RESEARCH

Coping strategies used by parents of children with autism

Richard Twoy, MS, FNP-C (Faculty/Lecturer)1, Phyllis M. Connolly, PhD, APRN-BC, CS (Professor, Graduate
Coordinator of School of Nursing)1, & Jean M. Novak, PhD, CCC-SLP (Faculty)2
1 School of Nursing, San Jose State University, One Washington Square, San Jose, California
2 Kay Armstead Center for Communication Disorders, Speech and Hearing Services, San Jose State University, One Washington Square, San Jose, California

Keywords
Adaptation; ASD; autism; coping; family stress;
resiliency.
Correspondence
Richard Twoy, MS, FNP-C, School of Nursing,
Health Bldg. 419, One Washington Square,
San Jose, CA 95192-0057.
Tel: 408-924-3131; Fax: 408-924-3135;
E-mail: rtwoy@son.sjsu.edu
Received: May 2006; accepted: October 2006
doi:10.1111/j.1745-7599.2007.00222.x

Abstract
Purpose: The purpose of this research was to determine (a) the level of family
adaptation, as measured by the Family Crisis Oriented Personal Evaluation Scales
(F-COPESs) instrument, among persons with a child diagnosed with autism
spectrum disorder (ASD) aged 12 years and under, (b) if there was a difference
in F-COPES scores based on family demographics, and (c) the time lag between
parents suspicion of ASD and the actual professional diagnosis of ASD.
Data sources: A descriptive survey was used with a convenience sample derived
from ASD treatment agencies and a parental support group in the California
Bay Area that supports the children and parents of children with special needs.
Conclusions: Overall, the level of adaptation was within the normal limits with
coping scores similar to the norm scores of the F-COPES with males scoring slightly
higher than females in the coping scale. Subscale scores of the F-COPES indicated
that the parents sought encouragement and support from friends, informal support
from other families who faced similar problems, and formal support from agencies
and programs. Reframing revealed similar results as the norm with less use of
spiritual support, and more passive appraisals were noted from the parents of
children with ASD. Within internal comparisons, there were no statistical differences
among gender and amount of time a member spent in coordination of services.
Comparisons in ethnicity for Caucasians and Asian Americans revealed a higher
coping score for reframing in Asian Americans and a higher passive appraisal score
among Caucasians. Non-English speakers scored higher on spiritual support, while
English speakers scored higher in passive appraisals. Because of insufficient statistical
power, comparisons in education, income, marital status, and relocation of residence
were deferred. The time from parents suspicions of developmental delays or
disability to a professional diagnosis of ASD was at least 6 months or greater.
Implications for practice: It is imperative for nurse practitioners (NPs) to
provide appropriate professional support and other social support systems to
families with children with ASD. Educating parents to sound therapy approaches
to provide them with the skills needed to directly address stressful events in order
to increase the parents confidence level as to avoid passive appraisals is also
a crucial role of the NP. NPs may want to use the F-COPES as part of the assessment
to ascertain the areas of needs of families. This study reveals the resiliency and
highly adaptive nature of these parents who are under severe strain and stress of
caring for a child with ASD. The effective ways they coped as a family were in the
areas of informal and formal social support networks. Participants also used
passive appraisal to cope. The study also supports the need for early recognition
and diagnoses of ASD and referral for early intervention for better outcomes for
the children and families affected by ASD.

Journal of the American Academy of Nurse Practitioners 19 (2007) 251260 2007 The Author(s)
Journal compilation 2007 American Academy of Nurse Practitioners

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Coping strategies used in ASD

Background and the significance of the problem

Autism spectrum disorder (ASD) is the fastest growing
developmental disability. In the pediatric population,
ASDs are more common than are some better known
disorders such as diabetes, Down syndrome, or spina bifida
(Strock, 2004). Today as many as 1.5 million Americans
have some form of autism. The Autism Society of America
(ASA, 2006) estimates that the prevalence of ASD could
reach 4 million Americans in the next decade.
The prevalence of ASD has increased over the past 15
years. A report by the California Department of Developmental Services (DDS) uncovered an increase of 634% in
cases of autism from 1987 to 2002 (DDS, 2003). Furthermore, the Centers for Disease Control and Prevention
(CDC) reported that 1 in 150 8-year-old children in multiple areas of the United States had an ASD (CDC, 2007).
The implication of this sustained increase in the number of
persons with ASD has an enduring impact on the affected
children as well as their families. In an effort to address the
rising cases of ASD, the American Academy of Pediatrics
(AAP) assembled an autism expert panel to evaluate strategies to guide pediatric providers to diagnose ASD early
and improve outcomes for children with ASD with prompt
and intensive intervention. The AAP (2004) adopted the
acronym A.L.A.R.M. (autism is prevalent; listen to the
parents; act early; refer; and monitor) to heighten the pediatric
providers awareness of ASD and to foster earlier referrals.
ASD is a pervasive developmental disorder that is generally recognized and diagnosed between the ages of 18
months and 3 years. ASD is marked by severe deficits in
reciprocal social interactions, imagination, and communication. The individuals have marked delays in both understanding and the use of language (American Psychiatric
Association, 2002). Children with ASD have great difficulties in mastering essential human behaviors, such as
social interactions, the ability to communicate feelings and
ideas, and the establishment of relationships with others.
Autism is on a spectrum of disorders that affects each
individual differently with varying degrees of severity.
No one knows exactly what causes autism; no one knows
the cure for autism.
Researchers are investigating a number of theories on
causes of autism, including the link between hereditary,
genetics, and medical problems (ASA, 2006). Research has
consistently replicated linkage findings on chromosomes
7q, 2q, and 15q (Santangelo & Tsatsanis, 2005). Page (2000)
reviewed evidence for metabolic etiologies in ASD as well
as the relationship between gastrointestinal abnormalities
and ASD. Croonenberghs, Bosmans, Deboutte, Kenis, and
Maes (2002) elucidated the increased production of proinflammatory cytokines that could play a role in the pathophysiology of autism.
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R. Twoy et al.

