The study, published in The Lancet Psychiatry, is based on a survey of more than 130 adults and is said to be the first to explore strategies used by people to disguise their autism spectrum disorder.
“It is a vital skill that allows me to survive in a neurotypical world”
Study participant
Researchers from King’s College London and the University of Bath found people with autism use a range of different techniques to try and “fit in” with society, from pretending to find jokes funny to rehearsing conversations.
While such compensatory strategies can help people overcome social difficulties, form relationships and boost independence and employment, the study found they can also put people under significant strain.
They may also make diagnosis more challenging, according to the research team who said their findings highlighted the need for increased awareness among clinicians.
Recent evidence suggests only 40% of UK GPs – the first point of contact for individuals seeking diagnosis – are confident in identifying autism spectrum disorder.
In all, 136 people took part in an online survey having been recruited via social media and with the help of the National Autistic Society.
Of those who took part, 58 had a clinical diagnosis of autism spectrum disorder, 19 self-identified without a formal diagnosis and 59 did not have a diagnosis or self-identify as having autism but did report social difficulties.
Participants were asked to complete a questionnaire about their autistic traits and answer questions about the social compensatory strategies they used. They also reported how successful and tiring their strategies were and the likelihood they would recommend them to others with social difficulties.
The team identified several types of strategies used by people with and without an autism diagnosis.
These included “masking” behaviour such as holding back their true thoughts or suppressing atypical behaviour like fidgeting and “accommodation” strategies such as going out of their way to be helpful or choosing to live in a foreign country “so that your differences are attributed to being foreign”.
“Until now, no study has directly investigated compensatory strategies used by autistic people in social situations”
Lucy Livingston
Meanwhile, people deployed a wide range of “shallow” and “deep” compensation strategies involving behaving in a way that did not come naturally such as laughing at “joke cues”, making eye contact and small talk, planning and rehearsing conversations and learning rules about other people’s behaviour to help them respond appropriately.
Participants described how using compensatory strategies had helped them make friends and at work.
“It is a vital skill that allows me to survive in a neurotypical world. While some people embrace my otherness, it is often not accepted in professional environments,” explained one.
Another said using the strategies had helped them avoid being “lost and lonely”.
However, participants also described feeling “like a fraud” and that they were “acting all the time” and said using compensatory strategies was stressful and hard work.
“The experience feels like you are running a marathon while non-autistics are casually walking. It is draining,” said one participant.
The study found the use of compensatory strategies was linked with poor mental health and appeared to affect the ability of the individual to gain support and an autism diagnosis.
Of the 58 people who had a diagnosis of autism spectrum disorder, 47 were diagnosed in late adulthood.
The study found different environments affected people’s use of compensatory strategies so people with autism may present as neurotypical in certain situations but not in others.
“With people I don’t know I ramp up my strategies, monitor myself a lot and I will only talk about safe topics that I know they will like,” said one participant.
This was something clinicians needed to factor in when measuring compensation and diagnosing autism, said the researchers.
“It can be an especially exhausting and distressing exercise for people with autism spectrum disorder”
Dr Julia Parish Morris
Lead author Lucy Livingston, from King’s College London, said the study backed up other research that showed autistic people were “driven to meet society’s expectations of behaviour”.
“Until now, no study has directly investigated compensatory strategies used by autistic people in social situations and we provide evidence for their existence and modulation by various factors,” she said.
“Because they present a barrier to diagnosis of autism, increasing awareness of compensatory strategies among clinicians will help detection and the provision of support for autistic people who use them,” she added.
She hoped the study, which was funded by the Medical Research Council and National Institute for Health Research, would lead to revisions to diagnostic manuals “which currently contain little guidance on compensatory strategies in autism and co-occurring mental health conditions”.
In a linked comment article, Dr Julia Parish Morris, of the Centre for Autism Research at the Children’s Hospital of Philadelphia, suggested autism diagnosis should take into account the distress caused by compensation.
“Although many people compensate during social interaction, it can be an especially exhausting and distressing exercise for people with autism spectrum disorder,” she wrote.
“This finding begs the question: should subjective distress be listed in the diagnostic criteria for autism spectrum disorder?”
https://www.nursingtimes.net/news/learning-disability/autism-disguising-strategies-present-barrier-to-diagnosis/7029860.article