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SLEEP ISSUES Children who insist on parents' presence Graded withdrawal: 1. Lie next to child on bed for three nights 2. Lie on mattress next to bed for three nights 3. Move mattress closer to door every three nights 4. Sit on chair in bedroom at door with door open for three nights 5. Sit outside door whilst still visible to child for three nights 6. Sit outside door not visible to child for three nights 7. Sit outside room with door closed for three nights. Social stories could also be used to reassure your child that they are safe when sleeping or in bed alone. Please see the 'Useful fact sheets' section for further details. For night waking Scheduled awakening: 1. From sleep diary, see when child wakes up during the night 2. Set alarm clock for 30 minutes before this 3. Wake child and allow to fall back to sleep 4. If child doesn't fall back to sleep try waking 45 minutes before on the next night and experiment until you find the best time. To ensure your child is sleepy at bed time Restricting sleep: 1. From sleep diary, see average hours of sleep per night 2. Calculate 90% of this and make this the new sleeping time (delay bedtime and/or waking time); never restrict below five hours 3. If lying awake, occupy in another room until sleepy 4. Avoid naps in day/oversleeping at weekend 5. After a week, move settling/waking time by 15 minutes - continue until desired pattern of sleep occurs. Summary None of these suggestions can be guaranteed to work in themselves. You may find that a combination of them proves most effective. 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. When implementing these strategies it may be that the problem gets worse before it gets better. However, it is important to remain consistent in your approach. Rewarding and praise following a better night's sleep will help to positively reinforce it. 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 disorder 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 (for example, 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, you are already improving your chances of not being disturbed. In the Parents' 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. Please see the NAS informatiom sheet Creating an autism-friendly environment at www.autism.org.uk/a-z Getting respite All parents of children with disabilities are entitled to be assessed to see if they are eligible for 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 respite support, you should contact your local social services department and request an assessment of need for your child and a carer's assessment for yourself. See our information sheets Caring for a child with ASD or Getting help from social work services - Scotland for further details. Both can be found at www.autism.org.uk/a-z FOOD ISSUES When developing a plan for expanding the number and variety of foods a child will eat, it is important to be calm and not controlling. In fact the most successful experiences are when the child is given some control or at least they perceive that they do have some control. Struggles over eating most often make matters worse. Gradual exposure to new foods can be very important. Frequently, in despair, mothers will offer a different array of several new foods each day hoping that by chance the child might try something. The more choices the more chance of success, sounds like it makes sense, but not for a child on the autism spectrum. Gradually introducing a new food will help the child to become desensitized to the smell, look and possibly feel of an unfamiliar food. If a new food is chosen that has highly desirable sensory qualities to the child, you will have a better chance at success. Start with a food that has the “best” sensory fit. Offer the food on a daily basis by putting it where the child will be able to desensitize to it. Think of how your child might best accept a new item in his/her space. Frequently a small separate bowl or plate in close proximity to the child’s seat will work. Sometimes a child can tolerate the new item on his or her plate as long as they understand that the only expectation is that it will just stay on their plate. Repeated exposure of the identical food item should be offered once or twice a day, at meals, with no expectations attached. Sometimes this technique paired with others in the family, especially a sibling, modeling the enjoyment of eating this new item, can make it easier for the child to try tasting it. You may try the same food item for two or three weeks. For children who respond to Social Stories (Gray, 2000; Gray & White 2003), information can be offered in this format, at times other then mealtime. In the Social Story, focus on the wonderful benefits of trying this new food. Sometimes, in the Social Story, describing a favorite character like Barney or Spiderman eating this particular food gets them interested enough to taste it. If desensitization, modeling and a social story have not resulted in the new food being tried, the strategy of offering alternating small bites of a highly desirable food with a small bite of the new food is another option. As always, it is important that this technique not be made into a battle. The idea is to make trying a new food as pleasant and successful as possible. This is a common strategy that is used for all children. The information can be made visual (by putting the different bites in view on the plate) along with the instructions “First favorite food, then new/undesired food, and then favorite food.” An example might be “First macaroni, then peas, and then macaroni.” Both of these approaches for introducing new foods are positive and non-threatening to the child. The child can feel like s/he has some control. Children do not want to be tricked. Tricks such as hiding “extra” vegetables in spaghetti sauce and or supplements in a child’s favorite drink do sometimes work but can also backfire. Sometimes, after detecting “additions” to familiar favorites, the child learns to be suspicious of all foods and will limit his/her diet even further. This strategy probably works best when the sensory characteristic the child is focusing on is the “look” of the food. If a child is more sensitive to the smell, taste or texture of a food, it may be harder to make “additions” because they are usually easier for the child to detect. Be