Usually, I just rant on Autism Awareness Day. This time, I figured I’d chill out and actually talk about my experiences with autism and why awareness is important to me.
I do have to get my annual Autism Awareness Day requests out of the way first, though:
- Please do not donate to Autism Speaks. The vast majority of their income goes to research so they can eradicate autism, instead of supporting existing autistic people; they use incorrect statistics; they create advertisements that paint autistic people as monsters and burdens; they fearmonger, they lie, and for an organization that calls itself Autism Speaks, they don’t seem to care one whit of what actual autistic people have to say, given that they have no autistic individuals on their board.
- Instead, if you feel the need to donate, please consider ASAN–the Autistic Self Advocacy Network. Nothing About Us Without Us.
- Many blog posts today will spread misinformation, make gross simplifications, be condescending, and generally ignore autistic individuals in favor of talking about their non-autistic family. Please avoid playing into this trend.
- (Also avoid using the puzzle piece symbol, if you could.)
- If you want to learn more about autism, please try to get this information from autistic people, and not solely from families or organizations. We should not be shut out of these discussions.
The below is very personal, and not always cheerful. If that makes you uncomfortable, you probably want to look away. I promise you, we’ll go right back to our regular writing-related ramblings later this week.
Looking at me, people would not peg me as autistic. I stim–usually by rocking back and forth or tapping my foot–but not outrageously so. I can communicate clearly and effectively. I am social, excitable, and have no problems recognizing expressions or moods. Although I’m sensitive to sound and touch, I’m unlikely to have extreme reactions.
(Well, I once kicked my grandmother when she tickled me without warning. Sorry, Grandma.)
All of that means that I’m privileged. Complete strangers won’t look at me with pity or condescension. People will never call me a retard. I’m capable of taking care of myself, and I can manage friendships and relationships.
So why is autism awareness important to me?
Because without awareness–the good kind of awareness, not the trendy kind that focuses on little kids only–people don’t believe that I’m autistic. Family, classmates, teachers, co-workers, government officials, my own doctor. When people hear about the problems I do have, they’ll disregard them, because, hey, look at me! I’m young. I’m normal. Clearly I’m in that group of kids who were misdiagnosed as autistic, and now I’m taking full advantage of it. I’m doing this for attention!
I’m… not doing this for attention.
This is how autism has affected my life: I had my first suicidal thoughts at eight, and had to drop out of high school at fourteen because school–with so many people and classes and demands and responsibilities–meant that I could no longer walk down a street without wanting to throw myself in the path of an oncoming car.
I’m no longer suicidal or even depressed. I like my life. I like myself. I’ve improved by leaps and bounds. I even dig my autism, because for all the bad things it’s caused, it’s done a lot of good things, too. Above all, it’s part of me.
But: I’m on disability benefits, because even working one or two afternoons a week caused so much stress that I struggled to get anything done around the house. I’ve never been able to eat normally, and will gag uncontrollably when made to eat food I can’t handle. I’ve consciously had to train my social skills; I was very proud when I finally learned to say ‘Have a good night!’ to people. (Unfortunately, I blurted it out during mornings and afternoons as well.)
I can talk about how I prefer certain shapes of forks or how I can’t handle certain sounds or how I still can’t make eye contact or how when I get stressed sometimes I’ll slap myself in the back of the neck, but what it comes down to is this: That I’m doing well doesn’t mean I’m any less autistic. Put me back in school, give me a job, force me to eat a normal meal, put me in a situation I can’t deal with, and I’ll go right back to freaking out because I never built up a script to deal with those situations.
Like I said–I generally like my life. I don’t want pity. What I do want is understanding, and that’s why awareness–the good kind–matters. I have learned to adapt to the rest of the world so much, and if there’s things left that I can’t do… please take my word for it. Please don’t think I’m taking it easy on myself. Please don’t laugh in my face and go, “Oh, please, like you’re autistic!” Please don’t tell me a positive attitude is all I need to hold down a job.
It’s not encouraging. It’s not a compliment. And it’s not true.
I am at peace with my limitations, and I wish more other people could be, too.
Thank you for reading this.