Parent Education on Sleep for Individuals with Autism Spectrum Disorder
Thursday, March 17, 2022, 12:14 PM
Sometimes it feels like nothing is harder than trying to function throughout the day when you haven&…
Sometimes it feels like nothing is harder than trying to function throughout the day when you haven’t had much sleep. Maybe you tossed and turned all night because you couldn’t get comfortable. Maybe it was too hot or you couldn’t get enough blankets to keep you warm. The overwhelming feeling of dread when the alarm goes off and you lay there wondering how you are going to get anything done when all you can think about is getting some sleep is daunting. While adults can express this dread and explain their below par performance for the day, following a sleepless night, children may not be able to explain that to adults in words. They may seem upset, cry, not focus on activities, demonstrate challenging behaviors, or just not seem like themselves. A bad night’s sleep can affect the whole day, even for children.
Children with autism have been shown to have increased sensory sensitivity which can contribute to struggling with sleep. This can be linked to sensory preferences not being met. Sensory preferences involve sensations such as smell, taste, sounds, sights, textures or movements. Children with autism may be very sensitive to these sensations. Have you noticed your child avoiding clothing that is made from a specific material or running away from certain sounds? Maybe you’ve noticed your child presenting with challenging behaviors when a room is too loud and bright. Sometimes these reactions to sensations are obvious and sometimes they are subtle.
Imagine yourself standing in a crowded room full of strangers. There are flashing lights from a TV screen in the corner and music playing loudly in the background from the radio. As more people enter this small room they start to bump into each other and the temperature starts to rise. You feel yourself getting overwhelmed and wanting to leave. Your heart rate is increasing and all you can think about is how you are going to get out of the room. While this may be an extreme example of your senses on overdrive, children with autism may feel this way even when the room is not crowded, loud, or cluttered. Each child is different and has different sensory preferences that may impact how they perceive their environment. Taking time to observe how your child reacts to different sensations can help guide you in determining how to modify the environment or bedtime tasks to promote your child’s sleep success.
Environmental modifications (Richdale & Schreck, 2019; Tzischinsky et al., 2018)
Now look around your child’s sleeping environment.
Noises
Does the furnace make noises at night? Is the room too quiet?
Lighting
Would a night light help soothe your child or maybe they prefer it darker? Would black out curtains be the solution?
Smells
Are there essential oils diffusing in the room? Did you light your favorite candle that has left a scent behind?
Does the detergent leave a fragrance on your bedsheets?
Room colors
Are the colors of the walls relaxing or very busy?
Are there a lot of toys that the child loves to play with that may be a distraction when it comes to falling asleep?
Temperature
Temperature in our home’s change as the temperature outside changes. Not to mention each room may not heat or cool the same.
Does your child prefer to sleep in a cold environment snuggled in blankets or a warm environment with no blanket?
Fabric used on the bed.
Fabric of their night clothes.
Is there a fabric that the child prefers or tries to avoid? Do clothing tags bother your child?
Mattress firmness/ softness
Children with sensory preferences may be affected by all or some of these listed items. While looking around your child’s sleeping environment, consider the small things you can change first. Only change one thing at a time and then wait a week to determine if that change had a positive impact on your child’s sleep. Did the change improve behaviors or cause more aversions?
Daytime behaviors (Tatsumi et al., 2015)
Believe it or not, activities that your child engages in or does not engage in during the day can affect their sleeping. Allowing your child to burn some energy by running around, crawling, carrying their book bag, opening doors, playing with stress balls or play-doh can all support sleep. These activities are called “heavy work”. They allow the child to get the sensory input that they may be seeking as well as help them burn some extra energy. So allow your child to do another lap around the couch. More physical activity during the day leads to a sleepy child at night.
Another factor that may help your child go to sleep is limiting the amount of caffeine your child has during the day. While we may need it to get through the day, our little ones have enough energy stored away that they don’t need the extra boost. Caffeine doesn’t always mean pop/soda or coffee. Caffeine is also found in energy drinks, green teas, black teas, chocolate, and occasionally cereals, granola bars, Cliff bars, and puddings. So take another look at the food labels to see if caffeine is hiding in their favorite snacks.
