By Zoe Thompson, Head of Development and Proprietor 3.6.19
After our eldest child Philip was diagnosed with autism, my late husband Dixon Milburn and I looked at a range of schools to meet his needs. We had started using an autism intervention called ‘Relationship Development Intervention’ (RDI) in the home and it was having a significant impact on our family dynamics and quality of life.
RDI addresses the core difficulties at the heart of autism by helping parents to change their communication and interaction style in order to help their children master the developmental milestones that they missed when the autism got in the way. RDI is one of a small number of interventions that meets all the criteria in NICE guidelines CG170 for approaches that seek to work on core autism difficulties.
To us, Philip’s autism was the biggest obstacle to him engaging positively in learning and in life, as well as the biggest obstacle to him having good mental health, so we wanted his school to be able to work on his core autism difficulties. Our local authority was not able to find a school which would meet these needs and so we decided to set up our own school, in order to embed the principles and practice of RDI within the curriculum.
We opened the school in 2010 in rented premises in Grasscroft with just one pupil, Philip. By 2017 we had 12 pupils, our maximum number. Sadly, Dixon passed away in August 2017 and it was shortly after his death that the school’s former rented premises on Oldham Rd in Grasscroft were put up for sale.
This was a very challenging time for staff and pupils – trying to deal with losing Dixon and then coping with the uncertainty around the school’s future. A press release was issued, asking local people to help us identify suitable premises to move to. A local businessman, Daniel Scott, read the press release and came to visit to see if he could help. His offer surpassed all our expectations – his company, Robert Scott and Sons, offered to build us a purpose built school on some derelict land adjacent to their Greenfield factory.
This incredibly generous gesture was like a dream coming true. We found temporary premises in Greenacres which will house us until the new school is built, hopefully by Easter 2020.
Pupils, staff, building contractors and Daniel Scott at a site visit before demolition of the old building
At 19 years old, Philip has now ‘graduated’ from Bright Futures School. He didn’t want to go to college but did want to continue learning so that he could be work-ready. As a result of being supported with RDI both at home and in the school environment, his ADOS score (which shows the severity of the autism) had reduced from 19 out of 22, to 12 out of 22. He is so much happier, better able to engage with people, more confident in solving problems and managing uncertainty as well as managing his own emotions. However, he recognised that he still needed to keep working on some of his autism-related difficulties – in particular, Philip wanted to work on what he calls his ‘autistic rumination’ which he describes as being bombarded by negative thoughts in a cycle that is extremely difficult to break.
Oldham Council resisted funding an educational package that would allow Philip to work towards his goals, so Philip and I took the Council to a Special Educational Needs (SEN) Tribunal.
In early February 2019, we heard that we had won our case and Philip now has in place a post-19 package of educational activities funded by an education ‘personal budget’ which I manage. The package includes a continuation of the RDI, which has been deemed by the Tribunal to be a crucial part of his educational provision.
This is the first time in the UK that a social communication programme such as RDI that meets NICE guidelines criteria has been recognised by an SEN Tribunal as ‘educational provision’.
Other pupils from BFS have not made the same progress because unless parents are also using RDI in the home, it does not lead to outcomes like those achieved by Philip. Children make progress and then plateau, so we are now helping other parents to see if they can be supported to get RDI home programmes funded via their child’s EHC plan (the statutory document that sets out their needs and what provision is required to meet those needs).
Philip says, ‘Going through the Tribunal process was extremely stressful. I hope I never have to do anything like that again and I resent the Local Authority for putting me through it. However, now that RDI is ‘educational’, my Mum will be able to help other parents who need to be able to do RDI in the home, to try to get this via their children’s Education, Health and Care plans. That wasn’t possible before my case went to Tribunal. I’m very glad to have been able to do something to help other people and that was a big factor in keeping me going through that very dark time. The RDI has made a huge difference to me and is something that I would recommend to anyone else with autism.’
Philip is now writing about his experiences of receiving services as an autistic adult. A blogpost he wrote recently about the forced socialisation of autistic people was published on Special Needs Jungle in April 2019 and he will subsequently be writing about the current work he is doing via RDI to address his autistic rumination.
Philip on the site where the new school will be built