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Mr Salvador

D-Day is coming! (diagnosis day) 19th august

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Hi all

 

Just saying I finally got my D-Day

 

19th august

 

bit short notice after such a long wait?! confusing and stressful to say the least

 

so I am to find parental/ childhood witness and have them send the form back 2 weeks before my apt on the 19th! I know some of us have gifts and or extra sensory perception, but seriously, that doesn't give me much time does it?!

 

my father is deceased and my mother estranged me aged 17. im 35 now

 

she is an evil witch who doesn't care about anyone but herself, even didn't go to hospital when my sister had half her colon removed for chrone's, just because she didn't want to cancel a personal trainer apt at the gym!

 

can you imagine how much trouble it was growing up with AS without supportive parents?!

 

ive waited years and finally ive got my diagnosis day and now I have to pull a rabbit out of a hat by Wednesday??!!

 

I seriously hope that there are fancy machines there and doctors who could spot a hair on someones coat from a distance usain bolt could run in 9.58 seconds!

 

I really have to put some faith in modern science now don't I? perhaps too late for prayers too?

 

but I do need a miracle

 

I have got 'too good' at pretending and managed to trick myself even for 30 years before being honest and admitting this to myself after family members made me aware of it.

 

I just thought, so what if im a bit weird?! I knew I had dyslexia, I never needed a test to know that, and I just thought that's all it was. now ive finally admitted it to myself, most of the symptoms describe me perfectly, where no other label or stereotype ever has before.

 

discussing on the forums here is the most social interaction ive had in years.

 

I just hope they know enough to work it out themselves

 

not sure im religious enough for full on prayer, so I guess il just like say .'may the force be with me!'

 

im hoping that diagnosis will cement my self awareness, and help me to meet others, and learn many new things based on fact rather than self diagnosis. im not looking for excuses by any means, but to have a sympathetic employer would definatily be great! and help me to avoid my homeless issues, and help me to get faster help if it turns out my daughter has received a little too many of my genes and early diagnosis I think is the key to having a 'normal' life... or at least a good one

 

by the time ive made it to my age I feel often they might not even care if I am or not. but im doing this now for her, my little princess, so I can do my best for her and if she is ever questioned then they can say for sure, her dad 'is', and so I can get more stable work, even if it doesn't make me rich il be stable and can teach her how to have a stable life no matter whats 'different' about us.

 

it might also help my sisters and other loved ones because most people think I can just be an awkward over sensitive weirdo/ [expletive]. im hoping they will accept that I never meant to be offensive to anyone, its just how I am, not realising that that might not be taken so kindly. sometimes it takes ages for someone to explain to me even how i was wrong. my gf especially gets annoyed.

 

so hopefully better meds and more acceptance might make the difference and help to ease anxiety in daily life

 

  • High intelligene low social skill
  • persistant and random anxieties often with little or no trigger
  • OCD's about everything. Basically if ive already worked out the best way to do something why would anyone else want to do any otherwise since I just showed them 'the best way'! regularly leading to the point above
  • a distinct lack of social ability, even if they are people I know, anymore than a couple of people just blows my head up. I can only talk about subjects I know about and find it hard to remember to ask the other people about them instead of just talking about myself
  • I have a light aversion, mostly to artificial lights, the sun I love but many artificial lights hum or buzz and it annoys me. I made some coloured glasses out of broken bits in 2004, years before I was made aware of ASD. they just made me feel happier and less stressed when 'out and about', later finding that this is quite common in aspie's
  • I notice and get very annoyed at noises, background noises like when someone starts eating a packet of crisps just before the 9pm program! crunch crunch crunch I hear it all and cant hear the program properly! normally dinner is served 7.30-8pm and is done by the time its my choice on tv
  • I find it very hard to understand other peoples thoughts and views if they are not inline with mine or are based on no factual information whatsoever
  • I guess the point above highlights how my mind only really thinks logically. I do have emotions, I just don't understand them well, I seem to know love and frustration, anything else provokes uncomfortable body movements and avoidance routines. I want to love and be loved, but get frustrated when people I love don't love me back the same way
  • two phrases I remember most about my parents: dad-'stop being such a smart[expletive]!' and mum-'oh stop being so pedantic!' this was from age 2, I used to ask questions at that age my parents didn't know the answers to and they couldn't understand how I knew such things. they punished me severely and told me I was a witch
  • I have other family members with 'learning disabilities'
  • learning at school ALWAYS felt like revision, I was always bored and waiting to learn the good stuff
  • I have my special interests which keep me calm and I can lost for hours in them, and get frustrated when I get disturbed doing them, and cranky if it been too long since ive done them

I could go on for ages im sure, I just hope the doctors are smart enough, I hate meeting intellectual inferiors who think they can tell me that black is white!

