You probably know a bit about what autism means, but here’s a quick recap.
Autistic people all struggle with communication, socialising, and flexible thinking. Many of us also have problems with sensory processing, self-regulation, and “meltdowns” or other catastrophic reactions.
It’s a “spectrum” condition, which means that different people are affected differently. Some of us can live fairly independently, and others can’t. Some can drive but not catch the bus, others can catch the bus but not drive. A popular phrase is “if you’ve met one autistic person, you’ve met one autistic person”. Very few things apply to all of us.
It’s a lifelong condition and in most cases, we don’t know what causes it. It’s likely to be partly, but not completely, genetics.
There are around 700,000 autistic people in the UK and about 12,000 in Surrey.
Here’s my attempt at an autism acceptance month blog post. It’s in the second person because that’s the easiest way for me to write, and it’s not perfect because I’ve learned that it’s much cooler to do things imperfectly than to not do them at all.
April was Autism Acceptance Month.
You used to think that if you ever wanted to not be autistic anymore, you’d just not tell people. You didn’t have to be autistic if you didn’t want to be.
You’ve now come to the conclusion that’s not how it works. Your common sense and life skills are slowly improving as you work on them, but you’ll always be obviously different.
And you need to accept that so that you can learn ways to cope and to change the world around you to be more okay. So you can live.
It goes something like this:
You have to go upstairs.
To begin with, in the back corner of the library, you need to type a number into a keypad next to a door, then push the door open and step inside.
First, you notice the warm wind hitting your face. Then it’s the overpowering smells. Next is the clutter and the obstacles, followed by the buzzing and echoing and kitchen and machinery noises. The harsh lighting isn’t helping.
You now need to make it through the corridor and type a different number into a keypad on the other side.
You can’t shut your eyes because the obstacles change multiple times a day. You can’t put your hands over your ears because you need to type in the number. You also can’t go back if you panic too much because the first door locks behind you and requires a code again. The only thing you can do to make it better is to hold your breath.
If you make it through the second door, you’ll notice the loudest, most painful and overpowering buzzing noise in the building. If you’re lucky, the smell won’t have travelled too much into here – either way, you have to breathe now. The lights are distracting and bright and different. One of the circular lights on the wall, about halfway up the stairs, is where the buzzing noise is coming from – it’s easy to spot because it’s a different colour from the rest. The square lights are mesmerising and unreachable.
The next problem is of course the stairs. There’s nothing between you and the ground except a small railing, and it’s terrifying and dizzying and you’re terrified you’ll die. You also have to walk right next to the loud light, and almost within touching distance of the square lights.
I usually just get the lift, even though it’s much slower.
But if you’ve made it up the stairs, you’ve made it through the worst. There’s still another keypad and some automatic lights to contend with, but that’s nothing compared to everything else.
Hot chocolate is upstairs, and so is Solar your weighted sloth. Your best work friend is probably hotdesking in the office, and you can see the town square from the windows. Upstairs will be okay.
It’s 9:00. You’ve turned on the lights and computers on your way in, and you’re drinking your hot chocolate and playing Animal Crossing. The library doesn’t open for another half an hour, but you’re in a shared building and plenty is going on already.
It’s 09:20. Your colleague’s not here yet. No biggie: they don’t start for another 10 minutes. They’re probably fine. Normal people aren’t an hour early to work. And you don’t start until 10, so really it’s not your business. You might put the money in the tills and do a quick walk-round check to make things easier for them.
It’s 09:25. They’re not here yet. This is normal and okay. You move your things to be not visible from the public area and go sit in the office and stay calm because they’ll be here.
It’s 09:27. They’re not here, which is fine because they still have 3 minutes, and you’re not going to panic.
It’s 09:28. You check the timetable to make sure it’s the right day and the right branch and the right staff and the right time. It is. Of course it is. It’s fine.
It’s 09:29. You will not cry. Everything will be fine. They’ll be here. You’ve pretty much forgotten Animal Crossing at this point in favour of calm grounding exercises. Your eyes are stinging with the tears you said you wouldn’t cry.
It’s 09:29:30. What if they’re dead? But you can’t think that! Because they’re probably fine! They’re always fine! Everything is fine! Normal people don’t panic! You’re not panicking!
It‘s 09:29:45. The library opens in 15 seconds. What are you going to do? Probably open the library. But you start at 10 and know you won’t be paid for the extra half-hour because you shouldn’t be here, and what if there’s a bus pass and what if you have to close again immediately and be sent to another branch and what if they’re lost or dead or injured or maybe they’re panicking!
It’s 09:30. You open the library. You do not cry or panic. One of the regulars comments “You on your tod again today?”. Yes. Yes, you are. No one has an urgent problem, so you stand by the window looking out for your colleague.
At 09:31 you phone the big branch to ask if everything’s alright and if your colleague’s called in sick. They haven’t. The big branch is busy and they don’t have time for this right now. Your colleague must have gotten in trouble on their way to work. Some kind of accident or injury or something. They’re probably dead. Maybe you shouldn’t have opened the library. Maybe you should do the book drop. Maybe you’ll be lone working all day. Should you tweet that you’re closing for lunch?
At 09:32:18 your colleague arrives. “Traffic”.
…at 10:00 you officially start work, so by 09:57 you manage to convince yourself you’ll be okay.
You’ll be okay.
Or even this…
You can’t think through noises.
You can’t figure out how to use your phone.
It’s too loud.
Everything is too loud.
Your head is on the ground and the floor is hard and cold and you’re trying to think.
You remember you’re not supposed to bite the inside of your cheek, so you bite your tongue instead.
