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This is a full transcript of 1800 Seconds on Autism: Meltdowns and shutdowns, presented by Robyn Steward and Jamie Knight and released on 23 April 2020

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

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ROBYN - It鈥檚 like being one of those little toys that come in a cereal packet and you鈥檝e been dunked in a Coke bottle that was sitting on the table with the lid on. Then the Coke bottle gets shook up and the lid gets opened and all the bubbles rush past you.

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JAMIE - I should probably mention, I鈥檝e had a boyfriend for 10 years and we鈥檝e lived like 130 miles apart for five years, and our relationship has never been better.

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ROBYN - I鈥檓 just going to have a flap break. [flapping] That鈥檚 better.

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JAMIE - Hello. You鈥檙e listening to 1800 Seconds on Autism, a podcast about the ups and the downs of autistic life. I鈥檓 Jamie Knight.

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ROBYN - And I鈥檓 Robyn Steward. In this edition we鈥檙e talking about meltdowns and shutdowns. It鈥檚 a bit of a tough listen in parts, as we share some experiences you might not have heard autistic people talking about before. We chat to Shona, an autistic mum with autistic children who struggle with meltdowns at school. And we speak to Johnny who鈥檚 in his 60s and didn鈥檛 understand his debilitating shutdowns until a recent autism diagnosis. This episode is longer than usual because of a miscommunication with the producer. Both of us had put aside too much energy for recording the episode so when she, Emma, tried to send us home early we were still all revved up and really did not want to stop talking.

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JAMIE - In the extra time at the end of this podcast we open up a conversation about hurting ourselves during meltdowns, which you may or may not want to listen to with children. But we hope it is enlightening.

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ROBYN - In the studio with us is Jamie鈥檚 plushy lion, called Lion, and my support bat called Henry. We start as usual with our wellbeing checklist. Spoons are how we measure energy. Stims are stimulating movements we find ourselves doing, and intense interests are the things we spend most of our time thinking about at the moment.

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EMMA - Is it working? Do we like the checklist? Are we interested in keeping going with the checklist?

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ROBYN - Well, Jamie鈥檚 definitely going to like the checklist when we get to the intense interests part, because I have something interesting to say.

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JAMIE - Oh!

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EMMA - Okay, well let鈥檚 go with it on this occasion.

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JAMIE - Shall we start with spoons? How are your spoons today, Robyn?

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ROBYN - I鈥檝e got seven/eight spoons.

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JAMIE- How many did you start with today?

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ROBYN - About seven.

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JAMIE - Oh, wow.

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ROBYN - I had a nap.

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JAMIE - Ah, naps are awesome.

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ROBYN - Yes, I gained some spoons.

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JAMIE - I think I鈥檝e got a solid five or so, and I probably started today with eight but we went out for food before we arrived, and it was very loud and I probably lost too many spoons. But I鈥檝e eaten lots of chocolate since, so I should be high on sugar and Coke for the next like鈥� I mean cola, not coke, coke. But I should be high鈥� I didn鈥檛 do like two fat lines before starting. [laughter]

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ROBYN - Okay. How about your stims, Jamie? Have you got any new ones?

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JAMIE - Not so much, although I鈥檝e got a new jacket and the new jacket has a label that we cut, but the label鈥檚 got a little bit left and very occasionally my neck rubs it and I do like a dance-y hands thing and I look like I鈥檝e been electrocuted. And it comes at all the most inappropriate times so like everybody鈥檚 being really quiet because there鈥檚 a dramatic part on the TV and I go 鈥淎rgh鈥� in the corner. But apart from that it鈥檚 pretty good. Yourself?

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ROBYN - No, not really. I want to talk about intense interests.

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JAMIE - What have you got? What have you got? What have you got?

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ROBYN - So, I鈥檝e built a DMX control with an arduino.

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JAMIE - Ooh!

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EMMA - What does that mean.

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ROBYN - So, an arduino is a microcontroller. It鈥檚 a really slimmed down computer that you can program yourself basically.

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JAMIE - And DMX is the standard for lighting control at a theatre setup.

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EMMA - Okay, so that鈥檚 usually Jamie鈥檚 thing, to do some sort of big technical thing. I mean, none of those words make any sense to me. Do you think you鈥檒l be able to have a conversation that I can understand?

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ROBYN - Yes.

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JAMIE - What鈥檚 the problem you鈥檙e trying to solve?

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ROBYN - I have a light that has 12 channels and I had a DMX mixing desk, but it has eight faders and it has three pages and so you had to go to the second page for faders nine, 10, 11 and 12. I decided I wanted to have what are called potentiometers. It鈥檚 just a knob for controlling鈥�

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JAMIE - Dials, basically.

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ROBYN - Dial. Yes, a dial.

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JAMIE -听 So did you wire the arduino up to the DMX module and then just have the potentiometers being checked by the program every now and then? What position they鈥檙e in and then send that value.

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ROBYN - Er, no. Not quite.

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JAMIE - Oh, how do you do that then?

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EMMA - So how do I break into this conversation and do producer-y things like move you on without being really rude?

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JAMIE - Just be rude. It鈥檚 probably the best way to go.

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ROBYN - I just wanted to tell Jamie what I did with the code because he asked me.

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JAMIE - It鈥檚 really cool but鈥� But we can talk about this forever, so we should probably move on to the rest of the show.

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EMMA - I have a feeling there鈥檚 going to be a long conversation about this after.

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ROBYN - Yes.

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JAMIE - Can I have a copy of your code?

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ROBYN - Yeah, I鈥檒l just copy and paste the code, because I don鈥檛 even need to explain to you what I did, you鈥檒l be able to see.

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JAMIE - Awesome!

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EMMA - So, in a rather big change of subject鈥� Jamie?

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JAMIE - Sorry, I just need to let my brain slow down from arduinos for a moment. In this episode we鈥檒l talk about some of the more trickier aspects of being autistic which are meltdowns and shutdowns. I always love when Robyn defines stuff. So, Robyn, how would you define a meltdown and how would you define a shutdown?

