Research Article

Coping and Social Support for Parents of

Children With Autism
Edith H. Luther, RN, MSN; Daryl L. Canham, RN, EdD, C; and
Virginia Young Cureton, RN, DrPH

ABSTRACT: Autism in children has increased significantly in the past 15 years. The challenges
and 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 parents
perceptions of coping strategies and social support. Instruments included the Social Support Index
and the Family Crisis Oriented Personal Evaluation Scales. One half of the families identified
serious stressors in addition to autism. Acquiring social support and reframing were the most
frequently used coping strategies. The school nurse is in a position to identify needs and refer
families to local support groups and agencies, facilitating social support and development of coping strategies.
KEY WORDS: autism, coping, parents, school nursing, social support

INTRODUCTION
Autism is a complex developmental disorder that is
typically noticed by parents or diagnosed between the
ages of 18 months and 3 years of age. It is one of five
disorders known as pervasive developmental disorders
and is characterized by severe impairment in several
areas of functioning including communication, behavior, and socialization. Autism occurs in all social,
racial, and ethnic groups (Autism Society of America,
2002).
A major reason for studying the effects of autism
on families is its rapidly increasing prevalence, recently estimated to be approximately 10 to 12 per
l,000 individuals. A report by the California Department of Developmental Services (DDS) documented a
273% increase in reported cases between 1987 and

Edith H. Luther RN, MSN, is a special education school nurse for

the San Mateo County Office of Education, San Bruno, CA.
Daryl L. Canham, RN, EdD, C, is an associate professor in the
School of Nursing at San Jose State University, San Jose, CA, and
was the first reader on this project.
Virginia Young Cureton, RN, DrPH, is a professor in the School of
Nursing at San Jose State University, San Jose, CA, and was the second reader on this project.
This article is based on the primary authors masters degree project.

40

The Journal of School Nursing

1998. From 1998 through 2002, the number of persons with full-syndrome autism served by the California DDS had increased from 10,360 to 20,377 (California Department of Developmental Services, 2003).
Information from the Gevirtz Graduate School at the
University of California, Santa Barbara (UCSB), indicates that as many as 1.5 million Americans have been
diagnosed with autism, and the incidence of autism is
increasing by 1015% annually. Autism is the fastestgrowing diagnosed developmental disability, with an
annual national cost of $90 billion. Autism puts an
enormous strain on education resources and takes a
tremendous toll on families (Autism Society of America, 2002).
The UCSB Autism Center found that parents of children with autism are frustrated with the scarcity of
professionals trained to work with their children in
specialized programs (J. Zimmer, personal communication, April 26, 2002). Some school nurses, especially
those without special education experience, are inexperienced in working with children with autism (Cade
& Tidwell, 2001) and in providing support to their
parents.
When a family has a child with autism, the familys
life changes. In a phenomenological study, Werner
(2001) isolated themes from in-depth interviews with

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parents. Themes included the following: (a) the familys life revolves around dealing with the childs autism and unusual behaviors; (b) parents feel losses because they and their children cannot lead a normal
life; and (c) the family experiences only fleeting moments of feeling like a family. Autism affects the family so intensely that families require strong coping
skills and formal and informal support.
Another stressor is the effect on the familys finances. Dobson and Middleton (as cited in Jarbrink, Fombonne, & Knapp, 2003) estimated that the cost of raising a child with a disability is approximately three
times greater than the cost of raising a nondisabled
child. Jarbrink and colleagues developed a scale to
measure the cost of raising a child who is autistic.
Costs to the family can include difficulties maintaining employment, lost leisure time opportunities, less
time available for other children in the family, and
difficulty finding or paying for adequate child care.
Research studies have shown that being a parent of
a child with autism can be more stressful than parenting a child with a chronic illness or developmental
disability (Tunali & Power, 2002; Sounders, DePaul,
Freeman, & Levy, 2002). Behavioral problems that can
occur in children with autism include unpredictable
aggression toward self and others. Characteristics of
autism, such as the childs high level of anxiety, mood
swings, difficulty making transitions, echolalia, or absence of speech, make raising a child with autism challenging and stressful for parents (Rapin, 1997).

