Autism : From the Inside – Chapter Six

Despite a complete absence of speech, I still had the strongest sense that Ian would speak, that he could speak, that somehow trauma or a severe shock would draw speech out of him. I sensed that he was so close.

Thankfully, Ian never experienced trauma or a severe shock. What he got instead was Ruth.

Hers was the number Nausheen had given me, and I had called Ruth straight away. We had a great chat on the phone, and she agreed to come the very next day. Tall and gangly, loose-limbed and delightfully relaxed, yet vibrant with vigour and energy, Ruth had short, dark red hair, green eyes behind red-framed glasses, and the widest smile I had seen in a long time.  She arrived as subtly as a tornado and, entering our house, she made a beeline for Ian. Kneeling in front of him, holding him firmly by his upper arms, she bobbed her head this way and that, trying to keep her face in his line of sight.  

“Hello Ian,” she said strongly and clearly to him. “I’m here to help you talk.”  

Ian responded to Ruth that day the same way he would respond to her on many, many subsequent days : He ran away.

Poor Ruth! It was hardly flattering. But she was thicker-skinned than that and as a speech therapist with many years’ experience dealing with adults who had suffered loss of speech through brain trauma or stroke, Ruth knew about forging new pathways in the brain. Over the following months she made good her statement and did indeed help Ian talk.

The fabulous Ruth

But on our first meeting, Ruth wanted information. She wanted to know exactly what noises Ian made and how often, and whether he had ever talked at all. She admitted she had never worked intensely with an autistic child as part of a team before, but she was more than prepared to give it a go. I told her about Ian’s made-up word, which had been a favourite of his some months previously – “Dowidat” – and Ruth was greatly excited by this because that one nonsense word proved Ian could make vowel and consonant sounds. That one made-up word proved he had the potential for speech.

When I told her about Ian’s fixation with the television guide and how he always turned the pages to Tuesday, I saw for the first time Ruth’s intense interest in the potential Ian held inside him. She went still and quiet. “You’re telling me he turns the pages by himself to find Tuesday, no matter whether he needs to go forwards or backwards, and he knows whether to go forwards or backwards?”

“Oh yes,” I assured her. “He’s adamant it’s on the Tuesday page, no matter what page you put it on. And yes, if it’s on Monday he goes forwards; if it’s on Wednesday, Thursday or Friday, he goes backwards.”  

Ruth had been holding her breath but suddenly she exhaled in a great whoosh and flung her arms wide.  

“Wow! Do you know what this means?” she cried, hopping around my lounge in excitement. “The little shit is clever!”

Our second find was Tania, who was the sister-in-law of the speech therapist we had met at The Browns’ School. She remembered Ian [from the assessment] and seemed keen to get involved in the programme. Tania was a slim blonde with china blue eyes, delicate skin and fine features.  Now in private practice as an Educational Psychologist, she agreed to make herself available to us and had the experience we desperately needed. She was also the perfect foil to Ruth.  Where Ruth was outgoing, talkative and quite mad (in the nicest possible way), Tania was reserved, calm and controlled. She agreed to work with Ian every single day, five days a week, and video footage showed that Ian always tried to give Tania his very best efforts.  

The next member of our team came via Ruth who told me about a newly-graduated speech therapist who had been one of her best students. Anita was a young Indian lass with flawless café-au-lait skin, a slender build, dark eyes and long straight black hair. Ian was fascinated by her. He also sensed her lack of experience and exploited it mercilessly, making Anita work the hardest of all. It didn’t help that as the youngest member of the team, Anita ended up with the ‘graveyard’ slot, the hour after lunch, during which time Ian was inclined to nod off. I have delightful video footage of Ian sitting in his little chair, his eyelids getting heavier and heavier, his shoulders drooping, his head beginning to drop, and Anita becoming more and more shrill, saying, “Come on, Ian! Wake up! Wake up!” waving his arms around and tickling him. Sometimes he was roused. Sometimes not and work had to be abandoned. Poor Anita. How hard she worked! She soldiered on with great fortitude despite everything, and earned all our respect.

