大象传媒

This is a full transcript of the 1800 Seconds on Autism podcast as released on 7 May 2020 and presented by Robyn Steward and JAMIE Knight.
[JINGLE - 大象传媒 Sounds: music, radio, podcasts. 1800 Seconds on Autism with Robyn Steward and Jamie Knight.
JAMIE - I don鈥檛 do a wee dance, I just go, 鈥淚 need a wee!鈥� with no warning whatsoever.聽
EMMA - Right, so you don鈥檛 get that, I mean there鈥檚 a really obvious wee feeling?
ROBYN - Hello, this is 1800 Seconds on Autism, a podcast about autistic life. I鈥檓 Robyn Steward.
JAMIE - And I鈥檓 Jamie Knight. This show went a bit wrong due to a very legitimate autism matter: our guest couldn鈥檛 take part. In fact it was so last minute that Robyn and I were already in front of our microphones when it all changed.
ROBYN - You鈥檙e probably thinking I鈥檝e heard autistic people hate change. Well, me and Jamie aren鈥檛 always big fans of change, but we came up with a plan and it worked. And later in the episode we will be talking about whether we can tell if we鈥檙e ill, and what not to do to Jamie in a hospital 鈥� that鈥檚 a bit about getting poked by a doctor. Let鈥檚 begin with our producer, Emma, telling us the bad news about the programme changes.
EMMA - Okay, Robyn, Jamie, we鈥檝e had a change of plan: the guest we were going to have we鈥檙e now not going to have, so things have kind of gone out the window. What should we do now?
JAMIE - We think we should do a podcast about change, and we will do an impromptu podcast about situations that cause lots of change, and we鈥檒l make it up as we go along.聽
EMMA - I mean, this has thrown me this change.聽
JAMIE - Oh, we鈥檙e chilled. When I come for a podcast I鈥檓 expecting to sit in a chair for a few hours and talk. I鈥檓 going to still sit in a chair for a few hours and talk. Shall we do one of those traditional hello and welcome to the show bits?聽
ROBYN - Oh yeah.聽
JAMIE - I can see the producers twitching.聽
ROBYN - Okay. Hi everybody, this is the changed edition of 1800 Seconds on Autism. I鈥檓 Robyn.聽
JAMIE - And I鈥檓 Jamie.
ROBYN - And we鈥檝e got Lion.
JAMIE - Roar.
ROBYN - And Henry, the bat. He鈥檚 a bit shy.
JAMIE - And we also have Ollie and鈥�
ROBYN - Louisa.
JAMIE - Louisa. We found out that the person wasn鈥檛 coming and we have started talking about topics that we know about that we don鈥檛 need to prepare for. And then we picked four topics; we then drew them out in boxes and we put little icons on them to communicate what they are. And that鈥檚 basically the structure of our show. That鈥檚 kind of what we鈥檝e got instead of a script.聽
EMMA - And do we want to talk about why our guest isn鈥檛 coming?聽
JAMIE - Because parking is terrible, and when you run out of spoons in the middle of a car park it鈥檚 terrible. So, she鈥檚 going to get herself home safely, which is the most important thing.
ROBYN - Yeah, that鈥檚 the most important thing. Also maybe a learning point for the 大象传媒 is maybe they should have a photo journey.
JAMIE - Maybe a photo journey, a visual diagram of where the parking is. Actually weirdly me and Ollie have parked in the same car park and the first time we went there we got thrown by the fact that the map doesn鈥檛 take you down the road that鈥檚 got the car park on it. It takes you down the road to get to the front door, which is nowhere near the car park, so whoops.聽
EMMA - Okay, on with your show.JAMIE - You sound stressed, Emma.
ROBYN - It鈥檚 okay Emma, we鈥檝e got this, we know about how to do change because our lives involve lots of change and you鈥檙e going to be鈥�
EMMA - But what if I don鈥檛 have a show, though? I was expecting a guest. I don鈥檛 have a guest.
ROBYN - You will have a show. Don鈥檛 worry. We鈥檙e going to do 1800 Seconds on Autism and we know how to do it, don鈥檛 we, Jamie?
JAMIE - We do. Let鈥檚 get started.聽
ROBYN - Okay. To start on each episode we do a checklist.聽
JAMIE - Ooh, hello.
ROBYN - And the first thing on the checklist is spoons. How many spoons do you have?聽
JAMIE - I have five spoons and I started the day with eight spoons. I鈥檓 a little bit lower on spoons because of change and making things up as we go along, but actually I鈥檓 pretty good. Yesterday was a complete mess but I鈥檒l come on to that in a bit because we鈥檙e talking about change. But you know what, right now I鈥檓 pretty damn good. How about you, Robyn?
