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Autism Speaks founder Bob Wright’s opinion is more important than science

24 Sep

Last year the Chief Science Officer of Autism Speaks made a simple and clear statement

“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.”

It was nice to finally see someone from Autism Speaks make a clear statement without a lot of equivocation and “leave the door open” language.

But what I think is nice and what Bob Wright, the founder of Autism Speaks, thinks is nice are two different things.  The Wright family is, at least, sympathetic to the idea that vaccines cause autism (and, in at least one case, very outspoken on the idea.)  So perhaps I should have been surprised when Autism Speaks put on their website Rob Ring’s statement together with a statement by Bob Wright.

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
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
Because why should we let the Chief Science Officer have the actual word on what Autism Speaks thinks about an issue of science?  Why let a clear statement stand alone when one can leave the door open with “Scientific research has not directly connected autism to vaccines.”
And that was sad.  A sad move by Autism Speaks.  A sad move by Bob Wright.
But I’ve already written about that.  Why bring it up again now?  Well, because a reader here alerted me to the fact that Bob Wright and Autism Speaks have expunged the statement by their science officer. If one now goes to https://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism, one finds only Bob Wright’s statement:
AS backpedals on vaccines
I so want Autism Speaks to be an organization I could support.  And sometimes they seem to be moving in that direction.  But, in the end, they are still clinging to ideas like “vaccines cause autism”, ideas that cause a lot of harm within the autism communities.  And they also take a very stigmatizing approach to the discussion of autism, but that is another discussion.

Autism Speaks pretends to be a science driven organization, but they just aren’t.  The founder is the founder and his opinion means more than the results of scientific studies as expressed by their own Chief Science Officer.

—
By Matt Carey

Tags: , ,

“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

Was Mark Roithmayr pushed out of Autism Speaks over vaccines?

1 Mar

Last June Autism Speaks suddenly announced that their president, Mark Roithmayr, was leaving and being replaced by Liz Feld. (Mr. Roithmayr is now Chief Development Officer at the Leukemia & Lymphoma Society) There was little information about why Mr. Roithmayr left. The suddenness and the lack of information given out for the departure of an executive pointed to there being much more going on behind the scenes. Things going on which Autism Speaks would prefer did not become public.

In reading up on the group Focus Autism, I found a past webpage of emails from the founder, Barry Segal. One of those is copied below:

Barry Segal’s email to Bob Wright June 21, 2012

Bob,

Good work on Mark. On June 1st, I sent an email to you as well as Peter Bell that stated, “I feel Mark Roithmayr is not an asset to Autism Speaks.” In three weeks he was gone. You acted faster than Warren Buffet. When I wrote him that his top three men at JM knew nothing about roofing, it took him 90 days to replace them.

Here’s the problem. The gist of it is that the government was not going to do the necessary environmental and vaccine research due to political restrictions of public money, but that did not mean that private sector organizations, like Autism Speaks, had to follow those restrictions, per Kevin Barry.

It doesn’t matter whether you have Liz Feld, Donald Trump or Alex Rodriguez on the board. Unless Bernie relents and lets Autism Speaks go after the vaccine involvement, nothing will be gained.

Barry

It appears clear to me from this email that Mr. Roithmayr was pushed out. If we take the email above at face value, Barry Segal (a large donor to Autism Speaks) wrote to Bob Wright (Founder of Autism Speaks) and Peter Bell (executive vice president for Autism Speaks), pushing for Mr. Roitmayr’s ouster. Mr. Segal has elsewhere indicated that both Bob Wright and Peter Bell want more work done on vaccines and autism.

Given the next two paragraphs of the email, it appears that Mr. Segal’s complaint about Mr. Roithmayr was, indeed, his stance on vaccines:

It doesn’t matter whether you have Liz Feld, Donald Trump or Alex Rodriguez on the board. Unless Bernie relents and lets Autism Speaks go after the vaccine involvement, nothing will be gained.

I read this to say that while pushing Mr. Roithmayr out was a step forward (in Mr. Segal’s view), that Bernie (I assume Marcus, of the Marcus Autism Center and Autism Speaks) is still in the way of the wish to push Autism Speaks further into pursuing vaccines.

