The pandemic lockdown left many people with a lot of time on their hands. This abundance of time to think and reflect has led many to new discoveries about themselves and the world around them. For some that discovery was that they are most likely autistic. However, some question the validity of their neurodivergency without a formal diagnosis. While it is worth being cautious, there are many reasons why self-diagnosed neurodivergency is valid.
One problem that many adults run into when trying to get a formal autism diagnosis is that many doctors will not see them. Fewer doctors see autistic adults compared to autistic children, which means that the ones who do see adults can often be expensive and/or booked out for long periods of time.
There is also the fear that when they do go to see that doctor they will not be fully heard. An assistant professor at the University of Vermont who specializes in research regarding autistic adults, Laura Foran Lewis’ paper A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults addresses the obstacles that autistic adults may have to face when trying to receive diagnosis from medical practitioners.
“Nine overall themes emerged as potential barriers to formal diagnosis among adults who believed they had ASD, including: anxiety, cost, access to adult ASD specialists, fear of not being believed, inability to describe symptoms, mistrust of healthcare professionals, stigma, complexity of the healthcare system, and lack of perceived value of formal diagnosis,” says Foran Lewis.
Autism diagnosis also has a gender bias, as people assigned female at birth(AFAB) are diagnosed at a lower rate than those assigned male(AMAB). Often, AFAB people have differing symptoms than AMAB people and because autism research has been largely based on white males, their symptoms are not always recognized.
An article from Altogether Autism, a New Zealand based organization that provides credible information to autistic people and others, summarizes why the world of autism diagnosis and research is biased. Researcher Liliya John says in the article, “Since the diagnostic criteria for autism is developed based on research and considering that females are underrepresented in most clinical samples, the diagnostic criteria itself is biased. This in turn reinforces the male bias in diagnostic tools and instruments, perpetuating the exclusion of females in the way autism is both defined and diagnosed.”
There are differing standpoints on autism self-diagnosis in the medical field. Some doctors feel that self-diagnosis can be a way for people to better navigate their worlds. While others make valid points that self-diagnosis can lead to misdiagnosis or in some cases self-medication. However, there are many downsides to trying to live your life as neurotypical when you are not, and some may feel that this outweighs the negatives of self-diagnosis.
A positive effect of self-diagnosis is that people, who have likely done extensive research before concluding that they are autistic, start to make accommodations for themselves. People with auditory processing disorders wear headphones or earplugs in classes. People with tactile sensory issues wear gloves at work. Students who are nonverbal opt for different modes of communication.
People would have the opportunity to make their lives easier by understanding their autism before pursuing formal diagnosis if they so choose to. One of the biggest barriers for many autistic people is the willingness of others to be understanding and accepting that some people need to approach everyday situations in a different light.
