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Autism Speaks: Top Ten Autism Research Achievements of 2011

5 Jan

Autism Speaks has a list of Top Ten Autism Research Achievements of 2011. Here is their list (which they state is not in an order of importance) with links to their articles discussing them:

It’s More than Just Genes…
Population Screening Reveals Dramatically Higher Autism Rates…
Baby Siblings at Risk…
De Novo Genetic Changes Provide New Clues for Autism…
Different Forms of Autism Share Striking Brain Similarities…
Prenatal Vitamins Before and After Conception May Decrease Autism Risk…
Gene Knockout Mouse May Offer Leap Forward in Autism Animal Models…
Tweaking Electrical Activity in the Brain Impairs & Restores Mouse Social Behaviors…
More Evidence Linking Immune System to Some Forms of Autism…
Earlier Autism Screening Shows Promise…

The Autism Speaks Book List

29 Aug

I want to like Autism Speaks. I really do. I know some very good people working with Autism Speaks. From a very practical standpoint, they are one of the biggest autism organizations and I need them to be doing good.

Unfortunately, sometimes Autism Speaks does things which I really find difficult to support. Recently, I pointed out that Autism Speaks is sponsoring a conference by the National Autism Association. This conference will be hosting Andrew Wakefield to speak. In my view, Mr. Wakefield is a person whose damage to the autism communities can not (and should not) be minimized. Even though Autism Speaks isn’t directly hosting Mr. Wakefield, I feel that it would be good and appropriate to withhold sponsorship of such an event.

During the discussion of that article I decided to search for how Autism Speaks discusses Mr. Wakefield on their website. The Autism Speaks website is a resource for many families looking for information. I found that Autism Speaks has a book list in their Resource Library (Family Services » Resource Library » Books) and this list includes “Callous Disregard: Autism and Vaccines – The Truth Behind a Tragedy”, Mr. Wakefield’s account of the events surrounding the loss of his medical license.

Frankly, I find this a poor resource for autistics, families, well anyone looking for accurate and useful information. Shannon Rosa did what I should have done and contacted Autism Speaks for comment and reported the response the comments here.

Kim, you are awesome. And I agree, working towards real change is hard; it requires a lot of processing power, a lot of reflection, a lot of synthesis, a lot of perseverance—and an eye on long-term as well as short-term goals.

Re: listing Callous Disregard, Autism Speaks pointed me to their resources section’s legal disclaimer:

“Autism Speaks maintains the Family Services Resource Guide as a service to families as a reference tool. Every effort is made to ensure listings are up-to-date. Autism Speaks does not endorse or claim to have personal knowledge of the abilities of those listed. The resources listed on this page are not intended as a recommendation, referral, or endorsement of any resource or as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. Users are urged to use independent judgment and request references when considering any resource associated with diagnosis or treatment of autism, or the provision of services related to autism.”

But I still think including Callous Disregard reflects badly upon them, and have said so. The conversation continues.

Since that time two small changes have occurred to that page. First, a disclaimer was added (it wasn’t there before, as the Google cache version confirms). The disclaimer:

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on this website is not a recommendation, referral, or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal, or educational professionals. Autism Speaks has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to autism.

I agree…to a point. Autism Speaks can’t be responsible for everything said in every resource. However, Mr. Wakefield was found guilty of dishonesty and unethical behavior in his research activities involving autistics. Even if one believes Mr. Wakefield’s account (which is clearly contradicted by the facts), it doesn’t give any real information of value to, say, a family with a new diagnosis. Autism Speaks can and does make a distinction of what books to host. You won’t find “The Empty Fortress” by Bruno Bettleheim on the list (surprisingly enough, it is still in print).

The second change to the Autism Speaks books resource page? The link has been removed to “Callous Disregard”. The book is still listed, but there is no link to the publisher’s site any longer.

