THE EFFECTS OF AUTISM SPECTRUM DISORDER (ASD) ON ...

THE EFFECTS OF AUTISM SPECTRUM DISORDER (ASD) ON CAREGIVERS:

PERSPECTIVES OF PROVIDERS

A Project

Presented to the faculty of the Division of Social Work

California State University, Sacramento

Submitted in partial satisfaction of

the requirements for the degree of

MASTER OF SOCIAL WORK

by

Chandler A. Tinucci

SPRING

2018

ii

© 2018

Chandler Alexandra Tinucci

ALL RIGHTS RESERVED

iii

THE EFFECTS OF AUTISM SPECTRUM DISORDER (ASD) ON CAREGIVERS:

PERSPECTIVES OF PROVIDERS

A Project

by

Chandler A. Tinucci

Approved by:

__________________________________, Committee Chair

Maria Dinis, Ph.D., MSW

____________________________

Date

iv

Student: Chandler A. Tinucci

I certify that this student has met the requirements for format contained in the University

format manual, and that this project is suitable for shelving in the Library and credit is to

be awarded for the project.

__________________________, Graduate Program Director, ___________________

Serge Lee. Ph.D., MSW Date

Division of Social Work

v

Abstract

of

THE EFFECTS OF AUTISM SPECTRUM DISORDER (ASD) ON CAREGIVERS:

PERSPECTIVES OF PROVIDERS

by

Chandler A. Tinucci

This study considered the differing effects that autism has upon the caregiver from the

perspective of providers. This qualitative study used grounded theory and content analysis.

Results were coded using both manifest and latent content. A convenient sample of 11

respondents participated in the project, answering questions about their knowledge of the

effects of ASD upon the caregiver. Data analysis revealed that tending to a child with ASD

is draining, that it creates strain in caregiver’s relationships, and that it has an impact on

the caregiver’s emotional life. While there was a major theme of drain found, a significant

finding emerged conveying that caregiving can also generate positive emotions.

Implications for social work policy and practice are discussed with a recommendation

being that practitioners begin to devote attention to the caregiver as they do their autistic

client.

_______________________, Committee Chair

Maria Dinis, Ph.D., MSW

_______________________

Date

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ACKNOWLEDGEMENTS

I am so grateful for everybody who so generously helped me with this project. A

big thank you to Dr. Maria Dinis, who was the most wonderful, wise, timely, and just all-

around best advisor that I could have ever asked for. Thank you so much to all my friends

and family, who so graciously walked through this process with me, providing grace and

encouragement along the way. Thank you to the participants of this study, of which this

project could not have happened without. All my gratitude to Jesus, who carries me daily

and whose grace and love astonishes me every day. Finally, I would like to dedicate this

project to my friends with developmental disabilities and those who care for them. May

people begin to appreciate all you do to pour your love and care onto some of my most

favorite people.

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TABLE OF CONTENTS

Page

Acknowledgements……………………………………………………………………….vi

Chapter

1. THE PROBLEM.…………………………………………….…..……....……..….….1

Background of the Problem…………………………………………..……….2

Statement of the Research Problem……………………………………..…….4

Purpose of the Study……………………………..………………………..…..4

Research Question……………………………………………………..……...5

Theoretical Framework of Ecological Systems Theory …….…….……….…5

Application of Ecological Systems Theory…….…….……….………………7

Definition of Terms……………………………………………….……….….9

Assumptions……………………………………………………….………....11

Justification………………………………………….………….………...….11

Delimitations…...………………………………………………….…….…...12

Summary………………………………………………………..…………....13

2. REVIEW OF THE LITERATURE...………………………………….………...…..14

Historical Background of ASD …...……...……………………………….....14

The Effect of Autism on Providers …….…………………………………....17

Treatments ……………………………………………………………….17

Supports Available ……………………………………………………....18

Emotional Effects ………………………………………………………..18

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The Effect of Autism on Caregivers…………………………………..…......20

Finances ………………………….……..……………………………….20

Treatments …………………….……..………………………………….21

Familial Relationships …………….……..……………………………...24

Supports Available …………………….……..………………………….27

Formal Supports …………………….……..…………………………….28

Support Groups …………………….……..……………………………..29

Informal Support …………………….……..…………………………....30

Spirituality …………………….……..…………………………………..30

Physical Health …………………….……..……………………………..32

Mental Health …………………….……..……………………………….34

Social Life …………………….……..…………………………………..35

Emotional Well-being …………………….……..……………………....37

Gaps in the Literature………………………………….………….….………39

Summary…………………………………………………………..………....41

3. METHODOLOGY ……………………………………………..………………..….42

Research Question.…………………………………………………………..42

Research Design...……………………………………………….…….……..42

Qualitative Approach …………………….……..…………………………...42

Grounded Theory …………………….……..……………………………….44

Content Analysis …………………….……..………………………………..45

Study Population……………………………………………….…….………46

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Sample Population…………………………………………..……………….47

Instrumentation……………………………………………………………... 48

Data Gathering Procedures…………………………………………………. 49

Data Analysis…………………………………………………………….......50

Protection of Human Subjects…………………………………………..…...51

Summary……………………………………………………………..……....52

4. DATA ANALYSIS...………...……………………………………..………..………53

Participant Demographics ……………..………………………..…………...54

Tending to a Child with ASD is Draining ……..………………………..…..54

Strain on Caregiver Relationships ………………....…………..……………61

Impact on the Caregiver’s Emotional Life …………………..….…………...69

Summary……………………………………………………..………………74

5. CONCLUSIONS AND RECOMMENDATIONS……...…..………………..……...75

Conclusions……..……………………………………………..………….….75

Recommendations.………………………………………………….………..81

Practitioners of Social Work, Education, and Therapeutic Services………...83

Limitations……………………………………………………………..….....84

Implications for Social Work Policy and Practice..…………………..….…..85

Conclusion…………………………………………………………...………87

Appendix A. Interview Questions …………………………………………….…………89

Appendix B. Participation Confirmation/ Letter of Informed Consent ..………………..91

References………………………………………………………………………………..93

1

Chapter 1

THE PROBLEM

Violent outbursts, temper tantrums, screaming, isolation, an impaired ability to

communicate, loneliness, and unpredictability are common characteristics of autistic

children. Caregivers for autistic children face great challenges including the continual

pouring out of energy and resources and exhaustion. Some mention the benefits, but

overall research points to the fact that autism drains caregivers (Stuart & Mcgrew, 2009).

Rates of autism are on the rise and have never been higher (Centers for Disease Control

and Prevention (CDC), 2016). Because of this, caregivers possess an increased risk of

being negatively affected by the disorder. Not only are parents affected, but professionals

who work with autistic youth also feel the ramifications. Therefore, it is necessary to

evaluate autism’s effects on professionals because they spend a great deal of time with

their clients. Care providers’ interactions with their clients and their clients’ families can

strongly influence a parent’s experience of raising a child on the autistic spectrum.

This researcher has vested interest in the topic at hand. After caring for autistic

clients personally, she has seen the negative ramifications that accompany the disorder.

This researcher has seen how parents can become burnt out and resentful. She has

witnessed how autism does not just affect one aspect of the caregiver’s life but impacts

all facets. Furthermore, this researcher has had personal experience of how once one area

of a caregiver’s life is affected, other areas are in turn influenced as well. The effects of

autism spectrum disorder (ASD) on the caregiver are significant; it is a problem that

deserves much attention.

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This research will contribute to developing future support for caregivers of

people with ASD. Knowing how these individuals are specifically impacted will allow

social workers and similar professionals to create programs and fortify existing supports

that specifically benefit caregivers. Obtaining such information will also inform service

agencies of the provisions needed to care for the parent from a comprehensive viewpoint

so that they can, in turn, adequately support their child. This research will also provide

guidance to offer assistance to autistic individuals so that caregivers no longer have to

pay the price of experiencing subpar emotional, physical, spiritual, relational, and mental

health. In sum, this research will assist practitioners on micro, meso, and macro levels,

influencing how they interact with and engage those who tend to their clients who have

ASD. It will also impact caregivers as the study will inform them of potential

consequences of caring for their child with autism.

This chapter contains a description of the background of the problem, a statement

of the research problem, the purpose of the study, and, the research question. The chapter

describes the ecological systems theory and applies it to the problem of autism and

caregivers. Key terms are delineated, and the assumptions and justifications of the

research study are discussed. The chapter finishes with a discussion of the delimitations

of the study, as well as a summary of subsequent chapters.

Background of the Problem

According to the CDC in the United States (2016), approximately one in 68

children are diagnosed with ASD. Autism is found to occur more frequently in first-born

children (Ng, de Montigny, Ofner, & Do, 2017), as well as males (CDC, 2016). ASD is

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found to occur equally as frequent across all racial and socioeconomic groups. According

to the CDC, the rates of ASD have been increasing, especially in the past 20 years. For

example, in the year 2000, the occurrence of this disability was one in 150 children. Six

years later, one in 110 children were found to have the disorder. By 2008, one in 88

children were diagnosed, and by 2012, one in 68 kids were on the spectrum. According to

another study, the rates of ASD nearly doubled from the years 2013 to 2014 (Zablotsky,

Black, Maenner, Schieve, & Blumberg, 2015). Considering these numbers, it is clear that

autism is a problem that is only becoming more prominent with its effects becoming

more widespread as the incidence of those on the spectrum has certainly risen.

With autism on the rise, more caregivers and providers are faced with the

challenges of tending to these youths. Autistic individuals are rarely able to function

without a full-time caretaker (Cadman et al., 2012). Whether it be parents, respite care

providers, or teachers who are providing around the clock care, the position of being a

caretaker is likely wrought with challenges. Knowing the effects of autism on these

individuals is of utmost importance. Moreover, autism is expensive (Leigh & Du, 2015)

and the rising rates of ASD make health care more expensive for the rest of the

population. This fact affects both caregivers and providers as, with higher rates of autism,

they are utilizing more of their funds to supply the monetary need for the cost of autism.

The number of children that are needing full-time care has both expanded and has

implications. This research study will examine these consequences.

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Statement of the Research Problem

Discussions of autism rarely focus on the caregiver or the provider. Often the

pupil with autism is the focus of attention and the people in the autistic individual’s

immediate circle of influence are ignored. This study will focus on this neglected

population. Moreover, the main problem is the fact that there are not effective supports

and psychoeducation for caregivers who feel burnt out. There is a lack of expression of

the needs of caregivers. Studies that qualitatively and comprehensively give voice to the

caregiver’s experience are unavailable and there are no studies that consider the

provider’s perspective in the problem of autism.

A possible reason why caregivers’ experiences are ignored may be because

autism is a disorder that is still being understood. Because caregivers do not have any sort

of disorder, attention is not given to them as they are neuro-typical individuals. It is easy

to understand why so much research has focused on the problem that is autism; however,

this does not mean that this action is beneficial or just, for when caregivers’ needs are

ignored it is potentially troublesome not only for the caregiver, but also for the entire

family unit as autism’s effects are widespread. In sum, the limited extent to which the

literature exists on the effects of autism on caregivers is problematic.

Purpose of the Study

The purpose of this study is to: 1) discover the effects of ASD upon the

caregiver’s life as a comprehensive whole, and 2) use the results of the study to develop

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further supports for caregivers. This study will aim to provide scholarly research to the

nonexistent literature that describes the effect of autism on caregivers. A resolution of the

research experiment is to produce a thorough and comprehensive written work on the

influence of ASD as it impacts the following areas of the caregiver’s life: finances,

treatments, family relationships, supports available (formal, informal, and groups),

spirituality, physical health, mental health, social life, and emotional well-being.

A secondary objective is to increase the number of people that are aware of the

adverse effects of autism upon the caregiver for the purpose of providing them financial,

emotional, spiritual, and physical supports. Social workers could use the research to

develop a comprehensive support program for caretakers. It is also the researcher’s hope

that the study results could be utilized to inform policy and impact where service

agencies allocate their funds.

Research Question

This study examines the following research question: What are the effects of ASD

on the caregiver’s life in terms of: finances, treatments, family relationships, supports

available (formal, informal, and groups), spirituality, physical health, mental health,

social life, and emotional well-being

Theoretical Framework of Ecological Systems Theory

Ecology is a “branch of science concerned with the interrelationship of organisms

and their environment” (Ecological, n.d.). Ecological systems theory provides great

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insight into the impact of ASD on caregivers and originated from differing perspectives

in anthropology, sociology, and psychology (Robbins, Chatterjee, & Canda, 1998). The

ideas of holism and adaptation of an organism to its greater environment are consistent

themes from these beginning models (Robbins et al.). Howard W. Odum, a sociologist,

was a pioneer in the application of the ecological theory to social work, asserting that the

ecological model could be applied to social problems (Rotabi, 2007).

Furthermore, Uri Bronfenbrenner, a forerunner of the application of ecological

systems of thought to differing levels of the human’s environment, coined the terms

microsystems, mesosystems, exosystem, and macrosystems (Darling, 2007), relating

these different ideas to human development. The microsystem is the person’s most

immediate surroundings; it is the level that directly influences the individual. Examples

of factors in the microsystem include an individual’s biology or family, and one’s

intellectual, social, and emotional functioning (Paquette & Ryan, n.d.). The mesosystem

level is one in which there is a bidirectional relationship between two microsystems

(Paquette & Ryan). Examples encompass interactions with larger support systems, such

as exchanges between other parents, the school system, and treatment groups. In the

exosystem the individual is not directly involved, but the microsystem is impacted in

varying degrees whereas the macrosystem is the level that is influenced by the larger

culture of the world and community (Paquette & Ryan). Bronfenbrenner’s ideas had a

profound impact on ecological systems theory as they solidified the notion that one’s

environment plays an integral role in growth and development. This research study will

examine how the micro and mesosystems are affected by ASD.

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The idea that people are a part of a larger system was also influential (Brandell,

1997). Bertalanffy proposed this notion and asserted that systems are made up of smaller

sub-systems. This idea of general systems theory is applied to biology and to work with

groups and communities (Payne, 2005). The notion that systems function as a complex

entity is another concept that influences the ecological systems perspective (Payne).

Moreover, people are a part of their greater environment. Surroundings affect how

people act and behave; the opposite is also true as there is a shared relationship between

people and their surroundings (Payne, 2005). This concept is integral to the ecological

perspective. Germain (as cited in Robins et al., 1998), an influential ecological theorist,

noted that relationships between systems strive for a pattern of “goodness of fit”. In this

model, there is a joint relationship between the person and their environment and a focus

on how these two entities impact each other to change and adapt to the influences around

them (Robins et al.). A final concept central to ecological systems theory is the notion

that people each have their unique life path which is influenced by their environment and

different life stressors (Payne). These troubles propel individuals to develop coping

mechanisms that either fit with their environmental situation or are maladaptive. In sum,

the ecological systems theory model considers the differing environmental influences that

affect a person’s functioning.

Application of Ecological Systems Theory

Ecological systems theory teaches that nothing functions without a response from

other entities. This is especially true of the caregiver to the child with autism. Different

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environmental factors shape how the caregiver functions, and these influences must be

looked at from a holistic perspective. The ecological systems theory permits the

researcher to examine all aspects of the caregiver’s life that are influenced by ASD, not

just the financial, social, or the emotional aspects. For instance, the caregiver’s emotional

health is influenced by their mental health. Likewise, the provider’s social life is

determined by the supports available to tend to the child with ASD. All these factors

interact together, and ecological systems theory views these interactions from a holistic

lens, emphasizing that all factors work together to impact the overall person.

All aspects within the caregiving role can be defined within the microsystem (the

most immediate surroundings of the individual). The interplay between the parent and

their child, as well as the caretaker and the rest of the family unit are also considered

property of the microsystem. This is the case because the results of these interactions

directly influence the caregiver’s emotional, spiritual, physical, and mental health.

