This is a post I feel I have to write, but I am not totally comfortable with the content. It is too important not to write so I will do my best to walk a fine line between the words I feel need to be said and the words that cut too close to me.
I have three children, aged nine, five and three. The eldest has autism, specifically she was diagnosed with Autistic Spectrum Disorder, unofficially Aspergers. This is not a post about my daughter or her diagnosis. There are many great blogs out there about autism and what it means for children, adults and families. I can’t write those things.
Some days we are like any other family, no one on meeting my daughter would know she is autistic. Some days it is a very different story. I can’t write those things because some days there are no words. Maybe if I start to write about them I will never stop.
My daughter is her own person, she is not defined by her diagnosis. I have often read about parents who say their child is autistic, that is just who they are. Autism is not a disease, they do not suffer with autism, that is what makes them special. Some days I feel like that, some days I feel we do suffer with autism and all it brings to our family. I don’t feel I can write about my daughter, I don’t have her permission. If she reads this when she is older I hope she will understand why I did put pen to paper and shine a light on her life and our world. There are just two stories I will tell that relate to her directly because I feel they illustrate why museums everywhere need to do what the Science Museum has done.
My two worlds are colliding for this post, museums and autism. I have thought very carefully over why I need to write it and how to write it. I hope I get it right.
I try and tweet about museums doing good things for autistic children and families. It is important to spread the word when I see good examples of museums trying their hardest to help autistic families come and visit.
I was looking on the Science Museum website and I came across their Early Bird Session for autistic children and their families. The museum would be open from 8.15am just for our use, the rest of the museum not opening till 10am. Some galleries would be closed to the general public till 11am. This sounded fabulous, not only a chance to take all the kids to the Science Museum, but a chance to take them when it wouldn’t be so crowded and noisy, because these are the kind of situations that cause lots of problems for us. If you have an autistic child or you know a family or friend who is touched by autism you will know what I am talking about. I am not going to go through the things that my daughter finds difficult. If you are a museum professional reading this post please read The National Autistic Society page link at the end of this post, it will give you an idea of the sensory difficulties museums represent.
Part of me was also excited by the idea of going round the Science Museum before opening time. There is something so special about wandering round a near empty museum. I envy the gallery attendants and museum staff, it would for me be like having my own museum.
The information on the Early Bird Session also came through via email from the Burgess Autistic Trust. They are a great charity based in Bromley providing amazing support for families like us. So I booked us in, no cost involved, what could possibly go wrong?
I should say at this point, we do go to museums as a family. Not as often as I would like and usually the slightly smaller museums, the Horniman is a particular favourite. But it was only once I booked the session that I realised I have only been to the Science Museum with the kids once and even then not all of them. I think we went before our youngest was born. We have only been to the Natural History Museum once a long time ago when we only had one child. We live in South London, these museums are in easy reach and free, but I can’t remember the last time we went to either of them. It makes me very sad, they have the most amazing exhibits and activities I want to share with my children. But when I think about them in my head, I think too big, too noisy, too busy, the obstacles loom large because I am trying to protect my daughter. I want our day out to the museum to be fun, filled with wonder. Bad experiences are etched on my daughter like tattoos. She never forgets them. They colour her world. I see these imaginary tattoos on her beautiful pale skin and I remember every time we have had a meltdown, a crisis, a breakdown.
Story number 1 is coming up now…. (deep breath). We went to the London Transport Museum, first stop is up in the lift to the top floor to begin a historical journey of London’s transport, horse and carriages, lovely old buses. The lift has a year counter that ticks back through the years as you go back in history and up to the top floor. My daughter takes things very literally, she thought we had gone back in time. This sounds like a funny little anecdote, a humorous little story to share with friends until I tell you she was scared, she was petrified. She then refused to get in any lifts in case it happened again. Being stuck on the top floor of a museum with a pushchair and three kids, one upset and panicking, one toddler, one baby and one heavy pushchair is not a fun experience. To this day we have problems with lifts, as I said, my daughter never forgets.