The vaccine-autism notion has caused a great deal of harm to the autism communities. So much time and money has been thrown at researching the supposed epidemic of vaccine-induced autism. Much more to the point for an organization like Autism Speaks: this idea has caused a great deal of harm to families, a great deal of pain and, most importantly, a great deal of unwarranted and sometimes dangerous medicine to be practiced on autistics. This is why I would go further than to question why Autism Speaks lists a book by someone proven dishonest and unethical. I would ask why continue to give support to ideas whose time has clearly passed.

For example:

Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy
by David Kirby

David Kirby’s book was speculative at best when written. It is now very clearly false. Thimerosal did not cause an autism epidemic. And why list this under the subheading “Medical, Biomedical, Diet Interventions”? Mr. Kirby isn’t anything close to a medical professional and the book is more of a speculative thiller involving conspiracies which didn’t occur to cover up a mercury-induced epidemic that didn’t happen. Here’s the blurb for Evidence of harm:

Evidence of Harm explores the heated controversy over what many parents, physicians, public officials, and educators have called an “epidemic” of afflicted children. Following several families, David Kirby traces their struggle to understand how and why their once-healthy kids rapidly descended into silence or disturbed behavior, often accompanied by severe physical illness. Alarmed by the levels of mercury in the vaccine schedule, these families sought answers from their doctors, from science, from pharmaceutical companies that manufacture vaccines, and finally from the Center for Disease Control and the Food and Drug Administration-to no avail. But as they dug deeper, the families also found powerful allies in Congress and in the small community of physicians and researchers who believe that the rise of autism and other disorders is linked to toxic levels of mercury that accumulate in the systems of some children.

An important and troubling book, Evidence of Harm reveals both the public and unsung obstacles faced by desperate families who have been opposed by the combined power of the federal government, health agencies, and pharmaceutical giants. From closed meetings of the FDA, CDC, and drug companies, to the mysterious rider inserted into the 2002 Homeland Security Bill that would bar thimerosal litigation, to open hearings held by Congress, this book shows a medical establishment determined to deny “evidence of harm” that might be connected with thimerosal and mercury in vaccines. In the end, as research is beginning to demonstrate, the questions raised by these families have significant implications for all children, and for those entrusted to oversee our national health.

Other books of a questionable nature:

What Your Doctor May Not Tell You About(TM) Children’s Vaccinations
by Stephanie Cave

This is a book which links vaccines to autism using, for example, the incorrect comparison of mercury poisoning symptoms to autism, and gives the Wakefield (called “One of the most prominent researchers in MMR vaccine research) hypothesis for MMR causing autism.

Another example from the Autism Speaks book list:

The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic
by Dan Olmsted, Mark Blaxill

This is another in the series of books making the link between autism and mercury. On the one hand, it is nice for Autism Speaks to host a link to a book by people who are such harsh critics of Autism Speaks. But, why be polite when the book is a failed hypothesis wrapped in a bad understanding of science?

Another book:

Vaccine Epidemic: How Corporate Greed, Biased Science, and Coercive Government Threaten Our Human Rights, Our Health, and Our Children
edited by Louise Kuo Habakus, MA, and Mary Holland, JD

Amongst other topics discussed, this book includes a chapter which is basically a summary of “Callous Disregard”. I know this is getting repetitive, but Autism Speaks could do families a service by steering them away from this.

The book list is long. No one will agree with all the books listed as being accurate and valuable. I have no problem with that. I do feel that some level of screening is being done and more should be done. A new family deserves better than to waste their time, money and emotions on the failed ideologies of the past decade. They are, after all, trying to perform a service with this book list. I am only asking that they follow through on the spirit of this. Perform a service. Pointing them at sources of misinformation is no service. Disclaimers don’t change that.

Why is Autism Speaks sponsoring a conference featuring Andrew Wakefield?

18 Aug

It’s no secret that the National Autism Association is a staunch supporter of Andrew Wakefield. Mr. Wakefield, of course, is the researcher whose work on MMR and autistic children promoted the vaccine/autism link. Mr. Wakefield’s work was fraught with ethical lapses and research fraud. In short, from my perspective, Mr. Wakefield may rank as the person who has caused the most harm within the autism communities in recent decades.

