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Prevalence and Correlates of Autism in a State Psychiatric Hospital

24 Aug

I’ve said it before: I really like David Mandell’s work. He and his team take on some very important and tough questions. I am very concerned about the lack of information on autistic adults. We don’t know an accurate prevalence. Without study ongoing into the needs of autistic adults, those of us with autistic children will face a

That’s why I like studies like this one: Prevalence and Correlates of Autism in a State Psychiatric Hospital.

This study estimated the ASD prevalence in a psychiatric hospital and evaluated the Social Responsiveness Scale (SRS) combined with other information for differential diagnosis. Chart review, SRS and clinical interviews were collected for 141 patients at one hospital. Diagnosis was determined at case conference. Receiver operating characteristic (ROC) curves were used to evaluate the SRS as a screening instrument. Chi-squared Automatic Interaction Detector (CHAID) analysis estimated the role of other variables, in combination with the SRS, in separating cases and non-cases. Ten percent of the sample had ASD. More than other patients, their onset was prior to 12 years of age, they had gait problems and intellectual disability, and were less likely to have a history of criminal involvement or substance abuse. Sensitivity (0.86) and specificity (0.60) of the SRS were maximized at a score of 84. Adding age of onset <12 years and cigarette use among those with SRS 80 increased specificity to 0.90 but dropped sensitivity to 0.79. Undiagnosed ASD may be common in psychiatric hospitals. The SRS, combined with other information, may discriminate well between ASD and other disorders.

For reference:

Sensitivity relates to the test’s ability to identify positive results.
Specificity relates to the ability of the test to identify negative results.

Identifying autistic adults is not easy. Prevalence studies are far more difficult than when working with students. But Prof. Mandell is out there, trying to find autistic adults. In this case, he found that in a given psychiatric hospital, about 10% of the patients were autistic. He is calibrating instruments (the SRS together with correlates like smoking, age-of-onset, ID) to provide for a fairly direct screening tool.

This is one type of work that needs to be done. I’m glad that Prof. Mandell’s group is out there doing it, but I hope that more groups pick this up in the future.

Interviews from IMFAR: Alex Plank brings the conference to the public

18 May

One of the unexpected joys of attending the IMFAR conference this year was meeting Alex Plank of Wrong Planet. I plan on writing more about Alex soon, but for the moment, let me bring you some of the interviews he did. His team is the same one that brought us the press conference. That was no small effort. They were up most of the night getting that out so fast. As you will see, Alex takes videography very seriously. As such, I would recommend playing these full screen or going to YouTube and playing them in a larger format that is afforded by out column size. It’s quality work. I love the way he’s working with various locations in these interviews.

John Robison at Imfar

David Mandell at IMFAR 2011

Clara Lajonchere, VP of Clinical Programs at IMFAR

Peter Bell of Autism Speaks – IMFAR Interview in San Diego

Geraldine Dawson Interview

Video of IMFAR Press Conference (with thank to WrongPlanet)

13 May

Alex Plank is at IMFAR with a video team and they taped the press conference. Mr. Plank runs the Wrong Planet website (where you can see this and many other great videos).

The press conference was just over 1 hour. You can skip around to find parts that may interest you.

Here is a rundown of the press conference, and the slides:

Introduction 1: Dana Marnane of Autism Speaks
Introduction 2: David Amaral of U.C. Davis
Panelist 1: Antonio Hardan of Stanford slides
Panelist 2: Irva Hertz-Picciotto of U.C. Davis (slides)
Panelist 3: David Mandell of U. Penn slides and more slides
Panelist 4: Eric Courchesne of U.C. San Diego. (slides)

Autism Science Foundation announces Pre & Post Doctoral Training Fellowships

21 Mar

The Autism Science Foundation has announced their pre-doctoral and post doctoral fellowships for this year. The press release is quoted below.

This is an area of research funding I approve of–supporting new researchers. The more new, good people we can pull into the field, the better off autism research will be in the long term.

Pre & Post Doctoral Training Fellowships Announced

(March 21, 2011-New York, NY)–The Autism Science Foundation, a not-for-profit organization dedicated to funding autism research, today announced the recipients of its annual pre and post doctoral fellowships. In all, $220,000 in grants will be awarded to student/mentor teams conducting research in autism interventions, early diagnosis, biomarkers, and animal models. This funding level represents a 22% increase over last year’s training fellowship grants.

“We are thrilled to be increasing our funding in only our second year of operations, and to be supporting such high quality grants”, said Autism Science Foundation co-founder Karen London. “Outstanding research is the greatest gift we can offer our families. We are so grateful to all our donors and volunteers who have come together to support autism research.”

