Getting a good night's sleep

My toddler was recently diagnosed with Autism spectrum disorder, I have always slept with him in my bed. Now that he is 3-1/2, I want him to sleep in his own bed. I also am in a relationship where it is causing alot of stress between us because of his sleeping habits and I know it was my fault. Everything was just easier to just have him sleep with me. Now that all this has come up we are trying to get him into a sleeping routine. And its a nightmare. He cries for over an hour and if he falls asleep its for about 2 hours and he is up crying again. Fighting screaming he has asthma also and screams so much he caughs & throws up. I know that I need to have him on a consistant schedule and that will help him But I need help helping him

He became obsessed with locking every door. So on his bedroom he kept locking himself in it so I had put one of the baby door things on the knob so he can’t open the door, well somehow at night the door was closed and he got up and I didn’t hear him and he tore his bedroom apart. Broke lamps knocked everything down. I was so scared because he could have really gotten hurt. I have since taken that off his door knob. But another night when he was forced to stay in his room he did the same things. I just don’t know what to do. I hate to spank him to make him stay in bed.

SLEEP PROBLEMS

1 suggestion… since these kids like predictibility and routine and resist change… DONT START SOMETHING YOU DONT WANT TO HAVE CONTINUE.

SO here are some suggestions to try

Some say its a chemical imbalance with the seritonin levels in their body… many swear by giving their child supplements like Melatonin PLEASE CHECK with your childs dr to find a safe amount if you choose this route

Melatonin for Sleep Disturbances in Children

For me part of the help was a small dosage of Clonidine …. even now at 9 1/2 without medication he can not fall asleep until well after 1 am!

** ALSO NOTE keeping a journal of when your child sleeps and is awake daily behaviors and so forth is a good idea.. sometimes it gives you better knowledge os what is going on when you can look back over the past several days or weeks and start seen a predictable pattern with your child.

Reward chart

Calming Activities like heavy loading or deep pressure massage

Many believe this is sensory related.. I will include some links here

How to know if its sensory / What to do *NOTE this also includes calming activities*

Sensory Integration – Must Read

Sensory Defensiveness & Sensory Diet

Sensory Integration & Teaching Strategies

Bed tents – they block out the outside stimuli providing a calming and quiet environment for the child to relax and go to sleep Many special needs catalogs sell them here are some links to various places

http://www.target.com/gp/browse.html/601-3573889-0737750?%5F encoding=UTF8&node=13419891

http://froogle.google.com/froogle?q=twin+size+bed+tents& hl=en&lr=&sa=N&tab=ff&oi=froogler

*** Just type in a search for TWIN SIZE BED TENTS and something should come up***

WEIGHTED BLANKETS! This has been the final thing to really help my son and many other kids here! It isnt 100% but for my son its been 98% I never would have believed if someone had said he would sleep through the night from day 1 but he did!

http://www.specialkidszone.com/Product_Level3.asp?ProductID= 1368

http://www.beyondplay.com/CATALOG/SEN3.HTM

http://www.calmcomforts.com/blanket/blankets.htm

http://www.theraproducts.com/index/page-catalog/main-8161/su b-8289/

http://www.saltoftheearthweightedgear.com/fabricspage.html

http://www.weightedblanket.net/

http://www.myweightedblankets.com/pricing___orders

Here is some general info about Sleep problems in ASD kids….

http://www.angelfire.com/tn3/task/sleep.html

http://aut.sagepub.com/cgi/content/abstract/5/2/209

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=367&a=3376 Helping your child with autism to sleep better

The Autism Helpline receives many calls from parents experiencing difficulties helping their children to sleep.

Learning to sleep through the night is something all children have to do. It may take a little longer for some than others, but sleepless nights when a child is young are an almost universal problem. However, for some children learning to sleep through the night is a difficult and seemingly impossible process. This, in turn, can have an enormous impact on their families.

