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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 Slight smile

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 Slight smile

  • Dear Barushka,

    Thankyou for posting on the online community. This thread has now been locked as it breaks rule  9 of our online community 'requests for research study subjects and surveys need to be directed to research@nas.org.uk  for data protection and research ethics reasons. Further information can be found on our research pages. Please be advised that any requests for research subjects or surveys posted on the Community will be deleted without warning.'

    Please contact research@nas.org.uk to formally request  your research is promoted on the online community.

    If you have any questions, please contact communitymanager@nas.org.uk  

    Kind regards,

    Clare Mod

  • in reply to Berushka

    PhDs play to autistic strengths, it is a pity that school and undergraduate study are so hostile to neurodivergent people. I have a PhD, but in molecular parasitology.

  • in reply to Untoward

    Thank you very much! And would you prefer some kind of questionnaire (with a possibility of having subsequent questionnaires, since it's be probable that I'd need to ask additional questions), or rather chat/e-mail exchange? And also that means that you'd still prefer face-to-face communication rather than via phone/video calls?

  • in reply to Mariusz

    Aww, thank you so much! Actually, I am one of the few (in the world actually, currently I am the only one in my country) who are targeting adult autistic people since almost nobody seems to acknowledge them. Most of articles talk about children, but few actually care about what will happen to those children once they grow up. And the neurotypical logic is true - if you don't follow the normative time and space, you are weird and you don't follow the political idea of a perfect citizen (my perspective is something called "crip temporality", amazing book was written by Alison Kafer "Feminist, Queer, Crip", that states that the percieved future as it is now is not about disabled people, but this is wrong. We aim to include us, the disabled, into political discussions). And my aim is to shift the view to the adult ones, who actually have to go to work, have to earn money and live an houses, have a family, etc. otherwise they are thought to be weird (and in the extreme cases to be sent into asylums). If they have seizures, "weird" reactions to oversensitive hearing/seeing/feeling, they do not deserve to have "normal" life and they will have a tragic end. I am only a little drop of water in the ocean, but I hope to start at least some discussions in this field. (If you are more interested, I also aim to shift from "medical model of disability" via "social model of disability" into something made by Kafer - "political model of disability")

    [Comment removed by Moderator for breaking rule 9 'requests for research study subjects and surveys need to be directed to research@nas.org.uk  for data protection and research ethics reasons. Further information can be found on our research pages. Please be advised that any requests for research subjects or surveys posted on the Community will be deleted without warning.']

  • My preference would always be the written word. I struggle to articulate verbally and especially in person.

    If it had to be in person, I would need a lot of prompting. You would get mostly monosyllabic yes/no responses and my immediate urge would be to escape.

  • Hello 

    It is a noble cause to spread awareness among indifferent people, who wouldn't be bothered otherwise.

    Neurotypical 'logic' dictates: As long as everyone pretends there is no problem, everyone would avoid addressing it. If it's right in front it can no longer be avoided. 

    So, someone has to break through first.

    Good luck.

    The more data the more accurate the findings.

    So, you can send me a questionaire as well. I would prefer to answer them in writing.. 

    Btw. I'm from Poland, and I live in UK for 14 years now, I was diagnosed autistic in September 2021.

  • in reply to Martin

    Same for me.  I like bit of time to consider (and even reconsider) a question so that I can give my best answer and also there is less pressure.

  • in reply to Martin

    Thank you very much! And sorry for asking further, is it because you can think in advance for responses (aka you're not pressured into answering right now and you don't have time to think about answer properly?) or you feel safer behind the monitor or you're not confused by body language...? (or you don't have to answer, if it's too personal for you :) ) I actually think that most people would prefer online/written space, indeed. That's why I might be weird, because I don't like online spaces at all and I prefer face-to-face, because I'm afraid that the other person wouldn't understand my spoken lines and I'd use my body language to explain better Smiley

  • in reply to DaveAsperg

    Oh hello! I am not using or citing literal answers here, not promoting this website. In that case contacting admin would be understandable. Also I am not looking for doing interviews here, I am gathering as much insight into preferable means of communications for people with disabilities on autism spectrum. So this is really only for my information only Slight smile

  • in reply to DaveAsperg

    Yes, but this is not research as such, not setting up formal interviews or advertising a website for responses, it is merely asking for opinions.

  • there are lots of students trying to do research on this website, but you need to get permission from the admin first 

  • Online or by email, but definitely written in preference to any type of spoken communication. I have a clinical diagnosis of ASC.