By Grace Hodge

“But you don’t seem autistic!” It’s a common response, familiar to many women when disclosing that they are autistic to others. As an autistic woman myself, I sometimes respond to this question with exasperation, other times with a detailed monologue about the history and misconceptions of autism – and either way,  the person probably feels a bit victimised, touche!

Autistic women and girls often do not match societal expectations of and stereotypes about autistic people. We are often perceived as being too outgoing or too ‘normal’. Much of this misunderstanding and miseducation has amalgamated over the years as a result of autistic research and literature focusing far too heavily on androcentric samples, and on boys in particular. This follows research from 2011, [1] which suggested that autism is more common in boys than girls, despite this conclusion being based on predominantly male samples. Whilst this research has also negatively impacted many autistic men, as their diagnosis is often reliant on assessment during childhood, it has objectively had a far greater impact on autistic girls and women. This research has been the basis for diagnostic criteria which represent autistic traits and development in boys, but completely ignore or sideline common autistic female behaviours and characteristics. It is revealing that the average age for a boy to be diagnosed with autism is five, but the average age for a girl is eleven.[2] Even in this case, the research conducted to provide this statistic still used a male dominated sample, and so the age of diagnosis for girls and women is potentially even higher. There is a pressing need for more research to be conducted on autistic girls from a young age, in order to formulate accurate and effective diagnostic criteria and assessment.

“There is a pressing need for more research to be conducted on autistic girls from a young age”

To be sure, it has been consistently proven that autistic girls and women tend to show autistic traits differently to males. Whilst much of this disparity arises from their autistic traits going societally unrecognised, this is also because autistic females tend to ‘mask’ more than males do. ‘Masking’ is a term used to describe how autistic people hide or suppress their autistic traits. Autistic girls are shown to be very successful at imitating and copying mannerisms and personalities of socially-skilled people,[3] and this perpetuates that infuriating statement: ‘But you don’t seem autistic’. The prevalence of masking in females is thought to be a result of implicit gender roles enforced by society: Girls are expected to display higher rates of sensitivity than boys, and when they do not conform to these gender roles, girls receive more negative feedback than boys.[4] This social pressure and desire to fit in and assimilate with societal norms may therefore explain why girls are suggested to ‘mask’ more frequently than autistic boys. Masking becomes an effort not to be considered as ‘other’ or ‘different’.

Understanding or interpreting emotions and facial expressions and reacting appropriately is an ability autistic people often find difficult, and so the social expectation to mask can subsequently place increased levels of stress on autistic girls, whether they consciously realise it or not. Masking in itself is exhausting and draining. With this the case, if autistic girls mask for hours at a time – for example, in a school setting –  there is then a high prevalence of them breaking down at home, due to the constant struggle of pretending to be neurotypical. Thus, parents often recognise that their child needs help before educators, but receive little help from the school, as the behaviour of the child at school does not reflect their behaviour at home where they are not masking. 

“An earlier diagnosis would help autistic girls to find a sense of identity and self-understanding.”

Indeed, many girls are only diagnosed as autistic following mental health challenges, as being vulnerable in a therapy-based session often reveals signs of autism that have previously been dismissed or misunderstood. For example, many autistic girls are mistakenly believed to have schizophrenia, yet following discussion with a mental health practitioner, the schizophrenic ‘symptoms’ actually prove to be signs of chronic overstimulation. Thus, receiving an earlier diagnosis may mitigate the mental health challenges faced by autistic girls. A diagnosis would often help them to find a sense of identity and self-understanding.

Ultimately, not only do androcentric diagnostic categories create an incorrect societal representation of which traits imply autism, but imposed gender norms then also make it increasingly likely that autistic girls will receive a late diagnosis. Whilst a diagnosis will not change the fact that an individual has always been autistic, it can create increased clarity and result in improved mental health for autistic girls, helping them to receive the support they have always needed.

Some lesser-known autistic traits that are common in girls and women:

–   Oversharing

–   Stimming through jogging the knee or wringing their hands

–   Hyper-sensitivities (over-responsiveness) and/or hypo-sensitivities (under-responsiveness) to a range of stimuli.

–   Not conforming or struggling to understand fashion trends or social conventions. Autistic girls are more likely to dress ‘alternatively’ and subvert gender norms

–   Hypermobility

–   High pain tolerance

–   Highly organised and structured

–   A need for explicit instructions and difficulty understanding sarcasm or jokes

–   Intense special interests that change throughout development

–   Difficulties understanding facial expressions, inferring emotions or responding appropriately

–   Difficulties with balance, body awareness and coordination (many autistic people are also dyspraxic)

–   More monotone speech 

–    May be blunt with responses or brutally honest!

Most importantly, every autistic person is different. Autism is a spectrum, not a linear scale. Finding an effective diagnostic system may be an uphill battle, but I think it is one worth pursuing.

Feature image credits: Pinterest


[1] Kim, Y., Leventhal, B., Koh, Y., Fombonne, E., Laska, E., Lim, E., Cheon, K., Kim, S., Kim, Y., Lee, H., Song, D., & Grinker, R. (2011). Prevalence of Autism Spectrum Disorders in a Total Population Sample. AMERICAN JOURNAL OF PSYCHIATRY, 168(9), 904–912. https://doi.org/10.1176/appi.ajp.2011.10101532 

[2] Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: Findings from a survey of 770 families. Developmental Medicine & Child Neurology, 41(12), 834–839. Cambridge Core. https://doi.org/10.1017/S0012162299001656

[3] Attwood, T. (2006). The pattern of abilities and development of girls with Asperger’s syndrome. Asperger’s and Girls, 1–7.

[4] Davis, T., & Wilson, J. M. (2016). Gender Schema Theory. In The Wiley Blackwell Encyclopedia of Gender and Sexuality Studies (pp. 1–3). https://doi.org/10.1002/9781118663219.wbegss655


2 responses to “Autistic girls and the struggle for diagnosis”

  1. Rachel Hodge Avatar
    Rachel Hodge

    Well said Grace- I hope this will lead to greater understanding in the future and better research.

    Like

  2. K Howden Avatar
    K Howden

    Yes! Although I don’t believe I am Autistic, I am finding more and more that my behaviours align with ADHD which is also not commonly diagnosed until later in women. The more we talk about this the better!

    Like

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