This Changes Everything: Autistic Self-Discovery As an Adult Woman (Through Reading)

Written By Carole Ann Penney, Founder

“I am out with lanterns looking for myself.” - Emily Dickinson

This year, in my 38th trip around the sun, I learned something major about myself: I am Autistic.

This realization didn’t come all at once, through one precipitous event. It wasn’t like a bolt of lightning.

Instead, I waded into my Autistic identity gradually over the past three years. It was like sticking one toe into the water and slowly immersing myself, inch by inch, pausing at each stage to adjust to the temperature before finally dunking my head under the surface.

Being here in the water is invigorating, refreshing, empowering, and challenging all at once. And I’m so glad I jumped in.

My submersion into this new identity that I've unknowingly inhabited (and masked) for my whole life was guided by reading the stories of other women—some memoir, some nonfiction, some fiction.

Now I'm writing my own story, in two parts: how I got here and what it means. And I’m pulling out some lessons learned that I hope will encourage you to unapologetically continue to explore who you are and create a life that works for you, whether or not you’re neurodivergent.

I should note that I am in the messy middle of this discovery process. I don't have it all figured out. There is so much more that I need to learn—both about Autism and about myself. But I'm sharing this point in the imperfect process here.



How I Realized I’m Autistic In My Late 30’s

Dipping a toe in: The Highly Sensitive Person: How to Thrive When the World Overwhelms You by Elaine Aron (nonfiction)

I'm 35, sitting on the screened-in porch of my childhood home on a crisp, quiet night in the Vermont fall. I'm here with two friends for a weekend business retreat, and we're savoring slices of fresh apple pie and chatting about what's happening in our work.

I try to put something into words that I've been struggling with for some time:

"There’s a point in every day when my computer gets really bogged down because I have so many tabs open, and I have to press this button to ‘Free up RAM’ in order to get it moving again. That's how overloaded my brain feels—but all the time. And I can’t figure out what button to press to clear it up."

My friend Theresa gently asks if I'd ever heard of the book The Highly Sensitive Person by Elaine Aron. I’ve known about it for years, but I've intentionally avoided learning more. On some deep level, I know it might cut too close to a truth that I haven't been ready to see in myself. Being a "highly sensitive person" sounds too precious, too fragile, too needy. All the things I've spent my life trying not to be.

I remember arguing with my mom about my clothing all the time when I was a kid—I didn't want to wear jeans or other stiff fabrics that were so popular in the 90's. Every sweater seemed to be too scratchy. Corduroys were too lumpy. I hated flip-flops and tights because they rubbed up against my toes.

Mom would roll her eyes at me, like I was being unreasonable and intentionally difficult. "You know," she would tell me, "just because it's not your favorite outfit doesn't mean you can't wear it." 

I know she was trying to protect me in certain ways: the fact that I opted to wear the same green plaid flannel button-down and navy leggings that looked like jeans in disguise (way before their time and definitely not cool) almost daily in sixth grade did not win me popularity. And our family had limited resources, so money spent on clothes that I wouldn't wear was understandably frustrating for her. But what I took away was this: Stop being difficult, Carole Ann. Stop being so needy.

The next day of our Vermont business retreat, Theresa and I amble through the town’s fall festival and happen upon the library book sale. I rifle through boxes of children’s books until she comes to me holding The Highly Sensitive Person: "It's a sign," she says. "It's time for you to read it." I hand over $1 to the librarian and take it home.

Reading the book, I learn that “sensitivity” isn't about having fragile feelings at all—it's sensory. The way that my system takes in and processes sensory information (sights, sounds, feelings, tastes, smells) is different. It's deeper, more intense, slower. My sensory receptors are wide open, taking in more information than the average person.

I often say to my husband: "I feel like a person who walks around this world with my nerve endings on the outside of my body." Now I understand why.

Aron carefully paints being a Highly Sensitive Person (HSP for short) as a "positive trait," a superpower that can be mastered and unleashed for good—distinguishing it from more serious disorders or dysfunctions. HSP leads to deep empathy, being powerfully present and tuned into others—all things that make me great at my chosen profession of coaching.

