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!
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!
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.
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.
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?’)
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.
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?’)
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?’)
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.
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?’)
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.
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!)
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, it must be voluntary, and it must be able to be instigated – and escaped from – by your son. (See Q.1.33 ‘Does this mean he’ll never love us?’)
Children with AS may have poor spatial awareness and may not understand the concept of ‘personal space’ (see Q1.32 ‘How do I get him to understand about personal space?’). They may stand uncomfortably close to someone they are talking to, or – for example – make everyone in a lift uncomfortable by standing at right angles to everyone else. This may explain the bumping – or it may just be because it is fun. If you don’t get any negative social feedback from doing it, you can see that bumping into people must have its plusses. You can see how strong you are, people make amusing grunts and squeaking noises when bumped, you get a nice bit of sensory feedback from the collision – in fact the whole thing is a lot like dodgem cars. Understanding all this is one thing, but you still have to stop it. Sometimes calmly stating to the child that it is not allowed to do it and that continuing to do so will lead to loss of some privilege or treat, is the only way. After all, we can’t all go around having this much fun...!
As far as I am aware, scientists are still researching why disturbed sleep patterns seem so prevalent amongst individuals with conditions on the autistic spectrum. Some research seems to point towards altered levels of Melatonin, although that doesn’t seem to explain the whole picture. Meanwhile, while scientists search for a reason and for a remedy, we as parents are left managing the nights. Steering a child with AS through the days can seem challenging enough; sleep deprivation may be the last straw.
Undoubtedly many parents do resort to sedative drugs, at least in the short term, to help manage the problem. This is one solution, especially in an emergency where the well being of the parent is seriously at risk. In the longer term, however, managing your child’s wakefulness is likely to be a more satisfactory solution.
To be honest, it is not how much your child sleeps which matters (as long as he remains well) it is whether you get time when he does not need your attention, including sufficient time to sleep yourself. One advantage of his AS in this is that he is likely to be pretty self-sufficient, if given the opportunity. Given a good and changing supply of books around his special interest, possibly some toys, pens and pencils and a good supply of drawing paper he may well be happy to entertain himself. If you make rules very clear – for example, no coming downstairs after a certain time – you should be able to relax. If you don’t feel you can switch off in case he starts wandering around the house after you are asleep, fit a motion sensor with an alarm on the stairs. Sometimes it pays to be pragmatic; he may not need to sleep, but you do - so do what you have to do to be confident that he is safe, and then grant yourself some time “off”. (See Q2.8 ‘Why does she like sleeping in a sleeping bag?’
One of the early features of AS is often a qualitatively ‘odd’ way of talking. The person may talk with a flat tone, lacking the ups and downs of natural speech. He may also miss the subtleties of communication, where a raised tone at the end of a comment changes it into a question, or where a pause after a comment indicates that it is a joke. Quite often this ties in with the next question (Q1.17 ‘Why does he say rude things?’), since the tone may make what he says appear rude, even when the content is harmless. One way to teach that how things are said can be as important as what is said is to go through a sentence, emphasising each word in turn and looking at how that changes the meaning. Thus a simple sentence, “I need a drink”, can have three meanings. “I need a drink” (never mind what anyone else needs), “I need a drink” (I’m getting desperate here) or “I need a drink” (not another sandwich). The game can be fun, and does help the child with AS to see that different emphasis on different words can radically change meaning. (See Q1.21 ‘Why take him to a Speech and Language Therapist?)
Interestingly, this is an example of things that are a problem to others, not to the young child with AS - yet. Your child is probably not embarrassed to ask the one-eyed stranger why his eye fell out, to tell his grandmother that her teeth are yellow or to inform his headmistress in assembly that what she is saying is incorrect. It is important to remember that he is not being rude, just unaware of the effect of his curiosity or honesty on its recipient. Unfortunately, this is one of the ways that AS gets ‘worse’ in time. It is just about acceptable for such remarks from a five-year-old, but not from a ten-year-old. As the child with AS gets older, his lack of social understanding makes him highly vulnerable. Youths hanging around on the park roundabout may find it funny when a toddler tells them that it is bad for them to smoke; they are unlikely to be so tolerant of the same lecture from an adolescent. The person with autism does not say rude things, but the person he speaks to may well hear rude things, and that is a very real danger. (See Q1.29 ‘Should we explain she’s not just ‘naughty’ to strangers?’)
To be honest, shopping doesn’t tend to bring out the best in most children, so perhaps this can at least in part be put down to the ‘child’ part of a-child-with-autism, and not the AS part. However, it’s also worth bearing in mind that many people are paid a great deal of money to make shopping as stimulating, as eye-catching, as attention-grabbing as possible. We may largely filter out the clashing colours, the visual jokes, the music, the smells, the cold of the freezer aisles... but these may still be getting through to your son. If he behaves ‘badly’ when shopping, he is probably trying to tell you something. In the end it may be simplest to listen, and shop when he’s not with you, or to use the Internet. Some battles just aren’t worth fighting. In addition, if you choose the Internet shopping option, it may be a good idea to involve your son. Learning new skills such as this can be hugely beneficial later on in life.
The same thing on DVD stays the same thing. It is predictable, it always delivers the end you want and it doesn’t depend on you to do it. Television, even more than the computer, is the ultimate non-participation activity. It can be trusted. We are quick to see this as a problem – as the child wasting her time on a pointless, repetitive activity. It makes us uncomfortable.
