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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

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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

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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 the Autism Speaks website. This diagnosis encompasses the DSM IV-TR’s diagnoses of Autistic Disorder, Asperger Syndrome, Pervasive Developmental 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 screening, increased availability of early intervention services, and potentially unknown biological factors.2 Despite evidence that early intervention for ASD can significantly improve patient outcomes4 and that ASD can be reliably diagnosed by 24 months of age,5,6 the average age of a child at diagnosis is 51 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 to these statistics, and females with ASD are generally identified to have more cumulative risk factors when diagnosed than their male peers.9 Females with ASD generally show more social behaviors than males 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

1 in 54 Children in the

US have ASD

51

months = Average age

of diagnosis

4:1 Ratio of M:F

diagnosed with

ASD

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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 with autism have an associated genetic syndrome that has been linked to their autism diagnosis. Examples include the following: Tuberous Sclerosis, Fragile X Syndrome, Neurofibromatosis, Angelman syndrome, and Rett Syndrome. Other genes have been identified as 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

• Short interpregnancy interval

• Multiple gestation

• Maternal obesity

• Gestational diabetes

• Fetal growth restriction

• Intrapartum hypoxia

• Prematurity or low birth weight

• Infections, such as cytomegalovirus and rubella

• Teratogen exposure, such as valproic acid 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

• ADHD

• Developmental delay secondary to severe neglect

• Reactive Attachment Disorder

• Post-Traumatic Stress Disorder (PTSD)

• Child abuse

• Childhood-onset schizophrenia

25% Of children with ASD

have an associated

genetic condition

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What does the presentation of ASD look like at different ages? 13

What are red flags for ASD? https://www.cdc.gov/ncbddd/autism/signs.html A person with ASD might: • Not respond to their name by 12 months of age • Not point at objects to show interest (e.g. point at an airplane flying over) by 14 months • Not play “pretend” games (e.g. pretend to “feed” a doll) by 18 months • Avoid eye contact and want to be alone • Have trouble understanding other people’s feelings or talking about their own feelings • Have delayed speech and language skills • Repeat words or phrases over and over (echolalia) • Give unrelated answers to questions • Get upset by minor changes • Have obsessive interests • Flap their hands, rock their body, or spin in circles

Video Tutorial: The Kennedy Krieger Institute has developed this video tutorial comparing video clips of toddlers with neurotypical development to toddlers who show early signs of ASD.

Infants and Toddlers Childhood Adolescence

• Atypical interest in objects • Limited functional use of

toys • Lack of imaginative play • Repetitive play • Lack of joint attention,

pointing, language, and nonverbal communication delay

• Learning difficulties • Behavior issues:

- Compulsive behaviors and rituals

- Aggression, tantrums, self-injury (often due to difficulty communicating)

• Anxiety related to transitions, routine changes, and increased social demands

• Safety concerns: elopement, self-injury, pica

• Psychiatric issues – many children meet criteria for ADHD

• Growing social differences, poor pragmatic skills, poor executive functioning, poor independence with activities of daily living

• Psychiatric issues comorbid: ADHD, anxiety and depression

• At risk for victimization

All Ages

• Communication deficits - Pragmatic (social) language deficits - Nonverbal communication deficits (decreased and atypical)

• Restricted Interests and Repetitive behaviors - Stereotyped and repetitive language, inflexible adherence to specific routines

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SCREENING The AAP recommends developmental surveillance at all well child visits; standardized developmental screening at the 9, 18, and 30 month well child visits; and standardized screening for autism at the 18 and 24 month well child visits. For a full list of current and emerging autism-specific screening tools, please see Table 6 in the 2020 AAP Clinical Report on Autism.2

The Modified Checklist for Autism in Toddlers (M-CHAT- R/F): The M-CHAT-R/F is a 20-item questionnaire that is validated for use in children ages 16-30 months. It is one of the most frequently used screening tools for autism. It can be completed by a caregiver in 5-10 minutes. There are clinician-administered follow-up questions for those scoring in the moderate risk category. Although initial validation studies demonstrated high sensitivity and specificity, some recent data calls that into question. A 2019 study showed much lower sensitivity (39%) and a positive predictive value of only 15%.14,15 While more accurate screening approaches are needed, there are several reasons to continue screening with a tool like the M-CHAT: it has a high positive predictive value for identifying developmental delay, it is likely still better than pediatrician developmental surveillance alone, and children who screen positive may be diagnosed earlier than those who screen negative.14 Remember that screening tests are not diagnostic tests and children may need to be referred for further evaluation regardless of what the screening test shows. Some suggested language a provider might use to discuss this with a family could include the following:

• Screen negative: “Although your child’s M-CHAT was negative, this test misses up to 60% of children with autism. If you have concerns (or given some of the behaviors you mentioned), I suggest we seek additional evaluation from a developmental specialist.”

• Screen positive: “Although your child’s M-CHAT was positive, there may still be a low chance that he/she has autism. I still suggest we refer to a developmental specialist because he/she may still need some additional support to stay on track.”

The M-CHAT is reproduced with permission on the following page. Additional information about scoring and follow-up questions can be found here.

Do I have to wait until the 18 month M-CHAT to refer a child if I have concerns about the child’s communication skills and possible ASD? No. For example, if you are seeing a 12 month old who is not responding to his name and has an older sibling with autism, it may be very appropriate to refer that child for evaluation for early intervention services and/or to a developmental specialist before they are old enough for the formal M-CHAT screening.

Billing for ASD Screening: Pediatric primary care providers can bill insurance for administration of the M-CHAT using the CPT code 96110: Developmental screening, with scoring and documentation, per standardized instrument. Note that if you administer an ASQ-3 and an M-CHAT during the same visit (e.g., the 18 month well child visit), you can bill CPT code 96110 and add “2” for number of units.

CPT Code:

96110

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DIAGNOSTIC EVALUATION If you have concern for autism, based on developmental surveillance and/or standardized screening, it is important to promptly refer the child for (1) early intervention and/or school-based services and (2) for a clinical diagnostic evaluation. The rationale for the prompt referral for early intervention and/or school-based services PRIOR TO THE FORMAL ASD DIAGNOSIS is two-fold. First, regardless of whether or not the child will end up with a formal diagnosis of ASD, early therapies targeting social communication skills will be an important component of that child’s treatment plan. Given the average wait-times of 3-24 months for a formal diagnostic evaluation, this early intervention should not be delayed. Secondly, there are some circumstances in which the early intervention program (e.g., Early Stages in DC) or the public school system will be able to assist with obtaining formal autism diagnostic testing and/or an educational designation of autism. See the appendix for a sample IEP request letter. Depending on the resources available to your patient based on location, age, and insurance status, you may refer him/her to a developmental behavioral pediatrician, a clinical psychologist, a neurologist, or a psychiatrist for further evaluation of your concern for ASD. For DC-specific referral resources, please see the ASD Diagnosis Flowchart and the CNH Autism and Neurodevelopmental Referral Guidelines.

The evaluation process and clinician conducting the evaluation of ASD may vary depending on if the child first presents with a developmental delay, or a medical diagnosis such as possible seizures. Comprehensive assessments of ASD and related comorbid difficulties including learning problems, language and cognitive profiling, and emotional-behavioral difficulties can be extensive, involving up to 12 hours of testing. A best practice diagnostic tool that assesses social functioning in a developmental context is the Autism Diagnostic Observational Schedule (ADOS), which is commonly used as part of the diagnostic process (see below for additional information on the ADOS).16 Diagnostic decision-making of ASD is complex, requiring specialized training and reliance on multidisciplinary teams to assess multiple areas of functioning during diagnostic evaluations. Example of components of specialized ASD diagnostic evaluation:

• Parent report o Parents participate in a comprehensive interview with the provider to share information about

the child’s birth, medical, developmental, and educational history as well as presenting concerns.

o Providers review parent report (and teacher report if relevant) from standardized questionnaires (e.g., Social Responsiveness Scale, Child Behavior Checklist, Communication and Symbolic Behavior Scales, etc.)

