1. ASD and Sleep Problems and Family Resilience Cristy Roberts, RN PhD University of Missouri-Kansas City robertscris@umkc.edu

2. 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.

3. 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)

4. 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).

5. 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).

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

7. 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)

8. 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)

9. 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)

10. 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).

11. 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

12. 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)

13. 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).

14. 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.

15. 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.

16. 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)

17. McCubbin & McCubbin The Resiliency Model of Family Stress, Adjustment, and Adaptation

18. Resilience Definition ability to withstand difficulties recover from adverse events

19. 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)

20. 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)

21. 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

22. 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

23. PROVIDE A COMFORTABLE SLEEP SETTING  Bedroom should be comfortable  Room should be quiet  Consider the environment

24. ESTABLISH REGULAR BEDTIME HABITS

25. 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.

26. 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

27. 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

28. 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

29. Discussion Thank you!