Exploring the Experiences of Families of Latino Children Newly Diagnosed With Autism Spectrum Disorder

Abstract

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.

A systematic review examining caregivers’ of color experiences with the diagnostic process of autism spectrum disorder

“…Transportation costs and limited flexibility in work schedules increased the difficulty of scheduling appointments. Families were also surprised that the evaluation relied heavily on caregiver report of symptoms, which reduced their trust in the evaluation process (Coffield et al, 2021).…”

“…When caregivers endorsed concerns, providers often suggested they wait to see whether their child progresses developmentally before taking further action. For example, one mother described concerns about regression in her child's development, and despite her protests, the pediatrician suggested she wait "because sometimes children can get lazy, they don't want to continue any longer trying to start talking, socializing with people, playing with kids or stuff like that" (Coffield et al, 2021). Although minimization of concerns and delayed referrals often overlapped, the "wait and see" approach warranted its own theme due to its prevalence and negative impact on families' experiences.…”

Assistência às famílias de crianças com Transtornos do Espectro Autista: percepções da equipe multiprofissional

“…Esses desafios e barreiras vivenciados pelas famílias de crianças com TEA estão relacionados à atenção, ao suporte e ao cuidado oferecidos pelos profissionais de saúde (9)(10)12) . E permeiam por diferentes momentos da trajetória da família, como no itinerário para o diagnóstico, na falta de informações na abordagem dos profissionais e dos serviços, na comunicação ineficaz entre equipe de saúde e família, nas dificuldades dos familiares no acesso aos serviços e na falta de apoio após o diagnóstico (9)(10)(11)(12)(13) .…”

Asistencia a familias de niños con Trastornos del Espectro Autista: percepciones del equipo multidisciplinario

“…Los desafíos y barreras que experimentan las familias de los niños con TEA se relacionan con la atención, el apoyo y el cuidado que brindan los profesionales de la salud (9)(10)12) . Y se presentan en distintos momentos de la trayectoria de la familia, como en el itinerario para el diagnóstico, en la falta de información en el abordaje de los profesionales y servicios, en la comunicación ineficaz entre el equipo de salud y la familia, en las dificultades de los familiares para acceder a los servicios y en la falta de apoyo después del diagnóstico (9)(10)(11)(12)(13) .…”