Can You Just Appear to be Aspergers?!

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CoffeeBeans
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05 Feb 2011, 5:47 am

I was assessed for aspergers this week just gone, and the dr can't decide if she should diagnose me or not. Great!

Don't get me wrong, I did go in there and be totally honest, and that included explaining things about me that are not typically AS. I want a fair assessment, I don't want a misdiagnosis.

But I am feeling a bit knocked that the doctor has suggested I could be the way I am because of my difficult life. While I appreciate that could explain things like social anxiety, I don't think it explains my amazing memory, my sensory issues or my inability to recognise people in the 'wrong places'. Things like that.

Anyway, she just summed up at the end of the assessment that she could see why I thought Aspergers, and I was in the right place for my problems, but she didn't have enough evidence to say for sure if my problems were AS or my childhood. My parental input was sketchy on some of the finer points which she said was the biggest problem. They gave some info which was consistent with AS, but couldn't remember some of the important bits like when I walked etc.

As there is no-one else from my childhood, the dr said she'll contact three people who I have contact with now as an adult and then make a decision. Seems a bit strange to me, as surely the problem was the lack of early childhood stuff - so what good is speaking to people about me now?! I mean, that won't answer the question about whether I was born like this or became like it later on?! I know that if I am AS, I am extremely mild in the grand scheme of things. My child is clearly a lot more affected than I am, though it's funny because often we have the same reactions to stuff, but his is just quicker and takes longer to calm down.

Okay I'm just wandering off from my point now really. Can the answer at the end of all this come back that I just appear to be AS because of my difficult childhood?



Yensid
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05 Feb 2011, 6:46 am

CoffeeBeans wrote:
Okay I'm just wandering off from my point now really. Can the answer at the end of all this come back that I just appear to be AS because of my difficult childhood?


I think that it is possible. How likely it is in your case, I don't know. What are your scores on the various diagnostic tests?

I suspect that a lot of the usual Aspie symptoms are not caused directly by the disorder. They are caused by the unpleasant childhood experiences that many Aspies receive. If this is correct, then an NT with strong Aspie traits could turn out looking like an Aspie. On the other hand, an Aspie with only weak Aspie tendencies could turn out almost like an NT.

Unfortunately, AS is really hard to diagnose in older patients. I wish there were better diagnostic techniques, but the state of the art is pretty poor right now.


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05 Feb 2011, 6:49 am

Some possible differential diagnoses:

http://emedicine.medscape.com/article/912296-diagnosis



CoffeeBeans
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05 Feb 2011, 8:00 am

My scores on the screening tests were high. 38 for the AQ test, 20 for the parental input questionnaire (and that's with the parent missing stuff!) and for the empathy versus systemisation thingy I came out as a man basically. And I'm not. For facial recognition, which I thought I was okay with, I couldn't correctly identify negative expressions either. I knew they were negative but not what emotion they were. That suprised me actually. I know I'm sometimes delayed, like I realise who someone is about ten minutes after they've walked past me, but I thought it was JUST a delay thing - not that there are actual gaps if you know what I mean.

Anyway. A big no to a personality disorder, I went absolutely mental when somebody tried to imply I had one as a teenager. I have found things so hard at times, and to have someone imply I'm capable of manipulation and have 'delusions of grandeur' etc just really p***** me off. Okay they didn't say that exactly but that is really what a personality disorder means if you look up the definitions. I had a partner at the time and though we both knew I had issues, he agreed that no way did that description fit me. We divorced years ago but since our son was diagnosed and he read up on aspergers, he says that I am too. Pot-kettle-black really, like attracts like... A lot of the others rely on learning disorders, and the only trouble I have with learning is paying attention, staying on task, and following verbal instructions. Everything else I am okay with. For example I did excellently in school at primary level when tasks were straightforward, but totally lost my way in secondary school and got grades way below what people expected me to.

Maybe I did just spend too much time with autistic people growing up. It is obviously in my family. My parent at the assessment did focus a lot on the sibling above me, as often he couldn't remember details about me because the ADHD sibling took most of their time and attention because he had no danger awareness. Apparently you could sit me in the corner as a baby and toddler and forget I was there, so the parent doesn't remember too much about details.

