Research in Autism Spectrum Disorders 5 (2011) 13781384

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Research in Autism Spectrum Disorders

Journal homepage: http://ees.elsevier.com/RASD/default.asp

Hope and worry in mothers of children with an autism spectrum disorder or Down syndrome
Paula L. Ogston a,*, Virginia H. Mackintosh a,b, Barbara J. Myers a
a b

Virginia Commonwealth University, Department of Psychology, 808 W. Franklin St., 23284, Richmond, VA 23225, USA University of Mary Washington, Department of Psychology, Fredericksburg, VA 22401, USA

A R T I C L E I N F O

A B S T R A C T

Article history: Received 17 January 2011 Received in revised form 19 January 2011 Accepted 19 January 2011 Available online 25 February 2011 Keywords: Hope Worry Mothers Autism spectrum disorder Down syndrome

Mothers of children with an autism spectrum disorder (n = 199) or Down syndrome (n = 60) responded to an online questionnaire that assessed their hope and worry. Findings support previous research suggesting that hope is a protective factor against psychological distress: mothers with higher hope reported lower worry. Mothers who reported lower worry had more education and older children or children who were higher functioning. Those whose children had Down syndrome reported lower future-related worry and higher hope. In response to an open-ended question regarding what they worried about when they woke up at night, mothers responses resulted in themes related to themselves as well as to their children and families. 2011 Elsevier Ltd. All rights reserved.

1. Introduction 1.1. Background Mothers of children with developmental disabilities face risks to their own health and psychosocial adjustment (Bebko, Konstantareas, & Springer, 1987; Dale, Jahoda, & Knott, 2007; Duarte, Bordin, Yazigi, & Mooney, 2005) and experience heightened levels of stress (Baker-Ericzen, Brookman-Frazee, & Stahmer, 2005; Hastings et al., 2005; Weiss, 2002) in comparison with parents of typically developing children. Parents of children with autism experience higher levels of stress than parents of children with Down syndrome and intellectual disabilities (Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001; Hastings et al., 2005). There are several explanations for this discrepancy. Individuals on the autism spectrum comprise a heterogeneous group, which creates challenges for both parents and professionals. Early on, doctors may be unresponsive to parents concerns regarding the development of their children (Dale et al., 2007) and it can take months or years to obtain a diagnosis (Goin-Kochel & Myers, 2005). Meanwhile, the variability in symptoms displayed by those on the autism spectrum precludes a standardized treatment plan (Dale et al., 2007). Parents face the responsibility of utilizing services and obtaining appropriate treatment for their child, despite the absence of a clear guide to the types and quantity of therapies that would be most benecial. In addition, there is no clearly dened prognosis for children with autism, which creates challenges in terms of planning for the future (Weiss, 2002). These uncertainties are stressful for parents (Erguner-Tekinalp & Akkok, 2004; Weiss, 2002). In contrast, Down syndrome is typically identiable at birth based on physical traits and diagnosis can be conrmed through genetic testing.

* Corresponding author. Tel.: +1 517 420 1289. E-mail addresses: ogstonpl@vcu.edu, ogstonpl@vcu.edu (P.L. Ogston), vmackint@umw.edu (V.H. Mackintosh), bmyers@vcu.edu (B.J. Myers). 1750-9467/$ see front matter 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.rasd.2011.01.020

