Success Stories: Positive Outcomes
Sleep Help Institute: Helping Children Diagnosed With Autism Spectrum Disorder (ASD)
ASD affects individuals to different extents. Individuals with ASD can be highly gifted or mentally challenged, but all have some challenges with socializing and communicating with others. Developmental issues associated with ASD are typically diagnosed in early childhood, but can be noticed as early as 18 months. Between 44 to 83 percent of children with autism spectrum disorder also experience sleep issues. Most commonly, children with autism have difficulty falling asleep and experience disturbed sleep once they do.
We believe that parents of autistic kids - or anyone on the spectrum - will find helpful the resources given by the Sleep Help Institute.
Sleep Help for Those Diagnosed With ASD
Sleep Help Institute
The Sleep Help Institute Blog
Autism spectrum disorder (ASD) is a catch-all for autism, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. ASD affects about 2 million individuals in the United States, and is 4.5 times more common in boys than in girls.
ASD affects individuals to different extents. Individuals with ASD can be highly gifted or mentally challenged, but all have some challenges with socializing and communicating with others. Developmental issues associated with ASD are typically diagnosed in early childhood, but can be noticed as early as 18 months.
Between 44 to 83 percent of children with autism spectrum disorder also experience sleep issues. Most commonly, children with autism have difficulty falling asleep and experience disturbed sleep once they do. Problematically, their sleep problems tend to exacerbate other issues characteristic of the disorder. For instance, daytime sleepiness from lack of sleep often results in hyperactivity, inattentiveness, and aggression during the day.
Common sleep disorders affecting children and adults with autism
In general, children with autism tend to sleep 32.8 minutes less per night and take almost 11 minutes longer to sleep than their typically developing peers. Children with ASD also have a higher prevalence of sleep issues than their typically developing peers. One study reported the following instances of sleep issues in autistic children:
54% displayed resistance to bedtime
56% experienced insomnia
53% suffered from parasomnias, such as sleepwalking or night terrors
25% experienced sleep disordered breathing, including sleep apnea
45% had difficulty waking up in the morning
31% experienced daytime sleepiness
Common sleep issues for people with autism include:
Sleep-onset insomnia describes difficulty falling asleep. Children with autism are two to three times more likely to have insomnia than their typically developing peers. Children with ASD are also more likely to have anxiety or depression, which are co-morbid conditions of insomnia.
Sleep apnea is a form of sleep-disordered breathing where the individual literally stops breathing during sleep for up to a few seconds. Obstructive sleep apnea (OSA) is caused by blocked airways that decrease oxygen levels in the blood. Individuals with OSA experience less restful sleep because the apnea episodes rouse them.
Sleepwalking, like autism, is more common in boys than in girls. Sleepwalking episodes typically occur during deep sleep in the first half of the night.
Children who sleepwalk are also more likely to experience nightmares or night terrors, sudden rousing during the first half of the night accompanied by sweating, rapid heart rate, fear, and confusion.
Rhythmic movement disorder describes rhythmic head or body rocking episodes of 15 minutes or less that occur while the person is falling asleep or just after they fall asleep.
Restless leg syndrome (RLS) describes an uncontrollable urge to move the lower limbs in order to relieve a tingling sensation while falling asleep. RLS is more common in women than in men.
Bedwetting (nocturnal enuresis), while common enough during early childhood, is even more common in children with ASD than their typically developing cheers.
Hypersomnia is the opposite of insomnia, and describes excessive sleep of 10 hours or more that isn’t refreshing and leaves the individual tired during the day.
In addition to the sleep disorders above, children with ASD are also more likely to have epilepsy or gastrointestinal problems, both of which can further disrupt sleep.
Unfortunately, when autistic children have sleep issues, they also tend to be more intense than typically developing children. Worse, short sleep duration is highly correlated with social impairment, especially the ability to develop peer relationships, according to recent research. Sleep-deprived children with ASD see decreased IQ scores, and tend to engage in repetitive behaviors and compulsive rituals more often. They also have higher rates of behavioral issues, depressed or anxious mood, and problem paying attention in school.
