Autism Acceptance Month: Raising awareness and closing the diagnosis gap

April is National Autism Awareness Month, and April 2 is World Autism Awareness Day. In the United States, there appears to be a heightened level of awareness of this condition over the past 10-15 years that has helped reduced its stigma, improve early identification, and (most importantly) increase access to early interventions for children and families.

Dr. Jason Emejuru

The most recent prevalence estimates of autism in children in the United States is 1 in 54. This is a 10% increase since 2014 (1 in 59). Those most recent Centers for Disease Control and Prevention surveillance reports also point to a reduction in the racial gap between Black and White children when it comes to diagnosis.¹ Across the globe, there are more than 100 autism societies, and research designed to improve prevalence data in lower- to middle-income countries has also increased.²

Even with these recent encouraging numbers regarding identification of autism in historically underrepresented groups in the United States, there are still differences among those groups, compared with children who are socioeconomically well-off, White, or live in large urban areas.³ Specifically, Latinx children were documented to be identified with autism at lower rates, compared with Whites and Blacks. In addition, Black and Latinx children are still diagnosed at a later age, compared with White children. This is important to note because historically, Black and Latinx children have been diagnosed with severe forms of autism or co-occurring intellectual disability at a higher rate, compared with their White counterparts.⁴ Thus, it would not be inappropriate to infer that Black and Latinx children with “milder” presenting autism symptoms or without co-occurring ID are not identified at the same rates, compared with their White peers. Furthermore, when peering into the international data, epidemiologic studies regarding prevalence, clinical course, and outcomes is skewed heavily toward a few Western industrialized nations, Japan, and South Korea.⁵

In all, when observing Autism Awareness Month, we should continue to recognize that these aforementioned epidemiologic disparities still exist – both locally and globally. The global COVID-19 pandemic has almost certainly worsened these disparities because both clinical and research work have consequences that are not yet fully known. As long as these trends remain, racial and socioeconomic differences in access to treatment in the United States will remain. From an international perspective, we may never appreciate the true extent of the cultural variability within autism symptoms and so may never appreciate the full spectrum of ways the condition can present.

References

1. MMWR Surveill Summ. 2020 Mar 27;69(4):1-12. Erratum in: MMWR Morb Mortal Wkly Rep. 2020 Apr 24;69(16):503.

2. Lancet Glob Health. 2018 Oct;6(10):e1100-21.

3. Am J Public Health. 2009;99(3):493-8.

4. J Dev Behav Pediatr. 2011 Apr;32(3):179-87 and MMWR Surveill Summ. 2019;68(2):1-19.

5. Brain Sci. 2020;10(5):274. doi: 10.3390/brainsci10050274.

Dr. Emejuru is a child and adolescent psychiatrist with Community Hospital of Monterey Peninsula (CHOMP) and its Ohana Center for Child and Adolescent Behavioral Health in Monterey, Calif. His expertise is specific to conducting evaluations for autism spectrum disorder and evaluating, diagnosing, and treating co-occurring psychiatric disorders after training at the Johns Hopkins Hospital/Kennedy Krieger Institute’s Center for Autism and Related Disorders in Baltimore. He has no conflicts of interest.