to feel minimised when I'm told 'everyone feels like that'?

[WestieMamma]

Because it winds me up something chronic. I have ASD and have endless meetings with various professionals surrounding the support I need. Have another one today which I dreading. I explain how the ASD affects me and give an example to illustrate and am almost always met with the 'everyone feels like that'. It makes me feel like a complete failure and utterly useless. How do I explain to people who should know better that this is wrong and incredibly insulting?

AGlassHalfEmptyNoLonger good luck today.

Hope you enjoy your friends wedding and it's not too stressful.

Ok, reverse the 'empathy' and 'sympathy' in my post.
They should be sympathising not empathising.

You cannot empathise with something you don't understand.

Randall and AGlass - I don't have ASD, but you've described exactly how I feel when I go to big social functions. Also, my father has Aspergers so I have a better idea than most.

I don't think it helps Westie to be angry with people for coming out with this response. I think their intentions are good. It may not be the response you want, but it might help to understand why people say it.

Westie, good luck getting the support you need and no- one should have an important meeting sprung on them, particularly while they've got building work going on.

YANBU

It's minimising the problem so they don't have to deal with it - though they may believe they are being reassuring. It can also be because they don't get how much more it is affecting you or they just don't listen.

I've had it happen to me and delayed diagnoses and made me doubt myself.

MN as a whole seems to be determined to not let me forget about my suspicions that I may have an ASD. That wedding scenario is exactly how I'd react in that circumstance & has made me feel antsy just thinking about it!

OP, I was trying to explain to a friend the other day what I struggle with when socialising & got the breezy 'but everyone feels like that' response. I wanted to scream at her that she might feel uncomfortable sometimes but she clearly doesn't get the crippling anxiety or the migraine afterwards when it's all been too much. Often just the thought of a social event organised by someone else is enough to induce a migraine/meltdown before I even leave the house so I'm regularly cancelling things. People don't realise it's such a big deal for me because I only go to things that I help to run so I'm in control & feel relatively comfortable.

You're right, it's minimising & downright patronising. I spent all day every day with the curtains shut when we were having our garden down in case they, shock, horror, waved at me or something! It's awful having your safe space invaded.

Do make sure you have an advocate at all meetings in future & if they turn up without notice don't answer the door. I never do! just say it's not a convenient time & refuse to let them in. It might be worth asking to have it put on your file that you need a set amount of warning before any meeting so you can complain if they put you on the spot again.

I suppose a big part of my stress over this is that these are the same social workers who fought through every court in the land to get out of providing any support because as far as they were concerned I was fine. Who then tried to get my baby taken away because they felt I was so impaired within a week of the Court of Appeal judge telling them to stop arsing about and to provide the support I needed. They are not trustworthy.

I have struggled for years with this.with family ,friends and professionals.
It most certainly minimises the problems someone with asd are having ,
I get 'oh my sons a fussy eater too' when I tell them my son has a very limited diet.( Very limited)
'Oh my son is shy too' when I say he has selective mutism ,
My son isn't shy .he just can't talk ,he won't talk to you when he gets to know you .he can't talk .
'Oh my son used to do that , he grew out of it ' at anything I say about my sons difficulties..
Well my son won't grow out of it ,
His life is bloody hard as a young man with extreme anxiety about almost everything,
And when people try to empathise with his problems ,by comparing his to theirs ,it frustrates and angers me .

YANBU at all. Friends who have adopted children with significant behavioural issues to do with attachment difficulties or early trauma report being very frustrated that people continually tell them 'Oh, ALL four year olds do x' or 'But that's NORMAL!'

I do feel though this is about professionals who should be trained to understand. Autism is a group of individuals and in non professional setting there will be some that would like to be able to say "I have a bad day" etc and have the same reaction as anyone else. The last thing they would want or need is sympathy. I would hate for people to be afraid of saying the wrong so not speaking at all. Social workers are involved for need and to try to dismissive is not professional. Can you speak to the unit for help in writing a letter of complaint.

YANBU

I don't have autism (probably), but I do have OCD and I find it very frustrating to try to explain why that means I can't do something as people start explaining about their 'OCD'. So many people seem to think liking matching underwear means that they have (or, even more annoyingly, 'are') OCD.

Obviously, if they actually have OCD, that is different, but then they wouldn't behave like this.

I do not like people who do this.

You can start by questioning their understanding of ASD when they are flippant because if everyone was like this you would not have a diagnosis and a more qualified person is needed if they can not see this and they should speak to their line manager for a replacement.

I have autism too and I find that attitude very tiresome. I have started bringing photocopies of sections from books, research papers etc which put my difficulties into context. E.g. examples of my anxiety and how it leads to suicidal thoughts backed up by statistics and an explanation of how it's directly linked to the triad of impairments. When I find a passage in a book that describes some of the difficulties I have and links it to ASD, I keep a copy in a file. I think the whole issue is made more difficult by people who self diagnose but don't have the same degree of difficulty and live quite functional lives, and wouldn't reach the threshold of diagnosis. Then other professionals think you are as capable as that, whereas with a full diagnosis you probably have a much higher level of difficulty.

