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My comment to the IACC

19 Jul

The IACC seeks public comment, both in-person and in writing. Below is my comment submitted for today’s meeting. I didn’t get this out until late, so it may not be included with the packets for the IACC members today, but it concerns an issue I find very important:

Dear Interagency Autism Coordinating Committee members:

I would like to thank the IACC members for their work over the recent years. It is my sincere hope that the Combating Autism Act will be reauthorized, allowing this committee to continue to guide autism research goals.

One goal I would hope that would be addressed in future Strategic Plans is the need for adequate medical care for autistics. It is my belief that the current medical system in the U.S. does not incentivize doctors for the care that is required by the disabled. One doctor told me that 70% or more of the information needed to come to a preliminary diagnosis comes from direct communication with the patient. It seems highly likely that individuals with difficulties in communication and sensory issues will require additional effort on the part of physicians. And, yet, insurance assumes that an office visit will be the same time for an autistic individual as for a non-autistic individual.

The questions that I would like to see addressed are straightforward. First, what is the appropriate amount of time doctors need to take to adequately address the needs of their autistic patients? This information could be used to allow for an additional or a different billing code for doctors to use with this population. Second, does the current system disincentivize doctors from taking on disabled patients in general, and autistic patients in specific?

A recent paper gives a view of the importance of these issues: Parenting aggravation and autism spectrum disorders: 2007 National Survey of Children’s Health. Parents without a medical home show much higher levels of aggravation. Addressing this one area could provide much benefit to not only the autistic children, but to the parents as well.

Again, I thank you for your time serving the needs of autistics.

Respectfully submitted

IACC Chairman Insel Testifies Before House Committee on the Combating Autism Act and the Accomplishments of the IACC

19 Jul

The Combating Autism Act (CAA) is set to “sunset” at the end of September of this year. With that would be the sunset of the Interagency Autism Coordinating Committee (IACC). The U.S. legislature is considering a re-authorization of the Act. Below is an announcement from the IACC about a congressional hearing, with testimony from Dr. Tom Insel, chair of the IACC and director of the National Institute of Mental Health (NIMH).

Testifying before the U.S. House of Representatives Energy and Commerce Subcommittee on Health on July 11, Dr. Thomas Insel spoke about the Combating Autism Act of 2006 and the successful federal coordination and public-private partnership efforts that have resulted from the Interagency Autism Coordinating Committee (IACC) that was created as part of the legislation. Without reauthorization of the Combating Autism Act, the IACC will sunset in September 2011. Representatives Christopher Smith (R-NJ) and Michael Doyle (D-PA) introduced the Combating Autism Reauthorization Act of 2011 (H.R. 2005) on May 26, 2011, a bill that, if enacted, would reauthorize the IACC and other federal programs that conduct research and provide services for people with autism spectrum disorders (ASD) and their families.

During his testimony, Dr. Insel, who is the director of the National Institute of Mental Health and chair of the IACC, focused on the work of the IACC in the five years since the Act was enacted, noting that the committee has “really served to focus efforts across the federal government by bringing federal agency representatives for research, services, and education, as well as parents, people with ASD, scientists, clinicians, and others together to work as a team…”

He praised the dedication of the members and noted that the collaboration between public and private members has fostered important partnerships and ensured that a range of voices and perspectives were heard. The committee’s strategic plan has guided national research efforts by creating a comprehensive blueprint for autism spectrum disorders (ASD) research.

Since the Combating Autism Act was enacted in 2006, there has been remarkable progress in the identifying symptoms of autism early, in understanding how commonly autism occurs in the community, and in developing effective interventions, particularly for very young children. This research is “moving rapidly toward translation into practical tools that can be used in clinics and community settings to change outcomes for people with ASD,” Dr. Insel said.

Health Subcommittee Members asked Dr. Insel a variety of questions, ranging from estimates of autism’s economic impact on families and society to racial disparities in diagnosis and recent research advances in the field. Asked about a recent study that suggests environmental risk factors may play a greater role in autism risk than previously thought, Dr. Insel stressed the importance of understanding how both genetics and environment interact to influence risk. He noted that, while less is known about environmental risk factors for autism than genetic factors, a number of projects were underway to follow children from before birth to early childhood to study potential environmental exposures.

When asked about the most significant gaps in ASD research, Dr. Insel cited the lack of knowledge on effectively supporting the transition from adolescence to adulthood and fixing the inconsistent service delivery systems across the country.

During the hearing, Dr. Insel was also asked how the IACC has been successful. He pointed to the committee’s achievement in improving coordination between federal agencies as well as between federal agencies and private foundations. He noted the importance of creating specific public-private partnerships around key areas of research interest and community need, citing the Autism Treatment Network (ATN) as an excellent example. The ATN is a partnership between Autism Speaks, the National Institutes of Health (NIH), and the Health Resources and Services Administration (HRSA) that creates a comprehensive model of care for children and adolescents with autism. This network helps involve families in research and provides the latest treatments directly to the community.

In addition, he pointed to the importance of public participation in the committee’s activities, creating a public forum for the community’s needs to be heard. He credited the families of people with ASD for their tireless work on behalf of the autism community, saying , “There’s no group of people that I’ve met that are more inspiring than the families of people with autism. These are really dedicated parents, who make things happen.”

While much has been accomplished, Dr. Insel emphasized the importance of continued Congressional support to build on the advances enabled by the Combating Autism Act of 2006. “While there’s been unequivocal progress, much work remains to be done. The reauthorization will be critical for continuing this momentum and the stability of the IACC over the next three years,” he said. Dr. Insel stated that reauthorization was only one step and that appropriations were critical for continued progress. He likened the reauthorization to obtaining a driver’s license, noting, “The agencies serve as our vehicle. We’ve got a great road map through this strategic plan that the IACC has put together, but at the end of the day, whether we have gas in the car or not depends on [the availability of funds appropriated by Congress].” If enacted, the Combating Autism Reauthorization Act of 2011 (H.R. 2005) would enable the committee to continue coordinating federal agency and private efforts to advance ASD research and enhance services to meet the needs of people with ASD and their families.

Dr. Insel starts at minute 21 in this video:

Here is his testimony:

Good morning Chairman Pitts, Ranking Member Pallone and members of the Committee. I am Tom Insel, Director of the National Institute of Mental Health (NIMH) at the National Institutes of Health (NIH). I have served as the Chair of the Interagency Autism Coordinating Committee (IACC), created by the Children’s Health Act of 2000 and re-established by the Combating Autism Act of 2006 (CAA), since my arrival at NIMH in 2002.

