Autism : From the Inside – Chapter Twenty-Four

It is many years since Ian was diagnosed, and so, after all this time, how does it feel to have an autistic child?

Well, there’s the social version that insists that you love him just as he is, wouldn’t change him for the world. And you smile as you say it and try not to look too brittle. But inside lurks the real, secret truth, which knows you’d change him in a heartbeat if you were given half a chance.

Having an autistic child feels … like having been wounded deep inside, like having been assaulted … violated … by nature. You can live with it, deal with it, even accept it to a certain degree, but there’s a hurt inside that never goes away.

The evenings are the worst, when the stresses of the day sit, accumulated and hanging around my neck. When bathing a growing child for the umpteenth time just stretches into endless future baths. When I can see myself, older, less strong and fit, still supervising the adult, the man, naked in front of me, still needing prompting to wash ‘those important little places’ as my Mum used to call them, still chatting to himself and not to me. Still relying on me absolutely, because in my mind’s eye I cannot see it any other way, no matter the hours of work I’ve put in teaching him to be independent.

And then that silent howl rises up from deep within and the tears stream, and I try to hide them because I don’t want to upset my child, but a gentle hand reaches out to touch the tears and a husky little voice says “Sad”.

It isn’t a question, merely a statement of fact. Tears equals sad. He’s learnt this.

Sometimes there’s concern behind it; mostly there isn’t.

The silent howl goes on, but somehow I control it and respond, “Yes, my boy, tonight mummy’s sad. Let’s have hugs”.

And I hold him close because he’ll let me, and I breathe in the scent of his hair, and remember the little angel sent from heaven just for me, and I cry.

But I carry on.

Is it self-pity? Loss? Despair? I don’t know. I’ve examined this wound from so many angles I’ve lost count, and even today I can’t say why it remains so fresh, as if yesterday was the day on which we were told our child was different, not some sunny afternoon so many years ago.

But there’s the good side, too. The little reminders of what a special child Ian is, when he takes my hand for no reason other than that I’m nearby, or when he climbs into my lap for hugs just because I’m sitting down. 

Or like the time he rushes into the kitchen, looks me straight in the eye and says “Mummy, come …” and I follow him to his bedroom where he’s been typing on his computer and he points to the words and tries to read what he’s typed, and I correct a rare spelling mistake, and such a happy smile spreads across his face because now he can see that it’s right, and he understands that it’s right, and he reads it again, because he can.

Mostly these days I am swamped by thoughts of all the things Ian can’t or won’t do, and all the things he still ought to learn; but if I manage to take a step back, I look at my strange, self-contained son and think how good he is, really. Okay, he doesn’t share much of himself, he doesn’t share his thoughts or his feelings, but he can express himself well enough. He can ask for what he wants or needs. He can make his displeasure known in words if he feels like it, and he can do many things for himself, too, these days. He has finally accepted that getting dressed in the morning is just another part of daily living. He chooses and carries books to the car to keep himself occupied on a journey. He clears his place at table after a meal. He still behaves impeccably when we go out together and is a quiet, well-behaved companion when we go shopping, pushing the trolley for me, reading my shopping list, finding the right aisle by reading the overhead signs, and taking correct items off the shelf. Quietly, he is using more language, more appropriately, to express himself.

Ian will always need supervision and help, and will always require guidance for so many things.  Full independence was our original goal but the arrow fell far short of our aim. He still has a lot of growing up to do, and there’s no way of knowing where Ian’s behaviour and abilities will finally settle. We remain optimistic. We still love him to distraction and will continue to protect him from the world for as long as we can.  

Despite everything, all the ups and the downs, all the stress and the angst and the suffering and the soul-searching, Ian has always been – and will always be – my little angel sent from heaven … just for me.

Autism : From the Inside – Chapter Twenty-Three

This is a particularly difficult period of time for me to write about. It seemed that everything I had worked so hard to achieve with Ian came crashing down all at once, leaving me feeling so utterly defeated I didn’t know how I would ever be able to continue.  

On the 28th of January 2007, I wrote a desperate email to my friends, Kirsty, Ruth, and another speech therapist friend, Deborah –

“How quickly things can change.

“No sooner were we commenting on the incessant wind affecting Ian’s auditory processing than the wind dropped, the sun shone again, and Ian’s behaviour took the most unexpected and violent turn for the worse.

“On Monday afternoon when Neil phoned me from work, I broke the news that Ian had spent one whole hour of that morning screaming at me, then he’d spent the next hour trying to hurt me, either with his head or his hands.

“In between screaming bouts and having to hold his hands down and avoid his falling head (which he aimed at my wrists – ouch!), Ian answered my questions promptly and accurately, and completed his worksheets well, even though his writing wasn’t quite as steady as usual. At the end of the most difficult morning we’ve ever spent together, Ian’s work record was a completely inaccurate reflection of his behaviour. My shoulder was stinging from the couple of times I wasn’t quite quick enough and Ian smacked my bare skin with his pencil, and my ears were ringing from his glass-shattering screams.

“Tuesday was not quite a repeat performance because I altered various things to avoid the usual pattern, but work wasn’t really on the agenda.

“On Wednesday we went out. Thankfully Ian was his usual well-behaved self in public.

“On Thursday, Neil was at home. He wasn’t feeling well and had decided that missing a moderately busy day at work by resting in bed would leave him strong enough to deal with Friday, a very busy and unmissable day. Halfway through the morning he came through to the kitchen and stood at the door watching Ian yelling at me, as he had for the past hour.

“Do you need some help?” he asked.

“Probably,” I smiled ruefully.

Interestingly, after Ian realised that his Dad was home, he stopped trying to hit me and I could finally let go of his wrists.

We battled through another hour with some almost pleasant, quiet moments – shattered by Ian’s screams the minute I opened my mouth to speak.

On Friday, we sat together in the lounge, just mother and son. Instead of asking him to read to me, I read to him, and he sat in my lap with my arms around him. It was a welcome relief just to be friends.

It’s strange how you find something in yourself you didn’t know you had. Last week I found a calm, quiet place deep inside me where nothing Ian did could touch me. I wasn’t affected by his noise, nor by his repeated attempts to catch me unawares with a hand-flick or a head-butt. My voice was soft and serene, and my composure couldn’t be rattled for as long as I wanted to sit and try to work with my child.

