Factors Affecting Treatment Choices by Caregivers of Children with Autism

Background: Although it is clear that empirically unsupported treatments for autism are utilized, it is unclear how many individuals receive supported versus unsupported interventions. It is also clear that a variety of factors influence caregiver choices about the interventions they use. A deeper understanding of what interventions caregivers use and why they choose the ones they do is important to those who develop, evaluate, and use interventions for autism. Although treatment choices are likely impacted by restrictions on resources and availability, it is unknown the extent to which they impact caregiver choice of treatment. Perceived delay to treatment outcome may be another factor that contravenes the impact of empirical support on caregiver choice of treatment. That is, some empirically supported interventions take significant amounts of time to achieve meaningful progress. The delay from onset of intervention to achieving treatment goals may cause caregivers to perceive such treatments as less valuable.

Objectives: This study endeavored to answer the following questions:

1. What treatments do caregivers of children with autism currently use?
2. What treatments would caregivers use if resources and availability were not restricting their choices?
3. To what extent are choices about treatment influenced by empirical support relative to the immediacy of the outcomes of those treatments?

Methods: Caregivers of children diagnosed with autism served as participants. A literature review identified 206 treatments. Participants completed a questionnaire in which they indicated how knowledgeable they were about each treatment and how effective they perceived each treatment to be. Part 1: Participants were asked which of the 206 treatments they currently use. For each treatment selected, they were given two tokens to distribute among those treatments in proportion to how they allocate the resources (time, money, etc.) they currently expend on treatments. Part2: Replicated Part 1 with the exception that participants were asked which treatments they would use if their choices were unconstrained by resources and availability. They were given 6 tokens per selected treatment to distribute as in Part 1. Part 3: Participants distributed 22 tokens among 11 treatments that varied in inverse proportion along two continua: degree of empirical support and delay to treatment outcome.

Results: Part1: The number of treatments currently used ranged between two and 12 (M= 7.8). Caregivers primarily use treatments they believed were effective and about which they believed they were very knowledgeable. Part 2: When unconstrained by resources or availability all caregivers increased the number of treatments they would use (M = 40.8; range, 21 to 58), and their overall knowledge and perceptions of efficacy for those additional treatments decreased significantly. Part 3: Significantly more participants responded in a manner suggesting that their choice of treatment is influenced by empirical support than by immediacy.

Conclusions: Caregivers choice of treatment appeared to be highly constrained by available resources.  In addition, many individual participants paradoxically reported a tendency to be more influenced by empirical support than immediacy on Part3, but their actual choice of current treatments or unconstrained treatments contradicted that result in Parts 1 & 2.