Our guest this week is a true pioneer in our field. So Claire Madge is a central figure in the promotion of accessible museums across the UK. She is the founder of Autism in Museums and initiative working to create autism friendly change across the cultural sector. She is a tireless frontier, her work stems from her personal connections to autism. For her efforts, Claire has earned the Museum and Heritage Volunteer of the Year award. This reflects her work with some really big museum places, like the V&A and the British Museum, as well as smaller institutions like the Jewish Museum. As part of her work with Autism in Museums, Claire has traveled the length and breadth of the country, sharing best practice at events and conferences. It's always really inspiring to hear Claire speak. Today she is going to share her personal and professional stories with us.

Yeah. So Autism Spectrum condition is a, as it says in the diagnosis, is a spectrum, so it affects people very, very differently. So you can have someone with autism who is nonverbal, who may have learning difficulties or need support for their whole life. But equally, you can have someone who is autistic, who has something called Asperger's, where they don't have any learning difficulties, but they might have problems with social communication, and social interaction. So it doesn't lessen the difficulties that they face. There's certainly a lot more awareness around Autism in the media now and you'll see it portrayed on television, I think there's even a storyline running in EastEnders at the moment about their autistic son. But I think some of the challenges with autism is that it's such a wide spectrum, and every autistic person is different. So how you support that in a museum context can be seen to be quite challenging, when in fact, there's some, you know, simple things to make a difference. What autism isn't, it isn't a disease, it isn't something you catch, it isn't something you grow out of, and it isn't a mental health condition. Quite often, if you are autistic, you might have co-occurring conditions. So you might have ADHD, you might suffer from depression. But just because you are autistic, it doesn't mean to say that you're going to have those conditions come through in your life. But yeah, not the best description, but a quick description.

Roughly how many people have an autism spectrum diagnosis in terms of percentage of the population?

The National Autistic Society I think put it in one in 100. But I would say that's probably conservative, I think there's a lot of adults who don't have a diagnosis. I think the way it impacts families as well, it's not just the individual, it's everyone involved, that it impacts. So I think they put it, if you include families, they put it at 2.8 million, but I would say that's very, fairly conservative. But a lot of people say, oh, I'm a little bit autistic, you know, because they like things a certain way, or they struggle with noise or interacting in large groups. But I think the difference is when it really impacts on your day to day life, and that you're really struggling to form social bonds, to find work, to live a happy and fulfilled life. I think that's the difference, really.

So it was about seven years ago, I was working, my children, I've got three children and two on the autism spectrum. At that point, they haven't been diagnosed. I was working, I've always loved history, I've got a degree in history, and I saw that the charity, Kids in Museums, were doing the family friendly museum award. And as part of that award, when they had the shortlist, you would go as a family and be family judges. I was walking around a museum, it was the Museum of London actually, really watching my family and seeing how they reacted that I'd never really considered how the environment might impact on their visit, and why it might be difficult or how inspired they might be. It made me really analyse it in a way I've not really done before. And then a little while later, we had a bad experience at the Museum of London, where my daughter had a sensory reaction to tweeting birdsong soundtrack. It was just such a stressful situation, and I just thought, I'm sure there were things that the museum could do to support us on our visit. That really made a big difference. But seven years ago, when my daughter was finally diagnosed, I decided to quit my job, because I was just struggling, she didn't want to go to school. So to get her to go to school and manage all three kids and try and work, it was just all getting too much for me. And I thought, originally museums were going to be something just for me, I thought I'd go and volunteer one day a week in my local museum. That would just keep me sane, give me something to do, while the kids are at school, keep my work skills up, keep going out and communicating and doing things like that. So originally, that one day a week was supposed to actually just be for me really, because I love museums, and I love history. And then it just developed, I thought I would write a blog about volunteering, I thought maybe I'll go to some exhibitions and write about that. I wrote a couple of blogs, and I had about 10 views on them or something. And then we went to the Science Museum, and they run an Autism early opening called Early Birds where they open up, I think it's at 8 o'clock in the morning, before the crowds, and it's lovely and quiet. I wrote a blog about that, and it had 1000 views in a day, and it's been read about I think 8000 times. And it just really made me aware how many families need that experience, how many families feel isolated. And museums got in contact asking like, you know, we've read your blog, how can we do something like this? How can we reach these families? And I think from, it's really from there that everything started to grow and develop, because I realised the power of writing those kinds of stories, connecting to museums and to families. That was something that just grew and grew.

