Lord Can You Hear Me?

Father’s Day, and I am stood in a hospital children’s ward. My autistic son lies next to me in a bed, clutching his stomach and with a temperature of 40 plus. In front of me stands a surgeon, asking for my permission to operate. My phone is dead and I cannot contact my wife, who is in transit somewhere.

I ask for another five minutes, and in that time find myself saying a little prayer that my wife gets here soon, that my son’s appendix has not burst and that he will be okay. I am not religious, but it has been that kind of week. In fact, god seems to have featured heavily throughout our week.

You see, before the need to have a part of his body removed had cropped up, my son was on a quest to find God.

I’m sure all families have to carefully handle questions about God, whatever their faith. Our eldest has asked about heaven and hell and about people he knows who have passed away. His school seem to have opened his mind to an acceptance of God and although we have never tried to contradict them, we have never openly shared the belief, because we didn’t need to. I think the most I’ve ever had to say is, “Some people believe…” He has not pushed the issue any further and religion is not a part of his home life.

Until this week. B has latched onto the idea of God in a big, literal, autistic way. It’s been a regular feature of conversation as we are asked such questions as, “Is He everywhere?”, “Can He see me now?” and “Does He have a phone?” The issue of whether ‘Jesus Christ’ was a swear word was raised (I guess this is the context in which he has most heard those words!). He appears to have realised that there is a more supreme being than Mum, Dad, his teacher, his headteacher or even Santa. I think my son sees this as an opportunity.

On Wednesday, B was not having a good day. It was our fault. We totally threw out his routine by taking him out of school early (for an OT appointment) then taking him shopping. That was all fine, except that by the time we got home, it was nearly bedtime. This meant changing out of his school uniform and into his pyjamas. Consequently, we had skipped his ‘own clothes’. This was not good. I had no idea how important the routine of putting on his jeans and a t-shirt was to my son. I do now.

There followed a meltdown of biblical proportions. I think the god my son is looking for is Old Testament God- the one that’s all about fire and brimstone, floods and wrath. That God seems to better suit the three days and three nights of rage that followed. In retrospect, B was unwell, and unable to articulate it either at home or at school. What he was able to articulate was his desire for God to fix things for him. “Phone God!” he demanded (constantly). “Make him invent a time machine!” My son decided that God’s number was 999, which led to a near emergency call, before we put all phones out of reach.

Trying to explain that God was not real, or that he was real but not here, or that he was listening but wouldn’t reply was impossible. Philosophers, theologians and thinkers have struggled with the question for thousands of years. How can I be expected to explain the unexplainable?

My answer was to embrace that most important of parenting skills: hypocrisy. Despite my own lack of faith, I sat him down on the bed and said, “I know how we can talk to God.” “How?” he asked. “By praying”, I replied, and we put our hands together, closed our eyes and said a prayer. For a time machine. When we had finished, my son said, “Can we ring him now?”

The upset carried on into Thursday, when B had a bad day at school and then brought his bad day home with him. In the midst of his psychotic rage, the phone rang. It was 8.30, which meant it would be my mother, who always rings once she knows the kids will be tucked up in bed (if only). Rather craftily, I let B answer. Perhaps Nanny’s voice would settle him or divert his attention away from The God Question”. Instead, B Launched again into his full on rant about enlisting God’s help to cross the paths of space and time.

“Phone God! Tell him to invent a time machine…” etc.

After about three minutes of polemic, it began to sound like Nanny wasn’t ‘t getting a single word in, so my wife wrestled the phone from him. To her surprise, a rather shell-shocked voice at the other end of the phone said, “Er, this is just a courtesy call about the quote for new windows we gave you.”

If nothing else, we have stumbled upon the best cold-call defence ever. Just let B answer! His theological rantings would put anyone off from calling again. I might even try it when they knock on the door. That might not work if they are Jehovah’s Witnesses, though.

