The Consequences of Compensation in Autism

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Research suggests that a higher IQ might enable greater ability to compensate.
Research suggests that a higher IQ might enable greater ability to compensate.

One of the biggest challenges faced by individuals with autism spectrum disorder (ASD) is finding ways to be happy and successful in a neurotypical world that operates on different assumptions and "rules" than what feels natural to an autistic brain. Researchers are now more closely examining how some people with ASD try to camouflage or compensate for their difficulties, and the price they pay emotionally, cognitively, and physically for doing so.

No single definition of compensation exists, but in a recent article published in Neuroscience & Biobehavioral Reviews, Lucy Anne Livingston and Francesca Happé, FBA, from King's College London in the United Kingdom, proposed a working definition that can be applied to various conditions: "the processes contributing to improved behavioural presentation of a neurodevelopmetnal disorder, despite persisting core deficit(s) at cognitive and/or neurobiological levels."1

Their article is 1 of several recent attempts to provide a hypothetical framework for understanding compensation in ASD. One, a qualitative study by Laura Hull, a PhD student at University College London, and colleagues, identified 7 themes of "camouflaging" based on questionnaires on the experiences of 92 adults with ASD (55 women, 30 men, and 7 people who self-identified as "other gender.")2 Just more than half were British, although 15 nationalities were represented. Participants were at least 16 years old and had received a clinical autism diagnosis.

Hull and colleagues perceived compensation to be 1 type of camouflaging and explored motivations for camouflaging, what it looks like, and its consequences.

"We suggest that the overall impact of compensation and masking really depends on the individual, and the strategies they are using," Hull told Neurology Advisor. "Most qualitative research has suggested that masking of autistic characteristics leads to negative outcomes, such as exhaustion, lack of support, and feeling like your true self is being hidden," she said. "However, some people also say that their compensation and masking strategies have allowed them to make friends, form relationships, and get jobs they enjoy."

Motivations and Ways of Compensating

One major reason for compensation identified in Hull's study was the desire or need to assimilate into society. Respondents felt they needed to "blend in with the normals" to be accepted, and many camouflaged their autistic traits or behaviors to get a job or similar opportunity. Some also did it for their physical safety and well-being: several reported being ostracized, verbally or emotionally abused, or even physically assaulted. The other main motivation was to connect with others, both to build relationships and to reduce the stress of fearing they would say or do the wrong thing in a social situation.

Hull and colleagues identified camouflaging as either compensation or masking. The former included playing a character who acts socially appropriately and creating "rules" for themselves in social situations that others might expect, even if they seemed unnecessary. Respondents described mimicking others' behaviors (based on personal observation or even films or television), planning ahead for conversations (such as asking others questions instead of talking about themselves), forcing themselves to make and maintain eye contact, consciously trying to display facial expressions that expressed certain emotions, and suppressing behavior like stimming.

Consequence of Inadequate Identification and Treatment

One consequence of compensation is countering stereotypes about autism. That includes the positive opportunity to educate others and hopefully improve public perception and understanding of autism. However, some may mask their difficulties so well that parents, teachers, or clinicians do not believe they need help.2

If the difficulties experienced by people with ASD are underestimated, they may not receive adequate support or accommodations, Hull told Neurology Advisor. "For instance, requests for more time to process spoken instructions might not be given if the provider sees the person compensating by nodding and smiling while the other person talks, even though they have not actually understood what is being said," she said.

Both studies cite a fair amount of research suggesting that females may be more successful at compensating and that this success may explain underdiagnosis and misdiagnoses among women with ASD.

Hannah Belcher, an associate lecturer at Anglia Ruskin University, Cambridge, United Kingdom, understands camouflaging from both the professional perspective, as a PhD student studying it, and a personal one, as a woman with ASD.

"Being both autistic and an autism researcher can be a bit of a juggling act: it feels like wearing 2 very different hats sometimes," Belcher told Neurology Advisor.

"The most important thing I'd like to convey is that ASD is not just a collection of impairments; it includes lots of strengths and abilities as well, which need to also be taken into account," she said. At the same time, Belcher drew attention to the dangers of studying ASD as a "disease" and incorrectly regarding the spectrum as moving from "mild" to "severe."

"A very high functioning woman, for example, who has learnt to camouflage her autism, may be rated by professionals as having very mild autism, when in fact she suffers a great deal with mental health problems as a result of constantly trying to appear 'normal,' " Belcher told said. "There's a lot more people with autism than we know of, and a lot of those people will be having a very difficult time. Professionals need to be more sensitive in their diagnosis of autism, and move away from these very black and white tick boxes of what autism is."

Other Consequences of Compensation

Although compensating for their difficulties may help people with ASD connect with others, get jobs, and successfully navigate social situations, accumulating research suggests it can also lead to exhaustion, burnout, anxiety, and depression.2

"By far the most consistent consequence of camouflaging described by respondents was exhaustion," Hull and colleagues wrote. "Camouflaging was frequently described as being mentally, physically, and emotionally draining; requiring intensive concentration, self-control, and management of discomfort."2

People with ASD who camouflage also reported feeling that they misrepresent their true selves and are lying to others, with negative implications for their self-perception and self-esteem.2 Some felt relationships they developed while camouflaging were "false" because they were based on deception, and others "felt that by hiding their [ASD] characteristics, they were betraying the [ASD] community as a whole." Some even feared greater public awareness of camouflaging because it may "out" them.

