Partway through his research for a new book on autism, journalist Steve Silberman made a mind-blowing discovery. Some of our biggest misconceptions about autism – that it is a modern disorder and an aberration to be cured – are due to a prominent American psychiatrist’s role in burying early research, he says.
Leo Kanner took credit in 1943 for discovering a “unique” and “heretofore unreported” disorder, which he later called autism. In fact, nearly a decade earlier, Viennese clinician Hans Asperger was the first to identify the distinctive cluster of disabilities, which were often combined with innate gifts.
As Silberman details in Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently, Asperger developed individual education plans for autistic children starting in the mid-1930s. The Viennese researcher described the characteristics of autism as “not at all rare,” and suggested that autistic people may have played a vital role in the evolution of science and the arts.
Silberman presents striking evidence that Kanner knew about Asperger’s work all along. For decades, however, Kanner insisted that autism was an exceptionally rare set of mental deficiencies, caused by “refrigerator mothers” who had deprived their children of maternal warmth.
On the phone from Berkeley, Calif., Silberman explains how Kanner’s definition of autism led to a fruitless search for causes and cures. The time has come, he argues, to reclaim Asperger’s understanding of autism as a natural, common and even culturally enhancing phenomenon.
Why did you coin the word “neurotribe” and what does it mean?
For so long, we have considered conditions like autism, dyslexia and ADHD [attention deficit hyperactivity disorder] only as medical diagnoses and expressions of brain development gone awry. Because each of those conditions can also convey advantages, I wanted to invent a word that would allow us to [describe] those very large groups of people without automatically pathologizing them – and also talk about the strengths they have.
Many of the people you describe in your book have astonishing abilities in math, engineering and computer science. Should we think of autistic people as real-life X-Men – genetic atypicals with special gifts?
A profound truth that is embedded in the concept of neurodiversity is that the genius of humanity comes from some of the same sources in our genome as some of the most daunting and challenging conditions come from. So we would be well advised to not try to eliminate autism from the gene pool, as the Nazis did.
How has the legacy of Nazi eugenics – selective breeding to create a “supreme race” – contributed to the notion that autism is a defect to be eradicated?
A lot of the rhetoric that was used by the Nazi eugenicists was about the burden that the disabled of all types, physical and mental, put on society. That kind of demeaning rhetoric is still being used, even by organizations that claim to be advocating for autism awareness. They often talk about the multibillion-dollar burden of autism on society. That’s not the best way to think about people.
True. But not everyone with autism grows up to be a computer genius. What about those who are too impaired to live on their own, or go to college?
The biggest lesson I’ve learned from studying 80 years of autism history is: Don’t underestimate kids on the spectrum when they’re young. People point to [animal behaviour expert] Temple Grandin, who is perhaps the most famous autistic person in the world, and say, ‘My kid is not like Temple Grandin.’ Well, if you’d seen her when she [was] a preschooler who was very destructive and thrown out of all these schools, you might not have thought she was Grandin herself.
Autism organizations have a reputation for infighting over how to spend resources. Where do you think funding should go?
Towards helping autistic people live as independently as possible, and for the families of those who cannot live independently, helping them with services. The National Autistic Society in England devotes something like two-thirds of its funding to services for autistic adults. In America, Autism Speaks devotes 2 per cent.
Well-meaning parents have tried autism cures ranging from raw camel milk to megadoses of vitamins. What will it take to put the autism snake-oil industry out of business?
A lot of the autism quackery is premised on the notion that autism is new and that you have to chelate mercury out of the child’s body, or put them through other dangerous treatments. One of the things I’ve tried to accomplish with this book is to show that autistic people have always been here, and that it’s not a unique disorder of our uniquely disordered modern world.
The current estimate is that one in 68 school-aged children is on the autism spectrum. Is this category now so broad as to be meaningless?
People often ask me if quirky kids are being [diagnosed] as autistic. I don’t think so. Autism is a very distinctive condition at every level on the spectrum. Every person I know who has gotten an official diagnosis does need support and help in meeting the challenges of daily life.
Are we as a society becoming more autistic, and is this a good thing?
People with autistic traits have definitely influenced pop culture and autistic people in the past made scientific discoveries that helped create the Internet. So yes, in a sense, the world is becoming more autistic in ways that benefit everyone, including people not on the spectrum. Now, we can all communicate remotely, and not in real time, using devices that autistic people helped to create.
