Handbook of Treatment Planning for Children with Autism and Other Neurodevelopmental Disorders

Description

This handbook addresses treatment planning for children with autism spectrum disorder (ASD) and other neurodevelopmental disabilities (NDDs) using a medical home perspective. It examines the medical home model, which has been promoted as the standard of care by the American Academy of Pediatrics since 2002, emphasizing collaboration between patients, families, and providers to optimize care. The handbook addresses treatment planning, including the coordination of the care provided by multiple specialists with a clear, shared vision for maximizing each child’s potential. Key areas of coverage include: · Elements of treatment planning, history of the medical home model, documentation, and strategies to facilitate communication. · Goals of treatment from the perspectives of the family, person served, care providers, and fiscal and regulatory bodies. · Role of each specialist, highlighting the most common conditions experienced by children with ASD and other NDD with expectations for assessment and treatment. · Detailed recommendations for making referrals and assisting the child and family in preparing for appointments. The Handbook of Treatment Planning for Children with Autism Spectrum Disorder and Other Neurodevelopmental Disabilities is a must-have resource for researchers, professors, and graduate students as well as clinicians, therapists, and other professionals across such interrelated disciplines as clinical child, school, and developmental psychology, child and adolescent psychiatry, social work, rehabilitation medicine/therapy, pediatrics, and special education. Notes on Language Use Acknowledgments Introduction Contents Contributors Part I: Overview of Treatment Planning 1: Treatment Planning for Children with Autism and Developmental Disability Introduction Treatment Planning Treatment Planning in General Medical Care: The Biomedical Model The Biopsychosocial Model Treatment Planning in Behavioral Health Care Treatment Planning in the Medical Home Elements of the SPoC SPoC: The Medical Summary SPoC: Goal Setting SPoC: Negotiated Actions SPoC: Coping Plan SPoC: Progress Monitoring Navigating Challenges in Treatment Planning Care Coordination Other Types of Service Plans Home- and Community-Based Services School-Based Services Court-Based Services Summary References 2: Medical Home for Children with Autism Spectrum Disorder and Other Developmental Disabilities The Medical Home Concept Why the Medical Home Should Be the Locus of Care for Kids with Autism Spectrum Disorders and Other Developmental/Behavioral Disabilities Growing Numbers of Children Require Specialized Medical Care Pediatricians Are Uniquely Situated to Identify Care Needs Newborn Screening Screening for ASD The Medical Home Can Best Respond to Initial Concerns or a Positive Screen and Coordinate Care Role of the Medical Home in the Diagnostic Journey for Children with Developmental Delays Coordinating Referrals to Therapy Evaluations Before the Specialist Visit? Yes! Behavioral Therapy and Autism Autism-Specific Behavioral Therapy Applied Behavior Analysis (ABA) Verbal Behavior Therapy (VBT) Cognitive Behavioral Therapy (CBT) Developmental and Individual Differences Relationship (DIR) Therapy Relationship Development Intervention (RDI) Social Skills Groups Occupational Therapy for Sensory Processing Medical Specialty Referrals Care Coordination and the Medical Home The Medical Home “Toolbox” Autism Spectrum Disorder: The Diagnosis and Ongoing Care Pediatric Psychiatry Collaboratives Referrals Beyond the Medical Home Team Medical Home: Coordinated, Family-Centered Care That Improves Outcomes References 3: The Family Perspective: Treatment Planning for Children with Autism Spectrum Disorder, Developmental Disabilities, and Medical Complexity Introduction A Lesson to Remember A Change in Perspective Overview Information for Parents and Caregivers Initial Red Flags: “My Child Versus the Typical Trajectory of Development” Developmental Disability: “What Are You Saying About My