, but it always seemed like a better version of our family was just around the corner. I am trying to be more aware, and happy with exactly where I am at any given time, and now that we've gained some stability, I've been been neither looking back or looking forward. We've just sort of been living, and enjoying, which I think is okay as long as I get back to that planning for the future thing, fairly soon. Sniff some flowers, but stay on the trail. And I want to make sure there's a plan for me too; maintaining my friendships, increasing the vegetable intake, getting more sleep. I don't really want to end up looking like that old red barn we pass on our way to the coast: confident, but beaten down, still in use but possibly not structurally sound anymore.

There are so many things to worry about, to obsess over, to wonder, and so much to do, all the time. That day, of course, I went to the grocery store without a shopping list, came home with eight bags of groceries, and still had no plan for dinner. So perhaps I’ll start with feeding my family before I move on to the rest of my life.

A version of this essay was previously published on Salon.com, on February 11, 2011.

Being the Change We Want

2012-01-06T03:00:00.000-08:00

(Or, A Good Dose of Humility Never Hurts)

Kim Wombles
www.kwomblescountering.blogspot.com

I’ll have been involved in the online autism community for three years this March. I’d say the community has changed, but I’m thinking it’s more that I changed over the years. People still bicker about the same kinds of things (some of the people are the same ones who’ve been at it for years), and the divides seem to be more entrenched than ever before, if you go looking in those places. I try to avoid that, now.

Sometimes, when I make the round of blogs, of bloggers posting their deepest feelings, only to be roundly attacked by others, I want to respond, to get into the middle of things. Most of the time, though, now, I don’t. I shrug and move on. I ask myself first what possible good could come out of my investment.

It isn’t that my positions about autism have changed much. I still don’t think vaccines are implicated in autism. I still have a strong aversion to the use of untested and potentially dangerous treatments. I hate to see people throw away precious resources on woo when their efforts, time, and money could be better used. I’m still adamantly opposed to those charlatans who take advantage of parents who will do anything to help their children achieve their potential.

What has changed, though, is how I believe individuals should be approached, how situations should be addressed. Where I once found myself outraged, angered, frustrated and hell-bent on calling out the things I found horrible and the people doing those horrible things, I tread more lightly. I try to avoid being reactionary. Is it really horrible? Are they acting out of malice? Is there a better way to deal with the situation? Where possible, I think avoiding directly rebutting another person’s words and instead presenting the evidence against a treatment is better than directly addressing another person.

It took some hard knocks to come to that realization, but it’s one I’m working on doing.I don’t want what I do to be a reaction to other people. I want it to be proactive and compassionate. I’ve written over the last year about how I regret the way I first approached the vaccine wars. Almost without reservation, I am disappointed in myself over what can be perceived as attacking people personally.

Over this last year, my time as a hospice volunteer has taught me how to just be there for families undergoing the worst times in their lives; I’ve learned how to accept without judgment the way individuals face their challenges. Being in a position where that’s my primary role -- nonjudgmental support -- has made me more reflective of my actions and beliefs. We all do the best we can with what we’ve got. Some of us face the challenges more adaptively. Some of us don’t. Some of us are great at putting on a mask and hiding our agony. All of us deserve respect and compassion as we go through our lives.

And it’s those experiences, coupled with Kathleen’s and my work at the Autism Blog Directory, that have changed how I feel about people on other sides of the “divide.” It’s a divide if we let it be, if we think there’s only one right path, only one right way. I’m tired of the divides, of the us-versus-them approach.

One of the best things I did was get involved in my local community. It meant wading into the local Autism Speaks to do it -- and while I know intimately the objections many in the online world have towards the organization, working on the walk and meeting families who believe a whole host of things differently from me forced me to let go of anger at people who choose what I consider, based on the evidence, to be pseudoscience. I backed up and shut up. In most situations, people don’t need to be directly confronted on their choices; it won’t make them change in the direction the other person wants them to. It simply entrenches them and deprives both parties of a chance for support, for genuine friendship, for growth.

I still write evidence-based pieces, but I refuse to be reactionary towards others in the community. Attacking others just makes their lives all the more difficult, and I really don’t like the idea that I’ve made someone’s day harder, that I’ve hurt someone who was already struggling. Really, the thought that my words could have pushed people further to the edge, deeper into woo, made them more bitter, angrier people makes me ashamed to have written those words, and for those I harmed, I’m sorry.

That doesn’t mean I’ve gone all soft and mushy with no clear positions. There are some things I am certain are wrong. There are people in our online community who I believe do tremendous damage to others and who, I think, do so intentionally with the sole purpose of getting ahead. I think those people are in the minority, though, and most people are doing the best they can. I think there’s a respectful, appropriate way to counter the woo and those who peddle it, and I work harder now to find that way.

Countering, my blog, has absolutely changed in the last 34 months. I think it’s a change for the better, and I know that how I approach things, how I handle adversity will continue to evolve. Do I miss the chances at snark? A little bit, but it’s just not worth it if that snark hurts someone else. My kids are watching me, reading me, looking over my shoulder. They’re out there, interacting with the world, and if I want others to show them empathy, compassion, patience, and acceptance, then I must pave the way by being that kind of person. We must, I think, ultimately be the change we want to see.

How Autism Parents Can Listen to Self-Advocates

2012-01-04T03:00:00.000-08:00

Shannon Des Roches Rosa
www.squidalicious.com

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.
-Winston Churchill

You'd think we parents of kids with special needs -- righteous avengers that we so often are -- would be extra-invested in listening to the self-advocates who share our children's experiences, who in many cases used to be our children. You'd think someone like me, who truly believes behavior is communication, would take more time to understand why a self-advocate would criticize something I'd written, would ask for more information before reacting, would understand that a self-advocate can both be articulate and need communication accommodation. You'd think that, knowing how many times even well-meaning people have dismissed my son's needs or spoken to him as though he was an obedient puppy, I'd understand how self-advocates might have very little patience for parents who patronize or disregard them.

But, I often don't get it, as I am a neurotypical parent, not a self-advocate. And when I advocate for my eleven-year-old son, I sometimes overstep advocacy boundaries, or am blithely non-inclusive -- talking about "children with autism," for instance, when I really mean "people with autism."

If self-advocates let me know that my efforts are misguided, that is when I have a choice. I can react instantly and defend my intentions -- or I can take a step back, and try to understand why a self-advocate would take offense at something that I worked so hard on, and meant so well by. I can listen to what they are saying, rather than how they are saying it (not always easy). I can try to determine exactly what I have done that is hurtful, and ask how I can avoid doing it again. And I can remind myself that this process, this learning does not equal total and complete agreement (nor should it; if we are truly talking about a meeting of minds).

It's not easy. I am a defensive person, I have a hard time taking criticism. I also loathe conflict and want everyone to get along. Plus, I live on the Internet where instant reactions are not just possible but expected. So, instead of listening and acknowledging, instead of giving myself processing time, instead of asking questions -- I too often react on my terms. According to my expectations of civil disagreement, and my expectations of trying to understand each other's contexts.

Which is ironic, really, when you consider that I am most often engaging with Autistic self-advocates. Even those not terribly familiar with autism usually know the stereotypes of frankness, and of challenges with understanding perspectives not personally experienced. I should know that demanding diplomacy, and asking to understand each others' contexts is not exactly fair in a neurodiverse environment. As Nomatissima wrote in I’ve Earned My Anger: Policing and Dismissing Autistic Emotions:

The fact that my emotions are deemed “not appropriate” for the situation makes it all the more infuriating. It may not seem like a legitimate response to a neurotypical, but an autistic perspective is going to take certain things a lot more seriously, and will more rapidly notice when something isn’t right in a situation related to disablism. It’s not always going to be pretty, and we’re not always going to be able to sum it up in tidy little speeches. That’s okay. It should just show how committed we are to this, and what it means for us, how profoundly we care about this topic. It’s not a matter of weakness, lack of manners, or being “emotionally incontinent” (Nice imagery there, eh?)

The autism stereotypes I cited above are not universal among the diverse community of Autistic self-advocates, of course. Some folks with autism are fully committed to civil disagreement. Others have clarified that it is unfair for we who rely on the (problematic) concept of theory of mind -- on being able to anticipate how others might feel and how our actions would affect them -- to expect accommodation from Autistics. As spunkykitty wrote on Rachel Cohen-Rottenberg's Autism and Empathy project:

But is this Theory of Mind really so great to have? For what good purpose, if only to negotiate and manipulate? Frankly, I am tired of always trying to read other people’s minds and always bending over backwards and in every compromising position to try to be sensitive to other people’s feelings.

I am the opposite of not considerate and not empathic. I am self-destructively considerate and empathic -- but where has that landed me? I spend 80% of my emotional thought-life trying to figure out other people’s intentions and hidden meanings, and trying to be caring, loving, gentle, considerate. But I do not even command half as much space in their minds or hearts. Not even with their supposed adeptness at Theory of Mind would they bother to try to understand my feelings, my thoughts, and my desires. That is the truth. Painful? Yes, but truth is truth.

If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates' spaces, rather than always expecting them to come into ours. And then try to ask the right questions! As Lynne Soraya wrote about her fourth grade teacher, whose overzealous attempts at forced social inclusion made Lynne miserable, and who wished her teacher would have just asked her why she was rejecting her social overtures, or tried to understand why she was behaving the way she did:

My best teachers did ask why. Better yet, they often read between the lines and came up with the answers themselves. It's sad for me to see that despite all the education and awareness, so many have not learned to do the same. The unfortunate truth is that sometimes, what masquerades as compassion and empathy is really just judgment, in disguise.

It's hard for me not to get defensive when self-advocates are critical. Because I mean well! But why should self-advocates think I'm any different, if their experience has largely been that people in my position discount their experience, and if I'm still talking, not listening?

Some of the most difficult exchanges happen when self-advocates criticize parents, and parents respond that self-advocates are not like their kids and cannot speak for them. This make my conflict-averse head spin. Because here's the thing: on the small scale, the personal experiences within the disability community may differ, but on the larger scale, and in terms of advocacy needs, our kids and self-advocates have more in common than not. Making comparisons isn't helpful, not when both experiences are legitimate -- and especially when those comparisons are tangents, irrelevant to the argument that triggered them in the first place.

We parents like to think of ourselves as good people, and hopefully, mostly, we are. But do our actions back up those good intentions? We get filled with righteous indignation while watching movies about objectification by the dominant culture, films like Temple Grandin, Boys Don't Cry, or My Fair Lady. We are outraged by stories of middle school Aspergian torture. We believe, in our souls, that we would never behave so badly toward another human being. We believe that, were we ever in those situations, we would act differently. Right? Let's try to prove it.

Let's try to demonstrate that we are aware of our privilege as neurotypicals, of being outside the disability community. As was reinforced for me last August during BlogHer11's Immigration panel featuring Jose Antonio Vargas, when we're part of the dominant culture, we can't claim we aren't privileged. We are. And it doesn't matter that we didn't ask for the privilege -- we have to make choices about what to do with that privilege. And self-advocates do not have to be nice to us about it, though I think many have demonstrated exceptional patience with me.

Personally, I am trying to listen, really listen, to self-advocates like Corina Becker, who wrote in What I Want People to Know:

I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.

I know I'll fail a lot, probably badly. I know some self-advocates will be really honest with me when I fail. I know some self-advocates don't care what I do, as they're working on strengthening their own community, into which parents and caregivers do not factor.

I'll keep trying to listen, and trying to act accordingly, because I want the best life possible for my son and his community-mates of all ages. As Ari Ne'eman said at the 2011 Syracuse University Neurodiversity Symposium in regards to the parent and self-advocate communities,

At the end of the day, we want the same things. At the end of the day, we're hoping for the same better world. It's just that we who actually live this life, we who actually experience these challenges, are in a position to tell the world that there is not just one way to accomplish them.

At the end of my day, I want a world that treats my son with dignity and respect, takes him seriously, and gives him the accommodations he needs -- regardless of whether but especially if he asks for them -- without patronizing or infantilizing him. And if I of all people do not treat my son's possible future selves -- today's self-advocates -- the way I hope he will be treated, they way everyone deserves to be treated, the way no one should ever have to ask to be treated, then how could I ever demand anyone treat my son better?

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A version of this essay was previously published at www.squidalicious.com

Interview: Seth Mnookin on Championing Smart, Compassionate Vaccine Information

2012-01-02T03:00:00.000-08:00

Seth Mnookin's book The Panic Virus: A True Story of Medicine, Science, and Fear is a smart, compassionate, detailed history of vaccine misinformation and distrust. It's being re-released in paperback tomorrow, with a new cover, a more direct subtitle, and a new afterword.

TPGA editor Shannon Rosa talked with Seth last year about the motivation and goals behind The Panic Virus; she spoke with him again last week about his book's intended audience; the critical and oft-misconstrued distinctions between vaccine court rulings and scientific proof; the frequently misunderstood role of vaccine reporting and compensation programs like VAERS and NVICP; and how pediatricians, OB/GYNs, and parents themselves can all contribute towards improved -- and best -- vaccine information practices.

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How are you feeling about the impact your book has had, with respect to your original goals? Are you reaching the folks you hope to reach?

People who are aware of these issues [public perceptions of vaccines] are definitely aware of the book. But in some ways, those are the least important people in terms of what I'm trying to accomplish. Talking specifically about the autism-vaccine connection, if you were up on that issue before my book came out, I think you probably already decided where you stood, and I think it's unlikely that my book was going to change your thinking on that. And I understand that. The vast majority of parents in the country -- young parents or parents to be -- aren't in that place, weren't already really involved in this issue. Yet in terms of how I can be a positive force in the world, those are the people I want to try to reach.

What's tricky is that it's very easy to get caught up in the echo chamber of just hearing from people who already knew about this issue -- or any issue that someone's writing about. In some ways it's the people who are not going to comment on my blog, people who are not going to retweet me or Facebook fan me who are most relevant to the conversation. But when you're going around your day-to-day life, it's very easy to lose sight of the fact that the people who are commenting on your site and engaging with you on social media are a very small percentage of who's out there.

Have the social media dynamics of The Panic Virus's first year been a case study for the journalism classes you teach?

I talk about The Panic Virus a lot in terms of pitfalls and problems to be aware of in controversy, but in terms of the benefits of different strategies in trying to find readers, I haven't really dissected that.

You have always been very compassionate about understanding the motivations of people who buy into the kind of misinformation your book is addressing. Has this changed at all in the past year?

I try to force myself to be aware that the people I hear form, and the people who engage with me who are active proponents of the vaccine-autism link are not representative of that population. And it would be a huge mistake on my part to equate the type of invective that I'm sometimes subjected to, to assume that that is how most of that population is thinking. An example: I recently spoke at a medical research conference -- via Skype as my daughter had just been born -- and there was someone in the audience who was very vocally anti-vaccine, and who ended being taken out of the room for something I had nothing to do with, and in fact I probably would have preferred that he stayed -- but regardless, that was an upsetting incident to me.

But, I also got an email from a parent who was in that [same conference's] crowd -- not specifically because she wanted to harangue me but because she is an epidemiologist who happened to be at this conference -- who believes her child was vaccine-injured. She wrote to me and said that she thought that I should display more compassion when I'm talking about parents like her, which actually surprised me because in general it's something I try to be very conscious of. We had a several-email back-and-forth that was very involved and detailed. I know I'm not going to convince her of my perspective and I think she knows she's not going to convince me of hers, but we ended saying -- I believe very genuinely -- that if we're ever at the same conference in the future, we'd like a chance to sit down and say hello and introduce ourselves. So I need to remember that she is probably more representative of people who disagree with me on a whole.

So, yeah, it's been a challenge but probably a good one for me.

Another thing I've become more practiced at: whenever I write something because I'm worked up, I write and then table it, at least for a day. It's a hard thing to do because your instinct, especially when you're engaged online, is to get everything out there -- to be part of the conversation, speed is good, etc. But I would rather be slow to the conversation than write or say something not really dictated by what I actually thought or felt but dictated by my being upset over criticism, or whatever. There's probably two dozen pieces I've written over the last year that will forever languish in a folder on my computer and never see the light of day -- because they shouldn't see the light of day. They helped me get less upset, and that's that.

Would you be wiling to talk about some specific vaccine issues covered in The Panic Virus, especially regarding how VAERS (Vaccine Adverse Event Reporting System) and NVICP (National Vaccine Injury Compensation Program) work? We get a lot of comments on our site and our Facebook page from people who misunderstand how they work, and invoke them as proof of vaccine-autism causation.

It's really tricky and complicated. Albert Einstein said, "If you can't explain it simply, you don't understand it well enough," but I think VAERS and NVICP show that this isn't a universal truism. I don't think there's any way to give a one or two sentence explanation.

I think what people don't understand about VAERS is that there's a difference between something being reported, and something being causally connected. I mean, it says in big print at the top of the VAERS reporting page, "Please report all significant adverse events that occur after vaccination of adults and children, even if you are not sure whether the vaccine caused the adverse event."

I think there are an enormous number of reactions that are underreported just because they don't rise to the level of someone thinking they should report them, like rashes after the MMR vaccine, or fevers. And by the same token, there are an enormous number of reactions that are reported that are not actually related to the vaccination, or vaccine event. I know one pediatrician who had an infant have a febrile seizure in her office right before a vaccination, I've had plenty of doctors tell me stories about a child who had to change their appointments from a Wednesday to a Thursday, and then something happened Wednesday night -- a fever, or a rash, or something. I have a two-year-old and a newborn, and something's always going wrong with them. They're constantly sick, or seeing the doctor.

Another thing people don't understand about VAERS is that it is designed to cast as wide a net as possible in an effort to then identify which of those reported reactions are potentially connected to vaccination -- because they need as robust a data set as possible to draw their conclusions. It is not designed to be a way of saying "If A, then B."

What you've seen over the last decade or so is that lot of things that parents have gotten very concerned and very anxious about are cropping up more frequently, because parents are more conscious of them, and more likely to be looking out for them, and reporting them.

About the Injury Compensation Fund (NVICP) you have a similar but not entirely parallel issue. The similarity is that the injury compensation fund is not designed to determine whether [table injuries] are connected to a vaccination event; it's designed to be as generous to families as possible. And I think that makes sense, I think that's a good way to run the program.

But that means there are cases in which a payment is given out -- and that does not mean the incident was caused by a vaccine or that there's any connection to vaccine, it means something very different. It's why, actually, when the Autism Omnibus rulings came down, I was a little bit uncomfortable with the reaction that some vaccine advocates had, which was "this proves there's no connection." And my feeling is that it actually didn't prove anything! It had nothing to do with proof -- what you're trying to establish in a court of law and what you're trying to establish with science are not opposites and they're not connected -- but they're not the same thing. And regardless of what ruling had come down in the Omnibus cases, it didn't mean that the science had changed.

