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

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 n...

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Published inJournal of autism and developmental disorders Vol. 46; no. 10; pp. 3281 - 3294
Main Authors Bargiela, Sarah, Steward, Robyn, Mandy, William
Format Journal Article
LanguageEnglish
Published New York Springer US 01.10.2016
Springer
Springer Nature B.V
Subjects
Online AccessGet full text
ISSN0162-3257
1573-3432
DOI10.1007/s10803-016-2872-8

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Abstract 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.
AbstractList 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.
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.
Audience Academic
Author Mandy, William
Steward, Robyn
Bargiela, Sarah
Author_xml – sequence: 1
  givenname: Sarah
  surname: Bargiela
  fullname: Bargiela, Sarah
  organization: Research Department of Clinical, Educational and Health Psychology, UCL
– sequence: 2
  givenname: Robyn
  surname: Steward
  fullname: Steward, Robyn
  organization: Centre for Research in Autism and Education, UCL Institute of Child Health
– sequence: 3
  givenname: William
  surname: Mandy
  fullname: Mandy, William
  email: w.mandy@ucl.ac.uk
  organization: Research Department of Clinical, Educational and Health Psychology, UCL
BackLink http://eric.ed.gov/ERICWebPortal/detail?accno=EJ1115283$$DView record in ERIC
https://www.ncbi.nlm.nih.gov/pubmed/27457364$$D View this record in MEDLINE/PubMed
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Issue 10
Keywords Female autism phenotype
Autism spectrum conditions (ASC)
Diagnosis
Autism spectrum disorder (ASD)
Language English
License Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
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PublicationTitle Journal of autism and developmental disorders
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Snippet We used Framework Analysis to investigate the female autism phenotype and its impact upon the under-recognition of autism spectrum conditions (ASC) in girls...
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SubjectTerms 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
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Title The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype
URI https://link.springer.com/article/10.1007/s10803-016-2872-8
http://eric.ed.gov/ERICWebPortal/detail?accno=EJ1115283
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Volume 46
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