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Jackie Schuld Art Therapy Blog

When I Learned I Was Autistic It All Made Sense: Late-Identified Autistic Interview


This is the 32nd interview in my series Interviewing Late-Identified Autistics. Priscilla is a late-identified autistic. My questions are in bold and Priscilla's responses follow in regular typeface.

 

What name and pronouns do you use?

My name is Priscilla Stuckey, and my pronouns are she/her.


Priscilla

How old were you when you learned you were autistic?

I was 64—about two years ago.


How did you learn you are autistic?

It was a slowly dawning realization. The pandemic was definitely part of it—having a completely different reaction to social isolation than most people did. I was content with it! I need to say here that I wasn’t alone; I was really fortunate because I had company at home with my sweetheart, so I was never lonely. But hanging out with him was enough social life. I could let the rest of the world go by and feel content. Even relieved! That was a big eye-opener: Why would I feel relieved at having no social life? It went against what I thought I knew—that I was someone who needed community. But here, during the pandemic, I have less of it and I’m feeling relieved? It didn’t make sense.


And at the same time, I found myself listening to the voices of autistic people for the first time—watching YouTube videos and reading autism advocates online. And I learned I had some really hurtful and outdated ideas about what autism was—the old dehumanizing stereotypes. Like, I knew a little autistic girl years ago, the daughter of some friends. She couldn’t make eye contact, and she didn’t want to be touched, and she didn’t ever speak. So I thought that was autism. But then on social media I was finding so many variations of autism, like people who learned to read at three and are highly verbal, like I am. That’s when I really had to sit up and take notice. So I delved even deeper and found even more similarities with autistic people. Over several months I kept trying the identity on—and I kept finding that it fit.


How did you decide whether to self-identify or diagnose?

I wondered for a long time whether it was worth it to go for a diagnosis. But then I realized that I wanted to write about being autistic, maybe publish about it. And I knew that having the backing of a formal diagnosis would give me more confidence in being public about it.


How did you feel when you learned you were autistic?

Relieved! It was totally unexpected—a lot of relief! I have a lifelong habit of observing and seeking to understand my own internal rhythms, and over the years I’d made sense of a lot of them. But there were a few things I kept tripping over. Like being a head-banger as a child—what was that about? I get so overwhelmed from time to time—what’s that about? Or I find other people reacting to me in ways that seem kind of—odd.


When I learned I was autistic, it all made sense. Every last piece. I felt so relieved! And after the relief I felt gratitude.


And then I spent some more months reviewing my earlier life in light of this new information. It was a new lens that brought all kinds of things from the past into a different sort of focus. And it gave me new words for thinking about old relationships. So that brought up its own share of feelings. Sometimes hurt and anger—those people pathologized me! And sometimes a kind of gentle understanding—wow, they didn’t have a clue; I didn’t have a clue. We were all just winging it.


How has learning you are autistic impacted your life?

Having this new lens gives me a lot more peace about past relationships. The biggest gift, I think, is finding new understanding for my mother. That was the hardest relationship of my life. It was emotionally and verbally abusive, very damaging. I spent years healing my heart from it. And eventually I did heal—enough so that the old pain didn’t haunt my life anymore, and I could feel compassion for her. But still, it just didn’t make sense—how could she have become the person she did? I knew she suffered under patriarchy, but that didn’t seem to explain it all either.


So then in my sixties I learn about autism, and I learn what it looks like in girls and women, and suddenly I can see the signs all over my mother’s life. And suddenly her difficulties make a lot more sense. And her poor mental health makes more sense. It’s the kind of poor mental health that might develop after a lifetime of being autistic without any words for it—feeling different for no apparent reason, and feeling bad about yourself because you feel so different, and wanting something more out of life than others seem to want, then feeling like no one understands you or really supports you, and you’re probably a bad person anyway for wanting these things because no one else has to try this hard. And after decades of this you feel so desperate that you finally stop trying to be good. You stop masking, and you let all the frustration out, and it boils over, and it hurts people and destroys things.


