Secretary Burwell it is beyond unacceptable that there is no seated IACC

24 Oct

In the U.S. we have a promise from our government to focus attention on autism and to include community participation in that effort. There is a law in fact (Public Law No: 113-157) although you may think of it as the Autism CARES Act or the previous bills (the Combating Autism Act and the Combating Autism Reauthorization Act).

That law stipulates that the Secretary of Health and Human Services shall appoint a committee:

Establishment.–The Secretary shall establish a committee, to be known as the `Interagency Autism Coordinating Committee’ (in this section referred to as the `Committee’), to coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder.

This Committee, the IACC, has specific annual deliverables such as a Strategic Plan for autism research and an update of advances in autism research. The Committee is required to include non Federal Government members including autistics, parents and members of large non-government autism organizations. Regular meetings are to be held and public input solicited.

And none of this is happening.

With the new law required more from the government. For example, a report on autistics transitioning out of school. While the law doesn’t require direct IACC input in this, that would be the natural way to bring public input into that report (and to make sure that report is, indeed, being produced). Would you like to see that the report includes the needs of students transitioning to high support living placements? Or those who are in need of job support? Would you like to know that medical issues are being addressed? Would you like to have your voice heard at all in this process?

Well, as of now, it isn’t happening.

And there is no reason for that.

Let me repeat this: there is NO REASON that an IACC isn’t in place right now. And it was not Congress’ intent that there be a gap in IACC activity when they drafted this law. Consider this paragraph from the House report that was produced with the bill. The Congressional Committee that drafted the bill stated:

The Committee appreciates the diverse makeup of IACC, and would like the panel to continue to represent the diversity within the autism community and remain a place where all viewpoints can be heard. Current members include parents and legal guardians, individuals with an autism diagnosis, advocacy organizations, and medical researchers. The Committee believes that these groups should continue to be represented. After previous reauthorizations of the Combating Autism Act, IACC has been dissolved and reconstituted. The Committee believes that this is unproductive and disruptive, and would like IACC to remain active, as the changes in this bill are instituted to ensure continuity.

Let’s get a little into the details here. The previous IACC was dissolved at the end of September, 2014. This is the date stipulated in the law as enacted in the Combating Autism Reauthorization Act (CARA). All well and good except for one very important point: the provisions under CARA were superseded by Autism CARES Act before the sunset of the IACC.

In other words, the law as in place in September 2014 did not call for the IACC to be disbanded. I will state that I was the only member of the IACC to voice opposition to being disbanded. The intent and the wording of the law was clear to me: there was no reason for us to disband.

Even if I am completely wrong about that, there is no reason why a new Committee has not been formed. Consider the last time an IACC was dissolved and reformed.

Committee dissolved in September of 2011. The law in place at the time stipulated this. The reauthorization was signed into law the next day.

The new committee (of which I was a member) was announced at the end of March 2012. Yes, six months passed without a committee being in place.

The new committee did not meet until July of 2012. Yes, over eight months after the previous IACC was dissolved. Consider that the previous full meeting was in July of 2011 and you see that a year had passed without a meeting.

That was unacceptable.

And that was nothing compared to the situation we have today. The last IACC was dissolved at the end of September 2014. Over a year ago. And the last full committee meeting was in July of 2014. If a new IACC were announced today, given the time that it takes to organize meetings, we wouldn’t likely see a new Committee meet until February of 2016 at the earliest.

At best, we’ve lost about 2 years. At best.

The Strategic Plan that is in place today is outdated. The goals and strategies outlined in it have deadlines that have already passed. No annual autism research updates have been provided to Congress for 2014 or 2015. No advice has been provided to the Secretary.

Public input has not been heard by decision makers who are members of the IACC. And that is one of the greatest losses.

And now consider this: Autism CARES is an example of a “single disease” bill. Leaving aside the term disease, it’s worth noting that this sort of legislation is quite unpopular now in Congress. As a community we are lucky that we have this in place to focus federal attention and funding on autism. Congress promised funding and asked for some small things in return: a committee and annual reports from that committee.

I worry that by not seating a new committee we endanger the chances for a future re-authorization. If the Secretary (and we as a community) don’t seem to care about the existence of the Committee, what message is being sent to Congress?

In case you are wondering how valuable the IACC is–the IACC has acted as a model for other advocacy communities in terms of providing for public/federal partnership in crafting Federal strategies. There a many groups that would gladly take on an IACC type committee for themselves.

The IACC is a part of the framework that Congress promised to our communities. Promised and legislated. As I say above, it is beyond unacceptable that no Committee is currently in place.

By Matt Carey

61 Responses to “Secretary Burwell it is beyond unacceptable that there is no seated IACC”

  1. Strawman October 24, 2015 at 03:00 #

    Why? Who is responsible? What can we do? So many valueable lives depend upon decisions made.

    • Strawman October 28, 2015 at 16:40 #

      From Wiki: “The vaccine schedule for infants expanded in the 1990s to include more vaccines, some of which, including the Hib vaccine, DTaP vaccine and hepatitis B vaccine, could have contained thiomersal. The number of diagnoses of autism grew in the 1990s, leading parents of these children to search for an explanation for the apparent rise in diagnoses, including considering possible environmental factors. The dramatic increase in reported cases of autism during the 1990s and early 2000s is largely attributable to changes in diagnostic practices, referral patterns, availability of services, age at diagnosis, and public awareness, and it is unknown whether autism’s true prevalence increased during the period.” Why don’t they know the true prevalence during this period? If they counted the cases of autism such as Iverson and the Wright’s grandson and all the other kids with severe classic autism born in the 90’s and compare before and after this so called increase then they might have a some idea if it was better diagnosing and awareness. Maybe this is too simplistic but any teacher or parent can diagnose classic autism . I wish we could put an end to the vaccine debate and concentrate on more pressing matters. Also from Wiki: ” Alison Singer, a senior executive of Autism Speaks, resigned from the group in 2009 in a dispute over whether to fund more research on links between vaccination and autism, saying, “There isn’t an unlimited pot of money, and every dollar spent looking where we know the answer isn’t is one less dollar we have to spend where we might find new answers.” I believe whatever money there is should be spent on a better life for all children and adults with autism who need help instead of the vaccine controversy which is called the biggest hoax of the last 100 years. It is a shame that HHS is too busy or are not interested enough to continue the IACC this year.

      • Sullivan (Matt Carey) October 28, 2015 at 17:10 #

        Well, they just announced a new committee. And a meeting next month.

        I would strongly suggest putting your comments in writing to the committee.

  2. Eileen Nicole Simon October 24, 2015 at 09:35 #

    Thank you for posting your anger with the new HHS secretary. I sent email to her, and to several others at HHS. The only response I got was an automatic out-of-office reply. So there are people at HHS who receive email.

    I contacted my senators and representative, and received only form-letter replies. I went into Elizabeth Warren’s Boston office to try to setup an appointment with her, but autism is clearly NOT an important issue for her.

