Editor’s Note: On 11 March, David Skuse and William Mandy presented evidence to support the notion that the tools available for diagnosing girls with autism show an inherent gender bias with Sfari.org. Skuse is professor of behavioral and brain sciences at University College London, and Mandy, his colleague and frequent collaborator, is senior lecturer of clinical psychology.
The complete replay of the one hour webinar is available here on their website or you can read Tania Marshall’s excellent summary below.
Autism Daily Newscast would like to thank Tania Marshall for taking the time to summarize the webinar for our readers and to Sfari.org (and the presenters) for allowing us to share it with you.
By Tania. A Marshall, M.Sc. (App. Psych), ASsoc. MAPS
Thank you to Sfari.org and female Autism researcher and experts David Skuse and Will Mandy for presenting a fascinating webinar discussing the gender bias.
Part One by Dr. David Skuse
More individuals who are termed “high functioning” are now being assessed and diagnosed. If Autism is defined by the male stereotype, then females are going to be missed and disadvantaged. We, and other professionals working in this area, believe a serious gender bias exists. So, where is the evidence that we are missing females?
- Studies are not recruiting a representative sample of females with Autism and therefore are making spurious conclusions.
- The under identification of females with Autism Spectrum Condition (ASC) with average IQ
- A South Korea Study screened approximately 55,000 school age children and found that the overall prevalence rate was 2.5:1 for male to female.
- A National Health Statistics Report (2013) found that changes in the prevalence of parent reported Autism Spectrum in school-aged children found that there was an 80% increase in the identification of school-age boys with ASC in the 5 year period as opposed to only a 43% increase in identification of school-age girls.
- By 2013, approximately 1 in 30 boys in the United States of America had been given a diagnosis of Autism Spectrum Conditions and ONLY 1 in 140 girls had been given a diagnosis of Autism Spectrum Conditions and this is most likely an underestimate. School-ages children (mostly boys) were largely responsible for this increased prevalence. Largest increase is between 14 and 17 years
3. Identifying, ascertaining and assessing teenage females with Autism Spectrum Conditions if particularly challenging and problematic. Why is this?
4. Compensation: Females from preschool onwards are much more aware to social behaviours and norms Girls are less able to identify due to their superficial social skills, fewer social communication issues, less stereotyped behaviours and/or unusual motor behaviours
5. Co-existing Conditions: The majority of females internalize their problems with depression, eating disorder, depression and a lack of “conduct” or behaviour problems and less ADHD in school, but behaviours are often seen at home. Boys are often picked up earlier due to their disruptive behaviours at school.
6. Biased recording of behaviours, symptom profiling, using standard instruments and tools. Autism has been defined as a male stereotype. Girls have less repetitive and stereotyped behaviours and less motor behaviours.
- If Autism is defined by the male autism stereotype, we will not find the girls. The definition of Autism is based upon the male stereotype and there is biased identification
Examples from the Interests and Behaviors section of the ADI-R
- Is she unusually interested in things like metal objects, lights, street signs, or toilets? No, she is obsessed with Justin Bieber!
- Does she play with the whole toy or seem more interested in part of the toy (e.g., spinning the wheels of a car or opening and shutting the door? No, sheis obsessed with her doll’s hair
- Does she have anything to which she is particularly attached, such as a pieve of pipe, a clothes peg or a stone? No, but she does have a collection of 2000 soft toys which are all pink, makeup collections, stationary items (my observations are erasers, pens, pencils, journals)
A population survey of gender differences in Autism traits which was a whole population epidemiological survey of autistic traits called the Avon Longitudinal Study of Parents and Children (ALSPAC), Bristol, UK. All participants were screened with the Social Communication Disorders Checklist (SCDC). Results showed that there were not dramatic differences by gender in parent’s answers on the questions. The results showed a 1.9:1 ratio for boys to girls.
Can females with high verbal IQ compensate for their ASC traits? Yes, females may compensate to some degree.
Females are at high risks of developing co-existing psychiatric disorders in response to social adjustment difficulties in later life.
In secondary school, females often become alienated, depressed and/or suicidal. They may become obsessed with people (to the point of stalking) or self-harm. Obsessions with people are common and can be towards professionals (doctors, psychologists, a best friend) with use of the Internet used to stalk the professionals, their families or their webpages.
The definition of ASC is based on the “male” stereotype. Current diagnostic criteria and the way it is implemented in research and clinics and assessment tools are biased against females and a large proportion of girls are missed in assessment or not included in the research.
We need to develop a better understanding of the ASC female phenotype which is founded on empirical and scientific information.
Ascertaining and assessment of girls with and ASC in the teenage years if particularly problematic.