Attributions,causal beliefs,and help-seeking behavior of parents of children with autism spectrum disorder and sleep problems

Abstract

Sleep problems in children with autism spectrum disorder are prevalent and persistent but also treatable. Little is known about how and why parents of such children seek help for sleep disturbance. Via an online survey (n = 244 respondents), we gathered information about parents’ attributions about children’s sleep problems and beliefs about causes and on sources of information about, and their decisions regarding, help-seeking. Eighty-two percent of parents reported seeking some kind of help for their child’s sleep disturbance, and the average parent had tried six different treatment strategies, most commonly medical. Alignment of parents’ treatment choices with empirical evidence about treatment efficacy was poor, but belief in effectiveness was closely related to frequency of use of a treatment. In a Principal Components Analysis, parental attributions loaded on two factors: one which suggests the sleep problems are viewed as intrinsic to autism and stable (factor one) and the other as located within the child, stable, and treatment resistant (factor two). These findings have important implications for parental education and clinical practice in the treatment of sleep problems in children with autism spectrum disorder.

Lay abstract

Sleep problems are commonly reported among parents of children with autism spectrum disorder (ASD). Without effective treatment, such problems are unlikely to resolve. To date, we know very little about how and why parents of children with ASD seek help for sleep disturbance. Via an online survey, we gathered information about how parents make sense of their children’s sleep problems, beliefs about their causes, sources of information, and help-seeking behavior. The analysis of responses from 244 parents revealed that parents commonly view sleep problems (a) as a consequence of their child’s ASD, and unlikely to change over time (stable), and (b) as located within the child (intrinsic), stable over time, and difficult to treat. Despite this, parents also rated sleep problems as being important to treat. Eighty-two percent of parents surveyed reported seeking some kind of help for their child’s sleep disturbance, and the average parent had tried six different treatment strategies, most commonly medical approaches (e.g. melatonin). The alignment between parents’ treatment choices and those strategies that are supported by research was poor, but belief in the effectiveness of treatments was closely related to how often the treatment was used. These findings have important implications for parental education and clinical practice in the treatment of sleep problems in children with ASD.

Keywords

autism spectrum disorder help-seeking parent attributions parental beliefs seep sleep treatment

Sleep problems, including difficulty with sleep onset and maintenance, are highly prevalent among children with autism spectrum disorder (ASD), and without effective treatment, are unlikely to resolve over time (Corkum et al., 2014; Cortesi et al., 2010; Hodge et al., 2014). Sleep problems are thought to result from a combination of biopsychosocial etiologies (Cortesi et al., 2010; Melke et al., 2008; Reynolds & Malow, 2011; Richdale & Schreck, 2009), including neurotransmitter alterations that affect the production and synthesis of melatonin, medical conditions (e.g. nocturnal seizure activity, obstructive sleep apnea), psychological or psychiatric conditions (e.g. sleep-related anxiety), and behavioral factors, including poor sleep hygiene and parent–child interactions that reinforce and maintain sleep disturbance (Melke et al., 2008; Reynolds & Malow, 2011; Vriend et al., 2011). Sleep problems may be further compounded by the core behavioral symptoms of ASD such as difficulties with communication, transitions, emotional regulation, and repetitive and ritualistic behaviors, each of which may interfere with a child’s ability to prepare for and maintain sleep (Malow et al., 2014).

There is evidence from systematic reviews (see Carnett et al., 2019; Hollway & Aman, 2011; Turner & Johnson, 2013) for the efficacy of both physiological and environmental modifications in treating sleep problems in ASD in that the most common, empirically supported, treatments are either pharmacological (e.g. melatonin) and/or behavioral (e.g. extinction, graduated extinction, reinforcement, and faded bedtime) (Goodday et al., 2014; Owens et al., 2010; Wiggs & Stores, 1996; Williams et al., 2006). By contrast, there is a notable absence of research and/or limited empirical support for the use of non-pharmacological or non-behavioral approaches (e.g. exercise, homeopathy, weighted blankets) for treating ASD-related sleep problems in children (McLay & France, 2016). Interventions for sleep problems are predominantly implemented within the home setting with parents as the primary change agents, and as such, parents are consumers of information about sleep problems and treatments, select professional sources of help, and implement the chosen treatment(s).

Despite a large body of evidence to support the use of behavioral and/or pharmacological treatments for sleep problems, it does not automatically follow that these are the approaches that will be recommended by clinicians or selected and implemented by parents (Green et al., 2006; National Autism Center, 2009). In general, parents considering treatments for children with ASD are faced with the daunting task of navigating a plethora of options and recommendations, many of which are not evidence-based (Green et al., 2006; Odom et al., 2010; Whitehouse, 2013), and the treatment of sleep problems is no exception to this (McLay & France, 2016).

