de Julio al 31 de Julio del

Appendix 08: Interview Schedule Appendix 09: Interview Feedback Form

Appendix 10: Hospital Anxiety and Depression Questionnaire (HADS) Appendix 11: General Health Questionnaire Short Version (GHQ-12) Appendix 12: Example coded transcript

Appendix 13: Extract from thematic analysis Appendix 14: Respondent validation form

Appendix 01: Studies excluded from the literature review

Studies Excluded from the Psych Info and OVID Medline search

Exclusion Reason Frequency

Gender Identity Sexual Deviance Book chapter Book review Dissertation Parenting Genetics or physiological Psychiatric study Intellectual Disability Interventions Child study Non-ASD Animal study Language Other 6 4 15 5 1 13 16 7 13 8 5 15 3 1 12

Appendix 03: Recruitment information on the website

Retrieved from: https://sites.google.com/site/womenandautismspectrumdisorder/

Researchers at University College London want to learn more about women's experiences of autism spectrum disorder (ASD) Who are we looking for?

This research study is looking for:

 Young women aged between 18 to 30 years,

 who received a diagnosis of Autism Spectrum Disorder (ASD, including high-functioning autism and Asperger Syndrome)

after January 2004

What would happen if I took part in the study?

If you decide to take part in the research study, you would:

 Be asked a some questions on your general health, mood and ASD

 Be interviewed by a female researcher on your experiences of ASD as a woman Will I get paid?

Participants who take part will get £15 in cash to thank them for their time There may be possible benefits if you take part in the study.

1. You could find out more about yourself and how your ASD has influenced who you are

2. You would be contributing to scientist's knowledge of female ASD and could help with future diagnosis of women To take part in this research study or for more information, please contact Sarah Bargiela at [email protected]

The principal researcher for this study is Dr Will Mandy at University College London

About the Researchers

The 'Experiences of Women with ASD' study is being lead by Dr. Will Mandy, a senior lecturer on the Clinical Psychology Doctorate at UCL. His main research interests are Autism Spectrum Disorder and Eating Disorders.

Sarah Bargiela is a second year trainee on the UCL Clinical Psychology Doctorate. This study forms the main part of her thesis. Her research interests are Autism Spectrum Disorders and Community Psychology.

Robyn Steward is a consultant for the 'Experiences of Women with ASD' study. Robyn is the author of 'The Independent Woman’s

handbook to super safe living on the Autistic Spectrum.' She also has a diagnosis of Asperger's syndrome. Robyn is an Autism and

Appendix 05: Information Sheet

Information Sheet for UCL Research Studies

Title of Project: Experiences of being a woman with ASD

Ethical Approval: This study has been approved by the UCL Research Ethics Committee (Project ID Number): 5339/001

Researcher Details

Sarah Bargiela, Trainee Clinical Psychologist

Research Department of Clinical, Educational and Health Psychology, UCL, 4th Floor, 1-19 Torrington Place, London, WC1E 7HB

E: [email protected] T: 07880801618

Who are we looking for?

We would like to invite women aged between 18 – 30, who have been diagnosed with autism spectrum disorder (ASD), including high-functioning autism and Asperger Syndrome, by a clinician, after the year 2003, to participate in this research project.

Details of Study

Aims of the research and possible benefits

The aim of this research is to find out about the experiences and coping strategies of women who have a diagnosis of autism spectrum disorder (ASD). The benefits of

participating are that you will be contributing to helping researchers to better understand female ASD and help women in the future be diagnosed more accurately.

What will happen if you agree to take part?

Once you have got in touch, I will give you a copy of this information sheet and my contact details and you will be welcome to call me or email me with any questions. After this, if you decide you would like to take part we will arrange a date and time to meet up.

The meeting will involve me asking a number of questions on different topics. These will be about your general health, mental health, ASD traits, verbal abilities. I will then we ask you some questions about your life experiences in different contexts (e.g. school, home, socially). Your responses for this part will be audio recorded on an MP3 player so that I can listen again and write up the responses. All your answers will be kept private and your name will not be one any of the answers that are written up. Refreshments will be provided and you can have a break any time you need.

The whole process should last about an hour and a half, although it may take slightly longer depending on how much you choose to say. The interview can take place at UCL or

decide to be interviewed at UCL a map will be provided with the location and public transport details. If you would more comfortable to have an interview over Skype this can also be arranged.

Any risks you need to be aware of?

As mentioned before, the information from your interview will be anonymised and kept confidential. There could be a few questions on intimate relationships that you might find uncomfortable. I will let you know when I am about to ask them, and you do not have to answer any questions you do not feel comfortable answering. We will agree at the start of interview how you would like to show me when you do not want to answer a question (hand signal, saying “no comment”, showing a card).

Possible benefits to taking part?

Your answers will contribute to research on women with ASD with a view to improving quality of life for other young women with a diagnosis and providing information on coping strategies and other women's stories of daily life. In the long term this research hopes to inspire further research on how women with ASD are recognised, diagnosed and supported at an earlier stage in life.

Arrangements for ensuring anonymity and confidentiality

You may withdraw your information from the project at any time up until it is transcribed for use in the final report. Recorded interviews will be transcribed (written up) and the MP3 recorder will then be wiped clear. The MP3 recorders will be kept in a locked cabinet, within UCL and the interviews will be transcribed on the premises. Your data will be anonymised and kept confidential.

If you decide to take part you will be given this information sheet to keep and be asked to sign a consent form.

 If you do not understand any of the information above, or something is not clear, please feel free to ask me either face to face, on the phone or via email.

 It is your decision to take part in this study. If you choose not to take part, it will not affect you or disadvantage you in any way.

 If you do decide to take part, and then later change your mind, you are free to withdraw from the study at any point. You will not have to give me a reason if you do decide to withdraw.