Study: Autism Diagnosis Even After Age 50 Positively Impacts Patients’ Lives
Adults who receive an autism diagnosis later in life say they are better able to understand themselves and begin to seek the help they need, according to a small British study that underscores the importance of identifying symptoms of autism spectrum disorder in this aging population.
December 10, 2019
Older adults with previously undiagnosed autism spectrum disorder (ASD) benefit considerably from a professional diagnosis — even late in life — according to a study published last month in Health Psychology & Behavioral Medicine1
The study, conducted by scientists at the University of Cambridge, found that an autism diagnosis after age 50 can be a positive experience that allows for a “reconfiguration of self and an appreciation of individual needs.” The findings were based on interviews conducted with nine patients in this cohort who recounted their experiences before and after receiving a recent autism diagnosis.
The patients — five women and four men — generally spoke about the usefulness of a diagnosis and subsequent support and coping strategies; many said they were aware of being different from a young age. Several of the interviewees also reported being misdiagnosed with depression, anxiety, and other mental health conditions prior to their autism screening.
The participants all appeared to have had characteristic symptoms of autism as children, such as exhibiting repetitive behaviors and experiencing social isolation. Many were pushed to seek a diagnosis, albeit late, after concerns over social functioning and relationships became “untenable.” Diagnosis came with a combination of emotions, including feelings of vindication and overall clarity. Post diagnosis, participants said they had better self-awareness, and were more readily able to take control of their lives and address previously difficult situations.
One participant, for instance, was able to better understand his aversion to bright light, while another participant felt better able to plan and prepare for situations. Another interviewee with asthma said his diagnosis helped him get off his inhaler, and he is better able to connect shortness of breath with anxiousness tied to autism.
The researchers say the study is the first to “report the alienation that older adults feel living without knowledge of their condition and the first to look at an older age group.” They stress, therefore, the need for health care professionals, social workers, and clinicians to watch carefully for signs of autism in older adults. Detecting autism symptoms in adults requires different guidelines and tools than does screening for autism in children, which often focuses on language delay and motor development, the researchers note.
While participants reported greater self-awareness after their diagnosis, the study also suggests that professional help should immediately follow a diagnosis to help the patient best cope. None of the study’s participants, the researchers point out, have received help from trained therapists; they all said they did not feel supported by structures in place (in the United Kingdom) aimed at support and care. If anything, the participants reported the helpful role of online groups in receiving information and support.
Given how poorly autism was understood and recognized 50 years ago, the study suggests that there are likely many older adults living with undiagnosed autism today. “Future research needs to gain an estimate of the number of undiagnosed cases of autism in older adults, and this may partly be achieved by screening older adults who are currently accessing mental health services.”
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1 Stagg, S., Belcher, H. (2019). Living with autism without knowing: receiving a diagnosis in later life. Health Psychology and Behavioral Medicine, 7:1, 348-361, DOI: 10.1080/21642850.2019.1684920
