© 2016 The Autistic Voice
Essays
Aspergers' Syndrome is part of who we are. If people don't like it, that's tough.
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 as to what it means. 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 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. Indeed just this year the separate diagnoses of Asperger's Syndrome was removed from the diagnostic reference manual (DSMV). 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 I was teaching in my karate classes; 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. 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.
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 very 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 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 equals exhaustion.
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 that 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 the 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.
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 which are deemed to be against the norm, and different from non-autistic individuals, thus not acceptable by society, but I would strongly argue that many of these traits are logical and can be extremely positive, perhaps even giving the autistic individual certain advantages. I certainly feel very 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 is a very 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? There can be no confusion, less anxiety and less frustration. 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 very happy, help me to relax, make me feel motivated and inspired. Who would not want to feel that way?
The next time you hear the word autism or come across an autistic person, please think carefully before you speak; before you dismiss the magnitude of the condition; before you list all the characteristics you have which are similar; before you judge outward appearances without knowing what is going on inside; before you make assumptions. If you find you really cannot do all these things, perhaps you should consider that you may also be autistic. After all, it is thought that two adults with undiagnosed autism are seen by their GP in the UK every month, and one of them might well be YOU.
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 just made Joe feel very angry. 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.
Mention the word autism to a group of individuals with little or no knowledge, and they are likely to have an opinion as to what it means. 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 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. Indeed just this year the separate diagnoses of Asperger's Syndrome was removed from the diagnostic reference manual (DSMV). 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 I was teaching in my karate classes; 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. 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.
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 very 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 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 equals exhaustion.
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 that 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 the 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.
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 which are deemed to be against the norm, and different from non-autistic individuals, thus not acceptable by society, but I would strongly argue that many of these traits are logical and can be extremely positive, perhaps even giving the autistic individual certain advantages. I certainly feel very 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 is a very 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? There can be no confusion, less anxiety and less frustration. 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 very happy, help me to relax, make me feel motivated and inspired. Who would not want to feel that way?
The next time you hear the word autism or come across an autistic person, please think carefully before you speak; before you dismiss the magnitude of the condition; before you list all the characteristics you have which are similar; before you judge outward appearances without knowing what is going on inside; before you make assumptions. If you find you really cannot do all these things, perhaps you should consider that you may also be autistic. After all, it is thought that two adults with undiagnosed autism are seen by their GP in the UK every month, and one of them might well be YOU.
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 just made Joe feel very angry. 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.
I spent hours each week reading on the condition and trying to adapt my teaching methods to help these students. I enjoyed the work – I recognised myself in some of them – presumably because I had been through various diagnoses myself over the years.
AUTISM DISCOVERY: CONNECTIONS
I was a keen dancer, competing Strictly Come Dancing style and I was diagnosed with bone cancer in my ribs. With a 50-50 chance of surviving, major surgery, two years of chemotherapy and radiotherapy, losing my hair and being painfully thin, I fought to live. I had things to do, trophies to win, my beloved reading. At school I was teased, even by so called friends. In fact looking back I didn't really have many friends and those I did have were mainly boys (no competition) or people I danced with. I began secondary school with little hair (it had grown back over the summer months) and I thought a new start would be easier. It wasn't. As I continued to fight the cancer and get through the chemotherapy, I had to cope with a new school, bigger children, being bullied, catching up with missed school work. I felt odd, left out, on the outside.
I continued to get through it, concentrated on school work and continued to dance and read at every opportunity. Just as I had the five year clearance, I found myself in more pain and was diagnosed with arthritis in my hip more surgery, more hospitals, more medication, and no dancing for a year as I was on crutches. I couldn't believe it had happened to me again! So I fought – I fought for all those who were ill, for those who had difficulties which no-one else seemed to understand.
Aged 17 I undertook my dance teacher's qualifications and continued to fight for those who couldn't or wouldn't. I loved to teach students with health or disability issues; to help them lead a more normal life. I was also a medical secretary so I worked all day with medicine. I loved hospitals and I loved helping people. I managed to work at the Great Ormond Street Children's Hospital in London for a Paediatric Neurologist – where I was treated for my cancer. I typed letters about autistic children but other than that I didn't know too much about it.
While I was working at Great Ormond Street, I met my now husband and I eventually left and moved back to Kent. Joe was a successful karate instructor. Early in our relationship I realised Joe was quite volatile. He had moods, often became very quiet and occasionally had what I can only describe as unexplained rages. For, what seemed to me, no reason, he would suddenly explode. He never touched or hurt me although the language was often hurtful. I now know it was never aimed at me. I put it all down to his divorce as this is always stressful.
As time went on I learned ways to cope with his moods and after six years and much broken furniture later we married. Over the years the strange things Joe did seemed to increase but in reality I think I just noticed them more. I had gone through part time teacher training by then and I picked up other little quirks or as I call them 'Joeisms'. He would straighten objects and pictures no matter where we were, he would wear short sleeves even in the depths of winter, he would hate my breath near his skin and he would obsess with the colour red every time I wore it. Strangely when we started to date I mostly wore red as it was my favourite colour, so perhaps it made me stand out to him. I now know he has negative reactions to the colour.
We seemed to get on well – I am also very fanatical about the certain things – I am obsessive about lists and planning everything to the finest detail; I notice wonky objects and pictures and light bulbs which are dead.
I began training in karate myself about a year into our relationship. I found I was quite good at it. Early on Joe encouraged me to teach – just a few students at a time. I brought in methods I used in teaching dancing.
I was still restricted – I had more surgery in my late teens, found that I had a heart condition caused by radiotherapy and I had developed osteoarthritis in my hip caused by the earlier illness. Leading up to my black belt grading I developed an unrelated knee condition and I also have a curved spine which causes pain at times. Oh and in case that's not enough I also had skin cancer in the mid nineties related to my original radiotherapy.
I was certainly 'labelled' – I was a 'wreck'. I was the 'sick' one, I was put down by strangers, and by friends for being slim, accused of being anorexic despite the fact that I 'eat for England', made to feel odd by articles in the media constantly telling me to lose a dress size in five days! Why should we all be the same? Why should strangers think they have the right to judge to make comment? I often feel like saying 'why are you fat'?
I continued to teach karate and opened my own club. A local instructor said it would never be a success – a women teaching shock, horror. Another challenge! I have two successful clubs of my own, a successful chain of clubs with Joe, and have been at the day to day helm of NAKMAS, a national martial arts governing body for twenty five years in addition to my other work.
With my teaching I especially loved to teach students who have 'special or medical needs'. I worked out individual programmes which would help them to achieve their goals and to get the most out of their training.I taught full sessions about particular groups of society. I would run a whole class with students sitting in chairs to raise awareness and compassion for those who are in wheelchairs; use blindfolds to teach sight awareness; have discussions with all my students about helping friends or schoolmates who are sick or have difficulties. I thrived on the challenge and I wanted to help others who felt left out.
I had a student, Tom, who was eight. He was a little 'strange', distanced himself from others, asked questions continuously and when he answered questions he took 'forever' giving me more detail than necessary. I had been teaching him for a year when his mum produced a card after a class explaining to me that Tom had the condition called 'Asperger's Syndrome'. I had not heard of it although the card mentioned autism and I had heard about that. Who hasn't watched 'Rainman'?
