April is coming, which means stores will have puzzle pieces everywhere, places will be lighting up blue, and walks for the cure will take place across the country. All of this in support of autism awareness with most of the funds going to Autism Speaks.
Most likely, as some point throughout the month, you will see a variety of advertisements and awareness campaigns from Autism Speaks as well as be asked to donate some money. Maybe it’s just buying things that donate a part of the proceeds.
Before you donate, please take a moment to look into this organization and what it’s awareness and fundraising is really doing for the people it claims to support.
While Autism Speaks is the most recognized autism nonprofit, many autistics are strongly against this organization with many calling it a hate group. Let’s explore some of the reason’s why.
Where Does All the Money Go?
The above flyer provides a break down of where Autism Speaks money goes and why this is problematic. This is based off their 2010 financials. Below is a break down based on their 2014 financials. As you can see, less goes towards research now with much more going to advertising while the percentage going towards family services actually decreased.
Less than four percent of their budget goes to actually helping people with autism, while five times that is spent on salaries, benefits and payroll taxes.
What Is Being Researched?
While 13% of funds go to research, the subject matter of the research being funded is often brought into question.
As stated in their mission statement, Autism Speaks is “dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.”
The research that they fund looks to prevent or cure autism. A great deal of autistic people, both speaking and non-speaking, find this deeply disturbing. Autism is a pervasive developmental disorder that is present from birth. Autistic brains function a bit differently than those of non-autistics which shapes their experience of the world.
The autistic brain develops differently from birth. This means that autism is just another way of seeing the world. The different ways the autistic brain develops effect an autistic person’s language and communication, cognition, sensory processing, motor control, and social behaviors in certain predictable ways. All of these differences, together, make up a developmental disability we call “autism.” Autism is disabling because our society is not designed to work for people with autistic brains.
Many people who advocate for a cure do so because they want to alleviate the suffering of autistic people. Seizures, GI issues, and food intolerances are often brought up as aspects of autism. While these conditions have greater prevalence among autistics, these medical conditions are separate problems from autism. Just as someone can be diabetic and asthmatic without the two being related, someone can be autistic and have epilepsy without the two being related. Curing autism wouldn’t get rid of these conditions, but treating them can help make life more enjoyable for the autistic person.
In regards to a cure, Creigh Farinas, in conjunction with her autistic sister Caley, says:
Autism isn’t something that you can get rid of it without changing who a person is at their core. Autism is a neurological difference that inherently shapes an autistic person’s identity, perspectives, dreams, and desires.
As my sister put it: “Whenever you tell an autistic person they should be cured, you’re telling them that they shouldn’t be them.”
Autistic activist Anya Ustaszewski explains:
My abilities, challenges and perception of the world all go hand in hand. If I were to be “cured” of my autism, the person that I am would cease to exist.
There are many things that can and should be done: they include changes to legislation to ensure that buildings are “autism friendly” such as a legal requirement for low arousal design, changes to noise legislation to reduce the sensory overload that is often experienced by autistics, especially those with hypersensitive hearing. Less visual clutter, better anti-discrimination laws and a legal right to assistive technology and communication devices would also help us.
In his 1993 article “Don’t Mourn For Us” autistic advocate Jim Sinclair states:
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 pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. 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.
Curing autism would mean eliminating autistic people rather than making their lives better. This goes hand-in-hand with Autism Speaks research towards prevention. Much of their research is aimed at finding genetic markers for autism that could be used for “prevention.” As Creigh Farinas explains:
The leading candidate is a genetic screening in-utero, in which case, as with Down Syndrome, we could see an option for an autism “cure” through abortion of fetuses suspected to have autism.
