Coaching People with Asperger's Syndrome

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This book arises from a lifetime's practical experience of work with people with Asperger's syndrome and autism. People with Asperger's syndrome easily drop through the net and fall into the wrong services - sometimes staying at home, depending on their families, sometimes falling into criminal justice or mental health services. Others, of course, fall into employment. Those in between, and there are many, benefit from the coaching approach developed by Bill Goodyear, which is described in this book.The book is crammed with practical tips, real life stories and new thinking. So often research results arrive from highly specialised work - this book attempts to synthesise a range of new learning from a number of fields and present a hopeful view of the condition - there are many entry points to use to create the possibility of forward motion and development.Touching lightly on some specific and recurring problems, the book unpicks our current understanding of the condition and describes in detail how to use coaching to empower and enable rather than to control and direct. Teachers, parents and other professionals working with this population will find the book useful and interesting (and amusing!), as will people with Asperger's and those people who come into contact with the undiagnosed or unnoticed "Aspies" - health, education and social service professionals especially, but also coaches, therapists and complementary health practitioners.

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CHAPTER ONE: Asperger’s syndrome—overview

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Ravi is 34. He lives in a flat designed for people recovering from mental ill health, having been diagnosed as schizophrenic and treated accordingly in his teens. He was diagnosed as having Asperger's syndrome about four years ago. After 15 years he is reducing his medica-tion, and will be off it all in a year if all goes well. He has moved past being angry and violent with his family, and has spent several years wandering around shopping centres fantasising. He is now at college preparing for an access to higher education course in order to qualify for university. He has learnt to manage his fear of being looked at, and is now learning to manage his time and to read for study. He is quiet, polite and passive, and is hoping to get a girlfriend soon. He is beginning to speak out in groups and is considering joining an acting class for fun.

I qualified as a teacher after a few years in which I realised I was going to work with children in one form or another: I was first introduced to mentally handicapped children and adults (as they were then known) in my early twenties. I then went to work with maladjusted children for a brief while, then to an adventure playground where we accepted all comers—the neurotypicals of thefuture. Awakening slowly, I then went off to train as a teacher and earned a degree in education. The first (and last!) teaching job I ever held was as a teacher of autistic children, which I took on in 1981, working for the National Autistic Society only 16 years after the first ever school for autistic children had been opened. I became principal of the school some time later, then moved into the world of adult provision (a total mystery for teachers at that time), thence to management consultant (a total mystery for all of us to this day), then to training, and finally to the adventure of developing a business coaching adults with Asperger's syndrome, which I began in total frustration about 17 years ago—better to do something than keep on complaining that no-one does anything. So I started a business uniquely offering coaching to people with Asperger's syndrome, which I have been doing ever since, sometimes employing others to support me.

 

CHAPTER TWO: What is Asperger’s and why is it a problem?

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Bernard is in his early forties. He lives alone with his mother, who does almost all of the domestic work, despite her heart condition. He is trained as a bookkeeper, but does not undertake any work except on a voluntary basis for a charity of which he is board member. Because his doctor lives on one side of a border and his address is on the other, he has been overlooked and ignored more than is right. Every now and then he gets a bee in his bonnet and tries to find out why people are not following clear procedure, and this creates stress for his mother. He does not know if he will retain residence of the council flat they share when his mother dies.

Asperger's syndrome is a social and communication disorder which hinders people in understanding others, communicating effectively, and thinking flexibly, so they have difficult lives, isolated in an intensely social world. Some create an independent life, others fall into needing institutional care, and there is a continuum of development between these two extremes. It is an autistic spectrum disorder arising from brain structure and function, and shows itself through behaviour. It is defined as a syndrome, which means that it is recognised through the close observation ofbehaviour and history, which in turn means that diagnosis is a skilled and imprecise art.

 

CHAPTER THREE: How does it arise?

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This is a condition that probably arises in the genes; it expresses itself though the personality in various forms of behaviour that give the diagnostician a chink through which she or he can see the condition at work. In fact it works on a number of levels, but it is only behaviour that is visible enough to be conclusive in diagnosis. New research is streaming out, and whilst it is pointing us in a direction, it is still far from clear about the destination. It does now seem clear that there is little expectation that one single cause will ever be identified. I won't go into exact detail about the research, as that would require a book of its own and would be outdated before publication, but there are some patterns which have been established by now and which are very helpful in understanding how this condition arises and how it exerts its influence.

