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Sleep and Autism

Sleeping womanSleep problems are very common in autistic people but not all autistic people have sleep problems.

Those sleep problems include difficulty falling asleep, waking during the night, erratic/irregular sleep patterns, shorter total sleep, other arousals/ disturbances and daytime sleepiness.

There are a number of factors associated with sleep problems in autistic people. These include 

  • Learnt behaviours, such as not knowing when and how to fall asleep.
  • Adherence to routines and repetitive behaviours.
  • Sensory sensitivities, such as finding certain noises disturbing or frightening.
  • Neurological conditions, such as abnormal circadian rhythm (body clock) or epilepsy.
  • An “active mind” with “racing thoughts” and the inability to unwind and let thoughts go.
  • Coexisting developmental conditions, such as attention deficit hyperactivity disorder.
  • Mental health problems, such as anxiety and depression.
  • Medical problems, such as reflux and constipation.
  • Side effects of medications, such as stimulants.
  • Use of electronic devices, such as computers, as part of the bedtime routine.

Taken together, these problems may make it difficult to function normally, to attend school/college and/or to hold down regular employment.

There are a number of interventions designed to overcome sleep problems in people. These include behavioural approaches, medications, and dietary supplements.

There is very little research evidence on the effectiveness of most of these interventions for autistic people. 

The National Institute for Health and Care Excellence (NICE) and the Autism Treatment Network (ATN) Sleep Committee have each developed clinical guidelines on how to approach and treat sleep problems in autistic children and adolescents.

These guidelines stress the importance of drawing up an appropriate treatment plan based on identifying the underlying cause or causes of the specific sleep problems.

Further research is required to examine the impact of poor sleep on autistic people and to examine those interventions which appear to be effective.

Personal Accounts

The following is a list of personal accounts of sleep problems encountered by autistic individuals, their parents and carers.

Donna Williams

"I was afraid to sleep, always had been. I would sleep with my eyes open and I did this for years. I guess I did not appear to be terribly normal. 'Haunting' or 'Haunted' would have been better adjectives. I was afraid of the dark, though I loved the early dawn and dusk." (Donna Williams, 1998.)

Luke Jackson

"I have had enormous problems both getting to and staying asleep ever since the day I was born. It is a real pain I can tell you. You just cannot imagine what it feels like to lie there bored senseless, awaiting daylight and the time when it is deemed OK to get up. I didn't used to like the dark either. My room and my things are familiar, my security. The dark creeps in and steals that familiarity and security away." (Luke Jackson, 2002)

Temple Grandin

"At night, I cannot get to sleep if I hear high-pitched, intermittent noise such as a backup alarm on a truck or children yelling in the next hotel room; they make my heart race. Thunder or airport noise does not bother me, but the little high-pitched noises cannot be shut out." (Temple Grandin, 2000)

Alison Blake

"Sleepless nights are to be expected when you have a baby, but what I didn't expect was to be sleep deprived for 13 years! My daughter, who was diagnosed as on the autistic spectrum when she was 6, had sleep problems from the day she was born, as do many children with autism. Not only did she battle against going to bed or to sleep, but also she would wake up throughout the night and then have difficulty falling back to sleep. She had no respect for night or day, dark versus light!" (Alison Blake, 2005)

Jacqui Jackson

"We have tried everything to improve the children's sleep patterns, from drugs to homeopathy and massage. I have tried everything I can. One thing that did have a slight effect was melatonin, but nothing worked well or for long. I am not superwoman, but I can go on with two or three hours a night, sometimes without any sleep at all.

"Luke, aged 18 has Aspergers Syndrome and has erratic sleep patterns. When he was younger he slept during the day, even now his sleeping is fitful. Ben, who is aged nine and autistic, has still not slept for a full night. Joe, aged 13 has ADHD and sleeps soundly once asleep, but Jacqui said it takes a lot of time to get him to drop off. And Matthew, who is 23, who has milder autism, had and still has problems sleeping."

(Source: BBC website, April 2006)

Statistics

Research suggests that sleep problems affect between 40% to 80% of autistic people.

In a 2004 survey of the membership of the National Autistic Society in the UK, over half of the respondents reported significant sleep problems.

Causes

There are various factors which may be associated with sleep problems in autistic people including:

  • Learnt behaviours, such as not knowing when and how to fall asleep.
  • Adherence to routines and repetitive behaviours.
  • Sensory sensitivities, such as finding certain noises disturbing or frightening.
  • Neurological conditions, such as abnormal circadian rhythm (body clock) or epilepsy.
  • An “active mind” with “racing thoughts” and the inability to unwind and let thoughts go.
  • Coexisting developmental conditions, such as attention deficit hyperactivity disorder.
  • Mental health problems, such as anxiety and depression.
  • Medical problems, such as reflux and constipation.
  • Side effects of medications, such as stimulants.
  • Use of electronic devices, such as computers, as part of the bedtime routine.

