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Sleep is a major issue for many adults and children who have been diagnosed with autism spectrum disorder (ASD). Recent studies suggest that up to 80% of young people with ASD also have difficulty falling and/or staying asleep at night. The incidence rate of sleep problems and disorders is also high among adults with ASD, particularly those who are classified as ‘low-functioning’. Lack of sleep can exacerbate some of the behavioral characteristics of ASD, such as hyperactivity, aggression, and lack of concentration. As a result, people with ASD who have a hard time sleeping may struggle at work or in their classroom.
We’ll look at some of the most common sleep issues among adults and children with ASD, as well as some suitable treatment options and tips for managing ASD and sleep on a regular basis. First, let’s look at how the medical and psychiatric communities currently define ASD.
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is considered the most authoritative guide for evaluating and diagnosing mental health disorders in the United States. According to the latest definition (last revised in 2013), the diagnostic criteria for autism spectrum disorder (ASD) are as follows:
The latest DSM revisions also note three distinct ‘severity levels’ that can be used to assess how much support (if any) a person with ASD requires on a regular basis.
|Severity Level||Social Communication||Restricted Interests and Repetitive Behaviors|
|Level 3: Requiring Very Substantial Support||‘Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others’.||‘Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly’.|
|Level 2: Requiring Substantial Support||‘Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others’.||‘[Rituals and repetitive behaviors] and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest’.|
|Level 1: Requiring Support||‘Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions’.||‘Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest’.|
Prior to 2013, ASD was broken down into different autism subtypes based on severity of symptoms. These subtypes were eliminated and omitted from the DSM-5, and their diagnoses have all been absorbed into the ‘ASD’ definition. Although these subtypes are no longer officially diagnosed, they are still widely discussed within the medical and psychiatric communities. Additionally, some are still included on other authoritative lists, such as the International Statistical Classification of Diseases and Related Health Problems (ICD) database maintained by the World Health Organization (WHO). The four most common subdivisions of ASD (as previously defined by the DSM) are:
In addition, some disorders once considered part of the autism spectrum were removed from the ASD diagnostic criteria prior to the DSM-5 revision in 2013. Rett syndrome, for instance, can cause symptoms in children that are similar to those associate with autism; however, Rett syndrome is caused by a genetic mutation, and also carries symptoms not found in other ASD disorders. Social communication disorder is another example; people with SCD often struggle with everyday communication, but the disorder is distinguished from ASD due to a lack of repetitive behavior patterns.
The root cause of ASD remains unknown, though most researchers today believe that both genetic and environmental factors play a major role. Recent studies have pinpointed some genes that are prevalent in people with the disorder, and brain-imaging tests indicate that the brains of people with ASD develop differently than the brains of other individuals. The general consensus is that ASD originates from defects in the brain that affect how the brain grows and communicates with other areas of the body. Studies have yet to identify any specific environmental factors that directly cause or influence the development of ASD. However, the scientific community has debunked and rejected the longstanding belief among parents that child vaccinations lead to a higher incidence rate of ASD in developing children.
Most children with ASD begin to display symptoms by age three, so early detection and evaluation is critical. The ASD diagnosis process for children is divided into two stages: developmental screening and comprehensive diagnostic evaluation.
Parents are urged to begin developmental screening at a young age to evaluate their children for ASD and other intellectual disabilities. The Centers for Disease Control (CDC) recommends ASD screenings for all children at the ages of nine, 18, and 24-30 months, adding that a reliable ASD diagnosis can usually be made by age two. Additional testing may be required for children who are considered high-risk for ASD, including those with family members who have already been diagnosed or those who have displayed ASD-related behaviors.
