A Beginner's Guide to Autism Spectrum Disorders

Essential Information for Parents and Professionals

Paul G. Taylor

• Publisher: Jessica Kingsley Publishers
• Year: 2011
• Print ISBN: 9781849052337
• eBook ISBN: 9780857004772
• Topic: Psychology
• Subtopic: Autism Spectrum Disorders
• Index: Psychology

What is Autism Spectrum Disorder? What does a diagnosis of ASD mean for the child and for you? How can you learn to fully understand behaviours common to ASD and help the child grow and prosper?

This short introduction is an ideal starting point for anyone encountering ASD for the first time. The book covers all of the essential information needed to ground an understanding of the condition and offers effective practical strategies for assisting children who are living with ASD. It advocates putting aside conventional thinking and considering things from a different perspective – the way that the child with ASD sees the world.

This concise and straight-talking guide to ASD will ensure parents, carers, teachers and other professionals feel confident, informed and able to cope with the road ahead.

Part I

ASD – The Simple Facts

1

Nuts and Bolts

Autism

Autistic Spectrum Disorder

Borderline Autism

Autism Spectrum Disorder

Pervasive Developmental Disorder Not Otherwise Specified

High-functioning Autism

Asperger’s

PDD-NOS

Autistic

Asperger Syndrome

Pervasive Developmental Disorder

PDD

Aspie

ASD

Autistic Tendencies

These are some of the terms you might hear used to describe the kind of person this book is about. They are often used indiscriminately and interchangeably.

Many of these terms may be used to describe the same child. This can create confusion, undermine confidence in the diagnosis, get in the way of good communication and make effective planning more difficult.

This confusion arises because of a lack of agreement across the world on what name or names to use. The World Health Organization has tried over the years to come up with a system of classification to help us get to a common agreement on the correct name to call just about any medical condition. This is called the International Classification of Diseases (ICD), which is now in its tenth version called, not unsurprisingly, the ICD-10.

The American Psychiatric Association has been doing the same thing for conditions which affect how the brain thinks. Their classification system is published in the Diagnostic and Statistical Manual of (DSM) which is currently in its fourth edition and is called the DSM-IV.

The DSM-IV has a group of conditions it calls the pervasive developmental disorders (PDD). This group includes

• autistic disorder [more commonly referred to as autism spectrum disorder/ASD]

• Asperger’s disorder [more commonly referred to as Asperger syndrome/AS]

• pervasive developmental disorder not otherwise specified (PDD-NOS).

There are also two other very rare disorders we don’t need to worry about in this book (these are Rett’s disorder and childhood disintegrative disorder, just so you know). Just where any one of the three main disorders begins or ends can be a matter of personal judgement and preference. This is where confusion can arise, because one person’s AS can be someone else’s PDD-NOS.

Most people have given up on this and now call everything in this group autism, or autism spectrum disorder or autistic spectrum disorder. For these people the DSM-IV has become an irrelevance.

The American Psychiatric Association has signalled that in the next edition of the DSM they will do away with the three major subgroups (ASD, AS and PDD-NOS). They are proposing that everything will be called autism spectrum disorder. In addition, the things that are necessary for the diagnosis may be simplified. This is not yet set in stone and many people are challenging this new proposal, especially some vocal adults who are proud of their diagnosis of Asperger syndrome.

However, this new approach as to how to call a spade a spade is becoming firmly entrenched across the world, so for this book I have chosen to go with the flow and call everything autism spectrum disorder (ASD).

We will nevertheless still use the current three DSM-IV standards for diagnosis because these really do help the understanding about what is special in people who have ASD. If you or the person who is the reason you are reading this book has been diagnosed with any of the terms at the beginning of this chapter, then this book is specifically aimed to help you. The term autism spectrum disorder sits perfectly with any of the other terms and sooner or later everything will fall into line.

2

Diagnosis

The autism spectrum disorders

In this group of disorders, which are the focus of this book, the DSM-IV specifies impairments in three specific areas of behaviour which have to be present in order to make a diagnosis. These three areas are:

Impairment of social interaction

• Difficulty in understanding the non-verbal aspects of social interaction, such as being able to understand facial expressions, turn taking in conversation and understanding what is going on in the other person’s mind.

• Difficulty in making friends and interacting with people of the same age and preferring to associate with younger or older people.

• Not seeking to share experiences, objects, activities or space.

• Difficulty in sharing social and emotional interactions with other people.

Impairment of communication

• Absence or significant restriction of spoken language.

• Difficulty in engaging in conversation with other people by listening to and responding to what the other person is saying.

• Using stereotyped/repetitive/idiosyncratic language.

• Having no interest in participating in spontaneous make-believe play with other people of the same age.

Impairment of activity and interests

• Encompassing and restricting preoccupation with a small range of ideas or things or topics.

• Obsession with ritual, order and repetitive behaviours.

• Showing repetitive motor mannerisms such as hand flapping, singing or making particular noises.

• Preoccupation with parts of objects which interferes with understanding how the whole object works.

