Synopsis: Autism has been misunderstood ever since its first description in the 1940’s. Experts describe how this misunderstanding has drastically affected treatment of people with autism, and how schools and other institutions might change their approach and understanding to improve treatment.

Host: Reed Pence. Guests: Steve Silberman, author, Neurotribes: The Legacy of Autism and the Future of Neurodiversity; Dr. Barry Prizant, Professor, Artists & Scientists As Partners group, Brown University and author, Uniquely Human: A Different Way of Seeing Autism

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Misunderstanding Autism

Reed Pence: Forty years ago, experts estimated that only one child in every 5,000 had autism. Those pediatricians who’d ever heard of autism figured that it was so rare they’d never see a single case in their career. But today, autism has become extremely common. One child in every 68 is on the autism spectrum… And a lot of parents are panicked about the odds their child might be next.

Steve Silberman: I completely understand why parents are anxious and upset about autism. It’s because the number of diagnoses has been going up so much in the last 25 years or so. Parents have never been given an adequate explanation of why that’s true.

Reed Pence: Award-winning journalist Steve Silberman is the author of Neurotribes: The Legacy of Autism and the Future of Neurodiversity. He says when parents get no real answers, they’ll often grab onto whatever’s offered.

Silberman: On one side, you have people saying that it’s vaccines or pesticides or GMO or Wi-Fi or any number of aspects of the modern world. And then on the other side, you have these dry public health officials talking about broadened diagnostic criteria and better case findings. It’s not an adequate explanation for a young mother who is searching her two-year-old son’s face for signs of eye contact. So, parents feel they have not been given the whole story and that is true.

Reed Pence: In fact, our misunderstanding of autism goes back almost to its first description in the early 1940’s by an influential psychologist named Leo Kanner. Kanner initially wrote that genetics were to blame, but then backed off. It was another step down the wrong road.

Silberman: What Kanner did was unfortunate. He changed his position and said well maybe there is some genetic contribution, but what really triggers autism is bad parenting — what ended up being called refrigerator mothers. [Then,] Kanner ended up blaming parents, not just mothers, but mothers and fathers for triggering autism in their children. That created a tremendous burden of shame and stigma for families for obvious reasons. In fact, families were told not to talk about their children who were autistic. They were told to put the children in institutions for the children’s own good and quietly remove their pictures from the family album. So, the very impaired autistic kids in the 50s and 60s were put in institutions.

Reed Pence: Silberman says Kanner convinced the world that autism was extremely rare. So rare that the disorder didn’t seem worth looking into. So his theories went unchallenged for more than 30 years.

Silberman: But then in the late 70s, there was a young cognitive psychologist in England named Lorna Wing, who had a profoundly autistic daughter named Suzie. She was asked by the National Health Service to do some research so that they could figure out proper allocation of resources for cognitively disabled children. Instead of waiting for autistic kids to come to her office as Leo Kanner had done, and on that basis speculate that autism was rare, Lorna and her research assistant, Judith Gould, went into this suburb of London called Camberwell looking for children who displayed autistic behavior, and they found tons of them.

Reed Pence: That discovery seemed to validate competing theories about autism developed by the Austrian psychologist Hans Asperger… Theories gathering dust since their development in Nazi Germany during World War II.

Silberman: Asperger discovered autism as a life-long condition that lasts from birth to death and encompasses a very broad range of manifestation, from people who can’t talk, to people who will never be able to live independently, to chatty astronomy professors. In other words, Asperger’s view of autism was very modern.

Barry Prizant: You can go to Silicon Valley and find all of these undiagnosed people working quite successfully, developing software, working on hardware, and so-forth.

Reed Pence: That’s Dr. Barry Prizant, a professor in the Artists and Scientists as Partners group at Brown University, and author of Uniquely Human: A Different Way of Seeing Autism.

 Prizant: I did a talk at Google up at Cambridge and the person who invited me came up to me after the talk. He said not only is this [information] useful in understanding autism, but it also helps me understand a lot of people here who don’t have that diagnosis [and are] incredibly good in some areas, but socially a little bit off, or in some cases, off-putting to people who don’t understand the honesty and directness we often see, especially in more verbal people with autism.

Silberman: We know these people. It’s the absent-minded professor in literature, or other characters from literature who were clearly based on autistic people. However, it’s important to say that just because someone’s quirky or geeky, or even just because someone has several autistic traits, it doesn’t mean they would ever need a diagnosis, or want one. People say to me all the time, ‘Isn’t Mark Zuckerberg autistic?’ or ‘Wasn’t Steve jobs autistic?’ Well, I met Steve Jobs and I don’t think he was autistic. He might have had autistic traits, but it’s very very important when considering the allocation of resources and research and services, that we don’t think autism is just this mild condition — that all it is is being quirky, because autism can be extremely disabling in the absence of adequate support.

Reed Pence: That’s why, when Wing found so many people with autism, she took her discovery and Asperger’s papers, to a group of people who could do something about it.

