The affect my brother’s autism has had on me. (Living with autism, from a siblings perspective)
My brother was diagnosed with autism when I was 5 years old. I remember the year it happened, it has ingrained into my memory. It was a turbulent year. Both my grandfather and grandmother passed away that same year. Each of my parents lost one of their own, then had to face the agony of being told that their child has autism. It was devastating for us all.
Being 5 years old, the gravity of the situation didn’t really hit me until years later. I have always bottled my own feelings and emotions up, something that has led to many personal and self esteem issues, that have followed me like a shadow into my teenage years. If I am being completely truthful, my brothers autism has had a profound impact on me.
I found it hard growing up. I didn't know anyone else who had a sibling with autism. I had difficulty fitting in at school as I always felt that I was the odd out and struggled with the belief that I wasn’t ‘normal’. I envied my friends who played carefree in the school yard, who went about their day without a shred of doubt or anxiety. I worried constantly throughout my school days. I worried frantically about my parents and my brother. I worried for his wellbeing and about my parents mental health.
The thing people dont understand about living with a child with autism is you can’t just do whatever you want. They always come first. I come second in nearly every aspect of our lives. A painful truth that left me with a lot of issues as a teenager. I never saw how painfully true this was until this past year.
I am 22 years old now and am still shocked when someone puts me first.
It sounds terribly morbid, but it is the honest truth. Living with an autistic child has affected every choice I’ve ever made. Having affected the relationships I’ve formed, parnoid about who I could trust, the friendships I’ve made and even who I form a romantic connection with. A good indicator of having found a good person was always how they treated my brother. It has always been important to me who I’ve let in. If you cant accept my brother then you cannot accept me.
I have witnessed the best and the worst of humanity. My childhood was filled with constant public humiliation, being sneered at and often witnessing my parents being verbally abused by the public.
My brother has incontinence issues, having toilet accidents every day, multiple times a day. I have witnessed sights and been in situations that no sister has any right to see. The line between sister and mother broke years ago, with my brother often calling me both ‘mummy’ and by my name.
I have felt like a mother since the day he was born. I have been worn down by the consitent sacrificing of my own peace and happiness. I have not been able to play music loudly or workout in my own living room because it disrupts his routine. Still to this day I am unable to use the shower when its his turn and I have to wait. Routine is everything in our house and overrides every aspect of all of our lives.
I have never been on a holiday with both my parents. I have craved a sense of sponteniety within our lives for years, we simply cannot have. Everything has to adhere to his schedule. In the name of transparency, I will admit I have resented my brother. I have gone through every emotion a sibling in my position could possibly feel. It has affected the way I view the world and especially the way I view people.
The biggest affect it has had on me, is the desire to have children.
Like a yo-yo, I have gone up and down, up and down, and up and down again, debating if I really want to go through with it. Having my own children comes with inherent risk. The possibility that my children could be autistic is high. Its not a risk I will ever be willing to take. I could never go through living with autism ever again. It has ruined so many aspects of my childhood and is still affecting me way into adulthood. I could not do it again.
I love my brother with all my heart. I have played the role of mother and sister for 20 years. I’ve wiped him after he’s gone to the bathroom, I’ve cut up his food, cleaned him, fed and clothed him, using my own money. I love him as a my brother and also as a son. I cannot deny the impact its had on us all. It has changed us as individuals, mostly for the better. I am definitely more accepting of differences and it has made me more patient. My only hope for anyone who reads this, is that you feel slightly more enlightened, as well as informed. To any fellow siblings, I hope you feel slightly less alone and that there are people who understand.