That’s odd (Diagnosis Part 1)

L was a very happy baby and developed very quickly. I remember being very proud when a week after his first birthday he took his first steps and started using words very quickly. Within a few months he was constructing sentences and talking very proficiently. As we began mixing with other parents and other children we were struck by how well L was doing developmentally, that his verbal skills were better than other children his age. We had a genius on our hands!

When he reached about 2 years old, he was regularly going to parent and toddler groups. From what I can tell, these are akin to safari parks, where the mom’s (and it is invariably mom in my experience, apologies working dads, but that’s the way it was) sit in a circle chatting with the babies in between them on a soft rug whilst the toddling children run wild around the perimeter. This is where the reports started. It became quite a regular occurrence for L to bite or scratch another child. Given his super-intelligent abilities, it seemed odd that he would react this way with other children. We hadn’t seen any evidence of this at home, he certainly wasn’t a naughty child in the slightest (unless my mind has erased those memories in a rose-tinted format of my brain cells) and this was quite surprising.

We surmised that this was just an immaturity thing, that he would develop soon to learn how to play properly and how to control his temper. He certainly wasn’t the only child to have these issues, though I think that the others were definitely plain naughty rather than confused as they were with my angelic L. Hmmm, maybe there is definitely some proud father rose-tinting going on here, but I digress.

Soon he began nursery which, at the Primary school in the village is held in the school 5 mornings a week. In his nursery class he was amongst the youngest, and the youngest boy. Being born in July and going to school where he had lived only 3 quarters the time of some of the other children, again it was easy to lay the blame of his troubles at immaturity. He would get on very well with the children and with the tasks given to him most of the time, but then there were occasions when we received reports of belligerence, of violence to other children and of plain wanton ignorance. He would struggle to sit on the mat at reading time, preferring to finish whatever he was doing. He would struggle to control himself if someone else was playing with the toy he wanted to play with. The school had a process they called ‘planning time’ and this was heavily adopted in order to help L control his expectations as to what he would be doing. This really seemed to help him – structure, timing, organisation.

It was during this time when the school also identified he had some problems particularly with mixing with other children. No word on any reasons for this at the moment but they did find an additional resource to provide L with supported play time, with taking him and a group of friends he could select to play in their own space. This seemed to really help L with developing his social skills and he enjoyed the attention as I’m sure every child would, but our concerns were starting to develop.

In Reception class L continued to show good development of his academic skills but continued to struggle with the unstructured elements of school life – play time, free play in the classroom and particularly when someone didn’t want to play with him, or he wanted to play with something someone else was using. His reactions were often physical, the biting had subsided but he continued to scratch and push other children.

Throughout this period L demonstrated a really good understanding of what he had done and why it was wrong, and he was always incredibly honest, explaining what he had done and why, but still he couldn’t control himself.

It was in the first year proper of school when he scratched another child quite severely that he was excluded from school for a week. This was something we were extremely upset by. It was his first formal offence and to be suspended for a whole week seemed draconian and we wrote to the school governors to such effect. We didn’t get a reply. However what did start at this stage was the formal referral to a child behaviour specialist. We were happy to go through this process to see if there was any explanation for his behaviour. It was around this time when Autistic Spectrum Disorder was mentioned and to their credit the school immediately put in place a few strategies to help L cope, assuming that the strategies usually put in place for a child with ASD would help. These included a visual timetable, enhanced planning sessions and various tools to help L control his temper, from giving him a place in the line at the end of playtime which was his to tolerating his outbursts and unwillingness to participate rather than arguing or forcing him to do things he didn’t want to do.

It was at this stage when we thought the end was in sight, but this was just the beginning.

Second time unlucky

There are times when you think you are managing things well and getting along brilliantly. When the future looks full of optimism and hope, where dreams can come true. Then there are those occasions when you realise maybe life will be more of a struggle, when there are things beyond your control or capabilities.

That's quite an opener for a post on this blog I realise, but sometimes you can't help but feeling like every moment and reaction is destined to be repeated forever, ad infinitum. I felt this way a couple of times this week.

