Wednesday 7 November 2012

Autism: How and when to educate others?

Recently I read a brilliant post which points out a lot of the myths surrounding autism. Luckily it also provides the facts. If you're interested, please pop on over to Let's Chat Autism but do come back!

There was one section which interested me greatly:

Myth: Autism spectrum disorders are something to be hidden. Other students should not know about the presence of an ASD in a classmate. If you do not tell the other children, they will not know that something is “wrong” with the student with an ASD.

Fact: Students need to know when their classmates have a developmental disability that is likely to effect interactions and learning. Students as young as five years old are able to identify differences in their peers. When students are not given appropriate information, they are likely to draw the wrong conclusions, based on their very limited experiences. Confidentiality rules must be taken into consideration and parental approval sought to teach peers how to understand and interact successfully with children with ASD.

From the start of our journey, I always knew I wanted to 'tell' people about Sasha. This was driven by a desire to build awareness, and to help others understand. It's only a hidden disability for as long as we try to keep it hidden.

Sasha's speech didn't develop at the same rate as her peers - at this stage she has a great vocabulary, but an unusual turn of phrase, and her sounds are still not totally clear. That makes it obvious that there is something 'different' about her. I'll have to be honest and say that sometimes, when she does say something in public which is not quite right, my heart does sink a little. Simply because I realise how it sets her apart from her classmates and it reminds me of the gap. Most of the time it also makes me smile, because she really is infectious.

Along the way, I've met other mums of children with autism who haven't wanted anyone to know about their child's diagnosis. They have had their own individual reasons for not wanting to 'share', and the reasons could have been anything from the personality of the parent, to the child not being 'very' autistic - i.e. the parents have felt that it is not that noticeable and therefore they don't want to draw attention to the 'difference'. I have explained before that I almost feel a  strange sense of relief that Sasha's speech makes her 'noticeable' - maybe not instantly, but certainly after spending any length of time with her. It must be so much harder when people question a diagnosis even more than they did for us. 'She's fine' or 'she'll grow out of it' were probably two of the most difficult things to hear when Sasha was younger, however well-intentioned.

Over the past 2 years there have been times when I have questioned whether I should have been so open and honest about Sasha's diagnosis. I think there have been times when others have hinted indirectly that it was the wrong thing to do. I still stand by my decision; it's not in my nature to be secretive. Good friends have told me both that they think I'm brave, but also that they believe, like me, that it's the right thing to do.

Being open leads to its own problems though. Now Sasha is 5, and in Year 1, I've been wondering at what point we need to explain to her peers why she is unable to follow instructions in the same way as they do, and why she can 'get away with' not joining in. Her classmates don't know what makes Sasha different, but how can they even begin to understand if we don't tell them? The difficulty is though, if we do tell them, how do we tell Sasha? 

She is still really unaware of her own difficulties, and the consequences of refusing to participate. Some of her classmates are already very aware of Sasha. Luckily they seem to just love her for who she is right now, which is heart-warming of course. If we try to explain autism (!) to her classmates, there's every chance one of them would give her the story at some point in the not-too-distant future. Or maybe even half the story. And she might just understand a quarter of it. See what that might lead to?! Dangerous territory I fear.

Sadly this is the scenario we will face at some point. Explaining to Sasha is probably going to be the most difficult thing to do, ever. How will I know when it's the right time? Will there ever be a right time?

Being bullied is a sad truth for lots of children with autism. For lots of children without, too. I can honestly say I never felt the fear of being a victim of bullying thankfully - bitchiness which happens with girls, yes, but not bullying. That doesn't mean I can't imagine the despair of it. There are bullies everywhere in the world and sadly they do tend to pick on the weaker ones. Of course the children now are too young, but we have to face the fact that it is likely to happen in the future. 

In the meantime I'm obviously keen to pave as smooth a path as possible for Sasha. If we educate more parents and children about autism, then hopefully there will be less bullying and more understanding.