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“light it up blue” isn’t autism awareness, it’s advertising for Autism Speaks

2 Apr

Tomorrow is Autism Awareness Day, by some calendars at least.  The United Nations, for example made a resolution in 2007 to designate April 2nd as “World Autism Awareness Day”.

Resolution adopted by the General Assembly on 18 December 2007 [on the report of the Third Committee (A/62/435)] 62/139.

World Autism Awareness Day The General Assembly,

Recalling the 2005 World Summit Outcome and the United Nations Millennium Declaration, as well as the outcomes of the major United Nations conferences and summits in the economic, social and related fields,

Recalling also the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, according to which children with disabilities should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community, as well as the full enjoyment of all human rights and fundamental freedoms on an equal basis with other children,

Affirming that ensuring and promoting the full realization of all human rights and fundamental freedoms for all persons with disabilities is critical to achieving internationally agreed development goals, Aware that autism is a lifelong developmental disability that manifests itself during the first three years of life and results from a neurological disorder that affects the functioning of the brain, mostly affecting children in many countries irrespective of gender, race or socio-economic status, and characterized by impairments in social interaction, problems with verbal and non-verbal communication and restricted, repetitive behaviour, interests and activities,

Deeply concerned by the prevalence and high rate of autism in children in all regions of the world and the consequent development challenges to long-term health care, education, training and intervention programmes undertaken by Governments, non-governmental organizations and the private sector, as well as its tremendous impact on children, their families, communities and societies,

Recalling that early diagnosis and appropriate research and interventions are vital to the growth and development of the individual,

1. Decides to designate 2 April as World Autism Awareness Day, to be observed every year beginning in 2008;

2. Invites all Member States, relevant organizations of the United Nations system and other international organizations, as well as civil society, including non-governmental organizations and the private sector, to observe World Autism Awareness Day in an appropriate manner, in order to raise public awareness of autism;

3. Encourages Member States to take measures to raise awareness throughout society, including at the family level, regarding children with autism;

4. Requests the Secretary-General to bring the present resolution to the attention of all Member States and United Nations organizations.

76th plenary meeting 18 December 2007

While I’m sure that Autism Speaks lobbying had much to do with that resolution, it’s an awareness event. No where do you see any mention of Autism Speaks nor statements that we should “light it up blue”. Yet over the years, Autism Speaks has made autism awareness into autism speaks awareness. And no where is that more obvious than on April 2nd with their “light it up blue” event.

Is blue the color of autism? No. It’s the color of Autism Speaks. But Autism Speaks is out there asking people to shine blue lights for autism awareness. A whole section of their shop (yes, they have an online shop) is devoted to “light it up blue” merchandise. All complete with the Autism Speaks logo.

Here’s the text from the Autism Speaks web page on how to “light it up blue”. Each section brings you back to Autism Speaks. Shine a blue light..and project the Autism Speaks logo. Wear blue, including autism speaks pins or accessories. Blue=Autism speaks, basically.

How to LIUB

In honor of people with autism worldwide, iconic landmarks, hotels, sporting venues, concert halls, museums, schools, universities, bridges, retail stores, and thousands of homes will light blue beginning on April 2!

Light Homes, Businesses, Schools, and Landmarks Blue

Change outdoor or indoor white bulbs to blue bulbs.

Tint windows with blue gel sheets

Cover existing fixtures with blue gel filters

Project the Autism Speaks puzzle piece or Light It Up Blue logo on walls or buildings

Wear Blue

Ask family, friends, coworkers, and staff to wear blue (ties, scarfs, shirts, etc.)

Supply Autism Speaks lapel pins, bracelets, or other blue accessories to wear during the month of April.

Post Blue

Personalize your LIUB Selfie Sign to tell us where you Light It Up Blue

Post your photos on Facebook, Twitter, Google+, Instagram, or Flickr with the hashtag #LIUB to be a part of the global autism awareness movement!

