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Understanding lag time in children with autism spectrum disorders

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Understanding lag time in children with autism spectrum disorders
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Wilson, Jeremy Michael ( author )
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Autism spectrum disorders ( lcsh )
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Early identification of children with Autism Spectrum Disorders (ASD) can lead to earlier access to evidence-based intervention programs and services. The purpose of the current study was to identify lag time experienced by children with ASD as well as factors that may increase or decrease lag time. Factors of interest included Autism Diagnostic Observation Schedule - Second Edition (ADOS-2) Comparison Scores, family history of mental health, behaviors of concern, access to special education services, referral sources, and parental education level. One hundred twenty children with ASD ages 2 to 14 were identified at a small, private clinic in a large city in the western United States and data were collected via a retrospective review of records. Results indicated that children with ASD identified for this study did not receive a diagnosis until 3.988 years after parents initially reported concerns. A significant positive correlation was found between access to special education and lag time. Implications for lag time and early identification of ASD are discussed.
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Thesis (Psy.D.)--University of Colorado Denver.
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Includes bibliographical references.
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by Jeremy Michale Wilson.

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Full Text
UNDERSTANDING LAG TIME IN CHILDREN WITH AUTISM SPECTRUM
DISORDERS
by
JEREMY MICHAEL WILSON B.A. University of Colorado-Boulder, 2012
A thesis submitted to the Faculty of the Graduate School of the University of Colorado in partial fulfillment of the requirements for the degree of Doctor of Psychology School Psychology Program
2017


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2017
JEREMY MICHAEL WILSON
ALL RIGHTS RESERVED


Ill
This thesis for the Doctor of Psychology degree by Jeremy Michael Wilson has been approved for the School Psychology Program by
M. Franci Crepeau-Hobson, Chair Bryn Harris Colette B. Hohnbaum
Date: May 13, 2017


iv
Wilson, Jeremy Michael (PsyD, School Psychology Program)
Understanding Lag Time in Children with Autism Spectrum Disorders Thesis directed by Professor M. Franci Crepeau-Hobson
ABSTRACT
Early identification of children with Autism Spectrum Disorders (ASD) can lead to earlier access to evidence-based intervention programs and services. The purpose of the current study was to identify lag time experienced by children with ASD as well as factors that may increase or decrease lag time. Factors of interest included Autism Diagnostic Observation Schedule Second Edition (ADOS-2) Comparison Scores, family history of mental health, behaviors of concern, access to special education services, referral sources, and parental education level. One hundred twenty children with ASD ages 2 to 14 were identified at a small, private clinic in a large city in the western United States and data were collected via a retrospective review of records. Results indicated that children with ASD identified for this study did not receive a diagnosis until 3.988 years after parents initially reported concerns. A significant positive correlation was found between access to special education and lag time. Implications for lag time and early identification of ASD are discussed.
The form and content of this abstract are approved. I recommend its publication.
Approved: M. Franci Crepeau-Hobson


V
TABLE OF CONTENTS
CHAPTER
I. INTRODUCTION 1
II. LITERATURE REVIEW 3
III. METHOD 9
IV. RESULTS 15
V. DISCUSSION 18
REFERENCES 23
APPENDIX 26


1
CHAPTER I INTRODUCTION
Problem and Significance
Autism Spectrum Disorder (ASD) was discovered in 1943 by Kanner, defining the symptoms as extreme autistic aloneness, abnormal speech with echolalia, pronominal reversal, literalness, and inability to use language for communication; and monotonous, repetitive behaviors with an anxiously obsessive desire for the maintenance of sameness (Wolff, 2004, p. 203). Factors influencing ASD have been hypothesized since its discovery, with attempts to link ASD to numerous childhood disorders and experiences, such as childhood schizophrenia, highly intelligent parents, refrigerator parents, and children with brain damage and intellectual disabilities (Wolff, 2004).
Asperger joined the discussion in 1944, describing four children whom he believed to have autistic psychopathy of childhood (Wolff, 2004). These children often had cognitive gifts in mathematics or sciences, but struggled with social and emotional functioning. Specifically, they lacked social reciprocity, had stereotypic behaviors, and exhibited restricted interests. Asperger noted that the condition could be recognized in early childhood and continued throughout the childs lifetime (Wolff, 2004). Kanners and Aspergers early definitions and noted symptoms of ASD have not changed much over time, as ASD is now defined as a neurodevelopmental disorder that affects the domains of social interaction, communication, and repetitive or stereotypic behavior (Newschaffer et al., 2007). It is also accepted that these symptoms begin to present before 3 years of age (Smith, 1999). These three social domains are found in the Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (DSM-V) diagnosis criteria for ASD, which will be discussed in detail in the Literature Review below (American Psychological Association, 2013).


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The Centers for Disease Control reports the prevalence of ASD to be 14.6 per 1,000 children, which equates to about 1 in 68 children presenting with ASD for the surveillance year of 2012 (Christensen et al., 2016). Although the prevalence for 2012 is very similar to the prevalence equated in 2010 (14.7 per 1,000, 1 in 68), ASD prevalence has increased greatly since the year 2000 when ASD had a prevalence of 6.7 per 1,000 children (about 1 in 150 children).
The undeniable increase in prevalence reinforces the need for research focusing on ASD and the need for early intervention for children with the disorder. Therefore, this research paper examines the lag time between parents first concerns and their childs first ASD diagnosis with the following research questions:
1. What is the length of time between parents initial concerns and the diagnosis of Autism Spectrum Disorder?
2. What is the relationship between symptom severities as measured by the Autism Diagnostic Observation Schedule Second Edition (ADOS-2) Comparison Scores and length of time between initial concerns and diagnosis?
3. What factors are related to the amount of time between initial concerns and diagnosis?
This study aims to clarify the relationship between ADOS-2 Comparison Scores and time lag to diagnosis with the hypothesis that more severe symptomology will be related to less time lag between parents initial concerns and a diagnosis of ASD. In addition, this paper aims to identify additional factors that are related to the amount of time between parents initial concerns and ASD diagnosis. In this way resources, systems, and/or areas of communication that may foster shorter time frames might be identified so that children with ASD can receive much needed early intervention.


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CHAPTER II LITERATURE REVIEW
Autism Spectrum Disorder
Individuals with Autism Spectrum Disorder (ASD) struggle with social communication, comprehension and pragmatic language, repetitive behaviors, adaptive behaviors, and social reciprocity (Kroncke, Willard, & Huckabee, 2016). The Diagnostic and Statistical Manual of Mental Disorders-Fifth Editions (DSM-V; American Psychological Association [APA], 2013) diagnostic criteria for ASD include a number of social deficits. Specifically, the person must exhibit persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following: (1) Deficits in social-emotional reciprocity, (2) Deficits in nonverbal communicative behaviors used for social interaction, and (3) Deficits in developing, maintaining, and understanding relationships (APA, 2013, p. 50). These three deficits make up the social communication impairment part of the diagnosis and can be specified using a severity rating of Level 1, 2, or 3. Level 1 represents Requiring support, Level 2 represents Requiring substantial support, and Level 3 represents Requiring very substantial support.
The second set of diagnostic criteria for ASD found in the DSM-V includes restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following: (1) Stereotyped or repetitive motor movements, use of objects or speech, (2) Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior, (3) Highly restricted, fixated interests that are abnormal in intensity or focus, and (4) Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment (APA, 2013, p. 50). Restricted, repetitive patterns of


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behavior can also be qualified using the same severity level rating as social communication impairment (Level 1, 2, or 3).
Prevalence of Autism Spectrum Disorder
Autism is now the fastest growing developmental disorder, with an increase of 23% from 2006 to 2008 and an increase of 78% from 2002 to 2008 (Kroncke et al., 2016). The DSM-V recently combined Asperger Syndrome, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), and Autism into one Autism Spectrum Disorder in 2013. This change may cause a slight increase in prevalence moving forward due to the inclusion of children who would have been diagnosed with Asperger Syndrome or PDD-NOS in ASD statistics. Regardless, statistics of ASD prevalence prior to 2013 are alarming.
Identification of Autism Spectrum Disorder
Knowing that ASD affects social communication and behavior, assessment and identification of ASD relies on open-ended social interactions and observations. Although assessment of ASD can look much different than assessment of cognitive skills, diagnosis is still based in standardized assessments, such as the Autism Diagnostic Observation Schedule Second Edition (ADOS-2; Lord et al., 2012) or Autism Diagnostic Interview Revised (ADI-R; Rutter, LeCouteur, & Lord, 2003, 2008). Research surrounding the ADOS-2 is quite strong as Sappok et al. (2013) found the ADOS-2 to be a very sensitive measure, with 100% sensitivity for ASD and 85% sensitivity for autism.
Early Intervention
Each individual diagnosed with autism generates approximately $3.2 million in costs to society over the course of his or her lifetime, according to a report from the Archives of Pediatrics & Adolescent Medicine (Autism Costs, 2007). Thus, it is critical that individuals with ASD be identified and supported as early as possible. Studies have emphasized the


importance of early intervention for children with ASD since the 1980s (Newschaffer et al., 2007).
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Research studies have repeatedly found that children with autism make major gains with early intervention (Smith, 1999). Corsello (2005) compared many programs such as the TEACCH Home Program (Ozonoff & Cathcart, 1998), Discrete Trial (Lovaas, 1987), Applied Behavior Analysis (Harris & Handleman, 2000), The Greenspan Model (Greenspan & Wieder, 1997), and The Denver Model (Rogers & Lewis, 1989) and concluded that children with ASD make greater gains in positive affect, pragmatic communication, and interpersonal interactions when they begin intervention programs at younger ages ideally before the age of 4-5 years.
Based on research results, Rogers (1996) concluded that children with ASD benefit most from interventions that begin between ages 2 and 4 as they end up making far more progress than older children who receive the same interventions. Rogers also noted that children with ASD are able to make more rapid gains than young children with neurodevelopmental disorders, suggesting that there is a critical period for intervention with children with autism between the ages 2-4 (1996).
Wong et al. (2005) recently completed a comprehensive evidence-based practice review that identified twenty-seven practices as meeting their criteria for being evidence-based in the intervention of individuals with autism ages 0-22. The majority of research was conducted with children with autism ages 6-11, with preschool age (3-5) also having a large amount of research to draw from. These evidence-based practices primarily focused on communication, social interaction, challenging behaviors, play, school readiness skills, pre-academic/academic skills, and adaptive self-help skills, showing that early intervention in children with ASD has a wide-variety of evidence-based curriculum and interventions. Given


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the evidence-based effectiveness of early intervention found in multiple studies, it is clear that early intervention for children with autism is crucial. With an increased understanding of lag time between initial parental concern and a diagnosis of ASD, children with autism are more likely to receive evidence-based interventions at a younger age.
Applied Behavior Analysis and Behavior Modification
B.F. Skinner is credited with the creation of behavior modification and defines it in his 1974 book, About Behaviorism, as the philosophy of the science of human behavior (1974). Skinner discovered the principles of behavior in research involving pigeons and rats, believing that these principles were applicable to all species, including human beings (1953). Skinner then transitioned to verbal behavior, focusing on echoics, mands, tacts, and intraverbals; or reinforced bids for conversation (1957). Skinners work provided the foundation for the development of Applied Behavior Analysis (ABA). Baer, Wolf, and Risley (1968) defined ABA as the direct application of the principles of behaviorism to the improvement of human behavior. Although ABA began with the aim of improving all human beings and human behaviors, a 2012 review of existing literature concludes that ABA has significantly narrowed its focus to persons with developmental disabilities, such as individuals with autism, fetal alcohol syndrome, and Down syndrome (Axelrod, McElrath, & Wine, 2012). Early intervention in the form of ABA as early as 22 months of age can help to improve intellectual functioning, language development, and adaptive behavior of children with ASD (Virues-Ortega, 2010).
Lag Time
Despite encouragement of early identification by health care professionals, significant lag time between parental concerns about their childs development and/or behavior and age at which the child receives a diagnosis of autism is consistently reported in


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literature (Wiggins, Baio, & Rice, 2006). Frith and Soares found that parental concern developed between 12 and 23 months of age, yet the children did not receive a professional diagnosis until 36 to 70 months of age (lag = 24 to 47 months; 1993). Howlin and Ashgarians study reported similar findings by noting initial parental concerns at an average of 18 months of age and a receipt of a professional autism diagnosis coming at an average age of 66 months (lag = 48 months; 1999). Sivberg more recently found a delay of 20 to 60 months between parental concerns and professional diagnosis (2003). Wiggins et al. found that children with autism are not diagnosed, on average, until 13 months after an initial evaluation by a qualified professional (2006).
In Japan, Fujiwara, Okuyama, and Funahashi (2011) found an average lag time between parental concerns and first visit to a hospital for diagnosis and treatment of ASD to be 2.9 years. This study also examined factors that influenced time lag for children. They found the following to be risk factors that may increase lag time: younger age at first parental concern, living with younger siblings, problems in interacting with others or not attending school, parents difficulties determining whom to consult, parents having visited the hospital via other institutions, longer commute times, and longer waiting times (Fujiwara et al., 2011). Fujiwara et al. also identified several protective factors for lag time: older age at first parental concern, living with father, and having developmental delays (2011). The gender of the child, socioeconomic status of the parents, and degree of impairment were not associated with lag time (Fujiwara et al., 2011). A subsequent study found a similar two-year difference between the earliest signs of ASD and mean age of diagnosis, reporting contributing factors such as time-consuming evaluations, cost of care, lack of providers, and a lack of comfort of primary care providers to diagnose autism (Gordon-Lipkin, Foster, & Peacock, 2016).