Later that week I found myself saying a prayer when we thought we had lost B’s favourite teddy. My wife was upstairs when I heard her cry “Shit!” It was not so much the word she used but the tone in which she said it that had me alarmed. After seventeen years together, I am very familiar with the nuances of my wife’s tones. I can tell what sort of shit it is. This was not a forgot-to-buy-butter shit, or even a son-in-trouble-at-school shit. This shit was more serious.

B is inseparable from his favourite teddy- a cuddly Olympic mascot he calls Baby Mandeville. Baby M had been left at a Saturday morning special needs playgroup we attend (in a church hall, appropriately enough). My wife’s shit was a Baby-M-has-been left-behind shit. This would have meant the end of the world. Never mind the apocalypse or the Rapture- this was seriously bad news. We had to get Baby M back. And so I found myself praying he would be found as I raced to the church hall. Miraculously, a rather saintly lady had found him by the time I arrived.

And then our week really took a turn for the worse.

B took ill in the early hours of Sunday morning. It seemed a repeat of the same illness he had over half term, three weeks ago. That illness had been identified as the usual we-don’t- really-know virus. His tummy had hurt then too. This time we acted quickly and were with a GP before lunchtime. Then it was straight to hospital, where a series of checks, X-rays and monitoring was carried out.

B is a rather unreliable patient, due to his difficulties in communication. Across the wide range of people we saw there was some worrying ignorance of autism but mostly the medical staff were informed, understanding and good listeners. But they were very cautious about taking steps to operate, because B could not clearly identify the nature of his pain and was either contradictory or too feverish to help them. At one point, he brightened up and my wife took the opportunity to pop home and grab some things.

Which brings us to my difficult decision in the hospital ward. I am about to answer when I hear my wife’s voice. “Shit”, she says, and this time it’s in a tone I have not heard before.

If there is a more frightening experience than watching your child get wheeled off into surgery, I do not want to know it. But off he went, leaving us in what suddenly felt like a very empty hospital in the middle of the night, waiting for our boy to come back to us. This should not have been happening to a five year old.

Ninety minutes later and he was out, as was his appendix. The doctors had made a good call- his appendix was enlarged and the probable cause of his illness. By this morning he was conscious and complaining, so we knew he was okay. We had to explain what had happened and why he was so sore, and he had many questions, including the extent of God’s involvement. We will have a quite poorly boy on our hands for a while, but the ordeal is over and everyone will be alright. I’m tempted to say my prayers were answered, but I know it doesn’t work that way.

The experience has not brought me closer to God; I’m still the heathen I always was. But maybe it has brought me a little closer to my son. Tomorrow I intend to spend the day sat on the sofa with my boy, and he can ask as many questions as he wants. I must be careful not to hug him too tightly.

The ‘M’ Card

What follows is a short account of what happened about two hours after I wrote this week’s blog post, which touched on the issue of stranger danger.

Following his one-to-one swimming lesson, my son and I were in the changing rooms, getting him dry. My eldest son stood with us, sulking because he hadn’t been allowed to swim. Also in the changing rooms were two young men, minding their own business.

Both were naked, but this did not deter my son from marching over to them and asking, “Are you eighteen?” This is something he has been doing a lot recently (the age thing, not approaching naked people) ever since his mum told him that only people over eighteen were allowed to swear.

Understandably, the men looked uncomfortable and awkwardly ignored him. I awkwardly retrieved him, managing to avoid catching their eye (or anything else for that matter). I quickly dried him and we left.

On our way out we saw another man, this time clothed. Once again my son asked him if he was eighteen (he was about forty). Once again the man ignored my son. I realised it was time to remind my son about stranger danger, and warn him off approaching strangers.

“What’s a stranger?” he asked me, and I explained it was a person you did not know. As I was doing so, another unsuspecting member of the public was passing by.

“Are you strange?” my son asked him. The man quickened his pace. We did the same, in the opposite direction. I think my son was ready to follow the man (perhaps he was getting fed up of being ignored) but my iron grip on his hand prevented this. “Let him go” suggested his brother, unhelpfully.

