She examines media depictions of children with autism, first in the 1960s, and then today. In those 40 years, professionals radically changed their minds about autism: in the 60s, a lot of people thought it was caused by emotionally distant refrigerator mothers; nowadays, we think it's a neural wiring disorder caused by deleted genes.
Yet, she says, while theories about the causes have changed, the media's view of what autism is hasn't, and assumptions from the 60s are still around (even amongst professionals). She identifies two enduring themes:
Fragmentation. The child with autism is somehow not a whole person; they are fundamentally "broken". And the family with an autistic child is emotionally shattered, too. In the 60s, the theory was that the broken family caused the autism. Nowadays, it's the other way round: having an autistic child stresses family relationships to breaking-point.
Imprisonment. The child with autism is at heart "normal", but their autism has them trapped, blocked-off from the world. Bruno Bettelheim, a leading champion of the refrigerator mother theory, called his major book The Empty Fortress. Either professionals, or parents, need to "break through" the autism to contact the "real" child imprisoned by the disorder. Likewise, this real child is eager to get out, but this is very difficult: they are crying out for help. In the 60s, it was psychoanalysis that could free the child. Today, it's anything from Prozac to chelation and other quack "biomedical" cures.
The problem with these kinds of articles is that you can really make up any themes you want, and find examples to fit. That doesn't mean it's a pointless exercise, it just means that the examples can't prove the analysis right. You need to ask yourself: does this, in general, ring true?Sarrett's analysis does ring true for me, especially the theme of imprisonment, which is almost never made explicit, but it seems to lurk in the background of a lot of modern thought about autism. The autistic isn't really autistic. Their autism is something external - if only we could reach the normal child underneath! Every attempt to "cure" or "rescue" the autistic child relies on this belief.
I said that this paper is sadly brief. There's so much more to say on this topic; in particular, we need to compare representations of autism to those of other developmental disorders like Down's syndrome, in order to work out what's specific to autism as opposed to just general "disability" or "disorder".
However, I think if you did this, you'd probably end up agreeing with the paper. I can't remember Down's syndrome being portrayed as a kind of self-fragmentation or imprisonment; this article seems quite typical.
Sarrett recommends accounts by authors who have autism themselves for an alternative and more valid view of autism: people like Temple Grandin and Daniel Tammet:
autistic voices can promote a much needed faithfulness and tolerance to future representations of autism and those diagnosed with autism.Although she admits that these authors only speak for a subset of those with "high-functioning" autism or Asperger's, and that
there remains a population of people with autism who are not writing, speaking and reading, making the representations advanced by these narratives subject to questions about generalizability.
Sarrett JC (2011). Trapped Children: Popular Images of Children with Autism in the 1960s and 2000s. The Journal of medical humanities PMID: 21225325
13 comments:
Interesting stuff as always.
You might be interested in this post from Autist's Corner:
In or Out? Using Spatial Metaphors to Describe Autism
http://autistscorner.blogspot.com/2010/02/in-or-out-using-spatial-metaphors-to.html
Also relevant is the whole politically correct idea of using person-first language - talking about "people with autism" rather than "autistic people" or "autistics"/"autists". I've read a few pieces by autistic people who argue that they are not a person with autism because if you took the autism away they'd be a different person. It's an argument that makes a lot of sense to me.
See eg Why I dislike "person first" language
http://www.jimsinclair.org/
I now make a point of using "autistic" in papers and reference these blogs when reviewers (usually in quite pompous terms) accuse me of being disrespectful.
I was diagnosed as having serious emotional neglect disorder at the time. Refrigerator mother indeed.
Got treated for that, which didn't help much obviously.
Can't say i ever felt 'broken', 'shattered' nor 'imprisoned'. I just thought at the time everyone was weird and I was normal.
Still do actually.
There is a second image of autism, incompatible with that of the locked-in normal person: The Autistic Savant.
The image of someone whose mental abilities are extremely underdeveloped, except in one area, or for one skill, which is supernormal.
Thus the autistic person who can draw anything they've seen from memory, or the one who can tell you which day of the week a specific date was or will be. Or, of course, Rain Man.
I wonder how many parents, on being told their child is autistic, wait for their child's mental superpower to emerge?
(In parentheses, I was once asked to gave a presentation on ideas of autism to a group of a dozen autistic adults. After a minute, it was painfully clear that none of these self-described autistics had any form of autism. They were just slightly eccentric adults who used the term to justify their eccentricities.)
Kapitano,
AFAIK, the film Rain Man was loosely based on the story of Kim Peek, a man with an eidetic memory with another developmental disability. Can't remember the name, it was X chromosome linked? Anyway, I THINK Peek didn't have a corpus collosum connecting his two cerebral hemispheres, instead the projections that would have made up his CC went...somewhere else. Um. Giving him a great memory.
