For the one and only time this season, we had two guests on the podcast. Richard Mylan is a nationally recognised TV and stage actor, and David Mercatali is an award-winning theatre director. But other than the fact they’re both artists, what they have in common is that they’re Autism Parents. I’ll be honest, I had no idea how this conversation would go. I just knew it was a subject we needed to tackle, and I was proven right. Listening to David and Richard talk about their experiences was really moving for me. I came away knowing so much more about Autism and the everyday lives of neurodiverse people and their loved ones. The actual recording was over an hour long and, annoyingly, there’s so much stuff I had to edit out for the sake of time. However, this is still a fascinating read, and I’m honoured to be able to share it with you.

If you’d like to listen to the episode, click here.

Welcome to Episode Five of Critically Speaking.

Richard Mylan: Take the first film that we did with my son Jaco, for example. All we wanted to do was have a truthful representation of our experience, because everything that I saw up until that point was very dark. And very negative.

Jafar Iqbal: You’re nodding, David.

David Mercatali: Yeah.

Mylan: But a lot of the rhetoric and a lot of the media around Autism isn’t positive and my experience of Autism, although it’s extremely challenging at times, it’s on the whole a really positive, happy one. So I just wanted to represent that.

JI: David, you…how long have you been in Wales now?

Mercatali: I arrived at the end of 2017.

JI: How different is it from England, the rest of the UK?

Mercatali: So my son Daniel, the very, very first time Autism got suggested to us, it got suggested in the worst way. So we went through a journey of denial for a while. They handled it quite badly in the end. One day, Tess [David’s partner] went into school and they just handed a sheet to her without even saying anything, that said ‘Autism Observation’. And Tess was furious, I’m sure you can imagine. If I was there…oh my word, I think the whole situation would have got nasty at that point, because you don’t handle things that way. And we sort of fought back against that for a while, because you do have a certain denial because you think, ‘you don’t understand my child and you’ve not talked to us about this properly’.

Shane Nickels (producer): And I suppose you don’t really know much about the condition at that point.

Mercatali: Well, you don’t, and you only know what people tell you, what you’ve seen, perception-wise and things like that. And so you believe all sorts of ridiculous stereotypes, like Autistic people don’t have empathy or Autistic people don’t understand or relate to the world around you. And I’m thinking, ‘but my son Daniel loves me, and he’s caring, so how can you look at it that way?’ So we struggled with it at first.

Mylan: How old’s Daniel now?

Mercatali: So Daniel is now five, and they were first bringing this up when he was three.

Mylan: So with Jaco, I think he was about eighteen months. And it was quite a real defining moment…

JI: That’s quite young!

Mylan: Yeah, because…it had something to do with the fact that I was filming away at the time. I was doing a show called Where The Heart Is, so that was long periods at a time away. I remember coming home, and the first thing I wanted to do after hugging him and seeing him – this adorable, beautiful child – I was just so happy to see him. So I got my camera out and I wanted to take a picture. And as I went to take the photo, he put his fingers in his ears.

JI: At eighteen months?

Mylan: At eighteen months, yeah. And I took three photos and each photo that I took, the flash would go and he’d put his fingers in his ears. The flash would go and then he’d bring his hands down. I’d bring the camera up again, he’d do that. And I was like, ‘but there’s no noise here, so what’s going on?’ If it was a noise thing, why is he sensitive to that? So I was like, ‘well, there’s something wrong with his ears, I’m going to take him to an ear specialist’. The ear specialist took one look at him and she said, ‘I think I need to refer you’. And then, I had that thing where she handed me a load of leaflets. And I was like, ‘right, okay…’

JI: Same reaction?

Mylan: Well, the denial, the major denial had already happened previous to that. And then that realisation is led swiftly by a grieving process. It’s the only way I can describe it. You go through a grieving process because you’re grieving…parenthood is imprinted on us, right? We have this natural preconception of what it is supposed to be like. And when that is ripped away from you, you go through a grieving process, because you’re grieving all the things that you thought you were gonna do.

Mercatali: 100%.

Mylan: And you know, ‘I’m gonna do this with my son, I’m gonna do that’, especially dads, right? So you go through this period and, for me, it lasted a long time. Longer than I cared to admit at the time. You know, there was a period where you could really tell I was struggling but then, after that, there was a period where I was still struggling but putting on a brave face. It’s a long old process, and I think every parent goes through it on some level. 

