When behaviour becomes a distraction: what autism research keeps getting wrong

We’ve been looking at the wrong problem

Last week, I attended the IASAT conference -a gathering of researchers and clinicians exploring the role of affective touch in human development and healing.

Although the research on affective touch is fairly new; it's one that I actually believe has the power to change autism care. Why? Because it doesn’t start with behaviour. It starts with sensation. With what we feel. With how we register the world through our skin and body.

To me, that’s exactly where the conversation on autism should start.

The tactile impairment no one seems to talk about

In my experience, observation and study, I have found that tactile processing issues are not a side note in autism. They’re the core of it.

The way we - autistic people - register touch is not subtle.
It’s not a quirk.
It’s not “sensitivity.”

It’s a deep neurological difference which distorts how we feel touch, pressure, pain, temperature, comfort and even human connection.

And yet, somehow, this is still completely ignored throughout autism research. Which talks endlessly about behaviour, coping skills, support needs, etc. But skips over the body. Current research skips over the sensations which may be steering those behaviours in the first place.

That's like standing in a burning building and only measuring how loud its residents scream.

Behaviour ≠ Problem

A new research review by Bottema-Beutel et al. (2025) made this painfully clear. They examined how “problem behaviour” in autism is defined and measured in research.

The results of which are -to put it bluntly- bleak.

Most studies define a behaviour as “problematic” based on how disruptive it is to others.
Not on how much distress the autistic person is in.
Not on what a behaviour might be communicating.
Not on whether a behaviour makes sense in context.
The frame through which "problematic behaviour" is solely viewed as something to reduce or eliminate; regardless of its function, cause or emotional meaning has shaped the entire field of autism support for the worse.

What it did to me

I’ve lived the consequences of that framing.

I was never asked how I felt, instead I was asked why I was acting a certain way. I learned quickly that how I acted mattered more than how I felt. So I masked. I adapted. I stopped trusting my body. Increasing the disconnect that was already there. It nearly broke me.

This is what happens when you’re seen as a collection of behaviours, not as a person in distress. This is what happens when touch aversion, sensory flooding, pain and exhaustion are treated like quirks instead of signals. No wonder so many of us are traumatised.

Why I read the research anyway

I’ve always said autism research doesn’t speak for us autistics.

But I still read it.
I still go to conferences.
I still ask questions.

Because I’m searching for research that finally aligns with what we experience. Because I want to influence what is studied. Because I’m done with the narrative that says, “this is just how autistic people are.”

No.

This is how anyone would react to chronic sensory confusion.
To not being believed.
To being taught to gaslight your own body.

Autism is not a trait. It’s a reaction.

I don’t believe autism is just an identity or a 'different' way of being. I believe we are perfectly normal human beings reacting to abnormal amounts of internal noise and turmoil.

What people call “autistic behaviour” is often:

• a response to pain

• a cry for regulation

• a way to survive sensations no one else experiences

The fact that this isn’t the focus of every single autism study.
That’s the real problem.

Let’s be clear

This isn’t about “understanding behaviour.”
It’s about understanding why the behaviour is happening at all. And that requires a complete shift in how we understand and study autism. Because we are not here to be measured, managed or modified.

If you support autistic children -or research them- please start here:

Don't just studying their behaviour.
Study their sensations and experiences.

Until we do that, we’ll keep missing the point.