Thursday, 7 April 2011

Me And Asperger's

It is interesting the impact that genealogy (tracing family trees) can have.  A friend of mine once said that all the people he ever met doing that (and he spent a lot of time in local record offices) were convinced that they were somehow related to the Royal Family.  I met one women who certainly was not convinced of that, as she knew that for many generations her family had served royals on a particular estate.  Finding out genealogical information is the second greatest use of searching on the internet after seeking out pornography.  My own family got into tracing their family back in the 1970s long before there was a public internet and anyone had even thought of computerising censuses.  There were certainly on online discussion groups around particular names or database software to lay it out sensibly.  They managed to get back into the mid-19th century before the paper-based resources ran out.  Of course, most of us are descended from labourers and only occasionally some ancestor who was interesting pops up, usually for doing something that would have been condemned at the time, such as committing a crime or adultery or running away to London.  One friend of mine found out his mother had lived on estates in India where her father was a manager and then moved to Mesopotamia (now Iraq) where he oversaw road building.  Despite a range of photos from the 1930s she would not talk about it and now she is dead that slice of a colonial life is gone.  Another friend's relative was a female script writer who left Scotland to work in Hollywood in the 1920s, presumably given some credit on some silent movies, maybe under a pseudonym at a time when very few women were in that line of business.

Anyway, this is not a posting about genealogy though it does touch on inheritance and discussion of what now seems clear that I suffer to some extent from Asperger's Syndrome, was triggered by a cousin of my mother's exploring her family tree.  I had absolutely no memory of her, though apparently we had met when I was a child in the 1970s.  It turned out that we lived 48Km apart and for five years I had been working in the town where she lived; if I had been able to secure a post I was interviewed for late last year, her son would have fallen into my remit, totally unbeknown to either of us.  I have not ascertained her age, but there has to have been some generation slippage as she is far closer to my age than that of my mother, but I guess that happens when one sibling marries early and has children young and another does it much later, especially if this then repeated by their children.  When at primary school I had friends who were already uncles.  Anyway, she had been carrying out genealogical research and emailed me to ask if I was interested in seeing what she had uncovered.  I have no memory of meeting her mother but knew the woman by reputation due to her three marriages and her involvement with political movements abroad, things that enter the folk memory of a family far down the different branches of the tree. 

We got into discussion about common ancestors and she also spoke about her children, ranging from grown-up to primary school age.  She mentioned a number had conditions on the autistic spectrum, which encompasses things such as dyslexia, dyspraxia, Asperger's and autism itself, all with varying degrees.  This brought back to mind an informal diagnosis I had had three years back in which it was suggested that I had Asperger's.  I did not want a formal diagnosis as I feared it would count against me in job applications.  Mental health issues still seem to remain a taboo subject and one for which covert discrimination is rarely challenged.  When raising the issue of me possibly having Asperger's with my immediate family, I received completely no response and a kind of metaphorical awkward shuffling of embarrassment that I might be daring to say that such a condition could have been passed down to me. 

Bascially, the characteristics of someone with Asperger's are as follows: at least average and often high level of intelligence but difficulty with high-level language skills including reasoning and problem solving as well as taking things literally, a challenge in our coded and euphemistic society.  They may lack of empathy with others partly through an inability to see another person's point of view.  This can hamper close relationships with people.  The emphasis on focused tasks is a commonly known trait of people with autism with people referencing Dustin Hoffman's autistic character in 'Rain Man' (1988).  People with Asperger's might find it difficult to chat or have 'small talk' because in many ways there are far more important things to be thinking and talking about.  They may be unable to control anger, depression and other worries.  Though, saying that, seeing all the road rage and anger which you witness on a daily basis, I do wonder if that is now a trait of the bulk of the population.  Perhaps the challenge is that they cannot articulate their concerns well or through lacking empathy with others, see these challenges as being just for them alone.  The adherence to personal rules and rules set by others is another well-known trait as is a focus on a particular pastime or activity.  Again, many people like to structure their lives and in certain jobs and in studying these are in fact real strengths.  The challenge for others is the stress the individual experiences when their routine is broken.  However, I have also seen the positive side.  Having worked occasionally with people with degrees of autism, I know how hard they work. 

