Books on Autism

Autism Support Program

Finding out that your beloved child has autism can be one of the most sinking feelings that you've ever had. You feel helpless at the fact that your child may not be able to do many of the things that other children the same age can do. Biomedical therapy research has however shown that autism is not always something that will stay forever the same way. Biomedical therapy has been show to help children with autism in ways that have never before been available. There are six steps to the plan to cure your child: Reduce the toxic load your child is experiencing, heal the digestive system, increase body nutrient levels, support metabolism and biochemistry, remove heavy metals and toxins, and optimize long-term health. While this will not cure autism per se, you will be able to help your child live a better quality of life because of it. And don't they deserve as good a quality of life as anyone else? More here...

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Asperger Syndrome a mild form of autism

Before you all cry out in horror at this subtitle, let me tell you that it was written with much sarcasm Those of you parenting, teaching or caring for someone with Asperger Syndrome or with AS yourself will know only too well that the difficulties that come along with being 'differently wired' are far from mild. However, a simple definition is needed in order to explain the group of symptoms which, when found together, are called Asperger Syndrome. AS is a form ofautism, part of the autistic spectrum, an autistic spectrum disorder .call it what you will. Though it manifests itself in many ways, autism is autism. As I have already written in Chapter 4 on autism, both autism and Asperger Syndrome are characterized by the triad of impairments in Repetitive behaviours and obsessions along with the triad of impairments all blend together to produce the cocktail of characteristics we know as Asperger Syndrome. AS is a form of autism and therefore many of the difficulties and interventions...

Autism and Asperger Syndrome

Tony Attwood's homepage with lots of information about all aspects of Asperger Syndrome. http www.autism-society.org Autism Society of America (ASA). Online Asperger Syndrome Support (OASIS) (American site). http www.autismsociety.on.ca Autism Society Ontario. http www.autism.org stories.html A website all about Social Stories.

Anxieties of Asperger Syndrome

Unfortunately the world is fraught with danger for any child. It is a sad fact but we have to teach our children far more than basic safety issues such as safety in the home and road safety. From a very early age both at home and at school, children are taught to say no to strangers, what to do if someone touches them in an unwanted manner.it seems that all sorts of sinister dangers lurk around the corner. For any child these are hard messages to grasp but for a child with Asperger Syndrome understanding such abstract messages is as hard as walking on stilts on thin ice (Holliday-Willey 1999). How I managed to do so without collapsing I don't know, but I told Luke that I was nipping out to buy him a drink and dashed outside to make a phone call to Mick Connelly, the head of the local complex difficulties team. Hardly able to speak for sobbing, I blurted out what had happened and he managed to calm me down and told me to go back in again and ask them to phone him. When I returned to...

Asperger Syndrome in the family

I truly believe that the best way to discover the depths and intricacies of the AS mind is to listen to what an AS person has to say for him- or herself (stating the obvious rather ). It is therefore for that reason (and a little bit of motherly pride) that I have quoted from and mentioned Luke's book Freaks, Geeks and Asperger Syndrome many times already in earlier chapters. Luke gives a valuable insight into how he thinks, feels

Asperger Syndrome in adolescence

Whilst Luke is one of five teenagers living in the Jackson household, having AS means that he dances to a rather different tune to the rest of the children, so although I have written a chapter later on about 'typically developing' adolescents (Chapter 9), I thought it necessary to write a separate brief section about AS and adolescence. The book Asperger Syndrome in Adolescence, edited by Liane Holliday-Willey, is an excellent read and co-written by many authors (myselfbeing one of them) it gives valuable help and information about virtually every previously untouched topic such as sexuality, depression, making friends and many others. I therefore am not going to say too much here other than I strongly advise parents of AS adolescents to read this book. the need to find a sense of identity make adolescence an immensely trying time for a young person - indeed it is a trying time for a parent too At a time of life when peer pressure is at its greatest and social rules and rituals are...

Siblings of children with autism and AS

That is guaranteed to turn such harmony squarely on its head is the presence of a child with autism (or indeed any other special need). Whilst we all have to learn in life that some things just aren't fair, siblings of children with special needs learn this far more quickly than others. Ultimately I believe this to be a good thing and I truly believe that my girls are already much more understanding and accepting of difference, much more able to look beneath the surface rather than judging people, and much more able to tolerate and even see the funny side of others' 'unusual' antics. At these difficult times in their lives when they are living under the stress of exams and their hormones are on the rampage, I don't think the girls appreciate such a blessing just yet Each member of a family unit subconsciously teaches another many things. However, when a child has autism or indeed any other kind of disability, then that teaching tends to become more obvious. Siblings of children with...

An Autism Cocktail

Add a liberal dose of autism, a pinch of Asperger Syndrome, a generous helping of AD HD and a dash of sensory and motor problems to an already frantic family and one may be excused for thinking that it would be a recipe for disaster In fact the situation is quite the opposite .it produces a taste of diversity, a zest for knowledge and a yearning for understanding. Many people object to the use of a spectrum as an analogy to define the many variations of autism. It is considered to be too two dimensional. Too flat. Whilst many people prefer to speak of the autistic landscape or continuum, I personally believe that no terminology can be fully accurate in describing the complexities of autism and related differences and I like to think of a kaleidoscope of colour, so the term 'spectrum' suits me. I love kaleidoscopes and the way a different picture is made with each twist. As the sun shines through my bevelled windows, a myriad of different hues and colours are thrown around the room and...

Autism

As I have just written about the cocktail of different kinds of autism both within my family and in each of my boys, I apologize for the fact that I am now going to write mainly about Ben. The main reason for this is because although Luke has Asperger Syndrome, a form of autism, although Joe has AD HD and a kaleidoscope of different autistic spectrum 'differences' and Matthew has many autistic ways, woven into the dyspraxia and dyslexia, autism is Ben's main diagnosis and his endearing (and not so endearing ) ways are more likely to be recognized by any parents and professionals reading this. One thing Ben did like to do was to head bang. I spent much ofmy life attempting to pre-empt a head banging session and prevent him from hurting himself (or me) and I have lost count of the number of bloody noses and swollen lips I have suffered. I never was quite sure why Ben was so hellbent on banging his head. I was very careful not to expose him too much to places with bright lights, loud or...

