How the world’s first autism outcomes measurement tool, the Spectrum Star, was created. Sue Hahn reports.
Scarecrow competitions, Women’s Institute meetings and exercise classes. These are the kind of events usually hosted by the village hall in Wyboston, Bedfordshire.
But on one spring afternoon in 2010 the hall held a distinctly different event – the first workshop to develop a tool that could change how autism services are evaluated.
The workshop, attended by about 40 service users and professionals, was one of three that culminated in the launch this year of the Spectrum Star, the first outcomes measurement tool to help assess the progress and changing needs and abilities of people with autism while they are in care.
The Spectrum Star project began because Brookdale Care realised that existing assessment tools for individuals with autism were inadequate for service users within its Milton Park rehabilitation hospital or its residential care and supported living services.
Traditionally, autism professionals have had to use a generic outcome measurement tool designed for people with mental health problems or learning disabilities. But these are inaccurate for people with autistic spectrum conditions. Plus, the Autism Treatment Evaluation Checklist, released in 1999, felt outdated, medicalised and overly concerned with diagnostic categories.
Service commissioners were also emphasising how they needed a specific autism outcome measurement tool to assess how service users they referred to Brookdale were working through their care pathway.
It was time for innovation. And the Brookdale team wanted to lead it.
Journey to change
To assist, Brookdale turned to Triangle Consulting, which produced the respected Outcomes Star. Currently there are 14 Outcomes Stars for supporting and measuring change with individuals with mental health needs, learning disabilities and drug and alcohol addictions.
The Outcomes Star allows service users to work alongside professionals in rating their abilities from one to 10 stages on ‘Journey of Change’ areas.
Either independently, or with a professional, a service user marks each rating point. After all areas have been completed, a line joins all the points, creating a star shape that transforms as a person moves through the ratings points. The Star can also be computer-generated.
The challenge for Triangle and Brookdale was to collaborate with service users to devise a Star appropriate for people with autistic spectrum conditions. The Wyboston village hall workshop was the first event of this challenge.
At the workshop, groups of eight people sat around five tables brainstorming and sharing ideas. The focus was on coming up with Journey of Change areas applicable to people with autistic spectrum conditions. Descriptions of what would be required for people to move from point one to 10 on each area were focused on.
What was vital throughout the research process was reflecting on how service users understood the areas. It was they, after all, who were going to be asked to complete the Star.
Some Journey of Change areas, such as ‘life skills’, came up continuously and many hours were spent revising the language to describe what was required to progress on each area.
For example, a Journey of Change area listed on the first Spectrum Star draft was ‘interests and work’. But it was subsequently agreed this was inappropriate for people not in work. Plus, it was felt that ‘interests’ was also inappropriate for people with autism as it might be seen to legitimise fixed interests and repetitive behaviour that can prevent someone engaging in a meaningful past-time. This was therefore changed to ‘time and activity’.
‘Challenging behaviour’ – with its focus on the negative – was also not chosen as an area, with ‘sensory differences’ and ‘socially responsible behaviour’ included. Learning to be socially responsible conveys a sense of embarking upon a proactive positive pursuit and includes managing impulses, living within the law and maintaining boundaries.
It should be noted that throughout the process many contributors felt wary about trying to mould service users to fit into a non-autistic world.
But it was felt service users had genuine ownership of the Spectrum Star research. They spoke out, challenged, disagreed, and suggested every step of the way.
In the end, nine Journey of Change areas were chosen. These were: physical health; living skills and self-care; wellbeing and self-esteem; sensory differences; communication; social skills; relationships; socially responsible behaviour; time and activities.
The next step was to pilot the Star – and again Brookdale service users played a key role.
The pilot included 92 people, together with a professional. For the pilot, two Star scores per person were received and collated, with three months between each score. Three months was a short period because it is recommended the Star be repeated every six months. But the primary purpose was to understand the mechanism of implementing the Star in practice.
Because it was new to everybody much time was spent discussing and explaining the Star with senior staff. But this was all part of the learning process. Indeed, all feedback was valuable as it enabled the team to examine how the Star was perceived, and what needed to be improved.
One lesson learned was that people took varying times to complete the Star. While one person could complete all the Journey of Change areas in one hour, it might take another with more severe disabilities the same amount of time to complete just one area. But this is the beauty and value of the Spectrum Star. It is person-centred and collaborative, so allows people to move at their own pace, giving them ample time to process, understand, discuss and answer.
Additionally, while the Star can benefit an individual, it can also be used at an organisational level to identify what a provider might be particularly good at – perhaps improving people’s wellbeing and self-esteem – or less good at.
But how reliable and valid is the Spectrum Star? Firstly, it is based on previous Outcomes Star research and implementation. Plus, the descriptions of each stage of each arm are detailed, reflecting the thought that has gone into it. Nevertheless, it will always be important to record who – professional or service user – completes the Star.
For example, one service user insisted on completing the Star on his own and scored himself a 10 on every area. However, it was clear he was not at this stage. But professionals were able to assist him on his insight and help him to know where realistically he was on each area.
But the Spectrum Star feels valid because it allows a shared and accessible language between clients and professionals, and can facilitate on-going discussions around how people are improving or not.
Importantly, the tool can also encourage people to have difficult-to-have conversations, such as addressing inappropriate behaviour.
Because of these factors, it is hoped the Spectrum Star will be widely taken up by services – from hospitals to residential care to schools – around the country and abroad.
Increasingly, commissioners want to see outcomes provided by services, particularly in the present environment of tight NHS budgets and moves towards payment by results. The Spectrum Star can help commissioners evaluate whether or not money is being well spent.
The Star has quickly become ingrained in the provision culture at Milton Park Hospital, and the resource centre has been re-named the ‘Star Centre’ as each activity is designed to support people through their care pathway.
And to think it’s all down to the hard work initiated at a local village hall.
To learn more about the Spectrum Star, and how it can work for your service, you can receive a free organisation and user guide. Call 01480 474747.
About the author
Sue Hahn is deputy manager of Brookdale Care’s Milton Park Hospital, Wyboston, Bedfordshire.
This article first appeared in the Decemer 2012 issue of Learning Disability Today. For information on how to subscribe to the magazine, click here.