Autism Service Disparities for People of Color

Changing Our Practices to Catch Missed Diagnoses and Gaps in Treatment

How do service disparities impact neurodivergent people and what can we do to provide wider and more inclusive care? 

Autism is a neurological condition that occurs in all communities of different backgrounds, socioeconomic statuses, and cultures. However, the true prevalence often doesn’t match with current identification rates, leading to missed diagnoses and gaps in treatment.

The challenge in creating equality in autism service and identification not only impacts marginalized groups but the larger ASD community and the field as a whole. Awareness and education can be incredibly effective in changing the way autism is approached and perceived.

What Are the Service Differences and Causes?

The likelihood of an ASD diagnosis can differ between white children and children of color, with a 19% higher chance of ASD diagnosis for White children as compared to Black children and a 65% higher chance as compared to Latinx children.¹ Additionally, the age of diagnosis may be delayed for Black and Latinx children, which may be due to the different diagnoses children of color receive prior to, or instead of, autism such as “Adjustment Disorder” or “Conduct Disorder”.⁶

Some children of color may not be diagnosed or assessed at all, leading to missed opportunities for service programs or misaligned treatment for a condition other than autism. For children of color who are accurately diagnosed with autism, they may face even greater challenges when seeking services. This issue is especially notable in Black families who have reported challenges with autism services such as exclusion, distance barriers, insurance coverage limited program quality, and lack of culturally specialized care.²

The causes behind this disparity or inequality in autism diagnosis and care can be linked to societal stereotypes about what populations autism typically presents in, potential unconscious biases of autism professionals, general accessibility issues, and specific cultural values.

Researchers and Research: The Need for Growth in Diversity

The abundant research on White autistic populations and the frequent media portrayal of autism in White individuals contribute to a harmful implicit bias that autism presents most in White children, potentially leading to lower diagnosis rates among Black children.⁴ 

The initial source of this problem may, in part, be that autism research data has the reputation of not being fully inclusive of all races or groups.⁹  Additionally, the research field itself needs improvement in its inclusion and treatment of Black researchers for both fidelity and inclusion in studies.⁵ However, we are now seeing a promising shift as the field has become more proactive in the inclusion of populations of color within research studies.

Autism Professionals: Improvement Still Needed to Aid Diagnosis and Treatment

Within the autism service profession, the challenge is most prominent in its need for improvement on cultural competency and implicit bias, which is an unconscious evaluation of people based on societal perceptions of their traits; implicit biases have been evident in healthcare in general and have been shown to have negative effects on client care.³

In one study about the misdiagnoses children of color received before an accurate autism diagnosis, it was hypothesized that the misdiagnoses could be based on the professionals’ beliefs about condition prevalence within an ethnic population or their own inaccurate perceptions of parents’ reports.⁶

Teachers, BCBAs, and other professionals working with autistic students are predominately White. More work needs to be done to prioritize the education and recruitment of diverse clinicians that would then improve the accuracy of early detection and culturally competent treatment and services provided to autistic children of color. 

Key Factors Impacting Autism Diagnoses within Families of Color 

Families of color themselves may also be a factor in the autism service disparity from cultural beliefs to the wider social barriers they encounter, thus further emphasizing the need for culturally educated providers and a more inclusive social response.

The following factors were found to be important challenges that need to be addressed when improving diagnosis rates for children of color:

• Financial costs and resources
• Language differences
• Limited autism symptom knowledge within families
• Transportation and location accessibility challenges
• Medicaid limitations in financial coverage and provider options
• Lack of provider diversity or awareness of their own unconscious racial biases
• Poor working relationships between healthcare professionals and families of color
• Discrimination
• Cultures, such as Mexican culture or Black communities, with instances of general shame or non-acceptance of autism^7&2

The challenges that families of color experience with receiving autism diagnoses and services have no singular cause. It’s not a failing of the service profession, research field, insurance system, or families themselves, but rather a larger social issue that needs to be addressed for the benefit of the neurodivergent community.

Awareness of the Challenges is the First Step

It is vital for researchers and autism service professionals to become aware of this issue for the benefit of the field and, most importantly, the clients. As educators, school administrators, therapists, and parents, understanding the challenges families of color experience with autism treatment will help in identifying ways to be more proactive so more families can receive the support they deserve.

Being aware of larger social issues and implicit biases does not mean that those are the genuine beliefs held among the profession, but understanding the context that impacts both professionals and clients will help strengthen the treatment they receive and prevent negative impacts on people of color with autism.

The negative impacts that autism underdiagnosis and misdiagnosis have on neurodivergent people of color often last into adulthood beyond missed treatment opportunities. Recently, there was a discussion among autistic panelists of color detailing their experiences with autism inequality within marginalized contexts.⁷

Some of the mentioned effects of the autism service disparity among communities of color based on their personal and professional experiences were:⁷

• Societal doubt or invalidation about their autism diagnosis as an individual of color

• Having to strongly advocate to receive their own autism diagnosis

• Delayed or inaccurate diagnoses

• Safety and legal concerns preventing the pursuit of an autism diagnosis

The effects on autistic people of color go beyond this list and the referenced panel discussion, but learning about similar experiences directly through communities of color and people of color with autism is the best way to understand the issue and how to help.

Solution Through Inclusion

Similar to the fact that this challenge doesn’t have a singular cause, there also isn’t a singular solution. The actions that can help and are helping communities of color receive equal autism diagnoses and care include:

• Equally evaluating all students for conditions prior to formal discipline based on behaviors ⁸
• Telehealth screenings and services ¹
• Education among autism service professionals about the common, as well as their personal, beliefs and facts about autism frequency and symptom presentation within communities of color ⁶
• Education and recruitment of more service providers of color to help provide culturally relevant services to children
• Pursuing multiple autism screenings and evaluations from different providers to advocate for a diagnosis ⁴
• Making treatment fit each family’s culture, background, and values with direct insight from individual families ²
• Working with families to identify credible sources for autism education and resources for financial support to increase both awareness and accessibility

Awareness and Action

People of color with autism and their families experience challenges with receiving timely and accurate diagnoses, accessible care, and equal support.

This impact extends beyond communities of color into schools, therapy practices, insurance companies, and households. Recognizing the challenges that potential or current clients experience and learning directly from autistic communities of color is essential to benefit the field and client treatment.

What steps can be taken today to work towards autism service equality for all communities? Tell us your thoughts in the comments section below.

We hope you enjoyed the information in this article. STAGES® Learning also offers free downloadable resources to support teaching and learning with individuals with autism. Start with our free Picture Noun Cards and see our collection of other downloadable resources here!

References

https://link.springer.com/article/10.1007/s40617-021-00577-5#citeas

3. FitzGerald C, Hurst S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics. 2017 Mar 1;18(1):19. doi: 10.1186/s12910-017-0179-8. PMID: 28249596; PMCID: PMC5333436. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5333436/

https://journals.sagepub.com/doi/10.1177/1362361320948313

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861330/ 

https://www.liebertpub.com/doi/10.1089/aut.2020.29015.drj 

9. UNC Frank Porter Graham Child Development Institute. (2022, February 16). Study shows lack of representation across historically minoritized racial and ethnic groups in autism intervention data. https://fpg.unc.edu/news/study-shows-lack-representation-across-historically-minoritized-racial-and-ethnic-groups-autism