Mercatali: And there’s a difference between still grieving at one level, but also needing help. You then realise the difference, there’s a massive, massive difference between people who campaign from a position of privilege and people who campaign because they have to and campaign because that is their role. For Richard and me, we have to because we have to fight for our children. Nobody else is going to do it for you. And nobody else is going to take charge of your child that is Autistic and go, ‘we’re now steering this ship’. No, you’ve always got to steer the ship. You’ve always got to look after your child’s rights. And on that basis, you have no choice.

Mylan: You’re left negotiating a thick wood without a map and a compass, that’s one way of…

JI: I like that.

Mylan: But then it gets to a point where your child starts to show you in all these different ways, ‘hold on, I’m going to show you how my world is, or I’m going to give you little insights into how my world is’. And then you slowly realise that, actually, you’re not going to lead your child through this, they’re gonna lead you through this. And that is a really, really freeing, beautiful moment, when you come to realise that. I remember when I just thought, ‘I’ve got to let go of all of these things, what I wanted for my child, I’ve gotta let go of all that, I’ve just gotta start again and reset my brain’. And it was such a freeing time, I felt all this weight lifting off me, and I started to see my child for what it was. And the joy and the life inside of him, y’know? And it was a beautiful, beautiful moment. You’re still kind of negotiating that forest but you’re doing it with joy…

JI: You have a compass now.

Mylan: Exactly, exactly. 

Mercatali: And I’d say, I’m very grateful for the Welsh community for just how much it cares about access, actually, which is just… (David sighs) I can’t tell you what that does as a parent. Accessibility in theatre has become a real point of interest across Wales at a quicker rate, much quicker rate than I felt it was in London. When I left London in 2017, not every show I was going to see had a BSL performance, for example. Whereas it’s almost impossible to…even a show that has three or four nights here in Wales, almost one will have that. Relaxed performances matter. I mean, I think you and Shane are very much leading on these sorts of things, I’m aware of how much you care about this sort of stuff, and it is spread out across the community and it does make a difference to us. For example, first time Daniel went to the theatre was to see Little Red Riding Hood at the Sherman [Theatre]. I mentioned to Gethin [Evans, Artistic Director of Fran Wen] the director that Daniel was going to go, and that he was Autistic. So be prepared that he probably won’t be able to sit through all of the performance, because he can’t sit there for an hour. And I knew the Sherman knew this, and I knew that Gethin knew this, and I knew his performers knew this, I knew everyone did, and I knew that it would not in any way be a problem. That would in no way be a problem. So for me, when you talk about your art, the first thing I’m actually thinking about is how that art is accessed even before I’m thinking about the content of what I’m doing. I’m thinking about how that art can be seen. It’s about realising that, actually, not everyone can process it the way neurotypical people can. And so I feel, actually, the theatre community is my ally on that. Because if I’m to turn around and go, ‘my son Daniel has Autism and I want him to see this show’, I don’t get the feeling that the first response I’m going to have is ‘that’s very inconvenient’ or ‘that is a problem’. There is an understanding that theatre needs to come to everyone, and that’s a big passion point. The word I would have a real issue with is the word ‘etiquette’. Etiquette is a really problematic word that I’d love to put in the bin.

(Richard laughs)

JI: Do you mean, etiquette like…

Mylan: Theatre etiquette!

Mercatali: Theatre etiquette, but also etiquette in terms of the way we look generally. Obviously, I’m a director, Richard’s an actor, theatre is a difficult space for disruption, course it is. For live performance an actor…it’s not just on a screen, of course it’s difficult, no-one’s denying that. But the moment you start talking about etiquette is the moment you start talking about exclusion, and it’s the moment you start saying, ‘this is the way people should behave in the world’. And the problem is that no-one with Autism is ever going to behave the way people think they should behave. If that is what is imposed upon him and imposed upon us and imposed upon society, then I guarantee you you’re excluding him from having that experience. 

JI: Did you have a different opinion of etiquette before you became Autism campaigners?

Richard and David: Yeah…! (everyone laughs)

Mylan: I’ll give you an example. We went to see Harry Potter And The Cursed Child, relaxed performance, yeah? That was a rare occasion because, obviously, those tickets are very hot. But they did do it and it was great. It was full of neurodiverse people – not just Autistic people, a myriad of conditions. It was bedlam in there, in the most glorious way. And I just remember being sat there in the middle of it all and really enjoying that whole experience so much more because of that. Because it wasn’t as if nobody was engaged and it was bedlam, it was bedlam because they were so engaged. And I just thought, ‘this is bloody wonderful’. And then I thought, ‘I wonder how the actors are dealing with this’. And then I remembered, I did a show called Things I Know To Be True with Frantic Assembly, and it was a main house tour, right? But Frantic Assembly’s audience are predominantly young, and they don’t have this theatre etiquette, they don’t get this theatre etiquette thing. And they’re very vocal about how they enjoy a performance, annd they don’t care if they’re sat there with their feet up… (Richard accidentally hits the table, causing a loud thud) …sorry…

JI: It’s alright!