I did what I always do when something new comes about – I went and brought a book, by Tony Attwood. I read the book within a couple of days and instantly became fascinated. I went back to the class the following week with a new insight to Tom and some ideas of how I could help him gain confidence and get the most out of his karate. A few months later I signed up to a local training day advertised which covered Asperger's awareness.
Tom's mum was so impressed I had bothered to research AS, she told other parents about the class and soon I had a few students with AS and high functioning autism under my wing. I spent hours each week reading on the condition and trying to adapt my teaching methods to help these students. I enjoyed the work – I recognised myself in some of them – presumably because I had been through various diagnoses myself over the years.
I saw increased confidence, and teamwork. I gave lessons on what AS and autism were and educated all the students in ways to help each other, both in the classes and at school and at home.
Tom was a pretty high grade by now and as such was allowed to attend a junior coaching awareness workshop. At these workshops I teach leadership skills, confident speaking in front of the class and ways of explaining techniques in an easy to understand format. He turned out to be a great junior coach – he just loved to explain things in great detail. Unfortunately Tom is no longer one of my students – he found being a senior grade and GCSEs didn't mix and he became too overwhelmed. However we are still in regular contact and he reads papers I have written. Our classes are now attended by many people with forms of autism. Last year the classes were featured in a BBC magazine programme, Inside Out, where a young lad with AS experienced three new things, including a karate class.
A few years ago I completed a Post Graduate Certificate in AS with the National Autistic Society in conjunction with the Sheffield Hallam University. It was on this course I suspected finally that Joe had Asperger's. After some frustrating visits to our GP and lots of discussions with my tutor on the course, we finally found someone to diagnose him officially – this was just two years ago.
This diagnosis literally changed our lives. I no longer felt to blame for the rages, and we both felt more in control of what goes on. The psychologist who eventually gave him the medical diagnosis, initially didn't believe he was AS. He copes with it well, although he is always exhausted as it takes so much effort for him to 'act' the part for his work. Once she got talking to him, she changed her mind, however and decided he was a classic case.
We believe, however, that martial arts have given him the confidence to be successful. He is the Chairman of a large martial arts governing body, runs a chain of successful karate clubs with me, and he has been self employed since he left the army in 1983. He thinks the army saved him as they didn't tease or bully him, but spent time helping him to utilise his strengths and talents. As you can see I am very proud of his achievements.
I think that is what everyone deserves – someone to believe in who they are and someone who is willing to go the extra mile.
Finally the way forward for me – I have recently completed a doctorate in education at the Sheffield Hallam University. My research was all about the autistic voice; both of young autistic people, and of me. It was largely about the informal education learning experience. See publications for my thesis. Despite the fact I live in East Kent, I chose Sheffield Hallam Autism Centre because it concentrates on the person with autism as a whole and not on trying to treat or cure him or her. An ethos I agree with wholeheartedly. (last edited Jan 2014)
I was a keen dancer, competing Strictly Come Dancing style and I was diagnosed with bone cancer in my ribs. With a 50-50 chance of surviving, major surgery, two years of chemotherapy and radiotherapy, losing my hair and being painfully thin, I fought to live. I had things to do, trophies to win, my beloved reading. At school I was teased, even by so called friends. In fact looking back I didn't really have many friends and those I did have were mainly boys (no competition) or people I danced with. I began secondary school with little hair (it had grown back over the summer months) and I thought a new start would be easier. It wasn't. As I continued to fight the cancer and get through the chemotherapy, I had to cope with a new school, bigger children, being bullied, catching up with missed school work. I felt odd, left out, on the outside.
I continued to get through it, concentrated on school work and continued to dance and read at every opportunity. Just as I had the five year clearance, I found myself in more pain and was diagnosed with arthritis in my hip more surgery, more hospitals, more medication, and no dancing for a year as I was on crutches. I couldn't believe it had happened to me again! So I fought – I fought for all those who were ill, for those who had difficulties which no-one else seemed to understand.
Aged 17 I undertook my dance teacher's qualifications and continued to fight for those who couldn't or wouldn't. I loved to teach students with health or disability issues; to help them lead a more normal life. I was also a medical secretary so I worked all day with medicine. I loved hospitals and I loved helping people. I managed to work at the Great Ormond Street Children's Hospital in London for a Paediatric Neurologist – where I was treated for my cancer. I typed letters about autistic children but other than that I didn't know too much about it.
While I was working at Great Ormond Street, I met my now husband and I eventually left and moved back to Kent. Joe was a successful karate instructor. Early in our relationship I realised Joe was quite volatile. He had moods, often became very quiet and occasionally had what I can only describe as unexplained rages. For, what seemed to me, no reason, he would suddenly explode. He never touched or hurt me although the language was often hurtful. I now know it was never aimed at me. I put it all down to his divorce as this is always stressful.
As time went on I learned ways to cope with his moods and after six years and much broken furniture later we married. Over the years the strange things Joe did seemed to increase but in reality I think I just noticed them more. I had gone through part time teacher training by then and I picked up other little quirks or as I call them 'Joeisms'. He would straighten objects and pictures no matter where we were, he would wear short sleeves even in the depths of winter, he would hate my breath near his skin and he would obsess with the colour red every time I wore it. Strangely when we started to date I mostly wore red as it was my favourite colour, so perhaps it made me stand out to him. I now know he has negative reactions to the colour.
We seemed to get on well – I am also very fanatical about the certain things – I am obsessive about lists and planning everything to the finest detail; I notice wonky objects and pictures and light bulbs which are dead.
I began training in karate myself about a year into our relationship. I found I was quite good at it. Early on Joe encouraged me to teach – just a few students at a time. I brought in methods I used in teaching dancing.
I was still restricted – I had more surgery in my late teens, found that I had a heart condition caused by radiotherapy and I had developed osteoarthritis in my hip caused by the earlier illness. Leading up to my black belt grading I developed an unrelated knee condition and I also have a curved spine which causes pain at times. Oh and in case that's not enough I also had skin cancer in the mid nineties related to my original radiotherapy.
I was certainly 'labelled' – I was a 'wreck'. I was the 'sick' one, I was put down by strangers, and by friends for being slim, accused of being anorexic despite the fact that I 'eat for England', made to feel odd by articles in the media constantly telling me to lose a dress size in five days! Why should we all be the same? Why should strangers think they have the right to judge to make comment? I often feel like saying 'why are you fat'?
I continued to teach karate and opened my own club. A local instructor said it would never be a success – a women teaching shock, horror. Another challenge! I have two successful clubs of my own, a successful chain of clubs with Joe, and have been at the day to day helm of NAKMAS, a national martial arts governing body for twenty five years in addition to my other work.
With my teaching I especially loved to teach students who have 'special or medical needs'. I worked out individual programmes which would help them to achieve their goals and to get the most out of their training.I taught full sessions about particular groups of society. I would run a whole class with students sitting in chairs to raise awareness and compassion for those who are in wheelchairs; use blindfolds to teach sight awareness; have discussions with all my students about helping friends or schoolmates who are sick or have difficulties. I thrived on the challenge and I wanted to help others who felt left out.
I had a student, Tom, who was eight. He was a little 'strange', distanced himself from others, asked questions continuously and when he answered questions he took 'forever' giving me more detail than necessary. I had been teaching him for a year when his mum produced a card after a class explaining to me that Tom had the condition called 'Asperger's Syndrome'. I had not heard of it although the card mentioned autism and I had heard about that. Who hasn't watched 'Rainman'?
