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Wednesday, December 19, 2018

Treatment Studies Underrepresent Autistic Kids with Severe Impairments

In The Politics of Autism, I write:
Autism is political. It involves all kinds of government policy – from provision of education and social services, to regulation of insurance companies and medical professionals, to public funding of scientific research into its causes and treatment. The connections between government and autism reach farther than most people know. For example, many police officers and other first responders get training in how to deal with autistic people, who might react in unexpected ways during emergencies and crime investigations. Many organizations lobby policymakers and try to influence what government does about issues involving autism. Thomas Insel, director of the National Institute of Mental Health (NIMH), told journalist Andrew Solomon: “We get more calls from the White House about autism than about everything else combined.”

Autism is “political” in a broader sense. Political conflict involves ideas and arguments for which the information is often murky, incomplete, interpretive, and open to manipulation. Just about everything concerning autism is subject to dispute. What is it? What causes it? How many different kinds of it are there? Who has it? What can we do about it? Is it even the right problem to be thinking about? All of these questions, and many others, are the stuff of bitter political battles. The stakes are high: according to one estimate, the national cost of supporting people with autism adds up to $236 billion per year. Of course, such numbers themselves entail controversy. An alternative perspective is that they do not represent the cost of autism, but rather the cost of discrimination against people who have it, and the failure to help them lead independent lives.
At The Journal of Autism and Developmental Disorders, Amy Stedman and colleagues have an article titled "Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies? An Analysis of the Literature."  The abstract:
Despite significant advances in autism research, experts have noted that children severely affected by autism spectrum disorder (ASD) appear to have been understudied. Rigorous analysis of this observation has been limited, and the representation of severity has not been well-described. We assessed three domains of severity (communication ability, cognitive functioning, and adaptive functioning) in 367 treatment studies of children with ASD published 1991–2013. We found that the proportion of studies that included the severely affected population decreased significantly over time, as well as wide variability in measurement and reporting. Inadequate representation of the full autism spectrum in the literature could lead to an unbalanced picture of ASD and leave behind those with arguably the greatest need.
The article's conclusion:

The autism intervention literature contains marked variability, both currently and historically, in the measurement of severity domains, particularly communication ability, and appears to include a decreasing proportion of individuals who are severely affected by even a liberal definition of severity. Variability in defining and assessing severity in autism was underscored through empirical evidence that despite decades of advancement, the field has yet to reach a consensus on how to measure severity, and indeed if even core autism features, such as communication ability, should be considered necessary to report. Promulgation of a minimum standard set of measurement domains, and perhaps favored measures, by a governing body or journal editors, would likely benefit the field by increasing the comparability of different studies’ results and improving the interpretability of the findings through a more clear and consistent description of the sample. There was a notable decrease in the inclusion of the severely affected population over time, which may reflect changes in diagnostic criteria. This severe end of the autism spectrum, for whom assessment and treatment pose a particular challenge, is arguably the least well-understood. Exclusion of this subset from intervention and other research studies could ultimately lead to an unbalanced understanding of ASD, and possibly leave behind those who arguably have the greatest morbidity and need.