Kevin Barry, on the other hand, is a former president of Generation Rescue (an organization which especially then was very vocal about vaccine causation) who went to work as a consultant for Autism Speaks in 2006. While at Autism Speaks, Mr. Barry was apparently using others to post his messages to discussion boards. In this case, a call was sent out on the “Evidence of Harm” board for people to give input to Autism Speaks on the “epimdemic ‘debate’ “:

Hi Heidi, Confidential. I am not allowed to comment on the Boards. Would you post this to the EOH board as if you can upon it yourself? It is a page where people can comment on the epidemic “debate”. It would not hurt if Autism Speaks heard more feedback from EOH parents. Thanks, Kevin

In 2009 Autism Speaks lost Eric London (founder of NAAR and member of the Autism Speaks Scientific Affairs Committee) largely due to difference over vaccines. Earlier in 2009, Autism Speaks’ executive vice president of communications and awareness, Alison Tepper Singer, resigned prior to an IACC meeting in which a vote was to take place on vaccine related research. “Knowing she might cast a vote with which Autism Speaks might disagree, she resigned from Autism Speaks prior to the meeting.” In the press release following her departure, Ms. Singer wrote:

“However, for some time I have had concerns about Autism Speaks’ policy on vaccine research. Dozens of credible scientific studies have exonerated vaccines as a cause of autism. I believe we must devote limited funding to more promising areas of autism research.”

The same day, Autism Speaks published a press release, Autism Speaks Withdraws Support for Strategic Plan for Autism Research, Decries Unexpected Change in Final Approval Process. Yes, Autism Speaks pulled it’s support for the Strategic Plan because it didn’t include vaccines. The press release included this statement from Bob Wright:

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

It appears that even though Autism Speaks has not made such strong statements about vaccine causation in the past few years, the sentiments remain strong within the organization. Strong enough apparently to push the president out.

If it is true that Mr. Roithmayr was pushed out over vaccines, this would mean that the fears of many are validated: that Autism Speaks has a public face adhering to the science of today, while inside they still have a strong faction, including the founders and executives, pushing for a focus on vaccines. And that there is no room for someone with an opposing view.

—
By Matt Carey

Is there a split in the autism-vaccine groups?

1 Mar

For people who watch the public discussion of autism and vaccines, organizations like Generation Rescue, SafeMinds, the National Autism Association and TACA (and others) come to mind. One less public organization is Focus Autism. Focus Autism is a private foundation. In other words, they don’t accept donations from people outside the foundation. Here are tax forms submitted by Focus Autism in 2010 and 2011:

2010 tax form 990
2011 tax form 990

In 2011, Focus Autism pulled in $1.7M, which makes it as big or bigger than most of the other groups named above. If you peruse their website, it is clear that they have promote the vaccine-epidemic idea. Their “about” statement is:

FOCUS AUTISM is dedicated to finding answers about autism causation, no matter how inconvenient it might be. We believe in accountability, transparency and above all, a sense of urgency.

Childhood vaccine policies must be carefully administered. We demand strict avoidance of neonatal vaccination and vaccination of vulnerable children.

We must hold leaders of government, corporations, and the medical establishment accountable for failures that have led to the autism epidemic.

Leaders in the field agree there is a subset of vulnerable children who are predisposed to vaccine-related injury. We want those children identified, so that we do not needlessly harm innocent children.

Millions of dollars have been funnelled into genetic research in a frantic search for the single gene or a small number of genes responsible for the autism epidemic. Emerging consensus rejects a purely genetic cause. Most experts now agree that the primary causes must be a combination of genetic and environmental factors.

They have funded a mix of projects and groups. In 2010, most projects were not vaccine-focused. In 2011 they funded: Autism Speaks ($51,000), the Marcus Autism Center ($50,000), projects in Africa and many other non-vaccine focused projects. In 2011, Focus Autism funded vaccine-oriented groups such as the National Vaccine Information Center ($37,500), SafeMinds ($70,000), Generation Rescue ($40,000).

In 2011, Focus Autism added to its board Louise Kuo Habakis and Katie Wright, both vocal proponents of the vaccine-causation idea. The board currently includes Brian Hooker, who is also a vocal proponent of the idea. There has been some discussion lately about Mr. Hooker’s involvement with the autism hearing held by the Committee on Government Oversight and Reform last year. The idea being presented that Mr. Hooker, lone citizen, made contact with members of congress and got the hearing moving.