• Objective data o If available, providers review cognitive and developmental testing, speech-language

assessment, vision and hearing screenings, and/or genetic testing16

• Observation of the child o Standardized observations of the child are usually obtained using semi-structured play-based

assessments (e.g., Autism Diagnostic Observation Schedule, Childhood Autism Rating Scale, etc.)

o Along with the primary provider (usually a clinical psychologist), additional providers may also evaluate the child (e.g., Speech and Language Pathologist, Developmental Pediatrician, etc.)

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• Feedback o Feedback sessions may occur immediately after the evaluation, or within a few weeks of

testing in order to explain results of the evaluation, provide the diagnosis (if criteria are met) and share initial recommendations.

• Written Report: o Families often receive a formal report within a few weeks of the evaluation, with a full

summary of the evaluation and written recommendations. The report can often serve as documentation to support children in getting therapeutic services (e.g., through insurance or school).

Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) The ADOS-2 is a structured play evaluation containing multiple modules based on the developmental level of the child.17 The ADOS-2 is considered the current gold standard for autism diagnosis and is typically administered by a psychologist, developmental pediatrician, speech and language pathologist, or psychiatrist who has undergone ADOS-specific training. Autism Diagnostic Interview- Revised (ADI-R) The ADI-R is a structured interview conducted by a trained clinician with a parent or caregiver regarding their child’s language and communication, reciprocal social interactions, and repetitive behaviors and interests.18 This interview is used more in clinical research settings, and can provide information relevant to clinical diagnosis and educational needs. Can a general pediatrician diagnose a child with ASD? Although the gold standard autism diagnosis comes from a clinician with specialized diagnostic training, there may be a role for general pediatricians to make an initial clinical diagnosis, especially when the symptoms a child is displaying are highly indicative of autism. An early diagnosis may lead to faster initiation of therapeutic services for the child and may alter their long-term outcome. Most would agree that the child should also be referred to an autism specialist for a more comprehensive evaluation.

Does a child who has been classified as having ASD by the educational system still need to see a clinician within the health care system for an ASD evaluation? Early intervention specialists and educators use a system of identification based on federal education guidelines included in the Individuals with Disabilities Education Act (IDEA) of 2004. Local regulations (i.e., the DC Municipal Regulations), offer additional guidance in alignment with IDEA. A child may receive a multidisciplinary evaluation conducted through the school or the early intervention team that may potentially yield a classification of autism. This child should also be referred to see a clinician within the health care system for an ASD evaluation. Depending on the resources available to your patient based on location, age, and insurance status, you may refer him/her to a developmental behavioral pediatrician, a clinical psychologist, a neurologist, or a psychiatrist for further evaluation of your concern for ASD. For DC-specific referral resources, please see the ASD Diagnosis Flowchart and the CNH Autism and Neurodevelopmental Referral Guidelines. This clinical diagnosis of ASD is often critical for obtaining insurance authorization for specialized therapy like Applied Behavior Analysis (ABA) therapy. Please note that while the health care system is governed by Health Insurance Portability and Accountability Act (HIPAA) system when it comes to information sharing, the educational system is governed by the Family Education Rights and Privacy Act (FERPA).

AUTISM SCREENING IN PRIMARY CARE & REFERRAL ALGORITHM

Developmental Surveillance and Screening (Autism specific screening at 18 and 24 months)

Specific concern for Autism General developmental concern

Developmental concern identified (parent or provider) Or MCHAT abnormal

Or ASQ abnormal

Pre

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Re

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Po

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Age 0-3 Early Intervention: Strong Start (DC), Infants and Toddlers (MD) Plus one of the following:

• CNH Child Development Clinic (up to age 4)

• CNH Neurodevelopmental Pediatrics

• Center for Autism Spectrum Disorders at CNH

• DC Autism Clinic (CNH)

• Autism and Communication Disorders Clinic (Georgetown)

• HSC Pediatric Center

Age 3-5 Early Intervention: Early Stages (DC), Child Find (MD) Plus one of the following:

• CNH Neurodevelopmental Pediatrics

• Center for Autism Spectrum Disorders at CNH

• DC Autism Clinic (CNH)

• Autism and Communication Disorders Clinic (Georgetown)

• HSC Pediatric Center

Age 5-26 Special Education Services Plus one of the following:

• CNH Neurodevelopmental Pediatrics

• Center for Autism Spectrum Disorders at CNH

• DC Autism Clinic (CNH)

• Autism and Communication Disorders Clinic (Georgetown)

• HSC Pediatric Center

All Ages

• Audiology referral

• Consider specialty referrals as needed: • Neurology: if concerned for staring spells / seizures, abnormal neurologic exam • Genetics: if dysmorphic or family history of ASD (otherwise refer after ASD confirmed) • Ophthalmology: if poor eye contact or stereotypical behavior that involves the eyes

• Assess for safety concerns (e.g., wandering)

• Consider family support referral (e.g., social work, care manager, family/peer navigator)

• Coach family re: referrals/ waitlists, updating contact information

All Ages

• SSI/HSCSN

• Early Intervention/ Special Education- may add autism-specific services

• Therapies: ABA; consider SLP, OT/PT outside of early intervention/special education services

• Genetics

• Advocacy Support, Parent/Family Support

Refer to developmental specialist and intervention as appropriate

Ages 0-4 • CNH Child

Development Clinic • CNH

Neurodevelopmental Pediatrics

Ages >4 • Neurodevelopmental

Pediatrics

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EARLY INTERVENTION AND SCHOOL-BASED SERVICES All children with suspected or confirmed autism should be referred promptly for early intervention vs. school-based services. We will provide information about the laws and regulations for children with special needs and then provide DC-specific information about early intervention.

Individualized Family Services Plan (IFSP)

Individualized Education Plan (IEP) 504 Plan

Federal Regulation

Part C of the IDEA19 Part B of the IDEA19 Section 504 of the Rehabilitation Act of 1973 Antidiscrimination law20

What is it? Involves a multidisciplinary assessment of the child’s developmental needs in various domains (physical, cognitive, communication, social and emotional, adaptive), and addresses the family’s concerns and resource needs. Based on the needs assessment, the team formulates a description of services to be provided through early intervention and identifies measurable outcomes for the child.

Special education program that provides children with certain disabilities (including autism) a modified curriculum or instructions more adapted to their specific learning needs. Caregivers will receive progress reports of the child’s performance with his/her IEP. If a child has an IEP, he/she automatically qualifies for a 504 plan.

Section 504 is part of a law that bans discrimination against people with disabilities.

A student who qualifies under this law can get a 504 Plan. A 504 Plan lists the help and special services the student needs in school. May include

• Medical intervention/services (nursing)

• Behavior interventions

• Accommodations (e.g., increased time for test-taking, separate room)

• Modifications

• Transportation

• Services: OT, PT, ST, specialized instruction

Eligibility • Age: Birth to 3 years old

• Developmental Delay: Based on the state’s definition of developmental delay. For example, in DC, children with a developmental delay of 25% in one area (physical, cognitive, communication, social/ emotional, or adaptive development) would qualify.