When I have ‘had enough’ and feel I need a break I tend to lie in the bath, often re-reading an old book or magazine. I am a ‘typically functioning adult’, so no one tries to stop me. And I do, eventually, get out of the bath and return to my normal life.
If your child needs to watch the same thing over and over on television, I would not see that as a problem. I would have thought that the total time spent watching television, and therefore not interacting with anyone in any sort of social context, is more relevant. If you decide that an hour’s television after school is fair enough to allow her to unwind, does it really matter if that hour is spent watching David Attenborough wildlife programmes, repeats of Mr Bean or the same old episode of The Simpsons? She probably knows what she needs best to relax and recharge before you tempt her back out into social interaction.
Shutting off the senses is a common phenomenon in all young children – not just those with AS – and indeed even in adults. If you are frightened, aren’t you tempted to close your eyes? I think it is part of the “if I hide they won’t find me” approach to fear management!
In a sense, the child with AS who covers his ears is being more efficient. Not hearing allows you to still see (and assess, and presumably run from) what alarms you, while minimising how much it frightens you. Next time you are watching a horror film, try it out for yourself. You can cover your eyes (or hide behind the cushion), but you are still frightened, and what’s more, you miss the plot. Alternatively, try pressing the ‘mute’ button. Now you can see what is going on, but somehow it no longer seems so terrible.
Covering his ears may be a general sign that your son is vulnerable to aural overload. He may be shutting out the sound, and not actually be frightened at all. Whatever his reason, discomfort or fear, he is indicating distress, and, as in Q2.9 ‘Why is he still frightened of stupid things?’, whether you share that distress or not, it needs to be taken seriously.
Although it is not strictly speaking a Speech and Language disorder, AS often manifests itself to the outside world as such. It is, after all, a condition which affects communication. Specialist Speech and Language therapists do much more than deal with ‘speech impediments’ such as stammers and lisps. Their interest in AS language development is in the child’s use of social, semantic and pragmatic language. How does the child use language to communicate? How does the language use of a child with AS differ from that of a neuro-typical child? Does the child use language in a concrete, inflexible way? Does he bring a literal translation to metaphorical language? If you tell him he’s ‘in the doghouse’ or that your ‘head is splitting’, do these expressions make any sense to him at all?
Speech and Language specialists are also well placed to assess your son’s level of language understanding. The verbosity of some children with AS can mask lack of understanding. Equally, some children’s halting speech style and apparent slow answering of questions can hide great intelligence. Of all the outward visible signs of the neuro-developmental difference inside the child with AS, speech and language is probably the most profound. It is what your son says which makes you realise how differently he perceives the world.
If communication is the key, both to understanding your son’s differences and to explaining the world’s differences to your son, then speech and language are the most powerful tools which you have at your disposal. If you can find a Speech and Language specialist with a real interest in and understanding of the place of language in autism, then he or she may well become your son’s most powerful ally in his managing of his AS. (See also Q1.1‘Why does she sometimes appear to be deaf?’ Q2.5 ‘Why does it take her so long to answer a questions?’ Q1.17 ‘Why does he say rude things?’ Q1.16 ‘Why does she talk in a funny voice?’)
One of the more alarming traits of AS in young children is their apparent lack of fear of getting lost. Most children (and indeed most creatures in the animal kingdom) instinctively stay close to their parents and become distressed if separated from them. Our children seem to lack this basic self-preservation instinct. They would, sadly, be the isolated baby lamb picked off by the wolf pack or the penguin chick freezing alone in the cold. They wander off to look at what interests them and it is for us to try to keep up. The ‘invisible rubber band’ which normally connects child to parent seems to be broken.
Because of this it is perhaps even more important for children with AS than for most children to have a strategy in place should they find themselves ‘lost’. The old advice to find a policeman is really not of much use. What we have found which seems to work well is the advice to ”‘find a woman with a child younger than you, and say, ‘please help me, I have lost my parents’ “ (Initially we said, “find a woman with a pushchair”, but the only time our son did get lost was in a supermarket, and all the mothers seemed to have their children in the trolleys!) This is quite specific advice, which should allow her to target someone who is likely to help her (and who is less likely to harm her), and give her the phrase to use. The alternative is to say to go to the people on the tills, but this only works in shops. In addition, as the child gets older it may be necessary to supplement the advice with a card that indicates that your daughter has AS, together with your mobile number so you can be contacted. The National Autistic Society provide cards which can be carried which give a simple explanation of AS to help avoid confusion or the accusation that your daughter’s manner means that she is being rude. Alternatively you may want to make your own, with your daughter’s input, which she can use should this situation arise.
Part of being a parent is being prepared to do things that our children don’t like. From the time you held your new-born baby’s foot out for the ‘heel-prick’ blood-test, even though you know it would make her cry, you have been prepared to do some things, sometimes, for other reasons than to make your daughter immediately happy. Hard though it is, we sometimes have to take the grief because we believe that overall what we are doing is for a greater good.
Much of our time as parents of a child with AS is spent trying to stop that child from getting upset. ‘Melt-downs’ are distressing for all, and are a sign that something is wrong in your child’s world or in the way they can communicate about it. ‘Meltdowns’ are those particularly autistic type of distress when your child has gone beyond upset, beyond angry...beyond reason. We work (hard, often!) at understanding and then avoiding the triggers for these.
