It is estimated that around one percent of the population around the globe has autism spectrum disorder (ASD). As this incidence rate has increased over the last decade and more people are aware of ASD, interest has grown among specialists in further researching this disorder and exploring its links to other conditions, including mental health conditions and sleep-related problems and disorders. According to recent studies, of the people diagnosed with ASD, the majority, from 50% up to 80% of children and adults has some form of a sleep problem. It is due to many different factors either directly escalating from the disorder in point, medication for maintaining it, a combination of different medications or due to another present condition complicating things all the more. The most affected are those who are pinpointed on the low end of the spectrum, with regularly reported issues with either inducing sleep or maintaining it throughout the night. As a result of the inadequate amount of sleep, some depictive behavioral traits of ASD such as aggression, poor concentration, hyperactivity, and nervousness are aggravated and often magnified, leading to additional daytime struggle and decreased performance at school or work.
In this article, we will cover the precise sleep difficulties frequently faced by people with ASD, some appropriate treatment options and longer-term coping advice to remove some of the due stress and make these issues more manageable. But before all that, let’s get a bit more familiar with what ASD actually is.
What is Autism Spectrum Disorder?
Autism spectrum disorder is a lifelong condition that interferes with how people perceive life, form relationships and communicate with those around them. Despite many attempts at researching and identifying it, the exact cause of ASD is unknown; it is believed to occur resulting from a combination of complex genetic and environmental factors. People with ASD have specific needs depending on how debilitating their disorder is, and, albeit a cure doesn’t exist, with the appropriate amount of support, they are able to live long and fulfilling lives.
ASD is almost always diagnosed in the patient’s early childhood. Children under four years old already display symptoms that single them out from other children. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), one of the most renowned manuals on mental health disorder diagnosis and treatments worldwide, a patient can be diagnosed with ASD if fulfilling the following criteria:
- ‘Persistent deficits’ in communication and social interaction that occur in multiple settings. It includes not being engaged in social interactions, having poor verbal and nonverbal communication skills (unawareness of other people’s personal space, being sensitive about their own personal space, rejecting social invitations, reacting negatively to being hugged or when being asked to do something, avoiding eye-contact, differentiating between facial expressions when communicating, not picking up on the tone of voice or sarcasm in back-and-forth communication, etc.), displaying some nervous tics, etc. Adults and children with ASD aren’t fully capable of understanding, cultivating or differentiating relationships with others.
- Restricted, repetitive behavioral patterns in speech (repeating a phrase or word group, or impersonating speech), repetitive body movements (rocking in place, clapping hands, etc.), fixed daily rituals and routine use of some objects in a specific way; being very inflexible about these patterns and reluctant to break from them. These symptoms are frequently accompanied by increased or decreased sensitivity to sensory stimuli like smells, light, noises, colors, etc. and fixation on certain subjects of interest.
- Symptoms must be or have been present during the early development period. As mentioned before, a child who has an ASD will display symptoms as early as in their second year. Symptoms include specific behavior patterns, maybe lining up toys based on their color, using toys in an otherwise different way than a so-called “neurotypical” child might, being reluctant to socialize, preferring to play alone, communicating in learned phrases rather than combining words to form new sentences, etc. Even when people are diagnosed later in life, the symptoms of their particular disorder must have been present all along.
- The symptoms are not ‘better explained’ by the presence of another condition. An accompanying condition in addition to ASD, like an intellectual disorder, is not irregular, but it is important to distinguish the two as distinctive, with separate diagnostic criteria.
The spectrum is a tool used to determine how debilitating the disorder is in an individual by evaluating how much support they need to navigate everyday situations. A person with a disorder classified as “high functioning” requires less help and is, with some difficulties, capable of handling day-to-day life, as opposed to a person whose disorder is classified as “low functioning” on the spectrum — this end groups people whose disorders are more extreme and can’t manage without very substantial support.
There are four categories of ASD that most people affected can be grouped in:
- Asperger syndrome. Many people with this syndrome are high-functioning. Symptoms include hypersensitivity, fixation on certain subjects of interest, inability to recognize some gestures in communication.
- Autistic disorder – usually classified somewhere in the middle between the high and low end of the spectrum.
- Childhood disintegrative disorder (CDD) – severe, lower end disorder, diagnosed most commonly in children of under four years old. With a very small socializing and cognitive ability window, children with CDD often develop seizure disorders.
- Pervasive development disorder, not otherwise specified (PDD-NOS) is a term used for diagnosing any disorder that didn’t fall into the three previous categories; people diagnosed with PDD-NOS can be placed anywhere on the spectrum, with displayed symptoms from the most severe to the mildest of all the disorders.
How Autism Spectrum Disorder Affects Sleep
People with ASD frequently experience difficulties with sleep. Some of the common ones include:
- Issues inducing sleep
- Sleep maintenance issues
- Increased daytime sleepiness
- Anxiety around bedtime
- Difficulty waking up in the morning
The root of these problems is always linked or directly induced by the person’s specific disorder, with some common, overlapping causes such as the following:
- Medical conditions or problems, the most common one being neurological – epilepsy. Seizures can cause major and sometimes frequent sleep problems. Acid reflux and diarrhea are often in people with ASD as well, making them wake up during the night, delay going to sleep, and the quality of sleep is disrupted.
- Mental health disorders, such as depression, anxiety, and attention-deficit hyperactive disorder (ADHD) are common in children and adults with ASD. These conditions are often accompanied by secondary insomnia or some other sleep disorder because they make it difficult to calm down and fall asleep; even if the condition in point didn’t inherently cause sleep problems, any medication potentially used to subside it could also affect sleep.
