Field Lane has opened Stuart’s world

From climbing and running, to horse-riding and festival going, Stuart has his own timetable of activities.

Diagnosed with autism and associated learning difficulties, Field Lane has opened Stuart’s world – an interview with Jill, Stuart’s mum

When was Stuart first diagnosed with autism?

Stuart is a twin and we noticed that when he was about 18 months, he was not making eye contact or responding in the same way as his twin sister. It wasn’t until he was three and half before we got an official diagnosis of autism. We had done our own research, so the diagnosis wasn’t a surprise but having it diagnosed did make life a little easier, being able to explain and seek proper support for Stuart.

What impact did this have on your family life?

We were aware that autism is a lifelong developmental condition, and it was also clear that Stuart had associated learning difficulties. We tried not to let this impact on our family life although it was hard on Stuart's sister. She didn’t always get enough of our time as we had to focus on Stuart's needs. We have been lucky in that Stuart can be relatively adaptable to change so, for example we were able to go away on family holidays, albeit self-catering and supported holidays. Over the years – Stuart is 30 now – we have grown immune to people staring when Stuart would have any form of refusal in public. For example, when he was young it was often difficult to move him away from the video aisle in the supermarket, or when he is chatting away to himself. Nowadays I think people are more understanding and knowledgeable about neurodivergence. There is a growing acceptance of the condition.

How did you adjust / accommodate Stuart’s additional needs?

We did a lot of research at the beginning and came across an early intervention approach based on applied behaviour analysis that seemed positive, so we set up a home programme, with the support of an Applied Behaviour Analysis (ABA) consultant. We then got together with a group of other local parents who were all running home programmes and decided to set up a school. Stuart became one of the first pupils. We were also lucky in finding a couple of wonderful local groups, Disability Challengers and Parkside Mencap, who provided activities for children and young people with disabilities. Having this extra support for Stuart meant that we got time to spend with Stuart's sister. On leaving school Stuart went to a specialist residential college for three years. We knew he needed to develop his independence skills to the best of his abilities – it was all too easy for us to do things for him when he was at home.

How long has Stuart been living with Field Lane?

It was important to us that he didn't lose any of the skills he’d developed after he left college and that he had a peer group around him. We were told about Field Lane that was in the process of setting up the Wood Street project in Surrey. We were really impressed with the project and were keen that Stuart should be supported by Field Lane if a place were to be offered. It took a very determined approach to get this through the Adult Social Care panel in our local authority, and it was only on the day of Stuart's college leaving ball that we knew his place at Field Lane was secured. Stuart moved into Wood Street at the end of August 2016 and, alongside establishing the school, it has been the best decision we could have made for him.

What does he like about living there?

Stuart has his own timetable of activities based around things he enjoys doing – it’s very particular to him. He has a great relationship with his support staff, who are always very willing to get involved with things that we suggest Stuart might like to do. This includes running 5k events, although I think the trips to Crystal Palace where Stuart is a season ticket holder are probably preferred by the support team! The regular photos that we get of Stuart show how much he is enjoying himself.

What difference has this made for you /him?

For us, Field Lane gives peace of mind to know that Stuart is being well cared for and that it is for the long term. We have been able to develop a good relationship with the staff and know that we can contact them about anything and vice versa. For Stuart he has opportunities that we would not be able to provide on a regular basis. We have seen increases in his independence skills over the time he has been at Wood Street. Field Lane has opened Stuart’s world. It feels like home.

What advice would you give to other parents of autistic children?

You know your child best, look for what is out there, what you believe is right for your child and fight your corner. It's not easy but it's worth the short-term pain that is often involved in getting the decision that you want.

What are your hopes for the future for Stuart?

We want Stuart to feel happy and secure. We want him to continue to have a meaningful life, grow his independence skills and to contribute the best he can. We are so pleased to have been introduced to Field Lane. I think it’s unsung – it’s so important to show the huge impact the organisation has on the people it supports and their families. It also has a role in raising awareness of autism, particularly as more people are being diagnosed and there are so many different levels. The tendency is to focus on the less severe end of the spectrum, but it’s much more complex.