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- Herausgeber: John Wiley & Sons
- Kategorie: Fachliteratur
- Sprache: Englisch
Understand the healthcare needs of autistic patients with this essential volume
Autism is a condition that directly affects as many as 2 million people in the United Kingdom, a figure which does not include family members and other loved ones. As most nurses, healthcare assistants, and other healthcare professionals will engage with autistic patients or service users at numerous points in their careers, the Health and Care Act 2022 requires healthcare professionals to be given autism training appropriate to their role. There is an urgent need for a publication which directly addresses this new training requirement and fulfills the learning needs of workers across the healthcare sector and beyond.
Autism in Nursing and Healthcare offers a solid grounding in the issues relevant to the care and support of autistic people. Viewing autism as a lifelong condition, this book offers chapters covering the full lifespan of the autistic person, with information on the role of nurses in both community and hospital settings. Appropriate for both formal and informal carers, it’s an indispensable resource for anyone with direct or indirect experience of autism.
- Chapters on welfare benefits, sexuality, and discrimination against autistic people
- Detailed discussion of the 2009 Autism Act and related strategies
- Practical intervention strategies throughout
Autism in Nursing and Healthcare is ideal for pre-registration nursing students from all four nursing branches, those in post-registration professional development sessions, Nursing Associates and Healthcare Assistants, as well as those who work with autistic people (either as patients or colleagues) looking to better understand autism.
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Table of Contents
Cover
Table of Contents
Title Page
Copyright Page
Preface
Acknowledgements
CHAPTER 1: Introduction
PURPOSE
AIMS AND OBJECTIVES
CHAPTER OVERVIEW
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 2: What Is Autism?
INTRODUCTION
WHAT AUTISM IS NOT
WHAT IS AUTISM?
AUTISM MYTHS
AUTISTIC PREVALENCE
MIND YOUR LANGUAGE
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 3: A History of Autism
INTRODUCTION
PRE‐HISTORY
HISTORY
POST‐HISTORY
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 4: Autism in Girls and Women
INTRODUCTION
PREVALENCE
WHY THE DIFFERENCE?
EXPERIENCES OF GIRLS
EXPERIENCES OF WOMEN
HOW YOU CAN HELP
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 5: Diagnostic Issues
INTRODUCTION
CURRENT DIAGNOSTIC CRITERIA
DIAGNOSTIC PATHWAYS
DIAGNOSTIC TOOLS
HOW YOU CAN HELP
AUTISM DIAGNOSIS AND ME
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 6: Autism and Communication
INTRODUCTION
WHAT IS COMMUNICATION?
HOW DO AUTISTIC PEOPLE COMMUNICATE?
COMMUNICATION ASSESSMENT TOOLS
HOW YOU CAN HELP AUTISTIC PEOPLE COMMUNICATE
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 7: Autism and Sensory Issues
INTRODUCTION
WHAT ARE SENSORY STIMULI?
SENSORY IMPACT IN THOSE WITH AN ASC
IMPACT ON NURSING INTERVENTIONS
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
CHAPTER 8: Autistic Children (0–11)
INTRODUCTION
DIAGNOSIS
PRESCHOOL
PRIMARY SCHOOL
TRANSITIONS
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 9: Autistic Adolescents (11–20)
INTRODUCTION
WHAT IS ADOLESCENCE?
AUTISM AND SECONDARY EDUCATION
ADOLESCENTS AND HEALTH
AUTISM AND HEALTHY LIFESTYLES
TRANSITIONS
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 10: Autistic Adults
INTRODUCTION
AUTISTIC ADULTS: 20–50
AUTISTIC ADULTS: 50–70
AUTISTIC ADULTS: 70+
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 11: Mental Health Issues and Autism
INTRODUCTION
WHAT IS MENTAL HEALTH?
MENTAL HEALTH AND AUTISM
HELPFUL INTERVENTIONS
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 12: Physical Health Issues and Autism
INTRODUCTION
AUTISM AND PHYSICAL HEALTH
GP PRACTICES AND COMMUNITY HEALTH CENTRES
DENTISTS
A&E DEPARTMENTS
OUTPATIENT DEPARTMENTS
ON THE WARDS
CONCLUSIONS
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 13: Person‐Centred Planning, Interventions and Care
INTRODUCTION
WHAT IS PERSON‐CENTRED PLANNING AND CARE?
TWELVE ACTIVITIES OF DAILY LIVING
CONCLUSION
KEY POINTS
QUESTIONS AND REFLECTIONS
REFERENCES
CHAPTER 14: Reasonable Adjustments
INTRODUCTION
WHAT ARE ‘REASONABLE ADJUSTMENTS’?
REASONABLE ADJUSTMENTS AND THE AUTISTIC PATIENT
PRACTICAL EXAMPLES OF REASONABLE ADJUSTMENTS
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
CHAPTER 15: Nursing Interventions for Independent Adults
INTRODUCTION
WHAT DO WE MEAN BY INDEPENDENT?
