Working with Working with Children and Young People Children and Young People

withwith Autistic Spectrum Disorders Autistic Spectrum Disorders

London Oct 20London Oct 20thth 2008 2008

Uttom ChowdhuryUttom Chowdhury

Bedfordshire and Luton NHS TrustBedfordshire and Luton NHS Trust

University of BedfordshireUniversity of Bedfordshire

Great Ormond Street HospitalGreat Ormond Street Hospital

uttom.chowdhury@blpt.nhs.ukuttom.chowdhury@blpt.nhs.uk

HistoryHistory

Leo Kanner (1943)Leo Kanner (1943)

Hans Asperger 1906-1980Hans Asperger 1906-1980

‘‘autistic psychopathy’ (1944)autistic psychopathy’ (1944)

Lorna Wing (1981)Lorna Wing (1981)

The nature of the problemThe nature of the problem

DSM/ICDDSM/ICD Deficits in reciprocal Deficits in reciprocal

social interaction skillssocial interaction skills

Deficits in the onset of Deficits in the onset of language and use of language and use of language for social language for social communicationcommunication

Unusual patterns of Unusual patterns of stereotyped behavior, stereotyped behavior, sensory sensitivities, and sensory sensitivities, and restricted interestsrestricted interests

Autism Spectrum Autism Spectrum DisordersDisorders

Asperger Syndrome

Atypical Autism

Autism

ICD 10 Diagnostic ICD 10 Diagnostic Criteria:Criteria:

Asperger’s SyndromeAsperger’s Syndrome no delay in languageno delay in language single words by 2 yearssingle words by 2 years communicative phrases by 3 yearscommunicative phrases by 3 years self-help skills/adaptive behaviour self-help skills/adaptive behaviour

during the first 3 yearsduring the first 3 years motor milestones/clumsiness?motor milestones/clumsiness? isolated special skills?isolated special skills?

ICD 10 (cont)ICD 10 (cont)

Abnormalities in at least 2 of the Abnormalities in at least 2 of the following:following:

eye to eye gaze, facial expression, eye to eye gaze, facial expression, body posture and social gesturebody posture and social gesture

peer relationships-inability to sharepeer relationships-inability to share response to other peoples emotions/ response to other peoples emotions/

behaviourbehaviour spontaneous seeking to share spontaneous seeking to share

enjoyment/ interestsenjoyment/ interests

ICD 10 (cont)ICD 10 (cont)

Intense pattern of behaviour in at least Intense pattern of behaviour in at least one of the following:one of the following:

Stereotyped and restricted pattern of Stereotyped and restricted pattern of interestinterest

compulsive adherence to compulsive adherence to routines/ritualsroutines/rituals

repetitive motor mannerismsrepetitive motor mannerisms preoccupation with part-objects or preoccupation with part-objects or

non-functional elements of playnon-functional elements of play

Prevalence issuesPrevalence issues

EpidemiologyEpidemiology

Autism 7-16 per 10,000 Autism 7-16 per 10,000

3.6-7.1 per 1000 children (7-16 3.6-7.1 per 1000 children (7-16 years)- Ehlers and Gilberg 1993years)- Ehlers and Gilberg 1993

Trends for diagnosis of autism in California

Data from http://adventuresinautism.blogspot.com/2006/01/california-autism-numbers-4th-quarter.html

The autism ‘epidemic’The autism ‘epidemic’

Over the past decade - a dramatic increase in Over the past decade - a dramatic increase in recognised cases, and controversy over the recognised cases, and controversy over the explanationexplanation

A recent study in Brick Township, New Jersey A recent study in Brick Township, New Jersey (Bertrand et al, JAMA, 2001) found up to (Bertrand et al, JAMA, 2001) found up to 1% of 1% of boysboys with an ‘Autistic Spectrum Disorder’ with an ‘Autistic Spectrum Disorder’

– – the majority of these ‘newly discovered’ cases the majority of these ‘newly discovered’ cases have normal-range IQhave normal-range IQ

Some myths about autism

– rare

– associated with demonstrable and unique brain pathology

– strongly associated with mental retardation

– strongly associated with regression in skills

– ruled out clinically by good language skills and normal eye contact

– likely to have a simple genetic substrate

More myths about autism

• People with the diagnosis are liable to be unemployable, unmarried and often incapable of living independently

• “The average child with autism will require $8 million in lifetime supervision and care”

–possible meaningfully to distinguish autism from Asperger syndrome

–Diagnostic classification rules are logically coherent in ICD-10

–Autism is the ‘extreme of the male brain’

