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Tuesday, May 20th, 2014
The Centers for Disease Control and Prevention (CDC) have provided new data suggesting that it is becoming common to not only diagnosis attention deficit hyperactivity disorder (ADHD) in 2- and 3-year-olds – but also to prescribe medication to these toddlers. As reported in the New York Times, data collected by the CDC suggested an estimate that 10,000 young toddlers are being given stimulant medication. And, of course, it could be more and the number could be growing.
There are many problems with diagnosing and medicating young toddlers for ADHD. Here are three primary issues:
ADHD is difficult to diagnosis – even in older children. While comprehensive, multidisciplinary clinical teams can offer productive diagnostic assessments of school aged children, ADHD is still difficult to diagnosis with certainty. It’s clear from prior analyses and studies that many school aged children are being given diagnoses of ADHD without such careful clinical evaluation and put on medications that they may not need. Given this, the idea that ADHD can be reliably diagnosed in 2- and 3-year-olds is shaky, to say the least – or simply not advisable.
The effects of stimulant medications in young toddlers have not been studied. Stimulant medications require careful clinical monitoring in school-aged children. It is controversial to administer them to 4- and 5-year olds. Prescribing them to 2- and 3-year-olds is not within the clinical boundaries. There is a reason that drugs are studied and approved for specific conditions and age groups. We don’t know the side effects of stimulants on young toddlers or how they influence the developing brain.
Behavioral management of toddlers is important but can be achieved without medication. Young toddlers need to be socialized. They need to have some structure and learn boundaries. They need to know how to modify their behavior in different settings. These are developmental goals, not the stuff of psychiatric diagnosis. If parents are having difficulties with young toddlers – and as we know, they can be rambunctious, as they should be – it’s certainly worth thinking about getting some advice or even learning behavioral management techniques that can be especially effective with some youngsters. The idea that this process may be circumvented by inappropriate clinical diagnosis and drug treatment is very troubling – especially since there is good evidence that behavioral techniques work and no evidence supporting the use of stimulant medication in young toddlers.
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Monday, March 31st, 2014
The latest prevalence estimate of Autism Spectrum Disorder (ASD) – 1 in 68 – reignites conversation that we may be overdiagnosing ASD. In part, to some the estimate just feels too high based on clinical and personal experience. And there is worry that we may be flooding an already overwhelmed evaluation and treatment system.
These concerns echo the debates that surrounded the changes in diagnostic criteria that were introduced in the DSM-5 in May 2013 which, to some, were implemented to protect against overdiagnosis of ASD, as I described last December:
The reformulation of the diagnostic criteria – which led to a discontinuation of the category of Asperger Syndrome in favor of a broad-based category of Autism Spectrum Disorder (ASD) – spurred concerns that many youth would no longer qualify for a diagnosis and hence have their intervention options limited. Others suggested that more precise diagnostic criteria are needed to ensure that ASD does not get overdiagnosed. While we await empirical resolution via publication of well-designed studies, it’s clear that the DSM-5 debate will stand out as an important time in which we wrestled (again) with the best way to be inclusive in diagnosis without expanding diagnostic criteria too broadly.
As a result of the changes in DSM-5, it may be that a few years from now we will see a “recalibration” of the prevalence of ASD. The speculations have been that about 10% of children now diagnosed with ASD will no longer meet criteria.
What do we make of these changing estimates in the prevalence of ASD, which have increased tremendously over the past decade and may, sometime in the near future, begin to decrease? This complex issue does not lend itself to a singular answer. Considering a number of points may help to provide some perspective on how we discuss this question.
PREVALENCE RATES FOR DISORDERS CAN BE “HIGH”
While, as noted above, clinicians, researchers, and policy makers often attempt to interpret the rate of a disorder as a means of ensuring appropriate diagnostics without overdiagnosing, the fact is that there is no magic number or prevalence rate for a disorder. Consider the following:
- Epilepsy is estimated to affect somewhere between 4-10 per 1000 people; and nearly 10% of the population will experience a seizure in their lifetime
- Asthma affects almost 10% of children
- More than 8% of the population is reported to have diabetes
The point? Disorders which can be validated biologically can affect large numbers of people in the population. This means that they are common disorders – not overdiagnosed conditions. The implication for ASD? Simply put, an estimated prevalence of “1 in 68″, in and of itself, does not necessarily imply overdiagnosis.