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Collectively, research findings suggest that children with ASD are not receiving a professional diagnosis until 20 to 60 months after their parents initially report concerns. Put into perspective, these results suggest that it is possible for a 2-year-old child with ASD to not receive a diagnosis and subsequent intervention services until they are 4-7 years of age. Clearly, such a significant delay in the receipt of imperative early interventions is extremely costly and concerning due to subsequent need for therapy and support services and costs to society.
By linking ADOS-2 Comparison Scores to lag time, this study aims to identify those factors that may be related to time lag in children with autism. By understanding and identifying variables related to lag time in children with autism, future research can examine how identifying factors can be used to connect these children to needed resources and interventions at an earlier age. Specifically, this study will investigate the relationship between lag time and ADOS-2 Comparison Scores, family history of mental health, behaviors of concern, access to special education services, referral sources, and parental
education level.


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CHAPTER III METHOD
The Colorado Multiple Institutional Review Board (COMIRB) approved this study for exemption on September 23, 2016.
Participants
Study participants were identified through a record review at a small, private clinic in a large city in the western United States. Records for child clients evaluated from January 1, 2014 until June 1, 2016 were reviewed. Inclusion criteria included: meeting the diagnostic criteria for ASD as defined by the DSM-IV or DSM-V, depending upon the date of the evaluation; completed ADOS-2 Module 1, 2, or 3 manuals; and completed intake information. Children with neurological disorders that present at birth, such as Cerebral Palsy, as well as ASD were not considered for the present study as parents reported concerns might be related to Cerebral Palsy and not ASD. Additionally, adopted children and stepchildren were excluded from the study due to the potential delay in noted concerns. Participants with a preexisting diagnosis of ASD were considered for this study as long as the original evaluation date was presented, original ADOS-2 scores were reported, and first concerns were noted in the original intake packet. Diagnoses of Asperger Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), general ASD in the DSM-IV, or ASD in the DSM-V were included in the present analysis.
Measures
Symptoms of Autism. The Autism Diagnostic Observation Schedule Second Edition (ADOS-2; Lord et al., 2012) is a semi-structured measure that clinicians use to assess a childs ability to play and communicate through naturalistic observation with the use of defined sets and activities and assessment criteria (Kroncke et al., 2016). In 2007, the ADOS


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algorithms were revised using a sample of 1,139 participants aged 14 months to 16 years, creating the ADOS-2 (Lord et al., 2012). For this research project, ADOS-2 protocols were reviewed to record Comparison Scores. ADOS-2 Modules 1, 2, and 3 were included in this research as these modules provided a 1-10 ASD Comparison Score. Comparison Scores are less influenced by verbal language level, thus representing a severity metric as independent as possible from intellectual ability, language, and age (Esler et al., 2015). Comparison Scores collected ranged from 3-10, as scores of 1 or 2 on the ADOS-2 do not meet criteria for a diagnosis of ASD when taken into consideration with other data collected during the evaluation. ADOS-2 Toddler Module and Module 4 were excluded as they do not offer the Comparison Score statistic.
Demographics. Upon intake at the clinic, parents completed a Client Registration Form Child/Minor and Client Questionnaire (CRF; see Appendix A & B; Kroncke et al., 2016). This form provided the following data: date of birth, age, gender, diagnoses and other conditions, ethnicity of client, languages spoken at home, mothers highest level of education attained, fathers highest level of education attained, and with whom the child currently lives. Additionally, via this form, parents reported initial age at which first concerns were observed, referral agency or individual, family history (e.g., psychological/emotional problems, autism, speech concerns), behavioral issues (e.g., aggression, cruelty to animals, mood swings), and prior special education services.
Procedure
The process of participant identification began with a review of evaluations. If the evaluation resulted in a diagnosis of ASD, the record was pulled and the CRF was reviewed. De-identified data were recorded into a password-protected server.


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During the data collection process, files were pulled in alphabetical order and were first reviewed to see if a psychological evaluation report was present. If present, the next step was to determine if the record qualified for inclusion. If a record did indeed meet inclusion criteria, the record was reviewed and data were recorded.
Predictor variables that were categorical or ordinal in nature (i.e., 0 times, 1 time, 2 or 3 times, 4 or 5 times, 6 or more times) were either dichotomized using dummy variables of 1 for 0 times or 2 for 1 or more times or combined into three groups with dummy variables (e.g., 1 for low, 2 for moderate, 3 for high). For example, a binary categorical variable was created in which any family history of psychological or emotional difficulties, ASD, or speech difficulties was combined. A response of yes to any family history was coded as a 1 and no family history was coded as 2, creating the variable Family History Total. Behaviors of concern were similarly combined. However, subjects were split into three groups based upon the total behaviors of concern reported. These groups were Low Behaviors (0-5 behaviors), Moderate Behaviors (6-10 behaviors), and High Behaviors (11-15 behaviors). Parental education was coded similarly to behaviors of concern by using three groups, high school level (low), college level (moderate), and graduate level (high).
Referral sources were coded dichotomously, but were too numerous to include all in the regression analysis. Therefore, the three most common referral sources were chosen first (Doctor, School, and Insurance referrals). A fourth referral source (Self-referrals) was selected by the researcher, as subjects self-referred for evaluations leading to a diagnosis of ASD were considered most likely to have different lag time data.
Demographics
Of all children diagnosed with ASD in the required date range, 120 cases (n = 120) between the ages of 2 and 14 years of age were considered for the present analysis. The


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participants in this study were 85% male (n = 102). The majority (80.7%; n = 96) of subjects identified as Caucasian, while 11.7% of subjects identified as Other or Multiple ethnicities (n = 14). Five percent of subjects identified as Hispanic ethnicity (n = 6), 1.7% identified as African-American ethnicity (n = 2), and 0.8% identified as Asian-Pacific (n = 1). Prior access to special education services was reported by 54.17% of subjects (n = 65).
Data were also collected relating to parental education level, indicating that 13.56% of mothers completed some portion of high school, 58.47% of mothers completed some portion of college, and 27.97% of mothers completed some portion of graduate school. Additionally, 17.09% of subjects fathers completed some portion of high school, 49.49% of fathers completed some portion of college, and 29.06% of fathers completed some portion of graduate school.
Family history of psychological or emotional difficulties was reported by 55% of participating parents (n = 66), while family history of ASD was reported by 19.17% (n = 23). Family history of speech struggles was reported in 15.83% of cases (n = 19). Family History Total was found to contain 70.34% of subjects (n = 83).
Of the qualifying behavioral data (n = 116), it was found that 32.76% of subjects had 0-5 behaviors of concern (n = 38), 56.9% of subjects had 6-10 behaviors of concern (n = 66), and 10.34% of subjects had 11-15 behaviors of concern (n = 12).
The most common referral sources for subjects included in this evaluation are: Childrens Hospital (17.5%; n = 21), Doctor/Pediatrician (16.7%; n = 20), School (14.2%; n = 17), and Psychologist/Psychiatrist (13.3%; n = 16). Other referral sources include: Other Therapists (10.0%; n = 12), Other (9.2%; n = 11), Insurance Companies (7.5%; n = 9), and Self-referrals (5.8%; n = 7). Demographics are presented in Table I.


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Data Analyses
Descriptive statistics were conducted to investigate Research Question 1: What is the length of time between parents initial concerns and the diagnosis of Autism Spectrum Disorder? Lag time was calculated by subtracting the age at which the parent first reported concerns from the childs age at the time of their first psychological evaluation and then calculating the average for the subjects of this study.
Regression analyses were conducted to investigate Research Questions 2 and 3: What is the relationship between symptom severities as measured by the Autism Diagnostic Observation Schedule Second Edition (ADOS-2) Comparison Scores and length of time between initial concerns and diagnosis? and What factors are related to the amount of time between initial concerns and diagnosis?
Specific pairwise comparisons were then conducted based upon significant factors found in the regression analyses to further clarify relationships.


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Table I: Demographics
Variable N Minimum Maximum Mean Std. Dev.
Report Age 120 2.583 14.833 7.811 3.179
First Concern 119 0.00 13.75 3.831 2.654
Lag Time 120 0.083 14.333 3.988 2.858
ADOS-2 Score 120 3 10 7.36 1.629
Demographics Percentage
Sex (Male=l) 85.0
African-American 1.7
Asian-Pacific .8
Caucasian 80.7
Flispanic 5.0
Other 11.8
English Spoken at Home 98.3
Spanish Spoken at Home .9
Arabic Spoken at Home .9
Access to Special Education Services 54.17
Family Flistory of Psychological/Emotional Difficulties 55.0
Family Flistory of Autism 19.17
Family Flistory of Speech Difficulties 15.83
Family History Total (n = 118) 70.34
Immunizations 90.83
Aggressive Behaviors 64.17
Bedwetting Behaviors 38.33
Cruel Behaviors 8.33
Destructive Behaviors 36.67
Disobedient Behaviors 60.83
Distractible Behaviors 79.17
Eating Behaviors 45.0
Flair Pulling Behaviors 13.33
Masturbation Behaviors 8.33
Mood Swing Behaviors 54.17
Poor Concentration Behaviors 60.83
Self Injurious Behaviors 30.83
Poor Sleeping Behaviors 46.67
Temper Behaviors 70.0
Fear/Worry Behaviors 41.67
Total Behaviors (0-5) 32.76
Total Behaviors (6-10) 56.90
Total Behaviors (11-15) 10.34
Referrals
School 14.2
Doctor/Pediatrician 16.7
Insurance Company 7.5
Childrens Flospital 17.5
Psychologist/Psychiatrist 13.3
Other Therapist (e.g. BCBA, OT. SLP) 10.0
Programs/Clinics (e.g. DU, Aspire) 3.3
Self-referred 5.8
Other (e.g. friend of practice) 9.2
Missing Data 2.5
Education Mother (n = 118) Father (n = 117)
10th Grade - .9
11th Grade - -
12th Grade 13.6 16.2
High School Total 13.56 17.09
1 yr. College 6.8 4.3
2 yr. College 10.2 11.1
3 yr. College 3.4 3.4
4 yr. College 38.1 35.0
College Total 58.47 49.49
Graduate School Total 27.97 29.06


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CHAPTER IV RESULTS
Lag Time Between Initial Concerns and Diagnosis of ASD
Lag time was found to range from 1 month to 14 years, 4 months. The average lag time found in the data set was almost 4 years (3.988 years, SD = 1.63); meaning subjects on average received a diagnosis of ASD nearly 4 years after the parents reported initial concerns.
Relationship Between (ADOS-2) Comparison Scores and Lag Time
A multiple regression analysis was conducted to answer the second research question: Do ADOS-2 Comparison Scores predict the length of time between initial concerns and diagnosis. When analyzing data for lag time, it was found that the data were positively skewed. Calculating the natural log of lag time accounted for the positive skew, creating a new variable. This new variable was then used in both regression analyses. Model 1 contains the ADOS-2 Comparison Score variable (ADOS). Model 2 includes the squared version of ADOS to determine if the relationship between ADOS and Lag Time was curvilinear. Assumptions of regression were checked and met. However, there were no significant results found in this regression analysis.
Relationship Between Various Demographic Variables and Lag Time
A second multiple regression analysis was performed to determine significance of the effect of demographic variables on lag time. The second regression analysis (Table II) included the following variables: access to special education services, total behavior, family history, maternal and paternal highest education completed, and various referral sources. Model 1 of the regression was comprised of access to special education services, Model 2 includes total behaviors, Model 3 includes family history, Model 4 adds education level,


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while Model 5 includes referral sources. Assumptions of regression were checked and met. All five models of the second multiple regression were found to be significant at the p < .05 level. In all nested models, access to special education was the only variable found to have a significant relationship with lag time even when all predictor variables were controlled for (ft = 352,p < .01).
After identifying access to special education as a significant predictor of lag time, a pairwise t-test was conducted to further analyze this relationship. The test confirmed that access to special education and lag time are significantly positively correlated (N = 119, r = 285, p < .01), meaning that subjects of this study who had received special education services saw an increase in lag time compared to the overall subject population of this study.


