The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype

• Published in: Journal of autism and developmental disorders Vol. 46; no. 10; pp. 3281 - 3294
• Main Authors: Bargiela, Sarah, Steward, Robyn, Mandy, William
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.10.2016; Springer; Springer Nature B.V
• Subjects: Abuse; Acknowledgment; Adolescent girls; Adolescents; Adult; Adults; Autism; Autism Spectrum Disorder - diagnosis; Autism Spectrum Disorder - psychology; Autism Spectrum Disorders; Autistic children; Behavioral Science and Psychology; Child and School Psychology; Child Health; Child psychology; Children & youth; Clinical Diagnosis; Delayed Diagnosis - psychology; Demographic aspects; Diagnosis; Early Intervention; Female; Females; Femininity; Gender differences; Gender Issues; Genetic aspects; Genetic Disorders; Genetics; Genotype & phenotype; Girls; Health aspects; Humans; Identification; Identification and classification; Investigations; Late Adolescents; Male; Males; Neurosciences; Original Paper; Pediatrics; Pervasive Developmental Disorders; Phenomenology; Phenotype; Phenotypes; Psychology; Public Health; Qualitative research; Quality of life; Risk assessment; Semi Structured Interviews; Sex Factors; Sexual Abuse; Sexual identity; Surveys and Questionnaires; Systematic review; Teachers; Undiagnosed; Well being; Women; Women's health; Young Adult; United Kingdom > UK; Female autism phenotype; Autism spectrum conditions (ASC); Diagnosis; Autism spectrum disorder (ASD)
• ISSN: 0162-3257; 1573-3432
• DOI: 10.1007/s10803-016-2872-8

We used Framework Analysis to investigate the female autism phenotype and its impact upon the under-recognition of autism spectrum conditions (ASC) in girls and women. Fourteen women with ASC (aged 22–30 years) diagnosed in late adolescence or adulthood gave in-depth accounts of: ‘pretending to be normal’; of how their gender led various professionals to miss their ASC; and of conflicts between ASC and a traditional feminine identity. Experiences of sexual abuse were widespread in this sample, partially reflecting specific vulnerabilities from being a female with undiagnosed ASC. Training would improve teachers’ and clinicians’ recognition of ASC in females, so that timely identification can mitigate risks and promote wellbeing of girls and women on the autism spectrum.