There are, however, perfectly normal periods of ‘upset’ for a child with AS, just as for any other child. You would not be doing your child a favour if at the first sign of a down-turned mouth you gave in to what she wanted. Give her ways of communicating why she wants/doesn’t want something, give her warnings and schedules so that she can prepare for things she doesn’t like, and be prepared to listen when she REALLY doesn’t want to do something... but beyond that, stick to your guns about the normal stuff. Your daughter needs to learn the same lessons as any other child: that sometimes we all have to do things which are boring, or which aren’t our first choice, or have to stop doing what we enjoy. The tricky part with a child with AS is to differentiate with a child’s natural disinclination to – for example – go shopping, and a real sensory distress at going shopping, or between her reluctance to turn off the computer and her lack of understanding that she had to turn it off. Give her more chance than you would most children to ‘put her case’, in order to compensate for communication difficulties, then stick to your instincts. It’s not a parent’s job to be popular!
As discussed in Q2.18 ‘How can we help him make friends?’, this is not the easy answer to friendship which it appears to be at first glance. Two children with AS have double the lack of tact and social skill. You may find you have twice the problem (although conversely two individuals who are not bothered by social faux pas with one another can get along extremely well.)
As your son gets older you may find that someone who shares his intensity of interest may make an ideal friend. In other words, the friendship is not based on the fact of their shared ‘disability’, but on the fact that - at last! - here is someone who cares about robotic inventions as much as your son. You may find that the two of them will be very happy, and companionable, researching their interest together. They may not, actually, interact all that much with each other, which brings you to a rich source of interaction for the older child with AS: the Internet. Here it is possible to find all sorts of people who share the same interests, often to the same intensity, and who make very little personal demand on each other. The child with AS born this century is so much luckier, in this, than any of his predecessors. The Internet could have been invented as his ideal communication tool!
A word of caution: you do need to monitor your son’s use of the net and make sure he is absolutely clear about internet safety rules. As with all forms of communication, his naivety makes him vulnerable. That aside, it may be necessary to impose some rules to make sure that you allow time for your son to continue to practice his interaction skills out in the real world. The Internet may largely by-pass AS problems, but it does little to help the person to overcome them. He needs real interaction with real people - often - if he is to hope to develop his skills. (See also Q2.20 ‘How much computer time should we allow?’)
Moving house is a major disruption for all concerned, but perhaps especially for someone who has autism. The loss of security and familiarity can be hard, and the person may not recognise a new house as ‘home’.
Preparation is the key. Tell your child as soon as you are sure where you are moving to (but not too early – make sure that you have signed the deal first, otherwise you will have to deal with further insecurity and loss if that sale or rental falls through). Keep telling him what may seem obvious to you, in other words that he is moving too, as is the sofa, the computer, teddy, his little sister, you... You may find that you need to reassure him about many things (“Yes, we are taking the tin opener”), and have to deal with grief about leaving what cannot be taken (“No, we are leaving this bath, but there is another bath in the new house.”) Take pictures of the new house, and draw plans to show him where the furniture, computer, television and so on will be. It may be helpful to spend considerable time on his bedroom, agreeing what colour it will be painted (the same colour as his current room, perhaps), and making sure that his bed, his chest of drawers, his lampshade all move straight across, and are positioned in the same place relative to each other. He is going to need this ‘safe haven’. This is not a good time to upgrade his furniture and get him a new big-boy bed.
Packing can be traumatic in itself. Although most of us use packing up a house as a chance to have a good clear-out, this is likely to cause distress in a child with AS, who is already feeling the strain. It’s okay to pack EVERYTHING from his room – broken toys, games with the bits lost, freebies from junk-food restaurants and all. If your son knows that ALL his toys and possessions will be in the new house, he is likely to be reassured. It can be a good idea to pack up and move out as much of his ‘stuff’ from his room, gradually, as the move approaches, so that on the day he just has his bed, his furniture, his curtains and one box of toys and books. All these can be moved and unpacked on the day, so that the new room is immediately a close approximation of the old. I would suggest making up the bed in the new house with the bedding taken straight off the old bed (rather than with clean bedding), and similarly letting him sleep in the same pyjamas. As humans we can discount the reassuring effect of our own smell.
Moving house is a major upheaval, but sometimes it can’t be helped. Keep reassuring your child, and be prepared for a setback in anxiety-based behaviour. This can be a time for the strategic use of the computer. If you buy him his absolutely most-wanted computer game just before the move and let him have free access to using it, and then make sure the computer is the first thing to be working in the new house and again let him get on with it, he may almost not notice the change of venue!
Of course, the house is only the start. What you will have done is to move your child’s whole environment. You will, no doubt, have addressed the possible big issues such as a new school, but you may not have thought about all the other little things. Even if you have moved locally so that most things stay the same, the move will mean that you take different routes to familiar localities, and even this can be distressing for the child with autism. Approaching the swimming pool from the north, and turning right into the car park is just not the same as coming from the south and turning left.
Many children with AS are already fanatically cautious eaters. Getting a balanced diet into them can be a monumental battle in its own right, and it is not surprising that parents already facing this challenge should quail when advised by some well-meaning acquaintance that a strict avoidance diet is needed. It may be more than they can bear.
If it is, relax and wait until you’re ready. Trying different diet combinations (most usually eliminating dairy products – casein – and gluten) is an increasingly common approach, and a great many parents believe it makes a difference. Medical science is lagging behind and there are still very few indications that there is any sound scientific basis for these diets but nonetheless they may be well worth trying for yourselves.