We should stress that helping your child to overcome their sleep disorder will not be easy. Most experts would recommend that you ask for advice and support from somebody outside your immediate family. An ideal person would be an expert in sleep disorders, this might be a child psychologist or psychiatrist or a paediatrician. However, getting a referral to a suitable professional can be very difficult. You could approach your GP or social worker first and you might also be able to get support from your local Family or Child Development Centre. It is also worth liaising with your child’s teachers to ensure they are aware of the problems and also that they can support your child adequately. They may be able to contribute to keeping a sleep diary and you can also ask them to let you know how alert your child is during the day.

How do you define a sleep disorder?

By the age of one year most children should be sleeping through the night. If after that time your child is regularly unable to sleep or if they have a period of good sleep which is disrupted then this constitutes a sleep disorder. It is important to be aware that all children are likely to have brief periods of poor sleep after illness, during holidays and festivals like Christmas or during periods of particular stress such as exams or if somebody close to them is ill. After events such as these a normal sleep pattern should be established again within a few days.

It is also important to be aware of your expectations: children cannot go to bed early and wake up late. They will not remain asleep for more than a certain period of time. There are no guidelines on how long a child should sleep; how much sleep a person needs can vary considerably. On average the amount of sleep a child needs per night decreases by a quarter of an hour per year until the age of 16. So a five-year-old needs an average of 11 hours sleep a night and a 16-year-old needs an average of eight and a half hours a night. But these are not hard and fast figures and you may have a 16-year-old who needs ten hours sleep a night or a five year old who only needs seven.

If you think your child may have a sleep disorder and you want to get an idea of the extent of the problem it is a good idea to keep a sleep diary.

Why keep a sleep diary?

Sleep diaries can be useful for a number of reasons:

• They can help to establish any unusual patterns of sleep. In the example attached (see Appendix 2 at the bottom of this page) Jo actually sleeps for seven hours a day but takes a nap after returning from school which then disturbs his sleep at night. If over a period of time this became a consistent pattern his parents could think about ways of keeping him stimulated after coming home from school. In time he might begin to sleep more at night and less during the day. It is also clear that his most disturbed night follows the time away which he spends with his Gran. This suggests that consistency and routine are very important to Jo.
• If you do decide to try any routines or behavioural modifications to help your child to sleep then the sleep diary will allow you to see if what you are doing is working consistently, sporadically or not at all.
• You can show a sleep diary to professionals involved in your child’s life, such as teachers, GPs or social workers, to give them a clearer idea of the impact your child’s sleep patterns are having on the child, you and your family. People may assume you are exaggerating if you tell them you only get an average of two hours sleep a night but if you can show them charts with times specified they may take more notice.
• Certain benefit applications, for example the Disability Living Allowance (DLA) form, ask you to specify how much your child sleeps and how often you have to get up in the night to help them. You can send in a copy of the sleep diary to support your application.
• For more able children with autism a sleep diary can act as a visual reminder of their disruptive sleep patterns. They can then be used to establish incentives for staying in bed and trying to sleep, eg a gold star for every night when the child doesn’t get out of bed plus a small reward if the child doesn’t get out of bed for three nights in a row.

A sleep diary does not have to follow the format above. Appendix 3 (which can be downloaded at the bottom of this page) is a sleep diary form which you can modify for your own personal use. If you haven’t time to fill in details of the child’s routines then having a 24 hour format and using shading to indicate when the child is asleep can be a good way of showing exactly how much sleep you and your child are getting.

What causes sleep disorders?

The answer to this is likely to be different for every person. Unfortunately it seems that virtually all children with autism are likely to suffer from disturbed sleep patterns at some point or another. In her book Solving children’s sleep problems – a step by step guide for parents, Lyn Quine divides sleep problems into two main groups – settling problems where the child has difficulty going to sleep at the appropriate time and waking problems where the child wakes repeatedly during the night. This article will attempt to address both problems.

