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This is a full transcript of 1800 Seconds on Autism: What鈥檚 your bedtime routine?, presented by Robyn Steward and Jamie Knight and released on 14 May 2020

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[Jingle - 大象传媒 Sounds: music, radio, podcasts. 1800 Seconds on Autism with Robyn Steward and Jamie Knight.]

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JAMIE - The cupboard is only 1.5m x 2m, and I鈥檝e got a to the millimetre plan for where everything is going, even the things on the desk will have little taped boxes to put them in so that they always align in the right place every time.

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SARA - Understanding our sensory profiles, understanding when we need a break, where have we been taught that? We are often learning that someone鈥檚 autistic, but we鈥檙e not taught it in schools.

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ROBYN - The texture of my pyjamas is very important.

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JAMIE - Oh yes.

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ROBYN - And sometimes I have my weighted blanket, my gravity blanket for a bit. And I often sleep under two duvets because I prefer the pressure.

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[Music]

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ROBYN - This is 1800 Seconds on Autism, a podcast about the highs and lows of autistic life with two autistic presenters, which is me, Robyn Steward and

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JAMIE听 - Me, Jamie Knight. We talk a lot about sleep during this episode, but please do try and stay awake. I鈥檝e also been allowed to talk about my new cupboard, so you鈥檝e got all that to look forward to as well.

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ROBYN - Please keep your messages coming; they all get read, even if we can鈥檛 always respond. The address is stim@bbc.co.uk. In the studio with us today are Lion.

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JAMIE - Roar!

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ROBYN - Support bat Henry, Jamie鈥檚 support person Ollie, and producer Emma.

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EMMA - Hello.

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JAMIE - Shall we start with our checklist, Robyn?

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ROBYN - Yeah

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JAMIE - So, we like to check in on our spoons, stims and intense interests at the start of each recording, this is just to kind of get an idea of how we鈥檙e both doing. So, just before we get into it too much spoons are a way in which I record my energy and a lot of other autistic people do. We start the day with a number of spoons, like ten spoons, and then we use them through the day and when they鈥檙e gone we are forced to stop completely. So, Robyn, how are your spoons today?

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ROBYN - I should just say they鈥檙e not actually real spoons.

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JAMIE - Physical.

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ROBYN - They鈥檙e metaphorical spoons. Anyway it says on the script that I鈥檓 to say, Jamie, it鈥檚 3pm. Except it鈥檚 not 3pm.

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EMMA - Okay, but you have to talk about your spoons first.

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ROBYN - Oh okay. It doesn鈥檛 say that in the script but yeah, okay.

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EMMA - No, Jamie says, Robyn how are your spoons.

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ROBYN - Yeah, it does, but then it says, Jamie, it鈥檚 3pm as we record. That鈥檚 what it says on the script. Anyway.

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EMMA - Never write down a time, that鈥檚 the answer to that question.

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ROBYN - I have five spoons.

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JAMIE - How many did you start with today?

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ROBYN - Seven.

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JAMIE - How many do you normally start with?

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ROBYN - 10.

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JAMIE - Oh, so a sleepy day.

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ROBYN - [Laughs] It鈥檚 because I went to bed at about three o鈥檆lock in the morning because it was Robyn鈥檚 Rocket last night, and I don鈥檛 normally do a podcast the day after. But we were running out of time to do this series so I had to do this.

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EMMA - Tell us what Robyn鈥檚 Rocket is?

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ROBYN - Robyn鈥檚 Rocket is a series of gigs. My lovely storage unit accidentally revoked my 24-hour access, so I had to take all the stuff home and then lug it up my stairs.

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EMMA - Summarise the storage unit thing: it鈥檚 a little place where you keep your stuff.

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ROBYN - Well, it鈥檚 quite a big place, but I鈥檝e just got a little bit. They sell you a storage room, and my storage room is 25 square feet.

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EMMA - And that鈥檚 where you keep all the stuff that鈥檚 not in your house?

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ROBYN - Yeah. I always pay everybody on the night, and I do it via BACS transfer, so I just sit and go through all the payment forms of all the crew and the artists and pay them. And then I had a lot of adrenaline because I鈥檇 been hefting all the boxes around, so I typed up all the feedback and I updated the spreadsheet.听

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JAMIE - There鈥檚 a great topic there for later about slowing down at the end of a busy day and trying to get to sleep.