Still, I wrestle with the label of HSP. It feels too delicate and not real enough for me. I'm afraid that my family will brush off the label as too “soft.”

I dive deeper into research and find alternative language for the same label: Sensory Processing Sensitivity. I try it on. This fits better for me. More medical and neurological and real, less feelings-based. I discuss it with my doctor and therapist. I integrate it into my understanding of myself: My system processes things more deeply than others. 

It's just a toe dipped in, but it's shifting so much.


Dunking my whole foot in: Always Only You by Chloe Liese (fiction)

It's a year later. I'm 36 and on another retreat, this time solo at a hotel on the tip of Cape Cod, overlooking the ferry boats coming and going, coming and going, all weekend long. I suppose these times away are when I do my best thinking and integrating. 

Being alone, for me, is essential. It allows me to quiet the constant thrum of stimulation and reset, calm, return to baseline. It settles my nervous system. It recharges me and allows creativity to flow.

With no children around, there's no one's needs to meet except for my own. I don't like to check in with my family when I'm away because it pulls me back in and bursts the purity of my solitary bubble. There is so much guilt in going away like this. It is hard to come home from these trips—I feel relieved to assuage my guilt from burdening the family with my absence, but I wish I could stay until I feel whole again and ready to return. That would take so many days.

I'm lounging on my soft white bed with my latest contemporary romance novel—I've been on a tear to consume the full genre since the pandemic began. (There's something about knowing exactly how the story will end that gives me comfort and certainty in an uncertain world.) 

This book, Always Only You by Chloe Liese, is the second in a series of seven about the Bergman family and their various love interests. Liese is a neurodivergent author who features protagonists with disabilities including anxiety, Autism, rheumatoid arthritis, intestinal disorders, and amputated limbs. (At first, when I read about this family and all of their medical conditions, I was overwhelmed. Everybody's got weird stuff going on! But what I love most about Liese’s world is how she normalizes these conditions. Because in real life, everybody's got weird stuff going on! That's not weird. It's the most normal thing there can be.)

This particular love story follows Frankie, an Autistic woman in her late 20's who works as a social media manager for a professional hockey team and the team captain, Ren. I recognize myself in Frankie and her experiences in the world. When Ren's teenage sister, Ziggy, is diagnosed with Autism, Frankie offers some questions and perspective. Ren shares that Ziggy's treatment to date has mostly consisted of talk therapy to address her anxiety and depression. Frankie points out: Ziggy’s anxiety and depression are symptoms that result from living with Autism in a neurotypical world, not from Autism itself. Things will really shift, Frankie explains, when Ziggy gets help from an occupational therapist who can help her create a sensory diet.

I whip out my laptop and google "sensory diet." Everything that I read is a resource meant for young children, so I translate it all in my head for adult needs: A sensory diet (I don’t love this label…I prefer “sensory profile”) is an occupational therapy tool that helps you to understand your own unique sensory needs and make adjustments to either stimulate or calm six main sensory systems: sound/auditory, touch/tactile, sight/visual, smell/olfactory, taste/oral, proprioceptive (sense of where your body is in space). That last one is totally new to me, and there are three more if you want to get really into depth, but this list will suffice for me.

I learn that understanding my own system and what I can do when I feel either under- or overstimulated is essential to my self-regulation. I’ve been treated and medicated for anxiety for the past seven years. Could it be that my anxiety is not the core problem at all, but rather overstimulation?

I sketch out a table of my own sensory profile and needs in my sketchbook. It doesn't require deep reflection or testing—at this point, I know the feelings I've been living with. Now I have a way to acknowledge and understand them. 

This tool feels really useful and practical for me. I start to wonder: Does that mean that I'm Autistic?


Sliding my legs into the water: What Works: A Comprehensive Framework to Change the Way We Approach Goal-Setting by Tara McMullin

I’m 37 now, kicking off the new year by opening a delivery box that I’ve been waiting for: a business book that I pre-ordered from an entrepreneurial author I love following.

On the surface, the book is about how to set better goals. That’s what I thought I would be learning here. But woven throughout the pages is the author's story of her own Autistic realization at age 38.

