Please can someone talk to me about Autism and Asperger's Disorder.

[SystemofaDowny]

I am not new but this is the first time I have posted. I hope that I can get it right. I have read a lot of this forum and have seen that some people here have lots of information about Autism and Asperger's Disorder. I would really like to speak to a person about it. I am sorry if this is the wrong thing to do.

I am very sad right now and always have known I am different to other people. I do not know how to explain this or make anyone understand. I look the same on the outside but I am not the same inside but I try so hard. It is so difficult but I don't know what else to do. I have so many worries because I can't do the same work as other students in my class. Everything is more difficult for me. I had this same problem at school and at college. Everyone says I am too clever and should not have a problem but I do and it is so hard.

A college tutor told me I should be tested for Asperger's Disorder and get more help but I did not know how to do it and then I left that college. I did a test online and it scored me 43. My mother has laughed at me that i am autistic because I never played the same games as my brother and had strange hobbies and wasn't like the other girls in my class. Also she was the same when I stopped talking and eating at school and when I changed schools.

I do not know what to do. How will I know if this is true about me? What do I need to do, to make this better and so I can do the same as other people? I am so tired from struggling all the time but I don't know how to talk about it with people. I have no friends to talk to and I find it hard to talk to my tutor or my family. Please can someone here talk to me, I have tried to write this so people will understand me. I hope I have not upset anyone.

Thanks fuzzpig

Good luck

Thanks fuzzpig, I'll have a look at that, hadn't heard of it before.

I do have some issues with the social stuff as well (though part of that is probably just shyness) and other things, but the hearing one is what really jumped out at me - I've never heard of anyone else having that sort of problem and always thought it was just me!

Its ok. I am very happy to let other people do all the talking and I can just read it for information. I have been reading also the NAS website that was recommended. I was looking to find what weird stuff is possible symptoms and what is just my own strangeness. Everything I read seems to be a symptom. This does make me feel a bit better but also bad too because I know it is something that can't be fixed and I can't be normal like other people if this is true. Also i am getting worried now that I can't stop thinking about it. I read website all last night, I had no sleep and now again tonight it is all I can think about. I am still not sure if to talk about it with the doctor. It is going to be really hard and will be for nothing if it is a problem that can not be cured. Some people here have said getting diagnosed made them feel better anyway about who they are, but I am not sure I can understand that right now.

I understand what you mean. It is really hard because suddenly I realise if it is AS then I have been disabled my whole life. Not 'useless, crap, fucked up' etc like I've always thought, but disabled. And I will be disabled forever.

But while there is no cure there are ways of learning to cope, and I bet that will be a bit easier if you get a dx and you can find out what is more likely to work for an AS sufferer.

There is no point in me saying "don't dwell on it" because that is precisely what I have been doing! It is all consuming. The obsession itself may be because of AS! Use that to propel yourself along to get to the doctor. Keep writing the list.

Is there anyone in RL you can tell about this? I think you said your tutor told you about it in the first place - I'm sure they'll be understanding and cut you some slack.

You can do it.

No it was a tutor at my old college was the only one who actually knew what I meant when I explain the problems I have with work. It is hard to explain but even though I know almost everything about a subject, I still can't convert that into written work. The only way to explain is it is like trying to write an essay in a foreign language. Also I struggle with the format of some of my exams is very confusing for me. Open questions like discuss a topic are almost impossible and I struggle to scrape a 40% pass but short answer or MCQ on same topic I get 90-100%. My new tutor doesn't understand at all, I try to explain today in tutorial my worry about exams and also that there is no timetable and I need advance notice so I can plan for changes. It is too much hard work to talk to her so I just start to say 'ok' to everything even when it is not ok and I really didn't understand what I have to do. at least she doesn't write it down for me now because I told her I forget everything after I go out of class.

What about if you booked a GP appointment, and then you would have something concrete and specific to tell your tutor? Rather than something so massive and seemingly endless as "I think I have Aspergers".

Remember it is a disability. None of this Is your fault, and it is nothing to be ashamed of. If you have it, or even if they think you do, they can't discriminate against you. You might get extra help too.

I know it's so hard but I think you need to play the 'long game' here. Be logical about it (we are good at that, right? ) - the sooner you do this the sooner you could be getting help to overcome some of your problems.

If you have Asperger Syndrome, it helps if you have friends who also have it (even if they're 'just' online friends) because they totally "get" you and can understand how you're feeling. Of course there are still jerks with AS, so it doesn't mean you can be friends with everyone with it, but it does help you feel you are not alone, and can ask questions "do you feel like this too?".

I have found it amazing that as soon as I (and now System) posted about these things, lots of others have rolled up saying they have the same problems. It sucks that others are struggling too but it is nice that I am not the only one - especially as I've spent my whole life feeling inferior.

