Department of Child and Youth Studies

Submitted in partial fulfillment

Of the requirements for the degree

Masters of Arts

Faculty of Social Science, Brock University
St Catharines, Ontario

MMISAGIBSWLIMARY
MOCK UNIVERSITY
SLCUTHARINESON

© September, 2006

Abstract

Autism is a developmental disorder that is characterized by abnormal social interactions and
communications as well as repetitive and restricted activities and interests. There is evidence of a
genetic component, as 5% of younger siblings are diagnosed if their older sibling has been
diagnosed. Autism is generally not diagnosed until age 3 at the earliest, yet it has been shown that
early intervention for children with autism can greatly increase their functioning. Because of this, it
is important that symptoms of autism are identified as early as possible so that diagnosis can occur as
soon as possible to allow these children the earliest intervention.

This thesis was divided into two parts. The first looked at the psychometrics of two proposed
measures, the Parent Observation Checklist (POC), administered monthly, and the hifant Behavior
Summary Evaluation (IBSE), administered bimonthly, to see if they can be used with the infant
population to identify autistic symptoms in infants who are at high risk for autism or related
problems because they have an older sibling with autism. Study 1 reported acceptable psychometric
properties of both the POC and IBSE in terms of test-retest reliability, internal consistency, construct
validity and predictive validity. These results provide preliminary evidence that parent report
measures can help to detect early symptoms of ASD in infants. The POC was shown to differentiate
infants who were diagnosed from a matched group that was not diagnosed by 3 years of age.

The second part of this thesis involved a telephone interview of parents who reported
developmental and/or behavior problems in their high-risk infants that may be early signs of Autism
Spectrum Disorder (ASD). During the interview, a service questionnaire was administered to see
what interventions (including strategies recommended by the researchers) their at risk infants and
affected older siblings were receiving, how satisfied the parents were with them and how effective
they felt the interventions were.

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Study 2 also yielded promising results. Parents utilized a variety of services for at risk infants
and children with ASD. The interventions included empirically validated early intervention (e.g.,
ABA) to non-empirically validated treatments (e.g., diet therapy). The large number of non-
empirically validated treatments parents used was surprising, yet parents reported being involved and
satisfied, and thought that the services were effective. Parents' perceptions of their stress levels went
down slightly and feelings of competence rose when they accessed services for their infants.

Overall, the results of this thesis provide new evidence that parent-report methods hold
promise as early detection instruments for ASD in at-risk infants. More research is needed to further
validate these instruments as well as to understand the variables related to the parents' choice of
early intervention for their at risk and affected children.

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Acknowledgments

I would first like to thank all of the families that contributed to this project through either
study for all of their time and effort. The families were very eager to help and those I talked to were
very interested in the project and its possible repercussions. I appreciate the look that I gained into
their lives and want to thank them all very much.

I would also like to thank Dr Maurice Feldman, my supervisor, for his guidance and help
through all stages of this research. His help was invaluable, and his research insight and experience
were invaluable and helped me along in the execution of this thesis.

Acknowledgements should also go out to Heidi Penning, who is involved with the
prospective study with ASD-CARC, for getting me relevant appendices as well as data for the
analyses that were run. Thank you for all your help.

Danielle Savona was also a great help throughout the analyses of the first study with her
knowledge of SPSS. Thank you Danielle for all your time and hard work in managing the database.

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Table of Contents

Abstract 2

Acknowledgments 4

Table of Contents 5

List of Tables 7

General Introduction

[ What is Autism? 8

t Comorbid Conditions 8

1 Genetic Risk 9

» Possible Primary Deficits 9

Autism Spectrum Disorders 10

Purpose of Current Studies 12

Study 1 : Initial validation of parent-report measures of early symptoms of ASD in at-risk infants. . .13

Common Concerns in the First Years 13

Diagnosis and Early Identification 13

Early Features of Autism: Retrospective studies 16

Early Features of Autism: Prospective studies 23

Lack of Research in Early Detection and Justification for Current Research 25

Research Questions and Hypotheses 26

Test-retest reliability 26

Internal consistency 26

Construct validity 26

Predictive validity 27

Method 27

Participants 27

Materials 28

Analyses 29

Results 31

POC and IBSE internal consistency 32

POC test-retest reliability 32

POC and IBSE construct validity 33

Predictive validity 33

Discussion 34

Study 2: Parent-selected interventions for infants at risk of ASD and affected siblings 37

Autism Interventions 37

Effectiveness of Parent-Managed Programs 44

EIBI Drawbacks 44

EIBI Supports 45

Justification and Research Questions 46

Research questions 46

Method 47

Participants 47

Materials 47

Procedure 48

Design 49

Results 49

Discussion 53

General Discussion 55

References 57

Appendix A: POC 67

Appendix B: IBSE 76

Appendix C: ASQ 77

Appendix D: Family Information Questionnaire 83

Appendix E: Service Questionnaire 90

Appendix F: Information and Consent Forms 98

List of Tables

Table 1: Early Signs and Features of Autism: Retrospective Studies 18

raZ?/^ 2: Test-retest reliability for the POC 32

Table 3: Interventions used in Treating Autism Spectrum Disorders 38

Table4: Most Popular Services Selected by Parents 50

Tofr/c 5; Infant Results 52

TflZ?/^ 6; Affected Siblings Results 52

8

General Introduction
What is Autism?

Autism is a developmental disorder seen as far back as 1747 when a middle-aged man was
observed as having deficits in social relationships, along with severe mental retardation and
abnormal language (described as what is now known as echolalia) (Wolff, 2(X)4). First described in
1943 by Kanner (Filipek et al., 1999), autism is marked by the presence of abnormal or impaired
social interactions (e.g., poor eye contact and nonverbal communication), as well as poor awareness
of others' emotions and communications (e.g., poorly developed language, echolalia), along with
restricted and repetitive activities and interests (Fein, Robins, Liss, and Wateriiouse, 2001). These
characteristics define the diagnostic criteria for autistic disorder (AD) in DSM-IV-TR (American
Psychiatric Association [APA], 2000). In order for a diagnosis to occur, symptoms must be apparent
through delays or abnormal functioning by the age of 3 in at least one of "social interactions,
language as used in social communication, or symbolic or imaginative play" (APA, 2000, p. 71).

Autism disorder typically occurs three to four times more frequently in males than females
(Filipek et al., 1999). As the severity of mental retardation increases, this ratio diminishes (APA,
2000; Croen, Grether, & Selvin, 2002; Filipek et al., 1999; Fombonne, 2003) as illustrated by
Fombonne (2003) as 1.9:1. In the same smdy conducted by Fombonne (2(X)3), it was illustrated that
the prevalence of mental impairment was 70% (approximately 1700 out of 2400 participants). Thirty
percent had mild to moderate impairment while 40% had severe to profound impairment.
Comorbid Conditions

There are a variety of comorbid conditions that accompany autism including, most often, an
associated diagnosis of mental retardation (MR) (APA, 2000; Croen et al., 2002; Fein et al., 2001;
Fombonne, 2003) in approximately 75% of those with autism (Croen et al., 2002). Epilepsy was
another commonly cited comorbid condition, although prevalence rates were not listed (APA, 2000;

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Fein et al., 2001; Fombonne, 2003). Other possible comorbid conditions include Tourette's
syndrome and schizophrenia (Fein et al, 2001), specific biomedical conditions (APA, 2000; Fein et
al., 2001), tuberous sclerosis and fragile X (Fombonne, 2003).
Genetic Risk

There is an increased risk (5-8%) for autistic disorder in siblings (APA, 2000; Wolff, 2004).
Risks of developmental difficulties are also higher in siblings (APA, 2000). Twin studies strongly
suggest a genetic basis for autism (Wolff, 2004). Filipek et al., (1999) reviewed some twin studies in
which it was shown that Folstein and Rutter, in 1977, reported a concordance rate of 36% for
infantile autism between 1 1 pairs of monozygotic (MZ) twins, with no concordance rate between 10
pairs of dizygotic (DZ) twins. It was shown, though, that 82% of the MZ twins, and 10% of the DZ
twins were concordant for some form of cognitive, social, or language deficits. Filipek et al., (1999)
also cited more recent studies where it was shown that 28 MZ twin pairs showed a "concordance rate
of 60% for DSM-IV autistic disorder, 71% for the broader spectrum of PDD or atypical autism, and
92% for an even broader phenotype of social and communication deficits with stereotyped
behaviors" (Filipek et al., 1999, p.457).
Possible Primary Deficits

It has been the focus of research in recent years to try and identify the primary deficit of
autism. Fein et al. (2001) have reviewed a few studies and have shown from their results that
cognitive deficits (e.g., language, memory and attention) are unlikely to be primary deficits. They
have also shown that although executive function and theory of mind are hindered in autism, they are
also unlikely to be the primary deficit. Fein et al. (2(X)1) also looked at possible biological causes of
autism through the review of prior research, and also cannot identify a primary deficit. They went on
to hypothesize that autism is possibly a mix of a variety of deficits, and is a "heterogeneous disorder"
(p.32). The DSM-rV-TR (APA, 2000) reports that laboratory fmdings show abnormal EEG readings.

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There have been a variety of genetic studies that have attempted to isolate certain genes (Gillberg,

1998, Chudley et al., 1999; Wolff, Clifton, Karr, & Charles, 2002). Researchers have been

identifying possible candidate genes (identified on the basis of their potential role in the

pathophysiology of ASD) with some success (Menold, 2001; Nurmi et al., 2001). The results that

have been produced thus far are promising, yet there has been no determined genetic or biological

mechanism.

Autism Spectrum Disorders

Autism is a spectrum disorder with a variety of disorders on it. Filipek et al. (1999) defined
autistic spectrum disorders (ASD) as referring to "a wide continuum of associated cognitive and
neuro-behavioral disorders, including, but not limited to, three defining features: impairments in
socialization, impairments in verbal and nonverbal communication, and restricted and repetitive
patterns of behavior" (p. 439). This implies that although autism is included in ASD, there is also a
wide range of other disorders that fall on the spectrum that are not autism, according to the DSM-IV-
TR. Other disorders on the ASD spectrum include pervasive developmental disorder not otherwise
specified (PDD-NOS), Asperger's disorder, Rett's disorder, and Childhood disintegrative disorder.

According to the DSM-IV-TR (2000), a diagnosis of PDD-NOS is made when "severe and
pervasive impairment in the development of reciprocal social interaction associated with impairment
in either verbal or nonverbal communication skills or with the presence of stereotyped behavior,
interest, and activities, but the criteria are not met for a specific FDD, schizophrenia, schizotypal
personality disorder, or avoidant personality disorder" (p. 84).

A diagnosis of Asperger's syndrome (AS) should be made when there is severe and
sustained impairment in social interaction, there are restricted and repetitive patterns of behavior,
interests, and activities, and these have a "clinically significant impairment in social, occupational, or
other important areas of functioning" (APA, 2(X)0, p.80). In contrast to a child with autism, a child

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with Asperger's syndrome will have normal language development and cognitive functioning at age-
appropriate times, as well as "adaptive behavior and curiosity about the environment in childhood"
(p.81). The disorder should also not be better defined as PDD-NOS or schizophrenia.

