Asperger Syndrome Paper by Ruth Coppard
‘In the 1980s a new definition of some children was heard. They were described as having Asperger Syndrome. This was an enormous relief to parents who had been greatly worried by this son who seemed ‘unusual’, ‘strange’, ‘not like the others’. A child with Aspergers looks very normal and is often bright but his behaviour is unusual to the point of isolating him from others of his age. He might seem naughty, but without malice. He rarely lies. He speaks to you as if you are his equal and might sound quite old-fashioned. This can get him into trouble, particularly since he can seem very rigid in his expectations; if you said something would happen, he expects that it will. This is the child who has been so focussed on some hobby that he seems to know everything in the world about it, but then he dropped it and moved on. A wonderful child, but complicated. And a worry because you ‘feel’ there is something wrong but you can’t put your finger on it.
Asperger Syndrome is a PDD, a Pervasive Developmental Disorder. It is a communication disorder and lies on the Autistic Continuum. Children are born with this. Often other people in the family have a tendency to similar difficulties too. Brain scans show that some parts of the brain of someone with Aspergers don’t light up in the usual way. There is no known cause and it can’t be cured, although children can be helped to better ‘fit in’. To understand the Autistic Continuum, imagine a long line with those people who do highly specialised further degrees at one end, going through those who star in quizzes knowing all about, e.g. a football club or carrots or spiders, to those people with absolute autism who seem to live in their own world and have virtually no awareness of anyone else.
Since Aspergers is a neurological weakness, children with Aspergers often have other difficulties, such as dyslexia or dyspraxia or hyperactivity. Many people have Asperger Syndrome but it wasn’t commonly recognised until the late 1980s and was not formally recognised in diagnostic criteria till 1994. At present, One person in a hundred is said to be on the Spectrum. A number of adults have not been formally diagnosed but have significant difficulties – they also have significant strengths. Some successful people who are said to have Asperger’s are Bill Gates, Bob Dylan, James Taylor, Garrison Kieller, Alan Turing. It is something that affects many more boys than girls, in a ratio of about 5:1.
The definition includes
a. limited empathy;
b. naive, inappropriate, one-sided social interaction, little ability to form friendships and consequent social isolation;
c. pedantic and monotonic speech; children may sound ‘old fashioned’.
d. poor nonverbal communication;
e. intense absorption in narrow topics such as the weather, Dyson hoovers, foodsupplements, dinosaurs, Thomas the Tank Engine, railway timetables or maps, which are learned in rote fashion and reflect poor understanding, conveying the impression of eccentricity; and
f. clumsy and ill-coordinated movements and odd posture.
It is easier to think of it as an emotional deafness where the person does not pick up on clues about how people feel. Therefore, they make the ‘wrong’ response or ‘no’ response in some social situations. Children with Aspergers do not ‘read’ faces and can’t tell when someone is becoming annoyed, although they are able to recognise extremes of emotion, very happy/angry/sad. They may find it easier to recognise photographs when they are upside down as they are sometimes confused by expressions. In fact, they often get very little information from faces and can’t tell who is older or younger and therefore won’t respond appropriately regarding showing respect etc.
Although children with Aspergers will recognise when someone is very unhappy, they are unlikely to ‘feel’ this emotion with any intensity and will not know that they should get involved or care. They tend to be very literal in their interpretation of what they hear and see. These are the children who hear ‘if you don’t pull your socks up…’ and bend down to do just that. They may worry when told that someone is ‘crying his eyes out’. They may seem gullible in that they readily believe people who show off and say they drink a lot, or can stay up till midnight. They do not usually lie. This combination makes for significant difficulties. One child was told to get into line. He pushed in and was then told off for Pushing In at the front of the Line. He was incensed by the unfairness: he had pushed in 3rd in the line but was being accused of pushing in the front. Another child was excluded for two days. He had to go to school with his mother to collect some work and was invited to wait inside by the Head Teacher. The boy refused – he had been excluded and that ‘meant’ he could not go in. < Teachers find that young children may not respond to an instruction directed to ‘boys’ or ‘the green table’ but need to hear their name or ‘you’. Children with Aspergers often have unusual sensory responses – although they have very good, almost exaggerated senses, they do not interpret their feelings well. So a child might not notice the need to go to the toilet till the very last minute; he may be fazed by large groups who make a lot of noise, he might be suddenly drawn to shiny things or things that twirl and flicker. Some children don’t respond to physical pain as you might expect and seem not to feel it, often they rarely cry. And many children find some textures quite unpleasant and won’t wear e.g. wool or shiny material or wellies. Others have trouble with taste and texture. Children with Asperger syndrome can find themselves isolated because they can’t work out the rules from watching the game. They often become angry with themselves because they don’t know how to behave. Sometimes when they are especially confused, they may try to ‘normalise’ the situation for themselves by making familiar noises.
