Yes, this is the same as my welcome post. It will make sense when you read it, I promise.
My name is Valerie. I have a son with autism. His name is Billy. He is nine years old, smack bang in the middle of the autism epidemic.
Yes, I believe it’s an epidemic (if that ruffles your feathers, I will not be offended if you want to click somewhere else).
Billy has multiple additional diagnoses alongside autistic disorder – Epilepsy, GI disease, Anxiety and Transverse Myelitis (an auto-immune condition). It goes without saying (but I’m his mother so I can say it), he is the best kid I know. I’m not here to sing his praises, though (as much as I do in my life), nor am I here to sing my own. I’m doing this to try to make change in a world that needs it, about an issue that’s important to me.
We live in Australia, where try as I might, I can’t find any public figure who has stood up and asked the tough questions about autism. Well, not the questions I want answered.
This site is a clearinghouse for the kind of information I wish I’d had access to when I started out. Hell, it’s the kind of information I need now. I’d go so far as to say, it’s the kind of information we all need to be chewing over if we are going to get any kind of consensus about what autism spectrum disorders are, and what we should be doing about them.
Here are some reasons why you might (or might not) want to explore this site.
While I fight every single day for acceptance and awareness of autism and autistic people, that fight is no longer my primary concern. I am glad others are doing it, but I think there is an urgent need to acknowledge and then move past simplistic messages about autism being a charming variant of normal. It is for some, and absolutely not for others.
In our lives, and in the lives of many people we know, autism is a medical emergency. It started with a speech delay and a few sensory issues, and now lives waaaaay too much of its time in the hospital.
Autism is a behavioural diagnosis, not a medical one, yet our son’s medical needs are often glossed over with phrases that have really started grating on my nerves.
I don’t believe, for example, that he’s ‘unlucky’ (as some of his doctors say). He has not been ‘struck by lightening a few times’ (as some of his doctors say). His additional diagnoses may well be found among a percentage of people with an autism diagnoses, but they are not ‘just autism, Mum’ (as some of his doctors say).
However, I don’t have any answers about what is actually going on. I just have a lot of questions.
So, I read a lot. I talk to a lot of doctors (they’re in our lives a lot, so it seems logical to quiz them a little). I talk to a lot of other autism parents. I make connections where it seems logical, and I keep on looking if the logic seems spongy.
I think people in positions of medical power should be doing more of what I am doing, because there is nothing more scary than carrying your sick child into an Emergency Room and being met with blank stares. I write Kid’s TV for a living and all I’ve got in my arsenal is catchy songs and the odd poo joke.
So, if I’ve scared you away, so be it. If you are still here, click around a bit and see what you find.
There will be articles and studies. There will be petitions you can sign or graffiti if you wish. There will be stuff you can watch, listen to and buy. There will be the odd story from our lives. If you wish, there will be stories from your lives too, but we’ll get to that later.
If you want to know more about me, follow these links:
– The Autism Experience (book): http://www.janecurrypublishing.com.au/The-Autism-Experience.htm
– Through My Eyes (song):
http://www.youtube.com/watch?v=0HwDXoHnVxY (Thanh Bui)
http://www.youtube.com/watch?v=UGCrzmJfwcE (Scott James)
– Jump on the Rollercoaster (where this all started): http://jumpontherollercoaster.blogspot.com.au/
– Change.org (kind of explains itself): https://www.change.org/en-AU/petitions/pm-julia-gillard-health-minister-tanya-plibersek-discuss-the-medical-nature-of-autism-in-a-public-forum
If you want to know more about diet, supplements,poo, medical innovation, research, therapy, poo, auto-immunity, epilepsy, political change, social change, poo… the autism we live with, stick around.
I think we have a lot to learn from each other.
If you are already deep in autism world, you will know one thing for sure… it’s not a place where people agree very often. To that end, I will not be engaging in arguments on this site. Not one. If you are enraged by something I have posted, re-post it somewhere else with lots of colourful language about what an irresponsible/stupid/conned by hippies/conspiracy theorist I am, and argue with your friends. I don’t want to know. I’m not interested in engaging in pointless online barneys with people I don’t know about information we have just encountered. I think it’s a waste of time and emotional energy. I will moderate comments and delete what I don’t want to publish. I’ll be fair, I promise, but my decision making criterion will be ‘is this helpful?’.
The point here is to disseminate information – information about autism.
Some of it will become gospel. Some of it will become humour. Most of it will swim about somewhere in between. I don’t believe anyone has a license on correct or incorrect. Information is dynamic. In areas like autism, where the doctors look you straight in the face and say ‘We don’t really know…’ all the time, I believe we have an obligation to keep our eyes/ears/hearts/minds (we all learn differently, right?) open.
If you think the world needs changing, tell a politician or an academic or someone who can change it much more effectively than we can arguing in a comments section of a blog. If you agree with the way I’m going about things, join me in my actions.
If not, have a great day.
Actually, we should all aim for a great day.