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IACC: what caused this and can it be prevented

24 Sep

I bet you thought the nagging was over after this post. Nope, that was for the “services subcommittee”.

There is another deadline still out there–the end of September. That’s when comments are due for the big one–the Strategic Plan.

We’ve discussed two sections so far: “When should I be concerned” and “How can I understand what’s happening“. But, there are another four sections! Plus, there’s the question of vaccines.

The entire draft Strategic Plan is public.

The third section is “What causes this to happen”. This has the “aspirational goal” of:

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

As before, instead of copying the entire section, I am taking just the “Research Opportunities” and the “goals” for discussion. First the research opportunities:

Research Opportunities
• Genetic sequence variations in ASD and the symptom profiles associated with these variations.
• Family studies of the broader autism phenotype that can inform and define the heritability of ASD.
• Standardized methods for collecting and storing biospecimen resources from well-characterized individuals 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 living 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.
• 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 us in population and clinic based studies and standards for sample collection, storage, and analysis of biological materials.

OK, inside there is one of the land-mines of the Strategic Plan: vaccines. Let’s pull that out:

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.

Some people would like to see even more discussion of vaccines. Frankly, I would like to see this section taken out. Of course they will monitor the literature for environmental factors–as well as monitor the literature for any big new discoveries in autism. The Strategic Plan doesn’t limit the NIH or any other governmental agency from exploring a subject that isn’t written in the Plan.

If you agree, send the IACC an email. Just click the link and send them a short note that vaccines don’t need to be mentioned explicitly in the Plan.

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.
• 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.
• Within the highest priority categories of exposures for ASD, validate and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011.

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 2012.
• Conduct a multi-site study of the subsequent pregnancies of 1000 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.
• Identify genetic risk factors in at least 50% of children with ASD by 2014.
• Support ancillary studies within one or more large-scale, population-based epidemiological studies, 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.

The first short term goal refers to the IOM report “Autism and the Environment: Challenges and Opportunities for Research”. This is a transcript of a meeting held to discuss environmental contributions to autism. This report is sometimes misrepresented. If you head the Omnibus proceedings, you know what I mean. The PSC lawyers acted as though this was on a par with the 2004 IOM report on vaccines and autism, discussing the conclusions of the report. (Hint–it is a transcript of personal opinions of the participants).

That aside, this is a big section of the Plan. There is a lot of work to be done in those goals. There aren’t even good “subtypes” identified (although some have been proposed). I don’t know how time consuming and expensive the genetic testing is, but anything involving 20,000 subjects is big. Pushing the genetic risk factors up to 50% is going to be challenging, considering that most genetic links found are under 2% of the total. The Plan states that about 10-20% of the genetic links are already known–that leaves 30-40% to be found. Likely that’s about 30-40 (or more) genetic risk factors.

I’d like to have more information on this statement:

Within the highest priority categories of exposures for ASD, validate and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011

Does this mean that some method of testing in petri-dish type experiments will be validated? So, we don’t have any more thimerosal dumped on cancerous cells and a link claimed to autism declared? I’m all for that. I wonder if it’s possible, just like I wonder if an animal model is possible.

That said, take a look. Discuss below and please, email them.

Write the IACC today!

19 Sep

The IACC (Interagency Autism Coordinating Committee) is seeking input. They have two RFI’s (requests for input) out right now, and one has a deadline of today!

The one with the deadline today is for the services subcommittee. The RFI is on the NIH website.

abfh has noted this deadline. ASAN (the Autistic Self Advocacy Network) has an alert on this, including talking points. This was also discussed recently on this blog.

Talking Points

The Autistic Self Advocacy Network has developed these talking points
to assist individuals in writing statements to IACC on the topic of
supports and services.

The RFI lists a number of areas of concern that can be addressed. You
do not have to address every topic. You can pick the ones that are
the most important to you. Feel free to change the wording so that it
reflects your most important priorities.

Education:

Studies need to be undertaken that assess current levels of supports
and services within the public education system. When treatments and
interventions that look promising are developed, additional funding
must be appropriated to address implementation so that teachers,
students, parents, and other education professionals are up-to-date
and have access to information, training, technological resources
such as AAC, and other resources.

Health and medical services (including dental):

Access to health and medical services, particularly for adults on the
autism spectrum, is of paramount importance for research funding.
Current studies that focus on diagnosis and treatment of children do
not address the very real need for healthcare access for autistic
adults who may not have insurance, may have communication
difficulties and other difficulties that prevent them from obtaining
adequate care. Education of health care professionals so that they
can interact knowledgeable with autistic patients/clients is one area
for research into services and supports.