What made me uncomfortable about those reactions, is that I think vaccine advocates should make sure they are in the position of saying "we support the science," and not "we support this other thing that is not directly connected to the science but which happens to support our position." Because I think that can be dangerous.

What can we do to help families like the Cedillos, who were the lead petitioners in the Omnibus Autism Proceedings of June 2007 and pursued their petition in good faith but based on anti-vaccine beliefs and bad advice?

That's something I almost feel like I didn't draw out enough in the book. One thing that's so tragic about the Cedillo case is that that is a family that would have received compensation if they had filed a table injury claim. Even though now after having gone through years and years of medical records and testimony, it appears that Michelle's condition was not causally connected to a vaccination event, she very very likely would have received compensation if she had filed a table injury claim.

I don't think there's anyone who doesn't wish that family had more support. And that includes people working in the vaccine court, and working on the compensation fund. There are a lot of people working in the court and involved in administering the fund who just found the scenario to be absolutely heartbreaking, and I think you saw some of that in the Special Masters' opinion, which was much more emotional than you'd typically see, and he essentially said as much -- that this was a family who had been taken down a really unfortunate path.

And what's interesting about that is that there are other vaccine court cases where families have been given compensation, and one of the things they exhibited was "autism-like symptoms" -- but that isn't the table injury claim that they made. To my mind, the Cedillo case is a very good example of why those other awards do not definitely mean that anyone is saying there is a connection between vaccines and autism.

Could you define the difference between a Table Injury and what the Cedillos were trying to accomplish?

Table injuries are a list of injuries that the court has already agreed could theoretically be caused by a specific vaccination, in a specific amount of time. Table injuries are things that have been established to the court's satisfaction to have occurred in the past. In the Cedillos' case, they were part of this Omnibus claim that was trying to establish autism as a table injury.

So whereas for a table injury there is a very diminished burden of proof -- you don't need to show that the vaccine caused whatever the injury was, all you need to show is that both things happened -- both things being a vaccine and the injury. When you're trying to establish a new table injury, the process of doing that is first proving that that injury can be caused by giving vaccines. So to go back to the case of the pediatrician having a child having a febrile seizure right before a vaccination -- if the seizure had happened afterward, not only would the incident have been reported to VAERS, but that child could potentially have received some kind of reward -- because all you have to show is that the vaccine happened, and then the injury happened (though in that case, being a febrile seizure, there was likely no lasting damage). The larger point holds, though, that it's an example of the diminished burden of proof that's needed for table injuries.

I think it also makes very clear something people tend to misunderstand, which is that NVICP awards are not the result of typical courtroom proceedings or rulings; it's nothing like a Law and Order episode.

Yes, you're not using "beyond a reasonable" doubt, which is what you'd typically use in a typical court of law. The standard in the vaccine court is much, much lower.

Do you think expectant parents could be better informed about vaccinations?

I think a huge, huge shortcoming in our public health system is the way that information about vaccines is given to everyone, but especially expectant parents. I think that there is a disappointing amount of collaboration between the people involved in prenatal care, and the people involved in postnatal care. There's a real opportunity to start to have those conversations with expectant parents, and that's a time when parents are more able to take in and process information, and think things through.

Speaking from my personal experience with both of our children, I kind of felt like I'd been hit by a Mack truck when they were born. I was not in a place where I could sit down and have a calm, measured conversations about the benefits and risks of vaccinations and why are we still vaccinating agains polio, etc., when I had a kid who hadn't slept in five days and spit up all down the front of my shirt. But if we'd had that conversation when my wife was five months pregnant, that was exactly when we had notebooks full of questions and information and plans and all of that.

That is an area where there's a lot of work to be done, and I think the notion that the OB/GYN part of the equation is not responsible for what happens after the baby is born and therefore shouldn't get involved with those sorts of conversations is a deficient argument.

Anything else you'd like to say about the book?

One thing I try to remember to say is that the most important person to talk to is your doctor. One of the reasons I included 100 pages of end notes and citations and bibliography is that I didn't want readers to take anything I had to say on faith. I wanted them to be able to find out why I felt justified in saying that. So I hope my book can be used in a resource in that way -- but, again, the most important person to talk to is your pediatrician.

I fully get how hard it can be to get your pediatrician to pay attention to your concerns outside scheduled ten minute wellness appointments. But I think parents actually have a responsibility in making sure their questions get addressed. One thing my wife and I started doing is when we had a question or concern that fell outside the purview of a typical appointment, is we would call in advance and make it clear before we got there that we wanted time outside of that fifteen minute appointment, so the doctor would know before we got there that we had other matters we wanted to discuss, and that it was not acceptable to tell us that there wasn't time. And that can be hard to do, to make demands; doctors are really busy and pediatricians more than anyone -- but I think parents really have a responsibility to do that, and to not just come out of an appointment feeling unsatisfied, and then decide that they're going to find those answers from their friend or their neighbor.

2011: The TPGA Year In Review

2011-12-30T03:00:00.000-08:00

Liz Ditz

What a year! We published 189 posts from 114 authors, many new to Thinking Person's Guide to Autism. The complete list is below the fold.

We branched out. I started to categorize the blog posts using the section headings from the book, and realized a lot of the posts didn't exactly fit. We published a lot more posts by autistics, and more on adult issues in autism. Advocacy wasn't a heading in the book, but was a big subject this year, and into the future. Technology and research were also covered with more posts than in previous years.

Thinking Person's Guide to Autism went to, and reported on, conferences: the International Meeting for Autism Research (IMFAR), the International Technology and Persons with Disabilities Conference, Hacking Autism's App Hackathon, UCSF's Developmental Disabilities Conference, and BlogHer. In terms of virtual events, we observed Autism Awareness Month by posting daily, and promoted and reported on Autistics Speaking Day.

In 2011, our Facebook page (www.facebook.com/thinkingpersonsguidetoautism) developed a lively community of its own. We use it not just to publicize posts here, also but to put up short articles and links of interest to the community.

There were two big events here: One was the Self-Advocate/Parent Dialogues, which began on September 19 and ran until September 30. About these conversations, TPGA editor, self-advocate, and autism parent Carol Greenburg wrote:

The thing about conflict resolution is that it requires conflict, which is messy, no matter how sensitively it's handled. Just because it's inevitable doesn't mean it's not annoying. In fact, in my experience, speaking as an individual unable to fully represent any community of any kind, the more annoying the task, the more important it is.

Editor Shannon Rosa wrote:

This has been, and will continue to be, an imperfect process. It will continue to be hard work. It will also require a lot of tolerance for the mess and the imperfection, and eyes on the larger prizes of dialogue and constructive conversations.

The other big event was the long-awaited release of our book, The Thinking Person's Guide to Autism, followed by Steven Silberman's review, naming it his "Book of the Year."

What is in store for 2012? Running more wonderful posts from you, our community, and more autism advocacy.

On behalf of the entire Thinking Person's Guide to Autism editorial team, I want to express our deep thanks and gratitude for our readers and contributors.

The Complete List of 2011 posts, in alphabetical order by last name. (On section assignments and the ordering of the list: the assignment to section is for some posts, arbitrary, as they might have fit in another. Interviews and transcriptions of talks are listed by the person's name, rather than the interviewer or the transcriber. Rather than ordering the list chronologically, I chose to alphabetize by last name.)

Autistics on Autism

Julia Bascom, Quiet Hands (11/23/11)
Julia Bascom, Introducing the Loud Hands Project (12/26/11)
Corina Lynn Becker, Why I'm Wearing Black (04/21/11)
Katie Bridges, Special Interests (07/27/11)
Rachel Cohen-Rottenberg, On the Matter of Empathy (07/01/11)
Sharon daVanport, Interview with Sharon daVanPort (02/07/11)
Carol Greenburg, George Takei On My Mind (3/23/11)
Carol Greenburg, An Interview with Carol Greenburg (04/25/11)
Carol Greenburg, Heeding Autism's Aesop (06/22/11)
Carol Greenburg, Good Cop (07/11/11)
Carol Greenburg, I Feel For You (08/01/11)
L.C. Horn, Imagine This (01/10/11)
Leah Jane, Autism Acceptance for Autism Awareness Month (04/12/11)
Kirsten Kirsten, My Fights with Autism and the Need for More Awareness (04/29/11)
Kerry Magro, Coming Out: Autism in College (07/15/11)
Lindsey Nebeker, Autism, Siblings, and the Art of Unconditional Love: An Interview with Lindsey Nebeker (05/02/11)
Lindsey Nebeker, Autism and Orgasm (07/06/11)
Alex Plank, Interview with Alex Plank, Autism's Most Eligible Batchelor (07/29/11)
John Elder Robinson, Be Different: An Interview with John Elder Robinson (04/15/11)
Heather E. Sedlock, Stop and Smell the Roses but Be Wary of the Thorns… (06/01/11)
Steven Shore, The TPGA Interview with Steven Shore (11/09/11)
Lynne Soraya, The Power of Presupposition (02/09/11)
Sunfell, Wrestling with Asperger's (06/03/11)
Lydia Wayman, Communication: A Million Little Things (10/07/11)
Emily J. Willingham, Autism and Function: An Autistic Boy's Perspective (05/25/11)
Zoe, About Stimming (04/04/11)
Zoe, Headlines: Abuse and Empathy (04/23/11)

Issues in Adult Autism: Transition Issues,
Employment, Housing, and ...

Liane Kupferberg Carter, Roots and Wings (02/14/11)
Daniel Dage, Planning for the Transition from IDEA Protection to Adulthood (02/28/11)
Rory Patton, Fit to Work in the UK, But Where? (08/08/11)
Elise Ronan, On Snowstorms and Planning for the Future (02/23/11)
Susan Senator, Penny Foolish and Pound Cruel (02/25/11)
Laura Shumaker, Talking About Sex With Young Adults with Autism (10/05/11)
Scott Standifer, Rethinking Employment for Adults with Autism (01/24/11)
Scott Standifer, Autistic Fixation Shapes Photographer's Unique Images (02/18/11)
Kim Wombles, On Autonomy and Establishing Guardianship for My Son (01/28/11)

Practical Advice for Autistics, Autism Parents, and Others

Corina Lynn Becker, Surviving the Holidays with Autism (12/07/11)
Terri Connolly, Religion and Autism: The Christian Perspective (06/10/11)
Kim Dull, But I Don't Know What to SAY (06/15/11)
Greg Evans DDS, Dentistry and Autism Spectrum Disorders (01/14/11)
Kathi Flynn, Five Ways to Reduce Problem Behaviors (08/17/11)
Sarah MacLeod, Reading for Answers (03/25/11)
G. Brett Miller, Some thoughts on Dads, IEPs, and PTOs (06/17/11)
Sarah Oriel, Why Is There 30 Pounds of Rice in the Bathtub? (07/25/11)
Eric Peacock, Finding Resources With My AutismTeam (08/22/11)
Chris Pierce, Say YES! To Summer Camp (05/06/11)
Shannon Des Roches Rosa, Summer Strategies for Autism Families (06/20/11)
Shannon Des Roches Rosa, Have A Merry, but Modified, Halloween (Repost) (10/31/11)
Shannon Des Roches Rosa, Finally Finding Holiday Gifts for Kids with Special Needs (12/12/11)
Steven Shore, Learning to Play An Instrument Is For People With Autism Too (10/10/11)
Hartley Steiner, What Is Sensory Processing Disorder (01/12/11)
Joshua Weinstein, Religion and Autism: The Jewish Perspective (06/10/11)
L. Mae Wilkinson, International Travel with an Autistic Child (08/10/11)

After the Autism Diagnosis: First Steps

Sharon Morris, Processing Grief After An ASD Diagnosis (03/18/11)
Karen Velez, Early Ignorance (11/18/11)

Caregiving and Autism

Amanda Broadfoot, Church with the Special Needs Child (03/30/11)
TPGA Editors, Wandering: We Need Data (04/08/11)
Jennifer Byde Myers, Parenthood (the show) and Telling Your Child About Asperger's (03/07/11)
Autism and Oughtism, Unfriendly Consequences: What Competition for Limited Resources Does to the Autism Community and Autism Families (06/29/11)
Sarah Schneider, Redirection (03/16/11)
Deanne Shoyer, I'm Not A Bad Parent...Right? (12/16/11)
Laura Shumaker, Autism Families: Seeking Support is a Sign of Family Health (07/22/11)

Therapies And Service Providers

Diane Leventhal, Which Students Need Social Learning Groups? (11/11/11)
Jennifer Byde Myers, When Medication is the Right Choice (02/02/11)
Joni Redlich, DTP, Autism Spectrum Disorders and Physical Therapy: The Motor Connection (11/04/11)
Dr. Som, For Physicians: 10 Things You Can Do To Help Families Affected by Autism or Developmental Delays (02/16/11)
Dr. Som, Early Screening: Ode to the MCHAT (03/31/11)

Causation Theories and Dubious Therapies

Liz Ditz, Andrew Wakefield, Yesterday's British Medical Journal Articles on His Fraud, and The Thinking Person's Guide to Autism (01/06/11)
Robert Goldberg, Interview with Robert Goldberg PhD (03/21/11)
Seth Mnookin, An Interview with Seth Mnookin (01/19/11)
Jennifer Byde Myers, My Baby Cried Louder than Science (08/03/11)
Paul Offit, Interview with Paul Offit MD (01/31/11)
Adam J. Slagell, Hi-Fi Pseudo-Sci, Occupational Therapy, and Making Some Lemonade (03/28/11)
Amy Tutuer MD, Autism and Mother Blame (01/17/11)
Emily J. Willingham, Mitochondrial Disease and Autism: Linked? (03/09/11)
Emily J. Willingham, Differentiating Between Real Science and Fake Science (12/14/11)
Kim Wombles, Listening Therapy (07/13/11)

Autism Acceptance and Inclusion from the Parents' or Neurotypicals' Point of View

Carrie Arick, Kid Manual: A Little Mom Snark (06/08/11)
Christina Goodley Bailey, Asperger's Syndrome is Real, Even When It is Hard to See (02/21/11)
Jennifer Bush, What are the Chances (01/05/11)
Alysia K. Butler, Wonder (04/05/11)
Kristina Chew, The Eternal Autismland Conundrum (08/29/11)
Dana Commandatore, Interview with Dana Commandatore (06/13/11)
Christa Dahlstrom, Seven Years Old (04/11/11)
Christa Dahlstrom, Interview: Crista Dahlstrom of Flummox and Friends (11/14/11)
Jess Diary of a Mom, MIT (01/03/11)
Liz Ditz, What Am I Doing Here? (04/14/11)
Kim Dull, The "A" Word (04/26/11)
Stuart Duncan, The Last Word on Person-First Language (07/20/11)
Jack Gallagher, A Different Kind of Cool (12/28/11)
Rob Gorski, My Broken Heart: The Bare-Handed Man (04/28/11)
Joan T. Hocky, Lessons from Season 10 (06/06/11)
Debra Hosseini, Interview: Debra Hosseini and ARTISM The Art of Autism (07/03/11)
Rupert Isaacson, Interview with Rupert Isaacson (02/04/11)
Sam Kellar, Profound Lessons from Asperger's Syndrome (01/21/11)
Sarah MacLeod, Patience, Awareness, and Justice (04/27/11)
Spectrummy Mummy, My Fight (04/20/11)
Patty Porch, Random Acts of Pickles (05/08/11)
Chris R., Excuse Me-- That's My Son You Are Talking About (11/21/11)
Kris Robin, Little Songbird (04/18/11)
Shannon Des Roches Rosa, Loving Lampposts: Accepting and Understanding Neurodiversity (03/29/11)
Shannon Des Roches Rosa, I Want to Tell You A Secret About Autism Awareness (08/05/11)
Shannon Des Roches Rosa, TPGA at BlogHer 2011 (08/12/11)
Brenda Rothman, The Color of Skin (07/08/11)
Sarah Seymour, On "Social Blindness" (06/27/11)
Kristen Spina, All I Have to Say (04/07/11)
Amy Spurway, Mother of a Child with Autism (04/19/11)
Squillo, Two Steps Forward, One Step Back (04/06/11)
TPGA Editors, Let Me Stim, Let Me Stim,Let Me Stim (12/23/11)
Emily J. Willingham, What Is It About Autism? (04/01/11)
Jean Winegardner, Interview with Ryan Cartwright of Alphas (10/03/11)
The Brothers Winn, What You Ought to Know: Autism (02/19/11)

Autism — Parent Voices

Dawn Comer, Purple Sucker (04/13/11)
Rivka Iacullo, Randomness (04/22/11)
Sarah MacLeod, Love By Any Other Name (09/05/11)
Spectrummy Mummy, The Journey (09/14/11)
Jennifer Byde Myers, Checking the "Autism" Box (08/15/11)
Jennifer Byde Myers, Joy, Guilt, Tomatoes: Parenting and Autism (09/12/11)
Mark Osteen, In the Echo Chamber (01/26/11)
Brenda Rothman, Facing My Fears About Learning (12/02/11)
Susan Senator, Idle Thoughts On A Son's Transition to Autistic Adulthood (10/21/11)
T.C., At the Dog Park (05/23/11)

School and Education Issues

Alan Foley, An Interview with iAdvocate Alan Foley (06/24/11)
Charles P. Fox, Emergency Evacuation Should Be Part of Every IEP (03/11/11)
Corin Barsily Goodwin, Autism Spectrum Disorders and Giftedness: Twice Exceptional (02/11/11)
KAL, Back to School (09/07/11)
Lydia Wayman, An Autistic's Advice: Ten Tips for Teachers (12/05/11)

Bullying

Judy McCrary Koeppen, Dear Parents of the Blue Bombers (03/02/11)
Shannon des Roches Rosa, Bullying and Special Needs (02/15/11)
Emily J. Willingham, Why We Are Homeschooling Our Autistic Son (08/24/11)

Technology and Assistive Devices

Elaine Park, Motivation, Middle School, and iPad Cool (05/04/11)
Sandy Plotkin, The 26th Annual International Technology and Persons with Disabilities Conference (03/04/11)
Shannon Des Roches Rosa, iPads and Autism Resources (03/22/11)
Shannon Des Roches Rosa, Hacking Autism's App Hackathon (Part 1) (10/17/11)
Shannon Des Roches Rosa, Hacking Autism's App Hackathon (Part 2) (10/19/11)

