Autism: later-life diagnosis doesn't mean lower quality of life – new research

Autism: later-life diagnosis doesn’t mean lower quality of life – new research

Our research suggests the age people find out they're autistic does not necessarily impact their quality of life afterward. Lightspring/ Shutterstock

A growing number of people are discovering that they are autistic in adulthood. This is especially the case among women, with a number of celebrities – such as model and reality star Christine McGuinness and TV presenter Melanie Sykes – sharing their experiences of being diagnosed as an adult.

Having an autism diagnosis in adulthood can have benefits, but it has left some wondering what life would have been like if they’d found out earlier. In our latest study, we investigated whether getting a diagnosis at a younger age is linked to a better quality of life as an adult.

We found no link between the age people received a diagnosis and how they felt about their lives.

To conduct our study, we asked 300 autistic adults to report the age at which they learned they were autistic and detailed information about their backgrounds, including their age, sex, ethnicity, relationship status, income, education level and whether they had any mental health conditions. Recording these details was crucial as all are linked to quality of life.

We also measured participants’ self-reported level of autistic personality traits. Approximately 43% of participants were male, and around 90% of participants were white. Around half of the people in our sample learned they were autistic as a child, while the other half found out as adults.

Participants then rated how they felt about their lives by answering questions based on the World Health Organization’s quality of life scale. Some of the questions they were asked included: “To what extent do you feel your life to be meaningful?” And: “How satisfied are you with the support you get from your friends?”

A young woman speaks to her older male doctor.
We found no link between the age people found out and how they felt about their lives.
wavebreakmedia/ Shutterstock

Our results confirmed that the age a participant was diagnosed or became aware of being autistic (if they were diagnosed very young and told later by their parent) was not linked to their quality of life as an adult. This was true when the influence of other factors was considered in our analysis.

Our research also brought up an unexpected finding. Autistic women, after accounting for age, reported a better quality of life than men overall. We aren’t sure what might explain this finding, so it will be important for future studies to investigate this difference.

While in recent years there’s been a much-needed growth in research investigating mental health in autistic women, this finding suggests we must not overlook the needs of autistic men who might be struggling with their mental health.

Our study also provided further support for the link between autism and poor mental health. Autistic people who had other conditions, such as ADHD, anxiety or depression, reported a much lower quality of life than those who had none. These results reinforce the need for more targeted, personalised support to improve autistic people’s mental health and quality of life.

Our findings also reflect a fundamental shift that’s required in autism research. For a long time, autism was thought about as a childhood condition. Many people still think this way. What people may not realise is that most autistic people in the UK, for example, are adults.

With an ageing society, this pattern may increase over the next few decades. As such, it’s important to improve awareness that autism isn’t just a childhood condition. This will ensure that both research and practical support receive proportionate funding, which has historically been lacking for autistic adults. It may also help more people to get the support they need.

It will also be vital for future research to focus on highlighting the strengths that autistic adults may have, as well as looking at the difficulties they may face. This will help identify the best ways to support autistic people throughout their lives and move beyond a one-size-fits-all approach to care.

The Conversation

Lucy Anne Livingston receives or has received funding from the UKRI Medical Research Council, The Waterloo Foundation and the Economic and Social Research Council.

Punit Shah receives or has received funding from the UKRI Medical Research Council and the Economic and Social Research Council.

Florence Leung does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.