There are some important things to note in regards to girls and women on the spectrum. The information on this page has been provided by Dr Lori Ernsperger, PhD, BCBA-D, (pictured right) a US expert on Autism Spectrum Disorder in girls and women. We are very grateful to Dr Lori for sharing her expertise with us.
Dr Lori tells us:
Many parents of girls with autism spectrum disorders (ASD) report spending much of the early years on an emotional rollercoaster. On the one hand, they are excited and celebrate their daughter’s developmental milestones, yet, they become increasingly concerned and anxious over puzzling behaviours.
Parents are faced with barriers from medical doctors and psychologists to explain these sometimes severe and unusual behaviours. “I have been told by my own physician that ‘there is nothing wrong with your daughter’, and you start believing it is all in your own head” (Walker, 2012).
Obtaining an ASD diagnosis for a female can be very challenging with scant research and available answers from professionals.
Autism was first reported by Leo Kanner in 1943 and since that time there has been thousands of journal articles and wide-spread international attention. Yet, there is a paucity of scholarly research focused on females with ASD. Although there is some recent discussion regarding the exact ratio of males to females, the most widely reported male-to-female ratio for ASD is 4:1 (Halladay, 2014). Dr. Hans Asperger originally reported in his seminal research on a milder form of autism (1944) that:
In the autistic individual the male pattern is exaggerated to the extreme… It could be that autistic traits in the female only become evident after puberty. We just don’t know. (Frith, 1991, pg. 85).
Women with ASD are Under-diagnosed
Unfortunately this early statement by Dr Asperger has had an on-going impact on the assessment and diagnosis of females with ASD. Females have been greatly underrepresented and referred to as “research orphans” (Bazelon, 2007). The vast majority of research findings and treatment recommendations for individuals with ASD have focused on the male prototype, or male characteristics, of ASD leaving little empirical work identifying the needs of females. “The underdiagnosing of women with ASD contributes to the marginalization of females” (Kearns-Miller, 2003). It is time to focus international resources, policies, and research to provide scientifically sound and suitable guidance to families, and more importantly, for girls and women as they find their voice and navigate life’s journey.
The Male ASD Brain
The male characteristics of ASD often reflect general stereotypes from television or movies, such as Rain Man. According to Cambridge University Professor Simon Baron-Cohen, individuals with ASD are “Systemizers” with characteristics such as: classifying and organizing systems; interests in computers, construction, and mathematics; focus on structures and other technical systems.Systemizers is a term used to describe the male brain or male prototype of ASD (2003). Unfortunately these male focused characteristics are not inclusive of female traits.
A Female Profile
Females with ASD should not be expected to “fit” within the narrow guidelines of a male dominated diagnosis. Over the last decade, professionals are beginning to identify general characteristics of females with ASD. With anecdotal input from females and family members combined with experts in the field of ASD, there is a female profile emerging (Lai, Lombardo, Auyeung, Chakrabarti, & Baron-Cohen, 2014).
The general consensus is that females with ASD exhibit:
- Increased social imitation skills,
- A desire to interact directly with others,
- A tendency to be shy or passive,
- Better imagination,
- Better linguistic abilities developmentally, and
- Interests that focus on animals or people.
Explaining the Gender Disparity
Our understanding, that females with ASD will not exhibit the same behaviours or traits as males with ASD, has spurred new research as to the question of gender ratio disparities. Based on the current limited research, there are three preliminary findings to explain the gender disparity. It is important to note that each of these findings should not be considered in isolation as the sole factor responsible for the gender disparity, as there may be considerable overlap.
Bias in Diagnostic Tools and Protocols
The initial hypothesis to explain the ratio disparity between males and females with ASD is that diagnostic tools are not designed to adequately assess females. Diagnostic tools were designed based on the extreme male characteristics of ASD and reflect the early statements of Dr. Hans Asperger that this disorder is based on male traits. When a diagnostic tool has an overreliance on the male characteristics, such as the traits of Systemizers, females are unable to meet the threshold for an appropriate diagnosis.
Characteristics such as shyness and over-sensitivity, common to ASD, are sometimes deemed to be typical of female traits and not considered as part of the diagnosis (Gould, 2008). Therefore, physicians may not recognise certain female characteristics as part of the spectrum.
