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PBS Frontline: The Vaccine War

16 Apr

I first heard that the show Frontline, from the Public Broadcasting Service (PBS), would be doing a show on “The Vaccine Wars” by reading comments posted online by supporters of groups like Generation Rescue. I was somewhat taken aback that they were happy to hear this was coming as Frontline is a very evidence-based show. I couldn’t see it being very supportive of Jenny McCarthy.

Frontline’s website had this to say about the show:

Public health scientists and clinicians tout vaccines as one of the greatest achievements of modern medicine. But for many ordinary Americans vaccines have become controversial. Young parents are concerned at the sheer number of shots–some 26 inoculations for 14 different diseases by age 6–and follow alternative vaccination schedules advocated by gurus like Dr. Robert Sears. Other parents go further. In communities like Ashland, Oregon, up to one-third of parents are choosing not to vaccinate their kids at all. And some advocacy groups, like Generation Rescue, argue that vaccines are no longer a public health miracle but a scourge; they view vaccines as responsible for alarming rises in certain disorders, including ADHD and autism. This is the vaccine war: On one side sits scientific medicine and the public health establishment; on the other a populist coalition of parents, celebrities (like Jenny McCarthy), politicians and activists. It’s a war that increasingly takes place on the Internet with both sides using the latest social media tools, including Facebook and Twitter, to win the hearts and minds of the public.

I guess I am not on the “latest” social media tools, but I am blogging on the topic so I figure I count as a small part of the “war”.

Reading the above I felt that “The Vaccine Wars” was not going to be the Jenny McCarthy friendly show some were expecting. Being put on the side against “scientific medicine” is usually not a good thing. Also, Generation Rescue tries to pitch itself as being “pro safe vaccine” rather than anti vaccine. I doubt they would like to see themselves as being characterized as arguing “that vaccines are no longer a public health miracle but a scourge”. Then again, times may be changing with the founder of Generation Rescue stating:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

That’s hard to fit into a “pro safe vaccine” image.

One way to tell for certain if Generation Rescue and other groups are afraid of upcoming media attention is when they start attacking spokespeople like Paul Offit (chief of infectious diseases at the Children’s Hospital of Philadelphia, and co-inventor of the RotaTeq vaccine against rotavirus). When that happened (recent blog posts on the Age of Autism, resurrecting old, incorrect information) I knew it was likely that “The Vaccine Wars” was not going to be a pro-Jenny program.

As it turns out, a video clip has been added to the Frontline website for “The Vaccine Wars”:

And, guess what, Dr. Offit was interviewed by Frontline for the piece.

The show airs on April 27th, and will be available online then as well.

Perhaps it is time for those who support the vaccine-causation idea to re-evaluate their position. I can’t tell how many times I’ve been told I need to be “open minded” about the subject. Open minded includes being willing to admit that your ideas on vaccines-causing-autism were wrong.

Let’s see–

One of the main proponents of the idea, Dr. Andrew Wakefield, was found to be unethical and dishonest
The two main theories, really the only two theories, have failed (“not even close”) in the courts
The media is moving away from giving the vaccine-causation idea much weight.

Of course, maybe I’m wrong. Maybe FrontLine will finally tell the story the vaccine-causation groups believe. Maybe they will uncover the vast conspiracies that are hiding the truth. Maybe. I doubt it.

Brian Deer discusses Andrew Wakefield’s “autistic enterocolitis” in the BMJ

15 Apr

Before the General Medical Council reached a verdict on Dr. Wakefield, Brian Deer was promising that he was going to report on the data Dr. Wakefield used for his now retracted Lancet paper. We were told that he would give a first time ever view of a journalist allowed to check the facts on a scientific research paper.

After the GMC verdict was handed down, I watched the Sunday Times for such an article. I waited. Well, the wait is over. And it isn’t in the Times. Mr. Deer reports his findings in the British Medical Journal (BMJ).

Although much of the attention on Dr. Wakefield’s work has centered on the possible MMR connection, the topic of a “new syndrome” called “autistic enterocolitis” was proposed in that paper. In Wakefield’s “autistic enterocolitis” under the microscope, Mr. Deer takes a closer look at that claim. He does what is very rarely done: he obtained original data used for the study and obtains expert opinions on that data.

