Preparing for adult life. Turin, December 2016

Transcription

1 Preparing for adult life Turin, December 2016

2 Why do we need to focus more on adult life?

3 Huge challenges: Combined prevalence of autism in adults of all ages in England was 11/1000 (95% CI 3-19/1000) Costs the UK more than heart disease, cancer and stroke combined: 32.1bn per year, compared to cancer ( 12bn) heart disease ( 8bn) and stroke ( 5bn). Much of this cost related to adult needs Brugha, et al.,.epidemiology of autism in adults across age groups and ability levels. BJPsych 2016 Buescher, et al.,costs of autism spectrum disorders in the United Kingdom and the United States of America. JAMA, 2014 Leigh & Du (2015). Brief report: forecasting the economic burden of autism in 2015 and 2025 in the United States. JADD (2015)

4 USA Cost of autism in the U.S. alone greater than the entire GDP of 139 countries across the world Leigh & Du, 2015: Estimate that direct medical, nonmedical, and productivity costs combined will be $268 billion (range $162 $367 billion; % of GDP) for 2015 $461 billion (range $276 $1011 billion; % of GDP) for figures equivalent to those for diabetes and attention deficit and hyperactivity disorder (ADHD) and exceed the costs of stroke and hypertension. By 2015 predict that ASD costs will likely far exceed those of diabetes and ADHD by 2025

5 Despite dramatic rise in diagnoses very little research on adults; few intervention studies; & quality low Edwards et al., 2012

6 What happens in adulthood?

7 Transition to adulthood: Positive aspects Overall reduction in autism symptomatology from childadulthood (majority show < scores on ADI; only minority worsen) Decrease in repetitive and stereotyped behaviours in older adults (22-50 years) Improvement in social reciprocity in adolescents/ young adults (10-21 years) Decrease in problem behaviours: some follow-up studies = 30 to >40% of participants show marked improvements in late adolescence/early adulthood (Kanner, 1973;; Howlin et al., 2013/14; Farley et al., 2009; Orsmond et al. 2013; Magiati et al., 2014; Roux et al., 2014; Seltzer et al., 2009; 2010; Taylor & Mailick, 2012)

8 Transition to adulthoodnegative aspects Compared with peers with intellectual, emotional, behavioral or learning disabilities, young adults with ASD Have low rates of social inclusion and employment (~60% in sheltered workshops/day activity centres ) Are significantly more socially isolated; more likely never to see or be called by friends, or be invited to activities Day activities lower quality than educational activities in school Adults of normal IQ significantly LESS likely to have a structured day time activity than those with intellectual impairment (Howlin et al., 2013; Orsmond et al. 2013; Magiati et al., 2014; Roux et al., 2014; Seltzer et al., 2009; 2010; Taylor & Mailick, 2012)

9 Outcome in adulthood generally poor Despite improvements in intervention and educational programmes for children few improvements in adult outcomes over recent decades (Howlin & Moss, 2012; Henninger and Taylor, 2013; Magiati et al., 2014; Steinhausen et al. 2016)

10 Social Outcomes (Steinhausen et al., 2016; 15 studies, 828 individuals)

11 In adulthood : Mental health problems increase Increase in mental health diagnoses with age: (estimated rates of psychiatric problems range from ~40% to over 90%) Increase in use of medication over time USA study: 64% of adolescents; 88% of adults on at least one medication;18% of adolescents, 49% of adults on 3 or more meds (Reviews: Davis et al., 2011; Levy and Perry, 2011; Mannion et al., 2014; Mazzone et al., 2012; Moss et al., 2016) 11

12 Services decrease Large scale, US based, cohort studies: compared with peers with intellectual, emotional, behavioral or learning disabilities, young adults with ASD significantly more socially isolated; more likely never to see or be called by friends, or be invited to activities. (Orsmond, Shattuck et al., 2013) Longitudinal studies: Adult day services significantly poorer than schoolage services. Provision particularly poor for adults of normal IQ. (Taylor and Seltzer, 2011)

13 Types of mental health problems Most common: depressive & anxiety-related disorders (including phobias and obsessive-compulsive disorder); ADHD, Rates of schizophrenia/severe psychosis relatively low. But- reported ranges vary widely. Anxiety 42% - 56%. Depression 17% - 70%; Bipolar disorder 8% - 27% ADHD symptoms 28% - 65%, (Joshi et al. 2013; Gillberg et al., 2016; Gotham et al., 2015; Lever & Geurts 2015; Buck et al., 2014; Roy et al., 2015; Moss et al., 2015; Russell et al., 2016)

14 Interventions

15 Effects of early intervention??

16 Early Intensive Behavior Intervention saves up to $2.500,000 per individual over the lifetime. Jacobson et al. (1998) (Cf also Sanober et al., 2006 Chasson et al., 2007) In fact : no evidence of long-term impact or significant improvements in functioning in later childhood/adolescence Most follow-up studies maximum of 12 months initial group differences tend to reduce with time. Some positive findings after 5-7 years ( e.g.estes et al., 2015;;Kaale et al., 2014; Kasari et al. 2012; Magiati et al; 2011 Pickles et al, 2016) but group differences small

