Diagnosis or not - does anyone else feel hurt/rejected?

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Aeturnus
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30 Apr 2006, 10:05 pm

Saraswathi wrote:
What's PDD-NOS?


PDD-NOS stands for Pervasive Development Disorder, Not Otherwise Specified. It's usually applied to anyone who has symptoms of a pervasive development disorder that do not fit the criteria of the four known ones.

Saraswathi wrote:
I can understand why you wouldn't want a label that doesn't fit you, it feels dishonest. A friend's son has schizophrenia, and my (non-biological) aunt is suspected of having it, and I don't think I have it. I probably have some things in common with him, but there are several distinct differences in my limited experience. One is that schizophrenia seems to drive people to take part in religion and religious cults, something that has never been an issue for me since I tend to be rather cynical. While I have my own spiritual beliefs, I don't think they mesh entirely with that of any belief system.


Schizophrenia generally involves delusions that people would take as very bizarre. Just going to a religious cult is not even an appropriate way to view it, I think. If someone has an odd belief system, that could very well be insecurity and not much more. There's also these personality disorders, like schizoid and schizotypal, where many people who may have some schizophrenic tendencies live relatively normal but odd lifestyles. True schizophrenia is more or less a miserable and very frightening experience for most, and they usually need medication to get by in the real world.

- Ray M -



Aeturnus
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30 Apr 2006, 10:15 pm

wobbegong wrote:
PDD : Persuasive Development Disorder including Dyslexia, ADHD
PDD-NOS : Persuasive Development Disorder - Not Otherwise Specified; includes Autism and Aspergers


PDD is actually pervasive development disorder, and I didn't know ADHD was a pervasive development disorder. I guess because it's a neurological anomaly usually started at birth, I guess it could be considered. Someone told me it is on the obsessive / compulsive spectrum, though I haven't really heard of that spectrum. Odd, since I have studied a lot of this stuff in the past.

wobbegong wrote:
APD : Antisocial Personality Disorder; sociopath, bullies, abusers


I doubt if antisocial personality disorder is related to Asperger's in most cases. This disorder is potentially serious, because it usually involves criminal activity. Most aspies that I've heard about don't purposely engage themselves in rule-breaking behavior. I suppose that other personality disorders, like schizoid, schizotypal, narcissistic, and obsessive-compulsive, may be more commonly seen as having some traits related to AS, possibly even being diagnosed along with it in some cases. Though I have rarely heard about a personality disorder and AS being diagnosed together. Like, many people with AS could easily fit the profile of people with schizoid or obsessive-compulsive personalities. It's probably useless to diagnose both.

- Ray M -



Saraswathi
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01 May 2006, 1:46 am

Thanks, that's helped answer a few questions. I like the way you put things wobbegong.



danlo
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01 May 2006, 4:21 am

Wobbegong, there are many of us without special interests or perseverations. You don't have to have a special interest to be autistic. Intellectual special interests such as transportation and maths tends to be more in the realm of Aspies, I find.
Perhaps it's just me and my own lack of specialization in a single area, but I'd prefer to be good at almost everything and spectacular at nothing, than to be spectacular at one thing and good at little else.


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Saraswathi
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01 May 2006, 5:07 am

danlo wrote:
Intellectual special interests such as transportation and maths tends to be more in the realm of Aspies, I find.
Perhaps it's just me and my own lack of specialization in a single area, but I'd prefer to be good at almost everything and spectacular at nothing, than to be spectacular at one thing and good at little else.


I'm not sure which category I'd fit into. I enjoy remembering random, obscure facts about a variety of things that most people wouldn't know. They're often useful later on. But I also have obsessional interests from time to time, that I become very driven over. The problem is, they don't usually hang around long enough to do anything constructive with. I usually run up against some kind of obstacle, something I find difficult or irrelevant and boring - and hence frustrating - and the interest fades. Because of that there are few things I see through to completion; it's a major personality flaw.



danlo
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02 May 2006, 4:58 am

It's not necessarily a personality flaw, Saraswathi. There are several reasons why that may happen, and they're not personality flaws at all. As almost any person with depression or executive dysfunction will tell you, they have trouble with that, too. Like I undertook a 12 month traineeship, which has just recently ended, and I kept trying to do this one module that kept getting me hung up and I couldn't do anything past it. I can't do the modules out of sequence, and that one module just kept me kind've like in an infinite loop and nothing got done.


