A UK Survey of Families' Opinions of Health Services and Treatment Priorities

Background: There remains a lack of data published in the literature about families' (parents of children with autism and adults on the autism spectrum) experiences of the health system and what areas of medical research they would like scientists to focus on. One priority area for future health services research would be to improve the experiences of families around the time of diagnosis. Additionally, it will be important to gather families' opinions about treatment options that are currently available or may be in the future.

Objectives: To survey parents of children and adults with autism, as well as adults on the autism spectrum, regarding their experiences: 1. at the time of diagnosis; 2. of current treament options.

Methods: UK autism research charity, Autistica, and Newcastle University designed and circulated a survey that was open to UK residents during September and October 2012. The questions could be completed by parents (of either children or adults with autism) or adults on the autism spectrum. The survey was accessed online, it took approximately 15 minutes to complete and was sent out via national and regional contact databases.

Results: At the time of writing this abstract, 1044 respondents (869 parents; 175 adults with autism) had so far completed part or all of the survey. Just under half (46.5%) of parents and two thirds of adults (67%) had seen their family doctor about their child's/their own autism, with mixed experiences. Approximately half (48%) of parents and adults with autism (49%) felt they received enough information at the time of diagnosis. One third of parents (33.2%) and slightly more adults with autism (37%) responded that they had talked to someone on the autism spectrum at the time of diagnosis and found it helpful. 65% of parents and 56% of adults with autism reported concerns about using medication to help with issues such as anxiety or sleep, and mainly commented on previous bad experiences or worries about side effects. 64% of parents reported being ready to access interventions for their child immediately after diagnosis and 22% would want to wait one month or more. In terms of interventions to support adults on the autism spectrum, parents prioritised help with social skills (89%) and adults with autism prioritised help with stress (79%) and greater understanding from the public (79%).

Conclusions: The data from this survey so far indicates a mixed response in terms of families receiving enough and reliable information from healthcare providers at the time of diagnosis. Anxieties about the use of medication and different preferences in terms of when interventions should commence, must be taken into cnsideration when developing treatment plans. Future research should also be mindful of the different preferences parents and adults with autism have in terms of the focus of interventions.