Receiving a diagnosis of autism in your 20s, 30s, 40s, 50s, or even 60s may seem daunting, but a new study from psychologists in Bath and London has found that the age at which someone gets diagnosed has little bearing on the quality of life.
Recently, a late diagnosis of autism has gained attention due to campaigner Christine McGuiness. While autism is typically diagnosed in childhood, it is increasingly being diagnosed in adults, particularly women.
Many parents wonder whether their child’s earlier or later diagnosis of autism will have a long-term impact on their lives. Meanwhile, many adults who are diagnosed with autism later in life often wonder how their lives might have been different if they had been diagnosed earlier.
In this context, a new study conducted by researchers at the University of Bath and King’s College London is the first to investigate whether the age at which individuals become aware of being autistic is associated with their quality of life. The study takes into consideration important factors such as household income.
The researchers surveyed 300 autistic adults to gather information about when they first learned they were autistic. They also collected detailed socio-demographic data including current age, sex, ethnicity, relationship status, living status, education level, employment status, household income, and the presence of additional mental health conditions. Additionally, the participant’s level of autistic personality traits was measured.
Participants then completed questions on various aspects of their quality of life, including physical, psychological, social, and environmental elements. For instance, they were asked, “To what extent do you feel your life is meaningful?” and “How satisfied are you with the support you receive from your friends?”
A study published in the journal Autism found that the age at which one becomes aware of being autistic was not statistically linked to different areas of quality of life, once other factors were taken into consideration. The study revealed that other factors, such as gender and the presence of additional mental health conditions like anxiety, were more strongly associated with quality of life. Autistic women reported a better quality of life than autistic men, while individuals with additional mental health conditions reported a lower quality of life.
Dr Lucy Livingston, a Senior Research Fellow at the University of Bath and a Lecturer in Psychology at King’s College London, mentioned that an increasing number of adults are discovering that they are autistic for the first time. This realization can have a profound impact on their lives. Given that many autistic individuals experience low quality of life and well-being, it raises the question of whether identifying autism at an earlier age leads to better outcomes.
“Our findings did not suggest that there is a universal best time for individuals to discover they are autistic. Some individuals experienced a better quality of life when they were diagnosed at an earlier age, while others had a better experience when diagnosed later. Overall, we found no consistent link between the age at which individuals were diagnosed and their quality of life.”
There are various reasons for this. Getting a diagnosis for autism doesn’t always result in getting additional support, so it’s possible that individuals who find out they are autistic at a younger age didn’t necessarily experience an improvement in their quality of life. On the other hand, receiving a diagnosis as an adult can be a positive experience, helping individuals to better understand themselves, which in turn may enhance their self-reported quality of life. The key message here is that the impact of an autism diagnosis on an individual’s quality of life varies. Additionally, there may be other personal factors that are more significant to consider.
Dr. Florence Leung, Lead Researcher at the University of Bath, stated, “Our research showed that exhibiting more autistic personality traits, regardless of when a person becomes aware of their autism, was strongly associated with poorer outcomes in various aspects of quality of life. We are now investigating this further to understand how specific autistic characteristics impact quality of life. This is an important step towards providing more targeted and effective support for autistic individuals, taking into account their unique strengths and challenges, as well as their own assessment of their quality of life.”
“Moreover, being male and having co-occurring mental health conditions were associated with lower quality of life. These findings underscore the importance of developing gender-specific support strategies to specifically address the mental health needs of autistic individuals and improve their overall well-being. While there has been considerable focus on autism and mental health in females in recent years, it is essential not to disregard the struggles of autistic males and their need for support.”
Co-author and Associate Professor at the University of Bath, Dr Punit Shah, said: “Our research more generally adds to a better understanding of neurodiversity across the lifespan. Autism, for a long time, was thought about as a childhood condition. Many still think this way. But people may not realise that most autistic people, in the UK for example, are now actually adults. With an ageing society, this pattern will increase over the next few decades, so it is critically important that we conduct more detailed investigations into individual differences amongst autistic adults, as we have done. Such autism research in adults will thereby start to reveal the many different ways in which we can understand and support autistic people right throughout their lives, moving beyond a ‘one size fits all’ approach.”