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Barriers to diagnosis: the function of self-diagnosis in neurodivergent and disabled communities

Self-diagnosis isn’t ironclad, and sometimes people get it wrong. Crucially, however, so do psychiatrists.

Self-diagnosis in popular media is generally viewed as a dangerous, misleading or attention-seeking act. However, the truth is that there are many barriers to receiving a medical diagnosis. In this article, I will explain why the situation isn’t as black and white as we’d like to think.

Many mental illnesses and psychosocial disabilities are diagnosed based on self-reported patient information. Diagnosis can be an expensive, time consuming and difficult process. Many medical professionals charge steep prices, which are not affordable if not covered by health insurance or government rebates. Diagnosis of autism can cost up to $2000 out of pocket, and very few psychiatrists offer assessment for adults; those who do are usually working in private practices. Waitlists can take months or years, especially in rural areas. Psychologists and social workers are not considered legally capable of diagnosing psychiatric or developmental disabilities. For people who are financially, socially, or physically dependent on their families, their families may be prejudiced or unwilling to recognise and get help for a potential mental illness.

This leaves people without answers, without support, and without coping strategies, assuming that they’re just broken or weird for struggling with ‘normal’ tasks. Self-diagnosis isn’t something that people do for fun or attention; it is something people do out of necessity.

Online community spaces for neurodivergent groups (like Facebook groups and Discord channels) are increasingly and vocally accepting of self-diagnosed individuals. Some health experts and medical professionals have also come out explicitly supporting the increase in self-diagnoses. 

Medical professionals are not a uniform body of competent experts who agree on issues. Specialists and psychiatrists, like all people, are also products of the society and times they live in. They are also subject to societal opinions and misinformation. Diagnostic categories for psychiatric and cognitive conditions are constantly changing based on developments in scientific thinking, and new and conflicting research comes out every day. Some practitioners simply aren’t up to date with new and potentially life-changing developments in the field and still continue to operate on outdated information they learnt five decades ago at medical school. Many people receive multiple different diagnoses, many of them potentially incorrect before arriving at one that leads to effective treatment. 

Many psychiatric and developmental conditions use patient questionnaires as part of the diagnostic process.  For people who can’t (yet) access diagnosis from a medical professional, taking the initiative to look up symptom questionnaires can help them to figure out coping strategies. It can also help them to find community with other disabled and neurodivergent people.

Lists of symptoms are often quite specific and require the patient to be able to recognise their own behaviours as a function of these symptoms. A lot of these symptoms have historically been framed as personal failures, and people are likely to not identify them as a symptom. ADHD symptoms like being distractible, messy, and tardy have often been stigmatised and mislabelled as a general disregard for others and/or laziness.

The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM V) and the International Classification of Diseases (ICD) are the classification manuals used to define disorders, but there is controversy around the validity of how some conditions are understood. ‘Autism Spectrum Disorder’ is framed by the DSM and ICD as primarily behavioural, and neglects the sensory aspect. Recent research has shown that the diagnostic criteria regarding ‘social deficits’ is misleading: autistic people have no problems socially interacting and communicating with other autistic people. The problem is communication across neurotypes: neurotypical people struggle to communicate with autistic people, and vice versa. Labelling this as autism causing ‘social deficits’ is a fundamental misunderstanding of how autistic interaction works.

Even after all of these hurdles have been crossed, and a person is in a doctor’s office and trying to explain their symptoms, it is often the case that these people tend to underreport their own struggles. People who are born neurodivergent face these struggles since birth and this state of being is normal for them. They are much less likely to identify something as a struggle because they have never known a life without that struggle. Secondly, they also learn a lot of masking behaviours to be able to survive in the first place. These behaviours take a huge toll on their wellness, but because they allow them to function within society, it is assumed that they are equivalent to a neurotypical person.

Self-diagnosis isn’t ironclad, and sometimes people get it wrong. Crucially, however, so do psychiatrists. A 2019 study in Psychiatry Research concluded that ‘psychiatric diagnoses are scientifically worthless’, due to several factors including overlapping categories, lack of recognition of the impacts of trauma, and inconsistent decision-making rules. This means that one patient can see three different psychiatrists and get three different diagnoses. Studies on the reliability of psychiatric diagnosis have shown that we still have a long way to go before we can consider diagnostic classifications to be reliable and reproducible. 

To conclude, there are so many hurdles to getting a diagnosis. And while we would love to live in a world where every person can get an accurate medical diagnosis as soon as they notice problems with their health, difficulties with social interaction, communication, sensory overload, or executive function, it is often not possible. I would rather people look up their problems, and figure out a working theory to help them find coping mechanisms and community support, rather than continuing to struggle alone and blaming themselves for the difficulties of being neurodivergent in a neurotypical world.