DSM-5: Why (and What) Parents Should Know About It

Tuesday, May 21st, 2013

As a parent, you may be wondering why such a fuss is being made about the release of the DSM-5 (the 5th edition of the Diagnostic and Statistical Manual of the American Psychiatric Association). Here is a brief overview of why it may be (0r become) relevant to you – and why it’s important to learn about the issues that are being debated.

Many Kids Will Experience A Mental Disorder

The primary reason parents need to know about DSM-5 is that many psychiatric disorders that originate in childhood are not uncommon. Consider some rough numbers:

• Around 1 in 50 kids are being diagnosed with Autism Spectrum Disorder
• Around 1 in 10 kids are being diagnosed with Attention Deficit Hyperactivity Disorder
• Around 1 in 10 kids are being diagnosed with Conduct Disorder
• Around 1 in 10 kids are being diagnosed  with an Anxiety Disorder
• Around 1 in 10 kids are being diagnosed with a Mood Disorder
• Around 1 in 2 teens have reported meeting diagnostic criteria for at least 1 disorder in their lifetime

Having a good look at these numbers means that lots of parents will be faced at some point in time with the possibility of having their child evaluated for a disorder – and will need to consider treatment options. That’s where the DSM-5 comes in.

DSM-5 Is The Primary Guide For Clinical Diagnosis

The DSM-5 is the handbook used by a broad range of health care professionals who evaluate individuals (youth and adults) for potential psychiatric disorders. It’s an authoritative guide that reflects a consensus statement on the best way to categorize disorders along with the specific symptoms and rules to be used to make a diagnosis. The intention is to make it reflect current clinical thinking that is supported by research. It is not perfect, it reflects a particular point of view by those charged with generating the guidelines, and there is much debate (and criticism) of the diagnostic approach taken by the DSM-5.

All that said, the fact remains that the DSM-5 will be used if you bring your child to a health care professional for evaluation. The clinician will consider lots of information during this process – the DSM-5 does not dictate what information they use and how they get it. It’s intended to serve as a guide to the endpoint of making (or not making) a diagnosis. And it serves as the template for a health care provider to request reimbursement from insurance companies to support treatment.

Why All The Controversy Now?

The DSM-5 is a revision of the prior version which was released in 2000. As such, it includes a number of changes – some of which are minor, some of which are major. Beyond the more general discussions about what’s “normal” and what isn’t, the key things that parents need to know are the practical implications of the changes. As a parent, you should be aware of the changes to disorders that are especially relevant for youth. Here’s a brief overview:

Autism Spectrum Disorder: Major changes have occurred. In the prior version, a spectrum of disorders were available to clinicians, reflecting important variations in symptom profile. Four disorders were listed: Autistic Disorder, Asperger’s Disorder, Childhood Disintegration Disorder, and Pervasive Developmental Disorder Not Otherwise Specified. The key change is that there is now just one diagnosis made of Autism Spectrum Disorder (ASD) – and the other diagnostic categories will no longer be used. Proponents of this change suggest that it is more accurate by defining the core features of ASD that were common to all of the disorders in the spectrum and allowing for differences in severity level under one diagnostic umbrella. Critics suggest that a number of youth who require diagnosis and treatment will not be diagnosed – and that the reliance on severity levels may make it harder for kids with more mild symptoms to receive treatments they need. There’s no answer to these issues yet – they will unfold over time as data are collected. But if your child is evaluated for ASD, it’s in your best interests to be up on the debates and have informed discussions with your clinician in order to make sure you are advocating for the best care for your child.

Attention Deficit Hyperactivity Disorder (ADHD): Minor changes have occurred. In the past, there had to be evidence that a child showed symptoms of ADHD before age 7. That has been extended to age 12 in the DSM-5. There is also more attention to making diagnoses in adults more manageable. All of these changes mean that if you have an older child who has never been diagnosed with ADHD, they might now be evaluated differently. It’s also important to know what isn’t in the DSM-5 – a lower limit on age. That is, there are no guidelines in terms of how young a child may be when making a diagnosis. This is relevant as there have been (controversial) suggestions that kids as young as 4 years of age could be diagnosed (and many in fact have). Know that DSM-5 does not offer guidance here and you will need to make up your own mind if this makes sense for your child –  hopefully with the appropriate guidance of a well-trained clinician. Overall, the worry here is that kids of all ages may be overdiagnosed.

Conduct Disorder (CD): Minor changes have occurred. Conduct disorder represents a persistent pattern of rule breaking behavior and behavior that violates the rights of others. It can be diagnosed in young children as well as teens. The primary change has been to incorporate symptoms indicating a callous and unemotional interpersonal style. The thinking here is kids with this profile may be especially prone to experience problems in the future – and require more intensive management and treatment. Be aware that these symptoms will receive more attention now in the diagnostic process.

Disruptive Mood Dysregulation Disorder (DMDD): This diagnosis reflects a major change – it is a new diagnostic category. The idea was to provide a diagnostic option for kids who show persistent irritability and extreme emotional and behavioral outbursts. The rationale for developing the DMDD criteria was to make sure kids who show these symptoms do not get mislabeled as having pediatric bipolar disorder – but still may qualify for treatment. The controversy is that many feel that there is not sufficient evidence to support this new diagnosis – and in the worst case scenario kids who do not have psychiatric problems will be diagnosed with a disorder and get treatment that they don’t need.