Turn your website blue with our Site It Up Blue kit or add the Light It Up Blue logo with a link to autismspeaks.org/liub

Turn your Facebook or Twitter profile picture blue

Tweet autism facts with the hashtag #LIUB

Raise Awareness with Blue

Distribute information about autism, World Autism Awareness Day, and Light It Up Blue in your establishment, neighborhood, or company.

Invite a local Autism Speaks representative to speak to your staff, school, or town about autism and the Light It Up Blue campaign.

Reach out to local media to let the community know about your great work for the autism community and your support of autism speaks!

Donate

Click here to donate!

Text AUTISM to 25383 to give $10*

Host your own fundraising event

Use this form to mail funds to Autism Speaks

Hey, you can take a “light it up blue” selfie. Complete with Autism Speaks logo.

yeah blue for AS

Autism Speaks is corporate autism. They do some things I appreciate and many things I really, really (really) don’t. For example, perpetuating the vaccines-cause-autism idea, an idea which may be second only to the refrigerator mother idea in causing harm to our community. Just in the past couple weeks Autism Speaks had to put out a new message on the idea, because the science based and helpful message by their Chief Science Officer conflicted with the non-science educated founder’s beliefs. Autism Speaks doesn’t have autistic voices in important positions within the organization, an amazing position given the sizable self-advocate population they claim to serve. Autism Speaks has a history of perpetuating stigmatizing messages (search for “I am autism” if you are unaware of this). Autism Speaks has funded quality research over the years and I appreciate that. But every time I start thinking Autism Speaks is starting down a good path they do something that reminds me: they are not my family’s autism organization. They don’t represent my values. They don’t represent my family.

I won’t be “lighting it up blue” tomorrow. I won’t be encouraging people to “light it up blue”. I hope people will be more aware of the needs of people like my kid. I hope more that they will act. I will follow up with another post, but I’ll say it here now: remember the phrase “think globally, act locally”? Feel like donating to an autism charity? I bet you have an autism school in your area and autism schools need donations. I bet there are adult programs in your area that could use some support. That’s my suggestion for April 2nd.


By Matt Carey

Autism Speaks:  The results of this research are clear: Vaccines do not cause autism…but doesn’t let that statement stand alone.

26 Mar

Autism Speaks has come out with some very strong statements about autism and vaccines.  And the back peddled. 

First, here is a statement by Robert Ring, Chief Science Officer:

Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.

Rob Ring
Chief Science Officer, Autism Speaks

 
In the past Autism Speaks had been sympathetic towards the idea that vaccines cause autism.  More than sympathetic, some would say.  Such a clear statement as above would have been unthinkable from Autism Speaks only a few years ago.
I wish they had made these statements earlier, but I am glad they are making these statements now.  The vaccine hypothesis has been the most damaging idea in autism since the refrigerator mother theory.  With Autism Speaks position as a well known autism organization, perhaps even fewer families will get caught in the vaccines-cause-autism trap in the future.Here’s the way the Autism Speaks vaccines and autism page looked just last year.  It includes many problematic statements and concludes: “A list of publications that used VAERS information to study associations with autism can be found here“.  “Here” is a link to pubmed with the search terms “vaers” and “autism”.  No surprise, it’s a list that is padded out by works by Mark and David Geier.  The Geiers have been performing poor research for years and have been discussed here at Left Brain/Right Brain many times.


The above statement by Mr. Ring was picked up by the press in February as it was so clear.
Next, Bob Wright, co-founder of Autism Speaks:
 

Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually  made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.

Bob Wright
Co-founder, Autism Speaks

It’s a fairly stilted paragraph in my read.  It comes across as though Mr. Wright is trying to appear to ride the fence while at the same time pulling back dramatically from the clear statement by Mr. Ring.  Scientific research has not directly connected autism to vaccines?