The following new projects have been selected for funding:

Post Doctoral Fellowships:

* Jill Locke/David Mandell: University of Pennsylvania
Implementing Evidence-Based Social Skills Interventions in Public School Settings
* Portia McCoy/Ben Philpot: University of North Carolina
Ube3a Requirements for Structural Plasticity of Synapses
* Haley Speed/Craig Powell: UT Southwestern University
Identifying Impairments in Synaptic Connectivity in Mouse Models of ASD
* Elena Tenenbaum/Stephen Sheinkopf: Women & Infants Hospital andBrown University
Attentional Distribution and Word Learning in Children with Autism

Pre-Doctoral Fellowships:

* Jessica Bradshaw/Robert Koegel: University of California at Santa Barbara
Prelinguistic Symptoms of Autism Spectrum Disorders in Infancy
* Christie Buchovecky/Monica Justice: Baylor College of Medicine
Identifying Genetic Modifiers of Rett Syndrome in the Mouse

Read more about these studies.

The Autism Science Foundation is a 501(c)3 public charity that provides funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. Learn more at http://www.autismsciencefoundation.org

disclaimer–I have accepted support from ASF to attend IMFAR 2011./

Girls less likely to be diagnosed with autism than boys

6 Dec

A recent study out in the Disability and Health Journal shows that girls are more likely than boys to remain undiagnosed. The study, by David Mandell‘s group at the University of Pennsylvania, evaluated data from the Autism and Developmental Monitoring Network (ADDM). This is the same group that collects and analyzes data for the CDC’s autism prevalence studies.

Each ADDM study concentrates on children from a specific birth year. In this case, children born in 1994. They review records (medical, educational or both as available) to determine which children meet the criteria for autism. Some children already have a diagnosis of autism in their records. Other children are determined to be autistic via the ADDM review.

Prof. Mandell’s group found that for those with existing diagnoses at the time of review, girls and boys were similar in terms of average age of diagnosis and first age of evaluation. However girls were more likely to be undiagnosed (medical or educational) at the time of the ADDM review.

Here is the abstract.

Sex differences in the evaluation and diagnosis of autism spectrum disorders among children.

Giarelli E, Wiggins LD, Rice CE, Levy SE, Kirby RS, Pinto-Martin J, Mandell D.

Division of Biobehavioral Health Systems, University of Pennsylvania School of Nursing, Philadelphia, PA 19104, USA.
Abstract

BACKGROUND: One of the most consistent features of the autism spectrum disorders (ASDs) is the predominance among males, with approximately four males to every female. We sought to examine sex differences among children who met case definition for ASD in a large, population-based cohort with respect to age at first developmental evaluation, age of diagnosis, influence of cognitive impairment on these outcomes, and sex-specific behavioral characteristics.

METHODS: We conducted a secondary analysis of data collected for a population-based study of the prevalence of ASD. The sample comprised 2,568 children born in 1994 who met the case definition of ASD as established by the Autism and Developmental Disabilities Monitoring (ADDM) Network for ASD surveillance. Children who had a history of developmental disability and behavioral features consistent with the DSM-IV-TR criteria for autistic disorder, Asperger’s disorder, and Pervasive Developmental Disorder-Not Otherwise Specified in existing evaluation records were classified as ASD cases via two paths: streamlined and nonstreamlined. Streamlined reviews were conducted if there was an ASD diagnosis documented in the records. Data were collected in 13 sites across the United States through the ADDM Network, funded by the Centers for Disease Control and Prevention.

RESULTS: Males constituted 81% of the sample. There were no differences by sex in average age at first evaluation or average age of diagnosis among those with an existing documented chart diagnosis of an ASD. Girls were less likely than boys to have a documented diagnosis (odds ratio [OR] = 0.76, p = .004). This analysis was adjusted for cognitive impairment status. In the logistic model, with the interaction term for sex and cognitive impairment, girls with IQ of 70 or less were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.70, 95% confidence interval [CI] = 0.50-0.97, p = .035). Boys with IQ greater than 70 were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.60, 95% CI = 0.49-0.74, p < .001). This finding (less likely to have a documented diagnosis) was also true for girls with IQ greater than 70 (OR = 0.45, 95% CI = 0.32-0.66, p < .001). Girls were more likely to have notations of seizure-like behavior (p < .001). Boys were more likely to have notations of hyperactivity or a short attention span and aggressive behavior (p < .01).

CONCLUSIONS: Girls, especially those without cognitive impairment, may be formally identified at a later age than boys. This may delay referral for early intervention. Community education efforts should alert clinicians and parents to the potential of ASDs in boys and girls.