Table II: Summaryr of Regression Analyses for Variables Predicting Lag Time (N = 107)
Model 1 Model 2 Model 3 Model 4 Model 5
B SEB B B SEB P B SEB P B SEB P B SEB P
(Constant)' 1.226*** .083 1321*** .114 1.342*** .146 1.409*** .162 1.468*** .167
SpEd Services 373** .113 .305 .367** .113 .300 .360** .118 .295 .353** .119 .290 .352** .119 289
Total Behaviors (6-10) -.162 .122 -.132 -.156 .125 -.127 -.164 .127 -.133 -.128 .127 -.104
Total Behaviors (11-15) .011 .210 .005 .026 220 .012 .026 .223 .012 .040 .221 .019
Family History -.030 .133 -.022 -.044 .133 -.033 -.071 .132 -.053
Mother HS Educ -.105 .1S9 -.060 -.076 .188 -.043
Mother Grad Educ .117 .131 .086 .143 .131 .105
Father HS Educ .037 .176 .021 .001 .176 .000
Father Grad Educ -.246 .129 -.185 -.204 .129 -.154
School Referral -.241 .178 -.133
Doctor Referral -.284 .158 -.174
Insurance Referral .157 .208 .072
Self-Referral -250 .249 -.094
Rr .093 111 .112 .154 .206
F 10.896** 4.333* 3232* 2255* 2.055*
p<.05*, p<.01**, p<.001*** Natural Log of Lag Time A


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CHAPTER V DISCUSSION
The purpose of the current study was to identify lag time between parents first concerns and initial diagnosis of ASD, as well as to identify factors that may influence lag time. The children in this study received a diagnosis of ASD on average nearly four years after their parents first became concerned. The average lag time found in this study is consistent with that found in previous research where lag time ranged from 24 months to 60 months (e.g., Frith & Soares, 1993; Howlin & Ashgarain, 1999; Sivberg, 2003; Fukijawara et al., 2011; Gordon-Lipkin et al., 2016). This is a significant amount of time in which evidence-based early intervention strategies could be working to improve language, behavior, and social interaction skills.
The results of the present study indicated that there is no significant relationship between ADOS-2 Comparison Scores and lag time. Although it was hypothesized that more significant symptomatology would result in parents seeking professional assistance sooner, the insignificant findings of this current study correlate with Fujiwara et al.s previous study in which degree of impairment was not associated with lag time (2011).
When analyzing the potential relationships between demographic factors and lag time, a significant, positive correlation was found between access to special education and lag time, regardless of the other variables controlled for. No other factors were found to significantly predict lag time. This was surprising given that previous research identified factors such as problems interacting with others and a lack of providers to increase lag time (Fujiwara et al., 2011; Gordon-Lipkin et al., 2016). However, given the nature of this record-review study, some of these factors could not be assessed in the present study. This study did


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find a significant positive correlation between access to special education and lag time, a factor that has not been considered in previous literature.
The results of the present study beg the question as to why children who receive special education services experience longer lag time in ASD diagnosis. Bitterman, Daley, Misra, Carlson, and Markowitz (2008) give insight into special education services of children with ASD, finding that parents of children with ASD took an average of 76.9 days to find services while parents of children with other disabilities took an average of 83.8 days. Bitterman et al. (2008) also found that parents of children with ASD reported increased effort to receive services when compared to parents of children with other disabilities. Children with ASD received significantly more services (5.4 different types of services) than children with other disabilities (3.5 different types of services; Bitterman et al., 2008), with speech and language therapy being the most common service received by children with ASD in preschool, elementary, and secondary education (Wei, Wagner, Christiano, Shattuck, & Yu, 2014). Finally, Bitterman et al. found parental satisfaction related to the quality of services received to be 86.8% satisfaction for parents of children with ASD (compared with 90.1% satisfaction for parents of children with other disabilities) with the overwhelming majority of parents of children with ASD reporting being satisfied or very satisfied with the program, the teachers, and the services received (2008). The findings of Bitterman et al. and Wei et al. suggest that the correlation between lag time and access to special education found in this study can be explained in part by satisfactory services received in the school setting.
Furthermore, Charman, Howlin, Berry, and Prince (2004) found that children with ASD made more rapid developmental progress in elementary school than they had in preschool in the areas of communication, daily living skills, and socialization over an 11-month period. Specifically, the children gained 10 age-equivalent months in communication


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and 9 age-equivalent months in daily living skills and socialization (Charman et al., 2004). Charman et al. reported that autism symptom severity did not change over this time period (2004). Although this rate of development is still below the development of same-aged peers, it could account for some of the associated correlation between special education and lag time found in this study as increased development may cause parents to pause in pursuing medical diagnoses or services outside of the school setting.
Future studies should continue to focus on the impact of various factors on lag time.
In order to further assess the relationship between special education services and lag time, a qualitative study using surveys and parent interviews is suggested. Parent input is crucial in identifying whether the positive correlation between special education and lag time is due to positive factors such as appropriate developmental progress and parental satisfaction or negative factors such as difficulties determining whom to consult or a lack of providers (Charman et al., 2004; Bitterman et al., 2008; Fujiwara et al., 2011; Lipkin-Gordon et al., 2016).
Limitations
While the results from this study add to the literature, there are several limitations that should be noted. First and foremost, the small data set (n = 120) limited the scope of this research study in terms of including all factors in the regression analyses. Additionally, there is a noticeable lack of diversity in the data used for this study. With 80.7% (n = 96) of subjects identifying as Caucasian and 98.3% (n = 115) of subjects identifying as English-speaking, the generalizability of this study to other groups is limited. Similarly, socioeconomic status was not considered in the data used for this study, as it was not
collected.


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Another limitation relates to the data collection process itself. Since data were collected via a records review, no interview or follow-up data could be collected. Such data could supply important information about the psychological evaluation process and the various routes parents take to receive a diagnosis for their child. Furthermore, records reviewed for this study were evaluated from January 1, 2014 until June 1, 2016, as this was when the most recent and most comprehensive intake questionnaires were implemented. This caused a large amount of data to be discarded due to variable and inconsistent intake questionnaire data.
Finally, this study simply identified factors that may potentially be related to lag time. It does not answer any questions related to cause and effect and why such factors may or may not impact lag time.
Conclusion
The tremendous increase in ASD prevalence since the year 2000 continues to support the need for research of ASDs (Christensen et al., 2016; Kroncke et al., 2016). This need is further supported by research that finds the importance of early intervention in children with ASD. One such piece related to early intervention in children with ASD is time lag between first parental concern and first diagnosis of ASD. Therefore, the purpose of this current study was to identify lag time experienced by children with ASD as well as factors that may increase or decrease lag time.
Children who had accessed special education services experienced longer lag time between parents first concern and a diagnosis of ASD. Continuing research utilizing parent surveys and interviews is needed to further clarify this relationship. It should be noted that this relationship might change given the addition of school-identified autism to special education labels, further warranting continuing research. Factors influencing lag or wait time,


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is a relatively new topic in research surrounding ASD. Therefore, this study is simply a piece of the puzzle as researchers continue to examine lag time in children with ASD in hopes of connecting these children to evidence-based interventions at younger ages.


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Axelrod, S., McElrath, K., & Wine, B. (2012). Applied behavior analysis: Autism and beyond. Behavioral'Interventions, 27(1), 1-15. doi:10.1002/bin,1335
Bitterman, A., Daley, T. C., Misra, S., Carlson, E., & Markowitz, J. (2008). A national
sample of preschoolers with autism spectrum disorders: Special education services and parent satisfaction. Journal of Autism and Developmental Disorders, 25(8), 1509-1517. doi: 10.1007/sl0803-007-0531-9
Charman, T., Howlin, P., Berry, B., & Prince, E. (2004). Measuring developmental progress of children with autism spectrum disorder on school entry using parent report. Autism, 5(1), 89-100. doi: 10.1177/1362361304040641
Chiri, G., & Warfield, M. E. (2012;2011;). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 76(5), 1081-1091. doi:10.1007/sl0995-011-0833-6
Christensen, D. L., Baio, J., Van Naarden Braun, K., Bilder, D., Charles, J., Constantino, J. N., Yeargin-Allsopp, M. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years: Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 20X2. MMWR. Surveill Summaries, 65(3), 1-23. doi: 10.15585/mmwr.ss6503al
Corsello, C. M. (2005). Early intervention in autism. Infants & Young Children, 75(2), 74-85. doi: 10.1097/00001163-200504000-00002
Esler, A. N., Bal, V. H., Guthrie, W., Wetherby, A., Weismer, S. E., & Lord, C. (2015). The autism diagnostic observation schedule, toddler module: Standardized severity scores. Journal of Autism and Developmental Disorders, 45(9), 2704-2720. doi: 10.1007/sl0803-015-2432-7
Frith, U., & Soares, I. (1993). Research into earliest detectable signs of autism: What parents say. Communication, 27(3), 17-18.
Fujiwara, T., Okuyama, M., & Funahashi, K. (2011). Factors influencing time lag between first parental concern and first visit to child psychiatric services in children with autism spectrum disorders in japan. Research in Autism Spectrum Disorders, 5(1), 584-591. doi:10.1016/j.rasd.2010.07.002


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Gordon-Lipkin, E., Foster, J., & Peacock, G. (2016). Whittling down the wait time:
Exploring models to minimize the delay from initial concern to diagnosis and treatment of autism spectrum disorder. Pediatric Clinics of North America, 63(5), 851-9. doi: 10.1016/j.pcl.2016.06.007
Greenspan, S., & Wieder, S. (1997). Developmental patterns and outcomes in infants and
children with disorders in relating and communicating: A chart review of 200 cases of children with autism spectrum diagnoses. Journal of Developmental and Learning Disorders, 1(1), 87-141.
Harris, S. L., & Handleman, J. S. (2000). Age and IQ at intake as predictors of placement for young children with autism: A four- to six-year follow-up. Journal of Autism and Developmental Disorders, 30(2), 137-142.
Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and asperger syndrome: Findings from a survey of 770 families. Developmental Medicine and Child Neurology, 47(12), 834-839. doi: 10.1111/j. 1469-8749.1999.tb00550.x
Kroncke, A. P., Willard, M., & Huckabee, H. (2016). Assessment of autism spectrum disorder: Critical issues in clinical, forensic, and school settings. Switzerland:
Springer International Publishing. doi:10.1007/978-3-319-25504-0
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Rutter M, LeCouteur A, Lord C (2003, 2008). Autism Diagnostic Interview Revised Manual. Los Angeles: Western Psychological Services.


