Autism Spectrum Condition: A Guide

Autism Spectrum Condition: A Guide

I wrote document up from the various guides to Autism Spectrum Condition I consulted in light of my own diagnosis of ASC in September 2021. Whilst the case of each person on the spectrum will be different, I write on the understanding that since there will be common features and shared experiences in relation to the condition, my own personal observations may well contain a universal significance, serving to inform, help, and guide all in some way. In the main, though, I use personal experience and knowledge to support and exemplify key points established in the literature.

Contents

Personal Knowledge

Introduction

What is Autism SpectrumCondition (ASC)?

What are the Signs andCharacteristics of Autism Spectrum Condition (ASC)?

Characteristics of ASC

1. Social Interaction

2. Social Communication

3. Social Imagination.

4. RepetitiveBehaviours

5. Special Interests

6. Difficulties withSensory Processing

7. ASC and OtherDisorders

Communication

Anxiety

Social Skills andRelationships

Family and Friends

Foreword

This is a guide I have developed in light of my own diagnosis with Autism Spectrum Condition.

This guide has been informed and developed based on the basis of relating my own experience of living with an undiagnosed condition to the views of others: professionals, individuals with Autism and those who live with or support them.

I wrote this guide in order to bring my own personal knowledge to bear on this most complex of subjects. Since autism is at least as much a subjective experience as an objective fact, trained experts and professionals are knowledgeable 'on the outside' and somewhat in the dark when it comes to inside knowledge. I can write from the inside. And whilst I have no professional expertise in the area, I do have a strong academic background and training and know how to access, test, and evaluate information. I therefore feel able to balance the objective and the subjective to produce a reliable and accurate guide to this most complex of conditions.

This guide has been developed to provide information for those who are living with autism or living with or in some relation to someone, particularly a recently diagnosed adult, with autism.

I wrote this guide to be a useful resource to consult and draw upon, with personal experience bringing the dry list of traits, characteristics, and problems to life, hopefully leading to a common understanding of autism in adulthood. There are also tips offered to help people deal with any problems that may arise in negotiating the often confusing world of others.

Personal Knowledge

Some people refer to 'stories' when it comes to speaking the truths of 'lived experience.' The notion of 'lived experience' as truthful is currently under assault. Controversies here would be avoided if people simply learned not to mix their logics. I'm a great believer in narrativity. The stories that people tell of their own personal experience help bring dry facts to life. Those who cleave to objective reality can be dismissive of personal experience, in the same way that they are dismissive of feelings and emotions. As an historian by training, I was always drawn to the past as a 'lived experience,' praising the work of those historians who brought the facts of history to life by emphasising the role of human agents in making history, making not only the facts of broad objective trends and tendencies but also meaning. Reality, in fine, is constituted by both objective and subjective dimensions, and this is nowhere more the case than with autism. I therefore refer to 'stories' as 'personal knowledge.'

I wasn't diagnosed until I was 56. That is not only an awful long time masking, it is a long time evading and hiding. And it is a long time trying to cope with impairments in almost everything that makes for a happy and successful life. In all that time I learned to function inmy own special way in my own special areas of interest and/or competence. I have even been hugely successful in certain things, earning a PhD and writing on a range of issues in the field of philosophy, politics, and culture. But I have lived a half, and probably merely a quarter life or less in the process. In all that time, habits of concealment became second nature to me, my asocial identity, repressing healthy potentials and diverting them into sterile channels when not outright suppressing them. I can speak with some insight as to what it is to live a buried life. From this perspective, diagnosis contains the promise of rebirth and renewal, unearthing the true self.

With respect to the written work I have done over the past quarter of a century, it has been encouraging that so many have contacted me with praise and thanks for my written work, engaging me at the level of ideas. That tells me that the 'world of my own' that I have created to find a place to be and to live is also in some way the world of others, with shared interests and concerns. It may be that most of us are living buried lives and are in search of the happy ideal of the sane, rounded, and balanced society. If it is a dream, then it is a dream that I share with others. I have not disappeared into a pure subjectivity and can still communicate with others. But that communication is always mediated at some social distance from others. The issues with social interaction and communication remain and, indeed, through a wall of words, has become entrenched over time. There are many people on the autistic spectrum who remain undiagnosed until late in life or who never get diagnosed. Some have found their special place or niche, a way of functioning well; others have learned to cope. For my part, I gravitated towards education, research, and writing, a world at some remove from 'normal' society, and stayed there. I turned coping into a fine and endlessly creative art. In a quarter of a century I have written more than twenty million words, and some of them quite good. Indeed, I have had a great deal of success in that world, although, significantly, I chose to publish in free access so as to avoid the hassle of working with publishing companies, editors, others who would interfere in my work. I attended business classes in 2013 with a view to setting up my own tutoring and e-publishing business, earning a City and Guilds in business enterprise. The course leader who advised me on marketing - and who I liked to refer to as 'my business advisor' to make it look like I knew what I was doing - hailed me a genius and declared that I would 'make a million.' In truth, I hated the aggravation that came in dealing with others and just carried on writing. I gave my work away for free and hence a avoided engagement with others. This was less masking than hiding. And I was world class at it. In my defence, I should point out that I am far from being alone in wishing to avoid the great public. There are entire political movements now that make a virtue of their possession of truth and seek to 'educate' rather than persuade the public by way of that truth - which means impose it in an extra-political and anti-democratic sense. I see it clearly and oppose it vehemently precisely because I see the same characteristics in my own 'philosopher-king' / enlightened despot persona. I know that I have been the little - and big - professor, and I know it to be socially inept and politically incorrect. It leads to a dead-end in the world of practical reason.

At the same time, the isolation and the stress of encountering the social world gradually started to take a toll on mental and physical health. I have lived in a state of constant anxiety. This, in turn, had a physical impact. In time, I developed not one but two chronic illnesses, and it was this turn to the physical worse that caused me to approach my doctor with what I termed 'psycho-social stress' or anxiety. Convinced that I was physically fit – I would do 500 press-ups daily and hike miles in the country – I sought another reason for my physical complaints. I noticed that the trigger for my physical problems was always some unfortunate encounter with others. And I noticed that my encounters with unfamiliar others did have a pronounced tendency to be unfortunate. To those others, the things I complained of would be considered normal interaction and communication. In one publishing/editing venture I was accused of being uncooperative. I didn't like to say that when I write on a subject, I know what I am doing and don't need any input from others. Any input interferes with the creative process. Effective and fruitful cooperation is based on a division of labour. Basically, the person offering suggestions and materials - the bulk of which were already known to me and of decidedly average quality - was seeking a parity with me that, intellectually, he lacked. Now how can you tell people who are paying for editing and publication that they are annoying little irrelevances who, in offering what they consider to be expertise, are making a difficult problem ten times harder? Diplomacy is not my strong point, so I dropped my usual hints, and was promptly accused of being uncooperative. All the time this person was nagging at me, I wrote more than 200,000 words and was trying to order and organize them so as to make them readable to your average, interfering, annoyingly cooperative outsider. 

The things that neurotypical people take for granted - interaction and communication - cause me a great distress and can occupy my every waking thought, lasting days, weeks, months. I joke that I have a long memory and harbour grudges. The upset burns deep into the psyche. Sooner or later, though, that burning has to have a deleterious mental and physical effect. The fact is, however, many people on the spectrum do manage to achieve a degree of success in certain things in life, to the extent that most neurotypical people will come to see them as 'normal.' A little quirky, maybe, eccentric most definitely, but not a cause for concern and intervention. And that seems to be how I slipped by as the decades past. I won't say I passed unnoticed. People most certainly did notice my 'odd' nature. I did things very differently. But however I did them, I seemed to get the results. Results wise, I was one of the leading two or three performers at university (frankly, it came as a shock to me to learn, after one set of essays, that someone had scored a higher mark than me).  I worked hard, did my work, scored high marks, returned back into my private space where no-one would see me, a mystery to all. 

Most people will be unaware of the difficulties people on the spectrum experience: they don't see those difficulties, therefore they do not exist or are not difficulties at all, merely the normal everyday struggles of life. Everyone has those struggles. I don't know others. I can only speak for myself. Things that appear to come easily to others can seem like mountains to me. And that's before we come to the really difficult things in life.

