Be(a)ware

Michelle Sutton writes about Autism Speaks and Autism Awareness Australia:

“Neither of these organisations is really intent on helping Autistic people. They are interested in supporting lives “touched by autism”, but that’s not the same thing. When they talk about “lives touched by autism” they mean the families of Autistic people, who feel their lives have been adversely affected by the existence of an Autistic person.”

Read the full article: Be(a)ware

#REDinstead

Is your school, workplace, or local business participating in Light It Up Blue this Saturday? Spread the word. Share the love. Wear #REDinstead.

Attached is an example flyer; feel free to modify to suit your needs and distribute in your community:

redinsteadflyerimage.JPG

(to print: REDinstead)

Additionally, you may want to consider directing people to the ASAN “Boycott Autism Speaks” petition. It is two years old, but most of the information contained in the letter remains accurate.

 

Edited to add: ASAN has updated their official A$ flyer for this year! Check it out here.

 

Boycott Autism Speaks

“To the Sponsors, Donors, and Supporters of Autism Speaks:

We, the undersigned organizations representing the disability community, are writing to urge you to end your support for Autism Speaks. We profoundly appreciate your interest in supporting the autism and broader disability communities. Our work is about empowering and supporting people with all disabilities, including adults and children on the autism spectrum, to be recognized as equal citizens in our society and afforded all of the rights and opportunities that implies. Unfortunately, Autism Speaks’ statements and actions do damage to that work and to the lives of autistic people and those with other disabilities. It is our hope that we may work together in a spirit of partnership to find new and less controversial ways for you to show your commitment to our community.”

Please read the rest of the letter from the Autistic Self Advocacy Network: Why Boycott

Why I Won’t “Light it Up Blue”

(Previous posts: History of Autism Speaks and Autism Speaks: Cost and Expense Report)

Light It Up Blue is a campaign created by Autism Speaks for World Autism Awareness Day (April 2). They chose the color blue to represent the fact that more boys than girls are diagnosed with autism. Autism Speaks profits from the sale of blue light bulbs as well as their own clothing and merchandise centered on this theme. Additionally, any event using the LIUB logo must provide a minimum of 20% net proceeds to Autism Speaks.

It is no secret that I do not support Autism Speaks. However, for a long time I was on the fence about the issue of wearing blue. The kids that I worked with – and even many of their parents – did not associate the Light It Up Blue movement with its founding organization. They just knew that everyone would be wearing blue “for autism.” If I showed up to work without a blue t-shirt, would that child think I didn’t care about him?

Ignorance is not an excuse for indolence. It was time to do the work of educating the people around me to the fact that blue does not stand for acceptance. Meanwhile, the deeper I looked the more strongly I was convinced that one cannot neutrally participate in Light It Up Blue in any form.

 “Lately I have seen some parents suggesting that their ‘Lighting it up Blue’ is different – because they have their own kind of family meaning or tradition for it and do not associate it at all with Autism Speaks. … What if instead of insisting their right to their opinion – they leaned into the discomfort of perhaps being wrong. It would be interesting to see what would happen if they tried to understand the impact of negative rhetoric and how this is embodied in blue lights and puzzles as a metaphor for this hateful cure mentality.” (L. Kelley)

There was a sea of voices – such as Emma, Rose, and Linda – telling me that the decision to wear blue on April 2 would remind autistic people that the world sees them as a burden, would mark me as someone who could not be trusted, would actively hurt the autistic community. And then there was no doubt.

“Autistic people have spoken. If you’re interested in being an ally to Autistic people, withdraw all support for Autism $peaks. Don’t promote them in any way. Don’t defend them. Don’t try to silence their critics. Turn off your blue lights until May.” (Nick Walker)

So I refused to wear blue. And do you know what happened? People asked me why. Conversations ensued. Progress began. And not a single one of my autistic students felt any less loved.

This year, I invite you to join me in ditching your blues and wear red instead. #REDinstead (originally called “Walk in Red”) is a countermovement created by autistic people to “encourage inclusion and foster understanding rather than sound alarms or stigmatize minds.” Red stands for love, acceptance, support – because we don’t need any more “awareness.”

Autism Speaks: Cost and Expense Report

Before you donate to Autism Speaks, consider where your money is going.

expenses

pie chart

(Table and pie chart depict the same information: twelve categories of expenses, in descending order, starting with advertising. Numbers are based on an independent audit of financial information from 2014. All expenses under $1,000,000 are consolidated into the misc. category.)

 

If you contribute $100 to Autism Speaks:*

$33 might be used for research.

Autism Speaks is “dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism” (mission statement). They refer to autism as an “urgent global health crisis” and support research that would enable prenatal testing. In other words, there is more focus on preventing the existence of autistic people than providing resources for them.

$37 would go to “awareness” and other services.

