The autism diagnosis first appeared in 1943. Since then, the world has become a much more hospitable, welcoming place for people with autism, thanks primarily to the efforts of family members and advocates who fought for acceptance of their loved ones. But, according to author and journalist John Donvan, the fight to bring autism out from the shadows of society is only half-done.
“Going back 50 or 60 years ago, it was the absolute gold standard psychiatric opinion that autism was caused by mothers not loving their children enough.” This is the world we came from. What kind of world are we heading toward? What opportunities will be made available to the 500,000 young adults with autism who are due to reach working age in the coming decade? These are issues we, as a society, need to consider more seriously.
Finally, another obstacle to a better future comes in the form of autism’s amorphous definition and imprecise grounds for diagnosis. Autism is not something you can just spot in DNA. It’s almost wholly to do with behavior and whether the way someone acts corresponds to the parameters set for the diagnosis. But not enough people agree on what is autism and what isn’t, and that’s caused more problems than it solves.
Donvan is co-author of the new book In a Different Key: The Story of Autism
John Donvan: The world we live in today, in terms of autism, was really created over the last 50 or 60-70 years from the time that the diagnosis was first recognized, which goes back to 1943. And in those intervening years, families had to fight so very hard to change the world to make a place in it for their loved ones because 50, 60 years ago, the world didn’t want them. People with autism were sent away to institutions. They were hidden. They were not allowed into schools. They were discriminated against. They were isolated. And the fact that we live in a world now where things are so different is a result of very hard battles fought by their families, by their parents in particular. And the reason that the past matters, the reason that we want to revive the stories of what those parents did and those families did over half a century is because the job is really only half-done.
We’re in a world now where there are more people with an autism diagnosis than ever before. In a decade, 500,000 teenagers are going to turn into adults with autism and there really is no place for them. We’ve figured out what to do when people are kids with autism. We’ve made a lot of adjustments in terms of giving them education, bringing programs into schools, seeing kids in TV shows. But there’s not very much set up for adults. There isn’t a place for them to live. There aren’t employment opportunities. And with so much left to do, we think we find in the past the inspiration for what to do — that activism works, that it’s worth trying to battle. It’s worth trying to change society’s mind because society’s mind was changed in regard to the kids. But we really haven’t come that far in regard to adults. And so looking at the past, first of all just revives stories of people whose stories deserve to be revived. They did so much; their stories are unsung. But they serve as an inspiration for the job that has to be done in the future, particularly when it comes to adults with autism.
We don’t know what the root cause of autism is. And there have been a lot of ideas put forth over the years. People are familiar now with some of them because we lived through a period of time when it was a very popularly held idea that vaccines cause autism. There are still people who believe that firmly. But the scientific studies that have looked at that have disputed that. Going back 50 or 60 years ago, it was the absolute gold standard psychiatric opinion that autism was caused by mothers not loving their children enough. That is what if you look at the textbooks on autism from the 1960s, if a mother in the 1960s took her child to a specialist she would be told this is your fault. You did this. There’s something wrong with you and you need to be the one who gets treatment because you did something to your child. We have to figure out what’s wrong with you. And there were women who spent hundreds of hours and thousands of dollars going through psychoanalysis to try to figure out how they hurt their kids. That sounds crazy. The vaccine theory has been disputed. Well that leaves us still in a place where actually we don’t know still what the root cause of autism is. We don’t even know if there is such a thing as just autism or maybe different autisms. You know autism doesn’t have any biological markers. You can’t do a cheek swab for it or look at somebody’s DNA and say for sure oh, that’s a case of autism, inherited autism. We don’t have any of that. Autism only comes down to everybody having a general agreement about what autism should be, drawing up a list of criteria, looking at a person, and saying does that person’s behavior match the criteria or not. Well there’s all kinds of room for swishy definition in there.
There are people who are very, very successful professionals, particularly in the sciences, you know. Professors at universities who are brilliant at math who nevertheless now are labeled autistic because the definition is so broad that it includes them. And that goes to the fact that they have strong, real social deficits. They may have grown up being bullied and teased for being isolated and a little bit different and not being able to make eye contact. And in the current definition, those people are now autistic. But so are the people who are autistic under the label 50 years ago. And those are people who have very, very little capacity for language, capacity for independence. They’re unable to dress themselves. If the front door of their house is left unlocked, they will wander into the street, get run over by a car. They will — children will wander over to the next house and drown in the swimming pool. Those kinds of drownings are happening constantly because that kind of autism is so, so very impairing. And I think the one misunderstanding nowadays comes from the fact that we have not really agreed on what we mean by autism, although we all think we have. Right now, autism is an umbrella term for a list of behaviors whose cause or possibly causes we don’t know.