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Press Release: IACC Reauthorized by Autism CARES Act to Continue Through 2019; HHS Seeks Nominations for Public Membership

1 Oct

Below is a press release about the nomination process for the next Interagency Autism Coordinating Committee (IACC).  Note: I served as a public member to the previous IACC but my comments here and elsewhere are my own.

IACC Reauthorized by Autism CARES Act to Continue Through 2019; HHS Seeks Nominations for Public Membership (PDF – 94 KB)

On August 8, 2014, President Obama signed the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2014 (PDF – 256 KB) into law, reauthorizing and expanding the provisions of the Combating Autism Act of 2006 (PDF – 142 KB). New provisions include an increased focus on services and supports, a report on the needs of transitioning youth and adults, and the creation of an Autism Initiative within the Department of Health and Human Services to ensure accountability and ongoing implementation of autism activities across the Department. The new law also reauthorizes the Interagency Autism Coordinating Committee (IACC) to continue until September 30, 2019.

The IACC is a federal advisory committee composed of federal officials and non-federal public members, including autism self-advocates, family members, representatives of private autism organizations, and other public stakeholders. The committee is charged with:

  • Providing annual updates on its Strategic Plan for Autism Spectrum Disorder (ASD) Research, which under the new law will be expanded to include recommendations on services and supports provision;
  • Providing annual updates on its Summary of Advances in ASD Research, a document that summarizes each year’s top ASD research advances;
  • Providing advice and recommendations to the HHS Secretary regarding issues related to ASD;
  • Providing a forum for public discussion of issues related to ASD.

As a federal advisory committee, the IACC does not have authority or appropriations to fund research or services activities, nor to implement federal programs. The IACC’s role is to provide advice that can be used by federal agencies to guide them in setting program and funding priorities, and in developing partnerships with private organizations to address issues of importance to the autism community.

Under the Combating Autism Reauthorization Act of 2011 (covering the period from 2011-2014, PDF – 121 KB), the IACC completed several important projects, including issuing: a letter to HHS Secretary Kathleen Sebelius regarding the need to fill critical gaps in health coverage for people on the autism spectrum; a statement from the Committee on the 2012 update in the ASD diagnostic criteria, which emphasized the importance of basing healthcare and service provision decisions on the need of the individual; and an in-depth 2013 IACC Strategic Plan Update that analyzed progress made over a five-year period (2008-2012) toward implementing the recommendations in the IACC Strategic Plan.

Reflecting on the completion of the current IACC members’ terms on September 30, 2014, IACC Chair Dr. Thomas Insel stated, “We deeply appreciate the contributions and accomplishments of the IACC members who served on the Committee from 2012-2014, and we look forward to working with the new committee, starting in 2015, to address the community’s most pressing ASD research and services needs.”

The Autism CARES Act extends the work of the IACC another 5 years to 2019. The Department of Health and Human Services (HHS) is currently seeking nominations of individuals to serve as non-federal public members on the next iteration of the committee. Members of the public are welcome to nominate individuals with personal and/or professional experience with ASD for public membership on the committee. The Office of Autism Research Coordination (OARC) at the National Institutes of Health, which manages the IACC, will assist the Department in collecting public member nominations. Selections and appointments of public members will be made by the Secretary of Health and Human Services.

For more information on the IACC public member nomination process, please see the 2014 IACC Call for Nominations Announcement.***

The IACC is a federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC provides advice to the U.S. Department of Health and Human Services on activities related to ASD, and works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.

Interagency Autism Coordinating Committee 2014 Call for Nominations Announcement

1 Oct

Below is the call for nominations announcement for membership in the next IACC.

Note: I served as a public member to the IACC in the last term, but my comments here and elsewhere are my own.

Interagency Autism Coordinating Committee
2014 Call for Nominations Announcement

Introduction

The Interagency Autism Coordinating Committee (IACC), established in accordance with the Combating Autism Act of 2006 (Public Law 109-416, PDF – 49 KB) and reauthorized by the Autism Collaboration, Accountability, Research, Education and Support Act of 2014 (Public Law 113-157, PDF – 211 KB), is open from October 1, 2014- November 14, 2014 for nominations of individuals to serve as non-federal public members on this committee (see press release). The Secretary of Health and Human Services (Secretary), who will make the final selections and appointments of non-federal public members, has directed the Office of Autism Research Coordination (OARC) to assist the Department in conducting an open and transparent nomination process.

