Thursday 7 April 2016

Autism: A hidden disability

Continuing with my recap of our autism story and the early days of this blog...... more questions and reasoning came in my next two blog posts, along with the first mention of the fact that autism is a hidden disability, and thoughts on labels (as in diagnosis).

Sensory issues are also explored and I explain the story behind this dress, which I had to buy from eBay the following year in a larger size because she loved it so much...

So, a couple of days off writing and emotions going up and down and roundabout again - not helped by even more sickness. Looking forward to feeling fit and healthy again sometime soon.

Talking to more people now about the situation and I think it helps..... but am swinging between thinking Sasha does have this problem and wondering again whether she is just a 'normal' toddler. They all have their moments, and in fact Sasha's behaviour is often better than her elder sister's! She seems generally more content - but I have to admit that I have probably altered my behaviour to let her be more settled. I think the difference is in how the little things seem to stress Sasha (and therefore me!) out rather than just upset her as they would Tamsin, but I can't really be sure anymore. Need some time and space to think things through, and our chance to talk this through with a professional can't come soon enough.

Am happy though that she seems to be enjoying her extended hours at nursery, and she does still show signs of development. This morning she attempted to read a book to me at the kitchen table, and although the speech isn't clear, the intention and intonations definitely were. Even as little as a month ago this is something I couldn't imagine Sasha doing - any more than 2 seconds a page was too long for her to take interest in any book!

Will try to continue to record both the improvements and the differences over the coming weeks...
Still no news on when our next appointments will be - something I need to chase up tomorrow in my 'free' time. Sasha has impressed me today by counting aloud in Spanish up to 7 (thanks Dora!) - although I'm sure no-one else would know that's what she's doing unless it's pointed out to them. Even then they may not believe it :) took me a while to realise myself!

The word 'normal' keeps sticking in my mind, and it's not really about how I see Sasha or Tamsin, but more about how society labels people, and what really is classed as 'normal' these days. We are lucky enough to have had a lovely 2 year old girl with Downs Syndrome join our swimming class this term, although she has been initially a little reluctant to join in, just like Sasha was last term. Again I felt embarrassed as I told her mum about Sasha, as if I didn't or don't really have anything to complain about (which is true - again I'm not complaining, just feel a need to explain). I also know very little about Downs Syndrome, although I will make the effort to learn a little more. I think what struck me is that she probably doesn't need to explain to strangers how her little girl is, and yet I'm sure everyone makes their own assessment without really knowing her. In a way, I guess that is what will happen with Sasha, and possibly even more so as nothing is obvious physically 'different' and a lot of her behaviour, as I've already mentioned, is on a par with most other toddlers. But I'm already concerned for her and how people perceive her if they don't really know/understand what is the matter - and as so few people know anything about autism (myself included until very recently), who can blame them? That's why, in a way, I feel it's important to spread the word - even if writing and not talking is my best way of communicating!

I recently filled a new photo frame with 3 photos (as there were 3 gaps in it, that seemed like a good idea ;) ). One of each of my girls independently, and one of them together. The one of Sasha on her own is from summertime when we had a lovely day meeting up with an old friend of mine in Kew Gardens, and Sasha is wearing a nice summer dress and sandals in it. Now although Tamsin has always been a skirt or dress kind of girl, Sasha has not really shown a preference (other than for no clothes at all) and so has mostly been dressed in trousers. From the first time she saw this picture in the frame, she went to her wardrobe and found the dress (which thankfully still fits!!) and has been asking for the sandals (which I believe are in the loft somewhere as they probably don't!). She has wanted to wear it nearly every day since, although mostly not to go out in (phew, it is winter after all). After last night, I had put it in the wash basket, and this afternoon she started looking for it again. She made it clear to me what she wanted, by taking me to the wardrobe and refusing every other dress in there, and then started to get very upset/irate when I tried to explain it was in the wash. After 10 minutes I gave up and the dress (slightly dirty) went back on - after all that would do no harm. Now is that normal toddler behaviour? Was she understanding my explanation of it needing washing? I'm really not sure on either count. However I think if it had been Tamsin at the age, she could have been mollified with something else equally nice.

Which brings me back to another memory which hit me yesterday, and which I've alluded to just above. Sasha not wanting to wear clothes. It would be a real struggle for us to get anything on her, with screams and much wriggling, and although most days now it's not so bad, she still hates socks with a passion (maybe it's the Dora overload??!) and would much rather be in just her nappy at home even on these cold days. And she was adamant she did not want to wear a coat out today, just her fleece top. Maybe 2 pointers for autism - sensory overload is one (in more severe cases children can't bear to be touched or have aversions to zips, seams etc), and not feeling extremes of temperature or pain is another. But Sasha is not exhibiting extreme reactions - again can that be put down to 'normal' toddler behaviour? Or is it just that she is learning, and we have in some way conditioned her into understanding that wearing clothes outdoors and at nursery is the socially acceptable thing to do, so she just tolerates it? Boy I wish she could talk ;)

Well that's enough for tonight, I can hear her coughing away upstairs now. She helpfully has one of those annoying coughs that gets much worse when you lie down and are very tired, so I've been up and downstairs watching DVDs between 2am and 4am for the last 3 nights, yawn! Tamsin got up at 4am last night to see what was going on but thankfully turned into a little angel and went straight back to bed. Which is where I'm off to now!

For more information on autism please do visit and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit

For Day 5 of our story please read: AAA Day Five

For Day 4 readAAA Day Four

For Day 3 readAAA Day Three

For Day 2 read: AAA Day Two

For Day 1 read: A is for April and Autism Awareness

Sons, Sand & Sauvignon

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