Dachel Interview: Dr. Paul Thomas
Revolution for Truth March 31, Washington DC

Katie Wright: Public No Longer Invited to Speak at IACC Autism Meetings

SilencedBy Katie Wright

No matter who you voted for in the last last election the take away message was unambiguous. Americans literally do not feel heard by our government. So guess what the new IACC Director just decided to do? In an incredibly ironic, tone deaf and boneheaded move, Dr. Joshua Gordon decided to take away the people’s right to speak at IACC public comment. That’s right. So for to those Americans affected by autism who do not feel heard or that the federal government doesn’t care about your kid - you’re not crazy. The federal government really, really does not want to hear from you.

To be specific Dr. Gordon decided to limit stakeholders to one public comment a year. That’s it. This move is foolish and unfair for many reasons. Number one, it only serves to reinforce the belief that IACC is completely uninterested in your family and your autism organization. As it stands, NIH leaders refuse, absolutely refuse, to appoint IACC nominees who truly represent actual large national autism interest groups (TACA, NAA...). Instead the NIH gives those few public IACC seats to members of an Aspergers comedy troupe, assistant-assistant professors (who are not ASD parents) of small colleges no one knows, numerous random people representing no organization at all who rarely show up and finally, masquerading as members of the “public,” NIH employees who are ASD parents but never say a word. The only chance large national groups have to be heard is during the brief public comment period.

There are no seats at IACC for those with severe autism. Indeed, severely affected children like mine cannot speak and require 24/7 care. Arranging time off work or paying the extra care taking required for a severely affected ASD child so a parent can travel (on their own dime) to an IACC meeting is a herculean task. Therefore, autism families rely on our leaders to speak for our children in D.C. and at IACC. It is bad enough that the NIH refuses to give public seats to NAA or TACA or SafeMinds but now they limited our tens of thousands of ASD families to no more than 2 minutes of representation a year? SafeMinds has members all over the country but few can travel. Lisa Wiederlight, our president, is our designated IACC speaker in part because she resides in Maryland. We have complete confidence in Ms. Wiederlight’s expertise on both the science and service issues important to our members. We do not want Lisa limited to speaking about our issues once a year. TACA is located in California. It’s virtually impossible for various CA ASD Moms and Dads to appear in person at IACC. However, they can help subsidize a trip for the organization president to speak more than once if members deem this necessary. One of the most moving IACC speakers I have ever heard is NAA president Wendy Fournier. NAA members want Ms. Founier is able to communicate their needs whenever necessary. Yet Wendy should be limited to 1 two minute slot a year?

Listen, I know that not all public commenters are brilliant and enlightening. I’ve sat through some head scratchers, I get it. They can't all be winners, but that is OK. Believe me, autism families have sat through hundreds of hours of useless IACC talk. The very least IACC can do is welcome ASD community members who make the trip to for the opportunity to be heard, however briefly. Sure, if IACC members were working for IBM they would not have to sit through live public criticisms of their job performance. No, instead almost all of them would have been fired years ago due to poor work performance. Just imagine this group having to be accountable to a private sector employer! Given the fact that IACC’s performance and the NIH autism team have succeeded in alienating and angering most of the it’s constituents, all federal IACC members would be unemployed.

This inane restriction is the responsibility of Dr. Gordon and the IACC panel. Dr. Susan Daniels and her team does an excellent job organizing all meetings and making materials accessible to the public. A detailed agenda for every meetings and bios for every presenter is available in advance of everymeeting and all earlier IACC meetings are well archived and available to all who wish to view them. The operations aspect of IACC is well functioning and transparent. The problem is the leadership. It is not Dr. Daniels’ responsibility to limit speaker’s times, it is Dr.Gordon’s. Rather than waving his hands and saying, “it’s just too hard to keep public speakers to the allotted time limit,” Gordon needs to do his job and make it clear to commenters that their speech will be stopped, politely, but firmly, stopped after two minutes. It is called running meeting and it is the chair’s job.

Let’s talk about what was so very important at the most recent IACC meetings necessitating the truncation of the public comment period. First we heard from Autism Speaks’ President Angela Geiger. Ms. Geiger has been the CEO for one year but has kept a very low profile, I suppose because of the dormant nature of AS Science. Incredibly, it has taken Ms. Geiger 11 months to settle upon a Chief Scientific Officer! I realize AS was burned by the previous CSO, Dr. Rob Ring. Ring was promoted from within AS without even a cursory search effort and this was a gigantic mistake. Dr. Ring was temperamentally and professionally ill-suited for this critically important job and the organization suffered terribly during his tenure. Ok, so don’t hire someone right away but should it take 11 months to find a qualified candidate? Would such paralytic leadership be tolerated in the private sector, absolutely not.

Ms. Geiger spoke for about 15 minutes about AS’ direction. AS intends to focus more young adult and adult issues, which was great to hear. However, few specifics were given. AS wants to decrease the age of diagnosis. We’ve been hearing about that for 13 years, but fine. Geiger spoke about AS supporting “cutting edge science,” absolutely no details. More talk about “journeys, transformations, growth, change, evolving, access to solutions, improving transitioning, partnering, negotiating solutions, having open arms.....” you get the picture. Oh, and I don’t believe I am alone in not wanting hear one more promise about “personalized medicine” EVER.

