Emory
University Autism Center
General
Description
The Emory
Autism Resource Center (EARC) is a University-based program for children
adolescents and adults with autism and related disorders, their families,
and professionals and agencies that serve them. The Center opened
in 1991 as a public, private and university collaboration. Since opening,
the EARC has become a model for diagnosis, family support, innovative
treatment and a vital source for professional training. This program
provides treatment and consultative services which strive to promote
full community participation for persons with autism.
Enthusiasm
is high as we move into the next phases of programmatic development.
Statistics for the past academic year show that the EARC provided
direct clinical care to 843 children and adults with autism, along
with support for their families. Interdisciplinary training and research
initiatives are aimed at having an even broader impact. The center’s
reputation as a resource of autism expertise is evident in widespread
requests for intervention and technical assistance, including contacts
from 40 states and 16 countries in the most recent year. EARC’s
ongoing coordination with more that 81 Georgia agencies and organizations
facilitates exchange of referrals for clinical care, research, and
training.
CLINICAL
SERVICES
Statewide
Family Support Program
Family
support in the treatment of autism spectrum disorders is crucial to
have persons with autism reach their highest potential. The Family
Support Program provides support and education about the disorder,
the range of outcomes and treatment options at initial diagnosis.
Parents and other family members are taught the specialized teaching
strategies that enable them to contribute to the person’s learning
at home and in their community. This program interrelates with other
EARC programs to optimize patient outcome. The program continues to
increase its service delivery annually serving over 350 families annually
with over 100 sessions per month. In addition to individual sessions
the Program also organizes programs for parents not only at the EARC
but across Georgia. Topics include such things as toilet training,
supported employment, inclusion, autism information for grandparents,
life after high school, kindergarten readiness, etc. New initiatives
for the current year include a parent education group in Northeast
Georgia. Efforts to make the program self-sustaining have been thwarted
by reimbursement policies of Georgia Medicaid. .
Medical
Services:
EARC
psychiatrists, who have expertise in psychopharmacology and pediatrics,
provide medication evaluations along with therapeutic follow-up and
physician consultation. Presently the Clinic meets one afternoon weekly,
staffed by two faculty child psychiatrists and child psychiatry residents.
Dr. Douglas Lee conducts psychiatric evaluations and Dr. John Griffin
supervises child psychiatry residents involved in follow-up treatment
and psychiatric consultation for patients and their families with
autism. Consultation to community physicians is also provided. Additionally
comprehensive diagnostic evaluations are offered to individuals of
all ages. These evaluations generate detailed treatment recommendations
through discussion with families and written reports. An average of
62 comprehensive evaluations are completed annually and over 110 patients
receive ongoing medication and evaluation follow-up annually. In addition
this service provides comprehensive and very complicated emergency
behavioral/medical consultation to about 10 persons and their families
per year. Improved efficiency in service delivery and dedicated service
from these providers have facilitated increased service delivery to
our population.
Interdisciplinary
Training
The EARC
programs achieve greater statewide impact by offering on-site training
at demonstration programs. Each year hundreds of professionals come
from across the state to observe and receive input for improving their
own programs. Training options for teachers and health care professionals
are developed individually, based on needs and interests with a range
of options available. Additionally the demonstration projects serve
as formal training sites for professionals in psychiatry, psychology,
education, social work, nursing, pediatrics, and family practice.
Annually over 100 hours/month of training are provided, and an average
of over 300 parent and professional contacts occur monthly. An annual
conference attracts approximately 250 parent and professional participants.
Community
Outreach
The EARC
staff places high priority on interagency collaboration and on participation
on statewide committees that may impact policy benefiting people with
autism. This includes contacts to 25-35 different community/state
entities on a monthly basis and contacts to over 100 of Georgia’s
counties annually.
Model
Demonstration Programs
The EARC’s
state-of-the-art programs for early intervention and elementary school
children provide examples of the enormous treatment possibilities
that have emerged from recent research. The EARC is committed to developing
similar standards of excellence in new programs for adolescents and
adults with autism.
The
Walden Programs
The EARC’s
nationally acclaimed Walden Lab Schools provide early intervention
in toddler, preschool, and pre-kindergarten classrooms. This continuum
of highly specialized treatment help children with autism learn from
the behavior of their normally developing classmates. The incidental
teaching procedures used at Walden have produced significant outcomes
of nearly all children enrolled. Annually approximately 25,000 hours
of state-of-the-art intervention are provided to 30-35 children with
autism in Walden’s toddler, preschool, and pre-kindergarten
classrooms and 40-48 typical children benefit from enriched education
and day care in Walden’s inclusive classrooms. More than 95%
of graduates with autism have been included in their neighborhood
regular education kindergarten classrooms (with various levels of
support), and more than 92 % of children leave the program with functional
verbal language. Walden serves as a model for replication programs
in Savannah, GA, San Diego, CA, and Auburn, AL, with new replication
programs in West Virginia and replication assistance in Maryland this
year. Professionals come from across the country and around the world
to observe these demonstration lab schools, and Dr. McGee and her
staff are invited regularly to present at regional, national, and
international venues. All Walden programs function as lab schools
for ongoing funded research. Contracts from local educational agencies,
Babies Can’t Wait and private donors provide scholarships for
eligible recipients.
