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Meltdowns and shutdowns

‘They’re not tantrums’, ‘we can’t snap out of them’

This episode is about a difficult aspect of autistic life and includes discussion about the urge to give yourself physical pain to get some relief from extreme emotions. You may want to avoid this one if you feel fragile or if children are around.

Meltdowns are an outward explosion of emotions whereas shutdowns are when some autistic people internalise what’s happening and withdraw and go quiet as a result. Robyn holds onto her support bat Henry as she relives her most recent meltdown and describes the impact it had.

We phone autistic mum of autistic kids Shona Murphy who is an expert on "behaviour that challenges" - learning to punch a pillow rather than throw an iPad are the kind of tactics she advocates.

Another guest, Jonny Profane, had shutdowns for 60 years and didn't know why until he was diagnosed recently. He talks about the Embarrassment and shame he feels when they happen.

This podcast is longer than usual because the presenters weren't ready to leave when the producer said they could leave, so they kept talking. The final 15 minutes of this episode are even more raw and honest than usual.

With Robyn Steward, her support bat Henry, Jamie Knight and Lion.

Produced by Emma Tracey.

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Email stim@bbc.co.uk

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45 minutes

Transcript

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

 

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

 

ROBYN - It’s like being one of those little toys that come in a cereal packet and you’ve 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.

 

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

 

ROBYN - I’m just going to have a flap break. [flapping] That’s better.

 

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

 

ROBYN - And I’m Robyn Steward. In this edition we’re talking about meltdowns and shutdowns. It’s 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’s in his 60s and didn’t 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.

 

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.

 

ROBYN - In the studio with us is Jamie’s 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.

 

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

 

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

 

JAMIE - Oh!

 

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

 

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

 

ROBYN - I’ve got seven/eight spoons.

 

JAMIE- How many did you start with today?

 

ROBYN - About seven.

 

JAMIE - Oh, wow.

 

ROBYN - I had a nap.

 

JAMIE - Ah, naps are awesome.

 

ROBYN - Yes, I gained some spoons.

 

JAMIE - I think I’ve 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’ve eaten lots of chocolate since, so I should be high on sugar and Coke for the next like… I mean cola, not coke, coke. But I should be high… I didn’t do like two fat lines before starting. [laughter]

 

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

 

JAMIE - Not so much, although I’ve got a new jacket and the new jacket has a label that we cut, but the label’s 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’ve been electrocuted. And it comes at all the most inappropriate times so like everybody’s being really quiet because there’s a dramatic part on the TV and I go “Argh” in the corner. But apart from that it’s pretty good. Yourself?

 

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

 

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

 

ROBYN - So, I’ve built a DMX control with an arduino.

 

JAMIE - Ooh!

 

EMMA - What does that mean.

 

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

 

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

 

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

 

ROBYN - Yes.

 

JAMIE - What’s the problem you’re trying to solve?

 

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’s just a knob for controlling…

 

JAMIE - Dials, basically.

 

ROBYN - Dial. Yes, a dial.

 

JAMIE -  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’re in and then send that value.

 

ROBYN - Er, no. Not quite.

 

JAMIE - Oh, how do you do that then?

 

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

 

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

 

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

 

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

 

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

 

ROBYN - Yes.

 

JAMIE - Can I have a copy of your code?

 

ROBYN - Yeah, I’ll just copy and paste the code, because I don’t even need to explain to you what I did, you’ll be able to see.

 

JAMIE - Awesome!

 

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

 

JAMIE - Sorry, I just need to let my brain slow down from arduinos for a moment. In this episode we’ll 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?

 

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…

 

JAMIE - All very dramatic big things.

 

ROBYN - Yeah.

 

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

 

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

 

JAMIE - It’s the point where your body is just kind of reacting to something and you’re 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.

 

EMMA - Okay.

 

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’s really important that you make sure the person doesn’t 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.

 

JAMIE - It’s 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’s very, very, very scary, and that’s why shutdowns can sometimes cause panic attacks. I think we’ll talk about shutdowns more later. Let’s go back to meltdowns for a bit. Robyn, when was the last time you had a meltdown?