Autism families are so tired of meaningless empty promises, time to get down to earth and be specific. Ms. Geiger offered dozens and dozens of euphemisms for change but after a year in the wilderness AS leadership needs to get very specific with families about the science it intends to support.

A few IACC members asked about the supposed “scientific breakthroughs” in the AS pipeline. Ms. Geiger replied that she is “not a scientist.” Ms. Geiger that is not an acceptable answer. You are an extremely high paid CEO who has had one year to educate yourself, full time, on autism science- time to be an expert. Come on, no excuses. Do you think all autism moms and dads went to medical school? No, we stayed awake night after night to read medical journals, environmental science studies, GI research, books about auto-inflammatory disease, study after study on nutrition. And you know what else? We did this while caring for ASD kids and/or having a job outside of the home. Ms. Geiger time to get busy and hit the books like the rest of us, but do not limit yourself to the stagnant and dated “genes + behavior” CDC /NIH science like the rest of AS Science has. You must read widely on toxicology, metabolic science, the micro biome, PANDAS, gut permeability, autoimmune disease, etc...to really understand autism science and to, most importantly, offer people suffering with autism the real help they need and deserve. Read Herbert, Deth, Jyounchi, Hertz-Picciotto, Krisgman, Van Der Water, Usman, Rossignol, J. Adams, Exley, Tomljenovic, Nevison, Dhurjati, Marabotti, Mezzelani, Mustafa.

The second and more lengthy presentation ( one hour!) was given by Dr. Sam Odom of UNC, regarding ABA teaching modules. I am sure Dr. Odom is a smart and dedicated researcher but his presentation was interminable and taught us nothing new. Odom leads a multi-million dollar NIH project geared towards educating child care workers about autism teaching techniques. The presentation about the basics of ABA should have been condensed into 10 minutes. The remaining 50 minutes should have been dedicated to public comment or a speaker with relevant and NOVEL science to share.

Dr. Gordon you need to know that IACC public commenters are tax payers, citizens and your equal in every way. Dr. Gordon you do not have the right to tell the autism community that their leaders can speak only once a year. It was horrible, but not surprising given the largely unrepresentative membership of IACC, that not one IACC member spoke up against this undemocratic ruling. Dr. James Battey, who has taken up space on the committee for 10 years and contributed almost nothing said that he did not like the repetitiveness of public comments because “we are smart people and remember things.” No, Dr. Battey the committee does not seem to remember anything the members of the public asks you to do- whether it be fund biomedical treatment research or meaningful environmental science. Dr. Battey you and your colleagues suddenly have amnesia whenever it is time to write your Strategic Plan - which reflects academia’s needs and wants not the autism families you should be serving.

Believe me Dr. Gordon and Dr. Battey, public comment is the very least of IACC’s problems. Instead of limiting the number the of comments the public may make I advise you to welcome all and take copious notes throughout in order to create better Strategic Plans.

Katie Wright is Contributing Editor to Age of Autism.

Comments

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Benedetta

The link that John Stone put up:
1 out of 100 in the general population means the adult population.
In children there are more epilepsy -1 out of 20.
This is sure enough epilepsy and not febrile seizures -- They are not counting febrile seizures.

Sooooo, let me go back to my families personal past - some 30 years ago.
My son had a vaccine reaction.
My son had two seizures that year -that were connected with fever. So, they were febrile seizures. Except the peds put him on seizure medicine when an EEG showed he had seizure activity when he fell asleep.

They said to not worry about it cause he will out grow them.

Did not happen.
IF these kids have epilepsy when young they are not going to out grow them.
THe question remains to be seen; will the adult population that is now 1 out of 100 remain so, or will the near future adult populations change to 1 out of 20.

What do you guys think? Predict? Bet on?

Patience (Eileen Nicole) Simon

John Stone, Thank you for your comments here.

My son was 5 years old in 1967, and he was dismissed from public school kindergarten. I was told they could not accept children who could not speak. In 2005 I took a job as a teacher's aid in our local middle school (ages 11-13), because I wanted to see for myself who was in special ed. The resource room was full of autistic children. In 1967 I would have known if so many children like my son lived in our neighborhood. How can members of the IACC miss seeing this increase in prevalence?

I suggested to President Trump that a new IACC be formed to focus exclusively on causes of increasing numbers of severely disabled autistic children. I will now try to contact our new head of Health and Human Services (HHS).

The remark "We are smart, we know the comments submitted over and over," was pointedly unkind. He should be dismissed immediately from the IACC. One of my younger sons has been helping me hone my ideas into many short focused comments, and he told me I am purposely being ignored. I hope we will soon have a new IACC more respectful of parents and our concerns.

John Stone

John

You undoubtedly mean well but even the CDC cannot disguise the fact that autism rates are spiralling out of control - but they give a little information and they delay it for years. In the UK you can monitor the autism rate through schools data. I have been trying to highlight the situation in Scotland where in September last the rate was 1 in 51 (rising year on year since records began in 1998) but seven years before it was recorded at 1 in 129 so the level is actually much higher than 1 in 51 among younger children, and even then not all of the younger cases will have a diagnosis yet (this only records those that have). Indeed, if the issue ever gets highlighted in the mainstream it is the lack of resources to make the diagnosis, and give support - it never lights on the real problem which is the ever increasing swell of cases (in England we are a little less than three years behind). When I have tried to highlight this my articles have been removed from google news, but I have certainly not made the figures up. And I firmly believe we are looking at a similar situation in the United States.

