Today we have Claire Madge, museum volunteer and mum of three, who kindly agreed to let me interview her about autism and museums.
Q. How aware were you of autism before your daughter was diagnosed?
A. I wasn’t really aware of autism before my daughter was diagnosed in 2012, certainly not the way it affects individuals and the impact it has on the whole family.
It took a year from first asking for help to receiving a diagnosis. For many years I just thought my daughter was ‘difficult’ and I was a ‘bad mother’ for struggling to cope. She is my eldest, so I had nothing to compare her to, I certainly wasn’t aware of the signs. I remember buying many books like ‘How to raise a happy toddler’, desperately trying to find out what I was doing wrong.
Q. She has Aspergers is that right? How does this differ from other forms of autism?
A. She officially has a diagnosis of Autistic Spectrum Disorder or ASD, sometimes this is also referred to as Autistic Spectrum Condition or ASC. It is a lifelong developmental disability that affects how she communicates and relates to other people, it also impacts on how she makes sense of the world. Because it is a spectrum condition it affects individuals in very different ways. They can be non-verbal with profound learning disabilities needing full time care, whilst some can lead relatively independent lives.
Aspergers is a form of autism, individuals can have average or above average intelligence with no delay in language development but may struggle with social communication, interaction and social imagination.
Q. What sort of challenges does a parent of an autistic child face when taking them out for the day?
A. Autistic children take comfort from routine and familiar surroundings. Going anywhere new, or changing that routine can be challenging and cause anxiety. If we are going out to a museum we haven’t visited before, if we are going on holiday or anything different we have to prepare my daughter by talking about what we will be doing and, where possible, showing her pictures of where we are going and what we will see when we get there.
Autistic children often have sensory sensitivities including sounds, sights and smells, this can also make getting out and about very difficult and stressful.
It can be hard to anticipate problems, which can make planning a successful day out really hard. We took a trip to a museum that had a faint tweeting bird song sound track, my daughter started screaming that it was hurting her ears, and she had a panic attack. We hadn’t really experienced anything like that with her before and it was very frightening.
Sometimes if she is anxious it seems to heighten these sensory sensitivities, which can makes life very unpredictable.
Q. You have said in the past that most museums often don’t cater for the needs of autistic visitors. Is that specifically children or do you feel that they are not catering for adults with autism either?
A. Museums in general don’t really cater for adults with autism. There may be the occasional specialist event or programme, but not a consistent approach, even within museums that run these events. Autism is a lifelong condition, children will not grow out of autism, they become adults with autism who need support, help and opportunities to live their lives to the full. According to a recent study, over 600,000 people are in the UK are living with autism, more than 1% of the population and they are not being catered for in museums1.
Q. What could museums be doing better for these visitors?
A. Basic, simple steps can make a massive difference for autistic visitors, so awareness and understanding of how autism affects the visitors to your museum is a great first step. It is not about radically changing your gallery spaces and the programmes that you run. It is about preparing autistic visitors with visual stories on your website, warning visitors if exhibitions have bright lights or loud noises. Providing quiet spaces with minimal sensory stimulation.
It is not just about autistic visitors, but volunteers too. Only 15% of people with autism are in full time employment, despite the fact that 79% of people with autism who are on out of work benefits want to work2. Welcoming autistic volunteers is one way museums can help, providing fantastic opportunities for individuals to get work experience in a supportive environment.
People with autism often have obsessions. Common examples include: computers; trains; cars; historical events; dates; and science. Obsessions often provide order, structure and predictability, they can be a route to relaxation and a conversation starter that aids social interaction. Ultimately I would like to see museums thinking creatively about using their collections to actively engage with autistic visitors who will often know more about collections than the curators!
Q. Which museums, if any, are getting it right?
A. There were a number of museums mentioned recently in the Museums Association Journal article3 who are running great programmes to engage autistic visitors and volunteers, including the Mary Rose Museum, the Museum of London and the Museum of Oxford.
From my own experience the Science Museum run a fantastic ‘Early Birds’ programme, where they open up the museum at 8.30am, exclusively for autistic children and their families. Many families are visiting the Science Museum for the first time because of the Early Birds events, they are reaching families who are isolated and feel they can’t visit museums during normal opening hours. We went together as a family and it was the first time we had all been to the Science Museum, it was a wonderful, memorable morning that my children won’t forget.
I have spent time talking to staff who run and work the Early Birds events and what impresses me is that they want autistic visitors to feel welcome and relaxed in the museum environment. It is not an event that ends and families have to leave, they are encouraged to stay, as the museum opens to the public, if they want to. It is a truly inclusive approach that I really admire.
I can’t explain how important it is to be able to go out as a family and visit a museum. It seems like a simple thing, but to have a day out together, in a supportive environment, is important not just for my 10 year old autistic daughter but for my 6 year old and my 3 year old too who so often miss out on the kind of experiences that other families take for granted.
Q. What do you think is the biggest obstacle to making improvements in this area?
A. The mistaken belief that it will cost a lot of money to welcome autism into your museum. The Science Museum do receive funding to run their Early Birds programme but not all museums are as busy as the Science Museum. Sometimes it can be as simple as putting up on the museum website when the quiet times are or which are the quieter galleries.
Putting a visual story on your website is not an expensive exercise but can really benefit autistic visitors. Some good examples are listed below4.
Ultimately there seems to be a fear of the unknown – autism is a wide spectrum and it can be hard to tailor events to cater for everyone. The reality is that you can’t cater for everyone with one event. You can only consult with local autism groups, listen to what they need, see what you can do. If you do run events, evaluation is absolutely crucial and the best way to see what works and what doesn’t.
If you just share with your staff information about what autism is and how it affects individuals, the problems they can face when visiting your museum, then that is a massive step forward. Awareness really helps, a bit of understanding goes a long way and costs absolutely nothing.
I’d like to thank Claire for taking the time to talk to us about this subject. I highly recommend her blog for more on this and her museum volunteering adventures. I’d also really like to hear from you all: does your museum have any interesting autism-related projects that we should know about?
- http://www.museumsassociation.org/museums-journal/features/01022014-welcoming-autistic-visitors (requires Museums Journal subscription)
- V&A Museum of Childhood Making SENse pre-visit booklet; London Transport Museum Social Story