McMullin outlines American culture’s obsession with progress and achievement, and shares a framework for approaching goals in a way that is more loyal to ourselves than the greater systems that capitalism is built upon. She reflects on how being Autistic likely exacerbated her experience of seeking validation through accomplishment. 

Some details from her life—about learning early how to be a standout student, skipping a grade for social reasons, and designing a form of work for herself outside of the traditional office—parallel my own path. 

As I underline passages and make stars in the margins, I take in the similarities and wonder if they mean something about who I am. I think they might. 

The book leads me to actually map out how I’ve habitually been overworking and overextending myself. And I see now that it is not sustainable. It will inevitably, unavoidably lead to burnout. I’m understanding my capacity in new ways.

I’m rewriting beliefs that I’ve been carrying around for my whole life—beliefs that feel like capital “T” Truths, but are not. I’m changing my approach to align with my system and the person I am becoming versus the person that I’ve felt I had to be. It feels more natural and completely unnatural all at once. 

“I finally discovered the framework that makes sense of my whole experience of brokenness and not belonging. And while this framework does nothing to fix those feelings on its own, it does give me a much healthier way of processing my difference as well as a sustainable way to understand better who I am and how I want to grow. I don’t want to change who I am (though I’d be glad to know her better), but I do want to grow as a human—and as a leader, wife, mom, and friend. I want to practice different ways to engage with the world and make sense of what happens around me. I want to become more ‘me’ and, maybe for the first time, discover what that truly means.” - Tara McMullin, What Works

I DM Tara to ask about her discovery, and she gives me a reading list that includes her own recounting of her diagnosis, Autistic Awakening, as well as a memoir by Katherine May that was central to Tara’s process. I immediately download it onto my Kindle from the library. 

I am off on a quest now. The pace is accelerating. 


Down to my waist: The Electricity of Every Living Thing: A Woman’s Walk in the Wild to Find Her Way Home by Katherine May (memoir)

Katherine May is a successful British author, a PhD, and a mom. This is the second book of hers that I’ve read. I didn’t know that she was Autistic until Tara pointed me towards her first title. 

I devour this book. May writes about driving in her car along England’s south coast at night, listening to a radio interview with an Autistic woman and suddenly realizing that the woman’s experience mirrored her own. She writes about telling her husband who, devastatingly, replies, “I know.” She feels like she’s the last to see this fundamental truth about herself. 

May recounts her struggles with two things I am all too familiar with: the traditional work environment and motherhood. 

  • What does it mean to be a professional who has specific sensory needs? 

  • How can I carve out a professional life when I simply don’t fit? 

  • How can I be a mother to an energetic and outgoing kid when I have limitations?

  • What does it look like to love my family fiercely and need space from them at the same time?

I’ve been carrying all of these questions in my own heart, though I didn’t have the words to articulate them.

I learn that there is a wave of adult women who are currently coming to understand their neurodivergence in new ways. Until recently, the definition of Autism and the tools used to diagnose it centered on children, mostly boys. Women and girls are more strongly pressured and rewarded to be “quiet, good girls,” and thus generally become practiced at swallowing down discomfort and hiding their differences.

I am understanding more and more that I am one of them.


Up to my shoulders: I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults by Cynthia Kim (nonfiction)

I wonder what it would mean to be formally diagnosed. Is that even possible? Would it be covered by my insurance? Do I need a formal diagnosis? 

As an entrepreneur, I don’t need to present my employer with a formal request for accommodations. As an adult, I don’t need an individualized education plan to move through a school system. But there is something about having a real piece of paper, signed by a doctor, for when I finally share my discovery with my dad and brother. My greatest fear is that they won’t believe me—that they’ll brush this off as me being dramatic, needy, and fragile once again. Being able to say that I have a formal diagnosis might help me feel stronger. But I want to know what that could mean.

In this skinny book, Cynthia Kim recounts in extensive detail her own experience with diagnostic testing. It is a lot. It is technical. It is a wonder. 

Testing is by and large built around children. Katherine May’s testing took place in a children’s classroom with tiny chairs, where a child’s speech therapist read her a book and asked if she understood the story. She replied “I’m halfway through a PhD in Narratology at the moment and I’m a writer. I understand stories really well, thanks very much.” 

