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 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 misleading myth 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 holding a diagnosis that is 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 a stable meaning. Due to the terms inherently valueless status, GAF scores from clinician to clinician will shift and take on a whole new meaning. In essence, inaccurately and ineffectively describe a mentally ill person’s general situation. They use it to talk about their capacity to work, perform ADL’s (Activities of Daily Living), relate with others, and generally 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 applying the DSM-4 when there was once a GAF score (Global Assessment of Functioning) to evaluate how a person manages across different living domains and how they “function” in these areas. A low score gestured to a person struggling to perform essential 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. Government agencies and disability determinists used it to rate a person’s general prognosis and even predict if they would need government assistance. A low score might award a person carrying a diagnosis of disability payments, and a high score disqualifies them from services.
Where the myth began to emerge in mental health, the GAF score and its application and implementation in clinical practice were rife with inaccuracies and misuse. It was unhelpful in determining the real clinical picture of the person diagnosed. Inter-rater reliability between clinicians was low. 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.
When I talked with a therapist years ago, still using the GAF to evaluate my 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 how ineffective and inaccurate the GAF score indeed was, I would question my therapist’s score. If I 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, so many government agencies continued 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 had 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 of 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. They become symptomatic because their programs or Medicaid or disability is cut-off. 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 benefits 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.
To change the system, we need to fundamentally change the language and the very meaning 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 how the experts handle mental health treatment, and people with a vested interest in a loved one or family member.