According to the latest research, published in 2010, about one person in every hundred people may have autism spectrum disorder (ASD). We are talking about a sizeable segment of the population here. In order to ensure that as parents and professionals we do the best we can in working with someone who has ASD, many of us are going to have to do a whole lot of learning. You will find that this effort pays off when you see the difference you can make for the person who needs our understanding.

Fine wine

In some respects ASD is like fine wine.

Let’s try to classify wine. We might say there are three broad types of wine – white, red and rosé.

Within each of these three broad groups there may be many different grape varieties, such as chardonnay, sauvignon blanc, riesling, pinot gris, cabernet sauvignon, zinfandel, pinot noir, and so on.

Or perhaps we can divide wine by region of origin starting with the country, then region, then the town or village and then the specific vineyard and even the specific row of plants.

Then there is vintage – wine from one year in the same block of the same vineyard might be quite different from the previous or the following year.

Then there is the style of wine the winemaker tries to achieve using his experience and his art.

Then there is the effect of cellaring and handling of the wine on the development of its character.

And finally there is the context in which the wine is consumed – temperature, accompanying food, and so on.

So wine can be anything from a generic type of grape beverage to something unique, specific and unreproducible.

And so it is with ASD. We may generalize on many features which are shared by people with ASD but in reality there are no two people with ASD who are the same or who share exactly the same presentation.

So if you know somebody with ASD you will not find a complete and accurate description of him in this book, or anywhere else for that matter. The best you can hope for is a series of general statements which may or may not be relevant to the person you have in mind. Exceptions to the rule are frequent and do not necessarily invalidate the diagnosis.

3

Autism Spectrum Disorders are Hard-wired

Now we are beginning to get down to the nitty gritty of ASD.

Nobody has as yet discovered precisely what causes ASD. There have been many theories proposed over the years but none has ever been proved or really gained acceptance. Some theories have led parents to spend vast amounts of emotional energy and money in the understandable hope that something miraculous might be achieved for their affected child.

ASDs tend to run in families. The pattern of occurrence within families is unpredictable, varied and patchy, which suggests that ASD is not a disorder caused by a single gene. The way in which ASD presents itself is so varied as to strongly suggest that there are several genes involved. Furthermore it is possible that something in the very early developmental stages of somebody with ASD may ‘switch on’ a gene or series of genes which then leads to ASD emerging. We are probably looking at a large number of distinct genetic situations which just happen to have the same main features. So we lump them together under the same name.

In practice this is OK. The general assumptions we make about ASD tend to lead to interventions that work in most situations.

To recap the previous chapter, ASD is a hard-wired difference in thinking patterns that some people are born with. As we have seen, in ASD there are differences in communication, differences in social interaction, and differences in range and intensity of interests. The degree of difference varies from severe at one end to mild and subtle at the other. In the old classification, severe ASD was and still is called autistic spectrum disorder (ASD). A milder form of ASD results in a specific pattern of differences often known as Asperger syndrome (AS). Other people with ASD fit into the mild end of the range of differences, which used to be called pervasive developmental disorder not otherwise specified, usually abbreviated to PDD-NOS.

Children, young people and adults with ASD can be endlessly fascinating. They can also be endlessly challenging. Their behaviour can be very hard to understand and to cope with. Using conventional ways of trying to understand and control behaviour is usually unsuccessful and frustrating.

Why is this?

Apple computers run OS and PCs run Windows

Imagine that instead of being human beings we were all computers. I would guess that most of you would immediately think of yourself as a typical personal computer running Microsoft Windows. Some of you might choose to be an Apple computer. Most personal computers in the world are based on Windows operating systems, while a small percentage are based on Apple OS operating systems.

Those of you who choose to be a Windows-based computer can run any program designed for the Windows operating system. You can take a program from one Windows computer and run it on another Windows computer without any problem. All you Windows computers share the same operating system and you all ‘think’ in the same way. You can communicate with each other because you are designed to ‘think’ in the same way.

Those of you who choose to use Apple OS are in the same situation as far as running and communicating with each other goes. Any program designed to run on Apple OS will run on any Apple computer. You Apple computers can communicate and share with each other because you are also designed to ‘think’ the same way.

There is only one problem – if you are a Windows computer you cannot understand Apple programs and if you are an Apple computer you cannot understand Windows programs. Apple computers are ‘hard-wired’ differently to Windows computers.

Now think of ASD as being a hard-wired difference in how brain circuits are organized. Think of people with ASD as being Apple computers trying to exist in a world of Windows-based PC computers. Both Apple computers and Windows computers are very good at doing what they were built for. They just go about it differently.

If you try to run programs written for Windows computers on Apple computers nothing happens. The screen stays blank or an error message pops up. Or perhaps the Apple computer will crash. It doesn’t matter how often you try to r...

Table of contents

• Cover
• Title
• Contents
• Acknowledgements
• Introduction
• Part I ASD – The Simple Facts
• Part II ASD – What Can We Do About It?