Ecological systems theory permits the researcher to view the interactions in the

microsystem as interactions that shape the caregiver’s inner experience and worldview.

The bidirectional interactions that occur between two microsystems are the mesosystem.

Here, the exchanges between a caregiver and a school personnel, the differing parental

relationships, or caregiver’s relationships with their support system (i.e. friends) are

entities that have a straightforward connection with the caregiver’s overall attitude.

The ecological perspective pays attention to the environment and it examines how

a person reacts to what is surrounding him or her. This theory can seamlessly be applied

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to the context of the caregiver in their stressful life environment. Raising a child with

special needs is stressful; there are added stressors in addition to the normal demands of

parenting. This tense environment that surrounds the caregiver affects their behavior and

stress management. The caregiver has the potential to utilize healthy coping mechanisms

that fit with their environment, such as, exercising, being a part of a support group, or

strengthening the bond between their partners, or they can incorporate maladaptive

patterns into their routine. Similarly, a professional who operates in a demanding

workplace will be shaped by his or her environment. If the workplace is demanding and

oblivious to employees’ caseloads, the quality of treatment will suffer. When applied

holistically, the ecological systems perspective makes sense of the interactions between

the caregiver’s microsystem, mesosystem, and their environment.

Definition of Terms

The following terms are used within this research project and are common in the

field of social work and autism disorder. The following terms are briefly defined.

Autism spectrum disorder (ASD) is an intellectual disability marked by decreased

communication skills and an impairment in social interactions. The disorder must be

diagnosed in the early developmental period. ASD ranges on a spectrum from level one:

“requiring support” to level two: “requiring substantial support” to level three: “requiring

very substantial support”; it impairs individuals on varying levels (American Psychiatric

Association, 2013).

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Provider refers to a paid professional (doctor, respite care worker, minister, social

worker, teacher, etc.) who interacts with a person with ASD and provides them with

either long or short-term support (Edwards & Bliss, 2008).

Caregiver refers to an individual who provides assistance to a person with ASD. The

caregiver often helps their autistic counterpart with routine activities, as well as with

activities that are more unconventional such as shopping, cooking, cleaning, and

managing finances (Whitlatch & Noelker, 1996 as cited in Mizrahi & Davis, 2008).

Treatment is the psychological care given to a provider or a caregiver in aims of helping

to relieve symptoms of their health condition and improve their quality of life (Treatment,

2017).

Supports refers to organizations, people, groups, or networks that give aid and provide

services (Support, n.d.).

Respite care is a short period of time when a professional assumes responsibility of a

developmentally disabled individual in hopes of providing a needed relief to the caretaker

(Chan & Sigafoos, 2001).

Supportive networks are entities (services or people) that provide individuals with

emotional or practical help in their time of need (Support network, n.d.) .

Spiritual life is the part of an individual’s life that relates to their “subjective practice

and experience of their religion, and to the spiritual exercises and beliefs… [they] have

regarding their personal relationship with God” (Spirituality, 2014, para. 1).

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Emotional effects are “any strong agitation of the feelings actuated by experiencing love,

hate, fear, etc., [that are] usually accompanied by certain physiological changes”

(Emotion, n.d.), para. 3).

Assumptions

The objective of this research study is based on a number of assumptions in

relation to autism’s influence on the caregiver. The first is that individuals with ASD

need a caretaker. The second assumption is that providers are included as caregivers.

Third is the assumption that ASD negatively affects the caregiver. Fourth, the researcher

wishes for the reader to note that there is a greater need for research in the field of

caregiving for people with ASD. Finally, there currently are not enough supportive

programs for caregivers.

Justification

Seeking to further the dignity of forgotten caregivers and providers, this research

project is consistent with social work ethics and values. Caregivers are at a disadvantage

in almost all areas of life. Economically, socially, emotionally, physically, and mentally,

these individuals possess an increased risk of experiencing problems. They assume sole

responsibility for a group that is severely marginalized. By tending to such children,

parents are subsequently marginalized as their needs are considered unimportant. The

research study at hand will further the social work value of enhancing dignity and worth

of the person by giving a voice to a group that is forgotten. Specifically, by surveying the

needs and experiences of the population at hand, social workers can treat caregivers as

individuals worthy of value and importance.

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Another way that the project will contribute to the profession of social work is by

increasing the meaningful relationships that caregivers have with children with ASD. As

set forth in the National Association of Social Workers (NASW) Code of Ethics (2008),

the profession places great importance fostering relationships between people so that

individuals’ well-being may grow. By noting the supports that would increase the well-

being and self-care of the caretaker, the relationship with the child is thereby stimulated.

This is the case because the autistic individual is benefitting from receiving support from

a person who is emotionally, mentally, and physically healthy. Indeed, this research study

is consistent with this charge to strengthen relationships among people so that the welfare

of both parties may be enhanced.

Finally, this analysis meets the need of providing culturally competent service to

caregivers. Caregiver’s needs are unknown since they have not been studied. This review

will seek to use the information gleaned to provide appropriate and skilled interventions

for caregivers. Knowing needs and how to meet them surely reflects the values of service

and competence that is foundational in the profession.

Delimitations

One delimitation of the study includes its sample population. Individuals who

were not over 18 and who did not care for an autistic individual for at least one year were

excluded as candidates for the research study. Another delimitation is the fact that the

participants surveyed are only from the greater Sacramento area. The researcher did not

have access to participants who were located outside of the greater Sacramento region;

thus, the study population was geographically fixed. Also, the study did not consider the

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perspectives of parents. Only the prospective of providers were obtained. It was best for

parents to be excluded from the study due to the psychological risk that was posed by the

interview questions.

Summary

This chapter discussed the introduction to the research study. There was a

discourse on the background of the problem, the research problem itself, and the overall

purpose of the study. Chapter 1 also explored the Ecological Systems Theory as it relates

to the topic of autism’s effects on caregivers. Moreover, the study’s key terms,

assumptions, justifications, and delimitations were reviewed. Chapter 2, the literature

review, will present a detailed history of ASD. The chapter will also describe the effects

of autism on the provider in terms of treatments, supports available, and emotional

effects. The impact of finances, treatments, family relationships, supports available,

formal supports, support groups, informal support, spirituality, physical effects, mental

health, social life, and emotional effects upon the caregiver will also be explored. There

is also a section on the gaps in the literature in Chapter 2. In Chapter 3 the research

methodology is presented, and in Chapter 4, the results of the study will be discussed and

analyzed. In Chapter 5, the research findings are presented, as are the implications and

the researcher’s recommendations to help improve future research studies relating to

autism and caregivers.

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Chapter 2

REVIEW OF THE LITERATURE

Chapter two is a review of the literature pertaining to autism and caregivers. To

begin the chapter, there is an overview of the history of autism spectrum disorder (ASD).

In the second section, the effect of autism on the provider’s life is explored. This section

is broken into sub-sections (finances, treatments, supports available, and emotional well-

being); the differing aspects of the provider’s life are delineated. Next, the discussion

turns to how autism influences all aspects of the caregiver’s life (finances, treatments,

family relationships, supports available (formal, informal, and groups), spirituality,

physical health, mental health, social life, and emotional well-being). Again, the effects

of autism are viewed from a comprehensive perspective as differing sections of the

caregiver’s life are explored in detail. The final section of this literature review examines

the gaps in the current literature and proposes suggestions as to how this research project

will fulfill some of these needs. A summary is also presented to conclude this chapter.

Historical Background of ASD

The roots of autism can be traced back to the beginning of time. Assuming the

disorder is neurological, one can assert that autism has been around for years (Feinstein,

2010). However, it has not always been studied. Prior to the twentieth century, the

general and medical public alike were oblivious to autism’s signs and symptoms. In fact,

many academics believe that what is now identified as ASD were first characterized as

symptoms of schizophrenia. Two individuals made groundbreaking discoveries of

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autism- Leo Kanner and Hans Asperger- but the term was first introduced in 1911 by a

doctor named Eugen Bleuler. Bleuler derived the term autism from a Greek word

meaning self; after Bleuler introduced the world to “autism” through a scholarly paper

and academic magazine, Eugene Minkowski made the term famous by utilizing it in 1937

in his book La Schizophrenia (Feinstein). To both these scholars, autism had to do with

social withdrawal and a lack of perception of reality.

Hans Asperger started to incorporate the word autism into his work as early as

1934; he utilized the term in a published speech in 1938 (Feinstein, 2010). Furthermore,

Leo Kranner wrote a paper entitled Autistic Disturbances of Affective Contact in 1943.

This paper was significant as it studied 11 children who lacked social engagement; it also

educated many on the diagnostic criteria of autism and distinguished the fact that autism

had to be present in a child before 30 months. In 1965 Kranner distinctively chose to

adopt Bleuler’s term of autism to be the cornerstone of his work. Asperger was separately

studying individuals who were more high functioning, and he noted that autistic

individuals had abnormal speech patterns and inhibited social interactions (Feinstein).

Throughout the 1940s scholars continued to study autism, making significant

discoveries as to what classified the disorder. In the 1950s these individuals attributed it

to a genetic cause, while by the 1960s parents were blamed for their child’s autism

(Feinstein, 2010). Psychologist Bruno Bettelheim supported this idea with his text The

Empty Fortress: Infantile Autism and the Birth of Self, asserting that children developed

autism because of their distant and aloof parents. Countering the blame, parents all over

the world banded together and formed their own advocacy groups and autism societies. In

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1965 the National Autism Association was created, and at their first meeting Leo Kranner

made the assertion that parents were not to blame for their child’s autism; this declaration

came as a result of many researchers studying the etiology of the disorder (Feinstein).

In the early 1970s separate education systems began to originate for children with

autism (Feinstein, 2010). Eric Schopler was one pioneer in the field; he created a person-

centered program, TEACCH (Treatment and Education of Autistic and related

Communication Handicapped Children), that focused on training parents to participate

alongside of their kids. Ivar Lovass was another developer in education. Lovass created

what is now known as Applied Behavior Analysis (ABA) therapy; he believed that

parents could help train their children to behave appropriately based on the notions of

reward and punishment. Dr. Israel Kolvin distinctly differentiated autism from

schizophrenia in his famous study of 33 children, in which he compared and contrasted

the two disorders, thereby solidifying their differences. The idea of autism as a spectrum

disorder was introduced in the 1970s. At that time, researchers sought to prove a genetic

basis for the ailment, and the first twin study was conducted. In the 1980s, the diagnostic

criteria of autism continued to manifest. With the publication of the DSM-III, autism was

again distinguished from schizophrenia and was labeled as pervasive developmental

disorder. Also in the 1980s, the subgrouping of “infantile autism” was created. In the

early 1990s, high functioning autistic individuals were identified as having Asperger’s

syndrome (Feinstein). Autism then became more researched, as well as more widely

accepted as a disorder, and genetic studies began to show that autism had a biological

link (The 1190s, n.d.).

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The year 2000 saw the signing into law of the Children’s Health Act, providing

“funding for a long-term research study on autism and establish[ed] an autism research

coordinating committee” (The 2000s, n.d., para. 1). Autism became more widely

researched in the new century, and the rates of autism multiplied (The 2000s, n.d.).

The Effect of Autism on Providers

In this section, the effects of autism on providers are discussed in terms of

treatments, supports available, and emotional effects.

Treatments

Very little research exists on best treatment methods to be utilized by providers

treating those with ASD. In fact, the only literature that exists states that supervision is a

helpful tool in the specialist’s learning process (“Best practice standards,” 2012).

Supervision is defined as “the relationship between supervisor and supervisee in which

the responsibility and accountability for the development of competence, demeanor, and

ethical practice take place” (“Best practice standards”, p. 6). Supervision is particularly

utilized in the social sciences field, where it is used to guide and correct the supervisee to

ensure that they are carrying out best practice methods (“Best practice standards”).

Hence, when discussing the care given to professionals to help ground them in their work

with ASD clients, supervision is the primary intervention.

This treatment modality is helpful because it allows practitioners the ability to ask

their mentors questions. For instance, if an ABA therapist is unaware of how to decrease

an autistic client’s self-injurious behavior, she is obligated to ask her supervisor for

professional guidance to discover new empirically tested intervention strategies.

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Supervision helps practitioners to be more well-rounded, replacing their areas of

weakness with sound advice from those in the field with more wisdom and knowledge

(“Best practice standards”, 2012). This approach is primarily used in the social sciences

field, but it can be applied across a wide variety of settings by means of a professional

mentorship. Clergy and those in the teaching profession often have mentors to help guide

them in their careers. Medical doctors are also provided with supervision as they are

completing their residencies. Supervision is utilized as a treatment modality for providers

as it offers a direct remedy for those areas in their career which may be underdeveloped.

Supports Available

While working with autistic clients, it is important to have an outlet and a safe

place where one feels supported and validated. Unfortunately, there is not much literature

on the supports available for providers of people with ASD. However, one built in

support for these professionals is their supportive network of coworkers and supervisors.

These individuals provide a valuable community for professionals to feel understood and

not alone. Illustrating the vitality of coworker and supervisor support, Okediji, Etuk, and

Nnedum (2011) found that there was a significant relationship between the extent to

which coworkers and supervisors were involved in the employee’s life and job

satisfaction. Likewise, even professionals need community and support to thrive in the

workplace environment.

Emotional Effects

Providers are not exempt from the emotional effects of supervising a child with

ASD. There is no literature describing the emotional impact of autism on ministers,

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doctors, respite care workers, or therapists; but there is however, literature that explores

the influence of ASD on teachers. Much of the research points to the fact that ASD is

burdensome on teachers, thereby leading to educator burnout (Boujut, Dean, Grouselle &

Cappe, 2016; Boujut, Popa-Roch, Palomares, Dean & Cappe, 2017). This stress takes an

emotional toll on teachers as burn out leads to emotional exhaustion. Jennett, Harris &

Mesibov (2003) succinctly define emotional exhaustion when they state that it “occurs

when emotional resources are depleted and teachers feel they can no longer give

psychologically of themselves” (p. 583). Without a doubt, this tension adversely affects

the professional’s emotional health. Some reasons cited for burnout include the behavior

problems associated with ASD (Hastings & Brown as cited in Lecavlier, Leone & Wiltz,

2006) and the stress associated with having to tailor to autistic children’s needs in the

classroom (Boujut et al., 2017).

Special education teachers are not the only individuals confronted with burnout

(Boujut et al., 2016), for with the inclusion of intellectually disabled pupils into

mainstream education, general classroom teachers are affected as well. Furthermore,

general education teachers have an increased probability of suffering from the adverse

emotional effects of ASD, as specialized teachers’ training provides for them a protective

factor against burnout (Boujut et al.). In sum, burnout is a very real phenomenon for

individuals in the education field; it is likely that other professionals experience similar

strain from working with autistic clients.

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The Effect of Autism on Caregivers

In this section, the effects of autism on caregivers are discussed in the following

areas: finances, treatments, family relationships, supports available (formal, informal, and

groups), spirituality, physical health, mental health, social life, and emotional well-being.

Finances

The cost of ASD on caregivers is significant. Raising a neuro-typical child is

expensive; nurturing a child with ASD is even more complicated and has even greater

financial implications. Research to date states that the majority of caregivers to children

with ASD struggle financially (Fletcher, Markoulakis, Bryden, 2012; Kogan et al., 2008;

Sharpe & Baker, 2007; Zablotsky, Kalb, Freedman, Vasa, & Stuart, 2014). There are

many reasons for these financial struggles. Some assert that the medical care they are

provided with through their employers does not meet their child’s needs, and, because of

this, parents are left to find and pay for better suited medical care utilizing their own

expenses (Zablotsky et al.). This can be a substantial cost.

