Autism Acceptance Month 2018 Day 4: C is for Community

BSL: community

C is for Community

When you are part of a community, you feel welcome, accepted, that you belong.

There are many different types of community and you can belong to many simultaneously. I belong to the following communities: autism, autistic, Catholic, democratic-socialist, Harry Potter, folk, Deaf, roleplay, fanfiction, Exeter University, my local (geographical) community, disability, football (soccer for you non-Brits!) and probably a number of others!

Growing up not knowing I was autistic and that was the reason for my social exclusion and my sense of being different from those around me, I struggled to feel a sense of belonging. I felt that sense most strongly in things I chose to do or be involved in, such as the folk community as I grew up in that, and then as an adult I discovered others, such as the Deaf community; I did not so much feel part of the community at school as many of my classmates picked up on my difference and excluded me.

Once I realised that I was autistic, my perception of myself changed, and I began seeking out autistic groups on Facebook. And the sense of welcome and belonging was incredible! Last year, to mark 20 years of Harry Potter, I wrote a post about the parallels between that and discovering the autistic community, which you can find here.

Since then I have become very active in the autistic community, where I feel very welcome and included. I've made some amazing friends there, people I have not yet met in person (but hope to in future), some of whom I've been working hard with on various campaigns (the NotLockedIn one last year and currently the StopTheShock one to, at absolute minimum, get the Judge Rotenberg Center to stop using torturous electric-shock practices as behaviour control, the petition for which you can sign and share if you have yet to do so), and I have found and been able to contribute so much support.

Autism
In the context of autism, there are multiple communities: the autism community and the sub-group of the autistic community. Some people belong to one but not the other, and others belong to both.

The autism community
This consists of autistics and those who come into contact with autistic people within the context of autism and/or have a personal connection with an autistic person - so the shop assistant who helps the autistic person find an item in their shop is not part of the autism community on that criterion alone (although if they are autistic, or have an autistic friend/family member, that is different and does make them part of the autism community). It is a wide community comprising many different groups of people.

It includes parents, siblings, children and other family members of autistics. Some of these people may choose not to engage with the autism world and thus may decline to be identified as part of the community.

Clinicians, such as psychologists, physiotherapists, occupational therapists and speech & language therapists (often abbreviated to SALTs here in the UK) who assess, diagnose and work with autistic children and adults, are part of the autism community.

Other members of the autism community include support workers, therapists (including counsellors, etc, because many autistics have mental health problems), teachers of autistics, autism researchers, those involved in the creation, design, development, manufacture and promotion of products that improve autistic lives (such as AAC), autism organisations and, miscellaneous allies, such as close friends, could potentially fall into this category.

All of these can be either beneficial or detrimental to autistics - ASAN (Autistic Self Advocacy Network) is a beneficial organisation, whereas Autism $peaks and TACA (Talk About Curing Autism) are firmly in the "detrimental" camp. It is not always easy to ascertain which an organisation is.

The autistic community
This consists of those who are actually autistic. Many of us include the self-diagnosed in the autistic community - it is not always possible for someone to obtain a clinical diagnosis, for a variety of reasons, and others do not want a formal diagnosis (again, for a variety of reasons). Not all autistics are willing to include the self-diagnosed because they do not consider them to be "real" autistics, but as someone who went several years as only self-diagnosed due to the difficulty obtaining an assessment as an adult, I know how difficult that can be and so I do include the self-diagnosed.

The image below is something I put together today to go with this post (may tweak positioning of words a little at some point so that it is more aesthetically pleasing, but it's 9:40pm and I want to get this post completed). It is not in-depth and is meant to be a general guide rather than necessarily an absolute.

30 Days of Autism Acceptance: Day 7

#30DaysofAutismAcceptance

Day 7:      

Talk about community.  How are you treated by your local community?  Do you participate in any online communities?  How have they reacted to you being autistic?

