Author Archives: maggie1961

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.

Burning Down the House: When Family Relationships Fracture and Partners Leave

Depicts feet walking out the door.

Photo courtesy of woodleywonderworks.

The messages come with depressing regularity on support forums: “Well, my marriage is over.” “How do I get my husband on board?” “I don’t think my marriage can survive this stress much longer.” And while the details differ, the heart of the conflict is almost always the same. One partner in a couple, usually a male, refuses to accept that his child (or step-child or partner’s child) has a genuine medical problem, refuses to alter his discipline techniques or participate in therapy, and frequently blames the female partner (assuming a male-female couple) for the child’s condition, perhaps claiming she coddles the child or makes excuses for him due to her misguided belief that the child has an illness. Tensions rise. The female partner has no choice but to focus on her child’s welfare. The male partner tires of the disruption and lack of attention and leaves. Now the woman partner is left to raise an emotionally difficult child in a broken household with less support, often both logistically and financially.

Sometimes the distress is caused by other family members, typically in older generations raised in a more male-dominant culture. This can be even more difficult when those family members are from a different country with conservative mores. “My mother-in-law doesn’t believe in ODD and says the problem is that I’m just not firm enough.” “My father says my child would straighten up if I just gave him a good whoopin’.” “My mother says that if I would just follow James Dobson (or other ‘Christian parenting’ advocates), my child would behave.” “In our country, we didn’t have all this ADHD. It’s just indulgent American parenting!”

Men are not always the problem partner in a male-female relationship that involves a special needs child. And older relatives aren’t always the source of unhelpful criticism that makes the task of keeping a troubled child connected with family even harder. But cultural conditioning makes men (and people of both genders who are raised in conservative religious or social climates) far more susceptible to pushing back on the idea that their child or a partner’s child has a neurobehavioral problem, even when medical or psychological professionals are telling them that this is the case. That resistance merges with the popular outcry against what some social critics see as trend toward pathologizing normal childhood behavior. A typical companion belief is that “big pharma” drives this phenomenon with an eye toward selling pills to address invented childhood behavioral disorders. With cultural validation supporting cultural conditioning, resistant family members feel assured in the correctness of their position, which also conveniently frees them both from having to question their preconceived notions and from living with a behaviorally challenging child.

So, what messages make resistant family members dig in their heels and even cut ties rather than consider that a child has a medical condition that means that requires a different approach to discipline?

    • the belief that men don’t cry, men are strong, men suck it up and get on with things Yes, it’s the same belief that keeps men from getting mental health support for themselves when they need it. It’s the same belief that makes the armed forces provide inadequate support for soldiers with PTSD. It’s the fear that their children will be weakened and left vulnerable if they are not conditioned by the rebuke and punishment that is our society’s mainstay motivational technique.
    • a deep-rooted disdain for touchy-feeliness Men in the 1970s were encouraged to “get in touch with their feelings,” “explore their feminine side,” or “discover their inner child,” but the 1990’s and beyond brought a backlash that slammed the door down on that kind of personal exploration. How many of us can even hear those phrases anymore without smirking? Worse, as self-discovery led more men to acknowledge their same-sex attraction, the willingness to open oneself to one’s own emotions became associated with being gay, the ultimate transgression against masculinity. Helping children with neurobehavioral problem means interacting with empathy, trying to understand their feelings, and trying to respond without anger. It’s a tall order for everyone, but especially if you’ve been programmed to reject emotional awareness even in and of yourself.
  • the belief that unilateral authority is the driving force in our society and we must be trained to respond to it  Some people fear that modifying their child-rearing techniques to accommodate a disability will cause them to be unable to cope in the “real world” of hierarchical relationships. Dr. Ross Greene addresses this concern in his book, The Explosive Child.
Photo of Jimmy Cagney in White Heat

We did have methods for dealing with problem kids in the old days. They worked great if you weren’t too picky about outcomes.

When I attended one of Kirk Martin’s Celebrate Calm presentations, near the end of the program, he paused to note that there were a larger number of fathers than usual in the audience than usual and thanked them for coming. I wondered whether he said that in earnest or whether this was something he always said to encourage fathers who come to hear him. Martin is unusually frank about family dynamics, a liberty he exercises as a non-academic and as someone not a part of the medical or psychology-related professions. Does fear of contact with the danger zones of cultural attitudes and gender-related norms keep childhood professionals from addressing this aspect of home environment for kids with behavioral disorders?

