formal diagnosis?
19 Feb 2007, 1:13 am
ZanneMarie wrote:
Graelwyn wrote:
ZanneMarie wrote:
Graelwyn wrote:
I am seeking a formal diagnosis because for 1, my parents will not believe my issues are down to AS without that, if that is even enough for them, and at present, I still need their assistance, and am tired of being called lazy among other things.
For 2, I think it is too easy to self diagnose...no offence meant, but anyone can go and look at a list of traits, and decide even on a flimsy basis that they must be AS. Yet, there are many other disorders and syndromes that mimic AS in various ways, such as avoidant personality disorder, Schizoid personality disorder etc etc. Having said that, one Psych might diagnose an individual with one thing, while another might decide on another thing, so even the damn diagnosis might be based on the subjective beliefs of the psychiatist.
But really, without that solid, on paper diagnosis, I will not fully believe I have it, no matter how many of the traits I fit, no matter how familiar the autobiographical accounts are etc etc. I need solid, irrefutable evidence...or what for me would be more irrefutable than my own self diagnosis. Okay, I am sure I have mispelt irrefutable, it looks wrong, lol.
But anyway... I am trying to get on the list to be Dx'd at CLASS by Baren Cohen's team. Annoying it needs a parent with you, but still.
For 2, I think it is too easy to self diagnose...no offence meant, but anyone can go and look at a list of traits, and decide even on a flimsy basis that they must be AS. Yet, there are many other disorders and syndromes that mimic AS in various ways, such as avoidant personality disorder, Schizoid personality disorder etc etc. Having said that, one Psych might diagnose an individual with one thing, while another might decide on another thing, so even the damn diagnosis might be based on the subjective beliefs of the psychiatist.
But really, without that solid, on paper diagnosis, I will not fully believe I have it, no matter how many of the traits I fit, no matter how familiar the autobiographical accounts are etc etc. I need solid, irrefutable evidence...or what for me would be more irrefutable than my own self diagnosis. Okay, I am sure I have mispelt irrefutable, it looks wrong, lol.
But anyway... I am trying to get on the list to be Dx'd at CLASS by Baren Cohen's team. Annoying it needs a parent with you, but still.
Go to a Neurologist and get a fMRI. They can't argue with a MRI. And let them try to argue with the Neurologist. Guaranteed that he or she will not put up with your parents saying the MRI lied. They are a pretty ego-centric bunch who don't suffer fools lightly.
I have zero use for Psychiatric diagnosis. There would be no point to me getting that since anything they say is subjective and not scientific. It's a brain disorder. I'd only trust a Neurologist to tell me what is physically happening in my brain, not some shrink who wants to tell me what they "see" and "think." Yeah. That's real concrete.
Just make sure you for you, Graelwyn, that you are comfortable with whoever gives the diagnosis and you feel your parent's will believe them. Remember it's about you.
How do I get to see a neurologist and get an MRI and would it really show any difference on the MRI? I am assuming that is a form of brain scan or something???
Check out your insurance. Some insurance requires your regular doctor refer you to a Neurologist (which is really easy to get them to do). Other insurance lets you go directly to a Neurologist. If you have PPO insurance or HMO, make sure the Neurologist is on their list of approved doctors. They either won't pay or pay as much if the Neurolgist isn't in those cases. Some insurance companies, even PPOs, do not make specialists be on the list. All of the rules are different. You should have an insurance policy guide that explains that.
I can't remember if you are in the UK, but if you are and you don't want to ask your parents the rules there with the health care system, I will find out for you. I know someone over there who would find that out. So, just let me know. I believe in the UK, the regular doctor has to recommend you to a Neurologist, but I'm not positive.
An fMRI shows functional brain imaging using colors. It's based on heat sensing in addition to magnetic resonance imaging (MRI). The heat sensing shows where your brain is functional. In Autistics and people with Asperger's it actually looks different and you can see where the messages aren't making it and the executive functions that interpret things in social situations aren't working. A Neurologist could show your parents a fMRI or your brain and a normal brain. The difference would be immediately apparent. It's very hard to argue with evidence like that. It would be like the Neurologist showing them a MRI of brain damage and a fMRI of what that means functionally to the patient and your parents saying, I don't believe that, she's just lazy. See what I mean? That would not go over well with a Neurologist and they would have plenty to say to your parents about it. They aren't exactly known for bedside manner.
