Luther 2005

40 The Journal of School Nursing Volume 21, Number 1February 2005

Research Article

Coping and Social Support for Parents ofChildren With Autism

Edith H. Luther, RN, MSN; Daryl L. Canham, RN, EdD, C; andVirginia Young Cureton, RN, DrPH

ABSTRACT: Autism in children has increased significantly in the past 15 years. The challengesand stressors associated with providing services and caring for a child with autism affect families,educators, and health professionals. This descriptive study used a survey to collect data on parentsperceptions of coping strategies and social support. Instruments included the Social Support Indexand the Family Crisis Oriented Personal Evaluation Scales. One half of the families identifiedserious stressors in addition to autism. Acquiring social support and reframing were the mostfrequently used coping strategies. The school nurse is in a position to identify needs and referfamilies to local support groups and agencies, facilitating social support and development of cop-ing strategies.

KEY WORDS: autism, coping, parents, school nursing, social support

INTRODUCTION

Autism is a complex developmental disorder that istypically noticed by parents or diagnosed between theages of 18 months and 3 years of age. It is one of fivedisorders known as pervasive developmental disordersand is characterized by severe impairment in severalareas of functioning including communication, be-havior, and socialization. Autism occurs in all social,racial, and ethnic groups (Autism Society of America,2002).

A major reason for studying the effects of autismon families is its rapidly increasing prevalence, re-cently estimated to be approximately 10 to 12 perl,000 individuals. A report by the California Depart-ment of Developmental Services (DDS) documented a273% increase in reported cases between 1987 and

Edith H. Luther RN, MSN, is a special education school nurse forthe San Mateo County Office of Education, San Bruno, CA.

Daryl L. Canham, RN, EdD, C, is an associate professor in theSchool of Nursing at San Jose State University, San Jose, CA, andwas the first reader on this project.

Virginia Young Cureton, RN, DrPH, is a professor in the School ofNursing at San Jose State University, San Jose, CA, and was the sec-ond reader on this project.

This article is based on the primary authors masters degree pro-ject.

1998. From 1998 through 2002, the number of per-sons with full-syndrome autism served by the Califor-nia DDS had increased from 10,360 to 20,377 (Cali-fornia Department of Developmental Services, 2003).Information from the Gevirtz Graduate School at theUniversity of California, Santa Barbara (UCSB), indi-cates that as many as 1.5 million Americans have beendiagnosed with autism, and the incidence of autism isincreasing by 1015% annually. Autism is the fastest-growing diagnosed developmental disability, with anannual national cost of $90 billion. Autism puts anenormous strain on education resources and takes atremendous toll on families (Autism Society of Amer-ica, 2002).

The UCSB Autism Center found that parents of chil-dren with autism are frustrated with the scarcity ofprofessionals trained to work with their children inspecialized programs (J. Zimmer, personal communi-cation, April 26, 2002). Some school nurses, especiallythose without special education experience, are inex-perienced in working with children with autism (Cade& Tidwell, 2001) and in providing support to theirparents.

When a family has a child with autism, the familyslife changes. In a phenomenological study, Werner(2001) isolated themes from in-depth interviews with

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Volume 21, Number 1 The Journal of School Nursing 41February 2005

parents. Themes included the following: (a) the fam-ilys life revolves around dealing with the childs au-tism and unusual behaviors; (b) parents feel losses be-cause they and their children cannot lead a normallife; and (c) the family experiences only fleeting mo-ments of feeling like a family. Autism affects the fam-ily so intensely that families require strong copingskills and formal and informal support.

Another stressor is the effect on the familys financ-es. Dobson and Middleton (as cited in Jarbrink, Fom-bonne, & Knapp, 2003) estimated that the cost of rais-ing a child with a disability is approximately threetimes greater than the cost of raising a nondisabledchild. Jarbrink and colleagues developed a scale tomeasure the cost of raising a child who is autistic.Costs to the family can include difficulties maintain-ing employment, lost leisure time opportunities, lesstime available for other children in the family, anddifficulty finding or paying for adequate child care.