Then we were lucky enough to find Kirsty. Our first therapists were new to the idea of an intensive home programme, but Kirsty had worked with autistic children in the United Kingdom and South Africa and was experienced in setting up home programmes for other families locally. She had taught at a Special Needs School in Cape Town, and seemed more than qualified to help us with Ian.

With fine white-blonde hair, intense blue eyes, lovely soft features, a gorgeous smile and wonderful patience, Kirsty quickly became Ian’s favourite tutor. Three times a week she sang to him, made him copy her movements as he learned Brain Gym, recited verses to him, showed him pictures, taught him to draw, and lit small candles and tried to get Ian to blow them out for her. How he tried! He would have tried anything for Kirsty. As the months passed and Ian progressed, Kirsty’s delightful husky voice could be heard cheering him on and singing his praises through the closed door of the classroom. She was the tutor Ian hugged most, and I think he quite simply adored her. Even when he was acting up and she would give him her stern look and say, “Come on, Ian. Try again.” He adored her even then.

The beautiful Kirsty

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.

Autism : From the Inside – Chapter Four

Ian was nearly three years old, hugely active, noisy but non-verbal, and isolated from the rest of the world.

In many ways at this stage he behaved exactly like a little animal – I don’t mean that in any insulting way, only that he acted like one. When taken into a new environment, he explored it in the same way a small dog might explore someone else’s house. He fossicked around. He nosed in corners. He looked, but he didn’t touch. He seemed oblivious to the humans around him, completely involved in his own mission.

There wasn’t much about Ian that conformed to typical child development except, perhaps, his acceptance of physical affection. Neil and I continued to hug him at every opportunity. (There had been a period when Ian was about eighteen months old when he tried pushing me away and refusing to be hugged, but I was having none of it. I hugged him anyway and within a couple of weeks he was accepting affection again. This has never changed.)

Knowing that we had to embark on an intensive home therapy programme, I read everything I could find. One book recommended making a list of all the things the child would do, things he wouldn’t do, and behaviours which should be targeted. This sounded like a good place to start and I sat at my computer, thinking.

What commands will Ian respond to promptly? Hmmm … I typed:

1. Out

2. No

What social behaviour will he perform correctly? Oh dear…

1.              None

What antisocial behaviour does he indulge in?

1.              No eye contact when spoken to / name called

2.              Shrieking / wailing

3.              Hitting

4.              Throwing

5.              Ignoring

Obviously our ‘little angel from heaven’ wasn’t quite such an angel …

And then I got down to the nitty gritty.  

‘Manifest Autistic Behaviour’ – i.e. what did he do that the books cited as classic autistic behaviour?

1.              Hand flapping

2.              Shrieking

3.              Withdrawing

4.              Lack of response to commands

5.              Absence of speech

6.              Toe walking

7.               Incessantly picking his skin

8.              Hitting

9.              Throwing objects.

Pretty much a full house then. 

Did he have any appropriate behaviour? 

Yes, sort of – he intermittently gave eye contact (although it was always on his own terms) and he accepted physical affection. At least we knew where we were starting from, and could pinpoint specific behaviours to target. **

And yet, within this strange, difficult, non-speaking child there lurked extraordinary talent.

Aside from his fascination with the word ‘Tuesday’; his strange visual acuity which enabled him to notice immediately when a book had been moved on one of our many bookshelves; and his ability to do puzzles upside-down – that’s picture-side down, white-side up – I discovered quite by chance that Ian was cleverer than we had ever given him credit for.   

One afternoon, I was sitting reading and Ian was playing with magnetic alphabet letters on the carpet. I looked up in time to see him placing three letters on the right hand side of the fridge door: ‘X, Y, Z’. I grinned, thought Yeah, right, and went back to my book. He then selected more letters, so, curious, I stopped reading and watched him. Deliberately leaving a space in front of the X, Ian slowly put up T, S, R and Q, backwards.

I was frozen to the spot.  

Then he filled in the U, V and W between the T and the X.  

I had forgotten how to breathe.  

