Research in Autism Spectrum Disorders 3 (2009) 670–684

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Research in Autism Spectrum

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

‘‘My greatest joy and my greatest heart ache:’’ Parents’ own

words on how having a child in the autism spectrum has
affected their lives and their families’ lives
Barbara J. Myers a,*, Virginia H. Mackintosh b, Robin P. Goin-Kochel c
a
Department of Psychology, Virginia Commonwealth University, Box 842018, 806 W. Franklin Street, Richmond,
VA 23284-2018, United States
b
University of Mary Washington, United States
c
Baylor College of Medicine, United States

A R T I C L E I N F O A B S T R A C T

Article history: Parents of children in the autism spectrum wrote an open-ended

Received 27 August 2008 answer via an online questionnaire to the question, ‘‘How has your
Accepted 11 January 2009 child in the autism spectrum affected your life and your family’s
life?’’ (N = 493). Using a qualitative content analysis, 15 negative
Keywords: themes and 9 positive themes were identified. Themes are
Parent subsumed into five clusters: Stress; Child’s behavior; Parents’
Family personal well being, work, and marital relationship; Impact on the
Qualitative method
whole family; and Social isolation. The mix of negative and positive
Themes
themes is interpreted as a dialectical viewpoint of finding positive
Online questionnaire
meaning to life even while acknowledging the stress and difficulties
of having a child with autism.
ß 2009 Elsevier Ltd. All rights reserved.

Raising a child with autism is stressful for parents and families. This is not news, as virtually every
study that asks the question has verified it is so (Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001;
Hastings & Johnson, 2001; Koegel et al., 1992; Konstantareas & Homatidis, 1989; Montes &
Halterman, 2007; Pisula, 2007; Yamada et al., 2007). Moreover, parents of children with autism have
the dubious distinction of experiencing a higher level of stress than parents whose children have
other disabilities (Eisenhower, Baker, & Blacher, 2005; Mugno, Ruta, D’Arrigo, & Mazzone, 2007;

* Corresponding author. Tel.: +1 804 828 6752; fax: +1 804 828 2237.
E-mail address: [email protected] (B.J. Myers).

1750-9467/$ – see front matter ß 2009 Elsevier Ltd. All rights reserved.
doi:10.1016/j.rasd.2009.01.004
 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684 671

Pisula, 2007). Parental stress associated with raising children in the autism spectrum has been found
in numerous studies in the US, the UK, and around the world—in Italy (Mugno et al., 2007), Poland
(Pisula, 2007), Japan (Yamada et al., 2007), and Sweden (Allik, Larsson, & Smedge, 2006; Olsson &
Hwang, 2001), as well as for Latino families in the US (Blacher & McIntyre, 2006). The stress is present
across children’s ages, from toddlerhood through middle childhood, adolescence, and into
adulthood.
As in any transactional process (Sameroff & Chandler, 1975), the stress of rearing children with
autism comes from a variety of factors acting and interacting at the same time. The severity of the
child’s impairment plays a role, such that parents whose children are more severely impaired report
more stress (Bebko, Konstantareas, & Springer, 1987; Freeman, Perry, & Factor, 1991; Hastings &
Johnson, 2001; Kasari & Sigman, 1997; Konstantareas & Homatidis, 1989; Szatmari, Archer, Fisman, &
Steiner, 1994; Tobing & Glenwick, 2002). At the same time, parents’ own stress and tension can
escalate the situation in a bidirectional way and make things worse (Lecavalier, Leone, & Wiltz, 2006).
This stress wears on parents. Mothers, in particular, have repeatedly been found to have poorer mental
health, poorer physical health, and lower quality of life when they are parenting a child in the autism
spectrum as compared with mothers raising typically developing children or children with other
health or developmental impairments (Allik et al., 2006; Bromley, Hare, Davison, & Emerson, 2004;
Hastings et al., 2005; Herring et al., 2006; Mugno et al., 2007; Olsson & Hwang, 2001; Schwichtenberg
& Poehlmann, 2007).
In addition to having difficulties in social interactions and communication, children in the
autism spectrum often exhibit behaviors that are disruptive and hard to manage, and this can
create chaos throughout the household and extended family. It can leave parents feeling locked at
home, as they fear taking the child out in public lest he create a scene or run into danger.
Accordingly, these problematic behaviors are a major source of stress for parents (Allik et al.,
2006; Blacher & McIntyre, 2006; Bromley et al., 2004; Eisenhower et al., 2005; Hastings, 2003;
Hastings et al., 2005; Herring et al., 2006; Kersh, Hedvat, Hauser-Cram, & Warfield, 2006;
Konstantareas & Homatidis, 1989; Lecavalier et al., 2006; Matson & Nebel-Schwalm, 2007).
Longitudinal studies suggest that the emotional and behavioral problems of children with an
autism spectrum disorder (ASD) are stable across years (Eisenhower et al., 2005; Herring et al.,
2006; Lecavalier et al., 2006), which is discouraging news for parents whose children are hard to
manage. There is little research on training parents in how to manage challenging behavior
(Matson & LoVullo, 2008), though there is emerging evidence that limit setting may be a key
variable in reducing behavior problems in children with ASD and relieving stress in their parents
(Osborne, McHugh, Saunders, & Reed, 2008).
Even as they deal with the challenges of raising their children with autism, parents and other
family members may come to see their situation in a positive way. They may come to view having a
child with autism as a life-changing experience that prompts them to examine their belief systems,
values, and priorities, resulting in a new way of seeing their lives (Gray, 2006; Green, 2007; Hastings &
Taunt, 2002; King et al., 2006). Often, spiritual lives deepen (Gray, 2006; Hastings & Taunt, 2002;
Poston & Turnbull, 2004; Scorgie & Sobsey, 2000), and parents report coming to a sense of coherence
and control through changes in their world views (King et al., 2006). For example, Tunali and Power
(2002) found the highest levels of life satisfaction among mothers who had lessened their emphasis on
career success and learned to disregard others’ opinions of their child’s behavior.
Knowing that raising a child in the autism spectrum is stressful does not tell us how and why that
is so; it leaves out most of the daily details, as well as parents’ views of the big picture. Nor does
knowing that parents find positive aspects of having a child with autism tell us specifically the
meaning they have made of their situation or how they view their child and family in an uplifted way.
Further, present studies have queried parents about how they feel, but less is known about how
autism is affecting everyone in the family and the functioning of the family as a whole. The purpose of
the present study was to listen to parents’ own words on how raising a child with autism affected
their lives and the lives of their families. We gathered these perspectives from a large sample of
English-speaking parents of children and adolescents in the autism spectrum and employed a
qualitative content analysis to gain a deeper and more detailed picture of the themes raised by
parents.
672 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684