Even with that, I can’t imagine that admitting that vaccines are “important” will go over well in some circles.  Close circles.  Even “important” is to positive a word for some.  But, seriously, here we have an invention that has saved more lives that possibly any other in medical history and we get “important”?

Yes, Mr. Wright, efforts must be made to educate parents about vaccine safety.  That’s what your chief science officer did.  Sadly, you can’t let Autism Speaks be a science led organization.

By Matt Carey

Note: I accidentally published an early draft of this article yesterday.

Is Autism Speaks supporting vaccine-autism causation proponent Congressman Bill Posey?

19 Aug

Someone forwarded an email from the “Autism Action Network” recently. The email asked people to support Congressman Bill Posey’s election campaign by attending a fundraiser. Looks like a few big donors to Mr. Posey were going to attend, including Sallie Bernard of SafeMinds and Autism Speaks. Ms. Bernard certainly is with both organizations, but I wonder if she was attending as an Autism Speaks officer or if Autism Speaks was even aware that their name was being used to promote the fundraiser.

Perhaps Ms. Bernard wasn’t aware that her Autism Speaks affiliation was being used this way. I’ve seen some of my affiliations used where I didn’t expect nor want them. Perhaps Ms. Bernard was aware that the AS affiliation was being used in this advertisement, but Autism Speaks wasn’t. Perhaps Autism Speaks was aware and supported this effort. I’m not betting heavily on that last option though.

Here’s the list of donors for the fundraiser in the email I got:

Jennifer Larson of the Canary Party and Health Freedom
Sallie Bernard of Safeminds and Autism Speaks
JB Handley of Generation Rescue
Tony Lyons of Shy[sic] Horse Publishing
Barry Segal of Focus Autism
Mark Blaxill of the Canary Party and Health Freedom
Dr. Gary Kompothecras
Teri Costigan

The Autism Speaks name adds a legitimacy to this fundraiser that the other groups just can’t. The Canary Party and Health Freedom (which I assume to be Americans for Health Choice) are basically the same people with “Canary Party” as a political party and “heath freedom” as a charity. The Canary Party/Health Freedom team is led by the same people who funded large donations to Oversight & Government Reform Committee Chair Daryl Issa ($40k plus). JB Handley is not as vocal as he once was, but he founded Generation Rescue on the notion that “autism is just a misdiagnosis for mercury poisoning“. Sky Horse publishing is boutique publisher of many of the books on vaccines and autism, including “Age of Autism” and books by Andrew Wakefield. Barry Segal (Focus Autism) has been a large supporter of groups like Generation Rescue, the Age of Autism, SafeMinds and is very vocal on his belief that vaccines cause not only autism, but many other health problems as well. Gary Kompothecras has been funding Mr. Posey for years and is an autism parent and benefactor of groups promoting the vaccine/autism idea.

Without Autism Speaks’ name added to this, this would be very clearly all about a small but wealthy group of people pushing the failed ideas of vaccines and autism. People with failed and damaging ideas have the right to lobby members of congress along with everyone else. I, for one, am glad that the vast majority of Congress has moved on from the vaccine/autism-epidemic idea. I look forward to the day when that majority reaches 100%.


By Matt Carey

HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee

2 Jul

The U.S. Interagency Autism Coordinating Committee (IACC) will have two new members when it meets next week. The press release is below. The new members are Wendy Chung from Simons Foundation and Robert Ring from Autism Speaks. The Simons Foundation is the largest non-governmental funder of autism research and previously had a member on the IACC (Dennis Choi). My understanding is that Mr. Choi took a position working with a foreign government and that conflict required him to resign the IACC. Geri Dawson is still on the IACC and started this session working for Autism Speaks. Ms. Dawson has since left Autism Speaks.