We don’t know why children with autism are so vulnerable to disturbed sleep, but Donna Williams, who has written extensively about living with an autistic spectrum disorder, describes her fear of falling asleep in her autobiography:

“Sleep was not a secure place. Sleep was a place where darkness ate you alive. Sleep was a place without colour or light. In the darkness you could not see your reflection. You couldn’t get ‘lost’ in sleep. Sleep just came and stole you beyond your control. Anything that robbed me of total control was no friend of mine.”

From Somebody Somewhere by Donna Williams

“I was afraid to sleep, always had been. I would sleep with my eyes open and I did this for years. I guess I did not appear to be terribly normal. ‘Haunting’ or ‘Haunted’ would have been better adjectives. I was afraid of the dark, though I loved the early dawn and dusk.”

From Nobody Nowhere by Donna Williams

These descriptions are subjective and do not necessarily describe the experience for everyone. They do suggest that Donna had more problems with settling than waking. We don’t know which problems children with autism are most likely to suffer from although we are aware of children who have problems with both.

In Donna’s case her fear of the unknown prevented her sleeping and this may well be true for some children with autism. For most children with autism this is unlikely to be the only explanation. Many children will have disturbed sleep as a result of a number root causes.

Waking problems may in some cases be a continuation of settling problems – like the child who wakes up to go to the toilet but then finds it difficult to fall asleep again. In very young children waking problems are an indication that they still haven’t developed mature sleep patterns. As babies they woke up to feed every couple of hours and this pattern hasn’t yet been eradicated. In the older child with autism there may be an indication that they suffer from sleep disturbances. This could mean anxiety making it difficult for them to fall into a deep sleep or acute nightmares. Although many experts would suggest approaches to waking problems such as bed-time fading – where you look in on your child when he/she wakes but for shorter periods each time so that they learn not to rely on this behaviour for attention – we would suggest that attention is unlikely to be the autistic child’s motivation. Instead coping with waking problems may require consistent re-assurance on your part and a creative approach to your child’s needs.

One child was unable to make the switch from sleeping in his parent’s bedroom to sleeping in his own room. To deal with this his parents slept in his room with him for a few nights and then moved to sleeping in the passage outside his room and slowly moved back to sleeping in their own bedroom. Although this approach may seem quite intrusive it worked because it acknowledged that the child’s fears about sleeping alone were very real. Rather than forcing a confrontation they gave him the re-assurance that his parents were never far away should he need them.

Alternative explanations include:

Social sense Children with autism may have difficulty understanding why and when they need to sleep. Problems with ‘social cueing’ – that is learning why and in what order things should happen are common in autism and this may mean your child does not make the connection between their family going to bed and their own need to sleep.

MelatoninThis is a hormone secreted by the pineal gland which has been shown to regulate sleep patterns in animals. There have been studies conducted which have shown that taking melatonin supplements can help to ward off jet-lag after long journeys. It is also thought that in children with autism their patterns of melatonin secretion may be irregular – so it is not that they don’t produce it but that they don’t produce it at the right times of day.

Melatonin supplements must be prescribed in the UK. For further information you should consult with your GP. Some foods are rich in melatonin such as plums, bananas and brazil nuts but current research is not clear whether a melatonin rich diet could be effective in helping children to sleep.

Too much information Children with autism can have significant problems with hypersensitivity to touch, visual stimuli or sound. This can be both distracting and distressing and make the process of falling asleep very difficult.

Allergy and food sensitivities Children with autism are perhaps more likely than their peers to be sensitive to those foodstuffs like sugar, caffeine and additives which can keep people awake. If your child frequently has sweet or caffeine-rich drinks and foodstuffs near bed time then it is worth checking out whether this could be disturbing their sleep.

What can we do?

Medication Medical interventions are typically seen as a last resort in treating sleep disorders in children as they can be habit-forming and they don’t treat the root cause of the problem. As a general rule it is better to minimise the medication your child is on but at certain times it may be desirable to have a mild sedative to hand; for example, if you are going on holiday and are concerned about the consequences of jet-lag, or if you feel that your child’s health is genuinely suffering as a result of their poor sleep. Most GPs will be prepared to prescribe under these circumstances.