Autism Research

Sander Begeer, IMFAR 2011: Sex Differences In the Identification and Diagnosis of Autism, Asperger’s Syndrome and PDDNOS (05/13/11)
Jon Brock, PPD-NOS and DSM5 (11/07/11)
Rachel Cohen-Rottenberg, A Critique of the Empathy-Quotient (EQ) Test (11/28/11)
Eric Courchesne, IMFAR 2011: Dr. Eric Courchesne on the Developmental Neurobiology of Autism (05/20/11)
Tom Insel, IMFAR 2011: NIMH Director Tom Insel on the IACC (05/12/11)
Sally Ozonoff, IMFAR 2011: Onset Patterns in Autism: Correspondence Between Home Video and Parent Report (05/13/11)
Shannon Des Roches Rosa, Takeaways From The 10th Annual UCSF Developmental Disabilities Conference (03/14/11)
Shannon Des Roches Rosa, IMFAR Press Conference (05/11/11)
Shannon Des Roches Rosa, IMFAR 2011: Characterizing Cognition in Nonverbal Individuals With Autism: Innovative Assessment and Treatment (05/12/11)
Shannon Des Roches Rosa, International Autism Conference Comes To San Diego (05/13/11)
Shannon Des Roches Rosa, IMFAR 2011: Intermission Teaser (05/15/11)
Shannon Des Roches Rosa, IMFAR 2011: Proof of Evolution (05/16/11)
Shannon Des Roches Rosa, IMFAR 2011: What Parents Expect For Their Autistic Children, High School and Beyond (05/18/11)
Lawrence D. Scahill, IMFAR 2011: The Clinical Face of Anxiety in Autism (05/30/11)
C.M. Schumann, IMFAR 2011 Neuopathology of the Amgydala in Autism (05/27/11)
Alison Singer, Interview with Alison Singer of the Autism Science Foundation (07/18/11)

Issues in Advocacy (Autistic Self-Advocacy, Parental Advocacy, and Other Issues)

Corina Lynn Becker, The Beginnings of Autistics Speaking Day (09/09/11)
Lydia Brown, Person-First Language: Why It Matters (The Significance of Semantics) (11/30/11)
Kristina Chew, The Self-Advocate/Parent Dialogues, Day Nine (09/29/11)
Rachel Cohen-Rottenberg, With Autism, The Empathy Issue Is A Human-Rights Issue (09/16/11)
Rachel Cohen-Rottenberg, Unwarranted Conclusions and the Potential for Harm: My Reply to Simon Baron-Cohen (Part One) (10/12/11)
Rachel Cohen-Rottenberg, Unwarranted Conclusions and the Potential for Harm: My Reply to Simon Baron-Cohen (Part Two) (10/14/11)
Liz Ditz, Autistics Speaking Day 2011 (11/01/11)
Paula C. Durbin-Westby, The Self-Advocate/Parent Dialogues, Day Nine (09/30/11)
Paula C. Durbin-Westby, A Mother, Fearing the Costs of Autism, Kills Her Child (12/09/11)
TPGA Editors, The Self-Advocate/Parent Dialogues: Intermission (09/24/11)
Kassiane, The Self-Advocate/Parent Dialogues, Day Seven (09/27/11)
Kassiane , Advocacy Begins with "No" (11/02/11)
Melody Latimer, The Self-Advocate/Parent Dialogues, Day Six (09/26/11)
Ari Ne'eman, Keynote Talk: Syracuse University Neurodiversity Symposium, Part I (08/19/11)
Ari Ne'eman, Keynote Talk: Syracuse University Neurodiversity Symposium, Part II (08/26/11)
Ari Ne'eman, Keynote Talk: Syracuse University Neurodiversity Symposium, Part III (09/02/11)
Ari Ne'eman, The Self-Advocate/Parent Dialogues, Day Three Ari Ne'eman (09/21/11)
Shannon Des Roches Rosa, Lives Worth Living: A New Film on the American Disability Rights Movement (10/26/11)
Robert Rummel-Hudson, The Self-Advocate/Parent Dialogues, Day Two: Robert Rummel-Hudson (09/20/11)
Robert Rummel-Hudson, The Self-Advocate/Parent Dialogues, Day Five (09/23/11)
Amanda Forest Vivian, The Self-Advocate/Parent Dialogues, Day Eight (09/28/11)
Lydia Wayman, It's Becoming Very Real, That Sad World (10/18/11)
Emily J. Willingham, Words Matter: Thanks, Ricky Gervais, for the Pitch (10/24/11)
Jean Winegardener, Finding Not Even Wrongland (11/16/11)
Zoe, The Self-Advocate/Parent Dialogues, Day One: Zoe (09/19/11)
Zoe, The Self-Advocate/Parent Dialogues, Day Four (09/22/11)

Announcements from the Editors

TPGA Editors, Carol Greenburg Joins TPGA Editorial Board (01/11/11)
TPGA Editors, National Conference On Autism and Employment (01/13/11)
TPGA Editors, Support the Autism Science Foundation (02/20/11)
TPGA Editors, April is Autism Story Sharing Month At TPGA (03/24/11)
TPGA Editors, Autism Awareness 2011: The Stories We Shared (04/30/11)
TGPA Editors, TPGA will be blogging IMFAR (05/11/11)
TPGA Editors, TPGA's Mission Explained on Health Central (06/11/11)
TPGA Editors, A Little Helps A Lot (06/23/11)
TPGA Editors, Help Urban Autism Preschoolers Get A Playground (07/24/11)
TPGA Editors, Resources: Share the Wealth (08/31/11)
TPGA Editors, Attitude of Gratitude: Xoom Giveaway (11/25/11)
TPGA Editors, Our Book Is Here! (12/19/11)
TPGA Editors, Our Book Named Book of the Year! (12/21/11)

A Different Kind of Cool

2011-12-28T03:00:00.000-08:00

Jack Gallagher
www.jackgallagher.info

I have been a professional comedian for 30 years. My resume includes appearances on the Tonight Show, Cheers, Late Night with Conan O’Brien, an ABC sitcom and appearances as an opening act for such diverse performers as Tony Bennett and Warren Zevon.

However, my most important role is that of a father to an autistic child.

In addition to the aforementioned credits, I have also written four one-man plays. The latest is entitled “A Different Kind Of Cool” and chronicles the relationship I have with my son Liam.

While I have been lucky enough to have all of my plays receive positive reviews, ADKOC has garnered the most attention of anything I’ve written or performed. I’ve heard from people all across the country as well as Australia, Sweden, and Finland. To say it has hit a nerve with people who has seen or heard of it is an understatement.

The interesting thing is the play almost didn’t happen.

A little backstory. I am lucky enough to live in Sacramento, the home of a fantastic new works theatre, The B Street Theatre. For the past fifteen years or so, I have been associated with these folks. Every three years or so they contact me and ask if I have anything in mind that might work for their space.

In the past, I have written plays about being a new dad (Letters To Declan), trying my luck in Hollywood (Just The Guy) and losing my parents (What He Left). All of these pieces are personal and revealing.

While I was anxious to write another play after the theatre contacted me, I was at a loss as to what the topic might be. In fact, the only idea I had was to write about the Boston Red Sox finally winning the
World Series in 2004 after 86 years. I am an avid fan.

It was my wife who suggested I write about Liam.

While he had been diagnosed with PDD-NOS as a second grader, his challenges were never something we spoke about publicly. We are a very private family.

However, my wife thought it was time that people knew our story. She thought that families with kids on the spectrum could relate to my struggles with Liam and that people who thought they understood autism might learn a little something.

Like most parents of an autistic child, the period when Liam was diagnosed was a confusing and emotional period.

Where do we go for help? To whom do we talk? Is there a cure?

While we searched for answers to these questions, I thought the first thing we needed to do was work harder. I thought Liam could apply himself more and we could “fix” whatever was wrong.

I wanted him to be like the other kids and not some uncool outcast.

As a former teacher I knew that different learning techniques worked for different kids.

We discovered early on that Liam was a visual learner, so I started working in that direction. I made chart and graphs and flash cards. While he was in the fifth grade I completely rewrote his entire math book to include more pictures and charts.

And while Liam continued to do well (with the help of an aide) in a mainstream classroom, I noticed our relationship was suffering. Homework time was dreaded by both of us. I would push him harder and harder. There were tears and yelling and a general feeling of frustration on both our parts.

After one particularly awful session, I realized this wasn’t working, I decided to step back. I just couldn’t do it anymore.

When I did that, I noticed, once again, the things at which Liam excelled. Unconventional things in terms of schoolwork but interesting nonetheless.

He has an amazing imagination. Loves video games. Can quote entire books of Calvin and Hobbes comic strips. He wrote and submitted a Simpsons script at age ten and ultimately received his first rejection letter!

While homework and school are still important, what I found to be even more important is to let Liam be who he is. To not try and turn him into every other boring person I know. To let that energy and creativity seek its own level.

Is it hard to do? You bet. But the results are so much more pleasant and positive. And he is still doing well in school. Without an aide!

We are letting Liam be Liam.

So what if there are quirks? So what if he isn’t just like everyone else. He’s better than everyone else because he’s the one and only Liam.

And I realized that there was no need for a fix, because there is nothing wrong with him.

He is different. And he is cool.

Introducing: The Loud Hands Project

2011-12-26T03:00:00.000-08:00

Julia Bascom
juststimming.wordpress.com

Our Story:

The Loud Hands Project is a publishing effort by the Autistic Self Advocacy Network. Currently, we are raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website.

Loud Hands: Autistic People, Speaking features essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands). Questions posed to the contributors might include what does autism mean to you; why does Autistic culture matter; what do you wish you had known growing up Autistic; how can the Autistic community cultivate resilience; what does “loud hands” mean to you; and how do you have loud hands? The anthology is the first of a projected series featuring contributions from Autistic writers stressing the preservation and celebration of Autistic culture and resilience. The website will host shorter and multi-media submissions along the same lines, along with additional materials and videos, and serve as a focal point for the project and community.

Our Impact:

The Loud Hands Project is about survival, resilience, and pride. The Loud Hands Project is necessary because autistic youth face systematic oppression, abuse, and bullying every day. It does not “get better” for us -- typically, upon graduation, it actually gets worse. This must change.

The Loud Hands Project is a structured, multi-faceted response by the Autistic community to the systematic disenfranchisement, bullying, and abuse experienced by autistic youth, young adults, and self advocates. Taking the form of a publishing effort by the Autistic Self Advocacy Network and spearheaded by Julia Bascom, The Loud Hands Project consists of multiple prongs organized around the theme of what the Autistic community refers to as “having loud hands” -- autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience. We focus on cultivating resilience among autistic young people and empowering us in building communities and cultures of ability, resistance, and worth. To quote Laura Hershey: “you weren’t the one who made you ashamed, but you are the one who can make you proud.”

How You Can Help:

We need to raise ten thousand dollars ($10,000) to help cover the initial costs of putting together and distributing our first anthology and launching our website. Please consider making a donation -- every little bit helps!

Spread the word! Check out the share tools on our page, and please use them! Like us on and/or become a fan of our Facebook page; follow us on Tumblr and Twitter too, and tweet about the project using the hashtag #loudhandsproject.

Let Me Stim, Let Me Stim, Let Me Stim

2011-12-23T03:00:00.000-08:00

The holidays are upon us, and that means hanging with folks who might need a nudge or a gentle reminder about holiday kindness and accommodation for kids and people with autism, on being nice about behavioral awareness versus assuming naughtiness.

One thing we'll be seeing in our house as my son adjusts to an atypical schedule is stimming. Lots of stimming. Some of Leo's stimming needs redirecting, but most of it is functional and self-soothing. Our friends and family get why Leo stims and what he needs, they have his back; Leo will be fine, we'll be fine. But if you or your child need stimming functionality backup or want to help understand why stimming doesn't just matter but can be very necessary, I suggest citing Zoe's About Stimming, or Julia Bascom's The Obsessive Joy of Autism.

Or, you could just sing folks this song, which I came up with in Leo's honor five years ago.

(To the tune of "Let it Snow, Let it Snow, Let it Snow")

Oh, the holidays are coming
And that means that I'll be bumming
Unless you can go out on a limb, and
Let me stim, let me stim, let me stim

It's my favorite way of coping
And it calms me so I'm hoping
You won't feel the need to look grim, just
Let me stim, let me stim, let me stim

When it's finally time for bed
Please don't make me give up my red straw
Or I might never go to sleep
And all of your nerves will be raw

I'm not hurting anybody
Though to you I might look nutty
Don't you folks have a tree to trim??
Let me stim, let me stim, let me stim!

If you're looking for a last minute holiday gift, may we suggest the Thinking Person's Guide to Autism book? You can always order it now, then print out the TPGA Amazon page and wrap that, to let your lucky giftee know it's on its way!

Happy holidays from our hearths to yours.

Thinking Person's Guide to Autism Named "Book of the Year"

2011-12-21T03:00:00.000-08:00

We couldn't be more grateful, humbled, or thrilled about the first wave of reviews for the new Thinking Person's Guide to Autism Book!

Steve Silberman, investigative reporter for Wired and other national magazines, declared Thinking Person's Guide to Autism his Book of the Year (!):

Covering a wide range of nuts-and-bolts subjects — from strategizing toilet training and and planning fun family outings, to helping your kid cope with bullying, to identifying the issues that a skilled speech-language therapist can work on with your child, to spotting and avoiding “autism cults,” to navigating byzantine special-needs bureaucracies and providing your child with appropriate assistive technology, to fighting for your kid’s right to an individualized education — the Thinking Person’s Guide to Autism is bracingly free of dogma, heavy-handed agendas, and pseudoscientific woo. What distinguishes it from, say, the fine guide for parents recently made freely downloadable by the National Autism Center, is the heart, soul, fierce intelligence, and subversive wit of the authors and editors, which shines on every page. Offering observations from parents, professionals, and autistics themselves, the book is a welcome dose of optimism and uncommonly good sense.

From Sullivan at Left Brain Right Brain: Thinking Person's Guide to Autism: The Book:

The Thinking Person’s Guide to Autism has been a very successful website with excellent discussion for some time now, and now the book is available. You can buy it on Amazon. From CreateSpace you can read the short blurb:
Thinking Person’s Guide to Autism (TPGA) is the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autistics, autism parents, and autism professionals
Having read the first two chapters I agree with the statement above. It is a resource I wish I had when my kid was diagnosed. Sure, I’d have loved to have read this book before and been better prepared.

From Caroline Miller at Child Mind Institute: Parenting and Autism: Uncommon Empathy Required

We hear that one of our favorite websites, the Thinking Person's Guide to Autism, has a new book out today, a collection of pieces by their thoughtful and emotionally astute writers. You can buy it here, and they say the Kindle edition will be available soon.
It's a good excuse to try to describe what's so valuable about the voices collected on TPGA.

I think it's the power of personal experience combined with hard-headedness about information. It's the combination of warmth and realism: you feel the love the writers have for their kids (and other people's kids) even while (or exactly while) they are telling the truth about how difficult it is be to be a parent to those kids, and how imperfect we all are at it.

From Jean Winegardner at The Washington Times Communities (and a contributor to the book), in her Holiday Gift Guide: Books About Autism:

One of the best sites on the web for information about autism from parents, professionals, and autistic people themselves, the editors at Thinking Person's Guide to Autism have just published their first book featuring contributors (including the author of this column) offering many points of view.

We appreciate all the kind words, and for their role in getting our book noticed (it's been selling like hotcakes). We hope you'll be motivated to get a copy of the book for yourself, or for someone who could really use solid advice about autism!

[You can get HTML code here to put an Amazon link on your own website!]

Our Book is Here! Thinking Person's Guide to Autism in Print.

2011-12-19T03:00:00.000-08:00

Thinking Person's Guide to Autism is available in print today! We couldn't be more proud.

It has been an amazing year and a half since we began this adventure. We're so pleased that the great work of our contributors is now available to any person searching for reliable, experienced, positive information about autism.

For all today's smiles and pride, the truth is Thinking Person's Guide to Autism's inspiration was our persistent frustration with the negative autism stereotypes and misinformation we faced in parenting our children with autism, or advocating with/amplifying the signal of the amazing Autistic communities. As stated in our Mission, this book is the resource we wish we'd had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.

We want to thank all of the amazing contributors to this website, and those authors in the first book (listed below); you are a wealth of knowledge. And of course, our work would not be complete without the dedication of our fantastic editors: Shannon Des Roches Rosa, our Executive Editor, devotes her time, experience, and tenacity to creating and guiding this group of works, and coaxes the best out of each of us. Liz Ditz uses her social media superpowers to recruit many strong skeptic and neurodiversity voices to our website and book. Emily Willingham, our science editor, consistently delivers her trademark literate compassion, whether writing about parenting or science. And there's Carol Greenburg with her tension-breaking wit, her empathy and wisdom, and her pragmatic voice colored by her experience as a professional advocate, parent, and a self-advocate. [And Jennifer Byde Myers, without whose gorgeous writing, alchemy skills, and publishing experience this website and book could not have existed -SR.]

Together we constantly strive to provide the best information we can find to people new to autism -- or new to positive, evidence-based approaches; provide insight to the professionals who serve our communities; and offer a well-lit path to individuals or families looking for a resource to help determine what "autism" will mean for them.

Thank you to our friends, our families, and the wonderful Thinking Person's Guide to Autism community for making this book possible. Today is a good day.

With sincere gratitude-
Jennifer Byde Myers
for the TPGA Editors

Please see our Press Page to share the book's release with media outlets or interested parties. You can purchase the book online at Amazon.com. The Kindle/eBook version will be available soon.

Contributors to the Thinking Person's Guide to Autism

Kate Ahern
Devon Koren Alley
Kyra Anderson
Anonymous Special Needs Professional
Asperger Ninja
Katharine Beals, Ph.D.
Corina Lynn Becker
Barbara H. Boucher, OT, Ph.D., PT
Liane Kupferberg Carter
Sara Chapman M.A.
Kristina Chew
Clay
Rachel Cohen-Rottenberg
Daniel Dage
Christa Dahlstrom
Michael V. Drejer
Judy Endow, MSW
Susan Etlinger
Shawn C. Graves
Carol Ann Greenburg
Prather Harrell
Michelle Hecht, M.A., BCBA
Jess at Diary of a Mom
Jillsmo
JoyMama
Mir Kamin
Brian R. King, LCSW
Estée Klar
Judy McCrary Koeppen M.S., CCC-SLP
Kim Leaird
Kev Leitch
Diane Levinthal M.A., CCC-SLP
Sarah Low
J. Lorraine Martin
Jennifer Byde Myers
Lindsey Nebeker
Kristin Neff, Ph.D.
Rory Patton
Holly Robinson Peete
Pia Prenevost
Shannon Des Roches Rosa
Brenda Rothman
Jordan S. Sadler, M.S., CCC-SLP
Susan Senator
Laura Shumaker
Kristen Spina
Squillo
Mike Stanton
Hartley Steiner
Frances Vega-Costas
Susan Walton
Emily Willingham
Jean Winegardner
Kim Wombles
Sandy Yim

Book cover design by Amy Freels: www.amyfreels.com

Thinking Person's Guide to Autism logo by Will Hornaday: www.shoehorndesign.com

I'm Not a Bad Parent ... Right?