In his introduction, he notes the “new syndrome” and the MMR angles of the Lancet paper. Citing the press release from the Lancet paper:

“Researchers at the Royal Free Hospital School of Medicine may have discovered a new syndrome in children involving a new inflammatory bowel disease and autism,” the institution announced in a press release in February 1998. “Their paper . . . also suggests that in a number of cases the onset of behavioural symptoms was associated with MMR vaccination.”

Mr. Deer notes that before any patients were investigated, Dr. Wakefield was already proposing in a submission to the Legal Aid Board that such a new syndrome exists and it is linked to regression in children.

“In contrast to the IBD cases, which have a prima face [sic] gastrointestinal pathology, children with enteritis/disintegrative disorder form part of a new syndrome,” said Wakefield and the lawyer in a confidential submission for legal aid funding for the project in June 1996, before any of the 12 children in the paper had been investigated. “Nonetheless, the evidence is undeniably in favour of a specific vaccine induced pathology.”

For emphasis:

The evidence was “undeniably in favour of a specific vaccine induced pathology”.

Before children were investigated.

That on its own is huge. And, from what I can tell, not consistent with the image Dr. Wakefield is portraying in the alternative media.

That said, was there evidence of this “new syndrome”?

But when the children were brought in to the Royal Free for ileocolonoscopy, between July 1996 and February 1997, a snag in Wakefield’s project emerged. The hospital’s pathology service repeatedly judged colonic biopsy samples to be unexceptional, and thought bowel disease was a possibility in only one child.

The Royal Free’s own pathology service thought that the biopsy samples were unexceptional.

How can Mr. Deer make such a claim? He obtained data from the children’s records from their investigations at the Royal Free. Unfortunately, the actual samples are no longer available, but the reports are, and Mr. Deer submitted these to experts to review:

The biopsy slides are no longer available, according to one of the paper’s authors, Professor Amar Dhillon, but the GMC obtained all but one of the hospital pathology reports, and for the missing case I obtained the discharge summary. I passed the summary and reports to specialists for their reaction. They concluded that most of the 11 children reported as having non-specific colitis in the Lancet paper had been reported by the Royal Free as having normal pathology.

One expert reviewer stated:

“In the present reports and patients, overall, it is my impression that 8 of the 11 [for whom pathology reports were available] were normal,” Karel Geboes, a professor in the gastrointestinal pathology unit of the Catholic University of Leuven, Belgium, told me.

How does this compare to what was reported in the Lancet?

Eleven of the 12 children were said to have “non-specific colitis”: a clinically significant inflammation of the large bowel. In all 11, it was said to be “chronic,” while in four it was reported as both “acute and chronic.”

In other words, the report in the Lancet is not consistent with how experts interpret the pathology reports.

Mr. Deer further notes:

In fact the [Royal Free’s pathology] service identified findings suggestive of possible inflammatory bowel disease in only one of the 12 children. “The mild patchy generalised increase in inflammatory cells with lymphoid aggregates and follicles is not very specific but could be in keeping with low grade quiescent inflammatory bowel disease,” it reported for child 2. But this inflammation resolved after two months’ enteral feeding with a product now marketed as Modulen. A repeat ileocolonoscopy found no abnormality, and a food intolerance was diagnosed.

Yes, it appears that the pathology service, at Dr. Wakefield’s own hospital, at the time of the investigation, didn’t find evidence of abnormalities reported by Dr. Wakefied’s team.

In the GMC hearing, one of the co-authors on the Lancet paper, Dr. Susan Davies, discussed her concerns about the changes in the findings from normal to abnormal at the time of the investigation.

These changes—from normal to abnormal, or from healthy to diseased—had also raised concern in the mind of at least one of the paper’s authors. In September 2007, Davies, the lead histopathologist for the Wakefield project, was examined at length before the panel. “When you were given a draft of the Lancet paper, did you read it?” she was asked by Sally Smith QC, for the doctors’ regulator.
“Yes,” Davies replied.
“What was your overall view of the terminology used in relation to the histology findings in the Lancet paper, just when you read the paper?”
“I was somewhat concerned with the use of the word colitis.”
“First of all, what did you understand that word to mean?”
“I personally use that terminology, ‘colitis,’ when I see active inflammation, or a pattern of changes which suggest a specific diagnosis, and it was not my impression that the children coming through in the spasmodic way that they had, I [sic] had formulated some distinct pattern warranting that terminology.”

