Who Is Actually Speaking
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 isnt 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 dont 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. Its 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 whos not part of the autism community according to this list? Autistic people.
Big Brain Energy: The Problem With Autism Speaks
Scores of Autistic people vehemently denounce the organization, you should know why
When neurotypical people think of Autism Spectrum Disorder , they often think of organizations such as Autism Speaks, which is one of the most internationally recognized autism groups. However, as an organization, Autism Speaks remains one of the most hotly debated aspects of the autistic community, given the questionable actions of those who run the foundation and what it fundamentally stands for.
In 2009, Autism Speaks released a three-minute which depicted Autism Spectrum Disorder as a stalker that knows where you live and is constantly watching you. Perhaps even more concerning: The advertisement suggested ASD is far worse than cancer and AIDS and is guaranteed to make your marriage crumble. Dont believe me? Read an excerpt from the transcript below.
I work faster than pediatric AIDS, cancer and diabetes combined. And if youre 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, the excerpt reads. I dont sleep, so I make sure you dont 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.
- TAGS
Sleeping On Your Belly
Do you like to sleep on your tummy, but experience problems oftentimes? The position might not help you. If you experience insomnia, chances are that youre not comfortable sleeping in this position. It can tense your neck and your lower back. But if this is how you like to sleep, you might consider using a very soft cooling pillow to keep your neck comfortable.
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Why Is Autism Speaks Bad
Autism is basically a disorder which includes the range of conditions characterized by difficulty in speech and social skills, repetitive behavior and pattern. There are many organizations and institutions which are doing research on Autism, its awareness, cure, and how to deal with it.
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One of these organizations is Autism Speaks. It is founded in 2005. It is basically an autism advocacy organization which does research on autism and conducts awareness programs and activities aimed at families, government, and the public.
But recently some issues rose against the organization related to carelessness towards autism affected individuals. Find out some reasons for Why is Autism Speaks badly?
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Autism Speaks Does Not Allocate Its Funds To Directly Help People With Autism
In Autism Speaksâ most recent budget report for the 2014 fiscal year, it spent 15.7 million dollars of the 57.5 million dollar total on family grants, which directly aide families and people with autism. They also spent 23 million dollars on employee compensation with many of their board members earning six figures. Moreover, most of Autism Speaks budget goes toward research rather than to direct care. Autism Speaks has a history of not allocating its funds to appropriate research. In fact, its symbol, the puzzle piece, was created as a symbol of its purpose to find the missing pieces of genetic material to establish a connection with autism and genes. This sort of research is problematic because it is part of seeking a cure for autism and can be interpreted as an attempt at eugenics.
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Stealing An Autistic Persons Work
In what might be the most egregious example of disregard for the rights of autistic people, Autism Speaks used an out of context quote by an autistic woman who protested against them, without any permission and without proper attribution. When she called them out, they lied, took it down, and then put it right back up as if they had done nothing wrong. The misattributed, context-free, misapplied quote appeared on the Autism Speaks website off and on through at least January 2014. You can read the full account here.
The Autism Speaks Controversy
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 Doesnt Speak For Everyone With Autism
- NICK HUGHES | Special to LNP
Autism spectrum disorder is a developmental disability that affects about 1 in 59 U.S. children, according to the Centers for Disease Control and Prevention.
Autism Speaks is an international charity organization that works to promote awareness about autism. After looking at the finances and graphs that Autism Speaks has published, I have an issue. An issue with a lot of charities I have noticed. Why is so little of the money raised by charities actually used for charity work?
According to Charity Navigator, a watchdog website, Autism Speaks spends only 74.6% of its funds on programs and services 5.7% on administrative services and 19.6% to raise money. It gets only three out of four stars from Charity Navigator and an 80% overall score.
Autism acceptance should be about autistic people. Thats doesnt seem to be the focus of Autism Speaks.
According to the Autistic Self Advocacy Network, Autism Speaks uses its platform and advertising budget to portray autism and autistic people as mysterious and frightening. Their fundraising tactics increase stigma and create barriers to the inclusion of autistic people in our communities.
As a person with autism, I think I should be allowed to have an opinion about what is good for autistic people. There are a lot of people saying what is good for me and there is no backing or proof for their claims. Autism Speaks does not understand my autism, and I doubt the organization ever will.
A Problem That Needs To Be Solved
This symbol also suggests that, like a puzzle, autism can be viewed as a problem that needs to be solved. This perpetuates the idea that there is something wrong with Autistic identity. Many Autistics like to make distinctions between speaking negatively about autism itself and speaking negatively about specific symptoms . Its frustrating and discouraging to live your life as if the world thinks there is something wrong with you .