    I wrote to President Obama, and received the same form-letter reply I have gotten from him on attempts to bring attention to autism, and that autism should be a strong focus of his “brain initiative.” Obama’s responses all inform me that he is committed to “leveling the playing field for all people with disabilities.” In other words, “lump it lady.”

    I have been trying for 50+ years. Good luck to all of you victims of the autism epidemic of the past three decades. I am old enough to remember polio, tuberculosis, measles, and more. I cannot understand why autism and other serious developmental disabilities like cerebral palsy, seizure disorder, ADHD, and dyslexia have been so neglected. Except these are considered to be hereditary, so “stuff it stupid.”

    The IACC was a disappointment. For 12 years, since 2003, I submitted “public comments,” but my comments were all passed over for discussion. Why was asphyxia at birth dismissed as so simplistic? Over and over I pointed out the vulnerability of the brainstem auditory pathway, and its importance for maturation of language circuits in the cerebral cortex, and for a child’s ability to learn to speak “by ear.”

    The vaccine issue might never have come up, If the clear medical error of clamping the umbilical cord immediately after birth had been stopped.

    • Sullivan (Matt Carey) October 24, 2015 at 19:41 #

      I recall John Robison discussing your comments. I recall discussing your comments here multiple times. I recall pointing out to you that research is ongoing in the area you asked for and posing the question to you: do you want discussion or action? Because you are getting action in research on cord clamping. Did you want me to repeat that in Committee? If so, you could have brought it up yourself.

      No one on the IACC dismissed you, no one considered your opinions “stupid” no one considered your ideas unworkable because they were “too simplistic”.

      “Good luck to all of you victims of the autism epidemic of the past three decades.”

      The victims of the “autism epidemic” are victims because everyone ignored the obvious social influences that were behind it. The victims are those without supports and services because we have focused so much attention on other areas. There are so many who are undiagnosed because people were so wedded to an “epidemic” that they not only ignored the adults and minorities and other underserved groups–they actively denied their existence. All to support the idea of an epidemic.

      • Eileen Nicole Simon October 25, 2015 at 00:52 #

        Thank you for your thoughtful response to the rant I posted on the IACC this morning. Yes, there was some discussion of cord clamping, also by Anshu Batra, Lyn Redwood, and Walter Koroshetz. Dr. Koroshetz is a neurologist, and also corresponded with me by email.

        I hope the IACC will be reinstated, and also that more time for discussion be scheduled, including back and forth discussions. Three minutes (Gettysburg address length) are enough for presentation, but then discussion should include the presenter as well as committee members.

        Autism was not anywhere near as prevalent 50 years ago as it is now. Maybe autistic children were in institutions. My son was not allowed to attend public school because he could not talk. I am eternally grateful that he was admitted to the inpatient children’s unit at the Massachusetts Mental Health Center. That is where he got intensive professional help, and finally learned to speak just before he turned six.

        I don’t see many people my son’s age who are autistic. This is why he is such a misfit in the group home for schizophrenic men he is in, and he is a chronic run-away. He needs a program where he could be trained for employment. He is far more capable than he gets credit for. I keep trying.

  3. Jonathan October 24, 2015 at 16:00 #

    solution is easy. Just have congress repeal the CARES act (which it should in my opinion), then there would be no IACC and no need for one.

    • Sullivan (Matt Carey) October 24, 2015 at 17:35 #

      If we acted on your opinion we would lose $100M+ in annual appropriation authorization and the chance to directly influence policy and research directions.

      • Jake Crosby October 26, 2015 at 03:44 #

        Or put another way – we would stop wasting over $100 million to the illusion of influencing policy and research directions. Your reason for keeping IACC is actually the best reason for getting rid of it, but I understand you have a bias from being put on it.

      • Sullivan (Matt Carey) October 26, 2015 at 04:36 #

        I can understand how people who cling to the failed idea of a vaccine-induced-autism-epidemic feel that the IACC was a failure. They denied that any vaccine/autism research was ongoing (ironically even while co-funding some of it. Well, that’s not irony, that’s dishonesty). And they lobbied against the reauthorization of the CAA/CARA. Because they are no longer even partially autism organizations, but instead are just political groups stuck in the past.

        We could have had more influence, in fact, except for some political maneuvering by the vaccine/autism proponents. But that is another story.

        For those who cling to the failed idea of a vaccine-induced-epidemic, sure, the IACC has been a failure. Not much money has been spent on that topic. More than people believe, but not much.

        So, I understand your point. You are clearly wrong, as you usually are, but I understand your point because I’ve been watching your groups for so long.

      • Jake Crosby October 26, 2015 at 23:42 #

        I stand corrected, the best reason for getting rid of IACC is not the $100 million+ wasted – albeit a damn good one.

        No, the best reason is that one of the people you sat on the committee with chucked evidence for a vaccine-autism connection into the garbage according to her own colleague. You are the only person I can think of who’s petitioned a member of the US Cabinet for a position that sits you alongside someone who committed federal crimes in front of a whistleblower. You’re better off being ignored.

      • Sullivan (Matt Carey) October 26, 2015 at 23:56 #

        I have no idea what you are talking about. Perhaps you could speak in non echo chamber phrases?

      • Sullivan (Matt Carey) October 27, 2015 at 00:02 #

        Do you seriously buy into the “whistleblower” stuff? Even after it became obvious that Wakefield and Hooker lied? Didn’t you read their complaint? Didn’t you notice where they had to change the key part of the study protocol to fit their story?

        Let’s see, what did William Thompson say when Brian Hooker tried to get him on tape claiming that there was fraud? That’s right, Thompson refused to do so.

        You accuse others of “federal crimes”. One thing the IACC needs is people who have the critical thinking skills to filter out nonsense.

      • Sullivan (Matt Carey) October 27, 2015 at 00:07 #

        Dr. Hooker: And then you basically deviated from that particular plan in order to reduce the statistical significance that you saw in the African American Cohort.

        Dr. Thompson: Well, we, um, we didn’t report findings that, um…All I will say is we didn’t report those findings. I can tell you what the other coauthors will say.

        Did you read that in the transcripts of the phone calls?

        Was there fraudulent intent in the way the data were handled? Asked and answered: No.

        When people lie to me, I don’t believe them. Funny how some people can spend 20 years lying and people never catch on.

      • Sullivan (Matt Carey) October 27, 2015 at 19:23 #

        “No, the best reason is that one of the people you sat on the committee with chucked evidence for a vaccine-autism connection into the garbage according to her own colleague.”

        This was the statement that I didn’t get. But, OK, you are making an attack on Colleen Boyle. Cheap. Wrong. But now I know. Not surprised.

      • Sullivan (Matt Carey) October 27, 2015 at 19:25 #

        “You are the only person I can think of who’s petitioned a member of the US Cabinet …”

        So, did you understand the process when you wrote your fictional piece where Alison Singer “hand picked” me for the IACC? (yes, someone sent me that). I mean, you understand now that the selection is by the Secretary of HHS. So, did you misunderstand then? And if so, OK, you were ignorant. But now that you know you were wrong, have you asked to have that piece taken down? Or do you not care about being accurate in what you write?

