To investigate the health care experiences of children with autism spectrum disorder, whether they have unmet needs, and if so, what types, and problems they encounter accessing needed care. We address these issues by identifying four core health care services and access problems related to provider and system characteristics. Using data from the 2005-2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) we compared children with autism spectrum disorder with children with special health care needs with other emotional, developmental or behavioral problems (excluding autism spectrum disorder) and with other children with special health care needs. We used weighted logistic regression to examine differences in parent reports of unmet needs for the three different health condition groups. Overall unmet need for each service type among CSHCN ranged from 2.5% for routine preventive care to 15% for mental health services. After controlling for predisposing, enabling and need factors, some differences across health condition groups remained. Families of children with autism spectrum disorder were in fact significantly more at risk for having unmet specialty and therapy care needs. Additionally, families of children with autism spectrum disorder were more likely to report provider lack of skills to treat the child as a barrier in obtaining therapy and mental health services. Disparities in unmet needs for children with autism suggest that organizational features of managed care programs and provider characteristics pose barriers to accessing care.

The findings support the importance of the marital relationship to parental well-being and illustrate the value of including fathers in studies of children with developmental disabilities.

We conducted in-depth case studies of 10 health care professionals who actively provide primary medical care to adults with autism spectrum disorders. The study sought to understand their experiences in providing this care, the training they had received, the training they lack and their suggestions for encouraging more physicians to provide this care. Qualitative data were gathered by phone using a structured interview guide and analyzed using the framework approach. Challenges to providing care were identified at the systems, practice and provider, and education and training levels. Solutions and interventions targeting needed changes at each level were also proposed. The findings have implications for health care reform, medical school and residency training programs, and the development of best practices.

Family resources (i.e. household income and spouse support), parenting challenges (i.e. number of children, difficulty finding reliable child care, and child characteristics), work rewards (i.e. work interest) and work demands (i.e. hours and work overload) were tested as predictors of parenting role stress among mothers and fathers in two-earner families of five-year old children with disabilities. The two-level hierarchical model was adapted to assess mothers and fathers as nested within married couples. Both common and unique predictors of maternal and paternal parenting role stress were found. Having fewer children in the family predicted less stress for both parents. Household income and an interaction between child behaviour problems and work interest were significant predictors of maternal parenting role stress. In contrast, greater difficulty in finding reliable child care predicted higher levels of parenting role stress for fathers but not mothers. The policy and research implications of these findings are discussed.

In this study we investigated the extent to which the family environment predicted differences in trajectories of adaptive development in young children with Down syndrome. The sample was comprised of 54 children with Down syndrome and their families who were studied from infancy through the age of 5 years as part of a longitudinal study of children with disabilities. Hierarchical linear modeling (HLM) was used to estimate the parameters of hierarchical growth models in domains of adaptive development. Results indicated that growth in communication, daily living skills, and socialization domains were predicted by measures of the family environment (i.e., family cohesion and mother-child interaction) above and beyond that predicted by maternal education. Further, Bayley MDI measures during infancy did not predict changes in adaptive development in any of the domains. The results are discussed in terms of implications for service provision and for expanding theoretical frameworks to include the development of children with disabilities.