DSM-V & its Implications for DSM-V & its Implications for Schools & FamiliesSchools & Families

Prof Rita Jordan PhD OBEProf Rita Jordan PhD OBEEmeritus Professor in Autism StudiesEmeritus Professor in Autism Studies

University of Birmingham, UKUniversity of Birmingham, UK

Autism New Zealand Conference. Workshop Autism New Zealand Conference. Workshop Auckland, September 2012Auckland, September 2012

Current DiagnosisCurrent Diagnosis• ICD:10 & DSM:IV - based on underlying ‘triad’ ICD:10 & DSM:IV - based on underlying ‘triad’

of difficulties:of difficulties:– social & emotional understandingsocial & emotional understanding– communicationcommunication– flexibility in thinking & behaviourflexibility in thinking & behaviour

• ASD part of PDDASD part of PDD– autistic disorder (classical autism)autistic disorder (classical autism)– Asperger syndromeAsperger syndrome– atypical autism/ PDD-NOSatypical autism/ PDD-NOS

• DSM-V & ICD-11 coming (2012)DSM-V & ICD-11 coming (2012)

DSM-V & ICD-11DSM-V & ICD-11• PDDPDD

– all to be ASDall to be ASD– PDD-NOS gonePDD-NOS gone– Retts syndrome & Heller’s syndrome (CDD) medicalRetts syndrome & Heller’s syndrome (CDD) medical

• ASDASD– subcategories gone (i.e. no Asperger syndrome, no subcategories gone (i.e. no Asperger syndrome, no

PDD-NOS)PDD-NOS)– 2 dimensions not triad (social & communication 2 dimensions not triad (social & communication

combined)combined)– both dimensions compulsory for ASD diagnosisboth dimensions compulsory for ASD diagnosis

DimensionsDimensions

• move towards dimensions r.th. categoriesmove towards dimensions r.th. categories

• descriptors of place on each dimension as descriptors of place on each dimension as part of diagnosispart of diagnosis– better relates to ‘needs led’ servicesbetter relates to ‘needs led’ services

• ‘‘cut-off’ makes dimensions -> categoriescut-off’ makes dimensions -> categories

• dimensional diagnostic tool: DISCO (status dimensional diagnostic tool: DISCO (status of ADI & ADOS?)of ADI & ADOS?)

Sensory IssuesSensory Issues

• evidence that at extremes -DSM-V will recordevidence that at extremes -DSM-V will record• both over- and under-responsive to different sensesboth over- and under-responsive to different senses• ‘‘over-responsive’: sensory avoiding; ‘under-responsive’: over-responsive’: sensory avoiding; ‘under-responsive’:

sensory seekingsensory seeking• shield from sensitivities and/or desensitiseshield from sensitivities and/or desensitise• attach meaning to perception - reduce ‘bombardment’ of attach meaning to perception - reduce ‘bombardment’ of

meaningless stimulationmeaningless stimulation• aware of variability - use proximal blocksaware of variability - use proximal blocks• give environmental control to individual if possiblegive environmental control to individual if possible• reduce overall stress reduce overall stress • teach to monitor and manage levels of arousalteach to monitor and manage levels of arousal

Co-MorbiditiesCo-Morbidities

Wing: “Wing: “Nature never draws a line without smudging it”Nature never draws a line without smudging it”• ASD rarely occurs as sole disorderASD rarely occurs as sole disorder• additional developmental disorders & later anxiety additional developmental disorders & later anxiety

disordersdisorders• current diagnostic hierarchy rules deny reality:current diagnostic hierarchy rules deny reality:

– language disorder & autismlanguage disorder & autism– ADHD & ASDADHD & ASD

• expression of disorders affected by comorbid conditionsexpression of disorders affected by comorbid conditions

Problems in Current SystemsProblems in Current Systems

• sub categories poor validitysub categories poor validity• social & communicative linked social & communicative linked • inappropriate basis for servicesinappropriate basis for services• poor guide to prognosis and treatmentpoor guide to prognosis and treatment• boundary between PDD-NOS & ‘typical’ too vague and boundary between PDD-NOS & ‘typical’ too vague and

inconsistentinconsistent• AS assumed to mean ‘mild autism’ but muddled with IQ AS assumed to mean ‘mild autism’ but muddled with IQ