 

good luck to all self diagnosed, hope it works out for us all! we know we're wired up differently, its just getting someone else to understand...when im put on the spot I do the avoidance things and then my brain switches off and get misdiagnosed as just stressed out

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Great news about your diagnosis day. Hope you can find someone to go with you who knew you as a child for support.

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Great news about your diagnosis day. Hope you can find someone to go with you who knew you as a child for support.

I am speaking to my auntie, she is in france at the moment. however she only saw snippets of an intelligent child who asked questions. not really enough for evidence. trouble is my mother knows that giving such evidence would mean she has to admit she punished me for having autistic traits and it requires her address and phone number and I just cant help but worry that's why she wont help.

 

obviously ive moved around a lot in my life, always transient never rooted. and also because my family had been turned against me by my evil parents...basically nobody alive except my estranged mother can answer those questions :-(

 

im going to leeds its a university hospital and apparently have a well funded unit there. im hoping that they have current research happeneing and fancy machines and dr's with higher IQ's than we have

 

and/or other fancy detection methods

 

if they cant diagnose me then either I will have to live with an 'inconclusive result' for ever or be told that im just plain weird. too many times now ive been misdiagnosed with anxiety, depression, PTSD etc... I just know its more than just those 'simple' things, I understand that an abusive childhood can make anyone those things, but I know its more than that I just know it

 

anxiety rating 11/10

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I have to call them to tell them im having troubles with it, im just worried that they will delay my assessment. they said they have high demand for the service and will give my apt away if I don't have them in two weeks previous! im so nervous, and my gf is running out of patience with my 'traits' and it all might just go badly wrong and il end up alone and down the slippery slope again with no help and serious problem with executive dysfunction leading to homelessness

 

physically I don't look like I have a problem as many don't, but I am vulnerable when it comes to keeping a roof over my head, and now I have a daughter I cant get by on the streets again. did that for 7 years already and nearly died many times. need help

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got partial results back via whatsapp from auntie in france!

 

not completre though

 

my gf will go with me she sees my traits

 

previously in the outside world I have been on my best behaviour trying to appear normal

 

when I met my gf she hekled me to be myself and when im relaxed she thinks im a beautiful person and some of my oddities are funny and I love that I can let my quirks and noises out and she laughs and encourages me to laugh about them too

 

she notices when my triats comoe out more when im tired hungry and stressed

 

she sees it, and she works in mental health so im hoping maybe they will listen to her views.

 

also she can explain much easier better than I can, I am just the way I am and didn't notice how to distinguish my traits properly until I met her. I just thought my sister and mum wanted me to be autistic to prove they were in the right that's what caused my denial phase

 

fingers crossed

 

im so anxious, this is past 11 out of 10 on the richter scale

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It's good to hear that you gf is backing you over this. That must be a great help.

 

Good luck for the 19th! :)

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I can't help but worry things will be worse if they say im not...

 

what else would it be? There's a difference knowing my own mind to showing someone else

 

If they don't have enough evidence I will always be wondering what's up with me and never get help

 

I hate this

 

Anxiety is through the roof

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I can't help but worry things will be worse if they say im not...

 

what else would it be? There's a difference knowing my own mind to showing someone else

 

If they don't have enough evidence I will always be wondering what's up with me and never get help

 

I hate this

 

Anxiety is through the roof

That's what's constantly on my mind too. December is still a long way off, and I suspect with there being several appointments, and with Christmas and New Year breaks, it will drag on into January.

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So confusedtraveller you have your d-day in December??

 

I wish you all the best, at least we have a date now!

 

It just is a big worry, if they say im not then what? Just plain weird and unsociable?

 

I just want it over and done with now. My gf wants me to go back to college so I can get a piece of paper that says im qualified to make money doing one of my special interests!...

 

I love fixing things! When I learn to fix tractors il be able to earn money again to contribute to the household bills again and get back to feeling like a human being .

 

At the moment im in limbo, with everyday anxiety upsetting the ones I care about the most. Its so distressing

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So confusedtraveller you have your d-day in December??

