The Handbook of Language and Speech Disorders

The use of diagnostic terms like language disorder, childhood apraxia, dementia, learning disability, specific language impairment (now usually referred to as developmental language disorder), autism, ADHD, auditory processing disorder, and many others, as labels for individuals and their impairments is not always objective or valid and, as a result, there are many possible consequences inherent in the diagnostic process that can have an impact on the diagnosed individual. If the label or diagnostic category appears valid and is correctly attached to an individual, positive consequences may accrue. However, there may also be problems. For example, some diagnostic categories themselves are suspect and merely function as mechanisms of current societal values, power or control (e.g., Abberley, 1987; Conrad, 1992; Mehan, 1996; O’Connor & Fernandez, 2006). If the label or category is invalid or if the individual is misdiagnosed, the resulting consequences are frequently negative.

Receiving a diagnosis in the form of a disability label may start a cascade of constructive consequences if the diagnosis is an accurate one. The first constructive consequence is that the diagnosis may transform an unorganized and unclear set of complaints and symptoms into a more organized and comprehensible disorder (Balint, 1957). Once framed with a label, the disorder becomes easier to conceptualize, discuss, and act upon. It is often the case that organized categories help all involved parties achieve greater understanding and communication about complex behavioral entities that are generalized by the labels (Damico, 2019; Darley, 1975; Leyens, Yzerbyt, & Schadron, 1994). In a study of children with ADHD, for example, one of the authors (Damico & Augustine, 1995) found that parents of many children eventually diagnosed as exhibiting ADHD often had nagging feelings that something was wrong but they could not put their finger on the problem. Indeed, based upon an interviewee’s comment, the researchers in the study explained this phase of confusion as a period of “undefined malaise” (Damico & Augustine, 1995, p. 261) in which the parents did not know how to characterize their children’s problems or where to turn for assistance. Once a diagnosis was provided, however, the parents felt that they had a better understanding and could proceed in a positive direction.

In line with the first consequence, once a valid and accurate label is obtained it can also lead to opportunities and extra resources that are not available without a diagnostic label (Gillman, Heyman, & Swain, 2000; Sutcliffe & Simons, 1993). As previously stated, many governmental regulatory bodies, educational remedial guidelines, and insurance providers require a standard diagnosis before treatment is provided. Federal and state special education regulations, for example, require official diagnoses before intervention is even planned. In the ADHD study just reported (Damico & Augustine, 1995), school systems did not tend to orient to the needs of the students studied until a formal diagnosis was obtained. When the formal label was delivered to the schools, however, it acted as a catalyst. Various accommodations and services not previously offered to the child and parents now were provided. The label, therefore, had a reactive power over the schools, the parents, and even the children. This need to employ diagnostic labels to achieve such ends is not unique to ADHD. Numerous researchers have discussed this issue across many of the communicative and cognitive exceptionalities (Gibbs & Elliott, 2015; Gipps, 1999; Glaser & Silver, 1994; Klassen, Tze, Betts, & Gordon, 2011; Messick, 1984; Rogers, 2002; Rolison & Medway, 1985; Skrtic, 1991; Sleeter, 1996).

Positive impact, however, goes even further with services provided. An appropriate label does not just create reactionary influences to provide service delivery; it also enables a discerning clinician to carefully prepare a treatment plan that is tailored to the needs of the individual now accurately identified and labeled . In doing so, having the valid diagnostic label may lead to specific intervention that will overcome the identified deficits (Archer & Green, 1996; Brinton & Fujiki, 2010; Gross, 1994; Kamhi, 2014; Müller, Cannon, Kornblum, Clark, & Powers, 2016). In effect, strong assessment resulting in an accurate diagnosis is essential for good intervention to occur. To use a metaphor from Brinton and Fujiki (2010), “you must know where you are going to plan your route.”

