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Almost all primary care providers (PCPs) have taken on diagnosing and managing ADHD. With about 12% of school aged children affected, typical PCPs can expect about 240 children with ADHD under their care. Adopting this primary care function has been helped by having clear diagnostic criteria for the three DMS 5 “presentations” of ADHD, open source tools (e.g. Vanderbilts), expectation of collaboration by educators, American Academy of Pediatrics (AAP) guidelines for diagnosis and management, Society for Developmental–Behavioral Pediatrics guidelines for “complex ADHD,” and access to effective medication treatments PCPs can provide (although less so for behavioral ones), cultural acceptance of individuals with ADHD, and especially reliable payment by insurers.
Screening
But what about PCP management of autism spectrum disorder (ASD), now affecting 2.8%, for an expected 60 children under care for each of us? It is more essential because very early detection and entry into evidence-based intervention has long-term benefits for the child and family that are not as crucial for ADHD. While ADHD symptoms may not impact functioning until age 7 or even 12 years of age, signs of ASD usually emerge earlier (by 18 months) but gradually and about 30% after apparently normal development even to age 2 years.
Screening is crucial, but unfortunately not perfect. Recent AAP surveys show that most PCPs screen for autism at the recommended 18 and 24 months. But what happens after that? How many offices are tracking referrals for positive screens for needed evaluations and early intervention? Our data shows that tracking is rarely done and children do not start to get the benefit of early intervention until 4.5 years of age, on average.
Diagnostic Testing
And screening is the easiest part of addressing ASD. Wait times for diagnostic testing can be agonizing months to years. Multiple programs are training PCPs to perform hands-on 10- to 30-minute secondary screening with considerable success. You can become proficient on tools such as STAT (Screening Tool for Autism in Two-Year-Olds), RITA-T (Rapid Interactive Screening Test for Autism in Toddlers), BISCUIT (Baby and Infant Screen for Children with Autism Traits), SORF (Systematic Observation of Red Flags), ADEC (Autism Detection in Early Childhood) or CARS (Childhood Autism Rating Scale) with a few hours of training. Even secondary assessments done virtually by PCPs such as TELE-ASD-PEDS quite accurately predict a verifiable ASD diagnosis for those referred by concerns. Some problems of the reported accuracy of these secondary screening processes have to do with validation in samples of children for whom parents or clinicians already had concern and generally not including many younger children in whom it is so important to detect. Level of confidence of developmental and behavioral pediatricians of the presence of ASD is highly related to ultimate diagnosis. But success with PCPs’ mastering secondary screening has not yet been reported to convince insurers to approve payment for intervention services such as Applied Behavior Analysis (ABA).
Comorbidity
Co-existing conditions affect the majority of patients with ASD (70%), compared with ADHD, but with a broader range and more debilitating and difficult to manage conditions. More medical co-existing issues such as intellectual disability (25%-75%), seizures (12%-26%), motor incoordination (51%), GI conditions (9%-91%), sleep difficulty (50%-80%), sleep apnea, congenital heart disease, avoidant-restrictive food intake disorder, autoimmune disorders, and genetic syndromes (e.g. Fragile X, tuberous sclerosis, Down, Angelman’s, untreated PKU, neurofibromatosis, Klinefelter syndrome) reflect the range of underpinnings of ASD. The need to detect and manage these co-existing issues, besides assessing hearing and vision, makes our skilled involvement and vigilance in ASD care essential. Referring for help from OTs, PTs, speech pathologists, neurologists, psychologists, and special educators as issues in their domains are prioritized is also our responsibility. We must also help families balance utilizing these resources so as to avoid overwhelm.