Autism nightmares

It is crucial that all parents and professionals recognize that autistic children think differently, feel differently and react differently to typically developing children. It is imperative that we teach their siblings this and that we are confident that others understand just how impor tant safety issues are - particularly for autistic children who often react differently to pain or cannot tell us they are in distress. Our educational psychologist, Julia Leach, talks of looking at the world through 'autism lenses' (Cumine, Leach and Stevenson 1998), asking Where could they hide How could they escape What could they use to stand on in order to reach doors with high locks What could do them harm if they tried to eat it or put it in their mouths For non verbal children there is also the issue of what would happen if they did manage to get out. One idea is to get the child used to wearing an SOS talisman with contact details. (OK, easier said than done I know ) I may seem paranoid, but...

Holidays Coping with Change

Autism nightmares 205 A tribute to Emma-Jane 207 AD HD hazards 211 Anxieties of Asperger Syndrome 213 Dangers of dyspraxia 217 Safety suggestions 220 DSM-IV 315.4 - Diagnostic criteria for Developmental Coordination Disorder (Dyspraxia) 239 DSM-IV 299.00 - Diagnostic criteria for Autistic Disorder 239 DSM-IV and DSM-IV 315.00 - Diagnostic criteria for Reading Disorder (Dyslexia) 241 DSM-IV 299.80 -Diagnostic criteria for Asperger's Disorder 241 Gillbergs criteria for Asperger's Disorder 242

Language and the ADHD child

All things need to be spelled out clearly to any child, but a child on the autistic spectrum needs things spelling out to them more than most. In a way they are like foreigners. (Jackson 2002) Luke wrote this in his book Freaks, Geeks and Asperger Syndrome and while he wrote the book primarily about Asperger Syndrome, he does live with Joe and is aware of his needs too. As he says, the need to speak clearly and precisely is important for all of our colourful kids. Much misunderstanding and frustration could be alleviated at school if teachers realized a child's problems in these areas and adjusted the way they spoke to the child accordingly. While children with autism are accepted to have problems with communication even if they have excellent spoken language, the speech and language problems of children with AD HD are often overlooked. According to the speech and language pathologist, Philippa Greathead (Speech-Language-Learning Centre, Westmead, NSW, Australia), the child or...

Repetitive behaviours

Many children with autism engage in some kind of self-stimulatory behaviours. Some children flap their arms or their hands, some spin things in front of their eyes, some flick their fingers .some don't do anything at all. Ben flaps his hands and spins (boy, does he spin) at home and flicks his fingers in front of his eyes. However he now does such things mainly at home, though when he is out he flicks his fingers when stressed. For me, the finger flicking when away from home is a useful indicator of Ben's stress levels and not something I need to stop. When talking about such behaviours in his book, Freaks, Geeks and Asperger Syndrome, Luke writes 'I try to find a balance between making an effort to mix with others without standing out too much, and accepting the inevitable - that I am always going to seem a little different'. Wise words indeed and as parents we can learn much from his way of thinking.

Therapies and interventions

As a parent of children with special needs, I know far too well how it feels to bombarded with information about 'treatments', therapies and interventions for our children. I also know that our job as parents is to help our children reach their full potential whatever that may be, so each of us needs to research the various methods available and decide on what we think will suit both our child's needs and the family's. In my personal opinion, the difficulties of autism need a multi-pronged approach. To only focus on the biological without also viewing things from a behavioural angle, or to work only on behaviour without addressing environmental and sensory issues, is akin to dressing a septic ulcer by sticking on a plaster. Unless antibiotics are given to clear up the infection, the underlying cause discovered and addressed and the wound cleanly dressed, then all that will happen is other ulcers will appear elsewhere. Just as a number of triggers seem to blend together to produce the...

Sensory Integration Dysfunction

Whilst apparently so different, both Joe and Ben have sensory issues that cause major problems in their everyday life. Forty years ago, Dr A. Jean Ayres, OTR, pioneered work which highlighted SID as a neurological disorder. Dr Ayres sought to explain the relationship between behaviour and the function ofthe brain and found SID to be a very real problem for many children (and adults). Again, there are differing views as to whether SID is a separate disorder or another part of the rich and colourful autistic spectrum. Personally I believe that most children with autism have sensory issues to some degree, but what sets them apart from children with only sensory issues is that the triad of impairments (see Chapter 4) and rigidity of thought is evident in every situation and not just those where they experience sensory overload.

Behaviour Modification

It is widely known that children with autism are very visual but the same techniques are rarely applied to children with AD HD. Whilst Joe has excellent language skills (understatement ), like many children with an autistic spectrum 'difference', his auditory processing skills are very weak and he is a very visual learner. I have made schedules for Joe to follow and these make a vast difference to the stress levels in our life. When he comes in from school I merely hand him a marker pen (dangerous thing to do but it works) and he proceeds to work through I can only apologize again for the fact that I seem to be jumping from one topic to another but as I have said, that is exactly how life is here a hilarious, infuriating and chaotic blend of ages, abilities and personalities. I have so far written primarily about the two youngest boys and therefore about autism and AD HD, these being their predominant diagnoses. Whilst Joe and Ben certainly make the most noise and the most mess in the...

