AUTISMA Practical Guide

for Parents and Teachers(Revised Second Edition)

Prithvi Perapa

Prachee PublicationsHyderabad, India.

Copyright © Prithvi Perapa 2007

First Publication: February 2007

Revised Second Edition: October 2015

ISBN: 978-81-7443-038-0

Price: Rs. 250/-

No part of this publication may be produced, stored in a retrieval system ortransmitted, in any form or by any means, electronic, mechanical, photocopying,recording or otherwise without the prior permission of the copyright owner.

Illustrations: Chandra and Prithvi

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to the memory of

my brother Dinakar

and my uncle Subrahmanyam

who left an everlasting impression on me

Contents

Terms You Need to Know

List of Abbreviations

Preface for second edition

About the Book

Chapter 1 Introduction to Autism Spectrum 1What is autism?

Chapter 2 Diagnosis and Assessment 12What behaviour do these professionals look for?Diagnostic toolsDifferential diagnosisEducational assessmentRole of family in diagnosis and educational assessment

Chapter 3 Effects on Family 23DiagnosisBringing up the child with autismLiving with an adult with autismPositive ImpactLabelled autisticProvision of servicesWhat can be done?

Chapter 4 Learning Theories and Approaches 36Theory of ‘inter-relatedness’Theory of mindTheory of weak central coherenceExecutive function deficiencyEmpathising and systemising theoryLearning stylesAlternative approaches to autism

Chapter 5 Communication 52Communication assessmentStrategiesYour role as communication partners

vi

Chapter 6 Social Interaction 82Developing a sense of selfConcept of waitMaking choicesResponses to conventional questionsExplaining social rulesSocial storiesAsking for helpTeaching emotionsAccepting different opinionsFostering friendshipSkills required for friendships

Chapter 7 Imagination and Play Skills 104Play and autismDevelopmental stages of playStages of social playGroup games

Chapter 8 Life Skills 113Toileting skillsEating problemsSex educationLeisure skillsVocational skills

Chapter 9 Visual Strategies 128Using visual supports for explainingUsing visual supports to express own needs

Chapter 10 Challenging Behaviour 148When is the behaviour challenging?What makes the behaviour challenging?Functional assessment of the behaviourStrategies

Chapter 11 Completing the Puzzle 171

vii

Auditory perception: ability to make sense of different kinds of informationone hears.

Augmentative alternative communication systems: is used as anumbrella term to define all the different alternative communication systemsthat are used with people with communication difficulties, such as signlanguage, symbol systems, and computer assisted communication.

Cerebral palsy: a condition where the person has jerky or uncontrolledmovements (commonly known as spastic). It is due to brain damage eitherbefore or after the birth.

Cognitive: ability to think and understand

Cue cards: small cards with written or pictorial information that can be usedas clues to complete an activity.

Developmental skills: skills (or behaviour) that are considered appropriateat various stages of an individuals’ growth.

Down’s syndrome: a condition that is caused before the birth due toabnormal chromosomes. A person having the condition will usuallyhave slanted eyes, loose muscles, and mental impairment.

Dyslexia: difficulty in reading, writing, and spelling, when compared to otheraspects of cognitive functioning. There are different kinds of difficulties thatare clubbed under this label.

Eclecticism: selecting ideas, beliefs, and strategies from various sources.

Expressive communication: to make ones ideas, thoughts, feelings,needs understood through words, gestures, pictures etc.

Fine motor skills: ability to do activities such as cutting, buttoning, winkingof eyes that require coordination of the small muscles in the body. Generallyfine-motor skills develop later than gross-motor skills.

Fragile X: a condition in which the person has a broken or weak Xchromosome. A person with the condition will usually have difficultiesin communication, and mental impairment.

Gross motor skills: activities that require coordination of the large musclesin the body. This includes activities such as running, walking, lifting a hand.

Idiosyncrasy: a behaviour that is peculiar to the person, or in this case acondition.

Mental impairment: abnormal mental development leading to lowintelligence.

Mind maps: a system where a person will jot down his/her ideas and thenjoins them together in a logical sequence. It is used, generally, to putthoughts together.

TERMS YOU NEED TO KNOW

viii

Motor planning: the ability to plan the movement of the various body parts.

Receptive communication: ability to receive knowledge, impressions andideas communicated by the other person.

Rett’s syndrome: a genetic condition that affects only females. A personaffected by the condition may lose the ability to speak, walk, and use handseffectively after a phase of normal development. The person usually starts ahand washing kind of movement that is repeated continuously. Some of themhave mental impairment also.

Sight vocabulary: or whole word learning, involves learning to read a word asa whole, without knowing the individual letters involved in making the word.

