I Knew Something Was Different. I Just Didn't Know What.

Part 1: Our Path to an Autism Diagnosis

Over the next two newsletters, I'd like to share the story of Sophie's autism diagnosis and what happened next. It's a story I've told pieces of over the years, but never from beginning to end. My hope is that somewhere in our journey, you recognize a little of your own.



I've been reflecting on the path to Sophie's diagnosis lately, and it wasn't a straight line. It rarely is.

Looking back, I can see the pieces now. At the time, they felt completely unrelated.

It started in elementary school. I questioned teachers about her struggles. Math was brutal. Her spelling was next level. The answers were always reassuring.

"She won't need to spell. Spell check will take care of it."

For math, we hired tutors who patiently tried to help her make connections, but very little stuck. I knew something wasn't clicking. I just couldn't figure out what.

It wasn't until fourth grade that I learned I had to ask for testing. Teachers

couldn't suggest it. One quietly pulled me aside and whispered that if I wanted answers, I needed to push.

The testing showed high processing speed, but little else. We still didn't have an explanation.

At home, there were moments that made me pause.

One day Sophie walked into the room, laughed, and asked, "Did that sound right?"

I remember thinking it was such an unusual question. I tucked it away without realizing how important it would become years later.

Friendships were hard. She had few close friends and naturally gravitated toward adults. I chalked it up to being an only child. Her teachers adored her. She happily cleaned classrooms, organized materials, and found every excuse to stay with the adults instead of joining her classmates.

I kept asking questions.

The answers never seemed to match what I was seeing.

Then COVID arrived.

Almost overnight, every coping strategy Sophie had built disappeared.

School went remote. Theater, the place where she truly came alive, shut down. She floundered.

I started calling everyone I knew looking for ideas. Eventually, she began therapy for what we believed was social anxiety.

At the same time, something else was happening.

Meltdowns began to appear, although I didn't know enough then to recognize them for what they were. My husband and I found ourselves walking on eggshells, never quite sure what might set one off.

After about six months, her therapist called.

"I don't know what's going on with Sophie anymore."

She recommended an outpatient psychiatric program.

The pit in my stomach was enormous.

What could this possibly mean?

Around the same time, Sophie's pediatrician prescribed an antidepressant to help with her depression and low mood. When the dosage was increased, everything changed.

She developed akathisia, a rare side effect that caused her entire body to shake uncontrollably. We made two trips to the emergency department in two nights. Because of COVID, the only space available on the second night was what was essentially a storage closet.

I spent the night sitting beside her, watching her finally rest after receiving IV medication.

The next morning, the attending physician got down on bended knee in front of me, smiling as he assured me he wasn't proposing. Then he looked me in the eye and promised they would get to the bottom of Sophie's shaking.

It was the first time in a long time that I felt someone truly saw us.

The recommendation was clear: stop the medication, find a psychiatrist, and start over.

The psychiatrist we saw immediately recommended another SSRI.

Everything in me said no.

For the first time in this journey, I trusted my instincts. We chose not to follow that recommendation and walked away, despite receiving a letter outlining his concerns about our decision.

Not long after, things finally began to make sense.

On the first day of the outpatient program, Sophie and I met with two psychologists. They spent more than an hour talking with her.

Three days later, we sat together at our kitchen table as they shared their conclusions.

Autism.

Sophie was elated.

Finally, there was an explanation for why life had always felt harder than it seemed to be for everyone else.

I felt something very different.

Shock.

Relief.

Grief.

And shame.

How had I missed this?

I was a good parent... wasn't I?

With college only eighteen months away, we immediately began searching for a neuropsychological evaluation. Every office I called quoted wait times of nine to eighteen months.

It felt impossible.

That's when I discovered what became my unofficial motto for navigating healthcare: being persistently persuasive with a smile on my face.

I learned to ask one more question. Make one more phone call. Thank the person on the other end of the line. And when the answer was no, politely ask, "Is there anything else you can suggest?"

It wasn't glamorous, but it worked.

Eventually, we found a psychologist who could begin testing within three weeks, first virtually and then in person.

Two weeks later, the evaluation confirmed what the outpatient team had already recognized.

We finally had an answer.

Years of questions suddenly had a name.

Receiving Sophie's diagnosis wasn't the end of the story. In many ways, it was the beginning.

In my next newsletter, I'll share what happened after we finally had an answer. I'll talk about the overwhelming rush to "do everything," the professionals who dismissed our concerns or steered us in the wrong direction, and the lessons I wish someone had shared with me sooner. Because looking back, I've come to believe parents don't need all the answers at once. They need enough clarity to take the next right step.