"This concern suggests that research and public education regarding camouflaging needs to be performed in consultation with a range of people from the [ASD] community to ensure that increasing information helps rather than harms," Hull and colleagues wrote.2

They also discussed how the stresses of compensation might increase the risk for depression and anxiety. Livingston and Happé similarly suggest the demands of compensation might explain the high prevalence of mental health problems in compensating individuals, especially those diagnosed as adults.1 One study found 53% of people with ASD diagnosed in adulthood had previously sought mental health services earlier in life and had high anxiety and depression levels.3 Two thirds (66%) of a similar group in another study reported suicidal ideation, a much higher proportion than found among adults with ASD who were diagnosed in childhood or adolescence.4

Mechanisms of Compensation

Researchers still lack understanding about the neurological mechanisms for compensation. In a separate study, Livingston and colleagues assessed 136 adolescents with ASD on cognitive tasks, on the Autistic Diagnostic Observation Schedule, and with an anxiety questionnaire.5 They used the Autistic Diagnostic Observation Schedule scores to determine which participants were "high" and "low" compensators. They found higher IQs, stronger executive function, and greater self-reported anxiety among the high compensators compared with low compensators, with no other differentiating characteristics between the two.

Livingston and Happé1 suggest that a higher IQ might enable greater ability to compensate, or that "the propensity to compensate early in life might drive IQ throughout development." They also note that stronger executive function may help compensation.

Anxiety, in contrast, could go both ways, suggests Glen Elliott, MD, PhD, chief psychiatrist and medical director of Children's Health Council in Palo Alto, California.

"Anxiety is either driving the reason they try to compensate [eg, to fit in], or it's resulting from their real inability to compensate," Dr Elliott told Neurology Advisor. He said adolescents typically start to recognize in their midteens how different they are from their peers and develop anxiety, 1 of the most common reasons teenaged patients visit him.

Livingston and Happé also note that the environment can facilitate or impede compensation: the former might involve explicitly stated social rules, which is different from environmental accommodation specifically for a person with ASD, and the latter occurs when a person cannot "keep up" with increasing demands in their environment.1

Clinical Implications for Practitioners

Livingston and Happé offer several clinical implications for the existence of compensation. It may explain divergent outcomes among individuals with ASD with similar childhood behavior, and it may contribute to underdiagnosis or misdiagnoses. Further, those who experience the same sociocognitive difficulties as other people with ASD but who compensate well enough not to reach the diagnostic threshold may have the greatest risk for mental health problems, an idea that may help explain the controversial idea of "remission" in people who no longer meet diagnostic criteria.1

The evidence supporting a mismatch between a person with ASD's social behavior and 1 or more objectively measured cognitive deficits "casts doubt on claims that some autistic people may genuinely transition off the autism spectrum [such as] research describing children who reach 'optimal outcome' after early behavioral intervention," Livingston and Happé wrote.

The risk of missing a diagnosis or misdiagnosing someone who compensates well is particularly challenging for providers, Dr Elliott told Neurology Advisor.

"From a clinical point of view, you can have a variety of ways of dealing with a blind spot, but it's still there," Dr Elliott said. "Similarly, these compensatory mechanisms are not as robust if they get into a stressful situation or new job or something where the mechanism that they learned doesn't apply, and then you still have the underlying lack of generalization and rigidity."

Hull told Neurology Advisor that her team is developing ways to measure and identify camouflaging in individuals with ASD. These findings may lead to screening tools, which could be especially important for high-compensating females whose diagnoses are often delayed.

"If females score highly on these measures, it suggests that clinicians should take a deeper look at their autistic characteristics and see if they might meet the diagnostic criteria in more subtle ways," Hull told Neurology Advisor. "For children and those who are less able to reflect on their own behaviors, looking at changes in behavior across different settings may be useful for clinicians," she added. "Many girls can compensate and mask relatively well at school, but become exhausted and experience burnouts and meltdowns once they get home."

Hull et al also acknowledge, however, that their findings are not generalizable: their study population was self-selecting, and they were not aiming to estimate compensation prevalence among people with ASD. Further, their participants represent only those with the cognitive and self-reflecting abilities to fill out the written questionnaire in English. The respondents may be better at camouflaging than other people with ASD, or those with greater intellectual disability or poor verbal skills have different or fewer compensatory strategies.

"Camouflaging and compensation should be assessed, discussed, and managed in collaboration with the autistic individual and their family as necessary," Hull told Neurology Advisor. "By giving individuals greater agency over their behaviors, both in terms of developing skills to perform camouflaging behaviors and choosing not to camouflage when they don't want to, I hope we can maximize the benefits and minimize the harmful consequences of camouflaging and compensation."

Disclosures: Hull's study was funded by the Centre for Addiction and Mental Health, The Hospital for Sick Children in Toronto, the Autism Research Trust, Autistica, the National Institute for Health Research, and the MRC and Wellcome Trust. Livingston and Happé's articles were funded by the Medical Research Council. All authors and interviewees reported having no conflicts of interest.

References

  1. Livingston LA, Happé F. Conceptualising compensation in neurodevelopmental disorders: reflections from autism spectrum disorder. Neurosci Biobehav Rev. 2017;80:729-742.
  2. Hull L, Petrides KV, Allison C, et al. "Putting on my best normal": social camouflaging in adults with autism spectrum conditions. J Autism Dev Disord. 2017;47(8):2519-2534.
  3. Geurts HM, Jansen MD. A retrospective chart study: the pathway to a diagnosis for adults referred for ASD assessment. Autism. 2012;16:299-305.
  4. Cassidy S, Bradley P, Robinson J, Allison C, McHugh M, Baron-Cohen S. Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study. Lancet Psychiatry. 2014;1:142-147.
  5. Livingston LA, Colvert E, Bolton P, et al. Good social skills despite poor theory of mind: exploring compensation in autism spectrum disorder [published online March 26, 2018]. J Child Psychol Psychiatry. doi: 10.1111/jcpp.12886
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