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Wednesday, March 20th, 2013
The Centers for Disease Control (CDC) have released a report that suggests 1 in 50 kids suffer from autism spectrum disorder (ASD). This is indeed the number they found in their study of over 100,000 families. But that said, it’s difficult to draw firm conclusions on this finding. Here are a few key points to consider:
1) One of the reasons that the rate of ASD has increased from the prior estimate of 1 in 88 kids is that, in this new study, data on older kids were collected. The prior estimate derived from sampling families who had an 8 year old child. The new research reached out to families with kids between 6-17 years of age. Thus one of the suggestions is that this newer estimate is higher because older kids with more mild symptoms were more likely to be represented in the sample. In this sense, the new data are more informative.
2) That said, it should be noted that the participation rate in the new study was quite low – only 23% of the families contacted participated in the survey. The authors suggest that this sample was not biased (based on statistical modeling used). However, it’s worth noting that prior estimates were based on sampling that resulted in participation rates closer to 50%. The issue – that isn’t resolved – is the extent to which families who have a child with ASD were more likely to participate – or put another way, families who don’t have kids with ASD may not have been motivated to participate. Bottom line, this participation rate is a concern.
3) The new study asked parents (or guardians) directly if they have been told (by a practitioner) that a child in the home (in the targeted age range) has ASD and also if the child currently has ASD. The authors suggest that this is an important strategy because not every child receives services and hence service-based estimates may be biased. But it’s also the case that only asking a parent/guardian these particular questions does not give a complete picture (for example, a child may have been misdiagnosed by a practitioner in either direction). So this sampling strategy is a mixed bag – there are both advantages and disadvantages to it. Of course, the gold standard would be to do a diagnostic assessment of all the kids – but something of this magnitude is typically not feasible for pragmatic reasons (it would be a huge scientific undertaking).
Taken together, we see that this study had strengths, weaknesses, and some mixed elements to it. Conducting a study of this magnitude is very difficult and as such the data should not be dismissed. But it’s tough to say if the new estimate is the “real” one or just another statistical estimate that is higher than previously thought.
We do, however, know three things for sure. First, whatever the true population estimate may be, ASD undoubtedly affects a profound number of youth. Second, it will be critical to evaluate how the new diagnostic criteria in the upcoming DSM 5 will impact these estimates – especially since there have been suggestions that at least 10% of kids currently diagnosed with ASD will no longer meet diagnostic criteria. And third, the key for any child who is diagnosed with ASD is to get intervention as early as possible, especially given some of the latest encouraging findings.
Autism via Shutterstock.com
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Wednesday, February 27th, 2013
Following a stimulating Intelligence Squared debate, we’ve been discussing genetic engineering (think of it as directly changing DNA) here at Parents.com – both in terms of using it to create a “Super Baby” and to prevent disease. As a follow-up, let’s consider the likelihood of genetic engineering being a factor in the future for a number of childhood psychiatric disorders – or more to the point, the challenges that lay ahead.
Autism Spectrum Disorder (ASD)
There would be hope that genetic engineering would be feasible in the future, as ASD is believed to be highly genetic in origin. However, the genetic basis for ASD is not clear. In fact, there may be a range of genetic etiologies. For example, some cases may be due to a rare genetic mutation – but there could be a number of mutations that can lead to ASD (not just one identified disease gene) making the idea of genetic engineering more challenging. The majority of ASD cases may reflect a complex mix of genetic and environmental influences – and the latest statistical modeling suggests that the genetic contribution to ASD may not be as strong as previously thought (and that the role of the environment may be more pronounced). For those situations, the idea of using genetic engineering is even more murky, because there may be many genes involved and they probably interact with a variety of environmental factors. All of this is not to say that genetics won’t lead to possible biological therapeutics – rather it’s to point out that the lure of genetic engineering as a solution may not be the avenue that will be pursued.
The best evidence to date suggests that ADHD is due to a mix of genetic factors along with the influence of a number of environmental factors. As discussed above, this makes the pure application of genetic engineering difficult to imagine. There may a large number of genes involved, each of which may only have a small effect on the likelihood of developing ADHD – which, simply put, would make it very difficult to know what genes to target. Again, it’s tough to predict where genetic research will go, but while it may certainly lead to improved treatments over time for ADHD, it’s tough to see the role of genetic engineering.
