Early Red Flags for Autism Spectrum Disorders in Toddlers in the Home Environment

98 Pages·2015·9.7 MB·English

by  Lorraine Adair Book

Florida State University Libraries
Electronic Theses, Treatises and Dissertations The Graduate School
2009
Early Red Flags for Autism Spectrum
Disorders in Toddlers in the Home
Environment
Lorraine Adair Book
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FLORIDA STATE UNIVERSITY

COLLEGE OF COMMUNICATION AND INFORMATION

EARLY RED FLAGS FOR AUTISM SPECTRUM DISORDERS IN TODDLERS IN THE

HOME ENVIRONMENT

By

LORRAINE ADAIR BOOK

A Dissertation submitted to the
School of Communication Science and Disorders
in partial fulfillment of the
requirements for the degree of
Doctor of Philosophy

Degree Awarded:
Fall Semester, 2009
The members of the committee approve the dissertation of Lorraine Adair Book defended on
August 17, 2009.

________________________
Amy M. Wetherby
Professor Directing Dissertation

________________________
Ann Mullis
Outside Committee Member

________________________
Juliann Woods
Committee Member

________________________
Carla Wood Jackson
Committee Member

The Graduate School has verified and approved the above-named committee members.
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ACKNOWLEDGEMENTS

I am deeply grateful to my major professor, Dr. Amy M. Wetherby, for all of her
guidance and support throughout my doctoral studies. Her dedication to this field, to children
with autism spectrum disorders and their families, and to mentoring doctoral students is truly
amazing. It was such a pleasure learning from and working with my committee members, Drs.
Juliann Woods, Carla Wood Jackson, and Ann Mullis. Their expertise and genuine kindness
guided me through this project and throughout my doctoral training.
I would also like to thank the staff at the FIRST WORDS® Project and all the families
who participate in the project. Without you, this research could not have been accomplished.
Thank you so much to my fellow doctoral students. I could not have completed this task without
your friendship, support, guidance, and encouragement along the way. David, I could not have
finished this study without your expertise and ultimate coding abilities. Of course, your positive
energy and trips to Starbucks aided the process as well. To Caitlin Boyack, my dedicated
undergraduate research coder. Your commitment to this project was remarkable, thank you.
I also have to thank Haley, my faithful canine companion, whose well timed jumps into
my lap as I was sitting at the computer writing, gave me impetus to take a well deserved break.
And our late night walks kept me energized to keep going.
To Linda, your love and support throughout my doctoral studies were unwavering. Thank
you for believing in me whole heartedly, especially on the days when I struggled with that
notion. You have added so much to my life and inspired me to be a stronger and more confident
individual.
To my sister, thank you for the many phone calls lending me words of encouragement,
stories from home, and much needed laughs. Especially nice was when my beautiful niece,
Reese, got on the line to say “I love you Auntie”. Those words warmed my heart every time.
And finally to my parents, whose love, guidance, and support throughout the years
enabled me to succeed at this endeavor. I cannot thank you enough for all that you have done for
me. Mom, thank you for inspiring me to become a speech-language pathologist and sharing so
much of your expertise with me. Dad, thank you for encouraging me to pursue a career in
academia. As you said, this was just one more hurdle to jump in the course of my life, and your
faith in my ability to accomplish that never wavered. I truly appreciate all of the sacrifices you
both have made to enable your children to make their dreams a reality.
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TABLE OF CONTENTS

List of Tables ............................................................................................. v
Abstract ................................................................................................ vi

1. INTRODUCTION ................................................................................. 1

2. METHOD .............................................................................................. 21

3. RESULTS .............................................................................................. 30

4. DISCUSSION ........................................................................................ 44

APPENDICES ............................................................................................ 57

A Instructions for Parents During Video Recording ....................... 57
B SORF-Home Definitions ............................................................. 58
C Human Subjects Committee Approval Letter .............................. 61
D Parent Consent Forms .................................................................. 63

REFERENCES .......................................................................................... 81

BIOGRAPHICAL SKETCH ...................................................................... 91

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LIST OF TABLES

Table 1: Summary of Participant Demographics ................................................... 22

Table 2: Summary of Diagnostic Evaluation ......................................................... 24

Table 3: Summary of Early Red Flags Identified by SORF Studies ..................... 27

Table 4: Mean Frequency of Early Red Flags across Groups ............................... 33

Table 5: Mean Proportion of Early Red Flags across Groups ............................... 34