Who Is Eligible?

Nominations of new non-federal public members are encouraged, but current non-federal public members may also be re-nominated to continue to serve. Self-nominations and nominations of other individuals are both permitted. Only one nomination per individual is required. Multiple nominations for the same individual will not increase likelihood of selection. The Secretary may select non-federal public members from the pool of submitted nominations and other sources as needed to meet statutory requirements and to form a balanced committee that represents the diversity within the autism spectrum disorder (ASD) community. Those eligible for nomination include leaders or representatives of major ASD research, advocacy and service organizations, parents or guardians of individuals with ASD, individuals on the autism spectrum, healthcare and service providers, educators, researchers and other individuals with professional or personal experience with ASD. In accordance with White House Office of Management and Budget guidelines (FR Doc. 2014–19140), federally-registered lobbyists are not eligible.

Responsibilities of Appointed Non-Federal Public Members

As specified in the Committee’s authorizing statute (section 399CC of the Public Health Service Act, 42 U.S.C. 280i-2, as amended), the Committee will carry out the following responsibilities: (1) monitor autism spectrum disorder research, and to the extent practicable, services and support activities, across all relevant Federal departments and agencies, including coordination of Federal activities with respect to autism spectrum disorder; (2) develop a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or ruling out a diagnosis; interventions, including school and community-based interventions, and access to services and supports for individuals with autism spectrum disorder; (3) make recommendations to the Secretary regarding any appropriate changes to such activities, including with respect to the strategic plan; (4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder, and the process by which public feedback can be better integrated into such decisions; (5) develop a strategic plan for the conduct of, and support for, autism spectrum disorder research, including, as practicable, for services and supports, for individuals with an autism spectrum disorder and the families of such individuals, which shall include (A) proposed budgetary requirements; and (B) recommendations to ensure that autism spectrum disorder research, and services and support activities to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative; and (6) submit to Congress and the President: (A) an annual update on the summary of advances; and (B) an annual update to the strategic plan, including any progress made in achieving the goals outlined in such strategic plan.

Committee Composition

In accordance with the Committee’s authorizing statute, “Not more than 1/2, but not fewer than 1/3, of the total membership of the Committee shall be composed of non-Federal public members appointed by the Secretary.”

All non-Federal public members are appointed as Special Government Employees for their service on the IACC, of which:

  • At least two such members shall be individuals with a diagnosis of autism spectrum disorder;
  • At least two such members shall be parents or legal guardians of an individual with an autism spectrum disorder; and
  • At least two such members shall be representatives of leading research, advocacy, and service organizations for individuals with autism spectrum disorder.

The Department strives to ensure that the membership of HHS Federal advisory committees is fairly balanced in terms of points of view represented and the committee’s function. Every effort is made to ensure that the views of women, all ethnic and racial groups, and people with disabilities are represented on HHS Federal advisory committees and, therefore, the Department encourages nominations of qualified candidates from these groups. The Department also encourages geographic diversity in the composition of the Committee. Appointment to this Committee shall be made without discrimination on the basis of age, race, ethnicity, gender, sexual orientation, disability, and cultural, religious, or socioeconomic status. Requests for reasonable accommodation to enable participation on the Committee should be indicated in the nomination submission.

Member Terms

Non-Federal public members of the Committee “shall serve for a term of 4 years, and may be reappointed for one or more additional 4-year terms… Any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of such term. A member [with a valid appointment] may serve after the expiration of the member’s term until a successor has been appointed.”

Meetings and Travel

“The Committee shall meet at the call of the chairperson or upon the request of the Secretary. The Committee shall meet not fewer than 2 times each year.”

In the years 2008-2014, the IACC held an average of 16 meetings, workshops and phone conferences per year, including full committee, subcommittee, working and planning group meetings, and workshops. Travel expenses are provided for non-federal public Committee members to facilitate attendance at in-person meetings.

Submission Instructions and Deadline

Nominations should include a cover letter of no longer than 3 pages describing the candidate’s interest in seeking appointment to the IACC, including relevant personal and professional experience with ASD, as well as contact information and a current curriculum vitae or resume. Up to 2 letters of support are permitted in addition to the nomination, with a page limit of 3 pages per letter. Please do not include other materials unless requested.

