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darkshine

Can you help?

Diagnosed Adults  

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  1. 1. Is anyone else finding things this hard?

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I'm posting here because the question is generally about help, advice, adult dx and autism.

 

I'm recently diagnosed as I've said already (but there's over 6000 members so you won't all know this)... I've been visiting this site since the 23rd of May - and I am still at a total loss of what to do. In some ways its been like visiting abbreviation and acronym city - I'm really tempted to list them so you can re-experience the hell of this but I'll save your eyes ;)

 

Basically I haven't got a clue, not a clue, about any of this, AT ALL. I essentially know absolutely NOTHING.

 

So in the spirit of ignorance can someone please tell me everything I should / could / might do right now please? :pray: Cuz I really don't have an iota of a clue.

 

This will sound so dumb but I never thought this would happen, I never knew what a referral to the developmental clinic meant - to begin with I didn't really think about it - I never asked for this to be done! The appointments talking to the man about stuff was alright, I liked him, he said the right things so I could answer ok, better than most I've seen, I thought it was fun playing with the computer programs and questionnaires and things, he made me feel less nervous and I was pleased that he listened, he even adjusted his diary so he could see me (with my parents) when they would be here on a visit. I didn't like the meeting with them there, and he wasn't interested in asking me anything at that time (obviously cuz he wanted to talk to me folks) so I put Nine Inch Nails (band) on my ipod pretty loud and looked at the stupid pictures on the walls, we were there a LONG time, I listened to loads of songs, I don't know much of what they said, I didn't want to hear it, I didn't want to know, I wanted to pretend it wasn't happening. I'm so tragic I'm crying now. :tearful: Because I'm not sure if this is real. :unsure: My parents stopped asking me what his report said. I haven't told them. I haven't told any of my family or any of my friends. Only you guys, who I don't even know and who don't even know me - and why would anyone care - I'm just one small voice in an ocean of shouting and I'm pretty used to being drowned out. :george:

 

Its just.... something inside tells me I have to try.

 

I don't know if I should have help, I don't know what help there is if I should, I don't know if I should be talking to someone? or if I should just shut up? I don't know what's out there that could help in any way.

 

I don't know what things are called or anything!

 

If I was a 12 year old I can find plenty of things to look into - but in the plainest way of saying it - and I hate saying it cuz it sounds so selfish - it doesn't help me!

 

And how can I get anywhere when I can't communicate properly - because I've told them everything and I must be using the wrong words cuz they don't understand - I don't know how else to say things - its cuz I come across with no emotion and they think I don't feel. I'm always wound up to hell when I go and that makes it worse, there might as well be walls built round me.

 

:wallbash:

 

I don't know whether this makes a difference or not, but if I'm honest with myself, it feels like I need help.

 

So for me, and for all the other adults out there who feel any of this or anything else, can anyone please let us know what we should do?

 

Because I don't know about anyone else but I'm not taking this at all well but I would like to do something constructive about it because since this 'process' all the progress I had made a few years ago has all gone right down the pan and I'm back to living in a bedroom for 95+ percent of the day, week, month, months.

 

They won't lock me up will they? Seriously?

Edited by darkshine

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Hello, I can't offer you much practical help I'm afraid as I'm the parent of a 14 yr old with AS- Asperger Syndrome. The National Autistic Society provide lots of information so you might find it helpful to look at their website. They have local bases so you may find one near to you and someone to help you make sense of all of this. Your local health service may provide some advice too - your GP may be able to help - I'm not sure about this so someone else on here may add some more useful advice.

Just remember you're not alone, there's loads of people who use/have used this board and have found it to be really useful in a similar situation to yours. also my son still won't accept his diagnosis (6 yrs on) - it can be a massive thing to deal with and everyone deals with it differently. >:D<<'>

 

You're very good at expressing how you feel in writing - this may be a way of letting people know how you really feel? :thumbs: Good luck!

Edited by av16

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Hi,

 

I don't know if I can help... I always get nervous at that word because often in my experience people think they are helping and I feel worse because they're so busy helping me I dissappear and all I really want is to be with people.

I read your words and I feel close to you. Not only in that I share some of your feelings of confusion and fear about what all the diagnosis process is about and your parents involvement. It sounds very painful.

