Martian in the Playground

Understanding the Schoolchild with Asperger′s Syndrome

Clare Sainsbury

• Publisher: SAGE Publications Ltd
• Year: 2009
• ISBN:
  9781446243985
• Edition: 2
• Topic: Education
• Subtopic: Inclusive Education

`This deceptively little book contains more truth and provides more insight into what it is like to have Asperger?s Syndrome than many a weighty tome on the subject. It offers a view from the inside, but it is not yet another autobiography. Admirably and refreshingly, the author has refrained from giving an account solely based on her own experiences. Instead she sets out observations from 25 different suffers, giving often astonishing and sometimes harrowing glimpses of what actually happens to a child with Asperger?s Syndrome in the classroom, in the playground, in the lunch queue and at home? - The Journal of Child Psychology and Psychiatry

This award-winning book illuminates what it means to be a person who has Aspergers Syndrome by providing a window into a unique and particular world. Drawing on her own experience of schooling, and that of a network of friends and correspondents who share her way of thinking and responding, Clare Sainsbury reminds us of the potential for harm which education holds for those who do not fit.

This book holds insights that take us beyond the standard guidance on how to manage autistic spectrum disorder. It challenges the way we might handle obsessional behaviour.

It invites us to celebrate the pure passion of the intellect, which such obsessions can represent, and to recognise the delight which can be experienced by children who love to collect. It reminds us that many of the autistic mannerisms we might try to suppress actually help the child to think.

This revised edition includes an additional introduction and extensive summary of research in the field of Asperger?s Syndrome, both by Tony Attwood.

1
Introduction

 

Clare continues to be rather a loner and becomes noticeably upset if other children try to include her in their games or activities … She is not very helpful in the classroom and can be very obstinate … She finds it hard to follow general instructions and quickly panics. She is very self-centred … inclined to daydream … has difficulty working with others … often sullen and determined not to co-operate. She dislikes being given a direct order … Clare’s difficulty to get on with people is impeding her learning as she cuts herself off and does not listen attentively … tantrums … After a determined start at the beginning of the term to play with the other children, she has now relapsed and is more alone than ever.

(extracts from my primary school reports)

Here is one of my most vivid memories of school: I am standing in a corner of the playground as usual, as far away as possible from people who might bump into me or shout, gazing into the sky and absorbed in my own thoughts. I am eight or nine years old and have begun to realize that I am different in some nameless but all-pervasive way.

I don’t understand the children around me. They frighten and confuse me. They don’t want to talk about things that are interesting. I used to think that they were silly, but now I am beginning to understand that I am the one who is all wrong. I try so hard to do what I am told, but just when I think I am being most helpful and good, the teachers tell me off and I don’t know why. It’s as if everybody is playing some complicated game and I am the only one who hasn’t been told the rules. But no-one will admit that it’s a game or that there are rules, let alone explain them to me. Maybe it’s all a joke being played on me; I know about “jokes”. I would be happy if they left me alone to think my thoughts, but they won’t.

I think that I might be an alien who has been put on this planet by mistake; I hope that this is so, because this means that there might be other people out there in the universe like me. I dream that one day a spaceship will fall from the sky onto the tarmac in front of me, and the people who step out of the spaceship will tell me, “It’s all been a dreadful mistake. You were never meant to be here. We are your people and now we’ve come to take you home.”

In the next few years, I would work out that the spaceship was never going to come and rescue me, but it wasn’t until I was twenty that I finally found a name for my differences, when I was diagnosed with Asperger’s syndrome, a mild form of autism. Five years later, looking back at my schooldays, I feel regret and anger for the needless pain I went through and for the energy that I and my teachers wasted pointlessly. If the right people had only been given the right information, more than a decade of my life might have gone very differently. Talking to other adults with Asperger’s syndrome, I found that the same regret and anger were almost universal (in fact, my school experiences were far better than those of many others: I was academically able in many areas, had several good and sympathetic teachers, and the teasing and bullying that I experienced was comparatively mild).

It would be nice to think that things had changed since my school days, but, in discussions, teenagers still at school today described the same problems and issues as people in their thirties and forties (many of these school problems, incidentally, were described in Hans Asperger’s original paper in 1944). In the ’80s and ’90s, awareness of and research into Asperger’s syndrome increased dramatically, but it is still taking considerable time for this new knowledge to reach teachers and others “on the ground”.

Consequently, people with Asperger’s syndrome are often passionate about sharing our knowledge of and insights into Asperger’s syndrome, in the hope that the next generation of children with Asperger’s may not have to go through what we did. We don’t need ramps or expensive equipment to make a difference for us; all we need is understanding. As one young man with Asperger’s, Simon, commented,“I think the main problem with AS is simply a lack of awareness.”