If even a co-author was concerned, and the hospital’s pathology reports don’t support the diagnosis of colitis, the obvious question would be: how did the paper reach it’s conclusions?

The answer appears to be that the results underwent a second review. This second review is discussed in the Lancet paper, but there is no mention of the review changing the interpretation of the data,

Mr. Deer poses an important question:

[H]ow many peer reviewers would have felt comfortable approving the paper if they had known that the hospital pathology service reported biopsy specimens as largely normal, but they were then subjected to an unplanned second look and reinterpreted?

Which we are fortunate enough to have answered. Mr. Deer was able to obtain an answer from one of the peer reviewers:

“I’m surprised the GMC didn’t make more of this,” said David Candy, paediatric gastroenterologist at St Richard’s Hospital, Chichester, who reviewed the paper in 1997. “That’s an example of really naughty doing—to exclude the original pathology findings.”

“Really naughty doing”. Not very clinical but I think it tells the story well.

Is it possible that the hospital’s pathology service missed the condition? Apparently at least one author (Dr. Walker-Smith, a co-defendant with Dr. Wakefield in the GMC hearings) noted this in his GMC testimony:

And how bad was this “colitis,” such that the hospital’s pathology service didn’t spot it as the children came through? Walker-Smith told the GMC panel that he had “concerns” about the service and its ability to detect inflammation.

In his report, Mr. Deer counters with:

Yet inflammatory indices that were not reported in the Lancet paper, including serum C reactive protein concentrations and other blood tests, were almost all within normal ranges for the 12 children.6 And as an alternative explanation for any inflammation that was present, nearly all of the children had constipation with megarectum16 (unreported in the paper), which specialists say can cause cellular changes.

Mr. Deer attempted to speak with Dr. Dillhon, a co-author on the Lancet paper. Dr. Dillhon viewed the slides made from the samples taken from the children, and he graded them with Roman numerals to rank the degree of inflammation. At some point, those Roman numerals were translated into “non-specific colitis”.

So who translated these scores on the grading sheet into findings of “non-specific colitis” in the paper? Dhillon says it wasn’t him. He says he would like to see the slides again, but they are missing from the Royal Free laboratory. “He [Dhillon], Andrew Anthony, and Wakefield all looked at them,” I was told, on Dhillon’s behalf, by a senior member of staff at the Royal Free. “Andy [Wakefield] then synthesised their results into what appeared in the paper.”

But still, according to Mr. Deer, “…how the Roman numerical scores, histopathological gradings for a variety of sites in the colon, became the “colitis” findings might, under such circumstances, be anybody’s guess.”

Mr. Deer posits a possible scenario, based on Dr. Wakefield’s complaint to the press complaints commission:

Wakefield wrote: “When the biopsies were reviewed and scored by experts in bowel pathology—namely, Drs Dhillon and Anthony—these doctors determined that there was mild inflammation in the caecum, ascending colon, and rectum,” he said. “This was correctly reported as non-specific colitis in the Lancet.” In other words, it looks like it was Wakefield who translated the scores.

A companion editorial was published in the BMJ by Prof. Sir Nicholas Wright, warden, of Barts and the London School of Medicine and Dentistry, Queen Mary University of London. He lists in his conflict of interest statement: “He has provided expert opinion in the case of Wakefield v GMC and acted as a character witness for Professor John Walker-Smith.”

His editorial:

Does autistic enterocolitis exist?
Despite the retracted Wakefield study, questions remain

His conclusion:

Is autistic enterocolitis a histopathological entity or even an entity at all? In view of the lack of data and the entrenched position of many of the protagonists and antagonists, any firm conclusion would be inadvisable. The expert review, referenced by Deer, concludes that key areas such as the prevalence and best treatment of gastrointestinal disorders in people with autistic spectrum disorders are incompletely understood, and that evidence based recommendations are not yet available. We should remember, as recent experience in several fields has shown, that although science has its defects, it is a self correcting process. Time is, perhaps, the wisest counsellor of all. In the meantime, this case offers a salutary reminder for researchers and journal editors alike that coauthorship means bearing responsibility for what is written.

