Finding HopeTips For Travelling as an Autistic Person
Posted on July 7, 2018
Travelling is hard work for everybody. It’s exhausting and stressful and frustrating. But add in sensory issues or anxiety or whatever it is you struggle with and it can be a traumatic experience. Since we are now in the summer holidays and prime travelling time, I thought I’d put together some things that I found helpful to do as an autistic person who struggles with anxiety. I would like to point out (again) that there is a maddening lack of resources (and even simple testimony) for or from the point of view of autistic people. I spent hours searching for something but there was next to nothing; all the advice was for parents of young autistic children. Of course that information is important but it’s very demoralising to an autistic adult – essentially being compared to a child – especially one who was diagnosed late and has had to work so hard, often unaided, to manage their difficulties.
PLAN AHEAD – I know, this is my advice for everything, but it really does help. Struggling with unexpected change is a common trait in Autism and while planning can’t prevent all of those changes, it can make a huge difference. It can also give you a confidence boost, knowing that your actions have prevented a certain amount of anxiety.
SPEAK TO A TRAVEL AGENT – Being able to hand some of the responsibility off to someone else can be really helpful, especially if you have limited energy. You have to prioritise the tasks and if there are people who can help, that is a valuable resource. These people are also more likely to know the ins and outs of booking flights and accommodations etc and will therefore be more equipped to help you get what you need and want to get the most out of your trip.
CHOOSE YOUR ACCOMMODATION CAREFULLY – Having somewhere where you can have time out and recharge is so important when travelling. We all have different sensory needs and different things we can tolerate so choosing a place to stay is really important. For example, staying with other people (people I don’t know) causes me a lot of anxiety so when we look through Airbnb, we look at places that allow us to be the sole inhabitants. It won’t be the same for everyone but if you can identify what you need, you can hopefully find somewhere to stay that can be a restful place rather than a stressful one.
WRITE A LIST OF EVERYTHING YOU’LL NEED AND HAVE SOMEONE CHECK IT – Having a list makes packing so much easier and having someone check it for you just reduces the chances of making a stupid mistake like forgetting your pyjamas. Because that really isn’t something you need to deal with when you arrive wherever you’re going. Also make sure that you’ve got any medications or medical equipment that you need because those can be particularly difficult to get hold of, especially if you’re in another country.
PACK AN EMERGENCY KIT IN YOUR CARRY ON BAGGAGE – On the off chance that your bags get lost along the way, pack a change of clothes, some medication, etc in your carry on bag so that you can at least get up the next day and work out a solution.
BRING YOUR OWN FOOD – You’d need to check with your airline but there are certain foods that you can take in your suitcase that won’t cause you any problems while travelling. That means that, at the very least, you’ll have something to eat when you get to your destination. But in my case, it gave me a staple food that I knew I could eat in case I couldn’t find anything I could tolerate. It took away some of the anxiety, for which I was grateful.
PREPARE SPECIFICALLY FOR THE FLIGHT – Apparently, we’re flying in this hypothetical. Many people have fears associated with flying and while I don’t have any magic words of wisdom there, there are a couple of tricks to make it slightly less difficult, especially if you have sensory issues. Take sweets to suck on and relieve the pressure in your ears. Wearing a mask over your face can help if you’re worried about bad reactions to everyone’s germs in one confined space, as well as chemicals from perfumes etc. I’ve also found that a playlist of familiar music helps with the constant noise of flying. And wearing comfortable clothes: you’re most likely gonna look awful when you get there anyway so why bother with anything more than a T-shirt and leggings.
BUILD IN TIME OUT AND DON’T FEEL GUILTY FOR IT – Easier said than done, I know but burning yourself out in the first couple of days doesn’t make for a good trip. So try to take breaks between things and listen to your body: if you need to rest, rest. It will make the whole trip more enjoyable and worthwhile if you do.
As of now, I think that’s all I’ve got. But if you guys have any tips that you’ve found helpful, please let me know!