And fundraising for this – the only current viable option – rather than fundraising to help families, sounds a lot like eugenics to me
Autistic blogger Foxtears says in “Autism Speaks – hate speech and eugenics”:
The majority of reputable research indicates that autism is genetic, caused by either inherited genes or by new mutations that happen in gametes or newly forming embryos. What does this mean for an autism “cure”? Well, it means it won’t be a cure, it’ll be prevention in the form of prenatal testing and encouraging parents to terminate pregnancies that might result in autistic children. I’m pretty pro-choice, if you don’t want a baby, don’t have one, but I take a huge issue with encouraging the termination of intended pregnancies on the grounds that you’ll get someone with a neurotype you didn’t want. Wiping out a group of people by stopping them from being born is called genocide.
I’ve been sitting here for the past half an hour trying to figure out how to explain why eugenics is a bad thing which I am at a loss to do. I’ve realized that if anyone reading this genuinely thinks it is acceptable to eliminate an entire group of people then I don’t think there is anything I will say that will change their mind.
Instead of investing time and money into researching a cure or prevention, research into services that can help autistic people and treatments for comorbid illnesses would be a much better use of resources. Autistic author John Elder Robinson notes:
Two-thirds of the human lifespan is spent as an adult. With autism being a lifelong issue, we should be balancing our research accordingly…The hundreds of millions we have spent on autism research in the past decade have had precious little beneficial effect on families and individuals living with autism today. We need to recognize that the job of research isn’t done until autistic people are actually seeing a benefit.
Is Autism Awareness a Good Things?
As we saw earlier, about 44% of Autism Speaks’ budget goes towards advertising and marketing, in other words, awareness campaigns. This includes all the puzzle pieces, blue merchandise, and advertisements.
On the surface, awareness seems like a good thing. After all, how can we help autistic people if we don’t know about autism? Unfortunately, the brand of awareness put out by Autism Speaks is not productive for autistic people. Actually, it’s rather harmful.
Autism Speaks frequently frames autism as a tragedy, a burden, a theif, an epidemic, and much more. What follows are a few excerpts from various awareness materials from Autism Speaks and some commentary from autistic activists:
I am autism. I’m visible in your children. But if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, “Who will take care of my child after I die?” And the truth is, I’m still winning. And you’re scared. And you should be. I am autism. You ignored me. That was a mistake.
-2009 PSA “I Am Autism“
“If three million children in America one day went missing – what would we as a country do?
If three million children in America one morning fell gravely ill – what would we as a country do?
We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.
We’d leave no stone unturned.
Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.”
As people on the spectrum have struggled to overcome years of stigma and negative stereotyping, the group has framed their condition in terrifying and dehumanizing terms. Its 2009 video “I Am Autism,” which debuted at the United Nations, portrayed autism as a creepy stalker: “I know where you live, and guess what? I live there too. I hover around all of you… I work faster than pediatric AIDS, cancer and diabetes combined… I will plot to rob you of your children and your dreams.”
The group’s co-founders, former NBC Universal Chairman Bob Wright and his wife, Suzanne, have repeatedly referred to children on the spectrum (including their grandson, Christian) as “missing,” as if they’d been kidnapped. The group’s PR messaging has also reinforced the misconception that autism is a destroyer of marriages, though research shows that divorce rates are no higher for the parents of autistic kids.
–Steve Silberman “Autism Speaks Needs to do a Lot More Listening”
Yet their rhetoric is not merely limited to fear-mongering, but also indisputably crosses into the territory of the unconscionable. Former Autism Speaks board member Harry Slatkin, whose wife, Laura, continues to serve on the Board of Directors, stated in an interview with Town and Country while still a board member that sometimes he hoped their autistic son David would drown in the backyard pond rather than “suffer like this all his life.” Evidencing a pattern of similarly violent rhetoric, Autism Speaks is also responsible for the 2006 PSA “Autism Every Day” in which their then Vice President states on camera that she considered putting her autistic daughter in the car and driving off a bridge, and that the only reason she refrained from doing so was because her other, non-autistic daughter would have been waiting for her at home—her autistic daughter was in the room as she made these statements. Furthermore, the producer of this PSA explicitly admitted that the film was intentionally staged to portray negative images of autistic people and their families.