Still going backwards, Ian placed the P, O and N before the Q and then ran out of fridge door. He got up, stood looking at his handy-work for a moment, and left the room.

N O P Q R S T U V W X Y Z. In perfect order.

I sat staring.

All I could think was, He knows the alphabet. He knows the alphabet! Bloody hell! He knows the alphabet BACKWARDS!”

Ian was not yet three years old.

** I will talk more about this at the end of the next chapter.

A lucky photograph, taken at the time.

(You can see quite clearly that Ian was lining up the beginning of the alphabet as well.)

Autism : From the Inside – Chapter Three

That day, after receiving Ian’s diagnosis, I got home and I went through my books. Trying to get a handle on ADHD had led to many trips to the bookshop, and we had plenty of material covering all developmental disorders, including autism. I read and nodded. It all fitted.  There was no room for doubt.  

When Neil came home from work, I told him the news. He gathered me into one of his wonderful, comforting hugs and we stood holding onto to each other, dry eyed and stunned.  

“Okay,” said Neil, taking a deep breath, “what are we going to do about this?”  

Such a small word, but it was one that held within it the strength of our marriage, the enormity of our commitment to each other and to our children. This gentle, quiet, strong, loving man said, “What are WE going to do about this?” 

We looked at each other.  

“Well,” I told him, “the paediatrician has said we should contact The Browns’ School [a school for special needs children in Durban] for a screening test and then, when we have their report, we should see a Psychiatrist at University of Natal, Durban, who will confirm the diagnosis. After that, possibly a Genetics specialist to see if there is any genetic connection, and then, who knows?”    

A great big empty hole called The Rest of His Life still had to be faced, and in truth we had no idea how to do that. 

* * *

The screening at The Browns’ School was a strange process and the first of many times we would come into contact with good people who meant well but who provided us with absolutely no help at all. It revealed an approach prevalent within the health services which would leave us, time and again, feeling frustrated, alone, and more than a little angry.

We arrived at the school, and our immediate response on getting out of the car was a deeply negative gut reaction –

“Ian is not going to go here.”

It looked austere and forbidding, far too much like an institution, even though the building was new and the windows were large and open. The gardens were well cared for and quite pretty. But there was an unsettling aura about the place, a silence that was watchful rather than peaceful, and we realised then that we were determined to protect our child from anything like this for as long as we possibly could. His whole life if we could manage it.   

After a lengthy wait while they co-ordinated the various members of their screening team, we were shown into a large room. There were toys in one corner, and a couple of chairs where Neil and I sat. There were children’s pictures on the wall, too, but the overall impression was drab, probably enhanced by the extensive area of hard-wearing office-type dull brown carpet.

Then the team members arrived and arranged themselves in a semi-circle of five chairs, an impersonal six yards away from us. There was nothing intimate or congenial about this get-together. There was a speech therapist, an educational psychologist, an occupational therapist, a remedial teacher, and the senior school psychologist, all with notepads on their laps and pens in their hands.

Ian wandered around the room exploring. Five professional heads turned to watch him. He admired his reflection in a mirror, and then went through a succession of toys, which he picked up and fiddled with, then chucked because they held no interest for him. With Ian thus occupied, the team asked us questions. I had taken my books to Browns’ with me, the relevant pages marked so I wouldn’t forget anything. I read out certain passages, and Neil and I explained their relevance in terms of Ian’s behaviour. Occasionally Ian came back to me and I played with him to keep him happy, throwing him in the air and lifting him onto my shoulder, a game we had shared many times and which always brought delightful chuckles from him.  

We were there for about an hour and then it was time to leave. Ian, now settled in this new place, didn’t want to go and became distressed when we had to insist. Embarrassed but determined, we manoeuvred him out of the building.

Back in the car, Neil and I breathed a huge sigh of relief just to be away from that room. We were both quite shaken by our reactions to the school and sat quietly in the car for a long time, just holding hands.    

After the meeting at Browns’, we met with a Psychiatrist who seemed happy to confirm what we already knew, and the next day we met with the genetics specialist who agreed that there didn’t seem to be any physical features which suggested a genetic abnormality. He was happy not to take the matter any further.

