The Autistic cost of travel – The Autistic Advocate

Source: The Autistic cost of travel – The Autistic Advocate

 

“Autistic people exhaust ourselves doing things the non-Autistic way, in every aspect of our lives”

Recently a journey of epic proportions was undertaken by myself.

It was a journey that covered two towns, about 20 villages and lasted for nearly an hour and a half.

I travelled the grand distance of 11 miles on the bus.


Actually it was a lot further than 11 miles, as the bus went on a really unreasonable ramble, akin to my wife, Michelle, telling one of her stories, which you generally need a map and a compass for in order to get her to the point

Ducks to avoid a flying shoe

Any journey undertaken by any Autistic person, be they 38 or 5 needs to be planned properly. An Autistic adult or Autistic child can’t just be spontaneous.  It just doesn’t happen.  We like to adhere to our routines because they are safe and comforting.  We like places we know because they don’t tend to change that much.  We can visualise pretty much exactly what it will be like, have an idea of how busy and noisy it will be, know if something we find soothing and familiar is there.

The reason we need to plan so meticulously and the reason we cling on to routine and abhor change, is because an Autistic person, adult or child, goes through the permutations consciously of every possible happening that might occur at every step of a journey, before that journey happens.  Every sight, every sound, every smell, every conversation.  The more information we can pre-fill, the more likely we are to predict the exact nature of the journey, so the less we have to stress.

Even a short trip, needs meticulous preparation.

I was travelling to a village local to me in order to go to a meeting.  I had to meet my friend, Christine from The Life of Reilly, there by 10am.

So first I had to figure out how to get there and when I needed to leave by in order to be there on time.  Luckily there is a bus stop is 200 yards from my front door. Yay me.

So, I jump on my local bus company’s website. And immediately jump back off it again. It’s horrific.  The journey planner jumps around all over the place and you have to specify exactly which bus stop you want to get off at.  I don’t bloody know which stop i need, I’ve never been there before!

I move over to Google and put in my location and desired destination plus the word ‘bus’.

Now, I have my issues with Google, but generally it does what it says on the tin:

It gives me my bus number. Hoorah.

All i need to do now is go back to the bus website and put in my number and, hey presto, a magical timetable appears with the most ridiculously small print on.  After a few passes with an electron microscope, I have my bus and my time.  I have to leave at 0830 to be there by 10am.  An hour and a half to travel 11 miles.

I have spent my whole life travelling on public transport because I don’t drive.

I actually love it.

What I don’t love though, is other people travelling on Public Transport with me. For starters lots of them have the audacity to actually sit next to me.  Can’t they see that I’m shrunk into my seat, literally jammed up against the window in order to be as far as humanly possible away from them?

I mean people talk, they smell, they’re loud, they smell, they insist on knocking into you, they smell… some of them REALLY smell…

You get my drift?

Anyway… AN HOUR AND A HALF TO TRAVEL 11 MILES!

I could probably walk it in that time… ish… but I’d get really tired…

So, i have figured out my bus and my anxiety levels have already cranked up several levels.  I’m actually feeling anxious just writing this and recalling it.

I spent the next hour or soGoogling the place I was going to, looking at images of the village, the building, the inside of the building…  Google Maps has a handy section called street view, where you can actually move right up to your destination and see it from all sides (assuming there is a road).  I can’t begin to tell you how much that has helped me.  For some buildings you can actually go inside and check the layout of public areas.  The reassurance that can give is incredible.  Knowing what to expect helps take down those anxiety levels greatly.

The next morning I found myself standing at the bus stop. Christine has text me to say she’d be running late but I’m invested in my bus now.  This is my bus and nobody is going to take it away from me…

Now, did i get a good nights sleep in preparation for a journey and a big meeting?

Did I shite.

I stayed up till 2am writing a blog. Procrastination thy name is Autism.

So I’m standing at the bus stop utterly shattered and exhausted and staring down the road at the bus that isn’t appearing.

