When People Didn’t Believe My Autism Diagnosis at the Age of 63


My autism diagnosis is still fairly new. This doesn’t mean that I’m new at being autistic. It just means I now have a label and a framework for understanding why I move through life the way I do.

There have been lots of ups and downs over the past six months since my final meeting with the psychologist. The best moments involved learning why I’m different from others in ways that, in the past, left me feeling hurt and alone. Just knowing it’s not my fault has been a source of tremendous healing for me. I know that many people fear finding out they might be autistic. I’m only sorry it took me so long.

Some things have not gone so well. Telling friends and family is at the top of this list. Not the telling part. This has been pretty easy for me, perhaps too easy at times. What’s been surprisingly difficult has been convincing people it’s true when I’ve told them I’m autistic.

That’s not true. You can’t be.

Oh, my neighbor has an autistic son and you’re not at all like him.

Who told you that? Did you self-diagnose?

I never would have guessed.

I get this. Most people don’t understand autism affects people in a broad range of ways or what passes for social awkwardness or shyness might be something else entirely. Mention autism to them and they think of a child or adult dealing with very significant challenges. They don’t expect to see it in the people around them, and as a result, they don’t see it at all.

It’s no surprise they also don’t understand how hard we work to fit in, to find and keep jobs, to make friends, to navigate all the little tasks that make up a “normal” day, to not feel depressed or rejected when these things are difficult, exhausting or simply impossible.

I learned early on what it means to be different. Kids don’t invite you to play. Bullies single you out. Your one friend at lunchtime is the book you brought from home. Parents and adults withhold approval and, at times, love when you don’t measure up to their expectations or embarrass them.  

I did my best to avoid others physically and emotionally when I was growing up. Stayed home when possible. Ran away when it hurt. Was silent and invisible.

By the time I got to college, I was quiet, solitary and depressed, constantly at risk of a meltdown. Everything was a challenge for me. I just couldn’t think or be like the people around me.

My work life after college was more of the same. Very high-performance skills, very poor interpersonal ones. Every day felt like I was teetering on the edge of a cliff as I fought to mask over my differences with long work hours and determined over achievement.

I never felt I could show my real self to anyone. Instead, I faked normal every waking hour with everyone I knew. It became so habitual that the real me quite literally ended up hiding in plain sight. Small wonder it was so hard for others to believe I’m autistic. They had no idea who I really was.

So here I am, 63 years old, trying to introduce myself to friends and family for the first time. I’ve been forward about sharing my diagnosis when I thought it was the key to having a close, honest relationship with someone.

Since my trying to explain anything verbally is a one-way ticket to an endless, disconnected monologue, I’ve written a few follow-up emails to friends who didn’t accept or believe. This actually gave me the chance to focus on how I’m different, on what it means from a practical standpoint and then to put it into words. It may have taken a couple of back and forth emails, but almost everyone has ended up saying thanks for sharing this, I get it now.

Out of all the people I’ve told, only one has made a point of refusing to believe. It’s a bridge he won’t cross and, on a very basic level, feels too much to me like the rejection I experienced as a child. Friendship, like love, should be built on acceptance, not on expectations.

My relationships with other friends and family are works in progress. Yes, they now get it and may be on the lookout for some of the ways in which my being autistic expresses itself. I’m also much more open about being me around them, even when my proverbial kettle is on the boil and I just can’t resist rocking up and down on the balls of my feet. It’s taken me a while, but I finally understand that the only way to truly feel accepted is to know that people are seeing the real me.

C.S. Lewis wrote that the gates of hell are locked on the inside. This was true my whole life before I was diagnosed. It’s not true anymore.

Follow this journey on Lost Words.

Lead photo source: Thinkstock Images

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