What a 6-year-old’s Question Revealed about ASD Prevalence
Autism Speaks, the largest autism advocacy organization in the United States, indicates that autism spectrum disorder (ASD) is a developmental disorder in which a child’s symptoms can present in subtypes that range from mild to severe (source). In the same way, the Iowa Department of Education describes ASD as a socializing challenge observed in children’s difficulty to communicate and interact with others. It also suggests that ASD can cause a child to perform repetitive activities and movements, become upset at changes in daily routine, and have unusual responses to certain situations (source).
A recent conversation I had with a non-autistic child, however, truly illustrated the recently magnified number of ASD cases within the last 2 decades.
On the first week of August, my sister who had recently given birth to her third child, asked me to give her older son Derek a ride to school. He wore his solid red polo tucked inside his khaki shorts. The bow-tied laces of his clean-white converse wiggled like a dog does its ears as he climbed the car seat and swung his feet back and forward. Then he asked:
“Uncle Martin, what is autism?”
Derek is a 6 year old, with a triangle-shaped face, a charming smile, large, dark brown eyes, tan skin, and a mouth full of “what’s more?” questions. He grew up next door to his dad’s niece, a 30-something mom to a 6-year-old, autistic boy. Until he was 5, Derek spent most evenings playing in the front yard with his younger sister and his age-sharing, autistic nephew.
“Why are you asking me that?,” I responded.
Derek put a shy expression on his face and looked at me in the eye.
“I don’t know,” he mumbled, and moved on with a game of Paw Patrol questions.
In that moment, I realized that I didn't know how to answer Derek’s question. I thought about the key word he mentioned and instead of formulating an answer, I was intrigued by the amount of times and places he must have heard relevant conversations. But what surprised me most was that at his short age, Derek had already used this new word that is so hard even for grown people to explain. What did that mean? Was ASD a developmental disability emerging so fast in children that it became a common conversation topic and part of a 6-year-old’s vocabulary?
In fact, “autism” as a simple word is very new. Compared to “I,” one of the oldest words in the English language, “autism” is in its early childhood with only less than 100 years of use. After being used to refer to children’s schizophrenia in the first decade of the last century, it was first used referring to its modern meaning of socializing challenges in the 1940s by researchers in the United States. Leo Kanner, a doctor at Johns Hopkins University, first used the word to describe behavioral characteristics of several timid and uncommunicative children (source). Summarizing the meaning of the word in his 34-page work, “Autistic Disturbances of Affective Contact,” Kanner concluded: "We must, then, assume that these children have come into the world with innate inability to form the usual, biologically provided affective contact with people, just as other children come into the world with other disabilities” (source).
Plenty more researchers also reported more conclusions in similar children after Kanner’s work, including a series of symptoms and other behaviors that consequently formed part of, at the time, other independent disorders. What was evident was that since Kanner’s times, the number of children reported with the disability had increased vastly around the world.
When Derek and I arrived at his school, with 15 minutes till first bell ring, Derek found one of his friends. He was a shorter boy that walked hand-held from his mom and headed to the school entrance. Contrasting Derek, he wore a navy polo, dark, skater shoes, and a fluorescent-green watch that caught my eyes from a distance.
With a voice that seemed to fade out when reaching the last syllable of every word, Derek’s friend talked about the morning chocolate milk at school and another of Derek’s classmates; a boy that “is not nice,” he said.
During the 10-minute-drive on the way to Derek’s school, my assumption had been that Derek learned “autism” from conversations he heard about his autistic nephew. A conversation with his mom suggested that another possibility was that he heard the word at school, which his autistic nephew also attends, or even in his classroom, where another boy has difficulty adjusting his behavior to the classroom’s rules.
“The school called me last Tuesday to bring Derek clean clothes because [the boy] peed on him and another kid,” said Derek’s mom, also mentioning Derek’s bite marks on his left shoulder. When I asked Derek, he said the boy “thought I was playing.”
