Kerima Çevik
theautismwars.blogspot.com
Several years ago, I attended a meeting of parents and care providers to discuss the lack of county services available for their loved ones on the autism spectrum. At the meeting, an African American medical professional told me something that still gives me pause: "Autism is a disability for the rich," she said. “Only the wealthy can afford the costs of the intensive early interventions we as parents need to help our children succeed." She continued, “As African Americans, we are disproportionately caring for our children on the spectrum as single parents, with limited means, and are dependent on institutions like our public schools to give whatever supports they can."
As I continue my three year fight for appropriate supports for my own child, I ask myself each day, “Was my acquaintance correct? No matter how diligently I try, no matter the effort I make, will I be unable to provide my own child with the help he needs because of financial and racial limitations?”
Two stories show this disparity of care, resources, and options in a way that leaves me with heartbreaking concern. A Journey into the World of Autism is a series of photographs with commentary, about an against all odds, full on battle for the dignity and civil rights of a 14 year old African American boy, Daniel Tuttle Jr. Daniel was given a diagnosis of autism when he was 2 years old. He never received early interventions or any support services. His battle for services is still being fought by a woman who is not his mother. She was his first daycare provider as an infant; when she heard Daniel's mother was out of work and overwhelmed trying to manage his care, she did not hesitate to go through the process of becoming his care provider.
Autism Lives Daily in Our House briefly outlines the story of Jack Drinkwine, a white child diagnosed with autism who is receiving intensive interventions and supports. He has teams of medical and educational professionals working with him to improve his ability to navigate his world. Jack's mother, a university professor, discusses the combination of therapies and supports paid for by a combination of funding that Daniel Tuttle's care provider could never hope to achieve.
Daniels is homeschooled and sent to a speech therapist. Daniel's only other therapy, administered by his care provider, is a GFCF diet and the basic set of the shoebox task system, the foundational exercises in the TEACCH method. Daniel's care provider continues to try to place him in a safe educational environment where he is able to adapt to the classroom and receive at least minimal services and supports. Meanwhile, Professor Drinkwine advises other parents to acquire the intensive interventions for their children that she has, never considering that many parents and care providers do not have the resources available to them that a family with two working parents -- a university professor and a high ranking military officer -- does.
Is this disparity of service placing African American children on the spectrum at risk for more confrontations with aversive behavioral management techniques, fewer educational and therapeutic supports and a greater risk for either institutional care or catastrophic encounters with the criminal justice system as adults? It is a chilling thought for me as I look at my dark skin and my deeply autistic son.
Please read both articles and let me know what you think:
More on Daniel Tuttle Jr. from DC & NYC Photographer Eli Meir Kaplan: Against the Odds
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This article was previously published at theautismwars.blogspot.com
Friday, February 24, 2012
Wednesday, February 22, 2012
The Morality Police: Honor Codes and the Tattle-Tale Aspie
Amy M. Murphy
www.aspergersthealien.blogspot.com
I'm not going to beat around the bush -- Aspies love to tattle and point fingers at evildoers. Driving with an Aspie one can be sure if the stated speed limit is exceeded there will be words.
Both my son and I consider ourselves to have a code of honor which is probably higher than most. We believe in rules, laws and a certain high standard of everyday conduct. He has remarked, more than once, that his aberrant behavior of a year and a half ago was more damaging to his psyche and personal pride as he broke his own moral code, than the whole jail/ prison sentence thingy.
We like to attempt to hold others to our over-zealous standards. I made an excellent safety in grade school. I loved "patrolling" and reporting the tiniest malfeasance. If anyone was cheating on a test, the teacher could count on me to report this.
Looking back to my teens and early twenties, my own tattling behavior was was completely out-of-control, overboard, and highly unnecessary. Grade-school tattling is pretty much accepted, based on age and level of maturity, but when you hit twenty, it's time to sit down and have a very long talk with yourself. I am not the world's morality police. My moral standards can be as high as I want, but I am no judge or jury. Yes, if I see an innocent being harmed, I will do something about it and report it, but overall, I definitely have an overly-zealous streak that needs containing.
I have learned what are little infractions and what are big ones ... who am I kidding? ... somewhat. I try and let the little things go and allow the driver of the car to decide her fate. As well as understanding it is up to the teacher to ensure no cheating is done, not I.
I must say that I endured quite a bit of ridicule, rightly so, at more than one place of employment for my petty-infraction reporting. Tattletales are not held in high esteem and this whole wanting to get everyone to do the right thing, at my intense level, is nothing but detrimental and should be analyzed, dealt with, talked about, and abolished.
When Eldest was in school, he was also so thrilled to share his "report" on evildoers at least once a week. Now that he is 19, I sincerely hope he has gotten over that.
If I have questions, or am stymied as to if such-and-such is a serious, reportable action, I have learned to ask at least one other trusted friend for their opinion. That seems to work for me these days.
Why do we with Asperger's feel so very compelled to tattle? Because it screws up our sense of order and balance. Rules are to be taken seriously and protocol should be followed to the letter. One lawless individual causes us chaos. One person who gets away with something means all people can do as they please. Maybe, amongst this issue alone, we would dearly love all to adhere to our principles because it makes the outside world a safer, more predictable place. Really, we just want safety and security.
Aspie kids ... yeah, they really can't help it, but definitely address the issue.
And for goodness sake, drive the speed limit, use your turn signal at fifty feet and make complete stops at stop signs! Geez.
This essay was previously published at www.aspergersthealien.blogspot.com
www.aspergersthealien.blogspot.com
 |
| By Beijing Patrol from US via Wikimedia Commons |
Both my son and I consider ourselves to have a code of honor which is probably higher than most. We believe in rules, laws and a certain high standard of everyday conduct. He has remarked, more than once, that his aberrant behavior of a year and a half ago was more damaging to his psyche and personal pride as he broke his own moral code, than the whole jail/ prison sentence thingy.
We like to attempt to hold others to our over-zealous standards. I made an excellent safety in grade school. I loved "patrolling" and reporting the tiniest malfeasance. If anyone was cheating on a test, the teacher could count on me to report this.
Looking back to my teens and early twenties, my own tattling behavior was was completely out-of-control, overboard, and highly unnecessary. Grade-school tattling is pretty much accepted, based on age and level of maturity, but when you hit twenty, it's time to sit down and have a very long talk with yourself. I am not the world's morality police. My moral standards can be as high as I want, but I am no judge or jury. Yes, if I see an innocent being harmed, I will do something about it and report it, but overall, I definitely have an overly-zealous streak that needs containing.
I have learned what are little infractions and what are big ones ... who am I kidding? ... somewhat. I try and let the little things go and allow the driver of the car to decide her fate. As well as understanding it is up to the teacher to ensure no cheating is done, not I.
I must say that I endured quite a bit of ridicule, rightly so, at more than one place of employment for my petty-infraction reporting. Tattletales are not held in high esteem and this whole wanting to get everyone to do the right thing, at my intense level, is nothing but detrimental and should be analyzed, dealt with, talked about, and abolished.
When Eldest was in school, he was also so thrilled to share his "report" on evildoers at least once a week. Now that he is 19, I sincerely hope he has gotten over that.
If I have questions, or am stymied as to if such-and-such is a serious, reportable action, I have learned to ask at least one other trusted friend for their opinion. That seems to work for me these days.