Research studies have shown that being a parent ofa child with autism can be more stressful than par-enting a child with a chronic illness or developmentaldisability (Tunali & Power, 2002; Sounders, DePaul,Freeman, & Levy, 2002). Behavioral problems that canoccur in children with autism include unpredictableaggression toward self and others. Characteristics ofautism, such as the childs high level of anxiety, moodswings, difficulty making transitions, echolalia, or ab-sence of speech, make raising a child with autism chal-lenging and stressful for parents (Rapin, 1997).

Research studies have shown that beinga parent of a child with autism can bemore stressful than parenting a child witha chronic illness or developmentaldisability

The stress of raising a child with a serious disabilitycan be a precipitating factor in parental depression,particularly for mothers (Little, 2002; Rousey, Best, &Blancher, 1992). Parents benefit from counseling andparent support groups to cope and help reduce stress.In addition, community agencies can provide respitecare and other services that benefit parents and theirchildren with autism (Rapin, 1997).

The purposes of this study were to assess perceivedlevels of informal and formal social support amongfamilies of autistic children and to examine ways par-ents of children with autism cope. A demographicquestionnaire and two established quantitative sur-veys were used. Parent participants were of variousethnicities and income levels. The Resiliency Model ofFamily Stress, Adjustment, and Adaptation (as cited inMcCubbin, Thompson, & McCubbin, 1996) was thetheoretical model selected. This model focuses on

strengths within families and addresses componentsof stress, coping, and social support.

LITERATURE REVIEW

The impact of stress and social support on familiesthat have children with autism, special needs, orchronic illnesses has been documented in the litera-ture. Several studies examined and delineated stressorsrelated to parenting a child with autism or develop-mental disabilities, including coping strategies, self-ef-ficacy, and behavioral control.

Tunali and Power (2002) hypothesized that parentshave a low level of control in the case of having achild with autism. The study participants were inter-viewed extensively during home visits. The study re-sults supported the hypothesis that mothers of autisticchildren who were the most satisfied with their liveshad made cognitive and lifestyle changes that werecongruent with raising a child with autism. Also, theyhad adapted strategies to adjust to raising an autisticchild. Examples of the beliefs and attitudes of themothers of children with autism who coped success-fully included the following: (1) the mothers placedmore importance on their role as a parent than oncareer-related success; (2) they placed less importanceon others opinions of their childs behavior; and (3)they had a higher tolerance for ambiguity regardingtheir childs condition and future, and in their ap-proach to life.

Additional studies looked at mothers and fathers inrelation to raising a child with autism spectrum dis-orders or developmental disabilities. Little (2002) ex-amined differences in stress and coping betweenmothers and fathers of children with Asperger syn-drome and nonverbal learning disorder. A comparisonwas made of how mothers and fathers coped. Littleconcluded that because mothers reported performingmore of the child care, home maintenance, and col-laboration with teachers and medical personnel, theywere more stressed than the fathers. The motherssought professional help and used antidepressantmedication more frequently than the fathers, as a re-sult of their higher stress levels.

Rousey and colleagues (1992) studied mothers andfathers perceptions of stress and coping with childrenwho had severe developmental disabilities and exam-ined the risk of depression in this group. Both mothersand fathers indicated they were involved in takingcare of the child with a disability. The risk of depres-sion and pessimism was found to be similar for fathersand mothers and was higher than the norm on theQuestionnaire on Resources and Stress subscales. Thisstudy suggests that depression was a consequence ofthe stressors they experienced.

Two studies examined cultural differences in per-ceptions of social support. Bailey and colleagues(1999) studied needs and supports of Latino families



with children who had developmental disabilities.The researchers used the Family Support Scale devel-oped by Dunst, Trivette, and Jenkins (cited in Baileyand colleagues) that measured support from familyand friends, as well as informal and formal support.Family support was rated highest, but formal supportfrom professionals was also considered important. Ac-cording to the researchers, most families perceivedprofessionals as experts who could advise and recom-mend services to meet their childs needs. Anotherfinding was that families who were most acculturatedinto their communities had higher levels of informalsupport.

