Sunday, September 27, 2015

#Autchat: Six Months of Showing the Diversity of Autism.

Note: For those who want to be able to jump between sections more easily, I made an indexed version as a Google Doc; the link is here.

Introduction / What is #Autchat?
Approximately six months ago, on February 4th, 2015, a group of autistic activists, myself included, decided to start a Twitter hashtag for autistic people to talk about autism from our own perspective. The next Tuesday, February 10th, the first #autchat session was held.  It has been held on Tuesdays since, from 6pm-7pm UTC for the past six months.

In those six months, autchat has had over a hundred participants total, and up to ten or fifteen people per session. autchat sessions have had lengths of six hundred tweets at times, with the average being closer to three or four hundred.  It has grown considerably from the small gathering of autistic minds that started it, so much so that we created a Google Docs page for information on it so that people can read it without asking us, which can be found at  autchat has even gathered the attention of a reporter for the Washington Post, who interviewed two of its creators for the neurodiversity article that was recently posted.

However, autchat never made it into that article.  Even so, one does not need to be employed by a periodical to make an article; the only thing that is needed is the desire to write and people to interview.  To that end, I decided to make my own article, especially with the semi-annual celebration on August 11th. I gathered my questions, asked for participants, and got quite a few responses.  The feedback for autchat has largely been positive, which was great.  In total, six autists aside from myself have responded to my interview questions.

Finding Autchat

The first question I had asked was how people found autchat.  Aside from the creators who were interviewed (Myself and @theoriesofminds; the other creators did not request to be interviewed,) most of the people who answered had discovered autchat shortly after joining Twitter; it had already been well established at that point, with weekly sessions well-known to the regular participants.  Some, like @tuttleturtle42, found it through the existing participants, as they note:

“When I first joined twitter, I was adding primarily autistic people. Early on, Twitter suggested  to me @theoriesofminds. I saw the end of an #autchat and was really confused about what it was at first, but figured out how twitterchats work after seeing people talking about #neurodiverseSTEM.”

#NeurodiverseSTEM, for those who have not heard of it before, is a similarly moderated Twitter chat about neurodiverse people in the academic fields of Science, Technology, Engineering and Mathematics, commonly referred to as STEM.  It runs on Thursdays from 7pm-8pm UTC.

Of course, one does not need to have been aware of other Twitter chats to learn how #autchat works; as @autistictic states, sometimes the participants themselves can be helpful:

“I just recently started out on twitter. I was not involved in social media at all until about two months ago. The first thing I did was look around for other autistic people. I followed some of them on twitter and one day the #autchat hashtag just started appearing in my feed.
At first it seemed a bit mysterious and I didn't quite understand how it works. But all I had to do was post a question with the hashtag and I got all the help I needed directly from the participants!”

A Community for Ourselves
The common theme appears to be autists looking for community amongst themselves, and autchat provides an excellent means of that: an organized and timed Twitter chat where fellow autists can speak about their experiences.  In fact, for some people, autchat has been their introduction to the autistic community as a whole.  Stella notes this in her response to my second question, wherein I ask “How have your interactions online with the autistic community changed since participating in autchat sessions?”  She responds:

“Before participating in #autchat, I had no interactions online with the autistic community so it changed everything for me. Thanks to #autchat I have made friends, have exchanged about topics that interest me related to autism, and I’ve been able to share experiences and feel that other people could relate.”

People have reached out to each other and made friends through autchat as well.  Kitty responded in such a manner, stating “I have bonded better with other autistic people online.”  For some autists, it’s easier to have a more personal connection and have confidence when communicating through computer screens than in face to face conversations.  @princesshannyx notes this in her response:

“I now have a group of Twitter "friends" who all share my condition and we help each other in difficult times. It's also so helpful for checking whether what you feel is shared by anyone else or if you have had the same experiences as other people. I don't know anyone who shares my condition personally so it's really nice to have people who understand and I can speak to confidently as it is over a computer and not in person.”

The Perils of Publicity

Of course, for some people, the interactions may not really change; after all, even though autchat is a safe space for autistic people, it is still a public forum, as @tuttleturtle42 adds:

“It's probably actually where I'm watching where I'm saying in regards to being autistic most, because I know some people will look back at what I've said. Most of my interactions are in places where there aren't publicly available logs online like there are here.  However, that is only things like "Oh, actually I personally might want privacy in the future", nothing beyond that.”

Confidence through Community
For some, autchat has made people feel better about being autistic.  @autistictic notes that autchat is one of her first experiences being around other identified autists, which gives her the confidence to be more openly autistic herself:

“There are people there who relate to me. And I relate to them. That doesn't happen with the non-autistic people I know offline. I am not ashamed about anything when talking in #autchat. I feel accepted which makes it easier to learn to accept myself as well.

