ACT's 14th Annual Focus on Research Conference - April 5 & 6, Understanding the needs of girls and. and women on the autism spectrum

Transcription

1 Understanding the needs of girls and women on the autism spectrum Will Mandy DClinPsy, Outline of Part 2 A developmental perspective Camouflaging revisited Why do autistic people camouflage? Is camouflaging friend or foe? Mental health needs of autistic girls and women Anorexia nervosa and restrictive eating What next? How we can better support girls and women on the autism spectrum Dr. William Mandy, University College London, UK,

2 Risk of missed diagnosis (e.g. Zwaigenbaum et al., 2012; Giarelli et al., 2010l) School social difficulties: more likely ignored than rejected (e.g. Dean et al., 2014) Autistic difficulties underestimated at school (e.g. Mandy et al., 2012) Early childhood Mid and later childhood Severe co occurring psychopathology, often misunderstood (e.g. Wentz et al., 2005) Vulnerability risk of exploitation (e.g. Cridland et al., 2014) Adolescence Adulthood The Avon Longitudinal Study of Patents and Children (ALSPAC) Dr. William Mandy, University College London, UK,

3 Social Communication Disorders Checklist The ability to communicate and interact effectively with other people, based on a capacity to mentalize British Journal of Psychiatry, 2005 The social communication disorders checklist (SCDC) Reliability Internal consistency = 0.93 Test retest reliability (average 2.7 years) =.81 Validity Moderate correlation with 3Di social and communication subscales (r=.30 to.41) Good sensitivity (.88) and specificity (.91) with respect to ASD Influenced by genetic variants that also influence autism risk (Robinson et al., 2016, St Pourcain et al., 2010) Continues to show high heritability into adolescence (St Pourcain et al., 2014) Dr. William Mandy, University College London, UK,

4 ATs across childhood and adolescence Mandy et al. (in press), JCPP Measured in ALSPAC aged 7, 10, 13 and 16 years 9744 participants: males (n=4,784) and females (n=4,960) Data modeled using: Latent growth curve analysis Growth mixture models Jon Heron (Bristol) and Liz Pellicano (UCL, IoE) AT growth for males and females Males Mean SCDC score Females Age (yrs) Multi group (i.e., male and female) latent growth curve model with intercept, slope and quadratic term. CFI=.99; TLI=.99; abic= ; RMSEA=.024 (upper bound=.033). Dr. William Mandy, University College London, UK,

5 The disappearance of the gender gap Difference in SCDC score Age (yrs) At 7 years, males more likely to score above SCDC clinical threshold (OR=1.99, 95% CI 1.82, 2.16) and above 99 th centile (OR=6.15, 95% CI 5.44, 6.85) By 16 years, this effect has completely disappeared for threshold (OR=.91, 95% CI 0.73,1.10) and 99 th centile (OR=1.18, 95% CI 0.56, 1.80) Females had higher odds than males of first being identified by the SCDC as having high autistic traits in adolescence (at 13 or 16 years) rather than in childhood (at 7 or 10 years) (OR=2.47, 95% CI [1.97, 3.09]) Dr. William Mandy, University College London, UK,

6 Conclusions Social communication difficulties escalate in some young people as they enter adolescence Females are more likely than males to experience a rise in social communication difficulties during adolescence New difficulties with genuine adolescent onset? Longstanding difficulties that only become overt in adolescence? (Bargiela et al., 2016) Outline of Part 2 A developmental perspective Camouflaging revisited Why do autistic people camouflage? Is camouflaging friend or foe? Mental health needs of autistic girls and women Anorexia nervosa and restrictive eating What next? How we can better support girls and women on the autism spectrum Dr. William Mandy, University College London, UK,

7 Camouflage The masking of autism behaviours in social situations and/or the performance of behaviours to compensate for difficulties associated with autism Putting on my best normal Hull et al.,2017 Reflecting Mandy et al., 2012; Mandy & Tchanturia, 2015; Lai et al., 2011; Lai et al., 2015; National Autistic Society Autism in Pink project Ninety two autistic adults completed web survey Provided qualitative data, analysed using Thematic Analysis Address questions about the nature, causes and consequences of camouflaging Dr. William Mandy, University College London, UK,