Thinking about her as autistic gives me these words. It completes the picture. Thinking of her as autistic takes me beyond compassion toward something even more powerful. Now I understand.


Your Current Life


How have you modified or adapted your life since learning you’re autistic?

I’m leaning in to solitude. It’s also because I’m working on some writing projects, and silence and solitude help the writing. But I don’t find myself looking for friends, and that feels really strange. I’ve always known that I enjoy one-on-one socializing more than other kinds. Now that I know I’m autistic, I’m completely unapologetic about that, and I don’t even try to blend into groups anymore.


What I AM doing is giving more conscious attention to one-on-one contacts and friendships online—through social media and writing platforms and email. I am valuing those relationships more and cultivating more of them. Being online takes less social energy because it’s in my own time and with less face-to-face contact.

So I guess you could say I’m even more aware than I used to be of how full or empty my own cup is, and just how much conscious attention it takes to keep it full enough so I can share with others. And during this time in my life I have less social energy overall, so what I do have has to be budgeted even more carefully.

So all this is helping me rethink how to market my writing too. I am working on another book, but if and when it is published, how do I do that tricky dance of socializing enough to get the word out but without getting overwhelmed and burned out? So I’m brainstorming autistic-friendly ways of doing book interviews and book promotion. And I’d love to hear how other autistic writers manage this!


In what ways does being autistic enhance your life?

It’s funny, I think some of the challenges themselves have pushed me to accommodate in ways that are enormously life enhancing. For example, I’m sensitive to noise and to the presence of other people, so when we move I’ve always had to find a place to live that’s on the edge of things—edge of a neighborhood, edge of a city. I need to be closer to the animals and the wild lands. But as it turns out, the edges often have the best views! And they might be more affordable too. So we end up on the edge of a town, and we often have a great view, great connection with the natural world. Which is perfect for me since my work now is all about nature writing and nature spirituality. My friends think of me as someone who always lands in a sweet spot! And I do, but it’s after intense looking, and refusing to compromise. And the universe has been exceptionally kind—in all the times we’ve had to move, we’ve always landed in a beautiful place.

Being unable to compromise about what I need turns out to be a big ally when it comes to quality of life! All my life I watched other people push past their limits and do just fine, but I learned early on that I can’t do that. I didn’t have an explanation for it at the time, I just wondered if something was wrong with me that I couldn’t get away with things that other people got away with.


At one point, in my early thirties, I was even sick for several years with chronic fatigue syndrome, after a flu virus. And especially through those years of being sick, I learned to stay close to what I truly need and forget about the rest. And guess what? Life gets a lot more enjoyable when you live that way!


I learned to put my health absolutely first—just to listen to my body in this patient and humble way, day after day. And I learned it earlier in life than most people learn it. Which led to a happier quality of life all the way along. And it’s helping me adjust to getting older now too—it’s not as much of a shock to find my limits now in my sixties as it might be for people who haven’t been aware of their limits all along.


What are some of the challenges you face in being autistic?

Noise and motion can set me on edge. I’m sensitive to all mechanical and industrial noises. There’s a jackhammer at a distant neighbor’s house right now, and I’m grinding my teeth and reaching for the noise-canceling headphones. My sweetie bought me a pair just a few weeks ago, and I honestly don’t know how I survived all these decades without them.


And then about ten years ago my digestive tract went into retirement. I know that a lot of autistic people have digestive challenges, so I want to mention one thing that helps me. I discovered I have low stomach acid. Most doctors, even gastroenterologists, aren’t familiar with low stomach acid because they’re more used to treating high acid. So I want to help the word get out that low stomach acid is possible too, especially as we get older, because we produce less of it. I take acid supplement capsules with every meal, and right now they’re saving my life. They don’t solve everything for me, but they do allow me to eat without too much discomfort afterward.


If you work, what do you do for work? How does your autistic identity impact your work?

