Monday, April 2, 2012

April 2 - World Autism Awareness Day

This is what autism looks like! Juliet at age 3, shortly after diagnosis.
  Hello Friends - I have permission to post the blog below from a friend of my cousins in many people have walked this journey and I think Kristen tells her story in an accessible and honest way....I have linked back to her blog at the end for more excellent information. 
Dear Friends: April 2nd is the U.N-declared World Autism Awareness Day, a cause that is near and dear to my heart thanks to one beautifully quirky 6 ½ -year-old girl — my amazing daughter, Juliet (pictured at age 3, when she was formally diagnosed with ASD).
Many of you have followed our family’s journey on the autism spectrum over the years, and I am so grateful for your support of my efforts to raise awareness of ASD. I hope you will continue to back this “Mamma On A Mission” by taking a few moments to read this post and then passing it along to your friends/family who have young children. The entire month of April is dedicated to Autism Awareness & Acceptance, so you have some time!  
One of my motivations for being so open about our family’s experiences is to help put a human face on a condition that is often plagued by stereotypes and misinformation. At the same time, I am particularly passionate about helping other parents recognize some of the most common red flags for ASD and encouraging them to follow “When in doubt, check it out”  if they have any concerns about their child’s development.
But first…a quick refresher on the basics:
Autism spectrum disorders (ASDs) are neurodevelopmental disorders characterized by:
  • Delays or differences in communication – both verbal (understanding & using spoken language) and non-verbal (e.g. pointing, smiling)
  • Differences in social interactions (relating to other people and sharing emotions)
  • Routines and repetitive behaviors  
Quite often, people with ASD also have sensory sensitivities.
The autism spectrum includes Autistic Disorder (“classic autism”),Asperger’s Syndrome, and the awkwardly titled Pervasive Developmental Disorder-Not Otherwise Specified (“PDD-NOS”), which is diagnosed when the full set of criteria for either autism or Asperger’s syndrome is not met. Sometimes the term “autism” is used to refer to all ASDs.
The very latest figures from the U.S. indicate that 1 in every 88 children — 1 in every 54 boys — has been identified as having an autism spectrum disorder.  ASD is now the most common developmental disorder in my adopted country of Australia . If you don’t have a loved one with ASD in your own family, I can guarantee that your children have schoolmates on the spectrum. They will likely have friends on the spectrum. They will work with people on the spectrum. And, someday, they might even have a partner or a child on the spectrum. ASD is that common.
It’s called a spectrum precisely because the blend of symptoms, and the degree to which they affect a person, can vary dramatically. Symptoms may go unrecognized, especially in mildy affected and/or gifted children or when more debilitating conditions mask them.
Just as every child with ASD is very different, every family’s experience with ASD is different. I can’t profess to know what it’s like to parent a child who is severely affected by autism, but I can share something that seems to be a common thread for all of us with kids on the spectrum: the emotional journey of coming to terms with a new reality that includes autism.
When I first started worrying about Juliet’s development, at about 12 months old, autism was nowhere on my radar screen.  What little knowledge I did have was based on having seen the movie “Rainman.” Sure, Juliet had some unusual interests, behaviors, and sensitivities, but she was happy baby who loved to engage with me and Sean. Why would we need to be worried about autism?!
In hindsight, Juliet actually showed several early warning signs of ASD as a baby and young toddler, but I failed to recognize them as such. I had niggling worries that something was amiss, but no one around me seemed to share my concerns.
Sean thought I was overreacting in stereotypical first-time mother fashion.“She’s fine. She’s just not an extrovert like you.” Well-intentioned friends and family comforted me with: “Don’t worry. All kids develop at their own pace”and “Of course she’s a bit different…just look at her mom!”
Likewise, our pediatrician wasn’t overly concerned by the fixations, the sensory issues, and lack of interest in other kids. “A lot of parents would love to have a 2-year-old who can read! Look how well she engages with adults.” A few loved ones did have concerns, but they were hesitant to say anything for fear of freaking me out. I clung to these reassurances as the reason not to probe my concerns any further.
Finally, two very brave friends approached me and suggested that we have Juliet assessed for ASD by a specialist. It was the very first time that anyone had evensuggested  that Juliet might be at risk, and the more I read about ASD, the more I saw glimmers of Juliet. I was overwhelmed with fear and grief. Meanwhile, Sean remained totally unconvinced that his darling daughter could be on the spectrum (both very common reactions, I later learned). 
The lead up to Juliet’s assessment was a very stressful time for us, but getting her diagnosis (of PDD-NOS) ended up being a blessing for our entire family. Most importantly, it made both me and Sean realize “Wow, this is REAL.” Juliet wasn’t going to magically grow out of it or develop certain skills by osmosis. It was going to take a tremendous amount of hard work – by us and by Juliet – to help her build the core skills she would need to make her way in the world.
Early detection led us to early intervention, which can be so critical in improving outcomes for kids with ASD. Juliet benefitted from 2 ½ years of outstanding, very intense early intervention before she started school. We are extremely fortunate that she responded so well to it and that we still have some terrific professionals guiding us. Many equally deserving families don’t have this type of support and are doing the best they can with limited resources. It is a travesty that — in many states and countries — timely intervention and support services for people with ASD are so often tied to their family’s ability to pay the steep price tags, if services exist at all!
Juliet’s diagnosis compelled us to search very hard for a school with a strong track record of inclusion and familiarity with ASD (when one popular local school indicated “Oh, we don’t have any children like THAT here,” we quickly crossed them off our list!)  We have also had the privilege of connecting with a large network of ASD families who have been a great source of friendship, information, and inspiration over the years.
When we first started out on our ASD journey, I couldn’t see past the term “lifelong disability.” I didn’t want my child to be different. Over the years, we’ve come to accept autism as just another part of our family’s “normal.” Even though it’s still tough to watch Juliet struggle with things that come so naturally to other kids, and even though some people will still make assumptions about her based on stereotypes and misinformation, our focus these days is on nurturing and celebrating Juliet’s amazing “differing abilities.”
The world needs people who see things through an unconventional lens, and our job as Juliet’s parents is to make sure that she has the confidence and core skills she needs to shine on her own terms. ASD does not define our daughter, but it is an important part of who she is, and we are proud to embrace it. Now we just want the rest of the world to do the same!
If any of you reading this note has concerns about your own child’s development — be it suspected ASD or some other potential issue — I hope that our story provides a gentle push to take action. There is nothing to lose and potentially so much to gain. Please help me spread that message.
With deepest thanks,
For more excellent information go to Kristen's Blog:

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