By a scholarship recipient
I am writing this autoethnography because unfortunately not everyone in the medical field realizes that autism does not follow normal communication rules which I feel is not ethical. I have experienced problems time and time again with communication at medical facilities. The communication about my autism I feel should start with the receptionist finding out my needs, followed by who is treating me and understanding my communication style. It is often very difficult for me to decode the scale from 1-10 to describe how much pain I am in and they do not understand that I do not get it. Sometimes it even feels like they need diversity training and to learn about other-knowledge when treating patients who are autistic. Even though I have had many bad experiences my health is important and part of staying healthy is going to the doctor.
Usually the first interaction with a medical facility is the receptionist and sometimes the doctor and nurse/assistant can be around depending on the place. Sometimes I have been in situations where my mom has been able to inform the staff ahead of time how I need them to communicate with me, other times this is not the case. I often do not know who I need to tell or when I need to tell them I have autism and how to explain what I need. When I go to the dentist the staff all understands my needs because I have been there awhile and my mom was able to tell them that I need them to explain what they are doing to me as they are doing it. When I went to the Emergency room last year I did not have staff with this understanding and at the beginning one of the nurses just grabbed my hand and was attempting to attach some device I did not recognize. So I asked her multiple times, “What are you doing?” but she just ignored me, so I pulled my hand away. My mom had to then explain my autism and I needed her to explain to me what she was doing. It turned out she was just attaching the oxygen sensor to my finger. During my research I came across Children’s Hospital of Philadelphia. One of their tips is when an appointment is being made is to find out if the patient has autism and ask what accommodations will need to be made for them (The Children's Hospital of Philadelphia, 2017). I feel that if the medical office can even communicate between each other it would be helpful instead of always explaining my needs to each person that sees me. One study I read included even the front desk workers and 92% of the staff workers think autism training would be helpful (Lucarelli et al., 2018).
It is frustrating when I get asked questions that I just do not understand. For example, “What is your pain level on a scale from 1-10?” Some people have gone as far as asking if I need to point to a face, as if that would be easier. If they know and understand anything about autism they would probably realize that most autistic people have a really difficult time with facial expressions. After reading about someone else having problems with this it got me thinking (Nicolaidis et al., 2015). It would be helpful if someone could come up with something like the labor pain stimulator, not that I want to experience more pain, by being hooked to some simulation monitor to compare levels of pain. For example, it would be like a visit at the eye doctor when they flip lenses and ask between two options which is better. According to Doctor Tea, not having accommodations can cause traumatic experiences (Boada & Parellada, 2016).
When I was little and needed stitches I remember the Emergency room staff tying me down and multiple people holding me so they could do the procedure on me. When I was six and needed surgery I was told before the operation that there would be no needles, but I would be given an intravenous solution. Before the surgery I was not given anything to make me kind of sleepy, and they took me away from my mom. I remember holding on tight to her and the nurse pulling me away. When I was on the bed kicking and screaming, I remember at one point someone saying, to forget whatever people were doing and to hold me down until they got me asleep. After the procedure, I saw the marks in my hand from where they had an intravenous solution and blood bottle. These experiences have traumatized me a ton. When I was 19 I had to have my finger pricked and between the nurse wiping my finger and poking me I freaked out and pulled away and she raised her voice at me. My mom had to calm me down and request a different more experienced nurse to do it. Since then I had to get my Tetanus shot. I requested the good nurse and when she came in with the other nurse to try to train her, that freaked me out, and I told her to leave. One thing I learned from this experience is I need trained nurses who have other-knowledge with someone who freaks out. Though it would be better when they train someone to ask first to see if it is okay, or better yet have someone not traumatized pretend to be in a training session. I do agree that reducing trauma helps someone continue to go to the doctor (The Children's Hospital of Philadelphia, 2017). Most of the time the staff are not very patient in taking the time I need.
Going to the doctor is important even if someone has had traumatic experiences. It is important for communication to happen starting with the receptionist. After, realizing that people with autism might not have the same communication skills. Finally, not only is it important to be patient and tolerant, but to not do unexpected things during a visit. Having people in the medical field understand how people within the autistic community communicate can go a long way in making positive experiences.
Boada, L., & Parellada, M. (2016). Seeing the doctor without fear: www.doctortea.org for the desensitization for medical visits in Autism Spectrum Disorders. Revista de Psiquiatria y Salud Mental (English Ed.), 10(1), 28–32. https://doi.org/10.1016/j.rpsmen.2016.09.003
The Children's Hospital of Philadelphia. (2017, June 15). Tips for More Positive Office Visits for Patients with ASD. Children's Hospital of Philadelphia. https://www.chop.edu/news/tips-more-positive-office-visits-patients-asd.
Lucarelli, J., Welchons, L., Sideridis, G., Sullivan, N., Chan, E., & Weissman, L. (2018). Development and evaluation of an educational initiative to improve hospital personnel preparedness to care for children with autism spectrum disorder. Journal of Developmental and Behavioral Pediatrics, 39(5), 358–364. https://doi.org/10.1097/DBP.0000000000000580
Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., … Boisclair, W. C. (2015, October). "Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum. Autism : the international journal of research and practice. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4841263/