Sunday, May 31, 2009

An Introduction - Part Two (Teenage Years)

Following on from Part One, I'm giving a potted outline of my life with particular relvance to aspergers. Sadly, since I can't directly refer to aspergers in them, I'm leaving out many of my more exciting and creative adventures; such as the time I built a bomb (aged 11) and nearly wiped out myself and my neighbour, being hit by a motorbike and some interesting adventures with Sharks...

I didn't drop those hints simply to whet your appetite. I wanted to point out that a child's life can be quite dangerous and an aspie's even more so. Often we take more reckless risks, are alone (and unsupervised). We also tend to be be resourceful enough to get ourselves into a lot of trouble.

My life changed aged about twelve when I changed schools and my parents moved house. I started secondary school with a bunch of boys from my previous school but by the end of the year, I'd lost all my friends - and my faith in humanity. The reasons for this are already documented here.

The Classroom
I've already talked at length about my friendships in secondary school, so instead, I'll cover my classroom behaviour.

My classroom behviour was weird and it got stranger as we left the single-teacher world and moved to periods, where we had several teachers every day. Rather than choosing a personality at the start of the year as I'd previously done, I used to choose a different personality for each teacher.

For example, I had something of a crush on my art teacher and I was sweet and innocent for her. Funnily enough, she disappeared for about six months to have a baby and in the interim and we got a "goth" teacher. I changed my personality to better fit into the vibe in her classes and produced some amazing but very dark artwork. I still remember our old teacher dropping in on us unexpectedly one day and not believing that some of my artworks were actually mine. In the end, I shook my head to suggest that they weren't. It was easier than trying to explain about the personalities.

Aspies quite frequently turn into very good actors because they spend so much time trying to mimic neurotypcial behaviours that they lose sight of what parts of their personality are real and what parts are an act. This certainly happened to me and today I find it difficult to find my real personality in amongst all the movie quotations and acts intended to please those around me.

One particularly funny incident happened in an Australian history lesson - my first with a new teacher. The teacher asked a question about what Aborigines ate, and I shouted out "Kangaroos!". He wasn't pleased with my shouting out of turn, particularly when he'd just given the class a lecture about not doing it. He pointed at me saying "detention!".

I began to argue and he said sarcastically, "Well, it's either a detention - or you have to go outside and hop across the oval, right to the very middle and get hit by an aboriginal's boomerang".

It's only now (20+ years later) that I realise that it wasn't funny because of my actions - it was funny because I took him seriously and actually did it. I thought he was giving me a choice because being a typical aspie, I took him seriously. I did the deed to howls of laughter from the classroom - and hopped right into the centre of the playing field to act out the drama. There were three P.E. teachers standing in the middle and I "died" about 2 metres away from them. They were completely stunned. Needless to say, the History teacher and I became very good friends and I still carry a lot of his influence throughout my life.

Towards my later years of school, I became more and more arguementive and difficult to intimidate. I was always good at my work and I always tried hard but I felt that school needed to be a place for fun just as much as work. Teachers always reacted in either of two ways, they'd either become friends and we'd support eachother or they'd try to intimidate me and I'd end up being a major issue for them.

Then there were girls. At some point in my secondary school life, I decided that it was "girl-time". I decided on the arbitary age of 16 for a massive personality change and ditched all my classical music, clothes and attitudes for new and I thought, more trendy, ones. They don't look quite so trendy now when I look at the pictures today. More like "dag".

It was a literally overnight change and I became a new "fake" person. It lasted for about five years and was a lot of effort.

At first, I did a lot more harm than good. My girl chasing activities were more like "staking" because I'd hang around and hope that they had something to say - because I sure didn't know how to initiate a conversation. I wasn't "frightened of girls" or afraid to talk to them. I just didn't have anything I wanted to say to them. Being an aspie, I had no concept of smalltalk.

I'm sure I frightened a lot of people off that way. Of course, when I finally did seem "attached" it would draw more females to me because my attitude would change and I'd give off less "hunter? vibes". That was always irritating because the only time I'd be attractive to the opposite sex was when I was unavailable. I was strict enough with myself that I'd never consider dating another girl at the same time.