But the real point is that in any normal medical context this unexplained and potentially catastrophic event would be exercising every doctor, every medical scientist and anyone to do with health policy - but in fact we see no urgency and no interest. It has to be said that this is much more important than a few cases of measles hyped beyond the point of hysteria by the main stream media, but it cannot even get on the agenda of your committee. Frankly if I were you I would go with the blunt perception of your president that vaccines cause autism: he may not have studied the issue with the same thoroughness as Bernie Rimland once did but it is a strong working hypothesis.

Also you mention epilepsy - I was also horrified by a notice on the website of Seattle Children's Hospital where the rate of epilepsy in children is stated to be 1 in 20, as against 1 in 100 in the general population.

http://www.seattlechildrens.org/medical-conditions/brain-nervous-system-mental-conditions/epilepsy/

What the hell is going on? That is serious news except for the people who control it.

Linda1

John Elder Robison,

You asked what can be done differently. First, study the modalities used by the children who have recovered - and study those cases - carefully. There are many and their parents - and their doctors - would love to share what they know but so far there has been no official interest. Second, intensively study the actual regression cases. Third, demand that Congress call William Thompson for formal hearings to investigate his allegation backed by thousands of documents of CDC fraud with regard to autism vaccine research going back almost 2 decades. Fourth, invite Dr. Wakefield to attend a meeting and respectfully listen to what he has to say. Fifth, rid the IAAC committee members of all that have a COI and those who do not belong there because they have no expertise and/or nothing to offer to solve the problem.

That's for starters.

Introvert

John -- part of the problem for many is that while a child is diagnosed as intellectually disabled, that is only because current tests can't measure the intelligence of a child who is dyspraxic and apraxic, and can't motor plan a response -- can't accurately point or choose. See what brilliant and severely autistic author Ido Kerdar
says here about "Not Speaking is Not the Same as Not Thinking " and "Body Mind Disconnect."
http://idoinautismland.com/?p=376
Many of us are discovering our children have perfectly normal intelligence when we pursue teaching methodologies like rpm. Imagine the frustration and despair of a child locked into their own body, especially when you add chronic pain -- gut pain, headaches -- into the picture. Many of these children live miserable lives. We know they are in pain, and tell their doctors, but we are ignored because it is "just autism". The Down Syndrome kids in my daughter's classroom are happy kids, but her life is frequently a nightmare.
What specifically do you want us to do? So much! There are so many interventions that parents are trying that are having an effect, but are not being studied You only have to listen. Invite a TACA member onto your board, and listen.

John Elder Robison

Aimee, from what you write it sounds like you are in Rockville. If so why don't you stop by IACC and introduce yourself ?

As for what I said there is a. It of misunderstanding. I asked about acceptance but I did not mean to imply that I was saying You should be accepting. I was just asking why and you did answer

You mention perceived un happiness in kids with severe autism as compared to kids with, say, Downs. You also mention the fact that one group of kids was born with a disability whereas you feel some of the autism kids acquired their disability and you attribute the mechanism to vaccines

Since you feel these kids are injured it seems logical to you that cure should be the goal. In contrast a kid who was born a certain way would be accepted but even then we would strive for maximum quality of life

But there question then is what specifically would you do? Right now we have many ongoing studies aimed at - for example - epilepsy or anxiety in Autistic people. How would your belief in vaccine causation change those studies?

I did not mean to imply in my earlier post that we should just accept cognitive disability. What I meant to express is that there is no relief on the horizon in the form of promising studies. I'm not saying we should not have hope, just that there is little progress in that area today whereas there are other areas where there is progress

How would you change that given the current knowledge?

It's a difficult and frustrating situation

You say those of us on the committee are blasé in the face of skyrocketing autism rates. In my case I don't feel that's true. I try and make the best decisions and recommendations I can given what I have to work with at each committee meeting. I don't have any feeling of blasé whatsoever

The fact is this is a hard problem to solve. Whatever you believe the cause to be the problems to be solved remain the same and they are before us. That's why I urge people to join together in pursuit of a shared goal

Aimee Doyle

@John

Well, one final comment. : - ) Thanks for engaging with me.

You're certainly right about the glacial pace! The nonpublic members on the committee do seem pretty blase. They talk and talk while the autism rate skyrockets. I really don't know how they live with themselves. I'm not so sure that speaking out, though, has produced much action and certainly nothing in the way of results from the IACC. Not one new treatment or therapy since the IACC was initiated. And outside the IACC, how long has AoA been talking about vaccine damage? If anything the pro-vax movement is even more entrenched.

You're also right that there's a lot we can agree on. I agree that it's important to fix seizures, gastrointestinal issues, sleep problems. Those do improve quality of life for individuals and families. I fully support that research. I also agree on the importance of appropriate supports and services; however, in my time as an attorney, advocate, and parent - I have consistently seen the best services and most effective supports go to the top 10% of the spectrum. When I have spoken out against this I have been told (in various ways) that it's important to support those with "potential." There is a tendency for those adults who are lower-functioning to get stuffed into group homes and be overmedicated so that they are compliant. I've seen it happen. The imbalance is true in education as well. The Model Asperger program at my son's private school (specifically for kids with autism and communication disorders) received the lion's share of the funding, educational energy, and programmatic supports. The autism program at that school, not so much.