THE INDEPENDENT AUTISTIC PERSON IN A HOSPITAL ENVIRONMENT
THE INDEPENDENT AUTISTIC PERSON IN A COMMUNITY ENVIRONMENT
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
CHAPTER 16: Nursing Interventions for Informal Carers
INTRODUCTION
WHAT IS AN INFORMAL CARER?
INFORMAL CARER STATISTICS
INFORMAL CARING AND THE AUTISTIC CHILD
INFORMAL CARING AND THE AUTISTIC ADULT
THE AUTISTIC PERSON AS INFORMAL CARER
INFORMAL CARING: THE ROLE OF THE NURSE
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
RESOURCES
CHAPTER 17: Autism, Spirituality and Sexuality
INTRODUCTION
SPIRITUALITY
SEXUALITY
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
CHAPTER 18: The Autistic Colleague
INTRODUCTION
PREVALENCE OF AUTISTIC COLLEAGUES
LIVED EXPERIENCES OF AUTISTIC COLLEAGUES
REASONABLE ADJUSTMENTS
SUPPORTING AUTISTIC COLLEAGUES
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
CHAPTER 19: Autism and Welfare Benefits
INTRODUCTION
DEBATES AROUND WELFARE BENEFITS
DISABILITY LIVING ALLOWANCE
PERSONAL INDEPENDENCE PAYMENT
JOB SEEKERS ALLOWANCE
CARERS ALLOWANCE
ATTENDANCE ALLOWANCE
EMPLOYMENT AND SUPPORT ALLOWANCE
UNIVERSAL CREDIT
NOTES ON THE ROLE OF THE NURSE
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
CHAPTER 20: Autism Discrimination
INTRODUCTION
WHAT IS DISCRIMINATION?
DISCRIMINATION IN LAW
DISABILITY DISCRIMINATION
DISCRIMINATION IN EDUCATION
DISCRIMINATION IN HEALTH CARE
DISCRIMINATION IN THE WORKPLACE
ROLE OF THE NURSE
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
CHAPTER 21: The Autism Act 2009 and Autism Strategies
INTRODUCTION
AUTISM ACT (2009)
AUTISM STRATEGY (2010)
AUTISM STRATEGY 2023
IMPLICATIONS FOR HEALTHCARE PRACTICE
AUTISM (EARLY IDENTIFICATION) BILL (2024)
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
CHAPTER 22: Decision‐Making and Consent
INTRODUCTION
WHAT IS CONSENT?
THE MENTAL CAPACITY ACT (2005)
AUTISM, MENTAL CAPACITY AND CONSENT
THE ROLE OF THE NURSE
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
CHAPTER 23: Autism: An Anarchy Too Far?
INTRODUCTION
WHAT IS MEANT BY ANARCHY?
AUTISM AS ANARCHY?
USING LANGUAGE
LOOKING BACK
LOOKING FORWARD
CALL TO ACTION
CONCLUSION
KEY POINTS
REFLECTIVE QUESTIONS
REFERENCES
Glossary
RESOURCES
Index
End User License Agreement
Guide
Cover Page
Table of Contents
Title Page
Copyright Page
Preface
Acknowledgements
Begin Reading
Glossary
Index
Wiley End User License Agreement
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Autism in Nursing and Healthcare
Christopher Barber
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Preface
When I trained and qualified as a registered nurse for those with a learning disability during the latter half of the 1980s, autism was virtually unknown and unheard of both in society in general and in nursing. I certainly do not recall any sessions or lectures on autism during my pre‐registration training. It would have come as a complete shock to me that I could be autistic myself. Even when I did a master’s degree in autism in the late 1990s, the ‘penny did not drop’. Yet, as a result of a book review that I did in 2004, I embarked on a journey which took me through an autism diagnosis in November 2008 to uncharted lands. This journey has led to a greater understanding and confidence in my own identity as an autistic person; my first book on autism was published in September 2011 and two books on learning disability in 2015 and 2023; in 2012, I was elected as a National Autistic Society council member, and at the end of 2023, I was appointed as the Deputy Chair of Birmingham Autism and ADHD Partnership Board. This journey is by no means complete and I am still travelling on this often rather rocky road that is autism. Indeed, my PhD studies focus on autism and ADHD within a theological environment.
Why the need for this current book? Well, good question! There are numerous books on autism currently on the market, some better than others it must be admitted and general knowledge about autism has improved drastically over the past 14 years or so. However, as a nurse, how much do you really know about autism and autistic people? Do you feel confident in meeting the nursing, health and social care needs of autistic people? Does any lack of knowledge and understanding about autism negatively impact upon how you relate to and work with autistic people? This current book has been written with a view to updating and expanding the contents of my original book published in 2011 and thereby making autism a little more understandable to those who perhaps feel that they need to have a greater understanding of autism and autistic people in order to provide quality person‐centred health and social care with confidence.
I was once asked by a nursing colleague during a ‘comfort break’ at an RCN Congress what ‘this disease called autism’ was. I hope that this current book explores and answers this question, and that you find this book useful in your daily work and relationships with autistic people, whether they are patients/service users, family members, friends, colleagues or even yourself. Happy reading!
