鲍鱼tv

This is a full transcript of the 1800 Seconds on Autism, presented by Jamie Knight and Robyn Steward, as broadcast on 26th May 2021.聽

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

[Intro]

ROBYN - I might be sitting on the tube and the tube goes, 鈥淢ind the gap,鈥� and I go, 鈥淢ind the gap.鈥�

JAMIE - When I get very spaced out or very tired I have a really hard time getting the words to actually come out of my mouth. Then when they do start coming out they don鈥檛 come out with the right tone, so I might sound very robotic or I might sound really annoyed when I鈥檓 not.

[Music]

ROBYN - They were like, 鈥淥h, I felt ignored, so I turned my camera off.鈥�

JAMIE - Neurotypicals are baffling sometimes.

[Music]

ROBYN - It鈥檚 the podcast that makes you think about how you think. Thanks for listening. I鈥檓 Robyn Steward.

JAMIE - And I鈥檓 Jamie Knight. Our support animals are Lion, the lion and Henry the bat, and they鈥檙e here to support us as always. So is our producer, Emma.

EMMA - Hi. I never know how to write that bit because I always think people are imagining bats flying around and lions roaring. But they鈥檙e not really though.

JAMIE - Yeah, that鈥檚 what Lion thinks he鈥檚 doing, you know. He is an inanimate toy, sadly.

EMMA - And Henry鈥檚 a bean filled bat.

ROBYN - He鈥檚 so cuddly. Anyway, on this episode we鈥檙e going to read and respond to some of your many, many emails. Thank you so much for sending them in. You鈥檝e been asking about people who are non-verbal and people who are minimally speaking. That鈥檚 how the autism community talks about it. Sometimes it鈥檚 called non-verbal and semi verbal by people outside of the community. But anyway, we鈥檙e going to chat about that, and we鈥檝e also had lots of questions from parents of autistic kids. So we鈥檒l be trying to answer those questions too. So, stay tuned.

JAMIE - Can you repeat those again, Robyn, because that鈥檚 really interesting actually. Which ones do you have, for verbal, non-verbal? Was it semi鈥�?

ROBYN - The autism community says non speaking and minimally verbal, right?

JAMIE - I come across non speaking and semi speaking a lot.

ROBYN - Oh right, okay.

JAMIE - And semi speaking is the one that I鈥檓 in the middle of adopting after, like, 20 years of using non-verbal and semi verbal. I like the distinction between mouth words versus speaking. One is about can you make words, and the other one is about can you communicate with words, which I think is a nice subtle distinction.

ROBYN - Yeah, that makes sense, yeah.

EMMA - I did also notice, Robyn, that when you were reading the script it actually said, 鈥淲e鈥檒l mop those up as well.鈥�

ROBYN - Yeah, I know.

EMMA - And you chose鈥�

ROBYN - I thought, I鈥檒l just say it how I鈥檇 say it, but I can say it like that if you want.

EMMA - No, no, it鈥檚 okay. So basically, I鈥檝e got some burning questions that, as we come to the end of the series I want to ask as we go along. And one of those is when you see mop up or something like that, what goes through your head and why do you make all those brilliant Robyn jokes about it? What鈥檚 going on there?

ROBYN - Well, I see a picture of you with a mop on your head.

EMMA - Me? Because I wrote the script you鈥檙e thinking of how an autistic listener would feel listening to you reading that script?

ROBYN - Yeah, I鈥檓 thinking that I want to be clear and make sure that what I鈥檓 saying is easy for people to understand and that doesn鈥檛 conjure up any unnecessary images. When people talk to me sometimes I get an image in my head and then I miss what they鈥檙e saying because I鈥檓 thinking about, oh, yeah, I鈥檓 sure that鈥檚 not what that means. Erm鈥� And then you have to, like, decode it. It鈥檚 like speaking in another language.

JAMIE - Do you put them in intentionally, knowing that we鈥檙e going to do it?

