Thursday, February 23, 2012
Dear Mr. Leys,
We read your recent article, "Autistic man struggles in Iowa's mental health system" in the Des Moines Register (February 4, 2012), and applaud you for bringing to light a challenging, but unfortunately prevalent situation for many adults with autism and their families. You captured the heartbreaking reality that many individuals with autism in Iowa face when they enter an adult system that is ill-equipped to address more severe behavioral needs.
The story of this young man and his family is one that is not an isolated situation or specific to Iowans alone. As you pointed out, the cost of managing care can be overwhelming - and a lack of expertise and resources to effectively address behavioral challenges in adults can put the individual as well as caregivers and staff at risk. Given the large numbers of children with autism quickly aging out of the educational system, a looming crisis will soon become a reality.
It is important to note that challenging behaviors will not calm with time alone. Behavior challenges in children and young adults that are not adequately addressed may escalate in severity over time. The older and bigger they get, the harder it is to control the more serious outbursts. This can result in environmental restrictions, and restraint – both physical and chemical (medication). When the outcome of this is an isolated living environment with few social opportunities, the toll is not only physical, but emotional. As a result of your story, your readers can now better appreciate the impact of a broken system on family as well.
As an alternative, with appropriate and adequate resources and supports, treating these behaviors is possible. At this time we know a great deal about treating challenging behavior, including self-injury. The scientific literature documents hundreds of research articles that demonstrate the benefit of interventions based on the principles of applied behavior analysis. Teachers and other providers are often not well versed in how to assess these behaviors, understand their underlying purpose, develop a comprehensive behavior plan, and ensure that that plan is adequately and consistently implemented.
Thank you for an eye-opening piece of journalism and for raising awareness for individuals with more significant needs. Again, there is a large population of children and adolescents that will become adults and enter a system that is under-resourced and ill-prepared. This prompts a critical look at services for not only adults with developmental disabilities, but also the existing systems that serve persons with greater needs.
Toli Anastassiou, MA., BCBA and David Celiberti, Ph.D., BCBA-D
Association for Science in Autism Treatment