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ROBYN - Obviously everybody on the autism spectrum is different, but as a rough guide, meltdowns look like a tantrum but are not a tantrum. They could involve shouting, pushing, hitting, kicking, throwing things, slamming doors鈥�

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JAMIE - All very dramatic big things.

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ROBYN - Yeah.

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EMMA - That just sounds like a tantrum. What makes them different?

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ROBYN - Well, tantrums are when you鈥檙e not in control of something and you want to be in control of it, but when you have a meltdown it doesn鈥檛 matter what the other people do around you, like even if you wanted something and they鈥檙e given to you that鈥檚 not going to make a difference, because a meltdown is at the point of no return.

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JAMIE - It鈥檚 the point where your body is just kind of reacting to something and you鈥檙e having a really hard time keeping your body in control. And then the frustration, emotions, anxiety, panic, all flood out in one ginormous explosion of stuff.

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EMMA - Okay.

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ROBYN - Shutdowns are really important to talk about because they can be just as difficult for the autistic person as a meltdown, but they look more subtle, so meltdowns sometimes people describe as someone externalising their behaviour but shutdowns are like internalising your behaviour. And it鈥檚 really important that you make sure the person doesn鈥檛 have epilepsy because they might be having an epileptic absence, but some autistic people do just stop responding to their name, they might pull their hood over their head, get under a table, like just withdraw from the situation.

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JAMIE - It鈥檚 like my head gets full of treacle. And even if people are talking English at me I can be staring at them hearing every word and just having no idea what it means. It鈥檚 very, very, very scary, and that鈥檚 why shutdowns can sometimes cause panic attacks. I think we鈥檒l talk about shutdowns more later. Let鈥檚 go back to meltdowns for a bit. Robyn, when was the last time you had a meltdown?

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ROBYN - In May or June when I got the PIP letter. So everybody that is on Disability Living Allowance is being moved onto Personal Independent Payment. You鈥檙e not really being moved onto it, you鈥檙e having to apply for it because Disability Living Allowance stops existing. I鈥檝e got multiple disabilities because I have cerebral palsy and autism and the visual stuff. And when I got the letter I was really freaked out by it because I鈥檝e heard so many horror stories about people鈥檚 experiences and I was worried that they might not understand that like there鈥檚 a lot of things I can do for myself but there鈥檚 a lot of things I really can鈥檛 do for myself reliably. I do get though fatigued, and it can happen quite quickly. The thing about fatigue is that it鈥檚 something that builds up over time so I was just worried that they wouldn鈥檛 understand and I had a meltdown. And that鈥檚 probably the first one in years.

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JAMIE - And so let me guess a little bit. Is part of that because it鈥檚 a big unknown thing, you can鈥檛 avoid it. It鈥檚 going to demand energy鈥�

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ROBYN - Oh, I think the uncertainty was a big thing, like not knowing what was going to happen, but also I catastrophised and was like, well I might not have any money, which obviously wouldn鈥檛 actually be true. But it just, you know鈥�I was frightened.

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JAMIE - I find that I get a lot of meltdowns or shutdowns or other difficult things when my autonomy is limited, where there is something I have to do or I鈥檓 being forced to do something or there鈥檚 something I can鈥檛 escape. Because I know whether I鈥檝e got energy for it or not and if I don鈥檛 have energy to handle a big demand I know that my body鈥檚 going to take days or even weeks to recover. So maybe it鈥檇 be a little bit like saying to a neurotypical person, 鈥淥h, that鈥檚 fine, you can have your pay cheque but it鈥檚 currently on top of Ben Nevis. Once you go and get it from the top of Ben Nevis of course you can have it.鈥� And you鈥檙e sat there going, 鈥淚 can鈥檛 climb Ben Nevis today, but I need to buy food and pay the mortgage.鈥� 鈥淲ell your pay cheque is just there, go and get it. I don鈥檛 understand why it鈥檚 so hard.鈥� Those sort of situations where neurotypical people are applying pressure and demands that they don鈥檛 understand we can鈥檛 meet, that鈥檚 like ideal meltdown territory for me.

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EMMA - Are you okay to do this?

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ROBYN - Yes, it鈥檚 fine, yes.

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EMMA - Are you sure?

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ROBYN - So long as you can鈥檛 decide that I can鈥檛 have Henry because he makes a sound.

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ROBYN - I like his sound. His sound means we know he鈥檚 here.

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ROBYN - Yes, I know.

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EMMA - I would never make you part from Henry for the podcast, that would not...

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ROBYN - But you might say, oh but you can鈥檛 keep moving Henry, but I need Henry and鈥� because when you edit there might be a bit of bean rustling.

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EMMA - It鈥檚 fine. I鈥檒l probably leave it in because you鈥檙e using鈥�

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ROBYN - It鈥檚 kind of cute.

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JAMIE - You鈥檙e you and it鈥檚 part of you.

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EMMA - Yeah.

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JAMIE - Now me, rocking backwards and making the chair squeak, that鈥檚 driving me crazy, let alone anybody else. I鈥檓 trying my best not to, but you know what it鈥檚 like.

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EMMA - Yeah. If you feel able, Robyn, let鈥檚 talk about the鈥�

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ROBYN - Yeah, I don鈥檛 mind. I鈥檝e got Henry.

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EMMA - Okay, you鈥檝e got Henry.

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JAMIE - I鈥檒l do a lead in for that. So Robyn, last time you had a meltdown how did it feel?

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ROBYN - It鈥檚 like being one of those little toys that come in a cereal packet and you鈥檝e been dunked in a Coke bottle that was sitting on the table with the lid on. Then the Coke bottle gets shook up and the lid gets opened and all the bubbles rush past you and if you鈥檙e heavy then you sink. So it鈥檚 really overwhelming. And it鈥檚 like you know sometimes they do those things with magnets where like they get a sphere and they put magnets in it and when there鈥檚 no electricity the magnets just sit on the bottom, but then when there鈥檚 electricity if there鈥檚 a magnet at the top they all get drawn upwards? And well, it鈥檚 kind of like that. It鈥檚 as if the internal bits of my body are sort of鈥� like my blood vessels are trying to jump out of me.

