What was supposed to be a fluffy, feel-good story in the Monday paper left me seething. But hey, it’s like I always say to myself: Don’t get mad, get published!
So here’s a copy of the letter I am going to send in to The Missoulian, letting them know of my dislike of their choice of wording for the headline, and the general sadness of the story:
I was deeply disturbed by the article in the Missoulian titled, “Youngster’s illustrations printed on T-shirts; profits help fight autism”. I was especially upset to find out that Ender’s interesting, lovely illustrations were profiting Autism Speaks.
As an autistic adult, I’ve served the Missoula disability community for four years, speaking with parents of autistic children at the local Children’s Development Center, and acting as spokesperson for the University of Montana’s Neuro Networking Club, a social club for people on the autism spectrum. I found the idea that autism is something to be “fought” to be extremely hurtful, implying that myself and all my wonderful friends somehow have something wrong with us that needs to be exorcised like a demon. Autism is a part of who I am and how I look upon life, I would not trade it for anything in the world. I hope that in the future, the Missoulian is much more interested in not insulting the people and communities they write about in their headlines.
Secondly, I would like to express my sadness that Ender is putting his talents towards benefiting Autism Speaks, an organization many autistic people, myself included, find problematic. One example of Autism Speaks’ troubling practices includes having very little to no autistic representation within their organization. This is radically outside the norm of the rest of the disability community, which pledges itself to the motto, “Nothing About Us Without Us”.
In addition, Autism Speaks has a poor record of actually helping autistic people and families, providing little to no funding for research into how to improve the quality of life for autistic people here and now, prioritizing instead research into causes of autism, leaving many autistic people and their families floundering. Parents of autistic children have also accused Autism Speaks of exploiting and deceiving them in their campaigning and “awareness” projects. Autism Speaks has also, in the past, compared autism to kidnapping, or personified autism as an evil force which steals children, ruins marriages, and turns life into a living hell. This is not autism as I know it.
It really makes me sad that a talented and creative youngster like Ender is putting the profits of his art towards an organization with a very long record of doing more harm than good towards autistic people.
If other Missoula residents want to consider donating money towards helping autism, I’d suggest keeping the money in the Missoula community by donating their time or money to the Children’s Development Center, or the University of Montana Neuro Networking Club, which regularly does projects for improving the lives of autistic children and adults in our community. On a nation-wide level, you can help autistic people by donating to more autism-positive organizations like The Autistic Self Advocacy Network, Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) or The Autism Women’s Network. If you wish to help general disability organizations, there’s ADAPT and The National Council on Independent Living.