Autistic Peers

I’ve been banging on about Autistics needing Autistics for ages, but it was only when I went to the Speaker’s Day (you can read about that here), that I actually realised just how much.

I was talking about it with an Autistic friend at the weekend and she said, “It made me really angry. This is what we should have had. This is what socialising should be. This is what it is for everyone else.”

She was right. I’m angry too. Angry that I had to wait until I was in my late thirties before I could sit around a table with a bunch of virtual strangers, and not worry that I was missing something.

What was special about that table? It was round, that’s probably symbolic. Nicely Arthurian, no one was sat at the head of it. No hierarchy.

What was really special about it were the people. You see after the Speaker’s Day there was talk about not letting that feeling go. There was talk of meeting up again. There was talk of socialising.

I knew I wanted that. I also knew that arranging that sort of thing has never been my speciality. I like to be organised by someone who understands me. I like them to do all the tricky bit, so I can use my energy on the interactions.

But this time it was a group of people like me.

When we think about changing the world, it’s all too big. You can’t change people’s attitudes overnight, you can’t fix things in a day, understanding and awareness are a long and slow process. I often look to the small things to remind myself how far we’ve come, and how much we can change our immediate environment.

Those small moments when someone really gets it. When your mother, who is a tactile and loving person, says the words, “I want to hug you, but I know that will make it harder because you don’t like hugs when you’re upset.” When your friend adds, “Oh and when I say I’ll be there at 10, I’m always late, so I’m really saying I will be there at 10.15, I hope that’s ok.” When something clicks and people show kindness by doing things for reasons they will never experience themselves, that is no small thing.

So I did something that is very not-me. I got in touch with a few people I had only met for a few hours – only for snatches of conversations – and I invited them to come and stay at my home for a weekend.

I wrote a detailed invitation, then I sent it, and then I turned to my husband and said, “What on Earth have I done?!”

“You’ve made a start.” He said gently.

Then something even weirder happened; people said yes. Up until the last moment I thought I would lose them all, they would slip through my fingers like so much spilled Damson Gin. It would be one more social disappointment. One more failure. One more loss.

I did what I do, I prepared, I planned. One by one they appeared. In my little corner of Wales, a week of rain broke into sunshine.

Conversation covered zombie-apocalypse planning, yurts, social media, red kites, woodpeckers, acceptance, clouds, everything and nothing. We waded through the warm sea, found jellyfish, ate pizzas from the earth oven. Space was available to everyone at any time. Escape routes were all clearly marked.

Elderflower champagne bloomed and fizzed nicely, Damson Gin hit the spot. There was more laughter than tears, and the tears were all for the joy of what is and the loss of what should always have been.

They all took a big gamble on me. They travelled from far and wide, and they were all so easy to accept in my space.

I will mourn a loss. I will mourn not having that peer support all day, every day. I am so lucky to be surrounded by non-Autistics who are willing to listen to me, but it’s not the same as not having to explain a thing.

Luke Beardon has recently shared his talk here, in it he says this:-

It is true. It is all true. To quote a film I really didn’t get at all, “If you build it, they will come.”
It’s time to start building. Autistics need to socialise with autistics. We need what you all take for granted. We need each other.

Published by Rhi

30 thoughts on “Autistic Peers”

  3. That’s really beautiful. I will keep this in mind while I’m raising my son- to remember to help him find his people. Thanks for your blog.

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    1. Thank you. That’s brilliant. It’s incredibly important to be around people who don’t need you to explain, and have shared experience.

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  4. I’m in my late 30’s as well. I have hit a lot of the snags with socializing with autistic people online. Not being able to agree to disagree and being treated sarcastically on for sharing my Christian faith are two points. Older NT adults are the only part of the U.S. population, anyway, that “get me”. I grew up around people who were much older than I was. I thought when I learned I was autistic and got a computer, that I would find a place of belonging, but that has not turned out to be the case. I pray a lot about what my future will be. Will I have a safe place to live? Will I be able to contribute and socialize on a steady level? Will I have friends? Will NT and ND people alike accept my specific limitations of NO dogs or kids in shared spaces? Will they accept my ears?

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    1. It’s definitely about finding “compatible” Autistics. If one person is uncomfortable with the noise of another’s stimming, it’s never going to feel like a relaxing space. Sensory issues just add an extra level of difficulty.

      I’m sorry you’ve had the experience of not having your faith respected.

      Safe spaces are important for everyone. I’m not sure I’ll ever socialise in a consistent way; I usually go through bursts of activity and then see no one for ages. Which suits my energy levels.