What are some of the things that museums can do to be more welcoming places for people with autism?

There's huge amounts that museums can do, and it varies depending on whether they're large or small museums as well. Not every museum needs to open up early. Big museums, like the Natural History Museum and the Science Museum, they are obviously so busy all the time. And it really works for them to open up early. But obviously, there is a financial implication to that, having staff in early, so quite often they need funding to be able to run those initiatives. But for smaller museums, there's lots you can do. Training and awareness for staff and volunteers, and that extends to security, front of house, people in the cafe, because quite often you find learning staff are really well trained. But if you leave the activity that you're doing with the learning staff, and then leave via the front, and you, you know, you have security guards that you might have a negative reaction with, that spoils the whole visit. So learning and awareness is really, really important. It also empowers staff to feel that they know more, they are not going to say the wrong thing. I think people worry that they are going to do the wrong thing and say the wrong thing. And it helps staff, that training helps staff in their day to day life, because quite often you speak to people and they have autistic grandchildren, they might have an autistic brother or sister. So there's quite a lot of awareness out there. But there are also misconceptions that children may be having a meltdown, so maybe crying or trying to run away or wanting to touch things. That's bad behavior, and quite often it's a reaction to the environment. So that training is key. And then for a lot of autistic people, knowing what's going to happen when you come to the museum can cause a lot of anxiety, because they can't really predict what's going to happen. What are the spaces going to be like? Are they going to be dark? Are they going to be light? Is there going to be loud noises? They might not like mannequins. So museums can do a huge amount by putting pre visit information on their website, so that visitors can prepare before they come. So they can have a look and see what's going to happen on the day. How did they get to the museum? This pre visit information needs to extend past the front door. So what's the journey to the museum? That's really important as well.

Yeah, sure. So I've just actually been working with the British Museum on their first early opening. So again, that is another museum that's very, very busy, long queues to get in, very difficult environment to be in with the crowds. So their early opening was about restricting the open space to a number of galleries based around Greece and Greek myth. But they also kept the great court open, so families could come and experience that without loads of other people. So they open up early in the morning, they train all the staff who are going to be on that day, so they are aware of some of the behaviors they might see. For example, some autistic children will flap or stim, they might spin around, and that that's ok. They talked about relaxing some of their rules that they might have. So around touching. I thought it was really interesting, we were in one room, and there was storytelling going on, and a girl was throwing her soft Teddy around, you know, and it bounced off this sort of ancient Greek statue. And I was really surprised, I was like, that's fine, you know, it's not doing any damage. On a normal regular visit, that might not be acceptable, but we are gonna just relax the rules a little bit here, which is really important. So for that event, a visual story was sent out beforehand via email. A visual story explains exactly what's gonna happen, where the toilets are, where every activity is, what you can do on the day, how to get to the museum. There was also a sensory map, which explains which areas in the museum are very dark, or light, or where you might hear noise. And then we had a number of activities on the day. These are just like any activities that you'd have on an event. There's just an awareness around the fact that some children might, for example, not want to get their hands dirty, some children are very sensitive to touch. So an activity where you might make something out of clay would be quite problematic, if you can't clean your hands straight away. My children are like that. They are like, yeah, that was great for 10 seconds, I need to wash my hands now. We had that going on, we had a sensory storytelling where children could take parts. So all this happened early, they restricted the numbers, so there weren't loads and loads of families there. And it was a fantastic event, my family came as well. I think half of the families that came on that day, it was their very first visit. It just shows you how important these things are.

So through your work with Autism in Museums, you promote events like this Early Bird mornings. Are there any that are coming up, that you are particularly excited about or you think they are gonna be really special?