Research studies have shown that being

a parent of a child with autism can be
more stressful than parenting a child with
a chronic illness or developmental
disability
The stress of raising a child with a serious disability
can be a precipitating factor in parental depression,
particularly for mothers (Little, 2002; Rousey, Best, &
Blancher, 1992). Parents benefit from counseling and
parent support groups to cope and help reduce stress.
In addition, community agencies can provide respite
care and other services that benefit parents and their
children with autism (Rapin, 1997).
The purposes of this study were to assess perceived
levels of informal and formal social support among
families of autistic children and to examine ways parents of children with autism cope. A demographic
questionnaire and two established quantitative surveys were used. Parent participants were of various
ethnicities and income levels. The Resiliency Model of
Family Stress, Adjustment, and Adaptation (as cited in
McCubbin, Thompson, & McCubbin, 1996) was the
theoretical model selected. This model focuses on
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strengths within families and addresses components

of stress, coping, and social support.
LITERATURE REVIEW
The impact of stress and social support on families
that have children with autism, special needs, or
chronic illnesses has been documented in the literature. Several studies examined and delineated stressors
related to parenting a child with autism or developmental disabilities, including coping strategies, self-efficacy, and behavioral control.
Tunali and Power (2002) hypothesized that parents
have a low level of control in the case of having a
child with autism. The study participants were interviewed extensively during home visits. The study results supported the hypothesis that mothers of autistic
children who were the most satisfied with their lives
had made cognitive and lifestyle changes that were
congruent with raising a child with autism. Also, they
had adapted strategies to adjust to raising an autistic
child. Examples of the beliefs and attitudes of the
mothers of children with autism who coped successfully included the following: (1) the mothers placed
more importance on their role as a parent than on
career-related success; (2) they placed less importance
on others opinions of their childs behavior; and (3)
they had a higher tolerance for ambiguity regarding
their childs condition and future, and in their approach to life.
Additional studies looked at mothers and fathers in
relation to raising a child with autism spectrum disorders or developmental disabilities. Little (2002) examined differences in stress and coping between
mothers and fathers of children with Asperger syndrome and nonverbal learning disorder. A comparison
was made of how mothers and fathers coped. Little
concluded that because mothers reported performing
more of the child care, home maintenance, and collaboration with teachers and medical personnel, they
were more stressed than the fathers. The mothers
sought professional help and used antidepressant
medication more frequently than the fathers, as a result of their higher stress levels.
Rousey and colleagues (1992) studied mothers and
fathers perceptions of stress and coping with children
who had severe developmental disabilities and examined the risk of depression in this group. Both mothers
and fathers indicated they were involved in taking
care of the child with a disability. The risk of depression and pessimism was found to be similar for fathers
and mothers and was higher than the norm on the
Questionnaire on Resources and Stress subscales. This
study suggests that depression was a consequence of
the stressors they experienced.
Two studies examined cultural differences in perceptions of social support. Bailey and colleagues
(1999) studied needs and supports of Latino families

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41

with children who had developmental disabilities.

The researchers used the Family Support Scale developed by Dunst, Trivette, and Jenkins (cited in Bailey
and colleagues) that measured support from family
and friends, as well as informal and formal support.
Family support was rated highest, but formal support
from professionals was also considered important. According to the researchers, most families perceived
professionals as experts who could advise and recommend services to meet their childs needs. Another
finding was that families who were most acculturated
into their communities had higher levels of informal
support.
The second study (Shin, 2002) compared social support for families of children with mental retardation
in the United States and Korea. Shin looked at cultural
differencessuch as the fact that Koreans live in a collectivist societythat would lead to an assumption
that family support would be greater. She found several factors that did not support this assumption. Koreans traditionally had a more negative attitude toward individuals with disabilities; some families did
not live in close proximity to extended families; and
in some cases, because it was considered shameful to
have a child with a disability, assistance was not
sought from family members. Also, Korean women
did not seek professional support as readily. The Korean women scored higher on measures of stress than
the American women in the study. The findings of Bailey and colleagues (1999) and Shin assist in providing
a broader perspective when working with families of
different ethnic groups and anticipating their needs
related to caring for a child with disabilities.
Two other studies were identified that used research
tools applicable for studying stress and coping in families with children with autism. Donenberg and Baker
(1993) compared (a) parents of preschool children
with externalizing behaviors (aggression, hyperactivity, and noncompliance); (b) parents of children with
autism; and (c) a control group of parents of neurotypically developing children. The researchers developed the Family Impact Questionnaire-R for use in the
study. The Abidin Parent Stress Index and the Beck
Depression Scale were also used. They found that the
level of stress experienced by parents of children with
externalizing behaviors as compared with behaviors
associated with autism was equally high. They also
found that families of children with autism were more
likely to be receiving support and educational services
at an earlier age.
Gray and Holden (1992) examined psychosocial
well-being among parents of children and young
adults with autism. They used the Coping Health Inventory (CHIP) and the Social Support Index (SSI),
both developed by McCubbin and associates (as cited
in Gray & Holden), and other measures for depression,
anger, and anxiety. Results indicated that anger and
anxiety in parents were negatively proportional to so42

