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Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish

17 May

One of the topics that comes up over and over online is “The Amish don’t vaccinate” and “the Amish don’t have autism”. Both statements are incorrect. The Amish have no religious prohibition against vaccination and they do have autism.

The question of autism amongst the Amish has been studied and is being presented at the IMFAR autism conference this week. The paper,
Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish, demonstrates a preliminary prevalence of 1 in 271 as the prevalence of autism amongst Amish children in two Amish communities: Holmes County, Ohio and Elkhart-Lagrange County, Indiana.

J. L. Robinson , Hussman Institute for Human Genomics, University of Miami Miller School of Medicine, Miami, FL
L. Nations , Hussman Institute for Human Genomics, University of Miami Miller School of Medicine, Miami, FL
N. Suslowitz , Center for Human Genetics Research, Vanderbilt University, Nashville, TN
M. L. Cuccaro , Human Genetics, University of Miami School of Medicine, Miami, FL
J. Haines , Center for Human Genetics Research, Vanderbilt University, Nashville, TN
M. Pericak-Vance , Hussman Institute for Human Genomics, University of Miami Miller School of Medicine, Miami, FL
Background:

The prevalence rate of Autism Spectrum Disorders (ASD) appears to be steadily increasing. The latest report from the Center for Disease Control estimates the rate of ASD is 1 in 91 children (Kogan, 2009), up from 1 in 150 in 2007. Understanding the seeming changes in ASD prevalence require careful exploration of genetic and environmental factors. A method that has proven useful in dissecting the etiology of complex diseases is the study of isolated populations. One population isolate that has been studied extensively is the Amish, with well over 250 genetic studies. Expanding studies of autism to the Amish may provide important information about etiology. A crucial first step in this process is a feasibility study to determine ASD prevalence rates in this population.

Objectives:

This study presents preliminary data on the estimated prevalence of ASD among the Amish in two Amish dominant counties as part of a larger epidemiological study. All children between ages 3 to 21 in those counties will be screened for the presence of an ASD.

Methods:

Screening occurred in, two of the largest Amish communities in the United States. Trained clinicians ascertained door to door using a published Amish Directory as a guide. Families were approached and asked to participate in a brief interview regarding their children. Two primary screening instruments were used: the Social Communication Questionnaire (SCQ) and the DSM-IV-TR Checklist (a tool created by the authors). A Vaccination History and a brief family history including questions specific to the ASD phenotype were also taken. Children screening positive on either the SCQ or DSM-IV-TR Checklist were seen for a more comprehensive clinical evaluation by two licensed psychologists. This evaluation included the Autism Diagnostic Observational Schedule (ADOS) and Autism Diagnostic Interview (ADI).

Results:

From September 2008 to October 2009, 1899 Amish children were screened in the two Amish communities. A total of 25 children screened positive for ASD on either the SCQ or the DSM-IV-TR checklist. A total of 14 screened positive for ASD on both screeners. Of those 25 children, 14 were evaluated and seven children were confirmed as having a diagnosis of ASD using the ADI and/or ADOS, and clinical judgment. Interestingly, four of the seven only met ASD criteria on the ADOS but not the ADI. Three of the four who were not diagnosed by the ADI only missed criteria on the Behavioral Domain, which may be attributable to the reporting style of Amish caregivers.

Conclusions:

Preliminary data have identified the presence of ASD in the Amish community at a rate of approximately 1 in 271 children using standard ASD screening and diagnostic tools although some modifications may be in order. Further studies are underway to address the cultural norms and customs that may be playing a role in the reporting style of caregivers, as observed by the ADI. Accurate determination of the ASD phenotype in the Amish is a first step in the design of genetic studies of ASD in this population.

International Meeting for Autism Research abstracts are online

14 May

INSAR, the International Society for Autism Research, hosts a conference each year. IMFAR, the International Meeting for Autism Research is the largest autism conference held.

IMFAR is being held in Philadelphia, Pennsylvania (US) this year, May 20 to May 22nd. The conference abstracts give you an idea for the latest research trends.

You can search the program online. Alternatively, you can download the program or the abstracts as pdf’s.

Autistic researcher Michelle Dawson is listed as the anchor author on a study, Perception in Autism, 2006 – 2009: Updating the Enhanced Perceptual Functioning Model.

Dr. Lisa Croen from Kaiser Permanente has a paper on whether maternal infections are linked to autism. Maternal Infection During Pregnancy and Risk of Autism Spectrum Disorders. They find an increased risk due to bacterial infections in the second half , similar to results from a recent paper from Denmark.

