I picked up the car in my hand and in one adrenaline charged action tossed it all the way from Campbelltown to Glenelg. There was no driver in the car, it was a tormenting noise polluter that made my baby toss and turn in his cot, on the verge of waking. One by one, I threw every car that threatened to pass by my baby’s window to the other side of Adelaide, an imagining that somehow channeled some of the excess adrenaline away from my anxious sleep deprived brain.
The sleep clinic had helped, such that now I could achieve more than 3hrs of sleep in a 24 hour period but Jeremy would always prove challenging with sleep and I could expect another 2 years of sleep deprivation until he finally slept through the night consistently.
Jeremy temporarily started sleeping through the night at around 18 months of age (shortly after Damian was born) but the very night that Damian started sleeping through the night not long afterwards (at 2 months of age) Jeremy started waking again. Not long after that, I voluntarily admitted myself (on recommendation from my sister) to a mother-baby unit at a private psychiatric hospital, even though I knew that it wasn’t post natal depression that contributed to my highly anxious state (they diagnosed me with post natal adjustment syndrome). I knew that sleep deprivation and Jeremy’s behaviour was a major contributor to my reduced ability to function.
You see, when Jeremy wasn’t asleep he was demanding of my attention every single second. Unless, I entertained him constantly with singing and dancing, reading books and playing with baby toys he immediately became upset. Entertainment was the only thing that soothed him. I had to play games with him while he fed, while he watched passing vehicles at busy intersections (he enjoyed that) and while watching children playing in parks (he also enjoyed that). Even one thing at a time was not enough for Jeremy.
I could not go to the toilet or shower without having to entertain Jeremy at the same time there with me. I could not do any housework or cook while he was awake, and I scoffed commercial premade meals down as quickly as I could for sustenance and there was no time for snacks. At the best of times, I crave sleep and food and always have.
There was one defining moment when Jeremy was content on his own, lying on a rug in our lounge room for a whole 2 minutes. I was so stunned that I took a photo of him although I didn’t need to because the image is still clear in my mind. It was the only time as a baby that he was content without being entertained. Don’t ask me why… there was nothing extraordinary about that day, and that location or the events that led up to it.
You may think it strange that I choose to have another baby so close in age after Jeremy but the decision was partially made to give him a sibling to play with and it was a great decision. Damian and Jeremy are the best of friends (and the worst of enemies) with similar interests and it has taken an enormous pressure of me. In addition to the fact that it soothed him, I reassure myself that Jeremy benefited greatly from the early intensive attention in terms of learning through play, even though (when combined with sleep deprivation) it severely compromised my mental health.
As a result of this experience, I developed a strong interest in sleep and would like to share with you some of the more useful evidence-based recommendations for sleep in young children (over 6 months of age) including children with ASD that I have implemented, which have been successful in helping my boys to get a healthy and consistent amount of sleep.
In this blog (Part 1), I shall begin with an introduction to sleep and sleep problems among children with or without Autism Spectrum Disorders (ASDs) and then discuss the evidence supporting the first line of treatment for sleep problems, namely behavioural –educational interventions1.
What is sleep?
According to the scientific literature sleep is a ‘reversible condition of reduced responsiveness usually associated with immobility’2. Does anyone else find that description funny? We all know what sleep is, right!?
During sleep different areas of the brain responsible for different functions are activated and deactivated in specific patterns for specific purposes2. Sleep contributes to many physiological processes such as immunity, hormonal regulation, thermoregulation and ontogenesis2. Sleep also contributes significantly to neurological and psychological functions such as memory and learning, and emotion and reward processing2;3.
The nature of sleep problems among typically developing children and children with an ASD are similar however the prevalence of sleep problems is greater among children with an ASD. 20-40% of typically developing children are affected by sleep problems3;4;5 compared with 40-80% of children with an Autism Spectrum Disorder1;3;6;7.
Insomnia is the predominant sleep problem in children with an ASD8 who have been shown to exhibit shorter sleep time, lower sleep efficiency and differences in some of the stages of sleep and the activity within these stages3;6;7*compared to typically developing peers.
