Saturday, March 07, 2009

A Canadian Autism Dad Says Thank You To The IACC

My friend Jonathan Mitchell, author of the Autism's Gadfly, blog, challenges the right of non-Americans to make demands of the IACC which has released The Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 26, 2009.

I agree with Jonathan that Canadians, British and other non-Americans have no right to demand anything from American tax payer funded institutions. The IACC plan, after all, is distributing American tax dollars. At the same time we enjoy freedom of speech in our countries as well and the world wide web makes all of our opinions available for consumption. American agencies such as the IACC may choose to review our opinions , or not , as they determine appropriate. But we have the right in our countries to express our opinions, albeit we should all do so with proper respect for , and in the context of, jurisdictional issues such as those raised by Jonathan.

American health and research authorities have generally, in my opinion, made valuable contributions to the lives of autistic children and adults in Canada. I am pleased that the IACC has adopted a strategic plan which makes this positive influence likely to continue. In my humble opinion the plan might even enhance the positive role of American researchers and public health authorities in the lives of autistic children and adults in Canada and other countries. The world's knowledge of autism itself, of its causes and possible treatments and cures, will likely be substantially increased with the realization of this strategic plan.

The plan covers a lot of ground, it is balanced and comprehensive in its scope. It is respectful of diverse perspectives and suggests an accommodation of those perspectives in effective autism research initiatives. On an initial reading of the IACC plan there are a number of points that jump out at me. There is too much to canvass in this post. Everyone should read the plan themselves and review it.

I will make several comments about the various elements of the plan in subsequent posts but first and foremost I am impressed by the focus on attempting to find causes and cures for autism disorders, to help improve the lives of autistic persons and their families.

Overall I am very pleased with the research emphasis on possible environmental factors in causing or triggering autism disorders:

What do we need?

Although most scientists believe that risk factors for ASD are both genetic and environmental, there is considerable debate about whether potential environmental causes, genetic precursors, or interactions between genes and environmental factors should be the highest priority for research aimed at identifying the causes of ASD. To date, few studies have ruled in or ruled out specific environmental factors. While there are reports of associations of ASD with exposure to medications or toxicants prenatally, and to infections after birth, it is still not known whether any specific factor is necessary or sufficient to cause ASD. Similar to other disease areas, advancing research on the potential role of environmental factors requires resources and the attraction of scientific expertise. Bringing this to bear on autism will help focus the environmental factors to study, as well as the best approach for staging studies to examine environmental factors, interaction between factors, and between individual susceptibility and various environmental factors.

For example, some researchers believe that it is important to study a large number of exposures, or classes of exposure, that are known to affect brain development. Others support more tightly focused studies of one exposure or a limited number of exposures, with greatest biologic plausibility for interacting with known or suspected biologic or genetic ASD risk factors. In addition, it is also important to design studies that assess environmental exposure during the most relevant exposure windows: pregnancy and early development. In doing this research, it will be important for the field to develop sound standards for identifying and claiming that environmental factors contribute to ASD, as it would be for genetics.

To address public concerns regarding a possible vaccine/ASD link, it will be important over the next year for the IACC to engage the National Vaccine Advisory Committee (NVAC) in mutually informative dialogues. The NVAC is a Federal advisory committee chartered to advise and make recommendations regarding the National Vaccine Program. Communication between the IACC and NVAC will permit each group to be informed by the expertise of the other, enhance coordination and foster more effective use of research resources on topics of mutual interest. Examples of such topics include: studies of the possible role of vaccines, vaccine components, and multiple vaccine administration in ASD causation and severity through a variety of approaches; and assessing the feasibility and design of an epidemiological study to determine whether health outcomes, including ASD, differ among populations with vaccinated, unvaccinated, and alternatively vaccinated groups.

Aspirational Goal: Causes of ASD will be Discovered that Inform Prognosis and Treatments and Lead to Prevention/Preemption of the Challenges and Disabilities Of ASD

Research Opportunities

* Genomic variations in ASD and the symptom profiles associated with these variations.