ROBYN - I鈥檝e got six spoons.聽
JAMIE - Six? Nice.聽
ROBYN - Spoons is something that came from the disability movement and it鈥檚 a way of measuring energy. Each person will wake up with a certain amount of spoons and some things will help you get more spoons and some things will cost spoons.聽
JAMIE - And when you run out of spoons that鈥檚 the end of your day; you鈥檙e really going to struggle.聽
ROBYN - Yeah.聽JAMIE - So, for example if I wake up with only four spoons I can鈥檛 do a five spoon activity, no matter how much I want to, because it will cause a meltdown or a shutdown or just a really bad thing. But I鈥檝e had support to get here today. The ride here was lovely so it only took a couple of spoons. So, of the eight spoons I started with this morning I鈥檝e still got five, which is pretty awesome.聽
ROBYN - And we鈥檝e had Twixes.聽JAMIE - We love Twixes.聽ROBYN - Other chocolates are available.聽
JAMIE - Oh, other chocolates are available; this is not the opinion of the 大象传媒.聽
EMMA - What does five spoons look like?聽
JAMIE - What does five spoons look like?聽
EMMA - Okay, what does it feel like?
JAMIE - Bubbly, bouncy and, let鈥檚 see, what鈥檚 a good five spoon activity, about three and a half to four hours of coding takes five spoons; reading about two or three chapters of a reasonably complex book takes about five spoons; a shower, a shave, going to the loo takes about two spoons, so I could have two showers, shave twice and go to the loo twice.
EMMA - Okay. So, two spoons is your morning getting ready for the day?
JAMIE - Yeah. Well, what I do is I do the shower and shave the night before so it comes out of the day before鈥檚 spoons, and that鈥檚 how I make sure I鈥檝e got enough spoons for the podcast, as I try to move as much as possible to the day before and the day after.聽
EMMA - Can you regain spoons?聽
JAMIE - Sort of. If I stop and hug lion or have a nap or do what I did yesterday, which was to mostly curl up in a ball and hide for several hours, that can really help me regain spoons. The other thing that can help me regain spoons is doing things that are really super, duper structured. So, I have audio books that I鈥檝e listened to 100 times before. If I go and hide and listen to A Short History of Nearly Everything by Bill Bryson I can pick it up anywhere in the book, I know it word for word, that鈥檚 really structured. It takes an hour and it really helps me recharge, get back on balance and then be ready to do more things.聽ROBYN - So, now I need to ask you, Jamie, have you got any new stims or are they just the same as last time?聽
JAMIE - I have got a new stim and it鈥檚 kind of a really good one. Ollie, who鈥檚 one of my support folks, who鈥檚 actually sat in the room next door, he brought me a corduroy dinosaur for Christmas, and it鈥檚 actually a door stop, not a toy, and it鈥檚 really heavy and it sits in my bed. He鈥檚 made of corduroy and corduroy is like this lumpy ripped fabric, and now when I鈥檓 really bored I run my fingers down the end, right on my fingernails, and it goes f-dump, f-dump, f-dump between all the gaps. And I do it as slowly and carefully as I can, getting slower and slower and slower and slower and slower, and then suddenly I find that I鈥檝e been doing it for 20 minutes and I鈥檝e completely missed the phone call I was supposed to have. So, it鈥檚 good, it鈥檚 really relaxing and consumes my whole brain in quite a nice way; but not the most useful stim I guess.
ROBYN - What is your dinosaur called?聽
JAMIE - He鈥檚 called Roy because he鈥檚 corduroy.聽
ROBYN - Oh.
EMMA - Ah.
JAMIE - So, his name is Roy.
ROBYN - Stim is when you do something that is repetitive like clicking the top of your pen or flicking your hair or playing with your beard, if you have one, or rocking or flapping.聽
JAMIE - And I鈥檓 sitting in the corner doing about half of those things right now, which is funny.聽
ROBYN - You haven鈥檛 got a beard though so you can鈥檛 do that.聽
JAMIE - I鈥檝e got stubble. I love my stubble. Actually I hate my stubble but I like it, and then I go okay, done with stubble now, and shave it all off.聽聽
EMMA - Why do you stim?