Firstly, it is clear that there is a high rate of heritability, and the likelihood of creating Asperger's syndrome is enhanced if there is a history of mental illness, autism or learning disability in the family. However, nothing is certain in this area, and it seems that the condition can arise spontaneously. It also seems as though one mechanism for the condition to arise is that the inheritance is a predisposition which can be triggered by an environmental insult, which couldinclude being dropped, a difficult birth, sudden shock, or presumably some ingestion of insulting environmental ingredients.

 

CHAPTER FOUR: What do we currently know about this condition?

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Medical science reduces things to their constituent parts and focuses on the problems. Although this can be useful, the treatments arising from this line of thought tend to be for the constituent or co-morbid conditions. This is reflected in how we work with Asperger's, and has interfered with the focus of how we help people live successfully with this condition.

Arguably, psychology began with Franz Anton Mesmer, who was born on May 23, 1734. He started out on his medical career by exploring how the moon and planets might affect our health: he was exploring the idea of tides within the body, leaning on Newton before him and Newton's friend Richard Mead. It has been suggested that Newton had Asperger's (but this is inconclusive and a complete irrelevance here, though interesting). Apparently he hardly spoke, was so engrossed in his work that he often forgot to eat, and was lukewarm or bad-tempered with the few friends he had. If no one turned up to his lectures he gave them anyway, talking to an empty room. At the age of 50, he had a nervous breakdown brought on by depression and paranoia.

 

CHAPTER FIVE: Current support is poor

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There are two separate issues in the difficulties people experience arising from the condition itself: other people's lack of understanding and inflexibility. The paucity of service provision arises from Government unwillingness which itself arises from the difficulties in understanding the condition. Current support is inappropriate and often inaccessible, and though people with Asperger's syndrome have undoubted abilities, they often experience difficulties in their lives which prevent them from using these abilities.

There is very little support for people with Asperger's syndrome. What there is tends to focus on the immediate problems rather than the longer-term possibilities of creating a solution. This arises from two causes: the scientific approach of cutting a problem up into ever smaller pieces in order to understand it, and the lack of political will to target this group early in order to avoid expensive crises. Asperger's only shows itself when the problems arise, and so the problems tend to attract treatment on the old pathological model. So we have behavioural techniques (quite useful in fact), medication and some extra attention, and advice given to those around the person on how to help them adjust and how to make the environment lessof a threat and more comprehensible to them. As there are no dedicated budgets and these people fall between all the stools of mental health or learning disability, only those who demonstrate that they are having a sufficiently catastrophic problem are funded. So by the time you get to a specialist school or a residential home, you have had to demonstrate the necessity of that expensive funding. I think of it sometimes as qualifying: in order to qualify, you have to attract attention and make your case. In athletics you would have to pass the trials, run the early heats and stay out in front before you got the prize. Here you have to persist in demonstrating the extreme nature of your inability to live within the mainstream. There is very little support because although the potential demand is there, without money it does not generate action. Of course, by the time the qualifier gets the prize, a lot of damage has been done.

 

CHAPTER SIX: We don’t know what these people are capable of

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Some people with Asperger's syndrome have achieved fame and fortune, and some of those don't want to be labelled as such. Given that they often have a high IQ and a logical mind, we can expect achievers. Given that their experience is so damaging, we can also expect underachievers.

We are not born to suffer. We are born to thrive. If you live in a dry area and your garden receives little water, you plant plants which like dry soil. But when you are given a plant that likes wet soil, you don't kill it, you water it, you spend one of your 1440 minutes each day watering that plant. Because you know that given the right care, that little bit of effort can produce spectacular blooms. And so it should be with children like us. [Joshua Muggleton, age 17]

We only know about those people with this syndrome who feel bad enough to identify themselves. We can also see that these people have, by and large, had a bad time in life, and that these experiences will have created some psychological negativity. Those on a different part of the spectrum, or lucky enough to have found a niche, maynot want to identify themselves as having Asperger's—there is little benefit for them in doing so. We do know that they often have a high IQ, sometimes extraordinarily high. I also know from my own experience that some have great ability to see though the mess we NTs can create around ourselves, and that many have an intense interest in other people. I have sometimes found myself wishing some of the Aspies I have met could rule the world! It seems that NTs are rather poor at it.