I did what I always do when something new comes about – I went and brought a book, by Tony Attwood. I read the book within a couple of days and instantly became fascinated. I went back to the class the following week with a new insight to Tom and some ideas of how I could help him gain confidence and get the most out of his karate. A few months later I signed up to a local training day advertised which covered Asperger's awareness.
Tom's mum was so impressed I had bothered to research AS, she told other parents about the class and soon I had a few students with AS and high functioning autism under my wing. I spent hours each week reading on the condition and trying to adapt my teaching methods to help these students. I enjoyed the work – I recognised myself in some of them – presumably because I had been through various diagnoses myself over the years.
I saw increased confidence, and teamwork. I gave lessons on what AS and autism were and educated all the students in ways to help each other, both in the classes and at school and at home.
Tom was a pretty high grade by now and as such was allowed to attend a junior coaching awareness workshop. At these workshops I teach leadership skills, confident speaking in front of the class and ways of explaining techniques in an easy to understand format. He turned out to be a great junior coach – he just loved to explain things in great detail. Unfortunately Tom is no longer one of my students – he found being a senior grade and GCSEs didn't mix and he became too overwhelmed. However we are still in regular contact and he reads papers I have written. Our classes are now attended by many people with forms of autism. Last year the classes were featured in a BBC magazine programme, Inside Out, where a young lad with AS experienced three new things, including a karate class.
A few years ago I completed a Post Graduate Certificate in AS with the National Autistic Society in conjunction with the Sheffield Hallam University. It was on this course I suspected finally that Joe had Asperger's. After some frustrating visits to our GP and lots of discussions with my tutor on the course, we finally found someone to diagnose him officially – this was just two years ago.
This diagnosis literally changed our lives. I no longer felt to blame for the rages, and we both felt more in control of what goes on. The psychologist who eventually gave him the medical diagnosis, initially didn't believe he was AS. He copes with it well, although he is always exhausted as it takes so much effort for him to 'act' the part for his work. Once she got talking to him, she changed her mind, however and decided he was a classic case.
We believe, however, that martial arts have given him the confidence to be successful. He is the Chairman of a large martial arts governing body, runs a chain of successful karate clubs with me, and he has been self employed since he left the army in 1983. He thinks the army saved him as they didn't tease or bully him, but spent time helping him to utilise his strengths and talents. As you can see I am very proud of his achievements.
I think that is what everyone deserves – someone to believe in who they are and someone who is willing to go the extra mile.
Finally the way forward for me – I have recently completed a doctorate in education at the Sheffield Hallam University. My research was all about the autistic voice; both of young autistic people, and of me. It was largely about the informal education learning experience. See publications for my thesis. Despite the fact I live in East Kent, I chose Sheffield Hallam Autism Centre because it concentrates on the person with autism as a whole and not on trying to treat or cure him or her. An ethos I agree with wholeheartedly. (last edited Jan 2014)
My Joe really is an inspiration.
MY HUSBAND: 'UNIQUE' BECOMES 'ASPERGER'S'
I have been with my husband for over twenty years – married for fourteen and a half. I am his 'second wife' as, even now, he tells people. He was married to the 'first wife' for a little over four years. My husband – Joe, was recently asked to be a keynote speaker for the 'I Exist Campaign' launch for the National Autistic Society Northern Ireland. We were both invited to Belfast and driven two hours West to Enniskillen for the launch. He was berated by several people for referring to me as his 'second wife'. I doubt that it will stop him – after all it's a fact – I am!
Joe deals in facts and cannot understand the point of fiction. He sees nothing wrong with saying something if it is a fact – no matter if it upsets or hurts someone. He doesn't mean to upset someone but it seems to just happen and he often can't control it. Of course this is usual – Joe has Asperger's Syndrome. He has only known officially for eight months, although I realised some three years ago now. I was studying for a Post Graduate Certificate in Asperger's Syndrome, run by the
Sheffield Hallam University in conjunction with the NAS. It was the second week of the course and a particular lecture on sensory issues, which set off a light bulb in my head. 'Takes his shoes and socks off, and often his trousers, as soon as he gets home' - yes; 'wears clothing inappropriate for the weather' – short sleeves all year round; sensitive to certain colours – thinks I wear red all the time although I now have only two red items in my wardrobe; 'fussy about the feel of clothes, bed linen, cushions etc' – yes; 'dislikes being touched lightly but enjoys hard touch or scratching' – yes. The list went on and I kept saying 'that's Joe'. Coupled with the tempers, often pedantic and repetitive speech, constantly moving things to make them symmetrical, obsessively cleaning the kitchen and bathroom after use, and a major dislike of any family occasions which require a party; my feeling was ' oh my goodness, my husband has Asperger's and no-one has ever realised. I spoke to a fellow student over the break and told her my thoughts - she too had a husband with Asperger's – she agreed with me. What to do?
I was a little ashamed. I had been teaching children with Asperger's for six years prior to this revelation, had read a lot about it, but had not put the two together. I suppose looking back, I had flashes of 'maybe' especially with moving objects around and his dislike of social functions – also his talking constantly about his favourite subjects to anyone he met. He often asks people he has met to describe him in three words – I always used one word – 'Unique'.
Following the completion of my course, I spoke to my tutor about Joe. He was very experienced with adults in particular with Asperger's and he gave me some names of specialists who may be able to help with a diagnosis. After Joe got over the initial shock of my thoughts, we did a test at the back of one of my books with alarming results, he did his own research, again he needed the facts, and came to terms with the possibility, he spoke to his GP about getting a diagnosis. He came home from that visit very angry as his GP, who he has never been keen on anyway, told him he didn't have Asperger's and even he did why would he want to know anyway? He said it was rare for adults to be diagnosed with Asperger's. It took another two years to get someone to diagnose him. Although the process was very emotional for him, he went through many stages of acceptance: it has been literally 'a new lease of life' for him. He finally understands his life so far, why his temper has been so bad and why seemingly silly triggers set him off; why his temper got him into trouble in his younger days; why his 'first wife' wound him up so much; why he didn't have many friends at school and why his few friends are so special to him; why he hates crowded places, loud noise, and the colour red; and why his music, love of history and Cromwell, and collections of sugar-shakers and keys are so important to him.
From my point of view, I now know it has not always been my fault – mainly that I am not to blame for saying something in a particular tone which sets him off, or he feels the need to leave the house and not come back for a couple of days, or that after a 'temper' he won't talk to me for several hours. It is Asperger's. He needs to unwind, unload, and get back in a calm place, before he feels able to communicate again safely.
Am I upset that my husband has Asperger's? That he is autistic? – not at all. He is still the 'unique' man I married. I used to call the unusual things 'Joe-isms'. I consider that he is very special and I feel honoured that I have been able to help him 'find himself'. I sit here proudly wearing my 'I love my husband with Asperger's' badge he gave me this morning.
Joe's oldest and best friend, Bob, died just before Joe was diagnosed, after a relatively short but debilitating illness. I am very sure that Bob also had Asperger's. They had a bond although they often drove each other mad and didn't talk for sometimes months. Joe has been very devastated and remembers his friend every day that passes. He has lost three more very good friends in his life – one a primary school friend who lost contact with him, another over a decade ago, a singer he always idolised since childhood, and became very good personal friends with, and a colleague and in the end very good friend, who committed suicide a year ago. Joe will never get over these losses. All I can hope is that I can help him cope with them, and move forwards to a place where he accepts them and understands that he is on this Earth to help others and make a difference; and that these friends have helped to shape him into the special person he is now.
