大象传媒

听

This is a full transcript of the 1800 Seconds on Autism, presented by Jamie Knight and Robyn Steward, as broadcast on 28th April 2021.

听

[Intro]

听

JAMIE - I was so terrified that if I wasn鈥檛 able to speak somebody would take me away that I basically babbled incoherently constantly for three hours.

听

MARY - There is some evidence that autistic people are up to three times more likely to use emergency departments. Also, three times more likely to be admitted to hospital following presentation to an emergency department. And most worryingly, up to three times more likely potentially to die during that admission.

听

JAMIE - We had the wheelchair assessment yesterday because I can鈥檛 walk anymore.

听

[End intro]

听

JAMIE - Thanks for downloading the programme. I鈥檓 Jamie Knight.

听

ROBYN - And I鈥檓 Robyn Steward. Our stuffed support animals, Lion and Henry - I鈥檓 not sure Henry would like being called stuffed but anyway - they鈥檙e here too, as is our lovely producer, Emma.

听

EMMA - Hello. I鈥檓 really glad to be back this month.

听

JAMIE - Along with us this month is also Oli. Hello, Oli.

听

OLI - Hello.

听

JAMIE - You鈥檝e heard him before on previous episodes.

听

ROBYN - We鈥檙e focusing on just one subject in this episode. Jamie鈥檚 been ill in hospital, and with his agreement we鈥檙e using it as an opportunity to talk about illness and how it can present, or not, in autistic people. We鈥檙e really pleased you鈥檙e home, Jamie, and that Oli is with you.

听

JAMIE - Dr Mary Doherty is on line two. Mary is known as the autistic doctor on Twitter. She鈥檚 an anaesthetist and runs a group supporting autistic medics like herself. Hi, Mary.

听

MARY - Hello.

听

JAMIE - Are there many autistic doctors?

听

MARY - There鈥檚 loads of us. Absolutely. It鈥檚 not something that鈥檚 ever really been talked about very much until recently, but once I started connecting with some colleagues and we started talking about it we鈥檝e got lots of other doctors realising that they鈥檙e autistic and come on to join the group.

听

JAMIE - It certainly kind of makes sense doesn鈥檛 it? It鈥檚 kind of like a pretty good profile. Lots of technical information, knowledge, being able to debug and solve problems. It鈥檚 quite an autistic thing. It鈥檚 like engineering the body rather than a computer system.

听

MARY - [Laughs] Absolutely, yeah. I mean medicine absolutely selects for autistic traits. You get, you know, somebody who has a passionate interest in how the human body works and what can go wrong and how to fix it, and then they just develop that into a career. That鈥檚 really what happens.

听

JAMIE - That鈥檚 awesome. Thanks for being there and we鈥檒l check in with you throughout the rest of the programme.

听

ROBYN - So, Jamie. Tell us what happened?

听

JAMIE - So I鈥檒l keep it to the very short version, but essentially I had a lot of pain and you could tell that I was in a lot of pain because I was actually screaming. When I had gallstones I didn鈥檛 scream, but this pain was bad enough that I did scream. And essentially we went to the hospital three or four times before鈥� And I was giving up, I wasn鈥檛 going to go back to hospital again and then one Wednesday morning I鈥檇 been awake during the night鈥�

听

OLI - You kind of couldn鈥檛 sleep and at one a.m. we were having this long conversation around pain and then I slept on your floor and then we went to the doctor鈥檚 at sort of six, seven, eight a.m.

听

JAMIE - Oh, that鈥檚 the night where I kept having the little, like, mini seizures.

听

OLI - Having little seizures and just screaming uncontrollably.

听

JAMIE - Yeah, yeah. Not my normal self really.

听

OLI - Not really, no.

听

JAMIE - So we went into hospital and it all kicked off from there.

听

ROBYN - Jamie, if you鈥檙e feeling this is tricky just say. I think what Emma means is if you don鈥檛 want to talk about it this is absolutely fine, don鈥檛 answer any questions you don鈥檛 want to or talk about any subjects you don鈥檛 want to.

