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?
So, it’s April. For many people, it’s Autism Awareness Month. For all too many people, there will be blue lightbulbs and puzzle pieces everywhere. And for those of us who are aware of their meanings, it can be the hardest month to deal with.
For our house, and happily for a growing number of people, it’s Autism Acceptance Month instead. And here’s why.
So many people have written on why the blue is bad, why Autism Speaks is a bad organization, why the puzzle pieces are such a horrid representation. There’s not really much point in me adding my voice in to the choir of voices all standing up and shouting WHY WON’T YOU HEAR US??
So I’ll take a different approach, and write about our journey through the last several Aprils.
April 2014. As far as my husband and I knew, it was our first April as Parents Of An Autistic Child (or POAAC if you want to be that way). In actuality, we’d always had an autistic child, but it was our first April since he received his diagnosis. Like so many parents, grandparents, aunts and uncles before us, we had been funneled towards Autism Speaks by our Early Intervention case worker, by our developmental pediatrician, by well-meaning friends.
We saw the blue lightbulbs and the puzzle pieces and did what a lot of people do: we adopted them as a way to represent what we were only just beginning to figure out.
I went to a tattoo artist and had him create what I thought was the perfect puzzle piece tattoo.
We changed our profile photos every April to “Light it up Blue” photos.
And then, slowly over time, we began to read more things written by people who are autistic. We began to read about how Autism Speaks marketing very powerfully sells the idea of blue and puzzle pieces (though they weren’t the first to use it, that belongs to an organization in the UK) and uses it to get people to send them money. But money for what? Well, that changes from year to year and with new leadership. Ultimately I see them as an organization for the as-yet-uninitiated. It can be a landing spot for a few interesting pieces of information, however I don’t recommend spending too much time there.
Eventually, we found the Autistic Self Advocacy Network and found that the voices there are all autistic voices. That they speak frankly and factually. That they detail out the supports that are still needed, the ways we can help, and the ways not to “help”. Over the course of the last few years, I have spent countless hours making sure that I read voices of people who are autistic, rather than the voices of people speaking for them. Nothing about us, without us. It’s important.
April 2018. By now I have realized why my children are autistic- it’s because I am too. And that’s awesome! We totally get each other, and we can teach them how to be advocates not only for themselves but for anyone who wants help advocating. Instead of puzzle pieces, our symbol is the infinity symbol in a full spectrum of color, representing neurodiversity.
Instead of blue lights, we use regular light bulbs because who can see anything by blue light anyway? I mean come ON that is the oddest thing ever. In all seriousness, though, autism is literally a spectrum. It’s IN THE NAME. So why represent only one color? (By the way, Autism Speaks, when asked about the blue, actually told me that it’s because the founders’ grandbaby is a boy with autism)
So here’s my short list of how you can help.
It’s crucial that you talk with people on the spectrum to find out what is important to THEM. Give people the time they need to answer a question. Don’t force eye contact (we can do it, but it doesn’t come naturally and for some of us is physically painful). Ask us about our interests, tell us about yours- maybe we have something in common. Learn to recognize our overload signs and give us a quiet space to regroup if we need it. Be. Patient. Help us to push for better representation in government. Help us get the supports and services we’re asking for. Don’t STOP helping when April ends and May begins, please.