It’s April, So It’s Time To Argue About Autism Speaks9 min read

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.

People with autism are inca­pable of empathy.

People with autism struggle to escape their autism and need help.

People with autism have obses­sive tics that happen when the person is bored.

People with autism can’t learn without intense behav­iour mod­i­fi­ca­tion tech­niques sim­ilar to what you would use on a dog. 

People with autism are intel­lec­tu­ally dis­abled and cannot advo­cate for them­selves.

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 hosted on the Autism Speaks YouTube channel.

The best and 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 young daughter heard her mother talk about com­mit­ting murder-suicide.

This is the view of autism that was dis­trib­uted to the public using the power of MSNBC’s net­work: 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 had taken over the US, and absorbed three other autism char­i­ties, including Cure Autism Now.

The Wrights’ daughter, Katie, firmly believes that her son’s autism was a result of vac­cine damage– a myth that even in 2005 had already been dis­cred­ited by sci­ence.

Autism Speaks there­fore spent a sig­nif­i­cant por­tion of its sci­en­tific spending on funding studies trying to find a link between autism and vac­cines, which per­pet­u­ated the myth and fueled the anti-vaxxer move­ment.

In sum­mary– Autism Speaks stood for every­thing that frus­trated autistic people, from the anti-vaxxer move­ment to the por­trayal of autistic people as ter­rible bur­dens who ruin their fam­i­lies’ lives.

And so every April, when that blue puzzle piece starts showing 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.

It doesn’t.

Autism Speaks does not, and never has, rep­re­sent autistic people. It rep­re­sents fam­i­lies with 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.

Meet the Autistic Self-Advocacy Network, or “ASAN”

ASAN’s board is filled with non-speaking, high-needs activists including Cal Montgomery, Amy Sequenzia, and Ben McGann.

Despite this, Autism Speaks fans will insist that autistic activists are “high-functioning” aspie types who don’t care about the needs of people with “severe” autism.

Why do people think a board full of non-autistic celebri­ties know more about autism than a board full of high sup­port needs autistic people? 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 beg people to donate to ASAN instead of Autism Speaks.

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?”

Sorry, no.

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.

Their 2017 spending report — the most recent report avail­able on the Autism Speaks web­site — shows 2 mil­lion in spending on sci­ence, 1 mil­lion on fam­i­lies, and 51 mil­lion in spending on media.

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.

The problem with being autistic is that you are either con­sid­ered too “high func­tioning” to be REALLY autistic and there­fore your opinion doesn’t matter, or you are con­sid­ered too “low func­tioning” to be able to com­mu­ni­cate or have an opinion.

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.

It never seems to occur to anyone that if par­ents actu­ally lis­tened to autistic people, we might be able to help them with their kids and those behav­iours that annoy them so much.

Maybe if they took some tips from actu­ally autistic adults, they wouldn’t have to con­sider throwing their kids off of a bridge.

Until then, April is a time dreaded by autistic people as we are con­stantly con­fronted with media por­traying us as ter­rible bur­dens who cannot speak for our­selves.

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.

When we do try to speak up, we are told to be quiet.  Autism Speaks is busy speaking about things we can’t pos­sibly under­stand.  When someone does a search on any­thing related to autism, it’s not us who come up in the results.  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.

To donate to ASAN, go here.

To help raise REAL aware­ness of autism, please share this article and other arti­cles by the actually-autistic writers on The Aspergian.  Help us pro­mote our­selves, because we need neu­rotyp­ical allies to help us be heard. Or, share the fol­lowing posts by non-speaking autistic people:

12 Comments

  1. 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.

    1. Author

      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.


  2. 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 omertà, 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”…







  3. 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.


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