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Nesf

Constant post-diagnosis worry

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Nesf

I have an official diagnosis, but I worry about it a lot and have quite frequent feelings of paranoia, because my diagnosis didn't follow the same procedure as it did for nearly everyone else. I was just given an interview with a neuropsychiatrist where I was asked a lot of questions, my mum was asked some questions, and about 20 minutes in he said that he felt I had Asperger's syndrome, and at the end I was told my diagnosis. No tests, no further appointments, nothing. Can he really know that I have AS after 20 minutes? I don't understand why I wasn't asked back for further testing or appointments, I thought that they needed to test people before giving a diagnosis.

 

Also, I read a lot on forums and see that other people are different to me or have difficulty with some things that I don't have trouble with or have a specific trait that I don't have, or that I work, have a relationship and am too independent to be diagnosed, I'm too 'normal' or function too well, then I start to worry that I might not really have AS, and that others on the forum might think that I don't really have it and that I shouldn't really be here at all. I have a lot of such paranoid thoughts. I know that people with ASD are all different, but that doesn't stop me worrying. Most people worry about whether they have ASD before their diagnosis, but I'm worrying about it after my diagnosis. Does anyone have any advice on what I can do to be reassured and stop worrying? Does anyone else feel this way?

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No Longer Here

My diagnosis was the same. A 1 hour interview with my wife present. I was asked various questions and I was given the diagnosis at the end. A written report followed. Let's face it, if someone really know ASD and what questions to ask Asperger's would be pretty obvious

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Echo

In a word, yes. I was worried before my diagnosis and yes, I am worried about it now; for the same reasons that you posted above, plus a few others relating to family, friends etc.

 

My perception of myself and the world around me has changed and I'm finding it hard to figure out who I am in relation to this relatively new information. I am mostly positive about my diagnosis, but I'm trying not to be too militant about my "aspiness" :) as I don't think that many others whom I've spoken to believe that I have the diagnosis or that it is correct. They'd rather say that I am weird rather than admit that there's anything "wrong" (not my words) with me and believe that doctors label everyone with "made up diseases" (again, not my words).  

 

I thought that I'd be used to it by now, the diagnosis, but although I'm happy to have it, it explains a lot, I also don't feel as if the way I was diagnosed reflects others experiences. I don't feel as if some of the traits apply to me; the triad of impairments, R&R's and SPD, seem to affect me to a lesser degree than most Aspies, generally, but not when I'm anxious/stressed/depressed. However, even to a lesser degree, they are still pervasive and have both a positive and detrimental influence on my life. 

 

My diagnostic experience was long fought for (over two and a half years) and a long process in itself (took over two months with 2hr sessions every week). I did not have a parent with me, although I was able to gather the required information and had my partner in toe. I was interviewed by a psychiatrist and two educational psychologists before being referred to another for the actual long assessment. It consisted of many different types of questionnaires, tasks, AQ, EQ and IQ tests; despite having done all these before going.

 

The whole process was thorough, but I don't believe that anyone involved was an expert in the field of autism and especially not female Aspergers. This is why I question the validity of the assessments conclusion. However, I know, through years of research that I am an aspie, whether others, excluding psychologists etc. want to believe me. Others negative comments about my disclosure, especially if I'm already feeling sh*tty, influences how I feel about my diagnosis on certain days and I get really paranoid about what others think. I also get people responding too positively about my disclosure and treat me as if I'm a low-functioning (for lack of a better term) child. However, that's another story. 

 

Perhaps concentrating too hard on the small details makes us miss the bigger picture? If the triad of impairments, our rituals and routines and sensory difficulties prevent us from fulfilling certain aspects in our lives or are taking over some aspects of our lives (in a way that is completely out of our control, whether positive or negative depending on your point of view and the differing P.O.V of others) then that is because we are autistic.    

 

I wish I could offer some advice, but I'm afraid that I'm in a similar situation to you at the moment. If I find something that could provide some comfort, and is helpful in a practical way, I'll gladly share it with you friend :) 

 

Regarding your diagnostic process, perhaps the assessor in your case was an expert in the field? Having seen so many people over so many years, he/she knew "on sight" as soon as you walked into the room that you are an aspie? Since my diagnosis, I have since met many people who instantly recognise me as an aspie, without having told them (not knowing my personal details at all) or met them before. 

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not around here anymore

I had moments throughout the diagnosis process where I felt that perhaps I don't have AS and that still happens now sometimes, even though I have been diagnosed. I recall you posting something previously where you mentioned that you don't get all the "main" symptoms of AS, like meltdowns for example. Others experience this too. I very rarely have what I would describe as a "meltdown". Sure, I have times where I feel really stressed and anxious, and like I cannot cope, but not to the point where I am inconsolable until I feel better naturally, which is what I would describe as a meltdown.

