First of its kind checklist may help to pick up ‘hidden’ autism in adults
Author: Caroline White
A first of its kind checklist of compensatory strategies may help GPs to pick up ‘hidden’ signs of autism in adults, say the researchers who devised it.
People with autistic-like difficulties, even if they don’t meet the strict behavioural criteria for a diagnosis may need a similar level of support, particularly as compensation is linked to poor psychological wellbeing, they explain.
Autism is usually diagnosed in childhood, but a growing number of adults are being diagnosed with the condition, even in mid-to-late adulthood. About 700,000 people in the UK are living with autism and it is underdiagnosed in women.
Many adults develop compensatory psychological strategies to hide their symptoms, making the condition much harder to diagnose and placing a huge mental strain on that individual.
In a new small study*, published in Molecular Autism, the researchers outline a checklist of 31 compensatory strategies that clinicians could look for or ask their patients about.
The checklist, which was developed by asking autistic people about their experiences of using psychological strategies in everyday social situations, includes strategies such as predicting, planning out and rehearsing conversations before they happen, out loud or in the head; mimicking phrases, gestures, facial expressions, tone of voice picked up from other people and/or TV/film/book characters; relying on props to structure and guide conversation; making eye contact, even if it is not useful for communication or counterproductive, or deliberately avoiding eye contact but giving the impression of social interest.
Using the checklist, the researchers summed up compensatory strategies in 117 adults (58 with autism, 59 without) to create numerical compensation scores.
They found that participants with an autism diagnosis or those reporting higher autistic traits, such as difficulties in reading other people’s minds, had higher compensation scores.
Dr Lucy Livingston, of Cardiff University’s School of Psychology, who led the research, said: “This allowed us to come up with a checklist of the most frequently-reported ‘social scripts’, including things like copying gestures and facial expressions of others, learning when to laugh at a joke without understanding why it is funny and deliberately making eye contact, even when it might be really uncomfortable.”
She added: “At the moment, professionals know very little about these strategies and what to look for. The new tool, if found to be effective, could help clinicians assessing adults for autism who appear to be non-autistic or ‘neurotypical’ on the surface, particularly those who are highly intelligent,” she said.
“Ultimately, this could mean that autistic people receive a more accurate and timely diagnosis.” It could also be used by adults who think they might be autistic or are seeking a diagnosis to help them understand their own behaviour, she added.
The checklist could offer a first step for clinicians to help measure compensatory strategies during autism assessments. It could also help improve awareness of more invisible features of autism to GPs, who are the first port of call for individuals seeking a diagnosis.
“Our findings have crucial implications for research and clinical practice,” write the researchers.
“We suggest that clinicians should be aware of compensatory strategies in intellectually able individuals reporting autistic-like difficulties, even if they do not meet strict behavioural criteria for ASD. Indeed, these individuals may require a similar level of support to diagnosed individuals, particularly as compensation is linked with poor mental wellbeing.”
The study used a sample that was predominantly comprised of intellectually-able women so further work would be needed to establish whether the findings are applicable to a wider autistic population, say the researchers.
*Livingston LA, Shah P, Milner V, et al. Quantifying compensatory strategies in adults with and without diagnosed autism. Molecular Autism 2020