Posts Tagged ‘ Autism Speaks ’

“1 in 68″: The New Data On Autism Spectrum Disorder

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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Why Every Parent Should Be Aware Of Autism

Monday, April 29th, 2013

As Autism Awareness Month is coming to a close, it’s important to remind parents why they need to be aware of autism spectrum disorder (ASD). 

ASD is no longer a rare disorder. The estimated rate keeps rising. Parents need to be aware of the most telling signs in order to promote early recognition in their kids – and also provide a platform for understanding why a pediatrician may broach the subject.

Such early recognition is essential because early intervention can make a huge difference for a child with ASD. New interventions hold particular promise. While intervention at any time is beneficial, it’s clear that the earlier it starts, the more effective it may be.

Even if ASD hasn’t touched your life directly, it’s still important to know something about it. ASD has become, in a way, like cancer – it seems like we all know someone with cancer. You may have a friend who will have a child diagnosed with ASD in the next few years. Your kid may become friends with someone who has a sibling with ASD. Your kid may become friends with a child who has ASD.

Here are a few good links to follow to learn more about ASD:

Autism Speaks

National Institute of Mental Health

Child Mind Institute

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Autism And The Immune System: What’s The Take-Home Message For Parents?

Friday, August 31st, 2012

Last week, an essay was published in the New York Times describing the hypothesis that one of the causes of autism involves a dysfunction in the immune system. In this opinion piece, autism was described as an inflammatory disease that starts during gestation (in the womb). The author speculated that 1 in 3 cases of autism may be due to mechanisms relating to problems with the immune system. 

This line of research is certainly being pursued. Autism Speaks, for example, published a news report in response to the opinion piece, in which they discussed how they have, and continue, to support research that examines the role of the immune system as one of the pathways that may influence the development of autism. That said, they make two very important points:

1) Researchers disagree on the extent to which immune system dysfunction actually is a cause of autism – it may be that the immune system responds to brain and developmental changes that are due to other causes

2) There is currently no evidence that treatments for autism that are rooted in treating an immune system dysfunction are effective – though some are under study

I would add the following:

3) There is no definitive evidence that 1 in 3 cases in autism is due to immune system dysfunction, and as of now there are no diagnostic tests that would screen for this with precision

It’s important that science gets discussed in the popular press, and that parents have an opportunity to become informed on the latest thinking and research. However, opinion pieces – like the one in the New York Times – should (in my own opinion) present a more balanced viewpoint that accurately assesses the landscape (including divergent or more tempered opinions) and the real implications for parents right now. Without that, parents who read these pieces may come away with take-home messages that are not really accurate.

Having a child who has been diagnosed with autism changes a parent’s life. Theories come and theories go – and the realities of the difficulty in elucidating the causes of autism persist. When introducing relatively new ideas into the mainstream, I would hope that authors would exercise more caution with their viewpoints, and understand that, in the end, parents just want to know where things really stand – with more grounding and less hyperbole.

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Early Screening For Autism: Moving Forward, Not Backward

Wednesday, June 22nd, 2011

autism speaks logo.jpegLast week a review paper published in Pediatrics suggested that there is insufficient evidence to support routine screening for autism in toddlers. While this paper — which is a conceptual piece based on literature review and not a scientific study per se — points out a number of legitimate challenges in screening for autism, the conclusion goes against the current tide of thinking which emphasizes the importance of early identification, particularly in toddlerhood. As such, my impression is that the conclusion of this paper moves our thinking backward, rather than forward.

One of the biggest changes in parenting advice in recent years has been shifting from the “wait and see” approach to “learn the signs and act early.” The idea is to help parents learn about the most important developmental milestones and to be aware of potential signals of problem areas — so that they can work with their pediatrician to track development and determine if and when intervention would be productive. Why? Simply put, early intervention is more likely to have the most pronounced long-term effects on development.

One of the most exciting areas of research on autism focuses on testing new methods for early identification and intervention. The organization Autism Speaks — which supports all kinds of cutting-edge science — nicely summarizes the idea that we should be promoting more screening and improvements in that process rather than less screening, especially as recent studies demonstrate the potential for early intervention to have meaningful effects on development.

As a scientist, I understand that we need to bring a critical eye to our current knowledge base and practices. That said, I also appreciate that we have a public service to not only maintain momentum in research and practice, but to accelerate it when we are talking about developmental disorders such as autism. Discouraging screening for autism runs contrary to the mission of keeping parents as informed as possible about their children’s development, and also could inhibit the critical partnership between parents and pediatricians.

It is certainly true that the current screening for autism is far from an exact science. And I agree that any efforts to improve this process should be a priority for research and clinical practice. But the reality is that we need to serve parents today as we continue to improve our future efforts. Let’s keep moving forward.

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