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California’s Specific Learning Disabilities Counter Epidemic

19 Feb

The U.S. and California Departments of Education recently released special education data (child counts) for the 2008-2009 school year. A particular focus in the media has been a tripling of the number of students who wear a special education label of “autism” in California.

Needless to say, some probably see this as confirmation of an “autism epidemic”. For a particularly myopic and emotional (anger and fear) interpretation of this recent news story, one need go no further than “Autism Epidemic” central (AoA) and read the data-free opinion piece by Anne Dachel.

For the bigger picture in California, a look at the actual data might be in order.

California Data

For those who may not be able to see the graph of the IDEA data that most closely represents the K-12 age group as a percentage of the resident population, receiving special education services for the last ten years in California: Autism has steadily increased from .13% to .64%, Specific Learning Disabilities has steadily decreased from 5.64% to 4.41%, and totals for all disabilities has remained flat at about 9.2%.

If you believe there’s been an “autism epidemic”, and that special education data from California proves that the schools are overwhelmed, here are a two questions for you:

1. What has caused the decrease in Specific Learning Disabilities (a decrease that more than offsets the increase in autism)?

2. If the special education totals remain unchanged, why are the schools “overwhelmed”?

Work stress, burnout, and social and personal resources among direct care workers.

18 Feb

No surprise, people who have jobs caring for people with intellectual and developmental disabilities face a lot of stress. A recent paper has looked into what causes and alleviates the stress for these workers.

Work stress, burnout, and social and personal resources among direct care workers.

Gray-Stanley JA, Muramatsu N.

School of Nursing and Health Studies, Northern Illinois University, 253 Wirtz Hall, DeKalb, IL 60115, United States.
Abstract

Work stress is endemic among direct care workers (DCWs) who serve people with intellectual and developmental disabilities. Social resources, such as work social support, and personal resources, such as an internal locus of control, may help DCWs perceive work overload and other work-related stressors as less threatening and galvanize them to cope more effectively to prevent burnout. However, little is known about what resources are effective for coping with what types of work stress. Thus, we examined how work stress and social and personal resources are associated with burnout for DCWs. We conducted a survey of DCWs (n=323) from five community-based organizations that provide residential, vocational, and personal care services for adults with intellectual and developmental disabilities. Participants completed a self-administered survey about their perceptions of work stress, work social support, locus of control, and burnout relative to their daily work routine. We conducted multiple regression analysis to test both the main and interaction effects of work stress and resources with respect to burnout. Work stress, specifically work overload, limited participation decision-making, and client disability care, was positively associated with burnout (p<.001). The association between work social support and burnout depended on the levels of work overload (p<.05), and the association between locus of control and burnout depended on the levels of work overload (p<.05) and participation in decision-making (p<.05). Whether work social support and locus of control make a difference depends on the kinds and the levels of work stressors. The findings underscore the importance of strong work-based social support networks and stress management resources for DCWs.

What adds to burnout? Work overload. Not being involved in decision making. Also, levels of client functioning, mobility, and intellectual abilities are a factor. If I read the paper correctly, levels of client functioning are a bigger factor than work overload.

Supervisor support and coworker support alleviated some of the stress and burnout.

The study concludes:

Policies or interventions developed as a result of this analysis might include strategies to foster work-based social support networks (i.e., team building efforts), as well as interventions to help workers develop personal stress management resources (Tierney, Quinlan, & Hastings, 2007). Successful protocols, once identified, can contribute to improved DCW job morale and ultimately better client care.

I don’t think stress and the sources of stress come as any great surprise. However, the more information available to make notions into supported facts, the better. If this can help caregivers and caregiver organizations support in reducing workload and adding methods to alleviate stress, so much the better for all. Especially the clients.

Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the Autism and Developmental Disabilities Monitoring Network

16 Feb

Most of what we hear (especially on this blog and other autism focused sources) about the Autism and Developmental Disabilities Monitoring Network (ADDM) is, well, autism related. Mostly we get the prevalence estimates for the CDC from this source. Sometimes I admit, I forget that “and Developmental Disabilities” is in there.

