Diagnostic Symptoms & Patterns
Autism Spectrum Disorder (ASD) is a neurological developmental disability that causes individuals to have lifelong difficulties in communication, interpretation and behavior. ASD is most commonly referred to as a developmental disorder because symptoms first appear within the first two years of a person’s life.[1] Commonly observed ASD symptoms within a child’s first 24 months include:[2]
- Limited social interaction (avoiding eye contact, disinterest in interactive games)
- Repetitive behaviors (playing with the same toy, having obsessive interests)
-Delayed language and/mobility
-Mood or emotional reactions that deviate from the norm
-High comorbidity with anxiety, depression, and attention-deficit hyperactivity disorder (ADHD)
As a spectrum disorder, it is common to see different combinations and severities of ASD symptoms in each diagnosed person. Regardless of which symptoms manifest in a person, treatment typically still has the potential to effectively mitigate some of ASD’s long-term challenges. With proper intervention and therapy, adults with ASD are often capable of achieving significant autonomy and social integration.[3] But, early detection is crucial. The American Academy of Pediatrics recommends that all children receive “well-child visits” (including screening for autism) at 18 and 24 month appointments; the sooner a child with symptoms receives an accurate screening, the sooner they are able to begin effective intervention and treatment.[4] Through assessment methods such as observation, blood tests and interactive tests, the accuracy of ASD assessments continues to improve - thus improving the odds of developmental and social progress in children with ASD.[5]
In 2023, there was a groundbreaking shift in autism diagnosis statistics: for the first year in U.S. history, Black and Hispanic youth were diagnosed at a higher rate than their White counterparts.[6] This comes after decades of underrepresentation of autism in minority populations. However, understanding racial differences in access, culture and environment among marginalized communities provides insight into the progress required to see continual improvements in ASD disparities.
Early Assumptions
When Leo Kanner first published his observations in 1943, he referred to this condition as “early infantile autism” and asserted that it occurred most often in children belonging to White middle and upper-class families.[7] Unfortunately, Kanner overlooked the reality that the parents who could typically seek help regarding their child’s developmental problems were likely those with resources, privilege and access to appropriate healthcare. In the 1940s those parents were almost exclusively White, and decades later White children continue to have disproportionate access to autism treatment and resources.[8,9] Research from the Center for Disease Control (CDC) has since established that ASD has no disposition toward a particular ethnic group, so factors other than biological differences contribute to White American children receiving the quickest and most frequent ASD diagnosis of all socioeconomic groups.[10]
ASD in Black Children
According to a 2017 study conducted by the American Journal of Public Health, Black children are 19 percent less likely than their White counterparts to receive an autism diagnosis.[11] Similarly to other health disparities in America, high poverty rates and limited access to treatment facilities contribute to autism’s underdiagnosis in Black Americans. Research continues to identify racism as one of the greatest determinants in a person’s long-term health.[12] It is estimated that Black Americans live four years less than their White counterparts from compounding issues that contribute to a poorer quality of life (e.g., Black Americans are under-represented in higher income jobs and have a disproportionately high rate of chronic diseases in comparison to their White counterparts).[13]
Addressing this socioeconomic gap is crucial to improving Black Americans’ ASD diagnosis. Research conducted between 2002 and 2010 on the prevalence of autism in White, Black and Hispanic children found autism diagnosis was higher in high socioeconomic Black Americans than their counterparts. Therefore, diminishing socioeconomic differences is key to improving ASD diagnosis for all Black Americans, who remain the demographic with the lowest average annual income in America.[14,15]
Diagnosis issues also tend to arise when Black families seek autism treatment facilities with concerns. The majority of school documentation of ASD children identifies the child’s history as “bad behavior” instead of a developmental disorder.[16] A 2007 study conducted at the University of Pennsylvania found that Black children with ASD are 5.1 times more likely to be misdiagnosed with behavior disorders before they are correctly diagnosed with autism.[17] Another 2007 study found that African-American children were 5.1 times more likely than White children to receive a diagnosis of adjustment disorder, and 2.4 times more likely to receive a diagnosis of conduct disorder.[18]
Racist stigmas labeling Black children as rude, unruly, and aggressive also extends to teachers. A 2020 American Psychological Association study on 178 prospective teachers across universities in southeastern states revealed that the majority of teachers within the study inaccurately observed anger in both genders of Black children at higher rates than of White children. The implications of this study extend to autism: teachers and other school administrators (e.g., school psychologists) play an instrumental role in referring children for further behavioral assessments.[19]
ASD in Hispanic Children
In past decades, Hispanic children were diagnosed at an average 65% lower rate than their White counterparts.[20] Recent strides in autism awareness within the Hispanic community have contributed to their improvements in ASD diagnosis, but there are still improvements to make in resources, treatment accessibility and awareness. Similarly to Black children, Latino children often have delayed diagnoses caused by low socioeconomic standings and limited accessibility to treatment and resources.