Rett's disorder is also on the autism spectrum, but has been diagnosed only in females (APA,
2000). DSM-IV-TR (2000) recommends that a diagnosis of Rett's disorder should be made when
there has been a deceleration of head growth between 5 and 48 months, when previously acquired
purposeful hand skills have been lost between the ages of 5 and 30 months (with the development of
stereotyped hand movements), when there has been a loss of social engagement early in the course of
the disorder, when poor gait or trunk movement emerges, and when severely impaired language
development and psychomotor retardation emerge. Rett's differs from AD in its above-mentioned
sex ratio, as well as in deceleration of head growth, the loss of purposeful hand movements, and the
appearance of poor gait (APA, 2(X)0). The disorder should also not be better addressed as CDD, AS
or AD.

Childhood disintegrative disorder (CDD) is another on the ASD spectrum. CDD has a
marked regression in many areas of functioning following a period of at least two years normal
development, i.e. age-appropriate communication, social relationships, play and adaptive behavior
(APA, 2(X)0). After 2, but before 10, "the child has a clinically significant loss in at least 2 of the
following areas: expressive or receptive language, social skills or adaptive behavior, bowel or
bladder control, play, or motor skills" (APA, 2000, p.77). In order for diagnosis to occur, it is also
not better accounted for by another specific PDD or by schizophrenia. It is also known as Heller's
syndrome, dementia infantilis, or disintegrative psychosis (APA, 2000).

It has been reported that autism spectrum disorders are "are not rare disorders, but instead
are more prevalent in the pediatric population that cancer, diabetes, spina bifida, and Down
syndrome" (Filipek et al., 1999, p. 440). Prevalence rates vary from 10-20 per 10,000 to 30.8/10,000

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for autistic disorder alone (Filipek et al., 1999); DSM-IV-TR (APA, 2000) reported a prevalence rate
of autism at 5/10,000 individuals. In 2005, Fombonne updated prevalence rates to 13/10,000 for
autistic disorder, and 60/10,000 for all FDD's. He referred to the estimate of FDD's as the "best
estimate for the prevalence of FDD's currently available" (Fombonne, 2005, p.287).

Furpose of Current Studies
This research was conducted for two primary reasons. The first was to identify psychometric
properties of low-cost, parent report measures for detecting autism during infancy. The second was
to begin to catalogue and evaluate interventions that parents utilize when early symptoms of autism
are detected in their infant. Our intervention, which consisted of advice and support from the
interviewer, was evaluated alongside any others that the parents chose to utilize. The children that
participated in the study were tracked specifically because they were at risk for autism due to having
an older sibling with autism. As part of the ongoing Autism Spectrum Disorders-Canadian American
Research Consortium (ASD-CARC) prospective study, the infants were tracked through parental
report and home video, and not through clinical measures, as was previously done in a study by
Zwaigenbaum et al. (2005). The additional procedure in this thesis was a phone call to participating
parents (who reported that their infants were showing developmental and/or behavioral problems) to
complete the service questionnaire. This research was an ecologically valid, naturalistic assessment
of interventions these infants received, as chosen by the parents. We monitored what interventions
the families chose to select on their own (e.g., diet, sensory integration) in addition to behavioral and
developmental recommendations provided by the research team.

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Study 1 : Initial validation of parent-report measures of early symptoms of ASD in at-risk infants
Common Concerns in the First Years

Although autism usually is not diagnosed until after 24 months of age, many parents suspect
something is wrong before that (Gray & Tonge, 2001). The most common concerns raised in the first
two years of life, prior to diagnosis, are language delays, speech problems, and social development.
Symptoms are usually always present before 3 years of age (APA, 2000; Filipek et al., 1999). Woods
and Wetherby (2003) identified variability of behavior, lack of appropriate referrals when concern is
expressed and/or the family's lack of knowledge or access of the services available to them as
primary factors in precluding early detection of autism. Autistic disorders follow a continuous course
throughout life, though communicative language and high IQ are important prognostic features by
the age of 5 (APA, 2000; Fein et al., 2001), i.e., if children possess these characteristics, they
generally have better outcomes. School-age children may show developmental gains, while some
adolescents may show some behavioral improvements while others may see deteriorations (APA,
2000).
Diagnosis and Early Identification

It has been previously demonstrated that early intensive behavioral intervention (EIBI), when
initiated prior to the age of 5 can lead to great improvement in autistic symptomology (Lovaas,
1987), thus it is beneficial to identify symptoms and receive a diagnosis as early as possible. But can
the diagnosis be made early (i.e., under the age of 2) and continue to be stable at older ages? Cox et
al. (1999) showed that of the nine children they diagnosed as having autism at 20 months using the
Checklist for Autism in Toddlers (CHAT, Baron-Cohen et al., 2000) as a screening tool as well as
the Autism Diagnostic Interview-Revised (ADI-R, Lx)rd et al., 1994) (a "gold-standard" diagnostic
instrument, Filipek et al., 1999), and a variety of other standardized measures, none had a diagnosis
outside the ASD spectrum at 42 months. Notably, there were only 2 false negative diagnoses made

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where those children were given a diagnosis of other PDD at 20 months, and at 42 months, received
a diagnosis of autism. Cox et al. (1999) noted though, that by taking a spectrum approach, there were
no false negatives.

Robins, Fein, Barton and Green (2001) validated the Modified Checklist for Autism in
Toddlers (M-CHAT) and supported its use as a screening measure for autism. The measure, as well
as its subsets of the 6 most discriminating measures, was reliable and was able to differentiate those
with autism/PDD and all other children, as those with autism/PDD failed more items than all of the
other children. They were also significantly different on all of the items, except for enjoying being
swung/bounced. Further research conducted on the M-CHAT by Eaves, Wingert, and Ho (2006), did
not get quite the same results. They found a similar high sensitivity as Robins et al. (2(X)1) did, but a
lower specificity when the two were compared. Eaves et al. (2006) also did not find a significant
score difference between ASD and non-ASD children, as reported by Robins et al. (2001). Although
there was a significant positive correlation reported between the M-CHAT and the CARS, there was
no relation that was determined between the M-CHAT and the DSM-FV score (Eaves et al., 2006).

Eaves and Ho (2004) diagnosed autism at 2.5 years of age in 49 children suspected of having
autism. The ADI-R has a high sensitivity and specificity to identify autism in children with a mental
age of greater than 18 months, and the Childhood Autism Rating Scale (CARS) (Schopler, Reichler,
& Renner, 2002) can show significant differences between children with autism and those of normal
development at 2 years of age. Eaves and Ho (2004) monitored the children and then re-evaluated
them 1.5 years later where it was shown that 79% of the children stayed in the same diagnostic
category, while approximately 10% changed in each direction of diagnostic severity. Eaves and Ho
(2(X)4) go on to note the importance of monitoring possible early symptoms as those children who
have difficulties socially and with language at the age of 2 will rarely grow out of it without effective
intervention.

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The Screening Tool for Autism in Two-year-olds (STAT) is another screening measure that
is being used. Stone and Henderson (2006) identified through administration of the measure to
infants at risk for autism that by revising the scoring algorithm, the STAT could be used with
children as young as 15 months to discriminate between those who would receive an ASD diagnosis
and those who would not.

The Autism Observation Scale for Infants (AOSI) can distinguish siblings with ASD from
undiagnosed siblings and controls as early as 12 months (Brian, Zwaigenbaum, Roberts, Szatmari, &
Smith, 2006). This was determined by the collection of data from with infants at the age of 12 and 18
months(Brian, Zwaigenbaum, Roberts, Szatmari, & Smith, 2006).

Eaves et al. (2006) also reported on psychometric fmdings of the Social Communication
Questionnaire (SCQ). They found that this measure had similar sensitivity reports as previous
research, but that the specificity was lower. There was also a significant positive correlation between
the SCQ and the CARS (Eaves et al., 2006), indicating that the SCQ could be a viable screening
measure.

A new measure was also validated for use by Adrien, Roux, Couturier, Mavly, Guerin,
Debuly, et al. (2001) called the Behavior Function Inventory (BFI). The construction of this measure
was done so that there were precise and clear definitions of each characteristic behavior, attributing
and equal number of items to each functional category, and making it easily applicable to clinical
and research practice (Adrien et al., 2001). Adrien et al. (2(X)1) validated the measure with 131
developmentally delayed children ranging in age from 23 to 147 months, with diagnoses of AD, MR,
or PDDNOS. Psychologists experienced with FDD administered the measure. It was determined that
the BFI gives a precise evaluation of autistic symptoms and that the items included were reliable
(Adrien et al., 2001). Limitations included the fact that specialized staff are required to administer

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the BFI, and the fact that it is a 2-day observation, thus it could not be a routine measure given at
appointments.

A parent-report screening tool, the Developmental Behavior Checklist - Primary Carer
Version (DEC - P), is a 96 item screening tool that is quick and easy (Gray & Tonge, 2005) to use.
Parents complete the form, and, because it can differentiate those with autism and DD from those
with DD and no autism, parents can get the appropriate referral (Gray & Tonge, 2(X)5). The
sensitivity, specificity and positive predictive values are all acceptable for developmental screening
(Gray & Tonge, 2005).

As can be seen from above, there are many measures that are being developed, as well as a
few that have been published attempting to detect early symptoms of autism in at risk infants. There
have been many screening tools recently developed and they are able to differentiate those with AD
and those who are either typically developing or developmentally delayed. This is a large step in the
right direction for early identification of at risk infants.
Early Features of Autism: Retrospective Studies

Investigators have also attempted to identify early features of autism in the first two years of
life (see Table 1). From the review of various articles, using retrospective home movies,
retrospective parent reports, as well as controlled observations. Gray and Tonge (2001) identified a
variety of early features conmion in children who later go on to be diagnosed as autistic. These
include deficits in social interactions such as lack of facial expressions, gestures and eye contact.
Deficits in conmiunication were also noted such as lack of babbling, gaze monitoring, and imitation;
also reported were unusual or repetitive preoccupations, mouthing of objects, acting deaf, sensitivity
to noise, sleep problems, self-injury, lack of responsiveness to name and behavioral variability. Other
studies found that infants later diagnosed as autistic oriented less to their name (Osterling & Dawson,
1994; Osteriing, Dawson, & Munson, 2002; Werner, Dawson, Osteriing, & Dinno 2000), had a lack

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of gestures, including pointing (Osterling et al, 2002; Osterling & Dawson, 1994), lack of joint
attention behaviors (Baranek, 1999; Osterling et al, 2002; Osterling & Dawson; 1994; Wemer et al

^ 2000; Woods & Wetherby, 2003), deficits in early social and prelinguistic behaviors (Osterling et al,

2002; Osterling, & Dawson, 1994; Woods & Wetherby, 2003), lack of showing objects (Woods &
Wetherby, 2(X)3), self-stimulation (Osterling & Dawson, 1994), excessive mouthing of objects and
social touch aversions (Baranek, 1999), more frequent repetitive actions, as compared to typically
developing children (Osterling et al, 2(X)2) as well as a lack of response to voice, lack of
understanding gesture, and unusual use of others' bodies (Baranek, 1999; Osterling & Dawson,
1994; Osterling, et al., 2002; Werner, et al., 2000).

Wetherby, Woods, Allen, Cleary, Dickinson et al. (2(X)4) identified 9 markers through
videotape coding that differentiated ASD from typical development (TD) and developmental delay
(DD). Those were the lack of: appropriate gaze, warm and joyful expression, sharing enjoyment or
interest, response to name, showing, coordination of gaze, gesture, sound and facial expression,
unusual prosody, repetitive movements (body, arms, fingers), and repetitive movements with objects.
The lack of response to contextual cues, lack of pointing, lack of vocalizations with consonants and
lack of playing conventionally with many toys differentiated those with ASD from the TD group.