Acknowledgements
There are many people I would like to thank, and without whose help and support this book probably would not have been written.
First, I thank my son Freddie for his support, love and encouragement over the past year and a half or so. You have been amazing. I also thank Tom Marriott at Wiley for believing that my proposed book had value and for offering me a book contract. Again, I thank the staff at Wiley, particularly Gothai Bhakthavachalam and Christabel Daniel Raj for their support and keeping me on schedule. Finally, I give a really big thank you to Helen McDermott and Sarah Percival‐Clarke, my design team, for coming up with ideas for the front cover design of this book.
I dedicate this book to my late wife, Jean, who died in 2021. Missing you every day. May you rest in peace.
CHAPTER 1Introduction
I'm a learning disability nurse by background, having been a registered nurse now for over a third of a century. I'm also autistic, out and proud, having been diagnosed in November 2008 at the age of 49. Yes, I know, that makes me kind of old!
As a result of a very brief conversation I had with a fellow nurse during a Royal College of Nursing Congress, I approached a number of publishers during 2009–2010 with a view to writing a ‘textbook’ on autism that would be aimed at nurses who did not work with autistic patients or service users a great deal but whom I felt needed to know more about autism than they currently did. One of those publishers, Quay Books (a subdivision of Mark Allen Publishing) very kindly or perhaps foolishly depending upon your viewpoint agreed to publish my book and gave me a book contract, for which I will be eternally grateful. I resisted the temptation to entitle the work ‘Autism: everything that you wanted to know but were afraid to ask’ (who says that autistic people do not have a sense of humour) and instead called it ‘Autism and Asperger’s conditions: A practical guide for nurses’ [1]. Catchy, I know!
Much of the following decade was spent being my wife’s full‐time informal carer, writing, being an RCN activist, being active in my local Catholic parish, being a school and NHS Trust governor, and working as a guest or visiting university lecturer in learning disability nursing, specialising in spirituality, autism, informal caring and politics, policy and nursing. My wife died in January 2021 after a lifetime of chronic health and disability issues (this book is dedicated to her memory), and I commenced a part‐time PhD in January 2022 focusing on inclusion, belonging and exclusion as experienced by the Church of England and Catholic clergy who are autistic.
Quite a bit has happened in the autistic world since my book on autism was published in September 2011:
Winterbourne View in November 2011
The passing of the
Care Act
2014
Whorlton Hall in May 2019
The deaths of Connor Sparrowhawk and Oliver McGowan
A number of autism strategies which followed on from the 2009 Autism Act, the most recent being published in 2021 and is set for revision in 2026
Growing understanding and acceptance of autism by both care professionals and the general public
A recognition of the need for and the mandatory duty on the part of all care professionals to receive training and ongoing professional development regarding autism and learning disability following the death of Oliver McGowan
My increased confidence in my autistic identity and need to be an effective advocate and ‘ambassador’ for autism and other autistics.
The time is now right for a new book on autism for healthcare professionals.
PURPOSE
What, then, is the purpose of this book? Is there not already enough written material about autism? Why the need for more? Agreed, there are whole libraries of books, journal articles and internet‐based information on autism with more being added almost weekly. However, as healthcare professionals, we do not appear to be as informed and aware as perhaps we should be about autism. I am not saying that as healthcare professionals, we know very little about autism, as such knowledge and understanding have improved significantly since my first book on autism was published in 2011.
In my Master of Education (M.Ed.) dissertation, a shortened version of which can be found in Barber [2], I stated that autistic people are as likely to experience the whole range of physical and mental health conditions as anyone else and would therefore require the same high‐quality nursing and health care as anyone else. A later article [3] reinforces this idea that autistic people will experience the same medical and health issues as everyone else. Just because I am autistic does not mean that I will not experience heart conditions, respiratory conditions, depression, diabetes, anxiety, renal problems or musculoskeletal issues. In my M.Ed., I investigated the need for an accredited course in autism spectrum conditions (ASCs) specifically for nurses, and I made the point that registered nurses were generally poorly served by existing opportunities for in‐depth training in the field. In this 2001 study, many parents expressed the belief that nursing interventions aimed at either themselves or their autistic children would have been better if the nurse had had some knowledge and understanding of autism issues. This finding was supported by many autistic people who were questioned as part of my Master’s dissertation and the 2018 article. Those who were autistic suggested a need for specific courses for all nurses who come into contact with this group of people.
Whilst this need has been met, at least in part, through the Oliver McGowan training courses, which are mandatory for all care professionals, regardless of roles, there is still a need for a simple book that could supplement existing training courses and act as a ‘go to’ resource for busy health care professionals. It is hoped that an increase in knowledge regarding autism will lead to better care and support for autistic patients and service users. It is hoped that the days when autistic people and their families have to fight for appropriate information and services, and for basic respect and dignity are consigned to the past and that this little book will have played a small part in that.
