When I was studying for my PhD – between 2006 and 2010 – the ratio of male to female in autism was believed to be around 3 or 4:1. For Asperger syndrome (AS), the ratio increased to around 9:1. AS was by then accepted as being an aspect of presentation in autism and so these figures represented a statistical anomaly. Autistic women were certainly visible, as presenters, researchers and writers. In the UK were included Ros Blackburn, Dinah Murray, Genevieve Edmunds, Claire Sainsbury.
At that time, poor mental health outcomes had already been identified as a concern for the autistic population. It wasn’t well understood why so many developed anxiety and depression but then, very few people were asking the young people themselves, or the adults either. A feminist background and being the mother of two girls were motivators to focussing on girls, aiming to facilitate the girls’ authentic voices and make visible the reality of their lived experiences (Stewart 2011).
Much has changed in a short space of time, in some ways. There is greater awareness, at least within some circles, of autistic females. The NAS now runs regular conferences on women, and many women across the world including Carly Jones and Lana Grant (UK), Sarah Hendrickx (UK + Europe), Dena Gassner (USA), Barb Cook and Jeanette Purkis (Australia) work to raise awareness of autistic women and girls. But there is still a dearth of support, appropriate accommodations in school and workplace, trained services in health and social care.
It’s a challenge to have a voice as a representative of the autistic female experience. The report from the NAP, ‘The Autism Dividend’, mentions gender. It also identifies the profound transitional life experiences that are pregnancy, child-birth and early motherhood and gender-specific health care needs. This is still rare, acknowledgement of autistic women as having specific life experiences and needs. Those items within the report were hard worked for, not necessarily consciously resisted, but not recognised, initially, as priority issues.
Autistic females CAN be seen as school refusing, self-harming, high-risk behaviourist, suicidal, under-achieving teenage girls. They are relatively hard to see, perhaps, as college or university students, sometimes struggling to maintain their academic achievements within a context of overwhelming demands. They are next-to-invisible as vulnerable young women, vulnerable to exploitation and abuse. While boys are vulnerable to ending up in the criminal system, girls are as likely to be vulnerable but in other ways. They are mostly hidden as employees and almost entirely as mothers.
To talk about a ‘Future I’d like to see’ requires the existing context from which that future would have to be built. I don’t want to miss out the non-verbal, the learning disabled, the girls and women who have chronic illnesses or who have disabilities of other kinds, the menopausal, the elderly. I don’t want to exclude those who don’t identify as women or who don’t want to or can’t have children. I wouldn’t want ever to suggest that femaleness is only exemplified through motherhood. And that point segues quite well into the area of gender and the prevailing gender-biased perspectives in society, perspectives that as far as I can see are becoming increasingly narrow within the aggressively neoliberal agenda we are being pulled along with, making it harder for non-compliant, square-peg, think-outside-the-box individuals to find a route to self-identity and the building of self-esteem.
So this is probably a good place to start to think about the future: identity, self-esteem, agency, autonomy.
While autistic girls have been described as being difficult to identify because their interests often mirror those of their peers, but with greater intensity (Gould and Ashton-Smith 2011), gender stereotyping begins early in life and their environment is as important as their neurological ‘make-up’ at birth (Hines 2004). Autistic girls may identify gender-specific or ‘safe’ subjects to which they may turn their need to focus.
Girls – all girls – are under pressure to conform to societal expectations of femininity. For autistic girls, social expectations may have particular meaning in a context where girls are assumed and expected to be more socially motivated, more nuanced, with social inclusion and sexual attractiveness as their priorities. They don’t fit with their peers, no matter how hard they work,to glide like swans, while paddling desperately under the surface, to ‘masque’, or ‘pass’. Spectrum girls have been found to have elevated incidence of “tomboyism” (Baron-Cohen, S 2008), apparently. Adult spectrum women report being judged and criticised for being un-feminine (Flaherty 2002) or exhibiting ‘male’ traits. Many describe how their most comfortable platonic friendships throughout their lives have been with males.
I personally have witnessed the amused, patronising dismissal of a bright 14 year old’s ambitions to do well at STEM subjects with the aim of becoming an astrophysicist by the adults around her. Making and keeping friends was not her priority focus and why should it be if that’s not something, at 14, she’s good at, while physics is (or anything else, for that matter)?
Such gender-stereotyping and its detrimental impact relating to many areas of life, such as female entry to STEM subjects, lack of accommodation in academia, the workplace, patronage, discrimination, dismissal, is not restricted of course to females who are autistic. However, I would argue that for autistic females, it is amplified. Autistic females are a marginalised group within a marginalised population.
Prevailing narratives of autism, autism stereotyping and gender stereotyping intersect to make autistic girls and women not just ‘invisible’ within the community but in many ways often ‘invisible’ to themselves. Failure to build a sense of self, the loss of identity and self-esteem is the result of an insidious process of self-denial, an adaptation to a hostile environment, a survival strategy. Feelings of stigma, disrupted self-identity and poor self-esteem have profound consequences (Goffman, E 1963) described as internalised pain and disabling beliefs or ‘psycho – emotional disablement’ (Milton, D 2012).