Applied Behavioural Analysis ABA Lovaas Institute for Early Intervention

Are you left scratching your head and wondering where (or if) to start now This list of therapies and interventions merely skims the surface of the amount of approaches for parents to think about when searching for ways in which to best help their child. All I can say is to research fully, listen to other parents, and if possible watch the approach and the child. As a parent you need to find an approach that fits in with the needs of your autistic child, your family belief system and your family life as a whole and there is no reason why a package of approaches cannot be used in order to best suit your child. Much evidence suggests that early intervention in autism gives rise to a much better overall quality of life for the child (and therefore the family). If as a parent, you are still on the diagnosis treadmill, then you can still get onto the internet or into the library and find ways to help your child whilst you are waiting for an official diagnosis. Good luck

Language and communication

The impairment in communication in a person with autism can differ in its level of severity. One autistic person may never speak at all whilst another may use language well. Some children bombard people with questions or talk constantly some children have echolalia, merely repeating back what they have heard. Many autistic children simply Although Ben speaks at a very immature level with many sound systems not yet in place, and although he didn't speak at all till he was nearing five years old, a recent assessment by a speech and language therapist stated that Ben has no evidence of a language disorder. He has recently begun to speak about himself in the first person, does not confuse his pronouns too often now, and is generally progressing amazingly in both his receptive and expressive language. Nevertheless, even if Ben no longer fits the criteria for a language disorder, he certainly has an impairment in communication. To live with a child who is so literal that almost every...

A change is as good as a rest

If anyone has any ideas that a holiday away from home, familiarity and all that home life entails may actually mean a break from autism, then unfortunately my advice would be.don't bother However on the other hand you may also be pleasantly surprised. Whilst we were in Florida, Ben ate rice (a definite no in his usual fussy diet), tolerated a different yellow dummy, albeit for only ten minutes, to his usual special one, wore a pair of shorts even in the villa and hardly licked anyone or anything all the time we were away. Luke coped admirably with all aspects of the holiday and thoroughly enjoyed it and Joe delighted in having space and freedom to be as noisy and as speedy as he possibly could. Many autistic children behave very differently at school to the way they do at home or at grandparents' houses, so it may well be that they realize they are in a different environment when away on holiday and so accept change far more readily than usual. For those of you who are thinking of...

Diet and biological intervention

The Feingold diet for the USA and worldwide. http www.autismmedical.com Allergy-induced autism website with useful links and forum. The website of the Autism Research Unit containing the Sunderland Protocol A logical sequencing of biomedical interventions. http www.autism.com ari The Autistic Research Institute in San Diego. Information about recent research into autism. Organizers of DAN (Defeat Autism Now) conferences.

Further biological interventions

For Ben, Joe and Luke to get to the stage they are at now, I have researched and tried many forms of intervention, some of them biological. The Sunderland Protocol (Shattock and Whitely 2000) details a logical sequence of biological interventions, and many places, including the autism research unit in Sunderland and the Autism Research Centre in San Diego, continue to research the biological differences in autistic people, producing a growing amount of evidence that shows that autism is more than simply genetics. Other forms of biological intervention are as follows Removal of excito toxins - Aspartame (artificial sweetener) and monosodium glutamate (flavour enhancer) have been shown to have adverse effects on many people, not just those with autism. Anti fungal treatment - There is evidence that candida in the gut is linked with autism (see Useful Websites). Epsom salt baths - People with autism often have a sulphation problem (as a starting point for more information on this, see...

Teenage transformations

It is all too easy to fall into the trap of lumping my children into certain categories. The autistic ones and the teenagers. The boys and the girls. Nothing is ever so simple and nor would any of us want it to be. The different colour of each child's personality is reflected back in some way through the others and I am sure that our household, and indeed any other, would take on a different shade if a family member were removed. Each family has their own unique set of dynamics. In our family the children's personalities, different blends of hormones and different tints of autism all serve to give us our particular mix of multicoloured mayhem one is different and each hue of autism and adolescence results in a very different colour emerging. Matthew has now finished his A levels and is working through a difficult time in a need to find his way in life and search for a career. Rachel is well on the way to taking her A levels and will soon be knocking Matthew off his post as she begins...

Siblings of children with ADHD

Whilst many of the tips I have given for siblings in general and indeed, siblings with autism, may apply to families with a child with AD HD, children with AD HD have their own particular qualities that have an enormous impact on the rest of the family. In our house and I am sure in many others with an AD HD child, Joe is more often than not the aggravator. Like lighting a touch-fuse to a firework, Joe dashes around the house and amuses himself, sometimes by sneaking up to Luke and closing down one of the programmes he is working on then running off and waiting to be chased, sometimes by teaching Ben to do inappropriate things such as kick or bite someone and sometimes by poking at the girls or Matthew. In these scenarios he is often merely spoiling for a game of cat and mouse but I can fully understand how infuriating their noisy and mischievous little brother can be.

The Parents Survival Guide

If anything at all is going to be remembered from this book, I would like it to be this chapter. It is not at the end ofthe book because it is of least importance - it is here because I wanted you to remember this above all else If we as parents don't survive both mentally and physically, then our children lose their source oflove, support, encouragement and advocacy. Our children need us to be strong and well. Whether you are parenting a young child or a teenager, whether you have a large multicoloured family like my own or one or two children, whether you have children without any 'added extras' or are parenting a child with autism, AD HD, dyspraxia, dyslexia, AS or any shade in between one thing that is absolutely certain is that mentally, emotionally and physically, it is often an exhausting task and any tips that can make life that bit easier are gems to be treasured.

Parenting an ADHD child

When I listen to Luke drone on for hours on end about his current 'specialist subject' or I watch Ben spin around in circles, flicking his fingers in front of his eyes, I smile to myself on good days and other days I am crushed with feelings of despair as I worry how they will ever manage in the big wide world. One thing I do not do however, is blame myself. Even if it is not evident to those without knowledge, or in other settings when the children are running effective 'emulators', those of us who know my children can see autism quite clearly and I cannot see any way in which poor parenting skills could make children behave in such bizarre ways. Joe however, is another kettle of fish

Conclusion to the Chaos

The experiences of parenting a severely autistic child who smears poo, harms him- or herself and is unhappy with the world cannot be equated with the experiences of parenting a 'high functioning' child. Moreover the cocktail of difficulties that an impulsive AD HD child presents makes the parenting and caring experience very different to that of parenting a rule-bound AS child. Nevertheless one thing that all parents, carers and professionals dealing with any child on the autistic spectrum have in common, is recognizing that each child brings his or her own kaleidoscope ofcolour to enrich, and sometimes distort, the family dynamics.

