Latinx caregivers and autism identification: what we know a scoping review.

This is a scoping review driven by the broad research question: What are Latinx caregivers' specific facilitators and challenges, if any, in getting a timely diagnosis/identification for their child with autism? Our search resulted in 128 articles across various disciplines. A total of 43 articles were included in the final article set. Employing an inductive process, the experiences of Latinx caregiver(s) in obtaining a diagnosis/identification were coded and categorized. From that process, three broad themes were identified: (1) Diagnosis/identification barriers and facilitators (2) System changes and (3) Cultural adaptations and intersectionality. These themes represent the myriad of considerations that have been purported in the existing body of literature to frame an understanding of the experiences that Latinx/Hispanic caregivers encounter as they seek to obtain an autism diagnosis/identification for their child.

Undocumented Mexican mothers of children with autism: navigating the health care and educational service systems.

In the field of education and health care, researchers and educators attempt to close the diagnosis/identification and service gaps that persist for low-resourced, underrepresented families with children with autism. One group of families particularly difficult to engage in research and interventions is undocumented immigrant families. We know little about whether these families are obtaining a timely diagnosis or services for their children with autism. This study addresses how undocumented Mexican immigrant mothers of children with autism navigate the special education and health care systems, challenges they face in doing so, and the helpers who assist in navigating the process. Six undocumented Mexican immigrant mothers of children with autism participated in one-on-one interviews. Participants were interviewed in a semi-structured format and transcription, coding, and final analysis were conducted in Spanish using analytic software. Three broad themes emerged during the content analysis process: (1) immigration driving force and experience, (2) autism-specific challenges, and (3) autism-specific helpers. Additionally, a case study of each participant is presented and discussed.

Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices.

LAY ABSTRACT: Researchers who study autism-related interventions do a poor job reporting data related to the race and ethnicity of autistic individuals who participate in their studies, and of those who do report these data, the participants are overwhelmingly White. This is problematic for many reasons, as we know little about how interventions are meeting the needs of culturally and linguistically diverse populations, and we assume that interventions are effective for all when they have been developed and validated primarily with and for White children. This study examined the reporting patterns of autism intervention researchers whose work was included in a large-scale systematic review of the intervention literature published between 1990 and 2017. We found that only 25% of studies (out of 1,013 included in the review) included data related to the race and ethnicity of their participants, with minimal change in reporting patterns across the years. In studies with reported data, White participants had the highest rate of participation, with a large gap between the next highest rates of participation among Hispanic/Latino, Black, and Asian participants. Other race and ethnicity groups had very low representation. This study includes additional analyses which examine how the reporting patterns and the inclusion of racially and ethnically diverse participants varies across study types, interventions, and outcome areas. Reporting this data is merely a starting point to begin to address the many disparities in autism-related healthcare, education, and research practices, and this article includes broader implications and next steps to ensure the field becomes more equitable and inclusive.

Randomized pilot study of a special education advocacy program for Latinx/minority parents of children with autism spectrum disorder.

LAY ABSTRACT: Persistent racial and ethnic disparities in obtaining an autism spectrum disorder diagnosis and services have been documented for Latinx children and other racial/ethnic minorities. This study reports on an educational intervention examining the effectiveness and feasibility of a low-intensity (i.e. three sessions), low-cost, parent advocacy for Latinx and other minority parents of children with autism. Results indicated significantly increased parental knowledge and in the immediate intervention group, but this knowledge did not lead to greater empowerment. While parents from low-income, racial/ethnic minority backgrounds, particularly Latinx parents, can significantly increase their advocacy skills with a low-intensity, low-cost program, they may need more support in changing their self-perceptions of empowerment and advocacy.

Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable.

INTRODUCTION: Children with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial. METHODS: MTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various "modules," which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and open-ended interviews (completed by caregivers and coaches). RESULTS: We enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes. CONCLUSION: Mind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASD. TRIAL REGISTRATION: This study is registered with ClinicalTrials.gov: NCT03711799.

Correction to: Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.

Please note that the middle name of coauthor Francisco Reinosa Segovia was misspelled (as "Rienosa") is this article as originally published.

Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.

Decades of research have established that racial ethnic minority, low-income, and/or non-English speaking children with autism spectrum disorder (ASD) are diagnosed later than white children, and their families experience greater difficulty accessing services in the USA. Delayed access to timely diagnosis and early intervention may impact child outcomes and family quality of life. Despite their cognition of these disparities and their significant impact on the lives of those affected, explanations for the barriers experienced by underserved families are elusive, likely due to the complex interaction between structural and family factors. This study used qualitative methods to gather family and provider perspectives of perceived barriers and facilitators to obtaining an ASD diagnosis and accessing ASD-related services for underserved families. Themes from focus groups and interviews with families from three cultural groups (black, Hispanic/Latino, and Korean) and three primary languages (English, Korean, and Spanish) highlight specific barriers related to family, community, and systemic challenges as well as facilitators to accessing care for these populations. Family experiences are expanded upon with viewpoints from the providers who work with them. Recommendations are made for reducing disparities in the existing ASD service system including increasing professional, family, and community education; increasing culturally responsive care; improving provider-family partnerships; and addressing practical challenges to service access.