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It’s DSM 5 day

18 May

Yes, the day has arrived that the DSM 5 (the Diagnostic and Statistical manual) is released by the American Psychiatric Association. The DSM codifies the traits which make up, among many other things, an autism diagnosis. There was a great deal of controversy of the past few years about the way the DSM would handle autism. A major change was to move away from the “spectrum” of autism disorders (ASD) to a single autism diagnosis with a severity scale. Since eligibility for services is often tied to an autism diagnosis–such as insurance, special education and state disability services–many groups were concerned that the new DSM would leave specific groups out. One can find discussions of how those with Asperger syndrome will not be included in the new autism, how those with intellectual disability will not be included and how those with PDD-NOS will not be included.

Yesterday, Molecular Autism included three papers on the DSM 5.

The first introduces the other two: DSM-5: the debate continues by Fred R Volkmar and Brian Reichow.

Here is the abstract (full text free online):

We are fortunate to have invited commentaries from the laboratories of Dr Cathy Lord and Dr Fred Volkmar offering their perspectives on the new Diagnostic and Statistical Manual of Mental Disorders (DSM)-5 criteria for the autism spectrum. Both Lord and Volkmar are world-leaders in autism and in the autism phenotype and both have been very involved in the DSM: Volkmar was the primary author of the DSM-IV Autism and Pervasive Developmental Disorders section, and Lord has been equally active in the Neurodevelopmental Disorders Workgroup of DSM-5. As such, there are none more qualified to comment on what has been potentially gained or lost in the transition from the fourth edition to the fifth edition of this bible of psychiatric classification and diagnosis.

The first contributed paper is Autism in DSM-5: progress and challenges

Here is the abstract (and full text is available free online):

BACKGROUND:
Since Kanner’s first description of autism there have been a number of changes in approaches to diagnosis with certain key continuities . Since the Fourth edition of the Diagnostic and Statistical Manual (DSM-IV) appeared in 1994 there has been an explosion in research publications. The advent of changes in DSM-5 presents some important moves forward as well as some potential challenges.

METHODS:
The various relevant studies are summarized.

RESULTS:
If research diagnostic instruments are available, many (but not all) cases with a DSM-IV diagnosis of autism continue to have this diagnosis. The overall efficiency of this system falls if only one source of information is available and, particularly, if the criteria are used outside the research context. The impact is probably greatest among the most cognitively able cases and those with less classic autism presentations.

CONCLUSIONS:
Significant discontinuities in diagnostic practice raise significant problems for both research and clinical services. For DSM-5, the impact of these changes remains unclear.

The second contributed paper is DSM-5 and autism spectrum disorders (ASDs): an opportunity for identifying ASD subtypes by Rebecca Grzadzinski, Marisela Huerta and Catherine Lord.

The abstract is below and the full text is online.

The heterogeneity in the clinical presentations of individuals with autism spectrum disorders (ASDs) poses a significant challenge for sample characterization and limits the interpretability and replicability of research studies. The Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5) diagnostic criteria for ASD, with its dimensional approach, may be a useful framework to increase the homogeneity of research samples. In this review, we summarize the revisions to the diagnostic criteria for ASD, briefly highlight the literature supporting these changes, and illustrate how DSM-5 can improve sample characterization and provide opportunities for researchers to identify possible subtypes within ASD.

The DSM 5 is big news, and relatively big business. As discussed on the American Public Media program Marketplace, the DSM has a major effect on how insurance companies reimburse for various treatments–if you don’t have the diagnosis, you may not get reimbursed for the treatment. Also, the DSM 5 itself makes the APA a significant amount of money, raising questions about whether the DSM was pushed forward too soon (hence the title of the Marketplace spot: How much is the DSM-5 worth?)


