Mary Holland of the Elizabeth Birt Center for Autism Law and Advocacy
(EBCALA) recently posted
A Critical Review of the Performance of the Interagency Autism Coordinating Committee (IACC). Mary Holland's completely fallacious and misleading diatribe is
rivalled only by her and her "colleagues" embarrassing display at the recent IACC meeting.
Mary Holland is anti-vaccine to the core and no amount of her unctuous rhetoric can disguise that fact.
Just the Vax is pleased to have a guest blogger, Robertson
deconstruct Mary Holland's deceitful and self-serving castigation of the
agency that has been tasked to recommend research avenues that would
best serve all autists simply because vaccines explicitly do not
predominate the IACC's recommendations.
Ms. Holland's statements from her "performance review" are in blockquotes and colour-coded headings also follow her "performance review". Robertson's responses are in standard text. Ms. Holland begins with:
In 2006, Congress passed federal legislation that allocated hundreds of
millions of dollars to address the autism epidemic. There was little
doubt our nation was facing a crisis of unparalleled proportion or
that we urgently needed to address it. Legislators on both sides of
the aisle collaborated and eventually united to pass the Combating
Autism Act (CAA) to do so.
The critique starts out with a misrepresentation of the CAA (
Public
Law 109–416).
No where in the text of the Act does it mention the word
"epidemic". Sure, it mentions the need for epidemiological
studies, but legislators recognized that there is a great need for
research into autism, without invoking an "epidemic" to
justify it. They also knew that there wasn't evidence to
support the idea that there is an epidemic.
Part of the legislation called for the creation of a panel of experts to develop a strategic plan for autism research. This panel was to consist of medical experts, philanthropists, activists, and parents nominated by their peers and selected for their expertise, leadership, integrity, and commitment. The panel was to be known as
the Interagency Autism Coordinating Committee (IACC) and a variety of views about the causation and possible treatments for autism were to be represented. Dr. Tom Insel of the National Institute of Health, under the direction of the Department of Health and Human Services, was appointed to lead it.
Public
Law 109-416 calls for the
reformation of the IACC. The
IACC was in existence since 2001. The director of NIMH was the
chair from the beginning, and Tom Insel took over with the third
meeting, when he became NIMH director. Public
Law 109-416 doesn't mention a variety of views about causation
and treatments. Members are drawn from both the government and
the public sector. The section on public members states:
"(2) ADDITIONAL MEMBERS.—Not fewer than 6 members of the Committee, or 1/3 of the total membership of the Committee, whichever is greater, shall be composed of non-Federal public members to be appointed by the Secretary, of which—
‘‘(A) at least one such member shall be an individual with a diagnosis of autism
spectrum disorder;
‘‘(B) at least one such member shall be a parent or legal guardian of an individual with an autism spectrum disorder; and
‘‘(C) at least one such member shall be a representative of leading research, advocacy, and service organizations for individuals with autism spectrum disorder.
Note that the Law calls for public members to represent, in order, autists, parents and, last, at least one member as a representative of an organization. The default is that a member is not a member of an organization. Complaints that a member needs to represent an organization are red herrings.
If one wishes for the committee to represent all views of causation, consider this:
a study by the MIND Institute presented at IMFAR reported that 20% of parents believe that vaccines cause autism. The public members
of IACC
do represent this diversity, with the majority of parents not ascribing to this failed notion of a vaccine epidemic.
At the convening of the first IACC meeting, the rate of autism in the United States was widely accepted as 1 in 166 and that rate was considered an alarming increase over what had previously been considered a rare condition. Today, that rate has skyrocketed to 1 in 88 among children born in 2000. Despite this incredible increase over a short six-year period, and despite the hundreds of millions of dollars given to the IACC through the Combating Autism Act to address it, the autism epidemic has proven to be substantially more serious than anyone imagined when the legislation was first passed. More troubling, it shows no signs of abatement. And nothing that has come out of the spending authorized in the Combating Autism Act offers even a remote hope for halting the increase.
First, one must note that this misrepresents the CDC autism prevalence estimates. They are not a declaration of the true, secular prevalence of autism. They are estimates based on the best efforts of a hard working team doing record reviews.
