Transition from pediatric to adult health care systems presents unique challenges for adolescents with autism spectrum disorder who often have complex medical and mental health needs. Without a coordinated transition plan, pediatric providers often continue to provide care to young adults with autism spectrum disorder beyond the scope of their medical training. Adult providers may be unwilling and untrained to accept care for young adults with autism spectrum disorder. This quality improvement study identified baseline transition-related practices within a pediatric medical home practice and developed a model to promote transition to adult heath care for patients with autism spectrum disorder. Participants were 251 patients with autism spectrum disorder aged 12–21 years. Baseline data revealed limited and inconsistent communication directed to patients and families regarding transition. An evidence-based and replicable transition checklist, templated documentation, and resources geared to patients aged 12–21 years were developed. While improvement was noted in number of visits addressing transition, medical providers skipped or deferred transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to defer to social work to address transition, and difficulty identifying adult providers with whom to collaborate regarding care needs. Lay abstract As adolescents become adults, they typically change from seeing a pediatric health care provider to seeing a health care provider who specializes in working with adults. Adolescents with autism spectrum disorder may have more difficulty finding an adult health care provider who is trained to address the varied needs and medical and mental health issues that often are seen with autism spectrum disorder. Without careful planning for transition to adult health care, patients may continue to be seen by pediatric providers who may not be familiar with adult health needs. This quality improvement project focused on improving transition to adult health care by creating varied supports for the patient, family, and the health care team and putting them into action within a pediatric medical practice that serves over 250 adolescent and young adult patients with autism spectrum disorder. Before the supports were put into place, patients and families received limited and inconsistent communication to help them with transition. While the supports helped increase the amount and quality of help patients and families received, medical providers skipped or put off transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to have social workers discuss transition, and difficulty identifying adult health care providers for patients. This suggests more work is needed to both train and partner with patients, families, and health staff to promote smooth and positive health transitions.

Early diagnosis of autism typically is associated with earlier access to intervention and improved outcomes. Daycares and preschools largely have been ignored as possible venues for early identification. This may be especially important for minority children in the United States who are typically diagnosed with autism later than White children, limiting their access to early specialized interventions and possibly resulting in poorer outcomes. Early childcare providers within underserved communities completed autism screening tools for a sample of low-risk young children (n = 967) in their programs. Early childcare providers returned screening tools for 90% of the children for whom parental consent had been received. A total of 14% of children screened positive for autism spectrum disorder and 3% of the sample met criteria for autism spectrum disorder. Among those who screened positive, 34% were lost to follow-up. Findings suggest that early childcare providers can effectively screen young children for autism spectrum disorder in preschool/daycare settings, thus improving access to early diagnosis and reducing potential healthcare disparities among underserved populations.

Early identification of young children at developmental risk is important for linkage to needed services. Yet, despite guidelines for developmental screening, many pediatricians do not systematically use screening tools. Because many young children spend time in childcare settings, conducting screening in these settings may improve rates of early identification. Surveys were sent to 356 childcare providers who attended brief developmental screening training to determine practices and perceptions related to implementation of screening in the childcare setting. A 51.7% useable response rate was obtained. A majority of respondents strongly agreed that developmental screening should be conducted in childcare centers, that it is important for staff to discuss developmental concerns with parents and to link children with concerns to resources, and that their center director supported use of the screening tool. Several attitudes both about developmental screening and about organizational support had a positive and significant relationship with current use and intended future use of developmental screening tools. Findings suggest that even brief staff training may positively impact screening attitudes and practices, although follow-up technical assistance may result in fuller, more effective implementation.

Children with autism spectrum disorder from low-income, minority families or those with limited English proficiency are diagnosed at a later age, or not at all, compared with their more advantaged peers. The Developmental Check-In is a new tool that could potentially be used to screen for autism that uses pictures to illustrate target behaviors. It was developed to enhance early identification of autism spectrum disorder in low literacy groups. The Developmental Check-In was tested in a sample of 376 children between the ages of 24 and 60 months, from underserved communities. It showed good ability to discriminate autism spectrum disorder from non-autism spectrum disorder (area-under-the-curve = 0.75) across the full age range represented in the sample. Twenty-six of the 28 Developmental Check-In items predicted the presence of autism spectrum disorder. Findings suggest that this pictorial tool may reduce linguistic and health literacy demands when screening for autism among vulnerable populations.