Others report that having a child with ASD results in many out-of-pocket

expenses. Many autistic children need additional behavioral and speech therapies. The

services for these interventions are rarely covered by state funds; it is left up to the

parents to cover this cost on behalf of their children (Sharpe & Baker, 2007). It is vital to

mention that these therapies are incredibly expensive. Some estimate that they spend

roughly between $33,000 and $48,000 for a year’s worth of Intensive Behavior

Intervention (IBI) therapy (Fletcher et al., 2012; Sharpe & Baker). Furthermore, these

therapies are proven to be effective early in a child’s life, so caregivers face the pressure

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of providing interventions early on in their child’s development though they may not yet

be financially secure (Sharpe & Baker). To provide their child the treatment and care that

they need, family members spend a lot of their own money which results in a tremendous

financial burden.

Another area of financial strain is the out-of-pocket expenses of non-medical and

non-therapeutic care services. For example, specialized diets, individual extracurricular

activities, and specific respite care services are all additional expenses that parents must

bear to ensure that their child is receiving what they need (Fletcher et al., 2012). If an

autistic client has disruptive and explosive behaviors, caregivers spend even more money

when they have to replace household items that fall prey to behavioral episodes (Sharpe

& Baker, 2007). An additional financial implication is that many parents must give up

working so that they can provide full-time care. In a study conducted by Okumura and

colleagues (2009), it was found that 24 percent of families with a child with a special

health care need had to drop out of the workforce to support their child’s medical

necessities. Other caregivers report having to scale back their time at work to be more

available for their child (Ganz, 2007). The research indicates that caregivers of autistic

individuals struggle financially. There are no positive impacts of autism on one’s

financial status, instead autism drains caregivers’ bank accounts.

Treatments

The effects of treatment on caregivers of ASD children is expansive. Research to

date shows that differing therapeutic groups have proven to help reduce the chronic stress

and depressive symptoms that are often present in this population (Blackledge & Hayes,

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2006; Ruiz-Robledillo & Moya- Albiol, 2015; Ruiz-Robledillo, Sarinana-Gonzalez,

Perez-Blasco, Gonzalez-Bono, Moya- Albiol, 2014b). One such intervention is the

cognitive behavioral therapy (CBT) model. In this model, researchers have found that

levels of caregiver burden decreased after the therapeutic intervention was provided;

levels of depression, somatic symptoms, and caregiver strain remained low even after one

month had passed (Ruiz-Robledillo & Moya- Albiol). In a study conducted by Ruiz-

Robledillo and Moya-Albiol, cognitive behavioral techniques were used primarily to

increase efficient coping strategies and resiliency skills in parents of children with ASD.

The building of these skills was found to be directly tied to better health outcomes and a

more positive mood (Ruiz-Robledillo et al, 2014b). Furthermore, when conducting a

meta-analysis of the treatments available to parents of children with ASD, Singer,

Ethridge, and Aldana (2007) concluded that CBT was an efficient mode of treatment in

six studies that were reviewed, and found that colleagues note that combining CBT with

other interventions produces a more successful treatment model.

Mindfulness-based interventions have also been proven to have efficacy; this type

of intervention implores participants to stay present in the moment- letting go of

unhelpful and distracting thoughts and embracing those thoughts that are consistent with

their existing situation. In a study conducted by Ruiz-Robledillo et al. (2014b), a

mindfulness intervention was incorporated that covered techniques of using differing

types of meditations, engaging in body scans, practicing intentionality in one’s thoughts,

and accepting and caring for oneself. After the intervention, it was found that both

caregivers and non-caregivers alike reaped the benefits of the intervention. Specifically,

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for caregivers, it was found they had a reduction in anxiety, negative mood, and general

health complaints. Ruiz-Robledillo and colleagues (2014b) note that it is vital for

caregivers to live in the present moment so that they can experience reduction of anxiety;

they also state that living with non-judgmental acceptance is a key to managing the stress

of parenting a child with ASD.

Similarly, acceptance and commitment therapy (ACT) has been found to be

applicable to this caregiving population. This type of treatment modality stresses that

individuals accept their unwanted thoughts and emotions; this act is particularly

applicable to caregivers as sometimes unpleasant thoughts about wishing their child were

different or undesired emotions about being embarrassed by their child plague parents

(Blackledge & Hayes, 2006). Solution Focused Brief Therapy (SFBT) and Structural

Family Therapy (SFT) together have also been proposed as other possible treatments. In

“Managing Child Behavior Problems in Children with Autism Spectrum Disorders:

Utilizing Structural and Solution Focused Therapy with Primary Caregivers”, an article

proposing an effective treatment model for caregivers, Brockman, Hussain, Sanchez, &

Turns (2015) state that primary goals of the intervention are to work with parents to

strengthen their subsystem, as well as to help caregivers learn to produce support systems

outside of their family. SFT is utilized in this action, while SFBT is experienced by

having parents notice their current successes in parenting, and then encouraging these

parents to build on these victories (Brockman et al.). In short, ACT, SFBT, and SFT are

all interventions that show promise in supporting caregivers of these children with

disabilities.

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All the discussed studies have one thing in common- they were all conducted as

group treatment modalities. Group work has been proven effective in treating this

caregiving population (Ruiz-Robledillo, Andres-Garcia, Perez-Blasco, Gonzalez- Bono &

Moya- Albiol, 2014a; Ruiz-Robledillo & Moya- Albiol, 2015). One reason this sort of

treatment is so effective is because of the shared social identity and the learning from the

experiences of others (Shilling et al., 2013). These two experiences allow caregivers to

not feel isolated in their work caring for their children. Social support has been studied,

and it was found that “positive social interaction and emotional/ informational support

were significant mediators of the association between resilience and self-reported health”

(Ruiz-Robledillo et al., 2014a, p. 693). Hence, social interaction in the form of group

treatment has been proven to be successful in positively affecting caregivers’ overall

health, proving that group treatment work is a promising modality.

Familial Relationship

Autism affects caregivers, which in turn affects their families. The primary

familial relationship that is influenced by the parent’s demanding job as a full-time

caregiver is the marital relationship. Parents are under a significant amount of stress when

they act as the primary caregiver to their autistic child (Hutton & Caron, 2005; Koegal et

al., 1992; Rao & Beidel, 2009); in fact, they are under more stress than the parent raising

the neurotypical child. Reasons proposed for this level of stress include the autistic

individual exhibiting behavioral problems and having a lack of communication skills

(Rao & Beidel, 2009). Other researchers suggest that parents are worried about what will

happen to their child when they outgrow their care (Koegal et al.). Still others assert that

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the demands of an autistic child’s schedule, for example driving to and from meetings

and therapy appointments, and filling out copious amounts of paperwork burdens parents

(Hutton & Caron). Regardless of the reason, caregivers experience a significant amount

of pressure.

This stress that caregivers face often leads to marital discord. Mothers of autistic

children with the most significant behavior problems noted that they experienced “lower

levels of spousal support, respect for their partners, and commitment to their marriages”

(Pelchat et al. as cited in Brobst, Clopton, & Hendrick, 2009, p. 47). A study conducted

by Robinson & Neece (2014), found that high levels of parental stress were associated

with lower marital satisfaction rates; it was also discovered that it is particularly

detrimental to the spousal relationship when the child engages in behavioral outbursts.

Kersh, Hedvat, Hauser-Cram, and Warfield (2006) note that parents of children with

disabilities have below average marital satisfaction when compared to the population of

parents of typically developing children. In fact, a strained marital relationship is typical

of parents of autistic children (Freedman, Kalb, Zablotsky, & Stuart, 2011). Couples who

experience daily stressors are more likely to have relational difficulties than those who do

not experience a frequent amount of stress (Bodenmann, Ledermann, & Bradbury, 2007).

Clearly, the high parental stress experienced by caregivers directly affects their fulfilment

in their marriage.

Next, it is worth examining the relational satisfaction of caregivers. Before

delving into the effect of ASD on relational satisfaction, it is important to distinguish the

difference between marital satisfaction and relational satisfaction. Marital satisfaction can

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be defined as the subjective level of pleasure and acceptance that is felt between two

spouses; relational satisfaction, on the other hand, is a broader term and it includes how

pleased one is with their interpersonal relationships (Vajda, n.d.). For example, relational

satisfaction could potentially include one’s relationships with their other children or other

members of their family. As suggested, ASD can affect one’s relational satisfaction. Both

Brobst et al. (2009) and Garcia-Lopez, Sarria, Pozo, and Recio (2016) found that, when

compared to parents of children with other disabilities, autism was correlated with lower

relationship satisfaction. ASD was also found to increase the amount of familial stress

placed upon brothers and sisters of autistic youth (Sivberg, 2002). Paying attention to the

coping strategies used by caregivers, it is essential to state that when healthier and more

adaptive coping strategies were used, there was a higher chance of positive relational

satisfaction, both within the family unit, and between partners (Garcia-Lopez et al.;

Sivberg). Means of coping with the stress of raising an autistic youth are important to

consider as these coping behaviors have the potential to affect not only one’s relational

satisfaction, but also the status of one’s marriage.

Divorce is commonplace in today’s world, and therefore it is essential to decipher

whether caregivers are at an increased risk of divorce when compared to the rest of the

population. While the divorce rate for parents of autistic children is often portrayed in the

media as high as 80 percent (Freedman et al., 2011), Hartley et al. (2010) found it to be

23.5 percent, lower than that of the general population. While this is certainly lower than

what one might expect considering how much parental stress caregivers are under,

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parents’ relationships are in fact affected by ASD. The effects are not positive; marriages

and interpersonal relationships suffer because of autism.

Supports Available

In light of the high incidence of ASD, it would make sense that there would be

many supports in the community to help caregivers cope with their child’s disorder. This

assumption is true- the community has made a great effort to connect and support

caregivers of autistic youth. Whether caregivers receive support from their church,

extended family, support groups, or through greater online networks, parents have a vast

array of supportive options available to them. Respite care services and supportive

networks will be covered shortly; however, it is worth spending time on the variety of

supportive services available to caregivers on the internet (California Autism Foundation,

2014).

Through websites like autismspeaks.org and autism-society.org parents have the

opportunity to connect with other caregivers in their similar situation. They also have the

chance to be helped by the literature on the websites. Autism-society.org has a section on

their website where they explain the symptoms, diagnosis, and causes of ASD (Autism

Speaks Inc., 2016). Autismspeaks.org has an Autism Response Team whose goal is to

connect parents with resources and educational material. Facebook communities have

also proven to be an invaluable resource for these caregivers. Again, these profiles allow

mothers and fathers all over the world to connect with one another and to bond over the

struggles and triumphs of their children. Professionals in the field can also be valuable

resources for parents. For instance, social workers can assist families by connecting them

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to services (“Understanding the role”, n.d.). Teachers and ministers can assist families by

informally connecting them to other caregivers in the autism community. Indeed, there

are many supports available to parents of autistic children. Now, the discussion will turn

to respite care supports and other supportive networks as a means to assist caregivers.

Formal Supports

When a parent utilizes respite services, they are giving themselves a break from

the role of caretaking. Respite care is a short period of time when a professional assumes

responsibility of the developmentally disabled individual in hopes of providing a needed

relief to the caregiver (Chan & Sigafoos, 2001). As already discussed, caring for an

autistic child is extremely stressful; rarely do parents get a break from the role of

caretaking (Factor, Perry & Freeman, 1990). Providing respite care for parents may allow

mothers and fathers the opportunity to spend quality time in each other’s presence

(Harper, Dyches, Harper, Roper & South, 2013); it may allow them to run errands,

workout, or enjoy being by themselves.

Respite care has been proven beneficial to parents of children with ASD; many

sources of literature support this fact (Chan & Sigafoos, 2001; Dyches, Christensen,

Harper, Mandleco & Roper, 2015; Factor et al., 1990; Gouin, Estrela, Desmarais &

Barker, 2016; Harper et al., 2013). In a study conducted by Gouin et al., it was found that

caregivers had better health when they utilized this formal support. Similarly, Dyches et

al. and colleagues have noted that there was a strong association between daily uplifts

(pleasurable and positive experiences, as cited in Lazarus, 1984) and the use of respite

care. The more the caregiver utilized this formal support, the more daily uplifts they

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experienced. Daily uplifts are a protective factor against depression. Moreover, when

Chan and Sigafoos reviewed the literature on respite care, they concluded that parental

stress is lessened when caregivers use formal supports. This is especially true when

respite care is used in the short-term. The use of formal support is correlated with better

marital quality for couples of children with ASD (Harper et al., 2013). There is a push in

the literature to amplify the availability of respite care services so that more parents can

benefit from them (Meadan, Halle & Ebata, 2010). In sum, many studies prove the

effectiveness of respite care; it should be a support that caregivers are using to lessen

their burdens.

Support Groups

Support groups are another medium of formal support. Mutual aid groups are

designed to alleviate caregiver stress; they also provide an atmosphere for parents to

connect with each other and avoid social isolation (Boyd, 2002). Other purposes of

support groups are to assist caregivers in processing through the thoughts and emotions

that come with raising a child with ASD, to help parents navigate the different medical

and educational service systems, and to promote a common understanding of others

(Banach & Couse, 2012; Banach, Iudice, Conway & Couse, 2010). Furthermore, support

groups have been found to achieve these goals (Boyd; Meadan et al., 2010). Specifically,

mutual aid groups enable caregivers to gain the skills necessary to advocate effectively

for their child; parents also make gains in self-efficacy as a result of having participated

in this formal assistance (Banach et al.; Mcaleese, Lavery & Dyer, 2013). Another benefit

of therapy groups is that parents have been found to gain more positive coping skills due

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to their participation (Clifford & Minnes, 2012). Indeed, the evidence for the necessity

and effectiveness of support groups is both resounding and vast.

Informal Support

Lastly, informal supports should be examined. These supports consist of extended

family members, neighbors, and friends who provide respite type care on behalf of the

parent (Boyd, 2002). This type of support system is not as researched as formal care

systems; however, it is worth considering. Of the few studies that have been conducted, it

has been found that this type of support lessens stress and depressive symptoms- familial

backing is also correlated with happier marriages (Boyd). More research needs to be

conducted on this topic; however, the current research proves it to be a valuable mode of

support for caregivers.

Spirituality

Caregivers’ spiritual lives are not exempt from the rippling effects of autism.

Before delving into these effects, it is vital to distinguish between the two ways to

manage ASD through religious and spiritual coping. Religious coping is measured by the

activity of attendance and involvement in churchgoing activities, for instance

participating in a Bible study or talking with church members or clergy (Ekas, Whitman,

& Shivers, 2008). Spiritual coping is defined as one’s personal, private relationship with

a higher power (Coulthard & Fitzgerald, 1999). Prayer and meditation are examples of

sacred activities within both areas.

When parents use religion to help manage their child’s disorder, they become

connected with the church body; consequently, parents feel emotionally, spiritually, and

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financially supported. It is known that mothers utilize religious coping to deal with the

effects of having a child with a disability more so than fathers (Priyanka, & Priyanka,

2016). Caregivers with higher church attendance have greater feelings of support and

contentment than those who do not attend religious services (Ohanlon, 2013). It is worth

noting that feeling included in a church community is vital to the effectiveness of religion

as a management technique. When caregivers feel judged for their child’s disability and

corresponding negative behaviors, they report feeling isolated and unsupported

(Coulthard & Fitzgerald, 1999). Indeed, the amount that one feels assisted by their

congregation affects the degree to which religious coping is a useful resource.

Most of the literature regarding caregiver support asserts that organized religion is

not as effective as spirituality because dealing with problems spiritually allows

individuals to utilize resources inside themselves (Ekas et al., 2008; Coulthard &

Fitzgerald, 1999). Managing through prayer allows caregivers to feel closer to their

higher power, and, because of this, mothers report feeling less alone in their struggle of

raising an autistic youth (Ekast et al.). Prayer also allows parents to feel like they are

surrendering their problems over to a higher power, which provides emotional relief for

some mothers and fathers (Coulthard & Fitzgerald). Managing life through spiritual

means yields positive effects on caregivers’ spiritual lives. A qualitative study by Myers,

Mackintosh, and Goin-Kochel (2009) found that nearly all respondents felt that their

autistic youth had enhanced their spiritual journey. Positive spiritual managing has been

shown to enhance one’s relationships and advance their coping strategies (Ekas et al.).

