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Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism.

24 May

Perhaps the most commonly cited alternative therapy approach for autism is the gluten free/casein free diet. The idea was promoted largely based on the “leaky gut” and “opiod excess” idea of autism. The basic idea was that the intestines of autistics are for some reason “leaky” and incompletely digested proteins from gluten (grains) and casein (milk) enter the bloodstream and act much like an opiod (drug) causing (somehow) autism. Multiple research teams have looked for evidence of these “opiods” without success. But the idea that eliminating gluten and/or casein as an autism treatment.

Timothy Buie is perhaps one of the most respected gastroenterologists in the autism communities. He has recently written a literature review on the topic: The relationship of autism and gluten.

Here is the abstract:

BACKGROUND:

Autism is now a common condition with a prevalence of 1 in 88 children. There is no known etiology. Speculation about possible treatments for autism or autism spectrum disorders (ASD) has included the use of various dietary interventions, including a gluten-free diet.

OBJECTIVE:

The goal of this article was to review the literature available evaluating the use of gluten-free diets in patients with autism to determine if diet should be instituted as a treatment.

METHODS:

A literature review was performed, identifying previously published studies in which a gluten-free diet was instituted as an autism treatment. These studies were not limited to randomized controlled trials because only 1 article was available that used a double-blind crossover design. Most publish reports were unblinded, observational studies.

RESULTS:

In the only double-blind, crossover study, no benefit of a gluten-free diet was identified. Several other studies did report benefit from gluten-free diet. Controlling for observer bias and what may have represented unrelated progress over time in these studies is not possible. There are many barriers to evaluating treatment benefits for patients with autism. Gluten sensitivity may present in a variety of ways, including gastrointestinal and neurologic symptoms. Although making a diagnosis of celiac disease is easier with new serology and genetic testing, a large number of gluten-sensitive patients do not have celiac disease. Testing to confirm non-celiac gluten sensitivity is not available.

CONCLUSIONS:

A variety of symptoms may be present with gluten sensitivity. Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism. There may be a subgroup of patients who might benefit from a gluten-free diet, but the symptom or testing profile of these candidates remains unclear.

To paraphrase the conclusions: The evidence is not there for eliminating gluten from the diets of autistics. Perhaps some minority has a gluten sensitivity but so far there is no good test for this possible subgroup.

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By Matt Carey

Mark Geier loses his last medical license

23 May

At one time, Mark Geier held licenses in 12 different states. Not any more. Until recently he had a license in Hawaii, but no longer. Per Todd W at Harpocrates Speaks: Mark Geier: Not a Leg to Stand On. Mark Geier, who promoted the idea that shutting down sex-hormone production in autistic children, adolescents and young adults was an autism cure, is no longer licensed to practice medicine in the U.S..

More thorough discussion at Mark Geier: Not a Leg to Stand On.

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By Matt Carey

Autism not linked to Lyme disease

22 May

There are many hypotheses of what causes autism.  Many.  Among those is that autism is caused by Lyme disease. Lyme disease is caused by infections of bacteria spread by ticks. A quick internet search brings up numerous sites discussing a supposed link between autism and lyme disease, with organizations, conventions and books devoted to the idea. For example, one book is titled The Lyme-Autism Connection: Unveiling the Shocking Link Between Lyme Disease and Childhood Developmental Disorders. Nine studies in pubmed come up on a search with terms autism and lyme.

A group calling itself “Lyme Induced Autism” claims that a large fraction of autistic children have active Lyme infection:

A subset a children on the autism spectrum also have active Borreliosis, we don’t know how large of a subset this is, we do know from informal studies that it is AT LEAST 20-30% which would be over 200,000 children in the United States alone.

Emphasis in the original.

So, one would expect that testing a large number of autistic children for antibodies against the bacteria would bring up AT LEAST 20-30% postives. But that isn’t the case. A recent study from the U.S. National Institutes of Health found that in a sample of 104 autistic children, none of them had antibodies. None. Not 20%. Not 2%. None.

Lack of serum antibodies against Borrelia burgdorferi in children with autism.

The abstract is brief and to the point:

It has been proposed that Borrelia burgdorferi infection is associated with ∼25% of children with autism spectrum disorders. Here antibodies against Borrelia burgdorferi were assessed in autistic (n=104), developmentally delayed (n=24) and healthy control (n=55) children. No seropositivity against Borrelia burgdorferi was detected in the children with and without autism. There was no evidence of an association between Lyme disease and autism.

Repeat for emphasis: There was no evidence of an association between Lyme disease and autism

Lyme disease is usually treated with antibiotics. Some groups have taken to long-term antibiotic use to treat autism (just as other groups have taken to long-term antiviral use or long-term chelation to treat other purported causes of autism). The long-term antibiotic movement got support a few years ago when Nobel Prize winner Luc Montagnier claimed that autism is caused by bacterial infections. His methods and conclusions were far from the quality one would expect from a standard researcher, much less a Nobel Laureate.

Not everyone promotes long term antibiotics, though. The “Lyme Induced Autism” organization does include a page on antibiotics, they promote the following methods of treating autism:

- Antimicrobials – either herbal, homeopathic, energetic or as a last resort pharmaceuticals

- Nutrition – A diet free of genetically modified organisms, organic whole fruits, vegetables, gluten free grains, organic grass fed beef, organic hormone free – free range chicken, organic juicing, etc. Building a good healthy diet as a base to strengthen the body and gastrointestinal system feeding the body to strengthen the cells.

- Gentle chelation when appropriate and with adequate binders available to assist in detoxification.

- Opening of detoxification pathways to assist with moving dead microbes and metals out of the body, preventing reabsorption and heavy detox symptoms. This can be done with herbs, energetic medicine, laser, homeopathy and/or homotoxicology.

- Regenerating the brain by using neurofeedback, biofeedback, herbs, energy medicine, light and sound devices, sensory input, etc.

- Emotional healing using recall healing, cognitive therapy, addressing family issues and emotional blockages preventing true healing the family.

-Customizing treatments by utilizing individual testing with lab work, energetic testing, ART testing, etc.

-Avoidance of chemicals, pesticides, EMF/EMR, GMO’s, preservatives, food colorings, synthetic supplements.

Why chelation (or pretty much any of the above)? Seriously, why chelation to treat a persistent bacterial infection while avoiding “pharmaceuticals” (i.e. antibiotics)?

The evidence for Lyme disease as the cause of autism for a large fraction of the population has always been shaky. Given that, I doubt this evidence will stop the groups who promote the idea.

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By Matt Carey

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

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