Discussions about autism are frequently in the headlines and on social media these days, which has led to more people seeking a diagnosis later in life. An increasing number of people in their 20s, 30s, 40s, 50s, and even 60s are learning they are autistic, which may seem daunting at first, but new research has shown that a late diagnosis does not seem to impact one’s quality of life.
Autism is a spectrum condition that affects people in different ways. It is not a disease or illness; it just means an autistic person’s brain works differently. It is also something that you’re born with, so if you’re autistic you’re autistic for life.
Usually, people learn they are autistic in early childhood but sometimes a diagnosis comes a lot later in life. In fact, there has been an increase in people of all ages seeking a formal diagnosis in recent years, due in part to various campaigners who have worked to raise awareness of the condition and combat the negative misconceptions surrounding it. But while some have suggested that such late diagnoses can have negative impacts on a person’s mental health, a recent study has shown otherwise.
The study was conducted by researchers at the University of Bath and King’s College London, in the UK, and is the first to examine whether the age at which one becomes aware of being autistic has any impact on their quality of life. This assessment was made after accounting for other crucial social demographic information that may influence the results.
“More and more people are finding out they are autistic for the first time as an adult, which can be a life-changing realisation,” Senior Research Fellow at the University of Bath and Lecturer in Psychology at King’s College London, Dr Lucy Livingston, said in a statement. “Because we know that many autistic people experience a very poor quality of life and wellbeing, this begs the question whether finding out you are autistic earlier in life improves outcomes.”
The researchers asked 300 autistic adults to identify the age they first learned they were autistic and, crucially, how old they were when they received a formal diagnosis. The question went like this:
“Some people learn they are autistic (e.g., from a parent) at a different time to when they were diagnosed. Please indicate when you first learned you were autistic and when you were diagnosed. This can be the same age if that applies to you.”
They were also asked for details about their age, sex, ethnicity, relationship status, level of education, living status, employment status, household income, and whether they had any mental health conditions (such as anxiety and depression). The researchers also measured the participant’s level of autistic personality traits.
Participants were then asked questions about their quality of life associated with physical, psychological, social, and environmental aspects of their lives. For instance, they were asked “To what extent do you feel your life to be meaningful?” and “How satisfied are you with the support you get from your friends?”.
The results found no statistically important relationship between the age one learns they are autistic, and the different aspects related to quality of life when other factors are taken into consideration. In fact, the evidence seems to suggest that other factors had a stronger link to quality of life. Autistic women, it seems, reported a better quality of life than autistic men, while people with additional mental health conditions seem to have a lower quality of life.
So, contrary to what some have assumed, it does not look like the age one receives a diagnosis of Autism has any real impact on their life. “For some people,” Livingston added, “finding out they are autistic sooner rather than later was linked to a better quality of life. For others, finding out later was better. Overall, there was no overall link between the age they found out and their quality of life.”
"There could be many reasons for this. Getting an autism diagnosis does not always lead to any meaningful additional support, so it could be that autistic people who learn they are autistic at an earlier age did not necessarily experience a benefit to their life quality. Equally, a late diagnosis in adulthood can be a positive experience, helping people to make sense of themselves, which may improve their self-reported quality of life. The take-away message is that the impact of an autism diagnosis on someone’s quality of life is different for everyone. And there may be other, individual factors that are more important to focus on.”
Lead Researcher at the University of Bath, Dr Florence Leung, added: "Our findings revealed that having more autistic personality characteristics – irrespective of when you learn you are autistic – was the strongest link to poor outcomes across all areas of quality of life. We are now following up on this finding to look more closely at how different autistic characteristics contribute to quality of life. This will be an important step towards establishing more tailored, more efficacious support for autistic people based on their specific autistic strengths and difficulties and self-evaluation of their quality of life."
In addition, being male and having additional mental health conditions was linked to lower quality of life. As Leung explained, “These observations highlight the importance of considering support strategies that are gender-specific to have a more targeted focus on improving autistic people’s mental health, to improve their life outcomes. There has understandably been quite a lot of discussion on autism and mental health in females in recent years but, based on these findings, we should not overlook the needs to autistic males who might also be struggling.”
The study is published in Autism.