Defining the Characteristics and Needs of Females with ASD: An Inductive Approach

Saturday, May 14, 2016: 11:30 AM-1:30 PM
Hall A (Baltimore Convention Center)
S. N. Bargiela1, R. L. Steward2 and W. Mandy3, (1)UCL, London, United Kingdom, (2)Robyn Steward, Suffolk, England, United Kingdom of Great Britain and Northern Ireland, (3)University College London, London, United Kingdom
Background: Females are at substantially elevated risk of their autistic symptoms being unrecognised: their difficulties are commonly mislabelled, or missed entirely. In non-referred samples there are approximately two or three males for each female with autism spectrum disorder (ASD); whereas in clinically-ascertained samples the male-to-female ratio is at least four-to-one. This shows that many females with ASD never receive a clinical diagnosis, and the help that comes with it. Even when females with ASD are identified, they receive their diagnosis (and associated support) later than equivalent males. Females require more severe autistic traits compared to males to come to clinical attention, and teachers underreport autistic traits in their female pupils. This gender bias has serious consequences for the health and well-being of girls and women with ASD, and has been identified by the autism community as a key problem to be addressed by research.

Females with autistic difficulties are at high risk of going unnoticed and unhelped because there is a female autistic phenotype - a female-specific manifestation of autistic strengths and difficulties that does not fit the current, male-based consensus. To overturn current discrimination against girls and women with autistic difficulties, clinical scientists must provide a valid, empirically-based description of the female autistic phenotype; and the ways it impacts on likelihood of receiving a diagnosis.

Objectives: To study, in depth, the experiences and characteristics of females with ASD who had not received their diagnosis in childhood, in order to: (1) generate hypotheses about the female ASD phenotype and (2) to understand how the female phenotype impacts upon under-diagnosis of females’ ASD.

Methods: Fourteen women aged between 18 and 30, with a clinical diagnosis of ASD in received in adolescence or adulthood, were recruited via snowball sampling and participated in a semi-structured interview. The data were subjected to intensive framework analysis.

Results: Framework analysis of the data yielded the following four themes specific to being a woman with ASD: (1) ‘You’re not autistic’, which centred on experiences of having autistic difficulties missed by professionals who considered ASD to be a male condition, and included consideration of the costs of a late diagnosis; (2) ‘Pretending to be normal’ focusing on efforts made by females to camouflage their autistic characteristics; (3) ‘Forging an identity as a woman’, which concerned perceived conflicts between having an autistic and a feminine identity, and how this was resolved; (4) Passive to assertive described experiences women had of being victimised, and how some had grown more confident and less vulnerable as they embraced the positive aspects of their ASD. 

Conclusions: The research highlights camouflaging of autistic characteristics as a key process for women with ASD, suggesting that it brings both advantages (e.g. better social function, higher employability) and disadvantages (e.g. missed diagnosis, pretending to be someone else). Also, further attention should be paid to the vulnerability to exploitation, including sexual abuse, reported by a substantial proportion of the sample; and to improving the knowledge of healthcare professionals about ASD in girls and women.