Dr. Simon Murch and the GMC: free to continue unrestricted medical practice

24 May

Below is the finding of the GMC in the “Determination on Serious Professional Misconduct and sanction”

Bottom line:

Taking all of the above into account, the Panel concluded that Professor Murch demonstrated errors of judgement but had acted in good faith and that any professional misconduct on his part, such as his failing in duties of research governance and performing colonoscopies that were not clinically indicated, could not reach the threshold of serious professional misconduct because of the circumstances in which he found himself.

Accordingly the Panel found that Professor Murch is not guilty of serious professional misconduct.

In these circumstances it was therefore not necessary to consider a sanction and Professor Murch is free to continue unrestricted medical practice

The determination is presented in full below:

____________________
his case is being considered by a Fitness to Practise Panel applying the General Medical Council’s Preliminary Proceedings Committee and Professional Conduct Committee (Procedure) Rules 1988

Date: 24 May 2010

Professor (formerly Dr) Simon Harry MURCH

Determination on Serious Professional Misconduct (SPM) and sanction:

The Panel has already given its findings on the facts and its reasons for determining that the facts as found proved could amount to serious professional misconduct.

It then went on to consider and determine whether, under Rule 29(1) of the General Medical Council Preliminary Proceedings Committee and Professional Conduct Committee (Procedure) Rules Order of Council 1988, the facts as admitted or found proved do amount to serious professional misconduct and if so, what, if any sanction it should impose. It has accepted the Legal Assessor’s advice in full as to the approach to be taken in this case, and has looked at each doctors’ case separately but when considering whether Professor Murch is guilty of serious professional misconduct, has looked at the heads of charge found proved against him as a whole. It has not confined its consideration to the heads of charge; it has also had regard to the evidence that has been adduced and the submissions made by Ms Smith on behalf of the General Medical Council. On behalf of Professor Murch, it was submitted although he made errors of judgement, that not every error of judgment is misconduct, or wilful misconduct and as such, could and should not be considered to be serious professional misconduct.

Serious professional misconduct has no specific definition but in Roylance v General Medical Council [1999] Lloyd’s Rep. Med. 139 at 149 Lord Clyde, in giving the reasons of the Privy Council, said:

“Misconduct is a word of general effect, involving some act or omission which falls short of what would be proper in the circumstances. The standard of propriety may often be found by reference to the rules and standards ordinarily required by a medical practitioner in the particular circumstances…”

Lord Clyde went on to say:

“The misconduct is qualified in two respects. First, it is qualified by the word ‘professional’ which links the misconduct to the profession of medicine. Secondly, the misconduct is qualified by the word ‘serious’. It is not any professional misconduct which will qualify. The professional misconduct must be serious.”

The Panel has acted as an independent and impartial tribunal and exercised its own judgement on these matters. It has borne in mind the relevant GMC guidance at the time, namely the 1995 Good Medical Practice and, in so far as the findings relate to events after 1998, the 1998 Good Medical Practice. It has considered what has been adduced and submitted on behalf of Professor Murch about the standards and procedures prevailing at that time. The Panel has borne in mind the principles guiding a doctor as set out in the relevant paragraphs of 1995 Good Medical Practice which relate to providing a good standard of practice and care; good clinical care; keeping up to date; abuse of professional position; and the provisions as to research.

When determining whether the relevant conduct amounts to serious professional misconduct, the Panel considered all the evidence including issues of probity, honesty, medical ethics, the clinical interests of patients, the approach to research, appropriate clinical standards, Professor Murch’s attitudes to those issues in his practice generally and the views of the other experienced practitioners in the relevant field.

The Panel has borne in mind the Legal Assessor’s advice that Professor Murch is a man of good character, not just in the sense that he has no previous findings recorded against him by the GMC, but also in that he was professionally competent and highly regarded in his chosen field of practice at that time. It has taken into account his qualifications, experience and standing within the profession, with patients and the parents of patients, together with the testimonials submitted by colleagues, patients, and associates, relevant to the question of serious professional misconduct, and in the knowledge of the findings made by this Panel against him. In accordance with the Legal Assessor’s advice it has taken into account his own evidence and submissions made on his behalf about why he did what he did, or omitted to do whatever it is said he should have done, as well as the testimonial and other relevant mitigating evidence. The Panel heard positive evidence of Professor Murch’s clinical ability, integrity and the respect in which he is held, by witnesses called by the GMC at the fact finding stage. The Panel also heard further evidence of his good character in oral and written testimonials. He was described as a leader in his field with international recognition of his skill in paediatric gastroenterology in general and performing colonoscopies on children in particular. He has been Professor of Paediatrics and Child Health at the Clinical Sciences Research Institute at Warwick Medical School in Coventry since 2005.

In considering Professor Murch’s case, the Panel has also taken into account the passage of time before these matters were brought before it and the length of time this case has taken. It noted that the multiple sittings were for a variety of reasons including professional commitments of the Panel and requests from Counsel for reasons such as illnesses, accidents, unavailability of witnesses and preparation time.

The Panel considered the conduct of Professor Murch whilst he was registered as a medical practitioner and employed by the Royal Free Hospital Medical School as a senior lecturer and held an honorary consultant contract with the Royal Free Hampstead NHS Trust. Having completed his training under Professor Walker-Smith, he had become senior lecturer and an honorary consultant in March 1995, first at Queen Elizabeth Hospital for Children in Hackney and the Medical College of St Bartholomew’s, then in September 1995 at the Royal Free Hospital. The Panel acknowledges that at the material times he was at the beginning of his consultant career. Professor Murch’s academic work involved research projects relating to paediatric gastroenterology, and his clinical work involved advice and treatment relating to sick children. The Panel also noted that he and another colleague were responsible for undertaking colonoscopies on children at the Royal Free Hospital.

The children described in the Lancet paper were admitted for research purposes under a programme of investigations for Project 172-96, the purpose of which was to investigate a postulated new syndrome following vaccination. The Panel rejected the contention that Project 172-96 was never undertaken. It found that Professor Murch was, along with Dr Wakefield and Professor Walker-Smith, named as a Responsible Consultant in the application for Project 172-96, to the Royal Free Hospital Ethics Committee, and thereby took on the shared responsibility for the research governance of the application; for ensuring that only children meeting the inclusion criteria would be admitted; that conditions attached to the Ethics Committee approval would be complied with; and that the children would be treated in accordance with the terms of the approval given.

The Panel also accepted the expert evidence that Responsible Consultants who sign up to research are individually responsible and have a duty to ensure such research governance. The principles of research ethics and governance and in particular, the guiding principles with regard to children, require a doctor to conduct research within ethical constraints. An ethics committee, in performing its regulatory function, has a right to expect probity from applicant doctors. The Panel is aware of Professor Murch’s membership of the Ethics Committee at the material time. It noted that he had only been a committee member for a few months and had not received any formal training but nonetheless concluded that he would have been aware of such responsibility.

In relation to what became known as Project 172-96, Professor Murch had concerns about its nature from an early stage. He said he was surprised to find a copy of Dr Wakefield’s Proposed Clinical and Scientific Study paper in his pigeon-hole, on returning from holiday in July 1996. He said this:

“The document was produced by Dr Wakefield… and …he took from [a planning meeting in May 1996] the clinical plan and inserted it into a document of his own.”