1. Method

1.1. Participants

Participants were 493 parents1 (92.2% mothers) of children (80% boys) with autistic spectrum
disorders and specifically diagnosed2 with autism (n = 295, 59.8%), Asperger syndrome (n = 116,
23.5%), or PDD-NOS (n = 82, 16.6%). The children averaged 8.6 years and were primarily between 3 and
11 years old (75%). Just 3 children were younger than 2 years, and 12 individuals were age 18–21
years. Most children were white/Caucasian (86.7%), with 6.2% biracial; 2% black/African American;
2.2% Hispanic; and 2.8% Asian, Native American, or children of other races/ethnicities.
Most parents were married (79.6%), while 9.2% were divorced and 9% were separated, single, or
widowed. They ranged in age from 22 to 72 years (M = 38, SD = 7). Respondents had an average of 15.2
years of education (SD = 2.4), with 1% having less than high school, 14.2% high school, 40.7% partial
college, 17.1% bachelor’s degree, and 20% graduate/professional education. Families’ annual incomes
were reported in U.S. dollars as follows: less than $10,000 (n = 10, 2%); from $10,000 to $25,000 (n = 56,
12%); $25,000 to $40,000 (n = 82, 16.4%); $40,000 to $55,000 (n = 69, 13.8%); $55,000 to $70,000
(n = 80, 16.2%); $70,000 to $100,000 (n = 87, 17.6%); and more than $100,000 (n = 85, 17.2%). Some
participants did not answer specific demographic questions. The families represented almost all states
in the U.S. (77%), as well as Canada, Australia, New Zealand, England, and Ireland (international
participants equal 18% of sample); 5% did not report their locale.

1.2. Instrument

Data were collected through a web-based questionnaire using the Inquisite program. The
questionnaire followed Dillman’s (2000) recommendations regarding simplicity of web-based
questions and question formats. This paper reports on one item from a larger survey that entailed over
100 closed-ended and short-answer questions and 7 open-ended questions. A detailed explanation of
the entire instrument is available in Goin-Kochel and Myers (2005). The question addressed here is,
‘‘How has your child in the autism spectrum affected your life and your family’s life?’’

1.3. Procedure

More than 220 autism-related organizations in the U.S. and 7 other English-speaking countries
were contacted electronically or by letter and asked to disseminate information about the study. Many
organizations provided direct electronic links to the study webpage, while others informed parent
members via email and paper newsletters. Parent participants went to the website and answered a
variety of questions about their children. Confidential submission of the questionnaire constituted
informed consent. All data were screened for potential false respondents or repeat reporters; none
occurred. The study protocol was approved by the university IRB. Families received no payment or
other benefit through taking part in the study.

1.3.1. Qualitative coding

The primary coder (BJM) made the initial ratings, and the second (VHM) and third (RPG) coders
each reviewed and coded half the transcripts. Questions among coders were resolved by discussion.
All three coders read the full set of transcripts and came to agreement on the final themes, clusters, and
placement of phrases.
At a first coding level, the entire statement from each participant was rated for tone: positive,
negative, mixed (elements of both negative and positive feeling), or unclear (neither positive nor
negative).

1
The original sample included 531 respondents. Inclusionary criteria were that participants were in a parental role, their
child was diagnosed in the autism spectrum, the child was no older than 21 years, and that the parent provided an answer to this
question.
2
Diagnosis was provided by parent report. We did not independently diagnose the children, review their charts, or contact
their health care providers. We report on who diagnosed the child in Goin-Kochel and Myers (2005).
 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684 673

Parents’ written responses were coded inductively for themes (Miles & Huberman, 1994). Starting
with a set of tentative themes, these themes were refined, collapsed, expanded, added to, and
redefined until they adequately captured the full breadth of the data (Taylor & Bogdan, 1998). Once the
themes were agreed upon, phrases and statements were sorted into the themes. This process
sometimes entailed refining or adding to the themes again and again. A single phrase could fit into just
one theme or into multiple themes. The number of statements fitting each theme was tallied. Finally,
the themes were organized into higher-order clusters that captured the larger meaning of a group of
themes.

2. Results

2.1. Length of responses

Parents responded to the question, ‘‘How has your child in the autism spectrum affected your life and
your family’s life?’’ and they were free to write as much or as little as they wished.3 Some parents’
responses were brief, only a few words or a short sentence. Most of these short responses expressed
distress: ‘‘ruined it;’’ ‘‘‘what life, dismal future im so unhappy;’’ ‘‘stressful. my son has required my
undivided attention for the past 19 years;’’ ‘‘It has made our life very stressful and difficult;’’ ‘‘fianacial
challanges and limited activities.’’ A few of the short responses gave a positive message: ‘‘he is a blessing!
A gift from god! helps everyone in our home spiritually!’’ while others provided a mixed message of both
difficulty and gains: ‘‘Has put some stress on us, but has made us better because of it.’’ Most answers were
a paragraph of 50–100 words. Other parents wrote a detailed essay about how their child had impacted
life in the family. The longest answer was 533 words, or 1 1/2 pages double-spaced.

2.2. Overall tone

The tone of the complete statement from each participant was rated as positive, negative, or mixed.
See Fig. 1. All but 16 (3%) of the statements could be rated on tone; these are marked on the figure as
‘‘unclear.’’ The largest number of statements (n = 237, 48%) had a negative tone throughout. In these
answers, everything in the parents’ statements depicted a negative impact that the child with ASD had
had on the parent or family. These responses most often showed pain and distress. They tell of the
impact on the parent, the marriage, the siblings, and the family’s relationships, both within the family
and with the outside world. For example:
I had to quit my job due to an inability to find child care. My younger kids imitate his behavior.
Our house is very loud all the time people my son screams all the time! We have not gone on a
date in over 2 years.
Statements rated as mixed made specific mention of both negative and positive aspects of life with
their child in the autism spectrum. More than a third of parents (n = 194, 39%) offered statements that
were mixed. These statements mentioned both problems (e.g., financial pressures, safety issues,
dealing with child’s obsessions) and specific joys (e.g., deepened faith, increased patience). An
example:
He has given my life so much happiness, because I love him no matter what’s wrong. But also
has given me so much fear. He has no sense of danger, and I’m terrified he’ll run in the road or
get lost. I am the only one that really can give all the energy and patience it takes to take care of
him. I am exhausted. The special diet is exhausting. I can’t work because of this so we’re
extremely bad off financially.
About one parent in 10 (n = 46) gave a response that was completely positive in tone. These
responses spoke of how the child had made the parent a better person and of appreciation for the
unusual features of their child’s behavior. For example:

3
All quotations from parents are unedited. We left all typos, spelling errors, and grammatical errors as written by
participants, except that answers written in ALL CAPS were changed to upper and lowercase.
674 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684

Fig. 1. Overall tone of parents’ statements (N = 493).

