1. Pediatric Sleep Problems and ASD: Types, Assessment, & Intervention Presented by: Kathleen Armstrong, Ph.D., NCSP Department of Pediatrics November 2, 2012

2. Objectives Review prevalence of pediatric sleep problems Review prevalence of pediatric sleep problems Describe relationship between sleep problems, age, and ASD Describe relationship between sleep problems, age, and ASD Differentiate types of sleep-wake disorders Differentiate types of sleep-wake disorders Compare interventions for pediatric sleep problems in ASD population Compare interventions for pediatric sleep problems in ASD population

3. Function of Normal Sleep Sleep Theories Sleep Theories Restorative Theory Restorative Theory Conservation of Energy Theory Conservation of Energy Theory Adaptive Theory Adaptive Theory Memory Consolidation Theory Memory Consolidation Theory

4. What makes us sleep Adenosine and other neurotransmitters Adenosine and other neurotransmitters Environmental cues alter biological clock Environmental cues alter biological clock

5. Stages of Sleep 4 stages of sleep 4 stages of sleep Cyclic (go through them in same order) Cyclic (go through them in same order) First 3 are non-rapid eye movement (Non-Rem) First 3 are non-rapid eye movement (Non-Rem) Fifth is rapid eye movement (REM) Fifth is rapid eye movement (REM) Amount of REM changes with development Amount of REM changes with development

6. Sleep and Lifespan

7. Optimum Sleep and Development Sleep optimizes cognition, memory, behavior regulation, and learning Sleep optimizes cognition, memory, behavior regulation, and learning Slow wave (stage N3 sleep) plays role in memory consolidation Slow wave (stage N3 sleep) plays role in memory consolidation REM sleep essential for processing memories within emotional component REM sleep essential for processing memories within emotional component

8. Prevalence of Pediatric Sleep Problems Common complaint, exact prevalence is unknown Common complaint, exact prevalence is unknown 53-78% of children with ASD 53-78% of children with ASD 20-50% of children with ADHD 20-50% of children with ADHD 46% of children with developmental delay 46% of children with developmental delay 32% of typical children 32% of typical children 27% of children presenting to community screening for developmental concerns 27% of children presenting to community screening for developmental concerns 18% of children in the bottom 10% of their class have a sleep disorder 18% of children in the bottom 10% of their class have a sleep disorder Only 2% of children with sleep disorders diagnosed and treated Only 2% of children with sleep disorders diagnosed and treated

9. Consequences related to Pediatric Sleep Disorders Health Problems Health Problems Car crashes Car crashes Obesity Obesity Growth hormone deficiency Growth hormone deficiency Immune system compromised Immune system compromised School Performance School Performance Poor Attention Poor Attention Lower Grades Lower Grades Impaired Social Skills Impaired Social Skills Emotional & Behavioral Problems Emotional & Behavioral Problems Disruptive Behavior, Mood, Inattention, Aggression, Anxiety Disruptive Behavior, Mood, Inattention, Aggression, Anxiety

10. Sleep problems and ASD Sleep problems major health concern for ASD Sleep problems major health concern for ASD Sleep problems probably not related to subtype of ASD, or IQ Sleep problems probably not related to subtype of ASD, or IQ Sleep problems change as children grow older Sleep problems change as children grow older Sleep problems in ASD may increase aggressive behavior, developmental regression, mood, stereotypies, and anxiety Sleep problems in ASD may increase aggressive behavior, developmental regression, mood, stereotypies, and anxiety Sleep problems related to medical problems Sleep problems related to medical problems

11. Sleep Problems and Development Children Children Under 5-sleep anxiety, bedtime resistance, parasomnias, night wakenings Under 5-sleep anxiety, bedtime resistance, parasomnias, night wakenings Adolescents Long-standing poor sleep hygiene Anxiety related to sleep difficulties Circadian rhythm difficulties Daytime sleepiness

12. Medical Risks and Sleep Problems Allergies, ear infections, & asthma Allergies, ear infections, & asthma Cranial-facial Syndromes Cranial-facial Syndromes Diabetes Diabetes GI problems GI problems Large tonsils or mouth malformations Large tonsils or mouth malformations Neuromuscular disorders Neuromuscular disorders Obesity Obesity Seizures Seizures Vision problems Vision problems