Consider that Focus Autism was founded and is apparently run by Barry Segal. Mr. Segal’s family foundation has over $50M in assets, and seems to be doing a great deal of good work, especially in sub-saharan Africa. Mr. Segal’s company sold for an undisclosed amount, but had sales of $1.7B (yes B) in 2006.

Here is a picture from Facebook showing Mr. Hooker in the audience of the congressional hearing from Focus Autism’s facebook page. Sitting next to him is Mr. Segal’s wife, then Mr. Segal.

Hooker-Segal 2

I consider it possible he had a bit more support in his efforts than, say, I might have.

Focus Autism includes in its list of partners: Age of Autism, EBCALA, the National Vaccine Information Center, the Canary Party and the Dwoskin Family Foundation. All groups promoting the idea that vaccines cause autism.

As to the split mentioned in the title of this article, consider this short blog post on the Focus Autism website: The Fragmented Autism Community:

The so called autism community is represented by:

#1 Autism Speaks, which because of Bernie-Julie thing refuses to meaningfully go after environmental issues, especially vaccines.

#2 Safe Minds, another disaster and I don’t know (or care) what their agenda is.

The rest of the community is fragmented, acts like our congress, accomplishes nothing and has an approval rating similar to congress. In both cases we need to change.

“Bernie” is most likely Bernie Marcus, co-founder of Home Depot and founder of the Marcus Autism Center. I’m not sure who “Julie” refers to. SafeMinds, well that reference is clear. It is also interesting in that Focus Autism donated money to both the Marcus Autism Center and SafeMinds in 2011. Somewhere in the past couple of years, there seems to have been a falling out.

Given some of the current discussion about the way the congressional hearing was put together, specifically Mr. Hooker’s and SafeMinds’ roles (see here, here and here), it is interesting to see the organization he works with taking such a harsh stance on SafeMinds.

The name Barry Segal was familiar to me, and it took me a few days to recall where I saw it before. It was on a discussion at the Forbes website. I usually avoid bringing discussions held on other sites to this blog, but I think these statements show the possibility of further rifts, both between autism organizations and within organizations. Here are the statements made by Mr. Segal (or someone using his name, but I have no reason otherwise) at Forbes:

First this one (actually two, it was repeated):

I guess you are aware that in 1960, 3 years before the measles shot, 100 people died of measles. In 2012 over 80,000 of the babies born that year will end up on the spectrum. Bob Wright knows certain children are vulnerable to vaccines but Bernie Marcus won’t let him go there. Do you really give your child or grandchildren a Hep b shot at birth, or do you have them practice safe sex till they are 6 years old. (That is when the shot wears off)

Indicating his opinion that Bob Wright (founder of Autism Speaks) wants more vaccine research but that Bernie Marcus (Marcus Autism Center and Autism Speaks) is blocking it.

Mr. Segal went on:

I won’t discuss Hepatitis B with you except that the following five countries, Denmark, Sweden, France, Germany and Japan only give the Hepatitis B vaccination to children whose mothers test positive.

As far as Bob Wright, I have met with him and he shared with me, the following thoughts:
1.That there needs to be more vaccine research
2.That there should be no more thimerosal in any vaccines or medicines

I had dinner with Bernie Marcus in Florida. Towards dessert, I mentioned what Bob Wright had said and he told me, “There is no thimerosal in this country today,” to which I replied, “ You’ve got to be kidding me, you can go to your local drug store and get a shot of thimerosal in your flu injection.” He is clueless and after starting the Marcus Autism Center and hearing Bob Wright had an autistic grandchild, he reached out to Bob Wright to form Autism Speaks with the intent that they do not address the vaccine issue. Peter Bell and Holly Peete both have vaccine injured children and will not vaccinate their subsequent children as mandated.

And this:

I had breakfast with Peter Bell on 12/8/11. He explained to me that the increase in the vaccinations alters the immune system. When he lived in CA, he didn’t have to vaccinate his children (philosophical exemption is available in CA) but when he came to NJ, he slowed it down as much as possible. Peter suggested Tylenol could be part of the problem.

