Ann Ozsivadjian is a clinical psychologist in independent practice and also a visiting senior lecturer at King’s College London. She worked for several years as the senior psychologist in a specialist complex neurodevelopmental disorders team at the Evelina London Children’s Hospital, providing assessments and treatments for a wide range of neurodevelopmental difficulties and co-occurring conditions. Her particular research interests and clinical specialism are mental health problems in autism and adapting interventions for young people on the autism spectrum, and she regularly presents at conferences on these topics. She also provides training courses across the UK to NHS and other services on the assessment and treatment of mental health problems in autism. She has published a number of papers and co-authored book chapters. She has also produced podcasts and webinars in conjunction with the Association of Child and Adolescent Mental Health.

Helping Your Child is a series for parents and caregivers to support children through developmental difficulties, both psychological and physical. Each guide uses clinically proven techniques.

Titles in the series include:

Helping Your Child with Fears and Worries

Helping Your Child with Friendship Problems and Bullying

Helping Your Child with a Physical Health Condition

Helping Your Child with Sleep Problems

Helping Your Child with Loss and Trauma

Copyright

Published by Robinson

ISBN: 978-1-47214-705-9

Copyright © Ann Ozsivadjian, 2023

The moral right of the author has been asserted.

‘Think’ on page 322 and ‘More Pros Than Cons’ on page 341 © Joseph McMahon

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of the publisher.

The publisher is not responsible for websites (or their content) that are not owned by the publisher.

Robinson

Little, Brown Book Group

Carmelite House

50 Victoria Embankment

London EC4Y 0DZ

www.littlebrown.co.uk

www.hachette.co.uk

To my wonderful parents; my lovely, kind and
brilliant Dad, who sadly passed away during the
writing of this book, much missed and never far from
our thoughts. And to my wonderful mum for all her
love and friendship, and support during life’s
little moments!

Preface

Who is this book for?

If you are reading this book, you are most likely the parent of a child with a diagnosis of autism, or perhaps you haven’t yet had a diagnosis but you see autistic traits in your child, and are looking for help to manage these, with or without a diagnosis. It may be that you are experiencing some challenges parenting your child, and the usual parenting advice or strategies don’t seem to be working. It may be these challenges that led you, or are leading you, to consider an autism diagnosis, or it may be that you noticed differences in your child’s development from an early stage. Wherever you are on your diagnostic journey, we hope this book will be useful to you, not only in thinking about how to help your autistic child, but also in thinking about neurodiversity more widely, in the context of the society we live in.

About us

I am a clinical psychologist who has specialised in neurodevelopmental conditions, with a particular focus on autism. For many years, I worked at the Evelina London Children’s Hospital, where I was privileged to work alongside some fantastic experts in their fields, many of whom have shared their knowledge and expertise in this book. I still work clinically, alongside my inspirational friend and colleague Marianna Murin, also a clinical psychologist, who has contributed immeasurably to this book both directly and also indirectly, in shaping my thinking and learning about neurodiversity.

My colleagues Charlie Tyack, Vicki Ford, Annemarie Sims and Penny Williams have all contributed to separate chapters in this book because of their phenomenal expertise and experience in their respective fields. I believe that all of these disciplines are essential in helping autistic children to thrive, and I hope this book will reflect the necessity for professionals to work together to support autistic children.

Charlie is a clinical psychologist who works therapeutically with children and adults in the NHS and independently. He has extensive experience of work with autistic people, in a wide range of settings. He worked in the paediatric sleep team at Evelina London Children’s Hospital for several years, and has a range of publications on paediatric sleep.

Annemarie is an occupational therapist with more than twenty-five years’ experience working with children from infancy through childhood with neurodevelopmental conditions. She has worked in the USA, Canada and latterly the UK, where she is currently working at Evelina London Children’s Hospital in the Neurodevelopmental Diagnostic Service.

Vicki began working with children with autism and their families over fifteen years ago at a national charity. She trained assistance dogs to support children in managing everyday activities and accessing their local environment more safely. This experience inspired her to train as a clinical psychologist over ten years ago and she has learnt so much through working with colleagues in specialist neurodevelopmental teams, including the Complex Feeding Team at the Evelina London Children’s Hospital. She would also like to thank all the children with autism and families she has worked with over the years for sharing their experiences.

