Running head: ASD

Autism Spectrum Disorder

James Madison University
Megan Mosier, Liz Mott, Rebecca Sopelak

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Introduction

The prevalence of children with Autism Spectrum Disorder has been climbing with 1 in 68
children diagnosed with Autism Spectrum Disorder in 2010 compared to 1 in 150 children in
2000. Autism Spectrum Disorder is a mental disorder characterized by deficits in social
interactions and communication and a narrow range of interests and activities, accompanied by
an impairment in functioning (American Psychiatric Association, 2013). The individual with
autism isnt the only one who is impacted by the disorder, the family unit, specifically parents
and siblings, is affected as well. Their lives are forever changed and it is important to be aware of
the challenges families with a member with autism face. These changes vary from the day-to-day
level, like adjustments in schedule or routines, to changes in how the family unit and individuals
function. Parents of children with autism display increased stress levels, typically developing
siblings have to take on more responsibilities than their peers, and the child with autism faces
numerous barriers in their ability to attain quality services and an education.
With the prevalence of Autism Spectrum Disorder growing in the United States it
essential that as professionals we become educated on this disorder and the impact it has not only
on the child, but on the family unit. We need to know how to not only treat the child with autism
and their family, but also understand what each individual member is experiencing. In an
analysis of Autism Spectrum Disorder and the effects on the family, we will present findings
from published studies, the literature, and multiple sources of media to discuss the major
concerns of parental stress, sibling relationships, and the effects of Autism Spectrum Disorder on
the child. We will then explain the relevance of the ABCX model theory, and will conclude with
implications for nursing, clinical psychology, and special education practice.

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Parental Stress
Based on numerous studies, having a child with a disability is a significant familial

experience. In an analysis of parental stress in families of children with autism, I will present
findings from the literature to discuss major concerns of stress levels, factors and categories of
stress, and crisis in families.
Levels of Stress
There are higher levels of parental stress reported in families who have a child with
autism than in families of children who are typically developing (Hayes & Watson, 2013). There
are also differences in parental stress levels of parents who have a child with autism, and parents
who have a child with another disability (Hayes & Watson, 2013). Higher levels of stress are
reported in parents who have a child with autism in comparison to parents of children with
another disability (Hayes & Watson, 2013). In one study, higher amounts of stressors were
demonstrated in families of children with autism than in the comparison group families of
parents without autism and parents of families with a child with ADHD (Miranda, Tarraga,
Fernandez, Colomer, & Pastor, 2015). Despite previous hypotheses, there are not any differences
present between maternal and paternal stress levels (McStay, Trembath, & Dissanayake, 2014).
Although stress levels tend to be generally high, parents of children with autism seem to
exhibit less resentment towards their child with autism than parents of children with ADHD, and
parents of children with both autism and ADHD (Miranda et al, 2015). This is likely due to the
fact that parents of children with autism view their childs behavior as out of the childs control
(Miranda et al, 2015). A lower level of resentment has also shown to lead to decreased stress
levels and increased parent-child relationships (Miranda et al 2015).

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Factors/Categories of Stress and Crisis

Some of the main factors affecting parental stress are a childs externalizing behaviors, a
parent being less able to see stressors the family is facing as challenging, and lower levels of a
family sense of coherence (FSOC) (McStay et al, 2014). Further, there are three categories of
stressors that parents identify as major contributors to their stress levels. These areas include
restriction in personal freedom due to their parental role, frustration in maintaining personal
identity apart from identity of their child and parental role, and their parental role and life role
being controlled by their childs needs (Miranda et al, 2015). The categories identified are quite
interesting because they seem to also be relevant for any parent, including those of children
whom are typically developing. It is likely that these stressors can describe parents in general,
but that they are enhanced and intensified as a result of having a child with autism.
From these stressors, a family may be led into crisis. For many families of children with
autism, crisis can be characterized by factors influencing four major areas: demands, internal
capabilities, external resources, and subjective appraisal (Weiss, Wingsiong, & Lunsky, 2014).
Demands are any issue that a family has to address which may become a stressor. Examples of
demands are socioeconomic stresses, family problems, health problems, a childs behavior, and
school support. Internal capabilities are the ability to cope with a given situation. External
resources refer to means such as social support, finances, and resources provided to the family.
Finally, subjective appraisal is how challenges the family is facing are perceived by an
individual. In other words, it is how a family copes (Weiss et al, 2014). An imbalance in any of
these four areas can lead a family into crisis (Weiss et al, 2014).