Children with ASD have a constellation of deficits and

excesses in their behavior. Caring for a child with ASD can
be challenging and extremely demanding in many aspects.
The day-to-day level of stress arising from parenting, the
parents lack of confidence in handling the childs behavior, the lack of supportive services to meet the needs of the
affected child, and the realization that there is no cure for
ASD are but a few of the stressors that are experienced by
the parents. The many demands of the children with ASD
force the family to adapt in order to survive. Coping
strategies are essential for families who are exposed to
stressors arising from a child with ASD.

Purpose
The purpose of this study was to identify the coping
strategies used by families with children with ASD using
the Resiliency Model of Family Stress, Adjustment, and
Adaptation (McCubbin, Thompson, & McCubbin, 2001).
The resiliency model focuses on two levels of interactions:
(a) individual to family systems: ways a family internally
handles problems or difficulties between its members and
(b) family to community: ways in which the family externally handles difficulties or problems through interactions between the family and the community
(McCubbin et al.). Families employ a variety of coping
mechanisms to deal with stress. A study to examine what
forms of coping strategies offer the most positive outcomes
would be helpful and meaningful for parents who are
affected by ASD. The research questions for this study
were
1. What is the level of adaptation among persons with
a child diagnosed with ASD aged 12 years and under?
2. Is there a difference in coping based on demographics of
gender, marital status, ethnicity, English as a second language, income and education, relocation, and/or length of
time in coordination of services?
3. What is the time lag between parents suspicion of ASD
and the actual diagnosis?

Literature review
Families with a child diagnosed as having an ASD are
exposed to stressors from internal sources within the
family and from external sources when advocating for
health and social services and educational services for
the child. The stresses and the challenges of raising a child
with ASD most often are associated with the diagnosis of
ASD, learning to adjust to the childs ritualistic behaviors,
being more involved in education and therapy decision
making, increasing contacts with multidisciplinary

Coping strategies used in ASD

R. Twoy et al.

professionals, scarcity of resources, and purchasing and

using therapeutic or technological supports (Lord &
McGee, 2001).
Parents may find themselves inadequate in dealing with
the behaviors commonly exhibited by children with ASD
(i.e., repetitive behavior, withdrawal behavior, and/or
misbehavior) that make social outings for families with
a child with ASD difficult (Higgins, Bailey, & Pearce, 2005).
The study further described the lack of understanding from
the wider community of behaviors associated with ASD.
Families with children with ASD had restricted level of
contacts with the community because family, friends,
teachers, and the community did not understand the
behavioral characteristics of children with ASD.
Families use a variety of coping strategies in response to
stress. The parents or caregivers use coping strategies to
tolerate and minimize stressful events. Managing the
demands of the stressors is vital because the outcome
can escalate to unmanageable levels or crisis. Recent
studies outlined by Olsson and Hwang (2001) concluded
that mothers of children with autism experienced more
distress than mothers of children with intellectual disabilities without autism. The population studied was at a markedly increased risk for suffering from psychological distress
and depression.
Sivberg (2002) studied strain on the family system
and compared the coping behaviors of parents of children
with ASD to those of parents with non-ASD children. The
results supported the hypothesis that there are differences
in the types of coping behaviors employed. The parents
with a child with ASD scored higher in coping behaviors of
distancing and escape, a behavior aimed at withdrawal
from a stressful situation. The parents in the control group,
in contrast, scored higher in use of self-control, social
support, and problem solving.
The familys perception of stressful experiences also
affects family-coping strategies. The use of reframing as
a coping strategy was elucidated as a possible way of
successful coping (Luther, Canham, & Young-Cureton,
2005). Redefining personal goals and family goals and
priorities, reframing helped the families cope with autism.
Rivers and Stoneman (2003) used family systems theory
to demonstrate that social support could buffer the negative effects of marital stress on the sibling relationship.
The researchers were interested in the effects of marital
stress on the relationship between children with autism
and their typically developing sibling. Accessing social
support, whether formal or informal, is one adaptive
problem-focused coping strategy that served as a powerful
buffer. Under conditions of high marital stress, the families
that actively utilized informal social support (relatives,
friends, and neighbors) illustrated higher quality of sibling
relationship, such as overall happiness having their sibling