Check the speaker list for the upcoming NAA conference. I’ll draw your attention to two points. First, Andrew Wakefield is scheduled to speak. Second, Autism Speaks is listed as a sponsor of the conference, sharing space with an HBOT company and a mail-order medical laboratory.

Mr. Wakefield is scheduled to speak about his next book. He has been involved with a family in Arizona who are battling child protective services. Here is the blurb on his upcoming talk:

Hoping for Perpetual Sunshine

This presentation is the subject of a new book coming out the spring of 2012. It deals with the hazards of pursuing a diagnosis of Munchausen Syndrome by Proxy (MSBP) in children with an Autistic Spectrum Disorder (ASD), particularly those with gastrointestinal (GI) disease and/or dysfunction. Specifically, it reviews the symptomatic presentation of GI disorders and, the frequency and nature of GI disease in affected children. It discusses the history of MSBP and briefly reviews alleged cases involving “factitious” GI symptoms. The main part of the talk will describe the experience of one family, deconstructing the evidence against the parents and their alleged fabrication of their children’s health issues, in order to identify not only the shortcomings of the diagnosis itself, but also the systematic problems that arise out of institutionalized ignorance. Deficiencies on the part of Social Services, Child Protective Services, the judiciary, and the medical profession, are identified and analyzed in respect of the published science on the presentation, pathogenesis, and treatment of autism.

Autism Speaks has a choice in where to spend their money and where to spend their reputation. Sponsoring a conference which brings Andrew Wakefield to speak to a segment of the autism community is not a wise choice, in my opinion.

Why are some autism groups silent on the Combating Autism Reauthorization Act?

29 May

Last week, the Combating Autism Reathorization Act was introduced into the U.S. legislature last week. Many organizations were ready with quick responses: the Autism Science Foundation, ASAN, and Autism Speaks to name a few.

How about the organizations which promote the idea that autism is a vaccine injury? Organizations like Generation Rescue, the National Autism Association and SafeMinds, and Talk About Curing Autism?

A quick survey of their websites shows nothing. Nothing on the front pages that I can see. Nothing on their news pages. If I’ve missed it, let me know.

Sure, you can find great information on their sites. Like “Vaccine Injury/Autism Study, A Federal Cover-Up?” or how to buy compounded drugs or sunglasses. Or “Jenny McCarthy” in big letters. But on a key piece of legislation comes through and there’s essentially silence.

Just an observation.

Interviews from IMFAR: Alex Plank brings the conference to the public

18 May

One of the unexpected joys of attending the IMFAR conference this year was meeting Alex Plank of Wrong Planet. I plan on writing more about Alex soon, but for the moment, let me bring you some of the interviews he did. His team is the same one that brought us the press conference. That was no small effort. They were up most of the night getting that out so fast. As you will see, Alex takes videography very seriously. As such, I would recommend playing these full screen or going to YouTube and playing them in a larger format that is afforded by out column size. It’s quality work. I love the way he’s working with various locations in these interviews.

John Robison at Imfar

David Mandell at IMFAR 2011

Clara Lajonchere, VP of Clinical Programs at IMFAR

Peter Bell of Autism Speaks – IMFAR Interview in San Diego

Geraldine Dawson Interview

IAN Network Launches Critical Survey on Autism & Wandering

6 Apr

I received the following message from the Autism Science Foundation. The message discusses the survey to collect data on wandering by autistics. To participate, you need to register at the IAN Project website.

Today, the Interactive Autism Network (IAN) with support from leading autism advocacy groups including the Autism Science Foundation, launched the first major survey to study the experience of wandering and elopement, or escaping, among individuals with autism spectrum disorders (ASD). The tendency of individuals with ASD to wander or “bolt” puts them at risk of trauma, injury or even death, yet information on this critical safety issue is lacking.

Since 2007, the IAN Project, www.ianproject.org, has connected thousands of individuals on the autism spectrum and their families with researchers nationwide to accelerate the pace of autism research through an innovative online initiative housed at the Kennedy Krieger Institute in Baltimore, Maryland. With more than 36,000 participants today, the IAN Project has the largest pool of autism data in the world.

