Learning about the Lived Experiences of Women on the Autism Spectrum from an Online Community

Background

The experience of being an adult female on the autism spectrum has been understudied in the social work literature. The purpose of this study was to develop an understanding of females on the autism spectrum, from their perspective, by examining content from an online autism community website. In the age of social media, there is immediate access to technology, and access to other persons through that technology; it is important to consider how specific autism subpopulations, such as females, use social media to interact with others. Understanding the common experiences of adult women on the autism spectrum can help social workers provide better services, support, and advocacy for this population.  

Methodology

The study was a qualitative content analysis of textual data from online posts published between January 1, 2014 and December 31, 2014 on a public autism discussion forum. After the data were sorted and filtered, 1,636 posts by 212 unique women were available for analysis. Data analysis was conducted using line-by-line constant comparison to identify themes and subthemes.

Results

Limited demographic data were available on the autism community website; however, for the 212 women whose posts were analyzed, 59% were between the ages 18 and 29, 32% between ages 30 and 49, and 9% were 50 years or older. 

The four prominent themes that emerged were (a) impact of diagnosis, (b) symptom discussion, (c) impact of autism on relationships, and (d) impact of autism on employment. These four themes diverged into several subthemes, including seeking an autism diagnosis, reactions to being diagnosed, validating and managing symptoms, experiencing platonic and romantic relationships, and being victimized by bullying. 

Conclusions/Implications

The themes and subthemes suggested the online community served as a virtual space where women on the autism spectrum could share their common lived experiences to form a shared cultural identity, and establish attachment and a sense of belonging. 

Implications for social workers include being mindful that women on the autism spectrum may seek services for mental health concerns, such as depression or anxiety; that the nature of autism must be understood when selecting therapeutic approaches; and that online communities can offer non-threatening opportunities for adult females on the autism spectrum to authentically represent themselves, form social relationships, and connect with others.