Autistic people, parents and advocates speak about Autism Speaks

Autism Speaks – lighting it up blue and walking away with the green

by Debra Muzikar

“I was at an event in Canada,” Keri Bowers says. “Autism Speaks had a big fundraiser that day. I was at a dinner with the Director of another nonprofit which served autistic people. The woman was complaining about donations diminishing for her nonprofit after the Autism Speaks Walk came to their city. An elderly lady sitting across the table, said ‘Do you mean the money doesn’t stay in the community? I thought when I was walking I was helping local autism families.'”

Probably the two most common misconceptions about Autism Speaks are people who walk are walking for autism supports in their own community and autistic people benefit from the majority of money raised. In writing this article, I talked to many people about Autism Speaks. I also put out a Facebook request and received lots of responses. Some people who talked to me wished to remain anonymous. Others didn’t want to participate in the discussion because they called it “political.” One thing is clear, some are afraid of Autism Speaks and their power. One parent called them the new bully on the block.

“I walk for Autism Speaks,” a mom tells me over the phone, “but I dislike the organization. The CEO called me and asked for a painting as a donation. I told them my son is a struggling artist – why don’t you buy it from him? Aren’t you supposed to be helping people on the autism spectrum? He painted another painting to benefit a local autism agency and it was his idea to give it away,” she continues.

Autism Speaks is celebrating their 10-year annniversary

Autism Speaks is the largest autism nonprofit in the world. It was started in 2005 by the former NBC Executive Bob Wright and his wife Suzanne. Their grandchild Christian is described as being non-verbal and having “severe autism”. Katie Wright, the Wright’s daughter, says her parents could have had a nice retirement but instead decided to bring awareness to autism. Autism Speaks now has an international presence which includes lobbying activities, advertising, and awareness events.

For this blog, I reviewed the Autism Speaks 2013 Financial statements and their 2013 990 IRS form. Charitynavigator.com rates Autism Speaks a low 3 and a 2 for their financials (on a scale of 1 – 4).

In 2013 Autism Speaks spent $120 million as follows:

In addition to the above, Autism Speaks spends about a million a year in lobbying activities for autism insurance reform and raising federal funding for genetic and biomedical research and services for autistic people.

Autism Speaks receives much criticism about how they spend their money

Steve Silberman, author of Neurotribes: The Legacy of Autism and the Future of Neurodiversity writes, “They suck up money out of local communities and spend it on big-ticket fishing expeditions for ‘risk factors,’ their executives make exorbitant salaries and they spend so little on services for autistic people and their families, based on their original model, which was to search for a cure for an imaginary epidemic.”

In 2013, Autism Speaks CEO’s salary was $371,000. The organization spent about as much on entertainment, travel, and catering as they did on grants for family services.

Autism Speaks spent over $52 million on advertising. It was their largest expenditure.

“Does Autism need advertising or does Autism Speaks need more money?” Michelle Beers-Welch asks.

Problems with The Autism Speaks Board

The Autism Speaks board is comprised of big corporate executives from companies such as Goldman Sachs, Samsung, Fox Sports, BNY Mellon, Starwood Capital and Sirius Radio. It appears they’ve cherry-picked people who are experts at branding, fundraising, advertising, and getting a questionable media message across. It is notable they have no representation from Autistic people on their board. John Elder Robison, a person on the spectrum, left his advisory board position in 2013, with a scathing letter about A.S. policies.

For the money to stay in the local community where the walk or fundraising event takes place it appears you have to be an AS Board member and have connections to an autism entity in the community. Here are the exceptions:

“The Atlanta Walk had net proceeds of $542,000, 50% of which was granted to
The Marcus Institute, the co-founder of which is an AS Board member. The Westchester/Fairfield Walk had net proceeds of $968,000, 15% of which was
granted to the Center for Autism and the Developing Brain at New York Presbyterian. An AS Board member is on the Board of Trustees of NY Presbyterian Hospital. The Winter Ball for Autism had net proceeds of $2,682,000 in 2013, 50% of which was granted to the New York Collaborates for Autism, the co-founder of which is an AS Board member.” (source: Autism Speaks 2013 financial statements)

Not to imply all board members of Autism Speaks are self-serving. Brian Kelly, a dad on the board, has created a scholarship fund through Autism Speaks for autistic people who want to attend college.

