4 Research recommendations

The Guideline Development Group has made the following recommendations for research, based on its review of evidence, to improve NICE guidance and patient care in the future. The Guideline Development Group's full set of research recommendations is detailed in the full guideline.

4.1 Facilitated self-help for anxiety and depression in adults with autism

What is the clinical and cost effectiveness of facilitated self-help for the treatment of mild anxiety and depressive disorders in adults with autism?

Why this is important

Anxiety and depressive disorders commonly coexist in people with autism and are associated with poorer health outcomes and quality of life. This may occur because of the direct impact of the anxiety or depression but also because of a negative interaction with the core symptoms of autism. There is limited access and poor uptake of facilitated self-help by people with autism, largely due to limited availability but also because current systems for the delivery of such interventions are not adapted for use by people with autism. In adults without autism, facilitated self-help is an effective intervention for mild to moderate depression and anxiety. The development of novel methods for the delivery of facilitated self-help could make effective interventions available to a wider group of people.

The suggested programme of research would need to: (a) develop current methods for the delivery of self-help measures to take into account the impact of autism and possibly include developments in the nature of the materials, the methods for their delivery and the nature, duration and extent of their facilitation; (b) test the feasibility of the novel methods in a series of pilot studies; and (c) formally evaluate the outcomes (including symptoms, satisfaction and quality of life) in a large-scale randomised trial.

4.2 The structure and organisation of specialist teams

What structure and organisation of specialist autism teams are associated with improvements in care for people with autism?

Why this is important

The Department of Health's autism strategy (2010) proposes the introduction of a range of specialist services for people with autism; these will usually be built around specialist autism teams. However, there is little evidence to guide the establishment and development of these teams. There is uncertainty about the precise nature of the population to be served (all people with autism or only those who have an IQ of 70 or above), the composition of the team, the extent of the team's role (for example, diagnosis and assessment only, a primarily advisory role or a substantial care coordination role), the interventions provided by the team, and the team's role and relationship with regard to non-statutory care providers. Therefore it is likely that in the near future a number of different models will be developed, which are likely to have varying degrees of success in meeting the needs of people with autism. Given the significant expansion of services, this presents an opportunity for a large-scale observational study, which should provide important information on the characteristics of teams associated with positive outcomes for people with autism in terms of access to services and effective coordination of care.

4.3 Augmentative communication devices for adults with autism

What is the clinical and cost effectiveness of augmentative communication devices for adults with autism?

Why this is important

Many people with autism experience significant communication problems (for example, the absence of any spoken language or significant deficits in interpersonal skills), which have a profound effect on their ability to lead a full and rewarding life. It is probable that these problems are related to the core symptoms of autism and are likely to persist for most people given the life-long course of autism and the lack of effective interventions for these core symptoms. A number of communication devices have been developed for autism but few, if any, have been subjected to a proper evaluation in adults. Despite this lack of formal evaluation, individual services have made considerable investments in augmentative communication devices. Research that provides high-quality evidence on the acceptability and the clinical and cost effectiveness of augmentative communication devices could bring about significant improvements in the lives of adults with autism.

The suggested programme of research would need to identify current devices for which there is: (a) some evidence of benefit (for example, case series and small-scale pilot studies); (b) some evidence that it meets a key communication need for people with autism (based on reviews of people's need in this area); and (c) indication that the device is feasible for routine use. The identified device(s) should then be formally evaluated in a large-scale randomised trial.

  • National Institute for Health and Care Excellence (NICE)