A recent paper shows that the ADDM is more broad than just autism. And, at the same time, gives some interesting autism information. The paper is: Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the Autism and Developmental Disabilities Monitoring Network

Here is the abstract:

Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the Autism and Developmental Disabilities Monitoring Network.

Kirby RS, Wingate MS, Van Naarden Braun K, Doernberg NS, Arneson CL, Benedict RE, Mulvihill B, Durkin MS, Fitzgerald RT, Maenner MJ, Patz JA, Yeargin-Allsopp M.

Department of Community and Family Health, College of Public Health, University of South Florida, 13201 Bruce B. Downs Blvd, MDC56, Tampa, FL 33612, United States.
Abstract

AIM: To estimate the prevalence of cerebral palsy (CP) and the frequency of co-occurring developmental disabilities (DDs), gross motor function (GMF), and walking ability using the largest surveillance DD database in the US.

METHODS: We conducted population-based surveillance of 8-year-old children in 2006 (N=142,338), in areas of Alabama, Georgia, Wisconsin, and Missouri. This multi-site collaboration involved retrospective record review at multiple sources. We reported CP subtype, co-occurring DDs, Gross Motor Function Classification System (GMFCS) level, and walking ability as well as CP period prevalence by race/ethnicity and sex.

RESULTS: CP prevalence was 3.3 (95% confidence interval [CI]: 3.1-3.7) per 1000 and varied by site, ranging from 2.9 (Wisconsin) to 3.8 (Georgia) per 1000, 8-year olds (p<0.02). Approximately 81% had spastic CP. Among children with CP, 8% had an autism spectrum disorder and 35% had epilepsy. Using the GMFCS, 38.1% functioned at the highest level (I), with 17.1% at the lowest level (V). Fifty-six percent were able to walk independently and 33% had limited or no walking ability.

INTERPRETATION: Surveillance data are enhanced when factors such as functioning and co-occurring conditions known to affect clinical service needs, quality of life, and health care are also considered.

I will admit that I did not know that the prevalence of ASD amongst those with cerebral palsey was so high, 8%. It is interesting to note that there is a geographic variation in the prevalence estimates of CP, from 2.9 to 3.8 per 1000. This is not quite as large as the spread in autism prevalence estimates by state, but it is pretty big.

A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

15 Feb

I bring this up because there is a common argument that the autism “rates” in places like Denmark and Sweden are much lower than those in the US and elsewhere. This is used to try to negate studies using those country’s populations in, for example, showing that there is no increased risk from thimerosal or the MMR vaccine. This error often stems from comparing “incidence” to “prevalence”.

Is the autism prevalence low in Denmark? Not really. This paper just out (and other reports previously, including this one cited by Steven Novella) show a prevalence pretty comparable to the US.

J Autism Dev Disord. 2011 Feb 11. [Epub ahead of print]
A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

Parner ET, Thorsen P, Dixon G, de Klerk N, Leonard H, Nassar N, Bourke J, Bower C, Glasson EJ.

Institute of Public Health, Department of Biostatistics, University of Aarhus, Aarhus, Denmark.
Abstract

Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods, case ascertainment and age at diagnosis. This study compared prevalence statistics for two distinct geographical regions, Denmark and Western Australia, both of which have had population-based registers and consistent classification systems operating over the past decade. Overall ASD prevalence rates were higher in Denmark (68.5 per 10,000 children) compared with Western Australia (51.0 per 10,000 children), while the diagnosis of childhood autism was more prevalent in Western Australia (39.3 per 10,000 children) compared with Denmark (21.8 per 10,000 children). These differences are probably caused by local phenomena affecting case ascertainment but influence from biological or geographical factors may exist.

Prevalence of 68.5 per 10,000 children. A previous estimate was 80 per 10,000. Generation Rescue claimed a rate of 1 in 2200 (4.5 per 10,000) when they tried to make the case that…oh I bet you can guess…that vaccines cause autism. The 1 in 80 figure was already published, so I doubt they will change their story given yet another study.