– Lydia Brown “Co-Opting the Movement: Autism Speaks, John Elder Robison, and Complicity in Oppression”
A mother describes wanting to drive off a bridge with her autistic child, and only choosing not to do so because she also has a neurotypical child. As if expressing that sentiment isn’t enough, she says it while her (presumably autistic) child is playing behind her. As many nonspeaking Autistic people have written in various blogs, being nonverbal does not have any bearing on whether a person can hear and understand what is being said to or about them. Even not being able to respond in a way that other people can understand doesn’t exclude the possibility (even probability), that a person can understand what’s going on around them. In all likelihood, this child just heard and probably understood her mother say that she would have killed both of them if it wasn’t for a normal sibling. How much must that hurt?
-Foxtears “Autism Speaks – Hate Speech and Eugenics“
Does Autism Speaks Listen to Autistics?
One of the main tenants of the disabilities rights movement is “Nothing about us, without us.” In other words, decisions, activism, and campaigns for disabled people should involve people with the disability in question in a balanced and conscientious manner.
An organization dedicated to women’s health was run entirely by men and operating without knowledge of the female reproductive system would be very ineffective.
A nonprofit focused on supporting the lives of black people run only by white people would be offensive.
Yet, Autism Speaks, the most recognizable autism organization, is run by non-autistic people. Throughout the history of the group, the amount of autistic people who have served in high ranking positions can be counted on one hand.
Former member of the Science and Treatment Boards of Autism Speaks, John Elder Robinson said the following in his resignation letter:
I stayed on board because I felt the fundraising power of Autism Speaks could be directed toward research and services that would be truly beneficial to people living with autism today. I felt the occasional public relations gaffe was tolerable if we began delivering therapies that would really help our community. I expressed my views to that effect in public, at science reviews, and to Autism Speaks staff.
One of the things I’ve said all along is that I believe change is best accomplished from inside, through reasoned discussion. Recent public statements from Autism Speaks have shown that my ideas have not taken hold among top leaders, despite my best efforts.
This latest op-ed piece is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent.
Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.
Who is Autism Speaks Affiliated With?
Autism Speaks works in conjunction with many organizations and facilities. Some of these partners are good, others are problematic. Most notable is the Judge Rothenberg Center for Autism.
ASAN said the following in their joint letter to the sponsors of Autism Speaks:
Autism Speaks has promoted the Judge Rotenberg Center, a Massachusetts facility under Department of Justice and FDA investigation for the use of painful electric shock against its students. The Judge Rotenberg Center’s methods have been deemed torture by the United Nations Special Rapporteur on Torture (p. 84) and are currently the subject of efforts by the Massachusetts state government and disability rights advocates to shut the facility down. Despite this, Autism Speaks has allowed the Judge Rotenberg Center to recruit new admissions from families seeking resources at their fundraising walks. We believe this is not the type of action you anticipated when you agreed to provide support to Autism Speaks events.
Below are descriptions of the “treatment” provided by JRC:
Students are forced to wear electrodes attached to various parts of their bodies, and whenever they engage in any unwanted behavior (anything from head-banging to flapping their hands to getting out of their seat without permission), staff press a button that causes an electric shock.
–Lydia Brown “An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center”
Some actual behaviors I was shocked for were: covering my eyes with my hands, covering (pressurizing) my ears, tic-like body movements, wrapping my foot around the leg of my chair, not answering staff within 5 seconds, saying the word “no”, shaking my head, tightening my fingers for more than 2 seconds, waving my hands in front of my face, 5 verbal behaviors in an hour (talk to self, repeating, crying, bizarre speech, nagging), tensing up, getting out of my seat without permission, not following directions, and attempt to remove restraints.