You asked a philosophical question about why parents like me cannot accept intellectual limitations and why we might see those limitations as different in autism. My answer is that the cognitive impairments I've seen in Down Syndrome, and generalized intellectual disability - are usually not accompanied by the social deficits, or the kinds of self-injurious and aggressive behaviors I've seen in autism. Most kids at the severe end of the autism spectrum don't seem to be happy.

We part ways when you suggest I be a realist about the fact that there's no research in the pipeline geared toward ameliorating major cognitive impairment so I should just accept things as they are and work toward quality of life. I will not accept that! I am a realist, but I don't think that's a reason to abandon the idea of cure or significant improvement. We certainly won't find a cure unless we (a) hold the vision that one is possible, and (b) work to realize that vision. I believe in holding that vision and I am distraught that work toward cure seems to have almost disappeared. The "day" won't come if we don't try. Some kids do recover from autism - we need to figure out how and why that happens, just as we need to figure out exactly what happens when kids like my son regress into autism. Research on cure - for those who want a cure - can and should certainly move forward in parallel with research on resolving medical issues, and funding for supports and services.

So, no, I can't accept that because of vaccines, my son has been robbed of the life that could have been his and of the talent and joy he could have brought to the world. He did not graduate from high school and will never go to college. Barring major breakthroughs in research, he will never hold a paying job, live independently, have friends (everyone in his life is either family or paid to be there), kiss a girl, get married, have children of his own. He will never blog or be asked to advocate for others with autism - we applied once for a position on a disability council for him (my husband was going to assist). We never heard back. I've seen enough group homes to shudder at the thought that they are likely his future.

Patience (Eileen Nicole) Simon

John Elder Robison, Thanks for ongoing participation on AoA.

Intellectual disability is not "accepted" by most parents. Life changes forever for families who find themselves with a son or daughter who does not develop normally. The rest of the world wants to force you to be accepting, but the rest of the world is not accepting of families dealing with a disabled child. You won't understand this until it becomes your burden.

The Combating Autism Act and IACC were intended to determine reasons for increasing prevalence of autism beginning around 1990. It is discouraging to see "official" efforts become more and more watered down.

I was slammed with the problem of autism 50+ years ago. For me that has had to be the focus of all my energy, and I resent people who try to goody-goody me into "acceptance." I will continue to try to be heard. Parents who contribute to AoA are not going to accept "the science is clear" put-downs either. That is why I read and contribute to this blog. Warriors? Yes we are.

John Elder Robison

Aimee, when you speak of Lyn's frustration remember all of us who speak out on the committee feel exactly the same. We are all frustrated at the glacial pace of government activity. It's not like Lyn was ignored and I saw my own suggestions implemented one-two-three. I get the same sense, but I think speaking out eventually produces action and that was true for her too, in my opinion.

I'm well aware there is nothing good about disabilities like your son lives with, and I wish we knew how to fix cognitive impairments. But we don't, at least for now. I think there is a better chance of fixing the epilepsy, some gut issues, sleep problems and helping with anxiety and depression. Those are big deals.

Yet I know that's not the answer you want.

May I ask a philosophical question for some of you? Parents of kids with intellectual disability do not seem to speak out so strongly for "cure" of those cognitive limitations. They seem to accept them as unchanging, and something that just is.

Why is cognitive impairment in autism different, in how you see it?

When I say I don't see a lot of promise for fixing major cognitive impairment I am not being a pessimist. Rather I am being realistic, based on what research is in the pipeline. That is one reason I say we should band together to focus on quality of life issues, ones that help people "just as they are" to the extent possible. One day we may be able to do more, but until that day comes, we should be making life as safe and comfortable as possible and we have a particular duty to those who cannot advocate for themselves in that regard.

Aimee Doyle

@ John Robison

Thanks again for responding to my comments. I appreciate your willingness to have a dialogue.

You're right the Lyn Redwood was on the IACC for a long period of time. But I also know she was frustrated because her concerns were not taken seriously and she was unable to impact the direction of research. You said again parents like me should nominate someone to the committee who shares our views. I'll say again, we've tried and been blocked. Since Lyn, I don't think there has been anyone on the IACC who understands or is even willing to consider the vaccine-autism connection,

Regarding vaccines and autism, all I can say is I've lived it. My son developed seizures after the DPT, lost eye contact and smiling after the first MMR, lost language and developed autistic behaviors after the second MMR, and became self-injurious and aggressive after Hep B. Somewhere in there he developed gastrointestinal issues as well. Even if his medical issues were resolved, his autism would remain. For him autism is not a gift and it is most certainly not just a "neurological difference" - there is a difference between "difference" and disability. My son's autism leaves him cognitively impaired, motor impaired, language-impaired, and socially-impaired, and with crippling anxiety...in other words, profoundly disabled.

I can certainly agree that for some individuals with Asperger's their autism is a difference and a gift. I respect that you experience that side of it. I just wish there more recognition - and discussion - of how difficult severe autism can be for families - and for the individuals who experience it.

Patience (Eileen Nicole) Simon

John Elder Robison, Again thanks. Thanks also for responding to my tweet. I signed up for Twitter many years ago when Dr. Insel told us the IACC would use Twitter. I never used it, but will now explore its possibilities especially because President Trump uses it.