Tourette’s syndrome: a condition where the person has uncontrollable outbursts of movement, or words called tics. Sometimes a person maycontinuously swear, or wink their eyes without wanting to.

Tuberous Sclerosis: a genetic disorder in which tissues get swollen orenlarged. The organs that are usually affected are brain, eyes, and kidneys.Small lumps or moles start forming on the skin.

Visual perception: the ability to be aware of, and making sense of theincoming information through vision.

AAPEP Adolescent and Adult Psycho-educational ProfileABA Applied Behaviour AnalysisADI Autism Diagnostic Interview

ADOS Autism Diagnostic Observation ScheduleASD Autism Spectrum Disorder

ASDS Asperger Syndrome Diagnostic ScaleCARS Childhood Autism Rating ScaleCHAT Checklist for Autism in Toddlers

DISCO Diagnostic Interview for Social and Communication disordersDSM IV Diagnostic and Statistical Manual, 4th edition

FC Facilitated CommunicationGADS Gilliam Asperger’s Disorder ScaleGARS Gilliam Autism Rating ScaleICD 10 International Classification of Diseases, 10th edition

IEP Individual Education ProgrammePDD Pervasive Developmental Disorder

PDD-NOS Pervasive Developmental Disorder Not Otherwise SpecifiedPECS Picture Exchange Communication System

PEP-R Psycho-educational Profile- RevisedTEACCH Treatment and Education of Autistic and Related

Communication Handicapped Children

ABBREVIATIONS USED

ix

Preface for second edition

I am very grateful for the positive feedback I have received for thefirst edition of this book. With increasing access to the internet, it iseasier to find a wide range of information on autism these days andmaybe the initial focus of wanting accessible information on thesubject in India is not as relevant. However, the variety and volume ofinformation on the web can also be misleading at times. I have basedthis book on research evidence and my practice. Changes in Indianlegislation are leading to more children on the autism spectrumattending ordinary schools. Therefore, I feel that thereis still a needfor a comprehensive book which provides theoretical knowledge aswell as practical strategies for teachers and parents, and I havemaintained that focus in this edition of the book.

The main content and structure remains the same as the previousedition. However, knowledge is ever evolving and since the firstedition new theories and approaches have been developed. Thisedition includes these, such as empathising and systemizing theoryas well as approaches and strategies such as Social Communication,Emotional Regulation, Transactional Support (SCERTS) and powercards. The content has been updated and the book has been re-edited which should improve its accessibility. A reference list ofprimary sources cited in the book has been included so that you as areader can find these if you would like to further your knowledge.Acknowledging the increasing use of the web where you wouldperhaps find the latest information about organisations, I decided toremove the list in the appendices along with the checklist for autismin toddlers (CHAT). The original and revised versions for this areeasily accessible on the web now. I hope that you will find therevisions in the book useful.

x

About the book

I can never forget my first experience in the centre for autism as ateacher trainee. As I entered the classroom I was amazed at thedifferent levels of functioning and understanding within the class. Therewas something mystic about these children that grabbed my attention. Iended up doing all my teacher training lesson plans and practicals in thecentre. I was able to do this in spite of the fact that autism was not evenmentioned in our course in those days. I will always remain thankful tothe course coordinator, Mrs. Mythily Chari, who provided me with theflexibility to discover what slowly turned into a passion.

The following years of work in the autism centre were very challenging.All those strategies that I have learnt during my training days did notseem to work with this group of children. Books and material on autismwas practically unavailable in India, in those days. We would eagerlywait for any volunteers coming from abroad so that we can getinformation about the latest techniques being used there. But thesevisits were few and far between. Most times I along with Mrs. PurnimaJain, the in-charge of the centre at that time, had to believe in ourintuition and teach on the basis of trial and error. We had somewonderful successes along with heartbreaking failures. In the later yearswhen I became the head of the centre I was again struck by the lack ofresources at every point that I had to train a new member of staff. Iwould often wonder if only there was a book that I could pass on to mystaff members.

Unfortunately there were none available. The idea for this book camefrom my own personal need. I have tried to share my experiences andstrategies that I have used and which have worked with the students Iwas working. I always consider parents of children with autism aspartners in the process of teaching since I have learnt a lot from some ofthe parents of my students. Hence this book is jointly addressed toparents as well as teachers. I believe that it is important to shareknowledge so that we can have common understanding of our children.

Some of the parents and family members reading this book may feeloverwhelmed by the number of strategies and the theory explanation.My idea was to create a comprehensive book about autism, which youcan refer back to at the relevant point of time. You may not require inone go all the strategies suggested, but you will know where to find

xi

them, when needed. I tried to keep the theory section as brief aspossible, but I felt it was important for you to know this to betterunderstand your child with autism.