EMMA - I don鈥檛 usually put them in for effect, but sometimes when I sent it to Damon to sign up sometimes he鈥檒l鈥� Like the last time he put in, 鈥淧ut the frighteners up you.鈥� [Laughter] That鈥檚 the last time.

JAMIE - See? See? You know what you鈥檙e doing to get what you want out of us. You know, that鈥檚 the whole point of this, that鈥檚 why you鈥檙e the producer.

EMMA - I鈥檓 very much aware that I am a neurotypical producer on a podcast that is autistic presenter led. I have and I want a responsibility to be sensitive to that while still challenging you guys.

JAMIE - I think it鈥檚 great. It adds to the learning opportunity, it adds to the explanation that things are slightly different.

ROBYN - If you didn鈥檛 catch last month鈥檚 episode it was significant, and we had lots of concerned emails, as you might expect. It was all about healthcare and pitfalls if you鈥檙e an autistic person, and it was prompted by the fact that Jamie has been ill in hospital. Before we go any further, how are you, Jamie?

JAMIE - I鈥檓 pretty all right. Life is very strange. I spend 23 hours a day in bed, 鈥榗ause that鈥檚 the only place that is properly pain free. But I now have two beds, one to lie in during the day, one to lie in when, you know, I want to sleep. And I鈥檓 actually getting back to work. I鈥檓 starting to do new presentations and stuff like that again, and we鈥檙e just reengineering everything. Part of it is I need to make trade-offs.

So, for example, to do this recording I鈥檓 accepting that I鈥檓 going to be in pain a little bit later today, but the nature of my life right now is that there鈥檚 going to be pain, and pain killers aren鈥檛 going to fix the problem, so it鈥檚 making sure that the pain is worth it. You know, it鈥檚 just part of everyday life now. And I also know that I can make the pain stop. If I go and lie down for three or four hours and I stay in the right position the pain will go back to baseline.

EMMA - Gosh.

JAMIE - The amounts of pain involved are not astronomical, it鈥檚 equivalent to鈥� Imagine sitting on a very, very uncomfortable piece of Lego or something. That鈥檚 kind of like the baseline pain and when the pain gets higher, like it will later, it鈥檒l just feel like a very sharp piece of very uncomfortable Lego. So I鈥檓 not scared of it anymore, I know it鈥檚 going to come, I know why it鈥檚 happening, I feel in control of it, and once you feel in control of it the emotions around it kind of stop. It鈥檚 a thing I鈥檝e never experienced in my life up till now, and it鈥檚 taken me, you know, a month, six weeks, to learn how to do it.

EMMA - Is that because you understand your pain more clearly because of the new systems and all that kind of鈥�?

JAMIE - Exactly that. It was the ability to understand that there are multiple different pains going on and then to start pulling them apart and start seeing the patterns. So, for example, I have a constant pain in my tailbone that鈥檚 there all the time, that goes up and down, depending on where I sit, and I have a second pain in the tailbone every time I knock it where it effectively rings like a bell. So I鈥檝e understood all of the scenarios that made it ring like a bell and I鈥檝e taken them out of my life. And I鈥檝e not experienced that pain now for multiple days. And when I do catch my tailbone on something and it goes dong, I go oh, I know why I did that, I鈥檒l try not to do that again next time.

ROBYN - Do you know if this is going to be for the rest of your life, or will it get better so that you can ride a bike for longer than 60 seconds?

JAMIE - At this stage we have no reason to believe it鈥檚 going to get better. The nerves that are damaged aren鈥檛 going to heal, but my body will find ways to move around the damage. So, for example, I already have much better leg control than I had a month ago. The one area that we don鈥檛 expect any improvement is in my core control, in my tummy. So when I flop sideways that鈥檚 not going to get better, but what we can do is we can look at bracing and other tools like that, because once I鈥檝e mechanically fixed my pelvis to my shoulders everything else should work fine.

So I鈥檓 probably never going to run a marathon but I might get to the point where I can walk good enough for 100 metres, or 200 metres, and that鈥檚 enough to get out of the car and walk from the car to the swimming pool, for example. So it鈥檚 about having really realistic achievable goals and then slowly kind of having steady progress over time without getting upset or without getting disheartened on a bad day.

