Welcome to the survey for teenage girls on the autism spectrum*

This survey is for teenage girls (aged 13-18) on the an autism spectrum. If you are not a teenage girl, or if you do not have autism, please do not complete this survey. If you are a teenage girl and are unsure about completing this survey, please ask your parent/guardian for advice.
* Note: we acknowledge that individuals have preferences in relation to language used about autism. Efforts have been made to be inclusive of preferences by using both person first and identify first language, where possible; any error in this area if not intended to cause offence. 
 
This survey is part of a research study. Here is some information about the research study:
  • Title of Study: Masking social difficulties: a study of the lived experience of attempting to mask social difficulties by teenage girls on the autism spectrum. 
  • The aim of the research: The research is about autistic teenage girls and their ability to mask social difficulties in some settings. The aim is to find out how teenage girls learn to mask, when they choose to mask difficulties and the impact that has on them. It is hoped that undertaking this research will help gain a better understanding of how autistic teenage girls cope with social challenges; it is also hoped that this understanding will help families and professionals support girls in addressing any difficulty relating to masking social difficulties.
  • Taking part: If you decide to participate, you will be asked to complete a questionnaire about masking social difficulties. After you submit the survey, you may be asked to complete an interview. If you are asked to complete an interview, more information will be shared with you before the interview.  
More information about the research study:
  • Consent to Participate in this Research Study: Before you decide whether you would like to take part in this research, it is important that you understand why the research is being carried out, why you are being invited to participate and what it would involve for you. Please take time to read the information carefully and decide whether or not you wish to take part. If you do decide to take part, you can change your mind at any time and you do not need to explain your reasons for doing so. If you do take part and then decide to withdraw, your data can be removed up until the point that the thesis has been written and submitted.
  • What will happen to the findings? The findings from the questionnaire and the interview will be typed up. It will be written in a thesis which may be published in a scientific journal. 
  • Will taking part be confidential? ‘Confidential’ usually means keeping something secret or not sharing information. The purpose of this research is to share what young people have said about their experiences, so in that respect what you say will not be kept confidential. However, the information you provide will be anonymised, so that it cannot be linked to you. This means using a pseudonym when describing your views and changing any details that could identify that what was being said came from you. Once the recording from your interview has been transcribed, the recording will be deleted and all of the data stored will be recorded as belonging to the pseudonym. All data collected during the study will be stored and used in compliance with the UK Data Protection Act (1998). 
  • Are there times when my data cannot be kept confidential or anonymous? If you tell the interviewer something that makes her concerned about your safety or the safety of someone else, then she might have to share that information with others in order to keep you or someone else safe. However, she would always aim to discuss this with you first when possible. 
  • Who is doing the research? My name is Diana Jordan and I am studying Child and Adolescent Educational Psychology. Completing this research is one of the main components of this course.
  • Further Information: This research has been formally approved by the Tavistock and Portman Trust Research Ethics Committee. If you have any concerns about the research please contact: Simon Carrington, Head of Academic Governance and Quality Assurance (academicquality@tavi-port.nhs.uk). If you have any questions about the research or if you would like to know more about it you can contact me at autismresearch2020@gmail.com. 
Consent
  • I have read and understood the participant information about this survey.
  • I understand that my participation is voluntary and that I am free to withdraw at any time without giving a reason (this means I can say I don’t want to be a part of the research project at any time).
  • I understand that if I give my details at the end of the survey, I might be contacted to do an interview.
  • I know that the findings from the questionnaire will be typed up by Diana and be written in a thesis which may be published in a scientific journal.
  • I understand that if I tell Diana something that concerns a young person’s safety, then she might have to share that information with others in order to keep me or someone else safe. 
  • I agree to take part in the study.

Question Title

* 1. Do you consent to completing the survey? 
Did your parents read the information and do they consent to you completing the survey?

T