Child?” IDEA and Early Childhood Intervention Services: “My 3-Year-Old Can Go To School?” The Diagnostic Process: “We Have to See Another Specialist?” DSM-V Diagnostic Criteria for Autism Spectrum Disorder Diagnostic Considerations: The Evaluation of Differential Diagnoses and Comorbidities Recommendations for the Treatment of Autism Spectrum Disorder For Providers: The Provider-Family Relationship − “I’m an Expert About My Child Too Because I’m the Parent. Let’s Work Together” For Providers: What Your Patients Want You to Know Living with ASD, I/DD, and Medical Complexity: “Help Us By Respecting Us and Supporting Better Quality of Life” Preferred Language Matters Stages of Parental Development Proposed Stages for Parent Development for Families with a Child with Medical Complexity What Is Good Parenting? Parenting Styles Protective and Risk Factors Quality of Life Quality of Life for Children with ASD and Developmental Disabilities Quality of Life for Parents and Caregivers Instilling Hope: “What Is On the Horizon?” References 4: Systems of Care for Children and Youth with Autism Spectrum Disorders Introduction Brief Historical Review of the Evolution of ASD Services Service System Roles in the Care of People with ASD Early Intervention Services Educational System Specialty Services Medical Specialties Psychological Specialties Occupational Therapists, Speech/Language Therapists, and Physical Therapists Private Providers Mental Health and Developmental Disorder/Intellectual Disability Agencies Academic Sector Residential Treatment Centers Role of Funding in Transforming and Shaping ASD Services Racial/Ethnic Disparities Framing ASD Services Within a Community-Based Systems of Care Model Conclusion References 5: Progress Monitoring During the Treatment of Autism and Developmental Disorders Progress Monitoring Comorbid Conditions Anxiety Disorders Sleep Problems Challenging Behaviors Depression Attention Deficit/Hyperactivity Disorder Progress Monitoring Methods Progress Monitoring Challenges Progress Monitoring Limitations Limited Validity Potential Bias Limited Measures that Evaluate ASD Symptoms Individualized Progress Monitoring Progress Monitoring Throughout the Life Span Developments in Progress Monitoring Treatment Outcome Measures for ASD ASD-Specific Measures Autism Treatment Evaluation Checklist Childhood Autism Rating Scale Psychoeducational Profile Social Responsiveness Scale Developmental Measures Bayley Scales of Infant and Toddler Development Adaptive Measure Vineland Adaptive Behavior Scales Behavioral Measures Aberrant Behavior Checklist Behavior Assessment System for Children Children’s Sleep Habits Questionnaire Anxiety and Depression Measures Child Depression Inventory Multidimensional Anxiety Scale for Children Pediatric Anxiety Rating Scales Attention Deficit/Hyperactivity Disorder Measures ADHD Symptoms Rating Scale Summary References Part II: Professional Perspectives on Treatment 6: Allergy and Immunology in Autism Spectrum Disorder and Other Neurodevelopmental Disorders Introduction Brief Review of Basic Immunology Referring to an Allergist/Immunologist Primary Immunodeficiencies Humoral Immunity Common Variable Immunodeficiency (CVID) IgA Deficiency Agammaglobulinemia Hyper-IgM Syndromes IgG Subclass Deficiency T Cells and Cellular Immunity Combined Immunodeficiency (CID) and Severe Combined Immunodeficiency (SCID) Innate Deficiencies Chronic Granulomatous Disease (CGD) Leukocyte Adhesion Deficiency (LAD) Complement and Its Deficiencies Selected Neurodevelopmental Disorders with Associated Immune Defects Cornelia de Lange Syndrome Fetal Alcohol Syndrome Rubinstein-Taybi Syndrome (RTS) Smith-Magenis Syndrome Trisomy 21 (Down Syndrome) 22q11.2 Deletion Syndrome Autism Spectrum Disorder and the Immune System Vaccinology Allergy Allergic Disease in ASD Food Allergy Allergic Rhinitis Rhinosinusitis Asthma Atopic Dermatitis (AD) Allergy Testing Serum Allergy Testing Skin Testing Process Oral Food Challenge Limitations and Potential Pitfalls Food Allergy Testing Medications Which Interfere with Skin Testing Future Treatment Options Conclusion