Housing:

Research into housing alternatives, following ideas such as those in
the Community Choice Act and Money Follows the Person projects,
should be undertaken. Warehousing of individuals in residential
centers is undesirable yet often occurs because infrastructure for
other types of housing is unavailable or underutilized. Research
needs to include cost-effectiveness measures, some of which are
already available, which show that housing in the community costs
less than residential living.

Transitions:

Research into the most effective transition options needs to be
undertaken. Parents and young adults on the spectrum often have
nowhere to turn after they age out of the school environment. A
clearinghouse of options should be researched and developed so that
families will have resources already in place.

Employment:

Research into employment options and opportunities for people on the
autism spectrum needs to include components such as accommodations,
training, and career counseling. Research in other areas such as
treatment, interventions, diagnosis, and genetic research, can be
used to counter stereotypes of what an individual on the spectrum can
do for employment. Resources for trainers, counselors, employers, and
others need to be developed so that autistic people are not
discriminated against in the employment world because of stereotypes
and misunderstanding. The IACC and NIMH can set the tone for accurate
information that can help employers assess individual strengths and
weaknesses rather than relying on discriminatory assumptions.

Community inclusion:

Full inclusion in the community needs to be examined and research
initiatives should focus on this very important aspect of adult life,
and life for children who will grow into adulthood. Community-based
participatory research should be implemented that will accurately
reflect the actual needs of the autistic teen and adult population.

Safety:

Research into areas that can improve safety for autistic people,
throughout the lifespan, and in different situations, needs to be
undertaken. Areas to focus on are keeping people on the autism
spectrum safe if they have a tendency to wander, or do not understand
dangerous situations. Education of parents, professionals, first
responders, and autistic people should be undertaken, and the best
methods for ensuring safety should be addressed by research in this
area. Sometimes autistic people can appear unusual in behavior, which
will attract attention from law enforcement and other personnel.
Training for professionals in aspects of autistic behavior that might
not be understood is a crucial area to address in order to promote
the safety of all.

Older adults:

Many older adults remain undiagnosed. Some have no health insurance.
Some are living in poverty or are homeless. Many older autistic
adults will need medication, including medication for health
problems. Research into how to best reach out to older adults who may
not have an autism diagnosis but may present as in need of services
should be undertaken. Research into the effect of common medications,
including for non-autistic-related health problems such as diabetes,
should be undertaken. Because of the possibility of extrapyramidal or
paradoxical drug reactions, and the general effect of certain drugs
on older people, cases should be documented so that any adverse
pattern of reaction can be established. Housing, health care, dental
care, and community inclusion should all be addressed and tailored to
the older autistic population. Community-based participatory research
can be invaluable in determining the best ways to access health and
other care.

Finances:

Across the lifespan, autistic children and their families, autistic
adults and elders will have various financial needs. Research into
how to help families and individuals on the spectrum cover the costs
associated with treatments and interventions, and a clearinghouse for
resources should be developed. In addition, financial resources for
autistic adults who have difficulty with financial concepts should be
researched and implemented.

Guardianship:

Research into the best ways to establish guardianship should be
undertaken, including autistic adults as full participants in the
research process in order to establish the most ethical procedures
for guardianship. Guardianship should be tailored to the needs of the
individual rather than being a one-size-fits-all category, since some
individuals will need guardianship in limited areas, but not all
aspects of their lives.

Estate planning:

Families with autistic individuals need to take extra precautions in
planning an estate, especially for individuals who may need ongoing
care throughout life. Autistic adults also may need assistance with
estate planning. Research leading to the development of estate
planning tools that can assist families and autistic individuals in
making sound decisions should be initiated.

Take a look at the talking points above. Take a look at the RFI. Then, send an email to the services subcommittee.

