Autism : From the Inside – Chapter Twelve

It was during these summer holidays that Ian attended a course of Auditory Integration Therapy, which aims to address the sensory problems such as hearing distortion and hyperacusis (oversensitive hearing). These are said to cause discomfort and confusion in people suffering from learning disabilities, including Autism. The hypersensitivities are believed to interfere with a child’s attention, comprehension, and ability to learn. “AIT is designed to improve the person’s ability to process sounds by ’re-educating’ the brain. This is done by playing electronically modified music or other sounds in which the frequencies have been changed”(1).

At first Ian seemed a little stunned by the sounds coming into his ears through the headphones. It certainly wasn’t music he would ever have heard before, and after being messed about with by the machine even less so, although he did seem happier when the New Orleans jazz track came on! However, he remained mostly silent throughout, at times almost stunned and he just sat, staring into space without moving.

Towards the end of the first week he became quite noisy, almost experimenting with his inability to hear his own voice because of the earphones. Because Ian couldn’t hear me, there was no point my trying to tell him to be quiet, so I wrote down on a piece of paper “Stop” and “Mouth Quiet”, pointing to my eyes with two fingers for ‘Look at me’, pointing to the paper for him to read the words, and then giving him a thumbs up for ‘Good’ when he quietened down again.

The speech therapist was astonished by this silent exchange of information, all of which had the desired effect, and in my head I found myself thinking Yes, my son can read, and yes, he does understand. Again, I was dismayed by the lack of understanding of the autistic mind, and the inability to see the working mind behind the eyes. “Push a bit”, I wanted to say, “You may be astonished by the results”.

For the first week, the AIT seemed to be working some kind of magic. I noticed that Ian was forming longer sentences than usual – instead of saying his usual “Juice please, Mummy” he was now saying “Ian want juice please, Mummy,” and he responded quickly and without complaint to requests which previously may have been met with some form of resistance.

However, the second week of AIT seemed to take him back to square one. In fact, he appeared to be experimenting with his autism, almost milking it for what it was worth, and there was a definite resurgence in certain iffy behaviours. I certainly didn’t appreciate the deliberate elbow into my throat, which Ian managed to deliver when I was brushing his teeth one morning. Ouch!

Ian continued to accept the headphones and sounds because he’s amenable that way, although he was keen for it to be over and he said quite clearly more than once, “Ian want ‘working is finished’ please Mummy”* – possibly his longest spontaneous unsolicited sentence yet. However, generally I felt that whatever had been achieved in that first week had been undone by the second.

Once Auditory Integration was over, our sessions returned to normal speech therapy.

During one of these sessions, the speech therapist had shown Ian an illustration of an animal with the query, “What is this?” – to which I somehow fully expected Ian to reply “Well, it’s a cardboard square bearing an infantile representation of a tiger, otherwise known as a flashcard or picture”. This rather mad thought ran through my head because I lived in a world of endless possibility with Ian, where what he actually did and what I believed he could do may not always coincide, but where the chance of them coinciding could never be ignored.

In truth, I believed that Ian stored his extensive knowledge in a clearly compartmentalised filing system, and the identification of any animal would be found in his brain in the general file “Animal”, and the information required could be retrieved accurately and swiftly by posing the alternate question “What animal?” Cautious to step forward and demonstrate, I showed the speech therapist that Ian would respond almost immediately to a question phrased this way, when he was taking up to twenty seconds to give an answer to her question ‘What is this?’

Then she presented him with an alphabet of plastic letters and he promptly set about lining up the letters to make the names of the various animals on the flashcards, one after the other : tiger, elephant, bird, lion, Cinderella … No, Ian! Focus!

Importantly, during the holidays a spark returned to Ian’s eyes which I hadn’t seen for a long time. There was a clarity in his sustained eye-contact, and I suddenly found myself loathe to send him back to the Autism Unit where I knew they would not only not notice the spark, they would extinguish it.

