If I Could Turn Back Time…

A couple of things happened recently that have led to this post.  Firstly, I reached the “milestone” of 5 years since my autism diagnosis.  Secondly, I spoke about autism and neurodiversity on a leadership training course.  Both of these got me thinking a lot about my own experiences pre- and post-diagnosis and how autism has impacted on my life over many years.  What keeps coming up are two questions – the first is whether I am glad I got diagnosed and, leading on from that, the second is whether I wish I’d been diagnosed earlier in life than at 40 years old.

The first question is easier to answer, and my response would be a resounding yes.  I’ve never regretted seeking a diagnosis for a minute over the past five years. The simple reason is that I now know and understand myself better than I ever did before. Learning about autism has gone a long way towards explaining aspects of my character and emotions that I could never get to grips with. I can celebrate ways that I’m different, rather than seeing traits as a weakness or abnormality. Probably most important, because I know the way my mind works and the way I react to things, I can put in place coping strategies to handle stressful situations and communicate more effectively in my working and personal life. The sheer relief of discovering you are not mad cannot be underestimated either.  At the same time, I’ve had the opportunity to meet and share experiences with other autistic adults through joining support groups and interacting online.  That has been hugely important for me – when you spend most of your time surrounded by neurotypical people, being in an environment where you don’t have to explain your reaction to situations because the other people just understand is a precious thing.  So all in all, no regrets.

But that doesn’t necessarily mean I’d advise anyone to seek diagnosis.  It really all depends why you are considering it.  Certainly, don’t get a diagnosis to access support as there is next to nothing available for adults in the NHS, and what is out there is subject to a postcode lottery. And if you are fairly comfortable in your own skin and not having any trouble with self-esteem, depression and the like, then why rock the boat?  Just carry on as you are and you will be fine.  You don’t have to produce proof of diagnosis to read about autism-related challenges online or in books, so you can still address any issues you are having.  And of course, you can change your mind later.  But if you genuinely feel you need that confirmation and would benefit from putting a name to things that have impacted your life, by all means do as I did and go down the diagnosis route.  Be prepared for a battle, with your GP and/or with the bureaucracy surrounding adult referrals, but be persistent and you can get there.

So that brings us to the second question.  Because of how much more confident and comfortable I am now, there is a strong temptation to feel a kind of regret that I wasn’t diagnosed earlier in my life.  But I don’t think the issue is as cut and dried as all that.  Like anyone, my past experiences have made me who I am today.  My resilience and persistent attitude have been partly shaped by facing difficulties and the need to be able to take care of myself in tough times.  I arrived in the dual career that I now successfully pursue in part as a reaction to struggles I had getting on in a more conventional working environment.  I take a huge amount of pride in having achieved the things I have.  Because of or despite being autistic? A healthy dose of both I believe.  Nevertheless, if I’m being totally honest, I would be lying if I said I am perfectly happy with getting my diagnosis at forty.  Being able to gain the understanding I now have of myself when I was a bit younger would have made life’s path a bit smoother, saved me lots of heartache and meant I could ensure I put in place the right strategies, rather than being treated for all kinds of mental and physical health issues that were actually manifestations of being autistic.  That’s not to mention the amount of money I’d have saved on therapy of various kinds!  So a somewhat earlier diagnosis would have had its benefits.  But not so early that I never developed some of those positive aspects of who I am today.  And one hundred percent definitely not in my childhood or youth.