      • Chris October 26, 2015 at 23:45 #

        Young Master Crosby, and why should anyone care about what you think? Give us a compelling reason to treat you as a mature thinking adult.

      • Sullivan (Matt Carey) October 27, 2015 at 00:08 #

        Young Master Crosby, and why should anyone care about what you think? Give us a compelling reason to treat you as a mature thinking adult.

        Because he should be held responsible for his actions and statements.

      • Chris October 27, 2015 at 01:50 #

        I suspect that neither Jonathan nor Jake understand how their actions affect the prospects for autistic adults like my son who need services, and accommodations as simple as just be patient enough to listen to him long enough to understand what he is saying. It both takes him longer to say something, and sometimes you need to ask him to repeat what he said.

      • Jake Crosby October 27, 2015 at 18:10 #

        Funny, you say you have no idea what I’m talking about even though it’s clear you do from your other comments. Clearly C-SPAN isn’t an echo chamber.

        Throw up all the smokescreens you want about Hooker and Wakefield. There is nothing that contradicts Thompson seeing his colleagues – including your fellow IACC member Coleen Boyle – discard evidence for a vaccine-autism connection into a trashcan.

      • Sullivan (Matt Carey) October 27, 2015 at 19:07 #

        I reread your comment and addressed those parts that were understandable.

        As to the above, don’t accuse others of throwing up smokescreens while you wildly toss chaff into the air. Did you address the fact that Hooker and Wakefield lied in their complaint to HHS? No. Just sidestepped it.

        What does that lie make their complaint? Theater. Nothing more. When the basis of your complaint has to be fabricated, you have no complaint.

        But, let’s look at your chaff anyway, shall we? It’s about as convincing as the old days when you would repeat Wakefield’s nonsense about not having a patent on an alternative vaccine. Funny how later it came out that he had business plans to develop it as a vaccine. But I bet he’s got some other cover up story that is being repeated. Or just flat out denial. Why you keep supporting him is beyond me.

        So, let’s consider your chaff, shall we?

        ” There is nothing that contradicts Thompson seeing his colleagues – including your fellow IACC member Coleen Boyle – discard evidence for a vaccine-autism connection into a trashcan.”

        Dr. Willingham discusses that statement here

        So, what contradicts you claim that Thompson saw them throw documents into a garbage can? Well, his own statement. Did you read it or are you just repeating what others say? I ask because that is standard Age of Autism fare. But back to your claim– You did catch the part where he said he wasn’t in the room, right? So, how did he see his colleagues do anything, exactly?

        Ever work in research? With confidential materials? I have. Ever order a big confidential bin to send old documents to be shredded? I have. Standard practice. And, yeah, keeping essential information is absolutely key to my job. Keeping everything, not so much.

        Let’s just say those facts are wrong. They aren’t but since you will dodge and weave, let’s take on the next step–the data to supposedly show a vaccine/autism connection (and I realize the bar you have for evidence is very low when it comes to supporting your preconceived ideas) still exists, right? In that dataset that was available since the study was published?

        In a bit I’ll bring up the

        By the way, did you ever wonder why Wakefield and Hooker didn’t trust people enough to provide them with a copy of the actual study protocol for the DeStefano MMR study? The only place to get it that I am aware of is right here.

        Whenever Wakefield is hiding something, it’s pretty sure it’s worth looking at it.

      • Sullivan (Matt Carey) October 27, 2015 at 19:12 #

        In their complaint, Wakefield and Hooker claimed that the protocol stated

        The only variable that will be assessed as a potential confounder using the entire sample will be the child’s race.

        But the actual protocol states:

        The only variable available to be assessed as a potential confounder using the entire sample is child’s race.

        emphasis added in both cases.

        Recall that in his video, Wakefield actually had a screenshot of the protocol–complete with the accurate wording.

        But, hey, support the guy. So what if he thinks so low of his own audience that he lies to you and still counts on you supporting him.

      • Sullivan (Matt Carey) October 27, 2015 at 19:15 #

        Now another fact you just avoided: Thompson specifically declined to state that his group “deviated from that particular plan in order to reduce the statistical significance that you saw in the African American Cohort”

        Again, from the transcripts:

        Dr. Hooker: And then you basically deviated from that particular plan in order to reduce the statistical significance that you saw in the African American Cohort.

        Dr. Thompson: Well, we, um, we didn’t report findings that, um…All I will say is we didn’t report those findings. I can tell you what the other coauthors will say.

        Now, that’s different than the story that Wakefield and Hooker are telling.

        Again, support liars all you want. They count on it. They know that if they say vaccines cause autism they can say just about anything they want and people like you will back them up.

      • Sullivan (Matt Carey) October 27, 2015 at 19:22 #

        Let’s keep going, shall we?

        How about that timeline that Hooker concocted? You know, where the CDC team changed the protocol after seeing the race data? Except that the protocol was drafted in September and the first race data weren’t presented until November?

        Let’s not even go into that–can you point me to where you distanced yourself from the ugly race-baiting video that Wakefield put together? Or do you support lying and stoking racial hatred in order to promote the vaccines-cause-autism agenda?

        If you guys had actual facts you would use them. Instead you make stuff up and resort to the most base of attacks. Show me you have integrity–show me where you distanced yourself from that “Tuskegee Experiment” video.

      • Jake Crosby October 27, 2015 at 21:18 #

        You wrote four long comments to try to refute me only to provide further proof of what I, a senior CDC scientist and a sitting US congressman have all been saying. Studying race effects in the total sample was part of the protocol, but those results were thrown in the garbage instead of being reported as they should have been. As you know, keeping all essential materials is integral to research including at your job. Yet CDC did the opposite of this, as the information you’ve provided further shows.

        I don’t even understand what you’re trying to accomplish here. How do you support environmental research as you did at IACC 2012, but go to the most absurd, self-contradictory efforts to deny that the government is lying about vaccine dangers?

      • Sullivan (Matt Carey) October 27, 2015 at 21:59 #

        I have written multiple long articles on the topic of Wakefield and Hooker lying about William Thompson. I merely summarized some of those points in my successful refutation of their talking points that you repeat.

        Which is to say, one of us is going to the source and thinking for himself and the other is accepting stories by known liars.

        The fact that you refuse to address the clear points I have made is very telling. It tells us all that you know you can’t even try to refute them.

        Clearly and demonstrated here, Wakefield and Hooker lied in their complaint by changing the wording of the protocol to fit their story. And you won’t even address that.

        Clearly the protocol was in place–including the statements to include the birth certificate sample–before the race data were analyzed. Protocol was in September. First race data was in November. Ironically, Thompson thought it was even later than that, and told Hooker so. And, yet, Hooker lied and told us all that the protocol was changed after the race data were analyzed. And you won’t even address that.

