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IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool

12 Jul

The Office of Autism Research Coordination (OARC) released a web-based tool to explore research projects. One can search or browse. Data are included for both government funded and non-government funding agencies (such as NIH, Autism Speaks, Simons Foundation, Autism Science Foundation, etc.). One can browse by objectives in the IACC’s Strategic Plan (for example, here is a starting point for 2009 projects)

For example, one can search for how many projects used the term “nonverbal” (six in 2009, fifteen in 2010). One can browse by funding group, through Strategic Plan question or other ways. You can download results in pdf or spreadsheet format.

If you are interested in seeing what research is funded, and not funded, this is a good tool.

—
By Matt Carey

What is the IACC charged to do?

12 Jul

The Interagency Autism Coordinating Committee (IACC) is charged with certain responsibilities under the law. At the same time, the scope of the IACC is actually quite limited and often misunderstood. In my opinion, the word “coordinating” may be a bit of an overstatement as the committee does not control funding nor does it have the power to make policy or to initiate research.

Here are the responsibilities of the IACC, as well as some of the limitations of the IACC, from the IACC Charge Document.

Statutory Responsibilities of the IACC under the Combating Autism Act and
Combating Autism Reauthorization Act

The IACC was established to coordinate all efforts within the Department of Health and Human
Services concerning autism spectrum disorder and is required to:

Develop and annually update a strategic plan for ASD research, and submit the strategic plan
and annual updates to Congress.

Develop and annually update a summary of advances in ASD research.

Monitor federal activities with respect to ASD.

Make recommendations to the HHS Secretary regarding research or public participation in
decisions related to ASD.

Meet at least twice a year (full committee) and conduct meetings in public with time for public
participation (public comment).

The committee may establish subcommittees and convene workshop and conferences.

How has the IACC executed these responsibilities?

The IACC serves as a forum for coordination, communication and collaboration between Federal
agencies, private organizations and community stakeholders.

The IACC developed its first strategic plan in 2009 and updated it in 2010 and 2011 with the goal
of focusing and accelerating research. The plan was developed with public input and a focus on
community needs.

The IACC has issued an annual Summary of Advances in ASD Research document each year –
2007, 2008, 2009, 2010 and 2011.

The IACC issues a Portfolio Analysis Report to analyze Federal and private funding for research
and how funding aligns with priorities identified in the Strategic Plan.

The IACC/OARC are launching a public database to provide information on federal and private
funded research projects.

IACC members and guest speakers provide research and services program updates at each
meeting of the IACC.

The IACC/OARC issues special reports on ASD activities such as the IACC/OARC ASD Research
Publications Analysis.

The IACC has made recommendations to the HHS Secretary in the Strategic Plan and through
advisory letters.

The IACC gathers public input and information on emerging issues in the autism community
through written and oral public comments at meetings of the full IACC, town hall meetings,
workshops and formal requests for public comment; all meetings, including phone meetings, are
open to the public by phone, webcast and/or webinar.

The IACC provides information to the public through its activities (all open to the public), public
website, news updates, listserv and Twitter announcements.

What is the committee not required or authorized to do?

To fund research – the IACC does not have or control a research budget.

To implement research or services programs – programs can only be implemented by
government agencies and private organizations.

To set government policies – the IACC is an advisory body that can raise awareness and make
recommendations for development or adoption of policies, but only government agencies and
private organizations can set policies.

To force government agencies to fund specific research projects or set particular policies.

Many seem to think of the IACC as a funding agency, or an group which sets the research agenda. It is “an advisory body”.

In my opiion, it is an advisory body which people listen to. Most of the research projects proposed in the Strategic Plan have been funded (which is pretty good in these economic times). Researchers I have spoken with have respect for the IACC.

By Matt Carey
(I serve as a public member on the IACC but all opinions expressed here and elsewhere are my own)

Save the Date: July 10, 2012 – Meeting of the IACC

13 Jun

The first meeting of the Interagency Autism Coordinating Committee (IACC) will meet on July 10, 2012. Roughly one month from today. An announcement from the Office of Autism Research Coordination (OARC) is below.

Please save the date Tuesday, July 10, 2012 for the first meeting of the Interagency Autism Coordinating Committee (IACC) under the Combating Autism Reauthorization Act. OARC will post additional meeting details to the IACC website, http://iacc.hhs.gov/events/, as they become available in June and early July.

Members of the community may also be interested in the following updates:

· This year’s International Meeting for Autism Research (IMFAR) in took place in Toronto, Canada from May 16-19, 2012. Many members of the public and advocacy community participated, including several IACC members. OARC Acting Director, Dr. Susan Daniels, gave a presentation on behalf of the OARC/IACC and NIH at the meeting and the slides are posted on the IACC website at: http://iacc.hhs.gov/non-iacc-events/2012/slides_imfar_susan_daniels_051712.pdf. The presentation includes an update on the IACC, a preview of the data from OARC/IACC publications that will be released this summer, an update on the NIH Autism Centers of Excellence, and a challenge to the research community to embrace data sharing to advance autism research. The video clip from the presentation will be posted on the Non-IACC Meetings and Events web page as soon as it is available.

· On May 21, 2012, IACC Chairman, Dr. Thomas Insel published a blog highlighting the critical need for increased data sharing across scientific fields, including ASD research: “Time Matters – Why We Care So Much About Data Sharing.”

