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Seeking Insights on Support in Hospital Settings

T

toritava

New Member
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
 
Well I only know from experience as an adult, but I found several things helpful.

1. Limited visitors and when they did come short stays.
2. Access to favorite foods or drinks (for me hot tea)
3. Materials to pursue special interests/hobbies
4. Comfort items (For me a stuffed animal dog because I missed my dogs)
5. My own electronics to listen to recorded books/music (for me history and LOTR)
6. Things to brighten my mood (for me T-shirts and posters of the LIon King)
7. Regular walks around the ward if possible, probably dragging the IV along
8. A TV in the room
9. A small Fridge in the room
10. If at all possible a private room. If not Headphones or Earplugs to block out sound.
 
Tom said:
Well I only know from experience as an adult, but I found several things helpful.

1. Limited visitors and when they did come short stays.
2. Access to favorite foods or drinks (for me hot tea)
3. Materials to pursue special interests/hobbies
4. Comfort items (For me a stuffed animal dog because I missed my dogs)
5. My own electronics to listen to recorded books/music (for me history and LOTR)
6. Things to brighten my mood (for me T-shirts and posters of the LIon King)
7. Regular walks around the ward if possible, probably dragging the IV along
8. A TV in the room
9. A small Fridge in the room
10. If at all possible a private room. If not Headphones or Earplugs to block out sound.
Click to expand...
A lot in common but a few differences which I have listed below.

1. A vistor should be present as long as and as often as possible as long as it's someone I trust.
2. The tea sounds good but I'd like some fruit to eat as well.😁
5. The part in parenthesis doesn't really apply.
6. Same as 5.
8. Let's forget the TV. They become soooo annoying. 🙄

I would like to add that it would be beneficial if some nurses/doctors learned how to refrain from jerking a patient around by their injured limb.
 
Not all autism is the same.* (I am ASD1.) My only extended stay was for about a week in 1992[?].
  1. I knew why I was there (so I was able to cope with it).
  2. I could not sit up without vomiting (so routine pursuits were out of the question).
  3. And I was photophobic, so lights were normally kept low.
I have only had outpatient procedures since then, and I understood what to expect.

My (now 30yo) ASD3 daughter (in her outpatient procedures) had no clue why they were doing such odd things to her. She has relaxed more, generally, but takes the greatest comfort in my presence.

I get my flu shots side-by-side with her so she can see that they are routine and not just people picking on her.

*See Autism Subtypes...
 
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For me it's just a case of hating being shut inside in the airconditioning. Large complexes like hospitals have incredibly expensive power bills and one of the ways they save money is by recycling heated or cooled air a lot more than is really good for their patients - lower oxygen levels. I'm sensitive to the change and always find it more difficult to breathe in hospitals. That's not just hospitals by the way, large office complexes do exactly the same thing.

So for me the greatest comfort I can have is a door that leads outside, give me a book to read and I'm happy to sit in the carpark. I'm also a smoker which adds to that.
 
toritava said:
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
Click to expand...
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.
 
toritava said:
Right now, I just want to collect insights on what makes the whole process more comfortable
Click to expand...
If someone with ASD says that being crammed in with strangers is painful for them, it literally IS painful for them. Get them a very quiet and private room ten minutes ago.
 
Maybe some actual, serious assistance for somebody who comes to the ER while homeless, probably after trying to commit suicide because they've been homeless for so long? Like, I don't know, making arrangements for a hotel room somewhere, if not ssomething like a Habitat for Humanity house??
 
As someone who is considering checking into a psych hospital any day now, I'm definitely thinking about this question. I'll share a few points based on my last series of stays longer a decade ago:

The worst part of the hospital - especially the ER - is when staff doesn't tell you what's happening. I witnessed patients being deliberately lied to, and it caused me terrible agony just to watch. One example: A patient asked for a pen and was told that pens aren't allowed. The guard chose not to say that crayons are permitted, and that they have crayons in his drawer for this express purpose. I'm getting worked-up thinking about it now. They take people who are in distress, lock them up, and give them nothing to do, even when there are options. Reading is allowed, so why don't they have a few magazines around? What I can't deal with is the arbitrary nature of it. Nurses did give their used magazines and newspapers to patients, but that just leaves it to availability and the whims of who you happen to ask. I begged someone to give me something to read - even something ultra-boring like a privacy policy or an unfilled form - and was denied.

