Introduction to autism Seeing the world very differently by Ros Bunney First of all, have a go at playing this game: • Identify the following colours What colours are these? • • • • • A: 1. Red 2. Blue 3. Green 4. Yellow Did you get it right? What colours are these? • • • • • A: 1. Crimson 2. Blue 3. Emerald 4. Blond Did you get it right? What colours are these? • • • • • A: 1. Scarlet 2. Azure 3. Leaf 4. Blond Did you get it right? What colours are these? • • • • • A: 1. Scarlet 2. Sapphire 3. Leaf 4. Buttercup Did you get it right? What colours are these? • • • • • A: 1. Crimson 2. Azure 3. Emerald 4. Yellow Did you get it right? Now ask yourself these questions: • Did you understand why the same question had a different answer each time? • Were you able to work out which answer would come up? • Did you find yourself getting bored or frustrated with the task? • How did the exercise make you feel? Life seen through the autistic spectrum • For many autistic people, life is like a game in which you don’t know the rules. • Other people know the rules, but every time you think you have them worked out, they change. • These changes seem random and patternless, so they can never be predicted. For example: • Banging a drum makes an interesting booming noise. • Banging a tambourine makes an interesting tinkling noise. • If you bang someone hard enough, they make an interesting crying noise. • You are usually allowed to do the first 2 of these. • Someone usually stops you if you try to do the third one. Why should this be? • All three involve banging something. • All three make a nice noise. • So why should the “rules” of the game change in the third instance? You and I know the answer to that. • We can empathise. We put ourselves in other people’s shoes. • We know that it hurts when someone thumps us, and so we don’t do it to other people. Autistic people can’t think like this • They lack the ability to empathise. • So to them, this change to the “rule” about banging things is completely arbitrary. • This gives rise to anxiety – if I can bang a drum or a tambourine but not a person, how am I to know what other things I’m allowed or not allowed to bang? • How about a teapot? Or a cat? Or a banana? • They have no way of working out the answers to these questions – all they can hope to do is learn and memorise which ones are allowed and which are not. Sometimes the rules change. • Brother and sister are messing about, playfighting. • One gives the other a playful slap. They fall about laughing, and, crucially, MUM AND DAD DON’T STOP THEM! • Ok, so now the rules have changed. • Sometimes it is ok to bang someone else. • How am I to know when it’s ok and when it’s not ok? • It would be completely beyond the ability of most autistic people to work out the answer to this question, even though it seems obvious to us. An unsafe world • A world where everyone else understands the rules, even when the rules change without warning, feels very scary to someone who doesn’t understand the rules. • The person has to do things to make the world feel safe. Things that make the world feel “safe” • Only ever eating the same few foods. • Only playing with the same few toys. • Repeatedly fiddling with the same object. • Always visiting the same shops and restaurants. • Always doing things at the same time every day or on the same day every week. These things give predictability to life • These things are the autistic person’s own rules which they can impose on the world. • They won’t change because the autistic person has made them up himself. • Even when the person no longer likes something (e.g. goes off a particular food or activity) he/she will continue to do it so that the world stays predictable and safe. Factors beyond the person’s control • For one person every day has to start with eating cornflakes. This gives the day a “safe” start. • What happens when the cornflake packet is empty? • Now the whole day is unsafe. • For another, every Tuesday, Dad comes to visit. • What happens when Dad is sick or on holiday? • If things like this can change, suddenly the world is a very scary and unsafe place again, and this can cause a huge amount of stress for the autistic person. Other things that make the world “unsafe” • Some people are very sensitive to sensory stimuli. • They quickly get “overloaded”. • This causes feelings of panic. • When you enter a room, you notice the important things, but during the course of your life you have learnt to “filter out” the things that don’t matter to you. Autistic people notice everything. • Literally everything. • They don’t have a “filter out” mechanism. • They don’t distinguish between important and unimportant things. • They notice every stain on the carpet, every sound that is to be heard, the colour of the pen on the sideboard, the leftover smell from last night’s dinner, the bit of grass stuck to your shoe. What is important? • They can’t guess which is the “important” thing you want them to notice. • It might seem obvious to you, but all the impressions they are getting on entering the room are equally strong, so they don’t know which one they’re meant to focus on. • To you, it might be important that the person looks at you and listens to what you want to tell her. • To her, that bit of grass stuck to your shoe might be the thing that most strikes her, so she might concentrate on that and not hear what you are saying. • How is she to know? These are your “rules” to the “game”, not hers. From her perspective they are random and unpredictable. • Why should your words be more important than that bit of grass on your shoe? Both are in the room, and both are attracting her attention. How is she to know which one matters? • Only yesterday, when she came in from the garden, you made her wipe the grass off her shoes so she didn’t tread it into the carpet. • So once again, the rules