Neurodivergent Life

They told me I’m crazy

A life lesson about trusting your gut.

She was 2 and a half years old when I first noticed — really, sensed — that my daughter was different from her peers.

“Doctor, my daughter seems… different”

She was incredibly perceptive. Everyone commented on how her eyes seemed wiser than her age. That they appeared to take everything in, observe, analyze. Like a little scientist.

She was not a kid to run towards other kids at the playground. She started talking early, but would clam up around others.

She would dance with abandon at home, but would freeze like a deer in the headlights when I would try to encourage her to dance anywhere where there were people other than ourselves. I tenderly nicknamed her my little WB Frog (and if you immediately got this reference, you’ve just aged yourself).

She did not handle transitions well. At drop off or pick up at preschool she would go completely silent during the “handoff” time.

She wouldn’t talk at all even in a familiar situation before “warming up” which could be 15–30 minutes.

There was more, much more than I observed. All of this seemed relatable, and I empathized with what I was seeing in my child. As a child I felt the way she did, but I would force myself to push through the feeling of discomfort to meet the expectations of adults.

I knew instinctively that it would be embarrassing to clam up and not interact, not to politely say hello and goodbye, and make eye contact, or hug family friends and relatives.

I was always told that the reason I was so “sensitive” and “delicate” was due to in utero exposure to cigarette smoke (my mother did not smoke, but her coworkers did, all day, indoors), and then 10 days in the hospital after birth with infant jaundice.

I was such a sensitive child, my mother was accused of coddling me, I was labeled a “dying swan” by her best friend, who suggested my sensitivity was attention seeking, manipulative behavior that should not be indulged. They would tell her she needed to toughen me up… Now I was seeing echoes of that in my own firstborn, who had neither smoke exposure nor jaundice as a newborn.

I started reading, and there was a spark of recognition, familiarity. Eventually I voiced it out loud…

I think my daughter might be autistic

Everyone, from my mother to the pediatrician, told me I was imagining things.

My child couldn’t be autistic, she made eye contact… She might be shy, they said, but for sure “normal” (in quotation marks, because it is an ableist term that has been replaced with the word “typical” in most scenarios, definitely where neurodivergence is discussed).

I was told by everyone, including my own family, that my shy child would “grow out of it” and to stop fussing over her. They chalked it up to me being an oversensitive, nervous first time mom. Beaten down by those refutations, I started doubting my instincts. “I must be seeing things that are not there…” I almost convinced myself. But that nagging, uncomfortable sense of something important being ignored remained.

Misdiagnosis

The “slow to warm up” playdates and inability to speak during drop off and pick up did not ease once she entered Kindergarten. In fact, her silence intensified to the point I was researching “Selective Mutism” as a possible condition.

We decided on private school, Montessori, a costly option for our growing family, because I worried our daughter would be bullied at public school, like I was as a teen, and I could not allow it.

When she first started Kindergarten, she stopped talking altogether. She mostly communicated in sign language with her teachers, except for one child, a boy. I asked for an observation. We finally had a diagnosis of sorts, one we learned was not recognized: we were told our daughter was a Highly Sensitive Child.

Grade school loneliness

We moved states, she joined a new school. We had hope. She excelled academically. Teachers liked her. Still, she said she had no close friends. She alienated her classmates. They complained that she dominated play, wanted to play only certain games, awkwardly interrupted conversations. They would say hurtful things or criticize her for talking too much or being too loud, or standing too close, or standing too far. It was worst when they pushed her away and told her to figure out where she messed up. She would cry and say “how can I fix things if I don’t know what I am doing wrong…” Heartbreaking. She receded into the background, feeling defeated. During recess when other kids played, she sat by herself on a bench or the steps to the stage and read.

Middle school sadness

In Middle School the isolation intensified. Kids were meaner, they told her she was “weird”. They said hurtful things. She often felt sad. She often cried, frustrated with her inability to make friends when she so desperately wanted to connect. She kept trying, but every attempt at friendship failed. We felt helpless. Her teacher recommended that she be assessed because she was missing non-verbal cues. The at-school assessment didn’t do much. Then a friend recommended a behavioral pediatrician.

Assessment and diagnosis

After hours of questionnaires, interviews, came the proper diagnosis: ASD. And with that, the alphabet soup of ADHD, plain vanilla anxiety, social anxiety… all that.

It was liberating for our daughter to have answers, to finally be able to crack the self-code. It reframed her understanding of who she was, explained the communication difficulties, the challenge of reading people, making friends.

She was Neurodivergent, and she wasn’t alone. It was empowering to uncover this piece of who she was. There were many others, and she got to meet some of them outside of school. They were easy to talk to, broadcasting and receiving on the same wavelength.

As her parent, I was happy, relieved and frankly, furious. Years of mental anguish could have been avoided if only I had been believed and heard, rather than dismissed when she was so little. I wasn’t imagining it all after all. I vowed I would never again allow anyone to tell me to ignore my gut.

It’s in the genes

And, as a coda to her story, with encouragement, I pursued and obtained my own ASD diagnosis, at 50+. And yes, also ADHD and anxiety. Neurodiversity runs in families.

I cried when I received it. I was not the first one. There was a box of tissues on the diagnostician’s desk. She told me she’s seen this scene multiple times. Adults finally learning there was nothing wrong with them. They were simply wired differently.

After years of living as if I were a Stranger in a Strange Land (homage to Heinlein, amazing book, if you haven’t read it), observing the natives, desperately trying to fit in, I finally understood why I had to put so much effort to understand what people meant, not their words, their intent. I was so intent on understanding that I pursued Anthropology as my undergraduate degree. I wanted to know what made people tick so I could script my own interactions with them.

Now, I knew that I wasn’t broken. I was simply wired differently, and I’d passed this wiring down to my child.