One thing I was determined to do while I was working with Ian at home, was take notes of our work together.
This began when we very first started the therapy programme in South Africa, where each therapist made notes on what they had done with Ian that day, so the others could read it for the next session or the next day, and keep abreast of changes or progress or things to watch out for.
When I was working with Ian on my own, my reasons for taking notes were slightly different.
Firstly, if you don’t keep a thorough record of progress, how are you ever going to know – clearly and definitively – that progress is being made? It’s easy to think ‘Oh, I’ll remember’, but I certainly wouldn’t have, not week by week, month by month. I knew it would be better if I wrote it down, accurately and honestly, as I went along.
Secondly, I kept notes because I lived in fear of the Schools’ Inspector. If he paid me an unscheduled visit, would I have anything that looked like anything to show him?
So I wrote notes.
Endless notes …
I filled books with details of Ian’s schoolwork, his progress, his successes, and his failings.
Of course, the Inspector never did visit. But I still have all the books, all that proof of our hours together.
They were in a box I came across recently, labelled ‘Ian’s School Stuff’, along with assorted paraphernalia from our school-room. One of the things in there was a clip tightly holding onto a collection of laminated single words.
I’d forgotten about these. This wasn’t a sentence-building exercise. This was to help Ian with his reading.
Ian often struggled to get from one word to the next, so I would line up a group of random words (obviously words Ian could already read!), and ask him to read them as quickly as possible.
I would read them to him first, to demonstrate, and then he would have a go.
Ian struggled with this at first, falling over some of the words, and occasionally reading them really slowly and carefully, but after a while he got into it and was surprisingly good at rattling off lengthy streams of random words. And it helped Ian to read more fluently, which was fantastic.
I lined up a few of them on the kitchen table this evening, and asked Ian to read them. Very obligingly, he did. Not as speedy as he used to be, but not bad.
Keep the notes.
You never know when you’ll need them.
And keep the paraphernalia; you never know when you’ll want to check if a task is still remembered!
When Ian was having his bath this evening, he was in a lovely frame of mind. All smiles and good humour.
I decided to capitalise on the moment and ask him a couple of questions about opposites – not the usual ones, we’ve done those to death – but ones that would make him think. I was curious to see what his answers would be.
“Ian,” I asked him casually, “what’s the opposite of woman?”
Ian was quiet for a while, then he gave me a huge grin and said “Man!”
I laughed, but I was surprised too. Ian is picking up the most extraordinary things these days, entirely by himself.
I challenged him again.
“Ian, what’s the opposite of child?”
There was a lengthy silence while Ian thought about this one. Then he looked up at me, and answered –
It’s not the answer I was expecting – ‘adult’, or ‘grown-up’ – but if you think about it, that is a pretty clever answer.
I don’t know what I expected. I had probably been lulled into a false sense of security by the success of the first.
It was bad, folks. Really bad.
As soon as Ian got a sense of what was going to happen, he resisted. I spoke to him gently, holding his face in my hands, looking into his eyes, and he listened and sat quietly, but the minute I tried to fold up the sleeve of his T-shirt, he pulled it down again and made it clear he wasn’t going to cooperate, twisting away from me, saying “No-no-no, please, mummy.”
This went on for five minutes. Maybe yes … he sat quietly … then definitely no.
Another nurse was called in. She held Ian’s arms from the front. I rested my hands on Ian’s shoulders from behind. And it all kicked off from there.
Ian started shouting, twisting himself this way and that in the chair. “No!” … “No!” … “NO!” … “NO!” … “NONONONONONO!”
I could feel him escalate from resistance to all out panic, and I raised my voice to call a halt to proceedings.
I shouted twice : “Stop! … Stop!” But the nurses couldn’t hear me through my face mask, over Ian.
I ripped off my mask – my one earring went flying across the room – and in desperation I shouted right in the nurse’s face –
And just like that, it was over.
In the ensuing silence, I held Ian around his shoulders, leaning my head against his neck, and I wept hot tears of shame and remorse.
Capacity bedamned, my son had shown us all, clearly and unequivocally, that he did not consent to this fiasco.
The nurses fussed over me like mother hens – I was offered tissues and tea and reassurances and a glass of water – and all I could do was hold my son’s hands and apologise to him as tears streamed down my face.
