Inaugural Exeter Autistic Pride event!

Today I (as Autistic on Wheels) hosted the inaugural Exeter Autistic Pride event! It was a casual, low-key picnic on Cathedral Green, and the weather kindly held off (it was trying to rain initially). It was a fairly last-minute decision to do something (just under two weeks ago) but for a new event, simple was definitely better. Most attendees were autistic, and there were family members and friends too, and even a spaniel who was very well-behaved around all the food! Some were old friends, others were new friends and people I'd seen around online but had yet to meet in person.

We talked about all kinds of things. Autism was a prominent topic, rather unsurprisingly, but other things were also discussed and chatted about, and it was really nice to be with so many lovely people.

It was a great day: really friendly, welcoming and relaxed, with no NT social pressures or demands. I made the flags you can see in the photos (gold infinity symbol on a purple background) and people brought loads of food to share.

Next year I'd like to do something a bit bigger and more formal. In the meantime, we're thinking about doing something socially on a more regular basis.

Autism Acceptance Month 2018 Day 20: S is for Social Media

BSL: gossip/chatter (bottom row, middle clip) + media

S is for Social Media

This one links in nicely with C is for Community, F is for Friendships, J is for Justice and tomorrow's T is for Technology.

You often hear people bemoaning the alleged detrimental effect social media has had on our communication skills, our relationships, our mental health, and so on, and you do have to be careful because that can happen, especially because social media can give a skewed presentation of people's lives. There are plenty of things I don't post about on Facebook and I'm sure that's applicable to most people.

But social media can also be an exceptional tool and massively beneficial, which is what I'm going to write about today, particularly focusing on its role within the autistic community and the striving towards autism acceptance.

Before social media (Facebook, Twitter, YouTube, Tumblr, Reddit, Instagram, etc) existed, it was more difficult to stay in touch with as many people. I personally only use Facebook; I've considered Twitter (as Autistic on Wheels) but I find it moves too fast, there can be too much information, too many responses and rapid reactions, and it's too overwhelming for me. I may experiment with it in the future, I may not. Facebook is a great way for maintaining contact with people you might otherwise not; I have on my personal Fb a number of people I was at secondary, and even a few at primary, school with. I'm a writer; people and their lives fascinate and intrigue me. And we live in a world where people converge and then part ways; wanting to stay in contact in such a fast-paced world, especially when you meet so many amazing people, can be challenging, whether your life is busy with activities from dawn till dusk, or it's rather more slow-paced. My health issues, particularly that fatigue- and brain-fog-related aspects, mean I am at home a lot of the time, so it's harder to stay connected with the wider world and not feel lonely and isolated. Social media enables me to stay connected and feel involved in the world, even on the bad days when I can barely manage to make a cup of tea. I can chat with friends on Messenger, I can stay informed about what is going on in people's lives, I can keep up-to-date on events and I can do "armchair activism" (a term often dripping with derision when said by many, but it's increasingly powerful and much more accessible for the marginalised of society than going out on the streets). One of my absolute best friends lives in Iowa (we originally met through a Catholic community on LiveJournal; since connecting there we've visited each other 3 times, and her parents have informally adopted me as a third daughter). She's 6 hours behind and several thousand miles away from me, but we talk often and love each other as sisters.

It was also a lot harder to connect with people you didn't know in real life, face to face, even if they were members of the same community as you, such as the autistic or Deaf communities, members of whom are disparate, dispersed throughout the world mixed in with neurotypical or hearing people. I do sometimes accept Facebook friend requests from people I've not met in person, but we do have to have interacted on some level in groups and so on prior to connecting directly - I don't just accept requests from random people! I have quite a few people on my Facebook friends list who I have not met in person, although hopefully eventually we will meet. I am planning to meet Ann M in person later this year when she comes down to the West Country (and introduce her to the delights of the Lyme Bay Winery), and I also hope to meet many of my fellow activists.

