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Autism across the lifespan

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					Autism across the lifespan:
where we are now & what does
              the future hold?


             Ann Le Couteur
         Newcastle University
                          UK
                       p
Autism across the lifespan: where
we are now & what does the future hold?

   Where we are now?
       Definition; Development & Diagnosis
       Interventions & Impact of Co-morbidity
       What do we know about the Outcomes for
        Adolescents & adults with ASD?
   Wh t does the future hold?
    What d    th f t     h ld?
       Challenges & Conclusions
Definition : Autism/ASD/ASC
   Autism/ASD/ASC: lifelong severe
    neurodevelopmental disorder(s) with a considerable
    functional and financial impact on the individual and
    family
   Prevalence estimate of 1% (Baird et al,2006; Baron-Cohen
    et al 2009; Brugha et al 2010)
   ASDs are unique in their pattern of deficits and
    areas of relative strengths
   Hugh burden of care
       Recent UK estimates: £28 billion (Knapp et al 2009)
   Increased awareness about needs across
    lifespan
Stephen Wiltshire
drawing from memory




  Stephen spent 30 minutes taking in 360 degrees of Tokyo skyline from the roof
  top of Roppongi Hills (270 meters up). Over the next seven days he drew, from
  memory, a remarkably accurate panorama of the Tokyo skyline
Drawing by Gilles Trehin www.urville.com
Definition:
   Neurodevelopmental Disorders
     Autism Spectrum Disorders
     Specific language impairment (SLI)
     Dyslexia
      Attention deficit h
     Att                      ti it disorder
            ti d fi it hyperactivity di d (ADHD)
     OCD & Tourette’s syndrome
    “For all these disorders persistence into adult life
     For
      involves a mixture of the expected & unexpected and
      substantial challenges remain in the identification of
                       variables”
      key mediating variables Rutter 2006
Pervasive Developmental Disorders
(ICD-                 (DSM-IV-
(ICD-10) (WHO 1992) ; (DSM-IV-TR)* (APA
                               1994,2000)

   F84.0 Childhood autism *(Autistic disorder)
   F84.1 Atypical autism
   F84.2 Rett syndrome *
   F84.3 Other childhood disintegrative disorder*
   F84.4 Overactive disorder associated with mental
    retardation and stereotyped movements
   F84.5 Asperger’s Syndrome *
   F84.9 Pervasive Developmental Disorder,
            ifi d *(PDD-
    unspecified *(PDD-NOS)
Autism/ Autism Spectrum
Disorders
   Changes in diagnostic concept:
       Autism (infantile autism)
       Broad spectrum of disorders (ASD)(ASC)(BAP)
    (Wing 1978; Wing & Gould 1979; Frith 1991; Volkmar et
      al 2004; Johnson et al 2007; Gen pop studies)
   Lifelong persistent difficulties
       Communication & Social interactions
       Restricted, repetitive & stereotyped behaviours
       Additional co-morbidities
Early Development & Diagnosis
 equally              diagnose,        diagnose,
“equally important to diagnose and not diagnose
accurately” SIGN 2007

   Life long ‘label’ & behaviour changes with
    age
   Developmental deviance from impairment/
    delay
   Diff diagnosis/how to define bdaries of
    spectrum
     p
   When developmental difficulties began
   Co-morbidity with other disorders
    Co-
                  non-
    Presence of non-specific difficulties
    that may be important for outcome &
    research
                                                                                                                                          39.0
                                                                                                                                          3
                                                                                                                                          1.0
                                                                                                                                          1
                                                                                                                                          33.0
                                                                                                                                          3
                                                                                                                                          3
                                                                                                                                          30.0
                                                                                                                                          29.0
                                                                                                                                          2
                                                                                                                                          26.0
                                                                                                                                          2
                                                                                                                                          2
                                                                                                                                          25.0
                                                                                                                                          22.0
                                                                                                                                          2
                                                                                                                                          19.0
                                                                                                                                          1
                                                                                                                                          1
                                                                                                                                          18.0
                                                                                                                                                 Age at Diagnosis