(1) http://www.researchautism.net/interventions/4/auditory-integration-training-and-autism

* The phrase ‘working is finished’ came from the early days when we were teaching Ian sign language. At the end of each therapy session, the therapist would say “Working is finished!” giving Ian the hand sign for ‘finished’ as they said it. Ian latched onto this, and never forgot.

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.

Autism : From the Inside – Chapter Ten

As soon as we were settled into our new home in this beautiful new country, I started collecting telephone numbers of people who may be able to help us with Ian.

My first port of call was the nearest school, which had an Autism Unit. I telephoned the headmistress there and, with some reluctance, she agreed to meet with me.

Filled with naïve optimism, I made my way to meet the headmistress of the school and the teacher in charge of the Autism Unit. This was one of the reasons we had come to Ireland, the opportunity for appropriate schooling for our son.

They were not pleased to see me. Their unfriendly faces were matched by tacit hostility towards me as I described the home programme we had in place for Ian in South Africa.  

Despite the fact that the unit was supposed to cater for six children, the headmistress kept saying it was full, even though I knew that there were only four children attending. Still, both she and the special needs teacher told me more than once that there wasn’t room for my child.  

I was puzzled and slightly shocked. I had expected them to be interested in Ian’s progress, to want to know about Ian and what he’d learned. Instead I found that they were uninterested in what we might have done and completely unimpressed by what Ian might have learned.

I somehow kept the smile on my face but left as soon as I could, pretty certain in my own mind that it was not the place I wanted for Ian. *

However, other than that school – and other schools like it, but much further away – there was nothing else. I made phone call after phone call, pleading in vain with people who should have been in a position to help me, but couldn’t. What I wanted for my child just didn’t exist. **

I ended my last call deeply depressed. I was no further forward than I had been when I started. Here I was, in a new country, knowing virtually no one, desperately needing help, and feeling very much alone.

On paper, Ireland was Nirvana for the autistic child. It soon became apparent that these smart pamphlets were almost works of fiction. 

There was nothing else for it. In the absence of something which I believed to be suitable for my son, I would have to continue Ian’s education at home, by myself.

So that’s what I did.  

I gathered together some of Ian’s books from his bedroom, an assortment of toys, plastic letters, pens and paper, and sat down with him in the lounge at the coffee table. I seated Ian on the footstool, and I sat on the couch or on the floor beside him.

I knew which words Ian could read, and so I made a ‘book’ for him combining words he knew with new words he could learn, drawing pictures and writing neatly on plain A4 paper and stapling the lot together. I placed the book in front of him and read the words on the first page to him. Then I pointed to the first word and waited for Ian to read it back to me. He did. I pointed to the second word, which I knew he could read too. I waited. He read. I knew Ian didn’t know the third word, but I pointed to it anyway and waited. Ian glanced up at me, so I read the word for him and asked him to repeat it. My finger was still pointing to the word, and it stayed there until Ian read it to me. Then we read those first three words again, and this time Ian didn’t hesitate on the third word. Yes! He had just learned something new. I turned the page and we carried on.

We worked like this every morning. Within a week, I could set aside my homemade book as Ian could now read it from end to end. We moved on to others.

With my help, Ian learned to read all his books, to write sentences, do bigger and more complicated puzzles, and spell the names of his favourite animals with his plastic letters. He seemed more than happy to work at home, and appeared content with me as his only teacher. 

His reading improved in leaps and bounds, his vocabulary was increasing almost daily and, once his work ethic was firmly re-established, he sat at the coffee table hour after hour, day after day, quite content.

This could not be forever, though. I just couldn’t see myself teaching Ian in perpetuity. So when two children left the Autism Unit at the school I had visited, and a place was offered to Ian, I rather reluctantly agreed to give it a go.

* If I was looking for enthusiasm, good energy, fun, and an upbeat learning environment, this Autism Unit was most definitely not it.

** In a perfect world, I had hoped to get Ian into a set up similar to the one we enjoyed in SA – into a group of younger children where he could benefit from acceptance without judgment, but where he would be guided by neuro-typical kids into a more ‘normal’ way of being. Young children are generally pretty accepting of another child’s oddities, before they acquire their own (adult-influenced) moral radar. But such a thing was unheard of in Ireland. I couldn’t even get Ian into a primary school class with (my) full supervision, on the premise that it would ‘distract the other children’.

