Beginning to Understand Asperger Syndrome

Beginning to Understand Asperger Syndrome Emma Ward, Frank Chapman & Paul Skirrow Emma Ward, Frank Chapman The Liverpool & Paul Asperger Skirrow Team T H E L I V E R P O O L A S P E R G E R T E A M, O L I V E M O U N T M A N S I O N, O L D M I L L L A N E, W A V E R T R E E, L I V E R P O O L, L 1 5 4 H B

Contents: Beginning to Understand Asperger Syndrome Page 4 Page 5 Beginning to Understand Asperger Syndrome A brief history of Asperger syndrome What is Asperger syndrome? Page 6 What causes Asperger syndrome? How common is Asperger syndrome? Page 7 Page 8 Page 9 Page 11 Page 13 Page 15 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24 Page 25 Asperger syndrome and the Autism spectrum The triad of impairments Social Communication Exercise 1: Social Communication Social Interaction Exercise 2: Social Interaction Social Imagination Exercise 3: Social Imagination Common features of Asperger syndrome Special Interests and Hobbies Exercise 4: Special Interests and Hobbies Structure, Routine and Change Exercise 5: Structure, Routine and Change Sensory sensitivity Hearing 1: Loud and sudden sounds Exercise 6: Hearing Page 2

Page 26 Hearing 2: Quiet Sounds Exercise 7: Hearing Page 27 Touch Exercise 8: Touch Page 28 Page 29 Exercise 8: touch (cont.) Sight Exercise 9: Sight Page 30 Taste Exercise 10: Taste Page 31 Page 32 Page 33 Page 34 Page 35 Page 36 Page 37 Smell Movement and Motor Control Being diagnosed with Asperger syndrome Common responses to diagnosis Disclosing your diagnosis Your family Identifying your strengths Exercise 13: Identifying your strengths Page 38 Page 39 Exercise 13: Identifying your strengths (cont.) Page 3

Beginning to Understand Asperger Syndrome If you are reading this, you may have been, or know somebody who has been diagnosed with Asperger syndrome. You may be struggling to understand what Asperger syndrome actually is, and what it means to your everyday life. We hope that this booklet will be a first step towards understanding and coping with your Asperger syndrome. In this booklet we will look at: o What Asperger syndrome is. o Some common difficulties experienced by people with Asperger syndrome. o Some common behaviours of people with Asperger syndrome. o What a diagnosis of Asperger syndrome can mean to your everyday life. o What Asperger syndrome means to people in your family, your friends and strangers. o Some information about accessing support following your diagnosis. This information pack is intended for adults who have already been diagnosed with Asperger syndrome. Many people may identify similar difficulties and behaviours in themselves this does not mean that you have Asperger syndrome. It is important to remember that people with Asperger syndrome have experienced these difficulties for their entire lives and that having Asperger syndrome can have a massive impact on everyday life. However, if you feel concerned; you should seek advice from a professional. Page 4

A brief history of Asperger syndrome Asperger syndrome is named after Hans Asperger, an Austrian paediatrician. Hans Asperger observed young children with normal levels of intelligence and no language problems, but who behaved differently to other children in social situations. Hans Asperger wrote about his observations in 1944, but Lorna Wing introduced the term Asperger syndrome in 1981. Lorna Wing saw a similar pattern of social difficulties in the children that she worked with. It is since this time that Asperger syndrome has been used to diagnose both children and adults who experience difficulties in social situations. What is Asperger syndrome? v Asperger syndrome is a developmental condition that affects the way the brain processes information. v This means that you understand people and events in a very different way to others, who do not have Asperger syndrome. v People with Asperger syndrome usually have average or above average levels of intelligence and no language problems. v There are certain difficulties and behaviours that are common to many people with Asperger syndrome. These difficulties are usually linked to the social aspects of daily life. v Every person will have a unique account of Asperger syndrome and will not necessarily experience all of the difficulties that we will look at. Page 5