My son has so enriched my life that it is unbelievable. I have learned so much about living life
fully, about God and the nature of man, about love. It hasn’t been easy all the time, but I would
not trade the experience for anything. I think regular kids are boring. You don’t have to try to
read their minds, expressions or mannerisms. I love him better than life itself.
2.3. Themes and clusters

The themes divided naturally into negative and positive, with 15 themes that are negative and 9
that are positive. We organized the themes into 5 clusters: (1) Stress; (2) Child’s behavior and
demands of care and therapy; (3) Impact on parents’ personal well being, work lives, and marital
relationship; (4) Impact on the family as a whole, including siblings and extended family; and (5)
Social isolation. The clusters and themes, and the number of participants endorsing each theme, are
shown in Table 1. Discussion of each theme in the text that follows is arranged in order of their
frequency in parental accounts.

2.3.1. Cluster 1: Stress

The cluster ‘‘Stress’’ contained only the single theme of stress; it is the only cluster with just one
theme. Stress was the most-frequent theme that arose in parents’ accounts of how their child in the
spectrum affected them and their families. Over 70% (n = 350, 71%) of the parents’ statements
expressed stress. Some of these (n = 62) specifically used the word ‘‘stress’’ or ‘‘stressful’’: ‘‘The stress is
constant – there is very little respite from it.’’ For others, the stress was inherent to their answer.
Parents spoke of marital strain, the burden of constant care and supervision, school struggles,
challenging behaviors, not being able to go anywhere, and disrupted family life. They used painful
phrases such as ‘‘living nightmare,’’ ‘‘pressure cooker,’’ and ‘‘my daughter is a constant burden.’’ One
mother summed up the stress in her life in this way:
My life is very closed, not a lot of people can deal with my son or are comfortable around him. I
can’t take him a lot of places because of crowds and noise, so we spend a lot of time at home or
grandparents house. His biological father left when he was 3 and has contact maybe twice a year
with his son. Has really limited a lot of things in our family.
There was no clear counter-example of stress. No parent specifically said, for example, ‘no stress for
us.’ A balance to the stress-filled statements, however, comes from the 29% of statements that relayed
no feeling of stress, such as, ‘‘Has made us better people, taught my to appreciate the small steps and
has made has sibling more open to accept all people,’’ or the few that were neutral: ‘‘No different than
any other household with 3 kids. They all need a little something different.’’
 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684 675

Table 1
Clusters and themes derived from parents’ qualitative responses (N = 493) to the question, ‘‘How has your child in the autism
spectrum affected your life and your family’s life,’’ and number of responses fitting each theme.
CLUSTER 1—Stress
Negative themes n
Stress 350
(No positive themes in the Stress cluster)

CLUSTER 2—Child’s behavior and demands of care and therapy

Negative themes n
Difficulty dealing with child’s behavior problems 48
Time demands for care and therapies 45
Sleep problems, exhaustion 31
Struggles with schools and services 28
Positive themes
New understanding regarding world of disabilities 19
Glad for child’s autism, uniqueness, would not change it if we could 12

CLUSTER 3—Impact on parents’ personal well being, work lives, and marital relationship
Negative themes n
Marital/couple strain (including divorce and separation) 75
Difficult emotions: grief, depression, guilt, blame 44
Mother’s or Father’s career or employment affected in negative way 36
Positive themes
Enriched our lives, a blessing, love for this child 50
Positive emotions: taught us compassion, tolerance, patience, joy 42
Learned to appreciate the little things, slow down 39
Spiritual life enriched 16
Marriage enriched 8

CLUSTER 4—Impact on the family as a whole, including siblings and extended family
Negative themes n
Siblings neglected, embarrassed, or hurt 73
Financial strain 48
Center of our lives, changed everything (negative tone) 46
Strained relations with extended family 16
Positive themes
Positive family adjustment and support 21
Positive impact on siblings 18

CLUSTER 5—Social isolation

Negative themes n
Restrictions on where we can go and what we can do 67
Lost friends, no social life 43
Bad treatment by strangers and others 11
(No positive themes in the Social Isolation cluster)

2.3.2. Cluster 2: The child’s behavior and the demands of the child’s therapy and care
The four negative themes in this cluster are (1) Difficulty dealing with child’s behavior problems;
(2) Time demands for care and therapies; (3) Sleep problems, exhaustion; and (4) Struggles with
schools and services. The two positive themes are (1) New understanding regarding the world of
disabilities; and (2) Glad for child’s autism, uniqueness would not change.

2.3.2.1. Difficulty dealing with child’s behavior problems. Parents wrote of their difficulty in dealing
with their children’s behavior in a variety of situations and settings. One parent wrote, ‘‘Difficult no
matter where we go. We have difficulty on trips, in the car, at home, in the morning, after school. . .
basically it is the whole day.’’ Another wrote simply, ‘‘We are ruled by his fixations and behaviors.’’ One
mother wrote that it was harder when her son was younger and, ‘‘. . . could go 3 days without sleep,
fecal smeared, didn’t speak, screamed for his every demand to be met and destroyed anything in his
path.’’ Another mother wrote of her concern about her son as he grew older, saying she was, ‘‘. . . living
in fear that he will either take his own life or lose it with his poor judgement.’’
676 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684

Many spoke of specific challenging behaviors, especially the disruption that came from their child’s
tantrums and screaming. One wrote, ‘‘Because of our son’s temper tantrums and high pitched
screaming at times, we rarely go out or take him to restaurants.’’ Aggressive behavior was a serious
concern: ‘‘Recent problems with aggression requiring hospitalization have been devastating.’’ Another
parent wrote, ‘‘She can become violent. . . I’ve had to have police involvement many times as she has
physically assulted my now 5-year-old several times and myself.’’ Parents told of their children
escaping or getting into things they should not. ‘‘I can’t take him out in public by myself because he
escapes and runs away and I can’t catch him. He has to be watched 24 h a day which can be very
stressful.’’ And to protect another child, ‘‘At home, we have to keep everything locked – especially the
bathrooms and doors going outside the house. This makes it just difficult for everyone.’’

2.3.2.2. Time demands for care and therapies. Parents told us that their children require a tremendous
amount of time and energy and that this had changed life for everyone in the family. Some referred
specifically to therapy. One mother wrote, ‘‘Our days consist of therapy, sensory integration, auditory
treatments. PT, OT and ST;’’ and another, ‘‘Our entire lives have been devoted to him and his
therapies—we do very little else.’’ Many listed how many therapies they juggled for their child, with
therapists coming into the house or parents transporting the child to appointments. Other parents
spoke of the time demands of everyday care: ‘‘My son needs constant supervision and care;’’ and from
another, ‘‘She has to be supervised every minute of the day.’’