No. Just a suggestion that as I was put on the waiting list last December, my appointment may be this coming one. In January I was told it was likely to be 10 months.

 

And my big worry is that as I'll be 60 in November, and the only two people still alive who knew me when I was little are in their early 80s, I may not get further than the first appointment.

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I was in a similar position to you, Confused. I only had a cousin who remembered me as a child, and even then only vaguely. A phone-call with my specialist was all it took, and I got the diagnosis, so I wouldn't worry too much. Morally, they can't penalise people who, through no fault of their own, have no living relatives.

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Great, now added to that stress I got a bailiff coming in the morning and if I can't get 415 by the time he knocks he will add 235 for a callout!

 

The last thing I need before Wednesday!!

 

Aaarrggh

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Great, now added to that stress I got a bailiff coming in the morning and if I can't get 415 by the time he knocks he will add 235 for a callout!

 

The last thing I need before Wednesday!!

 

Aaarrggh

 

ok so I got 7 more days for the bailiff...

 

now I can try and concentrate on cbt tonight and my assessment in the morning

 

I hope tomorrow goes smoothly as I really do need help with my anxiety and public outbursts :-(

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very weird and confusing experience

 

he kept starring at me and made me even more uncomfortable than usual trying to meet his eye contact. I was just jiggering and couldn't relax in the lisghtest

 

I got to go back on the 2nd now for more testing and they asked my sister and gf some really detailed questions and im worrying now because my sister wont let me see what she has put down and its all getting on top of me now and im stressing out bigtime!!!!!

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Is he a specialist in autism? He should realise that staring causes us stress - unless he was doing it to test your reaction.

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Yes probably testing me I guess but certainly made me feel awkward.

 

My legs didn't stop jigging and didn't know where to look!

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That can be a good thing confused traveller. Best you find out what relatives said about you afterwards because that could come up in the testing.

Well done for going for the assessment and hope Wednesday 2nd goes well for you.

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That can be a good thing confused traveller. Best you find out what relatives said about you afterwards because that could come up in the testing.

Well done for going for the assessment and hope Wednesday 2nd goes well for you.

 

why is it better to find out out what family think afterwards?

 

my sister is tlling me she isn't telling me what she put because its 'confidential' ?!

 

it MY brain we're discussing, how come now shes keeping it from 'me'

 

its making me VERY anxious

 

ao yeah ok back in the 90's as a teenager I took all sorts of chemical substances in an attempt to fit and be like everyone else and be on the same level as someone for once, but that's not why im like I am I took them because im like I am and desperately wanted to be like everyone else!

 

im worried that she isn't old enough to remember what I was like before

 

im also worried that her way of thinking about me has been perverted by my estranged mother who definitely has a way of twisting peoples heads

 

as much as I ever needed help I didn't need hers

 

so my situation isn't clear cut. its easy for me to see how AS fits my personality traits but 'evidence' is hard to come by in my family

 

so the day after tomorrow might either make me or break me! I will either get help, get misdiagnosed again again, or be left in the dark with inconclusive evidence, in which case my life will end up defunct and I wont get any help and most likely have to move out of here and be alone again again again

 

I hate waiting, it sets off my anxiety

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You can ask for the records of what was said afterwards in writing if you wish. There has to be an accurate picture from the families perspective along with yours. Yes it is your brain but how you see the world and how your family sees the world could be completely different, clinicians need to be able to see that. Any coping mechanisms you have developed because of your self identified autism/aspergers need to stop whilst you are in the assessment.

 

eg, My family used to watch catchphrase on tv, gradually i built up a library in my head of expressions learning them by rote. When i went for my aspergers assessment i knew all the expressions except a few. This meant my aspergers seemed milder than my autism actually is because i had compensated. Diagnosticians are unable to see through the scaffolding of compensatory methods we use.

 

Mention your anxieties to the diagnostician, "i did whatever i could to be like everyone else but it didnt work" (if true).

 

You can restart your coping mechanisms after the assessment is complete and the appointments are over. Then see if you can seek post diagnostic support for yourself and your family. Carers assessments for them, monetary benefits for yourself.

 

You are nearly at the end of your assessment, if it helps i went through similar anxieties to you with trying to get my CPTSD diagnosis and got a few misdiagnoses along the way.

 

I hope your next assessment is finally the diagnosis you are seeking,

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Diagnosticians are unable to see through the scaffolding of compensatory methods we use.

 

So true, Trekster.