Crais, Watson, Baranek, Boyd, Miller, et al (2(X)6) recently identified through home
videotapes that it can be seen that between the ages of 9 and 12 months, those infants with ASD had
deficits in behavior regulation and joint attention gestures, whereas Watt, Wetherby, Barber, McCoy,
and Book (2(X)6) found that repetitive movements with the body were seen between the ages of 18

% and 24 months, differentiating between those diagnosed with ASD versus those diagnosed DD or

those who TD. In a similar study, Shumway, Wetherby, Kahn, Plumb and McCoy (2006), also
looked at videotapes to find that those with ASD has distinct patterns of communication between the

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ages of 18 and 24 months (such as lower rate of total acts, acts with game and acts with
vocalizations) than did those who were diagnosed with developmental delay or typical development.
Table 1
Early Signs and Features of Autism: Retrospective Studies

Study Participants Measures Observation Design

Early Features
Identified

Osterling & 22 children CARS,

Videotapes Retrospective Orient less to
analysis name, lack of

gestures, lack
of joint
attention,
deficits in early
social and
prelinguistic
behaviors, self-
stimulation
Videotapes Retrospective Lack of joint
video attention,

analysis excessive

mouthing of
objects, social
touch aversion
Werner, 30 infants VABS-CD, Videotapes Retrospective Orient less to

Dawson, 15 ASD (8 M-P scales, analysis name, and lack

Dawson,

11 autistic

BSID, M-P

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1994

(10 males, 1

scales, LIPS,

birthday

female)

SBIS,

1 1 typically

WISC-R

developing

(10 males, 1

female)

Age: 12
months old

Baranek,

32 children

CARS,

Videotaj

1999

19 males
13 females
Ages: 9-12
months

VABS

rO

19

Osterling, &

autistic, 7

LIPS, SBIS,

Dinno, 2000

PDDNOS)
15 typically
developing
Ages: 8-10
months

WISC-R

Osterling,

54 children

SBIS,

Dawson &

20 with

CARS,

Munson,

ASD(18

VABS,

2002

males, 2

structured.

females)

standardized

where 14

interviews

had MR and

with parents

6 had

noniial

intellectual

ability

14 with MR

(10 males

and 4

females)

20 typically

developing

(18 males, 2

of joint

attention

Videotapes Retrospective Orient less to
of birthdays analysis name, lack of

gestures, lack
of joint
attention,
deficits in early
social and
prelinguistic
behaviors,
more frequent
repetitive
actions

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females)
age range:
2.5 to 10
years of age
Wetherby, 54 children VABS,
Woods, (18ASD, 18 ADOS,

Allen, DDandlS MSEL;

Cleary, TD) from CSBS DP

Infant and
Toddler
Checklist

Dickinson, 13-26
et al. (2004) months

Videotapes Retrospective Lack of:
of the video appropriate

behavior analysis gaze; warm and

sample joyful

expression;
sharing
enjoyment or
interest;
response to
name; showing;
coordination of
gaze, gesture,
sound and
facial

expression;
unusual
prosody;
repetitive
movements
(body, arms.

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Crais,

56 infants

Preschool

Watson,

between 9

Vineland

Baranek,

and 12

scores

Boyd,

months (27

Miller, et al.

ASD, 3 DD

(2006)

and 7 TD);
29 infants
between 15
and 18

Videotapes

fingers);
repetitive
movements
with objects;
lack of
response to
contextual
cues;lack of
pointing; lack
of vocalizations
with

consonants;
lack of playing
conventionally
with many toys
Retrospective Those
video diagnosed with

analysis ASD had a lack

of gestures
compared to
the DD and TD
comparison
groups

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months (19
ASD, 3 DD,
7TD)

Watt, 123 children None

Wetherby, between the

Barber, ages of 1 8

McCoy, & and 24

Book (2006) months (50
ASD, 50 TD
and 23 DD)

Shumway,

123 children

Wetherby,

between the

Kahn,

ages of 18-

Plumb, &

24 months

McCoy

(50 ASD, 50

(2006)

TD, and 23

Videotapes Retrospective ASD group had
video significantly

analysis higher number

of repetitive
movements
with object, as
well as
repetitive
movements
with the body;
they also had a
higher rate of
total repetitive
and stereotyped
behaviors

Videotapes Retrospective Those with
video ASD showed

analysis

significantly
less total acts,
acts with gaze,
and acts with

\n\C

W/

23

DD) vocalizations

than those with
TD or DD; the
ASD group
also used less
deictic and
representational
gestures
Note: CARS: Childhood Autism Rating Scale, BSID: Bayley Scales of Infant Development, M-P
scales: Merrill-Palmer Scales, LIPS: Leiter International Performance Scales, SBIS: Stanford Binet
Intelligence Scale, WISC-R: Wechsler Intelligence Scale for Children - Revised, VABS: Vineland
Adaptive Behavior Scales, VABS-CD: Vineland Adaptive Behavior Scales - Communication
Domain; ADOS: Autism Diagnostic Observation Scale; MSEL: Mullen Scales of Early Learning;
CSBS DP: Conmiunication and Symbolic Behavior Scales Development Profile
Early Features of Autism: Prospective Studies

There is only one study that has looked at autism in infants (in the first year of life) and tried
to identify early markers of the disorder prospectively (Zwaigenbaum et al., 2005). The researchers
looked at infants at biological risk for autism because they had an older sibling who was already
diagnosed, as well as a low risk group and a control group of similarly matched infants through the
use of a longitudinal prospective study. They focused primarily on extensive clinical assessments
through various measures such as the Autism Observation Scale for Infants (Brian et al., 2(X)6)
(which the authors developed due to a lack of measures detecting autistic symptoms in infants), as
well as measures that assessed temperament, language and cognitive development. They found that
infants who scored above the threshold on the Autism Diagnostic Observation Scale (ADOS - Lord

â– ><â–  'H'

iw

24

et al., 2000) at 24 months, had been quite passive, had fewer imitations, were less responsive to their
name, as well as efforts to gain their attention between the ages of 6 and 12 months. Informal home
and clinical observations showed they also had fewer vocalizations (Zwaigenbaum et al., 2005). At
12 months, those same infants who scored above the threshold on the ADOS at 24 months, were
shown to have less eye contact, abnormal visual attention and social responsiveness, as well as
excessive visual fixation. They also had unusual use of play materials, were irritable, and displayed
intense sensory responses in addition to delays in verbal and pre-verbal skills (Zwaigenbaum et al.,
2005).

There also have been a few other prospective studies in which children in their second year of
life were followed until they were diagnosed. These prospective studies revealed a number of
features consistent with the retrospiective studies. At 18 months, the failure of three key items on the
CHAT, a common screening tool for autism, was linked to a future diagnosis of autism (Baron-
Cohen et al, 1996; Baron-Cohen, Allen, & Gillberg, 1992; Woods & Wetherby, 2003). These key
items were protodecelarative pointing, gaze monitoring, and pretend play (Baron-Cohen et al., 1996;
Baron-Cohen, Allen, & Gillberg, 1992; Woods & Wetherby, 2003). In fact, failing two or more of
lack of pretend play, protodeclarative pointing, social interest, joint attention and social play on the
CHAT at 18 months has been shown to be indicative of an autism diagnosis at the age of 30 months
(Baron-Cohen, Allen, & Gillberg, 1992).

According to Osterling and Dawson (1994) "how often a child looked at others was the single
best predictor of a child's later diagnosis" (p.256), while Robins et al. (2(X)1) described looking at
behaviors that reflect empathy, pretend play, joint attention and imitation, when practitioners were
considering an autism diagnosis in young children.

There have recently been more prospective studies run trying to identify autism symptoms
earlier. For example, Ozonoff (2(X)6) indicated that her research is suggesting that social orientating

;?!'!

. .:.i0'J

an:

25

as well as face and affect processing can be detected in infant siblings of children with autism as
early as 12 months. Ozonoff (2006) also indicates that these same siblings present unusual
phenotypes (i.e., early language, joint attention, social engagement as well as imitation).

Brian et al. (2006) also identified some markers prospectively that differentiate those siblings
who would be diagnosed with ASD versus those who would not be. They did this through the
administration of the AOSI and found the following markers: atypical visual tracking, orienting to
name, imitation, eye contact, social smile, behavioral reactivity, and social interest and affect as
differentiation between siblings with ASD, versus those without ASD and low risk controls.

A population based sampling procedure was also used prospectively (Wetherby, 2006), by
screening a general pediatric sample for communication delays. Parent-report as well as a screening
and referral processes were part of the study to determine risk, in which case autism-specific parent
report measures were used. There were no preliminary results presented, but this screening could be
promising to catch more at risk children.
Lack of Research in Early Detection and Justification for Current Research

To date, Zwaigenbaum et al. (2005) is one of the few studies that have tracked autistic
symptoms in at-risk infants in their first year of life. As has been demonstrated, early intervention for
children with autism is important for their future outcomes, yet the problem remains that autism is
usually diagnosed much later, and thus young children may not benefit to the full degree that they
could from early interventions. Further research is greatly needed to identify the early signs of autism
in high-risk infants, and intervene as early as possible, preferably before diagnosis to prevent autistic
behaviors and developmental delay. Research is just starting on designing a less expensive, more
readily available screening tool, based on parental report. Parent report measures have been shown to
be a cost-effective way to screen for developmental problems in young infants (Glascoe, Foster, &
Wolraich, 1997). Once such instruments are available, then it is likely that more studies will evaluate

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26

the effects of very early intervention on pre-diagnostic infants who are beginning to show behavioral
and developmental problems characteristic of autism.

The current study is important to run, because, as previously mentioned, there are very few
published measures that have attempted to detect autism symptoms in infants under 12 months of age
(Zwaigenbaum et al, 2005). The Zwaigenbaum study relied on extensive expert assessment of the
infant in a specialized clinic, and studies are just beginning to validate less costly parent-report
measures. In this study, we determined the reliability and validity of parent-report measures that are
being used in the ASD-CARC prospective study, under the direction of M. Feldman and J. Holden
(co-principal investigators). If the measures are valid, then autistic symptoms may be able to be
identified by parents earlier in any child, leading to earlier and potentially more effective
intervention, giving children the best chance at reversing the developmental course of ASD.
Research Questions and Hypotheses

The research question was: is parent report a feasible, reliable, and valid method of tracking possible
early signs of ASD in biologically at-risk infants? This question was addressed through the following
hypotheses:

Test-retest reliability. It was hypothesized that an acceptable correlation of .8-.9 will be seen
for 1 -month test-retest reliability for both the Parent Observation Checklist (POC) and the Infant
Behavior Sunmiary Evaluation (IBSE).

Internal consistency. A correlation of .7-. 9 will be seen to establish internal consistency,
using Cronbach's alpha and split-half reliability.

Construct validity. The POC and IBSE will show convergent validity as demonstrated by
correlations in the .8-.9 range with each other, that they will each show moderate correlations, (in the
.4-.6 range) with the Ages and Stages Questionnaire (ASQ) communication and social subscales, and
that they will each show divergent validity with low to no correlations with the ASQ motor subscale.

y-oo)

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;!.."<t;-

eds0

ugij

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27

The ASQ is a questionnaire developed by Bricker and Squires (1999) which monitors infant
development through a variety of questionnaires based on infant age sequences.

Predictive validity. It was also hypothesized that the POC will be able to show predictive
validity of an ASD diagnosis through the monitoring of children over 3 years to see if diagnosed
children had significantly higher POC scores (within the first 12 and 24 months of life) than a
matched group of undiagnosed at-risk infants.

