Autism: Epidemic or awareness?

At Discover's big-idea blog The Crux, Emily Willingham has a really interesting post about the prevalence of autism—is it actually increasing, or is this really about medical definitions and increased attention?

This is a topic we've talked about here on BoingBoing before, most recently back in March, when Steve Silberman offered some scientific evidence that suggests the ostensible increases in autism prevalence are "caused" by more accurate diagnosis.

But Willingham's piece adds a couple of new, interesting details to that still-emerging story. Being more aware of neurodiversity makes it look like there's more neurodiversity than there was before we were aware of it. And that was true even for the guy who invented the diagnosis of autism.

Leo Kanner first described autism almost 70 years ago, in 1944. Before that, autism didn’t exist as far as clinicians were concerned, and its official prevalence was, therefore, zero. There were, obviously, people with autism, but they were simply considered insane. Kanner himself noted in a 1965 paper that after he identified this entity, “almost overnight, the country seemed to be populated by a multitude of autistic children,” a trend that became noticeable in other countries, too, he said. 1953, one autism expert was warning about the “abuse of the diagnosis of autism” because it “threatens to become a fashion.”

Read the rest of Willingham's piece, which includes a detailed look at several different studies that back up this view of autism with evidence. It looks like the majority of the "increase" in diagnoses can really be attributed to the process of diagnosis itself.

Image: 74/365 - autism awareness., a Creative Commons Attribution (2.0) image from macbeck's photostream


  1. I also wonder, at least in the Asperger end of the spectrum, that changes in the social world have made even the slightest oddity stand out like a sore thumb. It seems for instance that we are all expected to be social butterflies these days.

    1. But on the flip side, it’s also less of a stigma. Far fewer people are getting hidden in the attic or having a spike in put through the head for being a little ‘weird’ today. For which I’m personally very thankful.

      1. It’s less of a stigma in that we’re not likely to get abused like we may have been in the past, but @digi_owl:disqus is right about everyone being expected to be “social butterflies”. 

        It’s surely always been the case that people skills and being sociable is important and critical to being successful in your endeavors. But I do feel that today’s climate is murder for less-sociable people. It’s hard to explain and everybody’s situation is different, so I’ll just give an example.

        In college (graduated 2008, so recently), I was home for the summer and my sister got me an interview to work the night shift stocking shelves at Target, where she worked. She was doing the same job and told me that you pretty much never need to talk to anyone on the job, and obviously not customers since it was the overnight shift. I didn’t get the job because the interviewer thought I was too quiet!

        If socially awkward people can’t get jobs stocking shelves overnight, then what sort of jobs are they supposed to get?

        For the record I’m not that awkward anymore, but I’m still not neurotypical and it’s still causing me issues where it really shouldn’t.

  2. I’ve been to workshops where the experts explain that early diagnosis is the key to intervention and treatment. They’re right, but the result is that no one ever wants to err on the side of not placing a kid on the spectrum. Lots of false positives are inevitable.

    1. What are the effects of placing a non-autistic child in autistic treatment, other than inflating costs?

      1.  This is an excellent question. If the treatment is focused on increasing social communication skills, when social communication is not an area of concern, what are those programs like for all of the children?

  3. Thank you for this. I have suspected that this has been the case, it seems so obvious.

  4. Then it turned out to be Aspergers that became the fashion, but I guess that counts under the spectrum.

  5. It is caused by the large amount of antibiotics in our diet, especially for those under 3. It takes about 3 years for the bacteria to establish themselves in a baby’s digestive tract and oral antibiotics or those found in meat interfere with they growth, resulting in the abundance of the bad bacteria, the ones which produce neural toxins.

  6. I was just talking to my mom about this. My mother was a gifted education teacher, so I learned from her all the markers of gifted children (intellectually intelligent beyond their peers, emotionally behind their peers). When my daughter was in first grade, one of her good friends fit the gifted profile to a T. Recently I learned this kid has now been diagnosed with Aspergers. I was telling my mom about this and said, “Well, I guess now all the kids they used to call gifted now are called having Aspergers,” because to me it seems like all the things we was trained to assess for are now considered markers of autism.

    1. I’ve gotten through my life never thinking I was something like autistic. Then that WIRED test came out way back. I took it. Possible Autism Spectrum. Asperger’s.

      Took another test on some other site recently out of boredom. Same result.