What causes Asperger syndrome? The exact cause of Asperger syndrome is unknown, but we do know: v Asperger syndrome is something you are born with, not something that you catch. v The brain develops differently in people with Asperger syndrome. v There may be a genetic link. It is common for more than one person in a family to have Asperger syndrome, Autism or autistic traits. v Asperger syndrome is not an illness. v Asperger syndrome is not contagious. v Asperger syndrome is not caused by bad parenting. How common is Asperger syndrome? v It is estimated that 1 in 100 people have Asperger syndrome in the UK. v Asperger syndrome is four times more common in males than females. v Asperger syndrome is a lifelong condition. A child with Asperger syndrome will become an adult with Asperger syndrome. v People in all ethnic groups and social classes can have Asperger syndrome. v Almost half of people with Asperger syndrome are diagnosed after the age of 16. v Some relatives within the same family may display similar behaviours to those present in Asperger syndrome. Page 6

Asperger syndrome and the Autism spectrum The Autism Spectrum Autism and severe Classic Asperger Learning Difficulties Autism Syndrome The autism spectrum is used to describe people with a wide range of skills and difficulties. People at one end of the spectrum can have many difficulties in daily life and living independently. They may have severe learning difficulties and may never learn to talk. People at the other end of the spectrum have difficulties that are less obvious. They may have social difficulties, but average or above average levels of intelligence. These people would be described as having highfunctioning autism or Asperger syndrome. All people on the autism spectrum have difficulties in three areas. These are: o Social communication o Social interaction o Social imagination These difficulties are sometimes called the triad of impairments. The triad of impairments is used to explain some of the experiences of people with autism spectrum conditions. Page 7

The triad of impairments SOCIAL COMMUNICATION SOCIAL IMAGINATION SOCIAL INTERACTION v Social Communication: People with autism spectrum difficulties can often find it difficult to understand conversations, especially when there are lots of people talking. Many people on the autism spectrum do not use or interpret non-verbal cues such as eye contact, facial expression or tone of voice when talking to people and can often interpret instructions, jokes and figures of speech in a very literal manner. v Social Interaction: Sometimes, understanding the thoughts, feelings and intentions of other people can be very hard, if not impossible. People with autism spectrum difficulties often find it difficult to understand the social rules that others seem to take for granted. They want to make friends, but find it very hard; often feeling like an outsider. Many people find it hard to use or interpret non-verbal cues such as eye contact, facial expression or tone of voice when talking to people. v Social Imagination: Children with autism spectrum difficulties often show difficulties in their ability to play imaginatively or create imaginative activities. Often, they will play with toys by lining them up, rather than playing with them as if they were real. When they get older, this shows most obviously as a love of routines and of doing the same things over and over again. Sometimes, this develops into a special interest, which a person is happy to do or talk about for hours on end. Page 8

Social Communication Social communication is the first part of the triad of impairments that we will look at, including some examples of common experiences. Here s a reminder: People with autism spectrum difficulties can often find it difficult to understand conversations, especially when there are lots of people talking. Many people on the autism spectrum do not use or interpret non-verbal cues such as eye contact, facial expression or tone of voice when talking to people and can often interpret instructions, jokes and figures of speech in a very literal manner. Talking to people can be complicated. It s easy to get confused about what people are trying to say. Especially when they talk really fast and keep changing the topic. You may not use non-verbal cues when you talk to somebody. For example: o You may use very little eye contact, or tend to stare when you are having a conversation with somebody, o You may not use any, or may use lots of hand gestures, o You may not use facial expressions to show your feelings or opinions, o You may not change the tone or pitch of your voice during conversations or in different social situations. Not using non-verbal cues makes it harder for other people to know what you want or when you are happy, sad or angry. In the same way, you may not notice these non-verbal cues when other people use them. For example: o You may not notice somebody nodding their head when they agree or disagree with something you say, Page 9

o You may not see somebody wink while they are telling a joke, or understand why they ve winked, o You may find it difficult to guess somebody s mood just by looking at their face and listening to their tone of voice. You may find personal space difficult to judge when you are talking to people, and people may complain that you stand too close to them. You may find it easier to understand what somebody means if they write it down for you. When somebody interrupts a conversation, you may need to start at the beginning of the conversation again. Page 10

Exercise 1: Social communication Read the social communication section. Can you think of times when you have found communication difficult? Write your own examples here: 1. 2. 3. You may think of lots of times when you have found social communication hard. If you run out of space, write on a separate piece of paper. Page 11

Now think about the types of things that help you when you are communicating and talking to people. 4. What things do you do to make communicating easier? 5. What things can other people do to make communicating easier? Page 12