Moturi and Avis (2010) define insomnia in children as repeated difficulty with sleep initiation, duration, consolidation, or quality that occurs despite age- appropriate time and opportunity for sleep, which results in daytime functional impairment for the child and/or family9.
Sleep problems in people with ASD appear to be characteristic of the ASD rather than the person’s IQ level or age6;10 and the sleep –wake cycle of infant children with ASD has also been shown to have greater sensitivity to noise11. Has anyone else been told by their mother that you should be able to vacuum under your sleeping baby?
It is clear in the scientific literature that there are both substantial environmental and genetic influences on sleep behaviour and sleep problems12;13. Before Jeremy was born I was aware that genetics was not strongly in my favour for a content sleepy baby. A prospect that I thought was amusing until I experienced the true impact of a baby disturbed by gastroesophageal reflux disease (GERD), communication difficulties due to ASD and sleep problems.
My husband was regularly referred to as a very difficult baby due to sleep problems and was primarily responsible for a major age gap between him and his next sibling. As a baby, I slept reasonably well but was described by my mother as a “colicky baby” because when I was awake I cried excessively.
Sleep problems can result in significant impairments in daytime behaviour, memory and learning for young children3. In fact, there is a bidirectional relationship (i.e. one contributes to the other and vice versa) between the core symptoms of ASD and sleep problems3;10.
The sleep problems of children also impact upon their families with parents experiencing reduced sleep4;14 and the consequences of reduced sleep which include maternal depression4;15 and increased parenting stress15 resulting in overall decreased family functioning. When compared to parents of typically developing children, parents of children with ASDs reported poorer sleep quality, earlier morning wake time and shorter sleep duration14.
Behavourial interventions for sleep problems
In a recent review of the scientific literature, preventative behavioural – educational interventions have been found to promote maternal and infant sleep improve maternal mood, decrease fatigue and reduce parenting stress in both mothers and fathers with significant benefits for maternal depression maintained for up to 2 years15.
In fact, the effects on maternal depression, of behavioural interventions for infants with or without reported sleep problems, were so significant and long lasting that it led a team of researchers to conclude that ‘managing infant sleep represents a feasible, acceptable, low-intensity, and cost-effective preventive intervention approach for maternal depression’16.
Proper assessment of the cause of the sleep problems is important to determine the approach17. Wiggs et al. (2000) gives the example that ‘difficulty falling asleep may be due to a sleep-wake cycle disorder, limit setting sleep disorder, or anxiety-related sleep disorder and they would therefore require different treatment approaches, directed at the underlying disorder and not at the presenting symptoms’17.
My two sons both developed sleep problems at different times related to anxiety such as the fear of the dark and for Jeremy anxiety surrounding whether or not his dad would be at home or at work when he awoke. The simple and effective solution for Jeremy’s issue was to ensure that his dad said ‘goodbye’ every morning even if that meant waking him up a little earlier. Damian’s anxieties regarding his fear of monsters and the dark were a little more involved but with the help of a child psychologist (with experience in ASD) we successfully overcame that sleep problem too.
It is not uncommon for behavioural sleep problems to co-exist with sleep disorders so behavioural intervention is often still recommended in addition to other treatments17.
In general, the most effective forms of behavioural interventions include implementation of consistent bedtime routines incorporating quiet soothing activities18 and extinction-based (removing reinforcement to reduce a behaviour) interventions such as ‘controlled crying’ and ‘camping out’16;19.
A bedtime routine consists of implementing the same activities in the same order immediately before bed18. Bedtime routines were found to be highly effective to reduce the time taken to go to sleep once in bed (latency to sleep onset) and in the number and duration of episodes of night waking with an associated improvement in maternal mood18.
Extinction –based interventions such as controlled crying and camping out are only recommended for infants and children over the age of 6 months15. Meltzer et al. (2011) explain that at this time in their development sleep begins to consolidate, with infants establishing a circadian rhythm and no longer needing to feed during the night15.