I had a hard time finding work that suited me. I was twenty-eight before I found my professional trade, which turned out to be book editing. I sensed early on that I couldn’t handle a regular workweek, and I spent my twenties wondering what was wrong with me that I couldn’t follow this schedule that everyone else in the world seemed to follow with no problem. Finally I just accepted that I had to be self-employed, and I found I was good at editing. So I made a thirty-year profession of editing books and being a writing coach.


Being autistic was a big asset in this work, because when you’re editing someone else’s words, you have to be able to “get inside their head” to figure out what they intended to say and to make their words shine in the clearest possible light. So the autistic habit of watching and reading others and being super-aware of what others are experiencing served me well; it became a foundational skill for editing.

But being a freelancer is financially risky, so I had to accept that part of it too—feeling on the edge financially, living from month to month. I know this is a challenge for many autistic people.


What helps you prevent or cope with moments of overwhelm?

I’ve taken up hand flapping! Seriously, I had no idea that it was possible or how much it could help. I’ve always done a lot of light exercising, like stretching and yoga, and a lot of meditation too, because it always seemed I needed to work harder to find inner peace than other people did. I often felt all balled up inside, and I learned over the years how to work it out or breathe through it and find calm again. Now, in light of being autistic, I understand that I was self-regulating—and easy, rhythmic movement was one thing that helped. But it had never occurred to me to do fast or vigorous movement.


So once I learned about autism, I learned about hand flapping too, and how important and necessary it is to many autistic people. And I started experimenting. And it helped! So now if I feel overwhelmed, like with frustration or too much noise, and I feel my center of balance slip away, I may flap my hands or shake my arms or legs or feet, or just shake all over like a dog. Dogs are smart this way—they know it helps put them right again. And it helps me too! Some kind of fast motion—loose chaotic movement—helps in a big way. That feeling of frustration melts away much faster. I find my center of balance more quickly.


Since being diagnosed, I have learned about ABA therapy (Applied Behavioral Analysis) and how they try to train autistic children not to flap hands or do other unusual movements. I don’t have words for how abusive and cruel this is. Hand flapping hurts no one. It’s just that people who don’t need to do it might feel a little awkward and uncomfortable when they see it. How much better the world would be if we spent those same resources helping neurotypical children and adults get more comfortable with differences!


What skills or strategies have helped you to work with your autistic mind?

I learned the yoga meditation called shavasana pretty early in life—more than forty years ago, right after college. I took a yoga class, and at the end of class we lay down on our backs on our mats and the teacher led us through a full-body relaxation meditation. So I’ve probably done that meditation at some point during every day or night since then. It’s carried me through many wakeful nights—all those hours before dawn when I wake up too early and can’t get back to sleep. At least I am doing a good simulation of relaxing! And it is usually enough to get me through the next day.


For the past ten years I’ve also practiced a kind of prayer or meditation that is enormously helpful. People often call it shamanic journeying, or using the creative imagination in prayer. The psychologist Carl Jung did a form of it and called it active imagination. I call it “going on a spirit journey.” It’s a meditative meeting with an inner spiritual helper. And in that inner room, in the presence of one’s helper, a person always feels supported and loved without question. And the helper guides a person toward images that help them puzzle out everyday life—very specific images or impressions that are tailored to that person’s life. It leads to more mental peace, more ability to be oneself in the world, more ability to find the ground under one’s feet. I find it enormously helpful for my own presence of mind, and I watch it help other people in similar ways. Because I’m really lucky—I get to work with people one-on-one, over the phone, to help them strengthen this connection within themselves. I provide some support as they get familiar with this way of quiet listening.


I wrote a book about how I learned this practice, Tamed by a Bear: Coming Home to Nature-Spirit-Self. It’s like a quiet journal of how I changed during the first year of going on spirit journeys. One of the first things that happened was that my sweetheart said, “You seem happier.” And I was—and still am.


But the other thing to say about an autistic mind is that it brings gifts too. An autistic mind can be very quick and agile and able to absorb a great deal of information. I learned to read when I was three or four years old, and I have spent a lifetime being hungry for learning, and I credit my autistic self for that. In the writing I do now, I often synthesize information from many different directions, and readers often say they find this broader or deeper view useful. It helps them make sense of the world. It helps me make sense of the world too!