Penny has over twenty-five years of professional experience as a speech and language therapist, with over twenty-one of those working with autistic children and their parents. She also brings a personal perspective, with more than thirty-six years of being the proud parent of an autistic adult. She has had the pleasure of working with families in various London boroughs, in different settings, and including diagnostic work. She currently works in the Neurodevelopmental Diagnostic Service at Evelina London Children’s Hospital. Over time she has developed a particular interest, clinically and in her research, in empowering parents to support their autistic child’s language and communication.

What we will cover

In the first part of this book, we will set the scene by describing features of autism, including the diagnostic criteria and also some associated features. It is important to have a thorough understanding of autism, as many of the most common challenges are explained by certain cognitive, sensory or other underlying features associated with autism. Understanding these helps parents and professionals target our approaches and strategies in a way that is most useful to the individual.

Following this section, in Part 2, we will discuss what some of the challenges might be in parenting a child with autism, and some of the core principles and techniques which underlie the interventions for more specific challenges. Sometimes, it is helpful to equip your child with the strategies to cope with the situation, in particular situations that can’t be changed; for example, travelling to school, or seeing a dentist or doctor, or in situations where it would be desirable for your child to develop resilience skills, such as going to a shop or a library. At other times, it is more effective to modify the environment, rather than expect your child to change. So the focus of this section is on environmental adaptations to support your child.

In the subsequent chapters, we will look at various challenges in detail, including managing, or mitigating the effects of, feeding difficulties, sleep difficulties, anxiety, communication differences and sensory/adaptive functioning needs. We will outline strategies and approaches which we hope will help your child flourish. Many of the barriers to society faced by autistic children are not necessarily caused by autism, but either by some of the associated features such as anxiety, or by a lack of understanding of the condition by those around the child. However, there are also some challenges which need specific management approaches, and in their respective chapters each expert in their field details some of the main evidence-based approaches, and how you can help your child yourself at home.

Terminology

A note on terminology: over the years a number of terms have been used to describe autism conditions, including autism, Asperger Syndrome, autism spectrum disorder (ASD), Pervasive Developmental Disorder, high functioning autism … in terms of the medical terminology, all of these terms are now subsumed under a single ‘Autism Spectrum Disorder’ category, but throughout this book we will use ‘Autism’ or ‘Autism Spectrum Condition’, in keeping with the philosophy of autism being a neurodivergent condition, representing difference not disorder. When referencing individuals, we will use ‘autistic people’, or ‘autistic children’, which is the terminology agreed upon by consensus in the autistic community. This is not to say that terms such as ‘person on the autism spectrum’, or ‘child with autism’ are not valid or acceptable, but for consistency we will be using the most agreed-upon term throughout the book. The term ‘high functioning’ has also come to be rejected by many, because of the implication that fewer problems are experienced by the ‘high-functioning’ individual, or that autism is unidimensional and one occupies a static position on that dimension. The reality is that an autistic person might function incredibly well in one context, and not at all well in another – we will explore this principle in detail throughout the book. High-functioning also implies that the other end of the spectrum is, by default, ‘low-functioning’ – a term which can be unnecessarily limiting for a child and demoralising for a parent.

Our philosophy

Throughout this book we will adopt a strengths-based philosophy – that is, focusing on helping your child to enhance their strengths, rather than focusing on impairments which need fixing. We will consider principles such as neurodiversity, the ‘Double Empathy’ theory, and context-dependent strengths and challenges, all of which we will examine in detail below. We cannot claim original thought here; for example, the neurodiversity concept is over a decade strong and many talented authors have written eloquently on the subject. Our hope with this book is to weave these ideas into practical support for young people and their parents, and more importantly, to exemplify a cultural shift away from problems and solution-focused interventions to empowerment and self-advocacy.

However, this is not to negate the challenges that are experienced by many young people and their parents, often because of associated conditions such as anxiety, or sensory responses, rather than autism itself. Therefore inevitably at various stages in this book, we will focus on strategies that aim to alleviate distress, and on changing behaviour, changing the environment around a child, and changing attitudes in order to support your autistic child.

Finally, although this book is aimed at the parents of autistic children in middle childhood, there will be times when we refer to ‘autistic people’ rather than ‘autistic children’ – this is to recognise that autism is a lifelong condition, and autistic children grow into adults – many of the features/challenges we discuss apply to autistic people of any age.

