12/09/2013

An Open Letter to Autism Speaks' Sponsors Who are Autism Parents

Dear Laura Slatkin, Joey Santley, Heidi Thompson, and Artie Kempner:

I am the sister of a young man with Aspergers and a fellow member of the autism community. By now, you're probably aware that many people, myself included, are boycotting Autism Speaks and are calling on your organizations to withdraw their financial support. I recognize that you love the autistic people in your life, just as I do, and that by supporting Autism Speaks, you are pursuing what you believe is best for them. However, I'd like you to understand why I and others see Autism Speaks as actively harming our loved ones, and would like you to direct your support elsewhere. I will list some possible alternatives at the end of the letter.

The first problem with Autism Speaks is that their money does not serve the people they claim to help.  According to their 2012 financial reports, only 3% of their spending goes towards services for autistic people.  Meanwhile, they spend more on fundraising, ads, administrative costs, and other expenses (43%) than on research and services combined (28%). On Charity Navigator, Autism Speaks is in the bottom 10% for money spent on its mission. As a result, it received only 1 out of 4 stars for financials.  You may ask: "why does this matter, if even a little money could help?"  While one can easily find testimonials from people who have benefitted from grants, it's harder to track "anti-testimonials": the far greater number of people who could have been helped by a grant. As you are doubtless aware, Autism Speaks does not directly provide services, apart from the informational kits on their website. They simply award grants to local service providers.  So, if one donates $100 to Autism Speaks, $3 will go towards directly helping autistic people and their families.  But if one were to donate $100 to a charity that provides services, close to $100 would go towards serving this population.  Thus, Autism Speaks actually takes money away from the local communities that provide services to autistic children and adults every day.

The second problem is the way Autism Speaks presents autism to parents of newly diagnosed children and to the general public.  No one could doubt that autism parenting is an often exhausting, 24/7 job, and few parents have all the emotional or financial support they need.  When their children's disabilities are severe--such as not speaking, self-injury, frequent meltdowns, or large developmental delays--it becomes still harder to care for and educate their children.  The problem is, Autism Speaks does not simply tell the world that autism can involve struggle and severe disability, and that parents and autistic people need support.  They also describe autistic children as "missing" and as changelings "stolen from" their parents.  And they portray parents' lives as so miserable as to not be worth living.  Autism Speaks produced a video, Autism Every Day, where a board member talks about wanting to drive herself and her autistic daughter off a bridge in front of this daughter.  This rhetoric justified, and may have helped cause, a recent burst of parents murdering their autistic children (a list of which crimes can be found here).

Autism Speaks says of parents: "These families are not living.  They are existing.  Breathing--yes.  Eating--yes.  Sleeping--maybe...life is lived moment-to-moment...in despair.  In fear of the future."

I don't know your personal experience with raising an autistic child, but many autism parents, including those with disabled kids, view their lives very differently.  I would be happy to put you in contact with all of those with whom I am acquainted.

On her Twitter account @autismand1, a mother said:

"My son is severely autistic, intellectually disabled, but even in our hardest moments, Autism Speaks does not speak for us."

And then there's Beth Ryan, whose testimonial appears here.  Her daughter is full of love, life, and happiness.  Yet, "on paper, she looks like a good poster child for the autism tragedy story. Non-speaking. Insomnia. Needs full personal care. Needs 24 hour supervision. But...the hardest part of having an autistic child, for me, is dealing with other people. And the fear that...makes many of my nights sleepless is that Evelyn is growing up in a world that hates her...my child could be denied a life-saving organ transplant because she is autistic."

Other parents found that less of their suffering came from autism itself than from believing messages like those Autism Speaks promulgates.  They found that they were not only happier, but could better help their children when they viewed autism, and their role as parents, differently.  You can follow the journey of one such parent here, in Jess's open letter to Suzanne Wright.  When her daughter was first diagnosed, she said, "I was terrified.  I sobbed. I retched over a toilet bowl.  I thought, because of everything that I thought I knew about Autism, that there was no real hope of a future for her.  What I knew came of things like [the Autism Every Day video]...Three years later...I've discovered a rainbow between the black and white. I've chosen to live in it."

Ariane Zurcher relates that she desperately pursued potential "cures" as if they were chemotherapy, some of which left her daughter Emma traumatized.

"Yet none of this helped me find ways to help her communicate. Once we found a way to help her write and find her 'voice' was when the real miracles began to happen. Helping my daughter communicate is what she is thanking us for now, not all those so-called 'cures' we traumatized her with."

The Autism Speaks message inadvertently makes it even harder for parents to find the social support they so desperately need.  Beth Ryan has experienced this rejection by other parents firsthand.  "I've been dubbed 'sanctimommy' and called a liar for saying that I am not jealous of parents of non-autistic children. I am quite literally an outcast for loving my child the exact way that she is." Autism parenting can be a 24/7 job.  Parents should be getting support from friends and family, not attacked for failing to conform to a model that doesn't fit their experience.