seem to have changed. Distinguishing what is important • While you are talking to the autistic person, you may need to give her some other cues to help her understand what she needs to focus on. • You may know that she understands the question “Would you like a drink?” so you can’t understand why she ignores the question. • She has heard the question, but she has also heard your breathing, the song playing on the TV, the birds singing in the garden and the dustbin lorry pulling up outside. • She has no way of knowing which of these sounds matters at the moment. • So help her – stand in her line of vision and attract her attention. Ask the question again, “Would you like a drink?” but this time, show her a cup or glass so that she has a visual clue to help her focus on what she is being asked. Some sensory impressions are overwhelming. • For some autistic people, sounds can be overwhelming. • In a room where people are talking, the TV is on and there’s a tinny noise coming from someone’s i-pod, they can find the combination quite literally unbearable. • For others, it’s the opposite. Sounds are interesting – the more the better. Let’s have a combination of TV, CD, electronic keyboard, music video on the computer and personal stereo. • For someone like this, silence may be unbearable, so falling asleep in a quiet house at night may be nearimpossible. • Other people react similarly to strong smells, bright colours, certain tastes or temperatures – e.g. being unable to eat ice cream, or certain textures – e.g. not liking playdoh. Get to know the individual • Like the rest of us, autistic people are all different and have their likes and dislikes. • It’s just that their likes (e.g. hand dryers) may come to dominate their lives, and their dislikes may make life impossible and – once again – unsafe. • The only way to deal with this is to get to know the person and adapt the environment as much as possible for his or her comfort. Tell me what I’m thinking about • I have an image in my mind at present. • I’d like you to tell me what it is. • I’ll give you a moment to think about it. • Ok – what am I thinking of? Check if you were right. • Did you know I was thinking about a blue lorry? Of course not. • You can’t see what’s going on inside my head. • Many autistic people don’t know this. • If they are thinking of something, they assume you know about it. • Therefore, even if they can easily tell you in words, they may not bother to do so because they think you already know. The smarties test • This is used as a test to see if a child is autistic. • The child is shown a smartie tube and is asked what is inside. Most children, whether or not they are autistic, will say smarties. • The lid is taken off, and they are shown that the tube in fact contains pencils. What’s inside? • The lid is then replaced, and the child is asked, “If I showed this tube to Mummy, what would she think was inside?” • Most children will answer, “Smarties”. • Autistic children will usually answer, “Pencils”. • This shows that because they know in their own mind that it contains pencils, they assume that Mummy will know what is in their mind. Suppose you are caring for an autistic person • He comes home from a day out. • You ask him what he has done/seen. • Depending on his mood, he may humour you by telling you, or he may refuse to answer. • Either way, he sees the question as pointless because he assumes you already know. • Or he may want you to comment on something that happened while he was out. He won’t tell you what it was, because he assumes you already know what he’s thinking. • If you don’t give the response he is looking for (which you can’t, because you don’t know what he’s thinking) he may get very agitated because he thinks you are being deliberately difficult or awkward. • Once again, the “rules” of the “game” of life have changed, and life suddenly seems very unpredictable and scary, giving rise to high levels of stress and anxiety. How can this stress and anxiety be defused? • You can’t reason the person out of it (“I’m sorry Dad couldn’t come today because he was ill. Don’t worry, he’ll come next Tuesday as usual”). • That kind of reasoning will only work later on once the anxiety has been dealt with. Right now the person is in an emotional head-space which is way beyond the reach of reason. • The only other way, from the autistic person’s point of view, is to replace this unmanageable emotional pain with a manageable physical one. • This is why many autistic people self-harm when they don’t get their own way. • It might look like a temper-tantrum, but it isn’t. • It’s a frantic attempt to make this scary, unsafe world seem safe and predictable again. Pre-empting the stress • The best way to deal with this kind of stress is to pre-empt it. • If you know the minibus isn’t going to be available next week to take the person to the day centre, tell her as soon as you know. • She will experience some anticipation anxiety, but you can help her to deal with this by sitting down and planning how you will spend the day instead. • At first she may refuse to consider doing anything other than going to the day centre, but once she begins to realise that this is not an option, she may start to think about alternatives. Try to offer something that the person really likes, so that the alternative is seen as a treat. • Over the next few days, keep reminding the person about the change of arrangements. Go over the new plans and talk about what she will be doing instead. • Often the person may want you to role-play the substitute activity (“Pretend walking to the park”) so that she can picture in her mind what it will be like. • All this helps to restore some predictability and safety to her world. Unexpected changes • • • • • • • • • Some changes can’t be anticipated (you go out to the minibus and find it has a flat tyre, so the