Challenges for Females with Autism: A Parental Perspective

Saturday, May 13, 2017: 12:00 PM-1:40 PM
Golden Gate Ballroom (Marriott Marquis Hotel)
M. Mademtzi1, K. Koenig1, F. Shic2, C. Foster1, S. Valencia1 and P. Singh3, (1)Yale Child Study Center, New Haven, CT, (2)Center for Child Health, Behavior and Development, Seattle Children's Research Institute, Seattle, WA, (3)Yale School of Public Health, Yale University, New Haven, CT
Background: An ASD diagnosis can be four times more common in males than in females (Fombone, 2011). However, it is suggested that there is a greater prevalence of autism amongst females than statistics report (Attwood, 2007). A wide range of hypotheses regarding the etiology of sex differences has been proposed, including genetics, brain function, and low validity of assessment tools in detecting autism in girls (Rivet&Matson, 2011b). For these reasons, studies investigating the experiences and needs of individuals with ASD have largely focused on males (Hellemans et al. 2007) and those studies that have included females have involved mixed-sex samples, preventing detailed exploration of female-specific issues (Nichols & Blakeley-Smith 2010). More recently it was shown that although some of the issues faced by females with ASD are similar to those of males with ASD, there seem to be some characteristics more unique to females’ experience and their families (Cridland et al., 2014). Hence, there is a largely unaddressed need to identify the specific needs of females with ASD.

Objectives: This study investigates parents’ perspectives on the challenges that their daughters with ASD face in different aspects of their lives.

Methods:  In total, 40 parents of 40 females with autism (age range=4-29 years) participated in the study. Five separate, 2-hours long focus groups were conducted, in which 7-10 participants engaged in semi-structured discussions. Field notes were analyzed using thematic analysis (Krueger&Casey, 2000) to identify data that related to predefined categories (challenges). Relevant data from all field notes were then read and re-read to identify patterns and subthemes within each predefined category. Through this iterative process, we were able to select the most relevant sub-themes while ensuring that all material could be sub-classified. Once the coding scheme had been established, the notes were subsequently double-coded by two researchers to ensure consistency of approach.

Results: The focus groups generated rich information and revealed several key challenges distinctly experienced by females with ASD. These were classified as themes relating to ‘social communication and social interactions’, ‘restricted, repetitive patterns of behavior, interests or activities and hypo-/hyper-sensitivity to stimuli’ and ‘life skills’. Some of these points were similar to those experienced by males with ASD, such as sensory sensitivities in relation to loud noises, challenges of learning personal boundaries in interactions with others, difficulties following the demands of hygiene routines and impact of receiving late diagnosis. However, other issues discussed were of particular relevance to girls with ASD, such as difficulties socializing with other girls (both with ASD and typically developing), sex-specific puberty issues, and perceptions of sexual vulnerability.

Conclusions: This study highlights an important research area and is a preliminary step towards understanding the experiences of females with ASD and their families. However, there is a need for further research investigating female autism presentation through direct examination of the females themselves (Lai et al., 2015). Taking this research direction provides a greater potential to contribute to the well-being of females with autism, build meaningful support services and also add to our general understanding of autism.