Girls and Autism

Educational, Family and Personal Perspectives

Barry Carpenter, Francesca Happé, Jo Egerton, Barry Carpenter, Francesca Happé, Jo Egerton

• Publisher: Routledge
• Year: 2019
• Print ISBN: 9780815377252
• eBook ISBN: 9781351234405
• Edition: 1
• Topic: Education
• Subtopic: Education General

Often thought of as a predominantly 'male' disorder, autism has long gone unidentified, unnoticed and unsupported in girls – sometimes with devastating consequences for their social and mental well-being. As current research reveals a much more balanced male-to-female ratio in autism, this book provides crucial insight into autistic girls' experiences, helping professionals to recognize, understand, support and teach them effectively.

Drawing on the latest research findings, chapters consider why girls have historically been overlooked by traditional diagnostic approaches, identifying behaviours that may be particular to girls, and exploring the 'camouflaging' that can make the diagnosis of autistic girls more difficult. Chapters emphasize both the challenges and advantages of autism and take a multidisciplinary approach to encompass contributions from autistic girls and women, their family members, teachers, psychologists and other professionals. The result is an invaluable source of first-hand insights, knowledge and strategies, which will enable those living or working with girls on the autism spectrum to provide more informed and effective support.

Giving voice to the experiences, concerns, needs and hopes of girls on the autism spectrum, this much-needed text will provide parents, teachers and other professionals with essential information to help them support and teach autistic girls more effectively.

Part I

Introduction

Chapter 1

Where are all the autistic girls?

An introduction

Barry Carpenter, Francesca Happé and Jo Egerton

Where are all the autistic¹ girls? According to the UK’s National Autistic Society (NAS), one child in every 100 has autism, and 70% of those are educated in mainstream schools (National Autistic Society 2013). A diagnosis of autism spectrum disorder (ASD) is based on core behaviours appearing in early development (usually before three years of age): impaired development in social interaction and communication, and restricted and repetitive interests and activities (American Psychiatric Association 2013; Wing and Gould 1979). Although behavioural-cognitive traits associated with autism are found in the general population, it is the quality, intensity and co-occurrence that lead to a diagnosis when, together, these traits are impairing in everyday life (Lai et al. 2013). Until recently, there was thought to be a large gender gap in autism, with the ratio of boys to girls widely accepted as at least 4:1 (Dworzynski et al. 2012).² However, researchers now propose a gender ratio in autism that is closer to 2:1 boys to girls (Zwaigenbaum et al. 2012).

Existing screening and diagnostic criteria have largely developed from Kanner’s and Asperger’s observations of autistic boys in the 1930s and 40s (Kanner 1943; Asperger 1991; Frith 1991; Silberman 2015; Wing 1981) and may lack validity when diagnosing girls (Cheslack-Potava and Jordan-Young 2012; Rivet and Matson 2011). There is some evidence of a gender-bias (Dworzynski et al. 2012; Gould and Ashton-Smith 2012); girls on the autism spectrum are typically diagnosed later and with more extreme behaviours than autistic boys, and those girls without additional intellectual or behavioural problems are likely to ‘fly under the radar’ (Dworzynski et al. 2012; Egerton et al. 2016).

In 2012, the NAS surveyed more than 8,000 people on the autism spectrum and their family members in the UK. They found that 41% of autistic females (compared with 30% of autistic males) had experienced misdiagnosis and were less likely to be given access to extra support. Only 8% of intellectually able autistic girls under six years (compared with 25% of boys) were diagnosed, rising to 20% and 50% respectively by the age of 11 years (Bancroft et al. 2012; Clark 2016). Nicola Clark, an autistic woman diagnosed in her forties, writes:

Many women remain undiagnosed until their 20s or 30s … If a woman has had children, is in a relationship, is interested in makeup, music, fashion, or in my case doing stand-up comedy, this level of sophistication apparently makes diagnosis ‘less clear-cut’. At worst, it apparently makes autism seem ‘nonexistent’.