2011-12-16T03:00:00.000-08:00

Deanne Shoyer
www.smallbutkindamighty.wordpress.com

Deanne is the mother of gorgeous twin boys, five years old, who are both on the autism spectrum.

I’ve read a number of blog posts where the writer describes the ways that strangers or relatives make them feel their parenting skills are inadequate. This post will not be adding to that number. It is about a struggle I’ve had in dealing with some challenging behaviours from Oliver. My reactions to those behaviours led me to conclude (at least initially) that I wasn’t being the best mother I could be.

Oliver had been displaying some pretty aggressive behaviour towards Owen: pushing him hard enough so that he would fall over, kicking him (usually once Owen was on the floor) and pulling his hair. The worst incident happened when Oliver pushed Owen off a chair and Owen fell on his head. It got to the stage that Owen would cower every time his brother came close.

Of all the challenges I’ve so far faced as a mother, this was the first that left me feeling … powerless, bereft and, to be completely honest, angry. Owen is the sweetest little guy and it hurt like nothing I’d ever experienced before to see Oliver behave that way towards him. (Don’t get me wrong, I know my Owen isn’t perfect; he can be incredibly stubborn -- and passive aggressive! -- at times.) But then there was also the fact that Oliver’s behaviour was so out of character -- he’s normally very affectionate and caring. Seeing one of my babies hurting another one of my babies was very painful. Then there was the reaction of the boys’ father and grandmother. It took a lot out of me frankly, having to constantly explain that Oliver wasn’t being ‘naughty’ or ‘bad’ and that the right response wasn’t to shout at him about what he was doing and that he didn’t need to be disciplined or punished.

Then one day it happened; I cracked. I came out of the bathroom and Oliver was pulling Owen’s hair and kicking him. I shouted at Oliver to stop but then I found myself yelling, “Why? Why are you doing this to Owen? I don’t understand!” I was holding Owen and crying and then the look on Oliver’s face made me cry more. I’d hurt him. I held both of them and cried. I knew I couldn’t handle this behaviour effectively any longer and to avoid getting upset with Oliver again I started putting him into time out. Not because I thought this was the best strategy but because at least it prevented me from shouting at him and worsening the situation further. Nonetheless, I felt like I had failed him.

Oliver has had recurring bouts of aggression which I had dealt with in the past using planned ignoring. I didn’t feel that this was effective in dealing with this latest phase however, especially as the behaviour wasn’t being ignored by others, i.e., his caregiver, his father, and his grandmother. I hated putting Oliver in time out but until I could speak to his supervising therapist and we could figure out a better approach I needed to be able to calm myself down when these episodes occurred. I confided in a good friend who is also an ASD parent about what was happening and their response was that they’d never used time outs but that their ex did. Given my friend’s opinion of their ex, this was less than a ringing endorsement of my strategy! I officially diagnosed myself as a bad parent.

I compiled some data on the behaviour and finally got a chance to speak to Oliver’s supervising therapist about strategies. I told her that I really needed her to be very specific and detailed with me. If she was going to recommend that I ignore the behaviour then I needed to know exactly what that would look like -- how I could ignore Oliver while interceding to make sure Owen was safe at the same time. We came up with the following:

I would work on timed, specific, positive reinforcement with Oliver. I was separating the boys to avoid incidents but she wanted me to actively work on putting them together as much as possible – to sit them together during meals and on public transit, to get them to walk together instead of me being in the middle of them and so on. During those times I would tell Oliver how happy I was with how he was interacting with Owen. I would make sure I did this at least ten times a day.In terms of how to react when he was aggressive I was not to say anything at all to Oliver, not to make eye contact with him and not to touch him if possible. Ideally I would put myself between the two boys with my back to Oliver and that would be sufficient but if I had to, I could grab his brother and Owen and I would go into “time out.”Whether it was these strategies or if the behaviour simply waned on its own I’m not completely sure, but Oliver’s displays of aggression towards Owen have reduced dramatically. The behaviour had spiked when there were a number of changes to the boys’ routine and so it may have been simply a reaction to that -- Oliver can be very rigid.

So where did that leave me in terms of my feelings that I’d failed him as a parent? I realized what really ate away at me was not being able to understand Oliver. I knew he wasn’t being naughty but it was so tough to explain to others exactly what he was doing. If I couldn’t explain it to others that meant I probably didn’t understand it either and I needed to understand my son before I could start to feel better about myself.

From the data I’d been collating I knew the behaviour was mostly in reaction to not liking the things he was hearing. For example, if he was told to wait and he didn’t want to or if he requested an activity that wasn’t available to him at that point he would immediately turn on his brother. Clearly frustration at his lack of control over circumstances was at play here so I had to be better prepared if I was going to give him “bad news.” If something that he wanted wasn’t available then I had to offer him a choice of things he liked that he could have. Good old redirection! But this was a strategy to prevent a reaction, it didn’t get me any closer to understanding his behavioural choices. Why was aggression towards Owen his reaction to feeling frustrated?

I started thinking about Oliver’s life in general. As I mentioned previously, he can be inflexible, rigid and along with that goes some anxiety. He holds it together all day while he’s in IBI (Intensive Behavioural Intervention) and so it’s understandable that sometimes he would lose it at home. I’ve looked into some ways that could help him manage his tension and I’m going to try progressive muscle relaxation and breathing exercises with him. These are after all good ways of coping with stress regardless, so there’s no downside to him learning these skills. Again though, this is another strategy -- helping him learn ways to self-regulate. It still doesn’t explain why he was currently dealing with his anxiety and tension by being aggressive towards his brother instead of (say) throwing himself on the floor screaming -- an alternate strategy he has deployed in the past.

I knew Oliver didn’t resent or dislike Owen. He will often talk about how cute Owen is. He’ll stroke Owen’s hair and tell me that it’s really soft. He cuddles his brother a lot and if Owen gets upset he’ll say “Owen’s sad.” Oliver is actually a good reader of his brother -- when Owen is crying because he’s angry rather than hurting or upset, Oliver will say “Owen’s fussy!” (I have to say, it’s pretty cute!) So again I came back to the question -- why is he beating the crap out of his brother?!

Just so we’re clear, I wasn’t reinforcing the behaviour by “giving in” -- Oliver was not getting the things he wanted out of this. However, I understood what his therapist was saying -- that the attention Oliver got as a result of the behaviour (me running over, telling him No, putting him in time out, etc.) had a reinforcing rather than a deterring effect. But this still didn’t explain to me why he was choosing that particular behaviour, especially given the fact that it did absolutely nothing to ease his frustration. Again and again I went over the same ground -- I knew he didn’t like hurting his brother so why was he doing it?

The scales finally fell off my eyes as I was reading an article on behaviour. The writer was discussing “extinction bursts.” This is what can occur when you start implementing measures designed to extinguish a particular behaviour and in response the behaviour suddenly and dramatically starts to increase. Wikipedia’s example of an extinction burst is as follows:

“Take, as an example, a pigeon that has been reinforced to peck an electronic button. During its training history, every time the pigeon pecked the button, it will have received a small amount of bird seed as a reinforcer. So, whenever the bird is hungry, it will peck the button to receive food. However, if the button were to be turned off, the hungry pigeon will first try pecking the button just as it has in the past. When no food is forthcoming, the bird will likely try again … and again, and again. After a period of frantic activity, in which their pecking behavior yields no result, the pigeon’s pecking will decrease in frequency.”

In explaining extinction bursts the writer of the article I was reading used an example that most adults will have some familiarity with -- what can happen when another person ends a relationship and we are not ready to accept this. Typical reactions are crying, negotiating, getting angry (sounds a lot like our kids, right?). For a period of time these behaviours may worsen and we find ourselves continually thinking about and attempting to contact the person we still desperately want to be with. Some individuals will go to the extreme of threatening to harm or even actually harming themselves.

I thought of how intense the pain is when a relationship ends and it suddenly occurred to me -- what if Oliver feels pain that deeply when he doesn’t know how to handle a situation? As adults, what do we often do when we hurt so badly that we don’t know how to deal with the pain effectively? Well, we sometimes lash out at the people we love the most. We know it’s not right but we also know that its effective because those people love us and somehow this will result in us getting some help. We’re hurting but we don’t have the words to explain it -- we just want someone to make it better.

I don’t know if this is how Oliver feels but it makes sense to me. Thinking of it in this way has helped me understand what could be going on inside my beautiful boy’s head. If “behaviour is communication” then this behaviour helped me understand what Oliver was trying to tell me. I did (and still do) feel badly about shouting at him and putting him in time out but a lot of positive things have come out of that heartbreaking period. I’ve discovered some strategies that seem to be working and that feel effective. I’ve got some ideas for more things I can do to help Oliver self-regulate. Most importantly I feel like I understand Oliver again.

Differentiating Between Real Science and Fake Science

2011-12-14T03:00:00.000-08:00

Emily Willingham
biologyfiles.fieldofscience.com

Pseudoscience is the shaky foundation of practices -- often medically related -- that lack a basis in evidence. It's "fake" science dressed up, sometimes quite carefully, to look like the real thing. If you're alive, you've encountered it, whether it was the guy at the mall trying to sell you Power Balance bracelets, the shampoo commercial promising you that "amino acids" will make your hair shiny, or the peddlers of "natural remedies" or fad diet plans, who in a classic expansion of a basic tenet of advertising, make you think you have a problem so they can sell you something to solve it.

Pseudosciences are usually pretty easily identified by their emphasis on confirmation over refutation, on physically impossible claims, and on terms charged with emotion or false "sciencey-ness," which is kind of like "truthiness" minus Stephen Colbert. Sometimes, what peddlers of pseudoscience say may have a kernel of real truth that makes it seem plausible. But even that kernel is typically at most a half truth, and often, it's that other half they're leaving out that makes what they're selling pointless and ineffectual.

If we could hand out cheat sheets for people of sound mind to use when considering a product, book, therapy, or remedy, the following would constitute the top-10 questions you should always ask yourself -- and answer -- before shelling out the benjamins for anything, whether it's anti-aging cream, a diet fad program, books purporting to tell you secrets your doctor won't, or jewelry items containing magnets:

1. What is the source? Is the person or entity making the claims someone with genuine expertise in what they're claiming? Are they hawking on behalf of someone else? Are they part of a distributed marketing scam? Do they use, for example, a Website or magazine or newspaper ad that's made to look sciencey or newsy when it's really one giant advertisement meant to make you think it's journalism?

2. What is the agenda? You must know this to consider any information in context. In a scientific paper, look at the funding sources. If you're reading a non-scientific anything, remain extremely skeptical. What does the person or entity making the claim get out of it? Does it look like they're telling you you have something wrong with you that you didn't even realize existed...and then offering to sell you something to fix it? I'm reminded of the douche solution commercials of my youth in which a young woman confides in her mother that sometimes, she "just doesn't feel fresh." Suddenly, millions of women watching that commercial were mentally analyzing their level of freshness "down there" and pondering whether or not to purchase Summer's Eve.

3. What kind of language does it use? Does it use emotion words or a lot of exclamation points or language that sounds highly technical (amino acids! enzymes! nucleic acids!) or jargon-y but that is really meaningless in the therapeutic or scientific sense? If you're not sure, take a term and google it, or ask a scientist -- like one of the folks at Double X Science (seriously--feel free to ask). Sometimes, an amino acid is just an amino acid. Be on the lookout for sciencey-ness. As Albert Einstein once pointed out, if you can't explain something simply, you don't understand it well. If peddlers feel that they have to toss in a bunch of jargony science terms to make you think they're the real thing, they probably don't know what they're talking about, either.

4. Does it involve testimonials? If all the person or entity making the claims has to offer is testimonials without any real evidence of effectiveness or need, be very, very suspicious. Anyone -- anyone -- can write a testimonial and put it on a Website. Example: "I felt that I knew nothing about autism until Thinking Person's Guide to Autism came along! Now, my brain is packed with autism facts, and I'm earning my PhD in neuroscience this year! If they could do it for me, Thinking Person's Guide to can do it for you, too! THANKS, THINKING PERSON'S GUIDE TO AUTISM! --xoxo, Julie C., North Carolina"

5. Are there claims of exclusivity? People have been practicing science and medicine for thousands of years. Millions of people are currently doing it. Typically, new findings arise out of existing knowledge and involve the contributions of many, many people. It's quite rare -- in fact, I can't think of an example -- that a new therapy or intervention is something completely novel without a solid existing scientific background to explain how it works, or that only one person figures it out. Also, watch for words like "proprietary" and "secret." These terms signal that the intervention on offer has likely not been exposed to the light of scientific critique.

6. Is there mention of a conspiracy of any kind? Claims such as, "Doctors don't want you to know" or "the government has been hiding this information for years," are extremely dubious. Why wouldn't the millions of doctors in the world want you to know about something that might improve your health? Doctors aren't a monolithic entity in an enormous white coat making collective decisions about you any more than the government is some detached nonliving institution making robotic collective decisions. They're all individuals, and in general, they do want you to know.

7. Does the claim involve multiple unassociated disorders? Does it involve assertions of widespread damage to many body systems (in the case of things like vaccines) or assertions of widespread therapeutic benefit to many body systems or a spectrum of unrelated disorders? Claims, for example, that a specific intervention will cure cancer, allergies, ADHD, and autism (and I am not making that up) are frankly irrational.

8. Is there a money trail? The least likely candidates to benefit from conclusions about any health issue or intervention are the researchers in the trenches working on the underpinnings of disease (genes, environmental triggers, etc.), doing the basic science. The likeliest candidates to benefit are those who (1) have something patentable on their hands; (2) market "cures" or "therapies"; (3) write books or give paid talks or "consult"; or (4) work as "consultants" who "cure." That's not to say that people who benefit fiscally from research or drug development aren't trustworthy. Should they do it for free? No. But it's always, always important to follow the money.

9. Were real scientific processes involved? Evidence-based interventions generally go through many steps of a scientific process before they come into common use. Going through these steps includes performing basic research using tests in cells and in animals, clinical research with patients/volunteers in several heavily regulated phases, peer-review at each step of the way, and a trail of published research papers. Is there evidence that the product or intervention on offer has been tested scientifically, with results published in scientific journals? Or is it just sciencey-ness espoused by people without benefit of expert review of any kind?

10. Is there expertise? Finally, no matter how much you dislike "experts" or disbelieve the "establishment," the fact remains that people who have an MD or a science PhD or both after their names have gone to school for 24 years or longer, receiving an in-depth, daily, hourly education in the issues they're discussing. It they're specialists in their fields, tack on about five more years. If they're researchers in their fields, tack on more. They're not universally blind or stupid or venal or uncaring or in it for the money; in fact, many of them are exactly the opposite. If they're doing research, usually they're not Rockefellers. Note that having "PhD" or even "MD" after a name or "Dr" before it doesn't automatically mean that the degree or the honorific relates to expertise in the subject at hand. I have a PhD in biology. If I wrote a book about chemical engineering and slapped the term PhD on there, that still doesn't make me an expert in chemical engineering.

There is nothing wrong with healthy skepticism, but there is also nothing wrong in acknowledging that a little knowledge can be a very dangerous thing, that there are really people out there whose in-depth educations and experience better qualify them to address certain issues. However, caveat emptor, as always. Given that even MDs and PhDs can be disposed to acquisitiveness just like those snake-oil salesmen, never forget to look for the money. Always, always follow the money.

Here is a handy short version, too!

ETA: I've also blogged about pseudoscience before here and here; the latter formed the basis for this post. There's also a much longer and very good primer on what the signs of a pseudoscience are here; it's now 10 years old, but it's all still applicable, which just goes to show that some things don't change.

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A version of this essay was previously published at doublexscience.blogspot.com.

Finally Finding Holiday Gifts for Kids With Special Needs

2011-12-12T03:00:00.000-08:00

Shannon Des Roches Rosa
www.Squidalicious.com
www.ThinkingAutismGuide.com

Our family's holiday traditions include: nightly panic over conjuring surprises for the 24 tiny drawers in my kids' advent box, sending holiday postcards weeks after Christmas to a random one-third of the folks we love -- and answering queries from family and friends about holiday gifts for Leo, our eleven-year-old son with autism.I am quietly freaking out over those first two, but thoughtful questions about appropriate gifts for Leo -- I appreciate those, so much.

While finding presents that appeal to my son can be tricky, I've become a pro at it and make suggestions with confidence. Here's my advice for parents, grandparents, aunties, caregivers, godparents or friends looking for that perfect gift for kids with special needs.

Don't get derailed by age ranges on toy labels, because they don't always apply. One of Leo's all-time favorite toys is a Flip Flop Egg Drop sorting tower that also instantly distracts all visiting adults -- yet the box says it's for 18-month-olds.
Try to focus on the child's interests, on what they actually like to do -- this is where interrogating the kid's parents comes in. Leo's auntie know he enjoys winding up things, so she gifted him an emergency flashlight with a crank handle, and he's in heaven. My boy also adores music, but he's better at humming than singing -- so I got him a bag of plastic kazoos. Now he always has a kazoo on hand, and I don't have to worry if one gets broken or lost. He likes to color, but get gets frustrated because his fine-motor skills make staying in the lines difficult -- so we got him dot stamp painters, and the walls of his room are now festooned with colorful creations that make him proud.

With these guidelines in mind, here are some specific gift suggestions:

iPads or Tablets

These are still quite a big deal (and my son Leo remains a huge fan). The big touch screen and wide variety of dedicated apps can make communication, play, and learning so much more easy and independent for kids with special needs. But they're not cheap -- the entry-level model iPad is $499. If, like most of us, you can't cover that cost yourself, consider enlisting family and friends in an iPad fundraiser through ChipIn.com or GiveForward.com.

What if your favorite quirky kid already has an iPad or Tablet? Consider gifting them iTunes gift cards for the former, and Amazon gift cards/credit for the latter -- or specific apps that work well for kids with autism. (Did you know there's a Thomas the Tank Engine app? Leo is obsessed.) Another fun option is a custom iPad skin. If the iPad is not something the child's family can replace easily, consider getting them an Otterbox protective case, or even iPad Insurance. The family will thank you.

The New York Times recently published an article on finding good apps for children with autism, though the cited resources tend to be rather iTunes App Store-centric. There are also some decent resources for AAC and other Android apps (our family was recently gifted a Xoom tablet, and we quite like it. Established companies like OceanHouse Media and newcomers such as Go Go Kiddo have shown a real dedication to the Android market, and a lot of their apps work well for a lot of our kids.