Joe is a wonderful karate instructor – children adore him, adults respect him. He tries to identify with students with Asperger's and other ASDs and help them to accept themselves. He also clashes spectacularly with other students. He has been, and is, the Chairman of a national martial arts governing body since its inception in 1992, President and Chairman of Karate England in its founding years, and ran another martial arts organisation (with the 'first wife') for some years.
He is also an active Freemason, something he is very proud of. He joined because of his love of tradition and history, and his fellow masons have an enormous respect for his attitude and conduct, his contribution to charity, and his willingness to help anybody he can.
The proudest time of my life with Joe so far, second to our wedding day, has been watching him in Northern Ireland last month. He did a great job at the 'I Exist Campaign' both on the stage while he was speaking, and after the speeches. He worked the tables and spoke to practically everyone there – he offered support to fellow autistic adults; revelation to the experts; advice and stories to everyone. The evening before, he had taught his karate, which again is unique, to a class of autistic children and their instructors. By the end of the evening they were all great friends. Just before we flew back to England, we visited a child who should have been at the class but was unable to attend. Joe spoke with him for a considerable amount of time, did a bit of karate, and gave him some advice about dealing with angry thoughts and actions.
My Joe really is an inspiration. I am ashamed to admit when he told me about the conference I was jealous. I was the expert, I had the qualifications, working with autistic children was the love of my life – I was about to start a doctorate specialising in ASDs. He was taking over my specialist area. Seeing him there changed my mind completely. It would be such a waste not to use his unique skills and talent with people, which he possesses despite his Asperger's. We are going to work together to make a difference together. After all, it seems to me, that we met and became a couple for exactly that reason. Apart from love, what other explanation is there? (written 2009)
I have been with my husband for over twenty years – married for fourteen and a half. I am his 'second wife' as, even now, he tells people. He was married to the 'first wife' for a little over four years. My husband – Joe, was recently asked to be a keynote speaker for the 'I Exist Campaign' launch for the National Autistic Society Northern Ireland. We were both invited to Belfast and driven two hours West to Enniskillen for the launch. He was berated by several people for referring to me as his 'second wife'. I doubt that it will stop him – after all it's a fact – I am!
Joe deals in facts and cannot understand the point of fiction. He sees nothing wrong with saying something if it is a fact – no matter if it upsets or hurts someone. He doesn't mean to upset someone but it seems to just happen and he often can't control it. Of course this is usual – Joe has Asperger's Syndrome. He has only known officially for eight months, although I realised some three years ago now. I was studying for a Post Graduate Certificate in Asperger's Syndrome, run by the
Sheffield Hallam University in conjunction with the NAS. It was the second week of the course and a particular lecture on sensory issues, which set off a light bulb in my head. 'Takes his shoes and socks off, and often his trousers, as soon as he gets home' - yes; 'wears clothing inappropriate for the weather' – short sleeves all year round; sensitive to certain colours – thinks I wear red all the time although I now have only two red items in my wardrobe; 'fussy about the feel of clothes, bed linen, cushions etc' – yes; 'dislikes being touched lightly but enjoys hard touch or scratching' – yes. The list went on and I kept saying 'that's Joe'. Coupled with the tempers, often pedantic and repetitive speech, constantly moving things to make them symmetrical, obsessively cleaning the kitchen and bathroom after use, and a major dislike of any family occasions which require a party; my feeling was ' oh my goodness, my husband has Asperger's and no-one has ever realised. I spoke to a fellow student over the break and told her my thoughts - she too had a husband with Asperger's – she agreed with me. What to do?
I was a little ashamed. I had been teaching children with Asperger's for six years prior to this revelation, had read a lot about it, but had not put the two together. I suppose looking back, I had flashes of 'maybe' especially with moving objects around and his dislike of social functions – also his talking constantly about his favourite subjects to anyone he met. He often asks people he has met to describe him in three words – I always used one word – 'Unique'.
Following the completion of my course, I spoke to my tutor about Joe. He was very experienced with adults in particular with Asperger's and he gave me some names of specialists who may be able to help with a diagnosis. After Joe got over the initial shock of my thoughts, we did a test at the back of one of my books with alarming results, he did his own research, again he needed the facts, and came to terms with the possibility, he spoke to his GP about getting a diagnosis. He came home from that visit very angry as his GP, who he has never been keen on anyway, told him he didn't have Asperger's and even he did why would he want to know anyway? He said it was rare for adults to be diagnosed with Asperger's. It took another two years to get someone to diagnose him. Although the process was very emotional for him, he went through many stages of acceptance: it has been literally 'a new lease of life' for him. He finally understands his life so far, why his temper has been so bad and why seemingly silly triggers set him off; why his temper got him into trouble in his younger days; why his 'first wife' wound him up so much; why he didn't have many friends at school and why his few friends are so special to him; why he hates crowded places, loud noise, and the colour red; and why his music, love of history and Cromwell, and collections of sugar-shakers and keys are so important to him.
From my point of view, I now know it has not always been my fault – mainly that I am not to blame for saying something in a particular tone which sets him off, or he feels the need to leave the house and not come back for a couple of days, or that after a 'temper' he won't talk to me for several hours. It is Asperger's. He needs to unwind, unload, and get back in a calm place, before he feels able to communicate again safely.
Am I upset that my husband has Asperger's? That he is autistic? – not at all. He is still the 'unique' man I married. I used to call the unusual things 'Joe-isms'. I consider that he is very special and I feel honoured that I have been able to help him 'find himself'. I sit here proudly wearing my 'I love my husband with Asperger's' badge he gave me this morning.
Joe's oldest and best friend, Bob, died just before Joe was diagnosed, after a relatively short but debilitating illness. I am very sure that Bob also had Asperger's. They had a bond although they often drove each other mad and didn't talk for sometimes months. Joe has been very devastated and remembers his friend every day that passes. He has lost three more very good friends in his life – one a primary school friend who lost contact with him, another over a decade ago, a singer he always idolised since childhood, and became very good personal friends with, and a colleague and in the end very good friend, who committed suicide a year ago. Joe will never get over these losses. All I can hope is that I can help him cope with them, and move forwards to a place where he accepts them and understands that he is on this Earth to help others and make a difference; and that these friends have helped to shape him into the special person he is now.
Joe is a wonderful karate instructor – children adore him, adults respect him. He tries to identify with students with Asperger's and other ASDs and help them to accept themselves. He also clashes spectacularly with other students. He has been, and is, the Chairman of a national martial arts governing body since its inception in 1992, President and Chairman of Karate England in its founding years, and ran another martial arts organisation (with the 'first wife') for some years.
He is also an active Freemason, something he is very proud of. He joined because of his love of tradition and history, and his fellow masons have an enormous respect for his attitude and conduct, his contribution to charity, and his willingness to help anybody he can.