The
Walden Programs include:
1. The
Walden Toddler Program: Clinical services provided are center and
home based early intervention and family support for children with
autism along with child care for typical children aged 1 to 3 years.
This program was initially funded by a 5 year model development grant
from the U.S. Department of Education, Early Education Programs for
Children with Disabilities “A Model for Early Treatment of Children
with Autism.” In addition the program has received funding through
a field-initiated research grant from the U.S. Department of Education,
Office of Special Education Programs, “Rethinking Social Interventions
for Children with Autism.”
2. The Walden Preschool Program: Clinical services provided include
language and social intervention for children with autism and enriched
early education for typical children aged 3 to 4½ years. Family
support is integral to this program. This program represents the centerpiece
of the lab school. Additional research activities have included a
grant from the MacMillan Foundation, “Incidental Teaching of
Literacy.”
3. The Walden Pre-Kindergarten Program: The clinical services provided
include school readiness preparation for children with autism and
typical children aged 4 ½ to 6 years and their families. This
program continues the lab school research. Additional research support
has been provided by the Georgia Trust for Children and the Elderly.
4. The Walden Outcome Project: Clinical services provided include
follow-up observational assessment and consultation for children with
autism who have graduated from Walden demonstration programs (ages
5-16 years). This program has received support from a grant from the
Ford Motor Foundation, “Pilot Follow-up Assessment of Residual
Characteristics of Autism in Children who received Intensive Early
Intervention.”
EARC Monarch Program (School-Age Program)
The Emory
Autism Resource Center’s Monarch Program hosts a number of direct
services that address school issues for the school-age student with
autism (K-12). These services include:
1. School
Inclusion Project: The Inclusion Project provides intensive, year-long
on-site training to Georgia counties implementing inclusive programming
for students with autism. This project accepts one county per year
under the systems change grant that is provided by CADEF. Each county
must commit to two years of involvement with the EARC program, with
additional years of follow-up available. Schools receive on-site training,
demonstration, modeling, parent support and additional information
and referrals (as needed) on a 1-3 days per week basis, throughout
the entire school term. The program is receiving state and national
attention for its excellence in educating students with autism. During
the past year this program expanded to Augusta. There are now a total
of eight Georgia school systems that have fully revamped their educational
programs for students with autism as a result of participation in
this program.
2. School Consultation Program: The Monarch Program also conducts
school consultations on individual students or programs throughout
Georgia. Parents, families, schools or agencies may request school
consultations when there are issues involving the education of a particular
student with an autism spectrum disorder. In addition, counties may
request a system-wide analysis to assist them in better educating
all of the students with autism. School consultation can be a single
visit or ongoing throughout the year.
3. Training: The Monarch Program conducts numerous teacher trainings
across Georgia. Training can be contracted by individual schools,
counties, RESA’s, GLRS, agencies or parents. Staff Development
Credits can be awarded for teacher certification. An Annual teacher
workshop is conducted each summer for teachers in Georgia and surrounding
states. On-site teacher workshops can be developed according to the
particular needs of the student or school.
4. Reading Clinic: Recently a reading clinic for elementary school
students with autism opened. The program offers individual interventions
based on the Reading Mastery curriculum with an integrated variety
of reading activities.
5. Individual Education Program (IEP) Analysis: Many parents wish
to have their child’s IEP reviewed for suggestions for improving
individual objectives for their child’s program. This component
provides these consultative programs for families throughout the school
term.
6. Information/Referral Service: Many teachers in Georgia seek someone
with experience in the field of educating children with autism to
offer information, assistance in problem analysis, and referral resources.
Staff talk with hundreds of teachers on the phone each year to provide
assistance with situational problems, to provide handouts and other
written materials, and to make referrals to someone in their area.
This service hopefully impacts school programming for many children
with autism.
Adult Community Assistance
Services
for adolescents and adults with autism have been developed over the
past 5 years with establishment of the EARC Adult Task Force and the
subsequent recruitment of Robert Babcock, Ph.D. Services for adolescents
and adults with autism include support for inclusion in community
settings through technical assistance to employers, school systems,
and other agencies. Among the programs already in place or on the
eve of implementation are:
1. Asperger’s Support Groups: Support groups which meet monthly
are hosted by EARC for both younger and older adults with Asperger’s
Syndrome. The purpose of these groups is to provide social support
to persons with Asperger’s while allowing them to give social
support to others.
2. Best Buddies: The Best Buddies program at Emory is a chapter of
the National Organization founded with a mission of providing friendship
and social experiences for persons with mental retardation and for
college students acting in a mentoring role. College students provide
community outings and social interactions with young adults with autism.
