1. Sleep Issues in Autism David Ermer MD June 8, 2012

2. Children with Autism have High Rates of Sleep Problems 44-89% rates of sleep disturbance in autism spectrum disorders (ASDs) 44-89% rates of sleep disturbance in autism spectrum disorders (ASDs) Compared to 20-50% of typically functioning children with sleep disturbances Compared to 20-50% of typically functioning children with sleep disturbances Sleep problems tended to be chronic with low remission rate compared to children without ASD Sleep problems tended to be chronic with low remission rate compared to children without ASD Insomnia is one the most common concurrent problems in children with ASDs Insomnia is one the most common concurrent problems in children with ASDs

3. Characteristics of Children with ASD and Autism No correlation between developmental level and sleep problem No correlation between developmental level and sleep problem One study found sleep problems more common in boys than girls One study found sleep problems more common in boys than girls More sleep problems with higher level of communication impairment More sleep problems with higher level of communication impairment More sleep problems with severity of daytime behavior and diagnosis of comorbid ADHD More sleep problems with severity of daytime behavior and diagnosis of comorbid ADHD

4. Common Sleep Problems in ASD (Jody Mindell PhD) Highly irregular sleep-wake cycles Highly irregular sleep-wake cycles Unusual, problematic sleep routines (often accompanied by repetitive behaviors) Unusual, problematic sleep routines (often accompanied by repetitive behaviors) Difficulty settling, delayed sleep onset Difficulty settling, delayed sleep onset Frequent and prolonged night wakings Frequent and prolonged night wakings Short sleep duration Short sleep duration Early morning wake times Early morning wake times

5. Causes of Insomnia Neurobiological Abnormalities in GABA, Serotonin, and melatonin production in ASDs Abnormalities in GABA, Serotonin, and melatonin production in ASDs Neuron transmitter system disruption Neuron transmitter system disruption Circadian disturbances affecting sleep wake cycle Circadian disturbances affecting sleep wake cycle

6. Causes of Insomnia Behavioral/Emotional Inadequate sleep hygiene, poor sleep habits Inadequate sleep hygiene, poor sleep habits Hypersensitivity to environmental stimuli Hypersensitivity to environmental stimuli Hyperarousal/difficulty with self regulation Hyperarousal/difficulty with self regulation Repetitive thoughts or behaviors that interfere with settling Repetitive thoughts or behaviors that interfere with settling Inability to benefit from communiction/social cues regarding sleep Inability to benefit from communiction/social cues regarding sleep Co-occurring psychiatric condition (anxiety, ADHD) Co-occurring psychiatric condition (anxiety, ADHD)

7. Causes of Insomnia Medical/physical Coexisting neurologic disorder: (eg, epilepsy) Coexisting neurologic disorder: (eg, epilepsy) Coexisting medical disorder: (eg, gastrointestinal reflux disease, asthma, allergies, constipation) Coexisting medical disorder: (eg, gastrointestinal reflux disease, asthma, allergies, constipation) Medications: ( eg, corticosteroids, bronchodilators, stimulants) Medications: ( eg, corticosteroids, bronchodilators, stimulants) Chronic pain: (eg, tooth pain) Chronic pain: (eg, tooth pain) Other sleep disorders: (eg, obstructive sleep apnea, restless leg syndrome etc.) Other sleep disorders: (eg, obstructive sleep apnea, restless leg syndrome etc.)

8. Effects of Sleep Problems in Children with ASD Stress in families and children; families report more daily stress and more intense hassles Stress in families and children; families report more daily stress and more intense hassles Parental sleep difficulties Parental sleep difficulties Increased daytime behavior problem Increased daytime behavior problem Higher rates of stereotyped behavior along with higher overall autism severity scores Higher rates of stereotyped behavior along with higher overall autism severity scores Higher social skills deficits Higher social skills deficits

9. Effects of Sleep Problems (cont) Exacerbation of medical problems such as seizure disorder or gastrointestinal problems Exacerbation of medical problems such as seizure disorder or gastrointestinal problems In summary sleep problems affect the health and quality of life of children, parents, and others in the family In summary sleep problems affect the health and quality of life of children, parents, and others in the family