Eventually, embarrased by my lack of available funds, I left my high school sweetheart. I never communicated my problems to her and in retrospect this was a mistake. She thought that I was "dumping" her because I didn't like her.

It wasn't the end for us anyway because we're now married - but I'll leave that for part 3.

Saturday, May 23, 2009

An Introduction - Part One

I joined a newAspergers forum recently and decided to write an introduction - It's rare that I bother introducing myself in forums. Usually, I just jump right in and start asking/answering questions. Since I've not really done a proper introduction here, I figured it's probably a good topic for the next few posts.

I grew up in Australia in the seventies when Aspergers wasn't really a well known condition. Fortunately, I also had a hearing problem, I lost most of my hearing in both ears as part of an out of control ear infection aged about two. I say "fortunately" here because it was my hearing loss which enabled me to cope almost invisibly with the, then mostly unknown, symptoms of Aspergers.

If any photo screams out "Ear Infection", then I suppose it would be this one. Here, I'm on a tricycle with my older sister in our backyard.

Strangely, my next door neighbour was the same age and also deaf, though his deafness was considerably worse than mine. It wasn't until years later that I realised that the clue to my aspergers had been there all the time. My neighbour could hardly speak but his social skills were far better than mine. He had lots of friends and throughout primary school, I usually only had one at a time - and often none.

My deafness was picked up by an astute teacher in preschool. She, and the hearing center to which I was referred pushed me very hard in the direction of lip reading. I was told to look at people's lips when they talk - I still do. Without knowing it, they had gotten me around one of the first aspergers hurdles - the inability to look people in the eyes. Since I was looking at lips, people thought I was giving good eye contact and I didn't feel so uncomfortable myself.

I had an older sister and I always felt inferior to her. We were never especially close as children and she'd always run off to play with the girls further down the street. Sometimes I used to follow her but I never managed to fit in with the Barbie crowd and would soon be told to go home. In retrospect, these incidents were probably my aspergers social issues beginning to show. In the end, it was always the dog who was my very best friend.

At school, I was given quite a bit of help and any social issues I might have were always written off as "deafness-related". It wasn't until my later years that my mother started to think that there was something else wrong but she never pursued a diagnosis.

I had a lot of issues with meltdowns which generally couldn't be written off as hearing problems but somehow the doctors and psychologists would always either write them off as internal hearing issues or - believe it or not "bad parenting". I remember being taken to a psychologist who would ask me how I felt and would try to talk about "temper" issues and would ask me to do things like kick a rolled up paper ball around the room. This approach did not work well. For a start, you can't ask a young child, particularly not one with Aspergers to talk about how they feel and what provokes them when they lose their temper. Meltdowns and temper issues might look the same on the outside but internally, they're very different.

The problem with the psychologists was always that in the end, they'd shrug their shoulders and then point to my poor mother as the guilty party. Even worse, they'd do this in front of me and I'd find it quite amusing. That kind of behaviour today would have them out of the society but then, it was acceptable. I'm sorry to say that I gave my mother a "life of hell" because she bore the brunt of my issues as well as the blame.

My parents weren't bad parents and my mother in particular tried very hard to bring up a difficult child with a myriad of mostly undocumented problems. She didn't get a lot of help and since many of my issues were aspergers related, they were never identified. My father was also not a "bad" parent but he was rarely ever home. In my early days, he was a workaholic who would go to the pub for hours after work and then go to a technical college. On weekends, he would either be working building boats or racing them. Children weren't a big part of his life at that stage.

I had a lot more issues as a child and they included; bad asthma, for which my mother took me swimming every week and for which my teachers were lenient in sports. As a result my general sports clumsiness was considered "normal". I had bad allergies which kept me indoors (and away from social contact) more than some of my peers and I had dreadful clumsiness, for which I was taken to occupational therapy classes. In retrospect, I can now recognise the clumsiness as the "low muscle tone" problems associated with aspergers.

I had particular obsessions with objects and in particular, with Star Wars and the TV Show "Doctor Who" (both of which are still obsessions). I remember having issues with order and patterns and having all of my golden books lined up carefully and in a certain order. Even today, all of my books are in genre and ordered groups - and all of them have been covered in contact or hard plastic.

