Equitable and Comprehensive Autism Testing

Written by Dr. Irma Campos, Ph.D., Licensed Psychologist

Background on Autism and Prevalence Rate Among Diverse Groups

Autism Spectrum Disorder (also referred to as ASD) is a Neurodevelopmental Disorder hypothesized to develop as a result of interactive genetic/biological and environment factors. It is considered a mental disorder, per the American Psychiatric Association’s Diagnostic and Statistical Manual-Fifth Edition. There is no known single cause of ASD. ASD is diagnosed on a continuum of severity from Level 1 to Level 3. ASD symptoms often present at an early stage of development during toddlerhood. Symptoms may not become notable until a child enters preschool or school when social-communication deficits and restricted, repetitive behaviors are more readily observed.

ASD occurs among all racial/ethnic and gender groups. However, Latino/Latina children are more likely to be underdiagnosed compared to White American and African American children (see https://www.cdc.gov/ncbddd/autism/addm.html). Boys are four times more likely to be diagnosed with ASD (see https://www.cdc.gov/ncbddd/autism/addm.html), which is believed to be partially attributed to gender biases in the diagnostic process. With advances in ASD research and treatment, an early diagnosis (before preschool age) has been associated with more favorable results, as noted here. Therefore, early, comprehensive, and equitable ASD evaluations are imperative to increase the likelihood of positive outcomes for children of diverse sociocultural backgrounds.

Comprehensive and Egalitarian Autism Testing Process

Despite national calls and programs (e.g., US Centers for Disease Control and Prevention program) to identify ASD early, 39% of children eventually diagnosed with ASD did not have a comprehensive evaluation until after 4 years of age (Baio et al., 2014). Notably, 85% of these children’s parents observed concerns and symptoms before 3 years of age.

The typical initial step in a comprehensive and equitable ASD evaluation includes a thorough screening process for any toddler or child showing signs/symptoms of ASD. A screening is recommended to identify possible ASD and common co-occurring disorders. Notably, some disorders (e.g, Attention-Deficit/Hyperactivity Disorder and Intellectual Disabilities) may present in association with ASD, and thus, a thorough screening process is highly recommended to provide recommendations about follow-up assessments or specialty provider recommendations. Screenings are often conducted by medical professionals, such as pediatricians, whereas comprehensive assessments that provide a specific diagnosis and level of severity should be conducted by trained mental health and ASD specialty providers (e.g., Licensed Doctoral Psychologists). If a parent chooses, they may proceed to a comprehensive ASD evaluation rather than first engaging in the screening process.

When researching a provider for a comprehensive and formal evaluation, it helpful to inquire about the provider’s experience in diagnosing ASD across the lifespan with diverse individuals. A comprehensive ASD evaluation should include a clinical interview or initial assessment; review of relevant records; and administration of any clinically recommended Autism-specific or related assessments, such as the ADOS-2, IQ assessments, and symptom rating scales. The assessments that are selected and administered should be standardized using diverse and generally representative samples to reduce gender or racial/ethnic bias. In addition, providers should be trained in multicultural competence, cultural humility, and social justice models (see Goodman et al., 2004) with the aim of reducing bias in the diagnostic process and promoting equality in general. This process is considered a life-long one with intentional actions (e.g., continuing education in understanding one’s own implicit and explicit biases) required on behalf by the provider. In sum, comprehensive and equitable ASD evaluations are urgently needed to address racial/ethnic and gender disparities in ASD-related diagnoses and treatment.

References

Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Robinson Rosenberg, C., White, T., Durkin, M. S., Imm, P., Nikolaou, L., Yeargin-Allsopp, M., Lee, L. C., Harrington, R., Lopez, M., Fitzgerald, R. T., Hewitt, A., Pettygrove, S., … Dowling, N. F. (2018). Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. Morbidity and mortality weekly report. Surveillance summaries (Washington, D.C. : 2002), 67(6), 1–23. https://doi.org/10.15585/mmwr.ss6706a1

Goodman, Liang, Helms, Latta, Sparks, & Weintraub (2004). Training counseling psychologists as social justice agents: Feminist and multicultural principles in action. The Counseling Psychologist, 32, 793-837.

Photo by Chinh Le Duc on Unsplash

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