Archive | January, 2012

Apply Now for a Travel Grant to IMFAR

18 Jan

IMFAR, the International Meeting for Autism Research is approaching and that means that it is time for the Autism Science Foundation’s Travel Grants. These are grants for stakeholders which reimburse up to $1,000 of expenses to attend IMFAR.

I was an ASF Travel Grant recipient last year. It was a great experience. A very busy experience, but a great opportunity to meet a number of researchers and see talks on the latest research.

Here is the email announcement from the ASF:

Apply Now for a Travel Grant to the International Meeting for Autism Research

The Autism Science Foundation announced today that it is offering a limited number of grants to parents of children with autism, individuals with autism, special education teachers, and other stakeholders to attend the International Meeting for Autism Research (IMFAR). This year the conference will be held in Toronto, Canada from May 17-19.

The awards will reimburse up to $1,000 of actual expenses and can be used to cover registration, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate.

“We are thrilled to be able to offer this program for the third year in a row and to give back to the autism stakeholder community in a research-focused way,” said Alison Singer, president of the Autism Science Foundation.

“These scholarships are a wonderful opportunity to bring more stakeholders to IMFAR and enhance discussion and interactions among all key constituencies,” said Dr. Helen Tager-Flusberg, President of INSAR and Professor of Psychology, Anatomy & Neurobiology and Pediatrics, Boston University.

To apply:

Open to all autism stakeholders: individuals with autism, parents of children with autism, special education teachers, graduate and undergraduate students, journalists, scientists, and others.
Grants can be awarded to US citizens only.
Applicants should send a letter to grants@autismsciencefoundation.org describing why they want to attend IMFAR and explaining how they would share what they learned with the broader autism community.
Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins.
In the email subject line please write: IMFAR Grant.
Letters must be received by February 29, 2012.

Additional application information is available at http://www.autismsciencefoundation.org/what-we-fund/apply-for-IMFAR-travel-grant.

Grant recipients will be announced in March.

Newt Gingrich, Autism Advocate

18 Jan

2012 is a presidential election year in the United States. With the campaigns comes the courting of voters. Newt Gingich, Republican Hopeful, has posted an article to his site: Newt Gingrich, Autism Advocate. It’s an excerpt from a Tea Party website article.

I’d love to take the time to go through Mr. Gingrich’s voting record on disability issues. The Republican Party has not always been the best ally from what I’ve seen. Should Mr. Gingrich move up in the ranking (he’s about 20 points behind Mitt Romney at the moment) perhaps I’ll take that time.

If you recall, 4 years ago the candidates courted the “autism vote” even to the point of thinking that we are all behind the failed vaccine-epidemic model of causation. Both Mr. Obama and Mr. McCain made statements on the subject. This campaign season has already seen the departure of Michele Bachmann, whose unsupported (“over the top” according to Time Magazine) statements on Gardasail were credited with contributing to her decline in the polls.

Time Magazine: Great Science Frauds

14 Jan

Add Time magazine to the list of those calling out Andrew Wakefield a fraud. Not just any fraud, a “great science fraud”:

Great Science Frauds

Thinking Person’s Guide to Autism, the first two chapters

12 Jan

When I first wrote about the Thinking Person’s Guide to Autism (TPGA) I mentioned I planned a series of articles. Multi-part discussions of books have been done before on Left Brain/Right Brain but usually for books that are, shall we say, less helpful than TPGA.

TPGA is a series of essays. Some are as short as two pages. Some up to 5 pages and maybe even more. The essays are arranged in chapters like “After the diagnosis: first steps” and “Autism–Adult Voices” and “Autism–Parent Voices”. This approach makes TPGA exactly the sort of book I find useful and I wish I had access to when my kid was first diagnosed. I love books. I love to read. But my approach to reading has had to change. In the past I’d read Robert K. Massie’s 928 page Peter the Great: His Life and World more than once. That was before kids. Kids, any kids, change your life in many ways. For those who find that they can still read lengthy books, you have my respect. I can’t. Being able to grab 5 or 10 minute to read an essay is more my usual approach these days. With TPGA you are also not stuck reading the book front to back. Want to read about “School and Education Issues”? Jump to that chapter. Want to read about “Therapies and Service Providers”? Flip to an essay in that chapter.

