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‘Compensatory strategies’ to disguise autism delay diagnosis

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Posted July 25, 2019

For the first time ever, the compensatory techniques used by people with autism to disguise their symptoms have been investigated and collated in a qualitative study published in The Lancet Psychiatry journal.

The study, conducted at King’s College London and the University of Bath, finds that the use of such compensatory strategies is associated with both positive and negative consequences. Compensation improves social relationships, increases independence and employment, but also leads to poor mental health and delayed diagnosis.

Image credit: karelinlestrange via Pixabay, CC0 Public Domain

The preliminary results – based on an online survey of 136 adults – highlight the need for increased awareness of these strategies among clinicians as well as greater support for those who need it.

Autism spectrum disorder (ASD) is characterised by social communication impairments and repetitive and restricted behaviours. There is limited understanding of why some autistic people appear neurotypical in their behaviours, despite having autism-related psychological difficulties or differences.

Compensation is an adaptive process where new behaviours are generated in order to avoid negative outcomes. It is different from ‘camouflaging’ or ‘masking’, where socially ‘undesirable’ behaviours are hidden or stopped. In the case of people with autism, people may use past experiences or logic to respond to social situations to increase opportunities and ‘fit in’ with society. However, they continue to be autistic at a psychological level and this can lead to challenges in diagnosing and supporting individuals.

Dr Punit Shah from Bath’s Department of Psychology explained: “Compensation is an important but poorly understood concept in health research. If we have an injured left leg, we use strategies – such as leaning more on the right leg or using crutches – to walk around. The same logic applies to psychological compensation, whereby psychological difficulties – as experienced by people with autism – can be ‘compensated for’ using various psychological strategies. While this might be useful, it can have downsides such as disguising symptoms from doctors and other people that might otherwise help to diagnose and manage the difficulty.

“Our study is an important advance on the concept of psychological compensation, and the first to explore the psychological strategies used by people with autism symptoms. In doing so, we will hopefully refine the diagnostic processes for autism, and develop nuanced ways of understanding and integrating people with autism into society.”

Lucy Livingston, lead author of the study from King’s College London says: “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. Neurotypical society could do more to accommodate people with autism, which we speculate might reduce the need for them to compensate.”

The authors advertised to recruit participants for their study via social media and with the National Autistic Society. 136 adults were asked to complete an online study. Of the participants, 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 into what compensatory strategies participants used and whether the strategies used were similar in diagnosed and undiagnosed people, and how compensatory strategies affected diagnosis.

The participants were asked to self-report autistic traits by completing a ten-item autism spectrum questionnaire and then a series of open questions about their social compensatory strategies. They also reported how successful and tiring their strategies were, and the likelihood of their recommending them to others with social difficulties.

The team identify several strategies used by people with and without an autism diagnosis, which were used equally by people who were formally diagnosed with autism and those who were not:

  • Shallow strategies such as laughing after joke cues were common in participants who reported more autistic traits and were linked to negative consequences of compensation. Crucially these shallow strategies are more difficult in stressful situations or when tired.
  • Participants used their intellectual and planning abilities to regulate social behaviour and follow social norms – making eye contact – preplanning social niceties – asking others questions about themselves – and switching between social rules. These strategies were more difficult when distracted or stressed, but crucially, they did not reduce participants’ internal social cognitive difficulties.

There were wide-ranging motivations for using these strategies, most notably social motivation and a desire to develop meaningful relationships.

One participant explained: “With compensation, I have a job in which people respect my work and ask for my help and opinions…I am liked by my colleagues and friends…I haven’t lived on the edge, lost and lonely, as I could have. I have been super super lucky.”

There was a perception that neurotypical individuals could ‘see through’ these strategies.

One reported: “There are obvious flaws, if you are observant – I repeat myself or use tv/film phrases and sometimes say things that are out of place.”

Another noted: “I feel like I am acting most of the time and when people say that I have a characteristic, I feel like a fraud because I’ve made that characteristic appear.”

The use of these strategies was linked with poor mental health, and autism diagnosis and support appeared to be impacted too. 111 of 126 participants formally diagnosed with autism reported delayed diagnosis in adulthood.

External environments were found to affect compensation and it may be the case that people with autism present as neurotypical in certain situations but not in others. Clinicians should be aware of this when measuring compensation and diagnosing autism. Recent evidence suggests that only 40% of UK general practitioners — the first point of contact for individuals seeking diagnosis—are confident in identifying autism spectrum disorder.

Lucy Livingston went on: “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. 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. We hope this study will lead to the refinement of 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, 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?”

The study also coincides with another theory published in the journal Behavioural & Brain Sciences via the same team at King’s College London and the University of Bath. Livingston and colleagues argue that, because many autistic adults use compensatory strategies and try so hard to fit into society, they cannot be as socially uninterested as previously assumed.

Dr Shah explained: “Growing evidence of compensatory strategies in autism leads us to theorise, for the first time, that autistic people may even have more social motivation than non-autistic people. If someone with a physical difficulty – such as an injured leg – enters a 10k race despite it being difficult for them, they arguably have greater motivation than a fit and healthy athlete doing the same run.

“In the same way, autistic people using strategies to compensate for their psychological difficulties in social settings probably have more social motivation than a non-autistic person who likely finds the same situation much easier. For a long time it was thought that autistic people are socially ‘cold’, ‘uninterested’ or ‘unmotivated’, and the research on compensation strongly suggests this is not the case. This requires further research, but it is a promising theory that will hopefully help to change societal attitudes towards adults with autism.”

Source: University of Bath

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