As a graduate student in rehabilitation counseling, I have recently enrolled in a graduate-level course entitled “Tests and Measurements.” Though it is a mandatory class, it is one I would have enrolled in even if it was not required because it offers an explanation of the ways and means of the mysterious and cryptic tests used to determine individuals' profiles by examining various skills. It was during class project descriptions and a discussion of the format of an evaluation summary that I recognized a disturbing fact—a diagnosis, a history of disability, and/or reported atypical behaviors that have prompted the need for evaluation are presented at the beginning of an assessment. When I asked whether this was the norm, I was advised that indeed it was. From that moment I realized that as a counselor-in-training, I was acting in a way that was contrary to all I had been taught thus far regarding person-centered plans.
I examined past evaluations of my own children, all of whom carry a diagnosis on the autism spectrum, and I realized that regardless of the psychologist or team member who was writing, all evaluation reports included the child's diagnostic label within the first paragraph. The diagnosis was there as a blurb, written in a manner similar to the way that each child's age had been written. It seemed as if the diagnosis were essentially as much a part of that child as the fact of his or her birth date. How could that not affect the subsequent description of skills? Where for one child a psychologist stated, “Verbal ability is above average,” I could not help but be impressed, because the child had high-functioning autism and had only begun speaking 2 months prior to this particular evaluation. Would I have embraced that phrase with the same relish if he were called neurotypical?
The current format of an evaluation summary (i.e., including the child's diagnosis within the first paragraph, is contrary to the goal of person-centered planning. Many researchers have examined and expounded upon the detrimental effect of “labeling” and the resulting stigma. In order to elicit change regarding the attitudes towards persons with disabilities, psychologists must lead by example. Although evaluation results are seen only by the treatment team members and others involved in the individual's care, by presenting the individual's diagnosis in the first few sentences of the evaluation, the psychologist has tainted the information that is expounded upon thereafter. Case managers and other professionals who work with large numbers of clients at one time may, due to time and budget limitations, only be able to review a client's evaluation summary prior to a meeting or interview. The serial position effect may inadvertently influence which facts about a client are remarked upon, thereby unintentionally creating a profile of a person based on his or her disability as opposed to his or her individuality.
When presenting evaluation results about the individual concerned, the placement of diagnosis might prove distracting, diverting attention from the findings discussed later in the summary. Even if the client has carried a particular diagnosis for an extended period of time, the fact that the diagnosis is so prominently placed (prior to all other results) may cause that person to perceive the diagnosis as being influential over the subsequent results. Deficits in cognition might be considered to be the result of a disability, regardless of whether the disability is actually relevant. Musalek and Scheibenbogen (2008) suggested that the therapists should factor in the influence of stigma during treatment and help clients to recognize individual strengths (not just deficiencies) in order to increase the possibility of a positive outcome for that client.
In order for a person's care plan to be genuinely person-centered, his or her diagnosis should be placed separately from the evaluation, preferably on a different page or at the end of the summary report. Two individuals with the same diagnosis may be vastly different. Professionals may inadvertently treat or select programs based on a generalized protocol for working with a particular diagnosis (e.g., high-functioning autism), yet often individuals with this diagnosis have very different needs. Sensory deficits for one individual with high-functioning autism may be restricted to the inability to feel pain, where sensory deficits for a different individual with the same diagnosis might be related to visual perception. If a treatment team is exposed to a diagnosis first, comparison of a new client with a diagnosis of high-functioning autism to past clients with the same diagnosis is inevitable.
Although a formal diagnosis provides an individual the opportunity for public assistance, clinical intervention, supportive services, and funding, the support and collaboration of services offered to that individual is ideally based upon his or her unique needs rather than the mental illness or developmental disability that might necessitate such assistance. Job training that utilizes a pictorial format might be engaged for an individual with low reading comprehension, regardless of whether that client has, for example, autism or bipolar disorder. The low reading comprehension, not the diagnosis, has made the pictorial format appropriate. With an evaluation, it is the results of the tests rather than the diagnosis that determine which services are appropriate, yet the diagnosis overshadows the report by its priority placement in the summary.
If this viewpoint seems a bit extreme, consider how knowledge of a person's ethnicity has historically distorted how that individual is perceived. For example, Sue and Okazaki (2009) found that the academic success of many Asian American students is often attributed to cultural differences when, in fact, a social emphasis on the need for education in order to prosper is the driving force behind the increased study time, resulting in high scores for Asian American students. If, then, a student profile describes an Asian American and administrators read notes pertaining to above average science and mathematics scores, misguided individuals might ascribe academic success to the student's ethnic background as a result of cultural stereotypes. Extraordinary efforts, such as increased study time and private tutoring, by the student and his or her family might be dismissed as coincidental.
Conversely, exceptional adaptive skills or cognition levels by an individual with a mental illness or developmental disability might be regarded as a triumph, something that has been achieved “in spite of” a diagnosis. Such regard indicates and perpetuates a negative conceptualization of a particular diagnosis. Wehmeyer and Garner (2003) examined how intellectual disability affected self-determination and autonomy for certain individuals and found that environment, not IQ, had the most influence with regard to what was possible for those persons (i.e., the diagnosis was not the primary predictor of what was possible for an individual). Though extraordinary achievements by an individual with mental, physical, or emotional deficits is worthy of applause, a professional risks unintentionally demeaning others with a similar diagnosis when either mentally or verbally viewing a positive outcome as having occurred despite a particular diagnosis.
The quest to change the placement of an individual's diagnosis within an evaluation summary may sound like a simple matter of semantics. Yet professionals must recognize that such a change would be consistent with and supportive of person-centered planning. By painting the picture of a client and filling in the intricate details via smaller, individual-specific components first and then revealing the person's diagnosis, psychologists provide an opportunity for the various professionals involved to create a more accurate, and less biased, image. If the diagnosis is at the start of an evaluation, how much of what is written thereafter is colored by awareness of that diagnosis? Many diagnoses conjure up preconceived notions of the individuals to whom that diagnosis pertains and that one description establishes a generalized framework into which test results would then be placed.
Should judgment of my realm of knowledge regarding the struggles of persons with disabilities be based upon on my academic “label,” my perspective might seem extremely inadequate. Although my professional career in disability services is thus far limited, one cannot overlook the exhaustive amount of personal experience that I have in this field. Not only was my father an extremely intelligent person with paranoid schizophrenia, but my three children have varying diagnoses on the autism spectrum. In addition, I myself carry a diagnosis of attention deficit disorder, am hearing impaired due to a brain tumor, and, though it has been removed, I continue to experience both physiological and emotional difficulties as a result of that tumor. In addition to my families' personal experiences, I have taught a Sunday school class for children with special needs since 2005, which has entailed developing instruments and strategies for working with individuals with one or more diagnoses. Clearly, the lack of formal credentials belies the enormous amount of unsolicited experience I have with disabilities and the issues relative to individuals, family members, and caregivers. I have been both witness and participant in the treatment circus, and though neither role has been pleasant, it has given me a perspective that countless years of education could never duplicate.
If we want society to judge us—all of us—on our work and our abilities, then a person's disabilities should be the last thing on anyone's mind, not the first. If moving one paragraph or diagnosis to another page can make such a big difference in how individuals are viewed, it really is a small change to make. In order to fully comply with person-centered planning, we must put the person first, not just in language, but in evaluation format. Psychologists must lead society by example. It is a seemingly minor change, but minor changes can bring about major events over time.
Claire McElvaney, BA (firstname.lastname@example.org), Master's Degree Candidate, University of North Carolina, Rehabilitation Counseling & Psychology, 2300 Ruddy Rd., Raleigh, NC 27616.