by Judith Ursitti
We know that people with profound autism (the part of the autism population that requires lifetime, 24/7 care) aren't included in much of the clinical research these days. But these exclusions can be subtle. Headlines often don't make the exclusion obvious.
Case in point: Recent research regarding the amount of treatment hours needed for young children with autism spectrum disorder indicates that less is more. 1 Sound great, right? Fewer treatment hours mean more free time and reduced costs.
But details matter. According to a recent letter to the editor2 from Tom Frazier, PhD, (a Professor at John Carroll University and a member of our Medical and Scientific Advisory Board) and his colleagues, "Although the authors conducted comprehensive and thoughtful analyses, the primary study conclusion is heavily influenced by a serious selective sampling problem, which was not properly evaluated."
Variables considered in the original analysis included:
- hours per day
- number of days and
- total hours
- intervention type
- age
What consideration was missing? According to Frazier et al., "they fail to fully consider one of the most important child characteristics, the child's capacity for processing and learning new information in their meta-regression models."
When Frazier adjusted for the inclusion of IQ, the results looked quite different. (See the open science data here.) What does this mean for the profound autism population? The exclusion of considerations around IQ can result in conclusions that don't support the authentic presentations of the 26.7% of the population that the CDC estimates has profound autism.
The truth will set us all free. People with profound autism frequently require more intensive services because of their complex needs. The push for fewer treatment hours and more parent-mediated interventions, even if well intended, often doesn't contemplate the realities of the part of the autism population that requires lifetime, 24/7 care. It is essential that headlines don't result in reductions that are potentially harmful to them.