Archive | May, 2010

Blogging IMFAR: Autism And Divorce Debunked, Among Others

20 May

Autism And Divorce Debunked

Does anyone really believe that whopper of an urban-legend that goes something like this – “The divorce rate among families with autistic children is 80%!”?

Sure, many people do believe it, and I wrote about this topic when the Easter Seals Living with Autism survey results were released a little over a year ago, here. You probably won’t be surprised, but the often repeated 80% statistic looks like pure online mythology. Sullivan has the early notes here. And some of the more mainstream media have the story as well.

As pointed out previously by other LBRB commenters, and in addition to the Easter Seals “Living With Autism” survey, there is some existing science on the subject that essentially shows that autistic children are no more likely to live in divorced households than non-ASD children.

– Montes & Halterman, Psychological Functioning and Coping Among Mothers of Children With Autism: A Population-Based Study, Pediatrics 2007;119;e1040-e1046

– Montes & Halterman, Characteristics of school-age children with autism in the United States, J Dev Behav Pediatr. 2006;27:379–385

Well, now there’s a much larger research study heading for publication. I had the opportunity to sit down with Brian Freedman PhD, from the Kennedy Krieger Institute’s Center For Autism And Related Disorders in Baltimore, MD (the study’s lead author).

When asked about how he became interested in pursuing researching the 80% divorce rate urban legend, he explained that as a result of hearing concern about family stressors and divorce from families that he works with, he wanted to find the original source of the statistic. Freedman went on to explain that he set out locate a scientific source for the statistic, but that the science to support it just wasn’t out there.

On the topic of working with families regularly, Freedman also shared that, “an important consideration in providing information to families, is that the information provided is correct, and evidence-based”.

The results of the study were stated as follows at the press conference:

The weighted unadjusted percentage of children with ASD belonging to a family with two married biological or adoptive parents was 64%, as compared to 65.2% for children who do not have an ASD.

In fact, in addition to finding “no consistent evidence of an association between a child having an ASD diagnosis and that child living in a traditional vs. non-traditional family”, the abstract from Freedman’s research goes on to say that once variables of co-occurring psychiatric disorders are controlled for,
“our results show that a child with an ASD is slighty more likely than those without ASD to live in a traditional household”.

How does that translate to the 80% divorce rate myth? It blows it out of the water. The 80% divorce rate myth predicts that only 20% percent of autistic children would live with married parents (or at least it allows for that perception). Based on this research, reality would appear to dictate that 64% of autistic children live with two married parents, pretty much just like non-ASD kids.

Interestingly, and although no research is ever free of any limitations, this seems to be a large, and probably fairly population-representative study. The data for children originated with the National Survey for Child Health (Blumberg et al., 2009), which is not only very recent, it’s inclusive of over 77,000 children aged 3-17.

What? Low levels of “quality indicators” on autism websites?

Really?

Okay, so no one is going to be surprised by this one, at least LBRB readers aren’t anyway. An abstract presented at today’s press conference details research by a team at the Yale Child Study Center.

122.001 Pressence of Quality Indicators On Autism Websites. B. Reichow*1, J. Halpern2 and F. R. Volkmar3, (1)Yale Child Study Center, (2)Fordham University, (3)Yale School of Medicine

See page 452 of the online abstract book for the rest of the study detail, but I’ll save you some time, and share with you that if autism websites in general were being graded on the presence of some selected objective indicators of website quality, the majority would be getting an “F”. Most people probably wouldn’t eat in restaurants with failing health grades, why would they apparently seek information about autism from the internet? Perhaps that “why”, or even the implied assertion on my part that this is where people do get information about autism, will have to go undiscussed. The fact is, the websites that are out there (that turn up for very generic searches in popular search engines), are really lacking when it comes to quality indicators.

Results: On average, the 164 websites analyzed for this study suggested autism related websites contained less than 6 of 8 quality indicators. Nearly 1 in 5 websites offered a product or service for purchase, and/or promoted a miracle cure. These websites were also, on average, some of the least likely websites to contain the quality indicators.

As I was hoping to learn more about just what the website “quality indicators” were, I was fortunate enough to have a chance to sit down and chat briefly with study’s lead author, Brian Reichow. He shared some of the important ones with me, and I think most readers would agree with the importance of their presence on trusted websites – things like: clear authorship (who’s written the website’s content), the use of references (citing sources), website currency (out of date could be a problem), clear disclaimers with respect to expertise and advice, reading level, and presence of a clear feedback mechanism.

