What’s in a name? The costs and benefits of a formal autism diagnosis

Arnold L. (2017). The future I’d like to see. National Autistic Taskforce. https://nationalautistictaskforce.org.uk/the-future-id-like-to-see-larry-arnold/

Astle D. E. Fletcher-Watson S. (2020). Beyond the core-deficit hypothesis in developmental disorders. Current Directions in Psychological Science, 29(5), 431–437.

Au-Yeung S. K. Bradley L. Robertson A. E. Shaw R. Baron-Cohen S. Cassidy S. (2019). Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults. Autism, 23(6), 1508–1518. https://doi.org/10.1177/1362361318818167

Bölte S. (2023). A more holistic approach to autism using the International Classification of Functioning: The why, what, and how of functioning. Autism, 27(1), 3–6.

Bureau R. Clément C. (2023). ‘Survival classes for a neurotypical world’: What French autistic adults want and need after receiving an autism diagnosis. Autism. Advance online publication. https://doi.org/10.1177/13623613231183071

Burke J. P. Jain A. Yang W. Kelly J. P. Kaiser M. Becker L. . . .Newschaffer C. J. (2014). Does a claims diagnosis of autism mean a true case? Autism, 18(3), 321–330. https://doi.org/10.1177/1362361312467709

Chapman R. (2020). Defining neurodiversity for research and practice. In Rosqvist H. B. Chown N. & A. Stenning (Eds.), Neurodiversity studies: A new critical paradigm (pp. 218–220). Routledge.

Chapman R. Carel H. (2022). Neurodiversity, epistemic injustice, and the good human life. Journal of Social Philosophy, 53, 614–631.

Cooper K. Smith L. G. Russell A. (2017). Social identity, self-esteem, and mental health in autism. European Journal of Social Psychology, 47(7), 844–854. https://doi.org/10.1002/ejsp.2297

Crais E. McComish C. S. Kertcher E. F. Hooper S. Pretzel R. Mendez L. Villalobos M. (2020). Autism spectrum disorder identification, diagnosis, and navigation of services: Learning from the voices of caregivers. Focus on Autism and Other Developmental Disabilities, 35(4), 246–256. https://doi.org/10.1177/1088357620922165

Crane L. Chester J. W. Goddard L. Henry L. A. Hill E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162. https://doi.org/10.1177/1362361315573636

Crane L. Hearst C. Ashworth M. Davies J. (2023). Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults. Autism & Developmental Language Impairments, 8. https://doi.org/10.1177/23969415231189608

Crompton C. J. Hallett S. Ropar D. Flynn E. Fletcher-Watson S. (2020). ‘I never realised everybody felt as happy as I do when I am around autistic people’: A thematic analysis of autistic adults’ relationships with autistic and neurotypical friends and family. Autism, 24(6), 1438–1448.

Daniels A. M. Halladay A. K. Shih A. Elder L. M. Dawson G. (2014). Approaches to enhancing the early detection of autism spectrum disorders: A systematic review of the literature. Journal of the American Academy of Child & Adolescent Psychiatry, 53(2), 141–152.

Daniels A. M. Mandell D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism, 18(5), 583–597. https://doi.org/10.1177/1362361313480277

Davies J. Heasman B. Livesey A. Walker A. Pellicano E. Remington A. (2022). Autistic adults’ views and experiences of requesting and receiving workplace adjustments in the UK. PLOS ONE, 17(8), Article e0272420.

Dawson M. Fletcher-Watson S. (2022). When autism researchers disregard harms: A commentary. Autism, 26(2), 564–566.

de Broize M. Evans K. Whitehouse A. J. Wray J. Eapen V. Urbanowicz A . (2022). Exploring the experience of seeking an autism diagnosis as an adult. Autism in Adulthood, 4(2), 130–140.

Durkin M. S. Elsabbagh M. Barbaro J. Gladstone M. Happe F. Hoekstra R. A. . . .Shih A. (2015). Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide. Autism Research, 8(5), 473–476.

Duvekot J. van der Ende J. Verhulst F. C. Slappendel G. van Daalen E. Maras A. Greaves-Lord K. (2017). Factors influencing the probability of a diagnosis of autism spectrum disorder in girls versus boys. Autism, 21(6), 646–658. https://doi.org/10.1177/1362361316672178

Elwyn G. Frosch D. Thomson R. Joseph-Williams N. Lloyd A. Kinnersley P. . . .Barry M. (2012). Shared decision making: A model for clinical practice. Journal of General Internal Medicine, 27, 1361–1367.

Falkmer T. Anderson K. Falkmer M. Horlin C. (2013). Diagnostic procedures in autism spectrum disorders: A systematic literature review. European Child & Adolescent Psychiatry, 22, 329–340.

Ferrous. (2021). Weird Pride Day. https://oolong.medium.com/weird-pride-day-232465b67dd9

Frith U. (2021). When diagnosis hampers research. Autism Research, 14(10), 2235–2236.

