This is my first April as an autistic person.
That’s not true, of course. I’ve been autistic my whole life. But this is my first time getting through “Autism Awareness Month” knowing that I’m autistic. You see, I was officially diagnosed just this April after about a half year of gradually realizing that I was on the spectrum, and as it happens my son Charles also had his autism assessment the very next week (the results are not back yet, but I already know what they will say).I did not plan to get a diagnosis in the rarified atmosphere of so-called Awareness, it just worked out that way. I had actually planned to get Charles taken care of first, but apparently things just move faster for adults than children and I had all three of my psychiatric appointments before he even got through two.
Even if I hadn’t had this epiphany about myself this year, even if I hadn’t gotten the diagnosis, things would have been different for me this April than past Aprils have been, because this is also the first year that I truly understand what Autism Acceptance is. Charles is five and also has been autistic his whole life, and I’ve known that about him for at least two years, almost three. But even as recently as last year, I just didn’t get it.
It’s strange to realize you can be both disabled and ableist, but in the past, I was.
I was vulnerable to loud messages of hate and fear, warnings that autism could steal my child, that autistic people were wrong, damaged, lost, should be eliminated. It’s a little frightening now to realize that so much of that widespread cultural messaging can be traced to a single organization, one which lines its pockets by exploiting people’s ignorance and fear.
In years past, April was hard for me. Autism Speaks and the people who believed their lies succeeded in terrifying me. I didn’t want to lose my beloved child. I believed their lies and was paralyzed with fear.
This year, April is hard for different reasons. This year they can’t lie to me, this year they can’t scare me. I know I’m autistic and I know Charles is too, but I also know now that we are not lost. We are not damaged. We are not wrong. But still, their volume is overwhelming. Their hatred depresses me. Their scare tactics anger me. April is still hard to get through.
I started the month out energized and ready to wade into the fight, armed with links and information, standing tall in a phalanx of brave and awesome fellow self-advocates and allies. But a little past the halfway mark, I flagged, and fatigue set in. I saw some of my autistic friends beginning to seek needed respite from the battle. They took breaks from social media and I’ve stayed, but I’m falling mute. The overwhelm is powerful. It’s been a struggle just to write this post.
How I wish the world could see this and understand it, how ableism is such a battering daily force on autistic people that many of us can’t even keep going and have to withdraw to recover. It gets to be too much, arguing for our right to exist and be accepted as whole people, every single day.
Getting my autism diagnosis was mainly for me, so I can know myself, so I can get the support and understanding I need. But it’s also more than that. An act of defiance, a small rebellion. I claim this diagnosis without shame. Autistic is not only something I am, it’s something I want to be. I’m proud to be. Despite what the world says about us.
The thing is, I’m basically an optimist – I can’t help myself. I believe that fear and oppression work for a little while, but never for forever. History has shown us this again and again – individuals can be stamped out, but the human spirit is resilient, and our essential dignity cannot be wiped out.
Next April, I’ll be back to fight again.