By Jennifer Andrea Genson-Pat, BSN, RN, CCM
Autism Spectrum Disorder (ASD) limits a person's capacity to communicate with others, resulting in difficulties with social engagement. People with ASD may struggle to interpret verbal instructions or to use and understand nonverbal clues such as body language and tone of voice. Coping with change and the inability to speak effectively are two of the challenges of my 9-year-old son who was diagnosed with non-verbal autism with ADHD. He is a very sweet boy and I want to be able to understand his world and try my best to modify the situation to make it easier for him.
During the pandemic, his difficulties have intensified, particularly with COVID vaccination. He took the first dose and it was horrendous. It was heartbreaking to see him cry; he was kicking and considerably dysregulated; it was a mass vaccination, so you can imagine how difficult it was for him to deal with the sensory overloads. He cried for about an hour after the immunization and I felt helpless; it was just very hard for him to understand.
He was scheduled for a second dose after a few weeks and I felt I was well prepared. I packed a bag of toys for him to hold and some of his favorite foods and I collaborated with the clinic to discuss how to make my son's immunization as smooth as possible. We went to the clinic and he was placed in a quieter and private room; he had his toys and favorite foods. I anticipated it to be a success, but I was mistaken. He was still sobbing, yelling, pleading and saying "no." Oh! It was agonizing to watch his eyes begging. After the immunization, he became dysregulated and began weeping and shouting. "There should be something I can do," I told myself.
The booster dose allowed me to plan and adjust my interventions. After months of reading articles, studies and research, I came across the social story. According to TheSchoolRun.com, social stories can assist youngsters with special needs in comprehending circumstances in a clear and relevant manner. It is a learning tool that facilitates the flow of information between parents, educators, and children with special educational needs. They were invented in the 1990s by autism consultant Carol Gray.
I used the "first and then" technique in the social story. I gathered photos and then printed and cut them into 1/4-size bond paper squares, so he could only focus on one image or task at a time. I also put a check box that he could utilize every time he completed a task, giving him a sense of control over the situation. I labeled my social story, “I'm Going to Get Vaccinated." I began the story with him riding in the car, entering the clinic, meeting with the receptionist and meeting with the nurse. I also included a photo of the syringe with an ant at the tip of the needle. We practiced the social story every day for a week before his scheduled appointment. On the day of the appointment, he knew what to expect; there was no sobbing, and he was walking towards the clinic, more cooperative; he was a little scared and was holding my hands tight and was hesitant to get inside the room; however, when I showed him the social story, he felt more assured. He did it! There was no dysregulation and everything went smoothly and easily for him and everyone else. He felt more in charge of the situation after presenting him with the social story and having him tick off each task completed.
Immunizations should not be traumatic for these children. The social story may not work for everyone, but it's worth a try. As an advocate, I would suggest that the clinic provide a printed social story to the patient at least two weeks before the visit and that the speech therapist would work with the support system/parent to guide or coach them on how to use it.
Bio: Jennifer Andrea Genson-Pat, BSN, RN, CCM, is currently a Case Management Lead Analyst for coaching for a US insurance company. She provides wellness coaching, medical decision support, information on potential gaps in care, and risk readmission to customers through assessment, education, support, and referrals to various health and wellness programs. She has 17 years of nursing experience. She has worked as a Medical Surgical Nurse, Nurse Educator, Geriatric Nurse, and Telephonic Nurse Clinician. She has held a position as a Review Center Coordinator for nurses and midwives for 7 years. She loves teaching but fell in love with case management when she worked with a case manager in getting the resources for her son with autism 6 years ago. She would like to advocate for children with autism as her way of giving back for the support that she received for her son. She is pursuing her career and is planning to graduate next year with her Master's Degree in Case Management from American Sentinel University.
The CMSA Integrated Training Program provides multiple strategies to engage clients, stratify risk, and develop care plans to mitigate risk and help clients achieve improved health and well-being. Our training includes a review of "CMSA's Integrated Case Management Manual: For Case Managers by Case Managers," online learning sessions, self-study activities to prepare for Face to Face Training, and interactive practical application in a classroom setting. It also includes a pediatric component and working with autistic children. Our 2023 Spring ICM Training will be held virtually, April 4-6. Learn more and register at https://cmsa.org/education/icm/
The Autism Society
and the CMSA Today article "Case Manager for Children with Autism Spectrum Disorder: Told from the Perspective of a Mother and a Case Manager" by NICOLE BERMAN, RN, MSN, CCM, WITH MARY MCLAUGHLIN DAVIS, DNP, ACNS-BC, NEA-BC, CCM