Their language can be unusual – some small children develop an American accent – others sound very old- fashioned. They don’t observe social niceties because they don’t feel the need for them themselves – so they don’t find it easy to share or take turns, or to give in. They tend to develop rules that they operate by because this makes life easier, but they can not easily modify the rules to include new situations. For example, if they know that it is wrong to swear, they will ‘tell’ every time someone does, if they know that they should offer their friends sweets, they will give away all of them, [the new rule was ‘always keep the last one for yourself’] These are the children who are easily bullied; if other children say they have a big nose, they accept it as a truth and are not offended, and the teasing can become very unpleasant before the child is aware. Equally, these children might greet a visitor with ‘You are a fat lady’ or ‘What do you want coming here?’ They are mistaken as rude or insolent, and it can be very hard.
Children with Aspergers can be singled out at school and left alone, or may isolate themselves. This is often fine and many adults with Aspergers have said they were happy to spend time alone in the playground. Others feel lonely and try to join in but fail because they lack the empathy to share and take turns appropriately. These children try to learn useful rules – they are often good at laughing at jokes, but imperceptibly just after the others, and don’t grasp what exactly is funny. [One adult with Aspergers was telling us the story of a school trip; he knew he should include jokes. He told us how the 14 year old boys were queuing up to peer through a keyhole where Sir and Miss were cuddling on a bed. One boy became so excited that he started to have an asthma attack, so they had to knock on the door and disturb Sir. The audience roared with laughter, but then the speaker gave us the punchline of his joke. ‘And they weren’t even married’. Children with Aspergers often find it easier to get on with adults than with children. Adults will follow their conversational lead, and will allow them to talk for ages about their favourite subject. Siblings can find a brother with Aspergers hard to live with – they don’t really follow what is going on, they need more support, they may be embarrassing in school. Parents often find it difficult to explain what is wrong – the child looks normal, beautiful even, but then behaves strangely, tantrums about nothing, gets absorbed in silly repetitive behaviour.
What can you do?
Clarify your diagnosis, and then read any number of websites, books etc. The english autistic society website is helpful : http://www.nas.org.uk
Your child feels isolated, a bit different and isn’t always able to understand what people are saying or doing. Some children hate change, some children worry about time, some are very sensitive to noise or smells. You know your child best of all – read through the suggestions and work out what will help him or her. If you’re not sure, try something and see if it helps. Remember each child is an individual with individual strengths and weaknesses.
Children with Asperger Syndrome – Aspies – are very often frustrated by every day experiences. Because they are unable to learn easily from watching other people’s experiences, and because they often don’t hear or remember the casual references you make to something that’s going to happen, or might have happened, it is very important that they have a structure they can rely on. Almost all young children enjoy having a timetable to which they can refer in order to find out what’s happening next. It’s a good idea to put a weekly schedule up with the different days going down the page, and the plans for what is going to happen going across. Start with getting up, put in getting dressed, eating breakfast, going to the toilet etc and then move on through the day. This will usually involve going to school at more or less the same time every day, and coming home later. Put in shopping trips, visits, games the dentist, and go on after teatime to put the things you usually do in the evening, including a shower/wash/bath, brushing teeth and going to bed. If you are going to stay at someone else’s house or going on holiday, make sure that is obvious a few days before – although you don’t need to give details if it’s going to be a surprise. For small children, it’s often helpful to put photos or drawings to explain what is happening alongside some words.