Yep, I do wonder if Left Brain/Right Brain was picked up in those top 100 searches conducted by these researchers, and yep, I wonder how LB/RB fared by their actual criteria.

Other interesting press conference items.

There were, of course, more abstracts presented than the two that interested me the most which I’ve described here. I’ll have to simply point them out with some very brief notes and abstract pages noted.

Kids learn better from their peers Page 17

104.004 Social Inclusion of Children with ASD at School: Effects of a Randomized Controlled Treatment Study. C. Kasari*, University of California, Los Angeles

Dr. Kasari shared some interesting results, that will probably seem like a no-brainer to many. It’s good to have some supporting science though. Autistic kids targeted along with peers for what looks to me like “inclusion intervention” (such as specific paired-friend playground activities during recess), did better on some specific social measurements than kids targeted for intervention, but not along with peers.

Sleep fMRI as a diagnostic tool? Page 125

107.002 Abnormal Brain Response to Language Stimuli in Sleeping Infants and Toddlers with ASD. L. T. Eyler*1, K. Pierce2 and E. Courchesne2, (1)University of California San Diego, (2)University of California, San Diego

Admittedly, I find this fascinating. There is emerging brain imaging and a tool that may lead to the ability to diagnosis of autism very early – like infant early. This particular research group has identified a potential abnormality in the laterality of language in autistic children, as identified by the use of a newly developed sleep fMRI. Of course this raises a million potential ethical quesitons, but it seems possible that understanding potential language acquisition issues could lead to the development of new adaptive and perhaps helpful early teaching/parenting/family strategies.

Tomorrow’s program

In case anyone wants to follow along in the program (see around page 12 of the PDF), I’ll be trying to attend the following tomorrow:

8:15-9:30 Keynote (Mouse Models…)

10:00-12:00 Oral Session Epidemiology 1

1:30-3:30 The Ethics of Communicating Scientific Risk

4:00 Tom Insel – IACC Upate

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

U. Rochester researchers discuss diet-autism trial

20 May

We’ve already blogged this story a couple of times on LeftBrainRightBrain. The GFCF diet is not effective as an autism treatment. When I found these videos on the University of Rochester website, I thought they would be interesting to many readers.

Obviously, the Rochester team knew this study would be getting publicity

They discuss the methodology and show pictures of some of the snacks. They discuss how the GFCF diet is non trivial to implement. They recommend (strongly) working with a good nutritionist.

Clinical Trial of the GFCF diet in children with GI disorders

19 May

The gluten free, casein free diet is not beneficial to all autistics. Not even most. But the question remains, how about a small subset? What about autistics with gastrointestinal (GI) conditions?

A Study to Assess the Role of a Gluten Free-dairy Free (GFCF) Diet in the Dietary Management of Autism Associated Gastrointestinal Disorders

I find the phrasing “Autism Associated Gastrointestinal Disorders” a bit odd. Are they trying to say that the GI disorders are linked to the autism? Since there is no group as yet shown to have GI disorders linked to autism, this would seem a tricky criteria to implement. How will they, for example, chose those who have GI disorders “associated” with autism vs. those who have autism and GI disorders which are not associated?

Ah well, best not to get tied up in those details.

Here are the inclusion criteria:

Inclusion Criteria:

* Informed consent / Assent, as applicable must be signed prior to executing any study related procedure
* Children, male or female, 2 to 17 years old (inclusive)

Confirmed diagnosis of ASD according to the diagnostic measures:
o DSM-IV Symptom Checklist
o Autism Diagnostic Observation Schedule(ADOS)&/or Autism Diagnostic Interview Revised(ADI-R)within 18 months prior to entry into the study
* Able to consume at least 2 cartons of the study drink daily

Subjects must present with a current history of at least two of the following persistent GI symptoms as confirmed by the study physician:
o Diarrhea, as characterised by three or more loose stools a day for at least 8 out of 14 days
o Constipation as characterised by less than 3 bowel movements per week, for at least a 2-week period
o Esophageal reflux, as characterised by 3 or more episodes of regurgitation per day on 10 out of 14 days
o Abdominal pain manifested as pain after eating or self injurious behavior on at least 8 out of 14 days
o Suspected food allergy which is confirmed by a physician, as characterized as a recurrent reaction or association with specific foods

I think that last one is key–suspected food allergy with recurrent reactions to specific foods. Of course such conditions should be treated, and would likely respond to changes in diet.

