How do we get NTs to take sensory sensitivity seriously?

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Three times now, I've either reached out or been asked directly about my needs. Three times, people have acted as if they're listening then promised the opposite. Three times, I've felt afraid to be 'picky'.

The thing is, my sensory needs mean I am in physical pain when they are not met.

Once was at football. I reached out because they said 'if anyone has concerns about the lights, tell us'. They didn't do anything about it. So I'm scared to go back because light sensitivity feels like my eyes are being stabbed.

Another time, the same thing but with a museum. They asked for feedback. A lot of NTs have asked for brighter lights and I asked for dimmer because of actual needs (as mentioned above) not because of a preference in terms of what looks pretty. They're going with bright lights.

Another time is a retreat I'm going on. They said they'd be ok with people having dietary needs and catering to them. I need to have bland food or I feel sick. I gave them a list of foods I like and they said 'you'd be bored having that, try this'. But if I said I had an ethical concern about animals, nothing to do with my health, they'd put me onto a vegan diet no problem. I need bland food or I'm sick or I can't swallow it and go hungry. I was on a retreat once where all they served was rich food and I ended up being almost literally starving by the end of it.

I feel like NTs don't understand what is a need rather than a fussiness on our parts. How do we get them to understand that? Especially larger organisations who are interested in reaching out to the customer but ultimately interested in profit?

I can't be the only autistic person out there running into frustration on this stuff.

Most people only seem to care about the social elements.

What if you told people your diet needs are "medically necessary"?
I think they ought to respect your request anyway, but that phrase usually seems to be taken more seriously.

For the lighting situations, do sunglasses do an acceptable job for you? Sorry to say, but usually it's majority rule and more often than not they won't be willing to adjust for one person.

I have coordinated meals for a retreat center before, and part of the issue could be other people who had fake "needs" who came before you. Like we had a guy who "couldn't eat gluten"...unless it was in a cookie. So I made 2 separate meals, one for 60 people and the other just for him, being careful not to cross-contaminate the food, only to find out he was not actually allergic or intolerant, just thought avoiding gluten was healthy.

After that, we made sure to delve further into people's dietary needs, and there were times we had to ask them to bring their own food to supplement what we provided, if their diet was too strict or an allergy too severe.

But I could see some people assuming it's just pickiness like that "no gluten guy" - and if they are too lazy to check, just going with that and assuming you can adapt.

In the future, I would say "my stomach is very sensitive and I am on a strict diet and can only eat _________. If I eat other things, I get violently ill. Do I need to bring my own food? If so, where can I store it and heat it at meal times?" Keep the list of what you can eat simple so they don't mess it up...better to eat the same meal every day than have nothing acceptable at all. But that should give them the info they need to tell you if they can provide your food. Even then, I would bring some non-perishable items you can eat just in case. My go-to foods are crackers and bananas.

My glasses don't work well enough for the flashing lights some places have. I have to leave. And I have the darkest ones the optician offers.

Yes, people with false needs are really annoying. They ruin it for those of us who are genuine.

I didn't say it was a medical need but I did say that I almost starved at a past retreat because the food I was given was too rich and I couldn't eat it. And I did explain rich food makes me feel sick.

What is really annoying is that they're doing this healthy stuff. So for eg I can't have my chicken because meat is unhealthy (this isn't true. Red meat is unhealthy. White meat is fine unless someone has an ethical objection to it) and it's a dry retreat (it's 18+ in the UK so everyone is legally allowed to drink but they're keeping it dry for health reasons). So they are catering to the general healthy eating but not to mine.

I made a simple list. They acted like it was all ok except the chicken. Then they ignored it because 'you might get bored eating that'. I don't get bored with food.

Are bananas non perishable? I'm tempted to ignore the healthy eating thing and just bring some pot pastas. As long as I'm allowed in the kitchen to make them.

Like I said - I can't be the only autistic or epileptic person who's going to be hurt by the lighting in a big museum or in the most popular football stadium in the country. I think medical needs should come first so if the majority aren't physically hurt by dim lighting (I can think of situations where minorities might be, for eg on staircases if someone has mobility issues but there normal lighting should suffice) then people who are put in physical pain should come before 'ooh pretty lights'.

It's a bit of a swings and roundabouts situation. What we need is to collectively organise in person as autistic people on the times when we do go out. Let them see us together. And organise things around campaigns. They only see things in terms of collective groups. But a lot of autistic people are driven indoors by this stuff. I only go to the theatre when it's billed as sensory friendly. This is probably the reason why autistic kids are more catered to than autistic adults - their parents are doing a lot of the organising.

I'm going to have to bring 4 days worth of food on a long train ride. In future, I'm going to make sure my retreats are closer to home to avoid that.

What really gets me is that the places I go to or at least the ones I'm writing about are obsessed with diversity and inclusion. Except when it comes to realising that when it comes to neurodivergent people, our needs might actually be different to the mainstream. They just use those words as buzz words.

This specific retreat is OK with me having sauceless pasta, plain rice and vegetables. I just got the email back They were just double checking.

So basically only go places where they place high value on diversity and inclusion.

Why don’t they just keep the pasta/rice and sauces separate?

They don’t have to mix everything.

I don’t like spicy foods...but cream sauce type things are okay with me. Like mushroom sauce.

I like foods together more than separate. But it’s not hard to cater to people who want separate.

Exactly my point, Kraftie.

Imo it should kind of be majority rules but not 100%.

Make it so that it's health needs first, then ethics and then preference. Make it so health needs = who will be unwell if we do this and ethics = who is actually making an ethical choice rather than just 'I couldn't care less'.