Social media has revolutionised how disparate communities come together and connect. In the past, my contact with other autistics (what some of us call our "neurosiblings" - I quite like that term) would have been largely restricted to those who lived locally to me, with perhaps one or two from slightly further afield, perhaps a couple of counties over. Now, though, we can connect from all over the globe! I regularly interact with autistics in many different countries, including Iceland, Brazil, Singapore, the Middle East and others, and am Facebook-friends (and interact directly) with autistics in Canada, the US, Sweden, Australia, New Zealand and Ireland. Possibly one or two other places as well. And I have found some amazing, fantastic people in the autistic community, people I would never have met if it wasn't for social media. Ditto for several allies who have become friends.

It's also a great way for autistics who use alternative communication methods and high support needs to be part of the community in a way that they might not otherwise be able to, and for parents/family members and autistics to come together and advise, inform and support. That said, there are many toxic groups and pages out there, so you have to be extremely careful where you go, because of the Autism Parents™. It's absolutely fine (and healthy!) to be highly selective about where you spend your time and which pages you follow. When I come across an autism page, the first things I do are look at the language use (if it's solely person-first language it puts me on alert, as it's unlikely to be run by actual autistics) and, most importantly, which pages are Liked by that page. If there's anything relating to Autism $peaks, Light It Up Blue, TACA or other cure or pseudoscience organisations/people, that's a big Nope.

And social media isn't good for just meeting other autistics; it can be a great way to converge, organise, plan, campaign and spread our activism. Longer-term followers of AoW will know that I was one of the key players in the Not Locked In counter-campaign to Caudwell Children's Locked In For Autism stunt, which took off rapidly and successfully last year. That came about solely through social media - we met through a UK autistic-and-neurodiversity group, an article about one of the events came up, and autistic hyperfocus went into overdrive! We mobilised on the Thursday night, and by Friday morning had a discussion group on Facebook, a Facebook page, the Twitter profile was reactivated (there were previous unsuccessful efforts to end LIFA) and a petition calling on Tesco to withdraw. The other two handled the social media and press side of things while I hammered out goodness knows how many emails, and by the Monday afternoon Tesco had pulled out. All this was done through social media. More recently, I've been one of the main three organisers of the petition against the Judge Rotenberg Center, which has in the last few days, thanks to ASAN's involvement, rocketed from around 4,000 signatures to over 14,200 when I checked a few minutes ago! Thank you everyone and keep signing and sharing it! Let's END this torture! Again, all this came about through social media, through a group of autistic activists that I'm a member of - one of our members was at the ADAPT protest outside Scott Gottlieb's house and posted about it, I enquired about whether there was a petition or anything that those of us outside the US could sign or otherwise show support for, and within 48 hours, Cal, Kieran and myself had finalised the petition and activated it.

Social media has enabled us to come together and connect, to support each other, to discuss and spread ideas and campaigns, to work together, to form a network across national borders and oceans, and create a distinct community that was previously diffuse and fragmented. And for that I am overwhelmingly grateful. Social media has made a massive positive difference in the lives of many autistics around the world.

Apologies if any of this lacks coherence (please do let me know and I will endeavour to edit it) but circumstances conspired to ensure that I only got about two and a half hours' sleep last night, and I spent several hours earlier today at an event for increasing Deaf people's participation in physical activity in Devon that I'm looking at getting involved with, so this has taken me rather longer to write than originally anticipated. The lack of sleep means it's taking me twice as long to think coherently and then type accurately (tiredness always exacerbates the dyslexia symptoms), and the event earlier means I'm still partially thinking in another language (BSL)!

Autism Acceptance Month 2018 Day 7: F is for Friendships

BSL: friend

 

 Image from http://www.british-sign.co.uk/british-sign-language/how-to-sign/friend/

F is for Friendships

Some autistics want friends; others aren't that bothered. Both are fine, as long as the person is happy with whichever category they fall into. Sometimes we can have difficulties making friends because many people pick up the fact that we are different and a lot of NT society has a long list of unwritten and frequently-changing rules that can be overwhelmingly confusing for us. When you have a friendship with an autistic person, please be clear - make sure everyone is on the same metaphorical page by discussing boundaries, conventions, perferences, what is and isn't comfortable, expectations and so on. I'll do an in-depth post on forming and sustaining friendships with autistics at another point.