References 7: The Pediatric Cardiologist’s Role in the Care of Children with Autism and Other Intellectual and Developmental Disabilities The Role of Cardiology in the Pediatric Medical Home Scope of Congenital Heart Disease Mortality of Congenital Heart Defects Recommendations for Making Referrals Infants Toddlers and Preschoolers Older Children and Adolescents The Cardiovascular Examination Association of Congenital Heart Defects and Autism Spectrum Disorders Cardiac Considerations in Select Mental Disorders Attention Deficit Hyperactivity Disorder (ADHD) Anxiety Disorders Depression Responding to Symptoms Chest Pain Syncope Palpitations The Assessment and Treatment of Common Cardiac Conditions Clinical Examination Electrocardiogram Echocardiogram Cardiac Computerized Tomography Imaging (Cardiac CT) Cardiac Magnetic Resonance Imaging (Cardiac MRI) Managing Side Effects of Cardiac Medications Cardiac Catheterization Cardiac Surgery Additional Guidance for the Primary Care Pediatrician Assisting the Child and Family in Preparing for Appointments Future Directions and Upcoming Research References 8: Oral Health Treatment Planning: Dental Disease Prevention and Oral Health Promotion for Children with Autism Spectrum Disorder and Developmental Disabilities Introduction Common Oral Conditions Gingivitis Malocclusion Tooth Decay (Dental Caries or Cavities) Addressing the Risk Factors for Tooth Decay Characteristics of ASD Associated with Tooth Decay Addressing Challenges to Good Oral Hygiene Behaviors Limiting Dietary Sugars Medication and Tooth Decay Access to Dental Care Additional Risk Factor Modification Strategies Strategies for Home Strategies for the Dentist’s Office Strategies During Dental Care Specifics of Dental Treatment Noninvasive Dental Treatment Protective Stabilization Sedation and General Anesthesia Referrals for Specialty Dental Treatment Transition to Adult-Centered Dental Care Future Directions References 9: The Registered Dietitian Nutritionist’s Treatment of Children with Developmental Disabilities or Autism Spectrum Disorders Introduction Brief Overview of Pediatric Nutrition The Role of the RDN in Treating Children with Developmental Disabilities Overview of Feeding Problems in Children with ASD A Sensory Processing Connection to ASD and Nutritional Risk A Motor Connection to ASD and Nutritional Risk A Behavioral Connection to ASD and Nutritional Risk Dietary Intake in Children with ASD Referring Children to the RDN Comprehensive Screening Preparing the Family for an RDN Appointment What to Expect at the Appointment The RDNs Treatment of Children with ASD Obesity Gastrointestinal Dysfunction Sleep Disturbances Dietary Treatment of ASD Conclusion References 10: Commonly Encountered Endocrine Problems in Children with Developmental Disabilities Introduction Common Disorders Treated by Endocrinologists Trisomy 21 Brief Overview and Epidemiology Referral to the Pediatric Endocrinologist Turner Syndrome Definition and Epidemiology Problems Within the Scope of Pediatric Endocrinology Prader-Willi Syndrome Definition and Epidemiology Problems Within the Scope of Pediatric Endocrinology Russell-Silver Syndrome Definition and Epidemiology Problems Within the Scope of Pediatric Endocrinology Optic Nerve Hypoplasia Spectrum and Septo-optic Dysplasia Definition and Epidemiology Problems Within the Scope of Pediatric Endocrinology Other Disorders Attention-Deficit Hyperactivity Disorder Definition and Epidemiology Problems Within the Scope of Pediatric Endocrinology Fetal Alcohol Spectrum Disorder Definition and Epidemiology Problems Within the Scope of Pediatric Endocrinology Endocrine-Related Adverse Effects of Medications Commonly Used in the Treatment of Developmental/Behavioral Disorders Discussion on Meds Causing Weight Gain Overweight and Obesity Medications Closing Remarks References 11: The INSPIRED Hospital Care of Children with Developmental Disability Introduction Call for Accommodations The INSPIRED Hospital Care Framework I, INFORM: Preparing for Hospitalization N, NETWORK: Interdisciplinary Care S, SCREEN/ASSESS: Tell Me More About You