In our experience thus far, L's behaviour has followed quite a cyclical route, peaks and troughs. There are clearly times when L is relaxed and happy and things don't tend to disturb him at all, when you can ask him to put his DS away or get dressed without any reaction. These periods tend to last a few weeks and you begin to feel optimistic. We realise that these are the good moments and that things won't stay this way, but you can't help but hope that maybe this will be it and all will be well. Then there are times when you know he won't cope well and there is little you can do about it. Moshi Making Party was just such an occasion.

7 friends came around and the plan was to spend 2 and a half hours holding the party. I knew that this would be a stretch for L. His temperature has always gone up during parties and when he is physically hot, he also reacts with fire sometimes. So we spent a delightful hour or so making Moshi's from Fimo. An activity L would always love due to his creative mind and slightly obsessive nature. But you can only spend so long doing this before the kids get bored and go off to run around the garden. We didn't really have any other plans and were happy to let them go off, but after another half an hour of running around the cracks began to appear in L's demeanour. First it was that no one wanted to play the games L wanted to. I refer you to my previous post about how L plays with his brother in a dominant directorial manner. The other kids got fed up of this I reason and decided to play their own games. L began getting upset very quickly so we tried to intervene by helping him negotiate with the other children about what to play. But L was in no mood to compromise and ended up having a tantrum about nobody wanting to play with him.

L spent the remainder of the party either taking himself off into a corner somewhere and sulking or shouting and having a tantrum. The other children carried on playing as we tried to encourage them not to worry, but it was a very stressful moment for us all.

It is times like this when L often finds solitude to be therapeutic and left to his own devices often calms down quite quickly, but trying to be good hosts to the other children I don't think that I was willing to let him spend the rest of the party on his own. I realise now that I shouldn't have pestered him or tried to convince him to join the party again, that he should join the others for dinner or risk not getting anything. Unfortunately what I perceive as doses of reality he thinks are threats and suffice it to say does not comply accordingly.

In the end I lost my own temper and stormed off to play with the other children and it is this I find most difficult. I can deal with L when society allows, in my own home, in the car, in our own space. But when there are other social rules to follow, in my haste to teach L how to cope with them I try and force things onto him too quickly.

I see what I have done but my own desire to be a good host or do the right thing often conflicts with allowing L his own space. So it is difficult to know when to push and when to ease off. When to allow it and when not to, if indeed there is really any choice in the matter.

So these are the bad times, sometimes bought on by some external event as in this case, other times difficult to predict.

It has also been the last week of school and no doubt a little unsettling as they all prepare to move on to the next year, and whilst we certainly anticipated the difficulties, when they happen we still have a lot to learn about how to cope.


I just wanted to take a moment to thank a couple of people for the inspiration and design of my blog.

Phil, who inspired me with his own blog of his daily activities and worthy of a read for anyone interested in the thoughts, recollections and tales of a nihillistic, self-loathing 30-something man.

Days of Enlightenment

And secondly, Al, who helped design my simple yet effective blog with his artistic skills.  Al can be found at various times of the week (but not the times one would perhaps expect) at the Handy Bookshop.

The Handy Bookshop



Happy Birthday (Part 1)

Today was L's 7th birthday party. As with a lot of kids (or so I imagine) we had a family party today in advance of his friends coming for a Moshi Monster Making party on his actual birthday in the week.

Maybe I am incorrect in assuming a lot of kids are having a Moshi Making party of course, but having one for family and a separate one for friends I think seems normal? Anyway, this was the first time since I started this blog that the family had been together and I have to say I was pleased not only for the comments I got about this very blog, but also the affect it seemed to have on how people coped with L. To explain a little more there seemed to be more tolerance of L's behaviour. Not that anyone acts out of anything but kindness usually, but today I think that there was an air of calm in the house which hasn't always been the way of these events in the past. Maybe it was L’s advancing years, maybe it was H’s distracting naughtiness, or maybe it was simply karma, but it was definitely a relaxing Sunday afternoon event.

L was up at 6am this morning. Not a totally unusual occurrence, he usually wakes around 6.30 much to the frustration of my wife and I. Whilst I have never been a morning person, my wife used to be, but her superhuman efforts in managing a part-time job, motherhood and a thriving home based business has taken its toll in her ability to leap out of bed at 7am every morning. For a while this led to a lot of bad starts to the day, with L seeming to burst awake and into life with a beautiful enthusiasm which was usually snuffed out by his sleeping parents, desperate for a few more minutes of blissful sleep before submitting to the day. This would generally result in a rapid argument with L becoming frustrated with our laziness whilst we are frustrated by his early morning energy. I think for a long time this resulted in getting him off to a bad start for the day and summoning the Black Dog to heel in wait.

