Autism incidence vs autism diagnosis
RFK Jr has dishonestly portrayed the increase in autism diagnoses over the past 20 years as an increase in incidence of autism to justify his claim of an environmental cause for autism. Multiple published and refereed reports using twin pair studies show 60-90% heritability for autism, and those are probably underestimates. What changed in the last 20 years is the diagnostic criteria for autism and the systematic application of the new diagnostic criteria.
A friend of mine has an autistic son who is in his 30s. Just to underscore the impact of how diagnostic criteria have change, here’s my friend’s experience with his son:
“By age [of diagnosis], T__ would fall into the late group (age 19), but he was actually early in the sense that he could have been diagnosed much sooner (age 2) if physicians were more aware of autism. In the 90s it was all about ADHD and everyone seemed stumped when they couldn’t make him fit that diagnosis. I remember a psychiatrist who watched T__ play for less than 5 minutes and then described everything about him; difficulty transitioning to new activities, parallel play, sensitive to clothing labels, sensitive to loud noises, emotional meltdowns, wears the same clothes, etc., etc. She basically recited a list of seemingly unrelated traits that were classic ASD and fit T__ perfectly. I was astounded. I thought she was magic. But she never said autism. We could have known when he was 2. Autism just wasn’t diagnosed very much at the time (although she must have known). There was also a psychologist who spent months showing T__ drawings of facial expressions, trying to teach him nonverbal cues. Same thing. Duh.”
Society is better off with the current diagnostic criteria. Understanding autism means we can intervene early to maximize the potential of every citizen. Lying about autism, like RFK Jr does, harms Americans and America.
A friend of mine has an autistic son who is in his 30s. Just to underscore the impact of how diagnostic criteria have change, here’s my friend’s experience with his son:
“By age [of diagnosis], T__ would fall into the late group (age 19), but he was actually early in the sense that he could have been diagnosed much sooner (age 2) if physicians were more aware of autism. In the 90s it was all about ADHD and everyone seemed stumped when they couldn’t make him fit that diagnosis. I remember a psychiatrist who watched T__ play for less than 5 minutes and then described everything about him; difficulty transitioning to new activities, parallel play, sensitive to clothing labels, sensitive to loud noises, emotional meltdowns, wears the same clothes, etc., etc. She basically recited a list of seemingly unrelated traits that were classic ASD and fit T__ perfectly. I was astounded. I thought she was magic. But she never said autism. We could have known when he was 2. Autism just wasn’t diagnosed very much at the time (although she must have known). There was also a psychologist who spent months showing T__ drawings of facial expressions, trying to teach him nonverbal cues. Same thing. Duh.”
Society is better off with the current diagnostic criteria. Understanding autism means we can intervene early to maximize the potential of every citizen. Lying about autism, like RFK Jr does, harms Americans and America.
Joel:
I spent a few hours with my son’s women friend, son. He was diagnosed as autistic. I took them to the Indian ruins which are impressive. A build of mud and clay multi-story building with entrances, stairs, and windows in Casa Grande. The significance and history of the construct did not seem to faze him. How could the build such with no mechanical help?
It did keep his attention for a while.
We went back to our house and continued to do a puzzle. He was different. Somewhere in there was a degree of distracted intelligence
Joel, the dates on your friend’s son’s diagnosis could be of importance. My experience of years-long discussion with doctors and others professionally involved in ASD is that it seems the focus on diagnosing sharpened a lot roughly 2005. If your friend’s son is in his 30s, this experience at 2 years of age was prior 1998 at latest. In my son’s full-time “school” the oldest attendee is 25. He got diagnosed at 4 and the 6 other (younger) participants were all diagnosed by 4 also; several younger than that. The center sees roughly a hundred clients, but most are not full-time. The director has been in the field many decades. She is not a diagnostician, but I’d be happy to bet she’d get it right as much as formal diagnosticians if presented with 100 3 year-olds. Her view is that the idea that increased reported incidence is mainly a function of diagnostic awareness and improvement feels strong for birth cohorts prior to 2000, but weakens for those 2000 and older. She also thinks there is a notable compression in diagnosis age. She rarely sees a client initially diagnosed older than 6 now; when she started in the field even 11 year-olds were not uncommon. I think experts might be a bit defensive here, though. The strong implication of it being mainly an issue of failure of diagnosis is that lots of older ASD individuals, who presumably got no special support, are “blending in” fine. If so, this should be of enormous scientific interest….’we missed like 70% of them, did nothing special for them and it wasn’t a disaster.’
@Eric,
” . . . the dates on your friend’s son’s diagnosis could be of importance.”
Yes. That’s the point of my post. Indeed, I wrote this: “What changed in the last 20 years is the diagnostic criteria for autism and the systematic application of the new diagnostic criteria.”
The only person I see who believes that autism is a “disaster” for all autistics is RFK Jr. I’m sure Temple Grandin doesn’t think so.
There’s a recent article proposing two forms of autism: early onset and late onset.
New Autism Data Challenge Long-Held Assumptions