• Ages 3-21, for students enrolled in public schools

• Child with a disability: an intellectual disability, hearing impairment, speech or language impairment, visual impairment, serious emotional disturbance , orthopedic impairment, autism, traumatic brain injury, “other health impairment”, specific learning disability, deaf-blindness, or multiple disabilities

• Child has disability and needs accommodations but does not require special education services (IEP)

• Child must have a physical or mental impairment that substantially limits one or more major life activities; a record of such an impairment; or are regarded as having such an impairment

• Condition does not have to be constant or permanent (e.g., migraine or temporary wheelchair while broken bone heals)

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Individualized Family Services Plan (IFSP)

Individualized Education Plan (IEP) 504 Plan

• Medical condition that is linked to or likely to result in developmental delay

• Diagnosis must have a significant educational impact to qualify as a disability – if not, may still be eligible for accommodations through Section 504

• Major life activities include learning, concentrating, reading, seeing, hearing, speaking, breathing, walking, caring for one’s self, and other basic life tasks

Evaluation Process

• IFSP Meeting must be held within 45 days of receipt of referral to Early Intervention (EI)

• EI services must start within 30 days of IFSP meeting

• Must be reviewed every 6 months and re-evaluated every 12 months

• Evaluation must occur within 60 days of when parental consent was obtained (see here for sample IEP request letter)

• Reevaluation must occur at least every 3 years

• Reviewed at least annually

• Individual school districts must establish standards and procedures for initial evaluations and periodic re-evaluations of students who need or are believed to need a 504 plan

• Periodic re-evaluation is required but specific intervals are not specified

Parental Requirements

Parental consent must be obtained for the child to receive services, and must attend annual meetings

Parental consent required and must attend meetings

Parental consent required. Parents not required to attend meetings.

Additional Info

Extended IFSP – child can continue to receive Part C early intervention services until the beginning of the school year following child’s 4th birthday. Alternatively, they can be transferred to public school-based services.

See appendix for parent handout on how to read an IEP from Children’s Law Center.

See appendix for parent handout on 504 plans from Children’s Law Center.

Behavior Intervention Plan (BIP)

BIPs are an important component of educational planning and arranging accommodations for children with ASD. First, a functional behavioral assessment (FBA) occurs to identify the antecedents, behaviors, and consequences to determine the function the behavior is trying to achieve. With the information from the FBA, a step-wise plan to address the behaviors can occur and is implemented through a BIP. Families can request the school perform an FBA.2

Eligibility cont’d

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Early intervention services provide vital resources to aid in the evaluation of developmental concerns for young children in addition to providing therapies to enhance a child’s development. Below is an explanation of the different services provided through Strong Start and Early Stages, which are for DC residents. In Maryland, the early intervention services are provided through Infants and Toddlers and Child Find (see resources section for more information).

Strong Start Early Stages

Run by Office of the State Superintendent of Education (OSSE), Division of Early Learning – Early Intervention Program

DC Public Schools- Special Education Program

Age Birth to 2 years 10.5 months. Referral can be made up to 45 days before child’s 3rd birthday

2 years 8 months to 5 years 10 months

Program’s Primary Focus Child’s developmental needs Child’s educational needs

Eligibility of Services • 25% delay in one or more area (communication, cognitive, physical, adaptive, social/emotional) •Informed clinical opinion •Automatic eligibility (genetic/neurological/metabolic disorders, prenatal exposure, sensory/motor impairments)

Child meets criteria for one of the 13 disability categories under IDEA, of which ASD is one.

Written Plan of Services IFSP (Individualized Family Service Plan) IEP(Individualized Education Program)

Location of Services Child’s natural environment School (least restrictive environment)

System of Payment No charge for services No charge for services

Referral** ** Very helpful to send any relevant developmental screenings such as ASQ/MCHAT

Anyone can refer (parent, teacher, physician, etc.) Phone: (202) 727-3665 Fax: (202) 724-7230 Email: osse.dceip@dc.gov Website: https://osse.dc.gov/service/strong-start-dc-early-intervention-program-dc-eip-information-families

Anyone can refer (parent, teacher, physician, etc.) Phone: (202) 698-8037 Fax: (202) 654-6079. Email: referrals@earlystagesdc.org Website: www.earlystagesdc.org *Referral form can be filled out online

Services provided Developmental evaluations, service coordination, OT, PT, ST, Developmental therapy. ABA for patients with autism (typically up to 10 hours per week maximum). *Note: Autism-specific screening/ diagnostic evaluations are NOT part of Strong Start services

Special education services including developmental therapies *Note: Autism-specific evaluations CAN be conducted by Early Stages/ DC Public Schools

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TREATMENT

This section outlines common therapies that can benefit children with ASD. Clinicians completing an ASD evaluation or who are otherwise a part of the child’s treatment team can provide referrals for these interventions. The goals of therapy include targeting core symptoms of ASD such as social communication deficits and repetitive and restricted interests, enhancing functional independence by improving adaptive skills, and reducing problem behaviors that may impact learning of adaptive skills.2 Treatment planning should include consideration of co-morbid conditions that frequently accompany ASD, such as feeding difficulties, sleeping difficulties, and inattention/hyperactivity. It is often beneficial to take a coordinated, interdisciplinary approach to addressing these concerns. For example, a child’s behavior therapist may address behavioral interventions to target comorbid concerns while the child’s pediatrician or psychiatrist may prescribe medication(s) that can supplement behavioral interventions when needed.

Therapeutic Modalities Applied Behavior Analysis (ABA) ABA is considered the gold standard treatment for ASD. It is considered an evidence-based best practice by the US Surgeon General and by the American Psychological Association. Recommendations from the AAP and National Research Council suggest that behavioral and communication approaches that provide structure, direction, and organization for the child and family are the most beneficial for treatment of children with ASD.21 ABA is one such intervention that can be individualized to each patient and addresses all domains to build positive behaviors to improve a variety of skills.21, 22 ABA is a flexible intervention that can be provided in various locations such as the home, school, or in the community.

The guiding principles of ABA are to increase positive behaviors and decrease negative behaviors using various methods of reinforcement. ABA typically focuses on improving skills related to communication, social abilities and daily living to promote independence. ABA also can assist with decreasing undesired and/or unsafe behaviors. ABA direct services are typically provided by registered behavior technicians (RBT) and overseen by board certified behavior analysts (BCBA or BCaBA). RBTs are required to have a minimum of two face-to-face contacts with the supervising BCBA/BCaBA per month (can be via videoconferencing). There are some school classrooms that utilize ABA methodology to supplement a child’s individual services and supports. The intensity and duration of treatment with ABA will depend on a child’s deficits and specific behavior challenges and are best determined by the professional behavior analyst. Focused ABA treatment is generally delivered at 10-25 hours per week of direct service and targets a limited number of behaviors (e.g., functional skills, problem behaviors). It often addresses behaviors that put the child and/or others at risk of harm. Comprehensive ABA treatment is generally delivered at 30-40 hours of direct service per week and targets multiple affected developmental domains including cognitive, communicative, social, emotional and adaptive functioning. Several studies have shown that high-intensity treatment leads to the largest gains23.

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Speech and Language Therapy For children with ASD, increased communication leads to decreased frustration, which can lead to improved behaviors. Interventions seek to improve core deficits in social and functional communication skills by increasing expressive, receptive, and pragmatic language. For ASD patients who are nonverbal or minimally verbal, consider a referral to speech therapist with expertise in treating children with ASD. The child may also benefit from an evaluation for the use of Augmentative and Alternative Communication (AAC) devices, such as Picture Exchange Communication System and speech-generating devices. Social Skills Training Social skills groups aim to improve social competence and friendship quality. They target impairments in use of nonverbal behaviors (eye contact, facial expression), promote development of appropriate peer relationships, and help with social and emotional reciprocity.12 These groups may be led by a speech language pathologist, psychologist, occupational therapist, BCBA, teacher, etc. Occupational Therapy Occupational therapy can help to address deficits in adaptive functioning and fine motor skills. The focus is often on enhancing sensory processing and social behavioral performance. They can also help with self-care (e.g., dressing, hygiene) and participation in play.