Nominations are due by 12:00 midnight Eastern Friday, November 14, 2014 and may be sent to Dr. Susan Daniels, Director, Office of Autism Research Coordination/NIMH/NIH, 6001 Executive Boulevard, Room 6184, Bethesda, Maryland 20892 by standard or express mail, or via e-mail to IACCPublicInquiries@mail.nih.gov.

More information about the IACC is available at www.iacc.hhs.gov.

A “reanalysis” of the Price study on autism and thimerosal goes very wrong

25 Sep

A few years ago a study came out looking intently at the question of whether thimerosal in vaccines increases autism risk. That study, Prenatal and Infant Exposure to Thimerosal From Vaccines and Immunoglobulins and Risk of Autism, approached the question from many angles, including those suggested by parent advocates who believed (and still believe) that thimerosal was a driving force in the increased prevalence of identified autism in the U.S.. There were so many questions asked and so many results that the paper did not include all of those results. They just wouldn’t fit in a published paper, for one thing. So the authors put out additional reports including those extra tests.

One question they asked was whether the combination of exposure to thimerosal before birth and after birth would increase autism risk. This was an “interaction” model–how do these factors interact to create any possible autism risk. In their report the authors included not only the final result, but the sub-results. The pieces that they combined to calculate the final analysis.

Below is an example of one of those analyses. These are data involved in calculating how pre-natal thimerosal exposure combined with post-natal exposure up to 7 months of age might interact to create autism risk. The authors were kind enough to put boxes around statistically significant results–blue for results which indicate decreased risk and red for increased risk.

Abt-Autism-873

Now, let’s say I took the exposure by 7 months point and said, “Hey, look! Thimerosal exposure in the first seven months of life reduces autism risk by a factor of 4.28!” Well, that would be dishonest wouldn’t it? Taking a single sub result in an interaction model isn’t valid.

If I chose a different model from the same report I could quote a 1/OR (inverse odds ratio) of 113.59. A huge “protective” effect. Very dramatic. 113 times lower risk! But just as with the previous example, if I cherry picked this data point my own community would call me out for being dishonest. And they’d be right to do so.

I’m going to repeat that for emphasis because it isn’t obvious but it is very important: taking a single sub result in an interaction model is not valid. These sub results are only valid when incorporated into the full model and calculation performed.

Here’s something else that would be incorrect, and is more obvious: reporting only the results one wants to report. Ignoring the other results–especially the final result. In this case the final result is that the interaction of prenatal exposure and post natal exposure by 7 months does not increase autism risk. If I pulled out the sub result and said, “hey post natal thimerosal is protective” that would be misleading. If I ignored that red box you see with an odds ratio of 8.73, indicating a higher risk with thimerosal, that would be misleading.

Incorrect. Dishonest. Invalid. Take your pick of terms. It’s wrong.

So, what if I told you someone sifted through the report and cherry picked the results in the red boxes and was going around telling people “prenatal exposure to thimerosal increases autism risk by as much as a factor of 8.73. Would that be honest in your opinion?

Remember Brian Hooker?

If you don’t, he’s the guy who decided to publicize his paper with a race-baiting YouTube video claiming that a scientific disagreement among CDC researchers amounts to a new Tuskegee experiment? That scientific disagreement being whether to discuss one preliminary result or leave it out of a paper?

For some time now Mr. Hooker has been giving talks about how the data from the Price study shows an increased risk for autism and regression with thimerosal exposure. He doesn’t show exactly where he got the numbers he reports. But the number he likes to quote, 8.73, pretty much only appears in the figure above. He’s reporting on a sub result in an interaction model, which is not valid. He’s not reporting on the other sub results, nor the final result of the interaction model.

You can see him do this in his recent talk which has been posted to YouTube:

Let’s go into this in more detail, for those who would like to see that. His talk on this study starts at about 32 min in to the video. Mr. Hooker claims that he got the background reports from a “congressional request”. That’s around minute 37 in the talk. Sounds really impressive. Perhaps Mr. Hooker did get them through a congressional request. Which would beg the question of why he didn’t just download them from the web. The reports have been freely available since the Price Study was published. If one reads the Price study, as one would expect Mr. Hooker has done, references 10 and 11 are the reports, complete with url. These are online (here and here). Minor point I know, but it goes to show the amount of spin coming from Mr. Hooker and his team.