I was broken.
We left as soon as I could extricate myself from the nurses’ care, and I bolted for the car with Ian beside me.
Two days later, and Ian seems none the worse for the experience.
I’ve mentioned before that I don’t believe autistic people have no imagination.
I do believe that just because you can’t accurately test for something doesn’t mean it doesn’t exist – and to the fullest extent.
“Three studies are reported that address the often described impoverished creativity in autism. Using the Torrance Creativity Tests, Experiment 1 found that children with autism and Asperger syndrome (AS) showed impairments. Experiment 2 tested two explanations of these results: the executive dysfunction and the imagination deficit hypotheses. Results supported both hypotheses. Children with autism and AS could generate possible novel changes to an object, though they generated fewer of these relative to controls. Furthermore, these were all reality-based, rather than imaginative. Experiment 3 extended this using a test of imaginative fluency. Children with autism and AS generated fewer suggestions involving attribution of animacy to foam shapes, compared to controls, instead generating reality-based suggestions of what the shapes could be. Although this is evidence of executive dysfunction, it does not directly account for why imaginative creativity is more difficult than reality-based creativity.” https://pubmed.ncbi.nlm.nih.gov/10478731/
“Impoverished creativity”. Isn’t that just the most awful phrase?
I have wondered many times over the years how active Ian’s imagination is – even in the earliest days, when he was in his room, chuckling to himself. What was going on in his head then? What pictures did he see that entertained him so? He was completely alone, and laughing like he was watching something really funny.
It could have been creepy as hell, but it was actually delightful.
However, when your child hears a piece of music you happen to enjoy, playing in the background as you drive around, and then asks the next day for “Brown red music, please, Mummy”, you know you’re dealing with something a little bit special.
The music was ‘Celestial Soda Pop’ by Ray Lynch on his album “Deep Breakfast”.
Does Ian have synesthesia? We may never know. But something was going on.
(“Synesthesia is a neurological condition in which information meant to stimulate one of your senses stimulates several of your senses – Synesthetes can often “see” music as colors when they hear it, and “taste” textures like “round” or “pointy” when they eat foods.” https://www.healthline.com/health/synesthesia )
And while synesthesia isn’t specifically to do with imagination, it does give us a clue as to what is going on in the brain : colours and pictures. And imagination is all about pictures.
In the course of my (albeit very limited) research for this blog, I came across a very interesting article, written by someone on the spectrum themselves — he says “People see autistic kids lining up Hot Wheels or sorting Legos by color and assume there isn’t a whole lot going on in the imagination department. As someone who spent a lot of time in organizational-type play as a kid, I can assure you that I had a vivid imagination.”
It was interesting, and as always, useful to get an ‘inside’ point of view.
Getting back to my son, however, I often flick through Ian’s internet searches on his iPad at the end of the day to see where his mind has taken him. Sometimes his journey is obvious – a succession of the music he enjoys, or snippets from his favourite films on YouTube – but occasionally, he has wandered into a realm where, if he does not have an active imagination, there is absolutely no reason for him to be there.
Like the day he’d Googled ‘green water splash’ —
Or ‘red circles’ (although, admittedly, he could have been experimenting with self-hypnosis with these, couldn’t he?) —
Or ‘Caribbean blue sea’ – after listening to the song ‘Caribbean Blue’ by Enya —
There is no reason for Ian to be looking at these images unless his imagination is somehow, in some way, working.
He goes to strange and unexpected places, this we know, but yesterday was a corker.
I went into Ian’s room where he was lying quietly on his bed with his iPad, and I sneaked a peek at what had caught his interest that day.
This was a new one —
The webshop for physiotherapy.
He’ll never tell us, of course, and that’s a real shame because I for one would have loved to have known the thoughts behind that search.
One thing was for sure : Ian was imagining something. I will never doubt that, and just because he can’t express it doesn’t mean I won’t feel joy when I witness it.
When you were born, I had no clue about the adventures waiting for me or about the challenges you would present, or the things I would need to learn, academically, personally, and emotionally.
I didn’t know then that I would have to watch The Many Adventures of Winnie the Pooh five hundred times, or that I would enjoy watching it five hundred times, with you.
