I apologize in advance for this huge post:\

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1234
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16 Apr 2009, 8:30 am

Heylo,
I just joined this forum as for the past 6 years I’ve had a vague suspicion that I might have Asperger’s syndrome.
And I'm trying to muster up some courage to discuss it with my psychiatrist (I'm afraid any input/suggestions from my side will be rejected as previous therapists never listened to me).

But in the end, even if I'm not diagnosed as AS, I'm pretty sure this forum would be a great place to learn to cope with certain things that might get in the way of life:)

I once more apologize for the size of this post and hope I'm not bothering anyone seeing that you probably get a million of these type of threads a year...but I figured this would be one of few places where people might have had similar experiences etc.

The reason I think I might have AS is because of the following:

- I find it very hard to make friends, and when I do make friends I’m hardly ever able to maintain the friendship. Or I think there’s a friendship when there really isn’t (and I get hurt in the end).

- I often feel like a complete outsider when trying to socialize with others at school/dance class etc. It’s kind of like I’m stuck in a glass box and can’t connect with anyone.

- I think I make eye contact with people, but according to my mum I don’t. She’s always telling me how every time I speak to someone, she wants to tell me to look at them when talking.

- My mum tells me I usually look very angry/concerned when talking to her, even when I’m not. And I often have people asking me if everything’s alright ‘cause I look so sad/lost, even though at that time I’m in a really happy mood.

- I can't give people comments, it comes out really fake, mechanical. As if I’m acting. I’m also very bad at accepting comments or returning one.

- When talking to strangers I smile, it’s a constant grin sort of and I laugh a lot. Even when what we’re discussing is serious.

- I hate spending the night over at anyone’s place/away from home because it means I won’t be able to continue my food routine as they won’t have the foods I’m eating at that moment and I’ll be expected to eat at the same time as them.

- There’s not much variety in my food intake either. I stick to a bunch of foods for a long time and won’t switch the routine until I absolutely cannot stand it anymore (e.g. I've been known to eat waffles every day, breakfast and dinner for over a year).

- I have several interests, though some stay for years (e.g. baking/chocolate, Japanese language, veganism/health foods) and others last anywhere from 2 months to a year. Though when I am interested in something I become obsessed. It’s what I think of when I wake up and when I go to bed. And I try to get every piece of information on it as I can, whether it’s a pack of soymilk (for instance), a videogame or a language.

- Shopping can often be overwhelming to me, especially when I’m alone. Going into supermarkets can be pretty traumatic ‘cause I can’t cope with all the people/colours/vast amounts of products. Garden centers can make me panic as well because of all the colours from the flowers all around me.

- I don’t’ like places with lots of people, when they’re all talking at once. It becomes very hard for me to focus on a conversation or to even pick a conversation out of all the other words. In a situation like that I just ‘turn myself off’ and get stuck in my own thoughts.

- It’s hard for me to hold down a job. I’m too slow (can’t even cope with a cleaning job). I interned at a bakery (dream was to have a patisserie), but all the hustle and bustle around me made it very hard to understand what anyone was saying, it was like it all came out in jibberish : @^#%@&#@)*@*. Apart from that I wasn’t able to remember any of the verbal instructions given to me and had to hear them over and over, which led to frustration in both parties involved.

- I don’t seem to make any movement when talking to someone. I pretty much stay in the same position all the time with no desire to move or readjust. A previous therapist got upset over this.

- I always have my left arm wrapped around my waist tightly when sitting as it’s the only way I can sit comfortable. Even when I’m at school and taking notes, left arm stays wrapped.

- I have the mental capability to be very smart, but since my head is so busy at all times, it almost feels like there’s something constantly swirling in my head, it’s very hard to concentrate at times. It feels empty yet incredibly full.

- I’m okay with changing environments (e.g. moving from one country to another/going to a new school), but I can’t cope with changes in the environment. E.g. some time ago a road on my route had been broken open and you couldn’t use it anymore, other people would just shrug and find another route to their destination, but when it happened to me, my mind completely shut down and I stood there for half an hour until I snapped out of it and decided to follow a lady going to same way as I did.