The time should be written over the top of the sheet, but, because many children like to be specific about the time and are upset if something is late, it’s usually a good plan to put 8ish , or from 7.55 – 8.10 to allow for those times when the phone suddenly goes, or you are running late etc. Similarly, in the holidays, it is usually a good idea to put alternatives: i.e. if you are planning a picnic for Thursday, but can’t guarantee the weather, then put a picture of a picnic with a sunshine and a picture of an alternative with some clouds. Many parents have found that the timetable has been a wonderful way to teach the habits of going for a shower, or getting ready for bed at the right time. If it’s on the timetable, then it happen.
Aspies may find it difficult to drag their attention away from something that absorbs them, and so you are likely to need to use their name when you are calling them for something. In school, teachers often find that if they say ‘boys’ or ‘the green table’ or even ‘that half of the class’, Aspies won’t realise they are included unless their name is used. They have a tendency to take things literally. This can be funny – when you say ‘I’ve got eyes in the back of my head’ and they zoom round you to check; or upsetting – when you say ‘That little girl is crying her eyes out’ and they worry; or annoying – when you say ‘It’s time for school’, and they don’t make a move because they have just taken it as information, rather than as an instruction to get ready. School need to be made aware of this too. A lot of teachers say things which include implicit information – they may say ‘I’m writing your homework on the board’ or ‘It’s time for PE’ and assume the children will understand that they should copy the homework down, or begin to get changed. If the teacher does remember to warn the children that she will be on a Course tomorrow, she may forget to add that another teacher will be taking the class.
Just because someone has Asperger Syndrome, this does not mean they might not also be naughty and it certainly does not mean that they might not be very demanding. People with Asperger Syndrome lack social and emotional empathy; so they don’t really understand how other people feel. This gives them the power to insist on whatever it is they want – unlike their siblings, they don’t mind if you are going to be upset. And when they are small, it’s often easy to let them have their own way – it’s nothing much, let them stay up, have that toy, watch that programme. But this means that they go on expecting to be able to organise things their way. They can be very insistent and, as parents, you have to make sure that they learn to compromise. Sometimes it is important for the whole family to go to the shops, or go on the bus, or for the child to get dressed appropriately and quite quickly. It’s important that the child is not allowed to dictate what the family does – his brothers and sisters have the right to family trips they would enjoy.
Many children with Asperger Syndrome do not translate the things they feel in the same way as the rest of us. Their senses seem either to be heightened or dulled. So a child may not be able to tolerate the touch of some fabrics and textiles, he may be genuinely distressed by the feeling of some types of trousers or wool or Wellingtons etc. In this situation, all you can reasonably do is find what they can wear and buy lots of it: if this means that your child only wears tracksuit bottoms, or never wears a shirt, that probably can be accommodated. And if your child is one of those who cannot bear their feet being touched, maybe it will be easier to ask the child to step in talcum powder, or draw round their foot and take the imprint with you when buying shoes, rather than force you both through the torment of a number of shoe shops.
Some children find the smell of some things quite painful. This begins often when they are small – it’s not done to annoy. It seems to be the same as hating the smell of smoking, only much more so. If your child hates certain smells, you can help by finding a smell he can tolerate. Then make a pad which you soak in a smell he enjoys, so that he can use this to mask the others when he is distressed. One school went further than this and used lemon smelling cleaning stuff everywhere to enable a child to cope.
Sometimes it’s the smell that makes food unpalatable to a child. Sometimes it’s the texture. Many children find it hard to eat onions or mushrooms which they find ’slippery’. But a number of children seem to have a heightened sense of taste and can distinguish between different brands of sliced bread, hating all but one. Of course, these children all had to try the food in the first place – when we find a child who ‘will only eat a certain brand of tacos’, it’s worth remembering that he was not born this way, but once tried it and liked it. So keep encouraging your child to try and taste small portions of new foods, one day, he will enjoy something new.