Method

We began a preliminary analysis of the psychometric properties of the POC and IBSE with
approximately 80 high risk infants, between 1 to 73 months of age as of November 2005, as neither
measure has yet been tested with an infant population. The ASQ was not subjected to these tests as it
has already been shown to display sound psychometric properties through prior research (Bricker &
Squires, 1999). The data was provided to us through the prospective study, and the authors did not
administer the measures described below. As described above, we addressed test-retest and interrater
reliability, internal consistency, construct and predictive validity.
Participants

The participating families in this research were those who have already been part of the ASD-
CARC prospective study. These 80 participating families have at least 2 children, 1 with ASD and a
younger infant who is at risk for ASD. The age range of the children who were already diagnosed
was 3 years, 3 months of age to 15 years, 1 1 months. The age range of the infants was 1 month to 3
years, 3 months. The mean age when the infants first took the POC was 5.1 months, while their last
POC was at an average of 17.2 months. The mean age when the infants received their first IBSE was
9.04 months while the mean age of their last IBSE was 23.36 months. We did not have access to any
other demographic information of the participants thus it is not known how representative this
sample is of all families with one autistic child and another at risk.

â– >/

M:

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Mil;*

ir.

â– 'â– 4'

ot

wv

ixmn/

28

Materials

Parent Observation Checklist (POC). The primary caregiver of the infant (usually the
biological mother) filled out this questionnaire (see Appendix A) monthly, online or by phone
interview.

The POC (Feldman and Ward, 2(X)1) consists of 61 questions, rated on a 4-point scale, where
1 is typical development (i.e., no problems), and 4 would indicate severe autistic symptoms (1/2
scores are allowed). The POC was created by extending "downward" the age range of the items in
the subscales of the Childhood Autism Rating Scale - CARS (Schopler et al., 2(X)2). The initial
items were distributed to autism researchers who were asked to indicate whether they thought the
item was reflective of the area of development identified by the name of the subscale and at what age
an infant may demonstrate the developmental skill or a problem with it (e.g., responding to name;
vocal imitation). The researchers also were given the opportunity to suggest new items.

Like the CARS, the POC is able to portray the degree of possible autistic symptoms the
infant is exhibiting, even if the child does not score above the cut-off on existing instruments. The
POC subscales (borrowed from the CARS) are: I. Relating to People, II. Imitation, HI. Emotional
Response, IV. Body Use, V. Object Use, VI. Adaptation to Change, VII. Visual Response, VIII.
Listening Response, IX. Taste, Smell, and Touch Response and Use, X. Fear and Nervousness, XI.
Verbal Communication, XII. Nonverbal Communication, XIII. Activity Level, XIV. Level and
Consistency of Intellectual Response, and XV. General Impressions. Note that subscale validity was
not tested in this study.

Infant Behavior Summary Evaluation (IBSE). Adrien et al. (1992) developed the IBSE through
retrospective videotapes of children (aged 6 through 48 months) who were or later became autistic.
There are 19 validated items, which are scored on a scale of to 4 where is typical development
and 4 is indicative of ASD (see Appendix B). According to Adrien et al. (1993), there were 14 items

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•It'"

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29

that differentiated between infants who developed autism, and matched infants who did not develop
autism. Although the IBSE was originally designed as an observation instrument and used to detect
autism in children 18 months or older, we adapted its use here to see if it could be used as a parent-
report measure for at-risk infants, thus the IBSE that is referred to throughout this thesis is a parent
version.

The Ages and Stages Questionnaire. Filipek (2000) recommended the use of the ASQ 2â„¢*
edition (Bricker & Squires, 1999) (see example of 6 month questionnaire: Appendix C) in the
American Academy of Neurology and the Child Neurology Society (AANCNS) practice parameter
report. The ASQ is a validated parental interview (Bricker & Squires, 1999) that monitors an infant's
development. The ASQ was administered every 2 months through a telephone interview, coinciding
with the age sequence of the ASQ. The ASQ has 6 subscales: I. Communication, II. Gross motor. III.
Fine motor, IV. Problem solving, V. Personal-social, and VI. Overall. This measure was used in the
telephone interviews for the prospective study, and was not directly administered in this study, but
the responses parents provided were used in data analyses.
Analyses

Internal Consistency. Internal consistency determines whether the items in a scale are
homogeneous; a scale is internally consistent if the items in that scale are highly correlated, showing
that all items measure the same thing (DeVellis, 1991). It is closely related to the number of items in
the scale, and lack of items is one of the main reasons for a low alpha level (Nunnally & Bernstein,
1994). This was not anticipated to be a problem in this study, as both the POC and IBSE have a
sufficient number of items (the POC has 61 while the IBSE has 33).

In order to measure internal consistency, we used Cronbach's alpha, as it has been suggested
that it is the best way to measure internal consistency when using a scale that includes Likert items
(Janda, 1998). In addition, alpha provides an accepted estimate of reliability (Nunnally & Bernstein,

i ja

<v

'- -0

30

1994), and is the most widely used measure of reliability (Aron & Aron, 1999). We also measured
internal consistency using split-half reliability. This reliability measure correlates the average score
on half of the items on the questionnaire to the average score on the other half (Aron & Aron, 1999).
Inconsistencies that are reflected in the two test scores likely reflect an inconsistency in the test itself
because the test is only administered once, thus minimizing the chances that carry-over effects,
reactivity effects, and changes over time would affect the scores (Murphy & Davidshofer, 2(X)1). The
odd-even split was used as this ensured that equal numbers of items from the beginning, middle and
end appear in both halves (Murphy & Davidshofer, 2(X)1). We calculated the POC and IBSE internal
consistency using SPSS version 10. -

Test-Retest Reliability. Test-retest reliability measures the correlation of at least two tests
administered to the same people on different occasions (Aron & Aron, 1999; Janda, 1998). If the
variables should be stable over time, then a reliable measure of the variables should give the same
measure at different points in time (DeVellis, 1991; Graziano & Raulin, 20(X)). The scores of
different test administrations must remain consistent over time in order to have confidence in them
(Kline, 1986). In order to measure this, we correlated the one-month test-retest scores from the POC,
as this method is most often quantified with the correlation coefficient (Graziano & Raulin, 2(X)0).
POC test-retest reliability was calculated and correlations were obtained across one-month intervals
when the child was 3-4 months, 6-7, 9-10, 12-13, 15-16, 18-19, 21-22 and 23-24 months old. IBSE
test-retest reliability was not calculated as the test was only given every 2 months and there was an
insufficient sample size for this (there was no n greater than 11).

Construct validity. Construct validity determines whether the scores of a particular test relate
well to the construct it is addressing (DeVellis, 1991; Graziano & Raulin, 2000; Murphy &
Davidshofer, 2001). Murphy and Davidshofer (2001) state "the stronger the match between the
expected correlations and the actual correlations between test scores and behavior measures, the

'u. ;>n'.

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,Xti

31

stronger the evidence of construct validity" (p. 159). We addressed two types of construct validity,
convergent and discriminant. Convergent validity is the correlation between two measures that are
expected to be correlated (DeVellis, 1991; Janda, 1998) - the higher the correlation, the better the
convergent validity. Discriminant validity is defined as the absence of correlations between measures
that are unrelated to the construct being measured (DeVellis, 1991; Janda, 1998). In order to measure
convergent validity, we correlated the POC and IBSE with each other and each with the ASQ
communication and social subscales (because these two skills are considered primary deficits in
autism). Divergent validity was correlated using the POC and IBSE against the ASQ gross and fine
motor subscale that would not be expected to show as strong a relationship.

The above analyses were all done through analyzing data that was already collected. It was
entered into SPSS, version 10.0 and the necessary calculations to obtain internal consistency, test-
retest reliability, interrater reliability as well as construct and discriminant validity were run.

Predictive validity. In order to measure the predictive validity of the POC, we identified the
infants followed in the ASD-CARC prospective study up to age 3 who did and did not receive an
ASD diagnosis (through information of a diagnosis from the prospective study). Using an
independent t-test, we compared the mean POC total scores, of all POC's given up to and including
12 months of age, of the seven diagnosed children to seven children who were not diagnosed,
matched (as closely as possible) on gender and the age of the first and last POC. I hypothesized that
those children who received a diagnosis would have higher POC scores than those who did not
receive a diagnosis.

Results

The analyses of the POC and IBSE demonstrated acceptable reliability and validity of each
measure. A^ is 80 for all analyses unless otherwise noted.

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32
POC and IBSE Internal Consistency. Correlations were calculated for Cronbach's alpha as
well as split-half reliability measures: The POC Cronbach's {n = 35) alpha was .9 and the POC split-
half reliability was r = .75. This indicates that throughout the measure, the questions are all
addressing the same construct. The IBSE Cronbach's alpha {n = 25) was r = .9 and the IBSE split-
half reliability was r = .88, indicating, as above that the IBSE is measuring the same construct
throughout.

POC Test-Retest Reliability. One-month test-retest total scores of the POC when the child
was 3-4, 6-7, 9-10 and 12-13, 15-16, 18-19, 21-22, and 23-24 months old were calculated separately.
These ranges were chosen to sample across the first 2-years of life and where the most data were
available. The POC test-retest reliabilities were: 3-4 months, r = .94 (n = 34); 6-7 months, r = .98 {n
= 54); 9-10 months, r = .83 (n = 58); 12-13 months, r = .68 (n = 71); 15-16 months, r = .86 (n = 60);
18-19 months, r = .98 (n = 58); 21-22 months, r = .89 (n = 52); and 23-24 months, r = .99 (n = 40).
These results suggest that the POC is highly stable over one-month intervals, over the first 24 months
of life, although the reliability between 12-13 months was lower than the others.
Table 2
Test-Retest Reliability for the POC

Age (months) Reliability (r)

3-4 (n = 34) .94

6-7 (n = 54) .98

9-10 (n = 58) .83

12-13 (« = 71) .68

15-16 (ai = 60) .86

18-19 (n = 58) .98

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33

21-22 (/I = 52) .89

23-24 (M = 40) * .99

POC and IBSE Construct Validity. POC and IBSE convergent validity yielded a r = .77, p <
.01, (/I = 35) when they were correlated with each other, which suggests that both measures were
measuring the same construct. As predicted the POC was moderately negatively correlated with the
ASQ social domain, r = -.44, /? < .01, but the IBSE correlation with the ASQ social domain was
weak, r = -.21. Both the POC and IBSE were moderately correlated with the ASQ communication
domain with an r's = -.55 and -.45, respectively, p < .01.

In order to determine divergent validity, each measure was correlated with the ASQ gross and
fme motor subscale. As predicted, the POC and EBSE were not significantly correlated with the gross
motor subscale, r's= -.20 and -.18 respectively. However the POC and IBSE were significantly
negatively correlated with the ASQ fme motor subscale, r's = -.53 and -.58 respectively (p < .01).
This shows that the POC is measuring a different concept than the ASQ gross motor scale, but there
may be some moderate overlap between early signs of ASD and fme motor abilities.

Predictive Validity. There were 7 infants at age 3 years who had been independently
diagnosed with an ASD. Each diagnosed infant was matched with another child, who had not been
diagnosed by age 3 years on gender and age on first and last POC (within one month). Thus, in each
group, diagnosed infants /i = 7, and undiagnosed infants n = 7.

The mean age of the first POC for the diagnosed infants was 4.57 months (SD = 2.29) and
3.86 months {SD = 1.68) for the undiagnosed infants. The mean age of their last POC for the
diagnosed infants was 14.86 months (SD = 8.75) and 19 months (SD = 8.91) for the undiagnosed
infants. The mean total number of POC's for the diagnosed infants was 7.86 (SD = 3.29) and 8.71
{SD = 3.95) for the undiagnosed group. The mean total number of POC's up to 12 months was 5.00

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34

(SD = 1.41) for the diagnosed group, and 4.14 (SD = 3.29) for the undiagnosed group. There were no
significant differences in any of these measures.