The Centers for Disease Control tells us that in recent years there has been a jump in the percentage of young people diagnosed with Attention Deficit and Hyperactivity Disorder, commonly known as ADHD: 7.8 percent in 2003 to 9.5 percent in 2007 and to 11 percent in 2011. The reasons for the rise are multiple, and include changes in diagnostic criteria, medication treatment and more awareness of the condition. In the following post, Angela Hanscom, a pediatric occupational therapist and the founder of TimberNook, a nature-based development program designed to foster creativity and independent play outdoors in New England, suggests yet another reason more children are being diagnosed with ADHD, whether or not they really have it: the amount of time kids are forced to sit while they are in school. This appeared on the TimberNook blog.
By Angela Hanscom
A perfect stranger pours her heart out to me over the phone. She complains that her 6-year-old son is unable to sit still in the classroom. The school wants to test him for ADHD (attention deficit and hyperactivity disorder). This sounds familiar, I think to myself. As a pediatric occupational therapist, I’ve noticed that this is a fairly common problem today.
The mother goes on to explain how her son comes home every day with a yellow smiley face. The rest of his class goes home with green smiley faces for good behavior. Every day this child is reminded that his behavior is unacceptable, simply because he can’t sit still for long periods of time.
The mother starts crying. “He is starting to say things like, ‘I hate myself’ and ‘I’m no good at anything.’” This young boy’s self-esteem is plummeting all because he needs to move more often.
Over the past decade, more and more children are being coded as having attention issues and possibly ADHD. A local elementary teacher tells me that at least eight of her twenty-two students have trouble paying attention on agood day. At the same time, children are expected to sit for longer periods of time. In fact, even kindergarteners are being asked to sit for thirty minutes during circle time at some schools.
The problem: children are constantly in an upright position these days. It is rare to find children rolling down hills, climbing trees, and spinning in circles just for fun. Merry-go-rounds and teeter-totters are a thing of the past. Recess times have shortened due to increasing educational demands, and children rarely play outdoors due to parental fears, liability issues, and the hectic schedules of modern-day society. Lets face it: Children are not nearly moving enough, and it is really starting to become a problem.
I recently observed a fifth grade classroom as a favor to a teacher. I quietly went in and took a seat towards the back of the classroom. The teacher was reading a book to the children and it was towards the end of the day. I’ve never seen anything like it. Kids were tilting back their chairs back at extreme angles, others were rocking their bodies back and forth, a few were chewing on the ends of their pencils, and one child was hitting a water bottle against her forehead in a rhythmic pattern.
This was not a special-needs classroom, but a typical classroom at a popular art-integrated charter school. My first thought was that the children might have been fidgeting because it was the end of the day and they were simply tired. Even though this may have been part of the problem, there was certainly another underlying reason.
We quickly learned after further testing, that most of the children in the classroom had poor core strength and balance. In fact, we tested a few other classrooms and found that when compared to children from the early 1980s, only one out of twelve children had normal strength and balance. Only one!Oh my goodness, I thought to myself. These children need to move!
Ironically, many children are walking around with an underdeveloped vestibular (balance) system today–due to restricted movement. In order to develop a strong balance system, children need to move their body in all directions, for hours at a time. Just like with exercising, they need to do this more than just once-a-week in order to reap the benefits. Therefore, having soccer practice once or twice a week is likely not enough movement for the child to develop a strong sensory system.
Children are going to class with bodies that are less prepared to learn than ever before. With sensory systems not quite working right, they are asked to sit and pay attention. Children naturally start fidgeting in order to get the movement their body so desperately needs and is not getting enough of to “turn their brain on.” What happens when the children start fidgeting? We ask them to sit still and pay attention; therefore, their brain goes back to “sleep.”
Fidgeting is a real problem. It is a strong indicator that children are not getting enough movement throughout the day. We need to fix the underlying issue. Recess times need to be extended and kids should be playing outside as soon as they get home from school. Twenty minutes of movement a day is not enough! They need hours of play outdoors in order to establish a healthy sensory system and to support higher-level attention and learning in the classroom.
In order for children to learn, they need to be able to pay attention. In order to pay attention, we need to let them move.
Here’s a follow-up piece from the same author, titled, “The right — and surprisingly wrong — ways to get kids to sit still in class
This article was originally published by The Washington Post