Diagnosis of autism occurs much later than it should among Medicaid-enrolled children

4 Aug

This from a recent study by Prof. David Mandell’s group. The abstract is below:

Psychiatr Serv. 2010 Aug;61(8):822-9.
Age of diagnosis among medicaid-enrolled children with autism, 2001-2004.

Mandell DS, Morales KH, Xie M, Lawer LJ, Stahmer AC, Marcus SC.
Abstract

OBJECTIVE: This study examined child- and county-level factors associated with age of diagnosis of autism among Medicaid-enrolled children and the change in age of diagnosis over time. METHODS: National Medicaid claims from 2002 to 2004 were used to identify age of diagnosis and characteristics of children younger than ten years old with a diagnosis of autism (ICD-9 codes 299, 299.0x, or 299.8x). These data were linked to county-level education and health care variables. Linear regression with random effects for state and county was used to examine associations between these variables and age of diagnosis. RESULTS: A total of 28,722 Medicaid-enrolled children newly diagnosed with an autism spectrum disorder were identified. Their average age of diagnosis was 64.9 months. Adjusted average age of diagnosis dropped 5.0 months for autistic disorder and 1.8 months for other spectrum disorders during the study period. Asian children were diagnosed earlier than children in other racial or ethnic groups, although these differences were much more pronounced for other spectrum disorders than for autistic disorder. Children eligible for Medicaid through the poverty category were diagnosed earlier, on average, than children who were eligible through disability, foster care, or other reasons, although this difference decreased over time. Children in large urban or rural counties were diagnosed later than children in small urban or suburban counties. CONCLUSIONS: Findings showed that diagnosis of autism occurs much later than it should among Medicaid-enrolled children, although timeliness is improving over time. Analyses suggest that most of the observed variation is accounted for by child-level variables, rather than county-level resources or state policies.

PMID: 20675842 [PubMed – in process]

The age of diagnosis in California for the general population was 3 years by 2000 (falling from 6 in 1992) according to a recent paper by Bearman’s group at Columbia. Why are medicaid children diagnosed later?

I find it odd that children on medicaid due to poverty are diagnosed earlier than children “eligible through disability, foster care, or other reasons”. Naively, I would expect the opposite: that children already identified with a disability would be under greater scrutiny and more likely to receive evaluations to determine an ASD diagnosis.

Much more can be said about this, but I will stop with “Diagnosis of autism occurs much later than it should among Medicaid-enrolled children”. This is just wrong. We as a society should take better care of our most vulnerable.

Autism Science Foundation’s interviews with IMFAR researchers: David Mandell

8 Jul

INSAR, the International Society for Autism Research hosts the the largest autism research conference: IMFAR, the International Meeting for Autism Research. 1700 people attended, largely from the research community. The program book has nearly 50 pages of researchers. It’s big.

This year’s conference was held in Philadelphia in the United States. The people heading the organization of this year’s conference were Program Chairs David Mandell and Manny DiCicco-Bloom and Meeting Chairs, Jennifer Pinto-Martin and Susan Levy.

The Autism Science Foundation has a strong presence at the conference. They were sponsors of the conference and they held luncheons for the graduates students which the ASF is supporting. In addition, the ASF sponsored a number of stakeholders to attend the conference. One of these stakeholders, D’oC, blogged about the conference here on LeftBrainRightBrain.

The Autism Science Foundation took the opportunity to interview a number of the researchers at IMFAR. Those interviews are now up on YouTube. I thought I would blog some of these interviews. Given that Prof. Mandell was one of the Program Chairs and gave an overview of the conference, I decided to start with his interview:

Prof. Mandell discusses the new studies that are coming out. Amongst the subjects: how there is a shift to groups crossing regular boundaries of genetics, biology and behavior are related; how treatment research is moving beyond the randomized control trial methods targeting all autistic types to targeting subgroups; and how there is much research on young autistics in school settings. Groups are moving beyond the early genetics studies which merely identify “hot spots” in the genes to trying understand what the genes do. He gives the example where groups of autistics with the same genetic differences give similar results in how their brains work, as detected through functional MRI.

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: 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.)

Autism-study doctor facing grant probe

13 Mar

A story in the Philadelphia Inquirer today sheds some light on the situation involving Dr. Poul Thorsen.

Background for anyone who needs it: Dr. Thorsen is a Danish researcher who is co-author on a number of important studies. These include epidemiological studies on vaccines and autism. Dr. Thorsen did this work at the University of Aarhus, and has since left. There is an investigation ongoing apparently implicating Dr. Thorsen in a possible shortfall of about US$2M from the University.

Dr. Thorsen’s work was funded largely by the CDC. He started working for Emory University before leaving Aarhus (and this is a point of contention with Aarhus, as they state that Dr. Thorsen was not allowed a joint full-time appointment). He was also listed as adjunct faculty at Drexel University. Dr. Thorsen has also left Emory and his adjunct appointment at Drexel.