Why do we with Asperger's feel so very compelled to tattle? Because it screws up our sense of order and balance. Rules are to be taken seriously and protocol should be followed to the letter. One lawless individual causes us chaos. One person who gets away with something means all people can do as they please. Maybe, amongst this issue alone, we would dearly love all to adhere to our principles because it makes the outside world a safer, more predictable place. Really, we just want safety and security.
Aspie kids ... yeah, they really can't help it, but definitely address the issue.
And for goodness sake, drive the speed limit, use your turn signal at fifty feet and make complete stops at stop signs! Geez.
This essay was previously published at www.aspergersthealien.blogspot.com
Monday, February 20, 2012
Separate Vacations
Shannon Des Roches Rosa
www.squidalicious.com
www.thinkingautismguide.com
When we told people we were spending a week on a summer family vacation with our girls -- but without our son Leo, who has high-octane autism, responses varied. The best reactions stayed positive without dwelling on the details of our abandonment: "Wow, that sounds like fun, all that time in the San Juan Islands!" More well-intentioned reactions stoked my already-raging guilt-fires: "Well, you know, those girls really deserve a break, and so do you -- it's about time you had a regular family vacation."
I know those latter folks meant well, but it's amusing to me that, because of his autism, sweet-natured Leo is assumed to be the kid we need a vacation from -- when in truth it's his fiery, defiant, bickering sisters who are currently draining the parenting lifeblood from my veins.
Still, I felt guilty leaving Leo behind. I kept telling myself we weren't excluding him -- he went to his beloved camp that week, so it didn't matter to him whether we stayed home or circumnavigated the globe. But we also were spending a week on his grandparents' boat. Which he loves. Loves loves loves. That seemed sneaky and uncool.
Here's where the guilt-flames turn to bonfires -- we planned a completely different vacation without Leo along. Instead of spending two nights on the boat as we did with him last year, we stayed afloat nearly a week. Instead of sticking to the waters near the home port in Lake Washington, we sailed through Seattle's locks, into Puget Sound, and all the way to Orcas Island.
It was glorious. My in-laws are spectacular hosts, we were on a damn boat, y'all, and the girls managed to mostly rein in their cage match tendencies. I also told myself we were scoping the area, to see if it would be reasonable to bring Leo to the Islands next year. Still, it was not always easy to surrender to the bliss of the San Juans' straits, vistas, pottery studios, and orca sightings while aware that our family was minus one. (Though my in-laws' generosity in sharing their lovely wines helped.)
I know Leo was fine, too. Better than fine -- the camp had Jennyalice on tap should Leo need a local to help him out or come get him, plus when I came back from Seattle to pick him up, he was having so much fun that he made a stink about coming home. And I really don't think he would have enjoyed our version of a boat trip -- he's not ready for an nautical excursion of that length, plus quarters on boats are tight; they're not ideal places to soothe a homesick autistic boy out of a decibel-heavy meltdown. But taking our family to Orcas and staying on the islands themselves? Now that I've seen them, I think that might work for Leo.
So we enjoyed our surreally wonderful boat trip, while I tried not to talk about how guilty I felt for leaving Leo in the Bay Area, or how worried I was about all the things that could possibly happen in our absence. We lounged at restaurants whose menus our selective eater Leo might not appreciate. Seymour and the girls took long, languid kayak trips to places where our little fish Leo might have been tempted to jump overboard. We lingered at Friday Harbor's Whale Museum, which would not have impressed Leo at all. We had a great time, enjoying our vacation for what it was, missing Leo and pointing out the things he would have liked, considering how to make the San Juans possible for him.
And then, five weeks later and after BlogHer '11, we did take a full-family vacation. In San Diego, the most Leo-friendly town in California. Where we could stay with my mom (another spectacular host), and walk to the beach every day -- or twice every day. Where we know fantastic respite workers who think Leo is dreamy. Where wonderful organizations like Surfers Healing will take our boy out and show him how to ride the waves on a a longboard. Where we were happy, all five of us -- even though my husband and I were also exhausted. But it was a good exhaustion, an earned exhaustion, an enviable exhaustion.
I don't feel guilty when we go on trips with Leo while his sisters are at sleepaway camps. I really need to get over that. One more area where the issues that need working through are mine, not my son's.
----
A version of this post originally appeared at BlogHer.com. Shannon spent this past weekend fretting again as Leo went to camp and the rest of the family went to Pinnacles National Monument. Which was glorious. As was Leo's own, separate vacation.
www.squidalicious.com
www.thinkingautismguide.com
When we told people we were spending a week on a summer family vacation with our girls -- but without our son Leo, who has high-octane autism, responses varied. The best reactions stayed positive without dwelling on the details of our abandonment: "Wow, that sounds like fun, all that time in the San Juan Islands!" More well-intentioned reactions stoked my already-raging guilt-fires: "Well, you know, those girls really deserve a break, and so do you -- it's about time you had a regular family vacation."I know those latter folks meant well, but it's amusing to me that, because of his autism, sweet-natured Leo is assumed to be the kid we need a vacation from -- when in truth it's his fiery, defiant, bickering sisters who are currently draining the parenting lifeblood from my veins.
Still, I felt guilty leaving Leo behind. I kept telling myself we weren't excluding him -- he went to his beloved camp that week, so it didn't matter to him whether we stayed home or circumnavigated the globe. But we also were spending a week on his grandparents' boat. Which he loves. Loves loves loves. That seemed sneaky and uncool.
Here's where the guilt-flames turn to bonfires -- we planned a completely different vacation without Leo along. Instead of spending two nights on the boat as we did with him last year, we stayed afloat nearly a week. Instead of sticking to the waters near the home port in Lake Washington, we sailed through Seattle's locks, into Puget Sound, and all the way to Orcas Island.
It was glorious. My in-laws are spectacular hosts, we were on a damn boat, y'all, and the girls managed to mostly rein in their cage match tendencies. I also told myself we were scoping the area, to see if it would be reasonable to bring Leo to the Islands next year. Still, it was not always easy to surrender to the bliss of the San Juans' straits, vistas, pottery studios, and orca sightings while aware that our family was minus one. (Though my in-laws' generosity in sharing their lovely wines helped.)
I know Leo was fine, too. Better than fine -- the camp had Jennyalice on tap should Leo need a local to help him out or come get him, plus when I came back from Seattle to pick him up, he was having so much fun that he made a stink about coming home. And I really don't think he would have enjoyed our version of a boat trip -- he's not ready for an nautical excursion of that length, plus quarters on boats are tight; they're not ideal places to soothe a homesick autistic boy out of a decibel-heavy meltdown. But taking our family to Orcas and staying on the islands themselves? Now that I've seen them, I think that might work for Leo.
So we enjoyed our surreally wonderful boat trip, while I tried not to talk about how guilty I felt for leaving Leo in the Bay Area, or how worried I was about all the things that could possibly happen in our absence. We lounged at restaurants whose menus our selective eater Leo might not appreciate. Seymour and the girls took long, languid kayak trips to places where our little fish Leo might have been tempted to jump overboard. We lingered at Friday Harbor's Whale Museum, which would not have impressed Leo at all. We had a great time, enjoying our vacation for what it was, missing Leo and pointing out the things he would have liked, considering how to make the San Juans possible for him.
