The Autism Policy Reform Coalition’s Futile Fix – Under Construction?

Broken egg isolated on white background

By Jake Crosby

The Autism Policy Reform Coalition (APRC) is an umbrella organization of groups that support “fixing” the Combating Autism Act, now renamed the Autism CARES Act. APRC’s member organizations include SafeMinds, the National Autism Association (NAA), Talk About Curing Autism (TACA) and Generation Rescue.

APRC’s main aim specific to autism causation is the creation of an “Office of Autism Spectrum Disorder Research” at the NIH, modeled after the agency’s Office of AIDS Research. This proposal originated with SafeMinds, which appears to be leading the coalition.

Curious, I emailed APRC some questions below highlighting my concerns about its proposed “fixing.”

Hi,

I have several questions I would like for you to address regarding your coalition.

1. Why do you want an autism research office in a federal agency culpable for covering up and whitewashing autism causation, that supports the stifling of debate and also supports libelous attacks on scientists?

2. Why is one of your biggest political allies Biotechnology Industry Organization’s two-time “Legislator of the Year” Mike Enzi, who published a report calling clear-cut cases of federal scientific misconduct “not substantiated”?

3. Why do you ask for a greater “federal response” from agencies caught hiding, manipulating and misrepresenting research?

4. Why does the only IACC representative of any of your member groups never mention this malfeasance as she sits in committee meetings along side some of its worst perpetrators?

5. Why do your member organizations in your coalition to influence autism legislation include SafeMinds, which hijacked the 2012 congressional autism hearing by misrepresenting its original organizer to congressional staff?

I look forward to a timely response to my questions.

Sincerely,

Jake Crosby, MPH
Editor, Autism Investigated
www.autisminvestigated.com

I’ve received no word back, so I can only imagine how APRC could defend asking for an “Office of Autism Spectrum Disorder Research” in an agency known to cover up evidence that vaccinations are causing autism, exemplified by none other than NIH’s director of strategic planning for vaccine research, Gordon Douglas:

“Four current studies are taking place to rule out the proposed link between autism and thimerosal…In order to undo the harmful effects of research claiming to link the [measles] vaccine to an elevated risk of autism, we need to conduct and publicize additional studies to assure parents of safety.” 

Would Act Up want an Office of AIDS Research in the NIH if it were trying to cover up that HIV is causing AIDS?

Not likely.

Weeks after my email and days after the Senate delayed voting on the Autism CARES bill opposed by APRC, the APRC website was gutted and the webpage describing APRC’s proposed autism bill was scrubbed. All that remains now is a blank homepage with a logo.

APRC supported the delay on the premise of giving the public a chance to read the CARES bill and understand what it is asking for. Yet APRC’s proposed alternative is no longer available on APRC’s website.

Addendum, July 2nd, 2014: In response to Autism Investigated, APRC confirmed it is moving to a new website that is under construction yesterday on Facebook: “Contrary to this article, we are developing a more comprehensive website resulting from the many inquiries and increased interest in our platforms and ideas. We’ll post the new improved link when it’s ready. Stay Tuned!”

Addendum, July 10th, 2014: On July 6th, I commented under the above statement, asking APRC:  “Why did you scrub your old website before the new one could replace it?” I got no answer. The old APRC website autismpolicy.org now re-directs to autismpolicy.net, which is “Password Protected.”

Addendum, July 11th, 2014: The new website is now publicly available. The National Autism Association is no longer listed as a member organization of APRC.

Jake Crosby is editor of Autism Investigated. He is a 2011 graduate of Brandeis University with a Bachelor of Arts in both History and Health: Science, Society and Policy and a 2013 graduate of The George Washington University School of Public Health and Health Services with a Master of Public Health in Epidemiology. He currently attends the University of Texas School of Public Health where he is studying for a Ph.D. in Epidemiology.

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16 Thoughts on “The Autism Policy Reform Coalition’s Futile Fix – Under Construction?

  1. Andrea on June 30, 2014 at 10:03 pm said:

    Oh wow….blank page….not reassuring at all.

  2. Kelly on June 30, 2014 at 10:10 pm said:

    Wow, I must have had my head in the sand. I hadn’t even heard of this APRC until now. The same people keep popping up, with new identities. It’s getting so old. Why can’t they just STOP already?

    Thanks, Jake.

  3. Doug Troutman on July 2, 2014 at 2:20 am said:

    Looks like controlled opposition to me.