                                                                                                                                          17.0
                                                                                                                                          1
                                                                      Age at Diagnosis




                                                                                                                                          1
                                                                                                                                          16.0
Age at Diagnosis (All Subjects)

                                                             Autism




                                                                                                                                          1
                                                                                                                                          13.0
                                                                                                                                          1
                                                                                                                                          12.0
                                                                                                                                          1
                                                                                                                                          11.0
                                                                                                                                          1
                                                                                                                                          10.0
                                                                                                                                          9.0
                                                                                                                                          9
                                                2005 NAS survey




                                                                                                                                          8
                                                                                                                                          8.0
                                                                                                                                          7
                                                                                                                                          7.0
                                                                                                                                          6
                                                                                                                                          6.0
                                                                                                                                          5
                                                                                                                                          5.0
                                                                                                                                          4.0
                                                                                                                                          4
                                                                                                                                          3.0
                                                                                                                                          3
                                                                                                                                          2
                                                                                                                                          2.0
                                                                                                                                          1
                                                                                                                                          1.0
                                                                                                                             10




                                                                                                                                      0
                                                                                                    30




                                                                                                                    20
                                                                                          40




                                                                                                              Perc
                                                                                                                 cent
                                                                                                                                                69.0
                                  Asperger Syndrome




                                                                                                                                                56.0
                                                                                                                                                51.0
                                                                                                                                                49.0
                                                                                                                                                46.0
                                                                                                                                                44.0
                                                                                                                                                42.0
                                                                                                                                                39.0
                                                                                                                                                37.0
                                                                                                                                                35.0




                                                                                                                                                                    Age at Diagnosis
                                                                                                                                                32.0
                                                                       Age at Diagnosis


                                                                                                                                                30.0
                                                                                                                                                28.0
                                                                                                                                                26.0
                                                                                                                                                24.0
                                                                                                                                                22.0
                                                                                                                                                20.0
                                                                                                                                                18.0
                                                                                                                                                16.0
                                                                                                                                                14.0
                                                                                                                                                12.0
                                                                                                                                                10.0
                                                                                                                                                8.0
                                                                                                                                                6.0
                                                                                                                                                4.0
                                                                                                                                                2.0




                                                                                          14



                                                                                               12



                                                                                                         10



                                                                                                                8



                                                                                                                         6




                                                                                                                                          0
                                                                                                                                  2
                                                                                                                             4
                                                                                                               Percent
ASD guideline documents
   National Autism Plan for Children (NAP-C) (2003)
   Scottish Intercollegiate Guidelines Network SIGN
    No.     assessment,
    No 98 assessment diagnosis & clinical interventions for
    children & young people with autism spectrum disorders:
    a national clinical guideline (2007)
   American practice parameters (Johnson et al 2007)
   New Zealand ASD lifespan guideline (2008)
                 id li   for hild     d l
    NICE ASD guidelines f children & adolescents t
    2009-11 (? Interventions)
                                   2010 2012
    NICE ASD guidelines for adults 2010-2012
         Couteur
 (Ann Le Couteur, chair & editor)
Published National Autistic Society
                              2003
                www.nas.org.uk
Photo Album
   by alecouteur
Co morbidity in ASD
   Medical conditions
       Rutter et al 1994; Barton & Volkmar 1998; Kielinen et al 2004;
   Epilepsy & regression
       Tuchman & Rapin 2002;Billstedt & Gillberg 2005; Baird et al
        2008; Pickles et al 2009; Parr et al 2010
   Disordered sleep & food selectivity
    Di   d   d l       f d l ti it
       Bowers 2002; Wiggs & Stores 2004 Couturier et al 2005; Mills &
        Wing 2005; Polimeni et al 2005; Keen 2008
   Behaviour & mental health
       Bolton & Rutter 1994;Gilchrist et al 1997; Green et al, 2000;
        Gillott et al 2001; Bromley et al 2002; Mills & Wing 2005; Witner
        & Lecavalier 2005; Brereton et al 2006; Hutton et al
        2008;Simonoff et al 2008
            y            p
Co morbidity in Autism Spectrum
Disorders (Simonoff et al, 2008)
   Special Needs and Autism Project (SNAP)
   South East London total population cohort
         hild   (10-        )
    112 children (10 14 years)
   Child & Adolescent Psychiatric Assessment (CAPA)
                        co morbid disorder
        70% at least one co-morbid disorder*
       41% two or more
         y          ;       ;
    Anxiety disorders; ADHD;ODD
   Few associations between risk factors & psychiatric
    disorder
   Autism severity nor IQ predictor of disorder
    A ti         it            di t   f di d
   Underpinning mechanisms?
Daslne: children with ASD in North
East
                                Problem behaviours occurring frequently

