What Are The Limits to a Formal Diagnosis and the DSM-5?

Is Diagnosis Everything?

Diagnosis is a complicated, confusing, and emotionally heavy topic. It often leaves more questions than answers. For example, some questions to consider would be: Are PDA, adjustment disorder, and ODD constructs or diagnoses? Are neuropsychological differences something to cure or conquer? Are the majority of “juvenile delinquents” and “criminals” evil or mentally ill and undersupported? If one half of Americans cannot afford a home, let alone eggs, is that circumstance or depression and anxiety? Is the current system set up to oversimplify the human experience?

We, as helping professionals and scientists, have a big job ahead of us to do right by the children and adults we have the privilege to serve. The goal here is to provide understanding, support, and validation, without over-pathologizing, misdiagnosing, misrepresenting, without bias and confusion, and most importantly supporting those who need and deserve it most. As clinicians, we spend years in the context of academia, where we are taught what is “right”, how to “operate”, and certainly  how to “label”, with few opportunities or confidence to engage in critical thought.

For those who don’t know, clinical psychologists and neuropsychologists are largely bound by the confines of the Diagnostic and Statistical Manual of Mental Disorders, or DSM, which has been produced almost exclusively by the field of psychiatry. Now, diagnoses aren’t all bad, in fact, they often can be helpful: they can provide validation to both children and their families, they can assist in obtaining much needed services, they can support school or necessary medical or psychiatric placement, can allow parents/teacher/clinicians to present the child with appropriate expectations, and can assist with appropriate treatment and interventions. On the other hand, diagnoses are largely controlled by outside organizations, rather than the clinicians themselves, whether it be insurance companies, Medicaid, professional organizations, pharmaceutical companies, who sometimes assign labels to those who are not necessarily in distress or need of support. In terms of the DSM, for example, think of it this way; the psychiatrist creates the recipe, the psychologist cooks the food, and the clients consume the food, all while big pharma owns the majority stake in the restaurant. Historically we have had certain “trending” diagnoses in different time periods (childhood bipolar, schizophrenia, ADHD, autism, etc), sort of like a clinician and big pharma controlled flavor of the week if you will. Big pharma and the psychiatric field as a whole have often been accused of “turning everyday problems and portraying them as mental disorders.”

The number one cause of diagnostic inflation is medical insurance. This is because they require a diagnosis for every encounter, however brief or uninformative. Additionally, one study found that a significantly larger portion of children diagnosed with ADHD were of the youngest in the grade, and therefore demonstrated significantly more immature social-emotional skills as compared to the older children in the class, despite similar neurocognitive presentation.

Now for me, I have often struggled with my responsibility of being a diagnostician, as this is a large part of what neuropsychologists do. We review records and information, assess via interview, questionnaires and formal testing, and interpret all information privy to us and come to a conclusion. But what if the diagnosis that best describes the child doesn’t exist in the DSM, like sensory processing disorder, pathological demand avoidance, PANDAS, or gifted intellect? Or what if the best “diagnosis” available really doesn’t seem to fit the child’s presentation? Or what if you “technically” cannot check enough boxes because of one ambiguous criteria but you absolutely know in your moral heart that this child requires a particular intervention? What then? Not to mention, the diagnoses within any given profession never quite seem to correlate to the ones set forth by the educational system. Often times, it feels like we have it backward. We diagnose based of behavioral symptoms- instead of identifying the reason for said symptoms. Think about it. When your child wakes up with a fever and a cough, you generally take them to doctor to get a diagnosis or understand WHY they have a fever, right? The doctor will typically run tests to see what underlying virus/bacteria/systemic issue etc. is causing the fever. Sure, you can treat the symptom of fever itself; however, this will not ultimately resolve the illness or prevent the fever from returning. Now of course, psychiatric disorders are slightly different- but I think we often neglect the cause or etiology of these “disorders” and tend to focus on the particular cluster of symptoms someone experiences, which may vary based upon how someone’s unique mind and body reacts to stress or trauma.

