Ugh! Ugh! Ugh!!!

I went into Ian’s room first thing this morning and horror! He was standing in the middle of his bedroom floor with his head to one side, and his face held the most spastic expression you can imagine, and it was all twitching.  His face, his hands, his torso.  His body was practically vibrating with the speed of it all …..

Dear God, it was awful!

I took his face gently in my hands and tried to bring him back.

“Look at me,” I said to him, my heart twisting at the sight of this awfulness.

“Look at me!” I had to insist.

He remembered himself and his body fell still as he gazed into my eyes.  But the damage was done.  I could not unsee what I had seen. My heart was bent out of shape, and it would take a lot more than one clear look to repair it …

When we first started Ian’s therapy programme, I don’t think it was ever our intention to cure Ian, as such, but we definitely went into it with a view to moulding his behaviour into something more socially acceptable.  Rightly or wrongly, that was our aim.  If it could be done, we would do it.  I had read that the less time Ian was allowed to behave in an autistic manner, the more it would become his habit to behave otherwise.  Perhaps if we worked hard enough, behaving in a non-autistic manner would become his life-habit.

The interesting thing was that with our Ian, the changes came about really quickly.  It was almost – when he was young – as though the autism was a thin veneer and we could penetrate it if we worked with enough determination.  And make no bones about it, we were determined.

It wasn’t that I was embarrassed by Ian’s behaviour in public.  Nothing like that.  After all, I had survived Rory;  by comparison, Ian was angelic!  It was more about wanting the best for him; wanting the most for him; and this, we felt, would be more likely without the worst of the more obvious side of autism; the hand-flapping, the face-pulling, the posturing or the high-pitched shrieking.

It worked.  In fact, it worked exceptionally well.  We could take Ian anywhere with us and he would be beautifully co-operative.  At home, he was responsive, bright, clever, learning, funny, and good company.  Don’t get me wrong, he was still profoundly autistic.  He was just more there than not, more interactive than shut off, more bright light than twenty watt bulb.

That was then.

You see, if you accept that someone is autistic, and allow them to behave as they please – because they’re autistic, aren’t they, and that’s how autistic people behave – then that’s what you’re going to get.  Despite everything.

Despite all the patience.

Despite all that dedication.

Despite all the hours and hours.

This is what has happened with our Ian.  With the expectation of good behaviour taken out of the equation, he indulges in the worst of the worst.  And today, the worst of the worst is even worse because he’s older, bigger, more determined, and much further away than he ever was.

His beautiful life-habit of connectedness and clear-eyed brightness-of-spirit and responsiveness has been swept away by people who mean well but who have entirely undone what we worked so hard to achieve.

Worst of it all, I don’t think Ian is happy.  I don’t think he’s even content.

Maybe it isn’t right to insist that someone do as you say, all day, every day. But what if that brings them to a place where they can obviously start to find joy in life? And what if taking that away from them – in the interests of giving them autonomy – actually does them more harm than good, and steals that joy away?

What I’ve learned about having an autistic child is that you can’t take anything for granted.  In the long run, your special-needs child, it seems, does not actually belong to you.  What you say, and the way you do things, are apparently not as important as someone else’s methodology. You can talk the hind legs off a donkey, explaining how things are done in your family, how to get the best out of Ian, but the past – that autistic child’s past, and with it all his learning and behaviour management – no longer belongs to him.  Now, other people know better, and no matter what you say or how often you say it, they will do things their way.

And that precious brightness will fade from his eyes, even as you watch.

And you will get notes about ‘behaviour problems’ and ‘anxiety’ and ‘misbehaviour at mealtimes’ which you’ve never encountered before, and which really, really surprise you, and you don’t say anything, because you know it’s not worth it.

You know what isn’t being done.

I’ve said it before, and I’ll say it again:

Put the child first, the diagnosis second. 

If you treat him like he’s autistic, that’s exactly what you’re going to get, no matter what he can do or who he used to be.

He will be autistic, because that’s all you see.