8 Hull et al., 2017 Why do people camouflage? Camouflaging helps to survive in school and college and it is important for keeping jobs F27 I want to avoid the bullying mostly F48 It enables me to be with other people in a way that is relatively comfortable for me and for them F56 Dr. William Mandy, University College London, UK,

9 Hull et al., 2017 What are the consequences of camouflaging? It s exhausting! I feel the need to seek solitude so I can be myself and not have to think about how I am perceived by others. O30 I went for so long without being diagnosed because they didn t know that I could pretend to be normal! F20 People need to learn how to drop the camou age when in situations such as medical assessments or dealing with support professionals F28 I feel as though I ve lost track of who I really am, and that my actual self is floating somewhere above me like a balloon F22 Dr. William Mandy, University College London, UK,

10 Camouflaging of Autistic Traits Questionnaire (CAT-Q) Following observational/reflective approach Self-report measure of social camouflaging developed from autistic adults selfreported camouflaging behaviours (Hull et al., 2017) 25 items Other-report version being developed With: Dr Will Mandy, Dr Meng-Chuan Lai, Prof Simon Baron-Cohen, Dr Carrie Allison, Ms Paula Smith, Prof KV Petrides I have spent time learning social skills from television shows and films, and try to use these in my interactions. I monitor my body language or facial expressions so that I appear interested by the person I am interacting with. I have to force myself to interact with people when I am in social situations. Compensation Masking Assimilation 350 autistic (female n=191) and 471 nonautistic (female n=255) Test retest reliability (3 months) =.77 Overall camouflaging Validity: Higher scores associated: Being autistic and higher autistic traits Depression and anxiety Lower wellbeing Social anxiety Dr. William Mandy, University College London, UK,

11 Do autistic females really camouflage more than autistic males? Yes! But this is only a medium sized effect (d=.6) This finding fits with other methods of measuring camouflaging (Ratto et al., 2017; Dena et al., 2016; Lai et al., 2016) Amongst autistic women: CAT Q scores are associated with: Depression (as measured by PHQ 9) Generalised anxiety (as measured by the GAD 7) Social Anxiety (as measured by the LSAS) (controlling for autism trait severity) Dr. William Mandy, University College London, UK,

12 Outline of Part 2 A developmental perspective Camouflaging revisited Why do autistic people camouflage? Is camouflaging friend or foe? Mental health needs of autistic girls and women Anorexia nervosa and restrictive eating What next? How we can better support girls and women on the autism spectrum Anorexia Nervosa Diagnosed when a person becomes significantly underweight due to restricted eating, reflecting an intense fear of putting on weight and a distorted body image (APA, 2013) Onset typically in adolescence and early adulthood Affects over 10 females to 1 male High rates of mortality Dr. William Mandy, University College London, UK,

13 AN and ASC Prof Christopher Gillberg (1985) For review of the Gothenburg studies, see Huke et al., 2013 But we need to be cautious The Minnesota Starvation Experiment (Keys et al., 1950) Dr. William Mandy, University College London, UK,

14 The link between autism and AN Use of gold standard measures (e.g., Westwood, Mandy Tchanturia, 2017) Use of historical report (Vagni et al., 2016) True link between AN and autism Findings in recovered samples (e.g., Anckarsäter et al., 2011) 20 to 30% of women with AN are autistic Care implications Women with AN in the context of autism: Usually their autism is unrecognised Experience the worst outcomes amongst AN patients (Wentz et al., 2009) Benefit the least from current interventions (Tchanturia et al., 2016; Stewart et al., 2016) Are not acknowledged, let alone accommodated, by current AN / ED guidelines (Kinnaird, Norton, Tchanturia et al., 2017) Dr. William Mandy, University College London, UK,

15 Recently funded us to investigate AN in autistic women, to help inform improvements to care. We have two main aims: 1. Practical how can ED services become more autism friendly? 2. Theoretical what causes and maintains ED in autistic people? Phase 1 qualitative study with autistic women, parents and professionals Phase 2 quantitative study, testing ideas generated in Phase 2 Practical ways in which ED services can become more autism friendly Awareness of sensory issues Greater autism awareness Tailored interventions More carer invovlement Less group work? General lack of services Dr. William Mandy, University College London, UK,

