Wednesday, May 22nd, 2013
The DSM-5 has made major changes in the way that Autism Spectrum Disorder (ASD) is diagnosed. Here are 5 practical tips for parents based on these changes:
1) Understand the implications of eliminating Asperger’s Disorder. For most children, this change should not have much impact in the diagnostic process. It will impact some children who are higher functioning and who would have, in the past, been diagnosed with Asperger’s Disorder. The DSM-5 includes severity criteria which were designed in part to incorporate these types of kids into the new diagnostic framework. That said, many in the field think that some kids may no longer receive a diagnosis if their symptoms are less severe. Some of the initial studies demonstrate that some kids who would have been diagnosed in the prior DSM will not receive a diagnosis using DSM-5. As a parent, be ready to have this discussion with a clinical provider – and be ready to ask questions like “If the old system was in place, would my child have been diagnosed as Asperger’s?” You may need to advocate more strongly than before for your child. Focus on the need for services that could make a difference for your child’s development and collaborate with your practitioners to make sure your child has every opportunity to benefit from intervention.
2) Understand the implications of eliminating other alternate diagnoses. DSM-5 does away with other diagnostic options like Pervasive Developmental Disorder Not Otherwise Specified. The impact may be felt for kids who have many symptoms of ASD but not necessarily the exact profile. There may be no alternative diagnosis despite the fact that they have many developmental issues that need attention. Make sure your practitioners seem savvy about DSM-V and know how to make sure a kid with this kind of mixed presentation doesn’t get lost in the transition to the new diagnostic framework. Have that discussion with them and be satisfied – or seek out another opinion.
3) Beware of the severity criteria and insurance. Many clinicians have told me that they are concerned that insurers may balk at covering services for some children who are rated to show less severe symptoms. We don’t know this yet. Make sure your clinician is on top of these issues and that the team is ready to take on battles if necessary. You want to have confidence in your providers because this is all new and it is not clear how it will all unfold.
4) Remain vigilant about the early signs of autism. Just because the way ASD is diagnosed has changed in DSM-5, that doesn’t mean the warning signs have changed. They remain the same and you should be aware of the 7 early signs of autism.
5) Remember that early intervention still matters. If you suspect that your child may have ASD, it is better to get started as early as possible with the evaluation process – and if necessary intervention. Intervention helps any child, no matter what the severity, and early intervention is, right now, the best we have to offer kids with ASD. The fact that we have switched to DSM-5 does not alter the importance of early intervention – though, again, you need to be aware that you might need to fight harder to get intervention. It’s a fight worth taking on.
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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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