Special Needs Toys and Gear

photo (c) Kelly Nicolaisen

BeyondPlay.com and eSpecialNeeds.com are dedicated to toys and gear for kids with special needs. I want to get my visually-oriented Leo everything in Beyond Play's Sorting and Stacking section, and eSpecialNeeds's arts and crafts page. And Leo's wavy circular balance beam from Beyond Play, a birthday present from two years ago, is still in daily use. These two companies know what makes our kids happy.

Unfortunately, special needs-specific gear can be expensive, e.g., Leo's path cost $200 and was a gift from a generous relative. But you can find equivalents to special needs and therapeutic toys in unexpected places. One of Leo's occupational therapists rarely pays full price for her balance, strength-building, and sensory gear, because she can usually find what she needs in the pilates and yoga sections at overstock outlets like TJ Maxx and Ross. And the best therapy balance ball I've ever found Leo was a $21 "Stability Ball" from Target rather than the same-size $79 version from a specialty company.

You can also make toys and gear. Leo is a fan of sensory bins, which are containers filled with dried rice, beans, or other materials that Leo can plunge his hands into, spend time pouring or fiddling with, or in which we can hide small toys for him to find. And instead of buying Leo pre-made weighted pillows or vests -- the latter being particularly problematic since he grows so fast -- we get cheap pillows, and vests with pockets, filled them with (again) dried rice or beans, and sew the pillow and pockets shut. If you've got handy on tap, you can also make home versions of swings, balance beams, etc. -- don't be afraid to harness your inner MacGyver.

Just Tell Me What to Buy!

Ellen Seidman of Love That Max knocked herself out to create a list of specific recommendations with real-world feedback: Best Toys for Kids With Special Needs: A 2011 Gift Guide
Erm, I also have an Official 2011 BlogHer Gift Guide that includes suggestions for autistic adults as well: Very Necessary Gifts for Kids With Special Needs (this post here is an adaptation of my 2010 guide)
The folks at GoDandelion have compiled an excellent holiday gift guides roundup, so if you'd like more guidance, please hop on over!

Audio books are one of my favorite gifts for Leo and his friends, as listening to them is something our families can while spending all that time driving between home, school, and therapy appointments. I also love audio books for Leo because they are one way to apply the Least Dangerous Assumption, and give him the benefit of the doubt. They let him listen to stories without the pressure of having to "listen to Mommy" or process pictures or video in addition to sound. And -- bonus -- he can listen to favorite stories like Dr. Seuss and The Very Hungry Caterpillar, over and over and over again, and can even control playback himself if the stories are on his iPad, iPod touch, or other iDevice/player.

Some quirky kids like the Aspie teen Jacob from Jodi Picoult's novel House Rules can be more interested in tools than toys. Educational Innovations is my favorite site for gear- and science-minded kids, as their selection ranges from simple machines to Jacob's beloved forensics kits.

Kids with autism are often drawn to Lego, which is not hard to find -- but did you know you can build your own custom Lego models? An opportunity to combine two obsessions!

Does the child use a wheelchair? So do these two dolls: Avatar's Jake Sully, and Barbie's Paralympic Champion friend Becky.

Would the kid enjoy a variety of activities? I remain grateful to a local business, My Busy Kits. Though she no longer produces the kits herself, co-founder, Lorraine (who now co-helms the powerhouse Apps resource site Moms With Apps) has left behind advice for creating these wonderful kits on your own.

Leo and his sisters have always liked small laceboards, Wiki Stix, crayons markers, retractable tape measures (oooh yeah), black velvet coloring pages (which provide a sensory guide to help Leo stay in the lines), plastic scissors, activity pads, and a blank spiral notebook. I have been complimented on how well my children behave when we're out at restaurants -- when the truth is, they are often too busy playing with their My Busy Kits to be disruptive.

Do you have favorite gifts, guides, or advice for finding gifts for kids and people with autism? Leave a comment below.

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A version of this essay was originally published at BlogHer.com

Mother, Afraid of Costs of Autism, Kills Child

2011-12-09T03:00:00.000-08:00

Paula C. Durbin-Westby
paulacdurbinwestbyautisticblog.blogspot.com

I am writing here about one aspect of this horrible killing of a six-month-old baby, that of the mother's fears about the costs of having an Autistic child:

http://www.huffingtonpost.com/2011/12/06/stephanie-rochester-trial_n_1131305.html

Whether or not the parent was not legally sane at the time of the killing is not what interests me. She was coherent enough at one point to express her fear that the child would cost her too much, both emotionally and financially.

"Rochester told detectives that she thought having an autistic child would emotionally and financially “ruin” her life."

Let's take a look at some of the things she might have read before she made a decision to kill a six month old baby. While there may have been other reasons for the infanticide, including her state of mental health, the following examples could greatly add to her worries.

First, let's look at common "information" about autism that includes comparisons with deadly diseases (which autism is not), extremely inflated financial "information" that is not even close to the realm of reality (debunked by Joseph at Natural Variation, see below), and generally negative and alarmist views of autism. Autistic disability rights activists and our supporters have been decrying the use of these sorts of "devastating disorder" statistics and this sort of information for years.

I am not implying that any of the organizations or agencies I will list are in any way responsible for this particular crime, of course. I do suggest that these groups, which have the power to influence how people think about autism and other disabilities, take your role seriously and think about the message you are putting out and possible unintended consequences.

Autism Speaks has this to say (in fact, if I recall correctly, AS is the organization that came up with this "fact"):

"More children will be diagnosed with autism this year than with childhood cancer, juvenile diabetes or pediatric AIDS combined."

http://www.autismspeaks.org/what-autism

The Arc's first page on "I want to learn about Autism and Autism Spectrum Disorder" states, in its second paragraph, that it is estimated that one in 110 children is diagnosed with autism,
"...making autism more common than childhood cancer, juvenile diabetes and pediatric AIDS combined."

http://www.thearc.org/page.aspx?pid=2536

The fact that these three childhood diseases, which are dangerous and scary, but relatively rare have to be lumped together and autism is still "more common" than them is an exercise in fearmongering.

The Autism Society "estimates that the lifetime cost of caring for a child with autism ranges from $3.5 million to $5 million.."

http://www.autism-society.org/about-autism

The Autism Society got its figures from this Harvard School of Public Health report. The Harvard press release has the title of "Autism Has High Costs to U.S. Society":

http://www.hsph.harvard.edu/news/press-releases/2006-releases/press04252006.html

Armed with all this "knowledge," one could easily be desperately afraid, whether or not one has any mental health condition. If mentally unhealthy, as this article suggests, these statistics running around in her head could have put her over the edge into doing something unthinkable.

http://www.dailymail.co.uk/news/article-2070821/Mother-smothered-baby-feared-autistic-insane-postpartum-depression.html

Most parents won't kill their Autistic kids (thanks, Mom!). These kinds of statistics, however, many of them not much more than speculative, do fuel people's fears about autism.

For a good article debunking the "costs" of autism and the "Autism has High Costs to U.S. Society" idea:

http://autismnaturalvariation.blogspot.com/2006/11/debunking-costs-of-autism.html

It would be questionable on my part to assert that the abovementioned organizations have any direct responsibility for the actions of a single individual, however the almost ubiquitous repetition of fear- and anxiety-inducing statistics on the websites and other communications of large organizations amount to a kind of pernicious influence on both parents of Autistic children and the general public, and sometimes, unfortunately, on Autistics ourselves.

NOTE: I have made two changes since I first wrote this article two days ago. First, I removed one sentence. Some readers of my first version of this article pointed out that my sentence "Most parents won't kill their Autistic kids" does not take into consideration that prenatal testing could be used for selective abortion. I have decided that the prenatal testing issue, which is of importance, and the topic of this particular crime, should not be conflated so have removed that reference in the body of this post.

The second change I have made is to replace the word "murder," which has certain legal meanings, with the words "killing," and "homicide." I share the sense of moral outrage that many people have expressed about the smothering of a baby, and have made the change with some reservation, but it is not always correct to refer to a killing by a person who is legally insane as murder, so I will refrain from doing so in this article.

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This essay was previously published at paulacdurbinwestbyautisticblog.blogspot.com.

Surviving the Holidays with Autism

2011-12-07T03:00:00.000-08:00

Corina Becker
nostereotypeshere.blogspot.com

Up here in Canada, we had our Thanksgiving back in October, so we're all getting ready for Christmas/Hanukkah/other winter holidays. I'm going to be very honest: I celebrate Christmas, so my default for the holiday season is Christmas. This doesn't mean that stuff I say cannot be used for other holidays, it's just a religious difference, use as need.

But I'm kinda using my own experiences for this, so I'm going to resort to my default of Christmas. Also, I'm mainly addressing parents in this post, but I'm certain that some of these pointers can be used for Autistics of all ages.

But yes, the winter holiday season is approaching, and it's a very busy, hectic and overwhelming time of year, full of all the things that set off Autistics and other highly sensitive individuals. The season is full of parties, religious events, meeting a lot of people and having relatives all crowd together, malls full of shoppers and noisy music, and regular family festivities.

From my own experiences, there's nothing really new in terms of needs and challenges, just that the time of year makes everything more chaotic and intense. Add in the excitement for a countdown, the anxiety of a lot of surprises, plus a lot of the goodies that get passed around, and it's no wonder that things get overwhelming. The trick is to manage the new sources of over-stimulation and stress while still participating in the holiday so that everyone can enjoy.

Social

The holidays are filled with meeting people, lots of relatives, crowded house, parties, and other social complications that can make the basics, such as manners for receiving presents, more difficult to remember and perform.

Please keep in this in mind when interacting with others, that even if you know an autistic that is capable of being more polite, the overwhelming pressure on their social skills (and other skills) may mean that they are functioning on a lower level than their norm. It may be taxing for them to remember simple Please and Thank Yous.

Be mindful of this, and be patient. Little reminders on manners are okay, but don't be too insistent, because this is a very hard time of year and keeping the stress levels as low as possible all around is a good idea.

At events where its available, explain your and/or your child's needs, find a time-out corner for breaks, be mindful but try not to freak out at little slip ups, and if you find the stress becoming too high, leave early. Understanding friends and family won't mind too much, and you can get back to the ones who do. There might be some grumpy faces, but catching the stress at "grumpy" is better than "meltdown," where pretty much anything can set off a meltdown. So be very mindful of the warnings signs.

And if you think that so many events is too taxing, skip them. Take a break and pace yourselves. Friends and family members may not totally understand or be happy about it, but you're taking care of both your autistic child, and/or yourself. You could have a relaxing night at home, everyone doing a relaxing activity, maybe do something special if you think everyone can handle it.

I know that there are events that you can't skip, like certain religious events, or that mandatory company party. And to be honest, some of those are, well, boring for kids, and overwhelming in general, especially if it's formal (see sensory below). But don't be afraid to find a babysitter and go, even if it's for a little while so that you can fill the "I attended" requirements.

As for babysitters, it's good to give them some information about autism, so they know, but don't expect them to be professional respite workers. Look for someone who is friendly and flexible, and maybe have them meet the kids a few days in advance, if it's a new babysitter, so that everyone knows each other and you can see whether they get along. My parents tried to keep the same few babysitters, so even if there was an emergency, my brother and I would know the babysitter.

Also, parents, don't be afraid to take the time to go off by yourselves and have a night together. Everyone needs a break every once in a while during the holidays.

Sensory

You probably could name quite a few sensory issues we Autistics have this time of year, as every thing becomes more intense, and we tend to react more because of that. I'm talking the crowds in mall, the rushing here and there, all the loud music and holiday jingles, strange and new foods, smells and textures, and winter clothes.

Again, a lot of it is the same issues each of us have, just more intense during the holiday season. As a result, it may be better to plan shopping trips for times when it's not so busy, or if that's not possible, to shorten the trips as to accommodate a lowered tolerance limit. It'll probably mean more trips, but it might also reduce overload.

Another sensory issue is foods, and there are many strange things to eat, with rather strange names. Don't worry about having your autistic test new foods; while it's certainly an opportunity to try new things, it may be more that they can handle during the holidays. If they consent to try a bite of something you think they might like, awesome. But be okay if they decide not to try it right now.

As for music, if you want to have it on, keep the volume down. If there's people over, well, you might want to just turn it off, because it becomes another source of noise.

The final issue I can think of for sensory is clothes. For me at least, this is big challenge during the winter months. I find that during winter, there's less moisture in the air, and so my skin becomes dry and more sensitive. This means even more sensitive to the feel of cloth, textures, and seams, especially after bathing when water has dehydrated my skin. Even sensory-soothing clothing can become irritants during this time of year.

To counter-act difficulties dressing due to this, I suggest bathing well in advance of events to give the skin time to hydrate and produce its own oils.

Also, in winter, fabrics are heavier, which is good for those who need more sensory input, but clothing contains more seams and restrictions of movement. Given the time of year, some articles of clothing are necessary to wear outside. So try to use the hat, mitts, scarves and other winter gear that your child seems able to wear the longest, but when possible, limit the amount of time they need to be wearing their gear.

As for the times where formal wear is required, it becomes a matter of how much your autistic can tolerate. Try to buy formal wear that can be worn for long periods of time, or else bring along a spare set of clothes, just in case. Otherwise, let your child wear what's comfortable and looks good.

Schedule

Another source of distress during the holidays is the deviancy from our regular schedules. Understandably, there's a lot of things to keep track of, and it can get very busy and overwhelming. What I think is key is keeping as much of the regular schedule, with more cool-down periods. The normalcy of it will be grounding and calming, reassuring your autistic that things are still under control, and it helps transitioning between the holiday season and the non-holiday season.

For all the different events and activities, if possible and when appropriate, try to include your autistic in the decision making process. This will help them to be involved and be more informed about what's happening. This also gives them the opportunity to express what they'd like to do and experience the holiday better.

I also suggest to try to do the same things year after year; this makes the holiday a part of the yearly schedule, and as time goes on, may make the holidays easier as your autistic has a better idea of what to expect.

What I find is that after the holidays, or any big and draining events, I have a period of transition and adjustment to get back into the regular schedule. Sometimes this includes period where I regress in skills, tolerance, and energy as I am recovering from the event, especially when I have been unable to maintain my regular schedule and practice skills.

During this recovery period, be patient and mindful that your autistic may be drained from the holiday, get back into the regular schedule as soon as possible, and allow them to have more quiet time periods. For me, to recover from a weekend usually takes about a week, but it's different for everyone.

As well as what I have above, I asked my mother for some tips and advice on handling the holidays. After all, she did raise myself and my brother, both of us with a wide range of difficulties for this time of year. So, from my mother:

Don't do too much on any one day; usually one event per day is enough.
Each morning, share that day's schedule with the kids, and only that day's schedule. Don't overwhelm them with future days and activities; stay day by day. Also have it that the kid can carry it along and refer to it.
Keep clothes soft and comfortable.
Have quiet time, and let them know that it's quiet time, so that they can relax properly.
For children who have a hard time staying at the table, have a candle on the table. Makes meal times more special, and keep their attention so they don't leave. Keep a plate under the table, and watch for fingers that start playing with wax. (Candles are a two-edged sword; can keep kid at table, but they may want to play with the melted wax)
Always serve some of the kid's favourite foods at every meal, so that if they don't like the big meal they at least have something to eat.
Make sure that relatives and guests know the kid's needs.
Limit the amount of people coming over and in the house at any given time.
Have a safe place for your kid to withdraw.
If you have a large family gathering, rent a hall. But make sure to keep a safe corner.
Don't force the kid to do greetings and farewells; it's too much commotion in the front hall.
Allow your kid to choose toys to hide away that they do not have to share, but at the same time, have your kid pick toys that they do have to share with other children.
If playing music in the background, have calm music and be careful of the volume.
When opening gifts, clean up the boxes and wrappers as you go, so that it's not too chaotic. After opening, take gifts to each person's respected places to keep the central space calm.
If the kid like puzzles, create a puzzle corner where they can interact with others one-on-one as they work on a puzzle.
Find some way that the child can contribute and make the holiday their own. Give them suggestions and work together on whatever the child chooses, such as help decorate, help making food, setting the table, putting stamps on and licking shut Christmas card envelops, etc.

If you have any questions about this list, or you think I've missed something, feel free to ask and comment.

Merry Christmas and Happy Holidays!

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This essay was previously published at nostereotypeshere.blogspot.com.

An Autistic's Advice: Ten Tips for Teachers

2011-12-05T03:00:00.000-08:00

Lydia Wayman
autisticspeaks.wordpress.com

There is so much misinformation and so many misperceptions out there about people with disabilities, and that includes autism. I’ve read some things lately, comments by teachers or people who will teach, that have sent me reeling. In typical Lydia fashion, I will write a Ten Things in an attempt to dispel these myths about people like me.

1. People with disabilities are not always happy, joyful, eternally childlike, or “perfect angels.” People with disabilities are humans.

This means that we experience the full range of human emotion, including the uncomfortable ones, such as anger and sadness. Some of us are generally happy, just like some people without disabilities are generally happy, but others of us are confused, angry, hateful, manipulative, and so on. Autistic children display inappropriate and unwanted behavior just like typical children do.

2. Always assume we understand everything you’re saying when we’re in your presence, if nothing else, just in case we actually do.

I’ve heard teachers and parents talk together about a child like the child isn’t even there. Not cool. Especially with autism, some children understand everything you say but have no means of expression. Many children have been labeled with ID and are, in fact, brilliant. For years, parents and teachers talked like the child wasn’t there … when he was entirely there. He was hurt. And, unlike a typical child, he has no way to express that hurt.

3. Do everything you can to treat us age appropriately.

I look and act younger than my nearly-24 years, but I like to be treated like the intelligent and sentient being that I am. If you think you need to use baby talk to reach a child … try music, dance, art, sign, PECS, sports, typing … and so on.

4. Please reduce noise … and not just auditory noise.

There is visual noise, smell noise, thought noise, and tactile noise. If your room has fluorescent lights, use the blue light covers available on Amazon. Cover busy carpets. Tile floors reflect light which makes them hard to walk on. Everyday school materials (Sharpie, glue, paints) can lead to intense reactions for people with autism. Never ask more than one question at a time. This causes thoughts to build up and collide without ever making it out of my mouth. Finally, offer a sensory corner that is dark and quiet, where a child can rock in a chair, lay in a beanbag or under a weighted blanket, or spin.

5. Offer as many means to communication as you can think of!

Verbal communication is not enough. For me, the ticket is typing. For other children, it may be art, or athletics, or PECS, or Sign Language, or movement, or a certain kind of music, or design, or building … You may find that you can connect with a child via his preferred method of expression. I should note here that Facilitated Communication, or FC, is a perfectly viable option for some people. There have been times that I have become dysregulated to the point that I could not type, and tactile input from someone would have made it possible for me to communicate. It can be done wrong, but when done right, it can open doors.

