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

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