ASD and Sleep Problems and Family Resilience

Cristy Roberts, RN PhD

University of Missouri-Kansas City

robertscris@umkc.edu

Background

Children with ASD often have co-occurring health conditions including attention deficit, obsessive compulsive, digestive, seizure, and sleep disorders. Among these disorders, sleep problems affect up to 80% of children with ASD (Vriend, Corkum, Moon, & Smith, 2011).

While most of the current research on ASD has focused on the children’s issues, it is equally critical to understand the families’ issues of adapting and dealing with stress induced by the sleep problems.

Recent, Longitudinal Study on Sleep & ASD

Humphreys et al. (2013) Sleep patterns in children with autism spectrum disorders: A prospective study

British study, children studied from 6 mos. to 11 yrs.

These children slept 17-43 minutes less overall than the control children

No differences until about 30 months old. Day time sleep did not make a difference.

Children with ASD woke more frequently at night. Older children tend to stay in bed when awake at night.

Postulate: some kind of disturbance in the child’s biological clock (less melantonin & disrupted circadian rhythm)

Background

Sleep deprivation has many deleterious effects including decreased energy conservation, cognitive functioning, and ability to regulate emotions, especially mood.

Speculation that sleep loss may cause loss of neurons (brain cells)

(Jan et al., 2010, European Journal of Neurology)

Poorer parental sleep was found to be related to higher fatigue levels, higher anxiety and depression, and lower levels of activity in parents (Giallo, Wood, Jellett, & Porter, 2011).

Background

Research has established that children’s sleep problems were highly related to parental sleep disturbances and suggest further research on family functioning (Lopez-

Wagner, Hoffman, Sweeney, Hodge, & Gilliam, 2008).

Sleep

Children with ASD display sleep behaviors, such as screaming or increased motor activities, that frequently awaken their parents (Schreck & Mulick, 2000)

Parents’ sleep Poor parental sleep was related to higher

fatigue levels, higher anxiety and depression, and lower levels of activity in parents of children with ASD

(Giallo, Wood, Jellett, & Porter, 2011) The specific sleep problems that

accounted for the greatest variability in parental stress were daytime sleepiness and externalizing behaviors such as inattention and aggression

(Byars, Yeomans-Maldonado, & Noll, 2011)

Characteristics of ASD that may lead to sleep issues

Strict adherence to routine which can be a characteristic of autism often leads to difficulty with settling into sleep at night

(Cotton & Richdale, 2006)

Many autistic behaviors lead to insomnia and, bidirectionally, sleep impairment is related to greater repetitive behaviors, hyperactivity, and mood disorders

(Jeste, 2011)

Background

Strong positive correlations were demonstrated between disordered breathing during sleep and parasomnias (including restless leg syndrome and night terrors) to increases in autistic characteristics such as stereotyped behaviors and impaired social interactions

(Hoffman et al., 2005)

Age group comparisons

Young children show problems of bedtime resistance, anxiety, and disrupted sleeping throughout the night due to parasomnias (events that disrupt sleep; e.g. bruxism or sleepwalking)

Older children demonstrate more daytime sleepiness which may be a result of difficulty falling asleep and insufficient time to sleep (Goldman, Richdale, Clemons, & Malow, 2012).

Theories

Less sleep = more challenging behaviors (Owens, 2009)

Calming routines may lessen hyperarousal before bedtime

Disrupted sleep is associated with elevated morning cortisol levels leading to lessened ability to regulate behavior (Scher et al., 2010)

If more sleep can decrease repetitive behaviors and increase attention behaviors, children with ASD may find a greater benefit in therapies (Malow et al., 2013)

An additional result might be parents feel more competent which could increase their confidence in advocating for their children across different settings

Science

Rapid eye movement (REM) sleep (during which time a normal generalized paralysis occurs) is reduced in children with ASD, which increases the proportion of non-REM sleep and allows them to physically act out their dreams

(Reynolds & Malow, 2011)

Sleep and ASD (theories) Chromosome 15q, which has been

implicated in autism disorders, is also the site of GABA-related genes, neurotransmitters that promote sleep (Johnson, Giannotti, & Cortesi, 2009).

