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

Getting diagnosed with autism in your adult years does not often impact a person’s quality of life, according to a new study published on Wednesday. 

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

The research also listed household income as a more precise indication of the person's quality of life compared to their autism diagnosis. 

"Our research more generally adds to a better understanding of neurodiversity across the lifespan," explained Dr Punit Shah, Co-author and Associate Professor at the University of Bath. "Autism, for a long time, was thought about as a childhood condition. Many still think this way. But people may not realize that most autistic people, in the UK for example, are now actually adults. With an aging 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.” 

What is autism?

The CDC explains that “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.” 

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

What signs may indicate that a child has autism?

• Avoiding or not holding eye contact
• Not responding to their name by nine months of age
• Not showing facial expressions like happy, sad, angry, and surprised by nine months of age
• Not playing simple interactive games like pat-a-cake by a year old
• Using few or no gestures by a year old (for example, does not wave goodbye)
• Not sharing interests with others by 15 months of age (for example, shows you an object that they like)
• Not pointing to show you something interesting by 18 months of age
• Not noticing when others are hurt or upset by two years old
• Noticing other children and joining them in play by three years old
• Not playing games that include pretending by four years old
• Not singing, dancing, or acting for you by five years old
• Lining up toys or other objects and getting upset when the order is changed
• Repeating words or phrases over and over (called echolalia)
• Playing with toys the same way every time
• Being focused on parts of objects (for example, wheels)
• Getting upset by minor changes
• Having obsessive interests
• Follow certain routines obsessively
• Flapping their hands, rocking their body, or spinning in circles
• Having 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 uninterested 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 differences 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, presence 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 gauge their physical, psychological, social and 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," explained Dr. Florence Leung, the lead researcher. "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.”

"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 and improving 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 of 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 realization," said Dr. Lucy Livingston, Senior Research Fellow at the University of Bath and Lecturer in Psychology at King’s College London. "Because we know that many autistic people experience a very poor quality of life and well-being, this begs the question of whether finding out you are autistic earlier in life improves outcomes.

"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 takeaway 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.”