Why are children with autism more prone to sleep problems?
While scientists still don’t know why children with autism are more prone to sleep issues, they have advanced a few theories.
Abnormal melatonin production
One theory is that children with autism have brain abnormalities that affect their ability to regulate sleep. Children with autism tend to have abnormal levels of tryptophan, which is an amino acid involved in melatonin production. Melatonin is the hormone responsible for regulating sleep. Autistic children don’t produce melatonin at the same time other people do, so their levels are higher during the day and lower at night – which is the reverse of when it should be.
Difficulty reading social cues
Autistic children have difficulty reading social cues. As a result, they may not correctly interpret the actions of their siblings, parents or other family members getting ready for bed. Besides our circadian rhythms, social cues also help us recognize when it’s time for sleep, especially in early development.
Because children with autism have heightened sensitivity, it can be more challenging for their brain to calm down enough to fall asleep. Plus, they are more prone to be roused by external stimuli during the night, such as a snoring family member or a parent opening a door elsewhere in the house.
During infancy and as toddlers, typically developing children sleep throughout the day and wake up to feed. As they age, children continue taking naps but sleep less during the day and sleep more during night, until they eventually sleep primarily at night. Young children with autism may not develop mature sleep patterns at the same rate of their peers, which can cause them to wake more frequently during the night and to be more tired during the day.
Children with autism may experience spend 8 to 10 percent less time in REM sleep, which is the critically restorative stage of sleep where dreaming occurs and the brain processes memories and learnings from the day. The reduced REM sleep can negatively impact autistic children’s cognitive performance in school and stymie their development.
Researchers hypothesize neurotransmitter abnormalities in the brain may responsible for the reduced REM sleep. They are also currently researching whether a single genetic mutation could cause both insomnia and autism.
How do sleep issues change as my autistic child ages?
Fortunately, many sleep problems affecting autistic children naturally go away with childhood, including night terrors, sleepwalking, and rhythmic movement disorder (RMD).
Night terrors are more common in children during the ages of 3 to 7. Unfortunately, there is no treatment for these, but reassuring your child before bed and whenever they wake up may help calm them.
Children also outgrow sleepwalking, although a 2012 Stanford study estimates 3.6 percent of adults have slept walk within the past year. While you wait for your child to outgrow it, protect against them getting hurt by picking up the floor, clearing clutter, and locking doors and windows.
Most cases of RMD go away naturally by age 5. If you notice your child rocking, do not wake them up as it will cause them to just restart the process when they go back to sleep (unless, of course, your child is about to hurt themselves by falling off the bed). Until then, invest in padded bed rails and floor pads to protect your child from injury.
Adults with ASD have significantly fewer sleep problems than children with ASD, but they still experience them at twice the rate of the general population. About 20 percent of adults with ASD have a diagnosed sleep disorder such as sleep apnea, and insomnia can continue into adulthood for autistic individuals. Adults with ASD also have higher rates of psychiatric disorders and other medical conditions, many of which can contribute to or exacerbate sleep issues themselves.
How can I help my autistic child sleep better?
Autistic children who get a better night’s sleep tend to have fewer behavioral problems and better social interactions, according to a 2006 study published in the journal Sleep. If your child has difficulty sleeping, wakes frequently during the night, or wakes up early, they may have a sleep issue. Monitor your child during the night and note anything unusual such as snoring, movements, or breathing problems. You can share this information with your pediatrician or a sleep specialist.
Note that children need more sleep than adults. Here’s an overview of the recommended amount of sleep by age:
Toddlers: 14 hours
Preschoolers: 12 hours
Elementary and middle schoolers: 10 hours
Adolescents: 9 hours
Adults: 7 to 8 hours
Helping your child sleep better will also help you as their caregiver. Caregivers and parents of children with ASD tend to have more sleep problems than the average adult, whether due to the emotional stress of raising an autistic child or interruptions during the night from their child. Further, parents of autistic children sleep less overall, have worse sleep quality, and wake up earlier than other parents.
