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It took me 32 years to get a diagnosis. Why is autism in girls still overlooked?

Carly is an Autism advocate, filmmaker and speaker. She wasn’t diagnosed with autism until she was 32, after two of her daughters were diagnosed. She found it a battle to get a diagnosis and started to notice a lack of understanding and resources when it came to autism and girls.

In this blog Carly shares her journey and talks about why we need to start recognising and supporting autistic women and girls. 

Growing up feeling different

My earliest memory is being the kid that couldn’t go to preschool without my mum staying. My mum actually got a job at the preschool so I would go! I remember it seeming very noisy and busy. All the kids were playing but I wasn’t. Then when I started school that didn’t change. I remember feeling very different then and things got even harder in secondary school. I was really anxious. I started realising that I never got invited to birthday parties. I couldn’t cope with bright lights and they actually made my quite hyper. My teachers just thought I was naughty.

My parents took me to see a psychologist at 14. He said I was just lazy and his advice to my parents – which is the worst advice you give an autistic person – was she needs everything new, she needs a fresh start. So we moved house and I started a new school but life just took a downward spiral for the worst. I got into all sorts of trouble, bad boyfriends. Obviously I had no understanding of how vulnerable and naive I was, no idea of the consequences of my actions at all. I ended up pregnant at 15 and living in a homeless hostel. I had my daughter who’s wonderful and I worked hard to turn things around, but there are serious consequences to not being diagnosed and not being supported.

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Carly at the UN, where she spoke about autism and girls

“You can’t be on the autistic spectrum because autistic people can’t act”

I have three daughters and two of them are autistic as well, which is how I found out that I was. My 14-year-old was diagnosed when she was six and my youngest was diagnosed when she was just two. In the process of trying to find out anything I could about autism and girls for them, I realised “oh this explains everything!”

I went to see an NHS psychologist who gave me a tick sheet with things like “Do you prefer parties or museums?” – you know, one of those. I scored quite highly on it but then he asked “What are your hobbies?” and I said “I love acting” and he said “Oh then you can’t be on the autistic spectrum because autistic people can’t act”.

I left it for a while, then I wrote to the lady who discovered Asperger’s. I wanted to film it so that no-one else would have to go through this alone. Because I felt so alone. She invited me to meet her and I finally got my diagnosis – on film! There was a mixture of emotions but overall it was complete elation. I had my answers and I could start rebuilding my life, understanding who I am. I always felt like a second class ‘normal’ person and now I know that I’m a top class autistic, so I’m fine!

Why is autism in girls overlooked?

I was told in 2008 by educational staff that it was impossible that I could have two autistic daughters because autism only happens to boys. Every book I picked up to try to understand and support my daughters all referred to “he” or “my son”. There was nothing for girls. I just thought why?

I think gender stereotypes are a big problem. Not only are there lots of women who are undiagnosed and unsupported, there are lots of men who present themselves in a more feminine way and they’re not diagnosed and supported either because they’re not the stereotypical view of what autism is – they’re not “train spotters” or like “Rain Man”. Also, female pain and female differences aren’t always taken as seriously. It’s always “Oh they’re probably hormonal”. Even my reaction to the sensory overload was seen as “Oh she’s in a bad mood” – and being autistic, I couldn’t explain my discomfort to them.

Then there’s what I call the ‘chameleon effect’ – masking your differences and trying to blend in. We do this just to survive in a scary, unpredictable world. Things are changing but there are still pockets in the UK where this is happening and girls aren’t being believed and supported.

Head and shoulders shot of carly in front of a brick wall

I want to make sure the girls in our country are protected and supported

Globally there needs to be more recognition of autism and girls. In the UK it’s a really exciting time because I’m looking around and seeing so much more awareness. People finally believe we exist – yippee! That’s my first eight years done. Now my next eight years will be about making sure we have equality; making sure we have the same protection and opportunities as everyone else.

Some things that happened in my life were awful but in hindsight I’m grateful now because I know how important it is to make sure that the girls in our country are protected and given proper support. I spent 32 years of my life thinking I must be “stupid”, “crazy” or “unliked”. Being diagnosed gives you an understanding that this is how you see things and this is how other people see things differently to you. It gives you self-awareness. I’ve got a lot more confidence now. The hardest thing is knowing who you are after years of it being eroded away. I’m still discovering myself now but it’s quite exciting. I’m getting there!

Find out more about Carly’s story on her website. You can also buy Carly’s book about autism and girls.

If you have a story you would like to share, get in touch with the stories team.