How do you deal with the ER,Doctors, Dentist, Hospital ETC

Post Reply New Topic

hi!! I have HFA and also work with and volunteer for an Autism center here in New York

I am putting together a tip sheet, and awareness sheet for Autism for Hospitals/Doctors. I work with an Autism Center in spreading awareness specially with adults that are on the spectrum both high and non verbal.

I would like your tips, or what helps you when you go to an ER or doctor in calming you when the anxiety kicks in. Also how can the nurses, doctors or hosp staff help you so that it is a safer or easier for you to deal with what is going on as they check you.

anything you share that is private such as names, ages, etc i will not share. only your ideas or tips that help you to better deal with the situation. I appreciate all your input in helping me to help others like us

For me if i have to go to the ER i normally have someone with me, as i tend to become non verbal in scary situations. If i don't have anyone with me having a card or something in my phone that i can show the staff helps to explain that i have autism and need help.
I also find if i wear my sunglasses the bright lights don't hurt my eyes as much as they tend to bounce off the tile floors in the hospitals.

I rarely have health problems that require the doctor, but when I do have problems, I actually really want to go to the doctor to get them fixed.
My motivation for communicating with the doctor is very high due to intense desire to get rid of the problem.
Mostly, I clearly state what is wrong, answer questions clearly to emphasize the key points of what is wrong.

for me i am always at the ER due to my asthma,

no matter how times i have to go when it gets bad, the place just does not work well for me. The lights, the noises, everything hits me at once. So for me having sunglasses to wear, or ear plugs helps.

most of the time i can explain what is going on or what i feel, but sometimes it comes out all jumbled when nervous.

White coat hypertension!

Meditation and mindfulness. If that doesn't work, repression and dissociation.

When our children were younger we joked about getting "frequent visitor" points for the ER. I learned that as with many other things if the stakes are high enough I *can* make it through almost any sensory experience using the techniques above.

However, there is *always* a price to pay later. It's not trivial and the worse the experience, the more repression and backlash afterward. Probably not actually healthy, but it works.

Doctors, dentists are more/less okay for me when someone is with me. In the Emergency room: forget it...completely overwelming sensory overload, every time. I would only attempt to endure this torture if I had to.

(Scale 1-fine, 5-no way)

Hospital (out-patient) - Go there often for medical reasons so I am perfectly fine as it's a quiet waiting room == 1/5

Hospital (in-patient) - depends on health, last time it felt like a prison, just couldn't wait to get out, even if it was all high-tech it still felt horrible with all the old people groaning as if they wanted their life to end, was a living hell 5/5

Doctors - slightly out of comfort zone with limited seats in waiting area which forces you to sit sandwiched in between people == 3/5

Dentist - most are just not easy to get along with, they lecture me on and on about stuff I already know, in this regard I think someone else should be there to voice my opinion == 2/5

When I was really young, like 6 or 7, first I went to a dentist. I was excited about losing my tooth. Lack of my parents' presence? Injections, odd noises, and things that are practically happening on my mouth? I just laugh it off, waiting for that ice cream my mom promised me. 1/5

Doctors? I bug them with questions. Injection or no injection. Seats or no seats. 0/5

ER? Hm, about 5 months ago was my first time. I was so bored, I stood out of the bed (with a 40 C fever, fatigue, headache, and a newly IV hooked on me) watched a neighboring patient who happens to be a young woman on labor. .. She literally gave birth on the spot, then the next thing I knew people came and I went back to my bed. 1/5?

And what I did as an out going patient involves randomly exploring the hospital buildings and grounds. Only to greet my impatient mom back to my room, and raced people out of the building. Yes, I'm such a child.

Gained Number Post Count (1).
Lose Time (n).

Lose more time here - Updates at least once a week.

I am not bothered much at all by going to the doctor, dentist, or hospital. I tend to have much less anxiety about it than most people, actually.

The dentist doesn't bother me because I rarely have any kind of dental problem. I just get my teeth cleaned.

The ER and hospitals can be stressful because of a lack of privacy and physical discomfort if anything. The gowns are too large and become tangled around me so that I can't become comfortable. The beds are angled strangely and so I usually prefer the chairs in the room. The lights in the room are usually too bright. I prefer the rooms with doors for privacy and to block out sound. I wear my earphones and listen to music if I am feeling anxious.

All these situations are awful and I cannot usually go alone.If I do it's easier to write down something to read to the doctor.If the doctor or whoever asks direct relevant questions it makes things easier.I hate it when lots of different people ask confusing questions when you have already explained especially in the accident and emergency department. The lights, noise and smell in there also means I only go in a real emergency.I cannot bear the dentist at all.

I think Scorpius14's rating comes pretty close to my own experiences.

I'm not bothered by hospital as long as I'm not a stationary patient, which I don't consider pleasant at all!
So for occasional, 1/5, for stationary, 5/5. I especially would have wished to have a private room when I was there. The lack of anything interesting or activities I would have actually had any energy for (that in itself was a major problem - only had a shared TV with few channels) didn't make it any better. I felt like a plant. But at least they did their job well and in the end it's not supposed to be a hotel either.

