Care of the Child with Autism Kathryn Smith, RN , MN, DrPH

1. Care of the Child with Autism Kathryn Smith, RN, MN, DrPH Nurse Care Manager, Boone Fetter Clinic Associate Director for Policy, USC University Center for Excellence in Developmental DisabilitiesAssociate Professor of Clinical PediatricsUSC Keck School of Medicine

2. Objectives At the completion of the presentation, participants will be able to: • Provide a description of autism. • Describe the prevalence of autism in the population. • List the defining features of autism. • Describe screening tools and components of a diagnostic assessment. • Describe typical behavioral challenges in autism. • Discuss common medical co-morbidities. • Describe typically prescribed therapies for autism. • Discuss ways of effectively interacting with a child with autism during health care encounters. • Identify resources for parents and providers.

3. Description of Autism • Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors (Autism Speaks). • Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges (CDC). • Autism spectrum disorder (ASD) refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning (NIH). • In summary- difficulties with social interaction, communication and repetitive behaviors.

4. Prevalence of Autism • About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network. • ASD is reported to occur in all racial, ethnic, and socioeconomic groups. • ASD is about 4.5 times more common among boys (1 in 42) than among girls (1 in 189). • Studies in Asia, Europe, and North America have identified individuals with ASD with an average prevalence of between 1-2%. • About 1 in 6 (approximately 17%) children in the United States had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism. • CDC, 2016

5. Defining Features • DSM IV and DSM 5 definitions • Change occurred in May, 2013 • Studies in progress to determine if there are differences in diagnosis and prevalence with the change • DSM IV • Autism is one of a group of serious developmental problems called autism spectrum disorders (ASD) that appear in early childhood, usually before age 3. Though symptoms and severity vary, all autism disorders are characterized by impaired social interaction and communication as well as restricted and repetitive behavior. • Three types: • Autistic disorder (also called “classic autism”) • significant language delays • social and communication challenges • unusual behaviors and interests • Asperger syndrome • milder symptoms of autistic disorder • social challenges • unusual behaviors and interests.  • PDD NOS (also called “atypical autism”) • meet some of the criteria for autistic disorder or Asperger syndrome, but not all • usually have fewer and milder symptoms than those with autistic disorder.  The symptoms only social and communication challenges

6. DSM 5 • Autistic Spectrum Disorder (ASD) • Combined autistic disorder, Asperger’s syndrome and pervasive developmental disorder (PDD-NOS) • Describes disorder by level of severity • Level 3- “requires very substantial support” • Severe deficits in social communication, extreme inflexibility of behavior and difficulty coping with changes, restricted and repetitive behaviors markedly interfere with function • Level 2- “requires substantial support” • Marked deficits in social communication, inflexible behavior and difficulty coping with changes, restricted and repetitive behavior • Level 1- “requires support” • Without supports in place, deficits in social communication, inflexibility of behavior • Removed Rett syndrome and Childhood Disintegrative Disorder

7. Diagnostic Criteria • Persistent deficits in social communication and social interaction across multiple contexts • Deficits in social emotional reciprocity • Deficits in non verbal communicative behaviors used for social interactions • Deficits in developing, maintaining and understanding relationships • Restricted, repetitive patterns of behavior, interests or activities • Stereotyped or repetitive motor movements, use of objects or speech • Insistence on sameness, inflexible routines • Highly restricted, fixated interests that are abnormal in intensity • Hyper or hypo reactivity to sensory input or unusual interests • Symptoms must be present in the early developmental period • Symptoms cause clinically significant impairment in social, occupational or other important areas • These disturbances are not better explained by intellectual disability or global developmental delay

8. Signs and Symptoms of Autism Examples of social issuesrelated to ASDs: • Does not respond to name by 12 months of age • Avoids eye-contact  • Prefers to play alone • Does not share interests with others • Only interacts to achieve a desired goal • Has flat or inappropriate facial expressions • Does not understand personal space boundaries • Avoids or resists physical contact • Is not comforted by others during distress • Has trouble understanding other people's feelings or talking about own feelings 

