Wednesday, April 5, 2017

Autism and Me

As you probably know, Ashlee Shades is a pen name for my work. 

But behind the name is a very real person – a daughter, sister, wife, mother, and friend. I have goals and dreams. I have emotions and feel deeply. And one of those things I feel deeply about it the awareness of Autism and Autism Spectrum Disorders (ASD). 

Why do I feel so much for this cause, you ask? Because my youngest son has been living with it since he was young, and diagnosed when he was almost 4.

 You see, if you grew up as I did then you probably have a vision you think of when you think Autism: a person who doesn’t speak and can’t do anything for themselves. But I have to let you know that Autism & ASD go so far beyond what you see. I didn’t know it until my child became one of those statistics. You know, that time when “It will never happen to me” actually does happen? Below, I will share with you my personal story and experience with this well heard of but still little known of “disorder”.

 I became a mom when I was 22 years old to a beautiful baby boy. As he grew, I celebrated all those milestones as he met them: first word, first step, first time sitting up without assistance. He met them all before the “average” age. He was so very smart and energetic. When he was just over 18 months old I found out I was expecting my second child. My youngest came into this world on a chilly late afternoon in mid October 2005.

 My youngest son was also meeting all those major milestones, but at a later age than my oldest did but well within what the physicians deemed as the average age range. He said “mama” for the first time on Mother’s Day 2006. Talk about exciting!

 I was a proud mom of two amazing little boys. (Now, I am a proud mom of two amazing young men). They were and are my life.

 One day, ‘S’ (my youngest) stopped making eye contact. He was around 2 years old at the time, and no matter how many times I said his name he just wouldn’t look me in the eyes. He would look in my general direction, so I knew he was hearing me, but the eye contact was gone. I overlooked this and brushed it off as par for the course for a two-year-old.

 Then ‘S’ stopped playing as he used to and instead, he began organizing his toys – usually the little box cars and mega Lego blocks. He would line them up according to size, shape, and color. And don’t you DARE touch it or you would ignite a tantrum like you’d never seen. Later, this organization trickled to his food. He stopped eating foods that had any seasoning other than salt, and even then it was the same thing: chicken with pasta. I had to vary the way the chicken was made, but it was always seasoned the same and the pasta could NEVER have anything other than a bit of butter with salt, or he would not touch it AT ALL. ‘S’ also refused to eat on any plate that was not his green section plate; and he would not use anything other than the matching bowl if he ever ate soup (rarity) and cereal (another rarity).

 ‘S’, around the age of three, stopped talking in full sentences. By this time, I knew something was going on. Not only did he stopped speaking in sentences, he also covered his ears with loud sounds, ran away from butterflies, and would not go outside if a lawnmower was in use anywhere within hearing.

 I knew it was time to seek advice from our family doctor who then referred me to a pediatric psychiatrist. After rounds of testing (If your toddler has never had an MRI, let me tell you it is one of the worst things to have to watch as they prep them), there was a diagnosis. Ready for it? Idiopathic Autism Regression. In layman’s terms: Autism without a known cause or explanation that occurs “out of nowhere”.

 I remember that day in July 2009, driving home with my mom in the front passenger seat and ‘S’ sleeping in his booster seat in the back. I was crying, feeling like I had failed my child. He lost his ability to communicate with me. How long had he been “trapped” within his own mind? How long had he been feeling lost because he couldn’t express his feelings to me like he used to and was therefore assumed to not have them? I was a terrible mother!

 But that day changed my life for the better. It forced me to open my eyes to a world farther reaching than the small little box I assumed it was – that it WAS for me, until July 13, 2009. That was the day that my mom’s words of “The world isn’t so black and white,” actually hit me. The world is a rainbow. The people in it make up the full picture. Without the variety of personalities then rainbow would not be the vision it truly is.

 So, with that diagnosis in mind I began my quest for knowledge. You have probably heard the statistics of 1 in 66 will be diagnosed and that boys are more likely to be diagnosed with an ASD than girls. You have probably also heard the controversy over whether science has or has not linked ASD with vaccinations. But what you do not hear of as often, what many forget to realize and understand is that my son isn’t science, he isn’t a statistic, he is a very bright, exceedingly intelligent, passionate, caring young man who loves animals, the world, and art.

