ArtfullyAutistic
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ArtfullyAutistic

Autism Speaks: Deception, Eugenics, and Abuse

How this insidious organization controls the narrative of autism, and what to support instead.

An important message from the entire Actually Autistic community. Autism Speaks Doesn’t Speak for Us.
-= Image Graphic Edits and Image Manipulation by Keira Fulton-Lees, As.D. =-
-= Image of Square Peg/Round Hole Character Image by fliegenwulf on shutterstock.com =-
-= Image of Blue/White World Map by
titoOnz on iStock-Getty Images =-

If you search up charities for autism, Autism Speaks will probably be at the top of the list. If you use Instagram’s donation feature to fundraise for a charity, Autism Speaks is one of the first “popular charities” to pop up. Thousands of well-meaning people who wish to support the autistic community “light it up blue” and proudly display the puzzle piece symbol. These are good people, not evil autism haters. Autism Speaks is a master at publicity. That’s where most of its money goes — making its brand image look better. It’s no wonder people fall for it. I did myself.

Yet Autism Speaks is one of the worst organizations to donate to when it comes to supporting autism rights. Their agenda may not be as frank as some others. You won’t find any articles screaming about the evils of autism and vaccines. They supported the anti-vaxxer movement for several years but have since attempted to wipe it from their image. Sesame Street’s partnership with Autism Speaks features ads that emphasize acceptance and love for autistic people. If that’s all I knew of Autism Speaks, I would have thought they were a great organization.

But their clean, civilized image is what makes Autism Speaks so insidious. It lures unsuspecting people in and promotes dangerous ideas about autism. Their short-film “Autism Every Day” is notorious, and most people in the autistic community know about it. In the video, a mother tells the story of how she considered driving her autistic daughter off a bridge to kill her, and the only reason she didn’t is because she had a neurotypical child. She says this while the daughter is in the room, fully capable of hearing her. Later, the neurotypical child she mentioned laments that he wishes he “had a sister without autism.” Autism Speaks also released the ad “I Am Autism,” which claims that autism will ruin your marriage and steal your child, as if an autistic child isn’t a real child but a changeling demon.

These videos were made many years ago, and Autism Speaks has since claimed that they are no longer seeking an autism cure. Yet if we look at their research, it’s hard to conclude their intentions are pure.

Autism Speaks’ Budget. Source: Autism Speaks 990 Non-Profit Tax Exemption Form, 2018. Research: 27%. “Awareness” & Lobbying: 48%. Fundraising: 20%. Misc. 4%. Family Services: 1%.

The Money Doesn’t Help Anyone

Autism Speaks claims to work to provide services for families, and it would be wonderful if they did. But only 1% of their budget goes to family services. 48% goes to autism awareness ads to further their brand. 20% goes to making more money. And 27% goes to “research.”

Keep in mind that Autism Speaks is claiming to help families with autistic children. These families are often left without support or insurance to cover the best care their children need. Thus parents are left without support for their children and must figure it out on their own. The best way to help them would be to work on providing helpful therapies, counseling, and information.

Even if you agree with their message, your donation would be pointless. It doesn’t go to therapies which help families, nor does it go to special education programs, community living centers, useful research that studies the best ways to help autistic people thrive, or anything else that helps autistic people. At best, the donation is a waste. At worst, it harms the autistic community.

You may have noticed the section on research. This could mean many things, including research into the best therapies and ways to help autistic children. But if you do a bit of digging on their website, it’s easy to find out what the real intentions of this research are.

Eugenics

Illustration of person flaking away and disintegrating

In the “Our Work” section of the Autism Speaks website, one of the goals listed is “Advancing Breakthroughs in Autism Research.”

They claim to have “One of the world’s largest open access autism genomic databases.” If you click on the hyperlink, you get an article talking about how “Online tools enable scientists worldwide to explore and share DNA clues to autism.”

Some quotes from the article:

“This could lead to breakthroughs in identifying the causes and subtypes of autism.”

