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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?)

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By Matt Carey

Comment on: A Danish population-based twin study on autism spectrum disorders.

12 May

There has been much discussion of twin studies in autism research for a long time. The reason is that if is found that “identical” (monozygotic) twins are often both autistic, that points to genetics as a major influence on the development of autism. For many years it was thought that this rate, the concordance, was about 90%. In other words, if one child is autistic, 90% of the time the other child is autistic. This was based on a number of older, small studies. More recently, a relatively large study showed a lower concordance: about 77% for ASD and 60% for autism. From this the authors claimed that the genetic contribution to autism risk was lower than previously thought, and that the environmental contribution was higher (about 55% environmental contribution).

A study just out from Denmark claims a concordance more in line with the older studies–95%. In A Danish population-based twin study on autism spectrum disorders., the authors write:

Genetic epidemiological studies of Autism Spectrum Disorders (ASDs) based on twin pairs ascertained from the population and thoroughly assessed to obtain a high degree of diagnostic validity are few. All twin pairs aged 3-14 years in the nationwide Danish Twin Registry were approached. A three-step procedure was used. Five items from the “Child Behaviour Checklist” (CBCL) were used in the first screening phase, while screening in the second phase included the “Social and Communication Questionnaire” and the “Autism Spectrum Screening Questionnaire”. The final clinical assessment was based on “gold standard” diagnostic research procedures including diagnostic interview, observation and cognitive examination. Classification was based on DSM-IV-TR criteria. The initial sample included 7,296 same-sexed twin pairs and, after two phases of screening and clinical assessment, the final calculations were based on 36 pairs. The probandwise concordance rate for ASD was 95.2 % in monozygotic (MZ) twins (n = 13 pairs) and 4.3 % in dizygotic (DZ) twins (n = 23 pairs). The high MZ and low DZ concordance rate support a genetic aetiology to ASDs.

This study is relatively small with only 13 “identical” twin pairs. Also, the concordance for “fraternal” (dizygotic) twins is relatively low at 4.3%. Sibling concordance is estimated at about 20%, so 4.3% raises a bit of a red flag. Of course the recent larger twin study is not without some controversy itself.

In the end, I doubt this new study will have much influence on the online parent community discussions (which are in themselves far from the most productive or important discussions on the topic. Just the apparently most vocal). We are left with there being some genetic contribution and some environmental contribution to autism risk. In other words, it remains important to put effort into both areas of research.

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By Matt Carey

Greg Simard pleads guilty in attempted murder of autistic boy

6 May

This is one of those stories that is so awful as to be unbelievable. The full story is at Greg Simard pleads guilty to attempted murder. An autistic boy was in a residential placement. On one of his last days before going back to his family full time, a worker in the placement took the autistic boy out into the woods and beat him and left him to die. There are also questions of sexual abuse. The assailant’s explanation:

“He’s a drain on society. His life is meaningless. It’s no big deal,” Greg Simard, 24, told police. “I did it for my country. . . . Um, maybe someone should come and shake my hand. . . a few pats on the back. . .”

Simard discussed the event itself:

“I just grabbed him by the hand and said come for a walk. . . . I hope he’s dead. He’s a drain on society,” Simard told Det. Amanda Pfeffer.

Questioned about the boy’s underwear being torn off, Simard said, “I didn’t sexually assault a retarded kid. That’s disgusting.”

I can’t express enough the sorrow that I feel for the child and his family. And I offer them my apologies as I make this point:

This is one big reason why people fight to destigmatize disability. The biggest reason is because it is just the right thing to do. But when the message is put out in public, over and over, about the disabled as burdens on society and somehow worth less than non-disabled citizens, people like Greg Simard are listening. And there are many more who won’t go to such an extreme, but still will accept and act on dehumanizing rhetoric.

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By Matt Carey

IMFAR study: No Differences in Early Immunization Rates Among Children with Typical Development and Autism Spectrum Disorders

3 May

IMFAR, the International Meeting For Autism Research, is going on this week.  In preparation for the meeting, I posted the titles of a number of studies being presented.  The full abstracts are now available.  One might venture to guess that for a segment of the online parent community, this study (sadly) may get the most attention: No Differences in Early Immunization Rates Among Children with Typical Development and Autism Spectrum Disorders

It is not one of the very large population based epidemiological studies which have many thousands of participants.  But it is a good sized study with confirmed diagnoses.

As the abstract states, the difference immunization rates is not significant, with the autistic kids rate reported as slightly lower. One child was unimmunized, and that child is autistic.

One vaccine with significantly different uptake rates is the Hepatitis B vaccine, with autistic kids receiving this at a lower rate than the typically developing kids.  The HepB vaccine is one that gets a great deal of focus by those claiming vaccines causes an autism epidemic, with claims of much higher autism risk among those vaccinated with HepB. If this were true, one would expect the autistic group to show a higher uptake of this vaccine.