as a brother or sister, time spent with the sibling, and how

the siblings got along. Siblings reported positive behaviors
and being satisfied with the relationship with their brother
or sister with autism.
The Internet is increasingly recognized as a source of
social support. In a Swedish study, Sarkadi and Bremberg
(2005) found that the Internet provided general support
for parents in their parenting role. Frequent use of a Swedish parenting Web site in the study correlated with higher
levels of self-esteem. Participants also reported that they
had organized to meet with one another beyond Internet
contact. These characteristics were regarded by the authors
as moving in the positive direction of increased social
capability.
The international study by Svavarsdottir, Rayens, and
McCubbin (2005) examined the predictors of adaptation
in Icelandic and American families of young children
with chronic asthma. Despite the differences in culture
and healthcare accessibility, both groups of fathers indicated that both individual and family strengths (sense of
coherence and family hardiness) contributed directly to
family adaptation. This supports the construct of the
Resiliency Model that family demands and interacting
factors among family members (e.g., cohesion, hardiness,
and family coping skills) and community factors (e.g.,
resources and support) were all found to contribute to
family adaptation.

Theoretical framework
The theoretical framework for this study is the Resiliency Model of Family Stress, Adjustment, and Adaptation
developed by McCubbin and McCubbin (McCubbin et al.,
2001). The resiliency model is a strength-based model
expanded from the family stress theory. The main emphasis of the resiliency model is on family resiliency or their
ability to maintain equilibrium of health in spite of adversity. The resiliency model has been used in many studies of
families stresses, strengths, and outcomes in family life
changes, such as gains and losses, strains and transitions,
and acute and chronic illnesses. The resiliency model
helps to explain ones ability to recover or adjust or even
triumph to stressors arising from life-events and changes
(McCubbin et al.).
According to the resiliency model, the family is faced
with an adjustment phase when a stressor is introduced into the family system. A stressor is a constraining
force or influence placed on the family unit that produces,
or has the potential to produce, changes in the familys
existing equilibrium. A diagnosis of ASD of a child has
the potential to introduce many changes in the family
system. In the adjustment phase, the family is most vulnerable to a crisis situation (maladjustment) because of life
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Coping strategies used in ASD

changes and other stressors (pileup) that may already be

present prior to the diagnosis. Pileups are the sum of
developmental or maturation events (expected) and situational events (unexpected) as well as intrafamily strains
such as poor health status, financial status, or changes in
work environment.
In the adjustment phase, the following variables of the
types of familyregenerative, resilient, balanced, and
rhythmicand their established patterns of functioning,
stressor appraisal, problem-solving and coping abilities,
and family resources interact with one another to shape
the level of adjustment in the family. The many facets of
family typology are based upon specific family strengths
and capabilities. Stressor appraisal is the familys interpretation and definition of the stressor. Families may see the
problem as being minor or major. The familys appraisal
interacts with the familys problem-solving and coping
strategies. Constructive patterns of coping and problem
solving require newly constructed ways of communication
among members of the family as well as organization
and separation of the stressful events into manageable
components.
Family resources are attributes and supports that are
available to the family. The three levels of resources are the
individual, the family unit, and the community. The
individual resource includes the members intelligence
level, knowledge and skills, personality traits, and physical
and emotional health. Family unit resources include organizational and decision-making skills as well as conflict
resolution skills. Community resources are personal support (friends and relatives) and institutional support (religious institutions and healthcare facilities). Families that
show a balance of all these components and the ability to
make minor adjustments and changes in the family system
can achieve positive adjustment (bonadjustment).
In caring for a child with ASD, the familys hardship
created by the disorder (stressor) is more substantial and
demands more substantive changes to the family system.
The stressful factors arising from parenting a child with
ASD are (a) permanency of the condition, (b) the lack of
acceptance of autistic behavior by society and family
members, and (c) the low levels of support provided by
healthcare services and other social services (Sharpley,
Bitsika, & Efremidis, 1997). Unlike other illnesses or
events, autism is not short lived but rather it is a lifetime
of multidimensional issues and demands placed upon the
family. Over time, the adaptation phase follows the adjustment phase (McCubbin & Figley, 1983).
The adaptation phase is a dynamic phase in which
parents struggle to meet the demands of a child with
special needs. Adaptation is the process of accepting the
changes involved with the ASD diagnosis and how the
family functions to meet the needs and the demands
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within the familys values and goals. Because family adaptation is essential to survival, families begin to utilize new
or modified approaches to patterns of functioning, appraisals, problem solving, coping, and resources.
The level of successful adaptation involves both internal family-coping strategies and external family-coping
strategies (Lavee, McCubbin, & Patterson, 1985). Internal
family-coping strategies come from within the family,
such as relationship, cognitive, and communication strategies. The family members become more cohesive and
more reliant on one another. External family-coping strategies come from resources outside of the family. Families
may rely on support from their community, social contacts, or social networks and spiritual support to modulate
their coping. A family that employs both internal and
external levels of interactions will adapt to stressful events
more successfully.

