Autism Awareness Day – A Few Thoughts from my Spot on the Spectrum

Today is “World Autism Awareness Day”, or – as those of us on the spectrum tend to prefer – “World Autism Acceptance Day”.

Maybe I’ve just done a really good job of culling the herd over the past few Aprils, but I was heartened to see a few positive posts in my feed this morning… from people not on the spectrum. I haven’t seen any “light it up blue” yet, no positive mention of Autism Speaks… maybe this is the year that things finally start to turn around for us.

It may seem like such a small thing, the difference between awareness and acceptance, but it’s actually a big deal.

You see, the “awareness” campaigns to date have usually been hugely negative towards people on the spectrum. The “awareness” has been that of the scare tactic variety, usually to drum up donations. We get compared to cancer, have to watch as these campaigns tell people that autism will ruin their marriages, and more.

This brand of “awareness” goes beyond hurt feelings, it demonizes us in a way that is exceptionally harmful:

– Every time there’s a mass shooting, it’s speculated that the shooter has Aspergers.

– Parents have been conditioned to MOURN their child when a diagnosis of autism is on the table. The child isn’t dead, they just run a different operating system.

– Some parents are so scared of autism, that there is a huge market for snake oil “cures”. People torture their autistic kids in ways that would never be deemed appropriate ways to treat humans. My personal “favourite” are the people who give their autistic children BLEACH, both orally and by enema. Why is it that WE are seen as the sick ones, the ones who need a cure?

– When it comes to justice, we are seen as less than human. If an autistic person commits a crime, they are a “monster”. If an autistic person is murdered – usually by their parent(s)… there is a huge outpouring of sympathy for their murderer. The fact that an actual human child was murdered by their parent is almost completely lost. It’s extremely disheartening to read that another one of us was murdered, and be subjected to “that poor woman!” and comments about how they were so brave/patient/etc to put up with their child for so long.

This morning, I read some information that stated that autistic people who hide their autistic traits “often have high degrees of anxiety or other mental health problems”, from the constant acting. I believe it!

For me, I spent my whole life trying to hide who I was, trying to fit in. While I wouldn’t say I had any sort of clinical depression.. I was far from happy. It is a LOT of work, a lot of pressure, and in the end… how do I put this?

You know the feeling when you’re in a relationship, and you’re doing ALL of the work, all of the emotional investment, and care more than the other person? Imagine that feeling with regards to literally every person you interact with on a regular basis.

That’s pretty much what it comes down to, and it’s exhausting. You are constantly working to present in a way that is deemed acceptable by neurotypical standards, obsessing over any potential misstep, etc… while all of these people aren’t doing anything to understand YOU, to accommodate you, etc. They don’t even KNOW you, they know this facade that you have to work hard to keep up.

My own personal self acceptance was the best thing I ever did for myself. When I stopped seeing myself as broken, when I stopped seeing my operating system as something to hide/be ashamed of, and when I stopped exhausting myself, trying to fit in… life got so much better.

I made friends. Genuine friends, who I actually meshed with. People who liked me for ME.

I met and married an amazing guy. He just GETS me – and vice versa. It’s awesome!

Daily life became less miserable. I stopped trying to live the life of a neurotypical, and embraced the things – gifts – that made me different. I stopped hiding my intelligence (this was mostly regarding dating life!). I stopped trying to fit in, and to do things “the way they’re supposed to be done”. I stopped being ashamed of things like the fact that I need to change careers every 3-5 years, and just went with it – and I am so much happier and more fulfilled for it.

Life is… good.

Life is so much better with acceptance, rather than “awareness”. I was never UNaware of who I was, even before we had at name for it in my mid teens. I just didn’t really get to live well until *I* accepted myself in my mid 20s.

I could rant for hours. I just wanted to post a few thoughts on “awareness” vs “acceptance”. If you truly want life to get better for those on the spectrum, please aim for acceptance.

As far as awareness goes, I am a fan of the “Nothing about us, without us” stance. Don’t look to organizations like Autism Speaks for awareness… look to people on the spectrum. We’re human, and we’re (mostly) able to speak for ourselves. Some of the most beautiful and well spoken writers out there are completely nonverbal.

In closing, let me just repeat a sentiment I’ve put out there a few times: For real “awareness” this April, please Google the phrase “Autism Speaks does not speak for me”. See what autistic people really feel about this organization.

Spoiler: You will not find another organization more despised by the people it purports to champion, than Autism Speaks.

If you would like to support an organization that actually supports the lives of people on the spectrum, I recommend Autism Self Advocacy Network. They are by and FOR Autistics.

Author:Marie Porter

Marie is an award winning cake artist based in Minnesota's Twin Cities. Known as much for her delicious and diverse flavor menu as for her sugar artistry, Marie's work has graced magazines and blogs around the world. Having baked and designed for brides, celebrities, and even Klingons, Marie was proud to share her wealth of baking knowledge in her two cookbooks: "The Spirited Baker" and “Evil Cake Overlord”. Marie has also authored a book about her experiences surrounding the 2011 Minneapolis tornado: "Twisted: A Minneapolis Tornado Memoir"

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