Pointers to a good transition: A story for families of autistic young adults

By Edward’s support team and family

Introducing Edward

For 23-year old Edward, transition from children’s to adult services was spontaneous rather than the result of a long term plan.

Edward was at a residential college for children with special needs through his teens, but returned to living with his parents after college. A social worker recognised that Dimensions could meet his needs. Eight months of intensive planning followed Edward’s referral to us and ten months into his support – in his own flat – the choice and control Edward exerts over his life continue to grow.

Edward’s sensory sensitivities are managed through ear defenders, sunglasses etc. But his autism manifests in many other ways. He uses echolalia – he ‘borrows’ speech – typically from films and books – in order to communicate.

He is very sociable and capable but displays a high degree of demand avoidance. He has moments of lucid conversation but only very brief attention spans. When he gets anxious, he asks about people from the distant past. And when he feels unable to express himself, he may break things in frustration. All in all, it takes great skill as well as patience to communicate effectively with Edward, to encourage him to unlock his abilities rather than resting on his disabilities.

What is Transition?

Sandra, Edward’s Locality Manager

It is the move from children’s to adult services, often from a family home or residential college into a home of their own. Ultimately it is about autistic people taking control over their own lives, about making choices that may be unwise, about living as independently as possible, living ordinary, messy lives in the same communities as everyone else.

It is a huge, stressful step. The associated anxiety can easily result in challenging behaviour and create a vicious circle. After all, most children don’t have to do all their growing up overnight! So it’s the responsibility of everybody – family, college, adult and young person’s support teams, housing and support provider – to work together to make change gradual, not abrupt.

How did you plan for Edward’s transition?

Eva & Andy Edwards

We were put in touch with a few other families by Edward’s social worker and the staff at Edward’s old school. Principally, those whose children had been through transition a year or two previously. They were knowledgeable in recommending providers and helping us understand the process and procedures involved – from power of attorney to needs assessments.

Although we attended transition fairs organised by Edward’s college, for us these were less helpful. It was difficult for us to distinguish the differences between providers there. And there’s so many subtly different models of support to be considered. We feel that college didn’t really prepare Edward or us for his transition – that is something I’d like to see improvement for the future.

With Ed’s social worker’s help we concluded that supported living was the optimum type of support for Ed. We had spoken to a few providers and visited a few places in the vicinity of our home (and some we knew by their reputation amongst other families)

What were your priorities for Edward through Transition?

Sandra

The priorities are getting the right home and support team. We secured transition funding from the local authority which was vital; it provided for behaviour support input – in the shape of a Functional Behaviour Analysis – to help us all understand the roots of his challenging behaviour, and to plan in light of this. It meant we could recruit his staff team well in advance and create a ‘Getting To Know You’ period with staff spending time with Edward in the family home, which we know substantially reduces the chance of service failure. It meant there was time for both Edward and his family to view his flat and the local area and put some thought into whether it is the right environment and location for him.

The last thing we wanted was to be locking food cupboards following best interests meetings. So a great deal of time has been spent in actively supporting Edward to build his independence and ability to make good choices around food.

At home, mum does all this. That’s great, but it does mean that after holidays with his family, we need to work extra hard with Edward to help him regain the independence he now achieves in his own home.

Nigel, support worker

Edward’s transition is about taking small steps towards a range of goals. Edward will say no,no,no to pretty much everything. His default position is to let others do things for him. But we question and seek to understand why he is saying no; is it control? Is it inertia? Is it fear? By gradually removing the reasons for the ‘no’ and taking tiny developmental steps we’ve been able to get Edward to shop and cook semi-independently, to enjoy water-based activities and much more; indeed, his day is filled with things that would have been considered unfeasible not so long ago. That is not to say he is always filled with enthusiasm for household chores – nor am I – this is all part of living an ordinary life!

Consistency is key. As a support team, we make sure our communication is really robust, so that colleagues coming on shift hold the same priorities and give the same messages as those finishing.  There’s no cracks in our approach. Detailed handover communications, active whatsapp groups, regular team meetings and a range of other approaches help us achieve consistency.

Andy

It’s all about getting the right staff at the end of the day. Staff who are going to get on well with Edward and support as well as motivate him to try new things. As parents, we did get involved in some of the interviewing for new staff. That was helpful. It was easy to rule some out but of course we’re also mindful that it is hard to recruit social care staff these days so we were careful not to be too difficult. We didn’t want to not have enough staff. I’m happy to say that Ed has some fantastic staff – some of whom can get him to do and try things that we as his family cannot! We believe that staff with the right personality and initiative could be better suited for Ed than some with lots of experience and qualifications.

What would you say to parents whose child is entering their teens?

Sandra

I would say that by the time your child is 14 or 15 you should have contacted both your child’s college and your local authority to get an idea of the adult support options in your local area and to start the planning process. Not all local authorities are proactive; we all know how stretched they are and it is a sad fact that the families who get the best support for their loved ones are usually those that assert themselves – constructively and collaboratively – the best. Listen to the adult social care professionals in your area, develop a vision for the adult support you eventually want for your child, and take the lead.

Nigel

I’d agree with that. I’ve seen people having very different transition experiences, but a common factor in good transitions is early involvement from a clear-minded family. Parents’ priorities, preferences and approach to partnership working are some of the ingredients that can really make that difference.

For me personally, it is nice when a family asks the support team for advice and listens to our thoughts. That’s the point where we’ve ‘earned our stripes’ – we’ve built a trusting, robust partnership. Just as in any relationship, it doesn’t happen overnight and it takes work.

Andy

Talk and learn from other families who have had similar experience, visit lots of different services, get involved as much as you can in recruitment for the right staff and prepare an activity curriculum.

What research should I do into transition planning?

Sandra

Adult social care does not often get a good press – good news stories don’t sell newspapers – but there are a lot of very high quality providers out there. Find out who is commissioned to provide support in your local area, and who else is around. Find out what constitutes good support – if terms like active support, positive behaviour support, person-centred practice, quality checkers, just enough support and choice & control aren’t yet part of your vocabulary, they should be.

Dimensions has a free guide to Transition which you can download here.

Nigel

Learn to identify good support providers. For example, a good one will work in partnership with families. That means seeking and acting on family advice, but it also means questioning, challenging and just occasionally, having considered all the angles, acting in a person’s best interests against a family’s preference.

You can begin to get a feel for a provider through some research. For example, find out how easy it is to get involved in the recruitment and performance management of your loved one’s support team. Find out if the provider has a ‘family charter’ or similar document, whether it employs ‘family consultants’ to advocate for families and how it handles complaints.

Lastly, be aware that many colleges are part of adult care groups; whilst I am absolutely not saying that this arrangement is to create a pipeline of ‘business,’ if your child’s college is in this position you should check that you are being offered real choices at every point.

What is in store for Edward?

Sandra

You’d be better asking him that! But in general I would say that we don’t yet know if his flat is his forever home or a stepping stone to something else. He is so much more independent around food and we want to extend this independence to other aspects of daily life; travelling, cleaning, managing his own diary, etc.

Nigel

More self reliance, managing his life with less prompting and on his own terms. It is also a particular goal to build Edward’s social network beyond family and paid staff; our first tiny step in this direction is to get him involved in activities of his choice alongside other people we support. The future is bright!

Andy

A happy and fulfilling life!