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Very little care or empathy for autistic adults from NHS hospital staffBeing in the hospital can be a very stressful situation. This stress is further compounded by Autism and the issues that run side by side with it for us Autistics. In December of 2015, I was admitted to our local NHS hospital for a very excruciating pain I had in my side, which caused me no choice but to call an ambulance at 4am. As someone who has a very high threshold for pain and the fact that I didn’t want to call anyone out without “real” need, because it could cost a life made me delay my treatment. So I just lay or rather writhed in my pain and agony for 8 hours before I called for help. It took a lot for me to have to do this, to allow stranger into my home when I was at my most vulnerable, to allow them to touch me in order to access me and to keep everything quiet at to not alert my two sleeping cherubs upstairs.

Adam, was great, bless him. As I knew I wouldn’t sleep because of the pain and since I was being ill every few minutes too, he decided to lay downstairs with me to keep me company and keep an eye on me, as he too was worried too. He would have to take care of the children once I left, while the ambulance took me to the hospital as I was incredibly unwell. Being handled by so many strangers is quite a frightening thing. And being ill, repeatedly, outside just trying to walk to the ambulance was quite embarrassing, even for someone who doesn’t usually care what others think of me. I had also managed to lose so much fluid that I lost a stone (14 pounds) within 24 hours from the water loss. The worry of not knowing what was actually happening, when the pain would end and what would be coming up was making me panic to no end. What was the issue? Was I right in thinking whatever “this” was might cause some serious damage or kill me? Did I rupture something? Will I need surgery? Who is going to deal with me? How many people are going to touch me? Am I going to be put on a ward with loads of people? Are they all going to want to talk to me and ask me loads of questions? What is going to happen with the children? When will Adam be able to come with me? Am I going to be able to explain everything properly? Will I have to be admitted? Will I be able to get out of the hospital fast? Are they actually going to listen and help me? What about my plans for the week? Christmas is coming and what if I am not home? The list goes on and on. The worries often tend to be about what “might” happen rather than what “will” happen. I don’t know and have no control over what will happen and it is the “not knowing” that makes me worry the most. The possibilities are infinite. I like to be in control, there is a comfort in that. When I know what to expect I have time to process and deal with things, make informed choices, weigh our possible alternatives. However in this state, I find it so hard to truly say what I mean, what I want, what I need and worry that I will not get it. I have a tendency to let things happen or run their course rather than questioning the how’s or why’s and this can have a negative impact on me. I struggle to understand what is being said, to ask for things, I feel pressured by others or my environment and cannot even process fully, until hours later what has taken place. And this is where the bigger problems come into play.

As a very articulate and assertive female, I do my best to state my needs and am proactive in pursuing the needs of my family and ensuring they are careful for appropriately. However, in situations of vulnerability like this, I struggle to get across my needs, to even always understand what I need. My fears, anxieties and emotions often take over and I struggle battle my own thoughts of uncertainty about my care needs. I am also aware that if it is hard for me as a more articulate woman with Autism, those who perhaps aren’t as able, in that respect, as I am will certainly struggle to make their needs clear.
When I arrived at the hospital I was put into an emergency cubical and hooked up to some fluids, as I was incredibly dehydrated. Unfortunately, this tethered me to the bed and made me feel very much like a prisoner. I had no one with me, as Adam was at home with our babies and outside of him and my mother in law, who doesn’t drive; there isn’t really anyone else we would want to rely on. So I had to choice but to face it all on my own. I remember, now, how scared I was and in tears with worry. This was made worse by another patient, in the A&E, who was threatening violence to the staff and only couple of cubicles away. I am aware that this was out of the hospitals control, but I felt so unsafe. I felt trapped by the line in my arm and no one near me to help me. No nurse, no family, no friends just me in a terrible state and weak as a kitten. Finally when a nurse came in, I told her about my Autism and that I was scared. She tried to reassure me in a very NT way, by touching and rubbing my arm, which only served to make me even more upset. Her look almost turned to pity as she then told me I would be ok and left the room again leaving me on my own with the “crazy” woman yelling about knives not too far from me.