ROBYN - Do you know what caused the damage, if that鈥檚 an all right question to ask?

JAMIE - We do. Well, we know that it鈥檚 most likely to be due to an infection and it turns out that I have had a condition for three years which I should have gone back to the GP to start treatment for, and we didn鈥檛 go back to the GP. So I鈥檝e had an untreated infection for three years, but the reality of the situation is we鈥檒l never know what the root cause was.

ROBYN - Maybe you didn鈥檛 go to the GP because it wasn鈥檛 accessible?

JAMIE - I went to the GP with somebody from a support agency and the GP notes say that I was told to come back and I don鈥檛 remember. You know, I was quite spaced out and I鈥檓 assuming that the support agency lady never got around to telling someone that I was supposed to go back or they told me and expected me to remember and tell someone. Or it got written down in the notes system and then never got surfaced again. Continuous care is really hard. An important thing for me is understanding how this happened doesn鈥檛 change my emotions towards it. What has happened has happened, there鈥檚 no point in getting angry. You know, great, let鈥檚 say I get really annoyed and I try and sue the care agency, well that doesn鈥檛 do me any good, and it means that other people lose their care, so there鈥檚 no point doing that.

ROBYN - Oh yeah, I just meant maybe what we can learn from that is putting in place, like, a way of being able to record information and communicating it in a way that works for people. I have fairly regular contact with my doctor, like, every sort of three months. Part of the reason I do that is because I don鈥檛 want anything to be missed, but I also go to a lot of stuff with my mum quite regularly because I know that I might miss something. And so maybe it鈥檚 about having something in place.

JAMIE - Importantly, now I鈥檓 into continuous healthcare so I鈥檓 the same as you. I have an assigned GP who knows what he鈥檚 doing. I can call the reception and leave a message for the GP. I can make bookings with that specific GP and I鈥檓 going back, you know, every month. Every four weeks we鈥檙e making an appointment so that they can continuously keep on top of my treatment. I have now started treatment for the infection, and I tell you what, I feel a damn sight better now that the infection that I鈥檝e had in my system for, by the sound of things, years and years, is finally under control.

EMMA - We actually had an email from a mum, Angela, and she said that she knew that her autistic son was in a lot of pain, but the doctors didn鈥檛 and he was three out of ten on the pain scales and was chatty and polite. So she said to the hospital, 鈥淚f you鈥檙e not going to check for appendicitis can you give me a letter saying this isn鈥檛 appendicitis?鈥� So instead of writing her a letter they did an ultrasound and they brought him straight into theatre.

JAMIE - Oh. Without being rude, I wish people were more worried, because this is not uncommon. And I think a lot of parents of autistic kids already know this, that if you鈥檝e got an autistic kid who isn鈥檛 very good at communicating pain and they go, 鈥淵eah, I鈥檓 in pain,鈥� treat that as if they鈥檙e screaming. You know, it鈥檚 always better to over respond to a report of pain than under respond to it. And then the big issue is actually going to be with the medical people.

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

ROBYN - Jamie. A couple of people wrote in because they would like to hear more about the times when you鈥檙e not able to speak. So we had an email on the subject of speech from Lucy, a children鈥檚 speech and language therapist. Thanks for writing in, Lucy. She has rounded up the most popular questions really well in her email. She says, 鈥淚鈥檓 really interested to hear you talk about going from verbal to non-verbal, and back again.

JAMIE - Sure. So there鈥檚 a difference between speech and communicating. I normally am able to communicate, e.g. I know why it is that I want to communicate. The problem is when I get very spaced out or very tired I have a really hard time getting the words to actually come out of my mouth. And then when they do start coming out they don鈥檛 come out with the right tone, so I might sound very robotic or I might sound really annoyed when I鈥檓 not. What I鈥檝e kind of learnt is that when my speech starts going a bit tricky it鈥檚 easier to swap to using assistive communication because that way at least I can be understood and my messing up the tone or getting the words in the wrong order isn鈥檛 going to make communication go a bit bad.