P, PREPARATION: Day-to-Day Experience in the Hospital I, IMPLEMENT: The Plan in Action R, REVIEW: How Did We Do? E, EVALUATE: Evaluate and Address Barriers to Care D, DREAM: Dream for a Better Tomorrow References 12: Planning for Special Education Services: A Primer for Health-Care Professionals Introduction A Historical Perspective: A Rocky Start The Education for All Handicapped Children’s Act: Public Law (PL) 94-142 Educationally Necessary Services Implementing PL 94-142: Referral and Evaluation Amendments to PL 94-142 Individual Transition Plan (ITP) Public Law 105-17 (1997 Amendments to PL 94-142) Understanding the Individualized Educational Plans (IEPs) and the Individualized Accommodation Plans (IAPs) What Is Included in an IEP Versus What Is Included in an IAP Public Law 108-446 (2004 Amendments to PL 94-142) Individuals with Disabilities Education Improvement Act of 2004 (IDEIA or IDEA 2004) Response to Intervention (RTI), Positive Behavioral Interventions and Supports (PBIS), and Multi-Tiered System of Supports (MTSS) What Is PBIS? Functional Behavioral Assessments (FBAs) and Behavior Intervention Plans (BIPs) Individual Health Plans (IHPs) Individual Health Plans/Emergency Care Plans IHPs as Part of Section 504 of the Rehabilitation Act of 1973 IHPs as Part of IDEA DSM-5 Versus ICD-11 Codes Summary References 13: Pediatric Gastroenterology and Children with Autism Spectrum Disorder and Developmental Disabilities Introduction Universal Monitoring from GI Perspective Monitoring Physical Exam Growth Chart Monitoring: Identification of Failure to Thrive and Obesity Failure to Thrive Overweight and Obesity Abdominal Exam Skin and Physical Exam Findings Consistent with Micro- and Macronutrient Deficiencies Taking Stool Histories: Frequency and Consistency Including Bristol Stool Chart Screening Lab and Imaging Evaluation Treatment Planning for GI Care: Referrals Concerning Findings That Warrant Immediate Referral for Hospital Admission/ED (Emergency Department) Evaluation Referral to Outside Providers Overview of Specific GI Conditions Organic Conditions Failure to Thrive Vomiting Celiac Disease Gas and Bloating Inflammatory Bowel Disease Disorders of the Liver Jaundice Acute Hepatitis and Liver Failure Chronic Hepatitis Functional GI Conditions Selective Eating: Avoidant/Restrictive Food Intake Disorder Rumination Pica Constipation and Encopresis Functional Abdominal Pain Interventions and Working with Families Talking to Families Complementary and Alternative Medicine (CAM)-Based Approaches Diets Red Dye Diet Gluten-Free and Casein-Free Diet Without Evidence of Celiac Disease or Allergies Ketogenic Diet Microbiome Management Fecal Transplant Probiotics Conclusion References 14: An Approach to the Genetic Evaluation of Children with Autism Spectrum Disorders Introduction An Overview of the Genetics of ASD A Review of Basic Concepts in Genetics and Genetic Testing The Building Blocks of Inheritance Review of Selected Genetic Tests The Karyotype Chromosome Microarray (CMA) Fluorescence In Situ Hybridization (FISH) Next-Generation Sequencing: Whole Exome Sequencing (WES) and Targeted Next-Generation Gene Panel Sequencing (NGS) Whole Genome Sequencing (WGS) The Genetic Evaluation of Children with ASD The History with a Focus on Genetics The Review of Systems Detailed Family History Physical Examination Genetic Testing for Patients with ASD Vignette 1: Marcus: The Evaluation of a Child with ASD Without an Obvious Syndrome or Other Causes CMA for ASD Fragile X Testing Vignette 1: Marcus’ Outcome Vignette 2: Lucia: The Evaluation of a Child with ASD and Classic Features of a Microdeletion Syndrome Vignette 2: Lucia’s Outcome Vignette 3: MaKayla: The Evaluation of a Child with ASD and Evidence for a Specific Single Gene Syndrome Vignette 3: MaKayla: Outcome Vignette 4: Ali: The Evaluation of a Macrocephalic Child with Evidence for a Specific Single Gene Syndrome Vignette 4: Ali: Outcome Vignette 5: Juan: The Evaluation of a Child with ASD Who May Have a Single Gene Disorder but Whose Findings Are Not Indicative of a Specific Diagnosis Vignette 5: Juan: Outcome