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ROBYN - Yeah. And then I went to sleep, and then I woke up early to ring the self-storage people. Well, to be fair I didn鈥檛 plan on waking up early, but I had a dream about the storage place so I rang them when I woke up. And they offered me 20 quid, which I thought was quite rubbish compensation really. And then there were some things that Robyn鈥檚 Rocket needed that I thought well, if I don鈥檛 get them now I鈥檓 going to forget because the next one鈥檚 not until April, so I went off and got that. And then I thought I鈥檒l have a half an hour nap, and half an hour wasn鈥檛 quite long enough because it takes me ages to get to sleep, and I realised I was quite low on spoons. And I had pizza for breakfast, which I鈥檓 not sure that that was a great breakfast really, and now I鈥檝e eaten two Twixes.

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JAMIE - That鈥檚 a really long list of things.

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ROBYN - Yeah.

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EMMA - Woah, woah.

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ROBYN - Not a great day.

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JAMIE - That鈥檚 a really long list. I鈥檝e had about five spoons as well. I鈥檝e had quite a busy week and the travel this morning got a little bit disrupted, so we鈥檝e been rushing around a little bit. But now that I鈥檓 here and I鈥檓 sat down and all relaxed I鈥檓 pretty good.

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ROBYN - Stims are next on the list. Stims are normally repetitive movements, but also I think some people have vocal stims. It鈥檚 something repetitive. In the professional community around autism they are often described as repetitive routine behaviours, but the autism community calls them stims. It could be rocking, flapping or anything really, and they鈥檙e done for lots of different reasons, including self-regulation and for fun. Jamie, have you got any stims, new ones?

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JAMIE - Not any big new ones, although I have just realised I鈥檝e sat here wrapping this lovely headphone cable around my finger to the point where my finger hurts, and then unwrapping it for that lovely feeling of blood flowing back into my finger. Ooh, that鈥檚 probably a stim. It was nice. I should probably stop doing that before my finger falls off.

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EMMA - Yeah, maybe.

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ROBYN - Yeah.

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JAMIE - It seems like a good idea. Do you have any stims at the moment, Robyn?

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ROBYN - Not any new ones, no.

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JAMIE - Cool.

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EMMA - I think we get to talk about cupboards now.

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ROBYN - Yeah.

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JAMIE - Sorry, that鈥檚 my happy, excited, bouncy stim. So, last on our list is intense interests, the things which we鈥檙e currently super interested in. And I鈥檓 going to monopolise this one slightly because I finally got a cupboard. So, back earlier in the year I used to spend an awful lot of time working from the local Mothercare caf茅. It was really nice, it was really close to home. And then Mothercare closed and the nearest caf茅 is a bus ride into town, and then it鈥檚 much louder, much busier, and I have been struggling to get my work done. And then whilst I was visiting a company for a completely unrelated reason they mentioned they had some office suites available. They showed us a couple and I went, 鈥淥oh that鈥檚 a really nice cupboard, how much for the cupboard?鈥� So, we鈥檙e turning a cupboard into an office. It鈥檚 going to be pitch black and dark and tiny and I can鈥檛 bloody wait, I鈥檓 so excited for it. It鈥檚 going to be amazing.

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EMMA - Why do you want a cupboard?

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JAMIE - Because I need a place where I can work, where I can be private, so I can take confidential phone calls and have confidential chats with people, but is cheap and isn鈥檛 too bright and isn鈥檛 too loud. This cupboard is surrounded by three inches of insulation and soundproofing. It might actually be the most fundamental change in my life from the last few years, because right now a third of my spoons, half of my spoons some days, are spent just travelling into town and back safely. This will mean that all of that energy can go on to work, so I am super excited for my cupboard. The cupboard is only 1.5m x 2m so it鈥檚 only 4 x 5ft. But I鈥檝e got a little floor plan with everything: where my pot鈥檚 going, where the bin鈥檚 going, where the desk is going. I measured how wide my chair is. And I鈥檝e got a to the millimetre plan for where everything is going, even the things on the desk will have little taped boxes to put them in so that they always align in the right place every time. It will be so structured and perfect. There鈥檚 an element of comical/childish joy in this cupboard. It is seriously the most exciting cool thing in my life right now. Maybe that鈥檚 just a little bit, like, depressing because I have a cool job and I鈥檓 doing mountain biking and stuff, but oh my god, a cupboard! Robyn鈥檚 giving me the look that I think basically means, yes Jamie.

