Individuals diagnosed with autism, those who are self-diagnosed, and individuals who were neither diagnosed nor self-diagnosed but who nonetheless report social difficulties use a number of compensatory strategies that have both positive and negative consequences, according to a study published in the Lancet Psychiatry.

Evidence has shown that some individuals with autism may appear neurotypical despite having autism-related cognitive difficulties or differences. Those with autism may use compensation to negotiate the neurotypical world, but these strategies may hinder the diagnosis and support of autistic individuals. Compensation may also contribute to poor mental health.

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Lucy Anne Livingston, PhD, from the Social, Genetic, and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology, and Neuroscience, King’s College London, United Kingdom, and colleagues distributed a study advertisement worldwide via social media. Participants self-reported their experience with compensatory strategies, using an online platform. The investigators used qualitative thematic approach analyses to interpret participant responses.

A total of 136 participants completed questions on the online platform. The diagnosed group consisted of 58 participants, the self-identified group had 19 participants, and 59 participants were not diagnosed or self-identified. Compensatory strategies using intellectual and executive functions to regulate social behavior enabled “passing as a neurotypical” in certain situations. Such strategies included making eye contact or asking others questions about themselves.

Compensation was more difficult to maintain when a person was stressed or distracted, and resulted in mental fatigue. Such strategies were also difficult to sustain during fast-moving social interactions. Shallow compensation, such as laughing after a joke, was difficult to apply to new social contexts, whereas deep compensation, which involves complex and flexible strategies, allowed for improvements in social cognition. Many participants used compensation because of anxiety and self-consciousness, but compensation was itself was associated with anxiety, depression, and suicidal ideation. Poor physical health was also linked to compensatory behaviors.

A high proportion of study participants were female, late-diagnosed, and well-educated, thereby reducing generalizability of the findings.

In an accompanying commentary, Julia Parish-Morris, PhD, from the Center for Autism Research, Children’s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania, Philadelphia, noted that an important takeaway from this study is that many people compensate during social interaction, and that it is especially exhausting and distressing for people with autism spectrum disorder.2

She suggested that perhaps subjective distress should be listed in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, under the diagnostic criteria for autism to account for people with autism who function in the typical range through intense compensation. “Autism has traditionally been defined via observable behaviour, but it seems high time to explore unseen aspects of the autistic experience,” Dr Parish-Morris concluded.

References

1. Livingston LA, Shah P, Happe F. Compensatory strategies below the behavioural surface in autism: a qualitative study [published online July 23, 2019]. Lancet Psychiatry. doi:10.1016/S2215-0366(19)30224-X

2. Parish-Morris J. Seeing the unseen realities of autism [published online July 23, 2019]. Lancet Psychiatry. doi:10.1016/S2215-0366(19)30295-0