RECOMMENDED: Autism Hearing, 11/29/12, House Committee Oversight and Government Reform

[proverbialwisdom]

Reposted in response to the incessantly uninformed and inane throwaway comments about this issue on DU.

http://www.c-spanvideo.org/program/309672-1

FEDERAL RESPONSE TO RISE IN AUTISM RATES
NOVEMBER 29, 2012

House Committee Oversight and Government Reform

Domestic and advocacy group officials testified about autism. Among the topics they discussed were efforts to increase awareness and understanding of the disease, the cost of the disease, limited public health resources, and public health policy.

Representatives from the Centers for Disease Control and Prevention (CDC) and National Institutes of Health (NIH) denied a link between rising autism rates and vaccinations. Representative Burton showed a video about research on the effect of mercury on the brain.

3 hours, 49 minutes | 27,190 Views

Reposted with permission from the author, Twyla:

http://www.ageofautism.com/2013/03/iacc-lots-of-redundancy-little-innovation.html#more

Posted by: Twyla | March 08, 2013 at 05:14 AM

http://www.c-spanvideo.org/program/309672-1

Here are some excerpts from this hearing... These are not exact transcriptions, but are generally accurate.

00:38:27 Rep. Darrell Issa (R–CA) asks good questions (5 min. 30 seconds)

• Did autism predate vaccines? In other words, was there autism before there were vaccines?

• Is it fair to say that today the state of science is that autism has multiple causes?

• Is autism a group of afflictions with multiple causes, forms of treatment, prevention?

• Is it fair to say that we can rule nothing out in absolute terms as a contributor? Mercury in the air? Vaccines? We can rule nothing out including causes we have not yet looked at?

00:44:00 Rep. Elijah Cummings (D-MD) In talking with the folks behind them there seems to be frustration about coordination of efforts, research. (“I wish you could see them behind you – there’s frustration!”) I want us to move towards making a difference. What can we do to help the folks behind you get to the coordination, the kind of things they’re looking for, to have an impact?

00:50:40 Rep. Dan Burton (R-Indiana) shows a video from the University of Calgary on the effects of mercury on nerve cells (4 min. 30 seconds) “I know there’s many causes of autism, but the one we’re talking about today is mercury in vaccines and in the environment.” “It is worse than an epidemic. It is an absolute disaster.” “How can anyone look at this and see the actual brain cells deteriorating and say that mercury does not have an impact on neurological problems?” “My grandson got 9 shots in one day and it turned him into a horrible situation, where we found him banging his head against the wall, unable to use the bathroom…” “I would beg you to take mercury out of all vaccines…”

01:04:36 Rep. Paul Gosar (R-Arizona), who is a dentist, talks about his family history of celiac disease, how much his autistic nephew benefited from a GFCF diet, and what a shame it is that there is not more study of dietary intervention. “We should be focusing on the family; they’re telling you what’s going on... We’ve got researchers who don’t listen to them.” (5 minutes)

01:10:10 Rep. Dennis Kucinich (D-Ohio) talks some more about mercury in the environment. (5 min. 35 seconds)

01:15:46 Rep. Patrick Meehan (R-Pennsylvania) asks a bunch of hard hitting questions and gets woefully inadequate responses from the to govt officials. For example:

“Have you ever seen anything in which there has been such a dramatic progression in the incidence of diagnosis in a 6 year period, in your experience at the CDC?” Dr. Boyle says they look at trends blah blah blah, and Rep. Meehan follows up,

“Has anything had a trend with this kind of accelerating pace?”

He asks why this is a referred to us a “public health concern” rather than a “public health crisis”, and says that this should be on the front burner of CDC every day. Dr. Boyle says that this is very important to the CDC and they are monitoring it. Rep. Meehan asks about accountability and asks who is in charge. Dr. Guttmacher says that the IACC comes up with a plan every year. Rep. Meehan asks who wakes up every morning and says “This is my priority. I am going to drive this train and make sure something happens today”? Rep. Meehan wants a “comprehensive national strategy with real accountability and timelines” and “dynamism in which emerging evidence is used” and a “real focus on a critical path”. Dr. G says they’ve seen an “acceleration in progress”. (6 min. 14 seconds)

1:22:20 Rep. John Tierney (D-Massachusetts) asks Dr. Boyle why thimerosal hasn’t been removed from all vaccines – is still used in multi-dose vials of flu vaccines. Dr. Boyle says she’s “not a vaccine expert” but her understanding is that multi-dose vials “are needed in certain contexts from an international or global perspective” and she’ll get back to him after confirming that. He asks about prevalence data in other countries and what is done to try to determine why there are different rates, and Dr. Boyle talks about a study of families. (5 min. 13 seconds)

01:38:53 Rep. Bill Posey (R-Florida) – one of the very best – don’t miss it!! Asks so many great questions that I can’t list them all, and he doesn't accept evasive answers.

