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Letter of Information
Social and Emotional Behaviour in Children and Adoelscents with Autism Spectrum Disorder

This research is being conducted by Dr. Elizabeth Kelley in the Department of Psychology at Queen’s University in Kingston, Ontario.
 
What is this study about? The purpose of this research is to analyze how children and adolescents (ages 5 to 17) with Autism Spectrum Disorder regulate their emotions. It also aims to assess how different regulation strategies (e.g. avoidance, acceptance) relate to symptoms of ASD. In this study, I am particularly interested in how these regulating behaviours are associated with communication and social skills. We ask participants to complete a few short surveys asking questions about emotion regulation and ASD symptoms. Some of these surveys will be completed by your child, if possible, and some will completed by yourself, the primary caregiver. In total, we estimate that it takes about 30 minutes to complete these tasks (approximately 15-20 minutes for the caregiver and 10-15 minutes for the child). Please note that the survey only applies to one child at a time. If you have more than one child, between ages 5 and 17, with ASD, you are welcome to complete this survey package once for each child.
 
Are there any risks to my participation? Some of the questions in the questionnaires are of a personal nature. Thus, there is a risk that you will find some of them upsetting. If so, you are free to skip questions, pause, or stop the study.
 
Are there any benefits to my participation? This project does not involve any direct benefits. However, your participation will be helpful in learning more about emotion regulation in ASD and how it can be incorporated into studies and programs in the future.
 
Is my participation voluntary? Yes. Although it would be greatly appreciated if you would answer all materials as frankly as possible, you should not feel obligated to answer any material that you find objectionable or that makes you feel uncomfortable. You may also withdraw at any time with no penalties by clicking "Discard" at the bottom of any page.
 
Is my participation anonymous? Yes. All information identifying you (e.g. your name, email) will be stripped from your responses before I receive them. The responses will be stored in a password protected computer to which only authorized researchers and research assistants will have access.  There will be no way to connect data with individual participants.
 
What will happen to my responses? We will store all responses in a password protected computer. Scientific rigour often requires that we go back to our original records, thus original records will be kept indefinitely. The data from this study may be reanalyzed in the future to answer other questions. The data may also be presented in psychological journals or at scientific conferences, but any such presentations will be of the general findings only, and will not allow for identification of individual participants.
 
Will I be compensated for my participation? No. Your participation in this study is completely voluntary, but is sincerely appreciated by myself and other members of the scientific community who wish to learn more about emotion regulation in ASD.
 
Any questions or concerns about the study and your participation in it may be directed to Elizabeth Kelley at asd@queensu.ca. Any ethical concerns about the study may be directed to the Chair of the General Research Ethics Board at 613-533-2988 (or toll-free at 1-814-535-2988) or Chair.GREB@queensu.ca.
 
This study has been granted clearance according to the recommended principles of Canadian ethics guidelines, and Queen’s policies.
 
Again, thank you. Your interest in participating in this research study is greatly appreciated.
 
 
Dr. Elizabeth Kelley                                                    
Associate Professor                                                    

Kingston, Ontario, Canada. K7L 3N6. 613.533.2000