Many behavioral changes can completely resolve or at least alleviate sleep issues for children with autism. The following tips have been helpful for parents:
1. Keep the bedroom cool, dark, and quiet.
Children with ASD have heightened sensitivity and can be more sensitive to their environment than other children, so you may want to invest in blackout curtains and remove any stimulating electronics. Limit television time in the hours before bed as it can overstimulate their already sensitive brains. Instead, focus your child’s attention to quiet activities like drawing, puzzles, or reading.
2. Practice good sleep hygiene and establish a bedtime routine.
Bedtime routines can help children fall asleep faster, according to research by Vanderbilt University. Repeat the same activities in the same order each night 30 minutes before bedtime, including when your child brushes their teeth and if you read a bedtime story together. Have your child go to sleep and wake up at the same time, regardless of whether it’s a weekday or weekend.
Children with autism can show a strong favoritism towards objects. Lean into this by using the same pajamas and objects in the bedtime routine. Find a way to include multiple objects (such as two stuffed animals) so your child can still sleep if one item becomes unavailable.
Prepare your child for bedtime by reminding them that it’s coming up, so they don’t get irritated by a sudden transition. Use something consistent, whether it’s a verbal reminder, or a clock that signals the time.
Because autistic children are highly sensitive, you might consider using relaxation techniques in the bedroom routine, such as a gentle massage or lavender oils during bath time.
3. Adjust your child’s diet and exercise.
Watch your child’s diet and take care to remove any foods that they have sensitivity to as an upset stomach can disturb sleep. Children with autism are more likely to have gastrointestinal problems and food allergies or sensitivities, which if ignored, can cause disrupted sleep.
Limit liquid intake before bed to prevent bedwetting. Avoid caffeine (remember that tea, coffee, chocolate, and soda can all be sources of caffeine).
Provide regular exercise earlier in the day so your child can fall asleep better at night.
4. Coach your child to fall asleep without you in the room.
Children with autism can have an even harder time falling asleep without their parents than their typically developing peers. Slowly coach your child to fall asleep without you in the room. In the event they wake up during the night, this will also help them fall back asleep on their own.
First, you can also establish a sense of normalcy around falling asleep alone by showing your child a picture of them asleep in their room while you are doing another activity, or limiting any sleep or nap time to take place solely in their bedroom. Then, go through each of these steps until your child falls asleep, doing one step for a few nights at a time before moving on to the next one:
Lie next to your child in bed
Lie near the bed
Sit on a chair inside the bedroom with the door open
Sit outside the bedroom but remain visible to your child
Sit outside but out of sight, with the door open
Sit outside with the door closed
Go to your room and sleep
There are many sleep products designed to help individuals with sensory and developmental disabilities fall asleep better.
Waterproof mattresses and bedding
Autistic children who regularly wet the bed may benefit from waterproof mattresses and bedding. These are made from polyurethane and other materials that are easy to clean and do not develop an odor or stain from repeated incontinence.
Bed rails and floor pads
Bed rails prevent falls from individuals who move a lot during sleep from rhythmic movement disorder, night terrors, or epilepsy. Bed rail pads provide a comfortable surface should your child come into contact with the rails during sleep, and floor pads around the sides of the bed can provide further protection against a fall.
White noise machine
A white noise machine or smartphone app can help calm children to sleep using soothing music, white noises, and nature sounds. It also helps drown out other noise in the house they may be sensitive to.
Autistic children who snore may find relief from anti-snoring mouthpieces. These are fitted by a dentist to move the lower jaw forward and free up airways during sleep. Less extreme options include anti-snoring nasal plugs or pillows. Alternately, more extreme options for cases of sleep apnea include continuous positive air pressure (CPAP) machines, which fit an oxygen mask over the face during sleep.
Weighted blankets soothe the uncomfortable sensations from restless leg syndrome. Choose a blanket that weighs 10 percent of your child’s body weight plus 1 pound. Even an autistic child without RLS may prefer a sleeping bag in their bed, finding comfort in the warm, cocoon-like feeling.
Some individuals may have RLS due to an iron deficiency, in which case taking an iron supplement can relieve symptoms.
