characteristics of adults with autism spectrum disorder amy s. hewitt, phd roger j. stancliffe, phd...
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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, [email protected]
Annie Johnson, [email protected] Hall-Lande, [email protected]
Roger J. Stancliffe, [email protected]
Sarah Taub, [email protected]
Joshua Engler, MSW, [email protected]
Julie Bershadsky, [email protected]
Charles Moseley, EdD [email protected]
102 Pattee Hall150 Pillsbury Drive SE
Minneapolis, MN 55455Phone: 612.624.6300
Fax: 612.625.6619
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75 East Street PO Box 170Lidcombe
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
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Fax: 703.684.1395