– separate dimensions of autism severity & intelligenceseparate dimensions of autism severity & intelligence

Status of DiagnosisStatus of Diagnosis

• ASD may be ‘family of dimensional phenotypes’ ASD may be ‘family of dimensional phenotypes’ including:including:– symptoms (diagnostically differentiating)symptoms (diagnostically differentiating)– level of functioninglevel of functioning– psychiatric and medical co-morbiditiespsychiatric and medical co-morbidities

• NICE (2011) : ‘autism’ not just a medical diagnosis but a NICE (2011) : ‘autism’ not just a medical diagnosis but a social/care responsibility’social/care responsibility’

• Szatmari (2011) ASD - great heterogeneity of: Szatmari (2011) ASD - great heterogeneity of: – phenotypesphenotypes– outcomesoutcomes– risk factorsrisk factors

Reasons for DiagnosisReasons for Diagnosis

• to provide outcome status for research on causal to provide outcome status for research on causal pathwayspathways

• to develop and evaluate treatment to develop and evaluate treatment • to enable identity & support /training for to enable identity & support /training for

individuals, families and professionalsindividuals, families and professionals• to create cohesion and order among ‘symptoms’to create cohesion and order among ‘symptoms’• should not be for ‘rationing’ of services- should should not be for ‘rationing’ of services- should

be ‘needs-led’be ‘needs-led’

Problems with DSM-VProblems with DSM-V

• Mandy et al (2011) what will happen to Mandy et al (2011) what will happen to PDD-NOS individuals?PDD-NOS individuals?– only 2/66 children with PDD-NOS would score only 2/66 children with PDD-NOS would score

as having ASD in DSM-Vas having ASD in DSM-V– join ‘social & communication difficulties’ join ‘social & communication difficulties’

diagnosis but this is behaviour-baseddiagnosis but this is behaviour-based

• only interim stage until valid sub-groupsonly interim stage until valid sub-groups

Problems with DSM-V (2)Problems with DSM-V (2)

• Partland et al (2012) - re ‘diagnosed’ data from DSM-IV Partland et al (2012) - re ‘diagnosed’ data from DSM-IV under DSM-V under DSM-V – specificity good but sensitivity for AS & PDD-NOS poor i.e. specificity good but sensitivity for AS & PDD-NOS poor i.e.

many of more able ‘missed’many of more able ‘missed’

• ignores language level within diagnosis yet research shows ignores language level within diagnosis yet research shows major outcome variablemajor outcome variable

• if language is ‘outside’ diagnosis why is RSB in?if language is ‘outside’ diagnosis why is RSB in?

Personal Reactions?Personal Reactions?

• link with identity (usually AS)link with identity (usually AS)– ““ASD of the Asperger type”ASD of the Asperger type”

• social reactions need to be anticipated and planned forsocial reactions need to be anticipated and planned for• adjustment periodadjustment period

– regular services not preparedregular services not prepared– specialist services too limited & segregatedspecialist services too limited & segregated– individualisation not adequately trainedindividualisation not adequately trained

• break with categorical/ medical modelbreak with categorical/ medical model– ASC vs ASD?ASC vs ASD?

Services post DSM-VServices post DSM-V

• fulfill all advice for ‘needs-led’ servicesfulfill all advice for ‘needs-led’ services• helps move towards integrated serviceshelps move towards integrated services• reinforces responsibility of allreinforces responsibility of all

– ‘‘special’ is understanding and approach - not locationspecial’ is understanding and approach - not location– research shows best model is skilling of ‘typical’ servicesresearch shows best model is skilling of ‘typical’ services

• fits recognition of prognosis depending on services, not fits recognition of prognosis depending on services, not just diagnosisjust diagnosis

• better ‘fit’ for individual at appropriate levelbetter ‘fit’ for individual at appropriate level

