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As autism diagnoses increase, especially in marginalized groups, experts call for better funding, research inclusion, service access, and workforce diversity.

The CDC estimates that one in 36 children aged 8 years old has autism, representing a more than a four-fold increase since 2000. For the first time, the rate of autism diagnosis is higher among Black and Hispanic/Latine populations and for those from a lower socioeconomic background, although they continue to face diagnostic disparities compared with White populations.

To address these clinical gaps, a paper published in Pediatrics identifies four priorities for future improvement: funding, improving representation in autism research, service quality, and workforce development.

“Although there has been considerable progress in diagnosing autism in people from minoritized racial and ethnic backgrounds, the autism field must begin to devote more resources and attention to improving services and quality of life for minoritized autistic people,” Diondra Straiton, PhD, tells Physician’s Weekly.

The Quality of Autism-Related Services

While autism-related services span many areas, the researchers highlighted physical health services, behavioral health services, educational services, and employment services as crucial for people with autism.

Those from marginalized backgrounds often face difficulty accessing these services. Common barriers include language barriers, a lack of cultural understanding from service providers, and longer waitlists to use these services in underserved areas.

While these barriers are well-identified, there are no established recommendations for overcoming them. Dr. Straiton and colleagues pointed to potential solutions, such as stepped care models, developing low-cost interventions, group parent coaching, and more inclusive classrooms.

“In addition to providing referrals for diagnostic services, pediatricians can consider providing families with reputable local service options for families of children with developmental delays,” Dr. Straiton says.

Improving Representation in Autism Research

Only 25% of studies on autism report on race and ethnicity, based on a large-scale systematic review cited by Dr. Straiton and her team. That systematic review suggests that minoritized groups are under-represented in autism research.

The demographic split found across analyzed studies was:

• Latine/Hispanic participants: 9.4%
• Black participants: 7.7%
• Asian participants: 6.4%
• Middle Eastern participants: 1.2%
• Native American participants: less than 0.1%
• Native Hawaiian or Pacific Island participants: 0.1%
• Multiracial participants: 3.8%
• Unknown or non-White participants: 9.0%

Under-representation leads to limited or possibly inaccurate clinical and cultural guidelines for clinicians, highlighting a need to diversify autism research, according to the researchers.

Development of the Autism Workforce

The workforce serving people with autism is small and understaffed, especially in rural and urban neighborhoods. Areas with high levels of poverty and low levels of autism services are commonly referred to as “service deserts”, Dr. Straiton and colleagues noted.

On top of staffing problems, the autism workforce doesn’t have a great representation of clinicians from minoritized backgrounds or who speak multiple languages. Only 2.2% of developmental pediatricians are Black; 9.2% are Asian and 6.8% are Hispanic/Latine.

To diversify the workforce and support those who currently work in this understaffed field, Dr. Straiton and colleagues offered three main recommendations:

• Adjust autism clinician recruitment to include more applicants from under-represented backgrounds
• Provide funding at the regional, state, and federal levels to subsidize training efforts for autism clinicians
• Support clinicians who are already in the autism field by offering subsidized advanced training opportunities

Funding for Autism Services

Poor funding practices negatively impact workforce retention, as well as the quality of autism services. Funding issues are primarily due to state mandates that insurance companies are required to reimburse autism-related healthcare costs. These mandates are correlated with a higher prevalence of lower-paid autism professionals, such as board-certified behavioral analysts, and a decrease in higher-paid professionals, like pediatricians. Lower-paid positions lead to higher turnover, negatively impacting the quality of services.

“I hope this paper can help inspire more people to join these efforts and ultimately transform our communities into more affirming places where autistic people can thrive,” Dr. Straiton says.