And then, five weeks later and after BlogHer '11, we did take a full-family vacation. In San Diego, the most Leo-friendly town in California. Where we could stay with my mom (another spectacular host), and walk to the beach every day -- or twice every day. Where we know fantastic respite workers who think Leo is dreamy. Where wonderful organizations like Surfers Healing will take our boy out and show him how to ride the waves on a a longboard. Where we were happy, all five of us -- even though my husband and I were also exhausted. But it was a good exhaustion, an earned exhaustion, an enviable exhaustion.
I don't feel guilty when we go on trips with Leo while his sisters are at sleepaway camps. I really need to get over that. One more area where the issues that need working through are mine, not my son's.
----
A version of this post originally appeared at BlogHer.com. Shannon spent this past weekend fretting again as Leo went to camp and the rest of the family went to Pinnacles National Monument. Which was glorious. As was Leo's own, separate vacation.
Friday, February 17, 2012
Autism Works: A Bottle of Sunshine
Scott Standifer
Autism Works National Conference
We are in the dregs of winter where I live, and I’ve got the blahs. Everything is cold and grey, the branches are bare, the patches of snow are dirty, and spring seems like it will never get here. Our family’s latest antidote has been listening to a song on one of my son’s old toddler CDs--Bottle of Sunshine by Milkshake. It is a peppy song about a child who finds ways to be unstoppably proactive and creative to entertain herself on days when there is “nothing to do.” (Of course, you can’t really put sunshine in a bottle--that is a metaphor for something fun or cheerful that helps you feel good.)
That’s a good metaphor for our upcoming Autism Works National Conference -- an antidote for the blahs.
There are a lot of people discouraged over the prospects for autism employment right now, and with good reason. Most of the state vocational rehabilitation (voc rehab) offices--which are supposed to help people with disabilities find jobs--don’t seem to understand autism very well. The parent advocates and special ed folks who are trying to make their own solutions are often struggling to understand job development and workplace needs. The large autism advocacy groups haven’t been doing much. Employers don’t seem to understand the potential of adults on the spectrum. Autism employment rates are abysmal. National experts spout gloom about the future implications.
Compared to that, Autism Works is a big bottle of sunshine.
Our opening keynote speaker is Deb Russell, Manager of Outreach and Employee Services for Walgreens and president of the U.S. Business Leadership Network. She will talk about how Walgreens expects to roll out its innovative autism employment program to ALL Walgreens retails stores nationwide. Andy Traub of AMC Theatres will present later that day, talking about how AMC Theatres is doing the same thing with all of their local theatres. Both presenters say lots of other corporations are visiting them to learn about implementing such programs themselves.
Nationally-known autism consultant James Emmett will present on exciting developments in corporate diversity initiatives and autism. The federal government is pressuring businesses to hire more people with disabilities, and corporations are starting to notice the opportunities offered by the autism community. Big plans are afoot, and James is in the middle of them.
Our second-day keynote speaker is self-advocate and author Dr. Stephen Shore, who will talk about lessons we can learn from the employment successes of prominent people on the spectrum. Brian King, another autism self-advocate and a licensed Clinical Social Worker, will present on social networking skills in the workplace. Ari Ne’eman, who is a noted autism political activist and founder of the Autistic Self Advocacy Network (ASAN), will present on overcoming barriers of social architecture. ASAN, is one of the first self-advocacy groups to begin addressing autism employment directly. In September, 2011, ASAN announced a collaboration with mortgage investment company Freddie Mac to provide several internships for adults on the spectrum in the Washington, D.C. area.
Autism employment specialist Katina Demetriou will discuss POW&R -- the innovative, productive collaboration between Delaware Voc Rehab and Autism Delaware on transition services for autism. That program was identified in the fall of 2010 as one of the exemplary autism employment service providers in the country.
Missouri Voc Rehab Autism Coordinator Karla Bunch will describe her agency's emerging new model for services to clients with autism. This model is based on input from a regional stakeholders working group and is the first of its kind in the country. Karla's team is also working in conjunction with local disability employment service providers on creating new, autism-friendly assessment and employment service models. We expect to see big contingents attending from other interested voc rehab agencies, such as those of Minnesota and Oklahoma.
There are also exciting things on the IT front. You may have heard about Aspiritech, the Chicago company that is hiring folks with Asperger’s to do software testing. Aspiritech was inspired by a Danish company called Specialisterne, which has also inspired a few other groups, including Passwerk in Belgium and Autism Works UK. We will have them all on a “vitual panel” via Skype. We will move the conversation beyond “Isn’t this cool?” to “What lessons are emerging? What works and doesn’t work?”
Disability self-advocate Kathy Moeller will be demoing her “cognitive prosthetic” software My Bionic Brain™ . This new iPad application is tailored for people with "cognitive inconveniences" (as Kathy calls them) like autism, including strategies for dividing and alternating attention, remaining oriented in time and space, cognitive flexibility, communication, emotional control and executive function. It is an extension of the successful BrainBook®--a print-based tool that Kathy developed and marketed after she acquired a significant Traumatic Brain Injury (TBI) following a car accident in 1990. (Kathy and I recently compared notes on support needs for adult with TBI and with autism, and we were amazed at the similarities.)
Other session topics include:
You can more read about all the sessions in the (updated to fix link) Autism Works National Conference agenda.
As I think about all of this, it is still grey and gloomy outside my office window. Last year at about this time I remember the weather giving me this same dragging feeling.
Then I went to the Autism Works conference. It was so energizing! People were there from 25 states, including staff from multiple voc rehab and state DD agencies, parents advocates, self-advocates, academics, and business people. Everywhere you turned, people were sharing ideas and stories, and proposing collaborations. There was no question about whether people with autism could or should work--it was just a matter of “rolling up our sleeves” and figuring out how to make it happen. Everyone was ready to pitch in and help.
It was like a big bottle of sunshine.
----
The Autism Works National Conference will be held March 6 & 7, 2012, in St. Louis Missouri. Details are available on the conference Facebook page or at http://dps.missouri.edu/Autism/AutismConf.html. You can register for the conference here.
Autism Works National Conference
We are in the dregs of winter where I live, and I’ve got the blahs. Everything is cold and grey, the branches are bare, the patches of snow are dirty, and spring seems like it will never get here. Our family’s latest antidote has been listening to a song on one of my son’s old toddler CDs--Bottle of Sunshine by Milkshake. It is a peppy song about a child who finds ways to be unstoppably proactive and creative to entertain herself on days when there is “nothing to do.” (Of course, you can’t really put sunshine in a bottle--that is a metaphor for something fun or cheerful that helps you feel good.)
That’s a good metaphor for our upcoming Autism Works National Conference -- an antidote for the blahs.
There are a lot of people discouraged over the prospects for autism employment right now, and with good reason. Most of the state vocational rehabilitation (voc rehab) offices--which are supposed to help people with disabilities find jobs--don’t seem to understand autism very well. The parent advocates and special ed folks who are trying to make their own solutions are often struggling to understand job development and workplace needs. The large autism advocacy groups haven’t been doing much. Employers don’t seem to understand the potential of adults on the spectrum. Autism employment rates are abysmal. National experts spout gloom about the future implications.
