The Jumbled Jigsaw

An Insider's Approach to the Treatment of Autistic Spectrum `Fruit Salads'

Donna Williams

• Publisher: Jessica Kingsley Publishers
• Year: 2005
• Print ISBN: 9781843102816
• eBook ISBN: 9781846424618
• Topic: Education
• Subtopic: Inclusive Education

The Jumbled Jigsaw exposes autism spectrum disorders (ASDs) not as single entities but as a combination of a whole range of often untreated, sometimes easily treatable, underlying conditions. Exploring everything from mood, anxiety, obsessive-compulsive and tic disorders to information processing and sensory perceptual difficulties, including dependency issues, identity problems and much more, Donna demonstrates how a number of such conditions can combine to form a 'cluster condition' and underpin the label 'autism spectrum disorder'.

Donna Williams encourages and empowers families to look at what they can do to change their child's environment to address anxiety, overload and other issues. She also gives carers the necessary information to navigate the booming autism marketplace and demand the right tools for the job. The author also challenges professionals to adopt a multi-disciplinary approach to identifying and treating the cluster conditions that make up an autism spectrum diagnosis, and to improve service delivery to those in need.

The Jumbled Jigsaw is a call to modern society to take responsibility and accept diversity. It is written in a very human and user-friendly way for parents and for Auties and Aspies themselves, but it is also aimed at carers, professionals, policy-makers and service providers.

PART 1

Getting Oriented

Introduction

OK, so you landed in the world of those who are developmentally challenged and you’re looking for an instruction manual. Most likely you’ll get, instead, a label: ‘Autism’ or ‘Asperger’s syndrome’ or ‘PDDNOS’ (pervasive developmental disorder not otherwise specified) or some other umbrella term, as though you had one fruit and this type of ‘fruit’ will always taste the same if it’s got the same label.

And maybe you think you all got some kind of apple, like one of you got the Autism apple we might think of as a Golden Delicious. And another one of you got the Asperger’s apple we might think of as maybe a Granny Smith. And one of you got one of those ‘PDDNOS’ type apples we might think of as a Pink Lady.

But what if these weren’t single definable variations on one fruit? In fact, what if each were a strange fruit indeed? And the more you get used to it, the more you might find it may have many different flavours and sometimes it is not one fruit at all but a well-disguised blend of fruit salad, and you confused it for a mere apple! What’s more, what if the combined ingredients in each of these fruit salads and the amounts of each in each concoction differed slightly in each case? One piece of fruit may be that of information-processing issues, another of sensory-perceptual issues, another of communication issues, another of anxiety disorders, another of mood disorders, another of compulsive disorders and another of sense of self, environmental dynamics, identity and personality issues – and that’s just the fruit on top.

Some of you may find that where you thought you had only an ‘apple’, you will find when you look closer that you also have ‘grapes’. Others will not, but might have ‘plums’ instead. Some will have two types of ‘berries’ in there and some will have more than one type of ‘banana’.

And if you don’t like fruit salad, then think in terms of pizza. A pizza is not merely the base. It has lots of toppings involved in what becomes the final pizza experience. So whether you think fruit salad, pizza, stew or trifle, this book is about ingredients – identifying them, giving you the tour and pointing out what this might mean for working most constructively with people challenged by developmental conditions. In the end we may even find that Autism, Asperger’s, PDD (pervasive developmental disorder), ADHD (attention deficit hyperactivity disorder), or any other current label for an Autism spectrum condition, is actually a construction, a myth. Oh yes, a condition does exist, but it may not be one condition at all, but a cluster of them – a cluster condition.

This book is all about naming what’s in that cluster, that recipe that comes to be labelled a ‘developmental disability’. It’s kind of like buying a product in the supermarket labelled ‘Fruit Salad’, but having the contents listed on the side so you know that ‘Fruit Salad’ might appear to be one thing but it’s made up of lots of different things put together. Then, because we know what makes up the fruit salad, what the contents are, then if those contents are causing us advantages or disadvantages, we have a better idea which piece is an issue rather than blaming the entire fruit salad. We might even find that particular fruit salads suit particular tastes and occasions or are best experienced in particular atmospheres where the best qualities of the ingredients come to the fore, a bit like how people think white wine tastes best when it’s served with fish, and red wine with meats, and olives with cheese.

When we know what something’s actually made up of, then it’s like being given an instruction manual, we know how best to work with each of the different parts. But before we look at what’s inside, let’s look briefly at what people see from the outside.

Looking at developmental challenges from the outside

The most important issues are:

•interaction (how people relate)

•self-help (looking after yourself and getting what you need)

•communication (‘blah blah’ – how chat seems to an Autistic person – and sharing who you are through words)

•learning (taking on new experiences and other people’s ideas of important information)

•behaviour (all the stuff that hangs out in what you do)

•imagination (the storylines, movies and mental juggling that go on in your head, or don’t)

•emotion (intangible, physical feelings that affect the body)

•sensory perception (how we make sense of what we see, hear, smell, taste, touch; movement through space, muscle feedback, etc.).

Interaction means how we relate to each other. For most developmentally typical people the desire for good interaction is as simple as having their child open to their attempts to join in, to do as they are told, to accept or seek comforting or to respond when they draw attention to something. Instead, the reality is that it can be about living with a child who is full-on, demanding, constantly seeking comfort and demanding their attention; or the opposite – a child who is passive, aloof, independent, unable to conform or to cope with involvement that’s started by others.

