Two Year Outcomes of Autism Early Intervention in BC

1. 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

2. 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)

3. 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

4. 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

5. 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

6. 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.

7. 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)

8. Participants by Region

9. Who Were the Children?

10. 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

11. Who Were the Families?

12. Treatment Provided  Pat Mirenda, Ph.D., 2005

13. 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

14. Average Hours of Treatment Over 2 Years

15. 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

16. Outcomes over 2 Years (T1-T4) T1 average age = 4:2 T4 average age = 6:1  Pat Mirenda, Ph.D., 2005

17. 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

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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:

24. 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)

25. 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

26. Test Results • The next slides present the test results over 2 years for all 70 children

27. 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

28. 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

29. 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

30. 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

31. 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

32. 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

33. 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

34. 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

35. 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

36. 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

37. 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

38. 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

39. 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

40. 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

41. 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

42. 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)

43. Results: Support • Over 2 years, children required significantly less support for personal hygiene and community activities (e.g., toileting, dressing, washing hands, brushing teeth)

44. 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

45. 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.)

46. 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

47. 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

48. 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”)

49. 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

50. 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)