Autism : From the Inside – Chapter Nine

We were finding life in South Africa a great strain. Both Neil and I worried constantly about the other’s safety, and together we worried about our children’s safety and also about their future. Many months of accumulated stress combined one day to force me to say out loud what I had for a long time been thinking: “I don’t want to live in this country any longer”, and to my great surprise Neil answered immediately, “Neither do I”.

But where to go? 

Obviously an English-speaking country was a prerequisite, but neither of us was keen on the usual choices – Australia and New Zealand, America and Canada, or the UK. English by birth, I knew that after so many years away from England I was no longer truly English and wouldn’t fit in as easily as many South Africans might have thought. In South Africa, I was obviously English; in England, perhaps less so.

When Neil suggested Ireland I was very surprised, but pleased too. Living in Durban, I had grown accustomed to an exotic, subtropical land, surrounded by strange and colourful wildlife and strange, colourful and lush plants. I sensed that Ireland, with its aura of romance and mystique, could provide, if not an equally strange and exotic life, then a comparably colourful one. The more we thought about it, the more attractive the idea became.

Neil visited Ireland for two weeks during 2001, attending interviews and having a look around a country neither of us had visited before. He returned home raving about the place!  He also came brandishing pamphlets, which he had picked up along the way, which set out the services available to an autistic child in Ireland.

We devoured these with great interest, reading with growing excitement about the number of State schools which had units specifically set up for autistic children. These promised one teacher and two helpers to every six children, and there appeared to be up to four of these schools in each area. In South Africa in the 1990s, we had been left to make our way entirely on our own. We had never imagined there could be such a variety of help anywhere in the world! Our imaginations fired up and our appetites whetted, we couldn’t wait to get there.

Lock, stock and barrel, we sold up and moved. My enthusiasm for this new venture was dampened only by having to leave behind my precious Border Collies, Meg, Queenie and Skye.

The flight to London was long, and Ian slept for only a few hours of it. Then, wide awake in the small hours, when most people had finally succumbed to an exhausted doze, he needed constant entertainment to keep him quiet. Not many would make allowance for a noisy child at two o’clock in the morning, special needs or no.  

Somehow I managed to keep him busy, going through our entire repertoire of table work, getting Ian to read, write, identify, clarify, draw and colour in – most of which he did incredibly quietly, but it meant that I had to be at the peak of my persuasive powers to keep him focused. Not easy at two, three, four and five o’clock in the morning. When we arrived at Heathrow, I was utterly shattered.  

Our landing at the airport was dreadful – we hit the runway with incredible force and I swear the plane bounced at least twice. Could this journey get any worse, I thought? Yes, apparently it could. Ian promptly vomited all down his front.  

I had no change of clothes for him and everything he was wearing was now quite disgusting.  Who carries a spare set of clothes for a six-year-old? Nothing for it but to strip him completely and dress him in my brightly-coloured, fair-isle cardigan, which reached his ankles and, buttons done up from top to bottom, made him look like a little refugee from Peru.  

It’s tough enough hanging around in an airport with a tired special needs child. Hanging around with a tired special needs child dressed in an eye-catchingly outrageous fashion takes a very thick skin. 

That day I found I had one.

Photo: Taken on the plane, during those few precious hours when Ian was asleep. Rory is drawing, and Neil is in the background, stretching his legs.

Addendum to this Chapter

What I hadn’t included in this story originally was that while we were at Heathrow Airport (in the UK), Neil disappeared. Rory, Ian and I had sailed through customs on our British passports, leaving Neil to go looking for a t-shirt for Ian.

We waited for him downstairs, but he never appeared.

I walked the entire terminal – with both children by my side, Ian still in my brightly-coloured cardigan – trying to find Neil. Backwards and forwards, backwards and forwards. There was no sign of him anywhere.