There has been a lot of speculation and discussion on this for the past week or so. The story has broken into the mainstream media, who have been good enough to get us some facts to work with. I have sent many emails over the past week, and almost all have been unanswered. I finally heard from one group in Denmark yesterday, and they to are unaware of the details of this case.

Today’s Philadelphia Inquirer has a story about Dr. Thorsen, Autism-study doctor facing grant probe by Jeff Goldstein:

A Danish scientist involved in two major studies that debunked any linkage of vaccines to autism is suspected of misappropriating $2 million in U.S. grants at his university in Denmark.

He also notes that Dr. Thorsen’s appointment at Drexler was unpaid, and he resigned it this week. (Drexel University is local to Philadelphia, where Mr. Goldstein works). Also of note, Dr. Thorsen was working with Emory University for about 6 years, much of that part time. The complaint by Aarhus involves him working “full time” in both Aarhus and Emory. This may go to the fact that it was pretty clear that Dr. Thorsen was at both Emory and Aarhus from his publication record. The complaint may not be about working in both places but, rather, having changed to full time status at Emory.

Mr. Goldstien notes that some groups have “seized” on these allegations to discredit the studies Dr. Thorsen worked on:

Anti-vaccine groups have seized on the allegations to contend that scientific studies disproving the vaccine link to autism are wrong. Those groups have long argued that thimerosal, a preservative in some vaccines, can cause autism, as can the MMR vaccine for measles, mumps, and rubella.

“I think it is quite significant,” said Dan Olmsted of the Age of Autism. “I think someone allegedly capable of ripping off his own university by forging documents from the CDC is capable of pulling off anything.”

And this is where the this situation becomes very important. If these allegations are true, does this negate the studies Dr. Thorsen worked on?

Mr. Goldstein addresses this with quotes from Mr. Olmsted (above) and people at the CDC and Denmark.

“Poul Thorsen had absolutely no influence on the conclusions regarding this paper,” wrote Mads Melbye, head of the division of epidemiology at the Statens Serum Institut in Copenhagen and senior author of the study, in response to e-mailed questions.

“Thorsen was not actively involved in the analysis and interpretation of the results of this paper,” Melbye said.

The second study, published in Pediatrics in 2003, examined 956 Danish children diagnosed with autism from 1971 to 2000. It concluded the incidence of autism increased in Denmark after thimerosal was removed from vaccines.

Kreesten Meldgaard Madsen, the lead author, said Thorsen played a minor role.

“Dr. Thorsen was not in a position to change or compromise the data,” Madsen wrote. “Dr. Thorsen was part of the review cycle, but never very active in giving input. Dr. Thorsen never had access to the raw data nor the analysis of the data.”

I doubt these statements will mollify Mr. Olmsted’s readers.

In a piece on WHYY (a public radio station in Philadelphia) has a story, Investigation of autism researcher’s conduct sparks controversy.

Dr. David Mandell of the Center for Autism Research agrees the studies Thorsen worked on should be reviewed. But he doesn’t believe the research has been compromised. He noted that Thorsen was not a lead researcher, the studies used government data, and they were peer-reviewed. This view is echoed in a statement from the Centers for Disease Control, which partly funded the vaccine research.

So, where does this leave us? With a lot more questions than answers still. One question in my mind at least is whether Dr. Thorsen is accused of transferring money to his own use or if he is accused of transferring money to fund his research at Emory when he left Aarhus. That aside, no matter what happens from here, this will be used to imply that vaccine-autism research (and not just that by Dr. Thorsen) is performed by corrupt individuals and should not be trusted.

Assume that the allegations are real. I can state that I am very angry at that possibility. I do not like dishonest people. I do not like dishonest researchers.

Mostly, I don’t like the fact that this will be (and already is being) used to put doubt in a lot of people’s minds about the role of thimerosal and MMR and autism. $2M is a small sum compared to the amount of suffering that will go on as this breaths a little life back into that movement.

My guess is that some readers are now ready to blame me of bias, of believing that Dr. Thorsen’s studies are accurate when I should be questioning everything he did. Let’s ignore the statements by his collaborators that Dr. Thorsen didn’t have access to the data to manipulate. Let’s just stick with the fact that the studies Dr. Thorsen worked on agree with the results of multiple other studies. The surprising outcome would be if on review the conclusions changed.

I am sure this story isn’t going away. And it should not. We need to know and we deserve to know what the details are here. Beyond that, I am sure that this will be forever in the lore of the vaccines-cause-autism community and will be used to convince ever more people to join.

For that, whoever is responsible for this mess, I am angry.