Coming to Terms with Late Diagnosed Autism/ADHD Grief
Since learning that I am autistic and have ADHD earlier this year, I have heard a lot about late diagnosed Autism/ADHD grief, but I did not understand the concept initially.
When I learned that I was autistic at forty-seven, I was not sad about the diagnosis. I was instead relieved to finally have answers to questions that had tormented me for decades.
I could finally stop wondering IF I had ADHD and autism, as my wife had long suspected. When I paid an obscene amount of money for an extensive psychological and neurological test, I was able to replace a suspicion that I was neuro-divergent with the knowledge that I am neuro-divergent and have been all my life.
It wasn’t until I saw a Reel about late-diagnosed ADHD grief that I began to understand the concept. Incidentally, my reels always used to be of sexy women doing TikTok dances. Now, it’s exclusively people discussing their experiences with ADHD/Autism. That feels like a natural, organic, even inevitable evolution.
Watching this reel, I had a revelation. Late-diagnosed ADH/Autism grief isn’t about the diagnosis or the condition, necessarily. Instead, late-diagnosed ADHD/Autism grief is around everything that came before the diagnosis.
I’m not grieving my current life as the autistic/ADHD father of two boys with autism/ADHD. That life is hard but full of joy, meaning, and satisfaction.
What I’m grieving is everything that didn’t happen because I did not learn conclusively that I was autistic and had ADHD until I was forty-seven years old and the father of two boys on the spectrum.
I’m mourning the childhood that I did not have because I did not realize that I was autistic and had ADHD until I was deep into middle age. I mourn the past that could have been if I had been diagnosed at the same age my boys were diagnosed, and I could have understood myself and the enduring mystery of my brain so much better.
I’m mourning being born at the wrong time. I’m grieving the misfortune of being born in 1976 and coming of age at a time when autism was a weird condition the public knew almost exclusively from Dustin Hoffman’s twitchy performance in Rain Man rather than as a major force in American life and my life in particular.
I mourn the sense of community and solidarity that I might have felt with other people like me when I was a child, adolescent, and young adult. I mourn the fact that I masked just well enough to never receive the help and support that I desperately needed.
I mourn having spent so much time over-thinking my brain during my adolescence in a group home for emotionally disturbed adolescents, my month in a mental hospital, or countless hours of therapy when I talked and talked and talked about my frazzled life and broken brain without anyone realizing that I was neuro-divergent.
I grieve a nonexistent professional life in which my colleagues might have understood me better and been able to accommodate my needs instead of just thinking that I was weird, awkward, and scattered.
I did not realize it at first, but I definitely have late-diagnosed ADHD/Autism grief. I cannot do anything to undo a past where I did not know that I was autistic or had ADHD. But I can help ensure that my sons don’t have to go through what I did.
I can help my boys embrace everything that makes them different, special, and unique. I can help my boys love their autistic brains and their autistic bodies.
I cannot change the past, but I have control over the present and future as much as anyone can in this wild, weird, crazy-making, and unfathomable world.
Nathan needs teeth that work, and his dental plan doesn't cover them, so he started a GoFundMe at https://www.gofundme.com/f/support-nathans-journey-to-dental-implants. Give if you can!
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