First, let me express my sincere appreciation for the opportunity to give you some background on how the existing CAA has facilitated unprecedented collaboration between federal agencies and private organizations, enabling amazing progress in the field of autism research and serving to sharpen our focus on the need for better services for people with autism and their families. We at NIH are very grateful for the strong support that you in Congress have always shown for NIH and the thousands of researchers around the country that it funds. As chair of the IACC, I’d like to express the gratitude of all the federal agencies that are members for your continued interest and encouragement.

The CAA dealt with five general provisions: centers of excellence, surveillance, education for early detection and intervention, the IACC, and authorization of funding. The 11 Autism Centers of Excellence, surveillance efforts at the Centers for Disease Control and Prevention (CDC), programs for early detection and intervention, and funding for all of these programs is authorized to continue with or without reauthorization of the CAA. The one provision that requires reauthorization to continue is the IACC, which is scheduled to sunset on September 30, 2011. For this reason, I will focus my remarks today on the IACC, but I welcome your questions about other provisions of the CAA.

In order to give you the most comprehensive yet concise background, I’ll briefly describe the IACC, its membership, its transparent process, its collaborative activities, the influential Strategic Plans that it has developed, and its various areas of intense interest. In short, this description will let you know that the IACC has fulfilled each and every requirement of the CAA. It has provided both an important forum for public discussion of autism issues and a framework for a research agenda that is optimized to take full advantage of scientific opportunities. As time permits, I also hope to share some examples of the very recent research advances that are so exciting in this field, and how these advances have been facilitated by the existence of the Strategic Plans developed by the IACC with considerable public input. Finally, I’ll discuss how the IACC has focused on the need to enhance services for people with autism.

Autism spectrum disorder (ASD) is a diverse collection of disorders that share in common impairments in verbal and nonverbal communication skills and social interactions, as well as restricted, repetitive, and stereotyped patterns of behavior. The degree and specific combination of impairments can vary from one individual to the next, creating a heterogeneous disorder that can range in impact from mild to significantly disabling. Two decades ago, ASD was considered a rare disorder. Today, with CDC’s latest prevalence estimates of 1 in 110 children in the U.S. being diagnosed with ASD, this disorder has become an urgent national health priority. In 2006, Congress passed the CAA to strengthen federal coordination around this issue and, to enhance public-private collaborations in order to accelerate research to improve the lives of people with ASD and their families.
The CAA outlines the membership of the IACC, which includes both representatives of federal agencies and public members representing a diverse set of stakeholder groups within the autism community. Currently, the IACC includes two people with ASD, several parents of children and adults with ASD, members of the advocacy, research, and service provider communities, and officials from the following federal agencies and offices that are involved in ASD research or services provision: Department of Education (ED), HHS’s CDC, Centers for Medicare & Medicaid Services (CMS), Office on Disability (OD), Substance Abuse and Mental Health Services Administration (SAMHSA), Administration on Developmental Disabilities (ADD) in the Administration for Children and Families (ACF) , Health Resources and Services Administration (HRSA), five institutes of NIH, and the NIH Director. Major autism research and services organizations represented on the IACC include Autism Science Foundation, Autistic Self Advocacy Network, Autism Speaks, SafeMinds, Simons Foundation, Southwest Autism Research & Resource Center, and the U.C. Davis M.I.N.D Institute.

In addition to the voices and perspectives added by the members of the IACC, the IACC has fostered public participation by having public comment periods at every full IACC meeting, regularly inviting written public comment, conducting formal requests for information from the public and holding town hall meetings, and has provided a high level of transparency for the public by actively disseminating information about IACC activities via e-mail, the IACC website, webcasts and even Twitter. By including both federal and public members on the committee, and by fostering public engagement through a variety of means, the IACC ensures that a diversity of ideas and perspectives on ASD are brought to the table to inform the IACC’s activities and recommendations. The IACC is a committed group—while the law only requires the committee to meet twice a year, since 2007, the committee has met around 16 times per year, including full committee and subcommittee meetings, workshops and town hall meetings.
Under the CAA, the IACC is charged with developing and annually updating a strategic plan for ASD research. In fulfilling these requirements, the committee produced its first strategic plan in January 2009 and has issued updates in 2010 and 2011. The IACC developed its Strategic Plan with a great deal of input from the public, gathered through planning meetings, town hall meetings, and requests for information. This tremendous public input, combined with that of scientific and subject matter experts and all the major federal agencies and private funders resulted in a plan that provided a clear path to move autism research forward in targeted, innovative ways to help public and private agencies prioritize activities as soon as it was released. The first IACC Strategic Plan was organized into six chapters that reflect the needs expressed by the community: early and accurate diagnosis, better understanding how autism develops, enhanced ability to identify risk factors, development of new and more effective interventions and treatments, more research needed to inform and enhance services, and the development of better approaches to meet the changing needs of people with ASD over the entire lifespan. In 2010, the committee also added a chapter on the infrastructure needed to support a robust research effort. As you can tell, our strategic plan has a broad scope, in part because it was developed through the cooperation of both research and services-focused agencies and private organizations. While the Plan is a research plan, as the law directs, it encompasses a range of research that goes from fundamental biology of ASD to inform new diagnostics and therapies, to the actual development of those needed tools and approaches, and finally to research that can inform and enhance services programs to meet the needs of people with autism across the lifespan.

Fortuitously, the first strategic plan was completed just as NIH received significant additional funding from the American Recovery and Reinvestment Act to help stimulate the economy through the support and advancement of scientific research. With a strategic plan in place to guide priorities, NIH allocated over $122 million of additional funding between FY09 ($64 million) and FY10 ($58 million) to autism research, supporting a variety of projects addressing the most critical research needs highlighted by the IACC. This was in addition to NIH’s investment of base annually appropriated funds for autism research, which was $160 million in 2010. The overall NIH investment in autism research was an unprecedented $218 million in 2010, more than double the funding prior to the CAA.

The IACC has also fulfilled the CAA requirements to produce an annual summary of advances in research and to monitor federal research activities. Since 2007, the IACC has issued four Summary of Advances documents, which describe what the committee felt were some of the most exciting advances in autism biomedical and services research each year. The IACC has also been actively monitoring not only federally-funded research, as the CAA requires, but has also tracked the research funded through private organizations, making for a much more complete picture of the research landscape across the U.S. All of the private organizations on the IACC that conduct research provided their data, and we have also collected data from all U.S. federal agencies and additional private groups. The result has been the IACC’s annual “portfolio analysis.” The first year, the data were presented at IACC meetings, but in subsequent years the IACC issued full reports on fiscal years 2008 and 2009 funding; the analysis of 2010 data is currently underway. These portfolio analysis reports have provided the first comprehensive look at autism research being conducted in the U.S. They also have facilitated a better understanding of how current research aligns with the IACC Strategic Plan. The committee has found both the summary of advances and portfolio analysis reports to be valuable tools for updating the Strategic Research Plan and determining the greatest areas of need for further action.

