Every April, social media is bombarded with blue puzzle pieces, “Light it up blue” filters on everyone’s profile picture… and angry autistic people who want it all to stop.
If you’ve ever wondered why, hold onto your butt, because this is going to be a wild ride.
First you need to understand something very important:
Almost everything you have ever learned about autism has come from non-autistic people.
Why does that matter?
Well… mostly because autistic behaviour is so damn confusing to neurotypical people that for decades psychologists and parents have had to guess at why we do the things we do.
Why do autistic kids flap their hands and spend hours staring at light reflections on a wall? Why do they sometimes act totally oblivious of their surroundings, but then do something that seems very intelligent and aware?
Theories abounded. Was it schizophrenia? Many people thought so. Was it inborn? Was it a mental illness?
They had no fricking clue.
So they observed, and took notes, and developed theories, and those theories somehow became fact, and now you hear them repeated every April.
Autistic people keep speaking up and saying that none of this is accurate, but no one listens to us because everyone knows that REAL autistic people can’t speak for themselves.
For that, we have Autism Speaks.
Autism Speaks is a relatively new organization, but its awareness campaigns were so effective that it spread like a virus, and now its blue puzzle piece logo is considered synonymous with autism.
Autism Speaks was founded in 2005 by Bob Wright – a former NBC executive – and his wife Suzanne after their grandson was diagnosed with autism.
In 2006, they debuted a powerful documentary to raise awareness about autism. Specifically, to let the public know how much the families of autistic people suffered.
The film was screened at the 2006 Sundance Festival and a seven minute version of it is still on the Autism Speaks YouTube channel.
The most notorious part is where Alison Singer, former vice president of NBC and then-executive vice president of Autism Speaks, talks about wanting to drive herself and her autistic daughter off of the George Washington Bridge… in the presence of that same daughter.
Many people living without autism think that “severely autistic” people do not understand what is happening around them.
This is untrue.
And that means her daughter heard her mother talk about committing murder-suicide.
Thanks to the power of MSNBC’s network coverage it is now commonly believed that murder-suicide might be preferable to living with an autistic child.
In 2009, they went a step further and asked Alfonso Cuaron to produce a creepy film called “I Am Autism,” where autism describes itself as a malicious entity coming to destroy families.
Not only did this video present autism as a terrible disease, but it filled the public’s head with false statistics. The divorce rate claim, for example, is entirely false.
Autism Speaks has since removed this video from their channel, but they have never apologized for it.
Autism Speaks’s marketing tactics were powerful and effective.
The founder’s connections to NBC made sure it got airtime and soon its blue puzzle piece and “Light it up blue” campaign took over the US, and absorbed three other autism charities, including Cure Autism Now.
The Wrights’ daughter, Katie, firmly believes that her son’s autism resulted from vaccine damage– a myth that science had already discredited in 2005.
In summary– Autism Speaks has done a lot of harm to autistic people, from the anti-vaxxer movement to the portrayal of autistic children as terrible burdens who ruin their families’ lives.
And so every April, when that blue puzzle piece shows up all over our Facebook feeds, we get upset.
Every April, we see the organization that demonized us promoted as an organization that represents us.
Autism Speaks does not, and never has, represent autistic people.
Autism Speaks is not, and never has been, represented by autistic people.
Autism Speaks is created by and for families who “live with autism” – in other words, have autistic children.
Their board of directors, which over the years has contained big celebrities (currently Tommy Hilfiger) and many parents and grandparents of autistic children, but few-to-no actually autistic people.
Currently they have one listed on their list of board members.
None of the autistic board members have ever been what is often dubbed “severe” or “low-functioning” – in other words, autistic people who are non-speaking or who require a lot of care and support in adulthood.
“But surely,” people argue, “non-verbal autistic people can’t serve on boards and advocate for autism. That’s the whole point of Autism Speaks.”
Yeah, uh, that’s a myth.