In addition to, or in place of, empirical evidence influencing parents’ help-seeking and treatment choices, there are likely to be a number of parental attributions and beliefs about causal factors pertaining to ASD that affect such choices, both for challenging behaviors in general and specifically for sleep problems. Research on parental attributions draws upon the cognition-emotion-action attributional model developed by Weiner (1980), wherein attributions can be categorized as child-referent attributions (beliefs about causes related to the child) and parent-referent attributions (beliefs about parents’ causal roles in the behavior) (Morrissey-Kane & Prinz, 1999) and include dimensions such as locus, stability, and controllability (Weiner, 1980). Locus refers to the belief that behavior is the result of characteristics either external or internal to the individual. Stability captures views on the permanency of the behavior; and controllability refers to beliefs about whether the behavior is under the control of the individual (Weiner, 1980).

Within this framework, research suggests that, in general, parents often attribute ASD-associated behavior problems (e.g. aggression, non-compliance, or tantrums) to characteristics that are internal (to the child) and stable (Dix & Lochman, 1990; Hartley et al., 2013; Johnston & Freeman, 1997; Woolfson et al., 2011) but not necessarily controllable, that is, the behavior problem is often viewed as a characteristic of ASD itself (Dix & Lochman, 1990; Johnston & Freeman, 1997; Johnston & Patenaude, 1994; Whittingham et al., 2008; Woolfson et al., 2011). In addition, any increase in the severity of such behavior problems is often associated with attributions of an internal locus of control, more stability, and less controllability (Hartley et al., 2013). These types of attributional biases about the factors underlying the cause of behavior problems across a wide range of domains can be problematic as they may impact both willingness to seek treatment and treatment selection (Dardennes et al., 2011; Howlin & Rutter, 1987). For instance, parents who consider ASD to be a stable and uncontrollable lifelong condition may decline to seek treatment or be more likely to seek out and rely on pharmacological treatment than are parents who see the behaviors characteristic of ASD as having learnt components (i.e. as being less stable and more controllable) (Al Anbar et al., 2010; Keenan et al., 2007).

To date, few studies have examined these issues as they may apply for children with ASD and comorbid sleep problems. Such research as exists suggests that parents often do not seek treatment for their child’s sleep problem and are less likely to identify sleep as problematic when compared with parents of typically developing children (Polimeni et al., 2005; Robinson & Richdale, 2004; Wiggs & Stores, 1996). Research also suggests that in the case of parents of children with developmental disabilities, they have a number of attributions about their child’s sleep, including the view that children grow out of sleep problems (Durand et al., 1996), that the sleep problem is an inevitable consequence of the developmental disability (Bramble, 1996; Stores, 1996), that it is untreatable/chronic, and that it is unlikely be responsive to treatment (Bessey et al., 2013; Keenan et al., 2007; McDougall et al., 2005; Robinson & Richdale, 2004).

Further research, therefore, is needed to establish what attributions parents hold about sleep problems in their children with ASD, their beliefs about the cause of these sleep problems, what sources of supports and treatments they access, and what if any trends are evident in sleep treatment selection (Goodday et al., 2014; Wilson et al., 2018). There is also a need to establish whether parental attributions and beliefs, help-seeking, and treatment choices reflect current knowledge pertaining to the cause and treatment of ASD-related sleep problems in children. More specifically, this includes beliefs about cause and attributions about the locus, controllability and stability of the sleep problem, and treatment use. Understanding attributions is critical in formulating appropriate interventions and supports (Dardennes et al., 2011) and in communicating assessment results and intervention plans to parents (Sanders & Burke, 2013). Also, parental attributions and beliefs about causes have implications not only for treatment use and implementation but also engagement with and adherence to treatment programs (Morrissey-Kane & Prinz, 1999).

This study, therefore, aimed to investigate (1) parental attributions about the locus, stability, and controllability of sleep problems in their child with ASD, (2) what parents believe are the cause(s) of their child’s sleep problems, and (3) what treatments parents select and how effective they perceive these treatments to be.

Method

Participants and recruitment

The survey (in English only) was distributed throughout New Zealand, the USA, and Australia to parents of children with ASD via the email lists and social media pages of ASD service providers and community organizations and through emails to the professional networks of the research team. Of 438 initial respondents, 244 met the following inclusion criteria: (a) they reported being a parent/caregiver of a child with a clinical diagnosis of ASD and (b) their child experienced some type of sleep problem. Those not meeting these criteria were automatically redirected to the exit screen.