You’re starting to see a pattern here. Like ADHD, depression is also thought to be influenced by many genes as well as the environment. As discussed above, this constellation of risk factors does not suggest that genetic engineering will be a factor any time soon.
Conduct Disorder (CD)
This is the same deal as the case for ADHD and depression – and it may be that the environment plays an even stronger role in the etiology of CD.
The idea of genetic engineering is provocative. But the reality may be far in the future for most childhood psychiatric disorders – and in many cases it may not be the way in which genetic research gets translated into prevention and intervention.
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ADHD, ASD, autism spectrum disorder, conduct disorder, depression, DNA, Genetic Engineering, Genetics, Health, Intelligence Squared, Kids Health | Categories:
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Thursday, January 17th, 2013
There is a long history of reports of small numbers of individuals with Autism Spectrum Disorder (ASD) experiencing recovery – meaning they no longer met diagnostic criteria. While such claims have generated controversy over the years, a new study provides the best scientific evidence documenting recovery from ASD in a small number of individuals.
A team of researchers (led by Dr. Deborah Fein at the University of Connecticut) identified 34 individuals with suspected recovery who had a clear documented history of ASD, but no longer met diagnostic criteria for it. By comparing this group to two other groups – a high-functioning ASD group (44 individuals), and a typical development group without ASD (34 individuals) – the study reported these two key findings:
- The 34 potential recovery cases not only no longer met criteria for ASD, but in fact lost all symptoms of ASD
- Their social and communicative functioning was within the nonautistic range (and as a group similar to the typical development group)
The study authors suggested the phrase “optimal outcome” for these individuals to convey the idea that their overall functioning across multiple domains was in the normative range. There was a wide age range in the sample – from 8 to 21 years – and the conclusion was that some children with a diagnosis and history of autism may in fact go on to experience an optimal outcome later in development.
More reports will come in the future from this research group on this sample. In particular, they will be analyzing collected data on intervention history to see if there were commonalities in those who experienced an optimal outcome. They will also be looking at psychiatric data to examine the possibility that some with optimal outcome experience anxiety, depression, and impulsivity. Based on the data published to date, the group with optimal outcomes were reported to have milder symptoms of ASD when they were younger (but only in terms of social symptoms, not communicative or repetitive behavior symptoms), and IQ scores in the high average range. But more work will be done to see if there are clear factors which are predictive of optimal outcome.
While every child with ASD will not have an optimal outcome as defined in this study, the larger message is that the developmental trajectory of kids with ASD can be modified. We’ve seen over the past year stories about how as many as 10% of youth with ASD may “bloom” by age 8 and lose many of the debilitating symptoms. A recent study reported “a small breakthrough” for some kids with ASD (achieved with the Early Start Denver Model intervention) that resulted in “typical” brain activity activated by viewing faces. The bottom line is that whether small or big steps are made via intervention, the parents and intervention specialists who put in extraordinary time and effort will improve the lives of kids with ASD. The two key considerations continue to be early diagnosis, and early intervention. To that end, it’s critical that parents know the early signs of ASD:
The 7 Early Signs of Autism Spectrum Disorder That Every Parent Should Know
Symbol of autism awareness via Shutterstock.com
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Monday, April 30th, 2012
If your child has been diagnosed with Autism Spectrum Disorder (ASD), there is a good chance that you will be considering – or evaluating – Applied Behavioral Analysis, or ABA. This is the third of three question and answer sessions with Lauren - who was featured here last December - who offers us the combined perspective of a mother of a child with ASD and a professional who works with children with ASD. Click here to see the first post that describes ABA; click here to see the second post which gives an example of ABA.
Does it help all kids or just some?
ABA can be used with anyone with or without disabilities at any age. It is often used for kids diagnosed with ASD (see http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba). No other method I’ve researched has been shown to have the same ability to develop someone’s true potential as ABA. Goals vary from person to person and depend on age, interests, and ability. It’s important to keep your goals simple, measurable, realistic and easy to follow. In a perfect world, ABA for children with ASD needs to be practiced 40 hours a week with a therapist and continued with family and friends 24/7. Discrete trials are used primarily for students in the beginning to learn new concepts within a controlled setting. After they master the goals, then the other ABA techniques are used to generalize the new concepts in different environments and with different people.
