When I was growing up my sister was the “athletic one” and as a result for a very long time I believed I was not athletic. It wasn’t until I started dating a man who had almost no athletic abilities at all that I began to suspect this version of myself was false. It wasn’t that I wasn’t athletic, but more that in comparison to my sister, I wasn’t. These kinds of internalized beliefs about ourselves begin young. I have yet to meet anyone who did not take on some belief about themselves that had nothing to do with who they actually are, but instead was what others said or believed about them when they were young.
With autism there is a whole population of children who are growing up with assumptions about their neurology that will be very difficult for them to reject. When a two-year old is diagnosed and overhears their family, doctors, therapists, and friends speak about them as neurologically inferior it will be difficult for them to not take that on as fact. If they act out in frustration, because what they know and what they are able to say do not match, their frustration is labeled as “challenging behavior”, they are thought to be manipulative or difficult or misbehaving. If they are then punished for these behaviors, the actions they take because their bodies do not do what their minds are telling them to do, or because they are bored out of their minds from being asked to do the same thing over and over, as they grow older and continue to have picture books given to them when they are intellectually capable of far more, I imagine it must only make this perceived belief about themselves all the more painful.
Society has adopted the medical model for autism. It is a neurology seen as deficient when compared to non autistic neurology. It is pathologized because to not do so would mean insurance companies would refuse to help pay for certain therapies that can be very helpful. Things like OT and PT, and in some cases, speech therapy etc would all be deemed unnecessary. But I have to wonder whether there isn’t a better way. After all the cost our children and the Autistic population is having to pay is pretty steep. Their self-esteem is often battered, their internalized view of themselves is negatively affected, ask just about any Autistic adult about their childhood and what they believed about themselves as a direct result of what was said to/about them, even if not in their family of origin, but at school, by other kids, or the doctors they were taken to.
Many talk about how autistic children are trapped and imprisoned by their autism. A few Autistic people have written about how they lived in their own world until they were given the support to communicate. Some have even said they felt imprisoned and trapped by their autism. The image of autism as a prison, is a strong visual image, one that a number of autism organizations have used with great success in drumming up donations and funding. When I read things like that, written by Autistics, it is painful to read. Understandable, but painful. The internalized view of themselves as imprisoned by autism is what others and society has said. But if autism was better understood, if all children were immediately given the help they need to communicate in ways the non autistic population could understand, much of these views would disappear. For a long time I bought into these beliefs, too. But I have come to understand that it is not autism that imprisons my daughter, but society’s beliefs and inability to accommodate her that does.
Em’s new guitar
Emma's Hope Book 