OPINIONS

Autism, allyship and Autism Speaks

How would you feel if you were told on a national platform, by the co-founder of a supposed advocacy group working on your behalf, that you were lost? That you, and three million other people like you, were stolen from your family, your friends, and your community?

According to Suzanne Wright, co-founder of Autism Speaks – the most prominent and well-known autism advocacy group in America – I am lost. I am not living. My family is not living, either. They just exist, trying to deal with the burden that I am. Trying to deal with my difficulties with non-literal language. Trying to deal with my difficulties with abrupt change, unfamiliarity and the unplanned. Trying to deal with my constant fidgets and my sensory differences.

Last November, before the Autism Speaks’ first ever National Policy and Action Summit in D.C, Suzanne published an essay on Autism Speaks’ website about the “autism crisis.”

“If three million children in America one day went missing – what would we as a country do? [...] We would call out the [military...] Yet we’ve for the most part lost touch with three million American children [with autism], and as a nation we’ve done nothing.”

In case it wasn’t clear, I greatly dislike and disagree with Autism Speaks – in part because their fundraising budget is more than five times their family service grant budget (4 percent vs. 22 percent), and in part because their views towards Autistics are infantilizing: it’s not three million Autistic kids; it’s three million Autistic people. I dislike and disagree with them in part because they have no (open) Autistic representation on any senior or advisory board. The one Autistic person that they hired for an advisory board resigned last November, citing that he joined in 2010 in the hopes the he could reform the organization, but that with the publication of Suzanne’s piece, he realized that Autism Speaks has not changed – and will not change.

And that gets to one of my biggest problems with Autism Speaks. They don’t listen, and they don’t change. And they sure don’t speak for Autistics. After years of outcry from Autistics demanding respect, change and that more than 2 percent of their research budget be spent on understanding the needs of and services for Autistics, they are still the same organization that views me as diseased, disordered and a burden to society.

Recently at Stanford, a new student group has been formed, Autism Speaks U, the university-level organization of Autism Speaks. Across the country, the chapters of this organization sponsor Walk for Autism, Light it Up Blue and other campaigns that many, if not, most, Autistics do not support. While their intentions are good, the dialogue that these campus organizations creates is centered on awareness of the problems we are seen as, not acceptance of the people non-Autistics far too often forget us to be.

If you want to be or consider yourself an Autistic ally, I urge you not to support Autism Speaks or the Stanford chapter of Autism Speaks U. Rather, look for organizations to support that are run by Autistics and for Autistics, like the Autistic Self Advocacy Network, the Autism Women’s Network, The Thinking Person’s Guide to Autism and the Autism National Committee. The work they do supports Autistics, their families and communities.

There are also many other informal ways you can be an ally to Autistics. First off, educate yourself about who we are, our diversity and our collective goals and desires. Come to see us as a varied community of functional, competent people.

Call us Autistic (identity-first language). I’m not a person with transgenderness. I’m a transwoman. Similarly, I’m not a “person with autism.” I’m an Autistic. (Note: Some folks do prefer to be called person with autism, in which case, you should refer to them as such.)

It’s also important to understand that most Autistics do not want a cure, because most of us don’t believe that autism is a disease or a disorder. Nothing is wrong or broken with us. Our brains just function differently than those of others. We process the world around us differently. Sometimes it is a wonderful gift. Other times, it’s quite disabling. But it is not something that needs fixing or changing. What we need is acceptance and understanding.

Going into more detail about some of our neurological differences, most Autistics experience and sense the world very differently from neurotypicals (non-Autistics). For example, it is dangerously difficult for me to feel cold. Light touch can be very overwhelming for me, and I’m very sensitive to color and light. Most Autistics also have difficulty in large, crowded and loud situations and events. Having sensory-free (or as sensory-free as possible) spaces at parties, events and other large gatherings for Autistics to decompress and regulate themselves can make Autistics feel much safer and more comfortable in social situations.

Another important thing to do is to listen to us, assume our competence and take us seriously. If we ask for an accommodation of some kind, it’s because we need it. Likewise, if we give you feedback or a suggestion on how to make a space more accessible for Autistics, listen and engage seriously.

