Strategies 0.2
Strategies I’ve developed over the years to cope with the autism I didn’t know I had – Part two
Questions
“There’s no such thing as a silly question!”
I’ve heard many people say this phrase, but not everyone truly believes it. I am a questioner, an enquirer, a seeker. There is so much I want to find out. When I learn a new fact and it intrigues me, I want to know more; I want to know everything about it; I want to know who, what, when, how, and why. Whether I am learning a new skill, a new procedure, or a new area of study, I want to know everything… now!
I use questions a lot in my life. In addition to using questions for learning, I also use them for clarification. I will double-check something just to ensure it’s correct. If an instruction or statement is unclear to me, I would rather ask about it than get it wrong. I often say, ‘Can I just check to be sure…’
However, I have been in many situations where people don’t like the questions. I think they feel insecure in the situation somehow, that I am questioning them rather than the learning or the procedure that is taking place.
Once, a situation that stood out was when I was in the high dependency unit after my first surgery. I had been there for several days, being looked after by some wonderful nursing staff. Although I was very ill, I was often awake. I would ask the nurses about the medication they were giving me, or what the beeping on the machine meant, for example. Every few hours, a few nurses would come round to turn me in bed. This was to reduce the risk of bedsores. Each time, they would patiently wait for me to be ready. They would fully explain what each person would do and how they would move my body. I would double-check this each time, and each time, they were patient with me. I felt very well looked after by the nursing staff. After I had been in HDU for five days, I was well enough to move to a regular surgical ward. I had a variety of tubes and wires attached that needed to be removed. In the morning, I had my central line removed. It can be a tricky procedure, but again, the anaesthetist who performed it explained it to me very well and put me at ease. In the afternoon, I had a new nurse I hadn’t met before. At medication time, I asked her about one of the tablets as it looked unfamiliar. I think I said something like, ‘Is this one for the pain?’ Her response was a gruff ‘Just take the pills!’ I was shocked, mainly because of how much her unfriendly manner contrasted with the excellent care I had received so far in HDU. A couple of hours later, the doctors came round and told me I was ready to have my NG tube removed. For those who don’t know, an NG tube (a nasogastric tube) is a thin tube placed through the nose into the stomach; it can be used for feeding or intubation. In my case, it was used to remove excess stomach acids, as I had been nil by mouth since the surgery. Anyway, the new nurse came along, and it was to be her task to remove the NG tube. I had never had this procedure done before; the tube had been fitted (is fitted the right word? Inserted? Installed?) during the surgery when I was unconscious. Of course, I had questions: what will it feel like? Should I breathe in or out? Should I hold my breath? Will you count down and then pull it out? Will it come out quickly or slowly?
‘I do know what I’m doing,’ she said with an angry tone and then just whipped it out. She pulled it out without warning or any preparation. I was in such shock. I felt violated and was so upset that I cried. When my mum arrived a bit later, I told her, and we actually made a formal complaint.
I share this story to show how different people respond to questions. Some can see the message behind the questions. Like those who teach my daughter and give her the space and time she needs to ask her many questions, recognising or acknowledging the anxiety they contain. Others see questions as a personal attack on themselves, believing that they, rather than the topic, are being questioned. The reactions of these people to others' questions can be damaging. Those who ignore my daughter's questions are as harmful as the nurse who physically hurt me.
Questions are the best way to learn. That is how we acquire knowledge; how we gather information from those who know more or know better. It’s also how we solve problems and progress.
Questions are also how we attempt to understand what is happening around us, how we make sense of the world.
Questions are how we try to gain some control of the world around us; if I understand it, I can try to control it.
If my questions are ignored, belittled, or disregarded, then you are ignoring, belittling, and disregarding me.
If I don’t understand what is happening around me and feel out of control, several things may occur; I might believe I don’t matter, which could impact my mental health and well-being; I might do something else to regain that sense of control, including acting in unexpected ways, which could also affect my mental health and well-being; I might conform to what those around me are doing, but never truly understand what I am doing or why, and this could influence my mental health and well-being. I’m sure there are more outcomes I cannot currently think of. None of these is appealing to me. I would not want myself, my daughter, or anyone else to live in this way.
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