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JAMIE - Yeah. So how does that feel like physically in your chest and your arms and the rest of your body?

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ROBYN - Well I often end up hurting myself in those situations because I guess I just have to get rid of the pressure somehow. And I don鈥檛 really have any awareness of anything apart from that this is a really unpleasant experience and I really want it to be over and I can鈥檛 see any way that it鈥檚 ever going to be over.

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JAMIE - Meltdowns are surreal, partly because the frustration at the fact that a meltdown is happening can help fuel the meltdown. Because it鈥檚 not something I want either; meltdowns are horrible. So one of the things that I鈥檝e been doing that really helps me to tolerate them or get them to pass less destructively is I understand that the bad part of a meltdown always takes about 45 minutes. So if I鈥檓 starting a meltdown I鈥檒l quite often start a 45 minute timer. That helps me remember that this will stop, that my body will start feeling better again soon. I kind of need to separate how my body is feeling from how Jamie is feeling and just let the body do what it鈥檚 got to do and then kind of come back to it later.

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EMMA - Robyn, that sounds like an incredibly Jamie thing to do. Is that something you could do or鈥�?

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ROBYN - No, I don鈥檛 think I could do that. The nearest I can do is ring my mum and basically the thing is that I鈥檓 not really going to take on board anything that she says, I kind of just need to shout at somebody. But it鈥檚 not because I鈥檓 angry with my mum, it has nothing to do with my mum whatsoever, it鈥檚 just that she鈥檚 the only person that won鈥檛 get cross with me.

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JAMIE - You need a way to vent. A way to let the pressure off.

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ROBYN - Yeah, I need to tell somebody how frightened I am and I need to communicate. All they need to do is listen. She鈥檚 the only person that would listen to me and know that this is going to be over and it鈥檚 not pleasant right now. But I used to have meltdowns a lot more but then when I started taking antidepressants I found that actually once my anxiety was reduced they鈥檙e very rare now.

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JAMIE - For me I find that variation, things changing are a key cause of meltdowns. So someone might look at a meltdown and go why is Jamie meltdown-ing over the fact that a chair made a squeaky noise? No, no, that was just the final straw. The actual trigger was that the taxi was late this morning and that we had a different driver and I didn鈥檛 know what the lesson was going to be that day. Or we turned up to one classroom and they weren鈥檛 there so we moved to a different classroom and I was ready to sit in a specific seat and my plan had been changed on me. The final straw was a squeaky chair or something I couldn鈥檛 stop my body鈥檚 reaction to. But often the root cause of the meltdown is lots of change. As I鈥檝e got older and I鈥檝e had more autonomy I鈥檝e been able to make decisions about change in my life, and generally speaking, unless something is really important I always leave myself an exit path so that if it goes wrong I can exit well before a meltdown occurs.

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

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JAMIE - It鈥檚 time for our phone out today. We really like these. We would do a phone in but we鈥檙e not live on air, so we phone out to people instead. Let鈥檚 talk to someone who knows lots and lots about meltdowns. Shona Murphy, are you there?

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SHONA - Yes I鈥檓 here. Hi guys.

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JAMIE - Hello.

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ROBYN - Shona is an autistic mum to autistic kids. She has a masters degree in autism from Sheffield Hallam University where her focus was on what the experts call challenging behaviour, but what鈥檚 often described in the autism community as behaviour that challenges. Shona, could you tell us from your research about what the signs before a meltdown might be?

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SHONA - So I think they鈥檙e different for everyone, but in my case if I鈥檓 starting to get really stressed I stim a lot with my leg, so my leg will bounce up and down, and I have a stim that I do with my hand, which I do a lot when I鈥檓 not even stressed, but then I might do it really fast and much more of it when I鈥檓 starting to get stressed. I don鈥檛 think many people would notice, but people who know me well will recognise those signs. In fact I didn鈥檛 even know of those signs myself until when I got diagnosed with autism I started to learn so much more about myself and I started to recognise stims and things which means I鈥檓 more able to look after myself if I can recognise when I鈥檓 getting stressed. With our children, we know them as parents better than anybody else. Also, we might be able to predict when a meltdown is coming, so I find that I鈥檓 much better at being able to avert them, whereas at school it would just be seen as the child being naughty or running away or not complying. These are all seen as challenging behaviour and really it could be just because of really high anxiety and stress and someone being on the verge of a meltdown which could eventually become a meltdown and it just looks like somebody鈥檚 being badly behaved.

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JAMIE - One of the things we discussed early is that as adults we have more autonomy over our lives so we can start engineering out those like low level causes of stress and then the amount of meltdowns go down. Sometimes I refer to it as like having a budget for variation or a budget for things, and then having it agreed with the people around me that when I say, 鈥淣o, no, I鈥檓 really out of spoons and I need to stop now,鈥� that they listen rather than go, 鈥淥h, just a bit more. One more thing.鈥�

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SHONA - Yeah. When children are at school, because this is where you see a lot of meltdowns, and I did research on autistic parents who home educate their autistic children, and the home ed community in Sheffield, and that鈥檚 where I am from, it鈥檚 full of autistic families. And I think part of that is because schools are so inflexible, the staff don鈥檛 know about autism, so a lot of the reactions to stress just get interpreted as challenging behaviour and the kids get in trouble and then they end up being even more stressed. It鈥檚 like a vicious circle of anxiety and stress. And because they鈥檙e so misunderstood you end up having to take your child out because people don鈥檛 give the right support or any support.

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JAMIE - And you can鈥檛 just watch them continue to spiral and spiral and spiral when you know what the problem is.

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SHONA - Yeah. And people always say, 鈥淥h you鈥檝e got to fight for support and you have to fight for this,鈥� and you do, it鈥檚 true, but it takes a really long time. Like we were at the stage where we knew it was going to take over a year to get what鈥檚 called an EHCP, it鈥檚 like a statement.