“If you talk to strangers, it could be dangerous” I explained, adding that there could be stranger danger. This in turn led to a long, drawn out conversation, in which I tried, and failed to explain what ‘abduct’ and ‘kidnap’ meant. My son is increasingly brilliant at asking questions, but less good at understanding the answers. We are at the ‘why?’ stage, as in every question is followed by the word ‘why?’ from my son. Most people get this around the age of three, I think. Now, aged five, my son is making up for lost time.

Mercifully, we were at the car by now. We had used our blue badge to enable close parking to the leisure centre.

“Dad, what’s ‘disabled’?” asked my son as we climbed in the car. “What?” I asked, before realising he was referring to the massive yellow letters written on the road.

“This should be interesting” said my eldest.

I’d had enough. It was time to play the ‘M’ card.

“Shall we all go McDonald’s?” I asked.

And with that, the conversation was over.

Even T.A.s Need to Blink

We thought we’d found the perfect pub. Three miles from our house is ‘The Wagon and Horses’, a large country pub with a good menu and plenty of choice for the children. For some time we’ve been looking for a suitable place we could take the kids (or more specifically, my youngest son) to eat. There are only so many visits to McDonald’s that a family can tolerate, so we longed to find not just a family friendly pub, but an autism family friendly pub. After all, normal families do things like eating Sunday lunch out, so why shouldn’t we?

‘The Wagon and Horses’ was perfect, we thought. This was nothing to do with the menu though, or indeed the pub itself. The reason why the wagon was so good was its enormous beer garden. A garden so big, in fact, that our child could run around causing as much noise and general chaos as he wished, and it would hardly bother anyone. We could eat outside on one of the many tables and not have to worry about ruining diners’ lunches because they were confined to a space with the crazy family. Okay, so it meant Sunday lunch could only be a fair weather occurrence, but that was fine by us. It even had a small playground in the garden. We had found our perfect, autism friendly eating environment. Or so we thought. What we were forgetting was our son’s uncanny knack to turn any place into a health and safety hazard.

Like any parent, our child’s well being is foremost in our minds at all times. Unlike most parents, our fears of danger are amplified by our son’s condition. This is not paranoia, over-protectiveness or a case of wrapping him up in too much cotton wool. This is an impulse born out of a tangible reality of risk. Where our child goes, danger follows, or so it seems.

And so the Wagon’s seemingly innocuous beer garden became a place of great danger. There was that gap in the fence at the far end, leading onto a busy main road. There was the thorny bush near the play area- avoidable for most kids but seemingly a magnet for my son. And there was the play area itself, with a climbing frame that could be fallen off and a slide that could be slipped on (why is it he will only walk up a slide and not slide down?). On empty tables were full ash trays that inevitably my son would mess with and at the edge of the garden, a rockery that my son saw as a climbing challenge (and we saw as a hospital visit waiting to happen). There were dangers everywhere.

And they were just the obvious dangers. My son’s complete disregard for ‘stranger danger’ was potentially even more worrying. As soon as we arrived, B decided he would sit not with us, but with another family. Off he marched to a table at the other end of the garden, sitting down in an available seat. By the time I got there, he was holding court and regaling them with tales of who he was and what he had been doing. The family were sat there, slightly taken aback at this very forward, gregarious and possibly bonkers child who had decided he was with them now. I couldn’t apologise enough when I got there. Neither could I apologise enough when he did it three more times, with three other families. Or when he found a stray adult and decided to introduce himself to them too.

Most five-year old children have an innate sense of danger regarding strangers and wandering off. Not my boy. At least the Wagon was full of families and understanding parents. But what about when we’re out amongst the general public? B has always been a flight risk, and he’s getting faster. It doesn’t bear thinking about!

It’s incidents like this that would keep me awake at night, were it not for the fact that by the time my head hits the pillow I am normally suffering from exhaustion and am out like a light. Since a very early age, I have worried about my son’s health, safety and general well-being. Obviously, this is the parents’ lot- it’s our duty and our natural role in life to do so. But when your child has a special need such as autism, I think things move up a level. With my eldest son, I stay on a manageable ‘moderate’ alert level- there are possible dangers but they are not particularly high. With B, the levels range from ‘substantial’ (danger is a strong possibility) to ‘critical’ (he is about to fall into the canal).