We decided that we should change our ways and now we take it in turns to claim a lie in each morning while the other gets up and goes downstairs with L. He doesn't like to go downstairs on his own, perhaps an element of anxiety in him if questioned about this, but now we do go down with him if asked, albeit in a zombie-like state until the early morning Caffeine kicks into our bloodstream. So today, with the extra early start and lost of jobs to do to prepare for the lunchtime celebrations I crawled out of bed and headed downstairs.

After refusing the invitation to go back to sleep, I was concerned that come midday, L would be tired, hungry, excited and the event would be chaotic and noisy. In the cocktail of Autistic stimuli, this is the Jaeger Bomb with Tequila Slammer chaser. And yet, events passed off well.

L did experience some of his trademark behaviours, after the initial present giving was over he retired to the dining room alone for a good hour or so to build his Lego Hero Factory model (a large, impressive scorpion-like creature). He sat on his own at the dining table, I think comforted by the hubbub coming from the garden and other rooms, but unbothered by other people aside from the occasional querying face at the door checking he was ok. I think when he responded he was fine, he was left to it. In the past he would probably have been insisted to join the events, coerced into the stimulating cocktail of noise and activity and an over-heated L would soon crack into a tantrum, or burst into tears at the slightest annoyance.

Don’t get me wrong, I went in myself to try and convince him to join the party, but I did so in a way which, whilst starting to put pressure on him and started to get him upset, I managed. So, I neglected my barbequeing and hosting, people went without drinks for a good 20 minutes or so, and I sat with my son in the dining room building Lego Hero Factory. They are tricky little things. After completing it, we hugged, I calmly explained that the party was for him and he should come and join it and, after refuting his accusations of people not wanting to play with him in the way he wanted, we rejoined the party.

L was spoken to by friends and relatives and answered back calmly. When he escalated and went to shout and disagree with anything, it was quietly dropped or the subject swiftly changed. All in all, where parties often ended with at least one bout on the time-out step, yesterday was calm and enjoyable.

Thanks family and friends, a great day for us all I think!

I will report back on Part 2, the Moshi Making Party, later this week!

Black Dogs and Rainbows

I was talking to a colleague about this blog and when I said what it was called, after explaining it’s premise, he struck upon a rather beautiful assumption.

He thought that ‘Life Without Grey’ actually referred to a life full of colour, without boredom, full of excitement.

I think that there is an element of truth in that. Seeing the excitement on L’s face when I simply say ‘yes’ to any kind of simple request actually lights up the room and is a thing of beauty. I don’t think that this is any different to any other child being told that he can do something, or have something he wants – kids love parents saying ‘yes’ to them and I would strongly encourage any parent to adopt Danny Wallace’s example from time to time (for the uninitiated, I refer to the book Yes Man, later a Jim Carrey film, wherein the story goes that a boring chap decides to say yes to any question he is asked and leads a rather interesting, exciting, scary and certainly different kind of life to that he had previously experienced).

Saying yes to L seems to have a more powerful effect though because what happens when you say ‘no’ is so different to how H reacts. One of the strongest ‘symptoms’ of L’s autism seems to be his inability to gauge his responses and his reactions according to any given situation. Instead, his reactions are often extreme and certainly involve throwing himself about and shouting. He often screws up his face and growls at me, an improvement on previous behaviour where he would scratch or hit, but still extreme. I don’t know what has caused this improvement, whether it is the fact that I no longer match his reaction, instead I (try) and stay calm, perhaps even calmer than I originally was, wait a moment, take a deep breath and then try and give him a hug or talk him down, or sometimes just letting him be or distracting him works as well, but not every time.

It is not what one might call a Black Dog in the traditional Churchillian (or Nick Drake) sense, that of depression, but it certainly to me seems animalistic, scary almost and certainly beyond L’s control. I am scared of dogs having been bitten by a rather vicious one on my paper round some 16 years ago (I still bear the scar on my knee). It didn’t like my bike. I still completed my round you will be glad to know but my sock had to go in the bin (according to my mother, blood doesn’t come out in the wash – this was pre-Ace Bleach days you understand). Anyway, I digress, L’s reactions can be quite scary because they are so surprising, so I hope you don’t mind me exercising a little poetic licence and calling this a ‘Black Dog’ reaction.

