CW: Ableism, mention of suicide, sexism, hate symbols, sexual assault
It’s that time again: Upon the end of March the world will swarm with blue lights and puzzle pieces, dedicating the entire month of April to Autism Awareness Month. Depending on your corner of social media, you will probably see a similar flood from Autism parents and heartfelt stories about the challenges of raising a child with autism. Many companies serving autistic children and their families will start fundraisers for Autism Speaks, who will make a killing that month.
If this is the corner of the internet in which you reside, stop and pause for a second and listen closely. How many autistic voices do you hear?
If your feeds are full of blue, it’s unlikely you have any, because it was never really for them.
The History of Light It Up Blue
Before Autism Speaks chose to light up April in blue for their purposes, April was Sexual Assault Awareness and Prevention Month and their color was blue. Communities were lighting it up in recognition of survivors of sexual assault, and launching campaigns to draw attention to the problem and promote prevention strategies.
Like Christianity conquering Pagan areas, Autism Speaks inserted their own interests into the existing traditions. It was an easy way to jumpstart their campaign. “Look at all of these people lighting it up blue for Autism!”
“Huh?”
Well, Autism Speaks has bigger PR than sexual assault victims. They were able to spread their message more loudly, so if anyone was seeing blue around their community and wondering why, Autism Speaks had their answer. It may not have been the answer, but it was an answer.
It worked though. Autism Speaks splattered their marketing with the color, people started pairing blue with autism, drawing mental visuals of all of Autism Speaks’ imagery, and the movement grew. Next thing you know, landmarks in major cities– and even the White House – are lighting it up blue all April long – for autism. Specifically, for Autism Speaks.
April is still quietly Sexual Assault Awareness Month and they have changed their color to teal.
Why the Blue?
There are many other reasons given now: That blue represents “calm” and “the sky” or “the ocean” or other totally unrelated bullshit like that. The original reason though was because blue represented males, and Autism was purported to be more common in boys than girls.
Yep.
The whole your-genitals-must-be-color-coded-from-infancy thing gets even more heinous.
Once that started to get some bad press, Autism Speaks and its supporters rapidly erased it and threw as many other things out there as they could, but that was the original meaning.
Aside from the obvious fact that anyone– infants or older– can wear any color regardless of their genitalia and the world will indeed keep turning, those statistics have been called into question recently. As people have become more aware of the different ways autism manifests in children who are socialized female, that gap between autistic girls and boys has narrowed greatly.
Furthermore, autistics are far less likely to be cis-gendered. Van der Meisen et al. found that about 11.4% of autistic adults did not identify with the gender they were assigned at birth. Autistic adults are also more likely to be non-binary when compared to the typical population.
So what does the blue really represent? Femme and non-binary autistic erasure and Autism Speaks marketing.
Is Autism Speaks Really That Bad?
Yes.
While compassion for people caring for autistic individuals is a separate and important issue , Autism Speaks takes this to a dangerous extreme. They have been called out on multiple occasions for their ad campaigns depicting autistic people as burdens on their families and society. Children were recorded mid-meltdown without their consent, and parents were interviewed talking about what a nightmare it is to raise these children. These interviews were followed by clips of them hugging and laughing with their children as if these obvious afterthoughts would dismiss the terrible things they had literally just said about them.
Autism Speaks specifically made waves with this controversial clip in which a mother admits to contemplating putting her autistic daughter in a car and driving off of a bridge.
First of all: Anyone experiencing suicidal and/or infanticidal thoughts should seek help immediately (Suicide Hotline: 800-273-8255). Depression and isolation is a very real thing for caregivers, especially those raising children who don’t quite fit the typical expectations for how children “should” appear or behave.
That being said, what the actual fuck, Autism Speaks? The clip strongly implies that this feeling is relatable, common, and understandable not because of mental illness or other societal pressures on parents, but because of autism.
No one is responsible for their caregiver’s mental illness, especially because of who they are and/or their disability. No one.
Autism Speaks paints an overall negative picture of autism and autistics, which it uses to fuel controversial therapies and cures. Despite some lip service on their marketing products, they have no autistic people in influential positions at the company, and they provide very little in terms of education and accommodation to make the world an easier place to be an autistic person. Instead, they encourage caregivers to commiserate and mourn their situation when they could be learning to cope with their situation in healthy ways, including accepting their loved ones for who they are.
There have also been serious questions raised about how Autism Speaks utilizes the millions it receives in donations each year. On that note, I feel like it’s worth pointing out that yes, they do have a high score on Charity Navigator because most of their funding goes to their programs and projects. The problem is not necessarily the categories for allotment, but what those projects are to begin with.