Hours later, with the time to board our flight to Ireland fast approaching, Neil reappeared, looking pale and shaken. The bastards at Customs had detained him and some officious little prick had grilled him for two hours, refusing to explain why he was being held, refusing to let me know that Neil was in custody, and refusing to make a single telephone call to verify the facts Neil was telling him.

It was an extremely unhappy experience for us all, and we couldn’t wait to catch our connecting flight out of the UK, and into Ireland.

Autism : From the Inside – Chapter Eight

With the help and dedication of this incredible team, we managed to keep our programme going for two years before our neighbourhood changed and we decided to move house.

The school Rory was attending was quite far away, and the journey there and back again, morning and afternoon, was putting a lot of strain on me. New neighbours and several loud all-night parties convinced us that our lovely quiet neighbourhood was a thing of the past, and we didn’t really want to live there any longer.  

Then our next-door neighbour asked his gardener to cut back the huge bougainvillea hedge between our properties and, unsupervised, the man cut a vast hole right through the centre. I was livid. Not only was our security compromised with a clear view down their driveway to the street, but Ian now had a perfect bolthole to get through when he next wanted to go walkabout. I pointedly patched the hole with a large ugly cardboard box, and that night I told Neil we were moving house. Tomorrow!

We were lucky enough to find a perfect house in Kloof, halfway between the old house and Rory’s school, and still conveniently placed for Neil to get to work. We moved in during May 2000, and were extremely happy there. We had a large garden, a swimming pool and a spacious house, all fully enclosed and safe. 

However, Ruth took one look around our new home, and said, “You do realise that you now have the perfect environment for Ian to be autistic.” 

I didn’t understand what she meant at the time, but afterwards I wandered around the house and grounds and realised that she was right. Ian had as much space as he wanted to get away from us, to do his own thing. A child that safe could be supervised less, and therefore be as autistic as he wanted more often – which was exactly the opposite of what we had been trying to achieve.

After the move, the team slowly began to fall apart. The journey was a lot for the therapists and although we could still pay them for their sessions with Ian and contribute towards their petrol, we couldn’t pay them for their time on the road.

Kirsty was working with several different families and the pressures on her were immense. She needed to take a complete break for several months, and after that would only be available to us for consulting and assessing. This was a huge loss to us. Kirsty was an integral part of our team as well as being Ian’s favourite tutor. We all listened to her opinion when it came to Ian’s education. For myself particularly, Kirsty had become a close friend, and I knew I was going to miss her.

Then Ruth pulled out. She was finishing her doctorate and was under enormous pressure – particularly as the university, which had initially supported her doctoral thesis, was now threatening to withdraw its support. Ruth’s thesis was perhaps more contentious than they had originally thought, and their ongoing refusal to recognise her work turned Ruth into a nervous wreck.  

Tania said she had to concentrate on her city practice and she stopped coming.

The final blow came when Anita got married, and her husband did not want her to continue working.

Our team had disintegrated within six months of our move and we found ourselves stranded.

Ian had progressed so much. By that stage, he had learned to write and draw; he was typing on the computer; and, thanks to Ruth, he had learned to answer questions properly, and could ask for anything he needed. He could say “Please,” “Thank you,” and “Excuse me” as necessary and was, to my mind, as near ‘normal’ as it was possible for him to be.

I passed him in the lounge one morning and said, “Hi Ian” as I walked by, and he immediately responded “Hi Mummy”, with a big smile on his face, making appropriate, uncoerced eye contact.

It really was a Wow! moment. We had achieved much of the change we wanted.  

*****

With no alternative on the horizon, I enrolled Ian in the pre-kindergarten group at the school Rory was attending. It catered for two-and-a-half to four-year-olds and although Ian was now a strapping great six, Barbara, the generous, gentle woman in charge, was happy to take him in.

Mixing Ian with a small group of typical kids was a huge success. It took him a while to adjust, and I had to go through a rather awful patch of separation anxiety where Ian cried and cried when I left him in the mornings, but this in itself was so gorgeously normal it had implications for me I knew no one else would really understand.

