Autism : From the Inside – Chapter Eleven

What struck me first and most strongly was the fact that neither the teacher nor the Special Needs Assistants expressed any interest in what Ian already knew. I couldn’t understand this. Why didn’t they ask me? I had told them he had been in an intensive home programme for several years but not once did anyone ask me what he had already learned.

To be honest, at the time I found this quite sinister.  In retrospect, their arrogance was stunning. In their minds, I was just the mother. I couldn’t possibly understand the things they knew.  After all, they had all been on Special Courses. They held Degrees! They were Masters of their own Universe!  *

I tried to be kind. They appeared, on the face of it, to be good people trying to do the best job they could, and yet … Surely, no teacher in the world accepts a new pupil without at least some idea of what that pupil already knows? Why should it be any different just because he has special needs?

I got the strongest feeling that they felt threatened by me and they seemed to be deeply secretive and protective of their teaching programme and their teaching methods.  **

I told myself I was being over-sensitive, however, and decided to give them a chance. In the meantime I would watch and wait.

———

When Ian finally started school, the teacher I had met at my interview with the headmistress was away on leave and would remain so for many months to come. In her place was a new lass; a friendlier young woman who had some experience teaching typical kids but was new to the idea of teaching autistic children. She appeared to want to listen to me and took to heart some of what I told her about Ian. As she would be in charge of Ian’s schooling, I spent a lot of time encouraging and nurturing this wonderful person, this beacon of light in otherwise murky waters.

It was thanks to her that Ian settled in well and seemed to be enjoying himself. Because he was happy, I convinced myself to back off and give him space.   

Around this time I wrote to Ian’s erstwhile tutors in South Africa –

Ian’s teacher and I keep in constant contact either through notes or discussion, about the things he’s done or not done, and how best to work at them. He’s still not being pushed adequately at school (in my opinion), and far too much allowance is made for his autistic mannerisms, which means that instead of receding, they continue in full force.

Ian is doing well enough at the unit, seeming to still enjoy it, learning as little as they will let him get away with. He gets away with a lot, with the result that he learns little!

His teacher is doing what she can but she often seems puzzled by Ian’s changeability from one week to the next, his constantly altering behaviours and his one-step-forward-two-steps-back approach to life. I’m encouraging her as much as I can, and help Ian with his ‘homework’ on a daily basis which keeps me in touch with what he’s supposedly learning, and gives me an opportunity to push him in a one-on-one session at home before his brother gets home from school and we settle down to Rory’s slightly more taxing homework.

One of the things Ian’s getting better at is colouring in – at least he seems to understand that the colour should stay inside the lines, but the downside of this is that he’s tending to use his pen in short straight strokes, which doesn’t help him when it comes to writing. In steps Mum, who makes him scribble in wild circles, which seems to improve his confidence and strengthen his pen-holding technique.

At school his teacher makes him join the dots to form a page of the letter ‘C’. At home I make him write the whole alphabet free-hand …”

However, as the months passed, Ian’s behaviour began to deteriorate almost by the week.  He had been thoroughly enjoying the freedom offered at the unit, but his clever mind was now bored, and this began to show in his behaviour.  

In the early days of our intensive therapy programme we had found that no sooner had one nasty mannerism been brought under control than another would rear its ugly head. We fought our way through them, one by one, until Ian reached a stage when he didn’t seem to need them any more. This was the time when I felt he was ‘as near normal as it was possible for him to be’, because without his autistic hand flapping, face pulling, finger twitching or posturing, he behaved like any other kid.

Now, in the absence of any intellectual challenge, any check on his autistic behaviours, and thoroughly bored at school, these mannerisms were all re-surfacing. Not one by one, but together.

But I was desperately trying to fit in to this new country, trying to accept a new way of doing things and, anxious and more than a little depressed, I started second-guessing myself. I had been patted on the head with ‘there, there, she’s just his mother’ once too often, and got to the stage where I almost believed it. I began to question whether I really knew what was best for my child. However, in the absence of any real, concrete help in which I could believe, it was easier to back off and let the professionals get on with it.

The downside of this, of course, was that Ian’s behaviour continued to deteriorate. All his oddities returned in full force, all the mannerisms, all the self-chatter, the weird facial expressions.

It seemed that at the school they regarded ANY response from Ian as a good sign, with the result that they ended up re-enforcing the wrong behaviour constantly. By way of example, I learned that he had spent a good deal of time one afternoon singing with one of the Junior Infants (they integrated once a week), repeating a phrase from one of his favourite videos – the song Everybody Wants To Be A Cat from the AristoCats. Over and over, the same lines. And when the little girl stopped singing, Ian would take her arm and sing the line to her, thereby initiating more repetition of the same thing.

Ian was brazenly self-stimming – indulging in the most wanton, unnecessary autistic behaviour, which we (the therapy team in South Africa) had taken months to diminish – and this was regarded as a coup of some sort, a ‘meaningful sharing of time’. I wanted to weep!

They worked on his reading, his writing and ‘maths’ (merely counting ‘how many?’) without concern (understanding?) for the lack of foundation for the work they did. They followed the curriculum set out for “Learning Disabled Children” (that’s disabilities across the board) and were happy that Ian could accurately trace a whole page of the number ‘1’, and read to page sixteen in his set workbook, even though he didn’t comprehend a single word of what he was reading about.

Nothing was real, nothing had meaning for Ian in the greater scheme of things. Everything we had worked so hard to achieve was evaporating, disappearing like smoke on a windy day.

Any why didn’t I say something?  How could I, of all people, NOT say something?  

I gnawed on this issue for days, knowing full well that there was no way for me to change the minds of people so set in their ways without precipitating a major confrontation, which – as long as Ian was still at school – I really didn’t want. And with the headmistress taking the ‘if you don’t like it, remove your child’ stance, it was a difficult position to be in. ***

However, when Ian came home at the end of the year with a crushingly disheartening school report – merely a list of the things the teachers had managed to get out of him, a testimony to their ‘success’ rather than a record of what Ian might have learned – I knew I had to make something happen. Ian’s behaviour had regressed even further, and I was genuinely concerned. ****

I tried to convince myself that these were good people doing their best, but what worried me more than anything was the precious months which had been wasted while these teachers stumbled around ‘teaching’ my son things he had already left far behind. And teaching them so badly that he had unlearned large chunks of what he already knew.

Something had to change.

* It wasn’t that they ignored what I might know, it was that they assumed I knew nothing. This was the first time in my life I had met people who saw my son not as a human being but as a diagnosis. He wasn’t Ian, he was Autism, and Autism was what they believed they knew. I wished the people ‘in charge’ would accept that every parent of an autistic child has read more about autism and researched more about autism than they ever will, plus they have lived with autism 24/7 sometimes for years before they even get near any help.

** Whenever I asked what they would be working on with Ian, the subject was avoided or I was just plain blanked.

*** Yes, she really did say those words to me.

**** This file was filled with pages and pages of the same three exercises, completed in the same way and with the same level of success every single day over several months. The same tasks again and again, with no progression and absolutely no challenge to Ian. I was simultaneously furiously angry and utterly depressed. I couldn’t understand how these people could not see the potential which literally shone out of my son’s eyes.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s