So life is one of supreme happiness, colour, brightness, thoughtful and intelligent conversation and cuddles, but it is also one constantly stalked by a Black Dog, waiting to leap from the bushes and bite my knee.

The Director

One of the things I have noticed when watching L play is his tendency to direct action rather than be a part of it.

For example, when playing with H, most of the time L is instructing H on what to say next, what to do next, what will happen next, and then expecting H to follow exactly. If H were to try and do something differently, then L will react either with anger, or by simply storming off and not playing any more, saying how H is being unfair.

I find this incredibly interesting and often wonder if this is consistent with how he plays with friends at school, and perhaps is a cause of his issues in the school environment from time to time? Young boys are quite rough and tumble, determined and change their minds all the time. For L, this seems to me to be a nightmare of huge proportions – children not doing what he expects they should do, or not doing what they say they will do. There have been occasions when L has lost his temper because someone has lied to him. Upon further investigation it becomes apparent that actually, the child just changed their mind and decided to do something different instead of playing the way they set out initially. To L, this abrupt change of plan is entirely unacceptable and a source of immense chagrin.

In his playroom, with his little brother, L is the king. H adores playing with L and often plays along exactly as instructed. I love the way they play together and how they share and interact, but it is apparent that this is invariably on L’s terms.

I wonder then how this may look in the future, perhaps when L is 16 years old? Will he be able to share and play along with other people in a negotiated fashion, where everyone’s input is considered and the best for all people is the final way forward, or will he become a dominant force and always ensure he gets his way in things? Either is fine, frankly, but what if he becomes disillusioned, doesn’t have the force of will to make people do things his way and everything is frustrating? How will he behave and interact with others?

What can I do to change this, what do I need to do to try and give him the tools to manage these situations?

In some ways, I have already touched on this subject, the lack of compromise or negotiation, but in this example my concern is more about how to interact with others, how to bounce off people, develop your ideas by listening to others?

The Power of Compromise, the Development of Negotiation

I mentioned in my introduction that it is L’s younger brother H and how he has developed which has really highlighted L’s differences in his development.

As a 4 year old, H is now developing skills of negotiation. He will use emotional blackmail, reasoning and compromise to get what he wants. Don’t get me wrong, he is still a stubborn little bugger, but he demonstrates an understanding of manipulating my wife and I into giving him what he wants in a way L never has. For example, he doesn’t like fruit. He won’t eat fruit and despite bribery, threats and coercion, insists he will never eat fruit.

Me: “H, just eat a bit of apple and you can have some sweets”
H: “I don’t like fruit Dad and I will never eat fruit. Even an apple”.
Me: “but if you want some sweets then you need to eat some apple, just a bite”
H: “Can I have some sweets if I lick an apple?”
Me (laughing): “No, but if you just have a nibble then you can have one sweet”
H: “Can I have one sweet if I lick an apple?”
Me (cringing now): “No. You need to take a bite and swallow it, it’s nice, you’ll like it”
H: “No, I will never eat fruit. I don’t want sweets anyway”
H wanders off, victorious.

He has now gone 3 weeks without sweets, and of course, without touching any fruit.

Now, the same conversation with L (who actually loves fruit and all sorts of new foods, but as an example I will pretend he doesn’t as an illustrative tool):

Me: “L, will you try this apple”
L: “I don’t like fruit so no.”
Me: “You can’t have any sweets until you try some apple”
Me: “Try some apple first and you can”

L storms out of the room, sits in a corner and cries, shouting various things until he calms down and potters back in to watch tv.

What I am trying to illustrate here is how H will negotiate, will try and find a way he can get what he wants, will try different approaches and weasel his way in. He is starting to use emotional blackmail now, being super sweet and nice or being grumpy and having what I would call ‘strategic tantrums’. Not out of control screaming fits but having a tantrum which, if I were to offer him some sweets, would stop instantly and be replaced by a beaming smile.

