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Home > About autistic spectrum disorders > A guide for people with an autistic spectrum disorder > What is Asperger syndrome and how will it affect me? What is Asperger syndrome and how will it affect me? A guide for young people Asperger syndrome is quite a tricky thing to explain. Your friends and even your teacher may never have heard of it. This may mean that you and your family will have to inform the people you meet of your condition, and help them to understand any problems (and talents) you may have. Unlike something like measles which is very easy to recognise, another person cannot tell whether you have Asperger syndrome just by looking at you. People who pass you in the street will not be able to guess. This means that you can choose which friends you want to tell. Asperger syndrome does not mean you are not clever. On the contrary, people with the condition usually have an average or above average intelligence level. Therefore, any one who calls you names, simply doesn't know as much about Asperger syndrome as you do. Basically, people with Asperger syndrome have problems in three main areas. These areas can be divided up into
I am going to explain each of these areas in turn. I will then give you some tips which may help you and then answer some Frequently Asked Questions. You may have problems when talking to other people. You may have been quite a late talker - perhaps you didn't start talking until you were 4 or 5 years old. It may take you a bit longer to understand what is being said, or you may get confused by certain words or phrases. A good example is the common phrase 'if you eat much more you will burst'. This is a phrase intended as a joke, but some children with Asperger syndrome, like yourself, may get upset because you may take the speaker seriously. It can be very hard to tell exactly when someone is joking - especially as so many gestures (like smiling, or rolling your eyes which help you to fully understand what someone means) can be hard to understand. There are so many cues used in social communication, it is hard to list them all, but they can sometimes be just as important as talking. It may seem that everyone around you just seems to know how to interpret things and how to tell when someone is joking, but you may find this really hard. Sometimes this can lead to big misunderstandings, and possibly arguments. This means that as a person with Asperger syndrome you may have problems with some social relationships. You may not understand all the social rules and may therefore say or do inappropriate things. Sometimes this can be mistaken for rudeness. A good example may be a child who sees an over-weight person in the supermarket and says out loud 'That woman is very fat'. This may sound very rude, but the child is not intending to hurt the feelings of the over-weight woman, or to embarrass his parents. The child's understanding of how to behave in society is muddled up and disrupted. It is sometimes mentioned that people with Asperger syndrome find it hard to put themselves in somebody else's position. This doesn't mean that you are unfeeling, but that you need people to be a bit more honest with you. If someone is upset with you and they want you to recognise this, you may not be able to. With friends and family who know you this should not be a problem, as they will learn to communicate with you in a clear way. Unfortunately, this may mean that people who don't understand about Asperger syndrome get angry with you or your parents. If it makes you feel worried, perhaps you could practise what to say if this does happen: something like 'I'm sorry, I didn't mean to annoy or upset you, but I have a communication disorder', may be suitable. You may also have some problems in imagination. What interests you, may not actually interest other children. Perhaps you have a certain thing that you are really interested in, and if it was your choice, you would talk about it all the time. You may not be interested in games that involve pretending to be something else - like cowboys and Indians, or cops and robbers. This may be because you find it hard to think about how a cowboy would act, and therefore it is not that much fun for you. Perhaps you prefer your own company, and would rather play alone than in a group. I think that everybody feels like this sometimes, and you just need to tell your friends that you'll play later, but at the moment would like to be by yourself. I have now described the main three areas. You may have a few other areas where you are special, or different from your classmates. These may include: Being clumsy. Perhaps it is slightly harder to run as fast as everyone else, or to balance on one leg, or ride a bike. Some people find that doing a sport that helps co-ordination (like trampolining) can improve this. Disliking change. To some extent everybody likes to be able to guess what the day is going to be like. You may find that it is really quite upsetting when everyday things get disrupted. Sometimes change is unavoidable - maybe your teacher at school is ill, and a different teacher has to take your lessons. If your teacher is aware of your concern about this sort of thing, she may be able to inform you of any changes in advance, so you have time to get used to the idea. This can also be arranged at home. Perhaps you could arrange a timetable which tells you when you will have dinner and what you will eat and drink, when you can play etc. Then if things change, your family can change the timetable too, so once again you know in advance. This may also help if you always feel the need to ask questions, even if you've only just asked it, and already know the answer! If you had a timetable, you could look at it when you wanted to, you could even carry it about with you (see below for some more ideas about timetables). As I've already mentioned, you may have something that you are really fascinated by. I'm sure sometimes that people would be interested to hear all you have to tell them, but sometimes they may be too tired or busy. Try to remember to ask the person you are speaking to whether they would like to hear about your special interest. Let them tell you when they have heard enough, and then stop talking about your special interest and try to talk about something different. That way they are more likely to enjoy speaking to you again. Some people may remark that you speak in a strange way. What they may mean by this is that you possibly speak in only one tone - a bit like a speaking computer. By carefully listening to the different levels of voice that people use when they talk, you can try to copy. Sometimes you may copy somebody's accent - I spoke to a mum whose child talked just like Buzz Light-year!