I don't know. No point keep going over this in my head really is there? Maybe I just want to be prepared if it comes back that there is STILL no answer as to why I'm always different. I'm so fed up of being told I'm depressed and stuff when I really don't think I am.



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05 Feb 2011, 8:29 am

OP - If you're 'extremely mild in the grand scheme of things' why is it even necessary to be diagnosed? Autism is a spectrum ranging from Rain Man to 100% NT. However, many NTs, who neither seek nor receive a diagnosis, actually have a very mild version of Autism which doesn't really make much difference except for making them a bit introverted and quirky. Likewise, some people on WP only have a very mild version of Autism which doesn't really prevent them from doing anything significant. Autism only needs to be diagnosed, and treated, when its a disability, e.g. it inhibits your progress in careers, independence, relationships, etc.



CoffeeBeans
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05 Feb 2011, 9:05 am

I haven't worked in four years and I previously lasted an average of three to six months in each job I tried to do. I'd say that was a pretty big deal.

I also can't stay with a dentist for more than a few appointments before they get rid of me and if I get treated for anything in hospital I wind up discharging myself. I even did that after major surgery a few years back.

I don't want to go into details though, I have reasons for needing to know and if I say too much on here then somebody I know might wind up reading this one day. People that don't need to know, don't need to know.



CoffeeBeans
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05 Feb 2011, 9:06 am

And Rainman wasn't exactly autistic.



just-lou
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05 Feb 2011, 9:13 am

They ask your parents and people who knew you as a child about you in order to diagnose you? Does that sound ridiculous to anyone else? I know of no other disorder or health problem that would involve questioning anyone but the patient themselves.
That's enough to put anyone off getting diagnosed in my opinion.



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05 Feb 2011, 9:25 am

Yeah but like with my child, if you asked him, he's not aware he's different to anybody yet. He has only just about noticed that he's the only child who trashes the classroom every now again (he's in mainstream with a statement).

I know what you mean, but I didn't realise I was different to other people until I was about ten years old. Before that I just thought I was clever, that's what people told me. I sort of got that they liked dolls and stuff but people said I was a tomboy, so for me that was the reason I didn't play (I just read a lot of books mostly) and I didn't need to question anything further. If I am AS then it didn't become a problem for me until I got to secondary school. Well, I didn't think it did anyway, I think my parents would disagree having spent many hours trying to force feed me and stuff as a kid...

But back to the point, I can see why they ask, but it annoyed me that my parent's memory was so rubbish. I also would not ask the other parent, as they beat the heck out of me for refusing to eat and wear stuff etc and for not being the 'proper girl' they wanted. If they knew what was going on, I bet they'd be all triumphant like they were right, I was a little freak all along after all and they were okay to be so mean to me. I didn't really think anything of it at the time, but looking back on it, they treated me really terribly. That was something else I noticed as I got older but I digress.

Also, sometimes my perception of stuff is different to everyone else's, so I think it's right to talk to other people in case I'm getting it wrong.

I am really quite upset about the Dr speaking to people who know me now though. They all know I have 'problems' but they put it down to my childhood and I'd rather it stayed that way to be honest. Because then it's not my fault I guess.



just-lou
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05 Feb 2011, 9:50 am

That's so ridiculous, and I'd imagine diagnostically irrelevant, as I'm sure any psychotherapist could understand that in this society where we're all supposed to be perfect, any parent is going to deny that there was anything obscure about their child, because they would feel it reflected on them. I know that my parents would deny anything was wrong with me as a child, when I know for a fact there was. I knew I was very different ever since I can remmember. No doubt my parents would make excuses to make me look normal - oh you were just a daydreamer, no you just had problems with the other kids because kids are cruel, you were just a shy kid that's all, all teenagers go through "growing pains" - blah blah. Most parents wouldn't want to say "why yes, there was actually something very odd about my child, but I chose to be in denial and do nothing."



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05 Feb 2011, 10:07 am

I feel bad now. I went down the HV baby clinic when my son was four months old and demanded a proper answer about my son's strange behaviours. I read every baby and parenting book going, and none of them mentioned screaming fits or being unable to close their mouth around a bottle!