Rodney Peete said in his book, “NOT MY BOY!” co-authored by Danelle Morton:

“At home that night, R.J. had a terrible fever and started shaking violently, just short of something like a seizure. Holly called the pediatrician to ask him what could have caused this. Should we take R.J. to the hospital? The doctor was unruffled and told us it was not a reaction to the shots. He recommended that we give R.J. some Tylenol to help him with the fever and he promised that R.J. would be fine. R.J. had a terrible reaction to the Tylenol and we rushed him to the emergency room late that night. We believe he went into some kind of toxic overload shock. After that, we didn’t hear the words “Mommy” or “No” for about four years.”

As far as vaccine safety, the problem is much more than just thimerosol. Today, the autism incidence rate is 1 in 88 and this is for children born in 2000. If we apply a more conservative 8% growth rate to this rate, we’re looking at over 80,000 children born this year being on the spectrum!

In these two suggesting that Peter Bell (Autism Speaks), Holly Robinson Peete and her husband Rodney Peete (HollyRod foundation, Autism Speaks) are also proponents of the vaccine-causation idea.

All this again indicating tensions between and within autism orgs over the topic.

For anyone who thinks the vaccine-autism-epidemic idea is going away from the public discouse any time soon, keep in mind that this is not a grass roots movement. There are millions of dollars being spent by these groups every year. Much of it from wealthy donors.

Mr. Segal had some very interesting things to say about the departure from Autism Speaks of their previous president. That is discussed in Was Mark Roithmayr pushed out of Autism Speaks over vaccines?

—
By Matt Carey

Mr. Wright, is autism an epidemic or not? Why not give real examples of how to make a financial impact?

30 Nov

Bob Wright co-founded Autism Speaks and was their representative to the congressional hearing held yesterday. As part of that hearing, he called autism an “epidemic”, stating:

More than seven years have passed since my wife, Suzanne, and I founded Autism Speaks. During that time, we have seen the prevalence of autism in America nearly double – from 1 in 166 children in 2005 to 1 in 88 today, including 1 of every 54 boys. The prevalence of autism has increased by 1,000 percent over the last 40 years.

Mr. Wright’s testimony also included the statement: “The annual cost of autism in the United States is now estimated at $137 billion – a
figure that exceeds the gross domestic product of 139 countries.”

I tried to work out how Mr. Wright arrived at that figure and couldn’t easily get there. Why, you might ask? It’s nice to cross check: do figures someone assumes match the statements they are making. Luckily a recent interview makes it clearer how he came to these figures:

According to Wright, autism creates costs of $137 billion a year for the U.S., breaking down to $60,000 per year for family. Most of these costs are borne by the parents of the autistic child. Wright told Mitchell he’s “optimistic” after Thursday’s testimony but Congress needs “to have a plan” and “a will to execute it.”

Aside, more burden language. In my family, most of the difficulties with autism are lived by my kid, but I’ll move on. Partly because most of the “costs” in these estimates are incurred by adults.

A bit of quick math to see what autism prevalence Mr. Wright is assuming for autism in his calculation.

$137,000,000,000 cost total divided by 60,000 cost per family is 2,283,333 families. The US Population is currently estimated at 311,591,917. Combining these: 2,283,333 is 0.73% of 311,519,917. That would be an average of 0.73%, across all age groups. 1 in 136. Not so far from the 1 in 88 of the current autism prevalence estimate in the US for eight year olds.

But, wait, he didn’t say it that way. He didn’t say that it was $60,0000 per individual. He said “families”. Let’s take “households” as the estimate of how many families there are in the US: 114,235,996. 2,283,333 is 2% of 114,235,996. Average, across age groups. 2% of families/households have an autistic in them? It’s really the same figure as above (about 0.73%), but in another format. (in the original version of this article, I didn’t catch that fact).

So, Mr. Wright (or whoever in his staff produced these figures) is assuming an autism prevalence somewhere around 1 in 136 (0.73%). Which is pretty close to the current estimate of 1 in 88. Except that Mr. Wright’s figures appear to assume a flat prevalence over age. I.e. no epidemic. So, on the one hand we are told that autism rates are rising to make one scary point, on the other we are told autism costs a lot of money to make another scary point. But both statements are based on polar opposite assumptions. These were political and public relations statements, so it is almost expected that they won’t be self-consistent.