JAMIE - It鈥檚 kind of soothing. It鈥檚 kind of nice. My body just does it anyway; I don鈥檛 choose to. And ironically I can鈥檛 do any of my stims on purpose. So, the other day somebody asked me to show them an example of flapping, and they just started laughing because apparently if you had somebody pretending to be me pretending to flap that鈥檚 what it would look like. And sometimes they鈥檙e good, sometimes they鈥檙e not so good, but mostly they鈥檙e a useful thing.聽
ROBYN - I asked 100 autistic people about why they stimmed and for the most part it was a coping mechanism for a lot of people.聽
JAMIE - Do you ever wonder if, so for me my stims happen and then I have to think of a reason of what caused them? It鈥檚 not like I go, I鈥檇 like to cope 9% more in this situation.聽
ROBYN - Oh yeah, most people say it鈥檚 unconscious.聽
JAMIE - Yeah, we are trying to think of a reason to explain it rather than it being a choice, which I think is one of the things that the teachers used to get wrong when I was younger: they would assume that I was choosing to rock or choosing to flick my fingers. I wasn鈥檛; my body was just doing it. And they used to go things like, 鈥淪top that!鈥� and I鈥檇 go, 鈥淪top what? I genuinely don鈥檛 know what you鈥檙e referring to because I鈥檓 not conscious I鈥檓 doing it鈥�. So, we had to teach them to go, 鈥淧lease stop rocking鈥� or, 鈥淧lease stop flicking your fingers, you鈥檙e distracting other students鈥�, that sort of thing.聽
ROBYN - Though you shouldn鈥檛 have to stop rocking.聽
JAMIE - I agree. Stims that don鈥檛 hurt people are kind of fine. There are some stims that end up then affecting other people鈥檚 environments. And we need to have that weird balance between respecting the environment that other people need whilst also not limiting people鈥檚 freedom to be themselves too much.聽
ROBYN - I think also it鈥檚 important to find out why a person is stimming, because it might be, say, their lighting is wrong and actually just reducing the lighting or giving them a hat with a brim or sunglasses or something would actually solve the problem.聽
JAMIE - Can I segue into a topic from there?聽
ROBYN - Well, we鈥檝e got one more thing on the checklist.聽
JAMIE - Oh okay. What鈥檚 that thing?聽
ROBYN - Intense interests, have you got any new ones?聽
JAMIE - Well, I鈥檓 still doing mountain bike stuff. I鈥檝e just actually started building another mountain bike, and I鈥檓 writing a small book about how to build mountain bikes for autistic people. I鈥檒l probably never publish it but I鈥檓 enjoying writing it. But the other intense interest is Bill Bryson has released a new book all about the human body, and I kind of really like cadavers and cadaveric science and how bodies work and what happens when people die and stuff like that.聽
ROBYN - What is a cadaver?聽
JAMIE - A cadaver is the name for a body when somebody has died. So, for example a medical cadaver is when somebody has died and they donate their body to science or to medicine they stop being a person, they鈥檙e removed of their identity, they鈥檙e given a number and they become a cadaver.聽
ROBYN - Oh.聽JAMIE - It鈥檚 the flesh of a human but none of the person apparently. Depending on your religious perspective that may or may not be true, but at least from the cadaveric sense that鈥檚 what they mean.聽
ROBYN - Well, that鈥檚 very interesting, Jamie.
JAMIE - I am being a good boy and I鈥檓 not talking about autopsies, so I am being good and I鈥檓 probably going to stop there.聽
ROBYN - Well, I鈥檇 quite like to talk about autopsies but I鈥檓 not sure how our producers would feel about that.聽
JAMIE - She looks a little queasy already.
ROBYN - But you really want to talk about a topic so go on then.
