The study: The aim of this study is to answer the following two questions:
- How do autistic people use strategies, including logic, reasoning and rules, to understand social situations and other people’s reactions, and to empower themselves?
- What are the barriers, including stereotypes, misconceptions and systemic issues, to autistic people using their strengths and appropriate strategies to participate in decision making, the economy and the community?
This study is for people assessed as autistic, identifying as autistic or seeking an autism diagnosis. We are using the term autistic for everyone on the autism spectrum, including those with asperger's syndrome.
We will use the results to produce recommendations for autistic people, decision makers and service providers.
Investigators: We are an autistic-led group consisting of autistic people and people with experience supporting autistic people. This questionnaire has been created by autistic people and will be analysed by autistic people. All aspects of the project are managed by autistic people. Marion Hersh and Sharon Elley are a senior lecturer and lecturer at the Universities of Glasgow and Leeds. Michael Dawson and David Cowan are involved in projects for autistic people in Glasgow and Panda Mery in London. Zyggy Banks supports autistic students at the University of Leicester. Callum Watson is an assistant psychologist who has formerly supported autistic students. To carry out this research, we have received funding from Disability Research on Independent Living and Learning (DRILL), a programme itself funded by the Big Lottery Fund (BLF).
Procedures, confidentiality and anonymity: The initial consent question is compulsory. All the other questions are optional. Just leave a question blank if you do not want to answer, however, we hope you will answer all the questions. The questionnaire is divided into seven sections. Section G – Personal Information for Statistical Purposes is to allow us to try to ensure we obtain responses from all sections of the autistic community. It also allows us to investigate whether some of the answers depend on factors such as age or gender.
The questions have various formats. Some provide a space for your answer. Others ask you to choose one or more answers from a list. If you do not wish or are not able to answer a question then move to the next question.
The questionnaire and consent form are anonymous. If you wish to provide contact information to be sent the results of the research or participate in follow-up interviews, this information will be stored separately from your other responses. To ensure total separation of contact information, it is collected in a short linked survey. Your responses are confidential. Only the seven researchers (Marion, Sharon, Michael, David, Callum, Zyggy and Panda) and Marion's assistant (currently Kathleen McNally) will see them.
At the end of the project we will be storing a table of anonymous data in the Glasgow University store of research data to enable other researchers to use it. Your responses will only be included with your permission - see the question at the end of the questionnaire.
Voluntary participation: Participation is voluntary. You should not feel under any pressure to respond. You can decide to withdraw at any point i.e. stop completing the questionnaire and either submit a partially completed questionnaire or not submit it. It will take you approximately 30 to 45 minutes to complete the questionnaire. You can save your responses and come back to them when you wish.
Benefits and risks: The main benefits are contributing to better understanding of the barriers to participation autistic people experience and the strategies they use to overcome these barriers and empower themselves. We will use the results of the research to make recommendations to autistic people, service providers and decisions makers, aimed at changing the experiences of autistic people, removing barriers and increasing their empowerment. We hope that the project will contribute to making a positive difference to the lives of at least some autistic people. However, this difference will not be noticeable for a number of years. We consider there is no risk of physical harm and minimal risk of emotional harm in filling in this questionnaire.
Publication: We will be producing reports and would like to submit the results for publication in an international journal. We might use brief quotes from your comments; they will be anonymous. We will make sure that no-one can guess your identity.
Ethical approval: We have received ethical approval from the Ethics Committee of the College of Science and Engineering of the University of Glasgow.
Further information: Please contact us if you have questions or would like further information about our research. Do let us know in the short linked survey to collect contact details or contact us if you would like a copy of our published results. We will store the contact addresses separately from the responses.
Email: firstname.lastname@example.org and S.T.Elley@leeds.ac.uk
Post: AnAuternative Project, Biomedical Engineering, Rankine Building, University of Glasgow, Glasgow G12 8LT.
Thank you for your participation in our study