ASAN on the IACC

15 Sep

Ari has put together a ‘call to arms’ everyone should read:

Below is a document of considerable importance. Right now, the Inter-Agency Autism Coordinating Committee is seeking public comment on issues relating to service-delivery. In our conversations with NIMH, we’ve heard a considerable willingness to move closer towards our position, if supported by a sufficiently strong public comment. The deadline on this is this coming Friday, the 19th. If people would be willing to post this on their blogs and also post their personal e-mails to NIMH on their blogs, we’d appreciate the help in turning people out to this. The initial version of this that has gone out on listservs and so on did not include the contact info to send the public comments to – an error on our part – but we’ve added it here. People should direct their comments, stories and so on to iaccservices@mail.nih.gov by September 19th, 2008. More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html. I’d also like to add that this is the first of two public comments in relation to the IACC that will be due this month – we’ll be sending out a primer on the second call for comments on the research Strategic Plan that will be due on the 30th. I have to stress here that volume is a major priority in what we want as far as responses go – we want lots of them and from lots of people. You don’t need extensive citations or anything of that nature – just send something expressing your support for quality of life, communication and similarly important research priorities. This is a top priority for us and we hope you can help us bring out our population – again, the quantity of our response will indicate to NIMH the extent to which the neurodiversity/autistic self-advocacy community should be viewed as a major stakeholder.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

ASAN BACKGROUND AND TALKING POINTS ON IACC REQUEST FOR INFORMATION ON SUPPORTS AND SERVICES

BACKGROUND:

The Interagency Autism Coordinating Committee (IACC) has put out a Request for Information (RFI) to seek input from stakeholders (those interested in autism), including autistic individuals, about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.

The RFI is due no later than Sept. 19, 2008, seven days from now. People should direct their comments to iaccservices@mail.nih.gov by September 19th, 2008. More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html.

This RFI provides an excellent opportunity for self-advocates and allies to make our voices heard. Members of the IACC are very interested in hearing from individuals on the autism spectrum. They’ve heard  extensively from the anti-vaccine crowd, from parents, experts, researchers, and from people on the autism spectrum.

More input from autistic adults at this point, when the IACC is coming close to finalizing a budget and mission statement for the Strategic Plan, will mean more attention to the issues we consider to be most important.

The focus of this particular RFI on services and supports is an area that many autistic adults have much to say about; here is a chance to say it directly to the committee that will be allocating resources to various areas. Currently, funding is skewed toward genetic research and research into treatments and interventions.

In the time that autistic individuals have been submitting comments and testifying at IACC meetings, some positive change has been noted in the amount of funds earmarked for research into services and supports.

It is important that the IACC hear from everyone who is able to comment because part of the task of assessing importance is to determine the extent of the population that has an interest in the decisions that the IACC will make.

The IACC decides levels of funding for research into supports and services, but does not fund supports and services themselves.

TALKING POINTS

The Autistic Self Advocacy Network has developed these talking points to assist individuals in writing statements to IACC on the topic of supports and services.

The RFI lists a number of areas of concern that can be addressed. You do not have to address every topic. You can pick the ones that are the most important to you. Feel free to change the wording so that it reflects your most important priorities.

Education:

Studies need to be undertaken that assess current levels of supports and services within the public education system. When treatments and interventions that look promising are developed, additional funding must be appropriated to address implementation so that teachers, students, parents, and other education professionals are up-to-date and have access to information, training, technological resources such as AAC, and other resources.

Health and medical services (including dental):

Access to health and medical services, particularly for adults on the autism spectrum, is of paramount importance for research funding. Current studies that focus on diagnosis and treatment of children do not address the very real need for healthcare access for autistic adults who may not have insurance, may have communication difficulties and other difficulties that prevent them from obtaining adequate care. Education of health care professionals so that they can interact knowledgeable with autistic patients/clients is one area for research into services and supports.

Housing:

Research into housing alternatives, following ideas such as those in the Community Choice Act and Money Follows the Person projects, should be undertaken. Warehousing of individuals in residential centers is undesirable yet often occurs because infrastructure for other types of housing is unavailable or underutilized. Research needs to include cost-effectiveness measures, some of which are already available, which show that housing in the community costs less than residential living.

Transitions:

Research into the most effective transition options needs to be undertaken. Parents and young adults on the spectrum often have nowhere to turn after they age out of the school environment. A clearinghouse of options should be researched and developed so that families will have resources already in place.

Employment:

Research into employment options and opportunities for people on the autism spectrum needs to include components such as accommodations, training, and career counseling. Research in other areas such as treatment, interventions, diagnosis, and genetic research, can be used to counter stereotypes of what an individual on the spectrum can do for employment. Resources for trainers, counselors, employers, and others need to be developed so that autistic people are not discriminated against in the employment world because of stereotypes and misunderstanding. The IACC and NIMH can set the tone for accurate information that can help employers assess individual strengths and weaknesses rather than relying on discriminatory assumptions.