The increase in autism prevalence represents children born before even the first IACC was formed in 2001. Much before the IACC as formed by the CAA. The "epidemic" has been shown to be largely due to quantifiable social factors, through research directly supported by an
NIH Director's Pioneer Award. There is no reason to expect that the factors he identified and quantified are the only social factors at play in the rise of autism prevalence. In other words, there
may be, and almost certainly are, more social factors which are behind the increase. Such research as Bearman's is a direct challenge to the notion of the "epidemic" as defined by Mary Holland, and it is disturbing (but expected) that she ignores these important results.
Despite Congress’s original intention, few can argue that the IACC thus far has been effective. Worse, significant evidence exists to demonstrate that this did not have to be so. From the controversial appointment or retention of committee representatives, to the troublesome history of committee members themselves, to the lack of accountability for the few advances made in autism research, to the questionable direction of the Strategic Plan, it is fair to state that the IACC is not living up to Congress’ and the public’s expectations.
Holland implies she knows what Congress's "original intention" is. She clearly thinks that this intention was to prove that the rise in prevalence is an epidemic caused by vaccines. There is no language of vaccines in the language of Public Law 109-416. This is not an oversight. Congress was well aware of the debate and
chose to leave this language out of the Law.
Appointment of committee representatives who subscribe to the same views as the
majority of the scientific community,
and of the majority of parents, is hardly "controversial". Positions held by Mary Holland, untenable positions of vaccines inducing an epidemic,
those are controversial.
The phrase "Troublesome history of committee members themselves" is nothing short of a thinly veiled personal attack on the members.
Further, substantial concern exists that the situation is only getting worse. With a less representative panel than ever slated to begin working this July, we worry if any serious advancement for people with autism will be made now or in the near future. We urge the taxpayers of the United States and the leadership of our nation, along with the committee members themselves (both past and present), to critically examine their approach to the autism epidemic so that we may adequately and immediately address these shortcomings.
It has not been established that this is a "less representative" panel. Much to the contrary, the science has progressed away from the idea of a "vaccine epidemic" and the public in general and the autism community in specific has moved away from this failed notion.
Critique of the Newly Appointed IACC Members
At this point Holland moves into attacking those on the committee who do not share her minority viewpoint.
A new panel of IACC appointees will begin their service on July 10, 2012. Per the CAA, committee members must first be nominated and then selected from a pool of candidates to serve. A variety of philosophies about autism causation, prevalence, and treatment are supposed to be represented.
A variety of philosophies is represented on the IACC. The IACC even includes people who still adhere to the failed notion of mercury causing an autism epidemic.
Unfortunately, the new panel appears to be anything but representative. Of the 11 appointed panel members, there is only one who represents the view of tens of thousands of parents that autism is a medical condition that can and should be prevented and treated. Lyn Redwood, RN, represents those parents and served on the previous committee as well. She is also the mother of a fully recovered child, and the only person representing families who has been a consistent advocate for environmental research funding, including independent vaccine safety science.
Ms. Redwood is the one parent of a high functioning child serving. Parents of children with greater challenges are also represented. With roughly a half million (estimated) child autists in the U.S., representing "tens of thousands" of parents is representing a minority. Minorities should be represented, but should not dominate the process.
These highly qualified candidates that share similarly representative perspectives, however, were not appointed.
As are many, many, other highly qualified candidates.
Instead of these experienced representatives who are widely admired in the autism parent community, an ideologically biased panel of representatives was selected for the current IACC. In fact, not only are the positions and qualifications of the new appointees in stark contrast to those mentioned above, there is widespread speculation within the autism community that they were selected for their hostility to investigation of environmental causes of autism, including vaccines.
Why should the views of autism parent community--or more specifically the minority fraction that Holland represents--be the standard by which the committee is formed? How does ascribing to the position supported by science, as the majority of those appointed to the IACC do, become "ideologically biased"? How does a committee which represents the fact that the vaccine-causation idea is a minority viewpoint be defined as "ideologically biased"? The answer is clear: the IACC is not the ideologically biased group in this discussion. It is worth being reminded that the text of the Law does not call for representation of the vaccine-causation viewpoint. In fact, the requirement for public members calls for autist representation and then a parent. Last is a member of a "leading" autism organization. Apparently, being an autist or the parent of an autist is not a qualification for being a representative on the IACC in Holland's view?