听

EMMA - Yes, because I think, even though you鈥檝e been sharing it on your social media and you鈥檝e been talking to lots of friends and everything about it we鈥檙e about to get into the really big stuff now about when you went into hospital. And I think, speaking on a public platform鈥檚 a bit different isn鈥檛 it?

听

JAMIE - It is a little. I think one of the things that is important to me, which I鈥檝e talked about before, is that what happened to me was preventable. So if I can start talking about it and making sure that more people understand about it perhaps I can use a pretty terrible situation for myself to turn it into something more positive for the community as a whole.

听

ROBYN - So, carrying on, you found yourself in hospital, which is a weird thing to say because I think you knew you were going to hospital because I imagine Oli drove or you walked. Well, I don鈥檛 think you walked, but鈥�

听

JAMIE - Yes, we went鈥� The time when it was really bad we went in the truck and we crawled down the road with the hazard lights on at five miles an hour while I think I rabbled incoherently about the number of dots on the ceiling of the truck. I was quite delirious.

听

OLI - Pretty much, yeah.

听

ROBYN - So this is like a silly question. How did you feel about going to hospital and being in a lot of pain?

听

JAMIE - I was utterly terrified. Completely terrified.

听

OLI - Hmm.

听

JAMIE - And weirdly, I wasn鈥檛 worried about the pain as much as the fear that whilst I was in hospital somebody would decide that I didn鈥檛 have capacity and I鈥檇 be taken away from my friends. In fact the first time into the hospital I was so terrified that if I wasn鈥檛 able to speak somebody would take me away that I basically babbled incoherently constantly for three hours in order to prove that I could talk.

听

OLI - And that culminated in three of us holding you up whilst you were hot, sweaty, terrified, crying, calling your family members, saying goodbye.

听

JAMIE - Because I was so terrified someone somewhere would put me into an environment where I wouldn鈥檛 be able to regain the ability to speak. So, you know, last time it took me a year and a half to get my speech back after my last, like, medical situation. So yeah, I was terrified.

听

OLI - It was a well-founded fear.

听

ROBYN - Yeah. So normally when people talk about capacity they鈥檙e referring to it in the context of the Mental Capacity Act 2005 which is basically about whether somebody can make their own choices, make decisions for themselves and be able to anticipate what the outcomes might be.

听

JAMIE - That鈥檚 more or less what I was scared of, that somebody would decide that I didn鈥檛 have capacity. Not that I didn鈥檛 understand but because I couldn鈥檛 communicate. And then once you lose capacity some random doctor or social worker starts making decisions about your care. And in the past they鈥檝e tended to make decisions that make things worse for me, not better for me. So that鈥檚 why I was so determined that I wouldn鈥檛 lose my capacity. And I basically told every single doctor that I was in front of that I have capacity and if I lose it the person to make decisions is Mike who was with me.

听

OLI - It didn鈥檛 actually get that bad because there came a point where the doctor said, 鈥淲ould you like some sedation?鈥�

听

JAMIE - Yeah, so basically the third time in when they were like, 鈥淥kay, so this is pretty damn serious, like, you鈥檝e gone a funny colour鈥︹��

听

OLI - They couldn鈥檛 get blood out of you.

听

JAMIE - 鈥淲e can鈥檛 get blood out of you and you鈥檙e very clearly not your normal self.鈥� I think Oli suggested, 鈥淥h, when Jamie goes to the dentist they sedate him, do you have any ideas?鈥� And this lovely doctor went away, came back鈥� She was also freaking me out because she was wearing a green set of scrubs, so she changed into her normal jumper so that she didn鈥檛 look like a doctor anymore so she鈥檇 stop scaring the hell out of me. Because I was terrified. I half understood what was going on. So yeah, they sedated me and I fell asleep, and then from there I can remember waking up in a hospital bed in a dark room being told that it鈥檚, like, a day and a half later and I鈥檇 been through MRI machines and CT scanners and all sorts.听 I don鈥檛 remember any of that.

