Autism and Latino Families
By Kristina Lopez, PhD, MSW, Assistant Professor, School of Social Work, Arizona State University
Autism has been increasingly diagnosed and treated among children, youth, and adults. Improved understanding of symptom presentation, refinement of diagnostic assessments and criteria, increased public awareness, and a host of other factors has helped to enhance the identification of children with autism. However, differences in prevalence rates, age of diagnosis, access to services and inadequate quality of treatment have disproportionately affected Latino children with autism and their families. The latest Centers for Disease Control report on autism prevalence indicated that although the gap in rates of diagnosis between Black and white children had closed, the difference between Latino children and Black and white children remained, with Latino children having the lowest prevalence rate. These findings illustrate longstanding inequities in autism diagnosis among Latino children.
Beyond going underdiagnosed, for those Latino children who do receive a diagnosis, they may not be likely to receive high quality treatment and culturally appropriate services as these services may not be as available in all communities. Latino parents of children with autism have reported their dissatisfaction with treatment providers and feeling unheard or ignored in their child’s treatment planning. There are multiple reasons across the provider, community, parent, and child levels that contribute to disparities in diagnosis and treatment that affect Latino children. For instance, in some cases there is a cultural mismatch between families and providers. Often within service, provider professions there are fewer people who are Latino, have experience with the Latino culture and/or speak Spanish. Thus, bias within systems has affected diagnoses and treatment opportunities for Latino children and families. Limited knowledge of autism within the Latino community and among parents affects diagnosis and treatment seeking, whereas Latino families may experience stigma within their communities pertaining to disability and misunderstanding of their child’s autism. This may delay diagnosis as families experience shame regarding the child’s behavior or perceive their child’s behavior as typical development. Latino parents may also heed the ill-informed advice of providers who suggest a “wait and see approach” about their child’s language delays if the family speaks Spanish in the household. Financial burden further affects access to diagnosis and treatment as Latino children are less likely to have health insurance coverage and the cost for private autism treatment can be financially out of reach for many families.
Despite the multitude of factors that delay diagnosis and restrict services for Latino children, providers, communities, and parents can collaborate on multilevel solutions. For example, providers can opt into learning more about the paradigm shift from cultural competence to cultural humility, or the understanding of being open to different cultures and reflecting on their own biases about them. Service organizations can engage the community by hiring Latino employees or training people familiar with the culture to create a more inclusive and representative organization for Latino families. Organizations can also strive to be more deliberate in their application and advocacy for inclusive policies that support Latino children and youth with ASD and their families. For example, in California the recent passing of SB 1092 (Hurtado): Equitable Access to Services, ensures that “people served by regional centers can meaningfully participate in decisions about the services they receive, and in hearings about those services – regardless of their race, ethnicity, English proficiency, or ability to afford legal counsel”. Policies such as SB 1092 are essential to call out structural bias and encourage equitable participation of Latino individuals in service decision-making. Providers can also increase the availability of culturally informed autism intervention methods. Researchers have been increasingly developing and testing culturally informed interventions for Latino children, youth, and their families. One such intervention is, Parents Taking Action (PTA; Magaña, Lopez, & Machalicek, 2017) which my colleagues and I developed. PTA is a culturally informed psychoeducation program, delivered by promotoras de salud (community health workers). In PTA, the promotoras are Latina mothers of children with autism in the communities where they deliver information. PTA stresses that inclusive practice means culturally informed outreach to Latino families and intervention. The PTA program is available in Spanish and English, comprised of many elements of the Latino culture, and delivered in the homes of families. The cultural inclusion and flexibility of PTA supports Latino families to more fully understand their children’s autism, support their service needs, and build skills in social communication.
At the community level, increasing autism knowledge and resources via social media outlets, as well as through on the ground methods such as handing out information at school and community events can reduce stigma and increase understanding of autism. Spanish and English information about autism should be made available at these events to enhance inclusivity. By increasing acceptance and understanding of autism, more Latino families may begin to seek diagnostic services and supports. Thus, it is critical that providers who serve Latino children and families in everyday settings are also familiar with autism. This may include general pediatricians, teachers, paraprofessionals, social workers, head start professionals, childcare workers, etc. Enhancing their knowledge of autism symptoms, referral process for diagnostic services, and resources for intervention support has potential to improve early diagnosis and treatment receipt among Latino children.
The final takeaway is that together providers, communities, and parents can collaborate to reduce the disparities in diagnosis and treatment among Latino children with autism. By working together, creatively, flexibly, and inclusively with the Latino/a, Latinx or Latine culture, and autism at the forefront we can improve support and services for these children with autism and their families.
About Kristina Lopez, PhD, MSW
Dr. Kristina Lopez is an Assistant Professor in the School of Social Work at Arizona State University. She earned her PhD in Social Work and Developmental Psychology, Masters in Science in Psychology, and Masters of Social Work in Interpersonal Practice with Children, Youth, and Families from the University of Michigan. She received her Masters and Bachelors of Arts in Psychology from California State University Northridge.
In her research, Kristina Lopez explores disparities in early diagnosis and subsequent intervention services among underserved children and families including low-income, limited-education and racial/ethnic minorities with a specialization in Latinx children with autism. She focuses on the impact of developmental disabilities and complex health needs among children on family systems across racial and ethnic groups and socioeconomic levels. Her research is grounded in a multidisciplinary framework in which she incorporates developmental psychology, social work and public health disciplines to investigate disparities, ecological and socio-cultural perspectives of family support, developmental disabilities and early intervention. Dr. Lopez integrates her personal identity as a Latina living with a developmental disability, practice experience working with Latinx children with autism and their families, as well her research skills to develop and implement culturally informed interventions that affect change for Latinx children with autism, their families, and the communities in which they thrive.