“The portal’s tools also allow researchers to find the variations that have been discovered in a particular autism associated gene; gauge the expected severity of a gene change; and determine how often a particular gene change is inherited from a parent versus arising spontaneously (de novo) in a person affected by autism.”

The end goal of this would allow pre-natal screening to check if embryos are autistic. Mapping the autistic genome does nothing to help autistic people in real life. Diagnoses can happen without genetic screening, and knowing what our genome is doesn’t help us have fulfilling lives. The only purpose to working so hard on mapping the genome is to make it possible for pre-natal testing to identify if an embryo is autistic before birth. And if pre-natal screening were available, it would trigger eugenics against autistic people.

This already happened with Down Syndrome. In the U.S., 67% of pregnancies are terminated when the parent finds out the child has Down Syndrome. In France that number is 77%. In Denmark, it’s 98%.

Eugenics, according to Merriam Webster, is “the practice or advocacy of controlled selective breeding of human populations (as by sterilization) to improve the population’s genetic composition.” Creating a database on genetic composition for the purpose of screening for a certain trait, then having 98% of all instances of it being wiped out, is eugenics.

I am pro-choice. I believe a person should have the right to terminate an unwanted pregnancy. But this is different. This is not a case of a person terminating an unwanted pregnancy because they don’t want to raise the child, or because giving birth might cause harm, but a case of someone deciding to have a child, then aborting that child for the sole reason that they don’t have the “correct” brain. They don’t want a child who isn’t neurotypical, and so terminate pregnancies unless they get one that is. People with Down Syndrome can lead happy, fulfilling lives, yet are wiped out because those lives may not look like the lives of most others.

Instead of understanding that choosing to have a child means you can get all different kinds of children, including those with Down Syndrome or other disabilities, these pre-natal screenings allow people to determine the worth of having a child based on what society deems “normal.”

If an autism pre-natal screening test were made, it is certain that abortions for autism would rise as well. Some people say we should prevent “severe autistic people” from existing but keep the “high-functioning ones” who bring “benefit to society.” There is no clear distinction between the two. Some autistic people are highly intelligent and still need life-long support. A test wouldn’t be able to tell you how much support your child would need versus how intelligent they are, in order to weigh the pros versus cons of giving birth to them. I am what people consider “high-functioning.” If my mom had been someone who cared whether I was disabled or not, and she had looked at a pre-natal test and seen I was autistic, I would have been aborted just as easily as someone who needs life-long support. And here’s the key part — neither would be more or less wrong than the other.

If tests could show you all the details of a child’s need of support and their intelligence, people would decide who should live or die based on how “valuable” they are to the human race (as if the “useless” ones aren’t a part of that race and have just as much right to existence as anyone else). Who gets to define valuable? In this society, people are judged to not be valuable if they can’t hold down a job that benefits a business or corporation. The mentally disabled aren’t viewed as valuable because they don’t help corporations make a profit. The idea of being valuable because you are a person, or that life has a meaning beyond work, or that people have a right to live a life that fulfills them in their own way, seems to have been lost somewhere along the way. Organizations like Autism Speaks believe you are only valuable if your life looks like everyone else’s, which somehow is the only way to “contribute to society.”

Pre-natal screening would decimate the autistic population. And Autism Speaks spends 27% of its funding making this possible.

Stealing “Normal” Children

Mournful girl turned to the side.

Going back to the example of Sesame Street’s partnership, let’s take a look at another area where Autism Speaks harms the autistic community. The ads themselves are fine and preach love and acceptance, but they direct the viewer to a toolkit created by Autism Speaks. In this toolkit there is genuinely helpful information, but it is mixed in with dangerous ideology.

A section of the toolkit encourages parents to go through the five stages of grief upon finding out their child is autistic. They grieve for the “normal” child that they never had, and all the dreams that have been lost. No child has died or been “lost” to autism. Autism isn’t a disease which swipes away “normal” children and replaces them with autistic ones. When people have a child, they aren’t going to get the exact one they imagined. It is not their life, but the child’s life. There is no reason to grieve for “lost dreams.” All children have their own dreams, and have the right to pursue what they want, not what their parents want for them.