The second study (Shin, 2002) compared social sup-port for families of children with mental retardationin the United States and Korea. Shin looked at culturaldifferencessuch as the fact that Koreans live in a col-lectivist societythat would lead to an assumptionthat family support would be greater. She found sev-eral factors that did not support this assumption. Ko-reans traditionally had a more negative attitude to-ward individuals with disabilities; some families didnot live in close proximity to extended families; andin some cases, because it was considered shameful tohave a child with a disability, assistance was notsought from family members. Also, Korean womendid not seek professional support as readily. The Ko-rean women scored higher on measures of stress thanthe American women in the study. The findings of Bai-ley and colleagues (1999) and Shin assist in providinga broader perspective when working with families ofdifferent ethnic groups and anticipating their needsrelated to caring for a child with disabilities.

Two other studies were identified that used researchtools applicable for studying stress and coping in fam-ilies with children with autism. Donenberg and Baker(1993) compared (a) parents of preschool childrenwith externalizing behaviors (aggression, hyperactivi-ty, and noncompliance); (b) parents of children withautism; and (c) a control group of parents of neuro-typically developing children. The researchers devel-oped the Family Impact Questionnaire-R for use in thestudy. The Abidin Parent Stress Index and the BeckDepression Scale were also used. They found that thelevel of stress experienced by parents of children withexternalizing behaviors as compared with behaviorsassociated with autism was equally high. They alsofound that families of children with autism were morelikely to be receiving support and educational servicesat an earlier age.

Gray and Holden (1992) examined psychosocialwell-being among parents of children and youngadults with autism. They used the Coping Health In-ventory (CHIP) and the Social Support Index (SSI),both developed by McCubbin and associates (as citedin Gray & Holden), and other measures for depression,anger, and anxiety. Results indicated that anger andanxiety in parents were negatively proportional to so-

cial support, which was consistent with previous stud-ies. Mothers reported significantly higher levels of de-pression and anxiety than fathers. Another findingwas that anger levels were higher for parents of boysand older children with autism than girls and youngerchildren, which was attributed to behavioral controldifficulties.

The literature demonstrated the applicability of avariety of data-gathering instruments in studyingstress and coping issues related to families of childrenwith autism or severe developmental disabilities. Re-current themes identified in the literature were factorsthat increased or decreased stress, coping strategies,social support, identification of family members athigher risk, and cultural considerations.

THEORETICAL PERSPECTIVE/CONCEPTUALFRAMEWORK

The conceptual framework for this study is the Re-siliency Model of Family Stress, Adjustment, and Ad-aptation developed by McCubbin and colleagues(1996). The Resiliency Model conceptualizes the de-mands, resources, and developmental issues involvedin family life from a holistic perspective (Malone,1998). Family resiliency theory has been used exten-sively to study families at risk. Having a child withautism can cause extreme stress in a family, whichmay already have other risk factors such as: (a) singleparenting or divorce, (b) child-care needs, (c) care ofill or elderly extended family members, or (d) lack offinancial resources; all of these can create a cumulativeeffect (McCubbin, McCubbin, Thompson, Han, & Al-len, 1997).

In the Resiliency Model, there is an adjustment phaseduring which the diagnosis of an illness or conditionsuch as autism takes place. In this phase, the familymay need or benefit from crisis intervention, becausetheir usual coping skills would be insufficient; also inthis phase, the family would reframe their under-standing of what has occurred (Malone, 1998).

Next is the adaptation phase, during which the fam-ily attempts to meet the demands of the childs dis-ability. Protective factors that can help sustain thefamily include the following: (a) at the personal level,self-efficacy and self-esteem; (b) at the family level,communication among members, problem solving,and extended family support; and (c) at the commu-nity level, the familys social network for informalsupport, religious and cultural associations, and for-mal support such as health professionals (McCubbinet al., 1997).

Families that adapt successfully tend to have traitsof resiliency, good coping skills, and informal and for-mal social support from the community. The Resilien-cy Framework emphasizes positive attributes such asfamily bonding, flexibility, strength, and problem-



solving abilities. This is especially important in timesof stress or crisis (McCubbin et al., 1997).

