In the Land of the Undiagnosed

Photo of stressed woman on phone.

If you have a special needs child, you probably spend a lot of time looking like this.

Given my first post, you probably think I have a child with Oppositional Defiant Disorder. And I may. But I don’t have a formal diagnosis from any childhood professional to that effect. Is that because I’m so cocky about my Doctor of Internet Medicine credentials that I feel my son doesn’t need an evaluation from a qualified professional? Hardly. Part of our situation is simply financial. Our insurance won’t cover one, and the out-of-pocket cost for an evaluation in our area is $2000 and more. I jumped through the hoops to get a referral from our child’s regular pediatrician for their behavioral pediatrician in the belief that because their practice is in-network for my insurer, services from that doctor would be covered, too. When I spoke to the behavioral pediatrician’s assistant, though, almost the first words out of her mouth were, “You do understand that you insurance may not cover this, right?” And so it was.

The other reason for our undiagnosed state is that there are some conditions that doctors increasingly prefer not to diagnose until children are older, and ADHD, which frequently accompanies ODD, is among them. Other than the very mild speech delay that qualified us for occupational therapy services when our son was two, he has had no delays that would qualify him for services through succeeding programs, though we tried. The occupational therapist identified my son’s sensory seeking behaviors, but sensory processing issues are not considered a discrete disorder under the DSM-V. After reading a number of parents on sensory processing issue support forums who emerged from evaluations with no diagnosis and feeling that the money I could spend on one could be better spent on services, I decided that we would wait.

And my experience in online support forums tells me that we’re in good company, though that decision has had repercussions for me. Like having the director for a preschool that specializes in special needs children almost shriek at me over the phone, “You don’t have a diagnosis?! You don’t even know what’s wrong with him?” Or, when I asked a question of a child care specialist who was familiar with my child a question about limiting aggression, and he replied, “Well, the first thing you need is a diagnosis!” In their world, a diagnosis is a magic key that unlocks their understanding of what is “wrong” with a child.

Even child behavior experts disagree, however, as to the real value of diagnoses for childhood neurobehavioral conditions. One of the first sections in Temple Grandin’s book, The Way I See It, is titled “Do Not Get Hung Up on Labels.” She comments, “There is often disagreement between psychologists and medical doctors on diagnosis, and some clinicians deviate from the guidelines in the DSM-IV [note, current at the time she wrote] based on their experiences . . . Labels are useful for obtaining services, to grant a child eligibility into programs or for financial aid services. But the the label should never define the child, nor dictate what program should be used with a child.” In a recent podcast, Dr. Ross Greene, author of The Explosive Child, expresses ambivalence over diagnoses, acknowledging their usefulness for some purposes, while preferring an assessment of skills a child is lacking as the starting point for treatment ( And child behavior author Kirk Martin warns parents of difficult children against becoming too invested in the idea that a diagnosis will tell them “what’s wrong” with their child in his ADHD University ( series. That is because a diagnosis is a label applied to a collection of symptoms or behaviors, but knowing what term a medical professional will apply to a child’s problem behaviors doesn’t necessarily signify a solution, at least not in the sense that knowing which bacteria have infected a child, for example, will tell a doctor which medicine to prescribe.

Depicts two pie chefs under the banner "DSM Pie Slicing"

used by permission of

Recently a mother posted to an online forum for general parenting issues describing her frustration at a child who was displaying chronic defiance and oppositional behavior. A number of responders listed resources, tip-toeing around the ODD label, and suggested that the woman have her child evaluated, but one parent replied, “Don’t let them label your child!” I mulled whether to comment. A diagnosis can be a label, but without that label, a parent may not be able to obtain treatment for her child, at least not treatment covered by insurance or provided by childhood services. On the other hand, the child might well not receive services with an ODD label. Following the release of DSM-V, Grandin updated the section of The Way I See It that I quote above. She worries over the inclusion of Asperger’s Syndrome and PDD-NOS under the blanket diagnosis Autism Spectrum Disorder, noting, “The ODD label can be used in children of all ages. Its main symptoms are active defiance, vindictiveness, and sustained anger. These are all overlapping symptoms with ASD . . . . My concern is that chidren who need autism services will get shunted off into other labels so that less money will be required for services.”

In other words, Grandin acknowledges that children diagnosed with ODD receive fewer services. Which may sound warranted, but bear in mind that ODD children may well have behaviors associated with autism on top of their defiant behavior. My son has sensory processing issues and encopresis, two extremely common and disruptive symptoms associated with autism. In the absence of a developmental delay, however, children will be less likely to receive an ASD diagnosis, leaving their parents to cope with some of the most difficult-to-manage symptoms of autism without the professional support, plus the stigma I discuss in my first post.

This essay isn’t intended as a diatribe against diagnoses, but it is a plea for “right-sizing” them. If you are a childhood professional, please don’t dismiss parents because they don’t have a diagnosis for their child. There may be good reasons for that — which may include, by-the-way, parents’ having drained their bank account to walk out of an office empty-handed — and if you really can’t address a parent’s concern on its own content, then the question should be, “Have you had your child evaluated?” If you are a parent of a child with neurobehavioral issues, you may need a diagnosis, but don’t let the search for one delay trying to help your child’s problem behaviors, which may or may not depend on having a label for them. A diagnosis can be a long time coming. What is truly needed, however, is a major overhaul of the way childhood developmental and behavioral problems are categorized that reflects with the more sophisticated understanding of them that research is providing.


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