Special Needs World - aka L'Land

It's half term week and we decided to take the boys away to Legoland for 2 days.  We managed to keep it a secret which was no easy task - not because they were working us out and finding little things around the place, not even when my sister blurted it out over the dinner table, bt because we were excited too and frankly desperate to tell them!

On Monday evening we told them we were going away and would be spending a night in a hotel.

They love hotels - the adventure of sleeping in one room, living together in a small space, sleeping in such close proximity to one another, it is the most exciting thing in the world.  So, they were happy.  Not once did they ask about why we were going away!

En route to Windsor, we still managed to keep it secret up until we were 5 minutes away.  We turned around and told them and they were ecstatic!  It really is worth the wait if you can keep it a secret, to see their faces was fantastic.

So, we went into Legoland and faced what to any unprepared parent of an autistic child would be hell on earth.  In order to get into the place, through the gates into 'The Beginning' where the shops are, took 2 separate queues.  The first to turn our piece of paper confirming our booking into a ticket, and a second to scan our ticket through the gate.  We were blessed as our two boys waited patiently, however we knew that once through the gate, the queues would continue.

Now, not one to miss an opportunity to double your ticket price, Legoland offers a system called Q-Bot.  Q-Bot works by allowing you to arrive at a ride, start Q-Bot and then return when it is your time to go on the ride.  Q-Bot queues for you effectively.

This is the theme park class system, where the upper 'Q-Bot' class get to spend their £15 per person and jump the queues, whilst the lower proletariat wallow in queues for hours on end dealing with impatient youngsters.

An autistic child can struggle in this environment, where the queue presents so many questions and prompts so many regulations as to how to behave.  We were fortunate in that L behaved impeccably most of the time, and besides, he wasn't too bothered about the rides and preferred admiring the lego models and looking forward to the evening in the hotel!

It did get me thinking though - would Legoland consider having a special day for Special Needs Children?  On this day, everyone gets a Q-Bot, there is lots of space and patience all around, people are there to answer your questions and those of your children and most of all, eveyr other parent in the place has experienced a similar set of 'non-typical' behaviours to you, and therfore you are not some social pariah as soon as your youngster lays down a fat tantrum in the middle of the walkway between the shops and the toilets.

There is an excellent local play centre near us, Jungle Boogie in Codsall, and they are going to be trialling a special needs evening where those parents of children with special needs can come and get some peace - or perhaps not so much peace, but at least a sympathetic ear or knowing exchange when those sweet adorable volcanoes erupt.  I realise that this is still a rather open invitation - that parents of children with aspergers may share very little in common with a deaf child, but at least it is a start, a gesture which I think marks a welcome opportunity and I hope that all local readers in the area give them a go.

Anyway, it got me thinking more, why isn't there a special place to go - not just an education centre, or a garden park, but an entire theme park, dedicated to children with special needs?  With special sensory areas - not a room but an entire walkway the size of a roller-coaster.  Pitch black play rooms, monitored by infra-red cameras of course, but where the seeing are disabled, and those without sight are advantaged.  Where there are no queues, where people can book slots on the rides, and also explore how they work, get tours of the roller-coaster underside for those high-functioning autistic children obsessed with how things work, where the roller-coaster can go at different speeds depending upon the disposition of those riding.  How about a theme park where the needs of the child who isn't into the thrill or the adrenaline, but who is bored by Peppa Pig Land, or Thomas Land, or simply too old?

Special Needs World (I'm still working on the name) or L****Land as my son already calls it.

Does anyone have a large plot of land in the Midlands and investors willing to invest c. £50M on it's development?

Let me know.


Black & White Boy

At the moment I am considering whether to actually implement the visual timetable at home for the morning routine.

My wife and I have discussed it a few times over the last few months but never felt it was definitely necessary, but at the moment I think that perhaps it is time.

For the uninitiated, a visual timetable is just a row of pictures or words which tells L what to do and in what order.  So for example, the first picture may be of him waking up, next its him going to the loo, then choosing his breakfast, then waking mom or dad up, then eating breakfast etc. etc.

