Case Study 2

Toby’s story

Toby is 22 years old. He is a bright but severely autistic young man with many complex needs including OCD, minimal verbal language and challenging behaviour.

Toby started attending ELHAP when he was 7 and regularly attended our holiday and Saturday play-schemes for the next 11 years. He flourished at ELHAP, enjoying the open space, the chance to build new friendships and the regular outings to local parks, the swimming pool. He won the Jack Petchey Achievement Award and asked to use his prize money towards a trip to Chessington with 7 other service users. His mum still remembers how much he loved the day and how he insisted on going on all the rides.

This happy, confident boy was a far cry from the young man who joined ELHAP’s adult programme – Orchard Project – in the winter of 2015. Like many young people with autism and complex needs, the transition from children’s services to adult services was extremely traumatic. Toby was so anxious about the upcoming change that he had to be taken out of his school two terms before graduation. His family then went through a difficult period of moving him from one service provider to another, desperate to find a programme that he felt comfortable with. Toby’s condition worsened dramatically and he became severely depressed and reclusive. He often refused to get out of bed in the morning or wash and would constantly get locked in repetitive actions, often for hours at a time – a behaviour closely associated with autism and OCD. Things got so difficult that his respite care placement was also withdrawn, leaving Toby and his family feeling stranded.

Exhausted and desperate, Toby’s mum came to ELHAP in December 2015 asking for our support. Toby was still willing to come to ELHAP as it had been a “home from home” for him through his entire childhood. By this stage Toby was old enough for our adult programme. He was initially given a temporary day placement, to give him time to see whether he could adjust. The staff worked patiently with him, initially spending much of their day helping him make the transition from the taxi to the front door and then from the front door into the building. Even lunch could take hours, with him opening and closing his lunch box repetitively and banging his cup on the table. Since Toby has minimal verbal language, staff used symbols to communicate with him so that he could understand what was happening and feel more in control. ELHAP staff also worked closely with Toby’s family, providing emotional and practical support and liaising with social services to ensure that they and Toby were receiving the care they needed.

Gradually, Toby was able to transition into ELHAP’s Orchard Project. Once he was able to overcome his anxiety about moving in and out of ELHAP’s building, he gradually adjusted to spending more time with the other adults on the programme and to taking part in the regular outings into the local community and into Central London. Toby has since made remarkable progress due to the support he has received at ELHAP. He now attends college, but continues to come to ELHAP one day/week.

Here are some reflection’s on ELHAP’s support from Toby’s mother:

“Toby has always felt safe at ELHAP. He has the freedom to do as little or as much as he wants and he is never pressurised to do anything he doesn’t want to do. The staff are patient and they really care. If Toby needs to spend the whole day focusing on getting through the front door then the staff will be there alongside him, supporting him.

It is this patience, care and support that got Toby through his crisis. ELHAP has been there for us as a family since Toby was a young child, and they were there for us at Toby’s lowest point when all other avenues had failed. Even our respite placement turned Toby away!

Without a doubt it is thanks to ELHAP that Toby is now at college and has reclaimed his life. They enabled him to show how bright and capable he really is. I dread to think where we would be without them. Toby would not be attending college and we would be lost.”