If you identify as disabled and are 18 or older, you are invited to participate in a research study conducted by Arizona State University! The goal of this study is to better understand how individuals began to identify as disabled and what the identity means to them personally. Participation involves a one-on-one 60-minute interview with a disabled researcher. Interviews will be conducted over Zoom, and participation is voluntary. Participants will be compensated via email with a $20 USD Amazon gift card at the end of the interview. Send a message for more information.
ALT Text: Disability Pride Flag with Text reading: "Interested in furthering research on Disability Identity? If you identify as disabled and are 18 or older, you are invited to participate in a research study conducted by Arizona State University!
I personally cherish the term "spoonie" and the spoon theory, but god almighty it's not a requirement for every disabled person. Disabled people can identify however they want, whatever makes the most sense to them. It's no one's business and no one's right to police what we choose to call ourselves.
Do you have any tips for making friends as an autistic adult?
Thank you so much for sending this in after I deleted the first ask, it’s really awesome of you and I really appreciate it! 😁 I looked online for articles and guides to making friendships. Here are the autistic adult-specific resources I found:
A guide for autistic adults on making friends and socialising.
This one has some interesting tips, though they might not all apply to you because they’re based on someone’s experiences. It’s a linear guide which I appreciated:
You might want to make new friends, but aren’t sure how to do it. This article for teens with autism can help.
This is not necessarily going to have good info in the article because I just skimmed it so I’m not sure. I included it because it has a lot of links and resources which might be helpful. Asan is listed in it and I don’t support asan because of their racist actions:
For Autistic Adults: Meeting other people on the autism spectrum and finding community.
This article has many different strategies for making social connections as an autistic person. Also if you find images helpful it has very cool illustrations, but they are completely not required to understand if that doesn’t work for you. This is my favourite of all the resources I found:
Being autistic in a neurotypical world can feel like being dropped into the middle of a foreign culture. Non-autistic customs can be difficu
I also researched beyond the category of autism to making friends as a disabled adult and found some cool stuff. Also if you’re multiply disabled this stuff might address other things you encounter:
This is an article about making friends from a disabled adult’s perspective:
Here are a few places I found for virtual connection:
The Hiki app is a friendship and dating app for autistic people over the age of 17. I’ve never used it but a quick search showed me mostly positive reviews.
This is support and social groups for autistic adults for free. It appears to be current but I’m not 100% sure. TW it uses the term aspergers:
Adults - Support Groups & Community Connections Sessions – The Asperger / Autism Network (AANE)
There’s also meetup.com which I have no experience with but is recommended in a few things I read:
https://www.meetup.com/topics/autistic-adults/
Find over 26 Autistic Adults groups with 4701 members near you and meet people in your local community who share your interests.
My perspective
For advice I have, find environments where the social structure is comfortable for you. My example is that I like sports and can feel comfortable in athletic settings if I’m not triggered. Primarily though, don’t de-value yourself as a person people want to be around.
Autistic people often face a lot of messaging that affects self image and esteem in regards to friendships and relationships in general. Give yourself respect and grace, that stuff is really hard when it’s internalized so remember to call yourself on it. 💗
Also @through-thick-and-quinn you and I have had a lot of exchanges on here and you’re genuinely one of the kindest people I’ve ever met, I’d like to talk whenever, and consider you a friend.
This week, as term ended, I was at a two day workshop/conference on research ethics with regards to illness narratives. It was one of the most varied collections of people I've seen - from my fanfiction work to someone studying human remains - and yet we all had so much in common and so much to discuss.
Something that got talked about quite a bit was the issue of disclosure and positionality. For many of us in the medical humanities, our positionality in relation to the illness(es) we're studying is considered important. It's integral to my thesis. But other researchers expressed that this was hard for them, because they actively did not want to disclose their health status. It's especially awkward with some illnesses - consider those dealing with things like infertility, with STDs, with something like urinary or digestive issues.
I completely agree that no one should be forced to disclose their health status as part of their research, even though my positionality is a fundamental part of my own. There's parts of my health I don't talk about! Even still, I had an instinctual feeling of defensiveness when it was brought up, and I spent quite a lot of time thinking about why that is.
