Noted Self-Advocate Cuts Ties With Autism Speaks

[Jefferson23]

By Michelle Diament

November 14, 2013

A prominent self-advocate is resigning from his post with Autism Speaks citing “destructive” public statements from the organization’s leadership and their disinterest in his ideas.

John Elder Robison says he has resigned from Autism Speaks’ science and treatment advisory boards, which help review scientific proposals that the organization considers funding.

In the role, he was one of, if not the only, individual with autism actively weighing in on decision-making at the group.

Robison said he was prompted to resign after reading a commentary this week by Autism Speaks co-founder Suzanne Wright who wrote on the group’s website about an “autism crisis” that she described as a “national emergency.”

in full: http://www.disabilityscoop.com/2013/11/14/noted-cuts-ties-autism-speaks/18893/

[proverbialwisdom]

1. Thank you for posting. This deserves to be widely read for general information and discussed.

http://www.disabilityscoop.com/2013/11/14/noted-cuts-ties-autism-speaks/18893/

...Autism Speaks has long had a touchy rapport with many self-advocates who object to the lack of representation of people with autism within the group’s leadership and have criticized the organization for making statements characterizing autism as an epidemic in need of a cure.

Aside: Katie Wright contributes to AOA, no mention of any of this there. AOA has had huge reservations about AS.

http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

[center]AUTISM SPEAKS to Washington - A Call for Action

On the eve of Autism Speaks' first-ever national policy and action summit in Washington, D.C. , Co-founder Suzanne Wright explains the urgent need for a national plan.[/center]

By Suzanne Wright
Date: November 11, 2013

This week is the week America will fully wake up to the autism crisis.

If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.

We’ve let families split up, go broke and struggle through their days and years.

No more. Tomorrow in Washington, D.C. we will gather an unprecedented number of bipartisan officials, congressional leaders and experts in every area of autism for a three-day summit. We will demand a national response.

Don’t our families deserve it? America has always been about its great people.

Yet, we seem to have forgotten our children - and our children are our future.

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.

This is autism.

Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.

This is autism.

On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally.

Maybe they have been up all night caring for their teenage child who’s having a seizure.
Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.

Maybe their child has been trying to bite them or themselves.

Maybe they can’t afford the trip to a doctor specializing in autism.

Maybe there is a waiting-list for ABA, speech and OT.

Maybe their insurance won’t pay.

Maybe they don’t have the money to pay a special lawyer to fight for school services.

This is autism.

If any of this sounds familiar, you know autism. And if you know autism, you know we are looking at a monumental health crisis. And, we have no national plan.

What I described above is really just the beginning. In the next ten years, 500-thousand Americans with autism will be growing up and out of the system which means they will no longer qualify for the services they rely on every day.

And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?

And, if they do – who cares for these children?

There is no national plan to build a city for 500-thousand people.

So let’s dial back a minute and consider the babies being diagnosed with autism every day in this great country. Do we have a plan for them? Are they all getting the same medical care and therapies across the board? Are we doing anything to guarantee they get a fair shot at a productive future?

We know children from minority and lower income families are not getting diagnosed as early as they should be, so their treatment begins later which might decrease their chance at progress.

How about in school? Is there a national curriculum for our children? Are we encouraging teachers around the country to share with each other lesson plans and methods that work for them? Is there collaboration?

But - there is no national plan.

Yet - our future depends on it.

Financially, we estimate it costs 2.3 million dollars to care for one person with autism for their lifetime, and it will be well over $137 billion dollars for all our children.

But money aside, these are our children. The late scholar Neil Postman once wrote “Children are the living messages we send to a time we will not see.”

What is our message?

We can’t even craft one – without a national plan.

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.

This is a national emergency. We need a national autism plan – NOW.

We are heading to Washington with a call for action on a national plan – NOW. We are asking our leaders to respond to autism with the urgency it deserves – NOW.

Washington – here we come – because we need to help our families – NOW.

Suzanne Wright and her husband Bob co-founded Autism Speaks in 2005.