The way to get donations is to elicit emotions of pity

I’m certain at board meetings, AS board members discuss what media messages will raise the most money. I’ve had similar conversations with lobbyists in California. The way to get funding is to portray autistic people as suffering and their parents as people to be pitied. If the primary goal is to make money, that strategy is effective. The downside is the harm done to the psyches of autistic people and their families.

“They exploit and use Autism as a means to garner sympathy and donations from family and friends . . . I feel for the kids whom are internalizing all of A$ and their parent’s ableism and deep rooted hatred of Autism…Those of us with little try to give so much. When they with so much give little. Things need to change. Autistic people know how to help Autistic people,” Kelly Green writes.

Ableism is a form of social discrimination against people who are differing because of physical, mental or psychological status.

“They have a history of very negative messaging about autism, from the infamous ‘I Am Autism’ video, to pushing the notion of an ‘autism epidemic,’ to founder Suzanne Wright’s many offensive statements about her grandson being ‘stolen away’ by autism,” Steve Silberman.

The chilling “I am Autism” video uses a satanic voice which talks for autism.

Autism Speaks messages almost always create a backlash. In response to “I am Autism” a slew of videos were posted including the farcical “I am Autism Speaks,” which uses a similar satanic voice and talks about AS searching out and destroying families and leaving with all their money.

What does negative media messaging do to the psyches of autistic people?

“A.S. spreads a horrible view of autism. My entire family is autistic. We’re not an epidemic. Supports are what’s needed. Not scaring people,” Liz Todd.

“Instead of focusing on eradicating autism, focus on helping those who live with it have better, more fulfilled lives. Provide support for autistics of all abilities and ages,” Maranda Russell

“I cannot support an organization that claims to speak for me, when I have a voice of my own that is capable of speaking for itself. I cannot at all support a group of people who shut away the voices of advocates and their own children to champion a vapour cause,” Andy Dreiswerd

“We are human not animals that live in cages! Socialization is the number one way to open the doors to ones future, independence, activities to meet a individuals needs etc. Autism isn’t a disease it is what makes for a Extra Special Person,” Cathryn Maciel

“I am sick sick sick of Autism Speaks portraying people like me as LESS. I may be quiet on the outside but I have genius on the inside. Autistic people have internal gifts and abilities that need to be pulled out and encouraged,” Debbie Denenburg

“I’m not a burden to cure … most of it [the money for research] goes into finding a cause, prevention, and a ‘cure’. Prevention at this point is a prenatal test, similar to what is used to test for Down’s syndrome. Eugenics is eugenics,” Tina Richardson

“I have no way to make my feelings known about the awful negative myths and fear- mongering, advertising campaigns about autistic people they use to gain dollars for their main goal, short-sighted eugenics goals, whilst silencing protest with a few small strategically timed handouts,” Stephy Tihanyi

“Our pieces are not missing and we are not puzzles. There is lots of information on autism and plenty of adults talking typing singing painting dancing and communicating— we can speak —we are speaking but they do not listen. If they listened they would stop the eugenics in their agenda, advocating therapy enough autistics state is torture to warrant discussion about if it is at all ethical – they use fear, and play on stigma that needs to stop,” April Dawn Griffin

Is finding a cure important?

Autism is not a disease. It is a developmental disability determined by observation of behaviors. Can it be cured or should it be cured?

“Finding a cure is greatly needed for those on the severe end of the spectrum, and AS gives tons of money toward research in finding cause, treatments and yes… finding a cure. The comments you get are going to be from the person’s point of view from their degree of autism. If you want to do an in-depth view – please ask those who are raising a severe child/adult…High functioning autistics wear it like a badge of honor – great – good for them, have pride in who you are, but those on the severe side that have to wear head gear to prevent skull fractures from banging their head, unable to communicate, can’t function independently and are living a life day to day trapped in a body they can’t control is NOT the same.” Liz Becker, parent.

“Research should purely be driven by what will make Autistic people comfortable. Not what makes the parent comfortable. We are not going to research away the DNA they were born with. Researching the experiences ofAutistic people will finally be the saving grace for our Autistic loved ones and their culture,” Kelly Green, parent.