Calming the chaos tips for mealtimes

For those of you experiencing mealtime madness either because of your autistic children and their restrictions and rigidity, because of the For those of you with children like Ben who insist on the same routine every morning, use a story board with pictures and words and detail exactly how breakfast or another meal is to be carried out. Although picture schemes such as PECS, PCS and Social Stories (see Useful Websites) are primarily for our autistic children, they also give a quick reference for our non autistic children and help them to follow the routines that are so important. If your autistic children will only have certain bowls, cups, spoons, etc. then keep them in a separate cupboard and if at all possible, buy more than one set of everything. I have lost count of the number of times we have all had to ransack the house while Ben screamed hysterically for the right spoon Although in an ideal world we would all like to have the perfect family setting and all of our children...

Looking on the positive side

Joe seems to have a 'sixth sense' and can often tell me why Ben is behaving the way he is, and when Ben was non verbal, could explain to me why he was screaming. If I ask him how he knows things, he just shrugs and says that he does - these feelings need to be recognized and nurtured. If I could charge for hiring Joe out to parents of autistic children, I would make a fortune because he can get the most 'far away' child to engage with him.

A time for everything

If you are reading this and are at this stage, indeed if you are at the unfortunate stage of realizing that your child is on the autistic spectrum but have not yet been listened to by professionals.be kind to yourself. One day that knot in the pit of your stomach will start to loosen and you will feel able to eat again, one day that unseen hand that has a vice-like grip on your heart will let go and the sadness will be replaced by relief that you can finally move forward and start to work with your child in order to help him or her and the rest of the family to live happy and fulfilling lives. Take time to grieve and cry for lost dreams, hopes and aspirations. Take time to rant and shout at the injustice of it all. However it is imperative to remember that it is our aspirations for our children that will not be realized, our expectations that we have to change and our hopes that have been shattered. Accept this grieving as natural and inevitable and indeed, indulge in it occasionally...

Language difficulties and siblings

Children can relate to how bizarre these conversations can seem to the outsider. I am sure those of you with children of any colour of the autistic spectrum will sit and smile (or groan ) as you remember similar conversations occurring in your own family. Whilst these conversations can seem hilarious to those of us who know something of how our children think and feel, they can also highlight the fact that when such conversations occur at school or other places, it is all too easy for our colourful children to be misinterpreted or bullied because oftheir differences.

A tribute to Emma Jane

I would like to say a big thank you to my lovely, brave friend Sam, who has given me permission to write about what happened to Emma-Jane in the hope that it will make everyone who works with, and cares for, an autistic child be that extra bit vigilant in their watch over him or her. As Sam, Emma-Jane's mum, underwent the early difficulties of gaining a diagnosis that so many of us parents are familiar with, she fought on in her indomitable way. Fairly early on in Emma-Jane's life, she was diagnosed with a rare genetic disorder, a ring 8 chromosome, that manifested itselfas severe autism. Meanwhile, Ben and I had been going through our own diagnostic process, the result of which you have already read about. Sam and I went everywhere together with our two little blond cherubs in tow. The children attended various therapies together, went to nursery groups together - in fact they were like twins in many ways, or opposite sides of the same coin. So different yet so alike, Ben and...

Gluten and caseinfree diet Opiod excess theory

Whilst I love my boys and their differences dearly, I would give the world to ensure they are healthy and happy. For them, that meant eradicating their bowel problems. Many children on the autistic spectrum have bowel problems - not all, but many. Indeed there seems to be a growing number of autistic children who have a combination of autism, food intolerances and bowel disorders. As I have already written in Joe's story, Joe had horrendous and seemingly inexplicable diarrhoea. Luke had always suffered from a lesser degree of diarrhoea, stomach pains and bloatedness and always looked ill, having a white face and black rings around his eyes. Ben on the other hand suffered from dreadful constipation necessitating an outreach nurse to visit weekly and administer enemas. Over the years, he has been given every laxative available, had anal stretches, torn his back passage and generally had a life of torment, so severe was the constipation. Watching them suffer in this way has been heart...

The story of Luke

He was eventually referred to what was then called the Autistic Research Team and underwent another onslaught of assessments and observations. There was much discussion with the school and me and eventually, after having been passed from pillar to post for what seemed to me like an eternity, he was diagnosed by a paediatric neurologist as having Asperger Syndrome. I was relieved. I had always known that Luke was different from the minute he was born and now I knew why. I thought at that time that the search was finally over. Little did I know that this was only the beginning of another journey

Meet theJdkfoons

Have adolescents, pre-adolescents and many shades of the autistic spectrum all under one roof, then life can certainly be .colourful I have seven children, all very special, all very much loved and all very different - seven different colours of the rainbow. There are four boys and three girls the boys all being various colours of the autistic spectrum. In our house we have dyslexia, dyspraxia, Asperger Syndrome (AS), Attention Deficit, Hyperactivity Disorder (AD HD), Sensory Integration Dysfunction (SID) and autism to add that extra 'oomph' to an already manic family. Next, meet Luke (if you have not already done so). Luke is fourteen years old and has Asperger Syndrome and dyspraxia. He has written two books now and is well on the way to finishing his third. His second book, Freaks, Geeks and Asperger Syndrome, tells of Luke's perspective on life, Asperger Syndrome and the difficulties of adolescence. Luke's main passion is computers. Over his life Luke has had 'obsessions' that...