I hope I explained that well enough for you. I'm trying to make it as easy as I can to understand. I tend to use computer terminology to explain it many times and that loses some people. So, if I do that to you, just call me on it and I'll explain it better.
I am in the Uk, and yes any help you could find me. The problem is, you don't tend to just go and ask your doctor to refer you to a neurologist...I am not sure mine would be as tolerant of that request as my request for him to get me assessed at CLASS.
19 Feb 2007, 1:14 am
19 Feb 2007, 1:15 am
19 Feb 2007, 1:16 am
19 Feb 2007, 1:17 am
19 Feb 2007, 1:32 am
Here I go again with the multiple posts, bloody forum glitches! 
Last edited by Graelwyn on 19 Feb 2007, 1:43 am, edited 1 time in total.
19 Feb 2007, 1:42 am
ZanneMarie wrote:
I think it is of significant note that all the studies have found differences in the same areas of the brain, including studies of monozygotic twins. Many of them are already going into clinicals. The reason the Neurophyschologists are using it is because they have openly admitted that their diagnostic techniques are lacking. They know they are going to have to get to concrete facts.
One thing is for certain, if they are seeing the same thing in all Autistic/Asperger's test candidates and they are, if you don't show it, it would be very unlikely that you are. The twin pairs showed clearly that the non-Autistic twins brains were different than the twins with it. That's what they were using to distinguish between them to study phenotype.
For Neurology to have only recently begun to study this, their findings are amazing. They've already dismantled some previously held beliefs. You can thank Pyschiatry for not bothering to ask them for assistance until recently. That's what happens when a brain disorder gets sent off to a "mental disorder" standing.
One thing is for certain, if they are seeing the same thing in all Autistic/Asperger's test candidates and they are, if you don't show it, it would be very unlikely that you are. The twin pairs showed clearly that the non-Autistic twins brains were different than the twins with it. That's what they were using to distinguish between them to study phenotype.
For Neurology to have only recently begun to study this, their findings are amazing. They've already dismantled some previously held beliefs. You can thank Pyschiatry for not bothering to ask them for assistance until recently. That's what happens when a brain disorder gets sent off to a "mental disorder" standing.
Yes, I agree with you 100% on all that. I think we all agree that it's neurologically based. There will be a biologically based diagnosing procedure (hopefully soon) but right now you can't get a diagnosis via a brain scan. You can get a diagnosis and then a brain scan just to see if the brain scan backs up the diagnosis, but right now if you want a diagnosis you're going to have to deal with a psychological exam.
19 Feb 2007, 5:34 am
When I lost the plot a couple of years ago I ended up, for awhile, with regular appointments as regarding my mental health. They concluded that I was DEFINATELY on the Autistic spectrum (previously I was thought to have a Specific Learning Disability - an offshoot of dyslexia - that they had never seen before: I 'slipped through the net' because AS was so unknown and taboo in the late 80s/early 90s) and was likely to have AS.
Having said that they basically said there would be no point in an OFFICIAL diagnosis (I insist in my profile that I am 'diagnosed' though - however indirectly) because it would do me no good. Well, it WOULD provide closure of some sorts. What am I going to if one day I indeed find out I'm an NT?
Life experience and what my mother has read on the subject has helped assure me, on the whole, that I have it and I defy ANYONE who argues otherwise. Until there are doctors and the like in the wards and clinics, who are on the Autistic Spectrum, what do these people REALLY know? Strangers looking from the outside in, as far as I'm concerned.
If that all makes sense...
19 Feb 2007, 7:48 am
Mnemosyne wrote:
ZanneMarie wrote:
I think it is of significant note that all the studies have found differences in the same areas of the brain, including studies of monozygotic twins. Many of them are already going into clinicals. The reason the Neurophyschologists are using it is because they have openly admitted that their diagnostic techniques are lacking. They know they are going to have to get to concrete facts.
One thing is for certain, if they are seeing the same thing in all Autistic/Asperger's test candidates and they are, if you don't show it, it would be very unlikely that you are. The twin pairs showed clearly that the non-Autistic twins brains were different than the twins with it. That's what they were using to distinguish between them to study phenotype.
For Neurology to have only recently begun to study this, their findings are amazing. They've already dismantled some previously held beliefs. You can thank Pyschiatry for not bothering to ask them for assistance until recently. That's what happens when a brain disorder gets sent off to a "mental disorder" standing.