 

CHAPTER SEVEN: We know that bad experiences generate negative psychology

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In terms of learning about life, there is no significant difference between Aspies and NTs. In both cases, bad experiences lead to bad psychology. Aspies have many real reasons to be frightened, depressed, unwilling to try, dreamy, isolated, off on their own.

In the UK, the average age of diagnosis for someone with Asperger's was at the last (quite recent) count 11 years old. One of the reasons for this is that it is difficult to identify a young child with the condition, though I do in fact know of several who were diagnosed at or around the age of five; others I know had to wait until they were in their thirties. A social and communication disorder only shows itself in situations calling for social and communication skills, which develop as the young child grows and learns from experience. It may well also be true that some people with Asperger's have a weakened sense of themselves compared to us neurotypicals, but it is also self-evident that they share the mechanism we all have that allows us to learn from our experience. Of course, they have slightly different experiences arising from their perceptual and neurological idiosyncrasies, and so what they learn may be a little different to what the rest of us learn.

 

CHAPTER EIGHT: Families are central

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Families are left holding the baby, and they have to go against the grain of the natural response and make sure that the child always ultimately rules. Coaching the family is a stronger intervention.

Tip No 49: Including family perspectives

What do the others think?

We spring from our families. I was a father at the age of 22, and although I had had no contact with my own father through the course of life, I never stopped to wonder if I knew what to do—I just got on with it. I suspect that we are programmed to be parents, and that children are programmed to teach us. There is a very natural process through childhood and then into adolescence by which we slowly step away from our parents until we are ready to take flight and manage on our own. Again, there are libraries full of books about this process; all I want to do is mention the automatic pattern that happens, and note that there may not be a similar pattern available to a family if their child does not make the move into independence at an appropriate age.

 

CHAPTER NINE: Coaching

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”Come to the edge,” he said.
They said: “We are afraid.”
“Come to the edge,” he said.
They came.
He pushed them …
And they flew.

Guillaume Apollinaire

B arefoot doctors were established in China as a way of getting healthcare out into the paddy fields, because fully trained doctors would not settle in the countryside. Coaching is a barefoot solution in that it is a pragmatic way of getting a service to people who need something which is not currently in existence or accessible.

These barefoot doctors were community members, still working the paddy fields and fully connected into the community, not part of a separate service. Similarly, coaching is a barefoot solution because coaches are not part of the monolithic health services, but small and flexible and so much more able to adapt to the individual.This style suits Asperger's much better than any bureaucratic tentacles can. The Chinese doctors were a “can do” solution answering a need in terms of what was possible. Training was brief and scope was narrow, but the contribution was nonetheless valuable. Coaching matches this: it is an epidemic profession nowadays, and there are so many coaches that they are likely to have spare capacity and be accessible. Like barefoot doctoring, coaching is a “can do” response to an epidemic of need.

 

CHAPTER TEN: Practical coaching

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Coaching feels to me like a spiral process: you keep on revisiting the same old patterns but from continually changing perspectives. The hope is that the coach can use her or his skills to extend the spiral so upward progress can be made faster and further than would otherwise be the case. The fundamentals I will describe shortly are important to work with and to keep fully in mind as you bravely go. The coach will use a variety of coaching skills in order to make sure these fundamentals are still actively in play as the plan unfolds. The processes form the basis of a coaching plan, and in practice (never as simple as theory!) the coach's job is to keep the subject aware of all this while taking new steps. You learn by doing. However, progress can understandably be slow if the person isworking against a backlog of negative experiences.

The first step in being coached, therefore, is to recognise a fewfundamental thoughts and to explore thoroughly how these thoughtsaffect your understanding of the way you lead your life. These fivethoughts are designed sequentially to open the mind to acceptanceof the coaching process:

 

CHAPTER ELEVEN: Coaching process

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So, having prepared your mind for action, there is a process to follow in addressing your desire to move forward:

1.Acceptance

2.Ownership

3.Choice

4.Learning

5.Practice

6.Planning

7.Criticism

8.Commitment

9.Adherence

10.Review

11.Adjustment

12.Perseverance

The past is what it was, the present is what it is. You have so much money, so many debts, so many friends, possessions and so on. Goodand bad things have happened to you, and nothing can be undone now. You are prone to this or that sort of thinking and feeling and your body is too fat or too thin or too tall or too small.

