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Rosie – “The ideas that many people have of what a twin relationship should be can place a lot of pressure on the relationship”

From the ages of 1-6 years old, me & my twin brother were very close. Our sibling relationship began to decline rapidly when he started experiencing autistic meltdowns and this impacted our relationship heavily. At the time, I was still young and unable to understand what autism was, with adults around me too weary to explain what was going on (including my parents). Due to not having an understanding of autism, there was a lot of built-up resentment towards my brother and also my parents. I felt that a lot of my childhood revolved around him and his needs.

Not knowing anyone else in the same situation as me throughout childhood was pretty difficult too. I often felt very lonely, as my brother was unable to join in and play with toys, games or other children in the way a neurotypical child would, which resulted in school and nursery being my main opportunity to interact with other children outside the home. My school years were particularly difficult, as I was also often asked questions about my brother and our twin relationship, sometimes also by adults. Particularly the recurring question “How come you’re normal and he isn’t?” that I was unable to answer for many years.

Playing outside with peers was a struggle. My brother was often targeted and made fun of and I spent a lot of my formative years picking fights with people or getting into arguments, due to trying to defend him. It was exhausting at times. Home life was quite difficult, particularly when I had come to a realisation that none of my peers had an autistic twin. They were not experiencing certain things in the home, like meltdowns with screaming and crying for long periods of time, or having their belongings being broken or ruined, or not being able to have any privacy. I used to separate my home and school life and a lot of my peers did not know what I was going through. I was also unable to communicate how I felt to my parents, as they felt that I was being selfish and didn’t have any sympathy towards my brother’s disability.

This is something that I kept to myself for most of my life, as I assumed that no one would understand my situation. I spent a lot of time grieving the idea of how things could have been, particularly when I saw my peers going on holidays with their siblings, playing together, going out to dinner together, matching their clothes and having good sibling relationships. This would sometimes make me resentful towards my peers, as they would often say to me that I was so lucky to have a twin. They did not understand that our twin relationship was very different from other sibling dynamics. Meeting other twins was also something that was quite difficult, as I would find myself having to explain that my twin is disabled and that our twin experience is slightly different. I have always wanted to be recognised as an individual and I feel that I had to go out of my way to let it be known to people that aside from being a twin, I am also my own person with my own thoughts, feelings and career prospects.

The word ‘twin’ generally brings key buzzwords to mind. Most people may associate the word ‘twin’ with the words ‘inseparable’, ‘identical’ and ‘double trouble’. The societal views of twins – the ideas that many people have of what a twin relationship should be – can place a lot of pressure on the relationship, as some people begin to regard both individuals as one person. This can become problematic when there are expectations concerning both of your lives as one, as opposed to each individual’s thoughts, feelings and personalities being taken into account as separate people. Balancing societal pressures of what twin relationships should be like, whilst trying to develop your own identity and find yourself outside of being a twin, can be a very difficult process to navigate throughout early childhood, adolescence and adulthood.

Aside from societal pressures, I found that it was difficult to try and establish shared hobbies and interests due to us being different genders. I also noticed that a lot of people would point out differences between me and my brother, which is something that I experienced a lot as a twin. I often feel criticised, watched or questioned regarding certain things, particularly if I do not share the same views or opinions as my twin. Other siblings may experience the same, but on a lesser scale than twins.

Growing up, I had never met anyone else going through the same situation as me, so it was quite difficult to navigate, particularly in my teenage years. In the early to mid-2000’s, there were no sibling networks or groups that I was aware of to be able to talk to anybody about how I was feeling as a twin to a disabled sibling, so a lot of my formative years were spent not knowing how to express myself. This resulted in me often feeling angry and resentful, but not understanding the true root of it. When living with a disabled brother or sister, a lot of sibling’s thoughts and opinions can get pushed aside and not taken into consideration. This can result in a lot of siblings feeling isolated or afraid to speak, as they feel that they might not be listened to. As a twin to a disabled brother, I just wanted my experiences to be heard, as I felt that I was very mis-understood growing up. People often had thoughts and opinions about me, with no context regarding my circumstances. There needs to be more support groups tailored to young siblings, to allow them a space to be heard. They need the ability to express themselves and unpack certain traumas, without feeling shamed or made to feel guilty when being honest about feelings and experiences. Having the right form of support can empower siblings to feel seen and heard, as siblings of disabled people are also heavily underrepresented in research.

Some advice I would give to other siblings that are twins, is that being a twin does not define your whole existence. Everyone has the right to have their own thoughts, feelings and opinions and have a life outside of their twin. Another piece of advice I would give, would be for twins to also recognise and understand that not every twin is going to have shared experiences or shared dynamics. Some twins may have close relationships, but it is ok to also understand that some twins may not have as close of a relationship, due to certain determining factors in their lives. Being a twin is a blessing and it is important to also build healthy relationships outside of your twin relationship, to allow character growth. I would also encourage more twins to speak up about their experiences, which could contribute to more representation in mainstream media concerning being a sibling to a disabled twin.

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