One thing is for certain, if they are seeing the same thing in all Autistic/Asperger's test candidates and they are, if you don't show it, it would be very unlikely that you are. The twin pairs showed clearly that the non-Autistic twins brains were different than the twins with it. That's what they were using to distinguish between them to study phenotype.
For Neurology to have only recently begun to study this, their findings are amazing. They've already dismantled some previously held beliefs. You can thank Pyschiatry for not bothering to ask them for assistance until recently. That's what happens when a brain disorder gets sent off to a "mental disorder" standing.
Yes, I agree with you 100% on all that. I think we all agree that it's neurologically based. There will be a biologically based diagnosing procedure (hopefully soon) but right now you can't get a diagnosis via a brain scan. You can get a diagnosis and then a brain scan just to see if the brain scan backs up the diagnosis, but right now if you want a diagnosis you're going to have to deal with a psychological exam.
Actually, they would let the Neurologist do it, just like they do a Pediatrician. They seem to let anyone do it with the DSM IV which seems kind of strange.
19 Feb 2007, 8:09 am
ARW_AS wrote:
When I lost the plot a couple of years ago I ended up, for awhile, with regular appointments as regarding my mental health. They concluded that I was DEFINATELY on the Autistic spectrum (previously I was thought to have a Specific Learning Disability - an offshoot of dyslexia - that they had never seen before: I 'slipped through the net' because AS was so unknown and taboo in the late 80s/early 90s) and was likely to have AS.
Having said that they basically said there would be no point in an OFFICIAL diagnosis (I insist in my profile that I am 'diagnosed' though - however indirectly) because it would do me no good. Well, it WOULD provide closure of some sorts. What am I going to if one day I indeed find out I'm an NT?
Life experience and what my mother has read on the subject has helped assure me, on the whole, that I have it and I defy ANYONE who argues otherwise. Until there are doctors and the like in the wards and clinics, who are on the Autistic Spectrum, what do these people REALLY know? Strangers looking from the outside in, as far as I'm concerned.
If that all makes sense...
Having said that they basically said there would be no point in an OFFICIAL diagnosis (I insist in my profile that I am 'diagnosed' though - however indirectly) because it would do me no good. Well, it WOULD provide closure of some sorts. What am I going to if one day I indeed find out I'm an NT?
Life experience and what my mother has read on the subject has helped assure me, on the whole, that I have it and I defy ANYONE who argues otherwise. Until there are doctors and the like in the wards and clinics, who are on the Autistic Spectrum, what do these people REALLY know? Strangers looking from the outside in, as far as I'm concerned.
If that all makes sense...
I used to always lose the plot! Are you a writer? I used to have to keep writing and not stop or I would lose the plot. As a result, I wouldn't stop for school, sleeping or eating. Then, I started to train my brain to stop. I would stop for a couple of seconds and find I could hold it that long. Then, I would go a minute and so on. Now, I can hold the plot for years.
You thought that was a Psychiatric issue or you thought it was memory? Had you ever had it happen before? For me, the plot is like a movie playing in my mind. It was like I couldn't find the off and on switch. The forward and rewind. Did you know that Temple Grandin also sees things like movies playing in her head and also learned how to turn them on and off at will?
My problem with NT observation is really just this. Go watch the video of Vernon Smith's interview on Youtube. His wife talks about it. If she asks him how he feels? He says, What? I feel nothing. If she asks what he is thinking, he says, "I'm not thinking about anything. She said you only get a response if you ask what he is doing. So, she still wouldn't know why. Based on that she couldn't decipher why he is doing that as opposed to something else. It's like seeing an action without an explanation. And, too many of us, especially older ones, play the NT game by rote. We know by now what they want to hear and we tell them to get them to go away. Or, we never learned it and they ask, Why did you do that and we respond, I don't know. We already know they won't accept the answer, so why bother? And while one child will scream around lights and sound and say, It hurts! Another might just say, I don't know.
This is why AS is so many times misdiagnosed for things like Schizoid Personality. How did that make you feel when they teased you? It didn't make me feel anything. Why did you kick John? I don't know. Didn't you know it would hurt? Blank stare. That may seem like a complete disconnect with humans and make them Schizoid. But, if you asked what the person did, they went away and cried. Why did you cry? I didn't like it or I'm stupid. The answers can become so varied that if the person doesn't know what he or she is looking for in every case (and how is that ever possible?), it's hit or miss at best. The tests are also inconsistent and much of what you read says they can give different outcomes. That is especially unsettling for an Aspie.