Predictive validity of the POC was evaluated by comparing the mean number of elevated
POC items (a score of 3 or greater on any item) for the diagnosed infants and matched undiagnosed
infants. The mean number of elevated items on all POC's in the diagnosed group was 4.74 {SD =
6.16), while the mean number of elevated POC items for the undiagnosed infants was .55 (SD = .52).
One-tailed tests were used because an a priori prediction was made that diagnosed children would
have higher POC's than the undiagnosed children. A test of independent samples showed that the
diagnosed infants had significantly more elevated POC items across all POC's, r(12) = 1.79, p < .05
(one-tailed). looking at POC's just up to 12 months of age, the mean number of elevated items for
the diagnosed infants was 4.59 (SD = 6.20), and .55 (SD = .52) for the undiagnosed group. An
independent r-test conducted on the mean number of elevated POC items only up to 12 months of
age was t(l2) = 1.72, p < .06 (one-tailed). Thus, the analyses of predictive validity of the POC
suggests that it may differentiate at risk infants who eventually receive an ASD diagnosis from
similar at risk infants who do not receive an ASD diagnosis by 3 years of age.

Discussion

Study 1 has shown that both the POC and IBSE demonstrate acceptable reliability and
validity, shown through a variety of analyses. They each had acceptable internal consistency as
demonstrated with Cronbach's alpha and split-half reliability, and the POC showed acceptable one-
month test-retest reliability across different age ranges within the first 24 months of life. Both the
POC and IBSE showed acceptable convergent validity, despite the IBSE and the social domain of the
ASQ, while they also showed divergent validity with the ASQ gross motor subscales, as expected.

Perhaps the most important finding of Study 1 was the evidence supporting the predictive
validity of the POC. Despite the sample of diagnosed infants only being seven, the number of

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35

elevated POC items over the first 24 months differentiated children who eventually were diagnosed
with ASD from those that were not; the predictive results for the first 12 months of the POC
approached significance. The possibility that a parent-report measure may be able to detect infants
(even in the first year of life) at higher risk for developing ASD is very exciting and warrants further
study. Further research should also look at which POC items or subscales are most predictive of
subsequent diagnosis.

Another interesting finding from this study was the correlation between fine motor skills and
early signs of autism as indicated through the correlation between the ASQ fine motor subscale and
the POC. There is increasing evidence that children with autism have delays in fine motor
functioning (Berkeley, Zittel, Pimey, & Nichols, 2001; Hauck and Dewey, 2(X)1), thus starting to
explain the unexpected finding.

Future research is needed with a larger sample size to verify the findings and extend these
preliminary findings. The IBSE test-retest reliability and predictive validity need to be established, as
well as interrater reliability on the POC and IBSE. For instance, the mother and father could
complete the POC independently and their scores would be compared. Likewise, the videotapes sent
in by the families could be scored by "blind" autism experts using the POC to compare with the
parents' ratings of the child at the same age, thus establishing external reliability of the measure.
More research is needed on the predictive validity of the POC, such as examining which POC
subscales and items are most predictive of future diagnoses of ASD. A larger sample size is needed
to determine the predictive strength of the POC's given in the first year of life. Another area that
needs to be addressed in future research is external criterion validity, as all these results were based
on parent-report.

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36

As we have demonstrated acceptable reliability and validity of the POC (and to a lesser
extent the IBSE), we used parent report measures to detect infants from the sample who were
showing problems indicative of ASD and looked at what services they received.

37
Study 2 - Parent-selected interventions for infants at risk of ASD and affected siblings
Autism Interventions

There are probably thousands of interventions that are currently being used with children who
have ASD. The more popular interventions include floor time, gentle teaching, facilitated
communication, sensory integration, special diets, vitamin therapies, and secretin, among many
others (see Table 3). The only one with empirical support is Early Intensive Behavioral Intervention
(EIBI), initiated by Ivar Lovaas. Lovaas (1987) was the first person to demonstrate effects of
teaching autistic children in a "special, intense, and comprehensive learning environment" (p.4).
EIBI is a program in which young children (aged 2 until 5 years) receive one-on-one intensive
intervention for up to 40 hours per week. There is a focus on discrimination learning, operant
conditioning, data collection, and following written programs. Early in treatment, there is reliance on
one-to-one training and discrete trial training in their own home to maximize success. As the child
progresses, focus is shifted to more naturalized environments such as preschool and playgroups.
Targets range from imitation and establishing appropriate toy play in the first year, to teaching
appropriate emotions, observational learning and preacademic tasks in the third year; targets are
developmentally sequenced based on each child's individual needs. Mainstreaming the children into
public kindergarten is the goal.

Lovaas (1987) was successful in mainstreaming 9 of 19 participants from the experimental
group (47%) into kindergarten as "best outcome" children. "Best outcome" referred to children who
achieved an average IQ (mean = 99), along with no aides. Only 10% (2 of 19 subjects) of the
treatment group had to be placed into a special education class for autism or mental retardation. The
fact that there was no randomization was a large limitation, but in a follow-up of the study children 6
years later, McEachin, Smith and Lovaas (1993) showed that the children who had the best early

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38

outcomes had the same (regular) school placement, had maintained their gains in intellectual
functioning, and showed more adaptive and fewer maladaptive behaviors than the control group.
Table 3
Some common Interventions used in treating Autism Spectrum Disorders

Intervention Purpose/Rationale Authors

Methods

Research

Early Intensive To provide Lovaas,

Behavioral children with 1987;

Intervention autism the skills McEachin,

necessary to Smith &

succeed in society Lovaas,
1993

Intensive one The only empirically
on one validated intervention;

discrete trial McEachin, Smith &
teaching Lovaas, 1993 did a follow-

up of Lovaas 1987 study
which showed
maintenance of results

Special Diets

Improving the

Knivsberg,

Exclusion of

Studies have shown some

-

behavioral and

Reichelt,

casein and/or

improvement in autistic

cognitive

Hoien, &

gluten from

behaviors (Knivsberg, et

functioning of

Nodland,

the diet

al., 2002; Whiteley, et al..

people with

2002;

1999) yet others have

autism through

Whiteley,

mixed results (Bowers,

the removal of

Rodgers,

2002)

casein and/or

Savery, &

gluten from their

Shattock,

diets

1999;
Bowers,

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39

Secretin

Vitamin
Therapy

2002

Injecting children Horvath, Injections or Double-blind, randomized,

with autism with 1998; ointment crossover design have

the hormone indicated the effects of

secretin in the
hopes of altering
the behavior and
core features of
autism

"The treatment of Pauling,
mental disease by 1968 as
the provision of cited in
optimum Pfeiffer et

concentrations of al., 1995
substances
normally found in
the human body"
(Pauling, 1968 as

secretin are not
significantly different than
the use of a placebo
(Ratliff-Schaub, Carey,
Reeves, & Rogers, 2005);
and that there are no
clinically significant or
sustained gains in the
behavior or core features
of autism (Handen &
Hofkosh, 2005)
Combination Little research could be
of vitamin B6 found; Pfeiffer et al.,
and 1995, supported the

magnesium research through a

literature review; Page
(2000) contends that
efficacy is dependent on
which vitamin is used

40

cited in Pfeiffer,

Norton, Nelson

and Shott, 1995)

Sensory

Aims to help Ayers

, 1979 Delivered in a

Subject of little research;

Integration

organize

one on one

Smith, Mnizek &

sensations from

setting in

Mozingo (2005) state that

the body and

which an

research has shown it to be

environment so to

occupational

"ineffective

act more

therapist and

and...unvalidated"

effectively in the

the child

(p.345) as shown in Green,

environment

engage in

1996, studies that have

various

been conducted tend to

activities portray its ineffectiveness

children enjoy

such as

massage,

swinging, and

rocking

(Green, 1996)

Involves client Very controversial in

who uses a research; originators claim

typewriter or effectiveness based on
feelings, which Biklen, Saha alphabet board qualitative analysis (e.g.
they have & Kliewer, to point at Biklen, 1990); empirical

Facilitated To help autistic Biklen,

Communication clients to convey 1990,
their thoughts and 1992a;

41

previously been 1995, as
unable to convey cited in
Jacobson,
Foxx, &
Mulick,
2005

letters to
convey their
thoughts while
a facilitator
holds their
arm in order
to keep it
stabilized,
help point,
pull back arm
after pointing
and to offer
support

research: facilitated
communication has "not
been verified in numerous
peer-reviewed journals"
(p.364) (Jacobson, Foxx,
& Mulick, 2005); much
research supports that the
source of communication
is the facilitator

Floor Time

Metz, Mulick &

Greenspan

Done through

Little support for this

Butter (2005)

& Weider,

direct one on

intervention and few

describe this

1998;

one

studies have been

approach as

Greenspan,

interactions

published; Metz, Mulick

helping the child

2000;

and help

& Butter (2005) mention

to master, in

Greenspan,

parents

only one study supporting

developmental

2001

become more

its efficacy, but it is

sequence, six

effective

descriptive and not

foundational

teachers;

experimental; a search of

milestones in

interactions

psychology databases

order they have

include play

PsycArticles and

â–  â– ..>;-{

42

the capacity for
communication,
thinking and
emotional coping
(p.254); help
parents to become
organizer in their
child's life

Gentle

Nonviolent

McGee,

Teaching

approach to teach

1985a, b, c;

individuals to feel

McGee,

; i

safe, engaged.

Menolascin,

unconditionally

Hobbs &

loved and to feel

Menousek,

love towards

1987;

others (Cullen &

McGee &

Mudford, 426);

Menolascin,

there is currently

1991; all as

no clear

cited in

description of

Cullen &

gentle teaching.

Mudford,

its processes or

2005

intended

environments, PsycINFO yielded no

child-led results

interactions,

and tailoring

the

interactions to

the child's

individual

style (p.254)

Emphasis on Lack of research is again

the nature of apparent; Cullen &

interactions Mudford (2005) show that

between client what has been done has

and caregiver; shown gentle teaching as

seen as type of not effective (e.g. Jordan,

bonding; how Singh, & Repp, 1989;

this is done Barrera & Teodoro, 1990;

was not Cullen & Mappin, 1998)

effectively

described

anywhere

i.H'jr

43

outcomes (Cullen
& Mudford,
2005)

Adapted from Scheuermami & Webber, 2002
Green, Bremian, and Fein (2002) conducted a single-case EIBI study, which also lends
credibility to the use of this intervention with infants. The participant was a girl aged 1 year and 2
months, diagnosed unusually early with autism. She went through a program designed by the second
author, similar to that of Lovaas, until she was 4 years 5 months old. Examples of the skills worked
on were: readiness, imitation, preacademic and social skills among others. The program had her
going to increasingly integrated schools (preschools) throughout her program for longer and longer
periods of time, with a one-on-one aide. As a result of the treatment program, the child was enrolled
in a regular public school kindergarten with no diagnosis and no aides.

Smith and Antolovich (2000) studied supplemental interventions for children in Lx)vaas' EIBI
treatment. They did this through mail-out surveys, which identified conmion supplemental
interventions for children with autism, as well as a rating of the impact of each intervention: positive,
negative, or neutral. The most popular supplemental interventions that parents identified were
speech-language therapy, megadoses of B6 with magnesium, sensory integration therapy, and
elimination diets. They were generally rated as beneficial (50%) or neutral (38%).

