Living with autism Case studies Katy Wilburn and son Sam It was only when a family member who was also a health visitor asked first time mum Katy if she had noticed her two-year-old son did not respond to his name, that she considered something might be different. ‘Sam met all his milestones – he walked and talked on time. I was a first-time mum and you don’t know exactly what to expect but when it was pointed out to me, I did notice. I think what stood out for me was how frightened of other children Sam was.’ Katy took Sam to have his hearing tested which proved to be fine but the doctor wanted to assess him and referred them to speech and language therapy. ‘Sam had lots of language and knew lots of words but he didn’t have any social intent with it,’ Katy explains. ‘Yet still all the way through the diagnostic process which took about a year, I was expecting them to say there was nothing wrong. ‘When he was diagnosed as autistic I was devastated. I didn’t even go to the final session where the diagnosis was made, they just wrote to me. It was a very upsetting time.’ Katy says that even though she has a master’s degree in developmental psychology, and knew about autism in theory, she could not apply the condition to Sam. ‘I could just see the ways in which he didn’t match the profile of being autistic. He is incredibly loving, likes cuddles and talks all the time. I was seeing all the traits which didn’t match with a diagnosis of autism.’ ‘It was when Sam got a little older and started school that I started to recognise more how he was different from the other children and how much he was struggling.’ Katy first came to Daisy Chain to undertake the Early Bird training course and says, ‘The course was incredibly helpful and it was also the first time I met other parents of children with autism which made a huge difference. I started to become more aware of how Sam was different. Parents talk about their children not sleeping or not sleeping through the whole night but Sam really did not sleep other than the odd hour here and there. The fear of other children stood out as well as lining his toys up and he is not just a picky eater, if he is averse to eating something new it will make him physically sick. Also, I began to see how far behind he was compared to other children. ‘I felt as though when Sam was diagnosed I should have done more research into autism but I wasn’t accepting it well at that time, I was in denial.’ At Daisy Chain, Katy learned about PECS – Picture Exchange Communication System and found that despite an initial scepticism, it proved very useful. ‘I realised how much it easier that made communication for Sam. Sharing experiences with other parents and finding out about what is out there and available to help was fantastic. Katy began to bring Sam to the Saturday Activity Day, ‘That proved brilliant for Sam, his confidence really grew. I had struggled taking him to mainstream settings for fear he would not be able to cope and would get upset especially with his fear of other children. I would take him to the park where other children would try to interact with him and he would be terrified and ask to go home. At Daisy Chain, everyone is in the same boat so they understand, they don’t stare when a child is upset or make any comments. If Sam does get upset and can’t cope we can just leave.’ ‘As he has got older, it is easier Sam attends an after-school social club where he is now making friends and he loves the holiday activity sessions. He has just started the additional outdoor activity session and he is really liking that, he feels grown up joining in sessions with older kids.’ Sam really struggled in his educational setting. He did have a one-to-one support worker who was brilliant with him but Katy says it was not full-time and it wasn’t enough. ‘When he wasn’t being helped with his one-to-one he would just regress into his own head and I was very worried about him. School admitted they were struggling to meet his needs and recommended a specialist setting. ‘I wanted him to stay in mainstream but I visited the specialist school and was blown away by the facilities, the teaching and the support he would get. He is now in year six and very settled. ‘Going to Daisy Chain is a great help for Sam as it builds his confidence in all areas of his life. He is very comfortable in the Daisy Chain environment and it is easy to get him to come along. To attempt going into mainstream environments still take a lot of preparation as Sam is anxious and nervous. Sam understands there is no pressure at Daisy Chain so it gives him more independence and it gives me a bit more worry-free time to myself. Working full-time from home as a researcher, Katy finds free time hard to find. ‘Sam still finds it hard to be looked after by anyone other than family so that means my mum and dad. It means it’s mostly just the two of us and that can be very intense. ‘I don’t know what we would do without Daisy Chain and the whole Daisy Chain community. I like to celebrate Sam’s successes and only the community who understands autism understands what I mean. Sam recently ate a proper sandwich for the first time which was a massive thing for both of us, I can share that with other Daisy Chain parents as they would be excited for us. I couldn’t share that with other friends as they wouldn’t understand what a major achievement it was for us – what I would often get back is sympathy. I find you need the Daisy Chain family to be able to celebrate those successes with, it might only seem like a little progress but they understand how much it means.’ And to show her appreciation, Katy has signed up to run the 2019 Great North Run for Daisy Chain.