I think one of the things I really feel sad hearing you say is that you communicate poorly or something along those lines. To me you are loud and clear and articulate and I think that communication is always a two way thing - therefore I hyothesis that some of this is about you not being heard! I understand that as being that as 'we' as 'autistic' people communicate differently and sometimes it's easier not to hear us because our reality is challenging to others at times. I am more tuned into sensory experience rather than conceptual verbal constructs that make no sense without translation or clear examples. To me things are what they are or they are not.. also speaking takes up a lot of energy and feels exhausting, then I get angry and I want to run away from people because I feel tense (and that hurts physically!). I think what you need is company and confidence and people who are telling you that you're great.

I really appreciate hearing you and you sharing at this time for me just beginning the process of diagnosis is making it hard to hang on to any sense of my life and I hate being questioned as I have enough going on in my head without all that.

I can't help with the acronyms I just started doing this too and I don't know like it when people abbreviate things (only because I get lost and I like long words I enjoy the sound of words and it upsets me when they change). I think I'll stop now - other than to say, I don't think they'll lock you up and I think if that's a fear of yours then you need company of people who are really listening to you, where you are. Also I found it helpful reading books written by people on the spectrum - JPK publishing might be a place to look.

I am interested in all you say. I keep trying to find professional people who I can talk to and find support with about my life and I always feel alone, I want to work towards developing a more accessible and empowering support service for people who are struggling - for me too! I think we are great at relating when there's space allowed for the possibility that we can be ourselves and still care for others.

Anyway as for day to day difficulties, I think everyone needs help and support and I hope you are ok enough where you are. I better stop now as I'm getting away from where you were and I trust what I say is connected in someway since I see connections between everything. Also life is hard. You're not alone. I cry about all the same questions you have too.

I wish you well. And I would be glad to hear from you. Katherine

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I really don't have any advice re the diagnosis because it sounds like we're at the same junction on that one.

 

However, like Katherine has suggested I'm reading, reading, reading and trying to make sense of it all. Currently, 'The Complete Guide to Asperger's Syndrome' by Tony Attwood which is extremely painful reading but very enlightening. I am also dipping in and out of 'Asperger's Syndrome - A Guide to Successful Stress Management' by Nick Dubin. It may not be helpful in the short-term but it is easy to read and informative with regards to all the things that people believe about themselves when they are continuously exposed to criticism/bullying/being ostracised etc and how it affects their spirit and psyche and suggestions on how to combat those beliefs and feelings.

 

Lynda

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By the way, Nick Dubin has AS himself and knows what he's talking about from experience, not just from 'studying' people and texts. :thumbs:

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By the way, Nick Dubin has AS himself and knows what he's talking about from experience, not just from 'studying' people and texts. :thumbs:

 

So Nick Dubin has a very subjective knowledge of stress management that might work for him, but little in the way of more generalised knowledge that might apply for others.

Some (but not I) would offer that as Nick Dubin has AS himself he would lack the kind of empathy skills necessary to see the 'bigger picture'.

Personally, I think there are just two kinds of advice, irrelevant and relevant (or good and bad / helpful unhelpful - pretty much variations on the same theme) and you takes the good stuff where you can find it.

 

L&P

 

BD

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So Nick Dubin has a very subjective knowledge of stress management that might work for him, but little in the way of more generalised knowledge that might apply for others.

Some (but not I) would offer that as Nick Dubin has AS himself he would lack the kind of empathy skills necessary to see the 'bigger picture'.

Personally, I think there are just two kinds of advice, irrelevant and relevant (or good and bad / helpful unhelpful - pretty much variations on the same theme) and you takes the good stuff where you can find it.

 

L&P

 

BD

It is true that I do find he comes over a little pompous at times but on the whole the book to me is much more helpful than unhelpful.

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It is true that I do find he comes over a little pompous at times but on the whole the book to me is much more helpful than unhelpful.

 

Hi lindylou - I know nothing of Nick Dubin whatsoever so it wasn't a comment on his book /advice - just a general observation that because someone has AS doesn't mean their advice will necessarily be 'good' (or bad!)...

Trying to think of another example - just because someone grew up in the med it wouldn't necessarily make them an expert on med cuisine / lifestyle - they could have lived their whole life above a British run fish and chip shop and never ventured beyond their deep fat friers for food!

 

L&P

 

BD

Edited by baddad

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Hi lindylou - I no nothing of Nick Dubin whatsoever so it wasn't a comment on his book /advice - just a general observation that because someone has AS doesn't mean their advice will necessarily be 'good' (or bad!)...

Trying to think of another example - just because someone grew up in the med it wouldn't necessarily make them an expert on med cuisine / lifestyle - they could have lived their whole life above a British run fish and chip shop and never ventured beyond their deep fat friers for food!

