cartoon of a person with question mark

Butterflies. Anxiety. Sigh… What will their response be? Will they be extremely upset and not agree? Or will it make sense to them?

…Another not so clear-cut diagnosis of autism spectrum disorder (ASD).  Yes, I agree that his behavior was not typical for his age, but does it really fulfill diagnostic criteria?  Let’s see.  He has language delay… check.  He takes a long while to respond to his name… check.  Yes, but he does respond after the 6th time and was usually distracted with a toy.  I had to work to make eye contact… check.  Yes, but he was so interested in all our toys.  He would look at me when I got on his level.  Oh, he did point to request! Yea, but my colleague says that it was to meet his needs only. Ok, so he may have some delays in his social communication. 

Repetitive behaviors?  Well, he did flap and jump a few times when we brought out the bubbles.  Does that count?  Yes… check.  What about his restricted interests?  He did play with the cars, but what toddler boy doesn’t like cars?  Sometimes I did even get him to play with something else.  Well, he needed a lot of prompting for pretend play; he really only pushed the car and crashed it into other cars.  Repetitive play and restricted interests… check.  No reported or observed sensory concerns… no check.

Ok, so he was referred for evaluation for possible Autism Spectrum Disorder (ASD).  His Early Intervention (EI) team is concerned, but his parents aren’t so much.  However, he did score high on his Autism Diagnostic Observation Schedule (ADOS) and meets DSM-5 criteria. Then why are you questioning it?

“Why are you questioning it?”  This is a common query in my head.  Sometimes it is clear, but other times it is not.   Sometimes when you speak to his EI team, they may convince you that he has ASD.  However, the child may show interest in you and others that makes you question it.  Sometimes, he just seems like a busy kid that makes you work for his attention.  This may make you more concerned for early signs of ADHD.  Or you may wonder if it is just delays in all his skills, especially his intelligence.  If we really think about it, a child whose brain is younger than he is, may appear younger socially and need a lot of effort to get his attention. The reasoning often becomes circular.

As a new Developmental-Behavioral Pediatrician, I have struggled with this worry.  With each child, I find myself asking: “Are all toddlers who flap, toe walk, and take just a little too long to respond to your request really autistic? Or could it be something else?”  I have relied on my colleagues to help me answer these questions, but the question has not gone away.

Most recently, I read an article about some children incorrectly being called autistic.  Although the article suggested that “these children were less likely to be diagnosed by a specialist,” it did make me wonder if I am not the only one with these questions.  It also made me ask, could children that live in this gray-zone be called something else that we may or may not yet know about?

As the amount of children who are called autistic increased over the past 2 years, I began to wonder how many of those children fall into this gray-zone.  I wonder how many people are still in the gray-zone without any label.  I also wonder if I will ever be able to answer these questions without any doubt.

For more information about the article, please see: Autism May Be Over diagnosed in the United States

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