Social Interaction Social interaction can be difficult for many people. There are so many rules that are supposed to be followed and they re not easy to remember. Here s a reminder: Sometimes, understanding the thoughts, feelings and intentions of other people can be very hard, if not impossible. People with autism spectrum difficulties often find it difficult to understand the social rules that others seem to take for granted. They want to make friends, but find it very hard; often feeling like an outsider. Many people find it hard to use or interpret non-verbal cues such as eye contact, facial expression or tone of voice when talking to people. Here are some examples: Meeting new people is difficult. You may find new people confusing or unpredictable and may avoid talking to them. Making friends can be really hard; some people have experienced bullying which makes them feel very anxious about making friends. You may not be interested in spending time with people your own age. You may feel very different to other people. They may be interested in things you don t like or things that you don t think are important. Being in big groups of people can be quite intimidating. You may avoid going to parties or going shopping because you don t like to be around lots of people. Talking about feelings and understanding how others feel may be a challenge. You may respond differently to other people in emotional situations. For example: o You may not share your happy experiences with others, o You may not offer comfort when somebody else is upset or anxious, o You may not seek comfort from people when you are upset or anxious. Page 13

You may be very honest, and sometimes upset people even though you don t understand why. Sometimes, you may say or do things that embarrass other people without realising. You may not understand why they would be embarrassed until it is explained to you. People may think you are not listening to them or are being rude because you don t comment on what they are talking about. If people give you too many choices, you may get confused, and not know what to do. Some people may think you behave inappropriately because you walk away or start doing something else in the middle of a conversation. It s easy to talk about your favourite subject for long periods of time. It s harder to know when other people want to talk about something else. Page 14

Exercise 2: Social interaction Read the social interaction section. What makes social interaction difficult or stressful for you? Write your own experiences here: 1 2 3 You may think of lots of times when you have found social interaction hard. If you run out of space, write on a separate piece of paper. Page 15

1. What makes you more likely to interact with other people? 2. What things do you do to make social interaction easier for yourself? 2. Are the any things that other people can do to make social interaction easier or less stressful for you? Page 16

Social Imagination Social imagination is important in many aspects of our daily lives and can mean different things to different people. Here s a reminder: Children with autism spectrum difficulties often show difficulties in their ability to play imaginatively or create imaginative activities. Often, they will play with toys by lining them up, rather than playing with them as if they were real. When they get older, this shows most obviously as a love of routines and of doing the same things over and over again. Sometimes, this develops into a special interest, which a person is happy to do or talk about for hours on end. You may not always realise that other people can think in a different way to you. You may find it difficult to understand the motives and intentions of other people. This means that it could be hard to guess why people behave in certain ways or why they may be asking you to do something. Knowing when people are happy, sad, upset or angry can be difficult. You may not always be able to understand why a person feels that way. You may understand things in a very literal way. For example if somebody asks Can you close the door? you may answer Yes but not know that the person is asking you to close the door. Imagining being in a situation may be difficult unless you have already experienced it. You may have trouble imagining the future including what you may be doing and where you may be. You may have a very different sense of humour to your family and friends. You may not find the same jokes funny. You may like to have a daily routine and to do things in the same order every day. You may have a special interest or hobby that you love to spend lots of time on. Page 17

Exercise 3: Social imagination Read the social imagination section. In what ways do you think social imagination influences your own life? Write these here: 1 2 3 You may think of many ways that difficulties with social imagination affect you. Write them on another sheet of paper if you run out of space. Page 18

Common features of Asperger syndrome We have thought about social communication, social interaction and social imagination. We hope you are starting to understand how having Asperger syndrome can influence: The way you think about the world. The way you understand the world. Your relationships with other people. How your communication style may vary from other people and the difficulties you may experience because of this. How your behaviour can be different to other peoples behaviours in the same situations. We will now look at some characteristics and behaviours associated with Asperger syndrome that are not part of the triad of impairments. You may be able to identify with some, but not all of these characteristics and behaviours. Remember, everybody will have a unique experience of Asperger syndrome. Page 19

