Background: No studies to date have explored the content of referrals into ASD services. Investigating this may improve the accuracy and speed with which adults with ASD can be identified. Methods: Twenty-one referral forms for autistic adults diagnosed by a specialist ASD service were analyzed using a content analysis. Results: Five main themes were identified in the data: “The Social Dilemma”, “Communication Disconnect”, “Attainment”, “Managing Uncertainty” and “Emotional Well-being and Mental Health”. Conclusions: The results brought novel insights into the nature of difficulties adults with ASD face according to referrers. The findings enhance professional understanding of the issues most likely to represent ASD. The results highlight the importance of developing additional screening tools and methodologies that can capture referrers concerns.
Adamou, M., Jones, S. L., & Wetherhill, S. (2021). AAA Screening in Adults with ASD: A Retrospective Cohort Study. Advances in Autism, 8, 232-242. https://doi.org/10.1108/AIA-10-2020-0059
American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (DSM-5®). American Psychiatric Publishing. https://doi.org/10.1176/appi.books.9780890425596
Barrett, S. L., Uljarević, M., Jones, C. R. G., & Leekam, S. R. (2018). Assessing Subtypes of Restricted and Repetitive Behaviour Using the Adult Repetitive Behaviour Questionnaire-2 in Autistic Adults. Molecular Autism, 9, Article No. 58. https://doi.org/10.1186/s13229-018-0242-4
Bengtsson, M. (2016). How to Plan and Perform a Qualitative Study Using Content Analysis. NursingPlus Open, 2, 8-14. https://doi.org/10.1016/j.npls.2016.01.001
Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J., Bebbington, P., Jenkins, R., & Meltzer, H. (2011). Epidemiology of Autism Spectrum Disorders in Adults in the Community in England. Archives of General Psychiatry, 68, 459-465. https://doi.org/10.1001/archgenpsychiatry.2011.38
Cage, E., Di Monaco, J., & Newell, V. (2018). Experiences of Autism Acceptance and Mental Health in Autistic Adults. Journal of Autism and Developmental Disorders, 48, 473-484. https://doi.org/10.1007/s10803-017-3342-7
Charlot, L., Deutsch, C. K., Albert, A., Hunt, A., Connor, D. F., & McIlvane Jr., W. J. (2008). Mood and Anxiety Symptoms in Psychiatric Inpatients with Autism Spectrum Disorder and Depression. Journal of Mental Health Research in Intellectual Disabilities, 1, 238-253. https://doi.org/10.1080/19315860802313947
Chou, W.-J., Wang, P.-W., Hsiao, R. C., Hu, H.-F., & Yen, C.-F. (2020). Role of School Bullying Involvement in Depression, Anxiety, Suicidality, and Low Self-Esteem Among Adolescents With High-Functioning Autism Spectrum Disorder. Frontiers in Psychiatry, 11, Article No. 9. https://doi.org/10.3389/fpsyt.2020.00009
Chowdhury, M., Benson, B. A., & Hillier, A. (2010). Changes in Restricted Repetitive Behaviors with Age: A Study of High-Functioning Adults with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 4, 210-216. https://doi.org/10.1016/j.rasd.2009.09.006
Community and Mental Health Team, NHS Digital (2019). Autism Statistics. NHS Digital, Part of the Government Statistical Service. https://digital.nhs.uk/data-and-information/publications/statistical/autism-statistics/autism-statistics
Corbin, J. M., & Strauss, A. (1990). Grounded Theory Research: Procedures, Canons, and Evaluative Criteria. Qualitative Sociology, 13, 3-21. https://doi.org/10.1007/BF00988593
Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., & Hill, E. L. (2018). Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals. Journal of Autism and Developmental Disorders, 48, 3761-3772. https://doi.org/10.1007/s10803-018-3639-1
Cummins, C., Pellicano, E., & Crane, L. (2020). Autistic Adults’ Views of Their Communication Skills and Needs. International Journal of Language & Communication Disorders, 55, 678-689. https://doi.org/10.1111/1460-6984.12552
Dijkhuis, R. R., Ziermans, T. B., Van Rijn, S., Staal, W. G., & Swaab, H. (2017). Self-Regulation and Quality of Life in High-Functioning Young Adults with Autism. Autism, 21, 896-906. https://doi.org/10.1177/1362361316655525
Hedley, D., Uljarević, M., & Hedley, D. F. (2017). Employment and Living with Autism: Personal, Social and Economic Impact. In S. Halder, & L. C. Assaf (Eds.), Inclusion, Disability and Culture (pp. 295-311). Springer. https://doi.org/10.1007/978-3-319-55224-8_19
Hickey, A., Crabtree, J., & Stott, J. (2018). “Suddenly the First Fifty Years of My Life Made Sense”: Experiences of Older People with Autism. Autism: The International Journal of Research and Practice, 22, 357-367. https://doi.org/10.1177/1362361316680914