Certain aspects of Autism Speaks' message may make it harder for autistic people to find their way once they grow up.  Autism Speaks describes a future 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." You and I know that, in fact, autism is a broad spectrum ranging from people affected this way to those who can live independently, with a little support and understanding from others.  But many people who aren't close to anyone with autism don't know this, and may be misled by this sort of media into thinking there are no autistic adults capable of working, even with support.

I'm especially concerned about this problem because my brother, now applying to college, will soon be looking for jobs.  If he needs any supports, workplaces will not even consider offering any, because it will never have occurred to employers that a person on the spectrum could be anything but an unemployable burden.  Some adults like my brother, though able to get jobs, have difficulty keeping them.  This is in part because, since they can work, they are assumed non-autistic, and any autistic behavior they display is misinterpreted.  If they fail to establish relationships with supervisors and coworkers due to their social disability, they may be seen as unfriendly and shunned.  If they cannot network in crowded bars due to difficulty understanding speech when there's a lot of background noise, they will be perceived as unwilling to network in general, not incapable in this particular setting.  Their behavior, in general, may be misinterpreted not as autistic, but rather as rude, odd, or childish.  I don't know how old your child is now, or whether they will be able to work.  But many in the autism community are facing this problem right now, and many more will in the coming decade.  None of us can afford the sort of misunderstandings caused by Autism Speaks' approach to awareness.

You should also knonw that many autistic people can hear what Autism Speaks says about them.  Not all of these people can speak or live independently.  Amy Sequenzia, who can do neither, wrote a testimonial on the Boycott Autism Speaks website.  An eight year old reading the organization's call to action over his unsuspecting mother's shoulder asked, "Mommy, do I make you ill?"  No human being of any age or ability level should ever have to ask such a question.

A surprising fact about autism explains why non-speaking people, who have been deemed "low functioning," nonetheless know what Autism Speaks says about them.  Some autistic people learn to read before they learn to speak (part of a condition called "hyperlexia"), while others may learn to read and write but not never learn to speak.  As a result, more autistic people can read than speak. And some autistic people who cannot talk can still read Autism Speaks' materials.

Contrary to its name, Autism Speaks does not speak for most autistic people.  Indeed, it actively denies them a voice by not allowing them to serve in leadership positions or speak at events.  Their sole autistic board member, John Elder Robison, recently resigned in protest at their recent call to action.  You can read his resignation statement here.  They currently have an autistic Social Marketing Coordinator, Kerry Magro.  However, he does not hold a position with decision-making responsibilities.  Autism Speaks has been told countless times that many autistic people can hear what the organization says about them.  They've been told autistic people do not like being called changelings and monsters, or being blamed for making their parents get sick or divorce (who would?).  Yet the organization has not changed its message, and rarely responds directly to complaints.  Autism Speaks not only does not speak for autistic people, it does not even care that they are listening.  This should matter to every autism parent, because one day, their child will be an adult and will be treated the same way.

Finally, please understand that Autism Speaks is the only charity routinely denounced by the very people it claims to help.


You and I both know that living with a disability is a struggle, and autistic kids and their parents could use support.  Your support could help these organizations make a real difference:

Easter Seals.  Phone: 1(800)-221-6827.
Provides child care, educational and therapeutic services, school-to-work transition programs, special schools, and more.

Autism Now (run through The ARC).  Phone: 1(855)-828-8476. Fax: 1(222)-534-3731. Email: info@autismnow.org.
Autism Now and The ARC provide early intervention, supported employment, job training, housing, transportation, and self-advocacy support.  They advocate, provide information, and refer people to appropriate services.

Autistic Self-Advocacy Network (ASAN). Phone: 1(202)-596-1056. Email: info@autisticadvocacy.org.
Run by autistic people, their current projects include improving health care access; teaching college students self-help and self-advocacy skills; and matching autistic adults with private and government employers.

Project Dandelion. Phone: 1(408)-422-2757. Fax: 1(815)-377-2311. Email: miha.ahronovitz@ahrono.com.
Creates jobs and provides job training for autistic adults.

The Autism Science Foundation.
Funds and communicates autism research.


Thank you for caring about autistic people and their families.  I hope you will choose to translate your concern into positive change for people on the autism spectrum.  While there are many differences of opinion in the autism community, I think we can all agree on a need for respectful, appropriate education, employment, and housing for people on the autism spectrum.

P.S. For more information on the grassroots campaign to boycott Autism Speaks, please contact Boycott Autism Speaks at info@boycottautismspeaks.com and 1(802)-338-1425.