April, 2008 has been Autism Awareness Month around the world. In the U.S., the statistics of its occurrence is now up to 1 in 150 children. As these children grow, the cost of meeting their needs goes up and up. The assistance they will need when they reach adulthood will continue, although the needs will differ, depending on their abilities. It will be much more cost-effective to give them and their families the assistance they need in early childhood to maximize their potential. Support for legislative proposals aimed at giving support to families, as well as those with Autism and Asperger’s Syndrome, is crucial to reaching that potential. It is much more cost-effective to give that help at a young age than to provide the very costly assistance in adulthood.
An example of the effectiveness of early intervention is my 34-year-old son, Scott A. Rice. He was born in San Jose with immediate breathing difficulties, a kidney infection, and two early seizures. He was transferred from the hospital where he was born two weeks early, to a pediatric intensive care unit (one of only a few in 1973), which was affiliated with Stanford. There he stayed for approximately two weeks.
From the beginning, he screamed almost all the time he was awake, was hypertonic (very tense and stiff muscles), and had difficulty swallowing. At three months, he had only a one-month old’s abilities, at six months only a three-month’s abilities, etc., with the skill levels becoming wider apart as he grew, leveling out in elementary school to about a four-year difference. This difference continued into adulthood, although by then it was less noticeable.
Early intervention for him began at 2 years of age, when our attempts to find an accurate diagnosis began. Along the way, I managed to get him into various programs that were starting to deal with the odd behaviors that many Autistic children have. This was at a time when not much was known about Autism and only severe cases were being diagnosed here.
Most people thought he was just a quiet, shy child, which continued for many years. Scott did not receive an accurate diagnosis until he was 13 years old. He was diagnosed as “Developmentally-Delayed” locally, but that did not address all the unusual behaviors we were seeing at home and school.
After pulling together all the detailed records I’d kept of his difficulties at home and in other settings, I sent them to Dr. Ivar Lovaas, an internationally-known Autism researcher and professor at U.C.L.A., who felt that Scott might be Autistic and suggested he receive a 24-hour observation for one to three months. After a month’s stay in the U.C.L.A. Neuropsychiatric Hospital, receiving 24-hour observation in multiple settings there and in the community, undergoing many tests by a multi-disciplinary team, which, also, reviewed all the records I’d kept, Scott was diagnosed as having “Infantile Autism, Residual State”, which came under the umbrella term of “Pervasive Developmental Disability”. The diagnosis brought new long-term resources of help to him, including the resources of Kern Regional Center for the Developmentally Disabled.
Those who say that one should just treat the symptoms, that a diagnosis is not necessary, are wrong, They BOTH have to be addressed to be able to give the child or adult the most appropriate long-term treatment.
Communication is still difficult for Scott. He also has great difficulty figuring out peoples’ intentions and judging who it is safe to trust. He has always had a lack of fear, which in some situations can be helpful, but in others can lead him into trouble. A positive aspect of it is that he is always eager to try new things that help him to grow, without being afraid of failing.
Scott was in special education classes throughout elementary school, with integration into regular physical education and art classes at junior high age and in high school took regular Basic English, Basic Math, computer classes, and graduated with regular and special education honors from East Bakersfield High School in 1991. He took a computer class at B.C. and general office-skills training at M.A.O.F., then worked with the Employ America and ABLE agencies, which place developmentally-disabled adults in various occupations and work settings, according to their skill levels. He worked in a couple of retail stores doing stocking and in several restaurants, the last of which was the Stockdale Highway Outback Steakhouse, a job which lasted over seven years, until he developed tendinitis in one arm. He did janitorial and prep. work in those jobs. He really wants to do office work, which requires more training. His current plan is to attend B.C. in the fall, working toward a certificate in computer systems, hoping to eventually have his own business repairing business and residential computers.
Scott has a huge heart for people who need help of various kinds, understanding how it feels to need help. Scott has become an advocate for people with disabilities, always on the lookout for ways he can inform the public about their needs and abilities, offering hope to parents of children with Autism that their children, too, may be able to make the progress that he has made. He is currently a member of the City of Bakersfield Handicapped Access Appeals Board, Sequoia Area VIII Board for Developmental Disabilities (appointed by the Board of Supervisors to represent Kern County’s disabled people), the Board of Directors of the Kern Autism Network, Autism Society of America, and the Missions Commission of First United Methodist Church. He is, also, active with the local Special Olympics tennis team and volunteers for many community fund-raising activities. He enjoys being able to help others in any way he can. As you can easily see, I’m sure, I am very proud of him and the amazing progress he has made. The keys have been God’s gifts of eagerness to learn new things and great enthusiasm for helping others, early intervention, wonderful teachers along the way, and the support of so many who have come to know and love him.