 

Regarding the forum, I think I can speak for other members when I say that the way we see you will not change regardless of whether or not you have AS. You are well liked and respected, so even if (and I stress the if) it turns out you don't have AS, you would still be more than welcome to be on this forum. It would be a shame to see you leave. Also, I recall another member who posted that they don't actually have AS and they are still regularly on here and I see no problem with that at all. I am sure other members feel the same way.

 

Paranoia is common amongst people on the spectrum. We worry people don't like us, about what other people may think of us, whether or not we have AS etc. Do not feel like you are strange for feeling this way. It is perfectly natural for someone on the spectrum to feel paranoid about things. I am not for one minute saying it is a good thing, of course not, but what I am saying is that a lot of us on the spectrum experience such a thing.

 

I hope what other members and myself have said will help  :)

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No Longer Here

I'm regards to post diagnosis it took me about a year to fully understand any implications. As I have posted elsewhere CBT helped me sort out the Anxiety side of it. As soon as I retired from full time work and decided to live the rest of my life using the gifts it gives me I became mostly content. There are still people who don't get me and those who let me down. I am slowly weeding these people from my life and moving forward.

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not around here anymore

I'm regards to post diagnosis it took me about a year to fully understand any implications. As I have posted elsewhere CBT helped me sort out the Anxiety side of it. As soon as I retired from full time work and decided to live the rest of my life using the gifts it gives me I became mostly content. There are still people who don't get me and those who let me down. I am slowly weeding these people from my life and moving forward.

There are too many people who are like that.

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mysti

I'm being assessed for Aspergers at one of the most well known & most respected clinics in the UK & they don't do anything more than a discussion/interview to make a diagnosis - no extra tests or anything like that. I believe this is because the people who work there really know know their stuff & don't need to rely on the outcomes of various tests to back up their interview findings. I hope that reassures you a bit :)

And with regard to feeling like you're not like other Aspies/Auties, I'd imagine everyone feels like that to some extent because we're all different. I know I do.

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Whoknows

Well, my diag was strange, too. I was playing spy, but I do remember answering questions about my family and my life. What I don't know is how much time it took.

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RiRi

I agree with what others have said, maybe the person who diagnosed you knew a lot about autism and their experience allowed them to make a diagnosis in the amount of time that yours was made. I think you have AS. I think you resemble me a lot. To name some examples, we struggle choosing between two words when writing. When answering a question that may be a yes or no answer, we're inclined to answer in a way that is accurate and honest instead of a simple yes or no. We can't really hide our emotions, if we're feeling sad or upset, it will show and we might not be as polite as we could have been. I know that these aren't the main AS symptoms, but I thought I should mention them.
 
As for AS symptoms from what I can recall, we struggle with feeling a connection with others, we don't feel like we ever connect with others the way it seems other people do. We had have restrictive interests which resulted in not being interested as a whole with other interests, just some, to name one, it would be playing video games. We struggle with perceiving how another person might be feeling. We stim. We can be hypersensitive, both emotionally and physically. That is just some I can remember, forgive me if I remembered something incorrectly, but I have always felt that we are similar. I think you have AS, but if for whatever case you don't, I agree with Phil that you are a respected member on this forum, we like you, and you are welcome here.  :)

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RiRi

I thought that I'd be used to it by now, the diagnosis, but although I'm happy to have it, it explains a lot, I also don't feel as if the way I was diagnosed reflects others experiences. I don't feel as if some of the traits apply to me; the triad of impairments, R&R's and SPD, seem to affect me to a lesser degree than most Aspies, generally, but not when I'm anxious/stressed/depressed. However, even to a lesser degree, they are still pervasive and have both a positive and detrimental influence on my life.

I know SPD stands for sensory processing disorder, but what is R&R?

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Echo

I know SPD stands for sensory processing disorder, but what is R&R?

Routines and Rituals :)

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RiRi

Routines and Rituals :)

Thanks :)

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Nesf

Thank you for all of your replies. They helped a lot, and I now feel more reassured. I think that those who pointed out that someone who is an expert in their field will know very quickly if a person has ASD or not and will know which questions to ask are right, the psychiatrist who assessed me was able to gather the information he needed and make the diagnosis without the need of extra cognitive tests or interviews.  It must show (to him, at least) that I have ASD, and I just don't realise that it shows.

 

 

Perhaps concentrating too hard on the small details makes us miss the bigger picture? If the triad of impairments, our rituals and routines and sensory difficulties prevent us from fulfilling certain aspects in our lives or are taking over some aspects of our lives (in a way that is completely out of our control, whether positive or negative depending on your point of view and the differing P.O.V of others) then that is because we are autistic.    

