Dr Sarah Cassidy Atypical Development Theme Lead. Suicide Risk in Autism

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1 Dr Sarah Cassidy Atypical Development Theme Lead Suicide Risk in Autism

2 Overview Language Systematic Review: What do we know about suicidality in autism? Large scale clinic study of suicide risk in adults with Asperger Syndrome Another look at the clinical characteristics of autism Implications for assessment and prevention

3 Language Talking about people first and foremost Avoid committed suicide or completed suicide Families have reported that terms such as: died by suicide, killed themselves are more accurate Families will use a range of terms to describe and come to terms with the death of a loved one

4 ASC, Mental Health and Suicidality Why may those with ASC be at increased risk? Isolation social and non-social Lack of feeling like you belong thoughts of leaving Social difficulties stress and anxiety Communication difficulties accessing help Lack of opportunities employment, education etc. Not fulfilling full potential

5 Life experiences in ASC Diagnosis: ~5 years for classic autism (Howlin and Asgharian, 1999) vs. ~11 years or even adulthood for AS (e.g. Jones et al., 2014; Powell, 2002) Lack of support post diagnosis (Crane et al. 2015) Bullying and peer victimisation (Shtayermman, 2007; 2008) Transition to adulthood: Lack of support services (Pilling et al. 2012) Health and social difficulties (Balfe and Tantam, 2010) Poor quality of life, low occupational achievement (Howlin et al. 2013) Social exclusion and isolation (Howlin 2000; Baron-Cohen, 2008)

6 Mental health in ASC High rates of comorbidity with mood and anxiety disorders: Depression present in 30 50% of adults with high functioning ASC/AS (e.g. Cassidy et al. 2014; Lugnegård et al. 2011; Hofvander et al. 2009; Sterling et al. 2008), and 30% of children (e.g. Strang et al. 2012). Anxiety present in ~50% of adults (e.g. Lugnegård et al. 2011; Hofvander et al. 2009), and ~40% of children (e.g. Strang et al. 2012; van Steensel et al. 2011). Mood disorders are a significant risk factor for suicide in the general population (Kasper et al. 1996; Baraclough et al. 1974) What about suicide risk in ASC?

7 Suicidality in Adults with ASC Adults with ASC at significant risk of suicide: 42 adults with AS living in the community; suicidal ideation 40% suicide attempts 15% (Balfe and Tantam, 2010) 26 adult psychiatric patients with ASC; suicidal ideation 30 8%, 7.7% died by suicide (Raja et al. 2011) 74 adults with ASC + depression; suicidal attempts 24% (Takara and Kondo, 2014) Adults with ASC/AS make up 7.3% - 15% of suicidal populations (Kato et al. 2013; Ryden et al. 2008) Adults with ASC significantly more likely to die by suicide than the general population. Being female, ASC without comorbid LD, depression are risk factors (Hirvikoski et al. 2015)

8 Suicidality in Children and Young People with ASC Children / young people with ASC/AS at significant risk of suicide: Suicidal ideation present in 10 50% of ASC/AS samples (Shtayermman, 2007; 2008; Mayes et al. 2013) Suicidal behaviour present in ~ 11% of ASC/AS samples (Hardan and Sahl, 1999; Storch et al. 2013; Mayes et al. 2013) Adolescents with AS/PDD made up 12.8% of suicidal population (Mikami et al. 2009)

9 Presentation of suicidality in ASC Suicide attempts in ASC tend to be more aggressive/lethal, impulsive, atypical triggers (Takara and Kondo, 2014; Kato et al. 2013; Spencer et al. 2011; Schmid, 2011; Hare, 1997) Role of social difficulties: Peer victimisation in 38-75% of samples (Mayes et al. 2013; Mikami et al. 2009; Shtayermman, 2007; 2008; Spencer et al. 2011; Schmid, 2011; Hare, 1997) Co-morbidity of psychiatric problems, e.g. BPD, depression, psychosis Less connected to psychiatric services (Kato et al. 2013; Raja, 2014)

10 Summary Eight studies show high levels of suicidal ideation and behaviour in ASC Three studies show high prevalence of ASC in suicidal populations Risk factors include; being male, peer victimisation, age, depression, autism severity, behavioural problems, SES, low education, BPD Piece meal approach, little attention to risk/protective factors, no validated measures or interventions (Cassidy et al. 2014; Segers and Rawana, 2014; Hannon and Taylor, 2013)

11 Clinic Study 1. What is the lifetime experience of suicidal ideation, suicide plans and attempts in a large sample (n = 374) of adults with diagnosis of AS in adulthood? 2. How does the rate of suicidal ideation in AS compare to other groups? 3. What are the associated risk factors? Depression and self-reported autistic traits. Cassidy, Bradley, Robinson, Allison, McHugh and Baron-Cohen (2014), Lancet Psychiatry, 1(2),

12 Method Analysis of medical records from the Cambridge Lifetime Asperger Syndrome Service (CLASS) clinic Patients completed the Autism Spectrum Quotient (AQ), Empathy Quotient (EQ) and patient questionnaire prior to clinical assessment: 1. have you ever been diagnosed with depression? 2. have you ever felt suicidal?, and if yes, have you ever planned or attempted suicide?

