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?

It's not meant to be insulting. People say this when they are trying to make you realise that a particular thing - feeling depressed for example - is something that everyone feels from time to time. The aim is usually to make you realise that a) you are not alone, b) it's nothing to be ashamed of and talking to others may give you some coping tips and c) it may just be part of the human condition and something you need to try to accept rather than seek treatment for.

I doubt very much that 'everyone feels like that'. My son has ASD and things that are merely awkward or unpleasant for me can be excruciating for him.

I don't know how you can get them to be more supportive, but hopefully somebody will be along shortly with some ideas.

Its an empathetic gesture.

Can you give the illustrative example you last gave which was met with this response?

It's not empathic - it's sympathetic and it's not helpful.

YANBU Westie, it's unhelpful at best and invalidating at worst. Who cares if everyone feels like that? That statement doesn't help you. If you're left feeling useless or like a failure then you're clearly struggling and need more support, not sympathy.

My uncle who mentors adults with various disabilities including ASD always emphasises to them they need to differentiate their needs. It can be hard to tell someone of extremes when they are your normal. Maybe writing them down or an advocate would help.

No it's minimising and it's coming from a lack of understanding.

I get it about my son 'Ahh but that's normal'... It prevents (or protects!) them from having to recognise need which they would then need to support me to meet...

It's a frankly awful thing to do and is not empathetic at all... Anyone who believes that needs to go back to Karl Rogers as it understanding another from their position wholly without interference from own opinion....

It depends on the examples. Balisatpus is right: many things are indeed common. The frequency and intensity may vary though.

Feeling minimised when you hear something (even when accurate) that you don't like is also very common. But I think it's quite rare for people recognise the roots of the feeling as you have done (many just get stroppy or PA).

Don't try and tell people you find it incredibly insulting, even if you do. It'll only make things worse and lead to confrontation.

Would a phrase along the lines of 'yes the features of ASD are commonly misunderstood and minimised. I can recommend some reading as my explanation isn't getting through'

Actually, reading back, the last bit I suggested is too PA. Try 'I can recommend some reading if you want a better and fuller explanation'

Example:

On Friday the social worker from adult services was here. She wanted to know how things have been recently. We've had builders replacing the external wall for the past few weeks (deathwatch beetle squatters). I said I was finding it hard because of the constant hammering and strangers all over the place. I was told this was normal, that most people would feel the same. I know people would be bothered by it but no where near the same extent. I the whole time in such a state that I,ve either been pacing round the kitchen or hiding under my douvet when the nailgun was going. The noise bothers me so much that I cannot function at all beyond counting down till their lunch/tea break. I can't leave the house while they're out there because I'm too scared of having to interact with them. So I've had to cancel stuff because I can't escape unseen.

It really does depend on the degree. In your example finding the hammering and strangers hard to the point where you can't function properly IS normal. I don't have ASD but I would find it excruciating and would have to leave the house. However, what isn't 'normal' is not being able to leave the house because you're too scared to interact with them.

If you'd just told me the first part I would have said everyone feels like that - because it's true- but if you'd told me the second part I would have tried to suggest talking to your doctor, etc, if you hadn't already told me your diagnosis.

Westie did you tell this social worker the second part as the first part about not liking builders in the house would be common the second part is the extremes that you feel and no they are not common. If you have meetings frequently then a diary may help with inserts like you have just posted written down. The social worker should no better but they attend meeting with budgets in mind because the pressure they are under and the best outcome for the meeting from her point is everything is ok.

Sorry know not no.

Sometimes ppl say that to offer some empathy, to show that it's ok to feel like that
But often it is meant to minimise or dismiss unfortunately. So YA (probably, sometimes) NBU.

I told her I couldn't cope with strangers around but didn't go into further detail. I'm not good at communicating verbally when put on the spot. ,They know this and the autism unit occupational therapist wants to attend so she can speak for me and explain. Social services don't want them involved (because they don't let them take advantage of me). This meeting was to decide the type of support needed for the next 6 months. I had no notice, they just turned up on the doorstep to do it. So straight away I was off balance and couldn't think straight.

I remember being told this by a Dr (in a different context mind you) and it WAS extremely frustrating and upsetting. It was also the way she said it....dissmissively. Not only that but it was inaccurate. I know for a fact that loads of people didn't have the medical problem that I had because the staff at the hospital told me it was very unusual. I feel for you op.

Westie It's common for those on the spectrum not to be able to answer questions in real time, print this thread off for this afternoon and use it. Dh has his nurse coming over today, so last night we wrote down how the week had gone and how he was feeling. This means that we have everything done in our time, in as relaxed a manner as possible and we can be clear. Oh, and they aren't allowed to just turn up. They have to book an appointment. Do you have a CPN? This can be written into your careplan.

I hear it most when I try to explain to people how my autism is worse in the mornings. This is very common in autism. Cognitive function is seriously impaired at one end of the day and gradually improves/worsens throughout the day. It's so upsetting to have my disability at its worst dismissed because everyone needs a while to get going in the morning.

i get that! 'oh, we're all somewhere on the spectrum.'