Anxiety (50%), ADHD (37%-85%), depression (54%), bipolar (7.3%), suicidal ideation (40% starting < 8 years), and emotion dysregulation, familiar to us from our management of ADHD, may develop but are often less well defined and more intractable in ASD, making use of screening tools essential. Using a system like CHADIS that has online pre-visit and monitoring screens delivered based on algorithms for the numerous co-existing conditions, automated handouts, and functions to make and track referral success can facilitate care for this complex chronic condition. Identifying mental health providers with ASD expertise is more difficult, so more management is on us. While medications for these conditions can be beneficial, we need to learn to use lower doses, slower dose increases, and employ problem-solving of side effects with more parent collaboration than for ADHD as children with ASD often cannot self-report effectively. We need to ask about the common ad hoc use of complementary medications and substances (32%-87%) that may be complicating. Of course, these conditions and the caveats of management require more of our time with the patient and family as well as communication with the many other professionals involved. It is important to set our own and our families’ expectations (and schedules) for much more frequent contact and also to bill appropriately with chronic care (99487,89,90) and collaborative care CPT codes (99492,3,4 or G2214).
Behavioral Manifestations
During our care, the often extreme behavioral manifestations of ASD may be the most pressing issues. We need new understanding and skills to sort out and counsel on inflexible, explosive, and sensory triggered behaviors. Just as for ADHD, using the approach of Functional Behavioral Assessment and plans for home as well as school behavior can be key. More difficult in ASD is looking for physical causes, since the child may not provide clear cues because of communication and sensory differences. Conditions common in children with ASD such as constipation, dental caries, otitis, dietary intolerances, allergies, migraine, sleep deficits, menstrual cramps, or fears and changes from puberty manifesting behaviorally are often tricky to sort out.
While the diagnosis of ASD, as for ADHD, does not require any laboratory testing, looking for possible causes is important information for the family and someday may also lead to genetic or other therapies. We need to know that recommendations include screening for Ferritin, Pb, chromosomal microarray and FMR I testing as well as checking that PKU was normal; MECP 2 is indicated in females and symptomatic males; and PTENS testing for children with head circumference greater than 2.5-3 SD. Metabolic and mitochondrial assays are indicated only when symptoms suggest. We need to develop confidence to reserve MRIs or EEGs for cases with abnormal neuro. exams, regression, or history of seizures. It is demanding to keep up with AAP recommendations in this very active area of research.
Interventions
The interventions for ADHD are generally school accommodations and therapies for comorbidities. In contrast, since core social communication skills are the main deficit in ASD, all children screened positive for ASD should be referred for early intervention while awaiting, as well as after, diagnosis. While all states have no or low-cost early intervention, quality and quantity (of hours offered) varies. We should also recommend and try to determine if evidence-based intervention is being provided, such as pivotal response training, UCLA discrete trial therapy, Carbone’s verbal behavior, applied behavior analysis (ABA), Early Start Denver Model, and sometimes music and social skills trainings (effect size 0.42-0.76). Such professional interventions have best evidence with more than 25 hours/week but 15 hours has benefit for higher functioning children. CBT can help anxiety even in younger children. One way for families to provide more hours and more generalizable intervention is coaching by the PLAY Project or DIRFloortime, parent mediated interventions with evidence, some with training both in person or online. Alternative communication training and other condition specific assistance are often needed (e.g. Picture Exchange Communication System for nonverbal children).
While we should already be familiar with writing 504 plan and IEP requests to schools, which also apply to children with ASD, in addition we need to be ready to advise about other legal rights including autism waivers, wraparound services, guardianship, and trust accounts. We can share quality educational materials available online (e.g. from Autism Speaks, SPARK, and Autism Navigator). Social media groups may be supportive, but also may contain disinformation we need to dispel.
Unfortunately, templates, questionnaires, and lack of interdisciplinary referral and communication functions of EHRs don’t support the complexities of care for ASD. While the AAP has guidelines for diagnosis and management and an online toolkit, consider adding a system with an autism-specific module like CHADIS and joining the Autism Care Network or ECHO Autism sessions to get both information and support to take on the evolving critical role of autism care.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at [email protected].