Anyways, off topic, but not autism!
There are people other than Grandin and Tammet who can articulate their autism experience, but wouldn't necessarily be considered "high functioning" to anyone, such as Amanda Baggs.
http://en.wikipedia.org/wiki/Amanda_Baggs
Chris: As you say, Kim Peek didn't have autism, he had FG syndrome, a genetic syndrome which caused, amongst others, a lack of the corpus collosum and severe damage to the cerebellum.
I believe however that he wasn't diagnosed with this for a long time i.e. Wikipedia says that the FG syndrome diagnosis and lack of the CC was only discovered in 2008; he died in '09.
I don't know if he had a diagnosis of autism before that.
Leah Jane: Good point. Actually, Sarrett mentions Baggs as one example of an "autistic voice". I didn't put that in the post because I didn't know anything about Baggs until I read the paper so wasn't sure what to make of it!
Kapitano wrote:
"(In parentheses, I was once asked to gave a presentation on ideas of autism to a group of a dozen autistic adults. After a minute, it was painfully clear that none of these self-described autistics had any form of autism. They were just slightly eccentric adults who used the term to justify their eccentricities.) "
Kapitano, you raise an interesting issue : there appears to be no objective measurement of autism.
I speak as a "eccentric" person who has been alternatively "diagnosed" with "schizoid personality" "social anxiety disorder" "aspergers" or as another shrink put it "a minor case of aspergers".
As far as I can tell, mental illness diagnosis involves visiting a psychologist or psychiatrist, telling whatever sob story you have to tell, and then the professional projects whatever socially constructed bias they have onto your sob story to produce a label.
One ivy league psychiatrist I briefly sought treatment from told me "schizoid personality" was invented so that psychologists could bill insurance companies for money- undoubtedly a controversial view, but I'm sure it was heartfelt.
Your comment that the adults you encountered were clearly only slightly eccentric seems rather strange.
I don't drool on myself in public, I am college educated and have a middle class professional job, you would probably classify me as a mere "eccentric", yet I never asked for the aspergers label, nor had I ever heard of the condition before visiting a psychologist for social issues.
What makes you think the folks in the room were merely "self described" autistic, as opposed to people who had been told they had autism?
A third category of HFA is those of successful eccentrics. Dr. Michael Burry http://en.wikipedia.org/wiki/Michael_Burry
is a good example of such a person. A diagnosed HFA.
Many such visionaries are linked with HFA
These kind of people correlate with the higher level of fluid intelligence in those with HFA or even Autism
" We found a trend of superior nonverbal performance in Raven's Test in our HFA/AS participants compared to controls, and this "superiority" achieved statistical significance in the HFA/AS subgroup with a FIQ greater than or equal to 90. Superior fluid intelligence seemed to exist in individuals both with HFA and with AS."
http://eric.ed.gov/ERICWebPortal/search/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=EJ878587&ERICExtSearch_SearchType_0=no&accno=EJ878587
Excellent comments anonguy;
As for Kapitano, I am sorry, but I don't believe in the opinion of people who go straight to compare autism with what they saw in the movir Rainman. Now, unless you are a developmental or neuropsychologist yourself; please refrain from giving people an "eccentric" diagnosis. You over generalize too much. Two people with ASD are exactly that, two people with ASD. There are not two cases that are the same. That's why is a spectrum.
Excellent piece.
I want to point out that, in addition, to Amanda Baggs, there are other nonverbal autistic people who communicate their thoughts and experiences through the written word: Sue Rubin, Cal Montgomery, Sharisa Kochmeister, Jeremy Sicile-Kira, and Carly Fleischmann, to name a few. While our challenges are different in many respects (I am verbal with a diagnosis of Asperger's), many of the ways in my nonverbal peers describe their experiences resonate very deeply with me. I find far more shared territory than not.
It is sad that Daniel Tammet is being cited here as giving a "valid view of autism". His descriptions of his condition have significant inconsistencies.
Joshua Foer's book "Moonwalking with Einstein" makes a good case that most of what is written about Tammet, including the peer reviewed neuroscience findings, is totally unreliable.
Foer's work implies that scientists, including those in the neuroscience field, have been gullible and uncritical in failing to properly test Tammet or research his background. Yet I have seen no public reaction to Joshua Foer's work from the neuroscience community, either to rebut Foer or alternatively to accept what he says and retract the findings.
Amanda Baggs is an interesting example because she emphatically does not consider herself imprisoned (if anything, she sees neurotypical people are imprisoned) but it's very tempting to think of her in those terms.
Also, as for Foer on Tammet, psychologist Alexandra Horowitz does make a quick dismissive comment about Foer's take in her review of Foer's book: http://www.nytimes.com/2011/03/13/books/review/book-review-moonwalking-with-einstein-by-joshua-foer.html?_r=1&pagewanted=all
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