Community inclusion:

Full inclusion in the community needs to be examined and research initiatives should focus on this very important aspect of adult life, and life for children who will grow into adulthood. Community-based participatory research should be implemented that will accurately reflect the actual needs of the autistic teen and adult population.

Safety:

Research into areas that can improve safety for autistic people, throughout the lifespan, and in different situations, needs to be undertaken. Areas to focus on are keeping people on the autism spectrum safe if they have a tendency to wander, or do not understand dangerous situations. Education of parents, professionals, first responders, and autistic people should be undertaken, and the best methods for ensuring safety should be addressed by research in this area. Sometimes autistic people can appear unusual in behavior, which will attract attention from law enforcement and other personnel. Training for professionals in aspects of autistic behavior that might not be understood is a crucial area to address in order to promote the safety of all.

Older adults:

Many older adults remain undiagnosed. Some have no health insurance. Some are living in poverty or are homeless. Many older autistic adults will need medication, including medication for health problems. Research into how to best reach out to older adults who may not have an autism diagnosis but may present as in need of services should be undertaken. Research into the effect of common medications, including for non-autistic-related health problems such as diabetes, should be undertaken. Because of the possibility of extrapyramidal or paradoxical drug reactions, and the general effect of certain drugs on older people, cases should be documented so that any adverse pattern of reaction can be established. Housing, health care, dental care, and community inclusion should all be addressed and tailored to the older autistic population. Community-based participatory research can be invaluable in determining the best ways to access health and other care.

Finances:

Across the lifespan, autistic children and their families, autistic adults and elders will have various financial needs. Research into how to help families and individuals on the spectrum cover the costs associated with treatments and interventions, and a clearinghouse for resources should be developed. In addition, financial resources for autistic adults who have difficulty with financial concepts should be researched and implemented.

Guardianship:

Research into the best ways to establish guardianship should be undertaken, including autistic adults as full participants in the research process in order to establish the most ethical procedures for guardianship. Guardianship should be tailored to the needs of the individual rather than being a one-size-fits-all category, since some individuals will need guardianship in limited areas, but not all aspects of their lives.

Estate planning:

Families with autistic individuals need to take extra precautions in planning an estate, especially for individuals who may need ongoing care throughout life. Autistic adults also may need assistance with estate planning. Research leading to the development of estate planning tools that can assist families and autistic individuals in making sound decisions should be initiated.

IACC Strategic Plan: How can I understand what is happening

10 Sep

We have discussed the IACC Strategic Plan before. They are looking for feedback. We’ve looked at the issues of vaccines, and the first section “When should I be concerned” already.

The second major section of the IACC draft Strategic Plan looks at the question of understanding what is autism.

Again, I am only pulling out the “Research Opportunities” and the “Goals” sections to keep this brief. Please, take a look at the entire document if you have the chance.

That said, I will take the first paragraph from the introduction to this section:

One of the greatest barriers to progress in determining the biological bases of ASD has been the heterogeneity of the spectrum. A clear need exists to advance understanding of the many phenotypes of ASD, including studies that link genotype to phenotype, investigations of natural and treated history, analyses of genetic interaction with environmental exposures, and studies of co-occurring medical conditions.

It’s a big (BIG) undertaking. Here is an outline of how they are going about this. Take a look and, please, send them comments. The IACC website has details, but, basically, it boils down to email them (use the link, the subject line is already filled in!).

Research Opportunities

• Multi-disciplinary, longitudinal, biobehavioral studies of children, youths, and adults beginning during infancy that characterize developmental trajectories and identify ASD risk factors, subgroups, and potential biological targets for intervention. Such studies could include:
o High-risk siblings of children, youths, and adults with ASD, children without a family history of ASD, and typically developing children
o Multi-disciplinary assessments of brain imaging, metabolic and immune markers, microbiomics, electrophysiology, and behavior

• Research on females with ASD to better characterize clinical, biological and protective features.

• Human and animal studies that examine immune, infectious and environmental factors in the occurrence of ASD.

• An international public-private collaboration to expand current postmortem brain and other tissue resources (e.g., skin fibroblasts) to increase the acquisition, quality, type and availability of biomaterials relevant to studying the pathology of ASD.

Short-Term Objectives

• Establish an international network of brain and other tissue (e.g., skin fibroblasts) acquisition sites with standardized protocols for phenotyping, collection and distribution of tissue by 2010.

• Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010.

• Launch three studies that specifically focus on the neurodevelopment of females with ASD by 2011.

