At the Boston Conservatory, autistic students learn from music lessons

26 Feb

From Boston.com: At the Boston Conservatory, autistic students learn from music lessons

The Boston Conservatory is renowned for its intensive training in the performing arts, but on Saturday mornings, this Fenway institution offers a unique program: providing music lessons to children and young adults with autism.

I really appreciate it when people work to give more than just music therapy, but music lessons. In some cases it may take a lot of patience, but if a person is moved by music, it is worth the time.

The article is short, so if I quote much I’ll basically be copying the entire piece. Read more here.

The Arc Action Alert – Do You Want “Congregate Care”?

25 Feb

The Arc sends out periodic Action Alerts. I just got this one in my email inbox. Do you think the government should go back to segregated living and institutions for people with intellectual and developmental disabilities? Now is your chance to add your comments and be heard.

Do You Want “Congregate Care”?
Then now is the time to counter calls for institutions and other segregated settings

institution for people with intellectual and developmental disabilities. The Administration on Developmental Disabilities (ADD) has just extended the deadline for submitting testimony for its national listening sessions. And people who support institutions are wasting no time in letting ADD know what they want. In fact, VOR is calling on its membership to “Tell ADD to support Choice” in residential settings for people with intellectual and developmental disabilities.

Please take a minute to provide your comments to ADD and let them know that segregated, congregate living for people with disabilities should NOT be a choice. We know all too well that abuse, neglect and other forms of denigration are far more likely to occur in large congregate settings. Integrated, community based housing is the only policy the federal government should be supporting.

It’s critical that ADD hear from many people with intellectual and developmental disabilities or their family members. Please submit your comments before March 4 at:
http://www.envision2010.net/comment_submit.php

Thank you in advance for your advocacy.

Brian Deer nominated for Specialist Journalist of the Year and News Reporter of the Year

25 Feb

Brian Deer, the investigative journalist who broke the story of Andrew Wakefield’s improprieties in his autism research, has been nominated for “Specialist Journalist of the Year” and “News Reporter of the Year”. The Press Gazette lists all the nominees in their piece The Press Awards: The Times leads with 18 nominations. For other non-UK residents, I’ve been told that The Press Awards are akin to the Pulitzer Prize in the US.

The article doesn’t cite the reason for Mr. Deer’s nominations, but it is a pretty safe bet that his articles on Andrew Wakefield in the BMJ had a lot to do with it. Links to those articles are below:

Secrets of the MMR scare: How the case against the MMR vaccine was fixed

Secrets of the MMR scare : How the vaccine crisis was meant to make money

Secrets of the MMR scare: The Lancet’s two days to bury bad news

Congratulations, Mr. Deer. It was a lot of hard work. Glad to see it recognized.

Another anti-vaccine rally fizzles

24 Feb

A handful of “outraged” anti-vaccine activists occupied part of the sidewalk at the corner to 6th Ave. and 52nd St. today and listened to other angry anti-vaccine activists promote an anti-vaccine book and denounce Bill Gates.

Witnesses report 18 participants at an event which promoters predicted would draw “tens of thousands” of parents supposedly angry at the portrayal of the people they follow. One New York-based anti-vaccine group’s press release  proclaimed “Bill Gates: We are not Child Killers” and read:

The protest and press conference against Microsoft founder and Chairman Bill Gates challenges his controversial remarks on national TV that those who question vaccine safety “kill children.” The attendees are demanding an immediate apology from Gates. The press conference will take place outside the Microsoft Executive Offices at 1290 Avenue of the Americas (corner of 52nd Street) in Manhattan. These groups will hold additional protests in Manhattan, Long Beach and Omaha where Gates will be speaking publically.

Gates’s actual words, spoken in a February 4 CNN interview, were aimed at leaders in the anti-vaccine movement who mislead parents into leaving their children vulnerable to dangerous diseases.

Well, Dr. Wakefield has been shown to have used absolutely fraudulent data. He had a financial interest in some lawsuits, he created a fake paper, the journal allowed it to run. All the other studies were done, showed no connection whatsoever again and again and again. So it’s an absolute lie that has killed thousands of kids. Because the mothers who heard that lie, many of them didn’t have their kids take either pertussis or measles vaccine, and their children are dead today. And so the people who go and engage in those anti-vaccine efforts — you know, they, they kill children. It’s a very sad thing, because these vaccines are important.

At least one anti-vaccine press release called on “tens of thousands of outraged parents” to participate in a multi-city event.