First, I would submit that Dr. Wright is not being clear on the subject. It is not whether autistics have a greater prevalence of GI issues, or whether there is a difference in the treatment for autistics. The question is whether there is a specific entity which is unique to autistics: autistic enterocolitis. Further, it is also a primary question whether “autistic enterocolitis” is causal in autism. While one can hide behind the “you can’t prove a negative” shield, the answers at present appear to be no to both questions.

Second, the idea that science is a self correcting process is often times true. In this case, it clearly is not. The science, the Lancet paper, was not corrected through science but through investigative journalism. Without the stories in The Sunday Times, Dr. Wakefield’s “science” would likely still be in the official record of The Lancet. Much more, the Lancet study and the presumed expertise of Dr. Wakefield would have likely been key in litigation in the UK and the US. Without Mr. Deer’s continued scrutiny, the facts behind the research into the Lancet paper, specifically that the pathology reports on those children were not consistent with the findings of the paper, would almost certainly not have come to light.

Returning to Mr. Deer’s article, he concludes:

So what should we make of all this? Now the Lancet paper is retracted, its findings don’t officially exist. And, if Dhillon is right in saying the slides can’t be found, the ultimate proof is missing. All we have are the pathology reports, which independent specialists seem to agree are largely unremarkable. “They wanted this bad,” commented Tom MacDonald, dean of research at Barts and the London School of Medicine and coauthor of Immunology and Diseases of the Gut. “If I was the referee and the routine pathologists reported that 8/11 were within normal limits, or had trivial changes, but this was then revised by other people to 11/12 having non-specific colitis, then I would just tell the editor to reject the paper.”

Clearly the Lancet paper should have been rejected. But this isn’t just a scientific paper that made a bad conclusion. This paper impacted multiple families inside the autism communities to believe that their child’s autism was caused by MMR. This paper led many families in the autism communities to apply poorly researched “therapies” to their disabled children. This paper led many families to stop vaccinating their children, leading to outbreaks of measles in the UK and elsewhere.

It is easy to go through Mr. Deer’s paper in the BMJ point by point in a clinical fashion, noting how the research went awry, showing that “autistic enterocolitis” has what appears to be no founding in science. But how does one express the reaction to so much damage caused by Dr. Wakefield’s investigation?

Of course, a further question I have and I bet I share with Dr. Wakefield’s supporters is this: is Brian Deer finished or is there even more yet to be unearthed in this sad tale of research gone awry?

Blogging about IMFAR

12 Apr

INSAR‘s annual International Meeting For Autism Research (IMFAR) is convening in Philadelphia this May (May 20-22).

Thanks in part to a generous travel grant from the Autism Science Foundation, I’ll have the opportunity to attend – and of course I’ll be blogging about it here at LBRB.

For the most part, I plan to write about research, projects, researchers themselves, or talks that I find interesting and attain sufficient understanding, but I’ll also be sharing a little with LBRB readers, about the overall IMFAR experience upon my return. I’m also looking forward to attending the Autism Science Foundation’s “Science and Sandwiches” where plans for this IMFAR lunchtime edition include presentations “from six ASF-funded pre-doctoral students who will describe their new research projects”.

I’ve always been pleasantly surprised by, and appreciative of scientists in general. I’ve had the opportunity to exchange ideas with many over the last few years while writing articles at both LBRB, and Autism Street, and even had the benefit of informal peer review (for some of the more scientifically involved articles) prior to publishing.

If the opportunity arises to meet and talk with individual researchers, I also hope to write some brief “Meet the Researchers” type pieces for those who might be able to take 10 minutes for a few questions. Hopefully this can bring a certain aspect of personal conversation with some of the scientists who’ll attend this year to readers at LBRB.

As more details about the planned presentations (and even posters) become available, be sure to let me know about any you (dear readers) think look particulary interesting. Simply leave a comment, or drop me a note at:

autism blogger at gmail (remove the spaces, and use the symbol for at).

