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On Risks and Reality: Communicating the Difference between Autism Risks and Diagnosis

2015; American Medical Association; Volume: 17; Issue: 4 Linguagem: Inglês

10.1001/journalofethics.2015.17.4.nlit1-1504

2376-6980

Matthew A. Rysavy, Jody R. Murph,

Child and Adolescent Health

One of the scariest parts of raising a child is the sense of not having control, of not knowing what is coming or what to do about it.We want the best for our children; we want them to be healthy and safe, and we do not want to make mistakes.So, having information about what might be expected-on the likelihood of certain conditions or diseases, for instance-should provide some relief.But does such knowledge also have a downside?Rossi et al. [1] explore this issue in the context of communicating with parents about risk of autism.As a student of medicine and epidemiology and a general pediatrician, we found that their article raised many points relevant to our work.It is important to distinguish between risk and diagnosed disease.Hearing a bump in the night might lead you to suspect that there is a mouse in your house-but a bump is not the same as an actual mouse.In the same way, risk indicates an increased probability of some condition or disease-but risk is not the same as a real diagnosis.Risk and diagnosis are related: risk increases the likelihood of a diagnosis.Moreover, diagnosed disease may lead to increased risks for another condition (the presence of a mouse may increase the likelihood that other critters entered where the first one did).However, the concepts of risk and diagnosis remain distinct-the difference being that risk information, by definition, reflects uncertainty.Rossi and colleagues point out that, because of such uncertainty, information about autism risk may sometimes cause harm to families by: (1) arousing unnecessary fear or anxiety, (2) blaming or stigmatizing parents and children, and (3) leading families to take actions that are not in their best interests.This last harm may occur when families pursue unnecessary-and sometimes invasive and costly-therapies and diagnostic interventions or avoid potentially beneficial ones.