During the developmental screening stage, doctors watch for signs and symptoms of ASD diagnostic criteria. These include deficits in communication and social interaction, restricted interests, and repetitive behaviors. Speech and language skills are often delayed in children with ASD; they typically will not respond to their own name after 12 months. Other ‘red flags’ include refusal to acknowledge or point at moving objects after 14 months, showing little interest in playing ‘pretend’ games after 18 months, and sustained repetition of words and phrases, as well as physical signs like avoiding eye contact, constantly rocking back and forth, compulsory hand waving, and/or exhibiting ‘unusual’ reactions to sensory stimuli. Additionally, children with ASD often display at least one of the following traits or behaviors:
According to the CDC, the most commonly used developmental screening tools include the following:
If developmental screening yields results that are consistent with ASD symptoms, then a comprehensive diagnostic evaluation may be recommended. Family participation during this second phase is vital. Parents can describe symptoms and behaviors to the evaluation provider, who can then take these statements into account when conducting the diagnosis. The presence of at least one parent can ease the evaluation process for the child, as well.
In order to perform an accurate evaluation of ASD in children, doctors rely on a set of diagnostic tools. The CDC notes that a comprehensive ASD evaluation should include at least two diagnostic tools; the following four diagnostic tools are most widely used:
Once the comprehensive diagnostic evaluation is complete, parents can discuss the outcome with their physician and — if the child receives an ASD diagnosis — explore possible treatment options.
ASD is a lifelong condition. People with ASD typically begin to show symptoms of the disorder during their early childhood. In some cases, however, these symptoms will not become apparent until the individual has reached adulthood.
Due to the wide range of symptoms and severity levels, diagnosing ASD in adults can be a tricky process — particularly for those who have not received an ASD diagnosis as children. According to neurologist David Beversdorf of the Autism Speaks Autism Treatment Network, an adult seeking an ASD evaluation should first discuss the matter with his or her physician. During this consultation, the patient should explain why they are seeking an ASD diagnosis. These reasons may include changes in the way he or she behaves or interacts with others, as well as heightened sensitivity to sensory factors, acquired repetitive behaviors, or newly restricted interests.
Most licensed physicians are not trained to diagnose ASD themselves, but they will be able to steer the patient in the right direction — and, in some cases, refer them to a specialist with a background in ASD diagnosis. Due to a widespread scarcity of clinicians that specialize in ASD, Dr. Beversdorf suggests meeting with a medical professional that evaluates and treats young people for the disorders. These include developmental pediatricians, child psychiatrists, and pediatric neurologists.
One major issue for diagnosing adults with ASD has been a lack of reputable screening and diagnostic evaluation tools. With the exception of the Gilliam Autism Rating Scale — which evaluates subjects up to 22 years of age — these tools are designed for child subjects, not adults, who tend to be less honest and more secretive when undergoing these tests. Deceased parents are another obstacle for diagnosing adults, since mothers and fathers provide key information to clinicians during the early screening and evaluation stages of child ASD testing.
The Adult Repetitive Behaviours Questionnaire-2 (RBQ-2A) appears to be a step in the right direction. Introduced by the Journal of Autism and Developmental Disorders in 2015, the ADBQ-2A is designed to evaluate adults based on repetitive behaviors and restricted interests. Because the questionnaire excludes social communication and interaction, it should not be seen as a definitive evaluation tool for ASD in adults. However, RBQ-2A can be used to help adults decide whether their behaviors and interests are indicative of a disorder that may necessitate formal treatment.
A 2009 study published in Sleep Medicine Reviews noted parents report sleep problems for children with ASD at a rate of 50% to 80%; by comparison, this rate fell between 9% and 50% for children that had not been diagnosed with ASD. The rate for children with ASD was also higher than the rate for children with non-ASD developmental disabilities.
In a recent study titled ‘Sleep Problems and Autism’, UK-based advocacy group Research Autism noted that the following sleep issues are common among children and adults with ASD.
The study also pinpointed several underlying causes for these sleep problems that are directly or indirectly related to the individual’s ASD diagnosis. These include:
People with ASD often struggle with daily pressures and interactions more than individuals who do not live with the disorder. Lack of sleep can greatly exacerbate the feelings of distress and anxiety that they experience on a frequent basis. As a result, may people with ASD who have trouble sleeping may struggle greatly with employment, education, and social interaction — all of which can impact their outlook on life.
Persistent sleep problems in people with ASD may indicate a sleep disorder. Insomnia is the most commonly reported sleep disorder among adults and children with ASD. Insomnia is defined as difficulty falling and/or remaining asleep on a nightly or semi-nightly basis for a period of more than one month. A study published in Sleep found that 66% of children with ASD reported insomnia symptoms. A similar study from 2003 found that 75% to 90% of adults then-diagnosed with Asperger syndrome reported insomnia symptoms in questionnaires or sleep diaries.