Methodology
Design
The research study was a descriptive survey design based
on a convenience sample. Participants were invited to
complete a 15-question demographic questionnaire and
the Family Crisis Oriented Personal Evaluation Scales
(F-COPESs) (McCubbin et al., 2001). The instrument features 30 coping behavior items, which focus on two levels
of interaction as defined in the family resiliency model:
(a) individual to family systems and (b) family to social
environment. Each respondent completed the questionnaire along with the 30-question Likert-type scale with
responses ranging from 1 (strongly agree) to 5 (strongly
disagree) that explore internal family-coping patterns and
external family-coping patterns. The coping scale is a
reliable and valid tool that measures coping strategies
and level of adaptation. F-COPES has a Cronbachs alpha
reliability of 0.86 and a testretest reliability of 0.81.
The F-COPES further divided coping strategies into five
subscales: (a) acquiring social support, (b) reframing, (c)
seeking spiritual support, (d) mobilizing family to acquire
and accept help, and (e) passive appraisal.

Procedures
Once the Institutional Review Board approval was
received subjects were recruited from a nonprofit parental
support group and various speech-language, occupational,
and behavioral treatment centers in the California Bay
area. A convenience sample of 94 families was identified
by the directors of the agencies. Two questionnaires with
self-addressed prestamped envelopes were given to each

Coping strategies used in ASD

R. Twoy et al.

family in order to increase participation of both mothers

and fathers. The surveys were hand delivered by the
directors or the designee of the agencies to ensure anonymity from the researcher. The participants were allowed
2 weeks to complete the survey.

Results
One hundred and eighty-eight questionnaires were
distributed and 55 were returned indicating a 29%
response rate.

Research question 1
What is the level of family adaptation as measured by the
F-COPES instrument among persons with a child diagnosed with ASD aged 12 years and under?
The mean total scores of the F-COPES for the parents
of children with ASD (N = 55) was 95.64 male (n = 22) and
95.45 female (n = 29) as compared to the norm group mean
of 93.11 male and 95.64 female (see Table 1). The results of
the sampled population showed similar outcomes to previous studies of the authors of the F-COPES instrument
(McCubbin et al., 2001). Despite the difficult situation and
the circumstances of the parents of children with ASD, the
degree of coping paralleled norm groups that have been
studied. Interestingly, the fathers of children with ASD
scored slightly higher (95.64) in the coping scale as compared to the norm (93.11).
The results of the five subscales of coping (Figure 1) for
the participants are as follows:
1. Acquiring social support: It is a measurement of the
participants ability to actively acquire support from relatives, friends, neighbors, and extended family. The results
show that participants scored a mean of 25.06 as compared

with the instruments norm of 27.19. The participants did

not depend on their neighbors but many depended greatly
on their close friends or extended family for assistance. A
large percentage (68%) looked for encouragement and
support from their friends, and many (58%) shared difficulties with their relatives.
2. Reframing: It focuses on the participants ability to
redefine stressful events in order to make them more
manageable. The participants scored similar (29.65) to
the norm group (30.25). Reframing family problems
relates to the familys perceptual orientation toward the
stressful experience or whether the family views the
changes as positive, negative, or more neutral.
3. Seeking spiritual support: It assesses the participants
ability to acquire spiritual support. The participants scored
a lower mean of 10.46 than the compared norm of 16.06.
Although as many as half (47%) of participants reported
having faith in God, many of the participants did not seek
out spiritual/religious leaders or participate in church
services or activities during difficult times.
4. Mobilizing family to acquire and accept help: It evaluates the participants ability to seek out community
resources and accept help from others. The participants
scored higher than the norm group (15.02 vs. 11.96). An
overwhelming 93% of the participants reported that they
sought information and advice from persons in other
families who have faced similar problems, and 80% sought
assistance from community agencies and programs
designed to help families in similar situations. Furthermore, 56% of the participants relied on information and
advice from their physician in mobilizing the family to
acquire and accept help.
5. Passive appraisals: It focuses on appraising problems in
ways of passive or inactive behaviors such as avoidance.