One of the best bits about autistic friends is that we rarely engage in deception and fudging the truth - if you ask us for our opinion, you'll get our honest one! (Yes, there will always be exceptions; I've come across some very manipulative and deceptive autistics.) A couple of my friends love going clothes shopping with me because they know I'll be blunt about the outfits they're trying on! 

I often find myself being quite careful around a lot of NTs (though less so these days). Not so much my friends because they know me and they know I'll be blunt! And being around my autistic friends brings out my bluntness even more but that's fine - that's just the autistic-culture way. People are sometimes shocked at how direct I and my friend Katharina are with each other, but we're not being cruel or anything, we know that's not the intent, so it's all perfectly fine. She's one of my best friends and I love her dearly.

I spend a lot of time at home on the computer, partly because it's where I do a lot of my advocacy/activism work, partly because I do a lot of fiction writing (and research for my writing) and partly because my physical health problems mean that I often don't have the energy to go out and do things (but please don't stop inviting me!) Yes, I spend a lot of time on Facebook (again, part of that is because it's a big part of my autism work and also due to my role as secretary for the larp club I'm in) - it's often my biggest connection to the outside world. I chat to friends quite a bit over Messenger, and one of the things I love about interacting with friends that way is that it doesn't require the use of speech (which can go a bit wayward when I'm tired/stressed), so I can make myself understood. And if the conversation just stops, that's fine. If someone has to go off and answer the phone/run an errand/something comes up and simply doesn't respond, or it happens to me, there's no upset or hurt, nobody thinks they've done or said something wrong, because we all understand that sometimes life happens, and we just pick up where we left off.

I've made some amazing friends through social media, primarily Facebook as I don't really use any other platforms (I probably should get onto Twitter but the pace of it and the risk of misunderstandings due to only being able to deliver short soundbites both unsettle me and there mere thought overwhelms me). A lot of my autistic friends are people I know through Facebook are people I have yet to meet in person, but we chat pretty regularly (particular shoutouts to Ann M, Ryan H, Alexis R, Cath and Kajsa!) and I look forward to one day actually meeting them. There will be more about this aspect of friendships later this month in S is for Social Media.

Autistics tend to be a lot more comfortable than NTs when it comes to sustaining friendships online. Many of us need alone time and a break from "peopling", have difficulties going out (sensory, psychological and physical) and struggle with conventional communication. While many NTs love going out to busy pubs or cafés to interact with friends, a lot of autistics find such places difficult or even impossible to navigate, with the multiple, often loud, noises, uncomfortable lighting, mix of smells and aromas, food issues and uncertain social conventions and expectations, to name just some. Online friendships can be much more comfortable and manageable for us, and as long as these are safe and healthy, there is nothing wrong with that - and can be really beneficial for us, allowing us to maintain and develop friendships in a way that we might well not be able to if we were forced to do it under NT circumstances.

Sometimes it can do us good to broaden our experiences with trying new places and so on but we may not always be able to cope with it on a given day, so be patient with us; at the same time, if you want to keep our friendship, respect our boundaries - if I tell you I can't socialise with you at a venue (even if I don't explain why), understand that I have my reasons and they are valid. It might be the acoustics, the lighting, the layout, the lack of an accessible toilet, the ten steps up to it and no lift/ramp/etc or something else. I am thankful that I have many friends that respect and accept that.

Having friends has made life much better. I like having autistic and NT friends. They respect my boundaries and needs, and I theirs. 

I have some amazing friends from many different parts of my life and I love them all. They accept me the way I am and don't try to change me into being more NT. I can't be friends with people who pressure me to suppress my autistic traits and interests, just to fit in. Even before I knew I was autistic, back when I was merely aware that I was different, although many people were cruel to me, I had some fantastic friends who were there for me in the darkest days and encouraged me to stay true to who I am. Particular shoutouts to Caroline T (formerly B), Carol H, Catherine, Alison C, Julia, Hannah B, Hettie, Tammy, Joanna, Nicola J and several others. Also a special shoutout to Jenna in Iowa, who I originally met through an online Catholic community and is one of my absolute best friends and surrogate sister.

I should probably write more but this is overdue anyway and I'm really tired so I'm going to finish at this point. Thank you, all my friends, for accepting me for who I am and not trying to stop me being my authentic, autistic self!