Europe’s Autism Framework – Pitfalls and Recommendations

With women “more likely than men to present ‘invisible’ illnesses and disabilities” and susceptible to barriers to accessing health services (EIGE, 2017), gendered health disparities remain a global problem. Through observing the case of autism – a neurological disability that impacts the way that individuals perceive the world (Halladay, 2015) – women are proven to experience distinct challenges. Representing a persuasive approach, feminist disability theory advocates the adoption of an intersectional perspective – not only to elevate autistic individuals but to overcome societal stigma (Bumiller, 2008). Utilising this theoretical framework, this piece argues that Europe’s autism policy is currently inadequate. By firstly outlining autism as a case of gendered health inequality, secondly highlighting the contributions of feminist disability theory, and finally examining existing autism policy, this will propose recommendations to improve Europe’s response. Through this, disability policy is highlighted to have contributed to the further entrenchment of ableist and sexist stereotypes, necessitating a drive for greater intersectionality in the future.

The Case of Autism

Autism – a neurological divergence that causes individuals to process information differently (Bejerot and Eriksson, 2014) – is estimated to affect around one percent of the population and over five million people within Europe (Autism-Europe, 2016). Yet, while the prevalence of autism has increased in recent years, reflecting greater awareness (Roleska et al., 2018), autistic women continue to face significant barriers that impact their quality of life. 

With the diagnosis of autism skewed towards men at a ratio of 4:1 (Halladay et al., 2015), a masculine understanding of the disability remains. Partly resulting from gendered socialisation – processes by which women are taught to comply with feminine expectations of empathy, domesticity, and passivity – autistic women are driven to “adopt more intrapersonal processes” (Lai et al., 2014, pp.14). As women then tend to exhibit less repetitive behaviours, present higher social skills, and mask symptoms (Halladay et al., 2015), many fail to fit the dominant autistic stereotype. Due to this, autistic women are often diagnosed with co-occurring conditions such as anxiety, obsessive-compulsive disorder, or depression (Lai et al., 2014), meaning support remains unsuited to multiple challenges faced. As autistic women face challenges not accounted for, current research and support for autism is therefore ineffective, necessitating further investigation.

The Contributions of Feminist Disability Theory

Disputing the assumption that disablement is an innate detriment, feminist disability scholarship disrupts abled bodies as the norm (Bumiller, 2008). Presenting disability – alongside gender, race, and sexuality – as a social construction, highlights the need to alter existing hierarchies. Advocating intersectional activism, seeks to elevate the burdens accrued to multiply oppressed people, resulting in the alignment of feminist and disability movements – as both branches aim to reclaim slurs, refuse to downplay difference, and oppose able-bodied patriarchy as the norm (de Hooge, 2019). 

The practice of feminist disability theory represents a way to improve the lives of autistic individuals. Firstly, by denouncing essentialist conceptualisations such as the ‘male brain theory’ – which reinforces the notion that autism is a “difference that transcends language, culture, and social organisation”, primarily rooted in biological maleness (Bumiller, 2008, pp.973) – it challenges both the minimisation of women’s experiences and the treatment of disablement as innate. Secondly, by critiquing power imbalances within diagnosis – as authority lies with medical professionals, despite many possessing biased awareness of the condition (Bumiller, 2008) – the hegemony of non-disabled individuals is revealed. Thirdly, by exposing negative constructions of autism to justify stigma and forceful treatment (de Hooge, 2019), disability is shown to be an ongoing construction. Finally, by opposing normalisation – which “prescribes acceptable behaviour… [and trains individuals] to follow the standards of nondisabled communities” (Bumiller, 2008, pp.976) – the pressure of gendered and abled performativity is highlighted. Through this, feminist disability theory offers a robust and effective theoretical framework to critique European policy.

European Autism Policy 

In the last twenty years, the attention directed towards autism in the discussion of disability within Europe has increased, although not in the way required. With variation at both the regional and domestic levels, Europe has failed to reach a consensus, leading to inadequacies.