METHODOLOGY

Design

This study used a descriptive survey design and aconvenience sample. Participants completed a demo-graphic questionnaire and two Likert-type scales com-posed of questions with responses ranging from 1(strongly disagree) to 5 (strongly agree) that examinedcoping strategies and formal and informal types of so-cial support. The coping scale allowed for an analysisof subscales for different coping strategies. The de-mographic questionnaire gathered data about concur-rent stressors in the family.

Participants, Setting, and Analysis

Participants were parents of children with autism(ages 5 to 13 years old) who were enrolled in selectedspecial education classes in a northern Californiacounty. A convenience sample of 72 families was iden-tified. Eighteen families completed and returned thequestionnaires. Consultation with the statistician re-sulted in calculating frequencies and percentages forthe demographic questionnaire; the mean scores onthe SSI and Family Crisis Oriented Personal EvaluationScales (F-COPES) scales and subscales were comparedwith a normed sample (as cited in McCubbin et al.,1996).

Procedures

The research study was approved by a Human Sub-jects Institutional Review Board at San Jose State Uni-versity, and written permission was obtained from arepresentative of the County Special Education Pro-gram. Surveys were sent to selected parents with in-structions for the primary caretaker to complete thequestionnaire and return it within 3 weeks. Confiden-tiality was ensured by the anonymity of the surveyand by aggregating the data. Participation in the studywas voluntary.

Instrumentation

The F-COPES, developed by McCubbin, Olson, andLarsen in 1981, and the SSI, developed by McCubbin,Patterson, and Glynn in 1982 (both cited in Mc-Cubbin et al., 1996), and a demographic questionnairedeveloped by the researcher were the instrumentsused. The F-COPES scale features 30 coping strategiesthat focus on the two levels of interaction outlined inthe Family Resiliency Model: (a) individual-to-familysystems, and (b) family-to-social environment or waysin which families externally cope with problems ordemands (McCubbin et al., 1996). The F-COPES scalerates 30 items on a 5-point Likert scale with responses

ranging from 1 (strongly disagree) to 5 (strongly agree).The questions are divided into five subsections: (I) ac-quiring social support, (II) reframing, (III) seeking spir-itual support, (IV) mobilizing family to acquire andaccept help, and (V) passive appraisal (McCubbin etal., 1996).

The SSI is a 17-item questionnaire that reflects thedegree to which families feel integrated into the com-munity and view the community as a source of social,emotional, or networking support. The SSI similarlyuses a 5-point Likert scale with responses ranging 1(strongly disagree) to 5 (strongly agree). Community so-cial support is related to the familys sense of unityand confidence and serves as a buffer from stress. So-cial support was a predictor of family resiliency in aresearch study of 500 families (McCubbin et al., 1996).Permission was obtained from Dr. M. McCubbin to usethe SSI and F-COPES scales.

RESULTS

Demographic Data

Table 1 summarizes the responses to the demo-graphic questionnaire. Eighteen of 72 surveys were re-turned, indicating a 25% response rate. Responses in-dicated that about three fourths of the children livedwith both parents, and one fourth lived with one par-ent or divorced parents.

Participants were asked about their ethnic identity.The Asian and Filipino groups combined made up ap-proximately one third of the total, Hispanic or Latinofamilies were approximately one third, and Caucasianand other families were approximately one third. Theethnic groupings were fairly representative of the mul-ticultural population of the county. Parents wereasked which language was usually spoken in thehome. Of the 11 English-speaking families, 4 were bi-lingual, with Tagalog (Filipino), Arabic, and Spanishalso spoken in the home. In seven families, Spanishwas the predominant language spoken in the home.

The mean number of children under 18 years of ageper family was 2.3. The number of children with au-tism in the family was one (n 5 16, or 88%), two (n5 1, or 6%), and three (n 5 1, or 6%). The mean ageof the children with autism was 8.3 years old. Thereare 41 children in the participants families, including21 children with autism and 20 siblings.