(Clark 2016)

Almost every professional in the education, health and care sectors will work with children on the autism spectrum at some point during their career. While many will be aware of the behavioural profile traditionally associated with the male-oriented diagnostic criteria, psychologists and psychiatrists are now suggesting that many girls do not fit this profile (Happé et al. 2006). In mainstream schools, for example, girls on the autism spectrum are frequently misunderstood or overlooked for support, especially if they have intellectual functioning in the average range. As Baldwin and Costley (2016) observe, ‘the absence of ID [intellectual disability] does not equate to an absence of learning support needs’.

Many autistic girls have a desire to fit in with their peers. It appears that, to a greater extent than most autistic boys, many girls use protective and compensatory factors to give the appearance of social conformity and integration with their peer group. They may use observational learning to interpret and imitate facial expressions, create scripts for social interaction and apply rules by rote to social-emotional situations and friendships (Tierney et al. 2016).

Girls’ repetitive and restrictive interests, while having the classic autistic intensity and duration, tend to be gender-influenced – the ‘little professor’ approach but applied to pop stars, boys, pets and fashion, for example. As Sarah Wild, head teacher of Limpsfield Grange School for girls with communication and interaction difficulties, states:

Just because the girls aren’t obsessed with Thomas the Tank Engine and lining things up in neat rows doesn’t mean they are not on the spectrum. Just because they can make eye contact, have a reciprocal conversation with someone for five minutes and exchange small pleasantries doesn’t mean they are not autistic. It means they’ve learned to do it. We have to redefine what we think autism is.

(Lee-Potter 2016)

Autistic girls’ education is also at risk unless they receive appropriate support or reasonable adjustments for their autism (Baldwin and Costley 2016). Unable to cope with the unrealistic expectations and demands of the school environment, unsupported girls on the autism spectrum may become school refusers or exhibit behaviours that lead to school exclusion (Sproston et al. 2017). Others become the quiet, anxious girl at the back of the classroom, concealing their difficulties behind a socially acceptable mask (Tierney et al. 2016).

For many autistic boys, their autism is externally expressed (e.g. in conduct disorders); however, autistic girls seem more likely to conceal and internalize difficulties. Over time, this imposes a detrimental psychological burden, making autistic girls vulnerable to emotional difficulties and to mental health disorders such as anxiety, self-harm, depressive, personality, and eating disorders (Baldwin and Costley 2016; Hull et al. 2017; Rubenstein et al. 2015). There are growing indications that autism may be an underlying cause for a significant number of undiagnosed girls experiencing these difficulties.

Currently, many professionals do not have sufficient awareness or knowledge of autistic girls to consider or identify autism as a possible cause of mental health or behavioural issues. Girls with undiagnosed autism and their families may receive blame, censure and exclusion instead of support. The strategies adopted to address their issues may be inappropriate and, at worst, have catastrophic lifelong impacts.

Professionals need new information to better understand girls on the autism spectrum, enabling them to recognize, understand, refer, support and teach autistic girls effectively. To avoid bleak outcomes, autistic girls need a timely diagnosis, followed by an in-depth needs assessment leading to relevant, personalized interventions in the areas of education, social skills and relationships. Without this scaffolding, these girls are in danger of growing up to be women who remain ‘undiagnosed, without employment, hav[ing] no social contacts outside the family and … almost wholly dependent on their parents to support them in everyday living’ (Gould and Ashton-Smith 2012).

In the following chapters, autistic girls and women, their families, and professionals from a range of disciplines offer insights, knowledge and strategies from their lived experiences and professional perspectives to enable those living or working with girls on the autism spectrum in educational environments to provide more informed and effective support to these girls and their families.

Overview of chapters in this book

Girls and Autism is presented in five parts, contextualized by Chapter 2, ‘What does research tell us about girls on the autism spectrum?’. In that chapter, Francesca Happé, professor of cognitive neuroscience at King’s College London, reviews what we do, do not and must know about girls on the autism spectrum based on the latest research findings. She considers male-to-female ratios in autism and contemplates a ‘missing’ population of autistic girls and women which has been overlooked by traditional diagnostic interpretations. She discusses the male-biased stereotypes and diagnostic overshadowing that can result in misdiagnosis, late diagnosis or lack of diagnosis for autistic girls and women, and the implications for girls’ mental health and educational needs as they develop within a neurotypically oriented world.

