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Autism Science Foundation’s interviews with IMFAR researchers: David Mandell

8 Jul

INSAR, the International Society for Autism Research hosts the the largest autism research conference: IMFAR, the International Meeting for Autism Research. 1700 people attended, largely from the research community. The program book has nearly 50 pages of researchers. It’s big.

This year’s conference was held in Philadelphia in the United States. The people heading the organization of this year’s conference were Program Chairs David Mandell and Manny DiCicco-Bloom and Meeting Chairs, Jennifer Pinto-Martin and Susan Levy.

The Autism Science Foundation has a strong presence at the conference. They were sponsors of the conference and they held luncheons for the graduates students which the ASF is supporting. In addition, the ASF sponsored a number of stakeholders to attend the conference. One of these stakeholders, D’oC, blogged about the conference here on LeftBrainRightBrain.

The Autism Science Foundation took the opportunity to interview a number of the researchers at IMFAR. Those interviews are now up on YouTube. I thought I would blog some of these interviews. Given that Prof. Mandell was one of the Program Chairs and gave an overview of the conference, I decided to start with his interview:

Prof. Mandell discusses the new studies that are coming out. Amongst the subjects: how there is a shift to groups crossing regular boundaries of genetics, biology and behavior are related; how treatment research is moving beyond the randomized control trial methods targeting all autistic types to targeting subgroups; and how there is much research on young autistics in school settings. Groups are moving beyond the early genetics studies which merely identify “hot spots” in the genes to trying understand what the genes do. He gives the example where groups of autistics with the same genetic differences give similar results in how their brains work, as detected through functional MRI.

Science based autism charities?

1 Jun

Science Based Medicine is a blog devoted to, well, discussing science based medicine. The subject of autism comes up fairly regularly, usually in the context of the vaccine/autism discussion. A recent SBM piece by Dr. David Gorski, Nine differences between “us and them,” nine straw men burning, caught my eye.

Dr. Gorski comments:

Alison Singer (@alisonsinger), President of the Autism Science Foundation, arguably the only truly science-based autism charity in existence at the moment,

I was about to write a comment when I decided that a blog post was more in order.

The Autism Science Foundation is a science-based autism charity. But, is it really arguable that there are no other truly science-based autism charities?

The answer (as you can likely guess) is “no”. Two names come to mind readily, but I don’t suggest this is an exhaustive list.

[Correction–it has been pointed out to me that both the foundations below do not accept public donations. Thus, they are not “charities”. That would leave the Autism Science Foundation as the one major science based charity]

Who is the largest autism charity? A lot depends on how you define size, but let’s just consider money. Who has the most and who spends the most? If you are thinking Autism Speaks, you are incorrect. The answer is the Simons Foundation.

The Simons Foundation has two main focuses, Math&Science and Autism. They run one of the better blogs on autism science. One of the recent members added to the Interagency Autism Coordinating Committee is from Simons. Most of the autism charities you might know of are working on the basis of taking money in and turning around and spending that money. That is part of the reason why you know about them, they have to keep their name in the public’s eye to get donations. Simons works from an endowment, a foundation. A big one. As of 2008, Simons had assets worth over US$1 billion ($1.108B if you want details). From this endowment, they fund research. After the U.S. Government, they are likely the largest source of autism research funding in the world.

If you check the Simons Foundation website and blog, you will see a decidedly science oriented organization.

The Nancy Laurie Marks Foundation also supports a number of science projects, as well as some advocacy efforts. The Nancy Laurie Marks Foundation was working from an endowment of nearly $US90 million in 2008.

I will highlight two paragraphs from the Marks Foundation “about” page:

The principal goal of the scientific program is to achieve a deeper understanding of the biological basis of autism, focusing on genetics, synaptic chemistry, the neurobiology of communication, systems biology and the physiology of movement. The Foundation funds peer-reviewed research, the development of collaborative investigator projects, and research fellowship programs. Through sponsorship of scientific conferences, symposia and workshops, the Foundation seeks to encourage innovation and provide a springboard to generate new avenues of shared inquiry.

and

The NLM Family Foundation actively seeks partnerships with other grantmakers sharing its goals and fosters collaborations between investigators and organizations that have a direct interest in developmental disabilities. Of particular interest are projects which challenge stereotypes that stand in the way of people with autism realizing their potential, such as the misconception that people with autism are invariably mentally retarded and have minimal interest in social interaction. Challenging such stereotypes will lead to a greater public understanding of autism and widen the scope of scientific inquiry.

The Nancy Laurie Marks Foundation recently donated US$29 million to Massachusetts General Hospital to start a program focusing on the needs of autistic adults.

