Can any body help

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Hi, I am new to the site and trying to make sense of being told that I am probably on the spectrum. Also, struggle a bit with anxiety and depression, well perhaps quite a lot. With that in mind, this is a copy of a letter I sent to my hospital, I ended up cancelling the appointment how do other people manage?

A message to my healthcare provider

A Hospital Appointment and what it is like.

I am a 54-year-old man who has been told quite recently that I am probably autistic and am now waiting for a formal evaluation. I find it very difficult and embarrassing to try and explain how I feel, and if you were to ask me I would have great difficulty telling you because it takes me a long time to recognise and then find the words to explain it.

By the time you read this, I will have worried about finding a parking space but found one, then worried about which entrance to use, but found my way into the hospital. When I walk in it is like walking into a wall of noise, light and smells that I am not used to. I feel completely overwhelmed, and I begin to feel that I can't cope there is just too much noise The smells are just too overpowering there are people everywhere. Maybe I should go back to the car where everything feels familiar and quiet and I will begin to feel safe again.

I proceed to the information board to try and work out how to get to the right department. I stand in front of the board, and I look and look again at the words on the board. I read them but don't seem to have enough room left in my mind to understand and make sense of the simple information in front of me. I think to myself, don't stand here too long and don't pace because someone might notice you.

And then on top of everything else, I might have to talk to someone.

If I do have to talk, don't forget to make eye contact but not too much, don't fidget and whatever you do don't wring your hands. Replay everything thay say in your mind at least twice so that you are absolutely sure you understand what thay mean and you won't say the wrong thing. And then somebody says “You are looking a little bit lost” How did thay know?

I should have tried harder to look relaxed, How can you be a little bit lost, that makes no sense. You are either lost or you are not. Think, think, think harder what are thay trying to say? I get it I understand, but now I seem slow to respond, I show them the form and they explain where to go. Thay explain very very slowly I feel stupid and embarrassed. I look down the corridor and there are people everywhere some walking toward me and some away, I walk close to the wall I am frightened someone will bump into me. I hate being touched by strangers it goes through me. I have only walked a few steps and have already forgotten what thay told me. I stay close to the wall and decide to keep walking.

Somehow I get to the right department, The woman sitting by the door has really strong perfume, I hold my breath and walk past her as quickly as possible. I can still hear the coffee machine at the entrance it is really loud, the steam jet is too close to the bottom of the milk jug, the pitch is really high and it hurts. Phones are ringing and everyone is talking how will the receptionist ever be able to hear me? I give my name and show my letter.
She seemed to hear me without any problem but I am barely able to hear what she says, how do thay do that?
I sit in the corner as far away from everybody as possible. My name is called I am asked if I understand the procedure and if I have any questions, I make a superhuman effort to sound as calm and collected as possible.
I have read everything I can find in great depth and detail about the procedure I am about to have. I know all the statistics, indications, contraindications and possible complications and that's all fine. All this is in an effort to try and alleviate my anxiety, but I can't imagen what it will feel like, and whether I will be able to cope with this new feeling.

Now all I have to do is have a colonoscopy. I am so frightened, I am frightened that I will panic during the procedure and hurt myself or worse still someone else, I am not even sure that you will ever see this letter or me for that matter. I am so anxious I have even contemplated self-harm in an effort to try and cope with the anxiety. I have reached out for help but not with much luck, I find the phone very difficult. I have an unfortunate history of struggling with medical procedures and have had several very bad experiences even leaving a urology department once unable to pass urine and unable to let them reinsert a catheter. I lasted another two days and then managed to re-catheterize myself.
Thanks to u tube and Amazon.

I am not worrying too much about the results of tests. Serious or not. Whatever the results I will deal with it. So long as the options are laid out clearly I will have no difficulty in researching any possible condition and making an informed decision.

Very often what seems like a difficult decision in life is simply a matter of weighing up the lesser of two evils.

I can't wear a mask but would this help?

I get similar issues.

When you can't think because of the smell triggers you could be experiencing a type of shutdown which is why you can't take in information. (There are different types of shutdown. For me I call it a partial shutdown (Because when I fully shut down I lose use of my limbs and eyesight and hear loud tinitus. Tinitus starts in a partial shutdown for me. BUT each persons shutdown experiences can be different.Some just go non-verbal).

For starters please don’t hurt yourself I have to say that first.

I’m an autistic 17 year old AFAB I’m not 100% sure how to help you but I know sometimes just having someone listen can help. If you have a person you trust who can go with you they can help with the feeling of being overwhelmed I have a friend who often helps me with that if you don’t have anyone then a few tips could be bringing a small comfort object (I know the idea of a comfort stuffed animal or something sounds silly I’m not doubting your intellect or anything I just like to bring a stuffed animal to finals or exams so I have something to hold on to) it also doesn’t have to be a plushie it could be a smooth rock to hold in your palm if that’s more your style the idea is it can be grounding and might help with stress. As for the worry of freaking out during the exam the best I can offer is to ask the doctor to talk you through it.

Lastly I get hospitals can be awful they are confusing and maze like it might help to practice a few lines ahead of time ie

“I’m looking for room 123 for doctor health guy can you help me find it?” If you say it enough times it will become second nature and might stay with you while overwhelmed

I hope this helped

you can ask for help with coping with anxiety before any procedure, often they will give you something to help stay calm , a pill or liquid... you can talk to whoever set up that procedure's appointment ( emails might do the trick) or whoever referred you/gave the order for testing, etc. Anxiety during procedures can be managed many ways, help is available if you ask for it. hope you get a response from somebody on your health care team and can work with them to work out details for your care.

Hi and a warm welcome to you . This may help if you have no-one to go along with you as a support, or in conjunction, with a support person …

‘My Health Passport’ is a resource for autistic people who might need hospital treatment.

The passport is designed to help autistic people to communicate their needs to doctors, nurses and other healthcare professionals. It was developed by Baroness Angela Browning – an National Autistic Society Vice President – in collaboration with The National Autistic Society.

It was independently reviewed in 2017 and updated following comments by autistic people and professionals about how they were using it or wanted to use it.

https://www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport

Welcome to the site. This is an interesting first post.

You have an extreme sense of sound, light and smell. These senses can overload you and cause trauma. Your reaction time is slow and you lose track easily during conversations.

You began taking about an operation. Wait a minute, what operation? Oh, a colonoscopy. I had that done a couple times. They put me out during the process. There was no pain. You wrote, "I am frightened that I will panic during the procedure and hurt myself or worse still someone else." If that is what you are worried about, just have them knock you out while performing the surgery.

I would recommend that whenever you go to the hospital for an exam that you have someone come with you if you can arrange it. They can help you get through the process.