9. Signs and Symptoms of Autism Examples of communication issuesrelated to ASDs: • Delayed speech and language skills • Repeats words or phrases over and over (echolalia) • Reverses pronouns (e.g., says “me” instead of “I”) • Gives unrelated answers to questions • Does not point or respond to pointing • Uses few or no gestures (e.g., does not wave goodbye) • Talks in a flat, robot-like, or sing-song voice • Does not pretend in play (e.g., does not pretend to “feed” a doll) • Does not understand jokes, sarcasm, or teasing

10. Signs and Symptoms of Autism Examples of unusual interests and behaviorsrelated to ASDs: • Lines up toys or other objects • Plays with toys the same way every time • Likes parts of objects (e.g., wheels) • Is very organized • Gets upset by minor changes • Has obsessive interests • Has to follow certain routines • Flaps hands, rocks body, or spins self in circles

11. Signs and Symptoms of Autism Other symptoms: • Hyperactivity • Impulsivity • Short attention span • Aggression • Causing self injury • Temper tantrums • Unusual eating and sleeping habits • Unusual mood or emotional reactions • Lack of fear or more fear than expected • Unusual reactions to the way things sound, smell, taste, look, or feel 

12. Developmental Screening Instruments: General • Ages and Stages Questionnaire • Battelle Developmental Inventory (BDI) Screening Test • Bayley Infant Neurodevelopmental Screener (BINS) • Brigance Screens-II • Infant Development Inventory • Child Development Review • Child Development Inventory (CDI) • Denver-II Developmental Screening Test • Parents' Evaluation of Developmental Status (PEDS)

13. Developmental Screening Instruments: Disorder-specific Autism and pervasive developmental disorders • Autism Behavior Checklist (ABC) • Checklist for Autism in Toddlers (CHAT) • Modified Checklist for Autism in Toddlers (M-CHAT) • Modified Checklist for Autism in Toddlers-23 (CHAT-23) • Pervasive Developmental Disorders Screening Test-II (PDDST-II) - Stage 1-Primary Care Screener • Pervasive Developmental Disorders Screening Test-II (PDDST-II) - Stage 2-Developmental Clinic Screener • Screening Tool for Autism in Two-Year-Olds (STAT) • Social Communication Questionnaire (SCQ) (formerly Autism Screening Questionnaire-ASQ)

14. Ages and Stages Questionnaire • Can be photocopied • Sensitivity=86% • Specificity=85%

15. ASQ Sample Items 1.When your child wants something, does she tell you by pointing to it? Yes Sometimes Not Yet  4. Does your child say eight or more words in addition to “Mama” and “Dada”? Yes Sometimes Not Yet  http://agesandstages.com/

16. ASQ Scoring • Assign a value of 10 to yes, 5 to sometimes, 0 to not yet • Add up the item scores for each area, and record these totals in the space provided for area totals • Indicate the child’s total score for each area by filling in the appropriate circle on the chart below • Scores in shaded areas prompt a referral Communication Gross Motor Fine Motor Problem solving Personal-social

17. PEDS: Parent’s Evaluation of Developmental Status For children 0 to 8 years • In English, Spanish, Vietnamese, Somali, Chinese • Takes 2 minutes to score • Elicits parents’ concerns • Sorts children into high, moderate or low risk for developmental and behavioral problems • 4th – 5th grade reading level • Score/Interpretation form printed front and back and used longitudinally Available at http://www.pedstest.com/default.aspx

20. Developmental Screening: Recommendations • Infants and young children should be screened for developmental delays using reliable and valid screening techniques at 9,18, 24, 30 months. • Use of standardized developmental screening tools at periodic intervals will increase accuracy. • Use parent-report questionnaires or directly administered tools with sensitivity and specificity of at least 70-80%.