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ROBYN - Education Health Care Plan.

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SHONA - Yeah, exactly. To get the right support for them. We knew it was going to take well over a year, so what are you meant to do in the meantime, let your child continue with this high level of stress? So we couldn鈥檛, so we did home education, which a lot of families do, and then we tried to get the EHCP in the background. At the moment if my child gets stressed he鈥檚 allowed to go outside and jump on the trampoline.

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JAMIE - When I was at my second secondary school I used to have a red card that I could put on the table and leave the room.

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SHONA - So sometimes the child can be supported in a mainstream school, but then there are some children who are just never going to be able to cope with that number of people in that environment.

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ROBYN - And also you鈥檝e got to have teachers and kids that are willing to embrace it, because some parents of non autistic kids and some kids and some teachers and some support staff might think that being able to go and jump on the trampoline is rewarding particular behaviours, but actually for that person it鈥檚 a way of regulating.

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SHONA - Yes. I know about myself now, I鈥檝e got a lot of self-awareness, but a lot of children will have no clue why they鈥檙e feeling stressed, they won鈥檛 know it鈥檚 because of the noise or the lights.

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JAMIE - Or worse, they鈥檒l be told that feeling stressed is itself being naughty, which is one of the things that took me literally 10years to learn how to tell people to listen to me or jog on. Grr!

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SHONA - We鈥檙e all at a stage now that we have got the knowledge and the self-acceptance, but when you don鈥檛 have that knowledge and you just see everybody else seeming to cope fine and you don鈥檛 know why it鈥檚 really hard for your self-esteem. You think that it must be a problem with you.

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ROBYN - Yeah, exactly.

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SHONA - So it鈥檚 why it鈥檚 really great when you start to learn about autism to then find other autistic people and realise that actually there is nothing wrong with you, you just process things differently and that can cause extra challenges.

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JAMIE - If there was one thing that you wish other parents knew about meltdowns and challenging behaviours what would it be?

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SHONA - Once you figure out what the causes are and you change the environment then they get a lot easier because you can avoid them. Don鈥檛 think of it as bad behaviour, think of it much more like anxiety attacks, something that can鈥檛 be controlled. It鈥檚 not completely true that it can鈥檛 be controlled because you can teach meltdown behaviours in a way, so not smashing things up but instead I鈥檝e tried to teach punching pillows for example. It took a long time but eventually we started having pillow punches rather than throwing iPads.

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JAMIE - Brilliant. Thank you for your time, Shona, it鈥檚 been really good to talk to you.

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ROBYN - Thanks.

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SHONA - You鈥檙e welcome.

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JAMIE - So something that Shona touched on there was behaviour redirection. She phrased it as from throwing iPads to punching pillows, but I actually have something similar myself. When I鈥檓 starting to go into a meltdown I kind of have a hierarchy of things, so like the first thing that I avoid is people. So if I鈥檓 getting to the point where I鈥檒l be violent towards somebody else or hurt somebody in some way that is an absolute no, no. The redirection from that is to try and redirect it to objects. So if I鈥檓 going to hit something make sure I鈥檓 hitting an object, and preferably a soft object, and then the third鈥�

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ROBYN - Not Lion though.

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JAMIE - Not Lion. No, I鈥檝e never hit Lion. That would be horrific for my mental health. So then the next thing is if I can鈥檛 redirect to an object I will often redirect into self-injurious behaviour. Not self-harm, importantly, but self-injurious behaviour. So I might bite the back of my hand or hit myself really hard in the head because it starts to bring that sensory feedback cycle in. It鈥檚 better that I hurt myself than hurt something that somebody else values. To me it鈥檚 better that I have a few bite marks on the back of my thumb than I break a window.

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ROBYN - Yeah, definitely. It really has to actually hurt for it to work. Like it鈥檚 no good if you just sort of bash your head gently, you have to like really whack it.

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JAMIE - Yeah. But even then it can be almost like hitting the reset button. It鈥檚 not necessarily pleasant for other people around me to witness, but it鈥檚 one of the ways that I can have a meltdown without anybody knowing, in that I鈥檒l go hide in my bedroom and I鈥檒l have a full meltdown, but because all I鈥檝e done is hurt myself rather than break anything or hurt anybody nobody knows about it.

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ROBYN - I鈥檓 just going to have a flap break. [flapping] That鈥檚 better.

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EMMA - [laughs] Do you mind me laughing at your flap break?

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ROBYN - No. It鈥檚 quite funny.

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JAMIE- I love the, 鈥淭hat鈥檚 better,鈥� afterwards. It鈥檚 just so happy.

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EMMA - Are you okay, Robyn?

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ROBYN - Yeah, I just needed a flap break.

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EMMA - Why do you think you needed a flap break?

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ROBYN - Because normally I worry about going through the script and keeping to time and finishing on time and so I鈥檓 deliberately not looking at the clock. But it鈥檚 costing me a lot of energy to do that because normally I like to know when things are going to happen and when they鈥檙e going to end. Even if it鈥檚 something I like, I like knowing that it is going to end. Because I鈥檓 not doing that I鈥�

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JAMIE - It gets redirected into flaps because it鈥檚 a little bit stressful? Yeah, I know.

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ROBYN - Yeah, so the flapping sort of expels some of the pent up energy.

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EMMA - So basically I said try not to worry about the length of time things are happening and just leave it to me to figure out things.

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ROBYN - Yeah, you said it鈥檚 your job, yeah.

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EMMA - We will have to have a think on how we can make that easier for you.

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ROBYN - Well no, it鈥檚 all right because this is only really a short amount of time in a recording studio, and then me and Louisa, we鈥檙e going to Pizza Express.

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JAMIE - Also, a couple of flaps halfway through is way better than being super stressed all the time.

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ROBYN - Yeah.

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[Jingle: You鈥檙e listening to 1800 Seconds on Autism]

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ROBYN - Okay, let鈥檚 do another phone out. I love phone outs.