By Matt Carey

Studies ‘supporting’ Andrew Wakefield

7 May

It is 15 years since Andrew Wakefield first hypothesised a link between the MMR vaccine and autism in children, mediated by an inflammatory bowel condition (subsequently labelled ‘autistic entercolitis’). Over this period Dr Wakefield and his supporters have cited a range of studies which are claimed to ‘verify’, ‘replicate’ or ‘support’ his MMR-autism theory. Here is the most recent list:

‘Here is a list of 28 studies from around the world that support Dr. Wakefield’s research:
1.The Journal of Pediatrics November 1999; 135(5):559-63
2.The Journal of Pediatrics 2000; 138(3): 366-372
3.Journal of Clinical Immunology November 2003; 23(6): 504-517
4.Journal of Neuroimmunology 2005
5.Brain, Behavior and Immunity 1993; 7: 97-103
6.Pediatric Neurology 2003; 28(4): 1-3
7.Neuropsychobiology 2005; 51:77-85
8.The Journal of Pediatrics May 2005;146(5):605-10
9.Autism Insights 2009; 1: 1-11
10.Canadian Journal of Gastroenterology February 2009; 23(2): 95-98
11.Annals of Clinical Psychiatry 2009:21(3): 148-161
12.Journal of Child Neurology June 29, 2009; 000:1-6
13.Journal of Autism and Developmental Disorders March 2009;39(3):405-13
14.Medical Hypotheses August 1998;51:133-144.
15.Journal of Child Neurology July 2000; ;15(7):429-35
16.Lancet. 1972;2:883–884.
17.Journal of Autism and Childhood Schizophrenia January-March 1971;1:48-62
18.Journal of Pediatrics March 2001;138:366-372.
19.Molecular Psychiatry 2002;7:375-382.
20.American Journal of Gastroenterolgy April 2004;598-605.
21.Journal of Clinical Immunology November 2003;23:504-517.
22.Neuroimmunology April 2006;173(1-2):126-34.
23.Prog. Neuropsychopharmacol Biol. Psychiatry December 30 2006;30:1472-1477.
24.Clinical Infectious Diseases September 1 2002;35(Suppl 1):S6-S16
25.Applied and Environmental Microbiology, 2004;70(11):6459-6465
26.Journal of Medical Microbiology October 2005;54:987-991
27.Archivosvenezolanos de puericultura y pediatría 2006; Vol 69 (1): 19-25.
28.Gastroenterology. 2005:128 (Suppl 2);Abstract-303

http://healthimpactnews.com/2013/new-published-study-verifies-andrew-wakefields-research-on-autism-again/

Which of these studies supports a link between MMR and autism? None of them. Which studies support a link between MMR and inflammatory bowel disease? None. In fact, none of these studies focuses on MMR: the term ‘MMR’ is not included in any of the titles.

One study (no 6) by Vijendra Singh, published in 2003, claims a link between measles virus and autism. According to virologists in London, Singh’s methodology was suspect and the evidence for the specific ‘anti-MMR’ antibody he identified was ‘not credible’(see Michael Fitzpatrick, MMR and Autism: What Parents Need To Know, p90).

Several studies claim to show an association between ‘autistic enterocolitis’ and autism. Of these (nos2, 3, 4, 9, 18, 19, 28) all but two feature Dr Wakefield as a co-author. Study no 9 is the work of Wakefield collaborators Arthur Krigsman and Carol Stott, published in a journal whose editors include Wakefield and Stott. Study no 28 is the work of Wakefield’s former Royal Free colleague Federico Balzola. The study by Dr Lenny Gonzalez, (no 27) a former collaborator with Wakefield at his Thoughtful House clinic in Texas, published in Venezuela, reports the extraordinary findings of autistic enterocolitis in 100% of 45 children with autism, and in 66.66% of 57 ‘developmentally normal’ controls. Apart from Wakefield and his former or current colleagues, no other researchers in the world have confirmed the existence of ‘autistic enterocolitis’ in children with autism.