Dyspraxia

Over the years, dyspraxia has been given several names. Clumsy child syndrome, developmental coordination disorder, minimal cerebral dysfunction .call it what you will, dyspraxia is a very real problem to many people, children and adults alike. Dyspraxia or developmental coordination disorder is likely to affect many people with autism. It is debatable as to whether dyspraxia is an autistic spectrum disorder in itself or whether it is a co-morbid condition that accompanies another

Dyslexia

Many children on the autistic spectrum also have dyslexia. Dyslexia comes from the Greek meaning 'difficulty with words' and is a difference in the brain area that deals with language. Again, like dyspraxia, there is no 'only' about dyslexia - it pervades many areas of life. Interestingly, dyslexia and dyspraxia often go hand in hand and many difficulties that are present in one are also present in the other. As with a dyspraxia child, a dyslexic child may be clumsy, often tripping, have problems with tying shoe laces and ties. Overlaps are evident in so many of these 'disorders' that it really is impossible to fit each child neatly into little boxes and although that is exactly how it should be, no two people being the same, this causes problems for professionals, parents and children alike. One thing we all need to learn is that although a label is needed as a signpost in order to gain help for our unique children, they often have threads of many different parts of the colourful...

Recommended Reading

Cumine,V., Leach, J. and Stevenson, G. (1998) Asperger Syndrome A Practical Guide for Teachers. London David Fulton Publishers. Cumine,V., Leach, J. and Stevenson, G. (2000) Autism in the Early Years A Practical Guide. London David Fulton Publishers. Dowty, T. and Cowlishaw, K. (2001) Home Educating Our Autistic Spectrum Children Paths are Made by Walking. London Jessica Kingsley Publishers. Jackson, L. (2001) A User Guide to the GF CF diet for Autism, Asperger Syndrome and AD HD. London Jessica Kingsley Publishers. Jackson, L. (2002) Freaks, Geeks and Asperger Syndrome A User Guide to Adolescence. London Jessica Kingsley Publishers. Le Breton, M. (2001) Diet Intervention and Autism Implementing the Gluten Free and Casein Free Diet for Autistic Children and Adults A Practical Guide for Parents. London Jessica Kingsley Publishers.

A few more colours

As I have illustrated, Joe seems to fit the criteria for many other 'conditions' though I prefer to think of Joe as having an autistic spectrum 'difference' with a predominant label of AD HD - Joe is simply (well maybe it's not so simple ) Joe. I have written briefly how added extras such as dyspraxia, dyslexia and sensory issues affect us as a household, just as I have written about autism, AD HD and Asperger Syndrome in later chapters. Other colours of the autistic spectrum and labels which our children often acquire, either separately or along with autism, are listed below

School

Whilst the above scenario seems amusing, can you imagine the trouble a child would get into if the conversation were carried out with a teacher rather than a parent Undoubtedly there are some teachers who may indeed understand an autistic child's way of thinking, however I am certain that there are far more who don't and would be forgiven for thinking that a child was merely being cheeky. All parents with an autistic child at any place on the spectrum know far too well the difficulties that arise when trying to find appropriate education for our children. To be fair, most professionals working with children on the autistic spectrum know how hard these children are to place. The nature of autism is that the children have an uneven profile and so whilst a child may have limited communication they may not have learning difficulties at all or may indeed have problems in one area but be way above average in another. Autism is pervasive and school is one place that causes stress for the...

And now time to eat

Many of us have images, either from our past or from the television, of family dinners. All the children sit around a table, behaving impeccably, not an argument to be heard. Mother smiles sweetly as she serves delicious looking meals to her grateful children and all sit down to eat and exchange family news.in your dreams If any of you with autistic children or even with more than one child experience anything remotely resembling this then I really must hear of your secret Mealtimes are one area where autism really does equal mayhem. Most of us with children anywhere on the autistic spectrum are painfully aware of how potentially explosive any mealtime can be. Autistic children often self-restrict their foods, are extremely particular about the presentation of the food, dislike certain temperatures, colours, textures and smells, loathe their foods touching in fact mealtimes and autism really are a recipe for disaster The rigidity of an autistic child can turn a supposedly pleasurable...

Put Safety First

Whether on holiday or at home, for any parent or carer of children of any age, safety issues are of the utmost importance. Whether we worry about our teenagers engaging in risk-taking, the lack of forethought in our AD HD children, the lack of awareness in our autistic children or the clumsiness of our dyspraxic children, nothing is surer than the fact that as parents .we worry I feel that I would be neglecting my duty to other parents and children if I didn't write separately about safety issues, particularly for children with autism, AD HD, AS and dyspraxia. By illustrating the difficulties and dangers using examples of traumas that my own children have experienced, I may be able to play some part in raising awareness of safety issues surrounding children anywhere on the autistic spectrum.

Awaiting a diagnosis

How often have you heard Well they all do that or He looks fine to me Most parents of AS children already have a pretty good idea that something is different about their child so to be 'reassured' can be infuriating. Whilst many children do have their funny little ways and many children may indeed have characteristics of autism but not enough to impair them sufficiently to warrant a diagnosis, there are also numerous children who could benefit from support in school and understanding from family and friends, yet are not receiving such help because of a lack of diagnosis. Children with autism rather than AS can usually be spotted by professionals and diagnosed far earlier than those with AS. Because children with AS meet their milestones at the expected age, it is often only as they begin nursery or school that their difficulties become apparent to anyone other than their parents. If you are a parent reading this and your child has already been diagnosed with Asperger Syndrome, you...

Teacch

The TEACCH approach was first developed in North Carolina in 1966. On reading more about TEACCH, many parents realize that they inadvertently adopt the same kind of methods without realizing it. How many of us have set up a working area for our autistic child How many of us use schedules, pictures and social stories to enable our children to make sense of their environment The TEACCH approach aims to help children make sense of their environment thus ameliorating stress and fear rather than addressing autism directly. The structured teaching approach starts on the premise that autistic children access the world mainly in a visual way and also that structure and predictability is vital. The physical environment is structured both at home and at school and the child is told in visual form (pictures, words etc.) exactly what to expect next.

Social interaction

When Ben was younger and before the many interventions and therapies we embarked on in a bid to reach him, it was very obvious that he had difficulties in social situations .he just didn't interact at all. In his own world he laughed and flapped and flicked and lined things up and people were merely objects to be used to gain access to his needs or wants. Now autism is much harder to spot in Ben - in fact I am sure there are those who would dispute the diagnosis (or maybe I am fooling myself). Ben wants desperately to interact with people. He chats to everyone he meets, follows strangers around asking them the familiar questions (what is their name and what is their website called ) but yet his interaction is certainly not like other children. Lorna Wing (Wing and Gould 1979) noted that autistic children fell into certain categories 'aloof', 'passive' or 'active but odd'. Ben is most definitely the 'active but odd' autistic child. Ben now wants to interact with people but to do so he...