Keep these simple, easy ways of being an Autistic ally in your mind at all times, especially if you are planning an event or social gathering. Don’t be like Autism Speaks and ignore and denigrate us. Listen to us, respect us and take our needs seriously.

 

Erika Kreeger ’16

Contact Erika Kreeger at ekreeger “at” stanford.edu.

  • Nate Lloyd Watkins

    that’s really really good!!!!!! i’m an aspie myself. if we want those who we call “lower functioning” autistic to learn to use the bathroom, talk, ect., how are they gonna feel like learning how to do it with their parents/caregivers talking about them like they can’t do anything at all. “can’t” is a sick mentality. maybe “one day” or “will soon” be potty trained? besides, one should potty train them, but they could be already happy too. i for one used a plastic potty at age 5 and could remember the end logos at the end of the cartoons that i watched. an autistic could go in diapers at age 6 and remember all the flags of the world’s countries at the same time.

  • http://www.facebook.com/shannonrosa Shannon Des Roches Rosa

    Thank you for your very necessary statements, I hope readers take them to heart. And thank you also for mentioning Thinking Person’s Guide to Autism, but please note: we are a community nexus and information sharing resource for autistic people, parents, and autism professionals. Also, our editorial team does include non-autistic members. We do our best to make our site and Facebook community an autistic-safe space, and we follow autistic self-advocate leads. Again, my thanks, as a TPGA editor.

  • Bob Castleman

    I dislike “person with autism”. Thanks for pointing out that among those of us diagnosed, there are many that take issue with the semantic gyrations of person first language.

    And thank you for building the case that the best way to understand autism is to speak TO autistics, not for them.

    I wonder if an organization called “Speak To Autism” would run into trade mark issues with “Autism Speaks”. Autism Speaks is known for being hyper-protective of their brand.

  • Lenny Schafer

    If one does not consider oneself to be “diseased, disordered and a burden to society”, then why the need for an advocacy institution at all? If Autism Speaks does not represent your needs, it probably is because advocates for autism, which by definition is a disability and requires taxpayer dollars for each person so afflicted to live. Asperger Syndrome is no longer considered a part of the autism spectrum. If you are not disabled, you are not autistic. If you don’t think autism needs to be fixed, then you are probably not autistic and you should stop using the label intended for the disabled.

  • rubi-kun

    Disabled doesn’t necessarily equal “diseased, disordered and a burden to society.” Many autistic people face severe challenges related to their disability and want advocacy to help them face those challenges, but still question the need for a “cure” for a condition that heavily defines who they are for both bad and for good and certainly don’t want to be victimized and dehumanized the way Autism Speaks does.

    Also, Aspergers is no longer a diagnosis but it’s been folded into a general autism diagnosis. Most people diagnosed with Aspergers still qualify for the general autism diagnosis.

  • Turgar

    Autism Speaks doesn’t represent out needs because some of us remember being unable to speak. If you view their “education” it includes such gems as people openly discussing wanting to drive off a bridge with their autistic kid in the car.

    I do believe it is a disability. Of course it is.I do not believe it makes me lost, absent, or a total burden. I have abilities many of which are not made full use of because the small amount of consistent support throughout my life is not funded.

    Autism cannot be fixed. It is a disability but it is a brain based one. The bulk of money raised by that group goes into more fundraising so on a best practices point of view it is a bad way to change anything.

    Their main goal is and has always been the development of a prenatal test.

    If you look at their financials from when they founded for years they operated without spending a single cent on anything useful. To get an accurate idea of what they actually spend on services you have to do a lot of weeding out salaries that ridiculously high and if you look closely some things that they claim to support were events where services were provided pro bono by a group.

    I am disabled. My disability predates my birth and it lives in an organ so complex decent scientists admit how poorly we understand it. It has shaped how I experience the world since I entered it which in turn further shapes the brain. While I do not believe a cure is even possible given the complexity of what is involved hypothetically a cure would essentially destroy the person that was.