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Crisis in Families
The most commonly occurring characteristic for families of children with autism of all
ages which leads families into crisis is demands (Weiss et al, 2014). As previously described
demands can be anything that a family faces which may become a stressor. A very common
demand which can lead a family into crisis is financial difficulties. Mothers of children with
autism allocate most of their time working with services to help their child. As a result, little time
is spent in their career or leisure activities (Hodgetts, McConnell, Zwaigenbaum, & Nicholas,
2014). Caregivers often have to stop working to care for their child with autism (Saunders et al,
2015). However, families with a dual diagnosis of autism and an intellectual disability are more
likely to have a parent stop working than families of children with autism only, or children whom
are typically developing (Saunders et al, 2015). Services that children with autism need can
create a great deal of financial and employment difficulties. Such difficulties can be a great
source of stress especially if the impact is large (Saunders et al, 2015).
The second most common characteristic of crisis for families differs in terms of the age of the
child with autism. For children under the age of thirteen it is external resources, and for children
older than thirteen it is internal capabilities (Weiss et al, 2014).
To promote family adaptation a familys sense of cohesion, and coping strategies should
be targeted for intervention. Family Quality of Life (FQoL) measures show to be higher when
there are less externalizing child behaviors and greater levels of family sense of coherence
(FSOC) and coping (McStay et al, 2014). Additionally, many of the services described currently
only target the individual with autism, not the family as a whole unit (Hodgetts et al, 2014). This
is an area of concern when considering family cohesion because family sense of coherence levels
correlate with higher measures of Family Quality of Life (FQoL). Since having a child with

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autism can create a negative financial impact, it is important for parental stress levels to be
monitored in order to promote effective family functioning and success (Saunders et al, 2015).
Sibling Relationships
Numerous studies have investigated the sibling relationship when one sibling has Autism
Spectrum Disorder. We will present the findings from published studies to discuss the major
concerns regarding the quality of the sibling relationship, the impact on the child without autism,
and how the relationship develops over the lifespan.
Quality of Relationship
A main focus of research regarding siblings with autism is if the quality of the
relationship is not as good compared to siblings where neither child has Autism Spectrum
Disorder. When interviewing children with a sibling with autism 95.5% of children stated that
their relationship with their brother or sister was good (Stampoltzia, Defingou, Antonopoulou,
Kouvava, & Polychronopoulou, 2014). Similarly it was found that there were no significant
differences in the quality of the sibling relationships if there was a child with autism compared to
siblings in which neither child has autism (Walton & Ingersoll, 2015). Although there were no
overall differences between the two groups the researchers did find that the siblings with a
member who had autism differed in a few areas. Siblings with autism were less aggressive
toward their sibling and tended to be less involved with them (Walton & Ingersoll, 2015).
Researchers have found that although the quality of the relationship among siblings
where one sibling has autism is no worse or better when compared to typically developing
siblings there are factors that can negatively impact the relationship (Hasting & Petalas, 2014). A
major factor that can add strain on the sibling relationship is the number of behavior problems
that the sibling with autism has. The more behavior problems that they have the greater the

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sibling relationship is negatively impacted. The siblings where there were more behavioral
problems tended to have more conflicts with one another and were not as close with one another
than siblings who had autism but few to no behavioral issues (Hasting & Petalas, 2014).
Although the overall quality of the relationship does not differ it is important to pay attention to
issues like behavioral problems that can negatively impact the relationship among siblings.
The Impact on the Child Without Autism
Growing up with a sibling who has autism can be chaotic for many children, but it can
also impact some childrens development. Brothers of children with Autism Spectrum Disorder
have been found more at risk for hyperactivity and difficulty with peer relationships (Walton &
Ingersoll, 2015). A main concern regarding development of the sibling of a child with autism is
impairments to social skills and peer group acceptance. Studies have found that a few siblings
have emotional or behavioral issues. Siblings also tended to be unsatisfied regarding peer
acceptance skills and friendships (Stampoltzia et al, 2014). Research has also found that typically
developing siblings experience loneliness, alienation and peer difficulties more than other
children their age (Hastings, 2003). These findings suggest that these siblings may have
difficulty making and maintaining friendships. On average 86% of children reported that their
friends were aware of their siblings condition and 86% also reported that their friends came over
to play at their houses (Stampoltzia, et al, 2014). This suggested that the majority of friends of
the typically developing sibling do not have issues with their friends sibling having autism.
Although unaffected siblings believed that they had poor peer acceptance skills and friendships
they seemed to have friends who werent concerned about the fact that their sibling has autism.
Many researchers are concerned with the negative impacts growing up with a sibling with
autism can cause there are many benefits for these siblings. Due of the added household duties

