From a young age, I almost relished my brother’s autism.
People would say to me: "you're so mature, you cope so well, you're so brave". I thought his autism was a gift for me that would help me develop as a person and it hadn't crossed my mind that his autism would ever become something I was ashamed of. I loved my brother from the bottom of my heart, included him in everything and introduced him to all my friends. I talked about him all the time and spent every waking moment caring for him.
When I was about eight years old, it began to dawn on me that people did not understand my brother’s special needs. Whenever we went out together as a family, and we'd get strange looks, people would give us strange looks, point their finger at us and giggle, sometimes making impressions.
This was when I slowly began to resent my brother. Nonetheless, I couldn’t help protecting him, sticking up for him and even getting into fights with people who make fun of him.
My increasing awareness of people’s misconceptions of autism seriously affected my confidence. I was withdrawn and shy and no longer told people that my brother had autism. I knew they would say things like "spastic", and "retard", which actually physically hurt me.
One weekend I went bowling with my family, and to my horror, a good male friend from my class at school was there too with his family. I was terribly embarrassed and concerned that he would pick up on my brothers’ strange habits and tendencies. When I went to school on Monday I had completely forgotten about it but was welcomed by a class mimicking my brothers OCD-like behaviour, pretending to lick tables and dribbling – this was the first time I'd cried in 6 years (I find it difficult to cry as it distressed my brother, so trained myself not to, even under the most dire circumstances).
Relentless bullying continued until I left for secondary school, where I kept my brothers autism to myself – I wanted to escape from being my brothers sister, I just wanted people to know me. I would come home every day and see my brother’s autism grow worse and I would often sit and wonder ‘why me?’. I wished for a normal family, and thought this was God’s way of punishing me for something I did in a past life.
I had many sleepless nights worrying about what would happen when my parents died. I had an image in my head of me living in a grotty flat, with my only money coming from the government, spoon feeding my brother and dressing him, at the age of 40. It terrified me, and I gradually distanced myself from my brother and the rest of my family. I no longer made an effort at school as I couldn’t see the point of preparing for a working life when I had no life or career ahead of me.
I would consider my brothers’ autism moderately severe. He has difficulty with speech, and only started grasping basic literacy and numeracy at the age of 17. He also suffers severe OCD and anxiety, which often results in him becoming violent. He is physically very able, which can make his violent outbursts quite frightening.
I only told my new friends about my brother’s autism after he had become exceedingly violent which left me emotionally distressed and I had to take a few weeks off school. As soon as I explained my situation to them, they all shared stories with me about their relatives with autism, or their knowledge of it - I instantly knew that I’d finally met a lovely group of people who would fully accept me and my brother, and not treat his autism as a problem, but a way of life.
Since I started regaining my faith in people who were looking at my brother’s autism from a positive and mature perspective, I have only once had another negative experience. My first serious boyfriend spouted some nasty insults about my brother when I broke up with him, but his disgraceful comments were only harmful to himself and made me realise who he really was.
Now, at the age of 16, I still notice the giggling and the comments, but I’ve begun to rebuild my relationship with my brother. We’ve made a new start and I now dedicate a lot of my free time to helping other people with autism by raising money and volunteering for various events. It’s one of the very few things I feel extremely passionate about and openly stand up against anyone who makes remarks about mental health.
I don’t know why or when this change of attitude occurred, it may simply be emotional maturity and the fact that I have realised that others do not necessarily have any knowledge of autism. I can’t expect everyone to know what it means to have autism or live with someone who does in the same way that I do not know about other conditions or illnesses people might have.
Seeing my brother grow up and accepting that he is not going to get better or change, has helped me become a stronger person. I sometimes feel almost indestructible, that I can take on any challenge that comes my way and that’s because of my brother, it has nothing to do with me.
I love him more than anyone in the whole wide world. When I’m not with him I wonder what he’s doing and I love watching him experience new things and grow up, just like any normal boy. He’s the reason I smile when I wake up in the morning.