In The Politics of Autism, I write:
Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.
From the 2023 IACC Draft Strategic Plan:
[A]ncreasing numbers of adults are presenting to clinics for first-time diagnoses of ASD, and recent studies suggest that many adults with ASD may be unidentified and living in the community without appropriate supports84,85. Many autistic individuals diagnosed as adults report being misdiagnosed with other mental health conditions initially, such as borderline personality disorder, generalized anxiety, or mood disorders such as depression or bipolar disorder86, 87 . These misdiagnoses may result in being overmedicated or being subjected to unnecessary medical treatments. Others report receiving care for mental health conditions such as eating disorders while displaying traits of autism that were unrecognized or ignored by healthcare providers88. Thus, there is a need to improve diagnostic tools that are specific for adults. There is also a need to practitioner training to recognize traits of autism in adults.
84. Brugha TS, McManus S, Bankart J, et al. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry 2011;68:459-65.
85. Croen LA, Zerbo O, Qian Y, et al. The health status of adults on the autism spectrum. Autism 2015;19:814-23.
86. Lupindo BM, Maw A, Shabalala N. Late diagnosis of autism: exploring experiences of males diagnosed with autism in adulthood. Curr Psychol 2022:1-17.
87. Rødgaard EM, Jensen K, Miskowiak KW, et al. Childhood diagnoses in individuals identified as autistics in adulthood. Mol Autism 2021;12:73.
88. Bargiela S, Steward R, Mandy W. The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. J Autism Dev Disord2016;46:3281-94.
