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Life The difficulty of getting a definitive mental health diagnosis

Getting a clear diagnosis for mental health problems can be a challenge.

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Parents can often be confused about the mental-health diagnoses their children may receive. The older children are, the more likely they are to accumulate multiple diagnoses as they see different specialists along the way, especially if they see specialists from several different disciplines.

Here is an example of what might happen (note that this is not a real patient, although it not an uncommon story):

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By the time Jason turned 12, he had already accumulated six different mental-health diagnoses. Previous clinicians (including a pediatrician, two psychiatrists and a psychologist) had diagnosed him with bipolar disorder, depression, separation anxiety disorder, obsessive compulsive disorder, attention deficit disorder and oppositional defiant disorder. That is one diagnosis for every two years of his life.

This plethora of diagnoses can be the result of several factors and it is important to understand how a diagnosis is made.

All health professionals start with the presenting complaint – the behaviour that brings the child to clinical attention. A careful history is taken from the client and the parents as to when the problem started, what makes it better or worse and what other behaviours can be part of the problem. It is essential to interview the child to get his or her perspective on the issue.

One of the challenges for mental-health professionals is that they don't have the benefit of definitive tests, such as blood tests or X-rays, to confirm a diagnosis, so they have to rely on a "narrative" provided by both parents and children. To gather the most information possible, it's important to get that narrative from multiple sources: parents, child and teacher.

In Jason's situation, only information from his parents was obtained.

Health-care professionals rely on behaviours. For example, Jason had been given the diagnosis of bipolar disorder because he was irritable and cranky and had explosive outbursts. The specialist thought that all those were signs of bipolar disorder. However, for a diagnosis of bipolar disorder, one would have to show that the child also has a manic elevation in mood (unreasonably happy to an excessive degree) and episodes of irritability. There are rules for assigning behaviours to diagnoses (and those rules are contained in our diagnostic manual DSM 5, published in 2013). In Jason's case, the specialists did not accumulate enough evidence of behaviours to give him a diagnosis of bipolar disorder, depression or separation anxiety.

In order for a diagnosis to be given, there has to be evidence of both symptoms and impairment due to those symptoms. Therefore, for example, for a diagnosis of attention deficit to be given, not only must there be signs of short attention span, impulsivity and overactivity, those behaviours have to lead to some impairment in functioning at home, in school and with peers.

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In the absence of impairment due to behaviours, one simply has traits of a disorder, but not the disorder itself. In this case, there was no evidence that there was any impairment due to the oppositional behaviour alone, so that diagnosis was removed too.

The presence of impairment also helps us to decide which intervention to choose. Luckily, we have many effective interventions for children and youth; the issue is to choose which intervention is the right one for which child at which time.

Sometimes we need to implement multiple interventions to get optimal benefits (i.e. both medication and behaviour management for ADHD) or we need to sequence them (psychotherapy first for depression and, if that fails, add medication) to be most efficient. At other times, we, along with parents, may decide that it is more important to start with cognitive behaviour therapy – for example, dealing with Jason's obsessive compulsive disorder instead of prescribing medication for his ADHD because the former might be causing more impairment (refusal to go to school to avoid germs) than his ADHD.

These are all clinical judgments that are made together with the parents and the child, along with a critical discussion of the evidence. Information about diagnoses is shared so that treatment decisions can be made with truly informed consent.

Parents need to be informed as critical consumers of health information, particularly when it comes to mental health, as our diagnoses rely so heavily on a history. That does not make our diagnoses any less reliable or valid; it's just that they are different.

To be informed properly, parents have a right to ask a specialist giving a mental-health diagnosis: "Did you rely on multiple sources of information?" "Did you follow the DSM 5 rule book?" and "Is there evidence of impairment associated with each diagnosis given?" In that way, the right treatment for the most important diagnosis can be chosen.

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