Who, then, should read this book and is this book right for you? The short answer to the first question is anyone and everyone who has face‐to‐face contact with autistic patients, carers and colleagues. And the answer to the second question is yes as this book will provide the information required to provide good quality care and support to autistic people. This will include you if you are, for example, a
Registered nurse
Registered nursing associate
Health care assistant (HCA)
Student nurse
Physiotherapist
Occupational therapist.
AIMS AND OBJECTIVES
As has already been noted, the intended aim of this book is to improve health care professional’s interactions with those who are autistic through improved awareness, knowledge and understanding of:
What autism is and is not
Diagnostic issues
The history of autism
Physical and mental health issues and autistic people throughout the lifespan
Nursing interventions for autistic people throughout their lifespan and within a range of healthcare settings
Support for informal carers
Laws and government strategies that specifically apply to autistic people
Autistic people as colleagues
Autism and discrimination within healthcare settings.
To achieve these aims, the reader will be able to:
Define autism and autism prevalence and discuss the various definitions available
Discuss issues around gender, communication, sensory processing and autism
Assess the value and appropriateness of the various diagnostic tools available
Place autism within a historical context
Discuss the impact and effects of autism throughout the lifespan
Understand and discuss the effects of autism on the wider family
Apply the above understanding in a range of professional work environments.
Whilst the above aims and objectives are not exclusive, the intention is for the reader’s awareness and understanding of autism to be challenged and changed. It is intended that this will lead to an improved way of working with autistic people either as patients/service users or as colleagues.
CHAPTER OVERVIEW
The book can be split into several sections:
Chapters 1–
7
set the scene and give a broad overview of what autism is and is not and a focus on five autistic issues, autistic history, autism diagnosis, gender differences, sensory processing and communication
Chapters 8
–
10
present autism as a life‐long condition (including autism in old age)
Chapters 11
–
15
explore autism within the frameworks of physical and mental health and nursing interventions
Chapters 16
–
20
will explore a number of issues related to the lived experiences of autistic people, including that of spirituality, autistic colleagues, informal carers of autistic people, welfare benefits and disability discrimination
Chapters 21
and
22
will explore two specific pieces of legislation in relation to the lives of autistic people
Chapter 23
will summarise key points and issues and look to the future.
Therefore, it can be seen that each chapter will contribute to seeing autism and autistic people ‘within the round’, as a ‘wholistic’ way of being and in a way that other books may not. As a way of providing a more detailed overview of the book, the following may be useful.
Introduction:
Sets the scene.
What is autism?
It investigates what autism actually is and is not, the prevalence of autism in the UK, and will dispel some of the myths associated with autism.
A history of autism
considers the history of autism within social, medical and religious contexts. This history will also include how views regarding the causes of autism have changed over time.
Autism in girls and women
focuses on the different ways in which autism may be presented in the female as opposed to the male, reasons for the differences in prevalence, differing ways of assessing and diagnosing and differing forms of support that may be needed.
Diagnostic issues
focus on diagnostic criteria and issues in autism in both children and adults, along with a personal journey towards diagnosis.
Autism and communication
will explore issues around how autistic people communicate, communication assessment tools and the differing communication support needs regarding communication
Autism and sensory issues
focus on the various sensory processing differences experienced by autistic people, the potential reasons for such differences and how such differences will present themselves within autistic lives.
Autistic children
will focus on the lived experiences of autistic children up to when they leave primary school. This will cover diagnostic, physical, mental and sexual health, social and educational issues.
Autistic adolescents
will explore what life is like for autistic adolescents and will explore issues around sexual health, relationships and identity issues, mental health, physical health, education (both secondary and further education), the transition from childhood to adulthood and the transition from education to paid employment.
Autistic adults:
Aged 20–50
Aged 50–70
Aged 70+
Mental health issues and autism
will explore the connections between autism and mental health, the prevalence of mental health issues amongst the ‘autistic population’, the possible causes of mental ill‐health, how ill‐health will present itself and therapeutic interventions that may be of value to autistic people.
Physical health issues and autism:
Most, if not all, autistic people will experience the same physical health issues as everyone else such as diabetes, pregnancy, cancers, strokes, cardiac or renal problems [
2
,
3
]. This chapter will focus on how to support the autistic patient within a GP practice, community health centre, dentist, A&E department, outpatient department or on the ward as a day or in‐patient.
Person‐centred planning, interventions and care
will build upon the ideas contained within
chapters 11
(mental health) and
12
(physical health) within the framework of person‐centred planning and care. What does person‐centred planning and interventions look, sound and feel like to the autistic patient or service user?
Reasonable adjustments
will explore the legal basis for reasonable adjustments, what reasonable adjustments look and feel like to the autistic patient or service user and practical examples of reasonable adjustments that could be implemented within a range of healthcare settings.
Nursing interventions for independent adults:
Not all autistic people will experience intensive support needs although some will. However, most autistic people will experience some support needs (the same as everyone else: no one is fully independent, no matter who they are and there is a difference between being independent and being interdependent) at some point in their lives. This chapter will explore the support needs of independent adults, how those needs can be met and the potential consequences if they are not met.
