When I first started learning about autism and W’s challenges, I read a lot of reasonable sounding information about the deficits that characterize autism and the help that my child would need. In the early days, I considered W’s struggles to be “behavior problems” to be corrected. After all, he was a child freaking out at school and acting in ways that the other children didn’t, distressing his teachers and classmates along the way. (I had a steep learning curve ahead of me to understand that anxiety and sensory issues were the root of his problems, not “behavior.”) I assumed that the problems resided in W and, once he was diagnosed as autistic, everything I read confirmed this. I didn’t know any better.
A few months after W’s autism diagnosis, I first came across the ideas of the Medical Model of Disability and the Social Model of Disability. The Medical Model characterizes the way autism is depicted by just about everyone in our society today. It focuses on the deficits in the disabled individual that should be treated or fixed. When W was diagnosed, I was immediately referred to Autism Speaks’ 100 Day Kit, which is the perfect example of the Medical Model, highlighting all the symptoms of autism and the therapies that are necessary to correct them. In contrast, the Social Model locates the deficits in society, rather than disabled people, and calls for changes in society, as well as accommodations for the individual, so that the individual is able to access more opportunities. In the Social Model, we build wheelchair ramps rather than expecting people with mobility issues to just learn how to take the stairs. The Medical Model would say that my son is disabled by autism. The Social Model would say that my son is disabled by society.
Right around the time I first heard of the Social Model of Disability, I was also working my way through reading the Little House series by Laura Ingalls Wilder with M. I remember reading a description in one of the books of Laura going into town with Pa, and how anxious she was from the crowds and people. Of course, this little pioneer town probably had 100 people, but Laura was nevertheless nervous because her family spent most of their time out on their homestead, with few outings besides church and the one-room school house. Laura did not depict her anxiety in town as pathological or a problem to be solved; she was a country girl more comfortable in quiet places, away from crowds of people.
The more I considered pioneer life in 19th century America, the more I understood how setting makes a difference for when someone is disabled. Would W have been disabled in the same way had he been born in 1875 in Dakota Territory? In a society without large crowds, amplified noise, fluorescent lights, or groups of screaming preschoolers running around in echoing gymnasiums, would his sensory issues have caused him as much anxiety? In a culture where children had lots of physical work and activity, started school at a later age and often didn’t attend for long periods of time (depending on weather, farm work, etc.), had opportunities to learn hands-on skills, and attended highly-disciplined one-room schoolhouses where students worked quietly and independently at their desks, would school have been such a source of stress? I’m not saying that pioneer life would have been ideal, but as a thought experiment, I understood much better how context matters when it comes to disability. W will always be autistic, but by changing the environment and the expectations of people around him, maybe autism wouldn’t have to be as disabling as it is for him now.
Before W started preschool at 4 1/2, he really didn’t have any major problems at home. I never felt like anything was “wrong” with him. Clearly, there was something about school that caused his difficulties. After all, W wasn’t disabled until he went to preschool and was forced to cope with sensory overload and anxiety among the chaos of 4 year-olds. Our simple life that he led at home was manageable for him and he could cope with the demands extremely well.
My thinking and the questions I asked began to change. Instead of, “How can we stop W’s problem behaviors at school?”, I began to ask, “What can we do or change to help W feel safe at school, so that he can succeed there as well as he does at home?”