[Jefferson23]

2. You're very welcome. This topic is obviously a self selected one as it involves

quite a bit of background and without it, the deep concerns and the divide that exists
between AS and the autism community will not be well understood. But I posted it
b/c I think it is worth stirring curiosity on the topic of Autism Speaks.

In brief, the Autism community does not appreciate Suzanne Wright, and this is completely
understandable...IF you can appreciate their perspective.

It speaks volumes that Robison left AS..more than most people in DC understand at
this point in time.

[proverbialwisdom]

3. Why didn't reports lead the evening news or make the front page of national newspapers?

http://www.autismspeaks.org/advocacy/advocacy-news/autism-speaks-and-washington-listens

Autism Speaks and Washington Listens

[img][/img]

Advocates and policymakers gather at inaugural autism policy and action summit to call for national autism plan

WASHINGTON, D.C. (November 15, 2013) – Autism Speaks yesterday was joined by hundreds of advocates on Capitol Hill. More than 260 autism activists from across the nation visited all 535 members of Congress, demanding a strategic national autism plan.

Parents and their children with autism, self-advocates, volunteers and leading researchers rallied together on the steps of the Capitol building, calling for the federal government to take action in support of the 1 in 88 individuals on the autism spectrum.

In addition, members of the Autism Speaks leadership team held meetings with high ranking Congressional leaders, including House Speaker John Boehner (R-OH) and House Minority Leader Nancy Pelosi (D-CA). During the meetings, three lawmakers agreed to join the Congressional Autism Caucus: Sen. Bob Casey (D-PA), and Reps. Tim Griffin (R-AR) and Kevin Yonder (R-KS).

The events marked the culmination of “Autism Speaks to Washington,” a first-of-its-kind three-day autism policy and action summit hosted by Autism Speaks in Washington, D.C. The summit began the evening of Tuesday, November 12, at a reception honoring members of the Congressional Autism Caucus, which is co-chaired by Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA), as well as Sen. Tammy Baldwin (D-WI).

“This moment has been eight years in the making,” said Autism Speaks Co-founder Suzanne Wright during the reception. “What a pleasure to see a bipartisan effort for our children. There are families and people living with autism in every corner of this country, and we need a level of research that meets the prevalence of autism.” Wright co-founded Autism Speaks with her husband, Bob, after their grandson was diagnosed with autism in 2005.

“The aging-out issue is a huge bubble that will make its way into society, and we are not prepared for it,” added Rep. Smith in reference to the 500,000 children in the U.S. with autism who are aging out of the system within the next decade. He went on to say what we do here not only helps our own kids, but also has a huge impact internationally.

Rep. Doyle called for Congressional action in 2014 to reauthorize the Combating Autism Act, which will otherwise expire in September. “We need to fund some of these programs that need funding…tell these members of Congress we need to start putting some dollars behind the Combating Autism Act,” he stated.

The summit reconvened Wednesday, November 13, at The George Washington University, and featured presentations unveiling Autism Speaks’ enhanced state and federal advocacy strategy, groundbreaking advances in science and research, and a discussion on the adult-services system. Autism Speaks also released the results of its National Housing and Residential Supports Survey. Wednesday’s speakers included House Majority Leader Eric Cantor (R-VA), Sen. Bob Menendez (D-NJ), Suzanne and Bob Wright, Autism Speaks President Liz Feld and The George Washington University President Steven Knapp.

“Families can pay up to $60,000 a year on autism treatment and services,” Bob Wright said during his welcoming remarks on Wednesday. “That’s more than many of our families earn in a year. We simply cannot afford not to have a national autism plan.” Wright also called for greater insurance coverage of autism treatments and called on the Senate to support the United Nations Convention on the Rights of Persons with Disabilities.

When asked about support for the autism community on Capitol Hill, Rep. Cantor reported deep bipartisan support for the parents and families of children affected by the disorder. Congress is trying to make such support “a priority commitment,” he said, adding that investing in research to develop the best therapies for addressing autism’s symptoms could provide tremendous return not only for families and children, but for the country.

