Outcome for adults with autism- how can the future be improved? Patricia Howlin

Transcription

1 Outcome for adults with autism- how can the future be improved? Patricia Howlin

2 Huge challenges Cost of supporting people with autism & their families in the U.S. alone greater than the entire GDP of 139 countries across the world 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 *Buescher, Cidav, Knapp, & Mandell, D.. Costs of autism spectrum disorders in the United Kingdom and the United States of America. JAMA, 2014

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

4 Shattuck et al. (2012) Of 11,000 studies on ASD ( ) only 23 on interventions/ services for adults Bishop- Fitzpatrick et al. (2013) Review of 1217 papers on adults ( ) only 13 on psychosocial interventions meeting adequate experimental criteria The Challenge and Promise of Autism Spectrum Disorders in Adulthood and Aging: A Systematic Review ( ) ( Wright, Brooks, D Astous & Grandin, 2013)

5 What happens in adulthood?

6 Seven decades ago The results of the follow-up after about 30 years do not lend themselves for statistical considerations because of the small number involved. They do, however, invite serious curiosities about the departures from the initial likeness, ranging all the way from complete deterioration to a combination of occupational adequacy with limited, though superficially smooth social adjustment. (Kanner, 1971)

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 40 year follow-up study- (Howlin, Moss, Savage & Rutter, 2013; 2014) 60 individuals; all PIQ 70 in childhood Mean age first seen= 6.6 yrs (3-13 yrs) Ist follow up- mean age= 29 years (16-45 yrs) Current follow-up- mean age 44 years (29-64 yrs) Diagnosis confirmed with ADI/ADI-r at follow-up

10 Improvements in autism symptoms over time- but fewer improvements in independent living, work & relationships (Howlin, Rutter et al., 2013/4) 45 ADI Child-adult Diagnostic ADI Current ADI-R Social outcomes years Social Mean age 29 Mean age 44 Total ADI algoritm score Communication Repetitive % Semi/independent With parents In work Has friends Ever close relat/ married

11 Summary: Autism symptoms declined Only ~ 28% in work; 10% close relationships; 26% living semi/independently. IQ in most cases remained very stable (with some increase in verbal IQ) Minority showed significant decline Poor outcome related to more severe deficits in early social development & language (ADI scores); presence of epilepsy; significant behavioural disturbance.

12 In conclusion: 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)

13 Adult follow-up studies: Overall social outcomes ; (Howlin & Moss, 2012) % Poor/Very poor Fair Good

14 Effects of early intervention??

15 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. Magiati et al; 2011; Kasari et al. 2012) but group differences small; individual baseline characteristics more significant

16 Most follow-up studies= participants still meet 2/3 DSM- IV domains. Few have Good outcomes BUT: Optimal outcomes (n=34; Fein et al. 2012; Orinstein et al., 2013; 2014, 2015) Very positive outcomes (~ 9% Anderson et al., 2014) No evident signs of autism or mental health problems. But some subtle differences in social interaction & cognition that interfere with completely independent/successful functioning (Farley & McMahon, 2014)?Differences in diagnostic practices in different centres??impact of early intervention?

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 Effects of adult intervention?

19 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)

20 For example: studies of behavioural interventions Search results and sift Total sift = 9522 Total psychosocial papers = 654 Behavioural therapies papers= 80 N meeting inclusion criteria = 1

21 NICE: Core autism deficits Communication: no clear evidence for any specific intervention Augmentative communication: needs systematic research. Facilitated Communication: not recommended

22 NICE: Core autism deficits Social skills: 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 reallife settings Spain & Blainey, 2015: some limited evidence that may improve social knowledge and understanding, reduce loneliness and alleviate co-morbid psychiatric symptoms.

23 NICE: Core autism deficits 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

24 NICE:Adaptive skills Most studies of individuals with intellectual disability Some improvements in daily living skills using structured training programme. Other specific interventions (e.g weight control; iphones) Limited evidence for impact on challenging behaviour

25 NICE: Pharmacology and other interventions Medication: 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 evidence for : exclusion diets, vitamins, minerals and supplements, chelation, hyperbaric oxygen therapy, testosterone regulation etc. etc.

