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Diversity, Equity, and Inclusion in Autism Research

For people with autism spectrum disorder (ASD), receiving an early diagnosis can be life-changing, but some populations face additional challenges in getting an accurate diagnosis at a young age. Researchers pushing for more diversity, equity, and inclusion (DEI) in autism research are working to change that.

Accurately diagnosing autism spectrum disorder (ASD) at a young age opens up access to early interventions and better treatments for children and their families. However, because women and populations of color have been underrepresented in ASD research, people in these groups often face barriers to diagnosis and care. 

As part of our commitment to addressing neurodisparities in brain health, we hosted a webinar with Audrey Brumback, MD, PhD, pediatric neurologist and assistant professor of neurology and pediatrics at the University of Texas at Austin. Dr. Brumback received a 2022 Next Generation Research Grant from the American Brain Foundation to study why Latino children are consistently diagnosed at older ages than their white peers. During the webinar, she discussed how the lack of language-appropriate and culturally relevant diagnostic tools contributes to this disparity and how a new tool for ASD diagnosis may help.

What Is Autism?

Autism is a developmental condition that starts early in life and is marked by behaviors that can impede everyday function and create challenges when interacting with others. Some common symptoms include differences in how people communicate and act socially, engaging in repetitive behaviors, having a narrow and intense focus on specific interests, and sensitivity to light, sound, certain clothing textures, or temperature. People with autism may also have different ways of moving, learning, or paying attention. ASD varies from person to person and can range from mild to disabling.

How Do We Diagnose Autism?

The diagnosis process begins with family members, a primary care doctor, or in adult cases, the individual asking for an autism evaluation. In the case of children, the child and their family are then referred to a pediatric neurologist, psychologist, or behavioral/developmental pediatrician who does an evaluation and makes a diagnosis using guidelines from the DSM-5 (the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders). 

“[Diagnosis] is based on clinical observation, caregiver report, an interview, and a series of symptoms,” Dr. Brumback says. “If you have those symptoms and the clinician doesn’t think they’re due to something else… then you will get a diagnosis of autism.” Before making a diagnosis, clinicians will also explore all the alternative possibilities for these symptoms in children, including global developmental delay (GDD) or intellectual disability (ID).

Why Is an Early Autism Diagnosis Important?

An early ASD diagnosis is crucial for creating a successful treatment plan. It also makes a big difference for family members and others who interact with an individual with autism. 

“If you know a person is autistic, it really reframes how we interpret [their] behavior,” says Dr. Brumback. For example, an ASD diagnosis can help explain why a child experiences extreme anxiety or distress for seemingly minor reasons, has an unusual intonation to their voice, or doesn’t like being in loud public spaces like restaurants.

“By identifying how somebody processes information—what are their likes and dislikes, what are the things they find challenging, what are the things they are naturally good at—we can bring that [knowledge] together to create a plan to help the person thrive,” says Dr. Brumback.

Disparities in Autism Diagnosis Criteria

ASD symptoms are often divided into two main categories: social communication and restricted, repetitive behaviors and interests. Within each category there are a wide range of stereotypical symptoms (the more apparent symptoms closely associated with ASD) and subtle symptoms. 

“In terms of cognitive inflexibility [for example], we stereotypically think of somebody who has rigid routines and intolerance to change,” Dr. Brumback says. “On the more subtle side of things can be somebody who is a true perfectionist and gets really easily frustrated when things aren’t as they need to be. This person can transition from one thing to another, but it might be very anxiety provoking for them.” 

While some medical professionals use standardized assessments, most current options are skewed toward stereotypical symptoms observed in white men and are therefore not as effective when working with other groups of people. Additionally, people who present with more subtle symptoms stand a higher chance of going undiagnosed. Dr. Brumback does not use standardized assessments and believes developing different, more inclusive assessment guidelines will help us begin to address some disparities in diagnosis.

Barriers to Early ASD Diagnosis for Latino Children

Dr. Brumback points to multiple factors that contribute to BIPOC individuals being consistently underdiagnosed with ASD, including language, cultural expectations, access to medical care, transportation, and discrimination. She notes that Latino children are historically 50% less likely to be diagnosed with ASD than their white peers. Research has identified several common reasons this happens: language barriers and a lack of culturally specific assessment criteria.

In some Latino households, one or both parents may only speak Spanish while the children are bilingual. Researchers found that these parents were less likely to notice language delays and communication issues compared to families in which parents and children all consistently speak the same language(s). “[In these cases] you don’t have the family bringing in the child and asking for a referral,” says Dr. Brumback. 

Cultural expectations can also mask some autism symptoms. “In many cultures, including many Latino cultures, making direct eye contact is considered impolite,” Dr. Brumback says. “So the fact that a child is not making good eye contact isn’t necessarily picked up on, because it’s not as striking a difference between them and [other children] developing typically.”

How Research Is Bridging the Gap for a Better Future

Creating inclusive and readily available educational resources about autism and its full potential range of symptoms can help Latino parents recognize signs and symptoms at early ages. Dr. Brumback hopes that spreading awareness will lead to more parents seeking assessments for their children. 

Advanced diagnostic tools, such as the Criteria Diagnostic Interview (CRIDI), will also make a significant impact in reducing disparities in diagnosis for people with ASD. Researchers in Mexico led by Lilia Albores-Gallo, PhD, designed CRIDI specifically for Latino families. 

“This team of professionals took the best parts of all of our English-language assessments, all of our interviews and rating scales, and translated it into Spanish,” Dr. Brumback says. “But they also redesigned it so that it was reflecting cultural differences—they wrote it using colloquial language. What they found is that this actually works really well to diagnose children.”

Following the successful use of this new tool in Mexico, Central America, and South America, the American Brain Foundation is funding research to see if it will work for Latino families in the United States. “These pilot grants that [the American Brain Foundation] offers are really transformational,” says Dr. Brumback.

The pilot study pairs Dr. Brumback with other researchers evaluating CRIDI versus routine clinical care, developmental testing, and the Autism Diagnostic Observation Schedule (ADOS). Once the pilot study in Austin, Texas is complete, the researchers plan to test their diagnostic tool on a national scale.

Focusing on DEI in autism research will lead to earlier and more accurate diagnoses for all people. Funding more studies is critical to developing better clinical assessments for diagnosis and treatment plans, and to improving quality of life for individuals with autism and their families. 

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