The rally was organized by Louise Kuo Habakus and Mary Holland, authors of Vaccine Epidemic, which has sold about 1,300 copies. Holland is an anti-vaccine lawyer. Habakus is an anti-vaccine activist who can be seen here on stage with a guy who sang “Vaccine Gestapo” at last year’s anti-vaccine rally in Chicago’s Grant Park. Sample lyrics:

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!

That event drew about 100 participants to hear disgraced former gastroenterologist Andrew Wakefield denounce vaccines.

A spokesperson for Gates emailed us today to say “The Bill & Melinda Gates Foundation believes in the strong evidence behind the efficacy and safety of vaccines. There is overwhelming medical consensus that autism is not caused by vaccines.”

The southeast corner of 6th Ave. and 52nd St. in Manhattan where not much happened today.

Motor vehicle accidents, suicides, and assaults in epilepsy: A population-based study

24 Feb

I seem to be in epidemiology mode today, so I decided to post this abstract that I found interesting. Are people with epilepsy more prone to car accidents or suicide? Apparently not. Are they more prone to being assaulted? Assaulted as in resulting in injury? Yes.

I am unclear how many factors they were testing, so it is difficult to know how much these could be by chance.

Motor vehicle accidents, suicides, and assaults in epilepsy: A population-based study.

Kwon C, Liu M, Quan H, Thoo V, Wiebe S, Jetté N.

From the Departments of Clinical Neurosciences (C.K., S.W., N.J.) and Community Health Sciences (H.Q.), University of Calgary, Calgary; Alberta Health Services (M.L.), Calgary; Dalhousie University (V.T.), Halifax, Canada; and Harvard School of Public Health (C.K.), Boston, MA.
Abstract

BACKGROUND: The goal of our study was to compare the incidence of motor vehicle accidents (MVA), attempted or completed suicides, and injuries inflicted by others between individuals with and without epilepsy.

METHODS: Individuals with and without epilepsy were identified using linked administrative databases between 1996 and 2003 in a Canadian health region with a 1.4 million population. We used a validated epilepsy case definition: anyone who had 2 physician claims, one hospitalization, or one emergency room visit coded with an International Classification of Diseases (ICD)-9-CM or ICD-10 epilepsy code any time during a 2-year period. Four subjects without epilepsy were matched to one patient with epilepsy by age (within 1 year) and sex. The incidence of MVAs, attempted or completed suicides, and inflicted injuries was assessed in 2003-2004. Outcomes were adjusted using the Elixhauser comorbidity index.

RESULTS: A total of 10,240 individuals with epilepsy and 40,960 individuals without epilepsy were identified. Mean age was 39.0 ± 21.3 years (range 0.12-99.4) and 48.5% were female. One-year odds ratios before and after adjustment for comorbidity were 1.83 (95% confidence interval [CI] 1.33-2.54) and 1.38 (95% CI 0.97-1.96) for MVAs, 4.32 (95% CI 2.79-6.69) and 1.32 (95% CI 0.81-2.15) for attempted or completed suicides, and 3.54 (95% CI 2.66-4.72) and 1.46 (95% CI 1.04-2.03) for injuries inflicted by others.

CONCLUSION: In this cohort-controlled population-based study, once important medical and psychiatric comorbidities were adjusted for, people with epilepsy were not more likely to attempt suicide or experience MVAs, but were still more likely to be assaulted compared to those without epilepsy.

Prevalence of intellectual disability: A meta-analysis of population-based studies

24 Feb

Autism prevalence gets a lot of discussion here and elsewhere on blogs. But what about other prevalence numbers? Say, for intellectual disability? This is important on its own in this discussion. Intellectual disability (ID) is more common amongst autistics than in the general population. In addition, it is worth noting that even with something like ID, prevalence values vary.

In general, the prevalence of ID is about 1%. Similar to autism prevalence. The prevalence of ID varies by country and by income, and by age.