Having done the rounds of meetings, that appeared to be that. No one came forward with any bright ideas; no one offered help; no one seemed to know what we should do next. We found ourselves sitting at home staring at that big empty hole called The Rest of Ian’s Life, floundering. 

Weeks went by. Nothing changed.

Then I came across Catherine Maurice’s book, Let Me Hear Your Voice, in a nearby bookshop. It was expensive and after a brief glance I had put it back on the shelf. I browsed around the shop, went back to the book, picked it up, and looked at it again. Somehow I knew this was the book we needed. I decided to buy it. 

It was only after I had read it from cover to cover that the enormity of what we faced really sank in. Alone in the spare room with the finished book in my hands, the numbness I had been feeling deserted me and I howled silently, tears pouring down my face.  

“My son is autistic … my son is autistic … my son is autistic…”

I couldn’t stop the words ricocheting inside my head.  

On and on I cried, alone in that room, until my fighting spirit reasserted itself. I may have been wounded but I was not defeated, and the message contained in the book I had just finished was truly inspiring. Here was a woman who had fought the fight, and recorded the process and her thoughts and feelings. It was an amazing book and hugely encouraging. When I emerged from the spare room I said to Neil, “You have to read this. Now.”  

He read the book in one sitting, and then we sat down together and discussed how we were going to do what we now knew we had to.  

Within the written report from The Browns’ School there had been one sentence, which stood out from the rest of the report. It had been written by the special needs class teacher, and said, “I suspect Ian has the potential to learn.”  

This one single sentence was what we clung to, because we believed it absolutely.

The final page, showing the sentence we clung to.

Autism : From the Inside – Chapter Two

But I must go back a little further.

Neil and I met at a wedding in Durban, connected instantly and, as I lived 1,000 miles away in Cape Town, courted by letter and telephone call. It seems hard to imagine today, I’m sure, with all the advances in technology that have taken place over the past twenty years, but it worked for us. We met in April, were engaged by July, living together by September and married the next January. Already in our thirties, there didn’t seem any point hanging around and besides, it was most definitely meant to be. Our first son, Rory, was born just over a year later.

Rory was a very ‘finished’ baby. He never really looked newborn. He had golden skin, black hair and black eyes that observed the world from the very first moment they opened. I came from a family of fair-skinned, blonde, blue-eyed people and I somehow imagined that my child would look the same. He was like a changeling to me. After that difficult birth, it took me three months to bond with him. To this day I remember the exact moment:  a 2am feed, lying in the near-darkness with this solid lump in my arms, looking at his round cheeks and rosebud mouth, and suddenly feeling overwhelmed with love for him.

When Ian arrived Rory was 18 months old, and he was delighted with his sibling. However, for us, those were the easy days. As he grew, Rory became more and more difficult, and as he approached the ‘terrible twos’ his tantrums grew into the stuff of legend. He could be heard screaming from one end of the shopping centre to the other. And he couldn’t be reasoned with, distracted, cajoled, or loved out of it. When he went over the edge, he was in freefall.

It is extremely difficult to maintain a loving relationship with a spouse in the face of that. As the sparks flew off Rory, it was hard for Neil and I not to be infected by his anger. Sometimes we just sat holding hands, too exhausted to speak. I remember wondering what on earth I had done in a past life to deserve this. Rory destroyed everything in his path, found it impossible to sit still even for a mere moment, fiddled with everything he could reach, and he hit, bit, toe-walked, and screamed.

Throughout this difficult time, the person who understood best was my mother-in-law, Rory’s gran. Her first son – Neil’s older brother – had been the same as a young boy, and sharing ‘war stories’ with someone who truly understood was a great help to me. But it wasn’t enough.

Finally, when Rory was two and a half, I went to a paediatrician, sat exhausted opposite him, and said those few words I never imagined would come from my mouth : “Help me. I can’t cope with this child.”

He sat back in his chair and watched Rory fiddling his way around the room.  