It鈥檚 kind of ironic because 80% of my life is spent in the situations where I鈥檓 verbal, so one of the reasons why this podcast works is that I鈥檝e known all of you for probably the best part of ten years. You know, I鈥檓 literally having a podcast talking to friends, so that鈥檚 nice and easy. And when I鈥檓 at home it鈥檚 friends who are visiting or people that I know really well and I鈥檝e generally got lots of energy so my speech is good, but if I go into town and it鈥檚 busy and it鈥檚 loud and it鈥檚 bright, and I鈥檓 very focused on not walking into traffic, not getting lost, you know, not getting confused or muddled, my speech is one of the first things that I start to struggle with. So that鈥檚 why I end up defaulting to using the AAC in the caf茅 because it鈥檚 a much better use of energy than trying to fight my speech when I may or may not be able to effectively communicate with words. Does that answer the question at all?

ROBYN - Yeah. So, Lucy鈥檚 got some questions, and there鈥檚 one particular I want to ask. 鈥淲hen you鈥檙e not able to speak do you think in language?鈥� Like if I was going to buy a sandwich and I was going to ask for a sandwich I鈥檇 be thinking in my head, I would like a tuna and cucumber sandwich, and then I would say that out loud. So are you thinking in pictures or words or how does that work?

JAMIE - Er鈥� I鈥檓 trying to think and remember. I tend to point a lot. Pointing and thumbs up can get you a really long way in a caf茅 by the way. I do and I don鈥檛. When I was in hospital recently, part of why I became scared was because the internal monologue in my head had gone, and that鈥檚 normally a sign that it鈥檚 going to be a very long time before I speak again. And I tweeted about it, the fact that I鈥檓 not hearing words in my head anymore and I used to. And a lovely lady from the Great Ormond Street Hospital said, 鈥淥h, try these exercises which are all about unprompted speech.鈥� So a friend of mine would count, 鈥淥ne, two, three,鈥� leave a gap, and I would blurt out, 鈥淔our,鈥� and they would go, 鈥淔ive, six, seven, eight, nine.鈥� 鈥淥h, ten.鈥�

So it was about getting sounds back in my head. That tends to only happen when I鈥檝e had a really prolonged period in a really bad environment. For most of the time when I鈥檓 not using speech but I鈥檓 still communicating I know what it is I want to communicate, it鈥檚 not as simple as, is it words or is it pictures, it鈥檚 in my head in some form. I might not be able to put it into a sentence but I know what it is that I want to communicate and then I just have to find a way to communicate it.

ROBYN - Lucy also asks, 鈥淲here does the speech go do you think?鈥�

JAMIE - I would say it鈥檚 the other way around, which is, you know, when I wake up in the morning if I鈥檝e got enough spoons I can communicate, and if it鈥檚 a really good day I can communicate verbally. As I stop having enough spoons the words get slower and slower and less often and further between and I communicate less and less verbally. It鈥檚 a very interesting neurotypical question to ask where does the speech go. It鈥檚 not like there鈥檚 a box of words, and it鈥檚 like, oh, I鈥檝e lost my box of words. It was in my back pocket, I鈥檓 sure it was.

EMMA - You know what, it actually was a strange question to me as well, but I think I understand why. So Robyn, could you read the first line of the email in the script? So she says something like, 鈥淚 always thought it was a straight line.鈥�

ROBYN - 鈥淲ith the children that I see I have always thought I am helping them to progress along a linear journey from non verbal to verbal. I hadn鈥檛 really considered that once properly developed the verbal skills can leave.鈥�

JAMIE - I鈥檇 say that it鈥檚 the difference between having a skill and having enough energy to use the skill.

EMMA - I mean, you鈥檙e quite used to it now, but how does it feel when the mouth words don鈥檛 come?