        And, given that you refuse to distance yourself from the race-baiting video, I must conclude that you approve of such ugly tactics. Shame on you, and all who resort to such base attacks.

        Hooker claimed that Thompson stated that the CDC specifically diluted the race effect to make it go away. But that’s not what Thompson told him, even when Hooker tried to lead him into getting that on secret tape. And you don’t address that.

        You don’t defend because you can’t. Which makes one wonder why you cling to ideas that are propped up with what you must know are lies.

      • Sullivan (Matt Carey) October 27, 2015 at 22:03 #

        Supporting environmental risk factor research does not equate to supporting putting more money into vaccine/autism research.

        Tell me, what actions did I take that hindered actual environmental risk factor research? You can’t because I didn’t. Yes, I did not support vaccine/autism research.

        Funny thing–the only place where you can get discussions of the vaccine/autism research that was ongoing is here. Not at AoA. Not at any of the other sites that support that failed idea. Here. Why? I can’t read minds, but it looks to me like the political action of pretending that there was none ongoing was more important than telling the truth.

        Perhaps you can prove me wrong. Point to discussions of the vaccine/autism research that was ongoing the past few years.

      • Sullivan (Matt Carey) October 27, 2015 at 22:07 #

        Well, if a sitting Congressman says it, it must be true.

        I do wonder how William Thompson feels about becoming a sock puppet for all of you. As I’ve shown, he didn’t say what you claim he said in multiple instances. But instead of addressing that, you just pretend like the facts before you don’t exist.

        You don’t understand the word “essential”. What “essential” information was thrown into a “garbage” can? Be specific. That’s right, you can’t. Read Brian’s comment above.

      • brian October 27, 2015 at 21:19 #

        It’s surprising that that Jake Crosby, MPH, is having so much trouble understanding Thompson’s clear statement, since it requires only a college-level Flesch-Kincaid reading level.

        Here’s what Thompson said:

        The remaining four co-authors all met and brought a big garbage can into the meeting room and reviewed and went through all the hard copy documents that we had thought we should discard and put them in a huge garbage can.

        1.) Thompson stated that his co-authors discarded hard copies of documents that Thompson and his co-authors (“we”) had “thought that we (that is, Thompson and his coauthors) should discard.” Thompson agreed with his co-authors that the hard copies should be discarded–before they were discarded.

        2.) What Thompson’s co-authors discarded were hard copy documents: printed copies of computer files. Standard CDC protocol mandates destruction (shredding or burning) of hard copies and retention of data sufficient to reconstruct the study findings.

        Since Crosby understands that the data set was made accessible to qualified researchers as well as to BS Hooker, he must also understand that the data was not destroyed. Thompson agreed to the destruction of hard copies that were clearly backed up by computer files, and that the data remained accessible. Accordingly, Jake Crosby must know that he is lying, again.

      • Jake Crosby October 28, 2015 at 01:10 #

        Matt, your comments are priceless. In a discussion of what went on at CDC, you care about anything but CDC and anyone but Thompson and his colleagues. You also sure have a hard time accepting what is irrefutable proof of a CDC cover-up for someone so quick to see evil in people outside CDC.

        You think Thompson not saying something at some point in his conversation with Hooker is proof Hooker is a liar, you think some wording being inconsequentially altered in a poorly written complaint is proof of a conspiracy between Hooker and Wakefield, and most hilariously – you think me not commenting on Wakefield’s cheesy videos is proof I’m a race-baiter! lol

        But when someone inside CDC comes forward to say fraud was committed and he has the documents and the data to prove it, the burden of proof suddenly becomes impossible to satisfy. If I were as paranoid about the motives of people I disagree with as you are, I’d cite this as proof that you were in on it. There’d be much better justification for that paranoia than there is for yours.

      • Sullivan (Matt Carey) October 28, 2015 at 02:07 #

        “priceless”. Instead of actually participating in the discussion you dodge and throw out “priceless”?

        I thought better of you.

        Answer my questions, why don’t you? Don’t play childish debate games by projecting onto me actions that are not mine, but participate like you actually have something to say.

        You’ve been lied to and you are spreading those lies. And you don’t even have the courage to discuss that. This is what your movement lacks–courage. You can shout and you can throw invective but you lack the guts it takes. And it isn’t just you.

        I didn’t say that Wakefield and Hooker were in a conspiracy. I said they lied. WHich they have. Demonstrably. Repeatedly.

        What was the timeline of events that they claimed? That’s right, the protocol was changed after the race results were in. The fact that you refuse to even discuss that demonstrates that you know that you are in the wrong. You are supporting claims that are lies.

        “Lol”? What is this, the 8th grade? You get challenged with facts that go to the heart of your argument and you respond with “lol”?

        I’d love to be at your defense. “So, Mr. Crosby, your work is shoddy”. “Well that’s priceless. Lol!”

        You wanted to be on track to be a professional. Start acting like it.

        “If I were as paranoid about the motives of people I disagree with as you are”

        I will leave that for others who have watched you over the years to discuss.

        paranoia is a mental health condition. Using it as a slur as you do is demeaning and stigmatizing. Once again, start acting like a professional or you will forever be “young master Crosby” as you have seen here.

        “you think me not commenting on Wakefield’s cheesy videos is proof I’m a race-baiter! lol”

        In the effort it took you to type that out all you had to do was say, “yep, that was a disgusting bit of work.” Instead you fail to show the courage that it takes to be independent. You fail to take a stand against such an example of gross misconduct on the “leaders” of your movement.

        Irrefutable proof? You have a low bar for that. As I’ve written here and many times previously on this site, your “irrefutable proof” is bunk. But you just can’t bring yourself to discuss the facts I’ve presented so you resort to taunts.

        I’ve been at this way too long to be baited by you with your taunts. But I will point out how childish they are.

        You are just spinning your wheels now, and you have been for some time. Dodging and weaving to make it seem like you have a leg to stand on. Which you don’t.

      • Sullivan (Matt Carey) October 28, 2015 at 02:29 #

        “You think Thompson not saying something at some point in his conversation with Hooker is proof Hooker is a liar”

        Let’s go over that again, shall we?

        It is the key part of your claim. Hooker knew it and that’s why he tried to lead Thompson saying it (while secretly taping him). Hooker tried to get Thompson to say that he and his team acted to hide an association. And Thompson refused to make that statement.

        There’s a reason why this isn’t getting traction in Congress. Well there are multiple reasons–one being that your team foolishly let Andrew Wakefield handle the publicity. The main one being that there isn’t any substance to your claims. For some odd reason Thompson wants to testify. Enough that he made the incredibly bad decision to seek out and trust Brian Hooker. OK. What exactly–and exactly is key–is the supposed smoking gun? Because the story your team concocted is based on lies. If you had something real, why are you basing your public claims on lies?

        Simply put-you don’t have anything real.