For Immediate Release
July 2, 2014

HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee

The Department of Health and Human Services today announced the appointments of Wendy Chung, M.D., Ph.D., and Robert Ring, Ph.D., as public members of the Interagency Autism Coordinating Committee (IACC), a federal advisory Committee composed of federal agency officials and appointed community stakeholders that provides coordination and a forum for public input on issues related to autism spectrum disorder (ASD). Prior to her departure, former HHS Secretary Kathleen Sebelius appointed Dr. Chung, Director of Clinical Research for the Simons Foundation Autism Research Initiative (SFARI), and Dr. Ring, Chief Science Officer of Autism Speaks, to join the IACC in order to provide additional perspectives and expertise to the Committee. Dr. Chung and Dr. Ring serve as leaders within the two organizations that are the largest private funders of autism research in the United States. Both organizations were previously represented on the Committee by individuals who were appointed in 2012, but who have since left or changed affiliation.

Dr. Insel, Chair of the IACC and Director of the National Institute of Mental Health, welcomed the expertise and dedication that Dr. Chung and Dr. Ring bring to the IACC. “Both Dr. Ring and Dr. Chung will be important additions to the Committee, given the depth of their scientific and clinical experience, and their dedication to improving the lives of people on the autism spectrum,” he said.

Dr. Chung, in addition to directing clinical research at SFARI, served as a member of SFARI’s scientific advisory board. Dr. Chung is also the Herbert Irving Associate Professor of Pediatrics and Medicine and Director of Clinical Genetics at Columbia University College of Physicians and Surgeons, where she is the principal investigator for the Simons Variation in Individuals Project (Simons VIP), funded by the Simons Foundation.

Dr. Ring, who has been the Chief Science Officer of Autism Speaks since 2013, also serves as the Chairman of the Board of Delivering Scientific Innovation for Autism (DELSIA), the venture philanthropy arm of Autism Speaks, and leads Autism Speaks’ collaboration with the Simons Foundation to launch the Autism BrainNet, a privately-funded multisite brain banking effort focused on supporting autism research. Dr. Ring previously served as Autism Speaks’ Vice President of Translational Research. He holds adjunct faculty appointments in the Departments of Psychiatry at Mount Sinai School of Medicine and Pharmacology and Physiology at Drexel University College of Medicine. Prior to his work at Autism Speaks, Dr. Ring served as Senior Director and Head of the Autism Research Unit at Pfizer Worldwide Research and Development and worked in the area of psychiatric drug discovery at Wyeth Research.

These two new members of the Committee will serve for the remaining months of IACC activity under the Combating Autism Reauthorization Act of 2011, which will expire on September 30, 2014. If reauthorized, the IACC will be open for nominations of new potential public members in late 2014.


By Matt Carey

Embryo screening to reduce autism risk: it’s not in the future. It’s now

28 Dec

A news article on screening of embryos came out last week and it was picked up under various titles by various news outlets.

From Australia and New Zealand

Why IVF parents are choosing girls over boys, which google news also listed under Parents call for embryo screening to cut risks.

IVF parents choosing girls over boys

And a different take

Parents Worldwide Prefer Girls To Boys: Will India And China Learn?

From India

Why girls are preferred over boys by IVF parents

Here’s a quote from one of the stories:

Figures from one of Sydney’s top IVF clinics show about one in 20 parents seeking embryo screening are looking to have a female baby to reduce their risk of autism.

Australia does not allow for gender selection of embryos. One can’t tell the IVF team to pick male or female embryos. But one can ask for genetic screening.

University of Sydney senior lecturer in bioethics Chris Jordens said autism had a strong genetic basis, so it was within the guidelines.

And the trend towards genetic screening is strong and building in the US.

At a recent conference in Chicago, he saw a number of United States IVF providers offering parents without the conditions tests for between 180 and 600 common gene mutations, such as the BRCA ”breast cancer” genes.

Gender selection to reduce autism risk is about the most basic, the most crude, genetic screening one could imagine. But it’s real and it’s happening.

The concept of autism prevention through genetic screening, either in IVF or in selective abortions, has been a major ethical question with the push for genetics research in autism in the past decade.