 

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’re not really being moved onto it, you’re having to apply for it because Disability Living Allowance stops existing. I’ve 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’ve heard so many horror stories about people’s experiences and I was worried that they might not understand that like there’s a lot of things I can do for myself but there’s a lot of things I really can’t do for myself reliably. I do get though fatigued, and it can happen quite quickly. The thing about fatigue is that it’s something that builds up over time so I was just worried that they wouldn’t understand and I had a meltdown. And that’s probably the first one in years.

 

JAMIE - And so let me guess a little bit. Is part of that because it’s a big unknown thing, you can’t avoid it. It’s going to demand energy…

 

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’t actually be true. But it just, you know…I was frightened.

 

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’m being forced to do something or there’s something I can’t escape. Because I know whether I’ve got energy for it or not and if I don’t have energy to handle a big demand I know that my body’s going to take days or even weeks to recover. So maybe it’d be a little bit like saying to a neurotypical person, “Oh, that’s fine, you can have your pay cheque but it’s currently on top of Ben Nevis. Once you go and get it from the top of Ben Nevis of course you can have it.” And you’re sat there going, “I can’t climb Ben Nevis today, but I need to buy food and pay the mortgage.” “Well your pay cheque is just there, go and get it. I don’t understand why it’s so hard.” Those sort of situations where neurotypical people are applying pressure and demands that they don’t understand we can’t meet, that’s like ideal meltdown territory for me.

 

EMMA - Are you okay to do this?

 

ROBYN - Yes, it’s fine, yes.

 

EMMA - Are you sure?

 

ROBYN - So long as you can’t decide that I can’t have Henry because he makes a sound.

 

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

 

ROBYN - Yes, I know.

 

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

 

ROBYN - But you might say, oh but you can’t keep moving Henry, but I need Henry and… because when you edit there might be a bit of bean rustling.

 

EMMA - It’s fine. I’ll probably leave it in because you’re using…

 

ROBYN - It’s kind of cute.

 

JAMIE - You’re you and it’s part of you.

 

EMMA - Yeah.

 

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

 

EMMA - Yeah. If you feel able, Robyn, let’s talk about the…

 

ROBYN - Yeah, I don’t mind. I’ve got Henry.

 

EMMA - Okay, you’ve got Henry.

 

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

 

ROBYN - It’s like being one of those little toys that come in a cereal packet and you’ve 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’re heavy then you sink. So it’s really overwhelming. And it’s 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’s no electricity the magnets just sit on the bottom, but then when there’s electricity if there’s a magnet at the top they all get drawn upwards? And well, it’s kind of like that. It’s as if the internal bits of my body are sort of… like my blood vessels are trying to jump out of me.

 

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

 

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’t 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’t see any way that it’s ever going to be over.

 

JAMIE - Meltdowns are surreal, partly because the frustration at the fact that a meltdown is happening can help fuel the meltdown. Because it’s not something I want either; meltdowns are horrible. So one of the things that I’ve 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’m starting a meltdown I’ll 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’s got to do and then kind of come back to it later.

 

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

 

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

 

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

 

ROBYN - Yeah, I need to tell somebody how frightened I am and I need to communicate. All they need to do is listen. She’s the only person that would listen to me and know that this is going to be over and it’s 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’re very rare now.

 

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’t know what the lesson was going to be that day. Or we turned up to one classroom and they weren’t 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’t stop my body’s reaction to. But often the root cause of the meltdown is lots of change. As I’ve got older and I’ve had more autonomy I’ve 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.

 

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

 

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

 

SHONA - Yes I’m here. Hi guys.

 

JAMIE - Hello.

 

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’s 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?

 

SHONA - So I think they’re different for everyone, but in my case if I’m 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’m not even stressed, but then I might do it really fast and much more of it when I’m starting to get stressed. I don’t think many people would notice, but people who know me well will recognise those signs. In fact I didn’t 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’m more able to look after myself if I can recognise when I’m 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’m 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’s being badly behaved.

 

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, “No, no, I’m really out of spoons and I need to stop now,” that they listen rather than go, “Oh, just a bit more. One more thing.”

 

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’s where I am from, it’s full of autistic families. And I think part of that is because schools are so inflexible, the staff don’t 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’s like a vicious circle of anxiety and stress. And because they’re so misunderstood you end up having to take your child out because people don’t give the right support or any support.

