Autistic Female Research
Research Autism held the first conference in the UK to address the issue of women and girls with Autiism chaired by Lorna Wing
Research focusing specifically on adult females with ASD is especially limited, with much of the reference literature tending to be anecdotal or autobiographical in nature. There may be a special need to better understand the everyday life experiences of women at the ‘high functioning’ end of the autism spectrum, who appear to face particular challenges surrounding the recognition and validation of their ASD symptomatology(potentially) in their efforts to ‘mask’ their impairments. It is reasonable to assume that both these factors will impact on wellbeing and functioning in a wide range of life areas
Medicine has for a long time been a male orientated field with most research being conducted on males. Sex differences in many fields are now finally being recognised and the same is true with Autism.
For many years Autism has been a condition that was believed to affect mainly men. The belief that Autism was a male condition has dominated since the early research of Kanner and Asperger which was further endorsed by the extreme male brain theory published by Professor Simon Baron-Cohen.
“We’re trying to address the question: Are girls different? And how are they different?”
Scholars in other disciplines have run up against and resolved many of these same problems in relation to other health conditions, but in autism, the fact that boys and girls are different is treated as if it’s a startling new discovery.
It wouldn’t make much sense if the minds of men and women were identical. There are many anatomical, and physiological differences between men and women, so it’s not rocket science that male and female brains may work in slightly different ways, giving rise to sex differences in cognitive abilities, personality, emotions, and behaviour. All ‘neuro-typical’ boys and girls are very different in their social, communication and behaviour so it’s not hard to comprehend that girls with autism will be different to boys with autism.
Are girls really protected from “autism”? It has now been recognised that Autism is far more prevalent in women than previously thought but is still often untreated because the stereotype focuses on extreme male behaviour.
"However, the high male-to-female ratio in diagnosed autism is compatible with an alternative interpretation: There may be a distinct, female-typical presentation of autism that the current diagnostic criteria and diagnostic tests miss because those criteria were mainly derived from studying the condition in males. What’s more, the female autism phenotype may be especially difficult to detect in those with average intelligence and above."
Very little academic research has been published on the sex differences in Autism and there is little understanding of how girls and women are affected. Two studies published in the past year lend support to the notion that autism looks different in girls than it does in boys, making it harder to recognize and diagnose in girls. The studies reflect growing suspicion in the research community that the underlying biology and the experiences of girls with autism may both be distinct.
Autism experts are calling for changes in diagnostic testing, saying the current approach is failing to identify the true number of autistic females. They say a massive imbalance in the number of autism diagnoses between the sexes could be attributed to more subtle symptoms in females that are either dismissed by clinicians or undetected by current testing, which focuses on signs associated with male behaviour.
Everybody agrees that the autism field would benefit from more studies of girls, who have historically been ignored
“Understanding the sex difference is going to help everyone, boys and girls with autism,”
There are many first-person accounts written by Autistic females however these are often overlooked by the services and establishments that provide support.
Autism in Pink Project
As many as 5 million people in Europe may have autism. Many experience difficulty getting a diagnosis, but for women in particular autism is often overlooked or diagnosed late. For some time there has been a widely accepted belief that there are five times as many boys and men with ASDs than girls and women. However, recent research suggests that there are many more girls and women on the autism spectrum than previously thought.
Following a seminar focusing on the needs of Autistic females in 2009 chaired by Lorna Wing an EU grant was awarded to look at the lives of Autistic Women in four different countries across the EU
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Portugal
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UK
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Spain
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Lithuania
Each country had a group of twelve women Aim was to raise awareness of female needs and to develop some learning materials
The project looked at the quality of life using the Personal Well Being Index which focuses on nine separate areas, results showed that in all domains autistic women had a poorer overall quality of life, all reported high levels of personal stress and all of them reported having been bullied at school and work. All wanted to find happiness , manage their anxieties and feel safe and to feel productive
For any queries about the project, please email autisminpink@nas.org.uk.
The NAS Autism in Pink Project Documentary http://www.naspink2.webeden.co.uk/documentary/4584436842
Quote from the Adult Psychiatric Morbidity Survey
Rates were higher in men than women, as found in most research on autism (Brugha 2011a). However, it has been suggested that assessments for autism may draw more on how the condition manifests in men, and this may lead to under-identification of autism in women (Trubanova et al. 2014).
http://content.digital.nhs.uk/catalogue/PUB21748/apms-2014-autism.pdf
The Experiences and Needs of Female Adults With High-Functioning Autism Spectrum Disorder
Susanna Baldwin and Debra Costley
Abstract
There is limited large-scale research into the lived experiences of female adults who have an autism spectrum disorder with no co-occurring intellectual disability. Drawing on the findings of an Australia-wide survey, this report presents self-report data from n=82 women with a high-functioning autism spectrum disorder in the areas of health, education, employment, social and community activities. Where relevant, comparisons are provided with the male subset of the same study population; however, in the majority of analyses, no discernible gender differences emerged. The findings highlight the diverse and complex challenges faced by women with high-functioning autism spectrum disorder, including high levels of mental health disorder, unmet support needs in education settings and the workplace, and social exclusion and isolation.
Social Anxiety and Response to Touch: A Preliminary Exploration of Broader Autism Phenotype in Females Amanda K. Ludlow Hannah Roberts and Roberto Gutierrez
Abstract
Subclinical autism-related traits have been shown in the general population to be independently related to both social anxiety and sensory sensitivity. The present study examined the relationship between autistic traits as measured by the Autism Quotient (AQ) and its relationship to social anxiety and tactile sensation abnormalities. One hundred and seventy-three female university students completed the AQ, the Liebowitz Social Anxiety Scale (LSAS), and the touch subscale of the Adult/Adolescent Sensory Profile. Results revealed that the relationship between social anxiety and tactile sensation abnormalities to be fully mediated by the level of autistic traits. Of the two subscales forming the LSAS (anxiety and avoidance), the avoidance score related more strongly to tactile sensation abnormalities and was again found to be moderated by the AQ.