Following Parts I and II, the part-title pages for, Parts III–V include insights from girls on the autism spectrum at Limpsfield Grange School, a residential secondary special school in the UK for girls with social communication and interaction needs, many of whom have an ASD diagnosis.

Part II: Girls and autism: The lived experience

The chapters in Part II describe the experiences of autistic girls and their families from early life, through school to adulthood. Chapter 3 is written by Katie Buckingham, founder and director of the award-winning Altruist Enterprises. Diagnosed with Asperger syndrome at 16 years old, she describes her personal account of living with autism, mental health issues and her journey to discovering the advantages of the condition.

Chapter 4, by well-known broadcaster and Royal College of Medicine patient lead Carrie Grant, describes her family’s experiences, focusing on two of her daughters, who have autism spectrum diagnoses. She writes about their developmental differences, school experiences and the fight to get help; she writes about strategies, looking after yourself as a parent, and the great hope she and her husband have for their children.

In Chapter 5, Sarah Wild, head teacher of Limpsfield Grange School in Surrey – the only maintained special school for girls with communication and interaction difficulties in the UK – introduces the reflections on autism by Limpsfield Grange girls that are interleaved throughout the book.

Venessa Bobb, founder of A2ndvoice, run by parents and carers of autistic children and adults, and a National Autistic Society branch officer, is mother to three children on the autism spectrum, two of whom are girls, and only one of whom is diagnosed. In Chapter 6, Venessa reflects on bringing up her autistic children within her own community, and considers autism from a Black and Minority Ethnic (BAME) perspective.

Sharonne Horlock, a secondary academy SENCO and parent of a young autistic woman, writes in Chapter 7 about the need for school communities to know more about, understand, and recognize autism within girls, and to acknowledge that supportive strategies, embedded in whole school practices, are a corporate responsibility. She introduces strategies identified by female autistic students within a mainstream setting that can shape an autism-welcoming environment.

Part III: Girls, autism and education

In Part III, the chapters focus on education – from leadership perspectives and curriculum emphases to exclusion experiences. In Chapter 8, Rona Tutt, educational author, speaker and a former president of the National Association of Head Teachers (NAHT), situates autism in relation to recent SEND system reforms and considers the implications for education professionals supporting autistic girls. She focuses on how leaders in educational settings can use the reforms to improve the recognition of girls on the autism spectrum at all stages of education, and how schools can develop these girls’ well-being and sense of self-worth.

Sarah Wild, in Chapter 9, explores teaching approaches and strategies that can be used when educating autistic girls, and considers the importance of building a curriculum that enables their academic progress, communication, independence, positive mental health/emotional wellbeing and potential employment routes.

In Chapter 10, Jane Friswell, an international education consultant, author and director of SEND Consultancy, an enterprise established with young people with special educational needs and disabilities (SEND), discusses school exclusions and the emerging evidence of higher exclusion rates among autistic girls – both those with a diagnosis and those as yet unidentified – and how to ensure sympathetic and personalized inclusion of girls on the autism spectrum.

Ruth Fidler, an education consultant specializing in pathological demand avoidance (PDA), describes how PDA is increasingly becoming recognized as part of the autism spectrum. In Chapter 11, she explains the effective educational strategies which, while overlapping to a degree with those for other autistic students, require adaptations in style and a different dynamic in order to reduce anxiety around demand-associated loss of control, to achieve co-operation, to facilitate learning and to promote emotional wellbeing for girls with PDA.

Part IV: Autism, adolescence and social networks

This section focuses upon adolescence and identity in relation to sex, gender, friendships and mental health. In Chapter 12, Dr Meng-Chuan Lai, assistant professor at the Department of Psychiatry, University of Toronto, discusses the importance of neuroscience when considering autism, sex and gender. He considers the insights that neuroscience provides into how and why autistic people process, experience and respond to social situations differently to their neurotypical peers, as well as the influence of gender on the brain.

In Chap...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Acknowledgements
• List of contributors
• Foreword
• Preface
• PART I: Introduction
• PART II: Girls and autism: The lived experience
• PART III: Girls, autism and education
• PART IV: Autism, adolescence and social networks
• PART V: Autistic girls: Looking to the future
• Index