 

I really do think that those best equipped to diagnose Asperger's are friends or family members, preferably Aspies themselves, who are well-read on the subject. Neurotypical psychiatrists get it wrong far too many times, and maybe after years of suffering the correct diagnosis is at last given. Even within the profession, it's well known that diagnoses depend over much on which professional sees you. It's far from being an exact science.

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I'm not sure I'm really aware of the scaffolding of compensatory methods I use. I've just read Tony Attwood's Complete Guide to Aspergers Syndrome, and there's a lot of it I can't recognise in me, especially the bits he says there's a problem getting a diagnosis under DSM5 without. Although there's some big things that I do recognise. But I'm on the waiting list for an assessment, and I wouldn't have thought I'd be there if they didn't think there's a good chance I'll get a diagnosis. So when my turn eventually comes, I don't think I can turn off my act and be whatever the real me is.

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I did think the same but they know.

 

I got inconclusive results pending further childhood history.

 

So annoying I just want it done with so I can move onwards

 

My auntie says they can contact her and wants to help me so see what she says.

 

She said she just remembers me being very adult very serious and not get jokes bit I've mentioned about Lego and stuff see if it jogs her memory

 

So back in the waiting some

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ok so just to confirm I got an inconclusive result. not ideal.

 

they asked to speak to my auntie more and shes given her details and concent.

 

she remembers me being serious and very adult and very intelligent for my age, but its 30 years ago and shes been through a lot too.

 

obviously when my abusive dad took his own life I felt differently than she did and she has been very upset since, and suggests that maybe there is also reason to suggest PTSD which I do not deny but I know its more and im trying to think how I can jog my aunties memory

 

I sent her details the diagnostic centre and ended up adding a really long message asi do about how I don't deny traumatic events and how ive been seeking help for 17 years without hiding from anything. ive told all the stories, tried all the pills and been to cbt many times. however I am still an aspie and thusly I know there is more to it than just anxiety and depression about childhood events.

 

I went on a rant about 3d visualisation about schematics and that's how im really good at fixing and building things and laguages etc, and how those things don't arise from PTSD

 

oh dear I did have a rant. my gf who isn't speaking to me at the moment for reason of snoring and riggling in the night then broke the silence to ask me what im doing when she hears me drilling the keys on Hotmail.

 

so im trying to get my point across because I am intelligent and don't come across so when im in person in front of people I don't know so they don't just think im broken from traumatic events. far from it! its made me strong and helped me to find my real me! I am an aspie and always have been and just cant wait to start my new life being proud of my special talents and interests, and be true to myself never hiding or pretending again to please others. its made me go grey and im only 35.

 

I need to be accepted as an aspie and left to do my life my own way before I am forced to start singing frank Sinatra at the top of my voice so people get the message!!!!

 

I just hope that they get what they need from my auntie so im not back to square no.1

 

hope she can remember something important. she might not think to mention about me showing her the lego I made but never 'played' with it....

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its made me strong and helped me to find my real me! I am an aspie and always have been and just cant wait to start my new life being proud of my special talents and interests, and be true to myself never hiding or pretending again to please others.

 

This is just how I see it. Maybe it's because that we're aspies that we have that strength to bounce back. People have always said that I had a hidden strength, and I now think it's due to my stronger than average moral sense that extends far beyond my own or family interests. Listed among so-called 'female-type' Aspie traits are: a strong sense of justice, honesty, loyalty and empathy (for people and animals). All these are moral traits, unlike all the rest, such as eye contact, special interests, stimming, etc. which are morally neutral. Of course, most NT's have the moral traits too, but they're not as intense, obsessive or wide ranging. I've often wondered why we are like this, and I feel it's due to us generally being a lot more sensitive - which fits in with the intense-world theory. Autism needn't just affect our physical sensitivities, but can equally affect our emotional/empathic sensitivities. We may not be able to show empathy very well (because it overloads us) but we feel it intensely.

 

Let's hope your auntie convinces them. I'm already convinced! :)

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Oh my! You really are going through it. I really feel for you. I'd give you a massive big supportive hug if I could.

 

If it's any consolation, my parents are too. I never see them really. My mum booked a holiday on my due date to give birth to my daughter last year. I never hear from my dad. I don't bother with either of them any more.

 

Whatever happens, remember the other things we have talked about...it is what it is, you ARE who you are, and stuff the rest. But of course, I hope you get the outcome you hope for. Take care, and whatever happens we are all here for you on here xxx

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Diagnosticians are unable to see through the scaffolding of compensatory methods we use.