Table 1 Results of F-COPES and comparative data

Group statistics: parents of children with ASD (N = 55)

F-COPES comparative data

Scale

Gender

Mean

SD

Mean

SD

Overall

Male
Female
Male
Female
Male
Female
Male
Female
Male
Female
Male
Female

22
29
22
31
23
31
23
31
23
32
23
31

95.64
95.45
23.95
25.84
30.13
29.29
11.04
10.03
15.04
15.00
15.48
15.29

8.220
12.333
6.129
5.978
4.049
5.628
5.226
4.608
1.637
2.079
2.661
2.710

93.11
95.64
26.51
27.81
30.42
30.41
15.95
16.57
11.82
12.66
8.47
8.19

14.051
13.244
6.453
6.512
4.913
4.863
3.143
2.889
3.276
3.312
2.951
3.059

Subscale 1: Acquiring social support

Subscale 2: Reframing
Subscale 3: Seeking spiritual support
Subscale 4: Mobilizing family to acquire
and accept help
Subscale 5: Passive appraisal

Note. F-COPES comparative data: adapted from McCubbin et al. (2001).

Copyright 2001 by Kamehameha Schools. Adapted with permission of the author.

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R. Twoy et al.

30
25
20
15
10
5
0

Social

Reframe

Spiritual

Mobilize

Passive

Figure 1 Descriptive statistical results of the five subscales.

Note. The parents of children with ASD utilized each coping method to
a greater or lesser extent. The reframing method (29.7) was most followed
by social support (25.1). Spiritual support method was utilized the least
(10.5).

The participants scored much higher as compared to the

norm group with a mean of 15.37 and 8.55, respectively.
This type of coping response may be employed by the
participants lack of confidence in their ability to alter the
outcome as 69% reported watching television during
problematic times and 87% believed that the problems
would go away if they waited long enough.

Research question 2
Further analyses were performed to answer the research
question of whether or not there was a difference in
F-COPES scores based on demographics of gender, ethnicity, English as a second language, length of time individuals spent in coordinating services, marital status,
income, education, and relocation. The only significant
findings related to ethnicity and language.
Ethnicity: An additional analysis was conducted in order
to determine any differences by ethnicity. Independent
t-tests were conducted for Caucasians as compared to Asian
Americans. Results of the t-test indicated two significant
findings for the reframing subscale and passive appraisal

subscale. Asian Americans had higher reframing mean

scores (30.85) as compared to the mean score for Caucasians (26.78). For passive appraisal, Caucasians scored
higher in passive or inactive behaviors (16.29) as compared to Asian Americans score of 14.39 (see Table 2).
English as a second language: In order to determine if language had an effect on how an individual would score on
coping, an independent t-test was performed. It was found
that spiritual support and passive appraisal were statistically significant for individuals who indicated English was
their second language. The mean score for spiritual support
for English as a second language was 11.74 as compared
with English speakers with a score of 9.19. The use of
passive appraisal was higher in English speakers (16.38) as
compared with persons who indicated English as a second
language (14.43) (see Table 3).

Research question 3
What is the time lag between parents suspicion of ASD
and the actual diagnosis? The findings indicated that 91%
of the sample waited no more than a year for a diagnosis.
Closer scrutiny revealed that 66% of the sample indicated
there was at least 6 months time lag from the time that the
parents suspected their child as having developmental
delays or disabilities to the time that their child was professionally diagnosed with ASD. The fact that the sampled
populations are mainly of higher socioeconomic status,
well informed, and college-level educated who reported
the 6 months time lag between the suspicions of ASD and
a professional diagnosis of ASD is of concern.

Demographics
The males and females sampled were 42% and 58%,
respectively, with all respondents reporting that they were
married. The age group of 3150 years made up the
majority of the parents. The race/ethnicity was 51% Asian
Americans, 33% Caucasians, 7% Filipinos, 2% Hispanics,

Table 2 F-COPES comparisons: Caucasians versus Asian Americans

Caucasians (n = 18)

Asian Americans (n = 38)

t-Test for equality of means

Scale

Mean

SD

Mean

SD

Overall
Subscale 1: Acquiring social
support
Subscale 2: Reframing
Subscale 3: Seeking
spiritual support
Subscale 4: Mobilizing family
to acquire and accept help
Subscale 5: Passive appraisal

93.35
26.00

11.494
6.499

94.28
23.46

9.030
5.988

26.78
9.50

5.287
5.742

30.85
10.93

4.249
4.795

14.94

1.697

14.79

1.833

16.29

2.024

14.39

2.897

df

Significance (two tailed)

2.292
1.335

40
42

.772
.189

22.85
2.903

43
43

.007
.372

.29

44

.769

2.37

43

.022

Note. There were a total of 55 parents: Asian Americans comprised Asian Indian, Chinese, Japanese, Korean, and Vietnamese (n = 38); Caucasian (n = 18);
Filipino (n = 4); other (n = 4); Mexican American/Hispanic/Latino (n = 1).

