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Who makes up the autism community?

16 Nov

On a recent post, Sullivan asks why vaccines should be included in any strategic plan when ‘vaccines-cause-autism advocacy organizations can’t ask for it?’

Its a good point. What _I_ want to pick up on is the claim that some of the groups who co-signed the letter Sullivan refers to are in any way (as they claim to be) ‘the autism community’. Lets take a look at some of the biggest news events of the last five years related to autism.

The top stories from 2003 came in July of that year. Of the top 100, less than 10 mentioned vaccines. Of the other 90% of stories Generation Rescue mention none, SafeMinds mention none, ARI mention none, NAA mention none, OAR mention none, TACA mention none, Unlocking Autism mention none.

The biggest month for 2004 autism news was May. Non-vaccine stories (on page 1) accounted for 87%. Again, none of the above organisations discussed any of these stories.

The biggest month for autism news in 2005 was August. Of page 1 results, 19% mentioned vaccines (4 were from AoA and about 6 were about the death of Abubakar Nadama). Of the other 81%, none were mentioned by the above groups.

2006 and October is the busiest news month. 3% mention vaccines. Of the 97% of stories that don’t, the organisations above mention none.

2007 sees the busiest news month as April. Of the 93% that do not talk about vaccines, none of the above groups comment on their websites.

2008 – so far April is the busiest news month with 9 mentions of vaccines in the top 100 stories. Of the 91% not talking about vaccines, yep, you guessed it, none of the above organisations talk about the stories.

The single top story regarding autism this year was World Autism day. No mention of this on the websites of Generation Rescue, SafeMinds, NAA, ARI, OAR, TACA or Unlocking Autism.

And these are the people who claim to be the autism community?

The truth is that these people are a series of single issue groups concentrating on vaccines and autism. The truth is that fully 7 out of the 11 (63%) groups who co-signed this letter have no interest in autism beyond vaccines/toxins.

These groups do not, in any way shape or form represent the autism community. I hope the IACC see this clearly.

A (head) space of my own

14 Nov

Four days ago the New York Times published a fascinating piece on the hypotheses of two scientists who are positing that mental disorders of an unknown variety and number are all actually one disorder. Specifically mentioned are autism (of course), schizophrenia, manic depression (aka Bipolar), depression:

In short: autism and schizophrenia represent opposite ends of a spectrum that includes most, if not all, psychiatric and developmental brain disorders. The theory has no use for psychiatry’s many separate categories for disorders, and it would give genetic findings an entirely new dimension.

Two fascinating aspects of this appeal to me. Firstly is the idea of this proposition as ‘hypothesis generation’:

The reality, and I think both of the authors would agree, is that many of the details of their theory are going to be wrong; and it is, at this point, just a theory,” said Dr. Matthew Belmonte, a neuroscientist at Cornell University. “But the idea is plausible. And it gives researchers a great opportunity for hypothesis generation, which I think can shake up the field in good ways.”

Can you sense where I’m going to go with this yet? Shaking up the field in _good_ ways…..as oppose to _bad_ ways….I’m getting predictable right?

Well, you’d be right. This is definitely a good sort of hypothesis generation – it leans on sound scientific theory and provides a possible next step for a wide variety of mental differences (my word, ‘disorder’ is not right for me) which other scientists can break down into testable ideas. Some will be right. Lots will be wrong. And science will carry on getting closer and closer to an accurate reflection of reality.

And the bad sort of hypothesis generation? It relies on science that is either unsound, improbable or fabricated from whole cloth. It represents a bad financial investment as the return from this sort of hypothesis in terms of solutions is pretty much zilch. And as the recent letter to the IACC sent by groups pursuing such hypothesis shows what it does produce is an overblown sense of entitlement and the lack of recognition that science cannot be served up like a drive thru burger meal.

Anyway, moving on from that, the second thing that appeals to me about this proposition is the fact that it links my autistic child and I in non just the bonds of blood and familial genetics but the genetics of difference too. She is autistic I am manic depressive – we have a head space all of our own.

Back in July, I wrote an entry that referred to an ever-shifting Aurora of autism’. I would love to have underestimated and would like to be able to refer to ‘an ever-shifting Aurora of neurodiversity’ where I share genetics differences with my autistic child but in slightly different shifting shades. All my online and offline friends with OCD, depression, dyslexia, schizophrenia and a wild mix of others are really my genetic family.

Why should the strategic plan include vaccines…

14 Nov

…if all the vaccines-cause-autism advocacy organizations can’t ask for it?

I’ve been watching the process for the IACC fairly closely. You may have noticed my obsession. One issue that has come up is…you guessed it, vaccines. IACC meetings have been available to listen to by phone. (thank you NIH!) I’ve listened to long…long…long…speeches about the importance of research on vaccines and mercury. It’s had very broad support from…well…Lyn Redwood and Mark Blaxill. Pretty much silence from the rest of the IACC.

That said, I can’t say I am not surprised that an 11th hour attempt to change the process. Yes, according to a letter sent to members of the IACC, “we as a community community” are “united” expressing disapproval for for the Strategic Plan in the current form. This isn’t new. In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.

But, it’s worth taking a look at the letter. Alternatively, you could trust me to tell you what I found. Better yet, let me tell you what I didn’t find: vaccines. No mention of the word vaccines…or mercury…or thimerosal…or immunization…or epidemic. I seriously had to check that the search function was working as I read that document.

Why point this out? To jab a little fun at our good friends? No, there is a much more important message here:

Take a look at the organizations that signed this letter:

Autism New Jersey
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

If they can’t agree on including “vaccine”, “mercury”, “epidemic” or any variation of those words—

WHY SHOULD THE IACC INCLUDE THOSE WORDS IN THE STRATEGIC PLAN????

Seriously, there has been a big push to get the IACC to make a strong statement on the vaccine issue. And yet, these words are missing from their own letter.

So, I’ll say it again: if Generation Rescue, SafeMinds and the rest can’t agree to put “vaccines” or “epidemic” in a letter, why should the IACC bow to their wishes and include these terms in the Strategic Plan?

Collecting IACC comments

2 Oct

Thanks to all who wrote to the IACC (or even thought about it!) about the Strategic Plan.

I’m trying to compile a list of responses. If you are OK with your comments being included, send them to sullivansjourney@gmail.com.. If you would like to remain anonymous, send your comments using a form that’s been set up here.

These responses will be shown to researchers to let them know that the greater autism community isn’t just about vaccines. It will show them that, yes, the greater autism community appreciates their support.

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.

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.

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