What is autism? What we miss when we only look at behavior

What is autism?

A brain wiring difference. A different way of being.

These are two of the most common answers to this question. But they don't really give people much (if any) clarity on what autism actually is. And, if anything, they just frustrate people who are looking for answers.

And oftentimes when someone does answer the question in more detail, it's usually something along the lines of...

It's a social communication difference... or it's a disability that comes with social communication challenges and restricted repetitive behaviors. [Insert more descriptions about each here.]

Which still often leaves people confused. (I know, because I was once one of those people.)

But I think a lot of people looking for answers are even more confused after someone explains what autism is because most definitions never address the real issue.

Which is that the outward appearance of autism and the internal experience are two vastly different things.

And the outward appearance tends to be the focus of definitions because that's how autism is diagnosed and that's what diagnosticians are able to see.

But the internal experience actually explains autism in a much more clarifying and useful way.

Example...

You see someone having a full blown, visible meltdown (crying, screaming, thrashing around)... this describes what people see. And the description of this usually includes emotional dysregulation.

But the internal experience is often intense, overwhelming, even debilitating anxiety. Which can be caused by a multitude of different things.

One of which is sensory overload. In other words, a sensory threshold being reached and the person experiencing extreme, intolerable discomfort... or even pain.

But there are MANY other reasons autistic meltdowns occur. And just talking about the outward behavior completely misses what's actually going on in the autistic brain.

And just like with this example, there are two sides of the coin when it comes to every autistic experience...

The outward behavior (which sometimes most people can't even see!) and the internal experience.

And I feel like it would be much more helpful to talk about autism from both angles at the same time.

Not just describing what people see (rigidity, defiance, obstinance, social isolation, stimming, echolalia) but explaining WHY those behaviors occur... from the perspective of the autistic person.