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ARC: Action Alert: Call Today and Help Protect Federal Disability Programs

20 Sep

Last year the United States legislature avoided tough decisions by putting automatic spending cuts into the budget. The phrase “kick the can down the road” was common in the press in discussing the budget negotiations which were ongoing and now we are “down the road”: those cuts are slated to start in 2013. After the elections, I’ll point out. Discretionary programs will see substantial cuts unless the law is changed. Discretionary programs include special education and services for the disabled.

The ARC has put out an action alert to gather support to change the law to reduce those cuts:

Call Today: Help Protect Federal Disability Programs Take Action!
Today is Non-Defense Discretionary (NDD) Call Day

Take Action!

Background

While The Arc has been successful so far in its advocacy to prevent cuts to the Medicaid program, many other essential programs are facing severe reductions. The federal discretionary programs that people with disabilities rely upon to live in the community (early intervention, special education, supported employment, housing, transportation, and more) are slated for unprecedented cuts starting in 2013.

Last year’s Budget Control Act (BCA) will require non-defense discretionary programs to be cut dramatically, unless Congress changes the law. First, they will be cut by about 6% over a decade through the BCA’s spending caps. Then they are scheduled to be cut by an additional 8 % through the BCA’s across-the-board cuts (known as “sequestration”) starting in early 2013. The individual programs we care most about could possibly be cut by even greater amounts or eliminated entirely!

Examples of individual programs that could be cut are:

IDEA State Grant that assists the states in meeting the costs of providing special education and related services to children with disabilities.

DD Act Projects of National Significance (PNS) that enhance the independence, productivity, inclusion, and integration of people with developmental disabilities.

CDC National Center on Birth Defects and Developmental Disabilities that sponsors research and interventions to help children with disabilities to develop and reach their full potential, and promotes health and well-being among people of all ages with disabilities.

Section 811 Supportive Housing for People with Disabilities that creates affordable, accessible housing for low-income non-elderly people with the most serious disabilities to help them live independently in the community.

Take Action

Please call your Members of Congress and remind them of the importance of these critical programs. Click on the Take Action link above to get your Members’ office phone numbers.

Mitt Romney and the 47%

19 Sep

Mitt Romney, Republican candidate for President in the U.S., was secretly videotaped at a high end fundraiser earlier this year. Mother Jones released this video as part of their story:

SECRET VIDEO: Romney Tells Millionaire Donors What He REALLY Thinks of Obama Voters
When he doesn’t know a camera’s rolling, the GOP candidate shows his disdain for half of America.

The main paragraph that is getting a great deal of focus is this one:

There are 47 percent of the people who will vote for the president no matter what. All right, there are 47 percent who are with him, who are dependent upon government, who believe that they are victims, who believe the government has a responsibility to care for them, who believe that they are entitled to health care, to food, to housing, to you-name-it. That that’s an entitlement. And the government should give it to them. And they will vote for this president no matter what…These are people who pay no income tax.

Mr. Romney is incorrect on a number of facts and interpretations, as has been covered in many places.

In addition to the groups who are incorrectly characterized by Mr. Romney, there are people like my kid. Someone who is dependent on the people of the United States for support. First, remember, Mr. Romney, we are the government? I thought that was a Republican viewpoint. My kid being dependent on the people for support is the same as being dependent on the government.

My kid may never pay income tax. This is true. But I do. And I vote. And I don’t like my kid being your scapegoat.

Interagency Autism Coordinating Committee’s (IACC) Services Research and Policy Subcommittee Conference Call and Webinar

10 Sep

The Services Research and Policy Subcommittee of the U.S. Interagency Autism Coordinating Committee (IACC) will hold a conference call on Wednesday. More details can be found here.

Interagency Autism Coordinating Committee’s (IACC) Services Research and Policy Subcommittee Conference Call and Webinar

Please join us for a conference call and webinar of the IACC’s Services Research and Policy Subcommittee on Wednesday, September 19, 2012 from 10:00a.m. to 2:00p.m. ET. The subcommittee will discuss plans for developing a 2012 IACC Strategic Plan Progress Update that will describe recent progress that has been made in the autism field and identify remaining gap areas in research.