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ROBYN - That鈥檚 nice Jamie.

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JAMIE - Pat, pat on the head Jamie.

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ROBYN - Yeah, that鈥檚 nice. I鈥檓 glad you鈥檙e happy Jamie.

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JAMIE - The trouble is every time I start having long conversations about my cupboard everybody gives me that look at the moment. There鈥檚 not a lot to talk about, is there? It鈥檚 a cupboard.

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ROBYN - Maybe other people aren鈥檛 that interested in your cupboard but they鈥檙e happy that you are interested.

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JAMIE - Yeah.

ROBYN - And they鈥檙e happy for you just to talk about it and they don鈥檛 want to say anything that鈥檚 going to stop you because it鈥檚 obvious you get a lot of pleasure out of talking about it.

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JAMIE - When I talk to people about my cupboard a lot of people have gone, 鈥淚 wish I had a cupboard鈥�. A couple of people have said, 鈥淚 wish you were in the cupboard now鈥� and then it took me about five minutes to realise that that was a subtle dig at, Jamie please shut up now. I鈥檓 doing my best but it鈥檚 so good.

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

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JAMIE - It鈥檚 a small change, an environment thing of you鈥檙e walking round an office block and they鈥檙e showing you all these suites and you鈥檙e like, 鈥淣o, no, they鈥檙e all way too big, fancy, bright and horrible. But your cupboard looks amazing鈥�. It鈥檚 like seeing the world a different way, because I had to be able to see the potential that the cupboard had rather than the thing I was shown.

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EMMA - He鈥檚 still talking about the cupboard!

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JAMIE - Sorry, sorry, sorry, I鈥檒l stop on my cupboard now.

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ROBYN - But it鈥檚 all right because I didn鈥檛 have any intense interests to talk about. It鈥檚 time for a phone out where we call someone interesting for a chat. This time we鈥檙e speaking to Sara Harvey. Hi Sara.

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SARA - Hello there Robyn. And it鈥檚 Jamie as well?

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JAMIE - Hello. So, Sara is the autistic mum of an autistic child. On YouTube she鈥檚 known as Agony Autie and her channel has over 11,000 subscribers. One of the questions I鈥檝e got here is to ask you why the channel is called Agony Autie?

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SARA - It was supposed to be a spin on Agony Aunt, but it was also a double-entendre, which is I鈥檓 in agony from this environment, I鈥檓 in agony from the social stigma and I鈥檓 in agony from the anxiety it鈥檚 creating.

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JAMIE - It鈥檚 both literal and metaphorical.

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SARA - Yeah. But also I鈥檓 in agony because I have a physical disability called hypermobility. But instead of looking at us as the actual problem I look at the societal things that harm us like environmental factors, instead of why are we broken.

ROBYN - You mentioned harm, I just wondered if you could elaborate what that means to you, because you鈥檙e not talking about just physical pain.

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SARA - I鈥檓 talking about social; I鈥檓 talking about service cuts; I鈥檓 talking about a lack of access to peer-to-peer community; I鈥檓 taking about damaging myths that exist around autism.

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ROBYN - But non-autistic people I think they find it, they don鈥檛 understand how that harms people I suppose that鈥檚 what I鈥檓 getting at.

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SARA - Ah, so it harms us by for me it鈥檚 a lack of access to jobs, a lack of ability to have friends that understand you for you, and I think for me the biggest thing is isolation and the social public stigma, and also access to education.

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JAMIE - One of the ways that I鈥檇 phrase it is that short-term harm normally leads to bad long-term outcomes. A great example of one recently: an autistic friend of mine was unable to attend one of their lectures because the hall had really bright fluorescent lights.

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SARA - Yes.

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JAMIE - She then did worse in that module, even though she should have done fine. And she could directly point out, 鈥淲ell I missed those three lectures because I had migraines. The migraines were caused by the lighting, but they wouldn鈥檛 turn it off or turn it down鈥�. So, in that case her achievement on her course has been directly influenced by the harm unintentionally done by others.

