Asperger's Syndrome For Dummies

Introduction

Asperger’s syndrome is a form of autism spectrum condition that affects a person’s ability to communicate and interact with other people. As the term suggests, autism spectrum conditions are not a single thing but several closely related things. Like a rainbow, the autism spectrum is made up of a range of conditions, including Asperger’s syndrome (AS). And like a rainbow’s colours, identifying exactly where one condition ends and the next begins isn’t possible. Often, diagnosticians disagree about exactly which autism spectrum condition (ASC) to diagnose somebody with.

Because it’s part of a spectrum, it’s thus impossible for us to write a book solely about AS. At first, recognising the similarities between some of the conditions on the spectrum is difficult. This book helps you to understand why these conditions are grouped together, and also why people with these conditions can seem so different to each other. If you or those you care for have an ASC, we hope you find this book useful.

No one’s done a recent study of how common AS is. A study looking at the prevalence of all forms of autism in children found that 116 people in every 10,000 were on the autism spectrum (that’s roughly 1 in 100). A similar prevalence rate was estimated for adults with an ASC. These results suggest that more than 700,000 people in Britain have some form of autism. This number sounds a lot, but many specialists believe that some people on the spectrum, particularly adults and women with Asperger’s, are being overlooked, so this number is probably an underestimate.

About This Book

As well as being informative, this book sets out to be autism friendly. That is, we’ve written it using language and in a way that should be easier for people on the autism spectrum to understand. To achieve this ease of understanding we’ve had to allow for literal interpretation of language, black-and-white thinking, and difficulty with understanding humour. So, in complete contrast to most writers, we avoid elegant and clever descriptions in favour of direct, simple, repetitive language, and we try to make the For Dummies’ trademark humour clear and obvious. Most of the jokes and the passages in which we’re being a little light-hearted are indicated with a liberal use of exclamation marks.

We’ve written a book about AS, but it also covers other forms of autism that come under what some would call the patronising term higher-functioning forms of autism. Basically, what you can do in terms of learning, therapy, drugs, diet and everything else has to be individually tailored, no matter what the diagnosis.

If you want more detail on helping someone with lower-functioning autism, Understanding Autism For Dummies by Stephen Shore and Linda G. Rastelli (Wiley) may be more suitable.

Avoiding confusion over terminology

You may well come across quite a number of terms used to describe people with AS or another form of autism. Sometimes the terms can be used interchangeably, but not always. Collectively, they’re sometimes called autism spectrum disorders or autistic spectrum conditions. So let’s spell a few things out.

Pervasive developmental disorder, autism and autism spectrum disorder all mean the same thing (regardless of the number of hyphens you may see added in). The word autism is also used for what is, strictly speaking, called childhood autism. The term childhood autism is very confusing because adults can have it, so even doctors usually just say autism or classic autism when they mean childhood autism.

Diagnostic terms

The autism spectrum is usually broken down into several groups:

Childhood autism

Regressive autism

Childhood disintegrative disorder (CDD), which sounds really scary, but is very rare; many professionals avoid using this term and use the broader term regressive autism to include CDD.

Asperger’s syndrome (also known as Asperger syndrome, AS and Asperger’s disorder)

Pervasive developmental disorder—not otherwise specified (PDD—NOS)

Atypical autism

Personal terms

When people talk about themselves and their loved ones, they tend not to use the diagnostic labels but to call themselves Asperger, Asperger’s, Aspergic, Aspergian or Aspie so you’ll find all of these terms in books on autism and AS. Because Asperger has a capital letter, some people like to put Autie, Autist and Autistic on an equal footing. Because Asperger’s is a form of autism, some people with AS like to call themselves autie, autist, autiste (if they’re female) or autistic — they see the connection between all people with autism as more significant than the differences between the diagnoses.

You may be wondering why the Goth calls himself that. He doesn’t wear black, but even so, people have chosen to name him the Goth, and after the third time it happened he decided to adopt it as his name. More details of this story are provided in the About the Authors section at the front of the book and also in Chapter 6.

