Characteristics of Adults with Autism Spectrum Disorder

Amy S. Hewitt, PhDRoger J. Stancliffe, PhDAnnie Johnson, MSWJen Hall-Lande, PhD

Charles Moseley, EdDSarah Taub, MA

Joshua Engler, MSW, MAJulie Bershadsky, PhD

Acknowledgements

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.

BackgroundAdult 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

MethodsNational 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)

TX

NMHI

WA

WY

AZ OK

KY

AL

SC

NC

WV

PA

VT

DE

CTRI

Orange County Regional Center

TX

AR

GANM

IN

NY

NJ

LA

MO

25 Participating States NCI Survey 2006-08

ME

ResultsIn 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 )

Wide Range of Individuals Identified With ASD in State IDD Systems

0%

5%

10%

15%

20%

25%

30%

3.7%4.5% 4.5% 4.8%

5.4% 5.5% 5.7% 5.9%6.0%6.7% 6.8% 6.9% 6.9%7.5%

8.0%9.4% 9.7%10.0%10.4%

10.9%11.2%11.4%12.0%

19.7%

27.4%

25 State Samples

Per

cent

age

of P

artic

ipan

ts w

ith A

SD

Most Individuals Identified With ASDin State IDD Systems Are Young Adults

4.5%

18-29 30-39 40-49 50-59 60+0%

4%

8%

12%

16%

20%

2.53%

0.46% 0.50% 0.21% 0.06%

13.98%

8.01%5.65%

4.25%

1.79%

ID No ID

16.51%

8.47%

6.16%4.46%

1.85%

p < .001Per

cent

age

of P

artic

ipan

ts w

ith A

SD

Age Group

Pe

rce

nta

ge

of T

ota

lDifferences Between Groups Based on Level of Intellectual Disability

No ID Mild ID Moderate ID

Severe ID Profound ID

0%

5%

10%

15%

20%

25%

30%

35%

40%

10.2%

19.9%

26.8%

22.4%20.8%

3.6%

37.6%

28.1%

14.9% 15.9% AutismNo Autism

p < .001 p < .001 ns p <.001 p <.001

Males Are Disproportionally Among Persons with ASD in Each Age Group

Age Group

Per

cent

age

of P

artic

ipan

ts w

ith A

SD

18-29 30-39 40-49 50-59 60+0%

5%

10%

15%

20%

25%

21.6%

11.7%

8.2%6.2%

2.5%

9.3%

4.3% 3.7%2.3%

1.1%

MaleFemale

p < .001

Differences Between Groups Based on Related Conditions and Other Diagnoses

2.6%

p < .001 ns p < .001 ns p < .001 p < .001

0%

5%

10%

15%

20%

25%

30%

35%

40%

AutismNo Autism

26.1%

31.6%

27.5% 26.5%

9.4%

16.5%

6.1%8.0%

6.0%

13.0%10.2%

2.6%

Pe

rce

nta

ge

of T

ota

l

Primary Means of Expression

Adults with ASD Receiving Accommodations Related to Their Primary Means of Expression

Per

cent

age

of P

artic

ipan

ts w

ith A

SD

Spoken Language Gestures, Body Language

Sign Language Communication Aid/Device

Other Don't Know0%

5%

10%

15%

20%

25%

5.8%

15.2%

10.6%

22.3%

11.2%

8.5%

n = 533

n = 399

n = 26

n = 4

N = 12,382 n = 1,002

n = 15

n = 21

Summary of Key FindingsBased 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)

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.

Contact Information

University of MinnesotaInstitute 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, PhDhewit005@umn.edu

Annie Johnson, MSWjoh02055@umn.eduJen Hall-Lande, PhDhall0440@umn.edu

Roger J. Stancliffe, PhDroger.stancliffe@sydney.edu.au

Sarah Taub, MAstaub@hsri.org

Joshua Engler, MSW, MAjengler@hsri.org

Julie Bershadsky, PhDjbershadsky@hsri.org

Charles Moseley, EdD cmoseley@nasddds.org

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