JAMIE - I do. There was a segue to it earlier about change, unexpected change and sensory stuff. Ah, I remember now: the caf茅 that I鈥檝e been going to every day for five years pretty much has bloody closed and now I鈥檓 stuffed. More about that on the 10 O鈥檆lock News.聽
[Jingle - Email stim@bbc.co.uk]
JAMIE - Okay, so one of the biggest things that I find hard is being home alone, because when I鈥檓 home alone there are a million things that are drawing my attention, but I also need to stay safe. And I tend to have lots of little accidents or make lots of little mistakes that are just really silly. So, leaving doors open, leaving windows open, leaving the cupboard doors open and then banging my head on the cupboard doors, leaving the fridge open, leaving taps on 鈥� I forget these things. So, when I鈥檓 home alone I am being exceptionally careful and aware of my environment and being on top of it. But that means I get really tired really quick. So, rather than having support people around all the time, which is very expensive, and to be honest if they鈥檙e just sat on the sofa doing nothing it鈥檚 a bit of a waste of their time, I鈥檝e been escaping my flat, crossing the road and going to a caf茅 which was in the middle of Mothercare. Now, of course Mothercare recently went bankrupt and they鈥檝e closed all the Mothercare stores, and with it the caf茅 that I use. So, now I鈥檝e suddenly lost that ability to escape the environment. I have turned up at the local caf茅 in my pyjamas not wearing shoes, and they were literally just like, 鈥淵ou鈥檙e not wearing shoes, Jamie, should you be wearing shoes?鈥� And it鈥檚 in that bubble, all of my friends are nearby, so I can go to someone, 鈥淚鈥檝e walked to caf茅 without shoes, can you come and pick me up or could you drop me a set of shoes over?鈥� If I turned up looking a little bit dishevelled or spaced out it was only a short road crossing, so I was very unlikely to get hit by a car. It had a zebra crossing, no traffic lights; even if I had very few spoons I could get myself there safely. With the caf茅 in town I have to take buses, I have to take the right buses, I then have to walk from the bus stop across a busy shopping centre to where the caf茅 is, go upstairs in the book shop to find the caf茅, then order food and find a seat, and it鈥檚 really busy. That鈥檚 all taking lots and lots and lots of spoons and planning. But what I need to is I need to leave enough spoons so that I can also get home safely. Now, I don鈥檛 know if it鈥檚 going to be two spoons or four spoons to get home, depending on how busy the buses are. If I leave and I鈥檝e only got two spoons I quite often get on the wrong bus, and then by the time I go, hang on a minute, I don鈥檛 recognise where I am, I should be home by now, I have no idea where I am. So, then I need to get someone to come and rescue me or find me a way home. So, when I鈥檓 at home if I wake up, like yesterday when I鈥檝e only got four or five spoons for the day, I can鈥檛 make it to the end of the day; I need to find ways to preserve my spoons as much as possible and just try and make it work. So, what I want to do is I want to find something which is equivalent to what the caf茅 was, which is a small space with people that I know, where I can be somewhat anonymous, and it鈥檚 kind of self-contained. Do you want me to run through some of our ideas?聽聽
ROBYN - Yeah.聽
JAMIE - Okay. So, the two big ones, one of them is to get a flat share that I don鈥檛 live in. So, we鈥檝e got friends who are looking to live in the same area where I live, so I put a couple of hundred quid a month in towards the rent, and in return I get the smallest bedroom. And all it has in it is a desk, and I go and hide there and go and work there. Because it鈥檚 not my home at least I鈥檓 getting out and about, and then I can walk to and from work, even if work is just a flat over the road. Another option is various friends of mine build vehicles and want things like workshops, so maybe we can find like a large workshop where the friends that I鈥檝e got who want workshops could rent the workshop area and then I could go and hide in the office there and hear everybody else rummaging around.聽
[Jingle - Send any questions or thoughts to stim@bbc.co.uk]
ROBYN - I鈥檝e been doing decluttering now for about six months because my landlord said that I have a lot of stuff in my flat and that he wants my bedroom to look like a hotel bedroom.聽
JAMIE - That鈥檚 strange. It鈥檚 a little bit invasive, isn鈥檛 it? We want our homes to look like our homes. Because I actually get it the other way round which is I get told off by friends for my flat looking more like a monastery, when I鈥檓 like ooh, I don鈥檛 want anything else in here, I quite like it looking almost empty. So, it鈥檚 almost like there鈥檚 an expected amount of untidiness, and if you鈥檙e more untidy or less untidy you get flak for it.聽
ROBYN - I always thought that living with other people wouldn鈥檛 be a very good idea because in the past I鈥檝e found it very stressful. However, I鈥檒l come back to that. The biggest room, the slash living room, slash kitchen, slash dining room, that鈥檚 all now tidy. And it feels a bit lonely and huge. Now I鈥檓 thinking that now that I have learnt to be tidy and I鈥檓 relatively effective at being tidy in the spaces that I鈥檝e learnt how to do it in, maybe it would be better to鈥�so one of the big problems that I have is that there are a lot of small things that I can鈥檛 do, like my flat is in a house and the outside house light bulb went a few months ago, and I don鈥檛 have the dexterity to be able to take the light out. But I could go to the shop and buy a new light if somebody else could do the taking it out and putting it in.聽
JAMIE - Would be that something that your landlord could arrange?聽
ROBYN - Well, yeah, he probably could, but there鈥檚 a guy that lives downstairs and he鈥檚鈥�
JAMIE - Is he nice and helpful?聽
ROBYN - Well, he鈥檚 quite capable of being able to do that. He鈥檚 taken the light out, but he has left it in his car, because he was going to go to B&Q.
