How People with Autism Access Mental Health Services Specifically Suicide Hotlines and Crisis Support Services, and Current Approaches to Mental Health Care: A Scoping Review

References

• Ahmedani, B. K., & Hock, R. M. (2012). Health care access and treatment for children with co-morbid autism and psychiatric conditions. Social Psychiatry and Psychiatric Epidemiology, 47(11), 1807–1814. https://doi.org/10.1007/s00127-012-0482-0
   PubMed Web of Science ®Google Scholar
• Aldersey, H. M., & Whitley, R. (2015). Family influence in recovery from severe mental illness. Community Mental Health Journal, 51(4), 467–476. https://doi.org/10.1007/s10597-014-9783-y
   PubMed Web of Science ®Google Scholar
• Allen, J., Balfour, R., Bell, R., & Marmot, M. (2014). Social determinants of mental health. International Review of Psychiatry, 26(4), 392–407. https://doi.org/10.3109/09540261.2014.928270
   PubMed Web of Science ®Google Scholar
• Ameis, S. H., Lai, M. C., Mulsant, B. H., & Szatmari, P. (2020). Coping, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond. Molecular Autism, 11(1), 61. https://doi.org/10.1186/s13229-020-00365-y
   PubMed Web of Science ®Google Scholar
• Arksey, H., & O'Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616
   Google Scholar
• Bademli, K., & Duman, Z. Ç. (2014). Effects of a family-to-family support program on the mental health and coping strategies of caregivers of adults with mental illness: A randomized controlled study. Archives of Psychiatric Nursing, 28(6), 392–398. https://doi.org/10.1016/j.apnu.2014.08.011
   PubMed Web of Science ®Google Scholar
• Boshoff, K., Bowen-Salter, H., Gibbs, D., Phillips, R. L., Porter, L., & Wiles, L. (2021). A meta-synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children. Health & Social Care in the Community, 29(6), 1668–1682. https://doi.org/10.1111/hsc.13369
   PubMed Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Brookman-Frazee, L., Drahota, A., Stadnick, N., & Palinkas, L. A. (2012). Therapist perspectives on community mental health services for children with autism spectrum disorders. Administration and Policy in Mental Health, 39(5), 365–373. https://doi.org/10.1007/s10488-011-0355-y
   PubMed Web of Science ®Google Scholar
• Bryson, S. A., Corrigan, S. K., McDonald, T. P., & Holmes, C. (2008). Characteristics of children with autism spectrum disorders who received services through community mental health centers. Autism, 12(1), 65–82. https://doi.org/10.1177/1362361307085214
   PubMed Web of Science ®Google Scholar
• Calleja, S., Islam, F. M. A., Kingsley, J., & McDonald, R. (2020). Healthcare access for autistic adults: A systematic review. Medicine, 99(29), e20899. https://doi.org/10.1097/MD.0000000000020899
   PubMed Web of Science ®Google Scholar
• Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (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), 1431–1441. https://doi.org/10.1177/1362361318816053
   PubMed Web of Science ®Google Scholar
• Cervantes, P., Kuriakose, S., Donnelly, L., Filton, B., Marr, M., Okparaeke, E., Voorheis, K., Havens, J., & Horwitz, S. (2019). Sustainability of a care pathway for children and adolescents with autism spectrum disorder on an inpatient psychiatric service. Journal of Autism and Developmental Disorders, 49(8), 3173–3180. https://doi.org/10.1007/s10803-019-04029-6
   PubMed Web of Science ®Google Scholar
• Conner, C. M., Golt, J., Shaffer, R., Righi, G., Siegel, M., & Mazefsky, C. A. (2021). Emotion dysregulation is substantially elevated in autism compared to the general population: Impact on psychiatric services. Autism Research, 14(1), 169–181. https://doi.org/10.1002/aur.2450
   PubMed Web of Science ®Google Scholar
• Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477–493. https://doi.org/10.1177/1362361318757048
   PubMed Web of Science ®Google Scholar
• Elemy. (2021). Suicidal thoughts & autism: Resources & how to help. Elemy. Retrieved April 19, from https://www.elemy.com/studio/mood-disorders/autism-and-suicidal-thoughts/
   Google Scholar
• Foley, K.-R., & Trollor, J. (2015). Management of mental ill health in people with autism spectrum disorder. Australian Family Physician, 44(11), 784–790.
