Article By: Laura Briggin
Article Date: 11/20/2006
The word ‘autism’ did not mean anything to me in 1972 when I signed on as a college volunteer to teach children with autism to swim and tutor them in their classrooms. I never would have dreamed that I’d continue working with people with autism, turning it into my career. As a typical Californian teenager, swimming, playing bluegrass guitar, and traveling were interests I wholeheartedly shared with these children as they shared their unique interests with me. Since that initiation 34 years ago, I’ve happily worked, played, and traveled with children and adults with autism in schools, residential services, and adult day programs, especially those providing positive behavior supports. I am currently the Principal of A Better Chance (ABC) School and the Director of A Better Chance Day Programs in Richmond, California. Imagine my delight when through a professional connection, my experience and chosen autism career brought me to the country of Slovenia in the summer of 2006!
In 2005, our ABC programs for children and adults with autism caught the eye of Dr. Marta Macedoni-Luksic, an innovative Slovenian pediatric neurologist who founded the Institute of Autism Spectrum Disorder in Ljubljana, Slovenia. In 2004-05, Dr. Luksic spent a year researching autism as a Visiting Fulbright Scholar at the Medical Investigation of Neurodevelopmental Disorders (MIND) Institute at University of California Davis Medical Center in Sacramento. During her Fulbright studies, Dr. Luksic visited our school and other ABC programs and was impressed by the broad span of our students’ and clients’ ages and the range of their abilities. She also admired the range of services that ABC provides 24 hours per day, 7 days per week across the greater San Francisco Bay Area.
Since her MIND Institute fellowship, Dr. Luksic, in conjunction with a small group of professional colleagues and her own privately-funded Autism Institute, has begun to diagnose and assess Slovenian children and adults who may be on the autism spectrum. Based on her visits to the ABC programs and school, Dr. Luksic was inspired to bring the concept of a lifelong array of services for autistic children and adults to her home country. It may take 10 years or more to develop Slovenian system-wide changes needed to implement a full array of autism services including parent training, life long education, housing, employment, and community integration. To continue to make her dream a reality, Dr. Luksic sponsored the ABC School Assistant Principal, Mr. Matt McAlear, and me to come to Slovenia in July 2006 to hold a present a four-day seminar about program development. Our audience was Slovenian medical and education professionals and staff as well as parents.
I had my first encounter with autism in Slovenia soon after arriving in our host city of Ljubljana. On my first night while walking from my hotel several kilometers to the downtown area, I turned down a narrow alley toward the sound of live music. I found myself at the back of a large crowd watching solo artists and small groups as they sang, danced, and spoke their theatrical parts with joyful exuberance, often engaging with the crowd as street theater does. I spoke to a handsome man on my left and asked the name of the group performing at the time, and specifically who was performing such a fine ballet piece. The man said, “That is my daughter!†with the kind of pride all parents feel when they see their adult child carrying out a wonderful achievement. Tears welled in my eyes and I started to get choked up, as this was a group of adults with developmental disabilities and autism from the Soncek Adult Services Program performing in their city’s Summer Performances. Here was community inclusion of persons with special needs! Later I came to understand how unusual and innovative this group is, as they provide diverse work and activity programs for adults with disabilities in Ljubljana.
On our initial working day in Slovenia, Mr. McAlear and I met with Dr. Luksic and the directors and staff of the Slovenian State Institutions. We toured several beautiful large countryside residential facilities, group homes, and farm work sites for children and adults with developmental disabilities. On the tour day Mr. McAlear and I gave a brief overview of the ABC array of services, and answered questions such as the length of time and resources it typically takes for U.S. agencies to develop their programs. The answer: a long time and a lot of resources! While visiting the Slovenian institutions and programs, Mr. McAlear and I were impressed with the caring professional teaching staff as well as the friendly learning and living settings. When we asked where the children with autism spent their days, the answer was that the ‘lighter’ cases attended public special education classes or, as adults, worked in sheltered workshops and lived at home. The ‘heavy’ cases were excluded from school and day programs, and either stayed at home or were in institutions. The Slovenian teams expressed some of the same challenges that we face in the United States: a lack of funding for an array of autism-specific services. We all agreed that developing an array of life long autism services in Slovenia would be a long process requiring families, government, medical, higher education, and institutional services to strategically plan together.
