Autism : From the Inside – Chapter Five

My first call was to the speech therapist at The Browns’ School. At our meeting, some mention had been made of regular speech therapy sessions and filled with naive optimism, I telephoned the Speech Therapist to make an arrangement for Ian to see her.

To my horror, the best that could be offered to Ian was half an hour, once every two weeks.

Obviously, half an hour once a fortnight was not going to make Ian talk. Surely this was common sense? Stunned, I found I didn’t know what to say next. How could the situation possibly have become so incredibly depressing so quickly?  We wanted to set up an intensive home programme, including on-going intensive speech therapy, every day if we could get it, not twenty-six times – thirteen miserable hours – in a whole year!

She must have heard the disappointment in my voice, because the therapist then suggested I call her sister-in-law, Tania. Tania had been one of the Psychologists at our meeting at Browns’, but she no longer worked at the school and was now in private practice in Durban and looking for clients. She had experience in working with autistic children. Perhaps she would be able to help us.

Taking Tania’s number and feeling slightly encouraged, I ended the call. No speech therapist, then, but some help, possibly.

And then I remembered Nausheen. Because Rory had had a fairly severe speech delay, we had already been involved with a speech therapist for many months a year previously.  Encouraged by my happy memories of Nausheen, I called and arranged to go and see her.

Sitting at a small table outside in the sunshine in Nausheen’s garden, I outlined our situation and explained what we hoped to do. Then I asked if she would be able to help us. Nausheen sadly shook her head. She was about to go on sabbatical and was hoping to fall pregnant. She had too many other things on her mind to contemplate getting involved in something as intensive as the programme we were trying to arrange. My heart sank. Yet another dead end.

Then Nausheen brightened and said, “Hang on a minute. Maybe …” She had remembered someone she knew, another Speech Therapist, someone she felt might actually be in a position to help us. She gave me a name and number.

Regretfully I left. Nausheen had proved herself a special person whilst working with Rory, and I had been really looking forward to working with her again.  But now I had two names and two numbers. It was a start.

Suddenly, instead of a great black nothingness, there was a pinprick of light at the end of the tunnel.  

Neil and I set about redecorating a small spare room, which would become our therapy room. I painted it white from top to bottom. A plain colourless box. No pictures, no ornaments, no distractions.

Catherine Maurice’s manual had, by this time, arrived from America. Within a week it had a well-worn look as I had read and re-read the early chapters to see where and how to begin.    

I had the classroom, the tools, and the determination. All I needed now was the child.

I started taking Ian into the classroom every morning. He wouldn’t sit, and he most certainly wouldn’t look at me when I asked him to. You’d have thought I was asking him to peel his own skin! But there was nothing else in the room worth looking at, just an animated me, my brightly lipsticked mouth encouraging and smiling.

After a few fidgety days, he did start to sit still for more than a few seconds at a time, and he did start to give a fleeting glance in my direction when I asked for it. Every time he looked at me when I said his name, my heart leapt, and I was encouraged to try again. And again. And again.

In other areas, Ian was making minute steps forward, too. I was determined that his education would not be confined to the classroom but would envelop his entire life.  Expecting great things and sensing that it would be all too easy to forget where we had started, I began making notes of all the small improvements as they happened –

28th February 1999 – Taught Ian to tap the seat of the swing to show me what he wants.

5th March – Ian began to use pictures on the fridge to indicate that he wanted food.

10th March –  Ian took his plate of food from me in the kitchen and carried it through to the dining room and set it carefully on the table. 

18th March –  Ian built a four-barrel tower.

19th March –  Ian took his shorts off by himself.

20th March –  Ian built a seven-block tower.

22nd March – Ian imitated me for the first time.  He also helped me remove his t-shirt.

24th March – Ian climbed into his car seat on his own.

31st March – A block fell to the floor and, without prompting, Ian picked it up and put it back on the table.

1st April – Ian climbed out of the car, entirely on his own. Ian responded to “Show me horse” by reaching out to touch a horse’s face.

3rd April – Ian starts to smile back when you smile at him.

8th April – Ian allowed me to trim his nails without fuss. [This is a big one!]

11th April – Ian responds to “Show me dog” by reaching out to touch a dog.

12th April – Ian participated in the preparation of his juice, taking it out of the fridge, handing it to me, closing the fridge door while I poured, putting the juice back in the fridge and shutting the door behind him.

16th April – Ian completed a four-piece puzzle entirely on his own. At my request, Ian clapped happily throughout Oranges and Lemons.

17th April – Ian built a 10-block tower. I dawned on me that Ian no longer scratched or picked incessantly at his skin.

27th April – Ian imitates me imitating a cow.

29th April – Ian consistently imitates a vocal rhythm. Ian participated in a game of “Put on hat,” laughing and chuckling, and displaying appropriate turn taking.

Individually these might seem such small achievements, but to us, they were huge. Each event was a ‘first’ and was celebrated. 

Ian’s education had made a very promising start.

Addendum to Chapter Five –

Whether I do it here, or later, somewhere along the line I am going to have to explain our approach.

We didn’t go into this therapy programme to ‘cure’ Ian of his autism. We already knew that wouldn’t be possible – or appropriate. However, we did go into to it to deliberately modify his behaviour.

Partly because we lived in South Africa (where we knew Ian’s future would be severely impacted by his autism) and partly because we wanted to give him an opportunity to be the best version of himself he could be – and linking to us in a meaningful way would help him achieve this – we went along the therapy route with guns a-blazing.

At this time, there was no literature by adult autists explaining the (potential) trauma of an intense therapy programme, or the pain some have experienced by being forced to give direct eye contact. We had no frame of reference for things like this, one way or the other. We did what we believed was right – on the strict understanding that we would at all times be guided by Ian. If he showed any sign of distress, therapy would be stopped.

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