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."

13 comments:

  1. Part of the issue comes down to the exciting "secondary gain" problem. Convince the doctor your kid has ADHD and you get an SSI check.

    Now, if you are an adult with experience with the child SSI system, and you try to fake ADHD to get your own SSI/SSDI check. (Of course, as an attorney, I can tell you that ADHD is *not* a way to get $$$).

    Plus, ADHD, like bipolar disorder, is considered the "cool" diagnosis of the day. It's almost certainly overdiagnosed, so this goes into the thinking of the GPs when they wonder if the ADHD patient is drug seeking.

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  2. Hmm, thanks for pointing out the "secondary gain" problem. As a student, it wasn't very visible to me. How successful are adults trying to get an SSI check?

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  3. With adults, it generally depends on the nature of the impariment. ADHD doesn't get you SSI. Mental retardation, schizophrenia or schizoaffective disorder, on the other hand, will generally get you benefits.

    For adults, there is generally actual psychiatric hospitalization and/or suicide attempts involved.

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  4. Thanks, Emily, for this post. I hear this idea a lot about autism and ADHD - that it's a "popular" dx so that the parents can get attention, excuses, or money for their child. That just ain't happenin', people. Most of us parents get no money, no gov't money, no insurance money, nothing for the genuine extra help our children need just to function in daily life.

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  5. And as for attention, a lot of it is negative!

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  6. Sorry to leave an unrelated comment, but I couldn’t find any contact info for you. I’m wondering if you’d be interested in having a guest post on your site. Please drop me an e-mail at alliegamble81@gmail.com. Thanks!

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  7. Hi, I'm sorry to leave (another) unrelated comment, but I contacted you a while ago to ask if you would be interested in having a guest poster. My name's Allie Gamble, and I'd love to pitch some ideas to you. Please drop me an e-mail at alliegamble81@gmail.com. Thanks!

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  8. I appreciate you putting all these links together. It will take a while for me to unpack all that you've compiled. Thank you! There are definitely some things I wouldn't have found on my own.

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  9. I am currently trying to persuade the relevant professionals that I, a 27 y/o, have inattentive type ADHD. It is difficult as it is without all the anti-ADHD hype. I am especially disheartened with talk of fakers trying to get their hands on meds. I worried that this would be thought of me and it has caused me a lot of anxiety(partly because I also suffer from social anxiety).

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  10. @DrSpooglemon: sorry for the delay in replying. I am applying to graduate school and don't have as much time to check my blog as I'd like.

    That sounds tough-getting an ADHD diagnosis as an adult can be problematic, particularly if you already function pretty well. What sort of professionals have you approached, and is neuropsych testing an option for you? It's always nice to be able to point to aptitude-achievement discrepancies or low Continuous Performance Test scores instead of just "I have trouble getting organized and getting stuff done." :) I'm happy to discuss this further if you feel like venting or talking strategy. (mosaicofminds@gmail.com) :)

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  11. I am 35 and was recently diagnosed with inattentive ADHD. If you truely have it the professionals will know. You will not have to convince them of your self diagnosis.

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    1. Nalder, congratulations on your diagnosis. I hope it's helped you.

      I hope you're right about this! I'd imagine people whose executive function difficulties have obviously gone way beyond their ability to cope or compensate won't have any trouble getting a diagnosis. Do you think the same would be true for people whose struggles are more hidden, where they manage at the cost of constant exhaustion and missed opportunities? Maybe because of self-awareness and coping skills, or good social support, or high test scores? Although, if you were diagnosed so late in life, maybe that was you?

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  12. I am 35 and was recently diagnosed with inattentive ADHD. If you truely have it the professionals will know. You will not have to convince them of your self diagnosis.

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