What I Once Believed: Forty Years of Changing My Mind

Early in my career, I used to stand in front of rooms full of parents—though, in those rooms, they were usually mothers—and tell them that autism affected about 1 in 10,000 children.

I believed it. It was the number I had been given, and I repeated it with the confidence of someone who thought she understood the landscape.

Today, the CDC estimates that about 1 in 31 eight-year-old children in its monitoring communities are identified as autistic.

That number is not a simple measure of how many autistic children exist. It also reflects changing definitions, broader recognition, and who gets access to evaluation and identification. But the distance between the number I was taught and the number we use now still tells a story about how much the field has changed.

The prevalence figures are not the only things that have changed over forty years of this work.

I have changed too.

Slowly. Not always comfortably.

I have spent a career revising what I thought I knew about communication, behavior, autistic and neurodivergent people, and my own instincts. This is some of what I once believed—and what I believe now.

Where I started

I came into this field with wide-eyed enthusiam and a deep commitment to helping people communicate.

I was passionate and motivated, and I was trained in the only framework anyone offered me at the time: a deficit-based one. Autism and disability were understood as collections of problems to be fixed, gaps to be closed, behaviors to be reduced.

I did not question the frame because I did not know there was a frame.

It was simply the water I was swimming in.

I want to be clear that I was not careless or uninvested. If anything, the opposite. From the late 1990s through the early 2000s, I worked for a decade as an autism consultant in a large school district, and I took that responsibility seriously.

I trained in TEACCH. I trained in ABA. I trained in Verbal Behavior. I studied DIR/Floortime. I sought out the most respected approaches of the era and learned them well.

So when I describe changing my mind, I am not describing an outsider throwing rocks at a field she never belonged to.

I am describing someone who was deeply inside the work—credentialed, committed, and trying hard to help—who kept noticing that something did not fit.

Then: Compliance first. Now: Regulation first.

I began in a segregated school for students with disabilities, and some of what I witnessed and did there stays with me.

I remember putting Pringles cans over preschoolers’ arms so they could not bring their hands to their mouths. I watched colleagues spray water in a child’s face to stop him from screaming.

At the time, I believed these were interventions.

I believed they were help.

Years later, about a decade into my career, there was a second-grade boy who had trouble keeping his clothes on in class. When he stripped, we moved him to a small room with a video feed so he could still see the regular curriculum.

We called it his “office.”

He would escalate, and my job, as it was framed to me, was to calm him down and manage his behavior.

It was containment dressed up as support.

I think about that boy often.

Today, the way I would spend time with him in that room would be almost unrecognizable. It would begin with co-regulation, not correction. It would ask what his body was telling us rather than how quickly we could make the behavior stop.

It would treat his distress as communication, not as an obstacle to the curriculum.

For much of the last twenty years, I have practiced regulation first rather than compliance first—though for a long stretch of that time, I did not yet have language for the shift.

I only knew that I was trying to reach for the child’s nervous system before I reached for the behavior.

Then: The “niggle.” Now: Listening to myself.

Underneath all of it, from the beginning, was a “niggle”—a quiet, persistent sense that something was wrong.

I felt it with the Pringles cans.

I felt it in the “office.”

I did not have an alternative to point to, and I did not have permission—from my training, from my field, from the standard of practice—to act on a feeling.

So I mostly overrode it and kept going.

The single biggest change in my forty years is not a technique or a framework.

It is that I learned to listen to myself.

I started treating discomfort as information rather than noise. When something felt wrong, I let it slow me down instead of talking myself out of it.

I began offering connection before correction: through proximity, gentler pacing, fewer demands, and relationship.

The niggle, it turned out, had been right the whole time.

It just took me years to trust it.

Then: Behaviorist frameworks. Now: Developmental and relational.

That consultant decade gave me the behaviorist frameworks that defined much of the field: the structure of TEACCH and the reinforcement logic of Verbal Behavior.

I do not regret learning them, and I will not pretend they contained nothing useful.

Rigor is not the enemy.

But of everything I studied in those years, DIR/Floortime was the approach that kept resonating.

It started somewhere different: with the child’s relationships, development, and connection as the engine of growth rather than compliance as the goal.

At the time, I could not have told you exactly why it landed the way it did.

Looking back, I can see that it was pointing toward where I was already quietly headed.

I did not reject rigor.

I began to understand that rigor without relationship can become control.

DIR/Floortime gave me language for something I was already beginning to see: development does not begin with making a child perform readiness. It begins with relationship.

What never changed

The desire to help people communicate was there from the beginning.

What changed was my understanding of what communication requires.

I once thought my job was to shape a child into clearer participation.

Now I understand that communication begins with being met—through safety, relationship, language ownership, and enough space for a person’s own experience to be real.

My values did not change across forty years.

My methods had to catch up to them.

Where this lands

A few years ago, I asked a student to describe what a meltdown felt like for him.

He thought about it and said that for him, it was like a “cat attack.”

From that day forward, in our work together, meltdowns were cat attacks.

I did not correct his word or replace it with mine.

I followed his language, and in doing so I told him that his experience was real—and that he was the authority on it.

That is the whole distance of forty years, held in two words.

Once, my job was to make a child stop.

Now, my job is to ask, to listen, and to let him name his own experience.

I do not look back on that younger clinician with shame.

She was doing her best with the only frameworks she had been given. And even then, she was already listening. She just did not know yet that she was allowed to trust what she was hearing.

The people we support deserve more than our certainty.

They deserve our willingness to notice when the certainty we were given is no longer serving them.

The work of a career is not arriving at the right answer and staying there.

It is staying willing to change your mind.