Carly looking to the side, against a dark background

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.

carly-jones-blog-3-resized
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.

15 thoughts on “It took me 32 years to get a diagnosis. Why is autism in girls still overlooked?”

  1. I have a very similar story in respect to my adult diagnosis of ASD. My son was diagnosed at age6, while going through the process my husband (ex husband now) and I kept having these “that sounds familiar” “just like me/you” “I was like this at his age” moments. Leading to a referral to Dr who evaluates adults for ADHD and ASD. Two months before my 32nd birthday I was given my diagnosis. There is much more to my story but this is not the time. 😊

    1. Oh wow so similar ! It seems to be the way doesn’t it that we are unaware of our diagnosis until we become mothers to diagnosed children .

      Your last sentence about so much more to say but not the time , I totally and utterly understand that and the weight of what lays behind that comment , so much to tell with such depth to it ,where can we even start to explain ?? Sending love and thanks for reading -Carly X

  2. I’m 30 years old now and currently going through my diagnosis. So far, the doc believes I have it. I also have a friend who studied the psychology of autistic children in university and has several autistic family members explain to me that I’ve likely got it. The results of my Aspie test are:

    “Your neurodiverse (Aspie) score: 168 of 200
    Your neurotypical (non-autistic) score: 57 of 200
    You are very likely neurodiverse (Aspie)”

    I’ve struggled all my life to achieve my goals despite being an intelligent person. I recently made a lot of big changes in my life to allow myself the work form home consistently.

    I recently wrote a blog post on this very subject and how I achieved consistency through balancing my life.

    I believe it may be of some helps to others. You can find it here http://agentblackhat.com/how-i-discovered-how-to-efficiently-work-from-home-and-stop-lazy-and-procrastinating-tendencies/

  3. “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.”

    This is just enraging to me, because even in 2008–even before that–several of the most prominent autistic people talking about their experiences were women/female-presenting: Donna Williams, Amanda (now Mel) Baggs, Temple Grandin, Dawn Prince-Hughes.

    It’s just baffling to me still.

  4. I was diagnosed last year at the age of 54 years my son was diagnosed at 33 yrs my grandchildren were diagnosed at 4 and 5 years. Other members of the family were diagnosed at various ages. As a child I was continually told ‘I could do better’ I would shut down, so was called a daydreamer. I never felt included or understood. I have spent so long trying to fit in that I have no idea who I am. I look forward to finding out.

    1. You are incredible ! to have gone over 50years with no support /understanding of your Autism is a phenomenal success story of your strength , much happiness to you and family – Carly X

  5. I’m nearly 50 and trying to get a diagnosis. But I’m worried that, because I’m creative, and enjoy social activities (but only when I feel in control and can leave when I get ‘socially exhausted’) I’ll be dismissed, like the writer of this piece. BTW, Uta Frith, who translated Hans Asperger’s work and made the world aware of Asperger’s syndrome, is a German woman living in the UK and married to a British man. Remember that when you hear anyone complaining about immigrants

    1. Id recommend the Lorna Wing Center in Bromley Kent for a gender neutral/female diagnosis ,they are fantastic at seeing past the stereotypes and seeing the persons Autistic traits regardless of how they present 🙂 that is where I was diagnosed X

      I hope it goes well ,Carly X

  6. I was diagnosed at 21 years of age, I am now 27. I find life very hard to deal with.
    One thing I find hard is I have never been on a date or been out with a guy at all and I cannot tell if someone likes me or not.
    I tried asking two guys out, not at the same time ofcourse, but on two different occasions. They both said no.
    I got bullied at school, told I was hideously ugly no no one would ever want me and I am starting to believe it.
    I will never ask anyone out now because I have lost all confidence and I have no self esteem.
    Does anyone have any advice, or had similar difficulties?
    How do you get a guy to like you when you have Aspergers and take everything literally?

    1. honestly? my solution was just to date other autistic people! I didn’t even realise how straightforward and comfortable dating could be until I met my current partner (who is also on the spectrum). no more struggling to explain my behaviours to neurotypicals – he just gets it!

    2. First of all I am so so sorry you have been treated so unfairly and called such horrid names , some people can be so cruel ; it hurts but be glad they showed their true colours FAST and you were not lead into liking them by fake kindness 😦

      I think dating is really hard for Aspergers people ,we tend to have a different type of attraction I think ? I know many non autistic people go for looks and fitness where as most autistic people I know go for intelligence or personality ; ultimately a good thing !!?

      I am probably the worst person to ask as have lived alone almost 9 years :0p but I hope one day to meet someone who has same interests as me and hope that if I carry on doing what I love I’ll find someone to love along the way ? If that makes sense ? And I’ll really appreciate it when it’s right (I hope!)

      Do you have a hobby /job/interest that may lead you to meeting someone with mutal interests as a starting point ?

      I think dating apps are quite dangerous for us Autistic people as people on dating apps lie so much and we are vulnerable to believe them 😦 there has to be another way surely ??! (Wracking brain thinking as I type !)

      Love Carly xx

      1. I personally would never use a dating site, it’s too easy for people to say things they wouldn’t in real life and it can make them seem to be someone they are not.
        I think it’s dangerous wether you have Aspergers or not, but that’s just my opinion.
        I guess I should just get on with my life and stop worrying about it and maybe one day I will meet someone.
        I just feel I’ve been waiting a long time and I feel like I’ve just lost my best friend because she is so busy with her new boyfriend she has no time for me. In fact this has happened with all my friends, so I feel left out at times. Thanks for responding and for the advice 😊

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