The introduction makes clear the scope and goals for the book.

The Goal of The Thinking Person’s Guide to Autism is to help you fast-forward past society’s rampant autism fabrications and negativity by providing clear, thoughtfully presented, balanced, and referenced information. We also want you to understand that autism awareness and acceptance are not merely noble but also necessary attitudes–and are separate matters from the autistic and other autism communities’ never-ending fights for medical, legal, social, and educational accommodation.

The first two chapters in TPGA are “After the Autism Diagnosis: First Steps” and “Practical Advice for Autism Parents”. Some essays can be found online and will give you an idea of the book. From the “After the Autism Diagnosis” chapter, here are a couple examples:

Squillo’sadvice in “What Now? Ten Tips for Families with a New Autism Diagnosis” is right on target. Here are some example topics: “Take a few days (at least) before making any important decisions” and “Keep a record of every interaction you have with schools, therapists, doctors, etc. regarding your child, even if it’s just a casual discussion in a hallway. Make copies of every questionnaire you fill out.”

Emily Willingham’s How Do People React When They Learn Your Child Has Special Needs? is likewise excellent.

Practical Advice for Autism Parents includes essays “Autism: Feeding Issues and Picky Eaters” by Judy McCrary Koeppen and Does Your Child With Autism Have a Daily Record? by Shannon Des Roches Rosa.

These are just examples but they make the point: there is a lot of information which is extremely valuable to parents who are trying to quickly come up to speed on subjects they probably have little experience with.

Also included in the “First Steps” chapter are two essays I would like to highlight. First is “Identifying and Avoiding Autism Cults” by Shannon Rosa. She speaks from personal experience for many of her points:

Families of children with new autism diagnoses can avoid cultish mistakes like ours if enough veteran parents reach out to them, and encourage them to choose logic over hype. We can help parents of newly diagnosed children with autism make careful choices and maximize limited resources. We can prevent them from taking their kids on expensive and emotionally-propelled journeys to nowhere.

Another excellent essay is “What Is Neurodiversity” by Mike Stanton. Mr. Stanton is one of those people I have never met but for whom I have an enormous respect. Mr. Stanton brings not only his views as a parent to the question, but some input from his child as well. “What is Neurodiversity” is an essay that could help a lot of people who have misconceptions about the topic as well as people new to the subject. Not to steal his thunder, but in case you don’t take the time to read the essay here is Mr. Stanton’s concluding paragraph:

I am a parent and a professional. I am not autistic and therefore would not presume to speak for autistic people. There are many who can speak for themselves. You can find a really good sample at the Autism Hub, a place where autistic people, parents and professionals meet with no distinction and anyone is welcome providing you share our respect for the condition of being autistic. We seek no fundamental alteration to this state of being but we do seek to intervene sometimes should the situation require it. And when we do intervene we should remember the words of a very wise person with autism, my son.

My autism is not a problem. It creates problems. But it is not going to go away. I want help with my problems not with who I am. I want you to offer support but do not try and change me into someone else.

Autistic Advocacy Group Condemns Presidential Appointment of Anti-Vaccine Activist Peter Bell

12 Jan

Peter Bell of Autism Speaks has been appointed to the President’s Committee for People with Intellectual Disabilities. As I read about the appointment I felt that there would be some reaction. Perhaps even a strong reaction. And, as you will see, I was correct. The Autistic Self Advocacy Network (ASAN) has issued a press release condemning the appointment.