Medication There are no medications to treat the core symptoms of autism (social communication deficits and repetitive/restricted interests), but medications may be considered to help manage challenging behaviors (e.g. self-injurious behavior or aggression) or common comorbidities of autism, such as ADHD, depression, anxiety, OCD.21,24 Importantly, these psychiatric co-morbid conditions are present in 70-90% of children with ASD.2 When a child with ASD presents with new behavior concerns, it is important to first evaluate for any medical triggers such as constipation, infection, or pain. Unless there are significant safety concerns or other special circumstances, behavioral interventions should generally be implemented before medication for most behavioral concerns. Children with ASD are more sensitive to psychopharmacotherapy and more likely to have adverse effects than children without ASD. Additionally, with challenges in communication and emotion identification, it can be difficult to monitor side effects. If psychotropic medication is prescribed, it should be part of a comprehensive treatment plan. For a complete discussion of treatment of co-morbid psychiatric conditions, please see the 2020 AAP Clinical Report on Autism and the 2014 American Academy of Child and Adolescent Psychiatry Autism Practice Parameters.

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Complementary and Alternative Approaches Given that there are no medications that target the core symptoms of ASD, and parents are often hesitant to start their children on psychotropic medications, many seek complementary and alternative treatment options. It is always important to ask about these modalities as some are not evidence-based have been shown to be harmful to patients. For up-to-date information regarding safe uses of these approaches, please visit the National Center for Complementary and Integrative Health, Autism page.

BENEFICIAL

• Melatonin -- Sleep abnormalities are present in 40-86% of children with ASD, and can contribute to worsening behaviors. Multiple double-blind randomized control trials have demonstrated efficacy of melatonin compared to placebo in improving sleep onset latency and sleep duration. It has also been shown to improve daytime behaviors. It is generally believed to be safe and well-tolerated, at least in the short to medium-term. Research into long-term safety is ongoing.25,26,27,28

POSSIBILY NEUTRAL

• Special diets (Gluten-free casein free) – This is the most common alternative treatment used in the ASD population29, but studies have not conclusively shown improvement in patients’ behavioral symptoms on this diet.2 These diets have unclear benefits and may lead to nutrient and vitamin deficiencies, lower weight and BMI, and further social isolation and stigmatization due to differing diet. They are also associated with increased costs.30,31 It is recommended that families pursuing special diets receive nutritional counseling.2

• Dietary supplements – Commonly used dietary supplements include vitamin D, vitamin B12, vitamin B6 with magnesium, omega-3 fatty acids, and multivitamins. There is no conclusive evidence that children with ASD require nutritional supplementation and no studies identifying the long-term impact of high doses of these supplements.2

HARMFUL- COUNSEL FAMILIES AGAINST THESE TECHNIQUES

• Chelation – This is based on the theory that autism is caused by heavy metal toxicity. There is no benefit of these therapies for treating the symptoms of autism and chelation can lead to hypertension, hypotension, cardiac arrhythmias, and hypocalcemia (which has resulted in death).24,32

• Hyperbaric Oxygen Therapy (HBO2) – This is based on the theory that oxidative stress contributes to development of ASD.32 Only one study showed significant improvement on clinical and behavior scales, whereas all other studies did not have significant findings.33 Importantly, serious side effects include central nervous system oxygen toxicity leading to seizures and ear barotrauma.32

• Secretin – This is based on case studies that showed improvement of eye contact, alertness, and language after patients were given secretin during an endoscopic procedure. In a systematic review of 16 randomized controlled trials, there were no statistically significant results regarding improvement in autism outcome measures, and there were many adverse effects (increased hyperactivity and aggression, flushing, vomiting).34

NOT ENOUGH EVIDENCE:

• Cannabidiol – Families may ask about the use of cannabis products such as cannabidiol (CBD) for the treatment of autism symptoms or its associated conditions. Anecdotally, families may report in online communities about the benefits of CBD in relieving behavioral

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symptoms, in particular self-harm behaviors. Furthermore, studies in adults have shown that CBD is well-tolerated. However, there is currently an absence of high-quality studies in children with autism to assess either (1) effectiveness of CBD for treating autism-related symptoms or (2) safety / tolerability of CBD in children. There is recent evidence that CBD may decrease seizures in patients with genetic syndromes closely related to autism. Side effects noted in that study were somnolence, loss of appetite, and diarrhea. As with any treatment decision-making process you may enter into with families, it is important to weigh the available evidence of risks and benefits and how that aligns with patient/family circumstances and preferences. Additional considerations would be the cost associated with CBD as well as the potential to “distract” a family from other treatment approaches with a stronger evidence base.35,36 Furthermore, given that children with ASD have an elevated risk of psychosis and marijuana has been linked to increased conversion rate to psychosis, there is a theoretical risk of CBD further increasing the risk of psychosis in children with ASD. There are randomized control trials underway for use of CBD in children with autism so more information will likely be available soon.

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SUPPLEMENTAL SECURITY INCOME AND INSURANCE One of the major barriers families face in receiving services for their children with ASD is obtaining coverage for necessary therapies such as Applied Behavior Analysis (ABA). It is important to counsel families on how to navigate this system. The social workers at your clinic may be able to help, and there is some basic information below, mostly specific to DC residents. Families of children with an autism diagnosis may be eligible for both supplemental security income (SSI) and supplemental insurance (HSCSN- Health Services for Children with Special Needs for families within the District). Children with a diagnosis of ASD should be able to receive ABA therapy through their current insurance while awaiting HSCSN approval. It can be helpful to connect with a care manager within their insurance company to navigate among the specific ABA providers with whom they contract.

What is SSI? SSI makes monthly payments to people with low income and limited resources who have disabilities. Children younger than 18 can qualify if they have a medical condition or combination of conditions that meet Social Security’s definition of disability for children and if the family’s income and resources fall within the eligibility limits. When families apply for SSI payments for their child based on a disability, they will be asked for detailed information about the child’s medical condition and about how it affects the child’s ability to perform daily activities. They will also be asked for permission to receive information from the doctors, teachers, therapists, and other professionals who have information about the child’s condition. Families should bring medical and school records when they meet with a Social Security representative. Social security may also schedule the child for an independent evaluation with a medical provider outside of the child’s existing care team. Criteria for SSI eligibility for ASD can be found here: Autism spectrum disorder for children age 3 to attainment of age 18, satisfied by A and B: A. Medical documentation of both of the

following: a. Qualitative deficits in verbal

communication, nonverbal communication, and social interaction; and

b. Significantly restricted, repetitive patterns of behavior, interests, or activities.

B. Extreme limitation of one, or marked limitation of two of the following areas of mental functioning: a. Understand, remember, or apply

information. b. Interact with others. c. Concentrate, persist, or maintain pace. d. Adapt or manage oneself.