I am regularly taken to task on this blog for focusing too much attention on issues which are ever increasingly less relevant to the autism communities. I think Dr. Gorski’s comment is not a failure on his part, but, rather, on mine. While I have discussed both the Simons and Marks foundations, it is well worth the time to discuss them again. Any real change privately funded research may bring to the lives of autistics will come from groups such as these.

Blogging IMFAR: Wrap-Up Notes

23 May

One of the things I wanted to do in blogging about IMFAR, was try to provide a bit of a wrap-up of my experience there in Philadelphia this year. Since it was my first time attending an IMFAR, and I really had no idea what to expect ahead of time, I figured it might be useful to jot down some overall notes retrospectively.

First and foremost, IMAR is a scientific meeting. There is no shortage of introduction to what is out there in current autism research. This began with Wednesday’s pre-meeting press conference. It was there, that the press would learn about several selected abstracts (apparently thought to be worthy of media attention): the University of Rochester’s (Dr. Susan Hyman) negative GFCF study results, the Kennedy Krieger Institute’s (Dr. Brian Freedman) debunking of the 80% divorce rate claim, and others such as, landmark genetic studies, infant sleep fMRI as potential early diagnostic tool in the future, and social/educational intervention strategies that demonstrate the importance of peer involvement. Each of the study authors presenting their work to the press, spent about 5-10 minutes giving the highlights and taking a few questions, but in reality, each presentation was barely a thumbnail sketch of what the research was about and perhaps a minute of discussion about potential real world significance of the findings. You can read more about the items that caught my attention in the press conference at Blogging IMFAR: Opening Press Conference and GFCF Diet Trial Results and Blogging IMFAR: Autism And Divorce Debunked, Among Others.

Following the day of the press conference, IMFAR was off and running, with full daily schedules of presentation sessions, and poster sessions running the majority of the day (one floor below where the presentation sessions were taking place). On one hand, I suppose the science presentations could seem fairly frustrating to many. Like the press conference, the oral sessions presentations are given on a fairly tight schedule, and often contain little more than an introduction, a few minutes of methodology discussion, a quick look at statistical results, and time for one or two questions – then it’s on to the next, which might even be something only very loosely related at times.

For a typical parent, I think it’s quite possible they’d find the whole format approaching “tedious-to-learning” much of the time, with only an occasionally very interesting or very well-presented piece of research. Don’t get me wrong, I wouldn’t want detract from the likely importance of researchers having an open venue to share ideas with each other, but for me, there are only so many shotgun presentations you can listen to, or posters you can look at in one day.

On the other hand, IMFAR is a place where it seems ridiculously easy to get the big picture quickly, and even talk with expert researchers in the field of autism science if you are so inclined. It’s hard not to catch the what of what’s currently taking place in autism research world, as it’s everywhere – in the program, in the posters, and in the discussions. As an example, if one wanted to learn what’s taking place in autism research that’s using brain imaging, whether looking at language response and differences in infant siblings of autistic children, or looking at the potential impact of some specific intervention on brain funtion, researchers studying just those kinds of things are at IMFAR presenting and discussing their research. From what I saw, one can attend the relevant presentations, and then visit with researchers later on – I saw this occur on several occasions, with researchers like Eric Courchesne (University of California, San Diego). “Accessibile” is word that is probably a pretty good way to sum up my general thoughts on the science at IMFAR. while the format can seem very dry, especially to someone like myself (who didn’t arrive with a specific scientific field of interest that I was dying to scout out), the science and the researchers do seem really accessible.

Which brings me to what I thought was an important impression of IMFAR. The scientists really do seem accessible – willing to spend time for those with quesitons, and willing to provide explanation and lay translation where appropriate. On the first full day at IMFAR, I have to admit that I really didn’t know where to start. How was I ever going to explore all the science, and then distill that down to something digestible in size, yet explanatory of the trends in autism science? I was so fortunate to have the opportunity to meet with Dr. David Mandell. Besides being a local Philadelphia researcher, he was the Scientific Program Chair for IMFAR this year. And I could not be more appreciative of the time he gave to me (and LBRB readers), in sitting down to explain the trends in autism research at IMFAR – and he’s probably one of the best possible people to see and understand those trends, as he read every one of nearly a thousand abstracts accepted at IMFAR this year. If you want the inside scoop on the science at IMFAR, as well as an opportunity to simply get to know the thoughtful Dr. Mandell a little better, it can be found at Blogging IMFAR: Excerpts Of An Interview With David Mandell, ScD.

