No, Dr. “Bob” Sears, you don’t represent the autistic children of California

15 Apr

I’ve been told that testifying before the California Legislature today, Robert “Dr. Bob” Sears, stated either exactly or words to the effect of, “On behalf of 79,000 children with autism in California schools I strongly oppose this bill”.

No Bob, you don’t speak on behalf of the autistics in California, be they students or adults. You don’t. Never have and never will. You are merely a second rate (to put it nicely) pediatrician who puts children like mine at risk by increasing the chances of outbreaks of infectious diseases. OK, not merely, you also promote faux medicine claiming to treat autism.

You know what keeps me up at night, Bob? The fear of my kid going through a state of constant seizures. You know what can cause that? Infections. The sort that you and I just brush off can cause that. I have no idea what a major disease like measles will do, but it won’t be pretty. There’s only one way for me to find out and that’s an outbreak in California. And, yep, not everyone mounts a response to the measles vaccine. Guess how I will find out for sure if my kid is one for whom the vaccine doesn’t take? That’s right, by an outbreak.

And the same goes for multiple other vaccine preventable diseases.

Your patient imported measles years back, because you encourage parents to avoid vaccinations. You can frame it however you want, about how you are giving parents “choice”, but the truth is you just give out bad advice. It’s one thing for the average internet troll to give out bad advice, but you are supposed to be a physician.

On that topic, I live in California, have family not far from your practice and could, if I chose to, visit your office for consultation and treatment. I never will. Not just is your stance on vaccines dangerous, but your approach to autism is as well. You are just another “defeat autism now” doctor who packages other people’s ideas into a book you can sell. Writing a book and attending conventions like AutismOne where others like you sell their faux medicine doesn’t give you the right to speak for my kid. Or any autistic kid in California.

You speak for yourself–a man who has left reason behind. Don’t claim to speak for my kid. Ever.


By Matt Carey

“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.

Will a new IACC be seated soon?

22 Mar

The United States has a committee enacted by law called the Interagency Autism Coordinating Committee or IACC. The IACC describes itself on its web page as:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.

The IACC mission is to:

Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.

Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.

Increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.
IACC meetings are open to the public and include presentations and discussions on a variety of topics, including activities and projects of the IACC, recent advances in science and autism policy issues. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the meetings & events page.

The thing is, the IACC hasn’t had a meeting since last September, and that wasn’t even a full committee meeting. They haven’t met because the committee was dissolved since the law that created that generation of the IACC ended. A new law was passed and enacted before the previous law hit its sunset date, and so the activities of the IACC will continue through 2019. A nomination process was opened to reconstitute the committee last fall.

Consider the events surrounding the formation of the recently ended IACC (the third committee if you are keeping count). We (I was a member) were formed at the end of March 2012 after a hiatus following the sunset of the 2nd committee in September of 2011. While the press release is dated the end of March, my recollection is that the announcement came April 1st.

So, here we are, nearing the end of March following the sunset of the previous committee in September of last year.

Nothing says that they have to follow the same pattern, but it would be reasonable to expect a new committee to be announced soon. As in April 1st, the start of Autism Acceptance Month (aka Autism Awareness Month). Expect a lot of press releases around April 1 and 2 (World Autism Awareness Day) for various autism related activities, mostly centering around the “awareness” month.

This said, I suspect the speculation will soon turn to who will be on the new (4th) Committee. It’s very safe and very appropriate to say that organizations which fund a lot of research will have representation on the Committee. Thus, someone from Simons Foundation (the largest private funder of autism related research), Autism Speaks and Autism Science Foundation. Someone forwarded me a link stating that the representative from SafeMinds was not seeking reappointment, but that doesn’t mean another member of SafeMinds couldn’t be appointed.

While the Autism Society of America doesn’t fund much research, they are a large member organization and someone from ASA has been on the IACC for at least the past two incarnations.

The Autistic Self Advocacy Network, ASAN, had a member on each of the last two committees. My understanding is that the ASAN representative to the last committee (Scott Robertson) landed a position in government which posed a conflict and he had to resign the last IACC. He was not replaced with a self advocate, ASAN member or not. So, I would not be surprised if there is not an ASAN member on the next committee. I also wouldn’t be surprised if an ASAN member is on the next committee. (How’s that for hedging my bets)

The law which calls for the IACC requires self-advocate representation. Scott Robertson, Noah Britton and John Elder Robison were on the previous committee and all were excellent. Noah did a great deal of work in writing subsections of the IACC strategic plan. John is likely the most vocal of any member on the Committee (aside from Tom Insel, the chair) and is pretty much willing to take on any topic, and able to speak to it well.

It was recently pointed out to me that the self-advocates so far have all been Caucasian males. While I appreciate the contributions of John, Scott and Noah, I would greatly appreciate seeing more diversity in this area.