The Journal of School Nursing

cial support, which was consistent with previous studies. Mothers reported significantly higher levels of depression and anxiety than fathers. Another finding
was that anger levels were higher for parents of boys
and older children with autism than girls and younger
children, which was attributed to behavioral control
difficulties.
The literature demonstrated the applicability of a
variety of data-gathering instruments in studying
stress and coping issues related to families of children
with autism or severe developmental disabilities. Recurrent themes identified in the literature were factors
that increased or decreased stress, coping strategies,
social support, identification of family members at
higher risk, and cultural considerations.
THEORETICAL PERSPECTIVE/CONCEPTUAL
FRAMEWORK
The conceptual framework for this study is the Resiliency Model of Family Stress, Adjustment, and Adaptation developed by McCubbin and colleagues
(1996). The Resiliency Model conceptualizes the demands, resources, and developmental issues involved
in family life from a holistic perspective (Malone,
1998). Family resiliency theory has been used extensively to study families at risk. Having a child with
autism can cause extreme stress in a family, which
may already have other risk factors such as: (a) single
parenting or divorce, (b) child-care needs, (c) care of
ill or elderly extended family members, or (d) lack of
financial resources; all of these can create a cumulative
effect (McCubbin, McCubbin, Thompson, Han, & Allen, 1997).
In the Resiliency Model, there is an adjustment phase
during which the diagnosis of an illness or condition
such as autism takes place. In this phase, the family
may need or benefit from crisis intervention, because
their usual coping skills would be insufficient; also in
this phase, the family would reframe their understanding of what has occurred (Malone, 1998).
Next is the adaptation phase, during which the family attempts to meet the demands of the childs disability. Protective factors that can help sustain the
family 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 community level, the familys social network for informal
support, religious and cultural associations, and formal support such as health professionals (McCubbin
et al., 1997).
Families that adapt successfully tend to have traits
of resiliency, good coping skills, and informal and formal social support from the community. The Resiliency Framework emphasizes positive attributes such as
family bonding, flexibility, strength, and problem-

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solving abilities. This is especially important in times

of stress or crisis (McCubbin et al., 1997).
METHODOLOGY
Design
This study used a descriptive survey design and a
convenience sample. Participants completed a demographic questionnaire and two Likert-type scales composed of questions with responses ranging from 1
(strongly disagree) to 5 (strongly agree) that examined
coping strategies and formal and informal types of social support. The coping scale allowed for an analysis
of subscales for different coping strategies. The demographic questionnaire gathered data about concurrent 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 selected
special education classes in a northern California
county. A convenience sample of 72 families was identified. Eighteen families completed and returned the
questionnaires. Consultation with the statistician resulted in calculating frequencies and percentages for
the demographic questionnaire; the mean scores on
the SSI and Family Crisis Oriented Personal Evaluation
Scales (F-COPES) scales and subscales were compared
with a normed sample (as cited in McCubbin et al.,
1996).
Procedures
The research study was approved by a Human Subjects Institutional Review Board at San Jose State University, and written permission was obtained from a
representative of the County Special Education Program. Surveys were sent to selected parents with instructions for the primary caretaker to complete the
questionnaire and return it within 3 weeks. Confidentiality was ensured by the anonymity of the survey
and by aggregating the data. Participation in the study
was voluntary.
Instrumentation
The F-COPES, developed by McCubbin, Olson, and
Larsen in 1981, and the SSI, developed by McCubbin,
Patterson, and Glynn in 1982 (both cited in McCubbin et al., 1996), and a demographic questionnaire
developed by the researcher were the instruments
used. The F-COPES scale features 30 coping strategies
that focus on the two levels of interaction outlined in
the Family Resiliency Model: (a) individual-to-family
systems, and (b) family-to-social environment or ways
in which families externally cope with problems or
demands (McCubbin et al., 1996). The F-COPES scale
rates 30 items on a 5-point Likert scale with responses
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ranging from 1 (strongly disagree) to 5 (strongly agree).