About 20 minutes later, I was moved to another side cubical where I was made to rest. I could feel the need to use the loo (toilet) but as I was tethered to the bed, I was stuck. I mentioned it to a passing nurse, who said when my need gets bed, just buzz the nurse’s station and they would bring a commode to use in the cubical. Well that isn’t really useful. I know technically it is, but the idea of using the “toilet” in anywhere other than a bathroom was not very appealing and I wasn’t sure I would be able to use it even in desperation. I did my best to hold off as long as possible, as I know staff are often quite stretched and I was trying to calm myself. I felt a little protected in my cubical by a curtain, however the curtain wasn’t full closed and I couldn’t have closed it myself being tethered in bed. This later turned out to be a blessing in disguise. As nature began yelling for relief, I alerted the nurse’s station for help. The rhythmic beeping went on forever. Well I say forever, but it was actually 45 minutes. Yes, you read that right, 45 minutes. I was in already in pain from my medical issue, but then being forced to do the pee dance in a bed whilst connected to a needle in your arm just isn’t my idea of good care. I tried calling out to staff with no one answered me. I tried to get the attention of any staff that was passing but everyone just ignored me. It wasn’t until a passing porter finally listened to my frantic requests that anyone helped to get a nurse for me. I thought I was going to actually wet myself which would have been horrendous and very dehumanizing for a woman of my age. Once the situation was over and I was able to be freed from my bed and do the necessaries in a “normal” way, I was reattached to my bed, alone, still scared and getting increasingly worried.

Another hour later, a consultant finally came to see me. I say “a” but what I mean is a single consultant and 8 interns. They all just burst into my cubical, no warning, without asking if students could come in and observe, just a room full of people staring at me. I am sure you can see how disconcerting that would be for someone like me and given the situation. I said to them, “there are an awful lot of people in here,” and one of the students actually said, “Would you like us to go?” I said they could stay, only because I felt I had no choice. They were all already in the room and I was tired and just wanted it all over with. It was intimidating as they were all staring at me, poking, whispering and desperately trying to see what was going on. They asked my medical history which I gave them and also mentioned about my Autism and ADHD. After the discussion, I was told I would need to be admitted and see how things settled once I was on medication and perhaps surgery may be required now or in the future and I would be transferred to a ward. Furthermore, they would need more information from me and “someone” would take the information. This “assessment” information was stated me to so fast there is little time to process it. It was also stated by a doctor with a very thick accent. It is hard enough when someone has an accent but when they are reeling off information at break neck speed about their ideas on the situation and they then quickly ask for questions I doubt anyone would be able to come up with them on the spot, let alone someone who needs time to process and who is in a mental state of emergency. In the end I just said ok but was still really unsure what was going on, what I was diagnosed with, what the actual plan was and what treatment I was to have. All I knew was I am going to be staying and things would happen.

Now, I am happy to provide medical details where necessary if it is going to assist in my care, however, I wasn’t expecting a 20 odd year old boy to need to poke, prod and handle me. I was expecting him to ask personal questions of me either, on his own without anyone else there, as I was tethered to a bed. Don’t get me wrong, he was a pleasant “kid” but a kid no less. Thinking about it later, I realised he should have had a female nurse with him and not just him and alone in a cubical. But then, who am I to say it is wrong. How am I meant to know? Knowing I am Autistic and knowing there are issues, surely the doctors should be ensuring I am cared for appropriately? Knowing a male was to attend me alone and that this action is not appropriate is something they should know automatically, even at a trainee.

Once I was on the ward, I was placed in a corner cubical. For me, when/if in the hospital, I like my privacy. In fact, I NEED my space, quiet, distance and understanding to try to keep calm. I have no need to talk to other patients in the area, learn about their issues or “make friends”. Perhaps others see it differently, but I just want to heal, get out and get back to where I feel safe, secure, in control and protected, free from the sounds, conversations and personal contact of others. It isn’t just the feeling that I am forced to have conversations with people I don’t know about their personal medical issues, I wish I cared about their issues but I don’t. I do my best to be polite, I listen, fake interest, nod my head in agreement where appropriate, force myself to make eye contact, try to display some form of caring, but it takes so much energy. It isn’t that I am uncaring. Truly my feelings are quite overwhelming, at times, for others and even strangers. However, when I am in a state of weakness, ill and feeling vulnerable, the last thing I want to spend my energy on is wasted conversation for the sake of social expectations. When you are forced to have your curtains opened, you are then face to face with at least 3 if not 6 other people, who all want to relieve their boredom with conversation. NT’s do this with such easy and grace and no energy required or so it seems. Knowing I am stuck, trapped if you will and confined in a spot I don’t wish to be in, then placed in a torturous face to face setting, really makes what is not a nice situation a million times worse. The constant repeating of information over and over, the asking of questions about myself to people I really don’t want to reveal anything to and whom I will have no contact with once I leave, is often too much for me to take. All of this coupled with the endless loud alarms, slamming doors, beeping of machines, constant buzz of conversations, communal televisions on full blast because most of the ladies are elderly and going deaf, along with the goings on of staff conversations about what was on telly the night before or their love lives, make hospitals one of my most hated places to be.