Spanish is also the second highest primary language spoken in the U.S, and is a factor that has been identified as both a barrier to identifying ASD and a communication challenge between parents and healthcare providers. In a 2004 study by Shapiro et al. 16 young, low-income Hispanic mothers described feelings of “alienation” in their interactions with healthcare providers.[21] The mothers described how information was not always explained enough and if a translator is not present, they felt as though they missed a lot of information.[22] Another study conducted in 2016 by Steinberg et al. found that Spanish-speaking parents are often asked less about their developmental concerns even if their child is known to be at risk, and have reported trouble connecting with providers because they are treated as though they lack knowledge.[23] These experiences not only dissuade parents from asking questions, but also intensify a caregiver’s skepticism, as families with limited English proficiency report less trust in providers compared to English proficient families.[24]
Emerging solutions to disparities in ASD diagnosis/treatment
There are growing resources available to help families from underrepresented communities better understand and identify ASD in their children, aiding in diagnosis and treatment and help close these racial disparities.
The Autism Society of Los Angeles (ASLA) runs a hotline at (424) 299-1531 to help parents navigate the diagnosis and healthcare landscape. This organization also offers services in English and Spanish, providing families the resources they need without a financial burden.[25]
The Children's Hospital, Los Angeles employs liaisons to connect families to further assessment, locate other treatment facilities and gain general support. This hospital is physically located in Los Angeles, and it also provides a virtual autism assessment that can be accessed at: https://chla.purview.net/patient/start.
“Autism in Black” is a non-profit that aims to provide support to black parents who have a child on the spectrum, through educational and advocacy services like podcasts, free consultations and hosting outreach events to better educate local communities. Managed by licensed mental health providers, “Autism in Black” is grounded in a mission to improve awareness of and reduce the stigma associated with ASD in the Black community.[26]
The Center for Disease Control (CDC) has a “Learn the Signs. Act Early.” program that provides free resources in English and Spanish to monitor children’s development starting at 2 months of age. Additionally, by downloading the CDC’s free Milestone Tracker mobile app, caregivers can log and monitor their child’s behavior to later share with healthcare providers.[27]
Community-based Intervention for ASD
JAMA Pediatrics (2022) conducted analysis of decades of autism studies and found that compounding factors increase the likelihood of early morbidity for individuals with autism in comparison to the general population as well as for minorities in comparison to their White counterparts.[28] Under this consideration, marginalized individuals with ASD are uniquely vulnerable to compounding issues related to how they must navigate the world due to their racial identity and neurodivergence (e.g., non-verbal communication, self-harming, and dependence on a caretaker).[29]
People of color have a higher likelihood of limited availability of treatment centers, fewer services provided by Medicare providers, and of belonging to a lower socioeconomic group.[30] Equal access to healthcare is the foundation for children with mental disabilities to find the resources and treatment plans that will enable them to not only survive but also reach their full. With Hispanic people comprising both the largest minority population in the United States and the majority of the 25 million people in the United States with limited English proficiency, healthcare must continue to make adjustments in order to ensure that ASD is not only diagnosed accurately for this population, but healthcare providers also need to ensure that this demographic continues to feel supported as they navigate this complex condition.[31] Similarly, Black Americans continue to face the greatest discrimination of any group in America, and improving access to timely quality ASD treatment is crucial.[32]
As a growing pediatric concern, ASD was found to occur in 1-in-125 children in 2018 only to triple to 1-in-36 in 2023.[33] As the ASD population increases and the conversation shifts towards finding the resources to assist individuals on the spectrum better integrate into their communities, understanding the health disparities that affect progress is paramount. By diminishing the barriers to affordable and accessible care for marginalized communities, autism advocates will continue to become better equipped to serve the diverse population of individuals with ASD.