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Table 3 F-COPES comparisons: English as a second language versus English speakers

English as a second
language (n = 28)

English speakers (n = 27)

Scale

Mean

SD

Mean

SD

Overall
Subscale 1: Acquiring
social support
Subscale 2: Reframing
Subscale 3: Seeking
spiritual support
Subscale 4: Mobilizing family
to acquire and accept help
Subscale 5: Passive appraisal

95.92
24.38

10.291
6.394

95.15
25.70

30.26
11.74

3.908
4.494

15.14
14.43

t-Test for equality of means

t

df

Significance (two tailed)

11.18
5.757

.254
2.790

49
51

.800
.433

29.04
9.19

5.893
4.95

.898
1.985

52
52

.373
.052

2.013

14.89

1.783

.495

53

.623

2.937

16.38

1.920

22.873

52

.006

and 7% others. Approximately half the people surveyed

(51%) stated English was a second language. It was noted
that the population sampled had high levels of education
and were high-income earners. Thirty-five percent had
completed 4 years of college, another 40% held a masters
degree, and 13% held a doctoral or a professional degree.
The total household income exceeded $100,000 for 67% of
the households. The employment status of the participants
was as follows: 47% held a full-time job, 27% were
employed part-time, and over 25% were managing the
home. Only 11% surveyed stated that they have relocated
residence to receive better services for their child.
Over half of the participants (54%) indicated they had
spent an estimated $6000 per year of out-of-pocket
expenses for educational/supportive services or treatments for their children. Forty-five percent reported
spending up to 5 h per week, 33% spend at least 11 h
per week, and 22% exceeded 12 h per week on coordinating educational or supportive services, researching and
gathering information, seeking support, consulting with
professionals, and/or advocating for their child.
The mean length of time a child was professionally
diagnosed with ASD and the time the survey was completed by the parents was 43 months. Twenty-one percent
of the parents surveyed reported 11 months or less, 15%
reported 1521 months, 19% reported 3042 months,
29% reported 4869 months, and 17% reported 73112
months since the child was diagnosed and completing
the study survey.

Limitations
One of the limitations of this study was the use of a small
nonrandom sample. The populations surveyed were people receiving treatments or who had some other type of
involvement with the selected agencies. Another limitation noted was that only one measure of coping, the
F-COPES, was used and the study lacked a qualitative
measurement. The common limitations of mailed ques-

tionnaires, another disadvantage, are that the surveys

are self-report, and in this study, there is the possibility
that the mothers and fathers completed the questionnaires
together while comparing and sharing responses. Socially
desirable responses by the participants may also play a role
in the limitations of questionnaires despite anonymity.

Discussion
This study suggests that the parents of children with ASD
are resilient in adapting to the challenges of caring and
raising their child with autism. Using social support systems within the familys social network was a large part of
the external family-coping strategies. Parents indicated
support from close friends and extended families. Parents
sought out close friends to share their concerns. Difficulties
were shared within extended families. The stress for families of children with ASD is considerable and chronic. It is
clear that support for caregivers is essential.
Reframing was evident in the Asian American population as they were able to see the stressor as a fact of life and
were able to define the stressor in a more positive way so
that they could find solutions to the problems and not be
discouraged. The influence of Eastern religious and philosophical beliefs such as Confucianism, Taoism, and Buddhism may have shaped the core values of these Asian
Americans. The values of harmony with nature and interpersonal relationships and family unity may be some of the
factors to hold a more optimistic and positive view of the
stresses of ASD. Maintaining a positive outlook is key in
family resilience.
Although overall F-COPES scores for spiritual support
were reported low for the population, it was reported
higher in the parents with English as a second language
as compared with English speakers. In this study, approximately half the population surveyed believed in God, and
the families indicating that English was a second language
may have found spiritual support as one of the coping
strategies.
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Mobilization of family support was highly utilized as

families struggle to cope, to understand the disorder, and to
seek further information of the disorder. Up to 93% of the
participants indicated they sought information and advice
from persons in other families who faced similar problems.
Acquiring and accepting help from community agencies
and programs designed to help families in similar situations
were resources that 80% of the participants had reported
utilizing. Seeking information and advice from their family
doctor (56%) was also the route of mobilization of families
to obtain help.
The findings of this study suggest that many parents
used passive appraisals as a coping strategy in dealing with
their childs symptoms of ASD. The passive behaviors
reported by parents were based upon their belief that they
did not have the ability to alter the outcomes of the childs
disorder. Fifty-one percent of the parents responded to
the question in the tool that no matter what we do to
prepare, we will have difficulty handling problems, and as
high as 87% responded to another question in the tool
that if we wait long enough, the problem will go away.
Watching television was a coping response for 69% of the
participants, suggesting avoidance or passive behaviors.
Active coping strategies are generally thought to be
more positive ways of dealing with stressful events as an
individual attempts to change the nature of the stressor or
how one perceives the stressor. An avoidant coping strategy, such as passive appraisal, can be a stress-reducing
mechanism in the short run; however, avoiding the problem and not directly addressing the stressful events can be
detrimental, eventually leading to family maladaptations.
The coping style of escapeavoidance corresponds to
increased depression, isolation, and spousal relationship
problems (Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001).

