Musings on the Making and Unmaking of Invisibility: Celebrating Autism, Women and Girls on World Autism Awareness Week

Dr Sharon Elley (1,431 words)

This month celebrates ‘World Autism Awareness (Acceptance) Week’ (March 26th to April 2nd, 2018). March ushered in International Women’s Day (8th March) where thousands of women worldwide marched on the streets to protest for women’s rights, equality and justice. It is timely and rightly so that the United Nation 2018 ‘World Autism Awareness Day’ focuses on empowering women and girls with autism and including them and their representative organisations in decision and policy making to address everyday challenges.

In response, I am raising awareness and seeking to increase academic and public understanding about the challenges autistic women and girls face in the context of gender, education and employment. Autistic women and girls experiences are still very much misunderstood. This includes complex, multiple and intersecting forms of inequality, disadvantage and stigma. It is equally important to also recognise autistic women’s and girls’ uniqueness, achievements and make visible pressing urgent and neglected social and economic issues. As Stella Young says: “Disability doesn’t make you exceptional, but questioning what you think you know about it does.”

Understanding Autism

Autism is an ‘invisible’ disability that has been historically associated with boys and men. It is defined as a life-long developmental condition that ‘typically’ manifests early in childhood (3 yrs+) and can lead to learning, social and communication difficulties like repetitive, restrictive or obsessive behaviours and unsociability. Much is still unknown about autism and its causes including its different manifestations and varieties of type and severity. This is aptly captured by Dr. Stephen Shore: “If you’ve met one person with autism, you’ve met one person with autism”. Sometimes described as a ‘variation’ in thinking, autistic people often view and experience the world differently without this being considered ‘right’ or ‘wrong’ or ‘abnormal.’

The term ‘spectrum ‘disorder’’ is problematically highlighted by some scholars in the idea of autism-as-disorder or autism-as-difference and classifies autism along with other neurodevelopmental differences such as Aspergers Syndrome. It is intended to reflect the broad experiences and challenges autistic people face from multiple areas in daily life to singular difficulties ranging in severity and type.  These are also captured in so-called differences between ‘low’ and ‘high’ functioning autism in problematic attempts to denote the severity of impact and challenges experienced. Using ‘functioning’ labels, however, oversimplifies those on the spectrum, whereas notions of ‘high’ glosses over the everyday challenges faced and, in general, autism does not fit into neat categories with many people believed to be ‘somewhere in the middle.’

Recorded evidence suggests that 1 in 100 people are diagnosed as autistic in the UK with figures annually rising. There is some debate about whether increased diagnosis is attributable to a broadened definition of the spectrum, increased methods of diagnosis, increasing rates of onset of autism itself or how women and girls with autism are becoming increasingly visible. Studies suggest, for example, one woman for every nine men is diagnosed with so-called “high-functioning” autism, that is, autism without intellectual disability. In comparison one woman for every four men is diagnosed with the more readily identified “low-functioning” autism. This suggests that women and girls may need additional problems to push them over the diagnostic threshold or to seek a diagnosis. Currently, it is very likely many autistic women and girls are left undiagnosed.

Traditionally, the link between autism and women and girls has been generally unrecognised in society, research and practice until relatively quite recently. Statistical data on gender prevalence ranges from 1:4 are female to 1:16 to the more recently suspected 1:2 with greater gender disparity between those who are considered ‘high-functioning’. Much research on autism is written by men or non-autistic women albeit this has put autism on the map and provided outstanding contributions to the field (e.g. Tony Attwood). Of these female exceptions, the work of leading academic and public figures such as Temple Grandin has gained public and media attention worldwide.  Although, it is also worth noting that women historical figures such as Jane Austin and Emily Dickinson are believed to have been autistic but this largely remains invisible in relation to the notoriety of Einstein and Newton being speculated as autistic.

(In)Visible and (Un) Equal

Despite diagnostic advances, women and girls often remain un-diagnosed, under-diagnosed or misdiagnosed (Gould, 2011). In part, research and literature to date has predominantly focused on the clinical representations and manifestations of autistic men and boys, and their experiences of autism with the impact of gender and intersecting inequalities less well understood.

