Transition to DSM-5 for Autism

With prevalence of as much as 1 in 88 according to the Centers for Disease Control and Prevention, you are no doubt caring for many children with autism. It can be an intimidating task when families, anxious to assure that their children get the best care, seek your opinion and support on the changes brought by DSM-5.

The DSM classification system aims to provide mental health diagnostic criteria with ever improving validity and reliability. Most changes in the DSM-5 published in May 2013 were made based on research and field trials. For autism, DSM-5 consolidates the four separate disorders of DSM-IV into a single condition with different levels of symptom severity in two core domains. Thus, the prior diagnoses falling under pervasive developmental disorders of autistic disorder, Asperger’s syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified are now all called autism spectrum disorder. Rett syndrome has been pulled out because its specific genetic cause is now known.

This means diagnoses with which you are familiar and that are being carried by your existing patients are gone. Both families and organizations are on edge, shaken by having terms they had come to accept, often with great difficulty, are gone. They are even more concerned that the changes in classification will alter their child’s eligibility for services.

So what are the new DSM-5 criteria for autism spectrum disorder (ASD)? There are now two rather than three core features for a child to have an ASD diagnosis: 1) deficits in social communication and interaction; and 2) presence of restricted, repetitive interests or behaviors. The required deficits must be persistent and may be present now or by history.

The social communication and interaction symptoms may include such things as the failure to be interested in interaction with peers, poor pragmatic language, and poor eye contact that you already know.

The second criterion, restricted, repetitive patterns of behavior interests or activities, requires at least two of the following:

• Stereotyped or repetitive motor movements, use of objects, or speech. Thus echolalia, mimicking movie scripts, twirling objects, or flapping would count.

• Insistence on sameness, inflexible routines, or ritualized behavior. This includes the rigidity or upset about change seen in Asperger.

• Highly restricted, fixed interests abnormal in intensity or focus. This captures obsessions with train schedules, fans, etc.

• Hyper- or hyporeactivity to sensory or unusual interest in sensory aspects. This criterion was only a mention in DSM-IV, rather than a potential diagnostic element. It includes the problems with food textures, inability to tolerate the movie soundtrack or oblivion to pain sometimes observed.

Significant impairment in functioning is still required, but it is now to be judged by the amount of support required for the child to cope with daily living. Severity for each of the two areas (social communication and restricted, repetitive behaviors) should be separately described using levels:

• Level 3: Requiring very substantial support.

• Level 2: Requiring substantial support

• Level 1: Requiring support.

There is table in the DSM-5 that more fully explains the levels and gives examples.

Those children about whom no one was complaining because of careful family accommodation now qualify, since onset before age 3 years is no longer required; only at an "early age."

Because autism often appears in children with intellectual disability or global developmental delay, these diagnoses take precedence for diagnosis unless social communication is below that expected for the child’s general developmental level. In that case, diagnoses of both intellectual disability and ASD apply.

While other features associated with autism are acknowledged in the description of ASD, they no longer drive the diagnosis. Associated factors should be described as part of the diagnoses, such as association with a known medical (attention-deficit/hyperactivity disorder) or genetic condition (Fragile X) or environmental factor; with or without intellectual disability; with or without language impairment; and any other neurodevelopmental, mental, or behavioral disorder. Any catatonia should be noted.

The change with possibly the greatest and most uncertain impact is the pull-out of a new disorder: social communication disorder. This is to be used for children with social language deficits if the criterion for repetitive and restricted behaviors is not met. These, usually higher-functioning children are the most likely to be removed from ASD diagnosis by the DSM-5 revisions. There are risks in this move as criteria are quite strict for the communication problems but overlap language disorder. The assessment tools needed for determining these criteria are not well developed and speech-language pathologists may not be well prepared to assess the repetitive behaviors to rule in or rule out ASD. Services for this diagnosis may be restricted to the speech-language component instead of including the social skills deficits and more intense treatment now provided for children classified as ASD.

As for changed diagnoses resulting in changed services, there is some good news: There may not be any service changes at all for your current patients. The DSM-5 Neurodevelopmental Disorders Work Group states that these changes will not affect children with a current diagnosis; no children will lose their current diagnoses on the spectrum. For services based on diagnosis, some children may not qualify in the future, but when services are based on severity children will likely qualify based on the new levels.