How do families apply? There are 3 ways you can start a SSI application:

1. Online: https://www.ssa.gov/benefits/disability/apply-child.html 2. Phone: 1-800-772-1213 3. In person at any one of 3 locations:

• 2041 MLK Jr. Avenue SE, Washington, DC 20020;

• 2100 M Street NW, Washington, DC 20037;

• 1905-b 9th Street NE, Washington, DC 20018

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What is CASSIP? How is it related to HSCSN? DC’s Child and Adolescent Supplemental Security Income Program (CASSIP) provides complete medical care for children and young adults with disabilities and complex medical needs. Health Services for Children with Special Needs, Inc. (HSCSN) is a DC Medicaid insurance plan under the CASSIP authority. HSCSN provides coverage for doctors’ visits, hospitalizations, therapies, equipment, medications, home health (pending approval) as well as transportation to/from appointments, a dedicated case manager, and respite services. To qualify a child must be: • Under 26 years of age • Washington, DC resident • Have a SSI qualifying disability (Note: they do not need to meet income eligibility requirements for

SSI) If the child is already in a DC Medicaid plan and is approved for SSI, the family can call 202-467-2737 and request enrollment into HSCSN in order to receive its additional benefits and supports. For families who already have Medicaid, providers may complete a CASSIP application and send to the Department of Healthcare Finance (DHCF) to enroll the child in HSCSN. The process for enrollment in HSCSN has undergone some changes in recent years. If a family is struggling to make this transition to HSCSN, consider referring them to the Children’s Law Center for assistance.

What is TEFRA/ Katie Beckett Waiver? 1. DC Residents who do not qualify for Medicaid, may still receive Medicaid (HSCSN or Fee-For-Service)

through the Tax Equity and Fiscal Responsibility Act (TEFRA)/Katie Beckett Eligibility Pathway. The patient/family must first apply for DC Medicaid through DC Health Link (making sure to indicate on the application that the child as a disability) and be determined over-income for the Medicaid program.

2. When their application for DC Medicaid is denied based on income and there is an indication that the child has a disability, they will be mailed a TEFRA/Katie Beckett Application Packet for the child.

3. The completed TEFRA/Katie Beckett application, Pediatric Level of Care Determination Form, and other supporting documents (IEP/IFSP, diagnostic reports, therapy assessments, etc.) should be sent by email or postal mail to the Division of Children’s Health Services at the Department of Health Care Finance (see below for contact information).

4. Questions can be directed to Department of Health Care Finance Division of Children’s Health Services Attn: TEFRA/Katie Beckett Coverage Group 441 4th Street, N.W, 9th Floor Washington, DC 20001 (202) 442-5957 Email address: HealthCheck@dc.gov

5. For more information, see here

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What if the family may not qualify for SSI based on their income? Should they still apply for SSI on behalf of their child with ASD? If a family already has Medicaid, they will still need to apply for SSI to get the denial letter to show that the child was denied due to income limits and not medical criteria. This needs to be included in the CASSIP application to DHCF to get HSCSN. If the family does not have Medicaid (due to being over income) or SSI, then they would not need to apply for SSI, and would instead complete the process for the TEFRA/Katie Beckett Waiver. See appendix for a parent handout with more information to provide families about SSI and insurance.

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LOCAL RESOURCES Clinical Resources Children’s National Hospital: CNH maintains an online referral guide for the various clinics providing ASD services. Click on the image to link to autism specific resources. Child and Adolescent Mental Health Resource Guide. The DC Collaborative for Mental Health in Pediatric Primary Care updates this guide on a quarterly basis. For a list of resources in the District of Columbia for children with ASD and developmental disabilities go to the DC Mental Health Resource Guide and select the “Developmental Delay” filter. This contains clinical resources for autism diagnosis and treatment, early intervention services, ABA, etc. Families should always be encouraged to contact their insurance plans to find additional resources such as for speech therapy, occupational therapy, etc. Click on the image at right to link to the guide.

Resources for Parents Wandering Resources: Wandering is a major safety concern for children with autism and developmental disabilities. These websites provide useful information for parents to take appropriate safety precautions:

• https://www.healthychildren.org/English/health-issues/conditions/Autism/Pages/Autism-Wandering-Tips-AAP.aspx

• Emergency Plan: http://awaare.nationalautismassociation.org/wp-content/uploads/2014/07/FWEP.pdf

Local Activities:

• Smithsonian’s Morning at the Museum https://www.si.edu/access/matm: Morning at the Museum is a free sensory-friendly program for families of children with disabilities. Programs are scheduled on specific Saturday or Sunday mornings throughout the year at various Smithsonian museums. Each program consists of providing pre-registered families early entrance, facilitated activities, pre-visit materials, and a take a break space.

• Kids in Action www.hschealth.org/kidsinaction: an adaptive sports and social activities program for children and young adults with disabilities and their siblings.

• Kids Enjoy Exercise Now (KEEN) of Greater DC-Baltimore www.keengreaterdc.org: KEEN provides one-to-one sports and recreational opportunities for children and young adults with developmental and physical disabilities at no cost to their families or caregivers.

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Helpful websites:

• Autism Speaks Resource Guide: https://www.autismspeaks.org/resource-guide

• Autism Speaks 100 Day Toolkit: https://www.autismspeaks.org/tool-kit/100-day-kit-young-children

• DC Child & Adolescent Mental Health Resource Guide: www.dchealthcheck.net/resources/healthcheck/mental-health-guide.html

• Pathfinders for Autism: https://pathfindersforautism.org/autism-by-age/birth-5/

• Parent Encouragement Program: PEPparent.org

• Association of Science in Autism Treatment: https://asatonline.org/

• Autism Navigator: https://autismnavigator.com/

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Parent Support Organizations:

Parent Support Organizations

Parent Training and Information Centers

Protection and Advocacy

DC DC Autism Parents (DCAP) • Advocates for Justice and Education - provides parent training, review of IEPs, peer support, assistance with insurance applications (202-678-8060)

• DC Advocacy Partners

• Disability Rights DC at University Legal Services

• Quality Trust for Individuals with Disabilities – legal representation and supported decision-making, 202-448-1450, info@dcqualitytrust.org

• Children’s Law Center 202-467-4900– provides legal representation for education, SSI, adult guardianship, Medicaid denials, housing conditions

• DC Office of the Ombudsman for Public Education, 202-741-0886, om.budsman@dc.gov

MD • Autism Society of America (ASA) Montgomery County Chapter

• Autism Spectrum Support Group of Southern Maryland

• Howard County Autism Society

• Pathfinders for Autism –All Maryland

• Partnership for Extraordinary Minds (xMinds) - Montgomery County

• One World Center for Autism (OWCA) - Prince George’s County

• Parents Place of Maryland

• Disability Rights MD

VA • Autism Society of Northern Virginia (ASNV)

• Parents of Autistic Children of Northern Virginia (POAC-NoVA)

• Parent Educational Advocacy Training Center (PEATC)

• Disability Law Center of VA

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DISTRICT OF COLUMBIA EARLY INTERVENTION

Entry Point for children up to age 3:

Strong Start -DC Early Intervention Program 1371 Harvard Street NW, Washington, DC 20009

Tel:(202) 727-3665(Child Find Line) Fax: (202) 724-7230 Email: osse@dc.gov www.osse.dc.gov

Service for children after age 3:

Early Stages Center Office of Special Education DC Public Schools Walker-Jones Location

1125 New Jersey Avenue, NW Washington, DC 20001

Tel:(202) 698-8037

Fax:(202) 535-1008 Email: info@earlystagesdc.org www.earlystagesdc.org Minnesota Avenue Location 4058 Minnesota Ave NE, Suite 1500 Washington, DC 20019 Phone: 202-442-7201 Fax: 202-654-6079

Early Head Start: service for low-income children under age 3 Head Start: service for low-income children over age 3 Main office: 330 C Street, SW, Washington, DC, 20201 Tel: (202)-698-1033 Find an Early Head Start and Head Start Locator in DC near you: https://eclkc.ohs.acf.hhs.gov/center-locator

