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DSM-V & its Implications for
Schools & Families
Prof Rita Jordan PhD OBE
Emeritus Professor in Autism Studies
University of Birmingham, UK
Autism New Zealand Conference. Workshop
Auckland, September 2012
Current Diagnosis
• ICD:10 & DSM:IV - based on underlying ‘triad’
of difficulties:
– social & emotional understanding
– communication
– flexibility in thinking & behaviour
• ASD part of PDD
– autistic disorder (classical autism)
– Asperger syndrome
– atypical autism/ PDD-NOS
• DSM-V & ICD-11 coming (2012)
DSM-V & ICD-11
•
PDD
–
–
–
•
all to be ASD
PDD-NOS gone
Retts syndrome & Heller’s syndrome (CDD) medical
ASD
–
–
–
subcategories gone (i.e. no Asperger syndrome, no
PDD-NOS)
2 dimensions not triad (social & communication
combined)
both dimensions compulsory for ASD diagnosis
Dimensions
• move towards dimensions r.th. categories
• descriptors of place on each dimension as
part of diagnosis
– better relates to ‘needs led’ services
• ‘cut-off’ makes dimensions -> categories
• dimensional diagnostic tool: DISCO (status
of ADI & ADOS?)
Sensory Issues
• evidence that at extremes -DSM-V will record
• both over- and under-responsive to different senses
• ‘over-responsive’: sensory avoiding; ‘under-responsive’:
sensory seeking
• shield from sensitivities and/or desensitise
• attach meaning to perception - reduce ‘bombardment’ of
meaningless stimulation
• aware of variability - use proximal blocks
• give environmental control to individual if possible
• reduce overall stress
• teach to monitor and manage levels of arousal
Co-Morbidities
Wing: “Nature never draws a line without smudging it”
• ASD rarely occurs as sole disorder
• additional developmental disorders & later anxiety
disorders
• current diagnostic hierarchy rules deny reality:
– language disorder & autism
– ADHD & ASD
• expression of disorders affected by comorbid conditions
Problems in Current Systems
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•
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sub categories poor validity
social & communicative linked
inappropriate basis for services
poor guide to prognosis and treatment
boundary between PDD-NOS & ‘typical’ too vague and
inconsistent
• AS assumed to mean ‘mild autism’ but muddled with IQ
– separate dimensions of autism severity & intelligence
Status of Diagnosis
• ASD may be ‘family of dimensional phenotypes’
including:
– symptoms (diagnostically differentiating)
– level of functioning
– psychiatric and medical co-morbidities
• NICE (2011) : ‘autism’ not just a medical diagnosis but a
social/care responsibility’
• Szatmari (2011) ASD - great heterogeneity of:
– phenotypes
– outcomes
– risk factors
Reasons for Diagnosis
• to provide outcome status for research on causal
pathways
• to develop and evaluate treatment
• to enable identity & support /training for
individuals, families and professionals
• to create cohesion and order among ‘symptoms’
• should not be for ‘rationing’ of services- should
be ‘needs-led’
Problems with DSM-V
• Mandy et al (2011) what will happen to
PDD-NOS individuals?
– only 2/66 children with PDD-NOS would score
as having ASD in DSM-V
– join ‘social & communication difficulties’
diagnosis but this is behaviour-based
• only interim stage until valid sub-groups
Problems with DSM-V (2)
• Partland et al (2012) - re ‘diagnosed’ data from DSM-IV
under DSM-V
– specificity good but sensitivity for AS & PDD-NOS poor i.e. many
of more able ‘missed’
• ignores language level within diagnosis yet research shows
major outcome variable
• if language is ‘outside’ diagnosis why is RSB in?
Personal Reactions?
• link with identity (usually AS)
– “ASD of the Asperger type”
• social reactions need to be anticipated and planned for
• adjustment period
– regular services not prepared
– specialist services too limited & segregated
– individualisation not adequately trained
• break with categorical/ medical model
– ASC vs ASD?