听

ROBYN - So, Jamie鈥� It says in the script, although I know this, that you used AAC a lot. Can you tell us a bit about what AAC is and how you used it?

听

JAMIE - Yeah. So, AAC is essentially using technology to help me to communicate. I do know what the acronym means but I can鈥檛 remember right now, 鈥榗os my brain is still a bit fuzzy, but essentially I used an app on my phone to either write out sentences or use icons to communicate. From the moment I was sedated for the next, like, five days, and it was very slow and very tricky, but it was much, much better than no communication at all. I don鈥檛 particularly remember it but when I was initially admitted they put me onto the emergency ward which was very, very, very loud and over the course of the first 12 hours or so the sensory overload pushed me further and further and further into a shutdown. And then after that point the learning disability team managed to get me moved to a quiet side room and then my ability to communicate kind of slowly improved from there. So rather than just being able to do simple thumbs up or thumbs down or not respond to anything at all I was able to start using very basic sign language and then being able to type single words and on from there.

听

EMMA - Can I just say there鈥檚 a really unusual thing that I think is really cool, because the nurses actually could hear your voice couldn鈥檛 they?

听

JAMIE - They could, yes. So towards the end of the stay this learning disability nurse, Laura, who is absolutely amazing, somebody told her that I hosted a podcast and what the name of it was, so she went and downloaded it and it spread through the entire ward. So she鈥檇 play it to all of the nurses and go, 鈥淟ook, this is what Jamie sounds like when he鈥檚 not ill.鈥� And then we鈥檇 have nurses coming in and going, 鈥淚 just listened to the episode on meltdowns, that was really useful!鈥� And it kind of helped them see me as a whole person, rather than just the very autistic, very quiet, very scared person that was in the bed. I suppose it kind of showed them that there is a difference between ability and capacity.听 I鈥檓 very able but at that point I had no capacity left.

听

ROBYN - So illness can be really difficult for autistic people. It鈥檚 often difficult to know which bit of you hurts or if you hurt and how much pain. And we don鈥檛 want to scare anyone but we do want to give people information. And we鈥檝e got lovely Dr Mary here to give us professional advice. And I know that this is really common for autistic people to really struggle in hospital, but Mary, do you have any idea of how common it is?

听

MARY - In terms of numbers, not really, but we know it鈥檚 a huge issue for our community. And we also know that the outcome data is worryingly poor. There is some evidence that autistic people tend to avoid primary healthcare, so don鈥檛 necessarily engage with general practitioners as much as maybe non autistic people might, and have very specific difficulties with primary care.

听

JAMIE - Exactly that. I can鈥檛 actually get hold of my GP because they require me to phone and say the magic words, 8 a.m. in the morning. So the only way for me to get hold of a GP is to have a friend over at 8 a.m. to help me with the phone call. And I鈥檓 normally fried before we鈥檝e even got through, like, the pick the options on the phone menu.

听

MARY - In research that I have done difficulty using the telephone was the number one barrier to primary care for autistic adults. So that鈥檚 a really, really important point. There is some evidence that autistic people are up to three times more likely to use emergency departments. Also, three times more likely to be admitted to hospital following presentation to an emergency department. And most worryingly, up to three times more likely potentially to die during that admission.

听

And I think a lot of the reason for that, personally, is that autistic people tend to delay seeking care. The research that I have done has shown that two thirds of the autistic respondents to my survey had had either a mental health or a physical health condition which wasn鈥檛 treated because of difficulties accessing healthcare. And most worryingly, a third of people said that they had a potentially life threatening condition for which they didn鈥檛 access healthcare. So people are turning up to emergency departments much later in the course of an illness when it鈥檚 potentially much harder to treat. And I think that is definitely feeding into our mortality data, because it is known that autistic people are potentially more likely to die earlier than non autistic people. And a lot of that, in my opinion, is because of difficulty accessing healthcare.