PART 1

Understanding autism

Ann Ozsivadjian

Let’s start with neurodiversity

Recently, rather than try to fit people into medical categories, which doesn’t always work, people have started to think in terms of the diversity in human brains, and consequently, human behaviour. Neurodiversity as a concept is generally attributed to Judy Singer, whose 1998 thesis included the term. It refers to the natural diversity in the way our brains work, just as there is diversity in hair colour, eye colour and height. Originally developed to conceptualise autistic differences, it is now also widely used as an umbrella term to include Attention Deficit Hyperactivity Disorder (ADHD), dyslexia, dyspraxia, tics and some mental health conditions such as Obsessive Compulsive Disorder (OCD). Rather than thinking in terms of disorder or no disorder, neurodiversity recognises that there will be difference or divergence from the norm, without the need for cut-offs or thresholds. It is also a move away from thinking about conditions such as autism as a disability – recognising difference rather than deficits. Neurodivergent refers to someone whose brain processes, learns and/or behaves differently from what is considered ‘typical’. Neurotypical refers to people who think and behave in a way that is typical for the general population. However, there are times when a diagnosis is necessary or useful, and for that, clinicians do need to recognise diagnostic thresholds and boundaries in order for young people to access support services. Therefore we need to strike a balance in the terminology used in clinical reports and textbooks, considering what will be most useful in helping families access support, but also thinking about the young person’s identity formation and also the role of the language we use in shaping the understanding of others around the young person.

Generally speaking, in the medical textbooks the features below are referred to as deficits or impairments. However, recent conceptualisations of neurodiversity are turning some of these notions on their heads. For example, lacking empathy is a bad thing, right? Well, in most situations, the ability to empathise is useful and the cornerstone of many reciprocal relationships. However, there are also some situations or some jobs in which it is useful to think practically rather than emotionally, for example when making decisions under pressure. Similarly, regarding ‘restricted interests’ – having particularly in-depth knowledge about vacuum cleaners, airports or Beethoven concertos might seem socially unusual aged 5 or 7 or 11 – unless one goes on to find others with a similar love for these things, and/or develops a highly specialised career out of the interest, due to the single-minded dedication they have for their ‘special interest’ and also talent.

What is autism?

Autism is a condition that affects social communication, and current estimates are that it affects about one in sixty-seven of the population. Autistic people generally have some difficulty with communicating with others, although how this manifests can vary widely. For example, some autistic people, including children, have sophisticated language skills, and can be extremely articulate (sometimes unusually so), but their ability to communicate with strangers or understand social intention or subtleties such as sarcasm may be limited. Others may have profound language and communication difficulties. Some autistic people will have intellectual difficulties which may affect their learning to varying degrees, whereas others have no difficulty with learning, and are capable of achieving great academic, professional or creative successes. And some autistic people, with or without formal diagnoses, may function very well in areas such as employment or education, whereas others, even if intellectually able, may need a high level of support. So, although autism is known as ‘autism spectrum condition’, there are in fact many spectrums (or spectra, if you are a Latin purist) within the spectrum, as it were. We will explore these spectrums in more detail throughout this section because an understanding of these is important when thinking about how to help your child as best as possible. There is no ‘one size fits all’.

Autism is also sometimes called a neurodevelopmental condition, that is, a condition that affects brain development. This means that the neural pathways necessary to understand human behaviour and communicate may develop and function differently in autistic people. We also know that autism is highly heritable; however, not one but many genes are implicated in the development of autism, and it is the interaction of the genes that can cause varying degrees of impairment. In this book, we will focus mostly on helping your autistic child, rather than focusing on science, but on that subject, it is very important to say that autism is NOT caused by parenting styles, vaccinations or diet. This is not to say that certain dietary changes haven’t been helpful for some autistic children, and equally, later on, we will talk about adapting your parenting style to manage certain situations. But the key thing here is to know that these things do not cause autism.

Features of autism

The two main domains characterising autism recognised by international classification systems are 1) social communication and interaction skills, and 2) behaviours and interests which might be more repetitive or narrow in range than expected, which includes cognitive inflexibility and sensory difficulties. Let’s take a more detailed look at both, and what they might look like in real life.

Social communication and interaction differences

This could include some or all of the following:

•Differences in reciprocating people’s emotions or social behaviour, including a reduced sharing of interest or emotions. For example, when a child is interested in something, typically they will point at it and look at you, referencing you to see if you are interested in it too. Or they might try to make you interested in it by grabbing you and saying ‘Look!’ while shifting their gaze between you and the thing they are interested in. Similarly, if children are upset, they will often seek comfort from a caregiver, or conversely, if someone else is upset, even very young children may show empathy and try and pat them better, for example. In autism, these behaviours might be less frequent or not seen very often at all.