In addition, parasomnias such as frequent nightmares, night terrors, and enuresis (bedwetting) have been widely reported among children with ASD, particularly those once diagnosed with Asperger syndrome. The child’s inability to express their fears and discomforts upon waking — often due to ASD — can complicate the way parasomnias are addressed and treated. Additionally, children with ASD often wake up in the middle of the night and engage in ‘time-inappropriate’ activities like playing with toys or reading aloud.
Sleep researchers are currently studying the relationships between other sleep disorders and ASD. For example, Dr. Steven Park recently noted a possible connection between ASD and obstructive sleep apnea (OSA), a condition characterized by temporary loss of breath during sleep resulting from blockage in the primary airway that restricts breathing. Dr. Park’s theory suggests that the intracranial hypertension found in many babies and infants with ASD may also cause the child’s jaw to take on an irregular shape, which can lead to sleep-disordered breathing as well. Other studies have explored the link between ASD and disorders like narcolepsy and REM Behavior Disorder. However, insomnia and parasomnias remain the most common sleep disorders among adults and children with ASD.
Next let’s look at treatment options and considerations for adults and children with ASD who are experiencing a sleep disorder.
Since the mid-20th century, prescription medications have been widely used to treat insomnia and other sleep disorders. The general consensus among today’s physicians is that sedative-hypnotic z-drugs, or nonbenzodiazepines, are the most effective pharmacological option for treating sleep disorders. The three most common Z-drugs — zolpidem (Ambien), zopiclone (Lunesta), and zaleplon (Sonata) — induce sleepiness without disrupting sleep architecture, unlike benzodiazepines like alprazolam (Xanax) and diazepam (Valium), which can actually worsen sleep disorder symptoms in some patients.
However, z-drugs and other prescription medications may be problematic for people with ASD. These drugs carry high dependency risks, and may cause side effects that exacerbate ASD-related physical problems like acid reflux and constipation. Additionally, sleep-inducing drugs may interact with other medications designed to help people with ASD feel more alert and focused throughout the day. The bottom line: people with ASD should consult their physician to discuss their current medication schedule before taking any sort of sleep medication.
Children with ASD are particularly susceptible to the dependency risks and negative side effects of sleep pills, so prescription drugs should be considered a last resort for them. If parents suspect their child with ASD has a sleep disorder, then a preliminary assessment should be their first course of action. These assessments may consist of actigraphy, where the child wears a sleep monitor on their wrist that tracks sleep-wake cycles, or PSG, which monitors neurological and cardiovascular activities during sleep. During this assessment, parents can help physicians rule out other factors that may be affecting their child’s sleep. These factors include medical issues like tonsillitis, swollen adenoids, epilepsy, and food allergies, as well as any medications they may be taking for ASD or ADHD.
It’s important to consider that many medications used to relieve ASD symptoms may be negatively impacting the sleep of those who take them. The table below lists some of the most commonly prescribed drugs used to alleviate repetitive behaviors, hyperactivity, inattention, and other symptoms of ASD, along with their sleep- and non-sleep-related side effects.
|Medication||Trade Name||What It Treats||Can It Cause Insomnia or Disturb Sleep?||Other Side Effects|
|Risperidone||Risperdal||Irritability and aggression, aberrant social behavior||Yes||Weight gain, constipation, diarrhea, nausea|
|Aripiprazole||Abilify||Irritability and aggression||Yes||Weight gain, nausea, upper respiratory tract infection|
|Clozapine||Clozaril||Irritability and aggression||Yes||Weight gain, tachycardia, constipation, enuresis, frequent nightmares|
|Haloperidol||Haldol||Irritability and aggression, aberrant social behavior||Yes, but rarely||Hypotension, constipation, dry mouth, muscle rigidity|
|Sertraline||Zoloft||Irritability and aggression||Yes||Elevated energy levels, poor concentration, diarrhea|
|Oxytocin||Pitocin||Aberrant social behavior||No||Elevated blood pressure, nausea, vomiting|
|Methylphenidate||Ritalin||Hyperactivity and inattention||Yes||Appetite suppression, dry mouth, anxiety, nausea, weight loss|
|Venlafaxine||Effexor||Hyperactivity and inattention||Yes||Headache, nausea, dizziness, dry mouth|
|Fluoxetine||Prozac||Repetitive behaviors||Yes||Headache, dry mouth|
|Citalopram||Celexa||Repetitive behaviors||Yes||Elevated energy levels, hyperactivity, diarrhea, dry skin|
If the preliminary assessment indicates the presence of a sleep disorder in a child with ASD, then treatment will likely be the next step.