After those difficult mornings, I led Ian to his bedroom, quietly shut his door, and wandered through to our lounge to sit for a long, long time simply staring at our beautiful view, trying to work out what had happened to the gentle, loving, happy child Ian used to be.

Do I need help, Neil asked me. Oh boy, do I ever! The eleven-year-old autistic child is a force to be reckoned with, and I’m all reckoned out. I don’t have any answers to the million questions I’ve asked myself, but I do know that for Ian there has to be a time when education must take a back seat and just being a person, trying to keep a grip on his world, must be more important. Perhaps he has learned all he can for now and needs time to just be.

That’s all I wanted to say.”

The responses I received from my friends deserve to be included almost in their entirety because they were so beautifully written, so concerned, so wholly supportive, and so very interesting. From Kirsty –


”Dear, dear Fiona

How I wish I was there!! Just to give you a hug, make you a cup of tea and lavish support. Because you do sound so alone. And I understand that calm, quiet place deep inside where nothing Ian does can touch you, but I also know it’s a defence mechanism, and, though this may be hard to hear, it is ABUSE, albeit from someone who has a condition and has little other forms of power and control, and it will have the same effect on you as if anyone else you loved was trying to hit, head-butt and hurt you. I once worked with an eleven-year-old (til she was thirteen) who used to bite and pinch me when she got mad, and sometimes for no reason at all. I took it and took it and took it and took it. I developed that “calm, quiet place deep inside” where nothing could touch me. What was the result over time? Deep, dark depression that took me years to get over. And a willingness to let other children abuse me, again and again. It’s not right. And it’s not right to take it.

My instinctive advice to you is this: stop working with him. Take him for long, long walks instead, for a week at least. Show no interest in work at all. Give yourself a rest. If he tries to hurt you, walk out the room, go and do something else, give him no response at all. Don’t stay there and take it, with the excuse that he’s autistic. Please, please don’t, Fiona, and I almost have tears in my eyes when I write this. Please don’t take it, please don’t allow anyone to do that to you, even Ian. You don’t deserve it. It will erode you.

I send you a big big hug. I wish I was there to help you too. Please write and let me know how it goes.”

From my friend Deborah, I received –

“I love this e-mail you sent because I can relate to it so much and feel a deep empathy and understanding and knowing.

In my work with autism, I have known many children to go through these extreme behavioural patches. I, too, have spent hours trying to work out why, wondering if it was something I did differently in the therapy session or what it was that set off a sudden outburst or difficult period. Sometimes I find out and sometimes I don’t. It can be something in the environment but I do believe it can also be physiological – ups and downs, hormonal changes, emotional development, etc.

Children with autism have delayed emotional development and sometimes extreme behaviour at a later stage is due to this. Sometimes there is something physiological or sensory going on, sometimes it is something in the environment and sometimes we don’t know what it is!

Mostly these phases just pass and things are easier again.

Courage and strength to you.”

Ruth’s initial reply was short and typically Ruth – 

“My dear Fiona, Bloody hell … I’m SO sorry.”

I sent Ruth a copy of Kirsty’s wonderful email to me, and after she’d read it, Ruth wrote at length about her thoughts and feelings –

“Abuse? Yes. Depression as a result? Yes. Add to this an enormous dollop of guilt because ‘why would a child (however ‘dis-ordered’) hurt me unless it was, in some way, MY FAULT? So while Kirsty has experienced the depression, I experienced more along the guilt lines from interacting with Ian and many others (even though Ian never hurt me, I was consumed with guilt that I couldn’t just magically ‘produce’ speech FROM him – and FOR you). Whether guilt or depression, what is common, however, is the fundamental negativity of our responses.

So look at what you are DOING, Fiona – and see how instinctively you are returning to wonderful, positive interpretations of reality; walking with Ian for example – my goodness, how I remember Ian on our walks; how PERFECT our relationship was; how happy we both were. Instinctively, you know what to do to restore joy and balance in your lives. I guess my question is, why you would not think that working hard with Ian at ‘making you both happy’ is not an incredibly valid educational outcome – at least for now? Why not give yourselves the permission to work on this particular outcome and not to construct a time in your mind where you need to return to ‘table work?’”

Ruth’s reply to me led me to write a long and complicated email to her in which I expressed thoughts that had been plaguing me for months –

“Yes, when things go wrong with Ian I take it very personally, but I’ve learnt over the years (and remember, I’ve been working with him on and off for more than eight years now) that his behaviour cannot always be my fault. I have reviewed my own teaching style so often, I’ve been in danger of becoming as meaningful as a small puddle of water and sometimes I just have to get on with it. You did what you had to do with Ian, you believed in yourself, and you made him talk. I still believe to this day that if it hadn’t been for you he wouldn’t talk at all. So quit the guilt-trip, I’m not buying.

Many years ago (gosh, I remember it so clearly it could have been yesterday), you asked me “Do you want Ian to change or do you want him to be happy?” and these words have stayed with me ever since. You were absolutely right, you know. It’s really hard to keep them happy while you’re trying to help them fit into your world. It just doesn’t work that way, not in the long run anyway. But it certainly doesn’t pay to be negative about it. That way lies madness.

My latest malady – for want of a better way of putting it – is the end result of all this schooling. Here we are in Ireland, where the State is doing its best to ensure that these autistic children get some form of education – they’re even being fussy about the kind of education they’re getting (as if they have some Master Plan) and who they’re getting it from (I’ve been told I’m not an appropriate teacher for Ian because I hold no formal qualifications), and I’m sitting here saying To what end? To what end all this education? Could we be preparing these children for a future that doesn’t actually exist? And isn’t that the unkindest thing we could possibly do?”

I found myself chasing my tail at this time, worrying about how to teach Ian this and how to approach that without Ian launching himself at me. I was tying myself into a knot with concern about all the things I felt he still had to learn, repeating the words, “I have to teach him … I have to teach him …” and then Neil looked at me with his beautiful, calm eyes and asked me one simple question:

“Why?”  

I was halted in my tracks.  

“Because,” I countered, “because…” and then I realised I didn’t know what the ‘because’ was.  

In his gentle voice, my husband continued, “Surely keeping Ian happy is more important right now?”  

And I knew he was right.

So school was abandoned. We went for long walks together and Ian was finding pleasure in his books again. I had temporarily disconnected his computer because he had been refining his computer pictures down to one single image, which he reproduced over and over again, and this image seemed to make him angry. When he asked for the computer I told him firmly, “No computer, Ian. It’s broken.”