Constructive divine coping has also been shown to affect how close one feels to their

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higher power (Tarakeshwar, & Pargament, 2001). Furthermore, some parents choose to

view their child as a blessing or as a special test from God; this stance has helped their

faith deepen and develop into the belief that their child can progress and obtain goals

(Heidary, Shahidi, & Mohammadpuor, 2015). In short, autism can positively affect a

caregiver’s spiritual life as it can reinforce religious beliefs and a closer connection to

God.

While some caregivers choose to believe that their child is a good gift from God,

others become angry at Him. In this sense, autism can have a negative effect on

caregivers’ spiritual lives as depressive affect and anxiety can increase as result of the

caregiver choosing to cope adversely with their feelings (Ekas et al., 2008; Tarakeshwar,

& Pargament, 2001). Among these harmful ways of coping are blaming God (Bennett,

Deluca, & Allen, 1995) and questioning Him (Gray, 1994). It is evident that harboring a

negative view of one’s higher power can lead to distress, bitterness, and resentment.

Physical Health

It is well known that stress leads to adverse physical health. Caregiving stress is

well documented amongst parents who tend to autistic children (Hutton & Caron, 2005;

Koegal et al., 1992; Rao & Beidel, 2009). It is imperative to examine the relationship

between this stress and the ramifications on one’s body. The research on the physical

effects of ASD on caregivers is sparse; only a few studies have been conducted

examining the relationship. Of these studies, Johnson, Frenn, Feetham, and Simpson

(2011) report that mothers experience greater physically adverse symptoms than fathers.

Such symptoms include poor hygiene and sleep difficulties.

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High functioning autism spectrum disorder (HFASD) has also been proven to

negatively affect the caregiver. While the individual with HFASD is not as gravely

disabled as the typical child with ASD, HFASD still has contrary effects. When studying

the quality of life of these parents, it was discovered that they had self-perceived lower

levels of physical and mental health (Lee et al., 2009). The mental health of these

individuals will be discussed in a subsequent section; however, it is particularly

interesting to note that these people reported sub-par health due to the stress of their

child’s disorder. In a similar vein, Allik, Larsson & Smedje (2006) discovered the same

result of HFASD on parent’s physical health; however, their findings were only

replicable for mothers- they did not find low scores of physical health in fathers. In

another study conducted by Caplin and Young (2007), it was observed that “41 percent

[of parents with autistic children] reported that their health had worsened over the past

year” (as cited in Lee et al., p. 228). These findings are staggering considering that

caregivers are not only worried about the health of their child, but worried about their

own health too.

Because the research on the aforementioned relationship is so limited, it is

necessary to not only examine caretaking from the perspective of those who are in charge

of autistic children, but it is also essential to take a look at caregivers and their

relationship to stress in general. Caregivers have been shown to live in a chronic state of

stress (Long et al., 2004), which can affect the body in a number of ways. Guardians who

experience a constant state of stress have been found to have an increased risk for heart

attacks and strokes (Tovian et al., n.d.; Harvard Health Publications, 2011). Muscle

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tension, leading to headaches and migraines, are also a common symptom (Tovian et al.).

Stress also breaks down the sympathetic nervous system in the body so that it becomes

fatigued. As expected, caregiving has a negative relationship with physical health. This is

also true of ASD. More research needs to be conducted on the topic so that the full effects

of the disorder can be understood by parents and professionals alike.

Mental Health

Research denotes that mental health struggles affect caregivers of autistic

children. These parents report significantly lower mental health ratings and higher ratings

of stress compared to caregivers of children with other disabilities (Abbeduto et al., 2004;

Bitsika & Sharpley, 2004; Montes & Halterman, 2007; Rao & Beidel 2009). Moreover,

the quality of mental health for the autistic child’s caregiver is overall poor. The two

main documented illnesses that plague caregivers are anxiety and depression. It is

recognized that parents of children on the spectrum suffer from the discussed disorders in

conjunction with one another (Bitsika & Sharpley; Hastings, 2003; Padden & James,

2017), as well as separately (Abbeduto et al.; Benson, 2017; Benson & Karlof, 2009;

Keenan, Newman, Gray & Rinehart, n.d.; Lushin & O’Brien, 2016).

For those parents that experience both anxiety and depression, behavior is the

primary factor (Bitsika & Sharpley, 2004). Self-efficacy has been found to be a mediator

between mental health and perceived behavioral problems (Hastings & Brown, 2002), but

there are those whose mental health remains affected nonetheless. There are no gender

differences between parents (Padden & James, 2017); indeed, the mental health

consequences of autism equally affect mothers and fathers.

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Anxiety specifically plagues many parents. Findings indicate high levels of

attachment-related anxiety (Keenan et al., n.d.), and female caregivers are often cited for

experiencing more anxiety than males (Hastings, 2003). Common symptoms of anxiety

include restlessness, fatigue, feeling nervous or on edge, excessive worry, and muscle

tension (American Psychiatric Association, 2013). As one could imagine, these effects

can seriously impair daily functioning.

Furthermore, depression also exists in solitude. The phenomenon of stress

proliferation, whereby stress can produce more stress, has been discovered to affect levels

of depression in caregivers (Benson & Karlof, 2009). Poignantly this research speaks to

the immense amount of stress that parents are under when raising a child with ASD.

Depression in these mothers has been found to be greater than those who parent a child

with Down syndrome (Abbeduto et al., 2004). Common depressive consequences include

feeling hopeless, having low self-esteem, losing interest in everyday activities, and being

isolated (American Psychiatric Association, 2013). In sum, the effects of ASD on the

caregiver’s mental health are significant; sufficient research points to this fact.

Social Life

When individuals have an active social life, they are able to spend intentional time

with friends and family; they are also apt to engage in recreational events, go on

vacations, and have time for leisure activities. Caregivers of autistic youth are not

afforded these opportunities, for nearly every aspect of their social life is taken up by

caring for their son or daughter. The overall time spent outside of the home is even less

for caregivers than for typical parents. Supporting this, Rao and Beidel (2009) have noted

36

that families of autistic youth engage in fewer social and recreational activities. A

qualitative study conducted by Myers et al. (2009), found that many ASD parents faced

social isolation. Moreover, they discovered that parents had limitations on the places they

could go and the things that they could do because of their child’s disorder. Such

restrictions included a struggle to spend time with extended family, a lack of an ability to

go on vacations, and a hindrance in the capacity to run simple errands. Other researchers

support the fact that parents of autistic children experience social isolation (Dunn,

Burbine, Bowers & Tantleff-Dunn, 2001; Hall & Graff, 2010; Hutton & Caron, 2005;

Kinnear, Link, Ballan, & Fischbach, 2016). In fact, some authors assert that parents

choose to detach from social engagements so that they will not have to deal with their

child’s problem behaviors in public (Dunn et al.). Indeed, the caregiver is socially

inhibited due to ASD.

In addition to being homebound, autism influences caregivers’ relationships.

Some report that parents lose connections with friends because of the disorder (Myers et

al., 2009; Hutton & Caron, 2005). Reasons for this could include the perceived societal

embarrassment toward the child, as well as the lack of free time for social engagements.

Furthermore, when parents in the Myers et al. study were surveyed, they found that there

were only a handful of families that said that their social circles had been expanded as a

result of meeting other families with an autism diagnosis. Indeed, the majority of parents

sampled suggested that their social lives with friends suffered. Other constraints to the

caregiver’s social life also exist. For example, because parents are almost totally occupied

with their child, they rarely get any time to be by themselves (Myers et al.), and the

37

marital relationship suffers because of this (Phelps, McCammon, Wuensch & Golden,

2009). Caregivers also assert that they are unable to partake in family outings (Phelps et

al.), and some do not receive an adequate amount of support from their extended family

(Hutton & Caron). They state that they are treated terribly by strangers (Hutton & Caron;

Myers et al.). The sense of social isolation is so strong in this population that some state

that they still feel isolated even when they have supportive people in their lives (Dunn et

al., 2001). It is important to note that the more behavior problems the child experiences,

the more social isolation their parents encounter (Hall & Graff, 2010; Kinnear et al.,

2016). To summarize, parental social isolation is a result of autism; parents’ authentic

experiences and varying studies testify to this fact.

Emotional Well-being

Caring for an autistic youth can be emotionally draining. In fact, some label this

emotional depletion as caregiver burden. This sensation happens when parents care for

their child with ASD at the expense of themselves; in short, it is the emotional load that

individuals carry. Across the child’s lifespan, caregiving burden has been found to

adversely affect parents (Cadman et al., 2012; Stuart & Mcgrew, 2009; Vogan et al.,

2014). ASD is an intellectual disability that produces some of the highest levels of burden

(Mao, 2012); the care it requires to tend to an autistic child has been equated to caring for

a person with a brain injury (Cadman et al., 2012). According to Cadman and colleagues,

the child’s unmet needs are a factor that produces much stress which includes the

caregivers’ perception of how well they are fulfilling their autistic child’s desires and

family needs. The child aging out of care, which happens for many individuals when they

38

turn 21 and are no longer able to attend school, is an additional stressor (Vogan et al.,

2014). Having high medical and mental health needs, as well as the degree to which the

child is impaired emotionally, all contribute to the intense level of burden experienced by

caregivers (Vogan et al.).

Intense worry is another emotional effect. The principle cause of fear for most

parents is the preoccupation about who will take care of their son/ daughter when they die

(Murphy, Christian, Caplin & Young, 2007). In a survey conducted by Murphy et al., the

emotional health of caregivers was captured when they found that approximately two-

thirds of caregivers experienced persistent feelings of guilt, depression, and anxiety.

Many mothers even reported feeling guilty about the lack of time and energy they were

able to invest in their other family members, as well as themselves. It should be noted

that these mothers often correlated their emotional well-being to the progress that their

child made (Larson, 1998). When their child was not progressing as typical, these parents

would take it to heart and allow it to affect how they felt about themselves and their

innate ability to mother. Without a doubt, a mother’s emotional well-being is jeopardized

due to autism.

Raising a child on the spectrum also produces conflicting emotions. For example,

mothers and fathers report feeling the emotions of happiness and sadness, hope and fear,

thankfulness and anguish (Myers et al., 2009). The range of emotions experienced is vast.

Emotions associated with depression and anxiety are also typical (Murphy et al., 2007).

As previously mentioned, there is a correlation between caregivers, ASD, and mental

health. It comes as no surprise that caregivers suffering from mental health concerns also

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report experiencing a lower quality of life (Vasilopoulou & Nisbet, 2016). Autism

permeates every aspect of their lives and every emotion they feel.

Emotionally speaking, a lower quality of life leads to more distress and pain.

Caregivers also experience anger and frustration. When surveying a wide array of

parents, it was found that couples with autistic children experienced more aggravation

than parents both with and without children with other disabilities (Mao, 2012).

However, while many individuals experience these negative emotions, like previously

alluded to, some gather great joy and purpose from parenting a child with ASD. The

older the parents are the more positively they are impacted by ASD (Barker et al., 2011).

Of course, mothers still face emotional challenges, but they are more likely to overcome

these challenges with an optimistic frame of mind as they age. Indeed, autism has an

impact on the emotional health, both positive and negative, of caregivers.

Gaps in the Literature

While research on the effects of autism on caregivers is expansive, there are a few

gaps in the literature that should be considered. By identifying these short comings, one

would hope that the research would be able to be more comprehensively evaluated. To

start, a prominent deficiency in the existing literature is that of adequate sample sizes

(Allik et al., 2006; Banach et al., 2010; Benson, 2017; Blackledge & Hayes, 2006; Brobst

et al., 2009; Dyches et al., 2015; Factor et al., 1990, Garcia-Lopez et al., 2016; Hutton &

Caron, 2005; Keenan et al., n.d.; Kersh et al., 2006; Lee et al., 2009; Padden & James,

2017; Phelps et al., 2009; Rao & Beidel, 2009; Robinson & Neece, 2014; Ruiz-

40

Robledillo & Moya-Albiol, 2015; Ruiz-Robledillo et al., 2014b; Singer et al., 2007). This

was especially true for the quantitative studies examined.

Second, many of the survey instruments employed in the aforementioned studies

were self-reported measurement tools (Bodenmann et al., 2007; Boyd, 2002; Chan &

Sigafoos, 2001; Dyches et al., 2015; Gouin et al., 2016; Kogan et al., 2008; Ruiz-

Robledillo et al., 2014a). This is a drawback to the credibility of the research seeing that

self-reported measures may not always yield objective results. The current study will not

use a survey instrument. The researcher will conduct in-depth interviews and ask

questions regarding what participants’ knowledge of the various effects of ASD on

differing aspects of caregivers’ lives. Providers will be communicating what they know

of these effects from their perspective. An additional weakness is that many of the

quantitative studies failed to have a control group against which they compared findings

(Blackledge & Hayes, 2006; Robinson & Neece, 2014; Ruiz-Robledillo et al., 2014b).

Without a control group, it is difficult to generalize the findings.

Other limitations of past studies include failing to examine the effects of autism

across various demographic and ethnic backgrounds (Allik et al., 2006; Benson, 2017;

Brobst et al., 2009; Dyches et al., 2015; Ekas et al., 2008; Harper et al., 2013; Kersh et

al., 2006; Myers et al., 2009), making the results not generalizable to these populations.

This research study will include providers who have worked with caregivers of various

demographic and ethnic profiles.

Moreover, most of the studies to date do not have a comprehensive view of how

autism affected the caregiver. Instead, prior researchers had conducted investigations on

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how specific aspects of the caregiver’s life was influenced. There were no studies that

examined the total effect of ASD on the caregiver. This research study will again aim at

filling this gap as it will consider the caregiver as a whole person when viewing the

implications of ASD. The studies reviewed did not consider the length of time that

caregivers had been tending to their child with ASD. Simply put, there was not an

evaluation of the amount of experience that one had caring for their autistic child. This

study will fulfill these requirements as it will seek to engage a variety of professionals

with vast amounts of experience, ensuring that the providers interviewed will have had

copious amounts of contact with a wide variety of caregivers. Lastly, past studies did not

examine the effects of autism amongst providers. No such study in the literature asked

professionals of how they were impacted by ASD across differing aspects of life.

Obviously, this study will fill this gap as it will ask providers what the effects of ASD are

to them personally, as well as to the caregivers that they have encountered.

Summary

This section covered the history of ASD. The literature was extensively

examined, and little was found regarding the impact of ASD on professionals. Research

was found however on the effects of ASD upon caregivers. The next chapter will focus

on the methodology used to obtain information from the providers about the impact of

autism on both the professionals’ and the caregivers’ lives.

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Chapter 3

METHODOLOGY

In this chapter, the methodology used in discerning the effects of autism spectrum

disorder (ASD) on caregivers is described. The research question and research design are

considered in this section, as well as the study objective and study design. Sampling and

data collection procedures are also discussed. The instruments used and the methods of

data analysis are presented. Finally, a discourse of how the human subject’s safety and

rights were protected is explained.

Research Question

This study seeks to explore the following research question from a provider’s

perspective: What are the effects (spiritual, emotional, physical, financial, and relational,

etc.) of ASD on caregivers?

Research Design

This research study uses a qualitative content analysis design, employing latent

and manifest coding. The qualitative approach, grounded theory, and content analysis is

described.