• Congressman Weldon was a well respected medical doctor. Gleaned from him some certainty that he felt thimerosal in vaccines was definitely a contributing factor to autism.

• Recently read an article which said that until we introduced vaccines to Africa the African children were autism-free.

• Has the CDC done a study comparing vaccinated and unvaccinated children?

• Do you believe additional study would provide useful data in assessing the safety of childhood vaccines?

• So clearly definitely unequivocally you have studied vaccinated vs. unvaccinated? (um, no)

• Stop right there, that was the meaning of my question, you’ve wasted two minutes of my time.

• What steps has the CDC undertaken to ensure the integrity of the research that was performed by Dr. Thorsen who as you know has been indicted for misconduct and misallocation of resources?

• Have you gone back to validate the variety of studies he participated in? I mean you know this guy is a humongous scumbag, one of the most wanted men on earth, and you relied on him for data to determine whether thimerosal had a negative effect?

• You mentioned that you only have thimerosal in multi-dose vials? Why is that?

• Because I would think that if they took it out of the other vials there was a reason. How many multi-dose vials are there?

• I’ve seen a chart that ranks the longevity of the 30 nations with the best mortality rates in the world… We didn’t even make the top 30 – we’re the 34th, and ironically we require more vaccinations than any other country that’s healthier and has a lower mortality rate than us.

• Nobody’s talking about/against vaccines. We’re talking about thimerosal in vaccines and multiple bomb blast of vaccinations in a short period of time…

01:50:10 Rep. Chris Smith (R-NJ) says that it hurts the effort when people keep saying that the increase is due to better diagnosis, such as Dr. G. quoted in a NYT article saying that “the jury is still out”. Rep. Smith chairs the African Global Health and Human Rights Committee Foreign Affairs and African committee and has worked on the Foreign Affairs committee for many years, and says that they have never seen such a prevalence spike in Africa as they have seen during the past 15 years [during a time of more and more vaccines being distributed in Africa – many of which still contain mercury in the preservative thimerosal]. Asks why NJ has high autism rates, also asks about gut flora, and suggests having an office devoted to autism. (7 minutes)

01:57:10 Rep. Carolyn Maloney (D-NY) – another one of the very best.

• Rep. Maloney calls autism a “growing epidemic”.

• Used to be 1 in 10,000, now 1 in 88. Asks why, and says, “And I don’t want to hear better detection. We have better detection, but detection would not account for a jump from 1 in 10,000 to 1 in 88 – that is a huge, huge, huge jump. What other factors could be part of making that happen besides better detection?”

• Are you looking at vaccinations? Is that part of your studies?

• Are you having a study on vaccinations – and the fact that they’re cramming them down and having kids have 9 at one time? Do you have any studies on vaccinations?

• I must have had 50 different parents write me or come to me and say: I had a healthy child, then they had 10, 9, 6, vaccinations at one time and that child changed overnight and was knocking their head on a wall, was a changed child. In fact I had a family in my office today, and the mother broke down crying, she said my child was wonderful, bright, precocious, talking - she took those vaccinations and the child became incredibly sick and has never recovered.

• Now it used to be – my child never got more than three vaccines at a time. In the state of NY children are recommended to get 6 shots every two months. Why does the schedule require so many shots in such a short period of time? Why do you have to cram 9, 6 at one time when the verbal evidence seems so strong from so many people that they had a healthy child until they got vaccinated. You gotta just listen… Verbal evidence coming from parents – I had a normal child, gave them vaccinations, and then they came down with autism.

• Why do we have to have 9 or 6 vaccines every two months instead of spacing them over years, and wait for the scientific evidence?

02:03:05 Rep. Vern Buchanan (R-Florida) asks whether children get 40 vaccines today. Dr. Boyle and Dr. G. don’t know! Rep. Buchanan asks why we are getting so many more shots than in other countries, and than 40 years ago. Have we looked at the impact of these combinations of vaccines? Are we over-vaccinating our children? 1000% increase in autism during period when # of vaccines increased from 6 to 40. Talks about costs of autism – 2.3 million per person cost of life-time care, 137 billion per year for the country? Dr G “doesn’t have the data to agree or disagree” with these figures, just knows it’s a high number. (4 min. 20 seconds)

02:07:25 Rep. Elijah Cummings (D-Maryland) gets right to the heart of the matter: “There’s something wrong with this picture. There’s something wrong… When you’ve got this combination of shots, and you go from 1 in 10,000 to 1 in 88, it seems to me somebody would say, Wait a minute, let’s put the brakes on this and at least let’s try to figure out whether, if I’m giving a baby 9 shots in a day, how much impact that’s having – I mean it just seems logical – if they gave me 9 shots I don’t know what that... Let’s put some brakes on this – look at whether the multiple shot situation is causing this. I wish you could see the faces behind your. Grown men crying, and women crying. It seems like someone would say, maybe there’s an issue here? And if we’re going to err, let’s err on the side of keeping children safe, even if we just give one shot per day?