Special interests and hobbies We all have activities and interests that we like to spend lots of time doing. You may be extremely dedicated to a certain activity and prefer to spend time on this than on other things. People may say you are obsessed with your special interest or hobby. You may have an intense interest in a certain topic and enjoy learning lots of facts about it. You may be an expert in this topic and spend lots of time reading books and watching programmes about it. Some topics of interest are: o the weather, o science, o lamp posts, o a television programme, o maths, o music and o transport. You may have an extensive collection that you are very passionate about. Your collection could be CDs and memorabilia that are associated with a particular musician; model trains or buses; badges or DVDs associated with a particular actor or director. People often organise their collections in very specific ways. For example, by category or in alphabetical order. You may have a system that helps you to organise your collections in a way that makes sense to you. You may have an activity that you love and would rather spend all day doing this activity than any thing else. Some people love playing computer games or repairing PCs others like to organise their collections. Anything associated with your special interest or hobby may be very important to you. You may not like others to move or even touch your possessions. Lots of time may be spent on your hobby and you may not think that other things are as important. For example, you may prefer to spend all day reading about your special interest, rather than going out or even preparing meals. Page 20

Exercise 4: Special interests and hobbies 1. Do you have a hobby or interest that you would love to spend all day doing? If so write about them here: 2. How do you feel if you cannot spend time on this? 3. How do you feel if other people move or touch your possessions? Page 21

Structure, routine and change A love of structure and routine is demonstrated by many people with Asperger syndrome. The level of insistence to follow a routine can vary between people. It is very common for a person with Asperger syndrome to follow the same routine each day. Having a routine means that you like to: v Complete tasks in the same order each day. For example: o 8.00am : Wake up and have a shower o 8.15am : Have jam on toast o 8.30am : Play on my computer o 10.30am: Go to buy my newspaper o 10.45am: Read my newspaper and have a cup of tea o 12.00am: Have my lunch. This has to be a cheese sandwich made with white bread. v Have meals at set times, often eating the same foods. v Complete activities in a set way v Know what is happening and going to happen at any given time of the day or evening. Change can be distressing and some people may get upset or even aggressive when an unexpected change occurs. If a change is planned then you may find it easier to cope because you are expecting something to be different. This could be going to a Doctors appointment or anything that you can prepare yourself for. You may not like change even when it is planned for, but may not feel as anxious as you do when unexpected changes occur. You may also like your home to be the same. You may dislike it when furniture is moved or rooms are decorated. Page 22

Exercise 5: Structure, routine and change 1. Do you have a routine that you like to follow each day? If so, tell us about your routine here: 2. How do you feel if something disrupts your routine? What would you do? 3. Is there anything that you or other people can do to make you feel happy or less anxious about changes to your routine? Page 23

Sensory sensitivity We all experience the world through our five senses: 1. Hearing 2. Touch 3. Sight 4. Taste 5. Smell The things we experience using our senses can: Sometimes feel good, Sometimes feel uncomfortable, Sometimes feel painful. Some, but not all people with Asperger syndrome may have a very different sensory experience to people who do not have Asperger syndrome. You may be highly-sensitive to some sensory information and get distracted by things that the people with you don t notice. Or you may be under-sensitive some sensory information and may not notice the things that bother other people. We will look at some examples of sensory experiences that are common to some people with Asperger syndrome. Remember, not everybody is sensitive to sensory information, and some people may only have unusual experiences through one of their senses. Page 24

Hearing 1: Loud or sudden noises You may not like loud or sudden noises. Other people may not be bothered by these sounds. For example: A group of people talking at the same time, Babies and children crying, People laughing or shouting, Car horns and fire alarms, The vacuum cleaner, When you hear these noises you may become anxious. You may also avoid going to places where you know you could hear the noises that you find unpleasant. Exercise 6: loud and sudden sounds Write about some loud sounds that you don t like and how they can make you feel. What do you do when you hear loud sounds that you don t like? Page 25

Hearing 2: Quiet Sounds There may be other times when you hear sounds that you find distracting. At these times you may find it hard to concentrate on other things and may wonder why other people don t hear the sounds too. The sounds that may seem louder or more annoying to you may include: The kettle boiling, Computers, fridges or fluorescent lighting, People talking in other rooms, Car engines in the distance. Exercise 7: Quiet sounds Can you think of any sounds that you notice that other people don t seem bothered by? How do you feel when you hear these sounds? Are then any sounds that distract your attention? How do you feel when you hear these sounds? Page 26