        Funny thing is–I respond to your false claims. You dodge mine. “lol” and “priceless” is all you’ve got.

      • Sullivan (Matt Carey) October 28, 2015 at 02:11 #

        If Wakefield or Hooker (or many others in your movement) worked for me, they’d be fired. Not for promoting false ideas, but for their lack of integrity.

        You wouldn’t get an interview. Again, not for the fact that you spread misinformation, but because you lack the courage to actually hold an adult conversation. I wouldn’t be at this as long as I have if I couldn’t take dealing with opposing views. But over the years it has just become so apparent how hollow your movement is.

      • Jake Crosby October 30, 2015 at 00:50 #

        Matt, as you continually fail to grasp – this about the CDC, not Hooker, Wakefield or me. But I understand your obsession with us, it allows you to avoid facing what you don’t want to believe. You might also want to practice what you preach about childish attacks instead of resorting to them yourself and inciting the same from other commenters.

        Don’t think for two seconds you were put on IACC because the feds took what you said seriously. You just wrote a blog that repeated their talking points. So you were given a little pulpit to preach from every couple of months for a period of two years and on the taxpayers’ dime, thanks in no small part to Alison Singer.

      • Sullivan (Matt Carey) October 30, 2015 at 01:50 #

        Mr Crosby,

        You used disability, mental illness in a stigmatizing manner. I asked you to show the courage to accept that you made a mistake and apologize.

        Your next approved comment here will address that. Why do you believe you deserve the respect of continued conversation when you act immature and refuse to show respect by responding?

      • Sullivan (Matt Carey) November 1, 2015 at 03:54 #

        Mr. Crosby,

        I made a very clear statement. I meant it.

        You used disability, mental illness in a stigmatizing manner. I asked you to show the courage to accept that you made a mistake and apologize.

        Your next approved comment here will address that.

        I’m not going to force you to apologize. If you had guts and actually understood what you were doing, you would apologize. But you will address your use of disability in a stigmatizing manner.

      • Sullivan (Matt Carey) November 4, 2015 at 23:52 #

        Interesting–I ask you to address my request. Not do what I asked of you, but address the request.

        And you didn’t even have the courage to do that.

        As I noted above, your movement fails repeatedly when it comes to demonstrating courage and integrity. JB Handley, for example, seems to think that being a loud bully is a substitute or a smokescreen for his lack of integrity and courage. He couldn’t even bring himself to email Paul Offit when the time came to fulfill his commitment. That’s cowardly enough, but he also apparently never even saw that he owed Dr. Bonnie Offit an apology.

        But that’s small potatoes compared the fact that you and others stand up in parent conventions to talk, but stand by silent while abusive “therapies” are sold to parents at these same conventions. You lend your name and reputation to these charlatans.

        If you ever get to a real science conference, you will notice that people stand up and comment and ask questions when people present bad science. In fact, you may be the recipient of such comments and questions. That’s what a real science conference is like. AutismOne and these other parent conventions put on a show of “science presentations” but it’s sales pitches.

      • Sullivan (Matt Carey) October 30, 2015 at 02:02 #

        You do not understand. Clearly and demonstrably you do not understand.

        I do not claim that what you are repeating are lies because it comes from Wakefield and Hooker. You are just dodging because I demonstrated why they are lies. I bring in Wakefield and Hooker to make a simple point: why didn’t you suspect these were lies? I mean, really, after years are you not suspicious of what they say?

        Remember years back when you came here to defend Wakefield? You repeated his talking points about how his patent wasn’t a vaccine patent. Even in the face of the clear language that showed it was. Later it came out that Wakefield had business plans to develop the vaccine.

        How many times does he have to play you for an fool before you catch on?

        That’s the point of bringing their names into the conversation.

        But you chose to debate them and hide from answering the facts.

        One of us has brought facts into this discussion. Repeatedly. You merely save the wand of invoking the “whistleblower” and make vague claims.

        Tell me, did you put together the timeline on your own? Did you work out that the claim was a lie that the protocol was changed after the race data were analyzed? Or did you just accept it? If so, why didn’t you check the facts?

        Just one example of the sort of hard questions that I have repeatedly posed to you and you ignore.

        If you don’t think you are obviously dodging, think again.

      • Sullivan (Matt Carey) October 30, 2015 at 02:04 #

        For whatever it is worth, I am not dodging your last comment. I let it stand as an example of your thought process.

      • Sullivan (Matt Carey) October 30, 2015 at 04:14 #

        Now for when this gets real:

        “Matt, as you continually fail to grasp – this about the CDC, not Hooker, Wakefield or me.”

        This isn’t about the CDC. This is about the autism communities. This is about making a better life for my kid and others like my kid.

        And you, your team and your mission get in the way of that. Because you would rather spend your time chasing conspiracies and obviously failed ideas about vaccines and autism than working to make a better life.

        How many articles are on your old home site–the Age of Autism–about SB277? A bill that has NOTHING to do with autism? A lot. How many are on the budget battle here in California to restore funding to the developmental disability system? None.

        How much effort have you spent on things that matter? Almost none.

        You guys have always been on the fringe, but now look at you. Allying with bigots. Even more, the Nation of Islam is closely associated with Scientology. And who has opposed autism treatment legislation? Twice in California? Scientology.

        Your team would rather ally with those who stand in the way of autism treatment than lose the chance to get a louder voice for your vaccine message.

        You lost your way.

      • Sullivan (Matt Carey) November 1, 2015 at 04:38 #

        Let’s get back to your attempt to slime both myself and Colleen Boyle of the CDC. You made a statement about me being the only person you know who petitioned the secretary of HHS to be on the committee with her. Well, I didn’t know she would be on it, but I have zero problem with it. Only in your tiny corner of the autism community is there a problem with the CDC. When you have to create conspiracies so broad that the CDC, AAP, and thousands of other people are involved, you don’t have anything real to work with.

        I already pointed out that this means you know your article at AoA was nonsense. But pointing out that articles on AoA are nonsense is just redundant.

        Now let’s discuss the irony and lack of self-awareness in your comment. You petitioned the Secretary to be on that committee as well.

        Now, let’s discuss the people with whom you have actively sought to ally yourself.

        Dan Olmsted, Mark Blaxill, JB Handley, Brian Hooker, Andrew Wakefield, Mark Geier, David Geier…oh, and let’s not forget the charlatan parade that is Autism One. Did you ever have the backbone to stand up to the absolute damaging nonsense that is sold there as “cures” for autism?

        I ask rhetorically.

        Not a one of those people I would consider worth my time.

    • Jake Crosby October 25, 2015 at 23:48 #

      I second that, Jonathan.

      • Sullivan (Matt Carey) October 26, 2015 at 04:46 #

        Which only serves to show that you put the political agenda of the vaccine antagonistic groups above working for a better life for autistics.