A beautiful, simple, eloquent statement. Says, let’s put the brakes on this and at least figure it out. (1 min. 40 seconds)

02:09:22 Rep. Issa (R-CA) - Says that the committee is going to consider the question of FDA approving individual drugs or vaccines without thoroughly studying the interaction. There has to be a systematic approach towards dealing with all of what we put in our body.

02:11:10 Rep. Jim Matheson (D-Utah) asks about the disparities in autism rates in different states. Utah has a rate of 1 in 47. He asks whether they are studying reasons for these disparities. Of course Dr. Boyle talks about differences in how states identify autism. Rep. M asks skeptically whether Utah is so much better at diagnosis? He asks whether they actually have validated that the reason for disparities is different rates of diagnosis, and do they have target dates for the current studies’ results. The response is vague assurances that they are looking at risk factors, vague statements about monitoring over the past ten years, “It’s a puzzle – we’re putting together the pieces”. Then he asks if there are any new effective therapy approaches emerging. Dr. G. says there are some behavioral therapies but they’re much farther from finding any medical therapies, but he hopes that they will find some eventually. (4 min. 30 seconds).

OK, we could argue about whether "most" of the hearing was about vaccines and autism. we could count up all the sentences spoken and compare the number of sentences on various topics. But there surely was a lot of airing of these issues. Groundbreaking.

[proverbialwisdom]

1. UK CryShame press release - 9 March 2013

Best translation of the research findings I've seen.

http://www.jabs.org.uk/

CryShame press release - 9 March 2013

http://www.cryshame.co.uk 

Important new research ( http://www.plosone.org/article/info:doi/10.1371/journal.pone.0058058 ) reports similar findings to the work of Dr Andrew Wakefield in the 1998 Lancet and in subsequent paper in the early 2000s

Groundbreaking new research examines the molecular structure of inflammatory material taken from the bowels of autistic children. It compares the structure of diseased biopsies in the autistic children with biopsies from three groups of non-autistic children with Crohn’s disease, ulcerative colitis, and histologically normal  (the controls). 

Previous research confirmed the pathological and immunological make-up of biopsies of autistic children, but had not to date identified its specific molecular structure. Children with the four different conditions have been found to have similar findings of inflammation. But it was not clear if this was the same condition shared by all four groups; or if a distinct condition was specific to autistic children alone;  or if indeed there was no disease in the autistic group. A molecular analysis of the genetic structure found in the inflamed bowel tissue of children in each group would provide initial answers to these questions.

To date government and medical scientists continue to deny an association between autism and bowel disease. In the UK there is currently no research into the association between autism and chronic bowel disease. This has been the predicament since the government and medical profession waged a campaign to discredit research from the Royal Free Hospital led by Dr Andrew Wakefield in 1998 and the early 2000s that first identified the presence of bowel disease in autistic children.

Following years of denial from government and the medical profession, new research published in the leading online journal PLOS ONE confirms the presence of intestinal disease in autistic children and supports reports from many parents of ongoing painful gastric problems in their autistic children.

The research studied bowel samples from 25 autistic, 8 Crohn's, 5 ulcerative colitis and 15 normal control children and found that inflammatory material obtained from the biopsies of autistic children had a distinct molecular structure that was different from the other three groups.

This is an important finding of the distinct genetic expression that has now been identified in autistic children as distinct from non-autistic children with Crohns, ulcerative colitis and normal bowels. It paves the way for future research into the specific molecular structure of the inflammation affecting autistic children and hopefully will lead to new interventions and treatment.

Background Notes

1. The first paper to bring to public attention the presence of bowel disease in autistic children was Wakefield AJ, (1998) 'Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children'.The Lancet published this paper in 1998 but subsequently retracted it in 2010 after the GMC found Dr Wakefield and Professor Walker-Smith guilty of serious professional misconduct.

2. Several former colleagues went on in the early 2000s to study the nature of the bowel disease in autistic children, focusing on the pathology of gut tissue and the presence of autoimmune features in the bowel (eg Furlano et al (2001) 'Colonic CD8 and γδ T-cell infiltration with epithelial damage in children with autism', Journal of Pediatrics, Vol. 138, 3).

3. The senior research leader of the Lancet and subsequent papers was Professor John Walker-Smith who in March 2012 had all the charges of professional misconduct made by the GMC quashed on appeal by Justice Mitting in the High Court.

