You can watch a video of the answer here.

In the study, you can communicate however is best for you, including typing, talking, using AAC (Augmentative and Alternative communication) or using more than one way to communicate.

It’s OK to use strong language, like swearing.

It’s OK to stim, take medication, eat or drink during interviews.

We will try to make any accommodations needed to help you take part in the research. By accommodations we mean making changes in how we do things to help you. You can tell us about new needs or if accommodations aren’t working at any point in the study, and we will do our best to support you.

We will talk to you about accommodations which may help you (e.g: needing regular breaks, or written documents in large print) before your first interview.

If you need a sign-language interpreter, and this is not something already funded for you, we can pay for an interpreter.

You can watch a video of the answer here.

If you want to take part, we will ask you some questions about yourself, including:

• Your background, such as your age, qualifications, and ethnicity

• How you communicate

• Your reproductive health experiences

If you do not have an Autism diagnosis, we will ask you 14 multiple choice questions that can indicate if a person is Autistic.

You can give this information:

• Online, here

• By completing a Word document with the questions. Please email us to get a copy of the questions - AutismM2M@swansea.ac.uk

• By giving your information to a researcher from the study (Gemma, Harriet or Rebecca) in a different way, such as through a phone call, zoom meeting, by email or using voice messages (see the top of this webpage for Harriet’s phone number).

• By asking for a copy to be sent to you in the post (we will provide a stamped addressed envelope for you to send it back to us).

It will take around 30 minutes.

You can watch a video of the answer here.

You will take part in ten interviews over the next five years, roughly one every six months.

If you are not selected to take part, you will be asked if you would like to be contacted in the future for other research opportunities. You can say “yes” or “no” to this.

We will aim for you to always work with the same researcher but because this is a long project there is a chance your named researcher may change. If this happens, the interview will follow the same steps as before.

All the interviews and activities are ‘remote’ (you will not be in the same place as the researcher during any of the activities). You can choose how to be in touch with your researcher, including:

o Video call (e.g. Zoom) – you can turn off your camera

o WhatsApp

o Telephone call

o Email

There are four stages to the research. Stages 2-4 will be repeated every six months for five years.

You can see a flow diagram of the stages here.

Stage 1: If you are selected to take part, you will have one or two meetings to have a conversation with your researcher, to:

• Answer any questions you have about the study.

• Ask you some questions to make sure you fit the study criteria. These will be used to confirm your identity and discourage “scammer” participants.

• Checking that you agree to take part in the research, using a consent form.

• Discussing any support or accommodations you need to take part.

• Discussing how you would like to be interviewed.

This will take around an hour.

Stage 2: We will send you information about the interview designed to help you prepare your thoughts:

We will send you (by email, post, or both – whichever you choose) some information about the interview, including:

• The topics we would like to talk to you about, and some optional templates that you can use to help you plan what you want to tell us, if this is helpful.

• Any stationery (e.g: coloured paper, pens and pencils) needed to help you take part.

You can discuss this with your researcher if you want. You can also have another meeting with them to get help preparing your thoughts.

Stage 3: Interviews

You will agree a day and time for your interview with your researcher.

You can choose to have someone (like a trusted friend or family member) with you.

You can use any notes you have made in preparation if you’d like to. Alternatively, we can ask you some questions to help guide you e.g., “Would you like to tell me about your experience of periods?”

Each interview will last around one hour, and we will record this to help us remember what you said. This recording will be typed-up into a ‘transcript,’ so we can read what you said. This will be done by a transcription service. If you would like to see your transcript, we can send a copy to you.

If it is easier for you to have the conversation over a longer period of time, for example by exchanging emails or voice notes with your researcher, we can do this option instead.

You can decide what you want to talk about during interviews, and also choose to:

• Skip any topics;

• Tell us as much or as little as you want;

• Take a break whenever you like;

• End the interview at any time.

Stage 4: Check-in

A few days after each interview, your researcher will ask you if you want to give any feedback about the interview, including if you would like anything to change for next time.

You can watch a video of the answer here.

You will have two weeks after your interview to tell us you would like something removed from your transcript.

You can also always contact us, during the 5-year study period, if you would like to add any extra information to the answers that you have given.

You can watch a video of the answer here.

