Autism does not discriminate. The complex, lifelong developmental disability affects people of all races and socioeconomic backgrounds, yet the support and resources available to children varies across cultures.
About 1 in 54 children has been identified with autism spectrum disorder (ASD) according to the CDC, and research shows that it’s critical to diagnose children as early as possible to enhance children’s social communication and reduce challenging behaviors. But when it comes to Latino children in the United States, Assistant Professor Kristina Lopez in Arizona State University's School of Social Work says they’re often overlooked, have a delayed diagnosis and are provided limited access to services.
In her research, Lopez explores disparities in early diagnosis and services among underserved children and families including low-income, limited-education and racial/ethnic minorities, specifically in Latino children with autism.
Her dedication to understand the complex health needs among children and implement improvements in the search for culturally informed providers and resources stems from the experiences of her own developmental disability. For World Autism Month, ASU News spoke with Lopez about the areas of opportunity for social workers to address disparities in autism diagnosis and treatment.
Question: What can you share about your background and why your line of research is particularly personal?
Answer: I am a fifth-generation Mexican-American and a first-generation college student. Education was a top priority for me as I saw it as a pathway to securing a career in which I could impact systems of care that my family and I encountered through the management of my own developmental disability, epilepsy.
We experienced multiple instances of bias that included a pushout experience from my school once I was diagnosed and multiple doctors assuming my parents did not understand the medical system enough to navigate it to support my care. In my professional experience working in special education and early intervention, I witnessed many instances where racial/ethnic minority children and their families were discriminated against by the very systems set up to support them in their care. It was frustrating to observe the bias and discrimination without being able to make a difference in my positions at the time.
Thus, I set out to develop a career where I could effect change at the individual, provider, community, organizational and policy levels. My research is important, as it allows me to do exactly this type of work. At the individual level, the intervention work directly impacts families by helping enhance their knowledge of their children’s autism, their advocacy skills to find and receive more services, and the efficacy and use of evidence-based strategies.
Q: What makes social workers unique in the effort to identify and support children with autism?
A: Social workers are uniquely positioned in the effort to identify and support children with autism, particularly those who are from underserved communities, because social workers often serve children from low-income or ethnic minority groups who may be overlooked in many systems of care. Social workers are more likely to be trained to be aware of differences in race, ethnicity, culture, income, gender and ability as well as biases that exist within systems of care that produce disparities in access to diagnosis and treatment services. However, few social workers have training on autism. If more social work programs included training in autism, social workers would be even more prepared to support the identification of children with autism and provide families with information and community resources to support access to autism services.
Q: Why was it important for you to look at the effect of developmental disabilities across different groups?
A: It was important for me to explore the impact of developmental disabilities, such as autism, among children and families across racial groups and socioeconomic levels because there are significant and persistent delays in prevalence rates of autism and access to quality care among children and families across racial/ethnic groups and socioeconomic levels. Research has made it clear that it is critical to diagnose children as early as possible, which can actually be reliably done by 12 months, and follow-up with early intervention to enhance children’s social communication and reduce their challenging behaviors. However, children from diverse racial/ethnic groups and low socioeconomic levels often have a delayed diagnosis, limited access to services and/or poor-quality services.
For instance, I focus primarily on Latinx children with autism and their families. Despite increased identification of autism among Latinx children over the past decade, they remain less likely to be identified with autism compared to Black and non-Latinx white children. If they are identified, they receive a later diagnosis and reduced quality of care, leaving them susceptible to poorer outcomes. Therefore, it is important to better understand the needs of Latinx children with autism and their families in order to enhance culturally informed outreach methods to improve early screening, diagnosis and intervention.
Q: What are the barriers in how children of different races, ethnicities and income levels diagnosed with autism are treated?
A: The barriers exist at the individual, provider, organizational, community and policy levels.
For instance, at the individual level, parents who do not speak English are more likely to struggle with accessing diagnostic services.
At the provider level, there are implicit biases that may interfere in the referral and diagnostic process, such as when a provider assumes a young child who is from a Spanish-speaking household has delayed speech because they are being exposed to Spanish rather than English only. This provider may then opt to tell a parent the child is “confused,” instead of referring the child for a needed autism evaluation. The child may then not be referred until they are older, losing critical early intervention time.
At the community level, a couple of barriers include community perceptions of health services and mistrust in service providers.
Lastly, at the policy level, barriers are embedded across state and federal health, mental health and education policies that determine autism screening timelines and requirements, access to and cost of diagnosis and treatments, and level of care and support for children and families.
Q: What are some of the successful techniques that you’ve used to help the Latino community understand an autism diagnosis and the services available to them?
A: My colleagues and I have developed an education program for Latinx families of children with autism, Parents Taking Action (PTA) or Padres en Acción. In PTA a promotora de salud (community health worker) model is used, whereby Latina mothers of autistic children are trained to deliver information about autism, advocacy, evidence-based techniques to enhance children’s social communication and self-care strategies to improve their children’s social communication to other Latina mothers of young children with autism. The materials used in PTA include dichos, or common Spanish sayings; audio-recorded novelas, or short stories, narrated by actors; and video demonstrations, including Latina mothers and children, of the evidence-based techniques, as well as bilingual social communication visual support tools.
Q: What other cultural challenges exist, and how can those be overcome?
A: Other cultural challenges include the implicit biases providers may have against racial/ethnic minority groups. To address these challenges, it is important to train all service providers in the practices of cultural humility and antiracism. Cultural humility and antiracism necessitates learning about other cultures through active listening of their experiences, identifying one’s own biases, and critical self-reflection to better understand and address them. We challenge all social workers to be strategic in incorporating culturally relevant frameworks into their research and practice. In doing so, providers such as social workers can be prepared to address the multitude of cultural challenges that must be overcome to support racial/ethnic minority children directly as well as strategize to dismantle the forces that limit racial/ethnic minority children’s access to autism diagnosis and treatment services.
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