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Developmental Disabilities |
University of Pennsylvania / The
Children’s Hospital of Philadelphia
Center for Autism and Developmental
Disabilities Epidemiology
The University of Pennsylvania/The
Children's Hospital of Philadelphia Center for Autism and Developmental
Disabilities Epidemiology is the CADDRE program studying ASDs in
Pennsylvania. The Pennsylvania counties in the project are Chester,
Montgomery, and Philadelphia.
The Pennsylvania center will conduct four
projects:
1. Monitoring Activities
It is not currently known how many children living in Pennsylvania have an
ASD. During the period 1992 through 2001, the number of children served in
Pennsylvania under the Individuals with Disabilities Education Act (IDEA)
increased 855%. IDEA is the federal law that supports special education and
related services for children and youth with disabilities. In the three
counties in this project during the 2000–2001 school year, over 2,350
children ages 3–5 years received special education services, and 613 of
these children had autism classifications. Of the 10,449 children aged 6–9
years who received special education services, 430 were classified as
having autism. There are, however, additional children with ASDs who are in
other types of special education classes, who are in regular education
classes, who attend private school, or who are home schooled.
The Pennsylvania center will use multiple
sources to obtain a more complete estimate of the number of children in the
project area with an ASD. The center will study whether ASDs are more
common in some groups of children than in others. The center will also
study whether the number of children with ASDs is changing over time. The
monitoring will focus on children 8 years of age in Philadelphia County.
2. National CADDRE Study
The Pennsylvania center will work with the other CADDRE programs to find
causes of ASDs or factors that make it more likely that a child will have
an ASD. Families who take part in the study will answer survey questions;
children with ASDs will be tested, and staff will look at children’s birth
records. Children aged 3–5 years will be included in the combined centers
study. Children with ASDs will be compared with children who do not have an
ASD.
3. Special Studies
The Pennsylvania center is interested in studying genetic and environmental
factors and their roles in causing ASDs. The Pennsylvania Center is also
interested in screening children at an early age for signs of an ASD. The
first project will focus on screening toddlers aged 18–24 months for early
signs of ASDs. After a child is diagnosed as having an ASD, the
Pennsylvania center will study ways to help parents manage the issues that
arise as they seek medical and other treatments as well as educational and
other services for their child.
4. Sharing Information and Community
Outreach
The Pennsylvania center plans to train nurses, physicians, educators, and
other providers of health and educational services to screen children for
signs of a DD and ASDs. Information will be shared through mailings to
parents and support groups, and the media, and through scientific
publications, and presentations to teachers, clinicians, and other
professionals. A research registry, currently under development, will link
families to researchers.
For further information, please contact:
Ellen Giarelli, EdD, RN
Research Projects Director
University of Pennsylvania, School of Nursing
420 Guardian Drive
Philadelphia, PA 19104
Phone: (215) 746-0041
E-mail:
giarelli@nursing.upenn.edu or
CADDRE@nursing.upenn.edu
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Date: October 29, 2004
Content source: National Center on Birth Defects and Developmental
Disabilities
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