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1.2. Hope Hope theory regards people as goal-oriented and is rooted in ones belief in the ability to accomplish future goals. Hope is described in terms of cognition and is comprised of two components: agency is the perceived ability to accomplish a goal, and pathways refer to the perception of being able to nd ways of meeting goals (Snyder, 2002). Higher hope is associated with a variety of positive psychosocial and health outcomes, including adaptive coping and lower levels of depression and anxiety (Snyder, 2000, 2002). As such, hope is important for parents who have a child with a disability. These parents are faced with the demands of maintaining their childs intervention schedules and nancing their childs care (Baker-Ericzen et al., 2005). This requires considerable motivation on the part of the parents and the ability to nd ways of meeting their childs needs, both of which are related to hopes fundamental characteristics (Horton & Wallander, 2001; Snyder et al., 1991). A small number of studies have examined hope as a correlate of the psychological functioning of parents of children with special needs. In Lloyd and Hastings (2009), hope was found to be a resilience factor for the psychological wellbeing of mothers of children with intellectual disability, including autism and Down syndrome. Hope also was shown to be a protective factor against psychological distress in mothers of children with diabetes: mothers with higher hope had lower levels of anxiety (Mednick et al., 2007). While autism and diabetes are very different disorders, they are both lifelong illnesses with no known cure. Therefore, these ndings may inform similar research done with parents of children with autism. 1.3. Worry Worry is a cognitive process dened as a chain of thoughts and images, negatively affect-laden and relatively uncontrollable (Borkovec, Robinson, Pruzinsky, & DePree, 1983). Fortunately, a moderate level of worry may aid in problem solving (Borkovec et al., 1983; Davey & Tallis, 1994) and has been found to be associated with preparation for action, decision-making, and adaptive levels of motivation (Floyd, Gareld, & LaSota, 2005). However, when it is excessive, worry becomes pathological and is associated with anxiety (Davey & Tallis, 1994). Researchers have explored parental worry in relation to a variety of special health care needs. One study examined worry in mothers of survivors of childhood cancer and found that mothers worry about their childs cancer was related to worry about their childs psychosocial adjustment (Zebrack, Chesler, Orbuch, & Parry, 2002). In a study of mothers worry regarding the health of their NICU-hospitalized infants, better-educated mothers worried less, and the infants diagnosis did not predict mothers level of worry (Docherty, Shandor Miles, & Holditch-Davis, 2002). Parents of children with disabilities report a variety of future-related worries (Heiman, 2002), including concerns for their childs nancial situation, physical independence, education, and future employment. All parents face great responsibility in caring for their children, but this responsibility is heightened for parents who have a child with a disability. These additional demands require a great deal of time and energy, which may contribute to worry laden thoughts. For parents of children with an autism spectrum disorder or Down syndrome, excessive worry may be an obstacle to responding not only to the needs of their child with a disability, but also to their other children, their marriages, work lives, and personal needs. Therefore, it is important to further understand the experience of hope and worry in mothers of children with disabilities. The primary aim of the study was to examine the relationship between hope and worry in these mothers, with respect to several child and parent factors. We hypothesized that mothers of children with autism would have lower hope and higher worry than mothers of children with Down syndrome, and that mothers of more severely affected children would show a similar picture of lower hope and greater worry. A secondary aim was to identify the topics of worry for mothers of children with an autism spectrum disorder or Down syndrome. 2. Methods 2.1. Participants Two hundred and fty-nine mothers of children (77.6% males; range: 121 years; M age 8.7 y, SD = 4.7) with an autism spectrum disorder (n = 199, autism [n = 130], Asperger syndrome [n = 32], PDD-NOS [n = 37]) or Down syndrome (n = 60) participated in this study. The mothers mean age was 39.1 years (SD = 7.6; range: 2360 years) and their mean education was 15.7 years (SD = 2.6), where 16 years is a bachelors degree. Participants were primarily white (89%), married or partnered (87%), and middle to upper income: 54.1% reported a family income of more than $70,000. Prior to analyses, 23 participants were removed from the dataset due to missing data. Many of these 23 participants neglected to ll out either the demographic information or the scales that assessed the constructs of interest; therefore, it was not possible to assess whether they differed from participants whose data were included in the analyses. 2.2. Procedure Participants were recruited via notices placed with websites and newsletters of both autism spectrum disorder and Down syndrome organizations, which directed them to an online questionnaire. Families were directed to the website and