There's so many now, I'm so thrilled that there's so many. When I founded Autism in Museums, I eventually put all that information about it on my website, and I put a calendar of events. Originally there were only one or two. Now there are so many events, and that is fantastic. But some of the really good ones, I think definitely for the big museums, the Science Museum running their first event for families after hours, which is really important because a lot of events are early in the morning, which suit a lot of families, my family are up very early, traveling into London is quiet at that time. But for many families sleep is a real issue, so traveling into London really early in the morning is just never going to happen. So having choice like everyone else has, a choice to visit when you want is really important. So the Science Museum is going to be running their first for families after hours, which is brilliant. Now I'm seeing it coming into, because you get autistic adults, not just children, it doesn't disappear when you leave school. And I'm seeing more venues thinking about their offer to adults as well. So the V&A have run a quiet opening, and just this week on Monday, I was at the Royal Academy for their very first relaxed opening for Antony Gormley. And again, that was such an amazing experience. I don't know if anyone has been to that exhibition, it's quite challenging to be in some of those spaces, with some of the objects. So to have a bit more time and space and not be full of crowds. And that was just an hour, that was 9 till 10, just that bit earlier, and that was just an amazing experience. They are looking to do that again for Picasso in March, I believe. So there's so much coming on for different ages, all types of museums, galleries. But if you look on the calendar on the Autism in Museums website, you'll see lots of different events all around the country as well, not just in London.

There's so many things, it's too many things I think I am finding at the moment. So I began mainly volunteering, and I volunteered in my local museum, which sadly, the local authority closed. So that was very difficult, but I wrote about that on my blog. But at the moment, I volunteer at the Museum of London, I am a collection care volunteer. I've only managed I think, one day this year, which is really, really bad, but they're brilliant. But going behind the scenes is really important and getting hands on with objects, because you remember why museums are there, and how much work goes into conserving and looking after and that's really important to me when I go to an exhibition. So I volunteer. I am also at the Globe Theatre, I'm on their access panel. We haven't done a huge amount again this year, but it's really important for me to stay in touch with different cultural venues, not just museums, but theaters as well. So I write a tincture of museum blogs, I write about volunteering and exhibitions, and that keeps me really, really busy. I go to press views and get to lots of different venues. Obviously, Autism in Museums, this began more as just me and my passion, it wasn't about earning money or anything. But I just got so busy, and so many people are asking me that that has now developed into consultancy. So I actually earn money, after like, six and a half, seven years. Yeah, that's been amazing. That is growing, I do training, I work with different venues, it's just been fantastic. So I am also on the National Lottery Heritage Fund Committee for London and the south. So they're a funding body that decides where lottery funding goes for good causes. I've been doing it nearly two years, that's a really challenging role, because funding is always obviously on the decrease. Lots of projects come to us for funding, and they're all worthy projects. As a committee, we come from different areas of our region, so down to Cornwall, and down the south coast, as well as London. And we come together to make decisions on which projects should get funding. We really look at not just here's some money for you to go and build a new exhibition, or a new museum, but how are you going to work with volunteers? How are you going to support them and train them for the future? How are you going to be accessible? How are you going to take this money, but really make it work for everyone? And it's really challenging, but I love it because again, you can, you get to see things that are happening across the whole country, which is fantastic.

So prior to your work with museums, you worked as a researcher, and that was for the Financial Times, I believe, it was the London School of Economics. And then some changes in your personal life, personal changes in your professional life. Can you go into that story in a little bit more detail?

