I’m On The Spectrum!

Last winter, my mental health team suggested we go over an Autism assessment questionnaire together. I scored in the high-functioning range, previously known as Asperger’s, now referred to as Autism Spectrum Disorder (ASD) Level 1.

Hearing this threw me into a bit of a headspin. At first, I wasn’t sure exactly what it meant, so over the next six months, I consumed every research paper and podcast I could find on adult women receiving a late diagnosis. My eyes were wide open, and I saw myself. I cried often at the feeling of validation and affirmation I finally felt. I didn’t know I needed to know.

A lot of times, especially in young women, we learn to “mask” our symptoms through adulthood because we develop a sense of mimicking socially acceptable behaviors and identities. I feel like this is the first time in my life I actually have the space to get to know myself without any outside influences, and I’m noticing that I relate to so many of the markers—things like my sensory hypersensitivities to light, sound, and smell; the fact that I prefer to sit on the floor in unusual positions; that I’ve always walked on my tiptoes; my intense moral drive for social justice; my rigidity when it comes to right and wrong, rules, and plans; and my tendency to become really emotionally activated in certain settings.

It also explains why I may have missed some social cues—where I wasn’t able to see manipulative behaviors for what they were or protect myself at the time from being taken advantage of. Big pills to swallow, but also some relief in knowing there’s an explanation. I’m learning to build a life that supports my unique needs, without blaming myself or shaming those needs for being different.

I was devastated to find that the criteria and assessment tools for a formal diagnosis were established based on a young male baseline. Autism can often present much differently for others, and because of this biased data, women are often misdiagnosed with inaccurate mental health conditions and prescribed unnecessary medication before reaching the right conclusion—if they ever do.

Research shows that unless they have obvious cognitive or behavioral issues, a formal diagnosis is ten times less likely for women and young girls than for boys. The process can take between four to nine years and costs thousands of dollars. As a result, informed self-diagnosis is more widely accepted today.

Studies also show that while sexual violence, unfortunately, affects about 30% of women in the non-autistic population, those on the spectrum are two to three times as likely to be victims of abuse, coercive control, and manipulation. This is due to the fact that autism can be characterized by difficulties in social communication—such as decoding hidden intentions, recognizing when the behavior of others is concerning or inappropriate, and understanding implicit communication and elements of context.

ASD Markers:

Stimming – Physical stimulation or coping mechanisms that I may not realize I’m doing to comfort myself and self-regulate. I unconsciously wiggle my toes to fall asleep and have always walked on my tiptoes when barefoot because it feels better than putting my feet flat on the ground. I’m constantly clicking my nails and scratching my fingertips together in conversation or deep focus. I look away when I’m trying to put my thoughts together. I move my tongue/mouth and bite my lips when I’m trying to focus. I unconsciously play with my jewelry and have muscular tics when I sing. I prefer comfy, soft, non-constricting textures.

Common autistic stimming behaviors include skin picking, repeating words, sounds, or phrases in your head or aloud (called “echolalia”), rocking back and forth, sitting in odd positions or having odd posture, walking on tiptoes, and playing with hands or hair.

Social – Very shy in school. Bullied. Hard time processing more than one conversation or stream of information at a time. Fear of being perceived, “seen,” or sharing my gifts and ideas. Always expected everyone to be honest and follow the same rules. Extreme moral compass and specific interests in social justice. Trouble with eye contact and physical contact if I'm at all uncomfortable. Levels of agoraphobia. Trouble socializing altogether if I don’t feel ready for it. Being on my phone can be extremely anxiety-inducing if I’m not in the right headspace. Prefer to be isolated and left alone to work most days.

I like to have as much information, context, and detail as possible in business. Rigid in plans, can come off as controlling, highly activated when plans are changed last minute, when my time isn’t considered, or when I don’t have a chance to prepare. Love to research and learn. Tend to overshare about topics I’m passionate about, which can come off as being a know-it-all. Very blunt and straightforward sometimes, which can come off as harsh. I have trouble picking up on certain sarcasm and jokes. Specific sense of humor—hard time laughing at things I don’t find funny.

I have a mean RBF (resting b**** face), but I don’t ever mean it, lol. I’ve noticed I have less facial expression now that I am attempting to mask less—unless I’m genuinely interested or excited about something. Over the years, I’ve learned that I’m much more comfortable and calm in small groups or one-on-one settings than in larger ones. Crowds can be overwhelming—I feel the need to stay in one secure spot or retreat to a quiet space often.

Executive Function – Avoiding physical demands like eating, going to the bathroom, and self-care—especially when hyper-focused on a task or project. For some, this can present as pathological demand avoidance. Avoiding tasks that aren’t mentally stimulating until they get overwhelming. Over-preparing as a means of control and self-preservation. Intolerance of uncertainty. Losing track of time during deep work or focus. Needing my environment a specific way or rearranging it often.