L has a habit of becoming deeply obsessed by things, whether they be TV programmes, computer games, moshi monsters, anything.  Once he is in an obsession then he rarely talks about anything else, sharing every last detail with us.  Now, I don't have a problem with him sharing this with us - sometimes I encourage it.  It is a rare gift to have such a detailed understanding of something and this is where I think his future lies, in having that depth of knowledge on a certain subject.  Let's hope its banking systems, or maybe music, but whatever it is, it doesn't concern me that he won't be able to hold down a job in the future.

Now, at the moment, as we gear up towards christmas, L has been asking for a Skylanders set for the Wii.  He has been asking for this for about 18 months now, so we are going to let him have one.  In order to prove to us though that he can handle it (bearing in mind previous comments about time on the computer and his very poor level of competitiveness) we have said he can have half an hour on his DS every day.  Between us, my wife and I have also agreed that if he is naughty, this isn't something we will take from him - we feel he needs to play regularly in order to learn to control himself.  It may be folly, but thats what we're trying at the moment.

Anyway, in a morning now, as soon as he wakes (about 3 hours too early for me, about 2 hours too early for my wife!) he is asking if he can have his DS time.  We have two more rules in the house, firstly, no computers before breakfast, and secondly, no computers before school. 

Having come off the back of the weekend, this second rule caught L a little by surprise and led to a tantrum.  He has been struggling with the morning routine for the last few days though, hence my thought about the visual timetable.

What does amaze me though, rather wonderfully, is that as soon as he gets to school, he seems to be a wonderful young boy, and when he comes home he is happy and courteous and accepts when he is asked to come off his DS.

At the moment (and I am acutely aware that this is a time-limited offer), we have two L's.  The first is struggling to get through the morning routine, the second is a typical happy boy.

So, until the next report of a playground incident, or a fight with his brother, or a tantrum in the early evening, I am happy to report that life is good.  As long as it starts after 9am.

Ros Blackburn

We had the pleasure the other week of spending an evening in the company of Ros Blackburn as she delivered a talk for local group of parents and teachers dealing with autism.

Ros Blackburn is severely autistic but makes a living from public speaking and should anyone get the opportunity to see her speak then I would certainly encourage you to.

Firstly, she is inspiring in that despite her autism (because of her autism) she has forged a living. She's not dead in a corner, she isn't in prison, she's a normal human being making a living. This is a particularly optimistic note.

Now during her talk she touched on something which I think applies to L. I should say that she is quite forthright in her views, especially that if a child can do certain things then they are most certainly not autistic. I disagreed with this but clearly she has a very clear, experienced and specific view point. The talk dealt with severe autism and conditions such as dyspraxia and aspergers syndrome. She doesn't really deal with the autistic spectrum, as per the title of this whole blog, she too sees the world in black and white which is of course perfectly understandable.

Anyway, she starts off by stating that she only knows what she is taught shown or told (again, I have no notes to reference so I may be paraphrasing). This means that, as she beautifully explained it, she has no gut to advise her. She can't rely on instinct to tell her what's right or wrong. She needs strict rules to follow otherwise she is stuck.

Consider for a moment the following sentences and what you would do for each...

"can you open the window?"
"can you speak French?"
"can you swim?"

You would perhaps respond to each question differently. An autist would instead refer to their internal rule book, perhaps deciding that "can you...?" means answer yes or no. Or, it may mean go do it please.

In my mind as she was explaining this I thought well why don't you clarify the question? I understood that the question is ambiguous, that "can you swim?" could be interpreted as go and find a swimming pool and jump in it and swim, and that there is no reference point in the autistic mind to try and figure out which is the appropriate response, but I still don't quite understand why you can't clarify the question.

I suppose this would mean clarifying everything - there must be so much that we take for granted that we understand, but how do we learn these things?

Anyway, the lack of a gut feeling certainly reminds me of L. Perhaps not do much in the misunderstanding but certainly in the need to have things examined, to prepare himself for what is about to happen. His reference points which most of us use - previous experience, mirroring the reactions of others, common sense - are all somewhat distorted and so he deals with things differently.

It is a testament to us that we manage this quite well with him.

Even if I do say so myself!

Being reborn

We have taken the decision to discuss L's condition with him. He has always been an intelligent young man and his issues mostly stem from frustration as a result of some kind of misunderstanding, so we decided to tell him about his condition and what it means.

He took the news with a typical stoicism which he seemed to take as an understanding of why he reacts differently to other people. It helped that we had a book to read with him called "so I have autism" or something like that (I realise I get these details wrong quite often, much to my dear wife's chagrin - if I am wrong on his occasion then I will come back and edit this post.).

