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Two Year Outcomes of Autism Early Intervention in BC. January, 2005 Pat Mirenda, Ph.D., Project Director Veronica Smith, Anat Zaidman-Zait, Paula Kavanagh, and Karen Bopp, Research Assistants Bruno Zumbo, Ph.D., Statistical Consultant The University of British Columbia.

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two year outcomes of autism early intervention in bc

Two Year Outcomes of Autism Early Intervention in BC

January, 2005

Pat Mirenda, Ph.D., Project Director

Veronica Smith, Anat Zaidman-Zait, Paula Kavanagh, and Karen Bopp, Research Assistants

Bruno Zumbo, Ph.D., Statistical Consultant

The University of British Columbia

what is early intensive behavioral intervention in bc
What is Early Intensive Behavioral Intervention in BC?
  • Early intensive behavioral intervention (EIBI) was implemented in May, 2001
  • There are three EIBI sites:
    • Delta Association for Child Development
    • Queen Alexandra Centre for Children (Victoria)
    • Thompson Okanagan Autism Project (TOAP) (child development centres in Penticton, Kelowna, Vernon, Kamloops)
what services do eibi programs provide
What Services Do EIBI Programs Provide?
  • EIBI consists of
    • Year-round, at least 20 hours/week of 1:1 intervention
    • Highly structured teaching, based on applied behavior analysis (ABA) principles
    • Integrated therapies (SLP, OT, etc.)
    • Component of integration with typical peers
    • Positive behavioural support for problem behaviour
    • Family involvement in training and intervention
  • Each EIBI sites is funded to provide services to a minimum of 25 children and families at any time
what is interim early intensive intervention in bc
What is Interim Early Intensive Intervention in BC?
  • The Interim Early Intensive Intervention (IEII) funding model (also known as Individualized Funding) was implemented in June, 2002 for all BC children with autism spectrum disorders, ages 0-6
  • Families receive up to $20,000 per year to purchase services for their children from a list of “Qualified Service Providers”
    • Behaviour consultants and interventionists
    • Speech-language pathologists
    • Occupational and physiotherapists
the evaluation project
The Evaluation Project
  • The evaluation project was initiated at the very beginning of the EIBI and IEII programs.
  • So, the results only apply to the children and families who were initially involved in these programs, which have developed considerably since the evaluation was completed
  • Results may be different if the evaluation was conducted today
overview of the evaluation
Overview of the Evaluation
  • The evaluation project was approved by UBC’s Behavioral Ethics Review Board
  • All EIBI and IEII families were invited but not required to participate in the project
    • 50% of EIBI children/families who gave consent in each site were selected at random for the evaluation. The total number of EIBI families in the project was 39.
    • All IEII families who consented to participate and whose children were eligible to receive at least one year of IEII funding were also included. The total number of EIBI families in the project was 31.
evaluators
Evaluators
  • Evaluators assessed each family and child at the EIBI site office or at home
  • Multidisciplinary team of evaluators
    • Psychologist (same person each time)
    • Speech-language pathologist (SLP) (same person each time)
    • Family interviewer (different evaluators each time)
  • Psychologist, SLP each spent several hours with each child, often on separate days
  • Family interviewers spent several hours with family member(s)
  • Children and families were assessed before intervention started (T1), 6 months later (T2), 1 yr later (T3), and 2 yrs later (T4)
children con t
Children (Con’t)
  • Before intervention started
    • 61% of EIBI children and 97% of IEII children were in preschool or day care
    • Most children both groups had received small amounts of intervention from infant development consultants, speech-language pathologists, occupational therapists, or other professionals
    • Four EIBI and three IEII children had received ABA therapy; three received more than 900 hours, while the others received fewer hours
treatment provided