Our terminology

The existence of all these terms means we have to make a choice and also try not to offend anybody with the words we use — which actually is impossible. We choose to use the terms:

Asperger’s syndrome (which we sometimes abbreviate to Asperger’s or AS)

Autism spectrum condition (or just ASC)

Person who has AS or person who has an ASC

Person on the (autism) spectrum

Autist

Autistic

We make these choices because when you shorten Asperger’s syndrome to Asperger’s it’s logical, but to shorten Asperger syndrome to Asperger’s is not. The readers of Asperger United, a quarterly magazine by and for people on the autism spectrum, chose autism spectrum condition in preference to autism spectrum disorder, and person on the spectrum is one of the preferred phrases of the National Autistic Society. Sometimes when the Goth is writing from the perspective of a person on the spectrum, he uses the terms autist and autistic, because many people on the spectrum object to the politically correct person first language that uses phrases like person with AS. Instead of person with AS we sometimes use the term person who has AS, which is somewhat less offensive. Chapter 6 has more on political correctness. We do not intend to cause offence with any of the terms used in this book.

Offering a short explanation of the autism-friendly approach in this book

People with any form of autism have more problems with reading, language and understanding than most people, so we try to be clear in a way that people on the autism spectrum will understand. All For Dummies books contain humour, but because people on the spectrum find understanding whether or not something is a joke particularly difficult, we’ve taken special care to make it clear when we’re joking.

For those with visual problems, we’ve avoided using single quote marks where possible and use longer dashes (called em dashes) than is usual in modern books.

Conventions Used in This Book

We use the following conventions to help you get the most from this book:

We use italics for emphasis, to highlight titles of books and films (such as The Sign of Four by Sir Arthur Conan Doyle), and to draw your attention to new words or terms that we define.

We use boldface to highlight key words or phrases in bulleted lists like this one.

We use monofont for web and email addresses so that they’re easily identified.

We use sidebars — see Why sidebars are called sidebars for more on these grey boxes.

Foolish Assumptions

This book makes the following assumptions, which we hope aren’t really that foolish.

We assume that you have AS, another ASC, are the parent of someone with an ASC, or someone else affected by an ASC personally or professionally. We assume that you or the person you care for may not have a formal diagnosis, and even if you do, that diagnosis could be any condition on the autism spectrum.

Why sidebars are called sidebars

You’re doing it now. Reading a sidebar, that is. But it’s at the bottom of the page, not the side.

Originally, sidebars were used in magazines to enliven the text, and they were placed down the sides of wide magazine-style pages. So they were at the side and narrow, hence the name. To a lot of people on the autism spectrum, these features are just confusing and pointless, especially when the main text doesn’t tell you when to read them. However, they’re part of what makes a For Dummies book a For Dummies book, and here they’re shaded grey and appear at the top or bottom of a page. So some would say they should have a different name like topbars, but we’re going to stick with the traditional name here and make every effort to make sure that every one is referred to in the main text.

remember.eps Every sign and symptom of ASCs, such as poor social skills, is found throughout the general population, as psychologists say, and that’s everybody. What qualifies a person as having a form of autism is the sheer number of signs and symptoms they display. So, even though this is a book about AS, anyone on the autism spectrum will find it useful.

We assume you want to learn a lot about AS, including what it is and why it is (as far as anyone can tell), and that you want to be able to understand, or at least look up, the technical terms used by medical professionals.

How This Book Is Organised

This book is split into five parts, plus the contents, this introduction and the index. These last three elements are there to help you find exactly the information you need, without having to read the whole book. Each chapter has been written to be complete, so it doesn’t rely on information in previous chapters. Where a chapter does mention something which is described elsewhere in the book, we add a reference such as more on this can be found in Chapter 9. Nevertheless, we realise that many people with autistic traits are going to want to read the book from cover to cover, so we’ve attempted to arrange the chapters and parts in the most logical order. Here’s a brief explanation of what appears in each part.

Part I: Understanding Asperger’s Syndrome (AS)

We hope that what you need to start with is an overview of what AS is, the history of AS, its causes and what it’s like to have it. We go on to explain the biological causes and psychological theories of AS, how it’s diagnosed, how to obtain a diagnosis if you want to, and how to decide whether you want to.

