On most days, blue is not my color, but today is not most days. Today is World Autism Awareness day, and one of the ways we bring attention to this cause is to wear blue. It was never our intention for Baker to know his diagnosis until it became important to know...which may be never. Honestly, we kept it to ourselves for a while. People just wouldn't understand...but I guess that's why we have awareness days.
So today, blue is very much my color. And I wear blue today with a greater awareness of Autism than I had on April 2, of 2017. I'm no expert in the matter, just a mom who has done my research, but as my awareness increases, I feel it is my duty to also increase the awareness of those around me...not awareness that ASD exists...but awareness of what the diagnosis actually entails (to the best of my ability, at least).
"Autism...that's like that Dustin Hoffman character...right?"
When most people hear Autism Spectrum Disorder, their mind's eye constructs an image based on experience. If personal experience does not generate any hits, they generally land on well known characters, such as Rain Man, Sheldon Cooper, or Carley, the non-verbal young lady from an episode of 20/20 who has benefited from the use of technology to communicate for her. And they would be right, in part, because each of these individuals exhibit ASD to varying degrees.
But relying on one experience to characterize a cognitive difference which has evolved from multiple diagnoses to one now defined on a spectrum, actually paints a highly inaccurate portrait of the individual diagnosed. For those on the spectrum, one size does not fit all; one size does not even, necessarily, fit most.
When describing autism, I often default to a quote well known to those in the ASD world. Dr. Stephen Shore explains, "If you've met one person with Autism, you've met one person with Autism."
He is Baker
My son, Baker, is one of many amazing and unique individuals with an ASD diagnosis. He if gifted, creative, compliant, and eager to please. He is loving, affectionate, has a significant capacity for empathy, is protective of his little sister, and has a heart for Jesus. He is not Rain Man. He is not Sheldon Cooper (though sometimes he has his moments). He is not Carley. He is not anyone you've ever met. He is Baker. From birth, Baker exhibited some quirks and delays, but all children develop differently, right? I didn't realize that his difficulties feeding, his delay in crawling and walking, or the fact that he barely spoke until he was 2 were signs or symptoms of anything at all. After all, once he began talking, he used full sentences and vocabulary well beyond that of a two year old...as though he'd previously lacked enough words to adequately express his viewpoints on life, and once he had collected all of the words he needed, he decided it was time. He was like that with walking too...and potty training...and drinking from a straw. He did these things well after his peers, but once he finally acted, it was as though he knew how all along.
Baker began reading at three, and when he turned four we enrolled him in the private pre-K program where he soared to the top of the class in his reading skills. Coloring, however, was another story. Baker would rather stack and line up his crayons than color with them, and it soon became quite evident that coloring was an exhausting task. Another challenge for Baker was playground equipment. He would only go backward down the slide, on his belly, and he refused to sit on the swing-set. Monkey bars and jungle gyms were also out of the question. Even so, he loved school. He had tons of friends in his class, he loved his teacher, and he talked about school all the way home on our daily drive.
Something else began happening toward the end of that year, and it was the first thing that really got our attention. Baker stopped eating. I don't mean like most kids who will only eat a few things. I mean, over the course of about six months, Baker's diet dwindled to white Wonder Bread (no crust) and water. When he would eat something he "trusted", he would often gag on the food and empty the contents of his stomach directly on his plate. Going out to eat, as you can imagine, became a bit of an ordeal. My mother encouraged me to talk to his pediatrician, who ultimately referred us to a really spectacular occupational therapy clinic.
It was from the physical therapist that we learned that Baker has sensory processing disorder, which occurs when the brain has difficulty filtering or interpreting sensory stimuli (smell, taste, touch, sound, and even visual stimuli like flashing lights). This explained his issues with balance, fear of crashing, preference for quiet activities, hatred of fireworks and camera flashes, and, of course, his dietary issues. The therapist also diagnosed Baker with Dyspraxia, a motor skill condition which makes it difficult for Baker to coordinate and plan his movements. Early signs include weak feeding reflexes in infants and delays in both fine and gross motor skills.
Baker attended occupational/physical therapy twice a week during his Kindergarten year, and we saw huge improvements in his coordination and muscle tone. Very gradually, he began incorporating more food into his diet, though he is still more limited than most children.
Toward the middle of first grade, however, Baker added yet another piece to the puzzle: severe anxiety. Baker's sensitivities to sound made it difficult for him to feel safe in large, loud crowds (such as the cafeteria and school assemblies...which he refused to attend.) His coordination limited his balance and physical activities. At the time he could not proficiently navigate staircases or catch a ball using both hands. And his self awareness of these differences made PE quite uncomfortable and nerve-racking for him.
Baker became significantly overwhelmed, specifically during unanticipated transitions and when frustrated by work or play. He would cry and hide, not like a temper tantrum, but more like the tears shed when you are at a complete loss for words or actions. It was time to bring a psychologist on board to help with this anxiety.
We took Baker to one of the best psychologists in the area, specializing in pediatric anxiety, ADHD and ASD. After observing Baker, the doctor asked if Baker had ever been evaluated for ADHD or Autism Spectrum Disorder. He had not, though I explained with certainty that Baker did not have ASD, because he makes eye contact (usually), and he's social, and he's full of empathy, and although he speaks very slowly, he's not robotic...The list went on and on.
That's when the doctor smiled and said, "Yeah, that's why it's Autism Spectrum Disorder." He's the one who introduced me to the quote, "If you've met one person with Autism...".