The proudest time of my life with Joe so far, second to our wedding day, has been watching him in Northern Ireland last month. He did a great job at the 'I Exist Campaign' both on the stage while he was speaking, and after the speeches. He worked the tables and spoke to practically everyone there – he offered support to fellow autistic adults; revelation to the experts; advice and stories to everyone. The evening before, he had taught his karate, which again is unique, to a class of autistic children and their instructors. By the end of the evening they were all great friends. Just before we flew back to England, we visited a child who should have been at the class but was unable to attend. Joe spoke with him for a considerable amount of time, did a bit of karate, and gave him some advice about dealing with angry thoughts and actions.
My Joe really is an inspiration. I am ashamed to admit when he told me about the conference I was jealous. I was the expert, I had the qualifications, working with autistic children was the love of my life – I was about to start a doctorate specialising in ASDs. He was taking over my specialist area. Seeing him there changed my mind completely. It would be such a waste not to use his unique skills and talent with people, which he possesses despite his Asperger's. We are going to work together to make a difference together. After all, it seems to me, that we met and became a couple for exactly that reason. Apart from love, what other explanation is there? (written 2009)
Luke Jackson (author of Freaks, Geeks and Asperger's Syndrome, 2002) agrees 'the fact that it is so structured and predictable makes it the perfect form of exercise for anyone on the autistic spectrum'.
MARTIAL ARTS HELP STUDENTS WITH ASPERGER'S / AUTISM
Martial arts are popular sports, more commonly known in the industry as arts. There are many martial arts including the arts of taekwondo, karate, tai chi and kung fu to name a few. These disciplines and others, are further split into a variety of styles. 'Taekwondo has proven to be another great intervention for many kids with Asperger's Syndrome' (Willey, 2003).
Martial art training is very consistent and regular classes are likely to be similar in content, satisfying the child with Asperger's need for routine and predictability. There is a ranking system of belts a child can achieved and techniques become more difficult with each belt. Basic training is always practised however, even when the student achieves the highest grades. This can be repetitive and can be a bore to many children, but to the child with Asperger's, this repetition can be comforting. Luke Jackson (author of Freaks, Geeks and Asperger's Syndrome, 2002) agrees 'the fact that it is so structured and predictable makes it the perfect form of exercise for anyone on the autistic spectrum'.
The structure of a lesson is usually similar in that there is always a warm up of about 10-15 minutes, the basics, maybe some group work, possibly some sparring, and a short cool down or discussion session. There are variations to this, but for instructors experienced in teaching students with ASDs, if a major change is planned, students are told in advance. For example, if a different hall is to be used, students on the spectrum are invited to visit the hall and become familiar in advance of the class.
I found that over the years of teaching children with Asperger's, when the class is due to learn new concepts or moves, it is most effective to pair them up with empathetic higher graded peers so that the student can be taught on a one-to-one basis, and then join the main class when he or she feels more confident. Watching other children execute the moves may also be an effective way to learn. This is relatively easy in martial arts as most of the work is taught in sections, eg, blocks or kicks, and then repeated over and over until the students are competent. With these basic moves, the child with Asperger's feels comfortable because there is little need for any physical contact or interaction.
For a child with Asperger's, who often experiences 'lax joints, immature grasp, slowed pace of movements and problems with manual dexterity' (Kirby 2002, cited in Groft and Black 2003), a martial art such as karate or taekwondo can be very beneficial. The kicking skills of these arts, and others besides, are an excellent way to develop balance, co-ordination and flexibility in all children. Groups of movements known as 'kata' or 'forms'; and the various stances needed, develop strength, and also the ability to move the body in diverse ways. It can also help with the left versus right issue many children have.
There are some who may express concern about a child with an ASD practising martial arts. The tantrums which can occur during times of tiredness, frustration or anger could mean that the child will strike out with taught moves. While it is true many techniques can be dangerous, these would take many years to perfect with specific knowledge, and more dangerous techniques are never taught to children, with autism, or otherwise. All children who are taught martial arts are constantly reminded that if the arts are misused or abused, the child will be withdrawn from training and there may be serious legal ramifications. In my experience, students with Asperger's, love their classes, and would try hard not to put their training in jeopardy. I teach my students, more so for those on the spectrum, simple breathing exercises which they can use wherever they happen to be, if they feel tension or anger coming on.
Another important part of martial arts training is that students follow strict rules within the class. The students with Asperger's like this, but can get upset if they think someone else is not following the rules, and I have known students to loudly object to another's behaviour if they think he is breaking a rule. Sometimes I find I have to explain certain exceptions to some rules, in case an incident causes a 'tantrum' or fit of anger. An example of this could be sparring, which for children should be no contact, although occasionally someone blocking a kick for instance, may cause slight contact.
Often I will use the skills of a student with Asperger's to make him feel part of the class. For example, a student who excels in numbers, maybe asked to count the students at the start and at the end of a class, in case of a fire alarm or other emergency. He knows it is an important job and never has to be reminded to do it as it is his job.
As with any teacher, I try to always set a good example to my students and I find this is especially important for students with Asperger's. I try to speak calmly, clearly and rarely shout. Much of my banter is predictable – I use the same old jokes, comparisons and rhymes to illustrate moves and Japanese names. Many students moan about them but children with Asperger's appreciate it as it helps them remember. I am polite and courteous to my students and expect the same to me and to each other and any other adults or parents. I wear the correct clothes, have short nails and my hair off my face. Respect is paramount in the classes. This is an essential social skill and I feel it is my duty to teach it. If anyone is being bullied either in the class or outside of it, they know they can tell me and I will deal with it immediately.
Finally, back to the student I started with all those years ago. Tom is a true example of what martial arts can do for a child with Asperger's. I promote teamwork in classes and know that some children with Asperger's struggle with this. I always choose groups, and never allow the children to do this. I am careful about which children work together and each group always have a higher graded student (a trained junior coach) in control of it. Tom has been one of the best junior coaches in the class. He is patient with other children, explains and demonstrates clearly with good detail, and enjoys working in small groups. He can get carried away with the detail and I sometimes have to move him along or he would still be there an hour later; but the other students appreciate his ability to get the message across. This is a huge achievement for Tom. He is more confident, has better social skills, looks people in the eye, and has improved his physical movement. I am very proud of him. He inspired me to teach others with Asperger's in the beginning and I have loved every minute of it. I especially love seeing students 'flourish' as they learn new skills both martial arts and personally; and I have myself personally learnt so much.
NB: This was originally written in 2008; and has been succeeded by my book Autism and Martial Arts (2015). The diagnosis of Asperger's Syndrome is no longer given; individuals' diagnoses tend to fall under the overall banner of being on the 'autism spectrum'.
Martial arts are popular sports, more commonly known in the industry as arts. There are many martial arts including the arts of taekwondo, karate, tai chi and kung fu to name a few. These disciplines and others, are further split into a variety of styles. 'Taekwondo has proven to be another great intervention for many kids with Asperger's Syndrome' (Willey, 2003).
Martial art training is very consistent and regular classes are likely to be similar in content, satisfying the child with Asperger's need for routine and predictability. There is a ranking system of belts a child can achieved and techniques become more difficult with each belt. Basic training is always practised however, even when the student achieves the highest grades. This can be repetitive and can be a bore to many children, but to the child with Asperger's, this repetition can be comforting. Luke Jackson (author of Freaks, Geeks and Asperger's Syndrome, 2002) agrees 'the fact that it is so structured and predictable makes it the perfect form of exercise for anyone on the autistic spectrum'.
