Disability Geography - Autism research

[Berushka]

Hi everybody! I hope this thread won't scare you away and you will at least give this text a try

My name is Eva, I'm 27 years old, diagnosed with AS in 2018 and I am currently a PhD student attending a Czech University (Masaryk University). Thanks to my diagnosis and my major I can focus on deeper understanding of living experences of people with AS. My field of focus is called "Disability geography", with my main focus being adult people with autism. In my surroundings I meet people who only care about autistic children, but not adults. I aim to at least acknowledge the existence of struggling adults and the situations, emotions and influences that these people (I and you) live everyday to the neurotypical society.

My master's thesis was focused on my own experience ("Disability geography: autoethnography of life with Asperger's syndrome"), however in my PhD studies I want to learn more about other people's experience. And to achieve it I must do the first step - which are interviews with autistic people (not necessary with AS, but it's preferable). And here comes a favour I would like to ask everybody who would read this thread. I have to learn of possibilities of ways of how to interview someone who is on the spectrum, so they would feel safe and comfortable. The thing is, I have my own preferences (for example being interviewed while going on a walk in an empty park), but I don't know what other means are considered safe and mostly comfortable by autistic people. So you would help me immensely if you could write me your own view on your perfect way of being interviewed. It can be really anything. From face-to-face (coffee shops, restaurants, taverns, park, city centre, your home, forest,...) to online forms (chat, e-mails, videocalls,...).

Every advice, comment, criticism or anything you would want to say or ask is truly appreciated.

Thank you very much! And even though you won't reply and only read, I hope you won't consider this a waste of your time

 

[Forest Cat]

Hello, as long as it's not done on the phone or videocalls, I'm ok with it.

 

[Berushka]

Hello, as long as it's not done on the phone or videocalls, I'm ok with it.

Thank you so much for your fast reply. So you prefer face-to-face (same as I do), and what kind of enviroment you prefer? Or you don't care where exactly as long as it not on the phone or videocalls?

 

[Forest Cat]

Thank you so much for your fast reply. So you prefer face-to-face (same as I do), and what kind of enviroment you prefer? Or you don't care where exactly as long as it not on the phone or videocalls?

If I could choose freely, it would be nice to be in my garden or in the forest. Or a park, somewhere nice and quiet. Maybe while making food, barbecuing. But it's not super important, I'm ok as long as I don't have to deal with phones or videocalls.

Is that a forest cat in your profile pic by the way?
Looks like Norwegian forest cat fur.

 

[Alexej]

Firstly, Hi and welcome to the Forums

Secondly to answer your question, my preference for how to be interviewed would be going for a walk and then continuing with a coffee in a coffee shop. Something informal and relaxed like that would work for me.

Having said that I would also say that I have had a 2 hour chat on a zoom type platform with somebody doing Ph D research and that was OK for me. The intention was for it to be a 1 hour chat, and at the one hour mark I was asked if I was OK to continue which was very respectful.

I do not know if there is a "perfect way" which is applicable to everyone, but if you only interview perfectly I suspect the group you interview will be small.

One more opinion for you to consider

 

[Telepath John]

Hello Eva,

My preference for an interview would be texting. The primary reason being it is the easiest way.

I am a 79 year old guy who has had many experiences related to the subject. We are all unique. In my case I am also deeply involved with the spiritual side of things. The autistic way of being is a subset of that.

John

 

[1ForAll]

As long as it is 1-1, I would not mind any method (phone, messaging, video chat, in-person), but it would have had to be some quiet and not loud environment, with nobody else to distract me, to create the most comfort and where I would open the most. The preferred would also be side to side talk, like yes, walking or sitting without direct facing. If it was face to face I would mostly look away anyway to concentrate. In my distant past my answer would be different, as then I would shun most interview requests that were not through writing only. I was way too insecure and self conscious then, and I would have been very brief and anxious then as my speech abilities and self-confidence was lacking much more then.