Questions Not Sensitive Enough
In addition to an over-reliance on male characteristics, the questions asked by a physician during a routine doctor’s visit are not sensitive enough to capture female traits. For example, physicians may ask questions regarding age-appropriate play skills: Does your child play pretend or make-believe? Parents of girls with ASD report that, “the questions don’t capture what is unusual or abnormal about our daughters and their habits” (Huerta, 2014). When asked this question, one mother reported:
Mattison played with dolls. Or so I thought but it looked like more work than fun. She lined up her dolls in a perfectly uniform row then covered their heads with a blanket. (Ernsperger & Wendel, 2006, pg. 20)
Young girls, like Mattison, may appear to display pretend play with toys, but upon further investigation this scenario is actually part of the restricted repetitive behaviours associated with ASD.
In order to address these concerns, some researchers are developing new screening and assessment tools specifically designed for females. The Girls Questionnaire for Autism Spectrum Disorders is currently being validated by Dr. Tony Attwood and colleagues (Attwood, Garnett, & Rynkiewicz, 2011-2103). New assessment tools may help to narrow the current gender discrepancies within ASD.
In addition to the potential bias of diagnostic tools, the assessment process or protocols are often inadequate in capturing the complete profile of a female, particularly for young girls. An annual brief visit to the doctor’s office does not provide a clinician with enough information to make a diagnosis. According to one mother,
“Unless you spent a day or two with my daughter, you wouldn’t know anything is wrong with her, except she is a little odd. If the doctor could observe her at a birthday party, it would be a different story.”
With an increase in social imitation skills and a desire to interact with others, a brief visit to the doctor will not distinguish the subtle traits of ASD in females.
Diagnostic Overshadowing – overlooking the characteristics of Autism
Another barrier for females seeking a diagnosis is the predetermination of a diagnosis based on gender referred to as “diagnostic overshadowing.” In a recent e-mail a woman wrote:
“Even the medical profession has not been particularly helpful in this area (seeking a diagnosis). For example, no matter how high my score was on the assessment I took a couple of years ago at the age of 50, my psychologist insisted that those characteristics were caused by childhood trauma, not Asperger’s.”
Like the experiences of so many women, this physician refused to provide a diagnosis of ASD even in the face of clinical data. Mis-diagnosing females with ASD is widely reported on social media sites and in women’s forums.
“When women walk through the door with the subtle characteristics of ASD, the doctor will shift to other disorders, (Happe, 2013). These disorders include personality disorders, mood disorders, depression, anxiety, OCD, or even eating disorders.
The initial concerns with diagnostic tests reveal useful information and guidance to enable those responsible for publishing assessment tools to insure that females with ASD are considered when developing objective measures free from gender bias. In addition, physicians require written guidelines for how to identify girls and women with ASD.
Socialisation of Females
The well-known 19th century poem, “sugar and spice and everything nice, that’s what little girls are made of” casts a narrow focus of how girls are expected to behave within our culture and society.
It is socially acceptable for girls to be quiet or introverted.
Girls are praised for showing empathy and kindness.
Unfortunately when we reward these passive behaviours, either explicitly or implicitly, females are more likely to disguise their underlying issues or deficits that often are taking a serious toll on their daily lives. According to an Australian mother of a ten-year-old with ASD,
“My daughter is particularly good at masking her symptoms at school and when out socially, being polite and giving eye contact.”
As this mother explains, her daughter has learned to camouflage her emotions based on the situation. Societal gender norms and narrow expectations for females permit them to fly under the radar. School personnel and other professionals working with youth require further training on the often subtle gender differences between males and females with ASD. It is important to question when a young girl is socially excluded or exhibiting behaviours which are impeding the social demands of the school environment.
Breaking the Genetic Code
The final theory posed to explain gender disparities suggests a link to genetics. Scientists have been exploring genetics for over a century and have recently mapped out the human genome. All humans have 22 pairs of chromosomes and two sex chromosomes. Males have a pair of XY chromosomes and females a pair of XX chromosomes.
