Smash the Blue Lights: Autism Speaks is a ‘Danger to Self and Others’

Sera Davidow
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Spring is finally here, as rocky of a start as it may have had. Yet, instead of enjoying all those April showers that so predictably beget our May flowers, someone(s) somewhere has declared these two spots on the calendar to be Autism and Mental Health awareness months. (Who has the power to make such proclamations, anyway? More on that in a moment.) In their honor, Facebook has introduced its usual opportunistic and honorific picture frames, and many social service (and self-proclaimed advocacy) organizations are scurrying around to get something on their calendar so no one accuses them of shirking their duties during this oh so special time of year.

But some of us are not celebrating.  

As it turns out, Mental Health America is responsible for ‘Mental Health Awareness month’, having initiated the trend in 1949. (See the article ‘The Downfall of Peer Support: MHA and Peer Certification‘ for more on them and the many other gifts for which we have to thank them. For that matter, also check out ‘Do NAMI and MHA Suffer from Anosognosia?‘, ‘Dear NAMI: My Apologies. I’ve Been Unfair.’ and/or ‘I am the Number 60‘, while you’re at it). It’s a little less clear from where Autism Awareness Month hails, but an organization called the Autism Society seems to be claiming credit. Even more clear is that Autism Awareness Day (falling within Autism Awareness month on April 2nd each year) was actually born in 2008 through a resolution from the United Nations following a panel that involved (shockingly) Autism Speaks. Autism Speaks is also responsible for the related ‘light it up blue’ initiative that drove this year’s social media recognition efforts.

Our strength to fight back would be stronger if we joined voices.

There are few around Mad in America territory who would argue against the dangers of the National Alliance for Mental Illness (NAMI). Whatever their efforts to the contrary have been and regardless of how much some of their local chapters may sometimes vary from the national status quo, they are ultimately a tool of the pharmaceutical industry, paternalistic advocates for our loss of rights, and impostors feigning representation of our voice. (That ‘Dear NAMI: My Apologies. I’ve Been Unfair‘ article referenced above actually speaks directly to how the pharma industry knowingly uses such organizations to their capitalistic advantage.)

But as a movement, we often fail to recognize the dangers of their much younger sibling named ‘Autism Speaks’. (NAMI, on the other hand, eagerly promotes them on their website). While Autism Speaks is more than 25 years NAMI’s junior, they’re sprung from the same roots. Each was dreamt up by family members (Autism Speaks by concerned grandparents, and NAMI by a group of desperate parents huddled around a kitchen table back in 1979).  They each proclaim themselves to be the biggest and the best, raising themselves up on the backs of those their missions claim it is their duty to ‘save’.

Autism Speaks Verses NAMI

Ultimately, Autism Speaks is to autistic people as NAMI is to those with psychiatric diagnoses. Here’s just a small handful of examples exploring their similarities:

  1. They use fear mongering as a tool to raise funds, pass laws, and prey on desperate families: A parent’s worst fear is that something will be ‘wrong’ with their child, and both NAMI and Autism Speaks strive to make the most of that. They draw in parents who have nowhere else to turn by trading in terror, and offering themselves as the only compassionate voice who ‘gets it’ in town. Check out this horrific commercial from Autism Speaks called, ‘I am Autism.’ It quite literally paints Autism as the bogeyman homewrecker extraordinaire. It was taken out of circulation based on public response, but we should not lose sight of the fact that it nonetheless was created in the first place.

 

 

2. They prefer to speak for and not with whenever possible (which is most of the time): Consider this excerpt from codeman38, an autistic blogger:

Imagine, if you will, that an organization existed by the name of “Womanhood Speaks,” which, on the surface, appeared to be in support of women’s rights.

Now imagine that the governing body of this organization only included members of the male gender, with not one female represented in its ranks.  Imagine that its actual aim was to create a registry of all females and force them to become more masculine, completely disregarding the fact that a majority of females were perfectly content with their womanhood and even found it to be advantageous. Imagine that members of its leadership appeared on popular TV programs talking about the epidemic of womanhood and how it needed to be eradicated.