My first retreat was so bad I was starving at the end of it. Not sure if literally but literally enough for me to say it as an aspie. My ribs hurt, I couldn't concentrate, I had to sleep all day, I was hallucinating. That's the cost of not taking it seriously. The alternative would have been to be sick, which was what I tried the night before I felt like that - stomaching the food but I ended up puking it back up again

I did meet my best friend and (no offence, but you always value real life most so you won't take offence) favourite American on that course though. She found out what was going on and gave me her chocolate bar after asking if I could have plain milk chocolate. Probably helped me be a bit better after a long time not eating.

That was nice of her.

Why can't they provide plain chocolate bars, anyway?

I like plain chocolate bars myself. Cadbury's is really cool.

That place didn't provide any snacks.

All I could eat was the breakfasts. Nobody noticed I wasn't eating so everyone rushed for them, I was left with whatever was left. Everything else was in a pot of everything, one meat and one vegetarian. Also, everyone had to cook. I'm not very good at cooking and someone gossiped about it.

Next time I go there, if I go again, I'm taking a load of snacks. A multipack. For me and for whoever else is that hungry.

Even at home, we do that added sauce thing. I didn't think about it because we have plain food. But me and my stepdad are ok about the process needed to make honey. My mum isn't. So we put it on after we have served the potatoes, not hard.

I find the worst places are the poncy ones. I'm quite a reverse snob about food but it's because posh food is very rich and sickly to me. People look down on you if you can't eat the latest fancy foods.

Anyway this particular retreat seems to be doing its job properly

I'm NT in the sense that I probably don't have autism. However, I do experience sensory sensitivities and have visual processing issues. So in that respect, I'm not completely typical per say. I am often referred to as picky or particular.

My dad used to be a picky eater, and my mum seems to have better hearing than most. I find it amusing that both of them are so surprised at my hypersensitive nature. Over sensitivity does seem to run in my family somewhat, I'm occasionally asked for input on potential reasons why my cousin doesn't like something if we both dislike the same object/food etc.

However, my sister is actually the opposite when it comes to taste buds. I like plain/bland food, and she hates it. So when we eat as a family, she'll cover almost anything in intense tasting sauces. I think she might be under-sensitive to taste.

Whenever I go somewhere, I make sure to check menus beforehand if possible. If I go on a day trip somewhere, I usually pack a back-up meal just in case. Eating at a restaurant or with family can be overwhelming at times. Fortunately, my parents are fairly understanding these days. However, my sister is less so.

Although she is well-intentioned, her advice isn't great. She tends to believe that I just need to experience things more to strengthen my resilience to them.

"Have you ever tried not getting overwhelmed?"

Oh, if it were only that easy.

It's always annoying when people ask if something is bothering others, and you say yes but they continue doing it. That happens to me with aerosols, I tell them that I'm asthmatic and that it could cause me to have an attack. Yet they spray it anyway. I think that some people don't fully realise how serious an attack has the potential to be. One time I did indeed have one due to aerosols. Good thing I was able to recover with my inhaler, but it did take a while. I definitely appreciate whenever someone listens to me and doesn't spray, or warns me so I can leave first.

One of the stupidest comments I've had was "Yeah, but you're not like overweight or something, so it's not like you have serious breathing issues".

*Facepalm* Would you like to say that to my doctor? My lung capacity is improving, but I can't go off my medication just yet.

I wouldn't want the outside world to change for my benefit at everyone else's expense. Frankly, although my hearing and sense of smell are more sensitive than those of almost anybody I've ever met, I am convinced that it's possible to overcome hypersensitivity by a protracted effort of the will, autism or no. It's so much easier to just blame everybody else, though. The only changes people need to make are to be more courteous, polite and respectful, ironically difficult in a world where egoism is the norm.

... In the world I grew up and live in, it's the NTs who complains a lot especially when it comes to temperatures -- yet usually done nothing about it and had to bare with what they got.
Yes, even the things that could make them sick/discomfortable and unpunctual/disorganized. More so if it's the only means they could afford having.

So I grew up having to learn how to ground myself and have the external sensory issues be the least of my worries. I cannot afford to have any external sensory intolerances, no matter how sensitized and vulnerably affected I'm to the environment.
If I have to keep up since there are little room for management, then I had to find a way to heighten my thresholds along with my tolerances.



Most retreats I got were... Hmm, almost none of it could fit to most of my preferences.
Not even the very one disability-related I've been into -- in which I had attended nearly unplanned without any 'warnings' or anything to say about what kind of place it is or what food's available, etc. Came out with super limited choice of food, the weather was crap, the cold was unbearable... I went home sick and in pain, and have to recover for a week from it.
But I enjoyed the company and discussions very much... I wouldn't mind going again in my case -- as long as the company is enjoyable enough.

The retreat is more or less sounds a bit luxurious from my point of view. In fact, the idea of any events with more detailed schedules and what haves is luxurious. More so with the heads up and possible accommodations -- I hadn't had any of those, since people here tend to exercise their own self-services.
Heck there are events that guests themselves are doing the crowd management, hosting and accommodating themselves if they are capable of swaying that amount of people well. Some are really good, some had gone badly.
And the idea of a public sensory friendly place is but a dream.



Basically; I got nothing except possibly adjust and self accommodate. Unless you can change the venue's space of a culture, even maintain a temporary one, then I got nothing.

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Easy. Don't NTs have this wonderful skill called empathy where they are able to imagine themselves in someone else's shoes and understand other people's state of mind (something autistics "lack")?