My mornings are pretty consistent – I wake up for the several alarms I’ve set neurotically, hit the off button, and browse on my phone to stay awake while snagging a few more minutes nestled in my comfy warm bed. While checking Twitter this morning to see if ODAAT was finally picked up by a network (fingers crossed), I saw so many posts for World Autism Awareness Day. So many puzzle pieces and #LightItUpBlue, so little time. You might also know that April happens to be designated National Autism Awareness Month. As an autistic woman myself, I felt compelled to set the record straight about some things that I take issue with when mostly well-intentioned people try to support autism as a cause. It’s not all bad, but there’s definitely some bad vibes that April gives to #actuallyautistic people like myself.
When you’re drafting a post to social media, you might spend some time thinking about hashtags, which filter, and definitely if you’re anything like me which gif to use (still not solid on how that’s actually pronounced). So why wouldn’t you spend some time thinking about the language you use on social media? I can’t tell you how many times in April I see people using language that’s often considered hurtful to both the autism and disability communities. Phrasing like handicapable, differently-abled, and special needs or calling people with disabilities inspirations or courageous. My biggest issue is with what is commonly referenced as inspiration porn. I recently discovered ABC’s Speechless, which is an amazing show that actually features genuine disability representation and needs to be renewed ASAP!! They hit the nail on the head in one of their episodes as they explained what inspiration porn is.
No Assembly Required
The imagery associated with autism of the puzzle piece may appear innocent, but it carries an implied meaning that can be hurtful to autistics like me. Think about the last time you tried putting together a puzzle. You had to look at the box to see if the pattern was even remotely close, scavenge for the right piece for a particular spot, and sometimes slam it into place before you realize that there was a missing piece. People are not puzzles!!! The analogy of a puzzle piece – especially when paired with that saying “until all the pieces fit” – implies that people on the autism spectrum need to be fixed or that something is wrong with us. The sooner we ditch the puzzle piece, the sooner we can change the narrative of autism as being something to fix when really it’s society that could benefit from changes.
Every April brings a wave of blue everywhere, which seems cheery enough, but again there’s an aspect that might not even cross your mind. When you think of the color blue, there are several associations you might make from raindrops to a beautiful clear sky. Of course, there’s also the association seen at many gender reveal parties with boys traditionally being represented with the color blue. When attached to something like autism, it wipes out the existence of other autistic people who identify as female or another gender identity. In 2019, we need to do better in not only recognizing but supporting all autistic people regardless of how they identify in terms of gender, race, and sexual orientation.
Ditching Autism Speaks
Have you ever had that one acquaintance that’s always saying something really messed up? Enter Autism Speaks. For many well-intentioned people, Autism Speaks is the organization that you might give a donation to in April, but peel back the curtain and see the horrible ethos of the organization which ascribes to what is referred to as the medical model of disability. It essentially aims to fix or cure people with disabilities including autistics through medicine. In the case of Autism Speaks, their goals are made into reality with research for a cure and support of prenatal testing which aligns itself with other modern eugenics practices. Let me say emphatically: I and fellow autistics like myself – we are not broken and we don’t need to be cured!! They are an organization that not only fails to represent the support needs of autistics directly but is perfectly okay at the prospect of erasing autism and autistics like myself off the map. This op-ed published four years ago from The New York Times written from a parent’s perspective, while dated still provides a great perspective of the issue.
The Autistic Self Advocacy Network (ASAN) also gives some thoughts in a prepared pamphlet on the ills of Autism Speaks’ practices as well as providing some helpful guidance on where to donate instead that will actually benefit people on the autism spectrum and not an organization participating in mass character assassination of autistic people. I leave you with this thread from NYT YA author Marieke Nijkamp that pretty much sums up my feelings to a T. I hope you enjoy the rest of your #WorldAutismAcceptanceDay and as always, I’d love to hear your thoughts!!