Almost all primary care providers (PCPs) have taken on diagnosing and managing ADHD. With about 12% of school aged children affected, typical PCPs can expect about 240 children with ADHD under their care. Adopting this primary care function has been helped by having clear diagnostic criteria for the three DMS 5 “presentations” of ADHD, open source tools (e.g. Vanderbilts), expectation of collaboration by educators, American Academy of Pediatrics (AAP) guidelines for diagnosis and management, Society for Developmental–Behavioral Pediatrics guidelines for “complex ADHD,” and access to effective medication treatments PCPs can provide (although less so for behavioral ones), cultural acceptance of individuals with ADHD, and especially reliable payment by insurers.
Screening
But what about PCP management of autism spectrum disorder (ASD), now affecting 2.8%, for an expected 60 children under care for each of us? It is more essential because very early detection and entry into evidence-based intervention has long-term benefits for the child and family that are not as crucial for ADHD. While ADHD symptoms may not impact functioning until age 7 or even 12 years of age, signs of ASD usually emerge earlier (by 18 months) but gradually and about 30% after apparently normal development even to age 2 years.
Screening is crucial, but unfortunately not perfect. Recent AAP surveys show that most PCPs screen for autism at the recommended 18 and 24 months. But what happens after that? How many offices are tracking referrals for positive screens for needed evaluations and early intervention? Our data shows that tracking is rarely done and children do not start to get the benefit of early intervention until 4.5 years of age, on average.
Diagnostic Testing
And screening is the easiest part of addressing ASD. Wait times for diagnostic testing can be agonizing months to years. Multiple programs are training PCPs to perform hands-on 10- to 30-minute secondary screening with considerable success. You can become proficient on tools such as STAT (Screening Tool for Autism in Two-Year-Olds), RITA-T (Rapid Interactive Screening Test for Autism in Toddlers), BISCUIT (Baby and Infant Screen for Children with Autism Traits), SORF (Systematic Observation of Red Flags), ADEC (Autism Detection in Early Childhood) or CARS (Childhood Autism Rating Scale) with a few hours of training. Even secondary assessments done virtually by PCPs such as TELE-ASD-PEDS quite accurately predict a verifiable ASD diagnosis for those referred by concerns. Some problems of the reported accuracy of these secondary screening processes have to do with validation in samples of children for whom parents or clinicians already had concern and generally not including many younger children in whom it is so important to detect. Level of confidence of developmental and behavioral pediatricians of the presence of ASD is highly related to ultimate diagnosis. But success with PCPs’ mastering secondary screening has not yet been reported to convince insurers to approve payment for intervention services such as Applied Behavior Analysis (ABA).
Comorbidity
Co-existing conditions affect the majority of patients with ASD (70%), compared with ADHD, but with a broader range and more debilitating and difficult to manage conditions. More medical co-existing issues such as intellectual disability (25%-75%), seizures (12%-26%), motor incoordination (51%), GI conditions (9%-91%), sleep difficulty (50%-80%), sleep apnea, congenital heart disease, avoidant-restrictive food intake disorder, autoimmune disorders, and genetic syndromes (e.g. Fragile X, tuberous sclerosis, Down, Angelman’s, untreated PKU, neurofibromatosis, Klinefelter syndrome) reflect the range of underpinnings of ASD. The need to detect and manage these co-existing issues, besides assessing hearing and vision, makes our skilled involvement and vigilance in ASD care essential. Referring for help from OTs, PTs, speech pathologists, neurologists, psychologists, and special educators as issues in their domains are prioritized is also our responsibility. We must also help families balance utilizing these resources so as to avoid overwhelm.
