Late Diagnosis

What is late diagnosis? Late diagnosis occurs when an Autistic/AudHD/ADHD person is identified after the age of 18. Some people (women in particular) are taught to mask Neurodivergent traits throughout their lives, making diagnosis more challenging. Additionally, many of the measures currently used to diagnose Autistic/AudHD/ADHD people were based on older models of function that looked only at the Neurodivergent traits of white boys and were based on observation, rather than the internal life of Autistic individuals.

I can remember my mother saying to me with absolute frustration “Stop sucking your hair, everyone will see how weird you are, stop it, stop it, stop it.” Now, she meant well. She wanted me to be happy, well adjusted and “normal”. She wanted people to see the child she loved not the kid sucking her hair and running her hands along buildings to feel the bricks. She didn’t know any different. I knew something was wrong, but I came to believe that maybe all people felt weird and a little broken. Over time, I didn’t realize I was masking any more. This was how all people were, uncomfortable in their clothes, too hot, too cold, food wasn’t right, everyone else always felt like they were putting their foot in their mouth? Right? And then my children (I am speaking here with their permission), one after another were diagnosed with Autism, and started saying things like, “Mom that thing you do… it’s the Autism.”

When assigned female at birth people are conditioned over years and decades to hide their outward Neurodivergent traits, it can make it very difficult to get a diagnosis. No one sees the turmoil inside the person, instead they see someone who sometimes says something slightly off, or who is maybe a little weird, but the traits we think of as Neurodivergent become less visible and internalized over time, a process which can be defined as masking. I'll address in another blog the significant impacts of masking over time.

You might now be asking yourself why it matters. If, over time, some Neurodivergnt people learn to appear Allistic (Neurotypical), why does diagnosis matter? Because it’s still an issue. Diagnosis allows adults to gain access to accommodation in workplaces and schools, and it allows us to accommodate ourselves. Diagnosis allows us to “look it up”, studies, blogs, YouTube, and Instagram have many Neurodivergent people talking about their own experiences, decreasing isolation and increasing understanding.

My work with Autistic/AudHD/ADHD people can involve helping people sort out the complex emotions that can occur after diagnosis. Frustration, anger, grief (sometimes profound), joy and relief and so much more can accompany a late diagnosis. Sometimes we just need a bit of help sorting out our emotions at the end of what has sometimes been a painful journey.

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