Long-Term Objectives

• Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children, youths, and adults with ASD change over time as compared to typically developing individuals by 2020.
_______________________________________

In many ways, I could see this section getting the least attention from people responding. At the same time, it is the cornerstone for future research. Really, if we understand what is autism (in its many forms) won’t we have a better idea of how to treat it and how it originates?

Take a look and, if you have any thoughts, say “this looks good” or “you should include XXX in this section, email them.

Dan Olmsted suffers by comparison

9 Sep

Ever since his unexplained sudden departure from UPI, Dan Olmsted has been working on his Magnificent Octopus entitled ‘Mercury Rising’.

He keeps his keen investigative journalism skills to the fore by writing the occasional blog piece for Age of Autism. These skills have included the scintillating exposé

“Where are the autistic Amish?” he asked. “I have come here to find them, but so far my mission has failed, and the very few I have identified raise some very interesting questions about some widely held views on autism.”

Except that Dan Olmsted never visited Clinic for Special Children in Strasburg, where

Dr. Kevin Strauss, MD, a pediatrician at the CSC. “We run a weekly vaccination clinic and it’s very busy.” He says Amish vaccinations rates are lower than the general population’s, but younger Amish are more likely to be vaccinated than older generations.

Strauss also sees plenty of Amish children showing symptoms of autism. “Autism isn’t a diagnosis – it’s a description of behavior. We see autistic behaviors along with seizure disorders or mental retardation or a genetic disorder, where the autism is part of a more complicated clinical spectrum.” Fragile X syndrome and Retts is also common among the clinic’s patients.

This is backed up by the fact that in April of last year, a study was published that showed that the Amish vaccinate.

Responses were received by 225 (60%) of the 374 Amish households in the community with children aged <15 years. An additional 120 responses were received by households without children. A total of 189 (84%) households with children reported that all of their children had received vaccinations; 28 (12%) reported that some of their children had received vaccinations; and 8 (4%) reported that none of their children had received vaccinations.

Among all respondents who knew their own vaccination status, 281/313 (90%) reported that they had received vaccinations as children.

As we can see, Dan’s investigative journalism is of the highest order.

Today, he has decided to maintain his high standards by doing what he does best – speculating wildly. This time its an absolute doozy.

Determined to hang on to the thiomersal idea at all costs (despite the fact that thiomersal has been out of all paediatric vaccines since 2002 and autism rates are still climbing in the US, just like the UK and just like Japan), Dan takes every bit of evidence that someone once walked past the house of a man who’s first cousin worked at a paint factory as highly suggestive of metal poisoning. In order to justify his new tome (entitled ‘mercury rising’ – don’t bother looking for it anywhere) he _has_ to keep interest in mercury up. Despite the fact that its quite clear to anyone with an ounce of common sense that the thiomersal hypothesis’ time has come and gone, without it, he has no book, hence no book deal, hence no prestige.

So, back to Dan’s latest genius reportage. Dan has just finished reading Autism’s False Prophets and is quite clearly not pleased with the coverage given to Kathleen.

Kathleen, you see, is everything that Dan Olmsted is not. He is slapdash, she is thorough. She checks sources, he thinks they’re what you pour on your dinner. She uncovers _actual_ wrongdoing, he thinks wrongdoing is solely confined to anyone with the title ‘Dr’.

Offit describes Seidel moving to New York City “where she met her future husband, a guitar player. She worked for Project Orbis, a flying ophthalmalogic surgical teaching hospital. …”
Whoa. A flying ophthalmalogic surgical teaching hospital? I suppose it’s possible she just booked their flights and never set foot on the plane, but assuming she was part of the team, I strongly suspect Kathleen Seidel was exposed to thimerosal occupationally.

Ever the principled and thorough reporter, Dan utterly fails to do what any n00b reporter would know to do – check your facts. There was one easy way Dan could’ve saved himself a fair amount of embarrassment over this blog post: he could’ve (get ready for the novel idea Dan!) _asked Kathleen_ . And when he did, she would’ve told him that booking flights did indeed fall under her remit *as a Secretary*. So did dictation, typing and general filing. Knowing Kathleen’s pretty awesome taste in music, I suspect the closest she got to any kind of metal was attending a LedZep gig or two.

Olmsted goes on to say:

Laugh me off if you want, but I have spent a lot of time looking for plausible links between parents’ occupations and autism in their children, and I know them when I see them.