21. Modified Checklist for Autism in Toddlers (M-CHAT) • Validated for screening toddlers between 16 and 30 months of age, to assess risk for autism spectrum disorders (ASD) • Administered and scored as part of a well-child check-up • The American Academy of Pediatrics (AAP) recommends that all children receive autism-specific screening at 18 and 24 months of age, in addition to broad developmental screening at 9, 18, and 24 months • Sensitivity 87% / Specificity 99% • To address high false positives (PPV 80%), there is a structured follow-up interview for use in conjunction with the M-CHAT • Free at: https://www.m-chat.org/print.php

22. Modified Checklist for Autism in Toddlers (M-CHAT) • 23 Yes/No questions • Child screens/shows risk for autism when • 2 or more “BEST 7” items are failed (Question #’s 2,5,7,9,14,15,20) • Any 3 items are failed • *A corresponding M-CHAT Follow-up Interview should be conducted to obtain the most accurate responses to failed items • If fewer than 2 “Best 7” items are failed or fewer than 3 total items are failed then Low Risk for Autism

23. Modified Checklist for Autism in Toddlers (M-CHAT)-BEST 7 Items • #2-Does your child take an interest in other children? • #5-Does your child ever pretend, for example, to talk on the phone or take care of dolls, or pretend other things? • #7-Does your child ever use his/her index finger to point, to indicate interest in something? • #9-Does your child ever bring objects over to you to show you something? • #14-Does your child respond to his/her name when you call? • #15-If you point to toy across the room, does your child look at it? • #20-Have you ever wondered if your child is deaf?

24. Diagnostic Evaluation of Autism • Our model is a comprehensive multidisciplinary team assessment that includes a psychologist, developmental-behavioral pediatrician, speech and language pathologist and occupational therapist. • Other places may use a psychologist alone; some psychiatrists or neurologists may also diagnose. • School districts do not diagnose autism, they qualify for special education services under the autistic like behavior category. • Because the disorder is complex, it may include a genetics or neurological evaluation. Typically hearing testing is also done to rule out hearing loss. • Specific measures • Autism Diagnostic Observation Schedule (ADOS)- an observational measure used to “press” for social communicative behaviors that are often delayed, abnormal or absent in children with ASD • Autism Diagnosis Interview-Revised (ARI-R)- a structured interview that contains over 100 items and is conducted with the caregiver to ascertain a history of autism related symptoms

25. Treatment of Autism • There is no one definitive treatment for autism • A plan of care should be specific to the individual • Most people with autism show developmental progress and respond to a combination of treatment and education • The traditional approach for a child with autism includes: • Behavior management • Speech and language therapy • Occupational therapy • Medical care to treat medical co-morbidities • Special education • Family support and education • Genetic testing and counseling • Possibly medication

26. Behavior Management • Applied behavior analysis (ABA) • Based on the science of learning and behavior and includes general “laws” about how behavior works and how learning takes place. • ABA therapy is used to increase language and communication skills, to improve attention, focus, social skills, memory, and academics, and can be used to help decrease problem behaviors. • ABA is considered an evidence-based “best” practice treatment by the US Surgeon General and by the American Psychological Association. • Floortime • The premise is that adults can help children expand their circles of communication by meeting them at their developmental level and building on their strengths. • Floortime encourages parents to engage children literally at their level – by getting on the floor to play. Families can combine it with other behavioral therapies or use it as an alternative approach. • In Floortime, therapists and parents engage children through the activities each child enjoys. They enter the child's games. They follow the child's lead. Therapists teach parents how to direct their children into increasingly complex interactions. This process, called “opening and closing circles of communication,” remains central to the Floortime approach. • Autism Speaks, 2016

27. Speech Therapy Speech therapy involves more than teaching a child to correctly pronounce words: • Non-verbal communication. • Gestural communication • Picture exchange cards • Electronic talking devices • Other non-verbal communication tools. • Speech pragmatics: language to communicate and socialize • Conversation skills: work on back-and-forth exchange • Concept skills: learning abstract concepts like "few," "justice," and "liberty."

