“What does the child have?” – 6 questions about the meaning of a child’s diagnosis

This blog message was contributed by Miguel Santos (Porto Polytechnic School of Education)

“We still don’t know what the child has…”, told me a teacher about the difficulties she was experiencing with a child who demonstrated behavioural problems. That sentence kept me wondering. Gathering information about what the child “has”, i.e., trying to know “his/her” diagnosis, underlies a genuine concern. But are those difficulties due primarily to something he/she “has”? To what extent knowing the diagnosis is essential to plan interventions at home, daycare or kindergarten?

What is a “Diagnosis”?

The word diagnosis refers to a process and to a product. As a process, it describes the systematic procedures through which a clinician collects, selects and organizes a set of signs and symptoms, producing an interpretation – an “organized condition”. As a product, it refers to the label given to that “organized condition”, according to current conventions [1].

Diagnosis can be categorical when there is a discontinuity between the individuals with such diagnosis and the general population. For example, Trisomy 21 is a categorical diagnosis, because there is a clear discontinuity, resulting from the existence of three chromosomes in pair 21. If there is no discontinuity, we talk about dimensional diagnosis. Autism Spectrum Disorder (ASD) is a dimensional diagnosis because its symptoms can be found, despite in different levels, in the general population [2].

Diagnosis is something the child “has”?!

As I mentioned above, the diagnosis depends on the conventions established in a given moment. This is very clear in the Attention Deficit Hyperactivity Disorder (ADHD). You probably do not know many older people diagnosed with ADHD. Though there were always people with the type of functioning associated with this condition, only a few decades ago it was established as a clinically significant way of functioning and got that label. Moreover, the ADHD criteria have changed over time, with consequences in the number and characteristics of the diagnosed cases. The same happens in many other diagnostic categories. Therefore, a diagnosis does not describe what the child “has” or “is”, but in what category the specialists include the child according to current conventions.

Do clinicians easily agree on a diagnosis?

Obtaining a diagnosis is not an easy process. Frequently, parents have to persuade clinicians of the existence of disturbances in the development of the child. Many professionals devalue complaints, suggesting parents to wait for their children to grow up and to overcome problems. For example, in a study about the diagnosis of ASD, researchers noticed that parents wait, in average, 5 years for a diagnosis, visiting 4 or 5 specialists (ranging from 1 to 29 clinicians). Therefore, child functioning is often interpreted diversely by different clinicians.

Do children with the same diagnosis present the same behaviour?

Research shows that people with the same diagnosis can have quite different patterns and levels of functioning [4, 5]. For example, in neurodevelopmental disorders, researchers found that the diagnostic information does not provide an adequate representation of the child functioning. Frequently, there are problems in several areas of development or even other diagnosed conditions [5]. Therefore, knowing the diagnosis tells us very little about the child functioning.

What is the purpose of a diagnosis?

Two main uses of the diagnosis are generally put forward: to increase the access to services and financial support, and to facilitate communication among professionals [6]. Nevertheless, in many contexts (as in Portugal), a diagnosis is not necessary or sufficient to obtain educational supports, while an assessment of the functioning of the child in his or her life contexts is always required [7, 8]. This assessment is indeed necessary for any educational planning [5, 9]. Besides, in most situations, teaching methods are not determined by the diagnosis nor are they different from those used with other children [10].

Can the diagnosis bring any risks or negative consequences?

In some situations, knowing the diagnosis can apparently protect the child, for example, adjusting the interpretation people make of the child’s behaviour, or helping the child to understand himself [11, 12]. Nevertheless, the diagnosis highlights the aspects in which the child is most different from the others, underlying the child’s weaknesses [6]. Research shows that the existence of a diagnosis influences teacher expectations, increasing the risk of stigmatization, discrimination and exclusion [13, 14]. These effects remain throughout the child’s school life.

For all these reasons, we can conclude that knowing the child’s diagnosis can be relevant, but it requires a careful interpretation. It is imperative to stop looking at “not knowing what the child has” as a problem and to look for other types of information to plan the action.

In this message I leave some questions unanswered. What verb should a teacher use to complete the question “What does the child ­­­____”?

Do you work with children with “diagnosis”? How do you use that information? Share your comments with us!

References:

1. Brown, P. (1995). Naming and framing: the social construction of diagnosis and illness. Journal of Health and Social Behavior, 35(Extra Issue), 34-52. doi: 10.2307/2626956
2. Hyman, S. E. (2010). The diagnosis of mental disorders: the problem of reification. Annual review of clinical psychology, 6, 155-179. doi: 10.1146/annurev.clinpsy.3.022806.091532
3. Goin-Kochel, R.P., Mackintosh, V.H., & Myers, B.J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism, 10(5), 439–451. doi: 1177/1362361306066601
4. Teverovsky, E. G., Bickel, J. O., & Feldman, H. M. (2009). Functional characteristics of children diagnosed with childhood apraxia of speech. Disability and Rehabilitation, 31(2), 94-102. doi: 1080/09638280701795030
5. Miller, A.R., Masse, L.C., Shen, J., Schiariti, V., & Roxborough L. (2013). Diagnostic status, functional status and complexity among Canadian children with neurodevelopmental disorders and disabilities: a population-based study. Disability & Rehabilitation, 35(6), 468-478. doi: 3109/09638288.2012.699580
6. Haring, K., Lovett, D. L., Haney, K. F., Algozzine, B., Smith, D. D., & Clarke, J. (1992). Labeling preschoolers as learning disabled: A cautionary position. Topics in Early Childhood Special Education, 12(2), 151-173. doi: 10.1177/027112149201200203
7. Portuguese Ministry of Education, Decree-law nº 3/2008, 7th of January
8. Portuguese Ministry of Education, Decree-law nº 54/2018, 6th july
9. Pinto, A. I., Grande, C., Coelho, V., Castro, S., Granlund, M., & Björck-Åkesson, E. (2018). Beyond diagnosis: the relevance of social interactions for participation in inclusive preschool settings. Developmental neurorehabilitation, 1-10. doi: 1080/17518423.2018.1526225
10. Hamre, B., Hedegaard-Sørensen, L., & Langager, S. (2018). Between psychopathology and inclusion: the challenging collaboration between educational psychologists and child psychiatrists. International Journal of Inclusive Education, 22(6), 655-670. doi: 10.1080/13603116.2017.1395088
11. Wood, M., & Valdez-Menchaca, M. C. (1996). The Effect of a Diagnostic Label of Language Delay on Adults’ Perceptions of Preschool Children. Journal of Learning Disabilities, 29(6), 582–588. doi:10.1177/002221949602900602
12. Granlund, M. & Lillvist, A. (2015). Factors influencing participation by preschool children with mild intellectual disabilities in Sweden: with or without diagnosis. Research and Practice in Intellectual and Developmental Disabilities, 2(2), 126-135. doi: 10.1080/23297018.2015.1079729
13. Sadler, J. (2005). Knowledge, attitudes and beliefs of the mainstream teachers of children with a preschool diagnosis of speech/language impairment. Child Language Teaching and Therapy, 21(2), 147-163. doi: 10.1191/0265659005ct286oa
14. Algraigray, H., & Boyle, C. (2017, December). The SEN Label and its Effect on Special Education. Educational and child psychology, 34(4)