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Dziobek, I. (2013). Diagnosing autism in a clinical sample of adults with intellectual disabilities: How useful are the ADOS and the ADI-R? Research in Developmental Disabilities, 34(5), 1642-1655. doi: 10.1016/j ridd.2013.01.028
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Skinner, B. F. (1957). Verbal behavior. United States: Appleton-Century-Crofts.
Smith, T. (1999,2006). Outcome of early intervention for children with autism. Clinical Psychology: Science and Practice, 6( 1), 33-49. doi:10.1093/clipsy.6.1.33
Virues-Ortega, J. (2010). Applied behavior analytic intervention for autism in early
childhood: Meta-analysis, meta-regression and dose-response meta-analysis of multiple outcomes. Clinical Psychology Review, 50(4), 387-399. doi: 10.1016/j.cpr.2010.01.008
Wei, X., Wagner, M., Christiano, E. R. A., Shattuck, P., & Yu, J. W. (2014). Special education services received by students with autism spectrum disorders from preschool through high school. The Journal of Special Education, 48(3), 167-179. doi: 10.1177/0022466913483576
Wolff, S. (2004). The history of autism. European Child & Adolescent Psychiatry, 73(4), 201-208. doi:10.1007/s00787-004-0363-5
Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., Brock, M. E., Plavnick, J. B., Fleury, V. P., & Schultz, T. R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45(1), 1951-1966. doi:10.1007/sl0803-014-2351-z


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APPENDIX A
Client Registration Form Child/Minor
Date Completed:________________________________________
Client Legal Name (Last, First,
MI):______________________________________________________________________
Physical Street Address:
City:__________________________________ State:_________ Zip Code:_________
Mailing Address (if different):
Date of Birth:____________________________ Age:______________________ Sex:
Social Security Number:_____________________________________
School:_________________________________________________________ Grade:___
Diagnosis:
Other Conditions:
Ethnicity of Client (check all that apply):
African-American______ Asian-Pacific_______ Caucasian________ Hispanic________ Other
Language(s) spoken at home:
Religious/Spiritual/Cultural Beliefs:
Mother/Legal Guardian Name:
Mother/Legal Guardian Date of Birth:__________________________________
Relationship to client (please check one)'. Biological_Adoptive______Step_____Foster
Address:
Phone: Home______________________________Work______________________________
Cell____________________________
Email:
Occupation:__________________________________________________________________________
Highest Level of Education Attained (please circle):
High School: 9 10 11 12 College: 1 2 3 4 Graduate School


27
Employer Name:
Employer's Address:
Employer's Phone:__________________________________________________________________
Father/Legal Guardian Name:
Father/Legal Guardian Date of Birth:_______________________________
Relationship to client (please check one)'. Biological_Adoptive____Step______Foster
Address:
Phone: Home_____________________________Work_____________________________
Cell___________________________
Email:
Occupation:________________________________________________________________________
Highest Level of Education Attained (please circle):
High School: 9 10 11 12 College: 1 2 3 4 Graduate School
Employer Name:
Employer's Address:
Employer's Phone:__________________________________________________________________
Parent's Marital Status (check): Married_______Separated_______Divorced_______Single
W idowed_______
Child Lives with (check all that apply): Father____
Mother_______Other______Specify_________________________________
Client's Siblings:
Name Age Gender
Name Age Gender
Name Age Gender
Name Age Gender
Client's Primary Care Physician: Name:
Clinic/Company Practice Name:


28
Address:
Phone:_______________________________________________Fax:
Email:
Would you like Emerge to exchange clinical information with your child's PCP or other mental health/behavioral/medical provider? (please check one) Yes_____ No________N/A_______
***If yes, please complete the included Release of Information form for each provider***


29
Client Name:
APPENDIX B Client Questionnaire
Date:
PART 1 Concerns and Strengths
What specific concerns do you have about your child?
When did you first develop these concerns?
Whom have you seen previously about your concerns and what were you told about your child?
What are your child's interests and strengths? What does he/she like to do?


30
What questions would you like answered during the evaluation (if applicable)?
What agency or individual referred you to Emerge?
Name:___________________________________________________________________________
Address:________________________________________________________________________
Phone:__________________________________________________________________________
PART 2 Family History
Is there any history of the following on either side of the child's biologic parents' families? If yes, please indicate with and "X" on Father's or Mother's side or other blood relative (please indicate who).
Description Father Mother Other Blood Relative:
Psychological/Emotional Problems
Intellectual Disability
Learning Disabilities
Birth Defects
Seizures/Convulsions
Tuberculosis
Neurological Disease
Diabetes
Cancer
Allergies/Asthma
Gland Disorder/Thyroid
Hearing Impairments
Vision Impairments
Hyperactivity
Miscarriages
Slow Development
Autism
Fragile X
Speech Problems
Other:
Other:
Please explain any conditions present on either side of the family.
PART 3 Pregnancy and Birth History


31
Please list all pregnancies and miscarriages of child's biological mother (in chronological order).
Birth Date Birth Weight Health or Development





Please describe anything unusual or exceptional about the pregnancy and/or birth of the client.
The baby was born: Early____Late________On Time______Number of Weeks___________
The baby was born by: Normal Vertex (head down)______Breech_____C-section______
Baby's birth weight:________lbs ________oz Length:______________inches Apgar
Score:___________________________
Are biologic parents related to one another by blood: No____ Yes________: How:
Please check any of the following if present during pregnancy or birth.
Excessive Bleeding Fever Rash
Prescription Drugs Toxemia Poor Weight Gain
Illicit/Street Drugs Cigarettes Narcotics
Alcohol Supplemental Oxygen Illnesses
Please check any of the following if present during newborn period.
Jaundice Feeding Difficulties Suspicion of Infection
Poor Temperature Control Poor Activity Other
PART 4 Nutritional History
Breast Fed: Yes No For how long? months
Formula Fed: Yes No Name of Formula:
When were foods added:_______________
When weaned to a cup:________________
Weight at one year:______lbs ______oz


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Do you have concerns about your child's current eating habits/diet?
PART 5 Development History
Developmental Milestones: Write down the age when your child first did each of the following. Write "NA" if your child has not done it yet. Write DK if you dont know/remember.
Smiled Held Head Erect Separated Easily from Mother
Imitated Sounds Rolled Over Ate Unaided with Spoon
Said "Mama" or "Dada" Sat Alone Knew Colors
Said other single words Crawled Started Counting
Followed simple directions Walked Alone Recited Total Alphabet
Said 2 to 3 word phrases Rode Tricycle Read Words
In general, did you feel that your child developed: Quickly_Typically_Slowly______
Temperament: Please comment on the following behaviors for your child as an infant and as a toddler.
How active is your child?
How well does your child deal with transition and change?
How well does your child respond to new places, people and things?
What is your child's basic mood? Happy_________ Sad______ Angry_______ Quiet
Other______________________________
Is your child predictable in patterns of sleep, appetite, etc?


33
PART 6 Medical History
Please indicate if the following are relevant to your child currently or in the past. Check Yes or No. If yes, please explain. You may use the back of the form if you require additional writing space.
Description Yes No Explanation/Specify/Treating Doctors Name
Abdominal Pain/Bowel Issues
Allergies
Anemia
Birth Defects
Blood Disorders
Concussion/Head Injury
Dental Problems
Drooling
Ear Infections
Eating Issues/Gags/Chokes
Headaches
Hearing Loss
Heart Condition
Hormone Problems
Ingestion of Poisons
Joint or Bone Problems
Lung/Breathing Problems
Seizures or Convulsions
Significant Accidents
Skin Disease
Tics or Repetitive Behavior
Urinary Problems/Infections
Other Medical Concerns
Child's Current Weight:________lbs_______oz Child's Current Height:________ft_______in
Are your child's immunizations up to date? Yes_______No_________
List any hospitalizations and operations of the client. Please include approximate dates:
List all medications that your child is currently taking.


34
Medication Name Dosage Frequency Prescribing Doctor Name






Please indicate if the following actions are relevant to your child currently or in the past. Please check Yes or No and if yes, please explain/specify. You may use the back of the form if you require additional writing space.
Description Yes No Explanation/Specify
Aggression
Bedwetting
Breath Holding
Cruelty of Animals
Destructiveness
Difficulty Toilet Training
Disobedience
Distractibility
Eating Problems
Hair Pulling
Masturbation
Mood Swings
Nail Biting
Poor Concentration
Self-injurious Behavior (i.e.: head banging)
Sleep Problems
Temper Tantrums
Thumb Sucking
Unusual Fear
Any other behavior issues that you would like to mention or explain?


35
Does your child do any of the following? Please check Yes or No and explain if necessary.
Description Yes No Explanation
Get along with other children
Become easily upset or frustrated
Become angry or destructive easily
Become overactive
Prefer to be alone
Misbehave frequently
Have difficulty sitting still
Have any problem with awkwardness or clumsiness
Listen well
F ollow spoken directions
Please list all of your child's current and previous mental/behavioral health providers. Please also include any past developmental evaluations or testing your child has had.
Provider Name Service Provided Approximate Dates Outcome and/or








How do you discipline your child? Please give an example.


36
PART 7 Educational Profile
Please indicate the schools your child has attended in chronological order from current to oldest.
School Name Grade/Level Dates Attended






Has your child ever received special education services? Please explain.
Describe any current school programs.
Does your child or family utilize any other community resources (support groups, social services, etc)? Please list.


37
Please tell us what you consider to be important goals for your child in the following areas:
Communication:
Social Skills and Relationship Development:
Sensory Integration and Motor Skills Development:
Structured Learning, Pre-Academics and Academic Skills:
Is your child or family currently involved in any legal issues? If yes, please explain.


38
As a family, we'd like to be able to...
Places in the community that we enjoy are...
Emerge, P.C. can help our family by_
If you feel that there is additional information you would like to provide that would help us to know you or your child better, please include that information below.


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! UNDERSTANDING LAG TIME IN CHILDREN WITH AUTISM SPECTRUM DISO R DERS by JEREMY MICHAEL WILSON B.A. University of Colorado Boulder, 2012 A thesis submitted to the Faculty of the Graduate School of the University of Colorado in partial fulf illment of the requirements for the degree of Doctor of Psychology School Psychology Program 2017

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! ii 2017 JEREMY MICHAEL WILSON ALL RIGHTS RESERVED

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! iii This thesis for the Doctor of Psychology degree by Jeremy M ichael Wilson has been approved for the School Psychology Program b y M. Franci Crepeau Hobson, Chair Bryn Harris Colette B. Hohnbaum Date: May 13, 2017

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! iv Wilson, Jeremy Michael ( PsyD, School Psychology Program) Understanding Lag Time in Children with Au tism Spectrum Disorders Thesis directed by Professor M. Franci Crepeau Hobson ABSTRACT Early identification of children with Autism Spectrum Disorders (ASD) can lead to earlier access to evidence based intervention programs and services. The purpose of t he current study was to identify lag time experienced by children with ASD as well as factors that may increase or decrease lag time. Factors of interest included Autism Diagnostic Observation Schedule Second E dition ( ADOS 2) Comparison Scores, family hi story of mental health, behaviors of concern, access to special education services, referral sources, and parental education level. One hundred twenty children with ASD ages 2 to 14 were identified at a small private clinic in a large city in the western United States and data were collected via a retrospective review of records. Results indicated that children with ASD identified for this study did not receive a diagnosis until 3.988 years after parents initially reported concerns. A significant positive correlation was found between access to special education and lag time. Implications for lag time and early identification of ASD are discussed. The form and content of this abstract are approved. I recommend its publication. Approved: M. Franci Crepeau H obson

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! v TABLE OF CONTENTS CHAPTER I. INTRODUCTION 1 II. LITERATURE REVIEW 3 III. METHOD 9 IV. RESULTS 15 V. DISCUSSION 18 REFERENCES 23 APPENDIX 26