This year, the HHS/NIH office that supports the IACC, the Office of Autism Research Coordination (OARC), published a comprehensive Report to Congress, as required in the CAA, on federal activities that have taken place since the passage of the CAA. That report contains rich information about the programs and projects going on across HHS and the ED to meet the needs of people with autism. I urge you to take a look at this report because it provides the most comprehensive picture to date of how federal agencies are responding to the urgent needs of the autism community. The report contains details of the wide array of autism research, services and supports activities conducted by federal agencies, including biomedical and services research, public health activities, education initiatives, early screening, diagnosis and intervention services, provider training, healthcare delivery, social supports, and vocational training. We have copies of this and the other most recent reports mentioned with us and will be happy to give you copies.

Now I’d like to share with you some of the exciting advances we have seen in ASD research. Since the passage of the CAA in 2006, there has been a groundswell of activity on multiple fronts, from game-changing scientific discoveries reshaping the field of autism research to real-world applications that can help people with ASD and their families now.

As I mentioned earlier, one of the main provisions of the CAA was support for early diagnosis and intervention. CDC reports that the median age for autism diagnosis is 4 and half years of age and varies widely by sociodemographic group and geographic location. With recent advances, diagnosis by age 14 months is now a realistic possibility, and researchers are actively pushing the detection window to even younger ages. In April 2011, NIH-funded researchers demonstrated that a simple, low-cost, practical screening tool that takes only five minutes to administer can be implemented by doctors’ offices to detect ASD around one year of age for many children. More than 100 pediatricians in San Diego County, CA participated and screened over 10,000 one year old children using the checklists. Impressively, all pediatricians who participated in the study are continuing to use the tool because they recognized the tremendous potential it provides to identify autism earlier and direct families toward interventions that can result in significant positive outcomes earlier in life. Another promising diagnostic tool is a simple test that detects eye gaze patterns specific to infants with autism. A group of researchers at University of California, San Diego who have received funding from NIH to develop such a test recently reported that they could identify 1-3 year old children with autism with nearly 100 percent specificity. These promising diagnostic tools, combined with CDC’s health education campaign, “Learn the Signs. Act Early.”, to improve early identification, provide great potential for reducing the age of diagnosis and allowing children and their families to get the services and support they need when it can help the most.

Of course, early diagnosis is only valuable if effective interventions are available. Recently published results from several successful trials of early interventions have validated approaches that are effective in young children, creating real promise of improved health outcomes, and quality of life for children with ASD. In 2010, NIH investigators reported that children with ASD who receive a high intensity behavioral intervention starting by age 18-30 months show improvements in IQ, language, and adaptive behavior, to the point where the autism diagnosis no longer applies to some children who receive treatment. Soon after that groundbreaking study, a group of investigators jointly funded by HRSA and NIH reported that an intervention designed to enhance social engagement in toddlers indeed improved social, language, and cognitive outcomes. Early interventionists have noted an encouraging “problem” – new approaches that are being proven effective are being taken up so quickly by the community that it is difficult to find “control groups” for behavioral intervention trials. While this can complicate efforts to conduct randomized control trials, the real story is that parents and community practitioners are putting innovative strategies into practice quickly. Many of these recent advances in early diagnosis and intervention can be credited to NIH’s Autism Centers of Excellence (ACE), which were expanded under the CAA and now comprise 11 research centers at major research institutions across the country.

We do not know the causes of ASD, but very recent findings comparing identical and fraternal twins suggest the importance of focusing on both environmental and genetics factors. NIH and CDC are continuing to strengthen research investigations into possible environmental causes of autism, establishing expansive research networks with the capability to collect large sets of data on environmental exposures and health outcomes, and to conduct powerful analyses to determine which risk factors may be contributing to the development of autism. Population-based studies are the gold standard in epidemiology research. Large sample sizes and rigorous study designs allow researchers to examine many variables at once. Such networks, like NIH’s Childhood Autism Risks from Genetics and the Environment (CHARGE) and Early Autism Risk Longitudinal Investigation (EARLI) and CDC’s Study to Explore Early Development (SEED), will utilize data from medical records, interviews, questionnaires, developmental assessments, and physical exams to explore a host of possible risk factors, focusing heavily on factors in the environment before, during, and after pregnancy. It will take a few more years for these research networks to fully mature, but already, published findings are helping establish the evidence-base for ruling in and ruling out possible environmental triggers. In the first half of 2011 alone, the CHARGE study has implicated air pollution, mitochondrial dysfunction, and immune dysfunction as potential mechanisms for ASD. Just this month, CHARGE investigators reported that use of prenatal vitamins may reduce the risk of having children with autism. In the past week, another study, funded by CDC and a private group, showed that widely-used antidepressant medications taken during pregnancy can significantly raise the risk of having children with autism. In addition to their work on identifying risk factors for ASD, CDC also continues to provide the most comprehensive estimates to date of the prevalence of ASD in multiple areas of the U.S. through its Autism and Developmental Disabilities Monitoring (ADDM) Network. While great progress is being made for autism, CDC’s prevalence estimates have documented significant increases in autism in the US, which highlights the need to continue research efforts and service advances being made with facilitation by the IACC activities.

With the pace of research moving so rapidly, I am confident that our continued investments in novel and innovative biomedical research in ASD will pay large dividends in the future. But there’s a strong imperative to push the best of what we know now out into the community as rapidly as possible.

HHS’s OD and the Assistant Secretary for Planning and Evaluation are creating the infrastructure to support and conduct patient centered research on health services and supports for people with disabilities, including autism. Their new Center of Excellence, authorized under the American Recovery and Reinvestment Act, is part of a national strategy for quality improvement in health care and the expansion of health care delivery system research with a focus on person-centered outcomes research. Expanding on that effort, CMS is testing and implementing family-driven, person-centered and home and community-based service provision models for people with autism.

A common goal across many federal agencies is to support and empower people with autism to live more independently and enjoy an enhanced quality of life. Informed by the IACC Strategic Plan, NIH is making non-traditional investments in novel service and health delivery models, aided by the infusion of additional funds from the Recovery Act. Both the ED’s Rehabilitation Services Administration (RSA) and HHS’s SAMHSA “Supported Employment Toolkit” are helping people with autism secure and maintain jobs in the community. Medicaid continues to fund supported employment and habilitation services through States’ home and community-based waiver programs, which pay for such services for many people with intellectual and developmental disabilities across the nation.