Another trait is talking at length on a subject.  In the past that would have been less of an issue, but these days when everyone wants everything communicated very quickly, the enjoyment or the need someone with Asperger's gets from outlining on their favourite subject, is actually seen as unacceptable.  People with Asperger's often tend to misinterpret body language or other cues.  However, I believe that they also have a different valuation of what is in fact important or the truth.  Often today, many people put much emphasis on very frivolous subjects and present themselves as things they are not, things which are an anathema to a person with Asperger's. Thus, while there is more recognition of the condition, how it manifests itself may now be less acceptable in society than it would have been 50 years ago when someone with Asperger's would have simply been put down as a 'windbag', a 'bore' or 'eccentric'. 

Reflecting with my distant relative about my grandfather and his generation of the family, we certainly can now see rather obsessive traits that were seen as cranky at the time, as traits of Asperger's.  Apparently men are three to ten times more likely to manifest Asperger's than women are, though given that the symptoms are different between the two genders the ratio, as yet, is not clear.  However, with current knowledge it certainly seems that with my mother and her cousin it could easily have skipped a generation going through women.  Examples of my grandfather's Asperger's-type behaviour include his inability to empathise with anyone else's situation even that of his wife and child; his obsessive driving across Europe in a matter of days; his ability to retain large amounts of information by memory.  Until the 1960s the ability to recite poems from memory or play a piano with no sheet music were admired, but are now skills that are seen as rather 'odd'.  Asperger's is hereditary and given what my relative from that side of the family has experienced as well as my own circumstances, suggests it has gone down through the blood line.

I certainly seem to tick many of the Asperger's boxes.  I went to university at a time when only 6% of the UK population did which suggests that I have above average intelligence.  I am very focused on my hobbies, over 700 postings to my blog in under 4 years probably shows that.  My postings show my focus on 'the truth' and insisting that it is heard, often at length.  When looking at the Changing The Times website I saw just how much more I write about a counter-factual than the average contributor.  Being able to expound on a topic sometimes very complex ones and see its structure, has helped me when running staff training sessions.  I have become aware of not overwhelming people and keeping it bite-sized chunks.  Ironically, I usually use far fewer Powerpoint slides than my colleagues.  However, it might have come from me having to work at such things in the past where as these colleagues have never questioned their approaches.  I have turned my focus on topics into an enthusiasm which is often infectious, so that has turned it into a positive.  My standard structuring of content and slides, probably fitting the issue of routine, has meant some people find what I produce repetitive.  Certainly in my daily life I did adhere when living alone to a pattern, doing the same chores on the same days, and eating the same meals.  Living with a woman and her child has helped bring variety and when we part I will probably go back to my set pattern, though with more ideas, certainly for recipes, if not for doing laundry on another day to Monday.

Asperger's sufferers' tendency to adhere to certain rules, probably explains why I made so many mistakes when dealing with women and that I had no sexual partners until I was 34. It is interesting as at the time, when I was walking away from a potential relationship I could almost step outside myself and seeing I was doing something that was going to make me unhappy and yet was not able to take the step and make myself say the right thing. Issues around avoiding embarrassment and also, importantly, having low esteem after all the derogatory remarks I received over the years from teachers, my parents and other children, which I can recall word-for-word even today, made me feel I was not worthy of going out with that woman.

The greatest problems for me have come in the workplace.  I have to tell the truth, I recognise that now.  In addition, if I am asked to research something and report, I try to do this as thoroughly as I can and most people working in offices cannot cope with that.  They simply want short answers that confirm the view they already hold.  I know having to accept that is actually physically uncomfortable for me as I have to let it lie.  The focus on brevity is also a problem, as the tolerable length of phonecalls and emails seems to fall every year and I am racing to keep up as to just how far I need to cut down the information I am providing.  In many ways as I have posted recently, I do not think this is a useful approach in business as it leads to people overlooking any conflicting or challenging information and ignoring potential pitfalls that they could be alerted to.  We need a culture shift in which those seeing potential problems are not condemned but rather seen as protecting the company from making mistakes that could have been foreseen. 