Removing these elements from your child’s diet may not be easy. For a start, your child may be totally hooked, and suffer withdrawal symptoms when deprived of his ‘fix’. Children denied gluten in their diet have been known to chew carpet tiles to satisfy their cravings. The diets are also often complicated (it takes a while to navigate your way around the ingredients) and can be expensive. In addition it provides a further barrier to social inclusion. The sharing of a meal is a fundamental piece of social glue; not being able to accept that slice of birthday cake can make your child even further excluded.
It may be that the time will come when you will decide to try experimenting with diet as a way to manage your child’s symptoms. It is certainly an avenue worth exploring – but don’t let yourself be bullied into it. You can be made to feel like a bad parent if you don’t immediately embrace a whole different way of eating for your whole family, and this ‘blame culture’ is not helpful. Remember, none of this is a matter of ‘fault’.
There is a growing market ‘out there’ aiming to persuade you that this de contaminant or this mineral supplement will make all the difference to your child with autism. It is very hard as parents to resist these pressures. After all, what if they are right?
One thing is certain and that is that no one can follow all the advice that is around about autism. For one thing, much of it is contradictory. Some of it is based on sound scientific research and some, to be frank, is not. I think it is for each individual family to pick their own way through this minefield. My advice would be to pace yourself as you decide what treatments, supplements or programmes you are going to try with your child. Some may well be of benefit, but none is a cure. Sometimes it is easier to immerse yourself in trying to find solutions than it is to get on with enjoying life with your child, as he is. In our family, we have taken some of the supplements, followed some of the diets, taken some of the ‘programmes’. Our son is emerging from this mis-matched childhood as a happy and confident adolescent – and I can’t say whether that is due to him, the pills, or us. We’re just delighted he is happy to be himself. Take the pills with a pinch of salt – and good luck!
All children should probably be taught to swim, purely on safety grounds. In the case of a child with AS this may be particularly important if his awareness of danger is poor, and if his sensory seeking makes him more likely to want to throw himself into ponds. Our Sam used to love jumping into deep water long before he could swim (terrifying!) Conventional swimming lessons are not always of much use, since they tend to concentrate on water confidence and on stroke technique rather than on drowning-prevention in our ‘unusual’ children. You may also find that your son finds swimming classes noisy and disorientating. Most pools offer 1:1 alternatives to class, although if these take place during public swimming sessions there may well still be too much noise and distraction. Talk to your pool manager, who should have a disability policy in place and who may be able to accommodate your son at quieter times. Sometimes the self taught approach is best – you may find that the child will observe others in the pool – and when he is ready take the plunge himself. However you eventually manage it, it really is important that you find a way to teach him to at least get to the surface to breathe.
This will vary tremendously from occasion to occasion. Sometimes, if trouble is escalating out of hand, explaining that your daughter has autism can stop an irate stranger in his tracks. Sometimes it is the only way to diffuse a situation. On the other hand, it is important not to use the diagnosis as a ‘get out’. You are not doing your daughter any favours if you give the impression that having autism is an excuse. Having AS may explain why she behaves as she does, and may make it harder for her to behave as others do, but it is not an excuse not to try to learn social rules. For example, she may not recognise that there is a queue at the library. If she pushes in and someone shouts at her, informing the stranger that she has AS may prevent the damage of being attacked for doing something your daughter did not realise was wrong. However, now that she does realise there is a queue, she will need to join it. Help her with this, teach her how to manage queuing – don’t use her diagnosis as a free pass to get your books stamped more quickly! (See Q1.17 ‘Why does he say rude things?’)
...with difficulty! Visits to the dentist, to have new shoes fitted, to the hairdresser (see Q1.7 ‘Why does he hate having his hair cut?’) can be a real problem for the child with AS.
Preparation and desensitisation can both help. Talk your child through what a dentist does. Get some books on teeth and oral care. Let your child (if he wants to) have a good look around inside your mouth. Talk to him about what a dentist does and why. If possible, visit the dentist and let your child set the pace. He may just want to look round. He may be willing to sit in the chair. He may let the dentist put the smooth mirror in his mouth and have a look around... Most dentists are becoming much better at dealing with a whole range of people who find them frightening. Tell your dentist in advance that your child has autism. If he does not allow plenty of time and caution in his approach, then it is probably worth changing your dentist.
Remember that the law is on your side here – dentists have to make ‘reasonable adjustments’ to accommodate your child so make sure they are aware of what your child’s needs are (e.g. not having to wait in the busy waiting room) with plenty of advance warning.
There are broadly two different types of obsessions. One type is a Special Interest which dominates the person’s life, to the potential detriment of other interests. The other is anxiety behaviour, such as constant hand washing, or the need to turn off all the electrical sockets before leaving the house. They are different, and have different causes.