RATES CAN CHANGE OVER TIME
Part of the concern with the rate of ASD is that it has changed so much over the past decade. The estimates made by the Centers for Disease Control and Prevention (CDC) have gone from 1 in 150, to 1 in 110, to 1 in 88, and now to 1 in 68. The rates of asthma have also gone up over the past decade, though not nearly as dramatically as those for ASD. A combination of factors have influenced this increased prevalence of asthma, including better recognition and diagnosis, changes in the definition of the disorder, and possibly increases in pathogens in the environment. The takeaway here is that an increase in prevalence over time is not a sufficient argument for overdiagnosis.
THE KEY CONCERN IS THE ROOT OF THE INCREASE OVER TIME
The crux of the debate about ASD is that we may be artificially increasing the prevalence. To consider this point, we need to focus on two two related factors that are primarily responsible for the dramatic changes in ASD prevalence.
First, there is much better screening, recognition, and evaluation. This is a positive step forward – early evaluation leads to early intervention. But as noted in the most recent CDC report, there are still children (primarily those in specific ethnic groups) who are not diagnosed at the same “high” rate as others. So simply lowering the bar for early evaluation is not necessarily a good step forward, and in fact may be counterproductive for many children in the population.
Second, there has been an increase in diagnosing “higher functioning” ASD, that is, ASD without a compromised cognitive level. This is where the conversation about overdiagnosis starts – and where the DSM-5 may lead to a reduction in prevalence over time. The sticky point is that as ASD, by definition, is recognized to occur along a spectrum of severity, it becomes hard to know where to draw the line. At what point would we be missing cases that could profit from intervention? At what point are we pathologizing normative variation in social functioning? There is where we need more informative data on the impact of interventions for those diagnosed and more pointed discussion.
Let’s look at a very different example – potential changes in how high blood pressure is being diagnosed in those 60 years of age and older. New guidelines have suggested that the target blood pressure for determining treatment is 150/90, as opposed to 140/90. The result would be that millions of adults over 60 would no longer be “required” to take medication for high blood pressure. This is a current controversy in medicine and it is being debated. The point here is that the biomedical and health sciences have to make these kinds of decisions for many disorders, and that controversies continue to arise. In other words, these are not simple issues, and they are not resolved easily. We continue to gather more information and bring more opinions to the table to come up with our best practices – and this same principle applies to the current and future conversations about ASD.
SO IS ASD BEING OVERDIAGNOSED?
Right now, this is an important question to ask, but rather than demand an answer, we need to gather more informative data and have more informed discussions that go beyond the prevalence rate. We have these discussions frequently about attention-deficit hyperactivity disorder (ADHD), and they continue. We worry that too many kids are being arbitrarily diagnosed with ADHD and that we may artificially inflate rates of ADHD by making inappropriate demands of toddlers and young children. The concern with ADHD is that we may be preventing kids from being kids, slapping them with inappropriate labels, and giving them medications that are not needed.
The concern with ASD is somewhat different. We are not over-medicating youngsters who are receiving a diagnosis of ASD, particularly those who are “high functioning.” We are offering behavioral interventions to improve social and cognitive skills. What we need to know is if some kids who would receive these kinds of interventions don’t need them or don’t profit from them. That’s essentially the tipping point in the argument described above about how to define high blood pressure. We should move beyond the prevalence rate and begin to look more closely at the efficacy of interventions and if there are better ways to define which kids can be best served by a diagnosis.
But what we don’t want to do is arbitrarily decide that the prevalence rate is “too high” and that we need to lower the bar for screening and evaluation. That would be a big mistake and undermine all the progress made to date in early surveillance and early intervention. Whatever the “true” prevalence rate is (and it will be a moving target), what we do know is that many young children can profit from early intervention and that we need to keep momentum going on understanding more about the causes of ASD, how to best diagnosis it, and how to develop even more powerful interventions.
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Friday, March 28th, 2014
It is now estimated that 1 in 68 children are diagnosed with Autism Spectrum Disorder (ASD), based on a report issued by the Centers for Disease Control and Prevention. This detailed CDC report deserves a close look as there are a number of important findings on the prevalence of ASD and factors that influence evaluation and diagnosis.