person can’t be taken to the day centre). This is bound to cause stress and anxiety and a strong reaction – you can’t prevent this, you can only limit it. Stay with the person. No matter how frantic and agitated she becomes, remain calm and speak quietly and slowly. Acknowledge her feelings and that you understand why she feels this way. Try as far as possible to prevent her from self-harming. At the first lull when you can get through to her, suggest an alternative activity which you know she likes. As soon as possible, use this chosen activity to distract her from the disappointment. It may take a very long time, but eventually some autistic people will come to learn that even a sudden change like this can be faced and survived without disaster, and some people may become better at learning to accept sudden changes. For others, this kind of unpredictability in life remains too frightening and they never really learn to deal with it. Facial expressions • Identify the moods behind these facial expressions: This is how they may look to an autistic person: • Most autistic people can’t tell, just by looking at your face, whether you are happy or sad, cross or friendly, relaxed or worried. You will need to spell out everything in words. • Tell him that you’re smiling because you’re happy. • Or that you’re looking friendly because you like him. • Or that you’re frowning because you’re not pleased with him. • Or that you are looking worried because you are sad to see him hurting himself. • You can’t assume that he will infer any of this from your facial expression. It’s a bit like this: • When I was in the garden, I saw a : • hérisson. You don’t know what that is? Well, it’s the same as an • Igel. Still none the wiser? It was a • erizo. Still don’t get it? Try • ježek. • Give up? • Facial expressions are as mystifying to autistic people as foreign languages are to us. • (Actually it was a hedgehog that I saw. You couldn’t understand that until I explained it in English. An autistic person won’t understand your facial expression until you explain it in words.) Say exactly what you mean • Don’t say, “I’ll cut you some slack this morning because I know you’re tired.” • Instead say, “I’ll let you stay in bed this morning” – then remember to say how long for – “for an extra half-hour” or “until ten o’clock” – otherwise the person will expect to be staying in bed until the morning is over, because that is exactly what you have said. • Similarly, don’t say, “I want you to be quiet” or the person will be anxiously waiting to know when he is allowed to stop being quiet. • Instead, say “I want you to be quiet for ten minutes.” Figurative and literal language • Autistic people tend to take everything literally. • They don’t understand metaphors. • We use metaphors far more often than we realise. • One autistic person thinks a cassette tape is a sharp cutting implement because someone once said to her, “I’ve recorded a tape for you, but I’m sorry the last song cut off.” • She took the word “cut” literally. Autistic obsessions • • • • • • • • • • • Autistic people often have obsessions with mechanical things because their behaviour is predictable and apparently purposeful. Having wet hands can be an unpleasant sensory experience, and so hand dryers are important. What’s more, a hand dryer is easy to understand. It consists of a box which attaches it to the wall, and a fan which blows air over a heating element which heats up the air so that it dries your hands more quickly. Most importantly of all, hand dryers do this predictably often. And they do it with a specific purpose – to get rid of that unpleasant wet sensation from your hands. This makes hand dryers, for some autistic people, VERY IMPORTANT. Far more important than people, who are unpredictable. Far more important than any other part of the outing you are on. Why did you go to the shops? To play with the hand dryer in the public loo. Maybe you also did some shopping, but that wasn’t why you went. Why did you go to the zoo? To play with the hand dryer in the loo. Maybe you happened to spot a few animals, but that wasn’t why you went. Why did you go to the swimming pool? Because it has LOADS of hand dryers and hair dryers too. Maybe you swam while you were at it, but that wasn’t why you went. Hand dryers are the important thing. They ARE the meaning of life. Dealing with obsessions • Asking a person with autism to give up their obsessions is like asking you to abandon your husband and children for someone else’s convenience. • But obsessions can be managed. • Playing with a hand dryer can be used as a reward for good behaviour on an outing, and withdrawn for unacceptable behaviour. • Listening to a hand dryer on the Internet can be used as a reward for good co-operation at home. • Outings can be planned to interesting places that have hand dryers, and the hand dryer either saved up to the end of the visit as an incentive, or used at the start and got out of the way so that the rest of the visit can be enjoyed – or both. People with autism • Like the rest of us, people with autism have abilities and talents, likes and dislikes, and areas of difficulty and frustration. • Asking “what does an autistic person want out of life?” is a bit like asking what a blue-eyed or lefthanded person wants out of life. They are all individuals with their own dreams and aspirations. • Autistic people can be difficult to get to know, but the effort is very rewarding as so many of them are interesting and likeable people when you get to know them. • I hope this brief introduction helps you to understand them a little better, and that your life is personally enriched by working with them! Suggested reading • The Curious Incident of the Dog in the Night Time by Mark Haddon, as well as being a great story, is a fascinating and realistic insight into the mind of an autistic person.