- which other people may find unusual or even funny. Maybe you have a very good vocabulary (list of words that you can use), and speak more like a grown-up (using big words and impressive phrases) than like a child. There may also be other things that I haven't mentioned. Here are a few suggestions that may help you Take a small notebook (one that fits into your pocket), and pen around with you. If you hear phrases that you don't understand, make a note of them. You don't have to do this in front of the person: you can always write it down later. When you get home, or see a friend who you feel comfortable with, ask them to explain the phrase. This can also work well when someone gets angry or upset at something that you said and you don't know why - in this situation it may be useful to also make a note of what was said before, what facial expressions they had (were they smiling and laughing etc.). Ask a family member to watch TV with you! Some soaps like Neighbours which have very clear storylines and a variety of social issues, can be very useful. You can discuss why someone said or acted in a particular way, you could even try to guess what is going to happen next. Certain other comedy programmes can also be a big help. A program like Mr Bean can show you in a clear way how not to behave in public, what people find amusing, what angers people etc. Mr Bean actually never says a word but manages to show lots of different emotions - which proves how important non verbal communication is. 'Third rock from the sun' is another good programme, as the people are from another planet and also have problems understanding the social behaviour of people on earth. Similarly Data, the android from Star Trek has difficulties understanding the emotions and feelings of the humans around him, although he would desperately like to understand why people say certain things, and react in certain ways. Act out situations you find hard in everyday life, with your family. This will let you plan what to say if the situation arises again. Perhaps you could go through the same situation several times, varying responses, and see the different effects what you say and do may have on your acting partner. Afterwards you can ask them about their feelings and emotions, this will help you to understand the way you can affect how someone else feels. If you don't know what to say to people, get a family member to stand close to you while you talk to another friend. You can arrange a special signal (e.g. perhaps a small cough) which you can do when you want some help with the conversation. Your partner can then whisper suggestions in your ear, which you can then repeat out loud. This may be a good way of enlarging your menu of conversation starters (things we say to people we may not yet know that well e.g. 'Do you like swimming?', 'What football team do you support?'). If you are interested in making a timetable, perhaps it could include pictures, symbols and words. This may make it easier to understand, and more fun to make. Perhaps you could make the timetable out of a felt board, and attach the pictures with Velcro fastenings (this is a material which makes it stick to other surfaces like felt - a bit like Sellotape, except Velcro doesn't lose its stickiness) Then if things change, your family can change the timetable too, so once again you know in advance. This may also help if you always want to ask questions, even if you've only just asked it, and already know the answer! If you had some sort of timetable, you could consult it as much as you wanted, you could even carry it about with you. If there are certain tasks you need to do every day but keep forgetting some of the points, or the order in which to do them, you could devise a checklist (perhaps a family member could help). For an example of a checklist, see Appendix 3. Calendars can be a very useful way of keeping aware of any events in the future, that way you can prepare yourself for any changes to your normal daily plan. If you find it hard taking turns in conversations, try to remember that talking and listening are equally important. You can usually tell when someone has finished their sentence because there is a pause, and they may look at you and wait for your reply. Don't worry if you occasionally get this wrong (maybe there is a big long silence because you don't realise it is your turn, or you come in too early and talk over the top of someone else) - everybody does sometimes. Perhaps you could think of some games that make you think more carefully about turn taking when speaking. A good one requires at least two players (but you can have as many as you want) and a ball. If there are just two of you, stand opposite your partner. There is only one rule to this game - you can only speak when you have the ball in your hands. The person who has the ball can speak about what ever they want, but not for too long, perhaps a couple of sentences. When they have finished what they wanted to say, they throw the ball to the other person, who then is allowed to speak. This is a similar idea to the one in a story called 'Lord of the Flies' by a man called William Golding. In this story, a whole group of young boys are stranded on a desert island - everybody has different ideas about what to do, and everybody wants to speak at once. In the end they find a conch (a big seashell) and decide that whoever wants to speak has to hold the conch, and everybody else has to listen. This game is a bit more fun because you can play it with a big group of people all in a circle, and because it is a ball instead of a shell, you can throw it, kick