to think the world doesn't care about adults with Aspergers

[BrainyMess]

I have recently had a formal diagnosis in my mid-forties thus explaining to me at least the struggle I have had functioning throughout my adult life.

I know, I can make sense of it, but people around me know next to nothing about it.
My Dad had never heard of it. My brother said it was a made up voodoo illness that was used to justify bad behaviour, besides I couldnt have it because I was/am emotional, that I do have feelings.

Understanding on forums seem to range from people with Aspergers are murderous (Adam Lanza, Ellot Rodger etc) or its a made up ailment which is good for wrongly claiming benefits.

I have understanding but Im left feeling few care or understand.
AIBU?
I hope I am, I have trouble seeing the bigger picture- my brains wired all funny

btw I've name changed, BrainyMess was a name I was called when I was at secondary school.

No there is no support for adults. I was diagnosed about 3 years ago now and I am glad because it has helped me understand myself a lot better but i would of liked some support and understanding from others which is just never going to happen.

My hope for the future is because there is help and support for children today that are diagnosed with aspergers that this help and support will continue until they are adults. So by the time the ASD children of today reach adulthood there will finally be adult services in place. So today's adults only have to wait until then to finally be recognised and understood.

brainy yes how are you doing is just a polite question where people are supposed to say 'I'm fine thank you' even if they are feeling unwell
Living with people on the spectrum, I know well how hard it is for them communication wise but also how hard it is for me (because I expect their answer to mean something different iyswim).
I tend to see it as learning another language and culture but I know few people will be happy to make that effort.

I agree with 2shoes. The same happens with lots of other disabilities. It's ok for children to receive and need help because they are children. But adults don't generally get a lot of help as they are assumed to be able to look after themselves.

There is also the assumption that if someone with AS has a family then he/she doesn't 'really' have AS.
Check. I have a family.
My assessor said the the cruelty of Aspergers was the yearning and effort to be normal, be like others, have a family job, a life....
whilst carrying a hidden disability that worked against all that.

Or if they have a job, then again they don't 'really' have AS/autism spectrum.
I've had the same geeky job since leaving school. Again working is an attempt to be like normals. I am also very independent. I dont want to looked after, however difficult that is for me.

Or they end up being told that they 'weird' which brings them right back to their school years of bullying.
Especially when your children go to school. The whole school gate thing is very very stressful for me but..
I try my best, I dont want my DD sidelined because of her Mums weirdness

The coffee thing, in some dating scenarios "coffee" means sex. As in "I've had fun tonight, do you want to come in for a cup of coffee" actually means, let's have sex.

I have gotten myself in to scary situations because I haven't understood the double meanings some people use

People are spectacularly under informed about aspergers and autism. In a way it's worse because everyone THINKS they know what it 'looks' like. Before having DS, I would have thought that a child diagnosed with autism at 2 years old who goes to a SN school wouldn't have attracted those 'well he looks fine to me / but he's sitting on your lap, I thought they didn't like physical contact / but he looks normal' comments. The 'he looks normal' one really gets me angry. What does normal look like ffs?

YANBU.

Brainy you sound like a good mother and a hard worker too for what's its worth. You have to work harder than others because we see things a bit differently.

Blair me too! I never get jokes either just left staring blankly at the person (in a crowd I would just laugh when everyone else does).

I think we do a grand job of "fitting in" with normal people (whatever normal means - beginning to think we are all a bit odd really!)

brainy you sound like my DH who us doing all that too :)
I agree that there is no relation with wirkibg, having a family etc and having AS or not.
It's just assumptions and comments you get as you go along. And yes it's cruel for the sufferer.

my sister is an adult and has AS and is always being called "rude" - , she has auditory issues - if a child screams close by it induces a panic attack - she "shuts down" - she stands stock still, she stares, she will say "shut uuuuuup". Outwardly she looks "normal".

Parents do not understand - one woman took her to task, shouting at her that it was just a toddler having a tantrum. Which made my sister wet herself. Her life really sucks sometimes - I wish I could do more....

(the "looks normal" thing is something SHE says herself - sometimes she says she wishes she did not.)

I'm waiting for an assessment. woodlice and of course the opposite applies- people can't assume I know something unless they tell me. I am in a situation like that at the moment. A senior person at work (my immediate supervisor, she's new and we've only been working together a couple of months) accused me of being difficult and obstructive in my attitude. My crime? Doing exactly what I'm told/what's in my job description. No more, no less. Of course, now she's told me to use my initiative, I am doing that and doing things by myself. I thought I was being helpful by checking in with every task, after all how could I do it wrong if I asked her specifically what she wanted me to do/how to do it?

It's the literal interpretation, isn't it.
Picture this, driving lesson, AS pupil, NT instructor. Instructor has already been told to give plain, simple instructions and why. After the lesson, I ask the instructor how it went to be told very patchy, sometimes in control sometimes all over the place, very concerned as couldn't work out why.
So I ask the AS pupil why the instructor has said the car control seems patchy. Pupil said 'Well sometimes the instructor tells me to relax, then when I do relax, they get cross and say I need to focus and pay more attention to the road'

I'm sorry OP that you feel this way. I hadn't heard of AS until three years ago and since then my dh has got a diagnosis, described as high functioning. Good job, outwardly no issues. Just behind closed doors and the negative impact has been on me and the children. He hasn't felt he needed help. The more I read and understand about it though, it seems to me there is a real need for all of us to be more aware and to understand that it comes down to a different wiring of the brain. Since that isn't anyone's fault, we non-AS's are just as weird as anyone else surely?