      I have found older autistic women to be mostly very kind and thoughtful, but I know that’s a very small sample that I’ve found. I do wish I could find someone compatible nearby. I truly hope that all your prayers are answered with a yes 💐

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  7. It sounds like you had a lovely experience. I’ve often wondered what it would be like to socialize with autistics. I’ve never had the opportunity, but I think that way I would find out very quickly if I’m one of them or not! I don’t want a support group, which would probably be only for diagnosed people anyway, and maybe not even for adults, but just a couple of people to talk to in real life. Maybe one day I’ll meet them. I’ve had some really nice interactions with people online, so I’m happy about that.
    Off topic, but I really loved the picture of the jellyfish. I think jellyfish are beautiful. I’m going to the seaside in August, and I’ll be sure to see some there – most common are moon jellies, but you see some compass jellies as well.

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    1. Jellyfish are brilliant. I love their structure and movement. I was wondering if anyone would spot what it was.

      I’ve only recently had the opportunity, and yes it’s not a “support group”, it’s socialising. Just being in company where the natural style is autistic and masking is not a requirement. Online interactions have great value too.

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    2. @autisticaplanet As far as i can tell, most autistic-run organizations are accepting of self-dx. I know my support group is (unfortunately I’ve rarely been able to see them) but you won’t know if you don’t have a look around and ask!

      Everytime im in a group of autistic people, even near-strangers, i realize how much more comfortable i am around them than neurotypicals, more than my dancemates even, who I’ve known for years and am very fond of.

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  8. This was beautiful, and made me well up. The moment when I first sat in a room with a group of Autistic people was a moment when something major clicked in my head. I could have cried, but I was too busy being excited and extremely flappy and hyper. As I was diagnosed at 23, I always had this fear, even after diagnosis, that I would find myself in a room of ‘proper Autistics’ and be revealed as the imposter I was. But that didn’t happen. I butted heads with some people, and some others I wouldn’t necessarily spend time with again, but there was a huge sense of ‘getting it’, of knowing to respect each other’s quirks and limits and sensitivities that just isn’t there in non-Autistic circles. I too have many caring non-Autistic people around me, who really do try their best to help us create the best environment, but this was something different. In particular, an experience I had in which myself a three other Autistic women were taking part in an event; we chatted, we sat in silence, we didn’t make eye contact, we flapped, and when a non-Autistic person came to speak to us briefly and we all snapped into ‘masking’ mode, we all noticed immediately and had a lovely moment in which we all acknowledged just how deeply we could be ourselves around each other.

    Social media has also been really important for me in getting in touch with other Autistic people, but I don’t know if that is a generational thing. I know I am fortunate to have been a mid-teenager when social media began to flourish, so grew up with it. Some of my strongest and enduring relationships with others have been online with people I met in forums, and who I see only a few times a year. The woman who actually convinced me to chase a diagnosis, who identifies as Autistic but is undiagnosed, is one such relationship. The other people I have such relationships with I am convinced are also Autistic, but have yet to breach the subject with them. On the other hand, social media is something I am very selective with, as sometimes it can be extremely damaging and the views and personalities you can be exposed to are deeply disrespectful and toxic. I’ve made wonderful friends who respect my boundaries and my limits, and who I can create a safe space with, but I have also been badly burned. It’s a fragile balance I’ve had to create out there in the world wide web.

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    1. You’re right, social media is a double edged sword and can be amazing and awful. I love all the relationships I’ve developed online, but I do find I need to ration how often I’m on social media, or it does start to drain me.

      Completely empathise with your sudden-masking moment! It’s amazing how easy it is to see it in other Autistics.

      Thanks so much for your comment 🙂

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  11. This is such a beautiful post. I just graduated high school and in my high school we have a program called Integrated PE which is where we worked with the special ed students during gym class. I was in that gym class for two years and those students absolutely changed my life. There was so much joy in that class and it always cheered me up!

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  12. What good fortune! Congratulations! I used to use to facilitate social activity. Quitting those coping mechanisms wrung out my friend pool. A spectrum pool,,,hmmm… I’m going to have to sit with that set of social anxieties for a while to avoid judging and automatically avoiding and just honestly consider. Now that my kids are grown, I’ve gotten used to being alone a lot. As a teacher, I get plenty of social interaction at work and need time to recover. But a group of fellow spectrum…. I’m unsure of whether to run screaming or sneak up and watch until I can peep up.

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  15. Thank you for such a lovely post. What a wonderful thing you were able to do, to have that meetup! I am recently diagnosed last week (I am 27), it has been an overwhelming process and over the years I have gotten so used to feeling incredibly panicky in social situations. But I hope in time I will be able to find a support group of other people on the spectrum that I can connect with, too. 🙂

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    1. I very much hope you find your own group 😊 don’t forget that just like everyone else, you won’t necessarily have anything more in common with some people than your autism. Finding compatible people is a wonderful thing. Sometimes it takes leaving your comfort zone, and sometimes it doesn’t pay off. There are many of us on social media too 😊 which is often my favourite method of communication (@outfoxgloved on twitter).

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    1. It’s amazing how you give voice to my most private thoughs and worries.
      “What on earth have I done” hahahaha, been there before.
      So many losses and disappointments, so much anger for not having that…. reading your words is cleansing my soul.

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