Treatment Provided

 Pat Mirenda, Ph.D., 2005

treatment services received
Treatment Services Received
  • As part of their intervention, all EIBI and almost all IEII children received
    • At least some structured ABA teaching or behavior support services
    • Either direct or consultative speech-language and occupational therapy
  • Some EIBI and IEII children received various recreation therapies
  • All but two children attended day care, preschool, or school as well
was there a relationship between child progress and hours of treatment
Was There a Relationship Between Child Progress and Hours of Treatment?
  • Using statistical tests, we found no significant relationship between child progress on any measure and either
    • Total hours of treatment without school or
    • Total hours of treatment including school
  • This means that factors other than hours of treatment were better predictors of child outcomes
outcomes over 2 years t1 t4

Outcomes over 2 Years (T1-T4)

T1 average age = 4:2

T4 average age = 6:1

 Pat Mirenda, Ph.D., 2005

understanding the results
Understanding the Results….
  • Sometimes, test scores can change just because a child has “good day” or a “bad day” when he/she is tested -- but the difference is not really meaningful or important -- it could have occurred “by chance”
  • We used a number of statistical tests to determine whether children made more progress over 2 years they would have made just by chance
  • We use the term “significant” in this presentation to indicate that there is a 5% or less likelihood that a change occurred by chance, and code this in green
  • We use the term “not significant” to indicate that the result could have occurred by chance, and code this in red
understanding the results18
Understanding the Results….
  • First, growth curve analyses were done
    • To determine whether the rate of change over 2 yrs of treatment was greater than expected by chance (i.e., “significantly different”) and
    • To obtain estimates of the children’s rate of progress on various measures prior to intervention
  • Then, the data were analyzed to examine specific predictors of progress over 2 yrs
were there differences in progress between the eibi and ieii groups
Were There Differences In Progress Between the EIBI and IEII Groups?
  • There no significant differences between the two service delivery groups on any measure
    • On average, the EIBI and IEII children made similar progress over 2 years
    • So, we combined the two groups into one group of 70 children to answer the rest of the questions
were there differences in progress between children with autism and pdd nos
Were There Differences in Progress Between Children with Autism and PDD-NOS?
  • There were no significant differences between the two diagnostic groups on any measure
    • Children with autism and children with PDD-NOS (pervasive developmental disorder-not otherwise specified) made similar progress
    • So, we analyzed the results across both children with autism and those with PDD-NOS to answer the rest of the questions
was more progress made by children who were younger at t1
Was More Progress Made by Children Who Were Younger at T1?
  • There were no significant differences between children who started treatment younger and those who started when they were older on any measure
    • Children who started when they were older made as much progress as children who started when they were younger
    • But remember: At T1, EIBI children were 46 months old, on average (range = 21-68 mo) and IEII children were 55 months old, on average (range = 28-72 mo), at T1 -- that is, no children were older than age 6 at T1
were there differences for children who were testable vs untestable
Were There Differences for Children Who Were “Testable” vs. “Untestable”?
  • “Untestability” was determined on a test-by-test basis, using different criteria for each measure
  • Children were considered to be untestable if they met the criterion established for each test at both T1 and T2
  • Significant differences were found between testable and untestable children on several measures
    • In other words, children who could not achieve at least a minimum test score on these tests both before they began treatment as well as 6 months later made less progress over 2 years, compared to children who could be tested successfully
  • So, the results for testable and untestable children will be presented separately in the slides that follow
reading the graphs
Reading the Graphs
  • We used growth curve analysis to find out whether the children’s scores on various tests changed significantly over the 2 yrs
  • We charted the results using graphs that look like this:
what do the graphs mean
What Do the Graphs Mean?
  • Each grey line is one child
  • These are the child’s test score
  • These are when the child was tested
    • 0 = before intervention (T1)
    • 6 months later (T2)
    • 12 months later (T3)
    • 24 months later (T4)
what do the graphs mean25
What Do the Graphs Mean?
  • The red line is the average test score across all 70 children
  • So, in this graph, the average score increased from 60 to just over 80 between T1 and 2 years later
test results
Test Results
  • The next slides present the test results over 2 years for all 70 children
autism severity and symptoms cars and abc
Autism “Severity” and Symptoms: CARS and ABC
  • CARS: Childhood Autism Rating Scale
    • Administered by psychologist
    • Based on observation of child and family interview
    • Provides descriptions of symptoms and “severity” rating
  • ABC: Autism Behavior Checklist
    • Administered by family interviewer
    • Based on parent report of behaviors
slide28
On the CARS, low scores = less severe autism