And how was Ian through all of this recovery period? Well, it was a little like walking on eggshells for a while. Some days he was angry and noisy, others angry and quiet, and on other days he was good, sometimes even loud but happy, which was a great improvement. Occasionally he smiled too, which was wonderful. Things seemed to be improving. We had some great walks, even though the weather was still cold. However, it was dry and walking our country roads was very pleasant indeed.

Slowly, things settled down.

Ian was still hugely resistant to formal schooling when I dared to try it again but I had other tricks up my sleeve and managed to teach him new things without him even realising he was being taught. We started painting together, too, and I re-introduced him to the idea of modelling with play dough. We walked the neighbourhood flat, which was good for us both, and Ian seemed to enjoy being out and about so much.

He remained exceptionally well behaved when out in public – enough to convince me that his resistance was aimed solely at me – which meant that we could still do the shopping together with no trouble at all. I had always believed that how Ian behaved in public was as important a part of his education as how or what he learned in school, and I was grateful that this part of him had not changed.

Autism : From the Inside – Chapter Twenty-Two

Towards the end of September 2006 I had a couple of extraordinary days with Ian when there wasn’t one single word of self-chatter throughout his session. Not one squeak out of place. It was unheard of! I was so excited by this, I wrote to everyone I knew. I was particularly pleased because I had started some new exercises with Ian, and he usually reacted quite badly when I introduced new things.

The first new task was one of those things which had been suggested by the Speech Therapist and something which I had tried with Ian over the years, even as I wondered about the importance of it : Rhyming words. Did this task really constitute something my son should learn? I struggled to see the point of it; I doubted Ian would ever start writing poetry …

Anyway, there I was with brand new flash cards showing, say, a picture of a dog with the words “This rhymes with …” next to it. I looked at these cards and wondered how I should teach Ian this.

I sat with him at the kitchen table, armed with a sheet of paper and Ian’s pencil. I quickly wrote the words ‘hair’, ‘frog’ and ‘mouse’ underneath each other.  

“Okay, Ian,” I said, turning to him, “which one rhymes with Dog? Which one sounds the same?” and at the same time pointing with the pencil to the word ‘frog’. Good ol’ error-free learning! Of course, Ian said the one I pointed to, and then I swayed from side to side in my chair, holding the flash card and chanting “dog… frog… dog… frog…” and Ian joined in with a smile on his face.

Then I showed him the card with the picture of the kite on it and wrote ‘light’, ‘chair’ and ‘table’ on my piece of paper. He almost got it but I guided vaguely with the pencil. Bingo! Again, I rocked from side to side, chanting the rhyming words, and Ian joined in again, smiling.

The third picture was of the moon. I wrote ‘fork’, ‘sit’ and ‘spoon’. I watched Ian closely without assisting him in any way at all, and could see him sounding out the words in his head. Without any doubt in his mind, he said “Spoon!” clearly and determinedly. Gosh. Now I was excited. We swayed together, chanting the rhyming words, laughing at each other. *

For ‘queen’ he picked out ‘green’ with no hesitation; for ‘cat’, ‘hat’; for ‘door’, ‘four’; for ‘bear’, ‘hair’; and for ‘fox’, ‘socks’. I was particularly excited that I wasn’t always writing words with similar spellings, so Ian was obviously working on the sound of the word, not his mental image of the word.

That was new task number one. It seemed to be on its way to being conquered, and with such good humour!

Then I decided to capitalise on one of Ian’s video soundtracks, preparing sheets for him on the computer, writing “A is for ___________” and following that with several blank lines for writing, then “B is for __________” with more lines. The second page had C and D, the third page E, F and G. **

I put the first page in front of Ian and said “A is for?” to which he immediately responded “Acrobat”, straight out of the Spot video. I let him write it on the line. Then I wrote ‘apple’ next to it. I pointed to the next blank line and repeated, “A is for…” and let him think about it. After a short pause, he said ‘animal’, and wrote down the word. I countered with ‘and’ and after a pause, he wrote ‘ant’. I wrote ‘as’ and he wrote ‘an’. I wrote ‘at’ and he thought for a moment and then, with a peculiar determination, said ‘a’ and wrote it!

For B, he immediately wrote ‘ball’ from Spot.  I wrote ‘balloon’, he wrote ‘beach’; I wrote ‘but’, he wrote ‘bed’, I wrote ‘blow’, he wrote ‘bubbles’, I wrote ‘bear’, he wrote ‘bee’.  This was getting interesting.  

C became ‘car’ from him, ‘chair’ from me, ‘cards’ from him, ‘cat’ from me, ‘country’ from him (I didn’t even know he knew that word!), ‘candle’ from me and ‘cake’ from Ian.  

D got even more interesting, with ‘drinking’ and ‘dear’ from Ian. Under E, he included ‘elephant’ (from Spot), ‘egg’ and ‘eating’. Under F, we had ‘flamingo’ from Ian, ‘Friday’ from me, ‘friend’ from Ian (clever boy), ‘farm’ from me, ‘far’ from Ian (oh, very clever, to just take off one letter!), ‘frog’ from me, ‘for’ from him, ‘flower’ from me and ‘from’ from Ian.

Under G, the last page I had prepared, Ian gave me ‘giraffe’, ‘goat’, ‘glass’ and ‘good’. I was impressed. Not only did I have Ian’s full attention during this task, he really applied himself to the problem of finding words starting with the requisite letter. It was marvellous to see him concentrating – you could almost hear the cogs turning!

If words are Ian’s strengths, I was definitely teaching to them. The most bizarre thing about how wonderful those two days were was that the previous day had been the most abysmal lesson we had quite possibly ever had.  I was exhausted afterwards. And then such an overnight success. Quite extraordinary. I was a very happy bunny.

At the beginning of December that year I wrote to Kirsty –

“And what of our Ian? Well, he turned 11 the week before last, and seems to have grown each time I see him. He’s doing well in school at the moment, seeming to find great delight in reading and learning new words. We’ve started reading one of my favourite recent purchases, a children’s book called “Kiss the Cow”, all about a magic cow who gives masses of milk, but only if you kiss her on the end of her nose after milking her. A girl named Annalisa milks the cow but refuses to kiss her nose, saying “Ughhh! Imagine kissing a cow,” whereupon the magic cow stops giving milk and everyone goes hungry.