It prompted Professor Murch to consider if this altered the nature of the proposed investigation of the children:

“… this document caused some discussion …we also then wondered whether that changed the essential nature of what we were intending to do from clinical to research, and therefore we asked Professor Walker-Smith, and he was utterly clear about this … that at some stage Dr Wakefield may be wishing to do his research when he was in a position to do so, but that the investigation of the children was entirely a clinical matter, so he very clearly differentiated these two strands. This is a document that was written by a researcher that effectively picked up on a clinical approach that we were doing and appended to that a large superstructure of speculation based around something we had not discussed.”

He further stated in his evidence:

“I discussed with Professor Walker-Smith the nature of what we were to do and he was entirely clear on this: that …these were clinical admissions …I made my decisions in entire good faith …If the Panel decide we made an error of judgment, then we made an error of judgment.”

The Panel considered that his evidence on this matter went to the issue of insight.

The Panel found that all eleven of the Lancet children underwent a programme of investigations for research purposes without Ethics Committee approval and that Professor Murch failed to comply with his duties as a Responsible Consultant, to ensure adequate research governance. However it attached significant weight to the fact that Professor Murch demonstrated that he took the responsibilities of a Responsible Consultant seriously when he brought to an end, in or around late February 1997, the practice of undertaking lumbar punctures for the group of children as a whole because he could not draw any clear inference that a child might have a regressive neurological disorder of sufficient severity or clinical suspicion to make such a procedure reasonable on clinical grounds. He stated in evidence:

“…I took the steps which … led to the termination of 172-96. I felt that on the first occasion I had been called upon to act in my capacity as Responsible Consultant I had indeed acted responsibly, and this had the consequences of preventing the study going ahead.”

Professor Murch’s involvement with the project was subsidiary to, and more limited than, that of Dr Wakefield and Professor Walker-Smith. He had sought and obtained guidance and reassurance as to the nature of the study from two senior respected colleagues: Professor Walker-Smith and Dame Sheila Sherlock, Emeritus Professor of Medicine at the Royal Free Hospital, eminent in her field, whom, the Panel heard, “many senior academics would turn to for guidance and advice.” Further, Professor Murch knew that Professor Walker-Smith had confirmed his view on the clinical justification for the investigations in a letter dated 11 November 1996 to Dr Pegg, Chairman of the Ethics Committee.

The Panel accepts that in all the circumstances, Professor Murch’s actions in respect of research governance could not amount to serious professional misconduct.

Regarding the clinical care of the children, the Panel has found that Professor Murch undertook colonoscopies which were carried out in pursuance of a programme of investigations for research purposes on Child 2, 1, 4, 5, 12 and 10. In all but Child 10 this investigation was not clinically indicated. However, notwithstanding that he had a responsibility to ensure that the procedure he carried out was indeed clinically indicated, the Panel acknowledge that in respect of five of the children, 2, 1, 5, 12 and 10, the initial decision to colonoscope had been made by Professor Walker-Smith. The Panel noted that in the case of Child 4, Professor Murch was not the consultant responsible for the child’s admission and therefore his responsibility remained that of a colonoscopist only.

In respect of five of the children upon whom he performed colonoscopies, Child 2, 1, 4, 5 and 12, his conduct was contrary to the clinical interests of that child. He has fully acknowledged his responsibilities as a colonoscopist and said this about what he perceived to be the purpose behind the investigations:

“I think our whole ethos was to try to determine what was causing the illness in the child and to see whether we could do anything about it.”

Professor Murch’s first opportunity to see the children was after they had been admitted into hospital for about ten minutes on the morning of the colonoscopy procedure itself, for which the children had already been rigorously prepared. The Panel accepted Professor Murch’s evidence that, “time for decision making is inevitably pretty limited” and that it would have been impractical to undertake a full assessment of each child again before the colonoscopy. The Panel accepted Professor Murch’s evidence that the pre-colonoscopy assessment would usually involve assessing whether the child was clinically well on the day, that his or her condition had not changed since admission to hospital, and assessing whether the bowel preparation had been administered satisfactorily.

The Panel took into account that Professor Murch had, along with his colleagues, received information from Dr Wakefield of the purported histories of regression and significant bowel problems of the children. They all agreed that colonoscopies were appropriate in the circumstances. Professor Walker-Smith saw a number of the Lancet children in outpatients and took the decisions that they should be admitted into hospital for further investigation whilst Professor Murch did not see any of these children in outpatients nor decide that they should be admitted. He relied on the expertise and judgment of Professor Walker-Smith:

“I had complete faith in Professor Walker-Smith’s diagnostic ability. He was the paediatricians’ paediatric gastroenterologist.”

The reassurance that Professor Walker-Smith gave about the clinical basis for the investigations was also expressed in the application of Project 172-96:

“… in view of the symptoms and signs manifested by these patients, all of the procedures and the majority of the samples are clinically indicated.”

The Panel acknowledged that Professor Murch’s status within the department at the time of events in 1996, was that of a relatively junior consultant and that he would attach significant weight to the opinion he was given by Professor Walker-Smith.

The Panel accepted the expert evidence of Professor Booth, that a colonoscopist would have a low threshold for carrying out a colonoscopy that had been requested by a more senior colleague who had many more years of experience in assessing children. The Panel also accepted that it could not criticise Professor Murch for making an assumption that an investigation was clinically indicated if ordered by Professor Walker-Smith as it is appropriate to “respect the skills and contributions of your colleagues”, as indicated in the 1995 edition of Good Medical Practice.

The Panel concluded Professor Murch acted in good faith albeit it has found he was in error. His actions, although comparable to professional misconduct in respect of undertaking procedures which were not clinically indicated, were mitigated by the fact that he was under a false impression that they were clinically indicated and this could not reach the threshold of serious professional misconduct.

In relation to the Lancet paper, Panel has found that Professor Murch was not a senior author of that paper.

The Panel noted that in the press briefing held at the Royal Free Hospital immediately prior to publication of the Lancet Paper, Professor Murch spoke to the findings. Professor Zuckerman, the Dean of the Royal Free hospital at the time, in giving evidence to the Panel, testified that Professor Murch vigorously presented the view that the findings in this research were not sufficient to advise discontinuation of the MMR vaccine. Professor Murch was also instrumental in the retraction of the interpretation that had been placed on The Lancet article by the media. In dealing with the repercussions of the Lancet paper and their possible impact on public health policy, the Panel considered that Professor Murch behaved professionally and responsibly.

The Panel wishes to point out that it did not use personal mitigation to downgrade what would otherwise amount to serious professional misconduct to some lesser form of misconduct. Nevertheless, the Legal Assessor advised that evidence of potential mitigation might be relevant to the seriousness of the misconduct under examination; and that in this case there is an overlap. The Panel accepted that advice. When considering the issues of probity, honesty, medical ethics, the clinical interests of patients, the approach to research and appropriate clinical standards, the Panel noted from the evidence as a whole, including some of the testimonial evidence, that Professor Murch was regarded as a very cautious, gentle endoscopist. Furthermore, it was not out of the ordinary for him to be involved in a comprehensive set of investigations of complex conditions using an extensive protocol, which was a common method of working within the Department at the Royal Free Hospital.

Taking all of the above into account, the Panel concluded that Professor Murch demonstrated errors of judgement but had acted in good faith and that any professional misconduct on his part, such as his failing in duties of research governance and performing colonoscopies that were not clinically indicated, could not reach the threshold of serious professional misconduct because of the circumstances in which he found himself.

Accordingly the Panel found that Professor Murch is not guilty of serious professional misconduct.

In these circumstances it was therefore not necessary to consider a sanction and Professor Murch is free to continue unrestricted medical practice

Dr. Andrew Wakefield, turning disgrace into publicity.