听

JAMIE - Absolutely. And there鈥檚 kind of, like, three different parts where the chain breaks. So the first part of it was the basic ability to phone 111 and communicate. The second part of it was recognising that there was something that was wrong and not dismissing it as, oh, I鈥檒l go to bed and it鈥檒l be better tomorrow. And then the third part of it was my friends took me to A&E three times and every time we went they would make us wait an hour and by the time I鈥檇 been in that environment for an hour I couldn鈥檛 communicate. So they took one look at me and went, 鈥淥h well, it鈥檚 probably nothing. Here, have these painkillers and some antibiotics and see if it improves in three days.鈥� By the time I went to A&E the third time they immediately treated for sepsis, because they were like, 鈥淓r yeah, if this is sepsis he鈥檚 going to die in the next couple of hours.鈥� And I wouldn鈥檛 have gone in. My friends essentially bullied me into going in.

听

ROBYN - About the same time you went to hospital I also went to hospital. I had to have a fingernail removed because I鈥檇 got an infection in my finger. I have been to A&E a couple of times before COVID, but now that it鈥檚 COVID I found it a much better experience because they don鈥檛 want people waiting in large groups. So they send you off, they triage you as soon as you get there in my local hospital, and they send you to another smaller room and there were about two people waiting. And I think the longest time I waited for anything was 15 minutes. Everything was within five or ten minutes. They looked after me really well, they took it really seriously. They put a canular in because they thought they might have to give me antibiotics and then I had the minor op, which was quite scary, I was on my own. Because it was on my finger you could see it, like, I just had to hold up my finger and they went, 鈥淥h, yeah, your finger is quite big isn鈥檛 it?鈥� So then they could just get on with it.

听

JAMIE - I think that was why we ended up waiting four hours the first three times we went, because beyond the fact that I was in pain and I was visibly in pain, nobody could see anything. The initial diagnosis was really bad kidney stones and then that turned in to a kidney infection and then possibly sepsis, they鈥檙e not entirely sure.

听

OLI - But then that鈥檚 the problem with diagnosing anything in a Jamie. Jamie doesn鈥檛 react in the way that doctors expect when they do their triage. They鈥檒l say, 鈥淲hat hurts?鈥� and then poke the bit that you say hurts. And Jamie doesn鈥檛 scream and doesn鈥檛 writhe, just kind of locks up.

听

JAMIE - No. Quite often they poke me and my friends would go, 鈥淒id you notice how he was much more verbal a couple of minutes ago and now he鈥檚 not talking at all after you poked him? He鈥檚 probably in a lot, a lot, a lot of pain.鈥� And they鈥檇 be, like, 鈥淲ell, he didn鈥檛 really react the way we鈥檇 expect for kidney stones so....鈥�

听

OLI - Go home.

听

[Jingle: Send any questions or thoughts to stim@bbc.co.uk]

听

ROBYN - Mary, could you tell us why a lot of autistic people find it difficult to describe pain?

听

MARY - Autistic people have the same range of pain tolerance as the non autistic population. Some people have a high pain threshold, some people have a lower pain threshold, but a lot of the difficulty arises when we try to explain pain in a way that doesn鈥檛 match the expectations of the healthcare providers, because generally doctors haven鈥檛 been trained to understand or to look after autistic patients. So we can often describe pain in a way that seems quite incongruous. So our words and our non verbal signs of pain just may not match. And to a doctor trying to assess our medical condition that can be quite disconcerting, and sometimes unfortunately it does lead to an underestimation of the degree of distress that we are in.

听

ROBYN - Can you tell us how doctors normally ask patients to rate pain?

听

MARY - Yes. There鈥檚 a couple of fairly common methods, all based around the idea of a numerical rating scale. So commonly doctors will ask patients to rate their scale from zero being no pain, up to ten being the worst pain imaginable. Or sometimes it goes from zero to 100. Variations on this might have pictures of graduated facial expressions. So happy expression, not so happy, very neutral, a bit unhappy, really unhappy. They鈥檙e often used with children. Yes, so it鈥檚 all about asking a patient to take their internal experience and translate that into a number that a doctor can plot on a graph. That doesn鈥檛 work for us very well.

