1. Solve Your Child’s Sleep Problems Solve Your Child’s Sleep Problems Autism Cymru 3 rd International Conference Caerdydd; April 2008 Dr David Bramble MD Consultant Child & Adolescent Learning Disability Psychiatrist Telford & Wrekin Primary Care Trust

2. Disclaimer “The advice provided by Dr Bramble today is underpinned by research findings and peer-evaluated practices; however, he cannot take responsibility for parents or carers who wish to implement any of his advice or suggestions provided in this talk. Should parents wish to use this information they do so at their own risk.”

3. What about your sleep? 1. What time do you usually get to sleep? 2. Do you wake during the night? (a) How many times? (b) For how long each time usually? 3. What time do you normally get up? 4. Usually, how many hours undisturbed sleep do you get? 5. Do you feel refreshed in the mornings? 6. Do you regularly feel sleepy in the day? 7. Have you fallen asleep during the day? 8. Do you feel tense most of the day? 9. Do you often feel depressed? 10. Rate your overall sleep quality (0 = “very bad” to 10=”very good”): ____/10

4. Children’s Sleep Disorders: BACKGROUND (1) ● Children’s sleep problems common but poorly recognised (Stores, 1990)  Most health workers receive no specific training in sleep medicine (British Sleep Society,’97)  Over-reliance on old fashioned sedatives (“Vallergan”, etc.)  No evidence of efficacy in long term (Ramchandani et al., 2000)

5. Children’s Sleep Disorders: BACKGROUND (2)  Strongly associated with daytime behavioural problems for children and high levels of stress for parents  Most common forms preventable: most children physiologically capable of sleeping through night from 3-6 months of age  Minority of sleep-disordered children become chronically insomniac adults

6. Sleep Problems in Autism: the Myths 1. Are not serious 2. Are inevitable 3. Are short-lived 4. Cannot be treated

7. What are we talking about? Difficulty settling (falling asleep) Difficulty settling (falling asleep) Staying asleep (& waking at wrong times) Staying asleep (& waking at wrong times) Strange behaviours in & around primary sleep period (eg. sleepwalking) Strange behaviours in & around primary sleep period (eg. sleepwalking) Sleepy by day Sleepy by day Effects upon family and caregivers Effects upon family and caregivers

8. What are we talking about (really)? "...what happens when a child doesn't sleep? When night after night, year after year, a child wakes, cries and demands attention? That's when exhaustion takes over and life becomes a grey limbo, all thoughts of the future forgotten, our only concern to survive another day. It erodes the fabric of life, causing depression and resentment both of which are closely followed by overwhelming guilt, especially when the child is so disabled. Most parents who suffer this type of long- term sleep deprivation must do so in silence, their optimism replaced by resignation". "...what happens when a child doesn't sleep? When night after night, year after year, a child wakes, cries and demands attention? That's when exhaustion takes over and life becomes a grey limbo, all thoughts of the future forgotten, our only concern to survive another day. It erodes the fabric of life, causing depression and resentment both of which are closely followed by overwhelming guilt, especially when the child is so disabled. Most parents who suffer this type of long- term sleep deprivation must do so in silence, their optimism replaced by resignation". --- mother of a 12 year-old autistic boy (1990)

9. Why Treat a Sleep Problem? Everyone benefits from a good night’s sleep Everyone benefits from a good night’s sleep Promotes independence and fear resilience Promotes independence and fear resilience Improves daytime thinking, feeling and behaviour Improves daytime thinking, feeling and behaviour Prevents a chronic problem developing Prevents a chronic problem developing Prevents other problems Prevents other problems Helps people to make the most of their potential Helps people to make the most of their potential Keeps families happy Keeps families happy Prevents accidents Prevents accidents

10. Children’s Sleep Disorders: Prevalence Rates   20% of pre-school children (Richman, 1977)  10% of school age children  40-50% of children with severe learning disabilities (Pahl & Quine, 1984)  Up to 2/3 of ASD children and adolescents (Hoshino,1984)  75% of children with profound learning disabilities (Hogg & Lambe, 1988)  25% of adults (ASDA, 1990)  Most parents of ASD/SLD children have sleep problems

11. Children’s Sleep Disorders: (1) COMMONEST TYPES Pre-School: - “colic”, night settling, night waking and early waking; rhythmic movement disorders; bruxism. Early School Years: -nocturnal enuresis, fear of dark; night-terrors; sleepwalking; nightmares; night-settling problems Teenage Years: -adult-type insomnias, delayed sleep phase disorder, poor sleep hygiene.