A recent sketch by 'S' - age 11 years.

 ‘S’ may not have had the ability to make personal connections and develop friendships when he was younger as many kids do, which excluded him from many play dates, but he was advanced with math, reading, language arts – he was at 4th and 5th grade levels at the end of 1st grade. He may not have played kickball at recess in elementary school, but he wrote short stories and drew pictures that were displayed in galleries and in school shows. He may not have been able to communicate verbally,
but he managed to express all of his feelings through art, which speaks to so many on a deeper level than words ever could.

 ‘S’ hated taking a different route to school. I always had to take the same roads, leave at the same time, and park in the same general area every time I took him to school. ‘S’ did not see the sense in starting in the fresh foods section of the store and working our way to the checkout lanes from there because to him, the food would not stay as fresh according to him, so I changed my shopping routine (which does make more sense, right?).

 I could stay here for days, weeks, sharing stories with you about how ASD has affected us, how it has changed us, but I won’t.

 I will, however, share with you a few things: it is not a “life-sentence”. Not ALL people with an ASD will be the same any more than you or I without an ASD are. They will not express themselves in the same, but then again, neither do you or I. They do like patience. They do like acceptance. They do deserve them, just as you or I would like and want and deserve.

 The day my son received that diagnosis changed our lives, yes. But it was only for the better. Because that was the day that, while we had long road ahead of us with educating ourselves and growing as people, we had our eyes and hearts opened to the bigger picture this world is. And while I have been blessed with many beautiful people in our lives who have helped us in our journey and made it smoother, not everyone is as lucky. Not all cases of ASD are a “high functioning” as my son’s case is. Many parents have a harder struggle, not just in receiving a diagnosis – fighting for theirs -  but also in educating themselves with what it means and learning where to go.

And while science has done much in the way of finding out possible causes, there is NO CURE for this, yet. There are treatments, however.

But in my opinion, a “cure” is not what is needed most. What is needed most is more caring, compassionate, understanding, and patient people who are willing to understand and accept that this world is bigger than they are and not everyone fits in the “normal” or “average” box; and that what society deems as “the way” is NOT the ONLY WAY.

The world is a rainbow, people, and I am blessed to be the mother of two children who make up a portion of that beautiful gift from nature.

For more information on Autism/ASD and how you can help, please visit AUTISM SPEAKS.


  1. I can't find the words to adequately describe how profoundly this touched me, Ash. You're an amazing woman in so many ways, smart, compassionate, loyal, and now I can add enlightened and courageous to the mix. I adore you.

    1. Aww, Shelby! Your constant support and encouragement means more to me than you know. Thank you so much! I adore and admire you. <3

  2. An incredible story that will touch many hearts. Life isn't easy and learning how to live it is another. Hugs

    1. Thank you, sweetheart! You are right, life is hard as it is. Learning while living is another level. Hugs to you, too! <3

    2. My wife knows all to well what it is like to watch your normal son disappear, he was 23 months when diagnosed. I met my stepson when he was 5 yrs old, I learned quickly how autism affects not only the child but the whole family. Its not one size fits all, each child with autism is different from the rest. Ashlee thank you for sharing why Autism Awareness is so special to you, It's special to my wife and I well.

  3. My wife knows all to well how it feels to watch your normal son stop looking at you,stop talking and not want to eat his favorite foods anymore. My stepson was diagnosed at 23 months and I met him when he was 5 years old. An autistic child changes everything on how you raise a child. I'm amazed how far he has come in the 18 years I've known him, it's unfortunate most of society doesn't understand kids with autism so they are afraid of them. I could go on forever about helping raise a child with autism, thank you Ashlee for sharing why Autism Awareness means so much to you.

    1. It is my pleasure to share part of my story here. Thank you for taking the time to both read and share a part of yours. Your son (when someone helps raise a child I remove the "step", I hope you don't mind) must be a remarkable young man. I wish you and your wife many blessings as you continue to help guide him through adulthood.

  4. I admire you, Ashlee for so many reasons. But this. And this post. It makes me proud to call you my friend. Thank you.

    1. Aww. Thank you so much, sweetheart! So blessed to call you my friend, too. <3