JAMIE - And he didn鈥檛 get around to that bit?
ROBYN - And he hasn鈥檛 got round to it.聽
JAMIE - So, if you gave him one and was like, 鈥業鈥檓 being helpful鈥�?
ROBYN - Yeah, but the thing is I don鈥檛 know what kind of light it is, because I asked him and he couldn鈥檛 tell me. My point to this story is there are a lot of little things like that that really become big problems. Or like the fact that the post in the communal doorway when it comes through the letterbox it just goes on the floor and there鈥檚 a lot of post for random people.聽JAMIE - That don鈥檛 live there anymore?聽
ROBYN - That don鈥檛 live there anymore or that own the upstairs flat but don鈥檛 live there or whatever. And I find it really difficult because of my visual processing problems to be able to sort the post out. Often the writing is small and you have to have a lot of short-term memory and it costs me basically a lot of spoons to be able to do that.聽
JAMIE - So, some support with sorting. All of my post goes to my friend鈥檚 house; none of it goes to my house.聽
ROBYN - My post is fine, I can manage that, but there could be a thing on the wall for sorting the post. And I have talked about it. And there are other little things that come up from time to time.聽
JAMIE - No, what I mean is rather than you doing it maybe there鈥檚 some support you can access.聽
ROBYN - Yes, but I鈥檓 coming to that.聽
JAMIE - Oh okay.聽
ROBYN - A friend of mine lives in a housing co-op. A housing co-op is when a group of people own a house, or in this case a street and all the houses on it, and they each have an equal share in whether it be a charity or a limited company that owns it. There鈥檚 no profit made. All the money that鈥檚 collected goes into a pot, and there are subcommittees that choose how that money is spent. So, for example a certain amount of it goes to maintenance, and then some of it goes to the gardens, and they鈥檝e got ponds and fish and things.聽JAMIE - That鈥檚 cool.聽ROBYN - So, you have your own room with a lock on the door, but you have a shared kitchen, and there are three bathrooms per house of 10 people.聽
JAMIE - Gosh, it鈥檚 like you鈥檙e describing where I lived in supported living.聽
ROBYN - I guess it is like supportive housing however鈥�
JAMIE - Just without the support.聽
ROBYN - Well, yeah, but everybody has an equal say.聽
JAMIE - In theory in supported living that was the set up; it wasn鈥檛 in reality. Yeah, there鈥檚 the financial side which is a bit different, but like pragmatically it sounds very similar. I loved supported living; it worked really well for me. I had a bedroom and a lounge, a shared bathroom, and a little kitchen space that I never used in my room, and then a big communal kitchen. I say cook, but I used to make things in the communal kitchen, and I liked it because there were always other people around doing their own thing. So, if something caught fire or if I really screwed up and chopped my finger off, there would be somebody to go, 鈥淯h, I just chopped my finger off, what do I do now?鈥� However if I鈥檓 at home completely on my own I screw up so badly using the kitchen, leaving doors open and leaving things on, losing things, leaving the milk out, that it鈥檚 just too many spoons and stress. So, do you think you鈥檙e going to go and move to the co-op?
ROBYN - Well, I鈥檓 going to go and visit it with Henry on Sunday.聽
JAMIE - That sounds really cool.聽
ROBYN - Because also it saves a lot of money. It means that you are a part of a community where people value you. I doubt the person below me knows enough about me to value me or not value me, but I鈥檓 pretty isolated where I live. I have loads of friends, none of them live in the borough I live in, but where I鈥檓 going to鈥�
JAMIE - You鈥檙e almost exactly describing why I moved to where I live now. I鈥檓 on one road, the next road over, other side of the road, is where three of my friends live. My friend鈥檚 mum lives six doors up from them on the end. We know the neighbours both sides of my friend鈥檚 house; they鈥檙e lovely. So, there鈥檚 like a little community there. And the caf茅 was just over the road. The caf茅 was part of that community, so I didn鈥檛 have to leave that little bubble of people that I know and trust in order to go to the caf茅. Now the nearest place for me to go is a bus ride away, and that may as well on the bloody moon for how actually efficiently I can get there. So, I totally understand the urge to go and live near people who care. So, one of the things that I did I started accessing paid support. And the trouble with that is often the paid support was actually worse than just being left to my own devices. It was only when we had a structure, and let鈥檚 say a friend was doing something and we found a way that worked really well, we鈥檇 then get paid support to take over what the friend was doing. So, they were kind of duplicating things that were working, rather than turning up and going, 鈥淗ello, Mr Knight, what do you need help with today?鈥� because I have no idea how to answer that. But if one of my friends says, 鈥淵eah, we walk through the door, check his fridge, check he鈥檚 not on fire鈥� if we can give that to the carer then they can turn up and do the same things and they鈥檙e not asking me constantly for direction on what they should be doing, because I don鈥檛 know, I can鈥檛 remember.聽
ROBYN - I鈥檝e had paid support and what I鈥檝e found with it is you constantly have to interact with them all the time, and you have to have it in certain chunks, and you have to fit around their schedule. And actually the kind of help I need is often very small things like I鈥檝e broken a glass on the floor and I need someone to stand over me and prompt me to clear it up.聽JAMIE - Help clear it up safely.
