Tag Archives: activism

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.

The controversial top five digital campaigns of all time

These are the best digital campaigns for social change ever. Full stop. No question.

Or are they? Who are we to say which are the best? Well, we have twice been named Third Sector Digital Campaign of the Week in the past year (though er, there must have been 52 claims to that fame!)  Certainly it’s a hard task deciding which campaigns are best, in part because there’s no simple measure of what a good campaign is, especially in digital.

But as we recruit for an exciting new digital campaigning role (apply here!), we thought we’d lay down a few controversial loves of ours to spark the debate about who should and shouldn’t make it into the list. What do you think? We’d love your comments.

1. Abolishing the slave trade… in the 1700s

“Not a digital campaign at all” you cry! Maybe so, but 200 years ago it spawned some of the most popular online campaigning tactics we all know and love (or hate) today.

Would petitions be so popular and the likes of Change.orgAvaaz and 38 Degrees exist if activists hadn’t ridden on horseback round the country collecting signatures and presenting them to Parliament? (Ah, the good old days: Parliament had to stop its business for them to read out the names every time a petition appeared!)

They invented the first well-known infographic — exposing the inhumanly cramped conditions in slave ships. Information was beautiful (or terrifying) back then too.

And much more.  Yah boo to many campaigns of today, digital and otherwise.

Strengths: Many.

Weaknesses: Computers and the internet hadn’t been invented yet, but they didn’t let that stop them. Modern-day slavery is sadly still around today, although they made a massive change at the time.

2. Book burning, anyone?

Have you ever tried inviting people to a ‘book burning party’?  If you do (like these people), you’ll get a pretty strong reaction.

This was the inspired, creative, not-uncontroversial campaign to save a library and raise taxes (maybe we should have made them number one just for getting public support for higher taxes!). Watch the video or read what happened to get the full lowdown.

Strengths: Cheap (a few lawn signs – everything else digital). Creative. Quickly changed public opinion. Clear outcome: a vote.

Weaknesses:  Is it a one-hit wonder? Will these kinds of shock tactics build a longer term movement? 

3. Twitter freedom of speech is brilliant/terrible/dead

Cast your mind back to 2009. Three thousand miles away 30,000 people in Ivory Coast, one of the poorest countries in the world, claim to have been injured by Trafigura, a company dumping toxic sludge. The company’s being hit by one of the biggest lawsuits in history…  But no-one even knows about it, because they go to court and get an injunction and stop the press reporting on it, PLUS a ‘super-injunction’ stopping them even talking about the fact they’re being stopped from reporting on it.

Modern madness, right? So what happened? A combination of a brave MP, journalists – and tweeters. Twitter played a big role in lifting the lid on what was happening, revealing the scandal, injunctions-be-damned, just one example of how valuable a free Twitter is.

But more recently the milk has soured.

The same freedoms meant tweeters felt they were free to virtually tar and feather someone as a paedophile. So surely it’s right to curb this with our libel laws?

Or are we in danger of losing one of the most valuable modern forums for free speech?  And what about the threats to social media after Leveson?

Strengths: A free Twitter means people power can beat legal, corporate and political power. That can be an amazing and wonderful thing.

Weaknesses: The halo of Twitter free speech is looking both tarnished and threatened. Also, exactly which people have the people power on Twitter? It’s still a case of having the skills, education, time and internet access to use them, a challenge for campaigners who want to genuinely empower.  

4. Your knife or your life

The Met are not known for innovative attitude- and behaviour-change campaigning, but they did this – dramatic, engaging, it’s hooked in more than a million people.

The campaign is a series of YouTube videos where you see what’s happening through the eyes of a teenager and you click on-screen to choose what happens next. Every choice you make has a consequence… It’s hard to describe what it feels like being stabbed to death on screen.

A controversial choice because: does it even work? That’s really the question – and we don’t know the answer. And how do you even measure the success of something that’s so ambitiously trying to change attitudes and behaviour change, which are notoriously hard to assess? We love the ambition, creativity and execution though.

Strengths: Like all good communications it’s story-based. It’s also visceral, heart-stopping, simple and original. It goes to where many young people are at: on YouTube.

Weaknesses: We haven’t seen any evaluation of what it actually changed – are fewer young people carrying knives as a result or is this just a cool set of videos? We’d love to know.

5. We Are Spartacus (we are not big charities)

While many disability charities (including us) were struggling to mount big public campaigns to oppose welfare reforms that were unfair to disabled people, an unexpected one took off.

Forget Kirk Douglas (or the remake), We Are Spartacus is a group of disabled people starting a grassroots online campaign, not content with what was happening and intent on getting their views to the Government in a big way. They used free blogs, Freedom of Information requests and crowdsourced responses, they pushed and pushed — and broke through into the Twittersphere, galvanizing many people and helped to influence what was happening in Parliament.

Some disability charities (including us) struggled to know quite how to engage with We Are Spartacus at first and we’re still learning – because although we often have the same goals, at times we work so differently.

But this one is controversial above all because it poses some tough questions for us and every other big charity out there: if they can do this with next to no resources, why aren’t we achieving a whole lot more with our digital campaigning?

Awkwardness and challenges can be good though. Right?!

Strengths: Without money or a traditional organisation, they’ve helped to reshape disabled people’s online campaigning.

Weaknesses: Disabled adults in the UK are three times more likely NOT to have access to the internet as other people, so there’s still a big challenge to engage disabled people in digital campaigning.

Who didn’t make the cut?

Any top five is of course going to miss out some big-hitters. Controversially, here are some that didn’t make it in:

Obama [Yawn, right?] OK yes, we all know the Obama campaigns have done some great things online, including email-marketing-on-heat and got large numbers of people donating and taking part. Hope, yes. But where’s the change we all believed in?

Kony 2012 We also couldn’t bear to include Kony because it so often gets missed that the Kony campaign started in the real world through lots of hard work building support on student campuses, before it went digital. Amongst other criticisms we have, it was the wrong campaign goal (do we really need more military action) and what about the views of the people whose own lives were affected??

Avaaz, 38 Degrees, Change.org… We’re interested in what the big online campaigning sites are doing and hope to work with them more. But the tough part we have to do is start campaigns from scratch, which are often about lots of hard graft and creativity rather than a quick win. So, sorry guys: not for this list.

Thunderclap It’s an interesting idea and we’ve certainly tried it out. We haven’t heard of it actually changing much though, and we’re concerned that campaigning organisations (including us) could use it as a substitute for creating real social media conversations that genuinely get loads of people talking and tweeting. Have you heard different? Check it out here if Thunderclapping’s new to you.

The Arab Spring and many other campaigns elsewhere in the world So much has been written about the role of social media in the Arab Spring but we feel we just don’t know enough to include it here. Also: there are probably many other exciting digital campaigns in parts of the world we’re not well enough connected to to know about.

Britain Cares It’s our current campaign, so we have to give it a plug! Check out our film with Stephen Fry and exciting/zany photos people are sending in.

And more… Hope you enjoyed our (hopefully) thought-provoking list. What would you add?! And if you’re interested enough to read this far, would you like to apply for our exciting digital campaigning role or could you share it with your networks?  Thanks! 🙂