Average score at baseline: 35.9

Average score at 2 yrs: 34.2

This is not a meaningful decrease in autism severity, as observed by the psychologist

CARS
slide29
On the ABC, low scores = fewer autistic behaviors

Average score at baseline: 61

Average score at 2 yrs: 41

This is a significant decrease in autistic behaviors, as reported by parents

ABC
temperament and atypical behavior scale tabs
Temperament and Atypical Behavior Scale (TABS)
  • Administered by family interviewer, based on parent report
  • Provides subscale scores related to four clusters of atypical behaviors
    • Detached: behaviors related to being “in his/her own world”
    • Hypersensitive: easily frustrated, tantrums, aggressive, impulsive
    • Underreactive: socially unresponsive
    • Dysregulated: sleep problems, difficult to comfort
tabs standard scores

Typical

At risk

Atypical

TABS Standard Scores
  • On the TABS, high scores = fewer unusual behaviors
  • On average, the children’s lowest scores were on the “detached” subscale and remained “atypical” after 2 years of intervention
  • Scores for the other subscales improved somewhat, but the children were still in the TABS “at risk” category
iq testable children
These are standard scores, not raw scores

Typical children’s standard scores tend to be stable over time

Testable children

Started with a mean score of 60

Ended with a mean score of 83.7 at T4 (+23.7 pts)

This is significant

IQ: Testable Children
iq untestable children
Untestable children

Started with a mean score of 45.8

Ended with a mean score of 49.7 at T4 (+3.9 pts)

This is significant, even though it is a small increase

IQ: Untestable Children
one more lesson
One More Lesson!
  • To read the next set of graphs, you need to know what this dotted red line means
  • This is a statistical estimate of what the average child’s test score would have been without intervention
  • In general, the bigger the gap between the solid and the dotted red lines, the greater the impact of the intervention
adaptive behavior vabs
Adaptive Behavior: VABS
  • VABS: Vineland Adaptive Behavior Scales
    • Administered by psychologist
    • Based on parent interview
    • Provides total score and subscale scores in four areas:
      • Communication
      • Daily living skills
      • Socialization
      • Motor skills
vabs communication
Typical children (ages 0-8) gain approx. 1.15 raw score points per month (ppm) on this subscale

EIBI and IEII children gained, on average

.7 ppm prior to intervention

1.07 ppm during intervention

This is a significant gain of +7 months more than would have occurred without intervention

31% of the change was due to treatment; 69% was due to maturation

VABS: Communication
vabs socialization
Typical children (ages 0-8) gain approximately 1.0 raw score ppm on this subscale

EIBI and IEII children gained, on average

.72 ppm prior to intervention

.74 ppm during intervention

This is not a significant gain compared to what would have occurred without intervention

4% of the change was due to treatment; 96% was due to maturation

VABS: Socialization
vabs motor skills
Typical children (ages 0-6) gain approximately 1.0 raw score ppm

EIBI and IEII children gained, on average

.87 ppm prior to intervention

.74 ppm during intervention

This is not a significant gain compared to what would have occurred without intervention; in fact, it is a slight decrease in gain

VABS: Motor Skills
vabs daily living skills
Typical children (ages 0-8) gain approximately 1.35 raw score ppm

EIBI and IEII children gained, on average

.7 ppm prior to intervention

1.15 ppm during intervention

This is a significant gain of +6 months more than would have occurred without intervention