What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?

I’ve often found more help for my health needs in alternative medicines, such as acupuncture. It’s often a more healing environment, more tailored to an individual person, which, by definition, helps an autistic person feel more comfortable.

Western medicine is traditionally very hierarchical, so the best improvement in the system for autistic people would be to change the mindset of the whole system—toward listening to the patient and regarding the patient as the best authority on their own experience. Slowly this is happening, but there are still many providers who regard themselves as the authority. And when I end up in one of their offices, it tends to be a bumpy ride because by instinct I resist hierarchy and authority. I’ve heard this is common among autistic people—a deep sense of fairness and justice, and an impatience with authority, especially arbitrary authority.


And, just on the everyday level, every trip across town to meet with a healthcare provider eats up a lot of social energy and is exhausting to the senses. So I wish for more telehealth options, at least for some kinds of appointments. This could help autistic people so much!


Your Past


What ways did you camouflage or mask?

For much of my life I didn’t trust my own perspective. We often talk about masking as the things we do to blend in and not feel different, but for me the bigger thing—the thing underneath it all—was that feeling different led me to doubt my own perception. And if you don’t have your own perception, what have you got? You try to become what others expect or what “seems” good or right because you see that it works for others. So you lose that foundational connection to your own source of knowing. You start seeing with others’ eyes, maybe accepting their judgments as true.


So for me it’s been a lifelong process of getting settled firmly into my own feet and making peace with my own path. And especially reclaiming my own vision. In each decade of life I find myself going even deeper into my own ways of seeing. Deeper into self-trust. Deeper into self-respect.


And in each decade of life, it seems, I discover ever more subtle ways that I have undervalued my own perception. It can become a reflex, to brush one’s own view away, because it’s “just me” or “I was just feeling cranky that day” or “I obviously don’t have the whole truth.”


No one has the whole truth! Which makes it that much more important to commit to the piece of truth that a person DOES have. To bring forward the piece of seeing that is possible only from THIS body in THIS time and place. So it’s always a practice to take my own perception seriously. To pay attention instead of minimizing. Like, “If I really listened to what is going on inside right now, what could I learn?”


And I’m learning to find truthfulness even in my most reactive moments. It’s like any big reaction I have just shows how important the kernel of truth is that’s hiding inside it. So the job is not to discount the reaction, but to use it as an arrow. It is pointing to something hidden, something truthful at the center. And if I sit with it, and peel back the wrappings, I can find that kernel at the center. And there always IS something truthful there.


I have to add here that each challenge may hold a gift too. So if masking, for me, has meant that sometimes I valued the perspective of others over my own, it’s also possible to reframe that habit. From another perspective, it just looks like empathy! Reframing things can be useful. A person who pays such close attention to others, like many autistic people do, can easily pick up what others are seeing and feeling. We can be deeply empathetic, even empathic.



How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?

I wrote a memoir, Kissed by a Fox, and it was published when I was 55, long before I learned I am autistic. And now I am preparing the audiobook version, which means I am reading it aloud, reliving it again line by line. And now I see signs of autism all over those earlier years. I have to laugh. It’s become a game I play in each chapter. I ask, So what were the autistic clues at that point in my life? And of course I’m finding them!


And then there’s a little clue from the universe right on the cover of the book. Before the book came out, I asked a lot of different writers if they would consider providing a blurb. But in the end, it was Temple Grandin’s words that the publisher put on the cover: “Kissed by a Fox will make you think about life and nature in a different way.” Now I see how appropriate—Temple Grandin sees the world visually, as animals do. And that’s the heart of the experiences with nature that I’m writing about in the book. So this famous autistic person became the cover voice for the book, years before I learned I was autistic.


How did being an undiagnosed autistic impact romantic relationships?