I guess that in my childhood, I was lucky because it seemed that everything I did, though it was misdiagnosed, led towards the right solutions for dealing with aspergers.

Tuesday, May 19, 2009

The Other Side of Empathy

Disclaimer: Since, after re-reading it, I felt that the stance I've taken in this post was a bit strong, I just want to make the point that I'm not blaming either party in a relationship but am simply presenting a one-sided arguement to counter the many already strong and equally one-sided opposing arguements out there.

It's a pretty common thing, particularly on discussion boards of ex-wives of aspies, to see lack of empathy cited as a major issue. In fact, many such posts treat this lack of empathy as the primary cause of marital failure, totally ignoring other factors which lead to break-up.

In this post, I'm going to ignore the traditional views in order to try to look at things from the other side.

The Scenario
It's been a difficult year for us so far. We thought that things were difficult last year when my son's middle-aged tutor unexpectedly drowned in her own pool in a "freak accident" on new year's day. Well, this year, it got worse.

The year started off with the death of my wife's cousin in a horrific motor-scooter accident. He was in his twenties and left a baby behind. Since he was in New Zealand and we're in Australia, we couldn't make the funeral.

Then about a week and a half ago, after a sudden series of strokes, my godfather passed away. He was only a few hours short of his 90th birthday. The last of his generation and probably my favourite indirect relative. He died in Queensland which is a long distance from Sydney and due to our recent "new house" expenditure and then difficulty in getting the kids minded, we couldn't afford to attend the funeral.

About three days after his death, my wife received a phone call from a stranger. He informed her that one of our best friends had suddenly died from an aneurism. She was 43. My wife pulled me out of a meeting at work to tell us that the girl we often referred to as "our other sister" had died. I had no reassuring words for her. All I could do was reiterate that it was a sad thing in my saddest tones. In this case, the funeral was in an even more remote location and there was never any chance we could attend. Luckily, there's a remembrance scheduled for later this week.

I thought that I was doing passably well tiptoeing around my wife and casting sympathtic glances until a few days later when my wife angrily retorted; "well, you haven't exactly been full of empathy".

Being on the "sending" end
Most people in any kind of relationship with an aspie know what it's like to be on the receiving end of "limited empathy" but what is the sending end like?

I'm sure that minimal demonstration of empathy sometimes makes our partners think that we're cold and heartless. Sometimes I wonder if we are.

What really irks me though is the fact that I haven't yet shed a tear for any of these people - even though I felt really close to them. I haven't felt that wave of uncontrollable sadness that sometimes and unexpectedly rushes over you
when it all catches up.

We aren't cold emotionless robots by choice and, truth be told, most aspies are nowhere near the levels described in the literature. Grief, like other emotions, isn't just a natural part of life, it's also a major contributor to the healing process. As I write this, I feel like I'm full of poison which can't be released until I can grieve properly. It's not that I'm unable to feel emotion - I can, and it's often stronger than a typical NT reaction. Unfortunately, I can't choose the time of its arrival.

I'm sure that I could "make myself feel sadness" if I sat and deliberately pondered on sad things until it caught up to me but that would be "cheating". Crocodile tears (fake tears) somehow just don't make the grade. My "inner-aspie" has enough issues with the idea of lying to others without me trying to lie to myself. No, it has to be real emotion and it will come in its own good time but meanwhile, I'm victimised because my body language isn't displaying the right signs and I'm not in a place where I can be the empathetic and supporting husband that my wife needs.

Needing to See
One of my biggest problems is that I need to see/experience an event before I can feel empathy properly. Second and third hand accounts do nothing for me. Even now, though mentally I know that I've lost these people, I still expect a phone call or surprise visit. Not attending a funeral makes it impossible to internalize.

I should probably clarify at this point that I'm awful at funerals. They are times of intense emotion for me because for me, they bring home for the first time, painful truths that everyone else has had several days to get used to, I'm frequently reduced to a blubbing mess. It's on these occasions that I find the NT empathy equation considerably lacking. My wife seems to understand but I've had my mother suggest that I'm "over-reacting" at funerals because I didn't seem so upset when the tragedy first occurred. It's like she thinks that I'm crying for attention. I wonder, if my mother, who knows me better than most people, can think this, what does everyone else think?