I check my watch.  It’s a minute late but I’m already nervous.  I’m aware enough and old enough to understand that sometimes shit genuinely happens, sometimes the flow of traffic is heavy and buses get delayed, but is that the first thought that springs to my head?

No.

Of course not.

I’ve described the inside of my head in my article called “You should see the world inside my head” (You really should see the world inside my head, it’s pretty incredible and very similar to a lot of other Autistic minds) and a sensible thought that the bus is merely late, is not what happens in a situation like this.

You see the bus was due to arrive at 0830.  I got to the bus stop at 0825.  So of course my first thought is that the bus came five minutes early and I just missed it.

The klaxxon sounds.

The lights flash red and in the distance the wail of the air raid siren starts to rise up as, the words “DON’T PANIC!” emblazon across the inside of my eye lids and I enter panic mode…

In a completely non-scientific explanation: Panic mode for an Autistic person sits slightly above baseline anxiety.  Our anxiety levels are notched way higher than a non-Autistic person, which is part of the reason we so easily trip into Meltdown.  As this handy info-graphic shows:

Yes, OK, it is a little tongue in cheek, but is a handy reminder that we are anxious creatures, mainly because we are are sucking in and processing consciously so much more information than a non-Autistic person.

Luckily for me the bus appeared at that point.  It beat the ambulance for my heart attack by several seconds, so i get on the bus instead.

Yes… The bus…

Like I said, I like public transport but this bus seemed perfectly devised to drag an Autistic person through every level of sensory hell.

Firstly the driver didn’t wait for me to sit down, but instead appeared to wait until i was at my least sure-footed to engage his afterburners and hit 4 gees.  I’m not the most steady person on my feet at the best of times, as I have issues with balance due to Dyspraxic tendencies and Meniere’s Disease, so i kind of got launched down the bus.

I somehow made it into a seat and then it just went downhill from there.  Every stop we made, more people got on and nobody got off… More and more people filled the bus from back to front.  It was like a never ending conveyor belt of them.  I don’t know where they all came from but the bus got fuller and fuller, the air become hotter and hotter and closer and closer.  The noise levels cranked up, babies started screaming (I don’t even remember seeing any babies…), the guy sat next to me whipped out the most awful smelling Subway sandwich and seemed to snort fumes of noxious stink from his nostrils with every mouthful and then give the sandwich a little wave so the smell wafted around.

At this point I’d like to remind you that this bus journey was ONE HOUR AND A HALF hours long…

Literally every sense was being assaulted.

I had a moment of clarity and thought about the fact that i knew I’d be writing a blog on travelling around.  So I switched on the voice recorder on my phone.  Now before you click play, please make sure you have your audio turned up as high as it will go, just so you can have a remote taste of what it sounded like to me:

As you can tell it was a little, excruciating.

I was getting to the point on the bus journey where i was entering unknown territory, the worry about not knowing where to get off increasing.  On our buses now we have this handy talking lady.  She tells you the next stop.  The problem is that the names of the bus stops do not always correspond to places on a map.  They are obscure local place names, or the names of landmarks that don’t even exist anymore.

So, Google Maps again.  It has a handy satnav and recognises if you are travelling.  So you can track exactly where you are at any given moment and see where you need to be.

So i was able to see how close I was o my stop and judge how quickly i needed to ring the bell and get off.

Now all I needed to do was fight my way to the front.  I needed to ask sandwich man to shift.

I’m a selective Mute, which means at times of high anxiety I can go non-verbal.  The name is a bit misleading, it implies that someone is choosing not to speak, when in fact the opposite is true. The words get stuck in my throat, sometimes i can physically choke on them and it actually hurts to have them there trapped.  The more i try to speak, the less i can.  It’s much more manageable than when I was a kid, because i can recognise the times when I know I won’t be able to form words. I talk about this in my articles called “Talking without words” and “An Autistic Education

An hour and a half of a bus ride like this is one of those times when I know I won’t be able to speak.  So I kind of wave at Sandwich man and make a gesture which i hope translates to “Get out of the way, Sandwich Dude!”  It must do, because he does.