Two sections, Effects on family, and Diagnosis and assessment, aremore relevant to professionals than parents, but my own experience ofparents of children with autism is that they are usually as good asprofessionals! So, even parents can read them.

Each chapter in the book has been written with an idea to make it selfsufficient, so that it will be easy for readers to dip into the sections thatthey are interested in. Unfortunately, this means there is a certainelement of repetition for the readers who will read the whole book inone go.

Our knowledge about autism is increasing on a regular basis and theinterventions being used are also changing accordingly. I would like tostate that the book is providing only basic information. You as a teacheror parent will have to adapt and create new strategies according to theneeds of your children. When your child ultimately achieves that difficulttask after days of hard work that you have put in, every moment of itseems worthwhile. Be creative and enjoy the process of teaching thesechildren.

Note about terminologyI have mostly used the pronoun ‘he’ to indicate a child with autism, forease in reading and also because there are more male children withautism. The term children or child has been used to indicate individualswith autism from all age groups. I have also used the term autism ratherthan autism spectrum disorder, Asperger syndrome, High-functioningautism, Pervasive development disorder, etc. simply to reduce theconfusion. The term autism has been used to indicate the whole spectrum.

A note of thanksI would like to thank all the individuals with autism that I worked with,and their family members for teaching me so much. A special thanksgoes to Pushpalata Rao whose article has been used in one of thechapters to highlight family experiences. My special thanks go to MehreenKhosla, who encouraged me to write the book, and took time to commenton its contents during the whole process. I would also like to thank ColinGregory for his feedback. Comments from both of them have helped meto make this book more comprehensive, and easier to read.

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Chapter 1Introduction to Autism Spectrum

What is autism?

Autism Spectrum Disorder (ASD) or autism spectrum is anumbrella term used to cover a range of difficulties in threemain areas of development. These are:

• Social communication;• Social interaction; and• Social imagination and flexible thinking skills

It is a developmental disorder, which means a disability orimpairment that affects an individual during childhood. Hence,the symptoms are usually evident by the age of three.

The recent changes in the diagnostic criteria (DiagnosticStatistical Manual (DSM 5, 2013) has led to the reduction of

Five year old Abhay is a wizard on computers. His father hasdifficulties with the computer as Abhay keeps changing the fonts,screen savers and other settings every time he puts it on.Watching him work at the computer, one would never think thathe had any kind of difficulties. It becomes obvious only whensomeone else wants to share the computer with him, or whenthere is a power cut while he is working on it. Abhay finds suchsituations very distressing and starts crying and kicking things.

He was a calm and undemanding baby and his parents wereproud of this. He also had no fear of new people; even as atoddler he would run up to an adult and ask for whatever hewanted. When he was four the family went shopping and werewalking on the street when he noticed a man eating ‘Jalebi’ (anIndian sweet). He walked up to the man and said “Abhay wants toeat Jalebi.” From then on, Abhay’s parents noticed all manner ofstrange behaviour, which made it increasingly difficult for him to bepart of any social circle.

His parents still find it hard to understand their child’s autism. Thereare times when he looks so much like a ‘normal child’ and then thevery next moment he is unable to cope with a simple demand.

2 Autism: A Practical Guide for Parents and Teachers

these three areas of difficulties (called ‘triad of impairments’) toonly two by combining communication and social interactionunder one heading. It has also added sensory differences aspart of social imagination, as a high proportion of people withautism show abnormal reactions to different sensations.Although DSM 5 states only two areas, the following section willbe covering all these four as separate areas to provide clarity.

1. Communication

The main purpose for communication is to share informationwith others. Communication skills encompass thedevelopment of language (both spoken and written), theappropriate use of language to communicate, the ability togain information about others through their ‘non-verbal’language, and the ability to communicate information throughone’s own non-verbal language system.

People with autism have difficulties in almost all these aspects ofcommunication that we take so much for granted, includinginitiating a conversation. By non-verbal I mean the use of bodylanguage, gestures, facial expressions, tone and pitch of voice, tolet others know what we are thinking of or feeling. The difficulty incommunication is often mistaken as a difficulty in language andspeech, but this need not always be the case in autism.

A diagnosis of autism does not define the rate and level oflanguage and speech development in each person withautism. The ability to learn language (spoken and written)varies widely. Some people with autism may not develop anyspoken language. In these children, skills such as pointing andsharing attention are lacking. They may not compensate fortheir lack of speech with gestures or pointing, as most otherchildren with speech difficulties do.

Even children who have adequate speech and a goodunderstanding of grammar can still lack the skills tocommunicate. Autism is indeed one of the few conditionswhere the development of speech and language does notnecessarily lead to development of communication. If

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