Glad to hear Twitter comments can be seen by anyone. Being heard has been my goal for decades. I wish I knew how to find a publisher (or agent) to publish my 6 books, and the one I am almost ready to try to publish. History? This is a huge field, and books published by journalists do not cover the history of neurology or obstetrics (midwifery). I am belatedly participating in writers' workshops to learn better how to express myself.

Meanwhile, my website conradsimon.org has been out there for almost 17 years. My viewpoint in April 2000 remains the same, and is the basis of my first book (eBook). I added more, about Wernicke's Encephalopathy (published 136 years ago) and childbirth practices in 2003.

I do believe I have some ideas worth discussing, including BRAIN CIRCUITS (the new buzz word), which back in 1990 I tried to explain in terms of signal gating and multiplexing. In Google my paper on this comes up with keywords: autism Wernicke.

John Elder Robison

For all of you commenting on IACC. The public side of our group is made up of volunteers and in the case of community representatives like me no employer pays us to be there

For that reason it is hard to ask the committee members to spend more time in a world where time is already short

Congress authorized IACC but they did not see fit to authorize specific funding so we are in a sense dependent on the goodwill of NIH for our operations

What I see here makes me think it would really mean a lot to you if we could get considered answers to your concerns from NIH staff and the absence of such response drives some of you to comment over and over in hopes of an answer.

I think it is worth raising the issue at our. Ext meeting. Dr Gordon made the one comment per year rule in hopes of managing the repeat comments but perhaps a better answer would be to respond to them instead.

The problem is I can propose it but in effect I'm asking others at NIH to devote more effort to something that is already unfunded and none of their present duties are set aside. Still it's worth discussing because I've come to see you deserve answers from the scientists we rely on at the agency. It's not my role to answer people like Eileen but it is my role to speak for addressing her concerns

John Elder Robison

Eileen I know you have been tireless in presenting aspects of your cord cutting and oxygen deprivation propositions. I think the risks are obvious and your mechanism may well be a path to injury for some.

I've never delivered babies so I can't comment on how your concerns square with the actuality of current delivery procedures. While there are MDs on IACC I can't think of a one of them who delivers babies today. What I wish is that we had funding to give every question like yours a medically qualified answer which in your case would come from someone with expertise in delivery procedures today.

I'm going to try and raise that issue at the next meeting and perhaps you can remind me. If we could get staff to answer comments I think it would mean a lot to commenters and the responses might then be better positioned for discussion and study

I look forward to seeing you there

Patience (Eileen Nicole) Simon

John Elder Robison, Thank you again for responding on AoA. I may plan to attend the next IACC meeting. Yes, I submit the same comments over and over, and the remark about remembering the comments submitted repeatedly was infuriating. I would not keep sending the same comments if they could be discussed.

One of my sons (who works as an editor) has been helping me with keeping my comments as brief as possible, and lately I have been sending short comments, but several in each submission.

My focus is THE BRAIN, which clearly is affected in a similar way by all of autism's myriad causes. But too many members of the IACC do not want to consider brain damage. I will continue to try to be heard. I have written 6 eBooks, available on amazon.com, and a few papers and letters in the medical literature. I have been going to IACC (or NIMH) meetings since 2003. It is discouraging when members of the committee yarn on and on about non-issues, and continue to demean parents as mere carriers of "autism traits."

John Elder Robison

Aimee, I think Lyn Redwood shared your views on vaccine and I must say I always enjoyed our time together even as our views differed at times. She was a member many years.

The thing I learned from her and others is that we don't have to agree on everything to recognize we need to join together to fight for the most critical issues which are quality of life for your son my son me and everyone else who lives with autism

I would welcome Lyn back any time and I was serious in my suggestion to name other people if you don't like the current composition

When parents like you say I am anti cure I often think we argue about semantics and indeed we want many of the same things. As a neurological difference I don't think autism is subject to cure in a person like me or your son. But do I wish we could cure the seizures that kill so many of us? Of course. Do I wish we could relieve the many kinds of genuine suffering? Of course I support that too

Where we perhaps differ is that I see a side of autism where some of us are blessed with gifts that offset some of our disabilities. It's those I want to preserve and I hope you can respect that just as I hope we can do everything possible to resolve the medical issues for so many of us.

Aimee Doyle

@ JohnRobison

I appreciate your responding to my comments and clarifying your positions. I hope that you continue to push to reopen the public comments. And I hope that you work to give Eileen Simon a chance to have her comments not only read but thoroughly discussed. She has been tireless in her advocacy and almost totally ignored.

However, you also said that "If your issue is that you don't like the particular parents chosen for the committee, my advice then is to nominate other parents that you think would serve the community better."

From my time observing the IACC it seems that all the autistic adults on the committee are opposed to the autism-vaccine connection and opposed to finding a cure for autism. For that matter,the IACC parents of the severely impaired kids also seem to promote those viewpoints. I don't get it, but they have a right to that viewpoint. It shouldn't be the only viewpoint represented, though.
Many, many parents want prevention, cure, or at the very least effective treatment and therapy for their affected children and disabled young adults. You say that I (or parents like me) should nominate public members who represent our views. We have tried and have not been very successful in doing so...in fact, attempts to make the IACC more representative by including individuals from groups like NAA, TACA and Safeminds have been blocked. Any thoughts on how to change that?

The IACC has been in existence since 2004. The autism rate has skyrocketed. During that time not one new treatment or therapy for autism has been discovered. Research into cure has vanished. Taxpayer money has been wasted. The meetings ramble on and on, the years pass.