The questions are divided into five subsections: (I) acquiring social support, (II) reframing, (III) seeking spiritual support, (IV) mobilizing family to acquire and
accept help, and (V) passive appraisal (McCubbin et
al., 1996).
The SSI is a 17-item questionnaire that reflects the
degree to which families feel integrated into the community and view the community as a source of social,
emotional, or networking support. The SSI similarly
uses a 5-point Likert scale with responses ranging 1
(strongly disagree) to 5 (strongly agree). Community social support is related to the familys sense of unity
and confidence and serves as a buffer from stress. Social support was a predictor of family resiliency in a
research study of 500 families (McCubbin et al., 1996).
Permission was obtained from Dr. M. McCubbin to use
the SSI and F-COPES scales.
RESULTS
Demographic Data
Table 1 summarizes the responses to the demographic questionnaire. Eighteen of 72 surveys were returned, indicating a 25% response rate. Responses indicated that about three fourths of the children lived
with both parents, and one fourth lived with one parent or divorced parents.
Participants were asked about their ethnic identity.
The Asian and Filipino groups combined made up approximately one third of the total, Hispanic or Latino
families were approximately one third, and Caucasian
and other families were approximately one third. The
ethnic groupings were fairly representative of the multicultural population of the county. Parents were
asked which language was usually spoken in the
home. Of the 11 English-speaking families, 4 were bilingual, with Tagalog (Filipino), Arabic, and Spanish
also spoken in the home. In seven families, Spanish
was the predominant language spoken in the home.
The mean number of children under 18 years of age
per family was 2.3. The number of children with autism in the family was one (n 5 16, or 88%), two (n
5 1, or 6%), and three (n 5 1, or 6%). The mean age
of the children with autism was 8.3 years old. There
are 41 children in the participants families, including
21 children with autism and 20 siblings.
Responses on the demographic questionnaire indicated that significant additional stressors were reported in 50% of the families. Identified stressors were finances and unemployment (n 5 2); father living or
working in another county (n 5 2); chronic health
conditions, such as asthma or diabetes, in the child
with autism (n 5 2); attention deficit hyperactivity
disorder (ADHD) (n 5 1); transportation problems (n
5 1); and recent divorce (n 5 1). Stressors are similarly
present in the normative families, but difficulties are
compounded in families of children with special

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43

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

1997).
Results of F-COPES
The mean total score on the F-COPES for the parents of children with autism was 103.8, as compared
with the normed group mean of 93.1 for men and
95.6 for women (McCubbin et al., 1996). The F-COPES
subscale scores are presented in Figure 1.
Subscale I, Acquiring Social Support, questions how participants acquire support from relatives,
friends, and neighbors. The participants in this study
scored similarly (27.5) to the normed group (27.1).
Subscale II, Reframing, relates to how the family perceives stressful events and their situation. The
participants scored slightly higher (31.3) than the
normed group (30.4). As an example of reframing,
78% agreed or strongly agreed that they defined fam-

Table 1.
18)

Demographic Characteristics of Respondents (N 5

n

Child lives with

Mother
Both parents

Characteristic and Group

4
14

22
78

Type of family
Single parent
Married/couple
Other/extended family

2
14
2

11
78
11

5
5
3
2
1
2

28
28
18
12
6
12

Language usually spoken at home

English or English/bilingual
Spanish
Cantonese
Gujarati (East Indian)

11
4
2
1

61
22
11
6

Estimated yearly family income

Up to $30,000
$30,000$50,000
$50,000$80,000
$80,0001

3
11
1
3

17
62
6
17

Gender of child with autism

Female
Male

4
14

22
78

Other significant stressors in family

Yes
No

9
9

50
50

Parent attended autism support group at

least 1 or 2 times per year
Yes
No
No, but would like to attend

7
8
3

39
44
17

Ethnicity of family
Caucasian
Hispanic
Chinese/Asian
Filipino
East Indian
Decline to state

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

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ily problems in more positive ways to avoid becoming

discouraged.

