Six ideas about how to address the autism mental health crisis

Added on 30/06/2024

Type de contenu

Journal article of the type Editorial ( ; english)

Will Mandy
Six ideas about how to address the autism mental health crisis published in the journal "Autism" n°26, vol.2, 4 pages , doi: 10.1177/13623613211067928

- 6% of authors cited in the bibliography of this resource have publicly identified as autistic (8 out of 145 authors).
- 13% of references cited in this resource contain at least one author who has publicly identified as autistic (4 out of 31 references).

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Summary/Presentation

The autism mental health crisis can be described with the following paradox: autistic people have a high chance of developing mental health problems but a low chance of receiving effective help. In this editorial, I outline the mental health challenges that autistic people experience under current systems of care and share some ideas about how clinicians, researchers and members of the autism community can work together to address this situation. The extent of the mental health challenges that autistic people face became clear to me more than a decade ago with the publication of a landmark paper, Psychiatric Disorders in Children With Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample (Simonoff et al., 2008). Its findings were compelling and shocking: 70% of autistic children met criteria for at least one psychiatric disorder and 41% had two or more. These very high rates of mental health difficulties were all the more striking because they were observed in a community-based sample rather than a clinic-based sample, where we might expect those with cooccurring mental health problems to be overrepresented. Since then, many studies have confirmed that autistic people experience high rates of mental health challenges, substantially higher than those found in non-autistic comparison groups in both clinical and general population samples (see Lai et al., 2019, for a systematic review and meta-analysis). This elevated risk is for the full gamut of conditions, including anxiety, depression, bipolar disorder, psychotic disorders, obsessive-compulsive disorder (OCD), sleep disorders and conduct problems. These difficulties are found across the lifespan and affect autistic people of all genders. The consequences for autistic people with untreated mental health problems include lower quality of life (Mason et al., 2019), worse employment prospects (Scheeren et al., 2021) and greater risk of premature mortality (Hirvikoski et al., 2018). Support systems for autistic mental health are, currently, not fit for purpose. I am not criticising the individuals delivering mental health services who, in my experience, are usually highly dedicated to their complex and challenging work. Rather, the lack of support for autistic mental health reflects long-standing systemic problems that result in professionals lacking the required resources and training to provide effective support to their autistic clients. In a US-based online questionnaire, a third of autistic adult participants reported having unmet mental health needs, which was twice the rate found in the nonautistic comparison sample (Nicolaidis et al., 2013). In the United Kingdom, a survey of post-diagnostic experiences of autistic adults found that 45% wanted psychological therapy for their mental health challenges, but only 22% were offered it (Jones et al., 2014). There are other indicators that mental health needs of autistic people are not well supported. Rates of psychotropic medication use are high for autistic people (Nylander et al., 2018), with the possible implication that some problems are being treated at the symptom level, with insufficient in-depth formulation of underlying difficulties and the sources contributing to these (e.g. the mismatch of individual characteristics and environmental demands). The growing qualitative literature on the experiences of autistic people in mental health services highlights that autistic people often struggle to access care and face multiple barriers to benefitting from treatment (e.g. Babb et al., 2021; Camm-Crosbie et al., 2019). Thankfully, there is growing consensus that this situation cannot persist – that services must do more to include and help autistic clients. Recently, the James Lind Alliance conducted a priority-setting exercise with more than 1000 members of the autism community (Cusack & Sterry, 2016). The exercise identified improving mental health interventions for autistic people as the number one priority for autism research. In the United Kingdom, the National Health Service (NHS) Long-Term Plan, a highly influential document that provides strategic direction to the NHS over a 10-year period, highlighted better care for autistic people, including a focus on mental health, as a priority (NHS, 2019). The World Health Organization published a resolution (WHA67.8) recognising the stigma and discrimination that autistic people face and explicitly calling out the need for better mental health care. So, there is a will to improve mental health care for autistic people. But how can this be accomplished? Here, I put forward six suggestions to contribute to debates about this crucial task.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

  • C. Babb, J. Brede, C. Jones, M. Elliott, C. Zanker, K. Tchanturia, L. Serpell, W. Mandy, J Fox (2021). "'It's not that they don't want to access the support... it's the impact of the autism': The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals".

  • B. Beresford, S. Mukherjee, E. Mayhew, E. Heavey, A. Park, L. Stuttard, V. Allgar, M. Knapp (2020). "Evaluating specialist autism teams' provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study". Health Serv Deliv Res, 8(48). doi:10.3310/hsdr08480

  • J. Brede, C. Babb, C. Jones, M. Elliott, C. Zanker, K. Tchanturia, L. Serpell, J. Fox, W. Mandy (2020). "'For Me, the Anorexia is Just a Symptom, and the Cause is the Autism': Investigating Restrictive Eating Disorders in Autistic Women". J Autism Dev Disord, 50(12). doi:10.1007/s10803-020-04479-3

  • R. Bundy, M.Mandy, J. Brinkert, L. Crane, H. Belcher, L. Bourne, J. Brede, J. Cook (2022). "The Impact of Early Stages of COVID-19 on the Mental Health of Autistic Adults in the United Kingdom: A Longitudinal Mixed-Methods Study". Autism, 26(7). doi:10.1177/13623613211065543

  • L. Camm-Crosbie, L. Bradley, R. Shaw, S. Baron-Cohen, S. Cassidy (2019). "'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality". Autism, 23(6). doi:10.1177/1362361318816053

  • A. Churchard, M. Ryder, A. Greenhill, W. Mandy (2019). "The prevalence of autistic traits in a homeless population". Autism, 23(3). doi:10.1177/1362361318768484

  • L. Crane, I. Davidson, R. Prosser, E. Pellicano (2019). "Understanding psychiatrists' knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: online survey". BJPsych open, 5(3). doi:10.1192/bjo.2019.12

  • P. Cusack, R. Sterry (2016). "Your questions shaping future autism research". Autistica.