· On May 24, 2012, NIH, CDC and HRSA issued a news update about a newly published report based on data from the Survey of Pathways to Diagnosis and Services: http://www.nimh.nih.gov/science-news/2012/most-children-with-asd-diagnosed-after-age-5-use-multiple-services-and-medications.shtml.

· The American Psychiatric Association is accepting public comment until June 15, 2012 on proposed changes to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) . For more information, please see the APA website at: http://www.dsm5.org/Pages/Default.aspx.

We hope everyone has a safe and enjoyable holiday weekend.

Sincerely,

The Office of Autism Research Coordination

Note: I am one of the public members slated to be a part of the IACC.

The Autism Research Landscape: The IACC, Research Funding and Data Sharing

12 Jun

Susan Daniels, Ph.D., is Acting Director, Office of Autism Research Coordination at the U.S. National Institute of Mental Health, NIH. She spoke at IMFAR 2012 on The Autism Research Landscape: The IACC, Research Funding and Data Sharing (click for the power point slides).

Below are a few points that caught my eye. (the entire presentation caught my eye, but here are a few I will highlight!)

As this will be the first meeting under the reauthorized Combating Autism Act (or CARA), the membership has changed. The federal members are

Thomas Insel (NIMH, NIH)
James Battey (NIDCD, NIH)
Linda Birnbaum (NIEHS, NIH)
Coleen Boyle (CDC)
Francis Collins (NIH)
Denise Dougherty (AHRQ)
Tiffany Farchione (FDA)
Alan Guttmacher (NICHD, NIH)
Laura Kavanagh (HRSA)
Donna Kimbark (DoD)
Walter Koroshetz (NINDS, NIH)
John O’Brien (CMS)
Alexa Posny (Dept of Ed)
Sharon Lewis (Administration for Community Living)

Members in bold are new.

Public members are:

Idil Abdull (Parent, Somali American Autism Foundation)
James Ball (JB Autism Consulting)
Anshu Batra (Parent & Developmental Pediatrician)
Noah Britton (Self advocate)
Sally Burton-Hoyle (Family member, Eastern Michigan University)
Matthew Carey (Parent)
Dennis Choi (Simons Foundation)
Jose Cordero (University of Puerto Rico)
Jan Crandy (Parent, Nevada State Autism Assistance Program)
Geraldine Dawson (Autism Speaks)
David Mandell (University of Pennsylvania)
Lyn Redwood (Parent, Coalition for SafeMinds)
Scott Michael Robertson (Self advocate, Autistic Self Advocacy Network)
John Elder Robison (Self advocate & Author)
Alison Tepper Singer (Parent, Autism Science Foundation)

Note that I am in the list above. Further note that I do not represent the IACC here or elsewhere.

The responsibilities of the IACC are:
1) Advise HHS’ Secretary Sebelius

2)Establish autism research priorities
IACC Strategic Plan for ASD Research

3) Monitor Federal activities and analyze research trends
IACC ASD Research Portfolio Analysis

4) Communicate advances in the field
IACC Summary of Advances in ASD Research

Autism research is over $400 million per year in the U.S.. Of that 82% is funded by the federal government. Autism research funding has nearly tripled over the past decade, but appears to be reaching a plateau for the next few years.

There is an effort to promote data sharing among research teams. For autism there is the National Database for Autism Research (NDAR) Tom Insel, director of the U.S. National Institute of Mental Health (NIMH) and chair of the IACC has also recently written an article: Time Matters – Why We Care So Much About Data Sharing

ASAN: Urge For the Ban on Aversives in Massachusetts!

18 May

This action alert is from ASAN:

Urge For the Ban on Aversives in Massachusetts!

Tomorrow, May 18th, 2012, Massachusetts State Senator Brian Joyce will be filing two amendments to the Senate Ways & Means Budget currently pending in the Massachusetts State Senate. One of these amendments calls for a complete ban of aversives – also called “aversive therapy” – while the other would restrict their use. If passed, this would ban or limit the use of practices like the contingent electric shock used at the Judge Rotenberg Center (JRC).

But it takes more than one senator to get an amendment passed. We urge you to contact your Massachusetts State Senator and ask him or her to sign on to the Joyce amendments banning or restricting the use of aversives. But please hurry- they have to have signed on by the noon (12pm EST), May 18th deadline!

You can find your Senator’s phone number or email at http://www.malegislature.gov/People/Senate. Because of the urgent deadline, calling their office will be the most effective way to contact them.

Thank you for your support for the rights and safety of Autistics and other people with disabilities in the great state of Massachusetts.

Nothing About Us, Without Us!

Sincerely,
Autistic Self Advocacy Network
http://autisticadvocacy.org

Deficit, Difference, or Both? Autism and Neurodiversity

11 May

A pubmed abstract out this week Deficit, Difference, or Both? Autism and Neurodiversity brings the fourth entry in pubmed using the term “neurodiversity”. One other paper is in Portuguese, and another is from Sweden. That said, I am looking forward to reading this study. I say looking forward because when I checked the the full paper was not available yet. I know of the first author, though. Steven Kapp is an autistic researcher at UCLA. He is a member of the Autistic Self Advocacy Network (ASAN) and was on my list of people to speak with at IMFAR last year.