13. ASD and Sleep Dysregulation Theories Theories Genetic mutations in the neuroligin-3 an neuroligin- 4 genes resulting in epilepsy or sleep-wake disturbance in ASD Genetic mutations in the neuroligin-3 an neuroligin- 4 genes resulting in epilepsy or sleep-wake disturbance in ASD Decrease in GABA B receptors in occipital and cingulate cortices Decrease in GABA B receptors in occipital and cingulate cortices Abnormally low levels of Melatonin Abnormally low levels of Melatonin Decreased interhemispheric synchronization between right and left temporal gyrus during sleep Decreased interhemispheric synchronization between right and left temporal gyrus during sleep

14. Sleep-Wake Disorders in ASD Circadian rhythm sleep disturbances Circadian rhythm sleep disturbances Behavioral insomnia Behavioral insomnia Rapid eye movement sleep disorder Rapid eye movement sleep disorder Daytime sleepiness Daytime sleepiness Restless leg syndrome Restless leg syndrome Periodic limb movement disorder Periodic limb movement disorder Obstructive sleep apnea Obstructive sleep apnea Narcolepsy Narcolepsy

15. Assessment of Sleep Problems Clinical history Clinical history Sleep initiation, maintenance, duration; refreshed and alert in AM; bedtime routine; anxiety/depression; unusual nighttime behaviors Sleep initiation, maintenance, duration; refreshed and alert in AM; bedtime routine; anxiety/depression; unusual nighttime behaviors Sleep log Sleep log 2-3 weeks to document sleep-wake patterns 2-3 weeks to document sleep-wake patterns Wrist actigraphy Wrist actigraphy Can combine with sleep log Can combine with sleep log Polysomnography Polysomnography Needed for OSAS, RLS, or nocturnal seizures Needed for OSAS, RLS, or nocturnal seizures

16. Child’s Sleep Diary MonTuesWedTheFriSatSun Bedtime Time fell asleep Times awake during night Time awake in morning Child refreshed? YesNoYesNoYesNoYesNoYesNoYesNoYesNo

17. Actigraphy Promising technique to measure sleep patterns and response to intervention, especially for those with neurodevelopmental disorders Promising technique to measure sleep patterns and response to intervention, especially for those with neurodevelopmental disorders Parent still needs to maintain accurate sleep diary, so actigraph can be interpreted in context of when child went to bed. Parent still needs to maintain accurate sleep diary, so actigraph can be interpreted in context of when child went to bed. Documents sleep onset delay. Documents sleep onset delay.

18. Medical Intervention for OSAS Tonsillectomy & Adenoidectomy (T&A) Tonsillectomy & Adenoidectomy (T&A) Continuous Positive Airway Pressure (CPAP) Continuous Positive Airway Pressure (CPAP) Weight Loss Weight Loss Dental Appliances Dental Appliances

19. Evidence-Based Behavioral Interventions Problems with initiating and maintaining sleep Problems with initiating and maintaining sleep Sleep hygiene* Sleep hygiene* Standard extinction Standard extinction Problems with night terrors Problems with night terrors Scheduled awakenings Scheduled awakenings Problems with co-sleeping Problems with co-sleeping Standard extinction Standard extinction

20. Sleep Hygiene* Consistent bedtime routine* Consistent bedtime routine* Avoid stimulating bedtime activities Avoid stimulating bedtime activities Turn off media Turn off media Provide relaxing activities Provide relaxing activities Keep bedroom dark and cool Keep bedroom dark and cool Restrict caffeine before bedtime Restrict caffeine before bedtime Offer protein snack Offer protein snack Encourage sun exposure and exercise during day Encourage sun exposure and exercise during day

21. Standard Extinction 1. Parents ignore all bedtime disruptions 1. Parents ignore all bedtime disruptions Ferber Method (1985)-ignore all disruptive behaviors for a preset time Ferber Method (1985)-ignore all disruptive behaviors for a preset time At the end of time, parent settles child back in bed, with minimal interaction At the end of time, parent settles child back in bed, with minimal interaction 2. Often results in extinction burst 2. Often results in extinction burst Parents need support to stay the course Parents need support to stay the course May not be suitable for children with self injurious behavior or physical disabilities May not be suitable for children with self injurious behavior or physical disabilities