For example, one newly appointed member, Matt Carey, father of an affected child, is best known in the autism community by a pseudonym he uses on a UK blog. He represents no national organization and actively opposes all vaccine safety research while he attacks parents who advocate for it. Under his pseudonym, Carey is best known as an ardent defender of Dr. Paul Offit, the wealthy developer of Merck’s rotavirus vaccine.
What does it matter how Matt Carey is "best known" to Holland's minority community? Again, the CAA does not require members to represent an organization. Much to the contrary. What matter is there that Carey blogged under a pseudonym especially given that his identity is know well known. Carey's blog has multiple discussions of vaccine safety studies but apparently studies which show vaccines to not cause autism are not real vaccine safety studies to Holland.
Ironically, Holland attacks Carey while claiming without any evidence that Carey attacks others.
Dr. Jose Cordero has served at the CDC for 27 years, oversaw the early days of the autism epidemic, and did nothing but mount a “learn the signs” campaign to address it. Cordero is also on record for pressuring the journal Pediatrics to publish a deeply flawed vaccine safety study in Denmark. Worse, he allocated millions of taxpayer dollars to Danish research Dr. Poul Thorsen, who was indicted by Department of Justice for 13 counts of wire fraud and 9 counts of money laundering of CDC money allocated to autism research. Dr. Cordero has never been held accountable for his failure to sound the alarm on the autism epidemic during his tenure at the CDC.
As a representative from Puerto Rico, Jose Cordero represents the interests of under represented populations. His service to the nation should be applauded, but such is her bias against the CDC that Holland sees this as a deficit. She attempts an ad hominem attack on Dr. Cordero, trying to link him to the manager of a research group whose financial activities came under question years after Dr. Cordero's tenure at the CDC. The work performed by researchers in Dr. Thorsen's team has been replicated by other groups and has not been called into question by others outside groups like those represented by Holland.
James Ball represents an autism organization representing few families.
Holland herself represents an autism organization representing few families, unless EBCALA has a much larger membership than is publicly presented. An In other words, this is a red herring.
Dennis Choi is on the staff of the Simons Foundation, a research organization that is solely committed to a genetic causation model of autism; Choi was formerly an employee of the pharmaceutical giant Merck, one of the world’s top-three vaccine manufacturers. There is also concern about his level of commitment to serving on the IACC given a track record of poor attendance.
Dennis Choi represents an organization which is the largest private supporter of autism in the world. The fact that Simons is willing to work with the IACC and share information should be applauded.
Alison Singer is the mother of an affected child and a previous representative of Autism Speaks on IACC. She resigned from Autism Speaks regarding differences of opinion about vaccine research but was allowed to keep her IACC seat. She now serves as President of the Autism Science Foundation, an organization she started that is funded at least in part by vaccine makers.
Seats on the IACC are given to individuals, not to organizations. As an attorney, Holland should be well aware of this as the language of the Act is quite clear. The ASF does not disclose donors publicly, and makes no mention of vaccine manufacturers offering support. More to the point, the ASF funds quality research. Holland is welcome to discuss what parts of that research program she finds objectionable.
Idil Abdull is a mother of an affected child, represents no national organizations, and has promoted vaccination in concert with local public health officials.
Again, when did being the parent of an autist become a drawback to service on the IACC? Why is holding the widely accepted view that vaccination is an effective public health measure a deficit? These are not deficits to the majority of Americans, or even the majority of the autism community.
Scott Robertson and John Elder Robison are both high functioning adults with Asperger’s, representing only the top 5% of people affected by autism. Robison is the author of a well-received memoir, but did not graduate from high school (in contrast to Crosby who is studying for a graduate degree in Public Health). Noah Britton is an additional high functioning Asperger’s representative; his most notable activity is leading a comedy troupe called “Asperger’s are Us” that makes light of the suffering of affected individuals and families. While we support including self-advocates, the dichotomy of function level within the community means that the majority of individuals, who are more severely affected, are underrepresented on the committee.