IndividualisationIndividualisation

• move beyond rhetoric & ‘lip-service’move beyond rhetoric & ‘lip-service’• recognise individual differences important recognise individual differences important

for education & treatmentfor education & treatment– sociabilitysociability– language disorderlanguage disorder– sensory responsivenesssensory responsiveness– intelligenceintelligence– impulsivity (ADHD)impulsivity (ADHD)

EBP vs ESTEBP vs EST

• Evidence Supported Treatment Evidence Supported Treatment – existing treatmentexisting treatment

– evaluation of treatmentevaluation of treatment

• Evidence Based PracticeEvidence Based Practice– starts with individualstarts with individual

– evaluates what is best for individualevaluates what is best for individual

– takes account of EST & processtakes account of EST & process

• EBP supported by more individualised diagnosisEBP supported by more individualised diagnosis

ASD as a Social Instinct DeficitASD as a Social Instinct Deficit

• Sigman et al (2004) qualitative social difficulties Sigman et al (2004) qualitative social difficulties most universal & specific dimension of ASDmost universal & specific dimension of ASD

• not TOM but not TOM but need need for TOMfor TOM• early aspects of social salience, joint attention, early aspects of social salience, joint attention,

communication gestures etccommunication gestures etc– sociability as individual not diagnostic factorsociability as individual not diagnostic factor

• supported by neurophysiology & imaging as well supported by neurophysiology & imaging as well as by treatment outcomesas by treatment outcomes

Teaching about EmotionsTeaching about Emotions

• self then othersself then others• explicit meaning through:explicit meaning through:

– mirrors - attention to own mirrors - attention to own – unambiguous emotional expressions unambiguous emotional expressions – explicit labeling - external cues?explicit labeling - external cues?– contextcontext

• managing extreme emotional reactionsmanaging extreme emotional reactions• enjoyable experiences enhance learningenjoyable experiences enhance learning

EvidenceEvidence

• no single approachno single approach

• evidence for:evidence for:– structure structure

– broad modern behavioural methodsbroad modern behavioural methods

– training parents in social interaction & communication techniquestraining parents in social interaction & communication techniques

– play-based early interventions (15 hrs/ week)play-based early interventions (15 hrs/ week)

• in all studies some do well and some do notin all studies some do well and some do not

• in all studies children tend to learn only what are explicitly in all studies children tend to learn only what are explicitly taughttaught

Reasons for challenging Reasons for challenging behaviour in ASDbehaviour in ASD

• biologybiology– epilepsyepilepsy– perception/ sensory disturbanceperception/ sensory disturbance– sensory ‘deprivation’sensory ‘deprivation’– reactions to painreactions to pain

• lack of communication skillslack of communication skills• lack of self-awarenesslack of self-awareness• adaptation to the environmentadaptation to the environment

Background FactorsBackground Factors

• DietDiet– peptide theorypeptide theory– effects of dietseffects of diets

• SleepSleep– chronic deprivationchronic deprivation– melatoninmelatonin

• ExerciseExercise– daily aerobicdaily aerobic

Severe Types of Anxiety Severe Types of Anxiety DisordersDisorders

• phobiasphobias

• panic attackspanic attacks

• obsessive compulsive disorderobsessive compulsive disorder

• post traumatic stress syndromepost traumatic stress syndrome

• personality disorderpersonality disorder

General ApproachGeneral Approach

• reduce stress by:reduce stress by:– use of prosthetic devicesuse of prosthetic devices– increasing understandingincreasing understanding– improving coping skillsimproving coping skills

• accept nature of the autistic difficulties i.e. take accept nature of the autistic difficulties i.e. take perspective of person with ASDperspective of person with ASD

• priority to communication &interpersonal priority to communication &interpersonal developmentdevelopment

A Positive ApproachA Positive Approach

• move away from aversivesmove away from aversives

• understand meaning and functionunderstand meaning and function

• need positive alternativeneed positive alternative– not inhibitionnot inhibition

– teaching consequencesteaching consequences

• structured settingstructured setting

• accept phobias etc..accept phobias etc..