Sloppy science – a perfect example of how the anti-vaccine crowd will listen to anything

11 Feb

Both Age of Autism and David Kirby have recently reported on a new review paper with Age of Autism describing it as ‘pretty interesting’ and David repeating a part of the abstract:

Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination.

So, should we all in the skeptic camp be reaching for our humble pie and our knife and fork? Not exactly. Lets take a look at the contents of this paper. Lets start here:

The vaccine organism itself could be a culprit. For example, one hypothesis of the cause of autism is that the pertussis toxin in the DPT vaccine causes a separation of the G-alpha protein from retinoid receptors in genetically at-risk children (Farfel et al., 1999; Megson, 2000). The pertussis toxin creates a chronic autoimmune monocytic infiltration of the gut mucosa lamina propia and may disconnect the G-alpha protein pathways, leaving some G-alphamodulated pathways unopposed. In turn, the non-specific branch of the immune system is turned on and, without retinoid switching, cannot be down regulated.

Wow, blinded with the cool science yet? No, me neither. Go back to line one where it says ‘one hypothesis’. All that follows from that point is mere opinion. There’s no science to back it up.

Another organism of suspect is the live measles virus…

Yeah except its really not. The issues with the Wakefield hypothesis are so many and so thoroughly debunked, it really isn;t worth my time or yours going through them again and again.

There is evidence that Thimerosal (which is 49% ethyl mercury) is indeed harmful. Since the 1930s, Thimerosal has been extensively used as an antibacterial agent in vaccines (Geier et al., 2007). Thimerosal has been implicated as a cause of autism. Not only is every major symptom of autism documented in cases of mercury poisoning but also biological
abnormalities in autism are very similar to the side effects of mercury poisoning itself (Bernard et al., 2001)

Oh dear. Reliance on more thoroughly debunked rubbish in the form of well, anything by the Geier’s and the ridiculous Bernard ‘paper’. I’m happy to go through why these are rubbish but I think I’d be preaching to the converted.

The rest of the paper is a rogues gallery of debunked and fringe science. Helen Ratajczak cites the Geier’s numerous times, DeSoto and Hitlan, Nataf and Rossignol to name but a few. This isn’t a paper so much as an advert for the sort of poor science that was examined in the Autism Omnibus proceedings and roundly rejected by the Special Masters. For goodness sake, she even cites David Ayoub of the Black Helicopter infamy.

When it comes to this paper – handle with extreme caution. Its toxic rubbish.

Chelation: oral not very effective, IV causes brain fog

10 Feb

One very common therapy in the Complementary and Altenative Medicine (CAM) world is chelation. It has been very popular amongst DAN doctors and other CAM practitioners in the autism community, largely based on the mistaken ideas that (a) autism symptoms are similar to mercury poisoning and (b) autism is caused by mercury (from vaccines and elsewhere).

I’ll say it here and I’ll repeat it at the end of this piece: any parent who believes his/her child is a victim of heavy metal poisoning should take that child to a medical toxicologist. Find an expert in toxicology. This is not a project to take on yourself and your child deserves the best. Find someone trained and experienced in toxicology. You can search by state or country.

That said, here are two articles I’ve run across recently which reminded me of why people should seek experts. First, the most common oral chelating agent (DMSA, succimer) is not very effective against mercury. Second, IV chelation can result in “brain fog” lasting days.

An NIH Research Matters article titled “Lead Poisoning Treatment Less Effective for Mercury” discusses measurements of blood mercury levels in children in a trial of chelation for high lead levels.

A drug commonly used to treat lead poisoning is relatively ineffective at removing mercury from the blood. The finding provides insight into a compound currently being used as an alternative therapy for autism.

Here are the concluding paragraphs:

A research team led by Dr. Walter Rogan at NIH’s National Institute of Environmental Health Sciences (NIEHS) sought to investigate whether succimer can also remove mercury from the blood. The team used blood samples and data from 767 children, aged 12 to 33 months, who participated in an earlier clinical trial of children who were treated for high blood levels of lead.