I know that now I'm in danger of confusing emotion with empathy, so I'll try to clarify. Crying at a funeral doesn't necessarily mean that you are feeling empathetic towards others. Often, we're simply crying over our own personal loss - a person who was special to us.

What such crying does do however is;

1. Paint us (aspies) as human beings, not monsters.

2. Enable us to understand how others may feel.

Internal Feelings
Sometimes, not being able to find the desired emotional response in myself "makes my blood boil". The worst times here are when I feel myself getting teary over the wrong things. This hearkens back to the point about needing to experience/see an event.

It's an awful feeling when even though you can't grieve for the loss of a person who was like a sister to you, you find yourself feeling sad because Artoo Detoo is going on a mission away from Threepio in the Clone Wars TV series. Worse still is when you can't justify it by saying that you're in a teary mood because you know in your heart that the moment would have made you twinge with sadness anyway. It's simply the way I experience things.

I guess that the main point I wanted to make here was that next time an NT starts complaining about the aspie lack of empathy being the cause of their relationship break up, spare a thought for the aspie in the relationship who can't lie about feelings they know are there but which don't appear until conditions are right.

Their inner conflict causes them just as much pain as the outer pain that NTs display only since they lack the facilities to convey the message, they can only watch in stunned silence as they are treated like unemotional serial killers and their relationship collapses around them.

Sometimes too, it's the aspie experiencing all the emotion and the NTs who are lacking in empathy.

Saturday, May 16, 2009

Conversational Effort: An Incident

This post is quite a long and rambling one... my apologies.

I haven't been the most supportive husband of late due mainly to two separate incidents, both of which are worth blogging about.

I'll cover one incident in this post and hopefully by the time I do my next post, I'll have my head around the second.

Talk is Difficult
If you read most articles which cover aspie diagnostic criteria, you'll find mention of the difficulties of smalltalk. You could be forgiven for thinking that this means that aspies are hopeless at discussing off-topic things like the weather (except for the surprisingly large number for whom this is a special interest).

You might also assume that aspies would be fine when talking on the job or about their special interests. That a computer aspie like myself could talk to lots of people for hours about computers - so long as nobody mentions "the weather". Similarly, you could assume that discussions with your partner on topics such as your children, what you did today or family financial matters are simple.

Nothing could be further from the truth. Every conversation drains us. True, some are worse than others but all contribute to "drainage".

Setting the Scene
So here was my problem. Most people who know me would probably describe me as "perfectionist" and a "workaholic". I have very little capacity to say "no" to anyone and when additional work is dumped on me, I don't complain.

Furthermore, I set very high standards and I demand (of myself) a consistent and high quality of work. When someone working for me turns something in which is below par, I'll often ask them to make some changes and still feel underwhelmed. I've long since given up expecting other people to meet my standards and often I find myself modifying or doing a "ground-up" rewrite of submitted work. I remember doing group work at university and being so displeased with my colleagues work that I included their 20 page submissions as an appendix in my 300 page work. We all got an "A+" but I don't think they were too pleased with the way their work was treated. I couldn't help it.

I guess this is the reason why in the last twelve months, I've gone from being a technical consultant on a couple of big projects worth half a million to wearing a variety of hats including "business analyst", "project manager", "coder", "data analyst" and "tester". I've always been used to long hours and my working week has been in excess of 50 hours for the past 15 years - of late it's been even longer.

At work, I'd have my hands full with this project alone but since I'm an IT manager, systems administrator, developer, troubleshooter and strategist for a complex system used by 3800 people at 950 institutions, it constitutes only a small part of my daily work.

All this was one of the reasons why I'd just spent two days hopping from one meeting to another while simultaneously dealing with a constant stream of people wandering in and out of my office. I was "talked out"

I got on the bus for my 90 minute (45 when the traffic is good) journey home and I was too tired to do my usual trick of listening to audio books on the blackberry while playing games on it (that's right, my idea of "relaxation" is pretty intense. This time, I tried to relax normally but my bus driver kept alternately stomping on the accelerator and brake and I had to hold on tight just to stay on my seat. Needless to say, I was very tired by the time I got home.