I push my way down the bus, cringing at every touch and nudge as I move past passengers who stare me down and refuse to budge an inch, as though I’m invading their territory.

I somehow make it to the front just in the nick of time as the driver slams on the brakes making everyone do that pitch-cling on-forward-back-stagger move and, with a sigh of relief as loud as the sigh the doors make when they open, I step down to my freedom.

The walk from the bus stop to the cafe takes seconds.

I’m there in plenty of time. The cafe is quiet. I manage to order a drink by pointing at the menu (ignoring the strange looks from the lady at the fact that i haven’t uttered a word).

I go and sit in the corner and try to figure out how to breath again.

25 minutes later and I’m happily Stimming, my leg jigging furiously, I’m scribbling in my notebook whilst nibbling a bacon sandwich and talking to myself.

Then the nightmare begins.

I’d actually been engrossed in writing and begun to hyperfocus, when i made the error of looking up.  There were thousands of them streaming towards the cafe doors, rivers of small things hungry for chocolate and cake and Fruitshoots, snotty and raucous and sensory overload inducing.

OK, not thousands, that might be a slight exaggeration, there may have been five of them.  But it was enough to make what had been a quiet cafe sound like this (Oh remember to ramp that volume back up, because Autistics hear EVERYTHING and all at the same level):

This hell did not go on for long, but the noise was so loud that I had to move from my place against the wall because I could sense the sound literally bouncing off the wall and into my left ear.  So in an unprecedented move I had to go and sit in the middle of the room. That just does not happen. Always keep your back to the wall where you can watch the room and snipers only have one line of sight…

By the time Christine and Scriptwriter and Actress, Alison, arrived I was utterly exhausted.  Not that I let on that fact though.  Pull on the Mask (If you don’t know what Masking is, check out my article called “How to hide your Autism“) and away we go.

My meeting was too important to miss as Christine and I were meeting with Kevan Jones MP to discuss diagnostic waiting times, some of the problems parents with Autistic children face and also Christine’s wonderful play, ‘The Life of Reilly‘, which is being made into a short (and hopefully full length) film – I’m speaking at the premiere in June.

The good news is, I got through the meeting and represented myself well.  But the whole experience wiped me out.  I was utterly exhausted.  Normally just a meeting like that would be stressful and exhausting on it’s own, but when you add in everything else, it’s beyond comprehension how tiring it is.  It was no wonder I could barely walk the next day.

I’m 38 years old and pretty self-aware, I know how to do self-care for myself and something like this, which most non-Autistic people wouldn’t bat an eyelid at, or maybe would feel a little tired over, emotionally, physically and mentally exhausts me. Can you imagine what it would do to a child?

Yet most Non-Autistic parents question why their children Meltdown on trips, or days out.  They wonder why their child doesn’t want to socialise at the weekends, or go to after-school clubs.

I hear so much of: “why can’t my child just…?”

The reason they cannot do what you do, or have to do things differently to you, the reason they cannot do what other children do, or have to do things differently to them, is because they are different.  The only person that can help them in this is you, as their parent.  Help them to become aware of how exhausting simple things can be, teach them to self-regulate and self-care, help them find the limits of what they can successfully achieve and to not beat themselves up when they do too much.

I’ve tried to keep this light, but this misunderstanding of what Autistic people can do, what we go through is a tiny part of the myriad of reasons so many mental health problems are connected to Autistic people.  This is a tiny part of why Autistic people have an average life span of mid 30’s to mid 50’s.

Autistic people exhaust ourselves doing things the non-Autistic way, in every aspect of our lives.

When we talk about burnout, this is literally what we mean.

Help your child find the Autistic way to do things and watch them soar.

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