JAMIE - It used to be terrifying. Like, it really used to scare me because I was worried they鈥檇 never come back again, and when I鈥檝e had periods in my life of, you know, 17 months of no speech when I was in my mid 20s. I think as a teenager I went three years with basically no speech. And it was because the environments that I were in were not good. So that鈥檚 when I was in supported living or just after I had the gallstone surgery and I was鈥� I couldn鈥檛 go home, I was living in a friend鈥檚 spare bedroom and I didn鈥檛 have support and I didn鈥檛 have routine. So I had no energy, and that鈥檚 part of why my speech was really poor.

So these days, now that I understand that it will come back, just give it a bit of time, and now that I also have really effective communication that isn鈥檛 speech it generally doesn鈥檛 actually matter. With my friends we swap between speech, sign language, AAC, using online apps like iMessage or Telegram, willy-nilly, we don鈥檛 actually care whether I鈥檓 verbal or not verbal, it doesn鈥檛 matter, as long as I can communicate.

EMMA - I mean, I know you, but I think a lot of people listening will be shocked to know that you went through three years without speech, because every time you do a podcast you are incredibly eloquent and articulate. And I know you鈥檝e just talked about the environments and why that happens. To you it鈥檚 a spectrum but it feels like such a contrast between the two.

JAMIE - It can be. It can be shocking to people. But I was going to ask Robyn. Robyn, how about your speech? Do you find that your speech varies, or is it kind of really consistent for you?聽

ROBYN - Yeah, it鈥檚 interesting you ask that. So sometimes, I mean, I didn鈥檛 speak until I was, like, two and a half and then I did a lot of echolalia-ing, so copying things I鈥檇 heard. And now I find if I鈥檓 very stressed sometime I鈥檒l echolalia, which is quite鈥� It鈥檚 sort of funny but it鈥檚 also quite irritating.

JAMIE - Could you explain what that means for people who don鈥檛 know the term?

ROBYN - Well, it means I might be sitting on the tube and the tube goes, 鈥淢ind the gap,鈥� and I go, 鈥淢ind the gap.鈥�

JAMIE - You echo it?

ROBYN - Yeah, I echo it, [Laughs] as if I鈥檓 having a conversation with the announcer voice. So it鈥檚 quite instant, rather than it being delayed like something I watched on TV. But also I think sometimes if I鈥檓 very stressed I get a stutter and sometimes in the morning my processing might be a bit slow, and so someone will speak to me and it might take me a little bit longer to come up with a response. I can almost feel the words in my throat and it鈥檚 just not quite got there.

JAMIE - Oh well, yes.

ROBYN - Sometimes my mum goes, 鈥淥h, don鈥檛 speak to me then,鈥� and I鈥檓 like, 鈥淣o鈥� Hello.鈥�

JAMIE - Give me a moment, it鈥檚 all speeding up. It sounds pretty familiar to me, it鈥檚 just that feeling might last three hours for me if I鈥檓 in the wrong environment, rather than 30 seconds

EMMA - I have another burning question which I think leads on from this conversation that we鈥檝e just had. I feel a bit uncomfortable about asking this, but you talk so cleverly and sensibly about a situation that went wrong and why it went wrong and how one would fix it. I mean, why could you not do that at the time, like, in the middle of the thing going wrong? Why were you unable to sort of figure out how to move forward then?

ROBYN - Because we were overwhelmed.

JAMIE - Yeah, there鈥檚 just too much input, too much thing. It鈥檚 the same as, you know, everybody gets overwhelmed when they鈥檙e in the moment, but I鈥檓 pretty sure most people don鈥檛 do their best accounting, for example, whilst they鈥檙e in the middle of a car crash. You know, you鈥檝e got so many things coming at you so quickly that you just don鈥檛 have the time that you need in order to process things. Or you鈥檙e reacting on instinct. When I was in hospital a few weeks ago and I vaguely understood what was going on and everything was happening so quickly, you know, nurses were turning up to give me injections and then I鈥檇 still be reeling from the injection at the point where somebody turned up to do something else. So I never had the time that I needed to get back to my baseline and then build up from there.

EMMA - Robyn, is that the same for you?