Oh the bedtime routine. Depending on how busy your household is and how many hands you have to help out, this time of day could be one you dread. By structuring your child’s bedtime routine and doing things in the same order every night you can ease some of this nighttime stress. Now we all know that things come up and sticking to a routine can be challenging but let’s shoot for 85% of the time having the routine stays the same. Children love structure and a nighttime routine will help give that to them! By helping children learn structure at a young age, you are helping them to build skills that will benefit them in the future.
So how do you start a bedtime routine? Well it should start 30 minutes before expected bedtime and should include, but not be limited to, bathing, dressing, story time, using the restroom or a diaper change. In order to help build the structure, maintain the order of each activity so that the child can anticipate what comes next. While this part may be challenging, depending on your child’s sensory preferences, limit the amount of activities that might provoke challenging behaviors. If taking a bath is what causes the rollercoaster of emotions, try to limit the time spent in the bathtub or have a countdown that will help the child know when this activity is almost over. Try to make challenging activities fun by including something the child likes within the activity and rewarding them when the activity is completed. Maybe their favorite toy needs a bath every night too!
Warning, hot topic. Research has shown that the more screen time a child has close to bedtime the greater the number of sleep problems they have and the fewer hours of sleep they will get (Richdale & Schreck, 2019). I am not sure about everyone else but one of my guilty pleasures is watching a good relaxing TV show or scrolling through my phone prior to bedtime. So telling your child not to do something that you do yourself may hold a little bit of a double standard BUT thinking of the benefits may ease your mind. Plus, I could always benefit from less screen time myself. This routine may be hard to break, especially if this is something they are used to but, considering decreasing the amount of screen time prior to bedtime may help with increased duration of sleep. If you already know this won’t go over well, try moving up their screen time to earlier in the day so that nighttime is left for toys and family time or try replacing their Ipad with reading a book as a family. This may not be the answer to everyone’s problem so don’t be discouraged if this doesn’t sound like it’s right for your family.
For children with Autism, structure helps them understand what is expected of them and allows them to process each step. Like a checklist for adults, we are able to look at this list and understand what all needs done and then get the satisfying feeling of checking it off when it is completed. Not only is this a satisfying approach for adults but it can be beneficial for children too. Having a schedule/ checklist of activities in the order that they would be presented helps the child understand what activity is expected first and what is expected in the future. This allows them to prepare themselves for the transition. So create a checklist for your little one’s nighttime routine. Okay, so not a checklist with lots of words but a one word, a photograph, or object that represents each task that your child would understand. You can then place these words, photographs, or objects on a velcro strip or book ring. As each task is complete the child is able to either remove it from the velcro strip or turn it on the book ring. While making the schedule/checklist think of the order you want these activities to be placed in. Activities that will be more stimulating such as brushing their teeth or eating a nighttime snack, should be first followed by more relaxing activities such as story time or a warm bath. This may be different for each child due to their sensory preferences. One child may love a relaxing bath while the other screams even at the word ‘bath’. An important part of the schedule/ checklist, is that the activities are placed in the same order every night. This will help the child to anticipate the next activity prior to looking at the visuals and provide more structure within their routine.
In order for the visual to be successful, it needs to be consistent. While using visuals may seem like an extra step in the beginning, using them consistently will increase the likelihood that the child will start to participate in using them. This process may take a couple weeks or even a month but it is well worth the wait!
Make it fun! Increase your excitement when moving from one activity to the other and praise your child when they help you flip the activity card! While making the activity cards, incorporate your child’s favorite character, toy, or theme. An example would be using a photograph of their favorite truck holding the shampoo bottle that you use to wash your child’s hair. This will help gain their attention to the cards and make it personal to them. Get your child involved! Again, in the beginning it may seem like just another step that you have to add to this already busy time but with repetition it will get easier. Help your child flip the cards on the book ring, or if you use the velcro strip, help them remove the activity card from the velcro strip when that task is over. This helps the child understand that they are done with that activity and gets them involved in their nighttime routine.
Creating the visuals (schedule/ checklist):
Things you may need:
Velcro strip or Book ring
Photographs of objects that the child would recognize that represent the activities
Paper
Words that the child recognizes that represents the activities
Objects that the child recognizes that represents the activities
Assistive technology(Gee et al., 2021) (Roberts et al., 2019)
So maybe you started a routine and started to cut back on screen time before bed but you just want to try something else. Something that doesn’t involve lots of steps. Here is the section for you! These tools listed below are called ‘assistive technology’. Don’t worry, that big word is defined as tools used to assist individuals in order to increase their functional capabilities and move towards being independent. So basically just some cool things to help the sleeping process. Some of you may have heard about these tools and never thought to call them “tools” or “assistive technology”. Don’t worry, a lot of people don’t call them that either.
