WHAT'S IN A NAME?

That which we call a rose
By any other name would smell as sweet.

-William Shakespeare

Looking back I guess the earliest, clearest clue that our little boy had strayed off of the neurotypical path was that he did not always respond to his name. There were certainly other signs which I will set out later, but the failure to respond to his name was probably the first, clearest one.

Truth is, my wife and I never really noticed. Our little boy was always happy, sweet, energetic, and fun-loving. He was constantly babbling and cooing. He seemed advanced mechanically and physically. But as we approached and passed his second birthday, others noticed. Or, I should say, another noticed. A close, brave loved one mentioned it to me first in passing. If you call his name, he did not respond -- he did not look. The first time it was called to my attention, it seemed to me a meaningless observation that resulted from nothing more that an energetic toddler with better things to do then to indulge the whims of over-parenting. I "tested" him on my own time--with varying success. He responded sometimes, sometimes he didn't.

Then something happened.

The same loved one brought the topic up again-- this time with more urgency. Again, I attempted to shrug it off with a glib reply which conveyed a clear message…I was not concerned about his hearing. And then it came… The lack of name responsiveness was not a concern about hearing, it was a concern about Autism. My crazed Internet research later confirmed that indeed one of the first signs of autism in a young child is the child's failure to respond to his name.

Still, I was not convinced. Unbeknownst to my wife, I covertly started a series of passive tests, calling the little man from different angles, in different tones of voice, at different times, and during different activities. Sometimes he responded. Sometimes he did not. All in all I would approximate that depending on mood, activity and level of animation, he would respond about 50 percent of the time.

As I was going through this process, I searched at length to find the official study to put my mind at rest, one that said it only meant autism if he responded less than 10 percent of the time, or 4o percent of the time, etc... I do not remember if I ever found an answer to the magic number question, nor do I know if one exists. But what I do know now is that my child, who has now been officially diagnosed with autism, responded when his parents called his name about 50 percent of the time, and less often when he was called by others.

I feel it necessary to end this post with a disclaimer. I can think of many, many reasons short of autism that a child would not respond to his name. Off the top of my head I could think of a few: playfulness, obstinance, focusing on something else, busyness, tiredness, failure to hear, problems with hearing, no desire to respond, etc... But if the failure to respond occurs with any frequency or regularity, a flag should be raised. If this applies to you, I encourage you to research further and further and to go back and read my post on early intervention and to call. It can not hurt.

CALL EARLY INTERVENTION, NOW!

Sometimes the fool who rushes in gets the job done. - Al Bernstein.

Before I delve into where we have been, what we have seen, and what we are doing now, I feel it is my duty to ensure that anyone with developmental concerns about a young child calls their local Early Intervention office ASAP.

I really can not impress that enough.

No doubt if you have searched the Internet vigorously enough to have found this post, you have read about the importance of Early Intervention. And, if you have read enough about Autism, I am sure that you have read that early detection and early intervention can dramatically improve the prognosis of those affected. I am here to reiterate and amplify that the first step for parents of young children with developmental concerns is to CALL EARLY INTERVENTION, NOW.

Later, I intend to go into great detail about the "developmental concerns" we had which caused us to call. We called when our little man was just under 2 and a half and only after we were clubbed over the head with it. But for now, if you find your self saying things like..."he just needs more time..." or "maybe its just a second child thing" ... or "my cousin had a son who didn't do that until after he was 3..." my vote is that you call EARLY INTERVENTION, NOW.

Why? It is an all reward, no risk endeavor. You get a team of qualified individuals to come to your house, play with your child in a manner that enables them to evaluate your child's development, and then tell you what they think. Best case scenario, you are an overly diligent parent of a child with no developmental delays. Worst case scenario, you are an overly diligent parent who caught developmental delays at the earliest point.

It is literally a no brainer. If you have any developmental concerns, you should CALL EARLY INTERVENTION, NOW!

Spread the word.

D-DAY (The Day of Diagnosis)

…but names will never hurt me..