L instead cannot see that there might be a way to get what he wants, instead he either can have it or he can’t, and if he can’t then it is disastrous and he reacts as such.

It has taken a long time to realise that H’s behaviour is what one might call ‘normal’, though as you will note I do try and find alternative ways of saying that throughout these entries, for what is ‘normal’ anyway? Well in this case, normal is the development of a set of social skills which you learn through life in order to manipulate and control people to get what you want. These are life skills which become more subtle and sub-conscious as we develop, but are there nevertheless. I sometimes wonder how L will deal with these situations in the future and what my wife and I can do to help him with this.

My approach today will be to try and teach L that negotiation and reaching agreement is important to get something rather than win or lose everything. He has a very good brain, can talk and understand things very well, so I am hoping tat by taking a logical approach to a very illogical subject such as human behaviour, then at least he can understand what is happening and how to respond accordingly. I doubt this will ever become sub-conscious as it does to most of us, but perhaps with his intelligence, we stand a chance of helping him control this.

I will report back in a future entry.

Poem from ASD Friendly website (to be credited)

What do you see??

What do you see when you look at my son?
A naughty little boy with a tired out mum?
A boy who at will, hits kicks and flaps,
I hear when you say “what he needs is a slap”

A boy who will scream at me, kick me and shout,
"If he were my child, I’d soon sort him out."
You see when he refuses to stand in a queue,
But you don’t understand, he doesn’t see the world like you.

Loud noises and strange smells make him feel insecure
The world for him is scary, that’s for sure.
A child who is noisy, clumsy and loud
BUT you don’t see all the things that make me so proud.

My blue eyed boy who I cherish and love,
Who was truly sent from Heaven above.
When he said for the first time “I love you mum”
You don’t feel my joy, how could I be glum?

The time on the beach where he first saw a shell
If only you could see how that made my heart swell.
When he orders his trains all in a line,
That is what makes his world seem fine.

I sometimes wish that just for a day
I could be in his world to make things ok,
But for his autism there is no cure,
would we really want it, his love is so pure.

He is my son, my precious little boy
And I am truly blessed, he has brought me such joy.

The Diagnosis

In June 2012, aged 6, L was finally diagnosed as being on the autistic spectrum. My feelings at this point were strangely relieved and happy that we had come to a conclusion. Of course, we hadn’t. This is just the start. Or rather, the end of the beginning.

As I said in my introduction, Autistic Spectrum Disorder (ASD) is not a disease with a defined set of symptoms that can be treated with a simple pill. Instead it is a condition specific to each child. It cannot be fixed at any point on a scale or defined in any way which is fixed.

My feelings were of relief and satisfaction because we had struggled for 2 years to get to this point. L had long exhibited symptoms of strange behaviour and throughout my entries I will regale you with these tales of our experiences, but they were specifically centred around having difficulty in social situations and if something wasn’t right he would have a throw-down super tantrum, regardless of whether it was a small insignificant thing, or a major problem. The reaction was the same. Initially this would be with children invading his personal space, or not playing by his rules in a game, and his reaction would be to bite or scratch the other child. I am pleased to say we have managed to amend this behaviour a little to remove the physical harm element in most cases, but still, everything is black and white. Right or wrong. Good or bad. This has been my overriding experience of dealing with L’s behaviour. He is destined to live a life without shades of grey in between. Without truly understanding compromise or negotiation.

Now I am sure that this will change in the future, that he will learn the benefits of compromise and that there are scales to things, however he will not learn these naturally like the rest of us may do and instead will need to learn the logic behind why behaviour has to be amended to the situation. Accepting something you don’t like without saying anything, complaining calmly, being grumpy, shouting, shouting and waving arms about, storming out in a huff. Think how many different methods you employ to express your dissatisfaction with a particular situation and how you gauge the right weapons to employ depending on the situation. The social rules you learned in your very early years. It is this which L finds most difficult.

I will go through the process we followed to get this diagnosis in a future entry, but to me it seemed to be hampered by the fact that L had no problems communicating. In fact he has always shown very good verbal skills. Talking shortly after his first birthday and using full sentences by 18 months old. He is honest (brutally so, again perhaps as a result of his condition) and understands what has happened and why following an incident. To some he may be seen as uncaring perhaps, but again this is not the case. He is loving, cuddly and happy to hug and be hugged. Throughout the diagnostic process, the assessments and tests seemed geared towards having difficulties in speech development or communicating, but this wasn’t the case with L. This seemed to make the process all the more difficult.