 

So true, Trekster.

 

I really do think that those best equipped to diagnose Asperger's are friends or family members, preferably Aspies themselves, who are well-read on the subject. Neurotypical psychiatrists get it wrong far too many times, and maybe after years of suffering the correct diagnosis is at last given. Even within the profession, it's well known that diagnoses depend over much on which professional sees you. It's far from being an exact science.

I couldn't agree more! :dance: I've given up on doctors and mental health services. You are what you are and you gain strength from that. xxx​

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You can ask for the records of what was said afterwards in writing if you wish. There has to be an accurate picture from the families perspective along with yours. Yes it is your brain but how you see the world and how your family sees the world could be completely different, clinicians need to be able to see that. Any coping mechanisms you have developed because of your self identified autism/aspergers need to stop whilst you are in the assessment.

 

eg, My family used to watch catchphrase on tv, gradually i built up a library in my head of expressions learning them by rote. When i went for my aspergers assessment i knew all the expressions except a few. This meant my aspergers seemed milder than my autism actually is because i had compensated. Diagnosticians are unable to see through the scaffolding of compensatory methods we use.

 

Mention your anxieties to the diagnostician, "i did whatever i could to be like everyone else but it didnt work" (if true).

 

You can restart your coping mechanisms after the assessment is complete and the appointments are over. Then see if you can seek post diagnostic support for yourself and your family. Carers assessments for them, monetary benefits for yourself.

 

You are nearly at the end of your assessment, if it helps i went through similar anxieties to you with trying to get my CPTSD diagnosis and got a few misdiagnoses along the way.

 

I hope your next assessment is finally the diagnosis you are seeking,

 

thanks. I also learnt a lot from catchphrase and things like that. I also built up the mental memory links of certain expressions, although its hard to not engage those links when they ask you what the faces mean. I guess I got the easy ones. smiley face means happy, tears means crying etc. I saw some things in the pictures that the doctors didn't see (mostly background items and connections}), so im not in the mentalit of any diasability here. apart from the social thing, new places/people, dyslexia, anxiety and concentration issues I don't have any disability. im just wired up differently, and have many positive attributes about my wiring configuration which to me distinguish AS from PD's and and PTSD's

 

I think they saw enough of how I am now, they just need the links to childhood so they know ive always been like this. my trouble is my coping strategies started first day of school after they all ridiculed me for being the weird kid, so my auntie remembers only so much.

 

she remembers me being very serious and adult like and not getting the jokes and being smart for my age. however she is also aware that my parents had behaviours they wished to hide and she is aware that she may not have been told the whole truth about my development. she certainly only saw the best of me when she came to visit, couple times per year.i probably asked her a lot of questions that were beyond my years but I think she is struggling to make connections between just being smart for my age and possible symptoms of AS.

 

They sent her the questionnaire after they got her conscent a couple of weeks ago and they haven't received it back from her yet so I advised them that she was probably waiting for them to call her. I hope she can remember the little details that matter when it comes to AS diagnosis...did I point at things a lot? did I show her the things I made with lego but didn't play with them? does she remember seeing me play make-belief with my sisters or cousins?

 

she had a hard time when my dad died, obviously I was somewhat relieved but she has been on antidepressants since which is 18 years now, so she suspects I may be affected by his death as she is?! how does one explain to her that I was happy like the munchkins in wizard of Oz?! he was my abuser and I do not feel the same as she does.

 

{I guess I just need them to jog her memory about a couple of little details that she may come across whilst scanning her memory. maybe they just need 'some' detail to add to what they see in me today? I hope she also mentions about our other faily members who have had issues. someone one her side has passed her daughter dyspraxia and dyslexia bless her, they are on my dads side and he obviously had zero empathy and apparently so did his dad. so its on that side of my family, surely they don't need much more?

 

The fact that she has taken more than two weeks now then denotes surely that either, a)she cannot answer due to inability to remember the facts clearly?, or b)that she is trying to learn more about the details of AS to get a better picture? as I hope its not c)cant be bothered or forgot...have I missied anything? my gf seems to challenge my logic when it comes to women or social factors as apparently there are the extra dimension of social and emotional based decsions which I don't usually think of being logically minded. does research help her to answer properly or does it bias her to the label that is being suggested?

