Being afraid to invite friends round in case they didn’t understand, watching your parents work endlessly to get them the best quality of care, not always being able to help or understand why your sibling was so upset or in pain, these are only a few of the list of problems people with a sibling with autism and their family face every day. For me, my brother has been this sibling for me.
Autism: A mental condition, present from early childhood, characterised by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.
There are a variety of different cases of Autism, they fall on the autism spectrum. At the beginning, you have milder conditions that are considered ‘moderate,’ which are quite common. At the other end, you find conditions that are more severe, where my brother would fall.
I think the hardest part for me has been watching my parents struggle to find day centres or schools for my brother to attend. For the most part, it has been an endless battle to give my brother the best care and support that will help him have the best experiences and opportunities in life. There are times when I’ll come home to find my mum in tears because she’s trying to maintain a care package that she could lose at any time, which is pretty much my brother’s lifeline. Or a carer that my brother has become attached to is leaving. And it’s like a punch in the stomach. I’d constantly ask myself:
What can I do?
How can I help?
But being so young at the time, there was so little I could do other than try my best to comfort my mum and brother.
Another hard part for me is being unable to help or communicate with my brother, as I never really know how he is feeling, and with him being unable to talk, there are little ways for me to understand. I remember when I was about 11, and my mum told me that my brother’s friend had died. His behaviour 6 months prior had become extremely challenging and he had become very distressed, we had no idea why. It wasn’t until a carer who worked at the day centre my brother attended told us what had happened, that his close friend had passed away.
He had been suffering alone for 6 months, and we had no idea why because he physically couldn’t tell us.
The months that followed were extremely hard on my family, but as we were now aware of what was wrong, we could help my brother through his mourning. It wasn’t as if we could sit down over a cuppa and listen to him vent and tell us how he was feeling, or how we could help, it was just being there and letting him know we understood.
But, it’s not all rain. When my brother is in the company of people who truly understand him, like his family or at his day centre, despite his autism, his humour shines through, which we are all so grateful for. My mum always says, “When I see your brother laugh, I know he has value to his life.” That’s always stuck with me and has made me so appreciative of what I have.
Having a brother with autism has taught me so many life lessons. I’m more aware and considering of people with disabilities. I understand the difficulties including discrimination, rejection, and the struggles they face every day to maintain any independence. I know how much harder they have to fight to live a life that we all take for granted, as it’s all we’ve ever known.
If you can relate to this article, I’m so proud of you. You’ll know how difficult it can be, but you also know just how rewarding it can be too. Having a sibling with autism had made be a better person, and I am so thankful for it.