Here is the press release:

FOR IMMEDIATE RELEASE

PRESS CONTACT:
Melody Latimer
Autistic Self Advocacy Network
Phone: 202-630-7477
mlatimer@autisticadvocacy.org

AUTISTIC ADVOCACY GROUP CONDEMNS PRESIDENTIAL APPOINTMENT OF ANTI-VACCINE ACTIVIST PETER BELL

Recent appointee Peter Bell has a long history of supporting fringe, anti-vaccine positions widely discredited in the scientific community

Washington, DC – January 12, 2012 – The Autistic Self Advocacy Network, the nation’s leading advocacy group run by and for Autistic adults, today expressed concern and disappointment over President Obama’s announcement Tuesday of his intent to appoint anti-vaccine activist Peter H. Bell as a member of the President’s Committee for People with Intellectual Disabilities.

“Bell’s appointment shows such contrast to the forward motion the Obama administration has shown in the areas of autism and disability as a whole,” said Melody Latimer, ASAN Director of Community Engagement and an autistic parent of autistic children herself.

Bell, Executive Vice President of Programs at Autism Speaks, has a long history of supporting anti-vaccination related causes, dating back to his time as President and CEO of Cure Autism Now, which merged with Autism Speaks in 2007. Despite wide ranging scientific evidence to the contrary, Bell and others in the anti-vaccine movement have long maintained the existence of a link, a position viewed as irresponsible by many public health advocates.

“The link between Autism and vaccines has long been discredited, and so an appointment placing an anti-vaccine leader in a position to influence a greater audience and re-open the issue is disappointing and ill-advised. We respect and appreciate the Obama Administration’s commitment to autism issues, but hope they will vet their appointees more carefully going forward,” Latimer noted.

Autism Speaks, Bell’s employer, has a checkered and controversial history. In 2009, Autism Speaks lashed out at the Department of Health and Human Services for refusing to incorporate research objectives connecting autism to vaccines in the Inter-Agency Autism Coordinating Committee’s Strategic Plan for Autism Research. In response to Autism Speaks’ disconnect from mainstream science on this question, several senior executives resigned from the organization in protest.

Autism Speaks has also been viewed with substantial controversy by Autistic people themselves, in large part due to the organization’s failure to meaningfully include individuals with the disability on their board of directors or in more than token roles in their senior leadership. Other criticisms of the organization include the low percentage of funds Autism Speaks invests in services, abnormally high executive salaries and what many have interpreted as deeply offensive advertising utilizing fear and pity to raise money. In 2009, the organization debuted its much-ridiculed video “I Am Autism” at the United Nations in New York City, presenting autism as an anthropomorphic force aiming to steal children. After widespread protests from Autistic adults across the country and criticisms from other disability organizations, Autism Speaks eventually pulled the promotional film.

The Autistic Self Advocacy Network (ASAN) is the nation’s leading advocacy organization run entirely by and for Autistic adults and youth. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. The organization’s activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of Autistic cultural activities and other opportunities for Autistic people to engage with others on the spectrum.

Brian Deer responds to David Lewis’ complaint

10 Jan

Much attention has been focused on Andrew Wakefield again recently. This follows Mr. Wakefield’s lawsuit against Brian Deer, Fiona Godlee and the British Medical Journal (BMJ). Also, a lengthy complaint authored by David Lewis was made public, detailing his views about the allegations of fraud levied against Mr. Wakefield by the BMJ.

The two are not directly related as Mr. Lewis’ complaint fails to address many of the issues raised by the BMJ in their articles alleging fraud. That said, If one pokes around Mr. Deer’s website, one will eventually stumble upon this page: David L Lewis: indignant abuse as complaints turn to nothing. There is an introduction to the subject including Mr. Deer’s interactions with Mr. Lewis followed by a point by point response to Mr. Lewis’ complaint. For anyone who may be thinking that Mr. Deer is intimidated by the complaint I encourage you to read the response. It is very much in the style of Brian Deer. For example

DAVID L LEWIS: “My report, which I have submitted to UCL, UKRIO and HEFCE, includes 72 emails exchanged between me and the BMJ’s editors.”

DEER: I offer the recipients at UCL, UKRIO and HEFCE my sympathy.

