Autism spectrum conditions across the life-course a public health perspective

1. Autism spectrum conditions across the life-course a public health perspective Traolach (Terry) Brugha University of Leicester 2nd International Conference on Autism Spectrum Disorders, NUI, Galway, June 11 & 12, 2013

2. Beginning with some... • Values • Perspectives • Myths

3. “All families and persons affected by mental ill health should at all times be afforded equal rights, entitlements and opportunities that are available to any other member of civil society and should be empowered to participate in the community in which they live”.

4. Autism perspectives • Autism is increasingly seen as one of the most severe neurodevelopmental outcomes in a range of interrelated forms or conditions including most notably intellectual disability, but also epilepsy, ADHD, and emotional difficulties. • These conditions may be better understood in the wider population in adulthood by the time that any other major mental health problems such as bipolar disorder and psychosis have emerged fully.

5. Autism myths... • Autism is a childhood disorder • At least half of all people with autism have intellectual disability • Autism is always severely disabling • All we need to know about autism we can learn from people with the diagnosis

6. ‘1% of people have autism’ • How do we know that? • What does it mean? • What are we doing about it? • What can we do about it? • What does it mean for children and adults already recognised and diagnosed? • What does or could it mean for people who are unrecognised, undiagnosed?

7. Population sciences • Epidemiology is the study of diseases in populations - their frequency and outcome, associations and determinants • Action based on epidemiological knowledge leads to public health – hence public health medicine and public mental heath • and should influence how health and social care services are planned and commissioned

8. The contribution of epidemiology • Estimates from surveillance and case finding • Case findings in childhood • Case finding in adults • APMS 2007-2011 and 2014... • Two phase design with self support screening and verification using ADOS Module 4 & DISCO/ADI-R • Single phase design using ID Register sampling • Suggested overall prevalence of 1% (1/1000) - but what does that mean?

9. Autism is a childhood disorder? • The most exciting/unexpected finding from APMS 2007: autism is found at almost the same rate throughout adult life into old age • See Brugha et al Archives of General Psychiatry 2011. • Largely verified in the ID populatio

10. Autism is a childhood disorder? • Which means that: • Environmental causes of ASD unlikely to be novel • Autism in adulthood is invisible in the community • (verified in the APMS 2007 interviews)

11. At least half of all people with autism have intellectual disability? • Some truth but actually largely untrue! • Verbal IQ, NART OR (95% CI) 0.94 (0.87-0.998) P=0.04 • Prevalence of ASD from APMS 2007 household survey 10 / 1000 but combined prevalence of ASD from APMS and ID extension study after adjusting for missing parts of the population 11-12/1000 • See NHS IC website, Leeds, Autism Survey Report.

12. Autism is always severely disabling? • “Autism in itself has different outcome, not necessarily poor,...” • “Autism per se is probably not a ”severe disorder”; autism makes people ”different”...” • (Gillberg, 2013, http://www.gillbergcentre.gu.se/digitalAssets/1449/1449172_imfar-2013.pdf) • So what are the characteristics of having ASD?

13. Severity – another spectrum? Brugha et al, Archives General Psychiatry, 2011

14. Predictors of presence of ASD People with milder forms of autism are all about us – but their life is not a good one... Brugha et al, Archives General Psychiatry, 2011

15. A public health perspective • Most people alive in the developed world (AKA, most people with autism) are adults and yet until now most knowledge of autism and most research has been confined to childhood. • My particular interest is in promoting the public health of adults with autism through service development and empirically grounded epidemiological research going beyond specialist services into primary care and whole population responses to the challenges posed.

16. Public health implications • A lot of people have ASD but very few are intellectually disabled and unable to care for themselves although most are undiagnosed • Should we provide care and if so how? • In childhood – how can schools help? • In adulthood – which is most of the population in most developed countries – how can colleges and employers help?

17. National autism strategies (England, Wales, Scotland, N.I.) responding to projected need • Education, • health, • care, • employment and • welfare services

18. Legislation NICE Guidelines

19. Implications for psychiatry • All primary care physicians should be able to quickly and appropriately suspect autism in their practice population • And should know some quick and low cost strategies for immediately helping those affected and their families without having to wait for specialist advice. • Surely therefore all psychiatrists and neurologists will need be able to readily recognise and quickly diagnose autism and support primary care?

23. Autism and primary care • Stepped care – a measured response for all - intensive care only for the most severe, complex (for example children and adults with multiple comorbidities) • Most affected adults may only be visible in primary care • If 1 in 100 of a GP’s practice list are clearly on the autism spectrum – GPs can learn to suspect / recognise examples, undiagnosed and diagnosed • When a crisis or ongoing problems in living and or behaviour present a GP can consider recording a clinical suspicion of an ASD and acting on it using knowledge of ASD and local practical solutions • And can we draw lessons from the development of primary care led management of depression?

24. Education and employment • Autism can bring the same eligibility to support through education – provided autism (or any associated disability) is recognised • Many people with autism will need support within employment or disability welfare benefits if unable to sustain a paid employment role • People responsible for supporting adults in their work role or in seeking employment, as part of a national autism strategy, also need to be able to recognise and consider the possibility of an ASD form of disability.

25. Concluding thoughts • To understand autism fully we also need to understand the majority who are invisible • 1% of the population do not have severe and complex autism (with comorbidity) • There are people all around us in child and adulthood whose lives are blighted by the invisibility of their disability who we can help • Recognition is not rocket science – all the caring professions must get to grip with autism!

26. Autism spectrum conditions across the lifecourse a public health perspective Go raibh mile maithagaibh Thank You!