Here is the abstract.

The neurodiversity movement challenges the medical model’s interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.

The Simons Foundation lists this paper as one of the “papers of the week“.

You can read more about the lead author, Steven Kapp, in the UCLA paper. The Daily Bruin article is Autistic student overcomes symptoms to help treat others. The story tells a little of his childhood and how he is now a graduate student researcher. And his plans for the future:

Eleven years later, Kapp is back at UCLA as a doctoral student in psychological studies in education. His goal is to become a professor and research ways to improve the quality of life and adaptive skills of people with autism.

The paper is based on an online survey and those are prone to biases. However, the paper does appear to address some important issues on the differences *and* the overlap between the medical model and neurodiversity approaches to autism. Further it doesn’t fall into the false-dichotomy trap of many neurodiversity discussions of seeing autism as deficit *or* difference. And, as we can see from the Daily Bruin article, Mr. Kapp is interested in researching ways to improve the quality of life for autistics.

I have hope that this is an article which can help to educate researchers (and others) about neurodiversity without the straw-men and misconceptions that are used by opponents. But, beyond that, the paper starts the dialogue in the literature of how to incorporate neurodiversity ideas into research and practice. Depending on how presented, this could be a very valuable paper.

Thomas Insel: The New Genetics of Autism – Why Environment Matters

4 Apr

Thomas Insel is the director of the National Institute of Mental Health (NIMH) and the chair of the Interagency Autism Coordinating Committee (IACC) in the U.S..

His article can be found here (The New Genetics of Autism – Why Environment Matters) and I have quoted it in full bellow. (As a government publication I feel that it is appropriate to use the entire piece):

Last week’s autism news was about prevalence. The CDC reported a 78 percent increase in autism prevalence since 2002. This week’s autism news is about genetics—three papers in Nature describe new genes associated with autism. For many people, these two stories seem contradictory or, at best, unrelated. Increasing prevalence suggests environmental factors like chemicals and microbes changing over the past decade, whereas genes change over generations. Why is anyone looking for genetic causes when there is such a rapid increase in prevalence? Shouldn’t every research dollar be invested in finding the environmental culprit rather than searching for rare gene variants?

The simple answer is that some autism is genetic. Autism, like schizophrenia and mood disorders, includes many syndromes. Indeed, we should probably speak of the “autisms.” Some of these autisms are single gene disorders, such as Fragile X, tuberous sclerosis, and Rett syndrome. While these rare genetic disorders account for less than 5 percent of children within the autism spectrum, children with any of these disorders are at high risk for autism, roughly a 30-fold higher risk than the general population and higher than any of the other known risk factors. Recent genomics research has discovered that many children diagnosed within the autism spectrum have other genetic mutations that have not yet been designated as named syndromes. Each of these mutations is rare, but in aggregate they may account for 10 – 20 percent or more of what we have been calling the autisms.1

The new papers published today in Nature use an approach called whole exome sequencing, mapping every base of DNA across the exome—the 1.5 percent of the genome known to code for protein. The three research groups are members of the Autism Sequencing Consortium (ASC), an international team of autism genetics researchers. All three look for de novo or spontaneous mutations, changes in DNA sequence that are not found in either parent. Recent sequencing studies in the general population have demonstrated that each of us diverges genomically from our parents — the process of reproduction introduces variation even beyond the random mixture of the genomes we inherit from mom and dad. People with autism and schizophrenia are far more likely to have large de novo copy number variants, sometimes a million bases of DNA that are abnormally duplicated or deleted and not found in either parent.
These new papers go beyond the previous discovery of de novo copy number variants to identify de novo single base changes associated with autism. This is tough sailing because there are so many of these changes in all of us and most of these single base changes have no impact. These studies tried to improve the odds of success by focusing on individuals from families with no one else affected (these are called “simplex” families), and sometimes comparing the individual with autism to a sibling without autism. The results are intriguing.

There is no breakthrough or single gene that is a major new cause of autism. But the role of genetics becomes even more evident when these single base changes are considered. For instance, an individual with autism is nearly 6-fold more likely to have a functional variant in genes expressed in the brain. Sanders et al. estimate as many as 14 percent of affected individuals have such a risk variant.2 This 14 percent is in addition to the 10–20 percent with a large copy number variant or identified genetic syndrome. O’Roak et al. find that 39 percent of these variants are related to a specific biochemical pathway, important for brain signaling.3 And Neale et al., while cautioning that the net effect of all of these changes still leave much of the risk for autism unexplained, note the roles of a few specific genes as genuine risk factors.4

Stepping back from this flood of genomic information, what is most important? First, these reports along with previous publications confirm that genetic risk is both complex and substantial. While individual genes appear to confer limited risk, the aggregate effect of spontaneous coding mutations across the genome is now estimated to increase the risk of autism by 5–20-fold.4 Complex genetics does not mean modest effects.