Jenny McCarthy asking for grant from Pepsi for Generation Rescue

9 Apr

Pepsi has a grant program, the Pepsi Refresh Project. The idea is simple, organizations and people can apply for grants in different categories ($5K, $25K, $50K and $250K). Those projects that get the most votes each month get funded.

Jenny McCarthy is asking people to vote for Generation Rescue’s plea: Help children with Autism throughout the USA. The stated purpose is:

– Provide biomedical treatment grants for families who can not afford it. Each grant provides two visits with a physician specifically trained to treat autism and diagnose the child’s needs. The grant also provides essential vitamins and minerals that scientific studies have shown are deficient in children with autism, as well as science-based laboratory testing.

– Each grant costs $2,500. The support of $250,000 will allow us to provide treatment for 100 families.

Here is what Generation Rescue had to say about their program on their website:

Generations Rescue’s Rescue Family grants are designed to provide support to individuals and families affected by Autism Spectrum Disorders. Each grant recipient will receive 2-doctor visits with a specially trained physician who treats autism; vitamins, minerals and supplements for 90 days, a Generation Rescue Rescue Mentor and dietary intervention training.

$2,500 buys $90 worth of supplements and two doctor visits?

The Pepsi idea is pretty cool. Here’s my suggestion: go to the website, search under the term disability, and vote for some cool projects.

What changes are in store for Generation Rescue?

9 Apr

If you haven’t read the celebrity gossip news you may have missed it (and good for you!). Jenny McCarthy and Jim Carrey have split. As an aside, in classic Hollywood fashion, news also just came out that her ex husband is in a new celebrity relationship. I’ll never understand the way Hollywood uses relationships for image promotion.

That said, this is not an easy thing to blog about. First, there is the fluff component. This isn’t a celebrity gossip blog. Second, Jenny McCarthy’s kid is only seven. He doesn’t deserve to lose another father figure. I wish him well.

One question this poses is whether Jim Carrey will continue with Generation Rescue?

It appears not. Generation Rescue has revamped their website. The picture of Jim Carrey, Jenny McCarthy and Evan McCarthy is gone. GR is now just “Jenny McCarthy’s autism organization”. Jim Carrey is no longer on the page of the Board of Directors.

Jenny McCarthy and Jim Carrey were the wealthy celebrity couple that revitalized Generation Rescue. And, let’s face it, Jim Carrey is the part of the couple with most of the celebrity and wealth.

The Generation Rescue website is probably in flux so we shouldn’t jump to any conclusions about what is missing as of now. That said, consider this:

Not only is Jim Carrey missing, but Dr. Jill James is no longer listed as a part of their science advisory board.

Mention of Desiree Jennings is gone. (She is the person who claimed that a flu vaccination caused dystonia, a claim that didn’t appear to hold up to scrutiny ). I don’t think this signals anything other than it was a convenient time to quietly pull support for someone who was, well, a liability.

On the main page for Generation Rescue, Jenny McCarthy is pushing hard to get a $250,000 grant from Pepsi. Is this prompted by the loss of Jim Carrey’s financial support? If you haven’t seen the plea from Ms. McCarthy, consider it. At least the first 20 seconds. That way you can hear her state that Generation Rescue “…helps and Treats thousands, millions of children with autism”

Yes, millions of children are supposedly helped by Generation Rescue. That would be more autistic kids than in the entire U.S..

I remember when Jim Carrey first hit the scene. He paid for a full page ad for Generation Rescue in USA Today. Just up and paid for it. Those ads cost over $200,000 as I recall. Now GR is pushing hard for a grant of that size.

Jim Carrey was a bit of a lightweight when it came to autism and disability issues. He demonstrated that clearly at the Green Our Vaccines rally. But, he was an asset to Generation Rescue. His leaving can’t be helping GR.

IACC conference call on the Strategic Plan

8 Apr

I just received this announcement from the IACC:

A Conference Call and Webinar of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process

Please join us for a conference call and webinar of the IACC Subcommittee for Planning the Annual Strategic Plan Updating Process that will take place on Monday, April 19, 2009 from 10:00 a.m. to 12:00 p.m. ET.

No registration is required

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Webinar Access https://www2.gotomeeting.com/register/455522202

The agenda for this conference call is to discuss plans for updating the 2010 IACC Strategic Plan for Autism Spectrum Disorder Research.

