Why are so many people being diagnosed with Autism?
Autism is a diagnostic term and valid social identity that describes people who share a group of genetic, neurobiological differences in information processing. Approximately 3% of the world’s population is Autistic (Maenner et al. 2020), and although there has recently been a rapid increase in the rate of diagnoses of Autism in recent years, globally, the vast majority of Autistic people remain unidentified.
This is particularly true among mature and older adults who went through their childhood and adolescence before Autism was defined or understood. If these adults did not have other noticeable differences in addition to being Autistic, such as an intellectual disability or learning delay, they would never have been offered any additional support or accommodations. Instead, they have gone through life feeling different from those around them, but without understanding why.
Known as the “lost generation” (McDonald, 2020), these individuals are more likely to have developed problems with their mental and physical health, experienced interpersonal trauma and violence, and had greater difficulty achieving an education and gaining adequate, meaningful employment. Essentially, they have been “playing life in hard mode” with devastating impacts, including higher mortality rates and shorter lifespans (Catala-Lopez et al. 2020; French & Cassidy, 2024; Hirvikoski et al. 2016).
So, while on the surface, it may look like Autism has become more common, in reality, we have barely begun to identify people who have previously been overlooked and have remained unsupported for their entire lives. As long as health professionals base their assessments on outdated stereotypes, Autistic people experiencing difficulties will continue to be overlooked and not offered any support. Furthermore, as long as there continues to be harmful stigma, discrimination, marginalisation, and government policies that target Autistic people in negative ways, there will continue to be people who will not want to consider the possibility of Autism.
This narrative must change. Identifying that you are Autistic, at any age, creates new possibilities for self-compassion, self-acceptance, and well-being. As a community, we must extend acceptance, compassion and belonging to all Autistic people, as well as better access to health services and practical accommodations that improve their quality of life.
References:
Catala-Lopez, F., Hutton, B., Page, M. J., Driver, J. A., Ridao, M., Alonso-Arroyo, A., Valencia, A., Macias Saint-Gerons, D., & Tabares-Seisdedos, R. (2022). Mortality in persons with autism spectrum disorder or attention-deficit/hyperactivity disorder: A systematic review and meta-analysis. JAMA Pediatrics, 176(4), e216401. https://doi.org/10.1001/jamapediatrics.2021.6401
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. British Journal of Psychiatry, 208(3), 232–238. https://doi.org/10.1192/bjp.bp.114.160192
Maenner, M. J., Warren, Z., Williams, A. R., Amoakohene, E., Bakian, A. V., Bilder, D. A., Durkin, M. S., Fitzgerald, R. T., Furnier, S. M., Hughes, M. M., Ladd-Acosta, C. M., McArthur, D., Pas, E. T., Salinas, A., Vehorn, A., Williams, S., Esler, A., Grzybowski, A., Hall-Lande, J.,…Shaw, K. A. (2023). Prevalence and characteristics of autism spectrum disorder among children aged 8 years: Autism and developmental disabilities monitoring network, 11 Sites, United States, 2020. MMWR Surveillance Summaries, 72(SS-2), 1–14. https://doi.org/10.15585/mmwr.ss7202a1
McDonald, T. A. M. (2020). Autism identity and the “lost generation”: Structural validation of the Autism Spectrum Identity Scale (ASIS) and comparison of diagnosed and self-diagnosed adults on the autism spectrum. Autism in Adulthood, 2(1), 13–23. https://doi.org/10.1089/aut.2019.0069