Experiences of Individuals with Autism Spectrum Disorder Who Identify As Lesbian, Gay, Bisexual, Transgender, Queer, Questioning, or Intersexed.

Background: While widely recognized as a serious omission, a lack of research focused on sexuality and ASD remains, and particularly the experiences of those who identify as LGBTQI. This results in minimal information available for individuals, family members, and professionals, and thus inadequate service provision for this population.

Objectives: The objective of this study was to gather preliminary data on the experiences of those who identify as LGBTQI and ASD, particularly the challenges they face stemming from these dual identities. We used a focus group qualitative analysis approach as a critical first step in exploring relatively uncharted ground, with the aim of identifying key themes and areas of need which might inform future research.

Methods: Four participants aged between 20 and 38 years with autism spectrum disorder (ASD) took part in the focus group. Participants’ gender identities included male, transgender; agender/nonbinary; agender; lesbian/queer. All participants were Caucasian. Participants provided proof of a DSM-IV ASD diagnosis. An initial pilot study utilized an online questionnaire to explore issues around the experiences of those who identify as ASD and LGBTQI. Responses (n=10) were used to inform the development of questions for the focus group. The focus group included eight questions and took around 90 minutes. Two coders independently coded the entire transcription using NVivo software and identified the key themes.

Results:

Four main themes emerged from the focus group including 1) the intersectionality between ASD and LGBTQI did not present problems for the group in terms of understanding their gender identity and sexual orientation. They saw these as two separate identities. They did not endorse the hypothesis that having ASD might hinder or impair their understanding of their gender identity. They did note that one of the biggest challenges was not having the vocabulary for how they identified. This may be in part due to sparse opportunities to explore gender and sexual identity; 2) Challenges stem from others accepting their dual identities. Others, including professionals and family members, may believe the individual is confused about their gender and sexual identities because they have ASD; 3) Lack of understanding of the autism spectrum presents numerous barriers and contributes to isolation, particularly from others in the LGBTQI community. Members of the LGBTQI community, as well as professionals, often have stereotypical views of ASD presentation, thus discrediting the individual and invalidating what they say. 4) Appropriate service provision is almost nonexistent with many professionals at a loss for how to support them. In certain cases participants were shuffled from one provider to another, delaying treatment for years.

Conclusions: While some positive aspects of identifying as LGBTQI and having an ASD diagnosis were mentioned, our participants mostly described obstacles. These preliminary findings identify some key target areas for future research and programming. There is a clear need for better support, understanding, theories and practices regarding the intersection between ASD and LGBTQI issues.