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JAMIE - Me too.

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ROBYN - This time to Johnny鈥� Profane?

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JAMIE - That鈥檚 an amazing name.

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JOHNNY - Yes, that鈥檚 a stage name, yes.

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EMMA - Ah, a stage name.

听

ROBYN - A musician living in Indiana. Oh, what time is it in Indiana?

听

JOHNNY - It鈥檚 five hours difference from you guys.

听

JAMIE - So we鈥檝e mentioned it a few times, but for those who aren鈥檛 aware, shutdown is when all of the emotions are too high and you kind of go very quiet and withdrawn or you internalise the feelings. And a meltdown is when it鈥檚 all too big and all the energy and all the feelings explode out of you in a way that everybody can see, like getting very angry or getting very loud or running away.

听

ROBYN - Do you have meltdowns or shutdowns, Johnny?

听

JOHNNY - Yeah, sure, yeah. You want an adult meltdown? You want a child shutdown? I mean, I鈥檝e got a memory going way back. I鈥檓 almost 67.

听

ROBYN - Is there a difference between your meltdowns and shutdowns that you had when you were a child versus the ones you have as an adult?

听

JOHNNY - Oh yeah, well that鈥檚 a really good question actually, because now, remember this is the child remembering, and I no longer have contact with my family of origin, but as a child I don鈥檛 remember the meltdowns that I have now. They鈥檙e fairly classic, you know, a sudden change in mood, pacing, repeating the same words over and over again, that kind of thing is very classic, but as a child I don鈥檛 believe I did. I might be wrong. But what I do remember though are angry outbursts, kind of observing my adult behaviour. I think what had happened is early on I learned not to have meltdowns and to try to avoid them by becoming angry about something in the moment.

听

JAMIE - Like redirecting it from one thing to another thing.

听

JOHNNY - Yeah. Somehow internally I had a warning that something was about to happen, and then I would find some flaw with the person I was with or anger about鈥� You know, frustrated about scheduling or why can鈥檛 I get that toy, those kinds of things I remember. The difference between meltdown and shutdown? In a shutdown, I mean, it鈥檚 fairly obvious. I kind of lose my language ability. It鈥檚 as if my brain freezes. It can be very complete. I can lose connection with the surroundings and only see bright white light, but more frequently what happens is I begin to stammer, I search for words, become increasingly frustrated, largely because I can no longer communicate. And that kind of exhaustion that causes the brain freeze. If the embarrassment is bad enough, sometimes it becomes more of a depression and I鈥檓 depleted for a long period of time.

听

ROBYN - Did you say the embarrassment or the shame?

听

JOHNNY - Yeah, I did. When you lose control of yourself, when you鈥檙e not the person you think you are, that character you may have adopted or something like that to function, it鈥檚 intensely embarrassing. You know, I鈥檓 relatively intelligent, you can hear that, and I have a vocabulary and it鈥檚 what鈥檚 gotten me through my life. There are so many other areas I don鈥檛 function in so to lose that ability is beyond panic.

听

JAMIE - The slipping of the mask and kind of falling into fight or flight response.

听

JOHNNY - But it鈥檚 more than the mask, it鈥檚 more than the personality, like I say it鈥檚 a total kind of shutdown, it鈥檚 a freeze.

听

JAMIE - I tend to experience it like I鈥檓 slowly losing control of my body and all the things that I try and not do like react to bright lights or start on noises I start losing control of that and my body is slightly defeating my mind in controlling what I鈥檓 doing, and it is terrifying.

听

JOHNNY - Right. Yeah, I mean basically inside there鈥檚 still鈥� even as I鈥檓 freezing up like that there鈥檚 a sense of knowing. I may lose my language even internally but there鈥檚 a sense of knowing what I should be doing.

听

ROBYN - I don鈥檛 think I鈥檝e met an autistic person that doesn鈥檛 experience after meltdowns or shutdowns kind of embarrassment or shame, and because they鈥檙e something you can鈥檛 control, it鈥檚 like an epileptic seizure, like you wouldn鈥檛 want or expect somebody with epilepsy to feel embarrassed that they had an epileptic seizure because everybody knows that you can鈥檛 choose when you have an epileptic seizure, they鈥檙e just something that happens. And meltdowns and shutdowns are the same and nobody would choose to go through that because it鈥檚 really unpleasant, but sometimes it feels like society tells you that you should be able to control this and if you can鈥檛 you鈥檙e somehow deficient.

听

JAMIE - Exactly that. Or one of the ones that used to get into my head is I鈥檇 be told that I was being naughty or that I was, you know鈥� 鈥淚f you keep choosing to prolong this,鈥� and I鈥檓 like no, I鈥檓 not鈥�

听

ROBYN - Oh yeah, they always think it鈥檚 a choice. It鈥檚 a load of rubbish, it鈥檚 not a choice.

听

JOHNNY -听 Something you said earlier made me think about, when we talk about meltdowns, my main motivation at that point is largely to take care of everybody else in the room. Because early on somehow, way back as a child I got the message that I was a hurtful person and that my mouth and so forth could really hurt others around me. So I experience the onset of a meltdown or loss of control as extreme care, watching even more than you do all the time, every word, trying not to speak if at all possible, that kind of thing. And what I find exhausting about them is this carefully watching the loved one who鈥檚 nearby me, any stranger, pretty much anybody, trying to make sure I haven鈥檛 harmed them in something I鈥檝e said, largely. I have occasionally been violent. In a larger picture, I mean, any interaction from me with another human being, even my wife who I have bonded like I鈥檝e never believed was possible with, is tiring, largely because I鈥檓 hyper-vigilant the whole time I鈥檓 with her, thinking ahead what I鈥檓 going to say, reviewing what I have just said, watching her face to make sure I haven鈥檛 said something wrong. And as a result I pretty much need as much recovery time after being with her or any other human as I spend with them. If I鈥檓 with you half an hour I鈥檓 going to go off and recover for half an hour.