Yes, I think you are right - I'm focusing too much on the small details and losing sight of the big picture of my ASD traits as a whole and what lead to my diagnosis. I have most of the traits, both now and as a child, and they affect my life in various ways. It makes sense that I have AS, and these thoughts and worries I've been having are paranoia, they are illogical, probably the result of increased stress and depression I've been having recently. I think it might help to write out a list all the symptoms and reasons which lead me to understand I have AS in the first place, in order not to lose sight of the big picture.

 

 

I had moments throughout the diagnosis process where I felt that perhaps I don't have AS and that still happens now sometimes, even though I have been diagnosed. I recall you posting something previously where you mentioned that you don't get all the "main" symptoms of AS, like meltdowns for example. Others experience this too. I very rarely have what I would describe as a "meltdown". Sure, I have times where I feel really stressed and anxious, and like I cannot cope, but not to the point where I am inconsolable until I feel better naturally, which is what I would describe as a meltdown.

 

Regarding the forum, I think I can speak for other members when I say that the way we see you will not change regardless of whether or not you have AS. You are well liked and respected, so even if (and I stress the if) it turns out you don't have AS, you would still be more than welcome to be on this forum. It would be a shame to see you leave. Also, I recall another member who posted that they don't actually have AS and they are still regularly on here and I see no problem with that at all. I am sure other members feel the same way.

 

Paranoia is common amongst people on the spectrum. We worry people don't like us, about what other people may think of us, whether or not we have AS etc. Do not feel like you are strange for feeling this way. It is perfectly natural for someone on the spectrum to feel paranoid about things. I am not for one minute saying it is a good thing, of course not, but what I am saying is that a lot of us on the spectrum experience such a thing.

 

I hope what other members and myself have said will help  :)

Actually, I get meltdowns, that is one trait that I do have - I think I mentioned that I rarely get panic attacks and I don't have such severe sensory issues as some other people. Some people have mentioned that they have shutdowns due to sensory overload where they stop processing at all and completely black out, and don't get that - I find that I just blank out for a few seconds and don't process all the information and don't understand things I hear, or don't take in what I see and the information all jumbles up, I don't black out and lose consciousness due to overload. Also, I'm not talkative and don't talk a lot about my special interests, I'm aloof, keep myself to myself and don't talk much to others or share interests, and I'm not super-intelligent.

 

 

I'm regards to post diagnosis it took me about a year to fully understand any implications. As I have posted elsewhere CBT helped me sort out the Anxiety side of it. As soon as I retired from full time work and decided to live the rest of my life using the gifts it gives me I became mostly content. There are still people who don't get me and those who let me down. I am slowly weeding these people from my life and moving forward.

For me it's been 3 years, and I feel like I'm still processing it.

 

 

Well, my diag was strange, too. I was playing spy, but I do remember answering questions about my family and my life. What I don't know is how much time it took.

What do you mean by "playing spy"?

 

I agree with what others have said, maybe the person who diagnosed you knew a lot about autism and their experience allowed them to make a diagnosis in the amount of time that yours was made. I think you have AS. I think you resemble me a lot. To name some examples, we struggle choosing between two words when writing. When answering a question that may be a yes or no answer, we're inclined to answer in a way that is accurate and honest instead of a simple yes or no. We can't really hide our emotions, if we're feeling sad or upset, it will show and we might not be as polite as we could have been. I know that these aren't the main AS symptoms, but I thought I should mention them.
 
As for AS symptoms from what I can recall, we struggle with feeling a connection with others, we don't feel like we ever connect with others the way it seems other people do. We had have restrictive interests which resulted in not being interested as a whole with other interests, just some, to name one, it would be playing video games. We struggle with perceiving how another person might be feeling. We stim. We can be hypersensitive, both emotionally and physically. That is just some I can remember, forgive me if I remembered something incorrectly, but I have always felt that we are similar. I think you have AS, but if for whatever case you don't, I agree with Phil that you are a respected member on this forum, we like you, and you are welcome here.  :)

Yes, I've also noticed that we seem to share quite a lot of common traits, and we are similar in many ways, hypersensitivity, not being able to connect to others and finding it hard to hide emotions in order to be polite, restricted interests, these things affect me a lot in my life.

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not around here anymore

Actually, I get meltdowns, that is one trait that I do have - I think I mentioned that I rarely get panic attacks and I don't have such severe sensory issues as some other people. Some people have mentioned that they have shutdowns due to sensory overload where they stop processing at all and completely black out, and don't get that - I find that I just blank out for a few seconds and don't process all the information and don't understand things I hear, or don't take in what I see and the information all jumbles up, I don't black out and lose consciousness due to overload. Also, I'm not talkative and don't talk a lot about my special interests, I'm aloof, keep myself to myself and don't talk much to others or share interests, and I'm not super-intelligent.