Doesn’t sound too appealing, does it?

Although this piece is focused on the phenomenon that is Autism Speaks, it echoes of the assumptions and approach of NAMI, as well.

3. They use tokenism as a shield: When accused of speaking too loudly or too often for an oppressed group, what’s the best defense? Employ a single member of that oppressed group and expect the accolades to roll in. If you’re a big enough organization (as both NAMI and Autism Speaks surely are), you may even be able to survive a small handful of such people (or a few chapters of concentrated groups of them) without the foundation of your organization being fundamentally moved. In the case of Autism Speaks, they’ve aimed especially low, and almost never make space for an actual autistic voice at all.

One notable exception, however, was that of John Elder Robison, an autistic man who stuck with Autism Speaks for about two years before writing a fairly scathing and open letter of resignation.

4. One of their main ‘tricks’ is to try to disappear the people they claim it is their mission to support: While NAMI is busy advocating for forced measures that so often mute people’s abilities to be present in the world and lead to early death, Autism Speaks approaches this issue even more directly. The primary thrust of their research (on which they spend about five times more than the 4% of their total earnings that apparently go toward direct support services for living beings) is to develop testing in utero that can identify autism so that autistic people are never born at all. No wonder so few autistic people want to stand by their side.

5. There’s only one way to do things, and doom awaits if you don’t: NAMI has worked for decades to convince vulnerable parents that psychiatric diagnoses are “just like diabetes” and to ensure they stay good and afraid of any sign of ‘non-compliance’ in their kids, touting the wonders of Involuntary Outpatient Commitment (also euphemistically known as ‘Assisted Out Patient’ treatment or ‘AOT’) as a tool to head off such peril. Meanwhile, Autism Speaks is much more concerned with Applied Behavior Analysis (ABA).

ABA essentially employs Skinner’s method of changing people’s behavior in an effort to make them… well, more palatable for other people. It rewards good behavior, sometimes also punishing bad behavior with so-called ‘aversives’. Understanding on the part of the person being so changed is not required. More than one autistic person has called it little more than dog training for humans, and post-ABA trauma stories abound. Yet debates sometimes rage between people who claim it’s wrong or dehumanizing, and those who swear that it was the only thing that made it possible for their autistic friend or family member to live in this world. (Perhaps the latter argument would be less difficult to swallow if ABA weren’t so commonly used not just on that which is deemed dangerous, but also on ways of being that others may simply find weird or annoying.)

Not sure yourself? Well, consider this: Autism Speaks openly supports the Judge Rotenberg Center (JRC), one of many ABA-focused facilities. JRC, based in Canton, Massachusetts, is the only place in the country that allows for such extreme aversives as administering painful shocks to change behavior. What does that look like? Check out this (extremely upsetting) video for an idea. (By the way, this ‘school’ also accepts people with psychiatric diagnoses. And, yes, it’s true. They do use less psychiatric drugs than most. Because, you know… physical torture works wonders, too.)

 

When we ignore our intersections with other movements, we ignore our full potential.

In spite of all this intersection, it seems there’s something still keeping us divided much of the time, though I’ve come to think that’s more misunderstanding than anything else. The medical establishment in both the psychiatric and autistic worlds appears similarly invested in diagnosing all things different as ‘bad’, then targeting them for eradication. People with first-hand experience in both arenas report having the impression they’re being punished or pathologized primarily for thinking, being, or interfacing differently with their world. That’s not to say there aren’t also real contrasts between the experience of being psychiatrically diagnosed versus autism (or being treated as such by those respective systems), or that they aren’t worth regarding (and respecting!) for their distinctions, too. It’s also not to say that this statement on its own might not be somewhat of an oversimplification, but it does seem that overall both groups are fighting for greater acceptance of simply being able to be them.

We aren’t so different after all.

There’s so much that could be said in closing, but an excerpt from the article ‘Don’t Mourn for Us’ by Jim Sinclair (originally published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993) seems the best way of all.

Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being… It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say, I wish my child did not have autism, what they’re really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Smash the blue lights.Smash the Blue Light: Autism Speaks

For more information on the problems with Autism Speaks and other related information (in the voice of autistic people), please see the following:

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52 COMMENTS

    • Darby Penny; I Like the way you call NAMI and by extension Autism Speaks; Hate Groups. You can also add to that practices like Tough Love. It is a tragedy, in one way; because some of these parents think they are doing the best for their children and this is how to show their love. But, none of this real true love. It only shows and proves again; many feat what they cannot or refuse to understand; even if comes from their very own children. I am grateful for Sara for explaining the comparisons to us. It is helpful to be enlightened when we can. And, from experience, NAMI, ;like the alleged mental illness “industry, they support has only one goal to keep you “sick” by their false standards. Autism Speaks seems to have learned this well.

  1. This is a well written post, Sera. For that reason, it is troubling–as it should be. I have a nephew with autism, and believe I fall on the spectrum myself.

    I liked your analogy about the “women’s rights” group run by men. Only, my guess is they wouldn’t want masculine women, but submissive Stepford wives who knew their place.

    As an ex-NAMI member, I often felt they not only believed we would never be normal–they really didn’t wish it. Normal people are allowed to be assertive, independent and have good self esteem. For the “mentally ill” these are no no’s. The drugs would never normalize us or grant us full human status. But they would keep us from harming others. So we believed.

  2. The fight against Autism Speaks is going better then the fight against the pharma funded pharma front NAMI. Google search results for Autism Speaks exposes them. Look at the suggestions on the bottom of the page.

    Searches related to autism speaks: autism Speaks criticism, autism speaks controversy

    Now do a search for “national alliance on mental illness”, nothing about pharma funding and opposition to patient rights comes up.

  3. Did you know people with Autism have started their own counter-group to Autism Speaks? It’s called Boycott Autism Speaks.

    We need to start a group call Boycott NAMI.

    When you consider the crossovers between the neural atypicals and the mad–many fall into both groups–we could support each other. We need all the allies we can get.

    • Sami Timimi and two people who were diagnosed with autism, but who later de diagnosed themselves wrote a book called The Myth of Autism: medicalising men and boys sociall and emotional competance https://he.palgrave.com/page/detail/the-myth-of-autism-sami-timimi/?sf1=barcode&st1=9780230545267

      They also wrote a paper for the BMJ saying autism is not a scientifically valid or clinically useful diagnosis http://www.bmj.com/rapid-response/2011/11/03/autism-not-scientifically-valid-or-clinically-useful-diagnosis

      Timimi is a child and adolescent psychiatrist who has published on Mad in America. Timimi, Cabe and Gardener write that people’s individual experiences and those of them around them need to be taken into account when offering help and that a diagnosis of autism is a distraction from that. I believe there arguent is also that late capitalism demands people who have good customer service skills and those are often more feminine ways of being. Therefore boys behaviour, which in previous generations would have been fine in the workplace, are now medicalised.

      Interesting argument, I like it, many will take issue with it.

  4. OMG – I just watched the vid. Horror movie meets early public health HIV AIDS add.

    AUTISM = DEATH

    AUTISM IS THE CREEPY MONSTER OF YOUR DREAMS.

    If this is what Autism and Mental Health Awarness Month is about I wanna see that blockbuster movie now. Gotta be better than the last X-men movie.

    Did they really raise huge ammounts of money and say they were supporting people with autism? Surely they are a front for some wild neo-fascist, kill all people with learning disabilities, fringe group?

    Or am I wrong?

