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What Hacker News says
- If you want to understand what the current research says it means, a great book is Rethinking Autism by Lynn Waterhouse; see my review of it at http://intellectualizing.net/2013/12/17/book-rethinking-auti... and the book on Amazon http://www.amazon.com/Rethinking-Autism-Complexity-Lynn-Wate...
The "disease" analogy is grossly misleading because it makes you think it's a single "thing" with a single cause; the right analogy is to a dimensional trait (such as intelligence), or traits perhaps (such as both social/communication skills on the one hand, and repetitive behaviors on the other). Then think about many different conditions resulting in this trait, much as many different conditions result in intellectual disability (or intellectual superiority). As with intellectual disability, autism diagnosis is more of a semi-arbitrary cutoff on the scale, rather than a binary yes-or-no.
I say "semi-" arbitrary because diagnosis is an attempt to locate "where on this scale people start to really need extra help," but "arbitrary" because there isn't a strong scientific reason to put it at say 99.1 percentile vs 89.9 percentile.
As with variation in intelligence, autism appears to be mostly genetic, with some impact from environment. The underlying condition resulting in autistic traits varies a lot. Sometimes, the condition may have other consequences, such as seizures or intellectual disability. Other times, the condition is best thought of as simply an extreme personality type, or something like that.
Think about how various conditions resulting in ID can have accompanying issues (such as heart problems with Down syndrome). When someone says seizures or gut problems or whatever are "autism," that's like saying heart problems are intellectual disability. It doesn't make any sense. Autism is just the social/communication part, not everything that's up with someone.
If you work in tech, you know a lot of autistic people, you just maybe don't know it, and they often do not know it themselves. Some of them are quite successful and not "obvious"; others are extremely clear to anyone who knows what to look for. But most of them probably do have some level of real disability, or if nothing else did have some level of it as children.
For many of us the disability is primarily in personal life (friends, etc.), or historical childhood difficulty, and we are highly competent at work.
I did not imagine that the diagnostic label applied to me until my son was diagnosed; but now I realize that it does apply or very nearly apply to me and several people I know (but I have no idea how to bring it up). Especially when they are having kids, I wish I'd known earlier that autism can be kind of the way my family is and many people I know are, and that it isn't always this big scary thing.
The tech industry should be much better informed about autism given its prevalence in our coworkers and ourselves. Even the many who aren't diagnosable may be closer to autistic than to average.
When those of us who are around 40 were kids, the diagnostic rate for autism was about 1/1000 and it's now a bit above 1/100, higher for boys. So the delta between those is the number of undiagnosed adults walking around today, who would have been diagnosed by modern criteria. It's a lot of people.
Some number of those got a different dx in the past (such as intellectual disability), but the kinds who are now in tech probably got no diagnosis at all most of the time, other than "weird kid."
- > yours, for interpreting her arguments to mean "ASD doesn't exist" (as far as I can tell, she makes no such claim);
To quote page 431 of her book Rethinking Autism (my emphasis):
> Taken together, these three claims and associated lines of evidence argue against the existence of autism as a single disorder, spectrum, or set of autism subgroups. If autism symptoms are not one disorder, and are not many disorders, what are they? The most parsimonious and least speculative view is that autism symptoms must be symptoms.
Her book is quite explicit in its claim that autism spectrum disorder does not exist. Her conclusion (p. 433) is given under the heading "AUTISM SYMPTOMS WITHOUT A DISORDER". The whole point of her book is to argue that the disorder "Autism Spectrum Disorder" does not exist, but the symptoms do. You might say she rejects the "Spectrum" and the "Disorder" in "ASD", but keeps the "Autism" as a reference to a set of symptoms – however, her "autism" is narrower than the DSM-5's "autism", since it only includes social impairment, and considers repetitive behaviours/restricted interests and sensory issues, to be distinct symptom sets coequal with attention-deficit/hyperactive-impulsive symptoms, intellectual disability, functional language impairment, seizures, see p.434-435
To quote the blurb on the back cover "Rethinking Autism... draws the potentially shocking conclusion that 'Autism' does not exist as a single disorder. The conglomeration of symptoms exists, but like fever, those symptoms aren't a disease in themselves..." (But, the book actually goes further than the blurb says it does, because it not only rejects the idea that autism exists as a single disorder, it also rejects the idea that autism exists as multiple disorders or a spectrum of disorders, as my quote above demonstrates.)
> and hers, for arguing that the formal definitions and categorizations of ASD need to be biologically valid
Biologically valid categories would be a lot more useful than biologically invalid categories, and one of her major points is that the research community's fixation on the later is getting in the way of actually discovering the former ([1], [2]). She argues that, in place of the current widespread practice of doing research with ASD-defined samples (a confirmed ASD diagnosis as a study inclusion criteria), samples should be based on all individuals showing neurodevelopmental symptoms (mixing together ASD, ADHD, epilepsy, intellectual disability, etc, into a single sample) and then trying to study the variation in the sample in order to derive biologically valid categories to replace the existing biologically invalid ones such as ASD. [3] is an example of a study along the lines of what she recommends (indeed, they've obviously read [1] since they reference it)
[1] https://link.springer.com/article/10.1007/s40489-016-0085-x