Part II: Living with Asperger’s Syndrome

If you’re reading this book, you’re probably already living with AS! This part draws a picture of life from the point of view of people with AS: how to understand (and maybe even cope with!) family, friends, school, relationships, work, college and living independently. Part II also deals with self-advocacy, the benefits system and autism rights. This is an enormous subject area, but all the essentials are here.

Part III: Supporting People with Asperger’s Syndrome

You may need to support someone on the autism spectrum even if you bought this book because you yourself have Asperger’s. We try to cover everything you need to know to make that person’s life, and your life, better. From parenting a child with Asperger’s to managing stress, coping with sensory difficulties, managing other people, joining a support group and relating to people with AS — it’s all here.

Part IV: Discovering Therapies, Medication and Diet

Part IV covers the different approaches that parents and individuals can look into that may help with communication, social skills, behaviour and well-being. These approaches fall into three main groups: therapies, medication and diet. We provide an overview of each, along with pointers to further information.

Part V: The Part of Tens

Here’s the part you find in every For Dummies book. It includes three short chapters, each listing ten of something: helpful organisations, good things about AS, and famous people and characters who might have had AS.

Icons Used in This Book

The icons used in this book highlight particular paragraphs. The different icons represent the different reasons for highlighting the paragraphs.

tip.eps This icon highlights information that will help you deal with problems, hassles and irritations. Of course, the whole book should help you too, but the tips are short and easy to implement.

remember.eps This icon highlights information that you need to bear in mind; the sort of stuff that everyone who wants to know about autism should know.

trythis.eps This icon highlights suggestions for things you might like to try. These suggestions are a bit more involved than the Tips, and some can result in considerable changes to your life; others, however, are just fun.

technicalstuff.eps This icon highlights the fine details of a given subject. None of this information is essential, but reading it will round out your knowledge of the subject and deepen your understanding. Feel free to skip it, though, especially on your first reading of this book.

warning_bomb.eps This icon highlights information about potential risks of any course of action. Please pay attention to the warnings we give in this book. We’ve phrased them to be as autism-friendly as possible, so in places we’ve gone into quite a lot of detail about exactly what we mean.

Where to Go from Here

Follow your nose is the saying. From an autist’s point of view, that instruction’s either obvious — what else can you do? — or deeply confusing. No one ever explains what they mean. Well, for once we are going to explain. This expression means let your desire or your interest lead you towards something you want. The expression to sniff out comes from the same idea: following an interesting scent to its source. So if you really want to find out about a specific subject, look it up in the contents or the index now and start reading the book there. Otherwise, also following your nose, just turn the page and keep reading. When you get to the end of the book, don’t stop! An appendix lists other books you may want to read, and a glossary explains some key terms.

Part I

Understanding Asperger’s Syndrome

In this part . . .

In Part 1, you get an overview of what Asperger’s Syndrome (AS) is and a little bit about what living with AS is like. For the historians amongst you, we run through the changes in understanding of autism and AS over the years. We explain the current knowledge about the causes of AS in terms of genetics, biology and psychology, and get to grips with the different diagnostic criteria for AS. You can find out about the process of getting a diagnosis in childhood and adulthood, the pros and cons of diagnosis, and what to do after you get a diagnosis.

On top of all that, we review the other possible conditions and psychological disorders that commonly occur alongside AS, such as depression and anxiety. Finally, we explain how women with AS might have different experiences from men. After reading about all of this, you’ll have a great overview of AS and be able to think about some of the trickier issues we discuss later.

Chapter 1

Introducing Asperger’s Syndrome

In This Chapter

Finding out what Asperger’s syndrome is

Discovering its history

Recognising what Asperger’s syndrome isn’t

When people first hear about autism or Asperger’s syndrome (AS), they often think about the film Rain Man — the one in which Dustin Hoffman’s character could memorise all the numbers in the phone book and do difficult maths in his head really fast. Some people on the autism spectrum have these amazing abilities, but not all. In fact, only about one in ten people on the spectrum have a so-called savant skill — an incredible ability in a particular area. Misconceptions like all people with autism have an amazing skill are some of the false impressions of AS we deal with in this chapter.

