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Rachel – “I forget the world sees my sister differently to how I do”

For as long as I can remember, I have been close to my sisters. I’m the youngest of three – it feels like having two best friends who will always look out for me. I was drawn to Sibs because one of my sisters, Joanna, has autism and a learning disability.

When Joanna and I were in primary school, I realised I would have to do more to look out for her. Joanna got a diagnosis of what was then known as Asperger’s Syndrome when she was very young, and when I was too young to understand what it meant. At primary school, we were both bullied a lot. Older children would follow us home and call her names, like “r****d”. It was upsetting for both of us.

Things got better when I moved to a different school. Around this point, Joanna began attending a school for students with autism, where she stayed until she was 19. I began to understand more about her autism, as we went as a family to her school events, my parents met with professionals in our home to discuss Joanna, and I noticed the challenges that she had with social interaction especially.

Joanna and I have been through too much together to write in a few short words. Sometimes, we are so in our own little bubble, with our own quirks and jokes and stories that we love to share, that I forget the world sees her differently to how I do. I would say the most challenging times for me have been helping her to manage her distress. It can be very intense when she is upset. For example, when I attended her cervical screening appointments with her a few years ago she could not cope with the physical discomfort she felt. It was very hard to take care of her when she had a meltdown after her appointment – she was screaming and crying outside of our doctor’s surgery.

Sometimes, it’s dealing with other people’s lack of knowledge that can be hard. Because of her autism, Joanna has struggled sometimes to understand appropriate social boundaries. This has led to the police coming to our home in the past. It was always stressful answering the door to police – I genuinely feared for her safety at times. At one point, I was alone dealing with a police officer who asked if I could act as an appropriate adult to represent Joanna in court. I was 17, so this wasn’t possible. The officer did not seem to understand this or the impact Joanna’s autism and learning disability had on her.

The way that I see it, all families have challenges. It’s the way in which you learn to manage those challenges that brings you closer together. Joanna is now 27 and I am 24. We live together and we have made some really good memories, even with our turbulent past. Nobody can make me laugh like my sisters. Joanna is such an important person to me and I will always want to look out for her. That’s not necessarily because she has a learning disability – that’s because she is family. She will just need more support as our lives go on. Nowadays, we enjoy day trips together, playing with our pet rabbits, going to the cinema, and spending time as a family with our mum, my oldest sister, and my partner. I wouldn’t change a thing about our life together.

Would you like to help other siblings by sharing your own story? Please get in touch.