Posts Tagged ‘
autism spectrum disorder ’
Thursday, October 4th, 2012
The impact of the newly proposed diagnostic criteria for autism have been debated this year and the conversation continues with a new study published online in the American Journal of Psychiatry (you can read it here). The key issue has been the extent to which the new criteria will lead to fewer diagnoses of autism. Here’s a summary of where things stand right now.
1) The new criteria lumps all disorders along the autism spectrum together under one diagnosis. This means, for example, that separate criteria for Asperger’s Syndrome would no longer be in place. Whenever diagnostic lumping takes place, the criteria become less specific, in order to take in a large range of symptoms. A result of this is that clinicians making diagnoses have to use even more professional insight and discretion to determine if a diagnosis is warranted because the criteria are more general than before.
2) To account for the wide range of symptom expression that can be observed within this broad autism spectrum, there will be a severity scale, ranging from mild to severe.
3) A key concern has been that the new diagnostic criteria will result in fewer diagnoses of autism in the future. Some have claimed that this effect will be profound. The study cited above suggests that less than 10% of current cases would no longer meet diagnostic criteria for autism.
Now this is where the fuzziness in the debate comes into play. Whenever a child is not diagnosed with a condition, then the availability of services gets reduced. Do these 10% of kids still need services? Will they get a diagnosis that will permit access to services? This is really the crux of the question. Furthermore, there are suggestions that this study was a “best-case scenario” because it focused on more clear-cut cases and used expert clinicians with lots of experience (see, for example, the New York Times report on this). The implication is that once the new diagnostic criteria are used out in the real world, with a range of clinicians in terms of experience, the number of cases that will not be diagnosed may be higher than the 10% reported in the study.
Earlier this year, I asked an experienced clinician – Dr. Gil Tippy – to offer his take on the matter. He suggested that the rates of autism will not be severely affected if experienced clinicians are doing the assessments. His greatest concern was that the use of the new severity criteria would substantially decrease the number of kids who could receive services for their condition. His argument was that insurance companies could deny coverage to those who were given a “lower” severity rating of mild impairment – even though that “mild impairment” requires intervention. You can read the entire blog post here if you are interested in the details.
So I think there are 2 take-home messages right now:
1) The rate of diagnosis will go down – but it’s not clear to what degree.
2) The impact of the severity criteria on the ability of families to secure coverage needs to be considered in more detail, as this could result in impediments to secure treatment.
If you read Dr. Tippy’s suggestions noted above, he offers advice on how to advocate to ensure that kids are not denied services in the future. This is especially important as early screening and early intervention continue to be the most effective strategies for accelerating the development of youth diagnosed with autism. To that end, it’s important that all parents know the early signs of autism that would indicate the need for early screening – if you haven’t seen it before, here is a prior blog post that lists 7 key early signs that should never be ignored.
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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.
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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 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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Monday, April 9th, 2012
You may have seen or heard this morning about a new study that found links between maternal obesity and risk for autism. Here’s a breakdown on the study, the findings, and the take-home message.
What Did This Study Do? The research – published in Pediatrics – explored links between maternal metabolic conditions – specifically diabetes, hypertension, and obesity – and neurodevelopmental disorders in early childhood – particularly autism spectrum disorders (ASD) and developmental delays (DD). The sample was informative – it is a population-based sample in California that is participating in a very large investigation. That said, it’s important to keep in mind that maternal history of diabetes and hypertension during pregnancy, and obesity prior to pregnancy, were gathered retrospectively via a phone interview with the mother when kids were between 24 and 60 months of age, and also from medical records when available (which they were for over half the sample). I highlight this to emphasize that this is far from a definitive study - not that it’s a bad study, just that it is more like the first word, rather than the last word, on this topic. Do note that the available data suggested that moms could reliably report retrospectively (when they compared their responses to available medical records) – but still, this is not as informative as a prospective study. Moms were selected based on the profiles of 3 types of youth – those with ASD, those with DD, and a general population (GP) control group with neither condition. The researchers then set out to examine if there were links between the maternal metabolic conditions and these three groups of kids. So keep in mind here that this is a statistical test of association, not a more controlled experimental test that can, if you will, “prove” the associations. These kinds of studies are critical first steps to determine if future research is warranted – and not the last steps that convince the scientific community that there is a causative process at play.
What Did They Find? Keeping all of the above in mind (you have to in order to make sense of the results), the study did find a statistical link between a mother’s report of having any of the metabolic conditions and the odds of having a child diagnosed with ASD and DD. It was a moderate statistical finding (meaning statistically significant but clearly not the only factor that contributes risk for ASD and DD). To give you a sense of the data, here are the percentages of mothers with a metabolic condition, broken down by youth diagnosis:
ASD: 28.6% of the mothers
DD: 34.9% of the mothers
GP: 19.4% of the mothers
So you can see how this is a moderate statistical link – for example: 1) the majority of moms of kids with ASD did not have any metabolic conditions, 2) almost 20% of the moms of kids from the general population control group did have a metabolic condition; and 3) the finding comes from the somewhat elevated rates in the ASD and DD groups compared to the GP group. More fine-grained analyses showed that obesity in particular was associated with ASD (after controlling for other factors) – but that diabetes had an effect on a number of cognitive and social outcomes.
What’s The Take-Home Message? There are two messages from my point of view. First, from the perspective of science, the study authors devote most of their attention in their discussion of the results on the biological mechanisms by which maternal diabetes – not maternal obesity – may impact brain development in babies. This is an important avenue for future research and a key contribution from the study. Second, from the perspective of being a prospective parent, the real take-home is that management of maternal metabolic conditions is not only critically important for a number of health outcomes, but also for promoting brain development in the early years of life. Rather than focusing on metabolic conditions as “causes” of disorders, it’s probably better advised to consider them as modifiable influences on development. Maternal obesity is important in this sense because it is one of many factors associated with diabetes – though keep in mind that gestational diabetes can of course occur without obesity. Diabetes – whether in place prior to pregnancy or occurring during pregnancy – is important because it might have biological influences on brain development. So this study just reinforces the bigger message that I hope everyone is aware of – that pregnant women should get vigilant care for potential or existing metabolic conditions during pregnancy, especially diabetes. It’s critical for the well-being of both mom and baby.
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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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