It lead a few days later to a discussion which is heart breaking in a sense. L was asking about his autism and wondered if there was any cure.

"not that we know of I'm afraid, we just need to help you live with it"
"can I go back to being unborn and try again?"

Perfectly reasonable question I think, but when delivered with the logic and burning desire to change things, it was somewhat heartbreaking.

It was my wife who was asked so I tell this story from her perspective (and again likely with a load of details missing or wrong!) but it was nevertheless very affecting for us all.

The Diagnosis: Part 2

This week we finally received our formal letter confirming L's diagnosis on the Autistic Spectrum.

To say it's been a long time coming is an understatement and whilst I don't doubt the care that everyone has taken over the process, and of course the need to ensure it is right, there is clearly a problem with the beaurocratic process behind those giving the care which can be at best frustrating to parents, and at worst damaging to a child's education, welfare and wellbeing.

So, following on from my blog some time ago on our initial suspicions with L and the incidents which triggered our initial referral, I thought I would go through the rest of the process we went through.

Following L's week long exclusion from school as a result of a scratching incident - a reaction which seemed wholly disproportionate and out of the blue and which garnererd a strongly worded letter to the School Governors to which we yet await a reply - we were referred to a child specialist GP.

This was some 2 and a half years ago, around April 2010.

The GP we met, following an extensive search for an appointment with her, was very kind and after we described L's behaviour and following a short assessment of him herself, she asked us to complete a questionnaire.  This was also sent to the school in order for them to submit their responses as well.

It took almost 6 months before we got to see her again - mostly due to delays from the school in replying to the questionnaire.  In their defence, they did say they completed it and that it must have got lost in the post.

Following our second visit she referred us into the local Children's Hospital where we met with a specialist in Child Mental Health.  This was January 2011.  Again L was assessed, asked some questions, and we went through the situation as we saw it.  We were very clear as to what the symptoms were.

At this time, L's behaviours were of the order of over-reacting, physically harming other children and generally being on a hair-trigger any time someone was in his space.  He held no eye contact with anyone and did not play well with the other children at school.  He would act selfishly, almost ignorant to the existence of other children when he was trying to do what he wanted.  He did have friends, quite a few very close friends as well, and his social skills, whilst very specifically focussed on himself in an egocentric fashion, were there.  One of the key facets of Autism is the social disengagement.  The lack of a reference point to other people, and the inability to empathise.  L did not exhibit this behaviour in a pure form, although it was clearly a part of his non-typical resopnses.  This is part of the reason why there is an Autistic Spectrum, but also makes diagnosis very difficult.

There followed a series of meetings with the Educational Psychologist at school, with the Children's Hospital teams and with the specialist GP.  Every meeting required us to chase up, ring and demand progress to be made.  None of the meetings or appointments were coordinated or less than 3 months apart.

Eventually (probably around autumn 2011) we met with someone from the Family Support Service who acted in our interests.  It was quite surprising having by this point spent 18 months bouncing around the system that actually someone was there to help us.  And I am not referring to L, L was always in receipt of the best and most sympathetic of care and attention.  Us as parents.  Someone to help us navigate through the process, to chase up appointments, and to give us answers as to what should be happening next rather than being left to our own devices to guess and decide whether we were just being pushy or if actually we should have taken the next step by now.

It was shortly after this that the official diagnostic assessments took place.

This took the form of L being assessed by a specialist, with us the other side of a one-way mirror.  I found the process intriguing and picked up how L was engaging with her in a number of ways, but then failing to engage in some other very specific ways.

A good example of one of the exercises to illustrate this point was when an imaginary sink was drawn on the table with the lady's finger.  She explained where the taps were, where the soap was etc.  Then she placed a sponge on the table.

She asked L to describe how he washed his face.  Duly, L picked up the sponge and wiped his face.  He was told to make sure there was water on it and duly pretended to turn on the tap.  Next she asked him to brush his teeth, with no toothprush toothpaste or taps visible to start the process, L struggled.  The difference was that the sponge acted as a literal trigger.  Something he could hold.  He could then imaging the rest of the bits.  When asked to imaging the whole lot, he simply couldn't do it.