  5. Interesting perspective. Basically, what the author has done is equated the development of a mental disorder with characteristics of which people are born, e.g., I was born this way, don’t condemn me!. The difference is that people aren’t typically born autistic, nor do symptoms of mental illness, such as psychosis, typically appear until late teens, early 20’s.
    I understand the appropriateness of valuing every individual for their unique qualities. I would like to pose this question for the author and all those that endorse her perspective: “Should this have been the same perspective when all the children in the first half of the 1900s were struck with Polio? Should we have said, “This is not something to eradicate, it is what makes them unique and should be treated as such.” Should we embrace those with diabetes, epilepsy, children with learning disabilities, allergies, dyslexia, and say that it is disrespectful to their personhood to want to eliminate the conditions from which they suffer? I have never met a person who has remitted from their psychotic symptoms tell me “Can I have them back? That’s who I am.” They may struggle with potential side effects from the medication, they may want to be “like” others, but it is rare to find an individual in a non-psychotic state who wants it back. Rather, I have people lament over the incidents that happened while they were psychotic or manic. You may say, “Well, what about autism?” “Why aren’t there autistic people out there speaking on behalf of their disorder (or themselves identified as ‘autistic’). Well, first of all, one of the hallmarks of the diagnosis is significant deficiencies in communication, or no communication at all. As with many disorders, the severity of symptoms is on a “spectrum.” There are those who identify themselves as “autistic” or “I was autistic” who speak about the disorder. From them we can learn much. We think it’s great that they can speak, unlike most of the others who suffer from autism. How do those who can’t speak identify themselves? Why do we think we can speak for them? Do you know if they would choose to remain the same if given the option? Would they be offended if someone presented them with a vaccine or cure that would allow them to: understand that other people have viewpoints, productively participate in a social event, to have a romantic relationship, to have a career in which they excel? Yes, there are many on the spectrum working for Microsoft. They are not autistic if they are productively working. There are far more many sitting on floors, flapping their hands, hitting themselves, refusing to be touched, smearing feces on the wall, shouting at the top of their lungs. Is this who they are? Is this what you want to endorse as their person hood? The next time you visit your physician and hear that you have a condition (diabetes, epilepsy, allergies, lupus, leukemia, dyslexia, sensory processing disorder) tell him “This is who I am” and refuse. The next time you’re at the eye doctor, tell him you don’t want glasses because these are the eyes you were born with and find it insulting to think that the vision they provide can be improved. If you were born with scoliosis, tell the doctors that you’d rather have a twisted spine, and all the limitations this brings with it, rather than to have treatment. Absurd isn’t it? Is there a way that we can advocate personhood without glorifying a debilitating disease? If you’ve never suffered from such conditions, or loved someone who has, you will get on your soap box and berate me. Go ahead. You just show your ignorance. Sometimes, people, life is not black and white. I can advocate for an individual, while fighting the debilitating condition of which they suffer. It is authors like this that contribute significantly more divisiveness in the community than unity, ignorance rather than education. We can do better people. We can think beyond the black and white. Most of us can handle complexity and don’t need it broken down to the level of mind-numbing simplicity. Right? or is this the society in which we live?

    • Would you blind a person for near-sightedness? Would you sever the spine of a child with scoliosis? Would you amputate a person’s legs to cure dwarfism?

      Your argument that you are helping people with unproven brain problems is flawed because the solution you offer is brain injury. Psych drugs do NOT normalize sir, they sub-normalize and make true recovery impossible.

    • Standra
      you seem to be confusing physically identifiable actual physical illness/diseases with differences in being. A physical disease such as polio can and probably should be prevented and/or cured (by vaccines and other physical means) where possible.

      With differences in ways of being it is a little more nuanced. We know that SSRIs used in pregnancy increase the risk of a child having struggles, and for sure, when such difficulties have a direct physical cause that could be prevented, that would be a desirable to prevent them. That could be done by not allowing pregnant woment to take anti-depresants. After all, “normal” (whatever that may mean) IS easier, for the person with the condition and their family.

      However, when “autism” is just part of the spectrum of normal functioning, as it seems to have become, and is a front for raising money for pharmaceutical companies and lobby groups, something has gone way off track. I have no doubt that I could be diagnosed with autism spectrum disorder or whatever the current term might be, and I could invest many thousands of dollars in drugs to become more “normal” because I really do struggle at times – neuro-diversity has its drawbacks – but on the other hand, I am unique and I don’t want to be told I NEED drugs to function.

      The pharmaceutical companies exploiting people’s fear of neuro-diversity would prefer we were not unique and that people fear “unique” simply because it offers them the opportunity for making PROFIT…something they are very good at.