 

I knows theres no logic in crossing fingers, and I don't actually do it in real life, but my brain thinks it a lot regarding this. now that my paper trail school report has been shredded im left with not much left but a vague glimmer of hope that my auntie will remember something relavent

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its made me strong and helped me to find my real me! I am an aspie and always have been and just cant wait to start my new life being proud of my special talents and interests, and be true to myself never hiding or pretending again to please others.

 

This is just how I see it. Maybe it's because that we're aspies that we have that strength to bounce back. People have always said that I had a hidden strength, and I now think it's due to my stronger than average moral sense that extends far beyond my own or family interests. Listed among so-called 'female-type' Aspie traits are: a strong sense of justice, honesty, loyalty and empathy (for people and animals). All these are moral traits, unlike all the rest, such as eye contact, special interests, stimming, etc. which are morally neutral. Of course, most NT's have the moral traits too, but they're not as intense, obsessive or wide ranging. I've often wondered why we are like this, and I feel it's due to us generally being a lot more sensitive - which fits in with the intense-world theory. Autism needn't just affect our physical sensitivities, but can equally affect our emotional/empathic sensitivities. We may not be able to show empathy very well (because it overloads us) but we feel it intensely.

 

Let's hope your auntie convinces them. I'm already convinced! :)

 

thanks it does help hearing others thoughts being similar to mine :) (wow the troubles then trying to find that smiley amoung all the others! lol)

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Oh my! You really are going through it. I really feel for you. I'd give you a massive big supportive hug if I could.

 

If it's any consolation, my parents are ###### too. I never see them really. My mum booked a holiday on my due date to give birth to my daughter last year. I never hear from my dad. I don't bother with either of them any more.

 

Whatever happens, remember the other things we have talked about...it is what it is, you ARE who you are, and stuff the rest. But of course, I hope you get the outcome you hope for. Take care, and whatever happens we are all here for you on here xxx

 

wow thanks, I think you did that which you thought you couldn't, but offered!

 

in terms of the catchphrase sub-theme, that was supportive hug. thanks

 

I guess mihaela's right I do show at least some, FTAS symtpoms. it does feel good to be hugged when looking to relieve stress, and sometimes I do over-empathise. I guess when they are situations I have 'can' empathise with I do so overly. cutting ones parents off would be unimaginationable to NT's, maybe its because we're aspie's we can do that im not sure? anyway I don't think about them and never really did, just not having parents put more weight on the women of my life I guess.

 

thanks for reminding me of that which we speak. sometimes the logic is clear in my mind and then sometimes the anxiety makes me forget again. im very happy with most all the people on this site, being the most communication ive done with anyone in recent years at least since giving up drugs and alcohol, in the most part at least. it was easy to fake being 'chatty' and social when drunk or otherwise inebriated. however I have since learnt that this is not me or my character, it had become a fake personaility copied from others around me which had at somepoint been identified, perhaps wrongly, as 'socially acceptable' and otherwise found out to be something I didn't want to encourage. if people acnt accept me for who I am and how I think they sobeit. im not faking it anymore.

 

that's why im looking for my diagnosis now, so that loved ones around me can be assured of what I know about myself, and that im not just annoying and offensive on purpose. this time its not for me. I want my gf to be reassured and not by any means least, for my daughter, in case anything should arise in her coming school years. she is very much the attention seeker I apparently am, and if nothing else she could run into talk about adhd, which apparently I score highly on in online tests but wasnt very aware of. perhaps its just with my gf because im comfortable with her and she is my obsession?

 

perhaps then it is fair to say I do also often over-empathise as FTAS do? your comments about your mother made me angry and have had to partake in coping methods in reading it

 

I don't know. I am comfortable being different and always have. perhaps its the recurring cycles with gf's that has lead me in my old age and wisdom, to feel the need diagnosis to perhaps explain my behaviours. not looking for any excuses, I am who I am I do what I do, sometimes people I care about are offended ghighly about the questions I ask with no apparent feeling and it upsets my gf who I depend on more than id like to admit.

 

its for my girls now, I do it for them, even though the process is making me worse.

 

this site is great, the support is very welcome

 

[metaphorically speaking] 'fingers crossed' that my aunties memory gets jogged by the doctors involved

 

love and best wishes to all x

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wow so they are really taking their time now with this!

 

I sent them more details of a friend from school days who I found on facebook who says he remembers the starring thing and other social ineptities, so all good

 

however the bad bit is that apparently leeds diagnostic service is moving to another building so basically they haven't got round to it yet!

