Before you go • What to do when staying there • Self advocate perspective
Hospitalization
A hospital stay can be stressful whether planned for a procedure or an emergency. But both are easier to handle with some planning.
Before you ever need to go to the hospital
1. Be aware of the different hospitals in your area. A few things to find out about each:
- Which ones are in network with your insurance?
- Does your primary care provider and/or specialists have admitting privileges?
- Does the hospital have programs for adults with disabilities?
This information will help you decide where to go first should you ever be in an accident or suddenly become sick and need to go to the emergency room.
2. Prepare an emergency bag or two. It should be waterproof and kept by your front door and/or in your vehicle. Among the things on this downloadable checklist of what it should include provided by the Adult Autism Health Resources of Harvard Medical School are:
- Copies of medical insurance information
- Earplugs, earbuds or headphones to block out noise
- Reading and writing material (to take notes)
- Change of socks and underwear
3. Finally, you should make sure you let your family members, emergency contacts and primary care providers know you have a preferred hospital and an emergency bag.
- Talk to your PCP and make a plan for emergencies and hospital stays. For example, you can ask if your PCP would be willing to speak to your treating doctor should you be in the hospital or ER. By requesting that the treating doctor call your PCP, you can ensure your needs are being clearly communicated, doctor-to-doctor, by someone who knows you personally.
- Make sure your medical records include a contact person or people permitted to receive medical information.
- Keep an up-to-date document with a list of medical conditions, medications, allergies, and names and contact information of your PCP and specialists.
What to consider when staying in the hospital
- Ask if you can be placed in a private room as an accommodation.
- In most situations, patients can bring someone along for appointments, tests, procedures, hospital visits and treatments. You might need someone to help you communicate or take notes for you, complete daily living tasks or navigate the process. If a staff person denies access to your support person, tell them that you have a disability and need an assistant. Most places have policies to allow this even when a visitor is not normally allowed.
- Most healthcare centers and hospitals have a social worker on duty or a "patient ombudsman" whose job is to help you advocate. A social worker or ombudsman can help you understand your rights, make a complaint if necessary and get the help you deserve.
- Doctors often work in groups or teams based on their specialty and take turns seeing patients in their rooms each day. This means there will be a lot of people coming and going from your room, and many of them will be unfamiliar to you. It can be hard to keep both people and information straight, especially when you’ve been fast asleep or aren’t feeling well. Don’t be afraid to ask providers to identify themselves and to clarify if you don’t understand something. It can be very helpful to have a support person present when doctors do their daily rounds. It’s also a good idea to take notes.
- When it comes to any disability-related needs or accommodations, be prepared to repeat yourself a lot. Think about how you can communicate your specific needs in this situation so that the doctor and staff can better support you as an individual.
Self-advocate perspective: Having your needs met in a hospital
By Lydia Wayman
As an autistic person who has experience with specialists, hospital admissions, and trips to the emergency room as a child and an adult, I have seen the best and worst of the medical system. So, how does someone with a disability that affects their ability to communicate, process sensory input and handle change navigate a system that demands these very things when the stakes are at their highest?
Not easily. But there is a lot to be said for preparation and practice, and while not every autistic person who finds themself in a hospital has the benefit of many years of experience, I hope that others can learn from some of mine.
Communication is key in any medical interaction. In many cases, this communication has to happen in a scenario that is the opposite of accommodating for many autistic people. Stress levels are typically high and sensory regulation is impossible. Routine is disrupted. Support people may or may not be present.
As much as possible, I try to deal with doctors who are familiar with me and how I communicate. I choose to see doctors who understand both my challenges and my strengths and don’t see the involvement of a support person as a reason to treat me with less respect. Unfortunately, you can’t pick your doctors in the hospital or emergency room, and I have been in situations where my safety was put at risk because of communication issues and how doctors viewed me.
During a period of time when I was frequently in and out of the emergency room and often being admitted, I realized that simply having autism listed as a diagnosis in my records didn’t give the doctors much useful information. I created a half-page document that explained how autism affected me in the context of the few minutes they would spend interacting with me. It included information that would help them help me, like the fact that I need extra time to respond to questions, that communication is difficult or impossible when I’m overstimulated (including when someone is touching me), and that my mom may sometimes help by “translating” but not by speaking for me.
This document was a good start. I printed out multiple copies and brought them to the emergency room or hospital with me. However, due to the number of providers involved in my care and a tendency for them to glance at the paper and then leave it behind, I could never be sure who had seen it. I still felt a lot of anxiety each time I had to go back to the hospital. Since that was a constant risk for several years, this anxiety was affecting my daily life.
I saw an article about an emergency room physician who worked at the hospital I went to and had recently been appointed to a leadership position in research. It mentioned his work studying the experiences of autistic children seeking emergency medical care. Since the hospital had no real support in place for autistic patients, my mom suggested we try to get in touch with him about ways of making these visits less overwhelming and safer.
When my mom sent an email on a Friday afternoon, she did not expect him to call back that evening. This doctor first asked to see the document I had created and then asked if it was okay if he discussed it with the medical director of the ER and the director of nursing. They were able to put notes in my electronic medical record. Included among them: Rather than having a team of doctors enter my room, one person should come in at a time. When possible, the lab and x-ray technicians should come to me in my room. It also notes that the hospital gown is a major sensory aversion for me.
While I have not been to the hospital in several years, the reality is that there will almost certainly be medical emergencies in my future. Knowing this information exists in my medical record history for anyone treating me to access eases the burden of making my needs known. This allows me to focus on what really matters — getting the medical attention I need. The reassurance that I have a safe place to go, if and when I need it, gives me peace of mind.