      • Jonathan October 26, 2015 at 17:59 #

        I don’t believe that vaccines cause most autism, with the possible exception of outliers like hannah poling or someone like that, yet I believe the IACC has been a complete failure and a joke. They claim they want diversity of viewpoints yet have had five pro-neurodiversity anti-cure persons on the spectrum as public members and not a single anti-neurodiversity pro-cure autistic, even though Roger Kulp fits that bill and has expressed an interest in being a public member. So I believe it is time to repeal the CARES act and abolish the IACC.

      • Sullivan (Matt Carey) October 26, 2015 at 18:03 #


        you persist in your “anti cure” statements.

        Show what happened on the IACC that supports that claim. I’ve asked you to do this for years and you have failed to respond.

        When your hypothesis doesn’t match the facts, your hypothesis is false.

      • Sullivan (Matt Carey) October 26, 2015 at 18:05 #

        “even though Roger Kulp fits that bill and has expressed an interest in being a public member”

        And he applied for the next IACC, correct? You are the one calling for no IACC, so you are the one calling for him to not participate.

      • Sullivan (Matt Carey) October 26, 2015 at 18:11 #

        As you note, the IACC is required to have a diversity of opinions.

        If you actually support that mission, you support the inclusion of pro-neurodiversity, even anti-cure, members to the IACC.

        So, do you support that mission? If so, state here that you support the inclusion of pro-neurodiversity members to the IACC.

        (edit to add-I purposely left off the “anti-cure” statement you erroneously tack on the those in the neurodiversity movement)

      • Sullivan (Matt Carey) October 28, 2015 at 02:30 #

        So, Jonathan,

        you claim that the IACC should not continue because it doesn’t fully represent the diversity of the communities.

        Yet you decline when asked to show that you actually support a diversity of opinions on the IACC.

  4. usethebrainsgodgiveyou October 24, 2015 at 20:26 #

    How is the 100m broke down? What agencies get what?

    • usethebrainsgodgiveyou October 24, 2015 at 20:56 #

      It really doesn’t seem like a lot with 11 centers of autism excellence, is why I ask. I wonder if they and the renamed SEED program are included, as well as epidemiological studies at the CDC.

      There was a lot of Kabuki Theatre going on at the meetings– one side scoring points against another… I know you took it seriously, though. I wish more people would. I don’t know how you could take the politics out of it long enough to quit fighting.

  5. Strawman October 26, 2015 at 16:51 #

    ” Would you like to see that the report includes the needs of students transitioning to high support living placements? Or those who are in need of job support? Would you like to know that medical issues are being addressed? Would you like to have your voice heard at all in this process? ” Yes! After reading about the IACC and the important work and input, I have total respect for you Dr. Carey. I am assuming that secretary Burwell has been contacted by many concerned. It seems that even those who have a voice are not heard. Please post if any follow up is forthcoming.

  6. Strawman October 26, 2015 at 16:54 #

    ” Would you like to see that the report includes the needs of students transitioning to high support living placements? Or those who are in need of job support? Would you like to know that medical issues are being addressed? Would you like to have your voice heard at all in this process? ” Yes! After rea Would you like to see that the report includes the needs of students transitioning to high support living placements? Or those who are in need of job support? Would you like to know that medical issues are being addressed? Would you like to have your voice heard at all in this process? ding about the IACC and the important work and input, I have total respect for you Dr. Carey. I am assuming that secretary Burwell has been contacted by many concerned. It seems that even those who have a voice are not heard. Please post if any follow up is forthcoming.

  7. Roger Kulp October 28, 2015 at 15:43 #

    Hi Sullivan,

    Yes I applied to the IACC.It was not easy considering I had never held a job,or had no education beyond high school,and had no clue about submitting such a formal application.John Elder Robison was a very big help for me here,and I am very grateful for his assistance.We had a lengthy email exchange,and Mr. Robison was able to take what I had written,and create a formal application to the IACC from my emails.For this I am very thankful.

    I felt I have a unique set of experiences,and could bring an equally unique voice to the table.I have been told by several top specialists no other adult has done what I have done.I am roughly the same age as Elizabeth Nichole Simpson’s son.I had an autism diagnosis as a child that was verbal,but otherwise very low functioning.I also had a mother who was very unique in that she refused to put me in an institution or other residential treatment center.Basically going against the wishes of teachers,school psychiatrists,etc.I lived with my mother eight up until she died,in 2012.

    I also have had a ridiculous number of medical issues,moreso than most other autistics.I have spent the last six years looking for answers to a lifetime of sickness and disability.Starting with a simple DAN! doctor,and working my way up the food chain to Arkansas Children’s Hospital,and now Johns Hopkins/Kennedy-Krieger.Along the way,I have picked up several other diagnoses besides autism,a rare inborn error of metabolism called Severe MTHFR Deficiency and Homocystinuria,and Cerebral Folate Deficiency Syndrome.It was thought for a long time I had genetic mitochondrial disease,because my presentation was so similar,but in the last couple of days,I have gotten the results of a Whole Exome Sequence,that shows I have an unknown variant of a very rare genetic disease.Definitely less than one hundred cases in the whole world.

    The WES is a wonderful tool.I really think every child or adult with complex,syndromic autism needs to have such a test done.If they did,it might do away with much of the vaccines-cause-autism discussion.

    Getting back to the IACC,I am sure there is a lot of information we,the general public,are not being told about what is going on at NIMH.I think Insel’s resignation caused a lot more trouble and turmoil than we are being told.It might not be until after the 2016 elections that a new IACC is seated.We may not like it,but that may well be the case.

  8. Roger Kulp October 28, 2015 at 23:59 #

    For Immediate Release Contact: Office of Autism Research Coordination/NIH
    October 28, 2015 E-mail:

    HHS Announces Appointment of New Membership and New Chair for the Interagency Autism Coordinating Committee

    The U.S. Department of Health and Human Services (HHS) today announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), reauthorized under the Autism CARES Act. After an open call for nominations for members of the public to serve on the committee, Secretary of Health and Human Services, Sylvia M. Burwell, appointed this group of individuals to provide her with advice to advance research, strengthen services, and increase opportunities for people on the autism spectrum. The public member appointees include three adults on the autism spectrum, several family members of children and adults on the autism spectrum, clinicians, researchers, and leaders of national autism research, services, and advocacy organizations. Many of the appointed individuals serve dual roles, dedicating their professional careers to helping people on the autism spectrum because of their personal experiences with autism spectrum disorder (ASD). The first meeting of the new committee will take place on November 17, 2015 in Rockville, Maryland.

    In addition to the new public members, the IACC will have a new chair when it reconvenes. Dr. Thomas Insel, who served as the Director of the National Institute of Mental Health (NIMH) and as Chair of the committee for more than a decade, announced his planned departure for Google Life Sciences in at the end of October 2015. Dr. Bruce Cuthbert, who will become Acting Director of NIMH on November 1, has been appointed to serve as the IACC Chair over the next year.