Please, join with me:

BWHAHAHAHAHAHAHAHAHAHAHA!

Strategic Plan: vaccines

8 Sep

I’ve already started a series on the IACC (InterAgency Coordinating Committe) draft Strategic Plan.  We have until the end of September to submit input to the IACC (but why wait?)

One hot topic is how to handle the issue of vaccines or immunizations. OK, this is a hot topic in the greater autism community in general, but many have made how the IACC handles the issue of vaccines into a big issue.

Given that, it is worth looking into how the Draft Strategic Plan address vaccines. Two sections mention vaccines. The first, under “What caused this to happen” the Draft Plan states:

Research on environmental risk factors is less well developed. An Institute of Medicine workshop held in 2007 summarized what is known and what is needed in this field (Institute of Medicine of the National Academies, 2007). Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). Some samples have been collected throughout pregnancy and early postnatal life may be essential for detecting the interplay of environmental exposures and genetic factors that lead to ASD. As a complement to these large-scale studies, research on critical high-risk sub-populations (e.g., subsequent pregnancies in families with ASD, those with elevated exposure to specific environmental factors, older parents) could provide leverage in identifying genetic and environmental risk factors. Some parents, however, remain concerned that ASD is linked or caused by vaccination. In addition, a number of other environmental agents are being explored through research that are known or suspected to influence early development of the brain and nervous system. Recent studies suggest factors such as paternal age, exposure to infections, hormones, and other biological agents may confer environmental risk. These findings require further investigation and testing, some of which is ongoing through the CADDRE Program, the Norwegian cohort study, the CHARGE study, and the Children’s Centers for Environmental Health and Disease Prevention supported by NIEHS and the Environmental Protection Agency (EPA).

Also, one Research Opportunity under “What caused this to happen” states:

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.

Reading that, one could argue that this is not a lot of discussion of vaccines. The idea that vaccines are put on a “Monitor the literature” seems appropriate. But, as we’ve seen, some groups are looking at this document and (a) claiming this is not enough and (b) working to get more statements inserted and (c) in my opinion, trying to make the Strategic Plan a political statement than a research plan.

Consider the idea of monitoring the literature for possible associations with autism. Isn’t that basically a given? Seriously, the Strategic Plan isn’t an IEP document. If something comes up–in any area–on autism causation, the NIH will respond. Why do we have to call out vaccines in particular?

You might ask, “then why care what the Plan includes under ‘monitor’?”

Take a look at how the Combating Autism Act is discussed now. Many would like to ignore the fact that major lobbying efforts were made to include statements about vaccines–and yet the Congress chose to leave mention out. The Act specifically does not include the word “Vaccine” or “immunization”. But, when it comes to vaccines, we are talking about the same people who are trying to rewrite the Hornig et al. study as a validation of Wakefield’s research. When it comes to the Combating Autism Act, these people point to the concept that “vaccines were discussed as part of the process” and point to drafts that they themselves wrote as if this has some official status.

Or, to put it more simply: People want to have vaccines be more prominent in the Plan. However, given that (a) they are already covered under the umbrella of the “environment” and (b) the past history of politicizing any government mention of vaccines and autism, should they be mentioned at all in the Plan?

Think about it. If you feel strongly about the idea of vaccines being included in the Strategic Plan, one way or the other, send them email .

Strategic Plan: when should I be concerned?

5 Sep

No, I’m not asking “when should I be concerned about the Strategic Plan”. Instead, I am taking parts of the Plan and posting them here. The full Plan is 34 pages long. Don’t let that slow you down! It really isn’t that long, and I found it a good read. But, it is hard to discuss the whole thing as a blog post.

Another point I see–there are six sections.  It may be tough to sit down at one time and write a response to all six.  If you think that may keep you from commenting, follow these posts and comment as you go.  It sounds like they would prefer you to write one single email, but I am all for anything that gives them more feedback–especially feedback that encourages using a strong scientific approach to selecting research projects.

With apologies to the people who wrote the Strategic Plan, I am going to only post the sections on “Research Opportunities” and “Short Term Objectives” and “Long Term Objectives”.  Read them and ask, “Is this how I want research dollars and research time spent?”.  If so, send them email and show support for the parts you like.  If not, email them and let them know your concerns.

With that intro, for the section, “When Should I be Concerned”, we have:

Research Opportunities

• ASD screening instruments and approaches for use in community settings to identify individuals who require diagnostic evaluation.