- Side-effects of ASD medication, for example, selective serotonin reuptake inhibitors (SSRIs) or antipsychotics, often include excessive sleepiness during daytime, and anxiety or restlessness in the evening, depending on the type of medication. It makes it harder for people with ASD to onset sleep or avoid being exhausted.
- Atypical circadian rhythm and melatonin production. The circadian rhythm is in charge of timing our sleep to match the dark-light periods of the day. Impairment of circadian rhythm, along with irregular secretion of the hormone melatonin, greatly influences a person’s sleep pattern, duration, and overall quality. A lot of people with ASD have an atypical circadian rhythm, causing them frequent sleep difficulties.
People who live with ASD already have a harder time navigating their daily life than people who don’t have this disorder. Heightened stress in itself means they often require more sleep to be able to function to their best ability. Lack of sleep can further the struggle they go through, and over time issues with sleep can develop into disorders.
Insomnia, the difficulty falling and staying asleep is the leading sleep disorder reported among people with ASD, with the incidence rate for adults being up to 90%, and 66% in children. Among children, parasomnias (night terrors, nightmares and enuresis) are also very prevalent, with the added diagnostic difficulties of the child’s inability to explain these occurrences and their own distress or fear. Upon waking up from such an episode, many children will get up and play or do something else instead of going back to sleep.
The link between ASD and other sleep disorders is highly debated among mental health and sleep specialists.
Treatment Options for Sleep Issues Related to ASD
Sleep medication is often prescribed to treat sleep onset and maintenance issues. Benzodiazepines, Z-drugs and other pills are all FDA approved for insomnia treatments, but the majority of them have some serious side-effects. The dependence potential, especially for children, is one strong reason for people with ASD to avoid sleeping pills altogether. Even for people without this disorder, sleep medication is not advised unless necessary, and under special circumstances; pregnant women, people with liver problems, high blood pressure and some other medical or neurological conditions, along with people who take other medication would all be ill-advised to take sleeping pills. Some people who have ASD might fall under this category as well, for two reasons:
- Along with the dependency risk, other sleep medication side-effects might increase some of the ASD problems like acid reflux.
- People who live with ASD often already take some medication to ease their condition; adding other pills shouldn’t be a quick choice, as the interaction of the two can potentially cause severe complications.
These points should be carefully considered before opting for sleep pills.
Instead, the treatment will probably first involve cognitive behavioral therapy (CBT). Children with ASD are often very strict about their routines, so a well-planned sleep routine might be useful. This routine might include changing into PJs, brushing teeth, using the bathroom, laying in bed and switching off the lights. While attempting this with a child, it is important for the parent to be very clear with what is going to happen; using visual aids to help explain the process to the child, limiting the number of steps and positively reinforcing the child when a step is followed through can be very useful in establishing the routine.
Additionally, light therapy might help with sleep. Exposing the child to bright light when they wake up can help raise their alertness levels during the day.
If the child doesn’t respond well to the first two methods, pharmacological treatments can be considered. A doctor might prescribe:
- Melatonin – children with ASD often have a decreased melatonin secretion in their brain, so a boost can help induce sleep. Risks and side-effects are low compared to sleep medication, but some nausea or dizziness is possible;
- Dietary supplements like valerian root, iron, some multivitamins, etc. are sometimes helpful for onsetting and maintaining sleep. The possible harmful effects are even lower than with melatonin.
Finally, if nothing stated above works, the parents of a child with ASD might consider prescription medication. Because of the smaller relative risks compared to common prescription medication, the only pills indicated for children are the following:
- Clonidine. An antihypertensive pill that treats ADHD and tic disorders, Clonidine can be used before bed to onset sleep. It carries a lower dependency risk than Z-drugs and other common sleep drugs
- Mirtazapine is an antidepressant used to relieve insomnia and anxiety but has potential side-effects like suicidal thoughts, so it’s not recommended for adolescents and some other patients.
Treatment for adults with ASD, although also starting with CBT, might include some stronger medication as well. It is vital to discuss all options with a specialist before deciding on anything, and unless otherwise advised, don’t take over-the-counter pills.
Sleep Management Suggestions for People Living with ASD
Treating sleep disorders and issues is important, but staying free of them is impossible if proper sleep hygiene isn’t kept. Below are some ideas on how to make bedtime less of a struggle for people with ASD:
- Avoid stimulating substances like alcohol and caffeine, especially in the evening. These will either keep you awake or disrupt your sleep later on.
- Don’t eat foods high in sugar or fat shortly before bedtime. Opt for healthy, more balanced meals with lots of vegetables and fruit whenever possible.
- Use the bed only for sleep. Associating it with many different activities might confuse the brain and delay sleep onset.
- Turn all electronics off at least half an hour before going to sleep to boost melatonin secretion and better sleep.
- Don’t nap in the late afternoon, and for longer than half an hour.
- Make the bedroom an inviting, relaxing place. Check if the temperature isn’t too low or too high and if the mattress is comfortable; declutter it as much as possible, keep your smartphone or tablet in another room, install lights that can be dimmed, pick a cool, calming color palette for the walls.
- Keep a sleep log. Use drawings, writing or any method you feel comfortable with to describe your sleep patterns, dreams, any changes in when you fall asleep or how many times you wake up during the night. It will also be useful for a doctor during future visits.
Co-founder of Counting Sheep and Sleepaholic