    Autism research, services, and advocacy organizations represented by new and returning appointees to the committee include: Association of University Centers on Disabilities, Arc of the United States, Autism Science Foundation, Autism Speaks, Autism Society, Simons Foundation, and Autistic Self Advocacy Network. Federal departments and agencies represented on the committee include several agencies within HHS: Administration for Children and Families, Administration for Community Living, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Food and Drug Administration, Health Resources and Services Administration, and National Institutes of Health; as well as Department of Education, Environmental Protection Agency, and Department of Defense .

    The responsibilities of the committee include annually updating the IACC Strategic Plan for ASD, preparing an annual summary of advances in ASD research, monitoring federal ASD activities, and providing guidance to the HHS Secretary on matters related to ASD.

    The public members appointed by the Secretary to serve on the renewed IACC are:

    David Amaral, Ph.D.

    Dr. David Amaral is a new public member of the IACC. He is a Professor of Psychiatry, Behavioral Sciences and Neuroscience at the University of California, Davis. He is also Beneto Foundation Chair and Founding Research Director of the UC Davis MIND (Medical Investigation of Neurodevelopmental Disorders) Institute, and Director of the Autism BrainNet. Dr. Amaral conducts research on the neurobiology of ASD. He received a joint Ph.D. in psychology and neurobiology from the University of Rochester and carried out postdoctoral work at Washington University in neuroanatomy.

    James Ball, Ed.D., B.C.B.A.-D.

    Dr. Jim Ball has served on the IACC as a public member since 2012. He is a Board Certified Behavior Analyst (BCBA-D) and President and CEO of JB Autism Consulting. He has worked in the autism field for more than 25 years, providing educational, employment, and residential services to children and adults affected with autism. He is a Board member of the Autism Society’s Board of Directors and is currently the Chair of the National Board. He received his Doctor of Education degree from Nova Southeastern University in Fort Lauderdale, Florida.

    Samantha Crane, J.D.

    Ms. Samantha Crane is a new public member of the IACC. She is Legal Director and Director of Public Policy at the Autistic Self Advocacy Network (ASAN) and an autistic self-advocate. Ms. Crane previously served as staff attorney at the Bazelon Center of Mental Health Law, focusing on enforcing the right to community integration as established by the Supreme Court in Olmstead v. L.C.. Ms. Crane holds a B.A. from Swarthmore College, with high honors, in Psychology, and she received her J.D. degree from Harvard Law School.

    Geraldine Dawson, Ph.D.

    Dr. Geraldine Dawson has served on the IACC as a public member since 2012. She is a Professor of Psychiatry and Behavioral Sciences in the Duke School of Medicine and a faculty member of the Duke Institute for Brain Sciences. Dr. Dawson also is Director of the Duke Center for Autism and Brain Development and President of the International Society for Autism Research. Dr. Dawson is a licensed clinical psychologist and researcher who has published extensively on ASD, focusing on early detection, intervention, and early brain development. She received her Ph.D. in Developmental Psychology with a minor in Child Clinical Psychology from the University of Washington and was a postdoctoral fellow at the University of California at Los Angeles.

    Amy Goodman, M.A.

    Ms. Amy Goodman is a new public member of the IACC. She is the Director of the Arc of the United States’ Autism NOW Resource and Information Center, which serves the needs of individuals with autism and their families. She is a self-advocate for individuals on the autism spectrum and holds a master’s degree in special education from Marshall University in West Virginia.

    Shannon Haworth, M.A.

    Ms. Shannon Haworth is a new public member of the IACC. She is the Public Health Program Manager for the Public Health team at Association of University Centers on Disabilities (AUCD) and a parent of a child on the autism spectrum. She has a master’s degree in Applied Behavior Analysis and a graduate certificate in Autism from Ball State University. She has also earned a Post Baccalaureate Graduate Certificate in Disability Leadership from Virginia Commonwealth University, is currently a doctoral candidate (DrPH) studying Public Health at Walden University, and is a certified Early Intervention Specialist for the state of Virginia.

    David Mandell, Sc.D.

    Dr. David Mandell has served on the IACC as a public member since 2012. He is an Associate Professor of Psychiatry and Pediatrics at the University of Pennsylvania’s School of Medicine. He is a health services researcher and psychiatric epidemiologist whose work focuses on identifying the best ways to organize, finance and deliver services to children with autism and other psychiatric and developmental disabilities. Dr. Mandell holds a Bachelor of Arts in psychology from Columbia University and a Doctor of Science from the Johns Hopkins School of Hygiene and Public Health.

    Brian Parnell, M.S.W., C.S.W.

    Mr. Brian Parnell is a new public member of the IACC. He has led a distinguished career in child welfare and disabilities services and as an administrator of public and nonprofit agencies, having supervised and managed social service programs for more than 20 years. Mr. Parnell currently works at the Utah Division of Services for People with Disabilities, Department of Human Services, and helped develop Utah’s Medicaid Autism Waiver program. Mr. Parnell is a parent of seven children, three of whom are on the autism spectrum.

    Kevin Pelphrey, Ph.D.

    Dr. Kevin Pelphrey is a new public member of the IACC. He is the Harris Professor in the Child Study Center and Professor of Psychology at Yale University and Director of the Yale Center for Translational Developmental Neuroscience. He also is the father of two children on the autism spectrum. Dr. Pelphrey’s research focuses on the development of brain mechanisms for social cognition in children with and without ASD. He also is the Principal Investigator for a federally-funded multisite Autism Center for Excellence, “Multimodal Developmental Neurogenetics of Females with ASD.” Dr. Pelphrey received his Ph.D. in Psychology from the University of North Carolina at Chapel Hill.

    Edlyn Peña, Ph.D.

    Dr. Edlyn Peña is a new public member of the IACC. She is an Assistant Professor of Higher Education Leadership at California Lutheran University (CLU) and is a parent of a child on the autism spectrum. Dr. Peña’s research focuses on social justice issues for ethnic/racial minorities and students with autism and other developmental disabilities in higher education. She earned her Ph.D. in Education with a concentration in Higher Education from the University of Southern California.

    Louis Reichardt, Ph.D.

    Dr. Louis Reichardt is a new member of the IACC. He is the Director of the Simons Foundation Autism Research Initiative (SFARI), whose goal is to improve the understanding, diagnosis, and treatment of ASD by funding innovative, high quality research. Prior to this, he was a Professor of Physiology and Biochemistry & Biophysics at the University of California, San Francisco, where he directed its neuroscience graduate program and Herbert W. Boyer Program in Biological Sciences. His research has focused on neurotrophins, a family of proteins that play a key role in brain development and function. Dr. Reichardt was a Fulbright scholar and earned his undergraduate degree from Harvard University and a Ph.D. in Biochemistry from Stanford University.

    Robert Ring, Ph.D.