听

ROBYN - My script says that you鈥檙e married to the love of your life but you don鈥檛 live with her. How does that work?

听

JOHNNY - Well, it works really great. [laughs] We met, believe it or not, over Facebook. We shared a number of interests, and it鈥檚 one of the things that actually did work out. And I came out to Indiana to live with her and the first three to four years were tumultuous, it was a lot of things thrown in at once, and at that time I did not know what was going on with me, I did not know I was autistic, I simply knew I was different than anybody else I knew in my life. Well, a little over three years ago we separated and it was my belief that we were going to have to separate for good, not because I didn鈥檛 admire her or respect her, desire her, but because I couldn鈥檛 make it work. I couldn鈥檛 handle the pain, I couldn鈥檛 handle the pain I was causing. And in a brief separation, about two months, we discovered that we were extremely happy with each other, extremely in love, but what we had to do was modulate how much time we spent together. I can be exhausting to be with, it鈥檚 true. The intensity, the repetition, all that kind of stuff, and I of course get tired fairly quickly. So it works really well for us. I go home, I make my bread, I do whatever my special interest of the day is. Play my music, write, whatever, and I鈥檓 refreshed when I see her again and that makes it possible for us to have a marriage.

听

ROBYN - If I had a partner, which I hope I will one day, I鈥檇 like it if we didn鈥檛 live in the same house or the same flat.

听

JAMIE - I should probably mention, I鈥檝e had a boyfriend for 10years and we鈥檝e lived like 130 miles apart for five years and our relationship has never been better.

听

EMMA - So it鈥檚 a thing then.

听

JOHNNY - And we spend most of our time together, that鈥檚 the thing. It鈥檚 not just a marriage on paper, it鈥檚 a real marriage, but the need for me to be in a space where I鈥檓 not hyper-vigilant, I鈥檓 not even in the other room and very aware of whatever sounds are going on, I really need that complete collapse time, I guess I鈥檇 say. And we鈥檝e had to make big sacrifices to make it work for us. I mean, neither of us have a great deal of money, both of us are on retirement,听 and in the US retirement is laughable, so we鈥檝e had to use a lot of programmes to make it work for us here, but it is a solution where we鈥檙e finally experiencing, not just happiness but, you know, I personally am experiencing joy for the first time in my life largely for any extended period of time.

听

ROBYN - Ah.

听

JAMIE- That sounds wonderful. Thanks for your input, Johnny.

听

ROBYN - Thanks, Johnny.

听

JAMIE - It鈥檚 been brilliant to talk to you.

听

JOHNNY - Thanks guys, I really enjoyed it.

听

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

听

ROBYN - We鈥檙e about to talk about some really personal things that work for us and seem logical to us when we鈥檙e having a meltdown. We talk about hurting ourselves deliberately. Please remember when you鈥檝e met one autistic person you鈥檝e met one autistic person. Not everyone is like us and we鈥檙e not giving official advice here. What we do hope is that by getting an insight into our way of thinking it might help you to begin to understand yourself or your children or somebody that you support. Now, with that warning in place, I hope you get something from the last part of the podcast, a part where our producer nearly blew a gasket with worry, whatever that means, and remember, do not hurt yourself or try to damage yourself in any way.

听

EMMA - Robyn, would it be useful to know how long we have left?

听

ROBYN - I know that we have one hour and five minutes left.

听

EMMA -We were going to have to do lots of scripty things at the end of this, but I didn鈥檛 get the time to write them, so we have maybe five minutes left to do recording and then we can relax. So is that useful to know?

听

ROBYN - I wish you鈥檇 told me that before.

听

JAMIE - Have you been pacing for like鈥�? I鈥檝e been doing the same thing, I鈥檝e been pacing to keep going for another two hours.

听

ROBYN - Till six, yes.

听

EMMA - Oh, we always keep the studio for much longer than we need, with the recordings鈥�

听

ROBYN - Well, can we just keep going then till six, because we鈥檝e paced for six?

听

EMMA - Oh my goodness. Do you know what, I try so hard to get it right and it didn鈥檛 occur to me to explain, because almost anybody else I鈥檝e ever worked with, if I say you鈥檙e going to get off early says, woohoo and runs away, especially on a Friday evening.

听

JAMIE - It鈥檚 funny isn鈥檛 it, because we鈥檝e paced till six, which is fine, it just means that all the rest of it could have been better because we could have had more energy. Doh. But also I can see from here that you鈥檙e kind of frustrated. Welcome to our world. It really is bloody frustrating.

听

EMMA - I do have two more questions about meltdowns and shutdowns. Robyn, if yourself or Jamie had a meltdown here right now what鈥檚 the best thing that I could do?

听

JAMIE - Let me walk away.

听

ROBYN - Either let me leave the room or everybody else leave the room and turn the lights off.

听

JAMIE - Just give me half an hour.

听

ROBYN - Don鈥檛 try and keep talking to me.

听

EMMA - For a parent whose child has just had a meltdown what鈥檚 the best thing for the child to be doing afterwards.

听

JAMIE - Being supportive. So letting the child know that you still love them, that you don鈥檛 hate them, that if they鈥檝e acted out and they鈥檝e done something violent that you understand it wasn鈥檛 a choice and that you understand that they鈥檙e scared and that you still care about them. Because I was convinced, every time I had a meltdown as a kid I鈥檇 think this is the time I鈥檒l get put in foster care, this is the time I鈥檒l get shot or this is the time I鈥檒l get thrown in a river. You know, I used to be very scared that I was so badly behaved that I would end up, you know, being thrown away.

听

ROBYN - Well, you need to find out, if possible before they have a meltdown what helps them when they鈥檙e having a meltdown. Because some children might find deep pressure, like if you hug them really tightly that they might find that really helps. But like my parents, they learnt very early on that just made meltdowns for me worse, so like if I threw myself on the floor they should back away and just make sure I don鈥檛 hurt myself or anyone else, but just leave me to it because if they touch me that鈥檚 going to be overwhelming. I think it鈥檚 important to ask your child, or to use tools, like because some people obviously can鈥檛 explain, but to use some things like an ABC chart to look at what things help and what things don鈥檛 so that you鈥檙e clear and then you can make an action plan so when a meltdown happens you can use that action plan so your child is always getting the same response from you and it鈥檚 either the response that they have chosen or the response that you have worked out is the thing that makes them feel better.