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answered the questionnaire from their own computers. Submission of the completed questionnaire constituted consent. The variables examined in this paper comprise a subset of that larger survey. No identifying information was collected, which ensured anonymity and condentiality of responses. Participants received no payment or other benets. Data were collected between July of 2006 and February of 2007. This study was approved by the universitys Institutional Review Board. 2.3. Measures 2.3.1. Child and parent information Mothers provided childrens demographics: age, sex, race, primary diagnosis, and additional diagnosis. Parent demographics included age, sex, race, family income, years of education, and relationship to the child. 2.3.2. The State Hope Scale (Snyder et al., 1996) This scale assesses an individuals level of hope. It consists of 6 items and responses were provided on an 8-point Likert scale ranging from 1 (denitely false) to 8 (denitely true). A sample Agency question is, At the present time, I am energetically pursuing my goals, and a sample Pathways question is, There are lots of ways around any problem that I am facing now. Cronbachs alpha ranged from .82 to .95 on a standardization sample (Snyder et al., 1996); internal consistency for this sample was a = .91. 2.3.3. The Penn State Worry Questionnaire (PSWQ; Meyer, Miller, Metzger, & Borkovec, 1990) This questionnaire is a measure of trait worry. The measure was modied slightly from its original version; responses were provided on a 3-point Likert scale ranging from 1 (not at all typical) to 3 (very typical) instead of a 5-point Likert scale. A sample item is, If I dont have enough time to do everything, I dont worry about it. Cronbachs alpha ranged from .86 to .95 on standardization samples (Davey & Tallis, 1994). In this sample, a = .94. 2.3.4. The Maternal Worry Scale for children with chronic illness (DeVet & Ireys, 1998) This scale measures worry experienced by mothers of children with chronic illness. The measure was modied for the purposes of this study; the term disability replaced illness or health condition. In addition, one item was removed, two items were added, and several were modied to better capture the experience of mothers worries about children with developmental disabilities, yielding a total of 13 items for this modied version (available from authors). A sample item is, I worry that my child wont be able to handle things in the future when he/she is on her/his own. Responses were provided on a 4-point Likert scale, ranging from 1 (not at all) to 4 (most of the time). Because the measure focuses primarily on futurerelated concerns, it will be referred to as Maternal (Future) Worry. In the standardization sample, Cronbachs alpha was .94, and testretest reliability was reported at .84 (DeVet & Ireys, 1998). In this sample, a = .90. 2.3.5. Autism Treatment Evaluation Checklist (ATEC; Rimland & Edelson, 1999) The ATEC measures parent-rated impairment in four areas: Speech, Sociability, Sensory/Cognitive Awareness, and Health/Physical Behavior. Response options were Likert scales with 3 or 4 levels. Higher scores indicate more impairment. Cronbachs alpha for the overall scale as reported by the authors is a = .94 (Autism Treatment Evaluation Checklist Report; http://legacy.autism.com/ari/atec/atec_report.htm). For the present sample, a = .95. 2.3.6. Open-ended worry question Mothers responded to the question, When you wake up in the middle of the night, what is it that you worry about? This question was adopted from the Routines-based Interview (McWilliam, 2001). 2.4. Data analysis plan Quantitative data were analyzed in SPSS using ANOVA and hierarchical linear regressions. For the qualitative analysis, primary and secondary coders used an analytic induction procedure to conduct a thematic analysis of mothers responses to the question, When you wake up in the middle of the night, what is it that you worry about? (Patton, 2002). Both coders reviewed the transcripts and developed tentative themes. The primary coder assigned participants responses to the themes, which were then examined by the secondary coder. New themes emerged during this process, which was repeated in an iterative fashion. The primary and secondary coders reached full agreement on themes and assignment of responses. Responses were allowed to contain more than one theme, and themes were organized into two domains. During this process, coders were blind to childs diagnosis, age, and severity of impairment. 3. Results 3.1. Quantitative ndings Descriptive data for the outcome measures are provided in Table 1, and Table 2 presents the bivariate correlations among study variables.