The other, smaller, children accepted Ian with love and generosity. He was a gentle giant among them, towering over even the tallest child in the class, and when he took their toys from them, they took them right back with frowns and complaints, and Ian learned the give and take of normal play.  

Every morning they had circle time, and because Ian seemed not to want to hold hands with the other children, he was allowed to stand in the centre of the circle as they sang their morning songs. Barbara told me how Ian would turn around slowly with a little smile on his face while the children were singing, as if he wanted to watch each child, and then, when they stopped, he would take over and sing their whole song back to them. This delighted the children and they always cheered and applauded after Ian had finished.  

The only problem with mixing an older child in this group reared its unexpected head one day during playtime. Ian, bigger, stronger and autistically unafraid, climbed the tree in the playground, right to the very top. I arrived to fetch him just at that moment, when Barbara was wondering what on earth to do next. I could see at a glance what her problem was – she didn’t want to leave the little ones unattended on the ground while she retrieved Ian, nor did she want to climb the tree herself, which might encourage the smaller children to follow her. So, ignoring the rather lovely white dress I happened to be wearing, I shinned up the tree to collect my son.

Ian was so used to playing physically with me that the minute I touched his arm he let go of his branch and would have fallen straight to the ground if I hadn’t managed to grab him firmly around his wrist. I held Ian tightly with one hand while he dangled out of the tree, and, with his full weight hanging off me, I was able to lean sideways and lower him to Barbara, who supported him the few remaining feet to the ground. Thank heavens all that swinging and tossing that Ian enjoyed so much had developed the muscles in my arms and shoulders!

Obviously Ian was not presenting the best example to his classmates, and after this incident I had to make sure that I arrived in time to fetch him before break time started. Barbara really didn’t want other smaller children climbing beyond her reach.

But watching Ian blossom during these few months, I realised that mixing an autistic child with typical kids of a younger age represented the very best that could be achieved. It had done Ian the world of good and he had learned to behave appropriately with the group in a way he never would have, mixing with other autistic children or at home in an intensive home programme. 

However, I still wanted Ian to be involved in some intense classroom-type learning, so in addition to mornings at the Roseway pre-Kindergarten (delightfully named Little Rosebuds), I enlisted the help of some retired teachers who lived in our neighbourhood.

These three women, I hoped, would have the teaching experience to keep Ian busy given that he was, at that stage, learning in a more normal way. However, it quickly became clear that they were all unsure how to approach Ian, and – clever little blighter that he was – he took great delight in running rings around them, day after day. These kind women just shook their heads. They really had no idea how to deal effectively with him. The most determined of them did get some results, but mostly they ended up working a great deal harder than Ian.

However, all of this fell apart when we made the biggest decision of our lives.

Addendum to Chapter 8 –

The photograph of Ian (above) is my most favourite photo of him, ever. It shows him at Little Rosebuds, interacting with two of his friends there. This in itself is glorious – the autistic child, interacting.

Autism : From the Inside – Chapter Seven

Before they started working with Ian, I asked each of the tutors to read the Catherine Maurice book that both Neil and I had read. Once they had done this, they understood our motivation and were happy to accept that we believed our child’s behaviour could be changed.

Ian’s weekdays were divided into blocks, and the hours shared out between the tutors. Having read that the ultimate aim of an intense therapy programme was to give the child as little time as possible during the day in which to be autistic, so that behaving in a non-autistic manner would become his life-habit, we set about arranging as full a timetable as we could manage. With a constant stream of people supervising Ian’s behaviour, his autistic mannerisms – his hand flapping, shrieking, hitting out and throwing objects, and his complete withdrawal from the world should – should – be reduced, maybe even phased out altogether.

The tiny glimpses we had had of the Ian within the autistic everyday Ian were so special, how could we not long to have this beautiful clear-eyed angel with us all the time? 

With this goal in mind, we organised virtually every second of Ian’s day and the dedication of the tutors in helping us to achieve this was extraordinary.

