24/10/2025 Version 2.2 Title of study: A qualitative study exploring the experiences South Asian women diagnosed or self-identifying as autistic as an adult in the UK You are invited to participate in a research study that aims to explore the experiences of South Asian women who have been formally diagnosed or selfidentified as autistic in adulthood in the UK. Before deciding whether to participate, it is important for you to understand why the research is being carried out and what it will involve. Please take the time to read the following information carefully. If there is anything that is not clear or if you would like more information, please get in touch using the contact details provided below. Who is conducting the study? The study is being conducted by Shejmin Akhtar (Lead Researcher), Dr Camilla Smith (Principal Investigator), Dr Anam Elahi, and Marilla Bianco (Research Assistant). Contact details for the Lead Researcher and Principal Investigator are available at the end of this document. What is the purpose of this study? The purpose of this study is to understand the unique perspectives and experiences of South Asian women who have been diagnosed or self-identified as autistic as adults. The research seeks to explore: 1. Recognition and acceptance of their autistic identity. 2. Strengths and challenges associated with adult autism in this group. 3. The role of family and culture in shaping their experiences. Your participation will help address the gaps in the existing research and provide insights into the needs of South Asian autistic women. Eligibility Criteria: You can take part in this study if you: • • • • Identify as a cisgender woman (assigned female at birth and identify as a woman) Identify as South Asian (for example, Bangladeshi, Indian, Pakistani, Sri Lankan, Nepali, Bhutanese, or Maldivian heritage) Have received a formal autism diagnosis or self-identify as autistic, and this occurred at age 18 or older Were born in the UK or moved to the UK at age 5 or younger Lead Researcher Details: __________________________________________________________________________________________ __________ Shejmin Akhtar, Trainee Clinical Psychologist, Doctorate in Clinical Psychology, Eleanor Rathbone Building, University of Liverpool shejmin.akhtar@liverpool.ac.uk
24/10/2025 Version 2.2 • Are fluent in English Exclusion Criteria: You will not be able to take part in this study if: • • At least one of your parents/guardians/carers does not identify as South Asian You have a diagnosis of an intellectual disability (note: for the purposes of this study, intellectual disability does not include other neurodevelopmental conditions such as autism, ADHD, or dyslexia) Please note: eligibility will be confirmed in a short screening call before the interview. Do I have to take part? No, participation is completely voluntary. You are free to withdraw from the study without providing a reason. If you choose to withdraw, you can do so up to two weeks after your interview. After this period, the interviews will have been transcribed and data will have been anonymised, and it will no longer be possible to remove your information from the analysis. What will happen if I take part? If you agree to participate, the first step will be a brief screening call via Microsoft Teams. This will last around 15 minutes and will involve a few questions to confirm whether you meet the eligibility criteria for the study. This short screening call is in place to confirm that participants meet the eligibility criteria and to ensure the research process runs smoothly and appropriately. This step is a common feature in online studies to help ensure fairness and accuracy. As part of the screening process, the camera will need to be on, and the space should be well lit to ensure clear communication. The screening will not be recorded, and no information from the discussion will be stored. During this call, you will also be able to ask any questions you may have about the study. If you are eligible and still wish to take part, we will then arrange a time for the main interview. The main interview will last approximately one hour and will also take place via Microsoft Teams. This interview will be recorded for transcription purposes. At the start, you will be asked a few background questions, such as your age group, ethnic background, religion, whether you were formally diagnosed or self-identified as autistic, and any mental health or neurodevelopmental conditions you may have. These demographic questions are collected anonymously, kept separate from your interview responses, and are entirely optional. You may decline to answer any of these questions without this affecting your participation in the study. The purpose of collecting this information is to help the researchers understand the characteristics of Lead Researcher Details: __________________________________________________________________________________________ __________ Shejmin Akhtar, Trainee Clinical Psychologist, Doctorate in Clinical Psychology, Eleanor Rathbone Building, University of Liverpool shejmin.akhtar@liverpool.ac.uk
24/10/2025 Version 2.2 the group taking part, for example the range of ages or the proportion of participants with specific experiences. The interview will then explore your thoughts, feelings, and experiences related to your autistic identity, diagnosis process, strengths, challenges, and the influence of family and cultural factors. Following the interview, you will have the option to email the researcher within two weeks if you would like to provide any additional information or clarification related to the interview questions. Any additional information you provide will be added to your transcript and included in the analysis. As a thank you for your time, you will receive a £20 voucher upon completing the main interview. Please note that this voucher does not apply to the brief screening call. Will I be recorded? Yes, the main interview will be recorded using Microsoft Teams. Teams records both audio and video together, but the video will not be kept. After the interview, the recording will be processed so that only the audio is retained for transcription purposes. The video file will be deleted immediately after the audio has been separated and will not be watched or analysed. Please note that the short demographic questions asked at the beginning of the interview will not be recorded. The audio recording will be securely stored, and only the research team will have access to it. The interview recordings will not be used in the reports or publication of the study. After the transcription, your data will be anonymised and any identifying information will be removed. Audio recordings will be destroyed and/or deleted once the interviews have been transcribed before analysis. What are the possible benefits of taking part? If you are eligible and take part in the main interview, you will receive a £20 voucher as a thank you for your time and contribution. Additionally, participation could help improve understanding of the experiences of South Asian autistic women and contribute to the development of better support and services for autistic individuals from underrepresented groups. What are the potential risks? There are no significant risks associated with this study. However, discussing personal experiences may bring up sensitive emotions. If you feel uncomfortable or distressed at any point, you are free to pause or stop the interview. You will be given the right to withdraw your data, before anonymisation and transcription of data, and Lead Researcher Details: __________________________________________________________________________________________ __________ Shejmin Akhtar, Trainee Clinical Psychologist, Doctorate in Clinical Psychology, Eleanor Rathbone Building, University of Liverpool shejmin.akhtar@liverpool.ac.uk