There are 19 pages in the book, so it’s going to take us a while to get through the whole thing, but Ian happily reads pages 1, 2 and 3 now, and has learned loads of new words. He loves the name Annalisa, and the name of the cow (Luella), putting a musical lilt into the names which is hugely entertaining. He was also deeply self-satisfied when he could finally read the word ‘prairie’ – I whooped and cheered, and we shared a special moment, Ian wearing one of the little smiles he sports when he knows he’s done something really clever.

The story starts so beautifully – “Mama May lived where the earth met the sky, and her house was as wide as the prairie. It needed to be. Mama May had so many children she couldn’t count them all.” (Ian can read all of this.) But the pictures are beautiful – the reason why I bought the book – and the story is delightful. Teaching Ian to say “Ughhh!” (Annalisa’s reaction when asked to kiss the cow) is also great fun.”

In the meantime, I ploughed on in my commitment to my child’s education and continued to make sure he learnt something new almost every day, even if it was just one word, or that he took less time than the previous day to answer a question. When we went out together, I made Ian read the various signs we saw in shops or, on one occasion, at the train station.  

“What does this sign say, Ian?” 

“Please wait here,” he answered. 

“So that means we must wait here,” I told him, as we stood in one place for a while ‘waiting’. And so he learned that the signs around him had to be read and responded to.

I’m sure it wasn’t really the kind of education the State had in mind for my child, but I believed it was important to my child’s future, nonetheless.

Around this time, Kirsty had also asked me about my feelings on being both mother and teacher. This was obviously something I had thought about a great deal. She had suggested that doing both made you ‘face up’ to the autism in a way which someone who was tutor but not mother, or mother but not tutor, would not understand. 

In reply I wrote –

“But does it make you face up to the autism? Hmmm. That comment made me stop and think. Yes, it makes you face up to it (in a working at the coal-face kind of way), but it doesn’t make it any easier to accept it. They’re not the same thing. I still struggle to deal with Ian’s autism on a daily basis. That never goes away. And the future is such a scary place when you have a child like this, an abyss one daren’t really look into because the fear is too all-encompassing. That awful “Should anything happen to us, what happens to Ian?” THAT is the worst of it.”

All in all, though, things with Ian seemed to be going well. He was participating in classes, laughing and learning, and we looked set to enjoy many more good months of hard work. It wasn’t always marvellous and there were days when Ian was just horrid, but mostly he was paying attention and classes had some element of fun to them.

Until one particular Wednesday…  

Blimey! He was awful. I knew that we had good days and bad days, but sometimes there were days when I sat and looked at Ian and had to consciously work at not running away, hiding in the hills and leaving him to it.  

I had presented him with our last task of the morning, a fairly new exercise, which required Ian to remember and write down what he had been doing in school. Ian sat and looked at the worksheet as if he had never seen one before. After having tried to chivvy him into giving me some sort of answer, and fast running out of ‘I’m-an-unremittingly-cheerful-person’ tricks, I leaned back and muttered quietly to the gods, ‘Not a bloody thing’.

Leaning forward again, calm and determined, I asked Ian, “What did you do in school today?”, and he picked up the pencil and carefully wrote ‘Nothing’.

Okay, that was something anyway.

I pushed him to write on the second line and he grudgingly wrote ‘reading’, and then skipped a line and wrote ‘nothings’ and then went back a line and slowly and determinedly wrote ‘No’.

Well, that just about summed up our morning!  

Later Neil phoned me and asked how things were going, and I said, “Please come home. Ian’s being awful and I want to run away.” 

He caught the two o’clock bus and when he got home he gave me a big hug, and sent me to my parents’ house next door for tea and a chat.

Then January happened…

* Rudolph Steiner education – physical activity with learning enhances learning.

If anyone is interested in knowing more about Rudolph Steiner’s ethos, perhaps read – https://en.wikipedia.org/wiki/Waldorf_education Also this – https://www.studyinternational.com/news/physical-activity-lessons-boosts-learning-schools/ (I love the idea of a ‘new study’ of something Rudolph Steiner knew a century ago 🙄)

** This ties in with the video footage I posted – Chapter Eighteen Extras

Autism : From the Inside – Chapter Twenty-One

Ian was growing up.

At nine years old, his behaviour swung between the perfect child we knew and loved, and an utterly outrageous child we didn’t know at all. He was just coming out of a dreadful phase where the head hitting, hand twitching, shrieking, Teletubbie-thumping had been at an all-time high. I eased off doing school with him because my presence seemed to make his behaviour worse – and I couldn’t blame him, he must have been thoroughly sick of me – and when he was at his worst there was no way I could get through to him in any event so it was pointless trying.  

As the days passed, though, he seemed to be improving. He was happier within himself, and calmer all round.  Until one morning.  

I had suggested that Ian get dressed – a normal everyday suggestion, put to him in a normal everyday way – and I knelt down on his bedroom floor to help him, whereupon Ian threw himself down on his bed, thrashing like a wild thing. Then he launched himself at me and screamed directly into my face.  Shrill, long, and very, very loud. It was really quite shocking.  

I looked at him sternly when he’d finished and in an upset, constricted voice I said to him, “How dare you scream at me? I don’t get to scream at you. I’m the one who wants to scream …”

Then we both sat in silence. I think I was pinching the bridge of my nose and had my eyes closed (oh, how I longed to be far away at that moment) when all of a sudden this husky little voice next to me said, “I’m sorry.” 

Well, I was pretty stunned but I immediately gave Ian a big hug and told him, “It’s okay, my boy. We’re both alright now.” And he hugged me back. Then he took his pyjamas off and was happy to get dressed, and I was left thinking Gosh, the things that happen.

Later that evening I took Ian into the bathroom to brush his teeth. I usually sit on the toilet seat with Ian standing in front of me, but that night when I sat down Ian threw his arms around my neck and clung to me in a really tight hug. I manoeuvred him into my lap and hugged him back. It really gets me when he does this, and I had trouble breathing past the lump in my throat. Then a little voice from my neck asked, “You okay?” which choked me up even more, but I managed to reassure him that I would be fine. 

When I opened the bathroom door, Neil was standing there looking a bit concerned. “You were gone for so long I wondered if everything was all right,” and I smiled sadly at him. 

“We’re fine,” I said. “Ian wanted hugs.”

