Adults and Autism Spectrum Disorder

1. Adults and Autism Spectrum Disorder Dr Linda O’Rourke, Consultant Psychiatrist & RCSI Senior Clinical Lecturer MD in Neurodevelopmental Psychiatry, AsIAm Community Support, Ennis 10.05.2019

2. Agenda • Why might a person reach adulthood without being diagnosed. • What features may warrant further assessment. • What an assessment entails. • Mental health and autism. • Treatment of mental health conditions.

3. Autism Spectrum Disorder

4. Autism Spectrum Disorder A pervasive triad of impairments in • Social skills • Communication skills • Repetitive / ritualised behaviours • First evident in infancy • Persisting into adulthood

5. Adults & Autism Spectrum Disorder • Prevalence 1.55% • M:F ratio 2-4 : 1 • Without an intellectual disability= 70% • Comorbid mental illness = up to 80% NDA, 2017

6. Adults & Autism Spectrum Disorder • Prevalence 1.55% 46,158 Irish adults aged 18-64 • M:F ratio 2-4 : 1 • Without an intellectual disability= 70%  32,310 Irish adults • Comorbid mental illness = up to 80%  up to 25,840 Irish adults (Ennis: 25,276) NDA, 2017

7. Adult Diagnosis

8. Autism; Diagnosis Childhood: • Autism is most frequently diagnosed in childhood (Cath 2008, Netherlands) • Autism is most commonly diagnosed before age 5 years (White 2011, USA) Adulthood: • Autism without intellectual disability & higher functioning subgroups are most often diagnosed later in life (Strunz 2014 Germany, O’Rourke 2016 England) • 50% of those with Asperger’s syndrome remain undiagnosed into adulthood (Roy 2015, Germany)

9. Autism; Diagnosis, Females • Have better coping skills despite equivalently autistic traits • More desire to have friends and fit in • May mask social deficits by imitating other • Less severe repetitive and restricted interests • Restrictive interests may be more socially acceptable therefore less clear to diagnosticians • Higher incidence of disordered eating in females  diagnostic overshadowing Sign 145, Scotland

10. Why is late/missed diagnosis relevant? Adult outcomes are relevant: • Majority of autistic adults are single & living with their parents • 66-91% are unemployed • 56-95% have been bullied • 40% have been sexually or financially exploited Health Economics: • Lifetime cost US = $1.4million, UK = £920,000 (90% of this cost is incurred in adulthood) (NDA, 2017) • Childhood cost Irl = €28,464.89 per child per family per year = €512,368 from birth to 18 years (Roddy, 2018)

11. Why is late/missed diagnosis relevant? • Autistic adults have typically completed education before receiving a diagnosis, thus possibly leading to poorer academic attainment (White, 2011) • Longer duration of social, emotional, financial and stress burden can result in mental health crisis (O’Rourke, 2016) • Mortality rates are 2 to 5.6 times higher; especially autistic females, those with comorbid epilepsy and those at extremes of IQ (Howlin 2000, Barnhill 2007, Howlin 2012)

12. When to Consider an Autism Assessment…. • Persistent difficulty in social interaction • Persistent difficulty in social communication • Stereotypic (rigid and repetitive) behaviours • Resistance to change • Highly restricted or repetitive interests • Problems staying in education or finding & sustaining employment • Differing diagnoses from clinicians • Not responding / partially responding to treatment for current diagnosis

13. When to Consider an Autism Assessment…. • Persistent difficulty in social interaction Awkward interaction with others Poor awareness of social norms Lack of social chit-chat or ‘small talk’ Lack of emotional response to another’s verbal and nonverbal overtures Lack of spontaneous conversation or sharing of personal information Difficulty initiating or sustaining social relationships Absence of close sharing friendships or relationships Few or no sustained relationships

14. When to Consider an Autism Assessment…. • Persistent difficulty in social communication Lack of eye contact or poor integration of gaze with content of speech Restricted or inappropriate range of facial expression Lack of emotional expression – not naming emotions Stilted, pedantic use of language Literal interpretation of what is heard Non-reciprocal, one-sided interaction

15. When to Consider an Autism Assessment…. • Stereotypic (rigid and repetitive) behaviours Apparently compulsive adherence to specific ‘non-functional’ routines or rituals Stereotyped and repetitive motor mannerisms such as hand/finger flapping or twisting or complex whole body movements Stimming Highly restricted or repetitive interests Highly unusual interests (less so for females)

16. When to Consider an Autism Assessment…. • Differing diagnoses from clinicians • Not responding / partially responding to treatment for current diagnosis ‘Atypical presentation’ ‘Difficult to diagnose’ Can result in distress or meltdowns being interpreted as depression, bipolar affective disorder, anxiety spectrum disorders, schizophrenia or personality disorder

17. What an Autism Assessment entails • A diagnostic assessment, alongside a profile of the individual’s strengths and weaknesses, carried out by a multidisciplinary team which has the skills and experience to undertake the assessment, should be considered as the optimum approach for individuals suspected of having autism • Specialist assessment should involve a history-taking element, a clinical observation/assessment element, and the obtaining of wider contextual and functional information. • Debate around tiered model of assessment Assessment (NICE, SIGN, HSE Review) 1) Screening (IQ appropriate, self and carer)  AQ10 (self or with GP) 2) Clinical History (DSM/ICD) 3) History of functioning (outside clinical setting) 4) Collateral History (Developmental Hx, ADI-R) 5) Observation (Mental state, ADOS-G) 6) Individual Profiling (IQ, Verbal mental age, Speech language & communication assessment, Neuropsychological profile, Adaptive skills, Sensory profile, Physiotherapy) 7) Understanding of how specific skill deficits or sensory problems contribute to particular behaviour patterns 8) Biomedical Investigations (Genetic testing, audiology, vision) but MRIB and EEG are not routine 9) Assess for co-morbid physical and psychiatric diagnoses 10) Obtain consent for liaising/sharing information with other services (educators, employers)

18. Autism & Mental Health

19. Autism & Mental Health • In the past, there was a tendency to attribute all psychiatric symptoms in children and adults to the autism phenotype itself (Lainhart, 1999) • However, it is now recognised that autistic patients suffer from high rates of mental distress and mental illness(Lugnegård 2011, Tebartz, 2013) • Mental Health Teams – public or private, multidisciplinary team; psychiatry, psychology, nursing, OT, social worker, admin.

20. The Psychiatrist • A psychiatrist is a medical doctor specialising in the diagnosis and treatment of mental illness. In ASD, a psychiatrist often forms part of the multidisciplinary diagnostic team • As a trained doctor, a psychiatrist assesses for other potential causes for a patient’s difficulties / illness • Psychiatrists are licenced to prescribe medication

21. Autism & Mental Health (Adults)

22. Autism & Mental Health (Adults)

23. Anxiety Spectrum Disorders

24. Anxiety Spectrum Disorders

25. Anxiety - Support, Intervention & Therapy

26. Mood Disorders

27. Anxiety / Depression - Medication

28. Conclusion

29. 2008 2019…… ‘The first generation, for whom ASD diagnostic services have been present since their early years, is now becoming adults’ ‘This implies that an increasing proportion of persons who seek adult psychiatric services will have been diagnosed as children or adolescents as having ASD’ ‘Many of these patients and their families will expect expertise knowledge of ASD from adult psychiatry’ ‘Psychiatrists working in services for adults will need to be trained to meet these new challenges’ (Nylander, 2008)

30. Thank you.