“Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments” ~ NIH (National Institute of Neurological Disorders)
When I first learned about autism, as defined by many organizations, I understood it to be a “disorder,” with “social impairments” being one of its defining characteristics. As autism was also spoken of as meaning someone who did not and could not understand others, and that the very word “autism” stemming from the Greek word “autos” or “self”, suggested a person who had little interest in other people, I assumed this meant my child didn’t care about or want to make friends.
Add to this the unfortunate wording of what so many of our kids engage in – “self stimulation” – which to my ears anyway sounded vaguely masturbatory, and as we live in a society tending toward the puritanical, self stimulation, even to my liberal notions, carried with it a decidedly negative connotation. The word “stimming” is a bit better, but even so, I cannot get away from the sense that this feeds into those negative assumptions about intent and a lack of interest in connecting with others, which is still believed by a great many.
When my daughter described stimming as “self-care” (you can read that post ‘here‘) I was filled with admiration. Self care is such a wonderful way to describe what I see her doing. Self care is not about rejecting others, but instead describes a way of regulating oneself so that one can engage with others. This idea that autism means disinterest in other people, an idea so many have embraced, does not describe my daughter at all. To the contrary, my daughter and so many of my friends who share her neurology care deeply and take tremendous pleasure in their various relationships, just as those who are not autistic do. (That this last sentence is even necessary to write, demonstrates how far we have to go.)
This idea that autism characterized by “social impairments” is something that drives me crazy. It isn’t a social impairment. It’s a complete misrepresentation and misunderstanding of what autism means to those whose neurology is called autistic. My daughter does not lack a desire for friendship or have a disinterest in other people. Unable to often communicate what she intends, constantly distracted by things others cannot and do not necessarily see, hear or feel and a need to move her body in ways others misinterpret, it is no wonder “friendships” present a whole series of issues for her.
So many of the assumptions about autism, based on what non autistic people witness and believe they are seeing and the theories they then develop supporting these assumptions continues. Assumptions, spoken of as though fact, with therapies devised to “help” what is assumed to be true and yet, is not, is based on a false premise. But when we were given Emma’s diagnosis, I did not question these various theories. I, as did so many others, took them at face value, believing that though there was much we still did not know about autism, these beliefs at least, were some of the things we DID know about autism and by extension autistic people.
Oh how wrong I was…
Emma holding Teddy With her String
Emma's Hope Book 