Saving PG Normal: Differential Diagnosis and our Extraordinary and Uncommon Folk

"For every complex problem, there is an answer that is clear,

simple, and wrong."

H.L. Mencken

We know that our kids (and adults) are extra-ordinary: beyond what is regular or established. They are also uncommon; they are not seen or experienced often.

Their extraordinary and outlier status puts them at risk for missed diagnosis or misdiagnosis, partly due to the mental health framework itself, and partly due to the nature of our profoundly people.

Our mental health diagnostic system, which relies heavily, if not exclusively, on the "Diagnostic Manual for Mental Disorders", produced by the American Psychological Association, has its uses, yet there are many difficulties with it now, and over time.

"Human difference was never meant to be reducible to an exhaustive list of diagnoses drawn from a psychiatric manual. It takes all types to make a successful tribe, and a full palette of emotions to make a full life.

We shouldn't medicalize difference and attempt to treat it away by taking the modern-day equivalent of Huxley’s soma pills. The cruelest paradox of psychiatric treatment is that those who need it most often don’t get it, while those who do get it often don’t need it. How do we save normal, preserve diversity, and achieve a more rational allocation of scarce resources?" (Allen Frances, psychiatrist, Chair of the fourth revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV)

Frances became critical of the current version, DSM-5, stating that  the expanding boundary of psychiatry is causing "diagnostic inflation", swallowing up normality. In his words, "we over-treat the 'worried well' which takes the focus from the core mission of treating the more severely ill."

He goes on to say that:

"We all have a strong need to identify patterns . . .to distinguish lion from lamb, food from poison and friend from foe . . . This is inbuilt. Abnormal behavior has always threatened our survival as we are dependent on tribal harmony, on group cohesion. We need a name and an explanation as a way of gaining control over behaviors and ideas that threaten the individual and the social group (whether these occur on the savannah or at the office)."

Labeling was and remains an important way of reducing uncertainty and providing a sense of (often false) mastery. Finding patterns helps us sort untidy experience into manageable units. In this view, an inexact or incorrect name or explanation for mental disorder beats having none at all. 

But here's the rub: the inner world of the profoundly gifted child is multifaceted and dynamic, not easily parsed according to standard criteria relying heavily on behavioral indices, those observable signs easily masked by clever gifted children and adults. Additionally, these very behavioral indices themselves are based on average behaviors which are invalid in describing the (uncommon) behavior of our statistical outliers.

Parsing the multiple variables that contribute to our mental health status - including psychological, cultural, environmental and historical influences - is an exquisitely difficult task when we are dealing with a population as complex and as variable as the exceptionally and profoundly gifted. We must proceed cautiously, humbly, armed with the fullest understanding of what PG "normal" looks.

Most importantly we must be willing to be surprised.

No two PG kids are the same, and the multiple layers of their experiencing, and the variance in how they express themselves, is as complex a psychological algorithm as can be imagined. We cannot be seduced by seemingly “obvious” indicators of difference. Our children are multi-layered and subtle in how they experience the world.

From a Mom in the USA:

"At least 5 out of 7 days of the week, some regular Joe has to interject to tell me my 4-year-old must be on the spectrum. Simply because she is "so good at math". I assure them that she has been evaluated and that is not the case... They tell me to get a second opinion. All without knowing anything about her besides the fact that she is exquisitely numbers capable."

To make the task even more difficult, we know that our children may mask how they are feeling, as they fear sharing things they feel could harm the person they are sharing it with. They fear "pathology contagion". There is evidence in the literature to support the idea that happiness and depression can be highly contagious across social ties. In families with EPG folk there are deep connections with interpenetrating lines of emotional and social experience at play. The at-risk child or adult may be acutely aware of those ties and protective of their loved ones as a result.

Sharing their innermost world and difficulties is further complicated by felt incapacity. EPG children and adults report feeling frighteningly inarticulate when they are experiencing mental health difficulties. With their thoughts and feelings internally askew they feel alarmingly disabled, incapable of expressing the felt experience.

Neither biological reductionism nor rationalist doubt should take the upper hand in our thinking about mental health. Rather, a reasoned, informed, compassionate, multi-modal diagnostic must be employed.

There are no easy shortcuts in this process. It takes time to get to know a child. Time. Patience. A clear lens on one’s eyes. And, importantly, belief in the healing power of an informed therapeutic relationship. Belief in the resilience of the child requires deep knowledge of both normative development and also what mental health difficulties look like.

We need to know WHO the child is, in a variety of settings, and in their innermost worlds. We need to know about the nature of their environments and we need to invite them to the table, in a meaningful way, to do the assessment. We cannot achieve a valid diagnosis without their cooperation and without a thorough understanding of their experiences in the world.

In the absence of an unclouded understanding of normative behaviours for the profoundly gifted, these children can be misdiagnosed, when we are not clear-eyed about the etiology of their behaviours, and we can miss the signs of a PG child who is truly at-risk.

Of the estimated three million intellectually gifted students served in the United States, for example, there are probably no more than a few thousand who can be classified as exceptionally or profoundly gifted. The average educator will never personally encounter such a student. The average mental health clinician has no training in the special psychology of the gifted, let alone that of the Profoundly Gifted.

From a Mom in Greece we have unsettling evidence of the effect of system-wide misapprehension and miscuing in the life of her profoundly gifted and highly sensitive son:

"I think parental perception alters the whole course of a PG child’s trajectory. What I have found so sad is that due to lack of understanding of giftedness when ‘health’ professionals attempted to guess a diagnosis for my son he would gladly attach to the suggested label or even self diagnose himself (he knows the DSM-V by heart!) to end his own struggle with rejection and alienation. He was happier to consider himself ‘sick’ than an outcast. And it has been so hard to convince him that no, he has no “illness” in his brain, because he is also puzzled by his own intensity which stands out from the crowd and has caused him so much heartache."

In the end, profoundly gifted persons with mental health difficulties can be highly at risk. We need to get this right.

Appropriate clinical response requires knowledge of symptoms and causes across a wide spectrum of behaviours.

Clinicians need to become conversant with the effect of a complex cognitive and affective self-system on mood disorders, as but one example, and the degree to which the gifted individual reveals the essence and the dynamic of the felt experience.

In the end, we must continue to build a body of work large enough and multifaceted enough to adequately represent the individuals within the PG community. We must continue to share this work - think Seng, think NAGC, think Davidson and others. And we must work together to protect our children's inalienable right for authentic, uncommon and "normal" experience and development.

P. Susan Jackson, researcher, and author.

Daimon Institute

"Excuse Me, Where Do I Park my Whale: The Extraordinary Journey of the Exceptionally and Profoundly Gifted".

WATCH FOR OUR NAGC 2020 PRESENTATION ON THIS TOPIC COMING SOON:

Dr. Jillian Gates and P. Susan Jackson of the Daimon Institute will present:

"Merging Assessment and Psychotherapy to Meet the Mental Health Needs of the Profoundly Gifted"

If we want to solve a problem that we have never solved before, we must leave the door to the unknown ajar." Richard Feynman.

Psychoeducational assessment analyzes children's educational performance. Assessing Profoundly Gifted considers extraordinary humans in context, to understand extraordinary souls. This field-tested model presented merges assessment and psychotherapeutic practice, yielding extraordinary mental-health benefits using authentic, dynamic assessment