The History of Autism: A Shaky Foundation
To understand something in the present, it helps to look at its roots. The cultural ideas and stigmas that are held today are at least somewhat a product of history. Historically, autism has been a mystery and today there is still much we do not know about how it functions or where it comes from. However, when research first began to circulate surrounding autism, much of that information was inaccurate and ultimately harmed future understandings of autism, repercussions we are still feeling today despite advancements. The history of autism research can be seen as the driving force behind the apprehension parents have surrounding communicating with and building a relationship with their autistic child. As a result of early acclaimed researchers pointing a finger at the parents of autistic children to blame them for the condition, there has since been a culture which fears raising the autistic child and pushes for a ‘cure’ to end a presumed suffering.
Psychologists Leo Kanner and Bruno Bettelheim’s widely regarded ideas have laid the foundation for a problematic understanding of how autism functions and where it comes from. Up until the 1960’s, Kanner asserted the belief that parents are responsible for their child’s autism. Kanner once said in an interview that autistic children were a product of, “parents cold and rational who just happened to defrost long enough to produce a child” (Murray, 54). He believed that the parents of autistic children were cold and distant, thus producing similar traits in the form of their autistic child. Bettleheim held a similar viewpoint, asserting that autistic children “withdraw from the world” as a product of parents who are unable to bond with their child, and that often development was stunted in autistic children due to the parents’ own “inadequacies” (Murray 56-57). Given autism was largely unstudied and therefore not understood, Bettleheim and his work were regarded highly by the public and his opinions were taken as fact (Murray). The blame that was placed on parents by these researchers has heavily influenced the way parents today understand autism, and consequently, the apprehension they feel about building a relationship with their autistic child.
The responsibility placed on parents for causing their child’s autism coupled with the idea that a child is ‘trapped’ within their autism lead parents to push for the cure. The fact alone that blame or responsibility was placed at all reinforces that autism is not a positive presence, as if someone must be punished for its existence. And according to Kanner and Bettleheim, the blame lied with the parents. It is natural for parents to want to fix things for their child, to rid them of any suffering. Since there are inherent ideas of pain and suffering tied to disability and difference, including autism, parents have a tendency to focus on how they can end that suffering and return their child to normal. Murray writes, “For some, accepting that they were to blame was a price worth paying if it meant that their child could be ‘rescued’ from autism” (Murray, 58).The idea held that with therapy, the “lost” child could be “brought back” (Murray, 57). Of course this belief is harmful and inaccurate, as there is no “normal” child trapped within the autism, however the popularity of that notion leads parents to feel urgent about curing their child’s autism rather than trying to understand it as an inseparable piece of their identity.
The history of autism and the belief in the cure have made it easier for parents to focus their energy on who their child isn’t rather than who he/she is. Autism, much like other neurodiverse perspectives, is seen for its deficits first and foremost. Nonverbal and atypical communication is rarely seen positively, but rather as though something is lacking from the individual. This expectation of normalcy hinders parents amongst others from trying to understand autistic communication and build a relationship with the autistic child. Writers and advocates such as Jim Sinclair are helping to rewrite this history and alter the way we understand the autistic child. First, it is especially important that parents understand the inseparability of autism from the autistic child. Jim Sinclair importantly notes in Don’t Mourn For Us, “when parents say, I wish my child did not have autism, what they’re really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead” (Sinclair, 1993). Although these parents might not understand the implication behind their words, it does not change the fact that they are implying they would rather have a ‘normal’ child than try to understand and relate to their autistic son or daughter. Furthermore, it is important that parents are willing to forgo their own expectations of ‘normalcy’ in order to venture into their autistic child’s territory. He notes, “You’re going to have to give up the certainty that comes of being on your own familiar territory, of knowing you’re in charge, and let your child teach you a little of her language, guide you a little way into his world” (Sinclair,1993).
It is impossible to completely rewrite the history that is responsible for inaccurate information and ideas about autism, but we can learn to put what we think we know aside and step into the autistic perspective. Historically, parents have been blamed for what was presumed as a condition that caused their child to suffer and lack normal social and communication skills. There is no question that this past has been a catalyst for the apprehension parents still hold today about connecting and communicating with their autistic child. The belief in the normal child being ‘trapped’ and the cure have made it possible for parents to focus attention on autism as a deficit rather than a benefit. However, with more insight into the autistic perspective as shared by those on the spectrum such as Jim Sinclair, parents may be able to take agency and find the courage to meet their child where they are at. As noted, difference is not an “impenetrable wall” (Sinclair,1993), but communication can happen and relationships are more than possible.
Works Cited:
Murray, S. (2012). Autism (The Routledge series integrating science and culture). New York: Routledge.
Sinclair, J. Don’t Mourn For Us. Autism Network International newsletter, Our Voice, Volume 1, Number 3, 199.
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I pledge, Madison Moyer.