Mylan: (puts on a posh accent) Sorry, sorry!

Mercatali: (laughing) Etiquette, etiqutte!

Mylan: I was more worried about the sound…! But they don’t care that their feet are up here, or they’re making loads of loud noise with crisps and sweets, or being vocal about what they’re seeing in front of them like, ‘don’t do it!’ Or, ‘no way!’

JI: That was happening?

Mylan: Yeah. And there were these older actors there, and they’re like… (puts on old, posh voice) I can’t bear it, I can’t bear this noise, they don’t have any theatre etiquette, I can’t bear it, why don’t they just be quiet and listen to the performance!’ And I was like, ‘you’re seeing it all wrong, they are loving your performance!’ That’s the whole point, they don’t know about etiquette and nor should they. Etiquette is like any kind of social rule, it’s a load of bollocks.

JI: So you’ve always felt it was bollocks?

Mylan: I’ve always felt that way about it. I’ve always loved it when audiences are very vocal and noisy and sweets and all that, I just love that buzz, that energy. Because guaranteed, when a  moment drops or you say a line, you’re gonna get the same reaction, probably moreso. They are still one hundred percent with the play. I think a lot of older actors and a lot of older theatre-makers, they get wrapped up in this notion of, y’know, you have to go to the theatre and sit there and be quiet and bloody enjoy it.

Shane: It’s a very white issue.

Mylan: It is!

Mercatali: Hugely.

Shane: And classist as well.

Mercatali: Hugely.

Mylan: Aw, yeah!

Mercatali: It’s a racist and a classist issue, ultimately. Because, as I said earlier, it’s about exclusion. It’s about, ‘this is a club, this is who can enjoy it, and this is how you’re supposed to enjoy it’. So for me, I’m a very anxious theatre-maker, I’m a very anxious person. What Daniel does for me is he’s relaxed me so much more as a person, than I was before. He’s so good for me, he is so good for me. I was describing this to Tess the other day. I grew up in single-parent household, just me and my mum. It was a very fraught household, can’t deny it. My mum had bipolar so it was very difficult, and I’m not used to being in environments that feel relaxed and in the moment. I’m just not used to it. My brain is already worrying about the next thing. And Daniel is  the first person that has come into my life who can make me be in the moment. That’s a gift. That is a gift. And I couldn’t, wouldn’t, change that for anything. So when you talked about the positive, people don’t know what that can be, what that is. I can’t be in the moment, you know? I can’t be in the moment in the same way without feeling how he leads me that way.

JI: Have you changed as artists?

Mylan: Yeah.

JI: In what way?

Mylan: I’ve learnt an incredible amount of patience and resolve. And also, an actor is really bloody self-centred and the world revolves around them, right? And even though I still am a little bit like that… (everyone laughs) …before Jaco came along, I was really, really, really bad that way. I was very typical in that way, a very typical actor. So the patience that I learnt and the resolve, and seeing the world differently has had a massive effect on me, creatively speaking. That part in Killology, Paul, Autism definitely influenced that role for me. In my prep for it before the audition, because I recognised Autism in the language. I recognised Autistic traits in the language. I would never have recognised that layer had I not had an experience with Autism. 

Mercatali: I think theatre is more like music than we realise, actually. When we’re communicating something to someone, like when you’re listening to a really great album or something, it’s all about the story of that music and how it goes. And when actors are acting off each other, you’re trying to create that, you’re trying to create that tempo. My tempo was always…I always wanted to do it in a way that felt jacked up, so to speak, in a way that felt like it was always going to be stimulating every single moment. But I know that Daniel’s mindset would be blown on that after about five minutes, because he would want to look at things, he wants to go fast at times and slow at times. I think about that now.

JI: It’s funny you say that because I read a review of Tonight With Donny Stixx, which was 2016, so before the diagnosis. And it mentions that it’s really frenetic and it’s really sequenced. And then you look at something like Tremor which you did, which was so…gradual.

Mercatali: Yeah.

JI: So yeah, it does definitely reflect.

Mylan: That’s interesting.

Mercatali: Yeah, and I mean, you don’t know what it is at the time. You think, ‘am I maturing as an artist, am I  looking at the world in a different way, am I just not looking at things on one level?’ But no, think about people you’re with, the people that influence you, the people you care about. We’re like sponges, we take things in all the time. 

JI: You’ve both been quite positive about the Welsh community and how it’s dealt with parents with Autism. What’s the next step?

