Tag Archives: ODD

That Thing You Shared on Facebook

A lot of water has passed under the bridge since my last blog post.  Life has been, well, just life when you’re starting twins, including one with ADHD/ODD, in Kindergarten.  And, as that last sentence suggests, we have a diagnosis now.  Wanting to be able to proceed on firmer ground with his school and feeling less concerned that a doctor might decline to diagnose due to his age, we finally opted to have my son formally evaluated.  The child psychiatrist concluded that he has ADHD, and while I was relieved that my son wouldn’t have the stigma of an ODD diagnosis, when I mentioned that to the doctor, he said that my son fully qualified for that diagnosis, but he believes that ODD should only be used as a placeholder diagnosis, that there is always an underlying cause for it.  (He is far from alone, and his belief has interesting implications both for the way the DSM treats sensory processing issues and statistics we read about the co-morbidity of ODD, but I’ll save those thoughts for another post).

Photo of John Oliver speaking with text of quote: One in four Americans is skeptical about climater change . . . who gives a shit? That doesn't matter. You don't need people's opinions on a fact. You might as well have a poll asking which number is bigger, 5 or 15? Or do owls exist? Or are there hats. (Source attn:)

If people with no science background feel entitled to air their opinions on climate change, what chance do people with ADHD and their families stand?

So, we’re lucky to have that ADHD diagnosis.  It’s more accessible to the general public, and people at least think they understand what we mean when we say it.  Which leaves a lot of space to wander in during conversations, because what people think they understand about ADHD can be more daunting than admitted ignorance.

There are few medical disorders for which the public feels as free to disbelieve, ignore, or dismiss the evidence of researchers and doctors than ADHD.  And one reason for that is the steady stream of skeptical media pieces that circulate on social media.  They are typically authored by professionals who are not MDs.  Sometimes the writers are not childhood professionals of any kind; rather, they are writing in the stance of investigative journalists, whether or not they have any credentials to support that.  And the gist of almost all of them is that the mainstream medical view of ADHD is, at best, fatally misguided and, at worst, a money-making conspiracy.

Perhaps Facebook Public Enemy Number One for parents of ADHD children is an article published several years ago by Psychology Today titled “Why French Kids Don’t Have ADHD.”  I’m not going to post the URL, because it has metastasized to every corner of the Internet, and you can jolly well find it yourself.  In it, the author argues that the French don’t have to resort to medication in their country, because the parents there are way cooler and firmer than U.S. parents, plus they keep food dyes and preservatives out of their diets!  Never mind that the only proven dietary factor in childhood psychiatric illnesses is a connection between a few specific food dyes and behavioral problems in a small number of susceptible children.  Never mind that Psychology Today printed not one, but two, rebuttals to the article.  Most insidiously, however, the article plays on U.S. adulation of French culture (The women don’t get fat!  They bring up bébé with aplomb while we shvitz like, uh, the fat porkers we are over every infant snit!), while exploiting ignorance over the real state of French child psychiatry.

And that’s worth knowing, because according to a child psychiatrist interviewed in one of the Psychology Today rebuttal pieces, “[i]n France it is difficult for parents to get an evaluation and treatment for their ADHD child.  It takes 8 months for a child to get an appointment with a specialist, and it can take another 8 months before a child is prescribed medication (Getin, 2011).” (https://www.psychologytoday.com/blog/here-there-and-everywhere/201209/french-kids-do-have-adhd-interview)  Furthermore, as noted in my previous post on the trials of parents of ODD kids, as of 2012, the French were still treating autism with psychoanalysis (http://www.bbc.com/news/magazine-17583123).  For all that science does not understand about autism, given what it does understand, that’s only a few shades better than leeches and cupping, yet without that information, many of us lap up this image of Gallic savoir-faire banishing a neurobehavioral disorder like avalanche survivors offered cognac after being pulled from a snow drift.

Photo of the front of a Kellogg's Froot Loops box. Mascot "Toucan Sam" swings from a vine over a bowl of the multicolored cereal.

The food industry is removing artificial colors from kids’ products despite the lack of hard evidence that many children are negatively affected.

But there’s plenty more misleading information on ADHD, most of it emanating from the faux medical sites I discussed in a previous post (https://childstorm.wordpress.com/2015/05/14/caveat-lector-the-slimy-companies-that-exploit-people-seeking-medical-information/).  Another frequent offender is alternative and naturopathic medicine sites like mercola.com.  The theme of many of these articles is that Big Pharma drives ADHD diagnoses by pushing its drugs to doctors, who are motivated to prescribe, because insurance frequently doesn’t cover behavioral therapies.  It’s true, insurance companies are much more likely to cover pills than behavioral therapies, but few parents have the luxury of leaving any therapeutic stone unturned.  Pills rarely “fix” ADHD on their own.  Still, behavioral therapies are time-consuming, cause lost time from work for parents, and can be difficult to implement in the course of routine family living, plus families may not realistically be able to approach behavioral therapy until medication alleviates disruptive symptoms.  Having had three unsuccessful attempts at medicating my son, while genetic testing is suggesting that large swaths of the formulary may be unsuitable for him, all I can say is, “Big Pharma, send more pills!”

Another subject that gets a lot of Facebook sharing is the impact of requiring younger and younger children to sit still for longer periods of time in the name of early literacy.  That is a legitimate issue for all children, and it may be that this pushes the point at which kids with borderline attention issues or sensory needs become a problem.  But let’s be clear:  the culture isn’t causing ADHD, and that’s a nuance that some the articles do not convey effectively.

Photo of woman shrugging shoulders

Did I just reinforce your mom’s nineteenth century views on childhood behavioral problems? Oh, sorrreeee!

So, what harm does it do to pass these bits of questionable and false information around social media?  It’s harmful because most of the people reading them don’t look into the credentials of the people writing them, don’t question the bias of the source of the material, and if the material reinforces their pre-existing biases, it will likely lend authority to their point of view.  And this may lead those people to

  • criticize parents who medicate their children
  • criticize parents who allow their ADHD kids to have foods reputed, despite lack of hard evidence, to aggravate behavioral problems
  • criticize parents who seem insufficiently “firm,” because they believe they are seeing lax parents when they may be seeing exhausted ones
  • criticize parents for even believing the doctors who told them their child has ADHD, because the reader “knows” that ADHD is a cultural and medical hoax

And this stuff tears families apart.  Some parents on an ODD parent support forum where I participate have had to cut off contact with grandparents because of it.  Schools are booby-trapped with staff who have bought into these ideas, who will undermine IEPs and 504 plans, and even shame and mistreat ADHD students.  Random strangers will give grief to already-struggling parents in public places.  Churches, which should be a source of kindness and support, become places of bitterness and judgment.

So, before you click that “Share” button, think about what you’re reading and who will read it if you share it.  Occasionally, when I probe to find out what motivated friends to post something that seems uncharacteristically wrong-headed (and not just about childhood psychiatric problems) to a social media site, they will tell me that they didn’t have any real investment in the ideas it contained, they just found it interesting.  I’ll take that at face value, but remember that what you find intriguing, someone else may find a useful buttress for their structure of ill-informed prejudice, and unless you have an ADHD child (or have ADHD yourself), you won’t be suffering the consequences.

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.

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).