We don't get a lot of support from social services though. I've also had problems with them questioning my parenting due to their poor understanding of ASD and so I'd rather do without the tiny amount of support they do offer, for a quieter and simpler life.

Why shouldn't she be angry?
Why should she have to have patience and understanding?
Why shouldn't the NT person be the one to show some understanding?

It really pisses me off to hear that. 'Oh, people mean well, they just don't understand, it's not their fault.'

There's nothing wrong at all with not understanding something. The problem is when people presume to understand something they know nothing about.

It's always the person with the disability/illness who has to show understanding and patience. It shouldn't be that way. Why is it such an instinctive reaction to completely dismiss something you don't understand?

I totally get that it's the human instinct to try and relate to people but surely it's not difficult to realise when you can't. So for example if someone was telling me about their crippling IBS I could say either:- 'gosh, I get diarrhoea quite often it's just horrible, I can't imagine what full blown IBS must be like.' Or I could say 'I know exactly how you feel, too much cheese gives me the shits too'.

Big, big difference.

Context and degree are everything.

If someone with crippling IBS had only said "I had the trots last night" to a friend, then it's quite fair for them to say " I know how you feel, etc".

If they said, " I was up half the night with my IBS" then the "gosh, I get diarrhoea, etc " response would be more appropriate.

Likewise, saying you find strangers in your house and building noise unbearable does not necessarily warrant anything more than the " I know how you feel / everyone feels like that" response. Saying you can' t leave the house through fear of a social interaction is a indication that this persons responses are towards the higher end of the spectrum are requires a different response.

And anyway, what kind of response/ action would you expect if you said you find strangers and building noise hard?

I agree, but the context in this scenario is that she was talking to professionals not some stranger on the street.

Indeed, but she did not describe higher end of the spectrum/ autistic behaviour to the professional. If she had, she might have had a different response. I appreciate that she couldn't think clearly because she was in a stressful situation, but that doesn't make the SW's response to a description of perfectly normal behaviour unprofessional.

I would expect them to have at least a basic understanding of the condition they are dealing with with, so that they would be aware of what could be a major problem. I would expect them to have some understanding of the difficulties people with autism have communicating and to have the skills and experience to know what and how to ask the right questions. If they can't do that, I would expect them to use the real experts who are more than happy to advise rather than actively blocking their involvment. Once they have some sort of understanding I would expect them to have strategies up their sleeve and to work with me to help me find a way to cope with the situation. Afterall that's what they were here for.

Maybe you should write things down to show the social worker or to remind you what to tell them. They shouldn't be so dismissive. Everyone would be annoyed by builders but they should understand it would be worse for you. You have explained really clearly here how it affects you so I think that would help them to understand.

Westie you communicate very well in written form, you need to put all this in a letter.

Where you are Westie, less than 1% of the population have any autism spectrum related disabilities. It may be worth seeking some support here. It is a small population so it may simply be that the support and knowledge is not there. Coupled with the Scandi way of "doing it myself" and not relying on any help from authorities and social workers. It is a great stigma attached to this. Commonly one stays away because it is known to not do you any good. Swooping in to take the kids is not uncommon, if you admit that you need any kind of help and support. The SS differs greatly from in the UK.

I dont know about SE, but in NO autism is very much regarded something you "grow out of" and mostly affects kids.

I'm afraid we'll have to agree to disagree there, Bali.

Westie, you have summed it up perfectly in that post.

I wonder whether some of this is about a semantic misunderstanding, OP. When you say your ASD is worse in the mornings, I'm not sure professionals will know what to do with this. ASD is seen as a relatively stable set of characteristics, not normally viewed as something which fluctuates over the short term. But saying, for example, that the anxiety (or thoughts about an obsession, or whatever) associated with your ASD is worse in the morning might get a better response?

YANBU. People can be so ignorant about other people's experiences, and often trivialise them. E.g. "Oh so you're a migraine sufferer? Everyone gets headaches sometimes!"

ClockWatchingLady it's my cognitive/executive function which is worse in the mornings, which I thought was the primary characteristic of ASD. Everything is much more confusing and I can't quite get my brain in gear. It's like a part of my brain isn't up and running yet so I can't quite get myself together. Sort of like that fog people have in the moments when they first wake except it can take hours to clear. Where I am, not UK, autistic people with this particular problem can get weighted blankets on prescription because the extra weight while sleeping can improve cognitive function on waking. I have one and things are much better than they used to be, but nowhere near normal.

The social workers know all this already. I can't properly explain it to them but it was all included in the ADL which the autism unit did and which they were given a copy of.