In all this you can separate the facts from the feelings and the feelings from the thoughts. The fact is that I weigh whatever I weigh and my body mass index is at exactly that point. My feelings about this might include sadness, disappointment and anger, and my opinion about it might be that I am over the hill and too weak to try and change things.

Once I have accepted all this, I am freer to move forward to the next stage. Without accepting it, my feelings are more likely to undercut me than to support me, and my opinion, hidden in the recesses of my soul, could sap my energy. A clear-sighted look at what is really going on in myself can lead me to accept that it will take real effort, physical, mental and emotional, to move me to a place of commitment to lose weight and follow whatever programme I choose to use.

 

CHAPTER TWELVE: Boundaries and behaviour

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“God, give me grace to accept with serenity the things that cannot be changed, courage to change the things that should be changed, and the wisdom to distinguish the one from the other.”

Reinhold Niebuhr

I want to take a short section to outline a behavioural approach and consider how it can be used in a family and coaching context, with adults or children, and to make some reference also to other structures such as assertiveness.

Some feel that the behaviourist approach reduces humanity to the level of animals. Part of me thinks this is fair; and part of me thinks there are more forces at work within us which raise us in some way beyond the natural dignity of the animal kingdom, but also complicate the issue. I would not be writing this book if I had not been introduced to this approach when I was a teacher; I would be in some other area of work altogether. I have no idea what the alternative future for me would have been, but without being introduced to this approach, I would have got out of teaching altogether. I wasteaching half a dozen autistic children and they were destroying my vision of what was possible—I could not find a way to get their attention. The lesson I was given then remains as fresh now as it was then. It opens the door to a more positive relationship which in turn opens the door to more complicated and NT-friendly ways of being. I want to share it: a refreshingly well controlled and crisp approach which may be a good antidote to all the confusing interactivity of coaching, and a wonderfully effective crisis intervention which allows you to develop a whole new way of relating. There is a wealth of experience and evidence that a behaviourist approach is most likely to achieve rapid results in changed behaviour, but it is not always clear how this can be organised in the context of a family, especially if the subject is adult.

 

CHAPTER THIRTEEN: Coaching people forward

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Coaching people forward to generate better conditions for themselves requires a specific dynamic, and is probably the subject of a great deal of the coaching literature that already exists. One of the differences between coaching Asperger's and coaching NTs is that people with Asperger's often live closer to crisis: much coaching, although it does of course relate to changing behaviour and moving forward to success, focuses more on the forward movement than the abyss.

Moving forward is partly about goals, and I have already written all I need to about goal setting: that process alone can carry coaching forward. This section is more about making the choices that generate and motivate the strategy.

Actually, most people with Asperger's often have quite reasonable dreams for themselves which may (if you want to be critical) be a little stereotypical, but are by definition well within the range most of us consider as an acceptable future. I want to explore what can be done to make these dreams achievable, and what constitutes a balanced and acceptable way of life. I also want to take into account some of the ways in which people with Asperger's tend to subvert the usual pattern of life, and the possible consequences ofthese subversions. We are now moving the focus away from the more severe problems, where the need for change is more obvious, and towards the area in which the desired change is generative and creative rather than curative.

 

CHAPTER FOURTEEN: Coaching out of crisis

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L eft unsupported, people with Asperger's often drift into negativity and harmful thinking patterns, sometimes leading to breakdown or collapse of confidence. I have had a lot of experience in attempting to coach people forward from this position, which is a rather specialised process. This specialisation is one of the most stressful areas of work for me, although it is largely and prosaically no more than very intensive listening and reflecting. Often a strong crisis is associated with a level of obsessive-compulsive thinking, paranoia and other distorted thinking. The particular level of listening required is a highly adapted one of acceptance with boundaries. For a relationship to be healthy, both parties have to be themselves and not feel constrained or pushed into the other person's map of the world. I have sometimes found myself tied in emotional knots when a client of mine can only accept the other person agreeing with his or her point of view. It is rare and extreme to find someone who completely insists on total agreement, but it is well within my experience in this population. Fortunately, most people I meet have not gone so far down the road, although many cannot tolerate direct disagreement without wanting to run or fight.