Different is cool

Whilst I have written deliberately about AS from my perspective and what it is like living with Luke, one thing he makes perfectly clear throughout his book is the fact that he doesn't see Asperger Syndrome as a disorder. His motto is 'different is cool' and although he says that when things get tough, he sometimes has to use that as his mantra and repeat it over and over to himself in a bid to convince himself of its accuracy, all in all he wouldn't change the way he is one iota not many of us could say that The various shades of autism touch Luke's world with splashes of colour, making him see many aspects of life in a way that enriches and lights up, not only his world, but that of those around him. In a chaotic, fast moving and multicoloured family, Luke still ambles on through life, unperturbed by the chaos and noise around him, still taking time to process life in his own unique way and stopping to see the beauty that often passes us by amidst the rush of life. Luke is convinced...

Theory of mind

Rita Jordan (1999) stated that 'it is not just that children with autism do not understand what others are thinking and feeling but that they do not understand that they are thinking and feeling' (cited by Cumine, Leach and Stevenson 2000) - they are not capable of putting themselves in someone else's shoes or even of realizing that other people are wearing shoes (This saying would cause my boys to don my shoes and prove me wrong.) This lack of'theory of mind' in autistic children seems to impact many areas of their lives - indeed it impacts many areas of their parents', carers' and teachers' lives too One ofthe ways it affects Luke

On the positive side

Furthermore, the presence of autism in the family has taught the girls to accept that things are not always as black and white as they first seem. If they see a child having a tantrum in a shop or if someone at Where oh where did those years go The memories of their baby and childhood years are as clear in my mind as if they were only yesterday yet no longer are the arguments about whether or not they have washed or changed their clothes, but whether or not they have 'borrowed' my clothes, make-up and toiletries. Even without any added extras the girls have their own difficulties to negotiate in their path to adulthood and life with 'typically developing' teenagers is just as hard, (sometimes more so) as life with teenagers on the autistic spectrum. In my household, as you have seen, I have a combination of rather unusual characters with very different personalities and so have to help Luke and Matthew as they negotiate their pathway to adulthood. Dyslexia is making it harder for...

Food for thought

Any kind of writing on family life would not be complete without mentioning mealtimes. In mine and maybe all other large families, mealtimes, and indeed anything relating to food, seem to be one area that causes even the most placid ofchildren to sharpen their claws and fight. Maybe in a large family it really is seen as survival of the fittest. Regardless of the size of the family however, the presence of autism, AD HD or any related difference can cause an explosion of colour that is blinding

Survival skills

Whilst I endeavour to impart any wisdom I have gained over the years to parents, carers and professionals reading this, I may even attempt to practise what I preach My wonderful online friends are all parents of children with autism or a related condition and try their best to encourage me to take time out for myselfand to learn to relax. That is not something I am good at doing. In fact I find it impossible. Personally I need to be doing a dozen jobs at once otherwise I get bored. Everyone is different so the secret is to find what works for you and embrace it. It is, however, imperative that each one of us finds our own survival techniques in order to ensure that not only are we happy and healthy parents, but we are also happy and healthy people in our own right. In my humble opinion, surviving and enjoying life as a parent is all about prioritizing. As parents of children with autism, AS, AD HD or any other special needs, our priorities need to be slightly different from those of...

Large families

If you are one of these people who, like me, automatically answers when someone shouts Mum regardless of where you are or who is with you, if you have to count your children when you are out, or you go through a few names before you hit on the right one then undoubtedly you have mayhem in your house too As parents ofmore than one child, the difficulties we face and the fun we have will differ from those with only one or maybe even two children, and the presence of any shade of adolescence, autism, AD HD and AS can sometimes be entertaining When reading snippets in magazines (OK so it is only when I am sitting in a doctors', or hospital waiting room ) or on the internet about large families, most say that what they cherish about having a large family is that the younger children learn from the older ones and they all become self-sufficient far earlier in life. It seems that unless my parenting skills are seriously defunct then autism has stamped its hobnail boots over this theory too...

Imagination

Joe's diagnosis is predominantly severe AD HD but underlying the blindingly obvious AD HD runs a subtle blend of different shades of autism, SID, dyspraxia and tics. Given the fact that autism plays a large part in making Joe the delightful little chap he is, one area that creates confusion is the misconception that autistic people are unable to tell lies. I have thought long and hard about why Joe is so literal, has such difficulties understanding facial expressions, body language and receptive language but yet has the imagination worthy of a commendation by Walt Disney Having lived with Joe and his 'lies' for so many years, I have come to the conclusion that this ability to tell the most amazingly far-fetched and believable stories, is yet another one ofthe triad ofimpairments in clever disguise. 'Impaired' is maybe the wrong word for the way Joe can expand on the truth, invent full scenarios from just one word or action and omit aspects of a story in order for it to have a...

Avoiding conflict

I am asked so many times if my girls help me with the little boys or the housework - in short.the answer is no I can ask one or other of them to put Ben to bed or try to calm Joe down and they do occasionally try, but teenagers are naturally self-absorbed. Each one of them has his or her own personality, worries and difficulties to attend to. Whether it is a spot on their nose, a fall out with a boyfriend or school pal, or just a hormonal mood, the girls and the boys seldom mix. In a large house and with so many sorts of autism and personalities, my job is that of a mediator, a negotiator, a referee .call it what you like but I am sure all of you parents of more than one child know all too well how hard it is to balance so many differing needs.

Routine and change

Most writings on autism state that autistic people do not like change and need routine. Whilst this may be true in most cases, there are always exceptions. In fact a friend ofmine has an undoubtedly autistic son who certainly doesn't seem to show any noticeable difference in his behaviour regardless of where he is taken, how his routine is disrupted or how his environment changes. However he is non verbal and most definitely has the triad of impairments. As I have stated so many times, autism presents as uniquely in each individual as their own particular fingerprint.