2.3.2.3. Sleep problems, exhaustion. Parents wrote that their children get little sleep: ‘‘Not sleeping
more than an hour or two some night,’’ and that their children’s wakefulness kept them from getting
enough sleep: ‘‘He doesn’t sleep well and so I don’t get sleep.’’ Siblings’ sleep was disrupted as well as
parents’ sleep. The sleep issues sometimes kept husbands and wives from sleeping together. ‘‘He will
not sleep alone, so we never have a chance to sleep together.’’ Parents were exhausted from both the
sleep deprivation and the demands of care, and this affected their own well being: ‘‘my health has
declined drastically in the past 5 years from exhaustion.’’ A tired mother wrote,
We are always tired from chasing G around the house trying to avert disasters. My house is
always a mess, I don’t even let anyone ever come over because I am too embarassed about the
way it looks. We are just too tired to do anything about it.

2.3.2.4. Struggles with schools and services. Parents expressed anger and frustration with schools,
restricted insurance coverage, and the lack of community services. They disliked the services they
were getting and struggled to get the services they wanted. One parent wrote, ‘‘We never wanted to
send him to public school since we think most of them STINK!! but we have no choice since our
insurance will not pay for private therapists and we cannot afford to pay them ourselves.’’ Many
parents wrote of dreading the phone calls from school about their children’s behavior problems. One
parent addressed all of these in her statement:
Public school has been a nightmare. We have had to fight for everything we’ve gotten for him.
We have paid thousands of dollars for outside speech and psychological counseling, and
tutoring which was not covered by insurance. I was called nearly every day by the school
because of behavior issues. It drove us to the brink of emotional breakdown.
Some parents moved to a new city or state to get desired services for their child: ‘‘We are currently
in the process of moving to another city so she can have access to therapy services that are not
available where we live now.’’

2.3.2.5. New understanding regarding the world of disabilities. This positive theme captured how
parents’ eyes had been opened to people and issues that they had not known existed, for example: ‘‘It
has also helped me to become more aware of people with special needs, and more sensitive to them.’’
Parents reported becoming advocates for people with disabilities: ‘‘I have become an advocate not
only for my child, but for the other parents who have children with disabilities (not just those with
autism). I have become an active participant in system reform in our community.’’ Some parents spoke
 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684 677

of doing volunteer work and others of changing their careers to focus on disabilities: ‘‘I am now in
school to become a special education teacher.’’

2.3.2.6. Glad for child’s autism, uniqueness would not change. A small number of parents spoke about
feeling happy with their children’s special differences. Part of their message was one of loving the child
exactly as he is, noting his or her purity, sweetness, and uniqueness. One parent noted, ‘‘His perception
is so very different, complex, interesting and many times quite funny.’’ What made these answers
stand out was their clear message that they would not want for their child to not be in the autism
spectrum. One mother wrote, ‘‘I love my child as he is and take great exception to those who want to
cure autism.’’

2.3.3. Cluster 3: Impact on parents’ personal well being, work lives, and marital relationship
This cluster is depicted by three negative and five positive themes. The three negative themes are (1)
Marital or couple strain; (2) Difficult emotions: Grief, depression, guilt, blame; and (3) Mother’s and/or
father’s career/employment affected. The five positive themes are (1) Enriched our lives, a blessing, love
for this child; (2) Positive emotions: taught us compassion, tolerance, patience, joy; (3) Learned to
appreciate the little things, slow down; (4) Spiritual life enriched; and (5) Marriage enriched.

2.3.3.1. Marital or couple strain. Parents spoke of how their child had ‘‘put a huge strain on the
marriage,’’ that they had ‘‘no privacy,’’ and that they argue about the child (e.g., ‘‘We argue more, snap
at each other more’’). Some mothers said the father was in denial about the child’s autism: ‘‘My
husband has been in denial much of our son’s life and not very available to his needs.’’ Wives wrote
that they did not have enough time with their husbands, either because of the demands of caring for
the child (‘‘He needs constant supervision, we do not have a normal life – marriage is strained – no
time together as a couple, need respite care’’) or because the husband avoids coming home (‘‘My
husband experiences cycles where he actually avoids us and our home’’). One-third of the respondents
in this theme said specifically that conflict about the child led to their divorce: ‘‘Husband took off due
to stress;’’ and, ‘‘The incredible needs posed by this child cause my marriage to fail.’’

2.3.3.2. Difficult emotions: grief, depression, guilt, blame. Parents spoke of their grief, despair, sadness,
and guilt regarding their children’s autism. One wrote: ‘‘I am often depressed, stressed, and grieve the
child that I once imagined;’’ and from another, ‘‘left me totally burned out, depressed, guilty, and
overwhelmed.’’ Some were so depressed they had considered suicide: ‘‘I was so tired and so sad. I just
wanted to die. I became very suicidal. I received counseling and used perscription medicine as an
intervention.’’ Another shared, ‘‘I sunk into a deep state of depression and anorexia, and on some days
wanted to take my own life.’’ Many wrote about depression, either directly (‘‘It is a great heartache for
us and both my wife and I are fighting a constant battle with depression’’) or indirectly (‘‘There is no
pain like this one’’). Several had been hospitalized for panic attacks and depression, and many
mentioned taking medications for depression: ‘‘The first 18 months after we first realised he was
autistic were very difficult. I had severe depression and received several periods of counselling. I am
still taking anti-depressants.’’

2.3.3.3. Mother’s and/or father’s career/employment affected. This theme concerned the job and career
adjustments families made that were specific to caring for their child. Parents wrote about how one
parent, usually the mother, had left a job to care for the child (e.g., ‘‘I quit my job to stay home to be
with her’’) or curtailed their own education (‘‘I quit school to devote more time to the children’’). Some
said that the working parent had to increase the work hours in order to generate enough income. For
example, ‘‘I dropped to part-time employment, which placed financial hardships on our family and
caused my husband to have to maintain four different jobs (1 full time and 3 part-time).’’ The career
limitations meant financial problems for families.
I used to have a career, this became impossible and even thought I earned the larger paycheck, I
quit working to take care of C. Our family has taken a huge hit financially, we may never be able
to own our own home, at least not in the next 5–10 years.
678 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684

Several parents wrote of career disruptions but then noted it was worth it: ‘‘I left my job for 6
months to do ABA, set up a program, trained my therapists, we went into over 70k of debt, never
regretted it.’’