In case I’m sounding like an overly neurotic parent, let me share a few more examples. One that springs to mind is a comment in his home/school book recently. B was found with a pair of scissors wrapped round his tongue during a craft activity in school. ‘Where’, you might ask, ‘was his teaching assistant (B has complete full time one to one support in class)?’ Indeed, my mother asked this very question. But as his parent, I knew that the answer was ‘right next to him’. She had simply turned away to pick up a piece of paper and suddenly, there he was, scissors in mouth. As I explained to my mum, even T.A.s need to blink sometimes.

Not that the grandparents are in any position to judge. I am frequently amazed by their lapses in concentration when looking after B (until I think about it and realise I’m just as bad). The thing is, his ability to appear quite normal hides his knack for dangerous exploits. Thus he will be found climbing where he should not, or shoving a pencil down his throat. Like T.A.s, parents and grandparents need to blink (and prepare food in the kitchen, and fetch things from upstairs, and use the toilet). Twenty four hour surveillance is just not possible. Mind you, there’s always room for improvement. Following a recent baby sitting evening, some of our framed photos of the boys went missing. Nanny and Grandad could offer no explanation whatsoever as to what had happened to them, other than that they were pretty sure the boys had not had them. Two weeks later, we found the photos, removed from the frames, and hidden strategically in the garden.

I know all kids do daft things like the scissor incident, but not all kids have clumsy motor skills, a processing delay, an inherent knee jerk resistance when told to stop doing something and an overall blindness to consequences such as severed tongues. My son would not have seen the dangers in such an action and that makes it all the more dangerous. We’ve added this to the other things that have recently entered his mouth at school, including paper clips, stones and most items of clothing. At home he likes chewing the DS and laptop, books, furniture and occasionally, the walls. Ironically, not much actual food goes in.

In my last post I alluded to my son putting things from the garden in his mouth. My words came back to haunt me when, last week, he was violently sick and then ill for about five days. In the end it was a virus, which he then spread around the family (wiping out half term). I was genuinely concerned that he had been eating something untoward from the garden, where he has spent some time unsupervised recently.

When B is ill, it can be a struggle to either identify the illness or eliminate what is not the problem. He is able to articulate that he is ill, but further enquiries usually result in vague, contradictory answers. He will often say ‘yes’ if he thinks that is the answer we want. He’s also been known to say things like ‘my elbow hurts’ whilst pointing to his knee. I dread visits to the doctor when they will ask him what’s the matter, because I know I will have to leap in and make excuses or explain his autism to them. They always say, ‘yes, it’s in his notes’ and I always feel like I’m making a big deal about it.

There is a whole catalogue of scrapes and injuries in B’s five short years. I often cite the breaking of his collar bone as a light bulb moment when we should have known something was up. ‘He has not broken anything’ said the doctor in A&E. ‘If he had, he would be screaming.’ Six weeks later, and the broken bone was identified, as was my son’s unusually high pain threshold. My wife still beats herself up over letting him fall that day, but in all honesty, such things are unavoidable. B is clumsy, does not sense danger and loves to climb. It’s a winning combination.

I sometimes wonder if my son’s full statement of 32.5 hours support was in part influenced by his nut allergy. Educational statement’s are not issued based on food intolerance, I know, but on paper my son’s life threatening allergy (it’s severe) combined with his language and communication delays are a pretty frightening combination. I can imagine any school would be nervous about the potential risks there. It’s a worry for all of us. Thankfully school take the necessary precautions and all T.A.s involved in one to one support have to wear a bright green first-aid bum bag at all times. It makes them easy to spot, although to be honest the look of anguish on their faces, coupled with the loud noise my boy will inevitably be making, makes them easy to pick out anyway.

