[Brussels, Article by Autism-Europe, 28 March 2014] In the lead-up to World Autism Awareness Day on April 2, a group of women with autism from across Europe came to the European Parliament to explain the challenges they face to their representatives.”We are invisible.” That’s how Maria, a young woman from Spain who has autism, sums-up the situation of women with autism in Europe.
Maria is one of a group of women who came to Brussels on March 19 to talk with their representatives in the European Parliament about what it’s like to be a woman with autism.
The difficulties they face begin with getting a diagnosis of autism – or more accurately, not getting a diagnosis. Women and girls are less likely to be diagnosed with autism, even when their symptoms are equally severe, for several reasons.
Several studies have shown that autism is around four times more frequent in males than in females, thus autism is more often associated with men. Many girls and women on the spectrum have never received an accurate diagnosis, so they are missing from the statistics.
Autism is a condition that affects a person’s ability to communicate and interact socially, and the symptoms vary from one person to another. The ways in which women display symptoms of autism tend to be different to men, and women’s symptoms are often less obvious than men’s.
In addition, if women and girls behave differently from the norm, their symptoms are more likely to be evaluated in the context of other mental health issues.
Studies have shown that the average age of diagnosis in women is around 20 years of age – much older than for the male population. As a consequence, education and healthcare professionals are often not aware of the specific needs of women with autism, which leads to delayed and inadequate support in education, and ultimately difficulties in fulfilling their own potential later in life.
Throughout their lives, women with autism often experience multiple forms of discrimination – based on both their gender and their disability.
Currently, around 90 per cent of people with autism in Europe are unemployed and have to rely on social benefits and or family members for financial support. All people with autism can have unique skills that may be harnessed to produce a high quality of work, yet they experience difficulties in gaining employment due to the communication difficulties and the lack of social skills associated with autism that make job interviews very challenging. In addition, those who have jobs often experience a lack of recognition and support from their employers.
Due to unemployment, and the lack of supported or independent living options for women with autism, many also have no choice but to live with their parents or family members.
Director of Autism-Europe, Aurélie Baranger, warns that “Action is urgently required to better understand the gender dimension in autism and the specific challenges faced by women and girls with autism.”
“It is important to raise awareness of autism in women to reduce under-diagnosis and misdiagnosis, and to combat the discrimination they face”.
While in Brussels, the women with autism from across Europe also met with Karima Zahi from the European Women’s Lobby and An Sofie Leenknecht from the European Disability Forum in order to share their experiences.
The ‘Autism in Pink’ project
The visit by women with autism to the European Parliament was part of ‘Autism in Pink’, a collaborative project to increase the visibility of girls and women with autism across Europe. The project is examining the prevalence of autism amongst women in the United Kingdom, Lithuania, Spain, and Portugal. Funded by the European Union, it is also developing knowledge and tools to support and educate girls and women on the spectrum, their parents, carers, teachers and health professionals.
Autism is a spectrum condition that affects the brain. It impairs an individual’s social and communication abilities and often causes them to display unusual or repetitive behaviours. Currently, around 1 in 150 people are being diagnosed with autism in Europe – totaling around 3.3 million people in the European Union.
Photo taken by Emily Hillier at EDF office in Brussels .