“Nature never draws a line without smudging it” W. Churchill
This is s a book that I wanted to read for a while. (NB – it looks pretty imposing, but the font size is huge and it is hugely readable, so don’t let the size of it put you off!)
Following up from last week’s post, we know that subtitles are important, and in this case, the book delivers. The subtitle is “The legacy of autism and how to think smarter about people who think differently.” Which – is exactly what this book is about. The history of Autism and how we should interact with Autistic People.
In a way, this book is one long argument about how what most people think about Autism is wrong and, plainly, unhelpful.
So let’s start.
Vaccines cause Autism!
We’ve all heard about it. Diagnosis for Autism skyrocketed in the 70s / 80s, and one article (which was later retracted because the results couldn’t be reproduced) suggested a connection between common childhood vaccinations and Autism.
The thing with Autism is that it is super tricky to diagnose in babies. Most autistic kids seem to develop normally, even ahead of the curve, until they suddenly stop talking and start retracting into themselves.
As this change in behavior roughly occurs at the same time as immunizations, the correlation seemed obvious to parents desperately looking for an explanation.
Autism, however, is a genetic trait. Nothing to do with vaccinations. In fact, the refusal to get their kids vaccinated means that a lot of countries are now battling with epidemics of illnesses they thought they erased long ago.
Vaccinate your fucking kids, people.
2. Autistic People are those weirdos who rock back and forth and scream.
See, for the longest time, it was really, really hard to find common symptoms for Autism. Every kid showed slightly different characteristics, to the extent that for the longest time, it was not clear whether they should all count as one common phenomenon.
This is where the ‘Legacy of Autism’ part comes in and explains it really well.
You see, Asperger was a clinician in Vienna in the 1920s/1930s. He was working with kids that showed all kinds of weird behavior, didn’t communicate, and just didn’t seem to fit in.
Asperger argued that this illness (which wasn’t to bear his name until much later) worked on a spectrum. Some kids got the full blast, so to say, some kids were doing pretty well, some kids only showed some signs under some circumstances.
He was right on the fucking money, but of course, he was also a clinician working with disabled kids in Vienna in the 1930s, so you can imagine how this story goes. (The book, to its credit, doesn’t shy away from this story, either.)
After the war, Asperger’s work was largely forgotten. Psychology in general wasn’t a hot field of research in the 1940s, and it was mostly the European diaspora who fled the Nazis to continue work there.
Because there were so few people working in the field, one researcher could have an oversized influence on the direction of research. Which is great when the clinician has the right idea, and bad when he doesn’t.
Unfortunately for all People with Autism, the guy who was looking into this phenomenon, Kanner, got the completely wrong end of the stick. First of all, he worked on a referral basis.
This pyramid scheme of physicians referring kids to him meant that he only got to see patients that were on the far end of the scale. Everyone else had been diagnosed (and probably sent to a mental asylum) at a lower level.
Another consequence of this system was that Kanner only got to see kids from rich parents (ie parents who could afford to send their kids to physician after physician, knew a bit about medicine, and had the time to search out ever new Doctors.)
So, to put it simply – Kanner only saw the most extreme cases of Autism, and created this nightmare scenario of screaming, uncommunicative kids. He also said that the symptom only incurred in children (because he never saw any Adults, because the symptom only exists in kids.) You see where this is going?
And because he only saw a handful of the worst cases, he assumed that Autism was far less common than it actually is.
When people explain that there has been an ‘Autism Epidemic’ recently, chances are they are referring to Kanner’s numbers as a baseline, which were way too low.
Autistic People always existed, the world just never saw them.
3. Autistic People can’t communicate.
Also not true. They might not be able to talk, but they do communicate. Just in their own way. Often, they are communicating through their behavior.
There’s this really great scene about a researcher meeting two autistic adults at a convention. It’s worth quoting this exchange at length, because I think it explains the above point really well.