Sometimes, it Really Does Take Two
In that moment, I actually was not flooded with panic. I was not nervous or worried. Maybe the doctor was right. But if he was, what would that change? We already fully accepted Baker the way he was, so it wouldn't change him. If anything it would...and did...change me. It took TWO psychologists to get to the bottom of Baker's anxiety, attention, and sensory issues. Independently, each psychologist came to the same conclusion.
"Baker Christensen," one doctor wrote, "is a screening conundrum, and is the reason the writers of the DSM-5 amended the singular Autism diagnosis as one that occurs on a spectrum." Baker was formally diagnosed with high-functioning ASD in May of last year. But it didn't change how I see my son, rather, it increased my awareness. But some things did change.
Then Why The Diagnosis?
The diagnosis changed the way I quietly judged other parents at Target whose son appeared to be having a meltdown over what I assumed was something related to not getting his way. But what if I was wrong? What if the poor kid couldn't handle the lighting? What if he couldn't handle the crowd? What if there's a bump in his sock that for him feels like the equivalent to someone putting a tarantula on my shoulder and asking me to go all day and pretend there's not a furry arachnid sitting on me? And what if the parents are at a complete loss and don't know about sensory disorders, ASD, dyspraxia, etc.?
It changed the way I forced Baker to play along when other people would suggest he not leave the table until he ate a bite of the meat, or a spoon of the mashed potatoes. Rather than being embarrassed by the situation or frustrated by their unwillingness to accept what I'd tried for a year to explain about sensory defensiveness and vomit on the table, I became emboldened in my role as my son's advocate.
It changed my approach when I'd hear one of Baker's friend's greet him, and I would see him just keep walking, or when someone would hug him and he would keep his arms at his sides. He hugs Dave and me every day, and he kisses us and tells us he loves us, but with people who don't hug him daily, it didn't come as naturally. Before, I did not understand how this fun-loving, social child could be so aloof. In hindsight, these are cues many of us pick up on and develop through watching others. If, however, your brain was wired differently, you too may need direct instruction in what to do with your arms when you are hugged by someone who doesn't hug you every day.
Is ASD an excuse for misbehavior or a poor attitude, absolutely not. Those things are not tolerated in our home, and luckily, Baker is a pleaser. Awareness alerts us to the concept that what absolutely is outright defiance for one child, may actually be the result of a cognitive misfire for another. One seven year old refuses to eat his mashed potatoes out of a struggle for power. Mine refuses to eat his mashed potatoes because the texture in his mouth tells his brain that the item he is chewing is harmful to his body, engages his gag reflex, and causes him to throw up. It's not the same thing.
If I put a plate of cockroaches and toenails in front of you and told you to eat it, would you? What if you were hungry? What if everyone else ate all of theirs? What if I told you, "You cannot leave the table until you try a bite?" What if I threatened to take away your toys?
I'll tell you what I would do. I'd be devoid of toys and sitting at that table for a long, long time. I'd probably cry. I might even lash out. After all, my refusal to eat in no way indicates that I am not hungry. No matter how much I love you, no matter how badly I'd want to comply, my brain will send every possible fight and/or flight signal to alert my body that what's on that plate should not enter my mouth.
Because I Am Aware
I feel that, because of my personal experience with my anomaly of a child, I have a heightened awareness for how ASD operates on a spectrum. My awareness opens the door to educate others and to continue learning.
Because I am aware I also know...
MYTH: Autism is on the rise.
Autism Spectrum Disorder is not necessarily on the rise, as many would have us believe. Rather, the amended diagnosis and inclusion of a spectrum allows for the identification of more individuals who struggle with sensory and social disturbances.
MYTH: ASD is caused by vaccines.
The original author of that study actually recanted his claims. Unfortunately this was too little, too late, as even science is not immune to the court of public opinion where the subject is guilty until proven innocent...and is still considered guilty even after that.
MYTH: ASD is caused by poor parenting.
I did not cause Baker's ASD. Sadly, another myth revolving around ASD is that of a medical belief in the 1950s that Autism was caused by "Refrigerator Mothers," those who lacked warmth toward their children and failed to meet their needs. This belief was debunked when more studies surfaced regarding the brain chemistry of individuals with ASD, but as long as there are people who believe the world is flat and that the Mayan calendar predicts the end of time, there will be those who hold fast to the Refrigerator Mother hypothesis like a dog with a bone.
MYTH: Individuals with ASD don't want friends and don't feel emotion.
People with Autism are not automatons. Depending on the degree to which the individual is locked-in, (s)he may express a great deal of love and affection or may be unable to express his feelings at all. The desire to love and feel loved, however, is not nullified.
MYTH: Individuals with ASD cannot understand the feelings of others.
While one feature may be difficulty with social cues, many individuals with ASD can understand the feelings and emotions of others if given the time to process or if the information is clearly communicated.
MYTH: Individuals with ASD are intellectually disabled.
While intellectual differences may sometimes be a comorbid feature of ASD, most have average to above average IQs. In fact some of the most ingenius and creative minds were diagnosed with (or would have been, had the diagnosis been identified at the time) ASD. This includes names such as Mozart, Steve Jobs, Sir Isaac Newton, Thomas Jefferson, Bill Gates, Emily Dickinson, Andy Warhol, and Temple Grandin.
Because He is Aware
Last week, when he learned why today is the day we wear blue, Baker became curious. Of course, in true Baker fashion, he did some research. And naturally, the question that followed was, "Daddy, do I have Autism?"
The simple answer was, "Well, Autism is on a spectrum. Some people, like you, have it a little bit. Some people have it a lot. We all have things that make us different, and that's okay. We are all perfectly created the way God intended us to be."
For now, the simple answer is sufficient. But it will not always be that way.
I became aware because Baker was diagnosed. I continue to learn because one day, he will want to know more.
That's why, today, I wore blue.