Autism’s Got Talent
Posted on June 20, 2018
A few weeks ago now, I got to perform at Autism’s Got Talent, a showcase for autistic people put on by the charity, Anna Kennedy Online. The show took place at The Mermaid Theatre in London and saw about twenty different acts perform, from music to dance to magic. It was a surprising, rewarding, and fun experience so I thought I’d write a little something about it.
I really wasn’t sure what to expect. Despite getting my diagnosis nearly three years ago, it’s only recently that I’ve started to attend events for people with Autism. It took me a long time to figure out what my diagnosis meant to me and I needed some time to find steady ground before I felt comfortable to… I guess, ‘publically identify’ as autistic, if that makes sense. So I’ve only been to a few events like this and I’ve honestly been blown away by how kind everyone is. Everyone working the show was patient and engaged and that made such a difference to the whole atmosphere; it made it a lot less stressful. As a performer, I’ve never been treated badly because of my Autism but I have felt like it’s an inconvenience, that I’m being difficult for struggling with certain things. But at this event, the things that are usually considered adjustments were already built in: there was a room specifically allocated for quiet time; the instructions and explanations were really clear; there was a meet and greet the day before (with some admin stuff) so that everyone had time to get used to everything; they had a fantastic team there to help all of the performers manage the day, all of whom only had two acts to look after; and if anyone was getting stressed, they did an excellent job of remaining calm and composed. These things made for such a supportive environment before and during the show and made the whole thing such a pleasure to be a part of.
The day of the show was a long one. We had a tour of the venue so we knew where everything was and then we got started on the sound check. Despite the long list of performers, I didn’t feel rushed at all: we were encouraged to take our time and get comfortable. Having gigged quite a lot in the last few years, I’m used to doing everything at breakneck speed (only to wait for ages for something else usually) and while I can cope with it, not having to was a real gift. I really appreciated that.
An interesting opportunity I hadn’t foreseen was the chance to be interviewed, about my experience of the show and my experience of Autism. As I’ve said, I’m still making sense of how Autism fits into my identity so that was a bit nerve-wracking, but apart from my constant fear that I’m embarrassing myself, it went okay. And it felt positive – and empowering – to talk about the way I experience the world.
Another thing that really helped was having people I knew with me. I had Richard – my cowriter, guitar player, friend, and general partner in crime – there as he was playing guitar for me but almost everyone had a family member there too and that was really nice. Again, I can cope with being by myself but having people there who know me, who know my anxieties and how to handle them, made the day much more manageable and enjoyable.
The sound check had been well organised so most of us were done by lunchtime. I ran out to do a few things and then had a couple of hours to chill and gather my energy. I definitely needed that. And then, all of sudden, it was time to get back to the theatre, take photos, and go to the green room.
I missed a lot of the first half because I had to be in the green room in preparation for getting on stage for my performance and, although I was sad to miss the performances, I got to hang out with some seriously lovely people that I hope to stay friends with. Obviously being autistic doesn’t automatically make all autistic people compatible friends but there is something pretty magical about meeting people who understand parts of you that others just don’t, naturally and without having to try (I want to write something more in-depth about autistic friends vs. non-autistic friends because I think there’s space for an interesting debate about whether it matters or not, but I did just want to point out the special-ness of having a natural connection with someone that doesn’t require either person to be anything but who they are). We laughed a lot, shared photos of our pets, and sang the Friends theme tune. As much as I love performing, I think that may be my favourite part of the experience!
When it came my turn to perform, we had a technical malfunction: the microphone didn’t work. That’s always a fun way to start a performance… It happens; it was fine. In all seriousness: I’m not fazed by performing anymore. I get nervous and restless before a show but I’ve done it enough that it doesn’t really impact my functioning or my ability to perform; I can be anxious and still handle anything thrown at me (such as equipment failure…) without falling apart. We switched out the microphone and started again. All good. The performance was so much fun (even though ‘Invisible’ is a sad song) and it was really special to play for an audience that was so genuinely supportive of the performers. If you’re reading this and you were there, you guys were wonderful! I also got to mention this blog before leaving the stage, which was cool.
