Pink dogwood branches against the evening sky. Jennifer Willis, 2021.

the revelation of autism spectrum disorder at midlife

I’ve been pretty open about my discovery early last year that I have autism. At least, I would have been more open about this if I’d been blogging more. I’ve gotten out of practice in this space, and as a result become overly anxious when there’s something I want to say. Too many times, I end up keeping my thoughts to myself instead.

This means I’m a bit rusty, and I hope you’ll bear with me.

I’m 51 years old. I didn’t have any clue until January 2020 that I’ve been on the spectrum all my life. Let me tell you right now, that’s kind of like putting your midlife crisis on steroids. I am still learning and feeling my way into this—into, because there is no through here. To say that this revelation changes everything is a gross understatement. There’s been much validation and even joy that has come out of this, but also a deep sense of loss, and it’s all been happening while my foundation is roiled by a roughly magnitude 7.2 earthquake.

Late last August, I joined an online support group for adult women with autism, sponsored by the Aspergers/Autism Network (AANE) based in Boston. If not for the pandemic forcing all programming into virtual spaces, I wouldn’t have been eligible for this group, and I wouldn’t have met the extraordinary women in the US, Canada, and the UK who have been coming together on a weekly basis to share our triumphs and struggles.

One of the people in our group was someone who was interning with AANE as part of a graduate program, and this week was her last time joining us. As she is set to graduate and head into the world to work with people like us, she asked us in advance to each share with her one thing we wanted her to know about our experience with autism. I spent a week thinking about this and wrote down what I wanted to say—because I’m better in writing, because I often get tongue-tied when speaking (especially on an important topic or when I’m emotional or nervous), and because I also wanted something I could easily copy and paste into the group chat later, if requested. Our group lives in the chat window.

I’m sharing this here because the support group cheered when I finished, and because a few days later, my therapist said that she “got chills” at these words. So, here goes . . .

I’d like XXX to understand how life-changing an autism diagnosis can be in middle age, after living for 50 years not understanding why you couldn’t just be, feel, think, behave, and achieve like everyone else. Fifty years of feeling defective and like you’re letting everyone else and yourself down. Even when autism is obvious in hindsight, there can be a lot of shame, hurt, and fear that builds up in those five decades. And then when the autism diagnosis comes, it can be both a huge relief and a deeply rattling experience, because now you are re-processing (and both mourning and re-appreciating) the first half of your life while simultaneously trying to step into the second half of life with confidence and purpose. The gravity of such a diagnosis, and coming to a new and unexpected perspective of yourself, cannot be overemphasized.

Posted in thoughts from the spiral.

One Comment

  1. There are a million books, and maybe you’d get more from memoir by a woman, but FWIW, I found Tim Page’s, Parallel Play: Growing Up with Undiagnosed Asperger’s, hugely moving. Also in case you havent read it, I’d recommend steve silberman’s NeuroTribes as excellent for context and perspective

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