For Parents: Autism Spectrum Disorder In DSM-5

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.

Autism Awareness via Shutterstock.com

Recovery From Autism: New Scientific Evidence Of Optimal Outcomes

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

The New Autism Diagnostic Criteria: What Will Be The Impact?

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.

Autism symbol via Shutterstock.com

The 7 Early Signs Of Autism Spectrum Disorder That Every Parent Should Know

Thursday, April 5th, 2012

As the estimated rate of autism spectrum disorder (ASD) continues to increase, early identification, evaluation and intervention are critical for helping youth achieve their best developmental outcomes. Simply put, “wait and see” is too conservative of a strategy for a developmental disorder that is affecting kids at an epidemic rate - and while intervention at any developmental stage will be critical, many kids don’t receive interventions as early as possible because ASD is often diagnosed “later” than it should be. So it’s critical that parents get to know the early signs, especially the early red flags, and if you observe them, make sure you get your pediatrician onboard to seek out a comprehensive developmental evaluation.

To this end, I asked Dr. Ron Steingard of the Child Mind Institute for some guidance on the most important early signs of ASD, given his distinguished record of service as a child psychiatrist and researcher. Dr. Steingard proposed that I share information offered by a terrific website  - Helpguide.org - on 7 early signs, or red flags, that should lead parents to seek out an immediate evaluation by a pediatrician and ideally clinicians with expertise in ASD. According to Helpguide.org, these 7 early signs are:

• By 6 months: No big smiles or other warm, joyful expressions.
• By 9 months: No back-and-forth sharing of sounds, smiles, or other facial expressions.
• By 12 months: Lack of response to name.
• By 12 months: No babbling or “baby talk.”
• By 12 months: No back-and-forth gestures, such as pointing, showing, reaching, or waving.
• By 16 months: No spoken words.
• By 24 months: No meaningful two-word phrases that don’t involve imitating or repeating.

Dr. Steingard concurs that any one of these warning signs require attention from a clinician. It is critical to understand that observing these red flags does not mean that a diagnosis of ASD will be made – there can many other clinical issues in play, and in some cases development may in fact just be delayed. The   goal here is to be vigilant and pursue clinical evaluation so that a plan can be made to monitor development and, if necessary, initiate the early interventions which can make a huge difference in terms of developmental progress.

If you would like to learn more details about the symptoms of ASD, and other helpful information on other potential early signs of ASD, I suggest the following:

Helpguide.com section on autism;

The Child Mind Institute’s Mental Health Guide section on Autism Spectrum Disorder;

The Centers for Disease Control and Prevention section on signs and symptoms of Autism Spectrum Disorder

Sketch of doctor and baby via Shutterstock.com 

Very Preterm Babies Show Cognitive Catch-Up In The School Years

Friday, August 19th, 2011

Very preterm babies (weighing 1250 g or less — which is less than 3 pounds) typically show cognitive delays. Some of these are due to correlated medical conditions and some may be due to more general maturational issues. That said, a study published in the August issue of Pediatrics suggests that there is significant potential for cognitive catch-up, especially during the school years.

This study used a longitudinal design to track the cognitive development of 322 very preterm children (and 41 comparison term children) at 8, 12, and 16 years of age. Although there were group differences in some indicators of cognitive development (such as phonological awareness), the very preterm children did show significant catch-up, particularly in receptive vocabulary. Over half of the very preterm children demonstrated patterns of cognitive development that were similar to the term children.

As the authors note, the mechanisms responsible for cognitive catch-up are not clear. But it is clear that the potential for catch-up should be taken seriously by parents and professionals. In particular, one of the possibilities is that early developmental stimulation can lead to meaningful developmental changes, even if the results of those changes aren’t realized until later in development.

To that end, parents who have very preterm children are encouraged to seek out ways to provide appropriate encouragement of cognitive development. Partnering with a pediatrician is a very good way to start, as is working with school personnel (even beginning in preschool). The most important take-home messages from this research is that these efforts should be started early, and that the benefits may not be realized immediately — but they will be worth the wait.