6. Always assume intelligence. Did you hear me on that? ALWAYS assume intelligence.

7. Paint a picture of a person rather than a disability.

Rather than describing children as, “Jimmy, the low-functioning autistic child,” try describing the child as, “Jimmy, an autistic boy (or a boy with autism, whichever you prefer) who has poor expressive but great receptive communication, likes to spin, and is obsessed with dogs.”

8. Routine, routine, routine.

If you lived in a world as confusing as ours can be, you would want as many things to be as predictable as possible. If something like … opening meeting is always the same at school, and then it changed one day, it would be like you missing your morning cup of coffee, driving a different car on a different route, parking in a different spot, and teaching in a different classroom. You’d be upset, too! And the child who has little to no means of communication has no way to say, “Hey, not cool, and I’m really frustrated,” like you would. They have only their behavior to use. Visual schedules are huge for ASD kids. I even have them around my apartment, not with pictures but with words.

9. Be careful how much you expect from a child who is not using is “first language.”

As I said, I type. But you can’t expect the same degree of intelligence and insight to show through when I speak. Imagine if you had to spend your whole life writing with your nondominant hand. Well, for me, speaking is like doing just that. Be patient. We can learn and we can improve, but we need your belief in us and your patience.

10. Praise us when we’ve earned your praise, but not for every little move we make, or it becomes meaningless.

Build on our strengths as you work on our weaknesses. We are proud of ourselves when we succeed, so help us to see what we can do and become! Teach us to dream!

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A version of this essay was previously published at autisticspeaks.wordpress.com

Facing My Fears About Learning

2011-12-02T03:00:00.000-08:00

Brenda Rothman
mamabegood.blogspot.com

I have this image in my head whenever anyone says "learning." Learning means a teacher standing in front of students, who are sitting at desks, listening quietly to the teacher talk facts, figures, and concepts. Anytime I say "learning," I think "academics," by which I mean "readin', writin', and 'rithmatic." 'Cause I'm a product of that kind of learning. From elementary to college to law school, learning was sitting in a room with a large group of people and memorizing. Jeez, the number of things I've memorized, the number of meaningless mnemonics.

That's why I think that the only way a child learns is from school, from an adult telling them facts. But that means a child is incapable of discovering something on his own. That he can't explore and figure things out without an adult telling him to do so or telling him what it means. Do I think children are slow? Or completely incurious? I must think that adults are the only source of knowledge, that we download to kids like they're empty iPads without apps.

Or is it more personal? Do I think it's my child's problem? That because of his challenges, he is incapable of learning without a lot of prodding, pushing, repeating and repeating? I don't think I could take much of that kind of "learning." Is my opinion that low about my son's abilities, his curiosity? I must think that what schools say is important about the world, development, and success in life is really the right answer, the only answer. What if it isn't?

My child doesn't learn best from adults talking at him. He learns from the world. If he asked you, "what noise does a deer make," what would you say? I told him that a deer doesn't make a noise. But Jack discovered that they do make noises, breathy, huffing snirks and snorts. He learned deer from deer -- what they smell like, look like, feel like, what their poo looks like, what they eat -- from his own experience, not from me. By going out in the world and touching, feeling, holding, watching, listening.

And he doesn't do a whole lot of learning sitting still and listening. He's a physical objects kinda guy. The minute we finish reading a book, he's up to get a three-dimensional version of what we were reading about. He wants to build it, make it move, move around in it. He goes from 2-D to 3-D and that's how he learns, really absorbs the idea and makes it his own. We've built a cemetery, gift shop, ancient Egypt, the Wild West, the White House, and a bird house.

Adults are not the keepers of knowledge. I need to get out of my child's way and let him learn -- in his own way, his own time, his own interests.

I'm still figuring out how to support him as he learns -- like not correcting his every mistake. As if he can't learn if I don't tell him everything he's doing wrong. He really needs a safe place to make mistakes and make lots of them. Every time he says, "The General is a gas engine," and I say, "For real, it's a steam engine." he sighs at me. Can't I just let it go? He knows. Or he'll figure it out. Let him play around with ideas.

I also have to stop myself from asking teacher questions. 'Cause Jack already knows how to combat that. Anytime anyone asks him, "Do you know what blank means?," he says, "No." Even when he knows. Especially when he knows. 'Cause he's not playing that game. He's not here to show you what he knows or to be taught anything. He wants to learn it his way.

Besides, the things that have stuck with me the most from my education are not the whats, the memorized things, but the how -- how to learn. How to question, analyze, think critically, hunt down the sources, consider two sides, find more than one answer. To be persistent, objective, consistent. To discover my own biases. To be open to new ideas. To use my strengths and figure out alternatives for my weaknesses. To be curious. To find the things that empassion me, that make me want to keep reading about them, keep investigating, keep learning.

Kinda like being a reporter. With a tweed hat. Or an adventurer. With fur boots.

The passion, the curiosity, the how of learning -- those aren't confined to school. They don't come from memorizing. They merely need the chance to flourish, in a safe environment without fear or pressure, from people who open up the world and say, Wow, will you look at that.

That's it. Exactly. Not the schools, the degrees, the prestigious jobs. If I can stop being afraid of what he's not learning, of what other kids are studying, of what schools they're getting into, what colleges. If I can keep the "wow, will you look at that" spark in him, the passion, curiosity, openness that makes him want to keep finding out things.

That's what I need to remember. Learning is not a teacher lecturing. Learning is not who got into the best school. Learning is a kid saying, Wow, will you look at that.

That's not gonna stop me from the twinges every once in a while. I'll hear about a friend's child and my mind will scuttle to the dark corners. My child's not doing that, it will whisper. My child's not in school, not at grade level, not writing, not reading yet, not reading yet, not reading yet.

And I will have to sit my mind down in a chair and repeat firmly, "Learning is not who got into the best school, who gets the best grades, or the second- or third-best. Learning does not have a grade-level."

And then I will lean down and whisper, "Learning is here with you now. Learning is following what he loves."

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A version of this essay was published at mamabegood.blogspot.com.

Person-First Language: Why It Matters (The Significance of Semantics)

2011-11-30T03:00:00.000-08:00

Lydia Brown
autistichoya.blogspot.com

At the Adult Services Subcommittee's final meeting in late July, much to do was made about semantic disagreements -- "ASD individual" versus "individual with ASD," and of course, the dreaded "person with autism" or "person who has autism" versus "autistic person." These issues of semantics are hot button issues, and rightfully so.

Words and language are powerful tools by which an individual can express ideas, whether abstract, actionable, or concrete. As a writer and editor, I know firsthand that language and the meanings we attach to words very much impact, influence, develop, and change the attitudes that we have toward the subjects of discussion. That is why people are easily insulted or upset by word choices. Changing a phrase -- even if it holds the same literal meaning -- alters the subtle connotations and nuances of the speech, and communicates a different meaning and context than the original phrasing.

In the autism community, many self-advocates and their allies prefer terminology such as "Autistic," "Autistic person," or "Autistic individual" because we understand autism as an inherent part of an individual's identity -- the same way one refers to "Muslims," "African-Americans," "Lesbian/Gay/Bisexual/Transgender/Queer," "Chinese," "gifted," "athletic," or "Jewish." On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as "person with autism," "people with autism," or "individual with ASD" because they do not consider autism to be part of an individual's identity and do not want their children to be identified or referred to as "Autistic." They want "person-first language," that puts "person" before any identifier such as "autism," in order to emphasize the humanity of their children.

Yet, while I have been familiar with this rift among the autism community over the use of "person with autism" as opposed to "Autistic person," I hadn't fully explored the diversity of perspectives on the topic until now.

During last Wednesday's meeting, one subcommittee member, who I believe is the parent of an Autistic child, and an Autistic self-advocate expressed disagreement over the terms. Feedback from one of our members suggested changing "ASD individual" in our report to "individual with ASD." The Autistic self-advocate sitting beside me, who also has an Autistic brother, voiced her objection to use of the term. "I disagree," she said as the suggestion was read aloud. "I'm not a person with autism; I am Autistic."

Immediately, a mother sitting next to her responded, "I come from a time where that word, 'autistic,' had -- still has -- a negative meaning. It's offensive. When someone refers to my son as 'the autistic,' I cringe at that word; I get ready to defend him."

After our meeting, I took the time to explore a wealth of opinions online about the use of person-first language -- from those who support it and those who oppose it. The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person instead of a condition. And that's a great idea. In fact, when discussing specific people, I have never once heard anyone -- self-advocate, parent, teacher, or otherwise -- refer to a person as anything except by his or her name. I can't think of any teacher -- at least any decent one -- who would refer to a student as "that Autistic kid," or "that kid with autism." And I certainly can't think of any parent who wouldn't refer to his or her child by name.

But why are we self-advocates so opposed to this terminology? Aren't we all about de-emphasizing and correcting inaccurate, misleading, and harmful stereotypes and attitudes? Right? From that other perspective, you would think we would support the use of person-first language, because we want to be seen as people with equal rights, value, and worth to non-Autistic people. But we don't. Because when people say "person with autism," it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn't true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as "people with cancer" or "people who have cancer," as opposed to "cancerous people," the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person's identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person's identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

What I found most interesting in reading this selection of articles and blog posts is that many of the same arguments are used for both positions, but with separate sides, naturally, coming to very divergent and contradictory conclusions.

Firstly, I saw in at least two articles in favor of using "person with autism" that the authors strongly oppose language referring to disabilities like "suffers from," (i.e. "Alan suffers from Asperger's syndrome;" "Joey, an autism sufferer;" etc.) which has traditionally been a talking point of self-advocates as well. I do understand that not everyone who supports the use of terminology "person with autism" would disagree with language like "suffers from," but it is still interesting that there are those who do. It suggests a fundamental shared value -- that people with different neurological conditions are not "suffering" because of their difference or disability.

Secondly, as alluded earlier, those on both sides want to emphasize the value and worth of the person. Person-first language advocates believe the best way to do this is through literally putting the noun identifying "person" before any other identifiers. (As noted in one of the other articles opposing person-first language, however, English is a language that puts adjectives before nouns, whereas there are multiple languages that always place adjectives after nouns. In Spanish, for example, "person with autism" is "persona con autismo," while "Autistic person" becomes "persona autística." In both cases, autism/Autistic follows the noun.) Person-first language opponents believe the best way to do this is by recognizing and edifying the person's identity as an Autistic person as opposed to shunting an essential part of the person's identity to the side in favor of political correctness.

It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am.

Lastly, what is most interesting indeed is the shared expressed sentiments that using or not using person-first language is necessary to change and shift societal attitudes toward Autistic people. Returning to the premise of this article, this is the sole reason why this debate continues to be argued and why many people on both sides regularly emerge upset and feel personally attacked. Language does play a large role in shaping societal attitudes.

But let's think about what we are doing when we use these terms. When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people -- and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

That's why, when I read a few articles scoffing entirely at the debate, and dismissing it as ultimately irrelevant (insisting that each person should use the terminology he or she prefers and to ignore what other people say or write), I was concerned. The question of person-first language is definitely important and cannot be disregarded. The way we use language affects those around us -- in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as "a silly semantics argument" denies the power of language.

What does, however, disturb me is the vitriol during debates about this (and similar) topics in the autism community. While it is, as repeatedly emphasized, an important debate with huge ramifications both short-term and long-term, hurling ad hominem insults, making baseless accusations, and shouting over tables (or computer screens) at the people on the other side ultimately demeans both you and them. It shows great immaturity, inability to civilly and peaceably discuss important topics, and insensitivity to the personal experiences vested in each of us with a stake in this debate. Having strong opinions on a topic and being able to have a respectful discussion with someone else are not mutually exclusive.

So what can we do moving forward? Or, more importantly, what should we do? To those of you who use "person with autism," I will always respect your Constitutional right to express yourself however you like, but I urge you to reconsider the consequences of using such language. To those of you who use "Autistic person," I urge you to consistently use such phrasing everywhere possible, whenever discussing autism and issues that affect Autistic people, and to develop coherent, rational explanations for why you prefer this terminology, so that you can engage in such mutually respectful and civil exchanges with others.

That, actually, goes for everyone. If we ever want to accomplish anything as a community, as a movement, or as advocates, we cannot allow ourselves to be constantly divided by infighting and vicious bullying -- and yes, that occurs from all sides of these debates, not just one. It is imperative that we learn to engage critically and respectfully with one another, and to value each individual's voice and feelings as equally important. Otherwise, we'll become even more dysfunctional than my subcommittee has been in recent months.

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Interested in other perspectives? Here are some links to feed your curiosity.

(A note: I believe fully in the freedom of expression and belief, and do not believe in censorship of people with whom I disagree. Thus, I have no policy about excluding or ignoring any particular individual, organization, or idea when linking offsite. Links offsite are not to be construed as endorsement or acceptance of the ideas and opinions expressed therein. [Emphasis added -Eds])

People who use "autistic" or "autistic person":

Why I dislike "person first" language by Jim Sinclair, founder of Autism Network International (ANI) *full text
'Autistic' or 'person with autism'? by Jean Winegardner
Autistic vs Person With Autism by Karin
Autism-first Language by Elesia Ashkenazy, National Advisory Council of the Autism NOW Center
Autism as a lifestyle as seen through the eyes of an autistic adult by Kassiane Sibley
I don't have autism. I am autistic. by Kassiane Sibley
On Language by Gordon Darroch
Climb off your high horse already by Rob Gorski
Autism First (Again) by Jeff Gitchel
People-First Language by Twitchy Woman

People who use "person with autism" or "person who has autism":

People First Language: What it is and why it matters by the Arc of Anchorage
Put me first: The importance of person-first language by Mary Tobin, M.Ed.
Person First Language by Katie Nelson
An Autism Parent on Kathie Snow's People First Language by Julie L.
People First Language by Kathie Snow (PDF)
Olmsted on Autism: "Retards" and "Autistics" by Dan Olmsted
The Power of Language by Michele Guzmán of the University of Texas Hogg Foundation for Mental Health This was written in direct response to the Autistic Hoya article.

People who use both interchangeably:

"Has Autism" versus "Is Autistic" A muddled debate from Autism and Oughtisms
The Last Word on "Person First" Language by Stuart Duncan
Is It "Autistic Person" or "Person with Autism"? by Stuart Duncan

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A version of this essay was previously published at autistichoya.blogspot.com

A Critique of the Empathy Quotient (EQ) Test

2011-11-28T03:00:00.000-08:00

Rachel Cohen-Rottenberg
www.journeyswithautism.com

The Empathy Quotient (EQ) test was designed by Simon Baron-Cohen and Sally Wheelwright, and is included in their 2004 paper The Empathy Quotient: An Investigation of Adults with Asperger’s Syndrome or High-Functioning Autism, and Normal Sex Differences. It is frequently used as one of the primary measures of empathy in autistic people, and is often brought forward to support the twin contentions that a) autistic people have below-average levels of empathy and that b) autism is, by definition, a low-empathy condition.

The test consists of a series of 60 statements, to which the respondent must answer one of the following:

Definitely agree
Slightly agree
Slightly disagree
Definitely disagree

The resulting test scores are interpreted in the following ways:

0 – 32 = low (most people with Asperger Syndrome or high-functioning autism score about 20)
33 – 52 = average (most women score about 47 and most men score about 42)
53 – 63 is above average
64 – 80 is very high
80 is maximum

As is standard for questionnaires and psychological tests, there are a number of “filler statements” that have nothing to do with the purpose of the test. On the EQ test, twenty filler statements are inserted, in the words of the authors, “to distract the participant from a relentless focus on empathy.” (Baron-Cohen and Wheelwright, 166)

I’ve gone through all 60 statements on the EQ test and attempted to categorize them under the following headings:

Filler statements
Statements regarding cognitive empathy
Statements regarding emotional/affective empathy

As far as I can tell, statements 2, 3, 5, 7, 9, 13, 16, 17, 20, 23, 24, 30, 31, 33, 40, 45, 47, 51, 53, and 56 are the filler statements. I won’t be critiquing them, since they have no impact on the EQ score.

Regarding the other two categories, the authors are quick to point out that, when setting up the test, they attempted to make a distinction between statements designed to measure cognitive empathy and statements designed to measure emotional/affective empathy, but gave up on the effort because there is so much overlap. I am very cognizant of the complex nature of the overlap, but I’ve separated these statements out, mainly for the purpose organizing my critique. In the category of cognitive empathy, I have also separated the statements about reading nonverbal cues from the statements about perspective taking.

The critique consists of these components:

The Introduction provide a discussion of the basics of the EQ test.

Part 1 provides a definition of cognitive empathy, along with a critique of the statements on the EQ test concerning cognitive empathy and nonverbal cues.

Part 2 examines the statements on the EQ test that cover cognitive empathy and perspective taking.

Part 3 provides a definition of emotional/affective empathy and includes a consideration of the statements on the EQ test that speak to this form of empathy.

The Conclusion brings together my thoughts about the general nature of the test and its implications for autistic people.

Part 1

Definitions

Of the 40 statements geared toward measuring empathy on the EQ test, the vast majority -- 27 -- have primarily to do with cognitive empathy. Of course, some of these statements encompass both cognitive and emotional components, but in them, a lack of cognitive empathy is an implicit explanation for the lack of a normative emotional response, so I have included them under the cognitive empathy heading.

In The Empathy Quotient, Baron-Cohen and Wheelwright draw on a definition of cognitive empathy as “using a ‘theory of mind’ (Astington, Harris, & Olson, 1988; Wellman, 1990) or ‘mindreading’ (Baron-Cohen, 1995; Whiten, 1991).” According to the authors, cognitive empathy encompasses “setting aside one’s own current perspective, attributing a mental state (or ‘attitude’) to the other person (Leslie, 1987), and then inferring the likely content of their mental state, given the experience of that person.” (Baron-Cohen and Wheelwright, 164)

For those not familiar with the term “theory of mind (ToM),” Baron-Cohen defines it in the following way in his 2001 paper Theory of mind in normal development and autism:

A theory of mind remains one of the quintessential abilities that makes us human (Whiten, 1993). By theory of mind we mean being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds. Difficulty in understanding other minds is a core cognitive feature of autism spectrum conditions. The theory of mind difficulties seem to be universal among such individuals.” (Baron-Cohen, 3)

I’m including the preceding paragraph not only for purposes of definition, but also to illustrate a) Baron-Cohen’s assumption that autistic people lack a ToM, and b) to make clear the rather dire consequences of this conclusion for autistic people -- that is, that we lack one of the essential qualities of full humanity. Because the definition of cognitive empathy in use on the EQ test is based on an equivalence with ToM, and because Baron-Cohen considers ToM a quintessential component of humanity, it’s vitally important to critique the sections of the EQ test that contribute to his conclusions about cognitive empathy and autism.