Once I was put into my space, tagged, stabbed and labelled to within an inch of my life, I just wanted to sleep. I was so exhausted from the night’s events, having been so ill, on constant high alert, worried, scared and desperate for my Adam to be with me, I just couldn’t keep my eyes open. The nurses came to me every few hours to do all the necessary touching, poking, squeezing, and repeated requests that I drink nothing expect enough to wet my lips in case of emergency surgery, I just felt like a test subject. I had to tell both the morning and night staff about my Autism as it would seem no one actually reads the noted. While I am sure they have dealt with other Autistic adults, it just seems like staff just like to nod their heads, say “ok” and then do nothing to alter their behaviour. Not one staff member asked me what would help me, what would make me more comfortable or even take into account my true needs other than physical ones for the issue I was admitted for. It was like my admission about my ASD was pointless. No one asked me a single thing about my Autism and how to help me. It served the same purpose as always that since I appear “normal” then I must be ok. Since I can talk I must be able to convey all my feelings and needs, but this isn’t the case and it feels like I have to try that much harder to get the care I need.

After I had been in for 2 days, having gotten used to both the day and night staff members, I was informed by a friend who came to visit me that I was being moved to another ward shortly. Was I was in complete shock and panic. I had just gotten used to where I was in my ward, where everything was, the people around me, the noise, the staff who dealt with me and who were touching me. Now, they were moving me and no one even had the common courtesy to tell me. They know I am Autistic, surely they know I need constancy and that perhaps I would like to know what is happening BEFORE it actually happens…but nothing. No consideration for my feelings, for my anxieties and for the potential meltdown or shutdown that may follow. I was sent into a complete panic. I asked a passing staff member what was going on and they informed me that everyone in my ward was being moved to another ward as the purposes for my current ward was were being changed and our whole ward was moving to a surgical ward. Well this didn’t help me at all. I just felt helpless. Luckily my friend was kind and packed all my items up into my bag for me ready to go, as I was weak, but all I could think was here we go again! Thoughts ran thick and fast through my mind new people, new ward, new places to remember, new people next to me, new cubical and more new people touching me. What if I had a different table or Chair? Where in the building would I be? Where in the ward? Would I have people on both sides of me now and not just one? Would Adam find me? Does this mean I am having surgery? How much longer will I be in? Does this mean I am getting worse? Will they move me again in a couple of days? When will I be able to see my kids? Will I get out in time for Christmas? Will the new staff actually listen to my needs? How many visitors are the other patients in my ward going to have? How noisy will they be? Will they have kids coming too? Will the staff let me keep my curtains closed for protection? Or will they keep opening them up and force so much excruciating eye contact with others? All those questions and more came into my mind.

Finally my nurse came over to say I was moving wards in 10 minutes. I explained my situation to her and she said she would get their senior nurse to speak to me. When the senior nurse came all she asked was did I want her to explain what was going to happen and why. I explained that I had already gotten the information from a staff member, by chance, because a friend who visited had passed on the information. I also said felt that I should have been informed and kept up to date with what was happening. That should I need to come back into the hospital at a later date for surgery that it is imperative that staff is made aware of my issues because up to this point I didn’t feel my care regarding my Autism was being taken into account and it was creating needless anxieties. She stated that the hospital has an Autism specialist that deals with patients who are Autistic to help staff etc, however she only works 2 days a week. Well what use it that to me now? Two days a week, really? So, Autistic patients only need assistance on those days? There are many children and Adults with Autism who need help when in the hospital, however unless this singular person is available on the day then you’re out of luck chuck.
A shortly while later the move began, We were all wheeled like a train of beds ready for the ward swap and I could feel the panic rise up in my throat. My eyes were filling up with tears as I tried so desperately to mentally refuse them from leaving my eyes. I tried to breath calmly and count in my head to try to relax, but the more I counted the more I realised I was counting quite fast, over and over and the tears began to flow. I held on to my plushy Cheshire cat for comfort and just hoped I could calm down before we reached the new ward. I screamed inside my head for Adam as I needed his protection, for him to tell me I would be ok, he was on his way, but too late to help me now. Just relieving this in my head now brings tears to my eyes. That feeling of helplessness, vulnerability, anxiety awaiting yet another change was too much for me to bear. In these times I often shut-down and find I cannot speak. My emotions just take over and I am like a child all over again. I was sobbing quite noticeably when they slowly wheeled me it my new cubical. The new nurse, like others before, rubbed my arm to try and reassure me I would be ok. Her touching me just made me feel even worse. Inside I was yelling, “STOP TOUCHING ME!!” but no words actually came out of my mouth. I just moved my arm, pull the covers up even more and sobbed into my plushy cat.

