Our society is confronting many serious, chronic medical issues, including AIDS, diabetes, obesity, cancer, Alzheimer's, MS, heart disease, and autism. What do all those conditions have in common? Each one is something you live with for a long period of time—in some cases, all your life. Furthermore, each one has one or more strong advocacy organizations that speak for people affected by the condition.
What makes autism unique?
Autism is the one medical condition I can think of where no one can agree on the legitimacy of any of its so-called advocacy groups. Why is that, and what does it mean? The recent Autism Speaks video debacle and the continuing controversy over neurodiversity and a "cure" makes me think this is something worth talking about.
The problem starts with autism itself, and how people see it. Unlike cancer and most other medical issues in the news, autism is a stable neurological difference. It's not a progressive disease. At the same time, autism's impact on people varies tremendously. Some people are totally disabled which others are merely eccentric. It's no surprise that the individuals at the two extremes would have totally opposite views of their condition.
The "High Functioning" autistic group says, "We don't need to be cured. We just need tolerance and understanding."
The Highly Impaired group says, "Enough with the understanding! We need some cures, fast!"
Parents of affected kids say, "I want my kid to have a good life, whatever that means or takes."
To a large extent, those points of view are mutually exclusive. HF people tend to see the HI desire for a cure as an indictment of their very being. "Get rid of autistic disability" morphs into "get rid of people like me," in their minds. From the HI perspective, the desire for tolerance and the HF statement that, "we are fine the way we are," seems to be a callous dismissal of their very real disabilities.
Unfortunately, each person who's touched by autism thinks his autism experience is representative of everyone else's. And why wouldn't he? That's how it is with most other medical conditions. Within reason, my broken leg is like yours. So's my flu, or even my bypass operation, should I ever have one. Some of us have complications and we do better or worse, but there is indeed a common shared experience.
Autism, by virtue of its diversity, is totally different. Unless he makes a point to study nonverbal autistic life, a high functioning Aspergian will have no concept of life at the other end of the spectrum. And of course the opposite is true too. This misunderstanding is compounded by autism itself, as one characteristic of our condition is an inability to put oneself in another person's shoes. So conflict is bound to arise.
And then there's the conflict with the parents. They say, "My kid has this terrible condition," and high functioning adults see that as an indictment of themselves. After all, they live with the so-called "terrible condition" every day.
What can we do to resolve this strife? I have a fairly simple solution.
First, stop talking about a "cure for autism," and "getting rid of autism."
Second, talk about finding fixes for specific components of autistic disability, like speech impairment.
We should all be able to agree that the ability to talk is a good human trait. So is the ability to eat whatever you want, without getting sick. Therefore, we should be able to agree that therapies that allow autistic people who couldn't do those things in the past to do them in the future are good.
It seems to me that one change in focus could go a long way to resolve the controversy.
The other thing we all need is some tolerance for differing views. For example, I may see some benefits and some disabilities to my own high functioning autism. There are other people who see zero benefit and much handicap to autism in themselves. Both of us deserve the right to hold our differing opinions and live our lives in peace. There is no reason that can't happen, though you'd never know it from reading many of today's blogs and articles on the topic.
I certainly recognize the solution is more than my simple two steps. There are still some major ethical questions remaining. For example, who should decide if a treatment or therapy should be given to a person who can't advocate for himself? Those are the issues our advocacy groups should tackle together, rather than fighting with each other.
There are also some emotionally charged controversies like the vaccine question, which can only be solved by the advance of science. Of course, both sides will say, "The question is solved, my way!" But the lack of consensus suggests it's far from resolution. That said, it does not have to tear the community apart the way it does today.
When you count the autistic population, plus out families, teachers, and caregivers, there are many millions of people affected by autism in the United States alone. Most of us are just individuals, with little ability to advocate for ourselves regionally or nationally or in some cases, even locally. We need strong advocacy organizations to play this role; organizations we can embrace and get behind.
Can today's autism advocacy groups embrace this concept? Time will tell.
Until they do, I am sorry to say, none of them speak for me. I know I am not alone in that somewhat cynical view. And that's a sorry state of affairs for advocacy groups who are supposed to look out for the interests of people on the spectrum.