24 May

The decisions from the General Medical Council on what actions will be taken on Doctors Andrew Wakefield, John Walker-Smith and Dr. Simon Murch for improper actions already found proven in previous hearings. In advance material for his book, even Dr. Wakefield has been stating that he will be struck off the register: “In the pursuit of possible links between childhood vaccines, intestinal inflammation, and neurologic injury in children, Wakefield lost his job in London’s Royal Free Hospital, his country of birth, his career, and his medical license.”

This is one place where I would agree with Dr. Wakefield. The idea that he’s about to lose his license seems a safe enough bet to just admit it as already having happened.

Dr. Wakefield has decided to quite literally defend him self in the court of public opinion, rather than the hearing room. As Mike Stanton points out in Andrew Wakefield’s Farewell, Dr. Wakefield did not call any of the families involved in the his research in his defense. Instead he relies on the rallying cry, “no family has ever complained…”

Brian Deer, in his recent article Weeping wounds of the MMR scare addresses this rallying cry:

Even some of those involved in his research now tell me they have had enough of his antics. “Please let me know if Andrew W has his doctor’s licence revoked,” emailed the father of Child 11. “His misrepresentation of my son in his research paper is inexcusable. His motives for this, I may never know.”

Dr. Wakefield will not appear before the GMC to hear the verdict. Rather, he will be in New York to appear on TV, where Matt Lauer of the Today Show will interview him. This may be the high water mark in Dr. Wakefield’s publicity campaign, which has included direct-to-youtube interviews with Dr. Mercola (whose runs probably the most trafficked medical misinformation website, if I may state my opinion), another made-for-internet interview, and a future interview on internet radio (10pm to midnight). This in addition to his keynote talk at an anti-vaccine rally to be held this week.

He may also be up for the first knighthood ever given out by AutismOne, at least in the wishful thoughts of his supporters.

In other words, he is moving from side show of the autism research community to center ring in his own circus.

Blogging IMFAR: Wrap-Up Notes

23 May

One of the things I wanted to do in blogging about IMFAR, was try to provide a bit of a wrap-up of my experience there in Philadelphia this year. Since it was my first time attending an IMFAR, and I really had no idea what to expect ahead of time, I figured it might be useful to jot down some overall notes retrospectively.

First and foremost, IMAR is a scientific meeting. There is no shortage of introduction to what is out there in current autism research. This began with Wednesday’s pre-meeting press conference. It was there, that the press would learn about several selected abstracts (apparently thought to be worthy of media attention): the University of Rochester’s (Dr. Susan Hyman) negative GFCF study results, the Kennedy Krieger Institute’s (Dr. Brian Freedman) debunking of the 80% divorce rate claim, and others such as, landmark genetic studies, infant sleep fMRI as potential early diagnostic tool in the future, and social/educational intervention strategies that demonstrate the importance of peer involvement. Each of the study authors presenting their work to the press, spent about 5-10 minutes giving the highlights and taking a few questions, but in reality, each presentation was barely a thumbnail sketch of what the research was about and perhaps a minute of discussion about potential real world significance of the findings. You can read more about the items that caught my attention in the press conference at Blogging IMFAR: Opening Press Conference and GFCF Diet Trial Results and Blogging IMFAR: Autism And Divorce Debunked, Among Others.

Following the day of the press conference, IMFAR was off and running, with full daily schedules of presentation sessions, and poster sessions running the majority of the day (one floor below where the presentation sessions were taking place). On one hand, I suppose the science presentations could seem fairly frustrating to many. Like the press conference, the oral sessions presentations are given on a fairly tight schedule, and often contain little more than an introduction, a few minutes of methodology discussion, a quick look at statistical results, and time for one or two questions – then it’s on to the next, which might even be something only very loosely related at times.

For a typical parent, I think it’s quite possible they’d find the whole format approaching “tedious-to-learning” much of the time, with only an occasionally very interesting or very well-presented piece of research. Don’t get me wrong, I wouldn’t want detract from the likely importance of researchers having an open venue to share ideas with each other, but for me, there are only so many shotgun presentations you can listen to, or posters you can look at in one day.

On the other hand, IMFAR is a place where it seems ridiculously easy to get the big picture quickly, and even talk with expert researchers in the field of autism science if you are so inclined. It’s hard not to catch the what of what’s currently taking place in autism research world, as it’s everywhere – in the program, in the posters, and in the discussions. As an example, if one wanted to learn what’s taking place in autism research that’s using brain imaging, whether looking at language response and differences in infant siblings of autistic children, or looking at the potential impact of some specific intervention on brain funtion, researchers studying just those kinds of things are at IMFAR presenting and discussing their research. From what I saw, one can attend the relevant presentations, and then visit with researchers later on – I saw this occur on several occasions, with researchers like Eric Courchesne (University of California, San Diego). “Accessibile” is word that is probably a pretty good way to sum up my general thoughts on the science at IMFAR. while the format can seem very dry, especially to someone like myself (who didn’t arrive with a specific scientific field of interest that I was dying to scout out), the science and the researchers do seem really accessible.

Which brings me to what I thought was an important impression of IMFAR. The scientists really do seem accessible – willing to spend time for those with quesitons, and willing to provide explanation and lay translation where appropriate. On the first full day at IMFAR, I have to admit that I really didn’t know where to start. How was I ever going to explore all the science, and then distill that down to something digestible in size, yet explanatory of the trends in autism science? I was so fortunate to have the opportunity to meet with Dr. David Mandell. Besides being a local Philadelphia researcher, he was the Scientific Program Chair for IMFAR this year. And I could not be more appreciative of the time he gave to me (and LBRB readers), in sitting down to explain the trends in autism research at IMFAR – and he’s probably one of the best possible people to see and understand those trends, as he read every one of nearly a thousand abstracts accepted at IMFAR this year. If you want the inside scoop on the science at IMFAR, as well as an opportunity to simply get to know the thoughtful Dr. Mandell a little better, it can be found at Blogging IMFAR: Excerpts Of An Interview With David Mandell, ScD.

Speaking of thoughtful autism researchers, while at IMFAR, I literally ran into (interrupting his cell phone conversation while on an escalator) Dr. Roy Richard Grinker, professor of anthropology and human sciences, autism epdemiologist, author of the book “Unstrange Minds”, and wouldn’t you know it, a jazz pianist and marathoner too! Dr. Grinker was gracious enough to sit down with me for coffee, and share a little more about why he was at IMFAR with LBRB readers. You can read the interview at Blogging IMFAR: Meet Roy Richard Grinker.

At this point in my notes, we’ve arrived at midday Friday. And it as midday Friday when I see what I consider the most interesting science. As a recipient of a travel/attendance grant (that partially funded my trip to IMFAR) from the Autism Science Foundation, I was also invited to attend their “Science and Sandwiches” luncheon. It might be tempting to think I was attracted simply for the free food, but the sad truth was, that I had eaten a very late breakfast and wasn’t even hungry at the time of the luncheon. During the “Science and Sandwiches” lunch, each of 6 pre-doctoral students presented an overview of their research plans. These are pre-doctoral students who applied, and in turn, the Autism Science Foundation selected, to fund their research directly. They all seemed fairly interesting and unique, ranging from researching social conversation rules among ASD kids and infant emotions measurement, to very specific mouse model genetics/pharmacological experiments, to epidemiology. Yes, epidemiology. It might seem surprising that a young autism science advocacy org like ASF, or anyone for that matter, would fund epidemiology. I can’t help but think that field is already maturing to some degree in the U.S. I thought to myself, other than potential minority underrepresenation, what kind of breakthroughs in scientific understanding could we really get from epidemiology in the U.S.? I mean, we already know that we’re probably finally very close to what is a pretty stable 1 in 100. What else is there?