Once in place, I realised I was in the “same” cubical spaces as on the previous ward so that gave me some comfort and I tried my best to calm down. However, my table was a different colour and the “furniture” was in different places. I waited until I felt strong enough to walk and I got out of my bed to move the items where I needed them to be. I also asked the nurse if I could switch the tables out with the cubical nearby as it was the same colour as the one in my previous ward. She asked me why and I just said “it would make me feel more comfortable” to which she replied, “I don’t see why but go ahead,” Can’t say that helped me to feel any better about the new staff and as I had asked that the new staff were to be made aware of my issues, I felt it wasn’t very supportive. But what was I going to do. These people have control over how difficult or painful my time can be in hospital so I am going to do anything that would make my life any more difficult than it already is. I set about making my new cubical look like my old one so I could, at the very least, try to make myself feel more capable of dealing with my new surroundings, all whilst still sobbing to myself and trying to wipe away my tears. It is times like these that I feel so much like a little girl trying to tell myself to be a grown up, be a woman, act like an adult and get on with things.

The new ward was no more understanding that the last, apart from one small bit of sunshine in my night nurse. When I told her about my Autism she asked me more able my needs and I told her. She ensured as much as she could that I was comfortable and she was quiet for me. She would tell the morning staff that I liked my space and to allow me that which helped me feel more at ease in the stressful environment. She still freaked me out as I jumped every time she touched me, just like I do with most people, and she tried to be gentle when waking me at night for my IV meds too, which was thoughtful. I liked her and she made it all a little more tolerable.

Of course, dealing with the new setting, new people, new situations, unexpected changes, sensory issues, physical contact etc. is all hard to deal with, however my needle phobia contributes too to my fears of being in the hospital. Even as an adult I have such a vivid memory of being four years old and needing injections to travel from Germany to the US and 4 nurses, one for each limb, and a doctor holding me down to give me the required treatments for travel, that I have such a great phobia of needles. As an adult I try to grin and bear it as much as possible; however, when you are in the hospital, there is little choice about it. I need to have a cannula to administer medication, I need blood tests to see if I am healing and they can’t wait for “special” cream to kick in beforehand. I tried my best for the most part to deal with it. The nurses always had to flush my cannula before putting in my meds or connecting me to a drip and flush after, but once in a while you get someone who isn’t so good at their job. As it happened, my cannula has been used 3 times a day now for 4 days and it was starting to have problems. In the end they had to put in a new one. Unfortunately for me I was made into a human pin cushion having had some 16 different injection sites at this point. The phlebotomist showed up at midnight, interrupting my “Tudors” binge watching, to give me a new cannula and take some bloods. We eventually got there, but I did mention that the cannula was pushed in quite far and a bit painful. She just said there is nowhere else to put it, as I had already had many injection sites and it would need to stay in place. So now, every time someone had to use the new cannula, which was in my forearm, I was in quite a bit of pain. A day later, some new nurse came to hook me up to some more meds and I explained that the site was very tender and to be careful with me. So, she listened, took absolutely no notice and forcefully flushed my cannula causing what felt like an electric shock up my arm. I yelped in pain, swore and asked her to get someone else. A minute or two later I realised that the cannula must have been misaligned and I had a huge swelling on my arm. Thankfully, the doctors came not long after and told me I could go home and no need for any more meds. So, I was lucky it could be removed and I would be free.

In all honestly, I couldn’t have gotten out of there fast enough. My overall care was good because I healed in 5 days, after receiving 3 intensive IV antibiotics and plenty of pain killers. I did, however, have to go back to my local doctors to get further oral antibiotics because the infection was not completely healed. I never saw the “Autism Specialist” or have I had any contact with her since, in spite of the fact I will need to return in coming months to have surgery. I am not in high hopes of the care I will receive regarding my Autism either while in the hospital or support outside as an adult. I don’t feel staff have enough training regarding Autism. I felt and still feel like staff assume that since I can speak, I am can move and seem “normal” to them, that I don’t need help, assistance or any accommodations. Perhaps if I had more “physical” needs then they would have been more helpful, but I cannot be sure. Perhaps staff has preconceived ideas about Autism and as I don’t “fit” that expectation they have no need to fulfil my needs. I won’t hold my breath when I am in next for better care, but at least I can try and better prepare myself for the onslaught ahead.

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