Introduction from The Hidden Diffability: Discovering Aspergers
Chapter 1Introduction
If you’ve picked up this book, chances are you or someone you know has Asperger Syndrome. It might be your child, your spouse, grandchild, niece or nephew who has received or is awaiting the result of one of the fastest growing psychiatric diagnosis of our time.[i] From prevalence rates of 36 in 10,000 people in a 1993 study, rates of 1 in 100 are now thought to be more accurate.[ii]
You might be a teacher just informed that your class is to have a child with additional needs, or perhaps you're a health professional wanting a better understanding of how your clients view their world and your place within it.
Regardless of your background or connection with Asperger Syndrome, it is my sincere hope this book edifies your understanding of how this different way of thinking affects all aspects of a person’s life.
The Hidden Diffability is not intended to replace your reading of texts by health professionals working in the autism spectrum field. However, I hope you read this in tandem, while you are still struggling to take in all the terminology, and wondering how on earth you’ll manage. (I’ve included a detailed glossary to help with the new language you’ll be acquiring.)
This book is the culmination of years of research and hundreds of conversations. Here you can read how people with varying backgrounds and resources make their lives work with Asperger Syndrome. It is the book I wish I’d found when we first began our journey.
What is Asperger Syndrome, Autism, and Autism Spectrum Disorder?
It can be easier to start with what Asperger Syndrome is not. It is not a disease, you can’t catch it, and it won’t kill you. If I use formal psychiatric terms such as ‘a lifelong neurological disorder affecting communication, social interaction and repetitive behaviours’, most people are still frowning at me when I finish that sentence.
I prefer to describe Aspergers as a different wiring of the brain, making the acquisition of some skills much harder than others. A person with Asperger Syndrome, or Aspergers, is not defective. They will have gifts among their social glitches. Delay in acquiring skills does not mean they can’t be learnt; rather, the person learns in a different way. As Brisbane-based clinical psychologist Dr Tony Attwood explains, ‘the simplest way to understand Asperger’s syndrome is to think of it as describing someone who perceives and thinks about the world differently to other people.’[iii]
Asperger Syndrome is part of the autism spectrum. It is named for Dr Hans Asperger (1906-1980), a Viennese paediatrician whose 1944 doctoral thesis first described the characteristics of a small group of children, using the term ‘autistic psychopathy’ (meaning personality disorder). He devoted the rest of his career to working with autistic children, and developed an educational program using speech therapy, drama and physical education. He wrote of the disorder as a lifelong personality type. Published in German during World War II, Dr Asperger’s work remained largely unknown outside Austria during his lifetime.
The work of another Austrian, child psychiatrist Leo Kanner, who migrated to the United States of America in 1924, became much more widely known with the English publication of his 1943 paper Autistic Disturbances of Affective Contact.
Unknown to each other, both Kanner and Asperger had described children with poor social skills, limited conversational ability and intense interests. However Kanner’s description was of more severely affected children—the silent, aloof child with intellectual disability—and as his work gained international recognition, Kanner’s or ‘classic’ autism became the dominant view.
After studying both Asperger’s and Kanner’s work, and from her own clinical studies, in 1981 English psychiatrist Lorna Wing published an academic paper proposing the concept of an autism spectrum, with a new diagnostic category of Asperger’s Syndrome.[iv] This led to a small international conference on Aspergers in London in 1988, and the publication of Professor Christopher Gillberg’s diagnostic criteria for Aspergers.[v]
In 1992 Asperger Syndrome was added to the 10th edition of the World Health Organisation’s diagnostic manual, International Classification of Diseases (ICD-10). In 1994 it was added to the fourth edition of the American Diagnostic and Statistical Manual of Mental Disorders (DSM IV) as Asperger's Disorder.
The term autism spectrum, first used by Lorna Wing in 1981, is intended to cater for the wide range in autistic behaviours and characteristics. At one end of the spectrum are people with low-functioning autism, who may be unable to speak or take care of their own physical needs, such as the speechless child who rocks incessantly in the corner. Without speech they cannot complete an IQ assessment, and so will be described as having an intellectual disability.
At the other end of the spectrum are highly intelligent individuals with quirky social behaviour. They may be described as eccentric or odd, and have encyclopaedic knowledge about their special interest. Depending on how old they were when diagnosed, and whether their parents reported a language delay, they may be diagnosed with high-functioning autism or Asperger Syndrome.
Some experts say that while the terms are often used interchangeably, theyare slightly different. Historically, the term high-functioning autism was used when the individual had a language delay—still not speaking in short phrases by the age of two—and is often diagnosed before the age of four. Asperger Syndrome has been used when there was no reported language delay, and is usually diagnosed between the ages of 8–11.
However, the majority of scientific research into the differences between high-functioning autism and Asperger Syndrome has failed to find empirical evidence of reliable criteria to differentiate the two. For this reason the DSM 5 will revert to Lorna Wing’s original definition of a spectrum, with a rating scale that more closely follows the confirmed evidence.
The Appendix contains a number of diagnostic criteria schedules, including Gillberg’s criteria for Asperger’s Disorder, Tony Attwood’s profile of abilities, and the DSM IV and DSM 5 definitions.
A note on sex differences in the rates of diagnosis:
Traditionally Aspergers was thought to affect many more males than females. A ratio of 1 girl to 10 boys was thought to be correct some time ago, but now 1 girl to every 4 boys is more commonly suggested. Dr Judith Gould, the director of the National Autistic Society’s Lorna Wing Centre, in Britain, believes the true ratio to be closer to 1 girl for every 2.5 boys. ‘Girls are not being picked up because there is still a stereotyped view of what Asperger's is, which is based entirely on how boys present with the condition,’ she said.[vii] At a 2012 Melbourne autism seminar Dr Tony Attwood said he believed a ratio of 1 girl for every 2 boys would eventually be proved.
A Note on Language:
You may come across the terms disorder, disease and disability frequently when reading about the autism spectrum. I prefer to use the terms autism spectrum condition, Asperger Syndrome, or simply Aspergers, which removes the hurtful implication of defectiveness. After all, as a member of the wrongplanet.com community asserts, being normal is vastly overrated.
All terms and acronyms used throughout the book are explained in more detail in the Glossary.
In the following chapter you will learn more about the 15 families who were interviewed for this book.
[i] Osborne L. (2002) American Normal: The Hidden World of Asperger's Syndrome, New York, NY: Copernicus Books.
[ii] National Autistic Society UK at www.autism.org.uk.
[iii] Attwood, T. (2008) The Complete Guide to Asperger’s Syndrome, London, Jessica Kingsley Publishing, p. 12.
[iv] Attwood T. (2008) The Complete Guide to Asperger’s Syndrome, London, Jessica Kingsley Publishing, pp. 12–38.
[v] Gillberg and Gillberg, (1989) as cited in Attwood, T. (1998) Asperger’s Syndrome: A Guide for Parents and Professionals, London, Jessica Kingsley Publishers.
[vi] American Psychiatric Association at www.dsm5.org.
[vii] Hill, A. ‘Doctors are “failing to spot Asperger’s in girls” ', The Observer, 12 April 2009, p. 8, viewed at www.guardian.co.uk/lifeandstyle/2009/apr/12/autism-aspergers-girls.