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Autism makes travel a challenge. Here’s how I learned to cope (theguardian.com)
47 points by sandebert 10 days ago | hide | past | favorite | 60 comments





The real takeaway from this is about controlling sensory inputs. My wife is "neuro-spicy" and we have to consider those things when we go adventuring. What we've found best is to make sure there's always enough "controlled" things each day. Going to a museum, walking around a city, or going for a hike are great, but unpredictable. One or two each day are fine, but too many can cause burnout. Earplugs, books, snacks & water can help a lot with this stuff. Planning ahead is very important.

As an example, she absolutely hates airports but doesn't mind flying. The noises, announcements, people moving around, never knowing if your gate will change, all of it is awful to her. I don't mind the airport but once the plane is in the air watching the time tick down is torture to me. Everybody's a little different.

The "spoon theory" [1] can help things make sense, and it's a great start, but it's a bit more nuanced than that. It's more about controlling exposure to "unexpected" stimulus.

[1] https://en.wikipedia.org/wiki/Spoon_theory


> One or two each day are fine, but too many can cause burnout.

Maybe I'm also neurospicy, but I fully don't understand people who go on vacation to get up at 7am, and pack their day full of activities.

When I travel, with my wife or solo, we each pick one thing per day, and the rest we leave open to serendipity - or honestly, just sitting in the hotel room and reading a book. Otherwise, it gets wildly overwhelming.


I'm one of the people you don't understand. My wife is one of the ones who wants to relax, do one thing, even read a book in the room or at a nice location.

When we were first married, I didn't even realize there was a way to travel where you didn't have an itinerary jam-packed from 7am-7pm.

We found a nice middle ground, and I think I understand both perspectives now.

On the one hand (my hand), travel and vacations are expensive and getting more and more out of reach. There's definitely a need to plan in advance to make the most of your time, especially if this may be your one chance to travel to X or Y destination.

On the other hand, travel and vacations are often a much-needed respite from an increasingly mentally taxing work life. If you also mentally tax yourself planning out your vacation and continue to worry about making it to every stop on your itinerary, you will only see your stress levels rise, and the relaxation aspect of vacation and travel can be totally missed.


For me, the key aspect is obligation. It's great to plan out some options, but if they become obligations it doesn't feel like a vacation.

Rather like some different kind of work, agree

When I travel or go on vacation for like three days I try not to do anything

This is a book ad. Also, all the tips are: if you don't have a nose for adventure, plan ahead.

Probably worth a book though

The biggest things for me were:

1) Realizing that I was autistic

2) Developing better awareness for when I was in a taxing environment and better verbalizing my needs. People are usually happy to accommodate if you can communicate before you get irritable from putting up with that noisy restaurant.

3) Active noise-cancelling headphones (Bose QuietComfort)


This basically reads like how to travel with a child.

Some neural conditions are like that.

ADHD can make it hard to manage emotions, stay focused, or follow through on intent. I certainly feel like a child at my worst. I've finally started trying a new med recently.


Travel is really hard for me; very anxious. Trains tend to be better, especially business class.

checklists and lots of planning doesn't ever make it that much better.

My 1 kind of dream is that I get pilots license and fly myself wherever I want to go.


Wait you think flying a plane is a more relaxed experience than going on a trip?

>Wait you think flying a plane is a more relaxed experience than going on a trip?

Technically I'm not a pilot so I don't really know tbh. Xplane is relaxing at least? Hence the dream factor.

But I imagine, I'm in control and it lets me get around faster then anything on the ground.


As long as I have a weed penjamin I will be ok. Fortunately TSA doesn't care about these and I travel with them often.

I don't know... I've met plenty of people like this who definitely aren't autistic.

Question my family thinks I have autism how do I get tested without insurance?

You could always start with the self-assessments at https://embrace-autism.com/autism-tests/ but if you want an official diagnosis you'll see a doctor, with or without insurance, whatever that may mean for your circumstances. (In mine, it would mean "paying for the test out of pocket".)

Ty for sharing the link. I think the problem I'm having with this is i don't think the answers fit what I think? For instance "I know how to tell if someone listening to me is getting bored." I just assume everyone is bored when I speak which option do I choose for that?

I have autistic people in my family, and one of them said (jokingly) that not knowing how to answer the questions on self assessment forms should be enough evidence of autism.

It was a joke, but there's something to it. People's autism can manifest in many different ways, but from what I have observed:

- Language seems full of ambiguity. ('How often is "often"?', or 'Concentrate on the full picture? It depends on the picture!')

- Reading too much into a question, so everything sounds impossible. ("How can I really know if someone is actually bored or pretending to be bored?")

