Something was horribly wrong.
The boy could read, but when he tried to talk to his parents, all he could do was quote lines from his favorite movie, Finding Nemo. When his family got together with friends who had kids the same age, he would hang out on the periphery — watching, but unable to join in. He communicated by using the magnetic letters on their refrigerator to tell his parents what he was thinking. He covered his ears during emotionally intense scenes in movies and TV shows.
His parents took him to the pediatrician. He tested the boy’s hearing, told his parents it was fine, and that their child was just a late talker. So they waited. They kept asking their friends what they were doing wrong. Their friends were focused on the fact that the boy could read. At 2 ½! What a smart boy he clearly was! Clearly his parents were just being overly competitive.
Finally when he was 4, his preschool teacher told his parents that she thought he needed to be evaluated by a neuropsychologist. When she told them she was shaking because she was so frightened of how they might react. They were grateful to her for being so brave — they had long suspected something was wrong, but no one would listen. The neuropsych evaluation was the beginning of a long series of diagnoses, each of which have helped the boy’s parents to better understand and help their creative and hard-working child.
- At age 5 he was diagnosed as gifted, but with an expressive-receptive language delay that put him in the 5th percentile for language.
- At age 6 he was diagnosed with ADHD-inattentive type.
- A few months later, he was diagnosed with developmental coordination disorder (also called dyspraxia).
- At age 7 his parents learned that he struggled with social pragmatics.
- At age 9 he was (finally) diagnosed with Asperger’s Syndrome (now called Autism).
- At age 13, he was diagnosed with a generalized anxiety disorder.
The scary thing? All those diagnoses were accurate. But correctly diagnosing each one was not possible without addressing the issues inherent in the previous diagnosis. Until you address the most obvious issues, you can’t even see the issues the more obvious ones are masking. I call this “peeling the onion.” To help you understand, I’m going to peel the boy’s diagnostic onion.
Peeling the Onion
- Expressive-Receptive Language Delay: The boy wasn’t talking when his same-aged peers were speaking in sentences. That was clearly a big problem for him. Expressive-receptive language disorders can occur in isolation. Kids who cannot speak are often frustrated which leads them to act out or withdraw. And when a kid cannot understand what he is supposed to do? He can look very inattentive. Think about the typical preschool classroom. It’s not designed for kids who have trouble with spoken language – the teacher is constantly telling the kids what to do because most of them cannot read!
- ADHD-Inattentive Type: The boy had been going to twice-weekly speech language therapy sessions for a year, but something was still wrong. He noticed things that no one else noticed, like the noise of the ventilation system. And he still didn’t think that paying attention to speech was more important than paying attention to those other noises. An evaluation by a developmental / behavioral pediatrician revealed that he had ADHD. No wonder he didn’t learn to talk when his peers did – he had no idea he needed to pay attention to speech! But notice that the diagnosis was not possible until he was able to speak, because a child who can’t understand what you are saying, and can’t tell you what he is thinking, can look quite inattentive.
- Developmental Coordination Disorder: Some kids with language delays have trouble speaking because of the fine motor skills required to talk. If you think about it, the fact that so many of us learn to speak at all is a miracle. You have to control your breathing so the air comes through your vocal chords at just the right rate so that you can control the volume of your voice. You have to tense your vocal chords to change the pitch of what you are saying. You also need to stop your vocal chords from vibrating for voiceless sounds (e.g., the sound of the voiced v vs. the voiceless f in save vs. safe). You have to coordinate the movement of your tongue and lips to shape your mouth to form the sounds of speech. And all this must be done very quickly. If you have trouble with motor coordination, speaking is going to be tough! Not to mention playing with the other kids on the playground.
- Social Pragmatic Disorder: Kids who have trouble speaking, and who have trouble paying attention also have trouble making and keeping friends. And boys who are uncoordinated have trouble playing with other boys on the playground. So the fact that the boy was struggling to make friends made sense. But he still struggled to respond appropriately to others, even after he was able to speak and understand, to attend to others, and to run and play. Clearly there was something deeper going on.
- Asperger’s Syndrome: As he got older, his parents noticed that other kids had a much wider range of interests than their son did. He found it difficult to talk about anything other than computers or politics. This persistent pattern of fixed and restricted interests, in combination with the difficulties with social pragmatics, led to the Asperger’s diagnosis.
- Generalized Anxiety Disorder: I hate to say it, but who wouldn’t be anxious if they were dealing with all those challenges? It’s a lot. The anxiety wasn’t clear until the boy was 13 because he was one of those kids with a relatively flat affect. His parents misinterpreted that as calm. In fact, he was avoiding social interactions because he was an anxious mess. Treatment with an SSRI changed everything.
When a child is struggling, parents want a definitive diagnosis. But that is often not possible. More kids are like the boy described above. It’s impossible to diagnose every challenge until some of the more obvious challenges are addressed. Thus, the onion. Address the most obvious issues first. Once the obvious layers have been peeled away, the next layers will be revealed. The process continues for as long as you want to keep peeling.
Sometimes parents blame themselves for not noticing an issue earlier. The boy’s parents couldn’t believe they missed his anxiety for so many years. At first they felt awful about it. But it helped to think of the process as one of peeling an onion, addressing the most obvious issues before you can see the inner, less obvious layers.
It’s my hope that you will remember this metaphor as you work to help your children as they grow and reveal their inner layers. Don’t blame yourself for not seeing things earlier. We all do the best we can with the knowledge we have at the moment.
Author: Sarah Wayland
Sarah Wayland, Ph.D., is an RDI Certified Program Consultant and special needs care navigator. She helps parents of children with ADHD, autism spectrum disorders, learning disabilities, and other diagnosed and undiagnosed challenges. You can learn more about her at www.guidingexceptionalparents.com.