Things are very different today.  There is a much greater understanding of the autism spectrum, especially at the higher functioning end, and young people and their families can access excellent, targeted support at home and in their education, as well as assistance with things like independent living and accessing the workplace.  But when I was growing up in the 1970s and 80s?  Not a chance! I seem to think I’d heard of autism when I was young, but not as a spectrum, and certainly not as something that might relate to me, despite my many quirks.  If people were aware of autism at all, it was either the lower functioning part of the spectrum – the “classic” image of a (probably non-verbal) child sitting rocking in a corner, failing to engage with the world – or the “idiot savant” stereotype popularised by media representations like Rain Man.  Certainly, the idea that someone could be autistic, yet still able to live relatively normal, productive lives, have jobs, relationships and families, was far away at that time in history.  Even as awareness and scientific findings developed, if I’d ever been diagnosed in my teens, for example, I can’t help thinking the label would have been a very negative one.  I might well have never had the opportunities I had to gain an excellent education. Autistic kids were in remedial classes or special schools, not Russell Group universities.

So where does that leave me, all in all?  Certainly no regrets about diagnosis, but maybe a slight wondering whether some times in my life could have been easier had it happened a few years earlier.  But overall the good outweighs the bad.  In a world where teenagers with autism get denied a referral by a GP because they caught a ball (“if they were autistic, they wouldn’t even be aware of the ball”) and adults are turned away because they manage to have a relationship (“you can’t be autistic – you’re married”) – both of which are experiences of personal friends of mine in the past few years – I feel lucky that I had a GP who supported me in getting a diagnosis and was able to go down that route five years ago, and that I have been able to learn so much since then from websites, books and other amazing autistic people I have met.

Advertisements
Posted in Uncategorized | Leave a comment

Home

Home

Every Nottingham Panthers fan of a certain age will have stories about our old ice stadium, which closed in 2000 as we moved into the much bigger, much more modern National Ice Centre.  Indeed, the charity e-book I was recently involved with – “Voices In the Crowd” – contained a couple of contributions sharing memories of the place.  Needless to say, I am no exception, which I guess must mean I am now officially, by my own definition, “of a certain age”.  I remember that unique atmosphere, the great (and plenty of not so great) games and players that the stadium played host to, all the amazing nights of Panthers hockey.

I’m just one of 2800 who can tell those stories, but the building had plenty of personal memories too.  Essentially, it was the backdrop to my childhood, teenage and early adult years.  I started going to matches there when I was 7 and I was 27 when we left, so that’s some pretty formative years right there.  That’s why I’m not going to write about the first time we beat our early rivals Streatham, or the unbelievable atmosphere and heroic performance against Manchester in the 1998 cup semi-final, or the touring Canadian team Don Mills Comets.  I want to remember how it felt to be a kid and to grow up at the Nottingham Ice Stadium.

My overwhelming recollection about the old Ice Stadium is how comfortable I was there (and I’m not talking about the benches here) from within a few months of when we started going.  It’s no exaggeration to say that, other than the houses I’ve actually lived in, it is the place I have felt most at home in my entire life.  Just like a familiar home, I can recall the look, feel and (of course) smell of every inch of it.  I could walk in there tomorrow (if only) and find my way around as though I had never been away.  No matter whether the team was good or bad, and believe me sometimes they were very bad, whether we won or lost, or what was going on in life outside that building, I would always feel good in the stadium.

Our home within home was, for most of the time we spent there, Block 2 Row N, at the end of the row closest to Block 3.  Second to back row, and I’ve always loved watching hockey from a bit higher up – I sit three rows from the back at the NIC now in fact.  Within easy shouting distance of the penalty box, as we and those around us proved on many occasions.  And with a great view of the whole ice, apart from the odd occasion when weather conditions outside made it a bit foggy at the start of the match.  There we sat – my two uncles, my dad, my sister and me.  Apart from my dad, who has now passed away, the rest of us are still season ticket holders.