The structure of a lesson is usually similar in that there is always a warm up of about 10-15 minutes, the basics, maybe some group work, possibly some sparring, and a short cool down or discussion session. There are variations to this, but for instructors experienced in teaching students with ASDs, if a major change is planned, students are told in advance. For example, if a different hall is to be used, students on the spectrum are invited to visit the hall and become familiar in advance of the class.
I found that over the years of teaching children with Asperger's, when the class is due to learn new concepts or moves, it is most effective to pair them up with empathetic higher graded peers so that the student can be taught on a one-to-one basis, and then join the main class when he or she feels more confident. Watching other children execute the moves may also be an effective way to learn. This is relatively easy in martial arts as most of the work is taught in sections, eg, blocks or kicks, and then repeated over and over until the students are competent. With these basic moves, the child with Asperger's feels comfortable because there is little need for any physical contact or interaction.
For a child with Asperger's, who often experiences 'lax joints, immature grasp, slowed pace of movements and problems with manual dexterity' (Kirby 2002, cited in Groft and Black 2003), a martial art such as karate or taekwondo can be very beneficial. The kicking skills of these arts, and others besides, are an excellent way to develop balance, co-ordination and flexibility in all children. Groups of movements known as 'kata' or 'forms'; and the various stances needed, develop strength, and also the ability to move the body in diverse ways. It can also help with the left versus right issue many children have.
There are some who may express concern about a child with an ASD practising martial arts. The tantrums which can occur during times of tiredness, frustration or anger could mean that the child will strike out with taught moves. While it is true many techniques can be dangerous, these would take many years to perfect with specific knowledge, and more dangerous techniques are never taught to children, with autism, or otherwise. All children who are taught martial arts are constantly reminded that if the arts are misused or abused, the child will be withdrawn from training and there may be serious legal ramifications. In my experience, students with Asperger's, love their classes, and would try hard not to put their training in jeopardy. I teach my students, more so for those on the spectrum, simple breathing exercises which they can use wherever they happen to be, if they feel tension or anger coming on.
Another important part of martial arts training is that students follow strict rules within the class. The students with Asperger's like this, but can get upset if they think someone else is not following the rules, and I have known students to loudly object to another's behaviour if they think he is breaking a rule. Sometimes I find I have to explain certain exceptions to some rules, in case an incident causes a 'tantrum' or fit of anger. An example of this could be sparring, which for children should be no contact, although occasionally someone blocking a kick for instance, may cause slight contact.
Often I will use the skills of a student with Asperger's to make him feel part of the class. For example, a student who excels in numbers, maybe asked to count the students at the start and at the end of a class, in case of a fire alarm or other emergency. He knows it is an important job and never has to be reminded to do it as it is his job.
As with any teacher, I try to always set a good example to my students and I find this is especially important for students with Asperger's. I try to speak calmly, clearly and rarely shout. Much of my banter is predictable – I use the same old jokes, comparisons and rhymes to illustrate moves and Japanese names. Many students moan about them but children with Asperger's appreciate it as it helps them remember. I am polite and courteous to my students and expect the same to me and to each other and any other adults or parents. I wear the correct clothes, have short nails and my hair off my face. Respect is paramount in the classes. This is an essential social skill and I feel it is my duty to teach it. If anyone is being bullied either in the class or outside of it, they know they can tell me and I will deal with it immediately.
Finally, back to the student I started with all those years ago. Tom is a true example of what martial arts can do for a child with Asperger's. I promote teamwork in classes and know that some children with Asperger's struggle with this. I always choose groups, and never allow the children to do this. I am careful about which children work together and each group always have a higher graded student (a trained junior coach) in control of it. Tom has been one of the best junior coaches in the class. He is patient with other children, explains and demonstrates clearly with good detail, and enjoys working in small groups. He can get carried away with the detail and I sometimes have to move him along or he would still be there an hour later; but the other students appreciate his ability to get the message across. This is a huge achievement for Tom. He is more confident, has better social skills, looks people in the eye, and has improved his physical movement. I am very proud of him. He inspired me to teach others with Asperger's in the beginning and I have loved every minute of it. I especially love seeing students 'flourish' as they learn new skills both martial arts and personally; and I have myself personally learnt so much.
NB: This was originally written in 2008; and has been succeeded by my book Autism and Martial Arts (2015). The diagnosis of Asperger's Syndrome is no longer given; individuals' diagnoses tend to fall under the overall banner of being on the 'autism spectrum'.
Language may be taken literally so think before you speak.
ADVICE FOR TEACHING SPORT AND PHYSICAL ACTIVITIES
From my experience being aware of the language used is very important when teaching anyone on the autism spectrum. It can be a good idea to get a student's attention by using his name before an instruction or question. Otherwise you may be ignored as he will not realise you are addressing him. Be calm, try not to raise your voice or shout, and speak clearly and slowly. You may need to be patient; an immediate response is not always going to happen. Students with autism often find too much information or sudden questions may take longer to process than others might. Hurrying them will only cause panic and anxiety.
Language may be taken literally so think before you speak. Telling them to 'jump to it' for example may simply result in them jumping.
They are not mocking you, but simply following instructions. Idioms and metaphors are easily misinterpreted or may cause confusion. Jokes and sarcasm may be taken the wrong way or not understood.
For children especially, using images or pictures to describe certain things may help them to understand and to remember. The use of routine and perhaps a pictorial or visual planner of what will happen during a lesson, course, examination etc may help to simplify or explain things.
When a person with autism is faced with a different or new situation, he may become particularly anxious or upset. Your being aware of this will make things easier. For example, if a class is to be run in a different venue, the person may be introduced to the venue outside of class time, when it is empty or quieter. When a student first comes to a class, it is advisable for him or her to bring someone along who is familiar; parents, a friend, sister etc. Seeing photos of the venue and class is another way to introduce the student to the situation. These activities may need to be repeated several times before the student is comfortable.
If a new child comes to a class, I always introduce him or her to another student, usually of a senior grade, and approximately the same age. That student becomes a familiar face and someone to talk to, ask questions of and support at times of anxiety.
There are pros and cons of the other students in the class knowing that someone in the group has autism. This decision rests with the parents or the student, but for my own classes, because I teach so many students with autism, my other students are autism aware and know that many of their peers have autism, but not always who exactly. Many students who learn martial arts, are there because they are being bullied outside the class, and therefore we do lots of training concerning dealing with bullies and why it is important not to be a bully. Other sports and activities may not be so aware so it is important to let all students know that bullying will not be tolerated. Students with autism often attend these kinds of activities to gain confidence.
It is useful to give a student with autism a 'buddy' in the class – someone who will be a support, a friendly face, someone to 'hang around with', someone to ask questions or just explain the rules. It is especially important that the student with autism is taught rules of safety – and this may be followed up in writing or in pictures depending on the student's age. It may be necessary to repeat this regularly.
It is important that you talk to the student with autism or his or her parent/guardian to find out what kind of behaviours you should expect.
Issues of hyper (over) or hypo (under) sensitivities may affect his or her training and it is essential that you know how the student may be affected and what to expect.
Sensory overload is also something to be aware of. Too much noise, lots of instructions, others running about, bright lights, etc may cause overload. From personal experience I know that sensory overload can result in the person 'shutting down' and 'zoning out', or in some circumstances, can result in sudden rage. There should be a facility for the student to go somewhere which is quiet and calm until the feeling has passed.