If I sound frustrated, it's because I don't see anything the IACC has done or will do anything that will help my son or those like him. He's 28 years old, profoundly impaired, and will need lifelong care and support 24/7. I want so much more for him.

John Elder Robison

To speak to a few comments directed to me:

Aimee, you wrote:

"Have you spoken to Dr. Gordon and the other members of the IACC about how wrong it is to stifle public comment like this? If so,what did they say?"

We had a discussion of how to manage comments, which were taking a lot of time and were often duplicative from one meeting to the next. Dr. Gordon is new to the committee and he made a different choice than I would have in this case, but his views will probably evolve as he gets more familiar in his new role.


"Have you encouraged the IACC to include on the committee parents who have severely impaired children and young adults? If not, why not?"

There is no need for me to encourage IACC to do this. IACC has always had parents of kids with significant challenges on the committee. Right now we have Alison Singer and others. The change is including autistic adults. We are what's new to the committee, not the parents.

If your issue is that you don't like the particular parents chosen for the committee, my advice then is to nominate other parents that you think would serve the community better.

Now, to answer Ms. Simon . . . No I did not discuss your comments with Dr. Gordon at the last IACC. I was completely absent from that meeting - an unusual thing for me - and so I took no part. If you want to write me prior to the next IACC I will bring your concerns to his attention, and if you come in person (as you often do) I will make an introduction.

Aimee, you also wrote: "And isn't John Elder Robison on the IACC? I thought he was sympathetic to the concerns of autism parents. Why didn't he speak up about the removal of the public comment opportunity? And if he really does care, why doesn't he use his influence with other members of the neurodiversity movement?"

I am concerned with the issues of parents. Other parents often forget that I too am a parent of an autistic child, so I am one myself. I addressed the public comment in my answer above and will revisit it once Dr. Gordon is more settled in. If I may, I'd point out that I am a consistent voice for the reading of stakeholder comments at IACC and the record shows me to be a consistent supporter of that even when the views expressed are at odds with my own.

As for "using my influence with the neurodiversity community" . . . I express my views in the committee, and I challenge anyone where appropriate. If you watch what I speak up for I certainly push for supports and work to help autistics with more severe challenges. I also push for more acceptance and accommodation. I'm not sure what you are asking of me in this comment but you are welcome to tweet directly to me during meetings if you have specific examples next time.

I will continue to do my best to ensure everyone has a voice. As I said to Aimee, feel free to tweet directly to me in meetings if there are points of question or concern.

L  Land

This is wrong. But what is the effect going to be really? They were not listening anyway. They are not ever going to do anything worthwhile ever.

Aimee Doyle

@John Elder Robison

"I take my responsibility as an appointed member of our community seriously and I do my best to speak in support of all people on the spectrum, not just my own."

Have you spoken to Dr. Gordon and the other members of the IACC about how wrong it is to stifle public comment like this? If so,what did they say?

Have you encouraged the IACC to include on the committee parents who have severely impaired children and young adults? If not, why not?

Parents can speak up for their profoundly disabled children much better than someone with Asperger's can. I would not presume to speak for you, and I don't see how those with Asperger's and HFA can presume to speak for those who cannot speak.

Patience (Eileen Nicole) Simon

John Robison, Thank you for reading and contributing to AoA.

I hope you might take a few minutes to peruse comments I submitted for the IACC meeting in January: New chairman, causes of autism, brain circuits, brain damage, male vulnerability, how it feels, diagnosis, drugs in the brain, blood flow in the brain, asphyxia at birth, who am I?, coming to NIMH, comments to President Trump, lifespan outlook, community care, who cares?, learning differences, and placental blood flow.

I asked for discussion of my comments, not just to be included in a summary of public comments. Inclusion in a summary of comments was all I got. Can I ask you to comment here on AoA on at least one of the comments I submitted? What can I do to have my ideas discussed by members of the IACC?

Denise Anderstrom Douglass

Thank you, as always, Katie Wright. I am putting my faith (floating without a tether of hope for a long time now) in the news of R.F.K., Jr heading an inquiry for President Trump. These lazy, immoral, suckling pigs on the government teat, who call themselves scientists are frigging scared to death of us now. Yes, we the people, the ignorant, unwashed VICTIMS of their lies and rules, and regulations -- have done all the grunt work and understand the science that they have buried with their claims of crackpot, tinfoil hat conspiracy theories! I call bullshit witchyouguys, as we say in New England.

Katie Wright

Thank you for all the comments. The readers asked a lot of great questions. I will attempt to answer:

1) I have NO idea why Rob Ring is still on IACC. My guess is that he has NOTHING else to do. After suddenly being asked to leave/ "moving on from AS" Ring has yet to secure a job in the field. Ring has no relationship with the ASD community. Anyone with a shred of integrity would have given up the seat. Instead Ring trumpets his "IACC appointment" all over his resume, LINKin etc....Very sad

2) John Elder Robison is actually a terrific IACC member. He may be very HF but at least John is open minded and tries to understand this eon the other side of the spectrum. John is also wonderful at calling out govt. bureaucrats who are not doing what they promised.

3) It is true IACC members are rarely swayed by public comments but they do not have the right to limit our free speech. The fact that these federal members are so disinterested in the life and death problems affecting the ASD community speaks for itself. It is good to have their disinterest on record for referral next time you speak with your representative.