So as you can see, life with an autistic son is fraught with worries and potential dangers. There are plenty more examples in the many posts I have written over the last couple of years. I can not bear the thought of bad things happening to him. His vulnerability and support needs make it all the more difficult to cope with the thought of bad stuff happening. Happily, as he gets older, he is better able to articulate his thoughts and feelings and I’d even go so far as to say he’s starting to make sense of the world around him. I’m also pleased to say that some support is available for families who find themselves in similar situations- we are very grateful for the Disability Living Allowance we get, the parking badge and the support of the agencies involved with B, not least school.

On B’s knee is a deep scar- the result of an injury that occurred last summer while I was looking after him. Looking back, I should have acted smarter and taken him to hospital where he would probably have been given stitches. The wound is like a scar on my own heart whenever I see it- a permanent reminder that I need to be vigilant and that my precious sons’ health and well-being are the most important things in the world.

My son needs an unblinking, unflinching and attentive dad. I hope I can live up to that.

Pay Attention!

I wonder if any readers with autistic children are familiar with the phrase, “We just thought he was naughty”?

I first heard this from my Mum, around the time she was trying to comprehend what a diagnosis of autism meant for her grandson. It’s a very easy assumption to make about a child on the spectrum. Running off, refusing to do what is asked and throwing tantrums over the slightest thing are all features of autism but could just as easily be defined as wayward behaviour.

Some parent’s dress their children in t-shirts, caps and badges emblazoned with the words “I’m not naughty, I’m autistic.” It’s an excellent way to not only promote an understanding of the individual, but also raise awareness of the condition in general. I take my hat off to you (the one emblazoned with the words “I’m not a crap parent, honest. You should see my other son- he’s quite normal.” I also have a t-shirt that says, “He’s autistic- what’s your brat’s excuse?” and a badge that reads, “Show me a more beautiful child than mine. Go on, just try.”).

I can’t blame my parents for thinking this- I still do it all the time myself. Perhaps it is because he is at the high functioning end of the spectrum, but all too often I find myself getting annoyed with perceived bad behaviour when it is, of course, more to do with his autism than any willful choice to wind me up. Not that my son can’t be naughty at times, just like any other five-year old, but his abilities in some areas mask the inabilities in others. The result can be something that presents as bad behaviour, but is actually much more complex than that.

Top of the list of such things would be my son’s attention span. Like many autistic children, he has difficulty concentrating, paying attention and applying his focus. It’s most apparent in the way he appears to ignore instructions, or never answer to his name. It’s apparent each and every time we try to get him to sit and eat a meal. It makes all our lives a living hell for one hour a week as he is forced to sit and do his homework. It’s tempting to reach for labels such as ADD and ADHD when considering his attention abilities. Perhaps there is some relevance in them, but as I’ve said in the past when considering various labels, autism pretty much covers it for now.

I feel I owe it to my son to better understand his difficulty in paying attention, so I did a little reading up on the subject this week. At great risk of losing my readers’ attentions, I thought I’d share what I’ve learnt.

Attention can be divided into: the ability to sustain attention, to pay attention to relevant information, to shift attention when needed and to remember what was being attended to. My son struggles with all of these things.

One of the most important aspects for what the books call ‘cognitive functioning’ is the ability to filter what is relevant and what is not. We are constantly bombarded with stimuli but can usually sort the meaningful from the irrelevant. Thus background noise and peripheral goings on can be ignored by most of us. Not B though. The slightest sound, movement or change in his surroundings and his concentration is broken. It’s called ‘Impaired selective attention’ and it results in an inability to differentiate what is important and what is not. I guess directing your attention can be difficult when there is so much to direct your attention at.

Most of us find this easy. Rather bravely, I’m writing this while on my own with the kids (rather than waiting until they are in bed). They are happily playing and I am managing to type despite a whole load of distracting noises. In fact, if I can write anything to the sound of Super Mario on the tv, my son yelling “get the power up!” And his brother yelling back “get lost”, then clearly I have superior cognitive attention abilities. I am able to filter out these noises and focus on one thing fairly exclusively, which is something my son struggles with.

In fact, it’s only when the noise stops that I lose concentration. Silence can be a dangerous thing in our house- it usually means something untoward is happening, such as B eating slug pellets in the garden.