Compared to that, Autism Works is a big bottle of sunshine.
Our opening keynote speaker is Deb Russell, Manager of Outreach and Employee Services for Walgreens and president of the U.S. Business Leadership Network. She will talk about how Walgreens expects to roll out its innovative autism employment program to ALL Walgreens retails stores nationwide. Andy Traub of AMC Theatres will present later that day, talking about how AMC Theatres is doing the same thing with all of their local theatres. Both presenters say lots of other corporations are visiting them to learn about implementing such programs themselves.
Nationally-known autism consultant James Emmett will present on exciting developments in corporate diversity initiatives and autism. The federal government is pressuring businesses to hire more people with disabilities, and corporations are starting to notice the opportunities offered by the autism community. Big plans are afoot, and James is in the middle of them.
Our second-day keynote speaker is self-advocate and author Dr. Stephen Shore, who will talk about lessons we can learn from the employment successes of prominent people on the spectrum. Brian King, another autism self-advocate and a licensed Clinical Social Worker, will present on social networking skills in the workplace. Ari Ne’eman, who is a noted autism political activist and founder of the Autistic Self Advocacy Network (ASAN), will present on overcoming barriers of social architecture. ASAN, is one of the first self-advocacy groups to begin addressing autism employment directly. In September, 2011, ASAN announced a collaboration with mortgage investment company Freddie Mac to provide several internships for adults on the spectrum in the Washington, D.C. area.
Autism employment specialist Katina Demetriou will discuss POW&R -- the innovative, productive collaboration between Delaware Voc Rehab and Autism Delaware on transition services for autism. That program was identified in the fall of 2010 as one of the exemplary autism employment service providers in the country.
Missouri Voc Rehab Autism Coordinator Karla Bunch will describe her agency's emerging new model for services to clients with autism. This model is based on input from a regional stakeholders working group and is the first of its kind in the country. Karla's team is also working in conjunction with local disability employment service providers on creating new, autism-friendly assessment and employment service models. We expect to see big contingents attending from other interested voc rehab agencies, such as those of Minnesota and Oklahoma.
There are also exciting things on the IT front. You may have heard about Aspiritech, the Chicago company that is hiring folks with Asperger’s to do software testing. Aspiritech was inspired by a Danish company called Specialisterne, which has also inspired a few other groups, including Passwerk in Belgium and Autism Works UK. We will have them all on a “vitual panel” via Skype. We will move the conversation beyond “Isn’t this cool?” to “What lessons are emerging? What works and doesn’t work?”
Disability self-advocate Kathy Moeller will be demoing her “cognitive prosthetic” software My Bionic Brain™ . This new iPad application is tailored for people with "cognitive inconveniences" (as Kathy calls them) like autism, including strategies for dividing and alternating attention, remaining oriented in time and space, cognitive flexibility, communication, emotional control and executive function. It is an extension of the successful BrainBook®--a print-based tool that Kathy developed and marketed after she acquired a significant Traumatic Brain Injury (TBI) following a car accident in 1990. (Kathy and I recently compared notes on support needs for adult with TBI and with autism, and we were amazed at the similarities.)
Other session topics include:
- The Emerging Autism Toolkit in the Post-Secondary Ed World (a review of the strategies colleges and universities are using to support the autism community)
- The Methodological Toolbox for Workplace Supports
- How to Do Social Coaching
- Customized Self-Employment for People with Autism
You can more read about all the sessions in the (updated to fix link) Autism Works National Conference agenda.
As I think about all of this, it is still grey and gloomy outside my office window. Last year at about this time I remember the weather giving me this same dragging feeling.
Then I went to the Autism Works conference. It was so energizing! People were there from 25 states, including staff from multiple voc rehab and state DD agencies, parents advocates, self-advocates, academics, and business people. Everywhere you turned, people were sharing ideas and stories, and proposing collaborations. There was no question about whether people with autism could or should work--it was just a matter of “rolling up our sleeves” and figuring out how to make it happen. Everyone was ready to pitch in and help.
It was like a big bottle of sunshine.
----
The Autism Works National Conference will be held March 6 & 7, 2012, in St. Louis Missouri. Details are available on the conference Facebook page or at http://dps.missouri.edu/Autism/AutismConf.html. You can register for the conference here.
Wednesday, February 15, 2012
What Can Technology Do For You?
Jen Lee Reeves
www.bornjustright.com
Jen Lee Reeves is one of those people who always has a big smile and a big goal. She teaches social media and engagement at the Missouri School of Journalism and is the interactive director at KOMU 8 TV, the only university-owned commercial television station in the United States. She has built a great community on her website Born Just Right, and has plans to present on a panel at SXSW (South by Southwest) a series of conferences held in Austin that brings multimedia professionals together. She's hoping our community can offer additional perspectives.
What inspired you to get involved in the special needs community?
My daughter was born in December of 2005 with a limb difference. She has a typical right arm and a left arm that stops right after the humerus and growth plate. I immediately felt the need to connect with other families of limb differences to learn about this world ... which I had not even known existed until the day she was born. My desire to find community led to a website that has introduced me to so many different people inside the special needs world. I have learned by experience that most people who are touched by special needs have similar experiences. We can all lean on each other and learn from each other.
How did you end up on a panel at SXSW and what can the people at SXSW offer?
I am a journalist by trade and found a calling to attend the SXSW conference for the last number of years. I've learned there is an incredibly diverse group of people who believe in using technology to build community and connections. There are so many different motivations, but similar goals. I proposed a panel discussion about the special needs community because I realized I should continue to find ways to blend my two priorities: community building and special needs. I've found at SXSW, there are so many smart people, you end up coming up with amazing ideas. If we can target new ways to bring special needs families together, the tech world might be able to help take those ideas and make them into reality.
Is this just about physical disability?
This panel is focused on all special needs communities. The more I talk to families with special needs and adults with special needs, the more I realize we each deal with many of the same emotional and logistical challenges. I learned so many concepts on how to work with my school and therapists from families of children with a wide range of differences. Adults bring additional perspective on technology uses and with them we can brainstorm on new ideas. I'd really love as many different perspectives as possible. It will make this panel that much better!
What kind of things are you looking for from the TPGA community?
I'm looking for anyone to share video of the ways technology currently helps in their lives, and share ideas on ways technology could be improved. The autism community has already found incredible ways to blend technology into therapies and communication. I'd love to see the many ways the tech world is making a difference and what things you wish existed today -- those ideas might be able to come true!
What will happen after SXSW? What are the next steps?
After SXSW, I hope to report back to all of the communities that shared their ideas, then see if there are projects and funding to build or experiment. I'm really hoping some people who are passionate about improving the special needs world will consider donating time to test out ideas we come up with during the panel.
How can someone get more involved?
I'd love to see anyone and everyone share videos. I have posted an introduction to the project: http://bit.ly/SXsnVID - If you aren't comfortable with video, please share your thoughts and ideas on my post about this project: http://bit.ly/SXsnPreview
Will you be having a meetup at SXSW?
We are hoping to have an unofficial meetup near the Omni Hotel after the panel discussion. If you plan to be there, we'll discuss it at the end of our session. I'll also tweet out details when I have them using the #SXsn (South by special needs) hashtag on Twitter and Google+.
