Has Your Child Been Misdiagnosed?

For a fair and informative look at the subject, I highly recommend the book ADHD: The Great Misdiagnosis by Dr. Julian Haber.  Dr. Haber "uncovers the rampant over-use of the Attention Deficit Hyperactivity Disorder label for children with completely different problems".   A developmental/behavioral pediatrician with 30 years experience, he describes cases where the "real problems suffered by children were ignored and labeled ADHD instead".  Yet Dr. Haber doesn't dismiss the difficulty as some kind of a myth.  The book is well-balanced and practical, a "must-read" for anyone involved in this issue.  Dr. Haber's even-handed exploration of ADHD is an important contribution to the subject.

For the uninformed, the prevailing assumption about ADHD kids is explained well by Dr. Ingersoll: "If parents are 'good' parents- if they use the right child rearing methods and have a sound relationship with their child- the child will grow up to be happy, successful and well adjusted. On the other hand, if the child turns out poorly, then the parents are to blame. This notion, which has its roots in the Victorian era theories of Sigmund Freud, is widespread in Western cultures." (Ingersoll, 1988) I heartily concur with Dr. Russell Barkley, who says that "bringing up a child with ADHD may be the hardest thing you ever have to do." (Barkley, 1998)

So, if it's not poor parenting that is contributing to the extreme behavior, then what is? "How can we tell the difference between a youngster who is normally bouncy and exuberant and one who is truly hyperactive? Guidelines for diagnosing ADHD are outlined in the Diagnostic and Statistical Manual, published by the American Psychiatric Association." (Ingersoll, 1988) The classic list of symptoms can be found now in just about any book or article about ADHD.  However, research is showing us that the problem extends beyond the classic symptoms of inattentiveness, impulsivity and hyperactivity listed in the Diagnostic Manual. There are several paradigms to explain ADHD.

Neurology and a New Paradigm- Symptom Complex, Not Disease

A Symptom Complex is when a set of symptoms tends to occur and cluster together. IIt does not necessarily define a disease though.  For example, when a patient presents with high temperature, flushed skin, increased heart beat and respiration, it is called a fever.  A fever is not a disease, it is a symptom complex.  You can treat this particular symptom complex with Tylenol, but you haven't treated any underlying disease.  It could be a virus, or it could be a bacterial infection, or it could be a physical reaction to growing a tooth.  There are different causes.

Such it is with ADD/ADHD-  a symptom complex caused by underlying disorders. They may include:

Neurologists are the brain doctors. But they have not traditionally been included in the treatment of brain disorders that manifest themselves behaviorally.  This was left to the area of psychiatry. Psychiatry, in an attempt to reject Freud and become more medical, called together a task force/committee to come to a consensus on diagnostic criteria.  This criteria has been revised and is now found in the DSM-IV.  Dr. Gerald S. Golden (1992) called himself the "token neurologist" on this committee, and he was troubled by the lack of clinical data to support the diagnostic criteria.  In essence, these diagnostic definitions are clusters of symptoms that are defined as actual diseases.  Neurologist take a different approach.

The brain is bi-hemispheric.  There is lots of clinical data in the field of neurology to show this. When the bi-hemispheric function of the brain is not functioning correctly, there are obvious symptoms.

Left hemisphere: Many children exhibit the following symptoms and are given a label like Oppositional Defiant Disorder, Conduct Disorder, ADHD-Primarily Hyperactive:

These are symptoms of an affective disorder, mania, originating in the left hemisphere of the brain. In addition to these behavioral symptoms, there are many neurological "soft signs" that indicate mania.  Affective disorders are chronic and recurring.  They don't go away with behavior modification programs because they have a neuro-biological basis.  Individuals who cycle between states of mania and depression are defined by psychiatry as having "bipolar" disorder.  The term is the currently accepted one, but the affective disorder of the brain it describes is defined more accurately as "bi-hemispheric" disorder.  There are medications that are very effective in helping these individuals.

Right hemisphere: Children diagnosed with ADD-Primarily Inattentive Type may have a problem with vigilance or an affective disorder.

Vigilance is a state of wakefulness, alertness, or tonic arousal.  It's the human's maximum state of readiness.  PDV (Primary Disorder of Vigilance or Weinberg's Syndrome) is a dominant genetic trait characterized by difficulty maintaining vigilance in settings that lack stimulation.  It worsens with age, does not skip generations and individuals with it have a distinct temperament that is kind, loving and compassionate.  It is a specific genetic syndrome.  Stimulant medications can be helpful for these individuals, but they should also be allowed to move around and fidget in order to accomplish something that may be unstimulating for them- like some school work.

An affective disorder in the right hemisphere of the brain results in depression.  Again, affective disorders are chronic and recurring.  The symptoms of depression in children and adolescents are described by Dr. Harold Koplewicz, MD:

Stimulant medication will not help depression.  In fact, it can make it worse.  Irritability and inability to concentrate should not call for immediate prescription of a stimulant medication, just as Tylenol isn't instantly prescribed for every fever.  The underlying cause must be treated.  There are other medications that are very effective for depression.

