Thursday 30 June 2011

Richard's story

My friend Richard is an older adult with Asperger's syndrome.  After giving him a lift home from last year's National Autistic Society Annual General Meeting and listening on the way to an abridged version of his life story, I asked him if he would write down some of his memories and reflections so that these could be shared with other people.

In my experience, older adults with autism are a group who are quite significantly neglected when it comes both to general awareness about their existence and their needs, as well as service provision to meet their needs.  It also appears that they don't have as much of a collective voice as other (younger) groups of people with Asperger's syndrome.

I was hoping that the National Autistic Society would publish his article in their 'Communication' magazine, and duly approached the editor with Richard's article and a request that it be considered.  Her response was

'Although I really liked it, realistically I don't think I will have an opportunity to publish it any time soon.' 

Richard and I discussed that what may really be meant by this is that the NAS perception is that the article is too negative. I felt quite upset on Richard’s behalf that not only has he gone through life without support and recognition, but also even his memories of experiences and his reflections on the impact of his condition on his life chances were not to be given a voice.

It is quite possible that such an account would help to raise awareness and understanding of the condition and it would certainly have been good to see someone from this generation given a voice.

Richard wanted to write an addendum to the article after having been rejected by the NAS.  Both are reproduced here in their original form.

My Asperger’s
I was not diagnosed with Asperger’s Syndrome until 1994, when I was 48: really too late to do much about it, although my sister had suspected it a few years earlier on reading a review of ‘Rain Man’.  Of course, since no two people are ever alike, I did not fit exactly.  Neither of us had ever actually seen the film.  Most things then fell into place.  My mother, then 84, who had an incredible memory and had lost none of her mental faculties, could recognise the signs going back almost to my birth.  She could also recognise the signs in several members of her family.
I am now 64, so am in a position to look back over more than half a century and see where things went wrong, often disastrously.  Perhaps I could have avoided some pitfalls had I known, but I never received any useable help.  On the few occasions when I did have help, I rarely acted appropriately, as the help was always in the nature of ‘pump priming’, expecting me to catty on where the helper left off.  But a pump can only be primed if its valves and seals work in the first place; for ‘valves and seals’ read ‘brain formation’, which, for those on the autistic spectrum is not what the world regards as ‘normal’, so normal help and advice will not work.
Like many with Asperger’s, I managed fine up to 11 years old, although I now realise that I taught myself to  a large extent.  I have no recollection of learning to read, it just happened, often with unsuitable (when one is considering reading primers) literature.  ‘The King of the Golden River’ (at 6), a 19th century treatise on locomotives and an Ordnance Survey 1 inch map (at 8).
Things went badly awry at 11.  I was made to go to Manchester Grammar School by my father who had enjoyed his time there (1917 – 24) but by my time (1957 – 64) it had changed greatly.  I hated everything about it as I could not cope socially.  I could not manage the team games and I could not cope with maths.  To this day, my maths has never progressed beyond the primary school level and I cannot understand how the players communicate in a team game.  Most of the rest of the school work I can still remember.
I had neither advice nor help from home or school, only bullying and cruelty because it ‘would not go in’.  I do not remember receiving one work of praise or encouragement from age 11 to age 17.  Yet I actually liked all the subjects except for maths, but the general social problems pulled everything down.  One cannot learn in that environment and the help I needed was never forthcoming.  The only bright spots were the Easter and Summer school camps and (for my last 2 years) 3 weeks trek in the Highlands.  I excelled in woodwork and metalworking (taught but frowned upon).  I found myself all alone in wanting to go into horticulture but the mathematics involved in the inevitable associated sciences – chemistry and physics – meant that I did not do well and never went to college for many years.
Problems and unhelpful solutions
I have no recollection whatever of adolescence.  After I turned 11, all I remember was that whatever I did was inevitably wrong.  My father punished me because I was not what he wanted and my mother just stood to one side.  Many years later, she said she was ‘puzzled’.  My father was competitive, though his surviving siblings were not.  The fact that I had, and have, no interest in competition certainly did not help.  Perhaps he wanted me to be a substitute for his two brothers who died young, one as a four year old.  Only my father’s two surviving brothers were friends – I had no others.  All I learned about life was that I was odd, useless and unwanted, and being so, I never attempted to make friends.  The inevitable result was that the self-confidence I had at 10 had disappeared completely by 18 and I never regained it.
I think that here lies a fundamental problem for people with Asperger’s Syndrome.  Because they never act appropriately, one of three things always seems to happen: they may be ignored or bullied because their clumsy attempts at socialising irritate, upset or annoy others; they may be punished mentally, physically or both because of their inappropriate behaviour or lack of conformity to social norms; or they may receive the help that other people think they need – which is nearly always unsuitable or unuseable and quite often does great damage.
Unsuitable help means trying to teach someone the ‘normal’ social skills.  It will invariably be less than satisfactory because one cannot teach what to most people is instinctive.  The only persons who may stand a chance of teaching these skills would themselves have Asperger’s and so would perhaps be able to see what a ‘normal’ person, having no experience of Asperger’s Syndrome, cannot see.
The other form of help, the ‘unuseable help’ is the sort of ‘pump priming’ I mentioned earlier where the pump is deficient in some vital part.  This can be seen time and time again when the person with Aspergers is taught (often suspiciously easily and quickly) how to cope with a particular situation.  Nevertheless, despite perhaps a very high IQ the person is incapable of adapting what has been learned to a similar, only slightly different situation.
Being trained in horticulture and plant pathology an analogous situation comes to mind concerning pesticides about which some people may have read.  Some natural, moderately effective and expensive to use insecticides (such as pyrethrum, made from a South African daisy) have been replaced partly by similar but synthetic chemicals.  They are cheaper to produce and, at first, more effective.  Then the pest develops resistance because of an apparently insignificant change to a tiny part of the molecule – a part which plays no part in actually killing the pest.  To return to the person with Aspergers – an insignificant and seemingly irrelevant change to the circumstances renders the teaching unuseable.
This difference, of no obvious relevance to the teacher, means that the ‘blueprint’ will not work.  This is a lack of adaptability which can almost be considered a diagnostic feature of Asperger’s Syndrome, which grows worse as the world becomes ever more complicated. One cannot possibly learn what to do in every conceivable future situation and I do not see (even after 60 years) a way around the problem.  Often the problem is not too great in the primary school.  The big stumbling blocks occur at age 11 – transition to secondary education, and above all at the inevitable job interview.  Every job interview is different.  Since one cannot anticipate every future situation, what is to be done?  The problem will never go away, nor lessen with time.  Too often it leads eventually to a total loss of self-confidence.  Confidence is a very fragile thing and once lost can rarely be effectively restored.  Incidentally, I have found that if a Personnel Manager is present at an interview, that interview is more or less a waste of time, as these people and people with Asperger’s are practically incompatible.
Living with Asperger’s
The impossibility of recognising subtleties except when too late (i.e., a complete lack of social spontaneity) meant that I could not understand the concept of a career.  I can tell, more or less, if something is socially ‘wrong’ but unless very obvious, it may take me a long time.  So, all my life, I have spent much time escaping from, or trying to avoid, situations I find socially intolerable.  The inevitable result has been loneliness, no career and very hard work – work that has proved stressful or physically demanding and sometimes both.  I am now 64.  I cannot go on like this much longer… what life is there for a person with Asperger’s in old age?
Nowadays, with the ever increasing complications of life, everyone, ‘normal’ or not must be able to understand and cope with abstracts – bureaucracy, forms, interviews and finance.  These are all the things I could never do.  When younger, I managed by doing everything myself – from mending clothes to welding the car.  What happens when I can no longer do things like this?  How do I tell when I am going wrong, being cheated or fleeced or when someone is trying to offer unsuitable help?  If I have not learned these lessons in over 60 years, it is unlikely that I will ever learn them.  I am sure that I am not alone in this predicament.
I lack most of the trappings of modern life, probably because this does not interest me.  All I ask is a true friend (not just an acquaintance), with whom to share life (something I have never had) and to be allowed to do things I like doing that do not inconvenience or upset anyone else, without being regarded as a freak.
There is a great deal of political correctness spoken today about ‘learning difficulties’.  I have ‘learning difficulties’ – by that I mean difficulty in learning certain things and difficulty in coping with the way something is taught.  If I am being taught something and a (possibly not very important) step is left out,, I may become totally blocked.  I am unable to ignore that part and return to it later on.  The whole learning process for that subject stops indefinitely.  So, whilst I have an IQ of 150 (yes, I was once a MENSA member), I have never been able to properly understand maths, finance, law, religion or philosophy and I have great difficulty in understanding human behaviour. 
All these ideas are a closed book to me because, somewhere along the learning process, I have become ‘blocked’.  I can recall nearly everything else I have learned, which is quite a lot in 60 years.  I do not have a ‘photographic memory’, but, given a few cues, the memory returns.  Mostly I recall bad situations so as to try to avoid repeating them unless the situation was so stressful that I was unable to learn anything from it.
Maybe with my vocation and interests, I would have done better in the 18th century than in the 20th, probably because life was less complicated and my largely rural skills more in demand. There is no place for me in the service economy of today and looking back, I realise now that there never was a place.

