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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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Behavior, Genetics, Health, Intervention, Must Read, Parenting, Questions, Red-Hot Parenting
Friday, February 28th, 2014
Changes in car safety seat labeling have prompted another round of discussion about the best ways to keep our kids safe when they are driving. Similar conversations have been going on when it comes to safety seats on planes as well.
If you are planning to take a baby on a plane, the choice as of now is yours. You don’t have to purchase a seat for your baby (you can hold them if you like), and if you do buy a seat you are not required to bring a car seat.
The debates typically focus on whether or not parents should be required to purchase a seat and in parallel provide a safety seat. The question posed here, for your consideration, is the following:
If a parent purchases a seat for a baby (or of course a child up to a certain age), should airlines have a responsibility to have an appropriate safety seat available? Put another way, do they need to ensure the safety of every passenger who has a seat – and if that means a safety seat, then it means providing (and setting up correctly) the safety seat?
I would say … yes. The airlines have to provide seat belts that confer appropriate safety for their passengers who have a purchased seat. Why shouldn’t they have to outfit a seat for the smallest, most vulnerable passengers?
Find toys that will keep your kiddo occupied while you travel by plane or car at Shop Parents.
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Wednesday, February 26th, 2014
In recent years, the word “success” has been batted around in parenting culture. This series of blog posts considers a number of views of what “success” might mean – and how that influences how we parent.
“The Triple Package: How Three Unlikely Traits Affect the Rise and Fall of Cultural Groups in America” – “Tiger Mom” Amy Chua’s new book co-authored with her husband Jeb Rubenfeld – has promoted discussion because their thesis is that certain racial groups achieve more success than others because of three fundamental factors: high self-esteem, insecurity, and self-discipline. One could debate the assumptions drawn about race and success, or the choice of factors which purportedly promote success. But less attention has been given to the indicators of success.
While “The Triple Package” isn’t about parenting per se, it certainly embeds ideas about development and the factors that influence “successful” trajectories. Thus, through the lens of parenting, the question raised here is if these are really the most important things we would want for our children.
Consider these benchmarks highlighted in the book:
- Occupational Status
- Test Scores
These are certainly outcomes that matter to a degree for our kids. We certainly make parenting choices to positively influence how our kids perform on tests, what occupational status they eventually achieve, and the income level that they reach. But the fact that they are highlighted as the starting point of the thesis under study provides an assumption that these indicators are benchmarks of success.
They may be what defines success for some people, or in fact many people. But I think it’s important, when we think about parenting, to recalibrate our thinking. While these outcomes may be goals – and important ones – for some, they aren’t necessarily the measure of success for many others. And I suspect that carries through in terms of parenting style.
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Friday, December 6th, 2013
As we mark the one year anniversary of the Sandy Hook shooting, it is a salient time to consider the substantial public health challenges that were raised by that tragedy – and that still remain. Three are most prominent.
School safety is an ever-present concern. Although no school can eliminate the potential for a tragedy, strides are being made at many schools across the country to put into place practices and technologies to keep children as safe as possible. It has been suggested that 90% of school systems have made some type of concrete change to improve school safety in response to the Sandy Hook tragedy. Lock down drills have become a reality for children, practiced with the regularity and acceptance of a fire drill. Teachers and administrators are trained to know how to react in the event of an attack and how to best try to secure the safety of their students.
Some schools have video surveillance systems in place that are monitored for potentially suspicious activity. Schools may have changed their policies concerning entry at different times of the day. And at some schools there is a police presence or security guards in place. Yet these types of changes will undoubtedly need to be evaluated, and potentially evolve over time. It does appear, however, that that sad and startling day at Sandy Hook Elementary promoted a nearly universal awareness that no school can be assumed to be safe – and that every school needs to take a comprehensive approach to trying to best ensure their students’ safety.
Gun control – always a polarizing topic – remains a hotly contested issue in the aftermath of Sandy Hook. There have been some actions to promote gun control in some states, and some reactions to ensure gun owner’s rights in other states. As the swinging pendulum of gun control plays out across the country – evidenced by the current swirl of debate surrounding how access to firearms should be regulated – what remains most clear is that we are no where close to coming up with a focused effort to reduce the likelihood of someone with a gun entering a school and killing children and adults. Most influential – and sobering and inspiring – has been the efforts of Sandy Hook parents to promote a ‘cultural change campaign’ to properly orient our attention on violence prevention, particularly gun violence aimed at our children. It is hoped that this effort will inspire a change in our collective mindset that will do away with the philosophical rhetoric about the pros and cons of gun control and gun rights and focus instead on ways to prevent gun violence from permeating our schools.
Mental health remains another core public health issue that has been illuminated by the Sandy Hook massacre. We have yet to get a good handle – at the most public level – on the burdens faced by those with mental illness, the importance of properly recognizing and treating those who suffer, and the myths and realities about the risk posed to society by some individuals. What can be stated with confidence is that despite the substantial progress made over the last few decades in the identification and treatment of mental illness, we simply need much more support for research and intervention.
This unfortunately comes at a time when our national finances are such that research funding has been cut dramatically over the last few years. We just witnessed a government shutdown that kept scientists away from doing their work. Deciphering the inner workings of the brain, the effects of genes on development, and the impact of a multitude of environmental factors that convey risk for mental illness is a task of extraordinary complexity. Bringing sustainable, evidence-based interventions to those in the population who need them is a daunting undertaking. Until we grasp how important this effort is, and embrace how much financial support it will take, we may find ourselves wondering and debating if a future shooting could have been prevented via advances in knowledge and practice.
Although these three public health challenges remain, it is good to know that they are at least not being dismissed or are fading away. We may eventually look back on that horrific day at Sandy Hook Elementary as a turning point and catalyst for making real and sustainable progress in our efforts to keep children safe in school.
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Tuesday, November 19th, 2013
The debate circulates periodically in the parenting world – is it better to be an only child, or to grow up with siblings? Research findings will be cherry picked to support whatever position is endorsed. Personal experience will be cited. But as someone who has observed families – lots of families, all across the country – in many settings (research and clinical), I have a very simple answer to the question of which is better:
Now, of course there are plenty of unique features to being an only child, or being a sibling. But there is so much variation out there it seems absurd to me to claim that, structurally, being an only child versus having siblings is inherently preferable. And I’m not inclined to be swayed by trends in certain studies that point to small statistical effects. Only children are not “spoiled” unless a parent spoils them. There are plenty of “spoiled” children who have siblings. Growing up with a sibling can set a platform for the most intimate and long-lasting relationship a person may have. Then again, there are siblings who can’t stand each other. Some kids who don’t have siblings wish they did – and others grow up fine without one. Come up with any scenario and you can find someone who fits the profile – and someone who doesn’t.
Let’s face it, what really mattes is how a child is brought up – whether there is only one, or more than one, child in a household.
Raising an only child has unique demands. Raising more than one child does as well. But in either case, there’s either good parenting, or not so good parenting – or put another way, a healthy family climate or one that is problematic. That’s the big effect you will see in the data that will tell you plenty about a child – and what kind of person they become.
Plus: Are you ready for another child? Take our quiz and find out!
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