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Dont Expect To Meet Every Goal On Time
Understanding that your life is a bit unpredictable and stressful can help you set goals. This doesnt mean that youre limiting yourself or setting the bar so low that you wont see results, but you should ultimately be able to customize your goals to fit your life.
Setting goals is important, but you also have to take everything else into account, says Reece Kresser , Co-Founder of Zizi. Give yourself a bit of leeway when it comes to reaching the goals youve set. If your overall goal is improved health and fitness, stressing over reaching goals that might not happen because of other uncontrollable events that popped up isnt going to help you achieve that goal.
Sketchy Associations And Practices
Autism Speaks also has a long history of questionable practices and associations. According to the Autism Self-Advocacy Network, less than 5% of the organizations budget goes to programs to help families, with roughly 20% spent on fundraising and over 40% dedicated to lobbying and awareness. For most of its history, the organization has been deeply ensconced with the anti-vaccination movement and other adherents of dangerous fringe theories. However, to its credit, the organizations website now specifically denies any link between vaccines and autism.
Autism Speaks has also promoted the Judge Rotenberg Center, which is the only institution that still legally uses electric shocks on its disabled residents. In January 2019, the FDA announced plans to ban that practice by the end of the year.
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The Problem With The Autism Puzzle Piece
Image from asipages.com in an article explaining what the puzzle piece means.
For years, Autistic people have been condemning the use of the colorful jigsaw puzzle piece that stands as an international symbol for autism awareness. But their voices havent been able to overpower the media push to use the symbol. Its everywhere: on clothing, keychains, coffee mugs, license plates, organization logos and promotional materials. Many families use the logo to advertise autism awareness, their personal connection to autism, or their commitment to finding a cure. The symbol was designed to represent the complexity of autism and how little is known about it. On the surface, it seems like a memorable and harmless advocacy symbol. But I dont buy anything with a puzzle piece on it because of how many Autistics have condemned the use of this symbol. Certainly not ALL Autistics condemn the puzzle piece however, its important for neurotypicals to note that its not that some Autistic people dont like itits that they are deeply offended by it, and many NTs are unaware. As NTs, it is less important with how we interpret the puzzle piece, and critically important how the Autistic people in our lives perceive it.
The symbol of a bright, colorful, puzzle piece signifies:
Reimagined Autism Speaks Canada In Action
To reflect our commitment to diversity and inclusion, our iconic blue puzzle piece has been redesigned to include a spectrum of colors. The new more colorful logo signifies the diversity of perspectives and experiences with autism spectrum disorder and highlights our deepened commitment to inclusivity. Each element of the redesign is created to reflect not only our evolution as a charitable organization, but our vision for the future.
And while our mission remains the same, we invite you to re-download and get reacquainted with our work through some of our most commonly-accessed materials in our press room section.
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There Is Not One Member Of Their Board With Autism
Autism Speaks is one of few disability charities that refuses to include individuals with disabilities on their board or in leadership positions.
They are trying to make decisions regarding the future of autism without consulting any individuals with autism.
In fact, after being criticized so heavily for this, Autism Speaks added John Elder Robinson, an author and autism advocate who has autism, to the board.
He later resigned because the organization had no respect for individuals with autism and he could no longer align himself with their beliefs. You can read more about that here.
For those who say that its simply that there arent autistic people interested and qualified, the Autistic Self Advocacy Networks board includes several autistic self-advocates.
*Update: Autism Speaks has responded to this criticism and has added autistic members to their board. While its a teeny, tiny, baby step in the right direction, it doesnt rectify the damage this organization is done.
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.
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Reasons For Why Is Autism Speaks Badly
Because it doesnt help autistic children and adults as they promised. Autism Speaks is one of the largest autism organization, yet they are not focusing on autism affected people and their families. Only 4-5% of their funds actually helps people with autism. And as we compare, 22% of their funds are spent on fundraising efforts.
The organizations ultimate goal is End Autism
The ultimate goal of Autism Speaks is End Autism. The majority of their budget goes towards autism research. And this research is not for improving the therapies and equipment to help people affected by autism but to research for a cure for autism.
They are also trying to find a prenatal test for autism so that any mother shall no longer have autistic babies. No mother wants that their child hadnt been born because of his autism.
Not a single member of the organization is autism effected
Autism Speaks is one of the few organization which refuses to include disabled individuals on their board and in leadership positions. Without involving any individual with autism, they are trying to make decisions on the future of autism.
After criticization, they added John Elder Robinson, a person with autism. But later he resigned saying that the organization has no respect for an individual with autism.
UPDATE: After so much criticization, the organization has added autistic members to their board. This is a small step in the right direction but this cannot fix the damage this organization has done.
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 were broken and need fixing, one wrote.
Wednesday will mark the 10th birthday of Autism Speaks, the worlds 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 Neeman, 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 doesnt 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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