Here's a link to the panel page: http://schedule.sxsw.com/2012/
----
Registration is still open for SXSW for anyone who is interested in attending. Interactive: March 9–13, Film: March 9–17, Music: March 13–18
www.bornjustright.com
Jen Lee Reeves is one of those people who always has a big smile and a big goal. She teaches social media and engagement at the Missouri School of Journalism and is the interactive director at KOMU 8 TV, the only university-owned commercial television station in the United States. She has built a great community on her website Born Just Right, and has plans to present on a panel at SXSW (South by Southwest) a series of conferences held in Austin that brings multimedia professionals together. She's hoping our community can offer additional perspectives.
What inspired you to get involved in the special needs community?
My daughter was born in December of 2005 with a limb difference. She has a typical right arm and a left arm that stops right after the humerus and growth plate. I immediately felt the need to connect with other families of limb differences to learn about this world ... which I had not even known existed until the day she was born. My desire to find community led to a website that has introduced me to so many different people inside the special needs world. I have learned by experience that most people who are touched by special needs have similar experiences. We can all lean on each other and learn from each other.
How did you end up on a panel at SXSW and what can the people at SXSW offer?
I am a journalist by trade and found a calling to attend the SXSW conference for the last number of years. I've learned there is an incredibly diverse group of people who believe in using technology to build community and connections. There are so many different motivations, but similar goals. I proposed a panel discussion about the special needs community because I realized I should continue to find ways to blend my two priorities: community building and special needs. I've found at SXSW, there are so many smart people, you end up coming up with amazing ideas. If we can target new ways to bring special needs families together, the tech world might be able to help take those ideas and make them into reality.
Is this just about physical disability?
This panel is focused on all special needs communities. The more I talk to families with special needs and adults with special needs, the more I realize we each deal with many of the same emotional and logistical challenges. I learned so many concepts on how to work with my school and therapists from families of children with a wide range of differences. Adults bring additional perspective on technology uses and with them we can brainstorm on new ideas. I'd really love as many different perspectives as possible. It will make this panel that much better!
What kind of things are you looking for from the TPGA community?
I'm looking for anyone to share video of the ways technology currently helps in their lives, and share ideas on ways technology could be improved. The autism community has already found incredible ways to blend technology into therapies and communication. I'd love to see the many ways the tech world is making a difference and what things you wish existed today -- those ideas might be able to come true!
What will happen after SXSW? What are the next steps?
After SXSW, I hope to report back to all of the communities that shared their ideas, then see if there are projects and funding to build or experiment. I'm really hoping some people who are passionate about improving the special needs world will consider donating time to test out ideas we come up with during the panel.
How can someone get more involved?
I'd love to see anyone and everyone share videos. I have posted an introduction to the project: http://bit.ly/SXsnVID - If you aren't comfortable with video, please share your thoughts and ideas on my post about this project: http://bit.ly/SXsnPreview
Will you be having a meetup at SXSW?
We are hoping to have an unofficial meetup near the Omni Hotel after the panel discussion. If you plan to be there, we'll discuss it at the end of our session. I'll also tweet out details when I have them using the #SXsn (South by special needs) hashtag on Twitter and Google+.
Here's a link to the panel page: http://schedule.sxsw.com/2012/
----
Registration is still open for SXSW for anyone who is interested in attending. Interactive: March 9–13, Film: March 9–17, Music: March 13–18
Monday, February 13, 2012
Kate Winslet's Autism Awareness Project: The Golden Hat
Carol Greenburg, Shannon Des Roches Rosa, and Jennifer Byde Myers
www.ThinkingAutismGuide.com
Thinking Person's Guide to Autism editors Carol, Shannon, and Jennifer recently attended an event celebrating the work of Kate Winslet. Kate has a new autism awareness and fundraising book coming out next month called The Golden Hat: Talking Back to Autism. We were told the book is meant to shine "a light on a world very few people understand [...] about people with profound autism and the challenges they and their
families face every day, as well as all the 'beautiful potential' of
people with autism."
www.ThinkingAutismGuide.com
Thinking Person's Guide to Autism editors Carol, Shannon, and Jennifer recently attended an event celebrating the work of Kate Winslet. Kate has a new autism awareness and fundraising book coming out next month called The Golden Hat: Talking Back to Autism. We were told the book is meant to shine "a light on a world very few people understand [...] about people with profound autism and the challenges they and their
families face every day, as well as all the 'beautiful potential' of
people with autism."
The event was hosted by Ladies' Home Journal, and featured Margret Ericsdottir, whose son Keli is the inspiration for The Golden Hat Foundation. (Kate is currently on the cover of LHJ, talking about how she was inspired to create The Golden Hat book and foundation with Margret; Margret is the foundation's President and CEO.)
The Golden hat book (which Kate fought "tooth and nail" to get made) features photos of Kate's celebrity friends Tom Hanks, Meryl Streep, Kobe Bryant, Conan O'Brien, and many others wearing Kate's old Trilby Hat, and saying something about who they are, what is important to them. Some of these statements are poignant: Reese Witherspoon said "Love one another." Some are amusing: George Clooney said, "I'm sorry about Batman and Robin." The celebrities are featured alongside non-speaking people with autism, who offer their own statements, like Keli's "I am real."
The book also describes the inspiration and journey of The Golden Hat. Kate and Margret met when when Kate did the voiceover for Iceland native Margret's autism documentary A Mother's Courage (which at the event Margret
noted she title The Sunshine Boy, but HBO retitled). Kate and Margret became friends and joined forces, and now have two goals the Golden Hat Foundation is trying to make real:
- Short term: Improve awareness of the capabilities of people living with autism.
- Long term: Provide assisted living campuses where those with severe autism can receive education direction and job training in an environment that supports their individual strengths.
At the event, we were told "the Golden Hat Foundation doesn't just raise awareness about autism, but it's proof
of what happens when determined moms band together to create change." Margret talked about the terrible feeling she used to have,
of not being able to help her own child; and how important it is for
people to understand that non-speaking Autistic people can be capable,
can contribute to society.
A final goal: Kate and Margret want to get The Golden Hat book into the hands of every educator in America,
so those educators can understand how capable students with autism are.
----
Shannon and Jennifer joined the event via conference call and were not able to view the Golden Hat team's autism videos, but Carol was at the event in person and had constructive criticism on the videos and the project in general. We hope Carol's insights can help shape and fine-tune The Golden Hat Foundation's vision and goals.
Carol: From what I was able to process, the videos were definitely a notch above the typical "helpless kids trapped inside the prison that is autism." Everyone looked happy, no meltdown shots, autism-as-kidnapper metaphors, or parental suicide/homicide nightmares. There was a serious attempt at a balance between autistics and parents expressing themselves, all in a pretty calm positive way, all of which I like. The Golden Hat Foundation focuses on empowering non-speaking autistics and their families, which allowed their videos to present a refreshing change from the usual interview montage of one token non-speaking adult literally outspoken by autistic chatty Kathies like me.
What was missing and would have like to have seen were a few substantive comments by older non-speaking kids about their specific goals and how they think The Golden Hat could help them achieve those goals. Common problem, in my opinion, with parent-produced videos. It's no longer enough, at least for me, to show that autistics are people too and some of us are even pretty happy people. Like I said during the comment period at the event, independence, and contentment are nice, but they're not enough -- what I want for my son is indispensability. I think Golden Hat needs to set bar higher by demonstrating what autistics, whether they use spoken language or not, contribute to the world because of, not despite our autism.