Wow, this is a big one. Here’s where doubting my own perception really played out. In relationships I kept second-guessing myself. If the relationship wasn’t going smoothly, I always felt there must be something I could do or should do differently. It was easy for me to feel more responsible for what was happening between us. It must be me, right? Because I’m different! So I would try even harder to adjust to the other person. I think that was my biggest way of masking: trying to match my partner.


So I stayed in a couple relationships even when they weren’t working, and even when the partner placed the blame or responsibility on me—when he felt I was lacking in some way, like I wasn’t social enough or wasn’t emotionally healthy by his standards. And, in hindsight, I see in each of those cases that I was just fine—dealing with challenges, yes, but fundamentally fine. And I wonder if each of those men was feeling unsure of himself—and what if he was neurodivergent too? So passing judgment on his partner might have been his way of reassuring himself that he wasn’t too different, that he was okay.


So now I’m going on nineteen years with the love of my life, and I have only one thing to say: respect. It has to be the foundation between two people. My sweetheart doesn’t like everything I do, but even if I am cranky or overwhelmed or approaching a meltdown, he never thinks less of me. It never puts a ding in his respect and love for me. And my intention is always to offer him the same generosity.


Talking to Others About Autism


How do you describe autism to people who are not familiar with it?

I produce a podcast, and I did one episode, called “Being Autistic,” where I try to do that. I talk about my own learning curve—finding out about the varieties of autism, allowing my old stereotypes to get blown away like dust. I like to emphasize how diversity lends strength and resilience to a society. How differences are beyond valuable; they’re needed!



Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?

I just read Devon Price’s Unmasking Autism, and it has a ton of great insights! He covers the autism research thoroughly, and he has a generous spirit—he makes room in the book for many ways of being. One of the most important chapters is about how society could shift to make more room for autistic people—and it’s such a valuable chapter! He also provides a series of questionnaires about your core values. So I accepted his invitation. I spent some time reflecting on my core values at this stage of life, in light of being autistic. And it was fascinating! I found that the core shape of things is pretty continuous with earlier parts of my life, but now I have more words for talking about it.


Connecting with You


If someone would like to connect with you, how can they reach you?

You can always reach me at my Substack address: priscillastuckey@substack.com. Or on the contact form on my website, https://priscillastuckey.com.


Do you have any works, websites, or other creative ventures you would like to share with others?

My website is here: https://priscillastuckey.com/.


You can find more information about spirit journeys on the Spiritual Mentoring page here: https://priscillastuckey.com/spiritual-mentoring/. The Spiritual Mentoring page also has more info about what it looks like to meet with me on the phone in one-on-one sessions to explore this practice.


My podcast and newsletter is called “Nature :: Spirit – Exploring the spirituality of a living world.” You can listen on any podcast player. And you can listen or read the transcript at Substack: https://priscillastuckey.substack.com/. It’s a scripted podcast because, as an autistic person, I feel I can express myself so much better in writing! Each episode is around 20 minutes of listening. The “Being Autistic” episode also goes into more detail about how I felt when I got the diagnosis and how being autistic shaped my editing and teaching careers. Again, you can find that episode here: https://priscillastuckey.substack.com/p/33-being-autistic-8ee#details


My first book is Kissed by a Fox: And Other Stories of Friendship in Nature (Counterpoint Press, 2012). It won the WILLA Award in Creative Nonfiction. It is a personal memoir of how connecting with nature helped heal my heart, and it’s also a cultural memoir—how we arrived at this precarious ecological moment in human history. You can find more about it on my website here: https://priscillastuckey.com/kissed-by-a-fox/.


My second book is Tamed by a Bear: Coming Home to Nature-Spirit-Self (Counterpoint Press, 2017). It’s the story of how I found the spiritual path of going on spirit journeys, and what happened during the first year of practice. More about the book on my website here: https://priscillastuckey.com/tamed-by-a-bear/.

 

Thank you for reading. I’m looking for more late identified autistics to complete interviews just like this one. I’ll send you the questions and you can complete them on your own time. Please email me at jackieschuldart@gmail.com if you are interested.

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