Smith and Antolovich (20(X)) then followed up that study by setting up telephone interviews
with primary caregivers of children who were receiving consultation from the primary author's EIBI
treatment site. In the interview, parents were asked about the four most popular interventions listed
above, and such questions as the start and stop date, specific techniques used, source that parents
heard about it, as well as the features of the intervention that contributed to their decision to
implement it and what problems their child had to start the intervention at that time. It was

rll r^iT;

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44

determined from this series of questions that positive effects were reported, that speech therapy
generally began prior to EIBI in contrast to the other 3 interventions that started after EIBI. How
parents heard about the intervention and the factors contributing to starting the intervention varied
depending on what intervention it was (e.g. found out about speech at the time of diagnosis from
professionals involved in the diagnosis, versus fmding out about diets from other parents).
Effectiveness of Parent-Managed Programs

There are a number of characteristics of intensive behavioral programs, and they differ
whether it is a parent-based program or a program that is run by professionals. Mudford, Martin,
Eikeseth, and Bibby (2001), highlighted some characteristics of United Kingdom based parent-
managed behavioral treatments, and illustrated some problems with them. Parent-managed programs
are becoming increasingly prevalent as there is a current shortage of certified EIBI workers that can
provide Lovaas' therapy (Mudford et al., 2001). Parents are thus taking things into their own hands,
and through the use of consultants, devise their own program and then run it out of their homes.
Mudford et al. (2001) as well as Bibby, Eikeseth, Martin, Mudford, and Reeves (2002) wanted to see
if these parent-run programs would be as successful as the Lovaas program. It was determined in
both studies that parent-run EIBI programs may not be as successful as when being run in a center,
as parents may not follow the protocols as rigorously.
EIBI Drawbacks

A large drawback to EIBI is the cost, thus possibly limiting the number and types of families
who participate in them, if they cannot get outside funding. Jacobson, Mulick and Green (1998)
stated that although expensive - approximately $60,(XX) per child per year for 40 hours per week -
EIBI results in considerable savings in the long run by reducing life-long need for specialized (and
expensive) supports for some children. Jacobson and Mulick (2(XX)) state the importance of being
sure the benefits of EIBI exceed the costs, and through saving money on future supports (e.g..

•t ■l',-

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45

interventions throughout adulthood), it obviously does. Jacobson et al. (1998) justify the upfront
expense of EIBI based on potential long-term cost-benefit and the absence of other evidence-based
interventions.
EIBI Supports

Supports (for example, support groups and family support) in running an EIBI program are
imperative. Hastings (2003) has shown that when there is large amount of support available, siblings
of the children receiving EIBI adjusted better, as evidenced by their score on the Autism Behavior
Checklist, which was used as an index of autistic symptomology in autistic children. Hastings (2003)
also showed there was no negative effect on sibling's adjustment, though these siblings were not
necessarily better adjusted than other children in the country. Hastings and Symes (2002) have
shown that "therapists in less supportive or cohesive ABA teams, working with children with more
severe symptoms of autism, and who are also experiencing high levels of stress will have less of a
belief in their efficacy as a therapist" (p.339). Thus, the more severe the child and the more support
the therapists have, the more efficacious the therapists will feel. Moes (2002) reported that when
family components are integrated into the intervention, this also helped with the family's perception
of the therapy, and that self-reports from the parents in regards to EIBI showed a good sustainability
within the family life. This is important as it affects the parent's perceptions of EIBI and its
effectiveness.

Hastings and Johnson (2001) reported stress levels of parents involved in the EIBI program,
and found that these levels were not any higher than those of other parents of children with autism
who were not involved with the EIBI program, thus demonstrating that the program does not place
undue stress on parents (or, in fact, that stress is ameliorated by other factors such as program
efficacy), and in fact, lowers stress the longer that their child is involved in EIBI. This is imperative
for programs such as EIBI as parents are already concerned about their child's development;

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46

implementing programs such as EIBI should not put undue stress on parents, which has been shown
to be the case. Other than social supports, other factors that were associated with lower stress levels
included parental adaptive coping strategies, and their beliefs about the efficacy of the intervention.
Justification and Research Questions

Due to the lack of research with infants with and at risk for autism in their first year, this
study is designed to assess parent-selected interventions for their infants who are genetically at risk
for ASD, as well as the choices of services that they are providing to their older children who have
been diagnosed. Once we looked at these services, we could determine which ones worked the best
according to parents and see which ones minimized symptoms to the greatest degree.

This study describes interventions parents choose to implement for their at risk infants (prior
to diagnosis), as well as for their affected children. Using a service questionnaire, we looked at
which interventions parents utilized, whether the interventions were evidenced-based, whether the
parents felt those interventions helped or not, and whether there were any side effects. I also asked
whether these interventions decreased parental stress and improved parents' self-efficacy in dealing
with their children and their behaviors.

Research Question. The research question was what interventions do parents use for their at-
risk infants and their affected siblings? We were interested to fmd out about all the interventions and
services the children are receiving, what the parents thought of the interventions, and whether the
interventions change parental stress and self-efficacy, i.e., whether intervention helped them to deal
better with their children's presenting problems. The last question we looked at was the prevalence
of non-empirically validated services being used with the diagnosed older siblings.

J/

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47
Method
Participants

The subjects in this study were families recruited from the larger prospective study. All
families had at least 2 children; the older child had a diagnosis of autism, thus the infant was at a
higher risk for developing autism as well (high-risk infants). I looked specifically at 23 families in
which parents had reported (on the POC, IBSE, and/or during the ASD-CARC prospective study
interview) that the infants were showing developmental and/or behavior problems that may be
indicative of early signs of ASD. Some of these families had interventions and some had not.
Materials

There were six primary measures that were used. They include the Family hiformation
Questionnaire, the Service questionnaire. Parent Observation Checklist (POC), the hifant Behavior
Summary Evaluation (IBSE), and the Ages & Stages Questionnaire (ASQ).

Family Information Questionnaire. This questionnaire (Appendix D) provided us with
general demographic information about the families. Questions such as family income, health,
education and age were asked in this questionnaire for all members of the immediate family.

Service Questionnaire. This questionnaire (Appendix E) is adapted from one that has been
used with over 200 young children with developmental delay (Feldman, 2006). The questionnaire
was used to assess the type and number of interventions that the infant was receiving, to what extent
the parents were involved in the intervention, how satisfied they were with the intervention and to
what extent they thought each intervention helped their child. The questionnaire covered everything
from birth to current, and start and end dates (if relevant) were recorded. In order to determine
answers to the above questions, each service had 5 questions that corresponded to it, including level
of parental involvement, rated on a 7-point Likert scale with 7 being the highest level of involvement
and 1 being the lowest. Also included was structure, the need/importance of the service (i.e., how

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48

much the parent wanted it), satisfaction and effectiveness. They were all rated on similar 7-point
Likert scales. In addition to these measures, we also asked the parents a variety of open-ended
questions relating to the interventions they provided their infant. These questions included ones such
as asking what specific interventions they hoped to receive in the future for their child, how they
found out about the current interventions that they were using, why they chose these particular
interventions as opposed to others, how involved they are in their child's therapy, and whether or not
there have been any side effects. Also of interest was how the parents perceived these interventions
as helping them to deal with stress and whether the interventions were seen as increasing parental
self-efficacy. These were addressed through retrospective questions at the end of the interview, and
were also measured by a similar 7-point Likert scale.

Popular treatments for young children with autism were listed and there was room for parents
to add others. The services listed included sensory integration, vitamin therapy, speech-language
training and behavioral interventions, and the (evidenced-based) advice that the interviewer from the
prospective study had given parents during telephone interviews was also included as a possible
service. The same service questionnaire was also completed about the services received for their
older child, already diagnosed with ASD.
Procedure

Interviews, As previously mentioned, parents of the high-risk infants were being interviewed
every 2 months, by an experienced, specially trained interviewer. During this interview, the
interviewer noted concerns and discussed them with the parents while administrating the POC (if the
parent had not already filled it out online), the ASQ and the IBSE. If parents requested, the
interviewer, who was experienced in autism, provided some advice, and sometimes sent some
written materials from evidenced-based intervention manuals.

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49

For Study 2, 1 contacted the parents, identified by the interviewer, who had reported that their
infant had problems. I sent a letter of invitation and consent form (see Appendix F). After obtaining
consent, I administered the family information questionnaire and the service questionnaire over the
phone.
Design

For each participant, I recorded parent responses on the Service Questionnaire. I then
averaged each answer to the questions of parental involvement, structure, need, satisfaction and
effectiveness. I also totaled how many children were receiving each service in order to determine the
most popular services. Parental levels of stress and competence were also averaged. These
calculations were each done separately for infants and the diagnosed group. Only scores where the
parents reported using a service were used. •

Results

Parents employed a variety of services for both their children, ranging from empirically
validated services, such as EIBI, to non-empirically validated ones such as diet therapy, vitamin
therapy and hippotherapy. See Table 3 for a complete list of all services parents were providing their
children, rank ordered in terms of the most popular service for the affected child. The most popular
services for the infant were advice from the prospective study interviewer (n = 1 1), followed by
speech therapy and daycare (n = 6), and then diet and vitamin therapy (n = 4). Overall, infants
received an average of 2.3 services (range 0-7), while their affected siblings received an average of
7.5 services (range 3-12).

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Table 4

Most Popular Services Selected by Parents (n=23)

SO

Service

Affected

Infant

Special Needs Worker

19

Behavioral Interventions

16

Speech-1 ^nguage Therapy

16

Regular Daycare

14

Diet Therapy

13

Vitamin Therapy

12

Occupational Therapy

12

Herbal Remedies

11

Specialized Preschool

11

Sensory Integration

10

Prescription Medication

7

Advice from ASD-CARC

5

Horseback Riding

5

(Hippotherapy)

Secretin

3

Physiotherapy

3

Day Camp (Special Needs)

2

Music Therapy

2

Floor Time

2

Chiropractor

1

1

2
6
6
4
4
2
2
2
3
3
11

1

1
1
1

â–  l'

<1>K

51

Developmental Therapy

MB- 12 Injections

Swimming

Assisted Technology

Auditory Integration

RDI

Special Education Program

Respite

Children's Health and

Development
Home Visit - Eating

Problems
Therapeutic Listening

1

1

An interesting finding was the number of services that parents were implementing that were
not empirically validated. We decided to look at the number of affected children who were receiving
EIBI only as a service versus those affected children receiving EIBI plus three or more eclectic
services and those receiving only eclectic services. We found that there were no children receiving
only EIBI, whereas 16 (69.6%) were receiving EIBI plus at least three eclectic treatments (range 3 to
11), and 7 (30.4%) children were receiving only eclectic treatments (range 3 to 9).

The rest of the service questionnaire was designed to look at parent involvement in the
therapy, structure, need/importance, satisfaction and effectiveness. Each was averaged according to
which group they were in (infant or affected child). For the infant group, on a scale of 1-7, where 1 is
the lowest and 7 is the highest, mean parent involvement was 6.3, structure was 5.8, need/importance
was 6.1, satisfaction was 5.9 and effectiveness was 5.7 (see Table 5).

