‘Like Susan Boyle, I was diagnosed with Asperger’s as an adult and my husband has it too’

Pride of Britain Awards 2012 - ArrivalsBritain’s Got Talent runner-up and powerhouse vocalist Susan Boyle has been diagnosed with Asperger’s Syndrome at the age of 52.  Like Boyle, Sandra Beale-Ellis was diagnosed with Asperger’s in adulthood – at the age of 43 – and her husband also has the condition.  She tells Healthista why she wouldn’t change a thing

 

Coincidence or Fate? Autism and The Myths

Mention the word autism to a group of individuals with little or no knowledge, and they are likely to have an opinion.  Autism is one of those words which are gaining increasing recognition in today’s society and unless an individual has some kind of connection to it personally or professionally, the likelihood is that their knowledge is not quite as accurate as they may like to believe.

The definition of autism, according to the National Autistic Society is ‘a lifelong developmental disability that affects how a person communicates with, and relates to, other people.  It also affects how they make sense of the world around them’.

According to the most recent statistics around half a million individuals in the UK have autism and around a million individuals in the USA.  There is no central register, and many individuals have not received a diagnosis, or are even aware of having the condition, and therefore these figures may well be grossly underestimated.  What should not be underestimated is the effect autism can have on the lives of those who live with it.   It was first discussed by Leo Kanner in 1944.  Asperger’s Syndrome was only recognised in Britain as a separate diagnostic category of autism in 1994 but was realised by Hans Asperger in the forties.

I should mention here, that I am one of those individuals.  I was clinically diagnosed with Asperger’s Syndrome (AS); an intellectually high functioning form of autism which shares many characteristics with other forms of autism, at the age of 43.   My husband, now 52, was clinically diagnosed four years ago and two other family members have a diagnosis.

My journey to discovery started with a child, Tom, who I was teaching in my karate classes (I am a karate teacher). He was a little distant from the others, had poor eye contact and responded to questions with long drawn out answers.  At the end of one class, about a year after I started to teach him, his mother produced a card from the National Autistic Society, which explained Asperger’s Syndrome.

‘I thought you should know that Tom has this condition’ she told me.  I was intrigued.  My only point of reference for autism was the film Rainman.  After the class I did what I normally do when something new arises, I went to the bookshop and bought a book about Asperger’s Syndrome.

rain man

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After a week of reading I was fascinated and Tom’s classes improved no end as I tried to support him and make his learning experience better.  His mother, impressed at my research efforts, spread the word and fourteen years later Joe and I have taught probably over a hundred children with some form of autism.   With both of us having a diagnosis, parents seem to trust their children with us.  We have an affinity with them and can understand how they might be feeling.  We also teach adults with autism of course.

Sandra and Joe Autism

Sandra and her husband, Joe

Along the way I undertook several courses to increase my understanding and for the past four years I have been at Sheffield Hallam University’s Autism Centre, studying for a Doctorate in Education.  My research has been around the learning experiences of young autistic individuals within the informal education area; that is, outside of the school curriculum, which is an area largely missed out in academic research.  My thesis is shortly to be submitted and examined, and will then be turned into a book.  The aim is to help educators and students to create a more positive experience which will shape their adulthoods.

From an expert perspective, both personally and professionally, I hear many strange and often very frustrating ‘so-called facts’ about autism.  Of vital importance is one fact that every individual with autism is different – no one person has the exact same presentation of traits, characteristics, behaviours or opinions.  People ask me ‘so what makes you autistic’?  It is a question I find very difficult to answer succinctly, as there is no one characteristic which defines autism and just because I have that particular characteristic does not make me autistic.  You may have the same one, two or even three characteristics but not be autistic.    Since my diagnosis I have heard time and time again ‘well I am obsessively neat, I like to follow rules, I get angry, I get anxious, I am shy with new people’  Possibly true, but not everyone has all of these things and certainly not to the soaring level that an autistic person might.  Even Dr Judith Gould, consultant psychologist and Director of the Lorna Wing Centre for Autism in Kent, agrees that many people will have some autistic character traits.  She says: ‘When you have a lot of these behaviours, you may have difficulties’.