Earlier in the day, a staffer told Andre to take off his jacket. When he said no, another staff member pressed a button to activate the electric-shock machine attached to Andre’s body with taped electrodes. Andre screamed and threw himself under a table. Four adults dragged him out, and strapped him, facedown, into four-point restraints. Over the next seven hours, Andre was shocked 31 times with a device that emits 45.5 milliamps of electricity — a shock more than 15 times as powerful as the stun belts designed to incapacitate violent adult prisoners. Staff members recorded the reason for each shock — all but two entries on his recording sheet list tensing up or screaming. In the surveillance video, Andre can be heard pleading for staff members to stop. At the Rothenberg center, in Canton, Mass., this is called treatment.
–Lydia Brown “It’s illegal to torture prisoners and animals, but not disabled people”
What Do We Do Now?
If you’ve stuck around this long, you may be wondering what you can do to support autistic people instead of donating to Autism Speaks.
Acceptance vs. Awareness
Rather than raising awareness for autism, which does little to help autistic people, we should be advocating for autism acceptance.
Autism acceptance means accepting autistic people for who they are rather than trying to force them act normal.
Autism acceptance means finding ways to make life more accessible for autistic people.
Acceptance is an action. Acceptance means doing everything you can so that your autistic child will grow up into the best autistic adult they can be, supporting your autistic friends in a world that is not designed for us, and working to make our world a better, more inclusive, safer place for autistic people of all ages and abilities.
–Autism Acceptance Month, ASAN
“Autism awareness really does me very little. It is not honoring or making my life easier. So many believe I am unintelligent even though I write well. Until they see me writing, it is not what they assume. What good is awareness if it doesn’t tell people the truth?”
–Emma Zurcher-Long , non-speaking autistic activist
Autism Speaks does a lot of “raising awareness”. Sad to say, awareness is not helpful to us. Awareness comes with stigma and stereotypes and makes our everyday lives harder. Awareness makes it easier for us to be singled out by people who will do us harm. Lei Wiley-Mydske, an autistic parent of an autistic child, has written about how Autism Awareness has made it harder for her to advocate for the needs of her child. Autism Awareness invites discrimination. What the Autistic community wants most is Autism Acceptance, respecting Autistic people as the authority on their own needs.
-Foxtears “Autism Speaks – Hate Speech and Eugenics“
–Autism Acceptance Month, ASAN
Walk In Red
Rather the #lightitupblue, show your support for autism acceptance by wearing red throughout the month of April as part of #WalkInRed.
Edit 3/28/16: Campaign leadership has decided to change the tag to #REDinstead in order to be more inclusive of those with physical disabilities. Other hashtags that will be used include #LightItUpRed and #LIUR
Organizations To Support
If you want to donate to an organization that helps autistic people consider one of these autistic/disabled led organizations:
- The Autistic Self Advocacy Network
- The Autism Women’s Network
- Parenting Autistic Children with Love and Acceptance
- The Thinking Person’s Guide to Autism
- “Autism Speaks”- but Should Everyone Listen?
- They Don’t Want an Autism Cure
- 2014 Joint Letter to the Sponsors of Autism Speaks
- Autism Awareness is Not Enough: Here’s How to Change the World
- New Autism Speaks Masterpost (Updated 6/20/14)
- Fix the charity that wants to ‘fix’ autism
- Awareness vs Acceptance: Do Words Matter?
- Autism Speaks: Time to Listen by Autistic Self-Advocate Amy Sequenzia
- “Presume Competence” – What Does That Mean Exactly?
- I Don’t Want Your Awareness
- Autism Resources/Information Masterpost
- Real Consequences
- Judge Rotenburg Center
- The FDA Hearing and the Judge Rotenberg Center: What You Should Know
- Footage of Judge Rotenberg Center torturing a person with a disability aired in court (Graphic)
- judge rotenburg center
- Crusading Against Hate: Why I #BoycottAutismspeaks
- Why Autism Speaks Doesn’t Speak For Me
- It Is Time To Revive An Autism Movement