  4. Doug Troutman on July 3, 2014 at 1:03 am said:

    I went back again and listened to your talk at AO which you did a great job on. The question is “Who is Kathleen Siedell?” I looked her bio and there isn’t much there except her attacking the Geiers and Boyd Haley. She has a little experience caring for an autistic child but that is about it. No scientific background and really not much of a writer or journalist. Why would Kirby or Dan want to be associated with her at all?
    Where did she get all of her information? This story really stinks and I would like know where did she really come from,

    • It was not information she posted on her website, Doug, it was misinformation. I say “was” because her website – or at least her blog – is no longer up.

      Dan Olmsted can actually be seen online in a YouTube video bragging about his support for Seidel at a past AutismOne conference. He certainly doesn’t like to discuss it now, though, and totally dodged it when I confronted him about it once on Facebook. I still find it hard to believe that he and David Kirby supported her solely because David Gorski begged them too. I would have thought Olmsted would have at least allowed discussion about it on AoA rather than have Kim Stagliano censor any discussion of it if he was so sure supporting Seidel was the right thing to do.

      How ironic then that one year after Olmsted called Seidel a journalist at AutismOne in front of a Chicago Tribune reporter, the Trib would begin a series of hit pieces authored by prospective pharma PR agent Trine Tsouderos using Seidel’s very talking points. Kim Stagliano was one of the targets.

  5. Doug Troutman on July 3, 2014 at 11:39 pm said:

    Very telling video of Big Dan. The Tribune hit job started at the USAAA/CoMeD conference in Cherry Hill, New Jersey. You are correct that they used the same talking points as Siedel and is was all brought out in the Tribune when the Autism One conference started. Somebody put those talking points together and I don’t think Tsouderos or Siedel are smart enough to have done that. It was total propaganda just to shock people. I was there and I could tell that AOA people were not going to help defend the people being attacked. Dan’s video just about makes me want to puke. He or Kirby had no business being involved in the Syke’s lawsuit. Why would the want to associate themselves with Gorski? This is really a screwed up deal.

    • I wasn’t aware of that conference. I know that The Trib’s hit pieces against the Geiers began during the AutismOne 2009 conference using Kathleen Seidel’s talking points – exactly one year after the AutismOne 2008 conference where Dan Olmsted told The Trib that Seidel is a journalist on video. Then in the beginning of 2010, The Trib went after Boyd Haley and Olmsted’s managing editor Kim Stagliano – also using Seidel’s talking points.

      Ironically, the person Dan Olmsted blamed for The Trib’s flip-flop in a conversation I had with him about it was Ken Reibel. He was the person who videotaped Olmsted tell the Chicago Tribune that Kathleen Seidel is a journalist. So Reibel caught Olmsted on camera contributing to the problem he would later blame on Reibel.

  6. I noticed the scrubbed website, which is poor timing if you wish to replace the Autism CARES ACT with the APRC. How do you know the alternative if there isn’t even a mission statement? But, I have my own reasons to try and defund and disband IACC, which terribly under serves the autism community. Tom Insel has no business in delegating funds regarding autism research nor does he have the capability in setting its tone. He must go… If APRC cannot refocus, diversify and fund the understudied areas that impact autism families then they too should be replaced. I understand why they want a federal associated office ~ money… The U.S. government can come up with cash to fund research grants, which are badly needed to facilitate progress.

    One idea is to construct a separate (independent) oversight agency like the National Transportation Safety Board in aviation to oversee or blow the whistle on excessive duplication of research, narrow focus, wasted funds, and obstruction from finding all the clutch of autism etiologies.

    • APRC does not want to get rid of IACC, especially when their principal member organization SafeMinds has a rep on the committee. APRC wants to create yet more bureaucracy on top of bureaucracy with their NIH research office. I don’t believe in the creation of a whole separate agency either; I feel there is too much government overreach, and that is the cause of our troubles.

      • What would you suggest by way of funding autism research, and providing oversight.

        • Get rid of the vaccine program – leave vaccine promotion to doctors and drug companies, let government only worry about safety.

          • Barry on July 9, 2014 at 11:34 am said:

            I agree with getting rid of the vaccine program, but they also need to rescind the total liability shield that the industry now enjoys.

            If doctors and drug companies still want to promote vaccines, then let them do it on their own dime. And with the knowledge that they WILL be held accountable by a jury of their peers, in a court of law, for every single injury that those vaccines cause.

  7. Bayareamom on July 12, 2014 at 8:41 pm said:

    Barry,

    You stated, “If doctors and drug companies still want to promote vaccines, then let them do it on their own dime. And with the knowledge that they WILL be held accountable by a jury of their peers, in a court of law, for every single injury that those vaccines cause.”

    Couldn’t agree with you more! Took the words right out of my mouth…

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