As the parent of a so-called "low-functioning" autistic boy, every day can be an adventure. My boy, at 11 years old, is still largely non-verbal, and although we have been making progress, is still in pull-ups.
My goal for him is and always has been that he have the maximum level of independence possible for him. This is a frog-in-the-water process; not much dramatic progress, but slow and steady incremental improvement. I can see the horizon; he will need help well into adulthood.
Unfortunately, once my son hits 21, the likelihood is that help will be scarce. More below the fold.
This is an article just published in the news blog for the local PBS station.
My son goes to a special-needs school right now, after the autism support class he attended at our local public school proved insufficiently able to help him to continue to make progress. The school costs about $35,000/year for my son to attend. Under IDEA mandates, the school district and the state split the cost of the school. Evan has been making progress since he got there, often slowly, sometimes quickly. Under IDEA mandates, he will be eligible to remain in the school for roughly the next 10 years.
Sounds good. So why am I worried? Simple. Autistics who are entering adulthood (as defined by IDEA legislation, that's 21 years old), are the fastest growing demographic among the autistic population. A report published by the PA Office of Welfare in October of 2009, assuming new diagnoses at the current rate, the adult autistic population in Pennsylvania will rise from 3,825 individuals in 2010 to 19,587 by 2020. Note: the report also concludes that the current autistic population in PA is being dramatically undercounted, so the actual 2020 total is likely to be higher. Whatever the case, we are looking at a figure 5 times higher in 2020 than in 2010. Or, on a percentage basis, 412%.
In Pennsylvania, the autism support budget is holding steady, but obviously won't keep pace with the growth in cases. And support for autistic adults is going to be woefully short of the need.
So where does that leave me? Playing the lottery. Because, come 21 years old, me and my boy are going to be left to fend by ourselves, and it's going to be brutal.