Nursing interventions for informal carers
will focus on the largely neglected area of the nursing, health and social care needs of informal carers of the autistic person, be the carers parents, siblings, partners, children or friends or indeed other autistic people. It is arguably and sadly often forgotten that informal carers will also have needs, needs that often go unmet with sometimes tragic consequences for the family and wider society. The role of the nurse and other healthcare professionals in meeting these needs will be highlighted.
Autism, spirituality and sexuality
will explore the often taboo issues of spiritual and sexual identity along with their care and support in relation to the autistic person.
The autistic colleague
will explore the lived experiences of inclusion and exclusion of nurses, nursing students, occupational therapists (OTs), Physios, health care assistants (HCAs) and nursing associates (NAs) who are themselves autistic and will provide suggestions regarding reasonable adjustments appropriate for autistic colleagues in the workplace. This chapter will include a debate around the disclosing of one’s autism diagnosis or identity to colleagues and managers and the workplace support that may be available.
Autism and welfare benefits:
Although not, strictly speaking, a health care issue, welfare benefits are a minefield and many nurses, HCAs, NAs and OTs will be asked to support the autistic person and/or their families to navigate their way through this minefield. This chapter will focus on a range of welfare benefits that are available to the autistic person and/or their families.
Autism discrimination:
Given that disability discrimination and disability hate crimes are far from being absent within the UK, this chapter will explore the meaning and lived experiences of autism discrimination, its causes, its impact upon the lives of autistic people and its implications for health and social care.
The Autism Act 2009 and autism strategies
will discuss the Autism Act 2009 and associated strategies in terms of what they say and do not say and its implications for health care service provision and autistic people.
Decision‐making and consent
will focus on informed consent and its meanings and implications for autistic patients and service users within the framework of the Mental Capacity Act (2005) and will present policies and guidelines as to best practices in decision‐making and the gaining of informed consent.
Autism: an anarchy too far?
This concluding chapter will summarise the key issues and points from the preceding chapters and explore what the future for autistic people may look and feel like and its implications for nursing and social care professionals.
Glossary of terms and index.
Each chapter will be written in a ‘jargon‐free’ manner and will include:
Work‐based care studies
Pause for thought/reflections
Calls for action (where appropriate)
End of chapter quiz
CONCLUSION
The time is right for a new and inclusive book on autism for all those who work in health care in the UK because the world of autism has changed since my first book was published in 2011 and because, to be honest, I had omitted a number of issues in this first book such as exploring issues around autistic colleagues. So, welcome to this book and I hope that you find it helpful in your everyday working lives. The next chapter will explore what autism means and the prevalence of autism within the UK.
KEY POINTS
Autistic people are as likely to experience the whole range of physical and mental health conditions as anyone else and would therefore require the same high‐quality nursing and healthcare as anyone else
The intended aim of this book is to improve health care professional’s interactions with those who are autistic through improved awareness
Each chapter will contribute to seeing autism and autistic people ‘within the round’, as a ‘wholistic’ way of being
Person‐centred planning and care will be used as the basis of providing care and support to autistic people.
QUESTIONS AND REFLECTIONS
Write a short sentence or two on what you hope to get from reading this book.
Keep a reflective diary and write down your thoughts as you read this book.
As you read this book, reflect on whether and how your knowledge, beliefs and attitudes regarding autism and autistic people have changed.
When you have finished reading this book, ask yourself whether what you wrote in response to the first question above has been met. If not, why not? What would you have liked included, taken out or written differently?
It would be very useful to me to receive your comments and feedback, so I would be very grateful if you could email your thoughts to the publisher, who would then pass them on to me. Thanks, and happy reading.
REFERENCES
1. Barber, C. (2011).
Autism and Asperger’s Conditions: A Practical Guide for Nurses
. London: Quay Books.
2. Barber, C. (2001). The training needs of registered nurses engaged in work with people with an autistic spectrum disorder.
Good Autism Practice
2 (2): 86–96.
3. Barber, C. (2018). Working with a patient with an autism spectrum condition.
British Journal of Nursing
27 (21):1232.
https://doi.org/10.12968/bjon.2018.27.21.1232
.
CHAPTER 2What Is Autism?
INTRODUCTION
Pause for Thought 2.1
When you hear the words autism or autistic, what do you think they mean? What do the words ‘autism’ and ‘autistic’ mean to you? Make a note of your response to this question.
I'm autistic! Does that mean that I know and understand what autism is and means? I wonder! Again, is autism a disability? Opinions differ on this as much as in virtually all areas of autism.
Autism is quite a complex condition to try to ‘pin down’ with any certainty or any degree of consensus. Even autistic people will often disagree over the meaning of autism as a term and as a condition. This chapter will tease out the meaning of autism by first and perhaps paradoxically exploring what autism is not before exploring what autism is. Along the way, a number of myths surrounding autism will be explored and then debunked. The various forms of autistic prevalence in the UK will then be explored, and this chapter will conclude with a note on the use of language within autism.