So in this paradigm, ADD/ADHD is not a disease, but merely a response to an underlying disorder.  Methylphenidate (Ritalin, Concerta) is not a cure all, though in some underlying conditions it can be quite helpful.  ADD/ADHD never stands alone.  It is always accompanied by a learning disability, an affective disorder, or a primary disorder of vigilance.  Difficulty learning will often produce many of the symptoms of ADD/ADHD, but educational interventions must be applied rather than relying solely on medical intervention.  Educational problems are not ADHD!  Academic underachievement and inattentiveness is not ADHD.  But ADHD will often accompany learning problems.  The underlying causes must be teased out and dealt with.

 Neuro-biochemical Disease and the Brain

We live in an era of unprecedented ability to look at the brain's function. "Neuroimaging techniques allow us to see the fine structural details of the brain in three dimensions. . .fMRI and PET allow the detection of any and all small areas involved in a function or task, even if they are distant from each other and act only as a circuit." (Bonnet, 1997)  Without getting too technical, this is what we know so far about the structure of the ADHD brain:

The role of the neurotransmitter dopamine is involved in the workings of the ADHD brain.  Recently reported research in the Journal of Neuroscience (January 2001) has significantly increased our understanding of the delicate balance of chemical transmission which goes beyond the above mentioned structural differences.

Dopamine is the neurochemical that stimulates interest, excitement and ability to focus.  In excess, like when riding a roller coaster, it can make you feel kind of "high".  This suggests an explanation for why many people with ADHD frequently engage in thrill seeking behaviors, trying to increase that dopamine.  With their over abundance of transporters, it doesn't cause so much of a "high" as a "normal" so to speak.

The combination of abnormal brain structures and abnormal neurochemical levels indicates a real disorder, not a lack of quality parenting.  Just as other physical problems are aided by medication, so is this one.  Medicating a child with ADHD is only one step.  It cannot normalize the brain structures.  But it can assist with the delicate neurochemical balance of dopamine.    

"Within the last few years scientific studies have shown that ADHD probably is not primarily a disorder of paying attention, but one of self-regulation: how the self comes to manage itself within the larger realm of social behaviors.  Thus, even the name ADHD may now be incorrect.  To label it a disorder of attention trivializes the disorder, since it grossly understates the substantial and dramatic problems these children face in trying to meet the challenges of their daily lives. . ." (Barkley, 1998)  "When we focus on merely these typically defined symptoms [inattentiveness, impulsivity & hyperactivity] we fail to deal with the whole vista of difficult problems . . .This includes a wide range of "executive dysfunction". . . (Kutscher) What exactly is "executive function"?  It's basically the ability to "modulate behavior".  The frontal lobes do the majority of the work in regulating memory functions and control.  Dr. Martin Kutscher, MD of New York Medical College explains some important tasks that the frontal and prefrontal lobes take care of:

NACD defines ADHD as a "label", implying that it doesn't really exist. "Such children display a variety of symptoms that can be related to inefficiencies in different areas of their development. Fortunately, developmental problems can be identified, addressed, and often eliminated." (Jaquith, 1995)  Indeed, many developmental delays can be eliminated.  Attempts to procure research from this organization has led me to dead ends.  Their evidence and success rates are based on anecdotal reports, which admittedly are glowing.  Many parents have had excellent success with the program, which heavily involves some excellent sensory integration exercises.  The premise of this paradigm is not based on any empirical evidence, or at least none is allowed to be viewed by the potential consumer.

 Conclusions

I have described a few paradigms here in the order that I personally subscribe to them.  Refer to the full text of the article "Myths About ADD/ADHD" in the references below for further information regarding pop culture and media beliefs.  In conclusion, I'd like to briefly address the great medication debate.  The fear of drug addiction in our youth has incited a furor against stimulant medication.  Consider the study quoted by Dr. Julian Haber, MD: In a group of ADHD children and children without ADHD, the following drug abuse statistics were found:

In observing students with ADHD, we sometimes see them functioning very well.  Then sometimes they are a mess.  This may lead one to believe if they would only "apply themselves" or "try harder" they could function regularly.  In actuality, this is true.  BUT given the functionality of their brains, these kids must give 100% effort, just to concentrate, at all times.  We then must ask, just how long can a person concentrate at 100% consistently?

In the pipeline right now is a radio-imaging agent called Altropane.  It is already showing that it's successful in identifying adults with long-standing diagnosed ADHD. "Because of the national controversy presently surrounding the confusion and inconsistencies in the clinical diagnosis of ADHD, and the growing concern over the abuse of stimulant medications, we believe that the need for an objective, biologically-based diagnosis for ADHD has never been more urgent for our society." (Lasker, 2001)  Just like diabetes can be diagnosed with a biological agent, soon we will be able to do the same with ADHD.  Perhaps then the benefits of medication for children with ADHD will be fully realized.  Educational intervention will still continue to be absolutely necessary. Homeschooling, with it's intensive, one on one nature, will continue to be an optimal environment for educating the student with this learning difference.

Golden, Gerald S., Journal of Child Neurology, 7: 446-449, 1992

Haber, Julian S., ADHD: The Great Misdiagnosis, Taylor Trade Publishing, 2000

Ingersoll, Barbara, Your Hyperactive Child, Doubleday, 1988

Kutscher, Martin, The ADHD Iceberg: More Problems than We Expected, and ADHD Online Book, www.pediatricneurology.com/adhd.htm, New York Medical College, Valhalla, NY