My brother Mike and I were born in the late 1960s. In our early years, we were very close as we were near in age. We grew up with an extended family of grandparents, aunts and uncles. We used to mimic TV programs of the time like Bonanza, we painted each other’s faces, we were typical little children, playing with the clothes horse and pretending it was a tent. We were always in each other’s company. I remember really happy times.
Getting towards our teens was difficult. Autism wasn’t easily recognised back then and Mike got a late diagnosis in his 30s. He’d managed a short amount of time in what is now called reception class but when his differing needs became apparent he was moved to a special needs school where he was diagnosed with a borderline learning disability.
My autistic brother was aggressive and violent
Things at home were brushed under the carpet. Mike would break windows, abscond, run away, lash out at us. He was aggressive and violent. Sometimes, I’d sit too close and once he hit me with a metal toy cutting my head open. Another time he threw a toy at me cutting a gash underneath my eye.
As we got older I had to have a lock on my bedroom door because he would come into the room and wreck it. There was a sense of shame around his behaviour. I generally wouldn’t admit I had a brother at school because no one else had a brother like him. If the topic came up I felt I had to avoid it which felt painful. I wanted to be ‘normal.’ I just wanted to be like everyone else. One of my friends, Susan, had two adopted brothers who had Down Syndrome. I used to go round to her house and we’d listen to music and dance. It was good to know someone who had a different life.
We had no help outside our family circle so we just coped the best we could. The shame felt too great. It just wasn’t something you talked about. Now I know his distressing behaviour was due to his autism, sensory processing disorder and the environment in which he found himself in.
He had no idea of danger
Our family broke down in the early 80s. Mum had been a victim of domestic violence, which I didn’t find out until my 30s – it was all kept from us. My parents divorced in our teenage years and Mike’s behaviour became erratic. He’d run away and we’d find him at the neighbour’s having a cup of tea. He just had no idea of danger.
In the mid-1980s we had some input from Social Services. They provided us with a telephone and a washing machine, which we hadn’t had before. They also put up a six-foot wooden fence in the back garden, as the rented property had low Victorian walls and Mike would jump over them.
It was difficult to manage his behaviour at home – but it was just so empty when he left
When Mike hit his teenage years the change in his behaviour was phenomenal. His behaviour became destructive. Partly, I expect, due to hormones, parents divorcing and the effects of a trauma. Mum and I started having respite care with Mike staying at a local unit at the weekends. It gave us a much-needed break. We used to go with him to settle him. It was always upsetting leaving him there.
In his mid-teens he went to a residential school over 70 miles away because we could not cope during term time. There then came a point when mum had to say that he couldn’t come home outside of term time. We just couldn’t cope with him at home anymore. It was a relief when he went and it was also incredibly sad. I just cried and cried. It was difficult to manage his behaviour at home – but it was just so empty when he left. I’d lost my brother. We didn’t know what to do with ourselves without him. I became a bit of a counsellor to my mum.
Visiting my brother at residential school
We visited Mike when we could, but then he had to move schools. He was placed in a school in North Wales which was over 170 miles away and we could only see him when the social worker drove us up there which was about twice a year. Mike was distraught. He lost his whole family – me, Mum, Dad, our grandparents, extended family, everyone. We used to phone weekly but that became distressing for him. We sent him gifts regularly.
I became more involved with my brother’s care
Over the next 3 decades, Mike was moved several times. There was no provision ‘in county’ for him. I started going to his reviews when I was about 15 or 16. I’d sit in meetings and listen to what was being said. I did that for a few years and then I kind of fell off the scene. I had to go to uni. I took a ten-year break but I was always getting reports. I felt guilty but it was such a relief. My dad stepped in at this point with visits. My aunt and uncle visited once. My paternal grandparents visited once and my maternal grandmother never saw him again. It was heartbreaking for her as she was so attached to him.
Mum had had a nervous breakdown after the incidence of domestic violence and couldn’t be involved anymore as it was just too stressful. Dad oversaw Mike’s care, going to reviews with the social worker and visiting him in-between. I oversaw reports that came in and Dad was the main person, but he began to find this too much. The units where Mike lived were quite depressing so he stopped visiting altogether, which really upset me. So I started taking it over. Dad has since passed away and I haven’t seen Mum in a long time – things are very strained between us.
I’m really passionate about getting my brother’s care right
Mike and I had a good relationship to start with but we don’t have that now because it wasn’t able to be nurtured. When I visited Mike recently he hit me and he hasn’t done that since I was a child. It was quite a shock but I later realised that his behaviour is because he is distressed by the poor environmental conditions of his flat.
I’m really passionate about his care and getting the right thing. His care providers tend to jump to the most restrictive solution to any issues. And they let things slide. It’s me who is fighting his corner and trying to get a better life for him. There is no one else. No one else will care as I will. I worry about people abusing him because he can’t self-report.
It’s exhausting. For staff – it’s a job. For me – he’s my brother. The quality of his care worries me all the time. I never fully switch off, and I don’t think people realise that. I wish I could just step away from it all. But you just learn to manage it and live with it.
I feel guilty about having my own life
When I’m enjoying myself, I feel sad, because Mike isn’t able to enjoy the same freedom. He’s entitled to a good life, and he doesn’t have it. It’s difficult because I try my hardest and I still can’t get the best for him. It’s difficult winding down from that injustice.
Something what really helps me is my faith. Prayer helps. I also find I’ve got to let it go sometimes, accept the things I can’t change and keep fighting for the things I can. I have to tell myself he’s OK in a general sense.
I find I’ve got to take time out for myself too. I have to say to myself ‘stop’ take a step back and say “Actually, I’m not going to check those emails now, I’m going to have half an hour and go and have a bath”.
I can dwell on it and I can ruminate, and it’s not good. I have to focus on the positives too – I know three support workers who would say “I’d do anything for Mike”. And that’s wonderful.
All names have been changed.