But what about the children yet to be diagnosed? One goal for reorganization in the DSM-5 was to improve specificity, but sensitivity may suffer, particularly for children previously called PDD NOS. Huerta et al. studied this using a cross classification of children already diagnosed to see which ones might be excluded under DSM-5 (Am. J. Psychiatry 2012;169:1056-64). She found that the DSM-5 criteria identified 91% of children with clinical DSM-IV PDD diagnoses, perhaps the most vulnerable to exclusion. The sensitivity of the DSM-5 criteria was high, even in girls and children younger than 4 years. This would be good news for retaining services.

But other studies on previously diagnosed cases do not agree. These studies using various existing samples predict that least 12% and potentially more than 40% of children who would have been classified as ASD under DSM-IV will not be under DSM-5, especially the most high functioning. Failure to meet criteria in the social communication domain was the most common reason for exclusion (39%) in one study. In addition, ASD prevalence is predicted to drop from 11.3% to 10.0% using the DSM-5 criteria (JAMA Psychiatry 2014 [doi: 10.1001/jamapsychiatry.2013.3893]). DSM-5 changes also will make it difficult for ongoing longitudinal research studies to compare with previous data.

Because the DSM-5 diagnosis of ASD is here to stay, what can you do to ease the transition? First, be able to explain the changes as described here. Then, implement or look for all aspects of the descriptors about comorbidity and severity when you are monitoring services being provided or advocating for more. Take special care that social communication disorder is diagnosed correctly and that both language and social skills are addressed. And encourage parents to join the national registries such as Autism Speaks and the Autism Speaks Autism Treatment Network and the Interactive Autism Network, which will help current and future research as DSM-5 efficacy is examined and even more changes made.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She has no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to Frontline Medical Communications. E-mail her at [email protected].

With prevalence of as much as 1 in 88 according to the Centers for Disease Control and Prevention, you are no doubt caring for many children with autism. It can be an intimidating task when families, anxious to assure that their children get the best care, seek your opinion and support on the changes brought by DSM-5.

The DSM classification system aims to provide mental health diagnostic criteria with ever improving validity and reliability. Most changes in the DSM-5 published in May 2013 were made based on research and field trials. For autism, DSM-5 consolidates the four separate disorders of DSM-IV into a single condition with different levels of symptom severity in two core domains. Thus, the prior diagnoses falling under pervasive developmental disorders of autistic disorder, Asperger’s syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified are now all called autism spectrum disorder. Rett syndrome has been pulled out because its specific genetic cause is now known.

This means diagnoses with which you are familiar and that are being carried by your existing patients are gone. Both families and organizations are on edge, shaken by having terms they had come to accept, often with great difficulty, are gone. They are even more concerned that the changes in classification will alter their child’s eligibility for services.

So what are the new DSM-5 criteria for autism spectrum disorder (ASD)? There are now two rather than three core features for a child to have an ASD diagnosis: 1) deficits in social communication and interaction; and 2) presence of restricted, repetitive interests or behaviors. The required deficits must be persistent and may be present now or by history.

The social communication and interaction symptoms may include such things as the failure to be interested in interaction with peers, poor pragmatic language, and poor eye contact that you already know.

The second criterion, restricted, repetitive patterns of behavior interests or activities, requires at least two of the following:

• Stereotyped or repetitive motor movements, use of objects, or speech. Thus echolalia, mimicking movie scripts, twirling objects, or flapping would count.

• Insistence on sameness, inflexible routines, or ritualized behavior. This includes the rigidity or upset about change seen in Asperger.

• Highly restricted, fixed interests abnormal in intensity or focus. This captures obsessions with train schedules, fans, etc.

• Hyper- or hyporeactivity to sensory or unusual interest in sensory aspects. This criterion was only a mention in DSM-IV, rather than a potential diagnostic element. It includes the problems with food textures, inability to tolerate the movie soundtrack or oblivion to pain sometimes observed.

Significant impairment in functioning is still required, but it is now to be judged by the amount of support required for the child to cope with daily living. Severity for each of the two areas (social communication and restricted, repetitive behaviors) should be separately described using levels:

• Level 3: Requiring very substantial support.

• Level 2: Requiring substantial support

• Level 1: Requiring support.

There is table in the DSM-5 that more fully explains the levels and gives examples.

Those children about whom no one was complaining because of careful family accommodation now qualify, since onset before age 3 years is no longer required; only at an "early age."

Because autism often appears in children with intellectual disability or global developmental delay, these diagnoses take precedence for diagnosis unless social communication is below that expected for the child’s general developmental level. In that case, diagnoses of both intellectual disability and ASD apply.