- Questions from a neurotypical perspective seem absurd, since your experiences are so different. (Adaptive behaviors like assuming people are bored could make this seemingly simple yes/no question irrelevant.)

There's probably more.


I've gone through a bunch of these, and had people with formal autism diagnoses go through them, and people who definitely are not autistic go through them, and we compared results. (There were stark differences.)

Anyway, the tests on that site usually have some commentary (before the test itself) that helps explain some situations where you may get hung up on which answer is "correct".

It's worth noting that the "allistics" who cooperated with me on this had no difficulties whatsoever with any of the answers and found the questions more or less absurd and completely unrelatable.

Rather dramatically different experiences of the world, apparently.


Then you put "no" since you clearly can't distinguish when someone is bored.

Assuming boredom is not necessarily an inability to determine it, it may be an inability to accept a positive answer, as would be the case with poor self-esteem. Someone could of course both be autistic and have low self-esteem, and they may be related for complex reasons, but they aren't necessarily. This is why just taking random surveys without an expert is not a good way to diagnose.

In my experience, the most reliable informal indicator of autism is if basically all of your friends are diagnosed autistics. It's like that study where neurotypicals were able to point out the autistic person in a room simply based on whether they "feel different" - this ability to tell whether someone shares your way of thinking is actually common to most neurotypes, including autistic neurotypes. One typically ends up subconsciously selecting for neurotypes similar to their own when choosing who to make friends with. This isn't to say that they don't make friends with other neurotypes, just that they're more likely to make friends with similar neurotypes, and the majority of their friends are very likely to have similar neurotypes to their own.

Of course, going to a professional for a real assessment is the only thing I can really recommend. This would certainly be strong supporting evidence though, and meets my standard for self-diagnosis.


no i meant in a life spanning 20 something years I've only met two people who could talk to me for an extended time isn't that a good metric to use to say I'm boring like objectively?

> I just assume everyone is bored when I speak

Sorry to say, and this is not a diagnosis, but that's more common for anxiety and depression than autism.


I think it can be common among others as well :)

The reason for why you assume this makes a big difference.

Unfortunately anxiety and depression are also very common comorbidities in autism, so there's that overlap too.

No single question, or even single form, would be enough to tell whether someone is autistic or not.


Anxiety and depression absolutely do not contraindicate autism. Where did you even hear that?

You know, detail-oriented thinking as in autism can make it a lot easier to fixate on specific negatives or anxieties compared to neurotypicals.


Speaking more broadly, try taking the test with someone who knows you well.

When I was tested for autism, my interviewer requested my wife be there specifically to help answer some things which I did not understand fully and didn't have good context for. It was helpful both for the diagnosis and to open the door for my wife and I to have better conversations about my needs.

... The irony of autistic folk having needs but having considerably more trouble communicating those needs, especially while burnt-out and needing more, is it's own, considerably large, domain.


I guess the main question is why do you want to get tested? What are you seeking to get out of it?

If you had autism, what would you do with that diagnosis? There is no pill for autism.

In the end, provided you've been functional in society so far in your adult life, a diagnosis won't change _you_.

What a diagnosis can do is lead to an in-road for specific types of therapy designed to help you cope with specific symptoms and/or navigate through social life.

But that kind of therapy is not free in the US.


A diagnosis can mean accommodations, e.g. if you take a standardized test and have a diagnosis, they'll let you take it in an isolated environment.

Might want to try looking for neuropsychologists in your area that specialize in autism. There are tests they can do to diagnosis various neurological issues and some behavioral issues. Depending on your area, they could be expensive (around DC, they can be $5k) and testing could take a full day.

it's possible it could be worth trying to implement coping strategies and methods for people with autism and see if it helps your life. the end result of getting diagnosed would effectively be "here's how to cope with autism" so you can just skip the diagnosis part and try the coping part. if it doesn't help, no harm in trying.

Does it affect you negatively in your life? The point of a clinical diagnosis is so that you can get further help to address issues. If it doesn't affect you negatively, then you won't get a clinical diagnosis. Autistic is just a label for a very diverse condition. You are probably atypical neurologically in some respect, just accept it as part of you.

Whether or not they have an autistic neurotype is something they deserve to know whether they want help with it or not.

What is the point?

I recognize myself in lots of things that are described by some people having autism and out of curiosity I ran an online test once that basically said that I might but it was also clearly not definitive. But more often than not I didn't really know where to put the cursor between totally agree and totally disagree so I answered some of them very randomly.

From what I understand if you are not neurotypical there is very little that can be done and I don't think it should be considered a disease to be slightly different. I honestly prefer not to know as I don't think it would help me in my struggles regardless of the result and if I was I am not sure I would want to be labelled as such. YMMV of course.