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many children developed a sense of responsibility, were more mature than their peers and had
better school adjustment. Growing up with a sibling with autism also resulting in children being
more tolerant, understanding, compassionate, and patient than their peers (Stampoltzia et al,
2014). There are some negative impacts on children who have a sibling with autism, but most of
these impacts are minor and can be addressed with therapy and there are far more good impacts
that outweigh the bad.
Sibling Relationship over the Lifetime
Having a sibling with autism is a lifelong process and the relationship evolves, as the
siblings grow older. One study interviewed adults who had siblings with autism about their
sibling relationships and lives growing up and their sibling relationships as adults (Tozer &
Atkin, 2015). The researchers found that many of the siblings described their childhoods as
chaotic because of their sibling with autism. They often had to make numerous adjustments in
their day-to-day lives to accommodate for their brother or sister. The siblings also said they had
to take on more responsibilities to adjust for the hectic lifestyle (Tozer & Atkin, 2015).
In the same study some siblings did say that they resented their sibling with autism for
making their lives more chaotic and forcing more responsibilities on them at a young age. They
said that these feelings of resentment did impact their current relationships with their siblings.
Two-thirds of siblings had developed a strong relationship with the sibling with autism as adults.
Many of the siblings wanted to be involved in the care of their siblings and were torn with
providing support for their sibling and starting their own lives. They felt a responsibility to their
siblings but also wanted to invest in their own futures. This was even more prevalent in siblings
who had their own families; they were torn between their duty to their sibling and their duty to
their family. Having a sibling with autism doesnt end once you move out (Tozer & Atkin, 2015).

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Its important to realize how growing up with a sibling with autism can impact someone.

Providing families with resources that allow siblings to communicate their grievances and work
on strengthening their relationship with their siblings in crucial. Addressing these issues during
childhood allows siblings to develop a strong bond in adulthood. It is also important to remember
the numerous benefits growing up with a sibling with autism provides children with.
Effects on the Child with Autism Spectrum Disorder
After looking over the research, it was found that there are many factors that have an
effect on the child with Autism Spectrum Disorder (ASD). Three of the main themes were
stigmatization, race, and education. We will now analyze each of these themes and how they
affect the child with ASD.
Stigmatization
ASD has many different stigmatizations that accompany it. Most of these stigmas occur
based off of lack of knowledge of the disorder. The problem that arises from the lack of
knowledge is that it causes the person with ASD to be mistreated. In a study done by MilaiVidojevi, Gligorovi, & Dragojevi (2014), it was found that most of the stigmas that surround
ASD are centered around the misunderstanding of the cause of ASD. In the study, 95% of the
scientists identified that ASD is a genetic disorder, while 13% of parents thought that
vaccinations caused their child to be diagnosed with ASD and only a small percentage of the
parents thought that genetics was the sole cause of their childs diagnosis (Milai-Vidojevi et
al, 2014).
This common stigma that vaccinations cause ASD stems from the 1998 study performed
by Wakefield et al. In the study by Wakefield et al (1998), the reported findings were that 8 out
of the 12 children tested in the study showed signs that correlated with the diagnosis of ASD