Speaking of thoughtful autism researchers, while at IMFAR, I literally ran into (interrupting his cell phone conversation while on an escalator) Dr. Roy Richard Grinker, professor of anthropology and human sciences, autism epdemiologist, author of the book “Unstrange Minds”, and wouldn’t you know it, a jazz pianist and marathoner too! Dr. Grinker was gracious enough to sit down with me for coffee, and share a little more about why he was at IMFAR with LBRB readers. You can read the interview at Blogging IMFAR: Meet Roy Richard Grinker.

At this point in my notes, we’ve arrived at midday Friday. And it as midday Friday when I see what I consider the most interesting science. As a recipient of a travel/attendance grant (that partially funded my trip to IMFAR) from the Autism Science Foundation, I was also invited to attend their “Science and Sandwiches” luncheon. It might be tempting to think I was attracted simply for the free food, but the sad truth was, that I had eaten a very late breakfast and wasn’t even hungry at the time of the luncheon. During the “Science and Sandwiches” lunch, each of 6 pre-doctoral students presented an overview of their research plans. These are pre-doctoral students who applied, and in turn, the Autism Science Foundation selected, to fund their research directly. They all seemed fairly interesting and unique, ranging from researching social conversation rules among ASD kids and infant emotions measurement, to very specific mouse model genetics/pharmacological experiments, to epidemiology. Yes, epidemiology. It might seem surprising that a young autism science advocacy org like ASF, or anyone for that matter, would fund epidemiology. I can’t help but think that field is already maturing to some degree in the U.S. I thought to myself, other than potential minority underrepresenation, what kind of breakthroughs in scientific understanding could we really get from epidemiology in the U.S.? I mean, we already know that we’re probably finally very close to what is a pretty stable 1 in 100. What else is there?

That’s when we were introduced to Matthew Maenner. Maenner is a pre-doctoral student of the University of Wisconsin, Madison (working under the mentorship of Dr. Maureen Durkin), who proposed, what to me, looks like a very interesting take on autism epidemiology with his research titled, “Phenotypic Heterogeneity and Early Identification of ASD in the United States”. He asked the luncheon group (of what looked like about 60 attendees), about how many possible combinations of the individual DSM diagnostic criterion can result in an ASD diagnosis. You know, if one looks at all the possible permutations of: “(I) A total of six (or more) items from (A), (B), and (C ), with at least two from (A), and one each from (B) and (C )” and the criteria for Asperger’s and PDD-NOS from the DSM IV-R, how many many combinations are there? It turns out there are 616 (I think I wrote that down correctly). He had a fascinating cloud-graph-type illustration of this (there’s probably a good technical term for this), that looked like a spiral galaxy – the point being that diagnostic criteria steer categorization to a shared core, but at the same time, there are numerous arms extending in several directions. He explained how he intended to look at the CDC’s ADDM data to begin to answer questions about the basis for the landscape of real world diagnoses compared to the actual possibilities described within the diagnostic criteria. Like a fool, I assumed that the ADDM data, like much of published autism epidemiology, tended to be focused on fairly simple prevalence, even dichotomous in nature (Autistic – yes/no, Asperger’s – yes/no, PDD-NOS – yes/no, X percent of all ASD’s = Autistic Disorder, etc.). Also, like a fool, I asked about him about this with something to the effect of, “In assuming the CDC’s ADDM data doesn’t have the resolution to go beyond diagnosis results, and into the individual combinations of criteria that result in those diagnoses, how are you going to even look at answering that question your research is about?”. He politely responds, explaining that, in fact, the CDC’s ADDM data does have this resolution. My assumption is way wrong, and this is an “Aha!” moment for me. We have tons of what is probably pretty good data available from the CDC, and it seems, to me, that no one has looked at it in quite this way before now.

So here’s my take on this ASF-funded doctoral student’s proposed research – he may be digging into something much more descriptive and potentially useful to the biological and educational sciences with respect to autism spectrum disorders, than has been done so previously (that I am aware of). If there’s epidemiology that can quantitatively describe the distribution of characteristics that result in ASD diagnoses, biological, and even educational research may have a leg up on being meaningful. As an example, suppose that this epidemiology determines that a certain percentage of ASD diagnoses include selection of the C – 4. “persistent preoccupation with parts of objects”. With real numbers, biological research may have a starting point to evaluate associations of differences in brain structure or function with respect to this characteristic. With real numbers, perhaps the success of specific educational strategies (that take advantage of this specific knowledge) can be meaningfully evaluated with more individualized approaches. Here’s the bottom line as I see it: Matthew Maenner is taking a solid step towards building understanding of the variation that occurs in autism spectrum disorders. It’s possible, if not likely, that his work could contribute to entirely new and much more individualized directions in other autism research. The days of any notion of singularity in etiologic origin of autism are long gone (in favor of complex combinations of numerous factors). Here’s a researcher who, in my opinion, understands that and will take steps towards building real understanding by looking at that distribution of variation. It wouldn’t surprise me in the least if “Matthew Maenner” is a name associated with the more interesting and useful autism epidemiology in the future.