At the regional level, the European Union (EU) Charter for Persons with Autism was the first Europe-wide discussion of autism, asserting the rights of autistic individuals in 1996 (Autism-Europe, 2015). Following this, the United Nations Convention on the Rights of Persons with Disabilities further promoted the acceptance of the rights of disabled individuals, however, while setting a precedent for inclusion, its focus on guaranteeing that autistic people “achieve their full potential in society” perpetuates hierarchies and normalisation (van Kessel et al., 2020b, pp.2). Similarly, while the EU Written Declaration on Autism places a focus on providing accurate and early diagnosis, this was to facilitate “intervention [to] help overcome the symptoms of autism” (Autism-Europe, 2015, pp.2), showing a desire to limit autism. Arguably intended to disrupt this trend, the EU’s most recent disability policy framework – the EU Strategy for the Rights of Persons with Disabilities 2021-2030 (European Commission, 2021) – has considered the diversity of disabilities and needs to address gendered, racial, and age-related differences. This highlights that there are limited foundations for an intersectional approach, although attention to this has improved over time.

At the domestic level, few nations have effectively created a rounded response. Within twelve nations – Austria, Cyprus, Czechia, France, Hungary, Luxembourg, Malta, Poland, Slovakia, Slovenia, Spain, and the United Kingdom (UK) – all have centred autism policies around education, ignoring other aspects of life such as the workplace, relationships, and parenthood. Furthermore, there is a lack of consensus on the most beneficial education system – with one nation strengthening segregation between mainstream and ‘special schools’, six developing inclusive education, and five implementing hybrid systems (van Kessel et al., 2020a; 2020b: Roleska et al., 2018). This highlights that nations retain varied attitudes towards the place of autism within society, limiting the opportunity for regional acceptance. The scope also remains narrow, as education policy exclusively discusses lower forms of education, omitting discussion of adulthood. Nonetheless, there are positive takeaways from certain nations, as the UK has set a precedent for wide-ranging autism policies, Hungary offers unique teacher training opportunities to aid inclusive education and early diagnosis, and Malta has raised the necessity of supporting empowerment (van Kessel et al., 2020a; 2020b: Roleska et al., 2018) – highlighting points from which to build a united, intersectional regional strategy.

Recommendations

There are several areas in which Europe’s autism strategy could benefit from improvement.

Accurate and early diagnosis remains central to the betterment of autistic people’s lives, yet Europe’s fragmented and masculine understanding of the disability has stunted this. Building from the actions of Hungary and Malta offers a strong option as teacher training – if implemented effectively to remove gender biases – would expand knowledge of the disability and enable more individuals to be diagnosed earlier in life (van Kessel et al., 2020a; 2020b). This could also limit the burden of misunderstanding and masking that many autistic women face. By increasing the knowledge of teachers, could disperse diagnostic power, facilitating the increased voice of autistic individuals from childhood. 

Policy beyond education is also necessary, as this minimises difficulties that autistic women face. As women tend to be diagnosed later in life and struggle with the workplace and higher education (Halladay et al., 2015), the focus on early education is potentially unhelpful to many. Furthermore, due to the diversity of education systems implemented, the division could also widen within Europe. The recognition of autism within education would only benefit all if gender-specific differences are taken into account – a detail omitted from all policies examined. Instead, autism policy should follow the lead of UK nations as, while education remains a key focus, specific policies have been introduced to provide support to autistic people in adulthood through vocational training and workplace support (Roleska et al., 2018).

Crucially, the tendency towards normalisation must be prevented, as current policies seem content to assimilate autistic people into the norms of society. By seeking to push autistic individuals to overcome the symptoms of autism, rather than the barriers and stigma of ableism and sexism, disability continues to be presented as a state of being that must be reduced. The focus of European autism policy should instead centre around challenging negative perceptions and adapting society to fit the needs of autistic individuals – especially those that face multiple sources of discrimination.

Conclusion

Currently, Europe’s autism framework is largely unfit to tackle the challenges faced by autistic women. As autism and disability are treated as an innate state of detriment, policies can often be considered essentialist – enabling the perpetuation of negative stereotypes. Similarly, by failing to acknowledge or challenge power hierarchies, Europe has failed to effectively disrupt ableism within societies – seeming content to retain the isolation and stigma faced by autistic individuals throughout their lives. Through the promotion of the goal to align autistic people’s experiences with societal norms – specifically those associated with able-bodied patriarchy – their acceptance and empowerment cannot be achieved. Together, this has displayed the need to significantly adapt Europe’s autism strategy, building on the strengths of certain domestic policies and regional strategies to do so.

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