Tag Archives: Aspergers

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.

Celebrating Autism Awareness Month

April is Autism Awareness Month, so we asked the Netbuddy community (now part of Scope) for some of their top tips. Find out how a ceiling fan and some old yoghurt pots could change your life!

Jacob’s worry box

My son Jacob is seven and has Asperger syndrome and high functioning Autism. He has very high anxiety levels and worries about lots of things. Every night, after story, we do “worry time”. We talk about about all the worries he has put in his “worry box” (his head) throughout the day. It’s a really good way of helping him deal with his anxieties/worries with lots of reassurance and cuddles from his mum.

Carry a surprise card

If your child has Autism or Aspergers, it’s worth carrying a ‘surprise’ card with you for unplanned situations (like unannounced fire drills). On the card, have a surprise symbol (an exclamation mark) and “SURPRISE! we are going to x, y, z”

Routines

Remember that routines are important in everyone’s life. Missing a step can make you feel “not quite right”. Think about how you feel if you sleep in and don’t get to eat breakfast or have a shower. This can be useful when trying to understand why someone is struggling when they can’t complete a routine.

Say it with an emoji

Sometimes my brother, who has autism, finds it hard to explain how he is feeling. But he likes choosing an emoji icon on the phone/ipad to represent an emotion.

Sensory wall

We’ve created a ‘sensory wall’ by sticking old yoghurt pots on the wall – you can also put bubble wrap, biscuit packet insides, corrugated paper, sand paper ….

Join in

My son likes it when I join him in his “autistic activities” like lying on the floor and just staring at the ceiling. Once he notices that I am there he asks for blanket and we just relax like that! Try seeing the world from their eyes sometimes.

Record the answer

Tim keeps asking the same question over and over. I bought a key ring on which I recorded the answer. Now he can press the button as much as he wants without driving me so crazy.

Scented bubbles

Scented bubbles are great for sensory stimulation. Many sensory catalogues and supermarkets sell them.

Explore alternative activities

Try replacing repetitive behaviour with another activity that has the same function. For example, if your child flicks their fingers for visual stimulation, try giving them a kaleidoscope or a bubble gun.

Toy libraries

Sensory equipment can be expensive so try before you buy. Look out for equipment in toy libraries. STEPS, Cerebra and now Newlife Foundation have national schemes. You may find schools/centres locally which offer the same.

The Reason I Jump

I recommend this book if you’d like to understand why autistic people behave the way they do. The Reason I Jump: One Boy’s Voice from the Silence of Autism by Naoki Higashida. It’s heartbreaking but enlightening. The Reason I Jump

It’s OK to be different

Always choose your battles. Be sure you are doing things that will help your child rather than simply make them “fit in”. Sometimes it’s OK to be different!

Taking turns

To support turn taking teach children how to use a sand timer so that they can show they are asking for a turn and the child on the toy can see when their turn finishes. A large bright coloured 3 minute timer is excellent.

Encouraging eye contact

I put stickers on my forehead as a target for my son to look at. This helps him to look at people’s faces and people feel more like he is engaging with them, despite him still struggling with eye contact.

Traffic lights

I use traffic light cards on my key ring to control my son’s behaviour. Green means “ok, good, go for it”. Yellow means “calm down, you may hurt yourself or someone else if you carry on”. Red means “no- stop right now!” Used alongside countdowns these techniques have made things a lot more manageable.

Tents

Play tents for kids make great sensory spaces when kitted out with everyday items e.g. fairy lights, hanging old CD’s, tinsel, etc.

DIY social stories

I have been creating my own social stories using pictures of my son and clip art pictures. You can find images of most things through Microsoft Office and easily type up your own personalised stories.

Use mirrors

If looking directly into your eyes is too invasive for the person you’re supporting, try using mirrors to see if they can look at you that way.

Early bird shopping

If shopping for clothes or shoes is a nightmare, try asking the manager if they’ll open the shop 15 minutes earlier to allow you to try things on without an audience. Our local Clarks suggested it to us, and it made it stress free for all of us.

Disco shower

I’ve bought a multi-coloured shower head on Amazon. The shower head flashes different coloured lights while the water is turned on. My son, who previously hated washing, loves it now!

Avoid queues

My son can’t cope with standing in queues. I always go to the front of the queue and asked nicely if we could come to the front. Nobody ever minds when I do. It isn’t fair on him or anyone else to make him queue.

Teaching social rules

For people with ASD, learning social communication rules is a bit like learning a foreign language. It’s not impossible to learn, but it has to be taught, and it takes time.

Scream time

Try fun games that involve screaming as loud as you can then whispering quietly. We do this before we go out. It reduces my son’s anxiety and also prepares him for what is acceptable in private and in public.

YouTube

We find YouTube invaluable for preparing our son for a new activity or venue, such as horse-riding or a theme park. You can find videos of most activities and places online.

Rock on!

Lisa loves rocking which sometimes drives us a bit barmy. We bought a rocking chair for the house and a swing for the garden. These satisfy her sensory needs and make it more comfortable for us to cope with.

Ceiling fan

We’ve discovered the best thing that stops a tantrum in our house, would you believe, is a ceiling fan. Screaming starts, turn the fan on and the spinning calms James down immediately. Best £45 ever spent!

Find out more about getting involved in World Autism Awareness Month 2014 on the Ambitious about Autism website.