Tarleton, B. and Macaulay, F.,

2001,

Reviewed by Val Williams, Noray Fry Research Centre, University of Bristol

Methodology

This report is about the findings of a comprehensive research study, investigating the single issue of short breaks for children and young people with autistic spectrum disorders (ASD). It is known that they have problems receiving short break services of any kind. The study is included here because it illustrates a very effective and economical type of user involvement, in which people with ASD were included as consultants to the project.

The investigation had first to deal with the issue of whether such a service is possible and valuable for people with autism, given their known dislike of change and disruption. The lack of services may be due to that single factor. The researchers therefore set out to deal with this fundamental question by involving two adults with autistic spectrum disorders (ASD) and a 'pub group' of young people with Asperger's Syndrome. All these people provided consultancy for the research.

Although these people were not involved in 'doing' the research, there is a clear demonstration in the report of how their views and experience guided some aspects of the study, and validated others. The 6 consultants to this project were more than simply respondents, in the traditional sense.

The main study on which the report is based included traditional methodologies such as:

• a questionnaire to families (N=271 returns)
• a questionnaire to service providers (N=371 returns)
• a qualitative phase, with six focus groups of parents.

The views of the 6 consultants were used to guide the content of these investigations, and the report clearly demonstrates how useful a method this was.

Critical appraisal

Consulting services users during research projects can amount to little more than rubber-stamping the direction and findings of the study. 'Better for the Break?' however provides a good example of meaningful involvement. Given the prima facie difficulties of engaging with people with ASD, this study must be commended for finding routes that worked.

One important strategy was the choice of:

• Two consultants who had a good deal of experience in expressing their views.
• A group of young people who already had a shared social routine (the pub group).

Thus the difficulties due to lack of familiarity with each other, or with the issues, are not apparent. Further, the main researcher spent time with the group of young people, simply as a friend and supporter, in order to develop relationships and trust.

The consultants' views are given on a range of matters. They give evidence about their own perspective on short breaks, on change and on new experience – evidence that no-one else can give for them. There is added value in including their own words, which give vivid descriptions of how the world must seem to someone with autism.

The sessions with the pub group were conducted in an open-ended way, in which everyone shared responsibility for the direction of the talk. The report makes this clear by citing extracts that include the researcher's comments.

Most importantly, the added value of consulting is demonstrated by highlighting themes which the consultants raised. An example is their idea of providing a short break based on the specific interest of the child. This theme is taken up by the researchers, and pursued further in interviews and questions to parents and carers.

Key findings

• Short breaks are beneficial for children with ASD – if provided appropriately.
• They are also extremely useful for families of these children, who are under a great deal of stress.
• Service providers and supporters need training in the specific needs of children with ASD.
• Services need substantially increased funding in order to ensure that the needs of these children and young people are met.
• Children with Asperger's syndrome should also be able to access short break services. Often this does not happen, because they are not considered to have a 'learning disability'.

Social work practice implications

This study provides a wealth of practical information and guidance for social services practitioners and others involved with families of children with ASD. Understanding autistic spectrum disorders is seen as a key to providing appropriate services, and the views and insights of the consultants to the project are very valuable in shaping this understanding.

When services have a detailed understanding of ASD, they recognise the importance of:

• Acceptance of the child or young person.
• Matching with supporters who have similar interests.
• Preparing children for their short break very thoroughly, with introductions and visits. Thorough planning can reduce anxiety.
• Children need to feel safe and secure in any new environment.
• All provision needs to be consistent, with the same supporter available and timing consistent.
• Parents should be treated as partners throughout the process of providing services.
• Many children will need 1:1 support, and all staff should have access to training and supervision.

Policy implications

This study represents a call to increased funding for services to families of children and young people with ASD. It demonstrates clearly that short breaks for these youngsters are both feasible and desirable, but it also underlines the need for appropriate support, training, preparation time and personal matching. Given the extreme stress of supporting many of these children at home, the provision of increased support services to families may be a lifeline for many, and an eventual saving in terms of community care budgets.

Implications for participatory methodology

This study made no claim to involve service users as researchers, but instead adopted a 'consultancy' model, in which a group of young people remained involved with the project, built up trust with the researcher, and were able to contribute their views and unique insights as service users.

The implications are:

• Models of involvement short of full participation may be more appropriate for some research studies.
• Initial doubts about communicating with a group of service users can be overcome by appropriate and creative means (as with the pub group!).
• Researchers may need to be patient in giving time and energy to support and build up trust with a group of service users.
• It is important to build in flexibility to the research design, so that the insights of the 'consultants' can be incorporated into the research.