Autism Speaks Aut to Listen to John Elder Robison

"Hushed" April Dawn Griffin
"Hushed" April Dawn Griffin

by Debra Hosseini

Suzanne Wright, a founder of Autism Speaks, published a controversial op-ed piece on Monday this week. I don’t follow Autism Speaks and I try to stay out of politics so I didn’t even know of the blog. Kelly Green, founder of Autismhwy.com who is very involved in the advocacy movement for autistic people, called me in fumes.

Angela Weddle "Self-Portrait"

Angela Weddle “Self-Portrait”

“I can’t believe what she’s saying. She has the entire autism community enraged,” Kelly says.

James W Cook "Self-Portrait

James W Cook “Self-Portrait”

I tell Kelly I think Suzanne Wright’s piece ia politically driven to make potential donors feel sorry for autistic people and their families. I’m used to this tactic. Many years ago I was involved in an organization involved in state-wide advocacy in California. One of the leaders of the organization, who was a former Secretary of the Senate and is now a lobbyist, told us that we had to make politicians feel sorry for us in order to get funding. He also said “there is nothing good about autism.” Shortly thereafter I resigned from the California Autism Coalition. I also turned off the news.

Kimberly Gerry-Tucker "Self-Portrait - Shattered"

Kimberly Gerry-Tucker “Self-Portrait – Shattered”

Our kids internalize the messages they hear in the media and I don’t want Kevin (my son) hearing these negative messages, especially from an organization who’s mission is to support autistic people. Autism Speaks has a huge media presence. What is the message they are spouting?

Rosemary Stephens "True Colors"

Rosemary Stephens “True Colors”

From Suzanne Wright’s blog autism “families are not living.” We’re living a life of “despair.”

Why are they spreading a message of fear? I’m sure they have many media specialists they consult with before they blog. Do the media specialists tell them that fear will get them more donations?

I try to teach my children discrimination. What we see on TV and in the media is often wrapped in a package that has no substance. According to the Autism Self Advocacy Network, Autism Speaks only gives four percent of it’s entire budget to Family Service Grants. You’d think if Suzanne Wright was so concerned about families more money would be allocated.

Bareface "Self-Portrait"

Bareface “Self-Portrait”

Today, Kelly called me with hopeful news. John Elder Robison, author of Look Me in the Eye and Raising Cubby, resigned from his roles with Autism Speaks. I hope you read his blog because he’s eloquent in his reasons why he’s resigning.

John Elder Robison’s blog is so well-written, it speaks for itself. I asked people on the spectrum to comment on this topic.

April Dawn Griffin says, “I was horrified to discover how autism is seen. A lot of things happened to me growing up but I was never told I was disabled.” she goes on to say “We speak with art, song, poetry, even in silence we are speaking for ourselves.”

7 year-old Sarah Smith self-portrait

7 year-old Sarah Smith self-portrait

Jennifer O’Toole writes “Who is anyone else to say that my life is defective? That my genes are less? Our nation fought a war about 50 years ago against the notion that one life is less human, less valuable, less real than another. What’s the difference now? We are again hearing of barbarous bleaching treatments – of efforts to “undo” the genetic differences that make us, us. I believe, word gymnastic aside, that’s called eugenics.”

The Art of Autism will keep you abreast of other’s opinion on our daily newspaper.

The Art of Autism’s mission is to shift the dialogue about autism. We support John Elder Robison in standing for his truth. We also don’t deny that many families have significant challenges and would love if Autism Speaks morphed into an entity that actually helped people on the autism spectrum, instead of devoting so much of their time to finding an elusive “cure.” We publish articles about what self-advocates say. Young Finn Christie has an opinion about What’s Wrong with Creating Perfect Babies.

"Hushed" April Dawn Griffin Au

“Hushed” April Dawn Griffin Au

April writes about the piece above “This is about being hushed and ignored – based on gender the day I drew this self portrait but it applies to autism too. That’s what it feels like when someone hushes you and speaks FOR you.”

Why doesn’t Autism Speaks support little organizations by having a free resource fair? Don’t they want to help the families living in “despair”? The fees to be a vendor at their fairs are exorbitant. Many “little” organizations that do much good can’t afford to be at Autism Speaks Walks. What’s that about?

Erin Clemens Abstract Self-Portrait

Erin Clemens Abstract Self-Portrait

I usually don’t write negative blogs because I choose to focus my energies on supporting positive change. This is an exception. I hope on April 12 in Covina people who really support autism and their families decide to attend the Autismhwy.com Autism Chalk Walk Festival and opt out of the Autism Speaks walk event at the Rose Bowl. My vision is that people who give money will know and embrace what they support. Give donations with intention.

David S. Smith Self-portrait

David S. Smith Self-portrait

Here are a few wonderful organizations that the Art of Autism supports. They all accept donations.

Autcards.com
Autismhwy.com
Artists with Autism
The Autism Chalk Festival
The Celebrate Autism Foundation
Autism Movement Therapy
The Miracle Project
Hidden Wings
Exceptional Minds
Autistry Studios
Seeds for Autism
Autism Brainstorm
Harambee Arts

I know there are so many organizations that support people on the spectrum, feel free to comment about your own.