Anxiety (50%), ADHD (37%-85%), depression (54%), bipolar (7.3%), suicidal ideation (40% starting < 8 years), and emotion dysregulation, familiar to us from our management of ADHD, may develop but are often less well defined and more intractable in ASD, making use of screening tools essential. Using a system like CHADIS that has online pre-visit and monitoring screens delivered based on algorithms for the numerous co-existing conditions, automated handouts, and functions to make and track referral success can facilitate care for this complex chronic condition. Identifying mental health providers with ASD expertise is more difficult, so more management is on us. While medications for these conditions can be beneficial, we need to learn to use lower doses, slower dose increases, and employ problem-solving of side effects with more parent collaboration than for ADHD as children with ASD often cannot self-report effectively. We need to ask about the common ad hoc use of complementary medications and substances (32%-87%) that may be complicating. Of course, these conditions and the caveats of management require more of our time with the patient and family as well as communication with the many other professionals involved. It is important to set our own and our families’ expectations (and schedules) for much more frequent contact and also to bill appropriately with chronic care (99487,89,90) and collaborative care CPT codes (99492,3,4 or G2214).
Behavioral Manifestations
During our care, the often extreme behavioral manifestations of ASD may be the most pressing issues. We need new understanding and skills to sort out and counsel on inflexible, explosive, and sensory triggered behaviors. Just as for ADHD, using the approach of Functional Behavioral Assessment and plans for home as well as school behavior can be key. More difficult in ASD is looking for physical causes, since the child may not provide clear cues because of communication and sensory differences. Conditions common in children with ASD such as constipation, dental caries, otitis, dietary intolerances, allergies, migraine, sleep deficits, menstrual cramps, or fears and changes from puberty manifesting behaviorally are often tricky to sort out.
While the diagnosis of ASD, as for ADHD, does not require any laboratory testing, looking for possible causes is important information for the family and someday may also lead to genetic or other therapies. We need to know that recommendations include screening for Ferritin, Pb, chromosomal microarray and FMR I testing as well as checking that PKU was normal; MECP 2 is indicated in females and symptomatic males; and PTENS testing for children with head circumference greater than 2.5-3 SD. Metabolic and mitochondrial assays are indicated only when symptoms suggest. We need to develop confidence to reserve MRIs or EEGs for cases with abnormal neuro. exams, regression, or history of seizures. It is demanding to keep up with AAP recommendations in this very active area of research.
Interventions
The interventions for ADHD are generally school accommodations and therapies for comorbidities. In contrast, since core social communication skills are the main deficit in ASD, all children screened positive for ASD should be referred for early intervention while awaiting, as well as after, diagnosis. While all states have no or low-cost early intervention, quality and quantity (of hours offered) varies. We should also recommend and try to determine if evidence-based intervention is being provided, such as pivotal response training, UCLA discrete trial therapy, Carbone’s verbal behavior, applied behavior analysis (ABA), Early Start Denver Model, and sometimes music and social skills trainings (effect size 0.42-0.76). Such professional interventions have best evidence with more than 25 hours/week but 15 hours has benefit for higher functioning children. CBT can help anxiety even in younger children. One way for families to provide more hours and more generalizable intervention is coaching by the PLAY Project or DIRFloortime, parent mediated interventions with evidence, some with training both in person or online. Alternative communication training and other condition specific assistance are often needed (e.g. Picture Exchange Communication System for nonverbal children).
While we should already be familiar with writing 504 plan and IEP requests to schools, which also apply to children with ASD, in addition we need to be ready to advise about other legal rights including autism waivers, wraparound services, guardianship, and trust accounts. We can share quality educational materials available online (e.g. from Autism Speaks, SPARK, and Autism Navigator). Social media groups may be supportive, but also may contain disinformation we need to dispel.
Unfortunately, templates, questionnaires, and lack of interdisciplinary referral and communication functions of EHRs don’t support the complexities of care for ASD. While the AAP has guidelines for diagnosis and management and an online toolkit, consider adding a system with an autism-specific module like CHADIS and joining the Autism Care Network or ECHO Autism sessions to get both information and support to take on the evolving critical role of autism care.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at [email protected].