Of 244 respondents, all identified that their child had a clinical diagnosis of ASD; 90% (n = 221) identified as mothers or primary female caregivers, and 9% (n = 21) were fathers or primary male caregivers. Two remaining respondents (< 1%) were grandparents. The majority (n = 187; 77%) were of European (in New Zealand, Pākehā) descent and the remainder of varying ethnicities, including Māori (n = 16; 7%), Asian (n = 11; 4.5%), and Pasifika (n = 4; 2%). Respondents predominantly (n = 191; 78%) indicated that they were in a heterosexual marriage with a family size of 2–4 (84%) and were either employed (n = 127; 52%) or homemakers (22%), reported an income of 50–100 + thousand dollars (n = 179; 73%), and two-thirds (n = 160) had a university degree. See Table 1 for a summary of demographic data.

Table 1.

Demographic characteristics of the sample.

Demographic data	N, percentage of total sample
Parent age
18–24	1, 0.4%
25–34	23, 9.4%
35–44	112, 46.0%
45–65	106, 44%
65 +	1, 0.4%
Relationship to the child
Mother	217, 89%
Father	19, 7.8%
Primary female caregiver	4, 1.6%
Primary male caregiver	2, 0.8%
Other	2, 0.08%
Ethnicity
New Zealand European/Pakeha	187, 77%
Maori	16, 6.6%
Asian	11, 4.8%
Other	26, 10.7%
Marital status
Single	17, 7%
Married	191 78.3%
Same sex marriage	2, 0.8%
Widowed	3, 1.2%
Divorced or separated	29, 12%
Family size
1	16, 6.6%
2	50, 20.5%
3	105, 43%
4 +	72, 30%
Employment
Employed	127, 52%
Self-employed	30, 12.3%
Not currently working or homemaker	60, 25%
Student	9, 3.7%
Retired	3, 1.2%
Unable to work	15, 6.1%

Procedure

The relevant university ethics committee gave ethical approval for this study. Participants were recruited using snowball sampling in which an initial email was sent to professional organizations and service providers for children and young people with ASD and their parents and the professional networks of the international research team, with a request to send survey information to parents of children with ASD. The email included a copy of information about the survey, an electronic survey link, and an invitation for email recipients to disseminate the survey to parents of children with ASD within their own networks.

Survey instrument

The survey was managed using Qualtrics (www.qualtrics.com). Page one included information about the study including verification that data would be de-identified, and required respondents to consent to participation. Then participants responded by selecting from a list of options, by providing a brief statement or description (e.g. stating how long it took their child to fall asleep during sleep onset), or by responding using Likert-type scale ratings. A copy of the sleep questionnaire is available from the authors upon request.

Participants were asked to select the types of sleep problem from a list of seven insomnias, five parasomnias, five types of circadian rhythm disturbances, and/or to name any that were unlisted. They were then asked to rate the frequency, duration and/or timing of the sleep problem, as well as selecting examples of sleep interfering behaviors (e.g. vocal or motor stereotypy, calling out, bedtime resistance). This was used to provide an indication of the severity of the sleep problem.

Information about parental attributions about the sleep problem were obtained via eight items using five-point Likert-type scale ratings specifying the extent to which the sleep problem was of concern (1 = not at all; 5 = primary and most significant concern) and via six point Likert-type scale ratings of the extent to which parents agreed with the following attributional statements about their children: the sleep problem is a feature of my child’s diagnosis (locus); is a part of who they are (i.e. it’s just the way they are) (locus); is intentional (controllability); is unlikely to change (stability); my child should be responsible for managing their own sleep and sleep-related behavior (controllability); my child’s sleep problems are outside of their control (controllability); and my child is capable of learning to sleep better with the right support (controllability). Respondents were also asked to indicate on a five-point Likert-type scale the extent to which they believed their child’s sleep problem would resolve without treatment (1 = definitely yes; 5 = definitely not; stability). Furthermore, 19 questions specifically focused on the beliefs about putative causes of the child’s sleep problem (Coded 0 = not a cause; 1 = cause). These causes were categorized at a high-level according to whether they were medical (i.e. related to the medical conditions previously noted), sensory (e.g. sensitivity to noise levels), or related to poor sleep hygiene (e.g. inconsistent bedtime) or whether the parents considered them to be learned or acquired sleep problems that interfere with falling asleep or staying asleep (e.g. child is seeking parental attention). Endorsement of one of these causes led to questions as to specific aspects of each putative cause; for example, if they selected sensory cause, then they were asked to indicate whether they believed it to be sensitivity to bedroom temperature, light in the bedroom, noise level, bedding, or other.