There are also interventions and supports that can help people with autism and their families today. HRSA is helping to pave the road from research to practice. Through funds provided by the Combating Autism Act Initiative (CAAI) under the CAA, HRSA has invested substantially in autism interventions to improve physical and behavioral health of people with ASD, practitioner training, and service provision models. HRSA-funded investigators are examining critical questions, such as the impact of co-occurring health conditions in autistic individuals and the effectiveness of parent-mediated and peer-mediated behavioral interventions. HRSA’s health professionals’ training programs are designed to reduce barriers to screening and diagnosis by increasing professional capacity and raising awareness about ASD among providers in the community. HRSA’s State Implementation Grants represent nearly $2.7 million in funds to assist nine States with improving services for people with ASD. These grants promise to help identify best-practices at the individual, community, and policy level. When possible, partnerships between agencies are being formed – HRSA and CDC have joined to sponsor “Act Early” Summits in all regions of the US and to facilitate the development of professional and community teams to improve the early identification of children with autism at a local level.

The coordination in the autism research community is unparalleled, and the IACC has played a critical role in fostering the growing list of promising public-private partnerships. Last fall, the mother of a child with autism spoke at an IACC meeting about the need to examine the high prevalence of autism in the Somali community in Minnesota reported in a state-funded study based on school data. Working collaboratively, several NIH Institutes, CDC, and Autism Speaks put together a research initiative to support investigation of the reported increase in ASD prevalence in the Minnesota Somali community and to identify the diverse service needs of these Somali-American children and their families.
As the Somali study illustrates, federal agencies recognize the autism challenge is not one we can tackle alone. There are a host of private organizations funding cutting-edge research, including four that hold a seat on the IACC – Autism Science Foundation, the Southwest Autism Research & Resources Center (SARRC) and the organizations identified by the recent IACC Portfolio Analysis as being the 2nd and 3rd largest private funders of research after NIH, Simons Foundation and Autism Speaks. Jointly, NIH, Autism Speaks, and Simons Foundation are driving several significant initiatives poised to accelerate the pace and quality of autism research. By developing the infrastructure and appropriate incentives, these public-private partnerships are encouraging data-sharing on an impressive scale, enabling scientists to do more with less. Additionally, NIH’s National Database for Autism Research (NDAR) is federating with several other autism data repositories such as the Autism Speaks’ Autism Genetic Resource Exchange (AGRE) and the public/private-funded Interactive Autism Network (IAN) to enhance researchers’ access to data. And in the community, programs like AGRE, IAN and the Autism Treatment Network (ATN), that involve direct outreach to and collaboration with the patient community, are bringing together hundreds of researchers and clinicians with tens of thousands of people nationwide affected by ASD in a search for answers.

Federal IACC member, ADD, with the help of non-profit organizations, including the Arc of the United States, the Autistic Self Advocacy Network (ASAN), and the Autism Society, recently launched the AutismNOW Project, an innovative dissemination network to provide access to high-quality resources and information on community-based services and interventions for people with ASD and their families. AutismNOW offers a call center, web-based clearinghouse of resources, twice-weekly webinars on a variety of topics related to autism, and regional events for the community to connect in-person.

Looking back over the past five years since the passage of the CAA, we can see how the establishment of the IACC has served to focus efforts across the federal government, bringing federal agency representatives (research, services, and education), parents, people with ASD, scientists, clinicians and others together to work as a team to address the issues, and bringing a wide variety of expertise to a difficult area. In doing so, it has produced a strategic plan to guide and focus federal research efforts and catalyze public private partnerships, while also providing a forum for public discussion and identification of additional needs from the community.

We have also seen some remarkable progress in the identification of how common ASD is within communities, how ASD develops, how we can detect it at increasingly earlier ages and what types of interventions are most effective, especially in young children. This research is rapidly moving toward translation into practical tools that can be used in the clinic and community settings to change outcomes for people with ASD. In this time span, federal agencies have coordinated efforts to enhance critical services programs, identify best practices to support the education, health and employment needs of people on the spectrum, and develop new mechanisms and strategies to enable broad access to healthcare, services and supports – all leading toward improvement in quality of life for people with ASD and their families.

The CAA established the IACC, to provide advice to the Secretary HHS regarding matters related to ASD, to create a forum where the public could be actively involved in the process, and to develop a strategy to guide national research efforts. While there has been unequivocal progress, much work remains to be done. The reauthorization will be critical for continuing the momentum and stability of the IACC over the next 3 years. It is crucial that members of the IACC—individuals, federal agencies and member private organizations—have stable support to continue their efforts to work together on autism issues.

I thank you for this opportunity to speak with you and look forward to addressing any questions that you may have.

Letter to Massachusetts DDS Commissioner Urging Elimination of Electric Shock, Other Aversives

19 Jul

The National Council on Disability (NCD) has sent a letter to the Massachusetts Department of Developmental Services Commissioner on electric shocks and other aversives. Massachusetts is the home of the Judge Rotenberg Center which uses electric shocks as a main part of their program.

July 18, 2011

Elin Howe, Commissioner
Department of Developmental Services
500 Harrison Avenue
Boston, Massachusetts 02118

COMMENTS OF THE NATIONAL COUNCIL ON DISABILITY IN SUPPORT OF PROPOSED AMENDMENTS TO REGULATIONS ON BEHAVIOR MODIFICATION AT 115 CMR 5.14[i]

The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other Federal agencies regarding laws, policies, practices, and procedures affecting people with disabilities. NCD strongly opposes the use of aversive treatments and accordingly submits these comments.

NCD has a longstanding history of opposing aversive treatments.[ii] As stated in NCD’s 1995 Report Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children,

While it is possible to understand the desperation of these parents, to share their exasperation with ineffective programs and treatments, and to sympathize with them in their frustration to locate appropriate programs, there are limits to what society can permit in the name of treatment. There are those in our society who would advocate for severe physical punishment or even the mutilation of prisoners convicted of what everyone would agree are heinous crimes. Yet these prisoners are afforded protection under the law from this treatment, even though there are those who would claim that such treatment would “teach them a lesson.” Students with severe behavioral disabilities are not criminals, and yet present law allows them to be subjected to procedures which cannot be used on the most hardened criminals, or, in some cases, even on animals.[iii]

NCD applauds the Massachusetts Department of Developmental Services (DDS) for taking steps toward drastically restricting use of aversive punishment, and we urge complete elimination of such methods. The use of electric shock is not a legitimate method of treatment for any person. Such measures – whose use against non-disabled individuals is already recognized as illegal and immoral – are contrary to the letter and the spirit of the Americans with Disabilities Act and the Developmental Disabilities Assistance and Bill of Rights Act. We urge the Department of Developmental Services to protect both future students and current ones from the use of contingent electric shock and all other such aversive techniques.