Teaching students with autism spectrum disorders is a challenge, and needs patience and a special effort, but it can be so rewarding to see these students gain confidence, learn new skills and interact with others. Don't give up.
From my experience being aware of the language used is very important when teaching anyone on the autism spectrum. It can be a good idea to get a student's attention by using his name before an instruction or question. Otherwise you may be ignored as he will not realise you are addressing him. Be calm, try not to raise your voice or shout, and speak clearly and slowly. You may need to be patient; an immediate response is not always going to happen. Students with autism often find too much information or sudden questions may take longer to process than others might. Hurrying them will only cause panic and anxiety.
Language may be taken literally so think before you speak. Telling them to 'jump to it' for example may simply result in them jumping.
They are not mocking you, but simply following instructions. Idioms and metaphors are easily misinterpreted or may cause confusion. Jokes and sarcasm may be taken the wrong way or not understood.
For children especially, using images or pictures to describe certain things may help them to understand and to remember. The use of routine and perhaps a pictorial or visual planner of what will happen during a lesson, course, examination etc may help to simplify or explain things.
When a person with autism is faced with a different or new situation, he may become particularly anxious or upset. Your being aware of this will make things easier. For example, if a class is to be run in a different venue, the person may be introduced to the venue outside of class time, when it is empty or quieter. When a student first comes to a class, it is advisable for him or her to bring someone along who is familiar; parents, a friend, sister etc. Seeing photos of the venue and class is another way to introduce the student to the situation. These activities may need to be repeated several times before the student is comfortable.
If a new child comes to a class, I always introduce him or her to another student, usually of a senior grade, and approximately the same age. That student becomes a familiar face and someone to talk to, ask questions of and support at times of anxiety.
There are pros and cons of the other students in the class knowing that someone in the group has autism. This decision rests with the parents or the student, but for my own classes, because I teach so many students with autism, my other students are autism aware and know that many of their peers have autism, but not always who exactly. Many students who learn martial arts, are there because they are being bullied outside the class, and therefore we do lots of training concerning dealing with bullies and why it is important not to be a bully. Other sports and activities may not be so aware so it is important to let all students know that bullying will not be tolerated. Students with autism often attend these kinds of activities to gain confidence.
It is useful to give a student with autism a 'buddy' in the class – someone who will be a support, a friendly face, someone to 'hang around with', someone to ask questions or just explain the rules. It is especially important that the student with autism is taught rules of safety – and this may be followed up in writing or in pictures depending on the student's age. It may be necessary to repeat this regularly.
It is important that you talk to the student with autism or his or her parent/guardian to find out what kind of behaviours you should expect.
Issues of hyper (over) or hypo (under) sensitivities may affect his or her training and it is essential that you know how the student may be affected and what to expect.
Sensory overload is also something to be aware of. Too much noise, lots of instructions, others running about, bright lights, etc may cause overload. From personal experience I know that sensory overload can result in the person 'shutting down' and 'zoning out', or in some circumstances, can result in sudden rage. There should be a facility for the student to go somewhere which is quiet and calm until the feeling has passed.
Teaching students with autism spectrum disorders is a challenge, and needs patience and a special effort, but it can be so rewarding to see these students gain confidence, learn new skills and interact with others. Don't give up.
Autism is not an excuse; it is simply a difference in the way the brain is wired, which cannot be altered.
AUTISM AND FREEMASONRY
You may wonder why the subject of autism is particularly relevant to freemasonry, but it is possible that someone in your own lodge is autistic. 1 in 100 people in the UK are on the autism spectrum and that is just the number who has been diagnosed. The diagnosis for women is even lower as it seems they are able to cover their traits or at least cope with them more ably (in public at least).
I should add that I am a freemason's wife. My husband, Joe, has been through the Master's Chair and after a short break following that year has returned to active freemasonry recently. Joe and I have both been diagnosed with Asperger's syndrome.
The autism spectrum is broad with Kanner's or 'classic' autism traditionally at one end, which can include either a delay in or a lack of language development and often continuing learning difficulties; and Asperger's syndrome at the other end. This is an intellectually high functioning form of autism. In between are varying degrees of autism. All presentations of autism share two common features: social communication difficulties, and narrow interests and repetitive actions. Although this positioning on the spectrum indicates that perhaps some autistic conditions are milder than others, this is not necessarily the case. Whether a person has classic autism or Asperger's, there are good days and there are bad days, some very bad. These can also switch quickly where a person is thriving at one point in the day, and then within seconds, it can change and the same person can suddenly feel depressed, angry, or overwhelmed. Recently a clinical diagnosis given has been changed to simply being on the 'autism spectrum'. Autism can also be accompanied by other conditions including dyspraxia, depression, severe anxiety, and attention deficit disorder (ADD).
Rather than write too much generally about the characteristics of autism, which can be found on many websites (I would suggest www.autism.org.uk in the first instance) and in a vast array of literature, I shall briefly attempt to reveal how an autistic person may be affected within freemasonry.
Joe had a desire to join freemasonry, because one of his obsessive or narrow interests is history and tradition. He absorbs facts like a sponge. He spent many years studying freemasonry and its traditions before contacting Grand Lodge and consequently being introduced to his local Lodge. He knows more facts about freemasonry than many more experienced freemasons (or brethren as they are called by those 'in the know'). While some may think this is strange, or even try to belittle him for it, others admire him for his obvious passion and commitment.
He loves the tradition of ritual and the ways it is performed, which I understand he does with military precision. He has been complimented on this often. He dislikes sloppiness because if there are correct ways to do things, autists believe they should be followed exactly. They thrive on correctness and routine. Paradoxically this is where some aspects of freemasonry can be more challenging.
Learning needs to be systematic. Joe has to learn ritual, one part at a time. Once he has learned a part, he can then move on to the next part, and then the next part. It is difficult for him to move around haphazardly before he has learned the words properly. He will just get confused, panic and then likely miss lodge meetings or practises because he feels overwhelmed.
If there is 'unrest' or 'incident' at an event it is likely to affect an autistic individual severely. They tend to be either hypo or hyper sensitive and react to situations quite differently, often seen as dramatically, to non autistic individuals. Autists may find interpreting others' comments or reactions difficult and can often misread situations. They can be easily upset especially when they are feeling tired, stressed or panicked by situations. Social occasions can be overwhelming and you will often find an autistic person sitting alone, calming himself down. Joe uses a tactic to get over this discomfort, which may be considered unusual for the autistic individual. He approaches everyone as quickly as he can and speaks to them before they speak to him. This way he is in control of the situation, what he says, how he needs to react. It is a way to reduce feeling cornered and under pressure in social situations. As he is a leader, within top management, within his professional career, this tactic has worked well for him and enables him to network superbly. I, on the other hand, do the complete opposite given the chance unless I know people, in which case I imitate Joe's methods if the situation allows me to do so. Imitation is something autistic individuals do a lot – it is their way to learn how to behave in social situations.
As a freemason's wife I struggled when Joe first entered the Lodge. I had to attend lots of social events with people I mostly did not know. The wives of Joe's proposer and seconder, were told to look after me. They did, and they continued to do so throughout most of Joe's masonic career thus far.