This study will last five years. You will have two interviews per year, a maximum of 10 interviews. They will be around every six months, with flexibility as we understand that you may be busy.

The first time you are involved in the study, it will take up to three hours.

For the rest of the interviews, it will take up to two hours.

This is a total of around 20 hours over 5 years.

You can watch a video of the answer here.

Yes, if you would like to. You can choose to receive the research results by email, post, or both.

You can watch a video of the answer here.

You will not be paid for the initial discussions you have with your researcher.

For each interview that you take part in, you will receive a £25 electronic voucher for a shop of your choice.

The maximum amount in vouchers you can receive is £250 (one for each of the 10 interviews).

You will receive this voucher (by email, post, or both) up to two weeks after you have taken part in each interview.

If you decide to leave the research, you will not receive any further payments.

We can provide you with stationery to help you gather your thoughts before the interviews. You can keep this even if you quit the research.

You can watch a video of the answer here.

Taking part in the research will help us understand the reproductive healthcare of Autistic people and will hopefully benefit the Autistic community in the future.

We will use your answers to help us develop a toolkit for Autistic people and health professionals to improve access to reproductive healthcare.

You might like sharing your experiences and ideas and feel good about helping us learn.

You can watch a video of the answer here.

Yes. The Swansea University School of Health and Social Care Research Ethics Committee said that this research has been planned properly and can happen. (Approval number: 3 2024 7821 7735)

You can watch a video of the answer here.

No, not if you do not want to. Ff you do choose to talk about upsetting topics, we aim to make it as comfortable and safe as possible

We will send you a list of places where you can get support if you need it.

You can watch a video of the answer here.

You can quit at any time. You can either:

• Tell your researcher you want to quit, or

• Stop replying when your researcher contacts you.

You can also take a break if you need to, such as missing out on one (or more) of the ten interviews. This is something you can discuss with your researcher.

You do not need to give a reason why you no longer want to take part or why you need a break.

You can watch a video of the answer here.

If you tell us to stop using your answers, we will do this as soon as you tell us.

We may have already used your answers in our analysis and writing about the study, and we cannot remove your answers from this.

When something is published, it goes onto the internet, with anything that would identify you taken out, and the answers can never be removed.

You can watch a video of the answer here.

You will answer some questions about yourself at the start of the project.

We will need your phone number or email address so we can contact you to arrange interviews. If you wish to receive stationery, vouchers or copies of the study findings by post, we will need your postal address.

You will also need to give us your full name and email address to be able to receive vouchers after each interview. This will be shared with Swansea University’s finance team.

You can watch a video of the answer here.

To keep your answers private, we will:

• Keep your answers separate from your name and contact information.

• Use a different name (a “pseudonym”) when sharing your answers.

• Store any electronic ‘data’ (e.g. your email address, or your answers from the interviews) as an encrypted file on a Swansea University server, accessed by password-protected Swansea University laptops.

If you tell us anything that makes us think that you or someone else is currently in serious danger, we may need to tell somebody about this. We will tell you if we need to do this.

We will follow Swansea’s safeguarding policy, which is available here.

You can watch a video of the answer here.

The Research Team will look at your answers.

We will also share small parts of your interviews (without any names of people or places), with our Community Council of Autistic people.

• We will try not to use any parts of your answers that could make it easy for someone to identify you. If you have any concerns about this happening, then you can discuss this with your researcher.

We will also use your answers in our academic papers and reports, books, or book chapters about the project, in conference presentations and on social media. You can choose which of these you agree to on the consent form.

• We might use quotes where we will write exactly what you have told us, or we might put several people’s experiences together into sentences e.g., ‘twenty of our participants experienced heavy periods’.

You can watch a video of the answer here.

You do not have to share your answers with other research teams (outside of the Autism from Menstruation to Menopause research team) to take part in this study.

If you are interested in sharing your answers, we will give you another information sheet about “data sharing” after you have consented to take part in this study.

At the end of the data sharing information sheet you will be asked to decide (say “yes” or “no”) if you want to share your answers.

You can watch a video of the answer here.

Your answers will be kept for 20 years. After this all information will be destroyed.

You can watch a video of the answer here.

You have a right to access your personal information. Please visit the Swansea University Data Protection web pages for further information about your rights, and how to make a complaint about how your data was used.