Aside from such dismissive statements, Mr. Deer takes on the many (often repetitive) claims by Mr. Lewis directly. Mr. Lewis’ complaint and main thesis in his rapid response to the BMJ focus on non-specific colitis as used in the Lancet paper: the histology grading sheets of Dr. Dillhon somehow prove that there was no fraud. It is a confusing argument because it doesn’t address the many issues raised by Mr. Deer and the BMJ.

Per Mr. Deer in his introduction:

These biopsy assessments, however, weren’t the basis upon which, in January 2011, the BMJ concluded that Wakefield’s MMR work was “an elaborate fraud”. The evidence we presented rested firmly on the GMC panel’s findings of research dishonesty, and was overwhelmingly related to Wakefield’s activities with regard to the admission of patients to the study, as well as the purported clinical histories and findings which lay behind a claim by Wakefield of a 14-day temporal link between the administration of MMR and the first “behavioural symptoms” of autism. We say this purported link was fraudulent.

Later, in response to Mr. Lewis’ claim:

DAVID L LEWIS: “… alleged that Andrew Wakefield fabricated the diagnosis of colitis in a 1998 Lancet study involving 12 children with autistic spectrum disorder (ASD).”

Mr. Deer responds:

DEER: At the core of our problems in dealing with Lewis is that nowhere was such an allegation made in the BMJ. He repeatedly identifies my feature “Autistic enterocolitis under the microscope”, published in April 2010, but this simply doesn’t make such an allegation. Plain reading would make this clear.

Not only can I find no foundation for this fundamental of Lewis’s complaint (and I think I’d remember forming any view at that time that the histopathology reporting in the Lancet was fraudulent, as distinct from, say, wrong, misleading or incompetent), we consulted legal counsel, before and after publication, and expert peer-reviewers. We remain unable to identify any text inferring Wakefield’s intent with regard to histology reporting. I’ve similarly asked Nature to identify any such text, and they too have failed

Mr. Lewis has taken issue with the fact that the BMJ did not print his rapid response exactly as submitted:

DAVID L LEWIS: “To support their new fraud theory, Godlee rewrote my Rapid Response, removing any evidence that undermined their allegations against Wakefield and others.”

DEER: Lewis’s rapid response was extensively re-written because it was false and defamatory. Legal advice was taken. Two peer reviewers rejected the submitted text. No changes had any effect in supporting any “fraud theory”, whether new or otherwise. Lewis approved the published text.

In hosting the words of Mr. Lewis, the BMJ would itself be responsible in part for any defamatory language included. This is the way of the law in the U.K..

In my opinion, the Mr. Lewis’ arguments are a side show of the the Wakefield saga (Yes, in my view Mr. Wakefield is a major side show in itself). They don’t address the substance of the claims of fraud put forth by the BMJ.

Navigating Love and Autism

9 Jan

If you haven’t already read it, Navigating Love and Autism, is worth your time. It is an article by Amy Harmon of the New York Times.

When I first saw the pictures from the article I though, “Hey, I know these guys!” It took me a minute to realize I know them from the series “Autism Talk TV” (the best TV on TV) with Alex Plank (if you don’t know Alex Plank, maybe you know his site: Wrong Planet)

I’ve been hoping to get the time to do a good piece on the article. In my delay, Seth Mnookin has done better than I could. Mr. Mnookin’s first piece is The New York Times’s incredible piece on the lives and loves of two adults with Aspergers” and the second is “SciWriteLabs 7.1: The New York Times’s Amy Harmon on neurodiversity and writing about autism is an interview with the author.

If you are a parent and your reaction is, “those aren’t the experiences of my kid”, I’d encourage you to check it out.

Besides, how can you stay away from a New York Times article with the following correction:

Correction: December 30, 2011

An article on Monday about Jack Robison and Kirsten Lindsmith, two college students with Asperger syndrome who are navigating the perils of an intimate relationship, misidentified the character from the animated children’s TV show “My Little Pony” that Ms. Lindsmith said she visualized to cheer herself up. It is Twilight Sparkle, the nerdy intellectual, not Fluttershy, the kind animal lover.