A few other points from his discussion of the Price study:

Mr. Hooker calls the Price study “fatally flawed”. He goes into great detail about why he feels this study is not valid. It’s a lot of hand waiving and his arguments are not valid. But it’s also problematical to spend a great deal of time tearing down a study to then rely on it for your own argument.

You see after he goes on and on about how he feels this study is not statistically valid, Mr. Hooker then appears to forget why the study is not, in his view, statistically valid and goes for the least statistically strong part of the study–that involving the smallest sub group.

He calls his discussion of the Price study a “reanalysis”. That’s not the word I use for skimming through publicly available reports and pulling out results that the authors put red boxes around. Again, it’s just spin.

At 36 minutes in you can see Brian Hooker claiming that the refusal rate was too high for the study to be valid (again, somehow that argument magically goes away for his “reanalysis”) and cheering and telling his audience to refuse to participate in CDC studies.

This is not the act of someone who wants to know the truth, of a true advocate, in my opinion. This looks to me like someone showing a strong bias towards the CDC. This advice goes counter to what I and my family need.

As an aside: if you watch Mr. Hooker’s full talk (don’t worry, it isn’t the full 8 hours of the video, just about an hour) you will see that it’s basically three parts. Part 1 is about his MMR paper with lots of references to the “whistleblower” (what whistle was blown again?). Part 2 is the Price study “reanalysis” (since when is reading someone else’s report a “reanalysis”). Part 3 is a discussion of tics with references to the “whistleblower” again.

Notice the pattern–there’s no discussion of the “whistleblower” in the discussion of the Price study. The area that is the most important to Mr. Hooker, thimerosal and autism, and no input from the “whistleblower”? Take a look at the Price study and answer this question: who is the second author on that study? That’s right, the “whistleblower”.

As I recall, Mr. Hooker claims to have been in contact with his “whistleblower” for about 10 months. It strains credulity to think that in that time Mr. Hooker never asked about the Price study. It further strains credulity to think that if Mr. Hooker had anything from the “whistleblower” to attack the Price study, he would hold it back.

Which is to say: I think he got nothing from his “whistleblower” on the Price study.

There’s a lot more wrong with Mr. Hooker’s “reanalysis”. But I’ll bring this back to this:

Abt-Autism-873

Yes, I admit it’s a bit obscure to know that you don’t pull a sub result out of an interaction model. It’s not so obscure that Mr. Hooker should be excused for doing it. But reporting the one sub result in the red box and ignoring 8 blue boxes? That’s not obscure. That’s just wrong.

—
By Matt Carey

ASAN Statement On Dr. Phil Episode Featuring K. Stapleton

20 Sep

Below is a statement by the Autistic Self Advocacy Network.

The Autistic Self Advocacy Network issued a statement on Friday, September 19th, condemning Dr. Phil for recent segments featuring Kelli Stapleton.

Stapleton is currently standing trial and has pled guilty to the charge of first-degree child abuse for the attempted murder of her autistic daughter, Issy Stapleton, age 14. The Dr. Phil segments are consistent with the broader media coverage in the year since the attempted murder; rather than rallying with sympathy and support for a child victim of attempted filicide, there have been near-constant attempts to excuse and justify her murderer and paint the person who tried to kill her–her own mother–as the “real” victim. But this abhorrent and retraumatizing brand of violence found a new voice and a new vigor on Dr. Phil.

In the segments, K. Stapleton has been granted new means to exploit her victim. Whether this comes in the form of violating her daughter’s privacy by sharing some of her most vulnerable moments with the world; crafting a sensationalized and dehumanizing narrative of her daughter’s life; using this narrative to solicit dubious donations; or committing character assassination by emphasizing her daughter’s “violence” and painting her as monstrous, Dr. Phil offered an abusive and murderous parent a platform, with no regard for the consequences to her victim–or the potential copycat effects.