I also question “Abdominal pain manifested as pain after eating or self injurious behavior on at least 8 out of 14 days”. How is self-injurious behavior a manifistation of abdominal pain? Yes, I can see how a child with abdominal pain could be self injurious, but I can also see that many children with self injurious behaviors could have them as a result of other conditions.

Here are the exclusion criteria:

Exclusion Criteria:

* Children with a history of anaphylaxis to dietary milk and wheat proteins
* Children with severe concurrent illness
* Children who are prescribed systemic steroids
* Children currently receiving chelation therapy, hyperbaric or antifungal treatment within 1 month of entry into the study and during the study period.
* Children with a confirmed diagnosis of celiac disease
* Subjects who have previously tried dietary elimination of casein and gluten for at least 1 month period and failed to demonstrate a response by parent perception
* Children who are unable to consume at least 2 cartons of the study drink daily

It strikes me a bit odd that children who have been on “The Diet” in the past but didn’t respond would be excluded while those whose parents who tried “The Diet” and perceive benefit would be included. But, I guess this is a treatment study, not a “demonstrate that GI complaints exist in autistic children” so that selection bias may be OK. It will be interesting to see to what level parents’ perceptions are accurate in these cases.

The real question I have is, why? Why do this study? Why focus on autistics? If a person, child or adult, autistic or not, has a food allergy and reacts to those foods, of course take them out of the diet.

But, not all of the children in this study will have suspected food allergies. Any two of the criteria above are required for inclusion in the study. But, I’m still stuck with “why autistics”. Why not study children, any children, who have GI complaints and see if they respond to the GFCF diet? Or, why not study both autistics and non-autistics and shed some light on the assertion that GI disorders are associated with autism?

The study is being conducted at Massachusetts General Hospital with Dr. Tim Buie as the investigator. Anyone interested in participating can find the contact information on the Clinical Trials announcement.

Blogging IMFAR: Opening Press Conference and GFCF Diet Trial Results

19 May

After air traffic/weather delays, I arrived in Philadelphia late last night. By the time I made my way downtown to the hotel, and had a chance to catch up on some required work e-mail, I was was pretty well ready for bed. Having had a very busy past couple of weeks at work did not leave me much time to preview the IMFAR program materials, so before turning in, I’d figured I’d better look through it thoroughly.

And that’s when the pure size of IMFAR finally sunk into my brain. To cover this, from one blogger’s perspective, is going to be a huge challenge. There is absolutely no way for one human to assign attention to all that is here in the field of autism research – a great deal of the presentations occur simultaneously in separate meeting rooms.

For me, IMFAR started with this afternoon’s press conference. Organized by INSAR, and following a brief introduction by Dr. David Amaral (INSAR’s president), Dr. David Mandell (the IMFAR Scientific Program Committee Chair) spoke briefly about just how large IMFAR has become – from couple of hundred abstracts and a few hundred attendees nine years ago, to closer to a thousand accepted abstracts and a couple thousand attendees this year.

Dr. Mandell shared what he thought were two imporant themes from this year’s scientific program, the first being the volume of good research that seems to be emerging. Although Dr. Mandell pointed to progress in animal models and gene research (and its subsequent relevance in gene-brain imaging/brain functioning research), he seemed to ascribe importance to pointing out a second theme, in that reasearch is also beginning to focus on more pragmatic things – or to paraphrase his words, research is beginning to look at things that can effect “real and positive change”.

For many in the autism community, this is bound to raise ethics questions about “treatment” for autism in general, but put aside debate over social vs. medical model of autism, if only for the moment. There’s another important aspect, and Dr. Mandell did not miss this. Studying treatments has the potential to effect real and positive change, because many treatments and “alternative medicine” in use by families on children are simply untested, and some even have the potential to be dangerous.