ROBYN - I could clear it up safely but I need prompting, because it鈥檚 a new situation every time, because a glass always goes in different directions and it looks different, and it鈥檚 a lot of information processing. And glass is dangerous. So, I need somebody to watch over me for five minutes to make sure that I actually do it properly.聽
JAMIE - My support is much the same. One of the things we found is I have a support agency, and the support agency deal with my routine. They turn up at seven and I hide from them, and I only communicate with them via text message. We have written down the wall in my flat a support routine: food, pack bag for tomorrow, clothes for tomorrow 鈥� weirdly I can鈥檛 remember it because I鈥檓 trying to think in words rather than pictures. But the amount of control that I give them is to just get me through my routine. If I have a bath I completely lose track of time and they might need to prompt me two or three times to remind me to get out of the bath. The other thing that they can鈥檛 often prompt me with is, 鈥淗ave you washed the shampoo out of your hair?鈥� because the number of times that I鈥檝e slept badly for three days because I had a bath, forgot to wash the shampoo out of my hair, went to bed, didn鈥檛 realise that was the sensory problem I was having, and then had really bad sleep for three days. So, similar sort of thing, there鈥檚 lots of structured stuff which we need to do every day. For the unstructured stuff that just happens, when stuff goes wrong, that鈥檚 why being around people that I know is useful. My friend鈥檚 mum that lives up the road quite often I鈥檒l text her and go, ooh it鈥檚 gone wrong. Or if the flat鈥檚 not going to burn down I used to just escape the flat, go to the caf茅, and then chat to friends via the internet to arrange to get that thing fixed, or when person x is home from work they鈥檒l pop over and help me with this thing. So, the caf茅 kind of worked as like an escape pod as well which I could then solve other problems with. Losing the caf茅 is a right pain in the butt.聽
[Jingle - 1800 Seconds on Autism, with Robyn Steward and Jamie Knight.]
ROBYN - When I鈥檓 ill I can鈥檛 work out what the problem is. I know I鈥檓 ill because I know something鈥檚 wrong, something feels different and it doesn鈥檛 feel different in a good way, but I can鈥檛 necessarily work out what the problem is.
EMMA - There鈥檚 no doubt in my mind that I鈥檓 ill. I can feel everything. Your body stops working the same way.
ROBYN - Can you tell what鈥檚 wrong with you though when you鈥檙e ill?
EMMA - Yeah. Do you know when you have a headache?聽
JAMIE - Generally speaking yes, but it can be hard to work out it鈥檚 a headache, not a stubbed toe.
EMMA - If I have a headache I sit holding my head, I鈥檓 trying to get my head comfy, I鈥檓 putting maybe cold things on my head.聽
JAMIE - I don鈥檛. I just have a headache. Until I decide that I鈥檓 going to do something, like I don鈥檛 instinctively have those behaviours. It鈥檚 the same as you know when you have young children you know they need to go for a wee because of how they act, I don鈥檛 do that. I don鈥檛 do a wee dance. I just go, 鈥淚 need a wee!鈥� with no warning whatsoever.聽
EMMA - So, you don鈥檛 get that, there鈥檚 a really obvious wee feeling? Robyn, do you know what I mean?聽
ROBYN - Yeah.聽JAMIE - I get pain.聽
ROBYN - The other day me and my dad we went out for dinner and my dad went to the loo before we left, and so I was really focused on, oh okay I need to stay and look after my dad鈥檚 coat and my coat, so I鈥檓 just going to sit here and wait for him to come back. Anyway he came back, and about 20 minutes later we were walking and I was like, 鈥淚 really need the loo鈥�. And then oh no, I really have to go to the loo now, weighty.聽
JAMIE - How do you tell the difference between I need a wee and I鈥檝e got a tummy ache? Because they鈥檙e both down that sort of area.聽
EMMA - Totally different feelings. The wee feeling is in a tiny area of where you wee, and it feels ooh, what does it feel like?聽
ROBYN - Sharp.聽
EMMA - I wonder if the wee feeling is different for girls and boys. Boys in the other room, what鈥檚 the wee feeling like for a boy?聽
DAMON - Slightly sort of tickling or burning feeling I鈥檓 thinking. Pressure.聽