THE RATE KEEPS INCREASING: As described by the CDC, the new estimate is 30% higher than the prior estimate made just 2 years ago (1 in 88). The estimated prevalence of ASD has gone up tremendously in the last decade, and it is assumed that improved recognition and diagnosis is the primary factor. The implication here is that we have underestimated the true rate of ASD and as such the new data suggest an urgency in mobilizing resources to understand the causes and accelerate the delivery of interventions (see, for example, the reaction from Autism Speaks to the new estimate).
SEX OF CHILD MATTERS: ASD has always been more prevalent in boys. The new data continue to support that, as 1 in 42 boys in the study received a diagnosis, as compared to 1 in 189 girls. The reasons for this sex difference are still not well understood. But it’s clear that boys in particular are especially likely to be diagnosed with ASD – 1 in 42 is a very high prevalence for any disorder. So anticipate increased efforts at screening for ASD by pediatricians, especially for boys. And it is noted that ASD should be screened for in girls with more intensity as well, as 1 in 189 is a high prevalence for a disorder.
ETHNICITY MATTERS: While the rates of ASD continue to go up, it is diagnosed more frequently in white, non-Hispanic children. Non-Hispanic white children are 30 times more likely to receive a diagnosis as compared to non-Hispanic black children, and nearly 50% more likely to be diagnosed than Hispanic children. Evaluative and diagnostic efforts need to increase for children in these ethnic groups.
ALL LEVELS OF COGNITIVE FUNCTIONING ARE AFFECTED: Nearly half (46%) of the diagnosed cases in the study had cognitive abilities in the average or above average range. This is potentially one factor that has increased the estimated prevalence over time, as there is more recognition of symptoms of ASD without cognitive/intellectual impairment. Level of cognitive functioning is important clinically in terms of managing other potential conditions and planning interventions – but it’s clear that ASD is being diagnosed across all levels of functioning.
ASD IS STILL DIAGNOSED LATER THAN IT COULD BE: Although recognition of ASD has certainly increased over the last decade, the evaluative and diagnostic efforts are still being done later rather than sooner. The CDC suggests that less than 50% of the diagnosed cases were evaluated before age 3, and that the majority of diagnoses were made after age 4. Reliable screenings of ASD can be made by 2 years of age, and it is imperative that early detection is encouraged, as there are interventions that can begin at these earlier ages. So while detection of ASD has improved over time, we need to see evaluations done at younger ages to ensure that children with ASD receive interventions as early as possible.
WILL THE RATES CONTINUE TO RISE?: This question is raised because of the change in diagnostic criteria offered by the DSM-5, which was introduced in May 2013. Note that the current study collected data in 2010, using the prior version of the DSM (the DSM IV-R). There has been much speculation that the prevalence of ASD will decline given the new criteria. However, we are years away from getting the answer to that question, given the amount of time that it takes to mobilize these intensive data collection efforts. But it’s something to keep in mind for the future.
WHAT ARE THE MOST IMPORTANT IMPLICATIONS OF THE “1 in 68″ STUDY?: Clearly, the need for earlier detection is key – we can’t confuse the increasing recognition with early detection. More vigilant efforts need to be applied to evaluate children in every ethnic group. And while the rate of ASD in girls is much less than that for boys, keep in mind that “1 in 189″ is still a very high prevalence, so efforts to detect ASD in girls should also be intensified. For parents, the most important point is to be aware of early signs of ASD, and to work collaboratively with your pediatrician to monitor your child’s early development and seek out further evaluation if necessary as young as possible.
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Monday, April 1st, 2013
The latest numbers on the rate of ADHD are extraordinary. The New York Times has reported data collected from the Centers for Disease Control and Prevention which suggest that 11% of youth (between 4 and 17 years of age) have been diagnosed with ADHD at some point in their lifetime.
This is troubling – primarily because the data come from phone surveys of parents. This means that parents are receiving this diagnosis at unprecedented rates – not that kids are being properly diagnosed with ADHD at higher rates than before. It is too easy for kids to get labeled ADHD and not go through the comprehensive screening that should take place as administered by a multidisciplinary team of professionals.
