Invisible Disability Isn't Imaginary

(...and just because you can see the behaviour doesn’t mean you understand it)

Before my kids were diagnosed, I didn’t understand disability. Not really. I thought disability came with obvious signs—crutches, wheelchairs, hearing aids. Something visible. Something measurable. Something understandable. 

I didn’t think it meant a child flipping furniture and fighting like a soldier under attack in the middle of a classroom. I didn’t think it meant teachers calling me because someone had tried to restrain him and he reacted like his life depended on escape. I didn’t think it meant sitting on the floor of the school office, trying to shield him from curious eyes while he screamed from somewhere deeper than I knew kids could scream.

But that’s the thing with invisible disabilities: they’re only invisible if you don’t know what you’re looking at.

PDA: Persistent Drive for Autonomy

Cheese is autistic, with a PDA profile. Officially it stands for ‘Pathological Demand Avoidance,’ but what it really is? A Persistent Drive for Autonomy.

It’s not “oppositional.” It means his nervous system can treat everyday requests like threats. The drive to stay in control of his body, space, and choices is so strong that even “put on your shoes” can feel like being pushed off a cliff.

Put your shoes on.

Sit in the car.

Let the doctor check your ears.

Say hi to Grandma.

To you, those sound reasonable.

To him, those are cliffs.

And when he’s backed into a corner, physically, emotionally, neurologically?

He doesn't freeze. He fights.

His whole body reacts.

His legs cramp.

He screams.

He lashes out.

He runs.

Or he fights the closest thing that feels unsafe. Even if that’s me.

And still people ask, “But he’s fine sometimes, right?”

Let’s talk about masking (even though we never saw it)

Chalk and Cheese never masked. Not once. They didn’t hold it in, save the meltdown for home, or try to “pass.” They couldn’t.

But we know families where kids do.

We know the parents who are dismissed because their child “seems fine at school”—only to come home, collapse, scream, bite, withdraw, or self-harm. The kind of post-school meltdowns that leave you emotionally bruised, while schools, doctors, family and friends say, “They were fine with me.”

Masking is a survival strategy. But it comes at a cost—burnout, anxiety, identity loss. And just because a child can mask doesn’t mean they’re coping.

And just because ours couldn’t mask doesn’t mean their behaviour was any less valid.

What does an invisible disability feel like?

Think of the worst stress you’ve ever felt.

That moment your stomach dropped.

Your heart raced.

Your chest tightened and you thought: “If one more thing happens, I might actually break.”

Now imagine feeling like that before breakfast.

Your body is hot and flushed.

You can’t think straight.

Everything feels too loud, too fast, too much.

You can’t filter sound

Can’t tune out the flickering light.

Can’t sit still because your body won’t let you.

You feel cornered. Trapped.

You can’t process what’s being asked of you.

All you know is you need it to stop.

Your brain shouts: danger.

But your environment says: comply.

That’s what an invisible disability can feel like.

It’s not attitude. It’s neurology.

The response isn’t a choice. It’s a reflex.

A defensive, desperate, primal reflex to stay safe in a world that doesn’t feel safe.

I Didn't Understand—But He Did

I’ve been there—gripping the steering wheel while my child screams in the backseat.

Legs cramping.

Yelling in pain.

Begging me not to go.

I’ve pulled over, shaking, trying to figure out what was going on.

I’ve driven to paediatrician appointments only for him to refuse to get out of the car.

I’ve sprinted after him mid-specialist appointment—one we’d waited nine months for—while the receptionist chased after me for payment.

Because he bolted.

I was the one explaining him away, not seeing how much it cost him.

In appointment rooms, with professionals, in front of him.

It started when he was just nine months old—before he could speak.

Before I knew better. Before I understood.

I didn’t realise how much he was absorbing, or how deeply it was hurting him.

But I do now.

And I would give anything to undo those moments.

But I can’t.

All I can do is get it now.

And not go back.

If you’ve never lived it, I don’t expect you to know.

But I hope you’re still reading. Because here’s the thing:

You might meet a child like Cheese one day.

You might be the teacher. Or the neighbour. Or the person standing in line at the supermarket while a parent apologises for the noise.

You might want to say something helpful. Or something judgemental. Or nothing at all.

Whatever you choose—choose compassion.

Because you never really know what’s going on underneath.

Because invisible doesn’t mean imaginary.

Because if you saw the world through my child’s eyes, you’d be overwhelmed too.

Thanks for reading.

I’m not here with all the answers, just sharing the messy middle as we figure it out.

If this topic resonated, here are a few more stories, reflections, and hard earned lessons you might like:

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