Garau V. Murray A. L. Woods R. Chown N. Hallett S. Murray F. . . .Fletcher-Watson S. (2023). Development and validation of a novel self-report measure of monotropism in autistic and non-autistic people: The monotropism questionnaire. https://osf.io/ft73y/

Harmens M. Sedgewick F. Hobson H. (2022). The quest for acceptance: A blog-based study of autistic women’s experiences and well-being during autism identification and diagnosis. Autism in Adulthood, 4(1), 42–51.

Hayes J. Ford T. McCabe R. Russell G. (2022). Autism diagnosis as a social process. Autism, 26(2), 488–498. https://doi.org/10.1177/13623613211030392

Hosozawa M. Sacker A. Mandy W. Midouhas E. Flouri E. Cable N. (2020). Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study. Autism, 24(6), 1557–1565. https://doi.org/10.1177/1362361320913671

Huang Y. Arnold S. R. Foley K.-R. Trollor J. N. (2020). Diagnosis of autism in adulthood: A scoping review. Autism, 24(6), 1311–1327. https://doi.org/10.1177/1362361320903128

Kelly B. Williams S. Collins S. Mushtaq F. Mon-Williams M. Wright B. . . .Wright J. (2019). The association between socioeconomic status and autism diagnosis in the United Kingdom for children aged 5–8 years of age: Findings from the born in Bradford cohort. Autism, 23(1), 131–140. https://doi.org/10.1177/1362361317733182

Knopf A. (2020). Autism prevalence increases from 1 in 60 to 1 in 54: CDC. The Brown University Child and Adolescent Behavior Letter, 22(6), 6–7.

Koegel L. K. Koegel R. L. Ashbaugh K. Bradshaw J. (2014). The importance of early identification and intervention for children with or at risk for autism spectrum disorders. International Journal of Speech-Language Pathology, 16(1), 50–56.

Lai M. C. Anagnostou E. Wiznitzer M. Allison C. Baron-Cohen S. (2020). Evidence-based support for autistic people across the lifespan: Maximising potential, minimising barriers, and optimising the person–environment fit. The Lancet Neurology, 19(5), 434–451.

Legg H. Tickle A. (2019). UK parents’ experiences of their child receiving a diagnosis of autism spectrum disorder: A systematic review of the qualitative evidence. Autism, 23(8), 1897–1910. https://doi.org/10.1177/1362361319841488

Lewis L. F. (2016). Exploring the experience of self-diagnosis of autism spectrum disorder in adults. Archives of Psychiatric Nursing, 30, 575–580. https://doi.org/10.1016/j.apnu.2016.03.009

Lilley R. Lawson W. Hall G. Mahony J. Clapham H. Heyworth M. . . .Pellicano E. (2022). ‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood. Autism, 26(6), 1395–1408. https://doi.org/10.1177/13623613211050694

Mandy W. (2023). The old and the new way of understanding autistic lives: Reflections on the life of Donald Triplett, the first person diagnosed as autistic. Autism, 27, 1853–1855.

Manning C. Williams G. MacLennan K. (2023). Sensory-inclusive spaces for autistic people: We need to build the evidence base. Autism, 27(6), 1511–1515.

Mottron L. (2021). A radical change in our autism research strategy is needed: Back to prototypes. Autism Research, 14(10), 2213–2220.

Nahmias A. S. Pellecchia M. Stahmer A. C. Mandell D. S. (2019). Effectiveness of community-based early intervention for children with autism spectrum disorder: A meta-analysis. Journal of Child Psychology and Psychiatry, 60(11), 1200–1209. https://doi.org/10.1111/jcpp.13073

O’Reilly M. (2021). Exploring the rhetoric of ‘burden’: The discursive positioning of the impact of psychiatric disability in child mental health assessments. In: Lester J. N. (Ed.), Discursive psychology and disability (pp. 47–75). Palgrave Macmillan.

Overton G. L. Marsà-Sambola F. Martin R. Cavenagh P. (2023). Understanding the self-identification of autism in adults: A scoping review. Review Journal of Autism and Developmental Disorders, 1–21. https://doi.org/10.1007/s40489-023-00361-x

Powell T. Acker L. (2016). Adults’ experience of an Asperger syndrome diagnosis: Analysis of its emotional meaning and effect on participants’ lives. Focus on Autism and Other Developmental Disabilities, 31(1), 72–80. https://doi.org/10.1177/1088357615588516

Ratto A. B. Reznick J. S. Turner-Brown L. (2016). Cultural effects on the diagnosis of autism spectrum disorder among Latinos. Focus on Autism and Other Developmental Disabilities, 31(4), 275–283. https://doi.org/10.1177/1088357615587501