Table 6: Percentage of ASD Participants Demonstrating Early Red Flags ........... 35

Table 7: Correlations between SORF-Home Behaviors ........................................ 36

Table 8: Correlations among SORF-Home Behaviors and Diagnostic
Evaluation Measures ............................................................................................... 40

Table 9: Correlations among SORF-Home Composites and Diagnostic
Evaluation Measures .............................................................................................. 43

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ABSTRACT

Early detection of autism spectrum disorders (ASD) is crucial to optimizing child
and family outcomes. Most research on the early diagnostic features of ASD has been done in
the clinic environment; therefore there is a need for research on diagnostic features displayed in a
natural environment. Observation of behaviors of young children in their home environment is a
possible way to assist in earlier diagnosis in a less time consuming, less stressful, and more cost-
effective manner for families. The primary purpose of this study was to explore and quantify red
flags for ASD in the behaviors of young children between 17 and 36 months of age (N = 60)
demonstrated in the home environment. Measures on the Systematic Observation of Red Flags
for Autism Spectrum Disorders in Young Children at Home (SORF-Home; Wetherby & Woods,
2009) were coded from video recorded home observation samples of the child interacting with a
parent or caregiver during everyday activities. Overall, the results of this study demonstrated that
early red flags of ASD were evident in the home environment. Seven of the red flags identified
by previous researchers to be evident in the clinic environment (lack of warm, joyful expression
with directed gaze, lack of coordination of gaze, facial expression, gestures and sounds, lack of
response to name, lack of communicative vocalizations with consonants, inappropriate eye gaze,
lack of response to contextual cues, and lack of sharing interest or enjoyment) were also found to
be demonstrated by a majority of children during the home observations. Examination of the
relationship between the early red flags and developmental level revealed no significant
correlations between the red flags and nonverbal cognitive developmental level and medium to
large negative significant correlations between some red flags and verbal developmental level.
Significant correlations were observed between many of the early red flags and ASD symptom
severity on the Autism Diagnostic Observation Schedule (ADOS; Lord, Rutter, DiLavore, &
Risi, 2002). No significant correlations were observed between measures of parent report of red
flags and the early red flags measured in the home environment. The results of this exploratory
study extend knowledge on the nature of red flags for ASD in young children to the home
environment which adds valuable information for both practicing clinicians and families. The
findings also provide promising information on the utility of the SORF-Home as an interactive
screening measure for ASD and offer important implications for early identification of ASD.
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CHAPTER ONE
INTRODUCTION