 

JAMIE - And you can’t just watch them continue to spiral and spiral and spiral when you know what the problem is.

 

SHONA - Yeah. And people always say, “Oh you’ve got to fight for support and you have to fight for this,” and you do, it’s 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’s called an EHCP, it’s like a statement.

 

ROBYN - Education Health Care Plan.

 

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’t, 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’s allowed to go outside and jump on the trampoline.

 

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.

 

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.

 

ROBYN - And also you’ve 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’s a way of regulating.

 

SHONA - Yes. I know about myself now, I’ve got a lot of self-awareness, but a lot of children will have no clue why they’re feeling stressed, they won’t know it’s because of the noise or the lights.

 

JAMIE - Or worse, they’ll 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!

 

SHONA - We’re all at a stage now that we have got the knowledge and the self-acceptance, but when you don’t have that knowledge and you just see everybody else seeming to cope fine and you don’t know why it’s really hard for your self-esteem. You think that it must be a problem with you.

 

ROBYN - Yeah, exactly.

 

SHONA - So it’s why it’s 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.

 

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

 

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’t think of it as bad behaviour, think of it much more like anxiety attacks, something that can’t be controlled. It’s not completely true that it can’t be controlled because you can teach meltdown behaviours in a way, so not smashing things up but instead I’ve tried to teach punching pillows for example. It took a long time but eventually we started having pillow punches rather than throwing iPads.

 

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

 

ROBYN - Thanks.

 

SHONA - You’re welcome.

 

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’m 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’m getting to the point where I’ll 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’m going to hit something make sure I’m hitting an object, and preferably a soft object, and then the third…

 

ROBYN - Not Lion though.

 

JAMIE - Not Lion. No, I’ve never hit Lion. That would be horrific for my mental health. So then the next thing is if I can’t 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’s better that I hurt myself than hurt something that somebody else values. To me it’s better that I have a few bite marks on the back of my thumb than I break a window.

 

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

 

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

 

ROBYN - I’m just going to have a flap break. [flapping] That’s better.

 

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

 

ROBYN - No. It’s quite funny.

 

JAMIE- I love the, “That’s better,” afterwards. It’s just so happy.

 

EMMA - Are you okay, Robyn?

 

ROBYN - Yeah, I just needed a flap break.

 

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

 

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

 

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

 

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

 

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.

 

ROBYN - Yeah, you said it’s your job, yeah.

 

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

 

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

 

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

 

ROBYN - Yeah.

 

[Jingle: You’re listening to 1800 Seconds on Autism]

 

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

 

JAMIE - Me too.

 

ROBYN - This time to Johnny… Profane?

 

JAMIE - That’s an amazing name.

 

JOHNNY - Yes, that’s a stage name, yes.

 

EMMA - Ah, a stage name.

 

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

 

JOHNNY - It’s five hours difference from you guys.

 

JAMIE - So we’ve mentioned it a few times, but for those who aren’t 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’s 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.

 

ROBYN - Do you have meltdowns or shutdowns, Johnny?

 

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

 

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?

 

JOHNNY - Oh yeah, well that’s 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’t remember the meltdowns that I have now. They’re 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’t 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.

 

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

 

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… You know, frustrated about scheduling or why can’t I get that toy, those kinds of things I remember. The difference between meltdown and shutdown? In a shutdown, I mean, it’s fairly obvious. I kind of lose my language ability. It’s 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’m depleted for a long period of time.

 

ROBYN - Did you say the embarrassment or the shame?

 

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

 

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

 

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

 

JAMIE - I tend to experience it like I’m 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’m doing, and it is terrifying.

 

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

 

ROBYN - I don’t think I’ve met an autistic person that doesn’t experience after meltdowns or shutdowns kind of embarrassment or shame, and because they’re something you can’t control, it’s like an epileptic seizure, like you wouldn’t want or expect somebody with epilepsy to feel embarrassed that they had an epileptic seizure because everybody knows that you can’t choose when you have an epileptic seizure, they’re just something that happens. And meltdowns and shutdowns are the same and nobody would choose to go through that because it’s really unpleasant, but sometimes it feels like society tells you that you should be able to control this and if you can’t you’re somehow deficient.