ROBYN - But do you feel that in your penis or in your tummy? [Laughter]
DAMON - I didn鈥檛 know I was going to have this conversation today.聽
ROBYN - You don鈥檛 have to answer anything that makes you uncomfortable.聽
DAMON - It鈥檚 just your lower鈥�
JAMIE - Well, needing a wee makes him uncomfortable, so it鈥檚 already an uncomfortable topic. The idea though is you鈥檙e connecting two things: this feeling means this thing.聽
EMMA - Yeah.聽JAMIE - Mine are just not that precise. And that鈥檚 why I almost died of gallstones because they鈥檇 go, 鈥淲here does it hurt?鈥� and I鈥檇 be like, 鈥淒unno鈥�.聽
ROBYN - The time I got diagnosed with IBS 鈥� I鈥檓 sure I told this story on the podcast before 鈥� but I wasn鈥檛 sure if I had appendicitis because I had pain somewhere in my stomach. So, I went to the doctors and they were like, 鈥淲e鈥檙e not really sure but go to A&E if you still feel like that in the evening鈥�. And I鈥檓 like, I鈥檓 not going to go to A&E. An autistic person by themselves in A&E, that doesn鈥檛 sound like a good idea to me.聽
JAMIE - Correct.聽
EMMA - Has that happened before, have you guys been to A&E by yourselves?聽JAMIE - Oh yeah.聽
ROBYN - Yeah.聽
EMMA - IBS is irritable bowel syndrome?聽
ROBYN - Yes, IBS is irritable bowel syndrome.聽
JAMIE - Not by myself; I鈥檝e never been to A&E by myself.聽
EMMA - So, what鈥檚 happened when you guys have been? What are the less good situations that have happened in A&E?
JAMIE - We鈥檝e got examples of this galore. Before I get into that, a little editor鈥檚 question: Ollie has taken me every time I had the gallstone problems; he would be amazing at explaining what happens. Because I don鈥檛 remember, because I was really broken by the experience.聽
EMMA - Okay, Ollie? You up for that?聽
JAMIE - Does Ollie want mic-ing and joining in?聽
EMMA - He鈥檚 coming.聽
JAMIE - Cool.聽
OLLIE 鈥� How can I be of service to you?聽
JAMIE - We are talking about times when I鈥檝e been to A&E and what happens in A&E. And as you have done that with me a lot I thought you might want to be on mic and explain some of it.聽
ROBYN - Hi, Ollie.
OLLIE - No worries. Let me just do a quick test, test, test.
JAMIE - Hey Ollie.聽
OLLIE - Hello.聽
JAMIE -What the hell happens when I go to A&E?
OLLIE - A&E is a perfect mix of things to break Jamie. It鈥檚 a combination of transitions, you go from crazy, annoyingly loud spaces to inside, to outside, to very bright. It鈥檚 a combination of you鈥檙e probably in hospital because there鈥檚 a problem and so you鈥檙e already low on spoons.聽
JAMIE - And I probably have no idea to be able to explain beyond ow, and pointing.聽
OLLIE - Yeah. And just from a sensory perspective they鈥檙e pretty terrible for the autistic person. So, what happens to Jamie is he will instantaneously become non-verbal, which isn鈥檛 particularly useful when you鈥檙e trying to do a medical diagnosis. And it just becomes an extremely difficult place to navigate. You can鈥檛 walk very fast, you can鈥檛 process, so it becomes extremely difficult.聽
EMMA - So, you literally can鈥檛 remember any of this Jamie?聽
JAMIE - Snippets. We did multiple trips to the hospital for gallstones. I can remember a doctor poking me and going, 鈥淒oes this hurt?鈥�
OLLIE - That was the first time we went to A&E and they didn鈥檛 know what it was. And the first time he poked you you completely shut down. And then he thought from that it meant that you were okay; whereas what he was expecting to happen was if you had a problem you would scream. But you don鈥檛 scream when people poke you in painful bits.聽
JAMIE - Exactly. So, he poked me, caused a huge amount of pain, and my body just turned off. I just stopped working for four days, something like that?聽
OLLIE - Yeah. So, that day he just basically shrugged and was like, 鈥淐ome back another day鈥�. And then by the time you were well enough to go back we had organised an ultrasound where they accidentally found that you had these gallstones the size of grapes that were going to literally kill you if you had a puncture.聽
JAMIE - Get them out pretty damn quickly.聽
EMMA - So, if you don鈥檛 remember going and you don鈥檛 present your pain in the same way how did you both know that you needed to go to A&E?