Pattern seeking and recognition—for me, it feels like hyper-empathy and hyper-awareness for those around me, picking up on energetic shifts and a sixth sense about patterns in music and melody. People on the spectrum are often virtuosos at a very young age in something creative. As far back as I can remember I was able to mimic or repeat back a phrase or melody accurately after hearing it once.

Long- and short-term memory loss, except for lyrics and melodies. I have very few childhood memories that aren’t from photos or videos. Extreme trouble with names, faces, and retaining information in active or busy environments. Work best alone in an uninterrupted space to allow complete thoughts to flow—otherwise, I lose them.

Sensory – Issues with competing sounds, triggering or intense sounds (Misophonia). The sound of people eating or chewing makes me physically uncomfortable. Will hyper-focus on certain invasive sounds and can’t calm down until I get away from them. ASMR is the absolute worst to me—like nails on a chalkboard.

Bright daylight or overhead lighting is almost blinding. The first thing I change when I enter a room is dimming and/or changing the color of the lights or moving them lower in height. Sometimes, I need white noise, a fan, or a sound machine at night because silence means I can hear everything and won’t sleep.

Tags on clothes or bedding, shirts or jewelry too tight on my neck, or tangled sheets and jewelry send me into a full meltdown. The texture of coconut. Extreme sense of smell. Germophobia—often too conscious of everything that’s been touched and washing my hands constantly. Water running down my arms while washing my face is a trigger. Being COLD is the worst—extreme temperature sensitivities. I excessively shiver in situations others may not find extreme, but for me, it feels like death from the inside out.

Masking — I never knew it wasn’t normal, but I learned to suppress, hide, and channel my emotionally raw or “unfavorable” behaviors early on as a child and to mimic those around me who drew positive results from the world.

Looking back, I channeled everything into music and writing, but instead of horses and Prince Charming, I was overflowing with concepts far beyond my age—about pain, loneliness, betrayal, and loss. I was a depressed, intuitive, and highly sensitive child who didn’t know it or have the resources I needed to cope with what was sometimes a rough upbringing. I learned that perfectionism and people-pleasing would help me keep the peace around me. I felt my charm and kindness becoming a strength I could use to stay in the good graces of everyone around me—being “good” kept me safe.

A small aspect of immersing myself in music, I believe, was performative—something I did to unite and bring joy to the house when things were hard. I learned to take on so much of my mother’s bubbly, extroverted personality—the center of attention, witty and quick on my feet in any situation. Always ready to perform and always well-rehearsed, as my father would expect me to be since elementary school. I kept this mask up until my 30s when the combination of a pandemic, a devastating breakup, the betrayal of a best friend, and losing my cat of 14 years to kidney disease literally brought me to my knees. I broke completely. I couldn’t eat and lost an unhealthy amount of weight, stopped responding to friends and family, and had hit real rock bottom. I decided to move out of Los Angeles to a town in the SoCal desert near Joshua Tree to be closer to my family, and have been spending intentional time taking off the mask and holding a mirror to the old coping mechanisms that are no longer helping me reach my fullest potential.

Unmasking in Adulthood — Some who have discovered they’re on the spectrum have described the decades-long struggle to fit in or “mask” as a trauma that pushed them to mental collapse—sometimes to the point of attempting suicide. When diagnosis is missed in childhood, many women can go their entire lives feeling as if something is wrong with them—like they can’t think or process properly, like they don’t fit into any particular social groups—but will continue upholding the mask until it begins to cause serious problems like mental exhaustion, stress, depression, and anxiety. If left unaddressed, this can manifest as physical illness, including autoimmune disorders, eating disorders, obsessive-compulsive disorder, and chronic pain.

For me, this has shown up as depression, anxiety, pain, loss of friendships and business, lack of structure in my diet, and low or no desire to call, text, or be social with anyone—leading to miscommunications. I’m spending time now getting to know myself outside of the mask, researching all I can about late diagnosis for adult women in hopes of becoming an advocate for more inclusive assessment tools and an easier path to formal diagnosis and, hopefully, support. I’m grieving the realizations and resources I wish my younger self had access to, while learning how to structure my life now around my new understanding.

This means allowing myself to show up as I am on any given day—not hiding—and trusting that space will be held for me by those who deserve to be in my life. I’m learning that the things I have been shamed for, or have learned to shame myself for over the years, are the very things that make me a fully functioning antenna—like my emotionally raw nature, my strong intuition, my love for music, my passion for justice and nature, my literal inability to eat animals or kill a bug, the absolute wonder and respect I feel for life and the universe and my desire to talk about it for hours, my obsession with psychology, and my daily tears about this or that because something made me FEEL.

How grateful I am to be here—to feel anything at all.

Lots of love.

Nikki

Resources:

What My Late-in-Life Autism Diagnosis Taught Me about Change | Anna Kutbay | TEDxGeorgetown https://youtu.be/5Q9iWYHH878

Springbrook's Converge - Autism Radio - Living Undiagnosed for Decades

https://podcasts.apple.com/us/podcast/springbrooks-converge-autism-radio/id1411797892?i=1000689686477