    Dr. Robert Ring has served on the IACC as a public member since 2014. He is the Chief Science Officer (CSO) for Autism Speaks, the largest autism science and advocacy organization in the U.S. Dr. Ring is responsible for leading the science program at Autism Speaks, which features a diverse portfolio of research investments targeting medical research on the underlying biology of ASD, diagnosis, treatment, etiology, public health, and innovative technologies. Dr. Ring holds adjunct faculty appointments in the Department of Psychiatry at Mount Sinai School of Medicine (New York) and the Department of Pharmacology and Physiology at Drexel University College of Medicine (Philadelphia). He holds a Ph.D. in Molecular Neurobiology from City of Hope National Medical Center in Southern California.

    John Elder Robison

    Mr. John Elder Robison has served on the IACC as a public member since 2012. He is the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia, where he teaches courses on neurodiversity and living with autism. He is an autistic adult who is best known for working to increase public understanding of autism, and he is the author of several popular books about living life with autism, including Look Me in the Eye, My Life with Asperger’s, Be Different: Adventures of a Free-Range Aspergian, and Raising Cubby.

    Alison Singer, M.B.A.

    Ms. Alison Singer has served on the IACC as a public member since 2007. She is Co-Founder and President of the Autism Science Foundation, a not-for-profit organization launched in April 2009 to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. Ms. Singer is the mother of a daughter with autism and legal guardian of her adult brother with autism. Ms. Singer graduated magna cum laude from Yale University with a B.A. in Economics and has an M.B.A. from Harvard Business School.

    Julie Lounds Taylor, Ph.D.

    Dr. Julie Lounds Taylor is a new public member of the IACC. Dr. Taylor is an assistant professor of Pediatrics and Special Education at Vanderbilt University and an Investigator at the Vanderbilt Kennedy Center. Her research focuses on factors that promote a positive transition to adulthood for individuals with ASD and their families, as well as the impact of having a sibling with an intellectual or developmental disability. She has published research on a variety of autism and disability services-related issues, including sex and gender differences, peer victimization, transition planning, secondary education and vocational training, employment, and daily life skills for people on the autism spectrum. Dr. Taylor earned her Ph.D. in developmental psychology at the University of Notre Dame.


    The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as adults on the autism spectrum, parents and family members of individuals on the autism spectrum, advocates, researchers, providers, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit:


    You received this announcement because you attended a previous meeting of the IACC or joined the IACC mailing list. For more information on this meeting, or the IACC, please visit

    • Sullivan (Matt Carey) October 29, 2015 at 22:53 #

      For whatever it may be worth:

      David Amaral–excellent researcher.

      James Ball–head of ASA and returning member. Did well in the previous IACC.

      Samantha Crane–autistic adult, member of ASAN. I interacted with her on one occasion and she’s very professional and knowledgeable.

      Geraldine Dawson–returning member. Was chief science officer for Autism Speaks. Incredibly knowledgeable on current research.

      Amy Goodman–autistic adult. I do not know of her, but one friend of mine speaks highly of her.

      Shannon Haworth–I do not know of her.

      David Mandell–returning member to the IACC. One of the researchers who asks important questions in areas that are often neglected. Given the charter to work on transition to adulthood, Prof. Mandell will be an excellent person to have on the IACC.

      Brian Parnel–do not know of him.

      Kevin Pelphrey–excellent researcher.

      Edlyn Peña–I do not know of her. I do appreciate that there is someone on board to champion ethnic/racial issues (although this is a topic others, specifically David Mandell, have focused upon). In the previous IACC we had two parents who brought a level of ethnic/racial diversity and immigrant status, as well as one parent of a mixed-race child. While I welcome Ms. Peña, I feel we have lost some diverse representation. I’ll add, while we have now two women adult autistics, I would like to see some ethnic/racial diversity there as well.

      Louis Reichardt–I do not know if him specifically, but he directs SFARI. That is one of the best places to get good research information sumarized for a lay audience.

      Robert Ring–chief science officer for Autism Speaks. As one of the larger autism research funding orgs, Autism Speaks needs to be represented. Mr. Ring made a very clear statement about vaccines and autism which, while this should not be a litmus test, was a great step forward in clarity on the topic.

      John Elder Robison–returning member. Adult autistic. I very much enjoyed working with John and respect his approach. He’s pretty much fearless on topics and will bring forth his ideas–and highlight those of public commenters–in every meeting.

      Alison Singer–president of the Autism Science Foundation. Parent of an autistic child. Sibling of an autistic adult, for whom I believe she has responsibility. This latter part is something I believe strongly the IACC needs more of–people to represent autistic adults who can not effectively self-advocate in a forum such as the IACC. We bring multiple parents, especially of younger children, to the conversation but we rarely bring representatives of autistic adults. We had one more on the previous IACC (Sally Burton Hoyle). While self-advocate representation is a must, having someone on board who has the direct experience of representing an adult who can not represent him/her-self is vital and overlooked.

      Julie Lounds Taylor–I do not know of her, but her work is spot on for the current mission of the IACC.

      I truly wish they had included Paul Shattuck as his work on transition to adulthood and under-served groups is spot on target for the current mission.

  9. brian October 30, 2015 at 01:31 #

    Jake Crosby, MPH wrote that Thompson’s co-authors “chucked evidence for a vaccine-autism connection into the garbage according.”

    That’s either a bald-faced lie or, well, a remarkably stupid lie, given that Crosby knows that BS Hooker, years later, accessed the “evidence for a vaccine-autism connection” that Crosby alleges was destroyed. In fact, the dataset was made available to qualified researchers, as well as to Hooker, who wrote: “Cohort data were obtained directly as a “restricted access data set” from the Centers for Disease Control and Prevention (CDC) via a Data Use Agreement.”

    • Strawman October 30, 2015 at 02:32 #

      What is MPH? I am new here
      Jake are you on the spectrum? If not what is your interest in autism? Did your mother tell you that you were vaccine damaged? Are you a conspiracy theorists? Did they really land on the moon? I have a child with disabilities. I want him to have all the opportunities that most people have. That means time and money not spent on this bs
      The CDC and the government is made up of people like you.

      • MI Dawn October 30, 2015 at 14:15 #

        @Strawman: MPH is Master’s in Public Health, which Jake somehow managed to acquire. He is on the spectrum and yes, reportedly his mother *did* tell him he was “vaccine-damaged”. He strongly believes in any conspiracy you can name, and will happily bad-mouth those who once used him as their puppet (see his own blog and his columns on AOA).

      • Strawman October 31, 2015 at 01:01 #

        Jake, you are not damaged
        I see you as successful with a Masters degree and writing ability
        I would hope that you should use your talents for a better purpose
        Help the young people who are already he
        They need activities and job coaches.

        . You could help lead this

      • Strawman November 1, 2015 at 06:07 #

        Jake you and many others have been brainwashed by all vaccine

  10. Strawman November 1, 2015 at 06:19 #

    Jake, you don’t want me to feel sorry for you. Do you
    Don’t fall for what these people are saying about vaccines. That Autism One and Safe Minds only hurt the autism cause. And that AoA talking about the same things over and over again.

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