We block out these unwanted background distractions unconsciously and without effort, but I think that, for my son, it can be quite an effort. In order to be able to process information, my son has to narrow his attention and shut down background noise by focusing very specifically on one thing. This creates a contradiction- he struggles to concentrate on one thing but frequently can engage very intensely with just one thing. It then becomes harder to divert his attention away from that one thing. The trouble is that the thing he is fixed on is frequently not what you’d like him to be.

Just ask his teachers. The most frequent negative comment we get back from school, either via his home/school book or the dreaded end-of-day chat, is his inability to focus in class. It must be a real challenge to get him to sit and pay attention in class and perhaps the least successful aspect of our attempts to provide him with a ‘mainstream’ education. Mainstream kids sit nicely on their mainstream chairs and listen with their mainstream ears as the teacher mainstream teaches. We know that B struggles in this environment, and it does cause us to question if its the right place for him. On the other hand, his academic progress is really good and I’m not sure he’d find a specialist school a better fit. I find myself longing for an in-between type of school that is geared directly and exclusively  towards my son’s needs. Then I realise that there is- it’s called Home Schooling- and I quickly go off the idea.

It was interesting to read how autistic people rely on ‘mono-processing’ or tunnel perception’. This is when they concentrate on a detail instead of a whole, resulting in very narrowly focused attention. A good recent example of this was when I asked B to use the toilet and wash his hands the other day. Unfortunately my request coincided with my son focusing instead on something he had just read in an atlas. Distractions, it appears, do not have to be tangible- they can be a distraction of the imagination. The end result was still the same, B simply could not switch his attention to the matter in hand- his mind was in the Democratic Republic of the Congo, not in the bathroom. Thus I watched him attempt to apply soap to his hands, before realising he hadn’t yet got them wet, before realising he hadn’t actually used the toilet yet. Everything was in the wrong order because he was too narrowly focused on something else.

You’d think, by the age of five, that a child’s ability to perform these tasks would be completely automatic- done without thinking and drawn from the subconscious rather than the conscious. But children like B have ‘weak central coherence’- haphazard attention because of weaknesses in drawing on pooled information about what’s relevant. My son’s stock of knowledge about what’s important and what isn’t differs from a non-autistic person. He finds it more difficult to automatically recall information because that information isn’t there. At least that’s what the books say. I may have started to drift on in this stage of my studies and got it wrong. B’s not the only one whose attention has its limits.

Olga Bogdashina, in her book ‘Sensory Perceptual issues in Autism’, identifies how autistic children often “appear to ignore relevant stimuli in favour of apparently meaningless stimuli in their environment”. B does this all the time, particularly when you are trying to talk to him. On many occasions I have mistakenly believed I had his attention only to find that his mind was very much somewhere else. A typical scenario would involve explaining to him what is going to happen that day. B puts on an encouraging display of nods and sometimes even eye contact. It ends with me asking him a basic question like, “Tell me what I asked you to do after dinner.” After a short pause, B will say, “Greenland is part of Denmark.” Like a fool, I let myself think my son was actually listening to me! The irony is, his level of concentration was actually very intense, it just wasn’t where I wanted it to be!

Bogdashina goes on to label this ‘idiosyncratic focus of attention’ and says, “we should remember that the decision about which stimuli are relevant and which are meaningless depends on the common stock of experiences and knowledge.” In other words, it might be important to you, but of little importance to him.

Which begs the question, does he ever hear a word I say? Don’t be fooled- my son takes in a lot more than we think. He might not respond to his name, but I suspect that he is often soaking up what is being said. He reminds me of Roz in Monsters Inc- “I’m always listening.” Whether this happens consciously or subconsciously I don’t know, but often he will draw on information he has accumulated and surprise everyone with knowledge we never thought he had.

Shifting attention can also be very difficult for my son. In our busy lives we’re so used to jumping from one activity to the next that we take for granted that our son should be able to do the same. But he can’t always and the result is an annoyed parent and a child who is told off for something he can’t help. It’s so hard sometimes.

