Compensatory strategies below the behavioural surface in autism: a qualitative study, by Lucy Anne Livingston, Punit Shah, Francesca Happé.
Little is known about the compensatory profile in autism; that is, people with autism spectrum disorder who show few symptoms in their behavioural presentation, despite continuing to report autism-related cognitive difficulties or differences. Even less is known about the specific compensatory strategies that these individuals use to disguise autism at the behavioural surface, both in the clinic and everyday life. It is also currently unclear whether individuals without a formal autism diagnosis, but experiencing autistic-like difficulties, use similar compensatory strategies, potentially enabling them to sit below the diagnostic threshold. This study aimed to investigate social compensatory strategies, and their effect on diagnosis and clinical outcome, in adults with and without autism.
In this study, individuals aged 18 years or older who responded to a study advert that was distributed worldwide via social media and the UK National Autistic Society formed a convenience sample. Participants self-reported their use and experiences of compensatory strategies using an online platform. Novel analyses, including a qualitative thematic approach, were used to interpret their responses and gain insight into compensatory strategies in autism:
Figure: Thematic map of the eight themes (rectangular) and 18 sub-themes (oval) in social compensation in autism ~ as listed in Quotations supporting themes and sub-themes as follow:
Between Oct 19, 2017, and Jan 2, 2018, 136 adults (58 had a clinical diagnosis of autism, 19 self-identified but were not formally diagnosed as autistic, and 59 were not diagnosed or self-identified, but nevertheless reported social difficulties) completed the online study questions. The findings suggested that there are multiple compensatory strategies with distinct characteristics, individual and environmental factors that modulate compensatory strategy use and success, positive (social relationships, independence, employment) and negative (poor mental health, late diagnosis) outcomes associated with compensatory strategy use, and that individuals without a diagnosis use compensatory strategies that are qualitatively similar to individuals with a diagnosis:
Quotations supporting themes and sub-themes:
"Constant overthinking of possibilities of what to say, how it will come across, what others are and are not saying, the connotations of every word, sentence structure, emphasis, body language, as well as all of the above combined in a giant matrix of thought!”
Male, non-diagnosed, aged 25–30 years
"It is always a make-do, perhaps like a foreign language. Even though one might have adopted it to a good extent, it's never native.”
Male, non-diagnosed, aged 31–40 years
AN UPPER LIMIT
"I think I could make ‘all the right choices’ in social situations if I could choose offline with more time to reflect and from afar, but real situations are far trickier.”
Male, self-identified, aged 25–30 years
GAP BETWEEN APPEARANCE AND INTERNAL REALITY
"It's what going on cognitively, not behaviourally and people don't see that. It's frustrating because I don't…get the support or understanding that I need.”
Female, non-diagnosed, aged 25–30 years
"We have a hell of a lot of difficulties and just because we hide them doesn't mean they don't exist.”
Female, diagnosed, aged 41–50 years
"There are obvious flaws, if you are observant – I repeat myself or use tv/film phrases and sometimes say things which are out of place.”
"These ‘unspoken’ rules do not always apply to all people and all contexts. You have to re-evaluate the situation or even the same person all the time.”
"I think I observe patterns in behaviour and then try to transfer this. So if a person is behaving x/y/z types of ways, they could be feeling or thinking what so and so people had felt. It's almost a case of systematically storing little patterns in each person and the context, so I can refer to it in future.”
Female, diagnosed, aged 25–30 years
"It's usually easier to be just like everybody else and not stand out. Often it's just easier to be another brick in the wall.”
"Adaptability…my bad-ass superpower. I've learned to survive no matter what.”
Female, self-identified, aged 51–60 years
"I strongly desire friendship, but am aware that I am not very good at initiating it and even worse at maintaining it…despite my awareness, my ability to counteract my poor social skills lags behind. In short, now I know that I am the problem, but I still don't know how to fix myself very well.”
Female, diagnosed, aged 31–40 years
COSTS VERSUS BENEFITS
"If I am having a bad day, all strategies go out the window, socialisation is no longer a priority, I just need to be alone.”
Female, diagnosed, aged 18–24 years
"Compensation is born from necessity. We have extensive experience of how cruel people are.”
Male, self-identified, aged 41–50 years
"I was simply fed up with having very few friends, being disliked and ostracised by my peers and being bullied…I finally snapped at around 16…I didn't want to screw up this time.”
Female, self-identified, aged 25–30 years
"Sensory environment. It can wipe out 100% of my ‘coping energy’ in moments.”
Female, diagnosed, aged 51–60 years
"I also perceive myself as more skilled in adulthood because I have spent most of my adult life in the UK. Rules and social norms are different here…a much easier fit for many people on the spectrum, because some of the things that come more naturally to us are valued in British culture—a certain amount of reserve, reticence, not treating everyone you meet like they are instantly a friend.”
INTERACTION IS TWO-WAY
"[I] give informed opinions about some issue of interest to my interlocutor in place of small talk…I am stuck when I meet people who have no interests and extreme extroverts.”
"With autistic people, who speak my language…it goes fantastically well most of the time. Or with some non-autistic people who are very comfortable without a lot of eye contact and social irrelevances, so don't mind me being me. Any time I'm having to pretend, it's exhausting, inauthentic, and ultimately pointless.”
"The big problem arose when my peers moved on to applying for jobs and being in the real world. I knew that I could never function, as an office boy, let alone a management consultant.”
