I hear it all the time working in Mental Health and also as a person carrying a diagnosis. It’s a term that is both misused and overused, infantilizing, and laden with ableism. The expression I am talking about is “high-functioning”. Clinicians use it to categorize and label people that they feel are doing well and have their diagnosis managed. These are the “worried-well” to quote my friend Sabrina Johnson LMSW or the people carrying a diagnosis that also work and seemingly go without too many day-to-day crises.
Most people do not realize that there is no such thing as high-functioning. It’s a myth. Without question, this is a myth that is misleading as it is dangerous to consumers labeled by it. Sure, some folks carrying a mental health diagnosis are managing just fine in their lives. But this is an entirely different phenomenon. People carrying a diagnosis that are not symptomatic are “in remission”. There is no high functioning term thrown around in the DSM-5. Instead, the DSM uses the expression “in remission, partial remission, sustained remission etc” to describe the status of people’s active or inactive symptoms.
But somehow, somewhere along the road clinicians and people started talking about the mentally ill and began using the term high-functioning. The term however doesn’t carry ay stable meaning. From clinician to clinician, due to the terms inherently valueless status, will shift and take on a whole new meaning to inaccurately and ineffectively describe a mentally ill persons general situation. They use it to talk about their capacity to work, perform ADL’s (Activities of Daily Living), relate with others, and generally, to talk about how “well” a person is doing.
But “well” isn’t a clinical term either. So why do people continue to use the term high-functioning? I suspect it is rooted in the application of the DSM-4 when there was once a GAF score (Global Assessment of Functioning) to evaluate how a person manages across different domains of living and how they “function” in these areas. A low score gestured to a person struggling to perform basic life functions and a high score signaled that the consumer was managing their illness well. The GAF was not only used to score and diagnose, it was used by government agencies and disability determinists to rate a persons general prognosis, and even predict if they would need government assistance . A low score might award a person carrying a diagnosis disability payments and a high score, disqualify them from services.
This is where the myth began to emerge in the field of mental health. The GAF score, and its application and implementation in clinical practice was as rife with inaccuracies and misuse as it was unhelpful in determining the real clinical picture of the person diagnosed. Inter-rater reliability between clinicians was low, and the scores were often unreproducible from the same clinician using the scale multiple times evaluating the same person’s health at different times with the same health status and client reporting.
In fact, when I was talking with a therapist years ago still using the GAF to evaluate my own health in a treatment plan review, I would joke with the therapist and ask: “What is my GAF this time?” Since I was a clinician at the time, and I knew the how ineffective and inaccurate the GAF score truly was, I would question my therapist’s score. If I was scored at a 70, I would say: “You know, I think I am really at 75”, and my therapist would clumsily go over the scale with me and we would pick out a number that “seemed” more representative of how I was doing. But the reality of things was that this number was only a marker, in addition to it being a lousy diagnostic tool, it continued to be used by so many government agencies to award people much needed services like case management and housing services for consumers.
At the crux of it, the term high-functioning carries with it an assumption. The assumption that the person carrying the diagnosis is doing just fine. Clinicians, caregivers, family, friends use this term to justify in many cases the untimely termination of assistance and the elimination of not only benefits and but the enrollment patients into programs to maintain their progress. Without question, the so-called high-functioning patients are left to their own devices when they have reached a point in their recovery that they can be independent. With this said, many consumers fall back into the system and become symptomatic because their programs or Medicaid or disability is cut-off and they are left to navigate their lives without the help they have always been accustomed to due to their condition.
In many cases, consumers cycle back into the system when they reach a certain point in their recovery and are no longer eligible for services. In many cases, chronic patients with inactive symptoms become active again and perhaps even more symptomatic when they relapse. Many patients, without services are very much at risk of going into “free-fall” because they aren’t connected to treatment anymore and are supposedly recovered. In many cases, these are the patients that fall through the cracks of the system.
In order to change the system, we need to fundamentally change the language and the the very meaning of words used in clinical practice. Once the language is stabilized, and more accurately used to highlight a person’s clinical picture, we can begin to assimilate a new lexicon to talk and think about the way mental health treatment is handled by the experts, and people with a vested interest in a loved one or family member.