Discovering My Daughter’s Diagnosis of Autism

Since beginning my journey to become a speech-language pathologist, I was always drawn to autism.  When interacting with autistic children, I felt both connection and curiosity.  I was comfortable sitting in the silence and recognized subtle communication attempts.  There was always more to learn about the autistic child sitting in front of me.

It wasn’t too long ago that upon hearing the word autism, I immediately pictured a little boy stimming and using echolalia, but more recently my understanding of autism expanded to include what I now know to be highly anxious females who mask their autistic traits.  

The journey that led me to this point is a personal one that began with my daughter.  My daughter thrived on consistency and routine from the moment she was born.  She was the infant that became upset if daddy read the bedtime story instead of mommy.  She was the toddler that struggled for weeks after changing teachers/classrooms at her daycare.  She was the preschooler who needed to know the daily plan every morning.  At first, I didn’t think much of this because this is exactly how I was when I was little – and I wasn’t autistic…

Then, seemingly small things started to get hard for my daughter.  The lukewarm bathwater felt scaldingly hot, the flushing of the toilet was unbearable, and almost every food was “too spicy.”  I decided to have my good friend and occupational therapist, Stef Logue from SimplyOT, evaluate my daughter to see what we could do to support her.  Not surprisingly, there were sensory processing differences, including tactile defensiveness, sensory avoidance, and sensory-seeking behaviors.  

So, our journey with occupational therapy began.  While my understanding of my daughter’s sensory needs deepened, I started noticing heightened anxiety and difficulty within social settings.  The only times I saw my daughter interact with other children was during playdates with close friends – and she seemed comfortable navigating those social interactions.  It wasn’t until I took my daughter to a classmate’s birthday party that I noticed she was different.  While the other kids seamlessly played tag, my daughter didn’t understand that she should run with the group.  While small groups of girls gathered to create imaginative play schemes, my daughter preferred to jump on the trampoline with the boys.  While the other kids separated easily from their parents and played with each other independently, my daughter needed to have me within eyesight.  

Our occupational therapist began sharing how much my daughter seemed to be “holding everything in” at school, which explained the intense meltdowns we were dealing with after school and on the weekends.  Why hadn’t we heard anything from her teachers – because my daughter was compliant, never causing issues, hiding her autistic traits like a little chameleon.  The anxiety became worse, getting to the point where I couldn’t leave my daughter’s sight within our home and getting to school late resulted in questions like “What if everyone looks at me when we get there?”  There were a lot of what if questions – what if you forget about me, what if they laugh at me, what if no one wants to be my friend.  I remember this sort of internal dialogue going through my mind as a child.

I had recently reconnected with an old colleague, Lucas Harris who owns Lucas Learning Lab.  Lucas is autistic and helps families support their neurodivergent children in affirming ways.  I needed Lucas’ help.  Lucas was the one who opened my eyes to the female presentation of autism and my eventual late diagnosis as an autistic female.  This was life changing for both myself and my daughter.  

I decided an evaluation and diagnosis was necessary for my daughter.  She needed to know why she was different.  She needed to know that her autistic brain is the reason she has so many strengths – musical, artistic, empathetic, inquisitive, and intelligent – and at the same time, her autistic brain is the reason other things are hard.  

We were lucky enough to see Casey Okoniewski, at COko Psychological Services, who understood the female presentation of autism.  With my daughter’s autism diagnosis, I felt relieved and heard, but it was only the beginning.  I had to figure out how to talk to my daughter about her autistic brain and how to advocate for her as she prepared to enter kindergarten, but that story is for another blog post.