As a psychotherapist and educator who specializes in working with kids and families dealing with AD/HD, I'm writing to try to clear up some misperceptions about AD/HD. The recent article on ADHD misdiagnosis unfortunately helps add to the confusion. Most misdiagnosis of AD/HD does not center around the alternative diagnoses noted in the article, and misdiagnosis (which does happen) often changes based upon the age of the child at diagnosis. At a wide range of ages, it is much more common for mood and anxiety disorders to be misdiagnosed as AD/HD (as these diagnoses share symptoms and often co-occur with AD/HD).
The following piece is from a longer article in press on AD/HD written by Michael Y. Simon, MFT, psychotherapist, noted speaker and author of The Approximate Parent: Discovering the Strategies That Work with Your Teenager.
1. You can call it AD/HD if you want to, but it confuses the issue.AD/HD has very little, if anything to do with a deficit of attention. Your child doesn’t have “too little” attention. He or she cannot simply “pay attention” more or “get more” attention. He’s notmissing attention. As you’ve seen, your son might devote plenty of sustained attention to preferred goal-directed activities like video games that provide immediate, ongoing “point of performance” feedback about right and wrong choices and plenty of opportunity forrisk-taking (as this is how I refer to the neurobiological pursuit of novel experience). Folks with AD/HD have difficulty shifting their attention from one task to another or regulating their attention, in general. This is not the same as having a "deficit." There is a lot of wrangling over the name of the disorder because names matter for diagnosis, treatment, reimbursement from insurance companies, determining prevalence rates of the disorder in the general and in specific (e.g., girls v. boys) populations, determining to whom and how much money goes for research and hundreds of other political, economic and sociological questions. But AD/HD shapes every single person in slightly different ways, which leads to our next point.
2. AD/HD doesn’t have true subtypes. You can keep referring to the subtypes of AD/HD—a disorder that is woefully misnamed to begin with—as predominantly hyperactive/impulse or inattentive or a combination of the two (the most common type of AD/HD), but AD/HD doesn’t have true subtypes. This typology doesn’t hold up to scientific examination, clinical experience or actual experience of the person or family dealing with AD/HD. Because of excellent, prospective longitudinal studies there are now plenty of scientific data demonstrating that a child can begin with a diagnosis in early childhood as “primarily hyperactive/impulsive,” slowly add more “inattentive-type” symptoms as they move into adolescence and then no longer meet the DSM criteria for AD/HD at all by adulthood, despite continuing to have significant impairment in academic, work and social areas of functioning.
3. AD/HD doesn’t “go away” in adulthood; it’s a lifelong disorder. The way that AD/HD looks (the “presentation of symptoms” of AD/HD”) changes from childhood to adulthood, and this is exactly what we would expect with a syndrome made up of a “confluence of neurobiological, genetic and environmental factors.”
4. AD/HD is best worked with by establishing a thorough but flexible taxonomy of the ways in which the individual is being effected—for good and for bad. We need to know the current strengths and weaknesses possessed and in possession of the individual. Early weaknesses can become later strengths and vice-versa. But there are always both in play, and better outcomes are associated with an emphasis on building strengths and a positive, but realistic assessment of strengths and struggles. The collection of this knowledge is one step in the building of the healing community for the individual and family that are dealing with AD/HD. Parents play a key role in keeping track of this listing of problems, strengths and challenges. But it's also important to note here that AD/HD is a heritable disorder and many kids with AD/HD have parents with AD/HD. This can make "tracking," record-keeping and accurate reporting of challenges and strengths difficult for parents. This leads to our next point.
5. Reducing and eliminating stigma about AD/HD and all so-called “mental health” disorders should always be approached as part of the treatment plan.
The stigma of having a “mental health” disorder is very apparent in the adolescent with AD/HD, in particular. UC Berkeley Professor and Researcher Stephen Hinshaw writes elegantly about this in The Mark of Shame: Stigma of Mental Health and an Agenda For Change. In my experience, most teens don’t want a mental health diagnosis of any kind, let alone an AD/HD diagnosis. They will hide or cease their use of medication in order that other people don’t see them taking the medication. They don’t want to feel different or be different or have “anything wrong with them.” They’ll often choose to have all manner of impairment in academics and social relationships rather than admit they have something wrong/have a diagnosis of AD/HD, which they oftentimes think isn’t “real.” Teens, especially, internalize the stigma of mental illness. Your practitioner should be fully prepared to talk about AD/HD as a neurobiological difference, and even prepared to work with the problems associated with the AD/HD, and jettison the label, if the teen won’t accept the diagnosis. But, as kids with AD/HD are often the offspring of parents with AD/HD (and related conditions, like anxiety or depression), the problem of stigma can run deep in the family. Teens don't want to be different or have something "wrong" with them and neither do parents. This can lead to significant delays in getting help and support for everyone.