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ROBYN - One of the points we鈥檝e got here, and this is kind of worded from a neurotypical point of view, but I think the heart of the question, like where the question is coming from, the intention is good: your son is autistic; are you guys, as in you and your son, similarly wired or do you have different sensitivities or you鈥檙e different? How do you make that work?

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EMMA - How would you have asked that Robyn?

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ROBYN - I鈥檇 have said, you have a child on the spectrum, are you alike in the way that you both experience autism or are you different?

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SARA - Yeah, I would have asked it like that too. I鈥檓 33 and my son鈥檚 eight, and I would always ask people, are you like your kid. Just because we鈥檙e autistic does that infantilise me straightaway? And I understand what they鈥檙e getting at, but autistic people are different at different stages in their life. We鈥檙e also different across the board within our community. So, the answer is yes and no. Yes, there are massive similarities between me and my son 鈥� I鈥檝e actually never met anyone so like me as my son in terms of the way he stims and hums and plays by imagining that there are things in front of him with his hands and making sound effects, so that鈥檚 echolalia, which is great for an artist if you want to be in movies. So, yes we鈥檙e similar. But we鈥檙e also very different, and our sensory sensitivities will be different because I鈥檓 more sensitive to noise some months, and light other months, and he鈥檚 the reverse so we鈥檒l bounce off each other. So, just because you鈥檙e autistic it doesn鈥檛 mean you complement each other sensory wise or even compatibility wise, because we will have different needs. And it鈥檚 about finding a balance with each other. I try to educate what are my son鈥檚 main priorities and needs, and then I try to show my son what are my boundaries and when is it for me to have time out. So, that鈥檚 about managing noise levels and space and recuperation, respite.

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JAMIE - I live with another autistic guy, and about half the time our needs conflict with each other.

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SARA - Exactly. We bounce off each other.

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JAMIE - The other half of the time we found giving things the right name has been quite useful.

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SARA - Yes.

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JAMIE - So, we say that we鈥檙e decompressing, which means I need to be alone.

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SARA - Yes!

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JAMIE - Versus hiding, which means do not interrupt me on pain of shouting at.

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SARA - Yes, yes, yes, yes, yes.

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JAMIE - We will literally say, 鈥淚鈥檓 going to go hide now, if you need me send me a text message鈥� or, 鈥淚鈥檓 going to go and decompress鈥�.

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SARA - This is healthy boundaries.

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JAMIE - Yes.

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SARA - It鈥檚 communication and it explains it鈥檚 not you, it鈥檚 literally not you, it鈥檚 me, but I need to go and decompress. We鈥檙e about that I鈥檝e done, what I鈥檝e done, what I鈥檝e done, because we鈥檒l have social anxiety and that avoidance may cause us anxiety. So, understanding our sensory profiles, understanding when we need a break 鈥� where have we been taught that? We are often learning that from other autistics, but we鈥檙e not taught it in schools. When it comes to school no wonder we can鈥檛 sleep at bedtime sometimes.

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ROBYN - We got an email last year from Chris who says: I have a one year old boy and sometimes it鈥檚 a really big struggle with him. I鈥檓 very sound sensitive, enjoy being alone almost as much as possible, I鈥檓 very sensitive to changes in my environment and need a very structured daily routine. I also work two jobs, so I can find it really difficult to be alone with him for long periods of time without me having a meltdown. Every time I try to research the topic all I get is answers for parents who have children with autism. I think it would be really awesome to hear someone talk about the other side of the coin and hear about the issues with being a parent and being autistic. Do you have any advice for Chris, Sara?

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SARA - Absolutely. I care for my son four and a half days a week, because me and the father are separate, and I鈥檝e just gone in to apply for adult social care. Not because I can鈥檛 look after my son, but because of the physical and social and sensory and mental health demands that I鈥檓 having, I need that bit of care for me when I鈥檓 in my alone time so that I can have more energy for when it comes to me being there for my son. Because the role of a parent is hard. This guy sounds like he鈥檚 sensory overloaded. The child鈥檚 one so the one year old will not be in control of any of the noises or a lot of what their impulses or wants or needs or desires, so it鈥檚 a very turbulent time for the baby, but also for the parent sensory overload and routine wise that all goes with a baby, it all goes.