Welcome Home
Now my wife is a stay-at-home mum with her own share of problems. If it isn't enough trouble getting two aspie boys ready for school (sometimes against their will), helping them with their homework when they get home and preventing the from attacking eachother across the dinner table, we've had a lot of other things going on in our lives.

For a start, a close friend of ours had recently died unexpectedly at 43, within a couple of days of my godfather's death and I'd not exactly been full of empathy (this will be the subject of my next post).

In addition, we've been installing a pool and the workers had been at her all day with questions and misunderstandings. She's been busy running around trying to get comparable quotations for various types of fencing, concrete surrounds and electrical and plumbing installations.

I staggered into the house, said hello, got changed and sat down, my energy reserves depleted. At this point, what I needed most was "alone-time" to recouperate but being married with children, I've mostly had to accept that
none is forthcoming.

I turned the TV on so that I'd have something "blaring" to occupy myself with. I don't actually watch much TV because the perfectionist in me can't handle not watching anything (a) from the start, and (b) not interrupted by commercials. I only watched Star Trek - The Next Generation for the first time last year - because I systematically hired the DVDs one per week and watched them in exact order. I'm still frustrated that the shop had one missing DVD.

It's rare that I find anything on TV worth watching but I can usually handle silly things like Jerry Springer, Judge Judy and Funniest Home Videos because their "stories" don't last more than 15 minutes and mostly don't take much intelligence to follow. Jerry was on, so I started watching it.

My wife came into the room and watched for about five minutes then got bored and started talking to me about her day. I usually try to give my wife quality time when she seeks it because obviously if she needs to talk to me, it must be important. The show was running an advert but probably only had five minutes left.

When the show started again, it was calling me. I'd already watched about ten minutes and it was up to the last five of a particular segment. Stopping at the end of a segment means a "clean break" while failing to complete it would mean that it hadn't been worthwhile watching the first ten minutes. My wife was aware that I liked the show and that I hadn't seen it for a couple of years but she continued talking. Obviously that means that her information is "more important".

Now when I'm listening to someone - and this is true for most "reformed" aspies, I need to pay very close attention to detail. Facial expressions and tone don't come naturally and neither does decent facial/eye contact. It's a struggle to remember everything that "normal" people are supposed to do in conversations while simultaneously trying to reinterpret every single line for "hidden" meanings, emotions that I'm supposed to empathise with etc. It's even more difficult when you're deaf and there's a significant amount of lip-reading involved as well as hard work trying to screen out the screaming, jumping and constantly moving activities of my kids who were wandering in and out of the room.

After a little while though, when I realised that my wife was actually recounting every single detail of her day, the various quotations and sizes and textures of concrete, descriptions of fences, discussions with tradespeople (he said, then I said...) etc, I started to lose contact and drift off. After all, I was really tired. She noticed my attention wandering and got quite upset (understandably). Telling me that I'd rather watch Jerry than listen to her, she stormed off and didn't want to talk to me for the rest of the night. I turned Jerry off (no, I didn't watch the rest), made myself dinner (it was a "make your own" night) and went to bed early.

It's true that at the time, I did have an almost overwhelming urge to "complete the task" (Jerry) but at the same time my reserves were completely drained. Over the past two days, I'd found myself "drifting off twice during technical meetings" and it had taken a lot of effort to get back on track. Home is one of the few places I feel like I should be able to "be myself". Unfortunately, that means that I'm less disciplined in social graces at home.

There are a few things to take away from this. I can't expect my wife to change automatically, since she was mostly unaware of my uncommunicated feelings and had a lot of important information to tell me. It's all up to me to change.

On my part;
  • When I've had a draining day like that, I need to find a way to safely and sensitively ask my wife to postpone discussions until after dinner. Dinner gives you more energy to go on.

  • If a discussion starts to get technical to the point where I'm having trouble following it. I need to find a way to safely and sensitively halt it and move it to a more appropriate place. Say, the dinner table, with no TV and after the kids are in bed.