The result of this assessment was inconclusive.  I recall the feedback we had with the assessor afterwards, how I highlighted these areas where L struggled and how it was reflected in how he behaved at home.  Yet, it was inconclusive.

We continued our demands for an assessment and eventually, a few months later, we received a visit at home from the chair of the ASD assessment panel.  She viewed L at home and a few days later at school.  She told us afterwards that L was borderline from what she had seen, but what was clear was that the school were coping very well with L's needs and managing his behaviour well, and that without this, he probably was on the ASD spectrum.

So, now 3 months after the verbal decision was communicated to us following the meeting of the panel, we have the letter.

About bloody time!

Liveblog: The School Disco

Earlier this evening, I escorted L to the school Autumn (Fall for my US readers) Disco (a form of dancing  often to popular music for my US readers, not featuring any Trammps).  I decided to Liveblog on Twitter the evening and to save you guys missing out, below is the transcript...

School disco live blog in effect. Blogging it Gangnam Style

For the uninitiated this is in support of my blog about raising an autistic child. http://t.co/eON0r5x6.

L has the moves and fighting his natural male urge to run like a loon around the hall. He has been briefed in case of collision.

One Direction. Cue rainstorm of dayglo bangles. L has been limited to 4 and tastefully selected 4 dark red ones. Nice.

Now mildly obsessed with how they can connect to his belt. They will end up all over the dance floor which will be an interesting challenge

Bangle modes tried: daisy chain. Belt buckle. Handcuff. Bangle. Necklace. Leave with dad. #schooldisco

Can you call it camp dancing if they're only 8 years old? Enjoying a candy watch. That's not euphemistic. Oh god. #schooldisco

Party rock anthem. Rainbow drops 15p. L came back saying he only had 40p. Quickly amended his error. "I'm death" is his reply.

IT'S CONGA NIGHT FOR SURE! L second in line. Setting the pace. Centrifugal swinging problem averted.

DISASTER! They've internalised the conga, working into the middle surrounded! This could be the longest key change verse chorus in history

they made it, but the DJ wants blood. Next circle of hades, the hokey cokey. #schooldisco

Phew. It's the CBBC slow paced Justin version and L decides to sit it out, but oh no, what's this... #schooldisco

Musical statues. Keen blog readers will be aware of the problems with L's issues with competition and losing. I sit with fingers crossed.

Kind DJ. Games but no losers so far. Everyone too good. Dancing contest next. Winner gets the balloon hat. I predict no problems if L loses

Jesse j. Logistical problem. J has a green bracelet. L needs a green one too therefore. Sold out. No swappers. He's building up now.

At least it distracted him from the competition. Hope he gets distracted again now! Personally, I think the red look v cool. #schooldisco

LMFAO, and relieved and I know it. J has given L his green one. How does that work? #autism #schooldisco

L is physically hot now. Despite removing jumper outside, we are entering the danger zone. JLS oh oh oh oh oh oh. #schooldisco

‎5 mins to go. Fingers crossed for a damp squib ending and no fireworks! I can't believe how hard some of these kids are hitting the floor!

House lights up. Music off. Kids on the floor. It's a formal ending to the eventless evening. There's a first! Thanks #schooldisco #autism

A bit unusual for an entry, but hope you enjoyed it.

follow me on Twitter @bbtom10

A multitude of help, so why the struggle?

I'm sure I will get around more to describing the diagnosis process soon, but today I feel compelled to write about the sheer number of different people involved in helping us find L's diagnosis and to support us now that we have.

To be honest, we saw so many different people, often in the middle of the day whilst I took a few short moments off from work, that I didn't remember who was who, or more importantly where they were from and what they were doing there.

Just as a list, to demonstrate what I mean, we had meetings with the following people:

 - School (Teachers, Head Teacher, Special needs coordinator, not her real title!)
 - GPs (our Gp, and a local child specialist GP)
 - Children's Hospital (2 different consultant specialists, nurses - who constantly mis pronounced L's name - autism specialists, assessors)
 - Parent Partnership, often at the school but sometimes at home
 - Educational psychologist, also at school
 - Educational support - usually from the council, to support L in the early days by giving him special time and attention
 - The Autistic Spectrum Disorder panel - we never actually met them as a panel, but I'm sure some of them we have seen
 - Family Services - probably the most helpful, Kath has been very kind in guiding us through the process and maze of people, again based at the Children's Hospital.