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JAMIE - It sounds to me like they鈥檝e got an awful lot of demands if they鈥檙e also working two jobs and they need time to reach out.

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SARA - Absolutely. It鈥檚 like there鈥檚 nothing wrong with you saying, I need help. It鈥檚 not the baby needs help; it鈥檚 I need help so I can be the best听 that I can be for my kid. I would recommend ear buds, there鈥檚 nothing wrong with putting ear defenders on if baby is crying. That鈥檚 not you ignoring baby crying; that鈥檚 you being in the same room as baby but baby could be teething, so that could be 13 hours of crying. There鈥檚 nothing wrong with putting on some soothing music or ear defenders or asking friends to take shifts to help, if you have friends. Again, we鈥檙e isolated as a community.

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ROBYN - Just before me and Jamie talk about our routine, Sara let鈥檚 hear from you. I know you鈥檝e got a whole family night time routine; please tell us about it.

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SARA - Okay, well first of all I鈥檒l tell you what it used to be: I used to put my son to bed at 11pm when he was seven years old because he couldn鈥檛 get to sleep because he was anxious. And then I would maybe get to sleep at 4am, before getting up at 8am with my then husband to get my son ready for school, who is sleep deprived, we鈥檙e all sleep deprived. And that鈥檚 how it used to be: we all used to be out of synch and out of rhythm. And I would literally pace around trying to get rid of energy, rid of anxious nervous energy before sleep. I鈥檓 finally, after about three years 鈥� it鈥檚 taken a long time to iron it out 鈥� getting to bed about 10, half 10, 11 now. I鈥檓 sorry, I am proud. I have worked so hard to get to that point. And how can I when I鈥檝e got so much anxiety, I鈥檝e got trauma, yes I鈥檝e got sensory overload, yes we鈥檙e autistic, but at night time that鈥檚 when things run through your head the most. So, we made some changes in our environment to try and help with bedtime routines. Little things like: after six o鈥檆lock, which is tea, I light a candle, which is night time essential oils. And I say to my son, 鈥淲hat can you smell?鈥� and we do a sensory kind of, 鈥淚 smell lavender鈥�. Then a sensory bath, which is bath bombs, little bath paints, lots of different textures, candles, music. After the bath a story if my son wants to, or some free time for him to draw and play, but always letting him know, 鈥淵ou鈥檝e got 20 more minutes, you鈥檝e got 10 more minutes鈥� then light off and then go to sleep. But that took years.

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JAMIE - That鈥檚 not a million miles different to my bedtime routine.

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SARA - Yeah?

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JAMIE - So, my bedtime routine includes a bath. I also put my phone away, and I鈥檝e got a dedicated iPod Touch for in the evening.

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SARA - Fantastic.

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JAMIE - So, I鈥檒l sit in the bath, listening to podcasts or audio books, or watch documentaries on YouTube, that sort of thing.

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SARA - So, you make sure you can鈥檛 work. It鈥檚 that relaxation mode, not activation mode.

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JAMIE - Well, there鈥檚 another thing that I do which is probably a little bit strange, which is I always open a Note document when I get in the bath. It鈥檚 like the first thing I do when I get in the bath. And I write down anything that鈥檚 in my head at that point. Sometimes the notepad will be empty, but actually that鈥檚 quite useful because sometimes something will come out on the notepad that I hadn鈥檛 actually realised was a problem.

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SARA - Amazing.

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JAMIE - And then I can do something about it. We also refer to it as an itchy brain. For example if my flat is 80% tidy or 90% tidy I鈥檒l have a really itchy brain about all the things that aren鈥檛 done. So, sometimes running around my flat for 10 minutes fixing all the itchy brain stuff can also really help my sleep.

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SARA - But we got to this point of routine by not forcing it. So, we didn鈥檛 just turn around to my son one day and go, 鈥淩ight, it鈥檚 essential oils at six; it鈥檚 bath time at seven, and it鈥檚 a book鈥�. It didn鈥檛 just go boom, boom, boom. It was introduced slowly over time, what works, what doesn鈥檛, because different things work for different people. So, when my son is anxious I really encourage him, especially before bed, to draw; draw it out. He鈥檒l often scribble and write. Just let them have that extra time. So what if it鈥檚 now 10pm? It鈥檚 better than them tossing and turning until 2am.