Ah yes, panic attacks and shutting down. I knew there was something which neither of us tend to suffer from. I do get meltdowns, but not on the scale which many others on the spectrum would get. I guess it depends on how you define a meltdown. Perhaps some people would think that I do, and others may think that I don't. I'm a complex soul  :P  :lol:

 

Not everyone on the spectrum is talkative. Many people on the spectrum don't talk very much at all and are very shy. You describe yourself as "aloof". This is a common description of someone on the spectrum, so that adds merit to your diagnosis, rather than challenging it. Many people on the spectrum prefer to spend time alone and keep themselves to themselves, and therefore they don't talk much too others. I wouldn't describe myself as super-intelligent. I think the whole "people on the spectrum being geniuses" is such a stereotype. Of course there are people on the spectrum who are highly intelligent, but there are also people not on the spectrum with high intelligence. I think one reason this stereotype is so widely believed is because a lot of the examples of famous people on the spectrum or possibly on the spectrum are or were people with high intelligence. That would then lead people to think everyone with autism must be highly intelligent, due to this world being so keen to think a group of people must all be the same because of a handful of them.

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RiRi

Thank you for all of your replies. They helped a lot, and I now feel more reassured. I think that those who pointed out that someone who is an expert in their field will know very quickly if a person has ASD or not and will know which questions to ask are right, the psychiatrist who assessed me was able to gather the information he needed and make the diagnosis without the need of extra cognitive tests or interviews.  It must show (to him, at least) that I have ASD, and I just don't realise that it shows.

 

Actually, I get meltdowns, that is one trait that I do have - I think I mentioned that I rarely get panic attacks and I don't have such severe sensory issues as some other people. Some people have mentioned that they have shutdowns due to sensory overload where they stop processing at all and completely black out, and don't get that - I find that I just blank out for a few seconds and don't process all the information and don't understand things I hear, or don't take in what I see and the information all jumbles up, I don't black out and lose consciousness due to overload. Also, I'm not talkative and don't talk a lot about my special interests, I'm aloof, keep myself to myself and don't talk much to others or share interests, and I'm not super-intelligent.

 

Yes, I've also noticed that we seem to share quite a lot of common traits, and we are similar in many ways, hypersensitivity, not being able to connect to others and finding it hard to hide emotions in order to be polite, restricted interests, these things affect me a lot in my life.

No problem. :) 

 

Regarding the shutdowns, that how I would describe my shut downs, I blank out and don't want to talk for the time being. I don't black out either or become unconscious. I think perhaps our shut downs are less severe? Or maybe we don't have them? I don't get panic attacks too often, at some point, when I joined the forum, I was referring to anxiety attacks as panic attacks as I thought they were the same thing, but when you pointed them out one time, I realized they were not the same thing. I'm not sure, but maybe some people have referred to anxiety attacks as panic attacks. I do get panic attacks and the way I would describe them is that I'm doing something and I suddenly have a frightening feeling, but it goes away after a while. Edit: I'm one of those aspies that keeps a lot to themselves as well. Maybe it's just a stereotype, but I can say that at least the majority if not all the people on this forum are intelligent/highly intelligent.

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TheWizardofCalculus

 

I have an official diagnosis, but I worry about it a lot and have quite frequent feelings of paranoia, because my diagnosis didn't follow the same procedure as it did for nearly everyone else. I was just given an interview with a neuropsychiatrist where I was asked a lot of questions, my mum was asked some questions, and about 20 minutes in he said that he felt I had Asperger's syndrome, and at the end I was told my diagnosis. No tests, no further appointments, nothing. Can he really know that I have AS after 20 minutes? I don't understand why I wasn't asked back for further testing or appointments, I thought that they needed to test people before giving a diagnosis.

 

Also, I read a lot on forums and see that other people are different to me or have difficulty with some things that I don't have trouble with or have a specific trait that I don't have, or that I work, have a relationship and am too independent to be diagnosed, I'm too 'normal' or function too well, then I start to worry that I might not really have AS, and that others on the forum might think that I don't really have it and that I shouldn't really be here at all. I have a lot of such paranoid thoughts. I know that people with ASD are all different, but that doesn't stop me worrying. Most people worry about whether they have ASD before their diagnosis, but I'm worrying about it after my diagnosis. Does anyone have any advice on what I can do to be reassured and stop worrying? Does anyone else feel this way?

