National Autism Awareness Week – Alfie’s journey, from isolation to independent living

National Autism Awareness Week –  Care England member story (Holmleigh)

Alfie comes from a large family, with one older sister, two older brothers and a twin brother. The twins were born non-identical – so Alfie had Downs syndrome and his brother did not. Life was normal and, as you can imagine with such a large family, hectic! When Alfie was about two years old, we noticed that he had an aversion to strip lights in the supermarkets, he liked to play alone, often rocked back and forth and – apart from a couple of words – he stopped talking. Autism was diagnosed.

Anxiety ruled Alfie’s life
Alfie attended the Milestone School and started well but found it increasingly challenging and, towards the end of school life, he was placed in The Space – an extra secure unit. He went to sixth form at Bettridge School but being with pupils who could often be disruptive and noisy meant that severe anxiety set in for Alfie. He didn’t want to go to school and we fought with him every day. Just to get him to get into the car and out the other end took lots of manpower.

In his last few years at home, things got bad. Alfie’s anxiety meant that he had numerous meltdowns daily, often resulting in violence towards family members and himself. We had a lot of professional help and advice, but Alfie was desperately unhappy.
He never went out at all, and it got to the stage where he ate in the dining room with the curtains closed and the door shut. When he finished a meal, his plate and drink would be thrown across the room. Tending to his personal care would also result in damage to the room, to whoever was trying to help him and to himself.

Living in isolation
Alfie’s life revolved around his bedroom and being in the lounge listening to his music, but no one else was allowed into the lounge to sit with him. We had glass panes in the lounge doors and if I wasn’t in sight outside the doors, sat on the bottom step of the stairs, or if I had to go to the toilet – he would begin breaking things, throwing, or harming himself.

Towards the end of Alfie being at home, my days would consist of sitting on the stairs crying for 8 hours or more. I was very close to the edge of a breakdown. Our family as a whole suffered badly. The others feared him and there were no family relationships. Everyone kept to their own rooms. Family life was non-existent.

Eventually, it was decided, before Alfie was 17, to get him into assisted living. We were offered a place at support living flats in Gloucestershire. On moving-in day, our whole family was in pieces. He went to school that morning and never came home. It felt like we had failed in getting our son to adulthood and that we were giving up on him. 

A positive new start
The team sent us photos of when Alfie arrived at his new home. He was lying on his big double bed, (not a closed cot that he had used at home), with a massive smile on his face. A smile we hadn’t seen for a very long time. The days and weeks that followed were amazing. His behaviour changed and at last, when we were all allowed to visit, we were his mum and dad again, and not his carers battling with him.

Alfie has been living in the same place for over three years now. He obviously still has challenges, and a lot of these are caused by frustration, and not being able to communicate verbally, but he has transformed into a funny, caring, loving young man.

Living life well, rebuilding family relationships 
On days when he feels like it, he goes out on picnics and love to go walking. He goes shopping where he chooses and pays for what he wants, and has even been to the local church discos! He loves seeing his neighbouring flatmates and enjoys watching DVDs with some of them (something her never did at home). With support, he does the cleaning, sorts his washing, and helps with meals. Some of his support workers are now like family. They understand him and his needs. We visit twice a week along with other visits from his grandparents and his siblings. We Facetime and we spend time in his garden with him and, when he stands up and wants us to go, we leave. It’s his home and what he says goes!

For anyone wanting to know if assisted living is right for their loved one, obviously, every situation is different but for us, it was the best decision for our son. He has blossomed.