I went from being a decidedly average student at school to being a high achiever. I couldn't work in the same way and at the same pace as others, and so constantly fell behind at school, where everyone has to learn the same thing at the same pace. The further you go in the education system, though, the more you are expected - and able - to take control of your own learning. Many students treated 'study periods' as 'free' periods before getting back to class. I relished the time alone, devoured texts, took notes, revised, memorised, found my results improving. The more I had control of my learning, the more successful I became academically. I went on to study for a first degree, then moved on to masters level, and then finally a PhD. Academically, I was enormously successful. But that success had come at a fearful social cost. I can't say that I had ever had much of a social life, but what little I had was progressively eliminated the harder I studied. Hence I didn't so much mask my issues with autism as evade them. Those few academics with whom I came into contact certainly noticed my oddities, the fact that I could be uncommunicative and uncooperative, insisting on my own view and my own way. I was indulged in this on account of the fact that my work was exceedingly good. It seemed that I had read everything and even understood a lot of it! Blind eyes were turned in my direction. I avoided having to give presentations and address classes. I was free to research and write in my own world. I did this for thirty years, generating text after text. I was successful in my chosen field, but non-existent everywhere else. The cost to my social, mental, and physical health of living an inhuman life has been immense. If I have one regret – and I have many – it is that all those years are now gone for good, the time is spent and is a life that is beyond recall. And I see clearly all that I could have done with that time, had I known what I was dealing with. The only thing worse than sadness at the thought of wasted potential is bitterness in knowing that there is much more of an unchangeable past behind you than there is of a changeable future in front of you. On a more encouraging note, the best years of your life are those you spend in self-knowledge. If only you can get others to understand what you have come to learn the hard way …

When I received my diagnosis of Autism Spectrum Condition on Monday 20th September 2021 aged 56, I was relieved. I wasn't surprised, though. I had read the relevant literature, paid close attention to the criteria, and had been most concerned to test my self-diagnosis. I learned good habits in the academic world. I learned how to test ideas and theories, search for contrary views and evidence. Something isn't true because you want it to be true. Indeed, it is when you come across an idea or a theory or a view that you most dearly want to be true that your critical faculties need to be most on alert. It is the easiest thing in the world for people to convince themselves that their favoured views are fundamentally correct. I always test to see why my choices and preferences may be wrong. I received the diagnosis withso much relief because, having read so deeply in the subject, I felt that here was the cause of all my social, mental, and physical difficulties, and nowhere else. Having come so far, I didn't have the energy to begin the search all over again. It seemed obvious to me. So obvious that it is incredible I came so far, struggling for so long, without AS or something being detected. In my assessment interviews I said that over time I learned to fail so beautifully that others came to see it as success. So I went undetected and undiagnosed and, in the process, bore the full brunt of social and psychic dislocation. That exacts a terrible toll on relations to others, and on mind and body. The mere fact that I have survived is nothing short of a minor miracle, in part due to my own indefatigability and strength of character, in part due to the unconditional love and support of my mother and father, both of whom were on the receiving end of my frustrations in light of unfathomable failures.

But now there is relief. Knowing that I have Autism Spectrum Condition enables me to go over my life and answer many of the outstanding questions that my life at cross-purposes with others has always begged. My odd behavioural traits now appear perfectly reasonable ways of dealing with the difficulties of my condition in social situations.Those traits made me unpredictable to others, causing them to be nervous and apprehensive in my company, further reinforcing my own tendencies to keep distance and withdraw. That 'oddity' now has a clear explanation behind it. I'm not anti-social and anti-people, just a sociable, affable, genial person who struggles with others in social contexts. I'm not that odd at all, then. I have Autism Spectrum Condition.

In the first instance, then, I was relieved to have the explanation for all the difficulties I had experienced throughout my life, and have that confirmation with the diagnosis. At long last, the reason why I had struggled so long and hard with the demands of life had been discovered. ASC made sense of the problems I had faced over the years, the awkward relations to others, the painful events. Instead of turning on myself as someone who just kept messing up or was inadequate in some way, I was able to see myself in more positive light, even heroic – frankly, I had achieved so much in struggling, almost alone (my mother and father were always with me), against insurmountable social odds. I had done well to survive, let alone thrive in certain areas. The diagnoses changed the way I looked upon myself. With knowledge and self-knowledge comes a great confidence in yourself as a person. I was no longer someone who was awkward, lazy, stubborn, difficult, uncooperative, or any of those words used by social 'authorities' of various kinds that you encounter in life. I don't blame them for their judgements, they were as ignorant as I was. At the same time, I do think life would flow much more smoothly if said 'social authorities' were a lot more aware of the range and variety of human beings, rather than address everyone as the same. I've never been the same as others, and I doubt that anyone has – it's just that some are more differently different than others. The diagnosis helped me not only draw a line under the past, but face the future with greater confidence, if – and it's a big 'if' – others also act in light of knowledge and its understanding. In the first months of first self-diagnosis and then diagnosis I have found people claiming a degree of knowledge only to find understanding almost completely lacking, resulting in a continuation of problems. Remarkably, although I am now able to act in light of diagnosis and an AS Report, I found myself in intolerable employment situations, suffering meltdown, shutdown, and then breakdown. This. Should. Not.Happen. Hence the reason for this guide. There is freedom inknowledge and self-knowledge. The hard part lies in putting thatknowledge – the objective knowledge for others in society tounderstand and act on – and that self-knowledge together in the happy habitus. Coming to know who you really are and hence being able to grow into your own being is a personal liberation. It also needs to be a social liberation, too, since human beings are social beings: we need others in order to be ourselves – the can be no evasion and withdrawal without deleterious personal consequences. On a personal level, I am not able to manage the difficult social situations of life with a high degree of self-knowledge. I know who I am, I know what I can do, I know what I struggle to do. That knowledge makes it easier to manage social engagement and exchange. I can now enter into social encounter with more confidence, anticipating difficulties, avoiding putting myself under impossible pressures, and not imploding in face of frustrations. I can now make the best of my potentials in hope of living a happy life. But, to repeat, this freedom and happiness needs the understanding and cooperation of others. Diagnosis was the end of a long life not knowing about ASC, and the beginning of a new journey, this time, hopefully, as a mutual self-discovery conducted in the company of others. In this way, we can join together in learning about life in greater richness, variety, and depth, each of us learning to relate to the world around us in new and exciting ways. At the same time, this self-discovery is not so much a self-change as becoming comfortable in your own skin, growing into your own authentic being, accepting all your oddity for what it is – a strange beauty. I was born this way and can do no other – I can, however, learn to do it better. With a little help from my friends.

Despite suffering a life of endless difficulty, I'm still inclined to see autism as yielding a uniquely different perspective on the universe. If I don't altogether see autism as a 'superpower,' I do think it comes with a certain uniqueness and originality, something that can neither be learned nor acquired. You don't so much suffer from autism as suffer from the incomprehension of others who know little or nothing of autism. I don't reproach others for this incomprehension. A lot of insensitivity comes as a result of ignorance. I can to seek referral for ASC so late in life precisely because I, too, was so ignorant for long and, no doubt, insensitive to boot. I have to confess that, struggling to gain a reaction from my father as I spoke to him, I once complained of the emotionless expression on his face, sayingthat 'it's like talking to someone who is autistic.' All I knew of autism was its existence as a term of abuse. That abuse – born of frustration in communication – amounted to the full extent of my knowledge of autism. Incredibly, I never once saw the traits in myself, even though they now seem obvious. So, ignorant, and some time (mercifully little) abusive, I am hardly in a position to reproach others for their lack of knowledge. But understanding is still imperative if disconnection and miscommunication is to be avoided.

Autism comes with a lot of social implications that are daunting for those who suffer impairment in interaction and communication with others. At the same time, there are a lot of good things about the condition. I wouldn't wax lyrical about the possession of superpowers here. Special interests can become obsessive in a way that is superb for study and research and lousy for personal and social relations. I'll just say that I can write just as obsessively about Hegel, Kant, and philosophy as I can about football and Elvis Presley. If you have a high-brow subject as your special interest, you may be declared a genius; if you bring a similarly intense level of dedication to football and pop music you are labelled an idiot. It's all the same to me. Basically, I am an expert by way of the things that interest, amuse, and entertain me. I am an inveterate pleasure seeker in that respect, which is no bad thing. 'Act well and rejoice,' wrote the philosopher Spinoza in his Ethics, 'there cannot be too much joy.' I've been happy, I've been depressed. Joy beats misery hands down. But you should honour the darkness all the same. A full and rich life is one that is lived in all shades and all colours. I have a certain unique way of looking at the world, which means that I can often express 'unusual' thoughts. Seeing all things as interconnected, I like to mix and match, weaving seemingly disparate elements together into the one seamless whole. I weave and spin, and spin and weave. This is the positive aspect of living without filters, barriers, and editors. If seeing the world immediately as one can be an overwhelming experience, you can also see the world as whole and wholesome. I see the relations between things and establish the connections. I will tend to ponder things more deeply than others. If it is good to be a participant, joining with others to plunge into life as it unfolds, being at some distance others means that I have time and space to survey the whole, as if I am the spectator of all time and existence. It brings a certain depth in vision and perspective. I see reality all the more clearly for being so removed from 'the real world.' 

I feel a certain reassurance that so many people on the autism spectrum have achieved so much, but I don't insist on such achievement as a qualification of worth. One of the most important things about the self-knowledge that comes with diagnosis is the way that it frees a person with autism from the need to validate his or her existence. Over the years I developed a tendency to cite papers, authorities, facts, anything in my defence. I have lived life in defensive mode, always seeking to justify myself. There is great relief in knowing that neither I nor anyone else needs justify their existence in this way. I exist as I am and that is more than good enough. You don't have to be Einstein or a maths genius or any other kind of genius for your own worth to be respected. Still, there ain't half been some clever so-and-sos in the autism community.

