By Jessica Grey
April and I are not friends; I often find myself frustrated and struggling with my self-worth in April. You see, I am Autistic, and making my way through Autism Awareness Month is usually a pretty emotionally challenging affair. More often than not, in an effort to maintain my positive, but fragile, relationship with myself, I have to take a step back from social media while millions of well-intentioned people share articles and pictures and inspirational stories to promote autism awareness. I even find myself shying away from some public spaces as so many stores and restaurants have jumped on the autism awareness bandwagon.
So many of the sentiments shared throughout this month revolve around how brave and exceptional the family—and, if the Autistic person in the story is really lucky, the friends or employer—must be to live with an Autist. Now, I’m not saying that it doesn’t take some level of bravery for my friends and family to have me in their lives. I am not a picnic to be around all of the time, but neither is anyone else; my not being a never-ending ray of sunshine is due to the fact that I am a whole person whose wholeness includes being an Autist, not only because I am Autistic. Though I am usually capable of reiterating this distinction to myself, I often walk away from Autism Awareness Month feeling rotten and as though my existence is a burden to everyone around me.
This narrative that pervades Autism Awareness Month has been shaped by many things, but one of the most notable is the platform of Autism Speaks. While I’m not going to sit here and spend thousands of words bashing the organization, I would be remiss if I did not mention the frustration with which I, and many other Autistic individuals, view Autism Speaks. Contrary to what their name seems to indicate, Autism Speaks almost never listens to or promotes what Autists have to say; in fact, Autistic people are often shouted down and silenced. Their leadership does not include a single Autist. Further, their push for “autism research” and “a cure for autism” has led them to support policies that endanger public health and institutions that abuse Autistic people. Moreover, they don’t even really assist the community they claim to speak for, as they allocate a measly percentage of their budget to actually helping Autistic people and their families, while state and local services and organizations that could provide Autists and their families with adequate resources are unable to do so in the face of repeated budget cuts.
The narrative proffered by Autism Speaks—that autism is a disease that burdens the allistic people of the world—has shaped the discourse around autism for years. This is a large part of why Autism Awareness Month is such an emotional mine field for me and many other people. Thankfully, there are other narratives out there and they are gaining traction: Shade Ardent’s Life, Before and After published here on Sweatpants & Coffee a few weeks ago is a perfect example—and if you haven’t read it yet, I hope you will; so much of my own experience is reflected in that piece, it made my heart swell. So, in an effort to join the ranks of those trying to change the narrative around autism and move the discourse from a largely fear-based “awareness” to an affirmative “acceptance,” I want to shine a light on some of the forces of good where it comes to autism.
One of the resources I’ve repeatedly come back to on my journey of self-discovery and learning to love my Autistic way of being in the world is Thinking Person’s Guide to Autism. TPGA entire mission is to collect and disseminate comprehensive information that is well-researched and thoughtful, while also affirming that autism acceptance is “not merely noble but necessary.” Moreover, TPGA works to raise the voices of Autistic activists and authors because, as it is put it in their mission statement, “Thinking critically is one of the most important actions we can take for those we love, and for ourselves. Thinking critically starts with listening critically.” Along with the wide variety of thoughtful essays published on the site, Thinking Person’s Guide to Autism also maintains a curated list of resources that ranges from books to parenting blogs to local and international organizations. They also have a very active Facebook page you can follow, which I really enjoy because I see thoughtful articles and discussions in my feed regularly.
The Autistic Self Advocacy Network has also been a tremendous resource for me. ASAN is a non-profit that was established as a national grassroots organization that works to advance disability rights with regard to autism. Run by and for Autists, ASAN actively works to, as the name suggests, support self-advocacy of all kinds and to ensure that Autistic voices are heard in public policy debates and the struggle to gain the resources and accessibility options necessary for Autists, as well as all others in the disability community. In addition to the activist work ASAN does, the network also highlights a range of publications on Autistic culture and self-advocacy, as well as their regular reports, issue briefs, and position statements. ASAN offers a wide variety of ways to get involved, from local chapters to simply sharing your story or making a donation: members include Autists, professionals who work with the Autism community, friends and family, as well as folks involved in disability rights work who want the movement to be as inclusive as possible.
I only recently discovered Ollibean, but I have been rather impressed with their platform. Ollibean, a cross-disability-oriented site that, while not exclusively dedicated to the Autistic community, is all about the acceptance and empowerment of the disability community, including Autists. Though the site is largely geared toward parents and family members of disabled people, they absolutely won me over with the last paragraph on their “About” page: “Ollibean is a positive space to connect and share resources to learn how to best support and empower our disabled children in a world that is not yet fair and inclusive. We do this by learning from and amplifying the voices of the experts on disability—disabled people.” The site curates a wide range of articles, lists and information about resources, and videos meant to inform and serve as a call to action.
Though I’ve only listed a few here, there are so many other treasure troves of information and alternative perspectives from Autists themselves out there; the internet is a remarkable resource. Google “neurodiversity” or “autism acceptance” and in fractions of a second there will be myriad voices just waiting to be heard. Unfortunately, thanks to groups like Autism Speaks and the unnuanced discussion of autism-as-disease, I think people are plenty aware of autism but not enough are aware, let alone accepting, of Autists—unaware of all these voices speaking for themselves. I am tired of hiding from the well-intentioned but, ultimately, hurtful Autism Awareness Month. I am Autistic and I am 100 percent here for myself, for Autists and disability self-advocates, for those organizations that want to hear us, and for a full scale push to turn April into Autism Acceptance Month.
And, before I go, I just want to say this for anyone and everyone who needs to hear it: your brain is beautiful.