At this point it is worth mentioning that Joe's masonic break after his Master's year was forced pretty much for reasons which caused him to become overwhelmed with events which spiralled out of his control, through no fault of his own. We had a fantastic Master's year, running many events both large and small, and managing to raise £5000 for a local charity supporting children with disabilities and their families. We had tremendous support from his own Lodge, and from some other Lodges within Kent.
At the end of the year we were both physically, mentally and emotionally exhausted and a break was desperately needed by us both. One such event is tiring enough for anyone, a chain of events in just a few months experienced by a couple with autism was a challenge akin to climbing Everest twice in a month. To add to the pressure I was also in the throes of completing my doctorate in education.
Despite the immense pressures we loved his Master's year and I loved the dressing up and organising all of the events. Being a dancer and having been part of the competitive world for so long, Ladies Night was made for me. As the organiser, my social phobias were lessened as I could act a part; be another person.
Autistic individuals can sometimes seem rude and seemingly ignorant. Often there is a lot going on, lots of noise, lots of talking, lots of information, and autistics become overwhelmed easily. One way of overcoming this, if it is not possible to leave the situation and find a quiet space, is by 'switching out' and appearing to be ignoring what is going on. It can be a way to avoid sudden rage or episode of anxiety. Be patient, they will eventually 'come back'.
You will also find an autist is very exacting about detail; perhaps the directions to a lodge, the invitation to a lodge meeting, what he or she should wear. This is not just them being pedants, but the detail is essential for them to process the situation so that they can accept it as fact. They will get anxious about travelling, about being told one thing and then it being changed at the last minute.
It is important that you accept your fellow brother for the way he is. Autism is not an excuse; it is simply a difference in the way the brain is wired, which cannot be altered. Most importantly, be supportive and listen to them when they explain what you can do to help make their masonic life easier and more enjoyable. (written 2016)
You may wonder why the subject of autism is particularly relevant to freemasonry, but it is possible that someone in your own lodge is autistic. 1 in 100 people in the UK are on the autism spectrum and that is just the number who has been diagnosed. The diagnosis for women is even lower as it seems they are able to cover their traits or at least cope with them more ably (in public at least).
I should add that I am a freemason's wife. My husband, Joe, has been through the Master's Chair and after a short break following that year has returned to active freemasonry recently. Joe and I have both been diagnosed with Asperger's syndrome.
The autism spectrum is broad with Kanner's or 'classic' autism traditionally at one end, which can include either a delay in or a lack of language development and often continuing learning difficulties; and Asperger's syndrome at the other end. This is an intellectually high functioning form of autism. In between are varying degrees of autism. All presentations of autism share two common features: social communication difficulties, and narrow interests and repetitive actions. Although this positioning on the spectrum indicates that perhaps some autistic conditions are milder than others, this is not necessarily the case. Whether a person has classic autism or Asperger's, there are good days and there are bad days, some very bad. These can also switch quickly where a person is thriving at one point in the day, and then within seconds, it can change and the same person can suddenly feel depressed, angry, or overwhelmed. Recently a clinical diagnosis given has been changed to simply being on the 'autism spectrum'. Autism can also be accompanied by other conditions including dyspraxia, depression, severe anxiety, and attention deficit disorder (ADD).
Rather than write too much generally about the characteristics of autism, which can be found on many websites (I would suggest www.autism.org.uk in the first instance) and in a vast array of literature, I shall briefly attempt to reveal how an autistic person may be affected within freemasonry.
Joe had a desire to join freemasonry, because one of his obsessive or narrow interests is history and tradition. He absorbs facts like a sponge. He spent many years studying freemasonry and its traditions before contacting Grand Lodge and consequently being introduced to his local Lodge. He knows more facts about freemasonry than many more experienced freemasons (or brethren as they are called by those 'in the know'). While some may think this is strange, or even try to belittle him for it, others admire him for his obvious passion and commitment.
He loves the tradition of ritual and the ways it is performed, which I understand he does with military precision. He has been complimented on this often. He dislikes sloppiness because if there are correct ways to do things, autists believe they should be followed exactly. They thrive on correctness and routine. Paradoxically this is where some aspects of freemasonry can be more challenging.
Learning needs to be systematic. Joe has to learn ritual, one part at a time. Once he has learned a part, he can then move on to the next part, and then the next part. It is difficult for him to move around haphazardly before he has learned the words properly. He will just get confused, panic and then likely miss lodge meetings or practises because he feels overwhelmed.
If there is 'unrest' or 'incident' at an event it is likely to affect an autistic individual severely. They tend to be either hypo or hyper sensitive and react to situations quite differently, often seen as dramatically, to non autistic individuals. Autists may find interpreting others' comments or reactions difficult and can often misread situations. They can be easily upset especially when they are feeling tired, stressed or panicked by situations. Social occasions can be overwhelming and you will often find an autistic person sitting alone, calming himself down. Joe uses a tactic to get over this discomfort, which may be considered unusual for the autistic individual. He approaches everyone as quickly as he can and speaks to them before they speak to him. This way he is in control of the situation, what he says, how he needs to react. It is a way to reduce feeling cornered and under pressure in social situations. As he is a leader, within top management, within his professional career, this tactic has worked well for him and enables him to network superbly. I, on the other hand, do the complete opposite given the chance unless I know people, in which case I imitate Joe's methods if the situation allows me to do so. Imitation is something autistic individuals do a lot – it is their way to learn how to behave in social situations.
As a freemason's wife I struggled when Joe first entered the Lodge. I had to attend lots of social events with people I mostly did not know. The wives of Joe's proposer and seconder, were told to look after me. They did, and they continued to do so throughout most of Joe's masonic career thus far.
At this point it is worth mentioning that Joe's masonic break after his Master's year was forced pretty much for reasons which caused him to become overwhelmed with events which spiralled out of his control, through no fault of his own. We had a fantastic Master's year, running many events both large and small, and managing to raise £5000 for a local charity supporting children with disabilities and their families. We had tremendous support from his own Lodge, and from some other Lodges within Kent.
At the end of the year we were both physically, mentally and emotionally exhausted and a break was desperately needed by us both. One such event is tiring enough for anyone, a chain of events in just a few months experienced by a couple with autism was a challenge akin to climbing Everest twice in a month. To add to the pressure I was also in the throes of completing my doctorate in education.
Despite the immense pressures we loved his Master's year and I loved the dressing up and organising all of the events. Being a dancer and having been part of the competitive world for so long, Ladies Night was made for me. As the organiser, my social phobias were lessened as I could act a part; be another person.
Autistic individuals can sometimes seem rude and seemingly ignorant. Often there is a lot going on, lots of noise, lots of talking, lots of information, and autistics become overwhelmed easily. One way of overcoming this, if it is not possible to leave the situation and find a quiet space, is by 'switching out' and appearing to be ignoring what is going on. It can be a way to avoid sudden rage or episode of anxiety. Be patient, they will eventually 'come back'.
You will also find an autist is very exacting about detail; perhaps the directions to a lodge, the invitation to a lodge meeting, what he or she should wear. This is not just them being pedants, but the detail is essential for them to process the situation so that they can accept it as fact. They will get anxious about travelling, about being told one thing and then it being changed at the last minute.
It is important that you accept your fellow brother for the way he is. Autism is not an excuse; it is simply a difference in the way the brain is wired, which cannot be altered. Most importantly, be supportive and listen to them when they explain what you can do to help make their masonic life easier and more enjoyable. (written 2016)