Did you notice that little orange slice on the left side of the pie chart? That’s the sliver going to family service grants. Some good can be done with this money; it is probably the only portion of the pie that has the potential to directly support autistic people. And it’s not worth it. Because do you know where else your $37 is being spent? On damaging and offensive “awareness” campaigns. Autism Speaks strives to “raise public awareness about autism and its effects on individuals, families, and society … to bring hope to all who deal with the hardships of this disorder” (mission statement). They devalue the lives of autistic people, frequently portraying them as a burden and consider this fear-mongering to be part of the “services” they provide.

$25 would go to fundraising.

 Charity Navigator’s latest rating (FYE 12/13) puts Autism Speaks’ financial performance as 2 out of 4, with a fundraising efficiency of $0.22.

$5 goes to management and general expenses.

In 2013, the president of Autism Speaks (Elizabeth Feld) was paid a salary over $340,000 (Charity Navigator).

Is that how you want to spend your money? I know I don’t.

(*Note: I excluded in-kind contributions and donated services when calculating these percentages. I believe this to be the most accurate way to portray their use of general monetary donations.)

This post is part two of three. See also: History of Autism Speaks, Why I Won’t “Light it Up Blue.”

 

History of Autism Speaks

Autism Speaks has an illustrious history of spreading fear and misinformation.

In 2009, Autism Speaks released the short film “I Am Autism,” featuring an ominous voiceover personifying autism. Statements included “I know where you live … I work faster than pediatric AIDS, cancer, and diabetes combined. … I will make sure that your marriage fails … I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain.”

Autism Speaks was also responsible for “Autism Every Day”, a video which has since been removed from their YouTube channel. Not only did it center on caregivers, portraying autistic people as a burden, but it also features a member of their board talking – in front of the child – about how she contemplated killing her daughter.

Apparently they did not learn from either of these debacles, because in 2013 co-founder Suzanne Wright published aCall for Action that referred to autism as a national emergency and highlighted the fear, exhaustion, and despair caused by having a child with autism. It also made some pretty huge generalizations about the capabilities of autistic people:

“Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.”

Around this same time (November 2013) Autism Speaks included the Judge Rotenberg Center – which uses aversive interventions such as electric shock – as a service provider in their resource fair at the DC Walk Now for Autism. The JRC has been condemned by the U.N. Special Rapporteurs on Torture and under investigation by The U.S. Department of Justice’s civil rights division (source). Promoting this institution in any way is beyond irresponsible; it is appalling.

However, that was not the first time that Autism Speaks supported harmful practices in the name of a cure, nor would it be the last. For the longest time, the organization failed to take a decisive stand on the issue of vaccines. They affiliated themselves with public figures that repeatedly advanced the anti-vaccine message in media. In 2009, Alison Singer resigned from Autism Speaks with the following statement: “I’ve concluded that as a matter of personal conscience, I cannot vote in favor of dedicating more funds to vaccine research that has already been undertaken and which I and many others find conclusive.”

Despite all the evidence debunking any connection between vaccines and autism, Autism Speaks continued to issue statements such as “it remains possible that, in rare cases, immunization may trigger the onset of autism symptoms in a child with an underlying medical or genetic condition.” It wasn’t until 2015 that they revised their official stance on vaccines, although their Strategic Plan for Science still stated: “Autism Speaks is funding studies on the underlying biology of autism, including studies to better understand medical and genetic conditions that are associated with autism that could potentially be linked to adverse responses to immunization” (Christine Vara).

This is not the kind of research that I want to support. Theirs is not the type of message I want to promote.  What about you?

I know a lot of people who have no idea why Autism Speaks is harmful. Perhaps even more who are aware of one or two items on the long list of controversies trailing the organization, but don’t consider them significant enough reason for boycott. This goes beyond an isolated incident or the actions of a single person. We’re talking about an entire organization which routinely, systematically ignores and dehumanizes the population that they are supposed to serve.

“Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions.  The priority cannot be autism parents, or autism grandparents.  It’s got to be actual people with autism.

No one says the Cancer Society does not speak for them.  No one describes the Cystic Fibrosis Foundation as an evil organization.  All that and more is said of Autism Speaks every day.” (John Elder Robinson, in his letter of resignation)

 

This post is part one of three. See also: Autism Speaks: Cost and Expense Report, Why I Won’t “Light it Up Blue.”

Housekeeping

Hello, lovelies.

Quick bit of housekeeping: this blog is currently under re-construction. You will notice that previous content has been wiped; some of it may resurface on relevant occasions, but feel free to ask if there is something particular that you would like to revisit. Right now I am queuing up posts for April – Autism “Awareness” Month. Stay tuned.

Questions, comments, concerns? Email me! (violetcoloredglasses at gmail dot com)