I have learned a lot about the different traits of autism, the problems and challenges that come with it, and all the different ways other autistic people deal with them. That has given me many ideas to try myself. Since I grew up without a diagnosis and surrounded by only neurotypical people #autchat is my first time getting support at all. There is lots of help and advice in practical things there as well.”

Of course, some people had already reached the point of self-acceptance before even stepping into autchat.  For them, there’s not necessarily any way to feel better about being autistic than they already do.  When asked if they felt better about being autistic since participating in autchat, @tuttleturtle42 replied, “No, sorry :( But that's because I haven't felt bad about it. I think it is a good place for others to do this, who have had to deal with that.”  Stella gave a similar remark to the question as well: “I didn’t feel bad about being autistic before participating, but I did feel lost and confused. Now I feel I have a support network of people like me who are supportive and friendly.”  Even for those who have already accepted that being their autistic selves is a good thing, autchat seems to be a place to find that peace of mind that we need to understand the world and ourselves better.

Open for Guests

One of the things autchat does is have guest moderators; if someone has a particular interest in leading a discussion on a topic, they can ask one of the lead moderators to be a guest mod for that topic, and have an autchat session assigned for them to host.  I took the liberty of asking the guest moderators some questions about their experience.  The first question I asked was “What Inspired you to guest mod a topic of Autchat?”  Stella responded, “Theoriesofminds asked if anyone was interested and I thought it would be a good experience to be behind the scenes. I picked a topic I was particularly interested in.”  

In my own experiences, when I moderated a topic on food, I did it because I had a history with eating difficulties, both with celiac and sensory aversion to lettuce and lily/nightshade fruits.  I wanted to corroborate with other people and both share my experiences and compare them to others.

When Stella first moderated her own topic, she didn’t have any expectations going in; when I asked her what she expected, she replied, “I wasn’t sure what to expect. I wanted to not just ask the questions but also try to respond to people and carry conversations. I was a bit panicked about forgetting to switch questions, and scared they wouldn’t elicit replies from people.”

I then asked her if it was any different than she expected, with her response being “It was much more fast-paced than I expected! Apart from that, everyone was absolutely lovely and encouraging.”

One thing I learned to do in my own moderation of revisited sessions is queue the questions in advance so that I can focus more on watching the session than worrying about when to post it; that way I can reply to questions or participate in topics as I need to; it’s a lot easier that way.

When I asked Stella what she wanted to tell people who might want to guest mod a topic yet but have not done so yet, she was quite enthusiastic:

“Do have a go! Everyone is nice and supportive, and you get to ask questions about a topic you are interested in. The templates are all ready to help you and the process is streamlined so you don’t have to worry too much.”

I would agree; I’d also add that you can easily use an app such as TweetDeck to schedule the question posts and intro/outro well in advance, so you can spend your actual time as an autchat mod viewing and contributing to the peoples’ posts themselves.

On Origins and Expectations 

Next, I interviewed theoriesofminds on the experience of being an originator of autchat; when asked on how the idea for autchat came about and what led to its creation, this was the response:

“Answering these both together since they start with the same answer: Lots of good conversations with autistic friends, and wanting to keep them from scrolling off our TLs and disappearing!

Here's where it started for me, when I asked if people would mind if we started tagging things and you and BKBTKR said you'd be up for it: and

It was just after this conversation and some other ones the same day:

After I asked for thoughts on topics and tags you suggested you try making a list: I think you made a general autism activist one first and an autchat participant one later.

Here's the first #autchat tag suggestion:

I drafted a google doc the next day and invited interested people and we did planning and scheduling and had our first chat on February 10th.

We didn't start the actual autchatmods account until the end of June and it has >100 followers already!”

In my own experiences, I was having a similar idea at the time; the conversation was growing too full of mentions to say anything meaningful, and I was thinking it would be a good idea to use a hashtag or similar shorthand for the group so that we could put more information on each tweet.  Of course, theoriesofminds had come up with the same idea and stated it first, so I simply added my enthusiastic agreement and volunteered to help in whatever means I could.  It was refreshing to know that the idea had not originated in my brain alone.

When I asked about the expectations for autchat at the start, once again I found that our thoughts on the matter were similar:

“I wanted to have a hashtag so we could record and find conversations better, and preserve some of the content that would otherwise disappear off our TLs. I don't think I thought about the future much. I'm really pleased it's still going strong, and that we've not only had an autchat every week but have expanded to having chats twice a week.”