Diagnostic Yields and Genetic Testing Algorithms for ASD ASD-Related Genetic Counseling Future Directions References 15: Prematurity and Autism Spectrum Disorder Introduction Overview of Autism Spectrum Disorders from the Neonatologist’s Perspective The Brain of the Preterm Infant and ASD Injury and Infection Encephalopathy of Prematurity and Risk of ASD in Preterm Infants Neuroimaging for Identifying Neonates at Risk of ASD in Neonates Born Preterm Late Preterm Infants and ASD Monitoring for Early Signs of ASD Other Risk Factors Associated with Prematurity and ASD Advanced Paternal Age Assisted Reproductive Technology Maternal Medication Use Maternal Obesity Parental Psychiatric History Inhospital Interventions to Mitigate the Risk of ASD in Preterm Infants Fatty Acid Supplementation Neurodevelopmental Trajectory of Preterm Infants and Toddlers Post-NICU Care Ongoing Developmental Monitoring Recommendations References 16: The Neurological Perspective: Autism Spectrum Disorders and Other Developmental Disabilities Introduction Epilepsy Pharmacological Management of Epilepsy Beyond the Pharmacological Management of Epilepsy Motor Disorders Motor Disorders: Developmental Coordination Disorder/Dyspraxias Motor Disorders: Stereotypies Sleep Disorders Neurological Considerations in the Diagnosis of ASD Screening for ASD Clinical Evaluation of ASD Symptoms Neurobiology: Insights from MRI Findings and Electrophysiologic Studies Neuroimaging Electrophysiological Studies Management Future Directions References 17: The Management of Chronic Pain in Children with Autism and Developmental Disability Introduction Pain in Specific Developmental Disorders Autism Spectrum Disorder Cerebral Palsy Pain in Other Developmental Disorders Overview of Pain in Children with ASD/DD The Assessment and Management of Pain in Children with ASD/DD The Assessment of Pain in Children with ASD/DD The Management of Pain in Children with ASD/DD Pharmacological Management Physical Management of Pain Psychological Management of Pain Research Challenges in the Study of Pain Management in Children with ASD or DD Conclusion References 18: Overview of Physical Therapy for Children with Autism and Other Intellectual and Developmental Disabilities Introduction Initiating Physical Therapy Services The Physical Therapy Assessment Infants and Toddlers School Age Transition to Adult Care The Functional Approach to Diagnosis Treatment Planning Physical Therapy for Specific Disorders Developmental Disability A Brief Review of General Movements PT Treatment for Children with Developmental Delay Autism Spectrum Disorder Cerebral Palsy The Evaluation of CP The Treatment of CP Future Directions in PT References 19: Planning for Treatment of Children with Autism and Other Developmental Disabilities with the Child and Adolescent Psychiatrist Preparing for the Appointment How to Prepare a Family for a Referral What to Expect from the Initial Encounter with a Psychiatrist Components that Guide the Psychiatric Treatment Plan The Assessment Other Medical Disorders The Evolving Evaluation Advocating and Navigating the School System Telemedicine Psychiatry Coordinated Services Secondary Psychiatric Diagnoses Irritability in Autism Anxiety Disorders in ASD Attention-Deficit/Hyperactivity Disorder (ADHD) Disruptive Behavior Disorders Depression Obsessive-Compulsive Disorder (OCD) Psychosis and Schizophrenia Catatonia Akathisia Medication Management Antipsychotics Antidepressants Stimulants and Alpha-2 Agonists Antiepileptics Other Medications and Biological Treatments Buspirone Amantadine Melatonin Behavioral Therapies for ASD Limitations of ABA Therapy Other Psychotherapeutic Interventions for ASD Engaging Outside Supports References 20: Autism Spectrum Disorders: Treatments and Psychological Interventions Introduction Sam’s Journey Treatment Planning Early Intervention Programs Speech–Language Pathology Occupational Therapy Occupational Therapy for Children from Birth to 3 Years: Early Intervention Sensory Processing Disorder Feeding Issues and Neurodevelopmental Disorders Intensive Interventions Applied Behavioral