My conclusion was this: for me, disclosure is a radical act. I have two sides to my disability, the chronic pain/fatigue side and the mental/neurodivergent side. Both sides are things that I have been taught (primarily by ableism) to repress. I'm a woman, so my pain is dismissed. I've had instances in the past where people have told me to stop sharing my emotional distress, because I was being too depressing and no one wanted to hear that much of it. There is a near constant voice in my head saying that I should not take up space, be seen, express my pain.
By centering my experience, by talking about that experience, by allowing it to exist out in the world, I am - essentially - giving a giant fuck you to that voice. To the ableist world that thinks that I should vanish into nothing, and the parts of my Madness that parrot that. In a way, it's the very thing I did in response to the chronic and traumatic bullying I experienced as a child: being more loudly, more proudly the very thing that they said I was.
People should absolutely choose whether to disclose things or not, be that in research or in general. I believe this wholeheartedly. But we need, also, to recognise the rebellion inherent in disclosure for many disabled and Mad people. To acknowledge how brave it is to shout your existence into a world that tries to eradicate it. To hold space for both disclosure and non-disclosure, and everywhere inbetween.
Grateful for the workshop & participants giving me the thinking space to process this, the inspiration for the realisation, and also Alice Wong for Year of the Tiger, which I was reading alongside this and helped me process it a lot too.
I hate the position I'm in regarding calling myself disabled regarding my physical abilities. I have autism, ADHD, chronic pain and fatigue so I consider myself disabled, but when it comes down to my actual physical abilities, I hesitate. Because of chronic pain and my hypermobility I can't just do things like abled bodies people, but I'm not disabled enough to really consider myself physically disabled. It's more of a general disability feeling. I have to think of my body and it's abilities way more than any abled bodied person, but if I don't disclose all my issues, nobody can tell because I can do most everything that an abled bodied person can do. So I am actually physically disabled? Or do I just experience chronic pain and some limitations?
I'm thinking about this because so many people have back problems, authritis, etc, and they don't consider themselves disabled. At what point does a person "get" to call themselves disabled and they stop being abled bodied?
(everyone's different and I tried to word this and put "" since everyone has the right to identify as they see fit but this is a general question I would love to see people's opinions on. There's no black and white "you're disabled or you're not" in many cases especially when you're young and have similar issues to that of an older person who wouldn't be considered disabled, just old (if that makes sense))
One of the key approaches of my thesis as a whole is the relevance of my identity as a Mad researcher. Part of wider approaches within disability studies, neurodivergent studies and Mad studies as a whole, it's the "nothing about us without us" idea that research into the experience of Madness should be led by those who know what it's like to experience it. This is especially relevant since I am studying the very affective side of things - what it feels like to experience this.
Today whilst doing my ethics writeup for my supervision, I was going through my notes and found a quote from Matt Hills about autoethnography's capacity to examine the algorithmic experience of fans - and/or the meta level experience, going beyond just the reading and writing of the artifact (which is what gets focused on a lot because we do love having an artifact to research).
Which just made me jump in delight because it makes the structure of my thesis so perfect. I've taken inspiration from Ria Cheyne and Ebony Elizabeth Thomas in the structure of my thesis - which I can ramble about in more detail at some point, but the key thing for right now is that each of my chapters has both a media type and an aspect of Madness that it focuses on. My video games chapter was on delusion, disorientation and dissociation - my fanfiction chapter, meanwhile, is on mood and emotion.
So how perfect is it that not only am I researching mood and emotion, I'm doing it in a field that really sets you up for positioning your own emotional experience as a researcher, in a wider field (med & health hums) where researcher identity is also powerful and relevant. I'm in awe of both my own brain and the world sometimes, that I can instinctually know things are connected and then dive into it deeper and find all the ways how. That'd be the power of feeling, topically.
It's timely because I'm in a period of autistic and disabled burnout right now, and that's meant that I'm really struggling to both experience and regulate emotion. I also had the realisation that often what *I* do as a fan is dump really heavy, emotional things into a fanfic and then never feel anything about them again. Every time I go back to read my own works I am astonished by how much feeling they inspire both in me and the people kind enough to comment. So the idea that my feelings, no matter how complex and sometimes hard to access they are, could be this important - it's really lovely.
Anyway. I love my research. A lot. This has been a nice feeling to round up the bulk of my work for the day.