Touch Sometimes things may touch your hands or body and it may feel good. Other times, things touching your skin may make you feel uncomfortable or they might even hurt. Other people may say that you are being fussy or over-sensitive. Some things that you may like or hate include: People touching you, Brushing your hair or teeth, Cutting your hair or nails, The labels and seams on clothing, People bumping into you. You may also have a different experience of pain. For example: You may only feel pain on very rare occasions. You may even have been injured and not really noticed it. You may be extremely sensitive to pain and things may cause you pain a great deal of the time. You may also find it difficult to express your pain and to explain to somebody when you are in pain. Exercise 8: Touch Are there things that touch you that you don t like the feel of? Write them here: Page 27

Exercise 8: Touch (cont.) What about things that you like the feel of? For example if you like your clothes to be made of a certain fabric? Write some examples here: Do you dislike it when other people touch you? Why do you dislike this? What do you do if you don t like the way something feels? What do you do if you like the way that something feels? Page 28

Sight You may be very attentive to the details or individual parts of objects, but fail to notice the significance the object has as a whole. You may be sensitive to bright lights and they may hurt your eyes. Sometimes you may feel like there are too many things to see at the same time. This may make you feel confused or anxious There may be objects that you like to look at or watch, or you could be easily distracted by certain things that you see. These could be: The repetitive movements of some objects such as ceiling fans, washing machines and the wheels and pistons on steam engines. Shiny or reflective objects, The movement of trees. Exercise 9: Sight Are there any objects that you like to watch or any that you find distracting? Are there any places or objects that have too many things to look at the same time? How do you feel at these times? Page 29

Taste We all have certain foods and drinks that we like and don t like. You may have a very restricted diet, preferring to eat the same foods for every meal on most days. Things that make us like or dislike foods are: The way food tastes (the flavour), The way food feels in your mouth (the texture), The smell of food, The way food looks (for example, its colour). Exercise 10: Taste What foods do you really like or dislike? What makes you like/dislike them? What drinks do you really like or dislike? What makes you like/dislike them? Page 30

Smell You may be far more or far less sensitive to certain smells than other people. These could be pleasant or unpleasant smells. You may notice smells the people you are with don t seem bothered by or, you may fail to notice smells that the people around you are irritated by. Exercise 11: Smell Are there any smells that you think you are very sensitive too? If so, right them here: Are there any smells that you think that you don t notice? Write some examples here: Being highly-sensitive or under-sensitive to sensory experiences can have an effect on our daily life. For example: It can affect the way you make sense of the world. It can mean that you avoid going to certain places, for example, shops or using public transport. It can mean that you avoid doing certain activities e.g. washing, going shopping. Other people may think you behave inappropriately, but you are just responding to your own experiences. Page 31

Movement and Motor control It is common for some people to find certain activities difficult because of the movements they involve. Activities that involve good coordination and balance are often more difficult than activities that involve repetitive, individual movements. For example, playing tennis can be harder to do than running. Many people say that their body doesn t always do what they want it to. Movements that need lots of planning and coordination often look awkward or clumsy. This includes big and small movements. For example: v Running, swimming, v Sports, such as football or cricket, v Tying shoelaces, v Fastening buttons on clothes. Some people bump into objects and other people quite easily. Others may drop things or spill drinks things a lot of the time. Your family or people at school or work may have talked about the way you walk or sit. They may tell you that you look rigid and stiff and not as relaxed as when other people walk. When you are happy, excited, upset or angry you may repeat some movements over and over again. For example, you may flap you arms back and forth; jump up and down or rock your whole body from side to side. Exercise 12: movement and motor control Think about your own experiences, and write about any activities that you find hard because of the movements involved: Page 32

Being diagnosed with Asperger syndrome What is a diagnosis? Throughout this booklet we have looked at the different features of Asperger Syndrome. Some of these features have to be experienced by people in order for them to be diagnosed with Asperger syndrome. These features are usually listed together and are called diagnostic criteria. Health professionals such as Speech and Language therapists and Clinical Psychologists use assessments (such as the D.I.S.C.O) to find out if a person meets the diagnostic criteria for Asperger syndrome. There are three different sets of diagnostic criteria that are used by health professionals. These are called ICD-10, DSM IV and Gillberg s Criteria. We have put these criteria at the end of the booklet if you want to read them. A person does not have to meet all of the diagnostic criteria to be diagnosed with Asperger syndrome. In fact, it is very unlikely that someone will experience every feature of Asperger syndrome that we have looked at in this book. Why do I need a diagnosis? Many people with Asperger syndrome are diagnosed in adulthood. This often means that they have experienced difficulties throughout their lives and have never understood why. Some people find having a diagnosis unhelpful, and think of it as just another label. We are now going to look at other peoples responses to having a diagnosis to see the possible benefits of being diagnosed with Asperger syndrome. Page 33