 

JAMIE - Exactly that. Or one of the ones that used to get into my head is I’d be told that I was being naughty or that I was, you know… “If you keep choosing to prolong this,” and I’m like no, I’m not…

 

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

 

JOHNNY -  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’s nearby me, any stranger, pretty much anybody, trying to make sure I haven’t harmed them in something I’ve 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’ve never believed was possible with, is tiring, largely because I’m hyper-vigilant the whole time I’m with her, thinking ahead what I’m going to say, reviewing what I have just said, watching her face to make sure I haven’t 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’m with you half an hour I’m going to go off and recover for half an hour.

 

ROBYN - My script says that you’re married to the love of your life but you don’t live with her. How does that work?

 

JOHNNY - Well, it works really great. [laughs] We met, believe it or not, over Facebook. We shared a number of interests, and it’s 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’t admire her or respect her, desire her, but because I couldn’t make it work. I couldn’t handle the pain, I couldn’t 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’s 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’m refreshed when I see her again and that makes it possible for us to have a marriage.

 

ROBYN - If I had a partner, which I hope I will one day, I’d like it if we didn’t live in the same house or the same flat.

 

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

 

EMMA - So it’s a thing then.

 

JOHNNY - And we spend most of our time together, that’s the thing. It’s not just a marriage on paper, it’s a real marriage, but the need for me to be in a space where I’m not hyper-vigilant, I’m 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’d say. And we’ve 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,  and in the US retirement is laughable, so we’ve had to use a lot of programmes to make it work for us here, but it is a solution where we’re 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.

 

ROBYN - Ah.

 

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

 

ROBYN - Thanks, Johnny.

 

JAMIE - It’s been brilliant to talk to you.

 

JOHNNY - Thanks guys, I really enjoyed it.

 

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

 

ROBYN - We’re about to talk about some really personal things that work for us and seem logical to us when we’re having a meltdown. We talk about hurting ourselves deliberately. Please remember when you’ve met one autistic person you’ve met one autistic person. Not everyone is like us and we’re 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.

 

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

 

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

 

EMMA -We were going to have to do lots of scripty things at the end of this, but I didn’t 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?

 

ROBYN - I wish you’d told me that before.

 

JAMIE - Have you been pacing for like…? I’ve been doing the same thing, I’ve been pacing to keep going for another two hours.

 

ROBYN - Till six, yes.

 

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

 

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

 

EMMA - Oh my goodness. Do you know what, I try so hard to get it right and it didn’t occur to me to explain, because almost anybody else I’ve ever worked with, if I say you’re going to get off early says, woohoo and runs away, especially on a Friday evening.

 

JAMIE - It’s funny isn’t it, because we’ve 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’re kind of frustrated. Welcome to our world. It really is bloody frustrating.

 

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

 

JAMIE - Let me walk away.

 

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

 

JAMIE - Just give me half an hour.

 

ROBYN - Don’t try and keep talking to me.

 

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

 

JAMIE - Being supportive. So letting the child know that you still love them, that you don’t hate them, that if they’ve acted out and they’ve done something violent that you understand it wasn’t a choice and that you understand that they’re scared and that you still care about them. Because I was convinced, every time I had a meltdown as a kid I’d think this is the time I’ll get put in foster care, this is the time I’ll get shot or this is the time I’ll 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.

 

ROBYN - Well, you need to find out, if possible before they have a meltdown what helps them when they’re 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’t hurt myself or anyone else, but just leave me to it because if they touch me that’s going to be overwhelming. I think it’s important to ask your child, or to use tools, like because some people obviously can’t explain, but to use some things like an ABC chart to look at what things help and what things don’t so that you’re 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’s either the response that they have chosen or the response that you have worked out is the thing that makes them feel better.

 

JAMIE - I have a comment which might not be super popular with parents but it’s please remember that you’re the adult in the room and they’re a child. So certainly in my experience sometimes when I’ve seen the most horrific outcomes from a meltdown it’s because the person who’s 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’t helpful.

 

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

 

JAMIE- Yes, exactly, but it’s important to understand that when it goes wrong and the parent is making it worse that is the parent’s 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.

