Tuesday 21 November 2017

Insight into autism

It's been an interesting kind of day here. This morning I had some mums around for coffee, friends who have their own challenges in family life. It was nice to feel a bit less shut off from the world for a while - and it helps that this group all just 'get it'. Sasha was in a good mood and actually popped in to say hello to them. Then she insisted on helping to make the tea and coffee for them, which was a first. Think she did a pretty good job despite never having done that before! 
Ssaha in front of bright canoes on beach
A photo from one of Sasha's favourite places. I chose this one because there's so much colour in it; just like her.

In the afternoon Sasha and I went to collect one of her friends from her old class to bring her back for a playdate. This meant walking back into the old school which Sasha hasn't been attending since June. We've done it once before, and it has definitely stirred up emotions for her both times. What she finds most difficult is the thought of all the attention from the other children - she mostly hides behind me and tries not to let the other children see her, and she only responds very quietly to their 'hellos'. 

Today she did hide for a short while but then agreed to go in and see the class teacher. This is a teacher who Sasha already had back in an earlier school year and who she loved then; I know she would have been brilliant with Sasha this year so I'm kind of sad that Sasha never got the chance to be with her again. A couple of days ago Sasha actually mentioned something about school out of the blue (she rarely does) and she talked about this teacher as if she was her teacher now anyway, even though she isn't, if that makes sense. Slightly embarrassing that Sasha still felt the need to stroke the teacher's chest as she gave her a big hug today, but I guess that's what she used to do back when she was younger! 

The playdate after school went well, possibly due to the fact that the 'old' young friend is very understanding and didn't mind a bit of Minecraft and Pokemon. Sasha classed it as a 'very good' day and asked when we could do it again. I do hope I can keep some relationships going with the girls from her old class; they were all so lovely to her.

Later on in the evening, I asked Sasha about a comment she had put on a YouTube video about autism (my next blog post is going to cover that in a lot more detail), but she wasn't keen to talk about it with us. I settled down to watch the next episode of The A Word and didn't give it another thought for the next hour. If you haven't yet seen this drama, please do switch onto BBC One at 9pm on Tuesdays - I'm loving it, although of course it doesn't mirror our experiences exactly.

At bedtime, I then had what was probably the longest talk about autism with Sasha yet (all of about 5 minutes). She asked me if there were more normal or autistic brains in the world, and then asked for a specific number - I told her I'd have to google and let her know in the morning! As I've already done that, I'll share with you - in the UK, there are estimated to be around 700,000 autistic people, 1.1% of the population. That's more than 1 in every 100 people.

I tried to point out that we say 'neurotypical' rather than normal, as it's not that her brain isn't normal, but she didn't seem interested in listening to that kind of language detail. I suspect it's just another thing that will take a little while to sink in though. 

When I mentioned that my friends who came round this morning all had autistic children, she was interested in that, and wanted to know whether they had more boys or girls. That could lead the way to further discussion at some point, as of course all the research points to many girls masking their autism and many remaining undiagnosed. This morning's group had more boys than girls, but I pointed out that I do know a fair few autistic girls locally too.

What Sasha said next though, was really quite enlightening. She said that she worried for the world because she was sure the ratio would eventually go up to 100% of people being autistic. I tried to counter this with lots of examples of how autistic people have done good in the world (Bill Gates and Steve Jobs sprang to mind) and then I asked why she thought it would be a bad thing. Her reply was that it would be worse because of all the worries, because autistic people have lots of worries. She went on to mention things which are 'too much of a worry' for her, like planes, fires and natural disasters. She then went off at a tangent about forest fires before I managed to distract and calm her down for bedtime. 

This was a moment to treasure though; a real insight into how our autistic girl's brain is working. We don't get many of those, as her communication is still limited to times when she chooses to, and topics she is interested in. I'm living in hope that we get more opportunities like this to understand her over the coming years. 

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