Many research studies indicate that contextual factors play a role in who gets diagnosed, the type of diagnosis, who gets treatment, and the type of treatment provided.1
Is it possible for a child to be misdiagnosed with Autism Spectrum Disorder (ASD) due to race or socioeconomic status? Or for a child with ASD symptoms to not be diagnosed at all? Is it possible for medical providers, teachers, parents, and therapists to misinterpret --or miss altogether-- presenting symptoms? You may be understandably concerned that a child is not receiving an accurate diagnosis; and we know that an accurate and timely diagnosis is essential to developing and successfully implementing a treatment plan.
Multiple studies have identified that early diagnosis of ASD and early intervention are necessary for optimal outcomes in an autistic child’s cognitive functioning, communication, and behavior.1 The medical model leads practitioners to focus on the individual, and the specific diagnostic criteria. So how important are contextual factors, such as race, socio-economic class, and gender? Here we’ll explore the topics of medical errors, simple human fallibility, and how contextual factors intersect with and influence such errors.
We would all prefer to believe that accurate diagnoses and effective treatments are routinely given by medical providers, and indeed this appears to be the case much of the time. However, in hospital settings and outside such settings, medical errors are estimated to be the third-highest cause of unnecessary deaths.2 ASD is not a life-threatening disorder, but the point here is that medical providers do make errors. According to the National Center for Biotechnology Information (NCBI), the most frequent error is in diagnosis. How does this happen? It may be, in part, that some facts in a particular patient’s case are overlooked (errors of omission), while others appear prominent; treatment may be out of proportion to symptoms and may have undesirable side effects (errors of commission). The NCBI states that medical errors are also caused from communication failures: providers failing to communicate with each other, with parents, and failing to use qualified language interpreters when needed.
As you can see, medical errors can happen easily, and it is important to note that such errors are not typically the result of reckless practice, nor malicious intent. But good intentions are not enough. Carver et al mention the role of bias in medical errors, particularly in regard to persons with psychiatric illnesses.2 Given that medical providers are human beings like you and me, they are susceptible to stereotypes and biases. Different providers may have different biases regarding psychiatric illnesses, gender, race, and social class. We live in a world in which assumptions are made about individuals who exhibit behaviors that are outside of social norms. Such assumptions fall into the category of what psychologists call the fundamental attribution error. For example, if a co-worker is routinely late to work, you might think that person is lazy, careless, disorganized -- in other words, you attribute their behavior (being late) to some internal quality or characteristic. In fact, that person needs to drop their child off at daycare and it doesn’t open until the same time that work starts -- a situation outside of the individual’s control.
How might the fundamental attribution error play out in a diagnostic situation? The symptoms of lack of eye contact, deficient communication skills, or unusual behavior evident with ASD children could be misinterpreted as a failure in parenting, or of a hostile or spoiled child. Are there certain populations that have unfairly been stereotyped as hostile? Over-indulgent? Absentee or lazy parents?
While it is beyond the scope of this article to detail all the ways in which gender, ethnicity, race, geographic location, and social class have historically influenced psychiatric diagnoses, suffice it to say that all these factors play a role in how an individual and a family are perceived by medical providers and by teachers. A multitude of studies finds routinely, and over time, that these contextual factors play a role in who gets diagnosed, the type of diagnosis, who gets treatment, and the type of treatment provided.1 While research shows that the actual occurrence of ASD is equal across race, ethnicity, and socioeconomic status, the existence of diagnoses vary widely among these groups.3 For a thorough and impressive exploration of how African-Americans in particular have avoided medical providers due to centuries of medical abuse and exploitation, see Harriet Washington’s outstanding book: Medical Apartheid.7
Research on social class issues in the United States shows that the fundamental attribution error is very common when students from blue-collar families are assessed in school and other settings. Kastberg found that low-achieving students from poorer families were seen as “lazy, stupid, or unmotivated;” sometimes they were seen as “rough” and to be avoided as physically dangerous.4 Contextual factors were not considered by persons from more advantaged backgrounds in evaluating these students; rather, the qualities of the individual (and family) were assumed to be deficient. Writer bell hooks, in writing about discriminatory practices against African-Americans, concluded that the primary issue is not race, but social class.5 That is, while race is clearly a factor in how people are perceived in the United States, social class prejudice cuts across race, gender, and ethnicity.
We know that more boys are diagnosed with ASD than girls.6 Might a girl’s symptoms be overlooked, simply because they don’t fit the typical profile of a child with ASD? Are certain ethnic or racial populations more or less likely to be diagnosed? Becerra et al found that Caucasian children were about 50% more likely to be diagnosed with ASD than other children.3 Immigrant children for whom English is a second language were more likely to be diagnosed with ASD along with Intellectual Disability and a Communication Disorder. These researchers also pointed out that not all populations have equal access to the most sophisticated instruments for evaluating symptoms and determining the most accurate diagnoses; thus, we might reasonably wonder if medical errors are at work in these diagnoses or lack thereof.
Parents may be the first to identify ASD symptoms. To whom do they speak about the child’s symptoms? Friends? Family? Pediatrician? Priest? And how might these various listeners respond? And just as frequently, ASD symptoms are first noticed by a teacher when the child enters school. To whom does that teacher report the symptoms and, perhaps, a need for evaluation of that child? A school psychologist? A school nurse? An administrator? Is a clinical diagnosis derived from a thorough clinical evaluation, or is an Individual Education Plan (IEP) developed? How might these play out differently? As you can see, the process is complicated from the very beginning, and there are multiple spaces for an ASD child to be undiagnosed, or misdiagnosed, and to ultimately not receive the specific services they need in order to thrive.
1.Nowell, K.P., Brewton, C.M., Allain, E. et al. The Influence of Demographic Factors on the Identification of Autism Spectrum Disorder: A Review and Call for Research. Rev J Autism Dev Disord 2, 300–309 (2015). https://doi.org/10.1007/s40489-015-0053-x
2. Carver N, Gupta V, Hipskind JE. Medical Error. [Updated 2021 Feb 16]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2021 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK430763/
3. Becerra, T. A., Ehrenstein, O. S. von, Heck, J. E., Olsen, J., Arah, O. A., Jeste, S. S., … Ritz, B. (2014). Autism spectrum disorders and race, ethnicity, and nativity: a population-based study. Pediatrics, peds.2013–3928. http://doi.org/10.1542/peds.2013-3928.
4. Kastberg, S. (2007). Servants in the house of the masters: A social class primer for educators, helping professionals, and others who want to change the world. New York, NY: iUniverse, Inc.
5. hooks, bell (2000) Where We Stand: Class Matters. Routledge: New York.
6. American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders, 5th edition, Arlington VA.
7. Washington, H. (2006). Medical Apartheid. Harlem Moon: New York.