Prevalence of intellectual disability: A meta-analysis of population-based studies

Abstract

Intellectual disability is an extremely stigmatizing condition and involves utilization of large public health resources, but most data about its burden is based on studies conducted in developed countries. The aim of this meta-analysis was to collate data from published literature and estimate the prevalence of intellectual disability across all such studies. The review includes studies published between 1980 and 2009, and includes data from populations that provided an overall estimate of the prevalence of intellectual disability. Meta-analysis was done using random effects to account for heterogeneity. Sub-group analyses were also done. The prevalence of intellectual disability across all 52 studies included in the meta-analysis was 10.37/1000 population. The estimates varied according to income group of the country of origin, the age-group of the study population, and study design. The highest rates were seen in countries from low- and middle income countries. Studies based on identification of cases by using psychological assessments or scales showed higher prevalence compared to those using standard diagnostic systems and disability instruments. Prevalence was higher among studies based on children/adolescents, compared to those on adults. Higher prevalence in low and middle income group countries is of concern given the limitations in available resources in such countries to manage intellectual disability. The importance of using standardized diagnostic systems to correctly estimate the burden is underlined. The public health and research implications of this meta-analysis have been discussed.
Research highlights

The prevalence of intellectual disability across the world is around 1%. The prevalence is almost two times more in low and middle income countries compared to high income countries. Highest prevalence was seen in child and adolescent population. Using standardized diagnostic instruments and disability measurements leads to lower estimates compared to simple psychological assessment tools even if confirmed by clinicians.

emphasis added.

As with autism prevalence, we need to look at these numbers in context: the culture of the country, the methods used, diagnostic criteria.

Whenever you hear someone say something like “One in 110 children born today will have autism” you are listening to someone who doesn’t really understand the “estimate” part of prevalence estimate.

Brief Report: Prevalence of Pervasive Developmental Disorder in Brazil: A Pilot Study

24 Feb

Real data on autism prevalence around the world is scant. Many countries do not track accurately (including the US) and few countries have reported on autism prevalence.

So, while this is only a “pilot study”, I was intrigued to read that someone was reporting on autism prevalence in Brazil:

Brief Report: Prevalence of Pervasive Developmental Disorder in Brazil: A Pilot Study.

Paula CS, Ribeiro SH, Fombonne E, Mercadante MT.

Developmental Disorder Post Graduation Program, Mackenzie Presbyterian University, Rua da Consolação, 930. Edifício 38 Secretaria de Pós-Graduação em Distúrbios do Desenvolvimento, São Paulo, SP, 01302-907, Brazil, csilvestrep09@gmail.com.
Abstract

This pilot study presents preliminary results concerning the prevalence of Pervasive Developmental Disorder (PDD) in South America. It was a three-phase study conducted in a typical town in Southeast Brazil. Case definition was based in a combination of standardized instruments and clinical evaluations by experts. The prevalence of PDD was 27.2/10,000 (95% CI: 17.6-36.8) and some hypotheses were raised to explain this low frequency. Clinical findings of PDD cases were consistent with previous data, such as, male preponderance, more children diagnosed with PDD-NOS than with autistic disorder, and half of them born from older mothers. Moreover, the study raised concerns about treatment of cases, because identification of PDD had been late and access to services has been very limited.

The prevalence is low: about 0.27% for all PDD’s. About 1/4 that of the US or the UK.

Just in this year (2011), 4 other papers have come out on autism prevalence:

Denmark and Australia: 0.685% and 0.51%, respectively.

Autism prevalence varies by race, even within a single US municipality (Atlanta). In the San Francisco Bay area, autism prevalence is about 0.47%, and again varies with race/ethnicity. Yes, the San Francisco bay area has a prevalence about 1/2 the national average.

While more of a review, this paper discusses how autism prevalence rates vary by country

Autism prevalence estimates vary. They vary with time, they vary with place, they vary with ethnicity, they vary with socio-economic status. I don’t think it is hopeless to try to pull causation inferences from prevalence data, even administrative prevalence data like education data or the CDDS data. It is hard though. There are obviously a number of factors at play. Many social factors included. And that makes it really hard to interpret what all these data mean.

As a final aside, for those trying to work these latest data from Brazil into the “vaccine hypothesis”, the vaccine schedule for Brazil is here. They have a lot of vaccines, including the birth dose of HepB and thimerosal containing vaccines. The low prevalence in this pilot study do not support the hypothesis.

Will You Let Politicians Sacrifice Your Child?

23 Feb

Will You Let Politicians Sacrifice Your Child? is the title of an article by Howard Margolis.

The piece brings up some very good points and is well worth the read. In the US, we are facing cutbacks on support for the disabled. The time to fight about this is now.

Unless parents of children with special needs do something quickly, unless they start to deal with budgetary problems and stop buying into the false belief that this country is broke, their children will be sacrificed on the unfounded altars of “tax cuts for the rich” and “austerity” for everyone else.