Well, it is official. Autism. No bells. No whistles. No "not otherwise specifieds." Just Autism. An official name to label some of the -ISMS that we have seen in our spectacularly unique little boy. The net effect? At least we don't have to preface our discussions with the obligatory "…we'll we don't have an official diagnosis yet, but…"

Amazingly and thankfully, this D-Day was an unsurprising and anticlimactic event. My, how far we have come. Over a year ago, when it became clear that this A-word was a real possibility, we felt overwhelmed by the great unknown. We feverously searched the Internet, bought books, called everyone we knew, and in a panicked frenzy gathered as much information as possible. We had conversations in the middle of the night discussing strengths, weaknesses, and the future. But, thanks to the many, many people who were there for us, from our Early Intervention providers, to other families of similar children, to our family and friends, we now feel so encouraged and empowered that the day of the official diagnosis provided to us nothing but a name. Not an end, not a beginning, just a name.

And onward we go!

AUTISM/AUTISM SPECTRUM DISORDERS

Life is a tale told by an idiot
Full of sound and fury
Signifying nothing.

I used that quote to start this post-- not because I believe it (because I do not), but to segue into what I believe to be the meaning of the term “Autism Spectrum Disorders,” often abbreviated (ASD): full of sound and fury-- signifying nothing. I have read books, surfed the Internet ad nauseam, and talked to many people to try to get the best understanding as to what that term means-- and depending on who you read, an academic, a parent, a doctor, a journalist, the answer can be quite evasive.

The best definition I found for Autism Spectrum Disorder (ASD) was in the book More Than Words, by Fern Sussman, which stated the following:

Autism Spectrum Disorder is a term that is currently being used by many professionals to describe children who have difficulties in social interaction, play and communication. ...ASD isn't a medical term. But it is a convenient way of describing a large a diverse group of children who have similarities in the way they process information and understand the world.

Go back and read that again. ASD in not a medical term, but is a convenient way of describing a large and diverse group of children.

The purpose of this post is not to minimalize a diagnosis of ASD, nor is it meant to provide insight into the any of the many diverse diagnoses which fall under that large umbrella. Rather, it is posted as a reminder to me and to you that this “ASD” we are trying to get our arms around is not susceptible to a “one size fits all” definition. Symptoms of one child are not shared by all. Remedies which benefit one child, will not benefit all.

The diversity of the affected children make it clear that while one thought, idea, treatment or strategy may work for one child or family, it may not work for another. The importance is getting the most information out there to ensure that each family is aware of the all of the different options and can evaluate the ones that may work best in each individual situation.

THE WHY OF THE BLOG OF ISMS

Love paves the way to the joy of today And promises dreams of a brighter tomorrow ...to a forever of tomorrows.

This blog is inspired by my family and all of those wonderful people around me who have listened to me ramble about the fear we had as the word “Autism” slowly crept on our radar screen; about the the wonderful attributes our little boy has; about the “challenges” we face; about the little victories we achieve each day; about the hope; and, yes, about our favorite -ism: the optimism. To all of them I say: thank you. Thank you for listening and I hope this new outlet for me gives your ears a much needed rest.

In the interest of full disclosure, I should say that our little man has not been diagnosed with anything as of yet. Part of the problem with the exploding rates of Autism diagnoses is that in order to get an appointment with a developmental pediatrician in these parts, you must wait on a list of anywhere from 8 to 14 months or more. But the signs are there. We qualified for and received the wonderful benefits offered by Early Intervention (EI). And, our little man, now 3, is now attending a self-contained, full-day special education program. We have little doubt that our little man is “on the spectrum.”

There are two reasons I am writing this blog: For ME and for YOU. For me, writing about our family, our little boy, his big brother, and our experience, is therapeutic. If we are the lone tree falling in the forest, this blog is our sound.

For you, -- the parents, the grandparents, the concerned aunts, uncles, neighbors and friends, of a child “on the spectrum” or believed to be, who have stumbled onto this site, I write to empathize, to share, to encourage, to listen, to offer perspective-- and to let you know you are not alone. May you find an idea, some solace, some commiseration-- but most importantly, may you find hope and optimism. You are not alone. There are many out there with you-- who pray for you and yours, though you don't know us, who have had your thoughts, your doubts, your fears, your experiences, and your hope.

May we all find something through this miracle of modern technology that maintains our happiness and optimism.