Presently, the DSM is a categorical-based system. That is, essentially, you either have it or you don’t. Unfortunately, there are many downsides to this method of classification. For one, there are too many possible ways to arrive at the same diagnosis. Think back to math class when we learned about permutations and all the fun ways you can make a deli sandwich. This is not often a good thing, because we don’t have a shared cause of the “illness”, which means that giving every person with “anxiety” or “autism” the same treatment, could backfire. Second, there is often significant variability in presentation within the same diagnosis. Think about people you know who may carry an ADHD, autism, or depression diagnosis and how differently they may present in terms of their own strengths and struggles. Third, many people who have a “subclinical” presentation, that is they almost meet criteria but not quite and fall just outside the box so to speak, may not be eligible for treatment, despite being on the cusp of a severe difficulty. In reality, there are often only very slight differences between those considered “normal” or “typical” and those considered “atypical” or “ill.” Fourth, there is significant overlap in symptoms for many disorders, thus resulting in a high rate of misdiagnosis and/or lack of diagnosis as well as lack of cultural considerations. Fifth, there is poor validity and reliability amongst clinicians when diagnosing, since many of the “definitions” of disorders are subjective and underlying constructs are poorly defined. Several diagnoses have the same subjective label they intend to define as one of the criteria (e.g., one of the symptoms required for a diagnosis of depression is “feeling depressed”). In fact, one study found as low as 30% reliability in agreement of diagnosis between psychiatrists. As Anna Mehler Papery put it so eloquently in her book “Hello, I Want to Die, Please Fix Me”, “The DSM’s authors boil down diagnosis of mental illness to something resembling an online quiz of: Which Disney Princess Mental Disorder Are You?” Sixth, because of the over, under, and misdiagnosis, there is lack of clarity and specificity in research pertaining to treatment for such diagnoses, often resulting in poor or tarnished data affecting outcomes. And seventh, there is lack of consideration for preventive identification and developmental stages in which children’s presentation is rapidly changing. Therefore, intervention often comes too late or is not comprehensive or efficient, not to mention many of these diagnoses were established by a room of largely white, well-off, males. Mind you, there are plenty of diagnoses that have been coined with little to no research, solely for the intent of marketing a new “treatment” or “cure.” So, as you can see, we could certainly benefit from a change in this department.

It just so happens that over the past decade or so, there have been two main groups that have been working on implementing dimensional diagnostic systems. One is called the RDoC, which gets at the neurobiological bases of symptoms, and one is the HiTOP, which aims to provide a data-based classification of common symptoms to inform clinical decisions. In fact, these two groups have actually been working together in an attempt to create a “unified system.” So the idea behind a more dimensional system is essentially that many traits are on a spectrum and are dynamic, or fluid, in nature. That is, they vary significantly in severity, in how they present behaviorally, and how much of a given trait (for example, distress, inattention, fear) is present at a given moment.

Additionally, this way of looking at disorder will account for cases in which individuals may have very similar causes, but different outcomes or presentations depending on their individual characteristics. You may be familiar with the nature vs. nurture debate of how well all come to be. For example, if you have a child who had experienced neglect and trauma in their early childhood, depending on different genetic vulnerabilities and neuroanatomical structure (that is, the way their brain is formed or structured), in combination with environmental experiences, that same child may later present with symptoms which in today’s classification system would be either depression, borderline personality disorder, anxiety, or PTSD, all of which has different specific treatments, both from a psychotherapy and a medication standpoint, despite having similar causes and backgrounds. Similarly, for those diagnoses that have significant overlap (think autism and ADHD, depression and substance abuse, depression and anxiety) in both underlying causes and presentation, a more specific individual profile and tailored and effective treatment plan can be established. Additionally, many “psychiatric” disorders have co-occurring cognitive dysfunction or differences. Dimensional models have also been shown to better capture the effects of today’s most common environmental stresses in children (e.g., bullying, abuse, social media, discrimination).