    Auti$m Doesn’t Listen being the better name for them as although they fund research that basically says they cannot meet their goals they carry on.

    They also because of the brand name recognition are often the first group people seek information from when they get a diagnosis. Countless parents made bad decisions for years because they were not given the information people knew when I was born so the situation is getting worse.

    If you had spent 10 years of your kid’s life assuming they were mentally retarded becaue they did not speak partially because of the vision of autistics as creepily absent and silent and having seen people say horrific things in front of their autistic kids who are supposed to be a “do good” organization how would you feel if you found out your child like the majority of people with autism whether they speak or not is not mentally retarded?

    How would you feel if people had thought that about you and you go on to study the brain and a hate group springs up that has charitable status that both promises the impossible but wants you and your kind prevented.

    Tell my please Lenny how they help us? I have told many a person who denies the disability what you said that by definition if you are not disabled you are not autistic so I badly want actual help. Funding for some support that has knowledge of autism so the supports that get coughed up randomly in my area don’t get angry when I cannot speak.

    I do not think it needs to be fixed. I do not think it can be fixed. I think like a lot of disabilities actual public awareness of what the issues are and the reality is would help but if the public was aware of some of what I just said they would not dig deep in their wallets to make sure the staff of this noxious hate group are paid so very well would they?

    Why is asking for a tiny portion of money to be spent on evaluating the actual needs of autistics outrageous? You know why right? Because they would have to own that we can’t have vanished. The vanished don’t have needs.

    I could die because of the severity of my issues dealing with the texture of food and the inadequacy of support and based on rhetoric that has me already so damaged I should never have lived it is hard to get people to give a darn.

    Tell me if you would call this group an advocacy group if their spin on your disability impacted your life to that degree?

    Of if you had made horrible decisions as a parent based on their disinformation and wind up feeling you can never make that up to your child.

    This is a hate group not an advocacy group.. How many charities get to openly discuss murdering those with the disability they raise funds not actually for but to line their own bank acounts? People are completely snowed by them and instead of looking to real science about autism or people with autism with a science background so we understand it well from both directions for information they look to a group that wants us all dead.

    If this was based on our skin colour, or even any other disability they would be shut down in this day and age..

    How would you feel then if you belong to the only group where your death can be openlly talked about as desirable or at the very least your extinction?

    When I was young they stripped us of our humanity by insisting we could not love now they just plain strip us of our humanity. Some people insist we have no empathy. Who really lacks empathy I wonder. People who can hold their autistic kids to their chest like props while describing them in rich horrific terms and how badly they wanted to kill them or those of us who say no you cannot do this.

    Or even the people who blindly fund them without looking at their financials.

    This is a hate group. Always has been one and always will be one If that’s okay with you fine but don’t make out like we lack humanity if you cannot see how horrifically wrong this group is and the damage they do each and every day.

  • Erika Lynn Abigail Persephone

    My first anti-Autistic hate comment. I’ve made it to the big leagues, haven’t I?

    (Also, I assumed from the ignorance that you were neurotypical, but from a Facebook search of your name, it seems that you might be Autistic. I’ll try and write towards a neurotype-neutral audience, in that case.)

    So, you confuse a few things. Let’s start with diseased, disordered and a burden vs. disabled. Autism is not a disease. It is not disorder. In the same way that gender dysphoria is not a disorder, yet is still identified as one in the DSM V. What I mean is that most Autistics and most gender non-conforming folks both refuse the disordered and diseased labels we’re given.

    But, at least as far as Autism goes, we still needs supports because we live in an Autism unfriendly world. Some need more than others. Those who do need fewer supports, like myself, aren’t “less Autistic” or “not Autistic” because we need fewer supports.

    I’m confused about you’re second sentence. But “each person so afflicted” [btw, highly ableist language] does not require federal funding. Some do, and that’s ok. Some don’t, and that’s also ok. As to the first half-comment about Autism Speaks, I can’t think of more than three Autistics who publicly support Autism Speaks. I’m sure there are more out there…but there aren’t many, and most of them have lots of internalized ableism that needs unpacking.

