Why do people with autism not get believed when they...

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Why do people with autism (or really any kind of disability) not get believed when they try to voice what their needs are?

What would you advise a person with autism, schizophrenia, etc. to do when they find themselves in this kind of situation?

Because in a lot of cases, autistic needs and disabled needs are marginalized and minimized by society & individuals. Autistic people are lesser in the minds of some people, and for other people, due to a misunderstanding of a specific autistic persons needs, on behalf of say, an NT, they don't really 'believe' or invest in an autistic persons true needs.

For example, someone might be deemed as socially competent by an NT, based on a small window of socialising, despite the many problems an autistic faces, socially. And so on.

This is a very sad but often true situation...it seems almost impossible unless they have someone NT like
identified as their caregiver.. which is or can be just another form of victimization .

If they think the person appears to be "like everyone else" they're less likely to believe that person has different needs. People seem to think, "If I can do it without any accommodations, then so can you."

I experience this with my Thalassemia Minor anemia as well. Being tired affects me more severely and some people have accused me of exaggerating and being lazy.

There's also a thing I call, "How can you complain when there are real people with real problems?" I.e., "I read a story in Readers' Digest about this quadriplegic war orphan who had cancer, but still had to work 16 hours every day and never complained. See? Now your problems don't seem so bad, do they?" I do think it's important to keep perspective, but that doesn't mean my problems don't still affect me.

It is frustrating. I saw a T-shirt on the internet that said "Don't touch me - I'm autistic" and I thought YES!! and ordered the shirt. I am touch-averse, and it's always awkward when people want to shake hands or hug and I don't. I thought I could wear that shirt to occasions where hand-shaking and hugs were likely. Twice now, I did just that, and even looking directly at the wording on the shirt, people TOTALLY DISREGARDED IT, and when I didn't hold out my hand, put their hands on my arm or shoulder. One lady even hugged me anyway.

How much more clear can you be? I'm wearing a sign that says Don't Touch Me and gives the reason why.

I think most people believe us, but they think we should adapt easily and be able to tolerate inconvenience when it happens. The morons I’ve met who act that way seem to think ASD is something we can stop by using CBT techniques, or that we secretly want to “get better” so we can be more like them. We’re supposed to just take one for the team because it’s less of an inconvenience for them.

Their needs come first, of course.

I think also that it can be difficult for someone to imagine what it's like to be another person and what struggles they might have, if they have never experienced anything similar. I'm not excusing it, because they could still listen and believe you, but it may be beyond their ability to imagine.

I don't know what you can do about it, but it might help to make your requests very specific, so that even if they don't believe you or understand you they can at least follow directions. For instance, you could say that you need to have the blinds closed in the afternoon because they afternoon sun is too bright. Or, if it's possible, leave the situation that is causing discomfort, at least in the moment.

Unfortunately, those of us with disabilities often have to make allowances for other people instead of the other way around.

Oh this pisses me right off. When I say what I need I MEAN IT. I'm not being fussy or finicky, I need it as I'm at the end of my tether.

What I have learned however is this:

When I say I need something, it is because I've reached the end of my limit and I need it RIGHT NOW. But NTs don't believe me because I didn't mention it until then.

I've learned that if I whine and moan about something for a little while beforehand, and kind of prepare NTs for my needs, they understand it better. They think if I say something only once, I don't mean it. They think the first complaint is level 0. Whereas the first complaint for me is level 10, help needed urgently!

Example:

1. Oh it's a bit hot in here.
2. Oh gosh I'm getting far too hot *fanning myself*
3. I can't stand this heat for much longer.
4. Can you open the window, I really feel like I'm going to faint.
5. I feel really awful now, far too hot. Please open that window or I might throw up.

By no. 5 it has dawned on them that I'm suffering and not just suddenly saying something out of the blue.

^I understand what you mean.

The example of the heat is explanatory.

It happens to me too, and I have a very large expressive vocabulary.

But apparently it's like we speak two different languages in my country between NT and ND.

This makes me suffer.

<>

Let's see: according to the points you describe to an NT it would seem that you were complaining gradually.

*They instead use two things that we don't use:

1) Non-verbal language
2) Communication occurs with person and person and person.

So they make themselves, so to speak, a path to follow, while we don't do it.

Let's go step by step.

Afterwards they go straight to the point: it's too hot I'm sick.

The difference is substantial: if you express something gradually like you do or like I would do, they won't listen to you.


You can try to involve more people first in order to make them aware of your psychological and physical state.

Then, in a very direct manner, get straight to the explanation:-"It's hot here that makes me feel bad, I'm fainting from the heat, they'll feel involved"

They will understand (it makes a difference)

Look at their faces and use coherent expressions: if you do these two things you will definitely get them wrong. if you don't do them it's non-functional communication.

*Seek psychological alliances.

You will find it.

Excuse me because you will surely be more skilled than me.

I perceive it from how you write, because you are decidedly clear in your writing.


Remember: if they understand it is only because we are able to explain ourselves very well according to THEIR communication standards.

However, we are not effective in that.


I sometimes talk. If at a certain point I notice a lack of interest in my words I stop and keep quiet.

Because I think: I'm just wasting energy.

They immediately ask me if I was offended.

No I answer.
It's just that it's stressful to talk without being listened to.

So there's no point in talking at all.

I also kept the dialogue to a minimum, look.

I write a lot here.

Yesterday I traveled for a couple of hours with two passengers to whom I didn't say a word.

Maybe only to the girl because to take her place I got up and helped her.

I think she also liked me, but the dialogue ended there, I wanted to travel without interactional stress.

But maybe she too: well, I wouldn't have understood this.

On the previous flight a passenger talked to me for 2 whole hours.

I was so stressed.

In the case of communication, if they don't understand the words, use non-verbal language. 90% of communication is non-verbal.

I write this because very often we appear as alien or impassive figures.

Or if we are stressed, we use a lot of words to express a concept.

We need to take a deep breath and speak in a minimalist way.

It will avoid so many attacks of social nausea look...

I had a conversation with someone about this sort of thing not so long ago. I've had a lot going on lately and it has taken a toll on me. I try to voice my needs and it seems to me as though I am not being heard. The comment I got while venting my annoyances was something along the lines of 'because you seem okay so it's hard to imagine you aren't'. If I had my arm in a cast it would be obvious. My issues are not so easily visible though...until I shut down that is. But this space...the one where I need space/support/whatever to prevent the shutting down? That's not obvious to all because to them, I look fine.

I am going to take the subject line as an invitation to fill in the blank b/c I have been thinking about this a lot recently.

(1) Why do people with autism not get believed when they... tell doctors and nurses what they suspect is going on (and are correct) and it is dismissed to the detriment of their health (or children's)?

(2) Why do people with autism not get believed when they... have sensed something that's concerning?

Theories?
(1) People will revert to delusion and contradiction to protect their pride and status.

(2) People don't want to be bothered by a small possibility or "minor" issue (they do not sense).

I suggest calling it out.
(1) That's a (good) possibility, let's pursue (consider) both options.
(2) This may seem minor, but I believe it's worth checking out.

I would love, love, love to be able to call it out more directly... "Is there a particular reason why [input was dismissed]?" Could I do that? Hard to face the non-truth that would likely come back... but at least they might think twice.

They see it weakness and attention seeking. This is especially true when you do not have a physical disability.

I have first hand experience with this. The difference in how I have been treated since I aquired physical disabilities is remarkable.