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MARYLAND EARLY INTERVENTION

Local Infants and Toddlers (age 0-3)

Program Main Office:

Pam Miller, Part C Coordinator

Div. of Early Intervention and Special

Education Services

200 West Baltimore Street, 9th Floor

Baltimore, MD 21201

Phone: (410) 767-1019

Fax: (410) 333-8165

Email: pamela.miller@maryland.gov

Website:

http://marylandpublicschools.org/progr

ams/Pages/Special-

Education/MITP/index.aspx

Local Infants and Toddlers Program by County: Baltimore County Paula Boykin 105 W. Chesapeake Ave, 4th Floor Baltimore MD 21204 (Main) 443-809-2169 Email - pboykin@bcps.org Frederick County Lisa Jarboe 350 Montevue Lane Frederick MD 21702 (Main) 301-600-1612 Email - ljarboe@frederickcountymd.gov Howard County Jennifer Harwood 8930 Stanford Blvd. 2nd Floor Columbia MD 21045 (Main) 410-313-7017 Email - jennifer_harwood@hcpss.org

Child Find (age 3+) Office:

2300 Belleview Ave Cheverly, MD 20785 301-925-6600 Fax - 301-925-6600

**Can also contact local school for more information Baltimore County 443-809-3017 Frederick County 301-644-5276 or 5296 Howard County 410-313-7046 Montgomery County 301-947-6080 ChildFind@mcpsmd.org Prince George’s County Ages 3-5: 301-925-6600 Ages 6+: 301-618-8300 Early Head Start: service for low-income children under age 3

• Baltimore: (410) 248-0372

• Montgomery: (301) 543-8040 or (301) 840-3271

• Prince George’s: (301) 937-1700 Head Start: service for low-income children over age 3

• Baltimore County: (410) 248-0372

• Frederick: (301) 600-1024

• Howard: (410) 313-6443

• Prince George’s: (301) 408-7100 Find an Early Head Start and Head Start Locator near you: https://eclkc.ohs.acf.hhs.gov/center-locator

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REFERENCES

1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. American Psychiatric Association

2. Hyman, S.L., Levy, S.E., Myers, S.M. Identification, Evaluation, and Management of Children With Autism Spectrum Disorders. Pediatrics. 2020;145(1):e20193447. doi:DOI: https://doi.org/10.1542/peds.2019-3447

3. Maenner, M.J. et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveill Summ. Published online 2020.

4. Zwaigenbaum L, Bauman ML, Choueiri R, et al. Early Intervention for Children With Autism Spectrum Disorder Under 3 Years of Age: Recommendations for Practice and Research. Pediatrics. 2015;136:560-581.

5. Lord, C., Risi, S., DiLavore, P.S. et al. Autism From 2 to 9 years of Age. Archives of General Psychiatry. 2006;63(6):694-701.

6. Guthrie, W., Swineford, L.B., Nottke, C., Wetherby, A.M. Early diagnosis of autism spectrum disorder: Stability and change in clinical diagnosis and symptom presentation. Journal Child Psychology and Psychiatry. 2013;54(5):582-590. doi:doi:10.1111/jcpp.12008

7. Baio, J. et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ. Published online 2018.

8. Durkin, M., Maenner, M., Baio, J., Chistensen, D., Daniels, J., Fitzgerald, R., et al. Autism Spectrum Disorder Among US Children (2002-2010): Socioeconomic, Racial, and Ethnic Disparities. American Journal of Public Health. 2017;107(11):118-1826. doi:doi: 10.2105/AJPH.2017.304032

9. Halladay, A.K., Bishop, S., Constantino, J.N., Daniels, A.M., Koenig, K., Palmer, K., Messinger, D., Pelphrey, K., Sanders, S.J., Tepper Singer, A., Lounds Taylor,Ju. & Szatmari, P. Sex and gender differences in autism spectrum disorder: summarizing evidence gaps and identifying emerging areas of priority. Molecular Autism. 2015;6(36):1-5.

10. Harrington, J.W. & Allen, K. The Clinician’s Guide to Autism. Pediatrics in Review. 2014;35(2):62-78.

11. Szatmari, P., Chawarska, K., Dawson, G., Georgiades, S., Landa, R., Lord C6, Messinger, D.S., Thurm, A., Halladay, A. Prospective Longitudinal Studies of Infant Siblings of Children With Autism: Lessons Learned and Future Directions.

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12. Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracken, J., State, M., & the American Academy of Child and Adolescent Psychiatry Committee on Quality Issues. Practice Parameter for the Assessment and Treatment of Child and Adolescents with Autism Spectrum Disorder. Journal of the American Academy of Child and Adolescent Psychiatry. 2014;53(2).

13. Klaiman, C., Fernandez-Carriba, S., Hall, C., Saulnier, C. Assessment of Autism Across the Lifespan: A Way Forward. Current Developmental Disorders Reports. 2:84-92.

14. Guthrie, W., Wallis, K., Bennett, A., Brooks, E., Dudley, J., Gerdes, M., Pandey, J., Levy, S.E., Schultz, R.T., Miller, J.S. Accuracy of Autism Screening in a Large Pediatric Network. Pediatrics. 2019;144(4):e20183963.

15. Zwaigenbaum, L. & Maguire J. Autism Screening: Where Do We Go From Here? Pediatrics. 2019;144(4).

16. Huerta, M., Lord, C. Diagnostic evaluation of autism spectrum disorders. Pediatric Clinics of North America. 2012;59(1):103-xi.

17. Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., Bishop, S. Autism Diagnostic Observation Schedule, Second Edition. Western Psychological Services; 2012.

18. Rutter, M., LeCouteur, A., Lord, C. Autism Diagnostic Interview- Revised. Western Psychological Services; 2003.

19. Individuals with Disabilities Education Act. Vol 20.; 2004. Accessed May 1, 2020. https://sites.ed.gov/idea/statute-chapter-33

20. Section 504 of the Rehabilitation Act. Vol 29.; 1973. Accessed May 1, 2020. https://legcounsel.house.gov/Comps/Rehabilitation%20Act%20Of%201973.pdf

21. National Center on Birth Defects and Developmental Disabilities. Treatment and Intervention Services for Autism Spectrum Disorder. Centers for Disease Control and Prevention Accessed May 1, 2020. https://www.cdc.gov/ncbddd/autism/treatment.html

22. Howard, J.S., Stanislaw, H., Green, G., Sparkman, C.R., Cohen, H.G. Comparison of behavior analytic and eclectic early interventions for young children with autism after three years. Research in Developmental Disabilities. 2014;35(12):3326-3344.

23. Behavior Analyst Certification Board. Clarificants Regarding Applied Behavior Analysis Treatment of Autism Spectrum Disorder: Practice Guidelines for Healthcare Funders and Managers. 2nd ed. https://www.bacb.com/wp-content/uploads/Clarifications_ASD_Practice_Guidelines_2nd_ed.pdf

24. DeFillippis M. The Use of Complementary Alternative Medicine in Children and Adolescents with Autism Spectrum Disorder. Psychopharmacology Bulletin. 2018;15(48(1)):40-63.

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25. Rossignol, D.A. & Frye, R.E. Melatonin in autism spectrum disorders: a systematic review and meta-analysis. Developmental Medicine and Child Neurology. 2011;53:783-792.