Over the next few days, I will publish blog posts that consider each of these four disorders in greater detail, and provide some guidance for parents to help sort through these complex issues. There are no straightforward answers to be found – rather parents need to know about DSM-5 so they can be prepared to navigate the best decisions for their child.

When A Child Is Misdiagnosed

Saturday, October 29th, 2011

Now and then, I come across a blog post that knocks me out because it says so much – especially when it focuses on issues that I’ve been wrestling with and have struggled to articulate. Such is the case with Ellen Seidman’s post Can Kids Be Wrongly Diagnosed With Cerebral Palsy? Yes, It Turns Out. If you haven’t read it yet, please do – it focuses on 2 kids who were misdiagnosed with Cerebral Palsy (CP) and eventually re-diagnosed (after years of effort by their parents) with a condition that was treatable with medication.

I’ve read this post 10 times since it was published. Why? Because there are so many important points covered. The ones that hit me over the head are as follows:

• Biological conditions in kids can be misdiagnosed. Even conditions as impairing as CP. I’ve known this, yet there is something about a concrete example that clarifies issues for me. In this case, I’ve been writing about slippery diagnoses for behavioral and emotional conditions, including ADHD and a newly proposed disorder called Disruptive Mood Dysregulation Disorder or DMDD. I’ve talked about over- and under-diagnosis. But I haven’t said clearly that a big issue can be misdiagnosis, particularly when we don’t have biomarkers or other tests that can assist not just diagnosis but differential diagnosis (deciding between diagnoses).
• Misdiagnosis can lead to an ineffective treatment plan. Okay, this sounds obvious, but the thing is we need to be conservative about offering medication as a treatment plan when it’s not at all clear that a child has one condition versus another condition (or even that they have a condition). This can be the case when we are trying to apply the diagnostic crieria of ADHD to toddlers, or when kids may receive a diagnosis of DDMD in part because they don’t meet criteria for other disorders.
• I sympathize with parents of kids who seek out treatment and evaluation because the fact is that we don’t just want to help kids – we want to believe that we can make a condition go away. So the idea of diagnosis and biological treatment is seductive. As Ellen says:

While I do not mourn my son’s CP and adore every inch of who he is, if it were possible to make it all go away with a pill, of course I would.

Unfortunately, the reality is that in many cases medication doesn’t cure behavioral and emotional conditions – more typically the goal is to try to reduce the frequency and intensity of the most impairing symptoms.

The point of all this is that diagnosis and treatment is not a perfect science. Practitioners do not have an easy task when kids present with emotional and behavioral symptoms. And I’m not opposed in principle to pharmaceutical interventions with kids – many parents of kids with ADHD would be able to report that they do improve their child’s functioning. My concern is that we are seeing more and more investment in the “diagnosis -> medication” model for complex behavioral and emotional syndromes in younger and younger kids, and less emphasis on non-biological intervention plans that try to encourage behavioral change without reaching too hard for diagnoses that may not always be illuminating – and treatments that might not be justified.

Disruptive Mood Dysregulation Disorder: Another Diagnosis, Another Prescription?

Monday, October 24th, 2011

There is debate swirling around a proposed new diagnostic category in child psychiatry: Disruptive Mood Dysregulation Disorder or DMDD. The online conversations illuminate a phenomenon that makes me worry: when parents and clinicians can’t control a child’s behavior, there is a tendency to diagnose a disorder, and then use the diagnosis to justify medication. 

Look, I sympathize with every parent who has difficulties in managing their child, especially one who is highly irritable and has extreme outbursts and tantrums (which is the territory of the DMDD label). The reality is that some kids are much tougher to parent than others. I also understand the frustrations of practitioners who find that conventional behavioral treatments are not as effective as we’d like them to be for some kids. And I fully get that some kids do benefit from medications.

But I am getting concerned that we are moving towards a system that uses diagnosis and medication as a first line of attack whenever there are behavioral issues in a child. In the case of DMDD (which is being considered as a new diagnostic category in the 5th edition of the Diagnostic and Statistical Manual of the American Psychiatric Association), it could be argued that the primary motivation is to provide a diagnostic label to kids whose profile doesn’t neatly fit other alternative diagnoses (such as bipolar disorder, ADHD, or oppositional defiant disorder). I’ve read that the idea here is that this new diagnosis will prevent misuse of the other diagnoses when they are not really appropriate. But that raises the following question: Why do we need to apply a diagnosis? Unfortunately, in many cases the reason is that a diagnosis goes hand in hand with a prescription. And if this happens without intensive efforts to use behavioral methods to change both child and parent behavior, the only thing that would be achieved is finding a way to suppress behavior, not manage it.

The discussion about DMDD comes on the heels of the suggestion that kids as young as 4 can be diagnosed with ADHD – and also prescribed medication for it (click here to see my take on that topic). At what point will we stop relying on arbitrary application of diagnostic labels and immediate prescription of drugs when it is far from clear that many of the targeted children suffer from a medical disorder? And what ever happened to using behavioral methods to shape development in kids, even those who may display “difficult” behavior?

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