24/10/2025 Version 2.2 you do not have to participate. You will also be given the researchers’ details should you have any questions or require more information about the study. You will also be provided with information on support services if needed. What should I do if I want to take part? If you do decide to take part in the study, the researcher will first arrange for you to provide your informed consent to participate in the study. You will be asked to read and sign a consent form to confirm that you understand the study and agree to participate. You will need to return this signed consent form before the interview. On the day of the interview, we will briefly review the consent form to ensure that you are still willing to take part, and verbal consent will be recorded at the start of the interview. You will then undertake the research procedure as detailed above. You will be debriefed on completion of the study. You may contact the lead researcher if you need further information or guidance to support you through this process. What will happen to the results of the research study? The findings of this study will be used in a doctoral thesis and may be published in an academic journal. If you would like, a summary of the research findings can be shared with you once the study is completed. Will my information be kept confidential? Yes, all the information you provide will be kept strictly confidential. The information you give us will be anonymised so your name won’t be attached to any data, instead a participant letter or number will be assigned to you. All data will be securely stored in accordance with data protection laws. The results of the study may be published, but no individual will be identifiable from any reports or publications. If you would like to receive a summary of the results, your email address will be stored securely. These details will not be attached to any interview data and will be destroyed once a summary of the results have been shared with you. There are some limits to confidentiality: if what is said in the interview makes me think that you, or someone else, is at significant risk of harm, or if you disclose involvement in a criminal offense, I will have to break confidentiality and speak to a member of staff about this. I will let you know if I need to take this step. How will my data be used and stored? The University processes personal data as part of its research and teaching activities in accordance with the lawful basis of ‘public task’ and with the University’s purpose of “advancing education, learning and research for the public benefit.” Lead Researcher Details: __________________________________________________________________________________________ __________ Shejmin Akhtar, Trainee Clinical Psychologist, Doctorate in Clinical Psychology, Eleanor Rathbone Building, University of Liverpool shejmin.akhtar@liverpool.ac.uk
24/10/2025 Version 2.2 Under UK data protection legislation, the University acts as the Data Controller for personal data collected as part of the University’s research. Dr Camilla Smith will act as the Data Custodian for this study, and any queries relating to the handling of your personal data can be sent to her by email (camilla.smith2@liverpool.ac.uk). Further information on how your data will be used can be found in the table below: How will my data be collected? All interviews will be conducted remotely and recorded using Microsoft Teams. How will my data be stored? Your data will be securely stored on the University M Drive. How long will my data be stored for? Your data will be stored for 10 years in line with University policy. What measures are in place to protect The University M Drive is secure and the security and confidentiality of my no data will be stored with names or data? personal details of participants. Will my data be anonymised? Yes, all data will be anonymised. How will my data be used? The data will be analysed and the results will be used in a doctoral thesis and may be published in an academic journal. Who will have access to my data? The research team will have access to your data (Shejmin Akhtar, Dr Camilla Smith, and Dr Anam Elahi). Will my data be archived for use in other No, the data will not be archived for research projects in the future? use in future research projects. How will my data be destroyed? All data will be deleted after 10 years in line with University policy. Who is organising and funding the research? The research is being conducted and funded as part of a doctoral research project at the University of Liverpool. Who has reviewed the study? The study has been reviewed by the University of Liverpool Research Ethics Committee to ensure that it meets standards of scientific conduct. What can I do if I am unhappy with the study or if I have any questions? We value the time you will take to participate in the study and will try to ensure you are comfortable with all aspects of your participation. If you have any concerns about the study or if you have any further questions, please contact the research team. Lead Researcher Details: __________________________________________________________________________________________ __________ Shejmin Akhtar, Trainee Clinical Psychologist, Doctorate in Clinical Psychology, Eleanor Rathbone Building, University of Liverpool shejmin.akhtar@liverpool.ac.uk
24/10/2025 Version 2.2 Lead Researcher Shejmin Akhtar Eleanor Rathbone Building 74 Bedford Street South Liverpool L7 7DP shejmin.akhtar@liverpool.ac.uk Principal Investigator Dr Camilla Smith Eleanor Rathbone Building 74 Bedford Street South Liverpool L7 7DP camilla.smith2@liverpool.ac.uk If you wish to make a complaint, please contact the University of Liverpool Research Ethics and Research Integrity team at ethics@liverpool.ac.uk, ensuring to include the study title in your message. Lead Researcher Details: __________________________________________________________________________________________ __________ Shejmin Akhtar, Trainee Clinical Psychologist, Doctorate in Clinical Psychology, Eleanor Rathbone Building, University of Liverpool shejmin.akhtar@liverpool.ac.uk
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