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JAMIE - Sara it鈥檚 been really great to talk to you. Thanks for all of your input into this episode. But I think we have to start wrapping up now.

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ROBYN - We鈥檙e not actually going to wrap you up in wrapping paper or anything. It means that we鈥檙e going to finish the conversation.

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SARA - Please do, that鈥檒l be a nice sensory squeeze.

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JAMIE - Oh, we鈥檝e already gone off the rails. It鈥檚 been brilliant to speak to you. Chat to you soon.

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ROBYN - Thank you. Bye bye.

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SARA - Thank you. Bye.

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[Jingle - 1800 Seconds on Autism, with Robyn Steward and JAMIE Knight.]

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JAMIE - Robyn, I鈥檝e talked a bit about my sleep routine, do you have much of a sleep routine?

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ROBYN - Yes. I have a bath.

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JAMIE - I have a bath as well. It seems lots of people take baths to help them go to sleep.

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ROBYN - Yeah, I thought I was the only one. That is a joke. I didn鈥檛 actually; I know other people have baths. Anyway yeah, so I have a bath.

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JAMIE - Some people even have showers. It鈥檚 an amazing world out there, Robyn.

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ROBYN - They do. That鈥檚 weird, isn鈥檛 it, showers? No, showers aren鈥檛 weird; I鈥檓 just joking. Yeah, I have a bath and then I get into bed and the texture of my pyjamas is very important.

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JAMIE - Oh yes.

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ROBYN - And the weight. And sometimes I have my weighted blanket, my gravity blanket for a bit. And I often sleep under two duvets because I prefer the pressure. And I have Henry with me and I have a little night light that I put onto a very dim setting. I plug my phone in. I put the news on.

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JAMIE - I think we鈥檙e opposites on that. If I put the news on before I went to bed I鈥檇 be lying awake all night with my eyes open going, oh my god, the whole world鈥檚 about to end.

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ROBYN - No, even when I鈥檓 in Japan or New Zealand or wherever I like to go to sleep with a sort of vaguely familiar voice. Like the newsreaders, there鈥檚 a roster of newsreaders.

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JAMIE - Yeah, familiar; I get the same thing with audio books.

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ROBYN - Yeah

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JAMIE - I listen to a lot of audio books from the same鈥�

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EMMA - Narrator.

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JAMIE - Narrator, that鈥檚 the word I was looking for.

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ROBYN - Jamie, what does your bedroom need to be like for you to be able to go to sleep?

JAMIE - So, there are three things that help me sleep the most: the first one is textures. I鈥檓 really, really, really sensitive to the textures of things around me. If my sheets feel wrong or they feel greasy or they鈥檙e wet or they鈥檙e very cold then that will keep me well awake. The second thing is the room itself. My room has grey walls, a white ceiling and white skirting board so that I can easily feel how big the room is. Sometimes what happens to me is my bedroom can feel the size of a cathedral or the size of a shoebox, and that鈥檚 quite a scary change when it happens. So, in my room I have all these little coloured arrows pointing at the corners of the room that stop that effect from happening.

And then the third thing and probably the most important thing is my bed itself. So, I had a custom bed made several years ago and it鈥檚 got sides. You can climb in an out of it through a little gap, and it鈥檚 taller than me, so it feels really safe when I鈥檓 inside. And then I curl up in there and it really helps me feel safe. I do roll around a lot in my sleep and have seizures and stuff so it means that I feel safe in my bed, rather than previously where I felt like I was sat on this big open bed and I knew I was going to fall off, because I鈥檓 constantly falling off. When I was a kid we tilted my bed towards the wall so I wouldn鈥檛 fall off as much. But this way I鈥檝e got two solid sides and I can kind of use more of the bed without that constant dread of I鈥檓 going to fall over the side and wake up on the floor, again. So, I like my bed, it鈥檚 really good. Some of the best money I ever spent.

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ROBYN - I take some medication to help me go to sleep. It鈥檚 an antidepressant. Before I started doing that I used to just be up till one, two in the morning pretty regularly. And one of the things about taking the medication is it kind of guarantees I鈥檒l be able to relax and go to sleep.

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JAMIE - Okay, so that鈥檚 kind of managing the anxiety with medication, which kind of makes sense.