In recent years, several excellent guides to Asperger’s syndrome by professionals have been published, including a couple aimed specifically at teachers (I’ve included a list of some of the best of these in the appendices). It would be redundant to duplicate this material, and in any case, I am neither a researcher (although I read as widely as I can in the research literature on Asperger’s syndrome and autism), nor a teacher (although I work part-time at a school for children with autism and Asperger’s syndrome, the particular children I work with are severely disabled, sometimes non-verbal, and so face very different educational challenges). My only qualifications for writing this book are that I have Asperger’s syndrome and was once a schoolchild.

However, many teachers and other professionals who work with children and young people with Asperger’s have said to me that, while the practical advice and information provided by books written by professionals are indispensable, they still find it very hard to understand “what goes on in the head” of many of their students – what’s it’s actually like to be a schoolchild with Asperger’s syndrome. They report that autobiographical accounts by people with Asperger’s and other forms of autism have been uniquely helpful, and have enabled them to empathise with their students to a much greater degree, but obviously any autobiography can only describe the experiences of one individual, who may be more or less typical, and will cover many aspects of life other than school.

This book is not intended to replace but to complement those written by professionals and by other people with Asperger’s. I can’t advise on what teaching strategies are most effective with students with Asperger’s syndrome or provide practical tips. I can only describe what I and others experienced as children. I will try to communicate something of the subjective experience of school for children with Asperger’s syndrome, in the hope that this will equip teachers to approach such students with greater understanding. In keeping with this goal, I have generally avoided quoting from texts by professionals in favour of first-person quotes from people with Asperger’s syndrome. I have occasionally quoted from professionals either to back up the personal impressions of people with Asperger’s with research or when a comment has seemed particularly insightful. However, I have read extensively among accounts by professionals, parents and teachers in attempting to understand how they perceive us and why they sometimes react to us in the ways that they do.

In the following chapter, I have given a brief “beginner’s guide to Asperger’s syndrome”, summarizing basic information on the features of the syndrome, before going on to examine what this means “from the inside”, first in terms of overall perceptions of education and its goals, and then in practical terms, examining the experiences of schoolchildren with Asperger’s not only in the classroom but also in areas of school which are often ignored or not considered to be of educational interest, but which often loomed as large in people’s memories as anything that happened in the classroom. Inevitably, the division into chapters is somewhat arbitrary – many problems spill over from the classroom to the corridors or vice versa. I have devoted separate chapters to the topics of “challenging behaviour”, preparing for the world outside school, and finally to one issue rarely addressed by professional textbooks but of crucial importance to people with Asperger’s syndrome: sharing knowledge about Asperger’s syndrome with the pupil themselves.

In writing this book, I have drawn not only on my own memories but also on the accounts, experiences, and opinions volunteered by many other people with Asperger’s (including people from the UK, the USA, New Zealand, Sweden, Canada and the Netherlands), who generously granted their permission for me to quote them and encouraged me to pursue this project. I hope that I have managed to convey something of the diversity of people with Asperger’s syndrome, as well as the things we have in common.

For far too many people with Asperger’s, as Jack commented, “… all of school was either terrifying or totally boring …”. Hopefully this book may do a little to change things.

A note on terminology

Like many other people with autistic spectrum conditions (see Sinclair 1999), I object to the insistence on using “people-first” language by referring to “people with autism” instead of “autistic people”. We are not people who “just happen to have” autism; it is not an appendage that can be separated from who we are as people, nor is it something shameful that has to be reduced to a subclause. As Sinclair notes, “It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.”

A note on quotations

All quotations for which I have not cited a published source are from people with Asperger’s syndrome. Some of the names given are real names, while others are pseudonyms; I have respected individual preferences about this wherever possible.

2
What is Asperger’s Syndrome?

For all of my life, I was the ‘different’ kid …

(Fred)

Asperger’s syndrome (AS) is generally considered to be a mild form of autism, a developmental disorder of neurological origin which affects very approximately at least one in every thousand people (estimates vary wildly, depending on how broad the definition used is, and its actual prevalence is made even harder to estimate since, until very recently, many or most people with Asperger’s went undiagnosed) and which affects communication and social interaction.

On the basis of current research, it appears that autism can have many different causes, such as prenatal rubella or Fragile-X syndrome, but that there is a significant genetic factor involved in many cases (it has been noted by many researchers, from Hans Asperger on, that some parents or relatives of children with Asperger’s syndrome will display traits of the syndrome themselves). Although autism was once believed by some to be a form of emotional disturbance resulting from bad parenting, this theory has been completely discredited, and for the last three decades, all serious researchers have agreed that autism is wholly biological in nature.

