Assessing Repetitive Behaviours and Imagination in Autistic Adults using SelfReport Measures
Information Sheet
Thank you for your interest in taking part in this study. This information sheet
will provide detailed information about why we are doing this study and what
it will involve for you. Please email the researchers to ask about anything that
is not clear, our contact details are at the bottom of the information sheet.
What is the research about?
This research is about the presence of repetitive behaviours and their link with
imaginative and creative activities. Repetitive behaviours can include
movements such as hand flapping or rocking, as well as routines and
sameness. This study is being carried out as part of Sarah Barrett's PhD
research project.
Why have I been invited to take part?
We are inviting you to take part in our study because you are an adult with a
diagnosis of autism spectrum disorder that has been confirmed by a clinician.
This may be a diagnosis of Autistic Disorder, Autism Spectrum Disorder, High
Functioning Autism, Childhood Autism or Asperger’s Syndrome.
What are the aims of the research?
The first aim is to test a new questionnaire about repetitive behaviours. The
second aim of this research is to gather information on imaginative and
creative activities of adults with autism or Asperger's syndrome, both in the
past and now.
Do I have to take part?
No, it is your decision to take part in this research. Please read this
information sheet carefully and email the researchers about anything that is
unclear. If you agree to take part then you must provide your consent before
moving on with the study. If you decide to take part, you can change your
decision at any time and withdraw from the study.
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What will I have to do?
You will complete an online survey for 10-20 minutes. This is made up of three
short questionnaires. The first will ask you about your repetitive behaviours,
activities and routines. You will read a series of 20 questions and provide
answers on a rating scale. The second will ask you about your imaginative and
creative activities and interests. You will be asked to write short summaries in
response to these. The last questionnaire will ask you more general questions
about your everyday behaviour and preferences, this is the Autism-Spectrum
Quotient (AQ) that you may already be familiar with.
This is an online study, so you will answer the questions on a web page hosted
by Google. You will also be asked some general information about yourself
such as your age, gender and your diagnosis. However your responses will be
entirely anonymous.
How long will it take?
All the questionnaires together should take around 10-20 minutes to complete.
You can take as long as you like to finish them. You can take a break if you like
- but leave the web browser with the questionnaire open or you will lose your
answers. Do not click the “Back” button on your web browser as your answers
will not be saved.
Who will be able to see my responses?
Your responses will be collected and held anonymously. This means there will
be no way to trace the information back to you or identify you personally.
Your responses will be kept on Cardiff University computers and only the
researchers directly involved in the project will see them. However, your
anonymous data may be shared with other researchers who will not be able to
identify you.
Your responses to the imagination questions may be
anonymously quoted in reports or publications related to the study. Your
anonymous responses will be kept for an unlimited amount of time according
to the Data Protection Act 1985. Once you have submitted your responses you
will not be able to withdraw them from the study.
Are there any reasons why I should not take part?
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The questions are not designed to be negative in any way. However not
everyone feels comfortable sharing information about themselves. You may
skip any questions that you do not feel comfortable answering (apart from the
information at the beginning) or stop answering the questionnaires at any
time.
How will I benefit from the research?
You will not receive any direct benefit from the research. If the project is
successful, other people might benefit. Clinicians may use the questionnaire
when they collect information about a person’s behaviour and needs.
What will happen at the end of the project?
Any findings from the research may be written up as a research article and
published, and included in Sarah Barrett's PhD thesis. You will not be
identifiable from these articles. The anonymised findings will be placed on the
Wales Autism Research Centre website around 12 months after the project is
completed for you to see after the study. The website address is:
http://sites.cardiff.ac.uk/warc/
Who is funding this research?
This research is funded by a PhD studentship, which is jointly funded by the
Economic and Social Research Council and Cardiff University School of
Psychology.
Who has reviewed this research?
This study has been reviewed and approved by the Cardiff University School of
Psychology research ethics committee.
If you have any questions: You can contact us by telephone, email or post.
Our contact details are:
Sarah Barrett
PhD Student
School of Psychology
Cardiff University
57 Park Place
3
Prof Susan Leekam
School of Psychology
Cardiff University
Tower Building, Park Place
Cardiff
CF10 3AT
Cardiff
CF10 3AT
Tel: 029 208 74007
Tel: 029 208 75372
Email: BarrettSL2@cardiff.ac.uk
Email: LeekamSR@cardiff.ac.uk
Who do I contact if I want to complain about this research?
Secretary of the Ethics Committee
School of Psychology
Cardiff University
Tower Building
Park Place
Cardiff
CF10 3AT
Tel: 029 2087 0360
Email: psychethics@cardiff.ac.uk
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