Helpful or Harmful? a Scoping Review of Autism Spectrum Disorder Diagnostic Disclosure

Background:  People with autism spectrum disorder (ASD) often experience stigma, bullying, and social exclusion, perhaps due to the ‘invisibility’ and social deficits of ASD (Broady, Stroyle, & Morse, 2015; Chambres, Auxiette, Vansingle, & Gil, 2008; Humphrey & Lewis, 2008; Nowicki & Sandieson, 2002). For these reasons, deciding to disclose a diagnosis of ASD to others represents an important life decision for persons with ASD and their families. Diagnostic disclosure may affect stigma and social inclusion, as well as other aspects of everyday life, yet little is known about diagnostic disclosure for individuals with ASD. Research investigating the positive and/or negative implications of disclosure or non-disclosure can help inform the decision-making processes for people with ASD and/or their families, and benefit professionals to whom parents and people with ASD often turn for advice and support.

Objectives: To identify, describe and summarize existing literature on outcomes and perceptions of disclosure or non-disclosure of an ASD diagnosis to others (e.g., teachers, peers, employers).

Methods: A scoping review of scientific literature using Arksey’s and O’Malley’s (2005) methodological framework was conducted. Relevant English-language databases (PsycInfo, ERIC, CINAHL, Medline, and SocINDEX) and reference lists were searched using terms related to ASD (e.g., autis*, ASD, pervasive develop* dis*), disclosure (e.g., reveal*, divulge*), and perspective (e.g., attitude*, accept*). Studies that focused on disclosure to the person with ASD and/or his parents were excluded. Search was limited to studies available in English published between 2004 and the present. Thematic analysis was conducted using mind mapping (Davies, 2011) procedures.

Results:  Twenty-seven articles met the inclusion criteria. These articles focused on outcomes for children (n=9), adolescents (n=5), and adults (n=13) diagnosed with ASD. Perspectives of disclosure from two standpoints were presented: from persons diagnosed with ASD (n=15), and from the perspective of others (n=14) (two articles included both perspectives). Knowing one’s diagnosis appeared to alter views of persons with ASD. However, there was disconnect in perspectives between others (e.g., peers, general public without ASD) and persons with ASD. Results suggest that others perceive that diagnostic disclosure has positive effects on social acceptance and perceptions of disability (e.g., decreases negative behavioral attributions) for children and adolescents with ASD, especially when explanatory information about ASD was provided with the ASD label. Existing research also supports an assumption by others that diagnosis should and will be disclosed. Studies on the perspective of persons with ASD (most of whom were adults) indicated that they were generally reluctant to disclose their diagnosis due to perceived stigma. Disclosing their diagnosis was perceived to lead to negative outcomes.

Conclusions: Existing research suggests that disclosing a diagnosis of ASD will positively impact social acceptance by others, at least for children or adolescents with ASD. However, adults with ASD perceive stigma related to an ASD label. Professionals and the general public should be aware of their assumptions related to ASD and diagnostic disclosure. More research on the processes and outcomes of diagnostic disclosure in ASD, across the lifespan, is warranted.