Short report: Integrated evaluations for autism spectrum disorder in pediatric primary care clinics.

LAY ABSTRACT: Primary care providers often screen for autism during well child visits in the first few years of life and refer children for diagnostic evaluations when needed. However, most children do not receive a diagnosis until years later which delays access to services. Racism, socioeconomic status, and other systemic inequalities that limit access to health care further delay diagnostic evaluations. Mental health clinicians who work in primary care clinics can help address barriers to accessing diagnostic evaluation services once they are recommended by their primary care provider. However, mental health clinicians who work in primary care typically do not have training in diagnosing autism. The goal of this study was to evaluate a program training mental health professionals working in an urban primary care setting, primarily serving Black and Latinx families insured by Medicaid, to provide autism diagnostic evaluations. Two hundred and fifty children completed evaluations through the Autism in Primary Care (APC) program. The wait time to access an evaluation through APC was significantly shorter than through standard avenues of care (e.g. referring to a separate autism clinic). Referring primary care providers and caregivers endorsed high levels of satisfaction with the program. Conducting autism evaluations in primary care settings offers a promising opportunity to improve earlier diagnosis and treatment access for families, reduce inequities in care, and increase caregiver and child well-being.

A Multisystem Approach to Improving Autism Care.

Children with autism face significant barriers to accessing evaluations and intervention services often because of confusing referral processes, lack of centralized coordination across organizations serving children with autism, insurance coverage gaps, multiyear waitlists for diagnostic services, and limited provider knowledge about autism. Racism and systemic inequities exist and persist in autism care across the United States. This article reviews targeted initiatives implemented by a multidisciplinary team to advocate for, and address barriers faced, by autistic children and their families in Washington, DC. We describe initiatives across multiple levels of the health care system including: 1. infrastructure-building initiatives (eg, coalition-building, policy, and advocacy); 2. enabling services (eg, population- and community-level supports that increase provider capacity to serve children's and families' needs); and 3. direct services (eg, innovative, gap-filling programs that directly serve children and families). We review outcomes and describe lessons learned.

Identifying Needs of Ethiopian and Eritrean American Parents of Autistic Children.

Collectively, Ethiopians and Eritreans represent one of the largest African immigrant groups in the US, yet no research to date exists on families from these communities raising autistic children. The purpose of our study was to examine the experiences of Ethiopian and Eritrean families of autistic children including experiences (1) receiving the autism diagnosis and interacting with healthcare providers, (2) obtaining services and supports for children (including satisfaction with services and barriers to care), and (3) accessing services and supports for caregivers and families (including needs and barriers to care). Ethiopian and Eritrean parents (N = 51) raising autistic children in the US completed an online survey. Parents reported limited prior knowledge of autism within their communities and had varied experiences with healthcare providers through the diagnostic process. They endorsed barriers to accessing care for their child and family supports (such as provider shortages and cost of services), service needs, and dissatisfaction with school-based and behavioral supports. Many parents reported a negative impact on workforce participation in order to meet their child's needs. Parents identified needs that would benefit their autistic children and families, such as accessible support groups to obtain relevant information. To our knowledge, this is the first systematic study exploring the experiences of Ethiopian and Eritrean families raising autistic children in the US. We discuss implications of our findings and recommendations for culturally responsive care.

Mental Health Screening in Pediatric Primary Care: Factors Associated With Screening Completion and Elevated Scores.

This study aimed to examine predictors of complete and elevated youth mental health screens. Parents of 4- to 11-year-old children completed the Strengths and Difficulties Questionnaire (SDQ) during a routine, universal mental health screening initiative in primary care. Bivariate logistic regressions were run to examine associations between independent (visit age, sex, race/ethnicity, language, insurance, and guardian) and dependent variables (screening completion and elevated SDQ score). Parents of younger and Spanish-speaking (vs English-speaking) children were less likely to have a complete SDQ screen. Among those with complete SDQ screens, older children, male children, those with public or no insurance, and those who had a mother (vs father) complete the screener were more likely to have an elevated score. Understanding patterns of screening completion rates and predictors of elevated screens provides valuable information to improve resource mapping and planning. Findings can inform mental health screening implementation and optimization within primary care.

Still Left Behind: Fewer Black School-Aged Youth Receive ASD Diagnoses Compared to White Youth.