Qualitative Approach

An exploratory qualitative design was utilized to effectively answer the research

question. Qualitative designs are particularly effective when attempting to explore the

reasons why a phenomenon occurs. This study sought to understand the effects, both

positive and negative, of caring for individuals with ASD. Oftentimes the voices of

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providers are silenced and their perspectives are not considered in evaluating the

consequences of ASD. By utilizing a qualitative design, this study sought to shed light on

the provider’s perspectives. Stein and Mankowski (2004) assert that revealing the voice

of the disenfranchised is one purpose of qualitative research. Furthermore, a qualitative

research design was used due to the holistic nature of the study (Ritchie & Lewis, 2003).

Lastly, a qualitative design permits the researcher to explore the experiences of

caregivers, while comparing these narratives to various providers.

There are many advantages to the qualitative design. Qualitative designs place

great importance on communication between the academic and the participant (Stein &

Mankowski, 2004). This interplay allows the researcher to be personally invested in the

study. Qualitative designs are also more flexible than quantitative designs (Griffin, 2004;

Rubin & Babbie, 2017). They permit the scholar to probe deeper into the meanings of

participants’ answers. They also allow the researcher the opportunity to tackle sensitive

issues with their subjects (Griffin), because products of quantitative data are discrete and

continuous data whereas the result of qualitative data is a comprehensive view of an

individual’s experiences. Indeed, academics can detect the small distinctions in a

participant’s attitudes and behaviors through their use of questioning by exploring

phenomena in complexity (Rubin & Babbie). These benefits enhance qualitative designs.

Additionally, qualitative designs grant scholars the opportunity to engage with

their candidates from a person-centered perspective. These designs allow researchers to

take part in a non-judgmental, fully empathetic stance when interviewing subjects

(Ritchie & Lewis, 2003). Intellectuals have the freedom to conduct their studies from a

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natural setting conducive to the participant’s experiences of the research phenomena,

compared to the extremely impersonal and strict stance of data collection employed

through a quantitative design (Ritchie & Lewis). Investigators conduct their studies from

a place of curiosity through qualitative research (Rubin & Rubin, 2005). Qualitative

research also transcends the barriers of differing socioeconomic statuses (Rubin & Rubin)

because of the design’s ability to connect with people on a deeper level.

While it is evident that there are many advantages to qualitative research, there

are also some distinct drawbacks. For example, collecting this type of data is time-

consuming when compared to quantitative methods. Because of the small sample size

often used with qualitative research, many academics view it as less credible than

quantitative research, which relies on a wider array of subjects (Griffin, 2004). Because

of this, qualitative research has a low level of generalizability (Bickman & Rog, 2009;

Rubin & Babbie, 2017). Some suggest that the collection of qualitative data serves the

biases of the researcher; others contend that the lack of statistical manipulation of the data

is a negative aspect of this type of research.

Grounded Theory

In collecting data utilizing a qualitative approach, grounded theory is applied.

This type of theory is inductive, claiming that the researcher’s observations can form

theories from the data collected (Martin & Turner, 1986). It is important to note that in

grounded theory the collection of data is essential, as a hypothesis cannot be formed

without first gathering information that leads to the support of the hypothesis.

Referencing the collection of data, many qualitative researchers use a social

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constructionist perspective. This approach asserts that reality is interpretative and should

be viewed in its context (Creswell & Miller, 2000). According to this framework, each

person’s experience creates a different lens through which reality can be understood. This

approach will be utilized in this study as the researcher will ask participants for their

personal views on how ASD impacts caregivers; each person’s socially constructed

version of truth will be considered as one that has value and meaning. An idiographic

approach will also be utilized in the study. Idiographic approaches stress the vitality of an

individual’s thoughts, behaviors, and emotions (Conner, Tennen, Fleeson, & Barret,

2009). Indeed, this method of study is not focused on the group data but on the data of the

individual.

Content Analysis

A content analysis will be employed to decipher the themes and trends gathered

throughout the collection of the data. A content analysis helps researchers translate

qualitative data into quantitative data (Rubin & Babbie, 2017). According to Downe-

Wamboldt, the main goal of a content analysis is “to provide knowledge and

understanding of the phenomenon under study” (as cited in Hsieh & Shannon, 2005, p.

1278). There are two types of content to analyze when conducting such an analysis:

manifest and latent content. Latent content codes the meaning of words and phrases

whereas manifest content is a broader type of analysis, focusing on the evident, surface

information presented from the interview responses (Rubin & Babbie). For this study, the

coding will primarily take place using latent content as the aim of the study is to seek a

deeper understanding of participants’ perceptions of the effect of ASD on caregivers.

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However manifest coding, the process of identifying the frequency of a word or phrase is

used in a dialogue (Chapter 11, 2017), will also be used.

There are advantages and disadvantages to performing a content analysis. Among

the benefits, content analysis can be employed when little information is known about the

topic. Additionally, content analysis allows one to gain “direct information from study

participants without imposing preconceived categories or theoretical perspectives” (Hsieh

& Shannon, 2005, p. 1279). This type of analysis centers upon verifiable data (Hsieh &

Shannon) and is an economical approach to studying relationships between variables. A

primary disadvantage of content analysis is that it is low in terms of its validity, as two

academics can interpret different meanings in contrasting ways (Rubin & Babbie, 2017).

It is problematic when the validity of an approach is in question.

Study Population

The study consisted of eleven participants who had assumed responsibility for a

child with autism at some point in their life. Of the eleven participants, nine were

currently employed working with these youth, while the two others had possessed prior

jobs working with these types of children. All participants were required to have at least

one year of experience in the field of caring for an autistic child. Participants worked in a

variety of settings. These settings included schools, churches, and private homes. All the

interviewees worked with a vast age range of clients, for amongst all of the participants,

there was experience working with autistic children ages 0-18. The focus of the interview

was to discover how autistic youth impacted the varying aspects of a caregiver’s life.

Participants answered the interview questions from their own experience, as well as from

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their knowledge of what other caregivers, mainly parents, had shared with them. All

subjects reported that they lived in the greater Sacramento region.

Sample Population

To collect participants, a non-probability snowball sampling technique was used.

Snowball sampling is a method used when the researchers anticipate having a difficult

time locating participants. In snowball sampling, the researcher begins with one

participant and asks them for additional referrals of people who may be interested in

participating in the study. There are advantages and disadvantages to this type of

sampling method. For instance, this type of sampling allows researchers the opportunity

to interview participants who would not typically have had the chance to be interviewed

(Cohen & Arieli, 2011). Additionally, the researcher has the power to decide which

participant referrals to pursue, giving them some control over their sample population

(Biernacki & Waldorf, 1981). Despite these strengths, a weakness of this study is that by

the nature of the referral process, there can be selection bias as respondents typically refer

individuals who are similar to them for research studies (Cohen & Arieli). A similar

weakness of this study is that this method is not generalizable to the public as random

sampling has no place in the snowball sampling procedure.

Furthermore, it is important to discuss the inception of the sample population.

Because this population is difficult to identify based on the regulations for protecting the

privacy of the autistic clients and their families, the researcher decided to start with

providers whom they personally knew. Currently, the researcher provides respite care

work for a client with ASD. she contacted her co-workers to invite them to participate in

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the study. Additionally, the researcher personally knew a high school teacher who has

had autistic children in her class. Using both of these individuals as starting points for the

snowball sample, the researcher gathered additional names of subjects who were

potentially interested in completing the study.

Instrumentation

The measurement instrument (Appendix A) consisted of both multiple choice and

open-ended questions. The multiple choice demographic questions that began the

interview pertained to each participants’ gender, ethnicity, and level of education. A

multiple-choice question about how long the provider had known their client(s) with

ASD was also asked.

Open- ended questions were asked to provide a holistic understanding of the

provider’s perspective on how a caregiver is affected by a child who has ASD. These

questions centered upon the themes of financial, relational, physical, social, emotional,

and mental health effects of ASD on caregivers. Questions about differing support

services and treatment options available for caregivers also were asked (see Appendix A).

Structured interviews are studies composed of predetermined questions asked

consistently to a variety of individuals (Blackburn, 2017). Due to the limited information

on this research topic, this interview style was selected due to specific information

needed to understand a provider’s perspective towards Autism Spectrum Disorder. The

advantage of a structured interview is that it provides comfortability, expected feedback,

and interview preparedness. Comfortability is achieved by the scholar’s ability to build

rapport with the interviewee through conversational questions, therefore providing a

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listening ear to the event. Due to the nature of open-ended questions, ethical boundaries

must be enforced during the interview process to prevent the research participant from

sharing personal information unnecessary to the questionnaire and growing in relational

intimacy with the researcher. With pre-prepared questions, there is an understanding

between the interviewer and the interviewee of expected questions. This allows the

interviewee the opportunity to think through their responses and be ready to participate

(Rubin & Babbie, 2010). One disadvantage of structured interviews is that the intake of

information is limited to the questions asked. If the interviewee were to provide responses

tangent to the topic, it would be exempt due the unrelated answer (Blackburn, 2017).

The validity of structured qualitative interviews in this interview style inhibits the

ability to determine non-numerical data due to smaller interview population size and

types of questions. Such subjective responses also increase the likelihood of researcher

bias (Rubin & Babbie, 2010). Such research can be time consuming with the allotted time

required to complete the interview and is therefore less respected within the scientific

community (Blackburn, 2008). After considering these disadvantages, the researchers

determined that qualitative design was sufficient for the explorative purpose of this study.

Data Gathering Procedures

The researcher began by reaching out to professionals that she had a relationship

with. To obtain the remainder of the referrals, the researcher asked participants for names

and emails of individuals who may be interested in participating in the study. The

researcher’s main method of communication for these exchanges was e-mail. In each

email, the researcher explained the purpose of the study and the fact that the research was

50

a qualitative in nature. After each participant agreed to be involved in the study, the

researcher arranged a time and place to meet the participant (upon the participant’s

choosing, e.g. school sites, coffee shops, and participant’s homes). Upon meeting, the

researcher distributed the informed consent form (see Appendix B) and asked each

individual to fill out the four demographic questions at the top of the questionnaire (see

Appendix A). After this, the researcher asked each participant the 11 interview questions.

The researcher recorded the participant’s responses on a digital recorder and took brief

notes on her password protected computer. The approximate interview duration was 30-

45 minutes in length. After each interview, the researcher sincerely thanked each

individual for their time, insight, and responses; additionally, she sent a follow-up email

communicating her gratitude of their participation

Data Analysis

All digital audio recordings of interviews were transcribed into a word processing

program and analyzed by the researcher. To maintain confidentiality, each interview was

assigned a reference number and each participant was given a pseudonym. The researcher

printed the transcribed interviews and read them thoroughly, highlighting and noting

differing themes, key phrases, and concepts. She also paid attention to the differing

responses between the participants. The researcher read the transcribed interviews in their

entirety in one setting. Through this process, she identified three main themes, as well as

common words and phrases that surfaced. Next, the researcher read the transcript again,

this time reading it using manifest coding. The researcher highlighted, with different

colored markers, the words and phrases that shared the most similarity between the

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interviewees. Upon reading the transcript for the third time, the researcher aimed to

identify the deeper meaning of the significant words and themes that emerged. During

this process, latent content was employed. Coding was determined by common data

themes of the effects of ASD on the multiple areas of a caregiver’s life including:

physical, spiritual, emotional, financial, social, mental health, and supports.

Protection of Human Subjects

The protection of Human Subjects application (see Appendix C) was submitted

to the Research Committee of the Division of Social Work. The study was approved as

“Exempt” with approval number 17-18-010. All of the study’s participants were over the

age of 18; each individual was given an informed consent form (see Appendix A) to

complete before the start of the study. Participants’ contact information, for example

email addresses, phone numbers, and names, were kept in a locked filing cabinet when

not in use. The researcher assigned pseudonyms to each participant to guarantee their

confidentiality. It is important to note that the research study did not produce anonymous

data, but it did yield confidential data. Furthermore, the consent form communicated that

participants may experience minimal psychological risks as a result of their participation

in the study. These results were explained not to be greater than those risks encountered

in daily life. Participants were informed that they could withdraw from the study at any

time without adverse consequences. The location of the interview was at a place of the

participant’s choosing; all subjects consented to having their interviews taped.

All audio data was kept in a locked file cabinet at the researcher’s home when not

in use. The transcribed data and notes from the interviews were kept in a Microsoft word

52

document on the researcher’s password protected computer. When the audio recordings

were saved onto a flash drive, the flash drive was also kept in the locked file cabinet;

furthermore, the printed, transcribed data from the interviews was secured in the file

cabinet. All data was destroyed at the completion of the research investigation.

Summary

This chapter explained the methodology of the study. A review of the study's

research question and research design were explored. A discussion about the qualitative

nature of the study took place; positive and negative aspects of this type of interview

were discussed. A description of a content analysis, the study population, the sample

population, and the instrumentation were all presented. The data gathering procedures,

data analysis, and protection of human subjects were all examined in detail. The next

chapter will focus on the data and how it is was analyzed and presented.

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Chapter 4

DATA ANALYSIS

This chapter will present the study’s findings with detailed descriptions of the

most common themes emerging from interview respondents. This chapter will utilize

manifest and latent content to analyze how tending to a child with ASD is draining, how

caring for a child with ASD creates strain in caregiver’s relationships, and how tending to

a child with ASD has an impact on the caregiver’s emotional life. Direct quotes from

participants will be used to support these themes, consequently providing the narrative

experiences of providers. In the transcription process, all participant’s names were

changed to protect confidentiality. Throughout this chapter, data will be reported with

participant pseudonyms: Emma, Olivia, Michael, Emily, Sofia, James, Zoey, Hannah,

Natalie, Claire, and Macy. The demographics of the participants will be noted, as will the

group’s varying levels of experience working with children with ASD. Throughout this

chapter, the academic literature relating to the aforementioned themes will be discussed.

Chapter four concludes with a description of the study’s overall findings.

The primary goal of this study was to consider the varying ways that a child with

ASD influences a caregiver’s life. Eleven open-ended questions were asked (see

Appendix A) to decipher this impact. The questions centered upon provider’s knowledge

of finances, family relationships, spirituality, physical health, mental health, social life,

and emotional well-being, and how these subsets influenced themselves, as well as

varying caregivers. Subsequent questions asked providers for their knowledge of the

54

treatments and supports available (formal, informal, and groups) for caregivers.

Furthermore, the survey also consisted of four closed-ended questions. These questions

specifically sought to identify the gender, length of work experience, ethnicity, and

education level of each participant. When responding to the survey questions, participants

utilized their professional knowledge, their perspectives of how caregivers are influenced

by children with ASD, and their own personal experiences.

Participant Demographics

A variety of provider types were represented in the study, including teachers,

professional caregivers, therapists, speech pathologists, and ministers. The ethnicities of

those surveyed were mainly Caucasian; however, there were three participants who

identified as African American. Of the eleven participants, one had participated in some

college, four indicated that they had completed their bachelor’s degree, while five

participants communicated that they had achieved their Master’s degree or higher.

Among the subjects, there was a wealth of experience. The shortest time that any one

individual had cared for a child with autism was four years, whereas the longest amount

of time a provider spent caring for this type of youth was over 20 years. The average

length that most subjects had been working with their clientele was approximately 10

years. The purpose of this study was to find out what the effects of autism are upon care

caregivers.

Tending to a Child with ASD is Draining

Amongst the participants, there was an overwhelming consensus on the drain that

autism causes caregivers. Participant’s responses highlighted three main areas of drain:

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financial, mental, and physical depletion. Ten of the eleven subjects mentioned some sort

of financial strain, emphasizing the fact that there are additional costs to raising a child on

the spectrum. Regarding these financial sacrifices, Emma noted that “it would be hard for

two parents to work outside of the home with a child on the spectrum. I think that that is

definitely an implication that would limit their finances.” Moreover, James stated that:

[Autism] is pretty costly. As far as I know there’s a lot more involved than a so

called normal child. I’m talking costs like parents not being able to work because

they need a caretaker and stuff like that. So, I think it is more expensive than

having a child that is not ASD.