“Have you heard of ADHD?” he asked me.  

Yes, I had.  

“Well, your son has it,” he said.  

“Okay. What do I do?”

“Medicate,” he replied.  

“Goodbye,” I said. And I grabbed Rory’s hand and walked out.

A week of hell later, I was back with Neil.

“Talk to us,” I said.  

This gentle doctor then said words to me I have never forgotten and that became the mantra by which we lived from that moment on.

Life lesson number one: “We need being happy to become Rory’s life habit.

It made absolute sense. His life habit. How perfect.  

So we medicated, and within a week our lives changed. It sounds so melodramatic today, but it was true. Within that first week, I heard Rory laugh – something I hadn’t heard since he was a tiny baby – and by the end of that week we were beginning to understand what he was saying. Before the medication, Rory’s brain had been going so fast and his thoughts were so scrambled he couldn’t form coherent speech. On medication, the gibberish became words.  

At last! He slept. He laughed. He learned to communicate.

Several years later I learned that the Melleril Rory had been on was no longer available for children with ADHD – certainly in South Africa – and this made me very sad. All those angry children who could have benefitted the way Rory did; all those parents whose lives could have been improved by making happy their child’s life habit… It seemed wrong to me. Oh, I am sure there were good reasons for its withdrawal and I hope something just as effective has taken its place, but it changed our lives and I felt bad for parents whose lives weren’t being helped the way ours had been. Rory was on Melleril for four years. A tiny dose, just a teaspoon in the morning and again at night. After a year and a half, I stopped giving it to him in the morning, and towards the end of four years, as the final bottle emptied, I decided to try life without. It was a success. Rory no longer needed it at all.   Happiness had become his life habit.

It wasn’t all plain sailing, of course. It never is. There was speech therapy, which Rory enjoyed, but when he was three and a half it was recommended to us by the pre-school Rory attended that he be psychologically assessed. Well, they weren’t particularly friendly about it; it was that or expulsion. So Rory attended a centre for special needs children for a proposed two-week period for assessment. It didn’t go well. He hated it there, cried when I took him and resisted going in, and before the end of the first week I knew things were going very wrong.

Life lesson number two: Surrounded by other special needs kids, my child was imitating the disturbed behaviour of other disturbed children.

I pulled him out.

The centre wanted Rory there, full time. They were quite insistent about it. I said no, and Neil agreed. We weren’t prepared to write Rory off so easily.   

Soon after that, we attended a School Expo where we wandered around, vaguely wondering what the future might possibly hold for our challenging firstborn, when I saw a stand for Roseway School (a school which followed the philosophy of Rudolph Steiner – the same as Michael Hall, the school of my own childhood). If we were looking for something different for our son, this might just be it.

Rory went to Roseway for three and a half years, from the age of four until he was almost eight, and he blossomed. There, he was accepted as the creative, determined, otherworldly child he truly was. I remember his very first day there – Rory was in tears at having to leave me, and his new teacher took him in her arms and hugged him tightly, looking at me over his head.  

“I sense a softness here,” she said in her gentle German accent, and I knew he was in the right place.

My two boys.

Rory tried valiantly to engage Ian and play with him; Ian ignored Rory completely. It was hard to watch. There was only eighteen months between them, but in many ways, Rory grew up as an only child. Ian was there but not there, an entirely self-contained unit that neither needed nor wanted the company of anyone else. They did play together sometimes, but it was more a case of parallel play, doing the same thing at the same time in approximately the same place.

When Ian’s therapy programme started, our lives revolved around that and we knew Rory felt left out. We worked hard to include him in other things. When he was home from school, and while Ian was busy with his tutors and before Neil came home from work, Rory and I baked together, and drew pictures, and made puzzles, and played with Lego and swam together in the paddling pool. To our enduring joy, Rory laughed a lot and seemed content.

Thinking now about the rest of the family, I wonder about the effect of Ian’s diagnosis on them. There was no wailing or gnashing of teeth. There were actually very few questions.  Ian was Ian, and he was accepted and loved just as he was. Perhaps there was a quiet sadness behind the scenes, but it was probably always assumed that I had the loving support I needed and that I would cope.