 

ROBYN - And sometimes the grownups feel like the child is trying to antagonise them, but well my experience from my life, obviously everyone’s 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… Not that this really happens now that I’m 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’t hurt anyone apart from me. Well, obviously it upsets my parents, but it’s better than me yelling or trying to have an argument, because I’m not really at the point where I can argue with anyone. I still need to feel like I’m getting rid of some of the energy.

 

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

 

ROBYN - You shouldn’t 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’re not trying to advocate for people self-injuring.

 

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.

 

ROBYN - Well, people around you feel upset.

 

JAMIE - Oh, you just hurt yourself in private when they can’t see.

 

EMMA - Oh…

 

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

 

JAMIE - It is dangerous, you know. When I was stuck living on my own and I wasn’t coping and I was having daily meltdowns I’d get to sleep by banging my head on the end of my bed till I finally passed out.

 

ROBYN - I used to bang my head to sleep.

 

JAMIE - Yeah, I know.

 

ROBYN - I used to find it very comforting.

 

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

 

ROBYN - Yeah.

 

JAMIE - Sorry, Emma looks kind of horrified.

 

EMMA - Well, I’m not surprised. I’m horrified and I’m interested but I’m 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’s better to break someone else’s things than to hurt yourself.

 

ROBYN - No.

 

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

 

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

 

ROBYN - Yeah, and also…

 

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, “Hey, can you turn that down?” and she’d turn it down a bit for about 10minutes and then once they’d gone she’d 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’t 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’t put myself in that position. Way before I got to that point I would be making the point to anybody who could listen, “Hey, I can’t live here with that noise.”

 

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

 

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

 

EMMA - But biting yourself or banging your head doesn’t bring that horror?

 

ROBYN - No.

 

JAMIE - No, the pain can actually be useful because it makes my body feel like my body. It reminds me that I’m 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.

 

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’t know another way, is there another way?

 

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

 

EMMA - Avoiding a meltdown in the first place.

 

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’t have the autonomy to stop it, I don’t know a solution. It’s the best of a bunch of bad options.

 

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’t want to harm myself, I just needed the feedback. And also I know that it upset my parents, and so I wouldn’t want them to hear me bang my head if I could possibly help it because I didn’t 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’ve supported people and the research that is out there, but some of these things, there isn’t a perfect answer.

 

EMMA - What you’ve said, it’s frightened me so it’s going to frighten parents isn’t it?

 

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’re a parent obviously you want to do everything…

 

JAMIE - Can I be hugely hypocritical?

 

ROBYN - Yeah.

 

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

 

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

 

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

 

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

 

JAMIE - It won’t, it won’t. It wouldn’t for me, although what it might do is it might reduce it enough that there’s 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.

 

ROBYN - Yeah, that’s true.

 

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’m 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’m diverting and I’m 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’m fine. I always have an audio book ready to go or a podcast or something. It’s always ‘A Short History of Nearly Everything’ by Bill Bryson. And I know that I’ve got hours of that if needed, that it’ll keep going and I’ll be able to keep listening and nobody’s 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.

 

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’t 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’t be able to take my clothes off, I’d just have to get in the shower with my clothes on.

 

JAMIE - I’ve been in many a shower wearing my clothes.

 

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.

 

JAMIE - It’s hard to explain. Imagine for a moment that your body had crashed like Windows does, right? And you’re seeing that little curser of doom that you get on Windows when it’s…

 

ROBYN - As in computer Windows.

 

JAMIE-

Yeah, your computer’s crashed and you’ve got that little cursor of doom, well…

 

EMMA - The circle of doom.

 

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

 

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

 

EMMA - Your bat?

 

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

 

JAMIE - We use that as literally a metric with Lion about how comfortable I am with people. When I visit my friend’s house Lion can stay in my backpack downstairs while I’m upstairs. When I come to the recording studio he’s literally right next to me. This is the very first time we’ve done a recording where he wasn’t on my lap, which means I’m slowly getting more comfortable here.

 

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

 

[Music]

 

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.

 

JAMIE- Remember to share 1800 Seconds on Autism with anyone you think might enjoy it. You can subscribe to us on BBC 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.

 

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