While supportive‐expressive group therapy (SEGT) has been found to be effective in significantly reducing distress associated with life‐threatening illness, the challenge in Australia is to develop a means of providing supportive interventions to rural women who may be isolated both by the experience of illness and by geographical location. In this study an adaptation of SEGT was provided to women with metastatic breast cancer (n =21), who attended face‐to‐face or by telephone conference call. Participants showed significant gains on standardised measures of well‐being, including a reduction in negative affect and an increase in positive affect, over a 12‐month period. A reduction in intrusive and avoidant stress symptoms was also observed over 12 months; however, this difference was not significant. These outcomes suggest that SEGT, delivered in an innovative way within a community setting, may be an effective means of moderating the adverse effects of a diagnosis of metastatic breast cancer while improving access to supportive care for rural women. These results are considered exploratory, as the study did not include a matched control group.

Objective: Understanding families' experiences from their initial developmental concerns through the first several months after autism spectrum disorder (ASD) diagnosis might help explain persistent disparities in age of diagnosis for low-income Latino children and those whose parents speak a primary language other than English. We explored these experiences among Latino parents of children recently diagnosed with ASD to develop a richer understanding of this critical juncture. Method: We conducted semistructured interviews with Latino parents of children diagnosed with ASD in the previous 3 months who were receiving follow-up care through a large, hospitalbased outpatient practice. Interviews were recorded, transcribed verbatim, translated, and analyzed using an iterative process. Results: Twenty parents participated in a semistructured interview approximately 3 months after their child was diagnosed with ASD. All respondents were female and Latina, 90% spoke Spanish, and 95% of children received Medicaid. We identified the following 3 themes from their experiences: (1) When parents first shared their concerns about their child's development with professionals, they felt unheard. (2) Parents were surprised that the diagnostic process for ASD relied on parental description of child development and behavior and observation of the child, not on medical tests. (3) Receiving an ASD diagnosis was a life-altering event for parents, and how that diagnosis was communicated by clinicians had a significant impact on families. Conclusion: Parents of young Latino children identified several barriers throughout the process of ASD identification and diagnosis that have important implications for improving clinician communication with families.

BACKGROUND: Persistent disparities exist in early identification of autism spectrum disorder (ASD) among children from low-income families who are racial and/or ethnic minorities and where English is not the primary language. Parental literacy and level of maternal education may contribute to disparities. The Developmental Check-In (DCI) is a visually based ASD screening tool created to reduce literacy demands and to be easily administered and scored across settings. In a previous study, the DCI showed acceptable discriminative ability between ASD versus non-ASD in a young, underserved sample at high-risk for ASD. In this study, we tested the DCI among an unselected, general sample of young underserved children. METHODS: Six hundred twenty-four children ages 24 to 60 months were recruited through Head Start and Early Head Start. Parents completed the DCI, Modified Checklist for Autism in Toddlers, Revised with Follow-Up, and Social Communication Questionnaire. Children scoring positive on any measure received evaluation for ASD. Those screening negative on both Modified Checklist for Autism in Toddlers, Revised with Follow-Up and Social Communication Questionnaire were considered non-ASD. RESULTS: Parents were primarily Hispanic, reported high school education or less, and had public or no insurance. The DCI demonstrated good discriminative power (area under the curve = 0.80), performing well across all age groups, genders, levels of maternal education, primary language, and included ethnic and racial groups. Item-level analyses indicated that 24 of 26 DCI items discriminated ASD from non-ASD. CONCLUSIONS: The DCI is a promising ASD screening tool for young, underserved children and may be of particular value in screening for ASD for those with low literacy levels or with limited English proficiency.

Developmental screening of young children is important in all populations, especially underserved communities with known health care disparities. The American Academy of Pediatrics created guidelines and a toolkit for pediatricians to conduct developmental surveillance and screening, yet these guidelines are not uniformly implemented within pediatric health care settings. This results in missed opportunities to identify young children with developmental issues, delaying enrollment in early intervention and affecting child outcome. A community-based developmental screening program was designed to address this need and to reduce barriers to developmental screening. Free, bilingual clinics were provided within underserved communities, targeting children between 1 and 5 years old. These brief screenings consisted of an Ages and Stages Questionnaire–Third Edition conducted interactively with the child, parent/guardian, and screener, as well as the Modified Checklist for Autism in Toddlers–Revised (MCHAT-R) when applicable for child's age. In the first 3 years of the program, 1,150 children were screened and 51% were found to be “at risk.” Twenty-seven percent of at-risk children were lost to follow-up at 1 month. Of those at-risk children reached at 1 month follow-up, 88% had arranged recommended evaluations and services. Implications of this model for improving access to care are discussed.