Yes, and (mostly) yes … although I suspect that women who cope well cry a lot in private. I know I did.

Addendum to this chapter :

It may be a relief to some of you to learn that Rory has grown up into a wonderful, even-tempered, beautiful young man. Those difficult early days are now very, very far behind us. 😊

Autism : From the Inside – Chapter One

As there are many people around the world who read this blog, but who will never be able to lay their hands on a copy of my book – sadly because it is no longer available, anywhere – I have decided to publish the chapters on this blog, one by one. And for those who have read the book, you may notice some minor changes and/or improvements which I’ve been able to make in the absence of an outside editor. 😉

So here we go … right back to the very beginning.

Chapter One

Ian was born by Caesarean section at around 2am on the morning of November 24th, 1995, in Durban, South Africa.

The Caesar was elective.

There was a good reason for this: the birth of my first child was just plain awful. That time, after hours of induced labour and many and varied efforts to push the unmoving child out into this world, I was exhausted. All I wanted to do was sleep. And perhaps if I stopped breathing and died, it would all go away.

And then I’d hear my husband’s voice in my ear – “Breathe, dammit! Breathe!” – and I was brought back to the bone-wrenching pain, and realised I couldn’t die just yet.

Later, with the Gynaecologist in attendance, things had taken on a more clinical appearance. I was no longer the Earth Mother pushing her baby easily into the world without help; I was a woman in danger of losing her life, and that of her baby, too. I remember the Gynaecologist snapping at me, “Shut up and push!”, and a variety of terrifying-looking metal implements; and then, after one final gigantic heave which ripped a primal howl from my throat, my first child was dragged reluctantly into the world.

So we wouldn’t we doing that again.

Pregnant again before my son’s first birthday, my second pregnancy was as easy as the first, and I loved it. I wanted to be pregnant forever! Nothing in the world compared to the feeling of a child moving inside my womb. It made me feel utterly complete. However, I had a nagging feeling of disquiet, without being able to pinpoint exactly what the problem was. One evening, we watched a particularly harrowing episode of ‘E.R.’ after which my husband looked at me with a terribly worried frown, put his arms around me, and asked, “Couldn’t you have a Caesar this time?”. Of course the birth of our first child was sitting on my mind! How could I not have realised this? I discussed the matter with the same Gynaecologist who remembered very well how it had been for me the first time, and it was all arranged. The weight was lifted from my shoulders and the remainder of my pregnancy was a breeze.

Ian was born in the small hours, safely, clinically, and easily. Less than an hour after he had made his mewling appearance, I was sitting up in the ward bed holding him in my arms as he slept. I looked at his perfect face, which glowed as if suffused with some inner light, and said quietly to him, “Welcome to the world, my child. You are my little angel sent from heaven just for me.”

I knew nothing about autism at that stage, of course, but Ian wouldn’t breastfeed properly – although I had enough milk to feed every child in the maternity ward – and I began bottle-feeding him when he was only five days old. I look back now and I think, How weird that he created a distance between us, even then.

Ian slept well, right from his very first night. After a first child who had only slept in 10-minute snatches for eighteen long months, a sleeping child was new to me and slightly disconcerting. 

“Should I wake him?” I asked the ward sister, having watched Ian sleeping for six whole hours.  

“Oh no,” she reassured me, “He’s doing brilliantly. Just let him sleep.” 

So I watched him some more. Mostly he slept in my arms or on my chest, fitting there so perfectly and sleeping so soundly that I never wanted to let him go.  He didn’t cry when he awoke, but woke up slowly, taking in his surroundings.  When I think about it now, I struggle to remember him looking directly at me in those early days, but then I’m sure he must have.  

I still maintain, though, that Ian was always autistic. That he was born autistic. There was never a time of regression because there was never any real progression. His milestones were on the late side, but not worryingly so. He played deaf, but we knew he wasn’t. He looked at us frequently, but on his own terms. When we played the fool he gave us a look of such contempt, we couldn’t help but laugh. He wasn’t entirely quiet but there was no speech at all.  We were convinced of one thing, though:  He was most definitely not stupid.