听

EMMA - It doesn鈥檛 work for you, Jamie, does it? So Oli, your friend, just popped up and developed a new system.

听

JAMIE - Yeah, Oli just reinvented something from scratch. Tell us about it please, Oli.

听

OLI - Happily. So because Jamie doesn鈥檛 exhibit pain on a normal nought to ten scale, he would describe it as, 鈥淣othing, nothing, nothing, ow!鈥� we instead worked out that he actually uses colours as a way to describe or experience pain. So some examples are when he has what I would describe as a sharp pain he describes it as a purple pain. When he has a dull pain that is a grey pain or an aching pain. And when he say, for example, burns himself and it throbs that鈥檚 a brown pain. And they also have a scale in terms of how he experiences them in how deep the colour is. So a very light colour, light purple, is a small, sharp pain, whereas a very dark purple or a black colour is a very, very, very painful sharp pain. So this has been pretty revolutionary.

听

JAMIE - Yeah. So, for example, having my blood taken is a relatively light purple pain. Taking a metal fork and poking the exposed nerve in my tooth is a really dark purple pain. And falling one foot onto a CT scanner was the purple-est of purple pains I鈥檝e ever experienced in my entire life and I kept blacking out.

听

OLI - That became a very black pain.

听

JAMIE - Yeah, it very rapidly became a snoozy time.

听

EMMA - Okay, but this chart doesn鈥檛 have to work on colour. So Robyn, you don鈥檛 use colour, right, to think about your pain? How would you work the chart for Robyn? So what would you ask Robyn to make the chart work for her?

听

OLI - The technique that we used to initial develop it isn鈥檛 so much around colours, that was just how it worked for Jamie, rather what we did was ask about specific situations. So I used the example of if I cut myself it feels sharp. How does it feel to you? Or if I hit my head or fall off my bike it鈥檚 like a dull pain. How does that feel to you? And then by asking about the same pain in different ways we were able to see that it was internally consistent and the same kinds of pain, even if it鈥檚 a different experience presented the same. And then we had the language to talk about that type of pain.

听

JAMIE - I built a little set of widgets on my phone so I could zoom across to some pictures, and then the pictures have a colour gradient, so from like dark purple to light purple. And then the label for what neurotypical people would call it so that if somebody asked me about pain I could point at where I was on the picture and they could read the label off. And then the breakthrough was that when I was with the doctors the next time I could communicate that I was in pain in two different ways. There was a dark grey pain when I was not moving and a really sharp purple pain when I was moving. And that was the breakthrough that meant that the doctors actually did something rather than just send me home.

听

ROBYN - The big difference between me and Jamie is that my mum is really good at this stuff. And because she鈥檚 known me obviously all my life she鈥檚 able to support me. And I think that she just gets it because she鈥檚 known me all my life and she鈥檚 also seen all these things happen to me, like, I mean obviously she didn鈥檛 see me dislocate my kneecap because that happened at school, but she knew it happened, you know, and she was there when I did all the physio and when I was on crutches. And when I had a hot wire in my finger because I got my finger trapped in a door my dad was there for that one. But again, you know, my mum saw it before and after.

听

And so all the different things, the tonsilitis, the bronchitis, all of those things, because she鈥檚 been there she has a lot of knowledge from experience and she can ask me and try and home in, I guess using her experience, home in to which bit of me I鈥檓 supposed to be paying attention to. Because like Jamie said, you might have a couple of pains at once and it would be quite difficult to distinguish which one was which and to communicate that in a way that made sense to other people.