  • K. Gordon, M. Murin, O. Baykaner, L. Roughan, V. Livermore‐Hardy, D. Skuse, W. Mandy (2015). "A randomised controlled trial of PEGASUS, a psychoeducational programme for young people with high‐functioning autism spectrum disorder". Child Psychology Psychiatry, 56(4). doi:10.1111/jcpp.12304

  • J. Hellriegel, C. Barber, M. Wikramanayake, N. Fineberg, W. Mandy (2017). "Is 'not just right experience' (NJRE) in obsessive-compulsive disorder part of an autistic phenotype?". CNS Spectr., 22(1). doi:10.1017/s1092852916000511

  • T. Hirvikoski, E. Mittendorfer-Rutz, M. Boman, H. Larsson, P. Lichtenstein, S. Bölte (2016). "Premature mortality in autism spectrum disorder". Br J Psychiatry, 208(3). doi:10.1192/bjp.bp.114.160192

  • Q. Hu, T. Chandrasekhar (2021). "Meeting the Mental Health Needs of College Students with ASD: A Survey of University and College Counseling Center Directors". J Autism Dev Disord, 51(1). doi:10.1007/s10803-020-04530-3

  • V. Huke, J. Turk, S. Saeidi, A. Kent, J. Morgan (2013). "Autism Spectrum Disorders in Eating Disorder Populations: A Systematic Review". Euro Eating Disorders Rev, 21(5). doi:10.1002/erv.2244

  • L. Jones, L. Goddard, E. Hill, L. Henry, L. Crane (2014). "Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom". J Autism Dev Disord, 44(12). doi:10.1007/s10803-014-2161-3

  • M. Lai, C. Kassee, R. Besney, S. Bonato, L. Hull, W. Mandy, P. Szatmari, S. Ameis (2019). "Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis". The Lancet Psychiatry, 6(10). doi:10.1016/s2215-0366(19)30289-5

  • D. Mason, J. Mackintosh, H. McConachie, J. Rodgers, T. Finch, J. Parr (2019). "Quality of life for older autistic people: The impact of mental health difficulties". Research in Autism Spectrum Disorders, 63. doi:10.1016/j.rasd.2019.02.007

  • P. Mitchell, E. Sheppard, S. Cassidy (2021). "Autism and the double empathy problem: Implications for development and mental health". British J of Dev Psycho, 39(1). doi:10.1111/bjdp.12350

  • National Health Service. (2019). "NHS long term plan". (Source)

  • L. Neil, N. Choque Olsson, E. Pellicano (2016). "The Relationship Between Intolerance of Uncertainty, Sensory Sensitivities, and Anxiety in Autistic and Typically Developing Children". J Autism Dev Disord, 46(6). doi:10.1007/s10803-016-2721-9

  • W. Nishani Maheshi Wikramanayake, W. Mandy, S. Shahper, S. Kaur, S. Kolli, S. Osman, J. Reid, K. Jefferies-Sewell, N. Anne Fineberg (2018). "Autism spectrum disorders in adult outpatients with obsessive compulsive disorder in the UK". International Journal of Psychiatry in Clinical Practice, 22(1). doi:10.1080/13651501.2017.1354029

  • L. Nylander, A. Axmon, P. Björne, G. Ahlström, C. Gillberg (2018). "Older Adults with Autism Spectrum Disorders in Sweden: A Register Study of Diagnoses, Psychiatric Care Utilization and Psychotropic Medication of 601 Individuals". J Autism Dev Disord, 48(9). doi:10.1007/s10803-018-3567-0

  • F. Rumball, K. Antal, F. Happé, N. Grey (2021). "Co-occurring mental health symptoms and cognitive processes in trauma-exposed ASD adults". Research in Developmental Disabilities, 110. doi:10.1016/j.ridd.2020.103836

  • A. Russell, D. Gaunt, K. Cooper, J. Horwood, S. Barton, I. Ensum, B. Ingham, J. Parr, C. Metcalfe, D. Rai, D. Kessler, N. Wiles (2019). "Guided self-help for depression in autistic adults: the ADEPT feasibility RCT". Health Technol Assess, 23(68). doi:10.3310/hta23680

  • A. Scheeren, J. Marieke Buil, P. Howlin, M. Bartels, S. Begeer (2022). "Objective and subjective psychosocial outcomes in adults with autism spectrum disorder: A 6-year longitudinal study". Autism, 26(1). doi:10.1177/13623613211027673

  • E. Simonoff, A. Pickles, T. Charman, S. Chandler, T. Loucas, G. Baird (2008). "Psychiatric Disorders in Children With Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample". Journal of the American Academy of Child & Adolescent Psychiatry, 47(8). doi:10.1097/chi.0b013e318179964f

  • K. Tchanturia, K. Smith, D. Glennon, A. Burhouse (2020). "Towards an Improved Understanding of the Anorexia Nervosa and Autism Spectrum Comorbidity: PEACE Pathway Implementation". Front. Psychiatry, 11. doi:10.3389/fpsyt.2020.00640

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