Please visit the IACC Events page for the latest information about the conference call, including access information, as well as all other IACC events.

For more information about the IACC, please visit www.iacc.hhs.gov.

Now follow the IACC on Twitter (www.twitter.com/IACC_Autism).

The Contact Person for this conference call is:
Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov
Please Note: This conference call may end before 12:00 PM if the discussion is completed ahead of schedule.

Young Autistic and Stage Struck

8 Apr

Channel 4 in the UK has this show: Young Autistic and Stage Struck. I have to see if I can download it from iTunes, as it looks like it may be very cool.

This landmark series follows nine autistic youngsters as they attempt to produce their very own stage show, under the guidance of theatre professionals who’ve never worked with an autistic cast before

The synopsis for Episode 1 looks good:

The first episode of the series introduces the first five youngsters. Twelve-year-old Ben has high functioning autism: he’s exceptionally bright but experiences acute loneliness. But as the project develops he starts to bond successfully with the other youngsters.

Andrew, 17, is classically autistic, and despite limited social skills, he is very keen to have his first proper relationship with a girl. From day one he starts getting closer to Claire, 19, and takes her on the first date of his life: a night at the cinema. Claire is a talented singer and pianist who also struggles socially.

Mollie, 11, is prone to tantrums and lengthy sulks, which test her mother’s considerable patience. She suffers from PDA – Pathological Demand Avoidance – a pervasive developmental disorder with symptoms including mood swings, language delay and obsessive behaviour. A talented singer, Mollie was diagnosed with autism at four.

Eleven-year-old Jozsef is more challenged by his autism, but his playfulness makes him endearing to others and soon turns him into the group joker.

Basically, it looks like a reality show where they recruit a group of autistic kids, working with the National Autistic Society, and together with Lyric Hammersmith help the kids workshop a show.

What a cool idea.

Polly Tommey poses as advocate for autistic adults

7 Apr

Polly Tommey is in the news again with this piece in the Guardian, Attention-grabbing antics for autism. It concerns her latest poster campaign, timed to coincide with the start of the General Election.
Hello boys polle tommey poster

I have left the following comment.

I have followed Ms Tommey’s attempts to present herself as a mainstream autism advocate for some time now on my blog, Action for Autism, and your headline,”Attention Grabbing Antics” is apt. If Ms Tommey wants us “to move away from the discussion about vaccines because she knows how divisive it is” she could make a start by removing her current Face Book campaign, “Mothers Supporting Andrew Wakefield’s Work.”

Ms Tommey complains about “bickering.” But other organizations have no problem working together. The Autism Act came about with the support of 15 autism organizations working together. Many of their members served on the External Reference Group for the Autism Adult Strategy for England which reported to the government. They mobilized their members to submit over a thousand responses to help shape government strategy. This will be reflected in the statutory guidance that will be published later this year. Ms Tommey’s contribution to all this was nil.

She states that “we haven’t a clue what to do with adults with autism.” That is because she and her supporters have spent the last 10 years arguing that autism is a biomedical disorder of childhood that is treatable with the untested and unproven interventions marketed by her husband. The National Autistic Society has taken a different stance with its Don’t write Me Off campaign Most of us are not interested in what to do with autistic adults. But we we are trying to find out what we can do for them and what they want for themselves.

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White House Remains Steadfast In Support Of Disability Council Nominee

30 Mar

Disability Scoop has a new article about the nomination of Ari Ne’eman to the National Council on Disability.

Mr. Ne’eman’s appointment has been on hold in the Senate, as noted in a New York Times article and on this blog (and others).

“We are still behind Mr. Ne’eman and hope for a quick confirmation,” a senior White House official told Disability Scoop on Monday.

The appointment has the support of multiple disability advocacy groups. Again, from Disability Scoop:

Nonetheless, more than a dozen disability advocacy groups including the Autism Society of America, Easter Seals, Special Olympics and the American Association of People with Disabilities have expressed support for Ne’eman’s appointment.

Ari Ne’eman’s appointment to the National Council on Disability on hold

28 Mar

In a piece in the New York Times, Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, Amy Harmon discusses Ari Ne’eman and his nomination to the National Council on Disability (NCD).