WHAT AUTISM IS NOT
First of all, and possibly paradoxically, perhaps the best place to start this exploration of what autism is, the meaning of this word, this condition of ‘autism’ is in exploring what autism is not. Autism is not:
A disease
. I was once asked by a nursing colleague what this ‘disease called autism’ was. My answer to her was probably not particularly helpful but the question led to me writing my first book on autism in 2011.
Catching
. You cannot get or catch autism through being in contact with an autistic person.
A childhood condition
that magically improves or disappears once the person becomes an adult. Although it must be present in childhood, autism is a life‐long condition which will be explored in greater detail in
Chapter 10
(autism in adulthood).
Curable
. Whilst there have been many attempts to find a cure for autism with some people claiming that they can ‘cure’ autism, there are no cures for autism. Whether or not there
should
be, opinion is divided within both ‘neurotypical’ and ‘neurodivergent’ groups.
A form of infantile psychosis
. This idea that autism was a form of psychosis was promoted by Leo Kanner, one of the ‘founding fathers of autism’ in the 1940s.
A form of negative or social deviance
. Autism is just a different way of being, living and engaging within the world, a way that is no worse or better than any other way but is just different, a way that works well for some people.
A negative life sentence
. There is much that can be celebrated within autism whilst not ignoring the likelihood that many people may need support in certain areas of life such as communication, social engagement and dealing with sensory processing issues.
WHAT IS AUTISM?
Activity 2.1
It has been noticed where you work as an HCA that there has been an increase in patients who are autistic, and you have suggested that it may be worth doing a short five‐minute presentation on what autism is during a staff development session. How would you go about putting together such a presentation and what would you include in it?
What, then, is autism? The question of how to define autism is a complicated one as the understanding and therefore diagnosis of autism has changed over the years and will continue to change. Therefore, the term ‘autism is …’ should be approached and used with caution.
Many people in public life, most long since dead, are said to be autistic, including among many others [1]:
Bill Gates (the founder of Microsoft).
Sir Patrick Moore (the astronomer).
Lord Keith Joseph (the Conservative politician who was Secretary of State for education in the early 1980s under Prime Minister Margaret Thatcher).
Peter Sellers (the comedian).
Lewis Carroll (author of
Alice in Wonderland
).
William Butler Yeats (the poet).
Eamon de Valera (the Irish politician and first Teasach/Taoiseach [Irish prime minister])
Gary Numan (rock musician).
Autism used to be defined and viewed in terms of ‘impairments’ and ‘deficits’ (see Lorna Wing's ‘triad of impairments’ [2]), but this is now seen to be incorrect, simplistic, largely negative and misleading by many autistic and non‐autistic people alike. See also the discussion below on the use of language within autism.
The National Autistic Society [3] suggests that:
‘Autism is a lifelong developmental disability that affects how a person communicates with and relates to other people and how they experience the world around them’.
The National Autistic Society [3] explores this apparently simple definition of autism:
Communication issues
: Autistic people have difficulties with interpreting both verbal and non‐verbal language like gestures or tone of voice. Some autistic people are unable to speak or have limited speech, while other autistic people have very good language skills but struggle to understand sarcasm or tone of voice.
Social interaction
: Some autistic people often have difficulty ‘reading’ other people – recognising or understanding others' feelings and intentions – and expressing their own emotions. Others may feel other people’s emotions intensely. This can make it very hard to navigate the social world.
Repetitive behaviours
: With its unwritten rules, the world can seem a very unpredictable and confusing place to some autistic people. This is why many autistic people may prefer to have strict and rigid routines so that they know what is going to happen. For example, many autistic people may want to travel the same way to and from school or work, wear the same clothes or eat exactly the same food for breakfast, lunch or dinner. Changes to such routines can also be very distressing for autistic people and make them very anxious.
Sensory sensitivity
: Autistic people may experience over‐ or under‐sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain. For example, some autistic people may find certain background sounds, like music in a restaurant, which other people ignore or block out, unbearably loud or distracting. This can cause anxiety or even physical pain.
AUTISM MYTHS
There have been many myths and untruths associated with autism, with these myths stretching back many decades and some still persisting today. Some of these myths have been mentioned above, and others include:
Autism is a childhood condition
: This idea is still persisting within the first quarter of the 21st century. One has only to look at the images and material presented by the magazine ‘
Autism Eye
’, for example, to see this (
https://www.autismeye.com
). Yet, autism is for life and does not disappear when one becomes an adult at 18.
If someone cannot speak, it means they cannot understand
: For a long time, doctors thought that if someone could not speak, they could not possess the intelligence or cognitive ability needed to understand.
Autism in children is caused by bad parenting
: This used to be called the ‘refrigerator mother’ and was a theory coined by Leo Kanner in the 1940s and perpetuated in the 1960s by the well‐known misogynist Bruno Bettelheim (see Bettelheim's book ‘
The empty Fortress
’ for more on this). This is now absolutely discredited and is NOT the case.
Autism is caused by sin
: This idea, along with the ‘link’ between disability in general and sin, has existed for many decades and within many religious and faith communities and cultures. This is absolutely NOT the case and as an autistic person I believe myself to be loved by God. Leon Van Ommen explores this idea in great depth in his book
[4]
Autism is caused by the MMR vaccine
: This theory, which some parents believed in did the rounds in the 1990s. However, there is no evidence to support this idea and the person who originally made this claim, Dr. Andrew Wakefield, later retracted his claim.