Responses on the demographic questionnaire indi-cated that significant additional stressors were report-ed in 50% of the families. Identified stressors were fi-nances and unemployment (n 5 2); father living orworking in another county (n 5 2); chronic healthconditions, such as asthma or diabetes, in the childwith autism (n 5 2); attention deficit hyperactivitydisorder (ADHD) (n 5 1); transportation problems (n5 1); and recent divorce (n 5 1). Stressors are similarlypresent in the normative families, but difficulties arecompounded in families of children with special



Table 1. Demographic Characteristics of Respondents (N 518)

Characteristic and Group n %

Child lives withMotherBoth parents

414

2278

Type of familySingle parentMarried/coupleOther/extended family

2142

117811

Ethnicity of familyCaucasianHispanicChinese/AsianFilipinoEast IndianDecline to state

553212

282818126

12

Language usually spoken at homeEnglish or English/bilingualSpanishCantoneseGujarati (East Indian)

11421

6122116

Estimated yearly family incomeUp to $30,000$30,000$50,000$50,000$80,000$80,0001

31113

17626

17

Gender of child with autismFemaleMale

414

2278

Other significant stressors in familyYesNo

99

5050

Parent attended autism support group atleast 1 or 2 times per year

YesNoNo, but would like to attend

783

394417

Note. Not all percentages equal 100% because of rounding.

needs, putting them at greater risk (McCubbin et al.,1997).

Results of F-COPES

The mean total score on the F-COPES for the par-ents of children with autism was 103.8, as comparedwith the normed group mean of 93.1 for men and95.6 for women (McCubbin et al., 1996). The F-COPESsubscale scores are presented in Figure 1.

Subscale I, Acquiring Social Support, ques-tions how participants acquire support from relatives,friends, and neighbors. The participants in this studyscored similarly (27.5) to the normed group (27.1).

Subscale II, Reframing, relates to how the fam-ily perceives stressful events and their situation. Theparticipants scored slightly higher (31.3) than thenormed group (30.4). As an example of reframing,78% agreed or strongly agreed that they defined fam-

ily problems in more positive ways to avoid becomingdiscouraged.

Although 83% of the sample stronglyagreed with a statement about havingfaith in God as a way of coping, fewerthan half coped by attending churchservices or activities or sought advicefrom a minister.

Subscale III, Seeking Spiritual Support, re-flects the familys religious ideology, participation inorganized religious groups, or seeking advice fromclergy. The participants scored lower (14.3) than thenormed group (16.6). Although 83% of the samplestrongly agreed with a statement about having faithin God as a way of coping, fewer than half coped byattending church services or activities or sought ad-vice from a minister.

Subscale IV, Mobilizing to Acquire and Ac-cept Help, refers to the familys ability to seek outcommunity resources, including neighborhood agen-cies and programs or counseling from health care pro-viders and other professionals (McCubbin et al.,1996). The participants scored higher (15.6) than thenormed group (12.7) in this subscale. Seventy-one per-cent of the sample wanted professional counseling forfamily difficulties, and 67% sought information fromthe family doctor.

Subscale V, Passive Appraisal, refers to accept-ing problematic issues by reacting less strongly, avoid-ance, or using passivity as a coping strategy. This typeof response may be based on a familys lack of confi-dence in their ability to alter outcomes (McCubbin etal., 1996). Passive appraisal had a mean of 14.6 in thissample as compared with a mean of 8.5 for a normedgroup. An example of passive appraisal was watchingtelevision, which 33% of the sample said they used asa way to cope. Other examples included relying onluck, waiting for things to change, or having feelingsof hopelessness.

The SSI scores for the parents of autistic childrenresulted in a mean of 45.3 as compared with a meanof 43.4 for the normed group. The normative groupconsisted of 881 women in military families overseaswho were participants in the development of the SSIscales (McCubbin et al., 1996). Although the normedgroup participants were also in a uniquely stressful sit-uation, the parents of children with autism in thisstudy scored slightly higher in use of social supportsthan the normed group. The SSI includes questions oninformal social support from families and communi-ties only, not formal social support by health or edu-cational professionals.