Many non-speaking people with very high support needs can and do communicate their thoughts and opinions. If you haven’t discovered any of these vital voices in autism advocacy, it’s time you do.
Many non-speakers can write. They can communicate.
They have opinions, and they have a LOT to say about how autistic people should be treated, and what type of supports are most useful.
Despite this, Autism Speaks fans will insist that autistic activists are “high-functioning” types who don’t care about the needs of people with “severe” autism.
They believe that anyone who types on Twitter must not really be autistic, because they believe that “severe” autistics can’t advocate for themselves. As you can see from videos and links above, this is quite untrue.
It’s remarkable how tightly people cling to the insistence that the people above are some kind of hoax. I can’t see any puppet strings – can you?
Why do people think a board full of non-autistic celebrities know more about autism than non-speaking autistics? We have no clue.
People who live without autism can be puzzling and mysterious.
And so, every April we have the same old arguments.
We insist that we are indeed capable of empathy.
We explain that our stims are actually important to our emotional health, not an affliction that needs to be eradicated.
We point out that non-speaking autistic people also hate Autism Speaks.
“But Autism Speaks has changed!,” some people insist.
It’s true, it has. It is better than it used to be.
In 2013, Autism Speaks finally changed its position on vaccines, admitting that there is no evidence linking vaccines to autism.
In 2015, Autism Speaks removed “cure” from its mandate, accepting that autism is genetic and inborn, not an illness that needs to be cured. The Wrights resigned that same year. Their daughter Katie now sits on the board of SafeMinds, a charity dedicated to “resolving the autism crisis.”
They also put two autistic people on their board of directors, one of whom is still listed as of March 2019.
“So, everything’s all better now, right?”
It’s great that Autism Speaks is trying to step away from their autism-demonizing, anti-vaxxer roots. But they have not apologized for, “I am Autism.”
They still have the edited version of “Autism Every Day” on their YouTube channel.
Their board is still overwhelmingly non-autistic.
They still don’t have any non-speaking or high support needs autistic people on their board, and they don’t consult with non-speaking activists.
They still refer to us as “people with autism” or “people living with autism” as if autism is some kind of parasitic twin.
And they are still, first and foremost, an AWARENESS organization. The majority of their spending is in media, where they promote autism awareness. Blue puzzle pieces in the background of “The Good Doctor.” News pieces on autism support for families.
Stuff like that.
In other words, when you donate to Autism Speaks, you donate to the “Light It Up Blue” campaign, but that’s about it.
Yes, they do some scientific research (currently they are trying to find genetic causes for autism and medical tests to identify– and presumably eliminate– autistic people before they are even born), but their research spending is dwarfed in comparison to their media spending.
By contrast, my local autism charity, the Vancouver Canucks’ Autism Network, spent 2.7 million of its 3.7 million raised on local autism programs.
But none of their board of directors are autistic either.
The fact that so many autism charities lack actually autistic people– particularly the high support needs people that these organizations claim to represent most– just perpetuates the belief that autistic people cannot speak for themselves.
In either case we are assurred that the best people to speak for autistic people are people who are living with people who are living with autism, not autistic people themselves.
We are puzzles to be solved, mysterious beings. If only they could understand us, know why we do the things we do.
But there’s no way to know, because autistic people who can talk aren’t really autistic and autistic people who can’t are cognitively impaired burdens who don’t understand and aren’t really writing when they write.
When we try to speak up, we are told to be quiet. Autism Speaks is busy speaking about things we can’t possibly understand.
Maybe if they took some tips from actually autistic adults, they wouldn’t have to consider throwing their kids off of a bridge.
But most parents of autistic kids don’t even know where to find autistic adults – many of us parents ourselves – who can help them.
Our voices are buried under the fundraising monolith that is Autism Speaks.
It’s Autism Awareness Month, and they don’t want autistic people messing it up.