For the purpose of this study, help-seeking behavior was determined by asking parents to respond to questions about sources of information and help and treatments previously tried. Data on sources of information and help were collected by asking parents to select from a list of 13 possible sources, including professional help as well as self-directed learning options (e.g. other parents, books, and websites). Information about treatment use for the child’s sleep problem was obtained by asking parents to indicate whether they had ever used an intervention to treat the sleep problem, whether their child was on sleep medication and what this was, and any treatments that they had previously tried or were currently trying for the sleep problem. Treatment options were identified from a list of 13 items with space to name other treatments and to rate the effectiveness of these treatments on a five-point Likert-type scale (1 = ineffective; 5 = resolved the sleep problem). Options included unconventional treatments (e.g. homeopathy), behavioral strategies (e.g. systematic ignoring), and pharmacological approaches (e.g. prescribed medication).

Treatments reported by parents were subsequently classified as empirically supported or non-supported. This classification was based on relevant research (e.g. McLay & France, 2016; Rossignol & Frye, 2011; Turner & Johnson, 2013). The level of empirical support for each treatment when used with children with ASD and sleep disturbance is summarized in Table 2.

Table 2.

Practices used by parents, ratings of effectiveness, and level of empirical support in children with ASD and sleep disturbance.

Source of information	Have used		Rated as effective		Level of empirical support
	N	%	n	%	Level of empirical support
Prescription medication	167	68	150	90	Supported
Exercise	150	62	111	74	Unsupported
Co-sleeping	142	58	113	80	Unsupported
Homeopathic	139	57	71	51	Unsupported
Systematic ignoring	139	57	44	18	Supported
Bedtime fading	115	47	64	56	Supported
Modified systematic ignoring	115	47	45	18	Supported
Social stories	113	46	38	34	Some support
White noise	103	42	58	56	Some support
Weighted blanket	103	42	69	67	Unsupported
Scheduled awakening	42	35	42	31	Supported
Video modeling	31	17	7	22	Unsupported

Data analysis

For the purpose of this study, we analyzed data pertaining to parental attributions about their child’s sleep problems and beliefs about their cause, sources of sleep intervention information and help, previous treatment practices and perceptions of their efficacy, and the relationship between sources of help and implemented treatments, using the Statistical Package for Social Sciences (SPSS), version 25, and Jamovi, version 09.6.10. Graphs were drawn using Sigma Plot v 14.0. Basic descriptive statistics (i.e. means, standard deviations, frequency) on participant demographic factors were computed, as were responses to questions about previous treatments and types of professionals parents had accessed for sleep problems and perceptions about their efficacy and the nature of the sleep problem.

Following analysis of demographic information, we analyzed parental attributions about the nature of sleep problems and their beliefs about causes of the sleep problems both descriptively (e.g. frequency counts; correlations) and using a principal components analysis (PCA) with Promax rotation (Watkins, 2018). Promax rotation was used because it was considered likely that beliefs would be correlated. Then we considered help-seeking and treatment choices and perceptions of efficacy.

Results

Findings are reported below in order determined by the data analysis strategy outlined above.

Parent attributions about sleep problems

With respect to parents’ attributions about their child’s sleep problem, the majority attributed their child’s sleep problem to factors inherent to their child. Specifically, parents reported sleep problems were a function of the child’s diagnosis (79%), a part of who their child was (79%), and outside of their child’s control (69%). Parents rarely viewed the sleep problem as being controllable with only 7% perceiving the problem as intentional and 13% holding the view that their child was responsible for their own sleep. Nonetheless, despite these attributions, a majority of parents (by a modest margin) believed that the sleep problem was treatable and should be treated, in that 53% of parents reported that they believed their child’s sleep problems could be improved if given the right support, and 56% indicated that it was important to treat their child’s sleep problem.

The eight items relating to parental attributions about sleep problems in children with ASD were designed to tap beliefs representing problem locus, stability, and controllability. The PCA examined whether or not this belief structure was revealed in a set of consistent factors in the data. Overall response to the eight items is shown in Table 3.

Table 3.

Mean and median parent ratings of agreement with beliefs about sleep problems.