Yeah, sure. A pretty conventional route, I did a degree in history because I just love history, I love doing research. I realised, really, I'm just doing research, even now for the blogs, I've basically just carried that on the whole time. But I did a degree in history, I really didn't know what I wanted to go and do, which lots of people don't know, and still don't know, it's not like it magically becomes clear as you get older. I did a graduate trainee year at the Financial Times. And then I did a master's in Library and Information Studies, worked in a law firm for a while, then the researcher role came up at the FT and they said, would you come back? And it was fantastic, because every day was different, and you never knew what research you were going to do, so that was really good. And then in my last role, before I quit, I was at the London School of Economics, and it was great. When you have kids, you know, you can work full time, but it's difficult. And financially, sometimes you have to. But I actually went on a one year contract there, because I'd had my eldest daughter, and I was worried that if I stayed in one role, and then maybe had a break, it's really hard to then get another role. And I saw this job come up, which is a one year contract, and I thought it can't hurt to just go and do that. I think it was two or three days a week. They ended up extending it basically, which was fantastic. And I've been doing that for six, nearly seven years. And then all the stress at home, three young kids, and lots of things happened, you know, just I got a new boss who is younger than me, it's always one of these sides you go, ok, I'm not going anywhere. But I'm not working full time, and you can't always run a department if you're just there, like one and a half days a week. Things happened in my personal life, and I think I was at breaking point, I think to be honest. It was a very hard decision to quit my job. Financially we were kind of lucky and unlucky. My father in law died, who left us a little bit of money and me working wasn't the most important thing. But it was really scary to have always worked, and then to have to step away from that, and a degree and a master's and you feel like you're throwing it all away. That was really hard. Volunteering was supposed to just be something to keep my hand in, but it has been life changing, definitely, 100% and the best thing I ever did. And I do completely different stuff now. And if you told me when I quit my job that in seven years I'd be doing all this, I would not have believed it at all. I think you don't have one career anymore, you don't have one thing that you start and finish with. There'll be times when you want to change, and that is really hard. I think coming into museums is really hard, the pay is terrible, absolutely terrible, coming from a different field. For me to earn what I aim for, it's just not gonna happen. But I think it's how you approach it. If you are committed and passionate, that will take you a long, long way, definitely.

Can you start with the British Museum possibly? Yeah, if we can start with the British Museum, can you describe what you did with them?

Yeah, sure. A pretty conventional route, I did a degree in history because I just love history, I love doing research. I realised, really, I'm just doing research, even now for the blogs, I've basically just carried that on the whole time. But I did a degree in history, I really didn't know what I wanted to go and do, which lots of people don't know, and still don't know, it's not like it magically becomes clear as you get older. I did a graduate trainee year at the Financial Times. And then I did a master's in Library and Information Studies, worked in a law firm for a while, then the researcher role came up at the FT and they said, would you come back? And it was fantastic, because every day was different, and you never knew what research you were going to do, so that was really good. And then in my last role, before I quit, I was at the London School of Economics, and it was great. When you have kids, you know, you can work full time, but it's difficult. And financially, sometimes you have to. But I actually went on a one year contract there, because I'd had my eldest daughter, and I was worried that if I stayed in one role, and then maybe had a break, it's really hard to then get another role. And I saw this job come up, which is a one year contract, and I thought it can't hurt to just go and do that. I think it was two or three days a week. They ended up extending it basically, which was fantastic. And I've been doing that for six, nearly seven years. And then all the stress at home, three young kids, and lots of things happened, you know, just I got a new boss who is younger than me, it's always one of these sides you go, ok, I'm not going anywhere. But I'm not working full time, and you can't always run a department if you're just there, like one and a half days a week. Things happened in my personal life, and I think I was at breaking point, I think to be honest. It was a very hard decision to quit my job. Financially we were kind of lucky and unlucky. My father in law died, who left us a little bit of money and me working wasn't the most important thing. But it was really scary to have always worked, and then to have to step away from that, and a degree and a master's and you feel like you're throwing it all away. That was really hard. Volunteering was supposed to just be something to keep my hand in, but it has been life changing, definitely, 100% and the best thing I ever did. And I do completely different stuff now. And if you told me when I quit my job that in seven years I'd be doing all this, I would not have believed it at all. I think you don't have one career anymore, you don't have one thing that you start and finish with. There'll be times when you want to change, and that is really hard. I think coming into museums is really hard, the pay is terrible, absolutely terrible, coming from a different field. For me to earn what I aim for, it's just not gonna happen. But I think it's how you approach it. If you are committed and passionate, that will take you a long, long way, definitely.

