Thursday 23 November 2017

Communication via YouTube

Sometimes I wonder what other people might think about me allowing communication via YouTube. I'm talking about the leaving of comments on other people's videos, something which Sasha does fairly frequently. Bear with me as I try to explain why this feels like an achievement for us.....
Sasha watching YouTube
Even when another device is in use, YouTube is constantly on in the background here. Anyone else have this?!

Sasha's level of communication is not quite in line with that of her peers. That's a very simple way of trying to state quite a complicated state of affairs.

Sasha had delayed speech when younger, which was why we requested a speech and language assessment when she reached the age of two. After that appointment we were referred on to a paediatrician, which is when we received the diagnosis of autistic spectrum disorder (ASD, now often referred to as ASC, autistic spectrum condition).

Sasha made plenty of noise as a baby and toddler but was slow to form the sounds correctly as words. Even now, her speech is slightly unusual; that may not be obvious instantly though, as she's not keen on long conversations anyway. Her speech sounds are mostly good, though she still struggles a little with 's' and 'f'. We've had very little speech therapy along the way but that's a whole other story.

The main issues now for Sasha tend to be mainly around communication and expressing herself. I've blogged before about her lack of writing - apart from finding it hard to hold a pen, and physically write, we think she has anxieties over the words not being spelt right, and her not seeing the words on the page as she imagines them in her head. So her writing is still sporadic, although we did get an eight page story as our Christmas present last year which was amazing. This year she has decided she wants to publish her own book and has not only typed a story on a laptop at home, but has also drawn illustrations for it. Trying to explain the difficult publishing process to her is another story though (excuse the pun; funnily enough, Sasha is a big fan of those).

Sasha is not keen to enter into discussion about anything much unless it's a topic of her choosing (Skylanders, Pokemon, McDonalds or what we can plan in terms of parties/sleepovers being her favourites). 'Go away' is one of her favourite phrases, along with 'shut the door'... but this is less her being rude and more her need for peace and to be lost in her own thoughts. And her desire to concentrate on YouTube.

Ah, YouTube. Such a big part of our life. It's a form of de-stressing for Sasha; being able to have control over what she watches. There are certain clips which she will have watched hundreds of times over, and she memorises them in detail. The one I know about in most detail is when Skylander Boy and Girl go and visit the Lego Hotel in Florida. I get asked several times a week about when we can go visit that place...

It might sound strange, but because of these communication difficulties which Sasha has had, it did actually seem like an achievement to celebrate when she started interacting with YouTube by leaving comments. Here are some examples below of what she has typed independently over the past year (and possibly thinks I don't know about):

'A seaweed bangege, well ether the animators got lazy or what will they think of next'

'What I don't get is why didn't the parents and herobrine go with 'em'

'U never mentioned what it was based on. But based on the needle and the fishy tail....thing, I'd say it's a narwhal what it's based of.'

'Man, I miss the old, silly, ironic (in some episodes, he was the cause of the problems instead of solving them, I guess) and now look, he's a proper policeman. I miss the old pc plum.'

'Well it's for a long time so somehow it's kinda forever'

'fake facts,fake facts, just more fake facts'

'WTF! Watch your words, kids are gonna see that.'

More recently though I've had a couple of comments left by her on my own videos on YouTube - this one, on a review we did of Harry Potter World (a place she suddenly told us last month she was desperate to go and visit again) made my heart melt: 

'I'll never forget that day...mum, u de best'

But then a couple of other comments on different videos of mine:

'JEEZE I remember the VERY bad times. And the ten-day hospital trip'

'(Embarrassed face)' - on a video I did of our house renovation

Occasionally, other viewers reply to her comments, such as the one which read 

'no it's for seconds and then they get sent off the show you nobhead'

We've not discussed this reply to her yet, and I'm not sure she's actually reading any replies anyhow - she doesn't get the notifications like I do so I'd be surprised if she remembers and ever goes back to her comments.