Sitting by the steps meant an easy escape at the end of each period, but of course where we went changed as time went on.  During the early years, it was the famous sweet shop and/or the merchandise stall. Then all the way round the concourse – although it was really more of a tunnel I suppose – to the corridor outside the dressing rooms, where a gang of kids hung around to see their heroes as they came back out for the next period.  If you were lucky, you got the early 80s equivalent of a high five or fist pump.  On one memorable occasion, Panthers’ hard man Gordie Patterson whipped my black and gold cap off my head and skated onto the ice with it perched atop his helmet.  After the match, it was down to the boards to get a handshake or pat on the head from players during the lap of honour.  It’s worth mentioning that I, my sister – three years younger than me – and (and as far as I know) the other kids too did all this wandering around the stadium without much parental supervision at all.  We sat with dad and our uncles, but other than when the game was in progress we were free range.  Times have certainly changed in that respect, too.  As childhood gave way to teenage years, the hooter meant a dash to the bar – we were lucky as the entrance was directly opposite the steps from our block – for a swift illicit beer.  In later years, round to the bar near the dressing rooms to catch up with friends and have a cigarette – if you were lucky, the odd player came out of the dressing room for a quick smoke too. But as the years went on and we got older, match night was always about the routine.  We went up the same bit of the stairs on the way in, showed our tickets to the same person at the top, went to the same 50/50 seller, got food and drink at the same times and from the same outlets – game after game, season after season.  It was home and just like at home you are totally in your comfort zone when you’re there.

My feelings when the new stadium was announced were mixed.  On the one hand, there was optimism that we would become a bigger team and finally be able to compete with that big-spending, high and mighty arena team from up the M1.  But of course there was also the sadness and nostalgia for the end of a great era that had shaped the spirit of our club and our attitudes as hockey fans.  The final match at the stadium is well documented and it was certainly an emotional occasion.  For some reason, rather than our usual bus trip we got a lift off my uncle, just as we had when we were kids, and we were all reminiscing about the times and faces that we’d known together in that building.  I was sitting in an unfamiliar area – I moved around a bit in the last couple of years – and for the first and only time found myself behind the goal.  I’d expected to be in bits at the end, but had not anticipated standing in floods of tears during the national anthem – a grown man and I didn’t even make it to the opening face-off dry eyed.  The game itself was a non-event.  But everyone recalls the aftermath.  You know the phrase “they’ll take anything that’s not nailed down”?  Well, in this case something being nailed down was no impediment, as Panthers fans got to work with an impressive array of tools to take their own souvenirs of the building.  We have our bench from Block 2 Row N – it lives behind my sister’s sofa and sometimes we’ve been known to watch a match together on TV at her house and put it on the sofa to sit on it.  And that was that, a crazy night that was somehow a fittingly eccentric end to a building of such character, which was one of the great venues in a more spontaneous, less professional era of British hockey.

Actually, the story doesn’t quite end there.  That summer, after the demolition work had started, we went to the Cricks (the Cricket Players, “our pub” adjacent to the stadium for the uninitiated) for a few drinks to celebrate a friend’s birthday.  While waiting for our lift home, my sister and I wandered over to look at the old stadium.  It had no ice pad of course, no roof and the outer walls were partially demolished.  But the basic shape was still largely intact.  We looked at each other, obviously both having exactly the same notion – and before we knew it we were clambering over the construction site fence.  The first thing we did was grab a brick that was lying around – it was from somewhere in the corridors, as one side has that horrible flecked paint that I’m sure we all remember.  Then we were at centre ice, just standing there in silence, soaking up the atmosphere one last time.  It was a personal farewell in a way it could never have been at the final game.  When the wrecking balls moved in, I felt like they were knocking down not just a building but my youth as well, and I am grateful I had the chance to say goodbye to both of them properly.

It’s strange to think now that we have been in the NIC for almost as long as I watched the team at the ice stadium.  Of course I enjoy going there, I feel comfortable, we have our match-night rituals and it is a great place to watch hockey.  But it will never compare.  No matter how many league championships we win there, no matter how good the players are and no matter how many memories we get to share in the place.  It’s our home arena but, for me at least, it will never truly be home.