22. Sleep Disorders and Medications Circadian rhythm disorder-Melatonin 5-6 hours prior to bedtime Circadian rhythm disorder-Melatonin 5-6 hours prior to bedtime Parasomnias of NREM or REM sleep- Clonazepam at bedtime, or melatonin at bedtime Parasomnias of NREM or REM sleep- Clonazepam at bedtime, or melatonin at bedtime Epilepsy-Antiepileptic agents depending upon seizure type Epilepsy-Antiepileptic agents depending upon seizure type RLS-Oral iron; gabapentin(Neurontin) RLS-Oral iron; gabapentin(Neurontin) PLMD-Oral iron PLMD-Oral iron

23. Melatonin Pineal hormone that regulates sleep-wake cycle and promotes sleep Pineal hormone that regulates sleep-wake cycle and promotes sleep Prolonged sleep latency and decreased sleep time in ASD consistent with circadian rhythm disorder, potentially related to melatonin Prolonged sleep latency and decreased sleep time in ASD consistent with circadian rhythm disorder, potentially related to melatonin Deficiencies in melatonin in blood and urine samples documented in ASD Deficiencies in melatonin in blood and urine samples documented in ASD

24. Melatonin and Cognitive Behavioral Therapy 160 children with ASD, with sleep onset insomnia and sleep maintenance 160 children with ASD, with sleep onset insomnia and sleep maintenance Randomly assigned to (1) Combination of melatonin and CBT, (2) Melatonin, (3) CBT, (4) Placebo Randomly assigned to (1) Combination of melatonin and CBT, (2) Melatonin, (3) CBT, (4) Placebo Combination group showed fewer dropouts, achieved normal sleep efficiency, and sleep onset latency. Combination group showed fewer dropouts, achieved normal sleep efficiency, and sleep onset latency.

25. Off-Label Medications MedicationIndications Clonidine RLS, ADHD Clonidine RLS, ADHD Non-benzodiazepinesSleep onset/mainten. Non-benzodiazepinesSleep onset/mainten. AntidepressantsInsomnia AntidepressantsInsomnia BenzodiazepinesSleep onset/mainten. BenzodiazepinesSleep onset/mainten. * Not FDA approved for use with children. Limit usage at lowest possible dose. Use in caution in patients with respiratory, renal, hepatic impairment. No Alcohol.

26. Other Agents-with caution* Non-prescription agents Non-prescription agents Valerian Valerian Kava Kava Antihistamines* Antihistamines*

27. Autism Speaks/Sleep Tool Kit ATN/AIR-P Sleep Tool Kit-Parent Booklet and Quick Tips ATN/AIR-P Sleep Tool Kit-Parent Booklet and Quick Tips Using visual schedule to teach bedtime routines Using visual schedule to teach bedtime routines Using a bedtime pass Using a bedtime pass Sleep tips for children with autism who have limited verbal skills Sleep tips for children with autism who have limited verbal skills

28. Case Study: Savanna Girl, age 36 months diagnosed with ASD Girl, age 36 months diagnosed with ASD Presenting problems: Inconsistent sleep schedule, difficulties falling asleep at night, night-time awakenings/unable to console self, restless sleeper, snores loudly, and usually ends up in parent’s bed Presenting problems: Inconsistent sleep schedule, difficulties falling asleep at night, night-time awakenings/unable to console self, restless sleeper, snores loudly, and usually ends up in parent’s bed Medical: Allergies, ear infections, poor eater, height/weight < 5 th percentile Medical: Allergies, ear infections, poor eater, height/weight < 5 th percentile Delayed social communication skills Delayed social communication skills Difficulty with transitions Difficulty with transitions

29. Savanna’s Intervention Referred to pediatric sleep specialist by her pediatrician Referred to pediatric sleep specialist by her pediatrician Polysomnogram confirms OSA Polysomnogram confirms OSA Tonsils and adenoids removed Tonsils and adenoids removed Parent education Parent education Establish healthy sleep routine Establish healthy sleep routine Implement standard extinction Implement standard extinction Use social story to reinforce sleep routine Use social story to reinforce sleep routine