6. We don’t actually know the definitive cause of AD/HD. There are likely multiple causes. Scientific studies show strong hereditary factors involved in having AD/HD. If your child has AD/HD, there is a much greater chance that you or your spouse has the disorder. And conversely, if you or your partner has AD/HD, the chances of your offspring having AD/HD are significantly increased. Is AD/HD the result of structural defects visible in imaging the brain? Maybe. But these structural and developmental differences don’t show up in every single AD/HD patient.
There is also some evidence that exposure to environmental toxins may increase the risk for developing AD/HD. If AD/HD is caused by an interaction of genes and environment, then is it your fault if you were unwittingly exposed to environmental toxins that interfered with the transcription of certain genetic proteins during your early development? How about if the axons in your dorsolateral prefrontal cortex (DPFC) don’t seem to work well with the neuronal signals involved in dopamine production? Is that your fault or indicative of something “wrong” about you? If you’re walking down the street and you get hit by a car and have a limp for the rest of your life, is that about something “wrong” with your leg? Is this a “leg” problem or a “getting whacked by a car” problem? How do you see it?
One thing we seem to be lousy at is separating out thinking about causation from thinking about morality. We generally think that if we get cancer, it’s “not our fault.” But there are doubters. Many believe you can “give yourself cancer” by your attitudes towards life or you can cure your cancer by your attitudes. This is a quintessentially American argument. If you’re not rich, it’s your fault. If you’re not happy, it’s your fault (or at least, there is something you can and should do about it). Pull yourself up by your bootstraps. Come on, get happy. Come on, try harder. I haven’t yet read one, but someone should do a study on attitudes of self-sufficiency and beliefs about whether AD/HD is a “real” disorder or not. I would bet that people who tend to believe that they’re in charge of their life and their fate would tend to believe there is no such thing as AD/HD…its all about not trying hard enough or being too negative about reaching their goals…which leads to our next point.
7. Whatever you call it or don’t call it, AD/HD is real.
It is not a disorder made up by the pharmaceutical industry or by teachers or parents who just don’t know what to do with their difficult kids. There are many thousands of studies of AD/HD. It is a well-studied disorder. Part of the difficulty, though, in getting everybody to understand that AD/HD is “real,” has to do with the variability of how the disorder presents in people over their developmental life span and how it defined, diagnosed and treated differently throughout the world. Prevalence estimates for childhood AD/HD worldwide range from 1% to 18%, largely based upon the geographic area of the study of prevalence, which influences the methods by which the disorder is defined. There is no single, uniform definition of AD/HD or diagnostic procedure or criteria for determining AD/HD. This creates problems.
8. AD/HD is a highly comorbid condition, meaning that it is not unusual for it to show up with other disorders such as
Oppositional Defiant Disorder (ODD), Conduct Disorder (CD), Anxiety Disorders, Mood Disorders (like Major Depressive Disorder), Bipolar Disorder, Sleeping Disorders, Verbal or Nonverbal Learning Disabilities or Executive Function Disorder (EFD).
Most kids who are referred for psychiatric evaluation have AD/HD with additional disorders. This is one, among many reasons, that it is difficult for mental health professionals to accurately diagnose AD/HD—its symptoms overlap with and can exacerbate, hide or otherwise complicate other symptoms and disorders. Severe AD/HD can look just like childhood bipolar disorder. In adolescence, mild generalized anxiety and a learning disability can look exactly like moderately severe AD/HD, Inattentive Type. In fact, all three may be present. An 8-year-old with a sleep disorder could be easily misdiagnosed with AD/HD, Inattentive Type.
9. Treatment of AD/HD is complicated. One size doesn’t fit all. It’s all about finding the right treatment for each individual—which seems obvious, but isn’t at all obvious in practice. I’m sad to say that in my professional and personal experiences most teachers, psychiatrists, learning specialists, licensed professional counselors, clinical social workers, neuropsychologists, marriage and family therapists, psychologists, internists, general practitioners, pediatricians, behavioral pediatricians get it wrong. This isn’t because they’re “bad” at what they do or necessarily poorly trained; it’s more often that they are not keeping up with the scientific research or are not critically evaluating the scientific research on AD/HD, and failing to evaluate not only the potential negative side effects of medication but also the negative side effects of individual or psychosocial interventions. They don’t all get it wrong or get it allwrong, and even when they do “get it wrong” it doesn’t mean they don’t or can’t help kids and adults. Some get it really right, and the ones that do are all in connection with the current literature, researchers in the field, regularly receive continuing education and are aware of the controversies in the field and are flexible in their diagnosis and treatment practices.