 

how satisfying it must be to move to a shiny new building. the apparently modern curved wood alternative that they made with expoxy bonded lapboards was splitting when I went and couldn't take my mind off the imminent danger present from the poorly weatherproofed system that they obviously thought looked good, but spent no time thinking about the longevity of the design!

 

that made me angry

 

now it is making me angry that he is saying that they are too busy to do my assessment?!

 

If my partner were here she would say that anxiety is clouding my perception of the situation, but am I not right?

 

I told them again she doesn't have much patience for my mood swings and I need to get back into work but the stress of this assessment dragging out is really getting to me.

 

it seems that now I have been honest with myself and admitted a spectrum disorder, I am now, even more so, resentful of 'trying to fit in' in regards to co-working with NT work'mates'. I mean there are often people who talk to me, but it seems when in technical assembly jobs, people on the 'shop floor' don't want me to be excellent at my job. they say it makes them look bad. and my lack of understanding, and ability to 'affect', the underlying social structures of who's been there the longest etc, leaves me in a situation where I am in and out of jobs often leading to being worse off than on benefits and caused problems with work confidence.

 

now that I have time to ponder the benefits of diagnosis I am now realising that waiting for work related support has caused me a mental pause about the situation.

 

I think I have become fond of the realising that I could start a job and keep it with union support if I should have a meltdown at work or become a target of intense bullying from collegues as I was in my last job.

 

I think I would prefer to wait, but my partner thinks otherwise. and regardless of what she perhaps 'should' be doing or thinking at this time. I have to be aware that I am currently reliant on her and she doesn't like that, so I need to do something about work...

 

so I have to risk it all again, just as my anxiety levels were calming and things at home are starting to relax. I have to put myself under the pressure of attempting to be perceived as 'normal' in order to get money into the household to help pay bilss and coming festivities. (in this household this year apparently it will be Yule!?)

 

any, once again I digress.

 

so if the diagnostic centre have had my aunties response and phone call and they confirmed to me that no appointment had been made, did they not have enough information from her? or are they waiting because I messaged them to say I had found a school friend for witness?

 

regardless. I am trying hard not to allow my stress to be seen at home so I am not kicked out before the growingly important diagnosis can give me 'options'

 

[in proverbial context only] fingers crossed (for) everyone!

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The system seems to be designed to be the most Aspie unfriendly process possible. It really makes you wonder if the people doing the diagnosis really understand Aspergers at all.

 

I'm starting to go nuts waiting for my appointment. I switched off from most of the world six months ago, but can't stay like that much longer. I was put on the waiting list last December, and in January told the wait was about ten months, so I was expecting to get an appointment any time now. Then in the summer, I was told a very vague "he was put on the waiting list last December, so it will probably be about this December". And that was the response from the head person, who actually does the diagnosis, and should understand how Aspies think better than anyone!

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The system seems to be designed to be the most Aspie unfriendly process possible. It really makes you wonder if the people doing the diagnosis really understand Aspergers at all.

 

I'm starting to go nuts waiting for my appointment. I switched off from most of the world six months ago, but can't stay like that much longer. I was put on the waiting list last December, and in January told the wait was about ten months, so I was expecting to get an appointment any time now. Then in the summer, I was told a very vague "he was put on the waiting list last December, so it will probably be about this December". And that was the response from the head person, who actually does the diagnosis, and should understand how Aspies think better than anyone!

 

it IS confusing and frustrating

 

waiting is the worst, an inbetween stage which doesn't fit into computational binary code, at least you know where you stand with that, its either a 1 or a 0, never any inbetween stage!

 

I hope it is all worth it! so many stories of not getting the required help

 

im starting to wonder if its all going to worth it at all

 

I want help not a tag round my neck that says 'liability'

 

I want help to get back into stable employment, not have to prove that im not useless once ive been 'labelled'

 

I really do hope it all works out for us all, it isn't right

 

they obviously don't know as much about us as we would like them to!

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Still waiting.

 

How frustrating.

 

Is help 'actually' out there?

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good news, the diagnostic centre have finished moving premesis!

 

they left an answerphone message to say they were putting me priority to get finished looking at my data from September

 

my doctor rang them and he couldn't get through either, so I assume that when he did get through he said something to get me to priority

 

I therefore recommend to anyone waiting and waiting, to be persistant in ringing your doctor and don't just pester them for a response, what I did was to explain to him that I need some other kind of help while im waiting because im getting stressed out at home and its not fair on my family to have to put up with me while im waiting! I think im a lovely person and have a lovely heart and would do anything to make people happy, but apparently when things don't go the way I think they would I have a meltdown and get annoyed and frustrated and for this reason was asking for more help, maybe this is what has promted him to chase them more firmly?

