Being a sibling can be complicated and challenging. Many siblings grow up not knowing there are other people out there with similar experiences, but it can really help to know that you’re not alone. In this section, adult siblings share their stories of life with their disabled brother or sister.
My sister is 3 years older than me and has William’s syndrome. When I was 14 – 17 years-old, these were some things we would do together. When I was too young to take her out, we spent a lot of time doing activities at home. I always tried to do something that we both … Continued
I am 20 years old and my sister is 2.5 years younger than me, but the developmental age gap is much higher. This is harder to put a number on! She is neurodivergent with a spiky profile, so her developmental age varies on the day and by the task. She also has some minor health … Continued
I am 19 and my brother is three years younger than me and is autistic. Although we have always been very close and probably spend more time together than ‘normal’ siblings, it’s hard to think of concrete ‘things’ that we do together. Conversations and texts A lot of our time together is spent with … Continued
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 … Continued
Five adult siblings tell us about their experiences of genetic screening and genetic counselling. “I’ve had genetic screening and genetic counselling twice, the first time I was 16 to see if I was a carrier for the DMD [Duchenne Muscular Dystrophy] gene. I would want someone to know that there is no shame in wanting … Continued
I listened to the TED Talk – Alicia Maples, Recognising Glass Children. As a ‘glass child’ I found this difficult to listen to but very interesting. So much of what Alicia said made sense to me and it made me very reflective of my own childhood. My childhood was wonderful in so many ways, but … Continued
I’ve recently made some new friends. I want to explain about my brother and how he is severely Autistic and non-verbal. People often hear the Autistic part and don’t really pay attention to the non-verbal part. This can be difficult as it means people make an assumption about what my brother is like. They might assume … Continued
The thing about being a sibling to someone with a lifelong disability is that it is very difficult to know how you feel about it. The depth of emotions are never linear and only as an adult have I realised the significance of what this has meant, how it has shaped me, and how it … Continued
Siblings are typically the most consistent advocate for their disabled brother or sister throughout their lives. Many siblings do advocacy without even realising they’re doing it – whether that is young siblings advocating for their disabled brother/sister to be included in activities as children, or adult siblings pushing service providers to do better. Despite falling … Continued
It is difficult to talk about the realities of being a sibling without feeling I am doing my parents an injustice for the incredible job they did raising us. Ultimately, however, no amount of love can ease the pain of experiencing just how cruel the world has the potential to be that young. … Continued
Would you like to help other siblings by sharing your own story? Please get in touch.