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.