As an example of a treatment study that has the potential to encourage parents to take a closer look at the science, Dr. Susan Hyman from the University of Rochester presented her team’s findings from their GFCF study (this is the randomized, double-blind, placebo-controlled that began in 2003). I’ll spare the gory details, as they are well-documented in the previous post GFCF of no benefit. Suffice it to say that what started with anecdotal reports of specific benefits for autistic children from a GFCF diet, is not supported by scientific data when studied with good research methodology. While it’s important to note that this small study has more rigorous methodology than any previous study on the use of the GFCF diet with autistic children, it’s also important to note that these are pre-publication results shared with the press and at IMFAR. Additionally, when asked about any real scientific basis for the GFCF diet for autism, and after acknowledging the historical [but not necessarily scientifically founded] aspect of a “leaky gut and opioid excess hypothesis”, Dr. Hyman was careful to point out that there may be other complex areas in nutrition that are relevant for learning and behavior in autistic children.

Even with what are essentially negative results for this study, it appears that “nutrition and autism” research will continue at the University of Rochester. I suspect that this University of Rochester GFCF RCT will dominate autism news for the next couple of days, as it seems to have that appeal of a topic of popularity. It also wouldn’t surprise me if this story is a headline for some of the mainstream media tomorrow.

Next up: More on Autism and Divorce Debunked! Plus a little more about some of the other abstracts from the press conference. I’ll also share a little about the pieces of the program I plan to attend, so anyone wishing to, can follow along in the published program, as I attend and report back here.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

The Gluten Free and Casein Free (GFCF) Diet: A Double Blind, Placebo Controlled Challenge Study

19 May

This study has been a long time coming. I’ve been hearing about it for years: a study on the GFCF diet for autistics. The study, led by Dr. Susan Hyman of the University of Rochester, has been on clinicaltrials.gov since August 2004.

The concept was fairly simple: get children on a GFCF diet. Monitor their diet for proper nutrition. Once the child is on the diet, give the child small snacks, some with small amounts of gluten or casien or both and some without. Track behaviors. The parents and children and most of the researchers were “blind” to which snacks had the gluten and or casien.

The results, as Kev has already blogged, are finally in. The result: autistic children, in general, are not affected by gluten or casien. The “autism is just a leaky gut” theory was never very well supported.

Does this mean that no autistic children have sensitivities to gluten or casien? Hardly. Being autistic is not a shield against food sensitivities. What this does tell us is that autism is not caused by these nutrients.

The abstract is up on the IMFAR website:

S. Hyman , Strong Center for Developmental Disabilities, Pediatrics, University of Rochester, Rochester, NY
P. A. Stewart , General Clinical Research Center, University of Rochester, Rochester, NY
T. Smith , Strong Center for Developmental Disabilities, University of Rochester, Rochester, NY
J. Foley , Pediatrics, University of Rochester, Rochester, NY
U. Cain , General Clinical Research Center, University of Rochester, Rochester, NY
R. Peck , General Clinical Research Center, University of Rochester, Rochester, NY
D. D. Morris , Pediatrics, University of Rochester, Rochester, NY
H. Wang , Biostatistics and Computational Biology, University of Rochester, Rochester, NY
Background: Approximately 1/3 of children with ASD receive dietary interventions. While families report dramatic clinical effects, two prior trials do not confirm these positive outcomes. Neither examined nutritional sufficiency or controlled for other interventions. This study was undertaken to examine the behavioral and physiologic effects of the GFCF diet and assess its nutritional adequacy.
Objectives: To evaluate the nutritional adequacy, physiological effects, and efficacy of the GFCF diet on symptoms of ASD using randomized double blind placebo controlled challenges in preschool children with ASD. Methods: ADI-R/ADOS positive children ages 30-54 months receiving at least 10 hours/week of early intensive behavioral intervention (EIBI) were recruited. They were screened for milk/wheat allergies, celiac disease, and anemia/iron status by RAST, TTG and CBC/ferritin respectively. After a strict GFCF diet for at least 4 weeks, they received weekly, grouped, randomized double blind challenges containing either 20 g wheat flour, 20 g evaporated milk, both, or neither on three separate occasions over 12 weeks . The challenges appeared identical and were similar in taste and texture. Laboratory monitoring and BMI recording occurred at baseline, 6,18,and 30 weeks. Behavioral data was collected at these times plus the day before then 2 and 24 hours after each challenge, Measures included: Bristol Stool Scale, Sleep Diaries, Actigraphy, Conners Abbreviated Rating Scale, and Target Symptoms Scale. Ritvo Freeman Real Life Rating Scales (RFRLRS) were recorded at 2 and 24 hours post challenge. Challenges occurred only if measures were at baseline levels. Data were analyzed by group and for individual children comparing baseline with 4 weeks on diet and then pre/post challenges.
Results: Twenty one children were recruited. Two were excluded for positive TTG, one for anemia. Four additional children were unable to establish the diet or left EIBI. Group data on the 14 successful participants (43.5 months, range 35-54 ; 12 males) demonstrated no statistical change in frequency or quality of stools, sleep, actigraphy for activity, or parent/teacher/observer scores of attention/activity for baseline/ diet or in pre/post challenge ratings. The group RFRLRS data 2 hours post challenge were higher after placebo than after challenges of casein (p=.013), gluten (p=0.024) or gluten + casein (p= 0.021). These differences were not present 24 hours post challenge. Single case analysis will be presented. All children were maintained within acceptable ranges for micro/macronutrients with intense weekly dietary monitoring.
Conclusions: This is the first study to examine the behavioral effects of a nutritionally monitored GFCF diet on attention, sleep, stool pattern, and core symptoms of ASD. While no favorable effects of the GFCF diet on attention, sleep and stool patterns were identified in group analyses, such effects may occur for individuals or for subgroups of children (e.g. with significant GI disease), providing the basis for positive anecdotal reports. Future studies need to address the potential effects of nutrition on behavior in children with ASD and be powered to evaluate subtle changes in core symptoms.
Funded by STAART NIMH PO1HD35466 and National Center for Research Resources (NCRR) NIH UL1RR024160; Autism Treatment Network/Autism Speaks – AIRP Network(HRSA)