Limited seats at doctors are one issue, the coughing in your immediate private space and occasionally the smell are another. I know they can't help it, but it's still uncomfortable. Hospitals have more space at least. While not literally scary, I'd probably rate it 3/5 too. It's uncomfortable.

With my dentist I'm fine, I like him a lot as he's a very sympathetic person. Of course when something has to be done it's not always the greatest pleasure, but it doesn't take long either and he's a very reasonable man who explains why something has to be done and how it has to be done without going into lectures and repeating himself, something which doesn't seem to be all too common, unfortunately. I guess it's more or less pending between 1 and 2/5.

In all of these cases, I find the wait pretty tiring though, much less so the treatment.
I just have nothing to keep myself busy with and cannot disconnect/distract myself from witnessing unnecessary talks between other patients by listen to music as I have to be aware of the moment they call for me. I find the common choice of magazines pretty boring too.
My suggestion:
Some kind of radio-headsets at each seat that get (softly) muted when they call the next patient - ideally playing the announcement through all headsets too - would be a neat addition to waiting rooms! Obviously that would be likely nearly impossible and an investition considered a waste by most.
Those waiting rooms that do have a radio playing have it very silent and people's talks, coughing, complaints and rustling of candies, snacks and the pages of magazines makes it pretty much pointless in my honest opinion. Furthermore it doesn't mute my environment, obviously.
Of course that can be solved by taking another person with me so it can pay attention to the announcement so I can listen to my own music on my player to disconnect a bit. In my case, it's rarely possible though, others are mostly busy or don't have time when I have an appointment.

Ugh, I avoid going until I have too. I worry about my health a lot, I'm sort of hypochondriac so avoidance plays into that.

If I go to the hospital I generally have massive anxiety, same with the dentist. Doctors is sometimes good and sometimes bad.

I have to be put on anxiety medication ahead of time for either one. I always get anesthesia during any dental work.

I have a history of a heart arrythmia (AV node re-entry techycardia). This has meant many ambulance trips to hospital and many times I've had my heart stopped and restarted by the doctors to reset the rhythm. (It runs at between 180 and 220 bpm so it has ot be slowed down before I get heart failure.) The AVNRT used to happen randomly so I couldn't prepare ahead of time and when I was cardioverted (heart stopped and started again) it was done in Resus with lots of staff around the bed. I found all of this really difficult. Some of the difficult things were:

1. With lots of people staring at me I tend to close my eyes but they need my eyes open to know that I'm not losing consciousness, so they always say 'open your eyes' all the time.
2. There is lots of noise in resus - the machines beeping away, the staff organising things, announcements ove rhte PA and the rooms are usually without curtains or carpet so the noise echos and reverberates off everything. Also, you can't wear earplugs because they need to be able to speak to you.

At other times, for less urgent treatment the things I find difficult are:

1. Music playing in the waiting room.
2. Too many people too near me in the waiting room. (Some people have strong smells - everything from after shave to body oder.) Plus sometimes they sit so close they touch me and I don't like that.
3. When seeing the doctor I find it very hard oif one doctor contradicts another and veen worse when a doctor write to my GP and what they say in the letter is different to what they said in teh consultation to me. Sometimes I wonder if they're writing about the same patient.
4. When there are inconcistencies or when I am unable to explain somthing so the GP understands my frustration level goes really high and I find it hard to talk becuase of the lump in my throat where my body wants me to cry. Sometimes I do cry and sometimes I lose it completely.

(There has been one time when my noticing an inconsistenciy was very helpful to a safe outcome. One doctor went through with me what levels of a certain heart medication were safe for me. 18months later another doctor tried to put me on twice teh safe dose. I explained what the other doctor said and was told that if I continued to be awkward I would die of a cardiomyopathy. In the end we got a second opinion from the consultant and he said that I wouldn't die and I shouldn't take such a high does of the drug. When I went back to the specialists in London they said that the higher does could have been fatal. It's not all bad having ASD.)


So, the things that I do about this:

For eye contact during resusitation - I explain it to them and ask if there is a place on the ceiling I can look which is not near anyone's eyes. That way I can keep them open without the stress of eye contact.

There is nothing I can do about noise in A&E and the Resus room but if they were to put up squares of noise absorbing foam in various places around the ceiling it would massively help the accoustics and make it a more relaxing place for staff and patients.

In GP surgeries, having an alternative quiet waiting area where there are fewer people and no music would be very helpful indeed. Sometimes the noise and people in the waiting room bring me to tears before I even get to see the doctor.

I have been dealing with the contradictions in several ways. First I have to accept that not everyone remembers everything they say and when they recall things they often get things a bit wrong, even doctors. ALso I have to remember that I process language very literally and specifically but others don't so when I think they've got it wrong it might be a disparity between my language processing and theirs. Also telling each doctor that I have mild autism and process things very literally helps too, as does checking and rechecking that I have understood what they're telling me. This makes communication better and avoids meltdowns.

Hope this helps!