I didn’t know that I would have a child who would stay home way past his teens, and will quite possibly stay home until the end of my life.
I didn’t know how much joy could be found in the smallest things, like getting a smile out of you, or giving you a hug, or watching your concentration as you try to remember the correct response to a question, or hearing you correct yourself when you misspeak.
I didn’t know then that tears in your eyes would tear me to shreds, or that seeing you in distress was the worst thing for me in the whole wide world, and that each time it happened it would be forever seared into my soul, a psychic wound from which I would struggle to recover.
My ‘little orange boy’, with the fuzz of auburn hair that stuck straight up off your head, with the golden skin and russet-brown eyes. I called you Tiger then. Perhaps I always knew you had a battle ahead of you. Perhaps your rarity of soul just spoke to me. My little angel sent from heaven. My beautiful cuddly teddy bear of a child, who glowed in dreamland as if his aura were his own personal nightlight.
You may never know what you mean to us, and perhaps that doesn’t matter. I just hope you feel safe, and loved, and special. Your autism could have broken us, but somehow it made us stronger, and we – all of us – are better people because of it. You are the keystone of our little family, the heart around which we all revolve.
I have gained so much from knowing you. I have met people I never would have met; I’ve spoken to students about autism, something I never would have dreamed I could do, and never would have done had it not been for you; I have learned about what it means to be a human on a different path; I have learned to laugh in the face of awful adversity, and genuinely crazy situations; I have fought for you; I have cried for you; and I have made friends because of you, and found my soul sister, someone I never would have met but for you.
You are an amazing human being. And your autism is 100% a part of that.
Your life has taken us on an extraordinary journey – at times a bit of a rollercoaster it’s true – but also a journey of love. I am so proud of you, young man.
I have spent a lot of time on this blog talking about how autistic Ian is. There can be no doubt, I suppose. It’s pretty much there, in your face, front and centre.
So, in the hope of writing something a little bit different, and perhaps a little more positive, I found myself wondering: What is there about Ian that isn’t autistic?
Is there anything?
Let’s go through some areas of his life, and see …
The way he walks?
Well, almost. Except that he has a way of walking which is … gentle. Almost as though he steps carefully. He toe-walks, of course, he always has, and because of this, his feet are exceptionally broad.
We have his shoes handmade by a company in South Africa who make leather footwear, because they take Ian’s foot measurements seriously, have created perfect lasts of Ian’s feet, and the shoes they make actually fit him.
Even buying them, bespoke, from overseas and paying for delivery to Ireland, the shoes cost us less than handmade shoes would cost here – if we could get someone to believe Ian’s foot measurements, which proved impossible when we tried.
So Ian’s shoes are unusual, and the footprints he leaves are unusual, and the way he walks is unusual, too.
The way he talks?
If we discount the frequent snippets of video footage, and strange other-worldly sounds which emerge, and judge solely on his voice … maybe. If you can hear him.
Ian speaks softly and often quickly, so it’s easy to miss what he says. If he’s reading out loud, there will be strange emphasis on certain words, and no normal cadence to the sentence, so the delivery can seem a little strange.
But he pronounces words beautifully, even a more unusual word, like croissants. He does enjoy a croissant.
The way he looks ?
I suppose in photographs there is nothing to show that Ian is autistic. He looks normal, doesn’t he? Okay, his skin is paler than anyone else in his family, and his eyelashes are longer, and because of his toe-walking he has a marked pelvic tilt, and heaven forbid you ask him to smile for a photograph because you’ll get a grimace, but on the whole, Ian looks okay.
Actually, better than okay. He’s a handsome chap, and draws furtive glances wherever he goes.
The way he eats?
Hooboy. No. Definitely not. Well, not in our culture, anyway. Ian eats almost exclusively with his fingers, and his diet is very limited.
The way he dresses?
Given that Ian would happily spend the day in only his underpants – or even completely naked – he’s on the outskirts of social behaviour with this one. He’d fit right into a nudist colony. He’d be a raving exhibitionist, if he didn’t completely lack the awareness of his own nudity, or what it means to other people or society.
But he does wear normal clothes when we go out, and he wears them well.
The way he reads a book?