•Differences in initiating or responding to social interactions. Children develop skills in approaching other children and initiating play, and making and keeping friends. Underpinning these skills is a desire for social interaction, or social curiosity; for example, very young children will sometimes ask ‘How old are you? What’s your favourite colour?’ The reason for asking these sorts of questions is usually to initiate social interaction; for example, to find out if you have shared interests, which could form the basis of some sort of relationship. In autistic children, these behaviours may either be absent, due to a lack of social curiosity, or the motivation for asking questions might be different; for example, gathering information because of a particular interest in people’s ages rather than a desire to interact with that person. Alternatively, a child might ask questions because they have seen other children doing so, and they have learnt that it’s the right thing to do, but their delivery, or response to the response, might not be entirely natural.

Children also learn how to respond to the social approaches of their peers. Typically, an interaction will have some to-and-fro of conversation, and sharing of interests in a reciprocal way. For autistic children, however, social approaches might cause confusion or fear, and hence they may respond with aggression or withdrawal, or they might respond in ways which other children might find unusual, for example listing their favourite things. Sometimes signs of autism are not noticed until a child begins school or nursery, and starts to interact with other children.

•Differences in developing, maintaining and understanding relationships. Following on from the point above, once we have made or responded to a social approach, how we then continue the interaction affects whether or not we form lasting relationships. Social skills such as knowing how much information to share, when and with whom, are very important in making and keeping friends. Cooperative play skills are important in younger children to make playdates an enjoyable experience which they will want to repeat. Autistic children may have difficulty with either the skills or motivation to maintain friendships. They may have difficulty joining in games that they are not interested in, or sharing toys – this may be driven by ‘theory of mind’ differences, which we will discuss shortly – that is, understanding others’ thoughts, desires and intentions. For sharing to be a pleasurable experience, one needs to appreciate why sharing is important, and enjoy giving pleasure to others; if we don’t get this, cooperative play can be very difficult. Autistic children may also not always know what is socially appropriate behaviour, and hence may not adapt behaviour according to a situation – for example, young children will learn quite quickly when it is OK to run around and let loose (e.g. in a playground) and when it is not OK (e.g. in a library or a church service), but an autistic child might need very explicit guidance with this. We learn this information through a variety of means, including direct instruction, social observation and also social motivation – a desire to please others. Reduced social motivation or social ‘knowing’ can result in what looks like socially inappropriate behaviour.

•Reduced non-verbal communication. This refers to unusual eye contact for example, or absent eye contact, using fewer gestures than normal, or fewer facial expressions. Generally speaking, in most cultures a degree of gesture is common when we communicate; for example, waving goodbye, showing how big something is with our hands, or emphasising a point we are trying to make. Equally, with our facial expression we will show the emotion attached to a statement we are making verbally, or our reactions to something someone is saying: shock, joy or vexation for example. Crucially, we also share those facial expressions with the people with whom we are communicating. Autistic children or adults may use gesture or facial expression less frequently to communicate, and these may not be well integrated with each other; for example, smiling when talking about something distressing, or not looking at someone when they are smiling at something they said.

In the second area of difference, which covers sensory differences, and also behaviours or interests that seem more repetitive or narrow in focus than expected, we might see:

•Stereotyped or repetitive motor movements. It is important to say that all children will display some of these behaviours some of the time. For example, lots of young children flap when they are excited, or line up and group toys – this is a normal part of development. However, when a child does some of these behaviours to the exclusion of other play behaviours – only lining up cars for example, or spinning their wheels for a long time rather than racing the cars or making up a game – this could be a stereotyped behaviour. Other stereotyped movements might include finger twisting, rocking or peering at things from the corner of their eyes. This domain also includes echolalia, which refers to repeating what someone else has just said, either immediately or after a delay. Again, this is a normal part of language development, but if it persists after about age 3, or if a child’s main language production consists of echolalia, this may be a sign of autism.

•A preference for sameness or inflexible adherence to routines. This might include having to eat the same food every day, for example – this can range from having a rota of preferred foods to a very restricted diet of two or three items only. Some autistic children are also very particular about certain brands of food, or textures – if a brand stops making a certain item, it can be a disaster for some parents. Another aspect of inflexibility might include difficulties with transitions, from one activity to another, or one place to another. It can also include extreme distress at changes; some of these changes might be obvious to others – a different teacher, for example – or they might be tiny changes in the environment which other people might not even notice, such as an object not being in its usual place. Inflexibility of thought and behaviour is a key feature of autism, affecting many autistic people from those with severe intellectual disability to verbally able people.