Setting boundaries

With so many teenagers at different stages on their pathway to adulthood and such a colourful mix of autism scattered around the house, it is particularly hard for me to set boundaries and stick to them. In a large family there is always the ever familiar cry of How come they can do that and I can't and it is particularly hard for the boys to understand that one set of rules doesn't apply to all. However, I do try to be consistent, and the only real problems we have in our home revolve around everyone doing their fair share (they don't ) ofchores. Though I can't say that I am always successful in setting boundaries for my technicoloured family, rebellion is not a major problem so here are some tips that work for us.

Eating disorders

In addition, more and more research is producing both qualitative and quantative evidence to indicate that there is a link between eating disorders and autism, and although the research is by no means conclusive, I for one am not taking any chances and do all I can to ensure my children's mental and physical well-being. Teenagers in particular need their self-confidence boosting frequently and I make sure, as much as I can (a virtually impossible task ), that the boys know that any personal comments about the girls' appearance should aim to be positive and the girls know that any comments made by the boys are not meant to be derogatory. I quietly watch for any warning signs and talk clearly and honestly about the dangers of taking exercise, dieting or anything else to excess. I also make sure they understand that 'different is cool' and the variety of shapes and sizes, colours and differences all serve to make the world a much richer and fuller place in which to live.

Count your blessings

Many parents take such incidences for granted. Indeed whilst all parents are joyful at their child's first smile, first step or first word, whilst most parents delight in each new antic their child performs, how much more do we parents of special needs children delight in their achievements Those of you with children with bowel problems will know the delight when they have a 'normal' bowel movement for the first time (strange how many times poo and autism are in the same sentence ), those of you with non verbal children will understand the euphoria when they make a sound or utter their first word, and those of you with children with AD HD will undoubtedly jump for joy

Treasured memories

Most families have special events and family gatherings which they can look back on and talk about, smile about and even cringe over in years to come. When children in the family have a special need, particularly one as unpredictable as autism, then there seem to be far more of these occasions to remember - all of them with hilarity (and maybe some embarrassment ). Whilst trips down memory lane for other children mainly consist of fond memories of days out with their parents, particular treats and fun times, my elder children regularly sit and reminisce over the boys' antics and laugh hysterically as they remember past events. The boys and their differences add a special depth to the family, give the girls a rare understanding of others and create a wealth of hilarious memories for us all to cherish forever. If you ask my children to recall Christmas, they will be quite matter of fact about the way Ben has to be introduced slowly to the idea. Whilst one room is full of sacks of...

An unseen guest

I have heard all too often that children with autism are not capable of lying. Joe's blurring of fact and fiction throws a slightly different angle on that idea, however all four of the boys are quite capable of lying about whether or not they have done something wrong. The difference between them and the girls is that the boys cannot work out how their lies will be received. Matthew often refuses to admit that he is the one who took the last bar ofchocolate, even when he has been

Sleeping sickness

Sleep problems seem to come in a variety of forms - problems getting to sleep, problems staying asleep - with so many shades of autism and such colourful children, I am lucky enough to have an exciting mixture of both My children are the world's worst sleepers and I have already written about the horrific incident that happened as a result of Luke trying to find a way to sleep. However what works for one child may not do for another and just because something hasn't worked at one time in a child's life, it does not mean that it never will. The secret is to try things periodically and find what works best for the family as a whole. Blackout curtains are a must for children on the autistic spectrum. Children on the autistic spectrum seem not to produce enough melatonin, the hormone produced in the pineal gland and the retina that regulates our bodies' capacity to recognize night and day. Therefore it needs to be dark before their bodies can shut down and sleep. Any annoying sounds in...

Life with Luke

After Luke was diagnosed, I felt relieved that at last I had a name for the collection of differences that made Luke so special but yet so unusual. However .although I knew what was different about Luke, although it had been given a name, I have to say that I still didn't quite take it on board. I read up on AS, I talked to the school about how best they could help him, I liaised with the autism team and tried hard not to overload Luke with sensory experiences and unpredictability. With others however, a stony silence hung in the air as Luke talked and behaved in his odd ways. How could there be anything wrong with Luke After all, he looked fine Surely he was merely a bit eccentric - a little odd .and so I bowed down to pressure and kept quiet, never mentioning the dreaded 'A' word in front of my husband and family. I had Anna, a delightful and placid little baby by then, and soon after, Joe was born. So Luke, I suspect, muddled his way through life as I tried to perform an amazing...

Sibling Situations

Any parent is well aware of the fact that as soon as that tiny bundle enters into your family, you automatically take on the role of nurse, teacher, counsellor, cleaner, chauffeur .the list is endless. Whilst I accept and even enjoy most of these roles (well maybe enjoy is not quite the right word, especially when it comes to the cleaning role ), one I would give up instantly is that of .referee Whilst I have just written about family fun, an aspect of family life that certainly is not fun is that in a household with more than one child, friction will undoubtedly occur - and when there is the added presence of any shade of the autistic spectrum then corners tend to be chipped off each family member in rather painful chunks I have already apologized earlier for the fact that this book is a hotchpotch of children, ages, abilities and 'disorders'. That's my family I am sure many of you reading this have your own combination of age, ability and difference and there is nothing surer than...

Sense of self

One area that is particularly problematic for Ben and I am sure many other autistic children, is his sense of self. For many years, I, Portage (the pre-school home education service) and anyone else working with Ben, spent a great deal of time and effort attempting to teach him that he was Ben. When I realized that Ben was not deaf, I very much wanted him to turn to his name or to know that he was the Ben that I was talking to and talking about. Every single day without any exception at all for at least thirty-six months I spent some time each day saying, Where is Ben - There he is and touching his chest. This actually proved more difficult than I first thought because if I pointed to Ben's chest and said There he is, he eventually learned to repeat my actions .fully believing that his chest and indeed everyone else's chest was this Ben that everyone was so keen to talk about I therefore tried with photographs of all the family, pointing out Ben. However he only noticed some tiny...

