So it’s April. The month where we will see the ‘Light it Blue’ campaign in full effect. The month where we will see the newly reported autism numbers (1 in 50) more times than we’ll be able to count. The month where organizations such as Autism Speaks will attempt to raise awareness about the possible signs, causes, and implications of autism. Yet this “awareness” tends to center solely around the challenges of autism. While autism can certainly present significant challenges for individuals and those around them, that is not the totality of the experience for either the individual or the family, and to frame it only in that light is damaging. What are we so often missing in these “awareness” campaigns? Autism self-advocates and allies would argue that we’re missing out on the most important piece of it: the contributions, stories, and perspectives of people living with autism.
I do not have autism. I grew up as the younger sister of a non-verbal autistic brother. I know well how autism can impact both the person with autism and the people around them. But I also understand that my brother has his own perspective, his own story, his own understanding of what autism is, and how he’d like to be viewed. I have invited him to share it here, and I hope he does. His perspective is different than mine, and part of acceptance means working to understand both the struggles AND contributions of autistics. (And yes, I know that calling people autistics isn’t “people first” language. But I also know, again, that many autistic self-advocates strongly prefer that term to the phrase “person with autism.”)
I think about what comes through my Facebook feed in a month like this about autism, and what it must feel like to be autistic reading them. Colin Meloy speaks about his son’s experience:
On top of that you have kids like my kid — who can read and is verbal — but is clearly very autistic. There is no doubt Hank has autism, and severe challenges that will likely be with him throughout his life — and the last thing we’d want him to see or hear or read is how this thing that is a part of him, part of his identity supposedly makes peoples’ lives a living hell and tears apart families. It’s just awful, and I wish these people would consider that — how a kid on the autism spectrum hearing that stuff would react, and how that would make him feel about himself, in a world where he’s going to have a hard time having people accept him anyway.
Or consider Melanie Yergeau’s journey towards accepting and claiming her autism:
I am now a college professor. I am now nearly three decades into my life. There is no ifonly — there is simply only. I am only me. I am singular, I am autos, I am neurologically atypical, I am a stim fiend, I am stiffer than ironed polyester, I am only, only, only me. I am autistic, and my narrative is one of reclamation and protest, of the Electric Light Orchestra and occasionally misused prepositions. My narrative is parallel and stimmy and developmentally pervasive. Being autistic is not unacceptable, the narrative affirms. Being ableist, however, is.
So where can we read more about acceptance and becoming allies? Where can we find more first-person perspectives of autistics? Where can we strike some balance to the scary way that the word is so often used throughout the month of April? Here are some resources that have certainly inspired me to think more, question more:
Join the Autistic Self Advocacy Network, whose motto is, “Nothing about us without us”…. demanding that publications, research, and stories about autism include the perspectives of autistics.
Try The Thinking Person’s Guide to Autism, both on blog and on Facebook, it has been an incredible eye-opener for me. They offer a critical lens to the dominant story we’re all told about autism, with a strong dose of advocacy.
Follow I Stand with Henry… an advocacy campaign of a 13 year old autistic self-advocate who fought (and won! ) to gain access to his neighborhood school. He now continues the fight for others.
You can read about Amanda Baggs, an adult autistic self-advocate with a strong voice who has recently found herself fighting for her right to life-saving measures in the hospital.
There’s also a great post about how to speak with your own children about autism, in a way that promotes acceptance: 10 Things I Wish Your Kids Knew About Autism
I’m hoping that within the next week, you’ll also be able to read a post here from my older brother about what he’d like you to know about his journey as a non-verbal autistic who communicates through typing.
Those are just some ways to get started. I know each one has made me think much more critically about how we think, speak, and write about individuals with autism.
When I was growing up, we were the only family I knew or had ever even met (unless it was at my brother’s school) who had a family member with autism. Now I don’t know of a family who isn’t at least peripherally related to someone with autism. To me, that speaks volumes about our AWARENESS of autism, but I know that we have a long, long, way to go before we reach ACCEPTANCE. What does acceptance mean? Working to understand autistic people as individuals, presuming competence, channeling empathy, showing respect, and demanding equality for those who have it.
So this month, when you see the puzzles and the blue ribbons and the sky lighting up at night, search for the voices and stories and perspectives of autistic self-advocates and their allies. If they’re not there, ask yourself, the authors, or promoters: why not?