That’s when we were introduced to Matthew Maenner. Maenner is a pre-doctoral student of the University of Wisconsin, Madison (working under the mentorship of Dr. Maureen Durkin), who proposed, what to me, looks like a very interesting take on autism epidemiology with his research titled, “Phenotypic Heterogeneity and Early Identification of ASD in the United States”. He asked the luncheon group (of what looked like about 60 attendees), about how many possible combinations of the individual DSM diagnostic criterion can result in an ASD diagnosis. You know, if one looks at all the possible permutations of: “(I) A total of six (or more) items from (A), (B), and (C ), with at least two from (A), and one each from (B) and (C )” and the criteria for Asperger’s and PDD-NOS from the DSM IV-R, how many many combinations are there? It turns out there are 616 (I think I wrote that down correctly). He had a fascinating cloud-graph-type illustration of this (there’s probably a good technical term for this), that looked like a spiral galaxy – the point being that diagnostic criteria steer categorization to a shared core, but at the same time, there are numerous arms extending in several directions. He explained how he intended to look at the CDC’s ADDM data to begin to answer questions about the basis for the landscape of real world diagnoses compared to the actual possibilities described within the diagnostic criteria. Like a fool, I assumed that the ADDM data, like much of published autism epidemiology, tended to be focused on fairly simple prevalence, even dichotomous in nature (Autistic – yes/no, Asperger’s – yes/no, PDD-NOS – yes/no, X percent of all ASD’s = Autistic Disorder, etc.). Also, like a fool, I asked about him about this with something to the effect of, “In assuming the CDC’s ADDM data doesn’t have the resolution to go beyond diagnosis results, and into the individual combinations of criteria that result in those diagnoses, how are you going to even look at answering that question your research is about?”. He politely responds, explaining that, in fact, the CDC’s ADDM data does have this resolution. My assumption is way wrong, and this is an “Aha!” moment for me. We have tons of what is probably pretty good data available from the CDC, and it seems, to me, that no one has looked at it in quite this way before now.

So here’s my take on this ASF-funded doctoral student’s proposed research – he may be digging into something much more descriptive and potentially useful to the biological and educational sciences with respect to autism spectrum disorders, than has been done so previously (that I am aware of). If there’s epidemiology that can quantitatively describe the distribution of characteristics that result in ASD diagnoses, biological, and even educational research may have a leg up on being meaningful. As an example, suppose that this epidemiology determines that a certain percentage of ASD diagnoses include selection of the C – 4. “persistent preoccupation with parts of objects”. With real numbers, biological research may have a starting point to evaluate associations of differences in brain structure or function with respect to this characteristic. With real numbers, perhaps the success of specific educational strategies (that take advantage of this specific knowledge) can be meaningfully evaluated with more individualized approaches. Here’s the bottom line as I see it: Matthew Maenner is taking a solid step towards building understanding of the variation that occurs in autism spectrum disorders. It’s possible, if not likely, that his work could contribute to entirely new and much more individualized directions in other autism research. The days of any notion of singularity in etiologic origin of autism are long gone (in favor of complex combinations of numerous factors). Here’s a researcher who, in my opinion, understands that and will take steps towards building real understanding by looking at that distribution of variation. It wouldn’t surprise me in the least if “Matthew Maenner” is a name associated with the more interesting and useful autism epidemiology in the future.

So there you have it. That was my couple of days at IMFAR: an early look at some of the “newsworthy” science, an opportunity to learn much more about current trends in autism research from a hard-working scientist (the IMFAR Scientific Program Chair, Dr. David Mandell), a chance to sit down and chat with a very thoughtful researcher and author (Dr. Roy Richard Grinker), as well as first-hand look at some new research direction in graduate programs. All in all, it was a pretty interesting couple of days.

I’d also like to take just a minute and thank the Autism Science Foundation for partially, yet generously funding my travel (as a parent who blogs) to IMFAR. I had complete freedom to check out and write about whatever I wanted to, and it wouldn’t have been possible without their financial assistance.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Blogging IMFAR: Meet Roy Richard Grinker

22 May

I had a neat opportunity here at IMFAR. Last night, as I was standing on the long escalator that traverses 3 floors from the IMFAR convention area to the lobby below, I glanced backwards to peek at the person behind me who was having a pretty animated conversation on a cell phone. His name tag read, “Roy Grinker”.

He noticed the glance (which was probably more like a bit of a stare, not too inconspicuous I suppose), and politely paused his conversation long enough for me to interrupt, introduce myself, and invite him to coffee this morning. He accepted.

Most LBRB readers will know Dr. Grinker as the author of “Unstrange Minds” and as a professor of anthropology and human sciences at The George Washington University. He continues to conduct autism research, and he has a role (that we’ll learn a little more about in a minute) at IMFAR too.

He arrives to coffee right on time, and is every bit as friendly as he appears in the pictures that often accompany articles about him online. He sits down to chat with me, and LBRB readers, so…

Meet Roy Richard Grinker, PhD

LBRB: Is it correct to say that your interest in autism research is with epidemiology?

RRG: Yes, my focus has been on epidemiology, but also on doing qualitative research on how culture influences the prevalence and recognition and management of developmental disabilities.

LBRB: Tell us a little more about what you mean by how culture influences those things. Is that willingness to diagnose, etc.?

RRG: Well, we don’t know very much, right now, about autism in other places in the world. It’s, at this point, an assumption that the onset, the core symptoms, and the course is universal. We don’t know, because we don’t have data from other cultures. For example, let alone phenotypes, we don’t have prevalence data for any country in the entire continent of Africa, any country in South America, any country in Asia other than Japan (that includes south Asia), and basically, in the international realm of autism research, it’s wide open.

LBRB: So what specifically brings you to IMFAR?

RGG: I came to the meeting this time primarily to meet and talk with people from other countries, where we don’t know much autism. And we have people here from all over the world. The reason that I’m wearing this button…

[He’s wearing a button with the IMFAR name and logo that reads, “DIVERSITY AMBASSADOR”]

…is to be part of IMFAR diversity.

LBRB: International reach?

RRG: International reach. It’s not so much like the American “diversity”, it is international diversity. We reach out to all the different countries, and as an example, there’s one autism researcher here from Nigeria. With this, he knows that I’m interested in meeting him. He can feel comfortable to just walk up and talk to me, or have coffee. There are a lot of people here from other countries who may not know anyone here.

LBRB: So you’re here for that purpose?

RRG: Yes, and to talk with other people at the meeting.

LBRB: Let’s switch gears a little. What about “American diversity”? What’s your take on the science about that, at a meeting like this?

RRG: In terms of diversity, I’m really inspired, inspired because, when a diversity committee meeting was held, there were about sixty people there. Most them are actually in the U.S., working in the U.S., and are interested in the barriers to care, and the obstacles to services within minority communities.

LBRB: That sounds like it could be interesting in and of itself.

RRG: We know that the age of diagnosis for minorities in the United States is significantly higher than the average age of diagnosis for non-minorities, and that means that they’re getting services later.

LBRB: What does the research science say about this?

RRG: Research supports the premise, one, that outcomes are better if interventions are earlier, and two, epidemiologic data supports the findings that African-American and Latino children are diagnosed later, and receive fewer services. There are data (but not published data) that I’m aware of, that show that even Latino children who are insured, don’t always get services as frequently as others. It could be that they were referred, but don’t take advantage of them, or perhaps there are other structural barricades; like they have insurance, but they also have three jobs, or they live far away from the services. We really don’t understand what all the barriers to uptake of care are, in minority populations. One of the projects I’m working on now is an NIMH-funded project to look at early identification of autism in two communities where there are virtually no autism services delivered.