AetiologyAetiology

Brain-size, amygdala,fusiform etcBrain-size, amygdala,fusiform etc

Cognition/ TheoriesCognition/ Theories

Genetics-2,7,15Genetics-2,7,15

?Environment?Environment

TheoriesTheories

Theory of MindTheory of Mind

Central Coherence DeficitCentral Coherence Deficit

Executive Function DeficitExecutive Function Deficit

Motor ‘clumsiness’Motor ‘clumsiness’

awkward in movements-soft signsawkward in movements-soft signs

poor co-ordinationpoor co-ordination

hard to write/shoelaces/knife and hard to write/shoelaces/knife and forkfork

SensitivitySensitivity

soundsound tactiletactile taste taste visualvisual smellsmell painpain temperaturetemperature

Rating ScalesRating Scales Autism Diagnostic Interview (Le Coueter Autism Diagnostic Interview (Le Coueter

et al 1989) et al 1989) Childhood Autism Rating Scale (Schopler Childhood Autism Rating Scale (Schopler

et al 1980)et al 1980) High Functioning Autism Spectrum High Functioning Autism Spectrum

Screening Questionnaire (Ehlers et al Screening Questionnaire (Ehlers et al 1993)1993)

Autism Screening Questionnaire Autism Screening Questionnaire (Berument et al 1999)(Berument et al 1999)

Checklist for Autism in Toddlers (Simon Checklist for Autism in Toddlers (Simon Baron-Cohen et al 2000)Baron-Cohen et al 2000)

3DI (Skuse et al, 2004)3DI (Skuse et al, 2004)

% answering yes

0 5 10 15 20 25 30 35 40

Does Not Follow Command UnlessCareful Worded

Does Not Respond When Told To DoSomething

Does Not Realise Offends People WithBehaviour

Does Not Understand How To BehaveWhen Out

Does Not Pick Up On Body Language

Does Not Understand Social Skills

Is Difficult To Reason With When Upset

Is Very Demanding Of Peoples Time

Behaviour Disrupts Normal Family Life

Does Not Notice Effects Of BehaviourOn Others

Does Not Realise When OthersAngry/Upset

Unaware Of Other Peoples Feelings

Whole sample SCDC:

Response to individual SCDC questions

response options:nosometimesoften

% answering sometimes or often

Proposed Proposed comorbidity comorbidity between dimensions of between dimensions of

autistic behavioural autistic behavioural phenotypephenotype

Language &social skillimpairments

Stereotyped behaviours &restricted interests

autismOCD

Tourette syndromeEating disorders

ADHDSLI/PLIConduct disorders

Reciprocal social interaction plotted Reciprocal social interaction plotted against use of language (ADI-R against use of language (ADI-R

algorithm)algorithm)

Use of language and other social communication skills

3020100

Rec

ipro

cal s

ocia

l int

erac

tion

30

20

10

0

Group

Normal/ clinical

(n=295)

Pragmatic Language

(n=59)

Atypical Autism

(n=215)

Asperger Syndrome

(n=109)

Autism Group

(n=138)R2 = 0.61

N=816

Social interaction/ communication plotted Social interaction/ communication plotted against repetitive and stereotyped against repetitive and stereotyped

behaviourbehaviour

Repetitive and stereotyped behaviour

14121086420-2

Soci

al i

nte

ract

ion a

nd c

om

munic

atio

n

100

80

60

40

20

0

Group

Normal/ clinical

(n=295)

Pragmatic Language

(n=59)

Atypical Autism

(n=215)

Asperger Syndrome

(n=109)

Autism

(n=138) R2=0.37

N=816

The gender ratio in The gender ratio in autismautism

• In low IQ samples it is c. 2.5:1In low IQ samples it is c. 2.5:1• In autism as a whole it is c. 4:1In autism as a whole it is c. 4:1• In higher-functioning autism and In higher-functioning autism and

Asperger syndrome it is as high as Asperger syndrome it is as high as 10:110:1

DiscussionDiscussion

In what way were males and females In what way were males and females different?different?

Repetitive Behaviour. Females scored Repetitive Behaviour. Females scored significantly lower than males on both 3Di significantly lower than males on both 3Di and ADOS.and ADOS.

