What Makes An Illness Real?
Is ADHD a fake disorder?
Making the right diagnosis is the most important task that doctors must perform. When a patient presents with cough, fever, and chest pain, for instance, there are a range of diseases that can be the cause, ranging from things that go away on their own, like the common cold and viral bronchitis, to life-threatening illnesses that require treatment, like lung cancer and congestive heart failure.
Making the right diagnosis in a case like this is critical to figuring out what, if any, treatment is needed. To do this, doctors use a traditional triad of methods: history, physical examination, and laboratory tests (the latter including blood tests, X-rays and other imaging studies, and biopsies). Taken together, it is usually possible to arrive at the correct diagnosis for the coughing patient. If the history is of a gradual onset of symptoms, the physical examination shows reduced breath sounds in a lobe of one lung, and a chest x-ray reveals a mass, a biopsy can confirm that the unfortunate patient has lung cancer.
But in many instances, especially when the brain is involved, two of the three methods are either not helpful or totally unavailable. When a patient complains of headache, the physician can take a careful history and determine when the headaches occur, how severe they are, how long they last, and what part of the head usually hurts. The physical examination, however, usually reveals no abnormalities—most headaches are not the result of brain tumors that cause abnormalities on a neurological examination. Similarly, even an MRI scan of the brain rarely yields the cause of the headaches. On the basis of what the patient reports the doctor must decide if she is having tension headaches, migraine headaches, or some other form of headache. Treatment may be trial and error, based on the clinician’s best guess of what is going on inside the patient’s head.
None of this means that the headache isn’t real, of course. Something is causing pain severe enough to motivate the patient to seek medical attention. Rather, the diagnostic problem rests in our current lack of technology necessary to probe what is going on in the billions of cells in our brains. Almost nothing in the blood accurately reflects what is going on in the brain, so blood tests are generally unhelpful. Even the most sophisticated brain imaging techniques, like MRI and PET scanning, cannot get to the microscopic level the way a lung biopsy can. And brain biopsy is too risky in most cases. The brain is not simply the human body’s most complex organ, it is the most complicated structure in the universe and even in the 21st century it has not yet yielded up its mysteries.
Mental Health Diagnoses Are Tough to Make
As tough as the brain’s inaccessibility to diagnostic studies makes the lives of neurologists trying to figure out what causes a person’s headaches, it is brutal on psychiatrists and psychologists charged with the job of making mental illness diagnoses. In psychiatry and psychology there are no blood tests or brain imaging techniques that are yet of any assistance in confirming a diagnosis. A mental health diagnosis is entirely based on what the patient says is going on and what other people observe the patient doing and saying.
When a patient presents to a psychiatrist complaining of feeling sad and worthless for months, not eating or sleeping, and wanting to die it is fairly easy to diagnose depression. And when a patient claims the CIA is bugging his phone and that voices are telling him to throw rocks at random car windows, and relatives say he has been accusing them of poisoning his food, a psychotic disorder like schizophrenia is fairly obvious.
But what do we do when the parent of a seven-year-old boy tells their pediatrician that the child’s second grade teacher believes he has a shorter attention span and is more impulsive and fidgety than other children his age? One possibility is to make a diagnosis of attention deficit hyperactivity disorder (ADHD). According to the CDC, 6.1 million children in 2016 had received that diagnosis at some point in their lives. In the U.S. an estimated 4.5% of children take medication for ADHD, usually either a drug called methylphenidate (commonly known by one of its brand names, Ritalin) or amphetamines such as Adderall. Studies consistently show that these medications are superior to placebo in treating ADHD.
The diagnostic manual used by most mental health clinicians, called the DSM-5, gives specific criteria for making a diagnosis of ADHD that include symptoms of inattention, hyperactivity, and impulsivity. Structured interviews to elicit ADHD symptoms and their severity are available that can be given to teachers, parents, and children. Using them makes the diagnosis more reliable.
But Is it Real?
With millions of children getting medications that are shown to work for a disorder that has specific criteria for diagnosis, it would seem that a real illness is being identified and treated. Nevertheless, there are repeated claims that ADHD is a “fake” disorder, cooked up by pharmaceutical companies that want to sell drugs to treat it. Some believe it is just a lifestyle issue that can be easily solved by “changing your child’s diet, providing them with more opportunities to exercise and ensuring they get enough sleep…”. Others say that children diagnosed with ADHD are merely bored and that the educational system is the culprit: “If the system just let them do their own thing, there is no telling what genius would be produced”. Even some mental health professionals question whether ADHD is a “real” diagnosis. “Having treated hundreds of children diagnosed with ADHD over the years,” writes one psychologist, “I have found that environmental stress on a child can produce symptoms that look like what is commonly believed to be ADHD”. The child mental health world was shaken when Harvard psychologist Jerome Kagan, lauded for pioneering work on neurodevelopment, declared ADHD to be an “invention”.