ROBYN - Yeah. Definitely I have to be very conscious about, particularly around sensory issues with medical stuff, like, really balancing how much sensory information there is. So, like, when I had my fingernail taken off I had my noise cancelling headphones with me and I had a can of Pepsi Max with me and I had my favourite jumper on. I had a lot of things in place to be able to manage the overwhelming sensory input, and that kept me calm. But I鈥檝e only learnt that from experience, from just knowing that I can get really overwhelmed by too much sensory input, and sometimes I just need to as much as possible sort of create a cocoon around myself so I can manage the sensory input.

JAMIE - From what I鈥檓 hearing from Robyn it鈥檚 like part of the reason she could deal with somebody pulling her fingernail off was because she was wearing the right jumper.

ROBYN - Yeah, exactly.

JAMIE - To a neurotypical person that must sound very alien, but to me I鈥檓 sat there going, yeah, yeah, I can totally get how that would help. Good idea. Ten out of ten. I鈥檇 do that as well.

ROBYN - Yeah. I do think it鈥檚 important to just point out that not all autistic people have as many sensory issues as me and Jamie do, like everyone is different. That鈥檚 just worth saying.

EMMA - Yes.聽

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

JAMIE - Lots of parents of autistic children have been writing to stim@bbc.co.uk which makes a lot of sense, because that鈥檚 our email address, you know, that鈥檚 how they鈥檙e getting in touch with us. They have many kind words about our podcast but they also often ask for our advice. We鈥檙e very happy to offer advice, but please remember you need to speak to a professional. We鈥檙e two people on a podcast giving some advice based on our experiences. This isn鈥檛 definitive; please don鈥檛 sue us.

ROBYN - And obviously every autistic person is different so we can鈥檛 tell you exactly what your child or another person in your life may be thinking or feeling, because we鈥檙e not them.

JAMIE - Bingo.

ROBYN - We鈥檝e had lots of healthcare emails. One mum told us about her autistic daughter who has been hospitalised with an eating disorder. Another wrote about waiting for a diagnosis for her son, who she recently brought home from university to detox. And there鈥檚 also a lady called Pippa, whose 12 year old son has not been in school for over a year. All the usual professionals are involved in helping him to return, but Pippa recognises that part of it might be that he has had no structure during the pandemic and she wonders how best to reintroduce a structure. 鈥淚 have started slowly with a whiteboard where I have written down what is happening each day,鈥� Pippa writes. 鈥淲ould a now, next and later board be a good next step, or is there an in between? I don鈥檛 want to overwhelm him.鈥�

EMMA - With lots of exclamation marks. She really, really, really, really doesn鈥檛 want to overwhelm him.

JAMIE - So, a now, next, later board would be a really good thing to do, and I also try and keep now relatively concrete, next a little bit vague, and later, as vague as I can make it so that I have enough wriggle room that my brain won鈥檛 obsess on one thing and then suddenly have problems when it needs to change. I鈥檇 actually find a whiteboard covering everything that鈥檚 going to happen in a day more overwhelming than now, next and later, because there鈥檚 more information on a what鈥檚 happening today versus what鈥檚 happening now, what鈥檚 happening next, what鈥檚 happening later. There鈥檚 less information there, and it comes with a rough idea of when.

EMMA - So now, next and later is literally a board with now, next and later and a very simple sentence of what is going to happen.

ROBYN - Or a picture.

JAMIE - Or a picture. So, for example, my now is podcasting. My next is going to talk to Ollie, and my later right now is dinner and resting. So, you see what I mean? Like now is really specific, the podcast I鈥檓 on as we speak. Next is a rather vague, go walk to鈥� Well, hobble, you know, toe walk to the lounge and chat to Ollie, and later is the even more vague, some sort of dinner, some sort of resting. When I get to the next step, when I go and talk to Ollie I鈥檝e done the now, so now I鈥檓 on the next and then I鈥檒l start defining those later steps more.