10. Evaluation of Sleep Problems in ASD The Autism Treatment Network has developed an algorithm for dealing with sleep in ASDs and the algorithm is currently being studied at several medical centers The Autism Treatment Network has developed an algorithm for dealing with sleep in ASDs and the algorithm is currently being studied at several medical centers With the high prevalence of sleep problems everyone with an ASD should be screened for sleep problems With the high prevalence of sleep problems everyone with an ASD should be screened for sleep problems If sleep problems are reported a comprehensive sleep history should be done If sleep problems are reported a comprehensive sleep history should be done

11. Comprehensive Sleep History Data collection should include bedtime, waking time, napping time, and waking during the night along with associated behaviors Data collection should include bedtime, waking time, napping time, and waking during the night along with associated behaviors Daytime functioning should be assessed Daytime functioning should be assessed Children’s Sleep Habits Questionnaire is a useful tool to assess multiple domains of sleep problems including breathing disorders, anxiety, resistance and daytime sleepiness Children’s Sleep Habits Questionnaire is a useful tool to assess multiple domains of sleep problems including breathing disorders, anxiety, resistance and daytime sleepiness

12. Comprehensive Sleep History (cont) Family Inventory of Sleep Habits (FISH) is an instrument that assesses bedtime routines and parental interactions Family Inventory of Sleep Habits (FISH) is an instrument that assesses bedtime routines and parental interactions Behavioral rating scales can be used to assess for comorbid psychiatric conditions Behavioral rating scales can be used to assess for comorbid psychiatric conditions Assess for treatable causes of insomnia such as medical condition (obstructive sleep apnea), medications, seizures etc. Assess for treatable causes of insomnia such as medical condition (obstructive sleep apnea), medications, seizures etc.

13. Further Sleep Evaluations Polysomnography (PSG) is the gold standard for sleep evaluations but is expensive and difficult to tolerate Polysomnography (PSG) is the gold standard for sleep evaluations but is expensive and difficult to tolerate Sleep diaries and sleep actigraphy in addition to good history and physical exam can many times identify causes of sleep problems Sleep diaries and sleep actigraphy in addition to good history and physical exam can many times identify causes of sleep problems

14. Initial Treatment of Insomnia Treatable medical and psychiatric conditions should first be addressed Treatable medical and psychiatric conditions should first be addressed Basic sleep hygiene (sleep environment, bedtime routine etc) should be addressed Basic sleep hygiene (sleep environment, bedtime routine etc) should be addressed If no improvements more structured behavioral interventions should be considered If no improvements more structured behavioral interventions should be considered Children with ASDs have a less robust response to behavior interventions Children with ASDs have a less robust response to behavior interventions

15. Sleep Hygiene Strategies ( From presentation by Jodi Mindell, PhD) Daytime habits including exercise, exposure to light, limited caffeine Daytime habits including exercise, exposure to light, limited caffeine Evening habits including decreased stimulation, decreased light, decreased exposure to electronics Evening habits including decreased stimulation, decreased light, decreased exposure to electronics

16. Sleep Hygiene Sleep Environment Cool with minimal light and sound: Children with ASD may be hypersensitive to stimuli such as light and sound Cool with minimal light and sound: Children with ASD may be hypersensitive to stimuli such as light and sound Sound machine Sound machine Sensory issues: Textures (pajamas, sheets, blankets), Deep pressure (weighted blanket), body pillow Sensory issues: Textures (pajamas, sheets, blankets), Deep pressure (weighted blanket), body pillow

17. Behavioral Interventions Best to work with behavior expert with experience in pediatric ASDs Best to work with behavior expert with experience in pediatric ASDs Interventions include use of visual cues and extinction techniques Interventions include use of visual cues and extinction techniques Autism Treatment Network is currently evaluating efficacy of a manualized protocol Autism Treatment Network is currently evaluating efficacy of a manualized protocol Sleep hygiene is “necessary but not sufficient” Sleep hygiene is “necessary but not sufficient”

18. Pharmacologic Treatment of Sleep Disorders in Children with ASDs There are no FDA approved medications for pediatric insomnia There are no FDA approved medications for pediatric insomnia Must be used in conjunction with behavioral strategies and sleep hygiene Must be used in conjunction with behavioral strategies and sleep hygiene Medications all have side effects and are much less tolerated in individuals with ASDs compared to typically developing children Medications all have side effects and are much less tolerated in individuals with ASDs compared to typically developing children

19. Melatonin Most used and most research currently supporting melatonin Most used and most research currently supporting melatonin Melatonin is a neurohormone naturally produced from the pineal gland in the brain to promote sleep Melatonin is a neurohormone naturally produced from the pineal gland in the brain to promote sleep Non FDA regulated as it is considered a nutritional supplement Non FDA regulated as it is considered a nutritional supplement