OK, let’s leave behind the “gotcha” phase of the article and re-analyze the statement more closely. He uses the figure of $3.2M as the lifetime cost of autism. That figure comes from this study: The lifetime distribution of the incremental societal costs of autism.

Taking just the results and conclusions of the abstract from that study:

RESULTS:
The lifetime per capita incremental societal cost of autism is $3.2 million. Lost productivity and adult care are the largest components of costs. The distribution of costs over the life span varies by cost category.

CONCLUSIONS:
Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood. The substantial costs resulting from adult care and lost productivity of both individuals with autism and their parents have important implications for those aging members of the baby boom generation approaching retirement, including large financial burdens affecting not only those families but also potentially society in general. These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood.

If one is going to discuss autism as a “societal cost” issue, one has to focus on where those costs are. The “low hanging fruit” of reducing societal costs are in “Lost productivity and adult care”. Productivity costs were calculated including:

Productivity losses for people with autism were estimated by combining standard average work-life expectancies for all men and women taken from the economics literature (ages 23-57 years for men and 23-53 years for women), 34 with average income and benefits (from Tables 696 and 628 of the Statistical Abstract of the United States36) and estimates of age- and sex-specific labor force participation rates

.

And a similar estimate assuming some amount of un and underemployment for the parents. But, even with the parental lost income assumed, the largest “costs” to society are for adults. Not really surprising as people spend much more of their lives as adults than as children. This begs many questions. I’ll start with: how much of this “cost” to society, right now, is being incurred because our adult autistics are un- and under-employed? Or to put it in a way to entice a member of Congress, how much money could the U.S. be saving, right now, if we did a better job supporting some fraction of the autism population into employment?

About 2/3 of the U.S. population is in the employable age range (18-65). That’s about 208 million Americans. Assume an autism prevalence of 1%. That’s 2.08 million Americans. Assume 1/10 of those are employable but unemployed. That would give about 208,000 Americans. Let’s take $30,000 per year as salary+benefits for these workers. That’s $6,240,000,000 ($6B) that could be realized if we could get this assumed fraction of autistics from unemployed to employed. Not including whatever is being paid out in unemployment or social security to this unemployed population.

One can quibble with the assumptions here, but we are talking big numbers here. The sort that should catch a legislator’s eye. For those who want to quibble with the idea that the autism prevalence is flat: hey, Bob Wright did it. More to the point, it’s probably correct to assume a relatively flat prevalence. And if you have real data to the contrary, you have data that is either unpublished (and I’d love to see it), incorrect or misinterpreted.

One reason to make this sort of calculation, i.e. focusing on autistics who can be employed, is that it is easy and direct. The math is simple. What about autistics who are not so close to employment, or not close at all? Autistics adults who are similar to my kid. How much do we save by investing in them? I would say a great deal. Each step helping a person move from a more restrictive adult support system to a more independent system will save money. Potentially lots of money. If that’s what congress needs to hear to be interested, fine. These are ways to make the financial impacts that should be attractive in Congress.

Rather than focus on the “costs”, I’d rather focus on what can make a person’s life better. Is the reward of a job merely the salary? I don’t think so. For those who experience even greater challenges, giving a person the ability to self-advocate to the point of not being an even bigger target is invaluable. It could stop problems like those discussed here recently.

—
By Matt Carey

Note, I made edits to this piece within the first 30 minutes of it being published.

Witnesses for Congressional hearing on autism announced

28 Nov

Thursday the US House Committee on Oversight & Government Reform will hold a hearing on autism: 1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism.

The witness list has been made public on the committee’s website:

Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institutes of Health

Coleen Boyle, Ph.D.
Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Mr. Bob Wright
Co-Founder
Autism Speaks

Mr. Scott Badesch
President
Autism Society

Mr. Mark Blaxill
Board Members
SafeMinds

Mr. Bradley McGarry
Coordinator of the Asperger Initiative at Mercyhurst
Mercyhurst University

Mr. Michael John Carley
Executive Director
Global & Regional Asperger Syndrome Partnership

Mr. Ari Ne’eman
President
Autistic Self Advocacy Network

Bob Wright snubs autistic adults, the same group who live in poverty

23 Nov

The New York Post reported on Autism Speaks founder Bob Wright having a grumpy slap at adult autistic people who were protesting the fact that Autism Speaks still has no autistic representation on its Board.