Silberman: So, then Lorna went to the subcommittee that was working on the so-called bible of psychiatry, the DSM — the Diagnostic and Statistical Manual of Mental Disorders, and said we have to broaden the definition of autism, because it’s too narrow and families that need help are not getting it. She certainly knew what that was like because when her own daughter was diagnosed, her family was hardly able to get any help or resources. She knew what it was like to not have access to special education classes and other resources. So, she swapped out Kanner’s criteria for Asperger’s. That happened in two stages in the late 80s and early 90s, and that’s when the number of diagnosis started spiking and soaring.

Reed Pence: So, it’s not that suddenly so many more kids were developing autism because of some environmental factor. It’s that the rules changed. Many children who wouldn’t have been considered autistic under the old definitions now began being diagnosed. And Silberman says at the same time, something happened in pop culture that brought autism completely out of hiding.

Silberman: Very few people had ever seen an adult who they were told was autistic until 1988, when suddenly everyone in the world had seen one, and that was Dustin Hoffman’s character of Raymond Babbit in [the film] Rain Man. People do not realize how revolutionary Rain Man was because autistic adults were virtually invisible in media. Even many clinicians had never seen an autistic adult.

Reed Pence: But even as autism became a household word, Prizant says a lot of what we learned was wrong. He says to a lot of school administrators, for example, a lot of autistic behaviors simply don’t make sense. They don’t understand what’s behind things like flapping, rocking, and looking away.

Prizant: A lot of behavioral patterns have been seen primarily as signs of pathology, that this is what is wrong when you see a person jump up and down or flap or repeat speech, which is known as echolalia. A lot of patterns of behavior that are seen as autistic behavior actually may be coping mechanisms to deal with a world that is overwhelming, over stimulating, noises are too loud, visual stimuli are too bright to deal with. We see this as people with autism trying to cope with, make sense of, and in some cases, participate in interactions with other people and be able to learn more effectively in the world.

Reed Pence: Prizant says there’s usually a reason behind a child’s behaviors, if only we ask “why” and look at it from their perspective. For example, children with autism often have a very high energy level, and have to release it somehow. So they may jump up and down. Here’s another example.

Prizant: An area that I’ve done research in is known as echolalia — the tendency to repeat things either immediately or to repeat things that were heard previously. Some people with autism will repeat TV commercials or a conversation that mom and dad had at home the night before. In the past, and even presently, some people consider that to be psychotic speech or meaningless parroting. Our research has demonstrated that it’s a part of the language development process for many people with autism. [These behaviors] serve different purposes or functions and may help a person take turns in conversation, or they may say something again so they can process it better, like holding it in their mind the same way we will do that in our own minds, maybe not out loud. So there are many patterns of behavior in autism that have been pathologized. It’s not just that attitude, it’s that what results from that attitude and that is treatment approaches that try to rid an individual of those behaviors just with the goal of helping them look more “normal.”

Reed Pence: However, to a person with autism, what we think of as normal may be incredibly over stimulating, noisy, and chaotic. They have to cope somehow.

Prizant: Many of the things that people with autism are sensitive to and therefore, may respond to in ways that we don’t understand — we are sensitive to similar things, but we have better coping mechanisms. Whereas, a person with autism, for example, who has limited ability to communicate may try to bolt out of the room, young kids may drop to the floor and start rolling on the floor covering their ears. We have many more skills in dealing with those challenges.

 Reed Pence: But if schools are aiming simply for an orderly classroom, those behaviors may seem like the problem. Administrators may even think a child is willfully misbehaving, and try to break them of it. And that can do far more harm than good.

 Prizant: This is supported both by research and even more importantly what people with autism are now able to tell us. We are in a very unique circumstance, compared to a decade or two ago, in that there are hundreds, if not thousands of people with autism who have grown into adulthood who can now talk about their experience. In many cases, they raise concerns about treatments they received that did not understand their experience and treatments that, in the long run, not only did not help them, but in some cases, caused more problems then good, such as post traumatic stress reactions.

 Reed Pence: Silberman says we need to explode the myths around autism and pay a lot more attention to understanding it. He says we’re also doing a very poor job of finding out how people with autism could lead better lives in the community.

 Silberman: We are not researching those things while we chase after risk factors, either in the human genome or in the environment. The investment in research on autistic adults, which, if you think about it there are just as many autistic adults as there are autistic kids. That’s not just something I’m saying, that’s been found in three major studies in the last five years or so. We are not looking at how to make those peoples’ lives better. We’re pouring all this money on these kind of fishing expeditions looking for risk factors. One of the things my book is saying is that obsessing over what causes autism is a form of denial, because we’re not dealing with the fact that there are many autistic people out there and their families need help now. All of that money that people think is going toward the cure is actually not helping them out.

 Reed Pence: You can find out more about Steve Silberman’s book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity, and Dr. Barry Prizant’s book, Uniquely Human: A Different Way of Seeing Autism, through links on our website, I’m Reed Pence.

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