The floor isn’t cold enough.
You need to feel more pressure maybe.
You can’t breathe.
You hug yourself and scrunch up your eyes and you can’t think.
You can’t think.
You bite through the inside of your cheek.
An hour later there are noises and people and you need them to stop and you can’t talk.
You can’t talk.
You need a cup of water and your sunglasses and ear defenders and lip balm and weighted mammoth.
You can’t understand what they’re saying.
You need them to not be touching you!
You need them to stop touching you!
You can’t think through people touching you.
Monty the mammoth.
You sit calmly. You do your grounding exercises. You hold your mammoth. You drink your water. You will be okay.
You’re sorry. It was all too much. You don’t want it to happen again. You’ll say something before it happens next time. There won’t be a next time. You’re fine. This is rare. You’re doing well.
(There will be a next time).
The reason you have a day off in between every workday is because autism is exhausting.
It’s exhausting even without getting into the fact that other people are different and alien and don’t make any sense.
But the library is one of the good parts.
For £10.35 an hour (£9.50 on weekends), you run a library and you are happy.
You’d happily pay £10.35 an hour for the joy of it, but that’s possibly because you’re still not great at budgeting.
You have thousands of books. They’re your books.
You unpacked them and stamped them and gave them homes on your shelves, and you allow anyone to borrow them as long as they promise to bring them back in three weeks.
You help people with the computers.
You show them the simplest way to print a returns label, and offer them some children’s scissors and sticky tape so they can post their parcel on the way home.
You tell them that if their phone usually remembers their password for them, they can find it by going to Settings and then Passwords.
You help people travel the world with flight tickets and covid passes. People complain to you that “everything’s online these days,” but you think it’s sort of cool because that means you can help with everything.
You make bus passes.
“Smile as if you’re about to get on a bus!” is one of your catchphrases.
You’re a fountain of bus knowledge. You know about the secret buses on Saturdays, which companies let you use your pass before 9.30, and the best places to make connections.
You run amazing events.
You have about as much patience as the children, so you have a great instinct for when to abridge a book or song at Rhymetime. Your current favourite book is Superworm, and you skip over the entire plot in favour of just reading about how great the worm is.
The regular kids think Wiggly Woo is a snail song, The Wheels on the Bus is about dinosaurs, and Sleeping Bunnies can be sung about any animal, including snakes. Their grown-ups can now predict the punchline to every new joke you invent, and you know which ones to look to for help when you lose count in Five Little Ducks.
You even make library cards and amaze people with the services we have to offer.
“Children’s books can be reserved for free on a child’s library card, which means that if there’s a book you want to read but we don’t have it here, then if another library in Surrey or Essex or half of London has it, we can bring it here for you to borrow as if it was one of our books!”
You also make sure everyone gets a sticker for joining, and a sticker for using the self-service machine for the first time.
Libraries and chocolate milk are two of your favourite things in the world, and from your perspective, sitting in your library drinking chocolate milk means you grew up to be happy. You didn’t become an astronaut with several PhDs, and you don’t live in Paris with four pet rabbits, but you have libraries and chocolate milk and you’re happy.
You know now that you possibly can’t fix the whole world, but you can work in a library.
Things are good.
Things are good.
One of my favourite ever library moments was when I was running Lego Club in Slough Library, and a couple of the parents of the kids who came from the local special school asked if I was autistic. We then had a great and open conversation, and one said that it was amazing having me run the club, because I gave them hope that their kids would grow up to be like me.
Honestly, at that moment I rather hoped their kids would grow up to struggle much less than me.
But that was more than two years ago now. Life’s got easier since then. I’ve grown to accept my autism, and I have more support to help me cope with the world. Things are good.
I’m only an expert on myself. Even then I don’t always have the greatest insight, so I’m not quite ready to give tips on how to fix the world to make things easier for all autistic people.
But here are a few things that help me:
- This is the milkshake that gave me my energy and concentration back.
- This is the most useful alert card I have.
- These are my current favourite earplugs – they don’t block your ears completely, so they don’t affect balance or eating.
- These are my glasses that make things easier.
- This is the app I use when struggling to talk or remember what to say in public.
- Here’s the clinical trial I’m in – they’re still looking for more participants.
Some random thoughts that might be useful:
One thing I dislike is when people with autism or learning disabilities are referred to as “individuals”. Or “the individual”. We don’t use that word when referring to anyone else, and it comes across as othering. However, there is a lot of disagreement between autistic people and those around them about language, so my preferences won’t reflect everyone.
My favourite thing a professional working with me has ever done is my current community nurse rephrasing questions if I say I don’t know the answer, even when he knows I should know. If it’s a question I’m not expecting, I can’t always find the right thoughts and turn them into words. Especially not while everyone’s looking at me. That’s why it’s also really useful to be able to have a friend or carer with me during appointments – they can often find the words I can’t.
Here are some of my favourite non-fiction autism books:
When you want a simple, easy-to-read metaphorical explanation:
When you want lots of practical ideas for helping autistic people in your life:
- The Autism Discussion Page series
- Avoiding Anxiety in Autistic Children/Adults
- From Anxiety to Meltdown
- The Neurodiverse Workplace
- Autism: How to raise a happy autistic child
- Autism, Anxiety and Me
When you want a great book for an autistic pre-teen:
- The Spectrum Girl’s Survival Guide
- The Survival Guide for Kids with Autism Spectrum Disorder
- When you want to understand autistic people a bit better:
- What Every Autistic Girl Wishes Her Parents Knew
- Existing Autistic
And my favourite quote:
Thank you for reading!