I am tempted to join the NAS too, I think they have a specific Aspergers group. I will wait for a while though, as right now having lots of MNers is fantastic enough!

In other news, my dad did indeed recognise a lot of himself when he read up about it. I've recommended he phones the helpline to talk about it.

I will be seeing my line manager (and possibly the general manager too) tomorrow. I'm glad I will be able to say I have the referral, as I was worried this would all be for nothing. I feel like I can relax a bit more and maybe tell other people but I'm not sure. I know they will ask if they can do anything but I don't know what to say. I do well in my job and I don't want them to suddenly think of me as different or unstable or something. I find it scary when I can't tell what other people are thinking. But I want them to maybe understand when I seem standoffish or rude.

There are a number of leaflets that you can give a work place to help them understand, these are downloadable from the NAS Website. There is also Prospects, which is part of the NAS which helps with employment/employers:
www.autism.org.uk/prospects

Thanks Mary. I think I will print out a couple of those employer fact sheets.

I will tell them that while I want them to understand me, I am also really paranoid about being treated too differently. I have loved my job and the praise I've got has meant so much to me because I knew it was genuine. For example my line manager has often said how proud she is of me because my confidence has increased. I am worried that in the future they will be being nice about me because of the AS. I think because I can't read people very well I assume the worst, I tend to think people are patronising me, or just lying when they compliment me.

It is true that they want to ask parents- I know the local Specialist Psych always asks to, in order to get an early history but CRUCIALLY she says 'if possible'. IMO if this will lead to increased difficulty for the person being assessed it comes under not possible.

I have no intention of involving my Mum; she herself knows she has AS (as does Grandad) and it would only upset her to have to get all the way over here and speak to the Psych. I know my early history well enough- hyperlexia, problems with coordination of the type typical in people on the spectrum, etc.

I also have no intention of disclosing any DX unless I personally choose to. now, I move in an ASD world- work, family, play- so that will be often but for example I have a really unpleasant bigot of a BIL and there is no way he will ever know. Simialrly with work- my closest competitor in my field uses his ASD status to get away with all sorts of crap and I would rather not invoke memortes of him (it isn;t his AS status, he is just generally unpleasant). OTOH if it helped a client I would have the option of making that choice to disclose.

Oh and the Wired AQ test is NOT as AS test.

It has a high correlation to dx but has not been adequately verified clinically, as you will see on the ARC website. It does however have quite a lot of kiudos and would be enough to trigger assessment for many profs I know.

Also be aware that by the time you see a Psych AS will probably have disappeared from the diagnostic manual (DSM) and come under the new more generic ASD heading.

Oh are they actually changing it? I read a bit about the (small) difference between AS and HFA, is it to do with that?

Spoke to line manager, it was ok but due to timetable wasn't a full private chat. I felt pretty wiped out after. Like my whole personality had been ripped apart even though I was the one talking! I feel all vulnerable now. I did actually say to her that I regretted even saying anything but she reassured me I'd done the right thing. Will probably have another discussion, with manager there too, next week.

How're you doing System?

I am not doing very good right now. Too much conversation even online makes me really tired. So I just like to go quiet until I feel better. I have still been reading all posts and also went to the Wrong Planet website to read also. I read some stuff on there that is the first time I ever knew other people do things I do too. Things I have never told anyone about because I know they are not normal and it is very strange to see them written down.
Still don't know if this is all true and don't know what to do about it. I don't think I will have energy to speak to the doctor on monday yet. Even thinking about it makes my brain hurt too much.

{virtual hugs} - its a lot to come to terms with. Be gentle on yourself, if you're anything like me, its like your whole life flashes before your eyes, as you re-evaluate your life based on this new info. Glad you've found Wrong Planet, as seeing others like me meant I wasn't alone in how I felt.

Meant to add, fuzzpig, when I told my manager it really helped. He was SO understanding and SO much easier to get on with after I told him. It helped I guess that he had epilepsy and a stammer and knew a little of what I was going through.

That's ok System. You need time to come to terms with it. It is so bizarre (understatement of the century) suddenly seeing yourself in a whole new light. I think the only reason I got the referral so quickly was that I am incredibly impatient and HATE HATE HATE uncertainty (another AS trait it seems?), so for once I used that to my advantage. But not everyone is the same even if they have the same disability, we are all handling this in different ways, so go easy on yourself. We're all here for as long as it takes.

Mary - I'm glad your boss was understanding. My LM was very nice. I'm nervous about seeing the manager because I haven't spoken to her since all this - she is a hard-to-read person anyway and that scares me a bit even though she is very friendly. I have no idea what she thinks.

I have started a general ASD support thread here if anyone is interested x