The first step in guiding our societies towards an ethical approach to genetic testing is to present autism accurately. This is one reason why I and others speak out when groups such as Autism Speaks or some parent “advocates” present autism with phrases such as as “These families are not living” or “Life is lived…in despair”. Is life harder, more challenging for my kid? Absolutely. But what message are we sending to prospective parents when we tell them that their lives will be lived in despair or they will no longer be living if they have an autistic child? We are telling them to do whatever they can to avoid having an autistic child. We are telling them to pick and chose their embryos. We are telling them to selectively abort. We are telling the autistics of today that the perfect world (in the view of the majority) is one without them.

My kid and other autistics, children and adults, deserve life. They deserve the right to pursue happiness. Disabled does not equate to despair.

This is why, Autism Speaks, when you portray my kid as less, my life as not lived, I and others will speak out. Autism Speaks, it’s time you started listening.

By Matt Carey

My response to Mrs. Wright of Autism Speaks

20 Dec

As I recently wrote, Autism Speaks has once again shown it’s lack of respect for autistics and their parents with an opinion piece by Mrs. Suzanne Wright, co-founder of Autism Speaks.

I left the message below in response to Mrs. Wright’s piece.

I can not resign any position with Autism Speaks, as John Robison has done. I have been a member of one autism organization–a group which later became the local chapter for Autism Speaks. I resigned that group when they showed that they would waste their efforts lobbying against legislation that had nothing to do with autism. I’m glad I quit then.

One thing autism has taught me is that so many things we take for granted are gifts. It is a gift to have average or above intelligence. We don’t earn intelligence. It is our responsibility to use our gifts well.

Mrs. Wright, you aren’t using your gifts. After years with the autism community, you continue to speak for us as without understanding us. You aren’t using your gifts. My kid will never have the ability to understand the world like you can. Your gifts are squandered and that is a terrible shame.

I am doing more than “existing”. I am living. Is it harder with a disabled kid? Sure. It’s harder for him.

Use your gifts. Much more–use the gifts of those working for you. Learn how to frame the situation as being difficult, for that is what it is. But not as a life without hope. A life of despair.

I live. I love. I have joy. My son lives. Loves. Has joy. I have not lost touch with him. He has not lost touch with me.

It will be harder for him to enjoy life if the world sees him as less than a full person. It will be harder for him if we don’t put his needs first rather than mine. Please learn to put first the needs of the people we represent and advocate for.

If we in the autism community can’t put forth this message, how can we expect the rest of the world to do so?

Before we can craft a national plan we in the autism community must have a plan of our own. It must start with respect. Respect for autistics. Respect for families. And you are not showing that.

I saw the response Autism Speaks put forth in your home town newspaper in Florida. Please stop dodging this important question by framing it as “high functioning” adults vs. parents of “low functioning” children. Many of us who are parents of children with great challenges disagree with your stances. We’ve been telling you this for years. It’s time to listen.


By Matt Carey

Autism Speaks: it’s time to listen

18 Dec

I’ve always found the Autism Speaks motto ironic: “Autism Speaks. It’s time to listen.” Change he period to a colon and you get “Autism Speaks: it’s time to listen”. And, please, could you start listening, Autism Speaks?

Autism Speaks got off to a rocky start. Although they claimed an ” overwhelming positive response from the autism community”, the rollout of the organization was met with much criticism. Autism Speaks co-founder Suzanne Wright adhered to the “missing child” model of autism with phrases like: “It is as if he’d been kidnapped, or somehow had his mind and spirit locked in a dark hole deep within him”. She also had the parent-centric model of the autism community with phrases like “Such an effort must be driven by those with most at stake: the parents of autistic children.”

Shortly after their launch, Autism Speaks released a short film, Autism Every Day. While Autism Speaks told themselves and the world that the response was positive, in reality there was a great deal of negative reaction. (e.g. here, here, here, here, and more.)