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after receiving the measles, mumps, and rubella vaccine. In 2010, the study was proven to have
been fabricated causing Wakefield to have his license revoked and the study retracted. Despite to
knowledge of the falsified study, 13% of parents who have children with ASD believe that
vaccines were the cause of their childs diagnosis (Milai-Vidojevi et al, 2014).
The evidence moves from the stigmas that the parents believe to the stigmas that the
extended family believes about the person with ASD. The researchers identified two stigmas.
The first stigma is that the family members believe that the cause of the person with ASD having
their ASD diagnosis was based on the parents behavior. The family members tended to shame
the father more than the mother for causing the deterioration of the persons condition.
Nevertheless there was statistically significant data to show that extended family believed that a
common cause for their family member being diagnosed with ASD stemmed from the parental
behavior. The researchers also found that extended family believed that by being around the
family member could increase their chances of developing symptoms of ASD.
Through this data collection, Milai-Vidojevi et al (2014) determined that the major
cause of stigmatization by the family is lack of education. The lack of education allows them to
jump to conclusions and stigmatize their family member. This stigmatization has been shown to
significantly increase the amount of pity that family members show towards the family member
with ASD. It was reported that statistically significant for the family members responded that
they did feel pity towards their family member who had ASD and the nuclear family of the
person who had ASD. This pity was shown to lead to further stigmatization, deterioration of the
family member with ASD, and poor self-esteem in the family member with ASD.
Race

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It is believed the race and culture affects a persons values, beliefs, and personality. In

the study by Burkett, Morris, Manning-Courtney, Anthony, & Shambley-Ebron (2015), it was
shown that race can affect the diagnosis and outcomes of African-American children diagnosed
with ASD. Burkett et al (2015) found the these children were more often diagnosed later in life
than any other race. They were also found to be more independent than other children with
ASD. When looking into the reasons as to why this occurred the researchers found two main
causes. One was linked to the cultural beliefs of African-American culture and the other was
related to the health care system.
African-American families place a large value on their family system and tend to be very
close-knit individuals. Whenever a problem seems to arise, they ask their family for advice first.
It is not until the family gives their advice that the person will seek out a solution to the
problem. In the families with a child with ASD, they tended to consult their family members to
see if they noticed anything different in the child than other children. Because of this, they
tended to seek out medical advice later than other cultures and races (Burkett el al, 2015).
African-Americans also have to fight against many bias, which has caused them to place more
emphasis on independence. African-American parents were found to encourage more
independence and autonomy in all of their children at an earlier age and more often than any
other race in the study. This independence masked the typical symptoms of ASD in the AfricanAmerican children.
The bias that African-Americans face also stem to the health care system. Out of the 24
families surveyed in this study, the majority of them answered that they had seen and received
bias health care in the process of trying to get their child a diagnosis (Burkett et al, 2015). This
bias led them to researching into the best doctors and health care providers that they could. This

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also further encouraged them to try to enable independence in their child to help to break the bias
and stereotypes they saw. By the time they found a reliable doctor who would diagnose the
child, their children were often older than the average child was when diagnosed with ASD, and
most were found to be more independent making the diagnosis age increased as well (Burkett el
al, 2015).
Education
Education plays a key role in the growth and development of any child. For a child with
ASD, it is sometimes difficult to learn in a standard classroom. Many of the children diagnosed
with ASD also have a co-diagnosed learning disability that can impede on their ability to grasp
the concepts they are learning. Their impaired socialization makes it hard for them to feel
comfortable in large group settings that can often make a classroom environment an
overwhelming situation for them. Many children with ASD have impaired communication skills
that may cause them to have inappropriate behaviors, excessive noise, and limited verbalization
that can become disruptive in classrooms (Dallas et al, 2015).
For these students, there has been an increasingly number of programs to aid in their
learning process. For children in kindergarten through twelfth grade, special education is a
largely utilized program. Upon graduation from high school, it becomes a more complicated. It
is currently estimated that about 500,000 students with ASD are enrolled in some form of postsecondary education (Dallas, Ramisch, & McGowan, 2015). Of these 500,000 students, about
80% of them are working towards a diploma, degree, or license, but only about 39% of them will
actually finish their program. The barrier that they run into is not having the support and
resources that they need.

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Growing up, these children had the help and support of special education services in the

