The Diagnostic Odyssey of Autism Spectrum Disorder.

OBJECTIVES: Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by challenges in social communication and interaction and restricted or repetitive behavior, interests, or activities. Although ASD symptoms generally manifest in early childhood, many individuals experience delays accessing an autism diagnosis and related services. In this study, we identify the individual, social, and structural factors that influence parents' experiences of children's ASD diagnosis. METHODS: Parents of 25 children with autism participated in 60- to 90-minute semistructured in-person interviews. Interviews were recorded and transcribed verbatim. Transcripts were analyzed using the method of grounded theory. This inductive method allowed analysts to identify key themes related to participants' experiences of children's ASD diagnosis. RESULTS: The process of ASD diagnosis reflects an odyssey that includes 3 key phases: the prediagnosis phase, in which "Making Sense of Child Difference" is a primary characteristic of participants' experiences; the during-diagnosis phase, when "Navigating Diagnosis" suggests systematic barriers that influence the timing of ASD diagnosis; and the postdiagnosis phase, when participants' experiences of "Connecting to Services" point to the important role that personal efforts play in gaining access to care. CONCLUSIONS: In this study, we highlight individual, social, and structural factors that influence parent experiences before, during, and after their child's autism diagnosis. Our findings indicate the need for more consistent and continuous support for autistic individuals and their families during the diagnostic odyssey, as well as resources that better represent the diversity of experiences and symptoms associated with autism across the life course.

Family Characteristics and Children's Receipt of Autism Services in Low-Resourced Families.

OBJECTIVES: Parents of children with autism spectrum disorder (ASD) face competing demands when caring for their child and fulfilling family commitments. It remains unknown whether family obligations and parental stress might decrease the use of intervention services for young children with ASD. METHODS: The current study is a secondary analysis of baseline date from a published randomized control trial with 147 low-resourced caregiver-child dyads. Demographic information, data on service use, maternal employment, parent's perception of their child's development, and parental stress were collected for primary caregivers of 2- to 5-year-old children with ASD from 5 sites. Multiple logistic regressions of accessing any intervention services or more than 1 services on familial characteristics were performed, controlling for demographic and contextual variables. RESULTS: Twenty-five percent of children were receiving no intervention service; 26% were receiving 1 service; and 49% were receiving 2 or more services. Perceived developmental delay and not having a sibling in the home were associated with higher odds of receiving intervention services. Children were more likely to receive more than 1 service if their parents had at least a college education and low levels of stress. CONCLUSIONS: Factors including perceived developmental level, parental stress, and caring for siblings may play a role in accessing services for children with ASD. Results reveal that competing family needs may be barriers to service use. Mothers of children with ASD with multiple children in the home, low levels of education, and high levels of stress may need additional supports or alternative service delivery models.

Brief Report: What Drives Parental Concerns About Their 18-Month-Olds at Familial Risk for Autism Spectrum Disorder?

Parent-reported developmental concerns can be a first step toward further screening and intervention for children at risk for ASD. However, little is known about the extent to which parental well-being and child behavior contribute to parental concerns, especially in families who already have one child with ASD. This study included 54 parents and their 18-month-old high-risk toddlers to examine the extent to which parents' well-being (i.e., parenting stress and self-efficacy), and children's behavior (i.e., expressive language and social communication) contribute to parents' concerns regarding their toddler's development. Results revealed that parental concerns were predicted by their own well-being as well as their toddler's expressive language, highlighting the importance of addressing the needs of both parent and child in intervention settings.

Brief Report: Using a Point-of-View Camera to Measure Eye Gaze in Young Children with Autism Spectrum Disorder During Naturalistic Social Interactions: A Pilot Study.

Children with autism spectrum disorder (ASD) show reduced gaze to social partners. Eye contact during live interactions is often measured using stationary cameras that capture various views of the child, but determining a child's precise gaze target within another's face is nearly impossible. This study compared eye gaze coding derived from stationary cameras to coding derived from a "point-of-view" (PoV) camera on the social partner. Interobserver agreement for gaze targets was higher using PoV cameras relative to stationary cameras. PoV camera codes, but not stationary cameras codes, revealed a difference between gaze targets of children with ASD and typically developing children. PoV cameras may provide a more sensitive method for measuring eye contact in children with ASD during live interactions.