I'm comfortable with my autistic nature, if that is what my honesty, integrity, independence, originality, open-mindedness, generosity of spirit, and no little modesty are to be attributed to.

When I first started to research the subject, prompted by my doctor, I came across the expression Autism Spectrum Disorder. I could see the reason why the term 'disorder' was used, but it made me uncomfortable for the implication that we are dealing with a personality trait that stood in need of correction. Against this, I would argue strongly that proper functioning is a two-way process involving both personality and community. From my vantage point on the outside, I feel that I look upon society objectively, without the bias of stakes and interests, and much that I see as 'normal' strikes me as plain wrong, driving people to the edge of breakdown and insanity. I believe that the mad mechanarchy of the 'real' social world is the thing that is out of order, not me; and whilst social isolation can be cruel and miserable, there are times when I feel I have done well to rufuse complicity and stay out of the disorder. I am not out of order, just differently different in my own special way. If that condition comes with a price, so does complicity with a badly ordered world. So I tend to see the issue as one of a mutual learning and growth, with all sides coming in time to complement one another.

You and I are different and express our difference around a similar thread, and one of the benefits of obtaining a diagnosis lies in discovering that you are much like other people: we are all just as muddled and messy and ignorant andwell-meaning as each other, and knowledge helps us to rub along together just that little bit better, for the sake of everyone's good health and happiness. 

There is a debate to be had as to how much diagnosis actually changes things for adults past the age of 40. It stands to reason that the big changes will come earlier in life. I'm afraid thepatterns and directions of my (un)social behaviour got hardwiredaround the age of 19, with the result that I spent three decades and more in education ('back to school' as I now call it). Struggling with so much in 'normal' social life, there is a temptation to stick with theone or few things you do well, and do them repeatedly to the exclusion of other things, things that make for a rich and richly enjoyable life. If I am left lamenting thirty wasted years, I can still warn others of the pitfalls and what it takes to avoid them. If I can't get those years back, others can make better choices earlier in their lives to make the best use of their time. And if the things I say can guide and reassure people in some way, I'll take some comfort in that. I wouldn't mind those thirty years plus back, mind – I would do things very, very differently. I am not a 'no regrets' kind of person. I have made plenty of errors in my life, errors that could have been avoided with better knowledge, awareness, and guidance. And it is in this spirit that I now write. Diagnosis is a useful tool helping understanding on the part of both persons with autism and the community at large. Such understanding is crucial in drawing the best out of all people, whoever they are. 

Introduction

This guide is based on both personal experience and objective knowledge (that is, the literature on autism, which has a certain objectivity when it comes to the subjective experience that is autism). My understanding is that there is no objective biological or neurological basis for the diagnosis of Autism Spectrum Condition, meaning that, ultimately, diagnosis is always a judgement call on the part of various professionals in the field. The experts, in other words, are always assessing from the outside and are always somewhat in the dark. I'm on this inside and hence can therefore shed some light on the condition. I have written this guide specifically for anyone who is related to or has dealings with adults who have been diagnosed with Autism Spectrum Condition (ASC). That said, autism is autism and if the spectrum is deep and wide and tall, there are also common traits, making this guide generally relevant, with certain qualifications. This guide has been written up from the notes I took in researching the condition these past couple of years, prior to my own diagnosis.

 This guide is designed to bring people directly to the key points. In particular, the intention is to:

• help people understand what autism spectrum condition is; 
• offer advice about people can do to make life easier for people with autism; 
• indicate what help 

and support may be available; 

• signpost people to 

other sources of information.

I refer throughout to Autism Spectrum Condition (ASC), for the reason that this is the term that appears in the Report that accompanied my diagnosis. I had initially sought referral for Asperger Syndrome (AS) (and still have a tendency to refer to a condition of AS). You can often encounter the terms Autism Spectrum Disorder and the abbreviation of ASD in the literature. Some just refer plainly to autism. In this brief guide I am not concerned to differentiate between all these terms, and so with simply refer to autism and ASC to cover a range of developmental disorders from the perspective of my own diagnosis. Which the cases of each person will be different, there are enough similarities and commonalities for the information conveyed in this guide to be insightful and useful in some particular way. It all depends. I can only advise people to do as I did and relate the information to their own personal experience – only you will know how to do that. Given the particularities of each person and each case, some points and some sections will be more relevant than others. Feel free to ignore the parts that are not relevant. But pay attention all the same. I am constantly amazed by how much of my own character I have not only missed in the past, but continue to miss. In my assessment interviews I didn't make an issue of smells. My reaction to noise is so extreme as to be pathological, and so I was concerned to emphasise the fact that I constantly wear earplugs whilst listening to music over headphones. Within a few months of diagnosis I obtained a job which involved using chemicals and cleaning sprays – I was quickly disoriented by the smell. I hadn't noticed a problem with smell for the very reason I controlled my home environment with an iron rod, banning washing up liquids, carpet powders, and insisting that the washing machine is only used whenever I am not around. Having controlled the problem so thoroughly for so long, I had forgotten that I had a problem. So read carefully, for the reason that things you may not think are relevant to you may well be. You may,  therefore, find it useful to refer back to different sections at different times, seeing the extent to which they apply or not. 

What is Autism Spectrum Condition (ASC)?

Autism Spectrum Condition (ASC) is a neurological – not psychological - condition which affects the way that a person interacts and communicates with and relates to other people and the world around them. ASC is not a mental illness. Some parts of the brain are over-wired, and work more than other people's brains, whilst other parts are under-wired. "They don't function the same way as in a typical person .. you have to learn social conventions; you don't pick up on them instinctively. Logic and reason dictate your actions more than emotion and instinct." (Carol Shay Hornung). Logic and reason can tell you that you are right, your speech and action and their effects on others can tell you that you are socially and culturally wrong, not to mention politically inept. The temper of life is judicious. I should have been a mathematician, an engineer, or a computer programmer; instead, I specialised in the messy stuff that is humanity. 

The extent to and specific ways in which those with ASC areaffected varies according to each individual.

Most recent reviews estimate that 1–2 people in 1,000 have autism and close to 6 in 1,000 for Autism Spectrum Disorder; Asperger syndrome is about 0.3 per 1,000. The apparent increase in autism is a result of better testing and a willingness of people to seek referral. The causes of autism are as yet unknown. All that we do know for certain is that the condition is not caused by bad parenting or environment, but is something that people are born with – autism is innate and not acquired. The guilt that many people feel with respect to their actions and behaviours has no scientific basis. Greater knowledge here can free people from assuming burdens that are not theirs.

ASC is now usually diagnosed in childhood, when the typical character traits will become apparent. This, however, has not always been the case. Looking back, I have no trouble at all in seeing all the warning signs in my own behaviour, signs which were always explained away and rationalized. I would, for instance, tend to be a little distant and uncommunicative; this was put down to being shy. I would always be a little behind the pace when it came to learning; this was put down to the fact that I was always the youngest in the school  year. I was not only slow in acquiring certain skills, I never didlearn to ride a bicycle; this was put down to me being clumsy, inept, and awkward. My headmaster described me as 'vague' in a parent-teacher meeting, telling my parents that he could never be sure if he was getting through to me; this was put down to me being lazy, awkward, and stubborn. I have many more examples like this, testimony to a lifetime out of kilter with my surroundings. Had anybody cared to investigate further, they could have saved me and others a lot of heartache and problems with mental and physical health. And they could also have unleashed a lot of great creative potential for the good of society. Through a lack of knowledge and understanding, many adults with ASC go through life undiagnosed, or come to be diagnosed late in life. I was only picked up as a result of my determination to identify the root causes of the physical ailments that were starting to strike me down, despite a decent level of physical health. Most people, I would suggest, find a way of coping and go through life just coping. Whilst survival is better than its alternative, it is so much less than the thriving that is the birthright of everyone. You, too, deserve to be happy and have a right to dream. 

Individuals with ASC are affected to different degrees and in a variety of different ways. The situation may be complicated further as a result of co-occurring conditions such as learning difficulties, Attention Deficit Hyperactivity Disorder (ADHD), anxiety, and other things, hence the notion of ‘the autism spectrum’. ASC can affect adults with any level of intellectual ability, from those who have severe learning difficulties to those of average intelligence to those with high intelligence. Having ASC doesn’t come with any obvious implications with respect to intelligence. For my part, I was something of a slow learner, always a little behind others at school, and frequently abused as stupid as a result. The more I came to control my own learning, the more easily I progressed. The longer I stayed in the education system, the more I succeeded, eventually earning a PhD. 'He'll find his own level,' my Physics teacher smirked to my parents at a parent-teacher meeting. I did, as indeed did he. 

I later learned that I had the highest reading age of my year in junior school (ages 7-11). Despite this, I struggled with school tests and was put with a younger class by the final year. I was always in the second stream at senior school, too. The fact that I had a certain degree of intelligence only served to support successive teachers in their view that I was lazy and didn't apply myself. The fact is that I was bored, worked only on things that interested me, and had no idea how to organize tasks and materials at school. I turned up, made a fist of whatever came my way, and then went home. School was a rude interruption in my otherwise pleasurable life. 