With a dimensional approach we can think of these individual traits as constantly interacting with each other to form a more specific profile. For example, instead of a labeling a child as: someone who plays basketball, is male, is 6’2, plays lacrosse, has good grades, wants to be president when he grows, up, and is brawny, we could look at all the individual facts and conclude holistically that they are a strong, motivated, and athletic young man, which is easier to visualize and process. And if we were to translate this into psychology we could consider a child who has high levels of inattention, impulsivity, and stimulus-seeking,  and low levels of withdrawal, reward processing, and pain and thus form a more unified understanding and treatment plan, if necessary.

Now, to take this a step further, we may be able to identify which particular trait interactions and profiles are most common within individuals, who go on to engage in certain behaviors, for example suicide, school shootings, or OD from opioid addition, maybe, hopefully, we could have an upper hand in identification and prevention of such tragedies. Additionally, these dimensional profiles may be more equipped to assist in yes/no decision-making for things like whether or not a child should trial medication or be placed in an inpatient hospital setting, or require a certain type of psychotherapeutic treatment based on symptoms, not a diagnosis or label. In fact, in 2016, the FDA actually recommended that pharmaceutical companies consider the most prominent symptoms, as opposed to diagnoses, in terms of research and drug development (for example treating insomnia, rather than depression as a whole). This could be groundbreaking because, as of now, there are many drugs that are on-label or intended to treat multiple different diagnoses, which both affects the research and outcome analyses of these drugs, as well as potentially resulting in a mismatch between specific treatment/drug and presenting difficulties. For example,  SSRIs (these would be your Prozac, Lexapro, Zoloft, etc.), also known as the drug class of antidepressants, which is a confusing name in and of itself as they treat many disorders aside from depression, are often given to patients across the OCD spectrum disorders; however, research has not supported efficacy for hoarding, tics, and other less common forms of OCD or with complex comorbidities (that is, when more than one diagnosis is given). In fact, sometimes a secondary diagnosis arises, because of side effects intended to treat a primary diagnosis.

The potential danger here is that many times, through no fault of their own, parents or individuals end up bypassing a more involved comprehensive diagnostic evaluation (perhaps because of cost, waiting lists, insurance or geographical factors, etc.), for a briefer appointment, where they spend much less time with the doctor and with less historical or information from other providers. It has been argued that insurers undervalue behavioral health care by reimbursing providers so little that it isn't worth their time to accept insurance.

Further, from a neuropsychological perspective, the same diagnosis can result in significant differences in skill sets. For example, for children for whom the best diagnosis would be ADHD, that could mean many things: extremely slow processing speed OR extremely high processing speed, better selective attention than sustained OR vice versa, significant restlessness OR daydreaming). You probably get the point. Moreover, if you think of a disorder like autism, which is largely diagnosed via behavioral observation of symptoms and the presence of developmental delays there can be many different “causes” including underlying genetic conditions and or other causes in differences in wiring so to speak.

So, what have we learned here? Well, there are a number of flaws in the execution of the current way in which we diagnose, resulting in poor agreement in diagnostic labels and not much attention often paid to the causes of such “disorders.” When you schedule an appointment to get a diagnosis for yourself or a child, ask how long the appointment will be, what testing measures or questionnaires will be used, why a certain medication is being prescribed and if you may be provided with research related to its effectiveness, and how much control will you have over your medical records? Also, don’t be afraid to advocate for yourself or your child- do you feel the diagnosis is appropriate? Did you feel the clinician took a detailed and comprehensive history? Do you believe you or your child’s struggles warrant a clinical diagnosis? There are some hopeful solutions for positive and effective change, but in the meantime, it is crucial for parents and individuals to be aware of the factors and processes that may go into their child’s or their own diagnosis. Do your research. Ask questions. Don’t be afraid to get a second opinion. And most importantly: Don’t give up.