Some studies suggest the presence of gastrointestinal disorders other than ‘enterocolitis’ in association with autism. These include upper gastrointestinal conditions, such as gastritis and oesophagitis (no 1, Horvath;no 10, Galiatsatos; no 20, Torrente); coeliac disease or malabsorption (no 12, Genuis;no 16, Walker-Smith;no 17, Goodwin); microbial factors other than measles (nos14, 15, 24, 25 – the Finegold, Bolte, Sandler team; and no 26 –Parracho and colleagues at Reading). Most of these studies feature small numbers of cases and two (nos 16,17) were published more than 40 years ago.In study no 10, Polymnia Galiatsatos and colleagues in Montreal, Canada report the cases of two young adults, one with colonic inflammation, the other with gastritis. Nikolov and colleagues at Yale(no 13) simply report on ‘gastrointestinal symptoms’ in association with autism.

Other studies suggest immune or autoimmune dysfunction in association with autism: Jyonuchi (nos7,8) and Singh (nos5,11). One study (no 23, Shinohe) focuses on abnormal glutamate metabolism in adults with autistic spectrum disorders. These studies do nothing to advance the vaccine-autism hypothesis.

Given that supporters of Dr Wakefield often claim that his work has been ‘independently’ replicated, it is worth pointing out that Wakefield himself is a co-author on a quarter of the studies listed here (2,3,4, 18,19, 21,22). Others (9, 20, 27,28) feature former Royal Free team members(Ashwood, Torrente, Furlano, Balzola), or subsequent collaborators (Krigsman, Stott, Gonzalez).
Those who, like me, have been following this sad story over the past 15 years, will have noticed that several authorities formerly cited in support of Wakefield’s theory seem to have fallen by the wayside.

In the early days of the MMR controversy, Wakefield often cited the studies of Rosemary Waring and Patricia D’Eufemia in support of his notion of a ‘leaky bowel’. His colleague John Walker-Smith claimed that a letter from Aderbal Sabra published in the Lancet in 1998 (about children with food allergies and ADHD) provided a ‘great public vindication’ of the work of the Royal Free team (see MMR and Autism, p143-4). Tokyo physician Hishashi Kawashima’s claims to have identified measles virus in children with autism were widely promoted – but soon discredited. In Sunderland, retired pharmacy lecturer Paul Shattock, an ardent Wakefield supporter, attracted widespread publicity for his claims to have identified distinctive urinary peptides linking MMR and autism, but his research was never published.

The most widely cited research supposedly supporting Wakefield came from his Dublin collaborator John O’Leary (published in 2002 in separate papers with Uhlmann and Shiels). This was discredited by the evidence of Stephen Bustin in the Omnibus Autism Proceedings in the USA in 2009 (see Stephen A Bustin, Why There Is no Link Between Measles Virus and Autism, DOI: 10.5772/52844).
Another study by Balzola, based on the use of the technique of ‘capsule endoscopy’ in a single (adult) case has also been dropped. It was rapidly followed by a report from another member of his team of ‘acute small bowel perforation secondary to capsule endoscopy’.

Other forgotten Wakefield supporters are the South Carolina immunologist Hugh Fudenberg, and the Florida preacher and vitamin salesman Jeffrey Bradstreet, whose dubious practices were exposed in Brian Deer’s Channel Four documentary in 2004. The father and son team of Mark and David Geier, notorious for their promotion of the ‘Lupron protocol’ of chemical castration and heavy metal chelation as a treatment for autism as well as for their shoddy researches, have also been dropped from the list of supportive researchers.

Another widely quoted ‘study’ supposedly supporting Wakefield was a poster presentation by Stephen Walker (working in collaboration with long-standing Wakefield ally Arthur Krigsman) at the IMFAR meeting in Montreal in 2006.These preliminary, provisional, unconfirmed, non-peer-reviewed findings – of measles virus in bowel biopsy specimens – in an uncontrolled study (which does not mention MMR) were widely reported – and enthusiastically acclaimed by Dr Wakefield. Walker himself disclaimed the interpretation that his work supported any link between measles and autism. This study has never been published.

In conclusion, after 15 years, we are offered 28 studies, none of which supports the MMR-enterocolitis-autism hypothesis. It is not surprising that over this period Wakefield has failed to win the support of a single paediatrician, paediatric gastroenterologist, child psychiatrist or autism specialist in England. Surely it is time to call a halt?


