4/25/2011

Adults With ADHD: 1 in 4 "fakers" may really be telling the truth

I'm dismayed by a new news story going around the interwebs about adult ADHD.  A typical headline: "Adults with ADHD: 1 in 4 may be faking it."  The problem with scandalous headlines like these is they (perhaps inadvertently) convey the larger message that adult ADHD does not exist and anyone who claims to have it is just "faking" in order to improve their cognitive performance or get high.  The idea that ADHD is a disorder with no valid basis to begin with, invented by pharmaceutical companies to make money and overstretched schools to keep kids submissive, is unfortunately extremely common, and this story only adds fuel to the fire.

I would be less likely to question the dire social consequences of stories like this were the findings actually accurate.  But, in fact, a closer examination suggests some major conceptual problems with the study.

A study in Medical Neuropsychologist (which I am having difficulty locating online) examined the medical records of 268 patients and found that 22% of participants who claimed to suffer from ADHD "tried to skew test results to make their symptoms look worse."
Some of those who exaggerated their symptoms actually had ADHD, but embellished their reports to ensure they got diagnosed, said the study's lead author, Paul Marshall, a clinical neuropsychologist with Hennepin Faculty Associates, a medical group that provides services at Hennepin County Medical Center in Minneapolis.  Others didn't have the disorder at all, but were having a tough time dealing with their workloads and lives"A lot of people think they have it because they are struggling, but it's not because of ADHD," Marshall said. "Often times, it's simply depression, anxiety or lack of sleep."  Other patients may have been faking symptoms to get access to stimulant medications, Marshall said...And some just want the meds for an inexpensive high, Marshall said.
The MSNBC website also reports on an "informal poll of 100 primary care physicians" conducted by text message for their website as if it were on the same level of reliability as the Medical Neuropsychologist study. 
Responding to the text message survey, 38 percent of doctors said they suspected a patient of exaggerating or faking symptoms to get a prescription for ADHD drugs.  Some said that a red flag would go up when patients got the symptoms right, but seemed to be exaggerating their severity.
There's an obvious problem here.  On what basis can a person be said to "exaggerate" their symptoms?  Consider the fact that if a person with ADHD has other assets--particularly high intelligence, supportive surroundings, self-knowledge, and the ability to develop study strategies and workarounds--they can excel at such a high level that others do not notice the disability.  For this reason, many people who exhibited clear ADHD symptoms in childhood (and thus really do have the disorder) may not be diagnosed until adulthood, when environmental demands may finally outpace their ability to come up with new strategies.  If the questionnaire in this study just looks at how "high-functioning" an adult might be, many adults with ADHD will be considered to exaggerate the impact of their symptoms simply because of their success at managing it.

In such a case, the adult with ADHD will make sacrifices no one around them has to just to keep up with the demands on them.  A student may have to give up entirely on having a social life, having a job, or being involved in extracurricular activities, where others may just need to cut back a little.  An adult may be constrained in the jobs they can take or the distances they can commute.  Most people take for granted the ability to stop working, relax, and enjoy life every so often.  In order to keep up, a person with ADHD can almost never do this, which takes a toll on his health.  If he ever does get a chance to truly relax, he may not know what to do with it because it may have been years since he last got the chance.  This same adult may be a straight-A student or a successful businessman who comes off as perhaps a little more distracted, absent-minded, and addicted to coffee than normal, but certainly not as ADHD.  If you ask this person's teachers or coworkers for their opinion, they would rate such an adult as perfectly normal and would perhaps scoff at the idea someone so accomplished could have a developmental disorder.  But if you ask the person herself, you will uncover years of struggle and sacrifices.  In other words, rather than a suspect source of information, a patient's judgments are often the BEST and MOST RELIABLE evaluations of their struggles with attention, energy, or organization.  For who could possibly know more about a patient's behind-the-scenes struggles than the patient him/herself?

There are, of course, some caveats.  A patient knows, better than anyone else, how much she struggles.  But she may not know why she is struggling.  As a brief comment in the MSNBC article pointed out, ADHD symptoms can occur because of depression or emotional and mental stress.  Executive functioning problems also occur in many developmental disorders, including the autism spectrum, and in intellectual giftedness.  Sensory processing difficulties can mimic inattention (a person who seems not to listen to instructions and can't remember them later may have had difficulty processing the auditory information in the first place).  They can also distort attention, as in sensory overload, when everything seems louder, faster, harsher, and yet less meaningful.  Certain medical conditions, such as dehydration or thyroid problems, can look like ADHD.  Chronic lack of sleep can look like ADHD.  And of course, these can, and probably often do, coexist with classic, clearly-diagnosable ADHD.  Even an extremely perceptive patient may not know about these other factors or be able to tell which might be causing his problems.  That's where the doctor comes in.

So, where does that leave us?
* The odds are quite good that far fewer than a quarter of ADHD patients are faking or exaggerating their symptoms, when we consider that patients are generally the best judge of the severity of their own symptoms.
* However, some of these patients may have something other than ADHD and not realize it.  Some proportion of the 25% "exaggerators" probably consist of people like this.  This angle should have been emphasized more, but misdiagnosis makes for less sexy headlines than "OMG, PPL ARE PRETENDING TO HAVE SEVERE ADHD WHEN THEY REALLY DON'T."
* People who really are just out to scam the system and get drugs (of course they exist, and I've known some personally) are even more of a problem when we consider that the patient is the best source of information, because they undermine the necessary trust in patients.  As some of the doctors in the informal poll pointed out, there ARE red flags, such as requesting specific drugs on the questionnaire and when prescribed alternatives.
* Scammers will be less of a problem when we have better cognitive or neural tests for alertness, attention and executive function problems.  Objective tests like this should be used as a complement to subjective reports, and not only as grounds for rejecting them.  My guess is that when such tests exist and become widely used, a lot fewer than 1 in 4 adult ADHD patients will turn out to be "faking."