All in all, as the authors note, this is not a study about causation but the results do not lend support to the idea that vaccines are associated with higher autism risk. The study was undertaken by the MIND Institute, which is generally respected by the groups who promote the idea that vaccines are associated with autism.

K. Angkustsiri1,2, D. D. Li3 and R. Hansen2,4, (1)UC Davis MIND Institute, Sacramento, CA, (2)UC Davis Medical Center, Sacramento, CA, (3)M.I.N.D. Institute and Department of Psychiatry and Behavioral Sciences, University of California Davis Medical Center, Sacramento, CA, (4)The M.I.N.D. Institute, University of California, Davis, Sacramento, CA

Background: The relationship between vaccines and autism spectrum disorders (ASD) has been of great interest to families and health providers.

Objectives: This study compares the immunization practices of preschoolers with ASD and typical development (TD).

Methods: Immunization records were abstracted from 240 (161 ASD, 79 TD) children between the ages of 24.1-54.4 months participating in the Autism Phenome Project from April 2006 to August 2011. Seventy-eight percent were male. We compared immunization rates for the vaccines required by the State of California for children ages 18 months to 5 years (3 doses of Hep B, 4 DTAP, 4 Hib, 4 PCV, 3 IPV, and 1 MMR). Of note, there was a national HIB vaccine shortage from 2007-2009. Varicella was not included due to the possibility of naturally acquired immunity. 

Results: Immunization rates in ASD children were slightly lower than in TD (see Table 1), but this difference was not statistically significant, with the exception of Hep B, where 91.3% of children with ASD had received 3 doses compared to 98.7% of TD (p=0.024). These rates were at or above those reported in the 2011 National Immunization Survey (NIS). One (0.6%) ASD child had not received any immunizations. The national rate for children who received no immunizations was 0.8%. 

Conclusions: Despite the lack of evidence supporting any causal relation of vaccines to ASD (IOM, 2011) many parents remain concerned and some choose to delay or avoid vaccines. Immunization rates in preschoolers with ASD in our sample were generally lower than TD, although there were no statistically significant differences except for Hep B.  Our study, although not designed to specifically address a causal relationship, does not support an association between vaccines and ASD. In most cases, these immunization practices represent behavior during the first 18 months of life prior to receiving an ASD diagnosis. Further study looking at differences in vaccine acceptance during the 4-6 year booster period is warranted, as having an ASD diagnosis may affect parents’ attitudes towards future immunization.

ASD (n=161) TD (n=79) p-value 2011 NIS
Hep B 147 (91.3%) 78 (98.7%) 0.024 91.1%
DTAP 150 (93.2%) 78 (98.7%) 0.110 84.6%
Hib 107 (66.5%) 48 (60.8%) 0.386 shortage 2007-09
PCV 134 (83.2%) 66 (83.5%) 0.128 84.4%
IPV 149 (92.5%) 78 (98.7%) 0.066 93.9%
MMR 151 (93.8%) 75 (94.9%) 0.99 91.6%

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By Matt Carey

Andrew Wakefield: Now, what about that debate?

30 Apr

Today we have another article by autism parent and general practitioner Michael Fitzpatrick. In his article, Andrew Wakefield and Vaccine Safety, Dr. Fitzpatrick discusses how Mr. Wakefield’s claims about the MMR are without merit.

Mr. Wakefield has been in the news lately as Wales faces a major outbreak of measles. Mr. Wakefield is facing criticism for the predicted results of his claims about the safety of the MMR vaccine, and his suggestion that the MMR vaccine be set aside. Recently Mr. Wakefield put out a challenge to debate “any serious challenger” on the safety of the MMR vaccine.

Dr. Fitzpatrick is a general practitioner in London, autism parent and author of the book MMR and Autism: What Parents Need To Know. Dr. Fitzpatrick accepted Mr. Wakefield’s debate challenge, but Mr. Wakefield has not responded.

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By Matt Carey

Autism Science Foundation hosts live chat with David Amaral and Jill Locke tomorrow (Friday)

19 Apr

The Autism Science Foundation hosts live chats on Fridays during April. Tomorrow they will have chats with David Amaral (of the U.C. Davis MIND Institute) at 12noon eastern time and Jill Locke (of U Penn) at 2pm eastern time. The chats can be found at the ASF website.

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By Matt Carey

Sun Times: Lawsuit alleges school bus aide slapped autistic boy

19 Apr

The Chicago Sun Times reports Lawsuit alleges school bus aide slapped autistic boy.

A mother noticed her child was resisting going on the school bus so she put a voice recorder in his backpack. She recorded an aide slapping her child. Twice. There are indications that perhaps the child was potentially doing something inappropriate as evidenced by the statement:

“Get your hands off my chest or I will break your fingers. Word,” before hitting him again, the suit claims.