The study has been picked up by a number of news outlets, including the LA Times, USA Today and ABC News.

Families with autistic children do not divorce at a higher rate

19 May

Autism and divorce. There is a “statistic” that gets repeated that 80% of families with an autistic child end in divorce. Turns out, this isn’t true. Kev here at LeftBrainRightBrain has already discussed the recent press release on this.

As a blogger here, I have the opportunity to write long responses and post them separately. When I read that the study is going to be presented at IMFAR later this week, I looked up the abstract.

B. H. Freedman , Center for Autism and Related Disorders, Kennedy Krieger Institute, Baltimore, MD
L. Kalb , Center for Autism and Developmental Disabilities, Kennedy Krieger Institute, Baltimore, MD
B. Zablotsky , Mental Health, Johns Hopkins University, School of Public Health, Baltimore, MD
E. Stuart , Mental Health, Biostatistics, Johns Hopkins Univ. School of Public Health, Baltimore, MD
Background: A large body of research suggests that raising a child with an Autism Spectrum Disorder (ASD) is a uniquely stressful experience for parents (Fisman et al., 1989; Konstantareas & Homatidis, 1989). The demanding nature of parenting a child with ASD can be particularly deleterious to the parents’ relationship, causing a significant decrease in marital satisfaction (Bristol et al., 1988). However, it is presently unclear if having a child with an ASD increases the risk for separation among biological parents. While speculation abounds in the mainstream media about increases in separation and divorce for this population, very little empirical and no epidemiological research has addressed either this claim or the unique factors that may contribute to separation of these parents.

Objectives:

1. Examine the association between having a child with a current ASD diagnosis and the relationship status of their parents.

2. Identify factors that contribute to a greater likelihood of a child with ASD living with two biological or adoptive parents.

Methods: Data used for this study were taken from the 2007 National Survey for Child Health (Blumberg et al., 2009). Using children ages 3 to 17 years, our final sample size was 77,911. Survey weights allow the results to generalize to the noninstitutionalized US population of children. The outcome variable of family structure was dichotomized as being either traditional (two parent household, either biological or adoptive) or non-traditional (a two parent household with step-parents, a single mother or father, other relatives, or other family types). A four-stage sequence of survey weighted logistic regression models were developed to examine the association between having a child with a current ASD diagnosis and living in a traditional family, while controlling for potential confounders. Model 1 controlled for basic demographic confounders; Model 2 added maternal characteristics; Model 3 included additional socioeconomic indicators; and Model 4 included co-occurring psychiatric diagnoses in the child (Externalizing, Internalizing, and ADHD).