This didn’t happen often, but in some strange way it was almost like the opposite of autism.  Ian wasn’t shutting me out and holding me at arm’s length; he wanted to join us together, in that moment, in one world, where all was straightforward and clear. 

And at that moment, in that hug, I could make it happen.  

Autism : From the Inside – Chapter Twenty

In one of her marvellous letters, Kirsty had asked me if there was anything I would do differently, if I had the chance to start all over again. I spent a long time thinking about this one. My natural introspection meant that I had considered this question before many times, and with hindsight always so much clearer, I had to be careful not to beat myself up about mistakes I might think had been made along the way. 

I wrote to Kirsty –

“What would I do differently if I had my time again? A few things that I can think of now.  As a mother I’d be more forgiving, less demanding. I’ve become so, but I didn’t used to be.  I mean more forgiving of the child’s autism, his lack of control over it. We’ve always treated Ian like a normal kid with odd behaviours. This, in retrospect, hasn’t always been the right way. Mostly, but not always.  

I’d have let my child achieve more unaided – it’s too easy to assist all the time, and the child never learns how to do it him/herself. Standing back and just waiting is the most powerful tool you have. As long as the child actually knows what is required, it’ll come, eventually. I once made notes for forty minutes whilst waiting for Ian to put his socks on. He went through his entire repertoire of avoidance techniques, but I wouldn’t be moved. I refused to do it for him and forty minutes later he did it for himself as I had always known he could.  

As a tutor I’d have started with the written word far sooner with Ian. I have video footage of him, even within the first few months of therapy, trying to look at the words on the back of the flashcards, more interested in the words than the pictures. He could read long before we gave him credit for it.

I’d also give the child the tools and the confidence to contradict me. One spends too much time teaching positives – ‘What is this? Yes! It’s a cow!’ or ‘Point to the shoe. Good pointing!’  –  we don’t arm the child to be able to say ‘Rubbish!  It’s not a horse, it’s a tractor!’”

It was an interesting exercise, thinking like this, because it made me face up to a few home truths at a time when Ian was going through another difficult patch. His latest behaviour to emerge was a violent twitch, which I truly could not cope with. All the other behaviours he had been through up to that time had been either easily controlled or easy to ignore – the hand flapping, the noises, even the face pulling – but this one I just couldn’t take. To hold his hand and feel him violently twitching his fingers was really awful. I prayed that it would pass soon.  

One morning, after a successful but difficult lesson at the kitchen table (successful because his work was good, difficult because he kept trying to tune out and I had to work hard to keep him focused), we went for a walk along the lane. It was a beautiful autumn morning, with a soft breeze, high clouds, occasional sunshine, and birdsong everywhere. Holding Ian’s hand as we walked together and feeling him violently twitching his fingers every few seconds depressed me almost more than I could bear.

We walked down a track through a little forest which has a small stream running through it. It was a wonderful place to walk because I could let go of Ian’s hand and let him run free without having to worry about traffic – there was nowhere he could go but on the path.  When we came to a more open area where Ian liked to throw little stones into a meandering stream, I watched as he stepped onto a large rock in the middle of the stream. 

Then, deliberately and with forethought, he jumped into the running water. Well, he was wet and there was no point getting het up about it, so I let him get on with it. Occasionally he looked my way, and I smiled and nodded my approval.  

For forty-five minutes, he played in that little stream, kicking the water, jumping in it, splashing it with his hands. And for those forty-five minutes, he was blissfully happy.  Smiling and giggling to himself, he played and played. And while he played, I watched and walked in large silent circles on the forest path, trying to come to terms, yet again, with what it means to have an autistic child.

Autism: From the Inside – Chapter Nineteen

Ian’s speech was improving slowly. He knew many words but consistently refused to use them. This was deeply frustrating for me, knowing that he had such a large vocabulary in his head that he wouldn’t use. I had listed the words he had learned, and knew that he had more than 550 words at his disposal, and yet his conversation revolved around set requests like “Toy Story video please, Mummy” or “Push me, please” when he was on the swing. He could express his needs and wants, but appeared not to want to learn to speak more than was absolutely necessary.

However, there were occasional surprises, like the day I took Ian for a walk in a nearby pine forest.

The forest floor was very damp from all the recent rains we’d had, but the mossy tussocks provided a dryer path, as long as you could keep your balance. 

Ian, of course, had no trouble at all – well, he could stand upright on the back of his rocking horse, rocking, whilst reading a book, so obviously his balance was fine! Mum, on the other hand, falls over at the drop of a hat, or in this case, the shifting of a mossy tussock. 

Thankfully, I fell into a dry ditch, not a wet one, and the moss was very comfortable to land on. But what took me by surprise after I’d landed was Ian’s little voice saying “Oopsie!” as he surveyed his Mum in a heap on the ground. His “Are you okay?” as I got up was so appropriate I hastened to reassure him that I was, surprisingly, quite fine, no damage done, whilst privately I marvelled at his concern and his compassion, and knew I would never forget the moment.  

We continued our walk over the squashy moss, punctuated by Ian saying “Oops!” every time his foot moved when he didn’t expect it to. It was really very funny.

One afternoon, Neil and I were sitting at the kitchen table discussing Ian’s work and his progress, as well as his occasionally extraordinary behaviour, his growing up, etc, when Ian walked through the kitchen and opened the back door. For whatever reason, I didn’t want him to go out and said, almost to myself, “Ian, please stay inside” to which my darling, pliable, amenable little boy shouted “I want to go OUTside!” – and promptly did – thereby resolving something Neil and I had just been discussing, i.e. did Ian actually understand the concept of opposites? 

Ian was finding quite a voice for himself.

Then one day Ian brought me his barking dog, looked at me intently and said “Red” with meaning. I looked at the dog.  It was brown, black and white, with no visible red. Perhaps its tail wasn’t wagging again. I pressed its paw to make it bark. Nope, the tail was fine.  

“Red,” said Ian, again. Then I spotted a length of black cotton. Aha! Thread! 

“Fred,” said Ian, amending his request.

“Fetch me the scissors, Ian,” I told him. 

He romped off to the kitchen and brought back the tin opener. Not quite what I was after, but a reasonable alternative. No good for cutting the ‘fred’ though. 

“Rory!” I called to the kitchen. “Give Ian the scissors, please.” 

Within seconds Ian romped back into the lounge with the scissors and I cut off the offending thread. 

“All fixed,” I told him.

