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

DSM-5: Why (and What) Parents Should Know About It

Tuesday, May 21st, 2013

As a parent, you may be wondering why such a fuss is being made about the release of the DSM-5 (the 5th edition of the Diagnostic and Statistical Manual of the American Psychiatric Association). Here is a brief overview of why it may be (0r become) relevant to you – and why it’s important to learn about the issues that are being debated.

Many Kids Will Experience A Mental Disorder

The primary reason parents need to know about DSM-5 is that many psychiatric disorders that originate in childhood are not uncommon. Consider some rough numbers:

• Around 1 in 50 kids are being diagnosed with Autism Spectrum Disorder
• Around 1 in 10 kids are being diagnosed with Attention Deficit Hyperactivity Disorder
• Around 1 in 10 kids are being diagnosed with Conduct Disorder
• Around 1 in 10 kids are being diagnosed  with an Anxiety Disorder
• Around 1 in 10 kids are being diagnosed with a Mood Disorder
• Around 1 in 2 teens have reported meeting diagnostic criteria for at least 1 disorder in their lifetime

Having a good look at these numbers means that lots of parents will be faced at some point in time with the possibility of having their child evaluated for a disorder – and will need to consider treatment options. That’s where the DSM-5 comes in.

DSM-5 Is The Primary Guide For Clinical Diagnosis

The DSM-5 is the handbook used by a broad range of health care professionals who evaluate individuals (youth and adults) for potential psychiatric disorders. It’s an authoritative guide that reflects a consensus statement on the best way to categorize disorders along with the specific symptoms and rules to be used to make a diagnosis. The intention is to make it reflect current clinical thinking that is supported by research. It is not perfect, it reflects a particular point of view by those charged with generating the guidelines, and there is much debate (and criticism) of the diagnostic approach taken by the DSM-5.

All that said, the fact remains that the DSM-5 will be used if you bring your child to a health care professional for evaluation. The clinician will consider lots of information during this process – the DSM-5 does not dictate what information they use and how they get it. It’s intended to serve as a guide to the endpoint of making (or not making) a diagnosis. And it serves as the template for a health care provider to request reimbursement from insurance companies to support treatment.

Why All The Controversy Now?

The DSM-5 is a revision of the prior version which was released in 2000. As such, it includes a number of changes – some of which are minor, some of which are major. Beyond the more general discussions about what’s “normal” and what isn’t, the key things that parents need to know are the practical implications of the changes. As a parent, you should be aware of the changes to disorders that are especially relevant for youth. Here’s a brief overview:

Autism Spectrum Disorder: Major changes have occurred. In the prior version, a spectrum of disorders were available to clinicians, reflecting important variations in symptom profile. Four disorders were listed: Autistic Disorder, Asperger’s Disorder, Childhood Disintegration Disorder, and Pervasive Developmental Disorder Not Otherwise Specified. The key change is that there is now just one diagnosis made of Autism Spectrum Disorder (ASD) – and the other diagnostic categories will no longer be used. Proponents of this change suggest that it is more accurate by defining the core features of ASD that were common to all of the disorders in the spectrum and allowing for differences in severity level under one diagnostic umbrella. Critics suggest that a number of youth who require diagnosis and treatment will not be diagnosed – and that the reliance on severity levels may make it harder for kids with more mild symptoms to receive treatments they need. There’s no answer to these issues yet – they will unfold over time as data are collected. But if your child is evaluated for ASD, it’s in your best interests to be up on the debates and have informed discussions with your clinician in order to make sure you are advocating for the best care for your child.

Attention Deficit Hyperactivity Disorder (ADHD): Minor changes have occurred. In the past, there had to be evidence that a child showed symptoms of ADHD before age 7. That has been extended to age 12 in the DSM-5. There is also more attention to making diagnoses in adults more manageable. All of these changes mean that if you have an older child who has never been diagnosed with ADHD, they might now be evaluated differently. It’s also important to know what isn’t in the DSM-5 – a lower limit on age. That is, there are no guidelines in terms of how young a child may be when making a diagnosis. This is relevant as there have been (controversial) suggestions that kids as young as 4 years of age could be diagnosed (and many in fact have). Know that DSM-5 does not offer guidance here and you will need to make up your own mind if this makes sense for your child –  hopefully with the appropriate guidance of a well-trained clinician. Overall, the worry here is that kids of all ages may be overdiagnosed.