	Feature of diagnosis (A)	Part of who they are (B)	Intentional (C)	Unlikely to change (D)	Child can manage own sleep problem (E)	Outside child’s control (F)	Can learn to sleep better (G)	Unlikely to resolve without treatment (H)
N	241	243	240	243	244	244	244	243
Missing	3	1	4	1	0	0	0	1
Mean	4.02	3.43	1.75	3.21	2.28	3.76	3.35	3.56
Median	4	4	1.50	3	2.00	4.00	4.00	4
Minimum	0	0	0	0	0	0	0	1
Maximum	5	5	5	5	5	5	5	5

Items A—G were 6-point Likert-type scales; Item H a 5-point scale. Higher scores = stronger agreement.

Parents agreed strongly to very strongly that their child’s sleep problems were an intrinsic feature of their diagnosis (A), that the sleep problems were part of who they (children) are (B), that the sleep problems were unlikely to change (D), that the sleep problems were outside of the child’s control (F), and agreed that the sleep problems were unlikely to resolve without treatment (H), but also agreed that children could learn to sleep better with the right support (G). They tended to disagree that the child was responsible for managing their own sleep and associated problems (E). They did not agree that the sleep problems were intentional (C). Correlations among attributions (interpreted where ⩾0.2 and statistically significant, p ⩽ 0.05; Cohen, 1988; Hemphill, 2003) were mostly small (range 0.22–0.27) but with two moderate correlations (~0.4) and were all positive (see Table 4).

Table 4.

Correlation matrix (Pearson’s r) showing correlations among parental attributions about sleep problems.

		Feature of diagnosis (A)	Part of who they are (B)	Intentional (C)	Unlikely to change (D)	Child can manage own sleep problem (E)	Outside child’s control (F)	Can learn to sleep better (G)	Unlikely to resolve without treatment (H)
A	Pearson’s r	—
	p-value	—
B	Pearson’s r	0.405 ***	—
	p-value	<0.001	—
C	Pearson’s r	−0.057	0.122	—
	p-value	0.385	0.060	—
D	Pearson’s r	0.222 ***	0.223 ***	0.118	—
	p-value	<0.001	<0.001	0.069	—
E	Pearson’s r	−0.066	0.083	0.217 ***	0.154*	—
	p-value	0.311	0.197	<0.001	0.016	—
F	Pearson’s r	0.263 ***	0.218 ***	−0.127*	0.397 ***	−0.151*	—
	p-value	<0.001	<0.001	0.049	<0.001	0.019	—
G	Pearson’s r	0.096	0.035	0.155*	−0.098	0.288 ***	−0.135*	—
	p-value	0.138	0.582	0.016	0.128	<0.001	0.035	—
H	Pearson’s r	0.227 ***	−0.039	−0.183**	0.163*	−0.025	0.189**	−0.125	—
	p-value	<0.001	0.545	0.004	0.011	0.702	0.003	0.051	—

Correlations ⩾0.2 in bold.

p < 0.05; ** p < 0.01; *** p < 0.001.

The correlations shown in Table 4 are marginal for PCA; however, Barlett’s Test of Sphericity was statistically significant (p < 0.001), and the Kaiser–Meyer–Olkin (KMO) Measure of Sampling Adequacy (0.54) was judged marginal but adequate for exploratory PCA to proceed (Watkins, 2018). PCA component loadings are shown in Table 5. Two factors accounting for 43% of the variance (VAC) are evident as determined by parallel analysis and Scree plot. Rather than revealing three factors, namely beliefs that problems are intrinsic to ASD, stable, and controllable, the PCA suggests that the two factors are a blend of these beliefs, with Factor A (22.5% VAC) judged to represent a belief structure where the sleep problems are intrinsic to the condition and stable and Factor B (20.4% VAC), a belief that the sleep problems are located in the child, stable, and change (or treatment) resistant.

Table 5.

Principal component loadings for parental attributions about sleep problems.

	Component		Uniqueness
	Intrinsic + stable (A)	Located in the child, stable + treatment resistant (B)
Feature of diagnosis	0.666		0.552
Part of who they are	0.700		0.503
Intentional		0.655	0.585
Unlikely to change	0.688		0.539
Child can manage own sleep problem		0.683	0.550
Outside child’s control	0.539	−0.408	0.461
Can learn to sleep better		0.592	0.644
Unlikely to resolve without treatment		−0.382	0.740

Promax rotation was used.