Those who are more seriously affected at one end of the spectrum may well have a learning disability also and hence require high levels of support. As my example shows, however, those at the other end of the spectrum, with what is described as a high-functioning autism, may still experience certain difficulties in organising materials and understanding tasks, despite a high level of intelligence. With the right support, they could easily become successful and even excel in their chosen field. Just be careful when your chosen field is incredibly niche and narrow, and you don't have a life outside of it.

What are the Signs and Characteristics of Autism Spectrum Condition (ASC)?

Individuals with ASC have significant difficulties relating to other people in a meaningful way. The key word here is 'significant.' Having spoken with neurotypical people about ASC I am struck by how often 'normal' people will say that they, too, share certain difficulties mentioned and that, in consequence, as if by way of reassurance, they too are 'on the spectrum.' Not only is this not very reassuring - confirming the idea that there is something wrong with people who are autistic, something to be apologetic for - it misses the point by a wide mark. It was explained to me this way by the nice lady who interviewed me during my assessment process: whilst many people will tick many of the AS boxes, they will not tick as many of those boxes nor suffer the conditions they denote with the same level of intensity – it is ticking boxes 'above and beyond the norm' that counts. 

So what, exactly, do these boxes contain?

We may begin with what is called the 'triad of impairments' (or ‘the three impairments’). These refer to issues with: 

• Social interaction  
• Social communication  
• Social imagination  

Social interaction 

Individuals with ASC may have difficulty relating to others, understanding social rules, respecting social protocol, maintaining contact with and relationships to others. They often acquire the reputation for being unsociable, whereas it is most likely the case that they want to be sociable, don't quite know how, become frustrated and disheartened and thus withdraw. They may also find it difficult to adapt their behaviour accordingly to suit different situations. The result is a situation in which individuals with ASC, craving companionship and friendship, withdraw into a life of cruel isolation, with others choosing to leave them alone since it looks like 'they prefer to be alone.' 

Social Communication

Individuals with ASC may have difficulty with verbal and non-verbal communication. They may, for instance, struggle to understand themeaning of facial expressions, gestures, or tone of voice. They may also be very literal minded. I had to spell this out as a result of a time-consuming misunderstanding in my last job. I was told to 'strip the beds' in a number of rooms in a hotel. There was a coach party arriving and the rooms needed to be available by 4pm (it was 11am). I did as I was told and stripped the beds of everything, only to find that I was only supposed to remove the linen (thus solving the issue of why my bags couldn't fit everything I wanted in - I spent a long time going in search of more bags). Looking at the mayhem and disaster the action caused, I told the manager that 'I am very literal minded.' To her credit, she said that she only realized this too late. She had changed my instructions for the day and issued her orders quickly without checking I had understood completely what it was I was supposed to be doing. This was not my usual job and I had received no training. The result was a miscommunication that individuals with ASC know all too well. To be constantly confronted by the same misunderstandings can be very disheartening and, again, can cause people with AS to withdraw, withdraw from relations to others, withdraw from the world of work. The stress and strain can simply be too much to bear. To be confronted with the same problems, the same misunderstandings, over and again, gives the impression that things are hopeless. As the inestimable Françoise Hardy once sang, À quoi ça sert? What's the Point? Why even try?

Social Imagination

Individuals with ASC can express a strong preference for routine, regularity, consistency, sameness, and familiarity. So used to be at cross-purposes with others, with things going wrong, when something goes right, those with AS will tend to want to repeat the experience or the situation. This can lead to difficulties with change and unpredictable events, spontaneity, and the new. Preparation and planning ahead to render the unpredictable more predictable is key. Without preparation and planning, individuals with AS can tend to be change-resistant, drawing on a lifetime's experience to expect the worst when it comes to the new and unfamiliar - for the reason that the worst is usually what happens. A lifetime of unfortunate experiences can tend to inhibit the social imagination. But that impairment is there from the start, rather than being something that is learned or acquired by way of experience. 

It is usual for individuals diagnosed with ASC to experience difficulties in all three areas of social interaction, communication, and interaction. The particular ways in which these difficulties may manifest themselves, however, vary enormously. Always, we are dealing with particularities within a common condition. 

I shall explain these characteristics in greater detail as I go on. I would also refer people to my other writings on this site, which go intocharacteristics in great depth.

In addition to the triad of impairments it is also common for individuals with ASC to experience difficulties with processing sensory information, have or develop co-occurring conditions such as ADHD, anxiety, depression, or a learning difficulty. The upshot of all this is that those with ASC experience the world very differently to neurotypical people. For neurotypical people trying to understand the nature of this difference, I would ask them to imagine being left-handed in a world built by and for right-handed people and then magnify the difficulties to the power of a thousand and three. You feel always like a stranger in a strange land, an exile in your own home, engaged in a constant and seemingly endless search for being and belonging. It is no wonder that my favourite text from the Bible is Isaiah 66: 1:

This is what the LORD says: “Heaven is my throne, and the earth is my footstool. Where is the house you will build for me? Where will my resting place be?

I am still asking, and still searching.

Characteristics of ASC

It is worth delineating the characteristics of autism adumbrated above in greater detail, enabling people to see more precisely the extent to which they or their friends, family, and colleagues fit, or not as they case may be. As I pointed out earlier, individuals with ASC are affected to very different degrees in a variety of different ways, hence the term 'the autism spectrum.' Since the autism spectrum is broad, each particular individual with ASC may display all or only a few of the characteristics identified with the condition, each to a different extent.

ASC is characterised by impairments in:

Social interaction

Social communication

Social imagination / Rigidity of thinking

Repetitive Behaviours

Special Interests

Sensory issues

1.Social Interaction

Individuals with ASC may: 

• exhibit a marked preference for activities that are undertaken alone; 
• be receptive to approaches only from people with whom they are very close; 
• appear awkward in social situations; 
• may refuse comfort when in distress; 
• struggle to take turns in conversation, either talking too much or not at all; 
• have a poor understanding of social rules and conventions.

Human beings are social beings. From very young, individuals seek care and attention from others and develop an interest in others, coming to enjoy interaction with others - sharing, playing, chatting withothers, learning the social protocols of give-and-take and taking turns. This is how people learn to engage in successful social interaction. Individuals with an ASC find such social engagement and interaction with others challenging, and adults receiving a late diagnosis will declare that they have spent a lifetime struggling with it. I was struck by the extent to which my assessment interviews focused on my early years. I had a wealth of examples to offer from my adult life and was somewhat frustrated by the emphasis on my early and formative years. I now see the reason: ASC is something you are born with, something that manifests itself from a young age. Late diagnosis is problematic, however, to the extent that those asking for referral late in life will have somehow managed to mask their difficulties so successfully as to evade detection. They may still be difficult to pick up. It was the continuation, indeed accumulation, of problems later in life that finally forced me to investigate further, and it was these that I was concerned to talk about. The fact is, though, that my assessment interviews did indeed turn up behaviours on my part that indicated the presence of ASC. Throughout my school years I have seemed distant and remote, have appeared to be somewhat isolated, tagging on with odd others rather than being the centre of friendly attention. I was also somewhat uninterested in others' interests, and struggled to see things from another's point of view. I preferred my own interests to their interests. I also came out rather poorly when it came to sharing. I defended myself by saying that when you have little you tend to cherish it, look after it, and keep hold of it. But the fact remains that I was horrified at my mother's generosity at sharing my things with others. Even if I counted some of those others as friends, I never felt so friendly as to give them any of my treasured possessions and bear the scars of their loss to this day. It should, perhaps, come as no surprise to learn that individuals with ASC can often seem remote and isolated, struggling to make friends and maintain relationships. I would say that many may like being sociable, on their own terms, around their own interests, but don’t quite understand how such sociability is achieved and maintained and don’t always do it right. I am hugely sociable when people talk about the things that interest me; I am less keen when the topic of conversation moves to the things that interest other persons.

2. Social Communication

Problems with Verbal and Non-Verbal Communication

People typically employ a variety of methods of communication in relating to others, from speech to facial expressions and body language. Individuals with ASC can struggle with both verbal and non-verbal communication, with the level of impairment varying from one individual to another. Whilst those with a severe learning difficulty may have little or no verbal communication, those who use a high level of language may nevertheless struggle to receive language of a similarly high level from others. They may also have difficulties understanding facial expressions, gestures, and body language. Difficulties such as this can have a detrimental impact on relationships of all kinds, social, professional, and sexual, harming a person's employment situation and social life. Frankly, you can end up living in a wasteland - a non-person who exists nowhere outside of your own imagination.

Specifically, an individual with ASC may: 

• have limited or no speech; 
• often use words and phrases inappropriately and out of context; 
• be unresponsive when addressed; 
• be better at using language than understanding it; 
• not understand or misunderstand figurative language; 
• talk at people rather than with them; 
• repeat the words and phrases of others (echolalia); 
• fail to make eye contact or stare too intently; 
• fail to appreciate the need to communicate information; 
• fail to communicate feelings by way of facial expressions and body language; 
• rarely understand or use gestures.