Autistic people are ‘in their own world’
, disconnected from the realities around them.
Autism and learning disability are the same thing
: This is a variation on ‘all autistic people have a learning disability’. Whilst there will be a small number of autistic people who have an additional learning disability, this will run to only about 15% of autistic people.
All autistic people are the same
: No, we are not, and once you have met one autistic person, you have met one autistic person. This would be like saying that all non‐autistic people are the same.
Autism is more common than it was in the past
: Whilst autism used to be seen as very rare because it was only diagnosed in children who showed an exact list of challenges, changes in diagnostic criteria over the years along with increased diagnosis in older adults may have led to an increase in the numbers of those who are either diagnosed or identified as autistic. However, it is not that there are more autistic people, diagnosticians have just got better at identifying autism in both children and adults.
The above is not exclusive and only indicates the various forms of myths and misinformation that can often be associated with autism, and there may well be others that you have encountered. The issue here is to be aware that these myths have been around for many decades and are still being perpetuated.
AUTISTIC PREVALENCE
Pause for Thought 2.2
How many people do you think are autistic within the UK?
It is important to know how many autistic people there are for several reasons, including helping to provide support as well as showing the sheer number and diversity of autistic people. This is also called ‘autism prevalence’. It is an estimate of how many autistic people there are in the UK. It is not the same as the number of autistic people who have a diagnosis and many autistic people might not have been identified or even know yet themselves. Again, many autistic people will be ‘self‐diagnosed’ or ‘self‐identify’ as autistic without going through the diagnostic process or received an autistic diagnosis [3].
The first thing that must be said here is that no one knows for certain how many autistic people there are in the UK. Historically, it was thought that about 1% of the UK population were autistic [3]. That will give an ‘autism population’ of around 700,000 people based on current UK population figures of around 68 million people. However, three issues must be raised here:
Does this figure of 1% include all those who are either waiting for a formal autism diagnosis, those who do not have or intend to seek a formal diagnosis but who identify themselves as autistic and those who are autistic but do not know it?
This figure of 1% is the standard statistic that is cited by care professionals, the NAS and the few scholarly papers that investigate autism prevalence and other autism statistics. However, an American study of the prevalence of autism amongst eight‐year‐old children
[5]
puts the prevalence closer to 3%.
This figure of 1% does not take into account the numbers of people affected by autism. Those who are affected by autism and those who are autistic are not the same: the former could include parents, siblings, partners, children, friends and colleagues of autistic people.
Two issues that have not been touched on yet are the prevalence of autism in girls and women and the prevalence of mental health issues within the autistic population. The second of these two issues will be explored in a later chapter. Suffice to say here that whilst MIND [6] claims that 25% of the UK population will experience a mental health issue sometime this year, around 80% of autistic people will experience mental ill health. It has previously been thought that male autistics outnumber female autistics by around 7:1. Indeed, autism has sometimes been referred to as representing an extreme male brain, male way of thinking and male way of interacting with others. This has been based on a misunderstanding of autistic characteristics and traits and limited by outdated stereotypes and incorrect assumptions. However, according to NICE [7], the prevalence of autism in females is between 1:3 and 1:5 (female:male). This gender split is largely thought to be a result of females being better at masking their autism in order to ‘fit in’ with society's expectations of them [7].
MIND YOUR LANGUAGE
There is much debate as to how one should approach autism as a form of identity. This debate can be broken down into two separate camps:
People/person with autism
: This position is championed by those who see themselves or, perhaps more often, by their parents as a person first and autistic second. They are more than their autism, and autism does not define them. Autism is seen in negative terms and as an additional and often unwanted piece of external baggage.
Autistic people/person
: This position is championed by those who view their autism as being an integral, crucial and indispensable aspect of their identity. In other words, identity first.
This is not mere semantics, however, as both positions have their ‘loyal’ and often vocal supporters and opponents. The ‘person with autism’ position has often been promoted by those who accept the ‘medical model’ of disability, whereas the ‘autistic person’ position has often been promoted by those who champion the ‘social model’ of disability. For a thorough and in‐depth exploration of this debate, chapter 2 in Leon Van Ommen's book [4] may be very helpful here. Suffice to say here that most autistic people, myself included, will see them/ourselves in terms of identity first rather than person first. Therefore, I am an autistic person rather than a person with autism.
Again, the accepted way of viewing autism is ‘ASD’ (autism spectrum disorder). Two issues need to be raised here. The first is that autism is a ‘spectrum’ of conditions and that not every autistic person will experience and present with all the characteristics and traits that are often associated with autism or to the same extent: ‘once you have met one autistic person, you have met one autistic person’. We are all different and unique in our own ways. Although both me and my son are autistic and share many autistic characteristics, we are two very different people with our own and individual sets of issues. It would be a huge mistake to approach, engage with, communicate with and treat all autistic people as the same. After all, you would not accept the idea that all ‘neurotypical’ (non‐autistic) people are the same.
