Autism Interventions: Making the Evidence Base Accessible

Background: Individuals with autism spectrum disorders, their carers, service providers and others are often confused by the plethora of autism interventions and the claims made for them. This can lead them to try useless, expensive and potentially harmful interventions.

Objectives: The Research Autism website at www.researchautism.net was designed to provide a trusted, objective, scientifically valid and reliable source of information about autism interventions that was also user-friendly and accessible.

Methods: In April 2006 an information manager was recruited to set up and run the Research Autism website. His role included identifying the most commonly-used interventions, researching the claims made for each of these, and identifying any relevant efficacy studies published in peer-reviewed journals. Once a draft had been written up for each intervention, it was sent to a relevant subject expert. That expert checked the information and evaluated each of the peer-reviewed studies using a standardized scoring system. The expert then provided a ranking for that intervention, using a readily-understood system of ticks and crosses. The draft was then sent to a person with ASD, a parent and a service provider to check the user-friendliness of the information. It was also sent to three members of Research Autism’s Scientific and Advisory Committee who checked the accuracy of the information and reviewed the ranking provided by the subject expert. Finally, the draft was sent to the full Scientific and Advisory Committee for approval and sign-off.

Results: The Research Autism website now contains information about 100 plus autism interventions. Each intervention is graded according to the level of scientific evidence that has been published in peer-reviewed journals, with links to the abstracts or full papers of relevant studies. The information on the site is available in 10 languages (via Microsoft translator); can be viewed in fonts, sizes and colours to suit the individual, and can be heard via a screen reading system. The site currently attracts approximately 30,000 visitors a month from around the world including individuals with ASD, carers, service providers, researchers and others. The site has had a mixed reaction, with most visitors being extremely positive. For example, Professor Simon Baron-Cohen, Professor of Developmental Psychopathology at the University of Cambridge stated that "The Research Autism website is now the first-choice location internationally if you want to obtain clear, reliable, comprehensive, up-to-date, and independent summaries of the evidence for efficacy of interventions for autism". However there have been some negative reactions from those who support specific therapies, such as facilitated communication, which are not supported by the existing evidence base.

Conclusions: It is possible to create an objective, scientifically valid and reliable resource on autism interventions, which is also user-friendly and accessible to people throughout the world. However there is still a huge amount of work to be done, adding information about more interventions, making the site more user-friendly and accessible, and ensuring that it is promoted to those people who need to know about it most.