Ian then examined his dog from every conceivable angle, and disappeared back into his bedroom.

Ian’s thread fetish became slightly scary after that because he would spot an offending length of something and get the scissors himself. The kitchen scissors were about seven inches long, large and strong, for kitchen use. I made a point of following Ian back to his room when he took the scissors, just in case.

One day Ian ran into the kitchen saying, “Scissors please, Mummy” and taking them off the hook, he ran out again. I followed him – running with scissors, honestly! – wondering what he’d seen.

I found him sitting on his bed, aiming the scissors at his face. When he saw me, he opened his mouth and pointed to a wobbly tooth.

“Scissors… please, Mummy.” 

Horrified, I gently took the scissors out of his hand. 

“Oh nooooo, my child. No scissors for that. I’m sorry, but no. Not this time.”  

He looked quite disappointed. He sensed that his tooth was hanging by a thread; what was the difference?  Later that evening, he pulled the tooth out with his strong nimble fingers, and thankfully didn’t try to damage himself again. But boy, that was one scary moment. 

And then there were the exceptional moments when Ian appeared to have leapt linguistically in a direction no one could have anticipated.  In December of 2005 I wrote to his erstwhile speech therapist, Ruth –

“I meant to tell you about an incident which happened the other evening. I was watching TV, one of these ‘reality shows’ about a group of people walking through a desert – all of them complete novices – none of them possessing, apparently, the strength of character to avoid whining or complaining – you know, the kind of TV which seems so popular these days, and I was just about to turn it off when Ian appeared at my shoulder, looked at the telly, and said, clearly and distinctly, “Prehistoric man.” 

I looked at Ian, looked back at the TV and had to admit that yes, one of the fellows did have a vaguely Cro-Magnon face, but I wouldn’t go so far as to call him ‘prehistoric man’, and I looked back at Ian and queried “Prehistoric man?”  His mouth curved into the most gorgeous smile as he glanced at the telly, and he repeated it looking straight into my eyes: “Prehistoric man!”  And then he was gone.  

Good grief! This happens every now and then, a bizarre stunner which we cannot take credit for. God knows where he got that one from. ‘Prehistoric man’? It’s not something which one constantly uses in normal everyday conversation, now is it?

Just wanted to share.”

I had long since realised that Ian saw far more than the rest of us, heard more than the rest of us, and quite possibly remembered more than the rest of us; that his mind probably held so much information I was no longer surprised that he couldn’t always retrieve the word he needed. We dump information all the time. Imagine if you couldn’t do that, if all the information you had ever acquired, all the things you had seen and heard, sat cluttered in your head, forever. It explained much to me about why autistic children needed to ‘zone out’.

Then again, there were times when Ian’s use of language was so perfect it seemed almost impossible.

One day, I was sitting at the kitchen table playing a game on my laptop, supervising Ian who was watching a DVD of The Sword in the Stone. Neil made a comment about my figure, saying that a near neighbour who had stopped at the gate for a chat while we were gardening earlier in the evening must have been envious (What a sweet man. Surely it was a trick of the light, darling!), and I countered with the comment that I was envious of her because she had just told us she was expecting her third child, and I would give anything to be pregnant again. And with exquisitely perfect timing, Ian, very softly and almost to himself, said, “You scare me.”   

Well, Neil and I just burst out laughing! Neil agreed wholeheartedly with Ian, saying that when I made statements like that I was particularly scary, but what a moment. Heavens, it was funny!

But where did he get that one from? We had no idea. We couldn’t think of a video it came from, and he certainly hadn’t heard it at home.  One just had to wonder. It wasn’t just appropriately timed, it was an appropriate comment – in fact, Ian’s first joke when you come to think about it. Oh me, oh my. Out of the mouths of babes and autistic children…

Of course, as a parent there were times when we had to use his own language back at him, like the time Ian was fixated on an alphabet song from one of his Spot DVDs, and often delighted us with “A is for Acrobat, B is for Ball, C is for Car, D is for Dolphin…” straight from the song. On this one morning Ian was determined to leave the breakfast table long before he’d finished his breakfast, and I was equally determined that he should sit. So I quipped “P is for Please, E is for Eat, Y is for Your and B is for Breakfast.  Please Eat Your Breakfast!” And the most beautiful little smile came over his face as he worked through what I’d just said. He gave me an amused glance – I can only call it that – sat back down, and started to eat again. It was the most wonderful momentary connection, and a great start to my day. 

What a kid!  

Autism : From the Inside – post-Chapter 18 extras

I include here two more video snippets (slightly longer this time) which will, I hope, give you more insight into how we worked together and what we did.

In this fun task, Ian would engage in appropriate turn-taking and
come up with words beginning with the correct letter, then write them
down. He also had to read the word I wrote. He frequently came up with
words I hadn’t known he knew, which was always a surprise.

In my endless quest to improve Ian’s speech, I decided to provide him with
responses – in answer to set questions – which he could learn
and use as necessary. He had different sets of sentences for different
activities in various rooms in the house. As so often happens, doing the
task once was easy; doing it again was more of a challenge.

I think it is important to stress again that I wasn’t working from a textbook or following a set programme. I read a great deal, and I did a lot of thinking – usually in the middle of the night.

It was one thing to decide “Oh, I need to teach Ian such-and-such”, but quite another to reduce that task to its barest essentials and formulate a path of progression which would take Ian from nothing to the final goal. And progression was what it was all about. I aimed many tasks at Ian’s strengths (to keep motivation high), and I constantly reviewed his progress. Was he getting it? If not, why not? Could I teach it another way? etc.

I taught Ian things I felt he should know, and because I made up exercises as I went along, I was able to teach them in a way I knew Ian would understand. Because he was so clever, if he didn’t get it, I wasn’t teaching it right. It was pretty obvious.

These snatches of video are only ever a tiny snapshot of one morning’s work, mere seconds of several hours’ concentrated effort, every weekday of every month.

Thankfully, Ian was a wonderful pupil, and I hope that the fun we had together and the joy it gave me to teach him comes across in these video offerings.

Autism : From the Inside – Chapter Eighteen

Was it all as good as it seemed? 

Hmmm… 

In some ways, yes, it was. Ian was learning well in school, although he was testing my patience to the limit with his stubborn silences and his determination to fight me every step of the way. Sometimes he wouldn’t let me get a word in edgeways while he chatted endlessly to himself, driving me mad with his incessant noise. Despite my best efforts to encourage him to join me in our world, he seemed determined to remain in his own one. In the face of this, it was very hard to remain cheerful, optimistic and enthusiastic.  

