The Autistic Me

The conclusion of this column makes a point I've stated repeatedly: we are getting better at diagnosing “autism” — while the criteria also keep changing. Autism Prevalence Is Now At 1 In 50 Children - Forbes : You will probably see a lot of headlines about the 1 in 50. Some organizations might even try to use those numbers to scare people, to talk about an “epidemic” or a “tsunami.” But if you look at the numbers and the report itself, you’ll see that overall, the numbers of people born with autism aren’t necessarily increasing dramatically. It’s just that we’re getting better and better at counting them. The next step is getting better at accepting autistic people, seeing their potential, and ensuring the supports and resources they need to fulfill that potential.

Over at  Just a 'Lil Blog  (a blog I recommend reading) there is the following: Interview with a Unicorn How did we come to be in front of the camera? Well, it started with the University of Pittsburgh. See, they're doing a study on the effects of environment on the prevalence or symptoms of autism in the surrounding area. Apparently Pittsburgh is quite a little hotspot for it, and so this study is geared toward…well…something about the environment...in their words, "The Research Study of Environmental Risk Factors for Childhood Autism is a multi-year study which began in 2010. It is being conducted in southwestern Pennsylvania (Allegheny, Armstrong, Beaver, Butler, Washington and Westmoreland Counties) by the University of Pittsburgh's Graduate School of Public Health. The aim of the study is to help identify environmental and other factors that may put children at risk for developing conditions within the ASDs." — from http://blogginglily.blogspot.com/20...

Yes, the media are covering the news that autism rates are skyrocketing, often failing to distinguish the rates of diagnoses from the rates of incidence. Quite simply, we have no idea if "autism(s)" are increasing or not and we have a great deal of evidence that diagnostic practices are uneven, at best. You can read some of the stories at: http://www.cnn.com/2012/03/29/health/autism/index.html http://www.nytimes.com/2012/03/30/health/rate-of-autism-diagnoses-has-climbed-study-finds.html Notice this from the New York Times: C.D.C. researchers did not meet any of the children they judged to have an autism spectrum disorder. The team made the decisions based on evaluations of the children, drawn from 14 states. The estimated rates in those states varied widely, from one in 210 children in Alabama to one in 47 in Utah. Now, either Utah has something dangerous in their water and Alabama is the safest state in the nation, or there is something else at play. What else? It ...

What if you aren't autistic anymore? The question was asked by a friend who had read the latest stories on the DSM-V and the criteria changes for autism spectrum disorders.  See this New York Times article: http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html I've written a great deal about defining autism so you might assume I care a great deal, personally. But, as I have written several times, "autistic" to me is a description of some traits  but not the entire me. My doctoral thesis included a long section on definitions of autism and the challenges of labels. My Ph.D does include the word "rhetoric" and a part of me does ponder the nature of labels. But, caring intellectually is not the same as passionately identifying with a label. Autism is a definitional issue.  1980: DSM-III adds "autism" 1989: First criteria for Asperger's published 1991: IDEA adds autism categ...

The following is an abstract. The full article is available only for paid subscribers, sadly. Note: The "autism rate" refers only to what we define as autism during evaluations. The "rate" is subjective, due to the nature of autism screening. Still, that's autism research for you. Epidemiology of Autism Spectrum Disorders in Adults  in the Community in England Arch Gen Psychiatry. 2011;68(5):459-465. doi:10.1001/archgenpsychiatry.2011.38 Traolach S. Brugha, MD(NUI), FRCPsych; Sally McManus, MSc; John Bankart, MSc, PhD; Fiona Scott, PhD, CPsychol; Susan Purdon, MSc, PhD; Jane Smith, BSc;Paul Bebbington, PhD, FRCPsych; Rachel Jenkins, MD, FRCPsych; Howard Meltzer, PhD Context   To our knowledge, there is no published information on the epidemiology of autism spectrum disorders (ASDs) in adults. If the prevalence of autism is increasing, rates in older adults would be expected to be lower than rates among yo...

No autism epidemic, Norwegian study suggests Researchers involved in the "Barn i Bergen" project got widely varying results when they used different methods to investigate the same group of children. The first sub-study concluded that 0.44 per cent of the children had ASD, whereas the result a few years later was 0.87 per cent. "The clinical test revealed several additional cases of the disorder. This suggests that a diagnosis of ASD cannot be ruled out merely on the basis of interviews with the parents," Ms Posserud explains. According to Ms Posserud, it is the children with normal intelligence who most often go unnoticed. These children were not included in the definition of autism a few decades ago when the diagnosis was only applied in the most serious cases. Today ASD covers difficulties with social interaction across a range of intellectual abilities. Since the definition has been expanded, many more people have been diagnosed with autism. Diagnostic criteria...

On one of the many popular autism blogs, the old myth of "no autistic adults" once again made its appearance. The argument is autism is "new" and an "epidemic" — the proof is that there are so few adults with autism receiving services. Adults don't receive many services. The laws and supports are changing, though. For now, the best census of adults with ASDs was done in the U.K. by the National Health Service. The autistic adults do exist, they just were not counted in the past. Again, from 2009: On Sept. 22, England’s National Health Service (NHS) released the first study of autism in the general adult population. The findings confirm the intuitive assumption: that ASD is just as common in adults as it is in children. Researchers at the University of Leicester, working with the NHS Information Center found that roughly 1 in 100 adults are on the spectrum — the same rate found for children in England, Japan, Canada and, for that matter, New Jerse...

This is a comment on: http://freakonomics.blogs.nytimes.com/2010/07/16/autism-a-disease-of-the-rich/ Within all ethnic groups, wealthier parents were more likely to have autistic children, and the pattern held for undiagnosed autistic children as well. The original paper commented on is at: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0011551 The title says it all: "Socioeconomic Inequality in the Prevalence of Autism Spectrum Disorder: Evidence from a U.S. Cross-Sectional Study" I have no idea if this represents the ability of parents to obtain screening, the general age of wealthier parents, or some other factor(s). Also, as this is from PLoS, not a traditional peer-reviewed journal, I'm sure there will be some discussion of the research methods. However, we are seeing that PLoS submissions are improving dramatically -- many researchers are simply avoiding the expensive, proprietary journal process.

From the San Jose Mercury News: http://www.mercurynews.com/breakingnews/ci_12312452 Autism in California increases twelvefold By Sandy Kleffman Updated: 05/06/2009 08:12:02 PM PDT California saw a twelvefold increase during the past two decades in the number of autistic people who are receiving services through regional centers, a new state study reveals. Notice this is the number of people receiving services. This may or may not reflect an increase in autism diagnoses, a decrease in social stigma, or other factors. Also, in a slower economy, more people seek public assistance. From 1987 to 2007, the number of children and adults with autism served by regional centers rose from 2,701 to 34,656, notes a study released this week by the state Department of Developmental Services. This is a huge increase, but I would like to know the percentage increase. I realize that California did not double in population, so no matter what this is an exponential increase in autism services. St...