[Dr. Grinker did provide a little more detail about one research project in southwest Florida, among migrant worker families, as well as a project in South Africa, from where he’d recently returned].

LBRB: So these are your real research interests?

RRG: There are three strands to my research. One strand is this work I’m doing in southwest Florida and South Africa. The second strand is the continued work on the prevalence of autism in South Korea, and we hope to report the results soon there, it’s been a long study – nearly thirty thousand children (the denominator in the sample). The third strand is my book writing – I love to write books.

LBRB: Tell us more about “Unstrange Minds”.

RRG: It just came out this week in Portuguese (so it’s available in Portugal and Brazil), and it really means a lot to me to be able to provide a message that people find uplifting. The thing is, that sometimes when people talk about my book, they focus on the argument about epidemic. And I think that’s important, and I spent a lot of time in my book going through the various reasons why autism diagnoses have increased. But, for me the most important part of the book is that it doesn’t present having a child with autism (or relative with autism) as a tragedy, or something that’s horrible and devastating. Rather, it’s a life experience which is distinctive, and can be incredibly rewarding. I take that positive perspective. I’m invited to give talks, occasionally. Sometimes I’ll give a talk somewhere, and I’ll ask why they invited me. Frequently the answer is, “because you’re not angry”. There are plenty of people out there who give public presentations that have to do with their anger – the anger that the community is not answering their questions, the anger that the services aren’t there, anger that their theory of causation isn’t taken seriously. I guess some people just want to hear somebody who’s got a more positive perspective, without being a Pollyanna, and I think that’s what I offered in the book.  To me, that’s the most rewarding thing.

LBRB: Can you give a personal scoop to Left Brain/Right Brain Readers? What do you like to do in your free time? Do you have any hobbies?

RRG: I have two hobbies. Jazz piano – and I’ve played jazz piano since I was very young. I played throughout college and graduate school. I played alumni parties, that sort of stuff. And I actually still work with a really talented guy in Washington, I’m still, you know, “taking lessons”. I started when I was four, I didn’t start jazz at four, but I probably started jazz when I was about 9 or 10. My parents’ apartment building was down the street from a jazz club.

[Grinker went on to explain that he was able to spend a little time at that jazz club (back in that day), and although I didn’t take down all of the names, he quickly rattled through a list of jazz greats (such as Dizzy Gillespie) he was able to meet in his youth].

What about hobby number two? He just finished (and finished well in) the Boston Marathon.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Blogging IMFAR: Exceprts Of An Interview With David Mandell, ScD

21 May

So I set out blog about the first full day at IMAR, and quickly realized I’d bitten off way more than I can chew. I had tons of scribbled notes after attending most of the epidemiology track this morning, perusing the research posters, and listening to some presentations on specific “treatments”, which were essentially, although very different from one another, targeted educational strategies in many cases. There’s just so much at IMFAR, it’s really impossible to provide any great detail about any one thing. The presentations move very quickly, at about 12 minutes each, with 2-3 questions at the end, and it seems like there’s really only time to hear about the “what” the research is about.

 If this were to be successfully blogged with any depth beyond what’s contained in the abstracts (which anyone can view online), it would probably require about 8-10 people, holding more in-depth discusssions with several research teams, just to provide spotty coverage. If you’ve ever heard the complaint that there just isn’t enough autism research taking place, IMFAR is a pretty good example of the fact that such complaint may not be based in reality. So what to do about this?

Since I have the opportunity to be here, and see and hear what’s taking place, what can I provide to readers that can’t be here? Sure, there is a little additional detail provided by the presenting researchers (their abstract presentations often contain slides that are helpful in barely understanding the abstract’s material details), but the truth is, what’s seen and heard here is actually quite similar to exactly what’s in the abstracts. So where to, from here?

I don’t expect everyone to agree, but I think it might be of at least a little value, to simply meet some of the people who are here. And there are some fascinating people here. Perhaps some would find it informative if I (we) have an opportunity to hear from someone who is heavily interleaved with the inside scene of the science of IMFAR? We don’t have to talk all science. Perhaps we could find out more about them. You know? Get to know ’em a little more than we did before.

So, here we go. Meet David Mandell, ScD.

(Incidentally, Sullivan has written about some research that has his name on it here at LBRB).

Dr. Mandell is a researcher himself, and the Associate Director of the Center for Autism Research, at The Children’s Hospital of Philadelphia. He’s also this year’s Scientific Program Chair for IMFAR. Although he has the help and participation of several collaborative teams in varying disciplines in the field of autism research, it’s essentially his responsibility to put together the scientific program that really makes IMFAR what it is this year.

My first-impression, and lay opinion, is that he seems way too young to be as accomplished as he appears to be. Looks can be deceiving though. He’s friendly, yet scientifically earnest. He sits down with me for half an hour, simply to share some of his take on, and enthusiasm for the autism research and IMFAR. I won’t agree with everything he says, but his points are thoughtful, and clearly communicated. Let’s meet Dr. Mandell, and learn a little more about his take on IMFAR along the way, shall we? So that you, dear readers, can share a little in this IMFAR experience with me, and get something that you couldn’t otherwise get from the book of abstracts, let’s chat with David Mandell ScD.

Exceprts of an interview with David Mandell ScD

LBRB: How did you become involved in IMFAR? How did you go from being a researcher to chairing such a large scientific thing like this?

DM: My first IMFAR was in 2001. It was maybe the first or second one, yeah the second, and I was a post-doc. My training was as a psychiatric epidemiologist. I had originally come to the University of Pennsylvania to work on a CDC study to do surveillance – to look at the number of kids with autism, and it was actually at IMAR that one of the keynote speakers set my research agenda for the rest of my life.

LBRB: Who was that?

DM: It was Peter Mundy, who’s now at the Mind Institute (at the University Of Miami before that). There was a lot of talk about screening instruments, and the MCHAT was of great interest to people, and: How early can we recognize these kids? How can we find the ones that we’re missing? And, you know, we are getting better and better at identifying these kids with autism, and the communities in which we’re identifying them, are completely unprepared to meet their needs. And what are we going to do about that?

LBRB: Speaking of identification and missing kids, you’ve done some research with ethnic disparity. Are those missing groups what got your interest in epidemiology? Or, was there other stuff?

DM: I sort of came at it backwards, and I came to autism sort of late. I knew from about the time I was twelve that I wanted to be a child psychologist. I thought that’s what I wanted to do. I had always worked at camps. I worked with underpriveleged kids. I knew I wanted to work with kids, and I was particularly interested in working with kids with emotional and behvioral problems. I spent most of my college years, and after college, working in psychiatric hospital, working with Guatemalan refugee children (preparing them for entry into the public school system), and I worked with adolescents who had psychiatric disorders, and who’d abused substances. And it was at one of my jobs, sort of later in that path, that I was working for a place called the Chidren of Alcoholics Foundation, and I worked developing curricula for professionals who were working with children from addicted families. So, we were developing these programs, we were training teachers in recognizing when there may be problems at home and what to do about it, helping pediatricians address very sensitive topics during the very brief pediatric visit and what to do when they uncover problems. And so we developed these programs, we’d get them published, and I’d go out and I’d do all these trainings, and we’d ask for evaluations, and the evaluations would always come back with, “yes everybody loved the training”. We had no idea if what we were doing was making any difference in any kid’s life. There was no follow-up. There was no evaluation – and I became very interested in evaluation.