19 Feb 2007, 6:53 pm
ZanneMarie wrote:
Graelwyn wrote:
I am seeking a formal diagnosis because for 1, my parents will not believe my issues are down to AS without that, if that is even enough for them, and at present, I still need their assistance, and am tired of being called lazy among other things.
For 2, I think it is too easy to self diagnose...no offence meant, but anyone can go and look at a list of traits, and decide even on a flimsy basis that they must be AS. Yet, there are many other disorders and syndromes that mimic AS in various ways, such as avoidant personality disorder, Schizoid personality disorder etc etc. Having said that, one Psych might diagnose an individual with one thing, while another might decide on another thing, so even the damn diagnosis might be based on the subjective beliefs of the psychiatist.
But really, without that solid, on paper diagnosis, I will not fully believe I have it, no matter how many of the traits I fit, no matter how familiar the autobiographical accounts are etc etc. I need solid, irrefutable evidence...or what for me would be more irrefutable than my own self diagnosis. Okay, I am sure I have mispelt irrefutable, it looks wrong, lol.
But anyway... I am trying to get on the list to be Dx'd at CLASS by Baren Cohen's team. Annoying it needs a parent with you, but still.
For 2, I think it is too easy to self diagnose...no offence meant, but anyone can go and look at a list of traits, and decide even on a flimsy basis that they must be AS. Yet, there are many other disorders and syndromes that mimic AS in various ways, such as avoidant personality disorder, Schizoid personality disorder etc etc. Having said that, one Psych might diagnose an individual with one thing, while another might decide on another thing, so even the damn diagnosis might be based on the subjective beliefs of the psychiatist.
But really, without that solid, on paper diagnosis, I will not fully believe I have it, no matter how many of the traits I fit, no matter how familiar the autobiographical accounts are etc etc. I need solid, irrefutable evidence...or what for me would be more irrefutable than my own self diagnosis. Okay, I am sure I have mispelt irrefutable, it looks wrong, lol.
But anyway... I am trying to get on the list to be Dx'd at CLASS by Baren Cohen's team. Annoying it needs a parent with you, but still.
Go to a Neurologist and get a fMRI. They can't argue with a MRI. And let them try to argue with the Neurologist. Guaranteed that he or she will not put up with your parents saying the MRI lied. They are a pretty ego-centric bunch who don't suffer fools lightly.
I have zero use for Psychiatric diagnosis. There would be no point to me getting that since anything they say is subjective and not scientific. It's a brain disorder. I'd only trust a Neurologist to tell me what is physically happening in my brain, not some shrink who wants to tell me what they "see" and "think." Yeah. That's real concrete.
Just make sure you for you, Graelwyn, that you are comfortable with whoever gives the diagnosis and you feel your parent's will believe them. Remember it's about you.
Until the price of an fMRI scan lessens, this will not be used for most diagnoses. They're too expensive.
Btw, what clinical trials are you refering to on the fMRIs? I'd like to read the papers if you have the info.
_________________
My Science blog, Science Over a Cuppa - http://insolemexumbra.wordpress.com/
My partner's autism science blog, Cortical Chauvinism - http://corticalchauvinism.wordpress.com/
19 Feb 2007, 10:00 pm
Your insurance should cover an fMRI if a Neurologist orders it. I have no idea what they would do if a Psychiatrist tried to order one. But, your Psychiatrist should be able to contact a Neurologist to consult and order one. They should pay for it then. You'd just have to read your policy to see what's covered or get the doctor's office to call your insurance company and ask.
Here's a trial. http://clinicaltrials.gov/ct/show/NCT00211783?order=22
This one seems more pharmacological in nature: http://clinicaltrials.gov/ct/show/NCT00263796?order=31
http://clinicaltrials.gov/ct/show/NCT00245778?order=38
Here's where they are broadening out to Diffusion Tensor Imaging. I've seen other studies that used this with fMRI and PET. http://clinicaltrials.gov/ct/show/NCT00382382?order=12
I think the reason you are seeing them so specified in what they are looking at is to break it down so they know what they are actually seeing on the images for each test. Once they can isolate that, they'll have a better imaging tool. It's like the current Psychiatric tests where they keep tweaking them to improve them. They will always keep looking at fMRI and other things to improve them or find a different and better imaging system. And, like with migraines, for example, the further they go, the more they find out and the more they find out what they didn't know. It doesn't rule out previous diagnosis using the old method, but all Science seeks to improve on the current. That's the nature of it.
