Saturday, September 22, 2007

More on What Institutionalization Does To Autistics

This is not a pleasant subject to write about, but I think someone needs to do it. If I try to search for formal data about it on Google, I find my own prior post on it where I quote Kanner as he notes a very consistent lack of institutionalization in autistic adults who were doing particularly well in their 20s and 30s. I also find a comment by Michelle Dawson (she has obviously already studied what institutionalization can do to autistics), plus a comment on Autism Diva's blog about Alfred N's fate. That's about it.

The more recent outcome studies, for whatever reason, also do not seem to explore the effects of institutionalization on outcome, as far as I'm aware.

The following is from Kanner (1971), a follow-up study on 11 autistic children originally reported by Leo Kanner in 1943.

Richard M., Barbara K., Virginia S., and Charles N. (Cases 3, 5, 6, and 9), who spent most of their lives in institutional care, have all lost their luster early after their admission. Originally fighting for their aloneness and basking in the contentment that it gave them, originally alert to unwelcome changes and, in their own way, struggling for the status quo, originally astounding the observer with their phenomenal feats of memory, they yielded readily to the uninterrupted self-isolation and soon settled down in a life not too remote from a nirvana-like existence. If at all responsive to psychological testing, their IQ's dropped down to figures usually referred to as low-grade moron or imbecile.

The four autistics mentioned in the preceeding paragraph were placed in institutions from an early age.

Kanner lost track of two cases, Paul A. (Case 4) and Alfred N. (Case 8). However, it's notable that Alfred, a child with an IQ of 140, was placed in many different schools and hospitals. At one point he was given Thorazine.

Two other cases, Donald T. (Case 1) and Frederick W. (Case 2), were considered success stories by Kanner. They were never placed in institutions.

John F. (Case 10) died suddenly at the age of 29.

The remaining 2 cases were not considered success stories by Kanner. But they did not do poorly. Herbert B. (Case 7) was placed in a home only for a short period of time. He was still mute in adulthood, but he ended up in a farm where he was able to help out with various chores. Elaine C. (Case 11) was apparently first institutionalized in 1950 at the age of 18. As of 1970, she was still at Hudson River State Hospital and was reported to be independent, neat and clean.

Kanner comments on the institutionalization factor as follows.

One cannot help but gain the impression that State Hospital admission was tantamount to a life sentence, with evanescence of the astounding facts of rote memory, abandonment of the earlier pathological yet active struggle for the maintenance of sameness, and loss of the interest in objects added to the basically poor relation to people; in other words, a total retreat to near-nothingness...

The question arises whether these children might have fared better in a different setting or whether Donald and Frederick, the able bank teller and the duplicating machine operator, would have shared the dismal fate of Richard and Charles in a State Hospital environment. Even though an affirmative answer would most likely be correct, one cannot get away from wondering whether another element, not as yet determinable, may have an influence on the future of autistic children...

Maybe a life sentence is too dismal. It's not impossible for autistics to manage to come out of institutions and resume their lives. But this is probably extremely rare.

Not institutionalizing autistic children when they are young doesn't guarantee independence and employment, of course. But it appears to be practically a requirement if that sort of outcome is to be attained. Note that Kanner reached this conclusion after analyzing 96 cases, not just the 11 mentioned.

Now, why is it that strong warnings against institutionalization are not issued by doctors and other professionals? Why is it that instead some autism associations give the impression that institutionalization is indicated unless there's treatment?

5 comments:

  1. I can't help but wonder if this is an arguement for integration also. Would children in intregrated settings fare better than children in a segregated facility?

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  2. In An alternative view of outcome in autism the authors note something along those lines in regards to autistics who did well...

    What seemed to be an important predictor of success was that whenever individuals and their families were confronted with challenges, they sought and successfully accessed various supports. For example, when families were told to "place" their young children, their parents sought and created alternatives. Some of the families were the first to push for integration in school and used their natural community and family ties to include and support their child.

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  3. Institutionalization isn't good for anybody. That's why the Olmstead Act was passed. You won't find studies on the outcome of institutionalization on kids and adults with mental illness either even though experts will tell you it fosters dependency and makes it very difficult for people to live on their own if they spend much time in an institution, especially as children.

    I would speculate that the lack of outcome studies on institutionalization has to do with the politics of the situation. If studies show that institutionalization is bad for children (and adults), states who rely heavily on it could be held legally responsible for not doing more to get folks services in the community and groups like NAMI and TAC who have a lot of influence would get upset.

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  4. Could be, Alison. But I would think than in countries other than the US they could've done studies like that. My impression is that in the medical model the only environmental factor determining outcome that researchers are interested in is treatment.

    Fortunately, institutionalization has been falling out of favor, and no doubt outcomes will improve. Mark my words, though; the credit will be given to treatment and early diagnosis.

    After analyzing Kanner's papers, I'm convinced that the poor outcomes autism is generally accepted to have are artificially skewed in a signficant way by institutionalization. It's a vicious cycle really. Poor outcomes feed medical views of autism, which in turn encourage institutionalization.

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  5. I know this is an old thread. I was placed in residential treatment when I was 17. Voluntarily. I am not autistic, but was dealing with severe depression and anxiety (the cause of the depression was caught a month into treatment and got better). I was only there 18 months, but I can say, honestly, that although it wasn't an unpleasant experience I do think it has made my adult life very hard. I wish there was more of an emphasis, especially with children, on short focused stays followed by intensive community treatment (even if it costs as much as residential) or treatment homes (foster, group, or other similar very small community integrated environments)

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