It took years, but eventually Autism Speaks listened. The video disappeared from their website and YouTube channel.

Another video debacle came in the form of “I am autism” which depicted autism as a sinister monster stealing babies and ruining parent’s lives. Here’s the transcript in case you think I’m exaggerating. The video is now also removed.

Every now an then, I feel hope for Autism Speaks. There are some really excellent people at AS. AS took on the phrase “different, not less“. Sometimes a blog post comes by that I particularly like. And a lot of their research portfolio is quite good.

Then you get announcements like this one: Autism Speaks to Washington – A Call for Action. And we see that we are back to 2006. We are back to “I am autism” but this time it’s phrased “This is Autism”.

As a result of that opinion piece, John Elder Robison quit. He was one of the few (if not the only) autistics working in a high profile position with Autism Speaks. Here’s a section from his article, I resign my roles at Autism Speaks:

For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video. The most recent “Autism Speaks Point of View” http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.

I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support. There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.

A newspaper in Palm Beach, Florida (where the Wrights have a home) published the article: Autism Speaks post rattles some readers One board member resigns, saying he can’t stand by co-founder Suzanne Wright’s views. While they couldn’t get a comment from Mrs. Wright, they did get some statements from Autism Speaks itself.

Autism Speaks took the old cop out. Whenever there’s a discussion of whether a depiction of autism is demeaning, one can count on hearing the argument that the discussion is between parents of “severely” autistic kids and “high functioning” adults.

Michael Rosen, executive vice president of strategic communications at Autism Speaks, said Robison was the only one who resigned over the post. He said the organization understands that higher-functioning people with autism may have a different point of view about the issue.

“The people who are not sick, not unhappy, and are totally fulfilled and happy with their differences, we totally support them as well,” Rosen said. “We’re not looking to change anybody, we’re looking to support and get services for everyone who needs them.

“What that column had was a lot of empathy for those who are struggling the most. But for those who just need support and services, we work for them as well.”

Eight years ago Autism Speaks could pretend to be ignorant of the fact that much, a great deal in fact, of the criticism they get is from parents like me. Parents of children. Children who are “struggling the most”.

Then there’s the old “they see autism as a good thing” bit:

He said some people with autism feel it’s “a good thing” that just makes them “neurologically different. It’s a matter of diversity, and diversity is a good thing. We understand that and get that. They’re proud of their diversity and we salute them.”

Unless John Robison was VERY different at Autism Speaks meetings than the John Robison I’ve seen at IACC meetings, Mr. Rosen had no business saying what he did. Perhaps he could have read Mr. Robison’s resignation article:

I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.

Many autistic people are aware of this dichotomy. Some of us feel “totally disabled” and others feel “totally gifted.” Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment.

It’s so much easier to build the straw man that criticism comes from those who are “totally fulfilled and happy” than to face the criticism head on.

Doing a quick google search, I found these criticisms of Mrs. Wrights op-ed:

A Reporter’s Guide to the Autism Speaks Debacle
by Lucy Berrington, autistic adult

AWN SQUARES OFF WITH AUTISM SPEAKS OVER NATIONAL AUTISM PLAN
by the Autism Women’s Network

A Poem For Suzanne Wright. A Call To Action; A Call To Be. November 15, 2013
By Cheairs Graves, mother of an autistic child.

no more – a letter to suzanne wright
by Jess, mother of an autistic child.

The Price We Pay for Autism Speaks
by Heather Clark, mother to two autistic children

Why Autism Speaks Doesn’t Speak for Me
by Emily Willingham, mother of an autistic child.

And there’s more. I did run into a couple articles supporting Mrs. Wright too. But this isn’t about who has more articles, it’s about the fact that Autism Speaks chose to frame the discussion in a very simplistic and, frankly, insulting way. They dismiss the criticism and ignore the fact that much of it comes from parents. The people Autism Speaks claims to represent in this discussion.

Autism Speaks: it’s time to understand.


By Matt Carey

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