My expectations were similar, to be a (relatively) small chat where we could talk about our own experiences.  I certainly did not expect it to be as big as it had been, but I’m pleasantly surprised.  The expansion to twice a week, for example, was due to the massive surge in popularity autchat had seen recently; I wanted to give even more people a chance to discuss things, and to revisit topics that they may have missed before.  We were both surprised to see the growth of autchat over the months, but it’s been good to see, as in the response to the question “How has autchat compared to these expectations in practice?:”

“I didn't think it would grow as much as it has, or get as much participation! I'm really happy that people have made friends through the tag...I checked analytics the autchatmods account, and we've averaged 208 views per tweet, for tweets that weren't aimed at specific people. That doesn't necessarily mean 208 people are reading the tag on average, since some of that is from retweets that people see on others' timelines...but still, we're getting a lot of exposure!”

The Importance of Mentors

The respondents in general seemed to unanimously agree that the autistic community is a better place for having autchat.   This is good; I imagine some people may disagree, as there is always a dissenting opinion in any endeavor, but to know that the massive majority of contributors think we’re better off for it is great.  Many have added their reasons for this belief as well.  @tuttleturtle42 notes,

“I think we need things like autistic mentors, and I think we don't have that yet. I think that things like #autchat take some of the places of what mentoring gets us, while also providing autistic socializing.

#autchat gives us the ability to discuss topics, sharing what we know, and learning from others. It gives us the opportunity to say "these are things about autism that I've learned about", and "these are things I want to know more about", while also listening to others sharing more coping skills that we can learn from, their experiences, that we can relate to, and more things that mean that we aren't alone. It's a way that we can learn and can recognize ourselves in others when we are feeling like we are ending up unable to relate to others because of how different they are time after time.

It's a place where people with more knowledge can give it to people who are just learning about autism, and those people with more knowledge will still be learning from others, not be limited to teaching. And it's done online, where we don't have to struggle with all this in-person stuff. We just need to struggle with 140 character counts, and twitter being far less accessible than it thinks it is.”

Autistic mentors are definitely a thing the autistic community needs; it’s a large part of why I came onto Twitter in the first place, because I started as a mentor locally.  All I had growing up was my own mother, and I wanted the next generation to have more people they can look to for advice.  I’m glad autchat can be that  for people.

Intersections and Diversity 

Of course, mentors are not the only reason autchat has been an improvement for the autistic community.  Intersections and the showing of diversity are ideas expressed in autchat as well.  As theoriesofminds states: “I think our trans and women/ppw chats were enlightening in particular; I wouldn't have expected as much overlap as trans/nb and autistic people that I now think there might be. I think all of our chats have contributed to helping individual people form a community, but I think those suggested interesting things about a possible high rate of trans/nb people that I had previously heard very little about. I hope someone will see it and decide they should do a population survey!”

Unconditional Acceptance and Support

The unconditional acceptance autchat tries to foster, especially of those who are either self-diagnosed or recognized by their community, seems to be another reason that people think that the group makes the community better, as @princesshannyx states:

“Autism can be very isolating as you want to interact with people and just can't figure the whole thing out. With the autchat community it brings us together as the autistic community without the worry of body language, eye contact, idioms and tone of voice (not to mention sensory overload). When I participate (or even if I just read) I feel a part of something that doesn't mind if I'm high functioning or having a meltdown or having a good or bad day. I'm accepted for who I am as me; not for what anyone else wants me to be. I can behave naturally; not in a socially acceptable way. And I learn so so much about myself and the condition. People have ideas that I would never have thought of that could help me enormously. I also like to think I can or have helped people with my own ideas and experiences.

Thank you for autchat. It really has changed my life. Suddenly I'm not alone any more.”

Safe Spaces in Public

Of course, as stated earlier, Twitter is a public forum; while the autistic community is the primary audience of autchat, the larger world is still able to see it.  In that vein, I asked people what they wanted the people outside of the autistic community to know about autchat.  The response was fairly unanimous: That autchat should be respected as a safe space for the autistic.  @Autistictic’s statement of such is quite clear:

“#autchat is for autistic people. I am worried about non-autistics taking the hashtag away from us like they take so many other things to be honest. I feel safe during autchat sessions and I really don't want non-autistic people there as that would mean I can't feel safe anymore. #autchat discusses very sensitive topics so be respectful.”

Stella expressed a similar sentiment as well, expressing a fear of invasion of the HT ny the non-autistic if it were advertised for them to watch:

“I’m torn about that question because I want #autchat to stay special, and I worry that those outside of the autistic community would suddenly try to invade it. It hasn’t been the case so far but it is a fear I have! But putting those fears aside, I would want them to know that we are here, and we support each other, and we are not just a list of traits and symptoms. We are human beings, all different, and #autchat shows that clearly.”

Closing Remarks

The diversity in something like autism, which most of the media perception seems to portray as these cookie-cutter stereotypes of either the geeky introverted engineer or the completely mute autist with little to no executive function is important to know, and which is why I, for one, am glad autchat has been around to show that diversity in our community.

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