Special Interests are a feature of most people with autism’s lives. The person develops an interest, and wants to spend more time on this, to know more about it, to read about it, memorise facts about it, live it to an extent which is outside what could be considered usual, and to an extent which some might consider obsessional. Sometimes we find ourselves, even unwittingly, encouraging this. “How do I stop my son’s obsession with Thomas the Tank Engine?” asks the mother, holding the hand of a little boy wearing Thomas shirt, hat, socks and shoes, holding a Thomas toy, reading a Thomas book and who sleeps in Thomas pyjamas under a Thomas duvet! There is a contradiction here: the mother is worried that her son’s interest is obsessional, yet she knows how much pleasure it gives him and so buys him the gifts. She already knows that the way to get his interest and interaction is to use his interest. She knows that he is far more likely to learn to count if he is counting trucks which need to be taken to the branch-line, and far more likely to sit at table if his food is on a Thomas plate. What she worries about, perhaps, is that this is it: for the rest of this life her son is going to be wearing Thomas the Tank engine socks! In fact, this is unlikely. Experience shows that it is the intensity of the interest that remains constant in AS, not the subject itself. Her son’s interest is likely to shift (perhaps to dinosaurs or planets), and then shift again.
Ultimately, he will become interested in a subject which may well become the centre of his studies and indeed his career. The single-mindedness of the person with AS is unusual, and can be wearing for the rest of the family in its various manifestations, but is not, in itself, necessarily a bad thing. In fact, for some individuals this side of AS is exactly what will lead to a good job in the longer term. (See Q2.19 ‘Should we go along with his current special interest?’).
More worrying are the obsessions to do with anxiety. These can seriously interfere with the person’s life. If the person feels he has to wash his hands for a full minute before touching food, this can increase to five minute, ten minutes, twenty. Or he may feel he has to wash his hands, dry them, then wash them again ...and again. It is important to address the anxiety in this type of situation, not target the action itself. If the person really believes that they are protected by this degree of hand washing, it is verging on the inhuman to lock the bathroom door and prevent access. Although this type of behaviour, and this level of anxiety, are prevalent in people with AS, there is nothing in the condition itself which means it is inevitable. Work with the person with autism’s stress levels, look at his environment, both sensory and social, find out just how intolerable various parts of his day may be – and do something to change them. This sort of obsessional behaviour is a sign of distress. The last thing the person needs is his routines (which may be the only thing allowing him to cope) being targeted.
A child with AS may not understand that we have really quite specific, although usually unspoken, rules about how close we get to another person. A mother may hug a child, a close friend may ruffle a child’s hair, an acquaintance may offer to shake hands. Getting personal space wrong is one of the aspects of AS which seems to most bother those without AS. Someone you don’t know that well standing too close to you, perhaps reaching out and touching you can be immensely threatening to some people.
Try drawing a set of concentric circles for your son. Put his name or picture in the middle, and then add people in ever widening circles out from that. You might put parents and siblings in the first circle out from the middle, other family members in the next, friends and teachers in the next and so on, out to, perhaps, the postman in the outermost circle.
You then need some large sheets of paper, or the sort of yard or patio which you can draw on in chalk. Draw rings, showing that actual distance correlates to the distance of the rings on the paper. Parents are in the rings closest to the child and the child can reach out and touch them without difficulty. The teacher at school is in a further circle, so your son should try to stand at that slightly further distance. The postman may never get close enough as to be able to do more than get a wave or a shouted hello!
Of course your son, being clever, will soon spot that this doesn’t really work. Teachers move close to pupils when they are viewing their work; everyone is put on an inner-circle-of-family footing when you travel on a crowded train. You are going to have to use these as starting points for further work. Human beings are not simple, and do not obey simple rules – which is why the task facing the person with AS trying to make sense of it all is so difficult, and why we need to keep on helping as much as we can.
One of the tragedies of autism is the appearance that the child does not feel, nor crave, affection. It is very, very hard when your child wriggles out of a hug, pushes you away, scrubs off a kiss, screams when you try to hold him. The emotional effect on the parents is incalculable; it is quite frankly devastating. You may find that you have to find other ways to show emotion. The character in ‘The Curious Incident of the Dog in the Night-time’ uses a palm-to-palm gesture to replace an embrace, and you may find your own versions of this which your son prefers.
The rejection of physical gestures of affection may be sensory in nature. Your son may find the light touch of your hand actually painful. As with all sensory issues, this can be worked on as long as you follow your child’s lead. Working with deep pressure (see Q1.10 ‘Why were we told to buy him a gym ball?’) can help enormously. (See also Q1.13 ‘Why won’t he let me give him a hug?’)
Giving your child control over how much and what sort of physical contact you share is vital. We most of us remember the distaste of some aunt or other such relative who insisted on hugging us to her bosom and kissing us when we really didn’t want to go anywhere near her! Daft though it may sound, in our case we found that spending a lot of time lying around near our son – but not touching him – worked wonders. By lying down when he was sitting, kneeling or crouching, we ceased to be a threat and he could choose whether or not to approach us. Turning this into various games where he was in charge (his sitting on us, riding on our backs, tickling us etc.) moved on to a point where he is very tactile and openly affectionate. This (clearly) is nice for us, but is also useful for him. He is not defensive now about any touch and is able to sit in the middle of a group of people without minding if he is knocked into or jostled. Whatever solution you eventually find to help your child express his affection, be assured that it is there. Having autism most definitely does not mean that you are unable to love. If you keep on loving him, and show it in a huge variety of ways (reading this book, for example, is a manifestation of it – it shows you care), he will love you back, however he may ultimately express it.
