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Jenee Woodard

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Parenting Adults With Autism

Posted: 03/ 7/2012 12:22 pm

There are more and more people like me in the world. My son's autism was diagnosed when he was 5, after having been termed "pre-primary impaired" for 3 years. As he developed and grew, it became obvious that his autism was quite severe. At age 20, he is not really conversationally verbal. He hoots, hums, jumps, skips, and paces through his day. He has low tolerance for errors in building mechanics, weather forecasts, faulty or illogical wiring. He is immediately drawn to the thermostat in any room we enter, which he inspects thoroughly, no matter what the proximity of other people or the location of the thermostat. He likes routers. And telephone/computer networks. A lot.

At the same time, our family, the school systems in town, and many, many people have spent the past 15 years making decisions to teach him to complete tasks as directed. With an occasional slip, he will do this at a fairly high level within computer-related situations. He is prompt and courteous in the workplace. He will do high level repetitive work that either people cannot be trained to do because of their inability to work at this level, or consider repetitive because of their ability to work at levels where more decisions are necessary. He fills an important niche in contemporary IT situations. And people are afraid to hire him.

I understand. Budgets are low. Corporate structures have job descriptions that include things that disqualify him for certain jobs. He is large and he doesn't really talk to people. He is unpredictable at times. Working with him can be uncomfortable and annoying at times. He scares people. He can be seen as a liability. People are afraid of lawsuits. People are afraid of precedents, so if they hire him, they would have to hire the next autistic person, or they tried one autistic person once and it didn't work out. All of these things are true.

We raised our son -- our community raised our son -- not to think that he is "disabled," but to be integrated into the communities around him. This took a lot of work on my son's part and on the part of many, many people who spent much time and energy teaching him to perform tasks and be part of communities in a mutual way. We taught him (and he learned) that he needs to work, as well as he can, at the expectations of those who supervise him, no matter what he "wants" to do during those hours. He can do this and he does this.

And I am so completely frustrated right now with structures that "protect" institutions and corporations, and even individuals instead of giving adults with autism the opportunity to figure out work situations that will be beneficial for them, and for these institutions and corporations. I understand. Completely. And if it doesn't work out for everyone involved, it will not work out for my son. But it seems that with all of the talk of making autistic people part of "our" society, this last step -- integrating them into mainstream workplaces in ways that will work for everyone involved -- is proving very, very difficult.

Don't get me wrong. I don't expect that exceptions be made for him in order to give him special "privileges" that make him "disabled" in the eyes of the society. I don't want him on disability. I don't want him to think of himself as "disabled." But corporations and institutions are largely set up, like the rest of the world, for the convenience of those corporations and institutions and the "normal" people who have worked through "normal" channels to get "normal" jobs as described. And I can't help but think of it as discrimination of the kind that is opposed by these very same people on almost every level but this one. With just a bit of tweaking, my son, and growing numbers like him, can truly be beneficial to our society in ways people have not even begun to consider. And the "trick" for me is finding someone to give them a chance.

For me, this means working with people I'd rather not work with sometimes. I'd rather get an advocacy group, come in with guns blazing and force them to do what seems like the obvious thing to me. But this doesn't work anymore at this stage than it worked, in the long run, during his education. Instead, it continues to take education -- not only of my son, but also of those with whom he potentially works. And it takes patience that I don't have every day.

I would love to hear honest discussion about this -- beyond shouting back and forth. How do we get beyond a stalemate that is costing our society in many, many ways? These folks are out there and they are coming of age. How do we integrate them into our society in a way that is beneficial for everyone, taking into consideration not only the needs of these persons with autism, but also the needs and limitations of corporations and institutions? What do you think?