Almost. Until you realise that he’s read the same book a hundred times, and is flicking the pages so quickly even a world-class speed reader would have trouble keeping up. Why pause over the words when you already have them in your head?
He’ll occasionally turn the book upside down, just to see the pictures from a different angle. He could probably read it perfectly well. His brain is like that. (Mine too, upside down and backwards – I wonder where I get it from …?)
The way Ian watches a film?
Maybe, if you use the verb ‘to watch’ very loosely, and ignore the intermittent blasts of hand-flapping which appear.
Ian is happy that the film is on in the same way that his dad is happy the sport is on, behind him, with the sound off.
Television as security blanket.
The way he travels in a car?
Potentially, if you ignore the hand movements and his occasional imperious commands of “That way” (complete with pointing finger) when there is more than one road to a particular place.
His car door is locked. The windows are locked too, because he figured out that he could wind the window down and open the door from the outside. Autistic, not stupid. And he has a sticker in his window, just in case there’s ever an accident and I’m unconscious or worse, just to alert emergency services.
So where are we?
We’ve covered a lot of Ian’s life. Of course we haven’t covered every single thing – I’m sure that’s not possible – and some of it (like toileting) I don’t want to cover anyway.
But here are some positives –
Ian gives the best hugs.
He has a really beautiful smile, when it happens spontaneously.
He has a highly developed sense of humour.
He has a very good ear for music, used to sing with near-perfect pitch (before his voice broke), and taught himself to play the keyboard.
And he types like the wind. Really, really fast, accurately, and with only two fingers.
And you don’t get more ‘unpredictable and different’ than the behaviour of an autistic person. I mean a profoundly autistic one, not someone on the spectrum who has worked hard at it and managed to control their autistic behaviours and mannerisms, and found a workable niche in society. Good for them. I admire that enormously.
Ian’s behaviour is not predictable. Frequently, it is simply odd. And sometimes, when he gets alarmed, it could – and has been – perceived as threatening. It isn’t. But it has been perceived as such. (See my blog entitled “Autism : Listening to the people who matter”).
Anthropologically, fear has kept us alive, and it takes a lot of nerve to get beyond it.
I’m the kind of person who steps into the strangeness. I’m the one who walks into the dog fight to break it up – call it courage or call it foolishness, your choice – and I’m sure it’s no accident that I ended up with one of the strangest kids on the block, but it has definitely made being Ian’s parent easier. His weirdness doesn’t phase me. If he gets pushy, I’m the one in his face asking him what’s going on and defusing the situation as best I possibly can.
But other people don’t necessarily have the advantages (or craziness) that I have.
“Kids (and adults) with autism behave differently from other people. And if there’s one thing experience teaches us, it’s the fact that differences can be scary. Children with autism are taught to avoid “unexpected” responses to others—not because they are in any way harmful, but because the “unexpected” (rocking, flapping, asking the wrong question, repeating the same words, etc.) frightens people.” https://www.verywellhealth.com/why-is-autism-so-scary-260604
The behaviour of some autistic children can be very, very challenging, and it frightens us because we’re meant to be afraid.
So how do we combat it? How do we encourage our unpredictable ‘frightening’ children to stop scaring people? And – perhaps the most important question – should we?
In some ways, it’s like owning a dog. Bear with me here, it will make sense, I promise …
Imagine you have a big dog. He’s yours; you’ve had him since he was very small. You know he has a heart of gold; you know he loves people and he would never hurt anyone. He might pull on the lead to say hello to someone when you’re out for a walk. He’s strong. You hold him back because it’s polite. You try not to let him just bulldoze his way into that person’s space.
A stranger sees that dog, the size of its teeth, the length of its tongue, and they see you pulling him back. All they can wonder at that moment is: Are you strong enough to hold him?
It doesn’t matter if you say “He’s fine! He’s friendly!” because in the absence of further knowledge (or instinct) that stranger can’t read the dog’s body language. All they are conscious of is unpredictability, and all they hear is their amygdala screaming at them to run.
Now transfer that situation to my child. He’s an adult now. He’s taller than me. He’s slender but he’s a grown-up. That much is obvious – and I have encouraged that notion by helping him cultivate a beard. It’s harder to treat him like a child when he definitely doesn’t look like one, no matter how he behaves.