Around the blogosphere January 8 2012

8 Jan

Or, at least, a small fraction of it. There are times when I have to remind myself to get out and read more. Not papers, not news, but blogs. I don’t know why I have to remind myself. There is so much good stuff out there.

In no particular order, and for no other reason than these stuck in my mind for sometimes long periods of time, here are some blog posts and bloggers I’ve been reading:

When I first came into the online autism discussions one of my favorite writers was Jeanette (Mom26children). As you can gather, she has six children. Of those, 5 are autistic and she’s seen the breadth of the spectrum in them. The last post on her blog is from May, but it is a great one: Age (s) of Autism…. I Couldn’t Resist 🙂 . She tells us that two of her kids, kids who had major challenges as young children, no longer meet the criteria for special education. She credits her kids and the people who worked with them.

Emily Willingham is part of the Thinking Person’s Guide team. She has a Ph.D. in biology. That’s really only a starting point. She has the research background and, much more, repeated shows that she has science chops to delve into research papers on autism (as journal editor, this shouldn’t be surprising). In a recent post (On autism, sAPPa, immunity, and subsets ) she deconstructs the publicity around a recent paper. It’s a classic problem where the paper and the press release oversell the relevance to autism. This problem isn’t restricted to autism, by the way. I see it a lot where people try to link their work to some hot topic.

The Crowded Autism Web is a recent post from The Autistic Me. As the writer points out, The Autistic Me has been around for several years but 2012 is a year for expanding readership. Also, you can follow The Autistic Me on Twitter.

Shannon Rosa is another member of the Thinking Person’s Guide team. One thing TPGA does that I really wish I could do well is interviews. One example is Interview: Christa Dahlstrom of Flummox and Friends, where Ms. Rosa interviews the creator of a live-action show which looks to explore social interactions. “[A] little bit Pee Wee’s Playhouse, mixed with The Big Bang Theory, with a little old-school Electric Company thrown in.

http://www.kickstarter.com/projects/2055453201/flummox-and-friends/widget/video.html

The Autism Vaccine Controversy and the Need for Responsible Science Journalism

7 Jan

The Huffington Post has a new section on science. One of the first articles discusses the “Autism Vaccine Controversy”. In The Autism Vaccine Controversy and the Need for Responsible Science Journalism, Seth Mnookin starts out:

Earlier this week, The Panic Virus, my book on the controversy over vaccines and autism, was released in paperback. While there haven’t been many scientific advances in this particular issue since the hardcover edition was published — the evidence supporting vaccines’ paramount place in public health efforts and the total lack of corroboration supporting a causal connection between vaccines and autism remain as strong today as they were a year ago — there have been new developments in the story. Their coverage highlights an enduring passion of mine: The need for reliable, responsible science journalism.

Yes, Seth Mnookin, author of The Panic Virus, is writing for the Huffington Post, a site which has contributed greatly to misinformation about vaccines and autism. The Huffington Post has been home to David Kirby (who was a major promoter of the mercury/autism concept) as well as welcoming input from Jenny McCarthy and Jim Carrey, to name but a few of the poor choices for writers the Post engaged.

On PLoS blogs, Mr. Mnookin announced this new gig with Has the Huffington Post embraced science & closed the door on anti-vaccine quackery? We can hope. I wouldn’t place any bets on it though.

No Evidence of Murine Leukemia Virus-Related Viruses in Live Attenuated Human Vaccines

6 Jan

There has been much discussion of XMRV, Xenotropic murine leukemia virus-related virus, here at Left Brain/Right Brain and elsewhere in the past few months. The reason for the discussion here is the (now shown to be false) idea that XMRV is implicated in autism causation. Two papers have addressed this question and found no evidence of a link. XMRV came to prominence as a possible candidate in causing chronic fatigue syndrome (CFS). Multiple papers have found no evidence of a link between XMRV and CFS (fan example is discussed here) and the original paper on the topic was withdrawn by editors of the journal Science after it became clear that those results were suspect.