Posted in Personal, Sport | Tagged , , , , , , | 2 Comments

Hockey and Aspergers

For those who are new to my blog and don’t know anything about me, a bit of background. I was diagnosed with Asperger Syndrome – an Autism spectrum disorder – just over two years ago at the age of 41. Since then I’ve had to try and make sense of life in a whole new way; the diagnosis has made some things easier and some things harder. This post is about how being on the Autism spectrum has affected my life-long passion for ice hockey and, looking back now, the role that hockey has played in my life as a person with Aspergers.

If you were to tell someone that a person was on the Autism spectrum, one of the things they’d probably expect is that the person would have what are known in Autism circles as special interests, but most people would call obsessions with particular subjects. Although, like every aspect of Autism, it’s impossible to make general statements as each person demonstrates the various diagnostic criteria to a greater or lesser extent, I guess I’m pretty typical in this respect. There are certain subjects and interests that I am passionately keen on and if I like something like a singer, a series of books, a film or whatever then I am likely to know everything about it. One of these interests of mine is sport, particularly ice hockey, which I have been watching since I was 7 years old. My team is the Nottingham Panthers, and I’ve been a passionate supporter pretty much all my life and am still a season ticket holder today.

As far as I know, sport is not a really common Autistic special interest. I’m not sure why – I’ve read articles saying it’s because it has no “point” to it, being a fan of a team even if they are rubbish doesn’t appeal to Autistic people’s tendency to be logical and also because it is unpredictable (which for sports fans is one of the attractions). The last point is interesting. Another typical Autistic trait that is very strong in me is a liking for routines – one of the things most likely to cause me very high stress levels or even “meltdowns” is uncertainty, unpredictability or changes to routines or plans. So where does that fit with my love of hockey? Well, of course the outcome of a sporting fixture is unpredictable (my team’s wildly inconsistent performances for most of this season being a prime example), but there are many aspects of watching hockey that are routine. Matches have a given structure in terms of the playing time, the game has rules (which are sometimes even observed by players and officials) and there is not much that can happen in a match that I’ve not seen many times before. What’s more, I have my own seat in our stadium and matches start at standardised times (7pm on Saturday, 4pm on Sunday, 7.30pm midweek). Like many non-Autistic but superstitious fans I also have my match night rituals – always going in through the same door, getting foods or drinks from the same outlet at the same point in proceedings and so on. So there are still enough aspects that are sufficiently routine and predictable for me not to be outside my comfort zone.

Another aspect of sport that very much falls into “special interest” territory is the trivia and statistics that go with it. This is another area I love. As hockey is very much a North American style sport, stats are a big part of it and this element has always fascinated me. Not so much now maybe, when I have other things (scary, real life things) to occupy parts of my brain, but when I was a kid I was very much into the stats. I suspect that, then and now, most young hockey fans would cut up programmes and hockey magazines and stick pictures of favourite teams and players on their walls. My bedroom walls were covered in stats pages from Panthers programmes and Ice Hockey News Review issues and I can probably still reel off various stats from mid-80s British hockey – don’t worry I’m not going to. The same applies to trivia – who played for which team, when, how they did, the stories and scandals from around the leagues, results and scorers from big matches 20 or 30 years ago – I love the minutiae of the game. I appreciate that there are thousands of hockey fans who share this fascination and are not on the spectrum. I’m not suggesting they may be, just trying to explain why I think the sport provided a perfect outlet for the way my brain functions and especially the encyclopaedic memory that is one of the very positive aspects of my Aspergers.

So much for hockey being very much a special interest. What other impacts has it had on me as a fan with Aspergers? Firstly, it is one of very few activities that I can get totally engrossed in. One of the difficulties of living with Autism is that your brain is constantly buzzing, trying to process and interpret sensory input that most people’s brains just deal with automatically without them even noticing. Watching the Panthers play hockey is different – I am absorbed in the game and my brain is not off trying to process other information or turned inwards on analysing my every thought, word and action, as it is for pretty much the rest of my waking hours. Unless you are on the spectrum you will not be able to appreciate how important that is; you’ll have to trust me. To anyone living with someone with Autism, whether it’s a child, a partner, a friend, I say give them time to pursue their special interests because the benefit to our wellbeing and stress levels of tuning out of the sensory bombardment and into the interest for a couple of hours is one of our very best coping mechanisms. While we’re on the subject of sensory input, I have to say that I don’t have a problem with loud noise, which is why I love hockey matches and live music. I know lots of people with Autism do, so maybe I’m not so typical in that sense.