 

1.) At moments like these, I think it's worth reiterating that there is a part of all diagnoses that are socially constructed.  At some level, all diagnoses are is a group of people who agreed that they'd call a cluster of symptoms X, and while certain things (like viruses and bacterium) are rooted very concretely in empirical facts of the matter and thus there's an undisputed reason to classify and objectively determine what X is.  But mental conditions are not well-understood at a biochemical level.  So the objective facts of the matter, or at least our best facsimile of them, pertain to whether or not you feel different than other people and how that's impacted your life.  Insofar as a diagnosis is concerned, that's really all that matters.

 

2.) I do not have an official diagnosis, but I went through this procedure myself before I stopped bothering to go to my old psychologist.  Basically, after two sessions, he agreed that I seemed to fulfill the basic criterion, but under my HMO I would have needed to have gone through a rather large amount of testing before I could get an official diagnosis.

 

3.) I think in general, people who think they have ASD begin to feel very differently about things when/after they start interacting with medical professionals. There's a general narrative in society that autism/Asperger's means some form of serious disability and other things, and that perspective (the medical model) is extremely prevalent amongst medical practitioners, so it creates a rather bizarre dynamic that can go two ways, one of which is that the medical professional is profoundly skeptical of all claims to have ASD/AS and the other is a perception that medical practitioners are too lenient on diagnoses.  I think the reality is that lenient diagnoses are probably not nearly as lenient as people think (they are medical professionals, and largely will act accordingly).  But mostly, after people get the diagnosis, it becomes very "real."  And that's difficult to process, because people think that it means a lot about themselves, when in fact nothing about themselves has changed.

 

 

My perception of myself and the world around me has changed and I'm finding it hard to figure out who I am in relation to this relatively new information. I am mostly positive about my diagnosis, but I'm trying not to be too militant about my "aspiness" :) as I don't think that many others whom I've spoken to believe that I have the diagnosis or that it is correct. They'd rather say that I am weird rather than admit that there's anything "wrong" (not my words) with me and believe that doctors label everyone with "made up diseases" (again, not my words). 

 

Not to steer the conversation off course, but I think this is an important point and it's worth repeating many times over again. This is basically a form of ableism that pretty much everyone in the community has internalized during any attempt to get a diagnosis or at any point when they summon enough courage to tell friends.  The narrative goes like this:

 

"All autism is severe, so there is no moderate or mild autism.  Thus, people with autism are necessarily severely dysfunctional, and thus autism is an invalid neurotype and is a mental illness.  Never mind what the DSM says, when they say 'mild autism', they really mean 'mild for this severe condition', so don't let that confuse you."

 

This then does two things.  Firstly, it makes people with actual severe autism believe that they are invalid and unacceptable, which they internalize to disturbing effect (Again, read almost any thread on WrongPlanet).  So a lot of people internalize the notion that they cannot do [X], and then they never do [X] (Have a long term partner, hold a job, etc).

 

Secondly, it delegitimizes mild autism and relegates them to people who don't have legitimate problems.  Often times, this is done with a bizarrely pseudo-acceptance-like reasoning, e.g. "There's nothing wrong with you, you're just quirky and we shouldn't pathologize quirkiness."  It's a winner-takes-all approach to autistic issues, only the people with the most severe issues "count."

 

Therefore, people with mild autism internalize ableism in a different way.  The direct corollary to the above is that people with mild autism do not face real or significant problems and so they should stop pretending to be autistic, which they then internalize as the idea that they're fakers or complainers (If they hadn't internalized it long ago).  Do I really dare to presume that I have autism?  I mean, after all, I'm not as fucked up as those people.  "Those people", of course, are the few people with which they share a great deal in common.  Then anything that could be interpreted to comport with the narrative immediately turns into self-fulfilling evidence for the narrative --Oh, you mean you don't have shut downs?  Faker!  Oh, wait, I don't have SPD all of the time?  Whiner!  Wait, you don't stim frequently?  Well, I guess you must just have special-snowflake syndrome then, because you obviously aren't autistic!  And so on.

 

In other words, it becomes a tangled web of illogical reasoning where you can't win unless you've already lost: "You don't have a specific trait of autism?" => "You can't have autism", however "You do have problems sometimes with X?" => "Oh, well, you don't have them severely enough!"

 

So that's the result of the narrative.  Why is it that people have concocted this narrative?  It seems to be genuinely hard for people to simultaneously think of someone as being "different" and being a "person" --and we're all guilty of this.  It's why many people still get weird around LGBT persons (particularly trans people nowadays).  They don't know how to make their worldview line up with this new information, so it's simply easier to deny it.  People really hate examining their biases or admitting that they might unintentionally have bigoted beliefs.  Additionally, they might have to reevaluate their behavior towards autistic people, all of which could be uncomfortable and thus not worth entertaining too seriously.  Additionally, ableism is just a narrative that's persisted in the culture for so long, it's hard for people to think differently because it's all that they know.

