Psychiatrist Sally Satel recently highlighted the potential drawbacks of proposed changes to the Diagnostic and Statistical Manual of Mental Disorders, fifth edition, or DSM-5, the manual used by mental health professionals to assess patients and guide treatment. Citing the new diagnoses for binge eating, hoarding, and hypersexuality as examples, she points to how natural variations in human behaviour may now be redefined as pathological, making previously normal people candidates for medical treatment.

Dr Satel also discusses the more controversial diagnosis of “psychosis risk syndrome”. Created to identify adolescents or young adults most likely to develop the hallucinations and delusions characteristic of debilitating mental illnesses like schizophrenia, it aims to target them for early treatment. Dr Satel argues that while the desire to forestall a full-blown psychiatric illness is laudable, the available drugs are not especially effective, whereas the potentially stigmatizing effects of such diagnostic labels are real. Since an estimated 70 percent of individuals identified as high risk for psychosis never go on to develop the illness, she questions the wisdom of exposing otherwise healthy adolescents and young adults to potent antipsychotic medications, as well as to the stigmatizing label itself.

That was precisely my concern when my young son was diagnosed in the mid-90s with Tourette’s syndrome, which would require drug treatment. This disorder has often been portrayed in sensational television dramas and talk shows in its most severe form, with people unable to control random jerky movements and profanity in their speech. This diagnosis of my 7-year-old boy alarmed me, as it would most parents, and generated fears that the condition might worsen over time without immediate treatment. But despite the paediatric neurologist’s recommendation, I was reluctant to use drugs to rid my son of grimaces and eye tics that, while distracting and even annoying, were still relatively innocuous. What negative side-effects of the medication would my otherwise healthy, bright and lively young son experience? I was determined to make a rational decision based on facts and not on emotionally overwrought projections of a negative future based on hype.

Unlike the vast majority of parents, I was atypically well informed, having used the DSM III during my own graduate clinical psychology training in the early 80s. As a result, I was especially attuned to my son’s development several years later as a new, full-time mother. I tracked the “soft neurological signs” that sometimes portend problems, such as toe-walking, fascination with spinning objects, and the occasional repetition of his last word or phrase, called palilalia. I was pleased when these symptoms waned over time, but by first grade my son’s eye blinking, facial twitching, and shoulder shrugging became incessant. Concerned with the possible consequences on his social interactions, I promptly investigated what other parents might have ignored until pressed by a teacher or paediatrician.

Although my academic background may have over-sensitized me to irregularities in my son’s developmental history, it also allowed me to evaluate a professional’s diagnostic assessment in a way that few other parents can. My awareness of the full range of possible tic disorders, each with its precise diagnostic criteria and its attendant features, prevalence, course, and possible gender and familial patterns, enabled me to challenge and ultimately reject the paediatric neurologist’s diagnosis of Tourette’s and avoid its negative impact on my son’s life.

For instance, I noticed that whereas the DSM III stated that “coprolalia, the irresistible urge to utter obscenities is present in 60% of cases”, that figure dropped to “less than 10%” and was “present in a few individuals with this disorder” in the DSM IV, the manual in use at the time of my son’s diagnosis. So whereas the most florid and ostracising symptom was underemphasized over the 16-year period between revisions of the diagnostic manual, its representation in the media and in the public imagination loomed larger than ever. Could it be, I wondered, that clinicians’ tendency to diagnose Tourette’s had also increased accordingly, in response to a heightened public awareness in general? Were both clinicians and parents well-intentioned but ultimately too hasty in identifying minor variations in children’s development as abnormal and requiring prompt medical intervention?

After long and thorough deliberation with my husband, I informed the neurologist we’d take a “wait and see” approach. The tendency to defer to experts’ assessments is strong, and I experienced the same anxiety, doubts, and fears that all parents face in similar circumstances. But I resolved to tolerate the uncertainty of our decision and deal with the emotional fallout myself, rather than burden my son with a premature diagnosis and aggressive course of treatment. As the severity and frequency of his tics diminished in short order and his development progressed smoothly, our decision was proven justified. Today he’s thriving socially and academically in university, without any residual evidence of his childhood neurological symptoms.

This anecdotal evidence supports Dr Satel’s call for caution in defining, diagnosing, and treating mental illness. It’s a reminder, to clinicians and parents alike, that the benefits of treatment must be carefully weighed against the costs of unnecessary and potentially harmful procedures. Thankfully, credible sources of medical information are now readily available online to parents wanting a greater role in that important decision-making process.

Mary Santangelo writes from Montreal.