ROBYN - I have a weekly board by my door. It鈥檚 an A4 board and it has the days of the week written on it, and then I just write one or two or maybe three or maximum four I think, things that are happening each day. So it doesn鈥檛 tell me everything, you know, like lunch and breakfast and do your washing and stuff, but it does tell me things like meetings or like this podcast, that鈥檚 a big thing. I also have some nice magnets that I use for, like if I鈥檓 going on a train - it feels like forever since I went on a train - but I do have a train magnet to put on a day that I鈥檓 going on a train. And the Noun Project is a really good source of icons.

JAMIE - Yeah, it has really great icons. I use them in all my presentations.

EMMA - Oh, okay. The Noun Project?

JAMIE - Yeah.

EMMA - Right.

JAMIE - Yeah, and literally the website is, thenounproject.com.

ROBYN - The Noun Project鈥檚 a website where you type in a word, like book or horse, and it will give you a selection of pictures to choose from and then you can just copy and paste it into a document.

JAMIE - On today鈥檚 show we鈥檝e talked lots about structure and how we approach structuring our days. If there鈥檚 anything you鈥檇 like to add please email us at stim, S-T-I-M @bbc.co.uk. We鈥檇 love to hear from you.

[Jingle: 1800 Seconds on Autism, with Robyn Steward and Jamie Knight]

JAMIE - One of the discussions I had with somebody recently was around professional personas, and the fact that they drive me crazy. Like if I鈥檓 working with someone I have to work with the real person, not with their professional persona. If I鈥檝e annoyed them I need them to say, 鈥淚鈥檓 annoyed with you because,鈥� I don鈥檛 need them to start dropping me hints in an email or trying to be really subtle about it or giving me, like, a sentence that鈥檚 really carefully constructed to imply that I might have annoyed them. I need them to be really blunt with me.聽

ROBYN - Yeah, why do people do that?聽

JAMIE - I think neurotypicals do it to try and make things go smoother, because they have this really strange idea that conflict is inherently bad. I think conflict, well handled, builds trust. All of the people around me I鈥檝e had massive arguments with, but I also know absolutely that even if we have a massive argument it won鈥檛 matter, it won鈥檛 affect the relationship and we鈥檒l find a solution.聽

EMMA - Do you find that neurotypical people are prone to this more than autistic people or is it as problematic in both sides?

JAMIE - In my experience, yes. One of the reasons why I like working with other autistic people is I鈥檓 not spending half my time trying to guess what the hell they鈥檙e trying to tell me. If I annoy one of the autistic people on my team I will have an email with the subject line, 鈥淚 am annoyed at you,鈥� and it will explain why, [Laughs] so it鈥檚 fine.

EMMA - Because we did have an email, and I wish I had it in front of me. Can I just see if I can find the email quickly?聽

ROBYN - Recently I had this thing at work where I was on a Zoom call and I was doing a Jamboard and there were quite a number of people and various people who had different needs and I accidentally missed one of the professionals in the meeting when we were taking a poll, and I genuinely didn鈥檛 realise that I鈥檇 missed them. And there were a lot of people with a lot of support needs, and so I kind of thought this professional would be鈥� I didn鈥檛 think I had to worry about them, kind of thing, I thought that they would speak up. And then we did another poll and then again I missed them, but because they hadn鈥檛 said anything the first time I didn鈥檛 realise I鈥檇 missed them and then they turned their camera off and then they turned their camera back on and I was like, 鈥淥h hello,鈥� and they were like, 鈥淥h, I didn鈥檛 get a vote,鈥� and I鈥檓 like, 鈥淥h, I鈥檓 so sorry.鈥� And they were like, 鈥淥h, I didn鈥檛 get a vote with the other one either,鈥� and I鈥檓 like, 鈥淥h, I鈥檓 really sorry.鈥�

JAMIE - Had they assumed it was deliberate?聽

ROBYN - Yeah, but then they were a bit aggressive about it, you know, like micro aggressive about it. You know, they were like, 鈥淥h well, I felt a bit hurt,鈥� I鈥檓 like, 鈥淏ut I鈥檝e said I鈥檓 sorry.鈥� They were like, 鈥淥h, I felt ignored so I turned my camera off.鈥�

JAMIE - Neurotypicals are baffling sometimes.聽

ROBYN - But for me, like I felt really upset in the situation.

