Today is the first day of April. In honor of that, I would like to talk to you about something very near and dear to my heart… Autism Awareness.
As you may know, April is Autism Awareness month in the United States. Please indulge me by remembering the following statistic during the entire month of April...
Autism affects approximately 1 in 90 children, totaling an estimated 673,000 in the United States. ~ The Center for Disease Control, October, 2009
That’s just in the United States. When you add hundreds of thousands of children from other countries to that number, it’s a scary statistic. What’s worse is that the numbers keep climbing and we are no closer to solving the mystery of what causes this life-altering neurological disorder.
Beliefs about what causes autism range from sound considerations to extremist conspiracy theories. Some people even refute that there is an epidemic of autism growing in our communities… that the increased statistics are simply a result of earlier and better diagnoses. While I certainly don’t subscribe to the first part of that (I do believe that we are in the midst of an epidemic), I do concede that children on the spectrum are being evaluated sooner than they were, say, ten or fifteen years ago. And research has shown that the earlier these children receive therapeutic intervention, the better their chances are both academically and socially.
Okay, so we don’t know what causes autism. We don’t even know if we have the power to prevent it or not. So what’s the point of all this talk about “awareness?” The truth is that we all need to be aware… aware that autism isn’t mythical. Its real, it exists, and we must be on guard for the signs and symptoms of it in our young children. If you don’t have children of your own, you should still be on the alert. Autism may strike your niece, your nephew, your grandchild, or the children of your friends and neighbors…children that you know and love.
One in ninety isn’t an abstract number. It means that with the way things are going, someday and in some way, autism will eventually touch all of our lives. I no longer see the growing incidence of autism as a mere statistic. The potential for autism is a monster hiding in every child’s closet. I didn’t know there was a monster in Billy’s closet; I wish to God that I did. There were so many things that I would have done differently… but, I simply didn’t know. To me, autism was something that had been ever so briefly touched upon in my Developmental Psychology class… a rare psychological condition caused by emotionally distant mothering. Hardly something I needed to worry about in my own family!
I was totally unaware of the danger.
And so, undetected, the monster lived in Billy’s closet. It must’ve been there since the very first day we brought him home from the hospital as an infant. Night after night, when the rest of the house was still, the monster would crack open the closet door and slither up to my son’s crib. He would stare, greedily, at the tiny sleeping baby and whisper, “Just a few months more! When the time is right, you will be mine!”
Then he would creep back into the closet to wait.
I often wonder if he would peek through a crack in the door and watch as I rocked in the chair, nursing my son and snuggling him to sleep. Did he spy on me when I brought him into the room wrapped in a towel, chubby little body still damp from his bath? Did he listen while I cooed to him and note how Billy smiled and laughed as I powdered him and dressed him in his onesie and footed pajamas? Did the baby’s happy babbling make him cringe?
“That’ll be the first thing to go,” the monster vowed.
Months would pass. The monster liked to slip downstairs and ooze his way over to the playpen where Billy was sitting and playing with his toys. He winced when the Billy pressed the buttons and sang along happily to the tune of the Alphabet Song.
“Mama! Mama!” he called as he pulled himself up to a standing position and pointed toward the kitchen.
The monster smiled. “Soon you won’t be calling for your Mama,” he thought with a sneer. “And you won’t want to play with those toys, either!”
And, ever so patiently, he went back to the closet to wait.
More time passed. Then came the day the monster had been waiting for… the day he would begin to steal my child away from me. If only I had known that he was waiting for us when we returned home from that fateful visit to the pediatrician’s office!
Both Billy and Tricia had been sick with colds when it had been time for Billy’s one year-old check up. So, I had cancelled the appointment. Time flies when you are busy with a one year-old and a three year-old, working part-time and trying to take care of a house. Before I knew it, six months had passed and it was time for Billy’s eighteen-month appointment. The doctor flipped through the chart and noted that because we had missed the one-year appointment, Billy was behind in his vaccination schedule and would have to catch up. She left the room and returned with several syringes, plus an oral vaccine.
Forget the fact that I’m a nurse; something tickled my mother’s intuition. I looked at all the syringes and asked, “Isn’t that an awful lot to give him all at once?”
“No, he’ll be fine,” the doctor answered. “Just give him some Tylenol when you get home.” And as I held my son’s little hand I stood there and let her squirt the vial into his mouth and inject the multiple vaccines into his chubby thighs. “There!” she said. “Now he’s all caught up… we’ll see him again for his two year visit…”
By the time we made that next appointment, Billy was gone. Well, the Billy that I had known and loved was gone. It was if my baby had been spirited away by the monster and a changeling was left in his place. Ever so slowly, ever so steadily, Billy changed after that eighteen-month visit. This “new” child no longer interacted with me; he barely acknowledged my presence. His vocabulary shrank and he took to making repetitious sounds instead. He no longer played with his toys; rather, he preferred to walk around and around and around the room just holding a single object in his hand. Even his style of walking changed… he walked on tip-toe all the time and had a habit of flapping his arms up and down, especially when he got excited.