Despite negative messaging Autism Speaks raises autism awareness

Autism Speaks spends the majority of the money they raise in advertising. Their concerts and events draw big crowds. They are a magnet for Hollywood celebrities and rock stars. Autismspeaks.org is the #1 ranked website for autism. The Light It Up Blue campaign is world-wide. Blue puzzle adorn bumpers and grocery store walls.

Kathleen Tehrani, founder of Autism Brainstorm, “On one hand, I know that AS is the ONLY presence for awareness in many foreign countries. That’s a huge plus in my opinion. In countries where children are literally locked away in secret rooms or kept in outdoor sheds, awareness is desperately needed. No other organization is addressing this. On the other hand, I agree 150% with the words of Amethyst in the following video blog:”

“They have brought a lot of world-wide awareness. Many of their articles and programs have helped a lot of people. I post a lot of their items on my FB page and in my newsletter. They are widely read,” Valerie Saraf, a parent and editor of the autism newsletter Valeries List.

“A.S. has helped spread the awareness for us in regards to finding artistic talent for our 2015 calendar. They’ve written a couple articles on Grant about his autism and how his ‘quirky’ behavior turned into a business So far it has been a good experience for us,” Julie Coy, parent.

Stefanie Sacks, an autistic person who participated in an AS educational video about visiting the dentist writes, “I think they are trying to do better. … I don’t like their videos they post that act like autism is a nightmare for new parents. Until we have another org that is just as big as them it’s better than nothing. I’m in my forties. I’ve been living this life a long time – way before anything was accepted … I’m just happy there’s more awareness out there … I wish there was less fighting in our community. I think also new parents can learn from us …”

“I do not like the way they describe us and feel that it preys on the vulnerabilities of parents in their early days of coping before understanding and acceptance occurs. I also see them helping developing countries where autistic children are very limited in their supports and potential outcomes. Autism Speaks must evolve and balance the negative marketing to fundraise against the very real damage they inflict on the self-identity of autistic people,” Monique Blakemore, autistic, married to an autistic and parent of autistic children from the U.K.

Autism Speaks funding helps some families

About four percent of Autism Speaks funding goes to Family Service grants.

“I understand that a lot of people do not like Autism Speaks, but they were truly a Godsend, for our family. They provided funding for our son’s initial diagnosis, six years ago. Since then, they’ve provided ongoing developmental pediatrician visits, for our son and many other children, at no cost, through the Autism Treatment Network they fund at Vanderbilt Children’s Hospital, in Nashville, TN. At no point have we felt belittled or betrayed. They have offered us unconditional support. Autism Speaks finances this program at 13 other facilities where the same services are provided. We are truly thankful, for the services they made available for us, when we had nowhere else to go,” Jennifer Gray

Do they do more harm than good?

“They do so much harm and the 4% of good things they do is totally overshadowed by the 96% of things they do that make our lives so much worse,” Lei Wiley-Mdske.

Lack of response a problem for some families

Earlier this week I wrote a blog about my problems with their resource directory and response team. Others expressed similar frustration.

“I asked them for help because I am losing my home with 2 spectrum kids they never even replied back to my application,” Angela McDonough.

More help is needed for autistic adults

500,000 autistic children will become adults in the next decade. Many adults on the autism spectrum think more money should go to helping adults.

“With autistic organizations overall it really makes me mad how almost all of them exclusively help kids with autism and their families. Don’t get me wrong, I’m sure those people deserve help…but when someone with autism reaches adulthood and especially if they are high-functioning and expected to be independent THAT is when we often need the most help! As a child you have others to take care of you as an adult with autism you are often all on your own and the only help you can get is from family or friends who are able or willing to help,” Maranda Russell

Moving from awareness to acceptance

Gee Vero, from Germany writes: “In Germany lots of autistic people and parents of autistics think Autism Speaks is the answer to all their prayers. Lighting up buildings blue for one day seems the in thing but does it really change societies view about autism? does it really educate about autism?…I believe in personal encounters, I believe in talking and explaining my autism to others, I believe in finding things we all have in common rather than looking for differences. I do that all year round not just on one day… awareness is great but acceptance is the goal.”

How do we educate people about autism and Autism Speaks?

