Cammie McGovern - Hard Landings: Looking Into the Future for a Child with Autism

Joseph Heller coined the term catch-22 to describe a military conundrum: a terrified fighter pilot seeking a discharge from armed services on grounds of insanity is declared sane enough to recognize the danger he faces and therefore must keep fighting. The phrase has come to symbolize the absurd vicissitudes of institutional logic and is extraordinarily apt for the generation of young adults with intellectual and developmental disabilities (IDD) coming of age in America today. For Heller, the number twenty-two was arbitrary. For these young adults, it isnt. Twenty-two is the age when theyll leave their school system and lose access to every educational and vocational support theyve had since they were three years old. In many states, their twenty-second birthday will mark the last day they have anywhere to go. For nineteen years, theyve been part of a system designed primarily around the philosophy of inclusion. Theyve participated in classes and school choruses; theyve gone on field trips; theyve learned how to comport themselves in a community thatthey will soon discoverhas no place for them. The catch is this: theyve trained for a life they cant have. Theyve learned skills for jobs that dont exist or theyll never get. Theyve practiced independent living but theyll never live alone. Parents describe this moment as falling off a cliff without even realizing the worst parttheir kids arent really falling because they arent going anywhere. Theyre sitting in their parents house, waiting indefinitely.

Every parent of an autistic child can tell you something about making lists. In the early days after Ethans diagnosis at the age of three, I made them compulsively: words he understands, words he uses regularly (only a handful at that point), songs he can sing at least part of. I also had lists of goals, composed in bursts of optimism, for what hed be doing soon: six months from now he will count to twenty, follow two-step directions, tell a stranger his name. At the time, I believed these lists kept us focused, with our eyes on the prize that I made our number one parent goal on Ethans first preschool IEP (individualized education plan): To enter kindergarten without an autism diagnosis. That was my thinking during our early years in the autism trenches, before wed learned how complicated and knotty the battles could get.

Ethan was diagnosed just after his third birthday by a gruff doctor with a thick accent we had a hard time understanding. At the start of our appointment, wed tried to put his developmental delays in the context of a larger picture of medical issues: Hed always been a colicky infant, so prone to sinus and ear infections he seemed to wean straight from the breast onto amoxicillin. Hed had food allergies, terrible eczema, and for the last year and a half, diarrhea so severe wed never bothered to start potty training.

Yes, this is autism, said the doctor, who seemed to be missing a few social skills himself. The first thing you must do is lower your expectations. Dont assume hell get a job. Hope that he can do a few things independentlyget dressed, feed himself, things like that.

I was outraged, of course. Ethan was three years old, and this doctor was already outlining his limited future? My fury dissipated after I did some research and discovered that over half the children diagnosed with autism had experienced chronic ear infections and gastrointestinal issues. The more I read, the more this diagnosis seemed less like a tragic pronouncement on Ethans future than a thrilling explanation for the constellation of GI problems hed had all his life. Here at last was a connection, and with it a ray of hope: there were diets to try, therapies to get started on, children like him who were improving physically and catching up on missed developmental milestones.