Autism, Culture, and Representation

Words are ever-changing; their definitions evolve over time. Although the word ‘cure’ was initially derived from the Latin word cura for care, it was integrated into the world of medicine where it took on a new meaning: treatment. A ‘cure’ was no longer just a method of care; it became a solution to fixing problems.

Because of the complexity of autism, there are many sought-out ‘cures’ desired by many different people. To many people, the answer is simple: find out the cause of autism and eliminate it. While this is a fairly common ‘cure’, there is increasing support for ‘curing’ society instead. Some believe that the problem is not necessarily the medical origination of autism but the social reaction to autism.

A ‘cure’ often implies the need for a change. In the autistic community, a ‘cure’ is a way of ridding a person of their autism and allowing them to be ‘normal’. But what many people forget is that not everyone wants to be ‘cured’. Not everyone wants to be ‘normal’. Although autism has its effects, it remains a part of one’s identity. While people without autism may have many views about this issue, I think that it is primarily important to consider the views of those who do have it. There should be more importance placed on the opinions of autistic people because they should have a say in what is more important to them: putting an end to autism or learning to cope with it.

What most intrigued me about the article on Curebie-ism was the father who feared that his actions would be perceived as a search for a cure. His determination to help his daughter cope with autism was coupled with his worry that she would mistake this care as a desire for cure. I feel that this situation embodies the essence of the discourse on ‘cure’. The test proposed to determine if one is a curbie is also applicative: “If you care whether your autistic child thinks you are a curebie—you’re not one.” If we make a conscious effort to avoid curebism, to not blindly seek a magical ‘cure’, to not ignore the prevalence of autism in today’s society, we will be one step closer to the ‘cure’ for understanding autism as a culture. As long as we recognize the importance of both sides of the spectrum, of finding a medical ‘cure’ but also coping with autism in our communities, we will be able to come together with improving the lives of autistic people as a common goal.

In my eyes, autism has started to remind me about the Pediatric Oncology patients that I spend time with in Child Life, a department that helps children to cope with and understand their illnesses, at Mott’s Children’s Hospital. Although these children are all suffering and fighting against cancer, there are lots of fun ways for them to spend their time at the hospital. One of the activities that we do with the children is called Beads of Hope, a program that allows children to string together beads that represent parts of their medical journey such as their first hospital visit or their favorite nurse. When they’re done, the children are happy to have been able to turn these serious medical milestones into a necklace that they can appreciate.

I believe that this is exactly what the world of autism needs right now. Something that would bridge together the gap between the biomedical and the socio-cultural realms. Something to integrate both and find a balance, a happy medium of contentment with the present but persistence about the future of autism. The ability to accept the immense importance of both autism as a disorder and as a culture. We have the beads; all we need is the string.

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