Second, the kinds of small and large genetic changes associated with autism are common in everyone. Risk is conferred not by the size of the mutation or the number of mutations (we all have many) but by the location. Increasingly, we see that interference with the genes involved in development of synapses confer risk; a similar change upstream or downstream does not.
A third point takes us back to the questions we started with. It is important to understand that de novo mutations may represent environmental effects. In other words, environmental factors can cause changes in our DNA that can raise the risk for autism and other disorders. One of these papers reports that spontaneous changes are four times more likely to show up in paternally inherited DNA and are correlated with paternal age.2 The father’s germline, his sperm cells, turn over throughout the lifespan. Presumably, with advancing paternal age, there are a greater number of spontaneous mutations and a greater likelihood that some of these will affect risk genes. Environmental factors and exposures can cause sperm cells to develop mutations that are not found in the father’s somatic, or body cell, DNA, but these new, spontaneous mutations can be passed to the next generation, raising the risk for developing autism. In the initial report of the relationship between autism and paternal age, boys with autism were 6-fold more likely to have a father in his 40s vs his 20s. In girls with autism, this difference went up to 17-fold.5 Paternal age has, of course, increased in the past few decades. This does not explain the increasing prevalence of autism, but it may contribute.

Is autism genetic or environmental? These new studies suggest it can be both. Genetics will not identify the environmental factors, but it may reveal some of the many syndromes within the autism spectrum (as in other neurodevelopmental disorders), it can define risk (as in other medical disorders), and it should yield clues to the biology of autism (revealing potential targets for new treatments). These three new papers on spontaneous mutations are an important milestone in a long journey. In parallel we need to find environmental factors, recognizing that there will be many causes for the autisms and many roads to find them.

Finally, an unavoidable insight from these new papers is that autism even when genetic may be spontaneous and not inherited in the sense that one or both parents carry some reduced form of the syndrome. Perhaps this insight will finally reduce the “blame the parents” legacy perpetuated for too long in the absence of scientific evidence.

References
1Geschwind DH. Genetics of autism spectrum disorders. Trends Cogn Sci. 2011 Sep;15(9):409-16. Epub 2011 Aug 18. PubMed PMID: 21855394.1
2Sanders SJ, Murtha MT, Gupta AR, Murdoch JD, Raubeson MJ, Willsey AJ, Ercan-Sencicek AG, DiLullo NM, Parikshak NN, Stein JL, Walker MF, Ober GT, Teran NA, Song Y, El-Fishawy P, Murtha RC, Choi M, Overton JD, Bjornson RD, Carriero NJ, Meyer KA, Bilguvar K, Mane SM, Sestan N, Lifton RP, Günel M, Roeder K, Geschwind DH, Devlin B, State MW. De novo mutations revealed by whole-exome sequencing are strongly associated with autism. April 5, 2012. Nature.
3O’Roak BJ, Vives L, Girirajan S, Karakoc E, Krumm N, Coe BP, Levy R, Ko A, Lee C, Smith JD, Turner EH, Stanaway IB, Vernot B, Malig M, Baker C, Reilly B, Akey JM, Borenstein E, Rieder MJ, Nickerson DA, Bernier R, Shendure J, Eichler EE. Sporadic autism exomes reveal a highly interconnected protein network of de novo mutations. Nature. April 5, 2012.
4Neale BM, Kou Y, Liu L, Ma’ayan A, Samocha KE, Sabo A, Lin CF, Stevens C, Wang LS, Makarov V, Polak P, Yoon S, Maguire J, Crawford EL, Campbell NG, Geller ET, Valladares O, Schafer C, Liu H, Zhao T, Cai G, Lihm J, Dannenfelser R, Jabado O, Peralta Z, Nagaswamy U, Muzny D, Reid JG, Newsham I, Wu Y, Lewis L, Han Y, Voight BF, Lim E, Rossin E, Kirby A, Flannick J, Fromer M, Shair K, Fennell T, Garimella K, Banks E, Poplin R, Gabriel S, DePristo M, Wimbish JR, Boone BE, Levy SE, Betancur C, Sunyaev S, Boerwinkle E, Buxbaum JD, Cook EH, Devlin B, Gibbs RA, Roeder K, Schellenberg GD, Sutcliffe JS, Daly MJ. Patterns and rates of exonic de novo mutations in autism spectrum disorders. Nature. April 5, 2012.
5Reichenberg A, Gross R, Weiser M, Bresnahan M, Silverman J, Harlap S, Rabinowitz J, Shulman C, Malaspina D, Lubin G, Knobler HY, Davidson M, Susser E. Advancing paternal age and autism. Arch Gen Psychiatry. 2006 Sep;63(9):1026-32. PubMed PMID: 16953005.

HHS announces new members of the Interagency Autism Coordinating Committee

29 Mar

The U.S. Department of Health and Human Services has announced the public membership for the Interagency Autism Coordinating Committee (IACC). The press release is below.

HHS announces new members of the Interagency Autism Coordinating Committee
Health and Human Services (HHS) Secretary Kathleen Sebelius announced today that she has invited 15 individuals to serve as public members on the Interagency Autism Coordinating Committee (IACC). 

The IACC is a federal advisory committee established by the Combating Autism Act of 2006 and reauthorized by the Combating Autism Reauthorization Act of 2011.  The committee is composed of both federal officials and public members, and is charged with (1) coordinating all efforts within HHS concerning autism spectrum disorder (ASD), (2) developing and annually updating a strategic plan for ASD, and (3) providing advice to the Secretary on matters related to ASD.

