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.
What do a lightbulb, a puzzle piece, and the color blue have in common? Well, nothing actually, unless you’re talking about a potent marketing campaign by an organization who markets autism (Autism Speaks) much in the same way that another organization markets breast cancer (Susan G. Komen Foundation).
It’s March and we’ve made it through another winter full of snow days and illnesses and have come to (almost) spring weather relatively unscathed.
With this warmer weather brings an annual event which makes my eyelid twitch: Autism Awareness Month.
Now, don’t get me wrong- I get the need to raise awareness. Which leads me back to the lightbulb, the puzzle piece, and the color blue. While the marketing is strong, has anyone actually learned anything from the Light It Up Blue campaign, the puzzle piece merchandise, the fundraiser walks? Has anyone not already up to their elbows in autism actually walked away with a better understanding when April slips away and May is in full swing?
I’m going to say NO. Because several years ago, I was among the population of people who knew nothing of autism. Because I knew that people got blue light bulbs and wore their puzzle piece pins, but I had no clue what any of that meant. Because I still talk to families new to the diagnosis who feel lost. And because the organization behind that movement really wasn’t trying to raise awareness- they were (and still are) trying to raise money.
Why are their chosen symbols a problem?
The color blue was chosen because the AS founders had an autistic grandson. They literally chose the color because he’s a boy. That’s the only significance. There is a massive difficulty in obtaining diagnoses for girls and women because the diagnostic criteria only considered this to be something found in boys. Autism looks different in girls and women, and this “blue washing” has basically ignored the girls who are fighting for the diagnosis that will help them obtain supports.
The puzzle piece has left the autistic community feeling as though they are looked at as having pieces missing. This is never okay.
I don’t know about the light bulb, other than it was just a clever piece of marketing at the time.
Now, sure, they’ve reworded their mission statement to sound less inflammatory. They’re under new leadership and they’ve even added two autistic people to their Board of Directors. Two. People. But when you dig a little deeper, and I did, you find that their mission really hasn’t changed. They state in their “For The Record” page (I’m not linking here- you can go find it but I don’t want to send people from my page to theirs) that because science tells us that there is no single “autism” that there is surely no single cure. Yes, they actually state this:
So, here is a short list of autism facts and information, to help with understanding/awareness:
Autism is a neurological processing method, not a disease (ergo, no “cure”)
The social “difficulties” that go hand in hand with autism are often a matter of neurotypical people not understanding the many ways in which we communicate (why we need understanding and acceptance)
Sometimes, behavioral issues come about when people are not provided with all of the information they need or the communication tools they need. This can be solved with the help of teachers, parents, therapists, and friends!
Now, did you need a blue lightbulb profile pic frame for that? Would that photo frame on your Facebook profile have done anything to help anyone else become aware? No.
And frankly, when the autistic community continues to very clearly say “AS is damaging and doesn’t speak for me!”, you really ought to listen.
SO. What now? What organizations can and should we support to further autism acceptance and flip the script from [damaging and evil] to [a world of interests, a strong love for friends and family, and an uncanny ability to be open and honest]?
ASAN works to dispel the myths, present the facts, and to help people move out of “awareness” and into #autismacceptance.
I’ll continue the “who to support” conversation in April, but I really needed to get this off my chest.
In April, and every month, I ask you to join me in moving the narrative in this direction. Do you know someone who doesn’t know anything about autism? Help them to learn, understand, and accept the members in their community who are autistic! Get to know the facts, and not the hype. Understand that this is not a travesty, this is not an epidemic, this is a neurological functioning and neurodiversity (the many different types of ways people process the world around them) is a beautiful thing.
I’ve had several people ask me about telling kids about their diagnosis. I’ll admit, I may not be the right person to ask. I’m so totally matter-of-fact about things, that in our house it goes something like this:
“So, little dude, you’re autistic.”
“A-u-t-i-s-t-i-c. Autistic. It means that your brain takes in a LOT of information and processes it (like a computer does). This is true for everyone, but your brain goes about it a little differently. It also means you might have difficulty with things that are too loud or too bright or involve too many people. And it also means that you may learn a LOT about one particular subject and then teach us all about it. Cool, eh?”
The other day, Speedy was reading the back of my wine glass that we received from David’s Refuge during a respite weekend. “Children with special needs aren’t sent to special parents, they make parents special.” He looked quizzically at me. “Do you know what it means when they say ‘children with special needs’?” He shakes his head no. Then he stops and smiles. “Is it because of my autism?” “Bingo, kid. You got that right.”
So here’s my thought on, well, pretty much everything. Kids pick up EVERYTHING. They hear and see all of it, especially when we think they can’t or don’t. When kids hear the adults in their life talking about their strengths and their abilities, and talking matter-of-factly about the benefits of being autistic, they have a more positive view of themselves than the kids who grow up hearing only about the deficits, the struggle, the “I wish he was never born this way” moments. Don’t get me wrong- we do have the struggles. We do have the nights when I dissolve into a weepy puddle in my husband’s arms- or vice versa- because we just had never signed on for how much work this would be. We do have to have deficit-based conversations at times (when our children are not in the building) because some access to services requires that conversation take place. I end most of our family dinners with my head in my hands.
I don’t want our readers to think I’m all sunshine and roses. No, lovies. I’m coffee and wine. I’m fried cheese and beer. I’m hanging on to the edge of a cliff by my chewed fingernails. I move through emotions so fast it would make your head spin, a fact which has often confused my acquaintances. But it’s all Coping Strategy 101. There is no manual for my children, which is why I write- so that you may have something to go by. A weird combination of Instructional Manual, Coffee Table Book, Bathroom Reader and Comic Strip.
I recently attended a conference where the presenter said “If you’re considering writing a book, don’t.”