EMMA - Yeah, sure. That was a stressful, upsetting situation, Robyn.聽

ROBYN - But I felt upset because I really tell people, you know, please, if I ever do anything socially wrong, I have autism, it鈥檚 not natural to me, and so please tell me straight away. And then when I did tell them that I was sorry, and I really meant it, and they were still like, 鈥淥h, well I felt a big ignored.鈥� And then when I said it again later they were like, 鈥淥h well I鈥檓 a bit sensitive.鈥� And I鈥檓 thinking, but you鈥檙e a professional in this situation.聽

EMMA - Yeah. Can I tell you the email? I just think it鈥檚 a brilliant email, so she says, 鈥淭hank you for making my favourite podcast,鈥� and very nice stuff as well, but then she says, 鈥淚 was wondering, what do you do when you have to spend a lot of time with neurotypical people? And how do you make friends with neurotypical people, especially when they don鈥檛 make any sense?鈥澛�

ROBYN - I tell them I have autism and that sometimes I make social mistakes and maybe sometimes I might come across as rude, but I absolutely never want to hurt anyone鈥檚 feelings or be rude and that as an autistic person I have to take responsibility for learning about the social world of non autistic people. So if I ever do anything wrong or rude or anything that comes across in a negative way please tell me right away so I can say I鈥檓 sorry and learn from it and try again.

EMMA - I just worry that people will tell you something that鈥檚 not actually necessarily true. Do you know what I mean? Like they鈥檒l say that something was wrong because they felt wronged by it, when actually it鈥檚 not necessarily wrong, it鈥檚 wrong to them.

ROBYN - I mean, in that situation, if I鈥檝e done something that鈥檚 hurt someone else then that鈥檚 not okay. Just because I have autism it doesn鈥檛 mean I鈥檓 allowed to hurt other people, definitely not, I have to say that I鈥檓 sorry and I have to really mean it. That鈥檚 really important to me. And then afterwards I might talk it over with a range of non autistic people to try and understand what happened and if this is particular to that person or if it鈥檚 a wider thing, and to try and formulate some rules so I don鈥檛 make that mistake again.聽

JAMIE - Me and Robyn have very different approaches to work with neurotypicals. I鈥檓 amazed and impressed. How do I deal with neurotypicals? 90% of the time I don鈥檛. I avoid them and most of my team are autistic in work. You know, the only neurotypicals I interact with often are Emma and Damon, and I find that a lot of the time I don鈥檛 let myself go into situations where neurotypical people have any power over me, because I know that when I do that they tend to screw it up.聽

EMMA - Oh, God. I am so honoured, Jamie.聽

JAMIE - Literally the reason this podcast is possible is that I鈥檝e known you and Damon for so long that I trust you both. If we had a whole new producer come in who I鈥檇 never met before the podcast, I鈥檇 struggle to speak.

EMMA - Yeah.

JAMIE - Thank you for listening to this episode of 1800 Seconds on Autism. And also thanks for all of your brilliant emails. We read every one of them but we can鈥檛 respond to them all.

ROBYN - The next episode will be the last episode in this current series. Thank you very much for listening, and if it鈥檚 your first time and you like what you鈥檝e heard then please subscribe to our podcast on 鲍鱼tv Sounds or wherever you get your聽 podcasts from. Twenty-three previous episodes are already available there. They鈥檙e all meaty鈥� Hmm, well no, they鈥檙e suitable for vegetarians. They鈥檙e all quite detailed and they all go into fantastic depth apparently. I鈥檓 not sure the one about Kate Fox with the penis jokes really goes into that much depth to be honest.

EMMA - Well if you want to talk about depth, Robyn, you know?

JAMIE - [Snorts]

ROBYN - Yeah, but I mean, there was no penetration involved. [Laughter]

[Jingle: That was 1800 Seconds on Autism]