20. Melatonin Low cost, easily available without a prescription Low cost, easily available without a prescription Not extensively studied but so far no significant side effects Not extensively studied but so far no significant side effects 85% sleep improvement in one study of children with ASDs 85% sleep improvement in one study of children with ASDs Improved sleep latency and duration Improved sleep latency and duration

21. Melatonin Should be given 30 minutes before desired bedtime Should be given 30 minutes before desired bedtime 1 mg usual starting dose with 1 mg increases every week up to 6 mg or higher 1 mg usual starting dose with 1 mg increases every week up to 6 mg or higher Once a sleep cycle has been established for 6 weeks or more attempts should be made to discontinue Once a sleep cycle has been established for 6 weeks or more attempts should be made to discontinue Long term use appears safe, however, and may be necessary Long term use appears safe, however, and may be necessary

22. Other Sleep Medications Clonidine One of the most widely use medications for pediatric insomnia One of the most widely use medications for pediatric insomnia Not adequately studied Not adequately studied Side effects include hypotension, bradycardia, irritability, and rebound hypertension after discontinuation Side effects include hypotension, bradycardia, irritability, and rebound hypertension after discontinuation Dosing is usually 0.05mg to 0.1mg 30 minutes before desired bedtime Dosing is usually 0.05mg to 0.1mg 30 minutes before desired bedtime

23. Other Sleep Medications Trazadone Sedating antidepressant with limited pediatric studies Sedating antidepressant with limited pediatric studies Use caution in males as can cause priapism and children with ASDs may have limited ability to communicate side effects Use caution in males as can cause priapism and children with ASDs may have limited ability to communicate side effects Dosing is starting at 25 mg, usually not higher than 100 mg at bedtime Dosing is starting at 25 mg, usually not higher than 100 mg at bedtime

24. Other Sleep Medications Mirtazapine Sedating antidepressant Sedating antidepressant Can cause morning sedation Can cause morning sedation Does not change sleep architecture Does not change sleep architecture Dosing 15 mg at bedtime, higher doses are less sedating Dosing 15 mg at bedtime, higher doses are less sedating

25. Other Sleep Medications Benzodiazepines Typically avoid due to sedation and cognitive effects, Typically avoid due to sedation and cognitive effects, Tolerance and dependence can develop Tolerance and dependence can develop Clonazepam has been used for nonREM arousal disorders such as sleep walking if the events pose a risk to the child; eg. walking outside in sleep Clonazepam has been used for nonREM arousal disorders such as sleep walking if the events pose a risk to the child; eg. walking outside in sleep

26. Other Sleep Medications Diphenhydramine (Benadryl) Most commonly used over the counter sleep medication Most commonly used over the counter sleep medication Tolerance can develop Tolerance can develop Can cause morning sedation, dry eyes, dry mouth Can cause morning sedation, dry eyes, dry mouth Dosing 10 to 50 mg at bedtime Dosing 10 to 50 mg at bedtime

27. Sleep Medications Consider treatments for other disorders that may help sleep Consider treatments for other disorders that may help sleep Use the sedating side effects of other medications Use the sedating side effects of other medications For instance give sedating allergy treatments at night or sedating seizure medications at night For instance give sedating allergy treatments at night or sedating seizure medications at night

28. Discussion of Risperidone Risperidone can improve sleep quality but should not be used solely for the treatment of insomnia Risperidone can improve sleep quality but should not be used solely for the treatment of insomnia There are reports of risperidone being overprescribed and for inappropriate reasons There are reports of risperidone being overprescribed and for inappropriate reasons Risperidone has the potential for significant side effects Risperidone has the potential for significant side effects Risperidone should only be used for serious and extreme behavior problems Risperidone should only be used for serious and extreme behavior problems

29. Summary Sleep problems are common in children with ASDs Sleep problems are common in children with ASDs Sleep problems have a significant impact on children parents and other family members Sleep problems have a significant impact on children parents and other family members Cornerstone of treatment is understanding the cause Cornerstone of treatment is understanding the cause Targeting effective treatment strategies is dependent on understanding the underlying cause or causes Targeting effective treatment strategies is dependent on understanding the underlying cause or causes Medication should always be used in conjunction with sleep hygiene and behavioral treatments Medication should always be used in conjunction with sleep hygiene and behavioral treatments