* Environmental influences in ASD and the symptom profiles associated with these influences.

* Family studies of the broader autism phenotype that can inform and define the heritability of ASD.

* Studies in simplex families that inform and define de novo gene differences and the role of the environment in inducing these differences.

* Standardized methods for collecting and storing biospecimen resources from well-characterized people with ASD as well as a comparison group for use in biologic, environmental and genetic studies of ASD.

* Case-control studies of unique subpopulations of people with ASD that identify novel risk factors.

* Monitor the scientific literature regarding possible associations of vaccines and other environmental factors (e.g., ultrasound, pesticides, pollutants) with ASD to identify emerging opportunities for research and indicated studies.

* Environmental and biological risk factors during pre- and early post-natal development in "at risk" samples.

* Cross-disciplinary collaborative efforts to identify and analyze biological mechanisms that underlie the interplay of genetic and environmental factors relevant to the risk and development of ASD, including co-occurring conditions.

* Convene ASD researchers on a regular basis to develop strategies and approaches for understanding gene - environment interactions.

* Exposure assessment -- efficient and accurate measures of key exposures for use in population and clinic based studies and standards for sample collection, storage, and analysis of biological materials.

Short-Term Objectives

* Initiate studies on at least five environmental factors identified in the recommendations from the 2007 IOM report "Autism and the Environment: Challenges and Opportunities for Research" as potential causes of ASD by 2010. IACC Recommended Budget: $23,600,000 over 2 years.

* Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. IACC Recommended Budget: $43,700,000 over 4 years.

* Within the highest priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011. IACC Recommended Budget: $3,500,000 over 3 years.

* Initiate efforts to expand existing large case-control and other studies to enhance capabilities for targeted gene - environment research by 2011. IACC Recommended Budget: $27,800,000 over 5 years.

* Enhance existing case-control studies to enroll broad ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years.

Long-Term Objectives

* Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. IACC Recommended Budget: $25,100,000 over 7 years.

* Conduct a multi-site study of the subsequent pregnancies of 1,000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. IACC Recommended Budget: $11,100,000 over 5 years.

* Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years.

* Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. IACC Recommended Budget: $44,400,000 over 5 years.

The environmental focus of the strategic plan includes possible vaccine-autism connections. As one who is undecided on the vaccine-autism connections I believe this is a positive step forward. Anyone wishing to explore this issue in should read David Kirby's essay on the Huffington Post US Health Officials Back Study Idea on Vaccinated vs. Unvaccinated Children - Will Media Take Note?. The IACC strategic plan expressly states that it will consult with the National Vaccine Advisory Committee whose recommendations are reviewed by Mr Kirby in his article.

Ten years after Teresa Binstock complained about the "it's gotta be genetic" model of officially funded autism research and the impairment of our knowledge of autism causes, and possible treatments that results from that model, it appears that the IACC is moving toward a balanced genetic-environmental paradigm of autism research. The genetic-environmental paradigm embraced fully by the IACC bodes well for our future understanding of, and ability to treat, autism disorders. The Autism Knowledge Revolution is poised to pick up steam.

For this balanced, comprehensive strategic plan this Canadian father of a 13 year old year old with autistic disorder makes no demands but says thank you to the IACC and our American friends.

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farmwifetwo said...

I'm hoping somewhere in there they also look into prenatal care. I have concerns regarding ultrasounds, prenatal health of the Mother - ie high blood pressure, just b/c you can keep a child in the womb - should you?, induction drugs... and I'm certain their are more interventions.

I'm not getting into the C-section debate since IMO with both my boys there was no other option for both their and my health.


Anonymous said...

Any world consumer of American vaccines has a stake in proper and ethical management of vaccine safety.

shakingsystem said...

Hopefully this initiative is a step in the right direction.

The 'door' of hope is opened, slightly ajar. The families of children with autism have a reason to finally move 10 steps forward in the name of autism research.

Let's hope 'others' will emulate this positive endeavor and finally seek answers to all the unanswered questions that keep dwelling and haunting our minds.