Sunday, March 12, 2017

When They Grow Up

When They Grow Up

When most people think about autism, they think about children. For parents, it’s all about the right school, the right program, the right therapy. Then there’s diet and possibly pharmaceuticals. And if you do all that right, you think things will turn out okay. You don’t see that much about adults with autism, and when you do, they are often portrayed like Spencer Reid on Criminal Minds, odd but brilliant and totally functional. Would that things always turned out that way.

The truth is, that barring co-morbidities, persons with autism live a normal lifespan. That means that they will be children for the first eighteen years of it and adults for the next sixty or so. They may get to be in school into their twenties, but after that, it’s a whole new ball game. Many of the high functioning can make it through college and/or get decent jobs. Companies like Microsoft are reaching out to employ the more talented among them. That’s great!

But how about the ones who aren’t high functioning, the ones who smear their feces on walls, who head bang, who would spend their days with their hands down their pants? Do you see them on TV or in the movies? Rarely if ever. They may have savant skills like their luckier brethren, or they may not. In either case, their behaviors, despite whatever interventions have been tried, prevent them from capitalizing on them. Autism is a spectrum. Those are the two ends. There are all the ones in the middle too, each with unique sets of needs. So what is the best care for all those adults?

There are as many answers as there are individuals, and almost none of them are easy. There are the lucky ones on the high functioning end who grow up to pursue careers, launch, and fend for themselves with minimal or no supports. Then there are the ones who get some kind of a job and with periodic interventions from parents, family, and or services, make out reasonably well. But then there are all the others, who may or may not be able to hold a job, but require twenty-four seven supervision.

There are group homes, in home supports, and work programs. Some are readily available, some have huge waiting lists. All require careful consideration, and many, a great deal of planning. Choosing the right options to fit the life of a son or daughter may be a lifelong task, both frustrating and draining, but best faced with clear eyes rather than rose-colored glasses. While even with a child of normal needs, one may never cease to be a parent, with an adult with autism, one may never cease to be a guardian. It may be a job from which you can never retire, but the most important one you’ll ever hold.