What to Do if Your Child Has Challenging Symptoms but No Official Diagnosis

Your child has challenging symptoms, but no diagnosis. That means no official services, and plenty of frustrations. You know your child is different, yet it would be so much easier to deal with the difference if there was a label attached. Here’s help.

What happens when your child is struggling but doesn’t have a diagnosis? It’s so much easier for parents to explain their child to a school, doctor, or coach when there’s a label to go with the behavior: “She has ADHD, please cut her some slack,” or, “He’s on the autism spectrum, please help him make friends.”

But what about the child who doesn’t make the cut?

Take Carly, a cute 8-year-old redhead with a gap in her front teeth and a perpetual grin. Her mother brings her in to be tested because she simply is having a hard time in second grade, but a full evaluation reveals that she does not meet the criteria for any disorder. She doesn’t have ADHD or organization problems, and she is not lagging academically. But one thing stands out: Carly is annoying. She talks a lot, laughs too loudly, and is bossy. She’s driving her classmates, teachers, parents, and everyone else crazy.

And then there is Max. Max has an IQ of 82, in the “low average” range. He is slower than most of his classmates, and is also very immature. His peers are starting to outpace him socially. By age 10, Max is an outcast. He does not meet the criteria for intellectually challenged and he has managed to learn his academic skills with a lot of tutoring, so he is not eligible for any services. Max is not different enough.

Or Maria. Maria is a 6-year-old firecracker. She has tons of energy, is difficult to engage, and is only happy when she’s moving. An exceptionally intense child, Maria is a voracious learner but falls apart when she doesn’t get her way. Intense? Active? Emotional? Absolutely. Diagnosis? None.

Carly, Max, and Maria are what I call “in-betweeners”—kids with challenging symptoms that don’t meet criteria for a specific diagnosis. Annoying to be around or slower to learn or intense and active, these are types of kids who are challenging to raise and even harder to teach, but don’t meet diagnostic criteria, so they don’t get a label.

Some experts call this phenomenon “shadow syndrome,” as in a mild form of a specific diagnosis…but not quite. I prefer, however, to see these children as in-betweeners because it’s a positive term, unlike the slightly diabolical sounding shadow syndrome. In-betweeners are kids who don’t quite fit in. Their parents have a special set of needs, too.

Why Is No Label Sometimes Harder Than a Diagnosis?

When a child is atypical but does not meet a diagnosis, the parents can feel isolated and at a loss. You know your child is different, and you’re relieved that there is nothing more serious going on, yet it would be so much easier to deal with the difference if there was a label attached. Why? 

Labels lead to services. When your child is diagnosed with a specific disorder, there is usually a designated list of services they are entitled to, either through the school district, a regional center, or through a private-pay system.

Labels lead to awareness. For example, when your child is on the autism spectrum, you can educate yourself about the disorder. There are websites, books, support groups, and specialists at your disposal. Having a diagnosis can also help a denying parent be more accepting about his or her child.

Labels lead to understanding from others. Most people now know that having a diagnosis such as dyslexia, ADHD, autism, or processing disorders doesn’t mean that there is something wrong with your family. These are neurodevelopmental disorders that a child is born with.

In-betweeners and their parents do not have these advantages. Instead, they are subjected to head-shaking and judgment from others who think, “What is up with that kid!” or “These children are just not being parented right.” As if parents needed more stress!