4) Yes, Autism Speaks website is apparently a skeleton operation now. AS no longer has any interest in even pretending to hear your comments. AS Science barely exists. AS barley raises $ anymore and have alienated the vast majority of early supporters due to their, frankly, foolish and self serving (giving grants to friends and own labs) science grants. And yes, so embarrassing, but AS has appointed 3 of the current IACC reps - yet ALL abandoned AS and yet retain seats.

5) Dr. Gordon does appear to be be completely clueless. I am guessing he has yet to watch one IACC prior to taking on the leadership of the committee. His leadership is horrendous. Soon he will realize that "learn the signs" and "early intervention IS good" are pathetic research goals in 2017. The man could not set the bar lower.

6) As awful last it is IACC serves an important purpose. IACC is the perfect example of all that is wrong with govt autism research. Congresspeople and Senators are angered by their pathetic performance and welcome your opinions about the NIH autism research response. Don't be shy! Let them know what you think.

John Robison

Hi Katie,

I'm not sure if I am one of the Asperger people you are critical of in this essay but I hope you know that I consistently support the idea that any American who wishes to travel to IACC to speak deserves voice. Even if I don't agree I recognize every member of our community has a right to be heard.

One of your commenters made the comment that certain people "don't speak for her child". I don't know her or her child but be assured that I take my responsibility as an appointed member of our community seriously and I do my best to speak in support of all people on the spectrum, not just my own. Furthermore I encourage all people to comment or volunteer for service whatever their views.

I believe you know that you can always write me on issues and I am generally there to speak out. Last meeting was an anomaly with me being absent.

go Trump

Thanks for all you do Katie, I would assume that more than a few from the Autism community have access to the White House in fairly short order.

I would assume the President would like to have a number of items in place before taking the proper action with the CDC / NIH and all the medical dimwits who have trashed well over a million American children.

I would suppose a proper presentation would be in order to highlight the 25 years of endless vaccine fraud.

We have a “number with movie making skills” that I a sure would help the President with a 10 – 20 minute live / Prime Time Autism presentation to the American people.

Perhaps those who "sit on a bus for hours & hours" could organize a few items.

no-vac

NIMH being in charge of IACC is like fox guarding a hen house. NIMH is totally sold to pharmaceutical mafias, they will never investigate and admit the role of vaccines in autism epidemics.

annie

I guarantee Senator Warren that Black-American parents care just as much about what is being injected into their baby boys, if not more, as they about their right to vote.

Nonnymouse

Today the only comment to be made about the IACC is this:

"She was warned. She was given an explanation. Nevertheless, she persisted.”

Wendy Fournier

IACC members are rarely swayed by public comment. We had a mom talking about her child who died after a wandering incident and I watched a committee member eat his lunch and play with his phone during her heartbreaking comments. He didn't even look at her.

Autism is a national crisis facing millions of individuals and their families. The best we can do to address that crisis is a federal committee that meets 4 days a year? What about the other 361 days? The committee members all have their own full-time careers to focus on - how invested in IACC can they possibly be? We need an entire institute staffed by people - including stakeholders - whose only job is working on addressing the needs of this community every single day.

Jill in MI

I guess that Dr. Gordon just wants all these annoying and time-wasting autism families to "go away." Thanks Katie for not "going away." His head is in the sand - where exactly does he think families will actually get help? How can he possibly think he is doing his job? I agree, in the private sector he would be fired. What do these people make in one year for not doing their jobs? How do they set up such non performance? Do they get together before the meeting and plan how to smoothly talk about nothing, cleverly timing it so that they completely cover the allotted time they graciously meet? It is sad that this committee could have really made a difference. Do any of them have connections to Big Pharma? It's all just noise and talking in circles. Nothing gets done. Frustrating! Frustrating! Frustrating!

Reader

Seems to be the MO of the day. Censor comments, don't even provide comment sections...they are losing though, in spite of this.

Susan

I hope there's a way President Trump can disband that group.

Jake Crosby

And right after Trump's inauguration, what a surprise.

At least it'll save us a lot of time.

George stevens

The rumor floacting around today is the cdc has been ordered to remove all vaccine info from their website by February 18th by Trump. Lord let it be true.

Benedetta

Bill;
They archived their meetings and you can watch them on the u tubes.

Never will you see such beautiful, choreographed, coordinated dancing around the real issues, They are perfect at their true job of stalling. .

Benedetta

Is - Is- Is - perhaps - the IACC days are numbered?

Meanwhile I am putting Gordon on my evil doer list. IT is getting kind of long and growing.

Shannon Strayhorn

Just in response to the redacted words. I submitted testimony that was without profanity but it sure reads in record differently. I can't speak for the above comment but mine was not inappropriate. They redacted "ridiculous". While clearly not a ringing endorsement of this committee and their inaction, it was also not something that needed to be removed.

Greg

Further, in addition to my earlier post where I pointed out commenter John Best' recommendation that the committee copulate with itself, a recommendation that I am sure many here agree with, others also criticized the committe for blocking the SafeMinds Director from partcipating in upcomming meetings, and also for not encouraging that Thompson be investigated.

 ciaparker

Could someone draw this situation to Trump's attention? Maybe Dr. Wakefield?