So, what are all of us out here in treatment land getting wrong? Well, we get wrong most of the information contained in this piece—that’s why I’m writing it. More specifically, treatment professionals get wrong the understanding of AD/HD because they don’t keep up with the research. If they even know about AD/HD and believe its “real,” they think of AD/HD as one thing, with three presentations, and they use the DSM to diagnose and determine treatment for the disorder. They don’t know or act on the knowledge, for example, that AD/HD, as described in the DSM, was developed in relation to young children and has really nothing to do with anyone over 16 years of age. In other words, the DSM has really nothing useful or scientifically accurate to say aboutadult AD/HD or AD/HD as a disorder whose presentation will fluctuate over time, based upon environmental, genetic and developmental factors.
Many of my colleagues—in my experience—don’t know about AD/HD Inattentive Type, if they know about AD/HD at all. A good portion of them think that if there are no hyperactive or impulse symptoms, there is no AD/HD. Among the more highly-trained colleagues like the neurologists or neuropsychologists, they are aware of the Inattentive “subtype” of AD/HD but still diagnose young adults (say, aged 16 and over) in accordance with the DSM criteria, relying primarily on self-reports and cognitive measures, favoring these indicators over parent reports, which have been shown to be much more accurate in determining impairment and impairment due to AD/HD.
Folks in the Learning Disabilities communities often say that these kids have EFD (Executive Function Disorder), and that EFD can overlap with AD/HD or Learning Disabilities like dyslexia and others. But since there is no EFD in the DSM, well, OMG. This is where we all want to pull our hair out. To get treatment reimbursement or recognized disabilities for an IEP or Section 504 accommodation, you have to have a “diagnosed mental disorder.” EFD isn’t going to cut it for accommodations like extra time on tests, nor is it going to allow most insurers to pay for your child’s treatment. Sometimes even AD/HD isn’t going to cut it for these purposes as insurance companies, doctors, educators and the like still struggle with whether AD/HD is “real” or not. To me, these kids have the same neurobiological disorder (that we now call AD/HD), with a slightly different presentation. They may also have a learning disability, too, but it doesn’t mean they don’t have “AD/HD.” Let’s use our common sense.
AD/HD is always going to involve issues with executive functioning, by its very definition, even if it’s a bad definition, because executive functioning is always about goal-direction, response inhibition, risk and threat-detection, regulation of attention and affect, etc. If the child or young adult has EFD, does that tell you what medication will work? No. If the child or young adult has AD/HD, does that tell you what medication or how much of that medication will work? Nope.
So, the takeaway to parents is: don’t get lost on what your practitioner-of-the-moment tells you is the diagnosis, not when it comes to AD/HD. Focus on the struggles your and your child is having and seek help for those. If the solutions your practitioner suggests become constrainedbased upon the diagnosis they give or insist upon, politely ignore their narrow view and focus on what works, safely and effectively.
The most common treatment of AD/HD (in all its presentations) is psychostimulant medication, which, among other things, modifies the reuptake process of dopamine in the brain and appears to normalize brain activation and behavior. The use of psychostimulant medication, contrary to popular lore, has been well studied and is not just part of a conspiracy among drug companies to medicate our kids. I’ll be the first person to criticize big pharma, so I’m not an apologist for the use of drugs. Does medication work? Sometimes. Does it still work if you stop the medication? We don’t know. Certain drugs, in certain doses, for certain periods of time, work for certain people. Sometimes they stop working or don’t address the problems that the person is having at 18, but didn’t have at 13 ½. Sometimes the medications don’t work for someone at 9 ½ or problems can be better addressed in other ways, but at 22, it might be time to try a psychostimulant medication. Sometimes non-stimulant-based medications can be effective. New medications are being developed right now. But there is no onetreatment for AD/HD that works all the time, and anyone who says there is, is just wrong; that claim is unsupported by research and practical experience with people and families dealing with AD/HD every single day.