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It represents parents who ordered a neurotypical child and are very unhappy they were accidentally shipped an autistic one instead and while they Love Their Child Just The Way The Are® as all parents must, they’re far more concerned with being able to use the kid as the Neurotypical Mini-Me™ they ordered than they are with the kid’s well-being.
That said, referring to autism as a parasitic twin is such an apt description I’m actually sad I didn’t come up with it myself. I’ll be stealing that from now on.
Also, stimming is “important to emotional health?” I mean, that’s maybe technically true but it seems a weird way to describe it. A stim is an obligation. It’s scratching an itch. Obviously, trying to eradicate the stim without addressing the underlying need would be equal parts pointless and horrifying (and we all know how much Autism $peaks loves ABA, which seeks to do just that), but if there were some way to eradicate the need that I need to stim to address, I’d be first in line.
Obviously we all want to reduce the anxiety and stress in our lives that gives us a strong urge to stim, but wouldn’t it be nice to be comfortable stimming in public regardless? No matter how stress-free my life is I would still get pleasure from stimming. Stimming feels good. I wouldn’t want to give up my stim blanket no matter how easy a life I was promised in return. Why give up bliss?
Your description of your stims reminds me more of the description I have heard of tics. Tics don’t feel good, they’re just compulsions/urges that need to be relieved. But stims feel GOOD.
I like that article, how it shows the distinction between “awareness” and “acceptance”.
Awareness is dehumanizing – they are awake of us as a “puzzling” phenomenon, not as thinking beings who can understand their feelings, if they are given the right cues or hints.
It’s the neurotypicals themselves who are puzzling, hiding behind implied meanings and unspoken terms they barely understand.
They want quiet because they respect quiet, but they are reproducing omerta, the law of silence, used by an entire “culture” of abuse they are at the cusp of being aware of.
Most of the neurotypicals who are friends of me understand the value of fighting that “culture”, perpetrated over millenia.
I am in a french neurodivergent radio club which makes a 55 mn podcast that is *supposed* to be broadcasted by at least 10 radios, 3 being in range of my radio receptor. We sign contracts with those independent radios, and send them perfect download links to our podcast. When I tune in at the right hour and day to hear them, I often hear nothing of it, as in, the usual music.
They sure don’t forget most other things, but the “Emi-Sillon” (pun on emission) ? Oh, sometimes they forget. And sometimes they have “technical problems”.
Keep in mind those radios are “free” “independent” radios who often have claims to enjoy difference and help silenced people who need their voice to be heard. But, even *them* have problems giving *us* an hour every *month*.
There is something festering in the world, disabling neurodivergent expression. A disquieting, deathly, loathsome silence. Whoever they are, they are aware of us, and wholly unaccepting.
I will fight the silence and dedicate my very life at expression, even though it isn’t my vocation, and sacrifice up what’s left of my sanity to make them understand we can, we *ought* to be *friends*, part of the same Humanity.
By the way, “stimming is important to emotional health” because stimming has a reason to happen, it’s a coping mechanism, like when a baby sucks a pacifier. If we stop it or get it suppressed, distress happen. It’s like the sensory diet – I die in silence.
Of course we only have a vague idea of the reason behind stimming, but that reason is *as solid* as the need of having someone to sleep on and suck milk off as an infant.
So when ABA “therapists” shock autistics because they stim, they hit them with *double torture*. Pain and distress, numbing intelligent thought, turning what would be “simple” “aspies” into severe, non-functional traumatized minds that will need years to heal and regain functionality, in a society where people are discarded if they take too much time to become “useful”, as the System disrespects life by enforcing “usefulness”…
As a parent of an autistic son, thank you…but there is a lot of work to do to get other groups out in front of us parents who have no clue. My insurance company, school,and state organizations point me to Autism Speaks.
No one else.
They are winning and your next generation is losing.
They triggered my BS meter very quickly…but more for their focus on selling me junk and delusional notions of how to get services in place …but it is hard to find the groups you recommend…
We need you to help us help our kids….and we’ve got a long way to go together.