Imagine navigating life with a sense of being different, yet never quite understanding why. This is the reality for many adults who receive an autism diagnosis later in life, as explored in the article "Exploring Lived Experiences of Receiving a Diagnosis of Autism in Adulthood: A Systematic Review" by Juwayriyah M. Nayyar, Alison V. Stapleton, Suzanne Guerin, and Cliodhna O’Connor.
The Journey to Diagnosis
For many adults, the path to an autism diagnosis is fraught with obstacles. They often learn about autism through social networks, media, or their children's diagnoses. Some approach the diagnostic process seeking confirmation of their suspicions, while others find themselves in crisis, overwhelmed by the demands of adulthood. The journey is marked by struggles to get diagnosed, facing barriers such as inappropriate diagnostic practices, lack of access to specialists, and high costs. These challenges can be compounded by the difficulty of communicating their experiences without the right language or understanding.
Life After Diagnosis
Receiving a diagnosis can be both a relief and a revelation. It provides a framework for understanding lifelong difficulties, but it also brings to light the costs of a late diagnosis. Adults often reflect on their past, realizing how their undiagnosed autism led to feelings of being "different but wrong," social isolation, and vulnerability to mistreatment. The diagnosis can validate their experiences, yet it also exposes them to stigma and discrimination, both before and after the diagnosis.
Forging a New Identity
The diagnosis is a pivotal moment, setting adults on a path to forging an autistic identity. It helps them understand and accept themselves, often leading to a stronger sense of self and connection with the autistic community. This process involves biographical reflection, reinterpreting past experiences through the lens of autism. Engaging with the autistic community provides a sense of belonging and shared experiences, reshaping their conceptions of normality and promoting a positive autistic identity.
The Take-Home Message
Receiving an autism diagnosis in adulthood is a complex and transformative experience. It offers clarity and a sense of belonging, but it also highlights the ongoing struggles and stigma faced by autistic adults. Understanding these experiences is crucial for developing better support systems and services that cater to the unique needs of this population.
Citation
Nayyar, J. M., Stapleton, A. V., Guerin, S., & O’Connor, C. (2025). Exploring Lived Experiences of Receiving a Diagnosis of Autism in Adulthood: A Systematic Review. Autism in Adulthood, 7(1). DOI: 10.1089/aut.2023.0152.