The diagnosis of Autism Spectrum conditions is done through clinical observation. One element of this is through the elimination of other possibilities. Only when you are sure that your daughter has no hearing loss can you start to investigate her aural sensory sensitivity due to AS; only when you are sure that her eyesight is not at fault can you consider her use of eye contact. Even when other, more ‘simple’ possibilities have been ruled out, diagnosis of AS is a complex matter. It requires detailed and exact observation by highly qualified and experienced specialists. As yet there is no blood test or brain scan to diagnose autism (although brain scans which show difference in the autistic brain have been developed so that this may well become available in the future.) It is a big diagnosis – you want to be sure it is right. Unfortunately it is still the case that some educational psychologists or paediatricians are giving a label of “assumed Asperger syndrome” or “Autistic Traits” often based on the shortest of interviews with the child, or even entirely on second-hand, anecdotal evidence. If you do not feel your child has been fully assessed, including having cognitive assessments and the ‘ADOS’ (Autistic Diagnostic Observation Schedule) – or similar, or has not been properly screened to make sure that the diagnosis is correct, you have the right to a fuller procedure. There are centres of excellence offering full and accurate diagnosis of Asperger syndrome, most noticeably, and nationally, the Social Communication Disorders Clinic at Great Ormond Street Hospital. A diagnosis, done properly, can take time and may involve many people, but it is reassuring to know that it is accurate. The NAS has some excellent fact sheets regarding diagnosis available to download from their website.
The arbitrary guidelines used to define this term seem to me rather sad. What ’gifted and talented’ is taken to mean is: ‘is his IQ within certain parameters?’ or ‘is he exceptional?’ Children with AS traditionally do rather poorer than their true level at IQ tests, so that - although probably fairer than judging on impression or school performance alone - this is probably still not a fair measure. And doesn’t the fact that he has AS mean by definition that he is exceptional? At various points in this book, children with AS have been described as seeing things we don’t see, hearing things we don’t hear, having different memory abilities, having the fiercest concentration, inhabiting a different world. Of course your son is gifted and talented, although he may or may not fulfil the rather narrow criteria for that title as laid down by various organisations and departments. This is their loss, if he doesn’t – not his. (See also Q1.47 ‘Has she got any special talents?’)
Possibly. Dyslexia and Asperger syndrome are different conditions, yet both provide barriers to academic learning for otherwise intelligent people, and both seem to indicate that the brain is working differently. Differently, not less well. It may seem a contradiction, but a child with AS who learned to read almost magically at the age of three, can still be dyslexic. He may find the deconstruction of sight-absorbed words impossible, so that he can read the word ‘cataclysmic’ and recognise instantly what it means, but could not tell you with what letter sound it begins. This lack of phonic understanding may be part of the reason why he is a poor writer. Another, also linked to dyslexia, may be a problem with spatial processing and organisation. Remembering the orientation of the actual letters can be a problem, as can the physical process of getting them down on paper (see Q2.4 ‘Why can’t he write?’)
Your son may have both dyslexia and Asperger syndrome. My advice would be to investigate ways of supporting people with dyslexia and seeing if they help your son, rather than getting too hung up on another label. That said, a formal dyslexia diagnosis may grant him some advantages in education later, such as longer time in exams or the use of a scribe. It may be that, ultimately, you may have to pursue each condition separately.
There have been a number of studies looking into AS characteristics in siblings of a child with autism and it seems that some aspects which specialists look for in a child with autism may appear also in a brother or sister. Our daughter Elizabeth, for example, is a far pickier eater than Sam is, and for a long while would eat only things which were yellow (...and how autistic does that sound!) The point is that she has a highly developed social awareness, instinctively regulates her language depending on her audience, and interprets the subtlest of body and verbal language cues – and has done so from a very early age. Sam may be willing to eat a wider variety of food, but he doesn’t really ‘get’ people – and that’s why he is the one with the diagnosis of autism.
That said, having one child diagnosed with a condition on the autistic spectrum does make it more likely, statistically, that a sibling will also have a condition on the spectrum. Families may find that they have two, three, four – any number of children, all with an ASD... and that the parents may in turn decide to pursue a diagnosis. If you are worried about any family member’s social communication and interaction skills, it may be worth seeking an expert opinion. On the other hand, if you have no worries except that someone likes to follow a certain path to school or to read the same book over and over again at bedtime, don’t let your hyper-sensitivity to autism make you see issues which aren’t there.
The decision as to whether to tell your child about his diagnosis, or at least when to tell him, can be a tricky one. Many people are reluctant to share the label with a young child, at least until they have had time to become relaxed with the term themselves. On the other hand, you are going to have to make some explanation to your son as to why he is seeing so many specialists, and he may well already be hyper-sensitive to the belief that there is something ‘wrong’ with him. Understanding that he has something called autism, and that this at least largely explains why he is having any difficulties he is having, may well come as a huge relief to him. In addition to this it is worth considering that it is your child’s right to understand who he is and this does include having an understanding that he has AS. Dr Luke Beardon, Senior Lecture in Autism at Sheffield Hallam University (who wrote the foreword to this book), says that there need to be five elements in place prior to ‘breaking the news’: “intellectual ability, cognitive ability, receptive communicative ability, motivation/interest, and post diagnostic support.” He believes that these, rather than a specific age, should determine when the fact of the diagnosis should be shared.
We told Sam right from the beginning of investigations that the various doctors and specialists were interested in him because of his ‘Special Brain’. Later he learned to call this his Asperger Brain, and he is immensely proud to have it. We have presented it to both our children, always, as a positive thing – to the extent that our daughter asked the final question in this book. Perhaps we have done too good a job..!