I want to point out that the definition of cognitive empathy being used in Baron-Cohen and Wheelwright’s paper is quite different from the one that I have been using for some time. In my understanding, cognitive empathy has to do with being able to read nonverbal cues (body language, facial expressions, the expressions in the eyes, and so on) in order to intuitively “tune in” to what another person is thinking or feeling. I have not been using it simply to cover being able to see things from another person’s perspective or to understand the other person’s mental state.

To me, these are two separate, albeit related, processes. I have difficulty reading the nonverbal cues of non-autistic people, but I can’t remember a time in my life that I didn’t ask numerous questions or make numerous observations in order to understand the perspectives of other people; and I certainly can’t recall ever making the assumption other people’s thoughts and feelings were exactly like my own in every instance. In fact, my perception that my family members had values, and perspectives, and thoughts, and feelings that were altogether different from my own engendered a deep sense of aloneness in me from the time I was very young. Feeling like a stranger in a strange land is common for autistic people; the sense of being an anthropologist from Mars is a reflection of the fact that we are often keenly aware that other people perceive the world in ways vastly different from our own, and that we seek to make sense of it.

Given that I consider the reading of nonverbal cues and the ability to understand the perspective of others two separate processes, I will speak to the statements concerning them separately.

Statements that measure being able to read nonverbal cues

Here are the 15 statements on the EQ test that measure the respondent’s ability to pick up nonverbal cues:

1. I can easily tell if someone else wants to enter a conversation.
8. I find it hard to know what to do in a social situation.
10. People often tell me that I went too far in driving my point home in a discussion.
14. I often find it difficult to judge if something is rude or polite.
19. I can pick up quickly if someone says one thing but means another.
26. I am quick to spot when someone in a group is feeling awkward or uncomfortable.
35. I don’t tend to find social situations confusing.
41. I can easily tell if someone else is interested or bored with what I am saying.
44. I can sense if I am intruding, even if the other person doesn’t tell me.
46. People sometimes tell me that I have gone too far with teasing.
52. I can tune in to how someone else feels rapidly and intuitively.
54. I can easily work out what another person might want to talk about.
55. I can tell if someone is masking their true emotion.
57. I don’t consciously work out the rules of social situations.
58. I am good at predicting what someone will do.

I’ll begin by pointing out the inherent biases of these statements. They were clearly written by non-autistic people, with the assumption that the person being observed by the respondent is non-autistic, and that the social settings to which they refer are composed mainly of non-autistic people. (For example, the statement “I find it hard to know what to do in a social situation,” assumes a conventional social situation in which most, if not all, of the other people are non-autistic.) In other words, the statements are created by “normal” people, to measure responses to “normal” people, in “normal” settings.

When it comes to measuring empathy, this bias is a significantly troubling one -- not just for autistic people, but for disabled people in general. The statements do not come from the perspective of autistic/disabled experience, they do not measure the respondent’s ability to read the nonverbal expression of autistic/disabled people, they do not consider the social position of autistic/disabled people in conventional social settings, and they do not consider any settings in which autistic/disabled people are the majority members.

To understand the implications of this bias, consider the first statement: “I can easily tell if someone else wants to enter a conversation.” As an autistic person, when I am in a “normal” social situation, I have great difficulty knowing when to jump into a conversation, and I am mystified by the fact that others seem to be reading one another’s signals and knowing when to let one another in. (In settings with autistic people, I do not have similar difficulties, as I understand both the cues and the social norms much better.) So, I would likely answer “Strongly disagree” to the first statement, simply because most situations in which I find myself involve “normal” people, who put out cues I do not understand; my answer, based solely on my minority status, would contribute to a lower empathy score. (I could skew the results by imagining myself only in situations with autistic people, but since the test is clearly measuring what happens in normative situations, I would respond to the statement based on the totality of my experience.)

Because the people writing the test are non-autistic, they have no idea of the methods that I use to work around the problem of being unable to read “normal” social cues. In instances in which I cannot intuitively tell when someone wants to enter a conversation, I tend to consciously look for people who aren’t able to get a word in edgewise, and I attempt to make room for them. In terms of perspective taking, this approach shows a significant level of cognitive empathy: I observe process, I see who is being excluded, and I identify with the experience of exclusion to such a degree that I attempt to ease the discomfort of other people. The fact that the authors of the test do not understand my adaptive mechanisms is quite problematic, because while my inability to tell when “normal” people want to enter a conversation would contribute to a low score, my adaptive mechanisms reflect a high level of cognitive empathy that the test does not pick up.

The statement about knowing when to include others in a conversation also fails to address the issue of what happens to autistic or otherwise disabled people in “normal” social settings. Given the social roles in which disabled people tend to be cast, this omission is a serious one. Disabled people often find ourselves wanting to enter a conversation in a social setting, only to have other people exclude us completely. I have been in a number of situations in which I’ve had this experience. “Normal” people were unable to read my nonverbal signals sufficiently to bring me in; in fact, they rendered me socially invisible. I always hesitate to talk in universals, but this experience is about as close to a universal one as you can find for disabled people, and anyone familiar with both the experience and the sociology of disability easily understands it.

I’m certain that if you asked most “normal” people whether they chronically fail to notice when disabled people want to enter a conversation, they’d deny it. For the most part, they pay so little attention to us that they probably don’t even realize what they’re doing. But these are the very same people who would very likely answer “Strongly agree” in response to the statement that they can easily tell if a person wants to enter a conversation. And the only reason that, according to the test, such a response is valid is because, in most instances, such people actually do notice other people sufficiently to read their signals. Thus, all the response indicates is that people in the majority are attentive to other people in the majority. It does not address a bias against disabled people, in the same setting, that is based on anything but empathy.

Finally, all of the statements that cover one’s ability to decipher the nonverbal cues of “normal” people rest on the assumption that everyone should be able to intuitively do so, and that an inability to do so is evidence of a lack of empathy. For example, the statement “I am quick to spot when someone in a group is feeling awkward or uncomfortable,” assumes that the respondent is looking at a non-autistic person. In this instance, I can certainly see how it might be difficult for an autistic person to quickly spot whether a non-autistic feels awkward or uncomfortable, because of difficulties in reading the person’s cues. I can also see how it might be easy for a non-autistic person to quickly spot whether another non-autistic person feels awkward or uncomfortable, because of an understanding of those same cues.

But of course, the test does not assume that the person being observed is autistic, that everyone should intuitively be able to read the nonverbal cues of the autistic person, and that an inability to do so is evidence of a lack of empathy. After all, if the statement about intuitively reading awkwardness or discomfort assumed that the respondent were looking at an autistic person, the results would come out quite differently, for two reasons: a) autistic people stand a better chance of reading one another’s signals properly, and b) non-autistic people usually find it very difficult to read autistic people’s signals properly.

For example, when I am in a store in which very loud music is playing, I have never had the experience of a non-autistic person being able to read my discomfort or note my awkwardness. Not once. Not ever. And yet, for me (and for a great many other autistic people), being in a store with very loud music is the hell-realm, and the question of whether to stay or go, whether to ask the store manager to turn down the music or not, whether to cry with frustration or put my fingers in my ears, places me in an extremely awkward position. My experience surpasses “normal” social awkwardness and “normal” social discomfort by several orders of magnitude, and yet non-autistic people fail to intuitively recognize that I’m having any kind of aversive experience at all. In every such situation I enter, I have to explain my experience, in detail, if I am to stand a chance of someone responding appropriately.

In general, when it comes to their relationships with autistic people, most non-autistics cannot, in the language of statement 52, “tune in to how someone else feels rapidly and intuitively.” And yet, of course, no one considers neurotypicality to be, by definition, a low-empathy condition.

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This essay was originally published at www.journeyswithautism.com.

The Attitude of Gratitude: A TPGA Xoom Giveaway

2011-11-25T00:30:00.000-08:00

UPDATE 11/27: Our Random.org-selected winner is Courtney W.! Congratulations, Courtney.

Thank you to everyone who participated, and we encourage you to read the more than 100 wonderful comments left below. -SR

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The good folks at Motorola sent me (Shannon) a Xoom tablet to give away. No hidden agenda, no stipulations -- they had simply heard how tablet computers can help people with autism, and they wanted to get two of their devices to people in the autism communities -- one to my son Leo, and one to a blog reader. A blog reader who could be you!

We TPGA editors had already planned to kick off the holiday season by seeding some positivity: putting up a gratitude post, and asking you readers to leave a comment about something that makes you feel happy or grateful -- and we still hope you will. But now, if you like, you can also make that comment an entry for our giveaway.

Our entire family has been playing around with our gifted Xoom, and we like it. It works well for Leo for many of the same reasons as his iPad -- size, intuitive touchscreen interface, and lots of apps, music, video, and other options. We also appreciate its Flash capabilities that allow Leo to view embedded YouTube videos, etc. And as you can see, it is easy to operate while holding not one but two stim objects.

Our boy was also delighted to see favorite apps like the Dr. Seuss OmBooks, I'm intrigued by the variety of apps available -- Android Market does not require developers to ask for formal approval before publishing. Here are two Android apps resources for Autism/AAC that I'm going to be perusing, and I'll keep looking for others (suggestions welcome):

AAC Apps for Android: appsforaac.net/content/aac-apps-android-0
iAutism's List of Apps for Android: www.iautism.info/en/2011/03/25/list-of-apps-for-android

If you'd like a chance to win your own Xoom, leave a comment on this page telling everyone about something that brings joy into your life, or fills you with gratitude. Good luck!

Participants must abide by our Giveaway rules. Additional stipulations:

Your shipping address must be in the U.S., Canada, or Mexico.
Only one comment per person will be counted, though you can certainly leave as many gratitude comments as you wish!
Only comments on this website page will be counted -- not those from Facebook or Twitter.
The eligibility period will be over at 11:59 PM Pacific Time on Saturday, November 26, 2011. Comments left after that time will not be counted.
Only one winner will be selected, and will be announced on this site on Sunday, November 27th.

On "Quiet Hands"

2011-11-23T03:00:00.000-08:00

Julia Bascom
juststimming.wordpress.com

Explaining my reaction to this:

means I need to explain my history with this:

1.

When I was a little girl, they held my hands down in tacky glue while I cried.

2.

I’m a lot bigger than them now. Walking down a hall to a meeting, my hand flies out to feel the texture on the wall as I pass by.

“Quiet hands,” I whisper.

My hand falls to my side.

3.

When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed.

4.

In a classroom of language-impaired kids, the most common phrase is a metaphor.

“Quiet hands!”

A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at a pencil, rubs their palms through their hair. It’s silent, until:

“Quiet hands!”

I’ve yet to meet a student who didn’t instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.

The literal meaning of the words is irrelevant when you’re being abused.

5.

When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.

6.

Hands are by definition quiet, they can’t talk, and neither can half of these students...

(Behavior is communication.)

(Not being able to talk is not the same as not having anything to say.)

Things, slowly, start to make a lot more sense.

7.

Roger needs a modified chair to help him sit. It came to the classroom fully equipped with straps to tie his hands down.
We threw the straps away. His old school district used them.

He was seven.

8.

Terra can read my flapping better than my face. “You’ve got one for everything,” she says, and I wish everyone could look at my hands and see I need you to slow down or this is the best thing ever or can I please touch or I am so hungry I think my brain is trying to eat itself.
But if they see my hands, I’m not safe.

“They watch your hands,” my sister says, “and you might as well be flipping them off when all you’re saying is this menu feels nice.”

9.

When we were in high school, my occasional, accidental flap gave my other autistic friend panic attacks.

10.

I’ve been told I have a manual fixation. My hands are one of the few places on my body that I usually recognize as my own, can feel, and can occasionally control. I am fascinated by them. I could study them for hours. They’re beautiful in a way that makes me understand what beautiful means.

My hands know things the rest of me doesn’t. They type words, sentences, stories, worlds that I didn’t know I thought. They remember passwords and sequences I don’t even remember needing. They tell me what I think, what I know, what I remember. They don’t even always need a keyboard for that.

My hands are an automatic feedback loop, touching and feeling simultaneously. I think I understand the whole world when I rub my fingertips together.

When I’m brought to a new place, my fingers tap out the walls and tables and chairs and counters. They skim over the paper and make me laugh, they press against each other and remind me that I am real, they drum and produce sound to remind me of cause-and-effect. My fingers map out a world and then they make it real.

My hands are more me than I am.

11.

But I’m to have quiet hands.

12.

I know. I know.

Someone who doesn’t talk doesn’t need to be listened to.

I know.

Behavior isn’t communication. It’s something to be controlled.

I know.

Flapping your hands doesn’t do anything for you, so it does nothing for me.

I know.

I can control it.

I know.
If I could just suppress it, you wouldn’t have to do this.

I know.

They actually teach, in applied behavioral analysis, in special education teacher training, that the most important, the most basic, the most foundational thing is behavioral control. A kid’s education can’t begin until they’re “table ready.”

I know.

I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.

I know.

I need to have quiet hands.

I know. I know.

13.

There’s a boy in the supermarket, rocking back on his heels and flapping excitedly at a display. His mom hisses “quiet hands!” and looks around, embarrassed.

I catch his eye, and I can’t do it for myself, but my hands flutter at my sides when he’s looking.

(Flapping is the new terrorist-fist-bump.)

14.

Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you...

if you...

if you...

15.

Then I...

I...

.

Excuse Me --That's My Son You're Talking About

2011-11-21T03:00:00.000-08:00

Chris R.
autismspoke.blogspot.com

I can see it very clearly. I'm pushing a shopping cart through a store. In the cart rides Matthew, my four year old son with autism. He's making the sounds he makes...

Sometimes when he's happy, the sounds he makes are loud. You might say they are screams, but happy screams. When he is happy and loud, we do what we can to keep him somewhere below an F-16 on full afterburner. It's not that I'm worried he'll ruin ten seconds of someone's shopping trip ... it's that I worry what I'll do if someone says anything cross, or gives me a look that can't be taken in any other way.

You see, I'm always in full-blown autism dad alert mode ... just waiting for some parent with "perfect" kids to trip on the wire and have the autism awareness grenade that is me explode and rip them into tiny, self-righteous bits right in the middle of Target.

Which brings me to our trip to the grocery store that evening.

Same scenario as before. Matthew is in the cart. I'm pushing. My wife and daughter have the list and are leading the way.

Matthew lets out a couple of loud happy sounds -- approaching F-16 volume -- as we peruse the outer regions of the produce section. No biggie. There are a lot of people there and everyone is focused on getting in and getting out.

I decide we need bananas. The banana area is crowded, so I leave the cart -- and Matthew -- with my wife and head in.

Just as I reached the bananas, I heard Matthew's happy squeal again.

And wouldn't you know it ... someone tripped on the wire.

I heard: "Christ there goes that kid, screaming again."

This comment was made by a fortyish male grocery store worker, to his coworker, who stood about ten feet away (so it was said loud enough for everyone around him to hear).

I was behind him, so I saw his coworker roll his eyes and nod his head in agreement.

I calmly bagged my bananas and turned to face the guy.

"Excuse me ... the little boy you're complaining about? That's my son. He has autism. He's four and doesn't speak. He gets excited and screams sometimes. He's not throwing a fit ... it's just what he does."

He had the look of someone who just got caught talking small smack about someone else's kid.

He threw in a few "I'm sorry"s and a "He's not as loud as some of the kids in here" as I spoke.

I ended up giving a very nutshell explanation of autism to the guy.

I wasn't angry with him. He was quick to apologize and listened to what I had to say. I patted him on the shoulder as I walked away and said "I hear it all the time." Looking back, I hope he took that as, "I hear my son's happy squeals all the time" and not "I hear people complain about my son all the time." I may clarify if I ever see him again.

I might have been that guy in my former life. Hell, I know I've been that guy. Maybe I wasn't so open with my complaints, but I'd get annoyed when I saw or heard a kid going bonkers in public.

Not anymore. I give the courtesy to others, and I sometimes foolishly expect to receive it.

This was a minor thing, and I reacted accordingly I believe.

So that's that. The trip wire isn't as sensitive as I thought it was...

But it will always be there, waiting for the next person to step on it. How hard they step determines how hard the grenade explodes.

a version of this post was previously published at autismspoke.blogspot.com

Early Ignorance

2011-11-18T03:00:00.000-08:00

Karen Velez
solodialogue.wordpress.com

My son was diagnosed with autism in April of 2010. He was almost four years old when we received this news. It was not the shocking blow that I’ve heard other parents describe. For me, that blow came at Christmas 2009.

To me, my son was always a “sensitive” child. I never baby sat and, literally, had no experience with children. I knew no one with autism. I knew no one with children with autism. I was, truly, the epitome of autism ignorance.

For the first three (nearly four) years of my son’s life, I had rearranged my own. Previously a trial lawyer working 45-60 hours a week, I cut back my hours to 9-12 hours a week. I thought this was “normal” for new mothers.

My son was obsessed with space. I bought every book on the planets. I ritualistically pointed to Mercury, Venus, Earth…. at my son’s urging so he could recite them. I cringed when newer books left out Pluto because it was part of our “routine.” That was how we “played.”

Around my son, I learned not to say certain words or sounds to avoid a very nasty reaction. This was okay with me: I reasoned that at least he was communicating his dislikes. Some of the things my son rejected: hearing me make the sounds of animals, horns, or sirens; counting numbers also set him off. Pretend play was non-existent. My son had other quirks: he required me to keep both lights in our bedroom, either “on” together or “off” together. We took escalators up and down and up and down. We rode elevators four to six times in a row, while I apologized to those who got in my son’s way when he insisted on pushing the buttons. All the while, I never thought these behaviors were indicative of something. Something big, something important.

My son spoke, but not in sentences. He repeated lines from TV. I counted how many words were in his vocabulary, as requested by my pediatrician. It was within the low end range. I introduced new words. I fudged the numbers to fall within “normal.” I was fooling myself. Clueless.

About two weeks before Christmas 2009, my son had an ear infection. We went to the doctor. Oftentimes, our regular pediatrician would not be available. We saw many different doctors. It was never pleasant. There were always tears and loud crying. But this was not Disneyland. This was the doctor’s office. That was normal?

On this occasion, my son was particularly fussy. As usual, I intervened. “Oh, Dr. B, please don’t use the word ‘moo,’ or he will get upset,” I said, while she tried to scope his ear. Too late. He was upset. He started to spell.

One of the paths to a “meltdown” for us was always to spell. “T-R-U-C-K!!” His inflection and volume would rise. He was spelling by the time he was two. Now, here in Dr. B’s office, spelling escalated to crying, screaming, and a full-fledged meltdown.