 

[Wolfnox]

I have actually been apart of a meeting with other autistic people. We met in a cookie shop. On the second floor alone with only the psychiatrist who arranged it.

 

[Luca]

Hi!

Since I have difficulty with verbal communication, I would prefer to do an interview in text/typed messaging, or in an email format. But I sometimes also get overwhelmed with typing or reading long paragraphs.

If the interview had to be in person, I would also prefer to go for a walk outside and talk, or sit in a quiet park or walk on a trail where there are not a lot of people. I'm very active and love the outdoors so I would prefer to do it outside.
I would prefer not to do an interview in a busy public space like a shopping mall or a restaurant.

As others have said, I don't like phone or video calls.

Hope this helps with your research!

 

[Ylva]

Textually, like a questionaire with room for small essays.

 

[Berushka]

If I could choose freely, it would be nice to be in my garden or in the forest. Or a park, somewhere nice and quiet. Maybe while making food, barbecuing. But it's not super important, I'm ok as long as I don't have to deal with phones or videocalls.

Is that a forest cat in your profile pic by the way?
Looks like Norwegian forest cat fur.

Oh, thank you! That's great, I actually heard that a lot, I mean the preferable place being in nature and somewhere quiet. In my field we normally do interviews in cafeterias or restaurants and I find it very chaotic and disrupting. My aim is to let autistic people feel comfortable behind the normative forms, so your answer is very helpful

It's not a forest cat, but you're very close! It's actually siberian cat, which is very close to looks and behaviour to Norwegian forest and Maine Coon cats. He's three years old kitten named Freddie

 

[Berushka]

Firstly, Hi and welcome to the Forums

Secondly to answer your question, my preference for how to be interviewed would be going for a walk and then continuing with a coffee in a coffee shop. Something informal and relaxed like that would work for me.

Having said that I would also say that I have had a 2 hour chat on a zoom type platform with somebody doing Ph D research and that was OK for me. The intention was for it to be a 1 hour chat, and at the one hour mark I was asked if I was OK to continue which was very respectful.

I do not know if there is a "perfect way" which is applicable to everyone, but if you only interview perfectly I suspect the group you interview will be small.

One more opinion for you to consider

Thank you for your answer! I'm doing a qualitative research, which is very hard to be applicable for everyone, that's true. That's why I also think it's important to ask for the preferable way of doing interviews the person beforehand. Because from my experience it's disruptive to be asked questions in an uncomfortable space and thus the answers could be different or not detailed as opposed to being in quiet and calm enviroment.

And thank you for your insight, it's very much appreciated!

 

[Berushka]

Hello Eva,

My preference for an interview would be texting. The primary reason being it is the easiest way.

I am a 79 year old guy who has had many experiences related to the subject. We are all unique. In my case I am also deeply involved with the spiritual side of things. The autistic way of being is a subset of that.

John

Thank you for you answer! Regarding texting, would you prefer rather e-mails or chat rooms or it doesn't matter? For me I like quite the opposite. Maybe I am weird, but I actually prefer to see and send body-language signals, that's why texting would be more confusing for me.

That's very interesting, I am more of "Sheldon Cooper" autistic person and I don't understand spiritual life at all (although I have an interest in slavic paganism). So I appreciate your answer, many things to reflect on

 

[Berushka]

As long as it is 1-1, I would not mind any method (phone, messaging, video chat, in-person), but it would have had to be some quiet and not loud environment, with nobody else to distract me, to create the most comfort and where I would open the most. The preferred would also be side to side talk, like yes, walking or sitting without direct facing. If it was face to face I would mostly look away anyway to concentrate. In my distant past my answer would be different, as then I would shun most interview requests that were not through writing only. I was way too insecure and self conscious then, and I would have been very brief and anxious then as my speech abilities and self-confidence was lacking much more then.