Current research supports these presumptions, as the results from a study conducted by

Kogan et al. (2008) indicate that many parents of autistic children scale back the hours

they work or quit working all together so that they can watch over their child. Sharpe &

Baker (2007) and Ganz (2007) report similar findings, noting that parent’s economic

funds are drained due to their responsibilities of raising a child on the spectrum.

Furthermore, Hannah had a similar response. She stated that raising a child on the

spectrum “has great financial implications- both time, [for example] the time that

[caregivers] have to take off work to go to therapeutic appointments, and money

(differing therapeutic expenses and activities).” Participant’s viewpoints assert that ASD

affects caregiver’s employment opportunities, which thereby directly drains their

finances.

Claire spoke of the financial drain that caregivers experience in relation to

medical and therapeutic expenses. She stated that,

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Medications are hugely expensive. Most of these kids [with ASD] are on meds,

and monthly costs are in the thousands. So, depending on their insurances and

things like that, that is a burden- somebody has to come up with that [money] and

most of them, when you bring in ASD, have a cocktail of meds that you are

working with. So that is a huge cost.

Of the costs related to therapy, Claire again commented on the financial depletion that is

experienced in response to ASD. Speaking from a teacher’s perspective, she said,

A lot of our kids have, in addition to the school services that they are provided

[with], private services… And if they don’t have insurance, they are not getting

additional private services [paid for].

Because some insurances will not pay for therapy, speech, language, or behavior services,

parents must rely on their own monetary funds. This is an economic burden on families.

The financial drain that caregivers experience in relation to medical expenditures and the

additional cost of services is well documented. Cidav, Marcus, & Mandell, (2012),

Sharpe & Baker (2007), and Kogan et al. (2008) all emphasized in their research that

those who tend to children with ASD have greater financial needs than the general

population. Without a doubt, providing for a child with ASD drains caregivers’ monetary

funds.

As previously mentioned, the mental health of providers is negatively influenced

by ASD. Providers report that supervising a child with autism is mentally draining, taxing

and frustrating. Michael stated that, in working with autistic youth who possess emotional

disturbances, he “had days where it was just extremely draining.” He said he “would get

57

home from work and feel like [he] didn’t have enough energy but to eat and go to sleep to

start the day over the next day.” Emily communicated that her work with autistic

individuals is sometimes “mentally taxing… frustrating… and mentally draining.”

Likewise, Natalie said that her work can be mentally stressful. Natalie also spoke to the

fact that constant interaction with the discussed population can wear on you mentally.

She went on to explain that she has “actually had some coworkers go out on stress

[leave]” due to their work with autistic clientele. Undoubtedly, there is a correlation

between mental depletion and providing care for a child with autism.

Connected to the mental drain that is experienced by the caretaker and the

provider are the mental health concerns that arise. Upon both the review of relevant

literature, as well as the results of the study itself, most providers admitted to possessing

some level of depression or anxiety. “I have suffered anxiety, frustration, [and]

depression over these kids… feelings of hopelessness [and] sadness…” said Emma.

Hannah explained that the stress of constantly having to be on high alert when caring for

emotionally disturbed autistic children is demanding. Benson & Karlof (2009) have done

research on high levels of stress; they state that the constant state of stress experienced by

caregivers, also labeled as stress proliferation, can contribute to feelings of depression.

Speaking of stress, James shared that “the stress mounts and if a person is not ready, it

will take over… mental health can get bad or go sideways if [caregivers] are not

prepared.”

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Throughout the interview, other participants shed light on instances where they

witnessed increased levels of anxiety and depression amongst parents. Zoey, told of how

she has “seen families really go through depression.” She goes on to state that:

A lot of families have this expectation that, okay, you have this baby and you

know who they are going to be and what sports will they like to play and what

will they like to wear. But you know if you have a child with autism… it is

different. It is not what you planned, you know, you are going through different

challenges and growth spurts and different developmental stages. And I think that

can be an experience that really takes you back and some families really do

struggle with that. So yeah, depression is the biggest [mental health concern] that

I think of.

In her interview, Zoey also spoke of the anxiety that drains caregivers, stating that “when

your kids are younger, there is a lot of anxiety not knowing what is going to happen,

[and] that [takes] a big tole on people.”

In their examination on the relationship between parents, mental health, and ASD,

Lushin & O’Brien (2016) found that, “approximately 50% of parents of children with

ASD have been diagnosed with clinical depression and 41% have been diagnosed with

anxiety disorders” (as cited in Baio (2010) and Bonis (n.d.)). Additionally, scholars

Shivers, Krizova, and Lee (2017) report that caregivers regularly worry about their

children with ASD. If these worries become excessive, it has the potential to develop into

an anxiety disorder (American Psychiatric Association, 2013). In a qualitative interview

on the psychological well-being and coping in mothers of children with intellectual

59

disabilities, Abbeduto and colleagues (2004) discovered that these mothers prioritized the

needs and health of their children before taking care of themselves. This lack of self-care

can be a contributing factor to mental drain, as well as to a variety of mental illnesses. In

all, the effect of ASD on one’s mental health is clearly exhausting. This research study

and the relevant literature support this theme.

To finish reviewing the theme of caregiver drain, it is paramount to discuss how

physically depleting tending to a child with ASD can be. To start, seven of the eleven

participants interviewed were trained in some sort of physical restraint. In percentage

terms, that equates to 64% of the subjects being trained to physically calm down, hold,

and protect a child who is experiencing behavioral and/ or violent outbursts. Certainly,

the participant’s experiences solely in this domain reveal how physically demanding and

draining taking care of a child with ASD can be. Along these same lines, Emma

communicated that, because of the occasional physical restraints needed to help autistic

children calm down, “there might be some physical harm that comes with the job.” Olivia

indicated that the bigger the child, the more physical harm they can do to their elders

during violent outbursts. James also commented on how the size of the child physically

affects the caregiver who is doing restraints. He stated:

I think it can take a toll on a person slowly but surely because the kids, depending

on their age and [how they are] growing… [are] going to get tougher, and they are

going to get bigger and that is something that you have to prepare for.

James also mentioned that physically, being a caregiver to someone with ASD “can be

draining… You could have the cost of your health if you aren’t prepared for what is

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coming.” Claire, a special education teacher at a middle school, commented on the size

and behaviors of one of her students by saying:

We had a child that went from, same behaviors he had since he was a kid, but…

he was this big, and now he is this big, and we were getting beat on everyday- it

was hard. So physically you were getting struck.

Without a doubt, tending to a child with autism is physically demanding, which in turn

lends itself to physical drain.

Another fatiguing aspect of assuming the caretaking role, is the lack of adequate

rest that one receives. Children on the spectrum are known to have sleep difficulties

(Sivertsen, Posserud, Gillberg, Lundervold & Hysing, 2012). A few subjects commented

on how this relates to the caregiver’s physical state. For example, Natalie observed that

caring for an individual with ASD is “extremely physically demanding.” In specific to the

discussed population, she mentioned that “physically there is a lack of sleep- kids with

ASD hardly ever sleep the whole night, so that weighs on the parents.” Macy reflected a

story of one of her close friends that has a kid on the spectrum. Macy recounted:

I have a friend who only sleeps when her kid sleeps because when he is awake, he

could escape the house- he could run away- and then all of the sudden [my friend]

has her kid running through the neighborhood, so it is a fear and then all of the

sudden it is lack of sleep for her.

About the physical drain associated with being a caretaker, Natalie, a paraeducator in the

public-school system, mentioned that one physical consequence is that “a lot of people

are run down and tired.” Natalie said, “you can see [the tiredness] in [the caregiver’s]

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face.” She also mentioned that caregivers get “worn out [because] physically it takes a lot

of energy keeping upbeat… it physically wears.” This is true for parents and

professionals alike.

Like already stated in chapter two, the professional literature dedicated to

examining the physical drain of tending to an autistic child is limited. A few of the

studies to date have focused on how the stress of providing for a child on the spectrum

influences the caretaker’s physical health. Long and colleagues (2004) reported upon how

the chronic stress of caregiving can dysregulate the body. Some studies note that mothers

experience greater physical strain in their body because they are the ones that often

assume primary responsibility of caring for their disabled child (Johnson, Frenn, Feetham

& Simpson, 2011). Also, Caplin and Young (2007), found that “41 percent [of parents

with autistic children] reported that their health had worsened over the past year” (as

cited in Lee et al., p. 228). All this research shows that autism does in fact drain the

physical health of individuals. More research needs to be conducted to support the

experiences that were represented in this research study. Specifically, scholars should

examine how the physicality of behavioral outbursts and a lack of sleep drain the body. In

sum, it is evident that autism drains caregivers. Not only is there a monetary drain, but

the mental health and physical health of caregivers and providers are depleted too.

Strain on Caregiver Relationships

A subsequent theme that surfaced throughout the study was how ASD causes

strain upon caregiver’s relationships. This theme was found to influence two domains of

the caregiver’s relational life- their relationships with their families, and their

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relationships with the community of people around them (i.e. friends). Delving into the

first type of strain that was discovered, Claire stated that the effect of ASD on a

caregiver’s family, “is a huge strain- it can break them.” Hannah notes that the tension of

constantly devoting all of one’s time and energy to a child with autism is “very hard.”

She goes on to say that the act of caring for a child with ASD:

Can adversely affect parent’s relationship with [their] other children. The kid with

ASD [can take] time away from other relationships… [that can result in the

caregiver] not spending time with [their neurotypical] kid so that [they] can spend

time with [their] ASD kid. The cost on other relationships is high.

Emma added that many parents possess “feelings of isolation, regret, and guilt because

[they] don’t have enough time to spend with other children.” Scholarly work supports the

fact that neurotypical children tend to occupy less of the caregiver’s attention. Chan and

Goh (2014) conducted a qualitative study where they interviewed five family systems

composed of one mother, one neurotypical child, and one autistic child. The main

purpose of the study was to determine the impact of autism on the family system, with

special attention being paid to the effect of the autistic child upon the relationship

between the mother and the neurotypical child. Their findings state that, “it is an

undeniable truth that the neuro-typical children in families with an autistic child…

receive less parental attention and may experience differential parental treatment” (p.

156). Cahn and Goh go on to state that these “parents [are] very aware of their lack of

time and attention spent on their neuro-typical children” (p. 160). The results of the study

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indicate that there is a lack of satisfaction in relational intimacy experienced by parents

and neurotypical children; certainly, this burdens the caregiver.

Other scholars report similar findings. According to Sivberg (2002), having a

sibling with autism increases levels of familial stress amongst brothers and sisters. Again,

Mchale, Sloan, and Simeonsson (1986) note that brothers and sisters of autistic youth

struggle with feelings of parents showing favoritism towards their disabled sibling. These

children also have been said to experience feelings of rejection from their parents.

Furthermore, Mchale et al. even note that these adverse emotions felt by neurotypical

children can have a negative effect on their connection with their autistic sibling.

Without a doubt, autism influences the quality of relationships between parents and

their other children. This complex connection causes strain and stress upon the

caregiver.

The respondents also mentioned the relationship between caregiver stress and the

family system. Olivia discussed the stress that ASD can cause for the family unit when

she remarked that the dynamic between parents and ASD children can be taxing for other

kids in the home. Macy explained how caregivers have the tendency to hyper focus “on

the child who has the disability and the whole family focus tends to go towards that

direction,” thereby indicating that tending to a child with ASD occupies all the parent’s

attention, leaving them little time or energy to spend with the rest of their family. As

noted earlier, this notion of focusing all of one’s attention onto the child with ASD is

common, and it proves to negatively impact the caretaker’s connection with others in

their household.

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Emily also commented on the familial discord experienced by caretakers when

she noted that an effect of constantly supervising a child on the spectrum can be

frustrating. Emily embellishes on this statement by explaining how the emotions of stress,

frustration, and disappointment felt by caretakers “even can extend to the family,

unintentionally, when [the parents] have much going on, things build up and they might

lash out [on the family and the child with ASD] when [they] don’t mean to.” Sofia noted

something similar when she explained that caregivers “may [sometimes] take their

frustrations out on the child [with ASD], or on their loved ones, or on their spouse.”

Emma recounted her own personal experience as a provider stating the following:

As for me I would be somewhat frustrated… and so when I would go home to my

family, my frustration might result in me being a little sharper with [my family].

[I found myself] just kind of wanting to withdraw a little bit. [It’s] just a lot of

frustration on my part that has to come out somehow, someway.

The stress of caring for an autistic individual can cause the displacement of

caregiver’s irritations. Further explaining the correlation between stress, autism, and the

family unit, Sivberg (2002) notes “that the level of strain on the family system was

greater in the families with a child with an ASD [diagnosis]” (p. 397). Seemingly fitting

this theme into the ecological systems theory, as discussed in chapter one, is the tenant

that there is a strong relationship between the person and the environment surrounding

them. Clearly, provider’s experiences and professional literature both point to the fact

that autism can indeed result in relational struggles between the caregiver and their

surrounding environment which is their family.

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Relational strain is also reported to impact the marital relationship. Much research

has been conducted and evidence shows that strained marriages are common amongst

parents who raise autistic youths (Freedman, Kalb, Zablotsky, & Stuart, 2011). Further

analysis also indicates a lower marital satisfaction rate, caused by the daily stress of

raising a child on the spectrum (Bodenmann, Ledermann, & Bradbury, 2007; Brobst,

Clopton & Hendrick, 2009). Zoey and Macy expressed a similar motif when being

interviewed. Both discussed the feeling of isolation felt by caregivers, noting the

difficulty of connecting with others due to a caretaker’s excessive responsibilities.

Illustrating this, Macy stated that, “sometimes it is really hard to connect, and

[caregivers] start to feel isolated, and when [caregivers] feel isolated, a lot of things can

have an effect with the relationships with the people around [them].” Woodgate, Ateah,

and Secco (2008) researched specifically how isolation can influence the caregiving

dyad. In their study, they found that caregivers of autistic youth sometimes “felt

disconnected from their spouses” (p. 1078). Isolation can lead to disconnectedness, which

can result in less than satisfactory intimate relationships.

As already mentioned, Zoey also discussed the concept of isolation in her

interview. She elaborated by commenting on how the marital relationships can be

strained because of a child on the spectrum:

Whether it be from just your intimate relationship with your immediate family,

for parents I know it can be really challenging, you’re devoting a lot of time to

your child. And also your [spousal] relationship, I know that… the divorce rate

for somebody who has a child with autism is high… so I think that that attention

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going to your child [is not] wrong, but not having that support can be very

isolating.

From these accounts, it is evident that parents sometimes find it difficult to connect with

and invest in their spouse because, as Zoey stated, much of their time and energy is being

dedicated to their disabled child.

Caregivers have also been found to experience strenuous relationships amongst

their mesosystem- that is their network of friends, social life, and community. According

to the ecological systems theory, the mesosystem accounts for the interaction between

two differing microsystems (Paquette & Ryan, n.d.). The caregiver is a microsystem in

itself, and so is the community (social supports, friends, etc.) that surrounds each parent.

As already noted, ecological systems theory stresses the vitality of person in

environment, that is that a person is directly influenced by their surroundings. Coming up

in both the research of scholarly articles and this study, was the theme of a child’s autism

influencing their caretaker’s mesosystem. For instance, Macy said this about a

caregivers’ relationship with their community of friends:

Your friends might not understand, so that also can dramatically affect your social

life. You might feel like your friends can’t understand, which in most cases they

actually can’t, and a lot of times there is that aspect when you have children, it is

busy, and then when you are affected by a disability its harder. So, I think that it

really can affect your social life. It can affect what you talk about, what you do, it

can affect how you do it, and then you are tied to [your child’s] schedule because

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their schedule needs consistency… when you have a baby who has a disability

such as autism, your social network gets even smaller.

