12/10/2013

Open Letter to Neurodiverse Celebrities

Dear friends and fellow advocates,

I am the older sibling of a young man with Aspergers and a member of the autism community.  I'm writing to you because you have come out to the world as having a developmental disability and are working for acceptance of your condition.  You may have ADHD, dyslexia, dyspraxia, Sensory Processing Disorder, or other diagnoses.  I wanted to let you know about an opportunity to support people on the autism spectrum.  You may know and love autistic people, or perhaps you share common experiences of struggle and stigma.  Or you may even share a diagnosis--many autistic people share diagnoses or symptoms of ADHD, dyslexia, dyspraxia, and SPD.  Right now, autistic people are protesting against Autism Speaks, which has positioned itself as the voice of the autism community, yet actually causes harm to autistic people and their families.  Autism Speaks demonizes autistic people, denies them a voice, and diverts services away from helping them and their families.  I think you'll agree autistic people deserve better. Please read on and find out how Autism Speaks hurts autistic people, and how you can help.

The first reason Autism Speaks harms autistic people: their money does not serve the people they claim to help.  According to Autism Speaks' 2012 financial reports, only 3% of their money goes towards services for autistic people.  Meanwhile, they spend more on fundraising, ads, administrative costs, and other expenses (43%) than they do on research and services combined (28%).  No wonder Charity Navigator gave them only 1 out of 4 stars for financials, putting them in the most unethical ten percent.  Why does this matter, if some people do benefit?  Autism Speaks doesn't provide services directly; it awards grants to the organizations that do.  So, if you give $100 to Autism Speaks, only $3 will go towards helping autistic people.  But if you give $100 to an organization that provides autism services, close to $100 could go towards helping this population.

Second, Autism Speaks presents autistic children as not fully human, and their parents' lives as not 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 her daughter.  Meanwhile, this autistic daughter is hugging her mother and trying to comfort her.  This rhetoric justified, and may have helped cause, a recent burst of parents murdering their autistic children--most recently, the parents of Issy Stapleton and Alex Spourdalakis.

Of parents, Autism Speaks says: "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."

That's not how most autism parents see their lives--even those with severely disabled kids.  For example, one mother says on her Twitter account @autismand1:


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

Then there's Beth Ryan, whose testimonial appears on the Boycott Autism Speaks webpage. 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."

Autism Speaks' writing hurts parents by teaching them to see their lives as a tragedy, and to approach their children with fear rather than love and acceptance.  Many of these parents believe Autism Speaks' message made it harder for them to help their children with their disabilities.  One such parent is Ariane Zurcher, who once desperately pursued cures that left her nonverbal daughter, Emma, traumatized.

When other parents pick up the Autism Speaks message, they deny parents with autistic children the support they desperately need. Beth Ryan says, "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 their friends and family, not ill-informed attacks.

Worse, many autistic people can hear what is being said about them.  Including those who can't speak or live independently, such as Amy Sequenzia, whose testimonial you can read here.  Including eight year olds reading the organization's call to action over their unsuspecting mother's shoulder, and asking, "Mommy, do I make you ill?"  (A surprising fact about autism: because some learn to read before they learn to speak, and some learn to read but never learn to speak, more autistic people can read than speak.  So, nonspeaking people may well be reading and understanding Autism Speaks' materials).

Third, Autism Speaks refuses to give autistic people a voice by allowing them to serve in leadership positions or speak at events.  This is the main difference between Autism Speaks and the leading organizations that advocate for the ADHD, dyslexia, SPD, and dyspraxia communities. 

Autism Speaks' sole autistic board member, John Elder Robison, recently resigned in protest at their "call to action."  You can read his resignation statement here.  Autism Speaks does have an autistic Social Marketing Coordinator, Kerry Magro; however, he has no decision-making power.  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 (no one would!).  Yet they have neither changed their message nor directly addressed most of the complaints.  When we wrote to corporate and celebrity sponsors en masse yesterday, Autism Speaks did not reply to a single tweet; however, they thanked Holly R. Peete for criticizing us and telling us to "be more positive."  Autism Speaks not only does not speak for autistic people--it does not even care that they are listening.

Finally, Autism Speaks is the only charity routinely denounced by the very people it claims to represent.  Again, I know of no parallel in the ADHD, dyslexia, dyspraxia, or SPD communities.




There are several ways you can help.


First, you can speak out through social media or even public appearances.  People do not necessarily care about the opinions of a ragtag group of autistic people and parents of autistic kids, but they care what you think.

Second, you can mobilize the ADHD, dyslexia, dyspraxia, and SPD communities.  I'm familiar with CHADD in particular myself, and know there are some amazingly compassionate, committed, and vocal advocates there.  Some of us are part of your communities, and some in your communities are also part of the autism community.  Let's work together!



Lastly, you can donate to organizations that really do help the autism community.  Here are just a few I know are doing good work:



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 adults with private and government employers.

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 (Through The ARC). Phone: 1(855)-828-8476. Fax: 1(222)-534-3731. Email: info@autismnow.org.
Provides early intervention, supported employment, job training, housing, transportation, and self-advocacy support.  Advocates for disabled people, provides information, and refers them to appropriate services.

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

Research:
The Autism Science Foundation.
Funds and communicates autism research.
 
For more information about the movement to boycott Autism Speaks, please contact Boycott Autism Speaks at info@boycottautismspeaks.com and 1(802)-338-1425.

Thank you for supporting acceptance for neurodiverse people.  We hope you will choose to support the autism community's push for support and self-determination.