The Simons Foundation Autism Research Initiative
By Jessica Wright
September 26, 2014
When children show early signs of autism, it’s their parents who are best positioned to treat them, according to a study we reported on yesterday. That’s especially true of that study, which tested treatment for children as young as 6 months of age, well shy of the average age of autism diagnosis.
Another feature that distinguishes the study is that the researchers took the time to check that the parents were able to administer the treatment in the way in which it was intended.
This step, called ‘treatment adherence,’ is missing far too often from studies of parent-led therapies, reports a review article published 27 August in Child: Care, Health and Development. Of 33 such studies that are otherwise well-designed, only 14 assessed the parents’ ability to follow the treatment plan. The remaining looked only at whether the children in the treatment group fared better over time than controls.
Of the 14 studies that confirmed treatment adherence, 5 asked only that parents report the number of hours a week that they treated their children. The other nine studies included a measure to test whether parents understood the instructions and were following them as advised.
Two of the nine studies used questionnaires: One tested parents’ knowledge of the treatment and the other was a weekly check of whether the parents were following the treatment plan and felt comfortable doing so.
In the remaining seven, the researchers directly scored how well the parents followed the treatment plan. All but one of these, which involved a home visit, were based on videos taken by the parents or researchers.
Direct observation in a home visit may be the most objective way to assess adherence, but as the researchers note, it’s not always possible with interventions designed to be given throughout a day. For example, the study in yesterday’s article focused on helping children by consistently redirecting their attention, or actions, during daily activities.
Overall, only 4 of the 14 studies reported on the quality of the treatment delivered by the parents. But those that did suggested that the parents are able to do well. Strikingly, only two of the studies looked at whether the parents’ performance had any effect on the children’s outcome.
One of these studies looked at the parents’ enthusiasm, confidence and comfort with the treatment, and the quality of the intervention. The better the parents did, the better the children fared, the study found.
Yesterday’s article also offers reason to be optimistic that parents may be doing just fine. In that study, the parents met with the researchers on a weekly basis to practice and learn new aspects of the therapy. Overall, the parents did well in adopting and applying the new techniques, and became more accomplished and confident over time.