Bob Wright had harsh words for protesters who tried to muck up the A-list benefit concert he put on at Carnegie Hall on behalf of autistic kids.

“The protesters are lucky,” said Wright. “They’re well off enough, healthy enough, to do it. I wish my grandson were able to join them.”

Wright runs Autism Speaks, which has raised over $200 million for research into a disorder that afflicts mainly children.

That didn’t stop a clutch of sign-carrying adult protesters from descending on Carnegie Hall Tuesday night, trying to disrupt a concert attended by Donald Trump, Howard Stern and Martha Stewart. Protesters complain that there’s not one autistic person on the board of the org, which produced an “offensive” ad suggesting that autism was a fate worse than death.

Wright, whose grandson cannot talk because of autism, said the disorder is exploding among young kids who can’t speak for themselves.

“This is serious business,” he said.

Note how the reporter states that the benefit was for autistic kids and further states that autism affects mainly children. This should give some insight into the silly one dimensional world that the Wrights, and by extension, Autism Speaks inhabit. Of course autism doesn’t affect mainly children. In fact, it would seem that the reverse is true.

I would like to suggest to Bobo that what is serious business is blindly misrepresenting autism either purposefully or (more likely) out of ignorance. I would also like to suggest that its about time Autism Speaks walked the walk and got aome autistic Board level members. I would further suggest that Bobo wakes up and smells the coffee. Young autistic kids definitely find it difficult to talk for themselves. Most kids of his grandsons age might find it difficult to form coherent opinions on high level concepts like the right to be who you are. In the meantime, having an autistic Board level member would be a step in the right direction. I’d happily accept Jake Crosby or Jon Mitchell. Two men who I vehemntly disagree with yet who’s opinion on autism I respect due to their diagnosis.

Maybe Bobo might take a look across the pond if his cheeks aren’t still smarting from the slapdown he got last time he came over here. Maybe the reality of life for autistic adults over here might cause him to get a bit of a reality check as to where his research priorities should lie. As he continues to steer Autism Speaks down the increasingly stupid looking anti-vaxx hypotheses,

A THIRD of Wales’ autism sufferers are unemployed and living in ‘poverty’ without benefits, a charity has said.

9,000 autistic adults are surviving (sort of) on handouts from friends and family. Not only are they subject to ignorance in job centres, they are not made aware of _how_ to make a claim:

She [Shirley Parsley] said: “It is scandalous, therefore, that thousands of people with this serious, lifelong and disabling condition are being consigned to poverty by a complex and counter-productive benefits system.”

This is the reality of life for autistic adults. Abandoned by a state system and also abandoned by Autism Speaks, an organisation focussed solely it seems on people of Bob Wright’s grandchilds age. Whilst Bobo complains about how autism is ‘exploding amongst kids who can’t talk for themselves’ (a factoid for which there’s no valid science), the adults he and his organisation turn their backs on are literally starving.

Eric London resigns from Autism Speaks

7 Jul

Dr. Eric London has resigned from Autism Speaks. I read his resignation letter a while back, but I held off blogging it until I could confirm it was legitimate. This letter is taken from the Autism Science Foundation blog.

After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment, I regretfully and sadly must announce my dissociation from this organization, including resignation from the Scientific Affairs Committee.

Despite the very excellent work that Autism Speaks has done in the area of awareness and legal advocacy, there are many differences which I have with the organization, mostly concerning the direction and prioritization of the science program. There have been numerous decisions made which I believe have adversely impacted autism research and none of those decisions were made upon the advice of the Scientific Affairs Committee. The processes with which science decisions have been made have been contrary to my hopes and expectations when the NAAR-AS merger was effectuated.

If this were the only issue, I might have continued to try to work from within the organization to influence science policy and direction. However, the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert– that the parents need even further assurances and there might be rare cases of “biologically plausible” vaccine involvement –are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents’ doubts. By preferentially investing and advocating for the use of limited financial resources on the “biological plausibility” argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated. The lowering of the vaccination rate has already led to deaths. If Autism Speaks’ misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.