While other features associated with autism are acknowledged in the description of ASD, they no longer drive the diagnosis. Associated factors should be described as part of the diagnoses, such as association with a known medical (attention-deficit/hyperactivity disorder) or genetic condition (Fragile X) or environmental factor; with or without intellectual disability; with or without language impairment; and any other neurodevelopmental, mental, or behavioral disorder. Any catatonia should be noted.

The change with possibly the greatest and most uncertain impact is the pull-out of a new disorder: social communication disorder. This is to be used for children with social language deficits if the criterion for repetitive and restricted behaviors is not met. These, usually higher-functioning children are the most likely to be removed from ASD diagnosis by the DSM-5 revisions. There are risks in this move as criteria are quite strict for the communication problems but overlap language disorder. The assessment tools needed for determining these criteria are not well developed and speech-language pathologists may not be well prepared to assess the repetitive behaviors to rule in or rule out ASD. Services for this diagnosis may be restricted to the speech-language component instead of including the social skills deficits and more intense treatment now provided for children classified as ASD.

As for changed diagnoses resulting in changed services, there is some good news: There may not be any service changes at all for your current patients. The DSM-5 Neurodevelopmental Disorders Work Group states that these changes will not affect children with a current diagnosis; no children will lose their current diagnoses on the spectrum. For services based on diagnosis, some children may not qualify in the future, but when services are based on severity children will likely qualify based on the new levels.

But what about the children yet to be diagnosed? One goal for reorganization in the DSM-5 was to improve specificity, but sensitivity may suffer, particularly for children previously called PDD NOS. Huerta et al. studied this using a cross classification of children already diagnosed to see which ones might be excluded under DSM-5 (Am. J. Psychiatry 2012;169:1056-64). She found that the DSM-5 criteria identified 91% of children with clinical DSM-IV PDD diagnoses, perhaps the most vulnerable to exclusion. The sensitivity of the DSM-5 criteria was high, even in girls and children younger than 4 years. This would be good news for retaining services.

But other studies on previously diagnosed cases do not agree. These studies using various existing samples predict that least 12% and potentially more than 40% of children who would have been classified as ASD under DSM-IV will not be under DSM-5, especially the most high functioning. Failure to meet criteria in the social communication domain was the most common reason for exclusion (39%) in one study. In addition, ASD prevalence is predicted to drop from 11.3% to 10.0% using the DSM-5 criteria (JAMA Psychiatry 2014 [doi: 10.1001/jamapsychiatry.2013.3893]). DSM-5 changes also will make it difficult for ongoing longitudinal research studies to compare with previous data.

Because the DSM-5 diagnosis of ASD is here to stay, what can you do to ease the transition? First, be able to explain the changes as described here. Then, implement or look for all aspects of the descriptors about comorbidity and severity when you are monitoring services being provided or advocating for more. Take special care that social communication disorder is diagnosed correctly and that both language and social skills are addressed. And encourage parents to join the national registries such as Autism Speaks and the Autism Speaks Autism Treatment Network and the Interactive Autism Network, which will help current and future research as DSM-5 efficacy is examined and even more changes made.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She has no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to Frontline Medical Communications. E-mail her at [email protected].

With prevalence of as much as 1 in 88 according to the Centers for Disease Control and Prevention, you are no doubt caring for many children with autism. It can be an intimidating task when families, anxious to assure that their children get the best care, seek your opinion and support on the changes brought by DSM-5.

The DSM classification system aims to provide mental health diagnostic criteria with ever improving validity and reliability. Most changes in the DSM-5 published in May 2013 were made based on research and field trials. For autism, DSM-5 consolidates the four separate disorders of DSM-IV into a single condition with different levels of symptom severity in two core domains. Thus, the prior diagnoses falling under pervasive developmental disorders of autistic disorder, Asperger’s syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified are now all called autism spectrum disorder. Rett syndrome has been pulled out because its specific genetic cause is now known.

This means diagnoses with which you are familiar and that are being carried by your existing patients are gone. Both families and organizations are on edge, shaken by having terms they had come to accept, often with great difficulty, are gone. They are even more concerned that the changes in classification will alter their child’s eligibility for services.

So what are the new DSM-5 criteria for autism spectrum disorder (ASD)? There are now two rather than three core features for a child to have an ASD diagnosis: 1) deficits in social communication and interaction; and 2) presence of restricted, repetitive interests or behaviors. The required deficits must be persistent and may be present now or by history.

The social communication and interaction symptoms may include such things as the failure to be interested in interaction with peers, poor pragmatic language, and poor eye contact that you already know.