Practical issuesPractical issues• reflectionreflection

– allow timeallow time– include emotional contextinclude emotional context– make pragmatically relevantmake pragmatically relevant

• real and informed choicesreal and informed choices– menusmenus– flow charts for challenging behaviourflow charts for challenging behaviour– positive experience of alternativespositive experience of alternatives

Practical issues (cont)Practical issues (cont)

• opportunities for control of others/ eventsopportunities for control of others/ events– with feedbackwith feedback

• external cueing of emotional statesexternal cueing of emotional states– notice signsnotice signs– teach to person with ASDteach to person with ASD– make relevant - i.e. lead to actionmake relevant - i.e. lead to action

Changing BehaviourChanging Behaviour

• difficult to inhibit actions difficult to inhibit actions

• change the environmentchange the environment

• prevent the response & train alternativeprevent the response & train alternative

• develop self control (supports)develop self control (supports)

• functional analysisfunctional analysis

• teach adaptive behavioursteach adaptive behaviours

• plan - do - reflectplan - do - reflect

Functional Analysis -autism Functional Analysis -autism specificspecific

• SettingsSettings– ‘‘last straw’ not always ‘trigger’last straw’ not always ‘trigger’– whole child (inc. skills) & whole school approach whole child (inc. skills) & whole school approach – parent collaborationparent collaboration

• BehaviourBehaviour– accurateaccurate– frequencyfrequency– durationduration– intensityintensity

• ResultsResults

Making it worseMaking it worse

• transactional nature of autismtransactional nature of autism– frustration & deskilling of carersfrustration & deskilling of carers

• literal reading of behaviourliteral reading of behaviour• fearfear• short-term successshort-term success

– ‘‘punishment’ may be a rewardpunishment’ may be a reward– predictability is paramountpredictability is paramount

Potential DangersPotential Dangers

• whole notion of diagnosis may be lost in needs led whole notion of diagnosis may be lost in needs led servicesservices

• without autism awareness behaviour may be without autism awareness behaviour may be misunderstoodmisunderstood

• specialisd input may be delayed until child has specialisd input may be delayed until child has ‘learnt to fail’‘learnt to fail’

• autism gives new meaning to behaviour and new autism gives new meaning to behaviour and new urgency in developing appropriate interventionsurgency in developing appropriate interventions

Starting OffStarting Off

• best to act ‘as if’ the child has autismbest to act ‘as if’ the child has autism• successful preemption of anxiety may prevent co-successful preemption of anxiety may prevent co-

morbiditiesmorbidities• remediating behavioural abnormalities/ remediating behavioural abnormalities/

differences may still leave the child vulnerabledifferences may still leave the child vulnerable• need to understand resilience, from longitudinal need to understand resilience, from longitudinal

studies - need diagnosis to enable thisstudies - need diagnosis to enable this• need to work on understanding first, then give need to work on understanding first, then give

positive natural experiences in which learning is positive natural experiences in which learning is facilitatedfacilitated

Early Social/ emotional Early Social/ emotional engagementengagement

• more able to engage socially if structured through more able to engage socially if structured through enjoyable activityenjoyable activity

• mutually enjoyable activity increases:mutually enjoyable activity increases:– social skills & understandingsocial skills & understanding– communicative abilitycommunicative ability– flexibilityflexibility

• difference between lack of understanding and non-difference between lack of understanding and non-compliance compliance – need for parents and professionals to understand the condition need for parents and professionals to understand the condition

from the startfrom the start– more able (with language) more misunderstood -fewer more able (with language) more misunderstood -fewer

diagnosed?diagnosed?

ConclusionConclusion

• some logical changes but not allowed for social/ some logical changes but not allowed for social/ personal reactionspersonal reactions

• opportunity to re-focus on needs and individual opportunity to re-focus on needs and individual differencesdifferences

• chance to integrate diagnosis with assessment chance to integrate diagnosis with assessment leading to individualised servicesleading to individualised services

• ASC vs ASD to ‘deal with’ expansion of numbersASC vs ASD to ‘deal with’ expansion of numbers– cognitive style vs disability cognitive style vs disability