•Highly focused interests. These might be unusual in their intensity or focus, or in both. Again, many children have a fascination with certain things or topics, such as dinosaurs or trains, which in itself is not unusual. When this becomes unusual is a matter of judgement; the key words being ‘intensity’ and ‘focus’ – if a child is thinking about dinosaurs all the time, for example, so that the topic comes up to an unusual degree in conversation, to the exclusion of other topics. Some autistic children have interests in unusual topics such as washing machines or vacuum cleaners, or they have encyclopaedic knowledge about an interest such as the American Civil War.

•Under- or over-responsiveness to sensory input. This could include sensitivity to certain materials, or labels in clothes for example, or certain smells or sounds. It might also include an unusual interest in sensory aspects of the environment, such as a visual fascination with lights or spinning wheels.

It is important to reiterate that no single feature in itself would mean that an individual is autistic. Reaching a diagnostic conclusion should be a carefully conducted process, using diagnostic guidelines as well as clinical judgement, and also taking into account the impact on an individual’s life.

Masking

A note here on masking, also known as camouflaging: now that our definition of autism is broader and more people are recognised as being on the spectrum, it is also increasingly recognised that many autistic children are adept at masking or camouflaging their own autistic traits, and/or mimicking neurotypical behaviour. Therefore it is important to know that some of the classic features noted above, such as unusual or absent eye contact, may not be seen in some autistic young people, because they have learnt that eye contact is expected in certain situations and make a conscious effort to look at people during interactions. We all mask at times, such as at work meetings for example, nodding along even if we’re not sure what’s actually going on; or at parties, laughing along even if you don’t find something very funny. However, for autistic children and adults alike, this may become a daily norm.

This can lead people to question ‘But are they really autistic?’ or make comments such as, ‘Your child doesn’t look autistic!’ because your child doesn’t fit in with many people’s idea of what autism is. Often these comments are well meant, and in many circumstances, a patient explanation can go a long way in educating or increasing awareness. At other times you may not feel like challenging or entering into a conversation about your child’s particular presentation. This is your choice (and your child’s, when they are old enough to make this choice).

While masking can be a very adaptive strategy in some contexts, it can take its toll on wellbeing, and exhaustion and fatigue are reported as one of the most frequent consequences of masking/camouflaging. Some parents report their children coming home exhausted from school, from the effort of trying to fit in. Another frequently reported consequence is increased anxiety and stress about ‘getting it right’, as well as low mood/depression, loneliness and loss of identity.

Autism and gender

This book is for everybody and therefore we have not made differentiations in terms of topics based on gender. In recent years some topics have been considered to be particularly relevant to girls, such as masking, and indeed research has shown that autistic girls are more likely to mask, and are more socially seeking, with more ‘typical’ special interests than boys, such as horses or fashion, rather than unusual interests such as vacuum cleaners. However, as our understanding of autism has become more nuanced, we are recognising more and more that boys mask too, that both boys and girls have friendship difficulties (although these may be qualitatively different), and that special interests in both genders can span a wide range of topics, with many girls these days being interested in traditionally ‘male’ topics such as coding and chess. Furthermore, making these distinctions may exclude those of a non-binary or other gender representation, so in general throughout the book, we have avoided making gender-based distinctions. However, research is raising some important cautionary points: for example, that autistic girls are referred less frequently for diagnosis, and are typically identified later than boys, which means that they may be missing out on important support services, and it is important to understand some of the reasons why. Often, it is only when girls present with additional problems, such as anxiety, depression, conduct problems or learning difficulties, that concerns are raised about a potential autism diagnosis.

Research to date has identified some key areas of difference between how girls and boys might present. The first important area is social motivation. Girls may be more likely to be socially seeking and have friendships than autistic boys; however, the friendships may differ qualitatively from those of non-autistic girls in that they may be more intense and more subject to conflict. Girls also tend to present with fewer of the repetitive or stereotyped features such as flapping or spinning.

Second, we know that strong interests and preoccupations are an important feature and one of the key diagnostic features for Autism Spectrum. The difference we sometimes see between girls and boys is that while circumscribed intense interests for boys might be in the areas more stereotypically associated with autism, such as trains or mechanics, girls’ interests might be related to more socially motivated preoccupations, such as interest in a particular band and following them on social media, through to intense interest in religions, animals, movies and pop culture. However, children are often interested in gender-neutral topics, and these days, as noted above, they are less likely to fit into ‘gender stereotypes’; I have met both boys and girls with encyclopaedic knowledge in history and physics, for example, or K-pop.