I am hoping that through this blog I get across the message that L’s ASD is not what I would describe as acute or severe. It does not suggest he will not be able to live a normal life, whatever that means and it does not suggest I am in any way disappointed with my son. Crikey, that seems a strange thought to have. I would never be disappointed in what a wonderful child I have, but we pursued the diagnosis because we wanted to learn how to manage him, and ensure his school likewise has access to the necessary resources to do so as well.

So now we had a diagnosis to explain this behaviour and I was, frankly, elated.

L has been diagnosed as being on the Autistic Spectrum. A collection of symptoms and conditions which are all linked by a similar set of experiences in terms of their relationship with social development, communication skills or cognitive processes. The conditions made famous by films and books are also a part of the same spectrum. Rain Man’s Dustin Hoffman playing the Autistic Savant, Asperger’s Syndrome made famous in the Curious Incident of the Dog in the Night Time by Mark Haddon and many more. These conditions are part of the Autistic Spectrum, but the symptoms in these cases are consistent among all people with that specific condition and therefore they can be pigeon holed with a precise name. For the vast majority of people on the Autistic Spectrum however, life is not living in a pigeon hole, it is living a life of pick n’ mix symptoms and behaviours. Wondering whether each tantrum or grumpy face, each reaction to being told ‘no’ is just a ‘normal’ reaction to something, or is this an ‘Autistic’ reaction caused by his condition? The answer of course is both. They are intertwined. L is a boy growing up, maturing and living his life and everything he does is as a result of everything he is.

So how do we deal with that? Well, the same as we do with his little brother H, but we just need to treat him as an individual. The same as we do with H.

Life isn’t easy, we are just presented with different challenges along the way.


I am a father of two boys, at the time of writing, aged 7 and 4. L (7) has recently been diagnosed as being on the Autistic Spectrum and H (4) is showing no signs of having a similar set of needs. It is H’s experiences which have shed light on how L has developed over the years and what the differences are between the two of them.

I will be writing this blog for several reasons. Mostly it is to share my experiences as a father, with I hope some input from my wife as well, of raising a child on the Autistic Spectrum. It is also however a chance for me to seek feedback from others in similar situations, to share what we have learned in the hope that it helps others, and more importantly to develop relationships with other people in similar situations.

One thing is clear from our experiences so far. Autistic Spectrum Disorder is not HIV or AIDS, it is not Leukemia and it is not Psychosis. ASD is not a disease caused by a virus or infection and there is no cure. ASD is just a way of describing someone who behaves differently to the accepted norms of society. In some ways and in some cases, to the extreme, in other cases perhaps just a bit odd. It is often said that were todays diagnostic tools available in the past then a great number of people would have been diagnosed who instead were just seen as eccentric, difficult, weird or crazy.

I have named this blog ‘Life Without Grey’ because I would describe L’s behaviour as very black and white. There is very little compromise in the mind of my autistic child and I feel this is one of the main symptoms of the condition. Throughout my entries you will see how certain experiences have further illustrated this, and indeed in the early days it was the rules of society which L didn’t understand. Complex, variable and hard to explain rules which we all learn early on at a young age which are simply unfathomable to an autistic child, in my experiences at least.

I hope that by reading and sharing in my experiences, to establish a wider appreciation that my son, and everyone with this condition, is in fact a normal contributing member of society, but that they do need a different kind of support and care which people struggle to appreciate.

I have considered my approach to this blog and whether to keep L and H anonymous or not. I have decided to use an initial as their names, along with mine and my wife’s but hope that this doesn’t affect the openness and honesty of the blog. You may disagree but this is my blog of personal experiences and therefore I hope that I am forgiven for choosing this route.

Finally as a disclaimer, I am not a clinician nor do I claim to be any kind of expert in the field. I will share my own points of view as honestly and openly as I can and this may upset some people or cause offence. Please note that I in no way intend to offend anyone and as I learn more I may change my views on certain points. That is parenthood for you and I make no bones about it. If you don’t like what I say, leave. If you disagree with what I say, please leave a comment. If you like what I say, come back and tell others.