it, or pass it to whoever you want. Sometimes it can be very hard not to butt in and interrupt, but games like this help you improve your conversational skills. Join a pen pal club. Writing letters can be a great way to make friends, especially if you find it hard to talk to other people. Letters allow you to take a bit more time over what you want to say - you could get someone you trust to read it before you send it off - they may be able to make some suggestions (questions you could ask, facts you could tell them about yourself etc.). If you don't enjoy writing, but have a tape recorder, you could send them a message this way instead, if you have the equipment you could even send them a video introducing yourself! If both you and your pen pal have access to a computer (perhaps there is one at school, or in your parent's office at work that you would be allowed to use) you could e-mail each other. If you have a special interest, you could look through the magazines at the newsagents at find one about your interest, that prints the names and addresses of other children looking for a pen pal. If you would like to befriend someone who also has Asperger's syndrome and you are under 16 years of age, you could write to the 'Morning News Pen Pal Registry' in America. To do this, you will need to fill in a special form which you, or your parents can request from The National Autistic Society. If you would like a pen pal from a different country, you could write to the 'Worldwide Autism Association' (address given in Appendix 1). Finally, 'Write Away' is another penfriend club, for children who find it difficult to communicate. The young people who use 'Write Away' to make new friends, may have different needs to you - that is, they may not have Asperger's syndrome. Some members may have a physical disability, others may have problems learning. (If you would like to join 'Write Away', the address and details are given in Appendix 1). If you would rather make friends with someone who lives near you that you can visit, you could ask your family to get in touch with the local parent support group in your area. It may be that there are other children of a similar age to you, who would also like to make new friends. It may be interesting to talk to someone else with Asperger syndrome - you could swap stories, and share ideas. Perhaps they have a certain problem that you've had in the past, and you could tell them what you did. Perhaps there is no solution, but it can be comforting to know you are not the only one having problems. You are at a very special stage at the moment - you are well on the way to becoming an adult. I'm sure you've read books and watched television programmes where young people your age seem to be always arguing with their parents. Actually, this is a normal part of growing up. When we enter our teens (the period between 13 years of age and 19 years) lots of changes start to happen (this can happen quite a lot earlier - even from about 9 years of age). The main reason for this is hormones. These are chemicals responsible for turning us from children into adults. They are the reason that our bodies develop, we become hairier, and we sometimes feel emotional, tearful, and angry. These feelings can sometimes happen even when we cannot think of an explanation ( for example, if someone close to you hurts themselves, you can understand why you feel sad, but you can also feel sad on days when nothing upsetting has happened). Thankfully, our hormones do settle down and become a bit more predictable, but until then things can be a bit strange. For the first time you may begin to look at your friends and classmates in a different way. Particularly those of the opposite sex - this is all to do with hormones. There may be somebody that you find especially attractive, and who you feel really shy towards. Everybody feels like this at some time - you are not alone (although people may deny it when you ask them about this - usually because they feel shy too). It may seem like the most important thing in the world is to have a girlfriend or boyfriend, and you may get upset if you do not find someone, or if the person you like does not feel the same way about you. You may find this time very hard, perhaps more so than your friends, because of the problems you have communicating. Try not to worry too much about this - the best thing is to try and meet lots of people you get on well with, and just try to enjoy friendships. Girlfriends and boyfriends seem to come along when you are least expecting them - so it's best not to spend too much time worrying about when this may happen, or who they may be. Certain things may seem more important to your classmates and friends than they ever have before - like wearing a certain make of trainer, cutting your hair in a certain style, or speaking in a particular way. These things can be quite baffling, especially if you don't feel bothered by details like these. There are always some people who are more aware of things like fashions (these people are sometimes called trendy - because they follow the trends of fashion), and there are always people who will tease you for being different to them. Hopefully you will have some friends who are not so bothered about these things, and who like you for who you are, and not what you wear or say. People in their teenage years like to feel like they fit in with everyone else (this is sometimes referred to as 'fitting in with the crowd') - the way you talk, dress and act can determine whether you 'fit in' (what most people want) or 'stick out' (what most people try to avoid). Because you may be less bothered about fashions and trends, you may appear to 'stick out'. As people grow older they usually become more confident in the sort of person they are, develop a more personal taste in clothes and become less bothered about appearance. In fact as you grow into adulthood people usually start appreciating the differences, and a few people may try very hard to 'stick out' and be different. Because of your syndrome, you may be more aware of the advantages of having different skills, opinions and tastes to your classmates. This means you are mature for your