The EARC provide support to this mission for the participation of
persons with autism in the Emory Best Buddies Program. Staff at the
EARC work closely with student leaders to recruit buddies with autism,
to develop goals for the participation of buddies with autism, and
to offer technical support and encouragement for Emory students who
elect to partner with a buddy with autism in the Best Buddies program.
3. Emergency Behavioral Consultation: Emergency services involving
positive behavioral support for persons with autism who exhibit challenging
behavior patterns. Through behavioral analysis, treatment planning
and implementation and support for implementation challenging behaviors
can be addressed in the home and community. Dr. Babcock is developing
a Positive Behavioral Support Team at the EARC to expand these services.
4. Mentoring Program for Transition from High School: A new program
being developed is a mentoring program aimed at assisting individuals
with high school transition, employment, independent living, and social
activities.
The work
continues to elucidate normal social development in comparison to
the core social irregularities of children with autism. Our massive
longitudinal videotaped database on daily social functioning of more
than 300 children, 1/3 with autism, is an important resource. Researchers
at EARC have now embarked on the development of research aimed at
the understanding of the neurobiology of autism. These initiatives
include genetic studies, psychopharmacology trials, and cortisol response
to social stimuli. Dr. Lee, in collaboration with Dr. McGee and Clinton
Kilts, PhD, Vice Chair for Research, has applied for K-23 NIH funding
for a study on “Emotion Processing in Adults with Asperger’s
Disorder.”
Training Aimed at Expanding Treatment Capacity
A constant
challenge at EARC is that of meeting the demand for consultation,
training and services. Over the years training has been viewed as
a means of expanding treatment capacity. Over the past year as in
previous years, all EARC staff participated in training activities.
State of Georgia licensing credentials include: medical (3), clinical
psychology (2; plus 3 additional post-doctoral fellows preparing for
licensure); special education teaching certificates (3). EARC’s
staff includes more than 46 highly-trained employees (30 full-time
equivalents). Staff awards in the current year included: Professional
of the Year from the Georgia chapter of the Autism Society of America,
Literary Award from the national Autism Society of America, and Applied
Research Award from the Autism Society of America Foundation.
Residency/Internship
Training: This year, EARC provided extensive training to 5 psychiatry
residents, 1 psychology post-doctoral student, and 3 pre-doctoral
psychology interns. More abbreviated familiarity experience was provided
to 122 additional healthcare professionals, including pediatric and
family practice residents and students from 3 area nursing schools.
Interdisciplinary
Training Sequences: Across the past year, more than 4,000 current
and future professionals participated in training formats that ranged
from “hands on” practicum training, workshops, lectures,
grand rounds presentations, conferences, and ongoing consultation
and technical assistance. Specific training accomplishments include:
· Walden-related training sponsored by the Georgia Child Care
Council was provided to potential replication sites in Augusta, Brunswick,
and LaGrange, Georgia. Replication requests pending from North Carolina,
Virginia, Belgium, Italy, Jordan, and Vancouver.
· Monarch School Inclusion program provided training to 1,021
teachers, paraprofessionals, and speech and occupational therapists.
· EARC provided Continuing Education credits approved by the
Georgia Department of Child Care Licensing, the Georgia Psychological
Association, the Babies Can’t Wait Project SCEIS Committee,
and the Georgia Department of Education
· Invited presentations were provided in 13 states, including
addresses to national annual meetings of the Autism Society of America,
the Association for Behavior Analysis, and the Council for Exceptional
Children.
Research
Aimed at Improving Understanding and Treatment of Autism
EARC
has a long-standing commitment to conducting clinical research and
to facilitate basic research. Walden’s research in incidental
teaching, social development, and early intervention is already fostering
changes in the treatment of autism around the country, and final preparations
have been made to conduct formal controlled clinical trials (pending
NIH review). EARC staff also contributed to the research literature
via publication of two papers, three book chapters, and one co-authored
book. Other research initiatives during the past year include:
Social
conditioning: Research sponsored by an ASA/NARR foundation grant is
studying two methods of improving the social responsiveness of young
children with autism.
Epidemiology:
Researchers at EARC and the U.S. Centers for Disease Control and Prevention
(CDC) have been collaborating on research investigating reports of
increased autism prevalence.
Development
of a NIH-funded autism research center: As noted above, EARC was an
active collaborator with Emory genetics and neuroscience teams to
obtain the NIH Developing Center Grant in Autism and we intend to
establish interdisciplinary research, expand recruitment of autism
researchers, enrich cross-disciplinary research training, refine the
EARC clinical database, and expedite the establishment of a DNA repository
at Emory.
Other
contributions: EARC was represented on a panel commissioned by the
National Academy of Sciences to study the research base for early
education of children with autism, as well as on a CDC scientific
advisory panel planning studies of thimerasol vaccinations. Research
assistance has also been provided to faculty in other departments
at Emory, at Georgia State University and at Georgia Tech.
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