Mental illnesses have a long and frankly terrifying history revolving around how they are seen and treated. While it might seem common for us now, treatment for conditions only started to be considered humane around the 1930’s. Before that, the way people with autism were treated was more like the “other” or sub-human. Tactics such as lobotomization and forced sterilization were common to “treat” these relatively harmless conditions. Hospitals for people who are differently abled were more like places of torture.

Thankfully, in my generation, we’ve improved how we see such disorders. We’ve started to learn to accept that differently abled is not disabled. Society and laws have evolved to be much more aware of the normalcy of autism. We are starting to see positive representation in the media.

As an autistic person myself, I’m thrilled to be living in a time when my different behaviors and needs are recognized,  and I consider myself lucky that I’m in a community that accepts me, and who don’t treat me differently, at least not consciously. 

With that said, why do people associate autism with a puzzle piece, something that is clearly offensive?  Not only do I not want to see myself as a puzzle piece, the associations with Autism Speaks, an advocacy group with a checkered past, needs to be severed.

According to another advocacy group, Altogether Autism,  “The puzzle piece also represents viewing us as ‘puzzling’ or a ‘mystery’.”

And, they do have a point. If people see me as a mystery or a puzzle, it is disheartening. I don’t want to be seen as someone who can’t be understood.

Because of this, the autistic community has actively taken a stance against the puzzle piece. The symbol has since been replaced with the rainbow infinity symbol,  boycotting the puzzle, avoiding organizations that use the puzzle symbol for autism.

Former Altogether Autism Autistic Advisor, Paula Jessop said, “For many years adults have openly, publicly discussed their desires for autism awareness to shift to an approach aimed at creating acceptance for us in society. Continuing to ignore our wishes, to use symbols which may remind us of our discrimination in society or that people sometimes do kill us because of our autism, IS disrespectful.”

Of course, taken at face value, the puzzle symbol has to go; however, there is a second issue, one with far more serious implications. It has everything to do with the history with autistic treatment and how that is wrapped up in the Autism Speaks organization.

Autism Speaks does not let anyone speak for themselves

Autism Speaks is perhaps the most universally well known non profit advocating for autism research and support. It uses the puzzle piece as its logo.

The Autism Speaks home page seems harmless enough, but I believe this is an organization that puts on a mask of acceptance while belittling and even harming the people on the spectrum.

Autism Speaks’ mission statement is “Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families. We do this through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.“

This is a positive mission statement, but actions speak louder than these words.

The leaders of Autism Speaks made some very questionable choices, choosing to merge with organizations that wanted to cure autism, something that remained prevalent in their mission until 2016. Autism cannot be cured. Many autistic people are fine with their conditions, and the notion of being cured is considered offensive.  

Another horror is the 2008 video on their website called “Getting the Word Out.” 

In that video, the narrator said, “Living with Autism can be a very cold and lonely life for a child. Not to mention, very challenging for the whole family. One day that child living with autism will grow into an adult living with autism.”

Yes, living with autism is tough, but I wouldn’t consider it as harsh and unforgiving as they imply. And that part about the family? Last I checked, we aren’t sociopaths. Many autistic people were unhappy with the verbiage, and autistic people even made parodies in response. 

In September of 2009, Autism Speaks made a short called “I Am Autism” that actively insulted autistic people. It’s depicted as a horror film. The fundraising video is depicted as one might see a commercial advocating against drugs, actively comparing autism to AIDS, cancer, and diabetes. It said that autistic people have no chance of having a happy marriage and that they have no ability to control money.

It was aired at a world wide autistic event, which only added salt to the wound. Autism Speaks has apologized for the videos, and, considering this was in 2008 and 2009, the understanding of autism has grown exponentially.

Yes, living with autism is rough, but you can have a happy marriage and control your finances with autism. We have the ability to be happy. You could replace autism with conditions such as schizophrenia or bipolar in this video, and it would make a world of more sense, which is alarming. This is what we call fear mongering.