• Sensitive and efficient clinical diagnostic tools for diagnosing ASD in widely diverse populations, including underrepresented racial and ethnic groups, females, younger and older age groups.

• ASD measures that are easy to administer and that are sensitive to incremental changes in both core and associated ASD symptoms. Such measures can be used to help track the clinical course of individuals with ASD, monitor responses to interventions, and provide information about the broader autism phenotype.

• Detailed criteria for specific ASD sub-types in order to better describe the variations in symptoms and severity and study how these variations relate to underlying pathology, intervention strategies, and outcomes.

• ASD subpopulations and associated biobehavioral markers that provide early indication of ASD risk and opportunities for early intervention.

• Protocols for genetic testing in routine clinical practice in order to identify individuals at risk for ASD. Identification of individuals with genetic variations associated with ASD will facilitate intensive studies of ASD subpopulations with shared genetic risk factors to characterize common phenotypic and biological features.


Short-Term Objectives

• Develop, with existing tools, at least one efficient diagnostic instrument (e.g., briefer, less time intensive) that is valid in diverse populations for use in large-scale studies by 2011.

• Validate and improve the sensitivity and specificity of existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012.
o School aged children
o General population (vs. clinical population)

Long-Term Objectives

• Validate a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014.

• Develop five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015.

• Identify and develop measures to assess at least three continuous dimensions of ASD symptoms and severity that can be used to assess response to intervention for individuals with ASD across the lifespan by 2016.

• Effectively disseminate at least one valid and efficient diagnostic instrument (e.g., briefer, less time intensive) in general clinical practice by 2016

Again, ask yourself, “Is this how I want research dollars and research time spent?”. If so, send them email and show support for the parts you like. If not, email them and let them know your concerns.

No, really, email the IACC

4 Sep

Kev has already noted that the IACC has opened the Strategic Plan for comments and suggestion–a “Request for Information” or RFI.

This is something to not put off–a deadline to beat, not miss.

The Draft Strategic Plan is public. It’s long (34 pages), so you might think “I’ll get around to looking it over” and, well, it’s long enough that you may never read it through entirely and miss the deadline.

Here’s another tactic: Think about what is important to you. See if it’s in the strategic plan. If you liek what you see, say so. If you don’t like what you see (or you don’t see anything), say so.

Or, if that hurdle is too high (no judgements here. If this wasn’t keenly important to me, I might wait too long and miss this), just send the email with what you think the Strategic Plan should include. (add NOT-MH-08-021 to the subject line)

If you just want to say (for example), “Yo, NIH! You guys should stick to the peer reviewed methods that work” or, “Please stress adult issues“, or “I know you are getting pressure about vaccines, please don’t cave“, that works too. (As Ms. Clark has reminded me: add “NOT-MH-08-021” to the subject line).

If you are looking for more inspiration (and something more formal), here is a draft that someone I know wrote as an intro. Consider it a template to work in forming your own message.

Please stay with the scientific method in evaluating specific parts of the Strategic Plan and its implementation. This is one of the strengths of the NIH and NIMH and should be followed in autism research.

This is especially true when it comes to the subject of vaccines. The Institute of Medicine in their report on vaccines and autism rejected the theories that vaccines cause autism and further stated, “the committee recommends that available funding for autism research be channeled to the most promising areas.” Truly, we need to insure that limited money, time and researcher resources be applied to the most promising areas. The vaccine/autism theory does not meet that standard.

The Strategic Plan allows for updates to respond to new research. The current plan to monitor the literature in case new, relevant research comes forward indicating that the autism/vaccine question should be pursued. This is the appropriate approach.

I fully realize how easy it is to put this off. I’ve been meaning to write this blog post for a week now. It took this post with the ASAN announcement about the RFI to get me to move.

Send your thoughts in an email to iacc@mail.nih.gov. The deadline is Sept. 30th. But, why wait?

[edit: added comments about NOT-MH-08-021 in the subject line.]

John McCain starting to back away from vaccines?

28 Aug

I’m a bit hesitant to blog about political figures from other countries. I don’t know an awful lot about John McCain other than he was a Vietnam (I think) veteran and was a POW for awhile. I know the Bush team sledged him pretty badly in the run up to Bush’s current term and I know he tries hard to cultivate a old-fashioned-take-no-shit-youngster attitude. I neither like him nor dislike him.

However, back in February he did irritate me quite a lot when he said:

[Autism]….is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines.