26 Oxytocin? Some research suggests oxytocin may optimize the social circuitry underlying social deficits in autism; enhances reward, motivation, and learning. However, evidence of therapeutic benefits limited.? Value as adjunct to social skills training? (Hickey & Guastella, 2016; Guastella et al., 2015).

27 Improving Mental Health

28 Emotional & behavioural problems begin in childhood Up to 70% of school age children have clinical levels of psychopathology: Anxiety, especially social anxiety Disruptive/ antisocial; ADHD Social withdrawal, self- absorption OCD Phobias Brereton et al.(2006) Leyfer et al., (2006) Simonoff et al.(2008) van Steensel et al. (2011) 28

29 In adulthood : Mental health problems increase Increase in mental health diagnoses with age: USA: 42% of adolescents; 51% of adults UK: 22% developing new psychiatric problems (mainly in late teens/ early adulthood ) 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 (Seltzer et al., 2009; 2010; Howlin et al., 2004;Hutton et al., 2009) 29

30 Problems of diagnosis Poor agreement between clinical diagnoses and questionnaire information (Buck et al. 2014: 35% caseness on clincal diagnosis; 69% on questionnaire ratings) Diagnosis of comorbid psychopathology complicated by overlap between ASD and symptoms associated with other mental health problems (OCD or ADHD) Presentation may also be atypical (Hutton, et al., 2008) (e.g. onset of depression characterized by an increase in stereotyped and ritualistic behaviours, or in aggression and/or self-injury).

31 Problems of diagnosis Diagnostic rates depend on measures used; diagnostic systems used (ICD vs DSM); age & IQ of cohort No well validated measures specifically designed for; diagnosing autism in adults! diagnosing mental health problems in adults with autism(reliance on child measures or non-id adult measures) Poor agreement between self & informant reports Self-report measures not appropriate for individuals who have difficulties in describing their inner thoughts and emotions Informants (such as caregivers) may not be able accurately to report on the internal states of the adult with ASD.

32 Despite inconsistences in reporting: Frequency of major psychiatric disorder high- (25%- 30%, to > 75%; Hutton et al., 2008; Mazzone et al. 2012; Moss et al., 2015; Joshi et al., 2013). Mostly associated with anxiety, depression, OCD Tend to emerge in mid-late teens/early adulthood Often related to environmental pressures (college; jobs, leaving home; loss of family members; lack of support; lack of suitable daily programme).

33 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)

34 NICE: Mental health interventions In adults without autism: facilitated self-help and CBT are considered effective interventions for mild to moderate depression and anxiety. The development of novel methods for the delivery of facilitated self-help and/or the adaptation of CBT for adults with autism and a coexisting anxiety disorder could make effective interventions more widely available.

35 CBT Several studies indicate success in mainly non-clinical settings. But : Short term follow-up only. Mainly child/adolescent participants 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? 35 (reviews: Ho et al., 2014; Spain et al., 2015)

36 CBT- meta analysis (Spain et al., 2015) Behavioural, cognitive, and mindfulness-based techniques moderately effective for co-morbid anxiety and depression symptoms. But: sample sizes small, participant characteristics vary widely, and psychometric properties of self-report outcome measures uncertain. Need to investigate acceptability & effectiveness of a range of CBT interventions & identify which adaptations optimise effectiveness.

37 Hesselmark et al. (2014) Compared CBT with recreational activity programme (n=68; 36 weeks x 3hr) Both groups reported > quality of life post-treatment But: No difference between interventions. No amelioration of psychiatric symptoms observed although self ratings of symptoms were more positive in CBT group.. Similar effects may be due to the common elements: structure and group setting.