In terms of empathy I believe I am out of step with the standard Asperger's profile.  I can often connect with people facing stresses.  This often makes me unpopular with management that sees me as 'having gone native'.  However, I believe all workers of every level need respect and an appreciation of the stresses that are being imposed on them especially at times of upheaval in the company or more broadly in the economy and society.  It may be because I have a very accurate memory of many incidents that often occurred 35 years or more ago.  I have been through so many embarrassing and stressful situations that I cannot only call to mind but often haunt me, that even if I cannot understand what the individual is precisely experiencing I can recall my feelings during a similar situation.  So, maybe, my empathy is second hand, but it works better than those who seem to shut down any empathetic sense they may have as a 'weakness' inappropriate for business.  Perhaps if you are a loan shark or an assassin then it is inappropriate, but for the average office or shop job, it certainly is not.

People with Asperger's are supposed not to realise when they have made social faux pas.  I have the completly opposite problem.  I am often unable to make myself avoid saying things which are going to cause embarrassment, but am immediately aware of the embarrassment caused, it is almost a physical thing, I can sense the wave of embarrassment sweeping through the room.  Subsequently such incidents will haunt me and something I said wrongly back in the 1980s will be replayed vividly in my mind, pricking me with the embarrassment yet again as if it had happened only moments before. This has made me a very cautious person and very nervous of getting into any situations that have the potential to lead to embarrassment. 

I know we all blush when embarrassed but I feel distinctly uncomfortable through my entire body, with my stomach screwing up and I feel very nervous when witnessing other people in embarrassing situations, even if it is simply a character on television.  I cannot watch scenes in which people have no chance to get out of a situation or they suffer simply as the result of the caprice of someone else.  In real life I hate seeing people arrested and will walk away or in one case gave a stranger £20 so he could pay his train fare rather than me having to witness him being fined.  To some degree I have an over-empathy even with complete strangers and can see myself precisely in their situation.  This seems counter to one of the standard traits of Asperger's but as all the advice notes, the symptoms vary a great deal between individuals.

Possibly more characteristic were other phobias that used to be strong in me when a child.  One thing I loathed, again with an almost physical reaction was being compelled to wear a badge or a sticker with any writing on it. Even now I avoid teeshirts with designs on the front and though I can tolerate a small logo over the breast pocket, I am physically conscious of it being there as if it was on my skin rather than my clothes.  Another one was what friends and I called 'ticketaphobia' the fear that I would lose a train ticket (usually envisaging it falling down that crack between the train and the platform) and so would get into trouble.  I also avoided going into shops just to browse, convinced that I would be accused wrongly of shoplifting.  If I had nothing to buy in the shop I would wait outside; some shops were worse than others, I remember I would stay away from one local toyshop in particular, I believe, because I had seen them accuse people of shoplifting when I had been in there.  When at university, asking among a group of 15 friends, I found out I was the only one who had never shoplifted.  I once witnessed a friend do it and was very distraught.  These days with electronic tags it is far harder back in the 1970s it seems that shoplifting by children was endemic, but not for me, I could not even stomach others doing it let alone myself.

Since looking into Asperger's I have become aware that I probably process information differently to other people.  When reading about how autistic people tend to believe that anything they know must be know universally even if it is kept concealed, I realised it showed a different way of processing.  I think the one example of this I have been aware of longest is that when I read some information or a story, I immediately associate it in my mind's eye with an image of a location, usually one I have visited.  Now, the place may have nothing to do with the details or the information or of the story but it becomes a kind of 'tag' which is triggered when I come back to the book or article.  I realise that trying to stop that happening missed a trick when I was at school.  I should have developed it and developed a kind of visual library in my mind, a quite reference system back to the information or story.  I find now that a lot of my writing is triggered by images rather than other input such as sounds or smells.  Certainly the focus on a task and ability to keep details in my mind often for years, really helps doing creative writing and that is one aspect of the condition that has helped my hobby and may explain why I started doing it in the first place.