26. Malow, B.A., Findling, R.L., Schroder, C.M., Maras, A., Breddy, J. , Nir,T. , Zisapel, N., & Gringras, P. Sleep, Growth, and Puberty After Two Years of Prolonged-Release Melatonin in Children With Autism Spectrum Disorder. Journal of the American Academy of Child and Adolescent Psychiatry. Published online 2020. doi:https://doi.org/10.1016/j.jaac.2019.12.007

27. Parker, A., Beresford, B., Dawson, V., Elphick, H., Fairhurst, C., Hewitt, C., Scantlebury, A., et al. Oral Melatonin for Non-Respiratory Sleep Disturbance in Children with Neurodisabilities: Systematic Review and Meta-Analyses. Developmental Medicine and Child Neurology. 2019;61(8):880-890. doi:https://doi.org/10.1111/dmcn.14157

28. Buckley, W., Ashura, D.H., Oskoui, M., Armstrong, M.J., Batra, A., Bridgemohan, C., Coury, D., et al. Practice Guideline: Treatment for Insomnia and Disrupted Sleep Behavior in Children and Adolescents with Autism Spectrum Disorder: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology. 2020;94(9):392-404. doi:https://doi.org/10.1212/WNL.0000000000009033

29. Surette, S. & Vohra, S. Complementary, Holistic, and Integrative Medicine: Utilization Surveys of the Pediatric Literature. Pediatrics in Review. 35(3):114-128.

30. Mari-Bauset, S., Zazpe, I., Mari-Sanchis, A., Llopis-Gonzaelz, A., Morales-Suarez-Varela, M. Evidence of the Gluten-Free and Casein-Free Diet in Autism Spectrum Disorders: A Systematic Review. Journal of Child Neurology. 2014;29(12):1718-1727.

31. Mari-Bauset, S., Llopis-Gonzalez, A., Zazpe, I., Mari-Sanchis, A., Suarez-Varela, M.M. Nutritional Impact of a Gluten-Free Casein-Free Diet in Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 2016;46:673-684.

32. Politte, L.C., Howe, Y., Nowinski, L., Palumbo, M., McDougle, C.J. Evidence- Based Treatments for Autism Spectrum Disorder. Current Treatment Options in Psychiatry. Current Treatment Options in Psychiatry. 2(38-56).

33. Rossignol, D.A., Rossignol, L.W. Smith, S., Schneider, C., Logerquist, S., Usman, A., Neubrander, J, Madren, E.M., Hintz, G., Grushkin, B., Mumper, E.A. Hyperbaric Treatment for children with autism: a multicenter, randomized, double-blind, controlled trial. BMC Pediatrics. 9(21):1-15.

34. Williams, K., Wray, J.A., Wheeler, D.M. Intravenous secretin for autism spectrum disorders. Cochrane Database of Systematic Reviews. 4:1-50.

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35. Duvall, S.W., Lindly, O., Zuckerman, K., Msall, M.E., & Weddle, M. Ethical Implications for Providers Regarding Cannibis Use in Children with Autism Spectrum Disorders. Pediatrics. 2019;143(2). doi:https://doi.org/10.1542/peds.2018-0558

36. Barnes, G. Is there research on the use of cannabis products with children with autism? Published May 31, 2019. Accessed May 29, 2020. https://www.autismspeaks.org/expert-opinion/there-research-use-cannabis-products-children-autism

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ACKNOWLEDGEMENTS

This toolkit was made possible through significant contributions of time from our partners at Children’s National Hospital and George Washington University School of Medicine and Health Sciences. We are especially grateful for the major contribution from Elyssa Sham and Sarah Bernstein, two medical students who generously volunteered their time to conceptualize the layout, pull together the most up-to-date sources on caring for children with autism, and work diligently with CNH and community partners to refine the content. We would like to also thank the following individuals from CNH for their invaluable contributions: Lee Beers, Leandra Godoy, Serene Habayeb, Amanda Hastings, Melissa Long, Yetta Myrick, Alison Page, Kelly Register-Brown, Olivia Soutullo, and Pennie Theodorou. We also thank Evan Cass from the Children’s Law Center for sharing several important resources around educational support for children with autism.

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APPENDICES

Appendix A: Request for IEP letter

Appendix B: Parent resource handout

Appendix C: Children’s Law Center handouts

Early Intervention

Reading Your Child’s IEP

504 plans

REQUEST FOR EVALUATION BY PUBLIC SCHOOLS

Date: ________________ Dear School Official: I am writing to request that my child be evaluated for special education services. I am worried that my child is not doing well in school and may need special help. This request is made in accordance with Federal Laws, to include (1) Section 504 of the Rehabilitation Act of 1973 and (2) the Individuals with Disabilities Education Act (IDEA, Public Law 105-17) of 1997. Specifically, I am concerned because ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ By signing below, I understand that I am giving you written permission to have my child tested. However, I would like to know about the tests, the process, and when this can be done. I would be happy to talk with you or another school official about my child. You may send information to me at the address below or call me at the number listed below. I am keeping a copy of this request for my records. I also request a copy of the information for parents that you have about the evaluation process and appeals process. Sincerely, _________________________________ _______________________________ Signature of Parent or Guardian Child’s First and Last Name _________________________________ ________________________________ Address Name of School _________________________________ ________________________________ City, State, Zip Code Teacher’s Name/Grade _________________________________ Telephone Number

Parent Handout Your child has been diagnosed with an Autism Spectrum Disorder (ASD). This disorder encompasses what was previously referred to as Asperger’s Syndrome, Pervasive Developmental Disorder, and Autistic Disorder or Autism. ASD is a neurodevelopmental disorder that can impact multiple parts of a child’s development. Every child with ASD has different strengths and weaknesses. Children who have ASD often have difficulty with social communication skills (which can be both verbal and nonverbal). Children with ASD also often have repetitive behaviors or restricted interests. There are many therapies and services available to help build upon your child’s strengths and support them in areas that may be challenging. The following resources and referrals are available to you and your child:

Therapy Referrals ❑ Applied Behavior Analysis – This type of therapy is highly recommended for many

children with ASD. The goal is to improve your child’s ability to learn and function in their environment. There are various forms of ABA therapy, and they all work to increase positive behaviors and decrease negative behaviors using different strategies that motivate your child. Ideally, if you are using an ABA program, your child should receive _____ hours of ABA (either at home or at daycare/school)

❑ If your child is under 3 years old, he/she may be eligible to receive ABA through Strong Start

❑ Call your insurance company to find ABA therapists. If you are having difficulty accessing ABA services, our social worker Alison Page ( ) can provide assistance.

❑ Speech therapy – This type of therapy helps children who have delays in speech and language skills or difficulties with social communication. A speech and language pathologist specializes in speech, feeding problems, and can work with your child to improve both spoken and non-spoken communication.

❑ HSC Pediatric Center (202-635-5580) ❑ National Speech and Language Therapy Center (202-570-4185) ❑ University of the District of Columbia- Speech and Hearing Clinic (202-274-

6161 – Main, 202-274-6157 – Intake) ❑ Conaboy and Associates (202-544-2320) ❑ Other: ________________________________________________

❑ Occupational therapy (OT) – This type of therapy can help your child with fine motor skills necessary for self-care (e.g., getting dressed, using utensils), participation in school activities, and difficulties with sensory stimulation (e.g., certain textures or noises)

❑ Children’s National Physical Medicine & Rehabilitation (202-476-3094) ❑ Coastal Healthcare (202-525-1641) ❑ Connections Therapy Center (301-577-4333) ❑ HSC Pediatric Center (202-635-5580) ❑ Skills on the Hill (202-544-5439) ❑ Other: ________________________________________________

❑ Physical therapy (PT) – This type of therapy specializes in helping children with gross motor skills (e.g., running), range of movement, and physical coordination

Specialty Referrals through Children’s National Hospital ❑ Hearing and Speech Center– provides testing/treatment for hearing concerns. Most children with ASD need a careful hearing test (more than can be

done in the pediatrician’s office). Provides initial speech and language evaluations and short-term therapy. Also provides evaluation for Augmentative and Alternative Communication devices.