We are in the supermarket together, Ian and I. Ian decides he wants a particular type of bread. He makes a bee-line for it, regardless of who may be in his way. Social space and autism do not go hand in hand – see https://iancommunity.org/ssc/personal-space-autism. I happen to be holding his arm, and I try to control his forward movement so he doesn’t just push past a stranger.
The stranger turns, and sees Ian lunge towards her. There is a flash of fear in her eyes. It’s quick, there and gone – she’s seen me and she controls the fear in the space of a blink – but I have seen it. And I cannot unsee it. This woman, this stranger, was afraid, even for the merest moment, of my son. Because his behaviour is unpredictable. Because he was behaving outside the socially accepted norm.
Of course, the stranger carries her own history, her own baggage. She may be afraid of men generally. I would never know. The fact remains that in that moment my son engendered a fear response, and all I can do is apologise.
We worked hard, when Ian was in his intensive therapy programme, to modify his behaviour. We reduced the oddities; we encouraged the ‘normal’; we moulded him as best we could – rightly or wrongly – into a socially acceptable human being. For many years, it worked. Ian was as ‘normal’ as he could possibly be.
“Normal is also used to describe individual behavior that conforms to the most common behavior in society (known as conformity). However, normal behavior is often only recognized in contrast to abnormality. In its simplest form, normality is seen as good while abnormality is seen as bad. Someone being seen as normal or not normal can have social ramifications, such as being included, excluded or stigmatized by wider society.” https://en.wikipedia.org/wiki/Normality_(behavior)
But in the absence of continued pressure – no matter how gentle – to behave this way, Ian reverted to type. Like a turtle, he stuck his head out of his autistic ‘shell’, and played in the real world for a while. But when there were no checks on his behaviour; when he was surrounded by people who – their best intentions aside – accepted however he behaved because he’s autistic and that’s how autistic people behave – he regressed to his personal lowest common denominator, profoundly autistic, and retreated into his carapace once again.
And so I am left with a young man who scares people who don’t know him. People who see him as ‘unpredictable’, and therefore as potentially dangerous.
As I wrote in my book “I see this and my heart is squeezed. How could they know my angel has a gentle soul and wouldn’t hurt a fly?”
It’s a tough one. We know our sons and daughters. We know the limits and nuances of their behaviour. Other people don’t. Perhaps we just have to accept that on some level, our children’s unpredictability will always flick that fear response in strangers.
It’s no fun, but it is one more challenge that we, as the parents of people with autism, have to face.
Nothing to do with autism, this one. Just a short story I wrote last week in a quiet moment.
Enjoy … 😉
The Snail who would be King
There was once a snail named Cecil. I don’t know if snails usually have names, but this snail did. He had chosen his own name, of course. It wasn’t a gift from his parents (who he didn’t remember), it was a gift to himself. He thought it was a grand name. Cecil. King Cecil. Yes, very grand indeed. A name dripping with potential.
Cecil had only one problem with his desire to be a King: He was terribly shy.
Luckily, Cecil had his shell to hide in, and hide in it he did. It was smooth, and dark, and safe in his shell, and it smelled good. Sort of snaily, earthy, and nice. It was a rare moment when Cecil peeked out of his shell and looked at the world around him. He found it very scary out there. Open, and exposed.
He still wanted to be King, though.
But a King needs subjects, and he needs to feel safe enough to face them, doesn’t he?
Cecil didn’t feel safe very often.
There was the Thrush – a terrifying bird. Huge and sharp-beaked, with a creamy-white chest and arrow-head markings all down its front. Arrow-heads! I ask you, how creepy is that? Its beak could pierce a snail’s shell in a single determined thrust. Cecil had seen it happen. He didn’t know the snail it had happened to, but he’d seen it, and he’d learned.
He shivered, and snuggled deeper into his shell.
And feet, he thought, carrying on his monologue of things to be afraid of. Huge flat slabs descending from on high, with the power to flatten not only a shell but a snail too …. bleugh! … and dogs, and lawnmowers, and cows, and hailstones, and cars, and bicycles, and horses, and trucks, and the occasional cat’s paw …
Cecil trembled in the comforting darkness of his sturdy shell. He wanted to be a King, but how could he possibly be King of things which seemed to want nothing more than to destroy him and squash him flat? How could he speak to his subjects when his voice was so small, and they were very, very big?