           70.00


           60.00
           60 00




                                                                                                                                               *
           50.00


           40.00
           40 00
       %




           30.00


           20.00


           10.00


            0.00




                                                                                                                  eluctant to leave
                           Toileting




                                                                                                Injury to self
                                                                   s
                   Sleep




                                                                                                                                                         Eating
                                                                       Aggression to




                                                                                                                                               Anxiety




                                                                                                                                                                   ensory reactions
                                        yper periods



                                                        Tem tantrum




                                                                                       others




                                                                                                                                      parent
                                                        T per
                                       H




                                                                                                                  e




                                                                                                                                                                  Se
                                                       Type of problem behaviour                                 R
National Autism Plan for Children
N ti   l A ti   Pl f Child
                         Le Couteur et al, 2003

Individual plan
  Written report on Multi-Agency A
 W itt         t   M lti
                    Multi-A               t
                                 Assessment
       diagnosis
        kill       d
        skills & needs
   Key worker to support family
     f
    Information on autism & on local services
   Family care plan and specific support
   Child-
    Child-focused interventions
                co-
    Treatment of co-morbidities & need for
    Regular reviews
Interventions

“ Much progress has been made in
                               individuals
  understanding and treating ‘individuals’
  with ASD, and all indications are that
  earlier detection and intervention will do
  much to minimise the associated
                    further”
  disabilities even further
            Bryson, Rogers and Fombonne, 2003
Findings from children & young people:
Interventions

     “… research suggests that early
    intervention can result in significant
   improvements for some children with
     autism/ASC though for how many
     autism/ASC,
    children and for how much gain has
    varied considerably across studies.”
                      Lord et al 2005
                                                 Clinician referral
    Design
• First large RCT of an early                Full baseline assessment
psychosocial treatment
p y                                             Diagnostic, cognitive,
                                                     interaction
     3 site 2 arm, N=152
     2-4,11 yrs; core autistic disorder
    (ADOS-G/ADI-R)                                Randomisation
    Testing      d l deliverable i
    T ti a model d li        bl in
    the NHS                                PACT + TAU         TAU
    Cost effectiveness analysis            Fortnightly        Community
                                           SALT sessions      services
• Pre-specified primary outcome and
        analysis plan
                                                       p
                                          7m: Brief midpoint assessment
• Blinded rating of outcomes
                                           PACT +TAU         TAU
•Testing mediating mechanisms              Monthly           Community
    Use of RCT design to test basic        boosters          services
    science hypotheses
                                                13   Full   d i t
                                                13m: F ll endpoint
                                                   assessment
                 Attenuation of treatment effect on generalisation
                 across interaction and context




                                       Child             Child                        CONTEXT
  PACT             Parent                                              Child
                                    interaction        interactn.
Interventn.
Interventn    interaction with                                           in
                                    with Parent           with
                   Child                                               School
                                                        Assessor




