John Elder Robison
John Elder Robison, the autistic person on the science board of Autism Speaks and one of three autistic men on the Interagency Autism Coordinating Committee, begins his big picture consideration of where the autism community is and where it needs to go in a familiar place-- anger:
What have we done for our community? Angrydirect that question at the IACC, the CDC, NIH and Speaks every day. They say we’ve spent hundreds of millions in research, and talked about all our great accomplishments in research, yet the lives of the autistic people around them are not one bit better. How come?
I’m beginning my seventh year as an autism advocate – whatever that means – and one thing that’s clear is that the dissatisfaction expressed by members of our community is just getting louder. The inescapable conclusion is that the organizations that purport to be here to help are not delivering whatever it is we want or need.
I want to respond to John Elder's piece in some depth soon, but first I want you to read his arguments without my comments on them, because what he has to say is smart and important. There's a lot I agree with and a lot I disagree with, even in his final summary and call to action:
1 – We have developed a number of promising therapies – some medical, some behavioral, some environmental – that seem to offer meaningful help to certain autistic people.
2 – We see the promise of new technologies like tablet computing/apps but we’ve left most development in the hands of private companies, which leaves the resultant products unaffordable as things stand today.
3 – History shows that some of the greatest discoveries come from basic research and I believe we must continue in that direction. At the same time, we can’t overlook the needs of people today.
4 – The reason most new therapies are not covered by insurance is that there is not a strong body of evidence that they work, nor are there standards for how they will be delivered. Consequently, insurers wriggle off the hook saying they don’t know what they’re paying for, or if it will work. That’s why there’s such a critical need to fund studies that build evidence, and develop standards for delivery.
5 – Changing the way our education, legal, and social systems accept, engage, and help autistic people is going to be a massive and expensive effort; one that is just now beginning. It’s even more critical as we begin to understand the true size of the autism community (including the large numbers of previously undiagnosed or misdiagnosed adults.)
Please read it and think about it.
Then let's talk.
There's been a lot of excitement in the press about a new study that tells us something we already knew: some autistic people stop being noticeably disabled if they got the right education and support.
It’s not a huge surprise that autistic people with average or above-average cognitive abilities might be able to intellectualize social rules and algorithms and put them convincingly into practice. Does that ability mean that they aren’t really autistic? The real crux to answering that is this: Do we view autism only as a clinical diagnosis based solely on behavior and outward function, or do we talk about it as a neurobiological construct and identification, with an understanding of the context of the hidden disability and the hard work that those outward behaviors require?
Many conditions that we measure either directly with lab tests or behaviorally can lie under a mask of apparent normalcy or typicality. A woman with diabetes who maintains her blood sugar at a healthy level through diet and medication still has diabetes. A person with obsessive-compulsive disorder who fights successfully every second of every day against caving to obsession or compulsion still has the disorder. Anyone who has ever put on a public face when all they wanted to do was stay in bed should understand something about doing the internal hard work of compensating for a disability without showing outward manifestations of it.
Psychologists say we learn adaptive strategies, and some of them work very well indeed for those of us with the cognitive resources to make full use of them. I’ve certainly seen how they helped in my own life. I was disabled as a child, but no one would call me disabled today. I’m independent and function, as are many autistic people.
But that’s the thing . . . I’m still autistic.
Aut and Proud
Basketball sensation Jason McElwain finished a marathon in Rochester, New York, and has qualified for the Boston Marathon.
Miss Montana, Alexis Wineman, talked about her autism at the Childwise Institute's conference:
“By the time graduation rolled around, I was proud of who I was, and I was confident that I had overcome this vicious circle in which I had been sinking,” she said. “I graduated high school, which was something I previously felt was impossible.”
She said she surprised everybody when the decided to enter the Miss Montana program. She told people she wanted to prove to others what she could do; but really, she said, she wanted to prove it to herself.
Now, she has been accepted to the University of Montana, and is deferring enrollment for a year and still looking at her options. She’s slated to be on a national stage — the Miss America pageant — in Las Vegas in January.
“Being on the (autism) spectrum is not a death sentence, but a life adventure, and one that I realize has been given to me for a reason,” she said.
Renzo Burga has a 4.0 GPA at Broward college.
Mary and Jack Robison are running their own business making parts and add-ons for 3D printers. Jack says:
3D printing is in the process of revolutionizing traditional methods of making things. I think small printers like the RepRap will ultimately leave the world of hackers and become consumer electronics, much like computers did 30 years ago. Individuals and companies will be able to directly manufacture the things they need, for significantly less cost than the things are currently available for. My original plan to use the printer to make parts for my quadrocopter is a small-scale example of this, but the potential is limitless.
It'll have significant effects on education too. Students will be able to make whatever they can draw, perhaps giving a new generation of engineers much more hands-on experience at a very young age.
Jack's father John Elder is working with them and continues to speak about autism, telling his audience that the world needs us.
New IACC member John Elder Robsion writes about an issue he brought up at yesterday's meeting: in many cases ABA is the only therapy that insurance companies will pay for, but it may not be the best option for every child:
I’ve written about new therapies on this blog, and indeed many show great promise. Their effectiveness has been shown in many studies, yet they are not widely available, and rarely covered by insurance. Why? Because there is no way for an insurer to know that the intervention being delivered in North Dakota is the one designed and vetted at UCLA (for example).University research centers develop these therapies and even do training to propagate them in the field. Important as those efforts are, they cannot roll out a new intervention on a national scale to augment ABA. It’s just not realistic for any single group to undertake that except over a period of decades, which we do not have.So what do we do about this?
I think we need Federal action that mandates insurance coverage for a much wider array of behavioral intervention. Valuable as ABA is, is it not a path that works for every kid, and frankly, it is “old news.” We need to get our insurers covering the deployment of new therapies that will help a broader range of kids.
One of the findings from IMFAR that caught the attention of John Elder Robison was that autistic people seem to be more likely than the general population to identify as LGBT.
These are possibilities for the difference that John Elder mentions from the presentation:
1 – We might have more “masculinized brains,” whatever that means. I quote those words from one of the summaries. I know Simon Baron Cohen has advanced the idea before but I’d not heard it in the context of sexual identity.2 – Since our ability to read other people are limited, we may be freer to think independently. So freed we might make choices that NTs would be inhibited from making.3- Our sexual identify might be inherently more flexible for as-yet unknown reasons related to our autistic differences.
4- Our penchant for directness may cause us to be more truthful in surveys of this type; in that case we may report truer percentages while the NT group had many respondents who hid their true feelings. The difference may not be great at all; we just answer differently.
To me, it seems likely that sometimes there is a connection between what happens in the brain that makes someone gay and what happens in the brain that makes someone autistic. Specifically, both autistic people and gay people tend to have differences in the amygdala, a part of the brain which is believed to help control emotional processing and memory. The amygdalae of gay people tend to be more similar to those of the opposite gender. The amygdalae of autistic males tend to be unusually large.
I do know lots of gay autistic people, but I am one, so that's not surprising.