Remember too, that most children seem to eat an adequate diet: if he eats like a mouse but is still growing and appears well, don’t worry. Some parents find that the child does not recognise when he is hungry, others don’t know when he is full. Some children have to be almost forced to eat, if you can, make the child join you at a table at meal times so that he becomes used to regular meal times. Other children complain constantly that they’re hungry. Sometimes they mean they are thirsty – it can be difficult to distinguish between the sensations. Other times, it seems to be habit, or a failure to recognise the ‘full feeling’. These children need to be given regular meals of a reasonable size, but not more. No 11 year old really needs four Sunday Dinners or 5 baked potatoes for tea. Be clear and firm about what can be eaten and when
Sound is difficult for some children. They seem to find some noises tooooo loud and painful. Luckily, now it is acceptable for people to go round with headphones on. If your child enjoys some music, encourage them to listen to their choice in supermarkets and take control of their sound environment. Even if they don’t like music, they can use headphones to deaden the noise round about them. Some children take control of their sound environment by making noises – in this way, they can block out sounds they dislike or find harsh. When this happens in school, teachers worry that this is distracting the other children. If your child is doing this, try to work out what is causing the problem, and this could lead you to a solution
You may find that your child suddenly seems to see something and you lose his attention. This seems to be another of those occasions when the sensory response is more than you would expect. Often their attention is drawn by shiny or moving objects that you might barely notice. You may find your child almost drowning in the experience. Often they are happier with patterns than with pictures of situations.
Some children with Aspergers seem to get too much information from something they see – perhaps being terrified by feet, or pictures of spiders. Many don’t find photographs very relevant and appear disinterested in pictures of the family. Some children say they are distracted by the expressions on faces, others don’t recognise the ages of different people but see them all as the same.
Interpretation seems to be the problem with pain. Many Aspies respond very normally to pain: they hurt, they cry. Some children don’t. These children fall over, but don’t cry. And when you ask ‘did you hurt yourself?’ they look puzzled. They come home from school with bruises but genuinely can’t explain how it happened. This has two difficult consequences. The child with this problem may hurt himself badly and you may be unaware – one child had a broken collar bone for a couple of days, and the hospital was highly sceptical. Another had a ruptured appendix for four days before parents noticed she was walking a little oddly. The more common problem is that a child who does not feel much pain does not understand that he might have hurt others – you know, when you say to a child ‘that hurt’ and he hits himself in the same way to check. Brain scans show that the nerves are working appropriately. It seems that the child just can’t interpret the messages in the usual way
Similarly, some children don’t seem to receive the messages telling them to go to the toilet. It is common for eight year old boys to be so absorbed in a game that they have to make a last minute dash to do a poo – less common with older children, and quite uncommon for a wee. If this is a problem for your child, it helps to make regular times to go to the loo. Some children – and adults – use a timer on a watch as a reminder
Language is always thought of as an enormous problem for children with Asperger Syndrome, but this is not always the case. Part of the diagnosis is that language development is normal and not delayed. The difficulty when it arises comes from the child’s tendency to take things literally. We use a vast number of phrases that do not intend what they actually say: bored to death, raining cats and dogs, he’s sharp as a knife, you eat with your eyes, someone’s walking on my grave, were your ears burning? As well as all those things said as a joke: hurry up or I’ll have to lock you in; you’re so lovely, I could eat you up; if I eat any more, I’ll burst.
A real difficulty for many Aspies is that they say what they mean, they tell the truth. If asked whether they like a new haircut, they will have no qualms about saying ‘No’. And similarly, if asked whether they like a present, they will happily say that it’s not what they wanted. Of more difficulty, perhaps, is the spontaneous utterance: look at that fat lady; isn’t that man ugly?; why is she dressed like a tramp? – acceptable and possibly cute in a four year old. Not at all nice in a bigger child.
Social understanding and Theory of Mind
Theory of Mind is one of the things that Aspies find very difficult, but underpins many of the others. For example, if a three year old sits with his Mum and they see a toy being put under the middle of three cups, and Mum then leaves the room; if the toy is then moved underneath another cup, most children will realise that Mum can’t know this has been moved. The child with Aspergers or Autism will think that because he knows it has moved, so will his Mum. This may improve a little with age, but it means that Aspies find it hard to think how someone else might be thinking.