I wonder if this is what I’m in for. I wonder what if the process has advanced in the past few years. I wonder: if I’ve become so good at hiding, how will they know that I’m Autistic? 

I’m more afraid that they’ll tell me I’m not than that they’ll tell me I am. Slowly, Autism has become an active source of my identity. It fits.


Diving under: Unmasking Autism: Discovering the New Faces of Neurodiversity by Devon Price (nonfiction)

It is telling that I read this book as though it is the most compelling, thrilling, and engrossing story I’ve ever read, when it is actually a dense and detailed nonfiction look at Autism today. To me, it is a riveting story—it’s my story. 

I underline nearly the entire book, scribbling notes in the margins and copying whole quotations into my sketchbook. I’m fully in, fully clear that this is true for me. 

I learn about masking—my constant efforts to hide or work around my Autistic traits in order to blend in. Both as a child and now, I pretend to be okay so that people will like me, but deep down I know I’m not. Be nice be sweet keep it together, I’ve learned. If I want people to like me, I can’t let them find out that I’m fragile. 

I’m so practiced at silencing my needs that I hardly notice them myself anymore. If someone hurts me, I don’t allow myself to get angry. If I’m uncomfortable, I push through. I smooth things over so that it’s easier for everyone around me (and, I now see, harder for me). 

“The root of masking isn’t biological—it’s social. Social expectations lead to a person’s disability being ignored. Masking is a way that people deal with their neurodivergence not being taken seriously.”
- Unmasking Autism

Now I’m allowing myself (sometimes forcing myself) to feel my limits, to acknowledge my needs and what pushing through costs me. I feel a deep sense of exhaustion that I've been doing this my whole life.

This new way of being is, in a way, harder. I was so good at pushing through. I was so good at tamping down my discomfort and not feeling. This is more painful, more awkward, more difficult to navigate because it is all so new. 

And I’m grappling with an unsettling question: Who am I under here? What parts of me are true to who I am, and what parts are me masking to get through? I’m parsing it all out, slowly. 

Another question: Will people think I'm too much? That’s the root of it all, why I learned to hide it in the first place. What happens when I reveal my highly complex and particular self? 

This new chapter is about learning to unmask. I’m working to acknowledge and assert my needs and desires, not to bend because it is more convenient for others. I am important. I am worthy. I need and deserve to be at my best and to live a full life.

I am making space for myself within me. Making space for the reality of me. I am finding my home inside of me.

I bring Price’s book with me to my annual doctor’s appointment. I can feel the hot, red splotches on my face and the tears forming in the corners of my eyes as I pull it out of my bag and clutch it to my chest. “I have something important to talk with you about. And I’m scared to share this with you. I’m scared that you won’t believe me.” She leans against the counter across the room as I shift awkwardly on the crinkly paper, recounting what I’ve learned about myself this year. 

When I show her the book, she tells me that she’s read it. I take a huge breath. This is great. I worried that I would be in the position of educating her about the new understandings about Autism and women. But she knows. She is supportive. She says it makes sense, given what she knows about me and especially given the experiences I had immediately following the birth of each of my children. She has at least one other patient who is a grown, successful woman, and now knows she is Autistic. 

She suggests a formal neuropsych evaluation—not to validate the diagnosis but to give me more detailed information about my system that we can act on together. She helps me confirm that the evaluation is, in fact, covered by my insurance. She refers me to a practice twenty minutes from my home, and I am able to schedule an appointment for their next opening—seven months from now. 

What It Means

What Autism Looks Like for Me

I don’t fit the picture I had in my head of what it means to be Autistic: a little boy, obsessed with trains or dinosaurs, who stands out as louder or more disruptive in a classroom. Our culture paints an overly simplistic and stigmatizing image of people with Autism as cold, odd, and dependent.  

I am an adult woman. I see myself as warm and empathetic. I love connecting with others. I can network and I enjoy it. I am “successful”—a valedictorian, first-generation college graduate from an Ivy League school, married, mother of two, and owner of my own business. 

I understand myself and Autism so differently now than I had before.

A saying that I've come to learn is: "If you've met one Autistic person, you've met one Autistic person." Autism looks very different for different people. That's why it's called the "Autism Spectrum"—not because some of us are "more" or "less" Autistic, but because it shows up in so many different ways. 

