Finding Asperger Syndrome In The Family Second Edition

A Book of Answers

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• Publisher: Straightforward Publishing Digital
• Year: 2013
• Print ISBN: 9781847163295
• eBook ISBN: 9781847163851
• Topic: Psychology
• Subtopic: Autism Spectrum Disorders
• Index: Psychology

This bestselling book in the Emerald Series is a comprehensive and accessible guide to Autism, Asperger syndrome and their effects on children and family. Not everyone facing the autism spectrum for the first time is ready for complicated or hard to digest material. This book is invaluable in that it takes the form of providing answers to the key questions which are most often raised, and is aimed at the absolute beginner in this field. It will prove invaluable to all those who wish to understand more about this complex area, whether parent or professional.

Part One: “Why does he do that?” Understanding your young child’s AS behaviour

1.1 Why does she sometimes appear to be deaf?

It is not uncommon to find that a parent has had their child’s hearing checked early in investigations to find out why she was “different” from other children. Her lack of turning to her parents’ voices as a baby, her lack of response later to calls and questions, together with her slow or ‘robotic’ use of speech, could quite easily have suggested hearing loss (and it is only sensible to have this eliminated as a cause first.) In fact, although her hearing is fine, she may appear to be deaf - in a sense may actually BE deaf - when she is engrossed in another activity, particularly a visual one. Whereas most of us are able to filter information from other senses when using one (for example, getting ‘lost’ in a book or staring blindly into space when on the telephone) we retain the ability to register enough from the other senses to keep them useful. A child with autism’s filtering system may, in a way, be too efficient. When reading, for example, her non-visual senses may be so effectively filtered out that she may genuinely not hear, smell or taste, feel heat or cold.

An understanding of this can help tremendously when dealing with her. Rather than yelling pointlessly and jumping up and down in fury because she is “ignoring you”, it helps to understand that you need to get her attention, and to wait until that attention has truly shifted to you, before you make a request. It makes the world of difference!

1.2 Why can’t he keep still?

Constant movement may be a sign that your child needs the sensory feedback from repositioning himself in space. The constant wriggling might be irritating but if you watch him closely you will probably find that he is doing it unconsciously and indeed that it is even an outward sign of inner thought. Try allowing him to kneel or stand to work, or try pushing a tennis ball onto one leg of his chair (the resulting ‘wobble’ may be all he needs to stay alert.) You could also try allowing breaks for physical activity when he is thinking – for example a few bounces on the trampoline, or just a trip to another room to fetch something you have ‘forgotten’.

Some therapists suggest the wearing of a weighted jacket may help the child to feel grounded (carrying a rucksack works too.) A less intrusive suggestion is probably to allow a ‘twiddle object’ to aid concentration. The important thing to note is that usually the movements serve a very specific and useful purpose, so simply trying to stop the child is unlikely to work. (See Q1.11 ‘Why buy her a trampoline?’)

Incidentally, it is also worth investigating whether the wriggling is a result of other sensory distress – in other words, is he sitting on a pin, or is his bladder uncomfortably full? It’s important not to over-look the obvious!

1.3 Why doesn’t he cry?

One of the more alarming aspects of AS can be if the child appears not to feel pain. He may fall over, knock himself, and show no signs of distress. He doesn’t make a fuss about such things because they simply do not appear to hurt him.

It is now understood that most people with conditions on the autistic spectrum may experience sensory information very differently from other people. This is crucial information for understanding behaviour. The child with AS may not volunteer information that he is in pain. It is for his parents or teachers, if his behaviour becomes erratic, if he is being “difficult” or upset, to play the detective. Close cross-questioning (“Do you have a pain in your tummy?” “Do you have a pain in your ear?”) may yield a surprised “yes”, and a trip to the doctor will identify, perhaps, an ear infection. Clearly, an understanding of this sensory difference is essential in helping your child to manage his AS. Some individuals may not even be at the stage where they recognise that they are hurt at all, in which case ‘playing the detective’ becomes doubly important.

1.4 Why doesn’t she look at me?

Lack of eye contact is frequently (but by no means always) found in children with AS. It may be because the child finds it difficult to process both: to look as well as to listen. It may also be that she finds that eye contact feels so intrusive that it is actually painful.

Some programmes stress the need to encourage eye contact to improve social interaction, while other professionals (and many individuals with AS themselves) suggest that insisting on eye contact may actually interfere with the person’s ability to interact. It is clear in some situations that to insist on eye contact is to decrease the individual’s actual ability to process the information they need in order to interact, essentially reducing skills rather than improving them. In other cases peripheral vision may be better than ‘head on’ in which case while we assume that the individual is not looking, she may well actually be doing so.