This is a group of red herrings. The Law requires that there be autist representation. By definition, autist public representatives will be "high functioning" to the point that their disability does not restrict them from participation.
This represents the divisive attitude that Holland has towards adults and those who have challenges, but challenges of a different nature than those autists who also have intellectual disability.
Dr. Anshu Batra is the mother of two boys on the autism spectrum. Her main role in the autism community appears to be that of a public advocate for the American Academy of Pediatrics in their fight against vaccine safety research. Dr. Batra represents no national autism organization. She has written no books, conducted no research on autism, and it is unclear whether her medical practice specializes in any kind of autism treatment.
Dr. Batra's role in the autism community is providing medical services to autists and their families. This is admirable, so Holland ignores it. Again, the complaint about a national autism organization is a red herring.
Dr. David Mandell is a psychiatrist and researcher who also represents the Autism Science Foundation, despite its small size. His apparent goal is to develop new interventions for autism treatment, primarily using pharmaceuticals.
Dr. Mandell does not represent the Autism Science Foundation, as is made clear in the HHS announcement of new members (
http://www.hhs.gov/news/press/2012pres/03/20120329a.html). But, this is a red herring as an organization could have multiple members. Holland didn't spend much effort to research what his goal is, but, rather, focuses on her own misconceptions.
Astonishingly, even though significant evidence exists to show autism is an environmentally caused disease, no environmental scientist has been appointed. This seems not only illogical, but also highly irresponsible.
It is hard to interpret the composition of the new IACC as anything but a stinging rebuke to those who believe autism is a treatable, medical condition with underlying environmental causes and who proposed qualified candidates to represent that view. It is even harder to believe any real progress will be made under the direction of the new committee members on the environmental triggers of autism.
There is a strong interest in environmental research, just not the small corner that Holland is focused upon (vaccines). It is astonishing that Holland has not accepted the mountain of evidence that her own, very narrow focus, has little to no support in the science. The idea of vaccines causing an autism epidemic was never well supported and the primary hypotheses have been disproved.
The Troublesome History of Panel Members
Another section of personal attacks.
Throughout the IACC’s existence there have been a number of incidents that give many stakeholders great pause. These incidents reflect not only a lack of urgency and responsibility on behalf of many of those serving on the panel, but in some cases, a blatant lack of professionalism and compassion. They are truly troubling.
Holland, and others, appears to define "sense of urgency" as "accepting the failed notion that vaccines cause autism". As such we are left with the choice: a committee that meets her definition of working with a sense of urgency or a committee which adheres to evidence and science and is working diligently to making life better for autists and their families.
Additionally, important conflicts of interest that legitimately raise concerns over the independence of the panel have gone unaddressed. For example, it is no secret that among parents vaccines are widely considered to play a significant role in the development of autism. Although controversial and widely dismissed by sophisticated public relations campaigns, far more science supports vaccines as a causal factor in autism than mainstream press coverage suggests. Most notably, our federal government has been quietly rewarding compensation for autism in association with vaccine injury for decades, lending support to the association that parents have recognized for years. A Pace Environmental Law Review article published in 2011 documented these previously hidden cases of autism and vaccine injury in great detail.
Again, the MIND Institute's study points to the majority of parents having moved on from the vaccine causation hypothesis. Holland, as one of the authors of the PACE study, has ironically made a minor ethical lapse in failing to point out that she has a conflict of interest in promoting her own, flawed, research. By failing to inform the public of her own role, she appears to be less biased about the results than she is.
Despite this association between vaccine injury and autism, Dr. Tom Insel continues to head the IACC, even though he has a brother who became wealthy as the developer of a mercury-containing vaccine. Dr. Insel appeared at a National Autism Association conference in Atlanta, Georgia in 2007 and suggested that one day there was hope to create a vaccine to prevent autism. The insensitivity of this comment to the audience he was addressing cannot be overstated.
"Despite this association" is a non sequitor. Mentioning her own PACE study does not create an association.
Dr. Insel's brother helped to reduce infectious disease through an invention made decades before the first IACC was formed. Whatever patent has long since expired and the opportunity for financial gain is gone. Neither Dr. Tom Insel nor his brother stand to profit in any way from whatever outcome there may be from research into the autism-vaccine link.