LBRB: So, actually measuring results?

DM: Measuring change. How do we know what we’re doing works? Some of the members of our scientific advisory board at the Children of Alcoholics Foundation, who I worked very closely with in developing the curricula, suggested that I go back to graduate school, and they suggested a masters in public health – with a focus on program evaluation (which was my interest).

LBRB: And you said, “sure, why not”?

DM: I applied to schools, and I thought, “that’s great”. All of my essays were about how I was going to take the skills that I learned in the program and bring them back to the front line work that I had been doing. And as it turned out, I couldn’t afford the masters program. It was very expensive and there were no scholarships, but if I switched my application to the doctoral program, and I got in, they would cover my tuition give me a stipend.

LBRB: That seems worthwhile.

DM: Yes. So I ended up in the doctoral program instead of the masters program.

LBRB: So where does your research interest take you today?

DM: So my interests are not very distant from where they were when I started.

LBRB: Epidemiology?

DM: Well, no. Epidemiology is a set of tools. Epidemiology is literally the study of the health and illness, and its distribution in a population. You can do that with any health condition. But, it also teaches a systematic set of tools for evalutating – the association of different variables. Sometimes we think about those variables as risk factors. So there’s a lot of discussion at IMFAR this year about… there’s several studies on, prematurity, and fertility problems, and fertility treatment, and its association with autism. So those are large scale epdiemiological studies. They’re looking at different variables in the population. But you can also use those same tools to look at positive outcomes associated with treatment. So I take that skillset, those tools that you learn in epidemiology and apply them to looking at treatment and other supports that children with autism and their families get, and what the associated outcomes are.

LBRB: You mentioned in yesterday’s press conference that a theme in this year’s research was treatment research beginning to make a real difference. Where do you see that “real difference” translating into everyday life for families or schools?

DM: So let me give you one example. One of the huge challenges we have in the U.S. is that we can’t get insurance companies to pay for treatment for children with autism. The reason the insurance companies give is that treatments don’t have the level of evidence to support them that those insurance companies often require. And the highest level of evidence for them, is a randomized trial. One of the really exciting things about the treatment studies that are being presented here, is a dramatic increase in the number that use randomization as part of their model. And so these are treatment studies, that when published, then become the standard of care. They can be used as a level of evidence to support changes to the decision rules that insurance companies have. And I’m already getting calls from insurance companies about, “How do we think about restructuring and financing, so that we can support these kinds of interventions?” That’s one, I think probably the most obvious real world example.

LBRB: Tell me more about your role with IMFAR? How did you get so involved?

DM: Well, I’m the local boy. So a lot of it is, you know, I’m from Philadelphia, from the University of Pennsylvania…meeting chair and program director..

LBRB: So you were elected this year?

DM: Yeah,  that’s right.

Bob Schultz is the director of the Center For Autism Research, and is the immediate past president of IMFAR, and he had just come from Yale to the Children’s Hospital of Philadelphia, and he’d asked me to be the associate director of the center. He also asked me if I would chair the meeting.

LBRB: It’s a one year appointment?

DM: Yes. I think he saw it as something that would be beneficial to me. But it’s exhausting.

LBRB: I’ll bet. The program is huge.

DM: I read nine hundred and eighty-seven abstracts.

LBRB: You read every abstract?

DM: I read every abstract. You manange the program committee. You manange the reviewers. The people on the program committee are brilliant, and very dedicated to the field. So a huge part of it is via learning from them what’s important in their particular discipline. And the second thing is by reading all the abstracts, you really begin to see the themes that are emerging in the science.

What’s really exciting to me about this IMFAR is that the really exiciting science is happening in between the traditional disciplinary boundaries. So we used to think about there are the genetics ones, and there are the animal models ones, right, and there’s a biological mechanisms in humans one, and there was pharmacological treatment, and there’s behavioral treatment. And then, sort of here over on the side, there’s epidemiology and services research, and policy type stuff. These were very separate tracks, with very little crossover. And now I think the message, or at least one of the messages at IMFAR is that these disciplines have to talk to each other. It’s by collaborating, and it’s by training new investigators who have expertise in at least two of those disciplines where we’re going to see the most exciting science.

LBRB: So this is a huge program. What are you going back to? What’s next for you after IMFAR?

DM: So I have two things. My particular interest is how you take evidence-based interventions and implement them in communities so that they are effective and they sustain. My group is presenting tomorrow on our study, the autism structural methods study. We partnered with the school disctrict of Philadelphia, we trained teachers in 50 classrooms in evidence-based interventions and in looking at outcomes for kids. So part of my research agenda is expanding that, expanding it up and down the age span, and also thinking about what the next steps are.

LBRB: That sounds heavily educational. Do you consider that autism “treatment”?

DM: I call it what the funder needs it to be called. So this sort of gets to the other half of my research. The other half is actually going much more biological. Which is, we have kids who are phenomenal responders to the behavioral intervention, and then we have kids who aren’t. Why? What is changing in their brains as a result of the intervention; because any behavior you observe has a correlate in brain function. If we can find those correlates, like Eric Courchesne was presenting, it is going to help us understand how to better target our behavioral strategies, and it’s going to give us earlier markers… So I want to connect the behavioral interventions to the biology. Because I think ultimately what we’re going to see, is that we will find systems in the brains of children with autism that are not functioning that way we would hope they might, and that we might have biological interventions (like medication). A medication may help correct that system, but that child still has to learn. And so I think the most exciting interventions are going to come from pairing mecdications with the different strategies for learning. So that’s the other direction my research is going.

LBRB: Does any of this leave you any free time? What do you like to do on a Saturday? Do you take time off from research?

DM: I take my kids to dance class on Saturdays. And, I fence.

LBRB: That’s not something you hear too often…

DM: That’s my evening activity.

LBRB: I don’t know anything about fencing, is that good exercise?

DM: Yeah, it is good exercise. But the thing about academics in general is that you never turn it off. I definitely keep a notebook by my bed. You wake up in the middle of the night with an idea, and it gets written down. You never really turn it off, but like with any job, you have to make time for yourself and your family. I think people do that with varying degrees of success.

LBRB: Are you pretty good with that?

Pretty good. I have a six year-old and a four and a half year-old. They go to bed at seven.

LBRB: Wow! That’s early. You’ll have to share your secret with me for that?

DM: My secret is my wife.

Dr. Mandell had much more to share about what he considers success in autism research, and explained personal reward from succcess and  small change at local Philadelphia schools.  I’d really have loved to share more, but learned a valuable lesson during writing this post – I really suck at transcription. I hope you enjoyed hearing from Dr. Mandell though. I know enjoyed hearing his take on the IMFAR science in person, and I thank him for making a little time for LBRB.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

NIH Workshop on Nonverbal School-Aged Children with Autism

20 May

The U.S. National Institutes of Health recently held a workshop on nonverbal school-aged children with autism. The sponsoring Institutes were:

National Institute on Deafness and Other Communication Disorders

National Institute of Mental Health

Eunice Kennedy Shriver National Institute of Child Health and Human Development

The scope of the workshop was:

In April 2010, the National Institutes of Health (NIH) convened a multidisciplinary workshop to discuss the state of the empirical knowledge about, and research opportunities regarding, the substantial subgroup of children with autism spectrum disorders (ASD) who have not developed functional verbal language by five years of age. The discussants reviewed the current state of scientific knowledge, highlighted critical gaps in our knowledge, and identified research opportunities to address knowledge gaps. A series of presentations and group discussions addressed the three major topics of the workshop.

