Individuals with undiagnosed autism spectrum disorders and those with a formal diagnosis employ similar compensation behaviors to manage social and cognitive difficulties, and undiagnosed individuals may go unrecognized, data from an online survey of 136 adults suggest.
Unlike other adaptive behaviors in psychiatry, “autistic compensators, despite apparent lack of observable autistic behavior, continue being autistic at the neurocognitive level,” wrote Lucy Anne Livingston of Kings College London, and colleagues. “Because autism spectrum disorder is diagnosed by behavior alone, compensators might not receive a diagnosis and support until later in life, if at all. “
The researchers compared compensation behaviors in adults with and without an autism diagnosis. They recruited adults aged 18 years and older through an online advertisement distributed through social media and the U.K. National Autistic Society. Participants completed an online survey during Oct. 19, 2017–Jan. 2, 2018. The study was published in the Lancet Psychiatry.
preplanning social niceties (e.g., asking others questions about themselves), and switching between social rules,” the researchers wrote.
The study population included 58 individuals with a clinical diagnosis of autism, 19 of whom self-identified as autistic but were not formally diagnosed, and 59 of whom reported social difficulties but had no formal diagnosis and did not self-identify as autistic. The average age of the three groups was 36 years, 40 years, and 34 years, respectively, and the average age at diagnosis for the diagnosed group was 30 years. Most of the individuals in each group were women (64%, 47%, and 86%, respectively). Responses were examined using a thematic analysis and thematic map.
In general, participants reported that compensation was a cognitively taxing process that served as a secondary route for social interaction because the primary route was unavailable, but that compensation strategies fell short in certain situations, such as unexpected turns of conversation. Overall, 38% of the respondents said their compensation strategies were “extremely successful” and 56% reported “somewhat successful.” However, 12% also reported their strategies were “extremely tiring,” and 36% reported “somewhat tiring.”
Factors affecting the participants’ abilities to compensate included environmental and sensory factors such as bright lights, loud noise, and large groups with unstructured social settings, such as parties. Also, transition to living independently as an adult led to problems, because compensation had allowed individuals to grow up appearing normal but lacking in additional support and strategies, the researchers noted.
Factors that contributed to successful interactions included similar interests with an interaction partner, and motivation to develop meaningful relationships. Participants also said they viewed compensation as a way to avoid ostracism and bullying. In addition, “fitting neurotypical peoples’ interaction style (e.g., eye contact or small talk) was viewed as vital for achieving life goals (e.g., independence and employment),” the researchers wrote.
In an accompanying editorial, Julia Parish-Morris, PhD, suggested the observation made by Ms. Livingston, a researcher at the Institute of Psychiatry, Psychology and Neuroscience at the college, and associates that compensation also occurs in people who do not have autism suggests that compensation might be a “general social lubricant that facilitates community living and is therefore a potentially useful tool.”
“In other words, perhaps raising awareness about compensation in autism spectrum disorder is an important first step toward eliminating the need for it,” wrote Dr. Parish-Morris, of the Center for Autism Research at Children’s Hospital of Philadelphia (Lancet Psychiatry. 2019 Jul 23. doi: 10.1016/S2215-0366[19]30294-9).
The study data were limited by the prevalence of female, well-educated, late-diagnosed individuals in the study population, which might limit the generalizability of the findings, and the lack of data on subconscious compensation because of the use of self-reports, the researchers noted.
However, “Given the individual differences found in this study, we tentatively suggest that clinicians take an individualized approach when assessing and discussing compensatory strategies with people with autism,” they said. “It will be important to establish which compensatory strategies are most beneficial, and how their success might be maximized with changes to external environments irrespective of clinical intervention.”
The researchers had no financial interests to disclose.
SOURCE: Livingston LA et al. Lancet Psychiatry. 2019 Jul 23. doi. org/10.1016/S2215-0366(19)30224-X.