30. 6-month Follow-up Sleep problems resolved Sleep problems resolved Improved ability to follow directions Improved ability to follow directions Seems happy in morning Seems happy in morning Less emotionally reactive Less emotionally reactive Improved social skills Improved social skills

31. Case Study: Sam Boy, age 15, diagnosed with ASD Boy, age 15, diagnosed with ASD Presenting problems: Difficulties falling and staying asleep, difficult to wake in AM and late for bus, sleeps during AM classes Presenting problems: Difficulties falling and staying asleep, difficult to wake in AM and late for bus, sleeps during AM classes Medical: Long history for sleep problems, anxious mood, picky eater, constipation, average height and weight Medical: Long history for sleep problems, anxious mood, picky eater, constipation, average height and weight Limited interest in social activities with peers, but has on-line “friends” Limited interest in social activities with peers, but has on-line “friends” Propensity for routines and motivation for sameness Propensity for routines and motivation for sameness

32. Sam’s Intervention Referred to pediatric sleep specialist & psychologist: Referred to pediatric sleep specialist & psychologist: Maintain sleep diary for 3 weeks Maintain sleep diary for 3 weeks Prescribed extended release Melatonin 3-6 mg Prescribed extended release Melatonin 3-6 mg Parent education regarding sleep hygiene Parent education regarding sleep hygiene Maintain consistent sleep schedule Maintain consistent sleep schedule Increase outdoor daily activity Increase outdoor daily activity Shut off electronic media by 8 PM Shut off electronic media by 8 PM Sam-CBT Sam-CBT Practice CBT prior to bedtime Practice CBT prior to bedtime Chart and graph progress Chart and graph progress

33. 6-month Follow-up Sleep problems are resolving with new routine Sleep problems are resolving with new routine Continues to graph progress Continues to graph progress Less difficulty getting up and ready for school Less difficulty getting up and ready for school Less anxiety reported by Sam Less anxiety reported by Sam Improved performance at school Improved performance at school

34. Take-home message Increased prevalence of sleep problems for children and adolescents with ASD Increased prevalence of sleep problems for children and adolescents with ASD Consequences of poor sleep include problems with behavior, learning and memory, growth, and higher parental stress Consequences of poor sleep include problems with behavior, learning and memory, growth, and higher parental stress More research needed to establish efficacy of sleep interventions for those with ASD More research needed to establish efficacy of sleep interventions for those with ASD Improving sleep habits always first line of treatment* Improving sleep habits always first line of treatment*

35. References Armstrong, K., Kohler, W., & Lilly. (2009). The young and the restless: A pediatrician’s guide to managing sleep problems. Contemporary Pediatrics, 26(3), 28-39. Cortesi, G., Giannotti,F., Sebastiani, T., Panuzi,S., Valente, D. (2012). Controlled-release melatonin, singly and combined with CBT for persistent insomnia in children with ASD: A randomized placebo-controlled trial. Journal Sleep Research, 21(6), 700-709. Cortesi, G., Giannotti,F., Sebastiani, T., Panuzi,S., Valente, D. (2012). Controlled-release melatonin, singly and combined with CBT for persistent insomnia in children with ASD: A randomized placebo-controlled trial. Journal Sleep Research, 21(6), 700-709. Goldman, S., Richdale, A., Clemons, T., & Malow, B. (2012). Parental sleep concerns in ASD: Variations from childhood to adolescence. Journal Autism Developmental Disorders, 42, 531- 538. Goldman, S., Richdale, A., Clemons, T., & Malow, B. (2012). Parental sleep concerns in ASD: Variations from childhood to adolescence. Journal Autism Developmental Disorders, 42, 531- 538. Kotagal, S., & Broomall, E. (2012). Sleep in children with ASD. Pediatric Neurology, 47, 242-251. Kotagal, S., & Broomall, E. (2012). Sleep in children with ASD. Pediatric Neurology, 47, 242-251. Vriend, J., Corkum, P., Moon,E., & Smith, I. (2011). Behavioral interventions for sleep problems in children with ASD: Current findings and future directions. Journal of Pediatric Psychology, 36(9), 1017-1029. Vriend, J., Corkum, P., Moon,E., & Smith, I. (2011). Behavioral interventions for sleep problems in children with ASD: Current findings and future directions. Journal of Pediatric Psychology, 36(9), 1017-1029.