Age of Autism still don't get it

15 Jul

Over on our favourite pompous blog, the authors and readers still seem to have trouble processing their collective importance to autism related science (none at all) as well as how successful politicians are at directing science (not at all).

They flourish a letter from the Chairman of the Subcommittee on Investigations and Oversight of the House Science and Technology Committee (long enough name fellers?) which is itself breathtaking in its dumbness.

In the Combating Autism Act, Congress directed DHHS to conduct research into screening, diagnosis, treatment and medical care for individuals with autism. These areas of research are essential to a balanced approach. In addition to these areas, I strongly encourage the IACC to promote a balanced research portfolio when examining the underlying causes of Autism Spectrum Disorder (ASD). An examination of the FY07 ASD Research Portfolio shows a strong preference to fund genetic-based studies related to autism. There is growing evidence that suggests a wide range of conditions or environmental exposures may play a role in the emergence of ASD.

So, they firstly admit the role of CAA did not ask DHHS to examine the causes of autism but then ask the IACC (a committee appointed as a result of the CAA) to do it anyway. They then tick the IACC off for having a preference for genetic based studies and say there’s growing evidence that a ‘wide range’ of things cause autism. Possibly thats true, but the reference they provide to support that statement belies their beliefs. They reference the recent IMFAR poster presentation of Laura Hewitson. A study that has not even been published. This _is_ a science committee right?

They then go on to repeat a number of anti-vaccinationist talking points (Hannah Poling, biomedical treatment etc etc) and then make their recommendation:

I urge you to consider forming a Secretarial-level Autism Advisory Board (AAB). While the IACC is the primary mechanism for the coordination of research, surveillance, and early detection activities within the Department of Health and Human Services, an AAB could provide additional public feedback and serve as a liaison between parents, individuals with ASD, advocacy groups and the Department of Health and Human Services, and would assist in reestablishing public confidence

and whom might be on such a board I wonder?

Groups such as SafeMinds, Generation Rescue, Autism Speaks, the Simons Institute, the National Autism Alliance, and the Autism Research Institute all have or are currently supporting research. Such groups have experience evaluating research, an in-depth knowledge of the current body of ASD research, and an appreciation of the new questions that may need to be examined in order to move our understanding of ASD forward.

This is a bad joke, surely. What is driving this is the fact that some IACC members are annoyed that the IACC didn’t immediately capitulate to their demands to study vaccines and vaccines only. There was a good reason why they didn’t. Its already been done. No association. Move on.

I have to say the idea of SafeMinds and Generation Rescue being on a board that is to restore public confidence to “parents [and] individuals with ASD” amuses and scares me in equal part. Maybe Mr Miller hasn’t seen founding members of Generation Rescue calling autistic people ‘trailor dwelling coo-coos’ or founder members of SafeMinds referring to blogs authored by autistic people and parents of autistic people as part of a ‘Wackosphere’? I think once he has (and he will, as will Secretary Leavitt and Dr Insel) he might stop and think futher.

Anyway, I digress, back to AoA. They employ a clever bit of deviousness to try and lever vaccines into the CAA:

The CAA listed 13 scientific fields but the only specific research topic mentioned in the legislative history was vaccines and their preservations as a possible cause of autism.

Hey, why would they need to? The Omnibus Autism hearings are doing that right?

But read carefully. It looks on a quick pass like vaccines are mentioned in the CAA. But they aren’t. They are mentioned in the ‘legislative history’. What that means is that there is no mention of vaccines in the CAA (and there isn’t. Read for yourself.)

Another word that would equate with ‘legislative history’ is ‘rubbish’ meaning ‘that which has been thrown away’. AoA – or in this instance Kelli Anne Davis (apparently the DC Political Liaison for Generation Rescue) – will be using the phrase ‘legislative history’ to try and afford some weight to the idea of vaccines being in drafts of the CAA. I really doubt anyone is going to fall for that little sleight of hand Kelli Ann.

And here’s the kicker:

This letter is the result of a year-long, collaborative effort between Generation Rescue, SafeMinds and the Investigation and Oversight Subcommittee.

I’ll bet it is.

Just this week, yet more genetic evidence was uncovered into the aetiology of autism. Y’know, the kind of evidence AoA et al are saying is useless and there’s too much of.

Let this be a marking point. Let us all remember that this is the week that the political process was co-opted in order to achieve a useless goal. The results of that, if successful, will be even less research into what could be vital therapies, educational strategies, residential innovations and means of garnering respect for autistic people.

6 Responses to “Age of Autism still don't get it”

  1. Patrick July 15, 2008 at 16:15 #

    This appears to be quite dangerous to me.

    They have spent a year (lobbying) to get someone to declare several organizations declared as official mouthpeices or talking heads. So they may spread the word of their biased interpretations with the appearance of authority/respectability. Though in many cases their peer review processes have been called into question. Organizations that use belittling terminology of the target group, and that practice or recommend off label and unsafe or not proven effective therapies (i.e. EDTA, DMSA, Exorcism, Megadosing.)

  2. Tom July 15, 2008 at 17:35 #

    It’s funny how little that letter reflects reality. Goes to show what money can buy.

    There’s has been and still is a fortune being spent on vaccination research. The large epi studies are collecting all sorts of data on environmental risk factors. Genetic studies have already identified autism gene variants that are environmentally susceptible to changes in expression.

    Blaxill and his merry band really have no scientific understanding. Despite their efforts to politicize science, the peer-review process cannot be hijacked. Ask Richard Deth how many times his stellar autism research has been funded by NIH. Ask the Geiers how their RO1 submission is going.

    GR and SM may get to pretend they are going to control research. But they will quickly find that they have no teeth. No one is going to let them into study section.

  3. Sullivan July 15, 2008 at 20:26 #

    That is a pretty amazing letter they got sent to Mike Leavitt.

    Let’s see, who has been working hardest to diminish confidence in the HHS are pressing to be included in a committee to help repair the confidence?

    These groups are outright belligerent to mainstream researchers. What makes them think they could be a bridge between parents (which include people like me), researchers and the government?

  4. Regan July 15, 2008 at 21:01 #

    Can someone suggest what would be an appropriate reply and who to send it to?

    Like it or lump it, if those who do not see these groups as their representatives do not say anything to them that matters, then it tacitly infers agreement.

  5. wackyvorlon July 22, 2008 at 10:56 #

    Hi Wackyvorlon – sorry for having to edit your comment. I am not allowed to approve comments about that individual under penalty of law 🙂

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