Story number 2 ….(it is easier once you get the first one out of the way). We went to the Museum of London. We had been once before with no problems, we had done plenty of preparation work before the visit, pictures, plans, we talked about everything we could think of. First gallery has a tweeting bird song soundtrack, I barely noticed. My daughter started screaming, her ears hurt, she dissolved into a full on panic attack, it was frightening. She tried to take her clothes off, I didn’t know what to do.
Now I write these two examples, I realise they could have happened at the Science Museum Early Bird Session. But what the Science Museum is doing is giving us the opportunity to minimize the potential for distress by stripping out all the people and noise that normally form such a barrier. I can’t predict when problems will come, but I can take steps and measures to restrict their influence, to protect my daughter where I can.
I am not asking museums to change their galleries or change what they do. They cater to so many audiences, they can never be all things to all people. But they can adapt and be flexible and that is all I ask.
This post is a big thank you to the Science Museum. I was very stressed to begin with because we arrived late at 9.45, 15 minutes before they opened their doors to the public. On our part it was simply bad organisation, sometimes it is very hard for autistic families to get anywhere, aversions to leaving the house, the wrong pair of shoes, the wrong colour bus. But we were met with flexibility. Thank you to the girl on the front desk who was so welcoming and friendly. My daughter straight away said she wasn’t worried because everyone was so friendly. Thank you to the girl in the first gallery who promised to leave car construction kits for us as we had missed the early events. Thank you for keeping the Launchpad gallery open exclusively for Early Bird use till 11.15 so even though we were late we could enjoy a quieter environment. Thank you to the girl who showed us how to blow on dry ice and make patterns, to the girl who helped us fire rockets across the ceiling, to the girl who showed us how to give ourselves ‘ice moustaches’ on the thermal imaging camera.
Thank you to all those staff who came in early. Thank you so much. We had an amazing, fabulous time, all of us, parents included. I looked around the gallery, you would not have know it was an Early Bird Session for autistic children. All I saw were kids have a fantastic time. That is the whole point. Autistic children are not weird, or odd, or a problem. They are just kids. But if you had filled that gallery with three times the number of visitors it would have been a different story. You would notice the child in the corner screaming with his hands over his ears, or the child causing problems because he wanted to fire the same rocket over and over again. There may be children you wouldn’t notice, who were pale, shaking, struggling to process this world so full of colour, sound, touch and smells.
I can’t wait for the next Science Museum Early Bird Session. We will be there earlier this time, I promise.
So, thank you. Please carry on what you are doing, don’t stop. To other museums, if you have programmes for autistic families, fantastic, I hope we get to visit soon. To those who don’t, please, please think about it.
To all those families with autistic children, please give it a go, details on how to sign up are on the bottom of the page. I can’t promise you will have a wonderful time. Autistic children are all different, you can never predict what will work well, when the good days will come. But give it a go, if the Science Museum are taking the time and effort to offer a hand we have to take it.
It is hard to put into words what our morning at the Science Museum meant to us. I remember my daughter’s diagnosis meeting, we were in the depths of despair and shock even though we knew it was coming. The paediatrician said there will be lows, but there will be highs, the most amazing highs. You daughter will do amazing things, she will be an amazing person. Sometimes it is as simple as a trip to the museum, something many families take for granted.
My daughter’s memory for the bad times is matched by an amazing memory for the good times too. She will never forget the day she tried to grab the image of a watch, the day she looked up close at ice crystals, the day she fired an air powered rocket. I put her to bed that night, she said she had been thinking about it and she would like a microscope for Christmas.
Museums are so powerful, that is why I love them. But they have to try and reach everyone, because the rewards for all are unimaginable.
We finally got round to making our car construction kits!!
National Autistic Society – What is autism?
Science Museum Early Bird Session
The next Early Birds Event will be on Saturday 13 September 2014. To book please ring 0207 942 4777