"We assume a very normal aspect when seeing our GP…video recording standard behaviour is the only way that a GP could actually witness what other people see.”
LOOKED TOO NORMAL
"I think I'm f***ed either way…because people think that I can take more of their s*** if I compensate than I actually can.”
"Alot of people who know me superficially express surprise that I am autistic. I don't take it as a compliment and I often want to respond with ‘Do you realise how much damn hard work it is to seem this normal?’”
Transgender female, diagnosed, aged 41–50 years
HEALTH AND WELLBEING
"I have planned three methods for my own suicide…I have lost great people in my life and destroyed previous careers and relationships. All of this, I put down to compensating.”
Male, diagnosed, aged 25–30 years
"The worst aspect of my compensation techniques is that they work on the basis that I am not good in social settings and so by acting out my compensation techniques I reinforce this idea that I am bad at socialising and [this] lowers my confidence.”
Male, non-diagnosed, aged 18–24 years
A ROLE IN SOCIETY
"It cuts down the pain and makes me employable. …To not compensate would make life more unhappy for me and those with whom I force to interact with me.”
"I have little energy left at the end of the workday, I can't keep up with the cleaning of my house or feed myself. It's hard to imagine myself as a mother…it's not because I'm not competent.”
SELF AND SOCIAL RELATIONSHIPS
"The inability to mask or compensate beyond the initial stages of a relationship has meant I have never developed the social capital which all people need to succeed.”
Male, diagnosed, aged 31–40 years
"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.”
Female, non-diagnosed, aged 41–50 years
THINGS ARE BETTER NOW
"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.”
Female, non-diagnosed, aged 31–40 years
BALANCE IS KEY
"I am more honest now with myself and others and I limit my interactions to keep myself mentally and, therefore, physically healthy. I have more energy for twisting the world because I am twisting less of it.”
AN ONGOING CHALLENGE
“I still have no clues about what can I do to make it better. I'm more alone than ever.”
Increased awareness and measurement of compensatory strategy use in autism should guide future diagnostic guidelines, towards improved diagnostic accuracy and support for people with autism spectrum disorder whose cognitive difficulties are not immediately evident in observable behaviour.
I thought the above listed quotes from the paper might be a good means for considering, quoting and discussing the issues involved with social compensation, camouflaging or masking.
Thankyou, Deepthought. I was very glad to read that at least a little research is being done into the costs that we pay for our masking. The purely behavioural model of autism has held sway for far too long, IMHO, and the paper provides a strong argument against the stereotype of us being innately asocial creatures, which is based entirely on misreading outcomes rather than examining our intentions.
Trogluddite said:Thankyou, Deepthought. I was very glad to read that at least a little research is being done into the costs that we pay for our masking.
The costs of masking are actually pretty well understood, although until more recently only in fragmented way, but the fragments are being brought together more and more with the increase of meta-analysis. One publication like the above for instance is:
Camouflaging of autistic characteristics in social situations is hypothesised as a common social coping strategy for adults with autism spectrum conditions (ASC). Camouflaging may impact diagnosis, quality of life, and long-term outcomes, but little is known about it. This qualitative study examined camouflaging experiences in 92 adults with ASC, with questions focusing on the nature, motivations, and consequences of camouflaging. Thematic analysis was used to identify key elements of camouflaging, which informed development of a three-stage model of the camouflaging process. First, motivations for camouflaging included fitting in and increasing connections with others. Second, camouflaging itself comprised a combination of masking and compensation techniques. Third, short- and long-term consequences of camouflaging included exhaustion, challenging stereotypes, and threats to self-perception.
And then this one:
Camouflaging entails ‘masking’ in or ‘passing’ social situations. Research suggests camouflaging behaviours are common in autistic people, and may negatively impact mental health. To enhance understanding of camouflaging, this study examined reasons, contexts and costs of camouflaging. 262 autistic people completed measures of camouflaging behaviours, camouflaging contexts (e.g. work vs. family), camouflaging reasons (e.g. to make friends) and mental health symptoms. Findings indicated a gender difference in reasons for camouflaging, with autistic women more likely to endorse “conventional” reasons (e.g. getting by in formal settings such as work). Both camouflaging highly across contexts and ‘switching’ between camouflaging in some contexts but not in others, related to poorer mental health. These findings have implications for understanding camouflaging in autistic adults.
Trogluddite said:The purely behavioural model of autism has held sway for far too long, IMHO, and the paper provides a strong argument against the stereotype of us being innately asocial creatures, which is based entirely on misreading outcomes rather than examining our intentions.
The behavioural model is obviously exceedingly limited when it comes to recognizing or diagnosing invisible conditions ~ most particularly involving psychological ones, whereas the behavioural model is really useful when paired up with the psycho-social model involving in autism's case (or any other neurological types cases) considerations like the 'Double Empathy Problem' ~ where autistic people relate well with other autistic people but not so well or at all well with non-autistic people and vice versa. Here follows a link to paper from five years back covering this:
This response to Milton’s recent article on the ontological status of autism and double empathy also explores, through the lens of ‘double empathy’ and ‘theory of mind’, the issues of relationality and interaction that researchers in the fields of cognitive neuroscience and psychology hardly acknowledge. I go on to consider Wittgenstein’s criteriological view of mind, propose a synthesis of theory to describe autism, and suggest that public criteria of a non-autistic ontology enable many autistic people to eventually develop the understanding of other (non-autistic) minds that, in turn, enables them to survive, and even thrive.