Bringing visibility to the needs of women and girls with autism

By Miren Hurtado
Feature article published in LINK magazine Nº 61 (Autism-Europe)
Images: Autism-Europe

For many years it has been widely understood that autism affects more males than females. A recent project, ‘Autism in Pink’, has called for further investigation into this topic.

Studies over many decades have shown that autism is around four times more frequent in males than in females[1].The Autism in Pink project worked on identifying and raising awareness of the unique symptoms, difficulties and needs of women and girls with autism, in order to improve knowledge among professionals and improve diagnostic practices and support services.

Diagnosis

The difficulties faced by girls and women with autism begin with getting a diagnosis of autism – or more accurately, not getting a diagnosis. Currently, between 1 in 100 and 1 in 150 people are being diagnosed with autism in Europe – totalling around 3.3 million people in the European Union[2]. Many experience difficulty getting a diagnosis, but for women in particular, autism is often overlooked or diagnosed late.

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The ways in which women and girls display symptoms of autism tend to be less obvious than for men and boys. For example, studies have shown that girls with autism tend to carefully imitate social behaviours of others more than boys, perhaps masking the symptoms of autism[3]. This can lead healthcare professionals to evaluate their difficulties in the context of other mental health issues instead, possibly leading to incorrect diagnoses.

Studies have shown that the average age of diagnosis in women is around 20 years of age – much older than for the male population[4]. As many girls on the spectrum do not receive an accurate diagnosis as early in life as boys, it is likely that they are underrepresented in the statistics.

Support

Another consequence of not receiving a diagnosis until later in life is not being referred to appropriate healthcare and education until later in life. It is widely acknowledged that early diagnosis and intervention can assist people with autism to develop skills to overcome many of their difficulties throughout their lives. It seems that many girls and women with autism are missing out on the assistance they need early in life.

When women with autism seek assistance later in life, they often encounter a lack of appropriate services; a problem faced by many adults with autism. In cases where women are fortunate enough to access services for adults, education and healthcare professionals are often not aware of the specific needs of women with autism. Ultimately, delayed and inadequate support leads women – even more than men – with autism to experience difficulties in fulfilling their own potential later in life.

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Employment

Between 76 and 90 per cent of adults with autism in Europe are unemployed[5]. The difficulties in communication and social interaction experienced by all adults with autism make job interviews and interactions with managers and colleagues very challenging. The lack of understanding of autism and lack of support from employers also creates many barriers to employment for adults with autism.

Women with autism who are employed not only face these difficulties, but also the discrimination faced by neurotypical women at work, including lower average pay levels and the ‘glass ceiling’ effect which favours men for promotions and higher level jobs. Therefore, women with autism are often unemployed or underpaid, under-supported and working in jobs that do not necessarily reflect their abilities[6].

The ‘Autism in Pink’ project

The ‘Autism in Pink’ project was conceived as a collaborative project among several Autism-Europe members to increase the visibility of girls and women with autism, and raise awareness of their specific needs.

The project’s outcomes included:

  • Training modules to highlight some of the obstacles faced by women with autism in their daily lives and to provide practical suggestions for solutions;

  • A study on the prevalence and symptoms of autism among women and girls, their specific needs, issues in relation to diagnosis and other mental disorders;
  • A documentary film, featuring the women with autism who took part in the project in each partner country;
  • An online book with a collection of personal writings and drawings by women with autism;
  • A qualitative research report about the lives of the women with autism who participated in the project.

 

An international event held in Lisbon in May 2014, presenting the project’s outcomes and featuring presentations, individual testimonies and discussion on the issues for women and girls with autism.

More information: www.autisminpink.net

Calling for action from

Members of the European Parliament

2014_11_05_Delegates from the ‘Autism in Pink’ project with the MEP Richard Howitt during the study visit at the European Parliament.

In March 2014, a group of women with autism, their families and delegates from the ‘Autism in Pink’ project participated in a study visit organised in partnership with Autism-Europe to raise their concerns with Members of the European Parliament in Brussels.

The participants called for specific actions, including:

  • Ensuring the review of the European Disability Strategy 2010-2020 that is expected to be conducted in 2016 addresses the gender dimension in disability and autism in particular;
  • Raising a question in the European Parliament on how the issue of under-diagnosis of autism in women and girls can be addressed (as a result, two parliamentary questions on women and autism were subsequently raised by MEPs);
  • Calling on MEPs to take action on the European Parliament resolution of December 11, 2013 on women with disabilities (2013/2065(INI)).

 

While in Brussels, the group of women also met with representatives from Autism-Europe, the European Disability Forum and the European Women’s Lobby to raise broad awareness of the concerns of girls and women with autism.

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[1] Kanner, 1943; Ehlers and Gillberg, 1993.
[2] Autism-Europe, 2010, Persons with Autism Spectrum Disorders: Identification, Understanding, Intervention.
[3] Atwood, 2007; Yaull-Smith, 2008; Gould & Ashton Smith, 2011.
[4] Gomez de la Cuesta & Mason, 2010.
[5] Aspiritech, AutismSpeaks, Specialisterne, The National Autistic Society (NAS) via the Association of Graduate Careers Advisory Services.
[6] Research from Autism in Pink project, 2014
Autism in Pink was developed with the financial support of the European Union’s Lifelong Learning Programme. Autism-Europe members, the National Autistic Society (United Kingdom), Autismo Burgos (Spain) and Federação Portuguesa de Autismo (Portugal), were partners in this project.
Images:
(first and second) Teresa and Celia at the day centre of Autismo Burgos, one of the partners in the project.
(above) Delegates from the ‘Autism in Pink’ project with the MEP Richard Howitt during the study visit at the European Parliament.
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