Common responses to diagnosis People react in different ways when they are diagnosed with Asperger syndrome. o Some people feel like it explains many of their experiences, o Some people feel it helps them to understand the similarities and differences between themselves and others, o Others feel angry that they weren t diagnosed earlier and feel like they have been let down in the past, o Some people have already considered that they have Asperger syndrome and are not surprised, o Other people may worry about if they could have any other syndromes after living without a diagnosis of Asperger syndrome for so long. o Many people become upset when they realise there is no cure for Asperger syndrome. For my entire life I have wondered why I was different... being diagnosed with Asperger syndrome was like the missing piece of the jig-saw. I just thought I d been given another label... wondering if they d got it right this time. I panicked... I thought if I d had Asperger syndrome for so long without knowing, what else could be wrong with me. People always used to insult me... saying I was stupid, lazy and didn t try hard enough. I started to believe them... now I know their insults are not truth. Page 34

Disclosing your diagnosis Only you can decide if you want to share your diagnosis with your family, friends, people at work, or strangers. You may want to think about what disclosing your diagnosis means. Sharing your diagnosis could mean that: o Other peoples expectations and acceptance of you and your difficulties will probably change, o Any unusual behaviours that you display and the unique abilities that you have may be explained, o If people have a better understanding of you, they may be able to support you in better ways, o It could mean that people assume things about you based on a poor understanding of what Asperger syndrome but you can help them understand. Page 35

Your Family Your diagnosis of Asperger syndrome may also be very important to your family and friends. It means that they can begin to understand your difficulties and that there is a reason for them. Most people say that their families are not shocked to discover they have Asperger syndrome:... Nobody seemed very shocked; they knew I was different too... just glad to finally have an explanation.... My parents were relieved... it meant they could stop blaming themselves... Your family and other people who are close to you may also have found things hard in the past. Many families suggest that before the diagnosis: o They have been unheard, o They feel that they haven t always been given the proper advice and support. Families also felt that when their relative received a diagnosis it meant: o Accessing appropriate services for support, o Feeling relieved that all of the difficulties they d observed were not just in their imagination, o No longer feeling that they may be to blame for their relatives difficulties. Page 36

Identifying my strengths We hope that you now have a better understanding of how some of your experiences and difficulties are linked to Asperger syndrome. Now we want you to focus on the things that you are good at and the skills you have that other people admire. Some people think they have spiky abilities. This means that they are very good at some things like remembering lots of facts but not so good at other things like housework. Here are examples of things that other adults with Asperger syndrome are great at: People are always amazed by my memory... I can remember things that happened years ago, as if it were yesterday. I am excellent at following instructions; and can complete tasks perfectly when I use them. I like the fact that I m honest... sometimes people get annoyed with this... but they know they can trust me. I m very punctual... I always get to my appointments on time. I am reliable, if I say I am going to do something, I always get it done. I m quite intelligent really, if I m interested in something, I can learn enough to become like an expert in it. Page 37

Exercise 13: Identifying your strengths Think about the things that you are good at and the things that you find more difficult. Write your examples here. If you find this difficult, then ask somebody to help you. 1. 2. 3. 4. Page 38

Who are we? We are a group of professionals who have excellent knowledge and experience of working with people with Asperger syndrome. This means that we understand many of the difficulties you experience and have the skills to help you. The professionals that work on our team include: v A Speech and Language therapist (the team manager) v Clinical Psychologists, v Nurses, v A Social Worker, v Support Workers. What do we do? We can help you identify areas of your life that you find difficult and feel that you need support in. For example: v Understanding Asperger syndrome, v Coping with your diagnosis, v Promoting your social experiences, v Promoting your independence, v Promoting good health, v Managing your medication, v Speech and language therapy, v Psychological therapies. We can provide you with support in some of these areas and put you in touch with other services that can help you. Page 39