If so, the aide should have reported the behavior for the child to get help. Instead, apparently, she hit him.

This follows on a story a year back about a New Jersey father who found that aides in his son’s class were apparently acting inappropriately and were verbally abusing his son. A more recent story discussed putting video in special education classrooms.

There is a significant difference between children in regular education and children in a classroom where most or all have significant communication disabilities. In a regular education environment, a parent could get information about what happens in the class from the child. The child can report back (although, sadly, often abusers understand that children will not speak about the abuse). There is no such window into a classroom of children without the ability to effectively communicate.

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By Matt Carey

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?

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By Matt Carey

Andrew Wakefield: Don’t try to blame me for the results of what I said and did

17 Apr

Andrew Wakefield is back in the news. Sadly this is because the predicted outbreaks of measles are again occurring in the U.K.. As Dr. Michael Fitzpatrick points out, Andrew Wakefield is not the only one who helped spread unfounded fear of the MMR, but he is the man most responsible for promoting the idea that the MMR vaccine causes autism. Without Mr. Wakefield, the scare would not have happened.

Now, 15 years after Mr. Wakefield’s heyday, an outbreak of measles has hit south Wales. And the press are reminding us all that Mr. Wakefield’s research reports were wrong and that he acted unethically in the process of creating those reports. And Mr. Wakefield is responding with the blame shifting and goalpost moving that has become his standard. To their shame, a UK newspaper hosted Mr. Wakefield’s response. And he has gone direct to YouTube with a video where he lays out his explanation. And calls for a debate. Yes, a debate. Televised. Because that’s how science is decided, right? TV debates? If there weren’t children suffering and in danger, this would be a bad joke.

Dr. Fitzpatrick also points out that he has offered to debate Mr. Wakefield in the past and Mr. Wakefield refused. Dr. Fitzpatrick has offered to take Mr. Wakefield up on his debate request. So far I don’t see any signs from Mr. Wakefield that he’s going to take Dr. Fitzpatrick up on his offer. Mike Fitzpatrick has been countering Andrew Wakefield’s misinformation since the early days of the MMR scare.

Let’s step back a moment and ask how did we get to this situation where low vaccine uptake has resulted in a major outbreak? Well, 15 years ago Mr. Wakefield’s team at the Royal Free Hospital released a paper which suggested a link between autism and the MMR vaccine. Mr. Wakefield did much more than suggest a link. At the press conference for the paper’s release (note that very few papers have press conferences) Mr. Wakefield called for the suspension of the MMR vaccine in favor of single measles, mumps and rubella vaccines. He didn’t really explain why the single vaccine would be more safe in his mind, making it very difficult for parents to accept how the single vaccines were, in his faulty opinion, safe.

Mr. Wakefield’s current logic has it that it is the government’s fault for not allowing the importation of single vaccines. Ignore the unfounded fear that Mr. Wakefield created about measles vaccines, he asks. Blame the government. Sure the government can take some blame (anyone recall when the prime minister refused to answer whether his family used the MMR?). As does the press. But without Andrew Wakefield and his faulty assertions, there would have been no scare.

Mr. Wakefield repeats his claim that his opinions on the MMR were based on a 200 page report on measles vaccines. He didn’t even mention his 200 page report at the time of the Lancet paper and press release. Ignore the research he did (we should have. It was faulty and unethically performed). Instead, let’s look to his report. A report which only now he will release to the public, according to his YouTube video. Yes, no one has seen his report. We were all supposed to take his opinion for the past decade and a half. He didn’t even tell us about his report. We were just supposed to have such confidence in him that we were supposed to have assumed he had some reason.

Now he will finally release his report, he says. That is, if his attorneys give him permission. Yes, he will spend the money to have attorneys read his 200 pages and only then, possibly, make some edits and then let us see how he came to this faulty conclusion.

Keep in mind, in 1998 Andrew Wakefield’s statements were made in the context of an active researcher who claimed he had evidence to support a reason to instill fear about the MMR vaccine (and, let’s face it, fear of the single vaccine. One of the lancet 12 got the single vaccine.) What did he say at the time?

In a video released with the press conference, he is shown stating:

I think if you asked members of the team that have investigated this they would give you different answers. And I have to say that there is sufficient anxiety in my own mind of the safety, the long term safety of the polyvalent, that is the MMR vaccination in combination, that I think that it should be suspended in favour of the single vaccines, that is continued use of the individual measles, mumps and rubella components.

No mention of his report. He gave this in the context of a man who led the team that had just released the 1998 Lancet study.