From 1978 on Mary Baroness Warnock’s UK government commissioned report on special education needs was used to drive an agenda of mainstreaming in education. Almost 30 years later, in 2005, she published a review in which she said:
“For a child with Asperger’s, the transition from primary to secondary school may be traumatic, even catastrophic. Such a child may no longer even pretend to keep up, feeling defeated by the inevitable demands of the school environment: the bustle and clamour, the pushing and shoving, the rushing from one classroom to another, the need to top speed whatever the activity, the teachers who are different every hour of the day, and many of whom are in the school only temporarily. Some of these horrors can be mitigated to such children if they have a personal assistant, but it is unlikely that any school can provide the level of assistance they need, all day and every day. Moreover, excessive reliance on assistant can present its own problems, not least feelings of dependence and inferiority.
…I am convinced that for such children, and for those with ADHD and other problems, what is needed is a mixture of care and small class teaching in the environment of a small school. Without such an environment, education will be impossible: they will constantly be too anxious and miserable to learn. They may begin to refuse school; they may become self-destructive or suicidal; they may be induced to stay at school only by antidepressant drugs. For such children inclusion is a nightmare.”
It’s time to admit inclusion is NOT the same as mainstreaming and that mainstreaming can be toxic for young autistic people, including and in specific ways for young autistic girls. Inclusion is not about being treated ‘the same as’ but about community and being empowered to build the capacity to act as full citizens no matter what our abilities, our personalities or how we identify ourselves. It means being visible, for a start, for adjustments being made to underpin equity of treatment, opportunity, services, for the building of a truly inclusive culture that allows all young people to feel accepted, valued and confident.
So the future I’d like to see?
I’d like to see non-partisan long term co-operative thinking about how we best resource an educational strategy that admits one size cannot possibly fit all. I’d like to see schools building cultures of genuine inclusivity and where that means allowing ‘quirkiness’ to thrive, having the vision and flexibility to accommodate the needs of those who are ‘different’. (Humphrey et al 2008). I’d like to see a culture where autistic girls are safe from bullying, derision, condemnation, abuse. I’d like to see autistic girls – all girls – accessing assertiveness and life-skills training.
I’d like to see a future where it is understood that autistic people may have specific needs, but where those needs are identified and accommodated early on, the long term outlook for their ability to thrive and contribute is improved in ways that may be currently impossible to quantify but are clearly likely to be profound. I’d like to see a future where autistic girls, women, their families are visible, heard. I’d like to see a future where they can ask for help and are supported but not infantilised in the process (Snow 2013). There may be specialist provision needed at various points in a lifetime, but again, the benefits are potentially far reaching, specialist antenatal and maternity provision, for example, and empathic, sensitive support for new mothers. I’d like to see training and funding for autistic women in counselling and mentoring.
I’d like to see a society where autistic girls can follow their own interests and developmental trajectories, to the best of their personal abilities, where they have role models because females are visible, where identifying publicly as autistic for women is no longer a complex, difficult issue in a context where they are frightened of losing their jobs or, when mothers, of how their capacity to parent will be perceived. By building that visibility, we then also build a sense of identity and community and self-esteem.
Finally, I’d like to see a society where the stigma of autism is gone, where autism is understood as an aspect of the diversity of humanity where every being has value, just for being. And where it is understood that over half of that diversity is female.
For more ‘future-wishing’, Scottish Autism’s Right Click for Women and Girls was conceived and created with autistic input from the start. SWAN: Scottish Women’s Autism Network’s website has links to video recordings from our Learning Events.
Dr Catriona Stewart
Dr Catriona Stewart is a member of the National Autism Project’s Autism Advisory Panel and chairs SWAN (Scottish Women’s Autism Network) which offers peer-support and advice and is committed to increasing knowledge and understanding. Read more about her here.
References
- Baron-Cohen, S. (2016) Presentation to SARG conference, Edinburgh
- Faherty, C. (2002) Asperger’s Syndrome in Women: A Different Set of Challenges?
- Goffman, E 1963 Stigma: Notes on the Management of Spoiled Identity London: Penguin
- Gould, J, Ashton-Smith, J (2011) Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum Good Autism Practice (GAP), Volume 12, Number 1, May 2011, pp. 34-41(8)
- Hines, M (2004) Brain Gender UK: Oxford University Press
- Humphrey, N & Lewis, S 2008 Make Me Normal: the views and experiences of pupils on the autistic spectrum in mainstream secondary schools Autism 2008 12;23 4
- Milton, DEM 2012 On the ontological status of autism: the ‘double empathy problem’ Disability & Society Volume 27, 2012 – Issue 6
- Snow C (2013) Beyond Visions of Repair: Evoking a parlance of capacity and competence in research on Asperger Syndrome and Schooling in Emerging perspectives on disability studies ed: Wappett and Arndt Palsgrave MacMillan.
- Stewart, C (2011) Hermeneutic phenomenology: Experiences of girls with Asperger’s syndrome and anxiety and Western Herbal Medicine PhD Thesis Edinburgh: Edinburgh Napier University.
- Stewart, C (2012) Where can we be what we are? the experiences of girls with Asperger syndrome and their mothers Good Autism Practice 13,1,2012.