The topics included

Topic 1: Who are these children? What do we know about their developmental trajectories?

Topic 2: How can we assess their skills and knowledge across different domains, with special reference to those abilities relevant to language acquisition (e.g., verbal comprehension, sensory and motor skills, apraxia)?

Topic 3: What treatments/interventions are effective in improving spoken language and communication in these children (augmentative and non-augmentative methods)?

and

Research Gaps and Opportunities

The workshop summary is very interesting. It reinforces what is probably an obvious point: any language, no matter how small, is a big leap forward. Any verbal language by age 5, echolalic or otherwise, is a big indicator of verbal language gains later. Apraxic kids with autism are very diverse, just as all autistic people comprise a very diverse group.

Most of the apraxic/autistic kids who will become verbal start in the 5-7 age bracket. There is an example of a child attaining verbal language at age 13.

Dr. Cathy Lord discussed the characteristics which are related to whether an apraxic/autistic child becomes verbal:

* Intellectual disability
* Little desire or motivation to communicate
* Poor socialization scores (Vineland)
* Presence of challenging behaviors
* Impaired joint attention
* Impaired imitation of sounds and movements
* Specific language and other motor factors

Dr. Barry Gordon discussed the characteristics of those children who transition from verbal to nonverbal nonverbal to verbal:

# Age (most children who started speaking were between 5 and 7)—none over age 13.
# Some conceptual and semantic abilities.
# Strong motivation to communicate via oral speech.
# Specific training in the formation of sounds and words. Such training needs to be very intensive (often ABA approaches) and highly flexible, taking into consideration individual child abilities.
# With intervention, 70% acquired production of words, only 30% developed phrase speech

What is not noted is how many children acquired production of words without intervention. This is not an experiment I would propose (at all), but it would be good to have that baseline number to compare to this 70% number. Obviously, it would be good to see what interventions work and with which groups of children. There was discussion of various methodologies (ABA, PRT, PECS, as well as augmentative communication methods)

One point made, and this is very important, there is very little research that concentrates on the nonverbal school-age group. My guess is that there is even less research on nonverbal adults.

This is something that needs to change. I appreciate that the NIH held this workshop, but unless research funding is allocated to apraxic/autistic kids, there will continue to be huge gaps in the knowledge base.

Dr. Andrew Wakefield to join Dr. Arthur Krigsman in clinic independent of Thoughtful House?

20 May

Dr. Andrew Wakefield gives an interview in a recent story in the Austin Statesman, Censured doctor says he’ll resume autism research in Austin.

Dr. Wakefield is the primary doctor behind the idea that the MMR vaccine causes autism. His initial paper suggesting this link has been retracted by The Lancet, and the General Medical Council ruled that he was dishonest in his research efforts and showed a callous disregard for his subjects. He expects to lose his license when the GMC finishes the second phase of their action against him next Monday.

According to Dr. Wakefield, this will be the “final effort by the mainstream medical establishment to silence him and stop his research.”

I am at a loss for how this could silence him or stop his research. Dr. Wakefield resides in the United States and has for some time. Even when he was doing research in the United Kingdom, he was not working in a capacity to use his medical license (at least to my understanding).

The interview continues–

“Now that they have come to their determination, I will make absolutely sure the truth comes out,” Wakefield said. “I think I am in a position to encourage people to take a more serious look at the kinds of projects I am considering,” such as researching the long-term health of children who have been vaccinated and those who have not been vaccinated.

Again, I am at a loss. Why has Dr. Wakefield waited until he lost his license, something which he does not use, to make sure that the truth comes out? I would also question whether he is in a position to be taken seriously.

Dr. Wakefield is further quoted:

“Vaccine safety is built upon the confidence of the public u2026 and I’m not prepared to (compromise) that,” he said Wednesday, adding that he hopes people will read the book and “make up their own minds about what is real and what isn’t real.”

Dr. Wakefield is not prepared to compromize the public’s confidence in vaccines?

I am, yet again, at a loss for words.

On the subject of Dr. Wakefield’s future efforts:

Wakefield said he resigned from Thoughtful House so he wouldn’t be a distraction from its work. He said Thoughtful House was getting away from a focus on gastrointestinal issues and autism. Krigsman posted a message to former Thoughtful House patients saying their records would be forwarded to him, and they could see him at a “new, independent” office in Austin where Wakefield said he would do research similar to what he did at Thoughtful House.

Blogging IMFAR: Autism And Divorce Debunked, Among Others

20 May

Autism And Divorce Debunked

Does anyone really believe that whopper of an urban-legend that goes something like this – “The divorce rate among families with autistic children is 80%!”?

Sure, many people do believe it, and I wrote about this topic when the Easter Seals Living with Autism survey results were released a little over a year ago, here. You probably won’t be surprised, but the often repeated 80% statistic looks like pure online mythology. Sullivan has the early notes here. And some of the more mainstream media have the story as well.

As pointed out previously by other LBRB commenters, and in addition to the Easter Seals “Living With Autism” survey, there is some existing science on the subject that essentially shows that autistic children are no more likely to live in divorced households than non-ASD children.

– Montes & Halterman, Psychological Functioning and Coping Among Mothers of Children With Autism: A Population-Based Study, Pediatrics 2007;119;e1040-e1046

– Montes & Halterman, Characteristics of school-age children with autism in the United States, J Dev Behav Pediatr. 2006;27:379–385

Well, now there’s a much larger research study heading for publication. I had the opportunity to sit down with Brian Freedman PhD, from the Kennedy Krieger Institute’s Center For Autism And Related Disorders in Baltimore, MD (the study’s lead author).

When asked about how he became interested in pursuing researching the 80% divorce rate urban legend, he explained that as a result of hearing concern about family stressors and divorce from families that he works with, he wanted to find the original source of the statistic. Freedman went on to explain that he set out locate a scientific source for the statistic, but that the science to support it just wasn’t out there.

On the topic of working with families regularly, Freedman also shared that, “an important consideration in providing information to families, is that the information provided is correct, and evidence-based”.

The results of the study were stated as follows at the press conference:

The weighted unadjusted percentage of children with ASD belonging to a family with two married biological or adoptive parents was 64%, as compared to 65.2% for children who do not have an ASD.

In fact, in addition to finding “no consistent evidence of an association between a child having an ASD diagnosis and that child living in a traditional vs. non-traditional family”, the abstract from Freedman’s research goes on to say that once variables of co-occurring psychiatric disorders are controlled for,
“our results show that a child with an ASD is slighty more likely than those without ASD to live in a traditional household”.

How does that translate to the 80% divorce rate myth? It blows it out of the water. The 80% divorce rate myth predicts that only 20% percent of autistic children would live with married parents (or at least it allows for that perception). Based on this research, reality would appear to dictate that 64% of autistic children live with two married parents, pretty much just like non-ASD kids.

Interestingly, and although no research is ever free of any limitations, this seems to be a large, and probably fairly population-representative study. The data for children originated with the National Survey for Child Health (Blumberg et al., 2009), which is not only very recent, it’s inclusive of over 77,000 children aged 3-17.

What? Low levels of “quality indicators” on autism websites?

Really?

Okay, so no one is going to be surprised by this one, at least LBRB readers aren’t anyway. An abstract presented at today’s press conference details research by a team at the Yale Child Study Center.

