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 !