The phone number and access code for the call and the webinar link are provided below. 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: 800-369-3130
Access code: 1524980

Webinar Access
https://www2.gotomeeting.com/register/427830826

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 below at least five 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, 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 6182A
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

—
By Matt Carey

Note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

NIH awards $100 million for Autism Centers of Excellence Program

7 Sep

The U.S. National Institutes of Health (NIH) Have awarded $100 million over five years to the next Autism Centers of Excellence (ACE). The press release discussing the groups and their focus is below:

NIH awards $100 million for Autism Centers of Excellence Program
Nine grantees receive research funding over next five years

The National Institutes of Health has announced grant awards of $100 million over five years for the Autism Centers of Excellence (ACE) research program, which will feature projects investigating sex differences in autism spectrum disorders, or ASD, and investigating ASD and limited speech.

The disorders are complex developmental disorders that affect how a person behaves, interacts with others, communicates and learns. According to the Centers for Disease Control and Prevention, ASD affects approximately 1 in 88 children in the United States.

NIH created the ACE Program in 2007 to launch an intense and coordinated research program into the causes of ASD and to find new treatments.

“The ACE program allows NIH institutes to leverage their resources to support the large collaborative efforts needed to advance the broad research goals of the Interagency Coordinating Committee Strategic Plan for ASD research,” said Alice Kau, Ph.D., of the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), one of five institutes funding the ACE program. “This year, the program has expanded to such areas as children and adults who have limited, or no speech, possible links between ASD and other genetic syndromes, potential treatments and the possible reasons why ASD are more common among boys than girls.”

In addition to the NICHD, the NIH institutes that support the ACE program are the National Institute on Deafness and Other Communication Disorders, the National Institute of Environmental Health Sciences, the National Institute of Mental Health and the National Institute of Neurological Disorders and Stroke.

The nine awards for 2012 will support research at individual centers or at research networks, which involve multiple institutions, dedicated to the study of ASD.

Grants were awarded to research teams led by the following investigators:

2012 Center Grants

Susan Bookheimer, Ph.D. (University of California, Los Angeles)—This research group will use brain imaging technology to chart brain development among individuals having genes suspected of contributing to ASD. The researchers hope to link genetic variants to distinct patterns of brain development, structure and function in ASDs. Researchers in this center also are investigating treatments that will improve social behavior and attention in infants and acquisition of language in older children with ASD.

Ami Klin, Ph.D. (Emory University, Atlanta)—The Emory team will investigate risk and resilience in ASD, such as identifying factors associated with positive outcomes or social disability, starting in 1-month-old infants and will begin treatment in 12 month olds in randomized clinical trials. Through parallel studies in model systems, the researchers will chart brain development of neural networks involved in social interaction. This center will increase understanding of how ASD unfolds across early development.

Helen Tager–Flusberg, Ph.D. (Boston University)—Many individuals with ASD fail to acquire spoken language, and little is known about why this is so. This research team will use brain imaging technologies in an effort to understand why these individuals do not learn to speak, with the goal of helping them to overcome this limitation. The research team will also test new approaches to help young children with ASD acquire language.

2012 Network Grants

Connie Kasari, Ph.D. (University of California, Los Angeles)—This network will compare two types of intensive, daily instruction for children with ASD who use only minimal verbal communication. Earlier research has shown that even after early language-skills training, about one-third of school aged children with ASD remain minimally verbal. Researchers plan to enroll 200 children in four cities: Los Angeles, Nashville New York City, and Rochester, N.Y.

Kevin Pelphrey, Ph.D. (Yale University, New Haven, Conn.)—A team of researchers from Yale, UCLA, Harvard, and the University of Washington will investigate the poorly understood nature of ASD in females. The project will study a larger sample of girls with autism than has been studied previously, and will focus on genes, brain function, and behavior throughout childhood and adolescence. The objectives are to identify causes of ASD and develop new treatments. According to the U.S. Centers for Disease Control and Prevention, ASD are almost 5 times more common among boys (1 in 54) than among girls (1 in 252).

Joseph Piven, M.D. (University of North Carolina at Chapel Hill)—This research group previously used brain imaging to show atypical brain development at age 6 months in infants who were later diagnosed with ASD. The group now plans to follow another group of infants at risk for ASD. In this study, they will do more frequent scans throughout infancy and until age 2, to gain a greater understanding of early brain development in children with ASD.