There are many diagnoses for which there is not much to go on except the patient’s history and description of symptoms and no cause is known. These include fibromyalgia, chronic fatigue syndrome, anorexia nervosa, and social anxiety disorder. In each case, there are patients who insist they have the illnesses, doctors who make the diagnoses, and treatments that are proven to work better than no treatment or placebo. Are any of them “real?”
It would be nice if we had some hard, biological data to support a diagnosis like ADHD, the kind of thing we have when we make a diagnosis of lung cancer by looking at a biopsy sample of the tumor itself under a microscope. Brain imaging studies have shown very small differences in the volume of some brain structures in children with ADHD compared to children without a diagnosis of ADHD. Some evidence links mutations in specific genes to ADHD. Traumatic brain injury also seems more common in children with ADHD.
Unfortunately, these biological findings are only hints at what might be brain abnormalities in children with ADHD. None of them rise to the level of being definitively associated with the disorder. Brain imaging and genetic tests may someday help make the diagnosis of ADHD, but we are not there yet. And that leaves open the objection that if you cannot put your finger on what is wrong by doing an X-ray or a blood test or looking in the microscope, is it really an illness.
Several more general issues are exemplified by the claims that ADHD isn’t a real condition. First, it raises the question of how we decide something is worthy of being called a disorder. Does it require a known cause? A finding that is tangible or can be seen using a test?
Second is the issue of media reporting of so-called controversies. The majority of child mental health experts accept that ADHD is a legitimate diagnostic entity. By applying what they think is “fair balance,” the media may exaggerate the prevalence of naysayers and give the impression that more controversy exists than is really the case.
Third, we worry about the influence of drug companies in exaggerating the prevalence or severity of a condition in order to sell their drugs. There are certainly abundant instances in which that has been the case.
Some Guidance Points for Deciding If a Diagnosis Is Real
Here are some things to consider when trying to make up our minds about the legitimacy of ADHD as a “real disorder.” These may help in making similar judgments about other questions about the legitimacy of a diagnosis.
- Many medical conditions are first described before the cause is known or technology can provide a definitive tissue diagnosis. Pneumonia was first described in 370 BCE, long before chest X-rays could be done or bacteria had been discovered. Disorders are usually first defined on the basis of observations and history and later more sophisticated diagnostic methods evolve. Often the early observations are what direct attention to finding an underlying cause, as was the case, for example, with the discovery that HIV is the cause of AIDS.
- ADHD is not an invention of the pharmaceutical industry. It was described long before there were medications to treat it.
- ADHD is not a benign illness. Children who have it may have superior intelligence, but still demonstrate poor academic performance, behavioral problems, and low self-esteem. Untreated ADHD can persist into adulthood and increases the risk for other adult mental health problems, including substance abuse.
- Science operates by testing hypotheses. The more often a result is replicated, the more confident scientists are in the validity of their hypotheses. One hypothesis is that medications like methylphenidate that belong to a category of drugs called psychostimulants are effective for treating ADHD. Indeed, more than 200 studies have found psychostimulants to be effective in treating ADHD. Some of these studies were conducted without drug company funding. The Multimodal Treatment of Attention Deficit Disorder (MTA) study, for example, was funded by the NIMH and showed that medication was safe and effective for treating ADHD.
- Although we don’t know what causes ADHD, scientists have learned a lot about the biology of attention in general, showing the exact brain regions and pathways that are necessary to sustain normal attention levels. As Yale neurologist Steven Novella puts it, “A disorder is a condition in which an individual lacks a function or ability that most people have to such a degree that it results in demonstrable objective harm. Attention can certainly qualify”.
- It may well be the case that some, or even many, children diagnosed with ADHD don’t really have it but are suffering from boredom, poor educational environments, emotional trauma, or a myriad of other life problems. Misdiagnosis occurs in every medical specialty. That is a reason to be more careful making the diagnosis and not to decide the disorder itself doesn’t exist.
It took centuries for scientists to figure out that pneumonia is not caused by breathing bad air or drinking alcohol but instead by viruses and bacteria. All they knew for a very long time is that people with pneumonia say they cough a lot and have chest pain. A little later fever was associated with lung infections. Fortunately, medical scientists persisted in believing that pneumonia is a real illness while they unraveled its causes. They recognized first that a set of symptoms was associated with pain and functional impairment and persevered until they found out what is going on in the lungs of people with pneumonia. Compared to the brain, by the way, the lung is a very simple organ.
In the same way, scientists recognized more than one hundred years ago that some children are excessively fidgety, have trouble maintaining attention, and are easily distractible. They figured out that specific medications made those symptoms better and that children who started out failing in school and believing they were flawed people then started getting better grades and improved self-esteem. Scientists are now at the stage of trying to use technology as it evolves to understand how a known biological function—attention—becomes impaired in such children. Because the brain is so complicated and defies easy understanding, those efforts are likely to take many more years to be successful. In the meantime, we would be doing a terrible disservice to children with the symptoms and impairment that go along with ADHD to deny it is a real disorder.