‘Controlled Crying’ involves having ‘parents respond to their infant’s cry at increasing time intervals, allowing the infant to fall asleep by itself’19. Commonly used time intervals are 2 minutes apart: 2 min, 4 min, 6min, 8 min, and 10 min. I used time intervals that doubled in length: 1 min, 2 min, 4 min, 8 min, and 16 min with my boys. I rarely got passed the first two intervals before they settled.
‘Camping Out’ involves having the ‘parents sit with their infant until the infant fell asleep and gradually removed their presence’19 usually over a period of several weeks.
Behavioural techniques have been shown to be effective for treating sleep problems in children and adolescents with chronic physical illness, psychological problems and intellectual disabilities17. Although, it is generally recommended that more gradual methods of extinction rather than complete extinction are implemented for children with particular physical illnesses (such as asthma or epilepsy) or for those who might damage themselves or their environment if not attended to17. In addition, nighttime respite care is also recommended to be of benefit for parents of children with chronic illness and sleep problems for overall improved outcomes for the children and parents15.
Please refer to the following link for more detailed instruction on how to help your child sleep better using the behavioural techniques mentioned above http://raisingchildren.net.au/articles/controlled_comforting.html
Another behavioural approach that has shown some evidence of success in children with other diagnoses includes sleep scheduling, which involves implementing consistent and appropriate sleep and wake times17. This can be achieved by starting with a later bedtime to link bedtime and sleep onset and then gradually moving the sleep time forward by 15 to 30 minutes17. This was found to be even more effective when a ‘response cost’ component was added17. The response cost component involved removing the child from the bed for 1 hour if not asleep within 15 minutes, to better improve the link between bed and sleep17.
Bedtime routines and extinction techniques appear to be effective for children with sleep problems who also have a diagnosis of ASD6;8;20. Vriend et al. (2011) recommends that behavioural techniques should be tailored to each child with an ASD taking into account the preferences and competencies of their families1.
For children with ASD successful extinction techniques have included visual representations of bedtime routines, positive reinforcement procedures such as praise and rewards for compliance, and regardless of compliance with nighttime routines parents were encouraged to give the child plenty of positive attention during the day20.
In children with other diagnosed conditions, it is important not to assume that the sleep problem is an inevitable and untreatable part of that child’s other condition17. I made that mistake with Jeremy. After employing all the recommended behavioural interventions for sleep and then some, I assumed that Jeremy’s difficulties going to sleep and resultant late sleep onset and reduced sleep duration was just a byproduct of Jeremy’s uniqueness that was unavoidable.
I can’t recall exactly when we implemented a consistent bedtime routine and bedtimes for our boys but we have had those strategies in place for many years now and I had taught Jeremy from an early age (using extinction techniques, general education about sleep through books and discussion, positive reinforcement of compliance) that he was to lie in bed until he fell asleep and not play or yell out at night time.
Jeremy had become very obliging after all our interventions and often lay in bed quietly for over an hour before going to sleep regardless of the bedtime. It was during an appointment with a pediatrician to address another health complaint that the pediatrician asked about his sleep and suggested trialing melatonin and I am so glad that the pediatrician was so thorough for Jeremy’s sake. I will elaborate more on this in my Part 2 of my sleep blogs (coming soon).
Although, there are few arguments against a good bedtime routine as being beneficial for children’s sleep, parents may find extinction techniques anxiety-provoking in the short term due to ‘post extinction bursts’. Post extinction bursts may occur during implementation of extinction techniques and are characterized by a temporary escalation of targeted behaviour such as more intense crying before finally settling20.
In the case of extinction techniques, although they are generally accepted by the scientific community and health professionals as successful and beneficial techniques for improving sleep problems, one group of researchers suggests that the ethics of the techniques are questionable21.
An article by Blunden et al. (2011) claims that extinction techniques are ‘morally wrong’ because we are not meeting the ‘needs’ of our infants by ‘ignoring their cries’ and that nighttime crying has been unnecessarily ‘pathologized’21.