Help and support are available: If you or someone you know is struggling to obtain an ASD diagnosis and/or treatment, please reach out to a licensed mental health professional (e.g., a psychotherapist, psychologist or psychiatrist) for guidance and support.
Contributed by: Kate Campbell
Editor: Jennifer (Ghahari) Smith, Ph.D.
References
1 National Institutes of Health. Autism Spectrum Disorder. National Institute of Health Website. Updated 2023. Accessed June 12, 2023. https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd
2 Centers for Disease Control and Prevention. Signs and Symptoms of Autism of Spectrum Disorder. Centers for Disease Control and Prevention Website. Updated March 28, 2022. Accessed June 12, 2023. https://www.cdc.gov/ncbddd/autism/signs.html
3 Whiteley, P., Carr, K., & Shattock, P. (2019). Is Autism Inborn And Lifelong For Everyone?. Neuropsychiatric disease and treatment, 15, 2885–2891. https://doi.org/10.2147/NDT.S221901
4 Durkin, M. S., Maenner, M. J., Baio, J., Christensen, D., Daniels, J., Fitzgerald, R., Imm, P., Lee, L. C., Schieve, L. A., Van Naarden Braun, K., Wingate, M. S., & Yeargin-Allsopp, M. (2017). Autism Spectrum Disorder Among US Children (2002-2010): Socioeconomic, Racial, and Ethnic Disparities. American journal of public health, 107(11), 1818–1826. https://doi.org/10.2105/AJPH.2017.304032
5 Ibid.
6 Centers for Disease Control and Prevention. Autism Prevalence Higher, According to Data from 11 ADDM Communities. Centers for Disease Control and Prevention Website Updated March 23, 2023. Accessed June 10, 2023.
7 Rosen, N. E., Lord, C., & Volkmar, F. R. (2021). The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond. Journal of autism and developmental disorders, 51(12), 4253–4270. https://doi.org/10.1007/s10803-021-04904-1
8 American Psychiatric Association. (2023). New Research Points to Disparities in Autism Prevalence and Access to Care. Last updated April 23, 2023. Accessed June 20, 2023. https://www.psychiatry.org/news-room/apa-blogs/disparities-in-autism-prevalence-and-access
9 Mandell, D.S., Listerud, J., Levy, S.E., Pinto-Martin, J.A. (2002). Race Differences in the Age at Diagnosis Among Medicaid-Eligible Children with Autism. Journal of Child & Adolescent Psychiatry, 41(12), 1447-1453. https://doi.org/10.1097/00004583-200212000-00016.
10 Centers for Disease Control and Prevention. Spotlight on Closing the Racial and Ethnic Gaps in the Identification of Autism Spectrum Disorder among 8-year-old-Children. Centers for Disease Control and Prevention Website. Last updated March 23, 2023. Accessed June 23, 2023. https://www.cdc.gov/ncbddd/autism/addm-community-report/spotlight-on-closing-racial-gaps.html