Another issue though, is other things I obsess about.  Perhaps this is why people with Asperger's have a tendency to get so angry or depressed, we cannot let the thing triggering those feelings, go from our minds.  There are a few examples of useless things that worry me regularly that are unlikely ever to happen so simply just waste my brain power.  One is that I keep considering what would happen to me if I was thrown back in time.  It has two formats, either I worry about driving on roads in the 1970s or finding work in the Victorian period or surviving with diabetes in the Middle Ages or I reflect if I was taken back 5 or 15 years in my own life and begin thinking of all the different decisions I could/should have made to lead to a better life.  These are regular thoughts in my mind which come back like a sore muscle.  It was naturally exacerbated by watching 'Life on Mars' and 'Ashes to Ashes' especially as they sent the characters back in time to periods I had lived through.  If I could relive my life I would have avoided watching those series however good they may have been. 

A similar example, when using things like biscuits, bread or milk is I begin to worry about being in a nuclear bunker and dealing with the situation when one particular item ran out.  I blame this on all the depressing programmes I had to sit through in my youth about what would happen to us if there was a nuclear war.  Those worries were thrust so forcefully into our lives as children that is probably not surprising that someone like me with my condition, still is concerned with then 20-30 years later.  I have certainly avoided watching the movie 'Blast From The Past' (1999) about a man coming out from having lived with his parents in a nuclear bunker all his life.

The other trait is having empathy for inanimate objects.  I know that I am not alone in this, it was a trait of the character Monica Geller played by Courteney Cox Arquette in the long-running comedy series 'Friends' (1994-2004).  She kept bottles of milk next to each other because she was afraid of upsetting them if she separated them in the fridge.  I do precisely the same, seeing 'families' and 'couples' among products on supermarket shelves and even among biscuits in a jar.  I know it is a ridiculous concept, but it something I have lived with all my life and cannot seem to shake.  I guess this stems from people with Asperger's wanting to adhere to a routine, as similarly I used to always wash out a glass three times to symbolise the Trinity even though I was not at all religious.  Similarly I tap biscuits on the table before eating them, as if I was a sailor from the time of Admiral Nelson.  Back in the 1970s when there was a lot on people remembering former lives, I thought I must be a reincarnation of such a sailor still adhering to old habits.

I think my great difficulty in learning foreign languages, in sharp contrast to the rest of my nuclear family may be explained by Asperger's.  I certainly have a very poor short-term memory and have to flick back and forth between one page or one webpage and another to get information across.  I think I package up foreign words in my brain in a way which means I forget them quickly.  I certainly can only retain one foreign language in my brain at one time.  Travelling to France after having been in West Germany for four months back in the 1980s I found myself almost entirely unable to speak French any longer.  I had no problem speaking English but when I tried to address a French person all that came out was German.  Most notably was the immense difficulty I had in remembering any Chinese characters even in simplified format.

The same problem applies to people's names, I can forget them within a matter of seconds of hearing them.  This makes it very hard when being introduced to a group all at once.  It was one reason why I failed as a school teacher as generally you have to learn 240 pupils' names in the first week of teaching in a secondary school.  That and the fact that I gave them more information in a class than you would get these days on the topic in a university lecture.  For some reason I have never been able to translate my association of novel-with-place to name-with-face.  Recently I have noticed I have even forgotten people's faces if I have not seen them for a while and have been surprised to meet someone again who I had remembered as looking very differently, and even of a different height.  This packaging of information and difficulty in getting certain information to stay in my short-term memory long enough to make it into my long-term memory, I believe also explains my inability to remember martial arts moves.  Perhaps also it is an issue of lack of physical co-ordination, an issue when I played sports as a child and balancing on a bicycle.  Given my clumsiness, I suppose I get no 'muscle memory' either, making it harder to recall the move.  Twelve years of studying Aikido and eight years of studying French have shown me that I am never going to have the mind that allows me to engage with either and, in fact I have forgotten all but a few crumbs of either skill.  It is frustrating given how well I can remember embarrasing incidents from the 1970s; why cannot I at least remember some of my French lessons as well?  I guess it is because they lacked the emotional discomfort that the incidents had to imprint them in my memory. 