Thank you so much for you answer! I understand completely you mentioning being 1-1 and sitting rather side-by-side, I have the same feeling. I have a big problem with other people's expectation, like holding eye contact, sitting in "normative" way, answering at the right moment, not looking too weird for the interviewer and most preferably actually answering the right answers the person is asking me That's why I think either writing form or calm and quiet enviroment to talk is better. And anxiety is very common (I also have it, alongside mild depression), so the need for the autistic person to have as much comfort as possible is very important and for me as a researcher it's a priority.

Thank you very much for your insight, it's trully appreciated!

 

[Berushka]

I have actually been apart of a meeting with other autistic people. We met in a cookie shop. On the second floor alone with only the psychiatrist who arranged it.

Oh, thank you! It's interesting. I also thought about arranging a focus group somewhere in the future, so thank you for your commentary. And do you think it was better for you to open about yourself, being in a group with other people like you, or you would rather like more personal discussion with one person only? (You do not have to answer, if it's too personal question for your liking )

 

[Berushka]

I have actually been apart of a meeting with other autistic people. We met in a cookie shop. On the second floor alone with only the psychiatrist who arranged it.

Oh, thank you! It's interesting. I also thought about arranging a focus group somewhere in the future, so thank you for your commentary. And do you think it was better for you to open about yourself, being in a group with other people like you, or you would rather like more personal discussion with one person only? (You do not have to answer, if it's too personal question for your liking )

 

[Berushka]

Hi!

Since I have difficulty with verbal communication, I would prefer to do an interview in text/typed messaging, or in an email format. But I sometimes also get overwhelmed with typing or reading long paragraphs.

If the interview had to be in person, I would also prefer to go for a walk outside and talk, or sit in a quiet park or walk on a trail where there are not a lot of people. I'm very active and love the outdoors so I would prefer to do it outside.
I would prefer not to do an interview in a busy public space like a shopping mall or a restaurant.

As others have said, I don't like phone or video calls.

Hope this helps with your research!

Thank you so much! Your mention of being overwhelmed is very important, I didn't realize it, so thank you for that. I want to do the interview to the communication partner's liking, so knowing all these possibilities is very much appreciated

And if it's not too personal, may I ask you why you don't prefer phone/video calls? I actually feel the same and it's because I don't see the other's face and cannot react to the other's non-verbal signals...

You and also the others are helping me really very much, thank you!

 

[Berushka]

Textually, like a questionaire with room for small essays.

Thank you! Doing questionnaire with open answers is also an option, it's a possibility, indeed. And if may I ask, would you be free to do subsequent questionnaires after the first one? Because it's possible, that only one wouldn't be enough and for better understanding I would need more answers. (Don't worry, I won't send you any, just need better insight )

 

[Luca]

Thank you so much! Your mention of being overwhelmed is very important, I didn't realize it, so thank you for that. I want to do the interview to the communication partner's liking, so knowing all these possibilities is very much appreciated

And if it's not too personal, may I ask you why you don't prefer phone/video calls? I actually feel the same and it's because I don't see the other's face and cannot react to the other's non-verbal signals...

You and also the others are helping me really very much, thank you!

You’re welcome! I’m glad I can help!

Yes, it’s the same for me with phone calls. I don’t like that I can’t see the other person’s facial expressions or body language, so it’s harder to tell if they’re being mean or sarcastic or something.

I don’t like video calls for the same reason I don’t like making videos of myself. I don’t like how my voice sounds, and I think my body language looks awkward on camera. I also don’t like when people see what I look like, unless I know them pretty well.

The biggest issue for me with phone/video calls is that I communicate much better in text than I do verbally.

Hope this helps!

 

[Wolfnox]

Oh, thank you! It's interesting. I also thought about arranging a focus group somewhere in the future, so thank you for your commentary. And do you think it was better for you to open about yourself, being in a group with other people like you, or you would rather like more personal discussion with one person only? (You do not have to answer, if it's too personal question for your liking )

Well we all kinda had dominant personalities types. So spoke over each other at the first meeting. None of us really had anything in common. Aside from autism. We were completely different people.
One spoke more then the other one. The psychiatrist took us a few different places. But, we never connected really.