Then, last summer, when Liam was 16, we got a taste of what the future might hold. My husband finished a Ph.D. program and took his only job offer—a visiting professorship that was 2,000 miles away from our home in Wisconsin. We moved to Oregon, leaving most of Liam’s therapeutic equipment behind because there wasn’t room for it in our tiny new apartment. We also left Liam’s familiar routines, his beloved therapists, and a state program that paid for everything from respite to toys. I tried to secure therapies in Oregon, but either no one was enrolling 17-year-olds or if they were, the wait lists were 30+ children deep. The state seemed to be devoting its resources to early intervention (EI) for younger kids. It would take six months to get Liam registered in its disability program, which provided only the most basic services. And for the first time in years, as our student loans came due and I searched for a new job, we barely had enough for food, much less for autism therapies.
The future was here, and I was utterly unprepared.
Our days are now rather monotonous: My husband goes to work and I stay home with Liam and his 5-year-old brother, Eliot. I provide as much enrichment as I can. We listen to books, play at parks, go to the library, grocery-shop, and cook—and I attempt to do some homeschooling with both boys. However, Liam’s boredom, his lack of routine and support staff, and his communication frustrations have brought on violent meltdowns and tremendous sleep problems. We’ve got it tough right now, and we’re not alone. We’re getting a sense of what happens to many families as their children age out of EI or school programs.
According to the most recent estimates from the Centers for Disease Control and Prevention, 1 in 68 kids have been identified with autism spectrum disorder. Those children (including Liam) will be adults by 2040, and as I consider such statistics I try to imagine what their future will look like. Will Liam have a job or will he be unemployed, like so many adults with autism are today? Will he live at home? Will he be able to express himself, or will he still struggle to make his voice heard and lash out in frustration? Will my husband and I be alive to help him or will his younger brother be responsible for caring for him? Will we have somehow managed to save enough money to give Liam security in the future?
I don’t know the answers to these questions, but I do know that research in Pediatrics says that 50,000 kids with autism will turn 18 each year. By 2034, there will be nearly 1 million young adults with autism who no longer qualify for school services. That’s a lot of young adults, and we must start preparing and building now in order to give them the future they deserve.
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