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Hearing the voices of the "lost girls" with autism

Mark Goodman reports from a major conference that heard moving testimonies from the so often silenced voices of girls and women with autism

Autism

Professional Social Work magazine - 29 May

I’m a neuro-typical man, and as I sat in the conference room I could hear the many voices of autism telling me to sit up, listen and take note that my way of viewing the world was not the only one that has validity.

At times I felt ashamed and contrite - but mostly I felt honoured to be sitting amongst people who were going out of their way to look me in the eye and tell me with one united voice that they would no longer remain silent.

Having ignored their individual voices for so many years, I was being asked to stand together with a crowd of girls and young women who saw the world in a different way than I did.

I, and everyone else at the Girls with Autism conference, were being asked to join in and become one of those many voices to ensure that girls and women with autism no longer go “unidentified, unnoticed or unsupported”.

This is a group of people who aren’t known for their ability to engage in social circles but who now wanted to make a noise and get some attention. It used to be believed that the ratio of girls to boys with autism was one to 15. The actual ratio is nearer one in two and this misconception has been challenged in a ground-breaking book - Girls and Autism: educational, family and personal perspectives -launched at the conference.

The conference, hosted by teaching union the NAHT, was attended by mainly educationalists but the messages that came through were for everyone’s ears and should be heard by all professionals supporting people with autistic spectrum conditions.

Barry Carpenter, a leading academic in special education needs and the UK’s first professor in mental health education, said girls with autism had been “misunderstood, misdiagnosed and mistreated” for too long.

Girls and young women with autism told their unique stories at the event, describing what it’s like to live in a world of injustice where rights are routinely oppressed, and voices silenced by a society that seemingly cannot take the time to consider a different way to view the world.

These were the real voices and no one failed to be moved by the passion and honesty with which young people presented their lives. It was impossible to miss the sense of pain and hurt that had been inflicted upon them by the arrogance and ignorance of a neuro-typical society that fails to accept difference and silences those who are not like them.

And yet the overwhelming impression was not despair, but hope. Hear these voices yourself by watching the video that Carrie and David Grant constructed from the contributions of over 60 people, 46 of whom are female, all with something to say about living with autism.

Other moving and insightful testimonies from young girls with autism and their mothers followed. Grace Dolan read a poem about her adolescence and the abuse she suffered. Painful at times, at one point her mother rose to support her during an obviously difficult recollection, but Grace told her to sit down as she was "all right". She was given a standing ovation by the audience.

Such straightforward and honest representations became a theme for the day.

Talia Grant, aged 16, told us of the challenges through which she had struggled to gain her first job - and some job it was too, as the first autistic and black actor in television soap Hollyoaks.

The event also included the latest findings from leading academics in the field of austism.

I attended a workshop which highlighted the increased risk of mental health issues amongst girls where a diagnosis of autism has been missed. Social media was also seen as something that could expose girls (and boys) with autism to sites where behaviour such as self-harm is 'normalised' and can trigger them into action.

For me, and for most people at the event, the highlight of the day was the first key note speech. This wasn’t a single speech but a conversation between five young women from Limpsfield Grange School - a residential and day school for girls aged 11 -16 with communication and interaction difficulties.

Facilitated by their headteacher Sarah Wild, they said it like it is. The answers they gave to a series of exploratory questions about living with autism were delivered with humour and insight. They told us about the pain, the love and the learning that comes from living in a world where people around you seem to speak a different language, how you learn to camouflage your autism by adopting the mask of the neuro-typical response we take for granted but which can exhaust a person who has had to hold this in place throughout the day, only to come home and melt into pool of uncheckable anxiety.

Carrie Grant, a mother and advocate and the second keynote speaker, reminded us of the aim of the day. She was there, she said, to “raise the voice of the lost girls”, to hear about the power of making a united sound and the humanity of making the world a kinder place.

Speaking after the event, guest of honour Baroness Sheila Hollins, emeritus professor of psychiatry of disability at St George's Hospital in London, summed up how all those who attended felt: “To hear from girls who are autistic themselves talking with humour and passion about what it is like to grow up misunderstanding social cues and being misunderstood was such a powerful way for the participants to deepen their understanding.”

Mark Goodman is a social work student at the University of Bath

Girls and Autism: Educational, Family and Personal Perspectives, edited by Barry Carpenter, Francesca Happé and Jo Egerton is available now from Routledge

This article is published by Professional Social work magazine which provides a platform for a range of perspectives across the social work sector. It does not necessarily reflect the views of the British Association of Social Workers.