The main difference between an individual with and without autism is on the whole agreed by experts to be the lack of social instinct.  ‘From making eye contact or small talk to shaking hands and jokes, people with autism or Asperger’s lack the inherent social awareness the rest of us are born with’, says Dr Gould. ‘Often they may seem uncomfortable in social situations and may appear rude’.  The worst thing you can say to someone with autism is ‘but then we all on the autism spectrum somewhere?’  This makes me so angry.

You may see autistic individuals at social functions and wonder what all the fuss is about; but look within the person and you will likely unearth a whole bundle of emotions bubbling away, threatening to burst out at any moment.  A mountain of anxieties, discomfort, tiredness, anger, frustration, and the urge to scream loudly can send the individual into complete meltdown and appear to just fade away, becoming still, silent and as if in their own little world.  Many of these individuals become good social actors, as imitation is a common autistic trait and some are more proficient at it than others.

Dr Linda Buchan, Consultant Psychiatrist at the Sheffield Asperger’s Syndrome Service, who finally diagnosed my husband Joe, agreed that ‘adults with Asperger’s Syndrome are slipping through the net because their outward symptoms are subtle and they may get by on their intelligence or by copying social niceties, even if they don’t understand them.  That doesn’t mean they’re not secretly going through hell.’

I often hear the term mild autism and this is repeatedly associated with Asperger’s Syndrome and high functioning autism.  Believe me, when you have lived with AS, you will realise there is nothing mild about it.  When you are having an anxiety about an upcoming event which could be simply catching a train to somewhere new, which makes you physically sick, often for days or weeks before and after; when your spouse has erupted into a complete and unexplained rage, screaming and throwing things twice or three times his weight, because he can’t find his keys, or you said something innocent which he considered sarcasm; you will realise there is no mild autism.

As part of our job, we often have to attend long weekends of meetings, examinations, social functions and so on.  It can take us a week or two to recover from the tiredness this causes.  For the past nine years we have been associated with martial arts, an activity which requires numerous social functions from small dinners to large charity balls.  This past year we have been in charge of organising these.  I love to organise but we are so exhausted we have made the decision to end this activity and take a year out to recuperate from the internal and physical strain it has caused.  Too many people plus too much information plus too much sensory stimulation has equalled exhaustion for us.

While my nemesis is clearly anxiety, Joe goes in the opposite direction and can fly into a sudden rage for no apparent reason.  Over the 24 years we have been together, my own obsession with organisation and attention to detail has allowed me to develop household systems which will ensure things remain in place and ready for Joe when he wants them.  This results in fewer rages and when we are both over tired and close to meltdown with a busy lifestyle, can calm us both down to an extent.  We work well together, but despite us both having the same condition, we couldn’t be more different.

Another myth is that autism can be cured.  I have heard students of mine say ‘I had autism when I was younger and I no longer have it’.  Impossible!  You will read articles on the internet and in specialist magazines, discussing possible cures.  There is not a cure, and frankly as an autistic person, I do not want a cure.  If there was a pill to take, which meant I would no longer be autistic, I would choose not to take it.  After all, despite only having a recent diagnosis, I have probably always been autistic.  My childhood was shaped by my autism although we did not know it.  Would I have started to walk at ten months, or read when I was three, or been successful in dancing competitions at four because I was absolutely obsessed by dancing, if I had not been autistic?  Would I have been so focused and passionate about everything I did as a child, as a teenager, and now as an adult?  Would I be the success professionally that I am if I had not been autistic?   Of course no-one can answer that really, but there is every likelihood that the answer to many of those questions would be no; and I have no wish to be cured of any of those things.

There are currently 225,000 British adults living with Asperger’s Syndrome and it is thought that one in four of these are male.  It is agreed that women tend to be better ‘actors’ and cope with difficulties internally.  There are probably far more women with the condition than it is believed, and research is starting to examine this area more.