Finally, an accurate diagnosis may have positive psychological and social consequences. For instance, individuals affected by various behavioral or medical symptoms can legitimate their problems and achieve self‐understanding once an accurate and valid diagnostic label is provided (Broom & Woodward, 1996). The individuals with impairment can address feelings of confusion, isolation, or inadequacy and construct new identities, and this, in turn, can assist in dealing more effectively with their problems (Gross, 1994; Gus, 2000; Kelly & Norwich, 2004; Riddick, 2000). Therefore, the diagnostic label can have a substantial positive impact on the lives of the individuals with disabilities (Broom & Woodward, 1996; Damico & Augustine, 1995; Gibbs & Elliott, 2015; Link, Cullen, Struening, Shrout, & Dohrenwend, 1989).

Labels, however, may also have negative effects. This is particularly true if the applied labels are not valid, or if a valid label is inappropriately or incorrectly applied. The most obvious destructive consequence occurs when an inaccurate label is applied . There are two ways that this may happen. For instance, a schoolchild may exhibit communicative or academic difficulties that are not due to actual impairment, but is misdiagnosed and labeled as disordered. In such a case, the mislabeled individual may be placed in special education or other remedial program. Often this means that the curriculum is reduced so that more time and effort may be spent on content that is deemed most important and salient, or that specific learning strategies are employed that may be necessary for impaired learners, but that limit learning by average students (Grigorenko, 2009; Van Kraayenoord, 2010). In these cases, inappropriate labeling provides poor opportunities for normal learners, and the expectations directed toward the inappropriately labeled individuals are reduced (Brantlinger, 1997; Connor & Ferri, 2005; Frattura & Capper, 2006; Rogers, 2002). Such situations often arise in contexts where students have language or learning difficulties arising out of cultural or language differences. When such students are referred for assessment, they are often mislabeled (Artiles & Ortiz, 2002; Cummins, 2000; Hamayan, Marler, Sanchez‐Lopez, & Damico, 2013; Trueba, 1988; Wilkinson & Ortiz, 1986). Their difficulties due to differences are categorized as disorders, and they are placed inappropriately in special education (Connor, 2006; Hamayan et al., 2013; Magnuson & Waldfogel, 2005; Trent, Artiles, & Englert, 1998).

The second type of misdiagnosis occurs when an individual with a difficulty due to some actual impairment is identified as having a different impairment. In these instances, the genuine impairment is not adequately addressed, remedial plans and the expectations for improvement may be inappropriate, and little positive change occurs. Labeling is particularly problematic in these cases due to the tendency to attach a stereotype to a label, and then to focus on the stereotypic behaviors in the labeled individuals regardless of the presence of other, even conflicting, symptoms (Madon, Hilbert, Kyriakatos, & Vogel, 2006).

Perhaps the most interesting, and potentially most serious, scenario for misdiagnosis occurs when the actual label applied is suspect, that is, when a diagnostic category itself may be invalid. Due to the subjective and fluid nature of labeling and application of diagnostic categories, numerous categories have been challenged in the research literature (Elliott & Grigorenko, 2014; Fairbanks, 1992; Van Kraayenoord, 2010). These challenges focus on the construct validity of the diagnostic categories themselves or indicate that the definitions used are too broad or subjective. For example, these claims have been made with regard to the recent definition of autism spectrum disorders (Bagatell, 2010; Gernsbacher et al., 2005; Waterhouse, 2013), dyslexia, auditory processing disorders (Cacace & McFarland, 1998), attention deficit hyperactivity disorder (Bussing, Schoenberg, & Rogers, 1998; Conrad & Potter, 2000; Prior & Sanson, 1986; Reid & Katsiyannis, 1995; Searight & McLaren, 1998), and specific language impairment (Cole, Schwartz, Notari, Dale, & Mills, 1995; Conti‐Ramsden, Crutchley, & Botting, 1999; Dollaghan, 2004; Peña, Spaulding, & Plante, 2006; Ukrainetz McFadden, 1996).