Have you come across The Girl with the Curly Hair at all? She is definitely raising the profile of women with AS

Thanks for the link allabout, very helpful
Its good to know people understand and good to know there are others out there like me.
Sorry feeling abit overwhelmed at the moment. Im staying under the duvet for now

The girl with the curly hair is fab, thanks for the recommendation allabout

OP I'm sorry you're having such a tough time. If it helps, the way your family has reacted is entirely typical - there are so many threads on the SN boards about parents who can't get their heads round it (dads usually) and relatives who go all Daily Mail about diagnosis (MILs usually).

It's very hard to cope with other people's reactions, so don't. Their path is their path - focus on you. What makes you feel good/relaxed/supported?

I also second the support thread for women with AS on the SN chat board.

I found '22 thing a woman with asprergers syndrome wants her partner to know' an excellent book for explaining female autism to other people, not just partners.

I have a a late diagnosis too.

It's definitely not well understood, I'm in my late 20s and only just diagnosed and whilst my dh -yup I have one of those despite the stereotypes -is supportive other people don't get it. I haven't told most likely f my colleagues as my boss doesn't want me to have a label. One colleague was allowed to give me formal feedback which ripped apart my poor communication skills . I'm seeing a coach at the moment who was horrified at that and said it was the equivalent of giving someone on crutches feedback that they don't run fast enough!

It's hard to explain to people, especially because I've spent so long coping with it. I understand the more obvious double meanings eg coffee/sex but I don't know if that's intuitive or learned. I'm no good at guessing what people want from me though, and it's probably the one which causes the biggest problem as it's hard to learn. So I'm perceived as not being proactive when actually I just didn't know that you would want me to volunteer to do something. To me that's like expecting psychic powers whereas other folk just know. I can sometimes figure out why people have behaved a certain way but it's more of an after the fact intellectual analysis than an intuitive understanding of people -I'll trust someone's motives at the time and only realise afterwards that they were playing games

I'd give you the same advice I give any parent facing a diagnosis on here statistically - all a label does is re-label. ATM your colleague has labeled you as 'Statistically with the poor communication skills'. Whereas 'statistically who has AS and might need a bit of support to communicate x,y and z' is, I think, an infinitely more helpful label to have.

Up to you of course, but I don't think you should go along with your boss if it isn't helping you.

statistically you have just described me perfectly. I think I have hidden my difficulties quite well by using my intellect- often I can think things through logically and guess at the 'right' answer. I also take people at face value. Sometimes while watching TV I'll be all excited because I spotted a plot line as it develops rather than being surprised at the big reveal iykwim and DH will say 'well, duh, I knew that ages ago'

I am thinking about it lonny. It's tricky as that particular colleague is not quite unpleasant to me, kind of due to stuff that wasn't my fault but made them dislike me, so I suspect that it will make little difference to their behaviour sadly. They'll probably put it in the excuse box rather than be decent about it. I kind of wish I had told people when I found out, as now it feels like an awkward secret I've been keeping IYSWIM. I think my boss was probably wrong, but well meaning.

Funny I tend to beat dh with plot lines but it's because I'll notice the little details which he misses rather than working out the people.

I told the person I mentioned earlier that I am being assessed for Asperger's and it's made a huge difference. But then I mentioned it quite early on in our working relationship, after she accused me of being difficult, I assured her I wasn't and was trying my best but that I suspect I have ASD and needed her to spell things out for me. Since then she's been a lot clearer in her instructions, and I don't feel so daft saying 'actually, I don't know what you mean, can you clarify?'.

I am concerned though that people I have worked with for years (and clearly dislike me, partly due to my poor communication skills) will just think I am making excuses. Hence I haven't mentioned it to anybody else at work- or indeed anybody outside of immediate family.

This person actually knew I suspected and had been referred and just brushed it off. The communication criticism came after that. Some people sadly just don't care I fear. Job hunting at the moment!

That's really awful, and I don't blame you for job hunting. I'm seriously considering looking for another job, but I don't know if I am brave enough at the moment- I'm under a lot of stress at home and I'm really anxious without undergoing a big change like that. Besides, I've been in this job a long time (nearly 10 years) and I think as I've got older some things are more difficult. I feel I should be able to fit in more than when I was younger and more inexperienced. Let's face it, a socially inept teenager is hardly headline news, a socially inept, late 20s, married mum is a different matter.

Will you tell potential employers about your AS? And if so, at what point (application, interview, job offer?)

Not sure really. In my industry there tender to be an HR diversity and inclusion type form to complete at some stage which I should probably put it on. I need to check what my obligations are, if any, with regards to disclosure

Will you tell potential employers about your AS? And if so, at what point (application, interview, job offer?)

I've been wondering about this this week. DS (18) has just started a gap-year job, didn't mention his AS at interview (as he assumed they knew about it...) and was very resistant to mentioning on the medical details form before he started. I persuaded him to put it down, but I know it's his decision.

Three days in, when he had a panic attack on being asked to make a phone call, I hope that they'll realise why this might have been quite a challenge to him and not to other recruits.