Blunden et al. (2011) states that although, long term negative consequences of extinction techniques to the child’s development have not been reported and are therefore ‘unknown’, ‘caution should be extreme’ when considering applying extinction techniques21.
However, in the same article Blunden et al. (2011) acknowledges that ‘sleep disruption to due to infant sleep problems is frequently associated with parental ‘depression and other physical and mental health issues’, sleep disturbances are a concern for parents in that they ‘are the most common issue for which medical assistance is sought by parents in the first year of their infants’ life’ and that ‘these methods all achieve a relatively rapid reduction in night time protests, encourage ‘self-settling’ or solo re-initiation of sleep, and improve sleep consolidation with low relapse rates’21
A response to the article by Blunden et al. (2011) was published (which tends to happen when inflammatory opinion pieces are published) to counter their arguments. Sadeh et al. (2011) accuses the authors of being ‘dismissive of the very real consequences it (sleep problems) has on children and families’ and of advocating against solo sleeping when the evidence does not support that22. The article also argues that the ‘vast majority of modern behavioural techniques are based on some degree of continued caregiver response to the infant throughout the sleep initiation or resumption process’21.
In addition Sadeh et al. (2011) also pointed out the potential detrimental effects of sleep problems to the infant, in that sleep problems are associated with ‘perceived difficult infant temperament, increased likelihood of later behaviour problems, compromised cognitive abilities and increased body weight’ and that ‘infants who develop total reliance on parental soothing behaviours are more likely to wake-up more often and require extensive parental interventions’22.
In fact, well conducted longitudinal articles4;16;23 on the long term effects of ‘graduated extinction’ techniques and ‘camping out’ have shown them to be safe for use in infants, with children in the treatment and control groups showing no differences in mental health outcomes (externalizing or internalizing problems) in the years following implementation of the techniques. Parenting practices were also shown to be no different between parents of the treatment and control groups in terms of parenting practices (harsh discipline versus nurturing) and mothers often reported an improved relationship between themselves and their child16.
In the early weeks, I chose not to co-sleep with Jeremy in the same bed because his sleep was even worse when lying next to me. He was never able to sleep next to me effectively. I believe this was partly because of his need to sleep on a significant slope due to GERD and partly because he associated me with play and attention. In desperation, I even tried sleeping holding Jeremy in a baby carrier on my belly one night propped up by pillows, but it was not a position I could safely hold or sleep in.
When Jeremy was a few weeks old, I had to move him into another room because he frequently made loud grunting noises while he was asleep that kept me awake throughout the night. I later attributed the grunting noises to his speech delay and ongoing articulation difficulties. He didn’t cry or babble like other babies and his distress sounds were different.
As mentioned previously, I attended a sleep clinic for Jeremy (when he was 8 weeks old) which helped make sleep manageable for us. The sleep clinic helped me to incorporate more effective swaddling, routine and settling/re-settling techniques.
I also chose to use controlled crying when Jeremy was 6 months old due to his sleep problems, which improved the night-time settling process for us, but there was still a long way to go to before we all achieved good night sleeps.
Personally, I am completely supportive of people of the infant sleeping choices people make. I believe people should make choices that they are comfortable with that may also change depending on the circumstances. I also believe that it is irresponsible to judge a person’s choices without empathy for the unique circumstances that each person and family faces especially when the evidence does not support one choice over another.
Note: Always address any medical concerns including sleep and behavioural concerns with your child’s GP and/or Pediatrician.
*A discussion of the stages of sleep (macro architecture) and the brain activity during the stages of sleep (micro architecture) is beyond the scope of this blog. Please refer to the articles by Cortesi et al. (2010) and Limoges et al. (2005) for a detailed account of the macro architecture and micro architecture of sleep in children and adults respectively6;10.