I'm sorry for exploding. When calmed, I'll try writing some more.
 
It's not smart for me to delve further into those memories at the moment. I'm tentatively planning on trying to get admitted today. If it happens, I'll have plenty to say when I am released.
 
Cutesie said:
The worst part of the hospital - especially the ER - is when staff doesn't tell you what's happening. I witnessed patients being deliberately lied to, and it caused me terrible agony just to watch. One example: A patient asked for a pen and was told that pens aren't allowed. The guard chose not to say that crayons are permitted, and that they have crayons in his drawer for this express purpose.
Click to expand...
As a registered nurse and a paramedic, I find this behavior to be rather dispicable.

I have worked in the ER, and there are times and occasions when--due to being overwhelmed--the patients may not get all of the resources and/or attention that they are entitled to.

Even so, this does not excuse the behavior of a type of medical professional that I call a "petty tyrant" . . . which is my name for a bully who utilizes their position of authority to make a patient that much more uncomfortable by denying and/or delaying services and/or resources for the sake of petty sadism.

Such people (and I've known many!) often use social, procedural, or religious values as an excuse to be a bully toward a patient with the facade that it's done for the patient's best interests.

Nurse Ratched (in One Flew Over the Cuckoo's Nest) is an example.

We are trained--as nurses--that it's wrong to validate a client's delusions. My idea is that some nurses either misinterpret and/or spin this principle to justify the idea that it's wrong to accommodate an autistic person's needs for certain types of clothing or blankets, as the problem with the sensory texture is "all in your mind."

So, accommodating autistic needs is "validating a delusion."

This behavior is a kind of covert gaslighting, and the autistic patient is often powerless and without recourse to resolve this issue.

And then this leads to a meltdown, which exacerbates the ongoing problem.

If anyone disagrees with me, then please call me on this. I want to hear everyone's thoughts.
 
The worst thing about hospitals for me are two things:

- The lighting - overhead fluorescent lighting is an unbearable sensory sensation for me and normally I wear sunglasses or sleep masks. I would need both whilst in hospital, possibly some extra dark sunglasses because the overhead lights are typically so bright in such places.

- The staff. I have found a lot staff to be unhelpful when I have been to different departments of hospital, as an outpatient. Sometimes the staff are even arrogant and dismissive.
 
blitzkrieg said:
The lighting - overhead fluorescent lighting is an unbearable sensory sensation for me and normally I wear sunglasses or sleep masks. I would need both whilst in hospital, possibly some extra dark sunglasses because the overhead lights are typically so bright in such places.
Click to expand...
I agree completely.

When I was in college for the first time over 20 years ago, I got a failing grade in chemistry lab because I wasn't allowed to wear dark glasses. I had trouble distinguishing color changes in solutions and sediments because of the flourescent lighting.

I got very angry and told off the professor (I said he was an idiot who was so stupid that it would take him an hour to make Minute Rice) because an albino student was allowed to wear dark glasses, but I wasn't allowed to because I "had no legitimate medical need."

There was a drug problem on the campus at that time, and the professor liked to check students' pupils, as he didn't want anyone who was using drugs to handle bunsen burners, corrosive acids, and caustic alkalai solutions . . . and I was actually sympathetic toward this.

Another part of this problem is that some of the symptoms of autism are similar to the symptoms of opiate abuse, so he may have thought that I was using drugs (I wasn't).
 
@Kevin L. In actuality, autism can cause dilated pupils too. I have had this happen ever since I was tiny. As a young child, I frequently heard about how dilated my pupils could be. In fact eye doctors have skipped using the drops to make eyes dilated on me before due to my eyes already being dilated. I do NOT use drugs either and as I said it happened alot as a very young child.
 
Here is a video by an autistic YouTuber about the eye dilation part. I definitely find this symptom relatable, though when I was little we had no idea what the cause was.

 
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