I do not know if the diagnosis undermines what I have said on here before about British people having difficulties with languages and martial arts being far harder than the clubs make out.  However, even if you exempt me from the equation, I cannot remember the last time I actually met a British person who could speak any foreign languages, certainly not well, probably back in the early 2000s, so they cannot be that common even among the non-Asperger's British public.  Similarly, you do not meet black belts or even brown belts in Aikido or Karate down every street, so it must be pretty hard.

So, how does this stronger confirmation of what I have help me?  As readers of this blog know, anger and depression are things I have wrestled with over the last few years.  However, I do not think I suffer from them any more than the average person in the UK in these times.  Perhaps bringing me out of these situations needs a different approach from myself and those around me.  Working on anger management through Neuro-linguistic programming (NLP) methods seems to have helped me a great deal.  Apparently looking at behaviour can help people with Asperger's avoid making blunders in social circumstances.  Despite everything that has been going wrong for me since really December 2009, I am more positive than I was even three years ago and certainly better able to cope with the challenges of computer systems not working and idiotic behaviour when on the road.  I also think I was in a spiral, because not being able to do much about either issue, getting angry was a narcotic that gave moments of relief and became pretty addictive.  Certainly now, I do not think I am simply out-of-step with 'normal' behaviour in the way people tell me basically when I will not kow-tow to  them.  I think differently, I accept that, but that does not mean I am wrong.  In fact it seems to help me to address people who also find themselves wondering what the rules are in the UK context, hence working well with people from China and other states outside Europe.  I think if I can assign certain behaviour to 'oh, that is the Asperger's speaking' then I can challenge it without feeling that I am challenging my whole approach to life.  I can categorise different elements and filter them accordingly.  I do not think I will ever shed my commitment to speaking the truth and I support all who do.  I might have a different way of engaging empathetically with people, but I do feel passionately that everyone's voice is equal and no-one should be shut down simply because of what they are.

Living in the 2010s is probably one of the worst times for people with Asperger's and we would have done better back in the 1910s.  This is because of the growing emphasis in society on how things appear rather than how they are in reality.  Someone with Asperger's will always have something to say about the difference between the two.  The emphasis on everything fitting into a tweet rather than being a proper exposition is also going to make it hard for us.  Empathy is increasingly seen as a weakness, though I think that the issue of empathy differs between what the person feels and how they express it and people with Asperger's are just as human(e) in their feelings as anyone else, often more so due to the prejudices they have suffered.  The positive aspects are that we can blog and we can find people who share our hobbies right across the world, very easily, so isolation is not a problem.  Given how poor so much social behaviour is, social faux pas made by people with Asperger's will be far less obvious.  Having Asperger's does not make you call a woman a 'whore' or a man a 'twat', that is done so commonly and derogatively by 'normal' people.  Our problem solving skills may be different, but I believe they are strong because we can hold an idea in our minds for long periods and look at it from so many sides and that is a useful if overlooked skill.  Knowing that I have Asperger's to whatever degree I do, makes some things make sense.  I know it does not hamper my ability to do a job well, in fact, in many tasks it helps.  However, for now, it is probably safest to appreciate that for myself and not risk sharing it with family and (potential) employers.

