The 15 ½ Minutes that Led to My Autism Diagnosis...
Read now (7 mins) | ...And SAVED MY LIFE
March 19, 2023
Once you are diagnosed as neurodivergent, you start making sense of your life…backward.
You start to replay your experiences – frankly, usually the bad ones – in the context of your diagnosis. There is a joy in understanding this, but it’s coupled with a deep grief for what has been lost.
I know it’s not just me that has experienced this Joy and Grief dance because I’ve talked to a lot of late-in-life diagnosed autistic and ADHD people and read a lot of memoirs and reflection pieces and it has a similar unveiling in all of the retellings.
As a neurodivergent person, there are so many things that happened in your life that you blamed yourself for not getting right.
When you look back at that moment now, knowing your diagnosis, you can make sense of it in a different way and forgive yourself for not knowing better and not having the right tools, supports, or accommodations to have done anything else. This part feels GREAT! It’s like getting a lot of “You are not the asshole” feedback on one of those “Am I the Asshole?” Reddit threads.
But then the grief comes in like a tidal wave.
So many friendships destroyed, jobs lost, health failures, tears cried. So many moments in my life I can’t get back.
“If only my mom knew….”
“If only my teachers knew…”
“If only my partner knew…”
And of course,
“If only I knew…”
You start to see how you could have played it differently. For autistic women, they start to see how they used fawning and people-pleasing to mask. I heard one woman explain she had been ever so slightly squinting for 30 years as part of her masking, which lead to all these neurological issues she was trying to undo.
Think of how you squint a little when you say “Huh?” —yeah that. She had been doing that for decades. Permanently. It was her face.
The celebrated British author Katherine May found out she was autistic and realized she needed to take a very very very long walk—a 630 mile walk to be exact—and then document it in her excellent book The Electricity of Every Living Thing to make sense of the vastness of the loss.
Most of us who were diagnosed late aren’t mad about it. I know in my case, even though it’s obvious now, those tools just weren’t there. No one was diagnosing girls like me with autism in the 1980s. I was diagnosed in late 2012.
In October 2012, I was on a flight to a life coaching event and I was listening to my favorite radio-show-cum-podcast This American Life - Episode 458. I’ve been a TAL fan since their famous “Poultry Slams” of the mid-90s back when the show aired at 11am Sunday mornings on WAMU and I’d listen on my way back from church and just drive around DC until the show was over.
When this segment came up, I was just as excited to listen to it as every other segment. Here’s how This American Life described it: Wife Lessons
Kristen Finch was a speech therapist who sometimes worked with Autistic kids. Kristin and her co-workers often joked that all their husbands had Asperger's since the “symptoms” overlap with stereotypically male personality traits. But then Kristen wondered—what if it was actually true for her husband David?
The Dave Finch took an online quiz to determine whether he had Aspergers, then wrote a book about this experience called The Journal of Best Practices. (15 1/2 minutes)
TAL was one of the first NPR shows to become a podcast, and I had downloaded some missed episodes from earlier in the year to listen to on a flight. Headphones in. Middle seat. Let the storytelling commence!
A few minutes into the episode, I started to feel a lot like Dave. Everything he said made sense. In the episode, Dave’s wife Kristen mentions a quiz she asked Dave to take. I rushed to the hotel to take the quiz. As soon as I saw the results, I knew.
It would be another 2 months before a psychologist made an official diagnosis, but I didn’t need a doctor to tell me.
Once I self-diagnosed, I played my whole life back and it all made sense. I drove alone in a rental car to Sedona the morning after I took that quiz and I called my only friend who I knew, knew about autism, Diane Hunter.
You know what she didn’t say? “You don’t look autistic,” or “I don’t believe in labels.” I’m still so grateful Diane was my first call.
I am glad I didn’t have to spend another 10 years not knowing. But to be honest, the joy/grief dance took me a decade to sort out.
On the 10-year anniversary of my diagnosis I decided to do a one-woman show. I wanted to show multiple scenarios before and after diagnosis. I wanted to show a few key scenes from my pre-identification life and then re-do the scenes, but this time, a fantasy version of what it could have looked like if I had known, and see the differences.
The goal or the point of the show, was to show the power of diagnosis and how if you know—when you know—things can be different. And I wanted to perform it for my 50th birthday, which is next week.
The more I tried to write the show, the more it felt self-indulgent. Sure, I’d do a show. It would be fun to write. 200 people would see it, and that would be that. It would be a lot of work and expense…and very little would get accomplished except my own personal catharsis.