   PubMedGoogle Scholar
• Franck, N., Bon, L., Dekerle, M., Plasse, J., Massoubre, C., Pommier, R., Legros-Lafarge, E., Jaafari, N., Guillard-Bouhet, N., Quilès, C., Couhet, G., Verdoux, H., Gouache, B., Martin, B., Cervello, S., Demily, C., & Dubreucq, J. (2019). Satisfaction and needs in serious mental illness and autism spectrum disorder: The REHABase psychosocial rehabilitation project. Psychiatric Services, 70(4), 316–323. https://doi.org/10.1176/appi.ps.201800420
   PubMed Web of Science ®Google Scholar
• Imran, N., Chaudry, M. R., Azeem, M. W., Bhatti, M. R., Choudhary, Z. I., & Cheema, M. A. (2011). A survey of autism knowledge and attitudes among the healthcare professionals in Lahore. BMC Pediatrics, 11(1), 107. https://doi.org/10.1186/1471-2431-11-107
   PubMedGoogle Scholar
• Jackson, L., Keville, S., & Ludlow, A. K. (2020). Mothers’ experiences of accessing mental health care for their child with an autism spectrum disorder. Journal of Child and Family Studies, 29(2), 534–545. https://doi.org/10.1007/s10826-019-01662-8
   Web of Science ®Google Scholar
• Jensen, B. B., Currie, C., Dyson, A., Eisenstadt, N., Melhuish, E. (2013). Early years, family and education task group: Report European review of social determinants of health and the health divide in the WHO European region. https://www.euro.who.int/__data/assets/pdf_file/0006/236193/Early-years,-family-and-education-task-group-report.pdf
   Google Scholar
• Kalb, L. G., Stuart, E. A., Freedman, B., Zablotsky, B., & Vasa, R. (2012). Psychiatric-related emergency department visits among children with an autism spectrum disorder. Pediatric Emergency Care, 28(12), 1269–1276. https://doi.org/10.1097/PEC.0b013e3182767d96
   PubMed Web of Science ®Google Scholar
• Kalb, L. G., Stuart, E. A., Mandell, D. S., Olfson, M., & Vasa, R. A. (2017). Management of mental health crises among youths with and without ASD: A national survey of child psychiatrists. Psychiatric Services, 68(10), 1039–1045. https://doi.org/10.1176/appi.ps.201600332
   PubMed Web of Science ®Google Scholar
• Kuriakose, S., Filton, B., Marr, M., Okparaeke, E., Cervantes, P., Siegel, M., Horwitz, S., & Havens, J. (2018). Does an autism spectrum disorder care pathway improve care for children and adolescents with asd in inpatient psychiatric units? Journal of Autism and Developmental Disorders, 48(12), 4082–4089. https://doi.org/10.1007/s10803-018-3666-y
   PubMed Web of Science ®Google Scholar
• Levac, D., Colquhoun, H., & O'Brien, K. K. (2010). Scoping studies: Advancing the methodology. Implementation Science, 5(1), 69. https://doi.org/10.1186/1748-5908-5-69
   PubMed Web of Science ®Google Scholar
• Maddox, B. B., Crabbe, S., Beidas, R. S., Brookman-Frazee, L., Cannuscio, C. C., Miller, J. S., Nicolaidis, C., & Mandell, D. S. (2020). “I wouldn't know where to start": Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults. Autism, 24(4), 919–930. https://doi.org/10.1177/1362361319882227
   PubMed Web of Science ®Google Scholar
• Maddox, B. B., Crabbe, S. R., Fishman, J. M., Beidas, R. S., Brookman-Frazee, L., Miller, J. S., Nicolaidis, C., & Mandell, D. S. (2019). Factors influencing the use of cognitive-behavioral therapy with autistic adults: A survey of community mental health clinicians. Journal of Autism and Developmental Disorders, 49(11), 4421–4428. https://doi.org/10.1007/s10803-019-04156-0
   PubMed Web of Science ®Google Scholar
• Mandell, D. S. (2008). Psychiatric hospitalization among children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1059–1065. https://doi.org/10.1007/s10803-007-0481-2
   PubMed Web of Science ®Google Scholar
• Morgan, L. (2018). Crisis supports for the autism community. https://suicidology.org/wp-content/uploads/2019/07/Autism-Crisis-Supports.pdf
   Google Scholar
• Mouridsen, S. E., Rich, B., & Isager, T. (1999). Psychiatric morbidity in disintegrative psychosis and infantile autism: A long-term follow-up study. Psychopathology, 32(4), 177–183. https://doi.org/10.1159/000029087
   PubMed Web of Science ®Google Scholar
• Mouridsen, S. E., Rich, B., & Isager, T. (2008). Psychiatric disorders in adults diagnosed as children with atypical autism. A case control study. Journal of Neural Transmission, 115(1), 135–138. https://doi.org/10.1007/s00702-007-0798-1
   PubMed Web of Science ®Google Scholar
• Nylander, L., Axmon, A., Björne, P., Ahlström, G., & Gillberg, C. (2018). Older adults with autism spectrum disorders in Sweden: A register study of diagnoses, psychiatric care utilization and psychotropic medication of 601 individuals. Journal of Autism and Developmental Disorders, 48(9), 3076–3085. https://doi.org/10.1007/s10803-018-3567-0
   PubMed Web of Science ®Google Scholar
• QSR International Pty Ltd. (2020). NVivo. https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home
   Google Scholar