Abraham Reichenberg, Ph.D. (Mount Sinai School of Medicine, New York City)—Researchers in this network will embark on an ambitious attempt to understand how genetic and environmental factors influence the development of autism. The researchers will analyze detailed records and biospecimens from 4.5 million births involving 20,000 cases of ASD, from 7 countries (the United States, Australia, Denmark, Finland, Israel, Norway, and Sweden.) The analysis will span three generations and involve grandparents, parents, aunts, uncles, and siblings and cousins.

Mustafa Sahin, M.D., Ph.D. (Harvard Medical School, Boston) and Darcy Krueger, M.D., Ph.D. (Cincinnati Children’s Hospital and University of Cincinnati)—This network will recruit patients with tuberous sclerosis complex, a rare genetic disease that causes tumors in the brain and other vital organs. Patients with tuberous sclerosis complex have an increased risk for developing autism. The researchers will track brain development in infants diagnosed with tuberous sclerosis complex, to gain insights into how autism develops.

Linmarie Sikich, M.D. (University of North Carolina at Chapel Hill)—The researchers will test whether treatment with oxytocin nasal spray can improve social interaction and communication in children with ASD. Oxytocin is a neuropeptide (used by brain cells to communicate) and has been associated with social behaviors. The researchers plan to enroll 300 children with ASD between 3 and 17 years old from Boston, Chapel Hill and Durham, N.C.; Nashville, New York City, and Seattle.

Additional information about ASD is available at http://health.nih.gov/topic/Autism.

About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; intellectual and developmental disabilities; and medical rehabilitation. For more information, visit the Institute’s website at http://www.nichd.nih.gov/.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

—
By Matt Carey

Note: this was originally published without a title

Republican Mark Ewing: “there are certain individuals that are just not going to benefit from an education”

27 Aug

Mark Ewing is a republican politician in Alaska. He is running for the state house. He recently expressed views on special education which I would politely say I disagree with:

” We are spending millions and millions of dollars educating children that have a hard time making their wheelchair move and, I’m sorry, but you’ve got to say, ‘no’ somewhere. We need to educate our children, but there are certain individuals that are just not going to benefit from an education”

I wanted Mr. Ewing to elaborate on this statement so I sent him the following email:

Mr. Ewing,

Can I confirm this quote attributed to you:

” We are spending millions and millions of dollars educating children that have a hard time making their wheelchair move and, I’m sorry, but you’ve got to say, ‘no’ somewhere. We need to educate our children, but there are certain individuals that are just not going to benefit from an education”

If this is accurate, can you elaborate? How do you define “benefit from education”? I suspect someone has discussed with you by now how many people in wheelchairs, even those with the motor difficulties that might prohibit controlling the chair, are cognitively capable of “benefiting” from education academically. What would be your position on a public school educating nonverbal child to give that child the ability to communicate more effectively, even if that child may not be “benefiting” in the academic sense?

Could I ask how you fit the above sentiment with the Alaska Republican Party platform, which states: ” Parents have the primary right, as well as the duty, to control and direct their children’s education”. Wouldn’t the state deciding that a child should not be educated conflict with the platform?

I thank you for your time,

No response as yet.

Mr. Ewing isn’t completely disconnected from the disabilities community. His son reportedly had “mental health problems”.

Mr. Ewing apparently tried to rewrite history, claiming he said something slightly different. His hometown paper posted the audio, together with a commentary on the alleged blameshifting Mr. Ewing has engaged in.

—
By Matt Carey

“We want respect”: adults with intellectual and developmental disabilities address respect in research.

21 Aug

The concepts of neurodiversity are not complex and yet are often misunderstood and misrepresented. Respect is not a difficult concept. The need for research to respect those who are the focus is not difficult.  Respect includes aknowleging that disability does not disenfranchise a person from her human rights. Respect means including the views and opinions of those involved in the research, even if they are intellectually disabled.

Consider this recent study:

“We want respect”: adults with intellectual and developmental disabilities address respect in research.

Abstract Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.

For emphasis: ” . Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity.”