Safety suggestions

Whilst all these examples make chilling reading and show exactly what can happen to our children, the following general tips may help all those dealing with a child anywhere on the autistic spectrum and save you a few grey hairs Child proof your house. Don your autism, dyspraxia and AD HD glasses and take a fresh look around your house.

Medication

The Ritalin debate is as controversial in the field of AD HD as the MMR vaccination is in the field of autism. There are few subjects within AD HD more likely to create a heated debate than medication and whether or not we as parents should 'drug' our children. From reports of stunted growth, smaller brains, the likelihood of drug addiction in later life, even death, Ritalin and the use ofmedication for AD HD children has had some bad publicity. The vast majority of people who have AD HD use some form ofstimulant medication for their disorder and Ritalin has been in use for over forty years. However it is far more evident nowadays, due to both media attention and the increase in diagnoses of AD HD.

Dangers of dyspraxia

Many of you parents reading this will have dyspraxic children, even if dyspraxia is an 'added extra' amidst other shades of autism. You will know all too well how many cups of coffee have been knocked over by your child, how many plates have been smashed and how many bumps and bruises you have nursed over the years. I am no different. Parents or carers ofchildren with dyspraxia should be given automatic passes to the emergency room at the local hospital

Multicoloured Mayhem

Parenting the Many Shades of Adolescents and Children with Autism, Asperger Syndrome and AD HI) Freaks, Geeks and Asperger Syndrome A User Guide to Adolescence A User Guide to the GF CF Diet for Autism, Asperger Syndrome and AD HD Asperger Syndrome in Adolescence Reweaving the Autistic Tapestry Autism, Asperger Syndrome and ADHD Lisa Blakemore-Brown ISBN 1 85302 748 0 Diet Intervention and Autism for Autistic Children and Adults A Practical Guide for Parents Foreword by Rosemary Kessick, Allergy Induced Autism ISBN 1 85302 935 1 Parenting the many shades of adolescents and children with autism, Asperger Syndrome and AD HD Extract reproduced with permission from A Guide to Asperger Syndrome by Christopher Gillberg, Copyright 2002 Cambridge University Press. Multicoloured mayhem parenting the many shades of adolescents and children with autism, Asperger syndrome, and AD HD Jacqui Jackson.-- 1st American pbk. ed. p. cm. 1. Autistic children--Care. 2. Autistic children--Family...

Developmental Disorders

The behavioral symptoms of tots and preschoolers with Pervasive Developmental Disorders (PDD) include often extremely difficult and out-of-control behaviors such as severe tantrums, aggression, and self-injuring. This category includes the disorders of autism, Rett's Disorder, Childhood Disintegrative Disorder, and Asperger's Disorder. PDDs are characterized by severe and pervasive impairments in social interaction skills, communication skills, and or the presence of an abnormally repetitive behavior, interest, or activity. Autism appears to be strongly genetically predetermined since if a twin has autism there is almost a 90 chance that the identical twin, even when raised in a completely different home, will suffer from autism. The essential feature of autism is the presence before the age of three of an impaired development in social interaction and communication with a markedly restricted area of activity and interests. Autistic tots commonly do not look their parents in the eyes,...

Real Moms Resource Guide

Special Children, Challenged Parents The Struggles and Rewards of Raising a Child with a Disability, by Robert A. Naseef (Baltimore Brookes, 2001). Naseef, a psychologist in Philadelphia and the father of an autistic child, has written a guide to help the parents and siblings of children with disabilities learn what to expect and how to cope with the challenge, particularly its emotional aspects. Strong and personal.

ReaL moms secret

The Lesson a Real Mother Teaches Probably the one thing every woman wants most is a healthy child. We pray our kids will be blessed with good health, but we also desperately hope life will bring them happiness. Unfortunately, all too many children aren't dealt easy life sentences. The array of difficulties might include autism spectrum disorders, learning disabilities, chronic illness, depression, or hearing impairments. But whatever the issue, real mothers know that some things can be changed and some can't. And real moms realize that accepting what can't be changed is a big secret to helping their children cope with their challenges and get on with their lives. And so

Medicine Maneuvers

Autism breakthroughs The latest autism prevalence rates were published at the end of last year, and the numbers were shocking. One in every 110 kids and 1 in every 70 boys in the U.S. is living with an autism spectrum disorder (ASD), the report showed. That's up from 1 in 150 and 1 in 94 boys only two years ago. But there is plenty of hopeful news, too We're getting closer to understanding the possible causes. Groundbreaking research last year pinpointed what scientists are calling autism susceptibility genes, which regulate how the brain develops and how connections between cells are made. But you can have those genes and not develop the disorder, says Geraldine Dawson, Ph.D., the chief science officer at the advocacy organization Autism Speaks. The genes could be influenced, she says, by prenatal and environmental factors such as infections, medications, birth complications, and exposure to certain toxins, The hope is that, someday, we can identify children with genetic...

Order Obsessed

When her son was 3, Amy Spencer of Wintock, WA, found herself stuck in a traffic jam almost daily on her living room floor. Luke lined up his cars there, and he got very upset if you disrupted the order, she says. The behavior's not unusual, in fact, you may have noticed that your own child has developed a new passion for organizing anything he can get his hands on, from shoes to stuffed animals. Worry-prone parents might immediately fret about autism, but if your child shows no other symptoms, there's probably no need to be concerned, says Judith Myers-Walls, Ph.D., associate professor Of child development and family studies at Purdue University. He's simply trying to make some sense out of a world that, from his perspective, can seem pretty darn overwhelming at times.

Funny Wiring Autism

Funny Wiring Autism

Autism is a developmental disorder that manifests itself in early childhood and affects the functioning of the brain, primarily in the areas of social interaction and communication. Children with autism look like other children but do not play or behave like other children. They must struggle daily to cope and connect with the world around them.

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