cautious when using this strategy. The auditory sense is generally not directly related to eating and feeding issues. Indirectly sounds can contribute to the comfort of the actual environment where eating and feeding take place. It is very common for individuals on the autism spectrum to get overwhelmed in noisy and crowded environments such as a school cafeteria or McDonalds on a Saturday afternoon. It is important to accommodate individuals’ needs so that the environment itself is not preventing successful eating because of sensory overload. Some children take longer switching from a bottle to a cup or learning to use utensils. Part of the issue is that change is hard for these children in general. The sensory issues can also be a partial reason for this difficulty. A desensitization plan for using a cup and/or utensils can be developed. If the problem is severe, an occupational therapist with sensory integration training may be helpful in suggesting desensitization techniques. Sometimes adaptations are possible and appropriate such as allowing the use of plastic utensils instead of metal. In addition to the sensory properties of foods and the sensory stimulus in the environment affecting the child’s ability to eat in a particular environment, a third common issue is the ability to sit at a table and eat a meal with others. There are a number of reasons why this may be difficult. Eating at a table with others is a social activity. Eating may not be a very motivating or rewarding activity in itself. Pair that with the social issues involved in eating with others and you may begin to better understand the situation from your child’s perspective. Additionally, many of our children are active and have a hard time staying still in one place no matter what the activity. There are several possibilities to address when looking at the issue of sitting at the table with others to eat. Determining the reason your child is not able to sit at the table will help in deciding what to do to address your child’s needs. Some children need to organize their bodies with a little physical activity before they are asked to sit at a table. Sometimes a timer needs to be set to show more concretely that sitting is expected at mealtime, at least for a few minutes until the timer rings. The length of time a child is expected to sit may be gradually lengthened so success is built up slowly. Some children can sit and eat quickly at the table but will not be able to sit and wait for others before being served and/or after they have finished their food. This inability to wait can sometimes be addressed with special waiting toys or activities. Sometimes items to focus on while waiting are helpful. Even some older children and adults on the autism spectrum have a need to develop waiting strategies to use at mealtime while eating with others. In this situation, bringing something to read or a pocket sized game to focus on while waiting, is a positive coping strategy for older children and adults, too. Eating and feeding problems can sometimes dominate family life. It is easy to get overwhelmed when eating problems are severe and are so closely tied to your child’s health and development. The fact that mealtime occurs at least three times a day, and families and children are not always able to eat at home, adds to the stress. Get help for any biomedical and behavioral concerns. After those areas are addressed, families’ can often tackle the environmental factors by calmly working to desensitize the child to new foods with structure and a non-controlling plan for trying a new food. The expectation to sit and eat at the table can be structured in small steps and paced so the child is successful. Patience with this process is also a key to success. Network with other families to share successes and failures, and to gather new tips or resources that can make a difference. Also when you reach out to others you will be reminded that you are not the only one coping with these challenges! If a child is very sensitive to certain textures such as soft', 'slimy', 'squishy', then he will naturally tend to avoid foods such as some cheese and egg preparations, or dal and rice mixtures. Each child's sensitivity is different and we need to be aware of types of foods that may be bothersome. Once we are aware, since we also know that it is a part of their autism and they are not just being difficult, it becomes very important to be accepting. It will also keep us form forcing the child to eat foods that he cannot tolerate. As the child learns to be comfortable at his eating place and can feed himself, then one can begin to introduce new foods. New foods must be introduced in extremely small quantities along with a much desired food. For example, if the new food is half a segment of orange, and the desired food is a biscuit, tell the child, "Finish orange, then have biscuit". Similarly with other foods also you can use phrases like "one bite, then biscuit", or "eat orange, then biscuit, etc. With children whose ability to tolerate is very little, you can even begin by asking the child to "take one lick" or "taste once" and then promptly allow him to receive the favoured food. Each time the child tries even the smallest bit of a new food, cheer and praise him as if he has won an Oscar. Let him know that you feel proud that he has done so despite his difficulties. The child may or may not try the new food. Sometimes he would rather skip the favoured food than consume a bothersome food. Don't let this discourage you. Keep trying again and again with different foods. If the child feels accepted and understood, he will make the effort to try a bit. Another method of encouraging new foods is that at mealtimes put tiny pieces of undesired foods on the child's plate. There is always the possibility that he might try it. If he does, praise profusely. If not, make no comment, but try again some other time. Sometimes when the child does pick up and eat a new food it excites those around him, and he is immediately given more and larger pieces of the food. This is best avoided. Unless the child requests more, wait till the next mealtime to serve him more. These methods need to be tried in many different places at different times so that the child learns to eat a varied diet, making mealtimes easy to deal with.
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