As with most things, perhaps the emphasis should be on the word ‘encourage’ and away from the notion of ‘insist’. If you feel that your child really hasn’t understood a need to look at or towards the speaker, then gentle encouragement to do so may help, particularly if insistence on looking into the eyes is avoided. It may help avoid accusations of ‘not listening’ in school if she learns that it is diplomatic to at least face towards the speaker. On the other hand, if she really does prefer not to make eye contact, and feels that she can listen better if looking elsewhere, then surely, with a little understanding from those around her, that can be accommodated. Teaching her tips such as ‘watching the words come out of the mouth’ or perhaps ‘focussing on the bridge of the nose’ may help her reach a compromise which is comfortable for all.

1.5 Why doesn’t she smile?

I think what this question means is: “why doesn’t she smile at me?” After all, she probably does smile and laugh to herself when amused, excited, tickled etc., and may well do so at inappropriate times – such as when another child bangs his head. On the other hand, she may not use smiling as social intercourse. She may not smile back at someone who smiles at her, or smile to indicate pleasure at seeing her mother at the end of the school day. This does not indicate a gloomy personality, nor even lack of pleasure, but is more likely to be because she has not understood that a smile is a message. She has not realised that often we smile not because we are happy, but in order to make the person smiled at happy! Like most things this can be taught to ease social relationships (although there is a danger that a taught smile will remain a rather artificial smile), but she may never really see the need to this spontaneously. I think this is a problem for us, as a family, to deal with rather than being a problem directly for the child herself. It is well worth working out how your child does display affection and to grow to appreciate that, rather than always seeking non-autistic forms of affection that may be less evident. (See also Q1.45 ‘Doesn’t he care when I cry?’)

1.6 Why is he such a messy eater?

Underdeveloped motor skills are common in children with AS. Getting food from plate to mouth using knife, fork and spoon is a skilful task, and it seems to take these children longer to master it than most. There is also an element of social pressure at work on children without autism to help them get it right – it is not ‘nice’ to be messy with your food after a certain age. This pressure to conform is likely to be weaker on the child with AS, who does not greatly notice the effect of his eating on those around him. He may also be interested in the texture of food – which may lead to a certain amount of food-handling – or conversely he may be repulsed by the touch of metal to his mouth – which would lead to the same thing. As with so many things to do with AS, as parent you may have to ‘play detective’ to find out what is happening with your particular child at this particular time before you can even begin to put it right. One of the keys then is to make sure that the child is motivated to do what you want him to do – which, generally speaking, won’t be to please those around or to receive social praise. Make sure that the motivating factors are from his perspective, not yours.

1.7 Why does he hate having his hair cut?

A visit to the hairdresser can be a nightmare for (and with!) a small child with autism. We are not the only family I’ve met who have been asked to leave a salon with our child’s hair half cut because of the screams of anguish coming from him. The invasion of personal space, the smells, the sounds, the feel of the cut hair on neck and back – all seem to contribute to this being a particularly distressing experience.

So why did we do it? Why, when the experience clearly terrified our child, did we put a neat and respectable appearance above his well being? Perhaps it is because as parents we were already feeling under threat because our child was not developing ‘normally’. Whatever the reason, it took us a long while to realise that we were getting our priorities a little out of order when we insisted on returning visit after disastrous visit to the hairdressing salon. The alternative was to buy trimmers and do a rather bad job of it ourselves, or to let his hair grow, like Samson, down to his ankles. We relented, accepting that the ‘behaviour’ was there for a reason. While we could assume to the ends of the earth that there is nothing frightening or worrying about getting our hair cut, we realise that we could not make this assumption on behalf of someone with AS. In fact, like many problems, when we ‘gave up’, it sorted itself out. We took Sam with us when we all went to the hairdresser and let him sit in the corner reading a book, and the time came when he requested a haircut for himself. Perhaps one day we’ll learn to trust his lead! (See Q1.30 ‘How do we get him to the dentist?’)

1.8 Why can’t she follow instructions?

The answer is, of course, that she can – but that the way the instructions are given may need looking at. Verbal instructions are insubstantial. After you have said them they ‘disappear’ in that nothing concrete remains to remind the person. It may be helpful if you include visual prompts – either in written form or in the form of sequenced pictures. These break down a task into its component parts, and therefore make each part far easier to follow. “Get ready for school” as an instruction becomes a sequenced series of visual prompts, ordering what is required (‘fetch your homework’, ‘get your bag’, ‘pack your lunch’, put on your shoes’) and in what order. In time this sequence becomes secure and the prompts can be phased out, although many people continue to find reassurance in breaking down a challenge into similar, concrete steps (think how many of us faced with a difficult day begin by making a list.) And how many of us could follow the instruction “build the flat-packed book-case” without following the pictures? (See Q2.14 ‘Why write her notes?’)