The research team measured mercury concentrations in blood samples collected prior to treatment, a week after beginning treatment with succimer or placebo, and again after 3 month-long courses of treatment. The study was funded by NIEHS, NIH’s National Institute for Minority Health and Health Disparities (NIMHD) and the Centers for Disease Control and Prevention. The results appeared online on October 1, 2010, in the Journal of Pediatrics.

The researchers found that, after 1 week, succimer lowered blood concentrations of mercury by 8%. In contrast, it reduced blood lead concentration by 42%. After 5 months, those taking succimer had blood mercury concentrations about 20% lower than the control group. However, the therapy had only slowed the rate at which the children accumulated mercury.

“Succimer is effective for treating children with lead poisoning, but it does not work very well for mercury,” Rogan says. “Although succimer may slow the increase in blood mercury concentrations, such small changes seem unlikely to produce any clinical benefit.”

In an article in Integrative Medicine, Joseph Pizzorno (a leading naturopath) talks about his experience with IV DMPS.

Unfortunately, my first experience with IV DMPS at the normal dosage (250 mg) resulted in significant “brain fog”. I experienced obvious impaired memory and decreased cognitive capacity for several hours (my wife asserts she noticed effects for a full week).

He goes on to tell that even though he believes that overall he is doing better due to lower mercury levels, his team asked him to refrain from IV chelation before meetings. His colleagues were able to see the obvious adverse effects (Dr. Pizzorno refers these as “adverse IV chelation effects”)

I repeat this here: any parent who believes his/her child is a victim of heavy metal poisoning should take that child to a medical toxicologist. Find an expert in toxicology. This is not a project to take on yourself and your child deserves the best. Find someone trained and experienced in toxicology. You can search by state or country.

Autistic young adults missing out on much-needed services

9 Feb

Prof. Paul Shattuck, of Washington University in Saint Louis, is one of those people I greatly admire. He has repeatedly taken on studies of groups who are often overlooked in the majority of studies.

In a just release paper, Prof. Shattuck has studied what happens to young autistic adults as they transition out of high school. Sadly, about 40% stop receiving services post high school. Levels of services for speech therapy, mental health, medical diagnostics and case management all dropped notably after high school.

Low income and African American young adults were much more likely to not receive services.

Shattuck also found that the odds of not receiving any services were more than three times higher for African-American young adults compared with white young adults and more than five times higher for those with incomes of $25,000 or less relative to those with incomes over $75,000.

Rather than summarize this work here, let me present the news release. Follow the link for a video press release with Prof. Shattuck.

What happens to young adults with autism spectrum disorders (ASDs) once they graduate high school and are no longer entitled to services?

“National, state and local policy makers have been working hard to meet the needs of the growing numbers of young children identified as having an ASD,” says Paul Shattuck, PhD, professor at the Brown School at Washington University in St. Louis. “However, there has been no effort of a corresponding magnitude to plan for ensuring continuity of supports and services as these children age into adulthood.”

In a first-of-its-kind study, Shattuck looked at rates of service use among young adults with an ASD during their first few years after leaving high school. He found that 39.1 percent of these youths received no speech therapy, mental health, medical diagnostics or case management services.

Shattuck also found that the odds of not receiving any services were more than three times higher for African-American young adults compared with white young adults and more than five times higher for those with incomes of $25,000 or less relative to those with incomes over $75,000.

In his study, published in the current issue of the Archives of Pediatric and Adolescent Medicine, Shattuck looked at medical, mental health, speech therapy and case management services.

He found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management and 9.1 percent for speech therapy.

This compares with service use while in high school: 46.2 percent received mental health services, 46.9 percent had medical services, 74.6 percent were getting speech therapy and 63.6 percent had a case manager.

Shattuck says that the years immediately following the age at which students typically exit from high school are pivotal for all youths.

“A positive transition creates a solid foundation for an adaptive adult life course and a negative transition can set the stage for a pathway fraught with developmental, health and social difficulties,” he says.

“Youths with ASDs are especially vulnerable during this period because of their challenges with communication and social interaction, greater reliance on others for aid and high rates of health and mental health problems.”