Box 1: ICD-10 Criteria for Asperger Syndrome A. A lack of any clinically significant general delay in language or cognitive development. Diagnosis requires that single words should have developed by two years of age or earlier and that communicative phrases be used by three years of age or earlier. Selfhelp skills, adaptive behavior and curiosity about the environment during the first three years should be at a level consistent with normal intellectual development. However, motor milestones may be somewhat delayed and motor clumsiness is usual (although not a necessary feature). Isolated special skills, often related to abnormal preoccupations, are common, but are not required for diagnosis. B. Qualitative impairments in reciprocal social interaction (criteria as for autism). Diagnosis requires demonstrable abnormalities in at least three out of the following five areas: 1. failure adequately to use eye-to-eye gaze, facial expression, body posture and gesture to regulate social interaction; 2. failure to develop (in a manner appropriate to mental age, and despite ample opportunities) peer relationships that involve a mutual sharing of interests, activities and emotions; 3. rarely seeking and using other people for comfort and affection at times of stress or distress and/or offering comfort and affection to others when they are showing distress or unhappiness; 4. lack of shared enjoyment in terms of vicarious pleasure in other people's happiness and/or a spontaneous seeking to share their own enjoyment through joint involvement with others; 5. a lack of socio-emotional reciprocity as shown by an impaired or deviant response to other people's emotions; and/or lack of modulation of behavior according to social context, and/or a weak integration of social, emotional and communicative behaviors. C. Restricted, repetitive, and stereotyped patterns of behavior, interests and activities (criteria as for autism; however it would be less usual for these to include either motor mannerisms or preoccupations with part-objects or nonfunctional elements of play materials). Diagnosis requires demonstrable abnormalities in at least two out of the following six areas: 1. an encompassing preoccupation with stereotyped and restricted patterns of interest; 2. specific attachments to unusual objects; 3. apparently compulsive adherence to specific, nonfunctional, routines or rituals; 4. stereotyped and repetitive motor mannerisms that involve either hand/finger flapping or twisting, or complex whole body movements; 5. preoccupation with part-objects or nonfunctional elements of play materials (such as their odor, the feel of their surface, or the noise/vibration that they generate); 6. distress over changes in small, nonfunctional, details of the environment Page 40

Box 2: Gillberg's (e.g. Gillberg & Gillberg, 1989) Criteria for Asperger Syndrome 1. Severe impairment in reciprocal social interaction (at least two of the following) (a) inability to interact with peers (b) lack of desire to interact with peers (c) lack of appreciation of social cues (d) socially and emotionally inappropriate behavior 2. All-absorbing narrow interest (at least one of the following) (a) exclusion of other activities (b) repetitive adherence (c) more rote than meaning 3. Imposition of routines and interests (at least one of the following) (a) on self, in aspects of life (b) on others 4. Speech and language problem (at least three of the following) (a) delayed development (b) superficially perfect expressive language (c) formal, pedantic language (d) odd prosody, peculiar voice characteristics (e) impairment of comprehension including misinterpretations of literal/implied meanings 5. Non-verbal communication problems (at least one of the following) (a) limited use of gestures (b) clumsy/gauche body language (c) limited facial expression (d) inappropriate expression (e) peculiar, stiff gaze 6. Motor clumsiness: poor performance on neurodevelopmental examination (All six criteria must be met for confirmation of diagnosis.) Page 41

Box 3: DSM-IV Criteria for Asperger Syndrome (1) Qualitative impairment in social interaction, as manifested by at least two of the following: a. marked impairment in the use of multiple non-verbal behaviours such as eyeto-eye gaze, facial expression, body postures, and gestures to regulate social interaction b. failure to develop peer relationships appropriate to developmental level c. a lack of spontaneous seeking to share enjoyment, interests or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people) d. lack of social or emotional reciprocity (2) Restricted, repetitive and stereotyped patterns of behaviour, interests and activities, as manifested by at least one of the following: a. an encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus b. apparently inflexible adherence to specific, non-functional, routines or rituals c. stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex body movements) d. persistent preoccupation with parts of objects (3) The disturbance causes clinically significant impairment in social, occupational or other important areas of functioning. (4) There is no clinically significant general delay in language (e.g. single words used by age two years, communicative phrases used by age three years). (5) There is no clinically significant general delay in cognitive development or in the development of age-appropriate self- help skills, adaptive behaviour, and curiosity about the environment. (6) Criteria are not met for another specific pervasive developmental disorder or schizophrenia. Page 42