Why do current Autism statistics fail to reflect the true number of Autistic people? What makes getting an official Autism diagnosis so challenging for many individuals?
In Unmasking Autism, Devon Price reveals the significant barriers and biases that exist within the diagnostic process for Autism. He discusses numerous factors that prevent many Autistic individuals from receiving formal recognition of their neurodivergence.
Keep reading to learn why Autism self-diagnosis is becoming an increasingly valid and necessary option for many people seeking to understand their neurotype.
The Case for Autism Self-Diagnosis
Price explains that the rate of Autism is probably much higher than current statistics suggest, largely due to biases in (and lack of access to) diagnosis. He argues in favor of Autism self-diagnosis (which he refers to as self-determination), explaining that Autistic people without a formal diagnosis are just as valid as those with one. In his book, he discusses several challenges related to Autism diagnosis that make self-diagnosis a more viable option.
Price asserts that diagnoses are usually based on an Autistic person’s behaviors and others’ perceptions of them—particularly behaviors that inconvenience or pose a problem to others—which are highly subjective, difficult to measure, and don’t always accurately reflect an Autistic person’s feelings and experiences.
(Shortform note: While current diagnostic criteria are still based on subjective observations of an Autistic person’s behavior, ongoing research into Autism shows promise for more objective testing methods to be developed in the future. Multiple studies have identified differences in Autistic eye function: Using eye tracking technology, one study noted a difference in how Autistic children pay attention to physical cues when watching social interactions, and another found differences in the way some Autistic people’s eyes move when they turn their heads. Still another study identified differences in the way Autistic people’s pupils respond to light. Incorporating this research into diagnostic criteria could provide more reliable means of testing.)
Price adds that the diagnostic criteria were developed based on children, mostly white, relatively affluent boys. This makes it particularly difficult for women, gender minorities, BIPOC, and poor people to get diagnosed, meaning Autistic people in these demographics often go undiagnosed well into adulthood—or even their entire lives. And, since their Autistic traits often don’t present the same way they do in white male children, their symptoms can be misattributed to other conditions, making them more likely to receive misdiagnoses like borderline personality disorder or schizophrenia. This tendency is exacerbated by the fact that Autism frequently presents with one or more comorbidities, including ADHD, epilepsy, and various learning disorders.
(Shortform note: Research has identified additional biases in medicine that compound the issues Price notes. Studies show significant gender and racial discrepancies in medical treatment: Women who complain of pain tend to be taken less seriously than men, and they’re more likely to be diagnosed with a mental illness when showing symptoms of heart disease. Black people are also taken less seriously when seeking care for pain, and medical professionals often hold implicit racist beliefs like the misconception that Black people are more prone to drug misuse. Poor people also tend to receive inferior treatment. All of these factors increase the barriers Autistic people must go through to receive a diagnosis.)
Additionally, many people don’t have insurance, or they have insurance that doesn’t cover Autism assessment or treatments.
(Shortform note: Autistic advocates note that the cost of Autism assessment can be even higher when an evaluation incorrectly identifies someone as not-Autistic, requiring them to pay for a second evaluation to get an accurate diagnosis. This makes Autism self-diagnosis seem like an even more viable option—and while some critics of self-determination worry that the practice may lead to large numbers of people incorrectly identifying as Autistic, research shows that self-diagnosis rates for Autism are generally highly accurate.)
