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Six years ago was 'autism D-day'
On Nov. 20, 2006, just a day shy of her third birthday, my daughter was diagnosed with autism.
Tue, Nov 20 2012 at 8:00 AM
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Ava and her grandfather hiking in the Superstition Wilderness. (Photo: Melissa Hincha-Ownby)
I’m stepping away from my usual Eco-Biz & Money posts to share a very personal story with you today.
On Nov. 21, 2003 my daughter, Ava, was born. Nearly three years later, on Nov. 20, 2006, she was diagnosed with autism. Hearing those words, “your daughter has autism,” created conflicting feelings within me; I was relieved because I knew something was different and now I could plan a course of action. On the other hand, I was absolutely frightened — what would her future hold?
Every year as her birthday rolls around, I think back to what I’ve dubbed "autism D-day" — in this case the "D" stands for diagnosis. Just like the day of her birth, autism D-day has had a profound effect on our family.
My son had just started kindergarten, so I was planning to spend my days with Ava. Lots of one-on-one mom and daughter time was replaced with special education preschool classes and a variety of therapy appointments. The year between her third and fourth birthdays was rough.
When I look back at my dusty old Mutterings of A Mindless Mommy blog — a blog that I started purely as a stress outlet — I am reminded of the mega-meltdown at Sea World, when strangers chided me for having a spoiled child or that time at Target when a mother told her own child that she couldn’t believe I still had a diaper on a “child her age.”
In 2007, autism diagnostic rates were only 1 in 150 children. Today, the rate has jumped to 1 in 88. The general public knew far less about autism just a few years ago than they do today. I was in a world where autism was misunderstood, a world where the public often mischaracterized a child with autism as a spoiled brat or the parents as neglectful or lazy. These mischaracterizations were painful to hear.
Looking back at my posts, I can see how scared I was. Autism is a scary diagnosis, but now that I’ve been traveling this road for six years, I can help other parents overcome the initial fear and focus this emotion into something more positive. The first thing I tell a parent of a newly diagnosed child is that the child is the same person she was before the diagnosis — but with the diagnosis, the parents now have some guidance.
This journey is by no means easy. It can be rough, and families will face setbacks. The journey also isn’t the same for every family; children are affected differently and what may help one child may not help the next. But parents are not alone in this journey. There are a plethora of resources available — from books to websites and state agencies to nonprofit organizations. There is significantly more support available today than there was just a few years ago.
So now here we are, on the eve of my daughter’s ninth birthday. She has made tremendous developmental progress, even surprising her doctors. She’s a happy, engaged, loving child who loves to dance. These days, her therapy appointments have been replaced with ballet class, and next month she’ll be making her first appearance in "The Nutcracker."
As my small soldier steps up onto the stage at Phoenix Symphony Hall, I know that I will have tears in my eyes like many other moms of young first-time "Nutcracker" performers. However, my tears of joy will go beyond simply being proud of Ava — they will remind me that not too long ago, I was fearful for her future.
If you have a child newly diagnosed with autism or know of a friend or family member in this situation, please have them reach out to me, as I’d love to share my experiences with them. I wish I would have had someone to talk to me during those early days, so I never turn away a parent who has a question. Find me on Twitter @MommyMellie.
Photo of Ava: Zachery Testa/ZTesta Photography
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Funny how things happen, perhaps for a reason. I just read this post on the topic of D-Day over at A Diary of a Mom. It's entitled "D-Day", is well worth reading and can be found:
http://adiaryofamom.wordpress.com/2012/03/28/d-day/
As the father of a now teenager with autism (and like with love) I can see both sides now.
The best thing you can do is encourage people to stay the hell away -- and shun -- the 'Autism Speaks' charity. There is nothing on Earth that is more damaging and disgusting than that collection of eugenic supporting group of people who would rather get rid of their Autistic child than the 'horror' of having to put up with one.
If we do not fight back than they will win…
Totally agree, Lindsay. I'm tired of the fear mongering from Autism Speaks. The charity funds a lot of useful research, and is good at wrapping itself in the respectability of science. But the organization was brazenly anti-vaccine in its early days, and that anti-science DNA is still apparent in some of its marketing.
I definitely fall on the neurodiversity side of things...
"In 2007, autism diagnostic rates were only 1 in 150 children. Today, the rate has jumped to 1 in 88."
The 1:88 number is from a 2008 CDC survey. It is an average derived from administrative records in ten states. Some states do a better job of screening children than other states. You can read about the ADDM (Autism and Developmental Disabilities Monitoring) network here:
http://www.cdc.gov/ncbddd/autism/addm.html
No need to apologize. Epidemiology is a confusing topic to write about. Part of the problem is that the vocabulary of the science has been co-oped in the vernacular. Words like rate, incidence, and prevalence are used interchangeably. But each of those words has different, precise meanings to the folks who track and count autism diagnoses.