Living with Autism - By Fiona Marshall - A Sheldon Press Book

Autism seems to be on the increase. According to some estimates, 1 in 110 children are affected, with varying degrees of severity. Caring for an autistic child can be a constant challenge, with daily stresses and frustrations. In this book Fiona Marshall provides a wealth of useful information and encouragement for parents and carers.

Topics covered include:

• The autistic spectrum (including Asperger's syndrome)
• Causes of autism
• Treatments
• Biochemical and other therapies
• Diet
• Making the best of everyday living
• Behaviour and discipline
• Stress, and your feelings
• Families and friends
• Where to get help

Autistic children have their own values and ways of being. Autism can't be 'cured', but this book shows parents and carers, and their families and friends, how to begin to overcome the difficulties they live with, and build a loving and close relationship based on acceptance and understanding.

Living with Autism 

Contents

Acknowledgements

Introduction

1. Understanding autism
2. The autistic spectrum
3. Causes of autism
4. Diagnosis
5. Treatments
6. Biochemical and other therapies
7. Social communication — helping your child
8. Everyday living
9. Behaviour and discipline
10. Stress and your feelings
11. Family and friends
12. Help

Conclusion

Further reading

Useful addresses

Index

Living with Autism

Introduction

Picture this: You're in a crowd, yet you avoid eye contact. If someone ventures to address a friendly remark, you may start or ignore the speaker. You do your best to remain enclosed within your own world, hoping desperately to reach the safety of your own home environment soon. Maybe you're feeling too hot and can't breathe comfortably. The tension around you is palpable. You protect your shell as best you can with a book, magazine, personal stereo, crossword puzzle. Are you autistic? No, you're using public transport — stuck on a train, bus or tube in the rush hour, trying to survive in a hopelessly overcrowded and uncomfortable environment.

Solipsistic, isolated individuals battling against the overpowering forces of the community; it's an autistic world. The difference is of course that most of us can switch our sociability on and off at will, but is there something in the structure of our society that helps explain our fascination with autism?

Autism, or autistic spectrum disorder (ASD), is a high-profile disorder that is threatening to assume epidemic proportions. Whether there is a real rise in autism or we are just better at recognizing it, autism seems to be here to stay, and demanding its fair share of benefits, education and support.

Until the 1960s, autism was viewed as a relatively rare disorder. Over the past few years, professionals' recognition of autism has soared. Equally, press coverage has boomed, not just of controversial issues, such as the possibility of a link between autism and vaccines, but serious, in-depth explorations of a disorder that can vary a great deal in its severity and effects.

Most people have heard of autism and have some idea of what it is — even if this is just a folk mythology of autism. People's ideas range widely, from grim reports of suicidal parents pushed too far by the stress of having an autistic child, to near-fairy tales of 'savants' who can draw brilliantly or are mathematics geniuses.

Compare autism, which affects an estimated 1 in 1000, with another, much more common, neurological disorder, epilepsy, which affects 1 in 200. Autism has caught the cultural imagination in a way that epilepsy, for all its prevalence, has not. Maybe the archetype of the individual or loner has deep resonances for our society.

It has been said that the central problem of those with autism is that they lack a sense of context, that they have experiences, but not the ability to place those experiences. How far are those with autism different from the rest of us in this? Is autism a metaphor for our own cultural twenty-first century uncertainty? Autism raises piquant questions about how far it is possible to enter or understand the world of others, questions that have increasing relevance in an ever more crowded world.

What is autism? Once condemned as a result of cold parenting, autism is now recognized as being a neurological disorder that affects the way a person communicates and relates to other people. Studies of abnormalities in several regions of the autistic brain suggest that the disorder results from a disruption in early foetal brain development. Recent studies also strongly suggest that some people have a genetic predisposition to autism, although for some children, environmental factors also may play a role in actually precipitating it.

What is known for certain is that autism is not a psychological disorder, as was at first believed by the German psychiatrist Leo Kanner at the Johns Hopkins Hospital, Baltimore. He was the first to publish a report on autism in 1943, 'Autistic Disturbances of Affective Contact', which placed 'Kanner's autism' in the medical textbooks for some years.

Asperger syndrome, so-called high-functioning autism, followed the next year (1944) when Hans Asperger published 'Autistic Psychopathy in Childhood'. His work did not become known in the UK until the late 1980s, after autism expert Loma Wing described the syndrome fully in a paper on Asperger syndrome in 1981 — the year after Hans Asperger's death.

Autism was documented well before this, however, surfacing in early myths and stories of changelings. Indeed, Dr Wing suggests that stories of fairies stealing human babies, leaving changelings behind, are early references to autism. (These stories have also been linked with the doppelganger phenomenon, perhaps another concept that hints at the 'otherness' at the heart of autism. These concern a twin who does not exist, a being who looks like the original person but lacks their essential essence. These provoke the kinds of disturbing feelings that play a part in the grief of some parents when their thus far normal child is diagnosed with this profound developmental disorder.)

Other stories would also seem to chart autism through the mists of history. One is the theory that Brother Juniper, a disciple of St Francis of Assisi, was autistic. He was literal in his obedience, showed stereotypical behaviour and may have suffered seizures. In the early 1800s, Victor the 'Wild Boy of Aveyron' was found living wild in the French woods. Like many children labelled autistic after him, he was mute, order-loving and resistant to social training.

Since then, several figures in history have been labelled retrospectively as possibly having been autistic. These include Einstein — a loner who repeated sentences obsessively until he was seven. He may have suffered from Asperger syndrome, asserts Professor Simon Baron-Cohen, of the Autism Research Centre at Cambridge University. He assessed Einstein and Sir Isaac Newton for classical autistic traits, such as obsessive interests, difficulty in social relationships and problems communicating.

True or not, this kind of analysis does reflect the culture of an almost romantic interest in autism, as some kind of other-worldly state of being that verges on the magical or mystical.

The problem with all this is that the mystique of autism can detract from the very real, down-to-earth sufferings and needs of families living with autism. Parents faced with the lifelong care of a disabled child may want answers as to what caused the disability, but what they will really need to know is how to get through those days that are often impossibly difficult with an intractable child, how to battle public lack of understanding and how to make funds stretch to meet the child's special needs or cover one partner who gives up work to look after their child. They have to live in the very real, nitty-gritty world of getting dressed, brushing teeth and planning the best possible education. All the usual challenges of parenthood can be heartbreakingly difficult for those with autistic children.

The aim of this book is to provide help for families beginning to pick a way through the confusion a diagnosis of autism can cause. It addresses the key issues and points the way to further resources to tackle problems more fully than is possible in these pages.

There is a great deal of material on autism — books, information from support groups, via the Internet and so on. Some of it is extremely useful, some mystifying, some downright unfortunate. Internet material in particular varies from terrific scientific reports to poundingly literal personal accounts, and from obscure, expensive offers of treatment, to long, circumlocutory accounts by people from 'the autism community' giving 'neurotypicals' an insider's account of what it is really like to have autism. This book aims to summarize some of the most current views on and theories about autism in as accessible a way as possible and, by focusing on autism in childhood, provide a starting point for those families embarking on the challenging voyage of discovery that is living with an autistic child.

On this journey, the words of Hans Asperger ('Autistic Psychopathy in Childhood', 1944) remain a source of inspiration and an ideal:

Exceptional human beings must be given exceptional educational treatment, treatment which takes into account their special difficulties. Further, we can show that despite abnormality, human beings can fulfil their social role within the community, especially if they find understanding, love and guidance.

About the author: Fiona Marshall has written widely on health, psychology and parenting. She is the author of eight books, six of them for Sheldon Press, and also a novel.