- Vriend, J.L. Corkum, P.V. Moon, E.C. Smith, I.M. Behavioral Interventions for sleep problems in children with autism spectrum disorders: Current findings and future directions. Journal of Pediatric Psychology 2011; 36(9):1017-1029
- Perogamvros, L. Dang-Vu, T. T. Desseilles, M. Schwartz, S. Sleep and dreaming are for important matters. Frontiers in Psychology 2013; 4(474) doi: 10.3389/fpsyg.2013.00474
- Maski, K.P. Kothare, S.V. Sleep deprivation and neurobehavioral functioning in children. International Journal of Psychophysiology 2013; 89:259-264
- Lam, P. Hiscock, H. Wake, M. Outcomes of infant sleep problems: A longitudinal study of sleep, behavior, and Maternal Well-Being. Pediatrics 2003; 111(3):203-207
- Martin, J. Hiscock, H. Hardy, P. Davey, B. Wake, M. Adverse associations of infant and child sleep problems and parent health: An Australian population study. Pediatrics 2007; 119(5):947-955
- Cortesi, F. Giannotti, F. Ivanenko, A. Johnson, K. Sleep in children with autistic spectrum disorder. Sleep Medicine 2010; 11:659-664
- Giannotti, F. Cortesi, F. Cerquiglini, A. Vagnoni, C. Valente, D. Sleep in children with autism with and without autistic regression. Journal of Sleep Research 2011; 20:338-347
- Miano, S. & Ferri, R. Epidemiology and management of insomnia in children with autistic spectrum disorders. Pediatric Drugs 2010; 12(2):75-84
- Moturi, S. & Avis, K. Assessment and treatment of common pediatric sleep disorders. Psychiatry 2010; 7(6):24-37
- Limoges, E. Mottron, L. Boldue, C. Berthiaume, C. Godbout, R. Atypical sleep architecture and the autism phenotype. Brain 2005; 128:1049-1061
- Matsuura, H. Tateno, K. Aou, S. Dynamical properties of the two-process model for sleep-wake cycles in infantile autism. Cognitive Neurodynamics 2008; 2:221-228
- Fisher, A. van Jaarsveld, C.H.M. Llewellyn, C.H. Wardle, J. Genetic and environmental influences on infant sleep. Pediatrics 2012; 129: 1091-1096
- Wang, M. & Saudino, K. J. Genetic and environmental contributions to stability and change of sleep problems in toddlerhood. Journal of Pediatric Psychology 2012; 37(6):697-706
- Meltzer, L.J. Brief Report: Sleep in parents of children with autism spectrum disorders. Journal of Pediatric Psychology 2008; 33(4):380-386
- Meltzer, L.J. & Montgomery-Downs, H.E. Sleep in the family. Pediatric Clinics of North America 2011; 58(3):765-774
- Hiscock, H. Bayer, J.K. Hampton, A. Ukoumunne, O.C. Wake, M. Long-term mother and child mental health effects of a population-based infant sleep intervention: Cluster-randomized, controlled trial. Pediatrics 2008; 122(3):621-627
- Wiggs, L. & France, K. Behavioural treatments for sleep problems in children and adolescents with physical illness, psychological problems or intellectual disabilities. Sleep Medicine Review 2000; 4(3):299-314
- Mindell, J.A. Telofski, L.S. Weigand, B. Kurtz, E.S. A nightly bedtime routine: Impact on sleep in young children and maternal mood. Sleep 2009; 32(5):599-606
- Hiscock, H. & Wake, M. Randomised controlled trial of behavioural infant sleep intervention to improve infant sleep and maternal mood. BMJ 2002; 324: 1-6
- Weiskop, S. Richdale, A. Matthews, J. Behavioural treatment to reduce sleep problems in children with autism or fragile X syndrome. Developmental Medicine & Child Neurology 2005; 47:94-104
- Blunden, S.L. Thompson, K.R. Dawson, D. Behavioural sleep treatments and night time crying in infants: Challenging the status quo. Sleep Medicine Review 2011; 15:327-334
- Sadeh, A. Mindell, J.A. Owens, J. Why care about sleep of infants and their parents? Sleep Medicine Reviews 2011; 15:335-337
- Price, A.M.H. Wake, M. Ukoumunne, O.C. Hiscock, H. Five-year follow-up of harms and benefits of behavioral infant sleep intervention: Randomized trial. Pediatrics 2012; 130(4):643-651