Autism Spectrum Social Stories In Schools Trial (ASSSIST)

Plain English Summary

Background and study aims
The concept of social stories was created by Carol Gray in 2000. Simple, short stories, usually with the autistic child in the starring role, often with helpful photographs and illustrations and a theme relating to a particular social difficulty or life-skill problem. They break down the difficulty or problem into easily understood sequential stages, and include a) instructions on what are acceptable and preferred behaviours, and b) in-built demonstrations of what positive consequences might follow if they are enacted in real life. The child reads the story with parent/teacher and, with understanding and repetition, the preferred behaviour may be adopted, a new skill acquired, or even some complex anxieties alleviated. Social stories are already being used extensively in schools, but there has been little research to date on how best to structure and write one and how well they work. The aim of this study is to find out more.

Who can participate?
Children between the ages of 4-15 years diagnosed with ASD and with behavioural problems in school.

What does the study involve?
Stage 1: Developing a review of studies already carried out on social stories. This stage is called a systematic review (of existing evidence).
Stage 2: a) A discussion with children, teachers, and parents on their experiences with social stories, in which situations they have been used, and how successful they have been and in what way. It is hoped that this stage will reveal what the most common problem scenarios experienced by children with ASD are, which types of children benefit most from the stories, and which formats for the story work best.
Stage 2: b) The formation of an expert writing group whose role would be to formulate the ‘ideal’ social story writing toolkit. Initial drafts would be passed between teachers, parents and professionals and refined until they are happy that the writing toolkit is clear, easy to follow and will result in a story which will be as effective as possible. Examples of particular templates for commonly encountered scenarios will be given. It is envisaged that although some of the templates devised as a result of our project might fit large groups of children, they will need to be individualised and bespoke, and clear guidelines will be incorporated as to how to do this. The team involved in developing the toolkit will attend a preliminary workshop led by Carol Gray, the creator of the whole concept. Further training will be carried out in-house by the research team.
Stage 3: We will test whether the toolkit reduces challenging behaviour in a larger study. Before we can do this we need to do a small study (called a feasibility study) to test out the toolkit. Children aged 4-15 with a diagnosis of ASD who exhibit challenging behaviour will be eligible to take part in the study. We will test whether teachers, children and families like to use it, what they find helpful and unhelpful, how to measure changes and we will work out how a bigger study should work.
To do this, we will randomise (a bit like deciding by tossing a coin) some children to receive a social stories intervention with treatment as usual, whilst other children will receive and ordinary story with treatment as usual. Treatment as usual includes any other treatments except Social Stories (for example behavioural approaches, parenting support and social skills training). We will study 50 children in all (25 in each group). After the Social Story intervention, we will interview teachers, parents and children to find out their opinions on the study, such as the ease of use of the tool kit.
We will look at different ways of measuring the children’s behaviour. The systematic review will help us with this. This might include giving parents, teachers and children questionnaires such as the Strengths and Difficulties Questionnaire and the Developmental Behaviour Checklist. We will ask the child, family and teacher to set a clear goal for the Social Story and ask several people to rate it before and after the study.
We will also give parents a General Health Questionnaire before and after the study in order to measure any possible changes in their stress levels. We will also give parents and children questionnaires that ask what they think of the intervention and support received. We will not statistically analyse the differences in scores on any of the questionnaire measures because we will not have enough participants, but we will use them to work out how many children need to be in a larger study. We will look at which measures are the most informative and easy to use for the future large scale study.

What are the possible benefits and risks of participating?
We are mainly interested in finding out whether Social Stories improve children’s behaviour in their mainstream school setting, when targeted at improving social skills and social coping. Parents participating in the control group will be invited to free workshops at the end of the trial. Social Stories is an experimental intervention which is not routinely offered in the NHS.

Where is the study run from?
Participants will be recruited from 14 schools in the York area with the full support of the local authority. The focus groups and qualitative interviews will mainly take place in NHS centres associated with primary care. For example, in York, they will take place at Lime Trees child adolescent family unit.

When is the study starting and how long is it expected to run for?
This is a three year study, starting in October 2011 and finishing in September 2014

Who is funding the study?
NIHR Health Technology Assessment (HTA), UK

Who is the main contact?
Dr Barry Wright
barry.wright@nyypct.nhs.uk

Contact information

Study information

Eligibility

Locations

Countries of recruitment

• England
• United Kingdom

Study participating centre

Sponsor information

Funders

Funder type

Government

Results and Publications

Study outputs

Editorial Notes

20/09/2016: Publication reference added.
22/08/2016: Publication reference added.