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.

Are you able to explain to your dad and brother?

I guess you need to explain why you sought a diagnosis, what you expect to change in your life as a result so they can get some understanding.

Actually you are probably right, I think a lot of people do not fully understand what your diagnosis means.
As Aspergers is on a spectrum, it will affect people differently, and you may have to spell out how it affects you personally.
I'm sorry your family have not found it in themselves to be more caring and supportive.

People will only seek to understand something it if it effects them directly and impacts upon their quality of life.

It's the same with mental illness. People just don't want to know. You just have to live with it.

Yep, my GP told me there was no point seeking a diagnosis because there's no support for adults with AS. I pointed out that at least I would know and it would help me explain myself to people.

I think many people don't understand that Aspergers is autism, not that they really understand autism properly either but at least most people accept that it is real.

Fwiw I care.

My son has Asperger's and I really wonder about myself as I see quite a lot of myself in him and the stuff I'm reading. I think people often see it as a 'child issue' as there is so much more awareness now and we often hear about children on the spectrum. I imagine there are lots of adults muddling through life who are on the spectrum, but it wasn't something that was really investigated in childhood (I'm early 40s).

I don't know if much has been written for adults, but we have a brilliant book called 'Can I tell you about Asperger's Syndrome' in which a young boy explains his Asperger's, talking about sensory issues, problems 'reading' people, etc.

People just don't want to know. You just have to live with it.

Indeed. I know.
No one gives a damn until their child is diagnosed.

thanks Shakirasma :)

How awful for you to hear those negative comments from your father and brother. I'm so sorry you've met with this total ignorance and unkindness.

My lovely niece (aged 25yrs) has Aspergers, and is also bipolar. She has been very fortunate as she has always met with enormous understanding at her schools and in her Scottish village while growing up.
She also had a great deal of support at University, as she has a lot of depression, can be suicidal and self-harms. Her Uni organised a special tutor to turn to, and the staff there couldn't have been more supportive.

She now works in a bank, and there too she's met with exceptional understanding. Her medication for bipolar symptoms makes her sleepy, and they allow her to go out for a walk in the fresh air when she needs to!

It's amazing people don't know about Aspergers, as it's been featured on TV quite a bit; in any case, nobody has the right to be rude and nasty to anyone with a disability or problem such as this.
I know what you mean about 'messed-up brain'. My niece finds the world difficult to cope with and despite being very intelligent (she got a good degree) she struggles with social interaction.
I wish you well in your life. Don't stand for any nonsense from ignorant, unkind people.

YANBU

They don't care. Even the professionals who are paid to care don't.

There are quite a few adult support groups for those with AS.

Take a look at Jessica Kingsley Publishers too, lots of good reading info there.

I have Aspergers. Am neither murderous nor claiming benefits.

I've never had any support.

I have a DP who 'gets' me and that's it.

I don't do very well socially. School was hell. People tend to bully me. I'm an easy target.

Can I ask how you went about getting diagnosed? Did you just go to gp?

Employers tend to be a lot less sympathetic than school/university. This goes with all kinds of SEN.

aherd I went to my GP and asked for a referral, with the backing of my counsellor. He agreed that I probably have Asperger's, but said there was no point getting a diagnosis, especially as I was coping well at the time.

However, I am diagnosed with depression and anxiety, and when I hit a real bad patch a few weeks ago (self harming, not eating, poor sleeping, constantly crying etc) I went back to the doctors for more help and raised the issue again. This time he agreed to refer me.

So I don't think it's enough to ask for a referral, I think there needs to be an obvious clinical need/benefit.

I don't have Aspergers, but my DS is HFA (high functioning autism). If he'd been diagnosed a year ago they would have probably classed it as Aspergers. people seem to 'get' autism a lot more and IME more understanding.

There's a support thread on here for women with ASD and Aspergers, pop over and say hello www.mumsnet.com/Talk/special_needs_recommendations/1987301-Support-thread-for-women-who-suspect-or-know-they-have-ASD-traits-or-are-on-the-spectrum

My DF was diagnosed with AS late in life. It really helped us work out how to help him deal with family gatherings and emotional situations. I am sorry you have not received a supportive, constructive response from your own family OP.

My DF had a real job to cope with the ( internalised) stigma of what he saw as a mental illness rather than a different way of being. He still struggles to talk about it as he sees it as being something 'wrong' with him rather than just...part of who he is. Might this kind of stigma have something to do with their reaction, do you think?