Next, if you treat your child for AD/HD once during their childhood, it will likely have no measurable, positive outcome later in life. If you treat your child a lot during their childhood (medications, groups, hospitalizations, individual therapy, etc.), it will more likely have no positive outcome later in life. In fact, more treatment is associated with poorer outcomes. This doesn’t mean you shouldn’t seek treatment. It may very well reflect the fact that the more severe the disorder, the more treatment resistant it is, and that a child with a long treatment history just reflects a much more severe baseline level of the disorder.
So what should parents do, as they approach assessment and treatment? Your description and close tracking of what your child can and does or cannot or doesn’t do is probably the most important thing you can bring to the table, because this is going to form the basis of understanding and helping your child, yourself and your family—not whether your child is diagnosed with AD/HD:C, (Attention-Deficit/Hyperactivity Disorder, Combined Type) AD/HD:I, (Attention-Deficit/Hyperactivity Disorder, Predominately Inattentive Type) AD/HD:HI (Attention-Deficit/Hyperactivity Disorder, Hyperactive/Impulse Type ), SCT (“Sluggish Cognitive Tempo”). Try to make good notes about your child’s school and social history, and just what they have trouble doing and what they do well. This will be tremendously helpful.
Try to be a knowledgeable consumer of services
When you approach a practitioner, whether it’s a psychologist, MFT, neuropsychologist or behavioral pediatrician, you can ask them the following 5 questions, as a way of seeing whether you’ve found a qualified practitioner to work with you around AD/HD issues. I’m not suggesting you go in charging with this list, though. If a clinician turns out to not be too knowledgeable, it doesn’t mean he or she is lousy clinician. There are plenty of areas that are not my scope of experience or training, since I choose to focus on some things and not others. But if you are feeling pretty lost about how to evaluate whether your clinician has expertise in this area, these questions might really help orient you towards an answer.
1. What is your experience in working with children and adolescents who have AD/HD? The answer should include a long history of working with children and adolescents, especially if your son/daughter is a teen. Experience with grade-school kids does not equal experience with teens; they are different animals, in most important ways. If your practitioner doesn’t have a long history working with adolescents, they should at least be specifically and well-trained in working with teens—understanding adolescent development and the ways in which AD/HD shows up differently in adolescence than in childhood…and how it will likely change, moving into adulthood.
2. How do you diagnose AD/HD? The answer should include mention of a combination of rating scales (for the patient, parents and teachers), in-depth clinical interviews of parents and student (usually), “paper and pencil testing” for AD/HD and other learning disabilities, as well as psychological testing (and hopefully neuropsychological testing) to rule out disorders that both mimic and overlap AD/HD. You could ask your practitioner if they use the BDEFS-CA (Barkley Deficits in Executive Functioning Scale). If they don’t use it, you ask them why they don’t. The BDEFS-CA is an empirically-based tool for evaluating clinically significant dimensions of child and adolescent executive functioning. The BDEFS-CA is far more predictive of impairments in daily life activities than most traditional measures of executive functioning deficits.
3. If you find out that my child has AD/HD, what treatments do you suggest? The answer should be complicated, not cut and dry. What you should hope to hear is that the practitioner doesn’t have a pre-set treatment protocol, and says something like, “we wait to see what the testing shows, to make sure we’re matching the right treatment to the right child—and we can’t possibly know that in advance of gathering the data.” The practitioner can recommend a host of approaches, including medication, but they should be knowledgeable about the research on what types of treatment have been clinically proven to be effective for specific types diagnostic profiles. If the practitioner recommends psychostimulant medication regardless of the diagnostic profile, find another practitioner.
4. Do you read and keep up with the research on AD/HD assessment, treatment and efficacy? First of all, you could ask them to recommend 3 of the best comprehensive books or articles on the topic. Most clinicians who keep up with the research and writing in the field would mention Steve Hinshaw, Russell Barkley or Kevin Murphy. If they don’t know their work, it doesn’t mean this practitioner is awful, but it does mean they aren’t reading the work of people that are generally considered tops in their field. Many people think that Dr. Barkley’s work is the first and last word on AD/HD. I don’t. But if you don’t know his work, you probably don’t know what you need to know about AD/HD.
5. How do you feel about the description of AD/HD as a problem of having a deficit of attention? If the practitioner doesn’t understand the controversy in the field or can’t speak somewhat fluently about the issues outlined in this article, I think one has to consider looking for a more experienced practitioner.
Am I being hard on my profession and on my colleagues? I sure hope so. We’re talking about intelligently and competently helping our children and it's our professional, ethical responsibility to get continuing education about the research, diagnosis and treatment of AD/HD and other disorders that impact the lives of the families with which we work.