In my role as an Autism Speaks Scientific Affairs Committee member, I would be lending credibility to an organization whose scientific agenda and positions I can no longer ethically support. Please accept my resignation, effective immediately. If anyone would like to discuss this with me further, please do not hesitate to contact me.

Sincerely, Eric London MD

This is pretty harsh criticism of Autism Speaks, which has touted itself as a science-based organization taking direction from the research community. Instead, it appears that decisions are being made in direct opposition to their own Science Affairs Committee.

You may recall that when the IACC’s Strategic Plan was released, Autism Speaks pulled support (whatever that means) based on the lack of research into vaccines. No comment from Autism Speaks on lifespan issues, therapies or any other topic. Just vaccines.

The big question is whether Autism Speaks is just another Vaccines-Cause-Autism organization but hiding under a cloak of science. If so, they should let the donors know so they can take their money elsewhere.

IACC Plan has no vaccines, Alison Singer resigns from Autism Speaks

16 Jan

There was just no way I could listen in to the last IACC meeting. I have been keeping up with all the meetings, but yesterday it was not to be.

I knew it was going to be big, but it was way big. David Kirby tipped the hand when he blogged about how the Strategic Plan was going to include vaccine related research. Strange move–why blog about it before it was set in stone? Why not blog about it right after the December meeting when the language was discussed? A suspicious person would think that Mr. Kirby got wind that the vaccine language was in danger.

And, so it was. Here is a press release:

ALISON SINGER ANNOUNCES HER RESIGNATION AS EXECUTIVE VICE PRESIDENT OF AUTISM SPEAKS

Disagreement on Vaccine Research Prompts Departure

NEW YORK, NY (January 15, 2009) – Alison Tepper Singer, executive vice
president of communications and awareness for Autism Speaks, today
announced that she has resigned from her position with the advocacy
organization, effective next month.

“It has been an honor and a pleasure to help to build this
organization into the preeminent autism advocacy group — the group
that has, in fact, elevated the word “autism” to the global
vocabulary,” said Singer. “I am grateful to Autism Speaks founders Bob
and Suzanne Wright for their leadership, insight, commitment and for
the tremendous support and love they have shown to my family and me.”

“However, for some time I have had concerns about Autism Speaks’
policy on vaccine research. Dozens of credible scientific studies have
exonerated vaccines as a cause of autism. I believe we must devote
limited funding to more promising areas of autism research.”

Singer resigned prior to the January 14th Interagency Autism
Coordinating Committee (IACC) meeting, at which the discussion of
vaccine research was to be continued from the December meeting, at the
request of one of the public members. Knowing she might cast a vote
with which Autism Speaks might disagree, she resigned from Autism
Speaks prior to the meeting. Singer serves as a public member of the
IACC and will continue to serve until 2011. She was appointed to the
IACC by outgoing HHS Secretary Michael Leavitt in 2007.

The IACC, created via the Combating Autism Act of 2006, is responsible
for coordinating all efforts within the Department of Health and Human
Services (HHS) concerning autism spectrum disorder, including drafting
a Strategic Plan for autism research with budgetary requirements. At
the January meeing, the IACC voted to seek input on two proposed
studies of vaccines and autism from the National Vaccine Advisory
Committee Safey Working Group (NVAC), an HHS group specifically
charged with undertaking and coordinating scientific review of the
federal vaccine safety system, prior to including the proposals as
specific objectives in the strategic plan. Singer voted in favor of
this motion.

Singer was the first professional hired by Autism Speaks when it
launched in 2005. She served as interim CEO for three months, then as
senior vice president and later as executive vice president. She also
served as a staff member of the board of directors until her
resignation. Singer has been responsible for directing the
organization’s award-winning awareness and strategic communications
programs, including its work with the Ad Council which was awarded
aprestigious “Effie” award in 2008 in recognition of the 43 percent
increase in overall autism awareness directly attributable to the
campaign. She also serves on the Executive Committee of the YaleChild
Study Center and on the board of directors of Autism Spectrum News, as
well as on numerous state and local autism advocacy committees. She
has appeared on Oprah, The Apprentice, NBC Nightly News, Good Morning
America, CBS Early Show and numerous other news programs discussing
autism issues.