One thing about Rain Man that was quite an accurate portrayal of the autism spectrum was the character’s dislike of change. He liked to stick to his routines and know what was happening when, and had certain obsessive interests. He also found social interaction hard to understand and sometimes had difficulty communicating. So the film covered some of the key characteristics of the autism spectrum: dislike of change, obsessive interests, difficulty with social interaction, social communication and social imagination.

In this chapter, we introduce you to AS as part of the autism spectrum. You can find out how it was discovered, what life with AS is like and how AS is diagnosed.

Describing What Asperger’s Syndrome Is Like

Describing a person with AS at key stages in his or her life is probably the best way to explain the condition. We’ve invented a fictional character here (called Robert) to help you understand what life is like from the perspective of someone growing up with AS.

Robert as a young child

Robert didn’t like being cuddled as a baby. He didn’t really enjoy playing peek-a-boo with his mother and didn’t smile very much. However, the rest of his development was fine: he learnt to both walk and talk at the right times. In fact, he was really good at language, often using really complicated words that were advanced for his age. Robert was interested in light bulbs as a young child. He learnt the names of each brand and each type of bulb, and had an extensive collection in his bedroom. He could talk about his collection for hours to whoever would listen! Robert didn’t play with other children at nursery school. He preferred to draw pictures of light bulbs on his own, rather than join in with games. At this age, Robert also hated the noise of the vacuum cleaner. His mum had to wait until he’d gone to nursery before she could do the hoovering.

remember.eps People on the spectrum are often extremely sensitive to sensory stimuli; sudden noises, for example, can be a particular difficulty, as can bright lights and certain smells. For more on senses and autism spectrum conditions (ASCs), go to Chapter 12.

Like anyone, Robert found changes in his life stressful. And some changes he seemed to find much more stressful than most people did. High stress levels can make anyone suffer and retreat into the safety of routine, and very small children displaying some rigidity which they then grow out of is completely normal. When Robert and his parents moved house, everyone found the experience very stressful. Robert’s stress, however, was something special: he wouldn’t come out of his bedroom for days, he made even less eye contact than usual and his hands shook continuously. His desperate need for routine and safety may have started here. His parents had to make sure he got up at 8 a.m. every day, got dressed at 8.05 a.m., brushed his teeth at 8.10 a.m., had toast and jam for breakfast (using exactly the same plate, knife and fork and eating the same brands of bread and jam), and so on. If anything had to change for some reason, he’d throw a really big tantrum.

tip.eps Routine is very important for some people on the spectrum. If you’re a parent looking for more information on routine, see Chapter 9.

Robert at school

Robert was bright, so he went to a mainstream primary school. He enjoyed learning but really struggled with break and lunch times. He’d often hit and kick other children who wanted to join in with what he was doing. He’d spend a lot of time standing at the edge of the playground, walking along the lines marking out the football pitch. This habit often got him into trouble when other children were playing football! Robert was still really interested in light bulbs and would switch the school lights on and off when he could, to see how the lights flickered. He was often in trouble with the teachers.

tip.eps Break and lunch times can be particularly difficult for children on the spectrum. Teachers may need to provide extra support during these periods or provide alternatives to going out in the playground, such as going to the library or a quieter, less busy area of the school. For more information on school and AS go to Chapter 11.

At secondary school, Robert became fascinated by history, particularly the world wars. He memorised lots of facts, details of uniforms and dates of battles. In fact, his history teacher used to get quite cross with him because he’d shout out the answers to every question she asked in class. He didn’t give the other students a chance to answer. Robert got bullied a lot at secondary school because he was different. Bullies pick on people who don’t have friends because no one tries to stop them. Robert wasn’t interested in girls and didn’t relate to the social chit chat teenagers enjoy. He didn’t understand why the other students would spend ages chatting at break and lunch time instead of doing something constructive like maths or reading about the Second World War in the library. He had one friend with whom he played card games, but the other children didn’t like him because all he’d talk about was world wars. Nevertheless, Robert did well at school academically (though he did struggle with English literature and foreign languages) and got a place to read history at university.

remember.eps People with AS aren’t intellectually impaired. They may be of average intelligence like the rest of the population, and some people with AS are exceptionally bright.

