Strategies to compensate for autism may delay diagnosis and boost poor mental health

Author: Caroline White
Strategies to compensate for autism may delay diagnosis and boost poor mental health

Compensatory strategies — techniques to camouflage autism — may increase social integration, independence, and employment prospects, but may also heighten the risk of poor mental health and delay diagnosis, suggest preliminary findings, published in The Lancet Psychiatry today.

The qualitative study* of 136 adults highlights the need for increased awareness of these strategies among clinicians and for greater support for those who need it, conclude the researchers. 

Autism spectrum disorder is characterised by difficulties communicating with others and by repetitive and restricted behaviours.

Among those affected, compensatory strategies may include the use of past experience or logic to respond to social situations to “fit in”. But the autism continues at a neurocognitive level. 

The study authors recruited 136 participants via social media and the National Autistic Society: 58 had a clinical diagnosis, 19 self-identified without a formal diagnosis; and 59 were not diagnosed or self-identified, but reported social difficulties.

The study looked at what compensatory strategies participants used, whether the strategies used were similar in diagnosed and undiagnosed people, and how compensatory strategies affected diagnosis. 

The participants were asked to complete a 10-item autism spectrum questionnaire and then a series of open questions about their social compensatory strategies. They were also asked how successful and tiring they felt their strategies were, and how likely they would be to recommend them to others with social difficulties. 

The team identify several strategies used by people with and without an autism diagnosis.

These included behavioural masking such as holding back true thoughts or suppressing atypical behaviours; shallow and deep compensation, such as planning and rehearsing conversations or learning rules about verbal and non-verbal behaviours; and accommodation strategies, such as going out of your way to be helpful. These were used equally by people who had been formally diagnosed with autism and those who hadn’t. 

There were wide-ranging motivations for using these strategies, which were more difficult to maintain when the individual was stressed or tired, most notably social motivation and a desire to develop meaningful relationships. There was also a perception that people who aren’t autistic could “see through” these strategies.

Use of these strategies was linked to poor mental health, and autism diagnosis and support also seemed to be affected: 47 out of 58 of the participants with a confirmed diagnosis were diagnosed late in adulthood. The other 11 were diagnosed before the age of 18.

External environments affected compensation and it may be the case that people with autism present as ‘neurotypical’ in certain situations, but not in others, say the authors.

Clinicians should be aware of this when measuring compensation and diagnosing autism. Recent evidence suggests that only 40% of UK GPs — the first point of contact for individuals seeking diagnosis — are confident in identifying autism spectrum disorder. 

Lead author, Lucy Livingston, comments: “Until now, no study has directly investigated compensatory strategies used by autistic people in social situations. 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 adds: “This study highlights that compensation is an adaptive response to external societal pressures. This finding is in line with research that autistic people are, despite the negative impact on their wellbeing, driven to meet society’s expectations of behaviour.”

In a linked comment article,** Dr Julia Parish-Morris of the Centre for Autism Research at the Children’s Hospital of Philadelphia, USA, says: “Although many people compensate during social interaction, it can be an especially exhausting and distressing exercise for people with autism spectrum disorder.

“This finding begs the question: should subjective distress be listed in the diagnostic criteria for autism spectrum disorder? For example, DSM-5 could be revised to read: ‘Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning [-including subjective distress]’.”

* Livingston LA, et al. Compensatory strategies below the behavioural surface in autism: a qualitative study. The Lancet, July 2019.

** Parish-Morris J. Seeing the unseen realities of autism. The Lancet, July 2019