Unseen, but in Plain Sight: Looking Beyond the Camouflage in Women Challenged By Social Interactions, Regardless of Autism Diagnosis

Background: There is increasing recognition that girls and women with autism do not fit standard symptom profiles and may be overlooked for diagnosis or misdiagnosed. Some women may consciously “camouflage” their impairments in order to appear more capable during social interactions and during formal assessments such as administration of the ADOS-2. Nonetheless, many of these women, including those with an ASD diagnosis as well as those in diagnostic “gray zones,” experience a variety of clinical concerns (e.g., failure to make friends and severe levels of anxiety) that lead to substantial distress and impairment in everyday life.

Objectives: We aimed to capture broad measures of social, emotional, and adaptive function in order to more deeply profile strengths and difficulties of women who find social situations challenging and distressing, who may be confused, anxious, or exhausted by social situations. Alongside standard measures such as the ADOS-2, SRS-2, and BAPQ we developed a rich battery of emotional, developmental, behavioral and interview measures administered to women and to their parents. Our goal is to inform clinical diagnosis including usual diagnostic tools and beyond.

Methods: Initial recruitment through university counseling centers, private practices, and social media identified 55 women who report symptoms associated with ASD per elevated scores (>3) on the BAPQ screening. About half of participants had an existing ASD diagnosis (diagnosed at age 3 to 35 years). Self-report questionnaires included multiple measures of social and emotional function (SRS-2, DASS-21, TSCS-2, Suicidal Behaviors Questionnaire, Gender Group Identification Scale, extensive developmental history) and additional questionnaires for parents. A subset of women (n=24) completed in-person follow-up interviews, ADOS-2, and an objective video-based measure of social cognition (TASIT-S).

Results: Preliminary analyses show extensive levels of distress across all areas of function, independent of previous diagnosis and with little convergence of ADOS scores. The sample shows consistently elevated scores for anxiety, depression and stress, with about 1/3 of the sample falling into the “severe” range. Self-concepts scores almost universally fall into the range of extreme concern, below the 3rd percentile, and there is frequent uncertainty around gender issues. We are currently analyzing qualitative interview data. For example, the comments of one undiagnosed participant described that she has no friends, despite constantly “filtering my quirks to fit in” and repeatedly engaging in a “three-step process” she believes is a failsafe formula for friendship. Questionnaire data from her mother confirmed chronic social difficulties as well as unusual interests and rigidity. Taken together, her symptoms are consistent with a diagnosis of ASD, yet she scored well below diagnostic cut-offs on the ADOS-2.

Conclusions: Beyond short-term, structured tools, multi-informant and multi-measure approaches that assess for social and emotional difficulties may be essential for assessing women for ASD, especially when there is evidence for conscious “camouflaging.” Many women with clinically-significant symptoms of ASD may not manifest them during the ADOS-2 or other structured contexts. Given the severity of internalizing disorders in this population, the need for accurate assessment and subsequent informed intervention is urgent.