In the interval, something really special happened. A number of people came up to me and told me how ‘Invisible,’ resonated with them or how they wanted to find my blog because they thought it would help someone they knew. The idea that something I’ve done – little old me – could have an impact on someone is so incredible and magical and special to me. All I want to do is create things and help people, and create things that help people. So those interactions are amazing to me. Does that make sense?
It was a really, really special show and there were some amazing performers. I’m so grateful to have had the opportunity to be a part of it. I’m still struggling with my words, as I have been for a while now, but thank you to everyone involved and everyone who came to and supported the show. It means the world to me and I know it means the world to everyone else who performed.
Autistic and Afraid of the Dentist
Posted on May 26, 2018
The title says it all, really.
As a kid, I was always really anxious about going to the dentist. I mean, it’s a person poking around inside your mouth with sharp instruments and criticising you while you’re completely unable to respond, clench your teeth, or even swallow. If that isn’t a nightmare, I don’t know what is. It was always a traumatic experience that ended in tears. So – of course – I needed braces and in order to get braces, I had to have dental surgery to remove two teeth and attach a little chain to another to gradually pull it into it’s correct place. That was attached to the braces, which was already a painful experience in itself. It’s also worth pointing out that during that surgery, another tooth was damaged and I’ve had trouble with it ever since. I’d stress about the next appointment for months and every check up was a distressing, exhausting ordeal. So, with all of that, I was pretty anti-dentist.
The Autism diagnosis changed things: people started to understand why it was such a big deal for me and new options became available. At the time, I’d been seeing a friend of my Mum’s who was a dentist and going to her practice, just to try and get used to the whole thing. But, as she worked privately, it really wasn’t a long-term plan and I was dreading the moment we’d have to find a new person and start all over again. But when we told her about the diagnosis, she told us about a specialist dental clinic, one that deals with all sorts of disabilities, and said that she would refer me.
Going to this place was an entirely different experience for me. The dentist and dental nurse were absolutely lovely and I’ve had the two of them ever since the first appointment. It never feels rushed and in that first appointment, we spent most of it talking, some about my dental history but mostly about me: my music, my pets, and so on. I almost forgot that I was at the dentist. At the end, she spent about a minute looking at my teeth (with only the mirror and nothing pointy) and then we were done. It had been okay; I could relax.
Over the following appointments, we took baby steps. She introduced me to all the instruments and let me touch them so I knew what they’d feel like. Then she’d use them on my teeth, one by one, explaining what she was doing and giving me lots of opportunities to stop. It was such a big deal to have people listen to my anxieties and take me seriously. I was and I am so grateful to them.
It’s been slow going with many freak outs along the way. The need for a filling threw a spanner in the works because I really wasn’t ready for all of that. But the crisis was averted when they referred me for a general anaesthetic – just as well as I ended up needing a tooth removed. Obviously, general anaesthetics aren’t a long-term solution to dentist anxiety but given the progress I’d been making, we all decided that it was the right choice. And once that was over, we got back on track.
I’ve been going there for two and a half years now and my appointment last week was definitely a milestone. I let the dentist clean and polish all of my teeth all in one go; no breaks, no anaesthesia, no nothing. It was all me. That is HUGE! I haven’t been able to do that in years and apart from the three-hour nap I needed afterwards, I feel pretty good about it. It wasn’t fun but my anxiety didn’t get to an unmanageable level and I got through it; I’m really proud of that. Really, really proud.
There’s a long way left to go but it actually feels like, one day, I’ll get to a place where I can go to the dentist and have a filling and it not be that big of a deal. Imagine that?! What a thought! I am so, so grateful to my dentist and dental nurse for taking such good care of me.
Anyway, I just wanted to make this post because I know that there are a lot of people – with Autism, with mental health problems – who really struggle with going to the dentist in the same way I do, and this route isn’t a well known one. But there are options other than just forcing yourself to go. So, if the dentist is a problem for you, please talk to your dentist, your doctor, and consult google. It shouldn’t be so hard and it doesn’t have to be.
Finding Hope 