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
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.
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
Methods
National Core Indicators (NCI)
Instrument

NCI Consumer Survey “Background Section”


Interviewer Training Standards


Obtained from individual records, self-reports, setting staff/proxy
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)
25 Participating States
NCI Survey 2006-08
WA
VT
NY
WY
PA
IN
MO
HI
Orange
County
Regional
Center
AZ
NM
NM
OK
WV
KY
SC
AR
AL
TX
TX
NC
LA
GA
ME
RI
CT
NJ
DE
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 )
Percentage of Participants with ASD
Wide Range of Individuals Identified
With ASD in State IDD Systems
30%
27.4%
25%
19.7%
20%
15%
12.0%
11.4%
10.9%11.2%
10.4%
10.0%
9.4% 9.7%
10%
8.0%
6.7% 6.8% 6.9% 6.9%
4.5% 4.5% 4.8%
5.4% 5.5% 5.7%
7.5%
5.9%6.0%
5% 3.7%
0%
25 State Samples
Percentage of Participants with ASD
Most Individuals Identified With ASD
in State IDD Systems Are Young Adults
20%
16.51%
16%
ID
12%
13.98%
No ID
8.47%
8%
6.16%
4.5%
4.46%
8.01%
4%
5.65%
4.25%
2.53%
0%
18-29
p < .001
1.85%
1.79%
0.46%
30-39
0.50%
40-49
Age Group
0.21%
50-59
0.06%
60+
Differences Between Groups Based
on Level of Intellectual Disability
40%
37.6%
Percentage of Total
35%
30%
26.8% 28.1%
25%
22.4%
19.9%
20%
14.9%
20.8%
15.9%
15%
10%
5%
10.2%
3.6%
0%
No ID
p < .001
Mild ID
p < .001
Moderate ID Severe ID Profound ID
ns
p <.001
p <.001
Autism
No Autism
Percentage of Participants with ASD
Males Are Disproportionally Among
Persons with ASD in Each Age Group
25%
21.6%
20%
15%
11.7%
10%
9.3%
Male
Female
8.2%
6.2%
4.3%
5%
3.7%
2.3%
2.5%
1.1%
0%
18-29
30-39
40-49
Age Group
50-59
60+
p < .001
Differences Between Groups Based on
Related Conditions and Other Diagnoses
40%
Percentage of Total
35%
31.6%
30%
26.1%
27.5% 26.5%
25%
20%
Autism
No Autism
16.5%
15%
13.0%
9.4%
10%
8.0%
6.1%
10.2%
6.0%
5%
2.6%
2.6%
0%
Psychiatric
Diagnosis
p < .001
Seizure
Disorder
ns
Vision
Hearing
Physical
Down
Impairment Impairment Impairment Syndrome
p < .001
ns
p < .001
p < .001
Percentage of Participants with ASD
Adults with ASD Receiving Accommodations
Related to Their Primary Means of Expression
22.3%
25%
n = 21
20%
15.2%
n = 399
15%
11.2%
10.6%
n = 26
n = 15
10%
8.5%
n=4
5.8%
n = 533
5%
0%
Spoken Language
Gestures, Body
Language
N = 12,382 n = 1,002
Sign Language
Communication
Aid/Device
Other
Primary Means of Expression
Don't Know
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)
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
Human Services
Research Institute
National Association of
State Directors of
Developmental
Disabilities Services
University of Minnesota
Institute on Community
Integration (UCEDD)
University of Sydney
Faculty of Health
Sciences, Australia
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
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