Call it “human rights and dignity” and it isn’t a controversial concept. It may not be always followed but it isn’t controversial. Call it “neurodiversity” and somehow it’s a big deal.

One of the misconceptions I’ve read is that neurodiversity is a topic for so-called “high functioning” autistics. Many comments have come through this site calling my child “high functioning” because of the views expressed here. (Those commenters assumed incorrectly).  Here’a something to consider: the study noted above not only focuses on people with intellectual disability, it makes no mention of autism in the abstract.   The study did not even come through in my daily email of pubmed autism abstracts.

Announcing Release of the final IACC/OARC Autism Spectrum Disorder Research Publications Analysis Report: The Global Landscape of Autism Research

17 Aug

The Office of Autism Research Coordination has published a final version of the IACC/OARC report “The Global Landscape of Autism Research”. The announcement is below:

The Interagency Autism Coordinating Committee (IACC) and the Office of Autism Research Coordination (OARC) in collaboration with Thomson Reuters, Inc. are pleased to announce the release of the final IACC/OARC Autism Spectrum Disorder Research Publications Analysis Report: The Global Landscape of Autism Research. This final report replaces the pre-publication draft, which was released on July 9, 2012. The final report contains all final content, including high resolution figures and supplementary appendix information. If you have a hard copy of the pre-publication draft and would like to replace it with a hard copy of the final report, or if you would like to order a free copy of the final report, please send a note to IACCPublicInquiries@mail.nih.gov.

This inaugural report describes several key aspects of worldwide ASD research publications, which can be used to inform autism research strategic planning efforts. The report includes data encompassing biomedical, biological, behavioral, clinical, educational, social sciences, and health services research. ASD-related research articles published between 1980 and 2010 were analyzed to identify historical trends and publication outputs across the seven critical research areas of the 2011 IACC Strategic Plan for Autism Spectrum Disorder Research. Information found in research publications was also used to assess the institutions conducting ASD research, funding organizations supporting the research publications, and the extent of collaboration between authors from different countries and research institutions. Additionally, measures such as citation counts were used as an assessment of the impact of this published research. By analyzing publications as a major output of the autism research field, this report complements the annual IACC Autism Spectrum Disorder Research Portfolio Analysis Report, which tracks major US inputs or investments into autism research, and highlights trends that can provide a useful perspective on the development and current state of ASD research. A fully formatted, downloadable PDF of the IACC/OARC Publications Analysis is available on the IACC website at http://iacc.hhs.gov/publications-analysis/july2012/index.shtml.”

Note: I serve as a public member to the IACC, but all opinions expressed here and elsewhere by me are my own.

—
By Matt Carey

How Americans would slim down public education

12 Aug

With economic troubles in the U.S. and worldwide continuing for years, schools are facing tough decisions.  A recent survey, How Americans would slim down public education, in the U.S. taps into the public’s support for education in general and also for special education. 

With budget shortfalls predicted for schools (at least in the area I know best: California) people are thinking of how to react in case of budget shortfalls.  There is no support for increasing taxes to support schools, instead “dramatically changing how [schools] do business”:

End Business as Usual
Which would be the best approach for your district to take if it was facing a serious budget deficit?

48% Cut costs by dramatically changing how it does business.

26% Change as little as possible; wait for times to get better

11% Rely on tax increases

7%  Something else

8%  Don’t know

Which begs the question of how dramatic changes might affect special education.  While there is broad support for special education, there is a strong sentiment that there are children in special ed who do not belong:

When it comes to budget cuts, special education is not immune as far as most Americans are concerned. That’s not to say the commitment of Americans to educate children with special needs is waning—it’s not. But they have concerns about the growth, cost, and effectiveness of serving these kids well.

The overwhelming majority of the public, 83 percent, believes that “the public schools have a moral obligation to educate kids with special needs and learning disabilities, even if it’s more difficult and expensive to do so.”

76 percent believe that “too many students are being mislabeled as having special needs when they just have behavior problems or weren’t taught well in the first place.”

71 percent believe that special education programs should be “evaluated according to whether they help students learn—when students don’t learn, the programs should be replaced

The public is split on supporting the law’s provisions that cost should not be a factor in deciding a special education placement:

According to federal law, districts are required to provide special education services, but they are not allowed to consider the costs of those services. Do you think districts should be allowed to weigh costs when considering which special education services to choose, or do you think the law should be left as is?