    As for your next two sentences, when did I say I was Asperger’s, or that I was not disabled? I was not diagnosed with Asperger’s Syndrome. I was diagnosed as Autistic (although, as I’ve said, I really couldn’t care less about official diagnoses), and I am disabled.

    Going off that, yes, I am Autistic, yes, I am disabled, and yes, I do not believe that a “cure” for Autism should be researched, should exist, or she be a priority. I also can’t even image what that cure would look like.

    Anyways, please email me if you want to have a well structured, informed, and non-offensive chat.

    -Best, Erika Lynn, the author

  • Tiresiess

    Mr Schafer, by telling autistic adults that we are not autistic you have as good as told my mother that she is a liar and a cheat. You have told *our mothers*, our fathers, our brothers, and sisters that they were telling lies. The fact is, there were autistic people *before* your child–and it is incredibly self-centered to say otherwise. For example, the Autism Society of America has been doing good work for autistic people DECADES before Autism Speaks showed up. The fact is, autism communities are *much bigger* community than just today’s parents. It is not unreasonable to include us, along with our mothers, our fathers, our brothers and sister at the public conversation negotiating for services too.

  • AutismAcceptanceDay

    Autism Speaks actually does not advocate *for* Autistics, Lenny. It purports to. It does advocate for “prevention and a cure for autism,” which is often counter to the desires of people who are the most affected, Autistics ourselves. Taxpayer dollars spent on autism are more likely to be shunted to programs of research that study mouse models and look for elusive “causes” of autism rather than providing any significant support or assistance to actual Autistic people. I am disabled. I am Autistic. I am against Autism Speaks’ damaging rhetoric that curtails our life chances when people believe it.

  • Tara Marshall

    I am also Autistic. I had major delays in my self-help skills and language as a child, but NO ONE ever talked about me as if I were hopeless in front of me when I was a child. I was shocked when the diagnosing doctor told my nephew’s father that he was severely affected and we should buy a helmet and start looking for a good institution. I ran his early intervention program myself, and my nephew has gone from “severely affected” to appearing like an Aspie.

    And don’t try telling me he was misdiagnosed. I’ve worked with Autistic children and run a support group for Autistic adults for over 11 years now, I can just “see” whether a person is ASD or not. I’ve got a client who they’re calling “At Risk for Autism,” because they don’t like to give the diagnosis until the child is 4, and that is allowing his parents to remain in denial, when he has one of the more involved cases I’ve ever seen. He NEEDS as much early intervention as possible, and he’s not getting it, because the professionals don’t want to give him the full diagnosis yet and because the state I live in cut EI funding.

    If Autism $peaks would speak respectfully of us and spend much more on their “Family Services,” they could potentially be of use. But I lost hope of that happening years ago. How would black people feel if a group called “Blacks Speak” refused to allow a single African American on their board or in any public position and advocated “curing” people of having black skin? If they refused to accept people of mixed ancestry as being Black? Such a group would be rejected as racist and dangerous, and that is PRECISELY what Autism $peaks does with Autistics.

    Not all Autistics will be “high-functioning” as adults, but that doesn’t mean that they can’t live happy, satisfying lives. It also doesn’t mean that the rhetoric they hear around them should be full of hopelessness and dread. NO CHILD should have to hear its mother talking about wanting to drive it off a bridge, like Allison Singer did in “Autism Every Day,” a promotional film for Autism $peaks.

    Presume competence, assume the child understands every word that you say – and offer it encouragement and EXAMPLES. Just like Deaf children grow up learning about Thomas Edison and children who are blind grow up learning about Louis Braille, and BOTH learn about Helen Keller, Autistics should be presented with examples from our history and community. Why aren’t classrooms having teachers talk about the lives and accomplishments of great probable Autistics of history, such as Isaac Newton and Albert Einstein as early as preschool? What if JUST KNOWING that people like them can make great progress (even if it comes with great effort) toward speaking and advocating for themselves can make a huge difference for how they feel about themselves?