Yeah. I mean, I volunteer with them. It's getting harder and harder to find the time to do that, but I like the flexibility that they offer with their volunteering. And because it's behind the scenes, I don't have to be there every week. But the staff are really, really supportive and always happy to share their knowledge and experience. That's why I'm still there all these years later.

At the Museum of London?

What changed in what respect?

With regard to provision for autistic people.

Ok, yeah. They also run early bird events now as well. They have two sites, Museum of London, Docklands and the main Museum of London site. But it's a really interesting time for the museum because they are planning a brand new museum in Smithfield. So they're thinking about what a museum is, and what museums should be, it is really interesting at the moment, and it's a really interesting place to be to hear those conversations about access and how we open up collections to everyone.

Are there any other museums that you work with on a regular or semi-regular basis through either Autism in Museums or the National History Heritage fund?

I work with so many, it's fantastic. I have to give a huge thank you to the Jewish Museum in London, they're a lovely museum who gave me, one of the very first museums to actually pay me, which was brilliant. I think it's always been really hard because I'm tossing up, like, I want to do good, and I want museums to change, and you just want to offer that for free. But when it comes at the expense of your life and time and everything, there has to be a change. But another organisation that I work with a lot is the Kids in Museums, the charity. So I helped do the first round judging for the family friendly museum award this year. And that's brilliant, because you do get a snapshot across the whole country, including Scotland and Wales about what's going on in museums, from small volunteers on museums to the really big museums. What was lovely is that so many that came through, it's finally judged by families, but so many who won their categories I've worked with or have knowledge of, and I know that they're doing fantastic stuff. So for example, the Museum of Liverpool, they won the large category, and I did some fundraising for Autism in Museums, and they offered me a room to give training for free, so they were fantastic.

So obviously, there's a lot of focus on young people when we talk about autism. Who tends to be the main audience for your work with Autism and Museums?

I think mainly families and children. That is where a lot of museums focus and funding goes. Teenage market is really difficult for museums, regardless of whether you have any additional needs. But I think museums can do so much for that age range, definitely. But I'm continually getting people saying, well, that's great, but that's for kids, so I can't come to that. So museums are looking at, some will offer just a sensory afternoon, so some heritage venues like castles will offer just a sensory afternoon open to everyone, not restricted to children, where they look at their environment and offer visual stories and support information. I think there is becoming more of an awareness that adults would benefit. So I'm definitely seeing that starting to come through. I mean, like Royal Academy, I mean, obviously, that was open to families, but it's an opportunity for adults as well. And you are seeing that starting to come through which is fantastic.

To date? That's really difficult. I'm hugely proud of Autism in Museums, because it has been challenging to keep taking it to the next level, and it's needed a huge amount of work. And I do feel it's really making an impact. That's really important to me, because I can see the impact it's made on my family with my daughter and the confidence that she's got from traveling into London and visiting museums and being inspired by theater because we went to the Globe to a relaxed performance. That's led on to her doing drama at GCSE, and she has an amazing singing voice and she's learning to perform. She was in, you know, she went and saw Bob Dylan Girl from the North Country at the Old Vic, and I never thought she would get in there. You know, she'd never been in a theater. And they were brilliant, they did visual stories for her. We went up the day before to have a look at the theater. The fact that we go up to London regularly meant that wasn't such a big issue, because I couldn't go with her, she went with the school. I sat there all night thinking they are going to phone and say that she had to come out. And they were brilliant with her. They said, look, if you need to leave the theater you can, and we've got it running on a TV screen in this room, so you can just come and sit in here. And that just seemed to make all the difference. She came in that evening and she was flying as high as a kite. She was so inspired, and she learned the songs and she sang the songs. And that's just priceless, just to see, well I say a young person, but any person inspired by something they've seen or heard or touched. I just want that for other families, which is what drives me all the time, because there are so many families who are really struggling and feel very isolated funding for schools. This is all over the news at the moment, special education is just being cut all the time. And just having time to go out as a family and enjoy yourself, it's not all about education and learning, sometimes it's just about being together.

Claire, thank you so much.

Thank you.

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