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! 1 CHAPTER I INTRODUCTION Problem and Significance Autism Spectrum D isorder (ASD) was discovered in 1943 by Kanner, defining th e symptoms as "extreme autistic aloneness', abnormal speech with echolalia, pronominal reversal, literalness, and inability to use language for communication; and monotonous, repetitive behaviors with an anxiously obsessive desire for the maintenance of sameness'" ( Wolff, 2004, p. 203 ). Factors influencing ASD have been hypothesized since its discovery, with attemp ts to link ASD to numerous childhood disorders and experiences such as childhood schizophrenia, highly intelligent parents, refrigerator paren ts and children with brai n damage and intellectual disabilities (Wolff, 2004) Asperger joined the discussion in 1944, describing four children whom he believed to have autistic psychopathy of childhood (Wolff, 2004) These children often had cognitive gi fts in mathematics or sciences, but struggled with social and emotional functioning. Specifically, they lacked social reciprocity, had stereotypic behaviors, and exhibited restricted interests. Asperger noted that the condition could be recognized in early childhood and continued throughout the child's lifetime (Wolff, 2004) Kanner's and Asperger's early definitions and noted symptoms of ASD have not changed much over time, as ASD is now defined as a neurodevelopmental disorder that affect s the domains of social interaction, communication, and repe titive or stereotypic behavior ( Newschaffer et al., 2007 ). It is also accepted that these symptoms begin to present before 3 years of age (Smith, 1999). These three social domain s are found in the Diagnostic and S tatistical Manual of Mental Disorders Fifth Edition (DSM V) diag nosis criteria for ASD which will be discussed in detail in the Literature Review below (American Psychological Association, 2013)

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! 2 The Center s for Disease Control reports the prevalence of ASD to be 14.6 per 1,000 children, which equates to about 1 in 68 children presenting with ASD for the surveillance year of 2012 ( Christensen et al., 2016 ). Although the prevalence for 2012 is very similar t o the prevalence equated in 2010 (14.7 per 1,000 1 in 68), ASD prevalence has increased greatly since the year 2000 when ASD had a prevalence of 6.7 per 1,000 children ( about 1 in 150 children ) The undeniable increase in prevalence reinforces the need for research focusing on ASD and the need for ear ly intervention for children with the disorder Therefore, this research paper examines the lag t ime between parents' first concerns and their child's first ASD diagnosis with the following research questions: 1. What is the length of t ime between parent s in itial concerns and the diagnosis of Autism Spectrum Disorder? 2. What is the relationship between symptom severities as measured by the Autism Diagnostic Observation Schedule Second E dition ( ADOS 2 ) Comparison Scores and length of time between initial conce rns and diagnosis? 3. What factors are related to the amount of t ime between initial concerns and diagnosis? This study aims to clarify the relationship betw een ADOS 2 Comparison Scores and time lag to diagnosis with the hypothesis that more sever e symptomolo gy will be related to less time lag between parents' initial concerns and a diagnosis of ASD In addition this paper aims to identify additional factors that are related to the amount of time between parents' initial concerns and ASD diagnosis In this wa y resources, systems, and/ or areas of communication that may foster shorter time frames might be identified so that children with ASD can receive much needed early intervention.

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! 3 C HAPTER II LITERATURE REVIEW Autism Spectrum Disorder I ndividuals with Autism Spectrum Disorder ( ASD ) struggle with social communication, comprehension and pragmatic language, repetitive behaviors, adaptive behaviors, and social reciprocity (Kro n cke, Willard, & Huckabee, 2016). The Diagnostic and Statistical Manual of Mental Disord ers Fifth Edition 's (DSM V ; American Psychological Association [APA], 2013 ) diagnostic criteria for ASD include a number of social deficits. Specifically, the person must exhibit "persistent deficits in social communication and social interaction across mu ltiple contexts, as manifested by the following": (1) "Deficits in social emotional reciprocity", (2) "Deficits in nonverbal communicative behaviors used for social interaction", and (3) "Deficits in developing, maintaining, and understanding relationships (APA, 2013, p. 50). These three deficits make up the social communication impairment part of the diagnosis and can be specified using a severity rating of Level 1, 2, or 3. Level 1 represents "Requiring support", Level 2 represents "Requiring substantial support", and Level 3 represents "Requiring very substantial support". The second set of diagnostic criteria for ASD found in the DSM V includes "restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following": (1) "Stereotyped or repetitive motor movements, use of objects or speech (2) "Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior", (3) "Highly restricted, fixated interests that a re abnormal in intensity or focus", and (4) "Hyper or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment" (APA, 2013, p. 50). Restricted, repetitive patterns of

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! 4 behavior can also be qualified using the same severity level rating as social communication impairment (Level 1, 2, or 3). Prevalence of Autis m Spectrum Disorder Autism is now the faste st growing developmental disorder, with an increase of 23% from 2006 to 2008 and an increase of 78% from 2002 to 2008 (Kro ncke et al., 2016). The DSM V recently combined Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD NOS), and Autism into one Autism Spectrum Diso rder in 2013. This change may cause a slight increase in prevalence moving forwar d due to the inclusion of children who would have been diagnosed with Asperger Syndrome or PDD NOS in ASD statistics. Regardless, statistics of ASD prevalence prior to 2013 are alarming. Identification of Autism Spectrum Disorder Knowing that ASD affects social communication and behavior, assessment and identification of ASD relies on open ended social interactions and observations. Although assessment of ASD can look much different than assessment of cognitive skills, diagnosis is still based in standardi zed assessments such as the Autism D iagnostic Observation Schedule S econd Edition (ADOS 2 ; Lord et al., 2012 ) or Autism Diagnostic Interview Revised (ADI R ; Rutter, LeCouteur & Lord, 2003, 2008 ). Research surrounding the ADOS 2 is quite strong as Sap pok et al. (2013) found the ADOS 2 to be a very sensitive measure with 100% sensitivity for ASD and 85% sensitivity for autism. Early Intervention Each individual diagnosed with autism generates approximately $3.2 million in costs to society over the co urse of his or her lifetime, according to a report from the Archives of Pediatrics & Adolescent Medicine ( Autism Costs ", 2007). Thus, it is critical that individuals with ASD be identified and supported as early as possible. S tudies have emphasiz ed the

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! 5 im portance of early intervention for children with ASD since the 1980s ( Newschaffer et al., 2007 ). R esearch studie s have repeatedly found that children with autism make major gains with early intervention (Smith, 1999). Corsello (2005) compared many pro gram s such as the TEACCH Home Program (Ozonoff & Cathcart, 199 8), Discrete Trial (Lovaas, 198 7), Applied Behavior Analysis (Harris & Handleman, 2000), The Greenspan Model (Greenspan & Wieder, 1997), and The Denve r Model (Rogers & Lewis, 1989) and conclude d tha t children with ASD make greater gains in positive affect, pragmatic communication, and interpersonal interactions when they begin intervention programs at younger ages ideally before the age of 4 5 years B ased on research results Rogers (1996) conclu ded that children with ASD benefit most from interventions that begin between ages 2 and 4 as they end up making far more progress than older children who receive the same interventions Rogers also note d that children with ASD are able to make more rapid gains than young children with neurodevelopmental disorders suggesting that there is a critical period for intervention with ch ildren with autism between the a ges 2 4 (1996) Wong et al. (2005) recently completed a comprehensive evidence based practice r eview that identified twenty seven practices as meeting their criteria for being evidence based in the intervention of individuals with autism ages 0 22. The majority of research was conducted with children with autism ages 6 11, with preschool age (3 5) a lso having a large amount of research to draw from. These evidence based practices primarily focused on communication, social interaction, challenging behaviors, play, school readiness skills, pre academic/academic skills and adaptive self help skills, sh owing that early intervention in children with ASD has a wide variety of evidence based curriculum and interventions. Given

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! 6 the evidence based effectiveness of early intervention found in multiple studies, it is clear that early intervention for children w ith autism is crucial. With an increased understanding of lag time between initial parental concern and a diagnosis of ASD, children with autism are more likely to receive evidence based interventions at a younger age. Applied Behavior Analysis and Behavi or Modification B.F. Skinner is credited with the creation of behavior modification and defines it in his 1974 book, About Behaviorism, as the philosophy of the science of human behavior (1974). Skinner discovered the principles of behavior in research in volving pig eons and rats, believing that these principles were applicable to all species, including human beings (1953). Skinner then transitioned to verbal behavior, focusing on echoics, mands, tacts, and intraverbals; or reinforced bids for conversation (1957). Skinner's work provided the foundation for the developme nt of Applied Behavior Analysis (ABA) Baer, Wolf, and Risley (1968 ) defined ABA as the direct application of the principles of behaviorism to the improvement of human behavior. Although ABA b egan with the aim of improving all human beings and human behaviors a 2012 review of existing literature concludes that ABA has significantly narrowed its focus to persons with developmental disabilities such as individuals with autism, fetal alcohol syn drome, and Down syndrome (Axelrod McElrath, & Wine, 2012) Early intervention in the form of ABA as early as 22 months of age can help to improve intellectual functioning, language development, and adaptive behavior of children with ASD ( ViruÂŽs Ortega 20 10). Lag Time D espite encouragement of early identification by health care professionals, significant lag time between parental concerns about their child's development and/or behavior and age at which the child receives a diagnosis of autism is consiste ntly reported in

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! 7 literature ( Wiggins, Baio, & Rice, 2006 ). Frith and Soares found that parental concern developed between 12 and 23 months of age yet the children did not receive a professional diagnosis until 36 to 70 months of age ( lag = 24 to 47 months ; 1993). Howlin and Ashgarian 's study reported similar findings by noting initial parental concern s at an average of 18 months of age and a receipt of a professional autism diagnosis coming at an average age of 66 months ( lag = 48 months ; 1999). Sivberg mo re recently found a delay of 20 to 60 months between parental concerns and professional diagnosis (2003). Wiggins et al. found that children with autism are not diagnosed, on average, until 13 months after an initial evaluation by a qualified professional (2006). In Japan, Fujiwara Okuyama, and Funahashi (2011) found an average lag time between parental concerns and first visit to a hospital for diagnosis and treat ment of ASD to be 2.9 years. This study also examined factors that influence d time lag for c hildren. They found the following to be ris k factors that may increase lag time : younger age at first parental concern, living with younger siblings, problems in interacting with others or not attending school, parent s difficulties determining whom to con sult, parents having visited the hospital via other institutions, longer commute times, and longer waiting times (Fujiwara et al., 2011) Fujiwara et al. also identified sev eral protective factors for lag time : older age at first parental concern, living w ith father, and having developmental delays (2011) The gender of the child, socioeconomic status of the parents, and degree of impairment were not associated with lag time (Fuj iwara et al. 2011) A subsequent study found a similar two year difference bet ween the earliest signs of ASD and mean age of diagnosis, reporting contributing factors such as time consuming evaluations, cost of care, lack of providers, and a lack of comfort of primary care providers to diagnose autism (Gordon Lipkin, Foster, & Peaco ck, 2016).

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! 8 Collectively, research findings suggest that children with ASD are not receiving a professional diagnosis until 20 to 60 months after their parents initially report concerns Put into perspective, these results suggest that it is possible for a 2 year old child with ASD to not receive a diagnosis and subsequent intervention services until they are 4 7 years of age Clearly, such a significant delay in the receipt of imperative early interventions is extremely costly and concerning due to subsequ ent need for therapy and support services and costs to society. By linking ADOS 2 Comparison Scores to lag time this study aims to identify those factors that may be related to time lag in children with autism By understanding and identifying variables related to lag time in children with autism, future research can examine how identifying factors can be used to connect these children to needed resources and interventions at an earlier age. Specifically, t his study will investigate the relationship betwe en lag time and ADOS 2 Comparison Scores, family history of mental health, behaviors of concern, access to special education services, referral source s and parental education level.