46% of the change was due to treatment; 54% was due to maturation

VABS: Daily Living Skills
preschool lifestyle inventory
Preschool Lifestyle Inventory
  • The PLI measures the number of different leisure and personal management activities done by the child across nine areas in the past 30 days, by parent report
  • Also measures the amount of support required by the child in activities (1 = no support; independent, 4 = substantial support), by parent report
results leisure activities
Results: Leisure Activities
  • Children were engaged in significantly more
    • Play activities (e.g., puzzles, drawing, lego, play-dough, doll play, looking at books, board games)
    • Exercise activities (e.g., riding a tricycle, going on swings/slides, skating, throwing a ball)
    • Media activities (e.g., using a computer, watching TV/videos
    • Community activities (e.g., going to the park, movies, swimming, church, parties)
    • Other leisure activities identified by the parent
results daily living skills
Results: Daily Living Skills
  • Children were also engaged in significantly more
    • Food-related activities (e.g., using spoon/fork, ordering food in restaurant, making a snack)
    • Space and belongings activities (e.g., putting away toys, setting the table, pet care)
    • Personal hygiene and community activities (e.g., toileting, dressing, using a schedule)
results support
Results: Support
  • Over 2 years, children required significantly less support for personal hygiene and community activities (e.g., toileting, dressing, washing hands, brushing teeth)
social network analysis form snaf
Social Network Analysis Form (SNAF)
  • Measures the number of socially important people in the child’s life within the past 30 days, by parent report
    • Family members
    • Preschool/daycare/school contacts
    • Friends
    • Neighbours
    • Paid staff
    • Other
social network results
Social Network Results
  • Significant increases were found in the number of children’s
    • Preschool/school peers
    • Friends
    • Paid staff
  • No significant differences were found in other areas (e.g., number of family members, neighbours, etc.)
receptive language tests
Receptive Language Tests
  • PLS-AC: Preschool Language Scale-3
    • Administered by speech-language pathologist (SLP)
    • Provides receptive language subscale score (global language comprehension)
  • PPVT: Peabody Picture Vocabulary Test (IIIA and IIIB)
    • Administered by SLP
    • Measures single word vocabulary comprehension
pls ac testable children
Typical children (ages 0-8) gain approximately 0.6 raw score ppm

Testable children gained, on average

0.4 ppm prior to intervention

.75 ppm during intervention

This is a significant gain of +12 months more than would have occurred without intervention

39% of the change was due to treatment; 61% was due to maturation

PLS-AC: Testable Children
what does this mean
What Does This Mean?
  • For these children, skills gained as a result of the change in rate of progress include the ability to understand
    • Advanced spatial concepts (e.g., under, in back of)
    • Advanced descriptors (e.g., long ,short)
    • Time concepts (e.g., day versus night)
    • Advanced quantities (e.g., “Which one has five…?”)
    • Complex directions (e.g., “Give me the small red ball in the box”)
    • Passive voice (e.g.,”The boy was chased by the dog”)
pls ac untestable children
Typical children (ages 0-8) gain approx. 0.6 raw score ppm

Untestable children gained, on average

0.2 ppm prior to intervention

0.5 ppm during intervention

This is a significant gain of +12 months more than would have occurred without intervention

67% of the change was due to treatment; 33% was due to maturation

PLS-AC: Untestable Children
what does this mean50
What Does This Mean?
  • For these children, skills gained as a result of the change in rate of progress include the ability to identify
    • Pictures
    • Body parts (e.g., hair, mouth, eye, nose, etc.)
    • Action words (e.g., eat, sleep, drink, play, wash)
    • Basic spatial concepts (e.g., in, off, out of)
    • Pronouns (e.g., me, my, him)
    • Early quantity concepts (e.g., some, the rest of)
    • Functional object use (e.g., scissors are used for cutting paper)
    • Basic descriptors (e.g., big, little, wet)
ppvt testable children
Typical children (ages 0-8) gain approx. 1.1 raw score ppm

Testable children gained, on average

0.4 ppm prior to intervention

1.6 ppm during intervention

This is a significant gain of +27 months more than would have occurred without intervention

77% of the change was due to treatment; 23% was due to maturation

PPVT: Testable Children
ppvt untestable children
Typical children gain approximately 1.1 raw score ppm