P.P.  Having drafted this posting and spoken, in passing, to my parents about my plans to go for an official diagnosis (so far I have had advice from professionals dealing with the condition but nothing written on paper) I was stunned by the reaction of my father.  He rung up and bellowed at me that the condition does not actually exist; denied that the genealogist relative was actually any relation of mine, saying that her father was not in fact her true father and then accusing me of living in a 'fantasy world'.  I said that I accepted he might have a different viewpoint on Asperger's.  I have worked with people who have denied that even dyslexia exists and have treated sufferers simply as malingerers, despite all the evidence to the contrary.  I said he was entitled to hold that opinion though I disagreed with it, I would not insult him in the way he had me.  I did challenge him for ringing up simply to insult me.

I think his problem is that he has always believed in a eugenic approach, that people born with particular conditions should not be helped to survive.  He does not go as far as to say that people with genetic conditions should be sterilised or killed, but he is clearly on the path to old-fashioned eugenic views.  I remember that he was incredibly upset when I was diagnosed with diabetes until it was revealed it was from a virus I had caught, not a condition I had inherited.  Now I feel he cannot cope with the fact that he might have passed on some condition like Asperger's even though, from the limited evidence I have it seems more likely to have come from my mother's side of the family.  I note this to warn people if you reveal you have a condition like Asperger's which is often not diagnosed until adulthood, you might get an unexpected and hostile reaction especially from your parents and perhaps other family members too.


Tim said...

I'm reading your blog for a while now, because I'm intrested in some of the same things your interested in. I too, have been associated with aspergers in the past. A lot of characteristics you describe, are similar to many asperger I have met in the past. It is true that because of this age were communication is getting more and more important, asperger people are starting to get noticed. What used to be someone who focuses on very eccentric hobbies, now is diagnosed as a disease. The society of today tries to label every single human to make the world more controllable. Aspergers is also common in my family, although because many of these people are older do not really notice this, because communication is still "slow" in their lives.

What I would advice you, as one (possible) aspie to another, are the following things: Don't be scared to ask other aspies about how they solved problems. I learned a lot from the people in the internet community. Especially that I infact was more normal than I thought, and that there are many people out their with somewhat the same eccentric hobbies as me. Also their are different types of asperger people, some more focussed then others. There are not really solid characteristics which every asperger should have.

Getting a diagnoses could help you finding yourself, which can give some solutions to possible problems you might have. But as many Asperger also recognize, it could give problems on the job market. The same knowledge can be obtained by speaking to other Aspergers and learning from them.

Rooksmoor said...

Tim, thank you for your words of support. Yes, it seems ironic when in culture people seem to accept such diversity, that conversely especially those in power want us to conform more than ever. I assume I have the condition since I was a child and yet have pursued academic study and a career without facing difficulties. It seems only know, perhaps due to rising unemployment, or what I see as a bit of a backlash against people with disabilities, and more broadly, about values of equality, that it has begun to cause a problem. I have noticed in the past 5-6 years more managers unafraid to make derogatory remarks about people's conditions.

In many ways I missed an opportunity in the job before my previous one, where there were professionals working who knew about the conditions along the autistic spectrum and supported people working with such conditions.

Despite having built up my courage to take steps, over the past two years, given the very negative response of my father, I am now again hesitant. If my own father can be so prejudiced, telephoning me to simply ridicule me, what reaction can I expect elsewhere?

I think a professional diagnosis could help protect me if I ever get a job again. Generally you have to complete an equal opportunities form which is not shared with your managers and on that I already declare my diabetes, which, since 2005, has been considered a disability. If I had an Asperger's diagnosis and began to suffer the discrimination on those very grounds as I did with my last employer, then it might form the basis of protection. Though saying this, access to tribunals is being cut back.

Having talked through these issues with my girlfriend has been the major gain from this analysis. It has really helped our relationship because she can understand why I behave in certain ways, and I am getting better at pre-empting behaviour that can cause her unease. Any further steps, I feel, will have to wait until I am back in work and can liaise with occupational health.

I am grateful for your comments, they have given me additional aspects to reflect on before I take any further steps.