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! 9 CHAPTER III METHOD The Colorado Multiple Institutional Review Board (C OMI RB) approved this study for e xemption on September 23, 2016. Participants Study participants were identified through a re cord review at a small private c linic in a large city in the western United States Records for child clients evaluat ed from Janu ary 1 2014 until June 1, 2016 were reviewed. Inclusion criteria included : meet ing the diagnostic criteria for ASD as defined by the DSM IV or DSM V depending upon the date of the evaluation ; completed ADOS 2 Module 1, 2, or 3 manuals; and completed intak e information Children with neurological disorders that present at birth, such as Cerebral Palsy as well as ASD were not considered for th e present study as parents' reported concerns might be related to Cerebral Palsy and not ASD. Additionally, adopted children and stepchildren were excluded from the study due to the potential delay in noted concerns. P articipants with a preexisting diagnosis of ASD were considered for this study as long as the original evaluation date was presented, original ADOS 2 scor es were reported, and first concerns were noted in the original intake packet. Diagnos es of Asperger D isorder, P ervasive D evelopmental D isorder N ot O therwise S pecified (PDD NOS), general ASD in the DSM IV, or ASD in the DSM V were included in th e present analysis. Measures Symptoms of Autism. The Autism Diagnostic Observation Schedule Second Edition (ADOS 2 ; Lord et al., 2012 ) is a semi structured measure that clinicians use to assess a child's ability to play and communicate through naturalistic obser vation with the use of defined sets and activities and assessment criteria ( Kronc ke et al., 2016 ). In 2007, t he ADOS

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! 10 algorithms were revised using a sample of 1,139 participa nts aged 14 months to 16 years creating the ADOS 2 (Lord et al., 2012). For this research project, ADOS 2 protocols were reviewed to record Comparison Scores ADOS 2 Modules 1, 2 and 3 were included in this research as these modules provided a 1 10 ASD Compariso n Score. Comparison Scores are less influenced by verbal language level, t hus representing a severity metric as independent as possible from intellectual ability, language, and age ( Esler et al., 2015 ). Comparison Scores collected ranged from 3 10, as scores of 1 or 2 on the ADOS 2 do not meet criteria for a diagnosis of ASD whe n taken into consideration with other data collected during the evaluation. ADOS 2 Toddler Module and Module 4 were excluded as they do not offer the Comparison Score statistic Demographics. Upon intake at the clinic, parents completed a Client Registrat ion Form Child/Minor and Client Questionnaire ( CRF; see Appendix A & B ; Kroncke et al., 2016 ) This form provided the following data: date of birth, age, gender, diagnoses and other conditions, ethnicity of client, languages spoken at home, mother's highest level of education attained, father's highest level of education attained, and with whom the child currently lives Additionally, via this form, parents reported initial age at which first concerns were observed referral agency or individual, family histo ry (e.g. psychological/emotional problems, autism speech concerns ), behavioral issues (e.g. aggression, cruelty to animals, mood swings), and prior special education services. Procedure The process of participant identification began with a review of e valuations. If the evaluation resulted in a diagnosis of ASD, the record was pulled and the CRF w as reviewed. D e identified d ata were recorded i nto a password protected server.

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! 11 During the data collection process, files were pulled in alphabetical order an d were first reviewed to see if a psychological evaluation report was present. If present, the next step was to determine if the record qualified for inclusion. If a record did indeed meet inclusion criteria, the record was reviewed and data were recorded. Predictor variables that were categorical or ordinal in nature (i.e., 0 times, 1 time, 2 or 3 times, 4 or 5 times, 6 or more times) were either dichotomized using dummy vari ables of 1 for 0 times or 2 for 1 or more times or combined into three groups wi th dummy variables (e.g., 1 for low, 2 for moderate, 3 for high). For example, a binary categorical variable was created in which any family history of psychological or emotional difficulties, ASD, or speech difficulties was combined. A response of yes to any family history was coded as a 1 and no family history was coded as 2 creating the variable Family History Total Behaviors of concern were similarly combined. However, subjects were split into three groups based upon the total behaviors of concern rep orted. These groups were Low Behaviors (0 5 behaviors), Moderate Behaviors (6 10 behaviors), and High Behaviors (11 15 behaviors). Parental education was coded similarly to behaviors of concern by using three groups, high school level (low), college level (moderate), and graduate level (high). R eferral sources were coded dichotomously, but were too numerous to include all in the regression analysis. Therefore, the three most common referral sources were chosen first (Doctor, School, and Insurance referrals ). A fourth referral source (Self referrals) was selected by the researcher, as subjects self referred for evaluations leading to a diagnosis of ASD were considered most likely to have different lag time data. Demographics Of all children diagnosed with A SD in the required date range 120 cases (n = 120) between the ages of 2 and 14 years of age were considered for the present analysis. The

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! 12 participants in this study were 85% male (n = 102). The majority (80.7% ; n = 96 ) of subjects identified as Caucasian, while 11.7% of subjects identified as Other or Multiple ethnicities (n = 14) Five percent of subjects identified as Hispanic ethnicity (n = 6) 1.7% identified as African American ethnicity (n = 2) and 0.8% identified as Asian Pacific (n = 1) Prior acc ess to special education services was reported by 54.17% of subjects (n = 65). Data were also collected relati ng to parental education level, indicat ing that 13.56% of mothers completed some portion of high school, 58.47% of mothers completed some portion of college, and 27.97% of mothers completed so me portion of graduate school. Additionally, 17.09% of subjects' fathers completed some portion of high school, 49.49% of fathers completed some portion of college, and 29.06% of fathers completed some portion of graduate school. Family history of psychological or emotional difficulties was reported by 55% of participating parents (n = 66), while family history of ASD was reported by 19.17% (n = 23). Family history of speech struggles was reported in 15.83% of cases (n = 19). Family History Total was found to contain 70.34% of subjects (n = 83). Of the qualifying behavioral data (n = 116), it was found that 32.76% of subjects had 0 5 behaviors of concern (n = 38), 56.9% of subjects had 6 10 behaviors of concer n (n = 66), and 10.34% of subjects had 11 15 behaviors of concern (n = 12). The most common referral sources for subjects included in this evaluation are: Children's Hospital (17.5%; n = 21), Doctor/Pediatrician (16.7%; n = 20), School (14.2%; n = 17), a nd Psychologist/Psychiatrist (13.3%; n = 16). Other referral sources include: Other Therapists (10.0%; n = 12), Other (9.2%; n = 11), Insurance Companies (7.5%; n = 9), and Self referrals (5.8%; n = 7). Demog raphics are presented in Table I

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! 13 Data Analyses Descriptive statistics were conducted to investigate Research Question 1: What is the length of time between parent's initial concerns and the diagnosis of Autism Spectrum Disorder? Lag t ime was calculated by subtracting the age at which the parent first reported concern s from the child's age at the time of their first psychological evaluation and then calculating the average for the subjects of this study. R egression analys e s were conducted to investigate Research Questions 2 and 3: What is the relation ship between symptom severities as measured by the Autism Diagnostic Observation Schedule Second E dition ( ADOS 2) Comparison Scores and length of time between initial concerns and diagnosis? and What factors are related to the amount of time between ini tial concerns and diagnosis? Specific pairwise comparisons were then conducted based upon significant factors found in the regression analyses to further clarify relationships.

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! 14 Table I: Demographics Variable N Minimum Maximum Mean Std. Dev. Report Age 120 2.583 14.833 7.811 3.179 First Concern 119 0.00 13.75 3.831 2.654 Lag Time 120 0.083 14.333 3.988 2.858 ADOS 2 Score 120 3 10 7.36 1.629 Demographics Percentage Sex (Male=1) 85.0 African American 1.7 Asian Pacific .8 Caucasian 80.7 Hispanic 5. 0 Other 11.8 English Spoken at Home 98.3 Spanish Spoken at Home .9 Arabic Spoken at Home .9 Access to Special Education Services 54.17 Family History of Psychological/Emotional Difficulties 55.0 Family History of Autism 19.17 Family History of Spee ch Difficulties 15.83 Family History Total (n = 118) 70.34 Immunizations 90.83 Aggressive Behaviors 64.17 Bedwetting Behaviors 38.33 Cruel Behaviors 8.33 Destructive Behaviors 36.67 Disobedient Behaviors 60.83 Distractible Behaviors 79.17 Eating B ehaviors 45.0 Hair Pulling Behaviors 13.33 Masturbation Behaviors 8.33 Mood Swing Behaviors 54.17 Poor Concentration Behaviors 60.83 Self Injurious Behaviors 30.83 Poor Sleeping Behaviors 46.67 Temper Behaviors 70.0 Fear/Worry Behaviors 41.67 Tota l Behaviors (0 5) 32.76 Total Behaviors (6 10) 56.90 Total Behaviors (11 15) 10.34 Referrals School 14.2 Doctor/Pediatrician 16.7 Insurance Company 7.5 Children's Hospital 17.5 Psychologist/Psychiatrist 13.3 Other Therapist (e.g. BCBA, OT, SLP) 1 0.0 Programs/Clinics (e.g. DU, Aspire) 3.3 Self referred 5.8 Other (e.g. friend of practice) 9.2 Missing Data 2.5 Education Mother (n = 118) Father (n = 117) 10 th Grade .9 11 th Grade 12 th Grade 13.6 16.2 High School Total 13.56 17.09 1 yr. College 6.8 4.3 2 yr. College 10.2 11.1 3 yr. College 3.4 3.4 4 yr. College 38.1 35.0 College Total 58.47 49.49 Graduate School Total 27.97 29.06

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! 15 CHAPTER IV RESULTS Lag Time Between Initial Concerns and D iagnosis of ASD Lag time was found to range fro m 1 month to 14 years, 4 months. The average lag time found in the data set was almost 4 years ( 3.988 years SD = 1.63) ; meaning subjects on average received a diagnosis of ASD nearly 4 years after the parents reported initial concerns Rela tionship B e tween ( ADOS 2) Comparison Scores and Lag Time A multiple regression analysis was conducted to answer the second research question : D o ADOS 2 Comparison Scores predict the length of time between initial concerns and diagnosis. When analyzing data for lag t ime it was found that the data were positively skewed. Calculating the natural log of lag time accounted for the positive skew, creating a new variable This new variable was then used in both regression analyse s. Model 1 contains the ADOS 2 Comparison Sc ore variable (ADOS). Model 2 includes the squared version of ADOS to determine if the relationship between ADOS and Lag Time was curvilinear. Assumptions of regression were checked and met. However, there were no significant results found in this regressio n analysis Relationship Between Various Demographic V ariables and Lag Time A second multiple regression analysis was performed to determine significance of the effect of demographic variables on lag time The second regression analysis (Table II ) includ ed the following variables: access to special education services, total behavior, family history, maternal and paternal highest education completed, and various referral sources. Model 1 of the regression was comprised of access to special education servic es, Model 2 includes total behaviors, Model 3 includes family history, Model 4 adds education level,

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! 16 while Model 5 includes referral sources. Assumptions of regression were checked and met. All five models of the second multiple regression were found to be significant at the p < .05 level. In all nested models, access to special education was the only variable found to have a significant relationship with lag time even when all predictor variables were controlled for ( = 352 p < .01). After identifying access to special education as a significant predictor of lag time, a pairwise t test was conducted to further analyze this relationship. The test confirmed that access to special education and lag time are significantly positively correlated (N = 119, r = .285, p < .01 ), meaning that subjects of this study who had received special education services saw an increase in lag time compared to the overall subject population of this study.