Untestable children gained, on average

0 ppm prior to intervention

.4 ppm during intervention

This is a significant gain of +20 months more than would have occurred without intervention

Unable to estimate the amount of change due to treatment because of very low T1 scores

PPVT: Untestable Children
expressive language tests
Expressive Language Tests
  • PLS-EC: Preschool Language Scale
    • Administered by SLP
    • Measures global expressive language
  • EOWPVT: Expressive One-Word Picture Vocabulary Test
    • Administered by SLP
    • Measures single word vocabulary output
  • MacArthur Words & Gestures, Words & Sentences
    • Administered by family interviewers
    • Measures parent report of # of words child understand and says, from a list of 680 words
pls ec
Typical children gain approx. 0.6 raw score ppm

Both testable and untestable children gained, on average

0.3 ppm prior to intervention

0.5 ppm during intervention

This is a significant gain of +6 months more than would have occurred without intervention

39% of the change was due to treatment; 61% was due to maturation

PLS-EC
what does this mean55
What Does This Mean?
  • For the “average” child, skills gained as a result of the change in rate of progress include the ability to
    • Use possessives (e.g., The boy’s cat)
    • Tell how an object is used in a short sentence (e.g., “I use a spoon to eat”)
    • Answer questions logically (e.g., “What do you do when you’re sleepy?” “I go to bed”)
    • Use pronouns such as I, she, we, they
eowpvt testable children
Typical children gain approximately 1.0 raw score ppm

Testable children gained, on average

0.4 ppm prior to intervention

1.4 ppm during intervention

This is a significant gain of +25 months more than would have occurred without intervention

71% of the change was due to treatment; 29% was due to maturation

EOWPVT: Testable Children
eowpvt untestable children
Typical children gain approx. 1.0 raw score ppm

Untestable children gained, on average

0 ppm prior to intervention

.2 ppm during intervention

This is a significant gain of +15 months more than would have occurred without intervention

Unable to estimate the amount of change due to treatment because of very low T1 scores

EOWPVT: Untestable Children
mcdi words said
MCDI: Words Said
  • Approximately one-third (34.3%) of the children could say only 1-49 words on the MCDI at T1, compared to only 12% at T4
  • Only 4.3% of the children could say 650 words or more on the MCDI at T1, compared to almost one-third (32.7%) at T4
mcdi words said59
MCDI: Words Said
  • The children’s average number of words on the MCDI increased from 164 at T1 to 424 at T4 -- a 260% increase
what predicted change
What Predicted Change?
  • We used statistical tests to determine whether any T1 variables or measures were good predictors of how much change would occur in individual children over the 2 years
  • In other words, was it possible to predict before intervention which children would benefit the most and, if so -- how?
predictors
Predictors
  • None of the following were good predictors of change over 2 years:
    • Type of service (EIBI vs. IEII)
    • Diagnosis (autism vs. PDD-NOS)
    • Age at baseline
    • Total hours of treatment, either with or without school/ preschool/daycare
  • Combinations of the following were goodpredictors of child change on some measures, over 2 years:
    • “Testability” at T1 and T2 but not at T1 alone
    • T1 CARS scores (less severe autism predicted more progress)
    • T1 IQ scores (higher IQ scores predicted more progress)
    • T1 number of words said on the MCDI (more words predicted more progress)
  • There may be other (and better) predictors as well that were not examined in this analysis
parenting stress psi sf
Parenting Stress: PSI-SF
  • PSI: Parenting Stress Inventory-Short Form
    • Administered by family interviewer
    • Based on parent report
  • Provides total parenting stress score and subscale scores in four areas
parenting stress psi sf63
Parenting Stress: PSI-SF
  • PSI: Parenting Stress Inventory-Short Form
    • Administered by family interviewer
    • Based on parent report
    • Measures total parenting stress -- that is, stress related to parenting (in this case) the child with autism, not stress caused by other factors (e.g., marital problems, family illness, financial difficulties, etc.)
    • Scores of 90 or above are considered problematic (see blue line on next slide)
psi sf
PSI-SF
  • Average score at baseline: 96.6
    • 90 or more: 64% of families
  • Average score at 2 yrs: 82.6
    • 90 or more: 34% of families
  • This is a significant decrease but is still worrisome for the 34% of families with scores above 90
what child factors predicted psi scores
What Child Factors Predicted PSI Scores?
  • We used statistical tests to determine if specific child factors were associated with (i.e., predicted) changes in PSI scores over the 2 years
    • We examined all of the test results (IQ, expressive and receptive language, daily living skills, problem behavior, etc.)
  • The only significant predictors were changes in problem behavior scores on the TABS and changes in autistic behavior scores on the ABC -- together, these accounted for 77% of the PSI score change
  • This suggests that reduced problem behavior is the factor most related to reduced parenting stress and should be a high priority for direct intervention from the outset of treatment
parent perceptions and satisfaction