11 Ibid.
12 Paradies, Y., Ben, J., Denson, N., Elias, A., Priest, N., Pieterse, A., Gupta, A., Kelaher, M., & Gee, G. (2015). Racism as a Determinant of Health: A Systematic Review and Meta-Analysis. PloS one, 10(9), e0138511. https://doi.org/10.1371/journal.pone.0138511
13 Price, J. H., Khubchandani, J., McKinney, M., & Braun, R. (2013). Racial/ethnic disparities in chronic diseases of youths and access to healthcare in the United States. BioMed research international, 2013, 787616. https://doi.org/10.1155/2013/787616
14 Mehta, N. K., Lee, H., & Ylitalo, K. R. (2013). Child health in the United States: recent trends in racial/ethnic disparities. Social science & medicine (1982), 95, 6–15. https://doi.org/10.1016/j.socscimed.2012.09.011
15 The Urban Institute.(2009). Racial and Ethnic Disparities among Low-Income Families [Fact sheet]. https://www.urban.org/sites/default/files/publication/32976/411936-racial-and-ethnic-disparities-among-low-income-families.pdf
16 Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of autism and developmental disorders, 37(9), 1795–1802. https://doi.org/10.1007/s10803-006-0314-8
17 Halberstadt, A. G., Cooke, A. N., Garner, P. W., Hughes, S. A., Oertwig, D., & Neupert, S. D. (2022). Racialized emotion recognition accuracy and anger bias of children’s faces. Emotion, 22(3), 403–417. https://doi.org/10.1037/emo0000756
18 Ibid.
19 Centers for Disease Control and Prevention. Spotlight on Closing the Racial and Ethnic Gaps in the Identification of Autism Spectrum Disorder among 8-year-old-Children. Centers for Disease Control and Prevention Website. Last updated March 23, 2023. Accessed June 23, 2023. https://www.cdc.gov/ncbddd/autism/addm-community-report/spotlight-on-closing-racial-gaps.html
20 Shapiro, J., Monzó, L. D., Rueda, R., Gomez, J. A., & Blacher, J. (2004). Alienated advocacy: perspectives of Latina mothers of young adults with developmental disabilities on service systems. Mental retardation, 42(1), 37–54. https://doi.org/10.1352/0047-6765(2004)42<37:AAPOLM>2.0.CO;2
21 Ibid.
22 Steinberg, E. M., Valenzuela-Araujo, D., Zickafoose, J. S., Kieffer, E., & DeCamp, L. R. (2016). The "Battle" of Managing Language Barriers in Health Care. Clinical pediatrics, 55(14), 1318–1327. https://doi.org/10.1177/0009922816629760
23 Ibid.
24 Warm Line. (2021). Autism Society of Los Angeles. https://www.autismla.org/1/program/speaker-series/
25 Advocacy, Education, and Support. (2023). Autism in Black. https://www.autisminblack.org/
26 About CDC’s Learn the Signs. Act Early. Program. (2023). Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/wicguide/about-cdcs-learn-the-signs-act-early-program.html
27 Ferrán, C. L., Hutton, B., Page, M.L., Driver, J.A., Ridao, M., Arroyo, A.A., Valencia, A., Saint-Gerons, D.M.,Tabarés-Seisdedos, R. (2022). Mortality in Persons With Autism Spectrum Disorder or Attention-Deficit/Hyperactivity Disorder. JAMA Pediatr, 176(4), e216401. https://doi.org/10.1001/jamapediatrics.2021.6401
28 Ibid.
29 Ibid.
30 Steinberg, E. M., Valenzuela-Araujo, D., Zickafoose, J. S., Kieffer, E., & DeCamp, L. R. (2016). The "Battle" of Managing Language Barriers in Health Care. Clinical pediatrics, 55(14), 1318–1327. https://doi.org/10.1177/0009922816629760
31 Dietrich, S., Hernandez, E. (2022). What Languages Do We Speak in the United States? United States Census Bureau Website. Last updated December 06, 2022. Accessed June 27, 2023.
32 The Texas Politics Project. Most Discriminated Group (April 2022). The Texas Politics Project at the University of Texas at Austin Website. https://texaspolitics.utexas.edu/set/most-discriminated-group-april-2022
33 Centers for Disease Control and Prevention. Data and Statistics on Autism Spectrum Disorder, Centers for Disease Control and Prevention Website. Last updated April 4, 2023. Accessed June 25, 2023.