Disability Geography - Autism research

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Berushka
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Joined: 18 Apr 2022
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18 Apr 2022, 10:55 am

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 :)



autisticelders
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19 Apr 2022, 7:40 am

I am so happy to see you here!
There are many of us on this board who are "late diagnosed".
I was diagnosed at age 68, although I was pretty sure I was autistic for several years before that finding diagnosis for old women was very difficult.

We( you and I) share interests and agenda, in that it has become my goal to raise awareness of autism in the elderly ( for sake of clarity, I mean those of us who were born before 1980.)

I write a blog and run an autism forum (admin/moderate) and participate in several other groups, this being one of my favorites.

Only 2 years after diagnosis, I am still trying to sort out my past 65 years (before I knew about autism) I am 70 right now.

I found the process of learning about the nature of autism, the ideas and politics, the scams, the history, and the general nature of how our different neurology works in us, the problems we might have, accommodations, and all the rest of those details was very time consuming.
I thought there should be a place where people discovering their own autism or newly diagnosed could learn about it in "one place". I have my facebook forum page, and I have my blog where I attempt to provide information about autism in the older adult.

I try to tell about what I am learning about my autism and about being old ( they go together in my world/life) so people can come to one place, see they are not alone, and learn more about ways they can help themselves through self understanding.

There are others on this board who are doing this sort of thing too. Perhaps they will contact you as well.

Glad you are with us, please send me a PM to have more interactions.

Thanks for your interest and your support of older adults with autism.


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autisticelders
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19 Apr 2022, 8:44 am

I have very poor sensory processing and feel I communicate best using email or text in situations like this, where there is plenty of time to understand and respond without feeling pressured, especially when being asked questions. The sudden questions of others with expectation of immediate response sometimes makes me "lock up" ( selective mutism due to anxiety) I find it difficult to have conversation face to face or while doing other things. Much of what I see and hear does not process well, I have difficulty reading tone of voice, facial expressions, body language because what I see and what words I hear sometimes seem to be in conflict. That is confusing. Safest and most effective communication for me comes in the use of written /typed communication in forums such as these. Even messenger services or text communication in "real time" is too fast. You will find each of us is very different. Perhaps you could consider asking each individual you want to interview what works best for them?


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"Curiosity is one of the permanent and certain characteristics of a vigorous intellect.” Samuel Johnson