“Life is masking, masking is life,” declared an autistic woman insightfully in a piece of research, testifying to the truth of the challenge faced by so many adults in concealing their true selves. This poignant sentence is the essence of the shared truth of masking, a survival strategy commonly employed by autistic adults in a desperate attempt to fit into the world of majority society. Why is this so prevalent, and what does it portend for adults who think they may be on the autism spectrum?
Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by social communication impairment, repetitive behavior, and sensory processing. Although previously diagnosed in children, the majority of adults are now obtaining diagnoses, driven by curiosity to understand themselves better and manage their specific challenges. In fact, 452 percent more US adults between the ages of 26 and 34 were diagnosed with autism between 2011 and 2022, according to a JAMA Network Open study. This is rising recognition of autism traits in adults who might not have been diagnosed when they were children.
It is not easy to get an adult autism diagnosis. Most adults are placed on lengthy waiting lists, paying top dollar and fighting to get access to specialists who can properly diagnose adult autism. Interviews are also done with those familiar with them in childhood because autism is an early-onset developmental disorder. However, as Meng-Chuan Lai and Simon Baron-Cohen note, such good informants are few, for they could be dead or unavailable.
Also, that individuals mask makes them more challenging to diagnose. Women especially and adults in general have become masters of masking so well that even the most highly regarded evaluations, like the Autism Diagnostic Observation Schedule (ADOS), will fail. Masking is more than just a social strategy; it can cause significant mental illness, including anxiety, depression, and alienation. One study of autistic adults determined that pervasive masking caused them to feel like they were not connected to who they were, and lots of them would struggle to have any notion who they are even.
Despite these barriers, diagnosis can be transformative. It offers a new language through which to describe oneself and can bring self-acceptance and identification with others who share the same qualities. For others, though, self-diagnosis suffices, relief and identification without a doctor’s stamp of approval. As researcher Sara Meyer puts it, “Diagnosis is life-changing, providing a new language for their experiences, and offering a new identity.”
Access to support and accommodation is a potential benefit of being officially diagnosed. It does not always exist, but it could open the door to work accommodations and disability services and help to sort through day-to-day routines and living in one’s world. The sad truth is that the majority of work settings are mixed as to whether they will want to accommodate, and supports vary according to specific needs.
For those confronting the hurdle of adult diagnosis for autism, there is a need to consider the advantages and disadvantages. Even if it is expensive and mentally taxing, the benefit of self-understanding and exposure to resources can be revolutionary. With the more self-defined autistic community, it is possible to establish one’s own identity and become comforted by community.
Finally, whether clinically diagnosed or self-diagnosed, the experience of learning about autism in adulthood is one of personal identity. The increase of adult diagnoses is symptomatic of the greater movement towards acceptance of neurodiversity and respect for autistic contributions to society. The greatest step one can take along this journey is finding the support and community that best fit their life and enable them to be authentically who they are and thrive.