Recommendations
Further study is recommended with a larger random
sample and with different population segments such as
rural settings and/or lower socioeconomic populations.
Also, an addition of a qualitative measurement may increase understanding of how individuals with children
with autism cope.
It is the recommendation of the AAP (2004) not to wait
for a diagnosis of autism but to initiate referrals to early
intervention or to a local school program if autism is
strongly suspected.
AAP (2004) states the following guidelines:
When a parent raises a concern, or a developmental
surveillance/screening indicates a possible delay,
refer the child for a comprehensive evaluation by
a specialist or a team of specialists experienced in
making the diagnosis of autism. At the same time,
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refer the child to a local early intervention program.

A tentative or provisional diagnosis of delay is
sufficient to initiate services. (p. 2)
It is also the recommendation of the AAP (2004) to
make screening and surveillance of ASD an important part
of practice and to listen to the parents and to acknowledge
their concerns as parents generally do give accurate and
quality information and that early signs of autism are often
present before 18 months.
Pediatricians and nurse practitioners (NPs) in pediatric
settings are the most readily identified professionals for
families as they are the experts in child development and
diseases. In addition to offering early recognition and early
interventions for ASD, offering information surrounding
national and regional parent support organizations can be
a great benefit to families.
NPs are in a position to teach families effective ways
of coping as compared to avoidance and escape, which
can be detrimental to the family unit. Providing positive feedback and praise to each family members efforts
and accomplishments will increase his or her efforts
to solve problems as well as promote unity. Facilitating
communication within the family allows its members to
be more open and honest, thus allowing them to share
their thoughts and feelings with each other. Promotion of
normalization encourages families to maintain family
rituals, routines, and outings so as to maintain as much
normalcy without letting the disorder disrupt family life.
NPs may enhance the familys social support system by
orienting family members to the healthcare system and
supporting them to advocate for educational rights
for children with disabilities. NPs can assist families to
make informed healthcare decisions with reliable, evidence-based information on the various interventions
and treatments that are currently available. Impaired
communication is one of the hallmarks of persons afflicted
with ASD. Early interventions in language stimulation by
trained speech-language pathologists (SLP) can improve
outcomes. The pervasive developmental delays of ASD can
affect all areas of the childs functions, such as activities of
daily living, home and school life, and community functioning. Early interventions in occupational therapy (OT)
can result in increased fine motor, gross motor, and
visual perceptual skills. Occupational therapists have
also been successful in identifying and treating sensory
processing disorders or sensory defensiveness noted in
persons with ASD. Parental involvement with the SLP
and OT will allow parents to gain skills in providing
activities that would strengthen neurological development
and improve self-help skills and communication skills
for the child with ASD. Behavioral problems that may
interfere with learning would require behavioral professionals who can develop programs with parents so that

R. Twoy et al.

learning activities and experiences can be successful

(Lord & McGee, 2001).
Assistance for families may be needed in the areas of
transportation, insurance and reimbursement for care,
welfare, and home health care for those with significant
impairments. NPs may also assist the families to accept
respite care and respite hours, which allow families to
regroup or to enjoy time with other siblings or their spouse.
The NP can introduce other experienced families who
may serve as mentors for less experienced families. Last,
literature and Internet resources about ASD, self-help
social groups, and community organizations as well as
national organizations should be provided to the families
from which families can learn more about the disorder
and obtain support.

Conclusions
A thorough assessment of the parents and/or caretakers
should be performed assessing the areas of needs, levels of
interests or readiness, and motivation of the parents or the
caregivers. Interventions are based on the family assessment as it relates to family stressors, appraisal of stressors,
family strengths, coping, and adaptation (Robinson, 1997).
The F-COPES is a reliable and valid tool and should
be given to parents to determine the level of coping and
where interventions might be introduced or increased.
The results of the F-COPES can be helpful to the NPs as
an evaluative tool to measure changes and outcomes of
the NPs care. The tool has limitations that it may not
be congruent with ethnically diverse population. Clinics
or groups in the same setting may purchase a single CD
(McCubbin et al., 2001) and duplicate the measures
for their unlimited clinical and educational (for clinic
purposes) usethe strengths as well as the limitations
of the measures are contained in the CD and should be
consulted for clinical application (Hamilton I. McCubbin,
personal communication, August 21, 2006).
NPs are in an optimal position to help restore the equilibrium and enhance the resilience of the family. By
gaining useful and evidence-based information from the
NPs, families may have more control over their responses
to the stressors. The care provided by the NP will assist
parents to recover and adjust to the stressors arising from
life-events and changes (McCubbin et al., 2001).