Large store of factual informationLarge store of factual information Preoccupation with subject of passing interest Preoccupation with subject of passing interest

to other childrento other children Unusual interest in things that spinUnusual interest in things that spin

Underlying impairment

(genes – brain – cognition)

Behavioural triad of

impairments

Emotional, social,

functional, economic

consequences

Hypothesis OneHypothesis One

Females have the autism underlying impairment less often than males

Underlying impairment

(genes – brain – cognition)

Hypothesis TwoHypothesis Two

Female behavioural phenotype

Male behavioural phenotype

Emotional, social, functional, economic

consequences

Emotional, social, functional, economic

consequences

INTERVENTIONSINTERVENTIONS

InterventionIntervention

Sensory and Play Sensory and Play (holding/osteopathy/eye (holding/osteopathy/eye tracking etc)tracking etc)

Communication Communication (PACT/TEACCH/PECS/RPMT)(PACT/TEACCH/PECS/RPMT)

Social Skills Social Skills (TOM)(TOM)

Behavioural Behavioural (Functional Analysis/EIBI/ABA)(Functional Analysis/EIBI/ABA)

Behaviour Management Behaviour Management (Joint Attention)(Joint Attention)

Intervention 1Intervention 1

Sensory and PlaySensory and Play

Holding Cranial osteopathy Eye tracking Options Auditory Integration Etc etc etc

Intervention 2Intervention 2

CommunicationCommunication Pre School Autism Communication Pre School Autism Communication

Treatment (PACT)Treatment (PACT) Responsive Education & Pre-Linguistic Responsive Education & Pre-Linguistic

Milieu Teaching (RPMT)Milieu Teaching (RPMT) Teaching and Education for Autistic and Teaching and Education for Autistic and

Communication Disordered Communication Disordered Children(TEACCH)Children(TEACCH)

Picture Exchange Communication System Picture Exchange Communication System (PECS)(PECS)

Intervention 3Intervention 3

Social SkillsSocial Skills

Social SkillsSocial Skills

Theory of MindTheory of Mind

Intervention 4Intervention 4

BehaviouralBehavioural Functional AnalysisFunctional Analysis

Early Intensive Behavioural Intervention Early Intensive Behavioural Intervention (EIBI)(EIBI)

Applied Behaviour Analysis (ABA)Applied Behaviour Analysis (ABA)

Intervention 5Intervention 5

Behavioural ManagementBehavioural Management

Parent Child InteractionParent Child Interaction

Joint AttentionJoint Attention

SERVICESSERVICES

HealthHealth Social ServicesSocial Services Local Education AuthorityLocal Education Authority Voluntary SectorVoluntary Sector

HealthHealth

Speech and LanguageSpeech and Language Occupational TherapyOccupational Therapy PhysiotherapyPhysiotherapy Community Child ClinicsCommunity Child Clinics CAMHSCAMHS CLDCLD

Social ServicesSocial Services

Local facilitiesLocal facilities BenefitsBenefits Specialist Child CareSpecialist Child Care Respite servicesRespite services Therapy servicesTherapy services

EducationEducation

Special Educational NeedsSpecial Educational Needs Mainstream and supportMainstream and support Special SchoolsSpecial Schools

Voluntary SectorVoluntary Sector

Support GroupsSupport Groups Contact a FamilyContact a Family National Autistic SocietyNational Autistic Society

Mental HealthMental Health PsychologyPsychology Psychotherapy/FamilyPsychotherapy/Family Speech TherapySpeech Therapy ClassroomClassroom Occupational TherapyOccupational Therapy GroupGroup VolunteerVolunteer

Mental HealthMental Health

PsychosisPsychosis DepressionDepression Obsessive Compulsive DisorderObsessive Compulsive Disorder AnxietyAnxiety ADHD/TicsADHD/Tics Eating DisorderEating Disorder

PsychologyPsychology

IQIQ MemoryMemory AttentionAttention Executive FunctionExecutive Function Behaviour ManagementBehaviour Management Anger ManagementAnger Management CBT (video clip)CBT (video clip)

Anger managementAnger management

AcceptableAcceptable BiologyBiology Costs of angerCosts of anger Tips: relax, count to 10, drink Tips: relax, count to 10, drink

water,move away, listen to music, water,move away, listen to music, self-talk—make list and keep in self-talk—make list and keep in pocketpocket

Tips for ParentsTips for Parents

Don’t place child in stressful environmentsDon’t place child in stressful environments Avoid surprisesAvoid surprises Visual and concrete messages helpVisual and concrete messages help Be specific with praiseBe specific with praise Role play situationsRole play situations Identify feelings which your child cannot Identify feelings which your child cannot

verbalize, and talk these through once the verbalize, and talk these through once the crisis has settledcrisis has settled

Look after yourselfLook after yourself

Counselling/Counselling/Psychotherapy/FamilyPsychotherapy/Family

Not a cureNot a cure Treat personal issuesTreat personal issues Better understanding of differencesBetter understanding of differences SiblingsSiblings

