My Thoughts After Reading “New Survey Method Finds More Kids With Autism”

Once, shortly before my son Alex was diagnosed with Autism, my husband and I were talking to a friend and describing some of the odd behaviors we were seeing in our child. She was amused. She even used the phrase, “Oh, a dictator in diapers!” as if his unusual habits were usual and teasing that he was just a spoiled brat. I think the only thing she knew of autism, and she brought this up in the conversation after Alex was finally diagnosed, was the 1988 movie “Rain Man” with Tom Cruise and Dustin Hoffman. It seems ironic to me now that the movie debuted the same year Alex was born. I’m wondering if, like me, most people had never heard of autism, let alone knew anything about it or understood how it affected the families of those diagnosed with it. We had to explain autism to virtually everyone we met.Now, almost three decades later, everyone, literally everyone, I talk to either has or knows someone with an autistic family member.

In an article I recently read titled “New Survey Method Finds More Kids With Autism,” the author, Maggie Fox of NBC News, stated “a new government survey finds that more than 2 percent of U.S. kids have been diagnosed with autism–or 1 in 45 children aged 3 and older.” Wow! That is an astounding statistic considering when our son was diagnosed in 1991, the rate of autism was 1 in 10,000. What has caused this huge increase still seems to be a topic of debate: is it because doctors have changed the criteria for diagnosis, or is autism truly an epidemic? Well, to begin with, it seems that the “survey method” mentioned in the title is in regards to surveying the parents. Epidemiologist Benjamin Zablotsky says that the “way we ask the parents about autism spectrum disorder can have an impact on the way the parents respond to the question.” Doesn’t that mean the answers are subjective, then, not objective? A therapist or psychologist does not judge the prevalence of, say, depression, by asking a parent about how depressed their teenager is. So it seems like a strange way to try to come up with numbers of children who have autism by merely asking questions of their parents.

As the estimated prevalence of ASD increased significantly in 2014 (2.24%, up from 1.25% in 2011-2013), and the prevalence of “other developmental disorders” declined significantly (4.84% in 2011-2013 to 3.57% in 2014), it sounds as though doctors are diagnosing autism more frequently than other disorders in children. This makes me wonder if something else is possibly going on, either in children’s brains, or in their behavior. Perhaps two decades of infants and toddlers being raised in daycare centers, eating diets of pre-packaged, highly processed foods, and spending too many hours a day with electronic devices is starting to show some negative effects. However, what makes me wonder more as I read this article is how these children are being evaluated for diagnosis.

Even though each year the number of cases diagnosed goes up, there seems to be a sufficient amount of evidence that points to differences in the survey method being the reason for a higher rise in autism diagnoses and not because there are more cases of autism. “NCHS [National Center for Health Statistics] found earlier this year that as many as 9% of children diagnosed with autism don’t actually have it.” As Laurie Alderman states, “These kids have always been there. I started teaching in 1979 and I have always had students who were a little quirky, a little odd, a little rigid.” The professionals in this article seem to agree that children who today are regarded as being on “the spectrum”, in years past would have received a very different diagnosis, such as intellectual disability or mental retardation.

Child neurologist Dr. Max Wiznitzer reports “there’s more money attached to a diagnosis of autism than a diagnosis of developmental language disorder . . . or a learning disability to give you an example.” If children are being diagnosed with autism but don’t really have it, that also causes me to wonder if people are seeking out diagnoses for their children, just to get more services for their child. I hope that is not the case, but Dr. Wiznitzer’s comment seems to hint at the possibility.

Apparently, there has been a major rise in the diagnosis of autism in 8-year-olds – specifically a thirty percent rise between 2008 and 2010. This surprises me that a child is not even labeled “autistic” until their 8th year of life since my son, who exhibited unusual, even abnormal behaviors, was diagnosed with the same condition at 2-years-old. It didn’t make sense to me until just the other day when a woman was telling me about her friend whose 11-year-old daughter had just been diagnosed with autism. At first I was baffled, until she explained that they’ve been going from doctor to doctor, trying to find out exactly what was going on with her child. For many years they tried to understand why their daughter could only understand three words at a time (my son exhibits the same symptom) and they finally got their answer. I suppose what I wonder about the most after reading this article is how are children who attend regular classes, drive cars, go to college, have careers, and get married, getting diagnosed with autism regularly while this couple struggles for several years to get a straight diagnosis for their daughter who has what I believe to be a very specific and major symptom that would actually disrupt a normal lifestyle of maintaining relationships and a career – only understanding three words at a time. That is what leads me to believe that this may be the result of the doctors, therapists, and psychologists as individuals deciding on their own terms what constitutes a diagnosis of autism.

There can be some overlap if a child has several diagnoses. I believe this practice of lumping everyone together on a “spectrum” does a disservice to individuals like my son. He’s not a little “quirky”, “odd”, and “rigid”. He is profoundly disabled. As the article states, “Autism spectrum disorder refers to a large range of conditions, from the relatively mild symptoms of Asperger’s to severe and profound intellectual deficits and an inability to communicate with others.” I’ve never cared for this categorization since it’s institution a few years ago. When I tell someone my son is autistic, they almost always bring up their nephew/neighbor/boss’s son or daughter who is “autistic.” And almost always it is explained to me that this son or daughter drives a car, attends college, or actually has a job, etc. This is in stark contrast to my son who cannot tell you his name, urinates on the floor twice daily, at least, and writes on the walls as soon as he has a pen in hand. I do not point this out to claim my family’s and particularly my son’s issues are greater, but simply to explain that there is a vast difference here that I think needs to be addressed for the good of both sides of the spectrum.

I remember when Alex was first enrolled in school, the special ed teachers would often talk about the “least restrictive environment.” The idea was for each child to be in as normal a school placement as possible, given their abilities. If a student could be in a regular classroom, then the school would provide the necessary modifications to make that possible. My hope is that every child will receive the best learning environment for their growth and development. I don’t mean to diminish what other parents are going through with their children who are on the higher functioning end of the spectrum. I simply don’t understand why professionals are willing to lump together these children when it seems to me they should be looking for different diagnoses that will help these children receive the specific treatment they need and deserve.

 

The Article Web Address: http://www.nbcnews.com/health/kids-health/new-survey-finds-1-45-kids-has-autism-n462596

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