P.L. Ogston et al. / Research in Autism Spectrum Disorders 5 (2011) 13781384 Table 1 Descriptive data for outcome measures by diagnosis. AUT Penn State Worry Questionnaire Maternal (Future) Worrya State Hope Scalea
a a

1381

AS 35.1 33.4 33.0

PDD-NOS 34.6 30.6 32.8

DS 31.6 29.7 37.0

Total (average) 34.0 (8.0) 32.0 (8.2) 32.8

Actual range 1848 1352 648

Potential range 1680 1352 648

34.6 33.1 30.8

Note: A high numerical score indicates a high level of the construct.

Table 2 Bivariate correlations among study variables. Variable (1) (2) (3) (4) (5) (6) (7) (8) (9)
a *

2 .17**

3 .18** .43***

4 .14* .29*** .03

5 .08 .30*** .05 .49***

6 .63*** .29*** .11 .36*** .34***

7 .05 .44*** .19** .25*** .32*** .13*

8 .05 .25*** .02 .06 .16 .13 .45***

9 .17** .34*** .27*** .05 .01 .12 .40*** .37***

Childs age ATECa Parent rating of impairment Family income Mothers education (years) Mothers age State Hope Scale Penn State Worry Maternal (Future) Worry

Autism Treatment Evaluation Checklist. p < .05. ** p < .01. *** p < .001.

3.1.1. Predictors of dispositional worry Mothers dispositional worry (PSWQ) did not differ across diagnoses. However, there was a trend (p = .068) wherein mothers of children with autism, Aspergers syndrome and PDD-NOS reported more dispositional worry than did mothers of children with Down syndrome. A hierarchical linear regression (Table 3) was used to predict dispositional worry (PSWQ), with diagnosis entered on the rst step, impairment (ATEC) on the second step, and hope on the third. An ANOVA indicated that the overall model predicted dispositional worry, F(5, 253) = 13.78, p < .001. Diagnosis alone did not predict worry, R2 = .03 (p = .068). When impairment was added, DR2 = .04 (p = .001), and with the addition of hope, DR2 = .15 (p < .001). The R2 for the full model was .21. Mothers whose children had greater impairment and those with lower hope reported higher dispositional worry. 3.1.2. Predictors of Maternal (Future) Worry Mothers level of Maternal (Future) Worry differed by childs diagnosis, F(3, 255) = 3.01, p = .031. Post hoc tests using Tukeys HSD showed that mothers of children with autism reported greater future-related worry than mothers of children with Down syndrome (p = .042). No signicant differences were found in planned contrasts of the remaining diagnostic categories. A hierarchical linear regression was performed with Maternal (Future) Worry as the dependent variable and diagnosis, impairment (ATEC), and age as predictors, entered independently (Table 4). The overall model predicted future-related worry, F(5, 253) = 10.64, p < .001. Diagnosis alone predicted a small but signicant portion of Maternal (Future) Worry, R2 = .03 (p = .031). When impairment was added, DR2 = .09 (p < .001) and when childs age was added, DR2 = .05 (p < .001). The R2 for the full model was .17. Future worry was higher for mothers of older children and those with more severe impairment.

Table 3 Hierarchical regression analysis for variables predicting dispositional worry. Predictor Step 1: diagnosis AUT AS PDD-NOS DS Step 2: ATEC Step 3: hope
* **

B 34.61 .49 .05 3.03 .07 .37

SEB .69 1.56 1.47 1.23 .02 .05

b
.02 .00 .16* .23* .43**

b in nal model
.06 .04 .00 .06 .43**

R2 .03 .07 .21

DR2
.03 .04* .15**

p < .05. p < .001.