122.001 Pressence of Quality Indicators On Autism Websites. B. Reichow*1, J. Halpern2 and F. R. Volkmar3, (1)Yale Child Study Center, (2)Fordham University, (3)Yale School of Medicine

See page 452 of the online abstract book for the rest of the study detail, but I’ll save you some time, and share with you that if autism websites in general were being graded on the presence of some selected objective indicators of website quality, the majority would be getting an “F”. Most people probably wouldn’t eat in restaurants with failing health grades, why would they apparently seek information about autism from the internet? Perhaps that “why”, or even the implied assertion on my part that this is where people do get information about autism, will have to go undiscussed. The fact is, the websites that are out there (that turn up for very generic searches in popular search engines), are really lacking when it comes to quality indicators.

Results: On average, the 164 websites analyzed for this study suggested autism related websites contained less than 6 of 8 quality indicators. Nearly 1 in 5 websites offered a product or service for purchase, and/or promoted a miracle cure. These websites were also, on average, some of the least likely websites to contain the quality indicators.

As I was hoping to learn more about just what the website “quality indicators” were, I was fortunate enough to have a chance to sit down and chat briefly with study’s lead author, Brian Reichow. He shared some of the important ones with me, and I think most readers would agree with the importance of their presence on trusted websites – things like: clear authorship (who’s written the website’s content), the use of references (citing sources), website currency (out of date could be a problem), clear disclaimers with respect to expertise and advice, reading level, and presence of a clear feedback mechanism.

Yep, I do wonder if Left Brain/Right Brain was picked up in those top 100 searches conducted by these researchers, and yep, I wonder how LB/RB fared by their actual criteria.

Other interesting press conference items.

There were, of course, more abstracts presented than the two that interested me the most which I’ve described here. I’ll have to simply point them out with some very brief notes and abstract pages noted.

Kids learn better from their peers Page 17

104.004 Social Inclusion of Children with ASD at School: Effects of a Randomized Controlled Treatment Study. C. Kasari*, University of California, Los Angeles

Dr. Kasari shared some interesting results, that will probably seem like a no-brainer to many. It’s good to have some supporting science though. Autistic kids targeted along with peers for what looks to me like “inclusion intervention” (such as specific paired-friend playground activities during recess), did better on some specific social measurements than kids targeted for intervention, but not along with peers.

Sleep fMRI as a diagnostic tool? Page 125

107.002 Abnormal Brain Response to Language Stimuli in Sleeping Infants and Toddlers with ASD. L. T. Eyler*1, K. Pierce2 and E. Courchesne2, (1)University of California San Diego, (2)University of California, San Diego

Admittedly, I find this fascinating. There is emerging brain imaging and a tool that may lead to the ability to diagnosis of autism very early – like infant early. This particular research group has identified a potential abnormality in the laterality of language in autistic children, as identified by the use of a newly developed sleep fMRI. Of course this raises a million potential ethical quesitons, but it seems possible that understanding potential language acquisition issues could lead to the development of new adaptive and perhaps helpful early teaching/parenting/family strategies.

Tomorrow’s program

In case anyone wants to follow along in the program (see around page 12 of the PDF), I’ll be trying to attend the following tomorrow:

8:15-9:30 Keynote (Mouse Models…)

10:00-12:00 Oral Session Epidemiology 1

1:30-3:30 The Ethics of Communicating Scientific Risk

4:00 Tom Insel – IACC Upate

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

U. Rochester researchers discuss diet-autism trial

20 May

We’ve already blogged this story a couple of times on LeftBrainRightBrain. The GFCF diet is not effective as an autism treatment. When I found these videos on the University of Rochester website, I thought they would be interesting to many readers.

Obviously, the Rochester team knew this study would be getting publicity

They discuss the methodology and show pictures of some of the snacks. They discuss how the GFCF diet is non trivial to implement. They recommend (strongly) working with a good nutritionist.

Clinical Trial of the GFCF diet in children with GI disorders

19 May

The gluten free, casein free diet is not beneficial to all autistics. Not even most. But the question remains, how about a small subset? What about autistics with gastrointestinal (GI) conditions?

A Study to Assess the Role of a Gluten Free-dairy Free (GFCF) Diet in the Dietary Management of Autism Associated Gastrointestinal Disorders

I find the phrasing “Autism Associated Gastrointestinal Disorders” a bit odd. Are they trying to say that the GI disorders are linked to the autism? Since there is no group as yet shown to have GI disorders linked to autism, this would seem a tricky criteria to implement. How will they, for example, chose those who have GI disorders “associated” with autism vs. those who have autism and GI disorders which are not associated?

Ah well, best not to get tied up in those details.

Here are the inclusion criteria:

Inclusion Criteria:

* Informed consent / Assent, as applicable must be signed prior to executing any study related procedure
* Children, male or female, 2 to 17 years old (inclusive)

Confirmed diagnosis of ASD according to the diagnostic measures:
o DSM-IV Symptom Checklist
o Autism Diagnostic Observation Schedule(ADOS)&/or Autism Diagnostic Interview Revised(ADI-R)within 18 months prior to entry into the study
* Able to consume at least 2 cartons of the study drink daily

Subjects must present with a current history of at least two of the following persistent GI symptoms as confirmed by the study physician:
o Diarrhea, as characterised by three or more loose stools a day for at least 8 out of 14 days
o Constipation as characterised by less than 3 bowel movements per week, for at least a 2-week period
o Esophageal reflux, as characterised by 3 or more episodes of regurgitation per day on 10 out of 14 days
o Abdominal pain manifested as pain after eating or self injurious behavior on at least 8 out of 14 days
o Suspected food allergy which is confirmed by a physician, as characterized as a recurrent reaction or association with specific foods

I think that last one is key–suspected food allergy with recurrent reactions to specific foods. Of course such conditions should be treated, and would likely respond to changes in diet.

I also question “Abdominal pain manifested as pain after eating or self injurious behavior on at least 8 out of 14 days”. How is self-injurious behavior a manifistation of abdominal pain? Yes, I can see how a child with abdominal pain could be self injurious, but I can also see that many children with self injurious behaviors could have them as a result of other conditions.

Here are the exclusion criteria:

Exclusion Criteria:

* Children with a history of anaphylaxis to dietary milk and wheat proteins
* Children with severe concurrent illness
* Children who are prescribed systemic steroids
* Children currently receiving chelation therapy, hyperbaric or antifungal treatment within 1 month of entry into the study and during the study period.
* Children with a confirmed diagnosis of celiac disease
* Subjects who have previously tried dietary elimination of casein and gluten for at least 1 month period and failed to demonstrate a response by parent perception
* Children who are unable to consume at least 2 cartons of the study drink daily

It strikes me a bit odd that children who have been on “The Diet” in the past but didn’t respond would be excluded while those whose parents who tried “The Diet” and perceive benefit would be included. But, I guess this is a treatment study, not a “demonstrate that GI complaints exist in autistic children” so that selection bias may be OK. It will be interesting to see to what level parents’ perceptions are accurate in these cases.

The real question I have is, why? Why do this study? Why focus on autistics? If a person, child or adult, autistic or not, has a food allergy and reacts to those foods, of course take them out of the diet.

But, not all of the children in this study will have suspected food allergies. Any two of the criteria above are required for inclusion in the study. But, I’m still stuck with “why autistics”. Why not study children, any children, who have GI complaints and see if they respond to the GFCF diet? Or, why not study both autistics and non-autistics and shed some light on the assertion that GI disorders are associated with autism?

The study is being conducted at Massachusetts General Hospital with Dr. Tim Buie as the investigator. Anyone interested in participating can find the contact information on the Clinical Trials announcement.

← Older Entries
Newer Entries →