Imagine watching this as a young child who understands that they have this condition, knows that it puts some strain on their lives, but are unable to change that. Imagine predicting that the child grow up sad, alone, and poor because of something you have no power to change, that you’re going to ruin your parents’ lives.

Maybe that’s why my parents never really told me I was autistic when I was first diagnosed, one year after this video came out. I would have been traumatized.

And it only gets worse from here that just sours the image of the puzzle piece even more.

Falsely linking vaccines to autism

I think the best way to describe the relationship between autism and vaccines is through that one clip from Avatar the Last Airbender (if you know, you know), because no matter how much we try to shake people and tell them that vaccines don’t cause autism, they’re just going to ask us if we’re going to tell them next that the earth isn’t flat.

As a kid, I was scared of the needle for years, and, even now, I need someone to go with me whenever I get a shot.

Autism Speaks CEO, Bob Wright, decided to add fuel to this fire by stating that “It’s possible Autism is caused by vaccines.”  

Autism Speaks had to backpedal hard here, and the retraction only happened in 2014 and 2017. 

And the worst part is, they’re supposed to be educating people on what autism is and how to address it.  Again, the puzzle piece becomes more of a symbol of this wrong-headed approach, rather than finding the perfect fit in the larger puzzle.

Promotional videos keep emphasizing the negative

Autism Speaks has a video called “Autism Every Day” mother Allison Singer says, “Parents who are forced to put kids in schools that are completely overcrowded and 12 kids and one teacher, and the kids don’t make progress. But I remember that was a very scary moment  for me when I realized, I had sat in the car for about 15 minutes and actually contemplated putting {REDACTED} in the car, driving on the George Washington bridge.”

Yeah, that’s real. This mother said it would be easier to kill her daughter than to send her to an overcrowded school. Autism Speaks promoted this video relating to a very sensitive and misunderstood group of people. And this woman had her child in the background. 

I don’t even have to ask my mom if she ever thought about this with me.

And this woman was a co-founder of another autistic organization, Autism Science Foundation, which Autism Speaks merged with. She did state that she regretted her phrasing, but the phrasing isn’t the issue here. It’s the point that she was making! There is no positive thing to draw from what she said, and it makes her apology hollow. The fact that Autism Speaks allowed that to be in the video is more than upsetting to me.

Representation? What’s that?

Autism Speaks has no autistic member on its board of directors.  Autism is a condition where one size does not fit all. To help people, it’s better to have a frame of reference from someone who knows.

Having a close family member or friend who has autism doesn’t really count, because they aren’t the person with the condition. They don’t know first hand what the struggles are like. My sister couldn’t tell you all you need to know about how to handle autism because she’s never had to deal with the complications on a first hand basis.

Of course, once there was one. His name was John Elder Robinson. He resigned in 2013 for this very issue. 

Autism Speaks has supported torture.

There are plenty of different services to help people manage their symptoms. They can be assistive technologies, audiology or hearing service, speech and language services, counseling and training, medical services, nursing services, nutrition services, occupational therapy, physical therapy, and psychological services. Some use these services more than others. What matters is that these services are there for those who need them.

 I have benefitted from some of these services though I am considered high functioning. They’re a way to be better understood.

Although they no longer support the Judge Rotenberg Center, this center is authorized to use electroshock therapy as a treatment to manage autism. Autism Speaks endorsed this treatment for autism by putting them as a resource on the cards they handed out on an autism walk in 2013.

The Center has been cited for wrongful deaths.  It’s no secret what they’ve done. People had known about this for years, so there is no excuse for Autism Speaks to have endorsed this torture out of ignorance. They’ve since moved away from the practice and the center, And this place is still open.

Autistic children and families need better advocacy and a better symbol for their unique needs and abilities.

Wearing blue on Autism Awareness Day (an event that Autism Speaks spearheaded) is also offensive with all of the horrible things Autism Speaks has done in the past.  It is often the color of grief and depression, perpetuates very wrong misconceptions, and awareness is not the same thing as acceptance. I agree with the campaign #WearRedInstead.

Red is the color of love and acceptance, something that we need more of every day.