Classroom 1Classroom 1

Internal Organizational DifficultiesInternal Organizational Difficulties Make connections with previous learning explicitMake connections with previous learning explicit Allow child time to process questions and infoAllow child time to process questions and info Encourage active listeningEncourage active listening Cue a child that you are going to ask question Cue a child that you are going to ask question

nextnext Visual cues, pre-recorded questions or prompt Visual cues, pre-recorded questions or prompt

sheetssheets Check listsCheck lists Diaries and notebooksDiaries and notebooks

Classroom 2Classroom 2

Sensory IntegrationSensory Integration Ensure child knows what to expect Ensure child knows what to expect

in different roomsin different rooms Position in classroom/dining roomPosition in classroom/dining room Serve food-don’t let them touch!Serve food-don’t let them touch! Non-slip mat/tray etcNon-slip mat/tray etc

Classroom 3Classroom 3

HandwritingHandwriting

Chairs correct heightChairs correct height

Plant feet on floorPlant feet on floor

Develop upper muscle strengthDevelop upper muscle strength

Graph paperGraph paper

Word processors/dictaphonesWord processors/dictaphones

Separate marks for Separate marks for content/presentationcontent/presentation

Classroom 4Classroom 4

Attention and Impulse ControlAttention and Impulse Control Minimize distractionsMinimize distractions Avoid heaters/projectorsAvoid heaters/projectors Structured lessons with defined tasks and Structured lessons with defined tasks and

expectationsexpectations Break tasks into chunksBreak tasks into chunks Reward good behaviourReward good behaviour StressballStressball Highlight key wordsHighlight key words

Classroom 5Classroom 5

MotivationMotivation Focus on strengthsFocus on strengths Negotiate manageable targetsNegotiate manageable targets Make it safe to risk failureMake it safe to risk failure Welcome mistakes as a way of Welcome mistakes as a way of

learninglearning Reduce fear of criticism and any Reduce fear of criticism and any

fears of looking stupidfears of looking stupid

Classroom 6Classroom 6

HomeworkHomework Lunchtime/homework clubLunchtime/homework club Homework diaryHomework diary Clear labelling/codingClear labelling/coding Clear and succinct instructionsClear and succinct instructions Written reminder to hand in Written reminder to hand in

homeworkhomework

Classroom 7Classroom 7

ExamsExams Extra timeExtra time Allow tests to be readAllow tests to be read Allow verbal responsesAllow verbal responses Word processorsWord processors Allow breaks during the examAllow breaks during the exam

Classroom 8Classroom 8

School DaySchool Day RoutinesRoutines Visual timetablesVisual timetables

Classroom 9Classroom 9

Hidden curriculumHidden curriculum Attitudes, styles of behaviour, Attitudes, styles of behaviour,

climate of relationshipsclimate of relationships Break and lunchtimeBreak and lunchtime

Classroom 10Classroom 10

BullyingBullying School policySchool policy DocumentDocument TalkTalk Talk re own experiencesTalk re own experiences HumourHumour Get the child to express –no should but I Get the child to express –no should but I

get upsetget upset Take precautionsTake precautions

HomeHome

Clear instructions and small number Clear instructions and small number of rulesof rules

Achievable rewardsAchievable rewards Prioritize the important thingsPrioritize the important things Understand the childUnderstand the child Reward improvementReward improvement

Home 2Home 2

Visual referencesVisual references TimersTimers SleepSleep PlayPlay DressingDressing Organization of personal belongingsOrganization of personal belongings Meal timesMeal times

Home 3Home 3

Personal carePersonal care Hair and make upHair and make up BathingBathing DomesticDomestic HobbiesHobbies

GroupGroup

Social skillsSocial skills Social storiesSocial stories Comic strip conversationsComic strip conversationsSocial demands of working in groups:Social demands of working in groups: Remain seated and focussedRemain seated and focussed Turn takingTurn taking Actively listening to, reporting backActively listening to, reporting back Adopting different rolesAdopting different roles Reaching consensusReaching consensus

VolunteerVolunteer

National Autistic SocietyNational Autistic Society Autism BedfordshireAutism Bedfordshire Others-ADHD etcOthers-ADHD etc

Multiagency:Multiagency: Parent partnershipParent partnership ConnexionsConnexions Social Social

services-practical/financial/respite/DLA etcservices-practical/financial/respite/DLA etc

CONCLUSIONCONCLUSION

Understand the conditionUnderstand the condition Understand the young personUnderstand the young person Signpost whenever you canSignpost whenever you can Remain a constant support figureRemain a constant support figure Educate othersEducate others