Effects

Sleep problems affect each autistic individual in a different way. For example:

  • Lack of sleep is associated with exhaustion in the autistic individual, as well as in their parents, siblings, partners and other carers
  • Sleep problems are associated with difficulties with thought processes and emotions. They can worsen the symptoms of autism and produce challenging behaviours
  • Poor sleep is associated with impairments in learning and memory
  • Sleep problems and associated issues can make it very difficult to function at home, at school/college or in the workplace

Interventions

Most of the interventions (treatments, therapies and other forms of support) used to help autistic people with sleep problems are the same as those designed to help anyone with sleep problems. For example, it can be difficult to get to sleep if you don't have a regular bedtime routine, if you are distracted by excessive light or noise, you use electronic devices like computers as part of your bedtime routine, if you have underlying health problems, or if you are constantly worried about something. It is important to identify and, if possible, eliminate these problems before considering other solutions.

Behavioural approaches

There are a number of behavioural approaches used to help people with sleep onset and night waking problems. These include:

  • Bedtime fading: going to bed at progressively earlier times, working back in blocks of 10-15 minutes from the time they actually fall asleep.
  • Scheduled awakening:  waking someone up at predetermined times, usually 30 mins or so, before they normally wake in the night
  • Sleep restriction: limiting the time someone spends in bed to 90% of the time they normally spend in bed.
  • Extinction procedures: removing parental involvement during bedtime disruptions. This can be done abruptly (e.g. the parent puts the child to bed and doesn't interact with them until morning) or more gradually (e.g. reducing parental involvement over successive nights or only going in at predetermined times).
  • Camping out: the parent sleeps in the bedroom by the bed and gradually moves out.
  • Parent training programmes:  educational programmes which teach parents how to use one or more of the techniques listed above.
  • Cognitive behavioural therapy:  type of psychological intervention used to change how people think and behave.

Biomedical approaches

There are a number of biomedical approaches used to help autistic people with sleep problems.

  • Medications with sedative properties (such as mirtazapine); anti-hypertensives (such as clonidine); and the hormone melatonin.
  • Dietary supplements include 5-HTP, iron, kava, multivitamins, and valerian.
  • Exclusion diets involve restricting or removing certain foodstuffs, such as sugar, caffeine and/or additives.

Other approaches 

There are numerous other interventions designed to help autistic people with sleep problems. Those interventions include aromatherapy, exercise programmes, homeopathy, light therapy, massage, mindfulness, weighted blankets and yoga.

Please note

Some medications and supplements should only be used for a limited period and under the direction of a suitably qualified practitioner, such as a GP or a dietician. Some medications and supplements have significant side effects or interactions with other substances. Some medications and supplements may actually make sleep problems worse.

It is wise to seek appropriate professional support before attempting any sleep intervention.

Current Research

  • There is very little research evidence on the use of interventions to help autistic people with sleep problems.
  • There is limited/inconclusive evidence on whether any interventions help autistic adults with sleep problems.
  • There is stronger research evidence to suggest that some behavioural approaches are beneficial in treating sleep problems in autistic children and young people.
  • There is stronger research evidence to suggest that melatonin may be effective in decreasing the time it takes some autistic children and young people to fall asleep especially when used in conjunction with behavioural approaches.
  • There is limited/inconclusive evidence on whether other drugs help autistic people with sleep problems.
  • There is limited/inconclusive evidence on whether other dietary supplements are beneficial in treating sleep problems in autistic children and young people.
  • There is limited/inconclusive evidence on whether any of the other interventions currently being used (such as aromatherapy, massage therapy) are effective in the treatment of sleep problems in autistic children and young people.
  • A single, high-quality trial (Gringras et al, 2012) has suggested that weighted blankets are not effective.
  • There is limited evidence that some interventions (such as aripiprazole, methylphenidate and omega-3 fatty acids) may actually increase sleep problems in some autistic people.

 

Future Research

There is a need for further research into the sleep problems of autistic people and the most effective interventions to overcome those problems. Specifically there is a need for studies which:

  • Examine the impact of poor sleep on autistic people and replicate and extend existing research into interventions which appear to be effective.
  • Identify which individuals are most likely to benefit from those interventions and examine other interventions which may be beneficial.
  • Focus on the development and evaluation of standardised parent training programmes.
  • Develop contextually appropriate interventions, that is, interventions which will work with culturally and linguistically diverse families.