As more children are getting a diagnosis, one or both parents are suddenly realising that perhaps they may have the condition.  As their awareness increases they realise that other family members may be affected as well.   The Post Graduate Certificate in Autism and Asperger’s Syndrome run jointly by Sheffield Hallam University and the National Autistic Society, was where I initially gained my knowledge and was when I realised that Joe probably has AS.  It was a lecture about sensory issues; Joe’s propensity to stripping off as soon as he was inside the house, wearing short sleeves all year round, the colour red triggering a rage, knowing if I had changed the brand of baked beans, bright lights affecting him in restaurants.  The list of what I used to call Joe-isms’ goes on.   I now work with the Sheffield Hallam’s Autism Centre in delivering this programme.

Sandra with Dr Lorna Wing and the Chief Exec of the Burgess Autistic Trust, where Sandra and Laura both spoke

Sandra with Dr Lorna Wing and the Chief Exec of the Burgess Autistic Trust, where Sandra and Laura both spoke

Words that I loathe which are often associated with individuals with autism are sufferer and battle.  I reserve these words for illnesses and diseases which are inflicted on an individual and which they have to live with for a period of time, be that short term or long term, and often for which they are treated, or sadly not.  Illnesses such as cancer, arthritis, heart disease, or muscular dystrophy, the first three of which I have suffered and certainly battled through.   I maintain I suffer with Joe’s AS and he with mine.     Autism is a condition that I am, rather than I have.  Although controversial within many disability debates, I prefer to be an autistic individual rather than an individual with autism.   That is my personal preference and certainly does not apply to the entire autistic population.  Society has conditioned us to fight labels, and many parents will say they do not want their children ‘labelled as autistic’.  I might argue that by preventing this diagnosis, the child will be labelled in other ways: argumentative, rude, undisciplined, pedantic, unsociable, awkward.  These labels are disrespectful, negative and inaccurate.

There are many traits of autism deemed against the norm, and different from non-autistic individuals, thus not acceptable by society, but I feel fortunate to have many of my autistic traits as they have assisted my success and make me who I am.

I interpret many things literally, which can often cause confusion and idioms are sometimes used which I do not always understand.  I simply do not see the point of them and consider that accuracy is important.  If every one actually said exactly what they mean, the world would be far less confusing and far more honest.  For example, if I ask my husband the infamous question ‘does my bum look big in this’?   He will always tell me the truth whatever, and I expect the truth.  Surely I would not have asked the question unless I wanted to know the real answer.  What would be the point otherwise?

I am a great planner, I pay a lot of attention to detail and see this as a good thing.  I detest chaos and clutter.  I like to know exactly where my things are and like them to be very neat and tidy.  Does it not make sense to know exactly what happens, when and for how long?  I am focused and obsessional, yes, but why does that have to be a problem?  I am good at my passions, reading and dancing, surely that is positive; they make me happy, help me to relax, make me feel motivated and inspired.  Who would not want to feel that way?

Under the Autism Act passed in November in 2009, the Department of Health produced statutory guidelines for local authorities and Primary Care Trusts to help improve the diagnosis and care of adults with autism.  These include training for GPs in diagnosing autism related conditions.

When Joe went to his GP having suspicions about the condition, he was most unhelpful and only made Joe feel angry by ignoring the problem.  I arranged for his diagnosis through my contacts in the Sheffield Hallam Autism Centre.  Psychologists routinely diagnose autism related conditions through lengthy interviews trailing patterns of behaviour from childhood to the present.  Interviews can often include partners, parents and other family members, and questionnaires are used as a tool such as the Autism Quotient (AQ) test, initially developed by Cambridge University’s Autism Research Centre.

There are sceptics out there; professionals who have declared that autism is simply a state of mind and members of the public who think it is about getting attention and claiming benefits.

You only have to live with it to know of its existence; to experience the absolute exhaustion, the overwhelming feelings and emotions; and the discomfort in highly sensory environments; as well as the sheer terror of many social occasions.

Aspergers’ Syndrome is part of who we are.  If people don’t like it, that’s tough.

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