We were told the mission of the Golden Hat Foundation is "the establishment of
innovative campuses that offer people with autism the opportunity to
learn to communicate effectively, receive an education, job training and
enjoy recreational activities, all within a supportive social network."
The campuses were described to us as having three levels of care: 24 hour care; assisted living so folks can
have their own apartment but with accomodations like wearable sensors that
turn the stove off when they go through the front door; and totally
independent. We were also told "There's a thought that if parents wanted to, they could build a
home and live with their children there. Why an isolated campus
instead of integrating out? Because it's too hard to change people's
attitudes in such a short time -- it'll be easier to bring people in, e.g.,
let the people who work there live onsite. Start showing what people with autism are like, what an inclusive campus can be like."
Carol: The community housing campus plan is pretty. Sounds like they'd be open to input from universal design experts, and I'd like to think some of those folks would be autistic. I have no problem with intentional communities. I can see why their model would appeal to many autistic people and their families, so they'd be able to pull in residents, and I certainly admire the commitment to inclusion. My question is, if they're trying to lure non-autistic people into an autistic community, rather than integrate autistic people into a primarily non-autistic community, then how exactly do they propose to bring in neurotypical (NT) people on a large and consistent scale? As all family members know, it can be a challenge to spend a lot of time around autistic folks, and unless NTs have a vested interest in an autistic individual, I'd think they would need a heck of an incentive to live on, work on, or even consistently visit such a campus. Not sure exactly what that incentive would look like.
From the Golden Hat Foundation website: People with autism carry a double burden. In addition to their daily speech and sensory challenges, they must also cope with negative attitudes of society, inadequate support for their needs and, in some cases, outright discrimination. Sadly, people with autism are often labeled “cognitively impaired.” Because communication skills are an integral part of how most professionals determine a person's intelligence, their communication impairments can severely affect their
ability to perform on standardized intelligence tests.
Carol: I think Golden Hat has to be a little more careful with their phrasing in their laudable intent to make the point that autism does not necessarily equal intellectual disability. My kid and Margret's kid, don't have intellectual disabilities, but some autistic people do. There is a subtle, but significant difference between saying autism and intellectual disabilities are not inherently related and saying they are by definition not related. I very much doubt Golden Hat wants to say that only autistics like me or my child have something to contribute, but that was how their message came across.
Friday, February 10, 2012
The DSM-V Changes From a Late-Diagnosed Adult's Perspective
Charli Devnet
Charli writes: In view of the firestorm surrounding the proposed changes to the DSM-V criteria for the diagnosis of autism spectrum disorder, an open debate on the nature and scope of autism and what it means to be autistic might be in order.
----
I’m not an expert, but I am autistic. All my life I searched for the answer to a seemingly inexplicable riddle, “Just what is wrong with me?”
At the age of 54, I was diagnosed with Asperger syndrome. The diagnosis, when I finally acquired one, was not a surprise, not to me nor to anyone who had known me for any significant time. I’m far from a borderline case. No one came up to me and said, “You? We just cannot believe it!” Instead, a number of people greeted my disclosure with the response, “We thought so all along.”
Not content to simply have found the key to unraveling the mysteries of my past, I became somewhat obsessive, as Aspies are prone to do, and raided the local libraries and bookstores for literature on autism and the autism spectrum, and I searched the internet for hours on end for all the knowledge I could absorb. Ironically, the more information I acquired, the more confused I became.
I thought I knew what autism was. Eugen Bleiler, a Swiss psychiatrist treating childhood schizophrenics, coined the term a century ago to refer to the tendency of his patients to withdraw from the world. “Autism” is derived from the Greek word meaning “self,” and therefore, it seemed to me, autism meant “self alone,” and denoted a person who lived in a universe of one. That made sense to me, because, most of my life, I had indeed been stranded in a world apart.
Perhaps I should have figured it out a long time ago. I had had no delays in verbal skills. That may be what threw me off. From the age of two, I was highly articulate and talked what my mother used to call “a blue streak” about my favorite subjects. I talked a bit funny, it is true, muttered and mumbled without proper enunciation, and tended to babble on even when no one was listening -- but I sure had a wide vocabulary. In all other areas of life, however, I was, and remain, profoundly autistic.
Even as a bright, bouncy tomboy in the 1960s, I had been called a misfit. I had not been considered disabled, but rather as a gifted child with behavioral problems. My teachers treated me rather harshly, believing that such an intellectually advanced child -- and a girl, at that -- should have known better than to throw tantrums and cause disruptions in class. Other kids mocked me for my poor motor skill coordination, my strange food aversions, and because, as I said, I did talk a little funny. Schoolyard bullies targeted me, for reasons that I could never quite grasp. Nevertheless, I did pretty well, all in all. I did have friends of my own. My grades in school were high even though class work often bored me. I pursued my special interests and, if my schoolmates harassed me, I could take comfort in a network of supportive aunts, uncles, and grandparents. Like most kids in the sixties, I was accorded a measure of freedom that is unknown to the children of today. When the bullies tormented me, I hopped on my bike and sped away. Eventually I learned to fight back.
Then it all changed. My parents sold our house in my hometown and moved up north, to a land where it was always winter, and the winter seeped into my soul. As a bitterly lonely teenager, I withdrew into an inner life of fantasy and imagination. As Tony Attwood has stated, this is a defensive mechanism resorted to by many aspiegirls to cope with an intolerable reality. As an adult, I tried my best to rejoin the world, but found that it was not so easy. Wherever I went, I was a stranger. I could not fit in no matter earnestly I tried. I was not just socially awkward; I was socially dysfunctional, a deficit which a high IQ and several college degrees could not offset. It appeared that I was permanently fated to be the outsider looking in like a child with her nose frozen against the windowpane or rapping upon a door which would never open. Yes, I could see that the term “autism” applied to me.
Yet, as I delved further into my research, I realized that the modern understanding of “autism” did not necessarily refer to a world on one’s self, but was more commonly used to describe a panoply of behaviors associated with autistic persons, such as sensory processing difficulties, repetitive motions, difficulties in social interaction, resistance to change, insistence upon routine, poor motor skills, deep but narrow interests and so forth.
By their fruits, you will know them. I suppose so, but the focus has shifted to all fruit and no tree. Because all attention was now concentrated on the outward manifestations of autism, the original meaning of the term had been forgotten. People self-identified as autistic, and, indeed, were professionally diagnosed with ASD that were not, in any sense, living in a universe of one. In fact, many of these persons now seen as on the spectrum would meet my criteria for “perfectly normal;” they have successful careers, loving marriages, families of their own, and a place in the community. As our understanding of the autism spectrum has evolved to include individuals who are far removed from the classical definition of autism, the inevitable backlash has arisen. Hence, there are suggestions of over-diagnosis, and the DSM-V Committee has proposed to redefine the guidelines for ASD in an apparently more restrictive manner.