It is heavily ironic that a group purporting to support prevention research should be so critical of remarks by Dr. Insel about the possibility that a preventative method may some day exist. It also speaks to the question of whether these groups are "pro vaccine safety" or "anti vaccine" that the mere mention of a vaccine to prevent autism would be considered insulting.
Dr. Insel’s demonstrated his unwillingness to adequately investigate vaccine safety when he rescinded a committee vote in favor of vaccine research. In December 2008, the IACC had approved two studies to address vaccine safety and autism. In a dramatic turn of events, Dr. Insel called for a re-vote on a previously voted-on and approved element of the Strategic Plan of the Combating Autism Act. The re-vote to reverse this previous decision was a surprise to the public members of IACC and was not listed on the meeting’s agenda.
Dr. Insel did not rescind the committee's vote. He called for a new vote and the committee rescinded their vote. That's what a re-vote means. Vaccines are not mentioned in the Combating Autism Act. Also, there is no "strategic plan of the combating autism act". The strategic plan is a product of the IACC.
Consider the history of the re-vote. It is known that one public member was in communication with her organization the day before discussing how to vote in the re-count. How is this a "surprise"?
Other incidents also bring Dr. Insel’s fitness to serve into question. For example, in April 2007, he refused to ride in an elevator with a mother and her affected child on their way to hearings about autism. He also had to publicly apologize to IACC member Lyn Redwood for a note found on the floor during an IACC meeting that was written by panel member Dr. Story Landis. In it, Landis questioned the motives
of parents such as Redwood who were seeking vaccine research, while also suggesting that the most severe cases of vaccine injury should be investigated.
How, exactly, does apologizing on behalf of another member bring his fitness to serve into question? This is simply an attempted ad hominem attack on Dr. Insel.
The autism rate has doubled on Dr. Insel’s watch. None of the research that IACC has funded under his direction has led to significant advances in understanding autism causation. No funding has significantly improved the lives of those with autism. As hundreds of thousands of affected individuals now reach adulthood, IACC has done virtually nothing to prepare the country for this reality. The most promising area of research, environmental causation, has been studiously avoided and is likely to be avoided going forward under his stewardship. This failure of leadership, together with conflicts of interest, procedural lapses, and the decision to appoint an unrepresentative body of new committee members, speak to Dr. Insel’s unfitness to continue as Chair. IACC needs new leadership and new members if it is to succeed in its mission.
Again, the estimated autism rate
for children born before the IACC was formed, has increased. Holland seems to wish for research to allow for the prevention of autism through time travel.
Ironically, the primary evidence that Holland would use to support the idea that
autism is largely environmental was funded under Dr. Insel's watch: the California Autism Twin Study. She wants to use research funded under his stewardship to attack him for not funding research valuable to her community.
The IACC's Strategic Plan does call for a high level of environmental risk factor research. How well the plan is put into action is not within the control of the IACC.
And here is where Holland is propagating yet another misconception: the IACC is an advisory committee. It does not fund research. It has no research budget. The strategic plan is set forth to advise government and private entities in the direction of research. The IACC can not require researchers to submit proposals, nor can it fund proposals which are not competitive.
Concerns with the Strategic Plan
In addition to the unbalanced philosophical composition of the panel members, coupled with the history of troublesome behavior and conflicts of interest, there is also great concern that the money dedicated towards addressing autism research and treatment is not being allocated responsibly or effectively. For example:
Once again, it is worth noting that Holland's viewpoints on vaccines, both as a possible risk factor and as the proposed primary focus of the IACC is a minority viewpoint. It is interesting that one very stretched attempt at declaring a member has a conflict of interest is inflated now into a "history" of "conflicts of interest".
- The panel is excessively focused on early intervention. There is very little money allocated towards helping children older than age of 3.
- There is little focus on the services needed among an aging population of affected people, such as living assistance, job placement, and housing.
In this instance Holland is faced with "You get what you ask for". By focusing discussion on causation and recovery, she and her colleagues have created the atmosphere which has focused on the young. She and others have actively denied the existance of, much less advocated for support for, the autist adult population. Even in this critique, the only mention of adults focuses on the youth of today becoming adults. Not the adults of today. This is incredibly poor planning on the part of her generation of advocates.