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walk-in-the-rain
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02 May 2006, 11:04 am

Saraswathi wrote:
I wondered about that. I guess I want to have AS, the reason being that logically there has to be some reason for the way I am, and the other options at this stage are looking like a) stupid and b) insane, or a combination of both. There are people here with AS living productively at the moment and are not locked up, so that's definitely looking like the preferential diagnosis to the other two!


LOL! I can understand. I had issues since I was born - according to my parents, so that is why I feel like AS/HFA is a better description than all the other labels I've had. The PDs seem to be more as a person develops. When I was a kid they did not know about AS and I think the criteria for autism was more restrictive. Or at least the stereotype was more prevelant. So, I got labeled as having anxiety disorders, depression, chronic depression, OCD, sensory issues. I had not heard of autism until my son was diagnosed with HFA and I thought that sounded more accurate. I didn't really feel like I fit into the other catagories very well and I figure all the other labels added together seem like it might fit better under AS than all standing alone. However, because of past experiences and medication issues I am leery of having anything to do with another psychiatrist to get a formal diagnosis of AS. I was inclined at one time to try meds again - but the side effects were too much and then I was getting kind of manic of the anti-depressants. Not in a good way either - just fluxuating between really irritated (BPII) and really tired. So, there is some dignity in having a diagnosis of AS but not in being considered mentally ill. Not to insult anyone who has other diagnosis like that but I sure didn't find them complimentary. If anything the threat has been leveled before of getting "help" involuntarily if you know what I mean. A least with ASD there is some consideration that you are able to make your own desicions instead of others making them for you.

However, when I joined this group I really wasn't sure what to put down and that actually stopped me for a while from joining because I couldn't decide :) So, I guess indesicion is another one of my special qualities. I chose Family member with AS (which is really not accurate since my son has HFA) but I think there should be some sort of choice for Parents with AS and relative with AS - or maybe AS family. I was concerned to that I wouldn't fit in since I didn't have a formal diagnosis, but then I found there are those WITH a formal diagnosis who are doing very well and not dealing with some of the more self limiting issues (like sensory ones which I have alot of). Overall - I think if you feel like you fit in than you probably do.



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02 May 2006, 11:13 am

Aeturnus

The context for

APD : bullies - is that it is sometimes mentioned as a quality associated with partners or persecuters of aspies. But some aspies are described as being bullies - if you get perfectionism in combination with Aspergers - you could get a very nasty bully - just like my grandfather in fact. Hypercritical, nobody is ever good enough, and everyone had to play by his rules. He meant well - everyone would be better off if they just did what he said - plausible but wrong. Having only one set of rules and expecting everyone else to follow is very aspie - especially in children. Bullies don't always commit criminal acts or go to jail. Still I don't know if just being a bully is enough to get you the APD label - "bully" was just to help me with the context when people used the TLA unexplained.

And of course
APD : Auditory Processing Disorder is also linked with Aspergers, but has nothing to do with bullies.

I got both contexts from aspie forums and information sites. I find it a tad difficult being new to this jargon when people use TLAs and don't explain them. Especially if the same TLA is used to mean two totally different things. Not usually in the same post but sometimes in the same forum.

I'm still working on my definitions for PDD and PDD-NOS - they're definitely vague, frequently used but not explained. And they're often connected with ADHD but I don't know if you look at the DSM (damn silly manual) whether ADHD would be officially included with the PDD or the subset PDD-NOS. The glossary is more about giving people like me something they could google for.

Everyone

I think my current special interest is Aspergers, I know people often confuse Autism and Aspergers but they're different. Being aspie - I can feel the difference, there are so many things Autistics describe that I can't begin to understand but it is hard to explain. I find the difference fascinating. I also find the intensities vary. I don't mind social situations, sometimes I'm very good at social chit chat. I can tolerate a high degree of social discomfort and my own reaction in these situations fascinates me also.

I've had a series of special interests over my life time. I would generally know more than the average person on any given topic but never more than the subject experts. Well not usually. I did know more about painting, colours and abstract art than a guy teaching us one time. I can go into an art gallery and sound like a staff member or gallery guide for certain paintings - I'll know nothing about others. My pattern matching skill can be handy. I can pick out my favourite Aboriginal artists quite easily. I couldn't tell you all the artist's names.

I still have to resist buying marbles when I see them in the toy sections. And it is especially difficult to resist when I see them in junk shops - because there could be really old, special and interesting marbles in those collections. I plan making sculptural displays of them in my head but I haven't done it yet. I think I could make good use of silicone rubber. If I could be sure it wouldn't drop the marbles at some time in the future.