I don’t know the answer to that, in part because we’ve had so little formal therapy for our son, but regardless that would only represent one family’s experience.  I only know I see a lot of suffering that could be prevented with a little more education and a lot more open-mindedness.  But dealing with children with neurobehavioral problems is hard, and the escape hatch is just one finger point away.

Off Topic: Is it ODD of me to Want to Kill Mother’s Day?

Dedicated to my friend, C.

My Facebook feed on Mother’s Day looked like everyone else’s, a treacly stream of photos, encomia, and remembrances of moms past and present. Well, almost everyone else’s feed. Tucked between the sugar plums was a brief rant from one of the moms on an ODD support forum where I participate, a fist shake at heaven delivered into the cybersphere. Because Mother’s Day may not feel the same to you if your child routinely curses you, hits you, spits at you, falsely reports you to Child Protective Services, destroys your property, holds his stool and then poops his pants, urinates on inappropriate surfaces in retaliation for perceived injustices, or refuses to obey the most routine requests (not to mention that you’re often blamed for this, even by medical experts). My child isn’t old enough to do all those things . . . yet, and that’s a big “yet.” But at five years old he does most of them, so I commiserated briefly with the poster.

No, they didn’t!

Oh, yes, they did. The church I was attending, mercifully not my home church, asked all the mothers to stand up to be recognized on Mother’s Day. Had no one in ministry there received one of the copious Facebook posts describing how painful this ritual is for women who aren’t mothers and not by choice? I wondered whether I should remain seated — in solidarity with no one who was there? In a protest no one might notice or understand? I stood up.  I mean, the only reason I was at this church on this day was my children. At least C. wasn’t there.

Photo of an oleander.

The Oleander is pretty, but toxic, perhaps an apt comparison for our modern observance of Mother’s Day.

When I mentioned this acerbically to K., our former nanny’s brother, who also attends the church, his face screwed up in disapproval. “You mean,” K. said, “Don’t recognize the ones who are because of the ones who aren’t?” Like many people, he views asking churches to refrain from this particular form of honoring mothers as hypersensitivity run amok in our culture. Which would be more understandable if K. weren’t C.’s brother.

I ran across C., our former nanny, later in the week at a church dinner. I mentioned the church service to her and told her I was thinking of writing this post and my proposed title. “Please!” she replied, “Just kill it! By the end of the day, I had to just shut down Facebook and stay off till the next day.”

So what’s C.’s story? C. had a hysterectomy as a young woman to end the debilitating pain and massive bleeding of endometriosis. While it brought an end to that suffering, she had not yet become a mother, so she was destined to be without biological children. Years later, when she was employed by me, she learned in the course of treating another medical issue that had the doctors recognized an endocrine problem that likely underlay the endometriosis, they could

Illustration of endometriosis

Severe endometriosis. Scar tissue is starting to glue the organs together.

have treated her condition more effectively and avoided the hysterectomy. A nurse, she later attempted to adopt a special needs child whom she had taught to eat and walk. The child’s parents rarely visited her in the institution where C. cared for her, but they refused to relinquish their parental rights, perhaps because they were receiving government benefits for their daughter. And, on this particular Mother’s Day, C. was mourning the loss of a beloved pet, a sweet and gentle dog that she had adopted from a family with a special needs child when caring for the animal became too much for them.

So, who wants to be the one to tell C. to suck it up? The minister would probably say that if C. were in right relationship with God, she would accept His will and be at peace with it. The many people who suck up life like human Electroluxes would probably berate her for not being more emotionally resilient. I can imagine my own therapist saying, “People won’t always behave as considerately as we would hope, so it’s good to have some emotional resilience to deal with these hurts.” True. But is that a good reason for us to resist behaving with more compassion?

Not Your Great-Great-Grandmother’s Mother’s Day

Photo of Anna Jarvis

Anna Jarvis resisted the commercialization of Mother’s Day.