16 Developing a better understanding of what causes and maintains restrictive eating difficulties of autistic people Are restrictive eating problems in autistic women really AN? Or are they sometimes avoidant restrictive food intake disorder (ARFID)? Less emphasis on weight and shape concerns? Restriction of diet as a rulebased response to uncertainty? Starvation as a way to reduce anxiety Starvation as a way to reduce sensory difficulties Calorie counting as a special interest? The case of eating disorder is likely to generalise. Specialist service for OCD 106 consecutive referrals approached, of whom 73 consented to join the study 21 had autism, and 11 of these were female Dr. William Mandy, University College London, UK,

17 Outline of Part 2 A developmental perspective Camouflaging revisited Why do autistic people camouflage? Is camouflaging friend or foe? Mental health needs of autistic girls and women Anorexia nervosa and restrictive eating What next? How we can better support girls and women on the autism spectrum Under ascertainment of females with autism Bias against receiving assessment Bias against meeting diagnostic criteria Individual characteristics Environment Dr. William Mandy, University College London, UK,

18 Bias against receiving assessment GPs School Social care Assessment Pediatricians Self referral Employment Mental health services Crane et al., 2016; Rogers et al., 2016 Autism assessments in eating disorder services Assessments for autism, and for autistic traits, should be routine and common in eating disorder services Specific team members should be trained up and specialise: ADOS Ritvo Adult Autism Diagnostic Scale 3Di Adult Also in OCD, personality disorder, general mental health services. Dr. William Mandy, University College London, UK,

19 Bias against meeting diagnostic criteria Participants Inclusion criteria based on DSM / ICD Constructs Constructs based on conventional definitions Bias towards exclusion of atypical cases Atypical symptoms / presentations not captured Bias against meeting diagnostic criteria Need a better understanding of the female autism phenotype Need to broaden our notion of how autism manifests but without straying from the fundamental essence of what autism is (Lai et al., 2015) Dr. William Mandy, University College London, UK,

20 Biased identification Examples taken from the ADI R, from interests and behaviors section Is she unusually interested in things like metal objects, lights, street signs or toilets? Biased identification Examples taken from the ADI R, from interests and behaviors section Will she play with the whole toy or seem more interested in part of the toy (e.g. spinning the wheels of a car or opening and shutting its door)? Dr. William Mandy, University College London, UK,

21 Biased identification Examples taken from the ADI R, from interests and behaviors section Does she have anything to which she is particularly attached such as a piece of pipe, a clothes peg or a stone? Bias against meeting diagnostic criteria Need a better understanding of the female autism phenotype Need to broaden our notion of how autism manifests but without straying from the fundamental essence of what autism is (Lai et al., 2015) Gender specific measures or adaptations of measures? Take account of camouflaging in diagnostic assessment (Hull et al., 2017) Dr. William Mandy, University College London, UK,

22 And what about post diagnosis? Crucial that gender specific psychoeducation follows diagnosis E.g., Bargiela et al., (2016) sexual abuse finding Adaption of mental health services General adaptions made (Cooper, Loades, Russell et al., 2017) New autism specific treatments developed This talk included consideration of social camouflaging in autism. Our group have recently developed a self report measure of social camouflaging in teens and adults, called the Questionnaire of Camouflaging Autistic Traits (Q CAT) The Q CAT is free to use. If you would like a copy, please Dr Will Mandy w.mandy@ucl.ac.uk Dr. William Mandy, University College London, UK,

23 Watch this space (and please get Meng Chuan Lai Simon Baron Cohen David Skuse Marianna Murin Rebecca Chilvers Rachel Bryant Waugh Rachel Hiller Meng Chuan Lai Liz Pellicano Robyn Steward Dr. William Mandy, University College London, UK,

24 Kate Tchanturia Heather Westwood Sarah Bargiela Laura Hull Hannah Pickard Janina Brede John Fox Catherine Jones Charlie Babbs This talk included consideration of social camouflaging in autism. Our group have recently developed a self report measure of social camouflaging in teens and adults, called the Questionnaire of Camouflaging Autistic Traits (Q CAT) The Q CAT is free to use. If you would like a copy, please Dr Will Mandy w.mandy@ucl.ac.uk Dr. William Mandy, University College London, UK,