“We see a pattern of copycat crimes whenever there is a well-publicized case of a parent murdering, or attempting to murder, their disabled child” said Julia Bascom, ASAN’s Director of Programs. “Every time this happens, commenters come out of the woodwork offering every possible excuse, and nothing could be more dangerous. As disabled people, our lives aren’t valued, and we see the consequences in every one of these headlines. Stapleton attempted to kill her daughter one year ago in the wake of an extremely well-publicized and extraordinarily hateful hatchet job about the murder of another autistic teenager, Alex Spourdalakis. Dr. Phil had an opportunity to shut down this cycle of violence, and instead he chose to perpetuate it, as loudly and widely as possible.”

The victim of child abuse is not the adult abuser. The victim of murder is not the murderer. K. Stapleton is not the victim of her attempted filicide, but she has been allowed to re-victimize her target. The Autistic Self Advocacy Network forcefully denounces Dr. Phil for facilitating this violence, and urges the disability community to join us in breaking the cycle of violence and copycat murders we see year in and year out. Join us in sending this message: it is always wrong for a parent to murder their child. There is never a justification. There are always other options. The only victims here are disabled people murdered by those we should have been able to trust the most.

And to Issy Stapleton, the only victim of this tragedy, the only person whose voice deserves to be heard here, we say: what your mother did was not okay, and it wasn’t your fault. There is a whole world of people who support you. We are sorry this happened to you, and we are doing everything in our power to make sure it can never happen to anyone, ever again. You deserve nothing less.

Andrew Wakefield loses frivolous defamation lawsuit. To pay court costs.

19 Sep

In 2011 the British Medical Journal (BMJ) published a series of articles about Andrew Wakefield and his efforts to promote the idea of the MMR vaccine causing autism. Brian Deer has a list of links on his website: Secrets of the MMR scare. Here are just a few of those links:

Piltdown medicine – the missing link between MMR and autism

Editorial: Wakefield’s article linking MMR with autism was fraudulent

How the case against the MMR vaccine was fixed

How the vaccine crisis was meant to make money

The Lancet’s two days to bury bad news

Nearly a year after those were published, Andrew Wakefield took issue with his work being declared fraudulent and sued for defamation. Not in the UK, where the laws are very favorable to him. No, instead he chose his home state of Texas. Mr. Wakefield’s original suit was denied on the grounds that he did not have the standing to bring suit against the BMJ in Texas. Mr. Wakefield appealed. And lost.

In the recent appeal the judgment the court stated:

This is an appeal from the judgment signed by the trial court on August 3, 2012. Having reviewed the record and the parties’ arguments, the Court holds that there was no reversible error in the trial court’s judgment. Therefore, the Court affirms the trial court’s judgment. The appellant shall pay all costs relating to this appeal, both in this Court and the court below.

The full judgment can also be found online.

[Edit to add–see the discussion below. It is quite possible that I did not read this correctly]

If I read this correctly, Mr. Wakefield will be paying the costs the BMJ team incurred as well as his own. And, not only in the appeal, but also “in the court below”, which I read to be in the original suit. To put it simply–Mr. Wakefield may be in the position of paying the costs going back to when he first filed his defamation case.

The BMJ team and Mr. Wakefield’s team were four attorneys each. I would expect that Mr. Wakefield’s costs run into many tens of thousands of dollars. I would expect that the BMJ’s costs are likely even higher.

Which brings us to the obvious question: with a gamble of this size, what would this appeal have accomplished had Mr. Wakefield won? Well, for starters the BMJ team’s Anti SLAPP suit would have moved forward. Texas had just enacted Anti-SLAPP legislation at the time Mr. Wakefield filed suit (as an aside, if I recall correctly this is one of the blunders of Mr. Wakefield’s suit–waiting until after the new law was in place to file). SLAPP stands for Strategic lawsuit against public participation. The BMJ suit essentially puts for the idea that Mr. Wakefield’s defamation suit was a cynical attempt to stop the BMJ (and others) from voicing public criticism about Mr. Wakefield’s actions. Mr. Wakefield faced heavy penalties had the Anti-SLAPP suit gone forward and had the BMJ won.

This is the fourth time that Mr. Wakefield has attempted to “gag the media” as Mr. Deer puts it. And now the fourth time Mr. Wakefield has lost. One can never tell for certain, but it seems likely that Mr. Wakefield would have lost the Anti-SLAPP suit.