Sen. Menendez, who was the original Senate sponsor of CARA (the 2011 reauthorization of the Combating Autism Act) and the sponsor of the AGE-IN bill (an adult services bill introduced in 2013), vowed to continue fighting to help the autism community and called for equal opportunity for citizens on the autism spectrum.

Wednesday evening featured a number of policymakers including Sen. Al Franken (D-MN); Sen. Edward Markey (D-MA), who defined the mission to help children with autism as the 21st century version of the Apollo space mission; and Vermont Gov. Peter Shumlin, who gave a touching speech about his childhood struggles with dyslexia. Gov. Shumlin also urged autism advocates to work on the state level with the nation’s governors. Singer Chelsea Stepp inspired the crowd with a performance of a song called “Beautiful Blessing,” which she dedicated to her sister who has autism.

“Autism Speaks to Washington” was live streamed in its entirety on AutismSpeaks.org. To watch each session from the three day summit visit http://www.autismspeaks.org/dcsummitlive .

[proverbialwisdom]

4. Please note scathing comment at link. nt.

Dang autocorrect.

[Jefferson23]

5. AS is a powerful group, the divide is sad when you understand who they are suppose

to be a voice for and the complete absence within that group of people with autism.

I believe AS has not responded to Robison leaving, they are concentrating on DC, without them.

[proverbialwisdom]

6. Critical points. Stand your ground and fight for common goals, don't you wish that would happen?

Tremendous need for all voices to be heard with tolerance. See comment at link by Patricia Elaine Chandler • 21 hours ago.

http://www.autismspeaks.org/advocacy/advocacy-news/autism-speaks-and-washington-listens

"Dear Congressman Jefferies,

As I sit and write this vitally important communication to you, I AM on my way to Washington DC to protest, powerfully and peacefully, outside of GWU, along with my Autistic Sisters and Brothers because it is time we Spoke for ourselves. We simply ask you, humbly and respectfully, to Listen, because we are AUTISTICS SPEAKING LOUDER, Than Ever Before Today.

I am writing to express my concern about the “Policy and Action Summit” being hosted by Autism Speaks this week. Specifically, I understand that Autism Speaks will be visiting all 535 members of Congress. Autism Speaks has a long history of excluding Autistic people from its advocacy efforts—including this summit and meetings. Further, as an organization they create and disseminate harmful Autism fear and tragedy rhetoric.

As your constituent, I ask that during your meeting with Autism Speaks representatives you vocalize your support of the position of Autistic people and their allies. There can be no national plan on Autism that excludes Autistic people. Autistic people deserve a national plan on autism that moves away from the language of pity, fear, and tragedy, and toward achieving equality, access, and inclusion in their communities. Autistic people are entitled to be fairly represented in discussions about them.

<>

[Jefferson23]

7. If I wasn't clear earlier, I am behind the autism community..they all have the right to be heard

without the filter of Autism Speaks.

Thank you for the post.

[HuckleB]

8. I know it's in Forbes, but it's a good piece on this issue.

Why Autism Speaks Doesn't Speak For Me
http://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/

and another piece of interest...

AWN SQUARES OFF WITH AUTISM SPEAKS OVER NATIONAL AUTISM PLAN
http://www.mmdnewswire.com/national-autism-plan-awn-autism-speaks-130285.html

and, on edit, one more:

Who does Autism Speaks speak for?
http://blog.sfgate.com/lshumaker/2013/11/14/who-does-autism-speaks-speak-for/

AS has been doing a great deal of disenchanting others for several years now. I think it's much more valuable to acknowledge self-advocates and science based organizations like Autism Science Foundation.

http://www.autismsciencefoundation.org/

[Jefferson23]

9. Fantastic information at the links, can't thank you enough for the contribution.

[HuckleB]

10. No problem! Thanks for starting this thread.

I was not up to date, so it's a great lead.

