This morning I opened my local newspaper to find the above statement in an advertisement for an "Autism Awareness" event. The fundraiser is being hosted by two non-profits in our community, one of which has the words "Autism cure" in it's name. While people will come out to play games and walk in circles for the devastation that is my family, I find the pity party itself to be mightily discouraging. This is where my children have to live. We walk down the street in a city that cannot comprehend human dignity and that portraying someone as an annihilation is wrong. It's so close, it is home. Not us though. Nope. We are not your Autism devastation story.
When my first child was diagnosed with Autism, I probably could have described my state of being as devastated. I was certainly afraid, definitely sad, and I'll explain why. I felt pain because I was taught to do so. Not only was I taught to fear disability, but I accepted that script for true. Society, from our streets to the Eiffel Tower, instructs us to dread the Autistic child. Claims of epidemic, descriptors like devastating, spreading lies about "cures" just as diseases themselves spread, these things hurt my Autistic children. They hurt all Autistic people. That negative mentality hurt me as a parent too. Every time someone promotes the idea that Autism is a tragedy, mothers like I once was, are lead to pain.
How we as a society welcome or exclude diversity, and disability is absolutely part of our natural diversity, reflects our own limitations. Pitying my children might come easily because that is what we have been taught to do, but it doesn't dissolve our personal responsibility to treat others with compassion. I feel sorry in reverse. It's a shame that Autistic people are not welcomed. It's a shame on us. My children are offered segregated educations, therapies which demean them as robots to be programed, and pity parties disguised as "awareness" campaigns. They deserve inclusion, support, and respect.
If the hosts of this event truly wish to help, they should not characterize the very people they claim to serve in this manner. Good intentions and a good cause do not make degradation permissible. Unfortunately, they are following the lead of many larger organizations who also use fear and tragedy rhetoric to collect funds. Though the money gained in this event appears to be going to a relatively decent cause, the "help" is backhanded. We do not need our communities to feel sorry for us. We need our communities to accept Autistic children and adults because they are citizens, because they have something to contribute, and because they are valuable human beings. Everyone is valuable.
Once I was able to refuse the devastation script for how our lives should go, things weren't frightening or sad any more. My children and I were able to bond on a level that had been inhibited by my fears. I learned to look at their strengths instead of deficits. I realized that they needed support, not to be forced into conformity. They have done nothing but thrive. That is our story. It is hard, I won't deny. Raising Autistic children is hard. It's hard to know that those in my neighborhood think nothing of putting us down. They call it "help" when they call us devastating. It's hard because all good parenting is hard. We rise to the occasion of our children though.
My children, my family; we are not your Autism devastation story.
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