I'm Not Asking for Autism Awareness. I'm Asking for Acceptance.
I have written my entire blog around the theme of being “Anonymous” because many autistic people feel invisible, unseen and anonymous in the world. Autism is an “invisible disability,” meaning you can’t tell someone is autistic unless you ask them (or know autism very well and are paying close attention).
People have awareness of autism – they know it exists, they know autism is a popular conversation, and its prevalence seems to be increasing. In 2014 it was estimated that 1 in 68 children (1 in 42 boys and 1 in 189 girls) are diagnosed with autism spectrum disorder (ASD).
People know autistic children can have trouble in school and may be prone to meltdowns, but they don’t understand what causes a meltdown. Being aware that autism exists and having acceptance of autistic people are two very different things.
October 10th was World Mental Health Awareness Day – but today I am not asking for more awareness. What I am asking for is understanding, true understanding, and acceptance.
When I am staring at you blank faced because I did not understand what you just said, give me some time to process your words. Sometimes my brain works on a delay. It doesn’t mean I am not listening.
Don’t automatically repeat yourself. I may ask you for clarification. I might have heard you wrong. I’m doing my best. Don’t get frustrated if I ask you to repeat something.
I’m not Rain Man.
I shouldn’t even have to say it – but most autistic people are nothing like Rain Man. Some of us have unique skills and abilities, and some of us do not. No two autistic people are the same, and I can’t go into this without ranting because I get the “You’re nothing like Rain Man!” comment far too often.
Sometimes I have a hard time verbally expressing myself. It is hard for me to come up with on-the-spot conversations or talk about my feelings. Words do not come from my mouth easily – if I am talking to you, my brain is working hard and I am doing my best.
If I am not talking, don’t take it personally. Sometimes, if I am worn down and if I am tired, the words get stuck in my mind as if traveling through glue. By the time the words are ready, they are no longer relevant.
Don’t underestimate me.
I do have some unique challenges, abilities, and disabilities. My brain works differently than most of the world, but I am not “stupid.” Sometimes people talk down to me or talk to me like I am unintelligent. Technically, despite problems with my working memory, I am an adult, so being talked to like a child is extremely offensive.
There will be things I cannot do from time to time and tasks I may find difficult, but I always try my best and do my hardest. On occasion I may ask for more time to complete or learn something new, but in general I tend to be unstoppable once I set my mind to something.
Stop asking me to blend in (and don’t compliment my ability to hide my autism).
I can blend in if I have to, but passing is a lot of work and takes up tons of mental energy. Let’s say I have 12 spoons to get me though my entire day. I only have so many spoons available to me, and passing costs me about one spoon per hour. I need to save my spoons and “passing” is too costly. (Please read “The Spoon Theory” written by Christine Miserandino if you have no idea what I am talking about.)
This world was not made for me. Our school systems teach us to blend in, sit still, and follow the crowd. This push to conform has haunted me all my life, and eventually, when trying to blend in finally failed, I ended up with an autism diagnosis.
Let me be me. It’s been hard for me to learn to accept myself. Asking me to blend in, to fake it and be “less autistic” makes me feel as if the “real me” is not good enough. I won’t do it anymore – nobody should have to feel ashamed of they way they were born.
My Mental Health Awareness Day wish – more than anything I am putting out a deep wish for true acceptance. Being aware is not enough. It is important that we accept people as they are.
Editor’s note: Because World Mental Health Awareness Week is also referred to as World Mental Illness Awareness Week, The Mighty and the author of this post just wanted to clarify: autism is not an illness, nor does it require a “cure.” It is a neurological difference, which is why we raise acceptance for it on World Mental Health Day.
Image via Thinkstock.