Berta and Larry Hammerstein

Thank you. Katie, for still being there and going on. The worse it gets, the more important you are. We, the 80-year-old grandparents of a 32-year-old grandson with autism now in our care, need you more than ever. It's a scary time.

Aimee Doyle

How about holding the neurodiversity movement to account here? They seem to be the primary voice for autism -on the IACC and elsewhere - and they certainly don't speak for my son, who is profoundly impaired. In fact, I've never known anyone who was higher-functioning who was actually willing to spend time with my son. It's all "supports and services" - which are good,but I've noticed in my son's five years post-school, that the best services and most effective supports tend to go to the top 10% of the spectrum.

And isn't John Elder Robison on the IACC? I thought he was sympathetic to the concerns of autism parents. Why didn't he speak up about the removal of the public comment opportunity? And if he really does care, why doesn't he use his influence with other members of the neurodiversity movement?

And perhaps it's time to educate our congressional representatives and senators on the complete waste of taxpayer money that is demonstrated by the IACC.

John Stone

Hi Bill,

No, it is the Interagency Autism Coordinating Committee, set up under the National Institute of Mental Health.

Bill

I just did a quick google search, and found several groups with "IACC" as their acronym. But, the correct "IACC", I assume, is about conferences, correct? That "IACC" has a slick, well-funded website, but they are thin on actually *SAYING* anything of substance. It looks like a lot of "smoke & mirrors", to me....
(And BTW, "personalized medicine" is a FedGov effort to use DNA/genetics to individually track and follow citizens..... The REAL Q.? is, ....*WHO* runs the FedGOV?....

Greg

Perhaps who can blame them. Get a load of this comment from the last meeting!

Note: Profanity redacted in this document

John Best January 13, 2017
In all the years you have been wasting time with this [profanity redacted], you have refused to tell the
truth about autism. Go [profanity redacted] yourselves.
John Best
Londonderry, NH

Katie, I am also noticing Autism Speaks on their site are also not providing a comment section. It's one 'inspiring' story after another about parents coming to grips with their kids' autism and the 'positive' takeaways, but no where can the reader provide his/her reaction.

Linda1

I have been recently viewing the Holocaust survivors testimonies on youtube. You'd think that they would be all the same story, but each account is unique, compelling, revealing, heartbreaking, describing how the world changed around them as their government, neighbors, friends, schools, communities, systematically shut them out, deprived them of their dignity, their rights, sustenance, space, belongings, and the lives of most around them.

I think it was German survivor, Ellen Brandt, who told what happened to her in a Berlin elementary school - that the children were always seated in alphabetical order. One day she and the other 8 Jewish children (or 8 in all, I can't remember) were made to sit by themselves at the back of the room and the teacher was no longer allowed to talk to them or call on them in class. They could not ask questions or speak to or play with the other children. They were to have no contact with either the non Jewish children or the teacher.

Thanks for this report, Katie.

https://www.youtube.com/watch?v=FOe6CAbITtM

kws

You're right - our government is a disgrace. What they've done, and continue to do, is disgusting. Whether its IACC, Autism Speaks, the American Academy of Pediatrics, Lancet, Merck, Pfizer, the special masters at the Department of Injustice, CBC news...its just greed at the expense of innocent children. Regressive autism has an obvious cause and the bs wears so thin now. Its hard to watch after so many years and so many damaged lives.

I'm sorry about your son, I hope you find moments of happiness together and he makes progress.

Patience (Eileen Nicole) Simon

Katie, Thanks for naming the nasty IACC member who claimed "we are smart people, we don't need to hear the same public comments over and over." His remark followed a summary and categorization of written public comments.

In my written comments, I asked for DISCUSSION, not just a summary. I am glad my comments, since 2003 remain online. The brain damage that leads to autism, by all of its myriad genetic and perinatal causes must be looked for.

Complications at birth (head trauma and asphyxia) have been reported more often than any other predisposing factor. And, the damage caused by asphyxia is well known. Clearly this is evidence they want to bury. The same sites in the brain are affected by Mercury, lead, valproic acid, alcohol, and many poisonous substances used as herbicides and pesticides.

We all must go to whitehouse.gov and click on "contact the white house" to bring our serious needs to the attention of President Trump.

Bob Moffit

It has been long-recognized .. by our long-suffering community .. now further SILENCED and therefore easier to IGNORE ....... that the IACC and NIH .. are nothing but two bottom-feeding organizations .. within the SWAMP that our public health bureaucracies have become over recent decades.

DRAIN THAT DAMN SWAMP ...

John Stone

Thanks Katie

In the words of Brecht's poem "The Solution"

"After the uprising of 17 June
The Secretary of the Writers Union
Had leaflets distributed in the Stalinallee
Stating that the people
Had forfeited the confidence of the government
And could win it back only
By redoubled efforts. Would it not be easier
In that case for the government
To dissolve the people
And elect another?"

We are now in an East German situation: thought must be controlled by government patronage - the people must be dissolved. It is rather pathetic that Dr Gordon proposes to allow one speaker a year for two minutes. Would it not be better just get rid of "the people" altogether. Show some gumption, man!

I notice Robert Ring is still on the IACC and so is another old favourite, Gerry Dawson - who once welcomed a rate of autism in South Korea of 1 in 35 as a wonderful opportunity. Also Dr Amaral, who seems too grand to explain his amazing thoughts or justify them.

Stalin alley is emblematic.

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