The second criterion, restricted, repetitive patterns of behavior interests or activities, requires at least two of the following:

• Stereotyped or repetitive motor movements, use of objects, or speech. Thus echolalia, mimicking movie scripts, twirling objects, or flapping would count.

• Insistence on sameness, inflexible routines, or ritualized behavior. This includes the rigidity or upset about change seen in Asperger.

• Highly restricted, fixed interests abnormal in intensity or focus. This captures obsessions with train schedules, fans, etc.

• Hyper- or hyporeactivity to sensory or unusual interest in sensory aspects. This criterion was only a mention in DSM-IV, rather than a potential diagnostic element. It includes the problems with food textures, inability to tolerate the movie soundtrack or oblivion to pain sometimes observed.

Significant impairment in functioning is still required, but it is now to be judged by the amount of support required for the child to cope with daily living. Severity for each of the two areas (social communication and restricted, repetitive behaviors) should be separately described using levels:

• Level 3: Requiring very substantial support.

• Level 2: Requiring substantial support

• Level 1: Requiring support.

There is table in the DSM-5 that more fully explains the levels and gives examples.

Those children about whom no one was complaining because of careful family accommodation now qualify, since onset before age 3 years is no longer required; only at an "early age."

Because autism often appears in children with intellectual disability or global developmental delay, these diagnoses take precedence for diagnosis unless social communication is below that expected for the child’s general developmental level. In that case, diagnoses of both intellectual disability and ASD apply.

While other features associated with autism are acknowledged in the description of ASD, they no longer drive the diagnosis. Associated factors should be described as part of the diagnoses, such as association with a known medical (attention-deficit/hyperactivity disorder) or genetic condition (Fragile X) or environmental factor; with or without intellectual disability; with or without language impairment; and any other neurodevelopmental, mental, or behavioral disorder. Any catatonia should be noted.

The change with possibly the greatest and most uncertain impact is the pull-out of a new disorder: social communication disorder. This is to be used for children with social language deficits if the criterion for repetitive and restricted behaviors is not met. These, usually higher-functioning children are the most likely to be removed from ASD diagnosis by the DSM-5 revisions. There are risks in this move as criteria are quite strict for the communication problems but overlap language disorder. The assessment tools needed for determining these criteria are not well developed and speech-language pathologists may not be well prepared to assess the repetitive behaviors to rule in or rule out ASD. Services for this diagnosis may be restricted to the speech-language component instead of including the social skills deficits and more intense treatment now provided for children classified as ASD.

As for changed diagnoses resulting in changed services, there is some good news: There may not be any service changes at all for your current patients. The DSM-5 Neurodevelopmental Disorders Work Group states that these changes will not affect children with a current diagnosis; no children will lose their current diagnoses on the spectrum. For services based on diagnosis, some children may not qualify in the future, but when services are based on severity children will likely qualify based on the new levels.

But what about the children yet to be diagnosed? One goal for reorganization in the DSM-5 was to improve specificity, but sensitivity may suffer, particularly for children previously called PDD NOS. Huerta et al. studied this using a cross classification of children already diagnosed to see which ones might be excluded under DSM-5 (Am. J. Psychiatry 2012;169:1056-64). She found that the DSM-5 criteria identified 91% of children with clinical DSM-IV PDD diagnoses, perhaps the most vulnerable to exclusion. The sensitivity of the DSM-5 criteria was high, even in girls and children younger than 4 years. This would be good news for retaining services.

But other studies on previously diagnosed cases do not agree. These studies using various existing samples predict that least 12% and potentially more than 40% of children who would have been classified as ASD under DSM-IV will not be under DSM-5, especially the most high functioning. Failure to meet criteria in the social communication domain was the most common reason for exclusion (39%) in one study. In addition, ASD prevalence is predicted to drop from 11.3% to 10.0% using the DSM-5 criteria (JAMA Psychiatry 2014 [doi: 10.1001/jamapsychiatry.2013.3893]). DSM-5 changes also will make it difficult for ongoing longitudinal research studies to compare with previous data.

Because the DSM-5 diagnosis of ASD is here to stay, what can you do to ease the transition? First, be able to explain the changes as described here. Then, implement or look for all aspects of the descriptors about comorbidity and severity when you are monitoring services being provided or advocating for more. Take special care that social communication disorder is diagnosed correctly and that both language and social skills are addressed. And encourage parents to join the national registries such as Autism Speaks and the Autism Speaks Autism Treatment Network and the Interactive Autism Network, which will help current and future research as DSM-5 efficacy is examined and even more changes made.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She has no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to Frontline Medical Communications. E-mail her at [email protected].