I have very rarely found that someone with Asperger Syndrome will lie. Solicitors find them painfully honest as they will insist on telling the truth, even if they have committed an awful crime. When they are suspected of lying, they usually have been asked a wrong question. So that the child who said he had not started the fire alarm, answered No because he had tripped and fallen on it. Similarly, the child who argued that he had not pushed into the front of the line, had actually pushed in third in the line. So the most useful approach is often to ask What happened/ rather than Did you do…?
And they can keep promises – if told not to tell Mummy what has been bought as a present, they won’t – unless Mummy asks what has been bought for her present. This reflects the difficulty in understanding how other people think, and therefore sticking to the rules as understood.
Remember that many Aspies find it hard to understand more than precisely what is said. Because Aspies find it hard to work out what is going on, they sometimes take control of the situation, so that they can understand what is happening. They might try to insist that friends play their game, so that they can decide what is to happen when, but this is more to understand what is the game, than just being bossy. Children can often cope very well when they are small, and the games are usually quite clear – as children become more imaginative and one might suddenly say ‘let’s all be aliens’, the Aspie is left confused. He then retires hurt or offended OR tries to change the rules back OR hits someone. Similarly, Aspies have difficulty in understanding the idea of Teams. The child enjoys playing football and scoring, so when he gets the ball, he runs with it until he can score. He may cope better in goal, where he has not to play as part of a team, but he won’t understand that the others are very keen to win and desperate about losing – a 14 -1 defeat will not seem awful. Dealing with this sort of thing is a challenge and children on the spectrum often do better playing as an individual [tennis, swimming, ice-skating etc] than as part of a team.
These have been in use for number of years, and are considered in detail by Carol Grey. http://www.thegraycenter.org/socialstories has written books about it. This site will help you to write stories appropriate to your situation. Ideally you compose these with your child – consider a situation that is problematic like going out to play, going for a haircut etc, and write a story of several sentences encompassing the event and ways of dealing with it. The story talks about why something needs to happen, and the choices that might occur. Example: you might start with something like: When my hair gets too long, it needs to be cut. If I don’t get it cut, I won’t be able to see. Mum/Dad will take me to the barbers. We will sit by the door. The barber will say Hello. I might have to wait if he is busy. He might be busy cutting someone else’s hair. If he is busy, I can read a magazine or do a drawing [or play with my toys, or look in a mirror] etc. By anticipating what might happen, you are rehearsing it and giving the child the courage and the means to deal with it. Then read the story before you go, so that he knows what is going to happen.
Some children with Asperger Syndrome have significant difficulties with Eye Contact. The rest of take this sort of thing for granted. During a conversation with one person, we look at them and then look away and then look back again. We don’t learn rules about this, we just do it. Aspies may find this difficult. Some children look into the other’s face and do not look away; this is scary to the other person [after two minutes of direct eye contact, I would probably confess to everything]. Other children seem unable to look another in the eye at all. This is perceived as rude and as if the child is not paying attention. I usually suggest that the Aspie chooses a spot between the other person’s eyes above the nose and looks there – this appears to be comfortable for the Aspie and looks fine to the other person. Some children prefer to look at the mouth and that seems to be generally acceptable too. Interestingly, for some children it is just too difficult to look and listen at the same time. They get into trouble with teachers for not watching as he gives the lesson, perhaps even as parents you find it irritating. It is often a much better idea to stand at about 45degrees to the child, so that you are available but not blocking.
Children with Aspergers need structure to understand what is happening, and therefore find it highly important to keep to the rules. It seems to be more important for them than for most children to obey. And since they do not always find it easy to understand what is going on and what is required, they have to concentrate very hard. As a result, Aspies often become quite stressed and tired during a school day. Some children respond by becoming difficult in class, making noises or not working; most children maintain the facade in school but become very difficult as soon as they reach home with tantrums and shouting and upset. The easiest way to deal with this is to ask school to arrange and permit some ‘down-time’ for the child. Just before things are likely to get too much, the child is given 10/15 minutes of peace and quiet reading or going on a computer, alone or with a helper or friend. It may be appropriate to have this happen at a break time so the child does not have to go outside to play; however, often the child needs that time to run about, and time should be arranged during a lesson.
