‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality

Autism

Volumn 23, Issue 6, 2019, Pages 1431-1441

  Camm Crosbie, Louise ^a   Bradley, Louise ^a   Shaw, Rebecca ^b   Baron Cohen, Simon ^c,d   Cassidy, Sarah ^a,c,e  

^a Institute for Clean Growth and Future Mobility   (United Kingdom)

^b University of Warwick and Coventry and Warwickshire Partnership NHS Trust   (United Kingdom)

^c UNIVERSITY OF CAMBRIDGE   (United Kingdom)

^d CAMBRIDGESHIRE AND PETERBOROUGH NHS FOUNDATION TRUST   (United Kingdom)

^e UNIVERSITY OF NOTTINGHAM   (United Kingdom)

Author keywords

Autism spectrum condition; mental health; self injury; suicide; support; treatment

Indexed keywords

ADULT; AGED; ARTICLE; ASPERGER SYNDROME; AUTISM; AUTOMUTILATION; CHRONIC FATIGUE SYNDROME; CONTROLLED STUDY; DEPRESSION; EPILEPSY; FEMALE; HUMAN; KNOWLEDGE; MAJOR CLINICAL STUDY; MALE; MENTAL HEALTH; MIDDLE AGED; OBSESSIVE COMPULSIVE DISORDER; PERSONALITY DISORDER; PREVALENCE; PRIORITY JOURNAL; QUESTIONNAIRE; SCHIZOPHRENIA; SUICIDE; THEMATIC ANALYSIS; WELLBEING; YOUNG ADULT; ADOLESCENT; COMPLICATION; HEALTH CARE DELIVERY; MENTAL DISEASE; PSYCHOLOGY; SUICIDAL IDEATION;

ADOLESCENT; ADULT; AGED; AUTISTIC DISORDER; FEMALE; HEALTH SERVICES ACCESSIBILITY; HUMANS; MALE; MENTAL DISORDERS; MIDDLE AGED; SELF-INJURIOUS BEHAVIOR; SUICIDAL IDEATION; SURVEYS AND QUESTIONNAIRES; YOUNG ADULT;

EID: 85059325326     PISSN: 13623613     EISSN: 14617005     Source Type: Journal    
DOI: 10.1177/1362361318816053     Document Type: Article

References (48)