Results: No association between a child having a current ASD diagnosis and their family structure was identified in the first three logistic models (OR range .98 – 1.06, all p>.05). However, this association reached marginal significance when concurrent psychiatric diagnoses were included (OR 1.66, 95% CI (1.03-2.67), p=.04).

Conclusions: Results from the analysis found no consistent evidence of an association between a child having an ASD diagnosis and that child living in a traditional versus nontraditional family. Once we control for co-occurring psychiatric disorders, our results show that a child with an ASD is slightly more likely than those without ASD to live in a traditional household. This somewhat counter-intuitive result is likely due to particularly low probabilities of living in traditional households for children with those other disorders, regardless of whether or not they have ASD. In fact, exploratory analyses suggest that having ADHD, Externalizing, and Internalizing disorders are more strongly related to the probability of not living in a traditional household than is ASD. Findings from this study hold important implications to both research and intervention for families of children with ASDs.

Repeated for emphasis: “Once we control for co-occurring psychiatric disorders, our results show that a child with an ASD is slightly more likely than those without ASD to live in a traditional household”

Not only is the “80%” figure wrong, but families with an ASD child are more likely to be in a “traditional” household.

The fact that parenting an autistic child does not lead to more divorce is not all that surprising to me. As the abstract notes, they used the National Children’s Health Survey data in the study. You may recall that this study was a hot topic for a while last year, with various groups and bloggers claiming it as evidence for an autism epidemic (note, it isn’t evidence of an epidemic at all. Actually the contrary). Amid that flury of attention, we here at LeftBrainRightBrain looked at other information in the Survey, including family structure, in Interesting information in the National Children’s Health Survey

At that time I presented the results of the question “Are the kids living in a household where the parents are married?”

69.4% of families who identified their child as autistic
74.0% of all families who responded.

D’oC also discussed Autism And Divorce in a post following a survey released by Easter Seals and the Autism Society of America which showed lower divorce rates amongst families with autistic children.

Does this mean that parenting autistic children (or parenting at all for that matter) isn’t difficult? No. Does it mean that supports are in place for autistic children and their families? No.

But, we must keep one final question in mind–Does misinformation help anyone? No.

GFCF of no benefit

19 May

This post is from Eureka Alert

A popular belief that specific dietary changes can improve the symptoms of children with autism was not supported by a tightly controlled University of Rochester study, which found that eliminating gluten and casein from the diets of children with autism had no impact on their behavior, sleep or bowel patterns.

The study is the most controlled diet research in autism to date. The researchers took on the difficult yet crucial task of ensuring participants received needed nutrients, as children on gluten-free, casein-free diets may eat inadequate amounts of vitamin D, calcium, iron and high quality protein. Unlike previous studies, they also controlled for other interventions, such as what type of behavioral treatments children received, to ensure all observed changes were due to dietary alterations. Past studies did not control for such factors. And although no improvements were demonstrated, the researchers acknowledged that some subgroups of children, particularly those with significant gastrointestinal (GI) symptoms, might receive some benefit from dietary changes.

“It would have been wonderful for children with autism and their families if we found that the GFCF diet could really help, but this small study didn’t show significant benefits,” said Susan Hyman, M.D., associate professor of Pediatrics at Golisano Children’s Hospital at the University of Rochester Medical Center (URMC) and principal investigator of the study which will be presented Saturday (May 22) at the International Meeting for Autism Research in Philadelphia. “However, the study didn’t include children with significant gastrointestinal disease. It’s possible those children and other specific groups might see a benefit.”

In response to widespread parent-reported benefits, URMC initiated the trial in 2003 to scientifically evaluate the effects of the gluten-free and casein-free diet, which eliminates wheat, rye, barley and milk proteins. Parent observation has played an important role in earlier treatment discoveries in children with autism, such as melatonin’s benefits for sleep.

Hyman’s study enrolled 22 children between 2 ½- and 5 ½-years-old. Fourteen children completed the intervention, which was planned for 18 weeks for each family. The families had to strictly adhere to a gluten-free and casein-free diet and participate in early intensive behavioral intervention throughout the study. Children were screened for iron and vitamin D deficiency, milk and wheat allergies and celiac disease. One child was excluded because of a positive test for celiac disease and one was excluded for iron deficiency. Other volunteers who were excluded were unable to adhere to the study requirements. The children’s diets were carefully monitored throughout the study to make sure they were getting enough vitamin D, iron, calcium, protein and other nutrients.