Prior research suggests that Black children are at risk for delays in diagnosis of autism, but factors that influence diagnostic timing across races remain unclear. This study analyzed data from Black and White children who received a first-time autism diagnosis at a specialty clinic. Black youth were under-represented in the group who received a first diagnosis in middle/late childhood (i.e., after age six). Receiving a diagnosis later in childhood was related to higher IQ (trend level) and more internalizing problems for White children whereas it was related to lower IQ (trend level) and higher ASD symptom intensity for Black children. Findings suggest racial disparities in early identification of autism may be diminishing but persist among those diagnosed later in childhood..

Meeting the needs of autistic adults in Qatar: Stakeholder perspectives on gaps in services and priorities for future programming.

LAY ABSTRACT: Qatar is expanding the services that it offers for autistic people, but these services focus mainly on diagnosing and treating young children. Because there are not enough autism providers in Qatar and few opportunities for autistic youth to participate in the community, more and more autistic teens and young adults have unmet needs during their transition to adulthood. The goal of this study was to conduct a needs assessment of transition-age autistic youth in Qatar and their families in order to inform the development of an adult respite care and support center. Respite care is a service that provides families with stress relief and time to participate in activities that are more difficult to do when their loved one with a disability is with them. The objective of this study was to use family and stakeholder input to identify the needs and preferences for respite care for autistic youth in Qatar. The project was conducted with a local research team in Qatar and a team of clinical researchers in the United States specializing in autism. Stakeholders, including parents of autistic people and providers working with individuals with autism, completed surveys and participated in focus groups. Families and providers in Qatar were very interested increasing services for young adults with autism to improve quality of life, although wanted to make sure the service providers would be reliable and trustworthy. Implications from this study may substantially improve the lives of autistic adults in Qatar.

Visual Traces of Language Acquisition in Toddlers with Autism Spectrum Disorder During the Second Year of Life.

Infants show shifting patterns of visual engagement to faces over the first years of life. To explore the adaptive implications of this engagement, we collected eye-tracking measures on cross-sectional samples of 10-25-month-old typically developing toddlers (TD;N = 28) and those with autism spectrum disorder (ASD;N = 54). Concurrent language assessments were conducted and relationships between visual engagement and expressive and receptive language were analyzed between groups, and within ASD subgroups. TD and ASD toddlers exhibited greater mouth- than eye-looking, with TD exhibiting higher levels of mouth-looking than ASD. Mouth-looking was positively associated with expressive language in TD toddlers, and in ASD toddlers who had acquired first words. Mouth-looking was unrelated to expressive language in ASD toddlers who had not yet acquired first words.

Cultural Experiences of Arab American Caregivers Raising Children with Autism Spectrum Disorder.

Research on families' experiences raising children with Autism Spectrum Disorder (ASD) is limited in minority ethnic and cultural groups, such as the Arab American community. Twenty Arab American caregivers raising children with ASD completed online questionnaires regarding their experiences with stigma and acculturation. Nine participants completed follow-up phone interviews. Perceived stigma fell in the low to moderate range. Acculturation related to social interactions indicated slightly greater assimilation compared to separation, and slightly greater integration over marginalization. During interviews, participants discussed the impact of disability stigma, distancing from their communities, and parent gender roles. By better understanding Arab American families raising children with ASD professionals can work towards improving clinical services for these families.

Feasibility of a trauma-informed parent-teacher cooperative training program for Syrian refugee children with autism.

Although the number of Syrians affected by the civil war rises, little work has been done to address the needs of Syrian refugee children with autism spectrum disorder. This research aimed to test the feasibility and acceptability of a culturally sensitive intervention developed specifically for children with autism spectrum disorder affected by trauma. Local partners advised the program team on cultural norms. Nine parents and 11 teachers were recruited to participate in 12-week parent-teacher cooperatives in a large Turkish city. We used qualitative methods to analyze interviews with each participant after intervention completion. A total of 14 participants completed the program (70%). All interviewees were women and Syrian refugees. Local political events, transportation costs and safety, and illnesses impacted attrition and attendance. All participants were satisfied with program content, including gains in autism knowledge, behavior management skills, and social support. Program-related challenges included applying skills to nonverbal children. The majority of participants made recommendations for program improvement, including a need for services outside urban areas. Flexible program delivery methods, including online options, might better accommodate participants unable to travel due to distance, political unrest, or safety. More research is needed to rigorously test program outcomes and to evaluate efforts to train local program leaders.