3. Social Imagination.

Individuals with ASC may: 

• become distressed by even the slightest changes in familiar routines; 
• be resistant to change; 
• require and yet have constant difficulty with planning, preparation, and organisation; 
• struggle to follow verbal instructions or directions and tend to insist that these be written down; 
• may insist on imposing their routines on others; 
• resist new experiences, such as trying different food and drink, visiting new places, going to social events; 
• be resistant to even the slightest deviation from the usual way of doing things; 
• find it difficult to anticipate what others are going to do, and fail to understand why they would want to do it; 
• say things that may upset others and not understand the reason for the upset. 'Truth trumps feelings' is a common defence of the socially unacceptable, an attitude that works well in a science lab, but not in social company; 
• often pay particular attention to unusual details whilst failing to see the bigger picture; 
• engage in extreme behaviours in order to avoid others/things/experiences/people/social life; 
• find it difficult to learn from experience and hence can make the same mistakes over and again; 
• panic or breakdown if things do not go according to plan;
• (tend to think that nothing in life ever goes according to plan).

Life is what happens when you are busy making plans.

Social imagination helps us to understand others and the world. People typically use social imagination in order to predict the responses and perspectives of other people, planning our days and working out what needs to be done to accomplish social tasks and resolve problems. Social imagination enables us to be flexible in our interaction with others in ever-changing social contexts, avoiding conflict and being sociable.

Difficulties with social imagination can make the world feel like a very alien and uncertain place for those with ASC, causing them to establish and adhere rigidly to set routines and patterns that are predictable and give a sense of being in control. Individuals with ASC can express a marked preference for sameness, repetition, and familiarity and may be extremely uncomfortable with the unpredictability of change, people, and events.

4. Repetitive Behaviours

Repetitive behaviours and strict adherence to routines are a common feature of ASC. 

The term repetitive behaviour describes specific types of unusual behaviours that may strike neurotypical people as odd, but which are quite common to those with ASC. This is often referred to as 'stimming,' which describes self-stimulating behaviour which is pleasurable and calming, bringing a sense of tranquillity and control in an otherwise chaotic world.

Why Repetitive Behaviour?

Many come to be aware of the reaction of others to their behaviour and come to monitor and control it in the social environment, limiting it to ‘safe’ spaces, at home or come other private place. There may be a variety of reasons as to why individuals with ASC engage in repetitive behaviour. Whatever kind of repetitive behaviour a particular person may engage in, it is motivated by the common need to find peace and stability a world that is experienced as chaotic. Repetitive activities are a form of self-regulation, by which the individual seeks to control or overcome stressful situations and events and attain a degree of calm and certainty. Such behaviour offers individuals suffering stress an escape route; some may even find such behaviour pleasurable. This behaviour is not to be stopped forcefully, unless it is harmful to self and/or to others. Many repetitive behaviours are obvious while others are more subtle and hence difficult to detect. These behaviours come in many forms, and tend to be undertaken when a person is stressed. They become socially noticeable when a person engages in them excessively. At this stage, such activities can come to interfere with normal life. 

Managing repetitive behaviour

If the behaviour is causing, or likely to cause, harm, then seek referral to an Occupational Therapist, who might be able to help reduce or change these behaviours. Such behaviours often indicate the presence of constant anxiety, with any increase in them indicating raised anxiety levels. Such a condition is poor for mental and physical health and its causes need to be identified and addressed.

5. Special Interests

It is common for individuals with ASC to develop a fixation on things, places, people, animals, and events. Anything! This can be a positive thing, since they may also develop an urge on the part of those with AS to share their area of expertise/obsession with others, creating opportunities to socialize and bond in ways with which they are comfortable. Everyone, of course, has a favourite interest, hobby, or pastime which they engage in and enjoy. The difference is that whereas most people do not let their particular passion  interfere with their day-to-day activities and responsibilities, individuals with ASC can tend to becomeabsorbed in their ‘special interests,’ making them their whole life, postponing normal life indefinitely. I just called it 'research.' Whenever my dad drew my attention to important jobs to be done, like preventing the house from falling down, I would say that 'I'm busy' and promised to get round to things as soon as I was finished. 'You're always busy!' he, quite rightly, objected. 'Always busy, never finished' sums up my life under the sway of essential research/special interests. Not the least attraction of these special interests is that they rarely involve the presence of another person, or do so only indirectly, at a certain remove. They are solitary rather than social activities and take place in safe, controlled, and closed environments – the alternative reality of one's own world. 

Engagement in such special interests can take up a lot of time, time normally given over to engagement with others and in social activity. Over a period of time, this activity can become repetitive and undertaken with such rigidity as to become difficult to break or change. At this point, behaviours may become so hardwired as to require behavioural therapy to change. Whilst interests may change over time, the behavioural pattern tends to remain the same, with one obsession pursued to extreme lengths being replaced by another. The tendency to engage in special interests begins in childhood and evolve over time to more adult preoccupations. I went from Elvis to philosophy (or, more accurately, I went from Elvis to philosophy, Françoise  Hardy, and Elvis). 

As is the case with repetitive behaviours, individuals can tend to become absorbed in their special interest if they are suffering stressful events or feeling anxious. At the same time, there is a greater depth and passion with respect to special interests than to repetitive behaviours. Individuals with ASC come to be consumed by an uncontrollable desire to immerse themselves in 'special' activities precisely because their interest is genuine and their enjoyment and satisfaction real. Tim Page called this right:

'”Social disability” does not begin to sum up my lifelong history of insomnia, anxiety, depression, cluelessness, and isolation … Nor, in all modesty, does it address the singleminded, fiercely exclusive energy I can bring to a project that has captured my attention, the immersion in an otherworldly ecstasy that music, writing, and film provide, and the very occasional but no less profound joy in my own strangeness.' 

Whilst each AS person's special interest and pleasure is particular to them, the ecstasy by way of immersion is common. I'll go with the music and the writing and just replace film with two other essential f's: football and Françoise Hardy. That said, I do have a website dedicated to Elvis and another one to Queen. I have many special interests. I am very broad-minded when it comes to narrow concerns. The obsessive pursuit of the things that interest me remains the same, and absorbs the bulk of my time, to the detriment of social living. For years – decades – I told others as well as myself that I will join in playing the social game one day, as soon as my preparations were complete. As the years passed, those others passed with them – and I'm still telling myself that one day I will play the game. In the meantime, I have some interesting things to be getting on with. 

It should come as no surprise that when I made the biggest effort to play the social game I ended up spending years in academic research. I remember the day when I had been accepted in Manchester to study for research degree well. As I walked through the streets of a sunny Manchester, I smiled as I told myself 'I've made it, at last, I have a place in society.' It was my 30th birthday a couple of days later, and I was worried that adulthood had passed me by. Except that university is not society, but something of a haven from 'the real world.' I came to find that research is one of the most unsocial things you could ever possibly do. In fact, in my dedication to my work, I gave up the few social activities that existed in my life, watching TV and going to the football. That may not sound like much, but they involved things of common interest that I could talk about with others. Far from 'making it at last,' I had merely confirmed my isolation from others by taking it to another level. Spending large amounts of time engaged in an activity or activities organised around a special interest invariably leads to social exclusion and isolation. The positive side to the pursuit of special interests arises when such a pursuit can be rendered more socially functional and productive, even leading to employment or a career. Many autistic people have gone on to develop long and successful careers from their special interests. But beware of doing as I did. I thought that by entering into academic research that I, too, had become functional and productive and that my social problems were now over. I had found my vocation – and yet I had never been more alone and more isolated than I had been when undertaking research. I was successful, but who knew and who cared? 

But it was good preparation for a career in academia. One day, having earned my spurs, I would become a lecturer. I told myself. I avoided all opportunities to take classes that came my way, for the reason I hated public speaking and dealing with students. So that promise that one day I would become a university lecturer was idle from the very first. For preparation, read endless postponement.

But, yes, in general terms, a keen interest in a specific subject or topic can help socially challenged individuals overcome their difficulties and inhibitions, causing them to reach out to like-minded others in the 'real social world.' In the process, they can build social skills and confidence and become socially functional and productive. I became an expert on Hegel and Kant and found it to be of little use and even less interest in society. It's not much of an ice-breaker at parties, and even when it is it earns you the company of interminably and insufferably boring people.

Managing Special Interests:

Offer support to those absorbed in their special interest activities, but see if these interests can be used as motivators leading outwards into social activity. 

Don't make fun or be critical of an AS person's special interest. Anyone who failed to accept my thesis that Elvis is the best there ever was and ever could be was destined to be crossed off my Christmas cardlist. 

Monitor special interest activity, paying particular attention to the extent to which it has started to seriously interfere with the needs and responsibilities of day-to-day social living. Looking back, I can see now that I slipped under the radar precisely on account of the inherently anti-social nature of academic research. By the time my research period had ended, my behavioural patterns had become hardwired – I couldn't move on and no-one was strong enough to move me on. I was destined to keep going 'back to school,' which is bitterly ironic given the extent to which I hated school. Academically, I was successful and had the certificates to prove it. Where's the problem?