4. Government Minister admits more needs to be done to research autism and bowel disease. Read letter here.

I added underline in critical note #3. FYI, Professor/Dr. John Walker-Smith is regarded as the co-founder of the field of pediatric gastroenterology (with Harvard Professor/Dr. Allan Walker).

[proverbialwisdom]

2. Rep. Meehan: "Who's in charge of this. Who wakes up in the morning and says this is my priority..."

http://www.ageofautism.com/2013/03/dr-tom-insel-on-autism-if-there-is-a-true-increase-if.html

Dr. Tom Insel on Autism: "If There Is a True Increase.." IF?
By Anne Dachel
March 19, 2013

For several years now I've been following Dr. Thomas Insel's work as head of the Interagency Autism Coordinating Committee.  I've also looked at his lectures on autism.

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COMMENTS:

Posted by: Bob Moffitt | March 19, 2013 at 08:09 AM

At recent Congressional hearing on autism .. Rep. Meehan .. totally frustrated and dissatisfied with answers given by public health officials .. asked:

"Who's in charge of this. Who wakes up in the morning and says this is my priority .. it seems to be the efforts so far appear to be "willy-nilly"?

If history is to be our guide .. since its inception .. the absolutely last person we can expect to "tear down the wall" that has protected the IACC's fruitless and incompetent search for answers identifying the "cause" of the autism epidemic .. is .. Mr. "willy-nilly" himself .. Dr. Thomas Insel.

Posted by: Raymond Gallup | March 19, 2013 at 11:03 AM

I guess this isn't an increase in autism?

The following:

COUNTS FOR ADULTS AND CHILDREN
RECEIVING SSI BENEFITS
FOR AUTISTIC DISORDERS
YEARS 2006 - 2011

Year Under 5 to 64

2006 84,217
2007 97,455
2008 112,414
2009 130,772
2010 151,260
2011 173,946

http://www.ssa.gov/policy/docs/statcomps/ssi_asr/2011/sect06.html
Online Tables 34 &35 on link above


Yearly increase in the number of children with autism age 6-21 in US Schools Since DSM IV (1994 to present)

Year Students
1994 22,780
1995 28,813
1996 34,082
1997 42,487
1998 53,561
1999 65,391
2000 78,717
2001 97,847
2002 118,603
2003 140,920
2004 166,302
2005 193,481
2006 224,415
2007 258,095
2008 294,302
2009 335,199
2010 369,664
2011 406,957

US Department of Education Source:
Online
https://www.ideadata.org/PartBChildCount.asp

6-21
https://www.ideadata.org/TABLES35TH/B1-3.xls

[proverbialwisdom]

3. RECOMMENDED.

http://thinkingmomsrevolution.com/tmr-video-why-did-you-write-this-book/

Posted March 13, 2013

We receive many questions from our blog readers and Facebook followers, so we decided to make a video answering the 10 most frequently asked questions. The number one question on the list is, “Why did you write the book Autism Beyond The Spectrum?” 

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More: http://thinkingmomsrevolution.com/media-kit/media-kit-videos/

[proverbialwisdom]

4. Katie Weisman: "Now that World Autism Awareness Day has passed, let’s assess where we truly stand."

http://www.ageofautism.com/2013/04/vaccines-and-autism-answering-the-wrong-questions.html#more

Posted by Age of Autism at April 05, 2013 at 5:46 AM

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Here are the US autism prevalence numbers in the years they were reported (birth years and ages vary from study to study).

•1970 1 in 14,857 (Wisconsin)
•1987 1 in 8333 (North Dakota)
•1989 1 in 2500 (Utah)
•1999-2003 1 in 321 (California)
•2001 1 in 150 (Brick, NJ)
•2001 1 in 625 (Texas Schools)
•2002 1 in 671 (California)
•2003 1 in 192 (Minnesota Schools ASDs)
•2007 1 in 150 (14 states ASDs)
•2009 1 in 125 (South Carolina 4s ASDs)
•2009 1 in 235 (California DDS)
•2009 1 in 110 (11 States, ASDs)
•2009 1 in 91 (National Phone Survey, ASDs)
•2010 1 in 124 (Salt Lake City – 8s, ASDs)
•2010 1 in 83 (Wisconsin Schools, ASDs)
•2011 1 in 213 (San Franciso Bay Area, ASDs)
•2011 1 in 108 (EI in Massachusetts, ASDs)
•2012 1 in 88 (14 States ASDs)
•2012 1 in 57 (Metro New Jersey 8s, ASDS)
•2013 1 in 50 (National Phone Survey, ASDs)

Isn’t anyone worried yet?

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Happy Day After World Autism Awareness Day. Isn’t it time to start the real conversation about autism?

Katie Weisman is the Executive Director of the Canary Party and serves as a Board Member and Director of Communications for SafeMinds. She is also the proud mom of three recovering 15 year-old young men..

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