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What Is Wrong With Autism Speaks

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The Idea That Autism Is A Childhood Disorder

Ask an Autistic #6 – What’s Wrong With Autism Speaks?

Some Autistics dislike the symbol of a colorful puzzle piece because it appears childish. The bright primary colors and image of a toy most commonly associate with children identify autism as a childhood disorder and that attention should be paid to how it affects children. But those children grow up and they still are Autistic , and not enough media attention is paid to the specific supports that are needed post-childhood.

If You Support Autism Speaks And Participate In Their Light It Up Blue Campaign I Am Not Here To Condemn Or Judge You

Before my son was diagnosed, Autism Speaks is the only autism organization I had ever heard of. I thought their blue and their puzzle pieces were universally accepted as the preferred symbols for autism.

Ive since learned that isnt the case.

It would take a long time to outline the many reasons that a lot of autistic people do not align themselves with Autism Speaks. The list of alleged issues with the organization is long. They have undergone a rebranding effort, and by some accounts, progress is being made, but they have a long history of practices that many autistic individuals do not support. As an organization, they have often painted autism as tragic, mysterious and unfortunate, and have centered the experiences of autism parents over the voices of actually autistic people, among many other things.

Im not here to tell you that you shouldnt support Autism Speaks Im here to inform you that a LOT of actually autistic people dont support them. Some go as far as to call them a hate group. You can draw your own conclusions about what that should mean for you.

Autistic People Spark Twitter Fight Against Autism Speaks

This weekend autistic people took over #AutismSpeaks10, the Twitter hashtag created by the large advocacy organization to celebrate its 10-year anniversary. “Stop treating us like we’re broken and need fixing,” one wrote.

8:23 AM – 22 Feb 15ReplyRetweetFavorite

Wednesday will mark the 10th birthday of Autism Speaks, the world’s largest autism advocacy organization. To celebrate, Autism Speaks encouraged its 168,000 and 1.5 million to use the hashtag #AutismSpeaks10 to share “how AS has touched your life.”

Instead of heartwarming stories of gratitude, the hashtag has sparked hundreds of angry missives from autistic people and their supporters who say Autism Speaks does not speak for them.

“It really came out of the autistic Twittersphere, which saw this as an opportunity to highlight the fact that Autism Speaks’ 10 years of existence have, in fact, made things worse for us, not better,” Ari Ne’eman, president of the Autistic Self Advocacy Network, told BuzzFeed News.

Its detractors claim that Autism Speaks portrays autism as a frightening disease in desperate need of a cure. Some are also angry that the organization has no autistic people in positions of senior leadership, and say that it doesn’t put enough of its ample resources toward programs that will improve their everyday lives.

Autism Speaks declined an interview request from BuzzFeed News.

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Mom Uses Junk Science To Treat Child With Autism Shares It Online

I think that given the complexity and the variability of the causes and the manifestations of autism, trying to come up with a cure is probably not the right approach, said autism researcher and psychologist Len Abbeduto, director of the University of California, Davis, MIND Institute in Sacramento.

An estimated 80 percent of autism cases involve genetic factors, and it tends to run in families, but there is no single autism gene, Abbeduto explained. In fact, research has shown that more than 100 genes, and maybe upwards of 1,000, may play a role. Researchers also suspect that environmental factors such as exposures to infectious agents, pesticides or other toxins in pregnancy may play a role.

Scientists are investing a lot of work into understanding the genes but were also realizing its a lot more complicated than anybody ever thought when they started out, psychologist Ann Wagner, national autism coordinator for the U.S. Department of Health and Human Services, said.

Its highly likely that there are different causes for different kinds of ASD.

We do know that its highly genetic, we just havent identified how particular kinds of genes might interact with each other or with other factors to cause autism spectrum disorder, Wagner said. Autism is such a heterogenous disorder, so its highly likely that there are different causes for different kinds of ASD.

Because We Love Our Boy And Want To Support All The Other Ipads Out There We Want To Acknowledge World Autism Awareness Day Without Furthering Support For Autism Speaks


There are other options!

Some people choose to follow the Red Instead movement. According to, Blue is typically understood to be a symbol of loss, grief, and despair. Not surprisingly, many autistics prefer to be associated with a color that symbolizes fire, passion, and heart. The #RedInstead movement seeks to spread a message of acceptance rather than awareness. The world knows about autism its time to start teaching the world how to accommodate, rather than seek to cure, autistic people.

Another option is to Light It Up Gold. explains, The Au suffix has become quite common in its use as it uses the Autis = Au* = Gold idea to self-identify and as a community had started #LIUG, Light it up Gold, in response to Auti$m $peak$ . This was not the only use of Gold or Au we found, but it was the most common and seemed to have struck a loud chord in many groups and individuals in other countries as well as the UK.