My house has the remnants of over 15 different special interests, maybe more, and of course I cannot throw any of it out. And I do cycle back through some of them and pick up some hobbies again. Sometimes I can give bits away to someone as interested as I am or was. Strangely enough I am not a major asset in a trivia contest. Though I will occasionally be very definite and correct about something nobody else in the entire room will know about.

The hardest things about my interests is choosing. I cannot do them all at once. I'd be happy to live healthy for 500 years so I could try to do them all.

Oh and I get stuck on things too. I have a problem solving chart for getting un-stuck - but I have to realise I'm stuck first.



walk-in-the-rain
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02 May 2006, 12:33 pm

wobbegong wrote:
I think my current special interest is Aspergers, I know people often confuse Autism and Aspergers but they're different. Being aspie - I can feel the difference, there are so many things Autistics describe that I can't begin to understand but it is hard to explain. I find the difference fascinating. I also find the intensities vary. I don't mind social situations, sometimes I'm very good at social chit chat. I can tolerate a high degree of social discomfort and my own reaction in these situations fascinates me also.


Autism and Aspergers may have some different aspects, but they are both considered on the ASD spectrum so they share some similarities. Also, as seen by many on this list - there is a great deal of difference between how some people are effected. Like I may have sensory issues to deal with but not everyone with AS or HFA has that or if they do it is minor. I think the main clinical difference is language development. We took my son to several specialists because I did not just say OK when the first one said PDD (which is just the umbrella name for all ASDs). PDD-NOS is one of the subtypes along with Aspergers, Autism, Childhood Disintegrative Disorder and Rhett's. My son mostly was considered HFA because of his significant expressive/receptive language delays. Also, autism tends to be diagnosed by age 3 where AS can be diagnosed later on when the child is having difficulties in the school environment. As one therapist was discussing on a parent list - a child with a diagnosis of AS can be at a disadvantage because parents and teachers may disregard some of their ASD issues as simply misbehavior because there issues tend to be less obvious, but none-the-less still very prevelant. Same with PDD-NOS - that label has a spectrum to it also, not that people with autism are the most serious and those with AS are at the higher end of the spectrum and those with PDD-NOS are in the middle. PDD-NOS can be referred to as atypical autism because the person doesn't fit neatly into any of the other catagories. So, I can see alot of similarities between my son and myself and my son is very smart (one of his interests right now is the periodic table of elements) and he does give little lectures, however, he does have trouble trying to get the words out sometimes and can be dysfluent which is very frustrating for him. So - there are differences, but I don't see AS as something seperate from autism. There are also some who feel that a person may have a label of HFA like my son but change to a label of AS as their language skills improve.



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03 May 2006, 6:12 am

walk in the rain

I agree with you there are a lot of overlaps in the way Autisic people are and the way Aspie people are.

I wish I could draw a picture of what is forming up in my head at the moment - it's a computer metaphor.

I feel like aspies and autistics have simlar processors - and within that there are some processors that are more powerful/can think more than others.

The difference is I think aspies have more I/O (input output) circuits than Autistics. But neither have exactly the same I/O circuits as NTs. There's a bit of overlap but frequently the communication protocols are incompatible and information gets lost or misunderstood.

I have a feeling - to continue the metaphor thought... that some autistics have a bunch of I/O ports that we don't have plugs/cables for. So they can be "listening" or "broadcasting" like mad and we can't get the information at all.

And for all of us (NTs as well I think) our I/O can get over stressed and shuts down and then no information gets in or out either.

I haven't read enough information to know if that's a good way to think about it. There's probably some flaws, I hope in some ways it is a good model of some of what goes on. Human brains are a lot more flexible than computers, and a lot better at self modifying both the hardware (neurons) and software - (thinking and chemistry?)



emc
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03 May 2006, 7:09 am

I'm NVLD or Asperger Verbaliser (I'm all excited because people were talking about it on page 1).

I had IQ tests in 1993 that showed I have a 26 point difference between my Performance and my Verbal scores. However back then it was not recognised as a learning difficulty.

There's an NVLD site www.nldline.com

I was diagnosed by Michelle Garnett who works with Tony Attwood.

I asked her if NVLD would be a secondary diagnosis to AS.