Membership of the committee includes a wide array of federal agencies involved in ASD research and services, as well as public stakeholders who represent a variety of perspectives from within the autism community.  This makeup of the IACC membership is designed to ensure that the committee is equipped to address the wide range of issues and challenges faced by families and individuals affected by autism.

“The individuals invited to serve on the Interagency Autism Coordinating Committee represent people on the autism spectrum, autism advocates, parents, clinicians, and researchers from across the country,” Secretary Sebelius said. “I look forward to working with the committee members to make a real difference in the lives of people with autism and their families.”

The individuals invited to serve on the Interagency Autism Coordinating Committee, subject to prescribed appointment procedures, include:

Idil Abdull

Ms. Idil Abdull is the parent of a son with autism and Co-Founder of the Somali American Autism Foundation. As a Somali-American mother, she has worked to raise awareness about the high prevalence of autism among Somali immigrants living in Minnesota and has helped to change autism policies in the state. She also has a special interest in serving as a voice for underrepresented groups more broadly, including those that are struggling with language, cultural, and economic barriers as they seek ways to help their family members with disabilities. Ms. Abdull holds a bachelor’s degree in Health Care Administration.

James Ball

Dr. Jim Ball is a Board Certified Behavior Analyst (BCBA-D) who is the President and CEO of JB Autism Consulting. He has worked in the private sector field of autism for more than 25 years, providing educational, employment, and residential services to children and adults affected with autism. He is a Board member of the Autism Society’s (AS) Board of Directors and is currently the Chair of the National Board. He received his doctorate of education from Nova Southeastern University in Fort Lauderdale, Florida.

Anshu Batra

Dr. Anshu Batra is a developmental pediatrician specializing in autism and early childhood developmental disorders and is the mother of two sons with autism spectrum disorder. She currently works in a private practice that provides medical services to more than 600 patients with developmental disabilities, the majority of whom have an autism diagnosis. The practice is unique not only in terms of the racial, ethnic, and socio-economic diversity of its patients, but also in its scope. Dr. Batra has become an outspoken advocate to educate both the professional and lay communities about autism and considers how to best integrate a growing subpopulation of individuals on the spectrum into society. She received her M.D. from the University of Michigan and trained in Pediatrics at the University of North Carolina at Chapel Hill. 

Noah Britton

Mr. Britton was diagnosed with Asperger’s syndrome a decade ago as a freshman in college and has spent every year since working directly with people on the spectrum. He is an Adjunct Professor of Psychology at Bunker Hill Community College and has presented on autism as a guest lecturer at the University of Virginia and Tufts University. Prior to that Mr. Britton worked directly with teenagers on the spectrum as head counselor for the Northeast ARC’s Spotlight program and as a drama teacher at the New England Academy in Massachusetts. Mr. Britton currently serves on the scientific/educational advisory board of the Autism Higher Education Foundation. He received his master’s degree in psychology from Hunter College in 2010.   

Sally Burton-Hoyle

Dr. Sally Burton-Hoyle, sister to a person on the autism spectrum, has focused her life and career on improving the education of people with autism and other challenging behaviors. She serves as area coordinator of the Masters of Autism Spectrum Disorders program at Eastern Michigan University (EMU). This program is based on Positive Behavioral Supports and family/community involvement. Dr. Burton-Hoyle has been at EMU since 2006 and was Executive Director of the Autism Society of Michigan prior to EMU. In addition, she has classroom experience as a special education teacher. Dr. Burton-Hoyle holds a doctorate in education from the University of Idaho and a master’s degree in special education from the University of Kansas.

Matthew Carey

Dr. Matthew Carey is the father of a young child with multiple disabilities, including autism spectrum disorder, and is a frequent contributor to the Left Brain/Right Brain blog and the Autism Science Foundation Blog. His writing focuses on reviewing current autism research in an understandable way for the public and he is deeply committed to communicating the importance of getting the science right for autism. He is also interested in analyzing trends in health and education public datasets.  Dr. Carey is an active industrial researcher in computer hardware whose current research interests include magnetic thin films, spintronics, and magnetic nanostructures. He received his Ph.D. in Physics from the University of California, San Diego, and his M.S. in Physics from the University of Illinois, Urbana-Champaign.

Dennis Choi

Dr. Dennis Choi is the Executive Vice President of the Simons Foundation, the second largest funder of autism research, and he was previously a member of the Foundation’s Scientific Advisory Board. His past positions have included Vice President of Academic Health Affairs at Emory University, Executive Vice President of Neuroscience at Merck Research Labs, and professor and head of Neurology at Washington University Medical School. His research experience has included work on the physiological mechanism of action of benzodiazepine drugs and the processes responsible for nerve cell death after ischemic or traumatic insults. His research on mechanisms of brain and spinal cord injury has been recognized with several awards. Dr. Choi received his M.D. from the Harvard-MIT Health Sciences and Technology Program, as well as a Ph.D. in pharmacology and neurology residency/fellowship training from Harvard University, before joining the faculty at Stanford University School of Medicine from 1983-1991.

Jose Cordero

Dr. Corderois the Dean of the Graduate School of Public Health at the University of Puerto Rico. Prior to this appointment, Dr. Cordero was an Assistant Surgeon General of the Public Health Service and the Founding Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. He served in this capacity since the establishment of the center on April 16, 2001. Dr. Cordero worked for 27 years at the CDC and has extensive public health experience in the fields of birth defects, developmental disabilities, and child health.  He obtained his medical degree from the University of Puerto Rico in 1973, completing residency training in pediatrics at Boston City Hospital and a fellowship in medical genetics at the Massachusetts General Hospital. In 1979, Dr. Cordero obtained a Masters in Public Health from Harvard University.