Conduct Disorder (CD): Minor changes have occurred. Conduct disorder represents a persistent pattern of rule breaking behavior and behavior that violates the rights of others. It can be diagnosed in young children as well as teens. The primary change has been to incorporate symptoms indicating a callous and unemotional interpersonal style. The thinking here is kids with this profile may be especially prone to experience problems in the future – and require more intensive management and treatment. Be aware that these symptoms will receive more attention now in the diagnostic process.

Disruptive Mood Dysregulation Disorder (DMDD): This diagnosis reflects a major change – it is a new diagnostic category. The idea was to provide a diagnostic option for kids who show persistent irritability and extreme emotional and behavioral outbursts. The rationale for developing the DMDD criteria was to make sure kids who show these symptoms do not get mislabeled as having pediatric bipolar disorder – but still may qualify for treatment. The controversy is that many feel that there is not sufficient evidence to support this new diagnosis – and in the worst case scenario kids who do not have psychiatric problems will be diagnosed with a disorder and get treatment that they don’t need.

Over the next few days, I will publish blog posts that consider each of these four disorders in greater detail, and provide some guidance for parents to help sort through these complex issues. There are no straightforward answers to be found – rather parents need to know about DSM-5 so they can be prepared to navigate the best decisions for their child.

Why Playfulness Is More Important Than Play

Thursday, May 9th, 2013

We all know that it is critical for kids of all ages to play. And we know that play can take many forms. But there’s a deeper idea about the importance for kids to learn how to be playful – and how that spirit should permeate their development.

Such is the advice given by Steve Gross, Executive Director – and Chief Playmaker – of The Life is good Playmakers, the action arm of The Life is good Kids Foundation, a nonprofit organization established by Life is good to raise money to help kids in need. Life is good is a company with a positive purpose and is committed to spreading the power of optimism and donating 10% of its net profits to helping kids in need through The Life is good Kids Foundation.

Steve Gross, Chief Playmaker, Life is good Playmakers

The Life is good Kids Foundation directly funds the Life is good Playmakers program. The Life is good Playmakers provide training and support to childcare professionals, who use these tools to ensure that children grow up feeling safe, loved and joyful.

Steve certainly champions the essential nature of play in a kid’s life  (“Children need food and water to survive, but to truly live, they’ve gotta play”). But he points out that we often get the message that play happens in a designated time and space and includes specific activities – which means much of the time we don’t harness the power of playfulness in the majority of moments in a kid’s everyday life. He suggests that we want kids to develop the trait of playfulness as a style they bring to everything they do. Steve defines playfulness as “the motivation to freely and joyfully engage with, connect with, and explore the surrounding world.” It’s an attitude, and a style, that provides a cognitive and emotional platform for kids to embrace themselves and fuel for them to bring themselves to the world in a positive way.

Four ingredients make up Steve’s recipe for playfulness:

AFFECT: Kids need to experience joyfulness in their everyday moments – not just the time that’s “reserved” for play. Most of the opportunities for “play” happen in real time. Steve gives a wonderful example of how getting a kid ready to go to play is an ideal time to promote joyfulness – and also a moment that often turns in the other direction for parents. Rather than getting stressed about making sure a toddler has their shoes on and their coat ready, how about treating THAT time as the time to get silly and experience joy and anticipation. It may be even more fun than when you actually get outside to “play.” It’s these little moments that define the affective climate for a child – and bringing anticipation, lightness, joy, and overt silliness to the everyday tasks infuses a kid with a playful spirit that makes most of the day feel like play rather than the other way around.