The second issue that needs to be raised here is the use of the word ‘disorder’, a word that is increasingly being kicked against by autistic people. Autism is a condition, not a disorder, and it is but a very small step from seeing autism as a ‘disorder’ to seeing me as an autistic person as ‘disordered’. To be disordered or to be an element of disorder within the normative world and society of order is seen as negative and harmful to this ordered society, this ordered world. To be seen as ‘disordered’ opens the door to discrimination and oppression and invites ‘treatment’ and ‘management’ programmes such as Applied Behaviour Analysis (ABA) (which is increasingly being viewed as a form of conversion therapy for autistic people). Therefore, many autistic people would see autism as a difference and not as a disorder: ‘autism spectrum difference’, and some autistic people are beginning to use the term ‘neuro‐spicy’ as a way of making the point that we add spice and flavour to an otherwise bland world.
CONCLUSION
Autism is a complex condition to pin down with any degree of precision, certainty and consensus with many people, autistic and non‐autistic alike, both agreeing and disagreeing on its meaning as both a word and a lived experience. The still pervasive existence of the myths and misconceptions associated with autism along with the still pervasive use of negative and often discriminatory language hinders rather than helps in understanding what autism is and is not. This, however, does not mean that a consensus in understanding what autism is cannot be achieved; neither does it absolve us from trying to reach such an understanding.
The next chapter will explore the often controversial history of autism. If one is unfamiliar with the history of autism, one is ‘condemned’ to repeat its mistakes.
KEY POINTS
Autism is quite a complex condition to try to ‘pin down’ with any certainty or any degree of consensus.
Autism is a lifelong developmental disability or condition that affects how a person communicates with and relates to other people and how they experience the world around them.
There have been many myths and untruths associated with autism, with these myths stretching back many decades and some still persisting today.
Around 1% of the UK population is autistic, which gives an ‘autistic population’ of around 700,000 people.
Most autistic people, myself included, will see them/ourselves in terms of identity first rather than person first.
QUESTIONS AND REFLECTIONS
Re‐read the NAS ‘definition’ of autism given above. What are the strengths and weaknesses of this definition?
In light of this chapter, has your own ‘definition’ of autism changed? If so, how and why?
What are the myths surrounding autism that you have encountered, and are they different from those given in this chapter?
How would you counter these myths?
Reflect on your own use of language in relation to autism. Does it lead to a positive or negative view of autism and autistic people?
REFERENCES
1. Fitzgerald, M. (2004).
Autism and Creativity
. Hove: Brunner‐Routledge.
2. Wing, L. (1996).
The
Autism Spectrum: A Guide for Parents and Professionals
. London: Constable.
3. National Autistic Society (2024). What is autism?
https://www.autism.org.uk/advice‐and‐guidance/what‐is‐autism
(accessed 23 November 2023).
4. Van Ommen, L. (2023).
Autism and Worship. Waco, TX:
Baylor University Press.
5. Centres for Disease Control and Prevention (2021). Prevalence and characteristics of autism spectrum disorder among children aged 8 years – autism and developmental disabilities monitoring network, 11 sites, United States, 2018.
https://www.cdc.gov/mmwr/volumes/70/ss/ss7011a1.htm#F1_down
(accessed 23 November 2023).
6. MIND (2024). Mental health facts and statistics.
https://www.mind.org.uk/information‐support/types‐of‐mental‐health‐problems/statistics‐and‐facts‐about‐mental‐health/how‐common‐are‐mental‐health‐problems/
(accessed 23 November 2023).
7. National Institute for Health and Care Excellence (2020). Autism in adults: how common is it?
https://cks.nice.org.uk/topics/autism‐in‐adults/background‐information/prevalence/
(accessed 23 November 2023).
CHAPTER 3A History of Autism
INTRODUCTION
Autism as a recognised condition has only been around for about a hundred or so years, and those who are unaware of or forget the history of autism are condemned to repeat its mistakes. This may sound a little harsh and even aggressive but there is more than a grain of truth contained within this assertion. The story and history of autism are full of significant advances in understanding and support of and advocacy by autistic people and similarly is littered with periods and occurrences of significant discrimination and oppression. This chapter will explore and present this history in three phases: ‘pre‐history’, ‘history’ and ‘post‐history’. It is interesting to note the term ‘history’ here: literally ‘his story’. Much of the autistic story is seen and presented from the male rather than the female perspective, and this gender imbalance needs to be addressed by autistic women writing their own autistic stories using their own autistic voices. Similarly, much of the story of autism has been presented from a neurotypical and usually professional and academic perspective, and this needs to be balanced by autistic people exploring, writing and presenting their own history. There will be elements of these within this chapter.
Pause for Thought 3.1
Given the increased interest in discovering one’s family history and timelines as evidenced through TV adverts for businesses such as ‘Ancestry’ (https://www.ancestry.co.uk/), for example, do you think that it is important to discover where you come from, your personal history and does this personal history shape the person that you are and how you see your future?