2.3.3.4. Enriched our lives, a blessing, love for this child. These statements reflected a positive impact
that the child with autism had had on parents’ personal well being. Many parents spoke of the love
they felt for their child with autism. ‘‘There is no greater love than what I have for my son.’’ They used
endearing terms for their child, including ‘‘my angel,’’ ‘‘my sunshine,’’ ‘‘a wonderful little guy,’’ ‘‘an
inspiration,’’ and ‘‘a gift.’’ Some spoke in terms of the blessing of raising this child: ‘‘For his father and
myself he is a blessing and we couldn’t love him more;’’ and, ‘‘I feel a very strong blessing in having
been given our son. He is truly unique and his smiles and (now) kisses are so sweet because we have
waited so long to receive them.’’ Some said they could not imagine their lives without this child: ‘‘He
keeps me going there is never a dull moment I couldn’t see my life without him, he makes you laugh,
cry, feel happy, and everyday is a new accomplishment.’’ These messages sometimes had a sense of
‘‘even though’’ or ‘‘in spite of’’ the challenges. For example, ‘‘He has given my life so much happiness,
because I love him no matter what’s wrong.’’

2.3.3.5. Positive emotions: taught us compassion, tolerance, patience, joy. The name of this theme
captures the kinds of emotions parents said they had learned from parenting their children. Added
to this list could be humility, understanding, endurance, empathy, and resilience, determination,
and unconditional love—all terms that parents used. Their statements expressed that their child
had given them the opportunity to change themselves for the better: ‘‘I feel priviledged that my
son is autistic because it has opened up a whole new world and made me look at everything so
differently.’’

2.3.3.6. Learned to appreciate the little things, slow down. In this theme, more than one parent used the
phrase, ‘‘We don’t sweat the small stuff.’’ Some spoke of this lightly: ‘‘How to laugh at simple things.’’
Others spoke of what they learned from going more slowly: ‘‘We have learned to slow down and take
each day as it comes. . . We learned to not take things for granted.’’ Some were grateful to have left the
‘‘rat race’’ of busyness, career, and material possessions: ‘‘Without him, I could see us getting caught
up in the materialistic day to day grind – very empty path.’’ They were able to ‘‘appreciate each
milestone,’’ and to ‘‘slow down and lead a calmer lifestyle.’’ This parent captured the realignment of
priorities that her son had brought to the family:
He has made us ‘see the light’ and reprioritize. Things we used to think were important are no
longer important. Our goals are no longer career oriented. We enjoy life a little more. Our
biggest priorities are being happy, having fun, and doing what ever it takes to make sure that E
will be a self happy and sufficient adult.

2.3.3.7. Spiritual life enriched. Virtually every mention of spiritual life was a positive statement of the
spiritual meaning that parents had drawn from having a child with autism. Some felt that God had sent
this special child to them: ‘‘We prayed for a miracle and God gave us our little boy;’’ and, from another
family, ‘‘Both my husband and I believe there is a reason that God brought him to us.’’ Some wrote that
God helped them in meeting this child’s needs: ‘‘I tell myself, and my other son, that God doesn’t make
mistakes, and He will give us the strength and knowledge to deal with it.’’ Others felt that raising this
child had enriched their spiritual lives in general: ‘‘I have learned so much about living life fully, about
God and the nature of man, about love.’’

2.3.3.8. Marriage enriched. Finally, a small number of parents in this cluster wrote positively about
their marriages. Some spoke of their marriage being tested but strengthened: ‘‘My husband and I have
had a tough patch of it, but we’re much better and our family is very happy.’’ Others were simply
positive about how they worked together with their spouses: ‘‘Having two boys with autism was
never in my thoughts before becoming a parent, but it sure has taught me about unconditional love,
and it has made my marriage stronger than any marriage I know.’’
 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684 679

2.3.4. Cluster 4: Impact on the family as a whole, including siblings and extended family
Parents spoke of a multitude of ways in which having a child with autism had impacted the whole
family. The four negative themes in this cluster capture the (1) Effects on siblings, (2) Financial strain,
the feeling that autism became the (3) Center of their lives, and (4) Strained relations with extended
family members. The two positive themes were counterparts to these themes, with other families
saying positive things about family adjustment and on the siblings.

2.3.4.1. Siblings neglected, embarrassed, or hurt. Concern about negative impact on their other children
was the third-most frequent theme in parents’ responses across the entire set of responses, with
messages of this kind from 73 families. Parents worried that the siblings missed out on a fair share of
time and attention: ‘‘I feel a lot of times his older brother gets the short end of the stick yet I dont know
how to make it right and I dont think I can ever do so.’’ Siblings had to curtail their own activities or
sporting events: ‘‘We often have to tell our other son, ‘no, because of brother’, about a wide variety of
things, what he can or cannot have, where we can or cannot go.’’ Some spoke of how hard it was for the
sibling to understand: ‘‘It’s hard for my daughter to understand why she has a brother and sister with
autism.’’ Many said that the siblings were embarrassed by the child with autism: ‘‘He is a source of
embarrassment for my older son.’’
Siblings also had to deal with being tormented, their things being broken, and with physical
aggression: ‘‘He is very destructive and many times mean to his younger sibling.’’ One mother
summed it up in this way:
I have 3 other children who are often embarrassed by their brother and often hear others
laughing at him. It is difficult to go anywhere as a family. His brothers have no privacy, have had
many of their possessions broken, have been physically hurt by their brother, and, of course,
must ‘stand in line’ for their needs.

2.3.4.2. Financial strain. Parents told about their struggles dealing with the costs for therapies, special
schools, and special diets; many met these increased needs with just one income. ‘‘Financially, it is a
great struggle for us. Only one income with many supplements to purchase and tests to have
performed that are not covered by insurance.’’ One parent estimated spending, ‘‘. . . over $500,000 in
needed therapies, treatments, evalautions, medications, and learning programs.’’ Many had changed
their daily lives: ‘‘Autism has ruined us financially and has changed everything we do on a daily basis.’’
They were frustrated that insurance would not cover the costs of treatments. Some spoke of using up
all their savings and their retirement funds as well as going into debt. One parent wrote,
Financially we are in terrible shape. All of our savings are spent and we are thousands of dollars
in debt. I have not been able to go back to work, and all his therapies cost a lot of money and
insurance doesn’t cover them.

Despite these financial strains, some added the message, ‘‘It is worth every penny.’’

2.3.4.3. Center of our lives. The title for this theme came from a parent’s own words: ‘‘Helping him to
get over, or to cope with his Autism is the center of our lives.’’ Parents said that their family
relationships, their daily routines, their ability to go out, and their planning for the future were all
affected by their child’s disorder. Their households revolved around the child with autism: ‘‘It has
totally changed everything. Our entire lives revolve around autism now.’’ Their statements were
direct: ‘‘Horribly, every minute is spent figuring out how to help him. It is a struggle to fit in other day
to day,’’ and, ‘‘we have no life, our independance has been taken away,’’ and from another, ‘‘She
became the center of my existence.’’ One parent’s statement captured many of these limitations:
Change the course of our lives. Limits our social, educational, recreational and spiritual lives.
The center of our lives became autism and whatever it allows you to do. Your freedom to decide
the course of your life is taken away.
Parents wrote about issues that showed up in other themes – dealing with challenging behavior,
restrictions on going out, the demands of therapy – but what distinguished statements in this theme
680 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684

was the message that autism had overtaken everything in the family’s life. For example, ‘‘Every
conceivable aspect of my life and the lives of our immediate family has been impacted by autism. This
includes our choices in careers, geographic location, living arrangements, & day-to-day activities.’’