Shattuck notes that there is a dearth of nationally representative data on the prevalence and correlates of service use among young adults with ASDs.

“Basic descriptive data on the prevalence and patterns of service use are necessary for planning by policy makers and administrators,” Shattuck says. “Knowledge of service use can help identify underserved populations and plan targeted services.

“Estimates of service use and correlates will help clinicians, service providers and family members be more informed and better prepared as they try to help teens with ASDs navigate the transition from adolescence to young adulthood,” he says.

Data for this report came from the National Longitudinal Transition Study 2 (NLTS2), a 10-year study conducted from 2000-2010 by SRI International for the U.S. Department of Education that followed more than 11,000 youths enrolled in special education as they aged into adulthood.

The study included 920 youths enrolled in the special education autism category at the start of data collection in May 2001.

The study’s co-authors are Mary Wagner, PhD, principal scientist in the Center for Education and Human Services at SRI International, and Sarah Narendorf, Paul Sterzing and Melissa Hensley of Washington University in St. Louis.

Prof. Paul Shattuck discussing his paper on lack of services for young autistic adults

9 Feb

I recently posted the press release for Prof. Shattuck’s latest paper. At the time, the video was only on his university’s webpage. Now that the video has been posted to YouTube, I can embed it and you can hear Prof. Shattuck telling you about the important points himself:

I apologize that there do not appear to be an option for subtitles.

GI and autism studies ‘none of these trials appeared to be of high quality’

8 Feb

A new paper is due out soon looking at the available literature on GI and autism.

The significance of the association between many gastrointestinal (GI) pathologies and autism has yet to be discovered. The aim of the present study was to review available evidence documenting any link between autism and GI histopathology in children

I’ve only got the abstract to go by but even that is fairly damning.

Eight studies have reported the histopathological features of the GI tract in children with autism and fulfilled inclusion criteria. In general, none of these trials appeared to be of high quality. Apart from intestinal lymphonodular hyperplasia, the majority of these findings were not consistent….GI pathological findings in children with autism have been inconsistent. The present available evidence does not support or refute a link between GI histopathology and autism in children. The significance of intestinal lymphonodular hyperplasia in these children is unknown.

I’m hoping to get the full paper soon. It would be interesting to know what these eight studies were.

Update

Here’s the eight papers of low quality:

Furlano RI, Anthony A, Day R, et al. Colonic CD8 and gamma delta Tcell
infiltration with epithelial damage in children with autism. J Pediatr
2001;138:366–72.

Wakefield AJ, Anthony A, Murch SH, et al. Enterocolitis in children
with developmental disorders. Am J Gastroenterol 2000;95:2285–95.

Torrente F, Ashwood P, Day R, et al. Small intestinal enteropathy with
epithelial IgG and complement deposition in children with regressive
autism. Mol Psychiatry 2002;7:375–82. 34.

Ashwood P, Anthony A, Pellicer AA, et al. Intestinal lymphocyte
populations in children with regressive autism: evidence for extensive
mucosal immunopathology. J Clin Immunol 2003;23:504–17.

Ashwood P, Anthony A, Torrente F, et al. Spontaneous mucosal
lymphocyte cytokine profiles in children with autism and gastrointestinal
symptoms: mucosal immune activation and reduced counter regulatory
interleukin-10. J Clin Immunol 2004;24:664–73.

Wakefield AJ, Ashwood P, Limb K, et al. The significance of ileocolonic
lymphoid nodular hyperplasia in children with autistic spectrum
disorder. Eur J Gastroenterol Hepatol 2005;17:827–36.

Torrente F, Anthony A, Heuschkel RB, et al. Focal-enhanced gastritis in
regressive autism with features distinct from Crohn’s and Helicobacter
pylori gastritis. Am J Gastroenterol 2004;99:598–605.

14. DeFelice ML, Ruchelli ED, Markowitz JE, et al. Intestinal cytokines in
children with pervasive developmental disorders. Am J Gastroenterol
2003;98:1777–82.

No surprises there.

