We hear alot about autism but chances are most people have only a faint idea about it. It's history is littered with misconceptions, misdiagnosis and mistreatment of people so let's start at the beginning.
The term autism ( meaning "the self" in Greek) was used in the 1940's by Dr. Leo Kanner to define the condition of the children he treated. His definition was very narrow, insisted it started very early and required intense intervention and never changed. Meanwhile, Hans Asperger, a pediatrician in Vienna, described autistic like children in a 1944 paper that was discovered in 1980 by researcher Lorna Wing (who coined the term).
Asperger's Syndrome got bundled with other similar symptoms in the Diagnostic and Statistical Manual (DSM) and the umbrella term Autism Spectrum Disorder (ASD) was born.
Despite decades of research and study there is still no universal agreement on a diagnostic criteria or a general theory of what causes it. Everything from "refrigerator mothers", vaccines, diets, to genetics have been offered but without much (or any) evidence to support the hypotheses. Autism, it turns out is a very subtle thing to spot.
Until recently, diagnosis and treatment focused on boys more than girls. There's a lot of social politics about how a child develops. Boys are expected to noisy and active, if they aren't, parents and doctors rush in and try to fix the problem. Girls are supposed to be shy and introverted-an endearing quality. (In my case it was Lisa is a temperamental pain in the ass- not desirable behavior for a child.)
"Autism is much tougher to spot in the girls," said Danuta Bulhak-Paterson, a clinical psychologist who wrote the book, Aspie Girl. "They have a very different presentation from boys on the spectrum." When they are diagnosed they are offered therapy and education geared to males because the data derived is almost entirely from studies of males. Females are diagnosed later due to misinterpreting or missing the symptoms.
"Everything we thought was true of autism seems to only be true for boys." says Kevin Pelphery a professor at the Yale Child Study Center. “Almost overnight, we went from a couple of people talking about sex differences to everyone studying this as a major factor in the field,”
Even he did not recognize the condition in his own daughter, until she was diagnosed at five. *
What most people know about autism they gleaned from movies, TV and a few articles or interviews. The image from Rainman for example, is an exaggeration of savant behavior for dramatic affect.
Among the most common myth is that autistics prefer to be /play alone. No, in fact a significant number of ASD desire social interaction but find the nuances of socializing difficult and therefore avoid it. Another one is that autistics lack empathy. ASD are often accused of not responding or showing emotion correctly, causing confusion and horror to the neuro typical. Those with ASD often feel too much. Overwhelmed by emotions, they will shut down as a way to contain or control them. Don't confuse lack of response for lack of feeling. People in shock often react that way and can be misinterpreted as apathetic.
Many parents were told that their child is a lost cause. They will never progress past their infantile state and might as well be institutionalized. Numerous books have been written about the advocacy of parents who knew their kids aren't retarded vs. the completely wrong assumption of experts. As many researchers discovered, autistic behaviors can be modified or reduced with early education and therapy. Many autistics have partners, graduate from college, marry, have children and careers.
The more ASD is studied the more we learn that it's a complex wiring of the brain not a defect.
*Sources: Scientific American "Autism-it's different in girls" Maia Szalavitz March 1, 2016
The Atlantic The Invisible Women with Autism Apoorava Mandavilli Oct 22, 2015)
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