Best Practice

We have identified a number of organisations that have published best practice guidance on sleep and autism.

NICE Guidance on Sleep in People on the Autism Spectrum

The National Institute for Health and Care Excellence (NICE) is a UK government body which supports healthcare professionals and others to make sure that the care they provide is of the best possible quality and offers the best value for money.

NICE has not made any recommendations on sleep problems in autistic adults.

NICE has made the following recommendations on sleep problems in autistic children and young people.

  • The first step should be a full assessment of any sleep problem to determine its precise nature and any factors that might be contributing to it, such as the sleep environment, co morbidities (other conditions) and current medication
  • Following the assessment, parents and carers should be supported to develop a sleep plan to encourage the child or young person to develop positive sleep habits, and use a diary to record sleeping patterns and bedtimes
  • Medication should not be considered until it is clear behavioural interventions would be ineffective and the child or young person's negative sleep behaviours would persist and have a detrimental impact on them and their family or carers
  • Medication should only be used following consultation with a specialist paediatrician or psychiatrist who has expertise in the management of autism or paediatric sleep medicine, and in conjunction with behavioural interventions
  • Any medication to aid sleep should be regularly reviewed to ensure that that its benefits continue to outweigh the side effects and risks in children and young people with autism.
  • Loud snoring, choking or witnessed apnoeas (the cessation of airflow during sleep preventing air from entering the lungs caused by an obstruction) should prompt referral to a sleep expert to exclude diagnosis of obstructive sleep apnoea.

Source: The management and support of children and young people on the autism spectrum. (2013). London: National Institute for Health and Clinical Excellence.

Further information: Please see NICE Clinical Guidance on Sleep in Children and Young People with Autism

Sleep Committee of the Autism Treatment Network

The Sleep Committee of the Autism Treatment Network is a US-based organisation which consists of pediatric sleep medicine specialists as well as developmental pediatricians, neurologists, and psychiatrists.

The ATN Sleep Committee has created a clinical practice pathway which is designed to assist primary care providers and others working directly with families affected by ASD in addressing the challenge of insomnia with regard to identification assessment, and management.

The pathway recommends that

(1) all children who have ASD should be screened for insomnia,
(2) screening should be done for potential contributing factors, including other medical problems,
(3) the need for therapeutic intervention should be determined,
(4) therapeutic interventions should begin with parent education in the use of behavioural approaches as a first-line approach,
(5) pharmacologic therapy [medication] may be indicated [used] in certain situations, and
(6) there should be follow-up after any intervention to evaluate effectiveness and tolerance of the therapy.

Source: Malow B.A. et al. (2012). A practice pathway for the identification, evaluation, and management of insomnia

Studies and Reviews

This  section provides details of some of the most significant scientific studies and reviews of sleep problems in autistic people. 

You may be able to find more studies and reviews on sleep in our publications database

If you know of any other publications we should list on this page please email info@informationautism.org

Please note that we are unable to supply publications unless we are listed as the publisher. However, if you are a UK resident you may be able to obtain them from your local public library, your college library or direct from the publisher.

Related Studies and Reviews


Other Reading

This section provides details of other publications on sleep problems, autism and related issues.  

You may be able to find more publications on sleep in our publications database.

If you know of any other publications we should list on this page please email info@informationautism.org

Please note that we are unable to supply publications unless we are listed as the publisher. However, if you are a UK resident you may be able to obtain them from your local public library, your college library or direct from the publisher.

Related Other Reading


Additional Information

Literature Review

The purpose of our literature review was to identify existing scientific reviews and clinical guidance on the topic of sleep and autism in order to provide evidence for our own review on this topic.

Search Terms

We used a variety of search terms, including synonyms and related terms for autism (such as Asperger syndrome), sleep (such as insomnia), intervention (such as treatment), review, and clinical guidance.

Results

We identified 26 reviews and 2 clinical guidance documents, as well as more than 200 other research studies.

Please see Research for details of the reviews, and Reading for details of the clinical guidance documents and other publications, we used in the review.

Where we identified a useful publication on this topic but did not include it in our review, we added it to Research Autism Publications Database.

Strengths and Limitations

Our review was limited to an analysis of reviews and clinical guidance on sleep problems in autistic people, published between 1990 and 2013.

It was not intended to be a systematic review of all research studies on the topic of sleep in autism, nor we did we carry out a meta-analysis of the reviews we identified.

Summary of Review

You can find a summary of our review, the Essential Guide to Sleep and Autism in the Reading section of this entry.

Updated
16 Jun 2022
Last Review
01 May 2018
Next Review
01 May 2021