It’s April, and many autistic people online know what that means, although some have been lucky enough to miss it. For those who have been, until now, blissfully unaware. I’m about to reveal the truth, what “Autism Awareness Month” feels like as an autistic person on the internet.
Three Aprils ago, I had just turned thirty and was coming to terms with a recent late autism diagnosis. I had been officially discovered six months earlier, in the fall, and was finally starting to accept myself, weaknesses and all.
The year leading up to my diagnosis had been a tough one, and learning that I was autistic had been a pivotal moment in my life. Like a pool ball, suddenly slammed in a new direction by the cue.
I was left looking back on my life’s events, for the first time understanding where the cue ball had come from. The world made more sense, and other people made more since life made more since – I was autistic!
In the months following my diagnosis, I would find myself going through each of the seven stages of grief. I still remember the early stages of denial, anger, and bargaining clearly, though testing and acceptance brought me the most peace.
In the stages of grief, acceptance is defined as “a gradual acceptance of the new way of life and a feeling of possibility in the future.” In learning, I was autistic. It was also accepting myself as I was, loving every part of me, and celebrating every win while learning to nurture myself when I fall.
I didn’t know how to love myself for many years. Learning that I’m autistic was like living out the story of the Ugly Duckling – learning I was not a broken non-autistic person but a relatively typical autistic one (as typical as one can be in a neurotype as diverse as autism).
In the past, before I knew I was autistic, it was tough for me to have self-compassion, especially in regards to my flaws and faults. I had a very bad, and often toxic, habit of holding myself to an almost impossible standard, especially if I struggled with something other people did not. If I just pushed hard enough, I could succeed in many things, but often at the expense of my health.
“Before my diagnosis, I was aware of autism but lacked understanding of autistic people. I had the awareness that autistic people exist, but like many people had a particular mental picture of what autism was (a stereotype I didn’t fit).“
People often pushed back against that last stage, the stage that was the most crucial to my mental health – acceptance.
This resistance grows in April as the internet fills with comments being directed at autistic adults like “You can’t be autistic!” “You don’t speak for all autistics!” “I know an autistic person and you’re not like them” and to paraphrase one angry mother “How DARE you put a positive spin on autism, you have no idea what it is like to parent an autistic child!”
Three and a half years ago my flavor of autism blog was controversial, because it pushed back against the popular narrative, the one people were comfortable with. I challenged people to look at autism as just another type of human brain – not a bad brain, a different one.
There were other autistic blogs out there, but when you are newly diagnosed it can be difficult to locate them. I started my blog and social media efforts because I had a very hard time finding the blogs, wisdom, and advice of autistic people.
What I found instead were the gloom and doom medical narratives of “charities” and other services aimed at helping the families of autistic people. Resources for or by autistic people were not easy to locate.
In April, everyone on the internet is suddenly “aware” of autism, but they fail to understand or even accept autistic people. This surface-level awareness was not helpful to me as an autistic person. In my case, it was harmful, because it prevented me from understanding the autistic experience in a human way, making it hard for me to see myself in the highly medicalized fear biased narratives that commonly surround autism.
“On the surface, having an entire month dedicated to autism awareness sounds like a great idea. Still, if we dig a little bit deeper, historically, these ‘awareness campaigns’ are often harmful.“
Often these campaigns tend to propagate fear and stigma. The tone is generally something to the effect of “Be aware of autism! Autism is a problem that we all have to fear!” These scare campaigns are frequently used to manipulate parents of newly diagnosed children into unnecessary “treatments” and “therapies” by saying “If you don’t get this therapy, your child will never be ‘normal.'” but normal shouldn’t be the goal.
Autism is a lifelong neurodevelopmental difference. There isn’t a normal child hiding under the autistic child. We are born autistic. We will be autistic our entire lives, and we will die autistic. The ways we cope and interact with the world may evolve and change throughout the years, but we will always be autistic. Being true to that autistic nature, loving yourself, and learning to say “It’s okay just to be me” isn’t always easy, especially when the world is telling you to be ashamed.
I remember my first April after being diagnosed autistic. I was at a place six months into my autism journey, where I was finally starting to believe that being autistic didn’t mean I was a failed version of a normal when April came along, slapping me in the face.
Like magic, starting on April 1st, it seemed as if everyone on the internet suddenly began to care about autism – without paying mind to the opinions or preferences of autistic people themselves.
It’s hard to articulate what it’s like being an autistic person on the internet during “Autism Month.” To me, it feels a bit like a bait and switch. We’re supposed to have a month “for us,” but really, it’s a month “about us” – when autistic voices become harder to find as we are drowned out by the annual wave of non-autistic people sharing their autism stories.
Things are a bit better this year than they were three years ago. The autistic voices are starting to accumulate, and we are gaining ground, fighting to take back our narrative. Unfortunately, autistic life in April is still a bit complicated, and I so this month I ask our community to share their own experiences:
How would YOU describe what April is like for autistic people to a non-autistic person who doesn’t understand the history?
I would say more often than not it’s more of a month to make NTs feel better than helping autistics out. I don’t know, maybe it’s just me. | A. Emmanuel Abua, @thebluemaverick
“You are a plague and we want you gone” That’s how it feels. | Patch Donal, @patchdonal
April 2nd is a dreadful day for me. I’m so sick of the blue onslaught and puzzle pieces. It is a moment where ignorance comes to life. When we speak up against LIUB, we get dismissed and silenced. It truly feels like it’s us against the world. | Ilany Adoptie, @innerworkings85
Like being emotionally and mentally abused with the occasional surprise cupcake when you find one person in a crowd who actually gets you | @CuriosityRocks
The equivalent of mansplaining who and what we are for an entire month, often for the purpose of conning money out people. It’s infuriating. It’s painful. It’s frustrating. It’s exhausting trying to counter all the misinformation. By the end of the month, I’m done in. | @TheAutherSide, theautherside.com
It’s that one time of the year red becomes a good color to me, and I get nervous seeing anything in blue. It gets very loud with a very many misinformed people crowding everything autism. Then it ends, silence, peace returns. We sit glad it’s over, hoping some learned. | Cordelia Hecker, @AutisticHelpsU
It’s so exhausting, it makes me want to curl up in on myself and live in my hoodie for 30 days. It’s like being constantly bombarded with reminders that most people don’t consider you a person. | Claudia Chibib, @trashofthething
This was the first year I got involved and would openly identify to get people to not. It was wild. I Was blocked, had my comments deleted, and messages ignored more than any year before. It was upsetting. | Beekah Madia Russell, @beekah96
It’s like being told it’s your birthday and then instead of you getting cake and presents everyone else does and you get nothing in fact you are expected to just give it all to them and they act like they are giving you the best birthday ever. | @peekaboo_peach