Robert as an adult

At university, Robert wanted to make friends and have a girlfriend, but didn’t know how. He liked one girl and so followed her to all her lectures, but the girl got cross and told him to leave her alone. Robert became miserable, because he hadn’t made any good friends, and he wasn’t enjoying lectures. Though he loved history, there were too many people in the lecture hall. Someone would always be coughing, which was a noise he couldn’t stand, and he found it difficult to concentrate on what the lecturer was saying because of the traffic noise outside. Other people in his classes teased him because he’d always wear the same T-shirt (it felt nice, and didn’t scratch his skin). He often couldn’t tell when people were being friendly or not, because he couldn’t recognise their facial expressions very easily. Robert struggled to get his work done on time, and ended up spending more and more time alone in his room. His parents became concerned and took him to see a psychologist to determine whether he was depressed. At this point, Robert was diagnosed with AS.

remember.eps You can be diagnosed with AS at any age. You have the condition all your life, but people may not realise it until you’re older. For more information on diagnosis, see Chapter 3.

Having a diagnosis of AS opened the door to some support at university for Robert. He was assigned a mentor, who helped him with lecture notes and organisation. His mentor also took him along to the pub, where he began to get to know some other people in his year at university. In his final year, Robert felt much better. He left university and got a job in a library. Unfortunately, things got worse again. Robert received no support at work, and his boss was always cross with him for not being flexible enough and not dealing well with the people using the library. In the end, Robert had to leave his job. He was still living with his mother, who organised all his bills, meals and clothes.

Now, Robert is 30 and his mother is still looking after him. He has a part-time job as a library catalogue assistant, and attends some social groups run by a local charity, but his mother is worried about what will happen when she’s no longer able to look after him.

remember.eps Robert isn’t a real person, but his story includes many facts that are common features of AS. You may find this brief description of what AS is like useful in relation to your own life or that of someone you care for.

Recognising the Characteristics of AS

Unusual behaviour is characteristic of people on the autism spectrum (see the previous section on our invented character, Robert). The autism spectrum applies to people who have difficulty with social communication, social interaction and social imagination.

We used the word social a lot in the previous sentence because the social aspect of ASCs is thought to be the most important in diagnosing them. We live in a very sociable world in which people often talk about the weather just to have something to say to each other. If you’re asked, How are you?, you should always reply Fine, thanks! even if you’re feeling really unwell. Unwritten social rules and social expectations are widespread in our society. If a pause occurs in conversation, people fill it with chit chat about the weather, even if they aren’t particularly interested in the weather. People ask other people if they’re feeling okay out of politeness, rather than because they really want to know the true answer. These sorts of social niceties are often a mystery to people with AS. In fact, many people with AS have to learn such things by rote, if they’re able to learn them at all.

If you have AS, you may have difficulties with the following things:

Understanding social interactions, social rules and social expectations

Recognising other people’s feelings and emotions (by their facial expressions, tone of voice, or body language and gestures)

Making friends and keeping friends, even though you may want to have friends

Making conversation (knowing when to start or end a conversation and what to talk about)

Understanding jokes, sarcasm, idioms and metaphors (you may take language very literally)

Figuring out what other people are thinking (you may find other people confusing and unpredictable)

Imagining alternative outcomes to a given situation

All these difficulties can make life a struggle for people with AS. More than half a million people in the UK have an ASC. That figure represents at least one in 100 people trying to get to grips with the very sociable world we live in. Our society can be very confusing and frightening if you don’t understand it and can’t predict what’s going to happen next. People on the spectrum may not seem to be very interested in people and may withdraw from society altogether. This withdrawal isn’t surprising — imagine having to work out what other people are thinking and feeling all the time. You may not have to imagine this scenario — it could sound very familiar to you.

Considering Other Aspects of AS

As well as the difficulties with social interaction, social communication and social imagination, people with AS have other characteristics that can make their lives tricky, as described in the following sections.