First one up, weighted blankets! Nothing like laying down after a long day and snuggling up in a weighted blanket. The pressure helps relax the body and gives a feeling of a hug. Children can feel comforted by this feeling while others find it repulsive. This goes back to their sensory preferences. Some things to know if you are trying to use a weighted blanket include making sure that the child is able to take it off themselves! This means the blanket is not too heavy to the point where the child needs help to remove it. This is a big safety issue! They should not put the blanket over their head and to ensure that the child is using it safely, supervision should be in place the whole time it is in use. While they can be useful, ensuring the child is safe is your number one priority.
Sound machines, these can be beneficial if the child enjoys calming background music. It should be soft and gentle. If you use this, try to incorporate turning it on into your nighttime routine. This can help set the mood for sleep and be an indicator that it’s time for bed. Different sound machines play different themes such as the rainforest, brown noise, white noise, or even nature sounds. Like other strategies, this is based on what your child prefers. On occasion, a child may not enjoy added music because too much is going on already and this added noise only makes their senses go into overdrive. It may even cause the opposite of what you want it to do, more emotions and avoiding behaviors. So test it out but don’t be discouraged if it’s not for them.
Schedules and timers, like we discussed above, schedules are a great tool to use to help your child with their transitioning from one activity to another. If your child is not understanding your words such as “bath time” or “change your clothes”, it can be upsetting not only for them but for you too. Those words may mean nothing to them but seeing the bathtub lets them know what you mean. Occasionally young children relate to visuals easier than words. By showing them a picture of an object that connects to the activity, they may be able to correlate the connection and have a better understanding of what you are asking of them.
Timers are a great addition to schedules for some children. If an activity is not a favorable one, adding a timer so that the child can understand how long they have to participate is beneficial. On the other hand, timers may cause children to be anxious and worried about a time constraint. You can always try it out and if it doesn’t add anything beneficial then take it out of the equation.
Last but not least, a bedtime pass! This could be a game changer! A bedtime pass could be a piece of paper, object, or even a picture that a child can use each night as a token to get out of bed. They can only use it once for one of the options below:
1 visit from a parent
1 drink of water
1 night time hug
1 night time kiss
Something your child always asks for
This is not to say that you don’t hug your child before bed or give them a drink of water. This pass means that after your bedtime routine is up and you go to leave the room they have one opportunity to get up. They would exchange the pass for one of the listed things and then head back to bed. Once the pass is used then they have to wait until morning to get it again. This is beneficial for children who repeatedly get out of bed in order to avoid going to sleep. The bedtime pass would limit the amount of times they can get out of bed. The pass may take a while to understand so give it some time to stick. If your child does not use the pass during the night, they can then exchange it in the morning for a reward. This reward could be whatever is rewarding to them; praise, a cookie after lunch, a toy, play a game with a parent, etc. Obviously if your child has to use the restroom or has an emergency, that overrides the pass. The downside is that not every child will understand this concept so you may have to wait until they are older before using this tool.
Throughout this blog I have mentioned rewards and praising your child a couple of times. Rewards and praise are considered reinforcers and can be a good way to acknowledge that your child has done a favorable behavior. Reinforcements are beneficial because it shows the child that you noticed their efforts and they did a good job. This is just another tool you can use not only for their sleeping routine but throughout the day with other challenging activities. A reward can be as small as a favorite snack or as big as a toy at the store. Normally the reward is equivalent to the activity the child has done. If they listened and put a toy away then maybe a favorite snack is a good reward but if they used the toilet after three years of trying to get them to even acknowledge there is a toilet then maybe a shopping trip is in the future.