44 Districts should be allowed to weigh costs when considering which special education services to choose

47 The law should be left as is

9 [Vol.] Don’t know

There is a lot more discussion in the report on ways schools could (e.g. cut pay, change retirement) and should not (e.g. lay off faculty) reduce costs. More can be found in the report.

Most people think that their schools are an asset to thrir community , but also that the schools have been hit hard by the recession and (77%) that the financial problems will last a long time.

__
By Matt Carey

What projects are being funded in autism research? Part 2: Expanded Surveillance

3 Aug

At the IACC meeting OARC released it’s new IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool. There are many ways to explore what research is being performed. Since the CDC autism prevalence estimates get a lot of attention, it seemed valuable to see what is in the pipeline with them. The CDC estimates are made through ADDM, the Autism and Developmental Disabilities Monitoring Network, which is largely sites in various states working with the CDC, not the CDC itself.

One can search for ADDM for 2009 and 2010 projects.

In 2009 there were projects ongoing in Alabama, Arizona, Arkansas, Colorado, Florida, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah and Wisconsin, as well as the Metropolitan Atlanta Developmental Disabilities Surveillance Program/Autism and Developmental Disabilities Monitoring (ADDM) network – Georgia.

13 states plus the Metro Atlanta study.

The latest prevalence estimate report from the CDC included 14 sites: Alabama, Arizona, Arkansas, Colorado, Florida, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia, and Wisconsin. West Virginia appears to no longer be a part of the study.

In 2010 there were projects ongoing in 11 states plus the metro Atlanta site. Florida and Pennsylvania are no longer funded.

Now, here’s where it get’s interesting. At least to this reader. There are “expanded” projects in 2010:

Through surveillance of ASD among 4-year-old children, CDC can better understand the population characteristics of young children affected by ASDs and better inform early identification efforts.

Arizona, Missouri, New Jersey, South Carolina, Utah and Wisconsin are starting to count 4 year-olds as well as 8 year olds. This will be a good thing. As they say, this will inform early-intervention efforts. This will also benchmark 4 year olds, then (I assume) 4 years later find out what that same cohort looks like.

The CDC autism prevalence estimate reports find a large number of autistic students unidentified even at age 8. They are identified through the records review of the ADDM. This and other studies raise the question of what factors are involved with delays in autism diagnosis. A study is ongoing to answer just that question: Understanding the delay in the diagnosis of autism. The study has already resulted in numerous publications.

The Strategic Plan calls for even more expansion of the ADDM:

Expand the number of ADDM sites in order to conduct ASD surveillance in children and adults; conduct complementary direct screening to inform completeness of ongoing surveillance; and expand efforts to include autism subtypes by 2015.

Expanding to include adults is a good idea, but extremely tough. The current method uses educational and medical records of students. Obviously educational records will not be available for adults. This will make it difficult to make comparisons between adults and children in the same state. Most likely, the estimate will be lower than the actual autism prevalence in adults.

There is a study by the Mayo Clinic on adult autism prevalence and at least one more I am aware of.

Surveillance efforts are expanding into better identification of young children outside of ADDM. Two studies, the California Monitoring of Early Childhood Autism (CA-MECA) and the First Words Project: Implementing Surveillance to Determine the Prevalence of ASD project in Florida. Both are looking at young children (<4 years old) or infants (as young as 18 months). Both studies have been ongoing since 2006.

Studies are ongoing outside the U.S.. Including an Autism Speaks funded study in Kwa Zulu Natal (South Africa). KwaZulu-Natal (KZN) Autism Study will “…test how best to identify and assess children with ASD in the Zulu language and culture, explore the prevalence of autism in South Africa, and further explore the hypothesized relationship between autism and HIV infection.” The Korea Autism Study (also funded by Autism Speaks), which last year announced a prevalence of 2.62% using a whole-population screen, is ongoing.

Surveillance projects will generate questions, and that has definitely happened with autism surveillance work. Questions of why the estimated prevalences are increasing and why some groups are identified later than others are a couple of the big ones. Based on this quick look through the ongoing projects, there appear to be a number of projects in the pipeline which will probably shed some light on existing questions as well as spark new ones.

