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.