That’s when Dr. B sat me down and suggested an evaluation. She did it as gently and kindly as she could. She told me that UC Davis Mind Institute, nearby, was one of the best facilities in the country. She would make a recommendation. She kept using the words “quirky behavior.” She tried to soothe me. She told me that his autism was “mild” and “borderline.” She told me about other children with autism and how they were in “regular schools.”

But by this time, my head was reeling. I was panicked. I only half heard her words. Something was “wrong” with my precious, beautiful baby boy? My joy, my life. How dare she suggest my son might not attend “regular” school?! And, profoundly, to the forefront, the question, what is autism?

At the time, I had heard that children could “get autism” from vaccinations. I heard that Jenny McCarthy had “cured” her son of autism by some diet. I knew nothing. I had absorbed only bits of myths. I was mad! At Dr. B, at my husband for not being there when I was given this news, mad at the world. The reality was I was mad at my ignorance.

After Christmas, I filled out paperwork for an evaluation with UC Davis. I mailed it in. Every day, I was researching, looking for treatments and answers. I found private speech therapy for autistic children nearby. I obtained referrals. First, a hearing evaluation. Then speech therapy.

Looking back now, if I’d only understood what autism was from the very beginning, maybe I could have started intervention earlier. I wish I had not been so profoundly ignorant. I wish I had known more. I still have so much to learn, to accept, and to understand.

Now, my son has therapy five days a week. He has made significant progress. Meltdowns are few and far between and almost (knock on wood) a distant memory. He is phenomenally smart but we have our daily struggles. I am grateful that I was blessed with all the right pieces falling into place.

A lot of parents who blog and tweet make a point of telling the world that autism does not have their child -- their child has autism. It’s almost as if, in using the word autism, in defining our children, we envelope them with a blanket of fog to others. Instead of recognizing our children as individuals, our kids are cast into a stereotypical bin and avoided by those too ignorant to understand.

The word “autism,” in my limited experience, remains a mystery to the general public. Unless your life has been affected, you simply don’t know. There is nothing to motivate a person to know.

That’s where each of us who do know come in. Each of our voices is a weapon against ignorance. As parents, with each blog, each story, we announce to the world that our children are diverse, varied, multifaceted, individuals with interests, talents, and personalities just like any person.

I want everyone to know, to understand, to recognize. Because, ironically, it is the power of communication -- the very power that so many naive about autism assume autistics don’t have -- that can, and will, save autistics in the end. Save them from prejudice, bullying, discrimination and isolation. Knowledge is power and communication is the key.

A version of this essay was previously published at www.solodialogue.wordpress.com/

Finding Not Even WrongLand

2011-11-16T03:00:00.000-08:00

Jean Winegardner
www.stimeyland.com

Photo courtesy of the author

I am always apprehensive about parent-teacher conferences.

Nothing bad ever happens. Sam has never gotten anything but glowing reviews. Quinn is Quinn, which is wonderful and charming. And Jack? Well, I always hear that he is very smart, that he is "making sufficient progress to meet goal(s)." In fact, I never really hear anything that surprises me, but I still feel angst walking in to those meetings -- at least to Jack's.

Today was different. I've noticed Jack struggling more and more this year. I've started to wonder if an inclusion classroom is the best setting for him. (That's a whole other set of angsty feelings.) I've started to see his autism-specific deficits bumping up against the curriculum.

But here's the thing. Jack's teacher sees this, recognizes it for what it is, and gave him the appropriate marks to reflect it. She gets it. She very explicitly knows that giving him high marks just because he is smart doesn't help him. She doesn't just want to teach him. She wants to help him.

Third grade is where it starts getting harder for him to slide by just because he's bright, she told me. I agree. As someone who was smart enough to be an epic bullshitter and get good grades all through school without actually learning anything, I appreciate her seeing that and stating it. (I personally think that I started actually hearing and retaining knowledge for the first time in grad school. Seriously. But I could write an essay like nobody's business. Kinda like now, actually.)

Here's where she blew my mind though: She showed me some examples of his work and took the time to go through his answers and tell me how she and he got to them. She showed me one worksheet about seeds and said, "I didn't know how to grade this. It's not even wrong, but it's not right."

Those of you who have read Paul Collins' excellent book about autism, Not Even Wrong, might have just taken the same sharp intake of breath that I did when she said that in the conference. (If you haven't read it, check out my review of the book from last year at Autism Unexpected. Then go read the book.)

That phrase refers to what was originally a derogatory way of dismissing someone's answer to a problem. It's not right, it's not wrong, but the solver's frame of reference is so far off base that it is not even wrong. It perfectly describes autism and it perfectly describes Jack.

It also perfectly encapsulates what I want for my kid -- a place, an existence, where it is okay for him to be not even wrong. Because I love the way Jack's brain works. I love the way autism has given him this unique perspective that lets him come up with some of the most amazing things. I adore his not even wrongness. I want him to find a way of life where starting from a fundamentally different point of view is an asset to him and where he can be valued for that.

I walked out of the conference feeling buoyed. I'm not sure by what. Was it hope? I don't think so. I know we have a lot of hard work ahead of us to find Not Even WrongLand. Was it delight that he has a teacher who gets him? Partly, but we've had that before too. Jack has always had amazing teachers. Was it a sense that this teacher wants to help Jack get to where he needs to be? Definitely, but that's not totally it.

I think what I felt was a shift in thinking today. Largely mine. Ever since the Dialogues over at Thinking Person Guide's to Autism, I have been feeling that shift. I've always been a neurodiversity advocate, but sometimes I run across something that kicks that into high gear. Hearing Jonathan Mooney speak for the first time was one of those. The Dialogues was another. Hearing those words come out of Jack's teacher's mouth (quite by happenstance; she wasn't, as far as I know, aware of the implications of the phrase) is the latest.

Let me offer you this quote from Collins' book: "Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg."

This is where I see my place in the autism community. I'm not running for office. I'm not pushing legislation. I don't fundraise for causes. I'm not forming organizations and I'm not fighting legal battles. All those things are necessary and important, but that's not what *I* do. I talk. I talk and I write and I try to win people over with honey and words.

I'm trying to help find more square holes and I am trying to get to the round holes and make them at least trapezoidal before my kids and your kids get hammered into them. I want to spread awareness of both autistic kids and autistic adults. I want this to be a world where it is okay to be a square peg without having to pretend to be round.

I don't want to change Jack. I want to change the world.

A few weeks ago, I started trying to change the world by changing Jack's class. I went in, armed with nine pages of notes, borrowed liberally from MOM-NOS' toasters and hair dryers series, and I told Jack's classmates about autism.

I told them how each one of them is different and how they can be a friend to Jack and other kids with autism. I told them to go forth and be different themselves, and to show other kids that is okay to be different and that even if he doesn't always show it, that they are important to Jack and they can make a difference. I listened to them at the end of my talk when they told me, "There is a kid on my soccer team with autism," and "I have an uncle who doesn't talk," and I knew that some of them were getting it.

Not all of those kids are going to make it. They will not all stand up for the different kids and adults that they run across in their lives. But some of them will. And some of them, even if they don't act on it now, just might remember about the toasters and the hair dryers later in life when they come across someone who acts differently. And they might help that square peg find a hole that isn't round.

The kids sent me letters the day after my presentation, letters that said things like "Thank you so much for coming and teaching us how to be friends with Jack and telling us what games Jack likes to play. I already started to try to be friends with him."

Today, at my conference, Jack's teacher told me the story of a short passage that Jack had to write, which would get a grade of 0 to 3 points. His original sentence garnered him a zero. So the teacher pushed him, and Jack changed it, reading it to the whole class. The change gave him a one. Then he added to it some more and read it to the whole class, and then he got a two. Pushed by his own outrage at the injustice of the Not Three score and the urgings of the teacher, Jack continued, finally reading his final three-worthy passage to the whole class.

I wasn't there, so I don't know how it really all went down, but this teacher has created an environment where Jack was comfortable going through this whole process in front of his peers. And the class understood. They knew where he was coming from and how hard he was working.

The teacher has a Hall of Fame wall where passages that are really, really good and earn threes get hung up. Jack's passage was undoubtedly not up to what was already posted there. But you know what Jack did? He went and got some tape and he put his paper, on which he'd crossed out "0" and written "3," up there all by himself. He knew that he had worked hard and that, for him, his work was Hall of Fame worthy. And the teacher made a square hole for him and let it stay.

The world is slow to change. We have been hammering square pegs into round holes for so long that it takes a huge leap to put down the hammers. I'm hopeful that I got to some of those kids before they even pick up the hammers. And I hope that some of those kids told their parents. And I hope that some of you read this and tell your kids. And I hope that we, all of us together, CAN change the world.

I guess what I felt today at Jack's conference is that his teacher is finding a way for him to be a square peg and to make it okay. She is in no way an expert on teaching autistic kids. I don't know if she knows much about autism at all. But she seems to intuitively get the need for square holes, and that? That is everything I can hope for.

Interview: Christa Dahlstrom of Flummox and Friends

2011-11-14T03:00:00.000-08:00

Flummox and Friends creator Christa Dahlstrom recently sent out the following tweet:

"People of Twitter: I am engaged in the making of a TELEVISION PROGRAMME for NERD YOUTH and I REQUIRE YOUR ASSISTANCE."

We recommend you heed her rallying cry and hop over to the Flummox and Friends Kickstarter page -- Christa and her crew are poised to deliver a smart, sassy, infinitely engaging and very necessary show for kids who are, well, flummoxed by social dynamics. We talked to Christa last week about why Flummox and Friends needs to happen and how it will change the world when it does.

Tell us what Flummox and Friends will be like.

The show is a live-action comedy, along the lines of a contemporary television comedy rather than an instructional video or typical kids' educational show.

The main focus of the show is Professor Gideon T. Flummox of Flummox Labs and his two lab assistants, Milo and Wanda. The three of them are quirky in different ways that viewers will both recognize and hopefully identify with. The trio work together inventing all sorts of devices and contraptions. Some of these inventions are designed to help them overcome the social challenges they encounter when interacting with their friends -- like Suzie Swizzler, a bubbly and talkative chef, and Dex Brickerson, a suave and charming pilot. When the inventions fall short (or comically malfunction) they come up with new ways that they -- and the viewers -- can deal with the challenge.

The characters on Flummox and Friends don't change who they are, or lose their quirkiness, when they learn a new way of coping with a social challenge. We want to try to show the world through their eyes -- that these situations are weird and hard -- and not make them into characters who need to be fixed or changed.

In between the Flummox Labs scenes, there will be short musical and animated segments designed to support the theme of the episode.

We think of it as a little bit Pee Wee's Playhouse, mixed with The Big Bang Theory, with a little old-school Electric Company thrown in.

What inspired you to create the show?

For me, so much of this was inspired by my experience as a parent. My son, who has Asperger's, gravitates towards humor and story as a way of expressing himself, connecting to others and learning. Any time he's engaged in something that makes him laugh, he's more open and more available to take in information. While people on the spectrum might not have the social wiring that comes built-in in a neurotypical brain, they often are incredibly sophisticated when it comes to humor and language and aesthetics.

Unfortunately, many of the products designed to teach social skills seem to ignore how sophisticated and smart our kids are. So for example, you've got a kid who enjoys the rapid fire dialogue of, say Phineas and Ferb, or can point out the differences between the original Star Wars and the 2011 reissue, and you give that kid a worksheet that says, "When I see my friend I say 'Hello. How are you?'" well, it's going to fall kind of flat. And I would even say that it's not very respectful of the kid's intellect.

So, I found myself wishing that someone would embed ideas about social and emotional skills into the types of programs my son and other kids like him really enjoyed watching: the ones of that are fast-paced and captivate and challenge his intellect and sense of humor. And eventually, sort of to my surprise frankly, I found myself developing it and writing it myself.

Who is your target audience?

We see the show appealing to a couple different groups.

One is families who have bright and verbal kids that are struggling with social interaction. These kids will have either been diagnosed with a specific condition, or might be those kids -- and we think there are a lot of these -- who are struggling but don't have a formal diagnosis. These are the kids that we think are really falling through the cracks because without that diagnosis, they usually don't have the pathways to support that are available to those formally diagnosed.

Another is educators and therapists. We think that teachers and therapists who are already teaching social skills will want to integrate episodes or portions of episodes into their existing curriculum. But we also hope that general educators will embrace the show, since we think that many teachers in regular ed classrooms see the need for something that helps them work on social and emotional development with all kids.

One note: this isn't specifically a show "about" autism. It's a show about friendship, and relationships and how relating to people is hard work, especially when friends have very different styles that can sometimes create misunderstanding and annoyance. And it's about how those relationships -- even through they're hard work -- are totally worth it, totally worth learning a few strategies for coping with the troubles. And in that way, we're hoping that Flummox and Friends will appeal to people both inside and outside the special needs community.

Will it appeal to parents as well as to kids, like Bugs Bunny or Pee Wee's Playhouse?

It's critically important to us that families want to watch this together and that adults enjoy the show, not just tolerate it. We see one of the main goals of Flummox and Friends is to function as a springboard for conversations about social and emotional challenges -- conversations that don't feel punitive or judgmental, but that emphasize how normal it is to feel "flummoxed" by our weird and arbitrary-feeling system of unspoken rules. We think adults will relate to the characters and their dilemmas as they think about situations with friends or in the workplace.

How did you decide on the name "Flummox," and why?

"Flummox" captures the idea of being baffled by something that's inherently confusing -- rather than being "wrong" or not smart enough. Plus, it's super fun to say and has an "x" on the end!

Who helped create the show? Is it curriculum-based? Do you anticipate having parent/educator guides available?

I'm fortunate to be working with Jordan Sadler and Liesl Wenzke Hartmann, who are incredibly talented and insightful communication therapists. I first approached them when all I had was a detailed treatment of the show. I was hoping they could validate that it was a legitimate idea, that I was on the right track. I was thrilled when they loved the idea enough to want to work on it with me and make it a reality. They've developed the curriculum that will serve as the foundation for Flummox and Friends as an entire series. It's called Tune in, Connect, Have fun! which really beautifully sums up the steps of social development and the positive outcomes of social competence in a lovely way.

Jordan and Liesl based the curriculum on the most up-to-date research on developmentally-based approaches for looking at social skills, and they also drew on their own experiences as practitioners working with kids who have different kinds of social and emotional challenges. I think one of the things that really sets them apart is their play-based approach for working with children. They really believe that humor and joy and delight are foundational for learning to interact and form relationships and the show really reflects that point of view.

They're also working on a whole host of associated materials for educators and families that extend the content into the child's environment and support the learning goals.

When you reach your donation ceiling, what will the next steps be?

We'll go into pre-production mode, then shoot principal photography for a pilot episode. We've lined up a fantastic cast and most of our crew, but there's still a lot of work to do to get ready to shoot. Once we have a pilot episode completed, we'll try to get it seen by as many people as possible in hopes of finding a production partner who can help us turn this into a an entire series of episodes.

Is your goal broadcast or webcast TV -- and does it matter?

Right now, I'm not sure it matters so much. The ways that viewers consume television is changing and evolving so rapidly -- Netflix Instant is just a couple years old, YouTube just announced they're launching more than 100 channels with original content -- I'm really open to new possibilities for how to get our show out there beyond just trying to sell it to established players like PBS or Nickelodeon, which is kind of a long shot anyway. I think being open and opportunistic is in our favor now. Regardless of the distribution channel, we would want to be able to sell DVDs since that is still a big way families watch stuff and certainly important for the education market.

Of course, first we have to make an awesome pilot that people will love and want to watch! But, I think there's never been a better time to get an idea out to an audience directly without going to ask permission from the typical industry and institutional "gatekeepers." Rather than try to circulate a script or pitch an idea to someone else, we thought we'd be more successful by just going to the passionate community of parents and educators who we suspected were like us -- looking for a show like this.

Want to make Flummox and Friends a reality? Please visit the Kickstarter campaign before December 9th, donate whatever amount you can, then share the project links with everyone you've ever met!

Which Students Need Social Learning Groups?

2011-11-11T03:00:00.000-08:00

Diane Levinthal
www.SocialStrides.com

Unless a child is diagnosed with a learning disability that is known to affect social interaction, issues can take parents by surprise. All of a sudden, we notice that the same children who played alongside peers in daycare are now alone at recess during the early elementary school years. They want friends and try to interact with peers but without success.

At this age children engage in cooperative play and interactions are based on peer choice, not just who happens to be in the class or in a playgroup mom selects. Now they must be able to read the subtleties of verbal and nonverbal language and tell the difference between literal and non-literal language across people (authority figures, peers, family, acquaintances, friends) and settings (school, community, home). We take this ability for granted, but it is an awesome leap in development. We expect them to absorb the nuances of social interaction just like the rest of their peer group. Why isn’t that happening for them?

In some instances, these are students with learning challenges in language, self-regulation or flexibility in thinking. In all instances, these are students who cannot learn to interact well simply through experience and exposure. It is not enough to let them join in with other children and hope that they will make friends. Because they are not able to read social cues well, they will not learn that way. Every day social settings are good places to practice newly acquired social thinking and related social skills, but they are not good places to learn them. Real world interactions move too quickly and are too complex for children with social differences. They also leave too much room for others to misunderstand them. For example, if a child is overly blunt he may hurt others’ feelings unintentionally and land into trouble at school. Or he may take friendly teasing literally and overreact in ways that prevent friendships from developing. These students need to be taught social thinking and skills in direct, concrete ways, and be allowed to practice those new skills while receiving feedback on how they are doing. They must use cognitive skills to learn what others learn automatically.

Some programs teach social skills that can be used in rote fashion in predictable situations. Examples include hand-raising in class, saying excuse me, or use of eye contact. But the social world is more complex than that. For example, eye contact is much more than simply looking into someone’s eyes. In addition to reading emotions, we track eye gaze to see what people are thinking about or what their intentions are and this helps us guide our own behavior. We use it to read the direction in which people are moving and this helps us to avoid collisions in hallways. We use it to note a listener’s eyes looking down and away from us, suggesting that they are not interested in our subject. We can also track eye gaze to determine whether teasing is friendly or not based on whom the teaser looks at immediately after delivering the joke.

Children with social difficulties require more than social skills instruction. They need to be taught to think socially. They need instruction that addresses social thinking, non-verbal language, inferring intentions and social problem solving so that they learn not only the “what, where, who, when and how” but most especially “the why” behind social interaction.

If you think your child is having trouble socially, get help. Social challenges do not go away on their own, and as our kids grow up, the social world gets more complicated and nuanced. In my experience, every individual wants to relate to others. With appropriate help, every student can make the social strides needed to develop friendships.