    I’m not saying that life as an Autistic is all sunshine and rainbows – far from it. But the problems I have are those IMPOSED BY SOCIETY at my level of ability. If Neurotypicals (non-Autistics) are so high-flying awesome at “social flexibility” and say that I suck at it, why can’t THEY be the ones to adapt to me, why am I required to adapt to them all the time if that IS MY DISABILITY?! I want to see some of that vaunted social flexibility from them. I want to see a society where I am accepted for what I CAN DO, and not just denigrated for those things I have difficulty with.

  • Emily Paige Ballou

    “Asperger Syndrome is no longer considered a part of the autism spectrum.”

    Wrong. Asperger’s Syndrome was folded into the broader “Autism Spectrum Disorder” diagnosis. If you had an Asperger’s diagnosis, you are now considered to have a simple ASD diagnosis.

    “If you are not disabled, you are not autistic. If you don’t think autism needs to be fixed, then you are probably not autistic and you should stop using the label intended for the disabled.”

    I am disabled. I am disabled not because there’s anything intrinsically wrong with me or with the way my brain works, but because the way my brain works means that there are things, that the vast majority of people and society take for granted, that I cannot do. I am disabled because the way society, education, and employment situations are set up are often exclusive or hostile to people like me.

    (Do I think there should be better therapies and educational strategies developed to help autistic people better with our unique, specific challenges and deficits? Most definitely. But that’s not the same thing as a “cure.” MOST people have specific deficits and challenges they need help or attention for, and that’s not a reason why the kind of people they are needs to be eliminated, “cured,” or “fixed.”)

    I am autistic. I am disabled. And you wouldn’t be able to change either of those things without taking away a great deal of the perception and kinds of cognitive differences that make me who I am and which I value about my experience.

  • Turbulentbeauty

    “Asperger Syndrome is no longer considered a part of the autism spectrum. ”

    No, that’s backwards. As of the DSM IV Autism and Aspergers were two different diagnoses. Now, the DSM V has COMBINED them as a part of the Autistic Spectrum Disorder.

    Please go re-read the definition from the DSM V.

  • Turbulentbeauty

    Also, I will add that your whole thought process of a person not considering themselves a burden means they should not deserve advocacy. Have you not noticed the civil rights, feminist, gay rights, etc movements?

    Do you think any oppressed group considers themselves a burden? Yet they still needed advocacy since they were treated as less and deserved equality.

    Also, you do NOT understand Autism Speaks because they advocate for the erasure of autism, ignores autistic adults, and indirectly supports eugenics and violence against autistics. One of the directors even has a video where she discusses wanting to do a murder suicide, while her daughter is in the background.

    You expect autistic people to support THAT?

  • Anonymoused

    I am an individual with autism (yes, that is how I choose to identify, because autism does not define me; above all, I am a human.) and I AM lost. While I suffered little to no delays as a child, I find myself in a world where I do not understand the words and actions of those around me. I have been depressed since elementary school because I could find nothing in this life that I could understand until recently. While it’s great that YOU, as an individual have never felt lost, many of us who were not diagnosed as children have felt nothing BUT lost. So if somebody working to advocate for autism actually recognized and sympathized with how I have felt my entire life, I’d be happy. I’d feel as though my life is not just a giant mistake. This is why I appreciate Autism Speaks.

  • Anonymoused

    What a ridiculous metaphor — black is a color, a term designated by nonblacks to separate those with darker skin from those with light skin. Autism is the name of a disorder. What you just did was compare a neuroatypical disorder to the color of somebody’s skin.

  • A third opinion

    Erika,
    Thanks for your perspective on Autism Speaks, I agree that it places too little emphasis on family support. There is a huge disparity between how money is taken in through fundraising and the way it is spend.
    I take issue with your article because it seems you believe you speak for all autistic people. You do not give enough consideration to the fact that autism is a spectrum disorder and has a very wide range of manifestations. Over the years, I have met many, many autistics and experienced the true range of the diagnosis. I have met children with perfect speech, high intelligence and dreams of becoming astronauts. But I have also met many whose mental age is less than half of their physical age, who cannot communicate properly with the rest of the world and who will likely need assistance and care for the rest of their lives.
    While you may have had a certain experience, I think it is dangerous to assume that people whose autism presents itself differently from your own want the same things you do. You are independent, strong willed and don’t let your “official diagnosis” define you, which I deeply respect, but many whose autism is severely debilitating might want nothing more than a reduction of their “symptoms” to the point where they can function independently and communicate their feelings appropriately. You are claiming things on behalf of all autistics, but you don’t give enough overt consideration to the opinions of those on a different level of the spectrum than yourself.

