Blog dedicated primarily to randomly selected news items; comments reflecting personal perceptions

Monday, July 28, 2014

Autism Spectrum Disorder Struggles

"We are setting up a situation where we're scaring people and we're scaring people unnecessarily."
"It could be that these expert clinicians who are reviewing the chart have more insight into what constitutes autism and are making an appropriate decision. But I would need more evidence before I really believed that."
"[But] if it's increased awareness and better resources, then we're not talking about prevalence. [Regardless of which prevalence number is right, that's] a lot of kids either way, and we have a tremendous amount of work to do to improve the care we provide to them and the support we provide to their families."
Dr. David Mandell co-editor Autism journal
Description: Data Chart 1

Tracking the Number of Children Identified with Autism Spectrum Disorders: U.S. Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities

"[There is pressure] to have an autism diagnosis because it offers more support for services for those who have the diagnosis versus (for) those who don't, even though the functional challenges each child might face could be very similar or equally difficult."
Whether one in 68 is a perfect estimate or not, it doesn't really matter to me. The bottom line is we're seeing an increase."
Suzanne Lewis, director, autism research, University of British Columbia; board member, Autism Society Canada
Description: Data Chart 2
Source: Centers for Disease Control and Prevention, Autism and Developmental Disabilities Monitoring Network

"Everything in developmental psychology or what I know about genetic influence is that [such increases] don't happen with such alarming rapidity as we've found in autism. My main thing that comes out in my book is that we have to be very careful in making a diagnosis that is so unreliable."
Dr. June Pimm, psychologist, Carleton University: author, The Autism Story

Photo: Prevalence of ASDs with 8 Year olds
Source: Centers for Disease Control and Prevention, Autism and Developmental Disabilities Monitoring Network

A new set of statistics has been recently published in the United States on the onset and prevalence of autism spectrum disorder; the most widely reported statistic, that one in 68 children presents with autism spectrum disorder creating a controversy. ASD itself covers a wide patient spectrum; those with severe forms accompanied with other disabilities, and milder forms considered "high-functioning" variations. Basically confronting problems in communication leading to difficulties in social and emotional skills.

Since the Centers for Disease Control began publishing its data in 2003; from 1 in 294, to 1in 150 resulting from a multi-site study published in 2007, to 1 in 88 in 2012 and finally in this year of 2014, the questioned 1 ASD onset in 68 children. Autism journal editors Drs. David Mandell and Luc Lecavalier feel the results represent "a mistake" in the use of the CDC's surveillance studies to "provide meaningful estimates" of ASD prevalence since they feel the study results have been disabled by flaws.

Dr. Mandell is a professor at the University of Pennsylvania, and associate director for the Center for Autism Research at The Children's Hospital of Philadelphia, while his colleague Dr. Luc Lecavalier is a Canadian psychologist specializing in autism diagnosis and treatment, working out of Ohio State University. Between them they have a formidable background in autism spectrum disorder detection and treatment, And they feel that the numbers quoted represent estimates.

They feel that the problem with the CDC methodology in the studies is its two-step records review rather than a face-to-face real-time evaluation with a child, an expensive procedure, and time-consuming Firstly, researchers screen children's health and school records to determine the pre-existence of an autism diagnosis or professionals' notes pointing to potential for the disorder; details such lone play, or avoidance of social interaction.

At that point, trained assessors review the records and decide whether they represent a common cause definition. The study reviewed over 47,000 children's records across sites in 11 U.S. states for surveillance purposes, and the subjects were eight-year-olds, since most children by then have been flagged for autism. About 20% of those studied and brought into the CDC statistics had no previous diagnosis or autism classification.

The study reviewer, wrote the two doctors in their criticism, is "overriding" a decision by the child's own practitioner on occasion, determining not to diagnosis them with ASD. Results varied from state to state; in Alabama for example, prevalence was identified at 1 child in 175, whereas in New Jersey the conclusion reached was 1 in 45; variation, it is speculated, possibly due to increased awareness of autism and its presentation, along with variations in health care and services access specific to autism.

As far as the CDC itself is concerned, their study methods are reliable as "providing the most complete picture of autism in communities across the United States", even while acknowledging differences in study approaches, yet pointing out a 2011 study it considers to have validated its methodology. Still, diagnosing autism remains an imperfect science and a complex process lacking objective tests.

In Canada, work has begun in the creation of a national system for tracking autism information. There is little reason not to think that what prevails in the incidence of autism in children in the U.S. relates as well to its North American neighbour. A limited Canadian study that searched diagnosed cases of autism in 2012 found it to be on the rise. Southeastern Ontario was held to have a 1 in 63 autism prevalence rate for 5- to 9-year-olds in 2010, a 108% rise from data acquired in 2003.

"I don't think we're going to see a big difference in Canadian numbers. We're pretty confident that [Canada's surveillance system is] going to show that 1 in 68 is a very relevant number", stated Jill Farber, executive director of Autism Speaks Canada. And Dr. Lewis is "absolutely" becoming accustomed to seeing greater numbers of children show up in her own autism practise.

As for Dr. Pimm of Carleton University, the release of her book, The Autism Story, where she encourages parents to make use of whatever combination of therapeutic aids that are available and their experience tells them works well for their children, rather than allow themselves to be ushered toward a single type of treatment; a combination approach as far as she is concerned, from her experience seems to work best for autistic children rather than one-treatment fixation.

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