“Although similar behavior has been studied in Alzheimer’s disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD,” said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute. “The new survey will provide vital information to families, advocates and policy makers alike as they work to keep individuals with ASD safe.”

The survey will help researchers begin to answer important questions:

* How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
* Which individuals with ASD are most at risk? At what age?
* What burden do efforts to thwart elopement behavior place on caregivers?
* What can be done to protect individuals with ASD and support their families?

To understand elopement and wandering behavior in ASD, researchers need information both from families of individuals who do and do not wander and elope. In order to determine who is at risk, all families in the U.S. autism community are encouraged to participate in the survey, whether or not their loved one engages in these behaviors. Survey participants must be enrolled in the IAN Project (to register, visit www.ianresearch.org) and be the parent or guardian of a child or dependent adult with ASD.

Due to the urgent need for this information by the autism community, preliminary data will be made available on April 20, 2011, provided the necessary sample size is reached for the research survey.

This survey is funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks and Global Autism Collaboration. The IAN Project is also supported by the Simons Foundation and the National Institutes of Health.

Perusing the IRS form 990’s for some autism organizations

18 Mar

How big are more outspoken autism organizations? How much do they support research? How much do they pay their executives? This became a big question about a year ago when it became public how much Autism Speaks pays their top people. Since the 2009 form 990 (IRS forms from non-profit organizations) are now public, I thought I’d take a quick look at some of the organizations out there. More importantly, we are in a tough financial time and charities get hit hard in recessions.

Autism Speaks

revenue: $45.5M down from $66.4M
Expenses: $43.6M down from $73.1M
Assets: $10.8M up from 8.9M

30 people listed as officers/directors.
14 people listed with salaries >$100k

Total salaries paid–$16.5M

Program services expenses:
$17,362,551 in research
$10,238,612 in awareness
$814,016 grants to families
$2,276,703 in other program service expenses

ratio of salary to program service expenses $16.5M/$30.7M=0.53

For those who want to know, Geraldine Dawson’s salary is $409,382. Very high, but also not as high as was reported last year. The previous year included many one-time expenses involved with her move to Autism Speaks.

Generation Rescue:

revenue: $641K down from $1,190k
expenses: $843k up from $745K
net assets $213k down from $445k

Salaries:
Stan Kurtz is now listed as “former” president. Salary: $129,167
Candace MacDonald: $100,000 in salary. Listed as president.

They spend about $19k on their website/year
biggest single expense (other than salary) is marketing, at $169k.

they list an expense of $729,340 for “GENERATION RESCUE PROVIDES EDUCATION, MEDICAL ASSISTANCE AND TREATMENT FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS, DIRECTLY IMPROVING THE CHILD’S QUALITY OF LIFE FOR ALL FAMILIES IN NEED”

They spent $23k on research.

ratio of salary to program expenses: 364,686/729,340=0.50

The ratio of salary to program expenses is basically the same as for Autism Speaks.

National Autism Association (NAA)

revenue: $542K down from $595k
expenses: $696k up from $570K
net assets: $62K down from $216

no salaries for organization officers listed

15 people listed as officers/etc. (including Katie Wright, Dierdre Imus)

expenses:
$434k in “building a solid foundation” for the NAA. Public awareness, etc.
$75k in crisis support–direct support to families in case of disasters, deaths, etc.

ratio of salary to program service expenses: 134,511/509,232=0.26

The ratio of salary to program services is much lower than for Generation Rescue or Autism Speaks.

SafeMinds

revenue: $196K down from $24k
expenses: $126k down from $179K
net assets: $187K up from $117k

no salaries for organization officers listed
14 people listed as officers/members

Expenses
$41K in research
$31k in website/PR
$23k for conferences
$15k to the Age of Autism
$29k to Thoughtful house

ratio of salary to program service expenses: 0/96,016=0.0

This is the only group with a zero ratio.

