When I was diagnosed ASD level 1 at age 42 and realized what the staggering number of undiagnosed autistic women my age* must be, my first thought was of all the untapped talent that was out there in the world like misplaced dynamite. There was world-changing potential just waiting to be activated.
Johanna R. Murphy, MFA
Now, I’m 52, I work for an autism and neurodiversity services non-profit, and am the happiest I’ve ever been. I still struggle with executive function, but it’s no longer a mystery. I still think about all of the autistic women my age and wonder: are they feeling any better? If those women were like me, they were held back by unresolved trauma, contorted thinking, and the energy-hemorrhage of masking – which arose from growing up undiagnosed autistic in a world organized for neurotypical people.
For me, learning that I’d had a different operating system all along finally unlocked the potential of the twenty years of recovery and therapy work that I’d done. I’ve still got plenty to do, but I’d like to share some of the things I did, post diagnosis, to reclaim a more authentic self, and heal a lot of the trauma that kept me from enjoying life and managing my emotions.
I realized that I was stuck; the injustices and humiliations of my childhood still ruled my day-to-day reactions. My inner self was still waiting for a trusted adult to come and validate my experience and correct the injustice. It was time for me to become my own trusted adult and validate my own experiences.
Getting Unstuck
I grieved for my childhood self and worked on letting go of the pain and anger that held me back by developing a perspective I could live with: It was the 70s and 80s and no one knew better. That may not be an excuse, but it is a reason. I now have life experience teaching and raising kids and I know it is very hard, even with the best information, best resources, and best intentions.
I repaired my grief and perspective simultaneously. I was in an MFA Program for nonfiction narrative when I was diagnosed autistic. I had to produce a manuscript – a memoir- to complete the degree. It took a few years. I wrote until it truly was the past, instead of an ever-present shadow over my life. I got unstuck.
Forget everything you learned about blending in, forget that you aren’t allowed to like all the weird things you liked as a kid. Remember the things from childhood that gave you deep, uncomplicated joy. After I was diagnosed, I asked myself to remember the happiest I had ever been as a child. For me it meant reconstructing my childhood 45s collection, buying a bass, and learning all the basslines that brought me such joy. That joy was permission to repair my relationship with music and my natural instincts about how I ought to live.
Reappraise your notions of what you can and can’t do. I asked myself what sort of support I had needed for my hidden disabilities when I was young. Could I get that support now? For me, the element that most profoundly affected my soul was dyscalculia – specifically the element of it that impacts reading musical notation. No amount of focus helped. What I could read one day was a jumble the next. This was unspeakably shameful for me, and it completely ruled out music school because at that time a sight-reading audition was the application process.
I realized that the way I had learned to play guitar – in reverse order – using brute repetition that built muscle memory which then led to understanding patterns – intervals and scales – might work for understanding time and meter. I started taking drum lessons, and it worked. I learned through using my body.
Develop a regular creative practice around your joy – journaling, video blogging, painting, cooking, whittling- something that feeds your natural energy. Something that keeps you limber and creative and dwelling in the place where your instincts live. It’s vital to reclaim our real instincts.
Reclaiming my instincts required me to be vulnerable. I had to do real unmasking. I had to share the humiliating secret that I could not read music. I had to expose parts of myself that I’d walled off and stop hiding the parts of me that needed help.
I learned to unmask and say “it’s ok if I’m not any good, this is something I want to do” instead of only allowing the “presentable” out in the world. I founded my imaginary bar band, which is full of other middle-aged women who like to rock, it’s called “The Lunch Mothers of the Apocalypse.” Because I can now count, I can multitrack and build entire back-up band recordings. I’ve become a better guitarist and better musician than I’ve ever expected to be, and I am having the most fun in my whole life and that energy flows into the rest of my life. I retraced my steps and corrected my counterproductive thinking. I went from mediocre singer-songwriter to actually-bad imaginary bar band – but for me it’s a triumph and a crucial example of how our thinking can become distorted over the years, how we can become alienated from ourselves and trapped in counter-productive masking. Being unable to understand why people did what they did, or how people got where they got-because for me it was all masking – because there were so many things girls weren’t “allowed” to do, I made a lot of concessions in order to be “allowed” to do something nearby what I wanted to do. I spent a considerable amount of time, energy and money being a solo singer-songwriter when really, I just wanted to be part of a group but didn’t know how to count or be vulnerable around other musicians and I organized my life around hiding those things.
Stop doing things you don’t want to do that you feel socially obligated to do if you can help it. I know we all have to work, but we don’t have to mask.
Learn and avoid your sensory drains. You will never develop a tolerance through exposure. Protect yourself and simply avoid sensory drains.
Include a wellness routine in your life – we forget we have bodies: schedule water breaks, food breaks, and stretch and exercise breaks throughout the day. Get lots of sleep. I can’t believe how many years I struggled with perseveration, mood, and feeling just because I needed a sandwich and some exercise. I am not exaggerating.
I’m sharing this process of reclaiming my authentic energy in hopes that other late-diagnosed women might see something that they find useful and maybe feel a little better. I’m no expert, however, the result of all of this is that, unlike all of the years I spent in “survival mode,” I’ve regained what I always wanted and needed in order to be completely myself. I enjoy life. I want the same for you.
*I want to acknowledge that there are plenty of dreamy, gentle boys from my generation that didn’t meet the diagnostic criteria either and suffered in their own way.
Johanna R. Murphy, MFA, works as Director of Development for Evolve Coaching. For more information, call (412) 744-9017 or visit www.evolve-coaching.org.
I have a very close personal friend who is on the spectrum.
We have been close friends 24 years. This is so new for me (and her who is 63)
Any suggestions where to begin with understanding and support for both of us?
Thank You –
Bev