Unfortunately I completely agree with the OP.
There is no support for adults with AS as such.
And there is very little understanding either, adults, when they are 'functioning' are expected toget on with things and 'fit' the mould.
There was a thread some time ago from an OP whose DH has AS. She came for advice as her DH had had an argument with a neighbour regarding a small thing that took much bigger proportion that it should have. The majority of answers were along the lines of 'well he shouldn't have been rude like this. He has to learn and he clearly can as he has a job and a family'. Ime, this is the sort of reactions people with AS get.
There is also the assumption that if someone with AS has a family then he/she doesn't 'really' have AS.
Or if they have a job, then again they don't 'really' have AS/autism spectrum.
Or they end up being told that they 'weird' which brings them right back to their school years of bullying.

Again, just my own experience, you can try and give information to those close to you. Let it sink (it took 4 years for my mum to start thinking that yes dc2 and DH might be somewhere on the spectrum). But don't expect support or understanding. As an adult, that diagnosis gives you an insight into the hows and whys which is great. Sometimes some protection at work re disability and some adaptations. But that's about it.

Thanks again to everyone for your kind replies.

Sorry if I miss some points or info, Im not good at seeing the whole picture

How did I get a diagnosis?
I went to my GP and asked for a referral. I was referred but I had to pay for the assessment myself.
Like KingJoffrey I am neither murderous or work shy. I have worked since leaving school so I am fortunate to have had the means to pay myself.

My GP knows me well as I have had problems throughout my adult life with anxiety and depression. 15ish years ago I was diagnosed with social anxiety disorder, I had CBT and joined support groups to make me better.
I tried really hard to be normal but with hindsight putting myself in situations my neurology could not cope with caused more anxiety and huge meltdowns.

It's weird I have got to a place of understanding but there seems too few who understand too.

Might this kind of stigma have something to do with their reaction, do you think?
Don't you think its sad that having a neurological difference should stigmatised?
My dad tbh is too old to understand, my brother probably wont accept that his treatment of me was unjust, the neighbours next door will still call me a nutter to anyone that will listen etc etc people will defend their positions.

Whats needed is awareness I think.
Im 45 now, half my miserable life already lived.
It makes me weep to think of children and young adults having to deal with the same prejudice born of ignorance.

I found this terrible story about an 18yo man with Aspergers called Joshua Davies...
'Bullied' teen Joshua Davies told he will not walk again
Joshua's family contacted the police 15 times about attacks he had suffered.

A group pursued him, he climbed on to bridge to get away, the threw stones at him causing him to loose his grip and fall 50 feet, leaving him paralysed.

This ignorance has to stop.

I was diagnosed as adult, in 20s. Agree there is pretty much no support. It is also made worse by people saying "Oh well ask for what you specifically need"- the whole point is that if you lack some social or self awareness, you will not know what it is you need- only other people see the supposed deficits, you see only that other people are expecting something different of you than what you are doing, not what it is they want you to do to make up for that!

I have had this from work supervisors and medical practitioners, who bluff along for a while then say 'Oh well you should have said this/that was a problem'- how on earth am I meant to have done that when it 1. wasn't a problem to me and 2. I assume you know what I am talking about because I have no idea what you are thinking so unless you say that I am not making sense, I will not know! People seem to treat everyone as identical and assume that if you are an adult (especially female adult), you will know exactly how to explain or do things and if you don't, you are just being difficult on purpose. Have had GPs for example saying 'well you have only just told me you have heavy periods, how would I know' when actually I assume they would have read notes or forget that it was a different GP I told, to me they are all the same thing and it is hard to remember which people know which things. Same from supervisors on reports 'why are you assuming people know X?' (but usually in ruder way)- well, because I know and it makes sense to me, you will have to tell me specifically the starting point you want, not demand that I know by magic what other people know because I don't.

I suppose over time you accumulate experience that helps you to know what people expect, but it would be so much easier if it was more structured.

Like KingJoffrey I am neither murderous
Made me chuckle

I suspect I have some form of autism. I don't tend to "get" things. Forget trying to be subtle with me! I don't understand when people say one thing but really mean another (the whole do you want "coffee" thing) for example. I usually judge social situations by people's facial expressions which are harder to hide than their true meanings if that makes sense?
I know if I have missed the point if someone pulls a face. I work with children who have severe SEN and emotional issues and I just don't see a happy future for them.

I suspect I have it too but don't want the diagnosis. Like some of the other posters I have stuggled with social occasions and often put my foot in my mouth so I tell people I was brought up by aliens, or by wolves in a cave and that seems to do the trick.

My family were completely unsupportive and not there for me at all when I have suffered from long-term stress and depression so I don't even tell them anything "mental" as they already think I am a basket case to be avoided. Luckily I have friends who put up with my oddness.

Good luck to us all I say!

the whole do you want "coffee" thing

Whats that then?

I've only just worked out that when people say "How are you?"
They really mean Hello and dont want an essay.
Did I get that right??

tbh that what you are describing is no different to most disabilities

lol brainy I used to actually tell them how I felt .. now just smile sweetly and say fine ta and you? Taken me 50+ years to perfect that!