I won’t go through all the rest of the public members, but I will bring up a few. David Mandell is a researcher I’ve had a great deal of respect for since pretty much I started reading autism research. He has a great deal of expertise on services, which is an area that will be of heightened importance for the next Committee. In the area of services, Paul Shattuck would be an excellent new addition. Both Paul and David ask questions few others ask–focusing attention on populations that just don’t get the attention that they should. Either or both would be an asset to the next Committee.

Geri Dawson was on the previous IACC, starting as a member of Autism Speaks. She is incredibly knowledgeable about autism research, especially what is current (and in the pipeline).

One person I would like to see return is Sally Burton-Hoyle. I wrote about a presentation she gave to the IACC last year. If you watch her presentation (it’s on the teen transition and supporting autistics in college, something she knows a great deal about as that’s her job) you will see that she’s also quite on target as someone to contribute for the new services focus of the IACC. She also represents a constituency we don’t speak to enough: adults who are not self-advocates. She had an adult autistic brother. Sally Burton-Hoyle and Alison Singer were the two people I am aware of who represented non self-advocate adults (Alison has an autistic brother).

I felt strongly that the IACC should not have been disbanded but continued with additional members added to meet the new mandates (and, also, allowing for those members who wanted to be done to be replaced). The new law was in effect in time to allow for the committee to continue. The House Report (from the Energy and Commerce Committee) stated:

The Committee appreciates the diverse makeup of IACC, and would like the panel to continue to represent the diversity within the autism community and remain a place where all viewpoints can be heard. Current members include parents and legal guardians, individuals with an autism diagnosis, advocacy organizations, and medical researchers. The Committee believes that these groups should continue to be represented. After previous reauthorizations of the Combating Autism Act, IACC has been dissolved and reconstituted. The Committee believes that this is unproductive and disruptive, and would like IACC to remain active, as the changes in this bill are instituted to ensure continuity.

But that’s in a report, not the law. While I agree with the Report, it might have helped if Congress had included this language in the bill. This language together with appropriations sufficient to staff the Office of Autism Research Coordination to a level that they can support the IACC and the other duties OARC has.

There’s a lot to do for the next Committee. There is a mandate to produce a services plan. The Stategic Plan for Autism Research needs to be updated. Besides the lost time in dissolving and reconstituting the IACC, the previous Committee was experienced and could have started work immediately.

Again, I’m expecting the next Committee to be announced in about a week and a half (April 1 or 2). I had hope it wouldn’t take this long, and I have even more hope that it won’t take longer than that. There’s a lot to be done.


By Matt Carey

D.A.I.R. Foundation 2013 tax form, about $100k in revenue, $20k in program expenses

5 Mar Dr-Wakefield-Solina-and-Lee[1]

A few years back Andrew Wakefield decided to sue the BMJ and Brian Deer.  This followed a series of articles and public statements that Mr. Wakefield’s work was an “elaborate fraud” and Mr. Wakefield himself was a fraud.   Lawsuits involve attorneys and attorneys cost money, so a few efforts arose to help Mr. Wakefield pay for these costs.  I believe the first was the “Dr. Wakefield Justice Fund”.  This didn’t come across as a major effort, the twitter account made three tweets, the website appears to be down (here’s an archived version), and it doesn’t appear to have made charity status.  Another effort that came out was the Academic Integrity fund.  Again, the website seems to be down, but again there’s the archive.  In many ways it’s too bad that site didn’t continue as it because a place for Mr. Wakefield to place essays.  And his writing, while tedious, produced interesting insights into his thoughts. For example:

Obama must meet the autism tragedy head on and deal with the proximate cause of the epidemic – unsafe and untested vaccination practices.

This from a man whose supporters claim never says that vaccines cause autism.

And we can also read the approach that would later prove fatal for Alex Spourdalakis: autism must be considered a medical, especially gastrointestinal, condition and that psychiatric medications to be avoided and that are behind mass murderers.

Tragically, predictably, there will be more events like at Sandy Hook Elementary. The vast number of individuals with developmental disorders presages such events. This is not because of their diagnosis, per se, but rather I would suggest, because they may be at increased risk for adverse reactions (due to pre-existing conditions) and are being inappropriately medicated with drugs for which violence is a recognized adverse reaction. These drugs are being prescribed by a “mainstream”

Not all the fundraising efforts failed.  We also saw the rise of a group calling itself the “Defending Academic Integrity and Research” or D.A.I.R. Foundation.  D.A.I.R. states under “what we do”:

Justice is accessible only to those who can afford it. D.A.I.R. Foundation provides legal aid, coordinated public relations support, and educational materials that support the work of our sponsored applicants.

Reading their site, one applies for support and D.A.I.R. provides financial support, PR and other help.

