Why Bother?

John Long

I’m 65 years old.  I’ve spent most of my life feeling alone and different, and not understanding why.

I had hoped my autism diagnosis two years ago would change everything for the better.  It didn’t, at least not in the way I expected. No surprise that answers aren’t always solutions.

The good news is that 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, anxiety and fundamental disconnect with the world I live in.  It’s no longer my fault. I still 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 diagnosis of autism is still a relatively new acquaintance.  It took two months to schedule an evaluation with a psychologist in early 2016.  Another month passed before I was given 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 a fundraiser later that year for our local Autism Speaks walk.  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 in order to calm down. I still struggle to make friends.

What has changed is that I understand my autism as a distinctly different way of being, not a deficit, disorder or disease in search of a cure.  Just an alternative 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 miscues and helped me build a successful 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.

Has the diagnosis improved my self esteem?  No. Not at all. I would never willingly pick up the phone and call someone I know to talk, ask them if they’d like to get together for coffee, dinner or a movie.  I just can’t imagine them wanting to or what I’d have to say that would interest them. Perhaps this would be different if I wasn’t this age and was starting over as a young person today when there’s more support and understanding for people with autism.  I hope so.

However, I will tell you that I’ve never let this lack of self esteem hold me back.  Not from being a supportive, loving father. Not from putting one foot in front of the other during my work life and always doing the best I could.  And now, as a retiree, I refuse to let it keep me from trying…in my small way…to make a difference for others less lucky than I’ve been. Just because life isn’t perfect or easy, there’s no reason it can’t be very meaningful.  Knowing your strengths and abilities, accepting yourself just as you are and finding purpose in life can more than fill a lot of otherwise empty spaces.

My older son asked why I would bother to be diagnosed at such a late age.  It took me six months to answer his question. My diagnosis completely transformed my life, not by fixing it as I hoped, but by explaining it. Understanding helped me begin to let go of the pain and disappointment from childhood, to have reasonable expectations of myself and of the people around me, and to learn to accept myself just the way I am.  It also helped me find a community of people like me who are reaching out for friendship, acceptance and affirmation. I’m not alone.

As I said to my wife, I’m seriously at risk of being happy for the first time in my life.  Not a bad diagnosis at any age.