 

usually what I would do is run away and live elsewhere and start again, again...

 

but now I have a daughter and cannot just run away and/ or be homeless like before. I have to face it all and find a way to move on, for her, my darling daughter, the one who has the ability to make my life, up until now, mean something!

 

I need her to know herself and have and make use of all the opportunities she has available to her, so for her I need to go through this now and face the system and pray that they can see it so I can go to a local college that is 'autism friendly'!

 

wouldn't that be nice :-)

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Did they tell you they were moving premises, and that might delay your diagnosis? What frustrates me is lack of information. With the technology available now, it's easy to keep people on a waiting list informed of what's happening, and knowing that we're not forgotten, and there's a reason for the delay, would relieve a lot of the stress. My rather vague "probably in December" for the start of my assessment is approaching, so I'll give them a couple more weeks, then maybe start applying pressure.

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They did tell me they were moving but not until half way through, in fact towards the end!

 

Surely once I've done my assesments and they've spoken to my people then all they have to do it tick the sheet and let me get on with therapy and meetings etc

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Did they tell you they were moving premises, and that might delay your diagnosis? What frustrates me is lack of information. With the technology available now, it's easy to keep people on a waiting list informed of what's happening, and knowing that we're not forgotten, and there's a reason for the delay, would relieve a lot of the stress. My rather vague "probably in December" for the start of my assessment is approaching, so I'll give them a couple more weeks, then maybe start applying pressure.

 

so maybe you could do your own background research first to speed things up?

 

you need people who knew you before age 10

 

they have to give evidence to support the correlation between your symptoms now and how you were as a child

 

if they cannot make the correlation to childhood they will suspect personality disorders to be the cause of 'today symptoms'

 

instead of just waiting you can search these people out and tell them you need help and ask if they remember you as a child

 

there is a standardised email they will send to these people who will speak for you asking questions about how you were back then

 

don't wait longer or you might lose another witness

 

when you have your own evidence go back to the GP and make him push things through

 

tell him you know yourself and you have family members/ friends who knew you back then who now understand that there were issues

 

school reports are good if you have them? mine were apparently burned or shredded 7 years after leaving school so you will have to have kept them all this time??

 

good luck to you

 

apparently my wait is now not much longer, although hasn't yet been quantified. I hope there is help at the end of the wait! I certainly don't need them to know myself better, I just need help dealing with the outside world. when I am home alone I am busy but the only problems either come through the letterbox from, or are themselves 'outside'

 

I guess im not looking for a tag, which is how they make it out to be, I just need help coping with the other 99% of 'people' in the world I have to deal with engaging in things like work, thereby negating the stresses that come through the letterbox!

 

I need a job, but struggle intensly with the other people there, or most recently the lack of attention to detail when it comes to protective equipment in jobs that require it. if they are going to make me do a health and safety test at 6am before I start then they better make sure the PPE they make me wear is suitable for its purpose otherwise im going to have my silly mod swing and start moaning which usually leads to me either leaving or getting sacked

 

so I guess this is the most help I need, as well as for my daughter if she ever needs help. I don't think shes on the spectrum, but if she ever comes up with something associated with spectrum disorders, or indeed if her kids have it because of me

 

either way my head is spinning more now than it ever did because now I am aware of the name of the thing that makes me different. I cant now move on until it is just diagnosed and I can access help and support groups in the real world so I can try and learn more about how to maintain relationships and how to deal with normski's at work

 

there is a place near me that I have found but I cannot access the help there until I have their silly 'tag' on my medical records

 

this meltdown hasn't lasted a long time now on and off more frequently because of the waiting, and my partner is ready to kick me out, bless her she puts up with a lot. I have never hit her, but I do get a bit shouty sometimes and say hurtful things which I deeply regret, she shouldn't have to put with my mood swings and feel that being stuck in limbo is making me this way, and just need it be over with so I can find and access help to live somehow in this crazy world for my daughter and my girlfriend

 

do as much as you can yourself brother, don't wait more than you need to

 

may God bless us all

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Finally the next step! 11th December! :-)

 

Appointment with multidisciplinary autism team

 

?!

 

What now???

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