When it comes to diagnosing autism, much discussion and emphasis are placed on early diagnosis. Nonetheless, for a variety of reasons, a number of people discover they are on the autism spectrum much later in life. For many of them, the diagnosis helped put events in the past in clearer context. Autism self-advocate Michael John Carley, who was diagnosed at 36, said, “my diagnosis explained as lifetime of puzzles.” New research is illuminating his point.
A study published in November in Health Psychology & Behavioral Medicine found that even a late diagnosis of autism spectrum disorder (ASD) – after age 50 – provides considerable benefits. As noted in the study abstract, receiving a diagnosis was “seen as a positive step and allowed for a reconfiguration of self and an appreciation of individual needs.”
Scientists at the University of Cambridge interviewed nine people (five women and four men) who described their experiences before and after receiving their diagnoses. Most of the participants knew they were different from a young age, despite not having a diagnosis, according to an article on the ADDitude website about the study. All of them had autism symptoms as children, such as social isolation and repetitive behaviors. Several were misdiagnosed with mental health conditions, including anxiety and depression.
The Positives and Negatives of Diagnosis
While diagnosis was beneficial overall, it brought mixed emotions, primarily because the study participants said they were not provided with therapy or other interventions after they were diagnosed. They did say that they were more self-aware and better able to take control of their lives and address previously difficult situations, noted the ADDitude article. In fact, it was concerns over social functioning and relationships that pushed them to seek a diagnosis.
Writing on the Spectrum website, Donald McCarthy, who was diagnosed with autism at 28, notes that “many people go more than half of their lives before learning that they are autistic; the exact number remains a mystery, as research on adults with autism has been scarce.” He advocates for an expansion of services aimed at detecting autism in children so that more children will be diagnosed early, noting that girls, children of color, and children from low-income families often slip through the cracks.
In an article written for Psychology Today, Erin Bulluss, Ph.D., and Abby Witts describe the positive shift in how they view themselves after being diagnosed as adults: “While the path to diagnosis is hardly an easy one, for us, it provided the opportunity to re-examine our ways of doing, being, and thinking. This essentially led to a positive shift in self-concept, as we let go of maladaptive core beliefs about ourselves that were rooted in a lack of understanding of our own experience.” Their lives, they write, “have now been split into pre- and post-diagnosis; taking us from a place of confusion, frustration, and obfuscation to a place of understanding, self-acceptance, and radical authenticity.”
Necessity of Post-Diagnosis Support
As the researchers noted in their paper, given the history of autism, it’s likely that many adults will receive a diagnosis of autism after the age of 50. For that reason, it’s important that health care professionals, social workers, and clinicians are able to recognize symptoms of ASD in adults. For example, all of the study participants felt different to the point of “being an alien” and experienced social isolation and peer rejection, the researchers wrote. Additionally, a representative from the UK’s National Autistic Society expressed in an article on BBC News that going so long without a diagnosis can have significant negative effects on mental health, increasing levels of anxiety and isolation.
The researchers recommended that people diagnosed late in life receive structured and comprehensive support, including help in reconfiguring their work environment to better suit their needs. Rahman Kebbie, who lives in the United Kingdom, was diagnosed in his mid-20s and is a good example of how support can make a big difference helping people deal with an adult diagnosis. Through a nonprofit, Kebbie has assistance with daily living tasks and the services of a job coach. He also participates in a support group. Even with that support, he notes in an article on Metro.co.uk that life is still often difficult primarily, he says, because autism is “invisible.”
Dr. Bulluss and Witts agree that more support is a necessity, writing that they were fortunate to have supports that not everybody who receives a late diagnosis has available. There should be, they write, “accessible, autism-positive resources… improved support in the community and clinical spaces to promote self-acceptance and well-being.”
The study authors called for future research in order to more accurately approximate the number of adults living with undiagnosed ASD. They recommended implementing ASD screenings for adults already utilizing other mental health services because of the prevalence of misdiagnosis and comorbidity with other mental health conditions. Greater awareness could also lead to more support and understanding for those diagnosed later in life.