                Parental           Child              Autism          Social          MEASURE
                    h
                synchrony          i ii i
                                   initiations        symptoms        f    i i
                                                                      functioning
                                                      (ADOS)ES        in school
                ES=1.22            ES=0.41            =-0.24          ES=-0.19
                (0.85, 1.59)       (0.08, 0.74)       (-0.59, 0.11)   (-0.44, 0.07)
How effective is early
intervention?
We k
W know:
 Efficacy of some elements and types of early
  i        i             d     hi     i   l
  intervention: structured teaching, visual cues,
  build communication skills, parent training,….
We don’t know
          g                 p
 How to generalise the impact for ASD
 Which approaches for which parents &
  children
 How to combine communication intervention
  and management of difficult behaviours
Evaluation: Cognitive Behaviour Therapy

    Sofronoff et al 2005
                                 Beating Anxiety
                                  Together 2009-11
                                 Group, 6 weeks, plus
                                  parent group
                                 Follow up to 12 months
   Ch lf t et al 2007
    Chalfant t l                               9 13
                                  RCT n = 36, 9-13
    group, 12 weeks               years
   Wood t l
    W d et al 2009
    individual, 16 sessions
Psychopharmacological
management
    No curative treatment
    Co-
     Co-morbidities
        Epilepsy
        Hyperactivity
        Anxiety
        Obsessive-compulsive disorder
        Depression
    Maladaptive behavioural disturbance
    Minimal role in overall management
       y
Efficacy/ Effectiveness of interventions
in ASD

   Children show highly variable symptom profiles &
    uneven dev. across skills
               (Lord et al 2005; Marcus, Kune & Schopler, 2005)
   Fluctuations from day to day (Herbert et al 2003; Sandler
    2005)
        )
 Highly variable in response to intervention
“currently unable to predict which children will
          dt     ti l t      t   t    h t
  respond to particular treatments, what
  intensity of Rx might make a difference, &
  what behaviours the treatments might affect”
                                      g
    (Kasari 2002)
Diagnosis in adolescence &
adulthood

   ~1% prevalence adults (Brugha et al 2009)
   42% Child D     l     t Centres offer assessment
               Development C t           ff         t
    to adolescents (NAP-C UK survey 2008)(Palmer et
    al, 2010)
            )
   NAO (2009)
   Autism Act (2009); Adult Autism Strategy (2010)
   ‘What You Need to Know’ NAS (2010)
   Lack of transition plans to adult services
   O l 14 registered adult ASD di
    Only       i t d d lt                ti      i
                                  diagnostic services
    across UK
Adolescents & adults with ASD
assessment process
   Existing diagnosis
       Transition to adult services
       Service provision and resources?
       Support for achieving appropriate levels of
        independent living?
       Acceptance of lifelong neurodevelopmental needs
                re-
        Review; re-assessment; changing circumstances
   New diagnosis?
       Autism/ ASD/ASC
       New additional diagnoses/ re-evaluation of needs
   Equality of Access to services
Is there an increase of
difficulties in adulthood?
   Most follow-up studies report that 30- >40%
       p      p                     p
    of participants show marked improvements in
    late adolescence/early adulthood
   Over time:
       Increases in verbal IQ
       Improvements in self awareness and self control
       Decreases in autistic symptomatology- social,
        communication and rituals/obsessions
       Wide range of individual variation
       **Rituals/stereotyped behaviours & anxiety problems
        major impact on outcome for some (irrespective of IQ)**
                                                                  32
Outcome in UK studies
p         pre
published p and ppost 1980
         60
     %
         50

         40

         30
                                                           Pre 1980
         20                                                Post 1980
         10

         0
              Good/fair   In work   In own   In hospital
              outcome                home
Adult outcome:     (Howlin et al 2004)




                 58                68 indivs; NvIQ>50


   22     19


  Good   Fair   Poor
What are the benefits of recognition of
autism/ASD/ASC diagnosis in adulthood?

   Problems (& strengths) are recognised
                            care,
    Identification of social care self help &
    independence support and skills development
                                 children s
    needs (once left school & children’s services)
   Mental health/ psychiatric services:
       high t f co-       bid    t l h lth     bl
        hi h rate of co-morbid mental health problems
                         (mis-
        Explain behaviour (mis-diagnosis)
                 I Exist
The message from adults with autism
     2008 National Autistic Society (NAS)
      Thinking differently about autism campaign
                 The Autism Act
The Cheryl Gillan Autism Bill passed its final reading in
the House of Lords on 22 October 2009 and received
royal assent and became the Autism Act 2009.