Jan Crandy

Ms. Jan Crandy is a case manager for the Nevada State Autism Treatment Assistance Program (ATAP) and has been a leader in raising awareness and treating autism spectrum disorders in Nevada for more than 15 years. She is a dedicated advocate and parent of a child with autism. In her current position at ATAP, Ms. Crandy manages and develops programs for more than 65 children with ASD. In 2007, Ms. Crandy was appointed to the Nevada Autism Task Force by Governor Jim Gibbons. In that role, Ms. Crandy helped develop policy recommendations for state policymakers on ways to improve the delivery and coordination of autism services in Nevada. She also serves as Chair of the Nevada Commission on Autism Spectrum Disorders. Ms. Crandy began her career in advocacy in 1996 when her daughter was diagnosed with autism. With the support of family and friends, Ms. Crandy started a nonprofit organization called Families for Early Autism Treatment (FEAT) to help parents of children with ASD in Southern Nevada.

Geraldine Dawson

Dr. Dawson is the Chief Science Officer for Autism Speaks, where she works with the scientific community and other stakeholders to shape and expand the organization’s scientific vision. In addition to her work with Autism Speaks, Dr. Dawson holds the positions of 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. Dr. Dawson is a licensed clinical psychologist who has published extensively on autism spectrum disorders, focusing on early detection and intervention and early patterns of brain dysfunction. In collaboration with Dr. Sally Rogers, Dawson helped to develop and empirically-validated the Early Start Denver Model, the first comprehensive early intervention program for toddlers with autism. She has collaborated on numerous studies of brain development and function and genetic risk factors in autism. From 1996-2008, Dr. Dawson was Founding Director of the University of Washington Autism Center where she directed three NIH Autism Center of Excellence Award programs of research focusing on genetics, neuroimaging, early diagnosis, and clinical trials. Dr. Dawson has served as a public member on the Interagency Autism Coordinating Committee since 2010 and has been invited to continue her service.  Dr. Dawson received her Ph.D. in Developmental Psychology with a minor in Child Clinical Psychology from the University of Washington.

David Mandell

Dr. David Mandell is a health services researcher and psychiatric epidemiologist who seeks to identify the best ways to organize, finance and deliver services to children with psychiatric and developmental disabilities. He is an Associate Professor of Psychiatry and Pediatrics at the University of Pennsylvania’s School of Medicine. The goal of his current research is to improve care for children with autism and their families by developing successful interventions at the individual, provider and system levels to decrease the age at which children with autism are recognized and enter treatment, and to improve the services and supports available to them and their families.  Dr. Mandell holds a bachelor of arts in psychology from Columbia University and a doctorate of science from the Johns Hopkins School of Hygiene and Public Health.

Lyn Redwood

Ms. Lyn Redwood is Co-Founder and Executive Director of the Coalition for SafeMinds and Co-Founder of the National Autism Association (NAA). She became interested in autism research and advocacy when her son was diagnosed with Pervasive Developmental Disorder. Ms. Redwood served on the Department of Defense Autism Spectrum Disorder Research Program from 2007-2009 and was acknowledged for a decade of service by Spectrum Magazine as their Person of the Year in 2009. Ms. Redwood has served as a public member on the Interagency Autism Coordinating Committee since 2007 and has been invited to continue her service.  Ms. Redwood holds a Master’s of Science in Nursing from University of Alabama and is a registered nurse in the state of Georgia.

Scott Michael Robertson

Mr. Scott Michael Robertson co-founded the Autistic Self Advocacy Network (ASAN) in 2006 and currently serves as ASAN’s Vice Chair of Development. Mr. Robertson, an adult on the autism spectrum, is currently a Ph.D. Candidate in information sciences and technology at Penn State University’s University Park campus. His research pursuits in the fields of disability studies, human-computer interaction, and computer supported work/learning focus on understanding and improving the lives of people with neurological and developmental disabilities. Beyond his research, Mr. Robertson has actively served the cross-disability and autism communities as a mentor, teacher, advocate, public speaker, and writer. Mr. Robertson holds a bachelor’s degree in computer science from Rensselaer Polytechnic Institute and a master’s degree in human-computer interaction from Carnegie Mellon University.

John Elder Robison

John Elder Robison is an adult on the autism spectrum who grew up in the 1960s before the Asperger diagnosis came into common use. At age sixteen, Mr. Robison left high school to join his first band as a sound engineer. Within a few years he was building equipment for Pink Floyd’s sound company, touring the hockey rinks of Canada with April Wine, and creating the signature special effects guitars for the rock band, KISS. John went on to design sound effects and other circuits for some of the most popular electronic games and toys of the era before moving into more conventional engineering management. In the late 1980s, John left electronics for a new career – cars. His company, J E Robison Service, grew to be one of the largest independent restoration and service specialists for BMW, Bentley, Jaguar, Land Rover, Mercedes, and Rolls Royce cars. Mr. Robison is an adjunct faculty member in the Department of Communication Sciences and Disorders at Elms College in Chicopee, Massachusetts; speaks publicly about his experience as a person on the autism spectrum; and is the author of popular books about living life with autism, Look Me in the Eye, My Life with Asperger’s, and Be Different, Adventures of a Free-Range Aspergian.