So I’m engrossed in my team’s match but what I also am at a hockey game is part of a community. This is the same for all sports fans and something they all value hugely. I wouldn’t say it’s more important for someone with Autism, just important in a different way. The thing is, even if you don’t have a diagnosis until your 40s like me, you always know that you are different from other people and you always feel like an outsider in a world that often makes very little sense. But not at a hockey game. Yesterday, when I was at Sheffield Arena cheering my team to a dramatic overtime win in the cup final, I wasn’t different – I was the same as all the other hundreds of people wearing Panthers shirts. As with the previous benefit I talked about, I cannot over-emphasise how incredible it feels for a person with Autism to feel, for once, that they are just like other people, part of something, and accepted because they wear the same shirt and support the same team. Not different, not weird, not on the outside looking in.

Social anxiety is another issue that often goes hand in hand with Autism. Typically for someone with Aspergers, although I have learned to hide it to some extent, I find social situations extremely daunting and will often feel sick and be in tears before I leave to go into such a situation, even somewhere I really want to go with people I know and like. Small talk is something I find completely impenetrable, and conversation generally is a minefield due to difficulties in picking up non-verbal messages. What hockey does for me is grease the wheels a little bit – before a match, during a match, after a match, online or face to face with other fans, the sport, teams and matches provide ready-made conversation material that you know plenty about and are interested in. Again, it’s something anyone with Aspergers would be grateful for to hides the difference you spend most of your time feeling and overcome the challenge you normally face in that kind of situation.

So I can talk to hockey fans of any team or even from any country about the game more easily than I can to most people, especially strangers. But what is even more important is that through supporting the Nottingham Panthers I have made some of my closest friendships. I just spent a great weekend away with friends I met through the hockey. We watch matches together, we have travelled to Germany to watch matches together, we talk about the game, we reminisce about the game, and we’ve even raised thousands of pounds through our hockey-based charity event The Rink Rush. I guess most hockey fans met friends or even life partners through the sport but as someone who has always found it very hard to establish close friendships, I know that shared interest and passion has helped me meet people who have enriched my life, when I might otherwise have struggled to build those bonds.

Finally, we come to something that may be a bit controversial but I truly believe is a benefit I have gained from being a hockey fan over the years, and that is what it has taught me about emotions. People with Aspergers or other forms of Autism are often accused of lacking emotional response, being unfeeling, and especially having no empathy. Like most, I find this completely untrue and rather offensive. We feel a full range of emotions, although we may process them and express them differently. As for empathy, it is hard but certainly nowhere near impossible. Personally, I actually tend to empathise to quite an exaggerated degree but I usually need to have seen or ideally experienced the relevant emotion first hand to do so. Where do we learn about emotions and how to deal with them? Many people (myself included) look to books, films and songs for examples to follow. But I’ve always been able to look somewhere else too – to hockey. Sport is all about passion and emotion, and being a fan of a team for 35 years means I have seen and felt them all – from the gut-wrenching disappointment of a big defeat, to the frustration of a terrible referee, to the anger at being cheated by underhand opposition tactics, to the satisfaction of victory, to the pride of a backs to the wall performance by your team, to the overwhelming release of a moment like our first league title in over half a century. Of course, I appreciate that these are only a shadow of the huge emotional impacts we experience in “real life” because of grief or personal achievements or our relationships, but seeing them and feeling them as a hockey fan has given me an understanding and empathy that I know I might otherwise have struggled to achieve. What I still struggle with is levels of emotion, in hockey as in life more generally. Our current coach, Corey Neilson, is often praised for his level-headed approach – never getting too high in the good times or too low in the bad times. Unfortunately that’s not me. Like Spinal Tap’s amps, my emotional gauge goes up to 11 but I don’t really have 1 to 10; it’s all or nothing, black or white. Which is why some of my hockey-related social media contributions, blog posts and even in-game outbursts can tend towards the extremes. So if you’ve ever had the dubious pleasure of reading or hearing one of my rants, I do apologise.

