Study Participants Needed – Longitudinal Study

From time to time we are asked to promote studies to our members. We will only do this if the people looking for participants have given us enough information about the involvement of Autistic people and the ethics clearance of the study.

The University of New South Wales is looking for participants for their longitudinal study (which means they study people over a number of years). Here is the link to more information about how to participate in the study STUDY LINK

They have given us the following information about the study which we feel satisfies our standards of Autistic involvement:

This research is part of the Autism CRC, the world’s first national, cooperative research effort focused on autism. The Autism CRC has a strong focus on inclusive research practices. We very much understand the importance of involving autistic adults in every phase of the research and attempt to do this to the best of our ability. Examples of how we have done this to date include:

· Developed a Research Advisory Network – a number of autistic adults from all over Australia who have agreed to provide input into various stages of the research process. We have used this network to check the suitable of some of our research materials (e.g. flyers and information sheets). We have received valuable feedback and adjusted these research materials as suggested. We have also asked members of this network to provide their opinions and ideas on the direction of research which is focusing on older autistic adults.

· Reviewing and adjusting content of questionnaires – the other important role which autistic adults have played in this research so far, is detailed review and adjustment of the questionnaires. We had three autistic adults review our questionnaires, prior to finalising them. We received a large amount of excellent feedback regarding ambiguous language to change, adjustments to formatting to enhance readability, and also removed entire sections of the questionnaire.

· Ongoing adjustments to the questionnaire is occurring as we have autistic adults completing the questionnaire and providing feedback as they go.

We plan to continue to involve autistic adults in interpreting the results, and ideally presenting the results. In the first instance we will employ our Research Advisory Network to gage opinions on the best ways to include autistic people in the interpretation of data. Jane (one of the researchers) will be attending a workshop later this year, in order to learn the best strategies to co-produce research with autistic people (http://www.autismcrc.com.au/researching-autism-together-national-workshop-2015) .

If you have any concerns about the promotion of the study by ASAN AUNZ please contact Katharine Annear on 0400 003 656. For questions about the study please contact the UNSW staff who can be found via the link.