TACA (Talk About Curing Autism)

revenue: $841K up from $780k
expenses: $912k up from $847k
net assets: $477K down from $532k

4 people listed as board members/etc
One compensated, at $44k/year

expenses
$349,565. Meetings/conferences/seminars for parent education
$135,753. Print and electronic publications
$99,472. direct financial support to families

ratio of salary to program service expenses: 320,442/586,12 4=0.55

This is similar to Autism Speaks and Generation Rescue.

Checking a few figures.

First, it was claimed a while back that the National Autism Association had thousands of dues paying members. The lowest dues level for the NAA is $35/year. The amount of dues collected was $12,465. This suggests a maximum of 356 dues paying members.

Second, the $15k payment to the Age of Autism intrigued me. Age of Autism portrays itself as an autism organization in advocacy efforts. They are not, however, a charitable organization. The Age of Autism is a limited liability corporation registered to Dan Olmsted. Because of this, financial records are not public. But we can attempt an estimate with public information:

Age of Autism has 4 sponsors listed on their website. (SafeMinds, Generation Rescue, the National Autism Association and TACA). Assuming that all 4 are paying $15k per year, this would mean $60k/year from sponsors. In addition, they received advertising revenue. A link on the top of the Age of Autism blog takes you to where you can see advertising rates. AoA has two types of ads, leaderboard ads (at $10/day) and sidebar ads (varying from $25/week with no image to $250/week for a large ad with picture). They have no leaderboard right now, but 6 sidebar ads. Using an estimate average of $210/week based on the sizes I see (and the fact that this divides easily by 7), that gives $30/day per sidebar. I am assuming that the ads for the books are gratis. If they fill the leaderboard ad, AoA could be getting $190/day from advertisements. 365 days of that gives $69,350. Together with sponsorship, the Age of Autism is bringing in an estimated $129,350 a year. They have to pay for hosting, but they also get donations. They do not specify how the money is distributed.

Finding common ground at the IACC

1 May

The Interagency Autism Coordinating Committee (IACC) met Friday. New members were introduced, including Ari Ne’eman of the Autistic Self Advocacy Network.

The autism communities are far from unanimous in goals and methods. Given the makeup of the IACC, consisting as it does of governmental agencies plus public members of organizations that have been highly critical of each other, one might wonder if it anything could get accomplished.

But, in the end, most groups have more than a single goal. And, if you remember back to your set theory lessons, that leads to intersections–overlap–common ground.

I was reminded of this watching the IACC meeting. I could only watch bits and pieces during the day. One standout part of the morning came when Jim Moody of the National Autism Association gave a public comment talking about issues of safety, elopement, drownings–preventable deaths of autistics young and old.

Towards the end of the meeting I listened to a number of people refer back to this presentation. Amongst these commenters was Ari Ne’eman. Mr. Ne’eman obviously took the idea seriously and was calling for serious consideration of how this could be implemented into the Strategic Plan, calling for input from the services subcommittee.

I know the idea of safety are not new to Mr. Ne’eman. I contacted him recently when I was preparing a piece, Search and Rescue and autistics.

The members of the IACC span a wide diversity of ideas and viewpoints. Diversity, that’s a good thing.

But, working together for the common good: that’s common ground. Ideas that span diverse organizations and viewpoints. That is a very good thing.

Interagency Autism Coordinating Committee welcomes new members

30 Apr

The Interagency Autism Coordinating Committee (IACC) is a U.S. government committee which oversees autism research activities of the various U.S. agencies. The committee is made up of a representatives of those agencies plus members of the public.

The current public members are:

Lee Grossman
President and CEO
Autism Society

Yvette M. Janvier, M.D.
Medical Director
Children’s Specialized Hospital

Christine M. McKee, J.D.