We first noticed this when we would pop in a movie or turn on some music. He would jump up and down in place and flap his arms and squeal with delight. In our ignorance, we thought this was cute and dubbed it his “dance of joy.” Little did we know that it was really the Dance of Autism.
At the two-year appointment, the pediatrician asked the usual questions about developmental milestones. I was concerned about my child’s inability to perform age-appropriate tasks… tasks his sister had mastered by the same age:
“No, he doesn’t make three-word sentences.” (Anymore)
“No, he doesn’t stack four blocks.” (Anymore)
”No, he doesn’t feed himself with a spoon.” (Anymore)
Again, the pediatrician waved it off. “Boys usually develop slower than girls,” she reassured me. My mother told me the same thing and I tried not to worry about it. Funny, I guess we all hear what we want to hear.
By the time Billy was two and a half, I knew something was really wrong. This time when the pediatrician began asking me about words and blocks, I flat-out told her that I had concerns about Billy's speech and behavior and I requested an evaluation. I remember the next few months as a blur. I think my brain wants to keep them that way. It was a painful time.
The monster was revealed… and its name was Autism.
Fast-forward several years to a family gathering. I’m sitting with my sister who is ten years younger and has just had her third child… another little boy. We watch as all the cousins run around playing with each other in the back yard. Well… all except for Billy, who is content to swing on a swing and hum to himself for as long as we will let him. He laughs and tosses his head back as the breeze blows in his face. He seems happy, but he might as well be the only child there for the lack of interaction he will have with his cousins that day. My sister and I chat about how her oldest is doing in kindergarten. Suddenly, she turns to me. Her eyes are moist and her voice quavers a bit.
“You know, I will always thank Billy for saving Liam,” she confides. “If it hadn’t been for Billy, I never would have known anything about autism.” She puts her hand on my shoulder and the tears begin to flow. “I sometimes see traces of autism in Liam’s behavior…” (My nephew has a bit of the “Little Professor” syndrome so common in Asperger’s and the slightest touch of OCD.) “… I’m certain that if we hadn’t done what we did, he’d be just like Billy.” Now my own eyes begin to fill.
“Yes,” she nodded, “I will always thank God for Billy and will always pray for him, and for you. He is so lucky to have you for a mother.” We hold hands and I understand what she is saying, much more than she will ever know. She is thankful that she had the gift of awareness and the chance to keep the monster locked away in the closet forever… a chance that I didn’t have because of my ignorance.
After Billy’s diagnosis, my sister dove into extensive research about Autism Spectrum Disorders… even more extensive than mine. (I was too busy dealing with our situation to spend that much time reading up on it.) She had just had her first child and she was scared. Not only was her nephew autistic, she had discovered that one of her husband’s cousins was on the spectrum as well. If the genetic predisposition was there, then what could be done to reduce the chances of her child(ren) developing autism?
One of the theories about autism is that certain children are born with a genetic predisposition to autism. They are exposed to some sort of neurological insult at a vulnerable time in their brain development, which triggers the development of the disorder. Many researchers believe that childhood vaccinations provide this neurological insult. (Conversely, many do not.)
To me, this seemed to make a lot of sense. Could it simply be a coincidence that Billy’s symptoms began just after that pediatrician’s office visit and subsequent injection with multiple vaccines? Possibly. Could it be a logical conclusion that, while beneficial to preventing childhood diseases, the simultaneous administration of multiple vaccines to a child with both an immature nervous system and a genetic pre-disposition towards autism could damage the brain and trigger the development of the disorder? In other words, are multiple vaccines just too much for these little bodies to take? Again… it does seem possible.
Could altering a child’s vaccination schedule prevent such a brain injury? Well, it’s not a formal research study, but I’ll tell you this: after Billy, all four of my sisters asked their pediatricians to spread the vaccines out and administer them only one at a time. If their pediatrician balked, they found another pediatrician.
Yes, it is more inconvenient. Yes, it means a few more dollars spent on office co-pays. And while I would never recommend that parents not vaccinate their infants, there seems to be no harm in spreading the vaccines out over time. As well, there seems no harm in advising people to make sure their children take modest vitamin supplements to support their neurological and immune systems.
I honestly don’t know whether it has helped or not, but thankfully, not one of my ten nieces and nephews has been visited by the monster.
So when I think about Autism Awareness Month, I personally think about two things:
1) I tell everyone I know who is having a baby that it is a good idea to spread out their vaccinations, and
2) I try to educate people about the signs of childhood developmental delay or disorder. The earlier the intervention, the better. Perhaps if I had known more, Billy could have received therapies before the age of three.
To learn more about the “red flags” of autism spectrum disorders, please visit the website of Autism Speaks:
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