Every morning I read new stories on The Mighty. I like to start my day out with my peers, a group that I do not often find in “the real world”. Other invisible Autistics, like Karen Harper, contributor to The Mighty.
This morning’s post talks about a difficulty that many Autistic people and people with Asperger’s face.
Functioning labels cause problems for everyone.
“Low functioning” Autistics may be extremely intelligent but have difficulty verbalizing their needs. People often underestimate this group.The word “low” seems to suggest something lesser. Nobody should be told that they are broken. People should not be made to feel devalued.
Carly Fleischmann is an amazing example of a woman who everyone under estimated. She learned to type and was finally able to communicate with the world. She explains in VERY clear detail what it is like to be a non-verbal Autistic. Carly is extremely intelligent, brilliant, and funny. She even interviewed Chaining Tatum on YouTube. It was a huge success.
In her book, Carly’s Voice: Breaking Through Autism, Carly talks about the frustration she had when people thought she was not smart.
“High functioning” Autistics have a different problem. People often dismiss them as being too smart to need help. When we fowl up social engagements people often chastise us for our lack of abilities, telling us we are not trying hard enough. They don’t understand that we really are doing our best – with GREAT effort and energy.
It hurts to be told over and over again that your best is not good enough.
I relate very strongly to what Karen has to say because I have often been told very similar things.
Autism is an invisible disability. Some behaviors I have may give clues but unless you watch closely and know Autism well, most people have no idea.
Nobody ever wants to hear about the bad days. You can’t talk about all the things that bother you throughout the day or people will say you complain too much.
People don’t believe you when you DO explain yourself either. They accuse you of being weird, negative, making excuses, or being lazy.
Eventually you learn to keep things to yourself. Suffering silently, not wanting to make waves.
Passing – you become an expert at pretending to be normal, but this activity is costly to your health and self esteem. It drains your energy and makes you want to hide from the world.
If you are good at passing you are labeled “high functioning” because you can hide all of your suffering. You are able to make “normal people” feel comfortable by appearing “less Autistic”.
Congratulations – you are a huge fake – YOU are “high functioning”!
Does anybody else feel like this is the wrong expectation for the world to have?
I don’t want to fake it any more. I just want to be me, out in the world, fabulous, and breaking stigmas.
“Normal people” gave us these high and low functioning labels. They explain how we fall on their scale of “normal”. We need to speak up against these labels that do more harm than good.
Some day I dream to live in a world with true understanding and Autism acceptance. Unless we all start to write, start to speak for ourselves, I fear this will never happen.
People naturally push off what they do not understand – it is our job to help “normal people” understand us.
Yes, I am “high-functioning” enough to call agencies and my insurance company. Yes, I can hold down a job and a relationship. That doesn’t mean I don’t need help with certain things.
I don’t wear my “high-functioning” label as a badge of honor or take it as a compliment. Being “high-functioning” means I’ve learned to cope with my challenges on my own when help should have been available. Being a “high-functioning” autistic person has contributed to my “high-functioning” depression because I can easily pass as “normal” in society. My challenges are, for the most part, hidden.
And ironically, being able to “pass” is just what society wants us to do.