So, all in all, probably at least 14 people - I'm pretty sure all were women too, come on men, don't you care? - in a little over a year, all doing different things with different agendas.  Some tried to help us, some tried to help L, some tried to diagnose him, others tried to manage him.

So a word to anyone starting this journey yourself, keep a little notebook just to keep track of who's who - having the right person to speak to when you have a quesiton, or don't have the letter you need, or need to rearrange an appointment, or just need to say hello to without forgetting their name - would be my tip of the day.

Other people's stuff: Autism Video

Some of you may have seen this before from my Facebook, but it is a beautiful thing and very well done.

Lose at all costs

Well, what a summer it's been, with London 2012 being a spectacular success in both paralympics and olympic events wowing the world, Andy Murray on the cusp of greatness, plenty of golf, cricket and even a presidential election (surely the biggest 'sport' in America) to get excited about and England's love affair with football on the wane as every other sport in the world seems to be better and more honourable and above all else teaching us that Britain can actually win something.  Anything!

It brings to mind something I read a long time ago about the British spirit of sportsmanship and fair play, and that it is the taking part that counts.  Now, even the government has pledged to introduce competitive sport at almost every level in schools, the mid-life crisis now apparently involves lycra and expensive bicycles rather than sports cars.  Everyone wants to win!

I am greatly encouraged by this because I enjoy sport very much and I want to see Britain on top of the world in sport, not only for my own entertainment, but also for my children.  Ahh, what a wonderful future awaits them.

There is one small problem however.

L is a creative kind of guy.  He loves nothing more than a new set of lego or some Fimo and to set his mind free to create something beautiful, thoughtful and spectacular.  As most 7-year old boys do though, he also loves computer games.  And this is where the problem lies.  A problem I am concerned about for the future.

You see, on his own, he is great, he loves playing on his DS, out iPhones, my iPad or the Wii, even the Nintendo 64 is enthusiastically received.  But throw in another competitor and the fun drains out like the water from a giant paddling pool after a big fat guy tries and fails to leap over the side.  Yes, he got £250 from 'You've been framed', but it would have taken a long time before he saw the funny side I am sure.  (And have you seen how expensive those giant pools are?!).  For L, this is often H, or myself.  As soon as things look like they are going awry, say 30 seconds into a race in Mario Kart and a giant chomp gets him, his frustration boils over rapidly.

This boy either has a will to win at all costs, or simply cannot accept any defeat.  Even the prospect of defeat triggers a tantrum within seconds.

So, I wonder what happens at school when playing football or tennis, or when he plays with his friends.  I have mentioned before about his desire to direct the action.  This will to win is more destructive.

So, I don't really know how to deal with it - whether to try and help him control his temper as he plays, heading off tantrums with positive comments, or whether to avoid it all together?  As the government's pledges come to reality, he will be encouraged to win.  He will be happy to win.  But what happens when he doesn't?

I don't know whether he will learn and get used to it - history over the past fw years suggests perhaps not - or whether he is destined to be labelled a sore loser by his schoolmates as he throws tantrums, racquets, footballs around the playground.

It's another thing to work on I think, but in the meantime there is one lesson to learn for anyone playing with L at anything.

Lose.  Lose at all costs!

Dealing with the stress of it all

It's funny how on the one hand, we try and do things in a relaxed calm manner, whilst on the other, when we aren't trying, we react quickly and unfairly.

I've always been a fairly laid back kind of fella.  I have no idea if others share my experience, but as I was growing up I would often think of what kind of parent I would someday become.  Everytime I was shouted at or grumpy with my parents, I made a mental note not to make my children feel the same way, and yet here I am.

I always thought I would set my own rules and never forget what it is like to be a child.  I would never say 'just because' when I didn't really have time to answer a question.  I would always be there and encourage and support my kids.  Most of all, I would never snap or shout at them just because I've had a bad day and they asked the wrong quesiton at the wrong time.

Well kids, you can make your rules, but there will always be times when things get the better of you.

I realise that my parents had these same rules, and that 99% of the time they followed them with the same kind of determination my dad showed when trying to light a barbeque.  Never give up and put the effort in and you will be rewarded accordingly.

