Autism Awareness Month, the month of April, is exhausting. I am autistic. I am also the parent of an autistic child. I am not, however, an “Autism Mom.” I am just an autistic person raising another autistic person.

I can’t speak for other autistic people, nor would I want to. I am not a racial minority, and I’m not nonverbal–most of the time. So I definitely cannot speak to those lived experiences.

But here are some blanket autism facts about all autistic people, that a lot of allistic people often aren’t aware of:

  • Autistic children grow into autistic adults. Hi, nice to meet you. I’m Liz, an autistic 38 year old.
  • Autism is not an intellectual disability itself, though it can cooccur with intellectual disabilities.
  • Autism is genetic. “80% of autistic risk” and I hate how this is worded “is traced to inherited genes.” (And that’s a stat from Autism Speaks–who I loathe, but you can google it. There are other sources that say pretty much the same thing. Some of them are medical journals. But I don’t have the attention span to go through those right now.)
  • Autism is not a spectrum that everyone is on. It is a spectrum only for those of us that are autistic, because we all present our autistic traits differently. Not everyone is “a little autistic.”

So why is Autism Awareness Month so exhausting for me an many other autistic people? Most of us are Autistic Advocates all year round just by existing. However, Autism Awareness Month is a special kind of hell presented by friends and family who are well-meaning, but can still be harmful. I have seen so many of my peers, professional artists, donate paintings to, or take part in, fundraising events raising money for autistic people. Yet, there are no autistic people involved in the event or the organizations that they’re raising money for! Then I go to the websites of the organizations and they usually have totally cringe language like autism is a thing that you can get and how it is so difficult for families who are “inflicted with autism”. Gag me.

Then I see celebrities who I respect and admire giving money to organizations that were started by a father who once said that he wished his autistic child had drowned. (Here’s the research for that.) And then there are people sharing puzzle pieces and fundraising efforts by Autism Speaks–a hate group more than anything. (I’m really way too tired to go into all of that. There is a great article by the Washington Post about it, though. You can read that here.)

I am asking for one thing from the people who want to be involved in Autism Awareness Month and be supportive of Autistic people. Before you share or post or get involved, do your research. Make sure the organizations that you’re working with and/or promoting are actually run by, and are actually run for, autistic people. Check the language, check who is on the board, check whether the wording is centered around the parents or is actually centered around the autistic people.

Love,
Liz Zook
@thepopartgirl
(name might soon be changed)