by Nanny Aut
My entire childhood I never felt I belonged anywhere, despite my best efforts to fit in. I even secretly suspected I was adopted because I had so little connection to my family. They never saw me, all they saw was flaws to fix and correct. And I craved that connection.
It is tough enough struggling to get your brain to do what it was never designed to. To try and figure out a world that just doesn’t make sense. It is made much worse by the fact that you are trying to do this on your own, that you know no-one out there going through what you are.
For me, one of the worst things to face when you are struggling is the belief that you are on your own. That no one else is going through this. Just knowing that there are people out there like you, even if they are not in a position to help, makes a huge difference.
Online, we see parents of autistics group together to share their distress and fear, to share solidarity and (often) bad information and we see autistics group together to share solidarity and (sometimes) better information.
And we see parents face up to the discomfort of autistic-led spaces in order to hear about the experience and the needs of their child from adults who share the same experiences and needs as their child does. But that space is often uncomfortable for them because they are in the minority.
For many of them it is the first time they have experienced this – the first time they get to see what it is like to not have the privilege of being in the majority. And I applaud them for having the courage to stay and learn. Because I know that feeling of discomfort – it is something I have had to live with, with no choice, for all my life.
Online communities are great for autistics because it gives us a chance to connect and communicate in a style that is comfortable for us. But it doesn’t provide the closer connection for many of us that having a community in real life (IRL) does.
However, IRL it is a lot harder for autistics to find other autistics – current statistics say that the ratio is currently 1 in 44 – which means you have to meet 44 other people before you get to meet another autistic. And socialising with the majority is hard work – that is a lot of small talk you have to wade through before you finally come across someone else who only prefers big talk.
Add to that discrimination, which means we can be excluded from a lot of environments where others socialise – work, social groups, even hobby groups, where you would think our special interest would buy us entry, can fall foul of the majority’s hostility to difference.
Add to that the fact that many social environments are hostile both for sensory and processing. Too loud, too busy, too many perfumes and aftershaves. Too many confusing and contradictory social rules. So we aren’t in any positive frame of mind to socialise, if we even choose to go at all.
Add to that the need to mask, so we can be hiding in plain sight – so a masked autistic may fail to connect with another masked autistic if the mask is good enough. We may even actively avoid people we suspect are similar to us in case those around us spot the connection and shut us out.
Add to that the constant hostile encounters we have had from others since kindergarten. It doesn’t exactly inspire you with confidence to get out there and meet new people.
The odds aren’t good at all.
This is why we need more events like Autscape in the UK. And for those events to be better funded and supported than they are now.
It would be fair to say that Autscape changed my life for the better. And significantly so. Until I went I had no idea how powerful an experience it would be to be able to meet and mingle with other autistics.
I had just received my diagnosis with very little information about what to do next. I was being bullied and discriminated against on my course and I was still believing that their hostile behaviour was all my fault. But I had no idea what to do about it, how to fix myself. I had spent well over forty years trying to fix myself and nothing worked.
And in my online research I came across Autscape. A conference for autistics, run by autistics. Here I might get the information I needed, from people who had lived with their diagnosis longer and who may have better fixes for themselves than I had in my toolbox.
Even though the thought of going somewhere that I knew no-one terrified me, especially as my anxiety was already sky high, I figured I could go along – skulk at the back and keep out of everyone’s way. So I signed up.
When the information pack arrived I realised that this was going to be very different to any conference I had been to before.
It talked about sensory needs, socialising preferences – accommodations to make the conference as accessible as possible for everyone. Not accommodations you had to apply for – accommodations as a matter of course. Some of the key ones for me were:
- No electric hand dryers in the toilet
- A request for attendees not to wear strong perfumes
- Clear maps and images so you could orient yourself in advance of attending
- Even red, orange and green cards you could put on your lanyard so you could indicate your level of comfort with socialising with others.
- A sensory room you could retreat to whenever you needed it
If you had other accommodations you needed you were encouraged to let the organisers know and they would do their best to meet your needs.
When I arrived, I was a nightmare to deal with – my anxiety was through the roof, so my processing lag was worse than usual – the basic instructions had to be repeated several times before my brain registered them. And instead of the usual sigh and eye-rolling that this usually receives, I was met with smiles and warmth and understanding. They understood it was overwhelming and wrote the information down for me – even underlining bits in the program for me so I would find them easier later.
At coffee, one of the regular attendees made a point of coming over to talk – straight into the deep stuff – How long since my identification? – How was I coping? – Was this my first time meeting other autistics? – before sharing theories on how our mind works – how it was always intended to work. As I was highly anxious, I started talking copiously, loud and fast. It was clearly uncomfortable for the other person. However, unlike my usual experience where the listener would suffer in silence, this time they just put their hand up and said ‘It’s been really interesting talking to you and I hope we can do it again, but your volume and speed is a bit intense for me right now, so I need to leave to regulate. See you later.’