So what does all this mean? Looking back over my life, knowing what I know now after my diagnosis, it makes perfect sense why I got so into hockey, why it has held my attention for so many years and why it has been so important to me. Perhaps other hockey fans with Autism have different experiences and have taken other positive things from the sport, or maybe parents who take kids with Autism to watch matches are just at the start of a journey. What I do know is this. Yesterday at the cup final I stood in a crowd of people that I felt one hundred percent part of, I spent the best part of three hours with my brain focused on a hockey match not the million and one other stimuli it is usually battling with, and I shared an emotional experience with members of my family and some of my closest friends. And for someone with Aspergers, those are precious things.

Posted in Aspergers, Personal, Sport | Tagged , , , , , , | 4 Comments

A Level Playing Field

I quite enjoy social media.  I probably spend longer on it than I should but many of us are guilty of that.  But what is it I like?  Well, obviously all the things that everyone likes about it – easy and quick way of communicating, keep up with friends, acquaintances and business contacts, be nosey about what people are up to, interact with people whose ideas you like, find out about issues and stuff that is of interest…….

But as an individual on the autism spectrum, there’s another thing too.  Whenever you hear media reports about online bullying, trolling etc. people talk about how online communication can be hard as you can’t see the person’s face or body language, and you can’t hear their tone of voice, all of which means it’s easier for misinterpretations and misunderstandings to happen.  While that may be a problem for many people, if you’re on the autism spectrum it’s a plus point.

Most people with autism have huge difficulty in interpreting expression, body language and tone of voice.  It’s one of the major reasons why communication is perhaps the biggest issue we face.  Whenever we speak to people face to face or on the phone, we find ourselves at a huge disadvantage.  Believe me, it is exhausting trying to quickly process all the information and confusing signals coming your way, and to try to learn and mimic the way other people interact.  But on the internet, everyone is in the same boat. All of you people out there without autism get a chance to discover for yourselves what we have to experience every single time we need to communicate with someone.  It’s the only place or time when people with autism are faced with a level playing field in terms of communication.  That’s why it appeals to me.  Yes, I misunderstand or misinterpret things that people write online, but the great thing is that in this case so does everybody else.  I’m not the weird or different one.  And you don’t know how good that feels once in a while.

Posted in Aspergers, Personal | Tagged , , , , | Leave a comment

Christmas Greetings To All Our Friends

As we have for the last few years, Sally-Jayne and I have decided to make a charity donation rather than sending Christmas cards to all our friends. This year, we have chosen to donate to the National Deaf Children’s Society (NDCS).

Sally-Jayne has spent a lot of time over the past couple of years working in a school for deaf children, and through that we have seen first-hand how important the kind of support the NDCS can provide is for children and their families.

We’d like to wish all of you – and your families – a very Merry Christmas and Happy New Year.

 

Posted in Uncategorized | 1 Comment

World Autism Awareness Day

Today is World Autism Awareness Day and it’s fantastic to see so much attention being given to Autism in the media and online.  As my own very small contribution, it is the perfect opportunity to write my next blog post about my journey as I get used to my Asperger Syndrome diagnosis.

I’m a couple of months into my support with Autism West Midlands and it has been very useful so far.  We’ve looked at various areas where I need help to deal more effectively with life, and we’ve put in place some useful strategies, particularly for prioritising, organising my time better and handling stress.  We’re currently looking at Cognitive Behavioural Therapy techniques to help me cope with negative thoughts and be less self-critical.  I’ve also been directed to a 3-day residential course in building self-confidence, which I will hopefully be doing in early June.  As well as the practical exercises, it has been a huge thing for me to simply be able to talk to someone who understands and can help me put my responses and thoughts into some kind of context.