Thirdly, there is the issue of masking/camouflaging, mentioned above. While we know that many autistic people of any gender feel under pressure to mask their autistic features in order to fit in and avoid discrimination and social isolation, many studies have found that autistic females camouflage more than males. As Sarah Hendrickx, a strong autism advocate, autism consultant and writer of many books, who has late-diagnosed autism herself, always says: ‘Autistic females spend the first twenty years of their lives hiding their autism and the next twenty years of their lives trying to convince people they really have it …’

Other characteristics related to autism

As well as the established diagnostic features, recent research has recognised that there are certain other characteristics which underlie, drive or occur alongside some of the core areas of difficulty in autism. Understanding these can be crucial when thinking how to help your child.

Understanding other people’s perspectives. Theory of mind, or mentalising, refers to the ability to infer other people’s thoughts, feelings and intentions, and make predictions of their behaviour based on these inferences – in other words, understanding the minds of others. This is such an important skill for humans; in order to form relationships, we need to be able to understand each other’s perspectives and choose how we act, accordingly. For example, in order to turn-take in conversation, we need to recognise that it is boring for someone else to simply listen to a monologue. Theory of mind is crucial for empathy and is also a cornerstone of successful relationships – if somebody’s facial expressions and body language are suggesting that they are anxious, we need to be able to represent this in our own mind, in order to think of ways to put them at their ease. And in order to engage in pretend play, children need to be able to create characters with thoughts and feelings. Theory of mind starts to emerge around ages 3–5, when young children begin to realise that other people have different thoughts and perspectives to their own. They begin to appreciate that people have representative thought, that they have beliefs, wishes, desires, that they can pretend, have ideas and can imagine.

A large body of research has shown that many autistic children have difficulties acquiring theory of mind, which may be related to differences in joint attention and imitation in early development. Later research showed that this is not as simple as having or not having theory of mind, but that the route by which it is acquired may be different. For example, some children may learn it through logical deduction (‘He said this, which must mean he thinks that’) rather than an intuitive, natural process. Similarly, more nuanced research has shown that a number of autistic children pass these tasks consistently, meaning that not everyone with autism has difficulty understanding other people’s minds. Finally, even if people are able to pass experimental theory of mind tasks, this does not necessarily mean that in real life they are able to apply those skills; factors such as anxiety and language processing can sometimes get in the way.

Processing the detail rather than the big picture. Another influential theory which gained a lot of recognition in the 1990s, Central Coherence Hypothesis refers to the way autistic people process information. Researchers suggested that autistic people may be better at processing the detail in information rather than a global whole. This could be something visual, for example seeing the detail in a complex diagram rather than the overall image or verbal information, for example processing language word by word rather than getting the ‘gist’ of something, or the ‘bigger picture’. This may be because processing context is compromised – which could explain why some autistic children are proficient readers but not so skilled at reading comprehension (i.e. extracting meaning from text). Similarly, social situations can be overwhelming for some autistic children; because processing all the information – language, non-verbal cues, sensory aspects of the environment, etc., may simply be too difficult, and filtering out the irrelevant information may not be easy for them.

Again, this was conceptualised initially as a deficit, with the assumption that ‘bigger picture’ processing is always desirable for social success or otherwise. However, there are many scenarios where the reverse is true – where processing information at a detail level is desirable, or in fact necessary, for example when proofreading a document, filing accounts or performing eye surgery – you would definitely want someone with an eye for detail performing any of these tasks!

Difficulty managing uncertain situations: intolerance of uncertainty. This is a cognitive style which has been linked to a number of mental health conditions but has only recently been investigated in autism. This is surprising, given that a hallmark feature of autism is a preference for sameness. The research is robust in demonstrating that autistic children and adults have a much greater intolerance for uncertainty, by using questionnaires asking whether they prefer to follow routines, or prefer things to stay the same, or whether they become anxious when things happen suddenly. This intolerance of uncertainty, and conversely, preference for sameness, is highly linked to anxiety. In fact it is so strongly linked to anxiety that some researchers have asked whether this is the key driving mechanism in the high rates of anxiety that we see in autistic children.

