It’s often difficult for people with a disability to lead an ordinary life but it’s often difficult for family members too. Family members may feel that they cannot express their true feelings. Emma, whose story is set out here, bravely sets down her feelings about her brother’s autism. Her story is included here to show just how difficult it can be to live with a severely autistic sibling – and to show that it is OK to express negative feelings. We don’t have to be saints!
I have never accepted my brother’s autism and have found it very difficult to deal with. His name is Daniel, and he has severe autism. I am 18 years old, and he is 16, with the mind of an infant. I shall never hear my brother say my name. He cannot speak, is still in nappies, and has been living in a special care home for four years due to his unmanageable behaviour. Whilst I was growing up, I found life very difficult. I buried my head in class work and focused on getting the best out of life. I am going to university soon and I am immensely proud of what I managed to achieve despite everything that was going on around me
. After my brother was diagnosed with autism at the age of two, my life turned upside down. For the next 10 years, social workers and helpers would constantly be in-and-out of the house, discussing my brother’s needs. Conversations between friends and family would often be related to Daniel, and disability.
I missed out on many normal things in my childhood. My parents tried to make time, but they were often too stressed and preoccupied with managing my brother to listen to my worries. I would often shut myself in my room and cry, while my brother watched ‘Jungle Book’ for the 1000th time, making a big noise downstairs. He would wake up in the middle of the night and kick my bedroom wall, making sleeping a difficult task in my house. Doors, windows and cupboards had to be locked and I couldn’t leave out any toys, school or art work because they would get eaten or ruined.
On a few occasions, my brother managed to escape from the house and ended up on a nearby road. I’ve always thought that he’s like a cat with nine lives. Once, I forgot to shut the front door of the house when I was watering my plant in the front garden and he ended up on a platform of the nearby train station. I hate to imagine the guilt I would have lived with from the age of 10, had anything happened to him
. I wish I could accept his autism, and perhaps I shall in time. I suppose I just need to move on from imagining the ‘what if?’ life I could have had with a normal sibling, a close friend you grow older and shared special occasions with. I have so many memories of my brother running around the house naked before his bath, or running into my room screaming or trying to hit or bite my parents. It felt like he always had an excuse for bad behaviour. On other occasions, he was funny and would just keep himself happy
. I often fear the future. I fear what would happen if my parents died and I’d be his only family left. I fear that my own children which I so long to have in the future, will be severely autistic too. I am sad that he will miss out on life’s beauty, will never have children of his own, and will never be able to live without care.
I wish he could talk to me, and I wish I could be strong enough to visit him once in a while. But I find it so hard to see my teenage brother getting older in appearance but remain the same in mental age. Mum and I have often said how we wish he could stop growing and remain a little child forever. I hope one day I stop feeling jealous of my friends and family with normal siblings. I hope one day my relationship with other members of my family will not be so strained. Although I still get depressed about having an autistic brother, I have definitely learnt to appreciate life. I work hard towards a life I am grateful to have. I am compassionate towards those in need, and don’t worry about trivial things. I am so close to my mum, and I love spending time with her, as well as my cousins when I can see them.
I don’t hate my brother – I hate autism, and what it’s done to my family.
Click here to go to the website of The National Autistic Society for information about autism