Asperger’s Syndrome
High Functioning Autism
Pervasive Development Disorder/not otherwise specified
Semantic-Pragmatic Disorder…
Abbreviations: AS; HFA; PDD – NOS; SPD

Many autistic people also have some degree of learning difficulties (formerly known as “mental handicap”), but autism can also co-exist with average or higher-than-average intelligence. Autistic people who have relatively good intellectual and verbal abilities are often referred to as having “high-functioning autism” (HFA). Recently, many researchers have suggested that it is most accurate to see the category of autism as a continuum – the “autistic spectrum” – ranging from the most severely disabled people, who may never develop speech, to the most high-functioning.

The group of children first described by Hans Asperger in 1944 generally displayed much better language and communication skills than those described in the same year by Leo Kanner, the discoverer of autism. Asperger’s paper was largely neglected until the late 70s and early 80s, when the label “Asperger’s syndrome” was revived by researchers such as Lorna Wing (1981) as a way of describing more able and verbal autistic spectrum children. The relationship between Asperger’s syndrome and high-functioning autism is still subject to debate (see Schopler 1998 for an exhaustive review), although it is agreed that Asperger’s syndrome is clearly part of the autistic spectrum. Many researchers believe that there is no meaningful distinction between the two groups.

Currently, the official diagnostic criteria most often used, those of DSM-IV (the fourth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders 1994) distinguish Asperger’s syndrome from autism on the basis of the absence of general delay in language and cognitive skills.

However, it is unclear whether this distinction really identifies two separate conditions, or whether it would be more useful to speak of autism with and without language delay or learning difficulties. At present, people of average or above average IQ with an autistic spectrum condition tend to receive the label of “high-functioning autism” if they have had a history of language delay as children, and “Asperger’s syndrome” if not (even though they may, like me, have had language development which, while not delayed, was extremely odd). Many children show some language delay in early childhood while going on to fit Asperger’s description with great exactness. As Peeters and Gillberg (1999, p.30) argue,“it is so rare for an individual on the autistic spectrum to have perfectly normal language development, that the inclusion of ‘normal language development’ as a criterion for diagnosis does not make clinical sense”. They point out that on these grounds, many of Asperger’s original cases would not have met current diagnostic criteria for Asperger’s syndrome. Once initial language delay has been overcome, it does not seem possible to find further distinctions between the two groups. This is not to imply homogeneity: people at the mild/high-functioning end of the autistic spectrum are an extremely diverse bunch and the study of various subgroups may well be a productive area for future research. Some of the people I have quoted define themselves as having “high-functioning autism” as distinct from “Asperger’s syndrome”. But the many differences between us do not seem to be adequately pinned down by a simple distinction between those with and those without histories of language delay.

DSM-IV:
299.80 Asperger’s Disorder

(A) Qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity.

(B) Restricted repetitive and stereotyped patterns of behavior, interests and activities as manifested by at least one of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, non-functional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole-body movements)
4. persistent preoccupation with parts of objects.

(C) The disturbance causes clinically significant impairment in social, occupa-tional or other important areas of functioning.

(D) There is no clinically significant general delay in language (e.g., singlewords used by age 2 years, communicative phrases used by age 3 years).

(E) There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(F) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

“Pervasive developmental disorder not otherwise specified” (PDD-NOS) is a term sometimes used (particularly in the United States) for people who seem to be on the autistic spectrum, but who do not, in the opinion of the clinician, meet all the diagnostic criteria for a formal diagnosis of autism or AS (before the diagnosis of PDD-NOS was introduced, many of these people were given even vaguer diagnoses such as “autistic tendencies” or “autistic-like”). Many people feel that PDD is an unhelpful diagnosis and that “autistic spectrum disorder” might be more useful.

I was born and diagnosed at around 3 with around half the symptoms of autism. My Montessori school teacher noticed that I wasn’t making eye contact with the rest of the children and that I didn’t play with them, just isolated myself ‘in my own little world’. At first the professionals thought that I might have ‘full-blown’ autism, however at one of my evaluations I was a wee bit too social to fit that diagnostic category. So … what do professionals do when they want to say ‘I don’t know exactly what’s going on here?’ but don’t want to sacrifice their professional pride? They make up a fancy name like ‘development deviations’ or ‘neurological developmental disorder – mixed, diagnosis deferred’ or more recently, PDD-NOS, ‘pervasive developmental disorder – not otherwise specified’ … not fitting anyone’s categories or expectations is the story of my life. (Karen)

“Semantic-pragmatic disorder” (SPD) is another much debated term, with many autism researchers sugg...