Emma noted something similar when she said that caregivers “have so many other

demands on [them] that [the] friends that [they] may have had before [they] had the

child… those friendships might easily go away because [they] don’t have the time or

energy to put into them.” Michael remarked that caretakers are often “not able to just go

out on a whim and hang out with friends.” Furthermore, James commented that a

caretaker’s relational life can be even more impacted if they are a single parent.

Undoubtedly, Macy, Emma, Michael, and James’ accounts of how the caregiver is

bidirectionally influenced by their mesosystem of friends testifies to the fact that autism

has a negative effect on caregiver’s ties with outside social support.

Respondents’ answers also revealed how tending to an autistic child can

negatively impact a caregiver’s ability to get out of the house, thereby limiting their

ability to connect with the community around them. Emma shared how assuming primary

responsibility of a disabled child is inhibiting. She states that, from the perspective of a

caregiver, the diagnosis of autism “is so confining because many of these kids, you can’t

just take them out [in the community because of] all of [the] sensory input… you can’t

really get out and do much.” Michael added that caring for an autistic child “would make

it a lot more difficult to have a social life.”

Many of the research participants shared their perspective on the correlation

between caregiver burden and these individual’s social networks. Claire discussed this

impact in relation to a lack of respite care services available to parents. She noted how

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without respite care, parents often are not afforded the opportunity to connect with their

friends and surrounding communities:

I think [autism] can be very impairing [for parents. They have] to have somebody

who is there so [they] can go out and have a date with [their] husband or go out

and go grocery shopping without it being a huge production… [or] go out to

dinner with friends or go to coffee somewhere.

Along a similar vein, Emily, a tutor of an autistic child, talked about how she has

witnessed barriers to a parents’ ability to connect with others outside of both the home

and the workplace. She tells of how parent’s interactions with their friends are limited

due to an autistic child’s inability to be left alone. She goes on to state that many parents

“have a child that is so low functioning that they can never be left alone- that definitely

puts a strain on [the parent’s] social life because [they] have to make sure there is

someone there to watch [the child].” As participants have communicated, there is

undeniably a relational strain between caregiver’s social relationships in the mesosystem

and a child’s autism.

Yet again, scholarly research is congruent with the participant’s perspectives in

this research study. From their qualitative study on mother’s perspectives of ASD upon

the family, Nealy, Ohare, Powers & Swick (2012) discovered that many mothers:

Reported [that] they had few remaining social ties since their child’s diagnosis.

[These] impacts were discussed in terms of a decrease in quantity and quality of

relationships. Reasons for social deprivation included a sense that the mothers

could no longer relate to old friends, a lack of time to spend socially, an inability

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to bring children to social gatherings due to behavioral concerns, and a fear of

judgment or stigmatization” (p. 196).

Myers and colleagues (2009) present similar findings. Many parents in the Myers’ et al.

analysis communicated that they too underwent a loss of their social life and a rejection

by their friends. Other scholarly works indicate that caregivers to kids on the spectrum

are more inhibited in their recreational, social, and familial activities (Phelps et al., 2009;

Rao & Beidel, 2009). A mother in the Myers et al. study put it this way, ‘‘’We pretty

much stay at home, there is no eating out at restaurants, no family vacations, [and there

are] very few family outings’’’ (p. 680). Indeed, by being confined to the home and

shunned by their communities, parents and providers alike possess a greater chance of

being socially isolated from those around them. This, in turn, significantly strains

caregiver’s relationships with their community.

Impact on Caregiver’s Emotional Life

The last theme to emerge from the study, is that raising a child with ASD does

indeed have an emotional impact on the caretaker’s life. The effects of autism on a

caregiver’s emotional life are vast; participants and scholarly literature both report this

and emphasize how caretaker’s emotions can fluctuate in a variety of ways due to their

jobs and primary functions. Words providers used to explain the impact that caring for a

child with ASD had on their emotional life include words like: “fear, sadness, joy, ager,

angst, worry, grief, happiness, excitement, frustration, thankfulness, and acceptance.” As

evident, caregivers experience a wide range of emotions while tending to their child with

autism.

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With this, it is interesting to note, that many participants communicated how they

felt both positive and negative emotions during their stint of caretaking. Emily

summarized caregivers’ responses when she stated that, emotionally, taking care of a

child with ASD is a roller coaster. Her experience is as follows:

My opinion, and just from all of the experience that I have had, [the experience of

caregiving being a roller coaster] is the best way to describe it, because you have

some really big ups where you get really excited, but it also comes with some

really big downs too where it can be just kind of very defeating.

Hannah reiterated this theme by saying that parents of autistic youth have “more highs

and more lows than other parents.” Again, illustrating the emotional fluctuation

experienced by caretakers, Zoey said the following:

I feel like caring for somebody with ASD can be very challenging. I feel that there

are lots of ups and downs. I think that as somebody who works with individuals

with autism, I feel like I am bipolar sometimes. I am so excited that this just

happened, or it is really devastating when something happens, and it didn’t work

the way that you wanted it to happen… I just think that it is a roller coaster.

Undeniably, the personal occurrences of these providers prove that caring for a child with

ASD can significantly affect one’s feelings and emotional functioning, both in positive

and negative ways. Furthermore, the fact that caregivers experience a range of emotions

is robustly supported by evidence from a variety of qualitative studies. Myers et al.

(2009), found that parents of autistic children reported feeling delight and happiness, as

well as “grief, depression, guilt, and blame” (p. 673). Larson (1998) discovered that these

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same, core contradictory emotions were experienced by parents of children who

possessed varying intellectual disabilities.

In addition to the aforementioned influences, some providers declared that they

felt emotional drain as a direct result of caring for an autistic youth. Macy discussed this

in her interview, as did Michael and Zoey. “I think [caring for an autistic child] definitely

has the potential to weigh on you emotionally. I know in personal instances I’ve had days

where it was emotionally challenging,” Michael said. Zoey commented on how fatiguing

and taxing it can be to work with a nonverbal child. She stated:

You know one thing that really comes to my mind is working with students who

are nonverbal and are less interested in the social aspects of someone. You know

if you are working with someone who doesn’t give anything back, and you are

putting twice as much energy in to get a response, it can be draining, and it can

feel defeating and I think that if you are a caregiver, and you are going through

that, that is really hard not to have someone who gives that social reciprocity back

to you and I think that that can be really challenging.

Professional literature compares this emotional drain felt by providers to the caregiving

burden experienced by parents. It is known that ASD is an intellectual disability that

produces some of the highest levels of caregiver burden (Mao, 2012). This strain added

on top of an autistic child’s behavioral episodes, plus the lack of ability for parents to

leave the house, all contribute to caregivers feeling emotionally exhausted.

Other feelings that surfaced throughout the course of the interview were those of

grief, fear, and anger. Regarding grief, Macy discussed how many caregivers experience

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sadness and loss related to the lack of developmental milestones that their children

accomplish. Macy said, “some children don’t reach those same milestones, so that is a

grieving process for each of those milestones.” Hannah commented on how the grieving

process may look different for care providers depending upon their culture and spiritual

beliefs. Zoey expanded on this concept when she noted that, “there can be a lot of

grieving stages of having a child with autism.” Fernandez-Alcantara and colleagues

(2016) identified the presence of grief amongst caretakers of autistic youth. They report

this type of grief revolves around feelings of unexpected child loss and sadness. Hannah

also went on to explain how the grief process is cyclical, noting how emotions can

alternate between resilience and doubt.

Furthermore, the emotion of fear presented itself during the study. Claire

speculated “that one of the biggest fears for our kids with real severe ASD, is what is

going to happen when [the caregiver] fails.” Emma also gave voice to this concern. Macy

expressed how some care providers are afraid to take their children out into the public

eye, for they are anxious that others will judge them, or that their child will have a

behavioral meltdown. Research from Koegal et al. (1992) emphasizes that many parents

become anxious when thinking about their autistic child’s future. In fact, the

preoccupation about who will take care of their son/ daughter when they die is the

principle cause of fear for most parents of autistic youth (Murphy, Christian, Caplin &

Young, 2007). Fear and anxiety undoubtedly influence the quality of one’s emotional

life.

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Regarding the emotion of anger, a handful of caretakers communicated that they

witnessed parents experiencing this feeling while on their caregiving journey. For

example, Emma noted that upon a child’s initial diagnosis of ASD many parents fall prey

to anger. Grief is a common counterpart to this feeling. James also mentioned the

emotional effect of anger, stating that it is fairly strong for most caregivers “because the

kids with ASD are going to push buttons and try things and basically make the caregiver

upset.” While not all providers reported knowing a parent who was angry, Mao (2012)

surveyed parents of neurotypical children, parents of children with ASD, and parents of

children with a variety of intellectual disabilities and found that couples with autistic

children experienced more aggravation than their counterparts.

One last impactful emotion that caregivers reported was that of joy. For instance,

Claire shared her perspective on joy when she explained how, as the caretaker, “you are

thrilled with the littlest and simplest and most joyous things, and that is why we do it.

You love these kids, and you love those little accomplishments… they are incredible.”

Similarly, James reported that he receives joy when he witnesses these kids learning

something new, utilizing skills that they have been taught, or communicating effectively

with their peers and care teachers. Continuing on, Emma said, “these kids can give you

great joy.” Zoey commented on how acceptance of the child with ASD and happiness are

related. She states:

I know in a lot of… ways once you have acceptance that all individuals are pretty

cool people, and once you can accept that, and not only accept it but enjoy

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somebody for who they are, I know there are a lot of happy families [and

caregivers].

Surely, happiness and joy are other aspects of the caregiver’s emotional life.

Unfortunately, there is not an expansive amount of literature explaining how these

emotions can result from being a caretaker; however, this study proves that there is a

positive aspect to raising a kid on the spectrum.

Summary

This chapter presented the findings of the research study. These findings were

organized into themes and were analyzed and discussed. Chapter 5 will focus on study’s

conclusions, as well as the researcher’s recommendations for improving the overall well-

being of caregivers. The limitations of the study and the implications for social work

practice and policy will also be reviewed in chapter 5.

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Chapter 5

CONCLUSIONS AND RECOMMENDATIONS

This chapter will explore the study’s conclusions. The three main findings that

transpired as a result of the study reveal that tending to a child with autism (ASD) is

draining, caring for a child with ASD creates strain in caregiver’s relationships, and

tending to a child with ASD has an impact on a caregiver’s emotional life. These themes

will be discussed as they relate to one another, scholarly literature, social work theory,

and to caregivers’ lives. In this section, the researcher will provide recommendations for

improving the overall well-being of caregivers. The limitations of the study and the

implications for social work practice and policy will also be reviewed.

Conclusions

The findings from this study are of value to those in the education field, social

work community, and mental health arena. They can also be useful to society at large as

these findings have the potential to promote empathy and understanding amongst

caregiver’s fellow neighbors, co-workers, extended family members, and friends. The

research question asked at the beginning of the review is as follows: What are the effects

of ASD on the caregiver’s life in terms of: finances, treatments, family relationships,

supports available (formal, informal, and groups), spirituality, physical health, mental

health, social life, and emotional well-being? Most of the existing research focuses on the

child with ASD, not the caregiver. To date, qualitative studies exploring the

comprehensive effect of autism upon caretakers are lacking. This study was formulated to

enhance the research around this topic, providing the perspectives of providers to the

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non-existent literature. Significant findings emerged that established that tending to a

child with ASD is draining, caring for a child with ASD creates strain in caregiver’s

relationships, and tending to a child with ASD has an impact on a caregiver’s emotional

life.

Of the conclusion that raising a kid on the spectrum is draining, the study revealed

that this exhaustion influences caregiver’s finances, mental health, and physical health

conditions. Nearly all the participants communicated that autism is costly, thereby

disclosing that being a parent to a child on the spectrum requires financial sacrifices.

Some of the things that providers perceived parents having to forfeit include things like

having to discontinue work for the sake of being a full-time caretaker and having to face

economic instability in order to pay for the high medical costs associated with an ASD

diagnosis. These costs consist of things like behavioral therapies, medications, and

speech language services. Respondents touched on all the aforementioned sacrifices that

parents have to make in order to support their child, all of which have been found to

unfavorably cause an extract on caregiver’s monetary funds.

Under the same theme of caregiving drain, it was found that those who tend to

children on the spectrum experience adverse effects upon their mental health. Providers

themselves reported mental taxation, drain, and exhaustion. Respondents also noted that

they had witnessed declines in caregiver’s mental health. Most commonly and

significantly, the illnesses of depression and anxiety were quoted to affect the caregiver’s

mental state. Sofia communicated her experience when she stated that caring for a child

with ASD “can be very draining mentally… depression is a common mental health theme

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and so is anxiety.” Regarding the component of physical drain, all participants mentioned

some sort of physical consequence to caring for a child with ASD. Whether it be having

to preform restraints, getting injured on the job, obtaining little to no sleep, or just

physically being worn down and tired, a conclusion that can be reached from this study is

that caring autistic youth is physically depleting.

This negative effect of ASD on a caregiver’s finances, mental health, and physical

health is congruent with prior research. Speaking specifically to the financial drain that

was uncovered in their study, Fletcher and colleagues (2012), reported it was common for

the primary caregiver, principally mothers, to experience disturbances in their financial

gains. These mothers discussed many of the same reasons for financial drain as cited in

this research study. Similarly, Sharpe & Baker (2007) emphasized that parents often put

their financial future at risk so that they can support their child.

The conclusion that tending to a child on the spectrum causes mental drain is also

supported by literature. For example, in their research on caregivers’ relationship with

autism, Lushin & O’Brien (2016) discovered that nearly half of the participants had been

clinically diagnosed with depression and/or anxiety. Mental illness causes psychological

fatigue which can be equated to mental drain. Most of the research dedicated to

discovering the negative consequences of ASD upon one’s body states that the caregiving

experience produces a lot of stress; this has adverse effects on the body (Long et al.,

2004). Caplin and Young (2007) (as cited in Lee et al., 2009) report that many parents

admitted to experiencing a health decline as a direct result of their caretaking

responsibilities. Obviously, this theme illustrates that caregiver drain is not solely

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experienced in one aspect of the caretaker’s life. It proves that autism influences multiple

faucets of their financial stability, mental health, and physical health. Ecological theory

asserts that nothing functions in solidarity. The theory claims that these systems have a

direct impact upon each other. The conclusions from this research project are best

explained by this concept as the discussed theme details how the things in one’s

microsystems are interconnected, thereby impacting the caregiver as a whole person.

Careful scrutiny of caregivers’ relationships revealed that autism causes strain

amongst familial members, as well as the caretaker’s social community. Many

respondents remarked how the caregiver’s primary concern is often the child with autism.

Five of the eleven subjects communicated the effect that this primary relationship has

upon the other children in the home. The consensus was that parents concentrate on their

child with ASD, which leaves them little time to devote to their neurotypical children.

This investment also adversely impacts the marital relationship. Zoey and Macy

described how isolation can develop as a result of a caregiver prioritizing their

relationship with the ASD child. They both stated how isolation can make it difficult to

connect with people, especially significant others. Participants were also in agreement

with the finding that autism damages caregiver’s relationships with their greater social

network, mainly their community of friends. Nine of the eleven interviewees reiterated

this theme, communicating how the disorder particularly affects a parent’s life. Many

experiences were reported that conveyed that parents had to miss social opportunities

with their friends because they could not find respite care for their child. Others told of

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how caregiver’s social networks decreased. This theme conveys that caregivers

experience relational strain in all faucets of their life.