“My work with Autism Speaks and within the advocacy community has been
exceptionally rewarding, and I will continue to advocate on behalf of
my daughter, my brother and the millions of others affected by autism
spectrum disorder,” said Singer.

Autism Speaks has its own press release.

NEW YORK, NY (January 15, 2009) – Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December — would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

IACC met yesterday at the NIMH in Bethesda, MD, to finalize the Strategic Plan. As mandated by the Combating Autism Act of 2006, IACC must develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder (ASD) research, including proposed budgetary requirements.

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

Five of the six public members voted against this revision. Autism Speaks Executive Vice President Alison Tepper Singer was the sole public member to cast a vote in support. The evening prior to the vote, Singer submitted her resignation to Autism Speaks – which was accepted – based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks’ position on this issue. Thus, in casting votes on January 14, she was acting as an individual public member of IACC and no longer as a representative of Autism Speaks.

“We are hopeful that the new administration will fulfill the intent of the Combating Autism Act and truly value and respect the input of the autism community,” added Wright. “It is imperative that we move forward and ensure that there is a Strategic Plan that meets the needs of the autism community. Autism Speaks is committed to being part of that process.”

Wow.

I have to point out something rather odd in the Autism Speaks version. Note that they claim

“The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December — would be revisited”

This is given as the reason why they are withdrawing their support for the Plan, by the way.

Why point this out? How did Alison Singer know the night before to resign if there was no forewarning? How did Autism Speaks accept the resignation if there was no forewarning? And, in the speculation realm, why did David Kirby blog about the vaccine provisions if there was no idea that those provisions were in danger? As I noted above, the natural time to blog it was right after the December IACC meeting, but he delayed for some time. Come on, Autism Speaks. Admit it, you are pulling support because you wanted vaccine language, not because this was a surprise.

It took guts to do what Ms. Singer did. I know I can expect comments pointing back to the Autism Speaks video that Ms. Singer participated in, but I’d like to stress: it took a lot of guts to do what she did.

Oh yeah, Autism Speaks: You don’t speak for the “autism community” any more than Generation Rescue does. You certainly don’t speak for me on this issue.

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Autism Speaks endorsed by the United Nations

22 Dec

Its no secret that whilst there are many supporters in the US of Autism Speaks, there are equally as many who are not that keen in both the US and the rest of the world.

I’m of the ‘not that keen’ persuasion personally. I think their history of attempting to silence that voices of autistic people in the name of ‘protecting their brand’ is pretty awful. I think their film ‘Autism Every Day’ in which they set out to portray autism as an unrelenting nightmare for parents – to the extent that they appeared to cast a sympathetic eye on the murder of autistic kids – was about as bad and anti-advocacy as it can get.

I think the owners of Autism Speaks – Bob and Suzanne Wright – are ignorant of the needs of that which they seek to build – a true community of autistic people.

I think the fact that no autistic people serve on the board of Autism Speaks makes a mockery of their very name and very aims. How can you be called Autism Speaks when in fact, _no_ autistic people can speak under your regime? Their press release says they want to:

…promote the dignity, equal rights, social progress and better standards of life for individuals with autism…

Really? Here’s an idea. If you want to promote dignity, then treat autistic people with dignity – don’t assume to speak _for_ them. If you want to promote equal rights, then _give_ autistic people equal rights. Give them a position of power within your organisation from which to speak. These are the kinds of things which will _contribute_ to a better standard of life.

I find it incredible that Autism Speaks are so cynically paying lip service to any number of ideals that seem to establish them as a valid autism organisation. I have no idea what their end goal is and I have no real idea why they are going about this in such a way.

However, I want to publicly state that I have no real confidence in the Autism Speaks that the Wrights have control of. I respect the AS stance on science by and large but that is just one aspect. I have no respect for the way the Wrights comport themselves as advocates for autism and I feel strongly that all they do is pay lip service to lofty sounding ideals which will help them get what they want. I think the UN have made a bad choice here and want to bring this matter to the attention of the many of us (biomedders and ND’s – this is one issue we largely agree on) that view AS with suspicion.

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