age, but, unfortunately, it may take a while for your classmates to grow up. However, continually in your life you will notice in most situations, and for most people, 'fitting in with the crowd' is always important. If your parents become tired of listening to your favourite topic, talk to them about writing a contract (an agreement between people). You could discuss with them when they would rather you didn't talk about, or do certain things, and when they wouldn't mind. If you would like to make a contract, I have prepared one at the back of this booklet (see Appendix 2) which you can copy, or tear out to use. It doesn't have to be written down, you could arrange a 'verbal contract' with your family - but people may forget what they originally said and agreed upon, whereas if it is written down in a contract, you can always check it. The most important thing about this sort of agreement, is that no changes are made without everybody's agreement. It can be a good way of reminding yourself when you are not sure how to behave (you could keep a copy in your pocket). Don't worry if you occasionally get things wrong - the important thing is to try and keep to whatever you agreed. If you get anxious over certain things (e.g. if things suddenly change) have a talk with your parents about things that could help. Some people find that carrying a picture of something pleasant (a postcard of a mountain, or something you are interested in e.g. trains) which can be looked at when they feel themselves getting upset, can help to calm them. Other people find that distracting themselves with tasks (e.g. counting backwards from 10, or counting the different colours in a nearby shop window) can also help. Think about what you personally like - it may even be something like a particular fabric (if you like the feel of silk you could keep a small piece in your pocket, and stroke it when you feel worried), or smell (if you like the smell of lavender you could keep a small packet of the dried flowers in your pocket to smell when you need it). It may take a while for you to discover what really works, but don't give up! Sometimes certain sorts of music can be really soothing after a hard day at school - if this seems to work you could carry a tape of this around in your walkman - ready for when you need it. You could also try sport to relax you, or just running around the garden with friends, brothers or sisters, or a pet. If you parents see you are upset by something they could massage the back of your neck and shoulders to make you feel better. Sometimes nothing can beat a hot water bottle when you are feeling a bit sad (don't fill the hot water bottle with water by yourself - always ask your parent/carer for help). These are just some suggestions, try and think of some others with your friends and family. Finally . . . some answers to some questions you may have
It is important to remember that you are not alone - there are many people with Asperger syndrome. People with Asperger's can go on to achieve a lot of things - including going to university, getting a good job, living in your own house etc. You will always have Asperger syndrome, although as time goes on you may get better at things you used to find really hard. Just as everyone without Asperger's is different, no two people with the disorder are the same. You are unique, nobody else has quite the same talents, ambitions or personality as you. It may be tempting to try to change the way you are, because you feel you are different, but many people will like you because you are different from anyone else they have ever met before. Most importantly, remember that you are exactly the same person you always were, before you ever heard the words Asperger syndrome. Only now, you have a way of understanding why you find some things tricky, and also can find ways of making life easier for yourself. If you have any more questions please contact the Autism Helpline. You can email autismhelpline@nas.org.uk, or write to The Autism Helpline, The National Autistic Society, 393 City Road, London, EC1V 1NG. Acknowledgements Some of the ideas represented in this work were generated after reading the work of two authors - Pat Howlin, 'Autism - preparing for adulthood'. Routledge, 1997. Tony Attwood, 'Asperger syndrome - a guide for parents and professionals'. Jessica Kingsley, 1997. Addresses For Penpal Clubs If you would like a penpal who lives in a different country, you will need to write to the following address; Worldwide Autism Association If you join the Worldwide Autism Association, you will receive a newsletter called Bottlemail (3/4 times a year). To become a member you will need to send a payment of 15 Swiss Francs (this is about £6.50 in English money). If you would like a penpal who also finds communicating with people hard, you could join Write Away. It costs £2 to become a member (if there are a few of you, it is possible to join as a group), if you are interested write to the following address for a registration form: Write Away If you are a member you will receive up to 3 penfriends (the club tries to find you a penfriend within 3 weeks of you joining). Members will receive a colourful writing pack (including paper, envelopes, pen, stickers and a badge), a newsletter and the opportunity to meet other members at Write Away parties and events. Brothers and sisters can also join the penfriend club. Contact of Agreement I ------------------------------------ (insert your name
here), Signed by -------------------------------------- (put your signature
here) This particular contract was concerning things you might like to talk about, but it can be used for a variety of things (such as activities or routines that you like to carry out, songs you like to sing etc.). A checklist for my shower (an example)
(You could cover the checklist with see-through plastic, so you could actually attach it to the wall in the shower) About autistic spectrum disorders | News | Publications and resources | Links | Research | About the NAS | NAS services | NAS campaigns | Join the NAS | Job vacancies | Volunteering | Fundraising | Training | Your comments | Contact us The
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