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Table 4 Hierarchical regression analysis for variables predicting Maternal (Future) Worry. Predictor Step 1: diagnosis AUT AS PDD-NOS DS Step 2: ATEC Step 3: childs age
* ** ***

B 33.06 .25 2.49 3.35 .10 .41

SEB .71 1.60 1.51 1.26 .02 .10

b in nal model
.01 .04 .04 .40*** .23***

R2 .03 .12 .17

DR2
.03* .09*** .05***

.01 .11 .17** .35*** .23***

p < .05. p < .01. p < .001.

Table 5 Hierarchical regression analysis for variables predicting hope. Predictor Step 1: diagnosis AUT AS PDD-NOS DS Step 2: ATEC Step 3: education
*

B 30.76 2.82 2.03 6.27 .13 .76

SEB .76 1.73 1.62 1.35 .02 .20

b
.10 .08 .30* .38* .22*

b in nal model
.03 .03 .10 .31* .22*

R2 .08 .19 .23

DR2
.08* .11* .04*

p < .001.

Table 6 Representation of mothers worries across central themes. Responses to: When you wake up in the middle of the night, what is it that you worry about? n (%) Domain: children and family focused worries Health, safety and death Well-being and adjustment What happens to child when parents die School related worries Domain: self focused worries Daily hassles Financial concerns Wellbeing and adjustment Work responsibilities and stressors 42 20 17 14 63 38 33 18 (16.2) (7.7) (6.6) (5.4) (24.3) (14.7) (12.7) (6.9)

3.1.3. Predictors of hope Mothers level of hope varied by diagnosis, F(3, 255) = 7.07, p < .001. Post hoc tests using Tukeys HSD revealed that mothers of children with autism reported lower hope than mothers of children with Down syndrome (p < .001). No signicant differences were found in planned comparisons of the remaining diagnostic categories. A hierarchical linear regression was performed to predict hope, with diagnosis, impairment, and education entered at independent steps (Table 5). The overall model was signicant, F(5, 252) = 15.16, p < .001. For diagnosis alone, R2 = .08 (p < .001). When child impairment was added, DR2 = .11 (p < .001), and when mothers education was added to the model, DR2 = .04 (p < .001). The models total R2 = .23. Mothers hope was lower for those with less education and those whose children had autism or more severe impairment. 3.2. Qualitative ndings Themes were organized under two domains: child and family focused worries and self focused worries, each of which held a number of themes. Table 6 presents the number and percent of mothers whose responses t each of the central themes within each domain. Representation of mothers worries according to each theme did not differ by diagnosis (Pearsons chi-square test, p > .05). 4. Discussion Our ndings bring together a unied picture of hope and worry in mothers of children with an autism spectrum disorder or Down syndrome. As predicted, mothers with higher hope reported less worry. Mothers of children with autism had lower