      Neuro-diversity is valuable. It is not an “illness” that should be used for profit. Causing brain damage with drugs that purportedly treat an illness that has not been shown to have a physical cause may profit drug companies, but all it does for neuro-diverse people is DAMAGE their brains and make it more difficult for them to function!

    • Thank you Strandra for your viewpoint. You have stated very eloquently what many parents of diagnosed individuals have been saying at MIA. Unfortunately, the voices of many that used to post here have been silenced by the posters here who keep insisting that there is no such thing as mental illness and that those diagnosed are simply “different”. Anyone with a different experience is labeled hateful or a eugenicist. I am not an expert on NAMI or Autism Speaks but I do wonder about the anger towards organizations and individuals who are trying to help.

      • I think the anger toward Autism Speaks and toward NAMI is not a result of people denying the existence of conditions that are called “mental illness” or “autism,” but rather of the “professionals” and parents of such people deciding how to define what is “wrong” with their clients/children as well as what they HAVE to do to “fix” themselves to the satisfaction of the parents/professionals. It is a very undignified position to put someone in and folks are understandably upset/angry about having that done to them.

        It is important to distinguish also between saying that no one SUFFERS from conditions that are called “mental illnesses” in the DSM, and saying that the DEFINITIONS of the “disorders” in the DSM are unscientific and damaging. No one is saying that people don’t suffer or that they usually want their “symptoms” back if they go away. What I think most people are saying is that LABELING someone with a “disorder” and prescribing “treatment” based on fraudulent notions of “chemical imbalances” while completely ignoring trauma, social conditions, nutrition, sleep and other factors that may cause or contribute to the distress. It’s kind of a shorthand to say “mental illnesses are a myth” when we mean “mental illnesses as defined in the DSM are unscientific and misleading.” Based on what you’ve said earlier, I don’t think you and I are very far apart on that question, though I’m happy to be corrected if I got that wrong.

        People definitely experience all forms of distress and difficulty, and no one is saying they don’t need or deserve help. All I’m saying is that DSM labels and condescending “professionals” who are unable to see past their own biases and issues are not helpful to anyone.

        — Steve

        • I’d add also that the support of the pharmaceutical companies for these supposedly “patient advocacy” groups and the pushing of pharmaceutical solutions to every problem adds to the lack of trust in these organizations. Further, the lack of any apparent interest in consumers/survivors contributing to their agenda is a barrier to trust.

          I’d have look at the youtube from Autism Speaks if you had any doubts of their lack of connection to the actual needs of autistic people:

          https://www.youtube.com/watch?v=9UgLnWJFGHQ

          I found it pretty awful!

          — Steve

          • Steve, Thanks for your reply. I watched the video and found it very strange, not really much information at all for those who do not know a lot about autism. I can see why Sera might find this organization and their ads disturbing.
            I have always liked your comments and you are not one of the posters here that I find upsetting. There are some others who have referred to me as a NAMI mommy, called me hateful, and blamed me for my son’s distress. Although, I still read MIA regularly, I am sometimes reluctant to post because of what I perceive as anger from some posters with lived experience towards parents and professionals.
            I think we all want the same thing, to find solutions to the problems of emotional distress. I just wish people would focus more on finding solutions and sharing information rather than blaming and attacking others.

          • I know what you mean. I think it’s hard to really understand the level of trauma and disrespect and outright shaming and humiliation many of these survivors have experienced, usually from the hands of authorities like their parents or teachers or “mental health” professionals. I find their anger quite understandable, having spent enough time in “mental health” agencies and a couple of psych wards and heard enough stories to see what really goes on. It is unfair when overgeneralizations are made, and it does make some folks anxious about posting. And some of those comments, like calling you a “NAMI Mommy,” are just insulting and inappropriate. But it is important to realize how much hurt is there and that such comments are not really directed at you personally, they are directed at all the “mommies” and “professionals” and other authorities out there who have hurt them and not even noticed or cared.

            You are clearly a good person who likes to deal with facts and has done some great work confronting the system with its own failures and mean-spiritedness. I’m glad to have you hear with us, despite the challenges you have faced!

            — Steve