It’s becoming clear that ADHD is being used as a label to try to provide a quick handle on behavior that may – or even may not – be somewhat troublesome. ADHD involves much more than not sitting still and not paying attention. All kids exhibit “ADHD” like behaviors now and then. It’s a difficult condition to diagnose because it is based on increased frequencies of a number of behaviors across a number of contexts (home and school) for a sustained period of time which cause impairment for the child. Without a detailed diagnostic process, it can be too easy to misread normative behaviors as symptoms of ADHD.
Part of the increase comes from diagnoses of older kids including those in high school. Diagnostic criteria are beginning to reflect the thinking that symptoms can develop later in childhood and even in the teen years (and not just the early years). That said, it can also become another convenient label for a kid who is not doing well in school. At the other end of the spectrum, diagnosing preschoolers can raise related issues in terms of figuring out which kids are really showing early signs and which kids are just being kids.
There are a number of problems with overdiagnosis. Kids typically get treated with drugs that are not appropriate for them. They get labeled rather than receive the kind of attention that they deserve (for example, to improve their engagement in the classroom). And some kids get diagnosed simply because they are in very large classrooms which promote inattention and not sitting still.
The less obvious issue is that the cursory diagnosing that may be going on is also a disservice to kids who do suffer from ADHD. They should be getting full assessments and comprehensive treatment plans that find optimal combinations of psychosocial intervention and, when necessary, well monitored use of drug therapy. Tossing around labels and drugs as a diagnostic and treatment strategy is not going to give them the help they need, especially since we know that ADHD can persist into adulthood and cause much in the way of academic and social impairment.
The bottom line? If you are a parent, and you (or someone else) suspects that your child might have ADHD, try to seek out an assessment from a multidisciplinary team that has the requisite experience to know how to sort out normative behaviors and issues from clinically meaningful ADHD. You might need to network with other parents, your pediatrician, and educators to locate a provider. But it will be worth your time and effort to make sure your child isn’t misdiagnosed as having ADHD – or not given the proper assessment and treatment plan if they do show the clinically meaningful symptoms of ADHD.
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Saturday, March 31st, 2012
This week you all heard about the recent CDC report on the rising rate of autism spectrum disorders (ASD) (click here if you didn’t read the synopsis on Parents News Now). And you have had a chance to hear experts answer a number of important questions via To The Max (click here if you didn’t read it yet). What I’d like to offer is a consideration of the CDC report in light of the current debate going on about DSM-5, the new version of the diagnostic manual to be used by the American Psychiatric Association.
If you recall, not so long ago there were troubling suggestions that the proposed revisions to diagnostic criteria could result in a substantial number of youth no longer meeting the definition of ASD. This issue is far from settled, and the new CDC report acknowledges that the estimated rate of ASD could change (meaning it may decline) once new diagnostic criteria are in place. But there is a more troubling concern. As it was explained to me by Dr. Gil Tippy, the real issue comes down to this: the DSM-5 approach will “lump” all the ASD subtypes into one clinical diagnosis of ASD, but then apply severity criteria to each individual. This is the slippery slope, because while the rate of ASD may not be affected, a substantial number of youth may be rated clinically as having only “mild” impairment and thus potentially lose insurance coverage for services that their kids desperately need. Keep in mind this is, in a sense, simply a consequence of the language of the proposed DSM-5. If the various subtypes of ASD were “split” into separate diagnoses rather than “lumped” these severity criteria would not be necessary.
There is no perfect formula here. Diagnostic criteria are always revised in light of current understanding of both the causes of a disorder and how it is expressed clinically. I’ve personally witnessed drastic changes in the estimates of ASD from the early 1980s until now: when I was in college, the rate was 4 in 10,000 – now it’s 1 in 88. Much of this recognition has come from refining the diagnostic criteria and developing standardized methods for diagnosis that can be applied reliably by clinicians. But we all have to wary of the paradox that may emerge: just when we acknowledge the extent of the ASD epidemic, we may also be putting into place a diagnostic system that will decrease access to the interventions that are crucial for improving many kids’ lives. And it’s well established that these interventions need to start as early as possible and persist as long as possible to give kids with ASD the best possible developmental outcomes. Perhaps it’s time that science and practice be given equal consideration in diagnostic systems, and we all mobilize to find ways to be sure that we can, as a society, make services available and accessible for all youth who need it.
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