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Charlie's story

Charlie has kindly agreed to share her story with us. We spoke about her diagnosis journey, challenges, strengths, and what helps her day-to-day.

What is one thing you wish you could tell your pre-diagnosis self? No one gives a shit if you don’t go to the party... You don't have to do the things that make you feel uncomfortable.

How would you describe yourself?

I’m Charlie, a recently diagnosed, autistic 36-year-old woman. I’m an extroverted introvert, semi-retired people pleaser, and former boozehound. I am absolutely convinced that there should be an Oscar category for social camouflaging (of course the awards should be delivered quietly without a fuss or any need for socialising). I love nice smells, comfy clothes, Friends, theme parks, bodyboarding, and going away somewhere quiet. I really dislike metal cutlery.


How did you find out you are autistic?

My daughter was showing autistic traits and got a diagnosis at the age of four. I didn't know much about autism at the time but did a lot of detailed research because I wanted to get her the right support. I found that I recognised a lot of the traits in myself.

Prior to that, my understanding was the more "male" perspective seen in the media. I hadn't seen women "like me" with the same traits. I started making a list of traits and took them to my GP. I told him I wanted to discuss a referral for an autism diagnosis... his response was "who for?" and he seemed genuinely surprised when I said it was for me. I felt as though he wasn't going to believe me, but in the end, he was great and signposted me to some resources. He put in a referral to a family psychologist which is the adult pathway here.

There was a really long wait for an initial assessment and the whole process was quite confusing and poorly explained. Eventually, I had an "initial" assessment where the psychologist told me that I clearly have autistic traits but do not meet the criteria for NHS funding for the full diagnostic assessment. I got really upset and confused. How could both of the things the psychologist was telling me be true?

Apparently, because I had a job, I was not struggling enough to meet the threshold. The next day I had a complete meltdown and phoned back in tears asking "am I autistic or not?!" She said she didn't want me to pay privately for someone to tell me what she could almost tell me already... but I didn't understand. She then told me I was taking it too literally... I told her if I am autistic then, of course, I would be!

They kindly wrote me a letter confirming my autistic traits, which helped me access some workshops. I attended with my husband and they gave some great strategies. They also said if I was really struggling I was eligible for one-to-one support over the phone.

Then lockdown came, and it all took a bit of a pause. I was the happiest I had ever been... all of the things I struggle with were suddenly illegal! It was amazing. But, as that ended, it all felt much harder again. I was really struggling, not sleeping, feeling really anxious and quite lost. I phoned up to book a support session but the waiting list was so long.

Over the next few years, my husband would phone every so often to chase (I found it too stressful to call). I ended up on anxiety meds. Then, out of the blue, I got a confirmation of a diagnostic assessment! Presumably triggered by how often my husband had been calling to say I was struggling, but I'm really not sure. I finally got my diagnosis aged 35.


How did you feel about your diagnosis at the time, and has that changed since?

When I started to recognise those traits I just felt like I needed concrete answers. Once it was confirmed, I felt such a sense of relief.

It finally gave answers to all my questions... Why do I find these things difficult but others don't? Why do I have to script conversations and rehearse everything? Why do I have to prompt myself to look at others? It felt really validating.

It also felt like "permission" to do what I needed to do. I knew about fidget toys before my diagnosis, for example, but I didn't feel like I was allowed to use them.

Since then I've continued to have waves of relief and feeling vaidated, but I do still get a bit of imposter syndrome. I think that's just part of processing it. I feel more confident when I speak to other autistic women. Yes we're all different, but with so many of the conversations there is a lot of "yes me too, I get it!"

I have also had moments of feeling very frustrated that I find things difficult. I have to practice reminding myself it is ok, and not just strive to make things easy that might never be. If it will always be hard, what can make it easier? Maybe I avoid it, or do something different.


Do you wish you’d been diagnosed earlier in life?

That is a really tricky one. I struggle to imagine what it would have been like if I had known. So I suppose not, because I am where I am and struggle to imagine a different life.