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! 18 CHAPTER V DISCUSSION The purpose of the current study was to identif y lag time between parents' first concerns and initial diagnosis of ASD, as well as to identify factors that may influence lag time T he children in this study received a diagnosis of ASD on average nearly four years after their parents first became concer ned. The average lag time found in this study is consistent with that found in previous research where lag time ranged from 24 months to 60 months (e.g., Frith & Soares 1993 ; Howlin & Ashgarain 1999 ; Sivberg 2003 ; Fukijawara et al. 2011 ; Gordon Lipkin et al. 2016). This is a significant amount of time in which evidence based early intervention strategies could be working to improve language, behavior, and social interaction skills. The results of the present study indicated that there is no significan t relationship between ADOS 2 Comparison Scores and lag time Although it was hypothesized that more significant symptomatology would result in parents seeking professional assistance sooner, the insignificant findings of this current study correlate with Fujiwara et al.'s previous study in which degree of impairment w as not associated with lag time (2011). W hen analyzing the potential relationships between demographic factors and lag time a significant, positive correlation was found between access to sp ecial education and lag time regardless of the other var iables controlled for. No other factors were found to significantly predict lag time This was surprising given that previous research identified factors such as problems interacting with others and a lack of providers to increase lag time (Fujiwara et al., 2011; Gordon Lipkin et al., 2016) However, g iven the nature of this record review study, some of these factors could not be assessed in the present study. T his study did

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! 19 find a significant positiv e correlation between access to special education and lag time, a factor that has not been considered in previous literature. The results of the present study beg the question as to why children who receive special education services experienc e longer lag time in ASD diagnos i s Bitterman, Daley, Misra, Carlson, and Markowitz (2008) give insight into special education services of children with ASD, finding that parents of children with ASD took an average of 76.9 days to find services while parents of child ren with other disabiliti es took an average of 83.8 days. Bitterman et al. (2008) also found that parents of children with ASD reported increased effort to receive services when compared to parents of ch ildren with other disabilities. Children with ASD rec eived significantly more services ( 5.4 different types of services) than children with other disabilities (3.5 different types of serv ices; Bitterman et al., 2008) with s peech and language therapy being the most common service received by children with AS D in preschool, elementary, and secondary education ( Wei, Wag ner, Christiano, Shattuck, & Yu, 2014) Finally, Bitterman et al. found parental satisfaction related to the quality of services received to be 86.8% satisfaction for parents of children with ASD (compared with 90.1% satisfaction for parents of children with other disabilities ) with the overwhelming majority of parents of children with ASD reporting being satisfied or very satisfied with the program, the teachers, and the services received (2008). The findings of Bitterman et al. and Wei et al. suggest that the correlation between lag time and access to special education found in this study can be explained in part by satisfactory services received in the school setting. Furthermore, Charman, Howl in, Berry, and Prince (2004) found that children with ASD made more rapid development al progress in elementary school than they had in preschool in the areas of communication, daily living skills, and socialization over an 11 month period Specifically, th e children gained 10 age equivalent months in communication

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! 20 and 9 age equivalent months in daily living skills and socialization (Charman et al., 2004). Charman et al. report ed that autism symptom severity did not change over this time period (2004). Altho ugh this rate of development is still below the development of same aged peers, it could account for some of the associated correlation between special education and lag time found in this study as increased development may cause parents to pause in pursui ng medical diag noses or services outside of the school setting. Future studies should continue to focus on the impact of various factors on lag time. In order to further assess the relationship between special education services and lag time, a qualitativ e study using surveys and parent interviews is suggested. Parent input is crucial in identifying whether the positive correlation between special education and lag time is d ue to positive factors such as appropriate developmental progress and parental sati sfaction or negative factors such as difficulties determining whom to consult or a lack of providers ( Charman et al., 2004; Bitterman et al., 2008; Fujiwara et al., 2011; Lipkin Gordon et al., 2016). Limitations While the results from this study add to t he literature, there are several limitations that should be noted. First and foremost, the small data set (n = 120) limit ed the scope of this research study in terms of including all factors in the regression analyses Additionally, t here is a noticeable l ack of diversity in the data used for this study. With 80.7% (n = 96) of subjects identifying as Caucasian and 98.3% (n = 115) of subjects identifying as English speaking, th e generalizability of this study to other groups is limited Similarly, socioecono mic status was not considered in the data used for this study, as it was not collected.

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! 21 Another limitation relates to the data collection process itself. Since data were collected via a records review, no interview or follow up data could be collected. Su ch data could supply important information about the psychological evaluation process and the various routes parents take to receive a diagnos i s for their child. Furthermore records reviewed for this study were evaluated from January 1, 2014 until June 1, 2016, as this was when the most recent and most comprehensive intake questionnaires were implemented. This caused a large amount of data to be discarded due to variable and inconsistent intake questionnaire data. Finally, this study simply identified fac tors that may potentially be related to lag time It does not answer any questions related to cause and effect and why such factors may or may not impact lag time. Conclus ion T h e tremendous increase in ASD prevalence since the year 2000 continues to suppo rt the need for research of ASDs (Christensen et al ., 2016; Kroncke et al., 2016). This need is further supported by research that finds the importance of early intervention in children with ASD. One such piece related to early intervention in children wit h ASD is time lag between first parental concern and first diagnosis of ASD. Therefore, the purpose of this current study was to identify lag time experienced by children with ASD as well as factors that may increase or decrease lag time. Children who ha d accessed special education services experienced longer lag time between parents' first concern and a diagnosis of ASD. Continuing research utilizing parent surveys and interviews is needed to further clarify this relationship. It should be noted that thi s relationship might change given the addition of school identified autism to special education labels, further warranting continuing research. Factors influencing l ag or wait t ime,

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! 22 is a relatively new topic in research surrounding ASD. Therefore, this stu dy is simply a piece of the puzzle as research ers continue to examine lag time in children with ASD in hopes of connecting these children to ev idence based interventions at younger age s

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! 23 REFERENCES American Psychiatric Association (2013). Diagnostic a nd statisti cal manual of mental disorders (5 th ed.). Arlington, VA : American Psychiatric Publishing Autism costs society an estimated $3M per patient (2007). Science Letter via NewsRX LLC 184 Retrieved February 25, 2017, from go.galegroup.com/ps/i.d o?p=EAIM&sw=w &u=auraria_main&v=2.1&id=GALE%7CA365507728&it=r&asid=b19a070e179fc 24d470219d8d040eae5 Axelrod, S., Mc Elrath, K., & Wine, B. (2012). A pplied behavior analysis: Autism and beyond. Behavioral Interventions, 27 (1), 1 15. doi:10.1002/bin.1335 Bitterman, A., Daley, T. C., Misra, S., Carlson, E., & Markowitz, J. (2008). A national sample of preschoolers with autism spectrum disorders: Special education services and parent satisfaction. Journal of Autism and Developmental Disorders, 38 (8), 150 9 1517. doi:10.1007/s10803 007 0531 9 Charman, T., Howlin, P., Berry, B., & Prince, E. (2004). Measuring developmental progress of children with autism spectrum disorder on school entry using parent report. Autism, 8 (1), 89 100. doi:10.1177/13623613040 40641 Chiri, G., & Warfield, M. E. (2012;2011;). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16 (5), 1081 1091. doi:10.1007/s10995 011 0833 6 Christensen, D L ., Baio, J ., Van Naarden Braun, K ., Bilder, D., Charles, J., Constantino, J. N., Yeargin Allsopp, M. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years: A utism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012. MMWR Surveill Summaries 65(3), 1 23. doi : 10.15585/mmwr.ss6503a1 Corsello, C. M. (2005). Early intervention in autism. Infants & Young Children, 18 (2), 74 85. doi:10.1097/00001163 200504000 00002 Esler, A. N., Bal, V. H., Guthrie, W., Wetherby, A., Weismer, S. E., & Lord, C. (2015). The autism diagnostic observation schedule, toddler module: Standardized severity scores. Journal of Autism and Development al Disorders, 45 (9), 2704 2720. doi:10.1007/s10803 015 2432 7 Frith, U., & Soares, I. (1993). Research into earliest detectable signs of autism: What parents say. Communication 27 (3) 17 18. Fujiwara, T., Okuyama, M., & Funahashi, K. (2011). Factors i nfluencing time lag between first parental concern and first visit to child psychiatric services in children with autism spectrum disorders in japan. Research in Autism Spectrum Disorders, 5 (1), 584 591. doi:10.1016/j.rasd.2010.07.002

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! 24 Gordon Lipkin, E ., Foster, J., & Peacock, G. (2016). Whittling down the wait time: Exploring models to minimize the delay from initial concer n to diagnosis and treatment of autism spectrum disorder. Pediatric Clinics of North America 63(5), 851 9. doi: 10.1016/j.pcl.2 016.06.007 Greenspan, S., & Wieder, S. (1997). Developmental patterns and outcomes in infants and children with disorders in relating and communicating: A chart review of 200 cases of children with autism spectrum diagnoses. Journal of Developmental and Learning Disorders 1(1), 87 141. Harris, S. L., & Handleman, J. S. (2000). Age and IQ at intake as predictors of placement for young children with autism: A four to six year follow up. Journal of Autism and Developmental Disorders 30(2), 137 142. Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and asperger syndrome: Findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41 (12), 834 839. doi:10.1111/j.1469 8749.1999.tb00550.x Kroncke, A. P ., Willard, M., & Huckabee, H. (2016). Assessment of autism spectrum disorder: Critical issues in clinical, forensic, and school settings. Switzerland: Springer International Publishing. doi:10.1007/978 3 319 25504 0 Lord C Rutter M DiLavorne P C Risi S Gotham K & Bishop S L. (2012). Autism Diagnostic Observation Schedule, Second Edition (ADOS 2) Manual Torrance, CA: Western Psychological Services. Lovaas, O. I. (1987). Behavioral t reatment and normal educational and intellectual functioning in young aut istic children. Journal of Consulting and Clinical Psychology 55(1), 3 9. Newschaffer, C. J., Croen, L. A., Daniels, J., Giarelli, E. Grether, J. K., Levy, S. E., & Windham, G. C. (2007). The epidemiology of autism spectrum disorders. Annual Review of Public Health, 28 (1), 235 258. doi:10.1146/annurev.publhealth. 28.021406.144007 Ozonoff, S., & Cathcart, K. (1998). Effectiveness of a home program intervention for young children with autism. Journal of Autism and Developmental Disorders 28(1), 25 32 Rogers, S. J. (1996). Brief report: Early intervention in autism. Journal of Autism and Developmental Disorders, 26 (2), 243 246. doi:10.1007/BF02172020 Rogers, S. J., & Lewis, H. (1989). An effective day treatment model for young children with pervas ive developmental disorders. Journal of the American Academy of Child and Adolescent Psychiatry 28(2), 207 214. Rutter M, LeCouteur A, Lord C (2003, 2008). Autism Diagnostic Interview Revised Manual. Los Angeles: Western Psychological Services.

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! 25 Sapp ok, T., Diefenbacher, A., Budczies, J., Schade, C. Grubich, C., Bergmann, & T., Dziobek, I. (2013). Diagnosing autism in a clinical sample of adults with intellectual disabilities: How useful are the ADOS and the ADI R? Research in Developmental Disabi lities, 34 (5), 1642 1655. doi:10.1016/j.ridd.2013.01.028 Sivberg, B., Lunds universitet, Medicinska fakulteten, Institutionen fšr hŠlsovetenskaper, Faculty of Medicine, Department of Health Sciences, & Lund University. (2003). Parents' detection of earl y signs in their children having an autistic spectrum disorder. Journal of Pediatric Nursing, 18 (6), 433 439. doi:10.1016/S0882 5963(03)00139 8 Skinner, B. F. (1976). About behaviorism New York: Vintage Books. Skinner, B. F. (1953). Science and human behavior New York: Macmillan. Skinner, B. F. (1957). Verbal behavior United States: Appleton Century Crofts. Smith, T. (1999,2006 ). Outcome of early intervention for children with autism. Clinical Psychology: Science and Practice, 6 (1), 33 49. doi:10. 1093/clipsy.6.1.33 ViruŽs Ortega, J. (2010). Applied behavior analytic intervention for autism in early childhood: Meta analysis, meta regression and dose response meta analysis of multiple outcomes. Clinical Psychology Review, 30 (4), 387 399. doi:10.1 016/j.cpr.2010.01.008 Wei, X., Wagner, M., Christiano, E. R. A., Shattuck, P., & Yu, J. W. (2014). Special education services received by students with autism spectrum disorders from preschool through high school. The Journal of Special Education, 48 (3) 167 179. doi:10.1177/0022466913483576 Wolff, S. (2004). The history of autism. European Child & Adolescent Psychiatry, 13 (4), 201 208. doi:10.1007/s00787 004 0363 5 Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S ., Brock, M. E., Plavnick, J. B., Fleury, V. P., & Schultz, T. R. (2015). Evidence based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45 (7), 1951 1966. doi:10. 1007/s10803 014 2351 z