Dr. Gail Windham’s group has a study, Autism and Distribution of Hazardous Air Pollutants at Birth in Southern California. This is a follow on to their study of Hazardous Air Pollutants in Northern California (Autism Spectrum Disorders in Relation to Distribution of Hazardous Air Pollutants in the San Francisco Bay Area) which is often cited in support for the mercury-causation hypothesis. The conclusion to the news study states: ” Examining HAPs in another region of California with higher concentrations and larger numbers did not replicate the original results. Metals as a group were not associated, but instead aromatic solvents yielded the highest risks”

Prof. David Mandell of the University of Pennsylvania has large number of papers. I follow his work since one of his areas involves under-represented groups such as minorities and adults. For example, one of his papers is Services Utilized by Adults with Autism Spectrum Disorders.

There are a number of papers discussing regression. For example, about 33% of autistic children underwent some form of regression in this study. Dr. Swedo’s team at NIMH looked closer at regression in autistic children in Regression Histories in Young Children with Autism: Timing and Associations Out of 185 children whose parents were interviewed:

Among the 80 cases with significant regression, parents of 26 children indicated physical illness/medical issues may have been related to loss of skills, and 21 responses indicated an associated psychosocial stressor (in 7 of these cases, both illness and psychosocial stressors were reported). However, only 8 reports clearly indicated a sudden loss of skills. Five of the 8 cases with sudden loss included both loss of language loss and social engagement/responsiveness. Two of the sudden loss cases were reported to be associated with a physical illness/medical issue and 3 were reported to be associated with a psychosocial stressor (with 1 reported to have both).

Obviously, there is more. Much more. I’m still working my way through the program book. D’oC will be attending IMFAR and blogging here at LeftBrainRightBrain with support from the Autism Science Foundation.

Blogging about IMFAR

12 Apr

INSAR‘s annual International Meeting For Autism Research (IMFAR) is convening in Philadelphia this May (May 20-22).

Thanks in part to a generous travel grant from the Autism Science Foundation, I’ll have the opportunity to attend – and of course I’ll be blogging about it here at LBRB.

For the most part, I plan to write about research, projects, researchers themselves, or talks that I find interesting and attain sufficient understanding, but I’ll also be sharing a little with LBRB readers, about the overall IMFAR experience upon my return. I’m also looking forward to attending the Autism Science Foundation’s “Science and Sandwiches” where plans for this IMFAR lunchtime edition include presentations “from six ASF-funded pre-doctoral students who will describe their new research projects”.

I’ve always been pleasantly surprised by, and appreciative of scientists in general. I’ve had the opportunity to exchange ideas with many over the last few years while writing articles at both LBRB, and Autism Street, and even had the benefit of informal peer review (for some of the more scientifically involved articles) prior to publishing.

If the opportunity arises to meet and talk with individual researchers, I also hope to write some brief “Meet the Researchers” type pieces for those who might be able to take 10 minutes for a few questions. Hopefully this can bring a certain aspect of personal conversation with some of the scientists who’ll attend this year to readers at LBRB.

As more details about the planned presentations (and even posters) become available, be sure to let me know about any you (dear readers) think look particulary interesting. Simply leave a comment, or drop me a note at:

autism blogger at gmail (remove the spaces, and use the symbol for at).

Recovery from autism

11 May

At IMFAR, a new abstract is available about recovering from autism. Its also covered by AP in a slightly oblique way. For example, the AP story states:

…at least 10 percent of children with autism can “recover” from it — most of them after undergoing years of intensive behavioral therapy…

And yet I can’t see ABA mentioned in the abstract. Of course, it may be mentioned in the whole paper but its an odd assumption for AP to make.

The other weird thing is the quote from Geraldine Dawson of Autism Speaks:

Autism researcher Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, called Fein’s research a breakthrough.

How so? Its pretty much a replication of work done in December 2008 by Dr Molly Helt. I mean OK it narrows the recovery band from between 10 to 20% of kids from Helt’s figures of 3 – 25% but that hardly makes it a breakthrough. Just a refinement.

Interesting comments abound all over the web. One of the leaders of a large autism/vaccine group says:

Every parent I know who practices biomed treatment also uses some form of educational intervention, whether it is ABA, Floortime, SonRise, etc…

Now lets compare that statement to Helt’s work:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

and in a further clarification in an email to me:

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that

So if every parent this autism/vaccine leader knows practices educational intervention and the claim is that these kids recover…but Helt’s team found no evidence that biomedical treatment exists in recovered kids, I think that tells its own story.

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