Behavioural and emotional problems in young children with intellectual disabilities and/or autism: Implications for Early Intervention Richard Hastings Cerebra Chair of Family Research, University of Warwick Monash Warwick Professor, Department of Psychiatry, Monash University, Australia

Neglect of mental ill-health Historically, psychology and psychiatry tended to deny that people with ID might experience mental health problems Psychodynamically-orientated therapists questioned whether people with ID could truly have mental health problems given their intellectual deficits and associated abnormalities in ego development There remains a lack of recognition that underlying mental health problems may partly explain problems that bring people with ID into contact with services

Diagnostic over-shadowing Reiss et al. (1982) coined the term - tendency to inaccurately assess the degree of mental ill health in people with ID compared with people without ID In vignette-based research, this leads to a high level of false negative judgements with the implication that diagnosis may be similarly insensitive Treatment may also be less likely to be suggested when a case is identified with ID Review by Jopp and Keys (2001) - lack of evidence for the bias in actual clinical settings Is this an historical bias?

Existing research Case-control studies typically include referred and self-referred (volunteer) children and families Population-based samples are needed Diagnosis of ID or ASD not always confirmed clinically, by a recognised diagnostic assessment, or some other method Need samples that include clear method for identification of ID/ASD

ONS mental health surveys N= 18,415 children age 5-16 years; population based sample across the UK with high response rate (80% across both surveys – 1999 and 2004) Structured clinical interview used with all children leading to ICD-10 diagnoses (carer interview, plus child interview 11+ and able to participate) Emerson identified a sub-sample with likely ID (N= 641), 3.5% of total sample Emerson & Hatton (2007) compared prevalence of childhood psychiatric disorders in ID and non-ID groups. Found increased risk of comorbidity

Emerson & Hatton (2007)

1 in 7 children with MH problems in the UK also have ID Emerson & Hatton (2007) 1 in 7 children with MH problems in the UK also have ID

Early emergence N = 15,246 from the Millennium Cohort Study Wave 3 Secondary analysis by Totsika, Hastings et al (2011) ID: British Ability Scales 3.07% (n = 479) ASD: parental report 0.92% (n = 143†) Child outcomes: hyperactivity, emotional symptoms, conduct problems (SDQ) † sample weighted

Problems @age 5

Why the differences? Family socio-economic adversity Exposure to negative life events Lack of access to MH services (Toms et al., 2015: 27.9% ID/MH population past 12 mo., Salamone et al., 2014: 25% children with ASD/MH) Parents’ own mental health problems Poorer quality parent-child relationships Difficulty learning effective coping skills, communicating needs, identifying emotions

What can we do? Mental health of children with ID and/or autism is a mainstream (i.e., a big!) MH, and EI, policy issue Children with ID and/or autism face a mental health inequality: reduce inequality by targeting identified factors Improve awareness, recognition, training, availability of services, evidence base for “treatments” (esp. for severe ID), and Early Intervention/support EI: focus on parent-child relationships, family patterns of interaction, parent health, advocacy skills NICE: Autism in under 19s: Support and management (August, 2013); Mental Health Problems in People with Learning Disabilities (September 2016)

R.Hastings@warwick.ac.uk @ProfRHastings http://profhastings.blogspot.co.uk/

Mothers – Kessler 6

Child positive well-being [Totsika et al. 2015 RASD]

Siblings, not just parents [Hastings et al. 2014 RASD] 60 Families Behavioural and emotional problems – child with ASD Behavioural and emotional problems – child with ASD Sibling behavioural and emotional problems Maternal depression 2.5 to 3 years later