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! 26 APPENDIX A Client Registration Form Child/Minor Date Completed : ____________________________________ Client Legal Name (Last, First, MI) :_____________________________________________________________________ Physical Street Addre ss : _______________________________________________________________________________ City : _______________________________ State : _______ Zip Code : ______________________ Mailing Address (if different): _________________________________________________ __________________________ Date of Birth : __________________________ Age : ___________________ Sex : ______________ Social Security Number : __________________________________ School: ___________________________ _________________________ Grade : _____ ___________ Diagnosis : __________________________________________________________________________________ Other Conditions : __________________________________________________________________________________ Ethnicity of Client (check all that apply): Afri can American_____ Asian Pacific_____ Caucasian_____ Hispanic_____ Other_____ Language(s) spoken at home : __________________________________________________________________________ Religious/Spiritual/Cultural Beliefs : _____________________ ________________________________________________ Mother/Legal Guardian Name : _________________________________________________________________________ Mother/Legal Guardian Date of Birth: _______________________________ Relationship to client ( please chec k one ): Biological_____ Adoptive_____ Step_____ Foster_____ Address : __________________________________________________________________________________ Phone : Home__________________________ Work__________________________ Cell__________________________ Email : __________________________________________________________________________________ Occupation : _______________________________________________________________________ Highest Level of Education Attained (please circle): High School: 9 10 11 12 College: 1 2 3 4 Graduate School

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! 27 Employer Name: __________________________________________________________________________________ Employer's Address: _____________________________________________________________________________ __ Employer's Phone: __________________________________________________________________ Father/Legal Guardian Name: _________________________________________________________________________ Father/Legal Guardian Date of Birth: _____________________________ Relationship to client ( please check one ): Biological_____ Adoptive_____ Step_____ Foster_____ Address : __________________________________________________________________________________ Phone : Home__________________________ Work_____________________ _____ Cell__________________________ Email : __________________________________________________________________________________ Occupation : _______________________________________________________________________ Highest Level of Education Attained (please c ircle): High School: 9 10 11 12 College: 1 2 3 4 Graduate School Employer Name: __________________________________________________________________________________ Employer's Address: ________________________________________ _______________________________________ Employer's Phone: __________________________________________________________________ Parent's Marital Status (check): Married_____ Separated_____ Divorced_____ Single_____ Widowed_____ Child Lives with (check all that apply): Father_____ Mother_____Other_____Specify____________________________ Client's Siblings : Name______________________________________________ Age________ Gender_________ Name______________________________________________ Age________ Gender_____ ____ Name______________________________________________ Age________ Gender_________ Name______________________________________________ Age________ Gender_________ Client's Primary Care Physician : Name : _____________________________________________________ _____________________________ Clinic/Company Practice Name : _______________________________________________________________________

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! 28 Address : __________________________________________________________________________________ Phone : _________________________ _______________ Fax : __________________________________________ Email : __________________________________________________________________________________ Would you like Emerge to exchange clinical information with your child's PCP or other mental health/be havioral/medical provider? (please check one) Yes_____ No _____ N/A _____ ***If yes, please complete the included Release of Information form for each provider***

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! 2 9 APPENDIX B Client Questionnaire Client Name : ___________________________________________ Date : _____________________ PART 1 Concerns and Strengths What specific concerns do you have about your child ? ______________________________________________________________________________________ _________________________________________________ _____________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ____________________________________________ __________________________________________ ______________________________________________________________________________________ When did you first develop these concerns ? __________________________________________________________________________________ ____ ______________________________________________________________________________________ ______________________________________________________________________________________ _____________________________________________________________________________ _________ ______________________________________________________________________________________ ______________________________________________________________________________________ Whom have you seen previously about your concerns and what were you told about your child ? ______________________________________________________________________________________ ______________________________________________________________________________________ _______________________________________________________________ _______________________ ______________________________________________________________________________________ ______________________________________________________________________________________ __________________________________________________________ ____________________________ What are your child's interests and strengths? What does he/she like to do ? ______________________________________________________________________________________ _______________________________________________________________ _______________________ ______________________________________________________________________________________ ______________________________________________________________________________________ __________________________________________________________ ____________________________

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! 30 What questions would you like answered during the evaluation ( if applicable ) ? ______________________________________________________________________________________ _____________________________________________________________ _________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ What agency or individual referred you to Emerge? Name: ____________________________________________________________________ Address: __________________________________________________________________ Phone: ___________________________________________________________________ PART 2 Family History Is there a ny history of the following on either side of the child's biologic parents' families? If yes, please indicate with and "X" on Father's or Mother's side or other blood relative (please indicate who). Description Father Mother Other Blood Relative: Specify Psychological/Emotional Problems Intellectual Disability Learning Disabilities Birth Defects Seizures/Convulsions Tuberculosis Neurological Disease Diabetes Cancer Allergies/Asthma Gland Disorder/Thyroid Hearing Impairments Vision Impairments Hyperactivity Miscarriages Slow Development Autism Fragile X Speech Problems Other: Other: Please explain any conditions present on either side of the family _______________________ _______________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ PART 3 Pregnancy and Birth History

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! 31 Please list all pregnancies and miscarriages of child's biological mother ( in chronological order ). Birth Date Birth Weight Health or Development Description Please describe anything unusual or exceptional about the pregnancy and/or birth of the client. ______________________________________________________________________________________ ______________________________________________________________________________________ ___________________________________________ ___________________________________________ The baby was born : Early____ Late____ On Time____ Number of Weeks_________________ The baby was born by : Normal Vertex (head down) ____ Breech____ C section____ Baby's birth weight :_______lbs ________oz Le ngth : _________inches Apgar Score: ________________________ Are biologic parents related to one another by blood : No_____ Yes_____: How: _______________________________ Please check any of the following if present during pregnancy or birth Excessive Bleeding Fever Rash Prescription Drugs Toxemia Poor Weight Gain Illicit/Street Drugs Cigarettes Narcotics Alcohol Supplemental Oxygen Illnesses Please check any of the following if present during newborn period Jaundice Feeding Difficulties Suspicion of Infection Poor Temperature Control Poor Activity Other PART 4 Nutritional History Breast Fed : Yes____ No____ For how long ? __________ months Formula Fed : Yes____ No____ Name of Formula : _______________________________________ When were foods added : __________________________ When weaned to a cup : ___________________________ Weight at one year : _______lbs _______oz

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! 32 Do you have concerns about your child's current e ating habits/diet ? ______________________________________________________________________________________ ______________________________________________________________________________________ _______________________________________________________________ _______________________ ______________________________________________________________________________________ ______________________________________________________________________________________ PART 5 Development History Developmental Milestones: W rite down the age when your child first did each of the following. Write "NA" if your child has not done it yet. Write "DK" if you don't know/remember Smiled Held Head Erect Separated Easily from Mother Imitated Sounds Rolled Over Ate Unaided with Spoon Said "Mama" or "Dada" Sat Alone Knew Colors Said other single words Crawled Started Counting Followed simple directions Walked Alone Recited Total Alphabet Said 2 to 3 word phrases Rode Tricycle Read Words In gene ral, did you feel that your child developed : Quickly_____ Typically_____ Slowly_____ Temperament: Please comment on the following behaviors for your child as an infant and as a toddler How active is your child? __________________________________________ ______________________________ _______________________________________________________________________________ How well does your child deal with transition and change? ______________________________________________ ________________________________________ _______________________________________ _______________________________________________________________________________ How well does your child respond to new places, people and things? ______________________________________ ______________________________ _________________________________________________ _______________________________________________________________________________ What is your child's basic mood? Happy____ Sad____ Angry____ Quiet____ Other________________________ Is your child predict able in patterns of sleep, appetite, etc? ______________________________________________

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! 33 PART 6 Medical History Please indicate if the following are relevant to your child currently or in the past. Check "Yes" or "No". If yes, please explain. You may use the back of the form if you require additional writing space. Description Yes No Explanation/Specify/Treating Doctor's Name Abdominal Pain/Bowel Issues Allergies Anemia Birth Defects Blood Disorders Concussion/Head Injury Denta l Problems Drooling Ear Infections Eating Issues/Gags/Chokes Headaches Hearing Loss Heart Condition Hormone Problems Ingestion of Poisons Joint or Bone Problems Lung/Breathing Problems Seizures or Convulsions Significant Accidents Skin Disease Tics or Repetitive Behavior Urinary Problems/Infections Other Medical Concerns Child's Current Weight : ______lbs ______oz Child's Current Height : ______ft ______in Are your child's immunizations up to date ? Yes______ No______ List any hospitalizations and operations of the client. Please include approximate dates : ______________________________________________________________________________________ _________________________________________________ _____________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ List all medications that your child is curr ently taking

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! 34 Medication Name Dosage Frequency Prescribing Doctor Name Please indicate if the following actions are relevant to your child currently or in the past. Please check "Yes" or "No" and if yes, please explain/spec ify. You may use the back of the form if you require additional writing space Description Yes No Explanation/Specify Aggression Bedwetting Breath Holding Cruelty of Animals Destructiveness Difficulty Toilet Training Disobedience Distractibility Eating Problems Hair Pulling Masturbation Mood Swings Nail Biting Poor Concentration Self injurious Behavior (i.e.: head banging) Sleep Problems Temper Tantrums Thumb Sucking Unusual Fear Any other behavior issues that you would like to mention or explain ? ______________________________________________________________________________________ ______________________________________________________________________________________ ___________ ___________________________________________________________________________

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! 35 Does your child do any of the following? Please check "Yes" or "No" and explain if necessary. Description Yes No Explanation Get along with other children Become easily upse t or frustrated Become angry or destructive easily Become overactive Prefer to be alone Misbehave frequently Have difficulty sitting still Have any problem with awkwardness or clumsiness Listen well Follow spoken directions Please list all of your child's current and previous mental/behavioral health providers. Please also include any past developmental evaluations or testing your child has had Provider Name Service Provided Approximate Dates Outcome and/or Diagnosis How do you discipline your child? Please give an example ______________________________________________________________________________________ _____________________________________________________________________ _________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ________________________________________________________________ ______________________ ______________________________________________________________________________________ ______________________________________________________________________________________

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! 36 PART 7 Educational Profile Please indicate the schools your child has attended in chronological order from current to oldest School Name Grade/Level Dates Attended Has your child ever received special education services ? Please explain _____________________________________________ _________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ________________________________________ ______________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ Describe any current school program s ______________________________________________________________________________________ ______________________________________________________________________________________ _______________________________________________________________________________ _______ ______________________________________________________________________________________ ______________________________________________________________________________________ __________________________________________________________________________ ____________ Does your child or family utilize any other community resources (support groups, social services, etc)? Please list ______________________________________________________________________________________ ______________________________________ ________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ _________________________________ _____________________________________________________

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! 37 Please tell us what you consider to be important goals for your child in the following areas : Communication: ______________________________________________________________________________________ _____ _________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ Social Skills and Relationship Development: ______________________________________________________________________________________ ______________________________________ ________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ _________________________________ _____________________________________________________ Sensory Integration and Motor Skills Development: ______________________________________________________________________________________ _________________________________________________________________ _____________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ____________________________________________________________ __________________________ Structured Learning, Pre Academics and Academic Skills: ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ _________________________________________________________________________________ _____ Is your child or family currently involved in any legal issues? If yes, please explain ______________________________________________________________________________________ ___________________________________________________________________________ ___________ ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________ ________________

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! 38 As a family, we'd like to be able to ______________________________________________________________________________________ ______________________________________________________________________________________ _________________________ _____________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ____________________ __________________________________________________________________ Places in the community that we enjoy are ______________________________________________________________________________________ ___________________________________________________________ ___________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________ ________________________________ ______________________________________________________________________________________ Emerge, P.C. can help our family by. ______________________________________________________________________________________ ___________ ___________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ______ ________________________________________________________________________________ ______________________________________________________________________________________ If you feel that there is additional information you would like to provide that would he lp us to know you or your child better, please include that information below. ______________________________________________________________________________________ ______________________________________________________________________________________ ___ ___________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________