- I hate traffic. I can just about cope cycling to a place, though the only place I dare take my bike to is downtown, and always the same route, when something goes wrong (a car honking at me or a 'complex' situation at a junction) I tend to shut down or black out. I prefer going everywhere by foot. I also hate buses ‘cause if I get out at the wrong stop I shut down. I can sit in a train but only when I’m right next to the doors.

- I don’t easily show signs of affection and have difficulty being touched/touching anyone outside my family. I can stand a handshake, but that’s as far as I go. So no shoulder pat or any of that.

- I appear to be very calm and quiet on the outside but on the inside everything is just buzzing. Because of this people never really notice when something's wrong until I finally snap and throw with things (doesn't happen often) or start crying.



The one thing that makes me doubt that I might have AS is that I seemed to have had a pretty normal childhood. I had a couple of obsessions with collecting rocks/plastic bags/dinosaurs… I got bullied a lot for being a smart ‘goody two-shoes’ as I refused to break school rules and would beg my teachers for extra homework/detention if I’d forget my library books etc.
But other than that I was pretty normal. Nothing seemed ‘off’ according to my parents. Good grades, had friends….
The biggest noticeable change in behaviour didn’t occur until middle school, when I had trouble with food/got depressed.
While, apparently, signs should be noticeable during the first 3-5 years…
And there doesn’t seem to be anyone else in my family with AS/Autism.

I’m now seeing a psychiatrist for the third time (I’ve been pretty depressed/stressed out for the past 5 years and have had problems with eating during my early teens, and previous psychiatrists/therapist have been of no help) and I have a feeling he suspects I’m schizophrenic as he keeps asking me if I hear voices/have lost time/have hallucinations/feel like ‘they’re’ out to get me etc. (which I don't relate to at all). And he wanted me on zyprexa (I refused) and now risperdal (which I'm also not too sure about). It might make sense, 'cause none of my major problems started until I was 17. But seeing that AS and Schizophrenia get mixed up every now and then… I was wondering if now would be a good idea to suggest AS to him.
Or if I should wait until he suggests it himself seeing that he’s the expert and I’m not.

If you've read all the way to this point, I thank you so much for your time.
Though even if you read it halfway, thank you!



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16 Apr 2009, 8:43 am

1234 wrote:
- Shopping can often be overwhelming to me, especially when I’m alone. Going into supermarkets can be pretty traumatic ‘cause I can’t cope with all the people/colours/vast amounts of products. Garden centers can make me panic as well because of all the colours from the flowers all around me.

I was wondering if now would be a good idea to suggest AS to him.
Or if I should wait until he suggests it himself seeing that he’s the expert and I’m not.


I'm undiagnosed... but an avid researcher and objective consultant. Based on everything you have said, I would just NOT tell this person. Go and talk to a AS specialist and get evaluated entirely independent of anyone you are currently working with or have in the past. What is the harm in that approach? It eliminates the stress of having to "correct" someone and allows you to put yourself in charge of your own life.

There is debate here about getting diagnosed and the right timing of it. But your situation seems cut and dry: YOU SHOULD Try to get diagnosed specifically for AS, as it will put to bed a possible misdiagnoses.

Doctors of ALL kinds get caught up treating symptoms and not recognizing causes. hell, they make good money from dragging it out ;) Why do you think the popularity of a TV show like House, it depicts the real struggle of doing it the HARD way ;) You should be skeptical, but no reason to have such concern over the confrontatoin - when you can just go to a new person without making any changes in your existing doctor relationships.

As for your shopping experience, it connected with something I read last night. Just a random one I picked to comment on, I don't have time to comment on all your others :) Read: http://oddsendsandautism.blogspot.com/2 ... tdown.html

Your Mum seems in touch with you, can you talk over the "independent evaluation with an AS specialist" idea with her?

If it were me, I'd say: I'm an AVID Reader and Writer, and writing about my problem may help me cope. What exactly do these doctors have on file for a diagnosis of me?