  • Tara Marshall

    Autism is a name for a difference in neurology, just as terms of “race” refer to those of a different skin color. You ASSUME that a brain that is built more typically is always better. This is just as bad as racism.

    There are many times and places in which a mildly Autistic brain works not just as well as a typical brain, but better. If you don’t like Autistic people, you should get OFF the computer, because it was MY ancestors who created and programmed it. Literally. My father, who was nonverbal until he was 6, was a computer engineer.

  • Erika Lynn Abigail Persephone

    First of all, my Autism does, in part, define me. I am proud of my Autism.

    Yes, I am highly intelligent, and I give the outward appearance of high functionality (though, as with most Autistics who are labeled high functioning, we can prove that’s not the case at least half the time). And I do not purport to speak for all Autistics. But not more than a handful of Autistics support Autism Speaks. Many non-verbal Autistics and Autistics often categorized as low functioning have communicated their dislike of Autism Speaks over the internet.

    “Those ‘symptoms’” you talk about do not need to be cured–we need to push for acceptance, to help create a society that recognizes those differences, and embraces them, that works to make life more accessible for everyone.

    Yes, I’m highly intellectual, but that does not mean I cannot speak to the needs of the rest of my community. My community does not need Autism Speaks.

  • Anonymoused

    You clearly have some kind of biases if you’re reading that nonsense in my message. I don’t like Autistic people? I AM an autistic person. As is my older brother, and one of my friends. You need to brush the dirt off your shoulder. You are harboring a lot of hate and blowing it off to anybody who bothers you in the slightest. Also, your response wasn’t relevant to my message. Your metaphor is still racist.

  • Tara Marshall

    And just as skin color ranges from light to dark with variations toward red, yellow, and so on, Autism ALSO ranges in how it affects those of us with it. Acknowledging that these differences exist is NOT racism, in fact, studies show that the most racist communities are those that refuse to discuss the issue.

    We’re both lucky – we’re able to communicate on forums like this, and so are many of the other commentators. You know what I’d LOVE? I’d LOVE to take some of these people who insist that ALL Autism is just a difference, not a disability, into a couple of the classrooms I work in. I’d like them to try to find a way that Autism is NOT disabling for a person in their teens and twenties who is not only nonverbal, but is unable to use alternative communication methods (we’ve tried it all, everything from low tech pictures to high tech eye-gaze devices), in diapers, and self-harming, most of whom are on several medications that only blunt the effects of their severe behavioral problems.

    At the same time, of course, many of us did experience the same issues (frequently to a somewhat lesser extent) earlier in our development. I used echolalia as my primary form of communication until I was nearly 8. I REMEMBER how frustrating it was to be unable to communicate.

    For that matter, my nephew was primarily non-verbal until he was 4 1/2, and he hasn’t had an aggressive outburst since he became a fluent communicator when he was 5. This seems to the the case for a lot of us – the ability to communicate with others means that we stop having so many problems.

    So who else is there to speak for other Autistic people? Their parents, who don’t have a clue what the problems have their basis in most of the time? The researchers, who base everything off of objective data that only looks at appearances, leading them to make ridiculous comparisons between Autistic people and sociopaths? Or US, the people who actually have some experience with these problems ourselves – who can TELL them, in many cases, why we had those problems, and hope that our advocacy assists the parents, researchers, educators, and etc. with their own children or clients.

  • Erika Lynn Abigail Persephone

    For many years, I did feel disoriented. I still do. I am not a lost child though, and as a whole we are not lost, in the sense that we are out of their reach, the reach of society. I think the disorientation though happens to nearly all of us, living and growing up in an Allistic world.