Mr. Ne’eman’s name was submitted by the White House as part of a group of nominees to the NCD. His nomination is to succeed Robert Davila, whose term has expired. Mr. Ne’eman’s nomination was “ordered to be reported favorably” by the Senate HELP committee on March 10th and sent to the full senate. At present, the nomination is on hold.

Mr. Ne’eman is an autistic adult. If his nomination is confirmed he will be the first autistic to serve on the NCD. He is probably best known his efforts with the Autistic Self Advocacy Network (ASAN), which he founded. ASAN seeks to advance rights of autistcs as reflected in its mission statement:

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

I will repeat for emphasis: “ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens”.

I find that a position difficult to argue with. Who wouldn’t support access, rights and opportunities for autistics?

This mission statement is fully in line with the purpose of the National Council on Disability, which also promotes rights and opportunity:

The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

As the parent of an autistic child with very significant disabilities, I can say without reservation we need groups working on improving the rights and access and opportunities of autistics. I believe Mr. Ne’eman and the National Council on Disability would be an excellent match.

In her piece in the Times, Ms. Harmon notes that it is unclear who put the hold on the nomination and what the reason may be. Senate rules allow for a single senator to place a hold, anonymously, for any reason (including just plain obstructionism):

Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.

The Senate has been rather obstructionist in approving many Obama administration appointments, leading the President to employ recess appointments in order to get some of his nominees into jobs. Recess appointments are not the sort of action the President takes lightly, indicating the level of obstructionism in place.

Mr. Ne’eman’s nomination to the NCD generated some discussion within the online autism communities when it was announced. For many people this centered on a question of whether Mr. Ne’eman viewed autism as a disability. Many went so far as to outright claim that he does not see autism as a disability. It would seem clear that Mr. Ne’eman views autism as a disability merely from ASAN’s mission statement which places ASAN as a disability rights organization. For those who remained unsure, Mr. Ne’eman answered this claim quite clearly in a recent piece he wrote for Disabilty Studies Quarterly:

It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the “cure” approach is not the best way forward for securing people’s quality of life.

Mr. Ne’eman and ASAN have been very active in united efforts by multiple disability groups, such as the recent request for an investigation into the methods employed by the Judge Rotenberg Center (which includes electric shocks and seclusion). One thing lacking in most autism organizations, in my view, is the recognition of our place within a larger disability community. Mr. Ne’eman’s track record of collaborations within this broader community is another sign that he would be an excellent candidate for the NCD.

The Times article concludes with:

But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living.

“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”

I agree with Mr. Grossman that this is a great thing to have an autistic nominated to the NCD. As I’ve already pointed out, Mr. Ne’eman’s goals fit those of the NCD quite well.

One notable piece of irony in this story is that the organizations which are critical of Mr. Ne’eman’s nomination have no positions held by autistics. The notable exception is Autism Speaks, which only recently added an adult autistic (John Elder Robinson) to an advisory position. As an additional irony, it is very likely that Mr. Ne’eman’s own advocacy efforts were partly responsible for Autism Speaks giving a position to an adult autistic.

Autism represents a “spectrum” of disabilities. All to often, Mr. Ne’eman’s efforts are framed as being part of some divide between the “high functioning” and “low functioning” ends of the spectrum.

The New York Times piece noted this in this section:

But that viewpoint [neurodiversity], critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.

Neurodiversity certainly does not represent only “high functioning” autistics as its critics would imply. I will not speak for Mr. Ne’eman nor ASAN, but from my own perspective. First, neurodiversity is not limited to autism. Second, within autism, neurodiversity does not apply only to the “high functioning” autistics. In my opinion, the neurodiveristy “viewpoint” is one that stresses rights for all, regardless of the level of “functioning” or presence or lack of any neurological “disorders”.

There are those who try to downplay Mr. Ne’eman’s disability. Keep in mind, we are talking about a man who spent part of his education in a segregated special education program. The fact that he was able to self advocate his way out of this program is to his credit.

For the record, my perspective is that of the parent of a young child with multiple disabilities including very significant challenges due to autism. I would argue that it is precisely children like my own who most need other people to fight to protect their rights. It is from that perspective that I welcome the nomination of Mr. Ne’eman and look forward to his confirmation in the full senate.

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