Why are there morphing diagnoses in children’s mental health?

My son’s first diagnosis was dysthymia.  Not ADHD, which is a common first diagnosis nor the often-thrown-around “behavior disorder.” Dysthymia sounded serious and solemn.    I had to look it up to find out what it meant, which was milder, less severe depression.  It was kind of a dud diagnosis and it didn’t open any doors for help.

It soon vanished as others were piled on.  Some I understood immediately. School phobia was a no brainer for a child who was terrified to leave the house.  Depression, too, was an obvious one for a child who talked about dying and wept with despair.  But others seemed tacked on just to explain symptoms that appeared.  Oppositional defiant disorder for those times he would scream ‘no!’ and refuse to do anything.  Obsessive compulsive disorder for his need to talk nonstop about dinosaurs, video games or other things he loved and his insistence on a rigid bedtime ritual each night.  A year after I first heard “dysthymia” he had 7 diagnoses.  He was only 8 years old.

I call this the morphing diagnosisMorphing is a special effect in motion pictures and animation that changes one image or shape into another.  My son’s diagnoses did that – they morphed from one to another while he stayed the same underneath.

What’s wrong with him? people would ask me.  “Well….” I’d start, not having a clear and catchy phrase to use.  I’ve spoken with other parents and they’ve rattled off the list of their child’s diagnoses, only possible after taking a deep breath. That wasn’t me.  I knew them all.  But saying how it started with dysthymia and we are trying out mood disorder right now seemed like a conversation stopper.

I was polite and asked the psychiatrist, hospital, evaluator and therapist to explain this pig pile of diagnostic labels.  One said, “Children can’t tell us what’s going on inside so we diagnose based on what we observe. If a child’s behavior is complicated, we use more diagnoses.”  Another told me that certain diagnoses make others more likely, so they look for those that go together.  Like fair skin and sunburn, peanut butter and jelly, bad breath and cavities? I wondered.

When he was 10, someone added ADHD in.  He’d already had a sleep disorder thrown in.  I shook my head in disbelief and threw up my hands.  By then I was feeling discouraged.  Was it true that the more diagnoses my son had, the worse off he must be?  Some of his diagnoses were overlapping or seemed repetitive (how many mood disorders could he have?). And the more diagnoses, the harder he appeared to treat. And the easier to refuse a bed to, or a service or a school program.  He and his diagnoses didn’t match up to anything.

Turns out they were circling around the big league diagnoses.  Bipolar disorder.  Psychosis.  Schizoaffective disorder.  And no one wanted to apply them to a young child.  So the diagnoses kept getting heaped on with none of them being eliminated.

When he was 12, something wonderful happened.  His psychiatrist looked at his multiple, unhelpful diagnoses and suggested a new way of sorting through them. What if we used a kind of bucket system?  My son had attention problems, sleep issues, massive anxiety, moods that rocketed around and thoughts that were bizarre and got in his way.  So instead of sorting through the diagnoses, watching one blur into another, we began looking at distinct categories.

Each visit we’d talk about how the medications helped his attention or mood.  Or didn’t.  At school, we’d look at whether his rituals had decreased or not.  At home, I’d note if his thinking was pretty off the wall or more organized.  I’d watch to see if his weird food rituals or off kilter sleep cycles had improved.  I stopped labeling any of it.  The buckets stayed fixed.  They didn’t change.

When he was sixteen, he got one of the major diagnoses.  I found that the large diagnoses are often like a big tent and many of the smaller diagnoses belong under it.  My son’s anxiety and the rituals he used to control it went under that tent.  So did his erratic sleep patterns.  So did his complete inability to pay attention for blocks of time.

He didn’t get better from any of the many diagnoses that were slapped on him with each new therapist and each new hospitalization.  He wasn’t cured and suddenly got hit with a major new diagnosis.  He’d had that illness, though not the diagnosis, all along.  No one had wanted to attach it to a child.

Some families get lucky.  Their child’s diagnosis morphs into something smaller.  Or it morphs away.  But for many of us, we get acquainted with diagnosis #1, become expert about it and think, okay, I can deal with this.  Then diagnosis #2 and #3 get slapped on.  To help our child, we learn and become knowledgeable about each diagnosis. It’s great information to have if you are talking to your insurance company or trying to qualify for certain services.  But it’s a slippery thing.  Sooner or later it’s going to morph.

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1 thought on “Why are there morphing diagnoses in children’s mental health?

  1. The parent perspective is so important when diagnosing children, yet it is often overlooked, or worse, undermined. Thanks for adding this insightful piece to the conversation. Clinicians and trainees would benefit from reading this!

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