My advice to those who choose to undertake academic research is clear and simple: maintain at all costs your social activities and connections with others, resist the temptation to become absorbed 100% in your research in a concern to finish, enjoy time out and time off, and plenty of it. One of the worst things I ever did was give up my season ticket at Liverpool football club, devoting all my time and money to doctoral research. 

Look for the ways in which a special interest could be developed into a socially useful and productive activity. Look for more socially meaningful engagement. (I was really on stony ground here: it's hard to imagine a glee club composed of lovers of Hegel and Kant - although I am sure it can't be as bad as anything to do with Schopenhauer). See how the special interest can be expanded socially, drawing the individual into relation with others. Frankly, from my  own perspective, that period of philosophy and academic research was a social dead-end. My interests in football and music were much more socially promising. I had a long spell as a record collector, venturing out to specialist vinyl stores across the north of England as well as telephoning – I, who never normally used a telephone – record shops all over the country. It's a great little community and I loved every minute of it. The only thing I will say is that it tends to be males who become obsessive record collectors. So I wasn't really expanding my horizons too much. 

Those who consider special interests and activities to be pointless and unproductive need to remember that these might be the only things that give a particular AS person pleasure and a sense of meaning and belonging. I was very happy among my fellow football and vinyl fans.

6. Difficulties with Sensory Processing

Sensoryprocessing refers to the way individuals experience their environment, both people and surroundings. In addition to the four familiar sensations of sight, hearing, smell, and taste there are three more senses to take into consideration: balance (vestibular), body awareness (proprioceptive), and touch (tactile). We experience a large number of sensations at any one time and develop our own ‘sensory preferences.’ In determining the range of responses that may be considered ‘normal,’ there is no objective right or wrong. Most individuals will make their choices consciously and adapt their lifestyles according to their particular preferences. These everyday sensations and how we experience them affect the way in which we interpret the world around us. 

There are many examples:

• Visual - staring at lights, blinking, gazing at fingers, staring at the corners of ceiling; 
• Auditory - tapping fingers, snapping fingers, grunting, humming; 
• Smel

l - smelling objects, sniffing people (I once worked in an office where a woman openly sniffed the men in order to guess their after-shave or whatever it was they used – I used nothing and she kept away. The men found her completely unnerving - some people do the same, but much less obviously); 

• Taste - licking objects, placing objects in mouth; 
• Tactile - scratchin

g, clapping, feeling objects, playing with strings, hair twisting, toe-walking; 

• Vestibular - rocking, spinning, jumping, pacing; 
• P

roprioception - teeth grinding, pacing, jumping, banging against hard objects.

Individuals with ASC often find that their senses are working overtime, with their brain receives too much information through the lack of filters (hypersensitive), or working hardly at all, with their brain not receiving enough information (hyposensitive).

For individuals with ASC, the various sensory perceptions can be the cause of distress, anxiety, fear, confusion, and even physical and mental pain. This can result in behaviours that can strike neurotypical people as a cause for concern, as the individual attempts to block out what is causing the problem. I can vouch for this personally, and with many examples. To take just the one, I was a guest in a friend's cabin at a time when repairs were being done. I was already uncomfortable with the seemingly endless and ubiquitous presence of the indefatigable workman, but was tipped over the edge by his constant banging. I took myself to the smallest room available, tried to drown reality out with loud music over the headphones, and was still cringing against the wall with my hands tight against my ears. I felt it all as a violation and the pain was real and physical. This, my friend told me, was 'not normal.' 

Tick those that apply:

Hypersensitive Hyposensitive

Dislikes dark and bright lights 

Moves fingers or objects in front of the eyes

Looks at minute particles, picks up smallest pieces of dust

Covers ears

Dislikes having their hair cut

Resists touch

Avoids people

Runs from smells

Moves away from people

Craves certain foods

Uses tip of tongue for tasting

Places body in strange positions

Difficulty walking on uneven surfaces

Turns whole body to look at something

Becomes anxious or distressed when feet leave the ground

Fascinated with reflections, brightly coloured objects

Makes loud rhythmic noises

Likes vibration

Likes pressure, tight clothes

Enjoys rough and tumble play

Smells self, people, and objects

Seeks strong odours

Mouths and licks objects

Rocks back and forth

Spins, runs round and round

Lack of awareness of body position in space

Bumps into objects and people

There is a need to bear in mind that when 'normal' people are tired, emotional, stressed-out, unwell, or in pain, their tolerance levels are much diminished. Everyone who has been there – and that is everyone – will know how uncomfortable this state is. This is the normal condition of people with ASC, suffering as they do from a permanent impairment in the ability to tolerate sensory stimuli. There is therefore a need to identify a person's sensory issues and understand the various ways in which they seek to cope with them. The observation it's 'not normal' is a start. Finding out the cause and offering support and understanding is far more helpful than asking people engaging in coping strategies to stop.  

There are a number of things that may be helpful, as well as things which may be challenging to AS people. But lists are only as good as the observations of the people who monitor behaviour with a view to being helpful. Monitor and add to the list as you go.

Individuals with ASC suffer from sensory mixing and overload as a result of lacking internal filters, brakes, and editors. To a person with ASC the world can be wholly and immediately present, with the brain having to try to process everything at once without the benefit of filtering. I describe it as akin to entering a building and flicking a light switch only to find every light in every room coming on at once: with every room visible, you are left having to decide in an instant where you should be. Looking into the building, you will see everything at once, creating the urge to be everywhere at once. In this mixing, the unimportant joins with the important, with background and foreground information becoming one indistinguishable whole creating the one indistinguishable noise in your head. And in all this time, people are awaiting your response. To them, you appear slow; they do not realize that you are working at high speed to process a thousand times and more the information that they, with their filters and editors in place, are processing. The result is a sensory mixing and overload that causes meltdown and shutdown. 

The result is fear, stress, and anxiety, causing an attempt to shut sensory input down completely. Being presented with too much information to be processed at once makes it impossible for individuals with ASC to break the whole picture - the building - down into its discrete elements - the different rooms. All the lights are on and you see everything at once. Individuals with ASC will struggle to relate whole and discrete parts, trying to process different things at the same time. This makes it difficult for them to process the information they receive, leading them to focus on only certain discrete parts, leaving them without sufficient memory to process everything they need to process. The problem relates to the way that the lack of filters and editors makes everything present immediately at once, meaning that the significant information is merged in which background noise and distractions. This is too much information to be processed.

Often, the senses can come to be distorted, with the result that the person with ASC comes to see, hear, smell, taste, and feel something that is very different to everyone else. The experience can be so overwhelming that one, many, or all of the senses of the person may come to ‘shut down;’ this is an attempt to cope with the impossible demands of sensory overload. One sense may shut down in order to allow the other senses to work better in the attempt to cope; some senses will therefore be used to compensate for the shutdown of others.

These things might 

help me…

These things might

challenge me…

Look to the side of my face or over my shoulder when you are interacting with me

Address what you are saying to a nearby wall rather than directly to me

One person talking to me at a time 

More than one person talking to me, other people’s conversations

Neutral, sterile odours

Plain clothes

Dull coloured clothing

Uplighters

Red or green bulbs

A quiet environment

Quiet personal care

Consistency

One thing at a time

Knowing what is happening next

Perfume, aftershave or other scents

Patterned clothing

Bright coloured clothing

Striplights

Bright or white light, bright sunshine

Kettles, engines, traffic sounds, phones

The toilet flushing, running water, fans, phones

Different people responding to me in differentways

Being bombarded by a lot of information

Unpredictability and chaos

Direct eye contact

Direct communication.

There is plenty hearthat might look incredibly odd. That's just the way it is. 

To take just a coupleof points:

“Look to the side ofmy face or over my shoulder when you are interacting with me

Address what you aresaying to a nearby wall rather than directly to me.”

How utterly bizarre. Most people, I would guess, would find such instructions in interpersonal exchange thoroughly off-putting. But I understand exactly where they are coming from. I remember in a tutorial at university when I was speaking at length on something or other. One of the young ladies in the class was sat just to my right. As I spoke I suddenly became aware that she was watching me intently. I obviously held a fascination for her in some way. She may have been impressed by my towering intellect, my eloquence and learning, my handsome good looks, or my swagger and style. I have no idea. Rather than encourage her interest I made a point of not liking being watched as I spoke, mixing my admonition in with the historical point being made without breaking stride. The poor girl  put her head down and never showed interest again. It was a public rebuke that, frankly, intimidated others and deterred them from getting close. But the truth is I hated public speaking and felt terribly vulnerable and exposed when acting publicly. Looking back, I would happily exchange those extra marks and grades I earned with my puritanical approach for a good long one-to-one conversation with this fascinated young lady. 

Tips relating to sensory issues:

Observe the behaviour of the person with ASC and attempt to identify any sensory issues they may have — the more you learn about people, the easier it will be for you to support them. The same applies to the person themselves – self-knowledge is key to self-care.