Many young children have a particular interest, often in Thomas the Tank Engine, or in dinosaurs. Children with Aspergers sometimes take this to extremes. They are fascinated by their special interest and find out everything they can. This interest sometimes changes after a while but there does not seem to be anything to be done to point the child in a particular direction. So if he decides he is interested in Dyson Hoovers, Star Wars, the disposition of ships before the Battle of Trafalgar or Gaudi’s architecture [all things I now know a lot about!!], that’s it. The big problem arises when this becomes the only thing the child will talk about. An easy rule is to specify for how long you are prepared to talk about the special topic, and then say ‘stop’. In an ideal world, children find friends who share their interests; Aspies may not recognise the facial expression that says ‘Enough’.
The children often need to have their things in a particular order: they like the cars lined up and the bed just-so, the DVDs in a special order, they need their clothes to be put exactly where they belong, and their food served as it always is. This is not always convenient so try to reach a compromise, perhaps your child can keep the order, but the toys are not allowed in the middle of the main room. A useful idea if your child enjoys making models but is reluctant to take the lego to pieces, is to take photos of the good models, and keep a file of photos as a record.
Some children have serious problems with getting to sleep or staying asleep. Research suggests that this may be a difficulty for more than half the children with Asperger Syndrome. I read a suggestion that this reflects poor sleep control mechanisms, and another suggesting that there is a failure to synchronise with the external environment so that melatonin is not made appropriately. This translates generally into difficulty in getting to sleep and it is disheartening, when you have small children, to find them still awake when you are going to bed. There appears to be virtually no research into this at present.
The National Autistic Society suggests a number of causes and helpful ideas. http://www.nas.org.uk/nas A sleep diary to establish where the difficulty lies, is a good start. Younger children are more likely to need your support than older ones who can be allowed to stay alone with quiet music, television, books, puzzles etc. All children will benefit from a structured bedtime and a quiet time before bed. It is important to keep the child safe, so it may be important to lock some doors. They need to be reassured that it’s fine if they can’t sleep, but they must stay in their room. Make sure there is nothing frightening in the room – shadows can be scary – or outside the room when noises can seem very strange at night-time. Some children enjoy luminous stars and planets around the ceiling, many need a night light. Lavender oil relaxes some people and a bed-time massage might help others to feel more ready to sleep. Relaxation techniques or a hypnosis tape to be used at bedtime might help. Or none of the above. Doctors might offer to prescribe melatonin – which you can buy over the counter in Hong Kong, the U.S.A. etc – but this does not help everyone. In the end, everyone has to deal with their own sleep strengths and weaknesses and your child has to learn to amuse himself while not yet sleeping. This is often a lonely time, so allow the child access to peaceful entertainment.
Some children have a much healthier self-regard than others. However, children who are aware that they have significant difficulties that keep them apart from their peers are almost guaranteed to have low self-esteem. And this is exacerbated by sleep problems, bullying, difficulties with school-work, relationship problems etc. Clearly, self-esteem issues are common in children with Asperger Syndrome. I am taking for granted that you tell them how much you love and are proud of themStudies show that children who are given help with Social Skills and are able to translate this into real life situations, develop higher self-esteem, and some children benefit from Cognitive Behavioural Therapy
As parents, there are several strands that you should keep an eye on. Check that school is satisfactory. Involve any local educational support teams to advise the school on how best to help. Make sure that your child is not being bullied, check that they can access school work, make sure that they can cope with playtimes and dinner hours – more and more schools offer rooms where children can be quiet, play chess or do something structured. Encourage the use of Social Stories at home or school so that the difficulties can be discussed, prepared for and eased.
Aspies are often perfectionists, and therefore often feel that they are letting people down when they do not do something perfectly. Teach them rules about doing their best, encourage them to notice all they do achieve. Because they are perfectionists, they often avoid situations where they are afraid of failing. Encourage – even sometimes bully – your child to take risks, maybe coming out with you for a short while, or going into a social situation, and then emphasise the things they have done well. Success in one situation can give the confidence to tackle another new thing.