Alison Singer

Ms. Alison Singer is Co-Founder and President of the Autism Science Foundation, a not-for-profit organization launched in April 2009 to support autism research. The Autism Science Foundation supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. Ms. Singer is the mother of a daughter with autism and legal guardian of her adult brother with autism. From 2005-2009 she served as Executive Vice President and a Member of the Board of Directors at Autism Speaks. Ms. Singer has served as a public member on the Interagency Autism Coordinating Committee since 2007 and has been invited to continue her service.  Ms. Singer graduated magna cum laude from Yale University with a B.A. in Economics and has an M.B.A. from Harvard Business School.

Public announcement of the formal appointments of federal and public members to the IACC will follow in the coming weeks.

More information about the Interagency Autism Coordinating committee is available at: http://iacc.hhs.gov

Autism Prevalence: More Affected or More Detected?

29 Mar

Tom Insel, director of the U.S. National Institute of Mental Health and Chair of the Interagency Autism Coordinating Committee has published a blog article coinciding with the CDC announcement of 1 in 88 estimated prevalence.

As a government publication, I feel it is OK to copy it here in total, but you are encouraged to read it on the NIMH website: Autism Prevalence: More Affected or More Detected?

Autism is always surprising. Earlier today, the CDC released new numbers from their ongoing surveillance of autism prevalence, the Autism and Developmental Disability Monitoring (ADDM) Network. What was once considered a rare disorder is now reported as affecting 1 in 88 children, 1 in 54 boys. These new numbers, up 78 percent from 2002 and 23 percent from 2006, raise immediate questions. Are more children affected or more detected? Does the increase reflect a growing problem, or do these new numbers reflect an improvement in our ability to diagnose and serve those affected?

These new data do not answer these questions. The CDC surveillance project focuses on 8-year-olds identified in 2008; that is, children who were born in 2000. By definition, autism begins before age 3, so a focus on 8-year-olds should capture anyone who was identified and still has a diagnosis. The prevalence numbers are based on a standardized assessment of descriptions of behaviors culled from administrative or health records from select communities, not on standardized diagnostic interviews in the general population. The strength of this approach is its wide reach, allowing a comparison across 14 states. The CDC reports a four-fold variation across sites. These new results, as with those from other records-based surveillance systems, do not answer questions related to why the identified prevalence of autism has changed over time.

Other research suggests a complicated picture. A total population study of all 7–12-year-olds in a town in South Korea (more than 55,000 children) used standardized diagnostic instruments for children who screened positive and reported a prevalence of 2.64 percent.1 That is 1 in 38 children! There is no reason to expect that this prevalence is unique to this community. To be sure, two-thirds of these children had never received a diagnosis of autism spectrum disorder (ASD), meaning that the identified prevalence was closer to 1 percent or one in 100, roughly the same prevalence reported in the United States. From this perspective, the increase reported by the CDC might mean we are better at detecting children who meet criteria for ASD, but potentially we still are only halfway to the actual prevalence in the general population. Indeed, the biggest increase in the CDC surveillance report was in Hispanic and African American children, groups which previously had low rates of detection.

But can we be certain that more children are not affected? Data from the Developmental Disability Services registry in California demonstrates a 12-fold increase in the number of children receiving services for autism over the past 20 years, with a continuing rise recently. But these data, while dramatic, cannot rule out increased use of the diagnosis. Bearman and colleagues who have studied the California trends suggest that only about 26 percent of this increase can be explained by diagnostic substitution, especially for the most severe cases — children with intellectual deficits — which may not have been identified as autism in an earlier era. Another fraction can be attributed to better ascertainment or detection especially for children at the less severe end of the spectrum. Together these factors explain only a part of the linear increase observed in the California registry. In the absence of other explanations they and others suggest that a real increase is quite likely.2, 3, 4

Which makes a recent report from England especially surprising. In a careful epidemiological study based on a national sample (n = 7,461 adults) from 2007, Brugha and colleagues did careful diagnostic assessments based on standardized interviews. They found that familiar rate of about 1 percent in adults across the entire age range without a significant reduction in the older part of the sample as one would expect if the prevalence had increased in recent years.5

This takes us back to the central question: has the number of children with ASD increased or not? Total population epidemiological studies suggest much or all of the increase is due to better and wider detection. Studies of administrative and services data suggest that better detection cannot fully explain the profound and continuing increase. Are we seeing more affected or more detected? The question is vitally important, but there is not one, simple answer just as autism is not a single, simple disorder.

If there is an increase in the number affected, then we need to find the causal factors to bend the curve. Analogous increases in food allergies, asthma, and Type 1 diabetes have provoked an aggressive search for environmental causes. If the number of children with ASD has not changed, but we are diagnosing and serving 12-fold more of them over the past two decades, then we need to focus on better diagnosis and treatments rather than looking for new environmental factors driving the precipitous increase.