      I have social anxiety and a naturally introverted personality. Personally I think the introversion led to the social anxiety because like someone mentioned if you’re not a loud boisterous extrovert you’re a freak. All the verbal attacks and weird social situations that made no sense wore me down. I avoid people as much possible. It’s just too difficult and stressful to deal with them when I don’t have to.

      My point of that background was to explain why I was in therapy where it was suggested to me that I be assessed for this thing I’d never heard of at the time called Asperger’s. When I was told it was a form of autism I just laughed. I’ve never seen anyone about it, but basically it seems like any naturally quiet person with any consistent interests or hobbies, and an  IQ higher than dirt is on the spectrum these days.

      1. I think it’s important to realize this (though I’m not sure all quiet introverted people are on the spectrum). What it means is that our brains operate differently from everyone else’s. This isn’t an excuse, though many people use it as one, but rather it’s knowledge you can use to help you approach uncomfortable situations and to understand other peoples’ behavior. 

        And it really helps to understand that there isn’t something wrong with you for being worn down by what are “normal” social situations to other people.

        So I think it’s a good thing that more people are getting this diagnosis (or self-diagnosing) and that more people are becoming aware of it and what it really means. It won’t make the world vastly easier for us to navigate, necessarily, but we won’t be outcasts as much. This may be something of a pipe dream, of course.

      2. I read somewhere years ago that a person in the US would be diagnosed with clinical depression for behaving like what the UK would simply call a quiet person.

    2.  Don’t worry.  We’ll medicate those talents completely out of sight.  Vonnegut figured it out some time ago in “Harrison Bergeron”.

      1. I wonder how it will work out if this is what is going on. One of the reasons my mom said they had special gifted classes was because the gifted kids were more likely to drop out, more likely to use drugs, and more likely to commit suicide. The gifted ed classes were supposed to keep these at risk kids in school. 

        Most of the regular teachers didn’t see the problem kids as the ones that were supposed to be in the gifted program; they thought it was for the straight A students. Most of the parents thought the gifted program was an honor to be in and wanted their kids in it. By the end of my mother’s time as a gifted ed teacher they had so lowered the standards to let in all these kids the parents and teachers thought were deserving that the kids really needing the help were once again swallowed up in a sea of mediocrity. 

        So, if they are now going to label all these kids as Aspergers, I just wonder if with the new label these children will still get access to the more advanced academic classes in addition to medicine and therapy on the social issues. It seems to me that in addition to addressing the problems, schools also need to meet the kids needs for more advanced academics.That is, Aspbergers is not just a problem, it’s also a gift that needs to be nurtured.

  7. I’m really torn on this, because while on one hand having met enough autistic people I know how serious it is and that it needs to be treated properly and not ignored, but on the other hand the number of them around now according to official statistics is really worrying: an empidemic even. But I’ve never met anyone autistic who didn’t seem genuine.

    It may be true that they have always existed and been treated as insane, but i don’t think the madhouses ever housed enough people to correspond to the numbers now diagnosed as autistic. People talk about “learning how to pretend to be normal,” and maybe that’s what most autistic people used to do. And if those people weren’t getting taken away by the men in white coats, then maybe that was the best thing for them. Sometimes by pretending to be normal, you learn to be. Maybe that’s what everyone does to an extent.

    So while I could never imagine my autistic nephew benefitting from being forced into a normal mold, it’s definately possible for me to imagine that sometimes being told “this is just how I will always be and other people need to learn how to deal with it” just makes a problem worse. The modern world (and america particularly) is very individualistic, but if a bit of peer pressure could have helped a few of the thousands of autistic people out there to live a normal life, get a normal job and fall in love one day, I think they would have been very grateful.

    1. I can pretend to be normal, and I do regularly when absolutely necessary. It’s the most uncomfortable thing imaginable and in the most difficult situations it makes me feel awful the rest of the day (or even longer).

      And you never really get used to it. I’ve been doing it since I was about 14 and am 25 now. It really hasn’t gotten any easier.

      What you’re advocating isn’t much different from telling gay people to pretend to be straight the rest of their lives. Being gay or having asperger’s is hard-wired and you can’t change it. It’s that attitude that we can choose how to act that trivializes people who are different and causes them to repress themselves.

      I know you don’t mean that, but that’s what you’re really saying. That attitude is the prevalent one among “normal” people and I know it’s hard to understand why that doesn’t work. 

      I don’t know what the solution is, but being told your whole life to act differently than your true self as I was (and continue to be!) even by my own family, is not it.

