Ever have to start an essay with “What I did last summer was…..”? Goodness, I hope so, otherwise I may have to change my title!
When I approached people at work this year about changing a decidedly abbreviated Autism Awareness Month movement to a very robust and enthusiastic Autism Acceptance Month movement, I wasn’t really certain anyone would want to listen. I mean, plenty of people have loads of ideas, don’t they? I needed to be sure I was well armed with better groups to align with, more current information.
And when I walked in with a month worth of social media ideas and community outreach opportunities, I was heard.
And for the first time in a very very long time, I feel as though what I say- what WE say- actually means something. I feel as though we could in fact help our community as a whole begin to change the narrative from one of fear-mongering to one of strength, inclusion, unity.
So… it’s nearly the end of the month. I’ve photographed perhaps a hundred or so people (I truly haven’t counted) who have heard what I’m saying about understanding and accepting the autistic community. I’ve heard their stories and shared mine, including my own personal move into self-identification. This movement has, to my mind, done precisely what it set out to do: change the perceptions held by the non-autistic community about autism, and provide them new information which may help them be more open to inclusion.
And just because April is nearly done does not mean that my our work is over. No way. Inclusion, acceptance, understanding, support, love, they are needed twelve months of the year. Our work has only just begun, lovies. Are you ready?
Two days ago, we made the two-hour drive to see the specialists who gave us our youngest son’s diagnosis four years ago.
This time, we were going to see if we could get to a more definitive diagnosis for Speedy, because while we felt like we were standing in the right forest, we definitely were not barking up the right tree… it didn’t seem enough to simply classify it as combined-type ADHD, and we’ve gotten nowhere with medications so far.
The psychologist who saw him a few months ago agreed, and at that first appointment he couldn’t even get through the evaluations with Speedy. He is just so… speedy. This time we took a different approach, with me listing off all of the long-term behaviors and sensory needs, social skills needs and anything else that might fit the bill.
After a half hour of working with Speedy, they emerged and he told me that he absolutely felt comfortable expanding his diagnosis to included autism spectrum disorder. Speedy felt it important to interject, “the numbers on the clock are WRONG. They are not first grade numbers at all. You need to change them…I’m watching you….”.
After a moment to hide a smile, the doctor did say that if we were working with the DSM-IV, he’d receive a diagnosis of Asperger’s Syndrome, however that is now all lumped in with ASD under the new criteria.
Occasionally it washes over me that something that was never even on our radar five years ago now utterly consumes us. This life we live, it’s not for the faint of heart. It’s not what we expected at all, and yet here we are. Day after day, tirelessly advocating not just for our children but for all children and adults with disabilities. And you know what? While I clearly wouldn’t trade it for anything, I’m so so tired.