If a person with ASC is showing distress and acting in a way that is 'not normal,' then consider the extent to which this behaviour is caused by sensory issues. Dim lights and reduce noise levels and monitor for improvement.

Be aware that a person with ASC may only be able to use one sense at a time. I'll add a personal observation from my own experience here, paying particular attention to facial expressions and eye-contact. My dad's blank expressions that so unnerved me when I was talking to him did not mean, as I thought it did at the time, that my dad was not listening. In my impatience,  I would frequently demand a response from him, and he would attempt to defend himself by saying 'I'm listening!' I would never stop talking, and yet demand a verbal response from my dad, who, it is now clear, was focusing hard by using just the one sense – hearing – in order to cope with the flood of information coming his way. I would hit him with a torrent of words, long, complicated words and concepts at that. Insufferable and interminable.

Once the issues which trigger sensory problems have been identified, avoid these where possible and substitute others where appropriate.

Make a quiet time / space available for relaxation and recharging. This is one of the reasonable adjustments indicated in the recommendations at the back of my AS Report. To date, not a single employer or employment adviser has read these recommendations. Make sure people read your report and take your diagnosis into consideration. And take self-advocacy seriously. Because in my experience outsourcing responsibility here can place you in stressful situations subject to stressful events. 

Other than that – earplugs and headphones are good for bracketing out reality and enfolding you in your own world.

7. ASC and Other Disorders

Some people with ASC may also have or come to develop additional difficulties or disorders, which are not directly part of their ASC, but which may result from having to deal with the unaddressed and deleterious social consequences of that ASC. These may be other neuro-developmental disorders that have been present from childhood (and may have been missed) or issues that have developed in adulthood as a result of problems arising from ASC. Individuals with ASC are not excluded from problems with mental and physical health. It seems that those who receive a late diagnosis of ASC can tend to have developed long-term health problems grace of the struggles and challenges they have faced with their undiagnosed condition. Clearly, in such cases, professional advice should be sought whenever symptoms of certain health problems manifest themselves. For my part, it was persistent problems with physical health – two chronic conditions coming at me like successive hammer blows – which led me to search for a deeper cause. I considered myself to be fairly fit, and so these health problems struck me as anomalous. Researching the subject, it does appear that individuals with ASC can suffer with certain conditions more frequently than others. The only thing to add here is that ASC is not necessarily the cause of these other conditions, but that having to deal with the stresses brought on by an undiagnosed condition, particularly being at cross-purposes with 'society' and others, can bring on other problems. Having removed the physicalcauses of my latest ambulance dash to the hospital in early 2019, I went to my doctor insisting that my problem was caused by 'psycho-social stress.' She suggested Asperger Syndrome and asked me to go away research the condition. My road to referral and diagnosis had begun. It took physical illness to start the process. 

Some of the disorders associated with ASC are:

Dyspraxia;

Obsessive Compulsive Disorder (OCD);

Attention Deficit Hyperactivity Disorder (ADHD);

Dyslexia;

Anxiety;

Epilepsy.

I could write another post entirely on anxiety (in fact, I have done).

Communication

The ways in which communication is impaired on the part of the personwith ASC varies greatly from person to person. Communication issues are more obvious in the cases of those who suffer from severe learning difficulties, but are present among those who are on the higher functioning end of the spectrum. The apparent level of language can sometimes be misleading, with some being excellent in using language but poor in receiving it.

Impairments in communication can result in problems in giving and receiving information, both on the part of individuals with ASC and those discursively engaging with them. Adapting communication approaches inlight of awareness of these difficulties can go a long way towards ensuring that individuals understand clearly the information that is being elicited from them, thereby ensuring the most accurate response.

Individuals with ASC may often have a very literal understanding of language. Figurative language may thus be interpreted literally, which can be a cause of considerable anxiety, confusion, or misunderstanding. As I wrote above, I had recent experience of this in my last job, where I was told to 'strip the beds' in a number of hotel rooms. This was a clear example of why it is necessary to make sure, when issuing instructions to a person with AS, that the person receiving instructions has understood. In the list of recommendations at the back of my AS Report, it says in the plainest of plain English that instructions should be given clearly and simply to me, with no ambiguity, and that  I should give the instructions back to ensure that I have understood them properly. 

No. One. Reads. AS. Reports.

I received quick instructions which seemed clear to me as I received them. When I reached the rooms I realized that ambiguity created great scope for interpretation. To me, it made no sense to just take the linen and leave the pillows, the duvets, and the mattress covers. 'Strip the beds' meant 'strip the beds.' If the linen was all I was required to take, then surely the manager would have said 'strip the beds of the linen.' 

Not. My. Fault.

The entire episode caused great distress on my part. Immediately, a week into my new job, I saw all the same old misunderstandings happening again, with the likely inevitability of more to come with every passing week. I suffered meltdown and worse and left the job.

If only people would make the effort to listen and learn, life could be so much easier and so much better for one and all.

Figurative language involving idioms, metaphors, and similes should be avoided when interacting with someone with an ASC. But here's the problem with that recommendation. I have a very high standard of English and understand perfectly what that means. Any number of managers, employers, and advisers I have known over the years wouldn't have a clue what that means. 

But here's an important point to grasp in relation to that observation: 

Many individuals with ASC have a higher level of expressive language (the language they use) than they do of receptive language (understanding the language you use). It cannot, therefore, be assumed that such individuals can understand language that is at the same level of complexity as the language they use.

Long, complex instructions and statements can often be confusing, with essential information being drowned out or rendered ambiguous by additional information.

Most people will alter the tone, pitch, volume, and speed of their voice according to the particular social situation or event, and will do so in order to convey emotion or stress importance. Some people with ASC find it difficult to both do this and understand this. They may find it difficult to interpret changes in voice patterns and understand the meaning they attempt to convey. For them, such changes can incite anxiety since it is often unexpected and can cause sensory issues. There is a need to be clear, calm, and consistent when addressing individuals with ASC, and explain things in a way that will be understood rather than rely on changes in voice patterns.

The same points apply with respect to eye-contact, gestures, facial expressions, and body language. Many individuals with ASC are distinctly uncomfortable with making and maintaining eye-contact. Since a friend drew my attention to the way I avoid eye-contact, I have developed a technique of glancing close to the eyes whilst looking slightly to the side of them. That's my attempt at making the effort. Many individuals with ASC have difficulties in conveying meaning by way of facial expressions as well as interpreting the facial expressions of others. They may, therefore, tend to avoid communicating their feelings by way of facial expressions and may also appear emotionless and unaffected in response to information you give them, even though this may not be the case. I would refer to my own Zen-like calm when adopting a neutral/indifferent facial expression in conversation with others, whilst expressing my frustration at a similar seeming unresponsiveness on the part of my father. 

The same is true with respect to body language. People often convey their intentions, wishes, demands, and feelings by using their bodies in various ways. Individuals with ASC may interpret these non-verbal messages incorrectly or either not notice them or pretend to not notice them, for fear of having to respond and risk misinterpreting them (I'm talking about myself here. Whilst I may notice things, I don't necessarily understand what they mean and often switch to neutral for fear of their implications. So I feign ignorance and await further information for me to further misinterpret/ignore).

It will be difficult for an individual suffering from sensory issues to focus on what you are saying when the environment in which social interaction takes place is busy or chaotic. Time and again in recent years I have had to suffer one-to-one meetings discussing personal issues in social environments that I normally seek to avoid. Instead of addressing the issues I would want to raise, I normally perform by way of a public mask, in an attempt to escape social engagement as quickly as possible. Not surprisingly, not one of the issues I have sought to resolve by these meetings have been resolved. The entire approach seems to be geared in favour of the confident, the assertive, the extrovert, the already or soon-to-be successful. People with issues remain people with issues. 

Since individuals with ASC may require more time to process information, pause, give that time, and check that they have understood by asking them to repeat the information back. It says so very clearly in the recommendations for employment at the back of my AS Report. Employers, I find, don't read. Read it to them!

Given that individuals with ASC can suffer from sensory mixing and overload, make an attempt to reduce the sensory information that may come their way (sounds, sights/lights, smells) before engaging them.

Avoid using generalised questions since individuals with ASC tend not to offer more information than they are asked for. Generalised questions will meet with little response and/or misleading answers. I tend to say the bare minimum in an attempt to bring social encounter to a speedy end. In no time, I come to realize that my responses have been not merely inadequate but misleading, conveying an impression that is precisely the opposite of what I know to be true. Many individuals with ASC express a clear preference for communicating with others via email, text, or in writing. I do. I address the world with what I call my 'writing voice.' And the situation is nothing less than  frustrating. Time and again I tell others of my AS and of my preference for written communication. Time and again said others express sympathy and feign understanding. And in the overwhelming number of cases, said others avoid written communication and seek to contact me via the phones I loathe. 