This short article must appear to paint a very depressing picture to the reader, whether they be a person with Asperger’s Syndrome or the parent of someone with Asperger’s Syndrome.  Unfortunately it probably paints a fairly typical picture.  Now that so much more is known about the condition, and so much more is being done to help children and adolescents than was done when I was younger, we must never forget that all those people will be old one day and their parents will not be around to help them.  Asperger’s Syndrome is for life – one cannot grow out of it.
Many older people were late, often very late, in being diagnosed and so have never received the help they needed.  Their often considerable skills and talents have mostly been wasted, when they had so much to offer to society.  Whilst helping people with Asperger’s to cope with the ever increasing complexities of life, not to mention the problems that are inevitable as we age, it is important for researchers and those who will come after us, to record our life’s experiences.  Only in this way will the lives of children and adolescents be made fulfilling right into old age.
It is important that we do not abandon people with Aspergers once they reach adulthood, as so often seems to happen.  Let us make certain that support and help, when needed, is available throughout life.  Here, I am thinking of some form of Advocacy service, available at fairly short notice, to help in difficult situations, especially in connection with new employment or the bureaucratic complications of modern life.  Many people with Aspergers live alone and have no close friend or relative to turn to for advice. 
I am sure that the majority of people with Aspergers would welcome something on these lines and not abuse it.  The trouble and cost of such a service would be miniscule, compared with the benefit it could bring, especially in the field of employment.  People with Aspergers often have unique and special abilities and can offer so much to society.
Please don’t let these abilities go to waste.
Richard Finch, June 2011
Richard isn't connected to the internet but I've said that if anyone would like to ask him questions, I will print them out and drop them off for him, so that he can pen a response, which I can then reproduce here.  A somewhat slower way of having a dialogue - but it's good enough :)