- There is significant over-investment in genetic and genomic research, especially since autism is an environmentally caused disorder. None of this research has produced findings of diagnostic or therapeutic value. Indeed, despite claims that autism is highly heritable, no inherited gene of major effect has ever been found. Despite claims of progress in genes of minor effect and gene mutations, no consistently replicable findings have been produced.
The IACC has called for more investment in environmental risk factor research. Holland has not been honest with her "tens of thousands" of parents by hiding this fact.
Autism is more than
claimed to be "highly heritable". It
is highly heritable. It may not be as heritable as previously estimated, but it is still highly heritable. All genetics is not heritable, as evidenced by Down Syndrome.
- There has been no accountability on behalf of the IACC panel for a lack of progress in either addressing or stopping the autism epidemic. Despite hundreds of millions of dollars spent on autism research, not a single new case of autism was prevented.
There is certainly accountability for public members who are stakeholders. To imply otherwise is dishonest and insulting. The future for themselves (autists) and their children (parents) will be partially defined by what they do. Holland's own experience shows this. She appears to be waking up to the fact that there is little support for adult autists. She and so many "advocates" have denied the existence of adult autists to the point that little work has been focused on them.
It is unfortunate that so much time, money and effort was spent chasing MMR and thimerosal as possible risk factors. Rather than face another 10 years without progress, it is time we moved on.
"not a single new case of autism was prevented". The IACC can't take responsibility for the Rubella vaccine, but it has been preventing autism for decades. Holland appears to have an aversion to acknowledging any benefit to vaccines, finding it insulting that a vaccine could have a benefit to the autism community.
- Significant research gaps, such as the specific role of the environment in the causation of ASD, are not being addressed. A recent analysis by The Coalition for SafeMinds showed that, in 2009, only 7% of research funding went to environmental causation.
It would benefit the community if SafeMinds and other organizations made it clear that the IACC has called for a greater level of support for environmental causation. It is also worth repeating, the IACC is an advisory committee and does not have control over what project proposals are submitted or funded.
Critique of the 2011 Summary of Advances
Thus far, very little understanding about autism or the treatment of it has been advanced by the IACC, in spite of its web page which claims otherwise. A thoughtful examination of the most recent research shows it has achieved little.
If one uses as the yardstick providing evidence for the vaccine hypothesis, one will be disappointed with the progress made. Holland also implies in the above that the IACC has more power than it has. Again, it is an advisory committee and does not do research nor does it control any research budget.
For example, the Strategic Plan research in 2011, which consisted of 20 different studies, is categorized as helping facilitate answers to 7 different questions about autism. These were the actual answers they found:
Holland's interpretation of the advances is demeaning and childish (in italics below). However, let's approach them in a more adult fashion than the one which she sets:
When should I be concerned? (2 studies)
Answer: By 1 year old, pediatricians should be checking.
The idea that autism can be identified before age 1 is an important one. Since this runs counter to the idea that vaccines cause autism typically in the second year of life, it is not surprising that Holland doesn't give this result respect. Perhaps Holland could explain why it is mockable that one could start on early intervention as soon as possible.
How can I understand what’s happening? (4 studies)
Answer: You can’t. It’s genetic.
Holland appears to be ignorant of the importance of genetic results. And genetics in general. Understanding which genes are important and the role they play is very important. Perhaps the best progress made so far in treating autism is for those with fragile-X, a genetic condition. By focused effort in this area over 2 decades, potential treatments are being made available. Treatments which may hold promise for treating autism even in autists without fragile-X.
What caused it? Can it be prevented? (5 studies)
Answers: Yes. No. It’s genetic. It’s environmental. It’s genes and the environment.
Once again, it is difficult to answer such a sarcastic and demeaning response. However, the fact that autism risk is multifactorial is important. Holland seems to want to quash genetic research in much the same manner that she wrongly claims environmental causation research was quashed.
Which treatments will help? (3 studies)
Answer: Most medications don’t work. Social engagement targets should be added to behavioral therapy goals. The LEAP model helps only if a teacher implements it well.
Learning what doesn't work is important. The alternative medical community, supported by groups such as EBCALA, would be wise to learn this lesson.