So I asked myself how I could make this show into something that would actually help others process the simultaneous joy and grief of a late-in-life diagnosis like mine. And that is how The Autistic Culture Podcast was born.
Instead of a one-time show, I’d make it weekly, and give it time to build an audience. I’d make it about all of us—our culture—not just me (though my stories do get in there). And I would bring in an expert so it wasn’t just about me hearing myself talk, but an actual trained, licensed psychological practitioner who did this for a living who could share the spotlight and highlight the actual science behind things – because experts matter. (Enter my amazing co-host and now friend, Matt Lowry).
We launched the podcast in November, and this week we just had our 10,000th download! This is the best 50th birthday gift ever. Thanks to everyone who has listened in! My stories from the one-woman show idea have made it onto the podcast along with so much more. In it, you will hear me share the “making sense” journey of 10 years of being a late-diagnosed autistic woman:
“Oh! That’s why people think I have a secret agenda.”
“Oh! That’s why libraries make me cry with joy.”
“Oh! That’s why I always got fired from jobs.”
“Oh! This is why I always felt like the ugly duckling.”
“Oh! That’s why I love Crowded House so much!”
“Oh! This is why doctors appointments have always been so hard for me.”
“Oh! This is why I’m so passionate about social justice.”
“Oh, that’s why I hated taking showers!”
I don’t make this podcast to hear myself talk. I do it because I know unmasking requires recognition, hope, time, and tools. We share all of that on the podcast. If you know you are autistic, or think you might be, or love someone who is, what I hope you get from the show is:
The recognition of yourself in the people we profile and the stories we tell.
The hope that comes from knowing you are part of a vibrant culture with a powerful history—not someone with a disease to be fixed.
The time to process the loss and grief of being discriminated against for differences in your brain that you had no control over.
And the tools to navigate a life of living in the neurominority. Tools like spending more time with Autistic people, creating guilt-free time and space for your special interests, and designing ways to manage your sensory sensitivities.
If you haven’t listened yet, check it out here: The Autistic Culture Podcast. And if you’ve already listened and liked it, please help us reach more people in our community by rating us and leaving a review in your podcast app (it really makes a difference in those search engines!).
Our current episode, Episode 21: Dino Nuggets are Autistic, is about Autistic Food culture.
Food has always been a drama for me. I was always called a “picky” eater. I have been mostly eating the same SAFE foods like buttered noodles and cheese sandwiches my whole life. My current SAME foods (for the last 7 years) have been Mariani dried apricots and BelGioioso shaved parmesan cheese. Here’s the Joy-Grief dance on that. BLAND foods, SAFE foods and SAME foods are a part of autistic culture.
“Oh! That why I eat the same food over and over.”
“Wait! I wasn’t a ‘picky eater’ I was just autistic!”
Cue the feels:
Anger at others: OMG the number of times I was forced to eat things I hated!!
Anger at myself: So many years of feeling guilty or trying to explain being a supertaster!!
Shame: Ugh, I wasted so much time hating myself for my kid’s-menu-palette.
Sadness: I wish I could go back and reparent that embarrassed part of myself
Freedom: Well, I guess at least I can do that now and I don’t have to keep recreating this ableist nonsense.
Joy: I LOVE MY SAFE FOODS!!! I LOVE MY SAME FOODS!!! HAPPY DANCE!
And this is what a late-in-life diagnosis is like on the regular.
10 years of that dance for me and I’m so happy to be able to focus so much more now on the joy rather than the shame, sadness, regret and loss. But it’s a journey. There is a lot to process. If you need some support in your Joy-Grief dance with autism, come check out the show. I’m always looking for dance partners.
What’s been part of your Joy-Grief dance? What have been some of your ah-ha moments as a late-identified autistic? Tell me about it in the comments!
*Background note: Most people only have a vague (often, highly stereotyped) version of autism in their minds and believe that autistic children need (traumatic) ABA therapy to "overcome" their disability and appear "normal." After receiving an autism diagnosis in her thirties, Dr. Angela Lauria realized that she too had been mostly unaware of what it means to be Autistic. Like so many people, she started her journey by first gathering information and resources from the omnipresent (and problematic) Autism Speaks, but eventually moved away from the 'autism community' in favor of the 'Autistic community,' where she found kinship with other Autistic individuals and learned to let go of pathologizing language like 'autism spectrum disorder' and 'Asperger's Syndrome.' This autism blog (and her autism podcast, "The Autistic Culture Podcast") is meant to share her lived-experience insights to support others on a similar journey of diagnosis, understanding, and community. Embrace Autism--differences are not deficits.