However, there could be no denying that Ian had progressed hugely since his days at the Autism Unit and educationally he was a different child. He had learned so much.   

But there were many things wrong with our set-up, too. I had to acknowledge that trying to do everything myself without even looking for help was an enormous strain. It often kept me awake at night, and I would lie in the dark worrying about what to teach Ian next and how best to approach it. 

Neil always supported me one hundred per cent, although there was little he could actually do other than give me lots of his wonderful reassuring hugs. He knew the strain I was under, but he believed in what I was doing and loved it when I shared Ian’s daily work with him, showing him all the things Ian had done, and commiserating when I vented about all the things Ian wouldn’t do. The Autism Unit experience had left us both scarred by the speed of Ian’s deterioration, and we were determined to protect our child from well meaning but misguided help.

Was this arrogant? Of course it was! But as Ian’s parents we knew we had to give our child the education we believed he deserved, and his continued improvement justified our decision.

At the end of August that year, I wrote to Kirsty –

“Ian was doing particularly well at the end of July, before I took a much-needed break from teaching him.  I had managed to formulate tasks that combined reading, comprehension and writing – giving him short sentences, which were incomplete, and requesting him to write in the required word. Quick example: “I like to sleep in my ____” and Ian would read the sentence, give the correct word ‘bed’ and write it in. I also write lists of “The opposite of up is ____” which Ian will read and complete, again writing in the missing word. He knows a lot of opposites now, which makes my job that much easier.  

I’m also having fun giving him sheets of paper with “Draw a happy face” written at the top, with a big circle in the middle of the page, which Ian would happily fill in with appropriate features. His ‘sad’ face is brilliant, a real downturned mouth and sad eyebrows! His cross face is great too, with a zig-zag mouth and strong angry eyebrows. I find it interesting that his facial interpretation centres around the eyebrows.”

Ian remained himself. Out of school he was bright, sunny, contented and loving. What a sweet kid. Mostly I think he enjoyed school unless the work was particularly taxing, and some days he was a pleasure to teach. 

It was just those days when he didn’t want to work and retreated to his own quiet place inside his head that were really trying. If he was in a mood to be passive, nothing I could do would get him out of it. I would sit looking at him wishing I could squeeze something out of him. 

Sometimes I would lay my head on my arms on the table and pretend to cry. Ian would listen for a while, then lift my head with both his hands and look at me quizzically. Do you mean it? his eyes would ask. On a good day he would say out loud “Do you need a tissue?” and I’d reply “Mummy’s sad, Ian. Please answer the question. Look at the picture. What is the boy doing?”  and without hesitation (on a good day) he might reply “He’s sleeping”. And I’d thank him and praise him and move on, and he’d retreat again and refuse to answer the next question, and I’d think, I’m going to go mad if this keeps up.  

But then, conversely, I could put a piece of paper in front of him marked Plurals with single words on it – calf, knife, foot, mouse, tooth, etc – and say “one calf, two …” and Ian would write the correct answer, and then the answers to all the others without prompting until the list was complete. Then he’d say, “I’m finished” and lean back in his chair. Gold star stuff!  

There were occasional surprises, too, when the growing-up-Ian displayed itself to us. He was much more his own person and often very determined to have things his own way. If, for example, you didn’t supply his juice quickly enough when he’d asked for it, he might put his face right in front of yours and say slowly and clearly (as if you were mentally challenged), “Please.  May.  I.  Have.  Some.  Juice.” and then, if you didn’t respond within the two nanoseconds Ian had allocated to this task, you might just get a mug slammed on the table in front of you, in case you still hadn’t got the message!

He was doing so well with me in school I started him on a new task, something I’d seen in a school exercise book, which showed a line of numbers with letters underneath, like this –

It took Ian a while to work out what was required, but once he realised that he could make actual words (most of which he could read), he got quite involved.*  I loved watching how his eyes moved from the blank line to the number underneath, up to the corresponding number and then down to the required letter. He then wrote the appropriate letter on the space provided. It wasn’t a difficult exercise, but it did require some concentration. Once Ian was managing single words, I started making short sentences, but then he lost interest and we had to move on to other things.

We were also working on the concept of ‘bigger’ and ‘smaller’, and I would draw quick sketches of things like a big butterfly and a small butterfly, or a big heart and a little heart, and at the top of the page write ‘Which butterfly is bigger?’ or ‘Which heart is smaller?’ and Ian then had to point to the correct one and write ‘this one’ underneath it.  This went pretty well; he earned himself a few gold stars for these pages. From this, of course, we moved on to ‘small’, ‘bigger’ and ‘biggest’ and ‘big’, ‘smaller’ and ‘smallest’ with equal success.

All in all, Ian’s education progressed, he was learning new things, and we were having fun into the bargain.

* Ian learned the ‘number alphabet’ so well, he started ‘writing’ words on his calculator. He would do it so quickly it was virtually impossible to see what he was up to, but occasionally I could catch him with a speedy “What does that say?” and he would read the ‘word’ to me. Once, he told me “Walk” – he’d put the numbers 2311211 into his calculator – and another time, it was “Juice” – 1021935. Today, he can read the numbers as easily as you or I might read the alphabet.

This was the easy version, though. I used other tasks where the alphabet corresponded with random numbers – like an adult ‘code words’ game. Ian got into these, too, but of course he always preferred the easy ones.

Autism : From the Inside – Chapter Seventeen

But getting back to Ian’s schooling, every now and then I would be brought up short by the realisation that there was a marked hole in Ian’s abilities. I realised one day that he was using his name as a key, and that he would only respond if his name was included in the instruction. For example, if I said to Ian “I love you”, he would ignore me, but if I said, “I love you, Ian,” he would answer, “I love you too, mummy.”

This was very nice and very cute, but what it meant in real terms was that when we were out and about, he wouldn’t greet anyone because strangers didn’t know his name. They would greet Ian with a cheerful “Good morning” without giving him the hook (‘Good morning, Ian’) for him to hang his answer on.  

This was quite important as the Irish adore children and they will always greet a child. To not respond is very rude and even when I explained about Ian’s condition and they understood completely, it was still embarrassing (to me) when it happened. 

