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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4 Responses to “Strategic Plan: when should I be concerned?”

  1. Sullivan September 5, 2008 at 23:45 #

    I like these goals a lot. This section, by nature, focuses a lot on younger people with autism. And, yet, they include a fair amount of “through the lifespan” language.

    There is a lot of emphasis here on streamlining the screening and diagnostic process. If you’ve been through an ADOS or the like with your family, you realize that these are long (and expensive) tasks. Getting a good way to (a) screen and (b) diagnose faster and accurately would be great for families and researchers alike.

    One thing I am not as happy with is the emphasis on “at risk”. Yes, it’s important, but I think that this implies that many or all people with autism aren’t autistic from birth. That is a whole discussion unto itself, but suffice it to say, I think there are a number of people born with autism. We should identify them as “likely to be autistic” or something similar, but I don’t think they are “at risk”. I don’t think that “at risk” need necessarily be removed, but an acknowledgment that “at risk” means more than “not yet autistic but might become autistic” would be helpful.

    Did I mention that you can email them ?

  2. Ms. Clark September 6, 2008 at 04:48 #

    I hope many readers will take the time to email them . They can do that by clicking on the words “email them” if they have an email client thingy… it should open up a blank email form for them to fill out.

    It’s good to remind the IACC that they have been overly influenced by a noisy and badly informed minority (the mercury parents) and it’s good to tell them that it’s time to put the mercury antivax parents on mute. There’s also been a push by these parents to throw caution to the wind and just DO SOMETHING TO FIX THESE KIDS!!!!!! They don’t want too much interference from IRBs or in looking for legitimate scientific reasons to do something in particular…

  3. Regan September 6, 2008 at 05:15 #

    Sullivan,
    Thanks for these reminders to respond to the RFIs, and for helping to analyze the content of the draft strategic plan.

Trackbacks/Pingbacks

  1. Wohin mit Autismus-Forschungs-Geldern? - January 2, 2011

    […] Strategic Plan: when should I be concerned? […]

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