They were housemates who shared a passionate interest in maps despite the fact that they were unable to drive. When they asked him about the rout he’d taken to Chapel Hill from Lawrence, he replied that he’d ordered a TripTik from AAA and followed the instructions.
“They started asking me questions about which highways I chose, did I take this road or that, and I realized they knew more about the route than I did,” he recalls.
The following day, one of them recited a list of counties in North Carolina and Kansas that had the same names. It dawned on him that the man was using his special interest to try to make a connection with him, in a distinctively autistic medium of cultural exchange.”
I just imagine myself in this guy’s shoes. Someone coming up to me and ask about my route in detail would have left me pretty annoyed, simply because I do not pay attention to the road numbers. I follow the instructions on GoogleMaps, perhaps point out some cows that are standing by the roadside, but that’s it.
And I wouldn’t have understood that all these questions and this seemingly random information was intended to communicate, to talk to me.
That’s why Autistic People – even those who do talk, and the majority of them do! – are sometimes labeled as ‘weirdos’. But isn’t it us who don’t understand what they are trying to say?
Which brings me to my two last points, something that the book didn’t really get into, but i think it should.
Firstly – the book mentions this in a side note here or there, but the case still stands: Most of the people diagnosed with Autism are White Boys. It doesn’t make sense to think that this illness would be less prevalent in other populations, right?
I thought about it for a while, but then I think I figured it out. A lot of the traits of Autistic People are traits that society prefers in girls.
Quiet girl, playing with her toys in solitude for hours? Great child, what an angel.
Quiet boy, playing with his toys in solitude for hours? Shouldn’t he get out and play with friends?
This is just one example, but I think that a lot of girls go undiagnosed – especially those on the lower end of the spectrum – because their Autistic behavior is regarded as accepted female behavior in our society.
As for the non-White population – we all know why this is happening, right? Less access to health care, especially Mental Health Care. Simple as that.
Sometimes, as Kanner’s example goes, what you see is not all there is to see, and basing your numbers on only the cases you see may seriously skew your results.
(This, by the way, is another reason why Autism Diagnosis skyrocketed – once Doctors knew what to look for, they saw it.)
Secondly – and this is a Thought from yours truly – what if our world is making People more Autistic? What I mean by that is this –
I think our world these days is so fast, loud and intense that it has become less and less inhabitable for People with Autism.
Think about it this way – if you were a high-functioning Autistic Person 50 years ago, chances are you were never diagnosed. Not just because of the lack of access to Mental Health Care, but also because – well, you didn’t look like someone who had a Mental Health Issue.
Sure, you were probably a bit odd, talking about the same thing over and over, and you stuck to yourself mostly, but hey, nothing wrong with that. You held the same job throughout your life, becoming some sort of village fixture.
Today, a simple trip to the city is a bombardment on all of our senses, something that Autistic People absolutely hate. It’s loud, there’s so much going on everywhere, there’s people everywhere, it is smelly.
If you as a neurotypical person has ever come home after a long day and just wanted to shut the outside world out and sit in silence for a bit – Can you imagine how much worse this is for an Autistic Person?
Which brings me to the central message of the book.
The question is not how to make Autistic People safe for this world. We’ve tried that ever since Kanner saw his first patient, and started behavior therapy, which included electroshock therapy. (Sometimes humans are just awful.)
Instead, we should think about how to make our world safe for Autistic People.
I mean, we never said ‘Oh, let’s not make this building wheelchair-accessible, let’s instead wait for a cure for walking disabilities.’
It should be the same for Autism. There are some small changes – some supermarkets have ‘sensory reduced hours’ where they don’t play music over the loudspeakers. It can be as easy as that, really.
(And listen, wouldn’t we all prefer to do our groceries without this stupid background music?)
There’s much to be done, but Autistic People, throughout their history, have always overcome the odds. I wouldn’t bet against them.
And next week – we’re reading about American Evangelicals and their struggle to shape America.