In light of the effect on children and youth and with disabilities nationwide, NCD is gravely concerned by the use of aversive treatments at the Judge Rotenberg Center (JRC), in Canton, Massachusetts — the only known school in the United States to provide such treatment. We are aware that students from an estimated 17 other states and the District of Columbia attend JRC and are therefore potential recipients of such aversive treatments.[iv] As such, NCD views this as a significant issue of national importance.

The treatment being provided at JRC is contrary to federal policy and the findings of mental health research. The 2003 President’s New Freedom Commission on Mental Health stated that restraint will be used only as safety interventions of last resort, not as treatment interventions.[v] Similarly, the US Department of Health and Human Services Substance Abuse (HHS) and Mental Health Administration (SAMHSA) has found that seclusion and restraints are detrimental to the recovery of persons with mental illnesses.[vi]

The practices of JRC are equally contrary to the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) which states in part:

“…The Federal Government and the States both have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that… meet minimum standards relating to- provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights and that subjects individuals with developmental disabilities to no greater risk of harm than others in the general population… and prohibition of the use of such restraint and seclusion as a punishment or as a substitute for a habilitation program…” (emphasis added).[vii]

The objectionable practices at JRC have not only attracted national attention but have also been scrutinized internationally. According to the United Nations Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, “. . . the term torture means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted . . . for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with consent or acquiescence of a public official or other person acting in an official capacity.”[viii]

In April 2010, Disability Rights International (formerly Mental Disability Rights International) issued an urgent appeal to the United Nations Special Rapporteur on Torture concerning the practices at JRC.[ix] Subsequently, in June 2010, the United Nations Special Rapporteur on Torture stated that the practices of the Judge Rotenberg Center in Canton, Massachusetts equate to torture and urged the US government to appeal.[x] The US Department of Justice (DOJ) is now investigating these, and other, allegations.[xi]

The regulations proposed by the Department of Developmental Services (DDS) send a strong message that aversive treatment should not be readily provided, but they must go further. It is critical that the DDS address the concerns identified here and supplement its regulations accordingly.

Thank you for considering our comments and recommendations. NCD stands ready to assist you in ways that our collaboration can best benefit students with disabilities and their families while promoting safe learning environments for all students across America. We are available to discuss these matters at your earliest convenience. Please contact me through NCD’s offices at (202) 272-2004.

Respectfully,

Ari Ne’eman
Policy and Program Evaluation Committee Chair
National Council on Disability

[i] With thanks to NCD Council Member Marylyn Howe and NCD Staff Robyn Powell for their invaluable support and assistance in research and drafting.

[ii] National Council on Disability, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves (2002), available at http://www.ncd.gov/publications/2000/Jan202000; National Council on Disability, Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children (1995), available at http://www.ncd.gov/publications/1995/09051995.

[iii] Id.

[iv] CNN, New York Education Officials Ban Shock Therapy (2006), available at http://articles.cnn.com/2006-06-21/politics/shock.therapy.school_1_shock-therapy-electric-shock-geds?_s=PM:EDUCATION.

[v] Mental Disability Rights International, Torture Not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (2010), 12, available at http://www.disabilityrightsintl.org/wordpress/wp-content/uploads/USReportandUrgentAppeal.pdf.

[vi] Id.

[vii] 42 U.S.C. § 15009(a)(3)(B)(i-iii) (2000).

[viii] UN General Assembly, Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Article 1(1), 10 December 1984, United Nations, Treaty Series, vol. 1465, p. 85, available at http://www.unhcr.org/refworld/docid/3ae6b3a94.html.

[ix] Mental Disability Rights International, Torture Not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (2010), 12, available at http://www.disabilityrightsintl.org/wordpress/wp-content/uploads/USReportandUrgentAppeal.pdf.

[x] ABC News/Nightline, UN Calls Treatment at Mass. School ‘Torture’ (2010), available at http://abcnews.go.com/Nightline/shock-therapy-massachussetts-school/story?id=11047334.

[xi] US Department of Justice, Assistant Attorney General for the Civil Rights Division Thomas E. Perez Speaks at the National Council on Independent Living Annual Conference (2010), available at http://www.justice.gov/crt/opa/pr/speeches/2010/crt-speech-100719.html.

Tomorrow: Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

18 Jul

The Interagency Autism Coordinating Committee (IACC) will hold a full committee meeting tomorrow, July 19th. The details are below and here.

The current version of the IACC was formed as part of the Combating Autism Act. That law sunsets in September and there is currently no reenactment legislation authorized. So, there is a possibility that this could be the last IACC meeting.

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

Reminder: Please join us for an IACC Full Committee meeting that will take place on Tuesday, July 19, 2011 from 10:00 a.m. to 5:00 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: The IACC meeting will feature invited speakers and discussion of committee business items including the 2011 IACC Summary of Advances, subcommittee activities related to seclusion and restraint, and an update on plans for the Fall 2011 IACC Services Workshop.

Meeting location:
The Bethesda Marriott – Google map imageMap and Directions
5151 Pooks Hill Road
Bethesda, MD 20814

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 800-369-1814
Access code: 7791752

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism

18 Jul

The results of the long-awaited California Autism Twin Study (CATS) have been published. The article, Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism appears in the Archives of General Psychiatry and is open-access (i.e. free). The study set out “To provide rigorous quantitative estimates of genetic heritability of autism and the effects of shared environment.”

The basic idea of a twin study is fairly straighforward: “identical” (or monozygotic, MZ) twins share 100% of their DNA, “fraternal” (dizygotic, or DZ) twins share about 50% of their DNA. If a condition is purely genetic, identical twins will both have the condition or not have the condition. The percentage of twins with a condition is called concordance. High concordance implies a highly genetic condition.

Early twin studies showed a high concordance. These studies were relatively small. The first study, Infantile autism: a genetic study of 21 twin pairs, was published in 1977 and included, as you might guess, only 21 twin pairs. Of these, 10 DZ and 11 MZ twins. There were three twin studies which made up the main body of knowledge suggesting a strong heritability of autism, including a total of 56 pairs.