So there you have it. That was my couple of days at IMFAR: an early look at some of the “newsworthy” science, an opportunity to learn much more about current trends in autism research from a hard-working scientist (the IMFAR Scientific Program Chair, Dr. David Mandell), a chance to sit down and chat with a very thoughtful researcher and author (Dr. Roy Richard Grinker), as well as first-hand look at some new research direction in graduate programs. All in all, it was a pretty interesting couple of days.

I’d also like to take just a minute and thank the Autism Science Foundation for partially, yet generously funding my travel (as a parent who blogs) to IMFAR. I had complete freedom to check out and write about whatever I wanted to, and it wouldn’t have been possible without their financial assistance.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Finding common ground at the IACC

1 May

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

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

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

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

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

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

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

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

Interagency Autism Coordinating Committee welcomes new members

30 Apr

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

The current public members are:

Lee Grossman
President and CEO
Autism Society

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

Christine M. McKee, J.D.

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

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

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

Here is the announcement for the new members

Secretary Sebelius Announces New Members of the Interagency Autism Coordinating Committee

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

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

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

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

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

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

New Members of the Interagency Autism Coordinating Committee

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

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

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

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

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

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

Blogging about IMFAR

12 Apr

INSAR‘s annual International Meeting For Autism Research (IMFAR) is convening in Philadelphia this May (May 20-22).

Thanks in part to a generous travel grant from the Autism Science Foundation, I’ll have the opportunity to attend – and of course I’ll be blogging about it here at LBRB.

For the most part, I plan to write about research, projects, researchers themselves, or talks that I find interesting and attain sufficient understanding, but I’ll also be sharing a little with LBRB readers, about the overall IMFAR experience upon my return. I’m also looking forward to attending the Autism Science Foundation’s “Science and Sandwiches” where plans for this IMFAR lunchtime edition include presentations “from six ASF-funded pre-doctoral students who will describe their new research projects”.

I’ve always been pleasantly surprised by, and appreciative of scientists in general. I’ve had the opportunity to exchange ideas with many over the last few years while writing articles at both LBRB, and Autism Street, and even had the benefit of informal peer review (for some of the more scientifically involved articles) prior to publishing.

If the opportunity arises to meet and talk with individual researchers, I also hope to write some brief “Meet the Researchers” type pieces for those who might be able to take 10 minutes for a few questions. Hopefully this can bring a certain aspect of personal conversation with some of the scientists who’ll attend this year to readers at LBRB.

As more details about the planned presentations (and even posters) become available, be sure to let me know about any you (dear readers) think look particulary interesting. Simply leave a comment, or drop me a note at:

autism blogger at gmail (remove the spaces, and use the symbol for at).

Autism Science Foundation offering places at IMFAR 2010

11 Feb

Funds will enable parents and other stakeholders to attend the leading autism research conference and share what they’ve learned with the broader autism community.

The Autism Science Foundation today announced that is offering a limited number of grants to parents of children with autism and other stakeholders to support attendance at the International Meeting for Autism Research (IMFAR), to be held in Philadelphia, May 20-22, 2010. Awards of up to $1000 can be used to cover registration, travel, accommodations, meals and other directly related expenses, including childcare.

After the conference, grant recipients will be expected to share what they’ve learned with families in their local communities and/or online.

IMFAR is an annual scientific meeting, convened each spring, to promote, exchange and disseminate the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to give back directly to the autism community in a research-focused way,” said Alison Singer, president of the Autism Science Foundation. “The award recipients will bring critical new research information to their communities, increasing the speed with which the latest data are shared with the broader autism community.”

“These scholarships are a wonderful opportunity to bring more stakeholders to the IMFAR and improve dissemination of the latest research findings presented at the conference,” said Dr. David Amaral, president of INSAR and director of research at the University of California at Davis M.I.N.D. Institute.

To apply, send a letter to grantsATautismsciencefoundationDOTorg describing why you want to attend IMFAR and, most importantly, explaining how you would share what you learn there 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 subject line please write: IMFAR Grant. Letters must be received by March 15, 2010. Recipients will be announced in April.

Autism Science Foundation announces 2010 Doctoral Training Award Recipients

10 Feb

The Autism Science Foundation has awarded six student/mentor teams grants to further research.

