A Pennsylvania emergency room doctor and three professors from Indiana University of Pennsylvania have created a training manual and DVD to help ER clinicians deal more effectively with patients on the autism spectrum.
Funded through the Bureau of Autism Services of the Pennsylvania Department of Public Welfare and Autism Services, Education, Resources and Training (ASERT), the training protocols are currently being promoted in hospitals across Pennsylvania, and the manual’s authors say the expanded goal is to incent health systems and medical professionals nationwide to better prepare practitioners to treat the rising prevalence of patients with autism spectrum disorders (ASD).
“So often practitioners misconstrue behavior of patients with autism and do not realize the behaviors they exhibit are not maladaptive but rather those that characterize the condition, and this leads to poor outcomes,” says Dr. Arvind Venkat, vice chair of the department of emergency medicine at Allegheny General Hospital in Pittsburgh and co-author of the “Assess Communicate Treat for Autism (ACT)” training manual along with Joann Migyanka, a former teacher of children with autism and associate professor of special education at Indiana University and now autism consultant; Jeffrey Fratangeli, director of program evaluation and accreditation in the College of Education and Educational Technology at IUP; and Susan Glor-Scheib, professor in IUP’s special education and clinical services department.
“It’s time for those of us in the general health care system to get prepared,” says Venkat, noting that ACT recommends care delivery that will result in the best experience and outcome for the patient and his/her family members.
The noise, bright lights and frantic pace of an emergency room may allow medical practitioners to save lives, but the environment can be extremely threatening for patients with autism. “The environment is very anxiety producing for a person trying to make sense of the world and having a difficult time with anything new or novel,” says Migyanka, and now associate professor of special education at Indiana University and autism consultant. “Things usually go from bad to worse from the misunderstanding of sensory or communication cues.”
ER experiences have been very traumatic for individuals with ASD and their families, says Donna Murray, senior director of Autism Speaks Autism Treatment Network (AS ATN). AS ATN provides information designed to empower families and individuals on the autism spectrum and offers free resources, tools and toolkits that families and medical professionals can download from the Autism Speaks website. “Providing health care providers with useful tools is an important step in improving the ER experience for the person with ASD and their family,” Murray says.
The recognition that adverse outcomes can be prevented if a worker knows the right way to approach patients and to work with family members has led the Pennsylvania autism services area and the state’s regional collaborative and hospital systems in other states to develop autism friendly treatment programs. As with the ACT manual, The University of Southern Florida’s “Autism and the Hospital Emergency Room,” for example, assists practitioners by alerting them to behavioral cues that help them to identify patients with autism.
Additionally, workers have to speak to patients and introduce [medical] actions more slowly to avoid heightening anxiety, says Migyanka.
Protocol guidelines from ACT and the Florida manual include the following recommendations:
· Usher patients to a quiet, more dimly-lit room with less equipment
· Avoid multistep questions and stick to questions that require only a “yes” or “no” answer
· Communicate with the care giver or family member, if one accompanies the patient, to get an effective medical history
· Keep voice calm and minimize words and touch
· Let patients see and touch the instruments and materials that will be placed on their bodies
· Use a warm blanket to calm a patient down and administer mild doses of medication rather than physical restraints to quiet a patient
The Pennsylvania team is providing training to emergency nurses and other ER personnel in Pennsylvania and participants are surveyed prior to and following training. According to Migyanka, about 90% of participants know or have encountered someone with autism. The good news: Following training respondents say they feel more comfortable and better equipped to help these patients.