Elucidating Female Autism Study (EmFASiS). Investigating Differences in Presentation, Diagnostic Process and Personal Experiences in Males and Females with Autism.

Poster Presentation
Saturday, May 12, 2018: 11:30 AM-1:30 PM
Hall Grote Zaal (de Doelen ICC Rotterdam)
S. Piening1, Y. Groen2, K. Greaves-Lord3, S. Castelein4,5, A. F. Stapert1, A. M. Euser1, D. Jansen1, L. Davids1,6 and I. D. van Balkom1,7, (1)Autism Team Northern Netherlands, Jonx (Lentis), Groningen, Netherlands, (2)Clinical and Developmental Neuropsycholog, University of Groningen, Groningen, Netherlands, (3)Erasmus MC, Rotterdam, Netherlands, (4)Lentis Research (Lentis), Groningen, Netherlands, (5)Experimental Psychotherapy and Psychopathology, Behavioural and social sciences, Rijksuniversiteit Groningen, Groningen, Netherlands, (6)Medical Psychology, Martini Hospital, Groningen, Netherlands, (7)Lentis Psychiatric Institute, Zuidlaren, Netherlands

Females are more often affected by Autism Spectrum Disorder (ASD) than previously assumed. Differences in ASD symptoms and complaints, and male-biased diagnostic instruments combined with better skills in masking ASD-symptoms by females may contribute to late recognition of symptoms. Females with late diagnosed autism often look back with sadness when considering how different their lives could have been had they received a timely diagnosis and appropriate care.


The EmFASiS project consists of several studies and this first study aims to facilitate earlier identification and diagnosis of ASD in females through better understanding of female autism phenotypes and differences with males. Improved understanding of autism in females will inform diagnostic and treatment processes and may prevent emergence of comorbid disorders, and unexplained physical symptoms. Issues which lead to lower quality of life, decreased participation in society, and higher societal costs.


The first study of the EmFASiS project consists of semi-structured interviews with 15 females and 15 males with autism. The semi structured interview will be developed in close cooperation with experienced service users and will include questions regarding experiences with their gender-roles (such as daughter/son, friend, partner, parent, caretaker, employee), current and past complaints and symptoms, as well as personal diagnostic process and treatment. Analyses will be performed using a qualitative data-analysis program.


The study will start in December 2017 and results of the qualitative study will be presented at the conference.


In addition to gaining insight into differences in presentation, diagnostic process and personal experiences in males and females with autism, we expect to identify influencing factors regarding diagnostic delay in females.