Morgan K. Crossman

Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions

Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement.

Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD)

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.

Health Care Transition Services for Youth With Autism Spectrum Disorders: Perspectives of Caregivers

BACKGROUND AND OBJECTIVE: This paper seeks to describe the experience of youth with autism spectrum disorder (ASD) in making the health care transition (HCT) to adult care. METHODS: We surveyed 183 parents and guardians of youth with ASD, assessing the extent to which youth and families experienced and desired HCT services, their satisfaction with services, and obstacles to transition. Descriptive statistics were used to examine HCT measures and Fisher’s exact and t tests assessed whether demographic or health measures were associated with service receipt. Any measures with a P value <.05 were included in a logistic regression model, with service receipt as the dependent variable. RESULTS: The receipt of transition services was low overall, with rates for individual services ranging from 3% to 33% and only 60% of the sample receiving any transition service. Despite these low rates, a majority of respondents reported wanting services (73.3%–91.6%), and satisfaction for received services was high (89%–100%). Regression analyses showed depression to be the only variable significantly associated with service receipt. Youth who were identified by their caregivers as having depression experienced a higher rate of transition service receipt than those not identified as having depression. CONCLUSIONS: Findings suggest that there is a great need to address the provision of HCT services for youth with ASD. Although families who received HCT services were generally satisfied, overall rates of service receipt were quite low, and those who were not provided with services generally desired them.

Youth-based participatory research: lessons learned from a transition research study.

Transitions to postsecondary education for youth with disabilities, special health care needs, or both are often challenging. Adults design most interventions aimed at assisting youth in the transition process. In this article, we report on how youth can enhance transition interventions and research. Youth representing a variety of community-based organizations that serve diverse immigrant populations served as co-researchers in a randomized controlled study called OPT4College, a program that provides postsecondary education transition support for youth with disabilities, special health care needs, or both. This youth-based participatory study used an iterative process that is quite different from the traditional research-study flow. The involvement of empowered youth and communities, in concert with academic and public health partners, increases the probability of creating interventions that ensure successful postsecondary transitions for youth with disabilities, special health care needs, or both.

The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities

BACKGROUND Scant research disentangles the relationship between parenting competence, early intervention (EI) services, the family environment and informal support among fathers of children with developmental disabilities. AIMS (1) To determine the trajectory of parental competence for fathers of children with DD from age 3 to age 15. (2) Controlling for child and family characteristics, determine the main effects of the family environment, informal support, and EI services on paternal competence when their child with a developmental disability was age 3. (3) To determine whether there were lasting effects of the family environment, informal support, and the EI service system on differences in paternal competence over time. METHODS This study used multilevel modeling to analyze longitudinal data from 93 American fathers from the Early Intervention Collaborative Study. RESULTS There was no significant change over time in paternal competence after controlling for various covariates. Fathers who initially reported low levels of competence when their child was three reported continuously lower competence over time. Family relationships, positive supports, and perceived helpfulness of home visits were significant predictors of paternal competence at age three. CONCLUSION Implications for programs and policy include developing and adopting rigorous ways to measure and carefully monitor service provision, including assessments of paternal competence, family relationships and informal supports at the start of early intervention, and fostering continuous collaborations between providers, researchers and clinicians to address challenges in data collection.

Sex differences in restricted repetitive behaviors and interests in children with autism spectrum disorder: An Autism Treatment Network study:

Compared to the social communication domain, considerably less is known about the cause, development, and impact of restricted, repetitive behaviors interests and activities in children with autism spectrum disorder, including possible sex differences. This study examined sex differences in clinically identified (Autism Diagnostic Observation Schedule) restricted and repetitive behavior symptoms using the largest known sample (N = 1024) of age-matched and intelligence quotient–matched female and male children with autism spectrum disorder. More similarities than differences were observed; however, younger higher functioning and older lower functioning females presented reduced rates on the Autism Diagnostic Observation Schedule restricted and repetitive behavior subcategory unusually repetitive/excessive, stereotyped behaviors compared to similar males. These findings identify key restricted and repetitive behavior similarities and differences among young females and males with autism spectrum disorder and emphasize the need for a deeper understanding of the female autism phenotype.

Transition tools and access to adult primary care

Purpose The transition from pediatric to adult health care is challenging for youth with autism spectrum disorder (ASD). Many tools have been developed to facilitate transition but studies have not assessed their utility or readiness to be implemented in primary care practices. The purpose of this paper is to rate existing health care transition tools to identify tools ready for use in primary care clinics and develop a set of transition principles. Design/methodology/approach Four pediatric and family medicine providers from community health centers reviewed 12 transition tools and provided ratings and in-depth responses about the usefulness and feasibility of each tool through online surveys and telephone interviews. A conference call was used to discuss the findings and develop a set of transition principles. Findings The top rated tools included three youth self-management tools, two tools focused on ASD information and one tool focused on communication. No one tool was top rated by all providers and none of the tools was ready to be implemented without revisions. The transition principles developed focused on the use of selected tools to involve all youth in regular conversations about transition at every well child visit beginning at age 14 and adapting that process for youth with special needs. Originality/value This study is unique in asking primary care providers to assess the applicability of incorporating existing and publicly available transition tools in their own practices and developing a set of transition principles.