17 Some retrospective data (Anderson et al, 2013;Orinstein et al., 2014) suggest adolescents/ young adults with optimal outcomes more likely to have had access to behavioural interventions but outcome not associated with programme intensitymay be family factors instead

18 Accurately predicting the future remains a challenge

19 Lord et al; 2015 Developmental trajectories

20 Effects of adult intervention?

21 Recent reviews % of adult studies low; % of adult intervention studies even lower; % of high quality adult studies negligible. National Institute for Health and Clinical Excellence (NICE) Guideline on Recognition, Referral, Diagnosis and Management of Adults on the Autism Spectrum (>9,500 studies) Agency for Healthcare Research and Quality (AHRQ) Lounds Taylor et al. Interventions for Adolescents and Adults with ASD. Comparative effectiveness Review No 65 (>4,800 studies)

22 NICE: Communication No clear evidence for any specific intervention Augmentative communication: needs systematic research. Facilitated Communication: not recommended

23 NICE: Social skills deficits : Programmes very variable; mostly higher IQ groups; little generalization or impact on social/ emotional understanding; some studies = positive impact, others = no effect. Little evidence of improved functioning in real-life settings Spain & Blainey, 2015: some recent, but limited evidence that may improve social knowledge and understanding, reduce loneliness and alleviate co-morbid psychiatric symptoms.

24 Ritualistic/stereotyped behaviours: Single case/small group studies indicate the potential effectiveness of behavioural strategies in this area But: few adequate group comparisons or RCT trials- insufficient evidence on which to base any specific recommendation

25 Pharmacology and other interventions NICE : Do not use to manage core autism symptoms or for behavioural management For challenging behaviours first line of intervention should be environmental/psychological interventions. If medication needed, prescribe by specialist; monitor regularly; discontinue if no response in 6 weeks No consistent evidence for : exclusion diets, vitamins, minerals and supplements, chelation, hyperbaric oxygen therapy, testosterone regulation; oxytocin etc. etc.

26 Interventions to improve mental health and quality of life

27 Cognitive Behaviour Therapy (CBT) Several studies indicate success in mainly non-clinical settings. But : Short term follow-up only. Outcome measures rely on parental reports/analogue measures, self reports show less change. No real life assessments- do participants do better in social situations/ office etc.? Huge range of intervention strategies- which are most effective? (reviews: Ho et al., 2014; Spain et al., 2015; Maddox et al., 2015) 27

28 Reduce stress Onset of mental health problems in adulthood often related to environmental pressures (college; jobs, leaving home; loss of family members; lack of support; lack of suitable daily programme). Bishop-Fitzpatrick (2015, 2016) ASD adults experienced significantly more stress than community controls Levels of stress predict overall social functioning and social disability over and above age and educational level Focus on improving adaptive behaviours and recreational activities may reduce stress more than focus on social activities.

29 Improve quality of daily life. Leisure activities Positive impact on quality of life and emotion recognition (Garcia Villamisar et al., ; 2016; Bishop Fitzpatrick et al., 2016) Interventions to improve adaptive skills, maternal-child interactions, neighbourhood facilities, and recreational (not social) daily activities may also enhance QoL & mental health (Bishop Fitzpatrick et al., 2015/16) Supported employment Improvements in job finding and job retention; quality of life; cost effectiveness (compared with non-specialist scheme) (Garcia Villamisar et al., 2000/02/07; Howlin et al., 2005; 2008; Lawer et al., 2009; Mavranezouli et al., 2013)

30 Environmental supports Few systematic studies of environmental factors associated with mental health & behaviour problems in adults with ASD. Several studies suggest links with stress associated with major life events or transition points (e.g. leaving school, coping with exams/ college /employment) Also: Lack of structure (e.g. when leave school) Disturbances in home/residential life (e.g. sibs leaving home; death of relatives)

31 Improve access to work (Mavranezouli, et al., 2013) Other 40 23% 30 Admin 20% Total jobs=203 Computing/ technical 57%

32 Research suggests that almost 30% of individuals with ASD across the IQ range meet criteria for a savant skill or an exceptional cognitive skill (Howlin et al. 2009) However, most fail to make use of this potential for work, social integration How can we facilitate this- and avoid individuals getting in trouble because of their special skills?

33 Improve Social Integration Start earlier- adolescence just too late Base intervention in real life settings Modify environment as well as individual with autism

34 Understanding factors associated with adult mental health No consistent strong links with any individual characteristics (IQ, gender, age, social outcome) Association with external factors? Family environment Major life events or transition points (e.g. leaving school; coping with exams/ college /employment) Lack of structure post-school Disturbances in home/residential life (e.g. sibs leaving home; death of relatives)

35 Provide appropriate environment Person-environment fit is what matters (Henninger & Lounds Taylor, 2013) Autism-Friendly Environment (Billstedt et al., 2011) autism specific knowledge /training among caregivers structured & individualised programmes occupation or everyday life activity appropriate to level of capacity (not everyone can live independently, or cope with full time work).

36 Need: Greater awareness and training - of health, social & employment personnel about needs, risks and difficulties of individuals with autism; especially those who are more able. Individualised care plans : for many support may need to be only low intensity and/or intermittent; but always needs to be available. Reduce pressures on elderly parents; siblings. Encourage local community support, understanding and inclusion.

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