Let’s talk about the history of Mother’s Day in the U.S. Mother’s Day originated in the peace movement that arose after the Civil War [per Wikipedia and for all related factual details following]. It was intimately linked to the “social purity” movements of the late nineteenth and twentieth century, including prohibition and anti-prostitution efforts. These groups were dedicated to alleviating the oppression of women in the terms that it was viewed in their day, and many of the women involved in them were also suffragists. In 1910, Anna Jarvis, daughter of the woman who “created a committee to establish a ‘Mother’s Friendship Day’, the purpose of which was ‘to reunite families that had been divided during the Civil War,'” succeeded in persuading Congress to declare a national Mother’s Day. Mother’s Day, then, was a day conceived by women and for women as part of a movement to improve their lives and raise them from the near-chattel status from which they were only beginning to emerge. It was not about fetishizing maternity.

But They’re a Minority!

Assuming you think the pain of women who suffer from reproductive problems isn’t a good enough reason to be more thoughtful in how we celebrate Mother’s Day, consider that the largest group of people who disapprove of its modern observance is probably the folks who disapprove of its Hallmark Holiday status, and that’s a rainbow coalition of the annoyed. Still, let’s enumerate some of the other people so might feel discomfort at Mother’s Day traditions:

  • Women who suffer from fertility issues and their partners.
  • Women who have suffered miscarriages or still births and their partners.
  • Parents who have lost children to illness, accidents, or crime.
  • People whose life circumstances or other health issues prevented them from having children, although they might have liked to have had them. That includes older women who suffered from infertility or recurrent miscarriage before the advent of fertility medicine or before its techniques improved and became more affordable.
  • People who have problematic relationships with their mothers. If mom neglected or abused you because she’s a drug addict or mentally ill, a day extolling motherhood may not feel very heartwarming.
  • Parents who have problematic relationships with their children. See above, but in reverse.
  • People who have recently lost their mothers, especially if the death was caused by suicide, crime, or accident.
  • People whose mothers abandoned them.
  • And any time I raise this subject, others bring up personal experiences or those of acquaintances that I had never considered.

Sensitivity Versus Hypersensitivity

That’s a lot of people. It is, perhaps, most of us at some point during our lives. Now, perhaps you’re thinking, “I had x, y, or z experience from that list, and I never felt particularly sad on Mother’s Day or upset by any of the usual activities honoring mothers.” Good on you. Even though I experienced several of the items on the list above, I did not uniformly find Mother’s Day to be as depressing as some people do. But I can tell you that on infertility support forums, the members often advise others to hunker down the way the Emergency Management System details what you should be doing as a hurricane approaches. And I’m thinking you’d find the same on support forums for other issues in the list.

Photo of Sensitive Plant

Continuing the random botanical imagery, here is a Sensitive Plant. It closes in response to touch.

The equation can also be affected by the other positive things happening in one’s life. For women experiencing a cluster of deeply stressful events like unemployment, major health problems, or loss of friends or family, being left sitting down when the minister asks the moms to rise to be recognized can feel like being told you’re less worthy when it might normally not cause significant discomfort. Yes, they may be hypersensitized, but it’s not due to some deep-seated character flaw. Life is beating up on them, so why are we so intent on beating them up again?

And perhaps sensitivity levels might run lower if our culture had more validation for women who don’t have children, whether by choice or not. The point is, is it so imperative that we glorify motherhood at the expense of hurting others? Since the current holiday has drifted so far from its original mission, I’m hard pressed to think the women who cultivated it would think so. Speaking of its original mission, perhaps, as John Oliver mordantly suggests (https://www.youtube.com/watch?v=zIhKAQX5izw), we could honor Mother’s Day by doing something to improve mothers’ lives instead of handing them a bouquet of supermarket flowers and taking them to Golden Corral for dinner.

What About Father’s Day?

Happy Father's Day from Planet Beer

Father’s Day. Nope, it’s not really the same thing.

Except for the men who work in the hospitality or greeting card industries, we could probably just remove Father’s Day from the calendar, and no male would be the wiser. To the extent men suffer from the life events listed above, though, they probably endure similar reactions to the traditions of that holiday. Since men aren’t subject to the same kind of cultural pressure around becoming fathers, however, it’s likely that even men who are childless not by choice do not feel the same sense of devaluation because of it. Still, equity all around: let’s avoid insensitive rituals on Father’s Day, too.

