Compensatory strategies below the behavioural surface in autism: a qualitative study, by Lucy Anne Livingston, Punit Shah, Francesca Happé.

Summary

Background

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.

Methods

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:

Findings

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:

COGNITIVELY  TAXING

"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

SHALLOW  COMPENSATION

"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.”

Female, diagnosed, aged 41–50 years

"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.”

Female, non-diagnosed, aged 25–30 years

DEEP  COMPENSATION

"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

BEHAVIOURAL  MASKING

"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.”

Female, non-diagnosed, aged 25–30 years

INDIVIDUAL  DIFFERENCES

"Adaptability…my bad-ass superpower. I've learned to survive no matter what.”

Female, self-identified, aged 51–60 years

SOCIAL  MOTIVATION

"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

FOR  OTHERS

"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

ENVIRONMENTAL  DEMANDS

"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.”

Female, diagnosed, aged 25–30 years

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.”

Female, diagnosed, aged 41–50 years

"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.”

Female, diagnosed, aged 51–60 years

LATE  DIAGNOSIS

"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.”

Male, self-identified, aged 41–50 years

"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.”

Male, self-identified, aged 41–50 years

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.”

Female, diagnosed, aged 31–40 years

"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.”

Male, self-identified, aged 41–50 years

"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.”

Female, diagnosed, aged 31–40 years

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.”

Male, diagnosed, aged 25–30 years

AN  ONGOING  CHALLENGE

“I still have no clues about what can I do to make it better. I'm more alone than ever.”

Male, self-identified, aged 41–50 years

Interpretation

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.

https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(19)30224-X/fulltext

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.