If your child suffers from hypersomnia or excessive daytime sleepiness, using light therapy boxes in the morning may help them adjust better to being awake during the day.
Melatonin has been shown to help children with ASD fall asleep 28 minutes faster, and sleep longer for 21 minutes. Ask your doctor about giving your child a melatonin supplement. Low doses of 1 to 3 mgs 30 minutes before bedtime can be effective.
Additional autism and ASD resources
Autism Speaks funds research, builds community awareness through events, and provides resources for parents, caregivers, and adults with autism. Their Autism Response Team is available at 888-288-4762, and a local resource directory is available on the website.
The National Autism Society is a U.K.-based organization that provides resources for caregivers, parents, and health professionals who support people with Autism and Asperger’s syndrome. It offers an Autism helpline and multiple online forums.
The Interactive Autism Network funds and publishes research findings related to understanding and treating autism spectrum disorder.
Deal With Autism publishes AutisMag, the leading autism magazine with 22,000 subscribers, and offers online diagnostic tests for varying age groups, a community forum, and other resources on its website.
The CDC provides demographic data and statistics on autism from their latest research, and reviews diagnosis and treatment options for families and health professionals.
The Autism Research Institute funds research, shares the results on their website, and provides educational and coaching resources for health professionals and caregivers of those with ASD.
The Art of Autism is a collaborative non profit who promotes awareness by showcasing the artistic abilities of individuals with ASD. Individuals can submit all kinds of art, including blog posts, poetry, videos, visual art, and movie and book reviews.
Wrong Planet connects parents and adults with Autism, Asperger’s Syndrome, and ADHD neurological disorders to lean on each other for support. The autism forum alone has over 1.3 million posts.
The Autism subreddit has over 18,000 members.
ASPIESCentral is a forum for individuals with autism and Asperger’s syndrome. Individuals can also create their own blog.
The #autism hashtag is highly active on Twitter.
There are many blogs dedicated to Austin, if these lists by Healthline, The Art of Autism, Feedspot, and Autism Speaks give any indication. Some that earned a spot on multiple lists include:
The Autism Dad is told from the point of view of a father with three autistic sons.
A diary of a Mom is told from the point of view of a mother with an adolescent daughter with ASD.
The Autism Daddy shares his experience raising a nonverbal autistic son.
Autistic Hoya is the blog of Lydia X.Z. Brown, an autistic and queer writer, speaker, and activist.
Rhema’s Hope documents the journey of Rhema, a previously nonverbal autistic girl who also has a seizure disorder. Rhema’s mom blogs and shares conversations from Rhema herself.
The Invisible Strings is written by autistic adult M. Kelter, who shares stories about how the disorder has shaped his life and experiences.
Squidalicious is managed by a woman with an autistic teenage son. Her blog promises geekery, parenting, and autism.
Four Plus an Angel is a mother of four, the eldest of which is autistic. Her experience is also informed from her previous work at an autism center.
The following books cover sleep issues for children and adults with ASD. All are available in print or Kindle editions on Amazon. For more books on ASD, take a look at the extensive resource list on Autism Speaks as well as the Best Sellers list on Amazon for Autism & Asperger’s Syndrome.
Autistic Logistics by Kate Wilde covers a variety of behaviors parents of children with autism often face, such as bedtime hyperactivity, tantrums, and bedwetting, and offers helpful solutions.
Solving Sleep Problems in Children with Autism Spectrum Disorders: A Guide for Frazzled Families by Terry Katz and Beth Ann Malow is based off of the researchers’ multi-year study of sleep in children with ASD. The authors promote behavioral changes and parental coaching to resolve their child’s sleep problems, rather than medication.
Sleep Better! A Guide to Improving sleep for Children with Special Needs by V. Mark Durand reads like a textbook, with research-backed exercises, strategies and behaviors for parents to use to help their children sleep better. The book also includes practical materials like a sleep diary and behavior log.
Sleep Well on the Autism Spectrum by Kenneth Aitken first reviews the underlying factors that often cause the sleep problems associated with ASD, and then provides an overview of helpful tips, behaviors, and other treatment options.