After at least four weeks on the strict diet, the children were challenged with either gluten, casein, both or placebo in randomized order. They were given a snack once weekly with either 20 grams of wheat flour, 23 grams of non fat dried milk, both, or neither until every child received each snack three times. The type of snack was given in randomized order and presented so that no one observing – including the family, child, research staff and therapy team – knew what it contained. The snacks were carefully engineered to look, taste and feel the same, which was an exercise in innovative cooking. In addition, the nutrition staff worked closely with the families to make a snack that met their child’s preferences. Casein was disguised in pudding, yogurt or smoothies and gluten in banana bread, brownies, or cookies depending on the child’s food preferences.

Parents, teachers and a research assistant filled out standardized surveys about the child’s behavior the day before they received the snack, at two and 24 hours after the snack. (If the child’s behavior wasn’t usual at the scheduled snack time, the snack would be postponed until the child was back to baseline.) In addition, the parents kept a standard diary of food intake, sleep and bowel habits. Social interaction and language were evaluated through videotaped scoring of a standardized play session with a research assistant.

Following the gluten and casein snacks, study participants had no change in attention, activity, sleep or frequency or quality of bowel habits. Children demonstrated a small increase in social language and interest in interaction after the challenges with gluten or casein on the Ritvo Freeman Real Life Rating Scale; however, it did not reach statistical significance. That means because of the small difference and the small number of participants in the study, the finding may be due to chance alone.

The investigators note that this study was not designed to look at more restrictive diets or the effect of nutritional supplements on behavior. This study was designed to look at the effects of the removal of gluten and casein from the diet of children with autism (without celiac disease) and subsequent effect of challenges with these substances in a group of children getting early intensive behavioral intervention.

Hyman said, “This is really just the tip of the iceberg. There are many possible effects of diet including over- and under-nutrition, on behavior in children with ASD that need to be scientifically investigated so families can make informed decisions about the therapies they choose for their children.”

Autism does not cause divorce

19 May

A new study at IMFAR reports:

Brian Freedman, PhD, lead author of the study and clinical director of the Center for Autism and Related Disorders at Kennedy Krieger Institute, said the findings seem to debunk a lot of the general understanding about high divorce rates among parents of children with autism. Dr. Freedman and his research team found that 64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.

This is the first scientific study (I believe) that has actually addressed this question. We can of course all recall the utterly unfounded scare stories of 80% put about by know-nothings such as Jenny McCarthy who said on an episode of Oprah:

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

and which autism organisation was that? You might not be amazed to discover its the equally know-nothing bunch at the National Autism Association.

NAA is presently conducting a national divorce survey of autism families. Several organizations and news outlets have used the often-quoted autism divorce rate of 80%–NAA hopes to confirm or update that percentage before referencing it in its program materials.

Get a clue NAA – maybe you should’ve done the research before letting rent-a-gob loose on the Oprah show.

Vaccine gestapo song lyrics–fact or fiction?

18 May

I don’t do polls as a rule, but it’s time to test some boundaries. Below are song lyrics. I’d like honest answers:

a) Sullivan made these up
b) Someone else made them up as a spoof on vaccine-refusers
c) These are serious lyrics and will be used in an upcoming vaccine choice rally

They have swastikas on their shoulders
They’re such patriotic soldiers
They’re like a militia in Montana
They’re a government agency in Atlanta

Vaccine gestapo! Vaccine gestapo!
Vaccine gestapo! Vaccine gestapo!

They’re a medical military priesthood
Just like Adolf they preach the greater good
Consciencious objectors are just little snot
Why don’t you quit complaining and go get your shots

Vaccine gestapo! Vaccine gestapo!
Vaccine gestapo! Vaccine gestapo!

can we see your papers
Have you had all your shots?
your papers please, your papers please
Have you had all your shots?
They’re got a one track mind of domination
They say vaccines are your obligation
If a bad reaction turns you into a vegetable,
They’ll sneer and tell you you’re expendable

Vaccine gestapo! Vaccine gestapo!
Vaccine gestapo! Vaccine gestapo!
Vaccine gestapo!

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.

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