Cecil took a deep breath, gathered what little courage he had, and popped his head out to look around.
In front of him was a long stretch of open land. Green. He turned an eye to his own brown shell. Not much chance of camouflage out there, he thought. I will be a little brown lump in a sea of green. Obvious. Exposed. I’ll be seen, maybe even – Cecil gasped, and dropped his tiny voice to an even tinier whisper – Maybe even by a thrush! He shuddered.
Determined not to let his fear overwhelm him, Cecil forced his thoughts away from all the things he knew could go wrong, stretched his head high, his eyes prominent on their tentacles, and allowed himself to ponder an important question.
What sort of crown should I wear as King? he thought. I saw a bottle cap once. That looked crown-like. Or the top of an acorn – except that’s more like a helmet, isn’t it? mused Cecil. Perhaps not such a bad idea at that, a helmet … But I want a crown that is obviously a crown, and subjects who love me, and a beautiful kingdom of colour and joy and safety.
Cecil may have been small, but he dreamed big.
He set off across the green expanse of openness. Up and down, up and down, up and down – Grass is a real challenge when you’re a snail – and suddenly a huge brown thing reared up in front of him. Poor Cecil nearly had a heart-attack, but it was only an old leaf. Sanctuary! he cried, as he ducked beneath it to rest.
And rested, and rested, and realised he was avoiding his quest. So he peeped out from underneath the crinkled old leaf, and looked this way and that, and most particularly up, because nearly all threats for a snail came from above.
It looked clear, and Cecil set off again. Up and down. Up and down. Up and down …..
After a long and terrifying journey of about seven feet – 84 gruelling inches if you’re a bee, but many more inches if you’re a snail, and go up and down along the way – Cecil came at last to a flower pot. He slowly climbed up the side of it, leaving a trail of shiny slime behind him – good, healthy-looking slime; he was quite proud of that – and as he crested the lip of the pot, he rested and bravely took a good look around.
He saw plenty of brown to disguise him in the pot, and loads of tall plants to protect him.
My, sighed Cecil with relief, this is paradise. Look! Colours above, and camouflage below, and safety, and food! I could live here forever. This is a place fit for a King!
A breeze stirred the flowers over Cecil’s head, and a daffodil bent low, towards him. Hello, she said. And who are you?
I am Cecil, and I’m here to claim this kingdom, and be your King. King Cecil! That’s me.
The daffodil flower was lifted by the wind, and nodded heads with her sisters as they chatted excitedly amongst themselves. Cecil reached his head up and listened hard – which for a snail is a problem, given that they don’t have ears.
Where’s his crown? rasped a pink tulip. If he’s a king, he ought to have a crown.
Cecil looked around the earth beneath him for something that resembled a crown which he could hastily don and shut up that nasty garish pink tulip, but apart from a couple of small weeds, there was nothing. He was about to make excuses – I lost it on my way; it was so heavy, I couldn’t carry it that far – when the daffodil dipped its head towards him again.
Here, she said, holding out a tiny jagged piece of quartz, your crown shall be this little crystal.
A crystal crown! Presented to him by his subjects themselves! Cecil wouldn’t have been able to believe his ears if he’d had ears, which he didn’t, as you now know – but the crown was there in front of him. All he had to do was put it on …
Would it weigh him down? Of course it would. A crown was a weighty thing, saturated with purpose and responsibilities. All Cecil knew was that the daffodils were cheering his name and nodding their vast golden heads in pleasure and excitement.
At last he had his kingdom, and his subjects, and his crown.
He didn’t have to be Shy Cecil anymore. Timid Cecil, Scared Cecil, Nervous Cecil, Trembling Cecil – all in the past.
This was a new era, the era of King Cecil of the Crystal Crown!
Cecil closed his eyes to the cheering daffodil heads, and rejoiced in the warm earth of his kingdom beneath his mantle.
A large thrush landed quietly on the lip of the garden planter and, with beady-eyed focus and the delicate precision of a master clockmaker, began lifting daffodil leaves ……….