In the past week, a few things have happened that have left me feeling both blessed, but also concerned to a great degree…
Let me rewind a few weeks. I recently connected (thanks to mutual friends on Facebook) with another mom with whom I have a lot in common; a lot. She’s not just a mom – but a mom living literally less than 5 minutes away, in the same town…Raising not just a child – but a boy the same age as Ethan…Not just a boy in the same grade as Ethan – but in the same school district…and the clincher – her son also lives with Asperger’s Syndrome and experiences many similar issues that Ethan faces on a daily basis.
What a blessing to connect with a family so geographically close and so similar in so many other ways; we’ve already met for a few play dates with the boys, a coffee and breakfast just for the Mamas and have already gotten our families together for a family fun night. Those of you who have no social life (thanks to Autism) will understand that for my family, this is huge!
Then, within the last week, I learned who Ethan’s Upward Sports soccer coach will be this spring. (If you follow my posts, you know that this will be Ethan’s second team sport experience – ever; we were too busy in his younger years with therapies to consider sports! Click HERE to read about our wonderful Upward Basketball experience this winter.) So, even though I’m planning to assist the head coach at practices and games each week, I’ve been praying for a patient, understanding and kind soul to lead Ethan’s team. With that said, I would’ve never guessed that the coach assigned to Ethan’s team would be a man who is also raising a son with Asperger’s Syndrome (now 15 years old). The coach was open to learning more about Ethan and has already read my “Ethan Book” which carefully lists Ethan’s strengths, weaknesses and signs to watch which may signal that Ethan is going into sensory overload.
An aware, open and [Asperger’s] experienced coach! Sweet relief! Thank you, God! I’m going into this season with such a positive outlook.
I feel so very blessed! And, even amidst feeling truly blessed, I can’t get rid of the nagging reminder that while it is lovely to meet two families who will truly understand how challenging our lives can be on the difficult days (and conversely how filled with joy on the good days) – these are TWO additional families touched by Autism. And, this has become the norm for me. Nearly every week a friend or family member sends me an email or facebook message asking if they can connect me with someone they know who just learned that their child (or grandchild) has ASD. I'm always happy to connect with parents new to the diagnosis; some of the most important things I've learned on our journey have been through other parents.
With Autism Awareness month nearly upon us, I am eager to see how the community (local and national) will embrace our kids and our families this year. But that nagging feeling in the back of my mind makes me wonder: who in our community knows how very common Autism has become? The rate of prevalence often quoted in the media is 1 in 110…but how many people realize that “1 in 110” comes from a 2007 CDC Report looking at Special Education students in 2000 and 2002? By my calculations, those numbers, while released in 2007, are roughly a decade old!
Plus, I have to wonder: how many people realize that in certain locations in the US, the rate of Autism prevalence (found by the CDC) was even more staggering. In New Jersey the rates were through the roof! Something like 1 in 56. Again, that was in 2002 – the year Ethan was born. This bears repeating: while these numbers seem pretty scary (they should – they’re very frightening as numbers go) they are OLD. My gut feeling is that there are far more than 1 in 110 children living with Autism Spectrum Disorders in America…far more. The real number? Who knows? Rates of autism prevalence don’t seem to be a priority to be updated in a timely manner. But I digress; that, is topic for another blog post…
The bottom line is that these days – in 2011 – it seems like most people either:
• have a friend or neighbor raising a child on the spectrum
• have a close family member (sister, brother, cousin, adult child, etc.) raising a child with ASD
• are themselves working non-stop day and night to meet the unique needs of a child living with an Autism Spectrum Disorder
For me, this begs a question…Is Autism the New Normal for our kids' generation?
Like I mentioned at the start of this post, I feel truly blessed by all that I have in this life, especially Ethan. But at the same time, when I stop to consider why so many families “get” what we’re going through, I am gravely concerned for the future of our world: for Ethan’s future – and God-willing – Ethan’s children’s future.
As April approaches, I say bring on the awareness and bring on a ton of added acceptance for individuals living with Autism Spectrum Disorders, too. Please. But, let us not forget for a moment that we (as a society) need to focus on prevention in a big way. While we don’t fully understand what is “causing” Autism Spectrum Disorders, we do know there are likely environmental and genetic components – probably working in tandem to create this group of symptoms we presently label ASD. These kids are often very physically ill in a variety of ways, have impaired communication skills, struggle with gross and fine motor skills, experience significant social challenges, and must learn to live with developmental delays, repetitive behaviors/focuses and often cognitive challenges. Autism is exhausting. Autism is expensive. Autism takes a heavy toll on families. And yet, Autism is continually increasing…
This spring, my prayers include thanks to God for the many blessings present in my life, but I’m also praying for future, unbiased studies which will address Autism causation and prevention. We need answers and guidance.
Autism may very well be the new “normal” if we don’t turn things around soon.
Do you feel the same nagging sense of urgency?
Leigh Attaway Wilcox is a writer and editor for the projectLD family of companies. Leigh is Assistant Editor of the internationally acclaimed AutismSpot.com and her work can be found on many of the pLDNetworks sites. Leigh is the author of ALL BETTER: A Touch-and-Heal Book published by Piggy Toes Press in 2007. Leigh lives in North Texas with her husband and young son who loves reading, LEGOs, Mario Bros. and also happens to live with Asperger's Syndrome, an Autism Spectrum Disorder.