 

L&P

 

BD

Fair Comment. I take your point and I thought I got it the first time but my reply probably didn't convey that. I maybe should elaborate a little. The author does have AS but he also has a Psychology background and he backs up his guidance and suggestions with a number of references. I know that still doesn't mean it's necessarily any good in anyone else's opinion or anyone else's cup of tea but I think it's worth a look. It appeals to me as I'm dragging a ton of baggage behind me! :rolleyes:

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The National Autistic Society provide lots of information so you might find it helpful to look at their website. They have local bases so you may find one near to you and someone to help you make sense of all of this.

 

You're very good at expressing how you feel in writing - this may be a way of letting people know how you really feel? :thumbs: Good luck!

 

Thank you, I wasn't aware they had bases at all! I think regarding speaking I'm gonna somehow have to learn to find my voice cuz they don't pay much attention to writing... I find it very frustrating when I have to say something several times to be understood - its easier to give up sometimes ;)

 

To me you are loud and clear and articulate and I think that communication is always a two way thing - therefore I hyothesis that some of this is about you not being heard!

 

Yep :)

 

I understand that as being that as 'we' as 'autistic' people communicate differently and sometimes it's easier not to hear us because our reality is challenging to others at times.

 

I'm not so sure about this.... well.... I'm sort of in two minds about it. I wonder if 'we' can learn.... Because I can clearly remember a million events that 'taught' me not to talk.... I'm not sure I can explain, but maybe its like a catch 22, like maybe autism on its own doesn't stop you communicating... its other people who don't understand... Did you ever just give up trying? I did, many times, but then you aren't practising so your teaching yourself you can't communicate maybe... I'm not sure if this makes sense at all?

 

I am more tuned into sensory experience rather than conceptual verbal constructs that make no sense without translation or clear examples. To me things are what they are or they are not.. also speaking takes up a lot of energy and feels exhausting, then I get angry and I want to run away from people because I feel tense (and that hurts physically!). I think what you need is company and confidence and people who are telling you that you're great.

I really appreciate hearing you and you sharing at this time for me just beginning the process of diagnosis is making it hard to hang on to any sense of my life and I hate being questioned as I have enough going on in my head without all that.

 

Do you see? If we had confidence to try it might get easier. I really hate the whole people misunderstanding me thing, and me not understanding things that "should be obvious".

 

I really appreciate hearing you and you sharing at this time for me just beginning the process of diagnosis is making it hard to hang on to any sense of my life and I hate being questioned as I have enough going on in my head without all that.

 

I think we are great at relating when there's space allowed for the possibility that we can be ourselves and still care for others.

 

I trust what I say is connected in someway since I see connections between everything

 

Your welcome - although there's some things I wish I hadn't said sometimes :lol:

 

I would like to experience belonging, but there's one thing I know for sure, I've spent ten years boxed up in a room, I'm not putting myself in another one - by that I mean that things like this are brilliant but me, I need to get out into the world too.

 

It does seem connected in a way I cannot explain....

 

Thank you Katherine - and sorry for quoting you like a million times :D

 

 

The author does have AS but he also has a Psychology background and he backs up his guidance and suggestions with a number of references. I know that still doesn't mean it's necessarily any good in anyone else's opinion or anyone else's cup of tea but I think it's worth a look. It appeals to me as I'm dragging a ton of baggage behind me! :rolleyes:

 

Baggage :P I think a lot of people have that.

 

I've heard the tony atwood book mentioned before - not sure what the general opinion is on it but I don't think I can face it just now. I've noted the details of the other book you and bd have been discussing - will look at a review and see what I think (some sites give a sneak peak)

Thanks for posting

Darkshine

 

I think there are just two kinds of advice, irrelevant and relevant (or good and bad / helpful unhelpful - pretty much variations on the same theme) and you takes the good stuff where you can find it.

 

But where do you find it?!? :blink:

 

So, we've ascertained that the NAS website is a main port of call, and possibly regional ones? There are books about for people to read.

 

Are there no other useful websites?

 

How about methods people use to help themselves? For instance I know CBT exists and what it is, but what other things can we try?

 

By try I mean to be able to deal with a particular problem - or cope better with it.

 

Also a lot of things seem to be things to do inside - like reading or websites? What if you need to outside but can't do this, so you need to learn how to do this, I'm not sure that reading is the best way forward for this kind of thing?

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