This should read “autism CAN make travel a challenge”. Mine doesn’t, travel isn’t hard for me, frankly I see a lot of people getting more stressed and anxious about travel then I do. the blanket statements people make about these things like autism, adhd, etc are just getting tired and frankly need to stop.

I get what you mean, but I also hate that everything needs to have 100 disclaimers, specifiers, and caveats as to not have someone correcting you.

Autism is a complicated topic, as it has various forms and severity (the whole spectrum thing), some people can live with it better than others, so as a reader of this article, I assume that the statement doesn't cover every. single. person. on Earth with autism. Yeah, I got that, you don't need to put that in the title, it's self evident if you take 2 seconds to think about it.

"autism CAN make travel a challenge"? Can? Everything can make travel a challenge, so it's now kind of a pointless title, the important part if it does make it challenge? What kind of travel, all kinds, or only longer ones? Or is it about going abroad? Is it about food? Then why not put all that in the title, too?


This also grinds my gears. Amazing how many people can see a story about someone having a sandwich for lunch and thinking "Um actually I didn't have a sandwich for lunch and can't possibly imagine someone having experiences different to my own so you need to edit this."

Even just "autism makes MY travel a challenge" would be better than the current emphatic generalisation.

Or even "MY autism makes travel a challenge". There's a spectrum of autistic traits and not all of them affect travel.

And a lot of people without autism (or that it hasn't been diagnosed) who have issues travelling and managing unexpected stuff.

Or just "when being autistic makes travel a challenge"

I have seen more and more of this stuff lately and just try to keep my mouth shut. "autistic people don't like exercise the way neurotypical folks do". I'm just like... ???

I love when the people standing up for me have no fucking clue what my life is like or the struggles I face.

It great really annoying when they tell me what my problems are, because I’m clearly a less reliable source than some article on a website.


The one that grinds my gears is the one on TikTok where a girl took an autism assessment and got asked what 2 and 7 have in common.

They are both prime numbers?

You may be autistic, but also you might not. You definetely have something going on! :)

By the time you embed all of the potential caveats, you've written the article.

Map/Territory, Time/Place, Context, pick your explanation for why you should stop picking every conceivable nit.


I got caught up in this myself, I was recently(ish) diagnosed with ADHD and I was struggling with some preconceived notions of what it would be like after seeing a ton of articles, social media posts, etc that seemed to all make ADHD out to be this singular experience that I don't match up with. (Even worse I had preconceived notions of what the medication would be like, which it has been great but it wasn't quite like I was lead to believe)

I have parts of it, and that's part of why I did not even think to get diagnosed until I was in my thirties. It wasn't until I said something to my doctor casually that the conversation came up.

I think these general terms can discourage people from getting help because their experience doesn't line up with headlines like that that imply if you don't have this experience you don't have it.


Yeah, diagnosis like ADHD and autism have been invented just to make sense of the various ways our brains can be different. There's a high rate of comorbidity between the two, and various other diagnosis, which means they are not really separate "diseases", but just collections of symptoms caused by some differences in brain structure.

Personally I have traits commonly linked to both ADHD and autism. I'm often afraid of change and desire structure, yet somehow I love traveling. I guess that my extreme boredom with repetitive daily life just overcomes the fear, plus some of my deep interests require travel.


On the flipside, traveling alone outside of my state (or more to the point, where I don't have 'control' over my own travel) makes me freeze with terror. Going through an airport? It's a cacophony of confusion, anxiety, and fear rolled into one. Will I get to the airport on time? Will the lines cause me to miss my flight? Am I going to the correct gate? Did I need to take the tram to get to the satellite gate? What if it's late? What if my flight is late? What if we're diverted? Where do I go into <airport I've never visited> to get a rental? How will I get the rental back and where do I go? What if the rental wasn't booked correctly? How will I get to the hotel? What time do I need to leave?

I could go on... But none of those concerns pop up if I'm traveling with someone else.

"Autism is <blank>" is always going to be incorrect. Everyone is different. I always appreciate those that recognize the differences and everyone's unique experiences [with Autism].


The best, most plausible-seeming description I've encountered is that autism is a collection of imperfectly correlated traits. One may be able to make "often" and "usually" and "sometimes" statements, but probably not "always"/"never" statements.

Is there a better description out there that manages to be true to reality?


It’s phrased that way to resonate with the intended target audience, people who identify with the premise.

A book of outrage would probably phrase it similarly if it wanted to target you instead.

It’s such a ubiquitous, pervasive tactic, it’s easy to overlook it when it’s happening.


How would you feel if you didn’t have breakfast today?

How much coffee have I consumed instead?

How much have you?

3 cups since then

Awesome



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