“We realized very early on that Tom is much more unpredictable than any rock star.” Kate Spicer is talking about her brother and focus of her feature documentary. Made alongside their brother Will, Mission To Lars is their story of trying to set up a meeting between Tom and his hero, Metallica drummer Lars Ulrich. Tom has Fragile X syndrome, a condition described by Kate in the trailer as “autism with bells on” which created massive challenges for all of them.

Before she found herself adding Filmmaker to her business card, Kate was a lifestyle journalist; far from the heavy metal junkie she had to become. In a surprisingly honest interview, Kate talked to me about those challenges in making the film, our culture’s attitude to people with learning disabilities, and her relationship with her brothers.

Geeks of Doom: Are you excited for people to see the film now it’s finished?

Kate Spicer: Excited isn’t the word because we’re doing so much of this on our own, which means there’s quite a lot to worry about. I enjoy a lot of it in hindsight, but I feel like if I stop to enjoy it, it will all go wrong!

Geeks of Doom: So in a couple of weeks if it all goes well you can say, “I enjoyed that!”

Kate Spicer: No, we’ve still got things like global distribution, getting it on telly and I learned early on every time I got over the last hurdle … it’s like oh shit … Tom, it’s wicked to see how he’s reacting and how he’s changed and he loves it, he absolutely loves it. It’s been a very, very good experience for him and that’s quite cool.

Geeks of Doom: Was there ever a time when you thought this is too much?

Kate Spicer: All the time! It would be much, much easier to name the times when it wasn’t like that to be honest with you. It was very tense … It was very difficult for Tom to overcome his disabilities and fears. My relationship with Will became pretty strained, to breaking point on a couple of occasions. It was a difficult process but there were moments of absolutely unequaled joy so that made it worth it. It was hard. It was hard to do, it was hard to see Tom really suffering and thinking we put him through this for nothing, you know? We were both basically punishing Tom for our own sense of purging of our guilt … [I had] a lot of weird shit going on in my head; I was quite paranoid a lot of the time! [laughs] There were some really wonderful moments, a bit like life I guess.

Geeks of Doom: What is Mission To Lars about for you?

Kate Spicer: It is a proper adventure, a proper journey but … for me a lot of the story is there’s another world inside music and music essentially is what makes this film happen, what makes Tom get to wherever it is he gets to…but it is about having a mission and what happens on this mission.

It’s about making Tom a man, not a label…you could label what he does with a lot of technical terms but you could do that with all of us. But Tom isn’t a bunch of fucking tags, he’s a human being. You could turn that kind of gaze on anyone on you or me…people have been coming up to me and saying, “My kids are at an age when they’re telling me that they’re frightened of learning disabled people” and that’s so, so, so sad.

Geeks of Doom: Absolutely right. Did you call on your journalist contacts to get to Lars?

Kate Spicer: Yeah, to an extent. There’s a little bit in the film where I’m talking to Kas [Mercer, Mercenary PR] and Kas just gave me numbers of useful people and maybe a few emails, but we went through all the correct channels. But there was also I would be drunk in a bar and I’d be talking to someone and going on and on about the film all the time and they would be like, “Oh I know Lars” or, “I know Lars’ wife” or something so I would be like, “Tell them! Tell them!” I don’t actually know what got through to him in the end. It could have been that woman I bumped into drunk in a bar in New York or it could have been the very steady process of respectful emails and phone calls up the chain of command. I had contacts but maybe that contact was someone I met in a bar pissed!

I was talking to this girl who makes jewelery and she’s like a socialite and quite well connected. When I told her about it she went, “Oh darling, I know Kirk…he comes and stays and we surf together.” I mean, god, that’s so weird! So Kirk surfs on the opposite side of the Devon coast to where Tom lives!

Geeks of Doom: That’s amazing! I read that with Tom’s Fragile X syndrome he hears sound ten times louder than you or I do…

Kate Spicer: [For people with autism] I think it’s fairly common. You’ll have to forgive me, my lack of knowledge about my brother’s condition is slightly embarrassing, but I think a lot of autistic type disorders how they sense and perceive things is very different. I mean for example kids with autism often hate supermarkets because there’s lots of lights and shiny floors and the way they arrange sensory information is very different. The way they order sensory information is very different so the noise is ten times louder. That’s probably why crowds are very disorienting because [there is] a lot of different sounds coming from a lot of different places and Tom often talks about liking to be somewhere quiet and if he enjoys something and if he enjoyed it because it was quiet actually that’s his way of saying it sounds nice. But with his listening to heavy metal on headphones, which is generally how he does it, then there’s just one channel of noise coming in. There’s not a load of people screaming all around, do you see what I mean? So people are like, “How could it be that he could like heavy metal and also have noise too loud?’ It’s more about how he orders the information in his brain.

Geeks of Doom: All that kind of made it more difficult for you in that you had to take him to gigs.

Kate Spicer: Well we didn’t have to take him to gigs; if you watch the film he refuses to go quite a lot. He won’t let us park in the car park of the first gig we go to so the whole process of the film is about a lot of different things, but one of the things it’s about is about me and Will learning enough about Tom’s condition and ergo Tom so that we can make things easier for him. So Tom overcoming some of those fears and explaining to us what will make it easier for him. The process is sort of a two-way understanding. Also there’s just this key moment where he starts wearing headphones and doing the sound with us and so he becomes more involved, feels more included. He feels less in the spotlight but also he’s always got headphones on so it improved some of the sort of harshness and disorder of atmospheric noise around him.