Ruth committed herself to spending two hours with Ian every weekday between the hours of 11am and 1pm. Both Tania and Anita spent an hour with Ian every weekday at different times, and Kirsty spent two hours with him, three times a week, Monday, Tuesday and Thursday. I spent time with Ian during the week padding out the hours, and over the weekends as well, to keep the momentum going. Between us, we managed to keep him busy for up to 30 hours per week and our timetable, at its best, looked something like this :

Keeping Ian busy didn’t just mean keeping him occupied, it meant making him concentrate, hour after hour after hour. He wasn’t going to improve because we asked him nicely. He was going to improve because we insisted. Of course, we made our insistence as pleasant as possible; we rewarded him continuously with toys he wanted, a variety of small snacks, sips of his favourite juice, big hugs and happy smiles, but we insisted nonetheless. And we insisted hour upon hour. Nothing he could do would make us go away; we were there in his face constantly with our sweet smiles and our endless requests.

My instructions to the therapists were simple: Any behaviour that didn’t conform to neurotypical development was to be addressed. This included the hand flapping and the face pulling. Cute when he’s three, I said, not so cute when he’s thirteen, and definitely not cute when he’s twenty-three. Let’s deal with this now!

I put up a large poster in the therapy room (which I had made myself) which read “What has Ian learned today?” My goal was that he should learn something – anything – each and every day.

Ruth’s mandate was pretty straightforward: Persuade Ian to talk. Not so much speech therapy as speech pathology – it required that she get something from nothing.

The enormity of her task was daunting, but Ruth wasn’t the timid type. She began by asking Ian to say “Mmmmm” for something he wanted – on the basis that this was the simplest possible sound he could be asked to make. Ian was stubborn, but Ruth was stubborner! It didn’t take him long to learn that Ruth wasn’t going to go away, nor was she going to get out of his face, so if he wanted his juice, he might just as well say “Mmmm”. He did, but he took his time doing it! I have hours of video footage of Ruth in those early days, kneeling on the classroom floor in front of Ian, watching him, encouraging him, and waiting for many long quiet minutes for him to respond appropriately. Ruth’s persistence was extraordinary and her patience quite unbelievable.

Of course, I watched like a hawk for signs of stress – we all did – but once Ian was settled into the routine, he walked into his classroom quite happily, and calmly endured this endless tutoring.  

Day after day, week after week, month after month, our lives revolved around Ian’s therapy programme. 

*****

Of course, all therapists had their own ideas – as did I – and these ideas had to be aired and examined, and a plan of action agreed upon. To this end, we tried to get together once a month to have a Therapists’ Meeting. This would be held in the evening in the lounge of our house, wonderfully hosted by my husband who poured the wine.

Suddenly Ian would be faced with not one but ALL of his tutors together at the same time, and his face was always a study in horror!

In the early days when Ian was learning to make noises on request, and because we had followed Ruth’s instruction that in order to teach Ian the reason for communication we had to immediately imitate any noise he made – in the hope that if we imitated him, he would learn to imitate us – we had all become used to imitating his every sound. In class, Ian would make a noise and we would echo it, and it had very quickly become second nature.

Suddenly, when we were all together, Ian – having cooed or whooped or wailed – was immediately echoed by five female voices all unconsciously producing a perfect reproduction of his coo or whoop or wail.

It had Neil in hysterics. Quite understandably, Ian fled.

With the wine flowing, and freed from the stresses of the day, these meetings quickly became relaxed and raucous. However, sometimes they also became quite heated as differing approaches and personal opinions were held on to. I recall a fairly lengthy argument one evening between Tania and Ruth. Tania wanted to teach Ian sign language to give him a means of communicating before he learned to speak.  Ruth was determined to stick to her quest for direct speech from Ian. Both women were adamant their approach was the best one, and neither would back down. 

Neil, ever the gentle mediator, brought the meeting to order. “We will do both,” he said, “and see which method Ian favours, and which method works best for him.”

Of course this made those on opposite sides work even harder to prove that their method was the best, and Ian could only benefit from this added determination!