2.3.4.4. Strained relations with extended family. For many families, having a child with autism resulted
in difficulties with relatives. Some expressed that their extended family did not believe the child’s
diagnosis: ‘‘My father (76) lives in constant denial, always saying to me, ‘He’ll come right one day!’ or
‘One day he’ll probably just snap out of it’ or similar words.’’ This was often linked to relatives’ beliefs
that the child was just misbehaving (e.g., ‘‘Her illness has caused many rows with in the family as they
doubt the diagnosis and just think she’s in need of a smack’’). Some relatives blamed the parent for
causing the child’s disorder (e.g., ‘‘My family turned against me, and has made it clear that they believe
that I caused my son’s autism,’’) while others believed the parents were practicing bad parenting (e.g.,
‘‘There was considerable strife with relatives who expressed the view that our son was merely spoiled
and that we were inadequate parents’’). Parents were hurt that their child was not welcome at family
gatherings: ‘‘My son has also been snubbed by other members of our family, who have kids the same
age as he is. He doesn’t get invited over to play at their houses, or to their birthday parties.’’

2.3.4.5. Positive family adjustment and support. Statements fitting with this theme expressed that
having a child with autism actually made their family stronger: ‘‘Our child has enriched our life and our
family. We are thrilled he is part of us.’’ Some spoke of the support and the practical help they received
from extended family members: ‘‘It has brought our family closer as we all try to work with ways to help
him.’’ Some said they felt closer to their extended families: ‘‘I think I am closer to the rest of my family
(mom, dad, sisters) because of J, it has pulled us together as a family to create a unit that my son can count
on.’’ A father observed: ‘‘My wife and I hold a stronger bond to keeping the family together.’’

2.3.4.6. Positive impact on siblings. As with the aforementioned theme, a small but notable number of
statements described the favorable influence of children in the autism spectrum on their siblings.
Parents whose comments fit this theme said their other children had become more sensitive,
compassionate, and humble as a result of having a sister or brother with autism. Many spoke of the
siblings’ love for this child (e.g., ‘‘They also love their brother very much’’). Parents said that the
siblings had an increased understanding of people with differences: ‘‘They are more tolerant and
understanding of other people with disabilities.’’

2.3.5. Cluster 5: Social isolation

The three themes in this cluster all spoke in a negative way of how parents’ and families’ lives had
been restricted and their social contacts reduced. There was no positive counterpart to these themes.
No families said that their social lives had been expanded, with the exception of a few who said they
had gotten to know other families with children with disabilities (e.g., ‘‘Have met a lot of great
people’’).

2.3.5.1. Restrictions on where we can go and what we can do. In this theme, parents told of being unable
to take vacations, visit relatives, or go to cultural events, as well as restrictions on everyday
experiences like going to the grocery, church, shopping malls, and restaurant meals. A mother wrote,
‘‘We pretty much stay at home, there is no eating out at resturants, no family vacations, very few
family ‘outings.’’’ And another said, ‘‘There are some things that we do not even attempt. . . We do not
go to the movies, mall, shopping, parades, basketball/football games because it is too much for D.’’
Many said that they did not go out because their child might have outbursts. For example, ‘‘We
couldn’t go places or do things because he would scream,’’ and from another, ‘‘We do not take him
anywhere becuase he seems to throw fits no matter where we go.’’ A frequently mentioned problem
was that the family could not attend an event together:
My husband, my older son and I never do anything together. One of us (my husband or I) stays
home with our son with autism – we do not travel as a family, we do not celebrate holidays with
extended family, etc.
 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684 681

There was a sense of overall isolation. ‘‘We go nowhere, or do anything social. Church is even a
difficult outing anymore.’’

2.3.5.2. Lost friends, no social life. Parents wrote about losing their friends (e.g., ‘‘Since my son’s
diagnose a lot of so-called friends decided to ignore us,’’ and, ‘‘Has severly effected our social life. When
our son was young he was very hard to handle. We lost most of our friends’’). They felt they could not
take their child to friends’ houses (‘‘We don’t visit many people nor do many visit us because of his
behavior’’), nor could they go out as a couple (‘‘We have no social life together because it is hard to find
someone to look after him’’). One parent wrote simply, ‘‘People do not welcome us in their homes or do
not want to go out with us.’’

2.3.5.3. Bad treatment by strangers. A small number of parents told us their children were stared at (‘‘I
get angry and depressed about the way that strangers stare at her sometimes in public’’) and laughed
at (‘‘In church others have made fun of my son, both adults and children’’). This caused
embarrassment:
I have been very embarrassed in public over my sons behavior to the point where I wished I had
a sign on my back that said ‘‘don’t worry this is normal. my son is autistic.’’ I have heard all the
remarks, I have sensed the animosity from acquaintances and strangers.

One mother’s reaction to the bad treatment was pride in her child: ‘‘I admire the way my daughter
gets up in the morning and faces a world that often mocks her, rejects her, belittles her but I also wish
we could celebrate excellence instead of just striving for normalcy.’’ Another noted that she had
stopped minding: ‘‘It was hard at first with people’s stares and comments out in public but that doesn’t
bother me anymore.’’

3. Discussion

The responses that poured in from nearly 500 parents across the United States and five other
countries provided a chance to hear what a wide sampling of families had to say about their life at
home with a child in the autism spectrum. Their essays went beyond check-mark survey answers
and spoke in particulars. Their answers were blunt and real. They vented, and they gave thanks. It
was a rich – and often painful – experience reading their answers to the simple question, ‘‘How
has your child in the autism spectrum affected your life and your family’s life?’’ Their responses
were coded into 15 negative themes and 9 positive themes that were subsumed into five clusters.
With 24 themes – and each of the themes capturing dozens of personal stories – it is clear that
there is no single or simple answer to our question. One mother answered wryly, ‘‘How long have
you got.?’’
It must be noted that parents were not presented with these themes and the chance to vote yes or
no on each one. Rather, the themes were drawn from what parents spontaneously offered. The relative
ranking of themes might have been very different if they were offered as a list rather than an open-
ended question. It is likely, for example, that more parents would have endorsed ‘‘difficulty dealing
with child’s behavior problems,’’ or ‘‘financial strain,’’ or ‘‘enriched our lives’’ if those had been posed
as specific questions. But the tallying-up of how many parents fit each theme is not the point of a
qualitative analysis. Rather, this paper’s contribution comes in the individual accounts that parents
offered of what was going on in their families.
Parents had more to say about the difficult parts than the positive aspects of raising their children.
While many studies have confirmed that parents of children in the autism spectrum suffer from stress,
the parents here said how and when and where that stress comes about. From our viewpoint, the
deepest distress was expressed by the 46 parents whose statements fit the theme ‘‘Center of our lives.’’
Each spoke in a personal way of how life was turned ‘‘upside down’’ when autism came to their family:
‘‘Your freedom to decide the course of your life is taken away;’’ and, ‘‘All the plans and dreams we had
for the future have gone;’’ and, ‘‘I have been consumed by his autism. I have spent my life trying to ‘fix’
his problems and make his life better. I have read and advocated and searched until I have no brains
left.’’ It is tempting to list each and every one of those statements; they are chilling.
682 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684

