What, exactly, is self-advocacy and what is its place in the autism community?
Autism is a communication disorder, with a broad range of affect. Some people's autism makes them eccentric and geeky. Other people can't speak at all, as a result of more severe autistic disability.
Therefore, in the world of autism, some of the population is capable of what some call self-advocacy while another part is not. It should come as no surprise that those groups would have very different wants and needs. That disunity of need and purpose is a fundamental issue we must address.
At its heart, self-advocacy is nothing more than speaking up to get what you want. Everyone who communicates does this, all the time. We self-advocate when we ask for different courses in college. We self advocate when we ask for a chair with a lumbar support at work. Can you recall the last time someone looked at you and said, Speak up! That's a request for self-advocacy. Learning to communicate effectively enough to get your needs met is an essential part of growing up and making one's way in the world.
If you're autistic, your needs are mostly the same as anyone else (food, shelter, security) but you may have some unique twists. For example, you may have allergies, or be sensitive to the flicker of fluorescent lights, or be unable to wear wool clothes because the feel of the fibers drives you crazy.
You may believe your own communication problems will be reduced if the people around you are willing to change their style of engagement to accommodate you, or you may ask that they excuse some of your expressions, which might otherwise be offensive or unacceptable.
Those are all examples of what we call self-advocacy, because the speaker is asking for what he thinks he needs to be successful. I don't have any issue with anyone who does that. Everyone should seek what they need.
We all engage in this behavior. Knowing that, I'm not sure why it's singled out in autistic people by using the term self-advocacy. That makes an ordinary behavior sound like something unique to certain autistic folks when in fact it's what anyone who wants to get ahead does. Speaking up to get your needs met is a more accurate and less clinical term for 99% of what we call self-advocacy.
I believe we unwittingly do our more disabled autistic population a disservice by aggrandizing this behavior by calling it self-advocacy. The clinical term makes it sound like something unique, which it isn't. Non-autistic people see the accommodations the autistic self-advocates ask for, and jump to the conclusion that those accommodations must be typical of what's needed for all autistic people.
Unfortunately, nothing could be farther from the truth.
When a teenager with Asperger's says, "I don't want to be changed. I want people to accept me as I am," he is expressing a sentiment shared by every other human. The difference is, the teen with Asperger's may have Asperger-driven behavioral issues which make that dream much harder for him to attain.
When that same person says, "I want help learning to get along with people," the lay person hears that and thinks that's what all autistic people need - help making friends. If only it were that easy.
To make a broad generalization, one might say the articulate and verbal autistic population wants help with social problems, finding and keeping jobs, and support fitting into the community. The non-verbal or partly verbal autistic population is in a very different fix. None of the aforementioned accommodations are of much value at all to them. They need help mastering the basic skills of life and therapy to help them communicate on a much more fundamental level. Many people with more severe autism also have other significant medical challenges. Their needs are totally different.
Yet they cannot self-advocate. Their communication challenges are too big. At the same time, the public is constantly hearing from a verbal autistic population whose wants and needs are totally different, and they are increasingly strident in their demands.
So what should we do? I would never suggest a verbal autistic person keep quiet simply because his needs differ from another autistic person who can't talk at all. Yet I recognize the problems that speaking out may cause for another part of our community.
I have been guilty of this myself. In my earlier writing, I've said, "I don't need a cure. I just need understanding." I still believe that's true for me, but I now recognize the tremendous breadth of the autism spectrum. As a result, I am now sensitive to and accepting of the views of others who do want to be "cured," however that may be defined. My views about the "cure" may differ from yours but I recognize, accept and respect differing points of view, as long as they are not harmful or destructive to others.
How might we address this problem?
First of all, I think we might consider how we label our activities. When we call an activity "advocacy" we should understand that many people interpret that word to mean "speaking for others." Even when we call it "self-advocacy," many people will still interpret the ensuing words as bring applicable to a larger group.
Therefore, if we are truly speaking up for ourselves, and not a group, we should just say that. Saying, "I need certain accommodations to be successful in this job," is both reasonable and holds no implications for what some other person might need in that job. Speaking up for ourselves is not speaking for others.
In contrast, "self-advocating" for workplace accommodations has the ring of labor organization or union activity to me, and that's a very different sack of fish.
When we do advocate - speaking for the benefit of a larger group - we owe it to our less vocal community members to make the lay public aware of the breadth and depth of their needs as well as our own. When we "advocate" for autistic needs, we should always be clear about the overall range of needs and services our population requires.
There is a huge difference between a job skills coaching group and an ABA behavior program, but both are vital to their respective constituencies. When we speak to audiences, whether in person or through the media, we should be particularly sensitive to this issue.
John Elder Robison is the New York Times bestselling author of Look Me in the Eye, my life with Asperger's and his newest book, Be Different - adventures of a free-range Aspergian