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ROBYN - No, I don鈥檛 know that it鈥檚 necessarily just the anxiety. I think it鈥檚 more complicated than that.

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JAMIE - Okay.

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ROBYN - Naturally I鈥檓 quite an anxious person, and I think what it does is it calms down the level of chemicals that are in my brain. But it鈥檚 not the anxiety of going to sleep or not being able to go to sleep; it鈥檚 just general.

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JAMIE - Baseline kind of day-to-day stuff.

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ROBYN - Yeah.

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JAMIE - I also take medication to help me sleep, which is a supplement called melatonin. And all it does, it鈥檚 the chemical in your brain that makes you sleepy, I take a very low dose of it and it helps me fall asleep. So, rather than taking three hours to fall to sleep I鈥檒l fall asleep in half an hour or 45 minutes. And I鈥檓 accessing that via a GP/medical process.

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ROBYN - You should always check with your doctor before taking any medication. Like you need to be monitored and you need to find what works for you, and if you鈥檙e taking other medications or you have other health conditions you need to make sure that what you鈥檙e doing isn鈥檛 going to harm you.

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JAMIE - I know there鈥檚 the phrase sleep hygiene; light, temperature, texture, they鈥檙e all important to me. But another part of sleep hygiene is also just trying to not make it an abrupt transition. We sometimes refer to it as the runway, so sometimes when someone says, 鈥淐an you do x?鈥� I鈥檒l say, 鈥淣o, I鈥檓 currently doing runway鈥�. And that just means that I鈥檓 landing and I鈥檝e got 100m to slow down and stop.

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ROBYN - Yeah, it takes me about two hours to get to the point where I can go to bed. Occasionally I鈥檒l do a job where I鈥檓 working in the evening till, like, nine and I get back at 10, and I鈥檝e got to be up in the morning at, say, ten, and I know that I actually need 14 hours in my house before I can leave. So, maybe I need two hours to settle, then I sleep for eight or nine hours 鈥� nine hours is quite good 鈥� and then be up for an hour before I leave the house. And if I don鈥檛 do that I find that my brain is just not as sharp as it normally is.

But I also, more and more as I get older, I just realise how much of a problem school was in that you have to go there for seven hours a day under strip lights, and you can鈥檛 go, 鈥淎ctually I鈥檓 just going to go and sit under this table in the dark for two hours鈥� or, 鈥淎ctually right now I don鈥檛 really feel like doing maths and maybe I鈥檒l do it later鈥�. But as an adult you have a lot more choices.

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JAMIE - Flexibility. And this actually overlaps quite nicely with the topic of sleep and employment. If I had to do a nine to five job and be up and working every day from nine to five I鈥檇 really struggle. But because my job is flexible around when I鈥檝e got energy I can make the most of that energy. So, rather than wasting half my spoons trying to focus when I can鈥檛 focus I can go away, I can sort out the things that are getting in the way, whether that鈥檚 doing a piece of tidying, eating. If I鈥檓 well out of structure and out of routine, going through something like my lunch routine, and then I can come back to work when I鈥檓 ready to focus and can make the most of my energy. So, I think they鈥檙e kind of related. Ironically worrying about work was one of the main things that ruined my sleep, and then my sleep being ruined made my work stuff even harder, so it kind of got into a vicious cycle.

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ROBYN - Yeah, I don鈥檛 think I could do anything other than be self-employed and stay flexible.

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JAMIE - Well, I am self-employed on other things. I鈥檓 not self-employed with the 大象传媒, but I鈥檝e got a line manager who understands how my energy works, so we actually get a really flexible, really useful working routine. So, there are options for flexible working, but generally in employment they鈥檙e less flexible. But it does exist, it is out there.

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[Music]

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JAMIE - This has been 1800 Seconds on Autism with Robyn Steward and me, Jamie Knight. Plus a bat, the Lion, Ollie and our producer, Emma.

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ROBYN - Just to prepare you next week鈥檚 episode will be the last one in series two. If you haven鈥檛 heard all of it there are nearly 20 episodes available now, including the short coronavirus extras. Please share the podcast with anybody you think might enjoy it, and subscribe to 1800 Seconds on Autism on 大象传媒 Sounds. Thanks for listening.

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[Jingle - That was 1800 Seconds on Autism.]

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