The idea that having an autistic child is like an NT child dying continues. Throughout the toolkit, quotes and testimonies are given (from parents, never autistic people). In one testimony, a mom talks about how a kid in her autistic son’s class was diagnosed with leukemia. The parents supported her through her grief and brought gifts and meals to help the family. The mom of the autistic kid complains that the parents didn’t give her the exact same amount of attention and sympathy, as if having an autistic child is so awful that her son might as well have been dying of cancer for all the grief he caused.

The words of the toolkit aren’t just harmless statements. They cause real harm. Parents are taught that it’s acceptable to wish their child was dead rather than be autistic. People genuinely fear their kids being autistic over getting deadly diseases. This is not acceptable, and children shouldn’t be living with parents who’d rather they were dying. But when the leading autism organization compares autism to death, it’s no wonder people hold this view.

In the toolkit, parents are told to not accept autism and to be angry at it. One section describes how to deal with fights with spouses. Someone might be angry at their spouse if it appears they not doing as much work to support their child. The section recommends not feeling hateful or screaming at your spouse and instead having a compassionate and understanding conversation. This is good advice, but the section continues on to say that it is really “the autism” that someone feels hateful and angry toward, and recommends they direct their negative feelings at “autism” rather than their spouse. This again implies that autism is a malevolent force distinct from the child. To be angry that your child is autistic is to be angry at who your child is. And if a parent is angry about who their child is, that child will grow up feeling ashamed and worthless when there is nothing wrong with them.

Sometimes, these children don’t even grow up. Disabled children are shot, poisoned, and suffocated under the logic that they’re too difficult to handle. When these murders happen, people treat it differently than if the child had been neurotypical. No one would justify the murder of an NT child for any reason, yet because a child is disabled people express sympathy for the parents, referring to them as “acts of love” and “desperation.” This links back to the idea put out by leading organizations that disabled people’s lives are worth less.

As the Autistic Self Advocacy Network says,

Media sources and defense attorneys have continued to portray acts of violence against people with disabilities as the natural result of the “burden” of living with a person with a disability. Rather than rallying with sympathy and support for the child victim of attempted filicide, media coverage has consistently attempted to excuse and justify her murderer and paint the person who tried to kill her–her own mother–as the “real” victim.

We do not excuse the intentional poisoning of nondisabled children as the result of the stress of parenting; disabled children deserve this same basic social protection. When someone abuses a child with a disability, the crime is not that she had the audacity to be disabled–it is that she was abused by the people she trusted and relied on most.

Autism Speaks and organizations like it spread the view that autism makes someone’s life less valuable. It’s no wonder these incidents happen, when parents are told again and again that anger and hatred toward autism is understandable and even encouraged, and that autistic children are like dead children. Rather than working to provide support and hope for these families, Autism Speaks works to spread stigma against autism. Rather than fighting for insurances to cover therapies and community living centers, to do what’s best for parents and children, they concentrate on blaming autism. Until we focus on treating all disabled people as humans deserving of rights, and put effort into laws which protect and support autistic people and their families, these murders will continue to happen.

Pseudoscience and Abuse

A fearful child looks outside through a hole in the wall.

In the Autism Speaks toolkit’s list of therapies, it recommends ABA, a therapy known for causing PTSD in autistic people and teaching them total compliance. It removes the idea of consent and conditions them to believe that they must obey what neurotypicals want them to do, whether that’s being forced to hold eye contact, say certain phrases, give hugs, or, as this can easily lead to, forced sexual activity and exploitation. Instead of addressing the child’s emotional needs, it teaches them to stop healthy coping strategies and act neurotypical. This “therapy” is fully endorsed by Autism Speaks.

The toolkit also peddles the pseudoscientific idea that a gluten or casein free diet is some kind of miraculous cure for autistic traits. Isolated studies showed improvement, but more recent studies and reviews have concluded that there is no significant impact on a child put on this diet. Yet this toolkit treats it as fact, reminiscent of when the pseudoscience group PETA put out false information about how drinking milk contributes to autism. Autism Speaks not only promotes harmful practices and viewpoints, it puts forth ideas as facts when they are merely vague hopes.

