Tag Archives: oppositional behavior

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 (http://www.blogtalkradio.com/dr-ross-greene/2010/01/26/parenting-behaviorally-challenging-kids-collaborat). 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 (http://celebratecalm.com/products/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 livesinthebalance.org

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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ODD Parents: Haunted by the Ghost of Bettelheim

photo of Bruno Bettelheim

Bruno Bettelheim, proponent of the “refrigerator mother”

In the 1960’s, the renowned psychologist, Bruno Bettelheim, popularized the theory that autism is caused by “refrigerator mothers,” women who failed to bond with their children in such a profound way as to render their offspring mentally incapacitated. Bettelheim’s reputation has collapsed in the wake of revelations that he faked his credentials and allegations of child abuse in his treatment facility. Today, most people with at least a passing acquaintance with autism would consider his theories bizarre, not unlike medieval explanations for infectious diseases. Autism is widely understood to be a disease of neurological origin, at least in the U.S.,* among the general public, and researchers strive to understand the nature of the pathology that causes it.

For parents of children with Oppositional Defiant Disorder, however, the past, as Faulkner says, is not past. Medical sites frequently place parenting issues and environment as equal or even primary factors to genetic influence or neurological problems when listing the causes of ODD. This is so, even though ODD is frequently, perhaps usually, co-morbid with other neurobehavioral disorders such as ADHD and Asperger’s Syndrome. This is so, even though siblings within the same family do not exhibit the same behaviors. These authorities conflate the apparent efficacy of behavioral therapies for treating ODD with parenting technique and environment being the cause of ODD. It’s as though a hospital published an information page for Celiac Sprue and listed “wheat” as a cause of the disease. Adding to the confusion is that there are some childhood professionals who apparently believe that “bad parenting” causes ODD, not to mention a whole school of thought that all the behavioral disorders receiving increasing attention in recent years have their roots in family environment.

photo of Romanian orphans

Warehoused Romanian children often displayed autistic behaviors.

Of course, any child’s disruptive behavior can be exacerbated by unstable conditions, inconsistent discipline, inappropriate harshness, bad diet, and lack of routine, and therein lies part of the problem. Many laypeople and some childhood professionals are skeptical of the alphabet soup of diagnoses handed out to children who don’t conform to societal expectations today, and ODD fits easily into their bias, because all children display defiant or oppositional behavior at some time. Neurotypical children, in contrast, rarely exhibit the kinds of overt self-stimulation that mark autism: hand-flapping, incessant rocking or spinning, or echolalia. Furthermore, systematic sensory deprivation and neglect can cause autism-like behaviors in children, as the horrifying conditions found in Romanian orphanages after the fall of the Ceausescu regime made public knowlege, yet parents of autistic children are not routinely suspected of severe abuse or neglect. So, why do ODD parents search for help for their kids’ behavior in a cloud of shame and suspicion, often brushed off and dismissed by medical professionals and the educational system?

One reason may be that many ODD children act out primarily around their parents, and this makes care takers and medical professionals suspicious that there’s just something not right about the home or the family. Some mistake the instability that results from having a chronically defiant child in a household for the cause of the child’s problems. The fatigue and irritability that parents of ODD children may display under such constant stress makes it easy to think the worst of them. Other ODD children act out primarily at school, making teachers and administrators wonder whether the children are spoiled and not given proper discipline at home, making them unwilling to respond to other authority figures. Regardless where the disruptive behavior is occurring, however, ODD makes people uncomfortable. The oppression of dealing with such a disturbed youngster can be painful to witness, and acquaintances, even professionals who are supposed to be helping the family, may find it more palatable to believe that these parents are responsible for their children’s behavior than they are the victims of a random neurological train wreck.

Although “bad parenting” may not cause ODD, experts such as Ross Greene, author of The Explosive Child, believe that addressing the disorder lies in fundamental change in the disciplinary paradigm that can only occur through the parents (or schools, if applicable). Greene’s Collaborative Problem Solving model is based on the observation that the unilateral authoritarianism in mainstream parenting techniques seems to trigger and fuel chronically defiant behavior in susceptible children. Other experts have offered what Greene calls non-adversarial parenting techniques working from similar premises. Note that adopting these techniques requires a fundamental re-wiring of what we think we know — and most of our culture knows — about the correct way to deal with children, though, and is very different from doubling down on mainstream parenting prescriptions, the want of which is often presumed to be the source of oppositional and defiant behavior.

Brain scan image.

Brain image showing irregularities associated with sensory processing issues, which often accompany ODD. Scientists have also identified atypical features in ODD children’s brains.

Adding to ODD’s invisibility and image problem is that there is no drug treatment specifically for it, though many children with the disorder take drugs for ADHD or psychiatric drugs for anxiety and depression. Social critics may shake their fists at the perceived over-medication of young people for ADHD, but surely the existence of a drug therapy to treat it has helped reify it in the public eye. To the extent that behavioral therapies may benefit ODD, parents are typically stuck with paying for them out-of-pocket unless their child is also autistic or has developmental disabilities (bearing in mind that Greene, mentioned above, argues that chronic oppositional behavior is a developmental disability, a view that most early intervention services and insurance companies do not share).

Parents on the ODD parent support forum I frequent sometimes comfort themselves with the thought that we are living in a moment in time, our turn in the Refrigerator Mother Barrel, so to speak. We thank heaven that we aren’t subject to the isolation and lack of information that mothers of autistic children experienced in the pre-Internet age. We pray that our children, if they are younger, will outgrow the oppositional behavior, as it does for a substantial percentage of ODD children, and that it will not turn into Conduct Disorder or bipolar disorder as it does for others when they grow older. And we pray that we have the strength and patience to help our kids turn into the most balanced and happy adults they can become, despite the internal turmoil they must overcome.

*There are still hold-outs to the belief that even autism is a developmental or neurobehavioral disorder: the BBC reported in 2012 that France was still treating autistic children with psychoanalysis (http://www.bbc.com/news/magazine-17583123).