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16 Apr 2009, 10:43 am

1234 wrote:
The one thing that makes me doubt that I might have AS is that I seemed to have had a pretty normal childhood. I had a couple of obsessions with collecting rocks/plastic bags/dinosaurs… I got bullied a lot for being a smart ‘goody two-shoes’ as I refused to break school rules and would beg my teachers for extra homework/detention if I’d forget my library books etc.
But other than that I was pretty normal. Nothing seemed ‘off’ according to my parents. Good grades, had friends….
The biggest noticeable change in behaviour didn’t occur until middle school, when I had trouble with food/got depressed.
While, apparently, signs should be noticeable during the first 3-5 years…


With AS, particularly in females, significant difficulties might only show up in late childhood. If you and your parents were to be interviewed by a specialist, they would be very good at picking up any earlier signs from your childhood ... things that your parents might not have thought relevant, and so on.

1234 wrote:
I’m now seeing a psychiatrist for the third time (I’ve been pretty depressed/stressed out for the past 5 years and have had problems with eating during my early teens, and previous psychiatrists/therapist have been of no help) and I have a feeling he suspects I’m schizophrenic as he keeps asking me if I hear voices/have lost time/have hallucinations/feel like ‘they’re’ out to get me etc. (which I don't relate to at all). And he wanted me on zyprexa (I refused) and now risperdal (which I'm also not too sure about). It might make sense, 'cause none of my major problems started until I was 17. But seeing that AS and Schizophrenia get mixed up every now and then… I was wondering if now would be a good idea to suggest AS to him.
Or if I should wait until he suggests it himself seeing that he’s the expert and I’m not.


You might be waiting indefinitely; I once tried that and it was a waste of time. I also realised the psychologists I was seeing would not be suitable for mentioning it to; your psychiatrist might be similar. Try asking a few questions, but not explicitly mentioning AS, to test his suitability. For example, mention a few of the traits you have above and ask for an opinion. Many general psychiatrists aren't very familiar with AS, so sometimes confuse the traits with the negative symptoms in schizophrenia (and with other conditions). An AS specialist is usually the best way to go.



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16 Apr 2009, 10:49 am

You sound spectrum-y to me.


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Detren
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16 Apr 2009, 11:08 am

Welcome to the board :D


I have a suggestion for the shopping, it really helps me out if I have made a list to look at when I go. Also try to go during the down times and never NEVER never shop on the weekend (unless it's a 24 hour place and you can go at 1 AM.)



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16 Apr 2009, 1:57 pm

Hi 1234 :D

Sounds like you've come to the right place as far as WP is concerned.


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16 Apr 2009, 3:00 pm

Whoever you do talk to for a diagnosis, be sure to take your marvelous list.



1234
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20 Apr 2009, 8:03 am

Wow, I wasn’t expecting so many responses!

Sorry for not responding sooner, I was out ‘uni hunting’ this weekend :D

TobyZ wrote:

Doctors of ALL kinds get caught up treating symptoms and not recognizing causes. hell, they make good money from dragging it out ;)


This is quite true, as I’ve experienced it before (with the other psychologists/groupt therapy etc.).

TobyZ wrote:

As for your shopping experience, it connected with something I read last night. Just a random one I picked to comment on, I don't have time to comment on all your others :) Read: [link removed 'cause otherwise i can't post]


I relate to that blog post so much! That pretty much describes it completely. Usually when it gets that bad but I have to continue shopping (e.g. when I’m with family or something) I just turn myself ‘off’. I’ll go through the motions of shopping, but mentally I’ll be switched off for at least 90% hoping I’ll be able to get out asap.

TobyZ wrote:


Your Mum seems in touch with you, can you talk over the "independent evaluation with an AS specialist" idea with her?



I discussed it with her, but she’s scared I think (as in, what if I actually have it, what then? She’d be scared of the label placed on me, even though the ‘label’ wouldn’t make me any different then I am now). And she thought I should discuss it with my psychiatrist (‘cause he’s the expert not me etc.), but after my last talk with him, I don’t trust him all that much.
My sister was a lot more excepting and told me she has found me kind of ‘off’ for years, she did tell me to make an appointment with my GP (who can refer me to the autistic center here).


outlier wrote:
With AS, particularly in females, significant difficulties might only show up in late childhood…


I never knew that:0 That’s interesting…
Are there websites with studies on this, or any research on how AS is portrayed in females?

outlier wrote:
Try asking a few questions, but not explicitly mentioning AS, to test his suitability.