The idea that autism and XMRV was promoted by David Kirby, whose efforts also strongly promoted the debunked autism-epidemic-caused-by-mercury idea. Mr. Kirby’s article at the Huffington Post was Is Autism Associated with A Viral Infection?. In this he quoted CFS/XMRV researcher Judy Mikovits:

And then Dr. Mikovits dropped a bombshell that is sure to spark controversy.

“On that note, if I might speculate a little bit,” she said, “This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes — the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That’s its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you’ve now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency.”

Mr. Kirby went on to write:

So there you have it – a possible explanation of regressive autism in a significant number of cases associated with immune system deregulation triggered by vaccination.

Of course, much more work is needed to nail down the exact significance of such an association. For example, is the virus implicated in the cause of autism, or do children harbor the virus as a result of autism?

Yes, Ms. Mikovits and David Kirby were proposing a possible link between autism, XMRV and (of course) vaccines.

That was October 2009. Fast forward to today, two years later and we see

A) Neither Ms. Mikovits nor anyone else has published the data supposedly linking XMRV and autism

B) Two studies have looked for evidence (and failed to find any) of a link between XMRV and autism,

Lack of infection with XMRV or other MLV-related viruses in blood, post-mortem brains and paternal gametes of autistic individuals.

PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism.

C) Evidence has arisen that much of the data linking XMRV to CFS is faulty.

Studies on XMRV are still ongoing. If experience from the vaccine-autism-epidemic idea tell us anything, the idea that XMRV causes CFS and/or autism will die slowly and even more data are needed.

To that end, a recent study explored whether XMRV is a contaminant in live virus vaccines. (note that in other vaccines, the XMRV is likely as dead as the other constituents of the vaccine). You can tell the result from the title: No Evidence of Murine Leukemia Virus-Related Viruses in Live Attenuated Human Vaccines.

Background

The association of xenotropic murine leukemia virus (MLV)-related virus (XMRV) in prostate cancer and chronic fatigue syndrome reported in previous studies remains controversial as these results have been questioned by recent data. Nonetheless, concerns have been raised regarding contamination of human vaccines as a possible source of introduction of XMRV and MLV into human populations. To address this possibility, we tested eight live attenuated human vaccines using generic PCR for XMRV and MLV sequences. Viral metagenomics using deep sequencing was also done to identify the possibility of other adventitious agents.

Results

All eight live attenuated vaccines, including Japanese encephalitis virus (JEV) (SA-14-14-2), varicella (Varivax), measles, mumps, and rubella (MMR-II), measles (Attenuvax), rubella (Meruvax-II), rotavirus (Rotateq and Rotarix), and yellow fever virus were negative for XMRV and highly related MLV sequences. However, residual hamster DNA, but not RNA, containing novel endogenous gammaretrovirus sequences was detected in the JEV vaccine using PCR. Metagenomics analysis did not detect any adventitious viral sequences of public health concern. Intracisternal A particle sequences closest to those present in Syrian hamsters and not mice were also detected in the JEV SA-14-14-2 vaccine. Combined, these results are consistent with the production of the JEV vaccine in Syrian hamster cells.

Conclusions

We found no evidence of XMRV and MLV in eight live attenuated human vaccines further supporting the safety of these vaccines. Our findings suggest that vaccines are an unlikely source of XMRV and MLV exposure in humans and are consistent with the mounting evidence on the absence of these viruses in humans.

Yes, there is no evidence of XMRV in vaccines. This is rather anticlimactic given the evidence already in place that XMRV is not linked to autism, and the fact that the XMRV/CFS link is already tenuous at best.

The blogger erv has done the most thorough job following the XMRV study out there, including discussing the paper above. Others have taken up where David Kirby left off and promoted the idea that XMRV and autism are linked, and that vaccines are a possible part of that link. I would hope that those people would see the value in letting their readers know about this paper (and others, and the retractions).

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