1. Improving Diagnosis and Treatment in School-Age Children: Perspectives from Clinical Settings to Classroom Observations
March 17, 2018
Thomas Frazier, PhD, Autism Speaks Chief Science Officer

2. Outline
Accurate diagnosis leads to more effective early and school-age intervention
Role of objective measures
Early characteristics and intervention trajectories predict school-age placement
4 school placement models
Managing challenging behavior in school-age children

3. Major Advances in Diagnosis and Intervention
National Average Age of Diagnosis ~4 years old
Many children identified by years
Early developmental and behavioral interventions work!
ABA, PRT, ESDM, etc.
Parent training appears very helpful
Increasing reimbursement
Schools becoming more educated and capable of meeting the needs of children with autism

4. Remaining problems and questions
Diagnosis could still be earlier and more accurate
Many parents have difficulty accepting diagnosis, particularly in cognitively-able children
Still difficulty with access to early intervention
How do we predict benefit from early intervention?
How do we most effectively tailor early intervention?
How do we identify appropriate school age placements
How can we more effectively track intervention benefit?

5. Accurate Screening and Diagnosis

6. Objective measures of autism
Improve parental acceptance
Increase accuracy of screening and diagnosis
Need to be scalable / feasible, even in young and very affected people
Need to be accurate / useful, even in very cognitively-able people
Many researchers examining potential solutions
MRI, EEG/ERP, eye tracking, natural language processing, video coding

7. Remote eye gaze tracking
Eye tracking measures may be useful measures of ASD risk and autism symptom levels
Quantitative
Objective
Easy to collect (92% valid evaluation first time)
Relatively inexpensive (~$200 eye trackers available)
Use cases
Screening
Diagnosis
Treatment Tracking
Prognosis

8. Remote Eye Tracking Setup
92% of youth referred for evaluation completed the eye tracking assessment on the first attempt

9. Stimulus Paradigms

10. Social and Non-Social Regions-of-Interest (ROI)

11. Temporal Regions-of-Interest (ROI)

12. Differences are most apparent in scanning

13. Good Accuracy for ASD Diagnosis and Correlation with Autism Symptom Levels
Test Sub-sample
Area Under the ROC curve=.860
Correlations with ADOS-2 total remains strong r=.41

14. Other Uses Treatment tracking Prognosis
Collecting data on sensitivity to change and test-retest reliability
Prognosis
Important for tailoring intervention
Receptive language and non- verbal ability are important predictors of outcome

15. Early Characteristics and Intervention Trajectories Predict School-Age Placement

16. Wide Variation in Child Characteristics
Language and Communication
~30% remain non-verbal or minimally verbal
Non-verbal and language abilities
Severe intellectual disability to very superior ability
Other cognitive functions
Attention
Executive function
Social motivation / interest
Perspective taking
Restricted / repetitive behavior
Naive to think these don’t predict outcomes

17. Non-Verbal Ability Predicts Treatment Response

18. Behavioral Trajectories Predict PRT Response
Responders had more interest in toys, tolerant of another person in close proximity, low rates of non-verbal self-stimulatory behavior

19. Cleveland Clinic - Early ABA Intervention Outcomes
Overall
≤36 months at entry
>36 months at entry N 63 24 39
No support (%)
23.8%
41.7%
12.8%
Minimal support (%)
20.6%
8.3%
28.2%
Significant non-IBI support (%)
14.3%
12.5%
15.4%
IBI support (%)
41.3%
37.5%
43.6%
44.4%
55.6%

20. Baseline and 6-month changes in language scores differ strongly between minimal and significant support groups
Baseline and 6-month change in language scores provided very strong prediction of two basic outcomes (>95% accuracy)

21. Summary of Predictors of Positive Outcome from Early Intervention
Formal testing
Objective measures can speed up intervention tailoring
Higher IQ, non-verbal ability, language
Better communication skills
Lower non-verbal self-stimulatory behavior
Less repetitive sensory motor behavior
Better attention and executive function
Higher social motivation
Greater interest in toys
Greater tolerance of people in the immediate vicinity
Higher parent engagement in intervention

22. 4 School Placement Models

23. Mainstream Typical Profile
above average cognitive abilities
only mild pragmatic language/speech difficulties
no challenging behavior
no other significant co-occurring conditions
adequate to good attention
minimal to no executive function impairments
social motivation is intact
Mild difficulties with perspective taking
Sometimes called optimal outcome OR very mild residual symptoms