Instead of a spectrum, let's imagine Autism as a soup. Each of us has different ingredients in our unique soup. 

My soup is made up of: 

  • Sensory processing differences. My system is wide open to take in sensory inputs. I listen deeply and pick up on subtle body language and energy shifts in a room. This level of receptivity means that my brain needs more time to process everything. It also means that I’m uniquely suited to be a coach and facilitator.

  • Deep interests. Just like the little boy transfixed by trains, I have deep interests—they just look a little different. I’ve given myself permission to enjoy my special interests fully. Right now they include: contemporary romance novels, pie-baking, the music of Ben Gibbard, and fountain pens. It‘s so satisfying to get to know a thing all the way around. In my work, I get to share my deep interests in career and leadership development tools in support of others. 

  • Social navigation. When I'm with others, my brain is constantly going through the mental calculus of managing rules and interpersonal risks. I prefer 1:1 relationships to a crowd of people, because that’s just too overwhelming for me. Coaching is all about deep 1:1 and small group connections. Being an objective outsider is an advantage. It's the perfect place for me to be. 

Grappling with a diagnosis

An Autism diagnosis for a child is often seen as a blow—something wrong with a kid who will struggle for all their lives, something to be mourned.  

As an adult woman, finding out that I'm Autistic hasn't been a blow at all; it's been empowering. It's like I finally have a key that unlocks a door to understanding myself in a whole new way, a way I've always wanted to but couldn't figure out. 

I don't see Autism as a dysfunction that I wish could be cured. It is an active part of my identity. (That's why I've chosen to capitalize it.) Autism is a set of unique traits that I see as the gifts that make me who I am. 

But Autism is also a disability; it falls outside of the "norm" of neurotypical dominant culture. I am different, and different can be less than. Different can be unsafe.

Sharing this is a risk for me. You might see me differently. 

But I've spent my whole life trying to protect myself from being seen as broken, wrong, and fragile. And I'm not scared of that now. Because I know that I'm not any of those things. 

I have a neurological system that works differently. It's not worse or better than the neurotypical system. It's just different. It has major advantages and joys that come along with it—and it has limitations and needs. Getting to know my system means that I can make the most of the advantages and care for the limitations. 

What led me to discover I’m autistic at age 37

In part, it was the pandemic. Lockdown dramatically dialed down my daily sensory exposure. I wasn't in an open office space. I wasn't going to multiple live events throughout the week. I had so much more control over my sensory experience from the safety of my home office. And I noticed a dramatic change in my happiness and well-being.

In part, it was also emerging conversations about “neurodiversity” at work. I hadn't heard that word before three years ago. During the remote work of the pandemic, articles started flowing on the topic. A participant in one of my leadership sessions gave me feedback on how I could make my virtual workshops more accessible for neurodivergent participants. The more I researched inclusive practices, the more I recognized myself in what I was reading. 

In part, my realization was driven by new understandings of how neurodivergent conditions present differently in women, gender nonconforming folks, and people of color. Our understanding of so many medical conditions are based on how they appear in cis-gender middle to upper class white males/children, and Autism is no exception. Girls and women have flown under the radar because the social pressures and rewards for us to "mask" (hide our differences) are so much greater. 

Right now, there is a great awakening of adult women who are realizing that they have neurodivergent conditions. There simply wasn't a template for understanding what I was experiencing as a girl in the early 90's. Things are starting to change, but only starting. The diagnostic and support tools are still very much geared toward young boys. That's why I am what's called a "self-realized" or "self-determined" Autistic person. I haven't received a formal medical diagnosis (that may be to come), but I've done enough research on my own and with my therapist and doctor to be fully confident that my experience of this world fits in this condition, and that I belong within the Autistic community. 

In major part, though, this realization was guided by reading the stories of the Autistic women outlined above. In the pages of each of their books, I found pieces of myself. I found words that expressed things that I've experienced and struggled with for 37 years. I learned tools and perspectives that cast Autism and my understanding of myself in a whole new light. I found something that really made sense of my actual experience in this world. 