13 Diagnosis CLASS provides a diagnostic service to adults with possible AS, in recognition that adults born before 1994 would have slipped through the net Standard diagnostic instruments for ASC miss up to 50% of adults with AS or high functioning ASC (Lai et al. 2011) The CLASS clinic developed the Adult Asperger Assessment (AAA), based on but more stringent than DSM-IV criteria (Baron- Cohen et al. 2005) Diagnosis made in person by a trained clinician with help of an informant in 95% of cases

14 Participants 374 patients (68% male) diagnosed with AS between , identified from the CLASS clinic database Mean age at diagnosis was 31.5 years (17-67 years, SD = 10.9) 23% of the sample was in full time education at the time of assessment

15 Results Lifetime experience of depression, Suicidal Ideation and Suicide Plans or Attempts did not differ significantly between males and females.

16 Results AS + history of depression more likely to report: Suicidal Ideation (OR 4.3, 95% CI ; p<0.001) Plans or Attempts at Suicide (OR 2.4, 95% CI ; p<0.001)

17 Results Significantly higher AQ if Planned/Attempted suicide (t(366)=2.6, p<0.01)

18 Comparison Samples Comparison samples were identified through searches of Medline, PsycINFO from; The UK general population, medical and psychiatric populations and Google Scholar General search term suicid* in combination with search terms for each disorder (e.g. ADHD, autism ) Studies had to include self-report questions on the lifetime experience of suicidal ideation in adult men and women between 16 and 75 years of age

19 Results

20 Summary Adults with late diagnosis of AS; 66% Suicidal Ideation, 35% Planned/Attempted suicide, 31% history of depression Risk factors; depression and high AQ (for P/A) Suicidal ideation significantly higher in AS group than the general population and patients with psychosis

21 Discussion Rate of depression in current study (31%) similar to previous (~30 50%; Lugnegård et al. 2011; Hofvander et al. 2009; Sterling et al. 2008) but lower than suicidality (66%) Higher rate of suicidal ideation (66%), suicide plans and attempts (35%) than previous studies (~11 50%) late diagnosis a risk factor? (e.g. Simoncini et al. 2014; Raja, 2014) Strong post-diagnostic support improves quality of life (Renty and Roeyers, 2006), mental health (NAS, 2008) and reduces use of acute hospital services (NAO, 2009).

22 Clinical Characteristics of ASC Could also increase risk of suicidality: Narrow obsessive interests Inflexible thinking Theory of Mind Difficulties Inhibition difficulties Challenges for assessment and treatment: Alexithymia (e.g. Bird et al. 2010) Over-literal interpretation (e.g. Happe et al., 1995) Masking

23 Adapting mental health measures for Autism We identified the most robust tools to identify depression and suicide risk in the general population and those with autism Suicide Risk: None have been used in research so far with those with autism C-SSRS, BSS, SBQ-R robust in general population Depression: One study exploring usefulness of BDI-II in autism PHQ-9, CESD

24 Implications for assessment Probe circumstances and responses Consider screening for suicidality and depression, particularly during diagnosis of ASC in adulthood Concrete and closed questions Suicidality can occur in the absence of outward distress or depression, and/or can be explosive Visual aids and prompts to aid description of emotional state Look at change loss of interest in special interest, change in sleep pattern etc.

25 Prevention Awareness of suicide risk and presentation in autism Link with mental health problems e.g. secondary depression? Delayed diagnosis, lack of support, poor outcomes Lower risk of secondary depression Access to diagnosis and support post-diagnosis Improved access to therapy (Raja, 2014) CBT modified approaches Prevent people with ASC slipping through the net (Cassidy et al. 2014)

Thanks To... ARC and CLASS clinic: Prof.

26 Thanks To... ARC and CLASS clinic: Prof. Simon Baron-Cohen, Dr. Carrie Allison, Dr. Paul Bradley, Dr. Janine Robinson, Meghan McHugh, Gareth Richards. Mental Health Autism: Dr. Louise Bradley, Dr. Rebecca Shaw, Kathryn Cook. FRC-PBA: Sam Waldren, Andy Davis, Claire Pillinger, Katie Higgs, Becky Crookes, Penny Hannant, Gurkaran MHAutism.coventry.ac.uk

Suicide and autism. Dr James Cusack, Dr Sarah Cassidy & Jon Spiers February 2017

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