Understanding the Health Care Experiences of Girls and Women on the Autism Spectrum

Background:

Diagnosing autism spectrum disorder (ASD) in females may be challenging because their social behaviours present differently than males. Many girls and women are undiagnosed, misdiagnosed or diagnosed late in life. Their health care needs are often unrecognized, or unmet compared to males with ASD. Many experience mental health, self-identity, and gender-related challenges, and inadequate or insufficient health care and support. Systematic research that explores female experiences of ASD is lacking. Research that integrates a gender analysis, which involves identifying socio-cultural themes related to gender in data, can contribute to enhanced understandings of the health care experiences of autistic girls and women.

Objectives:

Our objective was to understand the ASD and health care experiences of girls and women. Research questions included:

1. How do girls and women experience autism and the process of being diagnosed with ASD?
2. How does being a girl or a woman with ASD affect access to health care?
3. What are girls’ and women’s experiences of both ASD-specific and general health care?

Methods:

A qualitative descriptive design (Kahlke, 2014) was adopted, which involved conducting individual and focus group interviews with three groups of participants: girls with ASD (12 to 18 years old), women with ASD (18 years and older), and parents/guardians. Our minimum target was 11 participants per category. A project advisory group of girls, women and parents provided ongoing recommendations about the methods and results. Thematic analysis methods proposed by Braun and Clarke (2006) were used to identify patterns in the data related to ASD, gender, and health care experiences. Interview transcripts were read and discussed by five research team members to develop a coding scheme by consensus. The interviewer’s post-interview memos were incorporated into the data set for analysis. A research assistant then coded the transcripts and memos using NVivo software to organize the data for the purpose of further analysis. Key themes were generated, reviewed and refined by the larger research team.

Results:

To date, 17 women and 6 parents have participated in the study. Recruitment of girls is in progress. Preliminary results indicate that there are specific presentations of ASD in females compared to males, and that gender-related factors contributed to females being undiagnosed and having unmet health care needs. Key themes included: 1) feeling different from others at an early age; 2) being diagnosed with mental health conditions and overlooked for ASD; 3) experiencing exhaustion from managing ASD in daily social life; 4) being socialized differently than boys and men; and, 5) lacking access to health, education, employment and social services and supports. Gender and ASD identities and expressions were entwined and influenced how girls and women experienced health care and social interactions.

Conclusions:

Understanding the health care experiences of girls and women with ASD can inform: 1) the development of diagnostic and health care practices that are tailored to their specific health care needs; 2) the training of health professionals; and, 3) pathways to improve access to both general health and ASD-specific services and supports.