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tystie

I think it might help to write out a list all the symptoms and reasons which lead me to understand I have AS in the first place, in order not to lose sight of the big picture.

 

I have two lists to help me out when I'm going through a phase of thinking that I'm being ridiculous to even consider the possibility that I have AS, as is the case at the moment.

 

One is a straightforward list of traits and symptoms that I think are relevant, based purely on the diagnostic criteria. The other is a list of quotes from books, blogs and forums where I come across a few sentences or paragraphs, and think, "Oh wow, was the writer thinking about me personally when they wrote that?" I find the latter list more helpful as nearly everything on it was written by someone who actually has AS. It currently runs to twenty pages but I still keep finding things to add to it.

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Nesf

Ah yes, panic attacks and shutting down. I knew there was something which neither of us tend to suffer from. I do get meltdowns, but not on the scale which many others on the spectrum would get. I guess it depends on how you define a meltdown. Perhaps some people would think that I do, and others may think that I don't. I'm a complex soul  :P  :lol:

 

Not everyone on the spectrum is talkative. Many people on the spectrum don't talk very much at all and are very shy. You describe yourself as "aloof". This is a common description of someone on the spectrum, so that adds merit to your diagnosis, rather than challenging it. Many people on the spectrum prefer to spend time alone and keep themselves to themselves, and therefore they don't talk much too others. I wouldn't describe myself as super-intelligent. I think the whole "people on the spectrum being geniuses" is such a stereotype. Of course there are people on the spectrum who are highly intelligent, but there are also people not on the spectrum with high intelligence. I think one reason this stereotype is so widely believed is because a lot of the examples of famous people on the spectrum or possibly on the spectrum are or were people with high intelligence. That would then lead people to think everyone with autism must be highly intelligent, due to this world being so keen to think a group of people must all be the same because of a handful of them.

Yes, I think that the thing about high intelligence is very much a stereotype, and the media's principal concern is to create sensationalism and to sell, so they create larger than life characters, or highlight the extremes  - we can't all be be savants or maths geniuses, and then people take these and use them as a benchmark for all autistic people, and they then think that if you are in any way different then you can't be autistic.

 

No problem. :) 

 

Regarding the shutdowns, that how I would describe my shut downs, I blank out and don't want to talk for the time being. I don't black out either or become unconscious. I think perhaps our shut downs are less severe? Or maybe we don't have them? I don't get panic attacks too often, at some point, when I joined the forum, I was referring to anxiety attacks as panic attacks as I thought they were the same thing, but when you pointed them out one time, I realized they were not the same thing. I'm not sure, but maybe some people have referred to anxiety attacks as panic attacks. I do get panic attacks and the way I would describe them is that I'm doing something and I suddenly have a frightening feeling, but it goes away after a while. Edit: I'm one of those aspies that keeps a lot to themselves as well. Maybe it's just a stereotype, but I can say that at least the majority if not all the people on this forum are intelligent/highly intelligent.

Yes, I get that a lot when I go out with my partner - I start off talking and conversing with him, and then after a couple of hours I just can't do it anymore, I feel tired and I switch off and withdraw into myself and don't want to talk and I just stare at the surroundings - I'm still processing, but talking is too much. I also have this thing where I just blank out and stop processing when a lot is going on at once, for example, a couple of days ago I was trying to note down a phone number that my partner was telling me to write down while he was on the phone to someone and I couldn't process and understand the number, it was somehow becoming confused and I was missing the numbers and writing down the numbers in the wrong order, so I didn't manage to write the number. I've heard shutdowns being described this way, as you describe them or as a complete blanking out, not processing anything and having a kind of blackout, so now I'm very confused to what a shutdown actually is and I don't know whether what I experience can be called a shutdown or not. The thing with the number could be due to an audio processing delay rather than a shutdown.

 

As for anxiety, I get what you describe quite often, a feeling of dread or fear or frightened feeling that goes away after a bit - if that's a panic attack, then I do get these. I always thought that this was due to stress and anxiety, and that a panic attack was something more serious where you feel dizzy and faint or start hyperventilating and shaking. I have had those on a few occasions, but not very often.

 

1.) At moments like these, I think it's worth reiterating that there is a part of all diagnoses that are socially constructed.  At some level, all diagnoses are is a group of people who agreed that they'd call a cluster of symptoms X, and while certain things (like viruses and bacterium) are rooted very concretely in empirical facts of the matter and thus there's an undisputed reason to classify and objectively determine what X is.  But mental conditions are not well-understood at a biochemical level.  So the objective facts of the matter, or at least our best facsimile of them, pertain to whether or not you feel different than other people and how that's impacted your life.  Insofar as a diagnosis is concerned, that's really all that matters.