[to 'them'] are you? well. tell me the last time that walking out of your house and down the street made you feel like you were being repeatedly, endlessly, shredded by sharp knives. go on then. when was that?
no diagnosis? can't be asd .can you empathise? can't be asd, because i've read an A4 fact sheet on it...and as one self-proclaimed 'professional' said on here the other day, 'if you have enough self awareness to think you're autistic, you're almost certainly not'. oh no? a blind man on a galloping horse couldn't miss it, if he knew anything about asd, which sadly many of 'them' don't.

rant over.

sounds like you've got a lot of people on board to try to help, westiemamma. make a booklet of asd info from the internet, highlight bits relevant to you, and take it with you to show them. that's such a fine idea i'm going to do it too. 'psychology today' had something in it recently about autism in the counselling situation, which helped my counsellor to 'believe'.

the thing is, 'they' are social animals. they want us all to be the same. they don't like anything or anyone to be different.

good luck.

My son has ASD, if there was building work done like that he would have to wear ear defenders to block out the noise. He is over sensitive to noise.

Have the team used the star approach

complexneeds.org.uk/modules/Module-2.4-Assessment-monitoring-and-evaluation/All/downloads/m08p090c/the_star_approach.pdf

No, YANBU at all.
It's minimising, dismissive and ignorant. Especially if it's coming from a so-called expert.

I can't imagine how difficult certain things must be for you because I don't have ASD. I would hate that kind of noise and intrusion, so would most people, but just how stupid does a 'professional' need to be not to realise that someone with ASD would be finding extreme situations like that harder than someone who is NT?

As nomoretether said earlier, it's sympathising not empathising. Empathising would be saying 'I'd absolutely hate that too so I can't imagine how it must be for you' or just a simple 'that must be really difficult for you'.

Saying it's the same for everyone is like walking up to someone who's mum has died and telling them that you understand completely because your goldfish died last week.

If you genuinely believe that people with ASD and people without it have the same reactions to things then I suggest you either educate yourself or politely shut up. If you are a 'professional' and think like that then I'd suggest some serious training is long over-due.

What I would suggest
S is home
T is the building work and noise
A is pretend to be on your phone and wear headphones or defenders
R hopefully being able to feel comfortable in your home and getting out.

Nobody should be made to feel that their concerns are being dismissed.

Just to add support for WestieMamma and to try and help explain for others. I have very mild aspergers. I have no support from external agencies because I don't need it, am a single parent, hold down a job, can drive, things which IME few can do. However today my friend is getting married and I am going to her wedding. Let me explain my thought processes since I have got up this morning.

Oh shit, it's the wedding day. I only know the bride, the groom a little and the bride's adoptive family, but I havent seen them in years. Lots of strangers, crowds, places I have never been - anxiety rocketing. Want to call friend and cancel, but not fair on friend. Oh shit, wet weather, summery outfit. No bag to match, fuck fuck fuck. Ok, take ds to school, call into Primark on the way home, grab bag and maybe cheap jacket. Primark isnt open yet. Shit shit shit shit shit. Need to call friend and cancel. Cant call friend, yes she would totally understand but not fair on friend. Ok, shower and sort card, get dressed go back to Primark. Dad's in the bathroom (note to readers, mum passed away about 18 months ago, and ds and I moved back to keep dad from being alone), cant shower, focus on card, anything to stop stressing about today. Card isnt working as it should. Fuckitty fuck. THere, managed to sort it, eventually. Need to cancel. Need to cancel. Times getting on, not enough time to do everything, need to cancel, crowds of people I dont know, need to cancel. Refusing to let myself cancel. Dad's out the bathroom - finally! Can shower, put card in envelope and head up to Primark - as long as nothing else goes wrong in the meantime (am just about to jump into shower NOW)

Am a bag of stress, hating the thought of today but am doing it for my friend. Have booked today and tomorrow off work so I can have tomorrow to recover - and not from a hangover as 1) I am driving and 2) even if I wasnt, I am driving. And this is for something I have known about for months. Try to imagine the stress and panic when there hasnt been time to mentally prepare.

WestieMamma, sorry for hijack but felt it may be useful for people to see the sort of thought pattern, for me anyway. And yes, they should make an appointment to see you. You could actually refuse to see them/fail to answer the door if they havent made an appointment. Plus is very interesting what you have said about mornings/evening. I am terrible in the mornings, never realised there was a connection.

Like today I'm cleaning ds bedroom, it will take me 2 hours.

The red lego bricks must be in one part, the yellow must be in one part ect.

Then his bed has to be made a certain way, it also needs changing so it has to be washed and put on before he comes home from school.

His bedroom is his safe place, to him his bedroom is everything and it has to be a certain way.

If it isn't then I have no chance of him doing his homework, eating his dinner, getting him to have a bath or functioning.

It may to a lot of people think I am pandering but it's not it keeping routines and things so he is able to function.