  • If I'm watching a TV show with only five minutes to go, I need to make sure that I communicate that fact to my wife when she starts talking. Again, somehow I need to get this into an empathatic and sensitive form.
I guess my real problem here is how to redirect conversations without offending. It isn't a problem at work because I never redirect conversations there - I'm a "slave" to my fellow employees. Conversations are usually more formal at work too. If someone wants to talk to me about something in a lot of detail, they often arrange a meeting in advance - it's free from distraction, I know in advance and I've had time to prepare.

Unfortunately, thus far, I don't have any answers to provide. I've never been successful at redirecting conversations at home and each and every time I try, I offend.

Saturday, May 9, 2009

The Human Side of the Aspergers Diagnosis: Part 3 Telling Others

A Quick Recap
Thus far, we've looked at the effects of an aspergers diagnosis on parents (of younger children) and on the Aspies themselves.

In this post I want to look at how other family members, colleagues, teachers and friends react.

At a very young age, there is little reaction from siblings towards the diagnosis and its effects. Any young sibling reaction tends to be directed towards the perceived "differences", not the label.

This begins to change as the affected child grows older and gets more "special treatment". Its common for mothers to "baby" their aspergers children and this can cause resentment with siblings.

If a diagnosis is revealed to a sibling at adulthood, the result is often denial and dismissal. This is similar, though often stronger than the similar reactions expressed by parents when their adult children receive a label. Older siblings often consider the label an attempt to "get more attention" or a personal attack on their genetics.

Teachers invariably respond to the diagnosis with "over-simplification" and an underestimation of ones abilities. There is often a degree of irritation and/or sympathy thrown in for good measure.

The worst problems arising from these reactions tend to result in children being placed in "slower" remedial classes, given over-simplified work and generally being mollycoddled for no good reason. Such treatment can often impair a child's academic chances.

The irritated reaction is also problematic and many teachers who simply "do not believe" the condition either make it a personal crusade to get a certain result from the child or otherwise make every effort to remove that child from their class. I have seen instances where labelled children who are considered to be a "disruptive influence" are sent out of class or allocated a special desk simply to keep them out of the teacher's way.

Like all people, teachers have varied reactions. Regardless of the policies and tolerance of the school, not all teachers are suited to special needs students. Parents should pay special attention to each new teacher's performance at the beginning of the year to determine whether the most suitable invidivuals are teaching their children.

Colleagues and Friends
Before revealing your "label" to people who don't necessarily have a need to know, you need to carefully consider what you expect from the reveal. You may be expecting sympathy and understanding but how exactly do you want it manifested? Do you just want your boss to be understanding when you feel anxious and need to leave suddenly during the day? Do you want them to feel sorry for you? Do you want them to keep you out of meetings whenever possible?

Your boss needs to be productive too and depending on the size of the company, he or she may ultimately need to be responsibile for its productivity.

You need to carefully consider the reasons for the reveal and decide first whether or not the boss/company can "afford" your concessions. If they can't, then telling them can often be the quickest route to the exit.

If you feel that your boss will be able to provide the concessions you need, then don't just stop with an explanation of your condition. Tell your boss what would ease your "pain". It may be as simple as "don't expect a lot of eye contact but know that I'm listening". You may feel the need to mention specifics like how sometimes you need to shut your office door to drown out excess noise.

The other thing to consider about a workplace reveal is; who should know. In the workplace, news travels fast and even though you've hand-picked the people you want to tell, the chances are that soon "everybody" will know. If you are having issues with a particular employee or if you feel that you may be harrassed as a result, you should either withhold the information or reveal only under private, controlled and documented circumstances, such as a Human Resources meeting. Even then, you should make it clear (and have it noted) that you do not want the information revealed outside of the meeting participants.

Sometimes, a reveal with friends or colleagues can have very positive effects and an older, more experienced (or more confident) person can take you under their wing. Such "protection" is very useful and you should think twice before brushing it off. In every job I've worked in, I've always found such protectors. They do things like discreetly nudge me when I'm taking things literally, showing a lack of empathy or otherwise committing social "sins". This usually enables me to correct my mistakes and avoid the worst of any backlash.