Other Harmful Symbols
Many of the most well-known autism symbols stem specifically from harmful organizations: The puzzle piece, the blue light bulb, pretty much anything blue. While Autism Speaks is responsible for the blue bananza, the UK-based National Autistic Society put the puzzle piece into the aether as their original logo in 1963.
The thought process was that autism was a “puzzling” condition from which children specifically suffered. The symbol, which includes a crying child, not only invalidates the existence of autistic adults, but also presumes a specific experience without ever consulting the autistic people themselves. It represents the continuing tendency of a controlling population to talk over a marginalized one and dismiss their experiences.
To their credit, the National Autistic Society now uses this as their logo, which is objectively better for reasons I will explain later:
When considering these issues, it’s a little ironic that some have chosen this symbol as their hill to die on. Don’t get me wrong: Some autistics do identify with the puzzle piece and may even support Autism Speaks and the National Autistic Society. As an allistic, I am not going to join the masses who are invalidating any autistic voice, nor am I trying to imply that there are no autistics out there who don’t suffer from their autism. Anyone with a disability is going to experience challenges because of it, even if they wouldn’t change it if they could. That’s the nature of a disability.
The fact of the matter is though that the overwhelming majority (over 90% according to multiple polls) of the autistic population feels the opposite, and trying to dig out the few people within the community who disagree is tokenism at its worst. It’s no better than your conservative uncle sending you the article written by the single black person who condemns Black Lives Matter. Considering the seriousness of the objections, it’s important to go with the majority on this one, especially since the alternatives (which I will get to in a second) are benign.
My point is that the overwhelming majority of autistics not only don’t support these symbols or organizations, but in fact consider them hate groups and the corresponding symbols to be hate symbols. For far too many autistic people, these organizations’ symbols are triggers for trauma. So, imagine what it’s like for them to be on the internet during the month of April and see the world exploding with them, blasting them into everyone’s face and then patting themselves on the back for it.
What can I do Instead?
As always the answer is going to be to listen to the autistic community itself, even if some of the things being said are hard to hear, but here’s a quick guide for some changes to make right now.
- Instead of Light it Up Blue
- Red Instead (#RedInstead)
- Tone It Down Taupe (#ToneItDownTaupe)
- Instead of the puzzle piece
- Infinity symbol: The gold one is autism-specific because Au is the chemical symbol for gold. The rainbow one represents neurodiversity as a whole.*
- *Just be aware the rainbow infinity symbol can also be associated with the polyamory community, specifically the gay polyamory community. There are thoughts on all sides of this issue.
- Infinity symbol: The gold one is autism-specific because Au is the chemical symbol for gold. The rainbow one represents neurodiversity as a whole.*
- Instead of Autism Awareness
- Autism Acceptance: At this point, most people are aware of autism’s existence, but awareness doesn’t help make the world a better place for anyone. As much as symbols of support are a nice gesture, action is more appreciated. Acceptance implies that you are speaking out to uplift autistic voices, working to educate others about how we can all be more inclusive, and reducing challenges through accommodations.
- Instead of Autism Speaks
- Literally anything? OK, I’ll help you out a bit more than that. Here are some far more accepting places to donate your time and/or money:
Resources
Autism Advocacy and Education. autismadvocacy.org
CBS Newspath/WKRC. (2019, April 3). White House lights up blue for World Autism Awareness Day. Local 12. https://www.autism.org.uk/
Crossman, C. (2019, March 20). The ableist history of the puzzle piece symbol for autism. In the Loop About Neurodiversity. https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/
M, A. (2020, July 27). The polyamory flag is a grim, confusing failure. Let’s do better. Polyamory in the News! https://polyinthemedia.blogspot.com/2019/10/a-new-polyam-flag-that-fits.html
National autistic society. In Autism Wiki. https://autism-advocacy.fandom.com/wiki/National_Autistic_Society
National Sexual Violence Resource Center. https://www.nsvrc.org/saam
National Autistic Society. https://www.autism.org.uk/
Polyallsorts (2018, May 24). The infinity heart symbol and polyamory. Poly All Sorts: A Mix of Polyamory Related Blogs. https://polyallsorts.wordpress.com/2018/05/24/infinity-heart-symbol-and-polyamory/
Puzzle piece logo. In Autism Wiki. https://autism-advocacy.fandom.com/wiki/Puzzle_Piece_Logo
Van der Miesen, A.R. Hurley, H., & De Vries, A.L.C. (2016). Gender dysphoria and autism spectrum disorder: A narrative review. International review of psychiatry. 28(1): 70-80. doi: 10.3109/09540261.2015.1111199