I have my referral appointment for 19th March, been a long battle to get there. Its at the Cambridge lifepan clinic for diagnosing adults. I am quite excited but nervous that I may not get a diagnosis due to lack of eveidence rather anxious and paranoid - impairment in imagination. What will I expect anyone received a diagnois from Simon Baren-cohen's clinic, they put so much emphaise on developmental history. My mum keeps saying there was nothing wrong with you, you were normal except that I thought you were deaf. She never noticed I was different, all my cousin's did, thankfully I have them involved. My mum is in serious denial because she first admitted it made sense for me and mostly her - she learnt like me, had bad social skills, narrow focussed obsessions, poor empathy - still does. Makes sense to her for both me and my sister. It pretty mad as a mother of a 30 year old and a 25 year old to find out why you struggled so much - because you are aspie and brought up to aspie kids, it was like my sister had challenging behaviour when she was stable I became challenging.
Fruitcake.
About you being anxious about lack of evidence from your mother's side I think the doctor's that will do the diagnostic work will see that your mother is on the spectrum as much as you are.
Good luck!
It was intially an issue for me when I was told I may have AS that life could have been different if I'd know at say 15. But of course thats an irrelevant though and so many good things have happened in my life that I really would not want to change anything anyway. I want confirmation I have AS so I can understand the issues that make me different to 'normal' people. I don't expect life to change. People seem to like the different way I behave and respond to life because I think sometimes other people really think the same way but don't dare to. I actually like being weird and odd and crazy and not right. To my mum and dad there is nothing wrong with me either.
I hope you get the result you want, good luck, Michael.
They may see us arguing my mum stresses me, I say I do this she says I do that, my mum is more impaired than me! My empathy and communication is far superior but everyone around me criticises me for being me-me and talking about myself! My coucellor said everyone talks about themselves - they all see it in me, in denial and trying to fix me! Like its bad behaviour not actual condition! These people who do this show characteristics and/or traits.
I talk about myself all the time and rarely ask other people about themselves. Often when people talk about themselves to me I just switch off and just wait until I can talk again.
I know what you mean, my parents (ESPECIALLY my Mum) are the same: "There is nothing wrong with you, why do you think you are defective, that's silly!". Um, I never said there was anything *wrong* with me, or that I think they did anything wrong in bringing me up!
The weird thing is that they often tell stories about how I used to toe-walk all the time (and my Dad is still convinced that's why my little toes are now a funny shape because they were normal when I was born), how I uses to parrot what everyone said, was stubborn with routine, hyperlexic (well they don't use that term because they don't know there is such a thing), wouldn't let people interefere/touch me but didn't walk/explore voluntarily until I taught myself to read (and thus was motivated to run from sign to sign reading each in turn), didn't communicate pain etc. and was humming to myself all the time/lost in a world of my own.
BUT bring any of that up in the context of "Look I went to see this experienced lady who worked with autistic people for many decades, and she thinks I am mildly autistic" and they tell me if I want to believe I'm nuts then go ahead. Um...
By the way, the thinking you were deaf is a BIGGIE... so don't worry!!!
Fruitcake.
About you being anxious about lack of evidence from your mother's side I think the doctor's that will do the diagnostic work will see that your mother is on the spectrum as much as you are.
Good luck!
My mother has no empathy problems. But, she is clumsy and disorganized, and fairly restricted in abilities/interests.
However her brother seems to be a more obvious case of AS. He never moved from his childhood home--the man is 75! Everyone has always thought him just a "tad bit odd," in some ways. You mention something he knows about, he goes on monologues that just won't stop until you let him know that he's rambling on and on.
He's hyperlexic in that way. Really good with language, but to an excessive degree--he won't stop talking. To get him to stop you have to interrupt him!
He'll also go up to people he doesn't know and talk about topics *he's* interested in, and the people don't always respond like he wants them to. Then, he gets a bit more quiet.
He appears to have no awareness that others see this as odd.
I know what you mean, my parents (ESPECIALLY my Mum) are the same: "There is nothing wrong with you, why do you think you are defective, that's silly!". Um, I never said there was anything *wrong* with me, or that I think they did anything wrong in bringing me up!
The weird thing is that they often tell stories about how I used to toe-walk all the time (and my Dad is still convinced that's why my little toes are now a funny shape because they were normal when I was born), how I uses to parrot what everyone said, was stubborn with routine, hyperlexic (well they don't use that term because they don't know there is such a thing), wouldn't let people interefere/touch me but didn't walk/explore voluntarily until I taught myself to read (and thus was motivated to run from sign to sign reading each in turn), didn't communicate pain etc. and was humming to myself all the time/lost in a world of my own.
BUT bring any of that up in the context of "Look I went to see this experienced lady who worked with autistic people for many decades, and she thinks I am mildly autistic" and they tell me if I want to believe I'm nuts then go ahead. Um...
By the way, the thinking you were deaf is a BIGGIE... so don't worry!!!
Well this kinda sucks. I don't have this deafness, or even most of the other traits listed here. I have a lot of problems, but the most obvious ones are social impairments. I can't really ask how other people are doing, and it seems like I don't care.
I do remember being honest to an extreme degree until I was about 10, or so. I remember going to some museum exhibition with a friend, when I was 8 or so. My friend's father took us there, and it was boring, I thought. I thought it sucked.
When we got home, he asked both of us if we liked it. My friend said yes or something. But I thought I was supposed to tell truth, at all times. I said, "No."
He answered, "what you didn't like it?" and gave me a funny look.
I thought I hadn't done anything wrong!
My gp is trying to get me assessed at the Baron Cohen place also, and I am very anxious myself as my mother certainly would not accompany me and believes that there is nothing wrong with me that I cannot fix myself. I will have to try and get my father to come along if necessary instead, tho my Gp doesn't seem to think I will need a parent if I remember enough of my history myself...seems a little silly to need a parent at the age of 31.
I'd love to get a diognosis from the the Cambridge Lifespan clinic myself because I know they are very strict in the criteria they use and having a diagnosis from them I feel would mean that if I decided to tell my family or someone else they would be more likely to believe it.
I don't want to risk going to some phychologist that isn't very knowegable about autism and for them to say I incorrectly say I don't have Aspergers.
The things that put me off having an official diagnosis is having on my medical record because I feel it could be used to my detriment. Like theoretically having to inform the DVLC and insurance companies.
As I understand it the Cambridge Lifespan clinic won't make a diagnosis if someone at least 5 years older than you cannot give evidence of your behavour when you were young. This would be almost imposible for me to do.
From their leaflet:
'The patient must have an informant
who knew them well as a child, ie.
parent or older sibling (at least 5 years
older). If there is no informant
available, we regret you cannot be
seen by CLASS. Whilst we recognise
this may exclude older patients who no
longer have any family, an
independent history of the patient’s
development is recommended by the
WHO and APA.'