A couple of weeks ago I was out with friends in a restaurant (I know, how very dare I, again?!) when all of a sudden a notification popped up that I was NOT expecting.

'Kittycat321 has uploaded a video to YouTube'

I nearly screamed out loud, almost dropped my phone down the toilet and wished fervently that the wifi signal was strong enough for me to be able to watch it instantly and take it down immediately if necessary. Luckily, I found out later that there was nothing too revealing in the video, and it was actually quite a good start at videoing her own ideas.

It's already been commented on though: 'What the helll'. Thanks for that, random commenter. Although of course there's nothing to stop my girl from putting similar words on someone else's work....

Watching this, I'm sure Sasha has abilities in terms of computing and technology which we should be able to help her to develop, although I'm fairly sure that won't happen in school. 

Just today, a new comment from Sasha has dropped into my inbox. This was written on a BBC news video titled 'I'm scared of my own autistic child':

'Well, I'm autistic and my parents aren't too tired'

Sasha's words above were actually written in response to another commenter saying that the parents in the clip must be exhausted due to challenging behaviour from their autistic child. When you look at Sasha's comment independently, it sounds like a very reasonable and fairly mature comment to make. However, because Sasha so rarely discusses anything with us, she hasn't mentioned this video at all. I'm left wondering what she really thought about the video, and what she thinks about other autistic children. However I do find it reassuring that she is identifying with being autistic (takes away the whole person first argument issue) and that she doesn't think we look too ancient and shattered!

Today, for the first time, Sasha actually called me in to show me a comment from her which she was obviously proud of having just written. Small issue in that Sasha was trying to be sarcastic in it, and as we all know, that's very difficult to get across in writing. I tried to point this out but all she wanted was some positive response from me about her comment; she wasn't ready to be critiqued.

Probably the biggest issue which many parents have worries about when it comes to YouTube is the unfiltered access to everything. Yes, I'm aware you can use apps and parental controls to only show 'safe' videos but these weren't so widely known about when Sasha was younger. That made it very difficult to introduce them later, as she was already used to accessing videos without filters. 

Sometimes the amount of swearing which can be heard in videos she watches about Minecraft is not exactly 'desirable', but I've made sure that both my girls understand that I won't stop them listening to those words in videos as long as they don't start swearing themselves. Mainly because it's not the way I was brought up so I don't swear personally and I'm not a fan of hearing children swear. That actually doesn't mean I have any issue with other adults swearing - in my mind it's all about how the words are used and in what context. I read this post 'autistic kid swears like a trucker' recently and I totally sympathised - it made me laugh out loud. 

YouTube does get a fairly bad rap a lot of the time, but I fall on the side of wanting to move with the times and learn about social media rather than cut my children off from it completely. 

What are your thoughts? Are you horrified that I let Sasha comment or do you allow your children to do the same? Is YouTube good or evil?!

*Edited on 3rd December to add in her latest comment, which is pretty long and detailed for a ten year old:

'I can add on to that (this is my opinion + trap teams 'dead' now, skylanders 6/7 is what the buss is.)
Callie and Flynn cone with you, and Flynn gets captured by the magic doom radier and to protect Callie (hoping that in the end.. He can finally say it, and he does ;) ;) you know what it is) the player has to unlock the door to the crystals to get close to starite (name of the doom radier)
To do this, players must get four keys from challenges and puzzles. Two are fighting other baddies. The names are mangie (magic) and crystite (magic) starite moves for player playing (get me) he can change the puzzles to make them slightly easyier, he does a move similar to swift from Pokemon (shoot homing stars at the enemy) and he can ride a big star. Which kills pretty much anything. But all of this, in turn, the hardest boss battle perhaps of the whole game depending on how noobie you are. But anyways, he is 100% the hardest fight within the adventure packs. Need more?...'

And edited again, when I saw this comment from Sasha on a video which had had a few comments left in Spanish:
'What? Idk what you said (p.s I'm not fully Spanish)'

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?

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?

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