SOCIAL CONNECTION: Interacting with people is play. It’s as important – if not more important – that your kid is looking at you and seeing you laugh and smile and express joy when you are playing than being engaged in the play itself. Think about all the moments you have to simply talk to your kid – especially babies and toddlers. Don’t underestimate how fun and rewarding (at a very deep level) it is for your kid to explore your face and your emotions and your tone of voice. It’s a constant stream of engaging content for them that they could never find in a toy or a device. So Steve proposes that treating the everyday interaction moments as opportunities to cultivate joyfulness helps a kid discover the power of social connection.

INTERNAL CONTROL: Steve suggests that kids need to feel like they are in control of themselves, and that the world is a safe place for them. They need to feel like they can explore without fear of bad consequences. Sure, you need to keep your kid safe. But a constant stream of “No No No” communicates two things to a little one: the world isn’t safe to explore, and your little one is not competent enough to explore it. One of the tricks of the trade is to practice redirection: rather than saying “Don’t do that!” focus on saying, “Do this instead!” Cultivate the curiosity and direct it in a safe way. That way, you are following Steve’s advice by showing your kid how to explore the world in a safe manner and you are making them feel like they can – and should – follow their instincts to do that.

ACTIVE ENGAGEMENT: One of the wonderful deliverables of playfulness is the ability to be focused and get in the flow of an activity – whatever that activity happens to be. Steve’s conception of active engagement is a core part of what we think of as creativity. Kids need to get lost in the moment, block out everything else, and just follow where the experience takes them. As Steve points out, this doesn’t just happen during what we think of as “play” (although those are of course opportune times to witness this). For younger kids, it can be looking at rocks, following a bug, watching mom put on lipstick, or playing with a zipper on a pocketbook. For older kids, “play” can involve math, English, science, music – whatever turns them on. This all goes to Steve’s overriding message – it’s all about kids bringing a sense of playfulness to everything they do.

In the busy world we live in, we often think it is difficult to find time to play with our kids and give our kids opportunities to play. But if we embrace the philosophy of Steve Gross – Executive Director AND Chief Playmaker of the Life is good Playmakers– we see that we actually have more than enough time to infuse our kids with a sense of playfulness, and a trait that will serve them well for their entire lifetime.

Steve in Haiti

Images courtesy of Life is good

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

Autism Awareness via Shutterstock.com

4 New Things We’ve Learned About Autism Spectrum Disorder In The Last 2 Years

Friday, April 19th, 2013

As part of Autism Awareness Month, I’ve been reflecting on some of the new things we have learned about Autism Spectrum Disorder (ASD) over the past few years. Four findings stand out for me: 

It’s Not Just DNA: The landmark twin study published in 2011 suggests that while genes are important, environmental factors that increase likelihood of ASD are a key etiological influence as well. This finding is a critical one as it is the first twin study to show such a strong environmental effect after controlling for the role of genetics. It gives new impetus to examining a range of environmental influences in addition to searching for genes that increase risk for ASD.

Recovery From ASD Is Possible: While it’s been a controversial topic in the scientific literature, a recent study provides solid evidence that some kids can “outgrow” ASD. What we still don’t know is why that is the case. But this paper does stand out as important documentation that the phenomena of recovery is real.

Psychosocial Interventions Can Change Brain Functioning: While complete recovery from ASD is still rare, the positive effects of early intervention are not. New research published in 2012 provides dramatic evidence that some interventions – such as the Early Start Denver Model – may not just improve behavior, but also “normalize” brain functioning in response to social stimuli. This is a dramatic result because it demonstrates there is ‘plasticity’ in the brain that can be shaped by intensive intervention. It shows that we should give more weight to supporting psychosocial interventions, in part because they can effect biological development.

ASD Is More Common Than Ever: A recent paper reported that 1 in 50 kids have ASD. While it is difficult to generate a premise statistical estimate of the frequency of ASD,  it is clear that each new attempt reports that the frequency is higher than previously reported. This trend may, of course, reverse with the publication of the new DSM 5 criteria for ASD. That said, the newest estimates bring attention to how common ASD is in the population – and how many kids need appropriate diagnosis and intervention.

Human Brain Research via Shutterstock.com