Almost all primary care providers (PCPs) have taken on diagnosing and managing ADHD. With about 12% of school aged children affected, typical PCPs can expect about 240 children with ADHD under their care. Adopting this primary care function has been helped by having clear diagnostic criteria for the three DMS 5 “presentations” of ADHD, open source tools (e.g. Vanderbilts), expectation of collaboration by educators, American Academy of Pediatrics (AAP) guidelines for diagnosis and management, Society for Developmental–Behavioral Pediatrics guidelines for “complex ADHD,” and access to effective medication treatments PCPs can provide (although less so for behavioral ones), cultural acceptance of individuals with ADHD, and especially reliable payment by insurers.
Screening
But what about PCP management of autism spectrum disorder (ASD), now affecting 2.8%, for an expected 60 children under care for each of us? It is more essential because very early detection and entry into evidence-based intervention has long-term benefits for the child and family that are not as crucial for ADHD. While ADHD symptoms may not impact functioning until age 7 or even 12 years of age, signs of ASD usually emerge earlier (by 18 months) but gradually and about 30% after apparently normal development even to age 2 years.
Screening is crucial, but unfortunately not perfect. Recent AAP surveys show that most PCPs screen for autism at the recommended 18 and 24 months. But what happens after that? How many offices are tracking referrals for positive screens for needed evaluations and early intervention? Our data shows that tracking is rarely done and children do not start to get the benefit of early intervention until 4.5 years of age, on average.
Diagnostic Testing
And screening is the easiest part of addressing ASD. Wait times for diagnostic testing can be agonizing months to years. Multiple programs are training PCPs to perform hands-on 10- to 30-minute secondary screening with considerable success. You can become proficient on tools such as STAT (Screening Tool for Autism in Two-Year-Olds), RITA-T (Rapid Interactive Screening Test for Autism in Toddlers), BISCUIT (Baby and Infant Screen for Children with Autism Traits), SORF (Systematic Observation of Red Flags), ADEC (Autism Detection in Early Childhood) or CARS (Childhood Autism Rating Scale) with a few hours of training. Even secondary assessments done virtually by PCPs such as TELE-ASD-PEDS quite accurately predict a verifiable ASD diagnosis for those referred by concerns. Some problems of the reported accuracy of these secondary screening processes have to do with validation in samples of children for whom parents or clinicians already had concern and generally not including many younger children in whom it is so important to detect. Level of confidence of developmental and behavioral pediatricians of the presence of ASD is highly related to ultimate diagnosis. But success with PCPs’ mastering secondary screening has not yet been reported to convince insurers to approve payment for intervention services such as Applied Behavior Analysis (ABA).
Comorbidity
Co-existing conditions affect the majority of patients with ASD (70%), compared with ADHD, but with a broader range and more debilitating and difficult to manage conditions. More medical co-existing issues such as intellectual disability (25%-75%), seizures (12%-26%), motor incoordination (51%), GI conditions (9%-91%), sleep difficulty (50%-80%), sleep apnea, congenital heart disease, avoidant-restrictive food intake disorder, autoimmune disorders, and genetic syndromes (e.g. Fragile X, tuberous sclerosis, Down, Angelman’s, untreated PKU, neurofibromatosis, Klinefelter syndrome) reflect the range of underpinnings of ASD. The need to detect and manage these co-existing issues, besides assessing hearing and vision, makes our skilled involvement and vigilance in ASD care essential. Referring for help from OTs, PTs, speech pathologists, neurologists, psychologists, and special educators as issues in their domains are prioritized is also our responsibility. We must also help families balance utilizing these resources so as to avoid overwhelm.