Services post DSM-V
• fulfill all advice for ‘needs-led’ services
• helps move towards integrated services
• reinforces responsibility of all
– ‘special’ is understanding and approach - not location
– research shows best model is skilling of ‘typical’ services
• fits recognition of prognosis depending on services, not
just diagnosis
• better ‘fit’ for individual at appropriate level
Individualisation
• move beyond rhetoric & ‘lip-service’
• recognise individual differences important
for education & treatment
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–
–
–
–
sociability
language disorder
sensory responsiveness
intelligence
impulsivity (ADHD)
EBP vs EST
• Evidence Supported Treatment
– existing treatment
– evaluation of treatment
• Evidence Based Practice
– starts with individual
– evaluates what is best for individual
– takes account of EST & process
• EBP supported by more individualised diagnosis
ASD as a Social Instinct Deficit
• Sigman et al (2004) qualitative social difficulties
most universal & specific dimension of ASD
• not TOM but need for TOM
• early aspects of social salience, joint attention,
communication gestures etc
– sociability as individual not diagnostic factor
• supported by neurophysiology & imaging as well
as by treatment outcomes
Teaching about Emotions
• self then others
• explicit meaning through:
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–
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mirrors - attention to own
unambiguous emotional expressions
explicit labeling - external cues?
context
• managing extreme emotional reactions
• enjoyable experiences enhance learning
Evidence
• no single approach
• evidence for:
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structure
broad modern behavioural methods
training parents in social interaction & communication techniques
play-based early interventions (15 hrs/ week)
• in all studies some do well and some do not
• in all studies children tend to learn only what are explicitly
taught
Reasons for challenging
behaviour in ASD
•
biology
–
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•
•
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epilepsy
perception/ sensory disturbance
sensory ‘deprivation’
reactions to pain
lack of communication skills
lack of self-awareness
adaptation to the environment
Background Factors
• Diet
– peptide theory
– effects of diets
• Sleep
– chronic deprivation
– melatonin
• Exercise
– daily aerobic
Severe Types of Anxiety
Disorders
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•
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phobias
panic attacks
obsessive compulsive disorder
post traumatic stress syndrome
personality disorder
General Approach
• reduce stress by:
– use of prosthetic devices
– increasing understanding
– improving coping skills
• accept nature of the autistic difficulties i.e. take
perspective of person with ASD
• priority to communication &interpersonal development
A Positive Approach
• move away from aversives
• understand meaning and function
• need positive alternative
– not inhibition
– teaching consequences
• structured setting
• accept phobias etc..
Practical issues
• reflection
– allow time
– include emotional context
– make pragmatically relevant
• real and informed choices
– menus
– flow charts for challenging behaviour
– positive experience of alternatives
Practical issues (cont)
• opportunities for control of others/ events
– with feedback
• external cueing of emotional states
– notice signs
– teach to person with ASD
– make relevant - i.e. lead to action
Changing Behaviour
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difficult to inhibit actions
change the environment
prevent the response & train alternative
develop self control (supports)
functional analysis
teach adaptive behaviours
plan - do - reflect
Functional Analysis -autism
specific
• Settings
– ‘last straw’ not always ‘trigger’
– whole child (inc. skills) & whole school approach
– parent collaboration
• Behaviour
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–
–
–
accurate
frequency
duration
intensity
• Results
Making it worse
• transactional nature of autism
– frustration & deskilling of carers
• literal reading of behaviour
• fear
• short-term success
– ‘punishment’ may be a reward
– predictability is paramount
Potential Dangers
• whole notion of diagnosis may be lost in needs led
services
• without autism awareness behaviour may be
misunderstood
• specialisd input may be delayed until child has
‘learnt to fail’
• autism gives new meaning to behaviour and new
urgency in developing appropriate interventions
Starting Off
• best to act ‘as if’ the child has autism
• successful preemption of anxiety may prevent comorbidities
• remediating behavioural abnormalities/
differences may still leave the child vulnerable
• need to understand resilience, from longitudinal
studies - need diagnosis to enable this
• need to work on understanding first, then give
positive natural experiences in which learning is
facilitated
Early Social/ emotional
engagement
• more able to engage socially if structured through
enjoyable activity
• mutually enjoyable activity increases:
– social skills & understanding
– communicative ability
– flexibility
• difference between lack of understanding and noncompliance
– need for parents and professionals to understand the
condition from the start
– more able (with language) more misunderstood -fewer
diagnosed?
Conclusion
• some logical changes but not allowed for social/
personal reactions
• opportunity to re-focus on needs and individual
differences
• chance to integrate diagnosis with assessment
leading to individualised services
• ASC vs ASD to ‘deal with’ expansion of numbers
– cognitive style vs disability