The impact of the Diagnostics and Statistics Manual (DSM) on the lives of autistics cannot be understated. It is the manual that all American social workers, counselors, therapists, and psychologists are taught in school. It defines all the “disorders,” including symptoms and behaviors. It thus shapes how all mental health professionals see autism.
While there are many benefits to having one manual that provides consistency across the mental health field, it can also be limiting in many ways.
Autism was originally developed by scientists observing young white boys. The majority of studies that then shaped the symptomatology of “Autism Spectrum Disorder” were based on these white boys. It means that the symptoms of autism are skewed toward this population. This leaves out a large group of people - namely other races, genders, and ages.
It’s why so many people are undiagnosed or misdiagnosed. You can read more about that in my essay To Diagnose or Not?.
The field of autism is rapidly expanding right now due to the neurodiversity movement. More and more autistic individuals are sharing their experiences and enhancing our understanding of autism.
For example, we now know far more about “masking” and how autistics can hide their autistic characteristics around others. However, they are still feeling and thinking as an autistic internally. A diagnostician with knowledge of masking behavior will be better able to identify autism in an adult.
Trouble is, the DSM-5 doesn’t contain information about masking. It simply hasn’t caught up yet. Thus, many mental health practitioners are unaware of it. As a result, they often dismiss and gaslight their clients who suggest they might be autistic. You can read more about this in my essays The Harm Done When I Didn’t Know I Was Autistic and Your Therapist Doesn’t Know as Much About Autism as You Think They Do.
Until 2013, the DSM wouldn’t allow dual diagnosis of ADHD and Autism. This meant that researchers couldn’t examine this topic because the DSM said co-occurrence wasn’t possible. It’s now expected that a large percentage of autistics also meet the criteria for autism. I was diagnosed with both autism and ADHD. However, when I asked my psychologist for more information about what it means to live with both, she had none for me (don’t worry though, she said she’s writing a book).
There simply isn’t enough research on the co-occurrence because it wasn’t even considered “legitimate” until 2013. Research moves at a slow pace, which means we have to wait even longer to have the knowledge we need to better understand and work with our brains.
Neurodivergents are taking matters into their own hands. They’re bypassing the unhelpful constraints of the DSM-5 and naming their lived experiences and observations. They’re running surveys and groups. They’re doing everything they can to bridge the gap. It’s why I write essays like this one and present at educational conferences and classes. We’ll get there eventually, but it will take time.
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