听

JAMIE - I have a comment which might not be super popular with parents but it鈥檚 please remember that you鈥檙e the adult in the room and they鈥檙e a child. So certainly in my experience sometimes when I鈥檝e seen the most horrific outcomes from a meltdown it鈥檚 because the person who鈥檚 supposed to be being the adult lost their temper and started antagonising the autistic person. They started doing things intentionally to wind them up. That sort of illogical behaviour isn鈥檛 helpful.

听

EMMA - Parents are doing their best and sometimes they fall short.

听

JAMIE- Yes, exactly, but it鈥檚 important to understand that when it goes wrong and the parent is making it worse that is the parent鈥檚 responsibility, not the child. Way too often the child is made to feel guilty or frustrated or responsible for the actions of the grownups around them.

听

ROBYN - And sometimes the grownups feel like the child is trying to antagonise them, but well my experience from my life, obviously everyone鈥檚 different, is that really what you want is you just want the meltdown to stop. Yeah, I mean, now I know that if I was in that situation with my mum and dad and we were having鈥� Not that this really happens now that I鈥檓 an adult and I could go in my room and close the door, but rather than shouting and arguing the best thing for me to do would be to lay on the floor and bang my head because it doesn鈥檛 hurt anyone apart from me. Well, obviously it upsets my parents, but it鈥檚 better than me yelling or trying to have an argument, because I鈥檓 not really at the point where I can argue with anyone. I still need to feel like I鈥檓 getting rid of some of the energy.

听

EMMA - So both of you have said it鈥檚 better to hurt myself, and from my perspective that feels so wrong.

听

ROBYN - You shouldn鈥檛 encourage people to hurt themselves, definitely do not tell autistic people that they should hurt themselves. Me and Jamie were just talking about our own experience, and we鈥檙e not trying to advocate for people self-injuring.

听

JAMIE - The consequences of hurting other people and the consequences of breaking things are much higher than the consequences of hurting myself. If I hurt myself the only person who suffers is me.

听

ROBYN - Well, people around you feel upset.

听

JAMIE - Oh, you just hurt yourself in private when they can鈥檛 see.

听

EMMA - Oh鈥�

听

ROBYN - If you can get to a private place, but also that could be dangerous.

听

JAMIE - It is dangerous, you know. When I was stuck living on my own and I wasn鈥檛 coping and I was having daily meltdowns I鈥檇 get to sleep by banging my head on the end of my bed till I finally passed out.

听

ROBYN - I used to bang my head to sleep.

听

JAMIE - Yeah, I know.

听

ROBYN - I used to find it very comforting.

听

JAMIE - Weirdly yes, because I could finally make all the emotions stop if I just banged my head hard enough.

听

ROBYN - Yeah.

听

JAMIE - Sorry, Emma looks kind of horrified.

听

EMMA - Well, I鈥檓 not surprised. I鈥檓 horrified and I鈥檓 interested but I鈥檓 trying to figure out how I can put this in the podcast without getting everybody in lots and lots of trouble. My suggestion would be that it鈥檚 better to break someone else鈥檚 things than to hurt yourself.

听

ROBYN - No.

听

JAMIE - No, because that brings ramifications and discussion and more communication and it probably escalates the meltdown even more.

听

EMMA - So it鈥檚 about the quickest route from beginning to end of meltdown.

听

ROBYN - Yeah, and also鈥�

听

JAMIE - With the least follow up from other people. When I was homeless and I was living in supported living there was a lady underneath me who used to play music really, really loudly and the staff would go and say to her, 鈥淗ey, can you turn that down?鈥� and she鈥檇 turn it down a bit for about 10minutes and then once they鈥檇 gone she鈥檇 turn it back up again. And I was trapped in the room above her with nowhere else to go. Eventually when I had a meltdown I kicked my way out through a fire escape and smashed about three windows to go and steal the power cables from her speakers. Which wasn鈥檛 necessarily the most thought out plan but I got done for criminal damage for the things I broke along the way. Now these days I wouldn鈥檛 put myself in that position. Way before I got to that point I would be making the point to anybody who could listen, 鈥淗ey, I can鈥檛 live here with that noise.鈥�

听

ROBYN - Also, if you break something then potentially you鈥檙e going to then have almost like a double decker meltdown.

听

JAMIE - I鈥檓 so horrified by the thing that I鈥檝e done I am now melting down over the fact of the thing that I鈥檝e done during a meltdown is so horrifying to me.

听

EMMA - But biting yourself or banging your head doesn鈥檛 bring that horror?

听

ROBYN - No.

听

JAMIE - No, the pain can actually be useful because it makes my body feel like my body. It reminds me that I鈥檓 in control of my body. That old joke about kids being scared of going down the bathtub, I used to get exactly that. If I was having a meltdown and I was in a bath I would be terrified of going down the plughole, because I was no longer aware that I had a fixed shape.

听

EMMA - So if someone came to you and said that they were causing themselves self-injurious behaviour like biting or banging heads and they said it helped and they didn鈥檛 know another way, is there another way?

听

JAMIE - No, not that I know of. Avoiding them is the way, right?

听

EMMA - Avoiding a meltdown in the first place.

听

JAMIE - You stop it before life gets to that point by being in a position where you have enough autonomy, but if you are constantly put in the position where you don鈥檛 have the autonomy to stop it, I don鈥檛 know a solution. It鈥檚 the best of a bunch of bad options.