Lost in the furor that has erupted and the allegations and recriminations flying back and forth, are the key questions that should be agreed upon before any revisions are made: Just what does it mean to be autistic? What are the limits to the autism spectrum? What essentially differentiates autistic persons from those who are not autistic? Is it merely a matter of behavior -- and if it is, autism can indeed be “cured,” for behaviors can change, or is there something inborn in autistic persons which is not present with neurotypicals and will persist even if their behaviors are modified?
I have not yet taken a position on the proposed changes to the DSM-V because I am still uncertain what the impact of the new criteria will be, or whether the benefits wrought by the changes will outweigh the detriments. Some have surmised that, under the new DSM-V, adults on the autistic spectrum who have grown up undiagnosed will not be able to obtain an ASD diagnosis later in life, as I did. If that is the case, the changes will do a great deal of harm. The relief and empowerment I felt when I was diagnosed and finally discovered what “was wrong with me” were overwhelming. The diagnosis came at a very low point in my life, soon after my parents and other family members had passed away, and I was immobilized by grief, depression, loneliness, and anxiety. It literally gave me a second life.
The diagnosis of Asperger syndrome also freed me from the burden of shame that I had carried on my shoulders for decades. When I was a child my mother had boasted to all her in-laws of my high intelligence and how I was so much superior to all my excruciatingly mediocre cousins. However, as the years unfolded, all the boring typical cousins went on to have respectable careers, marriages, homes, and families of their own while this little savant fell flat on her face. My early promise was forgotten and now when people looked at me they saw only my social ineptitude, strange behavior, inability to function as a mature independent adult and -- despite a lot of education -- my failure to eke out more than a subsistence living from a patchwork quilt of part-time jobs. Like many Aspies of my generation, I was blamed for my own miscues and seen as a lazy, slovenly, no-good bum and a bitter disappointment to those who had once believed in me. Diagnosis brought me the realization that it really was not “all my fault “as I had been led to believe, and enabled me to stop apologizing and regain a measure of pride. I would not want to sign onto anything which might deprive other autistic adults of the same gift of self-discovery that I was finally granted.
On the other hand, I find it perfectly logical to suppose that there is a measure of overdiagnosis going on, especially at the childhood level. I have worked in law offices where we represented Workers’ Compensation and Social Security Disability claimants. I am aware that many sympathetic physicians will exaggerate their patients’ impairments so that the applicant might qualify more easily for benefits. By the same token, it would not surprise me if schools were assessing borderline children as autistic so that they might receive services that they would otherwise not be entitled to. Something more sinister might be going on as well. Just as the makers of diet products have grown rich convincing virtually all of us that we need to lose weight, an industry has grown up around the “autism epidemic” which has a vested interested in keeping the numbers high. Imagine, if you will, that you held a high-paid position as a fundraiser for a non-profit dedicated to autism research. You would be more secure in your job if you could loudly trumpet to frightened parents and grandparents that one out of every ninety children will be diagnosed as autistic. One out of every 900? Not so secure. And if that number was understood to include not only sweet adorable tots, but fat balding fifty-year-olds? Not a chance.
I do not find the argument made by many on our side that access to programs and services might be restricted under the new criteria all that compelling. The allocation of resources is a political and economic argument, not scientific one. I am mystified by those who appear to believe that, the more expansive the autism spectrum is, the more people will have access to services. The opposite might well occur and access decrease for those on the more challenged end of the spectrum. We are not dealing with an infinite steam of resources, and the parents of non-speaking intensely autistic kids well resent their children having to share what services and programs are available with high functioning Aspies like me. If you have sought government assistance recently, either for yourself or for a charity, you know how difficult obtaining such help has become. Our government may spend untold sums on the newest weapons systems, on invading Middle Eastern countries, in baling out Wall Street, but for the poor, the disabled, the unemployed, the uninsured the pie is shrinking quickly. Before we increase the demand, we should be sure that the demand will be answered.
What bothers me most of all is this: the term “autism” is in danger of becoming so amorphous that it will lose all significance. Temple Grandin, the great autistic scientist, writes in her book “As I See It” about three types of autistic minds: the visual thinkers like herself, who can take things apart and put things together; pattern thinkers who are good at math and music; and verbal thinkers such as myself whose skill lies with words.
As a verbal thinker, I want words to mean something. Indeed, I do not feel safe around words that have no definite or discernible meaning. When I hear label “autistic” thrown around to denote various and sundry disorders, I cringe. The autism spectrum may well be wide and varied, but it should nevertheless have a distinct beginning and an end. Autism is not something that can be seen through a microscope or revealed in a sonogram, at least, not yet. Nevertheless, the diagnostic criteria cannot be totally subjective. I understand the motivations which lead well-intentioned persons in the community to say, “The more the merrier” and let us define the spectrum as broadly as possible, but that sentiment neither gives me comfort nor helps me to understand what it means to be autistic.
I have always known that in some fundamental way I am different from other people, and that this difference was not shared by many, but by very few. Not everyone has a “touch of autism.” If that were indeed the case, then the diagnosis would have no significance, and I might as well reclaim my childhood label of “misfit.” At least people were in agreement as to what that word meant.
Charli writes: In view of the firestorm surrounding the proposed changes to the DSM-V criteria for the diagnosis of autism spectrum disorder, an open debate on the nature and scope of autism and what it means to be autistic might be in order.
----
I’m not an expert, but I am autistic. All my life I searched for the answer to a seemingly inexplicable riddle, “Just what is wrong with me?”
At the age of 54, I was diagnosed with Asperger syndrome. The diagnosis, when I finally acquired one, was not a surprise, not to me nor to anyone who had known me for any significant time. I’m far from a borderline case. No one came up to me and said, “You? We just cannot believe it!” Instead, a number of people greeted my disclosure with the response, “We thought so all along.”
Not content to simply have found the key to unraveling the mysteries of my past, I became somewhat obsessive, as Aspies are prone to do, and raided the local libraries and bookstores for literature on autism and the autism spectrum, and I searched the internet for hours on end for all the knowledge I could absorb. Ironically, the more information I acquired, the more confused I became.
I thought I knew what autism was. Eugen Bleiler, a Swiss psychiatrist treating childhood schizophrenics, coined the term a century ago to refer to the tendency of his patients to withdraw from the world. “Autism” is derived from the Greek word meaning “self,” and therefore, it seemed to me, autism meant “self alone,” and denoted a person who lived in a universe of one. That made sense to me, because, most of my life, I had indeed been stranded in a world apart.
Perhaps I should have figured it out a long time ago. I had had no delays in verbal skills. That may be what threw me off. From the age of two, I was highly articulate and talked what my mother used to call “a blue streak” about my favorite subjects. I talked a bit funny, it is true, muttered and mumbled without proper enunciation, and tended to babble on even when no one was listening -- but I sure had a wide vocabulary. In all other areas of life, however, I was, and remain, profoundly autistic.
Even as a bright, bouncy tomboy in the 1960s, I had been called a misfit. I had not been considered disabled, but rather as a gifted child with behavioral problems. My teachers treated me rather harshly, believing that such an intellectually advanced child -- and a girl, at that -- should have known better than to throw tantrums and cause disruptions in class. Other kids mocked me for my poor motor skill coordination, my strange food aversions, and because, as I said, I did talk a little funny. Schoolyard bullies targeted me, for reasons that I could never quite grasp. Nevertheless, I did pretty well, all in all. I did have friends of my own. My grades in school were high even though class work often bored me. I pursued my special interests and, if my schoolmates harassed me, I could take comfort in a network of supportive aunts, uncles, and grandparents. Like most kids in the sixties, I was accorded a measure of freedom that is unknown to the children of today. When the bullies tormented me, I hopped on my bike and sped away. Eventually I learned to fight back.
