Diagnosed Autistic at age 38Feb 03, 2022
I am making lists these days, lists of lists. Every journal page has written at the top one of the criteria from the Diagnostic Statistical Manual (DSM) for diagnosing autism. Listed on the page below are all my pieces of evidence. My research has brought me to the inescapable opinion that I might be autistic. Or if I am honest, my inescapable opinion is that I definitely am autistic, though I still haven’t uttered these words aloud. I am terrified. I have this massive question mark in my life that has never existed before, a question that I have never even considered. So I make lists, and lists of lists.
Written across the top of the page is “highly restricted, fixated interests that are abnormal in intensity or focus.” I try not to stare at the word “abnormal,” preferring to give it the side eye. Why are you written in my journal? I ask it. I have always wanted to be normal. I have blurred any harsh edges of my personality, ceased having opinions, and cultivated all my most universally likable traits to ensure that the largest number of people will like me at all times. It is exhausting to be so likable all the time. I am a careful critic of my own abnormality, and I notice minute changes in the environment and micro-preferences that others unknowingly express. I change myself compulsively. I will be normal. I will be liked. I will be safe. No one can hurt me if I do not have any “me” to be hurt.
I cannot see past the word “abnormal” so I rewrite each of the criteria with more friendly language. I discover that autistic advocates call these abnormally restricted, fixated interests “special interests” or “spins”, so I add this phrase to the top of my list. I waggle my head from side to side like a duck as I say “spin” inside my head. This word makes me happy. This page begins to fill in with lists of memories, ideas, descriptions.
The lists on this page are the only ones that makes me unequivocally happy. The rest are peppered with stories of pain and trauma, loss and confusion. But my “restricted, fixated interests” page is a delight, and I feel I’ve discovered a deep truth: having special interests is one of the greatest delights of being autistic. I do not know what it is like to live without restricted, fixated interests. When my brain is happily settled into a spin, hours fly by without me noticing; I am a sponge and information flows into every piece of me. I don’t just know the information; it becomes a part of me. As a young one, my special interest was journalism. I loved writing stories that shed light on the daily lives of people around me. At age 8, I began to publish a neighborhood newsletter. I got a polaroid camera and hand wrote stories of a neighbor’s new dog, community celebrations, and profiles of neighborhood kids. As a journalist, I could observe the world around me and translate my noticings and musings into words that connected me to that world. It was a lens for understanding and connection. Many autistic kids describe feeling like being an alien on a foreign planet, unable to understand the local customs. Or playing a game where everyone else has downloaded the rule book and they haven’t. I felt like a foreign correspondent, venturing out into a strange and often delightful world that I could never understand, and writing was my way in. With notebook in hand, I had an excuse to be curious, to ask odd questions, and to not know what everyone else seemed to know.
Other lists filled in with darker memories, lists of pain. “Persistent deficits in social communication and social interaction across multiple contexts.” I write about when my college roommates confronted me about how much time I spent on my extracurricular projects, that I stood them up, ignored them, and lied about my plans. I describe my exquisite pain at parties, how horribly uncomfortable I feel in my own skin, not knowing where to look, who to talk to, and how to join in these endless casual conversations. I remember a date with my now-husband when we were both teenagers, my awkwardness palpable. “I’m going to be better at being 30 than I am at being 20,” I promised. “Mothers Morning Out, that’s going to be my scene,” I wishfully predicted, not knowing just how hard those social interactions were also going to be. Notes like “Talk to strangers at bars about death,” and “sometimes I say nothing for an entire evening with friends” pepper the page. In one fit of frustration, I write “WHY IS IT SO HARD?” in pink pen. My heart years for an answer to this exact question. I am discovering just how desperately I want to be autistic. My terror is not of this new label. I am terrified that I will loose another way to belong. I am terrified I will fail at being this type of human too.
When I hear about an autistic and ADHD woman who does gentle, affirming autism diagnoses, I send her a desperate email. My fingers shake as I attempt to type on my tiny phone screen, a task I decide to undertake while I wait for yet another tray of chicken nuggets to cook. I give myself 10 minutes to finish this email. When the nuggets ding, I will send the email. I will take the chance. I will ask her for an evaluation.
I tell no one.