JAMIE - So, for the gallstone stuff what I started doing was I knew that my insides hurt so I鈥檇 say, 鈥淚鈥檓 in 10 out of 10 pain鈥� and I鈥檇 started running baths of only hot water and then lying in these baths so that I could get as hot as I could so that I could balance the pain on the outside with the pain on the inside and sleep. So, I鈥檇 taken to sleeping in the bath four or five nights a week.聽
OLLIE - That was like 18 months of two hours a night sleep if you were lucky. I remember that was basically Jamie at his least functional.聽
EMMA - And was there a massive summit going on with all your support people saying, 鈥淥h my goodness, what鈥檚 going on here? How do we figure this out?鈥�
JAMIE - Yes.聽
OLLIE - Kind of, but the problem is Jamie masks his pain incredibly effectively.聽
JAMIE - Because I鈥檓 not aware of it.聽
OLLIE - He doesn鈥檛 know he鈥檚 in pain; he doesn鈥檛 know to express that he鈥檚 in pain. We can just determine that something鈥檚 up. But something鈥檚 up might be, I really need the toilet, or it might be, I鈥檓 literally dying. And that鈥檚 one of the things that makes it very difficult to鈥� We did all feel very guilty about the fact that it took you so long to be diagnosed.聽JAMIE - It was 10 months of the real bad pain. And the thing with the gallstones is if it ruptures and it spews the infected stuff all over your insides you die before an ambulance can get to you. Two days before the ultrasound I was mountain biking in Wales, and if I鈥檇 fallen off I probably would have died and bled to death before anybody got to me internally.聽
OLLIE 鈥� I would like to reiterate we all feel very guilty about that.聽
JAMIE - That was fine. You didn鈥檛 know; we didn鈥檛 know. I have another example of how we can diagnose that Jamie鈥檚 got a problem. If I go and do something like a shower that normally takes, say, one, two spoons, and it takes four spoons, I know something is wrong because the amount of effort to do things gets really high.聽
ROBYN - And if I don鈥檛 want to do things that I normally enjoy doing normally there鈥檚 a problem. And yeah, I just have to be really careful about how much energy things take out of me.聽
JAMIE - There are the things that can be the biggest problem is that a mundane, easy to fix issue has to escalate to something quite big before it鈥檚 noticeable. And one of the ways that we get around this is Ollie, and all the other support people, we have almost like a debug routine where they will go, 鈥淗ave you eaten? When did you last go to the loo? Are you hot? Are you cold?鈥� They ask very specific questions that I can answer yes, no, by looking.聽
EMMA - We have loads of parents listening; is this a good thing for them to know about?聽
ROBYN - Yes, ask those specific questions. My mum and dad do the same thing.聽
OLLIE - Can I just chuck a quick one in? Rather than saying, 鈥淎re you hungry?鈥� it鈥檚, 鈥淗ave you eaten?鈥� because are you hungry is an extremely subjective one. And also with the sensory processing stuff it鈥檚 like, could be hungry鈥�
JAMIE - Could be.聽
OLLIE - But have you eaten is a fact.聽
ROBYN - Or when did you last eat.聽
JAMIE - Yeah.聽
OLLIE - Or, 鈥淗ow many calories have you had today?鈥�
EMMA - Have you learnt all of that, Ollie, from knowing Jamie? Is that where you鈥檝e learnt all of this? So, you don鈥檛 need to have some sort of qualification or go on a course or anything like that?聽
OLLIE - Absolutely. I have absolutely no formal, in inverted commas, training in autism care or care. It鈥檚 just about being around and caring for somebody鈥檚 needs and gaining an understanding of how they communicate.聽
[Music]
ROBYN - Well, I think we should rename this programme the Jamie Manual after all that. We鈥檙e really honest in these podcasts and I hope listeners get something from it.聽
JAMIE - Robyn, what would be the top tip in the Robyn Manual?聽
ROBYN - Give me plenty of processing time.聽
JAMIE - The exact thing we didn鈥檛 do when we asked you that question.聽
ROBYN - Exactly.聽
JAMIE - Subscribe to 1800 Seconds on Autism on 大象传媒 Sounds or wherever you get your podcasts from. And you can still email us at stim@bbc.co.uk.聽
ROBYN - Thanks for listening. Bye.聽
JAMIE - Bye.聽
[Jingle - That was 1800 Seconds on Autism.]聽