• Raja, M., & Azzoni, A. (2001). Asperger's disorder in the emergency psychiatric setting. General Hospital Psychiatry, 23(5), 285–293. https://doi.org/10.1016/S0163-8343(01)00155-4
   PubMed Web of Science ®Google Scholar
• Righi, G., Benevides, J., Mazefsky, C., Siegel, M., Sheinkopf, S. J., Morrow, E. M. & Autism Developmental Disabilities Inpatient Research, Collaborative (ADDIRC). (2018). Predictors of inpatient psychiatric hospitalization for children and adolescents with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(11), 3647–3657. https://doi.org/10.1007/s10803-017-3154-9
   PubMed Web of Science ®Google Scholar
• RU OK? (n.d). RU OK? Our story. Retrieved April 19, from https://www.ruok.org.au/our-story
   Google Scholar
• Ryan, S., Lai, J., & Weiss, J. A. (2018). Mental health service use among youth with autism spectrum disorder: A comparison of two age groups. Journal of Developmental and Behavioral Pediatrics : JDBP, 39(1), 20–27. https://doi.org/10.1097/DBP.0000000000000500
   PubMed Web of Science ®Google Scholar
• South, M., Costa, A. P., & McMorris, C. (2021). Death by suicide among people with autism: Beyond zebrafish. JAMA Network Open, 4(1), e2034018. https://doi.org/10.1001/jamanetworkopen.2020.34018
   PubMed Web of Science ®Google Scholar
• Stadnick, N. A., Lau, A. S., Dickson, K. S., Pesanti, K., Innes-Gomberg, D., & Brookman-Frazee, L. (2020). Service use by youth with autism within a system-driven implementation of evidence-based practices in children's mental health services. Autism, 24(8), 2094–2103. https://doi.org/10.1177/1362361320934230
   PubMed Web of Science ®Google Scholar
• Stadnick, N. A., Martinez, K., Aarons, G. A., Lee, D. A., Van Cleave, J., & Brookman-Frazee, L. (2020). Pediatric primary care perspectives on integrated mental health care for autism. Academic Pediatrics, 20(8), 1140–1147. https://doi.org/10.1016/j.acap.2020.03.006
   PubMed Web of Science ®Google Scholar
• Tanidir, C., & Mukaddes, N. M. (2014). Referral pattern and special interests in children and adolescents with Asperger syndrome: A Turkish referred sample. Autism, 18(2), 178–184. https://doi.org/10.1177/1362361312457716
   PubMed Web of Science ®Google Scholar
• Tricco, A. C., Lillie, E., Zarin, W., O'Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D. J., Horsley, T., Weeks, L., Hempel, S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C., … Straus, S. E. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467–473. https://doi.org/10.7326/M18-0850
   PubMed Web of Science ®Google Scholar
• Tsakanikos, E., Sturmey, P., Costello, H., Holt, G., & Bouras, N. (2007). Referral trends in mental health services for adults with intellectual disability and autism spectrum disorders. Autism, 11(1), 9–17. https://doi.org/10.1177/1362361307070987
   PubMed Web of Science ®Google Scholar
• Tunesi, S., Bosio, M., & Russo, A. G. (2019). Do autistic patients change healthcare services utilisation through the transition age? An Italian longitudinal retrospective study. BMJ Open, 9(11), e030844. https://doi.org/10.1136/bmjopen-2019-030844 [PMC][31727653
   PubMed Web of Science ®Google Scholar
• van Ijzendoorn, M. H., Rutgers, A. H., Bakermans-Kranenburg, M. J., Swinkels, S. H., van Daalen, E., Dietz, C., Naber, F. B., Buitelaar, J. K., & van Engeland, H. (2007). Parental sensitivity and attachment in children with autism spectrum disorder: Comparison with children with mental retardation, with language delays, and with typical development. Child Development, 78(2), 597–608. https://doi.org/10.1111/j.1467-8624.2007.01016.x
   PubMed Web of Science ®Google Scholar
• Vogan, V., Lake, J. K., Tint, A., Weiss, J. A., & Lunsky, Y. (2017). Tracking health care service use and the experiences of adults with autism spectrum disorder without intellectual disability: A longitudinal study of service rates, barriers and satisfaction. Disability and Health Journal, 10(2), 264–270. https://doi.org/10.1016/j.dhjo.2016.11.002
   PubMed Web of Science ®Google Scholar
• Weiner, L., Flin, A., Causin, J. B., Weibel, S., & Bertschy, G. (2019). A case study of suicidality presenting as a restricted interest in autism spectrum disorder. BMC Psychiatry, 19(1), Article 126. https://doi.org/10.1186/s12888-019-2122-7
   PubMedGoogle Scholar
• Weiss, J. A., Isaacs, B., Diepstra, H., Wilton, A. S., Brown, H. K., McGarry, C., & Lunsky, Y. (2018). Health concerns and health service utilization in a population cohort of young adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(1), 36–44. https://doi.org/10.1007/s10803-017-3292-0
   PubMed Web of Science ®Google Scholar
• World Health Organization. (2013). Review of social determinants and the health divide in the WHO European Region. https://www.euro.who.int/__data/assets/pdf_file/0004/251878/Review-of-social-determinants-and-the-health-divide-in-the-WHO-European-Region-FINAL-REPORT.pdf
   Google Scholar