Autism Hearing? Let yourself be heard

21 Nov

It has been reported that a hearing of the Committee On Oversight & Government Reform will held on autism on November 29th:

The panel, chaired by Rep. Darrell Issa (D-Calif.), has invited witnesses from the National Institutes of Health and the Centers for Disease Control and Prevention, as well as Autism Speaks and other advocacy groups.

Autism Speaks appears to be confirming this meeting is being set up.

There hasn’t been such a hearing in many years (think a decade). The previous hearings were held by Congressman Dan Burton, who was a major proponent of the idea that vaccines were causing an epidemic of autism. Congressman Burton is retiring, and the focus of the meeting is likely not going to be as strongly vaccine oriented in the past, but that will likely be a discussion point. From what I’ve been able to gather, so far the meeting will include no Autistic representatives nor Autistic-run organizations.

Should the meeting happen (it isn’t on the calendar for the Committee yet), wouldn’t you like the opportunity to have your views heard? One can fax the Committee, but they are not under an obligation to include public comments. I say this not to dissuade you from sending a comment, but, instead, to encourage you to ask strongly that your comments be included.

I have set up a website which will allow you to easily send a fax to the committee. Follow this link and you will have a form which you can fill out and send your message. The form is very basic (here is a screenshot). The message you send will be emailed to you and emailed to a fax server which will send it to the committee’s fax number. (alternatively, you can fax them directly at (202) 225-3974).

In my opinion, U.S. Autism policy affects communities the whole world over. As such, I would encourage international readers of Left Brain/Right Brain to submit comments as well. Consider making it clear that you are from outside the U.S..

Privacy issues: the site sends two emails. One to the email address you give and the other to a server which will send the faxes. I have access to the logs on that server and, for some time, I can read the faxes sent. But I don’t.

You are free to chose your talking points. Here are some of mine:

1) We need focus on improving the quality of life of Autistics
2) While not all Autistics can self-advocate, if we are going to have autism organizations represented, we need to have Autistic-run organizations represented.
3) Autism is a very broad spectrum, all with challenges of some sort. The government’s response needs to be broad (read-larger than it is now) in order to encompass all the needs of these communities.
4) The vaccine-epidemic hypothesis has been very damaging to the autism communities. Please don’t allow this meeting to be a way around the science in order to keep that idea alive.
5) There are faux therapies in common use for autism. Many are harmless. Some are dangerous and based on incredibly poor science. We need to get accurate information out about these practices.

The fax is very basic. Here is a copy of one I sent earlier this week. I redacted my phone number and email address, but those will be included in the fax you send (note that those are voluntary fields. In other words, you can leave the phone number and city/state boxes blank).

Again, take a moment or take longer and put together a comment for the Committee. Follow this link and fill out the form and send a fax.

9 Responses to “Autism Hearing? Let yourself be heard”

  1. Andrew November 21, 2012 at 19:11 #

    Why is Autism speaks being invited to an Autism hearing? That’s like the NRA being invited to a panel on gun control, or the KKK being invited to a Civil Rights meeting, or a tobacco industry bigwig being invited to give evidence as to the dangers of cigarettes

  2. mikemawords November 21, 2012 at 23:43 #

    Daschel appears to be very unhappy that her unproven vaccine-autism theory is being dissed here. Well done Sullivan!

  3. lilady November 23, 2012 at 20:56 #

    Orac at Respectful Insolence just blogged about this hearing….

    BTW, Happy Thanksgiving from Safe Minds and AoA;

  4. Sullivan (Matt Carey) November 22, 2012 at 01:52 #

    It’s nice to know that’s Ms. Dachel reads Left Brain/Right Brain. I only wish she would link more. Perhaps to the multiple posts here calling for more environmental autism risk factor research.

    Perhaps she could link to this article, noting that the previous IACC called for a large effort in environmental research

    Perhaps a link to a discussion of whats the IACC is really charged to do:

    Or vaccines and GI issues research that is ongoing:

    And so much more. One might speculate on why she’s OK with the misconceptions that abound on these topics and more. Rather than speculate, I’ve tried to correct those misconceptions 🙂

  5. Andrew November 23, 2012 at 12:48 #

    Indeed she does seem to lack a certain touch of self-awareness. But that might be giving her too much advice.


  1. Autism Hearing? Let yourself be heard - November 21, 2012

    […] Read more at Left Brain Right Brain. […]

  2. » Blog Archive » LeftBrainRightBrain urges to congress to do nothing about the epidemic - November 21, 2012

    […] “Autism Hearing? Let yourself be heard” […]

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