202-476-5600

❑ Neurology - assess for potential neurological concerns often associated with autism, such as seizures 202-476-2120

❑ Genetics and Metabolism – The American Academy of Pediatrics recommends genetic screening as some children with ASD have an associated genetic cause, and siblings of children with ASD are at increased risk of having ASD. Your doctor may recommend an evaluation by a geneticist if your child has other features of a genetic disorder, or to help with future family planning.

202-476-2187

❑ Center for Autism Spectrum Disorders* – provides comprehensive ASD evaluation and neuropsychological testing for ages 1-26 301-765-5432

❑ Neurodevelopmental Pediatrics* - provides medical evaluation and follow-up for children with neurodevelopmental concerns including ASD, developmental delay, ADHD, intellectual disability, speech language delay, and disruptive behavior disorders

202-476-5764

❑ Child Development Clinic* – provides comprehensive developmental evaluation for children ages 0-3 (including ASD and developmental delay) 202-476-5405

❑ Psychiatry and Behavioral Sciences* - children with ASD may benefit from medication to address behavior and emotional concerns often associated with ASD. A child psychiatrist can prescribe such medication and a child psychologist can provide behavioral therapy or additional supports.

202-476-5980

❑ Sleep Medicine – children with ASD often have issues with sleep and may benefit from further evaluation and treatment. 202-476-2128

* To make the visit as efficient and helpful as possible please bring prior records of psychological or educational testing, IEP or IFSP (school forms), early intervention reports, etc.

Early Intervention and Special Education Services Your child may qualify for therapeutic +/or educational support services through early intervention or the public school system.

DC ❑ Strong Start (0-2 years 8 months) – provides evaluations and therapies in your child’s natural environment (i.e., at home), to include: development of an Individualized Family Services Plan (IFSP), developmental evaluations, hearing and vision services, speech therapy, PT/OT, service coordination, and developmental therapy

202-727-3665, osse.dceip@dc.gov

❑ Early Stages (ages 2 years 8 months- 5) – identifies, evaluates, and recommends therapy and special education services for children, aids in the transition process into preschool, and works to develop an Individualized Education Plan (IEP) for your child

202-698-8037, referral@earlystagesdc.org

❑ DCPS Neighborhood Schools (ages 3-21)– for students enrolled in DCPS for school contact info, please visit profiles.dcps.dc.gov

❑ Centralized IEP Support (ages 5y10m – 21) – provides support for children who attend private or religious schools or who are home- schooled in DC

dcps.childfind@dc.gov or 202-442-5475

Insurance Now that your child has a diagnosis of ASD, you may be eligible for supplemental income through SSI (Supplemental Security Income) and insurance through HSCSN (Health Services for Children with Special Needs). You may need this additional insurance to cover ABA therapy. Our social worker Alison Page can help you through this process. ❑ If you already have

Medicaid or are eligible for Medicaid :

1. Apply for SSI which makes monthly payments to people with disabilities who have a low income or limited resources. You will need your child’s medical and school records indicating that your child has a medical condition (i.e., ASD) that qualifies as a social security disability.

Online: https://www.ssa.gov/benefits/disability/apply-child.html Phone: 1-800-772-1213 In person: 2041 MLK Jr. Avenue SE, Washington, DC 20020; 2100 M Street NW, Washington, DC 2003; or 1905-b 9th Street NE, Washington, DC 20018

2. After you receive SSI approval you will be eligible to apply for HSCSN. HSCSN is a DC Medicaid insurance plan that provides complete medical care for children and young adults with disabilities and complex medical needs. HSCSN provides coverage for doctors’ visits, hospitalizations, therapies, equipment, medications, home health (pending approval) as

HSCSN Enrollment Coordinator 202-467-2737 or 1-866-937-4549

well as transportation to/from appointments, a dedicated case manager, and respite services.

❑ If you already have private insurance –

If you do not qualify for Medicaid, you may still receive HSCSN for your child through the Tax Equity and Fiscal Responsibility Act/Katie Beckett Waiver (DC Residents only) https://dhcf.dc.gov/service/tax-equity-and-fiscal-responsibility-act-tefrakatie-beckett

1. You must first apply for DC Medicaid. If your application is denied based on income, you will be mailed a TEFRA/ Katie Beckett Application

Apply online: https://dchealthlink.com

2. Fill out TEFRA/Katie Beckett application

Mail to: Department of Health Care Finance Division of Children’s Health Services Attn: TEFRA/Katie Beckett Coverage Group 441 4th Street, N.W, 9th Floor Washington, DC 20001 (202) 442-5957 Email address: HealthCheck@dc.gov

3. Email Division of Children’s Health Services at the Department of Health Care Finance with Pediatric Level of Care Determination form, TEFRA/Katie Beckett Care Plan form and other supporting documents (IEP/IFSP, diagnostic reports, therapy assessments, etc.)

HealthCheck@dc.gov

Note: you should be able to receive ABA therapy through your current insurance while waiting for HSCSN approval

Legal issues, Advocacy, Parent training and Support groups ❑ Children’s Law Center– provides legal representation for education, SSI, adult guardianship, Medicaid denials,

housing conditions 202-467-4900

❑ Advocates for Justice and Education- provides parent training, review of IEPs, peer support, assistance with insurance applications

202-678-8060

❑ DC Office of the Ombudsman for Public Education 202-741-0886, om.budsman@dc.gov

❑ Quality Trust for Individuals with Disabilities – legal representation and supported decision-making, + new parent training program (see Family Ties below)

202-448-1450, info@dcqualitytrust.org

❑ Disability Rights DC at University Legal Services- provides legal representation for special education and other necessary support services for individuals with disabilities

202-547-0198 http://www.uls-dc.org/protection-and-advocacy-program/disability-rights-dc/

❑ DC Autism Parents – support group for DC parents http://www.dcautismparents.org/home

❑ Family Ties of DC – parent-to-parent support program for parents and caregivers of children with disabilities Family Ties of DC Coordinator: Rhonda Whyte rwhite@dcqualitytrust.org

Recreation Smithsonian’s Morning at the Museum- free sensory-friendly program for families of children with disabilities on Saturday or Sunday mornings. Each program provides pre-registered family early entrance, facilitated activities, pre-visit materials, and a take break space.

https://www.si.edu/access/matm

Kids in Action – an adaptive sports and social activities program for children and young adults with disabilities and their siblings

https://www.si.edu/access/matm

Kids Enjoy Exercise Now (KEEN) of Greater DC-Baltimore – provides 1-to-1 sports and recreational opportunities for children and young adults with developmental and physical disabilities for free

www.keengreaterdc.org

Other helpful websites and resources Autism Speaks 100 day toolkit https://www.autismspeaks.org/tool-kit/100-day-kit-

young-children Autism Society https://www.autism-society.org/

Wandering Tips https://www.healthychildren.org/English/health-issues/conditions/Autism/Pages/Autism-Wandering-Tips-AAP.aspx https://awaare.nationalautismassociation.org/

Sesame Street https://autism.sesamestreet.org/

CDC Learn the Signs. Act Early https://www.cdc.gov/ncbddd/actearly/index.html Autism Navigator https://autismnavigator.com/

Organization for Autism Research

https://researchautism.org/resources/ Wrightslaw https://www.wrightslaw.com/