Where can I go for services for adults? (1 study)
Answer: Nowhere, even though the needs are high.
Holland could improve her argument if she were to point out where she, EBCALA or any of the groups promoting vaccine causation have stressed the need for services for adults in the last 10 years. Groups such as EBCALA groups have actively denied the existence of the adult autist population in order to promote the "epidemic".
What does the future hold for adults? (3 studies)
Answer: (1) Nothing alarming. In the UK, there are just as many ASD children as adults, and since nothing has really changed over time, everything should be fine. (2) We don’t know. We have to research it more. (3) Technology will help somehow.
It is difficult to not note how insulting this comment is. Holland appears to have not read the report beyond the result that the autism prevalence is about 1% in adults. Adult autists are under employed and unemployed. Adult autists live alone. Adult autists are unidentified and unsupported. That this translates to "everything should be fine" is ignorant and insulting and demonstrates the contempt she and her organizations have shown for the needs of the adult autist population.
What other infrastructure and surveillance needs must be met? (2 studies)
Answer: We need more studies, more early detection, and more services.
Does Holland disagree with the idea that we need more studies, more early detection and more services? The section title is "what...needs to be met". Are we supposed to say, "no needs. We have all the infrastructure and surveillance needs met". Holland's comment is sarcastic and demeaning.
To summarize, in spite of spending millions of dollars just in 2011, we learn that autism is genetic, environmental, a combination thereof, and that really, they still aren’t sure.
We learn that most medications don’t work. That therapy only works if the teacher is good. That social goals should be set for affected children. That there are no services for adults. That there is an increase in ASD, but there’s not an increase in ASD. And that pediatricians should be on the lookout for autism by one year of age.
The monumental waste of time, money, resources, and effort that went into confirming, or confusing, that which could have been identified through common sense and daily life is stunning. None of these studies did anything to advance the quality of life for those affected by autism and their families. We can and must do better immediately.
To summarize, after a decade of actively working against improving the lives of adult autists, a decade focused on a single goal (vaccine causation), a decade of wasted effort, Holland, EBCALA and other organizations are now trying to shift the blame on to others for their own mistakes.
Demand for Change
Thankfully the government appears to have heard the demand for change. The demand for change away from a minority of parents controlling the public discourse.
At the current rate of 1 in 88 American children, autism is a national health emergency. The time is long past due for the Department of Health and Human Services to start treating it like one. We are deeply dismayed by the federal government’s failure to respond to this crisis effectively and as such, seek the following:
Autism is a disability. Any rate of autism is a need for concern especially when our society does not properly support this population.
That the Department of Health and Human Services, under the direction of Secretary Sebelius, declares autism a national health emergency. The human and financial toll of autism is catastrophic. The problem cannot be solved unless it is first acknowledged.
This is just typical political rhetoric. Calling autism a "national health emergency" does nothing. Action, not words are needed. Action such as learning from the mistakes of Holland and like minded individuals who spent too much time chasing an idea which had little support from the beginning and now is clearly false.
That those who have been in charge of autism policies in this Administration, including Dr. Insel, chair of the IACC, be fired. The rate of autism has risen steadily on Dr. Insel’s watch. We expect accountability. The new members of IACC should all be dismissed, and the new Chair of IACC should commence a new search for committee members.
We, the majority, also expect accountability. We expect that those who have driven the public discussion on autism into fruitless areas like vaccine causation should step aside and allow people of action and good ideas to step in. Thankfully the government appears to have heard this plea.
That Secretary Sebelius meet with a group of representatives from FOCUS Autism, a coalition of organizations representing over 100,000 people, to discuss the autism health emergency. We do not sense that she understands the urgency of this situation.
The fact that the same few autism groups can continually make new organizations (canary party, FOCUS autism, etc.) and make unsubstantiated claims of broad support doesn't make for progress.
That the General Accounting Office study past autism funding to see why almost all money went to genetic research, which we now know, based on peer-reviewed science, is not the predominant factor in autism. Environmental research has been grossly underfunded. We want to understand if corporate interests or other improper interests distorted research priorities.
