Abstract
Date Presented 4/8/2016
Parents of children who are eventually diagnosed with autism spectrum disorder (ASD) have concerns about their child’s development prior to diagnosis, but we are unaware of any differences in the concerns of parents of children eventually diagnosed with ASD versus parents of children that do not receive a diagnosis. We evaluated 1,250 parent concerns in a community-based sample.
Primary Author and Speaker: Anna Wallisch
Additional Authors and Speakers: Scott Tomchek, Lauren Little
Contributing Authors: Lauren Little, Scott Tomchek
RESEARCH QUESTIONS:
What are the most common early concerns among parents of children with and without an eventual diagnosis of autism spectrum disorder (ASD) before a diagnostic evaluation?
To what extent are early concerns related to age and gender in children with and without ASD?
BACKGROUND: A number of studies have suggested that parental concerns precede a diagnosis of ASD, and such developmental concerns often help identify children in need for further evaluation. There is an important relationship between parents’ initial concerns of developmental milestones and an eventual diagnosis of ASD. Exploring parent concerns about development should be used as an aid to identify children in need of closer monitoring and perhaps an autism-specific screener. Occupational therapists (OTs) who work with at-risk children before a diagnostic evaluation may consider the parent concerns in designing intervention approaches and may be aware of how parent concerns are related to an eventual diagnosis of ASD.
DESIGN: The current study used retrospective chart data of a convenience sample of children diagnosed with ASD at a university-based diagnostic center. Before a diagnostic evaluation and as part of the intake documentation, parents are asked to report three concerns about their child to better inform the diagnostic team. We reviewed the intake forms of 1,250 children to analyze parent concerns of children who did and did not receive an autism diagnosis.
PARTICIPANTS: Participants included children who received an autism diagnosis and those that did not (N = 1,250). The children’s chronological age ranged from 15 to 143 mo, with a mean age of 64.36 mo (standard deviation = 31.64), and 60% were male. Each participant had up to three concerns, allowing us to code a total of 3,026 concerns across the children.
ANALYSIS: Data was analyzed through a qualitative coding system adapted from Ozonoff et al. Concerns were coded as (1) behavior/temperament, (2) cognitive development, (3) medical, (4) motor, (5) speech/communication, (6) social, (7) stereotyped behavior, (8) sensory aversions and preferences, (9) unspecified autism, and (10) specific diagnostic concerns. We used descriptive statistics to investigate the percentage of concerns across children based on age and gender.
RESULTS: Data analysis is ongoing, and results will be ready by the time of presentation. Preliminary results suggest that prior to a diagnostic evaluation, parents of children with an eventual ASD have more concerns about their children’s speech/communication and social development. Parent of older children with ASD had increased concerns related to social behavior. Across both groups (children with and without ASD), parents had concerns about children’s behavior/temperament and cognitive development. Younger children with an eventual diagnosis of ASD had increased concerns related to medical issues.
DISCUSSION: Findings from this study may inform how OTs work with young children at risk for ASD and other diagnoses. When working with young children with developmental concerns, it may be that social communication difficulties are more indicative of children who will go on to have a diagnosis of ASD. Moreover, OTs can collaborate with parents to discern which concerns warrant treatment and further evaluation.
IMPACT STATEMENT: OTs often work with caregivers of children at risk. Research is needed within occupational therapy that will inform how intervention is tailored to meet the specific concerns of families; the first step in this process is to uncover how parent concerns differ and are related to child characteristics in those with and without ASD.
