1. Characteristics of Adults with Autism Spectrum Disorder Amy S. Hewitt, PhD Roger J. Stancliffe, PhD Annie Johnson, MSW Jen Hall-Lande, PhD Charles Moseley, EdD Sarah Taub, MA Joshua Engler, MSW, MA Julie Bershadsky, PhD

2. Acknowledgements

3. Introduction  This study presents descriptive data on a random sample (N = 12,382) of individual users of adult IDD services from 25 states.  Data on characteristics of adults with diagnoses of autism/ASD are provided (subset n = 1,002), with comparison to IDD service users who have other diagnoses. This represents the first of four research articles we are writing based on the data set. Our other studies focus on residential and employment outcomes, and the relation of psychotropic medication usage to psychiatric diagnoses and challenging behaviors.

4. Background Adult Outcomes in Context of Autism/ASD Research articles on the following topics were reviewed for this study:  Prevalence  Demographic Characteristics  Communication Issues  Co-Occurring Conditions  Service Access and Support Use

5. Methods National Core Indicators (NCI) Instrument  NCI Consumer Survey “Background Section”  Obtained from individual records, self-reports, setting staff/proxy  Interviewer Training Standards  Manual, training video and slides, picture response formats  Reliability  Inter-rater agreement of 92%-93%  Test-retest agreement of 80% Sample (N = 12,382)  Drawn from all 25 states participating in the NCI program between 2006 and 2008 (except Maine which provided no data on ASD diagnosis)  Within states, samples were randomly selected among adults using IDD services (range: 137 to 1,594)

6. TX NM HI WA WY AZ OK KY AL SC NC WV PA VT DE CT RI Orange County Regional Center TX AR GA NM IN NY NJ LA MO 25 Participating States NCI Survey 2006-08 ME

7. Results In Context of State Service Policies  Overall, 8.1% had ASD Diagnosis  Large variability among states: 3.7% to 27.4%  Autism/ASD eligibility requirements for IDD services  19 of 25 states had related condition clauses  5 of 25 states had autism-specific HCBS waivers  Five states with both a related conditions clause and an autism-specific waiver had the highest percentage of service users with autism (9.3%, p <.001 )  6 of 25 states had neither policies  These 6 states had the lowest percentage of service users with autism (6.6%, p <.001 )

8. Wide Range of Individuals Identified With ASD in State IDD Systems Percentage of Participants with ASD

9. Most Individuals Identified With ASD in State IDD Systems Are Young Adults 4.5% p <.001 Percentage of Participants with ASD Age Group

10. Percentage of Total Differences Between Groups Based on Level of Intellectual Disability p <.001 ns p <.001

11. Males Are Disproportionally Among Persons with ASD in Each Age Group Age Group Percentage of Participants with ASD p <.001

12. Differences Between Groups Based on Related Conditions and Other Diagnoses 2.6% p <.001nsp <.001nsp <.001 2.6% Percentage of Total

13. Primary Means of Expression Adults with ASD Receiving Accommodations Related to Their Primary Means of Expression Percentage of Participants with ASD N = 12,382 n = 1,002 n = 15 n = 21

14. Summary of Key Findings Based on Sample of Adults with ASD  Inclusive policies and targeted programs matter  More young adults (without ID) represented  More likely to have no ID or severe/profound ID  Gender ratios were smaller in context of ID  Low usage of communication aids/devices  (0.8% of the total sample; 2.1% of those with ASD)

15. Reference Hewitt, A. S., Stancliffe, R. J., Johnson, A. C., Hall-Lande, J., Moseley, C., Taub, S., Engler, J., & Bershadsky, J. (2011). Characteristics of adults with autism spectrum disorder who use adult developmental disability services: Results from 25 US states. Manuscript submitted for publication.

16. Contact Information University of Minnesota Institute on Community Integration (UCEDD) University of Sydney Faculty of Health Sciences, Australia Human Services Research Institute National Association of State Directors of Developmental Disabilities Services Amy S. Hewitt, PhD hewit005@umn.edu Annie Johnson, MSW joh02055@umn.edu Jen Hall-Lande, PhD hall0440@umn.edu Roger J. Stancliffe, PhD roger.stancliffe@sydney.ed u.au Sarah Taub, MA staub@hsri.org Joshua Engler, MSW, MA jengler@hsri.org Julie Bershadsky, PhD jbershadsky@hsri.org Charles Moseley, EdD cmoseley@nasddds.org 102 Pattee Hall 150 Pillsbury Drive SE Minneapolis, MN 55455 Phone: 612.624.6300 Fax: 612.625.6619 Rm 119, J Block Faculty of Health Sciences 75 East Street PO Box 170 Lidcombe NSW 1825 Australia Phone: +61.2.93519984 Fax: +61.2.93519197 2336 Massachusetts Ave Cambridge, MA 02140 Phone: 617.876.0426 Fax: 617.492.7401 113 Oronoco Street Alexandria, VA 22314 Phone: 703.683.4202 Fax: 703.684.1395