Beliefs about causes of sleep problems

Nineteen items in the questionnaire asked parents about their beliefs as to putative causes of their child’s sleep problems. Four non-exclusive items asked about higher-order causes, only two of which were endorsed by a majority of parents as likely causes. These were medical conditions (59%) and sensory problems (61%). The other two general causes were endorsed by only a minority; these were that the sleep problem was learned/acquired (31%) and poor sleep hygiene (15%). Those parents who agreed that any of three of the higher-order causes (sensory problems, learned/acquired, and sleep hygiene) were causes of their child’s problems were then asked to endorse some further items relating to each category. Of the 149 respondents identifying sensory problems as causes, 63% identified bedroom noise, 54% bedroom light, 37.5% issues with bedding, and 30% bedroom temperature. Of the 75 respondents agreeing that the sleep problems were learned/acquired, 56% agreed that their child did not want to be left alone, 51%, that the child was attention-seeking, 36%, that the child was seeking access to preferred activities and toys, and 35%, that they were avoidant of bedtime, but only 16% related problems to the child needing a comfort item such as a pacifier; 36% endorsed “other” unspecified as a cause. Only 37 parents endorsed sleep hygiene factors as causes of sleep problems, but of these, an overwhelming 92% agreed that use of digital devices was a contributory cause. Inconsistent bedtime routines (27%) and inconsistent bedtime (16%) were endorsed by fewer parents.

Parental help-seeking and treatment choices

With regard to sources of sleep intervention information, the majority (82%) of parents reported seeking some form of help for their child’s sleep problem(s), and most had sought help from two sources (Sources: M = 1.88, Range 0–8). Medical professionals (57%) were the most common source of advice/help, with psychologists (19%), web-based resources (19%), books (18%), and other parents (17%) drawn upon relatively infrequently. Very few parents reported working with a Board Certified Behavior Analyst (BCBA) or teacher or other class of professional (see Table 6 for a complete list of sources of help).

Table 6.

Sources of information about child sleep problems.

Source of information	n	%
Medical professional	139	57
Psychologist	47	19
Web-based supports	47	19
Books	43	18
Other parents	41	17
Occupational therapist	29	12
BCBA	15	6
Teacher	7	3
Speech language pathologist	5	2
Researcher	5	2
Physical therapist	2	1
Other	44	18
No support	121	18

BCBA: Board Certified Behavior Analyst.

Table 2 summarizes information about treatments tried and perceptions of efficacy. A majority of the 244 respondents (67%) had tried some kind of sleep intervention on multiple occasions, and on average, parents reported having tried six different treatment strategies (M = 5.9, Range 0–13), most commonly, prescription medication (68%). Empirically unsupported practices such as exercise (62%), co-sleeping (58%), homeopathic remedies (57%), and weighted blankets (42%) were also used frequently. While some parents did report using practices that had some empirical support such as bedtime fading (47%) or social stories (46%), many well-supported practices such as behavioral extinction were reportedly used infrequently.

Parental users of the various treatments rated a mix of evidence-based and unsupported practices as being most effective. For example, 89% of parents who had tried prescription medicines found them to be effective, while co-sleeping (80%), exercise (74%), white noise (54%), and weighted blankets (67%) were also some of the highest rated practices, in spite of the fact that they are not classified as empirically supported. Treatments which have strong empirical support were rated as relatively less effective by those parents who had tried them. As an example, scheduled awakening was rated as effective by only 31% of participants who had tried it, and systematic ignoring and modified systematic ignoring were also rated as effective by few participants (18% for both).

As demonstrated in Figure 1, there is a strong relationship between previous use of a treatment practice and ratings of its efficacy. For example, medication has been used frequently and has high ratings of perceived effectiveness. By contrast, video modeling has been used infrequently and has low ratings of perceived effectiveness. Furthermore, it is evident that many practices that are unsupported by empirical evidence have been used frequently and have high parental ratings of perceived effectiveness (e.g. homeopathy, co-sleeping, and exercise), while many empirically supported practices (e.g. systematic ignoring and modified systematic ignoring) had much lower ratings of perceived effectiveness relative to previous use. In some cases perceived effectiveness exceeded previous experience with use of those strategies (e.g. weighted blankets, and white noise).

Figure 1.

The relationship between the percentage of parents who have used a practice, beliefs about effectiveness, and the level of empirical support.