—
by Matt Carey

What projects are being funded in autism research? Part 1: vaccines and GI issues

23 Jul

The Office of Autism Research Coordination (OARC) rolled out a new web-based tool to explore research projects in autism. The IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool has already been discussed here at Left Brain/Right Brain, but I thought it was worth doing some exploring using the tool. In particular, let’s see what, if anything, is happening in some of the “hot button” issues from some segments of the online parent community.

I put in simple search terms. First was “gastrointestinal”. I found 11 projects ongoing in 2009 and 14 projects being funded in 2010. There is some overlap between the two years (as you would expect), and some projects mention the term “gastrointestinal” but are not focused on the topic (for example, this project on treating sleep issues in autistic children). But this project, Analysis of the small intestinal microbiome of children with autism, would seem to be right on target for what many parents are asking for. As is Novel probiotic therapies for autism. Much of the discussion of gastrointestinal function in autistics seems to be focused on the “leaky gut” theory. I would think that this study (noted in detail below) would be of particular interest to many.

Are autism spectrum disorders associated with leaky-gut at an early critical period in development?

Although there is general consensus of greater prevalence of gastrointestinal (GI) distress in individuals with autism spectrum disorders (ASD), the nature of the link is unknown. There is preliminary evidence to suggest that GI distress in ASD may be associated with “Leaky-Gut” (i.e., increased permeability of the intestinal mucosal barrier due to either delayed or abnormal development), as shown by a study showing higher-than-normal prevalence in ASD children 4 – 16 years of age (e.g., D’Eufemia et al., 1996). During normal digestion, the mucosal barrier is responsible for keeping digestive enzymes out of the intestinal wall. Recent evidence shows that if these powerful degrading enzymes enter the wall of the intestine, they will cause major damage to the intestinal wall as well as inflammation in the brain. Investigators hypothesize that ASD may be associated with Leaky-Gut early in development, which combines, or interacts, with diet (breast-milk, formula, solid foods) leading to intestinal wall damage and inflammation in: 1) the intestine, which could explain the GI distress, and 2) in the bloodstream, which could reach and damage the developing brain, thus contributing to the onset of ASD itself. In this study, researchers will track key aspects of GI function in Low-Risk and “High-Risk” infants (i.e., infants who have an older sibling diagnosed with ASD), including: 1) signs of Leaky-Gut, 2) symptoms of GI distress (e.g., diarrhea, reflux, constipation), 3) diet (breast-milk vs. formula), and 4) evidence of digestive enzymes and inflammatory markers of cell death in the bloodstream. They will correlate GI, diet, and inflammatory measures with results from cognitive, visual, and behavioral tests, including standard ASD diagnostic tests, at two and three years of age to determine if Leaky-Gut is associated with the development of ASD.

How about vaccines? Four projects in 2009, four in 2010. Three of those projects are the same from 2009 to 2010, and those three are funded by Autism Speaks. Two are funded by the Federal Government: Vaccine safety datalink thimerosol and autism study and A primate model of gut, immune, and CNS response to childhood vaccines. The second of those projects is, I believe, a follow-on study to the Laura Hewitson primate study (many supporters of that work complain that there has been no follow on to it)

While we are at it, there are four studies mentioning “mercury” in 2009, nine in 2010 (granted, in 2010 research funded by SafeMinds was added to the database. As they are a major proponent of the mercury hypothesis, it isn’t surprising that four of these studies were funded by them).

I am reminded of past criticisms about environmental risk factors levied at the IACC. In past years there was a discussion point that the IACC Strategic Plan did not include an emphasis on environmental risk factors for autism. A simple review of the strategic plan showed this not to be the case. Oddly enough, one could not find discussion of the facts on the websites of those claiming to be calling for environmental risk factor research, only here at Left Brain/Right Brain.

It has also been discussed here that the IACC does not control the research budgets and no direct control over what projects actually get funded. The IACC is an advisory committee. The fact that most research project items in the Strategic Plan do get funded suggests that the IACC is an effective advisory group.

—
by Matt Carey

note: I serve as a public member to the IACC, but my opinions and comments (even those about the IACC) are my own.

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