Parent Perceptions and Satisfaction

 Pat Mirenda, Ph.D., 2005

parent satisfaction psq
Parent Satisfaction: PSQ
  • PSQ: Parent Satisfaction Questionnaire
    • Adapted from an instrument used in Lovaas (ABA) research sites
    • Administered by the family interviewer
    • Measures parents’ perceptions of child change in several areas and satisfaction with the EIBI or IEII programs as whole
  • Completed at each evaluation point; here, we summarize only the results at 32 mo (T5) for EIBI families and 24 mo (T4) for IEII families
parent perceptions of child change
Parent Perceptions of Child Change
  • Parents were asked if they noticed improvements in their child’s
    • Language and communication skills
    • Social skills
    • Play and leisure skills
    • Aggression and tantrums
    • Self-stimulatory and ritualistic behaviour
    • Self-help skills
parent perceptions of child change69
Parent Perceptions of Child Change
  • Parents rated the amount of change in each area from 1-7:
    • 1 = this is no longer a problem for my child
    • 2 = significantly improved
    • 3 = slightly improved
    • 4 = no change
    • 5 = slightly worse
    • 6 = significantly worse
    • 7 = much worse
parent satisfaction
Parent Satisfaction
  • Parents were also asked to rate their satisfaction in a number of areas
  • In general, the rating scale was
    • 1 = very negative
    • 2 or 3 = somewhat or slightly negative
    • 4 = neutral or “just right”
    • 5 or 6 = somewhat or mostly positive
    • 7 = very positive
how do you feel about

1 = very dissatisfied; 7 = very satisfied

How Do You Feel About…

…the treatment methods used with your child?

how has treatment affected78

1 = greatly decreased; 7 = greatly increased

How Has Treatment Affected…

…your confidence and hopefulness for your child’s future?

summary
Summary
  • Over 2 years, children receiving EIBI and IEII made more progress per month than they are likely to have made without treatment, on almost every measure
  • On average, both EIBI and IEII parents saw significant improvements over 2-3 yrs in their children, and were very satisfied with the services they received
many thanks to
Psychologists

Ron Buen

Kathryn Cass

Julie Conry

Linda Eaves

Peggy Koopman

Karl Mueller

Tara Tunstall

Edith van de Watering

Speech-language pathologists

Barbara Cotter

Marta Eveson

Betsy Niely

Mary McKenna

Shannon Muir

Liz Payne

Lisa Prokopowitz

Pat Savinkoff

Veronica Smith

Rhoda Zacker

Many Thanks to…
many thanks to85
Additional UBC research assistants

Karen Ott VandeKamp

Kim Hurd

Robyn Teske

Project assistant Jackie Brown

And, most of all, all the families and children who participated!

Family interviewers

Kirsten Turoldo

Lynn Edwards

Brenda Fossett

Kim Hurd

Margaret Gauthier

Jane Kelty

Liana Maione

Karen Ott vandeKamp

Laurie Reid

Tawnya Schulz

Robyn Teske

Sandra Waddle

Krista Zambolin

Many Thanks to…
the end

The End

 Pat Mirenda, Ph.D., 2005