The California Twin study sought to take a much closer look. First by including a much greater number of twin pairs, and second by including modern diagnostic methods. They used the California Department of Developmental Services as a resource to identify twin pairs with at least one autistic. The CDDS database has advantages and disadvantages. First, the database is large and covers fairly diverse state. This is important when you consider that (a) only about 1% of the population is autistic and (2) only about 3.2% of the population are twins. That means about 1 in 3000 are twins+autistic.

The disadvantages of the CDDS as a resource include the fact that not everyone with an ASD qualifies for services or is correctly classified. Of those who qualify, inclusion in the CDDS is voluntary. Technically, the CDDS serves only those with autistic disorder or those in the “fifth category” which includes “…disabling conditions found to be closely related to mental retardation or requiring treatment similar to that required for individuals with mental retardation.” This would limit the ability to identify ASD concordance. For example, twins who both have Asperger syndrome.

One major strength of the study was the use of clinical assessments plus parent interviews for diagnosis. They did not rely upon the CDDS reports for diagnoses. Also, the study determined twin status (MZ or DZ) through genetic testing, something which wasn’t available when the first twin studies were performed.

Here is the abstract for the study:

Context Autism is considered the most heritable of neurodevelopmental disorders, mainly because of the large difference in concordance rates between monozygotic and dizygotic twins.

Objective To provide rigorous quantitative estimates of genetic heritability of autism and the effects of shared environment.

Design, Setting, and Participants Twin pairs with at least 1 twin with an autism spectrum disorder (ASD) born between 1987 and 2004 were identified through the California Department of Developmental Services.

Main Outcome Measures Structured diagnostic assessments (Autism Diagnostic Interview–Revised and Autism Diagnostic Observation Schedule) were completed on 192 twin pairs. Concordance rates were calculated and parametric models were fitted for 2 definitions, 1 narrow (strict autism) and 1 broad (ASD).

Results For strict autism, probandwise concordance for male twins was 0.58 for 40 monozygotic pairs (95% confidence interval [CI], 0.42-0.74) and 0.21 for 31 dizygotic pairs (95% CI, 0.09-0.43); for female twins, the concordance was 0.60 for 7 monozygotic pairs (95% CI, 0.28-0.90) and 0.27 for 10 dizygotic pairs (95% CI, 0.09-0.69). For ASD, the probandwise concordance for male twins was 0.77 for 45 monozygotic pairs (95% CI, 0.65-0.86) and 0.31 for 45 dizygotic pairs (95% CI, 0.16-0.46); for female twins, the concordance was 0.50 for 9 monozygotic pairs (95% CI, 0.16-0.84) and 0.36 for 13 dizygotic pairs (95% CI, 0.11-0.60). A large proportion of the variance in liability can be explained by shared environmental factors (55%; 95% CI, 9%-81% for autism and 58%; 95% CI, 30%-80% for ASD) in addition to moderate genetic heritability (37%; 95% CI, 8%-84% for autism and 38%; 95% CI, 14%-67% for ASD).

Conclusion Susceptibility to ASD has moderate genetic heritability and a substantial shared twin environmental component.

The concordance values are 77% for male MZ twins and 50% for female MZ twins. These values are high. But the heritability estimates are influenced not just by the MZ twin concordance, but by the difference between MZ and DZ concordance. Consider if 100% of “identical” twins had a condition. This doesn’t necessarily mean that the condition is fully caused by hertiablity if, say, 100% of the “fraternal” twins also had the condition. In the California Twin study, DZ concordance values were relatively high (31% for males and 36% for females).

Based on these values, the authors calculate that shared environment accounts for 55% of the risk of autism and 37% for genetic heritability. There are big “error bars” (or confidence intervals) for the concordance and heritablity values. It is worth noting that the concordance values here are similar to those reported recently by Bearman’s team at Columbia (40-50% pairwise concordance for MZ twins. This study also used the CDDS as a resource, but did not use clinical assessments) and Goldsmith’s group at the University of Wisconsin (43% pairwise concordance). These studies also concluded that genetic heritability was lower than previously thought.

The authors concluded their paper:

Our study provides evidence that the rate of concordance in dizygotic twins may have been seriously underestimated in previous studies and the influence of genetic factors on the susceptibility to develop autism, overestimated. Because of the reported high heritability of autism, a major focus of research in autism has been on finding the underlying genetic causes, with less emphasis on potential environmental triggers or causes. The finding of significant influence of the shared environment, experiences that are common to both twin individuals, may be important for future research paradigms. Increasingly, evidence is accumulating that overt symptoms of autism emerge around the end of the first year of life. Because the prenatal environment and early postnatal environment are shared between twin individuals, we hypothesize that at least some of the environmental factors impacting susceptibility to autism exert their effect during this critical period of life. Nongenetic risk factors that may index environmental influences include parental age, low birth weight, multiple births, and maternal infections during pregnancy. Future studies that seek to elucidate such factors and their role in enhancing or suppressing genetic susceptibility are likely to enhance our understanding of autism.

The authors can be heard on KQED in San Francisco discussing the paper.

http://www.kqed.org/assets/flash/kqedplayer.swf

In a companion commentary on Archives of General Psychiatry, Is Autism, at Least in Part, a Disorder of Fetal Programming?, Peter Szatmari comments on the shift in perception based on the new heritability estimates: “The autism field can now join the chorus and ask, “Where did all the heritability go?” We now appear to have an answer, at least in part: those original estimates were inflated.”

“Inflated” seems a bit of a loaded word. There are big error bars on the current study, there were even bigger ones in the old studies. What I found very interesting was this peak at an upcoming paper by the Baby Siblings Research Consortium:

The high DZ concordance rate is consistent with estimates reported from the Baby Siblings Research Consortium. In these studies, infant siblings of children with ASD are followed up from birth to age 36 months so that risk can be calculated in a prospective fashion. The latest report from the Baby Siblings Research Consortium suggests that the risk is upwards of 20%, which is slightly less than the DZ rate provided by Hallmayer and colleagues (31%-36% for ASD). The confidence intervals of the estimates overlap to be sure, but this may also suggest potential ascertainment bias for concordant as opposed to nonconcordant DZ twin pairs or that twinning itself is a risk factor for ASD.

(reference: Ozonoff S, Young G, Carter AS, Messinger D, Yirmiya N, Zwaigenbaum L, Bryson SE, Carver L, Constantino J, Dobkins K, Hutman T, Iverson J, Landa R, Rogers S, Sigman M, Stone W. Recurrence risk for autism spectrum disorders: a Baby Siblings Research Consortium Study. Pediatrics. In press.)

