A little break today, from reliving our story after we received a diagnosis of autism for our younger daughter six years ago. It's Autism Awareness month and I'm not at all convinced I can keep up a post every day (phew, I hear you say) but I'll be writing as much as I can (then I'll probably take May off for good behaviour).
I've been reading so many other blogs over the past two weeks - there really is quite a community of Autism bloggers out there. I'd love to link to them all but I don't think I even know them all, yet. If you do blog about autism, please do scroll down and join in our blog hop for this month.
In the meantime, what I'd like to do is highlight to you some other great bloggers who have experience of autism in their lives. Some are parents, some are autistic; there's a great mix.
I'm starting today with the wonderful Chris from Autistic Not Weird. His blog post 'A plea to the autism community' really struck a chord with me. He writes so clearly, and with so much common sense - can you tell I'm a huge fan?! Please do go visit by clicking on that post title, then come right back. In a nutshell, he's asking people in the autism community to not argue with each other over certain topics. He mentions three; different types of autism (high or low functioning), language choices and vaccines.
In this blog I've previously discussed (mostly with myself) the 'levels' of autism - Sasha's diagnosis from GOSH was 'high-functioning autism' but I totally understand all the questions around what is low or high, or severe or mild, and how difficult that can be to determine. I'm not sure I've come to any one particular conclusion on it and so I try not to offend with what I write. I certainly don't get offended by whatever terms anyone else wants to choose.
I've also talked about language choices and the 'has autism' versus 'is autistic'. I personally prefer the latter, but will of course use whatever terms Sasha chooses when she's really to talk about it. She may not care, in all honesty. Vaccines is not a discussion topic for me - both my girls had them. As far as I'm concerned, they don't cause autism. There are others who believe otherwise.
For as long as I can remember, I've been very good at sitting on the fence. Some people may see this reluctance to be opinionated as a weakness, but I actually like to view it as a strength of mine. I tend to listen to both sides of the argument, and come up with rational thoughts as to why either side could be right. Sometimes my mind can be swayed in one direction, but I can still understand the thoughts of others. I try to respect everyone's opinions.
Recently though, I saw people on my Facebook feed changing profile colour to 'light it up blue' for autism. This is one issue which I cannot sit on the sidelines about, having read this informative post from one of my favourite ever writers, Diary of A Mom, and then this letter from the Autistic Self Advocacy Network. I didn't tell people to not go blue, I just provided the information as to why I wouldn't be doing it myself.
I was soon jumped on for sharing this and told I shouldn't have mentioned it as I was spoiling things; that awareness is more important and blue is just a colour. I'd probably rather people 'went blue' than did nothing at all, but to my mind it's not difficult to pick a different colour and use the same words.
The vast majority of the population wouldn't know anything about the organisation behind the blue idea, and they wouldn't care. But they should. This organisation ploughs money into finding a cure for autism, but more specifically than that, they are leading big research into prenatal testing. So that autism can be eradicated. As my friend Hayley who writes so eloquently at Downs Side Up knows, this is a very slippery slope, and you can read about prenatal testing for Downs Syndrome here.
Sadly I know that there are parents of autistic children who say that they would like to find a cure, and that they would like to take away their child's suffering. I know that many of them would think that we have it easy with Sasha, but believe me, trying to remove as many demands as possible every day and living a life that is not what you expected it to be can't exactly be described as easy. What it definitely is though, is eye-opening, and rewarding. We love living, and we love both our girls just as they are. I'd wish for a society that was more flexible, and more accepting, but I wouldn't wish to remove the autism. I guess in my fence-sitting kind of way I should agree to disagree with those searching for a cure.
I can't condone the thoughts though, that autism is something wrong, something to be cured. More importantly than that, I think everyone should think about how those words are used in front of 'real' autistic people. Nobody should be made to feel any less than another. Autism is a difference, and if anything is wrong, it's that society does not adjust itself enough to let everybody fit in and live happily together, regardless of their DNA.
So sure, if you've read those pages I've linked to, and you still want to go ahead and light up blue, feel free. Just know that to some, you are sending out a message which may not be the one you intend.