The prevalence of autism spectrum disorders (ASD) in the United States is now as high
as 1 in 150 children according to the Centers for Disease Control and Prevention (Centers for
Disease Control and Prevention [CDC], 2007). Early detection of ASD is crucial to improving
outcomes and its importance is well documented. Research indicates that a diagnosis can be
made reliably at 24 months of age by experienced clinicians (Lord et al., 1994; Stone et al.,
1999; Woods & Wetherby, 2003) and the stability of the clinical diagnosis is high (Chawarska,
Klin, Paul, & Volkmar, 2007; Cox et al., 1999; Lord et al., 2006). However, many children do
not receive a definitive diagnosis until they are much older. ASD is not usually diagnosed until
the age of 3 to 4 years (Filipek et al. 1999) or even older. The most recent CDC report (2007)
documented the median age for the earliest ASD diagnosis ranged from 49–66 months with data
collected from children’s health and education records at 8 years of age in 14 states. Race
disparities have been found in the detection of ASD with African American children receiving
their diagnosis on average a year and a half later than white children (Mandell et al., 2002). This
later diagnosis can be detrimental to both children with ASD and their families. Early
identification allows children access to intervention as early as possible. This is important
because there is mounting evidence that early intervention is critical for optimizing outcomes for
these children. Research indicates that intervention provided prior to age 3 ½ has greater long-
term effects than later intervention (Harris & Handleman, 2000; McGee, Morrier & Daly, 1999;
NRC, 2001; Scheinkopf & Siegel, 1998).
Later diagnosis can also affect parents and families, as they can experience a range of
emotions, including anger, guilt, or sadness with the realization of later entry into intervention
(Marcus, Kunce, & Schopler, 2005). Parents also need to have diagnostic information as soon as
possible if they are making the personal decision to have another child, as families with one child
with an ASD have a 5% risk of having a second child with an ASD. The diagnostic process for
families of children with ASD is often uncertain, complex, and drawn out (Marcus et al., 2005).
This process is a major source of stress and dissatisfaction for many parents (Howlin & Moore,
1997; Marcus et al., 2005). The route from parents’ early concerns to a definitive diagnosis often
takes several years. Although recent studies have documented earlier ages of diagnosis, the ages
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are still well beyond when parents become concerned and much later than the age at which
children can reliably be diagnosed.
Delay in Diagnosis of ASD
A delay in obtaining a definitive diagnosis of ASD for a child after noting concerns may
happen for several reasons. One reason is that some parents wait a considerable amount of time
before seeking professional help. Parents are often concerned about their child but are unable to
seek help due to limited access to services and specialists, economic hardships, or for emotional
reasons. Currently there are a limited number of specialists with specific ASD knowledge and
specialty centers to perform multidisciplinary evaluations. The available specialty centers
generally have long waiting lists and are usually located in large metropolitan areas making it
difficult for parents. Traveling to these centers can pose economic hardships for a family due to
many factors including the cost, time off from work, and support to care for other children in the
family. This hardship can increase with the possibility of making multiple trips since parents
often must visit numerous professionals before receiving a definitive diagnosis. In a study of 969
children with ASD, rural children received a diagnosis 0.4 years later than urban children, near-
poor children received a diagnosis 0.9 years later than those from wealthier families, and
children who had 4 or more primary care physicians before diagnosis received a diagnosis 0.5
years later than other children (Mandell, Novak, & Zubritsky, 2005).
Parents go through a socioemotional adjustment when learning that their child may have
a disability. Some parents may experience denial, during which they may be concerned about
their child’s development but may not have the resources emotionally to face that their child has
ASD or other developmental disability. Many are fraught with stress, anxiety, fear, shame, guilt
and self-blame that they may have caused their child to have a disability. In addition, they may
not want other family members or friends to find out something may be wrong with their child
for fear of being rejected (Gray, 1994; Hutton & Caron, 2005; Schall, 2000; Smith, Chung, &
Vostanis, 1994). Others may think their child will grow out of it. Parents may also be
experiencing a sense of grief over the loss of the normal child they had hoped and expected to
have. They often go through mourning when faced with the fact their child may have or has a
disability (Kearney & Griffin, 2001; Moses, 1983).
Delays in diagnosis may also occur because of the “wait and see” attitude of the primary
care provider, a lack of knowledge of ASD symptoms, hesitancy to incorrectly diagnose the
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child, and/or or a lack of awareness of the importance of early diagnosis and early intervention.
Shevell and colleagues (2001) found that after parents stated their concerns, pediatricians waited
an average of 15.5 months before making a referral for children who were later found to have
significant developmental delays. Many studies have found that parents are frequently, and
incorrectly, reassured by their primary care provider that there is nothing to worry about, or that
the problem will ‘go away’ (Howlin & Asgarian, 1999; Howlin & Moore, 1997; Hutton &
Caron, 2005; Midence & O’Neill, 1999; and Smith, Chung, & Vostanis, 1994). The American
Academy of Pediatrics (AAP) recently released a clinical report on physicians’ roles in
identifying and evaluating children with ASD. They stated that pediatricians need to be able to
recognize the signs and symptoms of ASD and have a strategy for assessing them systematically,
and must be aware of local resources that can assist in making a definitive diagnosis.
Another contributing factor for a delay in diagnosis of ASD for young children is that
parents do not have concerns about their child’s development. As a result, they either do not seek
out services or do not agree to participate in the diagnostic process in the event another person
raises concerns about their child. Delay in recognition can occur because parents may lack
knowledge about typical development in young children. Wetherby et al. (2008) reported that
parents of children 9-24 months are fairly accurate at reporting current developmental milestones
but they are not very accurate in reporting concern about their child’s development relative to
what should be expected at their child’s age. Delay in recognition can also occur because some
families may not take their child to regular pediatric checkups due to economic hardships or
living in a rural area with limited access. Lower income families are more likely to not be
insured or to have insurance that does not fully cover needed services (Dubuy & Kenney, 2001;
Rosenbach, Irvin, & Coulam, 1999; Starfield & Shi, 2004). A number of studies have also found
that children in rural areas have less access to health care (Cohen & Hesselbart, 1993; & Slade,
2003).
There is a pressing need for professionals to work closely with other professionals and
families to reduce the time between first concern and diagnosis for young children with ASD and
to provide consistent information to families. Whether the concern is first noted by a parent or
professional, a timely entry into the diagnostic process is crucial.

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