 

CHAPTER FIFTEEN: Social skills

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W hat is the Christmas party for? Well, as Tony said: “I am often amazed at how NTs waste their time looking after each other, stroking each other.” The group experience gives us NTs a chance to make sure that others are feeling good, to check out how they feel about us, to enjoy that ephemeral connection which seems to live in a wine bottle, and to gain a bit of advantage by being noticed.

Specifically, we give a lot of eye contact: some of it asked for, some of it not asked for, some of it withheld. We rub a lot of shoulders, laugh at a lot of bad jokes, and create a mini-myth for the four or five hours we are in the arena. Until about 10.30 we also listen to each other; after that we approximate our verbal inputs to the last person's, or just make people laugh. Or just laugh. In this myth we like each other, enjoy each other's humour, get interested in the things they do and the people they know. We do a major rapport dance in which we somehow enhance each other's good feelings, in which we are somehow included. We let our hair down a little in order to share some feeling of intimacy, and then we usually go home to our partners—but sometimes we “go for a coffee”.

 

CHAPTER SIXTEEN: Addiction and habit

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Some people are prone to addiction and threaten their own health and welfare with their habits, which become very unbalanced. Sometimes the ensuing damage sucks in family members. Others just enjoy their habits, but sometimes the habits become unhealthy in a more controlled, obsessive-compulsive way. These patterns are not exclusive to the population of people with Asperger's—far from it in fact: there are NT alcoholics and drug takers and people who exercise so much that they damage their hearts, legs and spines. Sometimes the habits are illegal (or the substances are: marijuana, ecstasy and the rest). More often they are legal, though the results can be less so (drunken violence, shoplifting). Sometimes they are undesirable and often they are expensive—pornography can take a lot of money out of your pocket very quickly and damage your fantasy world of relationships. There may also be a social component of the risk (drug dealers can turn into fantasy friends who are really connected to you, but only on condition that you make your regular purchase).

 

CHAPTER SEVENTEEN: Anger management

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What helps you most in managing your anger is not getting angry. If that is not possible, then removing yourself early is the next best thing. If that is not possible, then refraining from acting out the anger though violence is better than hitting people. More seriously, there are two routes to anger management: either superficial and behavioural ways of managing difficult situations or finding ways within yourself to move on from being angry so you can manage the situations in a way that is less damaging to yourself and others.

The push should, of course, come from the individual: “I don't like what happens when I get angry, I don't get what I want, I don't feel good about myself, and everybody hates me. Hmmm. What else could I do instead of throwing things around and hitting people?” Anger management has to be the choice of the individual: feelings arise (can I change how I feel?) and behaviour is exhibited in line with these feelings (can I change what I do?). Of course, coaching from others can help in clarifying the answers to these early questions and in helping the changes to happen (in both cases the answer is yes), but only if the person is willing to engage about his or her anger.That motivation can be encouraged by those around, of course (call the police, seek payment for the broken chair, and so on).

 

CHAPTER EIGHTEEN: Romance

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The most desired change in most young men with Asperger's Syndrome is that they want—but cannot get (or keep)—a girlfriend. No doubt the converse is also true; I have less experience of these conversations, though what I have heard tends to tell me it is so.

A partner offers connection, intimacy and status, and perhaps to an extent a sense of completeness: we are nominally monogamous creatures, and perhaps getting the partner means that you can stop trying and enjoy feeling complete. These simple motivations seem to be identical to those held by most of the population. I am aware that sociological changes may not quite bear this monogamous world view out, though these changes may be more economic than social. It is quite simple in the end: pop down to the bar on Friday night and watch them all flirting away. People like the opposite sex, and try to “get off” with them. There is a common pattern here for certain: people want partners. Growing up with Asperger's must attack your confidence, and in fact the inherent perceptual deficits that arise out of the neural architecture probably do mean that flirting is a difficult thing to learn: it is one of the most responsive and unpredictable conversational and behavioural games to play.

 

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