Despite the complexities of the subject, and my own difficulties in making sense of it all, I feel like a light has been shone on some of my son’s characteristics. For example, a common problem in autism is the failure to establish and maintain joint attention with another person. As joint attention is essential for learning language, it can lead to speech delays. This makes a lot of sense. Words did not come easily to my son and this offers a further explanation of why that was so. It also suggests that such impairements can, with time, be overcome. My son never shuts up now! A lack of joint attention and focus on others could also explain my son’s clumsiness. He often walks into people  or appears to try and walk through them. This is because his narrow focus is on where he’s going, not who is in the way. Perhaps it even explains his (annoying) habit of asking for something whether there is someone in the room or not. He’s so centered on asking for what he wants that the absence of another person doesn’t even register. Either that or he knows that, with a little volume, his devoted servant (me) will come running anyway.

It’s been encouraging this week to find that many of the recommended strategies for helping my son are things we already do. Brenda Boyd’s excellent book ‘Parenting a Child with Asperger Syndrome’ summarises some of them as:

• make instructions very specific
• don’t overload him
• write things down and use visual aids
• remove distractions
• use ‘now and next’

We do most of these and are getting better at using single word instructions. We’ve also learnt the value of physical intervention with instructions- that is, being physically in his space when asking him something (rather than shouting it from another room). At school, they use exercise and regular breaks to help him focus and I think visual timetables still feature regularly.

To be honest, reading up about things like this becomes tiresome pretty quickly. There’s only so many times I can read the words ‘impaired’, ‘weak’ or ‘insufficient’ before getting fed up. Besides, a lot of the science and psychology of the subject seems to me to point not at a weakness in cognitive ability, but a difference.

Can we honestly say that Stephen Wiltshire’s brain is ‘weaker’ than someone else’s because he can draw, from memory, astonishingly intricate sketches of city-scapes? Are Temple Grandin’s innovations in agriculture, her best selling books and her inspirational presentations an impairment? Is B’s ability to know the population of a vast amount of countries a sign of cognitive bloody impairment?

I’ve always found the phrase ‘differently abled’ rather naff, but the more I think about it, the more I see it’s truth. My boy is not like you and I. He doesn’t see the things we see and he doesn’t think about the things we think about. His mind is elsewhere. But wherever his mind is, he is focused intensely. And though it might not be where you’d like it to be, imagine how powerful such single-mindedness and pin-point focus could potentially be?

I think the world might just be a better place for having people like my son in it.

Do I Tell Him?

My son does not know he is autistic. He doesn’t know what autism is, doesn’t know he is different and doesn’t know it is a life long condition that could define much of what happens to him in the future. And why should he? Though aged five, he is in many ways more like a three or four year old. Trying to explain something so complex seems not only inappropriate but also probably impossible. His relatives don’t understand it, so why would he? Come to think of it, do I really understand it? Would my son even begin to be able to grasp what it meant? And would we be able to get him to stand still long enough to explain it to him?

More importantly, there has simply never been a need for him to know. Watching him today, on a good day (no school and the freedom to do the things he wants to do), he is simply the most happy, carefree child you could hope to meet. His laughter is infectious and his sheer enthusiasm for life a joy to share. Let’s not forget that this is a child who can turn in a heartbeat into a little devil, but even at his most monstrous there is never a sense that being thrown a confusing label would in any way calm him down. My son does not know he is autistic, and that has always been fine.

Until now.

I thought we’d have several more years before this became an issue. I knew that the day would come when it was important for him to know and understand that he was in some ways different to others. We would need to explain what autism was, how it was a part of who he was and how some of the things he did, said and felt were influenced by it. There would be lots to share about how he learnt, how he dealt with other people and why he found some things difficult. He would have questions, and I would have the answers. Or some of the answers. I would not be able to tell him why he was autistic. I’ll never understand why that has to be.