Let’s say Mr. Wakefield avoided an Anti-SLAPP judgment. He would have been able to bring his defamation case to court on the merits. Not on the merits of his scientific work, but on the question of whether the BMJ team could rightfully call his work fraudulent. A case the BMJ team certainly prepared for before going to press. And prepared to defend in the UK, where the laws are much more favorable to Mr. Wakefield. Which is to say, I suspect the BMJ felt strongly that they had checked all their facts closely and were well defended in any and all statements they made.

From my point of view, this defamation lawsuit was a vanity exercise by Mr. Wakefield. It got his name in the news. It may have slowed criticism of him for years. He got to look like a hero to his own community.

And he threw tens if not hundreds of thousands of dollars down the tubes in the effort. Mr. Wakefield heads the “Strategic Autism Initiative” which has the purported goal of funding autism research. Last I checked the majority of the money collected for the SAI went to salaries. Mr. Wakefield’s being the lion’s share. Be that as it may, Mr. Wakefield had an option a few years ago: fund autism research or fund this lawsuit.

Well, we see his choice. And the result. Sure there may be a further appeal. Take it to the Texas Supreme Court and delay some more. And run up more bills to pay.

—
By Matt Carey

When a child is killed by a parent the word “but” does not apply

13 Sep

Isabelle Stapleton is an autistic teenager. Thankfully we get to say “is” as, you see, her mother tried to kill Isabelle (“Issy” to her friends). The mother took her daughter to a remote area and lit two charcoal grills in her van so that the carbon monoxide would poison them both.

It has been reported that at times Isabelle has been violent. Keep in mind most of those reports seem to source back to the mother, the mother who tried to kill her. I’m not trying to downplay Isabelle’s struggles. Some in our community have very great needs.

“Dr. Phil” has interviewed Isabllele’s mother. People Magazine has a story up on it. Whenever these stories go online I cringe. Rarely are they handled well. And I cringe even more at the comments I know will be there.

One can just bet that many comments will take the form, “no one should kill her child…..but…..”

There is no “but” in this. No one should commit murder. No parent should kill her child. Full stop. Period. “But” does not apply.

Variants of this are “don’t judge her” and “until you walk in her shoes”.

“Judge” means to form an opinion.

For those who write that: the mother tried to kill her daughter. I will form an opinion about this–this is wrong. I don’t have to “walk in her shoes” to say that. Why won’t you form an opinion? Why does her daughter’s disability have anything to do with forming this opinion?

Just in case you are wondering: I did purposely write this without mentioning the mother’s name. The mother is not the story. When autistics have been murdered in the past there have been news stories that never mention the name of the victim.
—
By Matt Carey

Shannon Des Roches Rosa: Changing Conversations: When Parents Murder Disabled Children

11 Sep

Shannon Rosa is the incredible parent of incredible kids, one of whom is autistic. I could say this from what I’ve read because Ms. Rosa is an excellent writer, but I have also met her and Leo in real life. Ms. Rosa writes at BlogHer as well as The Thinking Person’s Guide to Autism and Squidalicious.

A recent BlogHer article she wrote covers a very important topic: how when a disabled person is murdered the conversation usually focuses on the murderer, not the victim

Changing Conversations: When Parents Murder Disabled Children

Her article starts:

Michigan parent Kelli Stapleton recently pled guilty to poisoning her autistic teen daughter Issy. According to police reports, Kelly lured Issy into a van, “drugged her, lit the grills and left the van to get more charcoal while her sleeping daughter breathed in poisonous carbon monoxide fumes.” Kelli and Issy both survived the attempted murder-suicide. Issy emerged from a coma and seems to be doing well; Kelli is in jail, and is scheduled to be sentenced on October 6th.

Go to Changing Conversations: When Parents Murder Disabled Children for the full article.

–By Matt Carey

An open letter to the National Whistleblowers Center: David Lewis and the outing of a CDC whistleblower

11 Sep
Dear National Whistleblowers Center,
 
I appreciate the work you do but I would like some clarification on recent events.
 
A gentleman came forward from the CDC to provide information about what he felt were inappropriately withheld results on an old autism study.  This gentleman guided someone outside the CDC to reproduce the result.  These results were published and with that publication a public relations campaign was started.  This is where your board member, David Lewis, comes into the story.  Mr. Lewis can be seen in the video produced.  That video can be found here: https://www.youtube.com/watch?v=sGOtDVilkUc
 
The original video was produced with the whistleblower’s name censored and his voice modified.  However, his gender was given, making it rather simple work for the CDC and everyone else to work out who this was (only one male was an author on the paper in question).  Within 3 days of the release of the video, the online version was replaced with the uncensored version you see now–the version with “whistleblower revealed” as a title.
 