So Ian did learn some signs. He learned that ‘Mummy’ was his right hand on his heart.  He learned that ‘finished’ was the sweeping together of both palms. He learned that ‘hello’ was a touch to the forehead and an open hand in the air. He learned that ‘same’ was both forefingers tapped together side-on, hands out, palms down. 

One Saturday afternoon, about three months into Ian’s therapy programme, I was working in the garden, watching Ian out of the corner of my eye as he played on a ladder. I saw him looking directly at me, so I stood up straight and smiled at him. He smiled back. Then, without hesitation, he touched his fingertips to his forehead and put his hand on his heart.   I gasped. Ian had just signed “Hello, Mummy.” 

I was so moved that for a moment I couldn’t speak. With tears starting in my eyes, I walked up to him and gathered him off the ladder into the biggest hug.  

“Hello, my boy. And thank you, thank you, thank you.”

That was the first time in his life that my son spoke to me. 

However, Ian’s few signs didn’t have time to become really fixed before the patient hours of work paid off and Ian began to talk. Within a few short months, he was greeting his father with “Ha-o” for hello, saying “oo” for juice, “ween” for green, “nah” for no, “dzum” for jump, “tchwi” for swing, “yeh” for yes, and, bizarrely, “mummoo” for mummy. Once he proved he could be verbal, sign language was abandoned and everyone strove to increase his vocabulary – the notes in our therapy journal from this period are filled with excited sentences like these from Ruth: “Utter shock!  Ian said ‘More bounce’ for me today. Well, actually it was ‘mo punce’, but WHO CARES??!”.   

With Ian’s speech came exceptional moments – moments that not only validated our therapy programme, but which also permanently marked my life.

One quiet evening I had bathed Ian and was getting him ready for sleep. He was sitting in my lap as I dressed him in his pyjamas. I wasn’t really paying attention to Ian at all. I was thinking about a family get-together we would be hosting the next day, trying to remember if I’d bought enough food.  It finally dawned on me that Ian was saying “mum-mee… mum-mee… mum-mee” over and over again, very deliberately. I was so used to him calling me ‘mummoo’ that this new, correct pronunciation was quite strange. I looked down at him.  

“What it is, my boy?” 

He stared deep into my eyes, his own eyes for once clear and intense.  “Ya – o”. 

I frowned.  “What?”  

“Ya – o,” insisted Ian.  

Then it dawned, like a great wave crashing on a rock. The hairs on the back of my neck shivered. My son was telling me he loved me! He was saying ‘Love you!’ Oh my God! Stunned to the core I looked into his beautiful golden brown eyes. They were so open it was like looking directly into his soul. I could hardly breathe.  

Then Ian giggled and was autistic again, and the moment was past.

*****

It was around this time, when every precious word from Ian had taken almost superhuman effort from everyone in the team, I found myself standing in a queue in a supermarket behind a woman with a small child. This little lad was about three or three-and-a-half years old, and he kept tugging on his mum’s trousers, saying “Mum, please may I have some juice?  Please?  Mum … Mum …”  His language was so precise and so perfect, I listened in amazement.  His mother ignored him completely. 

Standing there in that public place, I felt a hot anger grow inside me. I wanted to grab this woman by the shoulders and shake her, “Listen to your son! Listen! He’s talking to you! Don’t you realise how special that is?” And at the same time I felt deeply sad for the child who was talking so perfectly and being ignored. Each word a natural miracle, falling easily from that child’s mouth. Each one a gift.

But one doesn’t accost strangers with one’s own problems. I closed my ears to the child’s pleading and walked away as fast as I could.  

When I got home, I knelt down in front of Ian. I addressed him gently, “Hello, Ian.” 

I watched his eyes flick in my direction. There was a pause and then he took a breath. “Ha-o… mummoo,” he said quietly.  

Months of hard work; two precious jewels. I kissed him, and smiled at him, and thanked him for both of them.

Addendum to this chapter :

There is nothing that an autistic child cannot already (physically) do, on his or her own, in the absence of any physical disability. The challenge of a therapy programme is to get them to do it when you ask for it. And then to do it more than once.

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.