And yet again, it’s World Autism Awareness Day.
I’ve written many different types of posts surrounding this event over the years. Some posts have focused on the progress made by my kids. Others have centered on the community at large, and the strides we need to take to have more acceptance of each other. Some have just been a plea for better acceptance of autistic people in general.
But this year I’m going to follow up on commentary I’ve seen in the community questioning the title of this day, specifically on the National Council on Severe Autism Facebook page. A suggestion was made that we, instead, need to call this Autism Action Day.
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And I couldn’t agree more.
Of course, we still need acceptance and awareness always. Just in my own town in the burbs of Jersey I have seen so much more acceptance of my son over the fifteen years we’ve lived here, mostly by people out in the community. It has been so gratifying to witness more smiles than stares when we go out, and while I’ve really become immune to the latter, it is still great to see that kindness radiating from people we don’t even know.
But Justin is getting older, will be a ripe old eighteen years old in a matter of weeks. In three years his beloved school will no longer be an option for him. The “cliff,” that reference to the cessation of services for autistic individuals after the age of twenty-one fast approaches. I will tell you that I am planning and plotting already, have formed a group of women who along with myself are dedicated to creating a great life for our sons beyond twenty-one. I know I need to take action for this dream to come true.
He deserves to have a great life too, one on his own terms.
There is so much contention in the autism community, and I fear that we are getting bogged down in arguments over whether or not parents are ableist, whether high-functioning autistics know better than parents what’s best for their severely autistic brethren. I read arguments between autistics and neurotypical parents, and yet to date I’ve haven’t seen one mind changed, one perspective altered. And while we all need to voice our opinions, I believe it’s time to focus our emphasis on action, not words.
There needs to be better day programs for our autistic adults.
With 500,000 autistic children becoming autistic adults in the next decade we need safe, affordable housing for them all.
We need meaningful employment for those who can work.
We need better trained and better paid caretakers for our children.
All of these things and more will require action- laws to be passed, work to be done to achieve our goals.
It’s time for all of us to do whatever we can, to take action to bring about these dreams. I know I’ll be doing my own small part, not only on World Autism Awareness Day, but until my son’s dying breath.
I vote for a change to World Autism Action Day, and I plan to live up to it.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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