There is at least one point I disagree with, but the idea that we have the money to continue the levels of support we have (which are not high), is a good one:

This country is rich. It has plenty of money. If it didn’t, it couldn’t have given huge tax cuts to the upper 1% of wealthy (who get about 24% of America’s annual income). If it didn’t, it couldn’t give politicians such rich pensions. If it didn’t, corporations couldn’t get away with paying little or no taxes. If it didn’t, hedge fund managers wouldn’t have a 15% tax cap on most of their income. If it didn’t, Wall Street and banker bonuses wouldn’t be astronomical. If it didn’t, Albert Pujols couldn’t hold out for $300,000,000. If it didn’t, in 2010 the U. S. Chamber of Commerce couldn’t have spent more than $70,000,000 to defeat the Democrats.

He quotes an earlier piece he wrote, and I repeat it here:

Ignore bumper sticker phrases like ‘reduce taxes,’ ‘higher standards,’ ‘throw the bums out.’ These are usually shorthand phrases for inflaming anger or bigotry and gaining political power, not phrases for strengthening knowledge or insight and improving lives…. Instead, read about and study policies that will help your children and then become politically active in supporting them. Keep holding politicians accountable: keep asking them questions, keep examining their votes, keep examining the bills they offer, keep calling them, keep withholding support for those whose actions don’t immediately help your child and other children, keep supporting those whose actions do, join and actively support organizations that support your views. Consider running for office so you can institute and support policies that help children. Learn, learn, learn. And share your learning. Keep writing to newspapers and magazines and blogs. Call radio shows. Let them know what you think and why: provide compelling facts and logic, not bitterness and bluster. Help schools to get the resources they need to help your child and all children; then keep holding the schools accountable for their actions. If they have the resources, they should have the accountability. Do the same for state agencies that are supposed to serve adults with disabilities…. And so you must advocate hard for your child’s needs, for the needs of all children. And you must keep advocating: respectfully, forcefully, intelligently, knowledgeably, and persistently.

State budgets, local budgets, federal budgets, school budgets–they are all facing a decline due to lost revenue. That just means that now is the time to fight.

Again, read the full piece , it’s worth it.

Social determinants of state variation in special education participation among preschoolers with developmental delays and disabilities

23 Feb

Sometimes things we think should be constant aren’t. This is very clear with autism, where “rates” vary with time and geography. Anyone have a reason why the autism prevalence in Alabama is almost 1/2 that of New Jersey?

These sorts of issues intrigue me. So when a paper showed up recently in one of my pubmed searches, I had to take a look.

Social determinants of state variation in special education participation among preschoolers with developmental delays and disabilities

Children with developmental disabilities are at risk for secondary complications and lower academic performance, which contributes to lower health and well-being and may be ameliorated by access to special education services. This paper examines state variability in preschool special education participation among a United States population-based cohort with parent-reported developmental delays and disabilities. Analyses explore the extent to which observed variability can be explained by state socio-economic attributes and special education policy and funding. Rates of special education varied significantly across states and were highest in states with least income inequality and lowest in states with most income inequality. Place variation in preschool special education participation stems, in part, from child characteristics, but to a larger extent, from state socio-economic attributes.

Preschool programs for special ed kids have a wide variability in the attendance rates. Here’s a map that shows this variability (click to enlarge):



State differences in preschool special education participation among a national sample of 3–5 year olds (n=2435) with developmental delays and disabilities.

Being “non poor” or having a more “severe” condition is associated with attending special ed preschools. Where the funding comes from (state vs. local) has an impact on how many kids attend special ed preschool.

I don’t consider this study to be the most rigorous possible, but it does give us a view that social factors can have a large impact on issues such as special education participation.

Age of Autism have a good old cry on Twitter

22 Feb

Back story: as Sully blogged the other day an American political cartoon strip had a bit of a dig at the anti-vaccine brigade. This provoked the following response from Age of Autism:

Yeah, thats right, Age of Autism truly see themselves as a victimised minority group. No really. They do. They’re putting themselves on the same footing as every Suffragette, every victim of Apartheid, every disabled activist and every poverty stricken member of a developing country thats ever lived.

Age of Autism have a slogan ‘the bull stops here’

and they’re absolutely right – thats exactly where the bull stops. In fact, it not only stops, it takes its slippers off, puts its feet up and stays for ever.

Age of Autism, you really need to get a grip. Maybe a name change might help (click for bigger).

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