When she kindly and professionally confirms, we schedule my evaluation for July 3, one day before our big national holiday and 4 days before my 38 birthday. The cost is high, so I rationalize that this will be my birthday present to myself. I prepare to tell my husband.
All of my endless research, list making, and agonizing happens in secret. I am terrified to be not autistic, and I am equally terrified of showing others just how much I want this. I want to be autistic more than I have wanted anything in a long, long time. What if they don’t believe me because I want it so much? What if it isn’t true, it’s just another crazy idea that I believe in? Telling my husband feels amazing. I get a few words out, begin to cry, and he hugs me, a full bear hug. In his tightly encircling arms I know that I’ve gotten the answer to my real question, one I didn’t even know I was asking. Will you love me if I am autistic?
When the day arrives, we arrange childcare so we can be alone. Finding an adult all my children will tolerate is a feat, so we bask in our big success as we sit in our quiet house. I have asked my husband to join the call with me. It is too much to do alone, bringing my vibrant otherness into the medical system to be dissected and labeled with “severe deficits” and “abnormality”. I tremble at my computer, clutching my husband’s hand, fidgeting and rearranging, waiting for the zoom call to start. My husband asks if I am ok, and was I ready for this. No, I say, tears threatening to tumble down my cheeks. And yes, I think I’ve been waiting for this my whole life. I check to see that my journals are beside me, filled with my lists of ample, well-researched evidence to prove my autism. When the cheerful, smiling middle aged woman flashes on the screen, my heart feels like it froze into a solid block of ice. It is happening. I am having my own autism evaluation.
I feel the urge to laugh hysterically and remember the same sensation during my son M’s evaluation four months earlier. I was at the cathedral of medical respectability, Duke University Hospital, dressed up for the occasion in real clothes, not my ubiquitous pink joggers and gray sweatshirt. I brought my binder full of previous evaluations in a cute shoulder bag instead of my usual battered backpack. I was the advanced guard, doing the first hour-long oral interview before my son would join us. The original plan involved my son sitting quietly in the room while we talked about all his quirks and failings. I saw that plan as a disaster from a million miles away. He would not sit quietly and patiently. He would hear all the things I said and shut down into his tiny, small, mute place. He would hate the therapists doing the questioning. He would meltdown. He would scream and hit and destroy. We would leave, ashamed, no evaluation in sight. So I pushed back on their plan. “I am not sure that is going to work too well for my kiddo,” I said, images of a destroyed evaluation room and a terrorized therapist flashing before my eyes. After many emails and checking with supervisors, we arrived at this new plan. One quiet hour for me to answer questions, while my son got a donut and played. Then he would arrive for his short 20 minute evaluation freshly buttered up and ready to participate. Like me, he loves a clearly laid out plan.
In the Duke Autism Center, I perched on a pleather sofa while the therapist settled in a chair, surrounded by clipboards and notes. I felt like a little bird, plucked from a nest and placed in an examination room. I shivered. As she asked me a long list of increasingly complex questions, my anxiety rose. My hands began to shake, and my breath came in short gasps. In order to focus on giving truthful and complete answers, I couldn’t also mask my discomfort. I needed to soothe myself, so I began to rock, first imperceptibly, then obviously, rocking my body forward and backward as though the still sofa were gliding along. I could not look at her eyes; it just wasn’t possible. I shook my fingers in front of me like I played imaginary piano keys. Just the sight of them flitting in the air calmed me. I had never allowed another human to see me like this. These were calming things I only did while alone. Aware that I was acting “different,” but unable to stop, some small piece of me felt happy and whole. Finally, I “look” autistic.
Masking is a concept that autistic advocates have adopted to explain the experience of autists who spend considerable energy hiding their autistic self, instead adopting an alternate identity that is more neurotypical. Research is woefully inadequate about the influence of masking on autistic mental health and identity formation. Yet it is significantly that autistic adults use the language of the gay rights movement — “closeted”, “coming out,” and “openly” — to describe the experience of unmasking and revealing autistic identity to others. Following decades of intense activism by LGBTQ leaders, our society has accepted that some identities are so vulnerable that they are hidden beneath layers of protection, sometimes known to oneself and sometimes unknown, to be discovered. Knowing who you are does not then mean that you will act on this knowledge, or have the support to share with others. The resonance goes deeper. Preliminary research shows that gender and sexual identity develops differently in autistic people than it does in neurotypical people, leading to an increased percentage of autists who identify as LGBTQ. “Coming out” as autistic and being “openly” autistic seems as though it would be as simple as dropping the mask. Yet for me, it wasn’t so simple.
