I’d like to respond to “Autistic Advocates Clash with Autism Parents at Government Committee Meeting” by saying this: No one, and I mean no one, should be talking about what’s best for me besides me. Yes, my parents know me best in the world, but that doesn’t mean they know better. It perplexes me that we are having this debate still, and people don’t see how ludicrous it is to have an autistic group represented by non-autistics. Imagine the NAACP represented by whites. Recall that image of a group of white men signing legislation limiting women’s birth control… Yet it is totally okay for many autistics to be affected by the will of neurotypicals.
I simply say this: If you want the views of nonverbal autistics to be heard, invite them to the table. Make sure they can access the meeting with the support they need. Seek out autistic people who are nonverbal, and listen to what they have to say. Let your experience of how you raised a person who is autistic be shadowed by the autistic person’s experience of not fitting in a world that thinks he is broken.
Right now, the biggest hurdles we face are the attitudes of community members and the imposed limits of parents. Let yourself abstain from the pity party that seems to be so much a part of the autism community, and believe that your child will continue to develop and gain new skills. Most of all, give them the chance to have what we each aspire to: An independent life, love, housing that supports their vision of what they want, a chance to work, make a decent living, and find satisfaction in their daily life. Besides that, they want to be accepted for who they are or know that if they need support, they can get it. For me, this is what our research dollars should be spent on. Give autistics the majority place at the IACC, and I guarantee you will see these things get addressed in a way that makes sense for us.
Editor’s note: A version of this article was originally published on Niko Boskovic’s blog.