4 Steps for Flipping the Script from Autism Awareness to Autism Acceptance

The stigma around autism diagnosis remains strong—and, unfortunately, it can prevent children from getting the diagnosis they need in a timely manner, especially during the pandemic.

A 2020 study found that Black children typically face delays in autism diagnosis of 3 years. These delays occur even when families have health insurance, according to the study. One in 3 families reported significant wait times to see a specialist and 2 in 5 saw multiple professionals before receiving a diagnosis—with an astonishing 14% seeing 6 or more specialists before getting an answer regarding the behaviors they were seeing.

Stigma around autism in certain cultures can contribute to delays in seeking expert care in a timely manner. For example, in Arizona, Hispanic children are 1.6 times less likely than white children to be diagnosed with autism and 1.9 times less likely than Black children, a Centers for Disease Control & Prevention (CDC) report shows. Cultural barriers and lack of resources are partly to blame. Additionally, Hispanic children often attend preschool at a later age than children of other ethnicities, so their chances of being exposed to a teacher who might spot signs of autism at an earlier age are lower.

Where do stigmas around autism originate?

In the Latino community, some families do not have a strong understanding of what autism is, let alone the symptoms that could point to a diagnosis. Among Asian communities, there are high levels of discomfort in discussing autism and what a diagnosis could mean for their child’s future. Meanwhile, among Black families, delays in autism diagnosis contributes to children not receiving the care early on in their lives—and could lead to increased burden on parents and caregivers to support the child. Further, there tends to be a lack of support for autism diagnosis from faith-based organizations. When this occurs, families may be hesitant to reach out to a pediatrician, preferring instead to trust in religious leaders or leaders in their communities.

It’s time to “flip the script” from autism awareness to autism acceptance—and it starts with behavioral health professionals. Here are a few ways professionals in our field can address stigma:

1. Educate families that autism spectrum disorder (ASD) isn’t just a condition for white children. It’s easy for parents of all backgrounds to see television shows such as “The Good Doctor,” where a young white man with autism and savant syndrome navigates life as a surgeon and assume that ASD is a Caucasian disorder. However, recent research shows there is no significant difference between the percentage of white children and Black children who are diagnosed with ASD. This is a new finding that is vital to share with parents as well as the behavioral health community. With 1 out of 54 children who are 8 years old living with ASD, ensuring that families and healthcare professionals have the right information is a critical first step in breaking the stigma and getting children with ASD the help they need.
    
2. Train behavioral health professionals to spot the signs of ASD. From the age of 14 months old, diagnoses of ASD are highly stable, a University of California San Diego study found. As a result, it is critical that pediatricians and primary care physicians as well as behavioral health professionals know the signs of ASD so they can direct children and families toward expert help and resources that could make a difference. With ASD, time is of the essence: The earlier that children with ASD receive services, the better their health outcomes. For example, if a child receives treatment early, there is less risk of developmental delays becoming permanent. A recent University of California San Diego study indicates children should receive ASD services as early as 18 months. During this time, the brain is able to acquire new skills at an earlier age. Additionally, some symptoms may improve over time with the right therapies.
    
3. Provide virtual pathways to ASD diagnosis and therapy. One of the challenges faced by children with ASD and their families during the pandemic is that access to school-based and community health-based resources has been harder to come by. Additionally, there have been fewer opportunities for socialization, one-on-one help with speech or writing skills, and more, especially in disadvantaged communities. One way behavioral health can help bridge this gap is by taking advantage of the explosion in telehealth services—with visits increasing 3,000% in 2020—to pair children and parents with virtual support. This could include not only visits with pediatricians and behavioral health specialists to diagnose a child, but also appointments with therapists and other care professionals.
    
4. Ensure that parents of children with ASD receive behavioral health support. The isolation that parents of children with ASD experienced during the pandemic left some parents with signs of post-traumatic stress disorder due to the challenges of caring for their child on their own, with few outlets for outside connection. As a result, some parents’ cortisol levels resembled those of veterans coming home from war. Establish online parent groups for children with ASD. Make parents aware of technology platforms, such as gaming platforms, that are designed specifically with an ASD child’s needs in mind. Offer customized solutions for parents of children with ASD that meet their behavioral health needs. Doing so can improve quality of life for both the parents and, ultimately, the child.

By shifting the focus from autism awareness to autism acceptance, behavioral health leaders can help erase the stigma of autism, strengthening care and outcomes for children and their families.

Yagnesh Vadgama is a board-certified behavioral analyst and vice president of clinical care services, autism, for Magellan Health.