Reed P. Giles A. White S. Osborne L. A. (2019). Actual and perceived speedy diagnoses are associated with mothers’ unresolved reactions to a diagnosis of autism spectrum disorder for a child. Autism, 23(7), 1843–1852. https://doi.org/10.1177/1362361319833676

Reed P. Osborne L. A. (2019). Reaction to diagnosis and subsequent health in mothers of children with autism spectrum disorder. Autism, 23(6), 1442–1448. https://doi.org/10.1177/1362361318815641

Rogers C. L. Goddard L. Hill E. L. Henry L. A. Crane L. (2016). Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom. Autism, 20(7), 820–831. https://doi.org/10.1177/1362361315611109

Romualdez A. M. Walker Z. Remington A. (2021). Autistic adults’ experiences of diagnostic disclosure in the workplace: Decision-making and factors associated with outcomes. Autism & Developmental Language Impairments, 6. https://doi.org/10.1177/23969415211022955

Ruiz Calzada L. Pistrang N. Mandy W. P . (2012). High-functioning autism and Asperger’s disorder: Utility and meaning for families. Journal of Autism and Developmental Disorders, 42, 230–243.

Rydzewska E. Dunn K. Cooper S. A. (2021). Umbrella systematic review of systematic reviews and meta-analyses on comorbid physical conditions in people with autism spectrum disorder. The British Journal of Psychiatry, 218(1), 10–19.

Safer-Lichtenstein J. McIntyre L. L. (2020). Comparing autism symptom severity between children with a medical autism diagnosis and an autism special education eligibility. Focus on Autism and Other Developmental Disabilities, 35(3), 186–192. https://doi.org/10.1177/1088357620922162

Samms-Vaughan M. Rahbar M. H. Dickerson A. S. Loveland K. A. Hessabi M. Pearson D. A. . . .Boerwinkle E. (2017). The diagnosis of autism and autism spectrum disorder in low- and middle-income countries: Experience from Jamaica. Autism, 21(5), 564–572. https://doi.org/10.1177/1362361317698938

Sandbank M. Bottema-Beutel K. Crowley S. Cassidy M. Dunham K. Feldman J. I. Crank J. Albarran S. A. Raj S. Mahbub P. Woynaroski T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1.

Sasson N. J. Morrison K. E. (2019). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism, 23(1), 50–59.

Shaw S. C. Fossi A. Carravallah L. A. Rabenstein K. Ross W. Doherty M. (2023). The experiences of autistic doctors: A cross-sectional study. Frontiers in Psychiatry, 14, Article 1160994.

Thomas H. Boellstorff T. (2017). Beyond the spectrum: Rethinking autism. Disability Studies Quarterly, 37(1), 1–20.

Thomas P. Zahorodny W. Peng B. Kim S. Jani N. Halperin W. Brimacombe M. (2012). The association of autism diagnosis with socioeconomic status. Autism, 16(2), 201–213. https://doi.org/10.1177/1362361311413397

Thompson-Hodgetts S. Labonte C. Mazumder R. Phelan S. (2020). Helpful or harmful? A scoping review of perceptions and outcomes of autism diagnostic disclosure to others. Research in Autism Spectrum Disorders, 77, Article 101598.

Walsh C. Lydon S. O’Dowd E. O’Connor P. (2020). Barriers to healthcare for persons with autism: A systematic review of the literature and development of a taxonomy. Developmental Neurorehabilitation, 23(7), 413–430.

Whitehouse A. J. Varcin K. J. Pillar S. Billingham W. Alvares G. A. Barbaro J. . . .Hudry K. (2021). Effect of preemptive intervention on developmental outcomes among infants showing early signs of autism: A randomized clinical trial of outcomes to diagnosis. JAMA Pediatrics, 175(11), Article e213298.

Wigham S. Ingham B. Le Couteur A. Wilson C. Ensum I. Parr J. R. (2023). Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians. Autism, 27(2), 344–355. https://doi.org/10.1177/13623613221097502

Wigham S. Rodgers J. Berney T. Le Couteur A. Ingham B. Parr J. R. (2019). Psychometric properties of questionnaires and diagnostic measures for autism spectrum disorders in adults: A systematic review. Autism, 23(2), 287–305. https://doi.org/10.1177/1362361317748245

Wilson R. B. Thompson A. R. Rowse G. Smith R. Dugdale A. -S. Freeth M. (2023). Autistic women’s experiences of self-compassion after receiving their diagnosis in adulthood. Autism, 27(5), 1336–1347. https://doi.org/10.1177/13623613221136752

Yeargin-Allsopp M. (2008). The prevalence and characteristics of autism spectrum disorders in the ALSPAC cohort. Developmental Medicine and Child Neurology, 50(9), 646.

Zeidan J. Fombonne E. Scorah J. Ibrahim A. Durkin M. S. Saxena S. . . .Elsabbagh M. (2022). Global prevalence of autism: A systematic review update. Autism Research, 15(5), 778–790.