Mercatali: Adults with Autism, I would say. Autistic adults. I worry about the prejudices in society on that, I’m worried for Daniel. I’m worried for Daniel for when he’s not living with me and Tess.

Mylan: I absolutely agree with that. Let’s take Jaco, for instance. He films everything, that’s so sweet, he films everything, so lovely, isn’t it amazing? Cut to five, six years, seven years down the line, when he’s a big old man and he’s walking around and he’s filming everything. That stops being cute. That starts to be a real concern for the public. That could mean the police are called, right? And Jaco’s not giving eye contact and behaving in a way which the police immediately deem as threatening when he’s not. He’s stemming and he’s not giving eye contact. He looks like he’s tweaking on crack or whatever, he’s tasered, dragged off, stuck in a…like, all these things are genuine worries for me. And the reason why I’m saying that is because I’ve seen that, I see videos of Autistic kids being tasered because of a lack of understanding. So there’s so much we need to do.

Mercatali: It’s really serious. What you’re talking about there is really serious. And I think it needs to become society’s responsibility. It’s really, really worrying, and we’re still really awful at it. People I like and people who are close to me who I have to call up on this. They’ll just go, ‘aw, I was just talking to a really weird guy over there’. I was thinking, ‘what are you actually getting at by saying weird person?’ You’re basically saying someone who is not neurotypical as you see it. And now, therefore, you’re all setting them up as a weirdo. We’ve gotta get a lot better at it. We have to get a lot better at it.

Mylan: It should be law that every public space has Autism sensory-friendly things in place. They’re not huge changes but, because it’s not law, nobody’s doing it. The theatres are leading because the theatres are much better at being inclusive, they always have been. They’ve always been at the front of that conversation.

Mercatali: Absolutely. Obviously I was in an organisation in the Sherman, which is in Wales, and I know they care consistently about access.

JI: Is that Sherman 5?

Mercatali: Yeah, well, Sherman 5.

Mylan: Sherman 5 is amazing.

Mercatali: Sherman 5 is phenomenal. What a difference-maker.

JI: Do you think Sherman are the best at it in Wales? Who would you say is like, ‘wow, these guys are doing it properly’?

Mercatali: I would say Sherman, Sherman 5, yes. 100%. Because it’s at the forefront of all the thinking and, also, everyone in the Welsh community knows what Sherman 5 is. (to Richard) Would you say anyone else?

Mylan: Well, I was just thinking about it then. The general standard is quite high in Wales, right across the board. But yeah, like, Sherman 5…it really reflects, I feel like it truly reflects our society.

Mercatali: Yes.

Mylan: And that’s what I love about it. 

JI: I’m gonna be cheeky here. Anyone you think doesn’t do well?

Mylan: Generally, I’ve found that the more popular a place is, the less they care about sensory awareness. 

Shane: I do have one more question.

JI: Go on, yeah!

Shane: One final question. When we’re looking to the future of representation on stage, where do you stand on neurotypical roles and neurotypical actors?

Mylan: That’s a great question.

Mercatali: Great question!

JI: That’s why he’s the producer…!

Mylan: And it’s one that I think about a lot, actually. Just take All In A Row as an example, the play All In A Row, where they used a puppet to play a non-verbal Autistic child. Now, it reignited an old argument which is that only neurodiverse people should play neurodiverse roles. And I get it, because they’re underrepresented in that way. The same way you would now only ever want a disabled actor to play a disabled role, right? The problem with it is, for me personally, is that Autism is a hidden disability so it’s not something that is physically manifested, right? And also, neurodiverse Autistic people, they learn to exist in a neurotypical world. And they learn to mask. They learn very well to mask, right? So they can play a neurotypical. What the Autism is saying is, ‘only Autistic people should play the Autistic roles’, then what they’re actually saying is, they’re shooting themselves in the foot. Because then only Autistic actors can play Autistic roles, they can’t play neurotypical roles. I don’t know what the answer is to this, it’s a real tricky one. But personally, I feel that we should be a lot more relaxed about it, because we’re telling stories. And I get it, Autistic actors are underrepresented, I get that. But I think the Autistic community are shooting themselves in the foot by closing it off like that. 

JI: Is that a popular opinion?

Mylan: No.

JI: Okay. 

Mylan: I’m in the minority in that.

JI: What’s your opinion,. David?

Mercatali: I would say it’s complicated. This is the thing about when you’re thrown in to something that you’re still feeling your way through politically. So in All In A Row, for example, people would ask my opinion. And my thing was like, ‘sorry, I don’t really have an opinion yet, I’m just worried about, y’know, how he’s getting on at school!’ Y’know? ‘It’s all very well and good but, right now, it’s fine, I’m worried about getting him some clothes!’ (Jafar laughs) I’m doing that right now. 