Sense and Sensitivity

We don’t have to do away to Mother’s Day to make it more like what its founders envisioned. The chances of that happening are slim, though. Aside from the corporate Mother’s Day machine, there are a host of conservative forces who will balk at its message of peace and social justice. In the meantime, what we can do is practice a little forethought and place ourselves in the seats of the women who don’t stand on Mother’s Day.

Caveat Lector: The Slimy Companies That Exploit People Seeking Medical Information

Although the media have sounded the alarm about official-looking Web sites that offer unreliable medical information before, their potential for mischief had always been an abstraction to me.  After all, who wouldn’t pick Mayo Clinic’s or WebMD’s link out of search results first before surfing to an unknown source?  That complacency came to an abrupt end when, in the space of a few days, two different members of an ODD parents’ support forum posted links to articles on ODD from very well-produced Web sites purporting to offer expert advice on their subjects.

image of minddisorders.com banner

It looks pretty official, but this is not a legitimate medical site.

What both sites had in common is that they claimed ODD is a purely behavioral issue caused by bad parenting and environment.  Since the members of this ODD parents’ support forum had just counseled a woman who arrived coming to terms with her realization that her son had a problem and, in her own terms, in tears over repeated assertions about environmental influences and parenting technique as causes of ODD (see my first post, Haunted by the Ghost of Bettelheim, http://wp.me/p65FRS-5) in Web pages she read, this hit home, and hard.  Both sites are, in fact, compilations of information meant to draw in people searching for information.  The companies owning them then use the pages to sell advertising on them to sellers of related products.  The information on the pages isn’t necessarily false, but there’s no guarantee that the compilers had any medical or technical background to guide them in choosing sources.  And even reputable sites contain material about ODD that is biased or outdated, reflecting the lack of consensus in the professional community about how the condition should be regarded.

I posted a comment to both sites, but the original poster deleted the link to the first one in the wake of my pointing out its dubious origins.  The second site has the reassuring-sounding name, minddisorders.com.  It is not authored by a hospital, research institute, university, or medical practice, however.  A company called Advameg runs it, and here is its own description from the corporate Web site:  Advameg, Inc. is a fast-growing Illinois based company founded in 2000 by the company’s current president, Lech Mazur. With a portfolio of over 50 sites, our network sees over 20 million monthly unique visitors. Our sites are frequently referenced by media outlets, including CNBC, CNN, The New York Times, Fox News, The Atlantic and The New Yorker. By analyzing information from a variety of reputable sources, we are able to provide our users with accurate, high-quality and easily understandable information. Visitors are able to freely access our materials and find information on a wide range of topics, including science, history, health, business and much more.

Advameg initially put a warning pop-up about the site’s content on the page after I protested in the site’s comments.  It then reinstated the original page and removed my comments.  I made a new comment, which it will no doubt remove.  There’s little point to expending much more energy on it given that there are probably dozens of similar sites with their own misinformation.

So, how can a reader tell whether a site is legitimate?  Job one, look at who owns the site.  Is it

Graphic of the NIH's page banner

The NIH’s Web page has the URL name and domain you would expect.

the Mayo Clinic?  Johns Hopkins?  NIH?  Those are all well-known authorities on medicine.  Next, look at the URL in the browser’s address field.  Does it reflect the name of the entity whose name is shown as owning the page, and is the address in the .org, .edu, or .gov domain?  Most non-commercial entities like research institutes or universities will have their sites in those domains, and is it necessary to say that if a page that presents itself as being owned by a prestigious research institution has a URL like

The "About NIH" tab.

This “About NIH” tab contains detailed information.

“coolmedsitez.com”, it is probably not what it claims to be?  Next, look for an “About” link that will tell you about the owner of the page.  If that or a similar link isn’t there or doesn’t contain meaningful information, for example, detailing its mission and listing departments or other information you would expect to see about a major health institution, then the reader should be wary.

Obtaining reliable information on ODD can be frustrating and demoralizing for parents and care takers.  Predatory companies that take advantage of parents seeking information to sell products, especially untested and unproven ones like the homeopathic nostrum offered on the Advameg ODD site, can’t be stopped legally from operating as they do.  Everyone needs to use discernment in trusting which Internet sources to trust, but those of us seeking information to help our children have a special need for caution.

For your review and not for your information:

http://www.minddisorders.com/Ob-Ps/Oppositional-defiant-disorder.html#Comments_form

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).