Hudson, C. C., Hall, L., & Harkness, K. L. (2019). Prevalence of Depressive Disorders in Individuals with Autism Spectrum Disorder: A Meta-Analysis. Journal of Abnormal Child Psychology, 47, 165-175. https://doi.org/10.1007/s10802-018-0402-1
Hurlbutt, K., & Chalmers, L. (2002). Adults with Autism Speak out. Focus on Autism and Other Developmental Disabilities, 17, 103-111. https://doi.org/10.1177/10883576020170020501
Jones, S. L., Johnson, M., Alty, B., & Adamou, M. (2021). The Effectiveness of RAADS-R as a Screening Tool for Adult ASD Populations. Autism Research and Treatment, 2021, Article ID: 9974791. https://doi.org/10.1155/2021/9974791
Leekam, S., Tandos, J., McConachie, H., Meins, E., Parkinson, K., Wright, C., Turner, M., Arnott, B., Vittorini, L., & Le Couteur, A. (2007). Repetitive Behaviours in Typically Developing 2-Year-Olds. Journal of Child Psychology and Psychiatry, 48, 1131-1138. https://doi.org/10.1111/j.1469-7610.2007.01778.x
Lin, L. Y., & Huang, P. C. (2019). Quality of Life and Its Related Factors for Adults with Autism Spectrum Disorder. Disability and Rehabilitation, 41, 896-903. https://doi.org/10.1080/09638288.2017.1414887
Mazzone, L., Ruta, L., & Reale, L. (2012). Psychiatric Comorbidities in Asperger Syndrome and High Functioning Autism: Diagnostic Challenges. Annals of General Psychiatry, 11, Article No. 16. https://doi.org/10.1186/1744-859x-11-16
McKenzie, K., Forsyth, K., O’Hare, A., McClure, I., Rutherford, M., Murray, A., & Irvine, L. (2015). Factors Influencing Waiting Times for Diagnosis of Autism Spectrum Disorder in Children and Adults. Research in Developmental Disabilities, 45-46, 300-306. https://doi.org/10.1016/j.ridd.2015.07.033
Müller, E., Schuler, A., & Yates, G. B. (2008). Social Challenges and Supports from the Perspective of Individuals with Asperger Syndrome and Other Autism Spectrum Disabilities. Autism, 12, 173-190. https://doi.org/10.1177/1362361307086664
Murphy, C. M., Wilson, C. E., Robertson, D. M., Ecker, C., Daly, E. M., Hammond, N., Galanopoulos, A., Dud, I., Murphy, D. G., & McAlonan, G. M. (2016). Autism Spectrum Disorder in Adults: Diagnosis, Management, and Health Services Development. Neuropsychiatric Disease and Treatment, 12, 1669-1686. https://doi.org/10.2147/NDT.S65455
Murphy, D. G. M., Beecham, J., Craig, M., & Ecker, C. (2011). Autism in Adults. New Biological Findings and Their Translational Implications to the Cost of Clinical Services. Brain Research, 1380, 22-33. https://doi.org/10.1016/j.brainres.2010.10.042
O’Connor, C., Burke, J., & Rooney, B. (2019). Diagnostic Disclosure and Social Marginalisation of Adults with ASD: Is There a Relationship and What Mediates It? Journal of Autism and Developmental Disorders, 50, 3367-3379. https://doi.org/10.1007/s10803-019-04239-y
Phelps, K. W., Hodgson, J. L., McCammon, S. L., & Lamson, A. L. (2009). Caring for an Individual with Autism Disorder: A Qualitative Analysis. Journal of Intellectual & Developmental Disability, 34, 27-35. https://doi.org/10.1080/13668250802690930
Richler, J., Bishop, S. L., Kleinke, J. R., & Lord, C. (2007). Restricted and Repetitive Behaviors in Young Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 37, 73-85. https://doi.org/10.1007/s10803-006-0332-6
Rutherford, M., McKenzie, K., Forsyth, K., McCartney, D., O’Hare, A., McClure, I., & Irvine, L. (2016). Why Are They Waiting? Exploring Professional Perspectives and Developing Solutions to Delayed Diagnosis of Autism Spectrum Disorder in Adults and Children. Research in Autism Spectrum Disorders, 31, 53-65. https://doi.org/10.1016/j.rasd.2016.06.004
Sheehan, R. (2018). Autism Assessment and Diagnosis: Evaluation of a Multi-Disciplinary Service for Adults in London, UK. In The 26th European Congress of Psychiatry (p. 450). https://doi.org/10.26226/morressier.5a6ef3eed462b80290b578c8
Smith, L. E., Maenner, M. J., & Seltzer, M. M. (2012). Developmental Trajectories in Adolescents and Adults with Autism: The Case of Daily Living Skills. Journal of the American Academy of Child & Adolescent Psychiatry, 51, 622-631. https://doi.org/10.1016/j.jaac.2012.03.001
Talari, S., Balaji, K., & Stansfield, A. J. (2017). What Is the Association between ADI-R Scores and Final Diagnosis of Autism in an All IQ Adult Autism Diagnostic Service? Advances in Autism, 3, 250-262. https://doi.org/10.1108/aia-05-2017-0012
Taylor, I., & Marrable, T. (2011). Access to Social Care for Adults with Autistic Spectrum Conditions. SCIE and University of Sussex.
Warfield, M. E., Crossman, M. K., Delahaye, J., Der Weerd, E., & Kuhlthau, K. A. (2015). Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD). Journal of Autism and Developmental Disorders, 45, 2209-2217. https://doi.org/10.1007/s10803-015-2386-9
Willig, C. (2013). Introducing Qualitative Research in Psychology. McGraw-Hill Education.