Who is Actually Speaking?

Person’s mouth is covered by shadowy hands.

It would be strange if the leading advocacy group for the LGBTQ community was made up of straight people, or if a POC advocacy group was run by white people. Yet it isn’t viewed as strange that there are only two Autism Speaks board members out of over thirty who are autistic. The rest are neurotypical, and the organization entirely caters to neurotypicals. In all its testimonies and information, we never hear from autistic people. We only see examples of autistic children, not adults, and we never get to hear autistic adults speak about autism. We don’t even get to hear the children talk about their experiences or opinions.

The information Autism Speaks gives out is written by and for neurotypicals. All its guides, toolkits and ads focus on how families and peers will feel. We are told how the parents will be sad, how siblings will be confused, how friends will be upset. We are never taught to question how the autistic person might think or feel. It’s like autistic children have no ability to communicate for themselves, and autistic adults are non-existent.

At the end of the toolkit, Autism Speaks encourages parents to seek out the “autism community,” which according to them is made up of therapists and parents of autistic children. Guess who’s not part of the autism community according to this list? Autistic people.

A more accurate name for this organization would be Neurotypicals Speak. How can an organization expect to do what’s best for a group of marginalized people if it only ever seeks opinions from those outside the group? Again, that’s like a gay rights organization that only ever talks to parents of the gay children, rather than gay adults or the children themselves. No matter how noble their intentions, they will never be able to provide proper advocacy.

What Can I do Instead?

Support These: Autism Women and Nonbinary Network, Autistic Self Advocacy Network, Boycott Autism Speaks, NeuroTribes, Neurodiversity, #WalkInRed, Autism Acceptance Month. Not this: Autism Speaks.

If you’ve supported Autism Speaks before or even donated to them, don’t feel bad. You aren’t a bad person, and this article isn’t meant to attack you. As mentioned before, Autism Speaks is a master at brand imaging, and their true intentions are hidden beneath meaningless messages about acceptance and love.

The best thing to do is not feel terrible about yourself, but to move forward and do your best to help autistic people gain true acceptance. How can you do this? One way is to support organizations which help us.

The most well-known organization for this purpose is called the Autistic Self-Advocacy Network. This organization is run by autistic people and seeks to promote equal rights and opportunities. It provides training and information to help encourage autistic people to self-advocate and gain autonomy. It supports community living centers, where people who need life-long support can live autonomous and fulfilling lives. It centers autistic voices in discussions on how best to support us and works to pass laws which protect our rights and ensure we have access to communication and therapies, all while protecting our human right to privacy autonomy. If you want to support the autistic community, this is the organization to donate to.

There are several other good organizations, including the Autistic Women and Nonbinary Network, which centers the voices of traditionally ignored members of the autistic community, and A4A Ontario, an Ontario-based organization promoting rights for the disabled. These are all good organizations to support, and the image above gives examples of other slogans, symbols, and organizations which support autistic acceptance.

Autism Speaks may control the current narrative on autism, but it doesn’t have to stay that way. Most people who support them wouldn’t do so if they knew their true intentions. You can help by spreading awareness about the harm of Autism Speaks and amplifying actual autistic voices. Share this article and any others with this information. Follow the self-advocacy organizations above and donate to them. Make sure you are listening to autistic people rather than speaking over them. Help us take back the cultural narrative around autism and control it for ourselves.

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This Publication is for all who are Autistic and for those of our kind. It is for the Neurodivergent, for those on the Spectrum of all Gender Identities, the LGBTQ*, and all others who are justifiably non-conformant to Society’s harmful marginalization and Ableist views of us.

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Juliette L. Dunn

Juliette L. Dunn

Author of queer science fantasy. Autistic advocate of neurodiversity. She/her https://julietteauthor.wixsite.com/author

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