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hope and more future-related worry than those whose children had Down syndrome. Those whose children were higher functioning had higher hope, lower dispositional worry, and lower future-related worry. Mothers of older children reported more worry about their childs future. Overall, these ndings support previous research suggesting hope to be a protective factor (Snyder, 2002). Mothers who are able to plan for and meet their goals tenets of high hope may spend less time worrying in general. Excessive worry can interfere with thinking about stressful topics in a meaningful way (Fresco, Frankel, Mennin, Turk, & Heimberg, 2002), which may impede responding to challenges. Mothers who are wrapped up in worry may nd it hard to plan and to take care of both their childrens and their own needs. Hope is described as a stable construct, and therefore not much affected by situational or context (Snyder, 2002). However, having a child with a disability is more than a situational factor. Hope may be inuenced by stress and uncertainty, both of which are common in the lives of parents with disabilities, but are more common in mothers of children with autism when compared to mothers of children with Down syndrome (Myers, Mackintosh, & Goin-Kochel, 2009). That mothers of children with autism reported a higher level of maternal future worry may be due to the greater ambiguity that exists regarding their childs prognosis. For young children with autism, there is no reliable way of predicting their developmental outcomes. Families learn that some children on the autism spectrum make large gains while others do not, so whether their child will improve substantially is a realistic worry. A childs developmental trajectory may depend upon the treatments and therapies received, though even this is uncertain (Francis, 2005). Thus, selecting those treatments becomes a large responsibility (Lord, Cook, Leventhal, & Amaral, 2000). Having a child with a severe disability entails time spent on therapists appointments, providing treatments at home, dealing with school problems, and handling challenging behavior (Baker-Ericzen et al., 2005). These demands call upon the pathways component of hope. New problems emerge as the children grow older and as parents hopes that their child might marry, live independently, and hold a job diminish. Mothers of children with severe impairment may be overwhelmed by these challenges and may worry to the point that it negatively affects their ability to set and meet goals, a tenet of hope. Mothers were asked to describe what they worried about when they woke up at night. For many, their children and family were central concerns. They expressed worries about their childs safety (e.g. Is everyone in the house safe? Are the doors locked and alarms on so as I can hear when and if someone opens it. . .particularly our little runner?) and health (e.g. Is he getting better? Is he getting sick?). They worried about what their own death would mean for their child (e.g. I also have these horrible nightmares where I die in my sleep and no one knows and my son is all alone in the apartment.). Mothers described school related worries (e.g. If something happens to her I need to have a back-up plan and there are few educational situations that are a good match.) and some worried whether their child would ever be able to live independently (e.g. I worry about whether or not hell be able to hold down a decent job, and be able to at least partially support himself.). They worried about their childs ability to establish relationships, both in the present and in the future (e.g. Will he ever have a friend? and My child will never have a romantic relationship or friends; we will die and he will have nowhere to live and will be stuck in an institution. These worries are clearly different from those of mothers whose children are healthy and typically developing. Interestingly, many mothers revealed worries that were unrelated to their child with disabilities. Some concerned daily hassles of life (e.g. A messy house and Little things that need to be done the next day). One mother wrote that she worried about current bothersome situations and that most of them are not related to my disabled child. Mothers worried about their other relationships, for example: My marriage more than my children; and My parents are getting older sometimes my mom is vague in her memory.). Finances were a big worry; one mother wondered if we will have enough money to make it through the next few months. Mothers wrote about work-related tasks Having too much work to do not at home at work and whether they would have the time to get things done. Others wrote openly about their own wellbeing and happiness (e.g. Relationships, when will I ever be non-tired, how can I make it through life.). Mothers responses gave a glimpse of their experience as a parent of a child with a disability. However, it is clear that these women hold many roles: as mothers, wives, employees, friends and daughters. They have to clean the house, run errands, and service the car, just as most women do. Those employed outside the home also have to attend to their work related responsibilities. While these mothers worry a great deal about their children and families, they also worry about their own wellbeing and have maintained their sense of self. These ndings serve as a reminder that these mothers have hopes and dreams and problems of their own that go beyond their role as mothers of children with special needs. 5. Limitations and directions for future research The sample of participants in this study over-represented well-educated, white, married/partnered, and middle to high socioeconomic status mothers. This over-representation is due to both recruitment and methodological issues. Participants were recruited through autism and Down syndrome organizations, which limited the potential sample to families involved with these organizations and who had Internet access. An additional limitation is that childrens diagnosis and level of impairment were obtained through mothers self-report. This study informs our understanding of the experience of mothers who have a child with an autism spectrum disorder or Down syndrome. These ndings show that childs age, level of functioning, specic diagnosis, and maternal education impact mothers levels of hope and worry. Mothers worried about their child with a disability, and they also worried about their own lives and other responsibilities. While greater understanding of mothers psychological wellbeing is important in its own right, future research ought to examine the bi-directional relationship between parents psychological wellbeing and the

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developmental progress and wellbeing of their children with these disabilities. A further question is whether hope and worry serve as either a risk or protective factor in parents gaining access to and childrens responsiveness to interventions. There is the potential for these ndings to be incorporated into intervention programs for parents of children with disabilities, with the goal of improving the wellbeing and adjustment of everyone in the family. References
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