How learning I’m Autistic has improved my life

I've learned something totally new about myself at the age of 37! I can say that I truly know myself better than I did at the beginning of this year.

I know how to take better care of myself. Understanding how my system works means that I can proactively plan for and respond to my needs in more effective ways. I can acknowledge what I need and get brave enough to ask for it. I’m in a better position to set up sustainable practices, prevent burnout, do better work, and actually enjoy it. 

I can look back at my life through a new lens and revisit big and small moments that suddenly make more sense to me, like:

--> The social struggles I had in seventh grade, that left me in tears every day, that led to me to skip the eighth grade so that I could get a fresh start at a new high school.

--> The meltdown I had on a beach in Punakaiki, New Zealand after traveling with a group of students for two weeks without any alone time. 

--> The fact that I always cry on my birthday, which falls two days after Christmas. My family figured that it was because I felt like I was getting short-changed. Now I know: it's because I'm too overwhelmed and overstimulated for more attention, more parties, more cake. 

I can forgive and have compassion for the grown-ups around me who didn’t have a framework for understanding what I was experiencing, given that this knowledge is so new.

I have an opportunity to show up for myself and for others. I can share what I’ve learned about Autism and neurodivergence and hopefully make space for others to better understand themselves and accept others.



what autism means for my work

I love my job! I am in the exact right work for me. Since starting my business, work has been a safe haven for me. Some intuitive part of me guided myself into a work life that suits my system, my limitations, and my gifts—before I understood them consciously. 

The crux of my work is listening, being receptive and open to understanding others, making connections and synthesizing themes that I can reflect back to my client. I get to work with clients deeply, one on one. I get to nerd out on my special interests like leadership and career development models and tools. It feels good and satisfying. I am uniquely qualified for this. It feels natural and comes easily for me. I am great at it. And it is the joy of my life.

I work in an office that I have designed in my own home. On most days, it’s quiet, and I can control my own schedule. I can manage my sensory exposure and give clients my full focus. I can lay under my weighted blanket for a bit to calm my system after leading a two-hour training session. I can make the best Earl Grey tea. 

I don’t have a boss that I need to ask for accommodations. I make them myself. That has its ups and downs! I continue to struggle with finding the balance between how much I take on and my actual capacity. My ambition outstrips my capacity every time. But in order to do great work, I need to be whole. I am still figuring that out, but the information that I have learned about myself this year casts it in a whole new light that gives me hope for designing a work routine that supports both my system and my clients.

Key Lessons to Share

Whether or not you are neurodivergent, I hope there is something for you to take away here:

  • You can always learn new things about yourself, even as an adult.

  • You can use that self-knowledge to design a life and a work life that aligns with your own unique gifts and needs.

  • Knowing how to take care of your own system is key to sustainable work.

  • Approach difference with curiosity.

  • The pursuit of getting to know yourself is no joke. It is hard. It is worth it. 

What’s next

I am scheduled for a formal neuropsych evaluation in April 2024. More to come on that. In the meantime, I’m staying true to the process that’s unfolding for me. And I’m interested in connecting with others in the Autistic community—especially adults integrating a new diagnosis.

I’m creating my own path in life. I keep realizing—on more and more levels—that the common narrative about the “right” way to go through life doesn’t fit for me, and for so many others. It takes courage to acknowledge my actual experience of this world, to honor my needs over the “shoulds” and the people I think that I need to keep happy. 

I hope sharing my story gives you courage to pursue understanding yourself and how you might create your own path that works for you, too. 



Further Resources on Autism in Adult Women:

[Webpage] If you're curious to learn more about Autism and what we know about it today, author Katherine May's Autistic Resources webpage is excellent for more information about some key terminology and resources: https://katherine-may.co.uk/autism-resource-page

[Podcast] I also recommend listening to this episode of NPR’s Life Kit: How "unmasking" leads to freedom for autistic and other neurodivergent people, which especially explores the experience of masking for women, non-gender conforming people, and people of color. 


Reading List:

Carole Ann Penney, Founder

As a Career Strategist and Founder of Penney Leadership, I help mission-driven leaders navigate their work and lives with purpose and resilience.

http://www.penneyleadership.com
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