They commentary poses some good questions about potential bias in the California Autism Twin Study:

One must ask whether there was any bias artificially reducing concordance in the study by Hallmayer and colleagues. One possibility is missing data, which are substantial. Another possibility is differential misclassification. It is not inconceivable that parents are more likely to rate MZ twins with a disability as more dissimilar than DZ twins. There may be an unconscious effort on their part to see one twin as less affected than the other. Such reporting effects, known as sibling deidentification, have been reported for twin studies of temperament.8 It would be extremely interesting to see whether concordance rates differ by instrument, ie, the Autism Diagnostic Interview–Revised, which is based on parental report, vs the Autism Diagnostic Observation Schedule, which is based on an independent observer. If the sensitivity of the measurement tool is less in MZ twins than in DZ twins, a smaller difference in observed concordance rates would be expected compared with true concordance rates based on no measurement error.

and:

A third threat to the validity of the findings is that twinning itself might be a risk factor for ASD, so that the heritability estimates generated would not be generalizable to the population of nontwin children with ASD. There may be some factor associated with twinning such as maternal age, coming from a monochoreonic placenta, prematurity, or in vitro fertilization that could place twins at risk for ASD. There is in fact some evidence that twins have a higher rate of autism than nontwins,9 but further work needs to be undertaken to provide better evidence.

It’s taken 34 years since the first autism twin study until the much larger California Autism Twin Study. This has been a time consuming and expensive undertaking. I doubt there will be a chance in the near future for a larger study to address the issues laid out above. This doesn’t preclude some other studies to clarify some questions, but the California Autism Twin Study will likely stand for some time before being challenged or confirmed.

iPads and the cheapskate, fearful autism father perspective

15 Jul

Ipads. They have gotten a lot of press in regards to helping autistics. I agree, they are a very good bit of technology. They give a piece of independence to many who might not be able to achieve it otherwise. There is no mouse, no need for typing for many things, an intuitive interface. What’s not to love?

Two things come readily to mind:

1) for the cheapskate in me, there is the cost. iPads run from about $500 on up.

2) for the fearful father in me: dang those things look fragile. They are relatively tough, sure. But read this post by Shannon Des Roches Rosa: iPad Destruction and Salvation. It is a story of fear, pain, redmeption, heroes…everything you could ask for in a blog post.

You see, those big, flat, beautiful screens are glass. Glass breaks. Sure, you can get one of those covers. The silicone ones run about $30 (see point one above: Sullivan the cheapskate). They give some protection and some peace of mind. But, still. They can come off. And there is a certain terror even with the cover on when you see a kid wandering off carrying an iPad by a corner across a tiled floor.

Yes, screens can be replaced. No, they can’t always be replaced. And, face it, Shannon was pretty darned lucky.

Here’s another option to consider that helps both (1) cheapskate-ism and (2) fear. Some places sell iPods and iPads that are refurbished. (team cheapskate approved!). Further, you can get protection plans. Including “accidental damage”. Here’s the language from Overstock.com’s accidental damage policy:

The Platinum Protection Plan protects against those unexpected spills, drops, and accidental handling, as well as mechanical or electrical failures. Platinum Protection coverage includes:

Unintentional spills
Unintentional drops & impacts
Screen damage for products w/LCD screens
Cracked lens for electronics w/lenses
Failures caused by defects in workmanship and materials
Damage caused by power surges

They don’t have iPads at the moment, but I recall seeing them a few weeks ago. There must be other places like this as well. I would double and triple check that the policy would cover accidental damage to the iPad screen before buying.

I checked with the chat feature today and here’s what they said:

Visitor: Does the platinum protection plan cover damage to ipads?
Visitor: I see: The plan will cover accidental damage only on laptops and hand- held electronics such as MP3 Players.

Visitor: Does an iPad count as “hand held electronics” or laptop?
Overstock.com: Yes, if it is offered for the item it will cover it. If there is no option to add the protection plan to the item then it would not be covered.

You might get overstock.com credit rather than a replacement, but that’s better than a dead iPad sitting in a closet mocking you.

I haven’t tested this, so again I urge people to make it clear in advance. And, in case anyone is wondering, the only connection I have to Overstock.com is as a consumer. I only use them as a ready example because I remember going through this pain 2 years ago when I purchased a refurbished iPod touch.

What’s up with Fox News and promoting bad autism science and medicine

15 Jul

OK, it’s anecdotal. But from my perspective of all the networks, Fox just seems to be the most open to bad science and medicine reporting. CBS has Sharyl Attkisson, and her work has been far from excellent over the years. But Fox just seems to be the “go-to” news outlet for those pushing vaccine causation and unproven medical treatments.

Case in point, Fox 9 in the Twin Cities. A recent story: Investigators: Hyperbaric Autism Care.

http://www.myfoxtwincities.com/video/videoplayer.swf?dppversion=10588

Investigators: Hyperbaric Autism Care: MyFoxTWINCITIES.com

There just isn’t any evidence that HBOT works for autism. There isn’t even a good theory for why it would work. Listen to the story, they basically have it right: the brain will absorb more oxygen. In turn this will help treat autism.

That’s about it for the theory: oxygen should be good. More should be better. I.e. hyperbarics will treat autism. When it goes by fast, it sounds like they have some idea what they are talking about. But there isn’t anything there.

Generation Rescue: taking another small step away from the brink?

14 Jul

Generation Rescue has over the years been one of the more vocal promoters of the vaccines-cause-autism notion. Like any organization, they have changed over the years and their website reflects that. Their website started out with the title “Autism Mercury Chelation” and a very simple (and wrong) statement:

Generation Rescue believes that childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning.

Of course, later during the early years of Jenny McCarthy, when Generation Rescue became “Jenny McCarthy’s autism organization. By this point, GR had a prominent link on the main page to “vaccines”. This included a page with Generation Rescue recommended vaccine schedules. Their “favorite” being a schedule that offered no protection against many diseases, including measles, mumps, rubella, pertussis, diptheria and tetanus.

They had a page of “science”, including statements claiming that Andrew Wakefield’s 1998 paper linked MMR to autism (a position Mr. Wakefield has tried to distance himself from in the past few years):

“This study demonstrates that the MMR vaccine triggered autistic behaviors and inflammatory bowel disease in autistic children.”

They had a science advisory board, which included S. Jill James, Ph.D., Richard Deth, Ph.D., Woody R. McGinnis, M.D. and Jerry Kartzinel, M.D.. Not exactly heavy hitters, but at least a couple of people who actually publish in journals.