The parents responses to individual questions on



Figure 1. Mean Scores on the Family Crisis Oriented Personal Evaluation Scales (F-COPES)

the SSI scale were ranked from high to low in termsof obtaining social support, as follows:

1. Importance of close friends outside the family:83% agreed or strongly agreed.

2. Parents felt loved by family members and feltgood about sacrificing for their family: 78%agreed or strongly agreed.

3. This is a good community to raise children: 56%agreed or strongly agreed.

4. Families can get help from community when introuble: 50% agreed or strongly agreed.

DISCUSSION

Parent support groups are a means of providingsocial support within the framework of the education-al or community setting. Approximately half of theparents indicated they had attended or were interestedin attending an autism support group. Dyson (1997),in a study of stress and social support for parents ofchildren with developmental delays, advocated for es-tablishment of community-based support groups.Support groups benefit parents by giving them a placeto discuss their difficulties, to share coping strategiesand accomplishments, and to meet other parents in asimilar situation. Siblings of the child with autism andextended family members who share in child care re-sponsibilities can also benefit from support groups.

Support groups benefit parents by givingthem a place to discuss their difficulties,to share coping strategies andaccomplishments, and to meet otherparents in a similar situation.

Regarding the use of reframing, the F-COPES sub-scales (McCubbin et al., 1996) were an indicator ofcoping methods used by families in this study. Therehave been relatively few studies on coping strategiesother than social support for parents of children withautism. Reframing as a coping strategy scored highestof the subscales for the participants and for thenormed group, indicating that the parents outlook orreframing can be a factor in successful coping. Re-framing relates to the familys perception of stressfulexperiences (McCubbin et al., 1996). This is consistentwith Tunali and Powers (2002) findings that redefi-nition of personal and family goals and prioritieshelped families cope with autism.

Social support ranked second as a coping methodfor families in this study. Many parents had experi-ence obtaining the formal and informal social supportthey needed to educate their child. There were indi-vidual differences in accessing support services be-cause of difficulties such as inability to speak English,lack of transportation for parents, and low income lev-els. Social support has been correlated with improvedcoping for parents in a number of research studies(Dyson, 1997; Hastings & Brown, 2002).

Parenting a child with autism who needsconstant supervision and behavioralinterventions can make it difficult toparticipate in a social setting such as areligious service, which can involveexpectations for certain types of behavior.

Spiritual support was rated lower by the partic-ipants in this survey than by those in the normedgroup. Many parents in this survey strongly agreed



that belief in God was a way they cope with stress.However, fewer parents said they participated in struc-tured religious activities or sought counseling fromclergy as a coping strategy as compared with thenormed group. Parenting a child with autism whoneeds constant supervision and behavioral interven-tions can make it difficult to participate in a socialsetting such as a religious service, which can involveexpectations for certain types of behavior.

Regarding the Passive Appraisal subscale, theparticipants had a higher score for this subscale thanthe normed group did. This subscale focuses on inac-tive or passive behaviors the family may use, such asavoidance responses based on a lack of confidence inability to alter outcomes (McCubbin et al., 1996). Insome cases, families may believe that passive behav-iors such as watching television relieve stress. Thisfinding of higher scores for passive behaviors mayhave resulted from severe stressors facing the parentscoping with autism as compared with the normedgroup and beliefs that problems associated with thecondition of autism are difficult to change.

The SSI responses were consistently high for socialsupport from close friends and family members. How-ever, few families relied on neighbors for help andsupport. Responses for obtaining help when neededand feeling comfortable within the community werevariable, ranging from strongly agree to strongly disagree.These mixed responses about the availability of com-munity support may have resulted from differing cul-tural and socioeconomic levels of the families andfrom differing lengths of time they have resided in thecommunity or country. Bailey and colleagues (1999)found that families who were more acculturated intotheir communities had higher levels of informal sup-port.

Balancing multiple role responsibilities is a difficulttask for parents, and it has not been examined exten-sively in research studies in families of children withspecial needs, with the exception of role differencesbetween mothers and fathers (Rousey et al., 1992).Grandparents and extended family members whohelp with child care can be a valuable source of socialsupport, allowing the parents greater flexibility towork and meet their familys financial needs. To beeffective in meeting the childs physical and emotion-al needs, any family caretaker needs to have an un-derstanding of the childs special needs.