听

MARY - It does need a lot of work. It does need a lot of research to come up with a system that is robust enough to use in clinical practice. But I think even more important than developing a system like that is just the idea of just being able to translate. Because I think listening to you over the last few minutes that鈥檚 one of the themes that has really come through is just the need for translation, whether it鈥檚 translating the GP鈥檚 words or translating the experience. And the ideal people to translate in a hospital setting are autistic hospital staff. The problem is, there鈥檚 loads of them, but the problem is the culture in healthcare is such that most people generally don鈥檛 disclose. And I think if we can change that I think that would be a very quick and easy way of improving healthcare outcomes for autistic people.

听

[Jingle: 1800 Seconds on Autism. With Robyn Steward and Jamie Knight]

听

听

ROBYN - What are the things that have really helped you? In the script it talks about that Oli made a tent over your bed and about safe foods, but can you tell us the things that really were most helpful?

听

听

JAMIE - Back in the hospital we really had to understand the sensory side of things. So I was put into this side room and there was a light in the side room that couldn鈥檛 be turned off. So my friends, especially Oli and Mike, they engineered a tent that went over the side of the bed to block that light from me. The second thing was at one stage I got really scared and I wanted to leave the hospital, I wanted to go home. I wanted to go and sleep in my own bed. I didn鈥檛 really understand why I was there, because I didn鈥檛 know where I was. I didn鈥檛 know what floor I was on. I asked somebody where I was, and they were like, 鈥淵ou鈥檙e in the hospital,鈥� and then for two days straight I was like, yeah, but which hospital? Like, the one near my house or one somewhere else? And one of Oli鈥檚 suggestions was, well what I鈥檒l do is I鈥檒l put together a timeline for you that is everything that happened so that when you remember something and say, 鈥淚 remember a guy in a big red top and there were some bars on the side of the bed and he poked something through鈥︹��

听

OLI - That was the first time you were admitted and they did the anaerobic blood cultures.

听

JAMIE - There we go. So I was then able to tie it back to the timeline and every time I felt scared or like I didn鈥檛 understand what was going on I could pull up the timeline and look at it and go, oh okay, so I got鈥� Because sometimes I鈥檇 get so muddled that I鈥檇 be lying in the hospital bed going, I don鈥檛 know why I鈥檓 here. So being able to look it up or ask someone, I must have asked the people around me what was going on about a hundred times because every time I fell asleep or somebody came in and did an injection or took more blood or whatever I鈥檇 get really derpy and spaced out again and then I鈥檇 have to rebuild the understanding of the situation.

听

OLI - There was also an element of trauma. You kept on having dissociative episodes and every time you came back from that you didn鈥檛 know where you were or why you were there, and it was terrifying.

听

EMMA - So what鈥檚 dissociative episodes? What does that mean?

听

JAMIE - So essentially, if you scare somebody enough consistently enough they get to a point where they stop being attached to the reality and they just float off鈥� they disassociate.

听

OLI - There鈥檚 a couple of different kinds and the ones you were doing were the third person ones where you see your own body from outside and it鈥檚 pretty horrible.

听

JAMIE - Yeah. And it鈥檚 like watching a movie that鈥檚 happening to someone else and it鈥檚 a鈥�

听

OLI - Well it effectively鈥� Sorry. It allows your mind to avoid trauma by means of separating yourself from your body. And it sounds like a bit of a mumbo jumbo-y thing and I thought it might be, but having seen it in action and Jamie effectively protecting himself from a traumatic situation by doing that and his eyes glazing over and then sort of 30 seconds or a couple of minutes later coming back round and not knowing where he is, why he is there or who he is, is yeah, a hell of a thing.

听

JAMIE - Because it was one of the things that I was most scared of. It鈥檚 why I phoned my friends to say goodbye because I was worried that I鈥檇 lose my sense of identity. Because when you disassociate over and over and over and over and over again every time you disassociate it鈥檚 slightly harder to get back to the person you were before you disassociated. So yeah, it was terrifying.