Discussion

This study explored parental attributions about the nature of sleep problems in their child with ASD, their beliefs about the cause of these sleep problems, sources of information about the nature and treatment of sleep problems, the treatments that parents select, and how effective they perceive these treatments to be. Parents typically saw sleep problems as intrinsic to the diagnosis of ASD, having a locus internal to their child, stable, and change/treatment resistant. Somewhat contradictorily, parents did agree about the importance of getting treatment. Few parents saw a role for learning processes or sleep hygiene in their children’s acquisition of sleep problems, with the majority believing that sleep problems were caused by medical or sensory factors. Medical professionals were the most frequently reported source of information, and most parents sought treatment, many on multiple occasions, and they accessed a variety of evidence-based and non-evidence–based practices. Parents’ ratings of treatment effectiveness were correlated with frequency of use but largely unrelated to empirical evidence of effectiveness. These findings have many important implications for parents’ treatment seeking and use, engagement with professionals, and adherence to treatment programs and, equally, may inform professionals as they provide advice and services to families.

Most parents made condition- and child-referent attributions about their child’s sleep problem (Morrissey-Kane & Prinz, 1999), that is, they believed that it was a function of their child’s ASD diagnosis and/or was caused by sensory or medical factors. By contrast, only a minority of parents viewed the sleep problem as being a learned problem and/or a consequence of sleep hygiene practices, thus minimizing their own role and the potential for viewing the sleep problem as something their child had learned. This aligns with the commonly held attribution that sleep problems are outside of a child’s control and an inevitable outcome of their condition (Bramble, 1996; Stores, 1996). While there is evidence to support the belief that sleep problems can be underpinned by biological and medical factors (Cortesi et al., 2010; Melke et al., 2008; Reynolds & Malow, 2011; Richdale & Schreck, 2009), there is little systematic evidence suggesting that sensory factors such as bedroom light, noise, and temperature play a major role in causing and maintaining sleep problems at clinical levels of severity. By contrast, environmental and behavioral factors are strongly related to sleep problems in typically developing children and to a slightly lesser extent in children with ASD, but these were largely overlooked as possible causes. This is consistent with previous research, which indicates that independent of any diagnostic status, challenging behaviors in children, including sleep problems, are often misattributed to stable and dispositional factors internal to the child (Compas et al., 1982; Durand et al., 1996) and that when behavior is negative in nature, parents often view that behavior as a function of child, as opposed to parent, factors (Morrissey-Kane & Prinz, 1999). One notable finding, however, is that if parents endorsed a sleep hygiene factor as a cause of their child sleep problems, almost all considered the use of digital devices problematic. This concurs with clinical experience (van Deurs et al., 2019).

Despite a majority of parents rating sleep problems as being the result of stable, change/treatment resistant factors, parents rated highly the importance of obtaining treatment. This contradictory set of parental beliefs is likely to indicate ambivalence and, perhaps, hope or optimism, as well as a lack of knowledge about or access to effective treatment options. Nonetheless, of the 244 respondents, the majority reported accessing some type of help and had sought to treat their child’s sleep problem. Parents drew from multiple sources (up to 8) of information and professional help, with the overwhelming majority indicating that they drew upon the expertise of medical professionals. Parents were, however, relatively less likely to seek input from a psychologist or BCBA and would draw upon web-based sources, books, or other parents with equal frequency. The average parent surveyed had tried at least six strategies to treat their child’s sleep problem, the most common being medication.

Beyond medication, parents were equally likely to select treatments with (e.g. systematic ignoring) and without (e.g. homeopathy, weighted blankets) an evidence base. Furthermore, many strategies with an evidence base, such as modified systematic ignoring, were reported as being scarcely used. These observations may reflect parents’ comfort with physiological explanations and their discounting of the role of learning in sleep problems. However, these attributions, in turn, may also be shaped by parents’ difficulties in sourcing practitioners skilled and knowledgeable in behavioral treatment of sleep problems, as well as the resources and expertise to allow them to be supported throughout their use of technical and time-consuming interventions. This disconnect between what parents choose as treatments and their beliefs about the effectiveness of them versus what researchers have reported about effectiveness is puzzling. It may, of course, represent a failure of generality with respect to the research, such that parents using a treatment reported to be non-effective may have actually observed that it worked for their child, while the reverse is also possible. The so-called “replication crisis” in psychology and health research (Pashler & Wagenmakers, 2012) warns us to be cautious about claims of treatment efficacy unless there has been clear replication success. Alternatively, parent beliefs about treatments may reflect cognitive dissonance reduction (Cooper, 2007), in which the discrepancy between the effort, time, and cost invested in a treatment and the lack of any substantial direct effect may be resolved by adopting a more global, less directly empirical belief about the treatment’s effects. For example, a parent who observes that a treatment makes no apparent difference to some aspect of problematic sleep, such as time taken to fall asleep, may choose to judge that the child is “happier” following treatment. This possibility warrants investigation.

