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Making a difference for autistic girls and women

On 27 January 2017 in central London, Carrie Grant spoke at ‘The Big Shout – Girls on the Autism Spectrum’, alongside many other high profile speakers who are all passionate about SEND issues, in particular girls with autism. Here Carrie shares her hopes that the voices of autistic girls and women will become better heard and understood by the healthcare and education systems, and in the wider world. 

What happens when you have no voice?

As a vocal coach, I know that the biggest fear of any singer is the fear of losing their voice. Not just because they may lose their livelihood but because their voice is who they are, it’s the sound that most represents them, it’s their identity and any threat to identity causes trauma and distress. In the same way, trauma itself can make you literally lose your voice.

I think it is apt that we called this Autism and Girls event The Big Shout.

How does an autistic person get heard and understood? How do they find their voice? How do we hear their voice? And are we giving space to hear the autistic voice? Are we truly listening or are we demanding autistic people conform to the neuro-typical mould in order to make our neuro-typical lives easier?

The autistic voice is a different voice, with a worldview that may be quite different to the predominant voice we are used to hearing. Learning the autistic language is like learning any new language, it’s complex, it’s difficult when we start, but once we are flowing in it, it can be magical and amazing.

Within the autistic world, there is a very small voice, one we do not hear enough, one that has been hugely overlooked and that is the voice of autistic women and girls. To understand this voice we must understand the female presentation. What does autism in girls look like?

Let me introduce you to my daughters.

When Imogen (now 11yrs) was two years old we started to notice she often didn’t respond when called, she would put her hands over her ears a lot and her words were minimal even though she could speak. She would like to wear all her clothes off one shoulder and developed a fascination with buttons on clothing. I discussed it with the health visitor and she talked to me about autism. When she described what people on the spectrum were like it also rang bells for our older daughter Talia (now 15yrs) who was then seven years old. Talia always lined her toys up, hated to be held, could only sit in a certain chair at the dinner table, with a certain plate/cutlery etc. Both girls were diagnosed on the same day in 2009, Imogen with high functioning autism and Talia with Aspergers. Our 22yr old, Olivia was diagnosed with Dyspraxia at 11yrs old (2006) but then at 18yrs old had a further diagnosis of ADHD. ADHD can have a number of spikes in the diagnosis and she also has some autistic traits.

Olivia has just completed her Degree at The Guildhall School of Music and Drama and is now signed to a top agent and doing very well as an actor. Anxiety is probably her biggest challenge but she is using strategies and is very pro-active. Talia has had terrible school experience, there has been a lack of understanding and she has been badly bullied. This has really hit her mental health. Getting autistic girls through their teenage years does seem to be a real challenge. Talia is magical to be around. She is an amazing artist, actor, singer, dancer and has so much potential. It’s really about handling her fragility and anxiety.  She will remain quiet in class and be inwardly melting down. Imogen is quite the opposite - like a terrier, strong and loud! Her challenges are the need to say what she thinks...kind or unkind...out loud…very loud. She’s super-clever, great at organization and hilariously funny.

I may have been preaching to the converted at our conference this week.

But if we, the converted, shout loud enough we will be heard.

If we, who see the magic but also understand the challenges begin to share our stories, write our thoughts on social media, we will be heard.

You cannot stop us because we are a growing voice.

As parents, as psychologists, as teachers and SENCo’s, head teachers and neuroscientists – as we humbly add our voice to the autistic voice we will be heard.

The Big Shout is about giving a voice to the voiceless; a voice to autistic girls who have so much to offer but who are so often overlooked; a voice to the autistic women who have struggled to get a diagnosis, struggled to understand themselves and struggled to fit in. The Big Shout is about giving a voice to the parents who tirelessly, relentlessly fight on.

The Big Shout is about all of us raising our voices and making a difference for autistic women and girls.

We will be heard.

© Carrie Grant Jan 2017

On 27 January in central London, Carrie Grant spoke at ‘The Big Shout Conference – Girls on the Autism Spectrum’.

About Carrie Grant

Carrie is an award-winning Broadcaster, Vocal Coach and Campaigner. Her extensive TV work has included being a judge and vocal coach on BBC1’s Fame Academy and she has worked with Take That, The Spice Girls, Michael Jackson, Gwyneth Paltrow, Mariah Carey.

Carrie’s awards include a BASCA Award for services to the music industry, a MOBO for Best Gospel Act, and a BAFTA for BBC1’s Glee Club. Public speaking engagements have taken her to the House of Lords, Downing Street, Party Conferences, Schools  Conferences; Business Colleges, World Health Seminars, and Mumsnet.

Carrie is a keen campaigner for change in our healthcare and education systems and for the celebration of Neuro-diversity. Carrie has Crohn’s Disease and cares for four children, all with special needs. She sits on the UK’s largest Health Commissioning Panel representing Mental Health and Learning Disability and is Patient Lead for the College Of Medicine.

First published 30 January 2017