Autistic people are not tragedies. My life
has value and joy
Sarah Kurchak
Autism awareness groups push fear-mongering messages that deny our lives
the value they deserve
Narratives around autism can be harmful, especially those created by awareness
groups. Photograph: Graham Turner
Thu 30 Apr 2015 15.23 BST
T
he existence of autistic people like me is not a “tragedy”. Yet many
autism awareness narratives insist it is because they prioritize the feelings of
neurotypicals (non-autistic people) and dismisses the rest of us as little more
than zombies. And when people buy into this idea, it actively hurts autistic
people.
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 nonautistic 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.
This line of thought also eclipses more nuanced discussions that might help to
make life more manageable for the people who make up this so-called autism
epidemic. If you spend time following hashtags like #ActuallyAutistic and the
work of organizations like the Autistic Self Advocacy Network and the Autism
Women’s Network, a cure is the last things on any of our minds.
We want to talk about autism acceptance. We want people to understand that
everyone on the spectrum, verbal or otherwise, has value and we want to work
so that everyone has a voice, be it verbal, written, assisted or otherwise. We
want to talk about which therapies and treatments are actually effective for us
and which ones are detrimental to our well-being. And we want to know how
we can create an environment in which autistic children are not at constant
risk of wildly disproportionate punishment due to misunderstanding and fear.
This is a particular concern with autistic children of color who face both
ableism and racism, like 12-year-old Kayleb Moon-Robinson, who was
charged with a felony after kicking a garbage can.
Genuine awareness of autistic people, of our lives, our needs and our value,
could greatly improve the lives of people both on and off the spectrum.
Autistic people and our allies just need the rest of the world to stop spreading
“autism awareness” long enough to actually listen and gain some.
Published by The Guardian (www.theguardian.com) under “Opinion”.
https://www.theguardian.com/commentisfree/2015/apr/30/autism-is-nota-tragedy-take-it-from-me