There have been many parents I have met who, when they told their parents were met with the response that a) there was nothing wrong with the child which a bit more discipline/firmness/fresh air/vegetables wouldn’t fix and b) there’s nothing odd about him because he’s just like Uncle X was at his age (see Q4.2 ‘How did she get it?’). Neither response is helpful. Of course, not all grandparents are the same and nor will be their response. Possibly just because AS has a genetic element, so that there is a feeling that it emerges from family rather than being completely random, it can be an emotive, difficult subject for the previous generation to absorb. Lorna Wing and Judith Gould only brought Hans Asperger’s work to general attention in 1979, so it is not something, yet, which grandparents will have come across in their own child-rearing experience. This in itself can lead to frustration and guilt that their own children were not given more support a generation ago. It may take another generation, when we who have been parents to children with a diagnosis of AS become grandparents, before full family groups are at ease with having Asperger syndrome amongst them.
Friends are a lot easier than family, precisely because they are not related by blood and are therefore out of that equation. Also, although we all do (however seldom we admit it!) take a lively interest in how others raise their children and compare it to how we do so with ours, there isn’t quite the same emotional intensity if we choose to do it differently to our friends, as if we choose to do it differently to our parents! It is likely that good friends will have been with you on the journey as you began to worry, began to suspect... eventually got a diagnosis on your child, so that the ‘telling them’ doesn’t become an issue. More problematic is the knock-on effect of telling less good friends. We found we couldn’t get a babysitter for months after our son was ‘re-categorised’, although he was the same boy, who behaved in the same way as he had always done...
In the end, the whole issue of disclosure is a complicated one. Your son has the right to privacy, and, as someone with a hidden condition, the right to keep that private to himself if he chooses. On the other hand, explaining about his autism is the only way to minimise misunderstandings and avoid trouble. On the whole, we have found that openness is our chosen path, on the basis that if you treat something like an embarrassing secret it is more likely to become one. It must, though, be an individual decision for each family. There is no right or wrong answer.
Indeed, can she go to a special school? There are a very limited number of schools which specialise for children with AS, together with a handful of specialised units. Much more likely is that you will be offered inclusion into mainstream for your daughter. How you manage education is a subject for a book in its own right (..and, indeed, a subject I have tackled in more details in my other books – see reading list.) Education is a huge issue: See Q2.24 ‘What should we do if she’s bullied at school?’ Q2.35 ‘If he’s so clever, why is he doing so badly at school?’ and Q2.37 ‘Does he have to go to school?’ for a few further comments on this subject.
Asking this question is an answer in itself. If you are aware that your other children are likely to feel left out by your overwhelming concern for your child with AS you are likely also to take care to reassure them that you still have time for them. It can be tough to be merely ‘normal’; make sure you make your other children feel special too. And while we’re on the subject, try to keep some time and attention for your partner too – and, just as important, for yourself. This ‘problem’ (which perhaps isn’t such a problem after all) is going to be around for a long time. Pace yourself!
There may be things your child with AS chooses to avoid. If, for example, the noise and sensory stimulation of the swimming pool is uncomfortable to him, clearly this does not make sense for a family outing. On the other hand, if going swimming is your neuro-typical daughter’s absolute favourite family trip, stopping is going to lead (quite naturally) to resentment.
It may be that you cannot do some things as a family, and that you need to split into groups, or let your other children go with friends. On the other hand, there are still things you can do – specifically anything you all enjoyed doing before receiving a diagnosis. Having a label hasn’t changed your child. If he hated going swimming before, then it probably wasn’t much of a family treat anyway. If he loved it, then knowing he has AS (and reading in your ‘Guide to Asperger syndrome’ leaflet that some children with AS do not enjoy it) does not change anything. All children with AS are different. Trust your child, not some fictitious ‘autism norm’.
The three elements used by Lorna Wing to define autism (the so-called “Triad of Impairment”) were an impairment of Social Relationships, an impairment of Social Communication and an impairment of Social Understanding or Imagination. This use of the word ‘imagination’ has led to the misconception that people with AS have poor imagination. This is not the case.
“Social imagination” could perhaps be re–described as “social empathy”, the ability to understand what another is thinking or feeling. This is not what is commonly meant by imagination. It is possible a person with AS may have an unusually highly developed ability to occupy an imaginary world. This ability in some people with AS to ‘tune out’ the world around them and instead to retreat to another place is striking. It is quite likely that your son has a potent imagination. Indeed, it may be so strong that at times it rivals – and even takes over from – the physical world around him.
Many young children with AS seem to have little concept of crying as an expression of distress. Our Sam once commented that I had “water coming out of my eyes”. More importantly, children with AS seem to have no understanding that another person’s distress may have a relevance to them.
Diplomacy in this can, of course, be taught. It is possible to teach a child what sadness looks like, and to practice some models of appropriate behaviour when it is encountered. For example, you could teach ‘If another child falls down in the playground and cries, squat down beside him and say, “Are you okay?”’ (Bear in mind that if you are to teach this it is useful also to teach that he should listen to the reply!)
Whether this is ever translated into real concern is debatable. Part of the nature of AS is this lack of instinctive empathy into how another person is feeling. Certainly it will take time and practice, and some complex work on practical suggestions. It will also take work on the fact that sympathy can offer comfort, even if it gives no practical help. Most of us have felt that impotent feeling of helplessness when someone is upset, hurt, bereaved. There is, literally, nothing we can do to help. The idea that doing nothing, that just ‘being there’ does (somehow) help is one which most of us find very hard to fully grasp. It may be that, for a person with AS, the same concept, that somehow sympathy can help even when of no practical benefit, is just even harder to grasp still.
