Interview Schedule used in The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype.
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Experiences of women with ASC
I’m doing research to find out more about women’s experiences of autism. I would like to ask you some questions to help me build a picture of what life has been like for you. The questions I will be asking you will be similar to concerns that other women with ASD have either written or spoken about before. It is important for you to know that you don’t need to answer any questions that you don't feel comfortable with and that there are no right or wrong answers, only your answers.
All your information will be held confidential and if you change your mind after the interview, you can withdraw your answers from the study.
I will be asking you questions on topics that other women with autism think are important. These include friendships, intimate relationships, sensory issues, interests and diagnosis. But I am also interested in any other topics you think may be important for women with autism. At the end I will check with you and find out if there are any topics you think we have missed that you might like to tell me about.
Interests
Let's start by talking about your interests. Many people with autism have focussed interests and hobbies.
What are your interests?
What do you like about your interests?
Has having an interest ever caused you any problems?
Has having an interest ever helped you in any way?
Do you think any of these interests are particularly 'female' and why?
(Perhaps it might help to think about any male friends with autism that you know who might have special interests and how your interests might compare)
Would you ever consider your interests to be a coping mechanism in any situation?
Diagnosis
I'd like to know how you got a diagnosis of autism/ASD and what that was like for you.
When and how were you diagnosed?
What changed as a result of you being diagnosed?
How did you react when you received the diagnosis?
How did other people around you react when you received the diagnosis? (Think about family, friends, teachers reactions)
Have you ever used any strategies to hide your ASD? How would I know that you had ASD?
How would you know if someone did not have ASD? What is good about having ASD?
What about having ASD is difficult?
Do you think it is difficult for women to get a diagnosed with ASD? Why?
Friendship
Now I'd like to ask you about friendships
Do you have a friend?
Do you care? Is it important to you?
Could you give me an example of a friendship you have?
Do you find friendships satisfying?
What do you like about that friendship?
Is there anything about that friendship that you find difficult?
How do you know if someone is a friend or not?
If you have ever been involved in an argument or disagreement could you tell me what happened and how it was resolved?
Do you think there are differences between female and male friendships in people with ASD?
How do you think your views of friendship have changed over the years?
How do you think men with ASD find friendships?
Intimate Relationships
I'm now going to ask you some questions about intimate relationships. By this I mean boyfriends, girlfriends, husbands and wives. Some questions might make you feel uncomfortable. You do not need to answer any questions you don't feel comfortable answering.
Have you ever been in an intimate relationship?
Would you like to be in a relationship?
What do you think might be good about being in a relationship?
What do you think might be difficult about being in a relationship?
Could you tell me something about how being a relationship was for you?
What are the good things about being in a relationship?
What are the difficult things about being in a relationship?
Have there ever been times when you have felt at risk or taken advantage of by others?
Could you tell me what happened?
Do you think being taken advantage of is an issue that other women with ASD might also experience? What do you think this might be?
How do you think men with ASD find relationships?
I'd be interested to know if you think females with ASD might see relationships differently to men with ASD?
Sensory Sensitivities
I'm now going to ask you about sensory sensitivities: these might be sensitivity to sounds, textures or smells.
Do you have any sensory sensitivities?
What is good about having these sensitivities?
Have these sensitivities ever got in the way or been difficult to manage?
How do you think these sensory sensitivities help you?
Do you think there are any sensory sensitivities that are specific to women?
Do you think your interests might be related to your sensory sensitivities in any way?
Alcohol and Substances
Some people drink and take legal and illegal substances
Do you drink alcohol?
Do you use any substances? By this I mean legal substances like rescue remedy, paracetamol as well as illegal substances like ecstasy and cocaine)
In what situations might you find yourself using (any substance that the participant has listed)?
How might (name of substance / drinking) help?
How might (name of substance / drinking) be unhelpful?
Do you know if there are any substances that women with ASD might use more than men with ASD? Do you know if any of your friends use substances / drink alcohol?
If so, how might using (name of substance / alcohol) help?
Mental Health
People can often feel worried, stressed and depressed, including people with ASD
Have you ever had any mental health difficulties?
What are you like when you are (insert participant's answer, e.g. anxious)?
What makes you (insert participant's answer)?
How do you cope with (insert participant's answer)?
Do you think there are any difficulties that may particularly affect women with ASD? What do you think they might be?
Male / female differences
In this study, I am interested in whether there are differences between men and women with autism.
Many people, including researchers and people with a diagnosis say that there are differences between men and women with autism. You mentioned (insert an example given by participant related to male and female differences).
I was wondering if there are any other things you have noticed that might be different between men and women with autism?
What do you notice is different in your male friends with ASD compared to your female friends with ASD? What do you think is similar?
How do you think being a woman with autism might be different to being a man with autism? What do you think might be similar?
What are the differences between men and women's coping strategies?
What are the differences between men and women's strengths?
Summary
Are there any questions you have?
Are there any things we have not talked about that you think would be important for me to know with regards to your experience autism?