Although 83% of the sample strongly

agreed with a statement about having
faith in God as a way of coping, fewer
than half coped by attending church
services or activities or sought advice
from a minister.
Subscale III, Seeking Spiritual Support, reflects the familys religious ideology, participation in
organized religious groups, or seeking advice from
clergy. The participants scored lower (14.3) than the
normed group (16.6). Although 83% of the sample
strongly agreed with a statement about having faith
in God as a way of coping, fewer than half coped by
attending church services or activities or sought advice from a minister.
Subscale IV, Mobilizing to Acquire and Accept Help, refers to the familys ability to seek out
community resources, including neighborhood agencies and programs or counseling from health care providers and other professionals (McCubbin et al.,
1996). The participants scored higher (15.6) than the
normed group (12.7) in this subscale. Seventy-one percent of the sample wanted professional counseling for
family difficulties, and 67% sought information from
the family doctor.
Subscale V, Passive Appraisal, refers to accepting problematic issues by reacting less strongly, avoidance, or using passivity as a coping strategy. This type
of response may be based on a familys lack of confidence in their ability to alter outcomes (McCubbin et
al., 1996). Passive appraisal had a mean of 14.6 in this
sample as compared with a mean of 8.5 for a normed
group. An example of passive appraisal was watching
television, which 33% of the sample said they used as
a way to cope. Other examples included relying on
luck, waiting for things to change, or having feelings
of hopelessness.
The SSI scores for the parents of autistic children
resulted in a mean of 45.3 as compared with a mean
of 43.4 for the normed group. The normative group
consisted of 881 women in military families overseas
who were participants in the development of the SSI
scales (McCubbin et al., 1996). Although the normed
group participants were also in a uniquely stressful situation, the parents of children with autism in this
study scored slightly higher in use of social supports
than the normed group. The SSI includes questions on
informal social support from families and communities only, not formal social support by health or educational professionals.
The parents responses to individual questions on

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

the SSI scale were ranked from high to low in terms

of 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 felt
good 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 in
trouble: 50% agreed or strongly agreed.
DISCUSSION
Parent support groups are a means of providing
social support within the framework of the educational or community setting. Approximately half of the
parents indicated they had attended or were interested
in attending an autism support group. Dyson (1997),
in a study of stress and social support for parents of
children with developmental delays, advocated for establishment of community-based support groups.
Support groups benefit parents by giving them a place
to discuss their difficulties, to share coping strategies
and accomplishments, and to meet other parents in a
similar situation. Siblings of the child with autism and
extended family members who share in child care responsibilities can also benefit from support groups.

Support groups benefit parents by giving

them a place to discuss their difficulties,
to share coping strategies and
accomplishments, and to meet other
parents in a similar situation.

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Regarding the use of reframing, the F-COPES subscales (McCubbin et al., 1996) were an indicator of
coping methods used by families in this study. There
have been relatively few studies on coping strategies
other than social support for parents of children with
autism. Reframing as a coping strategy scored highest
of the subscales for the participants and for the
normed group, indicating that the parents outlook or
reframing can be a factor in successful coping. Reframing relates to the familys perception of stressful
experiences (McCubbin et al., 1996). This is consistent
with Tunali and Powers (2002) findings that redefinition of personal and family goals and priorities
helped families cope with autism.
Social support ranked second as a coping method
for families in this study. Many parents had experience obtaining the formal and informal social support
they needed to educate their child. There were individual differences in accessing support services because of difficulties such as inability to speak English,
lack of transportation for parents, and low income levels. Social support has been correlated with improved
coping for parents in a number of research studies
(Dyson, 1997; Hastings & Brown, 2002).

Parenting a child with autism who needs

constant supervision and behavioral
interventions can make it difficult to
participate in a social setting such as a
religious service, which can involve
expectations for certain types of behavior.
Spiritual support was rated lower by the participants in this survey than by those in the normed
group. Many parents in this survey strongly agreed

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45

that belief in God was a way they cope with stress.

However, fewer parents said they participated in structured religious activities or sought counseling from
clergy as a coping strategy as compared with the
normed group. Parenting a child with autism who
needs constant supervision and behavioral interventions can make it difficult to participate in a social
setting such as a religious service, which can involve
expectations for certain types of behavior.
Regarding the Passive Appraisal subscale, the
participants had a higher score for this subscale than
the normed group did. This subscale focuses on inactive or passive behaviors the family may use, such as
avoidance responses based on a lack of confidence in
ability to alter outcomes (McCubbin et al., 1996). In
some cases, families may believe that passive behaviors such as watching television relieve stress. This
finding of higher scores for passive behaviors may
have resulted from severe stressors facing the parents
coping with autism as compared with the normed
group and beliefs that problems associated with the
condition of autism are difficult to change.
The SSI responses were consistently high for social
support from close friends and family members. However, few families relied on neighbors for help and
support. Responses for obtaining help when needed
and feeling comfortable within the community were
variable, ranging from strongly agree to strongly disagree.
These mixed responses about the availability of community support may have resulted from differing cultural and socioeconomic levels of the families and
from differing lengths of time they have resided in the
community or country. Bailey and colleagues (1999)
found that families who were more acculturated into
their communities had higher levels of informal support.
Balancing multiple role responsibilities is a difficult
task for parents, and it has not been examined extensively in research studies in families of children with
special needs, with the exception of role differences
between mothers and fathers (Rousey et al., 1992).
Grandparents and extended family members who
help with child care can be a valuable source of social
support, allowing the parents greater flexibility to
work and meet their familys financial needs. To be
effective in meeting the childs physical and emotional needs, any family caretaker needs to have an understanding of the childs special needs.
Limitations of the Study
The small number of participants was a limitation
that prevents generalization of the results to other settings. The low rate of participation in this study (25%)
may have been partially due to the indirect method
of communication (a letter sent via the teacher) or because parents were busy and forgot to respond. Letters
were sent in September, at the beginning of the school
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year, which may have been a particularly busy time.