It’s not like it’s some sort of secret. We do not hold back from disclosing our son’s autism to people and we are certainly not ashamed, embarrassed or in some way reluctant for anyone to know. We do not worry about him being labelled negatively or becoming wrongly defined by knowledge of his condition. Understanding autism is central to understanding B and we have no problem with who knows. Because if they know, they can begin to understand. And the same applies to my boy. The day would come when it was the right time to tell him. My guess was around the age of seven or eight.

So when my son recently asked him mum, “Why do I have a helper at school?” we felt somewhat unprepared. He had never questioned his one to one support in school before- it had been a feature of school life pretty much since his first day. My son is not a child who pays much attention to others. I doubt he has ever looked around the classroom and thought, “Why is she only helping me?”

Upon hearing this, my wife felt that the time to tell him could be fast approaching. It would be the first of many questions she said, the first awakening of a curiosity and awareness of his school situation. The first awareness of his differences. I dismissed her concerns. “He’s not even six yet.” I argued, “Wait til he’s seven at least.”

We left it there, but my son did not. Last night, he turned to his brother and asked, “Do you have a helper at school?” followed by, “Why do I have a helper?” Then, to the sound of our heart’s breaking, he said “Am I difficult?”

“No son”, I said, “You’re special.” (what a loaded word that is). “It’s time.” said my wife, as she followed us into his bedroom. I felt a chill run up my spine and a lump form in my throat. Never mind my son being ready, I was not ready for this.

My wife was. She has been thinking carefully about this and getting some advice. But like my own feelings towards the matter, the advice was mixed. B’s key worker from Autism Outreach felt, like me, that he was too young to really know or understand what we were telling him. It would be meaningless and possibly not something he would be able to deal with appropriately. I have visions of him running around the school shouting, “I AM AUTISTIC!” and asking everyone he met if they were autistic. Recently, on ‘Britain’s Got Talent’ a young comedian joked about his disability. Understanding it was funny (but not really getting it) and hearing the word “disabled”, he decided to repeat it lots and laugh whenever he did so. He did so in the innocent belief that others would find it funny too. He wasn’t to know it was inappropriate and it was a passing fad. But I can’t help thinking of it when I consider telling him. I think he’s too young to expect him to be able to handle something like this, and Autism Outreach agree with me.

At least, some of them do. Two weeks ago, whilst on her parenting course (also run by Autism Outreach) my wife raised the issue of disclosure again. This time, the answer was different. They felt that any opportunity to talk about it was worth seizing upon, particularly if he had raised the issue himself. Their argument goes that if our child is bright enough, and aware enough to ask these questions, then we should not lie to him. We should be open about it and honest and we should get it out there. My son should grow up knowing about autism and knowing that it is nothing to be worried about. It should be a part of all our lives from as early as it is possible for him to know about it, because then it will not be an issue, it will just be our normality. As a result, he will quickly come to accept it and better understand his world. It will help us to help him make sense of things and it will mean we can answer difficult questions like, “Am I difficult.”

It’s a convincing argument. Sat there on his bed, my wife was ready to tell him there and then. But looking at my beautiful, innocent child, I simply could not let her. When we tell him, we will have turned a major corner. Some of that innocence will have been lost forever; our little boy will be changed forever. His perfect little bubble of happy, naive innocence will be burst. You have to let your kids grow up, I know, but how can I expose him to such things so early on in his life? Sensing my concern, my wife backed down. But we have promised to discuss it further.

So, do I tell him?

Product Reviews Round-up

Over on the Product Reviews page are a handful of new reviews, including an emotions board, interactive world map and a rather wonderful app involving small blue people.

As ever, the products reviewed have made a genuine impact on my son’s life and are reviewed from our perspective as a family whose lives involve autism.

I hope you will find them useful.

http://autisticson.wordpress.com/product-reviews/

B’s Dad

A request for help

I’ve been asked by journalist Sally Simmonds of ITV Meridian to forward a request for assistance. Sally is currently researching a piece about the effects of diet on autism. She would like to hear from readers in the South of England who may have experience or strong feelings about dietary intervention and the extent to which it helps those on the spectrum.

If you feel you can help she can be contacted at sally.simmonds@itv.com

Thanks,

B’s Dad