3.1. Finding positive meaning in the face of autism

One father in our study observed there are two paths that families can take, saying, ‘‘Autism does
one of two things, it drives families apart, or makes them stronger.’’ We had evidence of both. There
was plenty of evidence of the stressors – the money problems, social isolation, dealing with tantrums,
struggles with schools – but for many parents, there was clear mention of the positive meaning they
had found. The positive themes that emerged give hope that families do find their way and make sense
out of what life has given them.
Meaning-making is a central aspect of coping with adversity (Frankl, 1984). A search for meaning
has been found to aid the coping of families faced with medical challenges and disabilities of various
kinds. Huws, Jones, and Ingledew (2001) found that meaning-making was a central topic among
parents of children with autism who belonged to an email support group. Scorgie and Sobsey (2000)
identified what they called ‘‘transformations’’ or life-changing experiences of parents of children with
disabilities. Another group of parents reported new perspectives on life, increased sensitivity, support
for each other, opportunities to learn, improved family dynamics, increased confidence and
assertiveness, and strengthened religious faith when they were specifically asked to name positive
aspects of having children with disabilities (Hastings & Taunt, 2002). Parents of children with Asperger
syndrome spoke of changes in their life priorities, growth in faith/spirituality, and growth in areas
such as patience and self-control (Pakenham, Sofronoff, & Samios, 2004). After examining open-ended
answers from 175 parents of children with autism, Bayat (2007) concluded that resilient families are
the ones who make meaning out of adversity. They had learned important lessons, including a shift in
the meaning of life, making positive meaning of disability, becoming united and closer as a family,
coming to appreciate small things, and experiencing a spiritual awakening or strengthening—lessons
that came through in the positive themes of our parents’ words.
Larson (1998) provides insight regarding how parents of children with disabilities can speak at one
moment about their unspeakable depression and despair and in the next moment celebrate how
wonderful their child is. In her case studies of six Mexican-origin mothers of children with disabilities,
she reported that the mothers embraced contradictory emotions: they felt grief and joy, hope and fear,
acceptance and despair. All of them wished for miraculous cures, that their child would be normal,
while at the same time expressing a deep love for the children just as they were. Larson interprets this
as ‘‘embracing the paradox.’’ The paradox was the tension between their child’s current circumstances
and their hope and desire for a better future. It provided positive energy for the mothers’ work on
behalf of their children. This energy could be ‘‘crashed’’ in an instant, though, by the many obstacles
they met in trying to realize their ‘‘positive illusions’’ of recovery.
This combination of contradictory points of view emerged in many of our participants’ accounts. It
would be hard for an outsider to see how a parent could begin, ‘‘Taking him into many public places is a
challenge and we have a lot of stress due to difficult or aggresive behaviors,’’ and then finish the
sentence by saying, ‘‘but (we) love him and cannot imagine life without him.’’ This apparent mismatch
makes sense to the parents who provided such accounts, for in their daily lives they bring these two
sides together by ‘‘embracing the paradox,’’ in Larson’s terms. This is a dialectical viewpoint, one that
sees development as consisting of continuing changes along multiple dimensions at the same time. A
dialectical theorist would add that it is when this balance or synchrony breaks down, when two
sequences are in conflict, that development actually moves forward (Riegel, 1976). In this case, there is
a dynamic interplay between experiencing the impossibly difficult demands of parenting a child with
autism and loving that child no matter what.

3.2. Limitations

Participation in this study was accessible only to parents who used the internet. These data were
collected in 2002–2004. At the time of the 2000 U.S. census, 67% of homes with a school-aged child had
a computer and 53% of homes had Internet access. These figures vary across race, however, with
African American and Hispanic families having less access to the internet than European American or
Asian American families (Newburger, 2001). Accordingly, there is an under-representation of lower
income parents and of ethnic minority parents in our sample. In addition, we targeted families
 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684 683

through autism organizations and recruited through those organizations’ websites and newsletters.
Families not connected with such an organization were not likely to know about the study and so their
viewpoints are not included.
There are advantages, though, to collecting data in this way. It makes it possible to find hard-to-
reach participants and gives them the convenience of participating at their own pace and convenience.
Web-based questionnaire results have been found to be consistent with results from traditional
survey methods (Gosling, Vazire, Srivastava, & John, 2004).

3.3. Conclusions

Parents offered in-depth responses to how their child in the autism spectrum had affected their
own and their families’ lives. About half had a completely negative tone, about a third had a mixed
tone that was both positive and negative, and 10% offered only positive comments. The responses of
over 70% expressed stress. Five clusters emerged, and these were Stress; Child’s behavior and demands
of care and therapy; Impact on parents’ personal well being, work lives, and marital relationship;
Impact on the family as a whole, including siblings and extended family; and Social isolation. There
were 15 negative themes. Choosing one theme from each cluster, these included stress; difficulty
dealing with child’s behavior problems; marital/couple strain; siblings neglected, embarrassed, or
hurt; and restrictions on where we can go and what we can do. There were 9 positive themes, and
again choosing one from each cluster, these included new understanding regarding the world of
disabilities; enriched our lives, a blessing, love for this child; and positive family adjustment and
support. The mix of negative and positive themes are interpreted in light of a dialectical viewpoint of
finding positive meaning to life even while acknowledging the difficulties of having a child in the
autism spectrum.