Some parents have also found that using medication in tandem with a behavioural approach can help to restore a good sleep pattern. The combination is crucial as without the behavioural intervention when the medical treatment ends the child is likely to return to their old sleep patterns.

Natural remedies Many of the natural remedies available from health food stores are supposed to treat insomnia and other sleep disorders. These may well have the same consequences as conventional medicines and it is likely that only continually taking the medication will prevent problems. However, they may carry less risk of side-effects than conventional sedatives. If you would like to try this approach then we would recommend that you get in touch with a homoeopath. You can find details of a local qualified homeopath by calling the Society of Homoeopaths on 01602 21400.

Removing stimulants from the diet If you are already keeping a sleep diary then monitoring this should not be a problem. If you are not then I would advise you at least to start keeping note of when your child sleeps so that you can monitor any improvements.

Changing your child’s bedtime routine can be stressful and if they are used to having certain drinks or snacks near bedtime suddenly switching to something different may be counterproductive. However, you could change to decaffeinated tea, coffee and Coke, replace ordinary chocolate with sugar free chocolate bought in health food stores, use carob powder to replace cocoa and chocolate, switch to sugar-free Ribena and replace sugar in drinks with sweetener. Alternatively you could try gently phasing certain foods out over a period of days or weeks so that your child is consuming less and less sugar and caffeine overall without having anything suddenly taken away from them; for example, you could offer them one biscuit instead of two, put just half a spoonful of sugar in their tea and mix decaffeinated and caffeinated drinks together. This has the other advantage of ultimately reducing your child’s taste for sweet foods which can help improve oral hygiene.

Some people advocate making radical changes to the child’s diet like completely eliminating sugar and caffeine. We would suggest that this is only worth doing if you have already tried a more moderate approach. We would also suggest that you should visit a dietician before introducing any major changes in order to ensure that you continue to offer your child a balanced diet.

Using relaxation techniques We all have difficulty sleeping if we are feeling wound up when we go to bed. Settling off when a lot has been happening or when we are feeling emotional can be very difficult. Children with autism may not be able to articulate their need to unwind and relax. Additionally, they may feel more anxious and confused around bed-time.

Relaxation techniques can be introduced in low-key, non-intrusive ways in many areas of family life. Typical bits of advice might include:

• Adding a few drops of lavender oil to your child’s bath as this has been shown to have a soothing effect
• Giving your child a massage. Direct skin contact can be unbearable for children with autism but some types of massage such as shiatsu can be conducted through clothing. A gentle foot, hand or scalp massage in the right environment might well be effective in helping you child to calm down before going to bed.
• Introducing an hour’s quiet time before the child’s bed-time could serve two purposes. Doing a quiet activity perhaps with help from you or a sibling could help them unwind and it also provides a valuable social cue. If everyone in the house is quiet and relaxed then the message the child receives is consistent, not mixed as it is if the house is still lively and noisy even though the child is expected to sleep. Clearly introducing a quiet period in the day could be easier said than done but you could start with small things such as suggesting the TV is turned off for that hour and nobody plays music. It may take a while to get into this pattern but it could have a huge impact when you do.
• Many experts have said that teaching formal relaxation techniques to people with autism can be counter-productive as they may find them more distressing than relaxing. Some people advocate using exercise as a way of winding down and this does have some merits. Physically exhausting your children is a good way of ensuring that they sleep!
• Many children with autism enjoy rough and tumble play. Although this may seem to be the opposite of the points made above regarding quiet time at the end of the day it might well be more effective for some children. You will know best whether your child falls into this group.
• However, some parents have found formal relaxation aids such as tapes of music and exercises very useful. These aids are widely available and you can judge for yourself as to what your child is most likely to respond to. Some parents have reported having a lava lamp in the bedroom can be very helpful. Enclosed is an article about a school which tried using relaxation techniques with its children with autism.