The study’s findings that autism has a negative impact on the caregiver’s

relational life is robustly supported by scholarly work. Siblings are said to struggle with

the lack of attention that they receive from their parents (Mchale, Sloan, & Simeonsson,

1986), and marriages have been found to suffer (Freedman, Kalb, Zablotsky, & Stuart,

2011). Regarding the comprehensive coping patterns of families with an autistic child,

Sivberg (2002) notes that the levels of strain are higher for these families, which impacts

their overall ability to cope as a family unit. This is an impact that autism has upon the

entire family system. Through the lens of ecological theory, Robbins and colleagues

(1998) emphasize that organisms adapt to their universal surroundings. Undoubtedly, the

ecological systems theory explains the influence that ASD has upon caretaker’s

relationships, as well as the caregiver’s surroundings, which is the entire family network.

It was also discovered that caregiver’s experience strain amongst their mesosystems.

Personal accounts from qualitative research give voice to the study’s findings that

caretakers experience much social isolation (Myers et al., 2009). Again, the ecological

systems theory adequately explains this aspect of relational strain.

The last point to emerge from the study was that autism has an emotional impact

upon caregivers; indubitably, the caretaker’s emotional life is influenced by ASD. The

study found that there were both positive and negative emotions associated with this task

of nurturing. Most participants possessed a negative emotional association with tending

to an autistic youth. In her interview, Emma listed the emotions of “sadness, exhaustion,

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frustration, angst, anger, and fear”. All these negative emotions came from one provider’s

experience; this shows the powerful influence that ASD has upon the caregiver’s

emotional life. Other participants were similar in their answers. Not one respondent was

found to have listed strictly positive emotions in their association of ASD and caregiving.

However, while the overall tone was negative, the study revealed that there were some

positive aspects of raising a kid on the spectrum. The emotions of joy, thankfulness, and

acceptance were all communicated. The emotion of joy surfaced quite frequently, with

many participants stating how they felt joy when they witnessed the child making

progress, even if it was small. A conclusion that can be drawn from this study is that a

multitude of differing emotions occur while raising a kid on the spectrum; there are highs

and lows in the caregiving journey.

Again, data analysis and scholarly literature both point to the fact that caregivers

experience differing emotional reactions. According to Mao (2012), there is an intense

level of burden amongst caregivers of autistic youth. This burden often causes emotional

drain, which can lead to the experience of distressing feelings. A handful of sources

support the finding that autism can result in a hopeful outcome; however, these studies

are rare (Khanlou, Mustafa, Vazquez, Davidson, & Yoshida, 2017). A conclusion of the

study at hand is that tending to a child with ASD can bring caregivers great emotional

rewards. More research needs to be conducted, focusing on this finding.

In sum, this study verifies the proposition that autism drains multiple aspects of

the caregiver’s life. No part of the caregiver’s life is isolated from another, further

emphasizing the fact that one’s micro, meso, and macrosystems are all impacted by each

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other. In combination with the existent literature, these findings support the fact that ASD

has a negative effect on caregivers. Hence, the researcher’s initial hypothesis can be

concluded as true.

Recommendations

The outcomes of this thesis project warrant recommendations to future research

studies. These findings can also be used to enhance the knowledge and practice of

individuals in the professions of social work, education, and therapeutic services. These

recommendations are outlined below and are broken up into two differing subsections.

Future Research

Subsequent study should be dedicated to examining the comprehensive influences

of ASD on caregivers. To date, this thesis project is one of the first attempts at exploring

such a concept. Further research, utilizing both qualitative and quantitative designs,

would develop the finding that autism drains, strains, and has a negative impact on the

caregiver. Supplementary research could be used to advance supports for caregivers,

ensuring that these supports address all the needs in their micro and mesosystems.

Also, of benefit, would be gaining greater knowledge of what types of treatments

and supports would be helpful for caretakers. This could be investigated through

qualitative interviews, with parents and providers voicing their needs from practitioners,

and their desires for comprehensive support programs. A finding that was substantiated in

the study is that autism can positively influence the caregiver. It is necessary that this

conclusion continue to be investigated by scholars, so that the more positive outcomes of

caring for a child with ASD can be known. Researchers should consider the rewards,

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favorable feelings, purposes. etc. that caretakers experience because these findings have

not been given enough attention in current literature. Moreover, future research should

also be dedicated to determining the influences that these beneficial results have upon all

aspects of the caregiver’s life.

Another area that should be included in future study is the physical effect of

caring for a child with ASD. Like previously alluded to, research on this subject is sparse.

In fact, all that literature states, is that autism has adverse effects upon the body. Findings

from this thesis project illustrate that caregivers are physically affected by having to

perform hands on restraints of autistic youth. Likewise, their lack of sleep is another

physical concern. Investigators should analyze these physical consequences in depth,

noting specifically how their common symptoms affect the body. Next, an exploration of

caregiver boundaries should be studied. Like proven, caregivers tend to focus all their

attention on the child with ASD. If future research could examine how to be less

consumed by the caretaking role, thereby setting and enforcing better boundaries, then

caregivers may experience more fulfilling relationships with those around them. Last,

research should consider how to best support single parent caregivers. This subject

surfaced during participant interviews; however, most literature focused on coping

amongst the marital dyad. Single caregivers assume more responsibility of their child

with ASD and are under even more strain. Scholars must examine how to best support

single parent homes where autism is present.

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Practitioners of Social Work, Education, and Therapeutic Services

A primary recommendation derived from this study is that professionals working

with autistic youth must begin to view the caregiver as an extension of their client. With

the evidence gleaned from this study, no longer can ABA therapists go into the home

solely to treat the child’s behaviors; they also must build rapport with the caretakers.

Similarly, teachers cannot simply focus on a child’s educational pursuits or behaviors in

the classroom, they also must collaborate with parents. Social workers, educators, and

individuals who provide therapeutic services must not only connect the family with

resources, but they also must give dignity to the caregiver by checking in with them and

offering emotional support. This intervention could look like practitioners having an

allotted amount of time to check in with the caregiver at the end of each treatment session

so that they can ensure that the caregiver is receiving comprehensive support. During this

time, professionals could focus on providing caretakers with psychoeducation and

differing self-care techniques. Also, the dialogue could focus on the child’s successes,

employing a strengths-based style of communication between the professional and the

caregiver.

A secondary recommendation is for practitioners to be more knowledgeable of the

mental health supports available to caregivers. A significant number of participants failed

to identify the specific names, locations, and treatment modalities used in support and

treatment groups. A recommendation is for providers to be educated in these treatment

modalities so that they can refer struggling parents to these resources. Furthermore, the

existing groups need to be more therapeutic in nature. Mindfulness based interventions,

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CBT, ACT, SFBT, and SFT have all been proven to relieve caregiver stress, providing

them with more adaptive coping strategies. This recommendation is especially important

to those in the social work profession, as one of their main responsibilities is to connect

individuals to resources. It is also the social worker’s obligation to apply for grants in

attempts of decreasing the costs of these therapeutic interventions. Mental health

practitioners could also offer counseling on a sliding scale fee. In sum, the main

suggestion is that there needs to be more advocacy work and awareness on the parts of

social workers, teachers, mental health professionals, and treatment therapists, so that

caregiver’s can be better supported, and their mental health needs met.

Limitations

This research study has a handful of limitations that are worthy of consideration.

First, because this thesis project employed a qualitative design, it makes it difficult to

generalize the study’s findings. For example, this study had limited research data due to

the small sample size of 11 participants, all of which were gathered by snowball

sampling. Because of these things, the results are not generalizable to the greater public.

Another drawback of qualitative designs is that there often exists a bias between the

researcher and the study participants. Respondents have the potential to be influenced by

the researcher’s presence; the researcher can sometimes fall prey to interpreting the

results in a manner consistent with their hypothesis. Additionally, qualitative studies are

difficult to replicate due to the specific nature, experiences, and opinions of respondents.

Specifically, this study itself was found to have limitations. One drawback is the

lack of knowledge that surfaced from providers about the supports available for

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caregivers. Most participants could not identify any mental health agencies or support

groups designed to service the caretaker. This lack of knowledge is a limitation because

scholarly research shows that there are indeed clinical supports in place to assist

caregivers. Similarly, there was confusion amongst participants, as well as ambiguity in

the question, that related to the available treatments that exist for caregivers. Many

respondents thought that the question was directed towards treatment options for the

child; therefore, even after explanation, nobody knew of any treatment modalities (ACT,

CBT, SFBT, SFT, mindfulness, etc.) that were available to caregivers. Finally, the study

did not consider the perspectives of parents. Only the prospective of providers were

obtained. This is seen as a major limitation as parents constitute the majority of those

caring for children on the spectrum.

Implications for Social Work Policy and Practice

The rates of autism have been increasing drastically for the past 20 years (CDC,

2016). Considering this, it is essential that the social work profession be intimately

involved in advocating for the people who are affected by the ASD epidemic. To be

effective, practitioners must engage in interventions on the micro, meso, and macro levels

of social work practice. All three levels are essential to making lasting change for those

influenced by ASD. Regarding the micro level, social workers must begin to contemplate

the drain, stress, and emotional effects that raising a child with ASD has upon the

caregiver. If social workers desire to be more effective in their work, they should invest

in the parent because, like already expressed, the caregiver’s level of functioning directly

influences the child. Another micro consideration, is that social workers must employ a

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strengths-based approach when working with children and caregivers. With all the

negative experiences that caregivers face, there is no need for social workers to engage in

deficit-based treatment. Instead, practitioners should be identifying the gifts, abilities, and

accomplishments that each child is making, thereby fostering positive emotional effects,

such as joy, thankfulness, and pride, amongst caretakers.

A lot can be done at the meso level to improve the afflictions of the caregiving

population. For example, social work professionals could commit to educating those in

their community about people with developmental disabilities, emphasizing their inherent

value and worth as human beings. Educators and therapists could collaborate with social

workers in this advocacy work by putting on their own informational programs, whereby

they communicate the meaningful contributions they have witnessed children make in

classroom and therapeutic settings. By championing autistic children in the public eye,

stigma is likely to decrease. This can make caregivers feel less isolated from societal

judgement, which would offer them more support in raising their child. Advocacy would

also assist in creating more authentic mesosystems for caregivers, as their friends and

extended family would be more educated about the disorder and henceforth have a better

perspective of where the caregiver is coming from.

Another intervention that can be incorporated at the meso level is for social

workers to hold agencies accountable to providing regular trainings to those in the

community who are interested in becoming respite care providers. Amongst caregivers,

respite is difficult to find. If social workers could contract with service providers and

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nonprofits, enforcing the implementation of trainings, caregivers would be a lot more

mentally, physically, and emotionally healthy.

Social workers can also promote change on the macro level. This feat can be

accomplished by working to enact policies that provide more funding and resources to

families with intellectually disabled children. These macro level changes would assist

caregivers in being financially supported, so that they do not have to spend a significant

amount of their personal funds to meet their child’s needs. Another area of policy that

social workers can endorse relates to respite care. Professionals can lobby for more funds

to be allocated to this important service, so that caregivers can engage in self-care, taking

needed breaks from their responsibilities. Finally, social workers must fight to keep

existing policies in place that benefit those with disabilities. Although not much,

caregivers do experience some financial relief from policies such as Medical, the

Affordable Care Act, Social Security, etc. Those in the profession must advocate for the

necessary and continued implementation of these policies, so that caregivers are not

completely burdened.

Conclusion

The purpose of this study was to discover the comprehensive effect of autism

upon the caregiver, and to utilize these findings to further develop supports for this

underserved population. It was the author’s aim to provide the human service field with

literature that viewed the effect of ASD upon all aspects of the caregiver’s life. The

study’s findings reveal that autism causes stress and drain in multiple areas of the

caretaker’s life, including, but not limited to, the caregiver’s finances, mental health,

88

physical health, relational health, and emotional health. Scholarly literature supports the

drain of ASD upon all the aforementioned parts of the caretaker’s life; however, an

additional finding emerged from the research study. It was discovered that there are some

positive benefits to raising a child on the spectrum. Further exploration of this finding

needs to take place to promote and establish the encouraging aspects of tending to a child

with autism. This review also provided recommendations for social workers, educators,

and therapists based on the study’s findings. The final chapter specifically addresses how

social workers can enact change in caregiver’s lives from the micro, meso, and macro

levels. Although limitations were present, the study proves valuable to all those who

provide services to autistic children and their families. The insights gained from this

experiment can transform the way that practitioners interact with their client systems.

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Appendix A

Interview Questions

The Effects of Children with Autism Spectrum Disorder (ASD) on Caregivers:

Perspectives of Providers

1. What is your gender?

_____ Male _____ Female _____ Other: Please describe:

____________________________

2. How long have you known a child/children with ASD? ________________

3. What’s your ethnicity?

____ White ____ Hispanic or Latino _____ African American _____ Asian American

_____Native American _____ Native Hawaiians and other Pacific Islanders ____ Middle

Easterners and North Africans _____ Other (Please

describe:__________________________)

4. What’s your level of education?

______ Some High School _____ High School Graduate _____ Some college _____

Bachelor’s degree _______ Master’s degree or higher

The next section, will ask questions about the effects of children with ASD on

caregivers.

5. What is your knowledge of the financial implications of caring for a child with ASD?

6. What is your knowledge of treatment(s) used by caregivers of children with ASD?

7. What is your knowledge of the effect of a child with ASD on a caregiver’s

relationships with their family?

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8. What is your knowledge of the supports available to caregivers of children of ASD?

9. What is your knowledge of the respite care services available for caregivers of

children with ASD?

10. What is your knowledge of supportive networks used for caregivers of children with

ASD?

11. What is your knowledge of the impact that caring for a child with ASD can have on

one’s spiritual life?

12. What is your knowledge of the physical effects of caring for a child with ASD?

13. What is your knowledge of the effect of a child with ASD on a caregiver’s mental

health?

14. What is your knowledge of the effect of a child with ASD on caregiver’s social life?

15. What is your knowledge of the emotional effects of caring for a child with ASD?

16. Do you know of any other caregivers whom you think might be interested in

participating in this study? If not, thank you very much for your time. If yes, please give

me their name, contact phone number and/or email address.

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Appendix B

PARTICIPATION CONFIRMATION/ LETTER OF INFORMED CONSENT

I. The Effects of Children with Autism Spectrum Disorder (ASD) on

Caregivers: Perspectives of Providers

Thank you for considering participation in this survey. My name is Chandler Tinucci;

I am a second year graduate student in the Division of Social Work program at California

State University, Sacramento. You are invited to participate in a research study which

will involve studying the effects of children with austism on caregivers. The purpose of

this research is to gain knowledge of experiences encountered by caregivers; we hope to

use this knowledge to further develop supports for caregivers.

If you decide to participate, you will be asked to respond to a set of sixteen interview

questions while being recorded on a voice recorder. Your participation in this study will

last 30-45 minutes. Risks associated with this study are not anticipated to be greater than

those risks encountered in daily life.

Your participation in this project is voluntary. You have the right not to participate at all

or to leave the study at any time without penalty or loss of benefits to which you may

otherwise be entitled. If you decide to withdrawal at any point, your responses will be

deleted from the audio recorder. There will be no incentives offered in this research

experiment.

92

Any information that is obtained in connection with this study and that can be identified

with you will remain confidential and will be disclosed only with your permission.

Measures to insure your confidentiality are taken very seriously. The audio recording on

which your responses are held will be kept in a locked safe, additional notes will be kept

on a password protected computer. The data obtained will be maintained in a safe, locked

location until August 31, 2018- after the study is completed.

If you have any questions about the research at any time, please contact Chandler Tinucci

at [email protected]. You can also contact my advisor, Maria Dinis at

[email protected]. If you have any questions about your rights as a participant in a research

project please call the Office of Research Affairs, California State University,

Sacramento, (916) 278-5674, or email [email protected].

I, ______________________________________________, agree to be digitally

recorded for the purposes of this study.

I, ______________________________________________, agree to participate in the

research study.

___________________________________________ _______________________

Signature: Date:

93

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