Recent autism prevalence studies point to variability in methodology and bias

8 Feb

In Prevalence of autism spectrum disorders and influence of country of measurement and ethnicity , the authors look at ASD prevalence by country and ethnicity. They hypothesize that “methodological factors, socioeconomic variables, and bias” play a role in the variability in autism prevalence.

The disparities by geography and by ethnicity within the data reported within the U.S. has been a big concern of mine for some time. Clearly there is not an obvious difference between, say, New Jersey (with an estimated prevalence of 10.6/1,000) and Alabama (with an estimated prevalence of 6/1,000) to account for the large difference in estimated prevalence.

Background
The prevalence of autism spectrum disorders (ASD) is generally somewhat lower in countries outside of North America and Europe. While there are culture-specific patterns of social cognitive processing, the influence of such patterns upon ASD prevalence has yet to be fully explored.
Methods
A comprehensive literature search for original articles reporting ASD prevalence was undertaken. Data across studies were compared with a particular focus on variables of geographic residence and ethnicity.
Results
ASD prevalence varies across countries in a manner that appears to suggest that the greatest influence is due to methodological variables. The nature of a potential influence of culture-specific patterns of cognitive processing upon prevalence remains unknown. The available little data concerning the association between ethnicity and prevalence are limited to studies within the United States (US) showing differences in children of Hispanic descent relative to Whites, a finding for which a definitive explanation is lacking.
Conclusions
Available evidence suggests that methodological factors are largely responsible for differences in ASD prevalence across studies. The much discussed increase in prevalence in ASD has been observed worldwide, suggesting that the refinement of diagnostic methodology and/or broadening diagnostic concept is not limited to Western countries. Within individual countries, only in the US has the influence of ethnicity upon ASD prevalence been examined in depth. In the US, children of Hispanic descent have the lowest prevalence of ASD, while Whites tend to have the highest prevalence of ASD. Hypothesized etiological factors for such prevalence differences include methodological factors, socioeconomic variables, and bias.

In Racial Disparities in Community Identification of Autism Spectrum Disorders Over Time; Metropolitan Atlanta, Georgia, 2000-2006. African American (non Hispanic Black) students are less likely than Non Hispanic White students to be identified with “less severe” ASD’s. This even after controlling for socioeconomic status.

Racial Disparities in Community Identification of Autism Spectrum Disorders Over Time; Metropolitan Atlanta, Georgia, 2000-2006.

Jarquin VG, Wiggins LD, Schieve LA, Van Naarden-Braun K.

From the Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.
Abstract

OBJECTIVE: Past research indicates that non-Hispanic black (NHB) children are less likely than non-Hispanic white (NHW) children to have an autism spectrum disorder (ASD) diagnosis, even if they seem to meet criteria for the disorder. This study examined differences in community identification of ASDs between NHB and NHW children identified by a population-based surveillance system.

METHODS: Participants were identified as an ASD surveillance case by the Metropolitan Atlanta Developmental Disabilities Surveillance Program in surveillance years 2000, 2002, 2004, and 2006. Health and education records were abstracted and reviewed to determine ASD surveillance case status; community identification was defined by a documented ASD diagnosis, special education eligibility, and behaviors noted in records. Children were placed in 1 of 5 mutually exclusive categories on the basis of ASD specificity.

RESULTS: Total ASD prevalence was higher for NHW than NHB children, but NHB children were more likely than NHW children to have autistic disorder and autism eligibility at a public school documented in records. NHB children were less likely than NHW children to have pervasive developmental disorder-not otherwise specified and Asperger’s disorder documented in records, even after controlling for socioeconomic status. NHB children were more likely than NHW children to have co-occurring intellectual disability.

CONCLUSION: NHB children were less likely than NHW children to have been identified with less severe ASDs, which might have prevented or delayed intervention services that would have catered to their needs. This study illustrates the need for continued professional education, particularly concerning milder ASDs in minority groups.

As a society, we have decided that autistic students often need educational supports distinct from those of children with other disabilities. Clearly if we are to serve our students appropriately, we should be accurately identifying each student’s disability (where they exist). The fact that we are not uniform in identifying autistic students indicates that we have far to go in this regard.