1. American Psychiatric Association (APA) (2013) Diagnostic and Statistical Manual of Mental Disorders. 5th edn. Washington, DC: APA.
2. Anderberg E, Cox JC, Neeley Tass ES. (2017) Sticking with it: Psychotherapy outcomes for adults with autism spectrum disorder in a university counseling center setting. Autism Research 10(12): 2048–2055.
3. Au-Yeung SK, Bradley L, Robertson A. (in press) Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults. Autism. DOI: 10.1177/1362361318818167.
4. Bird G, Silani G, Brindley R. (2010). Empathic brain responses in insula are modulated by levels of alexithymia but not autism. Brain 133(5): 1515–1525.
5. Bowker A, D’Angelo NM, Hicks R. (2011) Treatments for autism: parental choices and perceptions of change. Journal of Autism and Developmental Disorders 41(10): 1373–1382.
6. Braun V, Clarke V, (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3: 77–101.
7. Braun V, Clarke V, (2013) Successful Qualitative Research: A Practical Guide for Beginners. London: SAGE.
8. Braun V, Tricklebank G, Clarke V, (2013) It shouldn’t stick out from your bikini at the beach: meaning, gender and the hairy/hairless body. Psychology of Women Quarterly 37(4): 478–493.
9. Burgess AF, Gutstein SE, (2007) Quality of life for people with autism: raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health 12(2): 80–86.
10. Cassidy S, Rodgers J, (2017) Understanding and prevention of suicide in autism. The Lancet Psychiatry 4(6): 11.
11. Cassidy S, Bradley L, Shaw R. (2018a) Risk markers for suicidality in autistic adults. Molecular Autism 9(1): 42.
12. Cassidy S, Bradley P, Robinson J. (2014a) Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry 1(2): 142–147.
13. Cassidy S, Mitchell P, Chapman P. (2015) Processing of spontaneous emotional responses in adolescents and adults with autism spectrum disorders: effect of stimulus type. Autism Research 8(5): 534–544.
14. Cassidy S, Ropar D, Mitchell P. (2014b) Can adults with autism spectrum disorders infer what happened to someone from their emotional response? Autism Research 7(1): 112–123.
15. Cassidy SA, Bradley L, Bowen E. (2018b) Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: a systematic review. Autism Research 11(5): 681–812.
16. Cassidy SA, Bradley L, Bowen E. (2018c) Measurement properties of tools used to assess suicidality in autistic and general population adults: a systematic review. Clinical Psychology Review 62: 56–70.
17. Crane L, Adams F, Harper G. (2018) ‘Something needs to change’: mental health experiences of young autistic adults in England. Autism.
18. Crane L, Chester JW, Goddard L. (2016) Experiences of autism diagnosis: a survey of over 1000 parents in the United Kingdom. Autism 20(2): 153–162.
19. Daniels AM, Rosenberg RE, Law JK. (2011) Stability of initial autism spectrum disorder diagnoses in community settings. Journal of Autism and Developmental Disorders 41(1): 110–121.
20. Dossetor D, (2007) ‘All That Glitters Is Not Gold’: misdiagnosis of psychosis in pervasive developmental disorders – a case series. Clinical Child Psychology and Psychiatry 12(4): 537–548.
21. Fletcher-Watson S, Adams J, Brook K. (2018). Making the future together: shaping autism research through meaningful participation. Autism. Epub ahead of print 10 August. DOI: 10.1177/1362361318786721.
22. Ghaziuddin M, Ghaziuddin N, Greden J, (2002) Depression in persons with autism: implications for research and clinical care. Journal of Autism and Developmental Disorders 32(4): 299–306.
23. Hedley D, Uljarević M, (2018) Systematic review of suicide in autism spectrum disorder: current trends and implications. Current Developmental Disorders Reports 1: 12.
24. Hedley D, Uljarević M, Wilmot M. (2017) Brief report: social support, depression and suicidal ideation in adults with autism spectrum disorder. Journal of Autism and Developmental Disorders 47(11): 3669–3677.
25. Hedley D, Uljarević M, Wilmot M. (2018) Understanding depression and thoughts of self-harm in autism: a potential mechanism involving loneliness. Research in Autism Spectrum Disorders 46: 1–7.
26. Hirvikoski T, Mittendorfer-Rutz E, Boman M. (2016) Premature mortality in autism spectrum disorder. The British Journal of Psychiatry 208(3): 232–238.
27. Howlin P, (2008) Redressing the balance in autism research. Nature Clinical Practice Neurology 4(8): 407.
28. Howlin P, Asgharian A, (1999) The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families. Developmental Medicine and Child Neurology 41(6): 834–839.
29. Hull L, Petrides KV, Allison C. (2017). “Putting on my best normal”: social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders 47(8): 2519–2534.
30. Jones L, Goddard L, Hill EL. (2014) Experiences of receiving a diagnosis of autism spectrum disorder: a survey of adults in the United Kingdom. Journal of Autism and Developmental Disorders 44(12): 3033–3044.
31. Kenny L, Hattersley C, Molins B. (2016) Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 20(4): 442–462.
32. Lai MC, Lombardo MV, Ruigrok AN. (2017). Quantifying and exploring camouflaging in men and women with autism. Autism 21(6): 690–702.
33. Lever AG, Geurts HM, (2016) Psychiatric co-occurring symptoms and disorders in young, middle-aged, and older adults with autism spectrum disorder. Journal of Autism and Developmental Disorders 46(6): 1916–1930.
34. Maddox BB, Trubanova A, White SW, (2017) Untended wounds: non-suicidal self-injury in adults with autism spectrum disorder. Autism 21(4): 412–422.
35. Milton D, (2012) On the ontological status of autism: the double empathy problem. Disability and Society 27: 883–887.
36. Milton D, Bracher M, (2013) Autistics speak but are they heard? Medical Sociology Online 7: 61–69.
37. Milton D, Sims T, (2016) How is a sense of well-being and belonging constructed in the accounts of autistic adults? Disability and Society 31(4): 520–534.
38. Pellicano E, Dinsmore A, Charman T, (2014) What should autism research focus upon? Community views and priorities from the United Kingdom. Autism 18(7): 756–770.
39. Pelton MK, Cassidy SA, (2017) Are autistic traits associated with suicidality? A test of the interpersonal-psychological theory of suicide in a non-clinical young adult sample. Autism Research 10(11): 1891–1904.
40. Potter J, Wetherell M, (1987) Discourse and Social Psychology: Beyond Attitudes and Behaviour. London: SAGE.
41. Punshon C, Skirrow P, Murphy G, (2009) The ‘not guilty verdict’: psychological reactions to a diagnosis of Asperger syndrome in adulthood. Autism 13(3): 265–283.
42. Raja M, (2014) Suicide risk in adults with Asperger’s syndrome. The Lancet Psychiatry 1(2): 99–101.
43. Robeyns I, (2016) Conceptualising well-being for autistic persons. Journal of Medical Ethics 42: 383–390.
44. Robson C, (1993) Real World Research: A Resource for Social Scientists and Practitioners-researchers. Mallden, MA: Blackwell Publishers.
45. Rynkiewicz A, Schuller B, Marchi E. (2016). An investigation of the ‘female camouflage effect’in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular Autism 7(1): 10.
46. Sheppard E, Pillai D, Wong GTL. (2016). How easy is it to read the minds of people with autism spectrum disorder? Journal of Autism and Developmental Disorders 46(4): 1247–1254.
47. Van Orden KA, Witte TK, Cukrowicz KC. (2010) The interpersonal theory of suicide. Psychological Review 117(2): 575.
48. Wigham S, Barton S, Parr JR. (2017) A systematic review of the rates of depression in children and adults with high-functioning autism spectrum disorder. Journal of Mental Health Research in Intellectual Disabilities 10(4): 267–287.