Mel Cruddis is services manager at Meadow View in the north east. Here, she explains how her team uses person centred techniques to best support Jacob, a young man with severe autism.

I remember the first time I met Jacob like it was yesterday. Meeting Jacob is an experience few people forget for all the right reasons. He is very endearing; his personality shines through and I’ve never known anyone to meet Jacob who was not instantly taken with him.

Jacob is a 22-year-old man who has been diagnosed with autism, a learning disability, epilepsy, and brain damage as a result of childhood encephalitis. His epilepsy is complex in that he can experience different types of seizures at any time – and often several seizures in a day – to which there is no discernible pattern.

United Response have been supporting Jacob for just over three years. When I first met Jacob, his life was very different from how it is now. This was mainly due to the challenging behaviours he was presenting at the time and his epilepsy, which made staff fearful for him as they never knew when he was going to have a seizure. Back then, the staff working with Jacob were very risk-averse and inexperienced when it came to managing autistic behaviours. Their intentions were good as they were making decisions that kept Jacob safe, but these resulted in him being ‘wrapped in cotton wool’ rather than being afforded a meaningful life.

United Response’s new approach

When I took over the service in September 2012, one of the first things I did was make a list of all the ways we could better support Jacob. The most crucial was getting additional staffing in place, so we secured two staff to support him along with a sleep-in staff.

Next, we accessed NHS continuing healthcare to fund adaptations to Jacob’s home, including equipment such as a new bed and CCTV monitoring to safeguard him from the risks posed by his epilepsy during the night. Consultations with speech and language therapy, the behavioural assessment treatment service, occupational health and United Response’s practice development manager John Ockenden provided guidance on communication methods, person centred approaches, and invaluable tools – such as positive behaviour support, engagement techniques and active support – that have helped us to support Jacob more effectively. This didn’t happen overnight, however; we had to be consistent.

Easing Jacob’s anxieties

Jacob’s autism means he is unable to predict what is going to happen next, which leads to a constant state of anxiety that – if left unchecked – then presents itself through behaviours that challenge. Jacob is unable to tell us when he is feeling frightened, anxious or poorly, experiences the onset of an epileptic seizure or is confused about what is happening.

As a team, it was our job to find ways of lowering his anxieties through structure, routine and giving Jacob as much predictability as we could. We did this by using timelines, now and then cards, countdowns to indicate when activities would end, and changing the way we communicated with Jacob verbally (i.e. using slower, shorter sentences including key words and giving him adequate time to absorb what we were saying).

You can see some of these techniques in action in this short video clip of Jacob being supported to hoover by my colleague Silma Graham:

As a result of the consistency of the team’s approach, within a few months we began to see a big reduction in Jacob’s challenging behaviours.

Enabling independence

When I first began supporting Jacob, he always travelled in a wheelchair when he went outside – even though he was capable of walking. This was again due to fears of him running away and having no sense of danger.

To get Jacob used to being without a wheelchair, we started by taking him to safe outdoor environments, like a field or the beach, where he could run around without the risk of harming himself. It seemed that, because Jacob hadn’t had the freedom to walk or run before, this was why he’d dash off whenever the opportunity arose!

Giving Jacob the opportunity to be more independent, while managing the risks, has enabled him to no longer use his wheelchair when out and about in the community. He walks independently everywhere now and, thanks to the dedication and consistent approach of his staff, can use a Pelican crossing safely with support. The principle of little and often with active support has been key to increasing Jacob’s participation in activities.

Jacob will continue to present challenging behaviours – of that we can be sure; he certainly keeps us on our toes! – but I believe that so long as we consistently provide person centred support, these behaviours will continue to reduce over time.

Making a difference

Every day that we support Jacob is different and we never know what to expect. The difference now, however, is that through positively engaging with Jacob in a meaningful way – by involving him in activities, giving him structure and routine, and providing continuity so we can get to know Jacob well and better understand him – he now has increased communication and social skills, is more independent, can make choices (and ask for things he wants), and has more control over his life. And, most importantly, he is happier in himself.

One of the highlights of my job role is seeing the huge difference a good-quality person centred service can truly make to a person’s life, and how a person we support like Jacob can bloom when they have genuinely compassionate staff supporting them. I feel very proud of all the staff who have contributed to making a difference in Jacob’s life.

I hope that United Response will continue to work with Jacob in the future and that our support will grow with him as he grows, enabling him to achieve even greater independence in the community and fuller control of his life.

Mel was talking to Laura Cook, web and digital communications assistant.

Learn more about how we support people with autism.