Lyn Redwood, R.N., M.S.N.
Co-Founder and Vice President
Coalition for SafeMinds

Stephen M. Shore, Ed.D.
Executive Director
Autism Spectrum Consulting

Alison Tepper Singer, M.B.A.
President
Autism Science Foundation

Here is the announcement for the new members

Secretary Sebelius Announces New Members of the Interagency Autism Coordinating Committee

Health and Human Services Secretary Kathleen Sebelius announced today the appointment of five new members to the Interagency Autism Coordinating Committee (IACC), a federal advisory committee created in an effort to accelerate progress in autism spectrum disorder (ASD) research and services.

The committee is composed of a diverse group of federal officials from HHS agencies and the Department of Education, as well as public members that include people with ASD, parents of people with ASD, and leaders of national ASD advocacy and research organizations.

In January 2009, the IACC released its first strategic plan for autism research. The IACC released a second edition of its strategic plan in January 2010.

“Today I am pleased to announce new members of the IACC, who will bring additional points of view and expertise to the committee,” Secretary Sebelius said. “I look forward to hearing from the committee members on important matters that affect people with autism and their families as we continue our efforts to address this urgent public health challenge.”

ASDs are a group of developmental disabilities that cause major social, communication and behavioral challenges with symptoms that present before age 3. ASDs affect each person in different ways and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. The Centers for Disease Control and Prevention estimates that an average of 1 in every 110 children in the United States has some form of ASD.

For more information on the IACC, visit http://www.iacc.hhs.gov/

New Members of the Interagency Autism Coordinating Committee

Geraldine Dawson, Ph.D.
As chief science officer for Autism Speaks, Dr. Dawson works with the scientific community and stakeholders to shape and expand the foundation’s scientific vision. She also is a licensed clinical psychologist with a research focus on early detection and intervention, early patterns of brain dysfunction and the identification of biological markers for autism genetic studies. Dr. Dawson also serves as research professor of psychiatry at the University of North Carolina at Chapel Hill, adjunct professor of psychiatry at Columbia University and professor emeritus of psychology at University of Washington.

Gerald D. Fischbach, M.D.
Dr. Fischbach is the scientific director for the Simons Foundation where he oversees the Autism Research Initiative. He has spent his career as a neuroscientist studying the formation and maintenance of synapses, the junctions between nerve cells which allow signals to be transmitted. Before joining the Simons Foundation, Dr. Fischbach served as the Director of the National Institute of Neurological Disorders and Stroke from 1998 to 2001 and as the Executive Vice President of Columbia University Medical Center and Dean of the faculties of medicine from 2001 to 2006.

Ari Ne’eman
Mr. Ari Ne’eman is the founding president of the Autistic Self Advocacy Network, where he works to increase the representation of autistic people in public policy discussions. He is an adult on the autism spectrum and a leading advocate in the neurodiversity movement. Mr. Ne’eman has served on the New Jersey Adults with Autism Task Force and the New Jersey Special Education Review Commission, where he authored a minority report advocating legislative action against the use of aversives, restraint and seclusion. He is a board member of TASH, an advocacy group for people with disabilities, and is involved with the Maryland Coalition for Inclusive Education.

Denise D. Resnik
Denise Resnik is the co-founder and board development chair of the Southwest Autism Research & Resource Center (SARRC). She is the mother of an 18-year-old son with autism. Ms. Resnik serves on the Autism Speaks Family Services Committee and Advancing Futures for Adults with Autism (AFAA) Steering Committee. She participated in the 2006 NIMH Autism Matrix Review and the IACC Scientific Workshops to develop the IACC Strategic Plan and subsequent updates.

Marjorie Solomon, Ph.D.
Assistant professor of Clinical Psychiatry at the University of California, Davis

Dr. Marjorie Solomon is an Assistant Professor of Clinical Psychiatry in the Department of Psychiatry and Behavioral Sciences at the University of California, Davis. She serves on the Faculty of the Medical Investigation of Neurological Disorders (MIND) Institute and the Autism Research Training Program where she conducts research on a social skills training intervention for high-functioning children with ASD, incorporating parents and siblings in the research. In addition to her clinical research work, Dr. Solomon studies cognition and learning in high-functioning individuals with ASD.

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.

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