It irritated me because firstly, there’s no evidence its ‘on the rise’ in the sense I think he meant it. There’s no way of scientifically telling from current studies if it is or not. In fact, the best science done so far on the issue (Shattuck, 2006) states:

The mean administrative prevalence of autism in US special education among children ages 6 to 11 in 1994 was only 0.6 per 1000, less than one-fifth of the lowest CDC estimate from Atlanta (based on surveillance data from 1996). Therefore, special education counts of children with autism in the early 1990s were dramatic underestimates of population prevalence and really had nowhere to go but up. This finding highlights the inappropriateness of using special education trends to make declarations about an epidemic of autism, as has been common in recent media and advocacy reports.

In other words, because autism has not been tracked well up until now, there is no way we can say with any degree of confidence that is increasing. It may be, but most scientists think that instead of an _increase in autism_ , we are seeing an increase in _accurate diagnosis_ of autism.

Secondly, McCain’s statement irritated me because, of course, there is _no_ evidence, strong or otherwise, that indicates autism is caused by preservatives in vaccines. And certainly McCain totally failed to provide any kind of evidence for this silly statement.

However, as election time draws nearer, it seems McCain’s statements are growing a bit more (he said with no trace of irony) conservative. Maybe someone explained the facts of life to him: after having someone of less than stellar brain power in office for the last eight years, it might be a good idea to evaluate things properly, rather than just sound off and come across as Dubya Part II.

Here’s what he said recently:

We don’t know what causes [autism]. There’s a huge debate going on now about vaccinations. And I’ve read and studied and gotten briefings, and I don’t know all the answers.

Thats quite a lot more circumspect than ‘there’s strong evidence that indicates that it’s got to do with a preservative in vaccines’. A simple statement of facts. After all, its true – we _don’t_ know what causes autism. And there _is_ a debate going on about vaccinations. And guess what? John McCain _doesn’t_ know all the answers.

I’m guessing McCain’s team have suggested to him that if he doesn’t want to be known as the also-ran who hyped up unfounded fears of vaccinations in the middle of a measles epidemic sweeping through the country he’s attempting to lead then it would be a good idea to engage his brain before opening his mouth.

Sharyl Attkisson's 3rd autism/vaccine concession

26 Aug

A few days ago, I posted an entry about Sharyl Attkisson’s breathless parroting of ‘facts’ regarding a case from 1991 based on a child born in 1974. This case was settled in favour of the child. It transpired (of course) that the Special Master had in fact said nothing about autism whatsoever.

However, an interesting comment was left by ‘M’ who said:

Dravet syndrome? It is a genetic disorder, de novo mutations of the sodium-channel gene SCN1A. Children with these mutations are seemingly normal until they have the first high fever episode (it could be post-vaccination fever as well) – then the syndrome manifests with epileptic syndrome and subsequent developmental delay (encephalopathy). The genetic diagnosis was not possible until recently – the mutation was first identified in 2001.

An intriguing possibility that I read and then with my usual stunning foresight, totally forgot about.

However, I got an email yesterday that raised the issue once more. I cannot share with you who its from, a fact that is rather annoying (but understandable, this person doesn’t want to expose themselves to the loving care of the mercury militia) but I assure you, you would recognise this name.

The writer assumes that this is a vaccine injury because the special master determined that this was a compensable case. However, this event occurred in 1974 and the hearing in 1990-91. Now, in 2008, it is obvious that the epilepsy and resultant developmental impairment and “autism” are not caused by DTP but, rather, are due to Dravet syndrome (or severe myoclonic epilepsy of infancy), which is a genetic epilepsy with a mutation or change in the SCN1A gene. The evolution is typical of this disorder. It is a very temperature sensitive epilepsy (a 1 degree Celcius elevation is sufficient to trigger a seizure) and is not caused or aggravated by any immunization. Berkovic et al described this entity as a cause of vaccine encephalopathy in their Lancet Neurology 2006 paper.

I am concerned about the superficial investigatory actions of this writer (actually no real investigation was done – she assumes everything to be true). I thought I would share this information with you and let you use the information as you wish.

I can’t find a copy of the entire transcript, but from the parts Attkisson transcribed and quoted and comparing the evolution to the Dravert Syndrome home page, it certainly does look like a good match.

So what does that imply? Well, if its _not_ Dravert Syndrome then, nothings changed – still not autism though. If it _is_ Dravert Syndrome then it goes to show how little we know about genetic disorders and how careful we should be about rushing to judgements.

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