Dates and Awareness

In my years as a fundraiser, I have seen many days and months on the calendar devoted to many of the causes I have worked with. My first job as a fundraiser was with a shelter for abused women and their children, so there was March 8th, December 6th, Persons Day and others of significance to observe. More than half of my time in the nonprofit world has been spent working with HIV/AIDS organizations, so I know well that December 1st is World AIDS Day.

This year, for the first time I can recall I was aware that April 2nd was World Autism Awareness Day and that April was Autism Awareness Month.

It’s not like I needed to notice. Knowing did make me put a twibbon on my Twitter pic and change my facebook pic. If you read my last post, you saw that I actually spoke to a real live person about wearing blue on April 2nd.

Here’s my question about World Autism Awareness Day. Where was it 4 years ago when I could have used it?

Having boy-girl twins is a pretty impressive learning opportunity if you want to watch how children develop. Rachel would be about a month or so ahead of Daniel for every developmental milestone, including speech. Although, Daniel was the first one to say an identifiable word in when he said “duck” appropriately. We became used to Daniel being a little bit behind Rachel.

Shortly before the twin’s 2nd birthday, I started noticing that Daniel wasn’t making a lot of eye contact and wouldn’t turn his head when called and a few other things that made me wonder if something was up.

The twin’s older sister, Rebecca, had begun having seizures at about age 1. That was the first thought, but there was no lip-smacking or other clues.

The twin’s mom took Daniel to the family doc 3 times and each time he said Daniel would always lag behind Rachel because boys always develop more slowly than girls.

In searching the internet, I started to become suspicious about autism. WebMD and Wikipedia became my best friends and provided me with the “a ha” moment. Loss of speech was the key. Daniel at that time did not have what we would have recognized as the repetitive motions that I always thought a kid on the spectrum would have. But going down the list, I realized that Daniel had stopped talking or even making noises.

In I go to make the case with the doc. It was the speech issue. I listed all the other things that lead me to suggest autism, but speech clinched.

That set in motion getting access to the specialists, a diagnosis, a variety of therapies and getting on the IBI waitlist in March of 2009.

Following the diagnosis, all sorts of friends started talking about the folks they knew with autistic kids. Some of the stories were so saddening because some parents endured years of misdiagnoses and others didn’t know how to explain to others what their kids were living with so they withdrew from social circles.

A large chunk of families living with the disease lack awareness about the diagnosis and I wonder how to make April 2nd more relevant to those parents wondering why their kids aren’t making eye contact.

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4 thoughts on “Dates and Awareness

  1. There is a small boy who just started IBI with Ox2 at Surrey Place – he’s only 3 years old which seemed young to be actually starting IBI but he’s been on the waitlist since he was 15 months. His parents had friends with autistic children and they knew all the signs. They also had an extremely on-the-ball pediatrician. Getting treatment really shouldn’t be a lottery depending on who you know, should it?

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    • Good for that little boy’s parents and their friends, but your story points out why it does seem like a lottery too often. Imagine what a coordinated strategy among the health, social service and education bureaucracies in Ontario could accomplish for asd kids. Heck, imagine what could be accomplished if the Ministry of Education didn’t have to keep clarifying what it wants special ed to look like to the dozens of school boards.

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  2. My cousin has autism, he is at the severe end of the scale and when my aunty heard about some of the things that were worrying me about Colin (he was only 2 at the time), she was the one that first brought up the word autism. I didn’t know much about it at the time and thought that as Colin was saying the odd word and able to do jigsaws that were way above his age range, that she was wrong…sounds stupid doesn’t it?
    Anyway I was lucky in that he got diagnosed early and there was a lot of help on offer..I am sure this is why he has progressed so well..but in the UK its like a postcode lottery, some areas have lots of help, some have none …something I learned when I moved from Scotland to England.
    From personal experience, I have found that the support of other parents that are going through the same experiences has been my lifeline..professionals have their place, but they don’t know what it is like to live in our shoes.
    Great post again

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