Analysis (ABA) The Early Start Denver Model (ESDM) TEACCH Floortime Behavioral Assessment Wandering and Neurodevelopmental Disorders Referral for Co-occurring Development Concerns Treatment for Psychological Comorbidities Psychotherapy Intellectual Disability and ASD Learning Disabilities and ASD ADHD and Autism Spectrum Disorder Genetics Summary References 21: Occupational Therapy for Children with Autism Spectrum Disorder and Intellectual and Developmental Disability Introduction to Occupational Therapy Referral and Funding for Occupational Therapy Services Occupational Therapy Evaluation Vignette 1 – Matt – The Early Years – Mastering Feeding Matt – The Early School Years – Self-Care Skills Matt – The Teenage Years – Increasing Independence Occupational Therapy Intervention Vignette 2 – Tena – A Toddler at Risk for ASD Tena – The Early School Years – Increasing Challenges Tena – The Teenage Years – Self Advocacy References 22: Treating Sleep Disturbances in Children with Developmental Disorders Introduction Sleep Disturbances in Children with ASD Sleep Disturbances in Children with Internalizing Disorders Anxiety Mood Disorders Sleep Disturbances in Children with Externalizing Disorders Attention-Deficit Hyperactivity Disorder Night Wakings in ASD and Developmental Disabilities (DD) Disruptive and Aggressive Behaviors Comorbid Conditions Respiratory Conditions Vision Impairment Epilepsy Down Syndrome Craniofacial Abnormalities Gastroesophageal Reflux Disease Neuromuscular Disorders Rett Syndrome Angelman Syndrome Smith–Magenis Syndrome Tuberous Sclerosis Complex Williams–Beuren Syndrome Prader–Willi Syndrome Neoplasms of the Central Nervous System Delayed Sleep Phase Molecular Basis of Sleep Disturbances in Children with ASD Interventions for the Treatment of Sleep Disturbance Behavioral Interventions Pharmacological Interventions Melatonin and Related Medications Alpha-2 (α2) Agonists Antipsychotic Medications Antidepressants GABA Receptor Agonists Anti-epileptic Medications Cannabis Antihistamines Clinical Pearls Conclusion References 23: The Role of the SLP in the Evaluation and Treatment of Individuals with ASD and Other Neurodevelopmental Disorders Evaluation and Treatment/Intervention Planning Age Birth – Three Age 3–5 Elementary School Beyond Elementary (Adolescent/Adult) References 24: Urologic Care of Children with Autism Spectrum Disorders or other Neurodevelopmental Disorders Introduction Initial Observation and Patient History (A Urologist’s View) Review of Systems and Physical Exam Laboratory Testing Diagnostic Imaging Additional Urologic Tests A Review of Normal Toilet Training Treatments of Urologic Conditions Urinary Incontinence Enuresis Behavioral Therapy First-Line Therapy Second-Line Therapy Urinary Tract Infections Cryptorchidism and Hypospadias Common Urologic Conditions in Patients with Specific Neurodevelopmental Disorders Tuberous Sclerosis Complex Fragile X Syndrome Down Syndrome Neurofibromatosis Type 1 Prader–Willi Syndrome CHARGE Syndrome Rett Syndrome Spina Bifida Initial Evaluation: Management of Spina Bifida in Newborns and Infants Management of Spina Bifida During Childhood Management of Spina Bifida During Adolescence and Adulthood Reconstructive Surgery in Patients with Spina Bifida Clinical Pearls Bibliography 25: Treatment Planning for Transition to Adult Services Introduction Planning for Transition to Adult Heath Care The Cornerstone of Care: The Physician–Patient Relationship Welcoming Emerging Adults to Your Practice Understanding Emerging Adults Supported Decision Making and Medical Decision-Making Capacity with Emerging Adults Preparing Medical Staff to Welcome Emerging Adults Honing Communication Skills Preparing the Office to Welcome Emerging Adults Treatment Planning and Coordinating Care Anticipating Challenges to Care from Outside the Office Special Issues in the Treatment of Emerging Adults Substance-Related and Addictive Disorders Nicotine Products Gambling Disorder Gaming Disorder Addressing Sexuality with Emerging Adults Future Directions for the Transition of PLWD to Adult Medical Care References Index