By Michael Fitzpatrick

Mike Fitzpatrick calls Andrew Wakefield’s bluff. Wakefield moves goalposts

17 Apr

As recently noted here at Left Brain/Right Brain, Andrew Wakefield asked to debate someone about the MMR vaccine. In specific, he wrote:

The more light that shone on this subject by way of informed, balanced debate, the better. I am offering to debate any serious challenger on MMR vaccine safety and the role of MMR in autism, live, in public, and televised.

Dr Michael Fitzpatrick wrote in Andrew Wakefield: return of the wicked witch, Wakefield’s MMR-autism nonsense had a baleful influence on public health, but he doesn’t bear sole responsibility for recent measles outbreaks. that he would take Mr. Wakefield’s challenge.

As both a GP and a parent of an autistic son who had followed the destructive consequences of Wakefield’s campaign over the past 15 years, I for one would welcome the opportunity to challenge his baleful influence. Are you ready for a debate now, Andrew Wakefield?

As you might surmise from the wording above, Dr. Fitzpatrick has previously attempted to debate Mr. Wakefield and offered to engage in a full debate:

Wakefield has subsequently restricted his public appearances to conferences of sympathetic parents, anti-vaccination activists and promoters of quack autism therapies. When I asked him a question from the floor at one such conference in Bournemouth in February 2007, he simply refused to answer, deferring to another platform speaker. When I offered to debate with him at a follow-up conference in March 2009, the organisers refused.

How has Mr. Wakefield responded?

What I’m suggesting is a formal scientific debate in public in front of an audience that is televised. And specifically Dr David Salisbury I would like to debate you because I believe you are at the heart of this matter. I believe the decisions taken by you and by your committee, the Joint Committee on Vaccination and Immunisation, lie at the heart of this matter.

Yes, having had his bluff called, Andrew Wakefield moves the goalposts. He won’t take on Mike Fitzpatrick. He won’t take on “any serious challenger”. Only Dr. David Salisbury.

In addition to lacking integrity, Mr. Wakefield now shows that he lacks courage.

Mike Fitzpatrick is a physician. He is an autism parent. He has written two books on autism: MMR and Autism: What Parents Need to Know and Defeating Autism: A Damaging Delusion. Hard to find a more “serious challenger”.

Hundreds of children are suffering from measles in the U.K.. This isn’t the time for empty offers of debate. This isn’t the time for publicity stunts. It’s time to own your mistakes and do what you can to fix the problems you helped create. Do you have that courage, Andrew Wakefield?


By Matt Carey

Thinking Person’s Guide to Autism: An Interview with IACC Member Dr. Matt Carey

4 Apr

I am way behind on blogging. So far behind that I didn’t even mention here an interview I did with the Thinking Person’s Guide to Autism: An Interview with IACC Member Dr. Matt Carey. It was a pleasure to work with the TPGA people. If you don’t know them, take a look at their blog. Their book is the classic “book I wish someone gave me when my kid was first diagnosed”.

The IACC will be holding a meeting next Tuesday. Also, the IACC recently submitted a letter to U.S. Department of Health and Human Services Secretary Sebelius recommending public and private insurance coverage of early behavioral interventions for children with autism spectrum disorder.


By Matt Carey

note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

What has become of Autism Science Digest?

26 Dec

Autism Science Digest was an effort by AutismOne to publish their take on autism science in a magazine format for a general audience. AutismOne is best known for their annual parent convention which focused largely on alternative medicine and vaccine causation.

It is about the time that AutismOne should be publishing their speaker list for next year’s conference so I checked their website. For those interested, the speaker list reads like most past lists.  Andrew Wakefield, the former researcher who promoted the idea that the MMR vaccine causes autism, will speak. So will Keri Rivera, who last year gathered much criticism for promoting forcing disabled children to ingest bleach or undergo bleach laced enemas. Interestingly, neither Mark nor David Geier are on the list. The Geiers have been frequent speakers at AutismOne and other venues favorable to their failed ideas about mercury in vaccines causing autism, as well as bizarre proposals that using drugs to shut down sex hormone production can be used to treat autism.  While not a regular at AutismOne, Luc Montagnier will not make a return visit.  Last year Dr. Montagnier brought the prestige of a Nobel Laureate to the convention. While his presence was touted strongly by supporters of AutismOne, Dr. Montagnier’s ideas were lacking the scientific rigor one might expect from a Nobel laureate (to put it mildly). Of course Jenny McCarthy returns, perhaps to tell us all once again that those who don’t follow her ideas wish for our children to remain disabled so we can bask in the sympathy of our acquaintances.