There are behaviours and coping mechanisms that I now know I did because I was struggling. I used to drink, and have been sober now for nearly five years. Looking back I used alcohol in situations that, as an autistic woman, I was likely to find difficult. If I had realised, I would have stopped sooner. It was self-medicating, and that's problematic. It was only once I'd stopped that I could see the links. That is one area where I think knowing sooner could have had a big impact.

What is one thing you wish you could tell your pre-diagnosis self?

No one gives a shit if you don’t go to the party. Saying no and respecting your own boundaries is ok. You don't have to do the things that make you feel uncomfortable.


What is most difficult day-to-day, and what are your coping strategies?

Brushing my hair

Brushing my hair is a big sensory issue for me. I only do it when it gets to the point of either brushing or having to go to the hairdresser to get it sorted. To get around this I will give the brush to my husband and he’ll do it. I also end up spending lots on shampoo and conditioner to try and avoid knots.


Sometimes I misunderstand the context of something or blurt out things that make perfect sense to me but probably seem really odd.

In a team meeting last December, someone asked “has anyone got any specific festive snacks they like?" I blurted out “marzipan” and everyone looked weirdly at me. Then I worried people were expecting me to bring marzipan to the Christmas party... It made sense to me because on Christmas cake the marzipan is the only bit I like. My brain jumps quickly and makes links but I don’t always explain them.

This is probably the area I’m working most on as I get to understand my autism. I'm trying to be more vocal about things I need support with around communication. I now ask what certain phrases (usually metaphors or idioms) mean.

At work yesterday I was really frazzled from travelling. I knew I needed to wrap my head around something for a mock interview, but I couldn't process it. So, I messaged someone to call me and go through it step-by-step and that helped a lot. They didn't mind, and just saying "I can't process this, please can you explain in person" made things a lot easier for me. He later sent a step-by-step guide including some extra prompt questions I could use and examples of what to say.

My routine

Routine is really important. My days can look quite different but there are specific things I have to do every day. If I don’t get to do them I’ll not know what to do with myself and get quite distressed.

For example, when I finish work, my whole family knows I need to transition. For me, that means 30 minutes between finishing work and going downstairs (if I'm working from home). I change out of clothes into PJs, take off my makeup, and have a lavender bath. If I don't do that I get overwhelmed and cannot eat.

Having lots of interactions in one day

My brain gets overloaded if I have lots of different interactions or meetings in one day. I call it "having too many tabs open in my brain". It's a combination of a lot of things: the energy of masking, processing what others are saying, remembering things, responding to them, and then switching to an entirely different topic. It's information overload. Even if the environment is calm, that can still be too much.

Eating during the day

I can’t eat during the day if I'm working at home. It is too difficult to transition between work and home mode. I feel different after I've eaten and can't transition back. I will only eat when prompted to eat, for example, if I'm in the office and people go out for lunch I will eat because it is scheduled and expected. At the weekend I will eat three meals because there’s not that transition between different "modes".


What does autism help you do better?

Lots! I can hyper-focus. It allows me to fixate and learn things incredibly quickly when I get into that zone. This can open up new opportunities and experiences, for example learning Arabic helped me before a trip to Morocco.

I think autism helps me do my job better. I know masking has a detrimental impact if you’re doing it too much, but it helps me to perform at work with things I might really struggle to do without masking. Because I’ve got a mask at work, it gives me a feeling of being consistent.

Autism gives me an understanding of how things can be made more accessible and inclusive generally. Some simple things we can suggest that make things easier for anybody. That insight feels like a gift.

Another real strength is self-awareness. I really know my needs. Partly out of necessity - I need to adapt a lot of things. But that awareness means I can ask for what I need in a way that not everyone can.


Finally, do you have any special interests? What are they?

My work (in the community development sector) is a long-term special interest. I will continually research new practices.

The other big long-term ones are Disney and Friends (often I communicate in Friends quotes but forget not everyone would get that!)

Others come and go. These are very fleeting but really intense. They will disappear almost as suddenly as they begin. Disney pins was one, I ended up collecting so many of them and really enjoyed being a "Disney pin person", but the interest suddenly disappeared and I was left with loads of pins... Other brief ones have been horses and Morocco.


Thank you, Charlie, for sharing your story with us.

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Lauren x


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