While I’m in the land of hot takes over on Facebook, let me dust off this space to drop another one. A lot of people are attributing the rise in numbers of people with profound, or severe, autism, to the fact that that particular population used to be hidden away—institutionalized—and that may be at least partially true. And to that I say, we need more institutions.
Now before everyone freaks the fuck out I don’t mean kids strapped to radiators or whatever other Willowbrook horrors come to mind when we say the word “institution.” But I will tell you that as my kids approaches adulthood at an alarming clip, he is going to need a place to live. And from where I sit right now, there is no place for him to go.
I will also tell you that he currently lives in an institution. Technically, a psychiatric residential treatment facility. It is a school, and a dorm and a ranch with chickens and goats, and a garden and swimming pool. But, you might ask, is he being held there against his will? I couldn’t tell you that and neither could he. He’s seems happy enough most of the time.
But here’s the rub. This institution, this PRTF if it’s easier to swallow, is far, far away from where I live, and where Moe grew up. I’m in California and he’s in Kansas and we see him once a week on a Zoom call. Why is he so far away? Because when it came time where we couldn’t keep Moe safe at home anymore, and couldn’t keep ourselves safe anymore, and someone was going to end up seriously hurt or seriously dead, we had to find him a place to go and that happened to be in Kansas.
Now if you know my family and our story, you know that that is the short version of what happened. What really happened is the state of California shut down all the child development centers, aka institutions, where people like Moe might have gone. I don’t really know much about them but let’s assume they weren’t great. So now we have group homes and after a year of looking for one and being rejected a few times, we found a group home that would take Moe. And it was good, but then that group home closed, and then his next group home closed and then he came home for a bit and then he went to a lovely place in Ohio that kicked him out because they couldn’t manage his behaviors and then he moved to Kansas.
Let me pause there for a moment in case you’re thinking to yourself “it’s not that you couldn’t keep him home, you just didn’t want to.” An entire well-respected facility dedicated to caring for people with autism, one with round the clock staff, kicked him out because they couldn’t manage his behaviors. But we were somehow expected to.
So now Moe is in Kansas and maybe he’ll be able to stay there a bit longer but it won’t be forever. And I can tell you right now that there are very few places that can care for young adults like him, and they are all full, with very long waiting lists. And none of them are near where I live, despite living in the state with the largest population and highest GDP. And if you believe the number of people with autism is growing even a little bit, even at the rate that the overall population is growing, we are not prepared. This is a housing crisis that no one talks about because it means admitting that we need institutions (communal settings, communities, campuses) because we can’t solve this 4 to 6 people at a time in group homes, especially in an expensive state like California.
So yeah, bring back institutions. Make them kind, and bright, and full of life and activity and caring well paid staff. But we need them. I really don’t see any other way.