听

OLI - Thankfully it鈥檚 not happened again since that particular night. That was before anything was diagnosed, you were still in extreme pain. That room had broken light switches that we couldn鈥檛 actually, despite my trying to jam a pen into the light socket - don鈥檛 try this at home kids - I couldn鈥檛 get the lights to turn off. And people kept coming in and doing painful things to you, taking blood and鈥�

听

JAMIE - Yeah. I can remember one of the disassociations, I was just watching myself with people stabbing me and I didn鈥檛 know why. And in my head someone had just walked up and hit me鈥� they were just stabbing me with a sword and I was like, oh, I鈥檓 being stabbed with a sword, that鈥檚 bad for Jamie. I wonder what Jamie will do next. And of course I was unconscious, I didn鈥檛 really understand that someone was taking blood or鈥�

听

OLI - Semiconscious, yeah.

听

JAMIE - Yeah. But my head had seen it that I was a knight in armour and someone had stabbed me.

听

OLI - Yeah. You weren鈥檛 terribly lucid. I mean, you know, when you have such extreme pain you were pretty sort of鈥�

听

JAMIE - Delirious.

听

OLI - Delirious, yes. That鈥檚 the word I was looking for. And it was the case, it was true, true delirium.

听

[Jingle: Email stim@bbc.co.uk]

听

ROBYN - Jamie, how has it been since you鈥檝e been home?

听

JAMIE - Oh, since I鈥檝e been home is a slightly long, complicated topic. So I had the initial medical emergency stuff where I was in hospital for five or six days. And I walked out of the hospital. Just about walked out of the hospital. The following day I couldn鈥檛 walk quite as far. The day after I couldn鈥檛 walk quite as far. And that trend continued until I couldn鈥檛 walk at all, and then at the same time I also couldn鈥檛 sit up anymore, which was quite scary. So I ended up in hospital again and eventually they diagnosed a spinal cord injury, called cauda equina syndrome, which is basically posh words for saying where all the stuff connects at the bottom of my spine something weird is going on, and the doctors are still trying to work out what that is

听

The current leading theory, although as Mary might confirm, this isn鈥檛 a theory so much as a when they rule everything out this might be what鈥檚 left, is that where I鈥檝e had really long term infections it鈥檚 made its way into a place it shouldn鈥檛 and then that鈥檚 damaged the nerves and that鈥檚 why I鈥檓 experiencing what I鈥檓 experiencing. So I鈥檓 currently鈥� So we had the wheelchair assessment yesterday because I can鈥檛 walk anymore. I can sort of toe walk around on my tiptoes and lean on walls and stuff but that鈥檚 about it. So my life is changing very rapidly, but at the same time my life isn鈥檛 changing that much at all because I already had the support network, I already had my routines and we鈥檝e just adapted what support and routines I already had.

听

I鈥檝e already got back on a bike, which is the most Jamie thing in the world, which is I can ride a bike ten meters but I can鈥檛 walk ten meters. Because on the bike I just stand up in a strong position and kind of roll down the hill stood up on the bike. I built myself a custom built bike that holds me in exactly the right position. So yeah, current life is really weird, but I鈥檓 out of the woods from an emergency perspective. The doctors are just trying to work out what caused it. My arms and my hands are still getting worse but even then it鈥檚 not too bad and we鈥檒l bounce back and make it work, you know. We鈥檙e engineers, we鈥檒l keep engineering.

听

ROBYN - It鈥檚 very sad to go through that experience and to know that a lot of it was preventable. And I鈥檓 really sorry that you鈥檝e had that experience, Jamie, and I鈥檓 sorry that it鈥檚 having such a negative impact on your life and I鈥檓 really glad that you鈥檙e back on a bike.

听

Thank you for listening to this episode of 1800 Seconds on Autism, and thanks for telling your story, Jamie. I really hope that you get some answers and that you feel better soon.

听

JAMIE - We love reading your messages so please get in touch. Our email is stim, S-T-I-M @bbc.co.uk. And if you鈥檙e a first time listener and like what you heard on this episode please subscribe to the podcast on 大象传媒 Sounds. Twenty-two previous episodes are already available there. Bye.

听

ROBYN - Bye.