There are different aspects to sadness – feeling it and expressing it. It may be that a child with AS has trouble feeling sadness, or it may be that he merely has trouble expressing sadness.
Death is likely to be approached more prosaically by someone with AS than by most. After all, it is inevitable, it is a natural part of the life cycle and it is to be expected, especially if someone is old or ill. The process of the heart stopping beating, the cells dying, even decomposition are all subjects which may well fascinate a child with AS, and although his expressions of them may seem inappropriate, they are not intended to be. Death is interesting.
Loss, on the other hand, is more mysterious. A person with AS is likely to feel loss just as acutely as anyone else (indeed perhaps more so in that it is change on a fundamental level), although he may not have the communication skills to express it, nor the emotional dexterity to understand it himself. It should not be assumed that, just because he does not express sadness, a person with AS is not experiencing bereavement as acutely as anyone else.
One of the irritations of autism is that the media has always had a fascination with what have been termed ‘Savants’, people with autism who also possess astonishing ‘islands’ of skill or talent. Films such as ‘Rainman’ have not helped this perception that having autism must inevitably mean that the person also has a hidden and spectacular ‘gift’. This is only very rarely the case.
Having said that, your daughter may well perceive the world through her senses in a different way to you. She may see things you don’t see or hear things you don’t hear. This may, of course, result in distress, and awareness of sensory difference is one of the more important elements of understanding and helping people with conditions on the autistic spectrum. However, it may also result in advantages. A person with AS may be aware of the shape of images and to separate these shapes from the ‘whole’ of the picture. Sometimes this may result in quite astonishing artwork. Similarly, a person with AS may have a different system for filing and retrieving memories. She may have a particularly strong ability to memorise phrases, reproducing them exactly as heard (complete with accent!), without necessarily having much interest in their intrinsic meaning. This may result in ability to remember musical phrases with the same accuracy...
These ‘quirks’ are far from unusual in people with autism - indeed, some researchers suggest some such savant abilities in up to a quarter of all people with autism. If viewed affectionately and with appreciation they can be a huge help to preserving self-esteem. We all need to find things we are good at. Your daughter may or may not have particular ‘odd’ special talents. Certainly it is worth looking out for what she is good at, because it may be something which would otherwise be missed by conventional education. Whether unusual or not, your daughter will have talents, and concentrating on what she is good at, rather than on her supposed ‘deficits’ has got to be a positive approach. (See Q1.35 ‘Is he Gifted and Talented?’)
Toileting problems remain some of the most difficult of those associated with the autistic spectrum – most difficult for the parents, for the siblings, for others and therefore ultimately for the self-esteem of the individual. Wetting or soiling yourself marks you as “different” in a uniquely unpleasant way.
Unfortunately, these problems are also quite common in children (and some adults) with autism and Asperger syndrome and are likely be due to a combination of sensory processing differences and problems with communication. The child may be unable to ‘read’ the internal signs and doesn’t realise she needs ‘to go’ until it is almost – or actually – too late, and when she does realise she may have difficulty in gaining an adult’s attention or communicating the fact and its urgency. This physiological inability to read the internal signals means that, however much you jump up and down in frustrated fury, your child simply may not be able to predict when waste matter is going to be passed. When you accept that, you realise that rewards and punishments simply are not going to work; you are going to have to try something far more practical.
Getting your child’s body into a secure routine is likely to be a help, as is teaching your child to manage a routine. If you can get it so that she always passes solid waste in the mornings, after breakfast and before school, then merely ensuring that you allow sufficient time, and making sure that she remembers to ‘try’ may be enough to circumnavigate the problem. Similarly, if you establish a routine that she always goes to pass urine at both break and lunch times at school, she will probably remain dry at school. Hard though it is, there is little to be done but to be patient, keep prompting her, don’t make too big a deal of mistakes and remember that you are not alone. The supermarkets wouldn’t sell age 8+ size Pull-Ups (and a great many adult incontinence products too) if it wasn’t financially in their interest to do so.
There is much in Christmas (or any other major family festival) which makes it a problem for someone with autism. As mentioned in Q2.11 ‘Why does he have to spoil every big event?’, usual routines change, people come to stay, meal times are different and may involve different foods, certain clothes may be worn, new toys are received but there isn’t space or time to play with them... and generally there tends to be a level of stress in the air which is upsetting for many children with AS. As a result the child with AS tries to go off by himself, gets into trouble for being anti-social, refuses to eat the Christmas dinner, tells Uncle Jim that his present is the wrong sort of Lego, won’t give Auntie May a goodbye kiss, has a tantrum, hits his brother ...and his parents are left in despair!
In the face of this, cancelling family festivals may seem like a good idea, but in fact all that is needed is to have your child with autism’s needs addressed. If, rather than opening ten presents he would be happier opening one and then being allowed to go off and play with it, perhaps this can be arranged. If his favourite food is cold baked beans on a separate plate to hot mashed potatoes, this doesn’t seem impossible to accommodate into the family dinner. In other words, your child has autism all year round. It is unrealistic to expect him to stop having it just at the time you are adding in other stresses. Start with planning an autism-friendly festival for one member of your family, and then see just how much you can add in, without disruption, for everyone else. It can still be a happy day!
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