A recent study examined 10,000 pairs of fraternal twins for their genetic levels of autistic traits (Robinson, Lichtenstein, Anckarsäter, Happé, & Ronald, 2013). The researchers found that, as a group, girls did not have ASD unless they came from families with high risk of genetic material, whereas boys from low-risk families were affected with the disorder. According to Dr. Ronald, “unless girls were loaded up to the gills with genetic risk factors, they did not have many of the autism symptoms.” It appears the XX pair of chromosome may provide an additional layer of protection. This breakthrough research may influence further genetic mapping of ASD and family risk factors as well as the possible development of genetic screening.
Looking to the Future
With this limited research, it is impossible to firmly conclude the reasons for gender disparities between males and females diagnosed with ASD. Ultimately, it is not enough to merely increase the rate of diagnosis. The crucial outcome is for every girl or woman with ASD to fully understand their disability and achieve, to the maximum extent possible, a quality of life.
The purpose of the diagnosis is to gain access to effective educational supports and community services so desperately needed to meet the unique challenges of females with ASD. The confirmation of a diagnosis can open the doors for parents of young girls with ASD and adult women to receive the necessary interventions to develop meaningful relationships, independence, and employment.
In the words of Ashley (Ernsperger, & Wendel, 2007, pg. 208),
“Some people may see ASD as a curse, but I view it as a gift. I would not trade it for the world.”
Attwood, Garnett, & Rynkiewicz (2011-2103). Girls Questionnaire for Autism Spectrum Disorders. (T. Attwood personal communication November 11, 2014.)
Baron-Cohen, S. (2003).The Essential Difference. New York, Basic Books.
Bazelon, E. (2007). What autistic girls are made of. New York Times. Retrieved from www.nytimes.com.
Ernsperger, L. & Wendel, D. (2007) Girls Under the Umbrella of ASD. Autism Asperger Publishing Company.
Frith, U. (Ed). (1991). Autism and Asperger Syndrome. London: Jessica Kingsley Publishers.
Gould, J. (2012). Missed Diagnosis or Misdiagnosis? Girls and Women with ASD. The NAS Lorna Wing Centre for Autism. Retrieved from www.autism.org.uk .
Halladay, A. (2014). Girls, Girls, Girls: A Recap of the Sex and Gender Differences in ASD Workshop. Retrieved from www.autismsciencefoundation.org.
Happe, F. in Lee, J. (2012). Diagnosis eludes many girls with autism. Retrieved from www.sfari.org.
Huerta, M. in Rudacille, D. (2011). Diagnostic tests for autism may miss many girls. Retrieved from www.sfari.org.
Lai, Lombardo, Auyeung, Chakrabarti, & Baron-Cohen, (2014). Sex/gender differences and autism: Setting the scene for future research. Journal of the American Academy of Child and Adolescent Psychiatry, doi:10.1016/j.jaac.2014.10.003.
Miller, J.K. (2003). Women from another planet: Our lives in the universe of autism. Bloomington, IN: A Dancing Mind Book.
Robinson, E., Lichtenstein, P., Anckarsäter, H., Happé, F., & Ronald, A. (2013). Examining and interpreting the female protective effect against autistic behavior. Proceedings of the National Academy, doi: 10.1073/pnas.1211070110.
Walker, A. (2012). Exploring the lived experience of parents caring for a daughter with ASD. North Straffordshire NHS. Retrieved from www.autism.org.uk.
About Dr Lori Ernsperger
Dr Lori is a teacher, author and US Board Certified Behaviour Analyst. She spoke at the 2014 Victorian Autism Conference and has been supportive of Amaze through a guest article in The Spectrum magazine. The information above has been published with her permission and we are grateful to her for being able to include it here.
‘The Female Autism Conundrum’
The Simons Foundation Autism Research Initiative (SFARI) carries out research on all aspects of Autism. They recently broadcast a webinar entitled ‘The Female Autism Conundrum’ with David Skuse and William Mandy talking about the evidence that supports the notion that the tools available for diagnosing girls with autism show an inherent gender bias. They also shared interviews with a former patient to provide specific examples of the ideas they discussed.
David Skuse is Professor of Behavioral and Brain Sciences at University College London, and William Mandy is his colleague and frequent collaborator, and senior lecturer of clinical psychology.
Skuse and Mandy are interested in exploring and refining the current conventional definitions of autism — specifically how it manifests itself in girls.