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52

Table 5
Infant Results

Dimension (/i = 54) Mean

Parent Involvement 6.3

Structure 5.8

Need/Importance 6. 1

Satisfaction 5.9

Effectiveness 5.7

The mean values for the affected child were similar and were, for parental involvement, 6.3,
for structure 5.6, need/importance 6.4, satisfaction 5.3 and effectiveness 5.0 (see Table 6). The above
results indicate that parents report that they are involved, moderately satisfied, and think that services
are reasonably effective.
Table 6
Affected Siblings Results

Dimension (n = 173) Mean

Parent Involvement 6.3

Structure 5.6

Need/Importance 6.4

Satisfaction 5.3

Effectiveness 5.0

.<< 101

53

We were also interested in how the parents' stress levels and their parental competence was
affected once they started to implement services with their children, and this question was asked
about both the infants and the affected child. The infants' parents reported on a scale of 1 to 7 (7 is
greatly decreased and 4 is no change) that, on average, their stress levels were 4.8, indicating that by
providing services to their infants their stress levels remained unchanged. Parental competence
change score was 5.2, on a similar scale of 1-7 (7 is greatly increased and 4 is no change), indicating
a slight increase in feelings of competence when services were implemented.

When referring to their affected child, parents reported that their stress levels to be 3.9, while
their parental competence was 5.5, on the same scales as described above. This indicates that
although stress levels have stayed more or less the same, providing services to their affected child
somewhat increased their feelings of competence.

Discussion

The results of this study show that parents are providing services to their infants when signs
of autism become evident at an average of 2.3 services per infant. The services that they are
providing are generally non-empirically based. This finding extends the study by Smith and
Anotolovich (2000) who showed the frequent reliance on similar non-empirically validated
treatments with children diagnosed with ASD. This study found similar use of non- validated
interventions not only for affected children, but also their at risk infant siblings. An interesting
finding was that no affected children received only empirically validated treatments; in all cases,
empirically validated treatments were combined with non- validated ones, or only non-validated
treatments were used. Despite the use of non- validated treatments in this study, parents reported that
the services were generally effective, and that they were moderately satisfied and involved in them,
although, based on self-report, parental stress and competence were minimally affected by these
interventions.

]>''. is

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54

An important implication of this study lies with current research that is being done with
evaluating EIBI treatments. This is due to the results of this study that shows that although EIBI is
being used with those children who have been diagnosed with autism, it is not generally used by
itself. This could affect results of the studies evaluating EIBI as these other treatments that are being
used may conflict with EIBI and the effects that EIBI may have on the child.

The results of Study 2 were very interesting, but there are some limitations to keep in mind.
The first is that these were all parent-report measures. There was no independent verification of the
use, nature and effectiveness of the services the parents described to the interviewer. Reports of
intervention effectiveness may reflect the parents' wishful thinking that their child's symptoms
would change with treatment. This was also a limitation in Smith and Antolovich (2000) in which
they state that parental report may have resulted in unreliable information, though there is some
evidence to support parent report by Baranek, Zwaigenbaum, Reznick, Watson, Crais, et al. (2006).
Baranek et al. (2006) showed that parent report and observational measures at 12 months of age are
modestly correlated, lending some important credibility to parent report measures. Another major
limitation to this study is that these families may not be representative of all families in similar
situations. Because of a lack of response to the family information questionnaire, it cannot be
determined how representative they are. Future research should try different methods of completing
the family information questionnaire, perhaps as part of the telephone interview instead of mailing
them out.

There are a few areas that future research should concentrate on, such as replicating the study
with a larger sample size. It would also be important to set up a prevention study with children
genetically at risk for autism. This can be done by identifying at risk infants and starting
interventions with them right away instead of waiting for symptoms to present.

''.L!

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55

Due to the results that arose, it can be seen that parents are implementing many interventions
with their children, though they are generally only minimally satisfied with them. Smith and
Antolovich (2000), indicate that because of the minimal effectiveness of supplemental intervention,
among other reasons, parents and professionals need to be further educated on how to determine if
interventions are scientifically sound. They go on to reconmiend a few ways to do this, including
reporting fmdings in the media of these interventions, rebutting credulous stories, and trying to
influence the policies of funding agencies so that these agencies are not funding treatments that are
not scientifically sound (Smith & Antolovich, 20(X)). Exploring these recommendations from Smith
and Antolovich are imperative to the future of children with autism, as they need to receive the most
effective treatments.

General Discussion

In Study 1, we found support for an initial validation of parent report instruments that can be
used to track early features of ASD in at-risk infants. Such a low-cost instrument is valuable in
identifying children who are beginning to develop ASD so that further assessment could be
conducted and evidence-based intervention can be started as early as possible. Very early
intervention may prevent an autism diagnosis or at least lead to better outcomes than starting after 2
years of age. The POC is a promising instrument that can begin to differentiate children who will be
diagnosed in the future versus those who will not be.

Study 2 examined what interventions parents chose for their at risk infants (who are
beginning to show developmental and/or behavioral problems) and their affected siblings. Parents
reported being moderately involved and satisfied in the services their children are receiving. The
parents also reported that they felt the services were somewhat effective in reducing autistic
symptoms.

JO.;

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56

This study adds to the literature on infants at risk for ASD. We are beginning to design a
valid, low-cost instrument to track autistic symptoms in at risk infants and identify those likely to
eventually be diagnosed with ASD. This finding is important as it may eventually lead to more
children being identified and receiving effective (very) early intervention as soon as possible. For
children who may be developing autism, this preventative or very early intervention can be the
difference between severe disability requiring extraordinary life-long supports versus living their
lives to the fullest.

;i'>

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57

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r.a

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Appendix B 76

INFANT BEHAVIORAL SUMMARIZED EVALUATION (IBSE)

The ISBE Scale is designed to provide a quantitative evaluation of the actual clinical state of autistic
children. Each item is scored from to 4 according to the frequency of appearance:

= Never

1 = Sometimes

2 = Often

3 = Very Often

4 = Continuously

1 . Ignores people

2. Prefers aloneness

3. Poor social interaction

4. No social smile

5. No eye contact

6. Abnormal eye contact

7. Lack of vocal communication

8. Lack of appropriate facial expressions

9. Lack of appropriate gestures and/or expressive postures

10. No or poor imitation of gestures or voice of others

1 1 . Too calm

12. Overly excited

13. Inappropriate use of objects

14. Stereotyped behavior

15. Hypoactivity

16. Hyperactivity

17. Hypotonia

18. Unusual postures

19. Auto-aggressiveness

20. Hetero-aggressiveness

21 . Does not differentiate people

22. No expression of emotions

23. Unmotivated fits of crying and laughing

24. Intolerance to frustration

25. Resistance to change

26. Eating problems

27. Sleeping problems

28. Does not like to be touched

29. Interested only in body contact

30. Unstable attention, easily distracted

31. No reaction to auditory stimuli

32. Bizarre responses to auditory stimuli

3 3. Behavior variability

Adrien, J. L., Barthelemy, C, Perrot, A., Roux, S., Lenoir, P., Hameury, L., & Suavage, D. (1992).
Validity and reliability of the Infant Behavioral Summarized Evaluation (IBSE): A rating scale for
the assessment of young children with autism and developmental disorders. Journal of Autism and
Developmental Disorders, 22 , 375-394.

?

a

T

1 i;
) - 1

U

■J •■»

Appendix C 77

Ages and Stages Questionnaire

Ages 6t S tages Questionnaires: A ParentrCompleted, Child-Nonitoiing System

Second Edition

By Diane Bricker and Jane Squires
with assistance from Linda Mounts, La Wanda Potter, Robert Nickel, Elizabeth Twombty, and Jane Famll

Copyright © 1999 by Paul H. Brookes Publishing Co.

♦ 6 Month *
Ouesttotmaire

Please provide the following information.

Child's name:

Child's date of birth:

Child's corrected date of birth (if child is premature, add weeks of prematurity to child's date of birth):

Today's date:

Person filling out this questionnaire:

What is your relationship to the child?
Your telephone:

Your mailing address:

City:

State: zip code:

List people assisting in questionnaire completion:

Administering program or provider:

MSQ

â– ::r>|-

HG

YES SOMETIMES NOT YET

7^

COMMUNICATIOH Be sure to try each activity with your child.

1 . Does your baby make high-pitched squeals?

2. When playing with sounds, does your baby make grunting,
growling, or other deep-toned sounds?

3. If you call your baby when you are out of sight, does she look in
the direction of your voice?

4. When a loud noise occurs, does your baby turn to see where the
sound canfie from?

5. Does your t>aby make sounds like "da," "ga," "ka," arwj "ba"?

6. If you copy the sounds your baby makes, does your baby repeat
the sounds back to you?

Q

G

â–¡

Q

â–¡

â–¡

â–¡

Q

Q

â–¡

â–¡

a

Q

â–¡

â–¡

â–¡

a

â–¡

COMMUNICATION TOTAL

GROSS MOTOR

Be sure to try each activity with your child.

1 . While on his back, does your baby lift his legs high enough to see
his feet?

2. When she is on her tummy, does your baby straighten both arms
and push her whole chest off the bed or floor?

3. Does your baby roll from his back to his tummy, getting both arms
out from under him?

Q

â–¡

â–¡

a

a

Q

â–¡

a

a

When you put her on the floor, does your t)aby
lean on her hands while sitting? (If she already
sits up straight without leaning on her hands,
check "yes" for this item.)

Q

a

a

5. If you hold both hands just to balance him, does
your baby support his own weight while standing?

â–¡

â–¡

6. Does your baby get into a crawling position
by getting up on her harKJs and knees?

â–¡ â–¡ Q

GROSS MOTOR TOTAL

FIHE MOTOR

Be sure to try each activity with your child.

1 . Does your baby grab a toy you offer and look at it, wave It atxjut,

or chew on it for about 1 minute? LJ

a

V"

- "^3

•. -.-'it

YES SOMETIMES NOT YET

FIME MOTOR

(continued)

2. Does your baby reach for or grasp a toy using both hands
at once?

3. Does your baby reach for a crumb or
Cheerio and touch it with his finger? (If he
already picks up a small object the size
of a pea, check "yes" for this item.)

4. Does your baby pick up a small toy, holding it in the
center of her hands with her fingers around it?

Q

Q

Q

â–¡

5. Does your baby try to pick up a crumb or
Cheerio by using his thumb and all his
fingers in a raking motion, even if he isn't
able to pick it up? (If he already picks up
the crumb or Cheerio, check "Ves" for this
item.)

6. Does your baby usually pick up a small
toy with only one hand?

â–¡

â–¡

a

a a

FINE MOTOR TOTAL

PROBLEM SOLVING Be sure to try each activity with your child.

1 . When a toy is in front of her, does your baby reach for it with
both hands?

2. When he is on his back, does your baby turn his head to look for
a toy when he drops it? (If he already picks it up, check "yes" for
this item.)

3. When she is on her back, does your baby try to get a toy she has
dropped if she can see it?

4. Does your baby often pick up toys and put them
in his mouth?

5. Does your baby pass a toy back and forth
from one hand to the other?

6. Does your baby play by banging a toy up and
down on the floor or table?

â–¡

â–¡
â–¡

a

â–¡
â–¡

â–¡

a

a

â–¡

â–¡
â–¡

â–¡ â–¡ a

PROBLEM SOLVING TOTAL

SI

YES SOMETIMES NOT YET

PERSOH AL-SOCI AL Be sure to try each activity with your child.

1 . When in front of a large mirror, does
your baby smile or coo at herself?

2. Does your baby act differently toward strangers than he does
with you and other familiar people? (Reactions to strangers may
include staring, frowning, withdrawing, or crying.)

While lying on her back, does your baby play
by grabbing her foot?