Once I had realised this, I started teaching Ian to respond to me when I only said “Good morning”. At first there was a deathly silence while he ignored me completely. Then he realised that I was actually waiting for something. It took a while, but we got there in the end and he did start to greet me in return. I hoped that when the lass at the supermarket checkout greeted him, Ian would be able to respond appropriately instead of ignoring her.  

He did, but I don’t think she quite caught his “Good morning, Mummy…”

In one of our earlier speech therapy sessions, the therapist had shown Ian a picture of a chap riding a bicycle and the front wheel of the bike had hit a rock, so the back end of it was up in the air and the chap was falling forward. She had asked Ian to explain what was happening in the picture. After a deafening silence of several long minutes, Ian summed up the situation most succinctly. He said, quite simply, “Oops!”  

I thought it was brilliant.

A quick sketch approximating the picture
(and yes, I know there are no pedals on my bike!)

However, it did bring to light a gaping hole in Ian’s knowledge – the ability to explain anything or to make comment on anything. So I started working on comprehension exercises with him, at that stage fully prompted because he didn’t have a clue. Reading him a story three sentences long and then expecting him to answer questions about that story was much like waiting for a rocking horse to neigh. It highlighted the enormous hole in the autistic mind, the inability to comment on something or to think in abstracts.

Ian looked completely bored by the whole idea and if I couldn’t get him interested in it, how was he ever going to progress in this area? It was and has remained a frustrating problem area. 

But the highlights were so all-encompassing! Small though they were, they were huge to me, desperate as I was for any sign of progress. I wrote to Gail in July of 2004 –

“For the first time ever, today, Ian gave me a weather report! He looked out of the window and, with no prompting whatsoever, said “Grey. Today it’s cloudy!!” I was so surprised I nearly fell off my chair. Whoopee!”

And later that year, I wrote again to Kirsty, filling her in on Ian’s progress and the things I was teaching him –

“…I found myself taking a step back from Ian’s school work the other day to look at how far he’s come in the year I’ve been teaching him. Okay, so it’s not miraculous or anything like that, but he’s learnt to write again – and neatly at that – and he’s learnt some elementary sums (he knows that 1+1=2, and 2+1=3, that 1+2 also =3, that 2+2=4 and he’ll hazard an accurate guess that 3+2=5). He’s so chuffed when he gets it right! He’s also writing his plurals now – I have pre-prepared sheets on the computer which I change daily and print out for him – one goose, two ______, three feet, one _____ – so I present him with a list of five or six different ones and he writes in the correct answer. He’s also doing sheets of opposites, and completing simple sentences.   

I’ve finally got him to the stage where I can show him a picture card and ask him “What is the girl doing?” and he’ll answer “The girl is reading … the book” or “What is the boy doing?” and he’ll answer “The boy is knocking on the door,” which makes my heart soooo glad. I whoop and cheer and clap my hands, and Ian sports this little smile like he’s secretly really, really pleased.” 

 

A simple task – but already I was asking Ian to work both ways,
from singular to plural, and from plural to singular
If Ian was unsure of the answer, he could count the
blue beads and get the total of the sum. He would then move the beads to
the ‘total’ position and choose the answer from the row of numbers above the sum.
(All hand drawn on paper)

Autism: From the Inside – Chapter Sixteen

While I was home-schooling him, Ian had a computer in his bedroom. It was disconnected at night but he had free access to it during the day when he wasn’t in the classroom. He had a limited range of programmes on it, but what he managed with those was nothing short of extraordinary.  

The programme Ian loved most was ‘Paint’, a programme which allowed him to make pictures using squares and circles, which he could move around to create a picture. Changing the sizes of the shapes and filling them in with colour meant Ian could reproduce – recognisably – scenes from some of his favourite DVDs.

It took me a while to realise what he was doing. It was only when I saw his bee picture, and recognised it as a scene from Winnie the Pooh, that I understood what he was up to. When I looked at the film of Winnie the Pooh myself and paused it at the scene Ian had recreated, I was astonished at what he had achieved using only circles and squares.

  This led me to look more closely at all his other pictures as well. If this one was so accurate, perhaps others were too.    

There was a certain amount of guesswork involved because Ian wouldn’t identify where the picture came from, and although his very artistic older brother, Rory, recognised several, we never found out the root of many of them.   Sadly, in the end we had to take Ian’s computer away from him because he seemed fixated on only one picture which he created over and over again. It was a close-up of Thomas O’Malley from The AristoCats, in the scene where the tomcat leaps on the milk wagon and terrifies the driver, so Duchess and her three kittens can get aboard and journey back to their beloved Madame in Paris.

It was only months later that I realised that Ian hadn’t been recreating the same picture, what he had in fact been doing was minutely changing each picture, and recreating the DVD footage, frame by frame. He was creating his own animation, which he could flick through on his computer, one picture after another, replaying the scene for himself!

 

Aside from the computer – which had been a very successful gift – we struggled every year to find Ian a birthday present he would enjoy because his range of interests was so narrow. Then we had a brain-wave and for his birthday that year, we gave Ian a keyboard.  

At first, he played strange, haunting, other-worldly experimental music. Plinky-plonk tunes that had neither beginning nor end. This kept him busy for quite a while before his interest waned.  

Then he went back to it, but this time spent hours shaping chords. He found three that satisfied him, and he repeated these in a sequence for many weeks. Then his interest waned again.  

When he came back to the keyboard, he seemed to have a purpose. He fiddled with the notes until he could produce a succession of chords. And it was only when I heard the full progression that I realised what he was up to.   The music he had successfully recreated, without training or assistance, was the background music to the opening number in the film, ‘The Lion King’.  

And then, wonder of wonders, one afternoon I heard him playing the chords and very quietly, entirely to himself, he sang over the top –    “From the day we arrive on the planet and, blinking, step into the sun / There’s more to see than can ever be seen, more to do than can ever be done…”  

I stood outside his bedroom and cried.    The beauty of that moment was so intense, so huge, and simultaneously so frustrating, I didn’t know what to do with myself. It was so perfect I was breathless, but why-oh-why didn’t I have some recording device with me! I knew I might never hear Ian do this again, and this precious moment would be lost forever.  

In his teens, of course, Ian’s voice broke and he could no longer sing all his songs the way he wanted to.  His near-perfect pitch was deeply offended by his ‘new’ voice so he stopped singing completely, which was really, really sad.