Autistic kids are often “managed” as though their issues are behavioural. I strongly disagree with this approach and my aim is never to make Zip “stop crying” or “stop making a fuss”. My aim is to solve the problem which is distressing him.

Let me show you what that looks like. From when he was very little Zip would cling to me and whine and chant “it’s okay it’s okay it’s okay” in certain predictable contexts. When I was carrying him down a stairwell with a corner in it. When a big dog passed us.

And I realised he was using echolalia to soothe himself because “it’s okay” is what his father and I would say to him when he was frightened.

So I switched to saying “I’m scared” during those times. And then he did too.

I have never told him that it’s not scary or that he isn’t scared. I focussed on giving him the tools to communicate his fear.

Now a couple of years later he is going through a phase where whenever we need to go anywhere or do anything he says “no no no!!!” And anywhere from resists to outright objects to getting ready and going.

So I spent some time supplying him with different phrases.

All autistic people are different and Zip’s presentation involves a language disorder (different to a language delay - he is picking up language differently and in a different order than typical kids, not just more slowly) so it’s not as simple as just... asking him what’s wrong.

But after some months of this going on his objection now involves him running away from me and saying “I’m too scared to [go to school]”

Again I never “reassure” him by telling him that it isn’t scary. Or that he isn’t scared or that he will have fun.

So this morning when I told him that it being Tuesday we were going to go to ECDP (early childhood development program - special needs school readiness program) he said “no! I am too scared to go to ECDP!” But the great thing about today is that he was very calm when he said it.

He was communicating his fear about going before and without being completely overwhelmed by it.

So when we get to this point I have been supplying him with options for why he might be scared or what he is scared of. I’ve been doing this for a week or so now.

I wrote on his mini whiteboard “I’m scared because...” and then some options below

“I might get hurt”
“Something bad might happen”
“I don’t know what will happen”

And he pointed to the third one and said “this one”

So then I wrote out “I’m scared because I don’t know what to expect” and put it up on the wall so he has it and can see and memorise it.

And this is important because it matters to me to know that it isn’t because it’s distressing to be there.

But this has been a long process to get to this point where he has the words to tell me what he is feeling before he is overwhelmed by it. And that has only worked because I have not invalidated or dismissed those feelings.

And this is important: it is a LOT of work. And it’s really hard. And I’m barely functional in my life because I’m spending so much energy helping Zip regulate.

But I don’t think it would be “easier” (esp for him!) if I somehow used behavioural conditioning to make him comply.

But it’s extra hard when so much of society and professionals act as though... me not using behavioural conditioning to get my son to appear calm is the reason that he behaves the way he does. He behaves the way he does because of what he is experiencing.

And no amount of bribery or punishment will change how overwhelming and distressing he finds the world.

But I believe that knowing what he’s specifically distressed about at some specific time and doing what I can to mitigate it does change how distressing his experience is.