And the next time they saw me, they made a point of coming over and chatting. And because by that time I was calmer and less anxious we were able to have a much more reasonable two-way conversation. And a key reason I was less anxious was because I knew I didn’t have to try and guess her comfort levels – she would tell me straight up. I got to see how powerful being unmasked and using self-advocacy could be. Not just for the person self-advocating but for the people around them.
That week felt like I was coming home – people who got me – people who struggled like me – people who communicated in the same way that I did, who socialised in the same way that I did. No guessing what the rules were, no fear of getting it wrong – just natural, normal interaction.
When I was invited to join a game, and I said I would prefer to watch, it was accepted at face value – no urging me to ignore my needs – no attitude. I could watch and interact at my comfort level and feel included while remaining safely at the side. Even though I didn’t play the game, I still felt I belonged.
People looked out for each other, respected each other, accommodated each other – it was a genuinely supportive community where autistics were in the majority and for a few days, this conference made a world that fit our needs. All of a sudden I wasn’t the outlier, the misfit – I was normal, my way of being was natural and very much ok.
And the talks and the events taught me so much about how my brain works, about societal attitudes, about how to survive and thrive in the outside world. It was the first time I learned about what meltdowns really are and how living in an environment that doesn’t meet our sensory and processing needs causes trauma from a young age. That my anxiety and depression could well be the result of a highly stressed nervous system not a chemical imbalance.
Over and over, I got to hear about the autistic experience from autistics and was shocked at how much their accounts differed from the NT professionals who had stigmatised and pathologised everything about me. Suddenly a world that had made no sense for so long came into clear focus. My brain was buzzing with all this new information and there was never a shortage of other autistics who I could process it with.
It changed my life – I realised how much I had been gaslighted and started to advocate for myself. I started to make a conscious effort to look after my needs, to rediscover stimming, to explore what my sensory profile was.
It finally gave me permission to be me – not because I was too tired not to mask – but because, like everyone else in this world, I deserved to be seen and accepted just as I am – no hiding.
I now make a point of attending at least once every two years – it is the best break from NT world that I can find. And each time I go I get more out of the experience, participating more in the fun stuff as well as the educational. Every time I go, it gets bigger and better, but the focus is still on creating an environment supportive to autistics. On creating a supportive community.
I am so excited to be able to attend this year, after the event having to be online for the past few years. It is going to be bigger and better than ever and the organisers have worked extremely hard to make it a positive experience for attendees. Including setting up bursaries in order to help fund attendance for those who could not otherwise afford it.
Of course, Autscape is not the only autistic-led conference in the world, and is not the only gathering where autistics are in the majority. There are autistic social groups (look for ones that are autistic-led, not ones run by NTs designed to teach NT social skills). There is Autistic Pride, where autistic groups gather on June 18th. There are online communities and outstanding groups like Spectrum Gaming where young autistics in the UK can socialise with other autistics who share their passion for gaming.
However, all of these chances to meet up and socialise with other autistics are so beneficial for our mental well-being. They give us the chance to realise that we are normal, that our way of being is natural – it just isn’t the same as the majority’s. To realise we are acceptable – no fixing needed – we are just misunderstood.
To realise we belong.
Autistic Pride is on June 18th – look to see if there is an event going on near you. I will be going to Autistic Pride Cambridge in the UK – but there are events being run all around the world.
There are still places available for Autscape this year if you would like to attend. Monday 8 August – Thursday 11 August 2022 at The Hayes, Derbyshire.
If there are other IRL autistic meetups around the world that you would like to mention, please put them in the comments below.
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4 thoughts on “The Power of Community”
Thank you for this article! It’s such a great point. Could you recommend any events or places to socials for neurodivergent children in Sydney, Australis please?
A good place to start would be the ICAN network https://icannetwork.online/
I grew up always knowing I didn’t fit in, but it didn’t matter when I was a child/teenager and lived in my home area. I was just accepted ‘don’t worry about her, she’s just like that.’ But when I moved out into the world, I became ‘the weirdo’. Misunderstood and mocked. Now I live in a tiny village, I’m excluded completely. I’ve managed to make 2 friends in 20 years! But hoping to move away soon thank goodness.
Your experience is so common in our community and it can be hard to maintain the knowledge that it is them not us, when there is so many more of them. But genuinely, the issue is with their fear of difference and not with our differences. I have learnt over time to focus on quality not quantity and to actively seek out ND-heavy groups to connect with.