Final Thoughts
As parents, it can be hard to see your child struggle and be unsure on how to help them. It is especially challenging when they struggle with sleep. Strategies that are listed above are not all inclusive and if attempted should be modified to meet your child’s specific sensory preferences. It is also recommended that parents or guardians seek out further medical consultation in order to investigate other health related matters that may contribute to sleeping complications and that may require additional interventions (i.e. medication management, additional diagnoses). The creation of this blog was to provide strategies for parents whose children diagnosed with autism struggle with sleep. Please feel free to leave comments on what worked for you and what did not. Building a community of parents in the same boat can help provide additional support for new parents.
Information provided within this pamphlet is based on current research and additional evidence-based resources. Scan the QR code for references.
Being a caregiver is definitely not for the weak. We are often the only constant in a care recipient…
Being a caregiver is definitely not for the weak. We are often the only constant in a care recipients’ life. We develop bonds and become family with those we provide services to.
I always knew I wanted to do something in this line of work. In 2013 I started working with individuals with disabilities and knew that this was my calling. Creating that bond with my clients is just as special to me as it was for them. They were no longer just clients but became my family. When I joined Easterseals in March of 2020, I started to develop strong bonds with those we provide services to, and like before they have become family to me.
Being a caregiver is more than just caring for others. You need to take care of yourself as well. Allow yourself time to relax. Often, we find ourselves wanting to be there for our consumers and giving them all of our attention, but we need to remember that we are not only caregivers to them, but also caregivers to ourselves. Give yourself an outlet, choose a hobby, read a book, take a walk, or have a nice relaxing bath.
Allowing yourself to focus on yourself will give you the strength to continue being that amazing caregiver that you are. Here are some additional things that I have learned that have helped me prioritize my own needs.
Realize it is okay to take a break
Understand it is completely acceptable and encouraged to ask for help
Engage in activities that help keep you centered and help keep you healthy
A simple walk outside for 5-10 minutes can help you recharge
Listen to your own emotions and learn from them
Get proper rest and nutrition
Know that you are not alone
If we aren’t willing to be caregivers to ourselves, then how are we supposed to be caregivers to others. One outlet I have is crafting. Crafting is my hobby, and I often find myself more relaxed during and after I finish a craft.
Choose what relaxes you and apply it to your day-to-day.
My Clinical Rotation with Easterseals as a Physical Therapy Student
Friday, October 29, 2021, 2:10 PM
As we are coming to the end of Physical Therapy month, I am thrilled to get the chance to share my e…
As we are coming to the end of Physical Therapy month, I am thrilled to get the chance to share my experience with Easterseals! My name is Janelle Brubaker and I am a 3rd year Doctor of Physical Therapy student at Western Michigan University. I am currently in the middle of my third full-time clinical rotation here in Columbus, OH, and ecstatic to be back in my home state for a while. I spend half of my week in the Early Intervention domain here at Easterseals and the other half of the week in the school-based PT domain at some of the local elementary and high schools.
Physical Therapy in the early intervention setting is targeted towards children who are between the ages of 1-3 years old who have a developmental delay or disability. We evaluate the gross motor skills and functional development of the children and then work with those who require our services to meet their milestones and keep up with their peers.
Some examples of the milestones that we look at to be observed by the age of 3 years are:
Ability to walk and run independently
Throw a ball forward, climb up and down stairs with an alternating stepping pattern
Squat down to the ground to pick up a toy without losing their balance
At Easterseals we work directly with the students on a regular basis but also spend time meeting with guardians, teachers, and caretakers to educate and coach them on how they can best assist and nurture their child’s physical development.
I am very thankful for the amazing opportunity to learn so much here at Easterseals from Tracy Jungwirth, DPT, my clinical instructor, the early intervention specialists, occupational therapist, speech-language pathologist, and other staff here. It has been such a unique and rewarding experience working with the incredible kiddos here. I will carry the memories and lessons they have taught me into my future career as a PT.
My Journey as a Physical Therapist with Easterseals
Monday, October 18, 2021, 11:22 AM
My name is Tracy Jungwirth and I am the physical therapist for Easterseals and their Early Intervent…
My name is Tracy Jungwirth and I am the physical therapist for Easterseals and their Early Intervention program. I started with Easterseals as a new graduate, fresh out of physical therapy school in 2014. I learned SO much from the great team of teachers and therapists at Easterseals in the first year and even more from the kids themselves. The children in the early intervention program taught me early on to never underestimate them and to celebrate every inch stone and milestone.