That all said, while perusing the AutismOne website I noted that the cover for their “Autism Science Digest” hadn’t changed since my last visit.  That was some time ago. The cover informs readers about the then upcoming 2012 AutismOne convention (last April), so my interest was piqued and I checked the page for the “Digest” and found this announcement: Autism Science Digest is temporarily unavailable.

One is left wondering how “temporary” temporary is in this case. Autism Science Digest was launched in August 2011 so the lifespan (should temporary=permanent) seems a bit short.


By Matt Carey

Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting

17 Dec

Slate has picked up Emily Willingham’s article on the Newtown shootings, as Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting. The URL says a lot:

http://www.slate.com/blogs/xx_factor/2012/12/17/asperger_s_and_newtown_school_shooting_autistic_does_not_mean_violent.html

Autistic does not mean violent.

It is very heartening to see large media outlets picking up on this message to counter speculation which started with the unconfirmed report that the shooter was autistic.

The article originally appeared as Autism, empathy, and violence: One of these things doesn’t belong here on Dr. Willingham’s blog EmilyWillinghamPhD.com and at the Thinking Person’s Guide to Autism.


By Matt Carey

TPGA’s Position on Autism Organizations That Support Autistic People

9 Oct

The Thinking Person’s Guide to Autism has published a five point list of principles they feel organizations that support autistic people must adhere to. This can be found on their site as “TPGA’s Position on Autism Organizations That Support Autistic People“.

I was going to copy them here, but that is basically the full article. I encourage readers to take the time to check out this list and follow the discussion at TPGA.


By Matt Carey

Autism Spectrum Disorders: What Every Parent Needs to Know

12 Sep

For some time now I’ve been looking for books to recommend. Kev Leitch (who founded Left Brain/Right Brain) gathered a good collection of books. One of my favorites has been The Thinking Person’s Guide to Autism, which has been discussed here at Left Brain/Right Brain a few times. It is a book I wish I had when my kid first was diagnosed. It is a collection of essays on various topics by autistics, parents and professionals. Another type of book I’ve been looking for is one by professionals. Specifically medical professionals. One I will get to soon is Making Sense of Autistic Spectrum Disorders: Create the Brightest Future for Your Child with the Best Treatment Options. Another came out just recently, and that is the subject of this discussion: Autism Spectrum Disorders: What Every Parent Needs to Know.

The book is published by the American Academy of Pediatrics (AAP). It is edited by Alan I. Rosenblatt MD FAAP and Paul S. Carbone MD FAAP. Both have extensive experience with special needs children. The book has an extensive list of contributors, including parents. I need to go through it more thoroughly to see if they include autistic voices as well.

The authors’ description of the book is:

From autism and Asperger’s syndrome through pervasive developmental disorders, this authoritative reference from the leading publisher in pediatric health care examines how autism spectrum disorders (ASDs) are defined and diagnosed and reviews the most current behavioral and developmental therapy treatments available. Through this evidence-based guide, which reflects the new diagnostic thinking from the American Psychiatric Association, parents and caregivers will learn about the symptoms and the incidence of ASDs, screening tools, the roles of complementary and alternative medicine, and what to expect as these children grow into adolescence and beyond. They will also gain insight into how to tap into educational resources and community services and how to access care. In addition to the detailed findings and expert advice, real-life stories included in each chapter help diffuse the isolation many parents experience and offer inspiration and support.

Autism Spectrum Disorders: What Every Parent Needs to Know is very accessible–well written and short sections one can read in a reasonable amount of time. My own experience was that I did not really have the time nor the attention span to read thick books cover-to-cover soon after my kid’s diagnosis. A book such as this which is thorough but also can be read either in whole or in parts in a reasonable amount of time is a good place to start. It’s about $10 on Amazon.