Supporting communication:

• When engaging persons with ASC, make sure that you have their attention. Call their name and seek recognition and response;
• Minimise sensory distractions such as noise, bright lights, and busy rooms;
• Use a clear, calm voice;
• Keep things short, simple, and straightforward;
• Allow the person sufficient time to process information and take time tocheck that they have understood. Ask him or her to repeat the information back;
• Avoid using idioms, metaphors, and similes;
• Use facts to explain things, avoid complex analogies, and don't use sarcasm;
• Don’t rely on changes in voice patterns, facial expressions, gestures, and body language.
• Ask specific questions to elicit specific information;
• Do not overload the person with lots of verbal information;
• Allow persons time to express their view and be patient. Increased anxiety in a social context may reduce an AS person's ability to communicate verbally.

Anxiety

Anxiety is one of the most mentally and physically debilitating issues persons with ASC can suffer. Stress is normal and natural. Good stress incites mind and body to take appropriate action. The problems come when stress becomes a constant companion. When this happens, stress is in danger of becoming anxiety, which in turn can become a chronic condition that itself can cause chronic health conditions. Many individuals with ASC will experience anxiety in the course of their lives.  For many, anxiety is a chronic issue that comes to affect every aspect of their lives in a way that is detrimental to health. It is not the ASC that directly causes chronic physical illness but the constant anxiety grace of the constant stresses and strains that comes from living with ASC. Anxiety can therefore be the cause or trigger of other behaviours and issues that impact negatively on everyday  life. Some individuals with ASC may struggle to articulate their anxiety, or may not even understand the ways in which anxiety is causing the physical symptoms they are experiencing. 

For my part, I identified the role of anxiety in my problems with physical health before the doctors did. It was my telling the doctors about this anxiety that, in time, led them to suggest AS on my part. Others may not be as clear as I was in this and may instead engage in behaviours that serve as an indirect way of expressing their anxiety. I called it by its name; others may take a different approach.Certain behaviours may be an attempt on the part of people to avoid situations and encounters which give rise to anxiety, attempting to eliminate everything that is likely to cause stress.

Becoming aware that someone is suffering from anxiety is the first step in seeking to help them. Identifying the causes of anxiety is the next step, before identifying possible remedies. The causes of anxiety are many, making it difficult to isolate and eliminate them. But all these causes seem to possess a common root. In one of my anxiety classes the tutor in charge asked us what the principal cause of anxiety is. 'That's just got to be people,' I answered. I was right. Everyone experiences anxiety. Anxiety is as much  normal part of everyday life as are people. Whilst people react to stressful situations in ways that are personal to them, the symptoms of anxiety are often similar. The people who cope better with stressful situations and events are those who are able to recognise what anxiety is and what its causes are. This is something that persons with ASC find difficult to do.

Some of the behaviours you may see someone who is suffering from anxiety are: 

• aggressive behaviour 
• becoming withdrawn and resisting any interaction with others 
• avoidance 
• increase in repetitive behaviours 
• self-injurious behaviours 
• restlessness and over-activity 
• limited attention span 
• low mood 
• using alcohol to cope with anxiety 
• becoming distressed

Individuals with ASC can be anxious about more than one thing at a time, which in turn can lead to high levels of anxiety and a greater incidence of associated behaviours.

Individuals with ASC can experience anxiety for a variety of reasons, amongst which are:

• Literal interpretation of situation 
• Does not know/ understand rules 
• Sensory difficulties 
• Changes in routine 
• Difficulties with communication 
• Anxious about failure 
• Unsure what is going to happen when meeting strangers 
• lack of structure to the day 
• being given too many choices 
• not being able to communicate their needs/lack of understanding 
• changes in routine 
• new activities or places 
• experiencing unpleasant sensations, eg dog barking, flashing lights, crowded and noisy environments, overpowering smells 
• transition from one activity to another — even small transitions 
• physical causes such as pain, itching or discomfort 
• trauma -  remembering unpleasant events, for example, having a haircut, seeing the dentist or doctor, which when being asked to repeat makes them anxious.

“Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds and sights. There seem to be no clear boundaries, order or meaning to anything. A large part of my life isspent just trying to work out the pattern behind everything. Set routines, times, particular routes, and rituals all help to get order into an unbearably chaotic life.” (Joliffe, 1992, p.16).

In order to manage and reduce their anxiety, the AS person’s greatest ideal and dream can become the peace and tranquillity of order, routine, stability, and predictability. Some individuals with ASC may want to have complete control over situations (and people) or take part in things only on their own terms.

I like lists. I was drawing up lists and sketching plans and tables long before I was diagnosed with ASC. That revelation should come as no surprise. People with ASC will understandably develop any numberof coping mechanisms. Lists are like a comfort blanket, something torefer back to and rely upon. I like to write reality down and then read it back. I make lists for everything. Lists help you to orderand organise your life. It also feels good to tick things off a list, keeping a score of little achievements and victories in the battle to survive daily life.

Helpful Tips 

• Consider that anxiety is the cause of behaviours and symptoms; 
• keep a journal, record issues and events, write your problems down and reflect upon them, see if you can identify what has caused anxiety; 
• Reduce sensory triggers in the environment; 
• Adapt your communication appropriately; 
• Use planners render the unpredictable predictable; 
• Use lists to organize activities and tick off what has been completed, considering them to be little achievements and victories to celebrate; 
• Undertake things as planned, be on time, avoid last minute changes if possible; 
• Seek and give warnings before activities are about to end or something is about to start. 
• Undertake at least some exercise, which can help to reduce physical symptoms of anxiety. 
• Seek professional help if symptoms persist and/or get worse. 

Social Skills and Relationships

Most people learn how to interact and communicate with others and make and maintain relationships and friendships as they grow up and go through life. Some aspects of this learning come by way of being taught by others, whilst others are innate and come naturally in the process of normal development. Many social behaviours develop by way of our expectations with respect to others' behaviour in relation to us. We give what we would like to receive from others; we say nice things to others because we like others to nice things to us.

Individuals with ASC do not develop these skills the same way, and may therefore struggle to understand social rules and protocol, failing to see the nuances of social interaction and communication, two of the three impairments in ASC. The third impairment, that of social interaction, may mean that a person with ASC struggles to predict how others think or feel, stating what they consider to be an objective truth without recognising the social offence. (A character trait which has come totake over a certain kind of politics, one that is baffled as to why it is electorally challenged, displaying marked authoritarian tendencies in response).

Difficulties in understanding social interaction and communication may mean that people with ASC can miss cues. Whilst the level of social skills varies from one person to another, impairments of any kind have a deleterious impact on the ability to make and maintain friendships, secure and keep employment, enjoy leisure activities, and enjoy a healthy and functioning life.

Some social rules and knowledge of social protocol and expectations can be developed through training and cognitive behavioural therapy. People with ASC cam learn to do what comes naturally from others, learning to understand what is expected of them in a social situation. There are many structured programmes that seek to develop social skills. At the same time, these social skills can be taught by those who are willing to offer support to a person or persons with ASC. Improving social skills can help individuals with ASC to develop and maintain social relationships, engage in social activities, and understand what is expected of them in social situations. All of this, in turn, builds confidence and reduces anxiety.

Family and Friends

Receiving a diagnosis of ASC in adulthood may come as a shock for some people, for others a relief. For my part, I felt an immense weight shift offmy shoulders when I had an explanation for the difficulties I have faced through life, and most especially for the misunderstandings that have strained relations with friends and family over the years.

Living with someone with ASC can be stressful on account of their special needs, their demanding behaviours, their frustrations, and their very different ways of doing things. Since ASC is a condition a person is born with and not something that is acquired or conditioned, all of this will have been apparent long before diagnosis is sought and received. More than likely this condition will have been the cause of a lot of stress and tension in the family home from childhood, having a negative impact on family members as well as the person with ASC. Looking back, I can now see the extent to which my undiagnosed condition put my mother and father, as well as myself, under immense strain. As a result, the problems of anxiety that can come to afflict those with ASC can also come to afflict those in close relation to persons with ASC. In response to this, it should be made clear that it is normal to experience feelings such as:

• Sadness Guilt 
• Relief Fear 
• Anger Frustration 
• Denial Grief

I would just make it clear that the weight of guilt is too hard and too unjust to bear. I can see how much worry I caused my mother and father, but in a very definite sense it was not me causing the worry, it was the stresses caused by my undiagnosed condition. Without knowing the causes of my failures and frustrations, there was no way I could have behaved differently. Obtaining the diagnosis has the benefit of changing relationships within the family for the better. Sadly, this happy ending is not available to me. I can now see the reasons for misunderstandings and the differences in the way I and others see the world. I could never understand why people didn't see what was obvious to me, and didn't accept my view of the world as the one and only true view. Life has become a lot easier and lot calmer now that I know that I have ASC. I just wish it had become easier and calmer for my mother and father, for they deserved nothing less for the unconditional love and support they showed to the very end of their lives. Others may get luckier and learn to live better as they learn together.

Tips for family and friends: 

• Consider contacting / joining a support group. 
• Talk to someone you trust and feel comfortable with about how you are feeling. 
• Make time for yourself and time to relax. 
• Learn about Autism — this guide is a good starting point. 
• Talk to professionals, write down any questions you have ahead of any meetings. 
• Remember you are not alone.