Sunday, September 27, 2020
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Do more kids have autism or just a diagnosis?

A new study published recently in the British Medical Journal about the epidemic of autism cases we’re experiencing shines an interesting light on the real prevalence of the disorder.

Diagnoses for autism increased more rapidly than other disabilities from 1992–2003. (Medical X

The annual prevalence of the autism symptom phenotype was stable during the 10-year period between 1993 and 2002, researchers found, based on children in Sweden. In contrast, there was a significant increase in prevalence of registered diagnoses of autism spectrum disorder in the national patient register.

Therefore, the prevalence of the autism symptom phenotype has remained stable in children in Sweden while the official prevalence for registered clinical diagnoses of ASD has increased substantially. This suggests that administrative changes, which affect the registered prevalence, rather than secular factors that affect the actual development of ASD, are important for the increase in the reported number of diagnoses.

The Centers for Disease Control and Prevention states that the number of autism diagnoses in the US has also increased, from about 6.7 cases per 1,000 children who were 8 years old in 2000 to about 14.7 in 2010. Autism is diagnosed in about 1 out of every 68 kids in the US.

And studies showing the prevalence of autism diagnoses among other age groups and in different places around the world generally confirm the CDC’s summary of US data.

Doctors first started using the word autism in the late 1940s to describe a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts. The number of children diagnosed with autism soared in the 1990s.

A decrease in the number of autism diagnoses was erroneously reported in 2006, but it never happened, despite what was reported in news media. News reports about autism tend to pick data that serves the purpose of the articles best, rather than the purpose of autism researchers who might produce more effective autism treatments or reduce the level of suffering or risk taken on by children with an ASD.

For example, ABC News reported last year that 91 percent of autistic kids who died in recent years died from drowning. ABC noted that the data were based on news reports that were likely to be neither vetted nor comprehensive. Unfortunately, this makes widely read articles less credible and serves only to reduce our awareness of the significance of the problem.

One hugely significant problem is that kids with autism tend to wander off and occasionally see a pond or pool that draws them in. Even though they can’t swim, they’re tempted by the water and end up drowning.

“Fifty percent of our population is prone to wandering,” CBS News quoted Lindsay Naeder, director of the Autism Response Team at Autism Speaks, as saying. “And it’s not scientific, but my point of view is that the other 50 percent just haven’t wandered yet. More than 50 individuals in the autism community in the US have died since 2011 while wandering away from caregivers. Of those deaths, 90 percent were drownings.”

Of course, more than 50 kids with autism have died in the US since 2011, but when media reports restrict themselves to using other media reports, rather than official records, which are often more difficult to obtain, we are left wondering why more complete data aren’t available about this problem. The number given, 90 percent, loses all meaning in this context.

That doesn’t mean people aren’t trying to research and understand ASD, though. Some middle school students from Chicago’s northern suburbs of Skokie and Northbrook provided the music for a recent Autism Speaks walk at Soldier Field in Chicago, the Chicago Tribune reported. The band had high energy, according to reports, and was a welcome participant in the third annual walk to raise money for ASD-related causes.

More research is needed. First, without an increase in the prevalence of any autism symptom phenotype in the population, compared to what it was in the past, the change in autism definitions may be playing too strong a role in our diagnosis and treatment of autism. Were diagnoses missed in the past, or do we give too many kids today an ASD diagnosis without finding an autism symptom phenotype? If the latter is close to what’s happening, we’re taking away special ed resources from kids who need the resources.

And second, how big a problem is wandering, also known as “elopement,” among autistic kids? How many of them wander into disaster? And what can we do to prevent either the wandering or the ensuing disaster? For example, the CBS News article referenced above has info on wearable devices from Project Lifesaver for children with autism at high risk of wandering.

Paul Katula is the executive editor of the Voxitatis Research Foundation, which publishes this blog. For more information, see the About page.

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