12. Children’s Sleep Disorders: (2) SOME RARER TYPES Obstructive Sleep Apnoea ( large tonsils, Down Syndrome, storage diseases, pathological obesity). Narcolepsy: catalepsy, cataplexy, hypogogic hallucinations (genetically determined) Nocturnal forms of epilepsies: frontal seizures

13. Why do Autistic People Have High Rates of Sleep Problems? 1.Part of challenging/difficult behaviours in majority of children, ie. extrinsic factors 2.Due to factor(s) linked to the disorder, ie. intrinsic factors 3.A combination of last 2 factors (intrinsic & extrinsic factors )

14. The Vicious Cycle of Sleep Problems Children who do not get adequate sleep Day time behavioural problems Improved sleep better behaviour by day However: Better daytime behaviour improved sleep (normally)

15. 1.Intrinsic Factors (1) (i) High Anxiety/Arousal  opposite to what promotes sleep (ii) Bedtime Routines & Rituals (and Repetitive Movements)  severe or inappropriate ones can affect sleep onset and maintenance (iii) Sensory Abnormalities  oversensitivity to sound or touch: uncomfortable bedroom and bedclothes

16. 1.Intrinsic Factors (2) (iv) Social & Communication Difficulties  social cues for sleep onset ignored (v) Melatonin  abnormalities of tryptophan metabolism?  abnormalities of melatonin secretion? (vi) “Sleep Architecture”  no consistent differences compared to controls  effects of epilepsy and its treatment

17. Extrinsic Factors: Medication Sedatives (“Vallergan”, “Phenergan”) -daytime sedation -paradoxical excitement Anticonvulsants (“Tegretol”, “Epilim”, lamotrigine) -all may produce daytime sedation and affect sleep architecture Others: thyroxine - stimulates in higher doses b-blockers - nightmares diuretics - bedwetting salbutmol inhaler - stimulates

18. Children’s Sleep Disorders: Assessment 1. General assessment inc. physical exam 2. Mental State ( anxious, depressed, etc ?) 3. Sleep history + diary data 4. Sleep habits of family (sleep hygiene) 5. Sleep environment (inc. type of bed) 6. Special investigations Eg: Polysomnography for OSA and nocturnal epilepsies, genetic tests for narcolepsy, overnight videotaping for parasomnias

19. “There never was a child more deeply loved than when he was asleep” (R.W.Emerson)

20. TREATMENT: 1. Behavioural Modification Many research studies support this general approach (Richman et al. 1985) Works for LD children (Quine & Wade, 1991) Few studies directly involving ASD children Involves: use of “sleep diaries”, extinction, cueing, sleep hygiene, rewards Efficacy: 75% plus! Parents/carers: implement therapy Treatment of choice for most childhood sleep problems (especially night settling and night waking problems)

22. TREATMENT (contd.) 2.Medication  Stimulants and anti-depressants for narcolepsy  Sedative hypnotics for short-term insomnias of adolescents (NB: sedatives are contra-indicated in infants)  Melatonin in severe, refactory cases 3.Surgery  Adeno-tonsilectomy for OSA

23. Dr Bramble’s “Ten Steps to a Quiet Night” 1. Make bedroom safe, secure and unstimulating. 2. Set regular bedtime and waking time and stick to it. 3. Avoid stimulating activities (rough play, loud music, TV) in the hour before bedtime. 4.Pre-bedtime settling routine (use symbols and other aids). 5.Rapid settling in bedroom (less than four minutes); use your “magic phrase”; leave bedroom; lights off; door closed. 6.Ignore thereafter (unless physically unwell). Put back without fuss if he/she gets up during the night. 7.Don’t give in - you will only train your child to get worse if you do! 8.Praise and cuddles (if tolerated) once awake in the morning following a good night 9.Initial worsening of the problem means it is working 10.Stick to this and your child (children) will learn not to disturb you during the night.

24. “Ten Steps to a Quiet Night” CAVEATS: 1.Chose a good time (ie. no holidays or special events pending) 2.Child and parents must be in optimal health 3.Move bedroom furniture around or change bedrooms 4.Support and encourage other children 5.Discuss progress with a friend, Health visitor &/or teacher 6.Warn the neighbours of risk temporary disruption 7.If possible, brief child thoroughly before and throughout treatment 8.Wavering parents need to back one another up 9.If illness suspected pause until physically well again 10.Persist and it stands a good chance of working in: 3 to 4 nights!

25. Graded Withdrawal (For children who insist on parent’s presence at night) 1.Place mattress on floor next to bed and switch bedroom light off 2.Lie next to child on bed for 3 nights 3.Lie on mattress next to bed for 3 nights 4.Move mattress by two feet closer to door every 3 nights 5.When at the door sit on a chair in the bedroom with door open for 3 nights 6. Sit on a chair outside the bedroom but visible to child with door open for 3 nights 7. Sit on a chair outside the bedroom not visible to child with door open for 3 nights 8. Sit on a chair outside the bedroom with door closed for 3 nights NB: If child tries to join you, return to bed with no fuss, no eye contact

26. Controlled Crying (For children who wake and cry but parent cannot ignore) 1. Discover whether there is anything worrying him/her 2.Establish how much crying and distress you can tolerate (eg. 10 mins). 3.When child awakes and cries, wait 10 mins and go in. 4.Instruct to return to bed (if necessary) in emphatic manner 5.No cuddles, food eye contact, etc.) 6. Reassure simply and leave after 15 secs 7.Wait for 10 mins and repeat (if necessary) 8. Extend by a set number of minutes on subsequent nights.