At his ten month check I sat there again demanding to know what was wrong with my baby. It was everybody else all along that kept making the excuses. They said he was bright but lazy and was interested in certain things, that's why he was missing skills (eg he could feed himself unaided with ease but not sit up).

In our case, with me as the parent, I continually said there was something wrong but the professionals didn't twig until he was three years old. He was diagnosed as four, and the really annoying thing is he's moderate on the CARS scale - not even mild!

Maybe that's just me though. I do know some parents who just excuse their kids behaviour. One of my friends has clearly got two autistic children but she won't accept any intervention despite their playgroup pushing repeatedly for her to get them assessed. She accepted speech therapy eventually for the youngest but even that she plays down as no big deal (you can't understand a word her four year old says). These kids are presently managing in school, I think the younger one has some extra help but from what I understood, Mum thinks it's stuff that happens for all kids, whereas I know that's not true and autism measures are being used (such as a personal timeline - not just a whole class one).

I think maybe you could explain to your parents that AS wasn't really understood until the 90s so it's okay if they missed it because most parents did. Dunno what my friend's excuse will be when her kids hit their teens and still haven't developed any friendships though. Several people bloody told her to get BOTH her boys assessed from the age of 3yrs!

Also the people assessing should be able to see through stuff like parents saying 'so and so was a daydreamer'.

I did have the problem that my parent tried to justify some stuff as being because of my problematic siblings though. Like when they said you could leave me in a corner for hours and forget I was there, and they quickly followed it up with "but then we did have our hands full with the other two". I would hope the assessing doctor would realise though that if I were 'normal' then surely I would have vied for attention regardless?



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05 Feb 2011, 12:01 pm

I think it is possible to appear AS and not have it. If someone is socially awkward, you might think they have it, same as if they have outside interests when really, they are just eccentric and awkward.


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05 Feb 2011, 2:38 pm

just-lou wrote:
They ask your parents and people who knew you as a child about you in order to diagnose you? Does that sound ridiculous to anyone else? I know of no other disorder or health problem that would involve questioning anyone but the patient themselves.
That's enough to put anyone off getting diagnosed in my opinion.


It does to me. What kind of people might they be? Are they out to get you?


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05 Feb 2011, 3:32 pm

What does learning to walk have to do with having Asperger's? Even knowing when somebody first talked is irrelevant because speech delays aren't necessary. Times are not important, it's HOW you talked.



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05 Feb 2011, 7:51 pm

CoffeeBeans wrote:
My scores on the screening tests were high. 38 for the AQ test, 20 for the parental input questionnaire (and that's with the parent missing stuff!) and for the empathy versus systemisation thingy I came out as a man basically. And I'm not. For facial recognition, which I thought I was okay with, I couldn't correctly identify negative expressions either. I knew they were negative but not what emotion they were. That suprised me actually. I know I'm sometimes delayed, like I realise who someone is about ten minutes after they've walked past me, but I thought it was JUST a delay thing - not that there are actual gaps if you know what I mean.


That certainly points strongly towards some sort of ASD.

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I don't know. No point keep going over this in my head really is there? Maybe I just want to be prepared if it comes back that there is STILL no answer as to why I'm always different. I'm so fed up of being told I'm depressed and stuff when I really don't think I am.


It's probably better not to get to wrapped up in a label. Remember, that AS is just a collection of symptoms. Nobody knows why these symptoms are found together. Nobody knows what causes it. Having AS doesn't explain anything. All it says is that there are a lot of people who have the same combination of symptoms. Right now, there are a lot of theories and some interesting results. So, even if you don't have AS, the real reason may still be that your brain functions a little differently from NTs.


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CoffeeBeans
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06 Feb 2011, 3:42 pm

Yensid wrote:
So, even if you don't have AS, the real reason may still be that your brain functions a little differently from NTs.


I like that, it made me think. Even if I don't get the correct label I've always wanted (to explain myself in difficult situations like hospital and jobs mostly), well I can still explain to myself that I'm different even without a label and it's okay to treat myself differently. I like things fitting neatly into boxes in my head, I guess it never occured to me that a box labelled 'just different' might actually be okay.

I'm not a fan of the whole 'waiting and seeing' thing but really there's nothing else I can do now but wait. I feel better now I have my thoughts in order about it all though.