38 Contra-indications of CBT in ASD Difficulties of introspection & in expressing feelings (even of severe physical pain). Visual & concrete thinking style predominates Abnormal emotional responses; unusual ways of reporting anxiety or distress; difficulty modulating emotional responses (everything fine or disastrous) Rigidity of thought processes/beliefs (All or nothing thinking style) Poor generalization Excessive perfectionism makes homework exercises difficult, time consuming and stressful

39 Successful research trials with children emphasise following modifications Need specifically to address ASD symptoms & the impact of these I.e. need to treat social & communication problems, ritualistic & stereotyped behaviours/ thought patterns, additional behavioural problems BEFORE CBT for anxiety etc. commences Also need to change environment (depression/anxiety unlikely to improve if life is unrewarding, threatening, stressful or isolated)

40 Therapygenetics: the 5HTTLPR and response to psychological therapy (Eley et al.,molecular psychiatry 2012) Response to CBT X 5HTTLPR (serotonin) genotype See also Lester & Eley, Using genetic markers to predict response to psychological treatment for mood and anxiety disorders Bakker et al. (2014) Therapygenetics in mindfulness-based cognitive therapy;

41 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) (Esbensen et al., 2009; Hutton et al.,2008; Stewart et al; 2009)

42 Improving Social Integration

43 Start earlier- adolescence just too late Base intervention in real life settings Modify environment as well as individual with autism Evaluate possible adjuncts to therapy e.g. oxytocin Ayeung et al.(2015)- oxytocin increases eye contact in typical and ASD participants (especially in those who make least eye contact initially)

44 Using special interests Kanner (1973)- follow-up of 96 individuals Eleven are now mingling, working and maintaining themselves in society. They made the compromise of being, yet not appearing, alone and discovered means of interaction by joining groups in which they could make use of their preoccupations as shared hobbies in the company of others... They earned recognition by their detailed knowledge of specific topics Life thus lost its former menacing aspects.

45 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?

46 Improving job prospects Asperger(1952): In the vast majority of cases work performance can be excellent, and with this comes social integration A particular line of work often grows naturally out of their special abilities.. But very few actually make it- 15% in professional/skilled non-manual work; 13% unskilled or manual jobs; 17% sheltered/voluntary work; 55% never worked (Howlin et al., 2013)

47 NICE guidelines: Supported Improvements in: employment job finding and job retention quality of life cost effectiveness (compared with non-specialist schemes or standard care) 23% 20% 57% (Garcia Villamisar et al., 2000/02/07; Howlin et al., 2005; 2008; Lawer et al., 2009; Mavranezouli et al., 2013)

48 NICE= Also consider: Group or individual based leisure activity programmes (e.g. Garcia Villamisar et al, 2010)- Positive impact on quality of life and emotion recognition. Group based or individual social learning programmes including modeling, peer feedback, discussion & decision making; explicit rules specific strategies for dealing with difficult social situations (For adults without intellectual disability)

49 Improving Quality of Life van Heijst & Geurts (2015) As in other age groups yrs. olds with ASD have fewer friends, poorer physical health, fewer leisure activities etc. than non- ASD. Nevertheless, no real evidence of decline with age or any relationship between QoL and IQ or autism severity. BUT: N very small (24) No autism- specific QoL measures we should not seek to impose typical quality of life norms.

50 ASD quality of life Higher levels of social functioning may come at the cost of poorer mental health; lower QoL (Moss, et al., 2015) Person-environment fit is what matters (Henninger & Lounds Taylor, 2013) Autism-Friendly Environment rating scale (Billstedt et al., 2011) autism specific knowledge /training among caregivers; structured & individualised programmes; occupation or everyday life activity appropriate to level of capacity.

51 Improving Extent, Range & Quality of Adult Provision Recent reports focus on the inadequacy of mental health services for young people, especially at times of transition inadequate, Failure to provide appropriate support from social/employment services

52 Current support tends to be Expensive: crisis management based (involving mental health; forensic; residential services) & Uncoordinated Or Non-existent- with heavy reliance on family supporters and often incipient threats from benefits agencies etc.

53 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.

54 Improving Quality of Adult ASD Research Need systematic studies on the characteristics (behavioural, neuropsychiatric, and medical) associated with ageing in autism, and potential interventions, both individual and societal, that may improve outcome and quality of life. (Bishop- Fitzpatrick et al., 2013; Piven et al.,2012) If the advances in comprehensive treatment programmes for very young children can be applied across the life span, then children with autism now growing up may face a more positive future.