I’m part of several different communities. Where I live, we have a community on the little estate where we live (it was once a council estate; some of the flats are still council, others are privately-owned and some, like us, rent from private landlords) and on the whole it’s really nice. We’ve got good neighbours and I really like living round here. Sunday before last, we really saw the best of the community because the shed attached to next door’s flat went up in flames. It was fairly terrifying, because the shed was only about 5 metres from our flat and fire is my biggest fear. Fortunately it was the middle of the afternoon so it was spotted quickly and a whole load of the blokes on the estate, including Gideon, just grabbed buckets and anything else they could, and ran back and forth between a couple of the kitchens that overlooked the shed (and those residents just flung their kitchen windows open so people could refill the buckets more easily) to try to put it out while we waited for the fire brigade to arrive. Thankfully only the shed was damaged and there’s a small scorch-mark on the wall where the shed was; it could have been far, far worse (such as if it happened in the middle of the night – our entire building could have gone up). It was a pretty horrible incident but it was great to see our little community pull together, deal with the incident, make sure the fire brigade was called, ensure everyone was out of the building and was OK. 

I’m Catholic (towards the more liberal end) so I’m also part of my church community. There are two Catholic parishes where I live and I actually go to the church that’s further from me for a number of reasons, not least that I find the Sacred Heart community much more open, friendly and welcoming than the other parish, which I find very reserved. I find introducing myself and meeting new people quite difficult in a lot of situations because I’m autistic – initiating conversation is really hard when in order to do so you have to make eye-contact with someone but you find it practically impossible to make eye-contact – and I just found it impossible in the other parish; there, the onus is on the newcomer to initiate things socially and I just can’t do that. At Sacred Heart, people see someone they don’t recognise and strike up a conversation and are really warm and friendly; I felt part of the community immediately. I’d like to be a bit more active in it and I’m going to become one of the readers soon, which I’m looking forward to. I’d join the music group but there are already about 4 flutes in it! One of our long-term goals is to be much more Deaf-friendly so there’s a strong chance that I’ll be liaising with the priests regarding signed masses, which is really cool! People at church know I’m autistic, and I’m happy to discuss it, especially if it leads to greater knowledge, understanding and acceptance. I’m not the only autistic in my church community – there’s a family with an autistic lad who’s 8, and I often chat to his mum about all sorts of things, including autism. As far as I’m aware, everyone at church accepts me the way I am and it’s just generally a really warm, welcoming, friendly community that I’m very pleased to be part of.

I’m also very definitely part of the autistic community, both online and in my local area. I mentioned in the Day 4 post about support that I’m part of the local NHS adult autism service’s group, and I do find it useful. There’s something particularly liberating about being with a group of my peers, where you’re not having to be so careful about how you phrase things and so on! I tend to be less involved with the wider “autism” community; I haven’t really thought about why that is but I think part of it is that I don’t have the energy to deal with the Autism Warrior Parents – on the occasions I have stepped into that pool, I’ve been shouted down for using identity-first language and being told that because I’ve done XYZ (university, marriage, I speak, are the big ones) I’m not really autistic.

I do think there’s a difference between the “autistic” community and the “autism” community, and the autistic community is, from my perspective, a subgroup of the autism community – the autistic community consists of those of us actually on the spectrum, whereas the autism community encompasses a wider group of people connected to the condition, so family members, partners, friends, professionals, support services and other allies. It’s a distinction I’d be interested in looking into further. Oh heck, is that another PhD possibility???

I’m part of a number of online communities, and I really value it. It’s particularly important to me these days because my physical limitations mean I don’t get out anywhere near as much as I used to, so having that connection with the outside world, with friends and people with the same interests, conditions and so on, really does help me feel part of the world. I’ve made some fantastic friends online, including Jenna and Katharina, who I’ve mentioned before, as well as a number of others.

Another advantage of the online communities is that I find less pressure to respond to things immediately, if at all. I don’t have to react to everything I see, and people generally don’t mind if I don’t (if they do mind that I haven’t responded to something, they haven’t said anything!) With online things, I can come back to them later when I’ve had a chance to think about them, whereas when you’re face-to-face you’re expected to respond immediately, which can sometime be too much and I can’t process it properly. I’ve not had any particularly bad experiences or people taking issue with me because of the autism, at least not to the best of my knowledge – not that I can think of right now, at any rate.

I know some autistics aren’t really fussed about engaging with the wider world, and that’s fair enough, but I like to (though I still need “me” time) and I can generally do so at my own pace. Community is important for all sorts of things, including self-esteem, social skills, relationships and for an opportunity to be yourself; supportive, autistic-friendly communities are essential, and don’t be afraid to cut ties with those that are harmful to you.