The biggest issue I face, like most people I would suppose, is acceptance of the diagnosis.  Not in the sense of being in denial that I have the condition, but in getting my head around what it means.  In one of my earlier posts, I talked about a “battle” and this attitude is exactly what I mean by acceptance.  It is hard to overcome the mindset that autism is something “external” that you have to fight with – in the same way that people with other kinds of medical conditions do, maybe people with cancer or serious physical injuries.  For them, externalising the illness or problem is fine, perhaps even beneficial, as this helps them to muster up the strength and determination to recover.  Initially, I took a similar stance to my diagnosis. I was constantly trying to separate “me” from “my autism”, to draw dividing lines between one and the other (I do this because I’m me, I do that because of my autism) as a way to develop coping strategies.  But I have quickly realised that it simply doesn’t work.  It is not external, it is a deeply-rooted part of me and influences how I think, how I react, what I say and do.  And the same traits can have both hugely positive and negative effects in different areas of life and at different times.

My support worker described it as being like a rope – there are different strands that make up who I am, and autism is one of them, but they all make up one rope.  I understood what he was saying, but this analogy didn’t work for me, because I know you can see the different strands in a rope and I was still trying to pick them apart.  My wife put it another way – I’m green.  Not in the sense of being inexperienced or environmentally friendly, she meant in a metaphorical way.  Imagine making green paint by mixing blue and yellow.  You know the green paint has blue and yellow in it, but you can’t possibly identify which bit of it is the blue and which is the yellow.  I know autism is part of me, but it is absolutely impossible to isolate it.  That makes perfect sense. It’s not easy, but every time I find myself trying to make the distinction, I keep telling myself “I’m green!”.  Anyone with autism will sympathise that I wanted to be blue really, as it’s my favourite colour, but that doesn’t fit the analogy, so I’m getting used to being green.  I’m starting to feel less agitated about battling Asperger Syndrome, and to focus on understanding what makes me unique and how I can make the most of the qualities I have.

Enjoy today’s celebration of Autism, and I hope awareness continues to grow.

 

Posted in Aspergers | Leave a comment

The Big Question…

A couple of days ago, someone I know was recounting an amusing story about a practical joke they once played on a new guy at work.  At break time, they sat around a table in the canteen and arranged condiments, mats etc. in a random pattern on the table, then when he joined them, they started moving them in turn, in the style of a chess-like game, making up names for them as they went.  Apparently, he was so keen to be part of the gang at his new workplace that within a few minutes, he was telling them the “rules” of this game that didn’t exist, using the words they had been making up on the spot.  It’s a great anecdote, but later that night it was on my mind and I couldn’t quite work out why.

Then it hit me.  THAT’S WHAT MY LIFE IS LIKE. In fact that’s probably what life is like for anyone who has an autism spectrum condition and is faced with the daily challenge of seeing and experiencing the world differently to most people.  It’s a frequently asked question in any information you read about autism – what is it like to have an autism spectrum disorder?  It’s something people who are in that situation often get asked.  And, of course, it is impossible to give an answer to.  The people concerned do not know anything else, and their condition can make it hard for them to empathise with how other people see the world.  Meanwhile, the others (we call them neurotypicals or NTs) can only ever get a limited understanding from descriptions provided.  But for me, here it was, out of the blue.

Of course, there are many aspects to conditions on the autism spectrum, and each individual experiences life in different ways.  But if you want to get the basic idea, a simple answer to the question “What is it like to have Asperger Syndrome?”, then here it is.  It is like sitting around a table where everyone is playing a game you don’t know the rules to, using words you don’t understand and you just want to join in.

Posted in Aspergers | 1 Comment