Hi everyone, I’m Cassie. I don’t remember a time before my only sibling was diagnosed with what would now be described as level 3 autism and a severe learning disability. Although I have many wonderful memories of growing up with my sister, there were also aspects of our home life that were intensely challenging and volatile, and she will always have extensive care needs. For this piece, I’ll be focusing on some of my experiences as a sibling who, although they love their family deeply, isn’t a carer themselves.
Even when my sister and I were still very young and we didn’t yet know the full extent of her disabilities, my parents agreed that they didn’t want me to become her carer. They wanted me to have as normal a childhood as I could, with access to future opportunities that I wouldn’t have if I could never leave their home. I still remember being a bit hurt and confused as a little girl when I told my mum that I’d live in a house with my sister when we were grown up and I’d look after her forever, only for my mum to give me a big hug and tell me that although it was a lovely thought, no I wouldn’t. I would have my own home and my own life when I was grown up. It was their job to make sure my sister was taken care of.
I spent my childhood playing with my sister and was fiercely proud of her, but my family was always clear that I was not to see myself as a third parent. Although I provided bits of help here and there, they never let me spend hours supervising her alone, change nappies, clean up after her, or get up with her in the night. I was allowed to retreat during meltdowns and epileptic seizures. I didn’t get involved with any of the complexities of securing her educational rights or benefits. My parents did all of this themselves. They went out of their way to make sure I had as much time and space for regular childhood experiences as possible, and it’s because of them that I was able to complete school work, see friends, pursue hobbies, and get relatively unbroken sleep each night.
When it came to matters of the future, my parents were adamant that there was no question over whether I would be able to move out, attend university, have a job, or start my own family if I wanted to: of course I would, and they’d be cheering me on the whole way. Meanwhile, they assured my sister’s lifelong care by finding a specialist residential placement for autistic adults with complex learning disabilities, a decision that was painful for everyone despite us all agreeing that it would offer her a greater level of support than she could ever have at home, and despite it being clear, both then and now, that it was genuinely in her best interests rather than just in ours.
It’s now been seventeen years since we both moved out of our parents’ home. I’m writing this while my own young son smiles and plays with his train set, and I’ll soon be starting another day of enjoyable and fulfilling work for a learning disability charity. My husband and I have just celebrated our 10th wedding anniversary. Somewhere in all my old files and folders, there’s a degree certificate from the University of Cambridge. And six hours away by road, my sister lives a much calmer, happier life, with 24/7 care from qualified professionals who she has bonded well with, plus three days a week spent with our parents. She now has vanishingly few extreme meltdowns and self-injuries, and she has gained more stability than I would have ever thought possible while we were teenagers, when she was removed from her specialist school for young people with autism because they were unable to meet her needs safely.
This all sounds like the best possible outcome for everyone, and yet my feelings about it remain complicated. Even rationally knowing that I could never have provided the same level of support that my sister gets from a full team of day and night staff, there’s still an enormous amount of guilt involved. It’s hard to avoid the thought that I abandoned her for selfish reasons. Sometimes I don’t feel as though I deserve the life I have now or the support I got from my parents, who sacrificed so much to try and protect me. Encountering other siblings who were fully parentified as children or who face loss, hardship and burnout from their care work leaves me feeling a huge sense of injustice that I, through no merit of my own, escaped this fate. And I mourn the little girl who could say with complete sincerity that she would look after her sister forever.
There’s also more loneliness involved in not being a carer than I sometimes consciously realise. Not only have the circumstances of my life prevented me from having much contact with my sister in adulthood – my husband ended up working in a very niche field that has taken us far away from the place where I grew up, and my parents haven’t wanted to facilitate video calls with my sister because she can’t understand that I won’t always be on the iPad, so I only get to see her a couple of times a year – but I also feel cut off from my parents in some ways too, with there being an enormous part of our shared lives that I’m not fully let into. I know they don’t mean to do this and they’ve always had the absolute best of intentions, but there are times when their attempts to spare me from worries and care burdens can feel a bit like being pushed away or excluded.
Growing up without friends who understood my experiences as a sibling was isolating, but I’ve found it hard to find my place within adult sibling communities too. Not being a carer makes me feel isolated and disconnected from other siblings in forums since many of them write a lot about their experiences of caring; it makes me feel like a bit of an imposter and like I don’t really belong and shouldn’t be entitled to support or community in the same way that sibling carers are. This kind of disconnect somehow feels worse than the disconnect I have with my friends who can’t relate to any of my experiences at all.
What I’ve found that helps with all of this is trying to look at myself from an outside perspective, since the kind of things I sometimes say and think about myself are never things that I would dream of saying or thinking about others. For example, I would never point to another sibling and say that they didn’t deserve the chance to have their own children, or that having a job instead of being a full-time carer makes them selfish, or that they don’t belong in sibling community spaces, or that they’re no longer a true part of their birth family, so I probably shouldn’t be saying those things about myself either. I also try to imagine what I would want for my own child if we had another son or daughter with needs like my sister’s, and my answer looks a lot like what my parents wanted for me, and a lot like what actually manifested. Keeping busy helps, and focusing on all the things I do to support other people helps, but I think what helps most of all is remembering the attitude of my parents, who told me so many times and in so many ways something that is so often difficult for siblings to believe: that my life and my happiness mattered too. That my value as an individual is innate rather than earned through specific care tasks, and that I bring joy to people in other ways.
I may not be a carer for my sibling, but it doesn’t mean that I don’t care. I always have, and I always will.