4. When in front of a large min-or, does your
baby reach out to pat the mirror?

5. While on his back, does your baby
put his foot in his mouth?

6. Does your baby try to get a toy that is out of reach? (She may roll,
pivot on her tummy, or crawl to get it.)

â–¡

â–¡

â–¡

â–¡

â–¡

â–¡

â–¡

â–¡

â–¡

â–¡

â–¡

â–¡

â–¡

â–¡ a â–¡

PERSONAL-SOCIAL TOTAL

OVERALL Parents and providers may use the back of this sheet for additional comments.

1 . Do you think your child hears well?

If no, explain:

2. Does your baby use both hands equally well?

If no, explain:

3. When you help your baby stand, are his feet flat on the surface most of the time?

If no, explain:

4. Does either parent have a family history of childhood deafness or hearing impairment?

If yes, explain:

5. Do you have concerns about your child's vision?

If yes, explain:

6. Has your child had any medical problems in the last several months?

If yes, explain:

7. Does anything about your child wony you?

If yes, explain:

YESQ

NOQ

YESQ

NGQ

YESQ

NOQ

YESQ

NOQ

YESQ

NOQ

YESQ

NOQ

YESQ

NOQ

i V'Qtid

?->!'^ tuq

?2.

6 Month ASQ Information Summary

Child's name:

Date of birth:

Person filling out the ASQ:

Mailing address:

Telephone:

Today's date:

Ck)rrected date of birth:

Relationship to child:

City: State:

Assisting in ASQ completion:

zip:

OVERALL: Please transfer the answers in the Overall section of the questionnaire by circling yes' or "no" ar>d reporting any comnr>ents.

YES NO

1 . Hears well?
Comments:

2. Uses both hands equally well?
Comments:

3. Baby's feet flat on the surface?
Comments:

YES NO

YES NO

4. Family history of hearing impairment? YES NO
Comnr>ents:

5. Vision okay? YES NO
Comments:

6. Recent medical prot)lems? YES NO
Comments:

7. Other concerns? YES NO
Comments:

SCORIPiG THE QUESTIOMNAIRE

1 . Be sure each item has been answered. If an item cannot be answered, refer to the ratio scoring procedure in The ASQ User's Guide.

2. Score each item on the questionnaire by writing the appropriate numt)er on the line by each item answer.

YES = 1 SOMETIMES = 5 NOT YET =

3. Add up the item scores for each area, and record these totals in the space provided for area totals.

4. Indicate the child's total score for each area by filling in the appropriate circle on the chart below. For example, if the total score for
the Communication area was 50, fill in the circle below 50 in the first row.

Total
Communication
Gross motor
Fine motor
Problem solving
Personal-social

Total

Examine the blackened circles for each area in the chart atx)ve.

5. If the child's total score falls within the CZD area, the child appears to be doing well in this area at this time.

6. If the child's total score falls within the ^ area, talk with a professional. The child may need further evaluation.

OPTIOPIAL: The specific answers to each item on the questionnaire can be recorded below on the summary cfiart.

Score Cutoff

Cofnmunicatk)n

Gross motor

Fine motor

Problem solving

Personal-sociai

Communrcation
Gross motor

0)

o Fine motor

E

<o

Problem solving

Personal-social

25.0

25.0

25.0

25.0

25.0

1

O

o

o

2

O

o

o

3

o

o

o

4

o

o

o

5

o

o

o

6

o

o

o

o

o

o

o

o

o

o

o

o

o

o

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Appendix D 83
FAMILY INFORMATION QUESTIONNAIRE

1. Date (month-day- year):

2. Relationship of informant to the child/children in the study:

3. Participant Child's Initials (first, middle, last name): 1) 2)

4. Participant Child's Date of Birth (month-day- year): 1) 2)

PARENT/FAMILY INFORMATION

5. Number of all children and adolescents (up to age 18 yrs) living in the home:

Age: Date of birth (m/d/y):

Age: Date of birth (m/d/y):

Age: Date of birth (m/d/y):

Age: Date of birth (m/d/y):

Age: Date of birth (m/d/y):

6. Number of all adults (19 yrs and over) living in the home:

7. Location of home (nearest city or town):

8. Type of dwelling (Circle ONE):

Apartment Townhouse Boarding home Semi-detached Detached Shelter

9. Do you (Circle ONE)

Own Rent Neither (specify):

10. Present marital status of parents (Circle ONE)

Married Living together Separated Divorced Widowed

1 1 . Total family income before taxes (Circle ONE)

less than $5,000 $5,000-9,999 $10,000-14,999 $15,000-19,999 $20,000-24,999

$25,000-29,999 $30,000-34,999 $35,000-39,999 $40,000-44,999 $45,000-49,999

$50,000-54,999 $55,000-59,999 $60,000-64,999 $65,000-69,999 $70,000-74,999

$75,000-79,999 $80,000-84,999 $85,000-89,999 $90,000-94,999 more than $95,000

INFORMATION ABOUT MOTHER

12. Mother's date-of-birth (month-day- year):

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Appendix D 84

13. How many years did mother spend in high school (secondary school):

14. How many years did mother spend in post-secondary school (college/university):

15. Diploma/degree obtained by mother (Circle all that apply):

None Trade Diploma College University Graduate/Professional

16. Mother had special education experience when in school. (Circle ONE)

No Yes (specify):

17. Current occupation of mother:

18. Mother works (Circle ONE)

Full-time Part-time No

19. hi general, how is mother's health? (Circle ONE)

Excellent Very good Good Fair Poor Don't know

20. Have any of mother's relatives been diagnosed with Autism?

No Yes (specify relationship):

INFORMATION ABOUT FATHER

21. Father's date-of-birth (month-day-year):

22. How many years did father spend in high school (secondary school):

23. How many years did father spend in post-secondary school (college/university):

24. Diploma/degree obtained by father (Circle all that apply):

None Trade Diploma College University Graduate/Professional

25. Father had special education experience when in school. (Circle ONE)

^ ' No Yes (specify):

26. Current occupation of father:

27. Father works (Circle ONE)

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Appendix D 85
Full-time Part-time No

28. In general, how is father's health? (Circle ONE)

Excellent Very good Good Fair Poor Don't know

29. Have any of father's relatives been diagnosed with Autism?

No Yes (specify relationship):

CURRENT SERVICES

30. List all services the family is currently receiving such as preschool, social, health, respite, and
support services. Describe the type of services offered and the reasons for them. It is not
necessary to list them by name:

CHILD 1 INFORMATION

3L Child's date of birth (m/d/y) ; Child's initials

32. Child sex (Circle ONE) Male Female

33. Child' relationship to the family (Circle ONE)

natural child foster child adopted child other (specify): _

34. Child's birth order (Specify number):

35. Child's siblings (Specify numbers of each category; put if none)

younger brothers: older brothers:

younger sisters: older sisters:

36. Is the child a twin? (Circle ONE)

No Yes, fraternal Yes, identical Triplet Quadruplet

37. In general, how is your child's health?

Excellent Very good Good Fair Poor Don't know

38. Child age when a developmental problem was first noticed (if none, write none):

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Appendix D 86

39. Child age when a behavioural problem was first noticed (if none, write none):

40. Child age at first formal diagnosis of disability (if none, write none): months

41. Child's diagnosis (as told to you by a professional; ^ all that apply):

Autistic disorder

Rett's disorder

Childhood Disintegrative disorder

Asperger's disorder

Pervasive Developmental Disorder - Not Otherwise Specified

Down syndrome

Learning disorder Fragile X

Conmiunication disorder Prader-Willi syndrome

Cerebral Palsy Lesch-Nyan syndrome

Spina Bifida Williams syndrome

Epilepsy Fetal Alcohol syndrome

Brain damage

other organic/genetic condition (please specify):

other condition (please specify):

child has no formal diagnosis at this time

42. Child's current level of developmental delay as told to you by a professional
(circle ONE):

No delay Borderline Mild Moderate

Severe Profound No information available at this time

43. Child's current level of developmental delay in your own opinion (circle ONE):

No delay Borderline Mild Moderate

Severe Profound Unknown

44. Child's other problems (^^ all that apply):

hearing problem (please specify):

vision problem (please specify):

movement problem (please specify):

seizures (please specify how many grand mals per month):

chronic ear infections (Are tubes inserted into ears?) Yes No

headaches

eating disorder (please specify):

chronic constipation

chronic diarrhea

).{^

Appendix D 87

asthma

allergies (please specify):

recurrent skin rash

problem with a major organ (please specify): _

frequent colds and flus

attention deficit

hyperactivity

other medical/health problems (please specify):

45. Medications (Please list all medications child is currently taking and their purpose):

PRENATAL AND BIRTH fflSTORY OF CHILD 1

46. Length of pregnancy: full-term: premature? (how many weeks):

47. Duration of Labour : hours

48. Any medical complications during pregnancy? (Circle ONE)

No Yes {Please specify)

49. Any medical complications during birth? (Circle ONE)
No Yes (Please specify)

50. Length of hospitalization: days

5L Birth Weight:

CHILD 2 INFORMATION
(only complete this section if you have another child also in the study)

52. Child's date of birth (m/d/y) ' Child's initials

53. Child sex (Circle ONE) Male Female

54. Child' relationship to the family (Circle ONE)

natural child foster child adopted child other (specify):

55. Child's birth order (Specify number):

56. Child's siblings (Specify numbers of each category; put if none)

■ »- 1.

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Appendix D 88

younger brothers: older brothers:

younger sisters: older sisters: _

57. Is the child a twin? (Circle ONE)

No Yes, fraternal Yes, identical Triplet Quadruplet

58. In general, how is your child's health?

Excellent Very good Good Fair Poor Don't know

59. Child age when a developmental problem was first noticed (if none, write none):

60. Child age when a behavioural problem was first noticed (if none, write none):

61. Child age at first formal diagnosis of disability (if none, write none): months

62. Child's diagnosis (as told to you by a professional; ^ all that apply):

Autistic disorder

Rett's disorder

Childhood Disintegrative disorder

Asperger's disorder

Pervasive Developmental Disorder - Not Otherwise Specified

Down syndrome

Learning disorder Fragile X

Communication disorder Prader-Willi syndrome

Cerebral Palsy Lesch-Nyan syndrome

Spina Bifida Williams syndrome

Epilepsy Fetal Alcohol syndrome

Brain damage

other organic/genetic condition (please specify):

other condition (please specify):

child has no formal diagnosis at this time

63. Child's current level of developmental delay as told to you by a professional

(circle ONE):

No delay Borderline Mild Moderate

Severe Profound No information available at this time

64. Child's current level of developmental delay in your own opinion (circle ONE):

No delay Borderline Mild Moderate

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Appendix D 89

Severe Profound Unknown

65. Child's other problems (^ all that apply):

hearing problem (please specify):

vision problem (please specify):

movement problem (please specify):

seizures (please specify how many grand mals per month):

chronic ear infections (Are tubes inserted into ears?) Yes No
headaches

eating disorder (please specify):

chronic constipation
chronic diarrhea
asthma

allergies (please specify):

recurrent skin rash

problem with a major organ (please specify):

frequent colds and flus

attention deficit

hyperactivity

other medical/health problems (please specify):

66. Medications (Please list all medications child is currently taking and their purpose):

PRENATAL AND BIRTH fflSTORY OF CHILD 2

67. Length of pregnancy: full-term: premature? (how many weeks):

68. Duration of Labour : hours

69. Any medical complications during pregnancy? (Circle ONE)

No Yes (Please specify)

70. Any medical complications during birth? (Circle ONE)
No Yes (Please specify)

7L Length of hospitalization: days

72. Birth Weight:

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