For 38 years, I believed that mask was my Self, and that the immense effort it took to play that part was simply my fault. Not knowing what it felt like to inhabit anyone else’s skin, I assumed that others were trying just as hard, but made it look easier. They played their parts and did it better. I was simply not coping well with the reality of being human.
The cheerful, smiling woman on the zoom screen asks me to tell her about myself. I find this an overwhelmingly challenging question to answer and ask if she can go first while I organize my thoughts. I relax as she begins a long and rambling answer, visibly fidgeting and laughing awkwardly. I have never seen an autistic, ADHD person fully inhabit their identity while performing the role of doctor. I am transfixed. She is brilliant, insightful, clear, and compelling. She is also jumpy, silly, and roundabout. I feel my frozen heart melting into a pool of delight. I think I love this woman. I think I will tell her everything. Out of the corner of my eye, I glimpse my mask slipping and falling to shatter into invisibility on my soft carpet. A new face looks back at me from the tiny corner of the zoom screen. I am not well acquainted with the woman behind the mask.
A new self blinks at me from the screen, freshly awakened, bleary in the bright light of day. An autistic self, filled with self-knowledge, dreaming new dreams. As I answer questions and chat with the evaluator, I am worried that our conversation is too meandery and casual to be a real autism evaluation. I remember those cold, clinical questions in my son’s Duke interview and wonder if this can be just as valid, just as real. After 90 minutes of conversation, my evaluator shifts tone. Her doctor-side is showing here; the dual PhDs slide into place, and her vast knowledge of me from this simple, light conversation astounds me. My diagnosis is coming. I can feel it rushing toward me.
She shares that I have an anxiety disorder for sure, no big surprise there. She shares this lightly. I am grateful. I may be ADHD, several indicators, not enough to diagnose, and may be explained other ways. I experience aphantasia, with a rare brain type that renders me unable to see images in my mind’s eye. Even rarer, I dream vividly, meaning that my brain creates and stores images, but I cannot access them with my conscious mind. Her eyes sparkle as she tells me this. It is very cool, she assures me. I can tell she is fascinated by my brain, and I feel special.
I am highly sensitive, emotionally and physically; I sense and feel others’ emotions strongly, and get completely flooded by my sensitivity. She shares her strategy to cope with her bodily sensitivity—she wears the same outfit every day in a range of colors. I nod vigorously. I have recently given myself permission to wear the same thing everyday too. It is life changing, I report. She laughs. We get it. Coping with emotional sensitivity is harder, she concedes. When emotions rise up, she sets a timer, pulls out a particular playlist, and gives herself over to it. The timer is important. I tell my husband too, she shares. Sometimes you need to tell yourself that it will end, and make sure it does.
I experience synesthesia, the blurring of two senses, or when you experience one sense through another. In my case, certain colors and visual textures make me dizzy. There’s more here; it’s something to get curious about, she tells me. I make intermittent, inconsistent eye contact. I have rocked through the whole interview, was I aware of this?, she asks. I was aware, and it felt good, I share. She nods. She understands.
I have had lifelong challenges in social interactions and social communication. I have been suppressing my confusion and questions and blaming myself for not “getting it.” It is important to begin to name this, she says. Ask when you don’t actually understand what someone is saying. Get help interpreting meaning. Relearn how to trust myself and honor my confusion. It is a signal that I need more support.
The two hours is up. I thank her profusely, and she gushes back about how much she enjoyed the time. I am encouraged to reach out with any questions, assured it will take time to assimilate all this new information. All too quickly, her vibrant smile and vast knowledge of the real me disappears. I feel as though someone has turned off the lights, and I am plunged into sudden blackness. For two hours, I basked in the reflection of the sun, glowing like the full moon. Now I am just a rock, floating in the darkness.
Are you ok? my husband asks again.
I need a little time, I say, rocking back and forth and staring out the window. I need some time to myself. He leaves me alone and I rock and rock, wishing to glow.
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