As a child though, it was very difficult enduring the very few 1% occasions, and as I look back on it, I realise that this was nothing to do with me, but just bad timing as my parents struggled with one of the million things parents have to deal with.  Sometimes, there's more to life than making lego or buying the Beano.  Providing sustenance, a roof, trying to better yourself and your career.  Heaven forbid a parent looks after number one once in a while!

So here I am today, being the best Dad I can be, and yet still I have my 1% occasions.  I think my children were sent to challenge me and they certainly do.  They can ask wonderfully exquisite questions and make endless enquiries into life and beyond (or why when in in human form Ben Tennyson can still withstand massive physical alien attacks, yet his foes are easily vanquished at the flick of a wrist).  They can also push you to your limits.

I suppose my point here is that we should feel guilty when we shout at our children, but not too guilty.  Hmm, doesn't seem a very definitive conclusion to me.

Anyway, the point of this entry is that stress can come in all forms.  At the moment, H is into his 3rd stubborn week of refusing to eat fruit.  He never has eaten fruit (aside from a lick of apple once and a nibble of watermelon) and we have tried everything.  But 3 weeks ago we took a stand.  We refused him any sweets or treats, and bought him a big toy as incentive.  Even now, sat above the TV, lies a 2 foot long Star Wars blaster gun, full electronic sounds and flashing lights and chosen by H himself. 

Me:  "You can have than when you eat some fruit".
H:  "I will never eat fruit".
Me:  "Then you won't ever get your gun"
H:  "ok".

And off he trots.

This child has a diamond will, a titanium strength determination to do what he wants.

Now, I know as a good parent, he should eat fruit, and I don't want you to think we don't give him anything, he has veg hidden in sauces and dinners, he eats carrots, he will even have the occasional innocent smoothie (the purple one), but fruit is the barrier that will not be crossed.

This causes both my wife and I to stress.

This blog is about L though, and what is really quite upsetting is that L doesn't like there to be any disturbance of the force in our house.  So when wife and I are cajoling H again to eat some fruit L gets upset, and demands we stop.  We threaten, we promise, we reward, all for H's benefit.  We do explain to L as well why we are doing it but I can understand why when we are raising the roof in superhuman effort to get H to eat fruit, he finds it upsetting.

So with one person shouting at another and a third shouting to stop it all, sometimes I am in the 1%.

"Worst Dad ever" Follow-up

Following my earlier, rather dark post, I would like to add that all by himself, L retracted his statement this afternoon, confirming that he didn't really mean it and was actually very happy that I was in fact the "Best Dad in the World".  I'm sure I have a mug to prove it anyway so I wasn't really concerned, but it was very nice of him to realise he had upset me earlier and to retract the statement.

There followed another tantrum when I asked him to stop playing with my iPad, but this only resulted in 13 stars being added to my naughty chart, which he actually invented today for his younger brother, but which he made a special column for me to document my naughtiness to him.

Finally, this evening he came out of bed and walked downstairs to declare, very happily, that he had now blown his nose himself for the first time.  At 7 years old and with a history of hayfever in the family, this is actually quite an achievement.  One of his non-typical behaviours is his mild obsessive cleanliness, especially in that he doesn't like having dirty hands or a dirty face.  Any hayfever sufferer out there will know the tolerance required for heavy nasal excretions using a tissue and the need to be able to manage the fallout around one's face.  This is the most difficult matter for L to deal with, so this evening's achievement is all the more wonderful for that.

There.  I hope that was  a little lighter of a post.

HEADLINE: “Worst Dad Ever” Tragic suicide

“A young, handsome father of two boys has committed suicide following a cruel indictment from his son, labelling him the “Worst Dad ever” in a hand-written note.

It is understood that the young man received the note following a treasure hunt game with his two sons which turned dramatically sour following delivery of a “very bad map” to his eldest son, 7. Following his efforts to find a fun distraction following a shopping trip to Wickes and Aldi earlier in the day, Mr T decided to draw a map of the garden for each of his sons and hide 6 of their favourite toys, marking each one with a cross to identify their location. Unfortunately, his eldest son could not locate any of his toys and whilst his youngest son, 4, sought help from his loving father, the eldest instead threw what was described by neighbours down the street as ‘a massive tantrum’. The witnesses state that the tantrum lasted between 4 and 7 minutes with the boy shouting “that was the worst map ever”, “rubbish map” and “I hate you” and Mr T showed a great restraint in not raising his voice, however what followed was clearly distressing to all concerned.

