Development of a patient-centered conceptual model of the impact of living with autism spectrum disorder.
A nine-domain patient model gives BCBAs a quick checklist for choosing goals that reflect what autistic clients say actually matters.
01Research in Context
What this study did
McDougall et al. (2018) talked with people who live with autism every day. They asked what matters most to them.
The team built a new nine-part picture of life with ASD. The model groups core symptoms, other daily challenges, and big life impacts.
What they found
The interviews gave nine clear domains. These cover communication, sensory issues, friendships, school, work, and feelings about self.
The model is meant to guide which outcomes researchers track in drug or therapy trials. It keeps the patient voice in view.
How this fits with other research
de Schipper et al. (2015) mapped 99 ICF-CY categories seen in past ASD studies. Fiona’s 2018 model trims that list into nine patient-friendly themes. It extends the older review by adding lived-priority language.
Mahdi et al. (2018) also used 110 ICF categories from stakeholder voices the same year. Both papers want broader measures than core symptoms, but Fiona gives a compact trial-ready model while Soheil offers the full WHO frame. They replicate the same goal with different scopes.
Wetterneck et al. (2006) built an earlier autism interview focused only on psychiatric comorbidities. Fiona’s work widens the lens from comorbidity to whole-life impact, superseding the narrower 2006 view.
Why it matters
When you pick goals for a client or design a study outcome, you can map them onto these nine domains. Check that your data sheets touch more than language or repetitive behavior—add friendship quality, sensory comfort, or family stress if the client values them. Share the plain-language model with parents to co-select targets that feel meaningful, not just easy to count.
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02At a glance
03Original abstract
The aim of this study was to generate a patient-centered conceptual model of the impact of living with autism spectrum disorder, which can be used to support the selection of outcome measures for clinical trials. Following an initial literature review to identify preliminary concepts and inform an interview guide, in-depth face-to-face interviews were conducted with adolescents and adults with autism spectrum disorder (IQ ⩾ 70) (n = 10), as well as parents of children, adolescents, and adults with autism spectrum disorder (IQ ⩾ 70) (n = 26). Data were analyzed using established qualitative research methods. The resultant conceptual model contains three interrelated domains reflecting core symptoms of autism spectrum disorder (communication deficits, socialization deficits, and restrictive, repetitive patterns of behavior), three domains reflecting associated symptoms of autism spectrum disorder (physical, cognitive, and emotional/behavioral), and three domains representing the impacts of living with autism spectrum disorder (impacts on activities of daily living, school/work, and social life). Interview respondents also cited social communication deficits as priority targets for new treatments. The conceptual model provides a patient-centered perspective of relevant concepts of autism spectrum disorder from the perspectives of people with autism spectrum disorder and their parents and offers a valuable tool for identifying valid patient-centered outcome measures for future clinical trials.
Autism : the international journal of research and practice, 2018 · doi:10.1177/1362361317718987