Sending a follow-up reminder postcard might have
been helpful to enlist more participants. Another limitation was the use of a convenience sample.
CONCLUSION
Several studies (Gray & Holden, 1992; Hastings &
Brown, 2002; Tunali & Power, 2002) and findings of
this study indicated that families of children with autism face many challenges and stressors. The school
nurse is in a position to identify potential and existing
problems and assist with appropriate interventions.
Assessing the stress levels, coping issues, and social
support of this high-risk group can facilitate more effective interventions. Survey tools for stress and coping such as the SSI and F-COPES have had limited use
in special education settings with parents of autistic
children. Assessment of parental concerns by the
school nurse could help the parents feel more supported. The coping strategies of spiritual support, passive appraisal, and reframing have not been extensively studied in parents of autistic children, especially in
the school setting.
IMPLICATIONS FOR SCHOOL NURSING PRACTICE
This study found that half of the children with autism had coexisting medical conditions such as asthma, diabetes, or ADHD. School nurses are a link between the educational and medical specialties, and a
goal is to be an effective resource to parents and teachers of autistic children. Finding the optimal treatment
approach or interventions for a child with autism can
be complex and often requires a team approach, especially when the child with autism has coexisting
conditions (Tsai, 2001). The school nurse is an integral
part of an educational intervention team. The school
nurse can help parents or caregivers to examine information and make informed decisions about their child
(Cade & Tidwell, 2001).

This study found that half of the children

with autism had coexisting medical
conditions such as asthma, diabetes, or
ADHD. School nurses are a link between
the educational and medical specialties,
and a goal is to be an effective resource
to parents and teachers of autistic
children.
Dyson (1997) advocated for establishing support
groups for fathers and mothers of children with developmental disabilities and stated that social support
should be examined to determine which types of support are most effective. Cade and Tidwell (2001) suggested that school nurses can help parents of children

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with autism develop effective coping strategies. An example is recognizing that the child will make small
steps toward a long-term goal and celebrating progress. These are examples of reframing.
Examples of formal support include two special education teachers who conducted an educational and
informational support group for parents of children
with autism and a support group for Spanish-speaking
parents led by a skilled bilingual teachers assistant.
Child care was provided for the child with autism and
siblings to make it easier for parents to attend. School
nurses can encourage parents to attend autism support
groups available in their community or schools. In addition, school nurses can participate as guest speakers
on related topics within their area of expertise (Cade
& Tidwell, 2001). School nurses, in partnership with
educators, can be instrumental in organizing support
groups if there are none in the school setting.
Another way to support the parents is to use a
screening tool such as the ones used in this study to
determine the parents stress levels or coping skills.
Little (2002) stated that nurses in schools and in the
community are in a prime position to assess the levels of stress on caregiving parents and to address coping strategies. A few questions derived from a tool
such as the F-COPES might be used. A short demographic questionnaire can be modified as an assessment tool to learn more about family structure and
stressors. School nurses should develop cultural sensitivity and awareness, because, as demonstrated by
this study and data from the Autism Society of America (2002), autism is present in many cultures.
The results of this study are important for school
nurses providing services to children with autism and
their families. A component of the school nurse role
is assisting parents to identify and use support services
available through the school, health care providers
and other professionals, and community organizations. Determining access to informal and formal social support and examining coping strategies of parents of autistic children will assist school nurses in
better understanding and meeting their needs.
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M. E., Rodriguez, P., Vazquez-Montilla, E., & Skinner, M.
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Cade, M., & Tidwell, S. (2001). Autism and the school nurse.
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California Department of Developmental Services. (2003). Autism. Retrieved October 26, 2003, from http://www.dds.
cahwnet.gov/autism/autismpmain.cfm

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February 2005
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