Treatment choices in autism spectrum disorder: the role of parental illness perceptions.
Parents who view autism as uncontrollable add more medical and nutritional treatments; feeling in control cuts the extras.
01Research in Context
What this study did
The team asked 103 parents of autistic children what they believed about autism. They used a short questionnaire that measures illness perceptions.
Parents then listed every treatment they used: school programs, medicines, vitamins, special diets. The study linked beliefs to choices.
What they found
Parents who saw autism as very serious or out of their control chose more pills and diets. Parents who felt they had personal control chose fewer extras.
Beliefs predicted choices better than child age or symptom scores.
How this fits with other research
Saunders et al. (2005) showed the same pattern earlier: when moms of kids with ID feel little control, stress soars. Dolezal et al. (2010) moves the lens to autism and shows low control drives extra treatments, not just stress.
Roudbarani et al. (2023) flips the view: clinician attitudes shape which kids get therapy. Together the papers say both sides—parent and provider—lean on personal beliefs, not just data.
Roberts et al. (1987) looked at acceptability ratings and found parents liked behavioral plans, not drugs. The new data seem opposite—parents now chase medical fixes—but the gap is about method: ratings versus real-life choices under stress.
Why it matters
You can spot parents likely to stack extras: they say autism is permanent, caused by external factors, and beyond their control. Give them clear data on evidence-based options and build real parent-control skills like PECS coaching. A five-minute beliefs check at intake can save months of chasing unneeded pills or diets.
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02At a glance
03Original abstract
A cross-sectional design was employed. Parents of a child with Autism Spectrum Disorder (ASD) were asked to complete a modified version of the Revised Illness-Perception Questionnaire (IPQ-RA) and answer questions about information-seeking activities and treatments used. Internal consistency, construct validity, and factor structure were assessed. Multivariate logistic regressions were performed. Eighty-nine parents having a child with ASD took part in the study. Five subscales of the IPQ-R were replicated. Causes were split into personal, external and hereditary factors. The most highly rated main cause was a genetic cause. Perception of seriousness of the disease was associated with the use of educative methods and unpredictable course of disorder associated with drug use. A higher sense of personal control was associated with reduced use of nutritional or pharmaceutical treatments. Attendance to training programs was associated with higher hereditary beliefs and lower perception of cyclical timeline. The IPQ-RA captures components of representations of autism and provides a reliable mean for exploring illness concept in parents of a child with ASD. Some illness dimensions may prevent parents from having the opportunity to modify their concept of autism. Such measure may be useful for assessing the modification of potentially malleable beliefs with psychoeducational interventions.
Research in developmental disabilities, 2010 · doi:10.1016/j.ridd.2010.02.007