*Fluctuating Functioning Levels - 1st responder training*

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Since we have been talking about fluctuating functioning levels on another thread I wanted to go ahead and start with this topic. If you don't understand what first responder training is, please look at my previous thread which is surrounded by asterisks and that will explain this project.

One issue that I find difficult with hospital staffs and first responders is that even if I tell them I am Autistic, they do not understand that my functioning levels can dramatically change at any moment from super high functioning to super low functioning or even non functioning and even to the point of complete catatonia depending on what my brain is processing at any given moment. I can also go from being a super intelligent, eloquent, articulate 52 year old who appears completely nt to a bumbling, stumbling inarticulate 4 year old at the drop of a hat. I can also lose the ability to speak or move by body at any moment if I am under extreme stress and the functioning can come and go from being able to speak or move to not or being able to comprehend and communicate as an adult to dropping to the processing and comprehension and communicative skills of a toddler. This can happen under stress for me or in periods of total contentment and relaxation. Because I, at first glance, appear so high functioning, people expect me to be very high functioning across the board so anytime I start to lose functioning in any area, whether it be physical, emotional, proprioceptive, or cognitive or in any other area, they immediately start to question if it is real and most often times I am accused of faking.

They also do not understand that 99% of the time that I am dealing with them, especially if the police are involved, I am going to be anxious and scared and experiencing the event as a four year old because that is the level at which I cap emotionally. So this is very confusing to them when my functionality changes so dramatically and so quickly so they assume that I am faking and tend to punish me more for it and that creates a vicious cycle because the more I am stressed and afraid or the more I am bullied or threatened, the worse my functioning abilities get.

I have shared some specific examples in the other thread and I am very willing to share more here as well to illustrate how I am affected. But I have to go to bed right now since I have to get up super early in the morning. But I wanted to get this out quickly to start this dialogue. Please, as many people as can relate to this, please respond. The more voices and examples we have, the better we can train the first responders to treat us well. Thank you.

Yes, I did go to bed but I got up to write one more thing here and then I am really going to bed. What I want first responders and ER staff to understand is that my functioning fluctuations are very real. I want them to be able to be flexible in their thinking and to respond according to however I might change, to go with the flow if you will. If they don't challenge the changes and just kind of slow down and just go with whatever level of functioning my brain is presenting at any given moment, that will help me feel safe and at ease and the fear and anxiety will go away. The situation will deescalate and they will be able to converse with me easily. If I start talking or acting like a four year old, they should respond to me with the gentleness, patience, and care that you would use with a four year old. If my speech deteriorates or if I lose the ability to connect with my physical body, they should respond with compassion and soften and be very gentle. I am extremely vulnerable during these times and have no ability to defend myself or protect myself at all. The softer and more gentle they can be, the better the situation will turn out. I am not a violent person, I have no aggressive tendencies in me. So I am never a threat to them. So the calmer they can be and the more understanding they are and if they can believe that my fluctuations are real and just respond calmly and gently as I fluctuate, I will then feel safe and all will go well. And if I do become catatonic, a gentle response and gently helping me by holding my hands or arms in a non threatening supportive way will help me be able to regain connection with my body and for movement to return. The same is true for loss of speech. Gentleness, compassion, and patient caring are the keys to help me come back. The more I can relax and the safer I feel, the quicker I can recover.

I also want first responders and hospital staffs and even crisis workers to know that if I am in 4 year old mode, they should speak to me too formally. Even in adult mode, for me, personally it is better to not be too formal or too professional when they are talking to me. I, personally, do not respect uniforms or titles. Just because someone is in uniform or has a title of doctor or crisis worker. those things mean nothing to me. I respond to kindness, gentleness, and respect. I also, personally, will not respect a police officer or a medical or crisis worker if that person is not worthy of respect. I don't see uniform or title, I see character, integrity, and knowledge of one's job. If a doctor or police officer tells me something that is idiotic or that I know is not true, I will challenge him. I am not being disrespectful or defiant when I do that, I am simply stating that the facts are facts and a uniform or a title does not mean that you can alter the facts. I also expect police officers to know the laws and to follow them. I know what the sound ordinances in my city say. I expect the officers to support them and not to tell me things that are not true. I also do not respect officers telling me things like they can take my driver's license away because I can't handle the flashing lights on their police cars when I am pulled over. I know they cannot do that. I also will not tolerate doctors telling me idiotic things. I am not defiant by nature, but if authority figures and first responders want my respect, they need to act as if they are worthy of it. Just because I am Autistic does not mean that they can say whatever nonsense they want.

Another thing I want medical staff and first responders to know, especially in a hospital setting, is that the sensory changes from going from a room to a hallway, or from inside to outside, or from one room to another, can be massive and can dramatically change my ability to walk, talk, comprehend, or communicate. Many non Autistic people do not realize that the lighting changes, the floor patterns, the wall colors, the movement and sound changes from people or equipment, the smells, and all sorts of other things can change tremendously from one room to another or from a room to a hospital hallway. I also want medical staff to understand that the speed at which they have me walk with them or at which they push me in a wheelchair really matters. I can actually get sick if we move too fast. Another issue that I want medical staff to be aware of is how loudly they are speaking and what their conversations actually are. I can really get overwhelmed in an ER room if I hear all the conversations the nurses are having about their boy/girlfriends and social lives. This is a problem for me and I often have to ask for earplugs just to not have to hear all the chit chat that they are having with each other because it is very draining to me.
I also want first responders and hospital staffs to understand that I see things much bigger and closer than they are especially body gestures like hand gestures. I spoke to my neurologist about this and she said that that is actually an Autism thing so it is possible that others of you have the same thing and possibly may not even realize it. So it is very important that they are very careful with their hand gestures and how close they stand to me because all of this can be terrifying for me. Also the volume and speed at which they speak to me should be soft, slower, and non threatening at all times especially when I am in child mode or when I am losing the ability to speak or to move.

I find it hard when doctors don't understand my sensory issues too. Some of the equipment they use can be repetitive and irritating (like those automatic blood pressure machines that beep) and some is too loud (like CAT scan and MRI machines). I've had to have scans redone before because I couldn't keep still because of the noise, and couldn't communicate the problem.

My pain response is really weird too. Some things that seem to hurt other people a lot, like sprains or pulled muscles, don't bother me as much, but other things that aren't a huge issue for most people, like getting an IV inserted, are excruciating. Just having recognition from the medical professionals that my pain tolerances may seem strange or unusual and aren't a sign of anything deeper would be very helpful.