I tried this last time I saw my psychiatrist…
It began with him wanting to put me on Risperdal (to improve my concentration and get rid of the 24/7 thinking that I do), and he quickly stated that it wasn’t because he thought I was psychotic.
I showed reluctance (since antipsychotics are linked to diabetes/heart problems/weight gain etc.), and he told me that basically all my concentration problems would go away if I’d take this. I mentioned the other problems I had (from my list) and apparently those would disappear as well, like magic… oh and I should take it ‘cause it’d help prevent psychosis.

Uhm. Prevent?.... How does he know I’ll get psychotic? Why must it be prevented?

After I questioned the above, our session was quickly ended.

So yeah, I don’t think he’s the right person to talk to about all of this. I doubt I’d be taken seriously.

Detren wrote:
Welcome to the board :D


I have a suggestion for the shopping, it really helps me out if I have made a list to look at when I go. Also try to go during the down times and never NEVER never shop on the weekend (unless it's a 24 hour place and you can go at 1 AM.)


Thanks :D

And also thanks for the tip! I usually put on my headphones with music so I can concentrate on that and shut out surrounding noise, but having a list to look at might be a good idea as well.


Also, thanks everyone else for the welcomes!
And I’ll definitely take the list to whoever I’ll be seeing;)



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20 Apr 2009, 4:26 pm

1234 wrote:
outlier wrote:
With AS, particularly in females, significant difficulties might only show up in late childhood…


I never knew that:0 That’s interesting…
Are there websites with studies on this, or any research on how AS is portrayed in females?


There has been some research on female AS, but not much; it's a very neglected area. There is research on the association with eating difficulties/disorders. There is also information on female AS published, based on the clinical experience of autism professionals, e.g., Tony Attwood.

Here are some links to AS in females:

More Than Just 'Quirky'

BBC Radio 4 Autism and Girls

The Times - Is anorexia the female Asperger's?

Doctors are 'failing to spot Asperger's in girls'

And a very long discussion thread here:
Female Aspies? a different presentation?


1234 wrote:
outlier wrote:
Try asking a few questions, but not explicitly mentioning AS, to test his suitability.


I tried this last time I saw my psychiatrist…
It began with him wanting to put me on Risperdal (to improve my concentration and get rid of the 24/7 thinking that I do), and he quickly stated that it wasn’t because he thought I was psychotic.
I showed reluctance (since antipsychotics are linked to diabetes/heart problems/weight gain etc.), and he told me that basically all my concentration problems would go away if I’d take this. I mentioned the other problems I had (from my list) and apparently those would disappear as well, like magic… oh and I should take it ‘cause it’d help prevent psychosis.

Uhm. Prevent?.... How does he know I’ll get psychotic? Why must it be prevented?

After I questioned the above, our session was quickly ended.

So yeah, I don’t think he’s the right person to talk to about all of this. I doubt I’d be taken seriously.


It seems you're doing the right thing. Also, if there is AS present, medications are more likely to affect you differently (esp. antipsychotics) and there needs to be a more specific treatment strategy taking such matters into account, so that's another reason to see someone qualified in AS.



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20 Apr 2009, 5:02 pm

1234 wrote:
The one thing that makes me doubt that I might have AS is that I seemed to have had a pretty normal childhood. I had a couple of obsessions with collecting rocks/plastic bags/dinosaurs… I got bullied a lot for being a smart ‘goody two-shoes’ as I refused to break school rules and would beg my teachers for extra homework/detention if I’d forget my library books etc.
But other than that I was pretty normal. Nothing seemed ‘off’ according to my parents. Good grades, had friends….
The biggest noticeable change in behaviour didn’t occur until middle school, when I had trouble with food/got depressed.
While, apparently, signs should be noticeable during the first 3-5 years…


It might help you to say that I raised precisely that question with the psychologist who diagnosed me (who is a specialist in autism/AS) - i.e., that aside from a few minor issues, my parents insist I presented as largely normal as a young child; there was certainly nothing that gave them cause to be concerned. His opinion was that that was quite possible, particularly if the person were - as I am - only mildly affected.