1.9 Why does he roar like a tiger when he’s angry?

Anger is an alarming emotion, both to witness and to feel. Many children with AS seem not to recognise the warning signs that they are becoming angry, and so appear to switch suddenly from calm to furious. These ‘melt-downs’ are distressing for everyone, not least for the child with AS, who must feel totally overwhelmed.

One way to help is to explore the early symptoms of anger with your child. Does he start to feel tense? Does he push his teeth together? Does he find that his hands squeeze together onto his fingers? Also important is to give your child a way of expressing that he is feeling these early signs (see Q.2.15 ‘What are Angry Cards?’)

However, you may still find that your child ‘borrows’ expressions of anger, and of other emotions, from films, television or the computer. This is his way of finding a way to express emotions, and although it may appear slightly forced or artificial, the emotions are genuine. Roaring like a tiger may be an expression of anger which he has copied from a cartoon, but it is nevertheless valid.

1.10 Why were we told to get him a gym ball?

One of the seemingly more whacky techniques which may be useful for the child with autism is that of applying deep pressure. Some children with AS have problems with sensory processing, and it may be that not enough messages get back to the child’s brain for him to orientate himself. Your son may feel literally as if he is floating off into space. If he becomes jittery and sensory seeking (usually jumping, spinning or throwing himself around) it seems that deep pressure can be a tremendous relief. You could try squashing him under mats or pillows, or rolling him under a gym ball, gradually increasing the amount of weight and pressure. You may be able to almost see the steam coming out of his ears as he relaxes. Temple Grandin, who is a highly respected writer on the subject of Autism and who has autism herself, used her understanding of deep pressure to help in her design for better cattle-handling equipment. The technique can be incorporated into a ‘sensory diet’ which you find works best for your child. Jumping on the trampoline, balancing on a balance board, throwing and catching, tensing and relaxing muscles, swinging and spinning can all be practised to help your child develop his sensory processing ability. (See Q1.2 ‘Why can’t he keep still?’)

1.11 Why buy her a trampoline?

Part of the sensory processing problems often associated with AS is a need for the child to keep moving to orientate herself in space. Your daughter may crave the sensory feedback of jumping and balancing. Left to herself she would probably jump up and down on the sofa, or on the bed, no doubt breaking each and getting into plenty of trouble. The trampoline gives an outlet for this energy and allows her to give herself the sensory input she needs. It is also great fun, particularly when combined with catching, heading or hitting a ball. It is all excellent at helping her develop her sensory processing, and her interaction – and it keeps her out of trouble. Not bad for the price.

1.12 Why is he so ‘into’ superheroes?

The great thing about super-heroes is that there is no moral ambiguity – and very little character development. Superheroes are good and super-villains are bad, and ultimately the good always conquers. Who wouldn’t be attracted to such a universe?

For the child with AS this security must be very reassuring. He knows with whom he should identify, he knows what he would want to do in that position, he knows what is right. The real world is even more confusing to him than it is to the rest of us; you can’t tell who is good and who is bad, people can be kind one moment and angry the next, can say one thing and mean something else entirely. It is not surprising that a small boy with AS would want to be the big, strong hero who knows exactly what to do to save the day... and has the means to do it.

(Note: be careful about making sure the child understands the difference between fact and fiction. ‘Playing’ at being a superhero is fine; actually thinking that you are and have the power to fly, for example, is most categorically not!)

1.13 Why won’t he let me give him a hug?

I think the answer to this may be in the wording of the question. Being ‘given’ a hug is to have something done to you, usually by someone bigger and stronger, and involving an element of capture or restraint. Put like that, it doesn’t sound so attractive!

Work on getting to a point where your son gives you a hug. He may never want to; he may prefer to indicate the same affection by a high five, or even by a finger-tip-to-finger-tip action. Whatever gesture you eventually use to show affection, i...

Table of contents

• Cover
• Title
• Copyright
• Introduction to the second edition
• Foreword
• Contents
• Part One “Why Does He Do That? Understanding Your Young Child’s AS Behaviour
• Part Two: “Why Does it All Have To Change?” Helping The Child With Autism To Grow Up?
• Part Three: “But I Bought You Flowers Two Years Ago!” Loving An Adult With AS
• Part Four: The Big Question
• ...and Part Five: Why Can’t I have Asperger Syndrome?
• Useful Contacts and Further Addresses
• Index
• Titles in the Emerald Series