The document presents findings from evaluations of children undergoing assessments for developmental disorders across five counties, highlighting satisfaction from families regarding the evaluation process and tools used. It includes data on demographics, diagnoses, and perceptions of families and professionals involved, emphasizing the effectiveness of psychoeducational tools and medical evaluations. Insights from family surveys indicate varying levels of satisfaction and concerns regarding discrepancies in diagnoses, with several families expressing gratitude for the support received throughout the evaluations.

1. Four of the five counties are now underway Fifth county is re-grouping What do we know about the children, families and professionals who have been through the process? Results from the enhanced evaluation Psychoeducational tools, medical eval & diagnosis Perceptions of families Post-evaluation surveys Perceptions of the diagnostic partners Time, usefulness of tools, confidence in diagnosis We are not a research study: Some data holes!

2. Number of children evaluated 23 Gender 15 M 8 F Chronological age Range 17-91 months Under 36 months 10 37-48 months 6 49-60 months 5 > 60 months 2

3. Diagnoses Number % Autism 6 26% PDD-NOS 3 13% Aspergers 1 4% TOTAL ASD 10 43% Language Delay/Disorder 6 26% Language + Behavior 3 13% Global Delay 3 13% No Clinical Dx 1 4%

4. Diagnosis x Age Age ASD Other Under 36 months 5 5 37-48 months 1 5 49-60 months 3 2 > 60 months 1 1

5. RBI priorities Toileting and dressing Feeding/mealtime Playtime: entertaining self FQOL: Not as “sensitive” as RBI Only 6 families scored any item as “Dissatisfied” Outside family support, free time, medical/dental care

6. Two surveys: Family-Centered Practices Scale following the psychoeducational evaluation Satisfaction Survey following the medical evaluation/diagnosis Responses from 17 of the 23 families

7. *Adapted with permission from Family-Centered Practices Scale , Dunst & Trivette, 2004 With one exception, Never Very Little Some of the time Most of the time All of the time Really listened to my concerns/requests 1 2 3 4 5 Treated me with dignity and respect 1 2 3 4 5 Saw us in a positive way 1 2 3 4 5 Were sensitive to our cultural/ethnic background 1 2 3 4 5 Understood our situation 1 2 3 4 5 Listened for our strengths and interests 1 2 3 4 5 Helped me learn more about my child’s development 1 2 3 4 5 Helped me be an active part of the eval 1 2 3 4 5 Recognized the good things I do as parent 1 2 3 4 5 Were flexible and responsive 1 2 3 4 5 Helped me figure out what to do next 1 2 3 4 5

8. “ I am very confused on why 7 others felt he was on autism spectrum and these 3 people do not see it. All 7 have spent several hours a month with him and they did not spend much time with him.”

9. How satisfied are you with . . . Not at all Some what Very How the evaluations were explained to you 1 2 3 4 5 How the educational team and the physician listened to you 1 2 3 4 5 How the educational team and the physician made you feel like an equal member of the team 1 2 3 4 5 How their findings were explained to you 1 2 3 4 5 How your questions were answered 1 2 3 4 5 The diagnosis itself (e.g., language delay, autism) 1 2 3 4 5 The recommendations that were shared with you 1 2 3 4 5 Where the evaluation process was completed 1 2 3 4 5 How long it took to complete the evaluation process 1 2 3 4 5 If you had to go through this evaluation process again, would you? 1 2 3 4 5 Would you be willing to recommend the process to a friend? 1 2 3 4 5

10. Age First Concerned Age When Shared Concern What happened? Age at Dx 12 12 Ped referred to B-3 23 6 24 Ped referred to Dx Team 27 13 20 Ped referred to B-3 28 24 26 Referred to local agency 40 12 12 Ped told me to wait it out 53 21 26 Referred to B-3 56 24 54 No info from parent 68

11. “ I feel that everything that needed discussed was. Thank you all!!” “ I find this to be quite hopeful and helpful to me.” “ Everything was extremely satisfactory as far as personnel, time and location. We’re very thankful.”

12. Psychoeducational Partners (18/23 surveys) Evaluation typically took 2-2.5 hours Standardized tool, RBI and ADOS seen as very helpful for both diagnosis and intervention recommendations FQOL not helpful VERY confident in their results (5 on 5-pt scale) MD Partners (20/23 surveys) Length of evaluation depended on setting (1-3 hrs) Used results of tools (except FQOL) plus history plus DSM-IV VERY confident in their results almost all the time (18/20) – in two cases, scheduled child for further medical evaluation and follow-up appointment

13. Regarding the RBI: Seen as valuable as the ADOS, but for different reasons “ It’s so personal and so vivid.” “ I’m not going into the ADOS blind.” “ How else would you know that the child gets up and watches cartoons all day without the RBI?” “ The parent is right next me looking at the computer . . . You just can’t believe the look on these families’ faces.” “ I read every page before I see the child.” (the MD Partner!!) Regarding the ADOS: “ The manual is my Bible.” “ A lot of stuff to take in . . . A lot of stuff to write down.” “ I’m getting more comfortable every time.” Advice: “Score it right away!”

14. “ It’s fun.” “ This has been fabulous for families. They don’t have to travel.” “ We’re doing better all the time. The first ones were shaky as we were learning the tools.” “ We feel that taking the time to be together and DISCUSS is invaluable.” “ Families have had a weight lifted off their shoulders.”