Alexithymia. This refers to a difficulty recognising and reporting one’s own emotions, and is part of a wider group of difficulties called interoception problems. Interoception problems refer to difficulties recognising any internal signal, including hunger, tiredness and pain, and alexithymia falls within this. Alexithymia is not exclusive to autism – in fact, it is implicated in a number of other mental health difficulties, but it is estimated that as many as 50 per cent of autistic people will also experience alexithymia. Difficulty recognising one’s own emotions can cause confusion and distress, and can make it harder to regulate one’s own emotions – if you can’t recognise your emotions, especially at the early stages, and you don’t employ strategies to manage your emotions at those early stages, they can quickly spiral out of control and cause meltdowns.

Executive function difficulties. This refers to the cognitive skills that help us to organise, plan and process information effectively, and help us with goal-directed behaviour. They include cognitive flexibility, problem-solving, planning and initiation. Working memory and inhibition are crucial skills in this area, too. These skills are related to, but separate from, core intellectual skills such as verbal and non-verbal reasoning. Research evidence has consistently shown that autistic people can have difficulties in this area, although not all autistic people have problems with all executive functions all of the time.

As we discussed earlier, a key difficulty autistic people often have is that of cognitive inflexibility, i.e. difficulty switching flexibly from one thought or topic or activity to another. This could be why autistic people have difficulties with a change of routine or new situations. Cognitive flexibility is necessary in so many aspects of life, including social interactions, as conversations can move rapidly from one idea or person to another, or to problem-solving if things aren’t going as expected. So a difficulty in this area can make life challenging for anyone. For example, if a train doesn’t arrive, how would you problem-solve the situation? If your favourite restaurant has run out of your favourite meal, what do you do? If a friend can’t make a social arrangement, would you be infuriated or deeply disappointed, or would you accept the situation, find something else to do and rearrange to another time? How flexibly we react to the various challenges thrown at us in life can determine how successful we are, in our short-term and long-term goals.

Another executive function difficulty that can make life challenging is disinhibition – this is particularly so for autistic children who might also have co-occurring ADHD. Knowing when not to say or do something is as important as knowing what to do or say. Children with autism frequently get into trouble, or fear that they have offended people, for saying things out of turn, for example, or for stimming (that is, engaging in self-stimulatory behaviour such as flapping or other repetitive movements) at a time or place that has led to them experiencing teasing.

The ‘double empathy’ hypothesis – helping the neurotypical world understand autism

Some of these points bring us on to the topic of ‘double empathy’, which refers to the concept that it is not simply that autistic people do not understand the neurotypical world, but that the neurotypical world fails to understand autism. Therefore problems occur in both directions – and the onus should not solely be on autistic people to overcome their difficulties to fit into a neurotypical world, but rather that the neurotypical world also has a duty to understand and accommodate autistic minds. So, to take the example of theory of mind, while it is true that an autistic individual might have difficulty making sense of another person’s behaviour at times, equally, some behaviours or interests of an autistic person that might seem odd, might be completely understandable if one applies an understanding of autism. For example, if a child gets into trouble for correcting a teacher, seeing this as a need for accuracy rather than impertinence can completely alter both the approach of the teacher and the attitude of their peers, and ultimately that child’s experience of school. This does not mean that the behaviour should go unaddressed, rather that the approach one takes in addressing it can make a huge difference to a child. It also raises the question, ‘Who is this a problem for?’ So, when intervening with a ‘problem’ behaviour, such as stimming (self-stimulatory behaviour which involves repetitive actions), we need to ask, why, when and how is this a problem for my child? So, for example, if the drive to stim is so strong and so constant that it restricts your child, or interferes with important learning opportunities, or your child tends to stim in settings which draws unwanted attention to themselves, then it is important to intervene. However, if your child stims only in private or around people who are accepting and understanding, or if they choose to ignore any unwanted attention, or choose to educate their peers about stimming, then there isn’t an issue – it can even be a strength, if it means it helps them with emotion regulation, for example.

When is this a problem? Context-dependent difficulties – or strengths

Following on from the question ‘Who is this a problem for?’ is the question ‘When is this a problem?’ Depending on the situation, the same quality can be both an asset and a hindrance. For example, let’s take rigidity, or cognitive inflexibility. If there is a sudden change of plan, and you’re inflexible and unwilling to consider alternatives, you might become disappointed, distressed, or perhaps angry. However, let’s consider another alternative: you are trying to learn a new skill, but no matter how many times you try, you don’t seem to be able to manage it, but you keep trying anyway – and finally, Eureka! It clicks into place. Inflexibility in this case can equal dogged determination, which may in turn lead to achieving something that seemed unachievable. We could also consider many famous people throughout history who everybody thought were crazy in their day, but rather than flexibly adapt to the situation and think, ‘Oh well, if everyone says so, I must be crazy’, luckily for history, Galileo, Newton and Gandhi all stuck steadfastly to their principles, despite their numerous critics’ assertions about their sanity!