 

2.) I do not have an official diagnosis, but I went through this procedure myself before I stopped bothering to go to my old psychologist.  Basically, after two sessions, he agreed that I seemed to fulfill the basic criterion, but under my HMO I would have needed to have gone through a rather large amount of testing before I could get an official diagnosis.

 

3.) I think in general, people who think they have ASD begin to feel very differently about things when/after they start interacting with medical professionals. There's a general narrative in society that autism/Asperger's means some form of serious disability and other things, and that perspective (the medical model) is extremely prevalent amongst medical practitioners, so it creates a rather bizarre dynamic that can go two ways, one of which is that the medical professional is profoundly skeptical of all claims to have ASD/AS and the other is a perception that medical practitioners are too lenient on diagnoses.  I think the reality is that lenient diagnoses are probably not nearly as lenient as people think (they are medical professionals, and largely will act accordingly).  But mostly, after people get the diagnosis, it becomes very "real."  And that's difficult to process, because people think that it means a lot about themselves, when in fact nothing about themselves has changed.

 

 

 

Not to steer the conversation off course, but I think this is an important point and it's worth repeating many times over again. This is basically a form of ableism that pretty much everyone in the community has internalized during any attempt to get a diagnosis or at any point when they summon enough courage to tell friends.  The narrative goes like this:

 

"All autism is severe, so there is no moderate or mild autism.  Thus, people with autism are necessarily severely dysfunctional, and thus autism is an invalid neurotype and is a mental illness.  Never mind what the DSM says, when they say 'mild autism', they really mean 'mild for this severe condition', so don't let that confuse you."

 

This then does two things.  Firstly, it makes people with actual severe autism believe that they are invalid and unacceptable, which they internalize to disturbing effect (Again, read almost any thread on WrongPlanet).  So a lot of people internalize the notion that they cannot do [X], and then they never do [X] (Have a long term partner, hold a job, etc).

 

Secondly, it delegitimizes mild autism and relegates them to people who don't have legitimate problems.  Often times, this is done with a bizarrely pseudo-acceptance-like reasoning, e.g. "There's nothing wrong with you, you're just quirky and we shouldn't pathologize quirkiness."  It's a winner-takes-all approach to autistic issues, only the people with the most severe issues "count."

 

Therefore, people with mild autism internalize ableism in a different way.  The direct corollary to the above is that people with mild autism do not face real or significant problems and so they should stop pretending to be autistic, which they then internalize as the idea that they're fakers or complainers (If they hadn't internalized it long ago).  Do I really dare to presume that I have autism?  I mean, after all, I'm not as fucked up as those people.  "Those people", of course, are the few people with which they share a great deal in common.  Then anything that could be interpreted to comport with the narrative immediately turns into self-fulfilling evidence for the narrative --Oh, you mean you don't have shut downs?  Faker!  Oh, wait, I don't have SPD all of the time?  Whiner!  Wait, you don't stim frequently?  Well, I guess you must just have special-snowflake syndrome then, because you obviously aren't autistic!  And so on.

 

In other words, it becomes a tangled web of illogical reasoning where you can't win unless you've already lost: "You don't have a specific trait of autism?" => "You can't have autism", however "You do have problems sometimes with X?" => "Oh, well, you don't have them severely enough!"

 

So that's the result of the narrative.  Why is it that people have concocted this narrative?  It seems to be genuinely hard for people to simultaneously think of someone as being "different" and being a "person" --and we're all guilty of this.  It's why many people still get weird around LGBT persons (particularly trans people nowadays).  They don't know how to make their worldview line up with this new information, so it's simply easier to deny it.  People really hate examining their biases or admitting that they might unintentionally have bigoted beliefs.  Additionally, they might have to reevaluate their behavior towards autistic people, all of which could be uncomfortable and thus not worth entertaining too seriously.  Additionally, ableism is just a narrative that's persisted in the culture for so long, it's hard for people to think differently because it's all that they know.

Thank you for your very detailed and insightful post. It helped a lot to put things in perspective, and really does pinpoint the issues surrounding diagnosis. I shall keep coming back to this post. 

 

I have two lists to help me out when I'm going through a phase of thinking that I'm being ridiculous to even consider the possibility that I have AS, as is the case at the moment.

 

One is a straightforward list of traits and symptoms that I think are relevant, based purely on the diagnostic criteria. The other is a list of quotes from books, blogs and forums where I come across a few sentences or paragraphs, and think, "Oh wow, was the writer thinking about me personally when they wrote that?" I find the latter list more helpful as nearly everything on it was written by someone who actually has AS. It currently runs to twenty pages but I still keep finding things to add to it.