The book starts with the basics (what are autism spectrum disorders?) goes through some of the big questions (e,g what causes autism spectrum disorders?), behavioral and educational options, medications, complementary and alternative medicine (CAM), and practical strategies for the parent.

It is difficult to navigate all the sources of information that come at a parent who has just found out his/her kid is autistic. Not all of that information is good. I certainly wish I had this book when our kid was diagnosed.

Autism Spectrum Disorders: What Every Parent Needs to Know comes out October 1st. For the record, I asked the AAP for a review copy to discuss in advance of publication.


By Matt Carey

Following Ezra

17 Aug

I happened on Following Ezra by chance. It was available as an electronic book from my library. I downloaded it and started reading it and was very happy I had.

Following Ezra depicts itself as: What One Father Learned about Gumby, Otters, Autism and Love from His Extraordinary Son. The author, Tom Fields-Meyer, has written for years including for People Magazine, so he knows how to tell a story.

An often quoted incident from the book involves when he first heard his son was autistic:

When Tom Fields-Meyer’s son Ezra was a toddler and showing early signs of autism, a therapist suggested that the father allow himself time to mourn.
“For what?” he asked.
The answer: “For the child he didn’t turn out to be.”

Mr. Fields-Meyer didn’t feel like mourning (which is a rather extraordinary take on his own). His memoir covers about a decade. A decade of discovery and growth for his son and for himself. It’s a memoir, not a preachy message book. But the underlying theme Mr. Fields-Meyer has is one of acceptance and

Here is an excerpt I bookmarked:

I understand the instinct so many parents have to fight battles, trying to nudge children towards more mainstream pursuits. I gauge our other sons’ progress by the kinds of standard measurements most modern mothers and fathers use: We have watched Ami’s evolution through the ever-larger trophies he collects at the end of each baseball and soccer season, a series of student government positions, and friendships; Noam rises through the ranks at the Karate studio, each new belt and patch marking another level of accomplishment, and makes his way through the Suzuki violin book, showing ever-increasing ability and focus. Tracking Ezra’s advancement is different. With each passing month and year, he grows more singular.

At some point I realize that is precisely the way to build a relationship with my son: through the trains, the Gumby figures, the endless trail of red. Instead of seeing his obsessions as traits to change, Shawn and I come to view them as opportunities to build a bond–a quirky, unpredictable, whimsical bond, to be sure, but a strong one. Instead of lamenting that we can’t have an ordinary conversation with our son about the Dodgers or sitcoms or what happened in school that day, we join him. We follow his lead.

Sometimes that brings me to unexpected places. I find myself sending my hard-earned dollars via Paypal to a guy in Missouri selling decadesold clay-animated characters, or standing in line at the Target story, my shopping cart filled with red jerseys and pajamas. Sometimes I pause and wonder whether we are doing the right thing.

Over time, though, I come to realize a reward: Ezra understands that another human cares about what he cares about. Slowly, over time, our connection grows, and so does his potential to have other relationships with people. relationships based on something more than Gumby.

Like I wrote above, it isn’t a book about acceptance, but a book about a family that incorporated acceptance into their lives from an early point. There is a great deal of misinformation about acceptance (it’s “giving up”, for example), that it’s good to have a book like this to point people to put a real-life picture to the idea.

I’ll admit that I’m only about 1/2 way through the book. Given the way that my life often takes me away from side projects–blog posts, finishing books (what was I thinking buying the Shelby Foote book on the Civil War?) and the like–I thought it good to get something out now. The book only seems to be getting better the more I read.


By Matt Carey

Books and Movies

16 Aug

In the process of moving from being self-hosted to being hosted by wordpress.com, we lost the list of books that Kev had compiled over the years. I’ve started rebuilding that list and will try to go through some new books in posts in the near future. The page Books and Movies is already up and will grow with time. Feel free to offer recommendations or to remind me of books that were on the previous list.