I'll try to look up more later. I need to go back and write. I think those are all federally funded clinicals by the way. There will also be privately funded clinicals.
20 Feb 2007, 6:08 pm
ZanneMarie wrote:
ARW_AS wrote:
When I lost the plot a couple of years ago I ended up, for awhile, with regular appointments as regarding my mental health. They concluded that I was DEFINATELY on the Autistic spectrum (previously I was thought to have a Specific Learning Disability - an offshoot of dyslexia - that they had never seen before: I 'slipped through the net' because AS was so unknown and taboo in the late 80s/early 90s) and was likely to have AS.
Having said that they basically said there would be no point in an OFFICIAL diagnosis (I insist in my profile that I am 'diagnosed' though - however indirectly) because it would do me no good. Well, it WOULD provide closure of some sorts. What am I going to if one day I indeed find out I'm an NT?
Life experience and what my mother has read on the subject has helped assure me, on the whole, that I have it and I defy ANYONE who argues otherwise. Until there are doctors and the like in the wards and clinics, who are on the Autistic Spectrum, what do these people REALLY know? Strangers looking from the outside in, as far as I'm concerned.
If that all makes sense...
Having said that they basically said there would be no point in an OFFICIAL diagnosis (I insist in my profile that I am 'diagnosed' though - however indirectly) because it would do me no good. Well, it WOULD provide closure of some sorts. What am I going to if one day I indeed find out I'm an NT?
Life experience and what my mother has read on the subject has helped assure me, on the whole, that I have it and I defy ANYONE who argues otherwise. Until there are doctors and the like in the wards and clinics, who are on the Autistic Spectrum, what do these people REALLY know? Strangers looking from the outside in, as far as I'm concerned.
If that all makes sense...
I used to always lose the plot! Are you a writer? I used to have to keep writing and not stop or I would lose the plot. As a result, I wouldn't stop for school, sleeping or eating. Then, I started to train my brain to stop. I would stop for a couple of seconds and find I could hold it that long. Then, I would go a minute and so on. Now, I can hold the plot for years.
You thought that was a Psychiatric issue or you thought it was memory? Had you ever had it happen before? For me, the plot is like a movie playing in my mind. It was like I couldn't find the off and on switch. The forward and rewind. Did you know that Temple Grandin also sees things like movies playing in her head and also learned how to turn them on and off at will?
My problem with NT observation is really just this. Go watch the video of Vernon Smith's interview on Youtube. His wife talks about it. If she asks him how he feels? He says, What? I feel nothing. If she asks what he is thinking, he says, "I'm not thinking about anything. She said you only get a response if you ask what he is doing. So, she still wouldn't know why. Based on that she couldn't decipher why he is doing that as opposed to something else. It's like seeing an action without an explanation. And, too many of us, especially older ones, play the NT game by rote. We know by now what they want to hear and we tell them to get them to go away. Or, we never learned it and they ask, Why did you do that and we respond, I don't know. We already know they won't accept the answer, so why bother? And while one child will scream around lights and sound and say, It hurts! Another might just say, I don't know.
This is why AS is so many times misdiagnosed for things like Schizoid Personality. How did that make you feel when they teased you? It didn't make me feel anything. Why did you kick John? I don't know. Didn't you know it would hurt? Blank stare. That may seem like a complete disconnect with humans and make them Schizoid. But, if you asked what the person did, they went away and cried. Why did you cry? I didn't like it or I'm stupid. The answers can become so varied that if the person doesn't know what he or she is looking for in every case (and how is that ever possible?), it's hit or miss at best. The tests are also inconsistent and much of what you read says they can give different outcomes. That is especially unsettling for an Aspie.
_____________________________________________________________________________
Heh, I WISH I WAS a writer. The problem probably is the fact I don't write ENOUGH down.
For me, 'losing the plot' is a figure of speech similar to 'losing your marbles'...
A bit of both, probably more the former than anything else to be honest. I was on medication during my exams, you see: that, the stress, and the fact my poor mother accidentally mixed this medication with herbal sleeping pills, sent me over the edge so to speak.
It's has happened more than once, but that time I just described was a one-off in its severity.
Temple Grandin? Wikipedia that later...
Thanks for taking notice by the way (that incident that I'm not willing to elaborate on is described in quite some detail in a thread I done AGES ago).
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