Carly is an Autism advocate, filmmaker and speaker. She wasn’t diagnosed with autism until she was 32, and now works to raise awareness of autism and girls.
For End the Awkward, Carly shares some of her own awkward experiences, especially those related to a lesser known aspect of autism – face blindness.
I was diagnosed with autism at 32. It’s typically seen as a male condition, but I have three daughters and two of them are autistic. Everyone I knew with autistic children had sons. There was nothing for girls. So I went on the internet and looked up everything I could about autism and girls. That’s when I first thought “I’m autistic too!”
Misconceptions about autism
When I was 14 my parents took me to see a psychiatrist because I was having difficulties. I couldn’t go to school, I was constantly anxious, I spent a lot of time in my room. He just said I was lazy. Then, after my girls were diagnosed and the penny dropped for me, I went to see a clinical psychologist. He made me do a test and, although I scored highly, he asked about my hobbies. When I said I’ve always liked acting, he said “Well you can’t be autistic then because autistic people can’t act”.
He also asked if there was any chance I could be making this up because autism in girls is so rare it’s impossible to have two in one family. So I went to the National Autistic Society and I decided to make a film about getting a diagnosis. I ended up being diagnosed on film!
I think it’s important to teach parents and to show people that there shouldn’t be any stigma, it’s okay to be autistic and it’s okay to be a parent and be autistic.
Awkward moments with face blindness
Before my diagnosis, I had no idea that face blindness even existed. Now I realise I’ve been dealing with it all my life. If someone wasn’t where they should be, like if I saw my teacher in the supermarket, I didn’t recognise them. People must have thought I was rude.
Now that I know I have face blindness, it can be even more awkward, because if I think it might be someone I know I start hugging them! Sometimes it turns out to be a complete stranger. I have a friend who has distinctive dark hair, often wears a checked shirt, and spends a lot of time in a café that I also go to. So one day, I walked into the café, saw a man in a checked shirt, with similar hair and I kissed him on both cheeks. Then I realised his wife was looking at me like she was about to hit me. It was the wrong person!
Another time, at New Year’s Eve, the person I was with was wearing a shirt that was very popular at the time. Midnight comes and we had a kiss, as you do, and he tapped me on the back. I was kissing a completely different person! It didn’t go down well. If I’d had my diagnosis at the time I could have said “Sorry – I’m face-blind”. What a good excuse!
I get words mixed up a lot
Autism is a communication and language disability, which affects me in different ways. One is that I tend to just say what I’m thinking. It’s like being Jim Carrey in Liar Liar and I can’t stop it. Everyone says “Oh you’re such a funny person” but I don’t mean to be a funny person at all. I often take things too literally as well. Which can be really awkward.
I often get words mixed up. For example, the words necklace and knickers just sound the same to me. It’s very important that no-one ever asks me to take my necklace off! Another one is I often mix up how and who, which can be awkward as I often ask “Who are you?” rather than “How are you?” or if I’m being asked “How are you?” I may reply “Carly?” or if I’m asked “Who are you?” I may reply “A bit chilly actually”. As you can imagine, this, on top of not recognising people, makes the outside world rather daunting!
Ending the awkward
When you get diagnosed you get self-awareness. An understanding that this is how you see things and this is how other people see things differently to you. I spent 32 years of my life thinking I must be “stupid”, “crazy” or “unliked”. Now I know why life was, and still can be, awkward. I hope by sharing my experiences I can help people.
It’s okay to say to people “This is how my disability affects me”. For example, if we arrange to meet, I ask if they can send me a photo of what they’re wearing that day. A lot of my autistic friends, we naturally do this with each other. So we’ll say I’m stood here, I’m wearing a blue coat and I have a red bag. It might seem weird to non-autistic people so we need make people aware, tell them how they can help. Decent human beings aren’t going to trip you up on it. I think anybody with a disability would prefer that people ask questions about what we need. We don’t mind. Not asking can break down any communication and that’s really sad.
When I saw End the Awkward I thought this is really good. Not everyone wants to listen to the serious side of things but boy there are some funny awkward stories! I think humour is the best way to get people to remember something. Information is really important but sometimes it can feel a bit like “Am I studying for this?” I think a joke helps bring people in.
To find out more about Carly’s work, visit her website.