We always accepted Cameron for who he was
Cameron, who has autism, was the first person to be supported by Autism Jersey 24 hours a day
For Linda Scott, it was pretty clear that there was something different about her son. She had twin boys and while one progressed normally, the other did not.
Cameron was just two years old when he was diagnosed with autism, in 1999. He is non-verbal, has considerable sensory issues and severe learning difficulties.
‘In a way we were quite lucky because Cameron was diagnosed so early. We didn’t have the rigmarole of “is he or isn’t he?”. I can remember reading a book about autism and I could see him lying on the floor, looking at the wheels of a toy truck and I thought, yes, he has autism. When it was confirmed, I was upset, of course I was. Someone said it’s like a bereavement and I did feel like that.
‘He does weird and wonderful things sometimes but it’s just part of who he is. We always accepted Cameron for who he was and having autism doesn’t have to be a negative thing. It can be tough but there are plenty of positives too.’
Linda admits that being the mother of a severely autistic child was something that she had to come to terms with.
As a young adult Cameron can prepare food and go to the toilet independently, and he can wash and dress himself. But it was his sensory issues that got worse when he hit puberty.
‘Even in the house we could no longer speak to each other – the noise of us speaking would raise his anxiety levels,’ Linda says. ‘Even my breathing could be too loud for him. Anxiety would make him distressed and unpredictable.’
Linda explains how she coped as a young mother. ‘For me, the key was having a lot of friends who also had children with autism. That always helps because you don’t feel odd. You’ve all got children who are running around doing weird and wonderful things.
‘I felt I was in the right position to know about things and it gives you other contacts. In the early days sometimes it’s just a case of getting through each day. It’s also about being kind to yourself because people put a lot of pressure on themselves.
‘When I used to go to meetings, I would expect all the answers, and then you realise that actually professionals and carers don’t necessarily have the answer and they can’t wave a magic wand to take it away.’
Cameron went to Mont à l’Abbé School, where he had a very individualised programme and a two-to-one staff ratio. Linda has nothing but praise for how Autism Jersey and the school worked on the transition out of school to his new home environment.
‘Everyone just focused on what was best for Cameron, which is how it should be. It was a good example of a proper transition, based on what he needed.’
The one thing that Linda wishes was different was people’s understanding.
‘As autistic children get older it’s a matter of always having to keep an eye on them, they get to teenage and you’re still making sure they’re safe. Cameron has very little concept of danger. Making sure he is always in sight is not something most parents with teenagers would do.
‘The flapping never bothered me. He’d look absolutely fine and then suddenly started making noises and you would see people looking.
‘You just become quite accepting of it. My way of dealing with it was thinking as long as he’s ok, I’m ok. I don’t care what anyone else thinks. But that does take a while to get to that stage.’
The key is the understanding of staff who have to react to his needs on a daily basis
Cameron now lives in a bungalow in the west of the Island, with the full-time care of two Autism Jersey staff. He enjoys listening to music, doing jigsaw puzzles, and going out for walks – though he can be terrified of dogs. And he will walk and play football with his brother.
‘He’s a happy young man but if something triggers him and the anxiety goes up, it all changes,’ Linda says. ‘The current staff are very good at seeing if he is not in a good place.
‘The key to making Cameron’s life comfortable is the understanding of staff who have to react to his needs on a daily basis.
‘Anxiety can hinder him and can be very debilitating. His communication shuts down and aggressive behaviours will increase. He can become obsessive.
‘Cameron has been a lot more relaxed, and he’s accessing more in the community, like Wetwheels and Durrell,’ Linda says, ‘and he’s a lot more independent within his home environment.
‘You can’t believe how grateful I am. Now, Cameron is well looked after. I put my trust into the people looking after him. It’s definitely the best we could have at the moment.
‘He is settled and happy and that’s what matters.’
*If you are inspired by Cameron’s story, please support us so that we can continue to support adults and children on the autism spectrum.