Hi everyone,
I’m currently working on my Bachelor’s thesis, which focuses on the needs of children and adolescents with Autism Spectrum Disorder in hospital settings, both before and after interventions. Right now, I just want to collect insights on what makes the whole process more comfortable. Do you have experiences with specific strategies, routines, or accommodations that made a hospital stay easier or less stressful?
I'd like to get a feeling on what is happening in hospitals in such situations.
Negative examples are also welcome!
Best regards,
Tori
Hello.
I believe I can provide some insight here, as I am a high-functioning autistic person, and also an ex-paramedic and am also currently licensed as a registered nurse.
I am also less than 2 semesters away from completing my BSN.
With these points in mind, please consider the following:
1) The emergency department can be utter torture for an autistic person with sensory issues. Flickering flourescent lights, people yelling and screaming, odors of body fluids (such as vomitus, urine, etc.), odors of chemicals (like bleach or iodine), the textures of the cheap sheets and blankets, and so on can be very overwhelming. The "meltdowns" (a term that I resent) that are precipitated by this environment can cause medical staff to "Baker Act" (hold a person for an involuntary psychiatric examination) an autistic patient who is in this situation.
2) Staff in hospitals are usually not sympathetic toward autistic needs, as an autistic person with certain needs is often perceived to be "entitled" . . . which has happened to me many times. I have trouble understanding certain things due to my social blindness, and when I ask for clarification, I'm often told that " . . . if I'm smart enough to be a paramedic, then I'm smart enough to know how to not be autistic," or "The whole rest of the world understands, so the only reason why you don't understand is because you choose to not understand." As an RN, I believe this thinking comes from our mental health training where we're told that it's wrong to affirm a patient's delusions, so this means that we should not accommodate an autistic person's sensory issues because these sensory issues are "just in your mind."
3) Many of the symptoms of autism resemble opiate/drug use, so we aren't entitled to the same degree of pain control as other people because we are "drug seekers."
4) I--along with many other autistic people--have a degree of facial recognition blindness (prosopagnosia). This sometimes causes me to confuse the names of nurses and other medical staff, which leads my co-workers to assume that I am a racist. The presumption of racism happens when I confuse staffs' names, and then I hear "All us Black people look alike to you?" White people, Hispanic people, Black people, and Asian people do, indeed, all look alike to me because of my prosopagnosia. I have stratedgies for dealing with this, but this issue becomes worse when--in a medical setting--everyone is wearing surgical masks. When I check peoples' name tags, women believe I'm a pig because they think I'm looking at their breasts.
5) My tendency to take instructions literally often gets me in trouble in a medical setting. I can give you plenty of detailed info about this, but it would require a private communication because it's a long story.
6) Patients and co-workers sometimes perceive me as deceptive and untrustworty because of my lack of eye contact. This is also relevent to my sensory issues, as I'm not allowed to wear tinted glasses, while an albino medical technician is allowed to wear dark glasses because he has a medical need . . . but my autistic sensory issues don't qualify.
7) Hospitals are set up to provide Kosher food, diabetic food, and low-salt food . . . but don't have provisions (or staff education) to provide meals that are consistant with autistic sensory issues.
I could go on, but I'm sure you see my points.
Please private message me if you want more details, or if you feel I can be of further assistance.