References
American Academy of Pediatrics. (2004). Autism A.L.A.R.M.
Retrieved September 5, 2006, from http://www.
medicalhomeinfo.org/health/Autism%20downloads/
autismalarm.pdf

Coping strategies used in ASD

American Psychiatric Association. (2002). DSM-IV-TR: Diagnostic

and statistical manual of mental disorders (4th ed.). Washington,
DC: Author.
Autism Society of America. (2006). Defining autism. Retrieved
March 9, 2007, from http://www.autism-society.org/site/
PageServer?pagename=about_whatis_home
California Department of Developmental Services. (2003).
Autism spectrum disorders: Changes in the California caseload:
An update: 1999 through 2002. Sacramento, CA: Government
publications.
Centers for Disease Control and Prevention. (2004). Autism
spectrum disorders overview. Retrieved March 9, 2007, from
http://www.cdc.gov/ncbddd/autism/overview.htm
Croonenberghs, J., Bosmans, E., Deboutte, D., Kenis, G., &
Maes, M. (2002). Activation of the inflammatory response
system in autism. Neuropsychobiology, 45, 16.
Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S.
(2001). Moderators of stress in parents of children with
autism. Community Mental Health Journal, 37, 3951.
Higgins, D. J., Bailey, S. R., & Pearce, J. C. (2005). Factors
associated with functioning style and coping strategies of
families with a child with an autism spectrum disorder.
Autism, 9, 125137.
Lavee, Y., McCubbin, H., & Patterson, J. (1985). The double
ABCX model of family stress and adaptation. Journal of
Marriage and the Family, 48, 811825.
Lord, C., & McGee, J. P. (Eds.). (2001). Educating children with
autism. Committee on Educational Interventions for Children
with Autism, Division of Behavioral and Social Sciences and
Education, National Research Council. Washington, DC:
National Academy Press.
Luther, E. H., Canham, D. L., & Young-Cureton, V. (2005).
Coping and social support for parents of children with autism.
Journal of School Nursing, 21, 4047.
McCubbin, H. I., & Figley, C. R. (Eds.). (1983). Stress and the
family: Vol. 1. Coping with normative transitions. New York:
Brunner/Mazel.
McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (2001).
Family measures: Stress, coping and resiliency. Inventories for
research and practice [Computer software]. Honolulu, HI:
Kamehameha Schools.
Olsson, M. B., & Hwang, C. P. (2001). Depression in mothers
and fathers of children with intellectual disability. Journal of
Intellectual Disability Research, 45, 535543.
Page, T. (2000). Metabolic approaches to the treatment of
autism spectrum disorders. Journal of Autism and
Developmental Disorders, 30, 463469.
Rivers, J. W., & Stoneman, Z. (2003). Sibling relationships
when a child has autism: Marital stress and support
coping. Journal of Autism and Developmental Disorders, 33,
383394.
Robinson, D. L. (1997). Family stress theory: Implications for
family health. Journal of the American Academy of Nurse
Practitioners, 9, 1723.

259

Coping strategies used in ASD

Santangelo, S., & Tsatsanis, K. (2005). What is known about

autism: Genes, brain, and behavior. American Journal of
Pharmacogenomics, 5(2), 7192.
Sarkadi, A., & Bremberg, S. (2005). Socially unbiased parenting
support on the Internet: A cross-sectional study of users of
a large Swedish parent website. Child: Care, Health and
Development, 31, 4352.
Sharpley, C. F., Bitsika, V., & Efremidis, B. (1997).
Influence of gender, parental health, and perceived
expertise of assistance upon stress, anxiety and
depression among parents of children with autism.
Journal of Intellectual and Developmental Disability, 22,
1928.

260

R. Twoy et al.

Sivberg, B. (2002). Family system and coping behaviors: A

comparison between parents of children with autistic
spectrum disorders and parents with non-autistic children.
Autism, 6, 397409.
Strock, M. (2004). Autism spectrum disorders (pervasive
developmental disorders). Bethesda, MD: National Institute of
Mental Health, National Institutes of Health, U.S. Department
of Health and Human Services. Retrieved September 5, 2006,
from http://www.nimh.nih.gov/publicat/autism.cfm
Svavarsdottir, E. K., Rayens, M. K., & McCubbin, M. A. (2005).
Predictors of adaptation in Icelandic and American families of
young children with chronic asthma. Family Community
Health, 28, 338350.