The finding that parents are proactively seeking information and professional help is promising. This finding is in contrast to previous research which, in general, suggests that parents rarely seek treatment for sleep problems, that sleep problems are viewed as untreatable, or that the child will outgrow the sleep problem (Durand et al., 1996; Polimeni et al., 2005; Robinson & Richdale, 2004; Wiggs & Stores, 1996). Perhaps less positively, current findings suggest that parents are not reliably accessing evidence-based treatments for child sleep problems. Both medical and behavioral approaches are empirically supported (Gringras et al., 2012; Rossignol & Frye, 2011; Turner & Johnson, 2013; Vriend et al., 2011); however, it appears that parents predominantly approach medical professionals in seeking help and sleep problems continue to be primarily treated using medication or strategies that are not empirically supported. Empirically supported behavioral approaches by contrast are scarcely used and are rated as ineffective. The high rate of failure in the use of approaches which have strong empirical support and high social validity brings into question again whether parents are receiving appropriate information and adequate help and guidance in treatment selection and use.

These findings have a number of important implications. While behavioral approaches are often considered the first-line of treatment for pediatric sleep problems in typically developing children (Mindell et al., 2006), with more limited evidence supporting their use with children having a range of diagnoses, this is not manifest in clinical practice. Given parental attributions about sleep problems, the discrepancy between research evidence and parental practices, and the rise in pseudoscientific practices (Smith, 2008; Travers et al., 2016), parental attributions about sleep problems and beliefs about their cause should be explored during any assessment process for sleep (and other) problems (Sanders & Burke, 2013), including functional assessment (Blampied, 2013), and if necessary, parental psychoeducation may be required in order to shift perceptions about their role in the manifestation and treatment of sleep problems. Equally, it is likely that professionals in a range of areas require further education and training in the use of behaviorally based treatments so that they feel competent in making appropriate recommendations and supporting appropriate interventions

Limitations

The main limitation of this study is that respondents were a largely homogeneous group, as evidenced by the lack of variability in demographic attributes, (high) educational attainment, and all English speakers. The sample size is robust, but the use of snowball recruitment means the researchers had less control of the survey and were unable to ensure that the sample was representative of all parents of children with ASD. This also meant that it was not possible to calculate the rate of response. In addition, there was no control group surveyed meaning that these findings are unable to be compared with data obtained from parents of children who do not have ASD. The generalizability of the findings is also limited by the fact that 84% of respondents were New Zealand based; findings may not apply internationally. It is also important to note that owing to an error in the setup of the survey, the question relating to child age was not visible to some respondents meaning that this was not able to be examined. Questions validating children’s ASD diagnoses or designed to acquire information about comorbid conditions (e.g. attention deficit hyperactivity disorder, intellectual disability) were also omitted. Finally, while seeking help from professionals and web-based sources was associated with use of a variety of treatments, we cannot conclude that these professionals recommended these treatments, supported their use appropriately (or inappropriately), and/or predicted the success of these approaches.

Future research

This study has identified a number of areas worthy of further investigation. First, researchers might further explore the role of parent attributions in treatment engagement and outcomes, particularly given the general endorsement that sleep problems are intrinsic to the diagnosis and located in the child. Second, it is important that we better understand the barriers to accessing evidence-based behavioral treatments and take steps to ameliorate these barriers, especially given that clinical practice guidelines indicate that behavioral interventions are recommended as the first line of treatment for pediatric sleep problems (Mindell et al., 2006), a fact seemingly not reflected in clinical practice. It may be that practitioners are not aware of these guidelines, are not skilled and confident in following them, do not have the time resources to do so, cannot access relevant professional development, or that there are other barriers such as cost, family time, and energy resources or location of services which hold sway. Third, parents rated a number of treatment practices without any empirical support as being effective. For such practices, where there is a putative, defensible mechanism accounting for how these interventions might be effective, there is some rationale for more thoroughly evaluating these commonly utilized strategies. Fourth, it would be extremely useful to know what recommendations are being made by professionals in the field and whether interventions supported by professionals were more successful, but this was not gathered by the current study. A matching survey of professionals might well be timely. Finally, longitudinal data should be collected to examine the process and effects of modifying beliefs and the stability of causal beliefs over time.

Footnotes

Declaration of conflicting interests

The author(s) report no conflicts of interests and are solely responsible for the content and writing of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: this research was supported by funding from the Health Research Council, New Zealand (grant number 17/582).

ORCID iDs

Laurie McLay

Sarah G Hansen

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