Times have changed again. The website is revamped. And vaccines seem to be much less prominent. For example, in the current version of the Generation Rescue website, I can’t find “recommended” vaccine schedules (they refer people to Dr. Bob Sears). A search for Wakefield shows he is only mentioned once “Studies by researchers: Horvath, Wakefield, Levy, and Kushak highlight a myriad of gut problems present in children with autism, including abnormal stool (diarrhea, constipation), intestinal inflammation, and reduced enzyme function”. The science advisory board is down to one person (Jerry Kartzinel) and an unnamed “cohesive group of professionals committed to healing and preventing autism”.

Sure, it’s still not a place I would recommend to anyone, especially a parent who just found out their kid is autistic. But just a few short years ago the trajectory was increasing with the vaccine discussion, not decreasing.

Heavy Metal in Children’s Tooth Enamel: Related to Autism and Disruptive Behaviors?

11 Jul

The idea that mercury causes autism has been around for over 10 years now. The data have been overwhelmingly against the hypothesis. The risk of autism doesn’t increase with thimerosal exposure from vaccines (e.g. Prenatal and infant exposure to thimerosal from vaccines and immunoglobulins and risk of autism and a number of other studies.) There are still groups which promote the idea, and there are still studies being performed. Case in point, a new study: Heavy Metal in Children’s Tooth Enamel: Related to Autism and Disruptive Behaviors?

The idea is straightforward and one that has been used to promote the idea of vaccine/thimerosal causation. If baby teeth have a different level of mercury, that might say something about whether the child was (a) exposed to high levels of mercury and/or (b) whether the child was more or less able to excrete mercury.

Here is the abstract of the study:

To examine possible links between neurotoxicant exposure and neuropsychological disorders and child behavior, relative concentrations of lead, mercury, and manganese were examined in prenatal and postnatal enamel regions of deciduous teeth from children with Autism Spectrum Disorders (ASDs), high levels of disruptive behavior (HDB), and typically developing (TD) children. Using laser ablation inductively coupled plasma mass spectrometry, we found no significant differences in levels of these neurotoxicants for children with ASDs compared with TD children, but there was marginal significance indicating that children with ASDs have lower manganese levels. No significant differences emerged between children with HDB and TD children. The current findings challenge the notion that perinatal heavy metal exposure is a major contributor to the development of ASDs and HDB.

Basically, the levels of mercury and lead were the same for autistic kids as for non-autistic kids. There may be lower levels of manganese.

This isn’t the strongest, nor is it the last, study on mercury and autism. But, yet again, the evidence comes in against the idea that autism is caused by mercury.

A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population

8 Jul

The title for this article should have a question mark, “A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population?”. The paper’s faults have already been discussed, but I was unable to sleep earlier this week and I decided to graph some of the data. For some reason, even this didn’t help me to sleep.

A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population

here is the abstract:

The reason for the rapid rise of autism in the United States that began in the 1990s is a mystery. Although individuals probably have a genetic predisposition to develop autism, researchers suspect that one or more environmental triggers are also needed. One of those triggers might be the battery of vaccinations that young children receive. Using regression analysis and controlling for family income and ethnicity, the relationship between the proportion of children who received the recommended vaccines by age 2 years and the prevalence of autism (AUT) or speech or language impairment (SLI) in each U.S. state from 2001 and 2007 was determined. A positive and statistically significant relationship was found: The higher the proportion of children receiving recommended vaccinations, the higher was the prevalence of AUT or SLI. A 1% increase in vaccination was associated with an additional 680 children having AUT or SLI. Neither parental behavior nor access to care affected the results, since vaccination proportions were not significantly related (statistically) to any other disability or to the number of pediatricians in a U.S. state. The results suggest that although mercury has been removed from many vaccines, other culprits may link vaccines to autism. Further study into the relationship between vaccines and autism is warranted

The author made a number of strange decisions in this paper, as already discussed (and here, here, and here). First, she chose “autism prevalence” for her title when what she discussed was a combination of autism and speech or language impairment. So, I will put quotes around “autism” in “autism” prevalence, as this isn’t a real autism prevalence. Second, she chose a vaccination rate that is based on 100% completion of the 1995 vaccine schedule. This rate was changing notably, as she starts the study period when the schedule was introduced. So, as states and pediatricians and parents adopted the schedule, the “vaccination rate” as defined by the author increases notably. Again, I will use quotes around “vaccination rate” as this is an odd definition of the term.

Here is the main result of the paper:

The results suggest that if a given U.S. state has a 1% higher vaccination rate than another U.S. state, then the state with the higher vaccination rate might have, on average, a 1.7% higher prevalence of autism or speech disorder

With more than 4 × 10^6 babies born in the United States each year, this finding translates into an additional 680 children (= number of children [4 × 10^6] × coefficient [0.017] × 1% [0.01]) exhibiting autism or speech disorders for every 1% rise in children receiving the 4:3:1:3:3 series of vaccinations by age 2 years.

To put all this simply, the author is claiming that if there is some baseline prevalence of “autism” if the “vaccination rate” is 0, say 5%, then the prevalence rate of “autism” would be 5+1.7=6.7% if the “vaccination rate” were 100%.

One would expect that as “vaccination rates” go up or down, the “autism rate” would go up or down with this proportionality factor. It doesn’t happen that way, though.

The author used household income and ethnicity (%Hispanic, % African America, %Other) as variables in the model. Let’s assume that those numbers don’t change significantly during the time period considered for each state (the author appears to make this assumption, so let’s go with it.)

I took a look at the first 4 states in the table (listed alphabetically): Alabama, Alaska, Arizona and Arkansas. If anyone has a particular interest in any given state, I’ll graph them up (or you can do it yourself).

Here is the “vaccination rate” as a function of study year:

As Prometheus has noted, this rate shows the biggest change in the first two years. Given the result of the study, we should see the biggest changes in “autism rate” in these two years. But we don’t. I took the data for the “vaccine rates” as a function of time and applied the 1.7% increase in “autism” prevalence the author states as a result. Let’s look at these states and what the model predicts and what the actual data showed (click any graph to make bigger):

Alaska:

Alabama:

Arizona:

Arkansas:

The data not follow the predicted trends. Not even close. Not only that, but for two states, the predicted values are higher than the reported values (red curves higher than black) while for the other two states the opposite is seen.

This isn’t a case of “I don’t know how the analysis came to the conclusion but I don’t think it is right” type of paper. This is a case of “how did this get past an editor and referee” type of paper. It is just that clearly wrong.

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