We love this one in our house. Every year on April 2, I post the following: Au is the chemical symbol for gold. Gold is valuable, and so is Walker! Hes AUtistic and AUsome! We dont feel BLUE about Walkers autism! We are lucky to have our PRECIOUS boy sparkling and shining just exactly as he is! We are lighting it up GOLD for Autism Acceptance Day!

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Understanding The Puzzle Of Autism Speaks

Joining charities like the American Cancer Societys Relay for Life and Susan G. Komen for the Cure, Autism Speaks has recently been afforded significant national exposure, giving it similar status as other household name titans of charity. Major League Baseball has teamed up with the group, over two hundred college and university groups have helped to raise awareness, and major cable news channels have participated in Autism Awareness month. The Autism Speaks brand has certainly been on the rise.

Following that trajectory, last week was certainly a busy week for the organization they teamed up with Sesame Street, partnered with on a major Genome Project, and their college surrogates have sung their praises in the public square, all while mourning the electoral loss of their friend, majority leader Eric Cantor .

However, as the week concluded, the Daily Beast asked Autism Speaks But Should Everyone Listen?, reigniting the debate surrounding the organizations controversial past. The article has been picked up by watchdog groups and has reinvigorated Twitter hashtag #BoycottAutismSpeaks.

To summarize, the article provides a comprehensive, descriptive history of the organizations questionable background:

2) Autism Speaks pays its high level officials quite well, with at least thirteen individuals taking in well into six figures. For example, the Daily Beast article explains that Chief Science Officer Geri Dawson took in $465,671 in 2012.

Autism Speaks: Whos Speaking

I am a pain in the ass to shop for. When I was a kid, I had some very unrealistic rules about the way my clothes fit: no tags, no stitching, no dry-fit, no velvet, no microfiber, and nothing clinging to my skin. My mom would find clothes that fit these requirements, but I couldnt get past trying them on because the sales tag was still attached. We had to get creative, so we started buying clothes with tags and cutting them out. If there was a stitched pattern, it had to have fabric on the inside of the shirt or dress so the stitches wouldnt rub against my stomach or chest. For years, I would only wear leggings because I hated how denim felt on my legs.

Thats one of the many reasons it came as no surprise when the papers came in the mail two weeks after testing with a diagnosis: Autism Spectrum Disorder. It was a catch-all the one explanation I needed for my hyperlexia, hypersensitivity, advanced critical thinking, abnormal social interactions, and so many other things I cant even name off the top of my head. Most of them good.

The puzzle piece was originally used by the United Kingdoms National Autistic Society, depicting a distraught child. The symbolism was supposed to represent the burden autistic people are on themselves and others, and I dont believe I need to explain why thats a problem. However, Autism Speaks continues to use the puzzle piece , knowing its toxic origins.

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This Is Important To Me Because Of My Son Walker

Walker is five and hes had an ASD diagnosis since just before he was three. But hes been autistic since he was a flickering heartbeat on a grainy eight-week ultrasoundthe moment I fell in love with him.

When he was diagnosed, the developmental pediatrician that guided us through that process warned us about Autism Speaks. He said that their focus on a cure makes autism seem like a terrifying disease instead of a neurological difference. He suggested other places where we could seek out information about autism, and encouraged us to think about our child as different so we could accommodate him differently, but never, ever to think of him as damaged, broken or in need of fixing.

I am so grateful for that. Because of him, I chose instead to seek out autistic adults and listen to their advice. Our son has been free to be himself. We have chosen to limit his therapies to things that support interests he already has, like speech. We have understood from minute one that appearing neurotypical is not a goal he has, so its not a goal we will set for him.

My oldest son explains it to people like this: Our family is mostly made of computers, but Walker is an iPad. We are all really smart, and we can still communicate with each other even though we do different stuff. We are way different, but also way the same.

The Autism Speaks Controversy

What Goes Wrong in the Brain of a Child with Autism Spectrum Disorder ?

by Bryanne McDonough | published Dec. 5th, 2014

“Autism Speaks is a hate group.” These accusing words were added to a poster put up by the Alpha Xi Delta sorority, which advertised the annual Walk Now for Autism Speaks fundraiser. Autism Speaks is the sororitys national philanthropy. RITs Alpha Xi Delta chapter volunteered at the event, which is supposed to increase awareness and raise funds for the organization. They put up posters advertising the event across campus however, a few of them were vandalized with the attempt to discourage people from supporting the organization.