It is the first disability-specific law in the UK and marks
a significant milestone in the campaign to ensure people
with autism receive the support and services they
deserve.

Th Autism Act will give l
The A ti   A t ill i legal f          to   t f the Adult
                              l force t parts of th Ad lt
Autism Strategy. This will be done through statutory
g              published by December 2010.
guidance to be p            y
Management for adults with
ASD
   Multi disciplinary approach & Multi agency (social services,
    housing, voluntary) (essential)
                     co-                                  health,
    Management of co-morbidity (community mental health crisis
    teams)
                     admissions,
    Avoid hospital admissions until more “autism friendly” unit or
                              necessary.
    specialized units unless necessary
   “at present few psychiatric units provide the necessary settings
    or staffing levels to prevent conflicts or to protect the person with
    theses disorders from bullying & harassment” (RCPsych report)
Management of mental health
needs for adults with ASD
   Recognition, assessment & diagnosis
   Non-p           g
    Non-pharmacological interventions
       Psycho-education: education; social skills training; social
        care support, housing; employment opportunities
       Modified psychotherapy: behavioural, CBT
   Pharmacological interventions
       Atypical antipsychotics
       SSRIs
Summary of needs for
ASD/ASC across the lifespan
   Improve recognition by social, health, education &
    employment services of needs of indivs with autism
    (across all ages and levels of ability including those who
    are more able)
      p        p                                 p
    Improve options for transitions across lifespan
   Seek better ways of improving social interactions (social
    skills groups; befriending schemes)
   Provide for emotional needs especially of more able
    individuals
   For families identify opportunities for planning towards
    supported and semi/independent living to ‘reduce’
    pressure on parents/families
                  “ASD-
    Create more “ASD- friendly” environments                 41
Create an ASD/ASC aware
environment w understanding of:

   Need for visual cues
   Need for clear feedback
   Verbal expression may give misleading
    impression of t
    i       i           level of comprehension
                 f true l   l f        h      i
     p
    Importance of routines & p              y
                               predictability
   Problems in making decisions (even very
    simple choices)


                                                  42
Need to change our images of
autism:


                 p
    Need to develop
    programmes
    throughout the life
    span




                               43
 Need   to focus on changing
  others
  others’ understanding &
              ,
  behaviour, at least as much as
  trying to change the person
    ith
  with ASD
             incl.
 Lifespan incl retirement & old
    g
  age
                                   44
            g
Where do we go from here:
Challenges & Conclusions
   Lifelong developmental disorders- a
                      handicap?
    challenge or a handicap
   Ongoing & changing profile of skills & needs
    especially in relation to transitions (across
    lifespan); individuals & families
   Co-
    Co-morbidity
     Rates are high when compared to gen. popn.
       & other at risk groups
     ASD/ASC under-diagnosed in individuals w
       other diagnoses
            g
Where do we go from here:
Challenges & Conclusions
   Resources for individuals across the lifespan
           y                       y years- needs of
     Early identification in early y
      elderly adults
     Effective treatments & interventions
     Social, emotional, health & mental health
      needs
     Increase opportunities for social inclusion/
      ‘ASC’ friendly environments
                   y
     Education, employment, accommodation &
      leisure opportunities, retirement and support
               pp          ,                   pp
            g
Where do we go from here:
Challenges & Conclusions for Europe
   Training
       professionals; affected individuals & their families
   Recognition, assessment & diagnosis
       Screening tools?
       Diagnostic measures?
       Individual & family profiling?
   Intervention planning
       Individual
       Family/ carers
       Community
            g
Where do we go from here:
Challenges & Conclusions for Europe
   Research initiatives
        g               p
     Urgent need to expand the evidence
   Europe wide priorities
   Specific needs for regions/ nations

   Final thoughts:
     Most countries reduction in institutional care
      Medication
     M di   ti
Thankyou !