24. Interventions and Supports
No or very minimal school supports
Need social skills / social cognitive intervention
15-20 training sessions
Help to understand expected social interaction, handle conflict, set social goals
Develop social language and help child adopt as tool for success
Parent and teacher training
Generalization is key
Summer camp settings, play dates, etc.
Often benefit from 2-3 years of intervention

25. Social Difficulties Decrease During Training and Even Further During Generalization

26. Social Improvements are Maintained Over Time

27. Minimal Support Profile
Typical Profile
average cognitive ability
mild to moderate pragmatic language/speech difficulties
Very little, if any, challenging behavior
any other co-occurring conditions are mild (e.g. mild ADHD, anxiety)
adequate attention
minimal executive function impairments
social motivation is intact
mild to moderate difficulties with perspective taking

28. Interventions and Supports
School supports tend to be provided within typical classroom or via infrequent pull-out
IEP with academic and social (possibly behavioral goals)
OT, Speech
Classroom behavioral intervention (teacher is key)
Private school with special emphasis on high functioning ASD and related conditions
Need similar social skills / social cognitive intervention
Child, parent, and teacher training
More effective if directly embedded within classroom setting
Longer duration / ongoing through childhood and early adolescence
Strong focus on generalization
Size of the problem
Compromise

29. Moderate Support (non-IBI)
Typical Profile
mild impairment to below cognitive ability
significant pragmatic language/speech difficulties
mild communication challenges
challenging behavior often present
often one or more co-occurring conditions (e.g. moderate ADHD + anxiety)
problems with sustained attention
mild to moderate executive function impairments
social motivation is variable
substantial difficulties with perspective taking
significant and interfering repetitive behavior

30. Interventions and Supports
Autism or other special education classroom
Minimal exposure to typical curriculum
Aide support required
IEP with academic, behavioral, social, and functional goals
OT, Speech, PT are common
May be private placement with autism focus
Often need functional behavioral assessment and plan
Ongoing psychiatric and/or other medical support
Intervention tends to focus on functional skills
Daily living skills
Essential components of social interactions
Improving communication skills, especially in stressful moments
Pre-vocational skills

31. Significant Support Typical Profile
moderate to severe impairments in cognitive ability
non-verbal / minimally verbal or with significant language/communication impairments
challenging behavior almost always present to some degree
often multiple co-occurring medical and/or mental health conditions
severe problems with sustained attention
significant executive function impairments
social motivation often low or inappropriately high
very limited perspective taking
significant and interfering repetitive behavior

32. Interventions and Supports
Intensive behavioral intervention
functional behavioral assessment and behavior plan
integrated psychiatric and other medical care
focus on functional skill development
Pre-vocational activities start by age 12, if not sooner
Parent training in behavior and crisis management
sibling training
Additional community supports
respite care
Regular physical exercise often helpful in many cases
Especially if antipsychotic use

33. Why is this important?
Very challenging for parents and professionals to identify “optimal placement”
Information challenge
Emotional challenge
Getting appropriate support facilitates faster development
Example 1 – need social not academic
Always shooting for mainstream can be counter-productive
Example 2 – frustrated, social improvements inhibited
Value of functional programming
Setting up long-term success in vocational or independent/semi-independent living environments

34. Addressing challenging behavior

35. Challenging behavior is common
45-48% of children with autism had some problem behavior
- Tends to emerge or worsen in school-age youth
8-13% had severe behavior disturbance
- Aggression 9-15%
- Property destruction 11%
- Self-injury 10-11%

36. Significant consequences of challenging behavior

37. Challenging behavior inhibits skill development
Even within an intensive behavioral intervention program, with formal behavioral assessment and treatment processes, challenging behavior can decrease success

38. Example comprehensive, multi-disciplinary assessment process

39. Appropriate functional assessment and treatment can be effective

40. Antipsychotic treatment improves challenging behavior treatment

41. Summary – Take Home Messages
Objective measures can improve the accuracy and acceptability of autism screening and diagnosis
Eye tracking, wearables, EEG / ERP, natural language, behavioral coding are all near-term possibilities
Can also improve tailoring of intervention and treatment tracking
Early child characteristics, particularly non-verbal and receptive language abilities, can be used to tailor and predict early intervention outcomes and guide school-age placement

42. Summary cont.
School-age interventions and supports must match the individual’s needs
Finding what fits speeds improvement and increases functioning
Addressing challenging behavior is critical to maximizing outcome and realizing potential
Functional assessment guides treatment
Multi-disciplinary approach is often needed

43. Thanks! Questions?