Anxiety (50%), ADHD (37%-85%), depression (54%), bipolar (7.3%), suicidal ideation (40% starting < 8 years), and emotion dysregulation, familiar to us from our management of ADHD, may develop but are often less well defined and more intractable in ASD, making use of screening tools essential. Using a system like CHADIS that has online pre-visit and monitoring screens delivered based on algorithms for the numerous co-existing conditions, automated handouts, and functions to make and track referral success can facilitate care for this complex chronic condition. Identifying mental health providers with ASD expertise is more difficult, so more management is on us. While medications for these conditions can be beneficial, we need to learn to use lower doses, slower dose increases, and employ problem-solving of side effects with more parent collaboration than for ADHD as children with ASD often cannot self-report effectively. We need to ask about the common ad hoc use of complementary medications and substances (32%-87%) that may be complicating. Of course, these conditions and the caveats of management require more of our time with the patient and family as well as communication with the many other professionals involved. It is important to set our own and our families’ expectations (and schedules) for much more frequent contact and also to bill appropriately with chronic care (99487,89,90) and collaborative care CPT codes (99492,3,4 or G2214).
Behavioral Manifestations
During our care, the often extreme behavioral manifestations of ASD may be the most pressing issues. We need new understanding and skills to sort out and counsel on inflexible, explosive, and sensory triggered behaviors. Just as for ADHD, using the approach of Functional Behavioral Assessment and plans for home as well as school behavior can be key. More difficult in ASD is looking for physical causes, since the child may not provide clear cues because of communication and sensory differences. Conditions common in children with ASD such as constipation, dental caries, otitis, dietary intolerances, allergies, migraine, sleep deficits, menstrual cramps, or fears and changes from puberty manifesting behaviorally are often tricky to sort out.
While the diagnosis of ASD, as for ADHD, does not require any laboratory testing, looking for possible causes is important information for the family and someday may also lead to genetic or other therapies. We need to know that recommendations include screening for Ferritin, Pb, chromosomal microarray and FMR I testing as well as checking that PKU was normal; MECP 2 is indicated in females and symptomatic males; and PTENS testing for children with head circumference greater than 2.5-3 SD. Metabolic and mitochondrial assays are indicated only when symptoms suggest. We need to develop confidence to reserve MRIs or EEGs for cases with abnormal neuro. exams, regression, or history of seizures. It is demanding to keep up with AAP recommendations in this very active area of research.
Interventions
The interventions for ADHD are generally school accommodations and therapies for comorbidities. In contrast, since core social communication skills are the main deficit in ASD, all children screened positive for ASD should be referred for early intervention while awaiting, as well as after, diagnosis. While all states have no or low-cost early intervention, quality and quantity (of hours offered) varies. We should also recommend and try to determine if evidence-based intervention is being provided, such as pivotal response training, UCLA discrete trial therapy, Carbone’s verbal behavior, applied behavior analysis (ABA), Early Start Denver Model, and sometimes music and social skills trainings (effect size 0.42-0.76). Such professional interventions have best evidence with more than 25 hours/week but 15 hours has benefit for higher functioning children. CBT can help anxiety even in younger children. One way for families to provide more hours and more generalizable intervention is coaching by the PLAY Project or DIRFloortime, parent mediated interventions with evidence, some with training both in person or online. Alternative communication training and other condition specific assistance are often needed (e.g. Picture Exchange Communication System for nonverbal children).
While we should already be familiar with writing 504 plan and IEP requests to schools, which also apply to children with ASD, in addition we need to be ready to advise about other legal rights including autism waivers, wraparound services, guardianship, and trust accounts. We can share quality educational materials available online (e.g. from Autism Speaks, SPARK, and Autism Navigator). Social media groups may be supportive, but also may contain disinformation we need to dispel.
Unfortunately, templates, questionnaires, and lack of interdisciplinary referral and communication functions of EHRs don’t support the complexities of care for ASD. While the AAP has guidelines for diagnosis and management and an online toolkit, consider adding a system with an autism-specific module like CHADIS and joining the Autism Care Network or ECHO Autism sessions to get both information and support to take on the evolving critical role of autism care.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at [email protected].