Yesterday I was listening to “This American Life” on NPR, and they had a segment called “Hit me with your best shot”. A family spoke about their decision to put their child, who has autism and is rather aggressive in his interactions, into an institution. What made listening to this particularly poignant for me was the fact that I was on my way to visit my friend who has autism and who has lived in an institution since he was a youngster.
I’ve always been anti-institution on principle- even though I’ve worked in one for 19 years. To me, institutions are not a good place for people to live. At the same time, I struggle with this belief, because, sadly, for some of my clients, living in an institution has been better for them than living with their families. Worse, a lot of the folks we send out to the community to live in group homes have ended up coming back, often not in great medical shape.
The other thing I’ve started to think about is that there are a lot of people living in residential facilities who seem to function better when there are a number of carers involved. I don’t mean that someone should have a different carer every day. I just mean that people with a lot of needs that aren’t being met (sometimes- maybe a lot of times- because the folks supporting them can’t always figure out what those needs are) tend to act in unusual ways. Dealing with unusual is fine if you are a carer and you have a lot of other people to rely on (not that staff in institutions get all the emotional support they need to do their jobs, but at least at some point their shift comes to an end and they can go home). If you’re a parent (or parents) then it’s pretty much you. All the time. And it’s scary when your kid is freaking out and you don’t know what to do.
I’ve had that experience with my friend who I visit at the institution. He and I often take drives together. It’s something we both enjoy. Sometimes we get out and take a walk or go to the library or buy vegetables at a farm stand. On occasion, when he gets out of the car he won’t get back in. At all. When I’m 15 or 20 miles away from his home and his staff that’s a terrifying experience. He’s very strong when he’s decided not to do something. He’s not mean about it- justextremely resistant.
Yesterday, as I was listening to this family’s experiences, I wondered if there’s something to be said for out-of-home placement simply because the people doing the care-taking are not so emotionally involved. Autistic people are so sensitive to the feelings of people around them, and I wonder if that sensitivity makes it harder to deal with parents who, rightfully, have a huge emotional investment in their child.
Interestingly, also yesterday, someone in an email group which I belong to sent along a link to this article: “Treating those with autism like [competent and worthy human beings] shouldn’t be a radical notion” The article addresses, among other things, the issue of movement differences and challenges experienced by many people who are on the autism spectrum and how, often, the inability to organize one’s actions have lead to incorrect assumptions about intelligence and intention. Thanks to the use of alternative means of communication, there are people who are now able to convey their frustration at being unable to control their bodies and at being misunderstood.
Another very important topic which is touched on in the article, probably more gently than it needs to be, is the abuse of people who have disabilities. Abuse has a profound effect on everyone regardless of whether the person has a disability or not. Sadly, I can’t say that abuse happens any less when people live with their families than it does in an institution.
So I’m left without any answers (as often seems to be the case) and a lot of thoughts and uncertainties. I did talk with my friend from the institution about the family and their final decision to institutionalize their son. My friend doesn’t use any speech at all- in fact, he’s generally silent. He does have a special sound that he makes which sounds like a cross between clearing his throat and getting his nose stopped up, and as I asked him what he thought (because I always ask him what he thinks) he responded with a lot of his sounds.