Outcomes for autistic people

3 Oct

If I had a penny for everytime so know-nothing mercury zealot told me that by not chelating my autistic child (or HBOT/Lupron/Coconut kefir/Foot detox/clay bath/whatever) I was condemning xyr to a miserable life I could retire early.

My response has always been the same – ‘you’re full of what makes the grass grow green’.

I’m of the opinion that what makes the biggest difference to an autistic child’s educational prospects and hence their adult lives is how you teach them both formally (speech therapy etc) and informally (to be self-confident, to be told off when they are being naughty, to not feel that their stimmy behaviours are bad etc). So it was a pleasant surprise to come across this news article today.

She interviewed 41 adults, spending eight hours with the now 22- to 46-year-olds and their parents or spouses, assessing whether they would still be considered autistic, since the standard has changed. She tested their IQs and evaluated their quality of life.

McMahon and Farley were surprised to find half were doing better than what parents and teachers thought was possible. They had full- or part-time jobs. A few are married and have children. They have friends or acquaintances. One man is no longer considered autistic, having taught himself how to interact by watching movies and reading books.

I know what you’re thinking – these were adults with Aspergers syndrome, right? Well, no. These adults who were diagnosed with _autism_ between twenty to forty years ago (1968 – 1988) when the DSM II and then III would’ve been in effect.

DSM II (1968)
[autism was not mentioned; the word appears only under the following category]

295.8 Schizophrenia, childhood type

This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.

DSM III (1980)

Diagnostic criteria for Infantile Autism

A. Onset before 30 months of age

B. Pervasive lack of responsiveness to other people (autism)

C. Gross deficits in language development

D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.

E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.

F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.

First things first. I severely doubt if _any_ of these adults received _any_ of what would be considered biomedical interventions today. Why? Simply because the idea that a vaccine could cause autism wasn’t around in 1968 – 1986. The youngest would’ve been twelve when Wakefield first started his foolishness.

So what we have, it would seem, is a 50% ‘recovery’ rate (based on what biomeddlers consider recovery) with the only basic interventions being education and time. One of the subjects is interviewed:

Pond says he felt alone and unaccepted growing up. Struggling to understand what was going on in grade school, he would blank out so intensely that adults worried he was having seizures. As a teen, he wished he could take a pill to make his disorder disappear.

Something else that wasn’t around so much in those days was a neurodiversity movement. If there had of been, maybe this poor guy would’ve been able to realise that people who would accept him were there. Its testament to his own strength and will (and the support of his parents no doubt) that he made it to where he is now.

But – there’s always a but – this same follow up found that 50% of these people:

But the other half live in group homes or with parents. They may have jobs but need supervision. They have few to no friends. One works as a janitor two hours a day and returns home to his rituals: watching movies and routinely checking for the mail.

Not ideal, but to be honest, its hardly terrible either. I very much look forward to the study being formally published. In the meantime, this is yet more evidence of the innate strengths autistic people have. Its much deeper and much more pronounced than anyone could ever have thought.

6 Responses to “Outcomes for autistic people”

  1. Ms. Clark October 3, 2008 at 09:03 #

    I just wrote a long comment on the scienceblogs book club blog. One point I made was that autism and even “autism spectrum” has been framed as this thing that condemns your child to a lifetime of hell unless you … sell your kidneys, etc, and spend far more than you can afford to do X and you better do X right now before it’s too late!” Which works out well for whomever is selling “X”. Another point I made was people believe that it’s not possible that any one of the hundred quirky, odd speaking, odd looking, odd acting adults they know could have actually been diagnosable as autistic as children, because if they were diagnosable as autistic as children, then they’d be adult sized tantrumming, non-verbal toddlers now, instead of being the bank clerk or the professor.

    I hope the truth about autism outcomes without “early intensive intervention” gets out. People are now more than willing to jump down a suspected-of-autism infant’s throat with “intensive”, even totally unproven, experimental therapies because it’s bound to be “good for them” and “save them from a lifetime of hell…”. And I mean unproven behavioral “therapies” as much as I mean quack drug and diet therapies.

    The wrong “therapy” can actually do harm, perhaps lasting harm to a baby, but there is next to no recognition of that, anywhere.

  2. Joseph October 3, 2008 at 16:13 #

    What a surprise. Clearly, a major problem in the autism community is ignorance. There’s a huge prevalence of myth-believing.

    Even top-notch researchers are prone to this. Szatmari was just as surprised by the adult outcomes of the autistics he studied.

    Now, if we ever get a published report of the adult outcomes of the Lovaas experimental group, we might have a basis to evaluate the long term value of ABA.

  3. mayfly October 3, 2008 at 18:39 #

    Very nice article. However, all the longitudinal studies I have read do not paint such a rosy picture. Why were these different? What does the 50% represent? The article states she tracked down were what we would call HFA today, that is they had IQ’s over 70. Possibly further honed to people who were capable of being interviewed.

    Even given this, the numbers are better than expected, but it should not be thought that the it is representative of those diagnosed with autism during those times.

  4. Joseph October 3, 2008 at 20:34 #

    However, all the longitudinal studies I have read do not paint such a rosy picture. Why were these different?

    I can hypothesize why. It’s different because it’s newer. There has been a trend against institutionalization for several decades now.

    I’d recommend reading Kanner (1943), Kanner (1971) and Kanner (1972). It’s clear from this earliest work that autistics who were institutionalized since young had a dismal outcome, whereas autistics who had never been institutionalized had what we might call a fair outcome, although not necessarily a good outcome.

    In other words, old studies on adult outcomes in autism are skewed by the social construction of autism from the time, which is not applicable today.

  5. aMUM January 9, 2012 at 20:18 #

    I think it is so hard so read reports of very poor prognosis for children diagnosed with autism, that it is great to come across even one where some adults diagnosed as children with autism are living independent lives. It is hard to look at my bright little six year old, diagnosed with autism and not feel in my bones that with help he will make it.


  1. Autism Blog - » Blog Archive » Study: Adults with Autism… - March 19, 2009

    […] The news story is basically an echo of one that came out last Fall. Kev blogged it then. […]

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