This is an image of two teenage boys sitting on a skateboard. One of the boys is holding a letter board used for alternative and augmentative communication purposes.

No One Should be Talking About What’s Best for Me Besides Me

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.

2 thoughts on “No One Should be Talking About What’s Best for Me Besides Me”

  1. I AGREE with you!! Just wanted to get that out FIRST. Second, I’m wondering if you guys could maybe think about recording your little rants and raves so that people like me who like reading them, but find it VERY VERY irritating to READ…because of my disability. Just some food for thought. Maybe you could talk with Cheryl Green! She is a disabled individual who has a recording about once maybe twice a week! That would be SOOOOOO COOL if you guys could talk with her and she could tell you how SHE does it! Well, that’s all from me! See ya!

  2. It’s no different from an organisation for young girls (or boys), having the majority of its representatives being limited to only fathers (or mothers).

    If you do not have autism, you can’t properly advocate for the needs of individuals with autism. If you really wanted to help then you would listen to your child, and help them to speak for themselves, otherwise you are only advocating for your own needs as a parent.

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