i14ng

There’s a very popular way of talking about autism as “explaining” or providing a “why I am different,” that to me doesn’t make sense: https://intellectualizing.net/2015/03/31/not-explaining-auti...

There’s a misunderstanding that diagnosis of autism is finding a cause for some traits. The reality of the DSM is that autism literally is a list of traits - a shorthand renaming of the list. There’s no implication that it’s a single condition, or a discrete condition, or has any known cause, or explains anything. https://intellectualizing.net/2013/12/17/book-rethinking-aut...

Naming or categorizing isn’t the same as explaining!

Anyway kind of a pedantic point I guess but maybe autism explains the need to make those :-)

I do think there’s value to finding kindred spirits and community, which categories and names can help with.

aspergers was lumped into autism, it wasn't made non-diagnosable. Previously the criteria for aspergers were the same as autism but without delayed language development. Now they decided that distinction wasn't worth singling out with a special diagnosis so it's considered autism regardless of language delay. Those who had aspergers are now considered to simply have autism.

autism isn't adult-acquired though (literally by definition, DSM specifies that it must be present in childhood). So you'd need parent and child to share environmental factors during their respective infancies.

To clarify, I'm not trying to argue definitively that these traits are all genetic vs. acquired by watching one's parents. Perhaps it's some mix, though mostly-genetic seems likely to me. I _am_ trying to say that often the traits run in families, which argues against external causes such as vaccines and chemicals.

If you're saying it could be the autistic behavior is learned rather than genetic, then I agree, you'd need a twin study to rule that out conclusively. However, when people say "the autism epidemic is environmental" they usually mean vaccines or chemicals or something, not "learned from the parents."

Despite the quantity of autism research, most of it is quite bad and not that helpful on questions like this.

Kids often share autistic traits with their parents. The parents are either diagnosable themselves or very nearly so.

My son is the third or fourth generation to be likely-diagnosable, for example.

Currently-middle-aged parents without intellectual disability had almost zero chance of being diagnosed as children, because when we were kids autism was defined such that you usually had to be nonverbal or intellectually disabled to qualify.

A very commonly-reported experience is for parents to be diagnosed after their children are diagnosed.

When the autism diagnostic criteria were broadened in the DSM, the people making that change predicted that we would see this rise in diagnostic rates. That was the intent, to help a broader range of people. It's played out slowly as clinicians and schools were retrained. There's also been an increasing incentive to diagnose as autism in addition to intellectual disability when possible, because insurance companies and schools will do a lot more if it's labeled autism.

So we've seen that shift. The diagnostic criteria changed a lot, not just a little, over time.

By coincidence, Wakefield launched his fraudulent crap about vaccines a few years after the criteria were broadened, and that became the popular explanation rather than the fact that the criteria changed. Belief in his BS is perhaps fading but it's still around.

The "epidemic" was predicted and an intentional outcome of the DSM criteria change, though.

If you hang out with a bunch of families with autistic kids, it's very obviously inherited in a large fraction of cases, because the kids are so much like their parents.

Another large fraction is likely genetic in the sense of "de novo" mutation, rather than inherited genes. There's likely also a group of environmental cases, mostly prenatal environmental factors.

Because social function depends on many coordinated aspects of human cognition, any condition that has a fairly global effect on the brain can create traits meeting the autism diagnostic criteria. The criteria are very broad, with many different ways to meet them.

It's important to realize that autism is a broad category, not a single condition, and no proposed single gene or environmental factor ever seems to relate to more than a few percent of cases. https://intellectualizing.net/2013/12/17/book-rethinking-aut...

Some of those causes could well be new to the modern world, but the changing diagnostic criteria do explain most of the expansion in diagnoses already, so there isn't a lot of evidence that we need to be looking for something novel to explain the increased diagnoses.

The article says 1-5% of the ASD cases they looked at were related to the "HARs" (human-accelerated regions). The most important thing to understand about autism is that it isn't a single condition, but an umbrella category with a bunch of conditions grouped into it.

It's a trait (trait cluster, really), analogous to intellectual disability or giftedness, rather than analogous to a condition with a single known cause like trisomy 21. See https://intellectualizing.net/2013/12/17/book-rethinking-aut... and https://intellectualizing.net/2015/06/04/why-it-matters-whet...

Once we understand that autism isn't a single condition, a lot of the ways the public (and researchers) talk about autism turn out to be kinda nonsense.

Professional diagnosis would involve a standardized set of questions, like ADI-R http://www.wpspublish.com/store/p/2645/autism-diagnostic-int... or ADOS module 4 https://en.wikipedia.org/wiki/Autism_Diagnostic_Observation_... Often the clinician would also want to interview parents, spouses, friends to get a third-party perspective on a person's behavior or ask about their behavior as a child.

It is a relatively objective process - it does screen out 99% of people, and clinicians usually (80%-ish of the time IIRC) get the same yes-or-no answer for the same person.

There's no medical test because (like most of the DSM) autism is a description, rather than an underlying cause. That is, if you diagnose flu using a set of symptoms, you're using the symptoms to predict that the virus exists. If you diagnose autism using the checklist in the DSM, you're simply saying that you saw the stuff on the list - there's nothing said about cause. See also here: http://intellectualizing.net/2015/03/31/not-explaining-autis...

This is a fundamental difference between DSM diagnosis (which is putting people in descriptive categories, without explaining "why") and medical diagnosis of many conditions with a known cause (which means identifying an explanation such as a virus).

It varies a lot by city and state what the available resources are. google and ask around for local autism experts. There are often autism specialist centers of various kinds, for example at universities, and there are also psychologists and psychiatrists who specialize. It works a bit differently in every city.

... when I wrote 89.9 I meant 98.9 (perhaps obvious)

It should be noted that in kids nobody can say whether it will _always_ interfere with their daily life in a material way. Autism diagnosis in a preschooler usually (90%-ish?) means it will, which is amazingly accurate if you think about it. But it's definitely not 100%. So in little kids, the diagnostician is saying they _think_ it will interfere with daily life (and that it is interfering today, but saying that about a 3-year-old doesn't necessarily mean always and forever).

See also http://intellectualizing.net/2013/09/21/the-trouble-with-ove...

Another issue is that it's sometimes easier to have a personal difference interfere with school than it is to have it interfere with real life. That argument is at http://intellectualizing.net/2015/03/12/schools-are-disorder... Real life is more flexible than most schools.

As with any child, one can address behavior issues without shaming or hating who the child is. In an adult relationship, it's the difference between "You make me feel bad when you do xyz" and "Why do you always have to be such an a-hole" - these are two very different ways to raise an issue.

That's what many (including me) are saying about autism. The point is not to cherish harmful behaviors. The point is to cherish the children who are different. Their differences make it harder for them to learn some behaviors, but they do have a positive side much of the time.

My son is awesome and I would change nothing. Personally I find him much easier to get along with than "typical" kids.

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."