References

Allik, H., Larsson, J. O., & Smedge, H. (2006). Health-related quality of life in parents of school-age children with Asperger Syndrome or
High-Functioning Autism. Health and Quality of Life Outcomes, 4, 1.
Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability, 51, 702–714.
Bebko, J. M., Konstantareas, M. M., & Springer, J. (1987). Parent and professional evaluations of stress associated with characteristics
of autism. Journal of Autism and Developmental Disabilities, 17, 565–576.
Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability:
Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184–198.
Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: Social
support, mental health status and satisfaction with services. Autism, 8, 409–423.
Dillman, D. A. (2000). Mail and internet surveys: The tailored design method (2nd ed.). New York, NY: John Wiley & Sons Inc.
Dunn, M. E., Burbine, T., Bowers, C. E., & Tantleff-Dunn, S. (2001). Moderators of stress in parents of children with autism. Community
Mental Health Journal, 37, 39–52.
Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preschool children with intellectual disability: Syndrome specificity, behaviour
problems, and maternal well-being. Journal of Intellectual Disability Research, 49, 657–671.
Frankl, V. E. (1984). Man’s search for meaning (3rd ed.). New York: Simon & Schuster.
Freeman, N. L., Perry, A., & Factor, D. (1991). Child behaviours as stressors: Replicating and extending the use of the CARS as a measure
of stress: A research note. Journal of Child Psychology and Psychiatry and Allied Disciplines, 32, 1025–1030.
Goin-Kochel, R. P., & Myers, B. J. (2005). The congenital vs. regressive onset of autism and parents’ beliefs about causes. Focus on
Autism and Other Developmental Disabilities, 20, 169–179.
Gosling, S. D., Vazire, S., Srivastava, S., & John, O. (2004). Should we trust Web-based studies? A comparative analysis of six
preconceptions about Internet questionnaires. The American Psychologist, 59, 93–104.
Gray, D. E. (2006). Coping over time: The parents of children with autism. Journal of Intellectual Disability Research, 50, 970–976.
Green, S. E. (2007). We’re tired, not sad: Benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64, 150–
163.
Hastings, R. P. (2003). Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children
with autism. Journal of Intellectual Disability Research, 47, 231–237.
Hastings, R. P., & Johnson, E. (2001). Stress in UK families conducting intensive home-based behavioral intervention for their young
child with autism. Journal of Autism and Developmental Disorders, 31, 327–336.
Hastings, R. P., Kovshoff, H., Ward, N. J., Espinosa, F. D., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive
perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35, 635–
644.
Hastings, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on
Mental Retardation, 107, 116–127.
Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive
developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of
Intellectual Disability Research, 50, 874–882.
684 B.J. Myers et al. / Research in Autism Spectrum Disorders 3 (2009) 670–684

Huws, J. C., Jones, R. S. P., & Ingledew, D. K. (2001). Parents of children with autism using an email group: A grounded theory study.
Journal of Health Psychology, 6, 569–584.
Kasari, C., & Sigman, M. (1997). Linking parental perceptions to interactions in young children with autism. Journal of Autism and
Developmental Disorders, 27, 39–57.
Kersh, J., Hedvat, T. T., Hauser-Cram, P., & Warfield, M. E. (2006). The contribution of marital quality to the well-being of parents of
children with developmental disabilities. Journal of Intellectual Disability Research, 50, 883–893.
King, G. A., Zwaigenbaum, L., King, S., Baxter, D., Rosenbaum, P., & Bates, A. (2006). A qualitative investigation of changes in the belief
systems of families of children with autism or Down syndrome. Child: Care, Health, and Development, 32, 353–369.
Koegel, R. L., Schreibman, L., Los, L. M., Dirlich-Wilhelm, H., Dunlap, G., Robbins, F. R., et al. (1992). Consistent stress profiles in
mothers of children with autism. Journal of Autism and Developmental Disorders, 22, 205–216.
Konstantareas, M. M., & Homatidis, S. (1989). Assessing child symptom severity and stress in parents of autistic children. Journal of
Child Psychology and Psychiatry, 30, 459–470.
Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism
spectrum disorders. Journal of Intellectual Disability Research, 50, 172–183.
Larson, E. (1998). Reframing the meaning of disability to families: The embrace of paradox. Social Science & Medicine, 47, 865–875.
Matson, J. L., & Nebel-Schwalm, M. (2007). Assessing challenging behaviors in children with autism spectrum disorders: A review.
Research in Developmental Disabilities, 28, 567–579.
Matson, J. L., & LoVullo, S. F. (2008). Trends and topics in autism spectrum disorders research. Research in Autism Spectrum Disorders,
doi:10.1016/j.rasd.2008.06.005.
Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook (2nd ed.). Thousand Oaks, CA: Sage
Publication.
Montes, G., & Halterman, J. S. (2007). Psychological functioning and coping among mothers of children with autism: A population-
based study. Pediatrics, 5, 1040–1046.
Mugno, D, Ruta, L., D’Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with
pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22.
Newburger, E. C. (2001). Home computers and Internet use in the United States: August 2000. Washington, DC: US Department of
Commerce US Census Bureau.
Olsson, M. B., & Hwang, C. P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual
Disability Research, 45, 535–543.
Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). Research in Autism Spectrum Disorders, 2, 249–263.
Pakenham, K. I., Sofronoff, K., & Samios, C. (2004). Finding meaning in parenting a child with Asperger syndrome: Correlates of sense
making and benefit finding. Research in Developmental Disabilities, 25, 245–264.
Pisula, E. (2007). A comparative study of stress profiles in mothers of children with autism and those of children with Down’s
Syndrome. Journal of Applied Research in Intellectual Disabilities, 20, 274–278.
Poston, D. J., & Turnbull, A. P. (2004). Role of spirituality and religion in family quality of life for families of children with disabilities.
Education and Training in Developmental Disabilities, 39, 95–108.
Riegel, K. F. (1976). The dialectics of human development. American Psychologist, 31, 689–700.
Sameroff, A. J., & Chandler, M. J. (1975). Reproductive risk and the continuum of caretaking casualty. In Horowitz, F. D. (Ed.). Review of
child development research. vol. 3 (pp.187–244). Chicago: Univ. of Chicago Press .
Schwichtenberg, A. J., & Poehlmann, J. (2007). Applied behaviour analysis: Does intervention intensity relate to family stressors and
maternal well-being? Journal of Intellectual Disability Research, 51, 598–605.
Scorgie, K., & Sobsey, D. (2000). Transformational outcomes associated with parenting children who have disabilities. Mental
Retardation, 38, 195–206.
Szatmari, P., Archer, L., Fisman, S., & Steiner, D. L. (1994). Parent and teacher agreement in the assessment of pervasive developmental
disorders. Journal of Autism and Developmental Disorders, 24, 703–717.
Taylor, S. J., & Bogdan, R. (1998). Introduction to qualitative research methods: A guidebook and resource (3rd ed.). New York: John Wiley
& Sons Inc.
Tobing, L. E., & Glenwick, D. S. (2002). Relations of the childhood autism rating scale-parent version to diagnosis, stress, and age.
Research in Developmental Disabilities, 23, 211–223.
Tunali, B., & Power, T. G. (2002). Coping by redefinition: Cognitive appraisals in mothers of children with autism and children without
autism. Journal of Autism and Developmental Disorders, 32, 25–34.
Yamada, A., Suzuki, M., Kato, M., Suzuki, M., Tanaka, S., Shindo, T., et al. (2007). Emotional distress and its correlates among parents of
children with pervasive developmental disorders. Psychiatry and Clinical Neurosciences, 61, 651–657.