Sensory issues

People on the spectrum often have sensory sensitivities or insensitivities. For example, the label in the back of your shirt may feel painful on your skin if you have a particular sensitivity to touch. You may wear very tight clothing in order to feel properly’ clothed if you’re insensitive to pressure. The noise of a vacuum cleaner, a baby crying or a dog barking may hurt your ears. The smell of perfume may make you feel sick. Simultaneously, some sensory input may be really attractive for you, like a fan spinning around or patterns of flickering lights. Imagine having to walk down a street being bombarded by smells, noises, lights and feelings when your senses are overloaded by the experience, and then trying to act normal’ among the people around you. You can find out more about sensory sensitivities in AS in Chapter 12.

tip.eps If someone with AS wants to wear open-toed sandals and shorts in the winter, you should let them. They probably want to do that because socks and trousers make their skin feel sore, or they get too hot — yes, really!

Routines

Living in a world that you can’t predict, where you can’t figure out who’s going to do what and when, and where sensory information is distracting, painful or overwhelming is going to make you feel stressed out. Many people with AS rely on maintaining strict routines in their lives to make more sense out of it and to have some control over what’s going on. People with AS may get upset if the routine they were expecting doesn’t happen. Many parents do their utmost to create order and predictability for their child with the condition.

remember.eps While people with AS often need some predictability and routine, learning that things may not always work out as planned is important. If you’re a parent of a child with AS, allow your child to have the routine that he or she needs, but also try to teach flexibility from time to time. See the nearby sidebar "Choosing your weapons and your battleground carefully’.

Special interests

Many people with AS have special interests. For our character earlier in the chapter, Robert, it was light bulbs and the world wars. The Goth is particularly interested in psychology, physics, linguistics, gait and poise (how people stand, walk and move), history, art, archaeology, Formula One, walking (in the countryside), maps, cricket and the autism spectrum. Not to mention the interconnections between these things! People with AS often become highly expert in a particular area such as train timetables, fossils, fashion or hairstyling (your culture tends to influence what subjects you become interested in — you can guess which of these are usually picked by boys and which by girls!). People on the spectrum may find understanding that other people may not be as interested in the things they are difficult, and may talk incessantly on the same subject without realising the person they’re talking to is bored.

remember.eps Special interests may take over a person’s life, but don’t try to stop someone from pursuing his or her interests altogether, just encourage the person to do something else some of the time. A special interest may provide a person with opportunities or even a career in the future.

Looking into the History of AS

The term Asperger’s syndrome was first used in 1981 by Dr Lorna Wing, an expert in the autism spectrum. She drew attention to a paper written by Hans Asperger in 1944 which described people with the social, communication and imagination difficulties we talk about earlier in this chapter. To understand a bit about where the different diagnostic labels on the autism spectrum come from, you need to know a little bit about the history of Hans Asperger and another doctor, Leo Kanner.

Choosing your weapons and your battleground carefully

When the Goth was three and learning to use cutlery, he found it too difficult to use a fork in his left hand. The Goth’s parents are very old-fashioned and felt that using a fork right-handedly was incorrect, so they tried to insist that he eat "properly’. After several weeks and many, many tantrums, they gave up and allowed him to use his fork in his right hand and his knife in his left.

The Goth’s parents used an old set of cutlery given to them by a relative. It was incomplete, and some of the knife handles had been damaged by hot saucepans and other accidents over the years. The dinner knives were larger than the side knives, so the children used side knives because they were easier for their small hands to manage. Only three side knives were left in the set, two of which had damaged handles. The Goth tried to insist on always using the "perfect’ one, but while his parents eventually saw the reasonableness of using cutlery left-handedly, insisting on a particular knife was just not reasonable. The Goth tried to compromise by agreeing to use either the perfect one or the butter knife (of which there is only one in an old-fashioned cutlery set the one with the serrated tip for scraping the butter off the rock-hard pat). This behaviour was still unreasonable. For some reason, the Goth didn’t fight hard over this one, so having got used to the feel of the different handles, after quite a few tantrums he used what he was given.

Introducing Hans Asperger and Leo Kanner

Leo Kanner, an Austrian doctor working in America in the 1940s, was the first person to describe a group of children who shared a set of characteristics we now call autism. These children preferred to be alone rather than with others, liked playing with objects rather than other children and had problems with language. Kanner coined the term autism because it suggested a desire to be alone (autos means self). Children described in Kanner’s paper had a desire to do the same thing over and over, and were quite rigid in their routines.