Yes, lists help a lot to categorise things and keep them in perspective, and they help to piece it all together and get the whole picture. I have some lists too of symptoms, experiences and traits I made to take to my diagnostic interview in order to explain why I consider myself to be on the spectrum. I hope your interview goes well and that you get your diagnosis :)

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RiRi

Yes, I get that a lot when I go out with my partner - I start off talking and conversing with him, and then after a couple of hours I just can't do it anymore, I feel tired and I switch off and withdraw into myself and don't want to talk and I just stare at the surroundings - I'm still processing, but talking is too much. I also have this thing where I just blank out and stop processing when a lot is going on at once, for example, a couple of days ago I was trying to note down a phone number that my partner was telling me to write down while he was on the phone to someone and I couldn't process and understand the number, it was somehow becoming confused and I was missing the numbers and writing down the numbers in the wrong order, so I didn't manage to write the number. I've heard shutdowns being described this way, as you describe them or as a complete blanking out, not processing anything and having a kind of blackout, so now I'm very confused to what a shutdown actually is and I don't know whether what I experience can be called a shutdown or not. The thing with the number could be due to an audio processing delay rather than a shutdown.

 

As for anxiety, I get what you describe quite often, a feeling of dread or fear or frightened feeling that goes away after a bit - if that's a panic attack, then I do get these. I always thought that this was due to stress and anxiety, and that a panic attack was something more serious where you feel dizzy and faint or start hyperventilating and shaking. I have had those on a few occasions, but not very often.

What you described, to me, sounds like a shutdown, from what I remember it being described. Shutdowns, I think are on the same level as a meltdown, or at least similar where in a meltdown an overload may cause it, a shutdown, an overload may cause it as well. 

 

Yes, I think that's a panic attack, from the definitions I remember, the difference between a panic attack and an anxiety attack is that for panic attack you don't know what caused the frightened feeling, it may just come out randomly while an anxiety attack, you may know what caused it. I know I have and I've had times where my I started shaking, my voice started shaking and I felt my heart pounding really fast, wanting to cry and feeling really scared, but I knew the cause of it so maybe it was severe, but since I knew the cause of it it's called an anxiety attack rather than a panic attack? Based on the definition for anxiety attack that I know the cause of it and for panic attacks, that I don't, I would say that my anxiety attacks have been worse than my panic attacks. I'll have to look into both the shutdowns, anxiety and panic attacks further to be sure.

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Whoknows

 

What do you mean by "playing spy"?

 

 

I hid under the table.

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tern

If enough background info supplied to back up the diagnosis, then it might only take one short session to give the diagnosis. If not, it might take longer to dig out enough info.

Just this week an aspie on Facebook claimed that in England "a formal diagnosis of ASC can not come from a doctor. It has to come from a multi disciplinary team", and that this is set by "NICE guidelines". Does this surprising picture match experiences here? If so, only since how recently?

Assembling a multi disciplinary team every time someone wants diagnosing is so labour intensive surely it would jam up the process and worsen waiting times.

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Nesf

If enough background info supplied to back up the diagnosis, then it might only take one short session to give the diagnosis. If not, it might take longer to dig out enough info.

Just this week an aspie on Facebook claimed that in England "a formal diagnosis of ASC can not come from a doctor. It has to come from a multi disciplinary team", and that this is set by "NICE guidelines". Does this surprising picture match experiences here? If so, only since how recently?

Assembling a multi disciplinary team every time someone wants diagnosing is so labour intensive surely it would jam up the process and worsen waiting times.

Yes, I read that too, and it is one of the reasons I worry about whether the diagnosis is valid or not. But my GP said that the dignosis was valid.

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Echo

If enough background info supplied to back up the diagnosis, then it might only take one short session to give the diagnosis. If not, it might take longer to dig out enough info.

Just this week an aspie on Facebook claimed that in England "a formal diagnosis of ASC can not come from a doctor. It has to come from a multi disciplinary team", and that this is set by "NICE guidelines". Does this surprising picture match experiences here? If so, only since how recently?

Assembling a multi disciplinary team every time someone wants diagnosing is so labour intensive surely it would jam up the process and worsen waiting times.

 

I believe that my assessment matches the multidisciplinary team approach. Overall, I believe that all these appointed people (job titles provided only) were involved in the composition of my concluding report (that's why it took so long after the diagnostic process to receive any notification of the outcome): GP (x2), Educational Psychologists (x12), Appointed members of the community mental health team (x6), Psychiatrists (x4), Appointed members of the LD team - Social Services (x2).

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