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20 Apr 2009, 6:43 pm

BelindatheNobody wrote:
You sound spectrum-y to me.


this. also get a diagnosis


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20 Apr 2009, 7:03 pm

you remind me of me especially with the food thing

and i am diagnosed



1234
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25 May 2009, 11:37 am

Hey guys, just an update...


1. I went to my dr. on Wednesday to discuss this matter.
She got into contact with GGZ (I suppose similar to NHS in UK), and if all goes well I'll receive a letter this week or next week with an appointment to get tested so we can get an indication on whether I have Asperger's or not.
My dr. was pretty accepting of my views on the subject and did say she has noticed my problems with making contact etc.
So that was a big relieve.

2. Today I went to my psych. and in the last moments I dropped the A-bomb:p. I told him what I had told my dr.,
but he wouldn't have any of it and basically just threw all my arguments etc. away with the reasoning that, if I would have it, I wouldn't have got problems at school so sudden (I went from a super student to a school ditcher in just a year:p) and that they would've caught it at an early age (due to unusual behaviour) etc.
I told him that girls usually don't get diagnosed as easily.. and that I'd rather get diagnosed (or not) by people specialized in autism etc.
And he didn't like that I went to my dr. with this.

And of course he tried to get me on anti-psychotics again:\
Even if I don't end up having it, what harm can a test do? Why's he so against it?



But that's the update for now.



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25 May 2009, 5:54 pm

Hi 1234.

Everything you wrote does sound like you have aspergers. Some psychiatrists tend to think if you are attractive, you can't have aspergers. There is even a stereotype that you must be male.



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25 May 2009, 6:17 pm

Not sure about AS. You certainly are experiencing what many do when searching for answers with the experts, 'CONFUSION and no clarity.

You were right to be cautious with 'ZYPREXA' it is an Atypical antipsychotic with understated side effects(Exteme weight gain & linked to diabetes 1). My own experience with Zyprexa was negative(Zombie) and I had horrific withdrawals. I know Risperdol is used with ASD children with aggression issues.

That is good news. All the best with your assessment and hope you obtain clarity.

Don't believe anyone at WP would have been surprised with the psychiatrist's reaction and dismissive attitude.



1234
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25 May 2009, 8:26 pm

I've read that too about Zyprexa:\
And that's one of the main reasons I refuse to take it as my mum already has diabetes. So I think if I'd take zyprexa, my chances of getting diabetes would double.

That's funny about risperdal... I'm the LEAST violent person there is:\ But he keeps telling me how awesome it is and how my mind will be drawn to my body and all this stuff about 'chakras' getting connected.
My reaction: Uhuh. A pill can do that. Riiiiiiiight [/sarcasm]

My dr. pointed me towards him 'cause he seemed to be someone who thinks outside the box and looks at people as individuals etc. But I'm not really noticing much of that.

I know I shouldn't have had much hope of a different reaction from him, but still, because of the above (thinking outside the box), I thought he would've at least been supportive of me. Ah well.
Like I said, whether I have it or not, what harm could a test do? What harm could it do to help me either rule out this one disorder or to help me find out whether I do have it?

kittenmeow wrote:
Hi 1234.

Everything you wrote does sound like you have aspergers. Some psychiatrists tend to think if you are attractive, you can't have aspergers. There is even a stereotype that you must be male.


I don't really think I'm attractive, but yeah... that's true, males getting diagnosed faster, as I've read.

Though, the biggest issue is there being a gap of AS traits in my younger years.
All my mum can tell me is that I never had anyone to play with and the other kids'd keep making up excuses to not play with me, so I was often very lonely (though I can't remember any of this). And that I wasn't as affectionate as other kids my age.

But that's hardly enough to qualify for AS (judging from behaviour in younger years).

BUT in a couple of weeks I'll get the letter for an appointment at the Autism branch of the 'NHS' over here and I'll see what'll happen from there:)