Study information for participants
Taking part in this study was entirely voluntary. Participants were free to choose whether or not to take part. Participants were given detailed information sheets and had time to discuss the study at home and with their clinician.
Participants signed a form giving consent to take part in the study. Even after deciding to take part families were still free to withdraw from the study at any time and without giving a reason. Taking part in the study or withdrawing at any time did not affect the care families received from their local services.
What families found by taking part
One of the research team met with parents and child to explain the study and to undertake a range of initial assessments. During these assessments the researcher made a detailed assessment of the child’s social and communication abilities, their level of language and their general level of learning ability.
Through questionnaires and interviews with the family, we gathered detailed information about the child’s development and current functioning at home, experiences as parents and as a family, the parents' understanding of their child’s problem, and the impact that these have had on their lives. We looked at the way parents and child communicate and interact together, including observations of the typical communication styles of both the parents and the child. We also gathered information about any help or services that the family may have received over the previous six months and additional expenses that may have incurred as a consequence of the child’s difficulties.
Treatment allocation
All families continued with regular treatments supplied by their health and educational services as usual. Half the families, in addition, received the communication therapy described below. This allocation was random allocation design in which the groups were selected by a computer programme that contained no information about the individuals. Allocation was completely by chance and did not depend on characteristics of either the parents or the child.
After six months
After six months there was another short assessment for all families which involved an interview and a video assessment of the child’s communication.
After one year
After one year we repeated the assessments that we conducted at the beginning of the study to find out how the child and family progressed during that time.
All the families in this study had detailed and state-of-the-art assessments from skilled professionals at regular intervals and had feedback about the results of these. The PACT research team were in touch with all families regularly throughout the study to find out how they were progressing and to hear of their experiences and reactions. All parents were given an opportunity to make evaluations of the treatments that they received and to talk about difficulties which may have occurred in the family.
The results of this study should assist in the development of autism treatments throughout the UK.