“It makes me uncomfortable how some autistic people won’t engage or strongly criticise parents involved with Autism Speaks. It cuts those parents off from new information, our autistic perspective. And parents need that information,” Monique Blakemore

“…Most of the people who participate in Autism Speaks walks are *not the enemy.* The fact that they are motivated at all to work on autism-related issues means that they are already ahead of the general public. They just need to be gently educated about the problems with Autism Speaks and guided toward raising money for better organizations, like the Autism Self-Advocacy Network, AANE, and local groups,” Steve Silberman

“I think the best thing we can do for others is to bring attention to the issues with Autism Speaks and provide a rational concrete explanation for why they are not the best choice. It is easy to approach people with a confrontational and angry outburst or an emotional tirade about the organization, but that isn’t what will actually open most people’s eyes. It is the facts,” Maranda Russell

“I stand for a future vision for AS… For now, their message is not a voice for most people with autism – yet they are a powerful presence in autism. Still, they do not speak for me. I am a stand for a future possibility, and will be there when they get ‘what now,'” Keri Bowers

Many organizations boycott Autism Speaks and their sponsors

There are many disability-related organizations who boycott Autism Speaks including TASH, The National Council on Independent Living, The Thinking Person’s Guide to Autism, The Autism Women’s Network, and The Autistic Self Advocacy Network. Boycott Autism Speaks encourages people to boycott sponsors of Autism Speaks as well.

Hashtag wars

On Twitter, Autism Speak’s recent #MSSNG hashtag as a platform for genome research was responded with by #NOTMSSNG and #ActuallyAutistic hashtags by autism advocates. #LIUB alternate is #Walkinred; #AutismSpeaks -#BoycottAutismSpeaks.

Currently Toys R Us is a target of boycott with the hashtag #Toys4All. A twitter chat between Autism Speaks and Toys R Us about toys for “differently-abled” children raised ire among disability advocates.

“Like we can’t all play with the same toys?” Lei Wiley-Mdske.

Give to local charities

A high-profile mom who wishes to remain anonymous because of a possible backlash in the community writes, “In the last decade since the most prominent and very Madison Avenue-driven Autism Speaks came on the scene and ruling the roost of all things autism awareness and such, it’s often assumed I’m pro-blue, pro AS. No and I’ve never been, though I’ve tried not to talk too much about it. There are many, many reasons us more mainstream stratta in the community who embrace our sons and daughter’s autism vehemently dislike much about this organization. Want to give where it counts? Start local.”

“I’ve never seen so many of the people an organization claims to support speak out against it as much as this one. When I found out how many autistic people were against it, I stopped supporting it and turned my attention to local organizations like Autism Tree Project Foundation that I can personally see making a difference in people’s lives,” Alex Tescher.

“I support ASAN, GRASP, and the Golden Hat Foundation because for one they have a more loving tone in their advertisements. ASAN and GRASP have founders and board directors who are on the spectrum,” Morgan Hinton.

The Golden Hat Foundation, honoring the intellectual capabilities of those with autism, was started by actress Kate Winslett.

Editor’s Note: (5/7/2016) The Art of Autism received its nonprofit status this year. We would really appreciate donations as our board is totally volunteer and we self-fund all our projects.  We have zero overhead as we have no employees and no office.

Is supporting Autism Speaks disrespectful to Autistic people?

“When I see partners and others honoring them [AS] and promoting them I wonder just how they can compartmentalize all of that? How can they say they are all about helping Autistic adults and children yet turn away all of our complaints as meaningless?” Kelly Green

A Future Art Exhibit?

Stephanie Tihanyi is working on a piece of art to express her frustration with Autism Speaks. She suggested an art exhibit. The Art of Autism recently declined to participate in an event in Los Angeles where a person from Autism Speaks was being honored. I look forward to curating an exhibit that represents autistic voices. If you have a piece of art you’d like to share, please email me at theartofautism @ gmail.com.

Postscript: The day after I wrote this piece, Bob Wright announced he was stepping down as Chairman of the Board. “We will partner with community organizations, businesses, educators, and researchers across the country to foster innovation that will improve the lives and futures of people across the autism spectrum,” Brian Kelly, new chairman of the board. Oops! Brian Kelly didn’t mention partnering with the autistic community. An oversight or intentional? Maybe Brian Kelly would like to respond to this blog. I asked the President of Autism Speaks to respond, but received no reply.

5/7/16 Since writing this blog Autism Speaks has appointed two autistic people to its board. I interviewed board member Dr. Stephen Shore about his role on the Autism Speak’s board a few months ago.

Top Art work – “Hush” April Dawn Griffin