Progress in Autism: the last 20 years

Since Working With Autism, Inc. first opened its doors in 1997, there have been tremendous changes in the landscape of autism diagnosis and intervention. The decades of research have deepened our understanding of autism and ways in which we can make a positive impact in the lives of the families that we serve. As April is autism awareness month, this is an ideal time to reflect on the progress that has been made, as well as how we can continue to best meet the needs of individuals with autism.  In 1997, the rate of autism was estimated to be approximately 1 in 2,500 children, whereas we are currently facing a rate of 1 in 68 children being diagnosed with autism spectrum disorder (ASD). As the rates of autism have increased, so have the availability of services. Intensive ABA therapy was once only available to families who had the financial resources to dedicate to seeking out, fighting for, and privately funding such intervention. Now, with insurance mandates in place in 47 States, ABA therapies are more accessible to our families at home and in the school setting.

There has been significant progress in our understanding of the causes of autism, although we are far from having all of the answers. We know that there is a strong genetic component for this condition but scientists have been unable to find any one genetic mutation that would result in autism. This inability to narrow down a single gene for autism is leading scientists to think of ASD as many different conditions with similar behavioral symptoms rather than one condition with one cause. We have also made advances in recognizing that many aspects of our environment may contribute to autism. Bacterial or viral infections in the mother during pregnancy have been found to slightly increase the risk of autism. Taking prenatal vitamins with folic acid has been shown to reduce the risk of autism if taken before conception and throughout the pregnancy. Older fathers, particularly those over the age of 50, have a greater risk of having a child with autism. We continue to have more evidence about the differences in the brain development of individuals with autism even at the prenatal stage thereby indicating that the environmental influences on the condition can begin in utero.

In 1997, the estimated average age of children being diagnosed with autism was 4 years, 4 months old. Currently, the CDC reports the average age of diagnosis in the U.S. to be 3 years, 10 months. It is notable that research has shown a reliable diagnosis of autism as early as 2 years old. With early diagnosis comes the possibility of earlier intervention that can capitalize on the plasticity of the brain with greater ease of changing the trajectory of growth.  Early intervention has been proven to change underlying brain development and activity and in the long run to reduce the need for supports and services in school and into adulthood.

At present, ABA therapy continues to be the most evidence-based intervention for autism, but it has not been without its own set of controversies. The use of ABA for individuals with autism was first popularized by Ivar Lovaas, Ph.D. at the University of California Los Angeles (UCLA). Anyone who looks back at videos of ABA conducted in the 1980s may come across instructions given with robotic repetition, and a very artificial delivery of rewards and punishments that can feel jarring to watch at this time. Fortunately, there have been tremendous changes in how ABA is carried out since that time and current practitioners aim to provide a highly individualized approach for each child. At WWA, all intervention begins with an evaluation of the child’s current developmental levels and a thorough understanding of the behaviors that interfere with learning. The family is an integral part of the assessment process, providing their input, sharing their goals, and collaborating with the behavioral team to ensure that the child’s best interests are at the heart of all intervention. The child and family’s strengths are identified and capitalized upon, there is respect for the values and concerns of each family, and recognition of the fact that no one approach will be perfect for every child. Intervention is highly individualized and is incorporated into the daily routine of home life as much as possible. Targets of intervention are skills that will maximize a child’s potential for succeeding across the home, school, and community settings. There is recognition that neurodiversity exists and we don’t have to reduce stereotypical autism behaviors just because they are not the norm for neurotypicals.  The behaviors that are targeted for intervention are those that have social significance. In other words, behaviors that are meaningful for the child and will open up new possibilities and opportunities for growth. When young children receive ABA, there is an emphasis on incorporating teaching within play-based activities in order to increase intrinsic motivation, as well as providing the child with reinforcement-based procedures and positive behavioral supports.

In addition to progress in the field of ABA through rigorous and ongoing research studies identifying effective interventions for individuals with autism, there has also been an increased level of accountability for individuals who provide support for those with autism. Two decades ago, a bachelor’s degree was sufficient in order to work directly with an individual on the spectrum, and a master’s degree and some experience in the field was required in order to supervise and oversee the program.  Currently, it is a recognized standard to have individuals who are Board Certified Behavior Analysists (BCBA) provide the supervision/program development portion of services. Becoming a BCBA requires completion of coursework in Applied Behavior Analysis as well as passing a comprehensive examination which evaluates one’s ability to apply this knowledge in an ethical and sound manner. There is also a growing trend towards having direct line staff become Registered Behavior Technicians (RBTs), thereby ensuring that certain training and supervision standards have been met in order for these providers to implement behavior intervention services.

WWA has embraced and been at the forefront of the changes in the field to the greatest extent possible. While contracted with multiple school districts and Regional Centers, we also have worked diligently to contract with numerous Insurance companies, including Medi-Cal, to ensure availability of our services to all families regardless of their financial means. WWA is current and up to date with the latest research findings and provides this information to our staff through ongoing trainings and supervision.  We have also prioritized supporting all of our staff to become BCBAs as case supervisors and RBTs as direct service providers. We believe these changes ultimately translate into providing quality care for our families which enable the clients whom we serve to maximize their potential and achieve to the best of their abilities. Our goal is to continue this same level of commitment to our staff and our clients as the field of ABA continues to grow and expand through the next two decades.