Self-help skills are about the ability to learn to do things for oneself. This can be as simple as getting a glass of water, taking off a jumper, being toilet trained or asking for help. Because children are often expected to let others care for them, problems with self-help usually don’t become too apparent until around the age of two or three. Then a parent may despair in having a puppet-like child who progressively appears unable to dress, feed or toilet him or herself, in some cases even unmotivated to crawl or walk. For others, they may have a child who insists on dressing in the same thing every day, will not change clothes, wears them inside-out or back to front, eats only certain (often problem) foods, excessively overeats, eats non-food objects, drinks excessively or not at all, insists on bizarre toileting routines with tantrums at the slightest redirection of this fierce ‘independence’ and rejects all external attempts to care, comfort or direct.

Communication means sharing ideas and experiences. For some families, the communication issue comes down to despair over never having heard a child’s voice. For others it’s about the child never shutting up. For some it’s about distant, formal language. For others it’s about stuffy, pedantic, seemingly self-interested or obsessive language. It might also be about involuntary sounds, words or phrases said over and over till it drives everyone mad, or communication which doesn’t make meaningful sense to most people, or something as simple as having no social judgement in choosing what to say or no apparent ability to keep track of the effect of what is said on other people.

Learning difficulties can mean having a child who doesn’t initiate or seems unmotivated most of the time. For others, it’s about a highly distracted, impulsive, compulsive, unpredictable or easily distressed child whose challenges interfere with learning. For yet others, it’s about a child who either simply doesn’t get what meaning is all about or tires of it easily; or the opposite – a child who understands interpretive meaning but appears unable to relate to emotional content or the general theme or feel of what’s being learned.

Behaviour challenges can take many forms. Some carers struggle with extreme passivity, rigidity, phobia, or sensitivity as the greatest behavioural challenge presented by their child. Other carers have wild, seemingly untameable, fearless, compulsive, impulsive, sometimes even explosive wild-children with all that that can entail in terms of energy and the judgements of others. Some carers have unpredictable children who swing between both of these extremes.

Imagination is one of the things once said to be lacking in those with ‘developmental disabilities’, though people in this group continue to demonstrate that their form of imagination may not so much be missing as somewhat different.

Emotion is one of the ways we share experiences. The perception or processed experience of emotion can be seemingly absent, incomprehensible, out of control or wildly hypersensitive. Those who live with this on a chronic level are going to be at risk of developing a disturbed relationship to the whole sphere of the emotional self, the sharing of it with others or even in seeking to understand or develop it oneself. In other words, just as chronic pain may lead people to detach from their sense of the physical or struggle to relate to those who don’t have these issues, I believe that chronic severe challenges in the emotions department can lead to a similar disturbance in relation to one’s emotional self, the emotional selfhood of others or the sharing of those two worlds.

Sensory perception is about the way we get information from our senses; sight, hearing, smell, taste, touch as well as our sense of body in space. When these are not integrated or are wildly fluctuating, this makes for a rather different experienced reality to the majority of people.

What is an Autism spectrum condition?

The conventional definition

Before dissecting the label of Autism spectrum disorder in a way it may never be seen in its usual conventional terms again, let’s take a little wander into the conventional world of Autism professionals and how they have broadly defined Autism.

Most professionals define Autism by external criteria such as the ‘triad of impairments’ (in social interaction, social communication and social imagination), as set out by the National Autistic Society in their leaflet What is Autism?:

People with Autism generally experience three main areas of difficulty; these are known as the triad of impairments.

•Social interaction (difficulty with social relationships, for example appearing aloof and indifferent to other people).

•Social communication (difficulty with verbal and non-verbal communication, for example not fully understanding the meaning of common gestures, facial expression or tone of voice).

•Imagination (difficulty in the development of interpersonal play and imagination, for example having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively).

In addition to this triad, repetitive behaviour patients and resistance to change in routine are often characteristic.

The problem with Autism stereotypes

The following characteristic behaviours were mentioned on the Leicestershire County Council Specialist Teaching service website (2003) as being associated with Autism:

•A tendency not to seek out the company of others.

•A tendency to stick to well-tried routines and avoid change.

•A tendency to have a narrow range of interests, often becoming obsessed with a particular activity or subject.

•A tendency to develop irrational fears and anxieties.

•A tendency not to develop a sense of danger.

•A tendency to demonstrate bizarre behaviours and mannerisms.

•A tendency to copy speech parrot fashion.

•Isolated areas of ability.

The problem with such a list is that the features of each of these areas can be caused by very different underlying factors, so in fact there is no one thing called Autism.

The stereotypes associated with Autism are today significantly broader than they were when I was born in 1963. The concept of Autism is being refined all the time to embrace a much broader range of personalities and social backgrounds than in earlier times. With this broadening of the concept of Autism, the ‘Autie’ population multiplied dramatically.

One previous stereotype was that children with Autism occurred primarily in the families of educated middle-...

Table of contents

• Cover Page
• Title Page
• Copyright
• Contents
• Dedication
• Part I: Getting Oriented
• Part 2: Into the Depths
• Part 3: The Fallout
• Appendixs
• References
• Index