school systems. In the post-secondary system, these students have the opportunity to receive aid
through the office of disabilities/disability services at their post-secondary school. However,
gaining access to these resources is not always easy. Disability services on most campuses
function off of the most up-to-date Diagnostic and Statistical Manual of Mental Disorders
(DSM), which released the fifth and most up-to-date version in May of 2013 (Dallas et al, 2015).
With the age of diagnosis for autism ranging between four and nine years old, most of the
students heading into or currently attending post-secondary schooling have a diagnosis from the
DSM-4. This means that to get services from the disability services on their campus, they must
go back to their doctor to be re-diagnosed with a DSM-5 diagnosis.
Once the child is diagnosed with a DSM-5 diagnosis, they can receive services from
disability services, but they still will need support. Disability services can help the childs ability
to learn effectively in the classroom setting but putting items in place to help aid them. They can
also inform the teacher about the childs diagnosis to allow for a better acceptance of the childs
impaired communication ability and socialization skills. However, parents and family still need
to stay in touch with the child to make sure they are getting all the help that they need (Dallas et
al, 2015). They need to help the child advocate for themselves with disability services and in
their classrooms to get all the support that they need to succeed. Some children, depending on
their level of functioning, can move out and live on campus, while for others, commuting to their
post-secondary school may be a better option to help them be successful in their education.
Regardless of what the family decides for their childs post-secondary education, families of
children with ASD still need to be there to support the child to help them succeed.

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Growing up as a child with autism does not make you much different than anyone else.

Children with autism can learn and play just like other kids; they just have some limitations or
may require a little more help. Depending on the level of functioning, many children with
autism can become independent and attend post-secondary schooling. They can learn how to
form relationships and function well in society. People should not be afraid or pity people with
autism. They can do just what everyone else does, it just requires a little more time and some
more effort for them to get there.
Double ABCX Model Theory
The Double ABCX model (shown in Figure 1.) can be applied to families of children
with Autism Spectrum Disorder to describe how these families find themselves in crisis. Due to
increased stress levels in parents of children with autism, it is not surprising that many families
experience a continuous cycle involving crisis. McCubbin & Patterson expanded on previous
research done by Hill to develop the Double ABCX Model. The model consists of three parts:
pre-crisis, crisis, and post-crisis. Pre-crisis begins with a stressor a life event that changes the
family social system in terms of roles, routines, or relationships. The existing resources a family
has (and utilizes), and how the particular stressor is perceived by the family determines if they
will follow a path which could lead to crisis. Crisis can be defined as an overwhelming
disruption/disorganization in equilibrium. Having a negative perception of the particular stressor
and few resources creates a higher risk for crisis to occur. If the family is able to effectively cope
with the stressor, then crisis will not occur.
After crisis has occurred, there is pile up an accumulation of stressor events. Family
perception of the crisis, pile-up, and new and existing resources at their disposal determines how
they cope. Cognitive, affective, and behavioral domains are three dimensions of coping strategies

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that a family can be measured upon. It is at this point that familys attempt to find meaning in the
crisis and pile-up they are, or have experienced. Through coping, families achieve a new
equilibrium and adapt. Depending on the efficiency of the coping strategies employed by the
family, they will experience a bonadaptation or maladaptation. A family should strive to achieve
bonadaptation, which is often associated with resilience, or facing adversity in a positive way by
achieving a satisfactory new equilibrium.
In families of children with Autism Spectrum Disorder, there are numerous stressors that
could eventually lend themselves to a family-experiencing crisis. For example, the conjugal dyad
of a family separating would likely create a great deal of stress on the family, and the child with
autism specifically. If the child with autism does not use the resources available to them
(siblings, teachers, counselors, school psychologist, etc.), blame themselves, and/or is resistant to
the familial change, crisis may result. A complete outline of this example can be seen in Figure 2.
Conclusion
When working with families and children with autism, we as professionals need to be
aware of the challenges that the families may face. Children with autism have very unique
personalities. They like schedules and some of them need one-on-one care all the time. This can
add stress to the families that may put a strain on relationships between the parents, the siblings,
and the family as a whole. It is important to be able to be compassionate and patient with these
families to be able to assess their needs to help guide them to resources that can support them.
Educating the family on Autism Spectrum Disorder, coping mechanisms, and resources in the
community can help reduce stress and promote empathy in the family system. Facilitating
discussions between family members, school personnel, and other people that the person with
autism may encounter on a daily basis can help others better understand the childs needs and

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promote healthy growth and development. Setting families up with respite care, aids, and
counseling services can allow for normalization of feelings, reduction of stress brought on by
constant care of the child, and promote healthy relationships in the family. As professionals, if
we can assess the families needs, we can help to improve family dynamics, promote healthy
relationships, and allow the person with autism to grow and develop just like other children.

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Figure 1. Double ABCX Model.

Figure 2. Example of crisis in a family described by the Double ABCX Model.

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