28. Occupational Therapy • Skilled treatment that helps individuals achieve independence in all facets of life • Provide interventions to help a child appropriately respond to information coming through the senses. • Intervention may include swinging, brushing, playing in a ball pit and a whole gamut of other activities aimed at helping a child better manage his body in space. • Facilitate play activities that instruct as well as aid a child in interacting and communicating with others. • Structured play therapies, such as Floortime, which were developed to build intellectual and emotional skills as well as physical skills. • Devise strategies to help the individual transition from one setting to another, from one person to another, and from one life phase to another. • May involve soothing strategies for managing transition from home to school. • Develop adaptive techniques and strategies to get around apparent disabilities • Keyboarding when handwriting is difficult • Selecting a weighted vest to enhance focus

29. Alternative and Complementary Treatments • Many treatments being used • Vitamin therapy • Chelation • No processed sugar • Probiotics • Chiropractic • Most are not well studied or proven • Diet therapy most popular (gluten free, casein free) • Some are dangerous

30. Medical Co-morbidities and Autism • Gastrointestinal (GI) Symptoms • Neurologic Concerns • Sleep Issues • Feeding Issues • Overeating/obesity • Selective eating/poor weight gain

31. Gastrointestinal Symptoms • Abdominal pain • Diarrhea • Gastroesophageal reflux (GERD) • Constipation

32. Constipation • Present in up to 45% of children with autism (Coury, et al., 2012) • >2weeks of delay or difficulty in passing stool • Many, many, many causes • Evaluation • Thorough medical and diet history • Thorough physical exam • Rectal exam • Exam of the back and spine • Neurologic exam • Treatment • Mineral oil (not for children <1yo) • Magnesium hydroxide (Milk of Magnesia) • Lactulose • Polyethylene Glycol (Miralax) • Glycerin Suppositories

33. Gastroesophageal Reflux • Passage of gastric contents into the esophagus • Symptoms • Vomiting • Weight loss or poor weight gain • Heart burn or chest pain • Difficulty swallowing or feeding refusal • Wheezing or noisy breathing • Hoarseness • Cough • Abnormal neck positioning, arching • Evaluation • Thorough history and physical exam • Upper GI or pH probe • Treatment • Empiric proton pump inhibitor for two weeks (30min before meal)

34. Neurologic Concerns • Epilepsy/seizures • As high as 46% in some studies • Treatment is the same as in those without ASD • More needs to be studied on potential treatments for those with abnormal EEG findings but without clinical epilepsy

35. Sleep Symptoms • One of the most common concerns (up to 68%, Armstrong, et al., 2015) • Delayed falling asleep • Night time awakening • Early awakening • Obstructive sleep apnea • Reduced need for sleep • Most frequent sleep disorder is insomnia • Often has a strong behavioral component • Sleep onset association • Problem of limit setting surrounding bedtime behavior • May use methods to calm but then the child fails to develop own skills to self-calm or self-soothe • Typically require a behavioral plan as part of the treatment

36. Sleep Symptoms • Treatment • Behavioral treatments/appropriate sleep hygeine • Quiet bedtime routine • Own bed, lights out • No TV, no screen time • Limit daytime naps • Melatonin (3 to 6 mg given 30 minutes before bedtime) • Discourage the use of prescription medications in children • Sleep specialist

37. Obesity • Usually multi-factorial • Medications • Rigidity with diet • Mental health related co-morbidities • Lack of exercise • Approach • Same as the child/adolescent without autism but more difficult • Screen for medical co-morbidities and treat • Behavioral approaches

38. Medication and Autism • Given to help manage behavioral manifestations of the disorder: • Hyperactivity • Impulsivity • Attention difficulties • Anxiety • Usually, medication is given to lessen these problems so that the person can receive maximum benefit from behavioral and educational approaches

39. Medication and Autism • Antipsychotic drugs: • Reduce hyperactivity, repetitive behaviors, withdrawal, and aggression in some • Newer, atypical antipsychotics, including risperdone, olanzapine, aripriprazole, and quetiapine • Risperidone and aripiprazole are approved by the U.S. Food and Drug. Administration to treat irritability, aggression, and self-injurious behaviors in children and adolescents with autism • Antidepressants:  • Selective serotonin reuptake inhibitors (SSRIs) commonly used to treat people with depression, OCD, and anxiety • May reduce repetitive behaviors, improve depression, irritability, tantrums, and aggression • Stimulants:  • Drugs used to treat ADHD • Examples include methylphenidate (Ritalin, Concerta), dexmethylphenidate(Focalin), as well as amphetamines, dextroamphetamine (Adderall, Dexedrine), and lisdexamfetamine (Vyvanase).