Establishing a routineChildren with autism respond well to routine and structure because it allows them to feel safe and in control. Although sticking to routines can be frustrating during the day, setting up a routine that fits in with your family’s needs and helps your child feel calm by the time they go to bed could be very helpful. To do this effectively you will need to look carefully at the routine your family follows at the moment. Things to look for include:

• Is it possible for you to eat dinner at the same time each night? Do you do this already? Is this quite late in the evening or quite early?
• Is it possible for your child with autism to have a bath at the same time each night?
• Is there anything about your child’s routine that can only be done in your home? This could be something like playing on a particular climbing frame or having their own space for time out in the evenings.

Essentially an evening routine needs to be fairly simple, with scope for flexibility. This means if you go away or your child goes away then the bare-bones of it can still be preserved. I would suggest something like:

6:30 – Dinner7:00 – Quiet time7:45 – Drink and a piece of fruit8:15 – Bath8:25 – Clean teeth8:30 – Bed time

Essentially, whatever routine you try to impose needs to be something you feel comfortably implementing and that your family can agree on. And it may take several weeks for it to alter your child’s sleep patterns.

Making sleep more comfortable Sleep, as Donna Williams describes it, sounds pretty uncomfortable. If that is what your child is experiencing then it is not surprising if they get a bit agitated near bed-time. But there are ways of working with your child’s fears to help them.

Some children are exceptionally sensitive to light so sleeping when there is even a very dim light on could be very difficult for them. Fixing up thick curtains which will block out as much light as possible in your child’s room could be helpful. Similarly, some parents have found that their children can be woken by very slight sounds at night. Aside from general advice about having a thick carpet in the room and making sure the door shuts properly, other parents have tried a more specific approach. One family found that after their child with autism had gone to bed she could be woken by the noise of their changing in the bedroom next door. To solve this they moved her bed to the other side of the room and built shelves and cupboards along the wall which corresponded with their room to act as sound-proofing. A more extreme approach was used by the family who installed a shower unit downstairs so they could wash in the evenings without waking their son up.

Touch sensitivity is extremely common in autism: some children experience certain types of touch as physical pain. Temple Grandin (a woman with autism) describes being unable to sleep if one of her legs touches the other so she always has to wear pyjama trousers even in the hottest weather. Others have described being unable to sleep with bed-clothes on and being unable to sleep with them off because of the cold. One mother found that her daughter responded well to a ‘heavy blanket’, this was made from thick blanket material like a quilt with the pockets filled with beans instead of down. Her daughter found the pressure of the blanket re-assuring and it works on much the same principle as the ‘squeeze-machine’ which Temple Grandin invented to help her learn to cope with touch.

Summary None of these suggestions can be guaranteed to work in themselves. You may find that a combination of them proves most effective. The best advice we can give is that close examination of your child’s sleep diaries is likely to give you the greatest insight into what is causing your child’s problems and which solution is most likely to work.

Getting some sleep yourself

It is not unusual for professionals to suggest that you sleep when your child sleeps. Anyone who has actually been in the position of caring for a child with a sleep isorder knows how difficult this is. We cannot just switch our bodies on and off like a light bulb. By the time you have eventually calmed your child down enough for them to sleep you may be far too wound up to sleep yourself. Your child may not choose to sleep at times which are convenient to you and if there are other children in the family they may need your attention when your child with autism is asleep. It is important to be assertive about your need to sleep. Sleep deprivation can be extremely dangerous (falling asleep at the wheel causes 20% of all fatal road traffic accidents) and can have a very negative impact on your overall health and mental well-being. So getting a proper night’s sleep is hugely important but this may be easier said than done.