Here Holland does one of her most ironic steps: she uses recent results (the California Autism Twin Study) while claiming that no good results have come forth in autism research. She denies the strong heritable component demonstrated in the CATS, effectively saying that the risk factors for about 1/2 of the autist population are unimportant and should be ignored.
That the Center for Disease Control and Prevention rescind their recommendation for day of birth vaccination against hepatitis B. There is no medical reason for this intervention at such an early and fragile point in infant development. The CDC has never demonstrated the medical necessity for this extremely serious intervention. Peer-reviewed science has shown an association between day of birth hepatitis B vaccination and autism. Vaccination against hepatitis B, unless the mother is herself infected, should occur around puberty when children themselves might be at risk of contracting the disease.
What does this have to do with autism? Answer: nothing.
The medical reason for this intervention is that it works. Hepatitis B infection rates are dropping in the US with the implementation of childhood vaccination. Holland ignores the very real risks to infants from Hepatitis B infection, which include chronic infection which leads to serious complications and death. Waiting for puberty for this vaccination would put a great deal of people at risk.
That the Government Reform and Oversight Committee of the U.S. House of Representatives hold hearings in the near future on the role of federal authorities in this crisis. No Congressional committee has looked seriously at the conflicts of interest in federal activity on autism in almost ten years. As part of this process, Congress must examine the Vaccine Injury Compensation Program and how it has been quietly acknowledging autism as a vaccine injury for almost 25 years. We need real inquiry by Congress into this debacle.
Holland feels that her own study is much stronger than it actually is. Having made one weak attempt to claim a conflict of interest in the IACC, she now moves for a congressional inquiry into COI's in all federal activity?
Every 20 minutes a child is diagnosed with autism. It affects every aspect of the child’s life, his or her family members’ lives, and the community. In some states, we now have as many as 1 in 29 American boys falling somewhere on the spectrum. The argument that this is due to better diagnosis on the one hand, and bad diagnosis on the other, is outrageous and irresponsible. Even Dr. Insel has admitted the rise in autism cannot be attributed to better diagnosis, stating, “…there is no question that there has got to be an environmental component here.”
Holland has cherry picked a quote out of the proper context. Insel was speaking to the idea of better diagnosis. He can be found
here
discussing the effects of diagnostic changes and changes in ascertainment.
From this she further puts words in his mouth.
Given his own admission that autism is absolutely on the rise; given that there is no such thing as a genetic epidemic; given that since the enactment of the Combating Autism Act in 2006, we have not only not advanced our understanding of autism, but have watched it explode in incidence, we demand that our Administration take our concerns seriously and act expeditiously to do better.
Insel's comment in the very interview Holland is referring to is "As far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected" A strong statement but not an "admission that autism is absolutely on the rise".
Holland makes the common mistake of misrepresenting incidence. We don't have true incidence data in the U.S. or elsewhere. We have prevalence estimates. Estimates which are acknowledged to be likely undercounting autists in our population. A series of underestimates, even if the estimates are going up, is not the same thing as an increase in the actual number of autists.
To continue to ignore the urgent needs of our most vulnerable population is a moral failing the likes of which our nation has perhaps never seen. Unless we do something drastic immediately, this is destined to be our legacy.
A large fraction, perhaps the largest fraction, of our "most vulnerable population" are adult autists. Holland may not have seen them before, but they are most definitely here. Her denial of their existence has resulted in a delay in understanding the needs of this population. Truly a moral failing in the service of a political goal: the acknowedgement of a "vaccine epidemic" in spite of evidence to the contrary.
We must choose to be the kind of government that is willing to honestly, thoroughly, independently, and adequately investigate the autism epidemic, regardless of where it may lead; to acknowledge any role we may have inadvertently played in its causation or continuation; and to use all of our strength, talent, and resources to do whatever it takes to make it right.
We must chose our organizational leaders the same way. Which is why the majority of autists and parents are not members of the groups that Holland is allied with.
Our children, and the world’s children, deserve nothing less.
Sadly, she ends with the same sentiments that have gotten us into such trouble: the feeling that autism is only about children. Adult autists just don't seem to exist in her world view.
People, autists or not, children or not, deserve nothing less than an abandonment of the type of leadership Mary Holland has provided.