While the short conversation with Derek’s mom gave me an idea about where Derek heard “autism,” the truth is that ASD cases have increased to high rates. In reported cases of autism in the United States, for instance, less than 3 per 10,000 children diagnosed with autism in the 1970s increased to a 30 per 10,000 children in the 1990s (source). And more recently, estimates from the Centers for Disease Control and Prevention suggested 1 in 59 children have been identified with ASD (source). To put that in perspective, this means that more than one child in every 3 classrooms in a typical American grade school will be autistic by these statistics.
Furthermore, although the ASD number of cases have already increased, optimal identification of autistic children could bring the number up to a greater digit, suggests Spectrum News. That is because by getting rid of diagnosing challenges, more children could be identified as autistic. The gap between boys and girls, where 1 girl for every 4 boys are diagnosed with ASD, could close, for instance. Or even seniors in the age gap, where people 60 years or older diagnosed with ASD are rare, could share children’s high rates under better ASD detection (source).
Among the many challenges ASD detection faces are doctors’, teachers’, parents’ and other individuals’ beliefs that ASD is primarily a boy's disability. However, the real challenge for more girls to be diagnosed in this case is in the expectation of boys to adapt to more social rules than girls since early age. Under these circumstances, boys are constantly told by parents and other social authorities to abide by more social rules by having more restricticted socially acceptable types of interests and behaviors than girls do. For example, while in Derek’s family it will be acceptable for his younger sister to misbehave when she loses a toy, Derek is more likely to be restricted of such behaviors in similar situations. In the case where Derek would not adapt to the social authorities’ behavior rules, warning signs of ASD are present.
Although this boy-to-girl gap in early studies brought the idea that higher risk of ASD was dependent on sex, in reality, there is no exact known cause for ASD. But it is generally accepted that it is caused by abnormalities in brain structure or function as brain scans show differences in the shape and structure of the brain in children with autism compared to non-autistics (source). Some other theories also include that childhood vaccines cause ASD. But this is not medically proven, and can result in children contracting a rare and dangerous illness, says the Iowa Department of Education. Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors such as viral infections, metabolic imbalances and exposure to chemicals. What is evident is that ASD cases, although not a contagious airborne infection in any way, are more common every decade and thus ASD has become a growing topic of conversation in the world.
But although ASD cases have absolutely increase to a point, the high rate of cases found in earlier decades does not necessarily mean children are developing more ASD now than in previous decades and with such dramatic rates. A recent study in Danish children by JAMA Pediatrics suggested that 60% of the increase in the observed occurrence of ASD in children is in large part attributable to changes in reporting practices, and an expanded diagnostic criteria that revealed previously-unidentified autistics in the country (source).
Although JAMA Pediatrics is not a general representation of global statistics, for the United States recent changes in the diagnosing process and more ASD awareness could help explain the gap between ASD cases in children and in adults:
DSM-5, or the The Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition), provides a diagnosing tool for mental disorders. And according to the American Psychiatric Association, in the DSM-5 Autism Spectrum Disorder is actually not a new disability, but a name given to reflect 4 previously independent disorders that have been found to actually be part of a single condition with different levels of severity. This meant that children who according to the previous diagnosing criteria would be diagnosed with autism, Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder, now are being diagnosed with ASD instead (source).
As a final note, with the 2018 ASD report being twice as great as the 2004’s, opportunities for the nation to consider how to serve families facing a lifetime of support for autistic individuals has grown as well. In June 2014, researchers estimated the lifetime cost of caring for an individual with ASD is as great as $2.4 million with estimates that the United States is facing almost $90 billion annually in costs for the disability (source). Large and startup organizations’ support, however, have served autistics and their families reducing the costs and providing moral support. And while the number of autistic children is likely to increase, so is the support offered to their families.
Writer’s Note: After the ASD prevalence Derek’s question revealed, the new question was: With the increased rates of ASD and other developmental disorders, how are public schools helping autistic children, and teaching awareness to their students?