In 2015, my husband and I moved to Seattle, Washington for his medical residency. I also worked in early intervention in Washington and continued to grow as a therapist and learn from so many talented and experienced physical therapists, occupational therapists, speech language pathologists, and teachers. We missed Columbus so much and were thrilled to return to the Buckeye state in 2018 and I returned to Easterseals in 2019.
I am lucky enough to say that I truly love my job and having the opportunity to work with the kids in the early intervention program. As a physical therapist, I work with children to help them meet their potential and work with families to help their children meet their goals. I work with children to help them get stronger and meet milestones such as sitting, crawling, walking, and jumping. Just since the start of the school year I have seen such amazing growth in our children. I set one child up with a walker the first week of school, and she has taken off so quickly. It is a joy to watch her explore the classroom and playground with her peers for the first time! I have another child who is turning 3 soon who is making so much progress, and her mom said this week that she truly believes her daughter is doing so well because they started therapy and early intervention at a young age.
My days vary so much working with toddlers but in a typical day I help kids get off the bus, working on walking down the stairs, or help them walk from their parents’ car to the classroom. In the classroom, we start our day by washing hands and many children are working on stepping up and down the step stool to wash their hands. I will work with kids while they are playing, possibly working on sitting balance, or setting up an obstacle course in the classroom to challenge their balance. All the classes will go either outside to our wonderful playground or inside to our gross motor space. I will work with children on their goals such as walking up and down stairs or riding a tricycle while they are playing. Being a physical therapist working with children, part of the fun and the challenge is making the activities fun and exciting for the child, so they don’t even realize they are working on something hard. Unlike working with adults, you can’t just show them an exercise and have them do 10 reps of it! So, we play lots of fun games and set up different activities to keep therapy fun and engaging!
I absolutely love working with the ages of birth to three-year-old population and seeing how much they grow and change in those first 3 years. It is so much fun to see kids who start in our program when they are 1 and see them start walking and talking and learning about their world through our program. It is always hard to say goodbye when the children turn 3 and transition out of our program but it is a joy to reflect with parents about how far they have come in their own journey with Easterseals!
“One of the best investments we can make in a child’s life is high quality early educati…
“One of the best investments we can make in a child’s life is high quality early education”
Barack Obama
Transitioning and change can be difficult for anyone, at any age. During a pandemic, this can present extra challenges especially for young children as they transfer back to their early childhood programs or school. There are things that parents, caregivers and teachers can do to make the transition successful for everyone involved.
New faces and routines can leave children wary. Children have a natural instinct to want to be closest to their familiar and trusted caregivers. Until a child is old enough to understand their emotions and talk clearly about their feelings, it can be difficult for an adult to explain that the new people their child is being introduced to – is a trusted source and there to care for them. If the child has developmental delays, they will need extra time to adjust. It is easier for young children to make the transition if they have spent time with their parents/caregiver and the new person (or people), together. While it’s natural for the parent/caregiver to worry about their child making a successful transition, always remember to keep calm and be reassuring so that your child mimics your behavior.
What can parents and caregivers do to make the transition easier? Here are some tips from the CDC.gov website:
Parents can:
Ask your child’s school if they have any online support groups, such as a private Facebook group so that you can connect with other parents who have children in the same program.
Talk about school with your child. Show them pictures of the school, classroom, and teachers if available. (our staff will gladly provide these to families upon request).
Talk with teachers about the best way to separate from their child at the start of the day—brief goodbyes are often best.
Try to stay calm and reassuring during transition—using a calm voice, with a relaxed face and body language to let their child know that they wouldn’t leave them if the child were not safe and protected.
Remember that this is a phase—building new relationships is an important skill, and with support, children can be resilient. Even if it’s hard to separate, they will gain a new trusted relationship with their new teacher and peers so they feel more secure.
The skilled staff at Easterseals know how to help children adjust to the changes and fears they might be experiencing. From the moment a child enters our Early Intervention program, our goal is to provide them with the support and skill development needed to make positive impacts on their lives and their families. Their social and emotional learning is essential part of every child’s education. We focus on the child’s emotional and physical needs early on in their development at their individual level of ability, giving them the head start they need to keep up with their peers. We recognize that a focus on emotional wellbeing is critical to each child’s ability to engage and learn.
Our children and their social and emotional needs are in the forefront of our minds as we prepare to welcome students back to our campus.