[proverbialwisdom]

11. More. Please note the mutual respect between John Elder Robison and AOA's Kim Stagliano.

Related AOA response citing Dr. Bernadine Healy (to be read in its entirety or not at all).

http://www.ageofautism.com/2013/11/open-letter-to-autism-speaks-suzanne-wright.html#comments

Open Letter to Autism Speaks' Suzanne Wright

By Anne Dachel

AOA Managing Editor Kim Stagliano's Note: In other Autism Speaks news, John Robison, Aspergian author and advocate resigned his position on the science board at Autism Speaks last week with THIS explanation. I've known John since before Look Me In The Eye was published and I consider him a friend. And while John and I differ on neurodiversity, I can agree that every American deserves acceptance and kindness and a full life. And I am encouraged by these words from him, "I also support the idea of developing therapies, treatments, and tools to relieve suffering and disability from both autism and the conditions that accompany it for some people. I know how hard life is for some on the spectrum, but I also see the gifts other autistics bring. " I do not see my girls' autism as bestowing gifts upon them - autism hobbles them 24/7. I do love them 100% and if they never make one iota of progress I will always love and care for them. Society, however, will not - unless we work toward treatment, therapies and a huge amount of social services. I do not have autism or Asperger's, so I don't think like someone who does. I think like an NT Mom. It's a distinction we sometimes ignore as we point fingers and choose sides. I'm moving past that - I have too much work to do for my kids. I have found AS to be as effective as a fish on a bicycle, disingenuous and and counterproductive to everything that darling boy in the photo (who is much older today) needs. My $.02. Thank you, Anne for this open letter.

On Nov 11, 2013, Autism Speaks put out an announcement---their "Call for Action."

Suzanne Wright wrote there was to be a "first-ever national policy and action summit" starting Nov 12 in Washington. She sounded an alarm about the lack of response and the need for action regarding the autism crisis in the U.S.

I carefully read what she said and I have a lot of questions about what this summit proposes to do. I decided to write. . .

MY OPEN LETTER TO SUZANNE WRIGHT:

Dear Suzanne,

<>

Anne Dachel, Media editor: Age of Autism
Posted by Age of Autism at November 18, 2013 at 5:45 AM

COMMENTS:

My Mom is a huge supporter of our families. When she made that speech Suzanne was basically talking about our family's experience with Christian. I used to phone my Mom constantly in tears because I did not know how to help Christian and after a year of early intervention he just got worse. We had yet to figure out his GI issues. I think by National Plan my Mom would like to see the White House designate autism as a high priority, as they did with HIV in the 1980s.

My Mom is the greatest. Suzanne has absolutely supported vaccine research and is hopeful AS will get this done. However, she does not run AS. The person choosing the grants is Dr. Rob Ring. Like many of you, I have been very disappointed with most of the grants AS has chosen. I believe them to be overly conservative, with not nearly enough attention or investment in environmental and biomedical research. Believe me, I have spoken at great length to Dr. Ring about this! I am hoping things change, time will tell.

Posted by: Katie Wright | November 18, 2013 at 10:50 AM

Autism Speaks: How Bernie Marcus's persistence built an international voice for autism
Published on Apr 5, 2013

After starting small, Bernie Marcus has spent the last 20 years bringing attention and money to the field of autism. Had he "thrown in the towel" early, he says "we'd be back where we were ten years ago." Lesson learned: "You have to be patient."

RECOMMENDED: 'Environmental' and 'biomedical' uttered by multiple participants without challenge. Watch when video becomes available in archives.

http://iacc.hhs.gov/events/2013/strategic-planning-workshop-agenda-nov15.shtml
http://videocast.nih.gov/PastEvents.asp

[proverbialwisdom]

12. RECOMMENDED.

http://videocast.nih.gov/summary.asp?Live=13225

Air date: Friday, November 15, 2013, 8:45:00 AM
Time displayed is Eastern Time, Washington DC Local

Category: Interagency Autism Coordinating Committee
Runtime: 07:33:03

Description: The workshop will feature discussions between IACC members and external subject matter and community experts regarding updates from the field and from the community that the committee may consider when developing the 2013 update of the IACC Strategic Plan.

[Jefferson23]

13. Thank you!

[proverbialwisdom]

14. You're welcome, the same to you!

[center]

Thank YOU for the important thread.[/center]