An autism diagnosis in later life does not impact quality of life – study

Science and Health

Getting diagnosed with autism in your adult years does not often impact a person’s quality of life, a study published on June 14 found. 

The peer-reviewed article, which is published in the academic journal Autism, found that the age that someone becomes self-aware of their autism is a more important indicator for quality of life than an official diagnosis. 

The research also listed household income as a more precise indication of quality of life compared to autism diagnosis. 

“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,” explained Dr Punit Shah, Co-author and Associate Professor at the University of Bath.

What is autism?

“Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. People with ASD often have problems with social communication and interaction, and restricted or repetitive behaviors or interests. People with ASD may also have different ways of learning, moving, or paying attention,” according to the Center for Disease Control and Prevention (CDC.)

A child with autism plays with other children (file) (credit: REUTERS)

The World Health Organization reported that 1 in every 100 children has autism.

The CDC lists these as possible signs that a child has autism:

• Avoids or does not keep eye contact

• Does not respond to name by 9 months of age

• Does not show facial expressions like happy, sad, angry, and surprised by 9 months of age

• Does not play simple interactive games like pat-a-cake by 12 months of age

• Uses few or no gestures by 12 months of age (for example, does not wave goodbye)

• Does not share interests with others by 15 months of age (for example, shows you an object that they like)

• Does not point to show you something interesting by 18 months of age

• Does not notice when others are hurt or upset by 24 months of age

• Does not notice other children and join them in play by 36 months of age

• Does not pretend to be something else, like a teacher or superhero, during play by 48 months of age

• Does not sing, dance, or act for you by 60 months of age

• Lines up toys or other objects and gets upset when order is changed

• Repeats words or phrases over and over (called echolalia)

• Plays with toys the same way every time

• Is focused on parts of objects (for example, wheels)

• Gets upset by minor changes

• Has obsessive interests

• Must follow certain routines

• Flaps hands, rocks body, or spins self in circles

• Has unusual reactions to the way things sound, smell, taste, look, or feel

Autism in adults may present itself differently than in children. The United Kingdom’s National Health Service (NHS) lists these as signs of autism in adults:

• finding it hard to understand what others are thinking or feeling• getting very anxious about social situations

• finding it hard to make friends or preferring to be on your own

• seeming blunt, rude or not interested in others without meaning to

• finding it hard to say how you feel

• taking things very literally – for example, you may not understand sarcasm or phrases like “break a leg”

• having the same routine every day and getting very anxious if it changes

• not understanding social “rules”, such as not talking over people

• avoiding eye contact

• getting too close to other people, or getting very upset if someone touches or gets too close to you

• noticing small details, patterns, smells or sounds that others do not

• having a very keen interest in certain subjects or activities

• liking to plan things carefully before doing them

The NHS added that there may be difference in the way that autism is experienced by men and women.

How did the researchers come to this conclusion?

The researchers interviewed 300 adults with autism and collected data on when they first learned they were autistic, alongside demographic information about their income, educational background, employment status, age, presense of mental health problems, and ethnicity.

The participants 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?,” alongside other questions to gage their  physical, psychological, social, environmental wellbeing. 

What were the results of the research?

The researchers found that the correlation between age of diagnosis and quality of life was incredibly weak, especially compared to other factors. 

It was found that women with autism had reported a better quality of life than men with autism. Additionally, people with autism that suffer from mental health problems report a lower quality of life.

“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,” explained  Dr Florence Leung, the lead researcher.

“Additionally, being male and having additional mental health conditions was linked with poor quality of life. 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.”

Growing trend of later-in-life autism diagnosis 

“More and more people are finding out they are autistic for the first time as an adult, which can be a life-changing realisation. 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,” said Dr Lucy Livingston, Senior Research Fellow at the University of Bath and Lecturer in Psychology at King’s College London.

“Our findings did not suggest this. For some people, 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.”