During the same period, Hans Asperger, another doctor in Austria, published a paper describing a group of children whom we now recognise as being on the autism spectrum too. These children found it hard to make friends, had one-sided conversations and had intense special interests that they could talk about for hours. Unlike the group Kanner described, Asperger’s children didn’t have difficulty with language and spoke fluently (they often resembled little professors as a result of the advanced language they used and their incredible knowledge about their favourite topics). No one in the English-speaking world took much notice of Hans Asperger’s 1944 paper, because it was published in German. Not until Dr Lorna Wing drew attention to his paper did people start using the term Asperger’s syndrome. The paper was then translated in 1991 so that people in English-speaking countries could read about Hans Asperger’s work.

Nowadays, experts in ASCs argue about the differences between the diagnoses of high-functioning autism and AS. Many say that no difference exists between people with these two diagnoses; others think they are different. Arguments about diagnostic categories continue to this day, and, in fact, a new version of the diagnostic manual for doctors, due out in 2013, will include a revision of the different ASCs. Chapter 3 covers diagnosis.

remember.eps Whatever your or your child’s diagnosis, always remember that each person is an individual and will be different from the next person. No two people on the autism spectrum are the same. Each person’s needs and interests will vary.

remember.eps Whenever we say you or your child we mean you or your child — repeating the whole phrase each time would just be clumsy.

Understanding autism as a spectrum

You’ll come across the term autism spectrum quite a lot when researching AS, so it’s probably worth us spending a bit of time explaining what the autism spectrum is and where AS fits on it. Asperger’s syndrome as a label was suggested after that of autism. Autism spectrum conditions is a term used to describe all people who have difficulties with social communication, social interaction and social imagination. The autism spectrum contains lots of labels, one of which is AS.

The concept of autism as a spectrum was first developed by Dr Lorna Wing, who has since worked extensively on autism and published many important research papers. The word spectrum implies some sort of variation, and indeed people can vary in their difficulties or abilities regarding any of the characteristics associated with ASCs. The term AS is used for people at the more able end of the autism spectrum.

If you have AS, you don’t have a learning disability like many people at the lower end of the autism spectrum do (learning disability is when a difference exists between someone’s expected performance, given their intellectual ability, and their overall achievement at school). Specific learning difficulties such as dyslexia, dyspraxia and dyscalculia (problems with reading, co-ordination and arithmetic) do affect people with AS, though, and all people on the spectrum have non-intellectual learning disabilities (sometimes called social disabilities or social learning disabilities). These non-intellectual learning disabilities mean people on the spectrum find learning the meaning of body language, facial expression and tone of voice very difficult. Some also struggle with face-blindness, which means they find it hard to recognise people from their faces.

Most people with AS have average or above-average intellectual ability. They’re also usually highly able to communicate using the spoken word. Some people with AS, however, may not talk out of choice — called elective mutism — and some may talk less because they’re not sure how to make conversation. In contrast, people on the lower end of the autism spectrum may not be able to talk at all, or may only speak in phrases. Some may communicate using symbols or express themselves by writing things down rather than using words.

These days, experts in autism like to describe ASCs as a landscape rather than a spectrum, because a landscape allows for variations across many dimensions, not just one. But we’ll stick to autism spectrum conditions for now (autism-landscape conditions just sounds a bit odd!). For more information on the diagnosis of ASCs, go to Chapter 3.

Looking at Where We Are Today

Researchers, parents and people with ASCs themselves have been trying to understand the causes and characteristics of ASCs for years. Thankfully, professionals have moved on from diagnosing children as being retarded or emotionally disturbed, but we still need to study more and hear more people’s stories to understand autism and AS fully.

Understanding the changing prevalence of autism

Twenty years ago, very few people had heard of autism spectrum conditions, let alone AS. Now they’re much more widely recognised, and everyone seems to know someone who has an ASC or at least to have heard of it. Recent estimates suggest that about one in 100 children in the UK has an ASC. When you apply that figure to the whole UK population, it means over half a million people in the UK have an ASC (not all of these people will have a diagnosis though). More males than females