Some myths about autism busted

As our understanding of autism has expanded from the very narrow, early definitions, some of the associations that were previously made with autism are now no longer universal truths.

Autistic people have no imagination. False! While it is true that some autistic people have difficulty with imagination – which in young children may present as a lack of imaginative play, or a lack of social imagination – many autistic people are capable of incredible creativity.

Some autistic people are incredibly talented artists, poets and thinkers – all of which require imagination. Throughout this book, we have included artwork and poems created by autistic children. There has also been a lot of speculation about whether famous characters such as Albert Einstein and Steve Jobs had autism – the ‘outside the box’ thinking that they showed requires imagination.

Autistic people have no empathy. False! While autistic people may have difficulty with understanding others’ perspectives, this does not mean that they lack compassion or have no care for other people’s feelings. At times autistic people may appear to lack empathy for many reasons, which could include: difficulty disengaging with what is in their own mind; difficulty understanding empathy on a cognitive level, that is, recognising someone else’s emotion; lacking compassionate facial expressions; or fear of saying or doing the wrong thing. However, this does not necessarily represent unkindness or behaviour lacking in empathy. This is a good example of a spectrum within a spectrum; as in the general population, autistic people will vary widely in their ability to empathise with others or show compassion.

Autistic people have special skills like ‘Rain Man’. Sometimes true. Some autistic people do have some incredible abilities which might seem superhuman; for example, learning entire sonatas on one hearing, or being able to produce incredibly accurate and intricate drawings of buildings they have seen just once, or knowing the day of the week of a date far in the past. However, most people with autism have strengths and difficulties like the rest of us, although these may be more pronounced in autism.

People with autism are more likely to have ‘spiky’ cognitive profiles – this means learning skills, such as reasoning skills and processing speed that vary more widely than most people’s – for school-aged children this can result in difficulties in the classroom, which are often undetected unless an educational or clinical psychologist performs an assessment, or a perceptive teacher realises a child is not reaching their full potential. So, for example, this can mean difficulties with either, or both, working memory and processing speed, in comparison to verbal and non-verbal reasoning skills; if you have difficulty writing down your ideas as quickly as you produce them, this can be frustrating. Or, you might have excellent reading skills, but reading comprehension might be difficult – that is, extracting meaning from reading. All of these are examples of ‘spiky’ profiles often seen in autism. Sometimes these spikes are so ‘spiky’ as to create a very special skill.

Autistic people are not interested in socialising or having friends. False! Mostly. Many autistic children are keen to have friends but lack the skills to make or keep them; if they have had bad experiences socially, they may withdraw and come across as not wanting friends, but often this could not be further from the truth. Many want to find at least a few like-minded people whom they can trust and with whom they can share interests. Some autistic people do say they are genuinely happy with their own company and have no need for friends, which is of course OK too; it is important that we do not make assumptions about unhappiness and loneliness – but we do need to be asking the right questions to ensure people’s emotional wellbeing does not suffer due to social isolation. For example, during the COVID-19 pandemic, research showed that although some autistic people found lockdowns reduced their anxiety greatly, many also felt more isolated than before, and felt the effects of this acutely.

So in summary, our knowledge and understanding of autism has come a long way, even just in the past decade or so. Our understanding of the spectrum has broadened, and there is a recognition that many more people are autistic than was previously recognised, and that autism can present quite differently, and uniquely in each individual. Rather than trying to change or ameliorate autism, we are getting better (although there is still a long way to go) in thinking about how the world needs to change to accommodate the diverse needs of autistic people. For the remainder of this book, we will think about strategies for both equipping young autistic people, and their parents, with skills to manage challenges, as well as environmental modifications.

Key learning points:

•Autism is a condition that affects social communication.

•Common challenges include difficulties with relating to other people, flexible thinking and behaviour, and sensory over- or under-responsiveness.

•Our understanding of autism has advanced a great deal in recent years, dispelling many myths along the way.

•Neurodiversity is a term which has become widely used, to reflect the natural diversity in how our brains work. It has also helped us move away from a medical disability model to a more representative conceptualisation of neurodivergence.