27. Scheduled Awakening (Another way of addressing night waking problems) 1. Discover from sleep diary data when exactly your child habitually first wakes up during the night 2.Set your alarm clock (or stay up!) for 30 mins before this time 3.Wake your child up by gently touching him; when he opens his eyes let him fall back to sleep 4.If your child does not fall back to sleep, try 45 mins the following night and, by trial and error, you will find the best time to wake and fall back to sleep quickly.

28. Restricting Sleep (Another way of ensuring that a child is sleepy at bedtime*) 1. Discover from sleep diary data how much sleep he/she is having each night (av. per night in hours) 2.Calculate 90% of this and make this the new sleeping time (delay bedtime &/or waking time) 3.If lying awake quietly occupy in another room until sleepy and return to bed 4.Avoid naps during the day and oversleeping at weekends 5.Never restrict below 5 hours 6.After a week move settling/waking time by 15 mins 7. Continue until desired pattern is acquired *as long as he/she isn’t sleepy by day

29. Melatonin Melatonin (1) Growing use in UK practice Most generic C&A specialists now prescribe Increasing evidence base for use with learning disabled, ASD and visually impaired Established treatment of “jet lag” Safe agent? (Probably) Overall efficacy c. 75% (Smits et al. ‘01; Ross et al. ‘02) Problems with prescription and supplies GPs unfamiliar with or wary of agent

30. Melatonin (2) Melatonin (2) Natural Sources 1. Exposure to sunlight in mornings 2. Foods that contain melatonin: oats, sweetcorn, rice, ginger, tomatoes, barley. 3. Foods containing tryptophan: cottage cheese, instant breakfast cereals, poultry, milk, nuts (esp. almonds & peanuts) 4. Vitamins (B6, nicotinamide) and minerals (calcium & magnesium): these promote melatonin production Avoid Melatonin Depleting Agents 1. Caffeine (coffee, tea, cola drinks, chocolate) 2. Drugs: aspirin, steroids 3. Strong electromagnetic fields: TVs, clocks, baby monitors, electric blankets within 1.5 metres (~4 feet) of bed

31. Melatonin (3) Use only for refractory cases or for crises Discussion of its unlicensed status and safety profile Start at 2 to 5mg nocte (immediate-release formulation), and may be increased up to 12 to 15mg nocte Regular monitoring of response (by phone) Slow- or controlled-release preparations and alternate-night, PRN or tapering doses can be used Trial withdrawal for a night or so in order to test ongoing need. Some patients may require long-term treatment (growth and other developmental parameters should be measured) Patient information leaflets, treatment advice summaries and blank sleep diary sheets should be provided. Melatonin therapy should be under specialist review but care may also be shared with GPs

32. Miscellaneous Other Techniques “Social stories”, “PECS” or other symbolic communication system Bedroom door “modifications” Spy holes or CCTV Lock up other rooms, cupboards and ‘fridges Sleep suits Sleep systems (“Safe Space”)

33. If all else fails: 1. 1. Stop, have a break, and try again 2. 2. Reflect upon how and, possible, why the treatment didn’t work 3. 3. Respite care (for LD children) 4. 4. Major tranquiliser drugs (short-term only) 5. 5. Request a second opinion 6. 6. Refer to Sleep Disorder Centre

34. Prevaricating Penny Penny is five years-old and attends mainstream school. At her home, every evening she has to watch her favourite “Thomas” video three times (~4 hours) before falling asleep on the settee in front of the TV. Her father carries her upstairs at 11pm, gently dresses her in her “Thomas” pyjamas (specially warmed up by her mother), puts her favourite “Thomas” tape, reads her favourite “Thomas” book to her on and then lies with her until she is asleep again (< 60 mins). Usually, she sleeps through (usually) until 6 am when she gets up and watches her video again (once). Should anything interrupt this routine she will become extremely upset, scream and lash out at her family. She manages to settle to sleep at her grandparents’ house by herself and without “Thomas’s” help! His teachers have commented upon her particularly difficult behaviour in the afternoons. Q1. What’s the sleep problem? Q2. Who’s affected? Q3. How would you help Penny?

35. References Specific advice for parents: 1. Confederation of Service Providers for People with Autism. (2002) Learning to sleep. In: “Living with autism – learning to manage”. CoSPPA (tel/fax: 01569 763309) 2. Dr. John Pearce (2000) “The new baby and toddler sleep programme”. Vermillon

36. Children’s Sleep Disorders SLEEP AWAKE