      1. Good post. I suppose it comes down to whether or not we believe a trait to be underireable or arbitrary. To use your example, I don’t think many gay people wish they were straight, even though they think it might be easier sometimes because of the prejudice they have to deal with. Whereas most of the people with Aspergers I have met, would have liked to have been “cured” if such a thing were possible.

        Like I said, I don’t believe that “pretending to be normal” is best for everybody, certainly not any of the autistic people I have encountered. But clearly, the vast majority of people do pretend to be normal, and through doing so, learn to be. By medicalising these conditions, we attempt to draw a line beyond which we tell people that their condition is fundamental and will never change, and that the world must learn to accomodate them. But clearly this is not an exact science, and such absolute categorisations imply a false level of accuracy. Until we accept there is a disadvantage to diagnosis as well as advantage, that line will just continue to move further and further back into the rest of the population, and maybe one day, just being a jerk will be permissable with a doctors note.

  8. You’ve also got to wonder how much our changes in raising children are relevant. Modern children are much less likely to have brothers and sisters, less likely to have pets, and are likely to spend more time playing video games and less time playing with each other. I’m not usually one to believe the “video games are turning our kids into zombies” stuff, but when you read biographies and hear people talking about how influential their childhoods were in making them the people they are today, it doesn’t seem a great leap to imagine how these changes might hinder the development of children’s social and communication skills, or their ability to empathise with others.

  9. I haven’t had the chance to visit the black side of my family in awhile. Last year I was able too, I basically moved in with an aunt to  rehabilitate her after major joint surgery. She told me she didn’t get along with her male grandchildren or nephews, which was odd for her to say, being a retired high school principle.  Then she said something I’d never heard of, that autism runs high in black males. She said she saw it spread in the school system too. I thought she was kidding until I met all of them. Even  both her daughters husbands function in a strange manner and their five combined boys, ranging from 8-24, are severely socially inept, really a sad thing to see. My aunt lives in a huge condo complex, mostly black, and many of the boys act in a way I’m not used too, almost vacant, their personalities seemed remote. 

    But I wonder, is it learned? Are they so disconnected by living in a virtual world they’ve never learned social skills? Or are is it really a “disease/disorder”?

  10. I know some autistic people who can make themselves understood to a stranger. They may live a hobbled life, but they can live independently.  If more sensitive tests pick up more people on the borderline of functionality, that’s something to notice.

    Another autistic kid I know is unable to function independently or make his needs known to strangers, if he ever gets separated from a caregiver, he won’t be able to say his own name. If the more sensitive tests are turning up more people like him, then there has got to be a corresponding drop in *other* diagnoses, because there is no way this kid is not getting flagged.

    Likewise, if the rise in autism cases is centered on the low functional level, that would point toward some kind of environmental effect. This isn’t a result of bad parenting, as reassuring as that would be.

  11. The autism spectrum runs from “high-functioning Asperger’s” kids who are headed to Ivy League schools, to kids who never talk and have to be restrained to not bang their head against the wall. I work with a lot of these kids, and a lot of the high-functioning ones are usually quite smart, carry on a conversation well, often have a great sense of humor, etc. The main deficit usually seems to be in social skills, and the only help they really need is some form or another of social skills training, which helps them function in group environments that can be tricky (like junior high). This really depends on their community- some kids who seem “off” have understanding peers and do fine. The nonverbal kids need intensive, intensive services and often lots of medications so they don’t hurt themselves. 

    In my department we’ll often meet kids who seem “spectrum-y” (yes, this is how we talk), but as long as they are happy and doing well and developing fine, we don’t put them through the loooong process of being tested and evaluated, because what’s the point? They’re happy and doing well and developing fine.Part of the problem is that the spectrum is so incredibly wide, which makes studying “autism” as en entity really difficult. Lumping the surgeon in training in with the person who never learned to recognize faces is ludicrous, but as in most spectra it’s hard to draw the line.  I’ve heard theories it’s from environmental toxins, increasing age of parents, vaccines (O HAI JENNY MCCARTHY), etc- some more plausible than others. There are certain ethnic groups where autism as a whole occurs more frequently, which points to at least a partly genetic component, but most noninfectious diseases (and some infectious) have at least partly a genetic component. 

  12. I’ve wondered about this with cancer, too. It seems like every other person is being diagnosed these days, and people rush to blame environment/toxins/sunspots or whatever. But back in the day didn’t we just say they died of “natural causes” when it was really cancer that killed them?

  13. Great point. I think that when these studies come out they really should include some way to estimate whether the effects they’re seeing are actual increases in a certain condition or just increases due to more sensitive diagnosis techniques. 

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