The three common therapeutic approaches recommended for improving sleep among children with ASD include: cognitive behavioral therapy, light therapy, and sleep training. By implementing these interventions, studies indicate these can increase the parents “sense of competence and control,” which can make it easier to cope with the stress of raising a child with autism—and enable the parent to get better sleep themselves.
Cognitive behavioral therapy for insomnia (CBT-I) has proven fairly effective in alleviating sleep disorder symptoms for young people with ASD. CBT is designed to improve sleep hygiene in patients by educating them about the science of sleep and helping them find ways to improve their nightly habits.
For a child with autism, the therapist will consult with the parent to understand their child’s current sleep behaviors, thoughts and opinions surrounding sleep, and sleep environment. The therapist will then work with parents and children to develop an individualized treatment plan, which may include:
In addition to CBT, light therapy (also known as phototherapy) may also help children with ASD sleep better. This form of therapy is usually conducted using a light-transmitting box kept near the child’s bed.
Light therapy boxes are distinct from traditional lamps. These lights are designed to mimic the 10,000-lux of natural sunlight, but without UV rays. By having your child sit in front of the box for 15 to 30 minutes per day—either early in the morning or afternoon, depending on how their sleep cycle is offset—this therapy can help boost melatonin production and make children feel more alert throughout the day.
A study published in the Journal of Pediatric Neuroscience noted that children with ASD are often set in their routines, so establishing a consistent bedtime schedule can be quite beneficial to them. A healthy bedtime schedule might consist of the following:
Additional behavioral interventions may help children with ASD improve their difficulties with sleep. According to a ‘Sleep Tool Kit‘ published by the Autism Treatment Network, these interventions include the following:
Therapy interventions are often effective, but some children may not respond as well to them. If this is the case, then parents may want to consider some sort of pharmacological treatment. In lieu of prescription pills, the two options below are considered the most suitable route for children with ASD — though parents should not give either of these to their child before consulting a physician:
The Center for Autism and Related Disorders notes that parents should avoid giving certain over-the-counter medications to children with ASD, including sleep-inducing antihistamines like Benadryl that are often erroneously used as sleep aids.
Finally, if none of these sleep improvement strategies work, then parents may want to consider prescription medication. Rather than turning to z-drugs or benzodiazepines — which are primarily intended for adult consumption — children with ASD may respond well to these two prescription drugs.
Z-drugs, benzodiazepines, and other stronger prescription sleep pills may be suitable for some adults with ASD who are experiencing insomnia and other sleep disorder symptoms. However, adults are also encouraged to seek out cognitive behavioral therapy options and over-the-counter supplements like melatonin before resorting to prescription drugs. Adults with ASD should meet with their physician to discuss which treatment pathway is best for them.
Therapy and prescription medication can be an effective way to reduce problems associated with sleep disorders and disturbances. However, people with ASD may also experience improvements by simply establishing a healthy nighttime routine and improving their sleep hygiene.
Strategies adults can use to minimize sleep issues and get a good night’s sleep on a regular basis include:
Parents of children who have been diagnosed with ASD and are experiencing sleep problems can also use the strategies listed above to help their kids get enough rest each night. The established bedtime routine schedule discussed in the previous section can also be useful. Additionally, here are a few more tips for parents of sleep-deprived kids with ASD.
For more information about the relationship between ASD and sleep difficulties, please visit the following online resources.
ASD in Adults
ASD in Children
ASD and Sleep in Adults
ASD and Sleep in Children