40. Community Services for Children with ASD • Regional Centers • Early Start • Services for individuals over 3 with an eligible condition (Lanterman Act) • Family Resource Centers • Public schools and non public schools • Private therapies

41. California Regional Centers • 21 State Regional Centers, 7 in LA County • Each is an independent, private, non-profit corporation under contract with the State Department of Developmental Services • Regional Center serves as the point of entry into the developmental disabilities service system in California.

42. What Regional Centers Do • Coordinate services for people with developmental disabilities • Promote access to health, developmental, social, educational and vocational services in order to maximize opportunities and choices in living, working, and learning in the community • Work with other community agencies and utilize “generic services” by other publicly funded agencies • Services not provided by public agencies are generally purchased through contracts with service providers vendored by a Regional Center • Services/programs may vary among the Regional Centers based on local decisions, needs and resources

43. Who is Eligible for Regional Center Services? • Infants who have or are at risk for a developmental disability (The Early Start Program) • People with developmental disabilities • People at high risk of giving birth to a child with a developmental disability

44. Regional Center Services • Early Start services- infant development, speech and language therapies, ABA, Floortime, occupational therapy • Lanterman Act services for those over age 3 and with a Regional Center qualifying condition (ID/MR, autism, cp, epilepsy, 5th category)- numerous services to support the individual including adult day health care, respite, service coordination, supported employment, advocacy, residential care and more • Generic services must be used first

45. Snapshot of Regional Center Clients with Autism 68,832 individuals with autism 6.3% have autism and epilepsy 35.6% have autism and intellectual disability DDS, Jan. 2014

46. Special Education • Specially designed instruction • No cost to the parent • Meets the unique needs of individuals with exceptional needs, whose educational needs cannot be met with modification of the regular instructional program • Includes related services to assist such individuals to benefit from specially designed instruction • Provides education in a manner that promotes maximum interaction between children or youth with disabilities and children, or youth who are not disabled, in a manner that is appropriate to the needs of both • Provided in the least restrictive environment California Education Code (Section 56031)

47. Special Education Where are services provided? A regular classroom (with necessary supports) A resource room A special day class on a regular campus A separate special education public school campus A non-public school (a private therapeutic school that is credentialed by the state and eligible to receive funding through local school districts) A residential or home-school placement A hospital or residential treatment facility Services are to be provided in the least restrictive environment (or most “regular” setting) possible.

48. Special Education What services are provided? Assessment Development of an individual education plan (IEP) Evaluation of goals and modification of education plan as needed Related services Therapies Psychology services Transportation One on one aides Health services

49. Autism and the Hospital • Four categories of challenging behaviors (non-compliance, hyperactivity, sensory defensiveness, self-injury) are typically present • Challenging behaviors are more likely in children with severe forms of ASD, and include aggression, tantrums, property destruction, hitting, kicking, biting, punching, scratching, and throwing furniture • The behaviors stress parents, families, and health care providers  • Challenging behaviors are a child's way of communicating their frustration when their routine is interrupted • Johnson et al, 2013

50. Caring for the Child with Autism in the Health Care Setting • LISTEN TO THE PARENT- the parent will likely know what works and what doesn’t, how to approach the child, what their fears or sensitivities are • Ask about prior health care encounters- what was problematic, what worked well • If the parent does not have strategies in place, assist in identifying some • Identify comfort items that can be used (a chewy, earphones, weighted blankets) • Try to maintain the child’s routine, prepare for transitions to minimize tantrums