Many people considering an autism diagnosis encounter frustration. Accessibility issues, insurance barriers, and a lack of clear starting points all contribute to the challenge. Perhaps most disheartening is the possibility of scoring just below the diagnostic threshold despite living the experience. This frustration stems in part from a system heavily influenced by capitalist and colonialist perspectives. It’s time to critically examine these paradigms.
The Colonial Roots of Autism and Normality
The concept of a “normal” or a neurotypical mind is itself a construct heavily influenced by Western colonialism. Colonial powers imposed their own social and behavioral norms on indigenous populations, often disregarding traditional ways of knowing and being. This legacy persists in our understanding of autism, which is measured against a narrow definition of normalcy rooted in specific Western values.
- Emphasis on Individualism: Western cultures often prioritize independence and self-reliance. Social interaction styles valued in autism diagnoses, like strong eye contact and initiating conversations, reflect this individualistic ideal. However, collectivistic cultures may prioritize interdependence and group harmony, where different communication styles are valued.
- Productivity as a Measure of Worth: The “work ethic” ingrained in Western societies emphasizes productivity and efficiency. Diagnostic criteria focusing on social and communication skills that contribute to workplace success can be seen as an extension of this value. This disregards the contributions of individuals who may excel in areas outside traditional work structures.
- Social Norms: Social norms around emotional expression and nonverbal communication that are “appropriate” are determined by the majority. Diagnostic criteria that emphasize limited facial expressions or difficulty understanding sarcasm reflect these norms. However, other cultures or people of other neurotypes may have more nuanced expressions or different forms of social interaction.
The Behavioral Focus of the DSM and ICD Criteria
The DSM criteria for autism are heavily behavior-based, focusing on observable behaviors. According to the DSM-5-TR, the current criteria for Autism Spectrum Disorder (ASD) include:
1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by:
- Deficits in social-emotional reciprocity
- Deficits in nonverbal communicative behaviors used for social interaction
- Deficits in developing, maintaining, and understanding relationships
2. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following:
- Stereotyped or repetitive motor movements, use of objects, or speech
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior
- Highly restricted, fixated interests that are abnormal in intensity or focus
- Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment
The ICD-11 criteria are similar, emphasizing deficits in social interaction and communication, along with restricted, repetitive behaviors and interests. This behavioral focus inherently categorizes people based on how they deviate from neurotypical norms, which can lead to a form of “othering”—viewing and treating those who differ as fundamentally separate or inferior.
The DSM uses a limited categorization system: level 1 (“requiring support”), level 2 (“requiring substantial support”), and level 3 (“requiring very substantial support”), which oversimplifies the diverse ways one can experience their identity. These levels are often based on the perceived severity of symptoms and the level of support needed, but they fail to account for the dynamic nature of autism and how individuals’ needs can change over time and across different environments.
I would go even further to challenge the way we think about disability vs. impairment. “Disability” is created by systemic oppression and societal barriers. The challenges faced by autistic individuals often stem from a society that is not designed to accommodate neurological diversity. By focusing solely on behaviors and perceived deficits, traditional diagnostic methods overlook the profound impact of structural oppression. This flawed approach pathologizes individuals rather than addressing the societal changes needed to accommodate and include neurodivergent people.
Capitalism and the Pressure to Conform
While the focus on deficits seems rooted in a desire to categorize and potentially “fix” individuals, it’s also intertwined with capitalist values. First, the diagnostic process itself is often fraught with financial barriers. Required tests, high assessment costs, and limitations on accessing accommodations create a system that privileges those who can afford it. Many families struggle with prohibitive costs, limited specialists, and insurance restrictions, creating disparities in who receives diagnoses and the support that often follows. Often times, insurance companies, psychiatrists, and other professionals require specific evaluations done to confirm the diagnosis. This economic gatekeeping disproportionately impacts those from lower socioeconomic backgrounds.
Most importantly, capitalist economies prioritize efficiency and productivity. The current diagnostic criteria for autism, with their emphasis on social interaction and communication skills, can be seen as reflecting these values. Essentially, the diagnostic framework may unconsciously identify traits that hinder participation in a traditional workforce as “symptoms” needing correction.
This perspective overlooks the vast talents and contributions that autistic individuals can bring to society, even if they don’t conform to a specific mold. It also fails to consider the ways in which workplaces themselves could be adapted to be more inclusive of neurodiversity. By acknowledging this capitalist influence, we can challenge the idea that the “norm” is inherently superior.
The Impact of Masking and Other Forms of Neurodiversity
One significant issue that contributes to the underdiagnosis of autism is the phenomenon of masking. Many autistic individuals, especially women, non-binary individuals, and people of color, learn to mask their autistic traits to fit societal norms. This camouflaging can make it difficult for clinicians to recognize autism, leading to many individuals going unnoticed and unsupported. Masking often leads to significant mental health challenges, including anxiety, depression, and burnout, as individuals expend tremendous effort to conform to neurotypical expectations.
Many also argue that the traditional approach of testing and diagnosing does not account for the diversity of autistic experiences. For example, neurodiverse individuals with Pathological Demand Avoidance (PDA), Highly Sensitive Persons (HSPs), or those identified as gifted in childhood may exhibit traits that overlap with autism but are often misunderstood or overlooked in conventional assessments.
Neurodiversity-Affirmation
Neurodiversity-affirmation is a paradigm shift that recognizes and values the diversity of all neurological configurations. Rather than viewing autism as a disorder to be fixed, it sees it as a natural variation of the human experience. This approach emphasizes the importance of creating environments that accommodate and celebrate neurodivergent individuals, rather than forcing them to conform to neurotypical standards.
In a neurodiversity-affirming practice, the focus is on understanding and supporting the unique needs and strengths of each individual. This involves:
- Validating Lived Experiences: Listening to and valuing the personal experiences of autistic individuals, recognizing that they are the experts of their own lives.
- Promoting Strengths: Identifying and nurturing the strengths and talents of autistic individuals, rather than focusing solely on their challenges.
- Inclusive Environments: Creating inclusive and accessible environments that accommodate sensory sensitivities and other needs, fostering a sense of belonging.
- Challenging Norms: Questioning societal norms and expectations that pathologize neurodivergence, advocating for systemic changes that promote acceptance and inclusion.
Moving Forward
The path to truly understanding and supporting autistic individuals lies in dismantling the capitalistic and colonial biases embedded in our diagnostic and therapeutic practices. By adopting a neurodiversity-affirming approach, we can begin to appreciate the richness of human diversity and create a more inclusive and compassionate society. As we move forward, it is crucial to engage in continuous learning, challenge outdated doctrines, and amplify the voices of neurodivergent individuals. We can pave the way for a future where all minds are valued and celebrated.