Friday 24 January 2020

Circle of Friends

When our daughter moved up to Junior stage of her mainstream school (in the UK this covers age 7-11), the local autism advisory service suggested to us and to school that a Circle of Friends could be put in place for some support for her. At the time we didn't know much about it but we found out that this was a well-researched method of promoting healthy friendships and creating and reinforcing positive social experiences. The idea was developed initially in North America but for some reason adopted more widely in the UK; it was found to be particularly helpful for autistic children who had trouble developing social and communication skills. Much more detail on how these groups are set up in practice can be found via this TES link.
Group of friends hugging
Saying goodbye to her friends at the end of primary school
Sasha always wanted friends. In fact her sociable ways were partly what helped us to stumble across descriptions of Pathological Demand Avoidance initially, as this seemed to be at odds with most descriptions of autism that we'd heard back when she was diagnosed ten years ago. Of course since then we've understood more that every autistic child is unique and that there are far too many generalisations floating around about autism. Still, appearing sociable on the surface does seem to be a common trait of all those with the PDA profile of autism.

One aspect of Sasha's life which I know affects her adversely is the lack of friends. She did have a great group of friends who all looked out for her when she was at her mainstream school but their lives have obviously gone in a different direction to Sasha's. A direction that Sasha would still like to be going in even though she knows she can't manage it. She doesn't want to be different but she knows she is, and so, here we are. Since May, home without a school and home without friends.

Today has been amazing though. Sasha has had a smile on her face all afternoon. That makes me happy.

The reason why? Friendship. Interaction. Common interest. 

Sasha loves playing a variety of Nintendo games, along with old faithfuls Minecraft, Roblox and Sims. She's 12 now but has never really got into playing online with other people and I was always grateful for that. Neither girl was interested in Fortnite which I was also extremely grateful for, having heard the tales of woe from other parents. Her older sister has played Minecraft with Sasha a lot over the years but those opportunities petered out as eldest hit teenage years and was less interested in playing herself (who wants to concentrate on Minecraft when you can have the instant and repetitive hits of TikTok?! But that's a post for another time...). 

We're lucky that Sasha hasn't really become addicted to gaming - I know that can be an issue for lots of children, especially autistic ones who find transitions difficult. She does like it, a lot, but manages to self-regulate (often with YouTube, I've covered that in an earlier post on my blog) and will change things up herself, sometimes playing with kinetic sand, or creating art or Gacha videos. 

Since being off school last May, Sasha has become more and more bored of being at home. She struggles to get out much because of her anxiety over a variety of things, but also she doesn't want to be taught anything by me. I can't home educate her because she's not receptive to it; I'm mum, I do everything else for her. I've tried lots of different ways to get her interested in learning, but it's tricky. So we end up with a Catch 22 situation - she gets bored of doing the same things all the time but struggles to do anything new.

Anyhow as I said, Sasha does cycle through different activities herself though and over the last few days she's gone back to playing Splatoon on her Switch. Possibly because that's one game where she does play online with other players. But it's the same old game and she'd rather push boundaries and do new things with games.... She suddenly decided that she desperately wanted to play Splatoon with someone else, someone she could talk to rather than a faceless person somewhere else in the world. A friend.

I chewed it over for a while and then decided to take a plunge. I 'advertised' in our local Facebook groups for a friend for Sasha, with very specific requirements. Somebody who had their own Switch, could play this game and who was at a decent standard - Sasha gets very frustrated by people (i.e. her family) not being as good as her when playing games. She wants to be challenged, to play others at her own level. But... she doesn't like to lose. So I was tempted to add into my 'friend advert' that the friend must be able to lose graciously - something Sasha rarely does herself! I thought that might be taking it a step too far though so I crossed my fingers and hoped we could figure that bit out when it happened.

Amazingly, in response to my request that I wasn't at all sure was a good idea to post, I got a few replies. And I managed to hook Sasha up with two other children who also like to play Splatoon. They all clicked online at the right time and went on to have loads of fun. They were thankfully all of a similar ability so there was just the right amount of challenge and no falling out, phew!
Splatoon game shot

One girl, one boy. Sasha was able to converse with them directly via phone message (there was a little bit of background helping to get this all set up by the parents also messaging!). I was amazed with the amount of detail in this text message Sasha sent to explain her ideas - this from a girl who says she hates reading, doesn't write and rarely even types.
text message talking about a game idea in Splatoon

I think it helped a lot at our end that Sasha was in control of the games; she was the once who could decide who played who, in what environment. She may have struggled if someone else was calling the shots, especially for the first time. But this way, she was even able to choose to sit back and simply watch the action at times too, showing an unusual amount of patience. It all worked well, and my heart did a little happy dance this afternoon.

Friendships are so important, for the vast majority of children and adults on this earth. And yet so tricky for many to navigate also!

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?

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  1. Oh how lovely. I’m sharing your joy. This post is exactly my reality with my PDAer right now. First ever video gaming friend visiting for a gaming play date tomorrow. My son is 6. Friend is 9. It’s a really big deal for us (but of course we’re keeping calm so as not to create any kind of demand!)

  2. Great post on friendship and challenges of schooling. I really like your daughter's video. What a great autism awareness tool as well as a good means of self-expression for her. I would love to know how she learned to do the animation. I have recently heard of an organization in the U.S. that works online with people to teach them animation. A former student of mine has done some cool things too.

    1. I think she gets all her best ideas from YouTube :) Her animations are made in an app called Gacha Life x

  3. Heartwarming to read about this successful online playdate. Impressive that Sasha could express her ideas so well in the text message. My son has no desire to socialize with others his age, which is a big worry for us, but he does seem to enjoy going to the video game club at school. Hope Sasha can continue to enjoy these interactions.

    1. Thanks - I don't think all children need or crave friends in the same way, but Sasha definitely does :(


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