Then it all changed. My parents sold our house in my hometown and moved up north, to a land where it was always winter, and the winter seeped into my soul. As a bitterly lonely teenager, I withdrew into an inner life of fantasy and imagination. As Tony Attwood has stated, this is a defensive mechanism resorted to by many aspiegirls to cope with an intolerable reality. As an adult, I tried my best to rejoin the world, but found that it was not so easy. Wherever I went, I was a stranger. I could not fit in no matter earnestly I tried. I was not just socially awkward; I was socially dysfunctional, a deficit which a high IQ and several college degrees could not offset. It appeared that I was permanently fated to be the outsider looking in like a child with her nose frozen against the windowpane or rapping upon a door which would never open. Yes, I could see that the term “autism” applied to me.
Yet, as I delved further into my research, I realized that the modern understanding of “autism” did not necessarily refer to a world on one’s self, but was more commonly used to describe a panoply of behaviors associated with autistic persons, such as sensory processing difficulties, repetitive motions, difficulties in social interaction, resistance to change, insistence upon routine, poor motor skills, deep but narrow interests and so forth.
By their fruits, you will know them. I suppose so, but the focus has shifted to all fruit and no tree. Because all attention was now concentrated on the outward manifestations of autism, the original meaning of the term had been forgotten. People self-identified as autistic, and, indeed, were professionally diagnosed with ASD that were not, in any sense, living in a universe of one. In fact, many of these persons now seen as on the spectrum would meet my criteria for “perfectly normal;” they have successful careers, loving marriages, families of their own, and a place in the community. As our understanding of the autism spectrum has evolved to include individuals who are far removed from the classical definition of autism, the inevitable backlash has arisen. Hence, there are suggestions of over-diagnosis, and the DSM-V Committee has proposed to redefine the guidelines for ASD in an apparently more restrictive manner.
Lost in the furor that has erupted and the allegations and recriminations flying back and forth, are the key questions that should be agreed upon before any revisions are made: Just what does it mean to be autistic? What are the limits to the autism spectrum? What essentially differentiates autistic persons from those who are not autistic? Is it merely a matter of behavior -- and if it is, autism can indeed be “cured,” for behaviors can change, or is there something inborn in autistic persons which is not present with neurotypicals and will persist even if their behaviors are modified?
I have not yet taken a position on the proposed changes to the DSM-V because I am still uncertain what the impact of the new criteria will be, or whether the benefits wrought by the changes will outweigh the detriments. Some have surmised that, under the new DSM-V, adults on the autistic spectrum who have grown up undiagnosed will not be able to obtain an ASD diagnosis later in life, as I did. If that is the case, the changes will do a great deal of harm. The relief and empowerment I felt when I was diagnosed and finally discovered what “was wrong with me” were overwhelming. The diagnosis came at a very low point in my life, soon after my parents and other family members had passed away, and I was immobilized by grief, depression, loneliness, and anxiety. It literally gave me a second life.
The diagnosis of Asperger syndrome also freed me from the burden of shame that I had carried on my shoulders for decades. When I was a child my mother had boasted to all her in-laws of my high intelligence and how I was so much superior to all my excruciatingly mediocre cousins. However, as the years unfolded, all the boring typical cousins went on to have respectable careers, marriages, homes, and families of their own while this little savant fell flat on her face. My early promise was forgotten and now when people looked at me they saw only my social ineptitude, strange behavior, inability to function as a mature independent adult and -- despite a lot of education -- my failure to eke out more than a subsistence living from a patchwork quilt of part-time jobs. Like many Aspies of my generation, I was blamed for my own miscues and seen as a lazy, slovenly, no-good bum and a bitter disappointment to those who had once believed in me. Diagnosis brought me the realization that it really was not “all my fault “as I had been led to believe, and enabled me to stop apologizing and regain a measure of pride. I would not want to sign onto anything which might deprive other autistic adults of the same gift of self-discovery that I was finally granted.
On the other hand, I find it perfectly logical to suppose that there is a measure of overdiagnosis going on, especially at the childhood level. I have worked in law offices where we represented Workers’ Compensation and Social Security Disability claimants. I am aware that many sympathetic physicians will exaggerate their patients’ impairments so that the applicant might qualify more easily for benefits. By the same token, it would not surprise me if schools were assessing borderline children as autistic so that they might receive services that they would otherwise not be entitled to. Something more sinister might be going on as well. Just as the makers of diet products have grown rich convincing virtually all of us that we need to lose weight, an industry has grown up around the “autism epidemic” which has a vested interested in keeping the numbers high. Imagine, if you will, that you held a high-paid position as a fundraiser for a non-profit dedicated to autism research. You would be more secure in your job if you could loudly trumpet to frightened parents and grandparents that one out of every ninety children will be diagnosed as autistic. One out of every 900? Not so secure. And if that number was understood to include not only sweet adorable tots, but fat balding fifty-year-olds? Not a chance.
I do not find the argument made by many on our side that access to programs and services might be restricted under the new criteria all that compelling. The allocation of resources is a political and economic argument, not scientific one. I am mystified by those who appear to believe that, the more expansive the autism spectrum is, the more people will have access to services. The opposite might well occur and access decrease for those on the more challenged end of the spectrum. We are not dealing with an infinite steam of resources, and the parents of non-speaking intensely autistic kids well resent their children having to share what services and programs are available with high functioning Aspies like me. If you have sought government assistance recently, either for yourself or for a charity, you know how difficult obtaining such help has become. Our government may spend untold sums on the newest weapons systems, on invading Middle Eastern countries, in baling out Wall Street, but for the poor, the disabled, the unemployed, the uninsured the pie is shrinking quickly. Before we increase the demand, we should be sure that the demand will be answered.
What bothers me most of all is this: the term “autism” is in danger of becoming so amorphous that it will lose all significance. Temple Grandin, the great autistic scientist, writes in her book “As I See It” about three types of autistic minds: the visual thinkers like herself, who can take things apart and put things together; pattern thinkers who are good at math and music; and verbal thinkers such as myself whose skill lies with words.
As a verbal thinker, I want words to mean something. Indeed, I do not feel safe around words that have no definite or discernible meaning. When I hear label “autistic” thrown around to denote various and sundry disorders, I cringe. The autism spectrum may well be wide and varied, but it should nevertheless have a distinct beginning and an end. Autism is not something that can be seen through a microscope or revealed in a sonogram, at least, not yet. Nevertheless, the diagnostic criteria cannot be totally subjective. I understand the motivations which lead well-intentioned persons in the community to say, “The more the merrier” and let us define the spectrum as broadly as possible, but that sentiment neither gives me comfort nor helps me to understand what it means to be autistic.
I have always known that in some fundamental way I am different from other people, and that this difference was not shared by many, but by very few. Not everyone has a “touch of autism.” If that were indeed the case, then the diagnosis would have no significance, and I might as well reclaim my childhood label of “misfit.” At least people were in agreement as to what that word meant.
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