Since that time the whistleblower has released a statement including noting
 
1) he never consented to having his phone calls taped
2) he never consented to having his identity released
3) it appears, thus, that the video was not shown to the whistleblower, so he could not have approved of the rather ugly race-baiting angle it took.
 
 
Here are some other problematic details in these events.
 
1) Mr. Lewis is in the employ of the organization which did this study, Focus Autism.  Both Mr. Lewis himself and his charity/church have been paid according to public tax forms from Focus Autism.
 
2) Mr. Lewis does not make this conflict of interest known in the video.
 
3) Mr. Lewis has a history of working with the director of the video, Andrew Wakefield.  This includes soliciting donations through Mr. Lewis’ church with the purpose of using those funds to support Mr. Wakefield. 
 
4) Mr. Wakefield has major conflicts of interest in this video as he is trying to rebuild the reputation he damaged with his unethical actions (as deemed by the U.K.’s General Medical Council).
 
5) These COI’s are not disclosed in the video, although most in the autism community are well aware of Mr. Wakefield’s.
 
6) The video takes a very ugly race-baiting approach.  It takes what the whistleblower suggests is a scientific dispute and frames it as CDC officials partaking in a new “Tuskegee” experiment an compares the CDC officials unfavorably to Hitler, Stalin and Pol Pot.  This includes civil rights pioneer Marshalyn Yeagan-Allsopp.
 
Mr. Lewis has not issued a statement that I can find distancing himself from the actions of his team: the breach of confidentiality of the whistleblower nor the cynical use of the whistleblower for political and public relations gain by Mr. Wakefield.   I can not see how the treatment of this whistleblower by Mr. Lewis’ team can be construed as appropriate. In the video we can see Mr. Lewis making use of the opportunity for product placement of his book, “Science for Sale”.  Given Mr. Lewis’ tacit approval of this video, again one put together for his own benefactor Focus Autism, I see his actions as “opinion for sale”. 
 
I write for a website called LeftBrainRightBrain.co.uk.  You will see I have been highly critical of the actions of the team that outed this whistleblower.
 
Could I ask for a statement from your organization?  Do you believe these actions to be within the bounds of appropriate behavior for one working with a whistleblower?  If so, could you elaborate, because recording a whistleblower without his permission, outing a whistleblower, and using the whistleblower for such an ugly public relations campaign without his approval seem far outside the bounds to me.
 
I look forward to your reply,
Matt Carey

NOVA: Vaccines — Calling the Shots

9 Sep

The question of vaccine safety comes up a lot in the online autism parent community. The PBS program Nova is taking a look at vaccines and vaccine safety in a show “Calling the Shots”. As they point out, it is OK to question vaccine safety, but that is just the start of the conversation. The program airs tomorrow (September 10) at 9pm.

It looks like it will be an excellent program.

Here is the webpage for the show complete with a brief sneak preview:

Here is a 3 1/2 minute

here is a “behind the scenes” look at the show

—
By Matt Carey

Every human life is worth living

4 Sep

This, like the previous article I wrote, is extremely difficult to write. I find words fail me and that a dry presentation doesn’t do justice to the topic. How, exactly, does one write about the fact that Germany has erected a monument to the disabled and mentally ill killed by the regime?

The New York Times discusses a monument erected in Berlin:

Monument Seeks to End Silence on Killings of the Disabled by the Nazis

BERLIN — The first to be singled out for systematic murder by the Nazis were the mentally ill and intellectually disabled. By the end of World War II, an estimated 300,000 of them had been gassed or starved, their fates hidden by phony death certificates and then largely overlooked among the many atrocities that were to be perpetrated in Nazi Germany in the years to follow.

One can read the full article on the New York Times website. And many other news outlets. I will take one more paragraph from the Times.

“Every human life is worth living: That is the message sent out from this site,” Monika Grütters, the German minister for culture, told a crowd gathered for the opening ceremony. “The ‘T4’ memorial confronts us today with the harrowing Nazi ideology of presuming life can be measured by ‘usefulness.’ ”

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By Matt Carey

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