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Autism
How a Snapshot of Autism Neglects the Bigger Picture
This Autism Acceptance Month, advocate for more inclusive diagnosis of autism.
Posted April 25, 2022 Reviewed by Devon Frye
Key points
- Autism spectrum disorder diagnostic procedures overlook the experiences of girls and minorities, resulting in underdiagnosis of these groups.
- Inclusive diagnosis of autism means more people have the opportunity for self-understanding and community.
- Undiagnosed people with autism may internalize the reason for their bullying or rejection as a personal fault, not ableism.
By Quinn Becker and Kathleen Bogart
Previously referred to as Autism Awareness Month, advocates have rebranded the month of April as Autism Acceptance Month. This change in vocabulary emphasizes the need for not only a more informed world but also a more inclusive world for people with autism.
While education is an important first step, action is ultimately needed to tackle the barriers people with autism face in areas such as employment, education, housing, health care, and more. Changes like these are great for those with an autistic identity, but what about people with autism who are barred from receiving a diagnosis altogether and are possibly unaware of their identity?
Who Gets to Be Autistic?
Understanding of autism spectrum disorder (ASD) is improving in the field of psychology every year, yet many gender, racial, and ethnic minorities who have autism are still misdiagnosed or overlooked entirely. Despite advancements, diagnostic criteria for ASD continue to center the presentation of white boys.
On average, white people receive diagnoses and resources for ASD more frequently than people of color, even though the true rate of ASD is thought to be similar across races. Boys are four times more likely to receive a diagnosis of ASD than girls; however, a recent meta-analysis suggests that the ratio of boys to girls with ASD is 3:1, suggesting that girls with ASD are being overlooked,
A clinician’s implicit or explicit bias is a factor in these diagnostic errors, but the issue goes further than a single person’s perspective. Researchers point out that diagnostic assessments for autism were often created to detect the stereotypical white male presentation, thus excluding people with autism who present outside of this limited set of behaviors. Despite the cultural awareness of the clinician, many people with autism still leave examinations undiagnosed because diagnostic practices and education surrounding ASD are limited.
There Is No Singular Presentation of Autism
The different ways people experience the world greatly affect their behavior, including autistic behaviors, meaning that diagnostic standards created for one group or culture cannot be representative of ASD as a whole. For instance, related to ASD or not, girls tend to internalize their behaviors while boys are more likely to externalize their behaviors. Externalized autistic behaviors could look like expressive meltdowns, uninhibited blunt communication, or openly stimming through hand flapping, rocking back and forth, word repetition, and more.
For people with autism, internalization of behavior commonly manifests as camouflaging, the act of hiding autistic characteristics and actively presenting allistic (non-autistic) characteristics to fit in. They might repress their meltdowns, monitor their speech and expression closely to fit in, or change their stimming behaviors to something more socially acceptable like drawing circles on their paper or tapping a pen.
It is understandably harder to notice or diagnose someone actively hiding their autistic traits, but this divergent presentation goes further than just camouflaging, as many behaviors can vary depending on the person. This does not mean that all gender, ethnic, or racial minorities present the exact same way because of their identity, but differing presentations commonly associated with different groups alongside the aforementioned diagnostic gap may suggest an uninclusive model of ASD in the psychiatric field.
Racial Bias and Misdiagnosis
The white boy-centered model of ASD can steer clinicians’ expectations and exacerbate the effect of racial bias as well, as many people of color who present typical traits of ASD remain undiagnosed. For instance, African American kids may externalize their behavior like their white autistic peers, but they are five times more likely to be misdiagnosed with a conduct disorder. For racial and/or ethnic minorities, another challenge in the diagnostic process is the impact of language barriers and cultural norms. If the person and/or their family cannot effectively communicate with the diagnostic professional, symptoms and concerns may be overlooked or misattributed to their culture or ethnicity, leading many to go undiagnosed.
Autistic Burnout and the Mental Health Risk of Misdiagnosis
This oversight is dangerous and puts autistic people at risk for serious mental health issues, especially if they have intersecting identities that increase this risk. People with autism are at a higher risk of bullying and rejection, and because undiagnosed people do not have an accurate understanding of their differences, they internalize the reason for their rejection as a personal fault and not the result of an ableist society.
Receiving the message that one is socially undesirable has a profound negative impact on one’s self-esteem and mental health, as many autistic people equate social worth with self-worth. Wanting to avoid the pain of social rejection, many will begin to camouflage, and while they may feel more socially accepted, constantly monitoring and suppressing behaviors while pushing beyond one’s limits to fit in an allistic world is psychologically taxing and unsustainable.
Eventually, people with autism may hit a breaking point and experience autistic burnout. People in the throes of autistic burnout can experience exhaustion, damaged social skills, worsened memory, decreased coping abilities, increased risk of sensory overload, depression, insomnia, and even suicidal behavior.
Undiagnosed people with autism experiencing autistic burnout can be misdiagnosed and treated for depression, but this puts their mental health at an even greater risk. Treatments of depression often encourage social contact, new experiences, or exercise routines, but people going through autistic burnout report needing decreased social contact, sensory environments they can control, and rest to recover. The nature of depression and autistic burnout are so different that the treatment of one can exacerbate the other, creating even worse circumstances for the undiagnosed person with autism.
The Importance of Identity and Community
Although these challenges are still present for people diagnosed with ASD, their diagnosis gives them the chance to form a positive autistic identity that increases their resilience, reduces the likelihood of autistic burnout, and buffers the negative impact of living in an ableist society. If someone grows up learning that ASD isn’t a bad thing, they are less likely to internalize the aforementioned message of rejection that their autistic traits are undesirable.
Even a basic education and understanding of their differences can help them adapt to an allistic world or find resources that respect their needs. People do not need to form autistic pride as a child to benefit from it, but it is better to start earlier when the brain is still in the process of identity formation and most receptive to learning.
People with an autistic identity can also connect with a supportive autistic community that enhances autistic pride, connects them to resources, provides collective coping strategies, and gives them an understanding space where they can practice their social skills and feel accepted. Together, autistic pride and community ties increase self-esteem, lower rates of depression, increase feelings of control, buffer the negative impact of ableism, and give autistic people a higher sense of meaning in life. A diagnosis does not guarantee these outcomes, but you are more likely to pursue a community you know you are a part of and develop pride for something you are aware of.
Increasing Acceptance This Month and Beyond
Every person with autism deserves to have an understanding community and positive autistic identity, but these experiences are taken away from many people in gender, ethnic, and racial minority groups. The diagnostic criteria and education about ASD need to be more inclusive of people in these groups. Additionally, there is a clear need for more diversity in psychology and other mental health fields and bias training to avoid cultural barriers and discrimination.
Let Autism Acceptance Month be a reminder that inclusion and action are needed. People should not shame autistic individuals for self-diagnosis, especially in autistic communities. We do not need to mimic the faults of a biased, sometimes inaccessible diagnostic system. Autistic pride and community support are important for mental health, and in a world where so many are undiagnosed and unsupported, it is better to open our arms in acceptance for people who may not need it than to close them to people who do.
Quinn Becker is an undergraduate student in the School of Psychological Science at Oregon State University and a student in Dr. Bogart’s Psychology of Disability class.