Families from the Rochester community came out to support the event, which occurred on Oct. 11 at Monroe Community College, according to Shannon Frassrand, a fourth year New Media Marketing major and the vice president of public relations for Alpha Xi Deltas RIT chapter.

Weve had problems in the past with people vandalizing, not necessarily liking Autism Speaks, she said when asked about the vandalism. Frassrand admitted that the organization was controversial and stressed that they were just trying to raise support for their chosen organization.

They are extremely detrimental to autistic people and to all of the things that we are attempting to accomplish.

The Autism Speaks foundation has been the subject of scrutiny over the past years for allegedly not respecting, and even vilifying, the group of people they claim to represent. None of the senior members of the organization are autistic.

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Autism Speaks Seeks A Cure For Autism

Autism Speaks declares in its mission statement that it seeks to find a cure for autism. Attempting to cure autism is problematic. At first, it might seem appropriate to find a cure for a disorder that can cause significant social, communication and behavioral challenges,” but this perspective is ultimately rooted in ableism and does not embrace the entirety of the experience of autism. Suggesting that a community should be entirely ameliorated does not recognize the truly diverse social, communicative and behavioral circumstances within the community. Moreover, it suggests that the experience of autism is, inherently, a bad one, and people with autism are second-class citizens. That is not the reality. Since Autism Speaks’ conception, prenatal testing has been developed for Down syndrome and has caused a decreasing rate of Down syndrome births, despite many families reflecting positively on the experience of raising a child with Down syndrome, proving that this research has the potential to have a dramatic negative impact on the autistic community. Ignoring the cries from the community to remove this from their mission statement, on top of the research surrounding Down syndrome, proves that Autism Speaks is, at worst, apathetic to the possibility of eliminating the community and at best, out of touch with the community’s desires.

I Resign My Roles At Autism Speaks

building neurodiversity on campushigh school to work transition programsnowtwo years agoJohn Elder Robison is an autistic adult and advocate for people with neurological differences. He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He’s co-founder of the TCS Auto Program and hes the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia. The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay may give you food for thought, actually printing and eating it may make you sick.

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Why Autism Speaks Doesn’t Speak For Me

Cover via Amazon

Autism Speaks, founded in 2005 by Bob and Suzanne Wright, sometimes seems to have taken over the entire conversation about autism in this country, what with their blue puzzle pieces littered all over the landscape, coming to symbolize, wrongly, autism itself. Yet in spite of their ostensible role as a voice for autism, they’ve got a poor track record of showing respect for autistic people. One example is their intensely offensive “I am autism” video from 2009, promising a threatening, ominous autism that “knows where you live” and “works faster than pediatric AIDS, cancer, and diabetes combined.” Oh, and guaranteeing also that autism will make your marriage fail. It doesn’t.

But that little fact and any number of others didn’t get in the way of Suzanne Wright when she settled in to pen her organization’s recent “” on autism, this time switching pronouns to assert repeatedly in boldface, “This is autism.” She claims that the country has failed autism families, “let them split up.” According to Ms. Wright, families who have autistic children are “not living.” Except that, almost in the same breath, evidently we are living

… moment-to-moment. In anticipation of the childs next move. In despair. In fear of the future.

Autism “moms” , she avers, live like this:

How To Choose An Autism Charity


If you have a child, family member, or friend with autism spectrum disorder , you may want to donate to a charity that supports autism research or people living with autism. There are many to choose from, so start by considering details such as how you want your donation spent and then learning as much as you can about the organizations youre most interested in.

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Autism Speaks Is Basically A Hate Group

  • Kirsten Aucoin

Autism Speaks has gained a fair amount of exposure and popularity as an organization. I’ve seen their logo used in countless ways, and have known people who participated in their walks. However, it is a group that Iand many othershave refused to support due to their history of demonizing people with autism, ignoring their voices, supporting abusive groups, misreading false information and even potentially promoting eugenics. There’s good reason for people not to support their organization. There’s good reason for some to even call it a hate group.

Autism Speaks doesn’t actually focus on helping autistic people, though. In 2010, only four percent of their budget went towards providing services for autistic individuals . For many years, there were no people with autism even in the group’s leadership . The group also supported the false idea of vaccines causing autism up until recent years, with a senior executive resigning from the group in 2009 due to his disagreement with the group’s continued funding of research in that area .

Autism Speaks is focused on the ideal of a neurotypical world. It’s focused on sympathy and victimization for parents of autistic children, at the expense of the children. It’s built upon ableism and it’s unacceptable.

The Money Doesnt 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 doesnt 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, its easy to find out what the real intentions of this research are.

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