听

ROBYN - I mean sometimes you can do things like when I used to bang my head to sleep sometimes I sort of would like fold the pillow round on itself to make it a bit thicker, because I didn鈥檛 want to harm myself, I just needed the feedback. And also I know that it upset my parents, and so I wouldn鈥檛 want them to hear me bang my head if I could possibly help it because I didn鈥檛 want to upset them either, I just wanted to try and re-regulate. And so sometimes you can do things that give you the same feedback but maybe are less harmful to you. And there might be people out there who have found other ways of dealing with it, and you an email us at stim@bbc.co.uk, and tell us about it. We can only tell you about our experience and when we鈥檝e supported people and the research that is out there, but some of these things, there isn鈥檛 a perfect answer.

听

EMMA - What you鈥檝e said, it鈥檚 frightened me so it鈥檚 going to frighten parents isn鈥檛 it?

听

ROBYN - My mum used to take me to the doctors because she was worried about me banging my head, that I might get some like frontal lobe damage to my brain and yeah, I know that it really worried her. And I absolutely can understand that if a parent sees their child whacking their head really hard that they would be worried, because when you鈥檙e a parent obviously you want to do everything鈥�

听

JAMIE - Can I be hugely hypocritical?

听

ROBYN - Yeah.

听

JAMIE - If you see me banging my head let me do it, if you see anybody else banging their head stop them. [laughs]

听

EMMA - That鈥檚 what I鈥檓 talking about. That鈥檚 what I鈥檓 talking about. That鈥檚 what I鈥檓 trying to get at. I would really struggle to witness someone I love banging their head.

听

ROBYN - But it might be that you have one of those yoga mats, like the ones that are quite thick and鈥�

听

EMMA - But it鈥檚 about pain isn鈥檛 it? So banging off a yoga mat, it鈥檚 not going to do the same job is it? Oh my god, how am I talking about this?

听

JAMIE - It won鈥檛, it won鈥檛. It wouldn鈥檛 for me, although what it might do is it might reduce it enough that there鈥檚 time. Because one of the best things about shutdowns is buying time. If you can buy time for the emotions to pass everything gets easier.

听

ROBYN - Yeah, that鈥檚 true.

听

JAMIE - So a great example of buying time is I was taught to count from 100 back to one in my head and just focus on doing that, right? Now the reality is, when I鈥檓 in the middle of a shutdown I barely have the capability to do that, it comes really, really hard, but very occasionally that can be effective because I鈥檓 diverting and I鈥檓 buying my body time. Another thing that I quite often do is I have a space to go to. My bed is set up specifically so that at any point I can escape back to my bedroom, close the door, curl up in bed and I know I鈥檓 fine. I always have an audio book ready to go or a podcast or something. It鈥檚 always 鈥楢 Short History of Nearly Everything鈥� by Bill Bryson. And I know that I鈥檝e got hours of that if needed, that it鈥檒l keep going and I鈥檒l be able to keep listening and nobody鈥檚 going to interrupt me. Simply knowing that there is life after the meltdown, that what is going to happen can A, help reduce the meltdowns from happening, and B, again buy my body time when meltdowns happen.

听

ROBYN - My parents would often lift me up when I was banging my head on the floor and put me on my bed and close the door and then pump out Mozart really loudly. And that did seem to speed up the meltdown ending. I don鈥檛 know whether this works for everybody, but sometimes an extreme sensory experience like a really cold ice cream or maybe if I was having a meltdown now like if there was somebody there to help me maybe getting in the shower, but I probably wouldn鈥檛 be able to take my clothes off, I鈥檇 just have to get in the shower with my clothes on.

听

JAMIE - I鈥檝e been in many a shower wearing my clothes.

听

ROBYN - Yeah, I think that taking my clothes off for that would be too much gentle sensory input, but then the shower, like it would have to be on really hard and probably either really cold or really hot and lots of water, like not a trickle, it would have to be like a power shower and maybe I might stop.

听

JAMIE - It鈥檚 hard to explain. Imagine for a moment that your body had crashed like Windows does, right? And you鈥檙e seeing that little curser of doom that you get on Windows when it鈥檚鈥�

听

ROBYN - As in computer Windows.

听

JAMIE-

Yeah, your computer鈥檚 crashed and you鈥檝e got that little cursor of doom, well鈥�

听

EMMA - The circle of doom.

听

JAMIE - Yeah, on the computer you can like turn it off and on again, you鈥檙e almost looking for ways to turn your emotions on and off again.

听

ROBYN - Yeah, exactly, yeah. I also think I鈥檇 need to see Henry, like because Henry, he sits on the laundry basket when I鈥檓 having a bath.

听

EMMA - Your bat?

听

ROBYN - Yeah, my support bat. So that I know he鈥檚 there and I can see him all the time, but he鈥檚 at arm鈥檚 length. And the more comfortable I am in a place the further away Henry can be from me.

听

JAMIE - We use that as literally a metric with Lion about how comfortable I am with people. When I visit my friend鈥檚 house Lion can stay in my backpack downstairs while I鈥檓 upstairs. When I come to the recording studio he鈥檚 literally right next to me. This is the very first time we鈥檝e done a recording where he wasn鈥檛 on my lap, which means I鈥檓 slowly getting more comfortable here.

听

ROBYN - Well, today Henry鈥檚 in my hands, but that鈥檚 because I鈥檓 working really hard to not worry about the script and to not worry about time.

听

[Music]

听

ROBYN - Henry the support bat was in my hands throughout that episode because even though I wanted to talk about it some of what we discussed made me feel very anxious. Thanks to my friend, Louisa, for coming for pizza with me afterwards too. If you have something to share about meltdowns or shutdowns please email us at stim@bbc.co.uk. Stim is spelt S-T-I-M. We are continuing to record special short podcasts about autistic people and the Coronavirus, so please keep in touch about that too.

听

JAMIE- Remember to share 1800 Seconds on Autism with anyone you think might enjoy it. You can subscribe to us on 大象传媒 Sounds, and even go back and listen to other series if you like them. Meltdowns and shutdowns are horrible, so hopefully our thoughts on avoiding them and managing them will help somebody somewhere. Goodbye.

听