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.