Autism and the Myth of Objectivity in Health Studies

One area of importance within the mental health field is the assessment, diagnosis, and treatment of autism. Autism is a neurodevelopmental disorder typically marked by difficulty with social interactions and communication, repetitive behaviours, and specific interests and activities in the individuals (Autism Canada). The term was first used by psychiatrist Eugen Bleuler in 1911 in his studies and attempts to define schizophrenia, with autism being used to describe childhood schizophrenia (Evans 2013). Later work by psychiatrist Leo Kanner observed children on the autism spectrum, in which he described behaviour marked by difficulty to relate to others, calling it “autistic disturbance of affective contact” rather than Bleuler’s “‘autism’ of schizophrenia” (Evans 2013). Much of today’s knowledge and understanding of autism comes from Kanner’s work (Autism Canada). In the 1980 publication of the DSM-III, the definition of autism was included in a new category of pervasive developmental disorders and was very focused on infantile/childhood autism. It was with this publication and redefinition that autism was no longer considered a form of schizophrenia (Volkmar & Reichow 2013). In the most recent and currently used edition, the DSM-V, the category of pervasive developmental disorders was replaced with the more accurate autism spectrum disorder (ASD), to better describe the wide range (spectrum) of individuals with autism and their different symptoms. (Volkmar & Reichow 2013). The current diagnostic requirements for ASD require a child to “have persistent deficits in each of the three areas of social communication and interaction, plus at least two of four types of restricted, repetitive behaviours” (Centers for Disease Control and Prevention 2022). These areas of social communication include social-emotional reciprocity, nonverbal communicative behaviours used for social interaction, and maintenance and understanding of relationships. The four types of restricted repetitive behaviours are repetitive motor movements, insistence on sameness, fixated interests (typically referred to as one’s special interest) and hyper or hyporeactivity to sensory input such as textures, lights, sounds, or smells) (DSM-5).

Kanner’s work was predominantly based on studies of young male subjects. Subsequently, much of the research that followed was also done on male samples and autism has largely been understood and diagnosed in males, with little to no female specific studies on the disorder, as well as large gaps in diagnoses between males and females (ratio of approximately 4:1 male:female) (de Giambattista et al. 2021). Because research and understanding of autism is based on how it presents in males, specifically young, English speaking males, those with autism who do not follow these moulds tend to go undiagnosed, which can have harmful effects from childhood into adulthood. Because much of the research on autism has been focused on assessment and diagnosis in young children, assessment and treatment for those who are diagnosed later in life is limited. Studies that have looked at more general samples, as opposed to only those referred to receive an autism assessment, have reported a lower male/female ratio of 2-3:1, suggesting that it is the methods of assessment and diagnosis that result in un/misdiagnosis (de Giambattista et al. 2021).

As previously mentioned, most research on the diagnosis and treatment of autism has been done in Western, English speaking cultures on white, English speaking male children (Sassu & Volkmar 2023), presenting problems in recognizing autism in individuals who differ from these categories. Because autism diagnosis criteria tends to operate under the notion of being neutral, just as much of biomedical research does, racial, gender, and cultural differences are not taken into consideration in assessment. Inevitably, certain groups of people are excluded, and this method does not consider how these “neutral” assessment tools do not include how personal differences may influence how autism presents in a person (Sassu & Volkmar 2023; Sharma 2019). Linguistic differences must be considered in order to efficiently assess multilingual children, whose communication may differ from those who speak only one language and thus how they are assessed under communication categories (Sassu & Volkmar 2023). Due to communication differences such as these, Hispanic youth are less likely to go undiagnosed than white, non Hispanic youth. Black children tend to receive diagnoses later than white children, more commonly being diagnosed with attention deficit hyperactivity disorder (ADHD) or adjustment/conduct disorders, and they tend to experience increased difficulty in accessing services. This is thought to go back to the medical professional conducting the assessment and their personal expectations or biases of their patients (Sassu & Volkmar 2023), illustrating the issue of “neutrality” in the medical field and in autism diagnosis, specifically. It may also illustrate historical understandings and stereotypes of Black people and their children; autistic behaviour is more commonly viewed in Black children as adjustment and conduct disorders, which are typically viewed as being caused by outside factors such as poverty and parental issues (Nationwide Children’s), potentially reiterating past notions of white paternalism on the “immature” (Black) child race in need of white intervention and thereby reinforcing and “justifying” racism (Rollo 2018), as well as causing unnecessary harm to the child by the misdiagnosis.

Gender is another factor that causes issues in assessment and diagnosis of autism. This is thought to be a result of diagnosis criteria being focused on social communication problems, and young girls’ “strong” social skills. This belief is largely incorrect, hence strong being in quotations, as autistic girls are thought to be better at social imitation of their neurotypical peers, including imitating social behaviours such as speech, and childlike behaviours such as pretend play (Cridland et al. 2014). Because of their “strong” social skills (their ability to successfully imitate their peers), their autism is masked and goes unnoticed, contributing to delayed diagnosis (Cridland et al. 2014). While this masking may “help” them at younger ages, it is not enough to keep up with and maintain social relationships come adolescence, as these relationships become more complex and thus imitation is not adequate enough a skill. Adolescent girls on the spectrum also typically need longer time to process information and this then makes joining conversation with their peers more difficult (Cridland et al. 2014). Evidently, the current diagnostic criteria is not beneficial in diagnosing girls with autism and, as a result, they are unable to receive the adequate treatment and support. This is largely due to the historical research and understanding of autism being based on how it presents in boys, without consideration for how gender may create differences. Not only this, but the focus being on early detection and diagnosis creates further obstacles for girls with autism as much of their symptoms and social difficulties caused by their autism do not become very evident until they reach adolescence. This could also potentially contribute to the desexualization of disabled girls; because diagnosis and treatment is focused on early intervention, adolescent girls first recognizing their autism are subject to childlike, infantile attention from doctors. This focus on early detection, regardless of gender, contributes to the idea that “people with disabilities are unfinished adults” (Rice 2018, pp. 549), however this is especially so in girls as they are more likely to be forcibly asexualized as a means to have their mind align with their body and vice versa (Rice 2018). 

Underdiagnosis of girls with autism further contributes to focus on research surrounding boys with autism. This then creates increased difficulty for girls accessing treatment for their autism, as parents, teachers, and medical professionals become increasingly socialized to understand autism as a “boy’s” disorder and thus continue to overlook and misdiagnose girls on the spectrum (Watts 2023). This also creates obstacles for girls who do receive a diagnosis, as much of the treatment options are catered towards boys and their interests, and therefore further isolate autistic girls (Cridland et al. 2014). This increased isolation impacts mental health and could contribute to issues such as substance use disorders as a way of coping with the burden of masking their autism and attempting to fit in with their non autistic peers (Weir et al. 2021). This relates to the previously discussed topic of concurrent disorders and emphasizes the need for diagnostic criteria and treatment to address both disorders, rather than if only one were present. 

These issues illustrate the need for a change in research, diagnosis, and treatment. In recent years, self advocacy and the perspectives from those with autism have been increasingly popular as a way of better understanding the needs of one with autism. Attention that was exclusively on diagnosis and intervention in young children has also changed, as recognition of adults with later diagnosis is given increased importance, with emphasis on their needs of appropriate care and support (Autism Canada), as studies focusing on adult diagnoses demonstrate the unique struggles and supports needed in adulthood for both coping with the disorder, as well as coping with past harmful experiences as a result of delayed diagnosis (Stagg & Belcher 2019).