Tuesday, April 2, 2013

Light It Up for Autism

I don't talk about Autism as much as I do Down syndrome, but Aaron is one of the many kids out there with a dual diagnosis. Last summer he was diagnosed with Pervasive Developmental Disorder (PDD-NOS), which is one of the diagnoses that puts a person on the Autism spectrum. He doesn't have the social problems that many people with autism experience, but he has significant sensory issues, behavior problems that are more severe than most kids his age, no safety awareness and several other factors that add up to the PDD diagnosis.

Unlike when we got the Down syndrome diagnosis, I wasn't devastated when he was diagnosed with PDD. Quite the opposite actually. Before he was diagnosed, I was frustrated, stressed and felt like I was at the end of my rope with his behaviors and inability to control him. When his Developmental Pediatrician at the DS Clinic in Atlanta discussed his issues with me and gave me the diagnosis I felt a huge wave of relief. There was a name for it. I wasn't crazy. And most importantly, there were things I could do about it.

I still haven't learned nearly as much as I need to about PDD or autism, but I am learning what he thrives on (routine, music and Blue's Clues) and what upsets him (unfamiliar environments and situations and getting overstimulated). Just as with all of his other diagnoses, we learn more every day and we deal with each one as they come. A sweet friend of mine told me when Aaron was born to take things one day at a time and if that was too much, take it half a day at a time or an hour at a time. I have gone back to those words more times than she could ever have imagined and it's truly how I have lived my life since. I don't look too far ahead and when things get rough, as they often do, we just take them an hour at a time.

April is Autism Awareness Month and today, April 2nd, is World Autism Awareness Day. Autism Speaks is encouraging people to "Light It Up Blue" - wear blue, change your FB profile to raise awareness for Autism and participate in awareness campaigns.

The CDC now says that Autism Spectrum Disorders affect 1 in 50 children. It is even higher for kids with Down Syndrome. Nearly everyone knows someone that has been affected by Autism. The more awareness we have, the closer we will come to finding better treatments. We are wearing our blue today - are you?

1 comment:

  1. I've taught a handful of students with autism, and I have an Asperger's/autism Pinterest board with many ideas and resources if you're interested. Also, have you checked out the IAN database? (Interactive Autism Network) It has lots of up-to-date research, links, and opportunities for people with autism and their families to participate in research. Love to you all!