Much research into autism has focused on discovering the cognitive and neurobiological atypicalities that underlie the defining behavioural symptoms that we are familiar with. However, there is another interesting question, namely, how behavioural symptoms may change during the lifetime, becoming more or less prominent.
Compensation has recently been conceptualised as:
the processes contributing to improved behavioural presentation of a neurodevelopmental disorder, despite persisting core deficit(s) at cognitive and/or neurobiological levels.
– Livingston et al (2017).
That is, autistic individuals may wish to use strategies to appear neurotypical and thus “fit in”. At the neurocognitive level, an individual has autism. But at the behavioural level, there may be a lack of observable autistic behaviour.
Why is compensation in autism important?
There are three main reasons:
- Compensation may prevent accurate diagnosis and support as autism is diagnosed through behavioural presentation;
- Support needs may be underestimated even for those with a diagnosis;
- It may lead to poor mental health outcomes.
An advert was widely circulated inviting adults to take part in this qualitative study, whether they had a formal autism diagnosis or not. The 136 participants thus formed three groups:
- Those with a formal diagnosis (58)
- Those who self-identified as autistic (19)
- Those who had no formal diagnosis and did not self-identify as autistic, but did report social difficulties (59).
The questions for the study were open-ended and presented online. Thematic analysis was used to assess three main questions, with themes identified at the semantic level rather than at an interpretative level:
- What compensatory strategies are used?
- Are these strategies qualitatively similar across the groups?
- How do compensatory strategies affect diagnosis and clinical outcomes?
The inductive thematic analysis derived themes and sub-themes from the available data. Theme endorsement was quantified (the frequency of participants who endorsed each theme and sub-theme).
Concerning group demographics, there were no significant differences of note in most areas, except for in the Autism-Quotient scores, of which diagnosed and self-identified individuals scored higher than the non-diagnosed group. The non-diagnosed group contained significantly more females than the other groups, and the self-identified group reported greater rates of eating disorders and other mental health misdiagnoses, although the numbers are very small.
The qualitative results are sizeable:
- Compensation was reported to be cognitively taxing (“have to double think all the time”), and respondents reported an upper limit because such strategies did not function in all situations or were too slow and inflexible in fast-moving social interaction: “an art, not a science… only ever partial in implementation.”
- Internal factors which drove compensatory strategies included social motivation (“I strongly desire friendship”), costs versus benefits analysis as to whether to use such strategies or not (“a bad day, all strategies go out the window”), and individual differences such as intellect and persistence.
- External factors which drove compensatory strategies included doing it for the benefit of others (“desirable for others but not myself”), environmental demands (“sensory stimuli make it harder to think”), and the fact that interaction is always two-way and therefore requires active participation and effort (“[I] wish non-autistic others would try too”).
- Compensation was found to affect quality of life in positive and negative ways: affecting health and wellbeing (“emotional toll from pretending to be normal”), self and social relationships (“denying your authentic self”), but preserving a role in society (“helps me to succeed in my dreams”).
- It appears to be a barrier to both diagnosis and support, often leading to late diagnosis (“I did well on the IQ tests and kept my head down”) and looking “too normal.”
- Respondents reported a gap between their appearance and the internal reality, whereby they experienced social cognitive difficulties that went unnoticed by others. This lead to the interesting differentiation between “shallow compensation” whereby individuals imitated without regard for context, such as always laughing at joke cues, and “deep compensation” whereby autistic individuals employed complex strategies to blend in (such as “algorithms inside my head to plot patterns of behaviour.”) While shallow compensatory strategies were poorly transferred to new contexts and infrequently reduced individuals’ social cognitive difficulties, and were more often reported by the self-reported group, deep compensation often became “second nature” over time and may have improved social cognitive abilities such as theory of mind.
- The last theme emerging from the data reflected trajectories and attitudes, encompassing compensatory strategies being “an ongoing challenge,” helpful in some scenarios as individuals progressed (“life is much easier”) and the learning that “balance is key.”
The qualitative data gathered herein is vast and rich, and provides a great resource for those wishing to understand a behavioural profile of autism in these groups of respondents. The comparison with resilience as an adaptive trajectory is prominent in terms of highlighting the importance of this work, as it is clear that compensation, at least in autistic individuals with higher intellectual ability, can be either detrimental to health outcomes or adaptive and positive for overall functioning.
Strengths and limitations
This qualitative study is rich in data and provides a wealth of opportunities for further, more specific, research into autism and compensatory strategies. The thematic analysis is thorough and appropriate. The implications of the findings are wide-ranging and of huge importance.
The authors highlight the primary limitations themselves:
- The respondents were mostly women, late-diagnosed, and well educated. The results are therefore not necessarily generalisable to all autistic individuals. Further research should look to explore compensatory strategies in men, autistic people who received diagnoses in childhood, and autistic individuals with lower intellectual ability.
- Due to the self-report nature of the study, individuals will have only reported on the motivations, strategies and impacts of compensation that they are explicitly aware of. Future work should look to explore subconscious compensatory processes.
Implications for practice
Individuals with autism frequently reported high social motivation, contrary to many viewpoints that autistic people prefer their own company. It is therefore clear that, contrary to the social motivation hypothesis of autism (Chevallier et al., 2012), social motivation is not universally impaired. Not all respondents, however, reported using compensatory strategies due to social motivation. Some were more rational and less emotionally-driven in their calculations of the need to compensate. Paying attention to the motivation of individuals is evidently key in supporting individuals to align strategies to their needs, hopefully decreasing the reported negative consequences.
The differentiation between shallow and deep compensation is of great interest, as respondents seem to suggest that deep compensation may provide a route to neurocognitive improvement such as progress in social cognition. Further research into the mechanisms of change resulting from deep strategies would be of great interest, and could even provide the starting point for interventions to improve autistic social cognition and reduce the load of disability.
The authors quote that “(neurotypical) society could do more to accommodate autistic people,” such as by attempting to abate sensory difficulties such as noise or bright lights, and even engaging in compensation themselves to adapt to autistic communication styles.
Perhaps the most important implication for practice is that individuals who engage in such strategies may go “under the radar” of professionals. They may be misdiagnosed, not receive a timely diagnosis, or may struggle to receive appropriate support once diagnosed. This research poses the question of whether individuals who just miss the criteria for a diagnosis of autism may be in fact just better compensators.
All clinicians working with autistic individuals should read and take note of this important work.
Conflicts of interest
Eloise Stark has a manuscript submitted with Prof Francesca Happé as a co-author, but had no involvement in this project. Eloise is a DPhil student in the Oxford Department of Psychiatry, as well as having a personal perspective on autism and compensatory strategies due to being diagnosed just a few years ago.
Livingston LA, Shah P, Happé F. (2019) Compensatory strategies below the behavioural surface in autism: a qualitative study. The Lancet Psychiatry Open Access Published: July 23, 2019 https://doi.org/10.1016/S2215-0366(19)30224-X
Chevallier, C., Kohls, G., Troiani, V., Brodkin, E. S., & Schutlz, R. T. (2012). The Social Motivation Theory of Autism. Trends in Cognitive Science, 16(4), 231-239.
Livingston, L. A., & Happé, F. (2017). Conceptualising compensation in neurodevelopmental disorders: Reflections from autism spectrum disorder. Neuroscience and Biobehavioral Review, 80, 729-742.