7 Comments

  • Donna Betts says:

    Debra, thank you for bringing this to our attention. I’ve read Wright’s Op Ed, and now John’s post. Though I can appreciate John’s reasons for resigning, it is unfortunate b/c the involvement of someone like him is exactly what Autism Speaks needs. I appreciate your statement, Debra, “I tell Kelly I think Suzanne Wright’s piece is politically driven to make potential donors feel sorry for autistic people and their families.” That could very well be the case. Whatever Wright’s rationale, her message has generated some very vocal reactions, and rightly so, which deserve a response and correction on the part of Autism Speaks. Meantime, having attended yesterday’s Autism Speaks event in DC, I was very impressed with what the organization is doing RIGHT. A few hundred parents from around the US were present, and among other activities, received training on how to approach their members of Congress during their Hill Day event today, to advocate sponsorship and reauthorization of various bills, etc., for the benefit of people with autism. And, despite John’s comment, “Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults,” many of the parent advocates in attendance have children with autism who are now adults, and that was a main topic addressed during yesterday’s presentations. So, while the founders of Autism Speaks should be accountable to the mistakes they have been accused of making, it is a shame that this is presently overshadowing the good work that is being done by members of their state chapters, the parents, and other advocates who associate with and support this organization.

  • John says:

    It is important to remember that John Elder Robinson’s remarks in his resignation letter represent a decision arrived at after deep persuasion. Persuasion by whom? Why as the words “cure” and “vaccine injury” so blackened that one ageing part of the autism community instead encourages extermination of a class of people with weasel words now, like “recovery” or “modification” or “elongating the vaccine schedule”. Again, persuasion. But whose persuasion? That of the Autistics who have found their voices from deep within where only they may go… and their growing number of perspective-shifted allies. There is no possibility of a reversal of these truths that will flow incessantly, transforming the issue of Autism while the remaining quacks, grievers and plonkers experience a ever-reducing opportunity to PROFIT from attempts to externalise and falsify what autism truly is – a profoundly different way of being. The flow is ALL one way. Recognise the signs. The true lion is roaring.

  • Travis says:

    It is very unfortunate that Autism Speaks and other Autism organizations around the country fail to recognize the real needs of people living with autism across their lifespan. Autism Speaks lives by the scare tactic. If they can just send a message with enough media presence that will scare someone into donating money to them before the person really knows what they are giving the money for or why they are giving it. You might say autism speaks is a media bully who has mastered the art of manipulation of an uneducated society. Autism Speaks does not speak at all for me as an adult with autism.

  • November 12, 2013
    The Autistic Self Advocacy Network (ASAN), the leading national advocacy organization run by and for Autistic people speaking for ourselves, and the Association for Autistic Community (AAC), an Autistic-run organization focusing on advancing Autistic community and culture, issued the following statement on November 12th, 2013 regarding Autism Speaks’ “Autism Speaks to Washington” Policy Summit:

    We are profoundly concerned by Autism Speaks’ “Autism Speaks to Washington” Policy Summit to take place at George Washington University this week. Autism Speaks has a long and continued pattern of exclusion of Autistic voices from its work on autism. As an organization without a single Autistic person on its board of directors, Autism Speaks is the last group our nation’s leaders should be entrusting with the creation of a “national plan to address autism”.

    This week, Autism Speaks co-Founder Suzanne Wright announced the opening of the Policy Summit by characterizing autistic people as kidnap victims and our families as nothing more than victims of tragedy and burden. She cited inaccurate and offensive statistics claiming that Autistic people cost our nation tens of billions of dollars annually. She does this as her organization devotes only 4 cents on every dollar donated to them to supporting autistic people and our families. She does this as her organization supports pity, fear and segregated housing and service-provision in their advocacy. Is this the organization that we want speaking on our behalf? We think not.

    As policymakers and disability community leaders consider how best to support the needs of autistic adults, it is vital that they reach out to organizations run by and for Autistic people ourselves. Groups that persist in excluding Autistic voices and endorsing outdated and segregated models of service-provision have no place leading the national conversation on autism. We deserve better.

  • if you google Autism $peaks the following link comes up on the first page: an excellent exposition of all we have been saying. ON THE FIRST PAGE!!!!! People who understand the process whereby links rise to the top on search engines will realise that this article has been read by thousands if not millions to put it in this position. Hopefully the tide is beginning to turn!

    http://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/

  • dennis says:

    Message. The whole – and nearly the ONLY – reason the Wrights do what they do is to increase their ‘power expressed as social dominance’. As such, ‘autism’ and autistic people are predominantly ‘a means to an end’. The sole diluent that I see to their ‘social power-grab’ is the thought of ‘revenge’ projected at ‘dark forces’ – which have the ‘name’ of Autism. ( This sounds like ‘woo-woo’. In some ways – chiefly in the unconscious, the realm of instinct, it IS)
    Since the Wrights are in a state of Narcissistic rage – their idealized child was ‘stolen’ from them by
    those ‘dark forces’ (the precise same dynamic behind the changeling myths) – they will say and do ANYTHING in order to win; as such, they will proceed as if they utterly lacked any semblance of a conscience. As such, I would not put murder/genocide/ abuse /torture / etc. beyond them.
    After all, who denies “the God”?

  • I’llright away grab your rsss as I can’t in findikng your e-mail subscrription hyperlink
    or newsletter service. Do you’ve any? Kindly let me realize so that I may just subscribe.

    Thanks.

Leave a Reply

Your email address will not be published. Required fields are marked *