I believe ABA principles such as positive reinforcement should be practiced all the time. I always reinforce the positive and redirect the negative behaviors with my children or my students. It’s important to remain even toned and only show lots of emotion when a positive behavior is exhibited – try not to yell or get upset at a negative behavior. This could incite the child and even make them want you to do it again. Negative attention is still providing attention and for a child wanting attention. Also, what could be acquired quickly by one student may take a long time with another student. Always think what’s best for the child’s ability.
Is it hard to do?
The ABA Therapist should make the objectives very clear and manageable. If you don’t follow the directions exactly as written, then the student or teacher may not understand the target behavior. If you are using ABA to change behavior in a more natural setting, it’s important to remain consistent with the therapist’s directions. In that sense it is very demanding and frustrating since a behavior that you are trying to change may being reinforced by another family member. Also, be aware of the student’s likes and interests. They are constantly changing. So, using a reinforcer that works with one person won’t always work on another.
Are there other approaches to consider?
When my son was first diagnosed, I thought he should be put with lots of typical children so he could learn by imitating appropriate behavior. However, children with ASD are lacking prerequisite skills to know how to learn. If you can place a child with ASD in a typical classroom with an aide, you cannot teach the child the skills needed to sit, attend, and understand his environment. If you place them in an individualized program where the ABA therapist teaches appropriate behaviors prior to age of 5, the student will hopefully have developed the prerequisite skills to be able to join a typical classroom one day. Sure, there are lots of other approaches out there, but ABA is a scientifically proven method that works with kids diagnosed with ASD and can have a substantial impact on their development.
Symbol of autism awareness via Shutterstock.com
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Behavior, Health, Intervention, Parenting, Questions, Red-Hot Parenting
Monday, April 30th, 2012
If your child has been diagnosed with Autism Spectrum Disorder (ASD), there is a good chance that you will be considering – or evaluating – Applied Behavioral Analysis, or ABA. This is the second of three question and answer sessions with Lauren - who was featured here last December - who offers us the combined perspective of a mother of a child with ASD and a professional who works with children with ASD. Click here to read Lauren’s explanation of what ABA is and how it works.
Can you give a brief example of some of the behaviors that you can change using ABA?
Here is an example that doesn’t use discrete trial teachings, instead it utilizes a social story, visual countdown, schedule, positive reinforcement, and functional communication training. Jane, 4 years old, loves to play with her sister Alexa, 6 years old, but Alexa has homework to do at her desk. Jane starts crying because she wants to play with her sister. Alexa tells her to stop crying but Jane doesn’t, instead she cries louder. Alexa stops doing her homework and plays with Jane. This is a behavior. Behaviors can be changed!
To figure out the behavior as in the example above, one needs to:
1. Describe what the behavior looks like – in ABA this is done using the concepts of antecedent, behavior, and consequence. The antecedent is – Alexa sits down to do homework at the desk, Jane says play with me, Alexa says she has homework to do. The behavior is – crying. The consequence is – Alexa stops her homework and goes to play with Jane.
2. Determine what is the function of the behavior (crying). In this case, it is to get attention.
3. Explore what did Alexa do before and after and what should she have done differently? Alexa did not give Jane enough notice that homework comes first, then playtime. Jane didn’t want to wait.
An ABA therapist would use the definition of the behavior – crying – and track how many times that behavior is being seen and all the different contexts in which it can be observed.
An example using ABA to provide an appropriate replacement for Jane’s “crying” due to wanting attention would be to write a quick social story, using the Berenstain Bears as a prototype. In the story, there will be an explanation that sometimes old sister Alexa has homework to do. While Alexa does her homework, list some activities that Jane can do to keep herself entertained. These activities need to be motivating and something she can do alone. Also, in the story, it’s important to mention how to replace the crying. For example, if during playtime, she has a hard time waiting she can use her words and say,”waiting is hard” or “how much longer”? Also, Jane can have a visual schedule written - 1. homework 2. play with Alexa – with a visual countdown that Jane can cross out as the time goes by. The schedule provides Jane a sense of control and understanding that there is an end to the waiting. Throughout the countdown, a smaller positive reinforcer such as a sticker can be given to Jane to maintain her appropriate behavior. In addition, verbal reinforcers like “I like how you are waiting for me, 4 more minutes, then I will play with you” can be used as well.
By providing more appropriate proactive strategies for Jane, with practice and patience, the behavior will change!
Symbol of autism awareness via Shutterstock.com
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