During the first institution site visit, we saw rows of children with severe and profound physical and mental disabilities in beds and wheelchairs, well engaged in education or receiving medical care. There was one child who was an exception – a distinctly physically coordinated ten year-old boy was rapidly swinging in a hammock, shoving away from the walls with quick kicks. Although not diagnosed with autism, it soon became apparent that this boy met the criteria of autism spectrum disorder. The most outgoing therapist at the institution showed us an inspiring sensory motor therapy room called “The Womb†with soft lights, music, and comfortable pillows for relaxation and stimulation. The boy with autism came into the room and sat down at the computer to pick out and play his favorite songs at a high volume. Although he was non-verbal, he did respond to the therapist’s request to turn the music down. According to the staff, this boy did have one playmate that wasn’t there that day, so our worries about his daily social engagement with an active friend were somewhat appeased.
On the three subsequent training days with Dr. Luksic, the Slovenian psychologists, educators, therapists, and parents, Mr. McAlear and I found that small work groups followed by group discussions worked best as our primary teaching methods. We presented information about our model, techniques, and programs in English, which was then translated into Slovenian. We brainstormed and practiced teaching strategies on academics, work and service learning, augmentative communication, language development, community living skills, physical education, sensory-motor therapies and positive behavior supports. We shared how our ABC staff support our children and adults with autism to participate in daily integrated community activities such as going to neighborhood parks, libraries, shops and movies, getting a job at the local garden and record stores, taking a tennis class at the local college, performing in regional choir concerts, and taking overnight trips to Lake Tahoe, Yosemite National Park, and Hollywood. The participation of our ABC children and adults with ‘heavy’ autism in many integrated community activities was a revelation for the training participants.
During our visit and training in Ljubljana, Mr. McAlear and I recognized that the Slovenian strengths in services for developmentally disabled included:
• extended family supports for some individuals with disabilities (most without government support)
• professional institutional care for severe and profoundly disabled (non-autism specific)
• dedicated medical and therapy staff in the institutions
• some community based school and day services (like Soncek!) that are providing great programs
• an admirable ability to pool resources for such a small country.
The challenges in Slovenian service provision for children and adults with autism we observed included:
• a lack of basic knowledge about autism in general society
• few medical and educational professionals able to conduct specific assessment and testing for autism at the primary diagnosis stage
• the active exclusion of many individuals with autism and challenging behavior and learning needs from participation in everyday society
• institutionalization of more challenging people with autism
• limited professional training specific to life-long, comprehensive autism services at the university level.
Dr. Luksic and her Autism Institute have successfully begun the education and trainings of physicians, psychologists, educators, and families and are providing assessment and diagnosis for children and adults with autism spectrum disorders. Mr. McAlear and I came to Slovenia because we were inspired by Dr. Luksic’s dedication to people with autism, their families, and their specialized support needs. We were encouraged by the highly-qualified professionals, services, and actual physical environments for some groups of individuals with disabilities. We acknowledged the long road that Slovenia will have in growing its own array of services that specifically includes children and adults with autism. It is our hope that we were able to positively influence the professionals and families in the development of their own long-range vision for supporting their children and adults with autism to become more social, educated, and contributing members of their home communities.
Mr. McAlear and I are looking for more opportunities to actively collaborate with educational, medical, and family organizations around the world that are interested in hosting similar autism service seminars. Our wish is that these global partnerships will provide an ongoing exchange of functional and professional information at the practitioner and university levels to be used to benefit individuals at all levels.
Laura Briggin, MS. Special Education
Principal, A Better Chance School and
Director, A Better Chance Day Programs
Board Certified Behavior Analyst
A Better Chance Programs
4075 and 4138 Lakeside Drive, Richmond, CA. 94806
lbriggin@calautism.org
510-812-7962 cell phone
510-758-1040 office fax
www.calautism.org