I’m 63 years old. I’ve spent a lifetime being alone and different, and not understanding why.
I had hoped my autism diagnosis earlier this year would change my life. It didn’t — at least not in the way I expected. No surprise that answers aren’t always solutions.
The good news is I now understand my head-banging and unmanageable behavior as a child, the absence of friends and rejection by adults, the isolation, the missing words and social skills, the depression and anxiety, the fundamental disconnect with the world I live in. It’s no longer my fault. I grieve for the child I was but have forgiven myself for being what always seemed so “broken.” I’ve also learned to forgive the people who walked away when I was young.
My challenges are more understandable now. Those that come with an almost 40-point IQ gap are well-known fellow travelers. I can and will get lost driving places I’ve been to countless times. Directions, maps, locations… none of it makes any sense. Shapes and patterns, unlike numbers, elude me. After all these years, it’s become amusing.
My autism is a new acquaintance. It took two months to schedule an evaluation with a psychologist last winter. Another month passed before I got the diagnosis. I was so overwhelmed during the final appointment that I could only stare, literally at a complete loss for words. Everything changed at that moment… except for me, the one thing I desperately wanted “fixed.”
I was at an autism fundraiser last week. One of the speakers was a parent who had raised thousands of dollars over the years for a “cure.” He was most passionate when he spoke about how the world had completely changed for him when he learned his child was autistic. All I could think was that the world hadn’t changed for his son any more than it had for me.
I still don’t remember things I need to do without a written list carried in my hand, taped to my phone, or sticking out of my shirt pocket. I still forget bills and other papers if someone moves the pile I keep them in at the breakfast table. I’m still speechless with more than one person because it takes me too long to think of something to say. My meager collection of conversation starters still runs out too quickly. I still need to get lost in a book or simply lie down and shut out the world to calm down. I still struggle to make friends.
What has changed is that I understand my autism as a different way of being, not a deficit, disorder or disease in search of a cure.
Just a different way of experiencing the world. Yes, I have some challenges, but I’ve always had them. I also have gifts that enrich my life in ways I never really appreciated before. Logic, focus, determination and an abiding calmness. A love of numbers and words that made up for my workplace foibles and helped me have a career. I may have no words to describe my feelings or emotions or the compassion I can feel, but they surge under the surface, are genuine and can overwhelm me when least expected. I love deeply, even if it’s reserved and not obvious at times.
My son asked why I would bother to be diagnosed at such a late age. It’s taken six months for me to answer his question. My diagnosis has completely transformed my life, not by fixing it as I hoped, but by explaining it. Understanding has helped me begin to let go of the pain and disappointment from childhood, to have reasonable expectations of myself and the people around me, and to learn to like myself just the way I am. It also has helped me find a community of people like myself who are reaching out for friendship, acceptance and affirmation. I’m not alone.
As I said to my wife not long ago, I’m seriously at risk of being happy for the first time in my life. Not a bad diagnosis at any age.
Follow this journey on Lost Words.
Image via Thinkstock.