Science can resolve this dilemma, but the methods to examine this question as well as the answers will be complex. While it is never possible to go back in time, longitudinal population based studies and even careful retrospective studies can determine if more children are affected and if the nature of the disorder is changing over time. The changes in prevalence of other developmental disorders, measured with biomarkers (Type 1 diabetes) or emergency room visits (food allergies), appear to be true increases in the number of children affected. As diagnostic changes and ascertainment fail to explain the majority of the increase in autism prevalence, it seems prudent to assume that there are indeed more children affected and continue an aggressive search for causes while striving to improve detection, treatments, and services. Our working assumption is that there are both more children affected and more detected.

References

1Kim YS, Leventhal BL, Koh YJ, Fombonne E, Laska E, Lim EC, Cheon KA, Kim SJ, Kim YK, Lee H, Song DH, Grinker RR. Prevalence of autism spectrum disorders in a total population sample. Am J Psychiatry. 2011 Sep;168(9):904-12. Epub 2011 May 9. PubMed PMID: 21558103.
2King M, Bearman P. Diagnostic change and the increased prevalence of autism. Int J Epidemiol. 2009 Oct;38(5):1224-34. Epub 2009 Sep 7. PubMed PMID: 19737791; PubMed Central PMCID: PMC2800781.
3Keyes KM, Susser E, Cheslack-Postava K, Fountain C, Liu K, Bearman PS. Cohort effects explain the increase in autism diagnosis among children born from 1992 to 2003 in California. Int J Epidemiol. 2011 Dec 7. [Epub ahead of print] PubMed PMID: 22253308.
4Bresnahan M, Li G, Susser E. Hidden in plain sight. Int J Epidemiol. 2009 Oct;38(5):1172-4. PubMed PMID: 19797336.
5Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, Bebbington P, Jenkins R, Meltzer H. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry. 2011 May;68(5):459-65. PubMed PMID: 21536975.

President Obama Tells The Arc, Disability Community “I’ve Got Your Back”

20 Feb

Barack Obama, President of the United States, made a surprise visit to a White House Community Leaders Briefing for The Arc.

Here is the press release on the event from The Arc:

Washington, DC – Today, 150 leaders of The Arc from across the country met with a variety of senior White House officials at a Community Leaders Briefing to ask questions and discuss issues facing people with intellectual and developmental disabilities (I/DD). The session, held just for The Arc, included an unannounced visit from President Barack Obama. The President spoke of his commitment to people with disabilities saying, “I’ve got your back.”

This surprise appearance by the President of the United States was the highlight of the day for many attendees, along with the opportunity to interact with high level government officials about how they can support people with I/DD to live in the community. Over the course of the day, leaders of chapters of The Arc were briefed on topics ranging from Medicaid to education to community living and employment for people with I/DD. Many of the speakers, including President Obama, referenced the impact advocates made during budget negotiations to protect Medicaid, and encouraged The Arc and others to continue these efforts.

Another unannounced speaker was White House Chief of Staff Jack Lew, who reiterated the President’s opposition to turning Medicaid into a block grant. He also took questions from the audience, including Barbara Coppens, a member of the national board of directors of The Arc and a self-advocate who took the opportunity to speak about the importance of self-advocacy by people with disabilities.

“I tell other self-advocates – you’ve got to get out there and advocate for yourself because you can’t rely on other people to make change for you,” said Coppens to Chief of Staff Jack Lew.

The day was organized by Kareem Dale, Special Assistant to the President for Disability Policy, who kicked off the agenda by welcoming guests and speaking about employment issues. The Arc heard from Cecilia Muñoz, Director of the White House Domestic Policy Council, who spoke of their commitment to providing services and supports to all in need. Other speakers included Carol Galante, Acting Assistant Secretary – Federal Housing Administration Commissioner, Department of Housing and Urban Development; Cindy Mann, Deputy Administrator, Centers for Medicare and Medicaid Services; Robert Gordon, Executive Associate Director, Office of Management and Budget; and Tom Perez, Assistant Attorney General for Civil Rights, Department of Justice.

Assistant Attorney General Perez discussed the recent Department of Justice settlement with the Commonwealth of Virginia regarding people with I/DD who live in any of its five institutions who could live in the community. He spoke about the bipartisan work going on across the country to implement the Olmstead decision, which states that under the Americans with Disabilities Act (ADA), unnecessarily institutionalizing a person with a disability who, with proper support, is capable of and who wants to live in the community can amount to discrimination.

After a tour of the East Wing of the White House, advocates from The Arc took part in policy breakout sessions that allowed for more detailed discussions on certain issue areas, like community living, family caregiving, education, and Medicaid. The purpose of these briefings was to allow White House and administration officials to engage in a dialogue with leaders of The Arc about how government policies affect the lives of people with I/DD and impact their ability to live full, independent lives. Given the Department of Education’s announcement yesterday to allow ten states waivers from some of the No Child Left Behind law requirements, the education session with Alexa Posny, Assistant Secretary, Office of Special Education and Rehabilitation Services, was incredibly timely, as were meetings with representatives from the Department of Health and Human Services, Department of Justice, Administration on Aging, and the White House Domestic Policy Council.

“This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government allowed leaders of The Arc to make the voices of the millions of people with I/DD heard at the White House. Our network seized on this opportunity, and we left the White House feeling a sense of accomplishment and inspiration for continued advocacy that we will take back to our communities to help grow our movement,” said Peter V. Berns, CEO of The Arc.

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