Limitations of the Study

The small number of participants was a limitationthat prevents generalization of the results to other set-tings. The low rate of participation in this study (25%)may have been partially due to the indirect methodof communication (a letter sent via the teacher) or be-cause parents were busy and forgot to respond. Letterswere sent in September, at the beginning of the school

year, which may have been a particularly busy time.Sending a follow-up reminder postcard might havebeen helpful to enlist more participants. Another lim-itation was the use of a convenience sample.

CONCLUSION

Several studies (Gray & Holden, 1992; Hastings &Brown, 2002; Tunali & Power, 2002) and findings ofthis study indicated that families of children with au-tism face many challenges and stressors. The schoolnurse is in a position to identify potential and existingproblems and assist with appropriate interventions.Assessing the stress levels, coping issues, and socialsupport of this high-risk group can facilitate more ef-fective interventions. Survey tools for stress and cop-ing such as the SSI and F-COPES have had limited usein special education settings with parents of autisticchildren. Assessment of parental concerns by theschool nurse could help the parents feel more sup-ported. The coping strategies of spiritual support, pas-sive appraisal, and reframing have not been extensive-ly studied in parents of autistic children, especially inthe school setting.

IMPLICATIONS FOR SCHOOL NURSING PRACTICE

This study found that half of the children with au-tism had coexisting medical conditions such as asth-ma, diabetes, or ADHD. School nurses are a link be-tween the educational and medical specialties, and agoal is to be an effective resource to parents and teach-ers of autistic children. Finding the optimal treatmentapproach or interventions for a child with autism canbe complex and often requires a team approach, es-pecially when the child with autism has coexistingconditions (Tsai, 2001). The school nurse is an integralpart of an educational intervention team. The schoolnurse can help parents or caregivers to examine infor-mation and make informed decisions about their child(Cade & Tidwell, 2001).

This study found that half of the childrenwith autism had coexisting medicalconditions such as asthma, diabetes, orADHD. School nurses are a link betweenthe educational and medical specialties,and a goal is to be an effective resourceto parents and teachers of autisticchildren.

Dyson (1997) advocated for establishing supportgroups for fathers and mothers of children with de-velopmental disabilities and stated that social supportshould be examined to determine which types of sup-port are most effective. Cade and Tidwell (2001) sug-gested that school nurses can help parents of children



with autism develop effective coping strategies. An ex-ample is recognizing that the child will make smallsteps toward a long-term goal and celebrating pro-gress. These are examples of reframing.

Examples of formal support include two special ed-ucation teachers who conducted an educational andinformational support group for parents of childrenwith autism and a support group for Spanish-speakingparents led by a skilled bilingual teachers assistant.Child care was provided for the child with autism andsiblings to make it easier for parents to attend. Schoolnurses can encourage parents to attend autism supportgroups available in their community or schools. In ad-dition, school nurses can participate as guest speakerson related topics within their area of expertise (Cade& Tidwell, 2001). School nurses, in partnership witheducators, can be instrumental in organizing supportgroups if there are none in the school setting.

Another way to support the parents is to use ascreening tool such as the ones used in this study todetermine the parents stress levels or coping skills.Little (2002) stated that nurses in schools and in thecommunity are in a prime position to assess the lev-els of stress on caregiving parents and to address cop-ing strategies. A few questions derived from a toolsuch as the F-COPES might be used. A short demo-graphic questionnaire can be modified as an assess-ment tool to learn more about family structure andstressors. School nurses should develop cultural sen-sitivity and awareness, because, as demonstrated bythis study and data from the Autism Society of Amer-ica (2002), autism is present in many cultures.

The results of this study are important for schoolnurses providing services to children with autism andtheir families. A component of the school nurse roleis assisting parents to identify and use support servicesavailable through the school, health care providersand other professionals, and community organiza-tions. Determining access to informal and formal so-cial support and examining coping strategies of par-ents of autistic children will assist school nurses inbetter understanding and meeting their needs.

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Luther 2005