The teams and projects are listed below:

Sarita Austin/Dr. Rhea Paul; Yale Child Study Center:
Enhancing Understanding and Use of Conversational Rules in School-Aged Speakers with Autism Spectrum Disorder

Karen Burner/Dr. Sara Jane Webb; University of Washington, Seattle:
Observational and Electrophysiological Assessments of Temperament in Infants at Risk for Autism Spectrum Disorders

Rhonda Charles/Dr. Joseph Buxbaum; Mount Sinai School of Medicine:
A Preclinical Model for Determining the Role of AVPR1A in Autism Spectrum Disorders

Sarah Hannigen/Dr. Mark Strauss; University of Pittsburgh:
Defining High and Low Risk Expression of Emotion in Infants at Risk for Autism

Matthew Maenner/Dr. Maureen Durkin; University of Wisconsin, Madison:
Phenotypic Heterogeneity and Early Identification of ASD in the United States

Michael Sidorov/Dr. Mark Bear; MIT:
Investigation of Postnatal Drug Intervention’s Potential in Rescuing the Symptoms of Fragile X Syndrome in Adult Mice

The awards total $180,000.

Awards such as these serve a dual purpose. Yes, they get specific research projects support. More important in the long run is helping to recruit and keep good researchers studying autism.

Autism Speaks misleads the public on the IACC’s stance on vaccine research

12 Nov

Autism Speaks recently announced that the Interagency Autism Coordinating Committee (IACC) included vaccine research studies into the objectives of the Strategic Plan. I’m sure many people who read their press release are thinking that the vaccine-autism research will definitely be funded. But, is this accurate? The answer is no.

According to the press release and the Autism Speaks website:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

I’ve already noted that the statement Autism Speaks gave before the IACC was incorrect. Vaccine research was not a “clear directive” of the Combating Autism Act. You can check for yourself.

Alison Singer of the Autism Science Foundation, and member of the IACC, has a statement on the ASF blog, Autism Science Foundation Agrees with Decision to Keep Vaccine Research Out of the IACC Autism Plan.

The ASF blog notes:

Autism Science Foundation President and Interagency Autism Coordinating Committee member Alison Singer joined her colleagues on the IACC in voting to eliminate references in the autism strategic plan that could imply that vaccines cause autism or that call for additional vaccine research. “Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science,” said Singer. In addition, the two research objectives proposed that specifically called for additional vaccine research were not approved.

Also:

Singer added that some groups seem to be misinterpreting the inclusion of the word “vaccines” in the list of examples of immune challenges as a mandate for vaccine research, and have issued misleading statements. “Based on the votes taken yesterday, the IACC was clear in its position about autism and vaccines. But if there is public confusion about this new research objective then I will try to make sure we clarify it at our next meeting,” Singer said. The IACC will continue its work on the plan at a meeting on December 11, 2009 with the goal of finalizing the revised plan by January, 2010.

The entire statement can be read on the Autism Science Foundation’s blog.

It appears that Autism Speaks is placing a fairly major spin on a single action taken by the IACC. Again from the ASF blog:

The IACC also voted unanimously to add a new objective to study whether or not there are certain subpopulations that are more susceptible to environmental exposures such as immune challenges (including naturally occurring infection, vaccines, and/or immune disorders).

Compare that to the Autism Speaks announcement:

IACC Includes Vaccine Research Objective In Strategic Plan For Autism Research
Autism Speaks is Encouraged by New Language Recommending Funding of Vaccine Research

Or, worse yet, the first line of their press release: “Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research”

As I noted above, I am very confident that many people reading the announcement are expecting autism-vaccine research to be funded.

But this isn’t a “vaccine research objective”. This isn’t calling for “vaccine research studies”.

What it is, is an objective that mentions vaccines. It is a very important distinction. Take a close look, the objective does not call specifically for a vaccine project to be funded. It doesn’t even call for immune challenges to be funded. These are just listed as possible examples.

This is a small example of why the IACC needs to be very careful in how and if they discuss vaccines. Groups such as Autism Speaks can act incredibly irresponsibly in spinning any statement including the word vaccines.

Apply for Autism Research Grant

23 Sep

The Autism Science Foundation announce their first RFA:

The Autism Science Foundation invites applications for its Doctoral Training Award from graduate and medical students interested in pursuing careers in basic and clinical scientific research relevant to autism spectrum disorders.

The proposed training must be scientifically linked to autism and may be broadened to include training in a closely related area of scientific research. Autism Science Foundation will consider for training purposes all areas of related basic and clinical research including but not limited to: human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders), neurobiology (anatomy, development, neuro-imaging), pharmacology, neuropathology, human genetics/genomics, immunology, molecular and cellular mechanisms, and studies employing model organisms and systems.

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