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Thursday, April 30, 2015

A View from an Autistic Person

Sarah Kurchak writes at The Guardian:
When I was finally diagnosed with autism spectrum disorder six years ago, I wouldn’t shut up about it. In part, this was because I, like many autistics, tend to perseverate about the things that intensely fascinate me and, at that moment, there was nothing more fascinating to me than discovering that there was an explanation for all of my sensory sensitivities, social issues, repetitive behaviors and obsessive interests. I also believed in the importance of autism awareness.
But once I started participating in awareness campaigns I found the same overly simplistic and fear-mongering message over and over again: autism is a “crisis”.According to the highly influential charity Autism Speaks (which doesn’t have a single autistic person on its board), autistic people are “missing” – we leave our family members “depleted. Mentally. Physically. And especially emotionally.” Defining our existences solely as a tragedy for non-autistic people is hurtful on a personal level. No one deserves to be told that they are nothing but a burden to the people who love them and everyone has the right to feel like their lives have value.

But it also has troubling implications for public policy.

If autism is only presented as an unequivocally terrible curse that must be “cured” and eliminated, then charities that are primarily focused on finding a cure – like Autism Speaks – will continue to receive the bulk of ASD-related funding and volunteer hours. Even if a cure is possible or preferable (both of which are arguable) these wild stabs at hunting down genetic bogeymen in the hopes of eliminating them in the future do nothing to improve the lives of the autistic people and their caregivers who are struggling with a scarcity of both resources and understanding right now.