Autism Speaks is one of the largest and most well known, ASD non-profit organizations in North America. Every April they urge us to ‘light it up blue’, and to donate to help fund services for autism families. They continuously harp on their mission to promote acceptance and awareness of autism. Autism Speaks uses their large platform to help the autism community on a legislative level. They’ve recently introduced a bill to Congress that if passed, would improve and increase state funding and services for those with autism. Another way they contribute to the autism community is by funding autism related research. I recognize that Autism Speaks has contributed a lot to the autism community, and I am no way trying to demonize the organization or the people who support it. However, I think it’s important that people know the controversy surrounding Autism Speaks.
In the beginning I was very interested in what had looked to be, a trust worthy source of helpful information. At first glance, I noticed an overwhelmingly large number of autism parents in support of Autism Speaks. During Autism Awareness Month, places like grocery stores and coffee shops help collect donations in support of Autism Speaks. I initially didn’t hear much negative backlash about the organization. It wasn’t until a year or so that I had begun to look into other non-profit organizations, and began reaching out and connecting with people with autism.
That’s when I noticed that something really stuck out to me. With all the great people I’ve met, and have come know on this journey, I hadn’t come across any people with autism who supported Autism Speaks.
In fact many of them spoke of them in anger and disgust. I began to realize this wasn’t some sort of conspiracy theory, or some kind of misinterpreted information. The truth is Autism Speaks is doing more harm, than good.
Only a Small Percent of Donated Money Goes to Family and Services
Autism Speaks raises around 50 million dollars a year in fundraising and donations. A majority of people who donate to Autism Speaks assume a good portion would go towards helping autism families and supporting people with autism. Unfortunately, that’s not the case. Last year less than 2% of funding had gone towards ensuring ASD families and people are receiving the help and services they need. Prior to that, it was only 4%. A majority of the budget is spent on research and fundraising. While research is important for us to better understand autism, their focus is on curing and eliminating autism. Majority of their research is geared towards the future of autism, instead of focusing on bettering the lives of those affected now. On top of the small percentage that actually goes towards providing services and support for those who need it, at least 13 individuals receive a salary between 200k-450k. Numbers like this are leaving people wondering how genuine their motives are.
2. Their Choice of Advertisment Hurts The Autism Community
Autism Speaks receives a lot of back lash on their choice of advertisement. In 2009 they produced and released a PSA video called ‘I Am Autism’. What made the video so controversial is what is being said. The video claims that, “Autism works faster than pediatric AIDs and cancer combined.” and states, it’ll “ruin your marriage and bankrupt you.” The video portrays people on the spectrum as a burden and fosters fear instead of acceptance. The video continues on to makes comments about how autism will “embarrass” you and make family outings impossible. I couldn’t believe what I was hearing. Here’s a transcript.
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’re 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, birthday party, or 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 am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening? (ASAN 2009.)
2013 Suzanne Wright co-founder of Autism Speaks, released a written “call to action” on the “epidemic” known as autism. In this letter she compares things like, children having autism to a person being “gravely ill” or “missing”. She refers to autism as an “epidemic” and a says that it is a “monumental health crisis”. By this, she is only adding to the already damaged stigma of autism. Autism Speaks talks about autism as if it should be feared, and is using their large platform to promote negative stereotypes, and collect on people’s pity.
3. Autism Speaks Endorses The Judge Rotenberg Center
The Judge Rotenberg Center is a live-in facility in Massachusetts, for individuals with severe disabilities. The center is known for its no-rejection policy, and because it’s the only facility in the U.S. that still uses electroshock therapy. The JRC uses an electroshock device called the graduated electronic decelerator (GED). This device sends electroshocks to a person’s body, and operated by remote. They are made to wear these constantly, and can be subjected to shock at anytime. The purpose of the shock is to eliminate undesirable behaviors, in hopes a person will associate the behavior with the shock, and discontinue the behavior. This practice is called aversion therapy. Various people have spoken out about their treatment while at the JRC. Stories of being shocked for things like stimming, being too loud, refusing eye contact, and refusal to take off a coat. These shocks have lasting effects, well after the pain has subsided, including things like PTSD and burns to the skin.
The JRC has had numerous controversies in its history including several lawsuits, a viral video of the torture of a student, and 6 deaths.
Yet, a few years ago Autism Speaks listed the JRC as a viable service provider in its Walk Now For Autism Speaks event in D.C. I won’t go into much detail of the abuse that has gone on, and continues to go on at the JRC because it includes subjects like torture and ableism, which I know can be triggering for some. If you’re interested, there are several testimonies and you can find online in regards to the inhumane treatment of the JRC.
4. They Don’t Include People with Autism in Positions of Power
Until recently Autism Speaks excluded people with autism from its Board of Directors, and from any position that holds power. Long story short, they’ve been making decisions for what’s best for people with autism, without actually including people with autism. In 2013 Author John Elder Robinson resigned from roles with the organization Autism Speaks. Robinson volunteered and worked with the organizations Science and Treatment Board. Upon the release of I Am Autism, Robinson felt compelled to resign and cut ties with the organization. He released a public letter explaining how he felt the organization was doing more harm than good, due to the way they choose to portray autism. In 2015 Autism Speaks added two new members on its Board of Directors. While this may be a small step in the right direction, people still feel their views are ablest and are guilty or portraying autism in a negative way.
Autism Speaks is only one of many ASD non-profit organizations. There are so many other non-organizations that are worthy of your support and donations. I am fully aware that every charity and non-profit organization has its own unique goals and mission. It’s very clear that Autism Speaks is geared towards parents and caregivers of children with autism, research for prenatal testing and finding a ‘miracle cure’ for autism, and ‘spreading awareness’. Since all of this controversy, Autism Speaks has spoken out and said they are working on better serving those with autism. They added a new section to their website labeled “For the Record”. This is them explaining they have refocused their mission, in hopes of creating a more of an impact. They then go on to explain why they’ve chosen to remove the word “cure” from their mission statement. Also they restated their position on vaccines, and the use of aversion therapy. No one is perfect. And while they have made strides in the right direction, I still can’t in good conscious support them.. When you know better, you do better.
My purpose is not to demonize Autism Speaks and those who support them. I in no way think less of a person who supports Autism Speaks.
I just think it’s so important people know the facts, and that are other deserving and inclusive. All of this started because I was curious to why Autism Speaks isn’t generally accepted by the autism community, and took the time to ask. If you want to be an ally and support people who are autistic, be accepting and inclusive. Support charities and non profit organizations that includes the voices of people with autism, and are geared towards supporting people with autism. If anyone is interested in any autism friendly non profits I’ve listed a few below.