Safety-proofing Making your child’s room safe can be one of the easiest ways to improve your own sleep. If you can fall asleep knowing that even if your child wakes up they cannot do any harm then you are already improving your chances of not being disturbed. In the Parent’s survival manual Eric Schopler quotes a number of parents who have found creative ways of achieving this. One parent installed a stable door in their child’s bedroom. In the evenings after the child had gone to bed but was still awake, the parents left the top half of the door open but the bottom half closed. The child stayed in the room but was able to call his parents should anything happen. This meant the parents had time to relax in the evenings before going to bed, could look in on their child without disturbing or distracting him and were able to respond quickly if the child had any accidents.

Getting respite All parents of children with disabilities are entitled to some respite services. Unfortunately there is no specified minimum and the amount of provision families receive can vary enormously. If you are not currently receiving any services then you should contact your social worker and if you don’t have a named social worker then you should contact your local social services department and ask to speak to the duty social worker.

My child sleeps too much

If you start keeping a sleep diary you may find that what you perceive as your child sleeping too much is more that your child sleeping at the wrong times; for example, sleeping in the mornings or not wanting to get out of bed at weekends. However, you may also find that your child really does sleep for far longer than you would expect, a condition known as hypersomnia.

There has been very little research conducted into the causes of hypersomnia or how much it affects children with special needs. Medical treatments available for the condition are restricted to stimulant drugs such as Ritalin which are not always effective. We would advise contacting your GP and asking for their advice or a referral to a paediatrician with experience of working with children on the autistic spectrum.

Children with autism may, however, have other reasons for appearing to sleep too much. For example, you may find that getting your child out of bed is difficult but this may have nothing to do with their need to sleep. Their bed or bedroom may be somewhere they feel relaxed and may have pleasant associations. We all feel reluctant to get up and get going occasionally. Children with autism, however, may also lack many of the incentives that motivate others. Many of the potential approaches you can use here are the same as for the child who sleeps too little.

• Try making waking up sessions as gentle and relaxed as possible. One suggestion from the Parent survival manual came from the family who woke their son up by sending their pet cat into his bedroom. This meant he got up in a good mood. You could try doing something similar with the child’s favourite toy or glove puppets.
• Try playing gentle music at around the time your child is waking up.
• Use breakfast as an incentive.
• Stick to the same structured routines each day.

For older children and teenagers this may not seem appropriate and these are the young people most likely to have motivational difficulties in the morning. It may be, especially for young people with higher functioning autism, that they have very real fears about the day ahead or they may be suffering from depression which has affected their motivation. Excessive sleep in this age-group could signify very real psychological problems and it is important to investigate these rather than dismissing excessive sleep as laziness. Again monitoring sleep may help to establish patterns which could indicate where the problems lie.

What else is out there?

We recognise that often the approaches recommended in books can be inappropriate for children with autism for a number of reasons. We also recognise that long-term lack of sleep can make it very difficult for parents to effectively implement a behaviour modification programme when their primary agenda is getting back to bed. For this reason we would suggest trying to get someone outside the immediate family to support you during this time. There are far too few specialists out there able to help parents of children with autism who have sleep disorders. But there are some and you can contact your GP, social worker or your child’s school for help and advice. You may also find that other parents have been in the same position and are able to offer their advice and expertise as well. If you are not currently in touch with your local group then you can contact the Helpline for details. The National Autistic Society also operates a telephone helpline service called Parent to Parent with parent volunteers operating as helpline workers. There is one free phone national number where calls are logged on an answer-phone and are then picked up by the relevant regional volunteer who will call you back. The direct line is 0800 9 520 520.

I know with my kids I had to take everything out of their room. They were not allowed to have any toys in there at all. They had a separate playroom for their toys. Sometimes I would let them sleep with just one toy. But that was it, just one. I got them used to going to bed at the same time each night. But also I would not doing any activities outside of the home after 6 p.m. Took too long to get them thru the transition and calm enough to go to sleep. Also I eliminated all sugar and caffeine. Even chocolate. Sure Gabe loves chocolate but I don’t give him any. Too irritable for the next three days.

Tammy

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