The son disappeared for a few moments while the well groomed man started to mow the lawn before returning with a hand-written note. On it in his own handwriting he delivered the crushing verdict.

"was dad evre"
He knew that this translated to “Worst Dad ever”.

He continued in his task to mow the lawn for a few more minutes before suddenly breaking into a sprint with the lawnmower, heading directly over the power cable for it’s full length, making corrections as he ran to be sure he cut the cable and it’s blissful release of electricity surged through his body before collapsing to the ground, his now smoking corpse quivering as the final volts surged through him before a final bang came from the house as the fuse finally conceded defeat and ended the torment.

The family of the attractive man confirmed that his son is autistic and that his tantrums are not rare occurences, and the shock of the suicide is made even more acute by the fact that he was apparently dealing well with his son’s condition.

It is a tragic illustration that the pen is mightier than the sword, and that even when things all seem ok, beneath there lies a field of magma waiting to erupt.”

I would just like to point out that the story above contains many facts, but is mostly the documentation of my internal feelings.  Except for the suicide bit, I'm not that emotionally fragile. Sometimes it is hard to ignore hurtful things, even when they come from the mouths of babes.

Hyperactivity & Vociferous Procrastination

Evening all.

Firstly, my apologies for the length of time between this and my last post - a lot has been happening lately with a brief holiday, school holidays, work stuff.  It has been a busy period and I have neglected you, my faithful and wonderful (and often beautiful) readers.

I have been considering a number of entries and my list of articles to write for this blog still grows, so fear not and please bear with me.

Today, my focus is on L's massive amount of energy which often creates problems of its own, let alone when combined with his non-typical behaviour.  Oh yes, we have a new way of describing how autism manifests in L.  He is simply non-typical, not 'unusual', not 'abnormal' or 'non-normal', just not typical.  It seems a very pleasing way to describe what is a challenging condition which he faces and yet he is a normal 7 year old boy in so many ways.

Anyway, I digress, L finds it a struggle to stand still, let alone keep himself calm when things are happening in a way beyond his control.  Often I now use the strategy of commanding him to be still.  As soon as I then ask for him to look at me and make eye contact (often gesturing between my eyes and commenting 'I'm here, not here' then gesturing to the rest of the room) I can see the energy bubbling up from his feet, his body starts to undulate and then swing from side to side and within a few more seconds he is pacing, often dancing around the room in a small circle.  This boy is very difficult to focus on from my point of view, so how can he possibly focus on anyone talking to him?

I think that what I have to recognise is that he focusses reasonably well when required and willing, and his constant activity provides little distraction, but those times when he perhaps is less than willing to listen or to engage in conversation his movement is very offputting for the person trying to engage.  Now I think I am realising that, perhaps this is a disservice to L.  I think he has learned a lot in recent months and does now offer people a degree of interaction and attention even when he perhaps doesn't want to.  Think for a moment about yourself, when someone is talking to you about something you have no interest in or someone you have little time for, perhaps the girl in the office who makes crap coffee, or an elderly family member talking about how certain makes of car are completely infallible and anyone who thinks otherwise is an idiot, what do you do?  Personally, I ignore them, make very little eye contact and do not respond when asked ambiguously rhetorical questions.  Maybe L's dancing around the room to his internal balletic symphony is his, perhaps slightly less subtle way, of telling people they are boring?

Now you and I know that there are times when one must nod, respond, listen, make occasional eye contact and certainly maintain proximity to our conversational partner, but this is a social rule, not a personal idiosyncrasy. 

Likewise the other way around, when conversation is inappropriate.  If you were struggling to understand social rules, like the battle entering its second hour across the room as your mom desperately tries to convince your brother to eat his peas and asks you to give them some space, you don't expect to be suddenly engaged in a deep and meaningful conversation about which Daleks might be in the new series of Doctor Who.

What I suppose I am about to conclude, is that there are lines between the 'condition' and the 'behaviours' and the 'personality' of a person.  That one cannot be linked with the others and whilst when I ask (I think I said command earlier, which is perhaps closer to the truth) L to be still, perhaps this is not some unrealised 'symptom' and instead is just a wonderful boy who has little time to be told again to stand still and listen when there are wonders to behold.

That feels like a very scant conclusion, but this is my first entry back in the game, so forgive me.  Again.

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.