But by the time Ian was a year old I said to Neil, “Ian is slow”, and he hugged me and reassured me that we should wait longer and see.  

By the time Ian was two, I was asking the paediatrician some serious questions. There was still no speech at all, and Ian’s refusal to join in our lives was becoming more and more marked. The doctor’s response was that he felt Ian was heading the same way as his older brother – ADHD – although via a different path. This was reassuring in its way, but I still wasn’t convinced. 

Six months later I had had enough. I faced the paediatrician, frustrated and angry.  

“Today you will tell me what is going on with my child.”

And he sighed and said, “This isn’t my area of expertise, but I strongly suspect Ian may be autistic.”

It’s extraordinary, in retrospect, how you can hear news like this and just smile, say “Thank you”, and walk away, holding the hand of the little child for whom a life sentence has just been pronounced. 

My little angel sent from heaven. 

He still smiled and gurgled, and accepted hugs and curled into our arms like an affectionate little bear, but now everything was different and would never be the same again.

Autism: in lockdown – progress?

I was very tempted to keep Ian home, but if I can make this work, shouldn’t I try?

Ian loves his day placement for the things it offers him. What does he love best? Jacuzzi and swimming. (A real water baby, our Ian 😊)

I had picked Wednesday as a random, middle-of-the-week option – not realising that Wednesday is, of course, jacuzzi day. Set us up for problems from the off, then, didn’t I? Think, mother. Think!

So what if we try a different day instead, a day that has less exciting activities, or an activity that may soon become available? Would that work?

I go through Ian’s timetable from February and early March, and pick Friday.

There’s no swimming (Monday and Thursday), and no jacuzzi (Wednesday). There is reflexology – which Ian loves, possibly because it doesn’t require him to do anything! – but not every week, so we may get away with it.

And a café visit, which might be harder to ignore, but when Ireland goes into Phase 3 on June 18th, cafés will open again, so … problem solved.

Maybe.

First Friday this week. Let’s see how this goes.

Ian, fully clothed, takes a dip …

Autism: in lockdown

So. What can I say about Ian in lockdown?

Simply, he’s been great. Exceptional. Even easy.

(And yes, we do know how lucky we are!)

I guess it’s partly because Ian is just a really laid-back guy. Autism aside, I imagine that as a 24 year old lad, he’d be reading, or lying in the sun, or going for walks, or listening to music – pretty much what he’s doing now. Except that he’d have friends. Probably.

But trying to explain lockdown …..

“Lots of people are sick, and we have to stay well, so we have to stay home,” I said.

“Stay home,” Ian parroted, settling the words in his head.

“Yes. We must stay home. Just for a short while. We have to stay home.”

And he accepted that. It didn’t seem to phase him.

Now restrictions are being eased. He was invited back to his day placement, and I arranged with them that he’d be there one day a week, for three hours.

But Ian doesn’t understand the concept of ‘easing’ restrictions. How could he? It’s Wednesday; why can’t he go to the jacuzzi as usual?

There is frustration there. A bit of head banging at home …

“Ian, what’s wrong?” He cannot explain it, but I can make a shrewd guess.

Now we’ve been offered more – more time, more days. And that’s lovely. I really appreciate what they’re trying to do for him.

Except if I take Ian in on a Thursday, that is a swimming day, and he won’t be able to go swimming. Monday is also swimming. Friday is a cafe visit. Tuesday is Sound Therapy. None of these things can happen – for a reason Ian will never truly grasp.

So what do I do?

Do I send him in, and wait for the fall-out? The frustration, which we’re pretty sure will build?

Or do I just keep him home until it’s all over and things can go back to normal?

He must be bored out of his tree at home; surely he deserves a change of scene?

Is sending him in to his day placement – without the activities that make him happy – setting him up for something beyond his control?

Which is kinder to Ian?

Right now, I don’t know.

Wish me luck.

🍀