He further asks us to accept a new revised history, and this is the statement that forced me to write again about this man. In his video he claims, “all I could do as a parent is state what would I do for my child.” He didn’t present his views as “what would I do as a parent”. He presented his mistaken views as a researcher who was actively exploring the question. Don’t take my word for it. Take his. From his testimony before the GMC:

At that stage, having done a good deal of research, I wanted to make it clear to my colleagues, including Professor Zuckerman, that since a press briefing had been recommended and was being organised, that if I were asked, if the question were put to me, then I would have to act in due conscience based upon my researches and I would not be able to continue to recommend the combined measles/mumps/rubella vaccine.

emphasis added. Not his position as a parent. As a researcher.

Many of the children in Wales who are at risk for measles infection are older than those who typically get the MMR. Their parents decided years ago, during the height of the scare, to forgo the MMR vaccine. Even if Mr. Wakefield’s ideas were correct (and multiple studies have shown they are not), these children are not at risk of developing autism by his mechanism. And yet he doesn’t call for parents to vaccinate their children. Instead, he spends his time telling us all about how it isn’t his fault that children are getting infected.

It’s not about the children or their safety. It’s about him.

The idea that Mr. Wakefield’s claims could cause a scare and lead to outbreaks of measles is not new. His own research colleagues warned him of the possibility before their press conference. They asked that they show a public face that was “agnostic” towards the safety of the MMR. Mr. Wakefield refused. And now he asks us to ignore that it was his own actions that have put children at risk.

Mr. Wakefield’s colleague and co-author on the Lancet paper, Dr. Simon Murch, made this statement long ago:

This link is unproven and measles is a killing infection. If this precipitates a scare and immunisation rates go down, as sure as night follows day, measles will return and children will die

Night has followed day. Measles has returned. And we now wait and pray that none die.

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By Matt Carey

Autism reported at 1 in 50, but some parents no longer report their child is autistic. Can we say why?

16 Apr

A recent study reported that 1 in 50 children in the U.S. are autistic. This is based on parent report via a telephone survey, the National Survey of Children’s Health. The recent survey was taken in 2011-12. The last time a NSCH was performed was in 2007, and when those results were released in 2009 as Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007, a great deal of attention was focused primarily on two outcomes. First, the estimated parent-reported prevalence of ASD was about 1.1%. Second, about 0.5% of parents reported that they had been told that their child was autistic at some time in the past, but that their child was no longer autistic.

The report that came out recently presented a new parent-reported prevalence estimate: 1 in 50. (Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012). That report did not go into details about those who were no longer reported as autistic by their parents. The question was asked–as were many follow up questions.

The question and some of the responses are:

Does [the child] currently have autism or autism spectrum disorder?

No: 0.36%
yes: 1.70%
Don’t know: 0.08%

So, out of a total of a raw (uncorrected) 2.1% of parents who responded that they were told at some point that their child was autistic at some point, 0.36% said their child was no longer autistic. That’s comparable to the previous report in absolute terms (about 0.4%).

As already noted, they asked follow up questions to those who answered “no”. They asked directly “To the best of your knowledge, did [your child] ever have autism or autism spectrum disorder?”.

Of those 0.36% whose child had “lost” their diagnosis at some point, 0.24% of parents reported “No”. I.e. the parents reported that they were told that their child was autistic in the past, but out of those parents 2/3 reported that their child was never autistic. A further 0.02% said they “don’t know” if their child was ever autistic.

to put another way, in the majority of cases where a parent-reported “ever had” been told their child was autistic, the same parent reported that the child was never autistic or they didn’t know.

If you are looking for evidence of recovery, 0.07% parents said that “Treatment helped the condition go away”. Another way to look at this: that’s 69 reports out of “treatment helped the condition go away” out of 2041 who reported they had ever been told their child was autistic (ASD). That’s about 3.4% of the total “ever had ASD” population.

The survey did not ask what specific therapies parents thought helped their children go from autistic to non-autistic. They did ask if, “The condition seemed to go away on its own.” (37 parents answered yes, about 1/2 of the number who said treatment helped). 81 parents reported “The behaviors or symptoms changed” 46 reported “A doctor or health care provider changed the diagnosis.”

Out of the total 0.36% (343) reports of no to “Does [the child] currently have autism or autism spectrum disorder?”, 102 said that “The diagnosis was given so that [the child] could receive needed services” and 122 said “You disagree with the doctor or other health provider about his or her opinion that [the child] had autism or autism spectrum disorder.”

The National Survey of Children’s Health is not just about autism. Which means they can’t spend all their time on autism questions. This time they have answered some of the questions raised by the idea that a sizable fraction of parents who are ever told their child is autistic later conclude their child is not. That fraction where parents report that treament was part of what “made the condition go away” is nonzero, but at about 3.4%, it is small enough that getting accurate information on what the parents thought was involved will be difficult. And it should be about 3-4 years before we get another NSCH survey report.

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By Matt Carey

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