Autism Spectrum Disorders Toolkit for Pediatric Primary Care Providers in the District of Columbia Overview and Primer DC Collaborative for Mental Health in Pediatric Primary Care Washington, DC Summer 2020 Version 1.1 Page | 1 EXECUTIVE SUMMARY The DC Collaborative for Mental Health in Pediatric Primary Care (the DC Collaborative) is a local public- private partnership dedicated to improving the integration of mental health in pediatric primary care for children in the District of Columbia. This toolkit focuses specifically on supporting children with Autism Spectrum Disorders and their families, by providing primary care providers with the tools to help families navigate the developmental disabilities landscape in Washington, DC. Overview ....................................................................................................................................................... 3 Screening ..................................................................................................................................................... 6 MCHAT ..................................................................................................................................................... 7 Diagnostic Evaluation ................................................................................................................................... 9 Referral Algorithm ...................................................................................................................................... 11 Early Intervention and School Based Services .......................................................................................... 12 Treatment .................................................................................................................................................. 15 Therapeutic Modalities ........................................................................................................................... 15 Medications ............................................................................................................................................ 16 Complementary and Alternative Approaches ........................................................................................ 17 Supplemental Security Income and Insurance .......................................................................................... 19 Local Resources ......................................................................................................................................... 22 References and Acknowledgments ........................................................................................................... 27 Appendices ................................................................................................................................................. 32 Page | 2 OVERVIEW What is Autism Spectrum Disorder (ASD)? Autism is a neurodevelopmental disorder with onset early in development that is characterized by deficits in social communication and repetitive or restricted interests or behaviors.1 For a full description of the diagnostic criteria as set forth in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), please refer to 1 in 54 the Autism Speaks website. This diagnosis encompasses the DSM IV-TR’s Children in the diagnoses of Autistic Disorder, Asperger Syndrome, Pervasive Developmental US have ASD Disorder not otherwise specified, and Childhood Disintegrative Disorder.2 In addition, the DSM IV-TR did not allow co-occurring diagnoses with ASD, such as Attention Deficit Hyperactivity Disorder (ADHD), which is now permitted. According to the CDC, 1 in 54 children in the United States meets criteria for ASD.3 This prevalence has increased from recent years and has been attributed to a number of factors: the broadening of diagnostic criteria, increased awareness of ASD, implementation of universal 51 screening, increased availability of early intervention services, and potentially unknown biological factors.2 Despite evidence that early intervention for ASD months = can significantly improve patient outcomes4 and that ASD can be reliably Average age diagnosed by 24 months of age,5,6 the average age of a child at diagnosis is 51 of diagnosis months.3 Of children who are diagnosed with autism by age 8, only 44% received a developmental evaluation by 36 months.3 Looking at race and ethnicity, the prevalence of ASD for children aged 8 years is similar in non-Hispanic white, non- Hispanic black, and Asian/Pacific Islander children, but lower for Hispanic children.3 This represents an improvement in diagnostic disparities form prior monitoring reports where black children had a lower prevalence of ASD.7 Historically, prevalence estimates have also been lower in patients with low socioeconomic status (SES), suggesting that children in higher SES communities have greater access to services and are more readily identified.8 It is also important to note that a greater proportion of Hispanic and black children with ASD have comorbid intellectual disability compared to white children, which may indicate lack of recognition of the disorder in Hispanic and black children who have average or above-average intelligence.2,3,7 Additionally, black children with intellectual disability have a higher median age of diagnosis compared to white children (48 vs. 42 months). These statistics represent a significant need for interventions that promote earlier identification of ASD and enhanced access to referral options for children who present with developmental concerns. Are there differences between males and females with ASD? Males are four times more likely than females to be diagnosed with ASD.3,7 It is theorized that there may be a “female protective effect” contributing 4:1 to these statistics, and females with ASD are generally identified to have Ratio of M:F more cumulative risk factors when diagnosed than their male 9 diagnosed with peers. Females with ASD generally show more social behaviors than males ASD and are thought to have less repetitive behaviors; however, repetitive behaviors seen in females (i.e. playing with dolls) may be viewed as more socially acceptable.9 Females with ASD are also more likely to be diagnosed with an intellectual Page | 3 disability.3,7 Studies have shown females with ASD are more likely than males with ASD to have a genetic mutation that may explain their ASD. What are the risk factors that have been identified for ASD? Genetics Although no single cause has been identified, around 25% of children 25% with autism have an associated genetic syndrome that has been linked Of children with ASD to their autism diagnosis. Examples include the following: Tuberous have an associated Sclerosis, Fragile X Syndrome, Neurofibromatosis, Angelman syndrome, and Rett Syndrome. Other genes have been identified as genetic condition well and the study of the genetics of ASD is a rapidly evolving field.10 The American Academy of Pediatrics recommends genetic testing for all children diagnosed with ASD.2 It is also important to note that there are higher rates of autism in siblings of individuals with autism. Sibling recurrence risk may be as high as 10-20%.11,12 Vaccines such as Measles Mumps Rubella (MMR) have NOT been linked to Autism, and the original publication by gastroenterologist Andrew Wakefield that purported the link between the MMR vaccine and ASD was retracted from the Lancet.10 Perinatal factors2,10 ASD has been associated with the following perinatal factors: • Advanced parental age • Intrapartum hypoxia • Short interpregnancy interval • Prematurity or low birth weight • Multiple gestation • Infections, such as cytomegalovirus and • Maternal obesity rubella • Gestational diabetes • Teratogen exposure, such as valproic acid • Fetal growth restriction and thalidomide Environmental factors2,10 Environmental exposures such as organophosphates, pesticides, metals, volatile organic compounds, and air pollution have been associated with ASD. What are common comorbidities seen in children with ASD? 2,10 • Developmental: Intellectual disability • Psychiatric: Attention-Deficit Hyperactivity Disorder, Anxiety, Depression, Disruptive Behavior Disorders • Neurologic: Epilepsy, Sleep disturbances/ disorders • Other Medical: Feeding problems, Gastrointestinal symptoms (e.g., constipation, abdominal pain), Obesity What is the differential diagnosis for ASD? 10,12 • Social pragmatic language disorder • Reactive Attachment Disorder • ADHD • Post-Traumatic Stress Disorder (PTSD) • Developmental delay secondary to severe • Child abuse neglect • Childhood-onset schizophrenia Page | 4 What does the presentation of ASD look like at different ages? 13 Infants and Toddlers Childhood Adolescence • Atypical interest in objects • Learning difficulties • Growing social differences, • Limited functional use of • Behavior issues: poor pragmatic skills, poor toys - Compulsive behaviors executive functioning, poor • Lack of imaginative play and rituals independence with activities • Repetitive play - Aggression, tantrums, of daily living • Lack of joint attention, self-injury (often due • Psychiatric issues comorbid: pointing, language, and to difficulty ADHD, anxiety and nonverbal communication communicating) depression delay • Anxiety related to • At risk for victimization transitions, routine changes, and increased social demands • Safety concerns: elopement, self-injury, pica • Psychiatric issues – many children meet criteria for ADHD All Ages • Communication