Of what is documented, girls and women are often diagnosed much later and increasingly in adulthood with one autistic academic receiving her pension in the same week as her autism diagnosis. The signs are less visible in women as they are often better able to camouflage, mimic and copy socially acceptable behaviours, and internalise typical outward signs. Diagnostic criteria is also criticised for producing a ‘male phenotype’ of autism traits – although increasingly it is being acknowledged that men and boys too mimic but not to the same degree or level of skill as women. This can be at great cost to individuals resulting in a range of emotional, social, occupational and economic difficulties.

Autistic girls are less likely, for example, to complete primary school and more likely to be marginalised or denied access to education. White, wealthy and educated families are more likely to seek and secure diagnoses, afford interventions and access support with undiagnosed ‘autistic trait-like’ displays in childhood often demonised as ‘bad working-class parents and their children’. In 2007, a study also found that African-American children were 5.1 times more likely to be misdiagnosed with conduct disorders rather than autism or similarly labelled as delinquent. Autistic women are more likely to experience lower rates of employment and higher rates of underemployment. Generally in the UK, only 16% of adults with autism are in full-time employment compared with 31% for all disabled people and 57% for non-disabled people of working age. Poorer socioeconomic and health outcomes, for instance lower levels of promotion and higher levels of anxiety can contribute to workplace exhaustion and depression (NAS, 2016). Lifetime opportunities and outcomes are, therefore, impacted by multiple inequalities, stigma and stereotypical misunderstandings of autism. Compounded by a lack of understanding and support of autistic uniqueness and diversity, women and girls abilities often go unrecognised.

Worldwide, autistic men, women and girls uniqueness often remains invisible to the naked eye or is misconstrued in everyday thought, practice and policy. Autistic people experience what is sometimes named ‘ableism’ – that is, discrimination and prejudicial assumptions about their lack, deficit and inability compared to non-autistic and able-bodied people against whom they are ‘measured’. Being ‘ableist’ can be unintentional with people unaware how their words or actions devalue autistic people and their traits. As captured by Paul Collins: “Think of it: a disability is usually defined in terms of what is missing. … But autism … is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique”. Visibly embracing and celebrating what’s positive about autism means rethinking the terms associated with a deficit model.

In a recent widely circulated  info-graphic, Harriet Cannon (2018), University of Leeds, rearticulates students autistic  ‘traits’ from a deficit model to a more positive conveyance of workplace strengths. This means rethinking and making visible autistic people’s skills and values, irrespective of gender, and challenging lay perceptions which often only reside in negative connotations. Behaviours and characteristics associated with autism, like being ‘obsessive’ can be rethought to recognise how autistic people can focus and not be easily distracted, developing valued specialist skills in the process. ‘Restricted and repetitive’ behaviour and ‘rigidity’ also manifests itself in reliability, thoroughness and accuracy. Notions of ‘vulnerability’ often develop into the tenacity, resourcefulness and dogged determination valued in workplaces to overcome challenges. The ‘challenging’ and ‘blunt’ behaviour and speech associated with autistic people can also be reinterpreted as honesty, integrity and loyalty. Being ‘unconventional’ and ‘different’ also leads to creative, imaginative and expressive ideas and solutions via out-of the box thinking. Indeed, being autistic often means doing the fixing and mending the broken and not just being it.

To end, autism is not necessarily ‘merely a different way of thinking’ (Evans, 2017) and it has very real implications for everyday life from the mundane and ordinary to the extraordinary. This article does not profess to speak for, or capture the complexities of autistic people, their lives and communities but make visible some of the challenges and strengths, including the importance of celebrating difference and diversity. The misunderstanding, inequalities and invisibility that autistic people, particularly women and girls, experience will be explored throughout ‘Autism Week’ 2018. For now, rethink, rejoice and remember: we are all unique, different and exceptional.