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Why Were Cases Of Autism So Hard To Find Before The 1990s?

AGXStarseed

Well-Known Member
(Not written by me. Please note this article mentions the vaccine debate but remember not to discuss the vaccine debate in your comments, as that is against Aspiescentral's rules).


That’s the question Steve Silberman asks in his March 2015 TED talk about “The forgotten history of autism.”

In his talk, Silberman notes that the trajectory of understanding autism as a condition and a diagnosis has not followed what science or experience might predict (disclosure: I am personally acquainted with Silberman and consider him a friend). Instead, he says, in researching his upcoming book Neurotribes: The Legacy of Autism and the Future of Neurodiversity,

“I learned that what happened has less to do with the slow and cautious progress of science than it does with the seductive power of storytelling.”

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The storyteller in this tale, or at least its original narrator, was Leo Kanner, a child psychiatrist at Johns Hopkins. In the 1940s, he published a case series describing 11 boys who exhibited a specific suite of characteristics, including flapping and anxiety about changes in routine. Silberman, in his talk, notes that Kanner seemed to take a kind of proprietary ownership of what autism was and was not, discouraging the diagnosis in people who had seizures, for example, even though epilepsy is actually common among autistic people.

Silberman begins his talk by sketching out why autism has become such an emergent motif in the developing cultural panorama of the 21st century. Highlighting a graph showing an inexorable and steep increase in the prevalence of autism over recent decades, Silberman notes that the increase is a departure from Kanner’s own assertions that autism is a rare entity. Indeed, the steepening slope has led some people–and high-profile autism-related organizations–to assert that autism is an epidemic, like, as Silberman says, something you could “catch from another kid at Disneyland.”

But as Silberman notes, Kanner himself contributed considerably to that perception of rarity. The Hopkins psychiatrist bragged at one point that he’d turned away 9 out of 10 children from his practice who’d arrived as autistic based on the judgment of other clinicians but had departed without an autism diagnosis. He wasn’t the last clinician to express pride in undiagnosing people at almost exactly that rate.

How much of a role did this grasping ownership of the diagnosis of autism play in the public perception of the condition and its prevalence in the decades that followed? How much was it involved in the misunderstanding of autistic people who walked the world—or were institutionalized away from it—with other diagnoses or worse?

I’ve sketched out before in short form some of the ways we went from Kanner’s assertions of autism’s rarity to today’s 1 to 2%, and it has nothing to do with vaccines. Silberman, in his TED talk, traces this history with detail and color, and ultimately notes that “Kanner had been as wrong about autism being rare” as he was about asserting that parents were the (environmental) cause of the condition.

In observing the current rates of autism based on the US Centers for Disease Control and Prevention, now at 1 in 68 children, Silberman points out that if these numbers are accurate, then

“autistics are one of the largest minority groups in the world.”

Silberman observes that a perfect triangulation of changes in criteria thanks to the work of the insightful Lorna Wing, along with the introduction of effective clinical tests and the popularity of the movie Rain Man, brought autism to the forefront of national and global awareness, from the clinic to the general public. And then, Silberman notes, another storyteller arrived on the scene:

Andrew Wakefield came along to blame the spike in diagnoses on vaccines, a simple, powerful, and seductively believable story that was as wrong as Kanner’s theory that autism was rare.

And we all know how at least part of that story ended. But the narrative arc for autistic people still might hold some hope. According to Silberman,

To be sure, autistic people have a hard time living in a world not built for them. [Seventy] years later, we’re still catching up to (Hans) Asperger, who believed that the “cure” for the most disabling aspects of autism is to be found in understanding teachers, accommodating employers, supportive communities, and parents who have faith in their children’s potential.

Silberman’s book comes out in August, and I’ll be posting a review of it here. Based on this TED talk, I’m holding out hope that this time, the right story will be told, one that shapes itself into a happy ending based on understanding, accommodation, support, and faith in potential.

I am a science writer, editor, and educator with a background in developmental biology, physiology, and English literature. Read more about me here and find me (too often) on Twitter.


SOURCE: Why Were Cases Of Autism So Hard To Find Before The 1990s? - Forbes
 
I like the pretty picture. :kissingheart: Even if one of the butterflies has mismatched wings. I wonder if that's a real breed, an artistic goof, or a representation of us hidden oddballs?

Ahhh, Kanner and Wakefield. A couple of regular Einsteins there, and I do mean that sarcastically. I would have loved a proper psychiatric evaluation on those two and that bleach guy.

Lorna Wing and Judith Gould are two names we don't need to forget either, they were influential in getting the handling of autism back on track. It looks like we may get to add Silberman to their list if his books gains enough popularity.
 
AsheSkyler, you're pretty cool. Know that? I love how you think and express yourself. :)
 
I do think the CDC numbers are pretty close. I'm sure there are a few misdiagnosis in there but, perhaps 5% to 10% is all.

Perhaps it's simply that the entertainment industry attracts us due to the necessity of wearing a beautiful facade, carefully crafted and put together by experts. It is a world in which someone will tell us exactly how to be not just socially acceptable but, admired and adored by thousands. We are given scripts for interviews so we know exactly what the interviewer will as and, exactly what we are supposed to say in reply. We are told how to dress, walk and talk for success. When we do make a mistake, there is a team of spin doctors and publicists working to cover it up before we even realize we have made a mistake, or it's simply edited away and thrown in the trash bin. It is a world of perfect people where even the most imperfect among us can be perfect. Sure it's all an illusion but living the illusion is better that the lives we would have had without the illusion and, the hoards of professionals that created the illusion.

I know that at least 40% of the performers I know are on the spectrum and, I suspect even more, many of them very high profile individuals, some on their way up and, some down and out. You see the tells, the stims in interviews, the stammering at a surprise question, the downcast eyes yet no one in all the world stops to think that the star is on the spectrum. Watch for it, you'll see, there are a lot of us out there.

If there are that many in the spotlight, how many more are out of the spotlight, just everyday people in the sea of humanity on this planet?

Yet nobody really knows how many of us there are and if there were no misdiagnosis and, everyone were diagnosed early in life, think what a different world we might live in. A world where ASD was not a disease or illness but, simply a fluke of genetics that many have, just like brown hair, blue eyes or tan skin.
 
I think it is fair to say the numbers will never reflect how many auties are out there.There will be misdiagnosis that will either add or subtract to the numbers,there will be the hidden cases that reflect myself and those who choose to leave well enough alone. Every time I see some of the members post about what their take is on the autism spectrum,I feel it is necessary to point out just how many quacks are involved in the black arts of the psych world. I have a short read in my blog about the fine and upstanding quack Dr. Freeman and his infamous icepick lobotomy story for those who place full trust in the latest fixes and garbage that is published.
 

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