Her email says:

"From my reading and talking to experts my understanding is that NVLD, Semantic Pragmatic Language Disorder and Asperger's Syndrome are more similar than they are different and are most likely the same disorder described by three different groups of specialists, Occupational Therapists, Speech Pathologists and Psychologists respectively."

The definition of whether you are a "visualiser" or "verbaliser" is which IQ score is the higher one. If your Performance one is higher you're a visualiser, if your Verbal score is higher you're a verbaliser.

Also an article I wanted to mention that includes a paragraph "is the label useful?"
http://apt.rcpsych.org/cgi/content/full/10/5/341



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03 May 2006, 12:59 pm

Quote:
Amy

Are you female? I'm always reading that females learn to cope and adapt (i.e. hide the fact they have AS) better than boys, so that by the time they reach overload or just general exhaustion point no-one will believe they really have a problem. If the clinicians have seen 20 people with AS in a time period, maybe 2 of them were female* (and very apparent cases). They aren't used to the lesser outward symptoms in some girls.

*These are made-up numbers.



Saraswathi
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03 May 2006, 11:44 pm

Quote:
Are you female? I'm always reading that females learn to cope and adapt (i.e. hide the fact they have AS) better than boys, so that by the time they reach overload or just general exhaustion point no-one will believe they really have a problem. If the clinicians have seen 20 people with AS in a time period, maybe 2 of them were female* (and very apparent cases). They aren't used to the lesser outward symptoms in some girls.


Yes, I am, and that sounds very believeable to me. It isn't that I'm not capable of coping, but doing it for long periods of time is incredibly exhausting. I saw a clinical psychologist yesterday and it really was a waste of time. She got frustrated with me when I pointed out that the questions in her quiz on depression made no sense, and as such I wasn't sure how to answer them - there were questions like "are you more irritable than usual?" at the low end of the scale, jumping to "are you irritable a lot of the time?", and you could only answer one. An ambiguous test like that seems irrelevant if you've suffered depression since childhood.
She then said we'd talk about changing thinking patterns next time, as that was my problem. I'm not even aware of thinking patterns, let alone able to change them based on her cookie-cutter psychology. *sigh*

Quote:
*These are made-up numbers


lol!



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04 May 2006, 12:28 am

Saraswathi

I think you need a new clinical psychologist. I saw a psychiatrist for a while who liked me to talk about my childhood and how I related to my parents. It was nice to have someone to listen to me in a time of stress, but he'd keep answering the phone for patients on Lithium, and he also offered me anti-depressants which I refused (so glad I had this instinct). He didn't help me much.

My current psychologist - I told her I didn't want to talk about childhood relationships - I wanted specific strategies on how to deal with my day to day problems like debilitating procrastination and conflicting expectations of the people around me. We focus on a technique known as "cognitive behaviour therapy", with strategies like how to get from angry to ok, and how to get unstuck on a problem etc. We're using the way I think to help me not trying to stop it or change it. For instance - I am very good at thinking up plausible reasons for explaining why things are the way they are. So one strategy is to think up plausible explanations that would lead to feeling ok instead of angry.

This is working much better than telling stories about how my parents didn't always meet my needs. As best I can tell, my parents did the best they could and it was pretty good.

Emc

I think I need a translation to plain English for most of that article with the bit about labels. How is this for a bit of obfuscation (hiding the meaning by using obscure and/or big words).

Quote:
"Diagnostic instruments help clinicians in the systematic collection of the right information, which they might match against criteria that, although evolving, hold them to a consistent threshold and a broad conceptual construct. Matching may be refined by an algorithm, but in practice, such mechanical simplicity can be misleading, particularly when there is a comorbid overlay."


I think it means
"Standard lists of aspie criteria help make diagnosis more consistent, but are not enough if the patient also has other conditions."

And that's a bit with very few jargon words (eg "Chronic dysphoria") in it. I think I might write them and ask them to write a plain english translation, they can keep the psych jargon but I could do without stuff like "broad conceptual construct".



magic
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05 May 2006, 4:36 am

Jetson wrote:
The threads about AQ scores and "I just got my DX!", etc. are practical to a point, as a lot of docs don't know enough about AS and comparing your score/problems/DX with other people is one way of figuring out the truth of your situation. The problem with those threads is that they become strangely competetive, as though being less functional/capable than someone else is something to be proud of.[...]

I guess people want to be good in something. The less successful one is in personal or professional life, the better one fares in the "I'm more autistic than you" competition. ;)