Ayisha's story

My name is Ayisha, I’m 16 and I care for my younger brother Shayaan who is 9 years old and has severe autism. Me and my family didn’t know Shayaan had autism until he was three years old, a family member noticed similarities between Shayaan and her disabled son had (he was making no eye contact, running from people he was unfamiliar with and screaming if he wanted something). After that, my mum spoke to Shayaan’s nursery teacher who had two autistic children herself and said she had noticed this too. After blood tests, Shayaan was diagnosed with severe autism.

It was a shock as there was no family history of autism. Shayaan wasn’t able to speak until he was 4 years old which made it difficult for me and my family to communicate with him as whenever he wanted something he would scream/cry about it. These screams soon led to tantrums which were very difficult to deal with. Thankfully with the support of his special needs school, he started talking and socialising with others which was amazing to see. As a sister seeing him grow was amazing I was with him in his worst and best moments and seeing him in a good place makes me feel like I have achieved everything. I continue to care for him and I always will be there for him as he’s my source of happiness.

What tasks do you do in your caring role and how does this affect your daily life?
I take care of Shayaan by cooking for him and feeding him, I make sure to the house is clean as he dislikes it when it’s messy, I dress and shower Shayaan and he also needs help after doing the toilet and I’m always there to help him. I take Shayaan out for walks sometimes we do shopping and I make sure he’s safe and not in danger. I put Shayaan to sleep which makes me stay up later after putting him to sleep to do homework or revise for school. These caring roles do keep me away from socialising with friends, I don’t have any time to myself and it makes me feel isolated at times. Shayaan does have carers that will take him out for walks occasionally, but usually in this time I clean and make sure his food is ready for him.

Is the Christmas period different for you compared to your friends? If so, in what ways?
Usually at Christmas time my friends are shopping or going to see the Christmas markets, but both my parents are working so I don’t get to. My parents try their best and as a family we will go shopping and see the Christmas lights in Glasgow which are beautiful, Shayaan loves to see them. As me and my family are Muslim we don’t celebrate Christmas but Shayaan loves it as he learns about it in school. He loves singing different carols and opening presents which we try our best to get for him as he loves Christmas. Shayaan’s school has a Christmas fair every year which we attend to support the school, it’s great fun and we enjoy it every year.

What are your hope and aspirations for the future?
I hope to become a lawyer in the future, and be someone Shayaan will look up to. I hope to support other young carers and inspire others with my experience in caring for someone with autism. I aspire to raise awareness in schools about young carers and ensure they receive the support that I don’t get as a high school student. I hope to travel with Shayaan in the future and make sure he has the best childhood that he deserves.

Do you think your caring role will have an impact on your future?
I don’t think my caring role will impact my future as I feel Shayaan will progress really well in the future and won’t be as needing as much help as he does now however I will always be there for Shayaan no matter the situation. I don’t think my caring role will change in any way in the future as me and Shayaan are inseparable and I always want to keep him close. I am planning to do a modern apprenticeship in law, and stay close to my parents and Shayaan and support them in anyway.

Have you been supported by Carers Trust?
I didn’t even identify as a young carer until very recently, so it took me a while to get support. I have received one grant which I am very grateful for, this was spent on things that will give me a break as a young carer which was very helpful.