Evidence is accumulating that there is a pathophysiological basis to sleep disruptions for children with ASD including a gene disruption that may cause melatonin synthesis dysregulation (Jeste, 2011).

Nighttime movement

Objective measures of sleep problems, specifically actigraphy (a measure of sleep movement), does not always substantiate parental reports of persistent sleep issues (Goodlin-Jones et al., 2009; Hering, Epstein, Elroy, Iancu, & Zelnik, 1999; Schreck & Mulick, 2000).

It is speculated that parental stress could produce perceptions of sleep problems that appear greater than what is reasonable for young children.

Current Study

I am sending out two questionnaires to families of children between the ages of 4-12: the Family Index of Regenerativity and

Adaptation-General (FIRA-G)

the Children’s Sleep Habits Questionnaire (CSHQ)

These findings will be used to test the model of family resilience that predicts that family stress will negatively influence resilience initially and positively influence family adaptation over time.

Children’s Sleep Habits Questionnaire

When the CSHQ was used in sleep research, dimensions of sleep problems such as bedtime resistance,

delayed sleep onset,

decreased sleep duration,

increased sleep anxiety,

and the child’s total score

differed significantly among children:

o with ASD and sleep disorders,

o those with ASD and no sleep problems,

o and typically developing children

(Malow et al., 2006)

McCubbin & McCubbinThe Resiliency Model of Family Stress, Adjustment, and Adaptation

Resilience

Definitionability to withstand

difficulties recover from adverse events

The good news regarding parents of children with ASD

Gray (2002) found that many families demonstrated adaptation over time including lower levels of stress, less stigmatizing reactions from others, and improvements in psychological well-being

Over time, parents used less external supports such as reliance on health care providers and friends, and more emotion-focused coping strategies (Gray, 2006)

About mothers…

Mothers of children with ASD often redefine their personal needs by employing new coping mechanisms, such as minimizing the impact of other people’s opinions about their child and maximizing spousal support (Tunali & Power, 2002)

Journey toward Adaptation

Qualitative study of mothers of children with ASD (Lutz, Patterson, & Klein, 2012)

Mothers’ journey began with grief and then specific worries, and eventually moved to formulating plans that supported their child and family and becoming advocates for others

Interventions

Sleep problems in children with ASD do not seem to disappear over time without interventions (Sivertsen, Posserud, Gillberg, Lundervold, & Hysing, 2012)

Strategies to Improve Sleep in Children with

Autism Spectrum Disorders

PROVIDE A COMFORTABLE SLEEP SETTING

Bedroom should be comfortableRoom should be quietConsider the environment

ESTABLISH REGULAR BEDTIME HABITS

TEACH YOUR CHILD TO FALL ASLEEP ALONE

If your child cannot fall asleep alone, then each time he/she wakes up, it is hard to fall back asleep without your help.

ENCOURAGE BEHAVIORS THAT PROMOTE SLEEP Think about: Physical Activity

Caffeinated Foods & Beverages

What about my other children?

What if I have made changes but my child’s sleep has not improved?

http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/sleep-tool-kit

Research on Interventions

Adkins et al. (Vanderbilt, 2012, Pediatrics)

Parents were given the Autism Speaks pamphlet

Or not

Sample – children between ages of 2 and 10 With sleep latency (hard to fall asleep)

Wore actigraphy device (wrist watch or shoulder) to measure movement during sleep & CSHQ)

Could not have any other co-occurring problems like ADHD

Result: increased sleep efficiency not latency, but no other changes were significant

Parents would like to get specific ideas, not generalizations

Is sleep latency a characteristic of ASD, may resist changes in their routine

More Research on Interventions

Malow, Adkins, et al. (2013, Vanderbilt, Journal of Autism & Developmental Disorders)

Same demographics (2-10 y.o.), used actigraphy & CSHQ, no “untreated” co-occurring disorders

Intervention – either group or individual education format with same curriculum

Measured parents’ reports of QOL, child’s behavior

Improvement in both groups – significant for sleep latency, some improvement in sleep efficiency

Actigraphy did not show improvement in “wake times” but parents’ reports did

There is always a concern for bias based on “who” signs up for a program

Discussion

Thank you!