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The September issue of Los Angeles magazine explores the ways in which autism affects us all. Here, three City Thinkers tell us what California should expect with its growing population of people with autism and what we should do now
Portrait of Aidan and Kate Movius by Mathieu Young
Magdalena Beltrán-del Olmo
Vice President of Communications, The California Wellness Foundation
As a parent of a son with autism who turned 18 this year, I foresee a California already experiencing the Autism Tsunami of Young Adults—and not yet having a strong support system to help them achieve independence or semi-independence. The period during the late 1980s through the 1990s saw a dramatic spike in the number of children receiving autism and related diagnoses. We parents had intervention and skills-building programs to tap, though they were complicated to navigate, as well as the Individuals with Disability Act (IDEA) to advocate for children through age 18 and help us integrate them into our communities in schools, athletic programs, and other youth-focused activities. We did this while battling with health insurance companies to get our kids help.
But everything changes at age 18. Not only does the law recognize them as independent adults, but many protections they enjoyed through IDEA dissipate, as the law assumes people with autism can advocate for themselves using the weaker Americans with Disabilities Act (ADA). But this is not necessarily the case; many adults with autism have trouble self-managing their behaviors and have difficulty with social interaction skills, often rendering the ADA protections useless. The parents cannot legally advocate for their independent adult children unless they go through the complicated, time-consuming, and expensive conservatorship process to legally represent their adult children—something I have chosen to do for my son, Frankie.
Moreover, there are simply not enough adult-focused programs and support systems to handle the increased number of young California adults with autism. That includes special-education programs at the college and trade school level, independent community-living programs, and awareness efforts aimed at key societal entities—for instance, a program to help officers understand the anxiety and sensory overload issues that adults with autism experience under duress, sometimes resulting in unusual behaviors that law enforcement can mistake for defiance or erroneously give the perception of “guilt.”
Lucky for us, California is a national leader in addressing this tsunami. Our state appointed the nation’s first Legislative Blue Ribbon Commission on Autism several years ago that issued a groundbreaking report as a blueprint to address the challenges we face. The state’s follow-up—the California Senate Select Committee on Autism, with its regional task forces—is now working to implement policies to improve the situation for Californians and their families who live with autism. The future is looking better, but there is still much work to do if we are to help a significantly growing segment of California’s population become productive, integrated members of our society.
Dr. Doreen Granpeesheh
Executive Director, Center for Autism and Related Disorders Inc.
During the past two decades the incidence of autism has increased from 1 in 10,000 to 1 in 100 children. While we are discovering the combined causes of genetic and environmental factors, the state of California is overwhelmed by its ongoing struggle to meet the needs of its residents afflicted with this disorder. These needs are continuously growing due to the sparseness of trained teachers in our schools as well as the desperate state of our budget, which results in ongoing cuts in funds allocated to the treatment and care of this disorder. As we search for ways to meet the demand for treatment and find early predictors that may help us remedy the problem at hand, we must not lose sight of the effectiveness of techniques already established and accepted, and we must focus our efforts on more efficient dissemination of these treatment modalities.
Applied Behavior Analysis (ABA) has been widely recognized as the single most effective form of treatment for autism. However, the proper use and administration of ABA depends on extensive training, which unfortunately leads to a deficiency of trained professionals. The only solution is a rapid and effective statewide training program that will enable our teachers to access and provide high-quality behavioral programs in our schools, thereby preventing the ongoing stress imposed upon our state budget. Such a training program can only be provided through the use of Internet technology. One such Web-based program—SKILLS (Shaping Knowledge Through Individualized Life Learning Systems)—has been positioned to provide online training for teachers, detailed assessment of each individual’s symptoms, and a comprehensive curriculum of lesson plans to address and improve each of these symptoms. Programs such as SKILLS are essential for our state to maintain its position as a leader in service provision for autism. We at the Center for Autism and Related Disorders have used this online system to train our therapists across not only our 12 California locations, but also our staff across our 20 sites nationally and internationally. It is our hope that through online training we will not only expand our team of 1,000 therapists, but we will also help equip our state’s school districts with the tools they need to meet the growth of autism in California.
In addition, continued efforts to bring health insurance coverage to California will reduce the financial strain on our educational system and will provide individuals with autism the care and treatment they have every right to receive.
The Los Angeles Unified School District (the District) is experiencing significant increases in the number of students identified as having autism that parallel the increases in this population experienced by California as a whole. Based on recent research as well as the recommendations from two committees established by the state to address the needs of individuals with autism, the District, through its Division of Special Education, continues to adjust our professional development and instructional programs to meet the unique needs of students with autism as well as provide appropriate support and information to their families. The Division of Special Education employs specialists and teacher experts in the area of autism who provide technical and instructional support to our programs serving students with autism and is currently in the process of initiating an innovative instructional model to serve students with autism from early childhood through the secondary level. Staff from the Division of Special Education continue to actively work with staff from the state and university teacher preparation programs to ensure that the District is at the forefront of any advances in the field of autism that may help improve the programs and support we provide our students with autism. At both the state and District level, the quest for effective practices, services, and support to address the needs of students with autism and their families is ongoing.