Shane: Are there people choosing to fight that battle the way you’re talking about?

Mercatali: I would say…there are people choosing to fight that battle and I respect opinions on all sides, and I think that’s kind of where we should be politically. When RIchard says his opinion isn’t popular, but it’s also a legitimate opinion, because you’re an Autism campaigner who’s working in the arts. So even if my opinion ends up being slightly different, there shouldn’t be any sides on this. There should basically just be a really, really, detailed conversation. I would say that it is underrepresented, but I think that unfortunately comes from the fact that it goes to the back of the queue when it comes to representation. Now access is getting better, much better, we’re leading on access. But the actual content on stage, I’m not seeing a whole lot of interest in people wanting to represent Autism, really. We have, obviously, the very famous ones. Curious Incident [Of The Dog in the Night-Time], Spoonface Steinberg, etc, etc. The slight problem I have – I don’t have a problem with those plays, they’re great plays, Curious Incident is a great show. But they always have to do it in a way where that person is a hero. That person is someone who comes forward and has this very heroic role from a position of disadvantage and ‘isn’t this very surprising and unexpected?’. I would like to see Autistic people represented as people who just happen to be Autistic rather than, it doesn’t always have to be bright lights. This is the journey we’re on, right?

Mylan: But at least the line is moving, right? Because even like, ten years ago or whatever, the line was just…pfft! Yeah, progress is being made,  but you’re absolutely right. There’s a queue, there’s a bloody queue!

Mercatali: There’s some interest in it. But what I would say is, any representation on stage is good. Yes, we need to see more Autistic performers. We do. We need to see more Autistic performers in Autistic roles, we need to see more Autistic performers in non-Autistic roles. And I’d be happy to see a non-Autistic person playing a role if I felt they were doing it with empathy, with understanding, because isn’t that what we’re all trying to do? Increase our empathy? I would say I don’t feel that I’m part of Team…anything on that kind of score, but who knows where you’re gonna be in two, three years time. What happens, y’know, bad things happen, good things happen, that alter that view.

Shane: I’m just thinking about Arts Council Wales’ Lottery Review, which they’ve just published, what they feel is the future of that Lottery funding is. In that whole document, I don’t think the neurodiverse conversation comes up once. And the whole document is about special characteristics, it’s about what is the future of Lottery funding. And I don’t think it’s anywhere in that document.

Mercatali: I’m not surprised.

JI: The interesting thing, in my opinion, and I might have this wrong, but when I think of access, I don’t think of Autism. And I think that’s the problem, is that people don’t link the two together in that way.

Mercatali: They don’t.

Mylan: It’s very low in public consciousness, right? And they don’t even realise it’s an issue. That’s why I felt it was really important to make the film that we just made, because it really addresses that issue and it really, hopefully, puts it front and centre into people’s minds. And then the process then is, kind of, a natural progression. That doesn’t surprise me.

Mercatali: That’s not surprising at all, is it?

Mylan: No.

Shane: And I only realised because of this conversation. When I went through that document with producers going, ‘what do we think about this?’, that wasn’t anywhere in my mind.

Mercatali: It’s not a surprise, because I don’t imagine they see it as a priority right now. If you think about how long all of these campaigns take, this campaign is still relatively new. What we’ve got to think about, then, is that next time there’s that review, it’s gotta get on it. We all know that when it comes to representation that we’ve gotta shout, it’s as simple as that. But what you’ve mentioned there about not being in the document – doesn’t that, in a way, validate every single other one that is mentioned in the document? Of showing that, actually, people have got behind campaigns. People have made movements, but those things have gone on for decades, and thank goodness they have! We’re early doors, we’ll get there.

Mylan: And also, it all comes down to stats, right? So one in a hundred…this is the official UK stat, one  in a hundred people in the UK has Autism. In America, it’s one in fifty-nine. And President Trump calling it ‘an epidemic’, which is bollocks.

Mercatali: Yeah.

Mylan: Because, actually, they’re just better at diagnosing. And the point is, if it’s one in a hundred here, there’s less of an appetite. It’s one in fifty-nine in America, they’re doing more. We will catch up to that and soon it’ll be more like one in ten or one in twenty. And then it’ll be like, ‘right, they’re a legitimate, massive part of society, we have to do more’. And it has to be law.

Mercatali: We are going in the right direction. And I would say, the fact that you thought this was an important thing for this podcast, an important part of it, shows that we are making somewhat of a dent, somewhat of an impact in the public consciousness.

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