Autism became mainstream in public discourse and medical diagnosis, resulting in some steps forward in terms of recognition and support. But for many with profound autism along with other disabilities, care provision has not kept up with growing awareness of this condition.
Shaftesbury’s services are bucking this trend and our Northern Ireland supported living services recently won an autism-friendly employer award. Why is this important?
Understanding each person’s likes and dislikes, needs, ability and how they express themselves is central to the way Shaftesbury Northern Ireland’s services provide care for the 32 people they support, many of whom show autistic traits.
Joan has supported two autistic young men, Jamie and Aaron, for six years. She knows their routines well: ‘Every time Jamie goes home to his family, he brings one or two new photos back. He has a photo table in the living room here and he spends a lot of time arranging his photos, then putting them away again and bringing out new ones. He knows exactly what photo he is looking for and he will go through his basket until he finds it. His photos are a really big part of his activity and enjoyment. For him, the visual is of much more importance than for instance, the sensory, which might be vital for another person we support. Jamie is very able, even though he doesn’t have much language and he’s very, very intelligent.’
Why autism-friendly support matters
However, the right care setting for people with autism along with other disabilities can be hard to find in Northern Ireland, and across the UK. Eminent Irish neurologist Dr Suzanne O’Sullivan claims that ‘those with the greatest needs are becoming invisible’* because soaring diagnosis rates for autism mean while there is increasing provision, it is largely for those with milder forms of autism, who can live much more independent lives. Those whose autism means they need a high level of support can be marginalised.
Rising autism referrals
Service delivery lead at Shaftesbury’s Lisburn service Nadine agrees: ‘I think this is quite a new type of service for Northern Ireland and it’s probably not resourced in this country as well as it could be. And at Shaftesbury, we’re getting more referrals for people with autism, especially with complex needs.’
‘My view is that everybody needs a home,’ says Debbie, service delivery lead for Shaftesbury North Down and Ards. ‘Everybody needs support. So if our Health and Social Care Trust comes to me with somebody with brain injury, mental health challenges, physical or learning disability or autism, if we believe we can support them, we’ll do the training and support them.’ Shaftesbury Northern Ireland currently work with 32 people aged from 30s to 70s, in two services, Lisburn and North Down and Ards.
Already experienced in this field, the Northern Ireland services’ excellence was recently enhanced by specialist autism training for the 50-strong staff team. Their professionalism was recognised when they undertook further training and gained an autism-friendly employer award from Autism Northern Ireland.
Autism-friendly employer
Debbie explains: ‘We had to implement change for any staff or people supported who potentially had autism, including those without a formal diagnosis. This included making sure we’re inclusive and that we’re accommodating their needs and making life easier as much as possible. All staff attended the training, then we put plans in place for changes. We provided all the evidence of change and learning to get our award.’
The staff team see autistic support needs in many of the people at the service who may have been ‘diagnosed with a learning disability but that’s where it ended’ says Debbie. ‘No further in-depth assessment was given at the time.’
Specialist autism training for better care
The autism-friendly training has helped staff understand behaviours which people they support sometimes evidence. ‘Imagine your autistic mind being very busy and somebody has asked you something that’s redirected your thoughts,’ says Debbie. ‘We need to allow that extra time for somebody to process. Just because it takes 15 seconds for that person to respond doesn’t mean to say they’ve ignored you or they haven’t heard you.’
Staff have also gained personal insights. Debbie says. ‘We do have staff members that have their own diagnosis and support needs and we’ll give them more time or whatever it takes to support them.’
Sensory tools and support for autistic individuals
The service has developed sensory bags, with tools which can create a calming, enjoyable environment for autistic people. They include sensory toys, story books, weighted blankets and items like a lava lamp. All can be set up in a sensory blackout tent with lighting: ‘Staff say they find these items very beneficial to the people we support, particularly with the people who communicate nonverbally and need that extra guidance and support,’ says Nadine.
Creating calming spaces for autistic people
‘We got everyone together to celebrate Saint Patrick’s Day recently with a barbeque in one of the Shaftesbury houses,’ says Debbie. ‘So we took a couple of the sensory bags and set up the tent and the light. If anyone felt a bit overwhelmed, there was somewhere to go – a quiet place.’
Nadine is proud of what her team has achieved: ‘I think getting the autism-friendly award is a big achievement because it gives evidence that the staff have knowledge and understanding to support people with mild and moderate autism.’
‘Yes, I absolutely do feel proud that we’ve won this award,’ says Joan. ‘And the other thing I’ve found is that when we’re doing handovers or discussing people we support, we’ve each picked up something different from the course. We’re all thinking about ways in which we can make life just that little bit easier for the guys in their day-to-day life.’
*Daily Telegraph, 14.3.25
** House of Commons Library: UK disability statistics: Prevalence and life experiences, Research Briefing PDF