D.A.I.R. Foundation has an open request for proposals from researchers, physicians, scientists, and academic policy drivers who have come under attack and are interested in applying for legal aid. Please Contact Us and note in the subject line “Applicant Inquiry”. Applicants follow an approval review process. Applicants who are accepted will be expected to agree to terms and conditions of the legal aid process to include partnership in strategy that assures success and can be leveraged in future cases, proceeds to D.A.I.R. Foundation following legal compensation, and development of educational and public relations materials. We also assist in reputation management

I emailed them asking for a copy of their “terms and conditions” but they did not reply.  I find it interesting that people are expected to work with D.A.I.R in developing educational an public relations materials, and apparently provide a share of the proceeds of any legal settlements they achieve.

They hold fundraisers, and it appears that Andrew Wakefield is a featured speaker at these events.  The event linked on their website was not inexpensive, but also appears to have left a large number of seats unsold. (click to enlarge)

DAIR fundraiser

Of course this leaves us wondering, how much money did D.A.I.R. bring in and how did they use it?  Well, here’s the D.A.I.R. Foundation 2013 form 990.

From this we learn that they brought in $104,488.  Of that $20,859 was spent on a grant (I assume to Andrew Wakefield).  But that is less than 1/3 of their expenses. (click to enlarge)

DAIR 1

They spent $14,889 on salary for Dawn Loughborough (the executive director). They spent $15,256 on catering and $7,383 on travel, plus other expenses. (click to enlarge)

DAIR 2

Or, to put it simply: they took in about $100k.  Of this about $20k went to actual program expenses, over $45k went to salary and other expenses and about $37k was left in the bank.

If you dontated, about $0.20 of each dollar went to program expenses (presumably Mr. Wakefield’s expenses) about $0.45 went to overhead and about $0.35 may be used for program expenses at a later time.

Should this grant have gone to Mr. Wakefield, I don’t see that covering a large fraction of his expenses for his failed lawsuit.  Perhaps I’m wrong, but the effort involved multiple lawyers and many, many pages of documents.

By Matt Carey

Hey Jimmy Kimmel, thanks from your autism community!

3 Mar

Jimmy Kimmel, member of the autism community (he has an autistic family member) took on the anti-vaccine movement in a segment of his show:

He starts out with a monologue and then gives a PSA. The PSA is well worth watching. All the way through.

As you can imagine, this did not go over well with some people. He got a lot of hatred flung at him and claims that he is attacking the autism community. It’s the “use my kid as a human shield” defense.

And Mr Kimmel (member of the autism communities) stood his ground, with humor:

We need more people standing up against those who scare people about vaccines. And by “we” I mean the autism community and the developmental disability community. Our community is the most at risk for injury or death from infectious diseases. Diseases that injure or kill do so more to our communities (Why vaccination uptake matters to the autism community).


By Matt Carey

Is Andrew Wakefield’s Strategic Autism Initiative failing?

3 Mar

When Andrew Wakefield left Thoughtful House he set up a charity, the Strategic Autism Initiative.  Interestingly even now, years after it was founded, it appears to have no website or Facebook page.  What it does have is tax forms because every charity must make those public.   Last year when I looked these tax forms, a few points became apparent.  Most of the money the SAI had taken in (58%) had gone to salaries, with the lion’s share of that going to Mr. Wakefield himself.  In 2012 more money was spent on salaries that was taken in.  SAI appears to have two employees, Andrew Wakefield and Terri Arranga.  Here are the contributions to the SAI, Mr. Wakefield’s salary and Ms. Arranga’s salary for the years 2010, 2011, 2012.

SAI contributions and salaries

And here are the tax forms:

Strategic Autism Initiative 2010 tax form
Strategic Autism Initiative 2011 tax form
Strategic Autism Initiative 2012 tax form

It is worth noting that the SAI was formed towards the end of 2010, hence the low salaries for that year.

Donations were down dramatically from 2011 to 2012 leaving one to wonder: what would 2013 bring?  Did the downward trend continue? Well, here’s the 2013 tax form:

Strategic Autism Initiative 2013 tax form.

Gross receipts: $50,498, down from $113,501 for tax year 2012.  A drop of over 50%.  The SAI ran a deficit of $97,514, nearly twice what they took in.  Mr. Wakefield took no salary, Teri Arranga only $5,000.  The SAI only had $21,396 in assets at the end of the year.

In short: the SAI appears to be failing. OK, in terms of benefit to the autism communities, the SAI has continually failed.

SAI 2013 form 990

Below are the “program service accomplishments” for the SAI in 2012 and 2013.  Program services are the heart of what a charity is doing.  Well, a standard charity.  That said, ignore the money amounts listed and tell me if you can see any difference in the text.  It looks to me like they copy and pasted the accomplishments from 2012 into 2013.  If I wrote the same accomplishments one year to the next, my management would likely let me go for accomplishing nothing in a year.

SAI 2012 program services SAI 2013 program services

This tax form–the most recent one available–is from 2013.  We will have to wait for the 2014 form but if this trend continued, the SAI is either failing or has failed as an organization.

By Matt Carey

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