Dear Ms. Jewett,
We are writing in response to your recent article, “Nowhere to go: Young people with severe autism languish weeks or longer in hospitals.” We would like to commend you for highlighting an important issue, which is the extreme difficulties people with autism and their families encounter in crisis situations. Your article also highlights the current need for more appropriate supports for individuals with autism (and related conditions) who display behaviors of concern, especially in crisis situations.
At the beginning of your article, you state that there are currently not enough community resources available in most areas to adequately deal with severe behaviors of concern which pose a risk to the individual with autism and/or those around him or her (including family members). When these individuals and families are in crisis and people are in danger, emergency services may be a first port of call, regardless of in home supports. However, as you pointed out, traditional emergency rooms and psychiatric departments are ill equipped to manage most of these cases, sometimes leading to prolonged hospital stays without appropriate treatment. Without access to appropriate treatment, people with autism and behaviors of concern may be subjected to chemical and mechanical restraint, which are restrictive interventions that may not be necessary in a more specialized therapeutic setting.
Within the field of Applied Behavior Analysis (ABA), a functional behavior assessment may be used to understand the reasons why individuals with autism and related conditions engage in behaviors of concern, prior to treatment. When the function of the behavior is identified, interventions can be designed that teach the individual to communicate or access his or her wants and needs in more socially appropriate ways. Hundreds of scientific studies have demonstrated the efficacy of function-based treatments, or those that link treatment to behavioral function, for reducing behaviors of concern in people with autism, without the use of restrictive interventions.
Most medical and allied health professionals lack the training and expertise to conduct functional behavior assessments and write, implement, and monitor function-based treatment plans. Without proper training in evidence-based practices, professionals may resort to using restrictive interventions to respond to and manage behavior problems. Given the acumen required to conduct proper functional behavior assessments, medical and allied health professionals should seek support and supervision from a Board Certified Behavior Analyst (BCBA) when working with individuals with autism, especially individuals who display more severe forms of challenging behavior. Many states are now licensing behavior analysts in an effort to provide additional consumer protection and safeguards. The Behavior Analyst Certification Board (www.bacb.com), an internationally recognized organization, describes the education and training requirement to obtain the BCBA credential. However, even with more access to scientifically validated treatments and credentialed treatment providers, emergencies may still arise which necessitate calling 911 to maintain safety. Therefore, it would be beneficial to provide more educational programs to first responders and emergency department personnel on how to safely manage and de-escalate behavioral crises displayed by people with autism.
Thank you again for pointing out such an important topic. We hope that you will consider sharing our response to your article with your readers to help us disseminate information about evidence-based and humane strategies for safely and effectively managing behaviors of concern displayed by individuals with autism.
Sincerely,
Justin DiScalfani, Ph.D., BCBA-D, LBA & Erin Leif, PhD, BCBA-D