Geeks of Doom: Were you a fan of Metallica before this?

Kate Spicer: Well the idea to do this Metallica road trip as opposed to any other road trip came when we got Tom to a Metallica gig and it was very, very complicated…in 2008 or something and so I saw them then and once in the ’90s…it’s very rousing, exciting! I think I would have preferred them when they were like proper thrash to be honest with you.

Geeks of Doom: Back in the good old days!

Kate Spicer: Yeah, I like things fast! [laughs] I enjoyed them and I love the show…I was talking to some heavy metal nerds about now that I’ve seen Metallica seven times I find other shows a bit flabby and they’re like, “Well that’s funny because they’re one of the flabbiest bands out there!” I don’t know…maybe I’m just over-excited by the sight of fire!

Geeks of Doom: You said on Facebook that you noticed [Metallica lead singer] James Hetfield was not as friendly as Lars.

Kate Spicer: There’s no two ways about it: James Hetfield and the other guys were not into our project, no way. It’s funny, nobody’s really asked me about that.

Geeks of Doom: What happened?

Kate Spicer: They were quite…they weren’t into it at all, you could tell it was Lars’ thing. But I feel that’s kind of their thing, it’s quite common in that band isn’t it?

Geeks of Doom: What that Lars will talk to people and the others will just…

Kate Spicer: Well, they’ve just got their own things going on.

Geeks of Doom: I guess so. Also through this film you’re raising money for and you’ve been closely involved with Mencap – how did that come about?

Kate Spicer: Mencap is the biggest charity for learning disability [in the UK]. They are currently one of the most powerful lobbying voices the silent, very silent, learning disabled population have…I’ve been raising money for them since 2006…I needed their help basically. They quite often were there and very supportive so when we started raising I just felt like we had to make it a bigger thing than about us raising money for a film… we decided we’re never going to become millionaires with this film so once we’ve paid off all our debts and whatnot just give the profits to Mencap and I think Mencap love it, really love it and they don’t see it like a cashcow. I think they see it a really powerful awareness raising tool. [Puts on nasally voice] “awareness raising tool” that sounds really nerdy, like marketing speak! But, you know, you don’t see a lot of learning disability in the public eye and what you do is often a little bit worthy that makes you feel a little bit guilty. So hopefully this is not any of these things but it is a true portrait of someone with a learning disability.

Geeks of Doom: Through making this film what has it taught you about Will and Tom and your relationship with them?

Kate Spicer: It taught me that Will is no longer my baby brother and he probably looks down on me more than I look down on him. It taught me to see Tom much more as not my “learning disabled brother Tom.” I have always been close [with Tom] I’m not going to say I was completely rubbish, I’m not going to whip myself but I think we can be very, very lazy with learning disabled people…Tom and I have got a really good relationship now. It taught me to be a much better sister …you’ve got to be honest haven’t you…it would be horrible if we weren’t honest.

[As a journalist] I only wrote two first person pieces for press because otherwise it would become really tired and a bit sad, so I’ve just written two first person stories and I’ve got quite a lot of shame for the way I treated Tom and I think it needs to be talked about. I think people with learning disability in their family are often pictured as martyrs or abusers when actually it’s a very complicated interplay between a lot of different people. Really important to be honest about this stuff. Have you got any learning disability in your family?

Geeks of Doom: Not that I know of. I know a lot of people and kids of friends who have different forms of autism, so I’m aware of some of the issues you were talking about with Tom.

Kate Spicer: Autism is really fashionable at the moment and at the beginning of the film when I describe it [Tom’s condition] as “autism with bells on” partly I was saying that so people sit up and listen because it’s the only word around learning disability that people understand…I mean there’s as many different types of autism as there are people almost and Tom’s autism is actually quite a small part of what is wrong with Tom. But people seem to like the word! [laughs] Sometimes people have experience of learning difficulties and they react very differently to other people. There’s a woman at [British tabloid newspaper] The Sun who came to see it last week and she was just an emotional mess at the end, she couldn’t stop crying. You know, she was from The Sun a hard-arsed journalist who had a learning disabled daughter and I don’t know what touched her to be honest with you. I think we’re ignorant of a lot of the issues in the film, but that’s the only reason I ask; it means a lot of different things to lots of different people.

Geeks of Doom: I think if you were being “worthy” then maybe you would’ve made more of a point of Tom’s autism rather than saying it’s “autism with bells on.” You weren’t dismissing it but you weren’t saying, “Oh, poor Tom he’s got this…”

Kate Spicer: [laughs] Exactly! God, that’s so not what you want to do, is it. Yeah, you’ve got it spot on. You understand the film more than I do and you haven’t even seen it! [laughs]

Mission To Lars is currently touring the UK and parts of the U.S. Kate, Will, and (maybe) Tom will be doing a Q&A session at all screenings. Check out www.missiontolars.com and www.mencap.org.uk for more details.