Post if your Dx is "Not sure if I have it or not"

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I didn't really do the "talking to classmates" bit very well.
I talked at them about esoterica I was interested in a lot.
The topic I was interested in was the only thing I could see in my mental field of view.

Everyone else was chatting and "wasting time", but for some reason, I didn't have a clue how to chat. I honestly though that people had to talk about things.

Even a few years ago, on a trip, when everyone was talking about friendships and what they were doing at the weekend, I was talking about how to use a computer package.

When everyone was told to quieten down, it was sort of funny and kind of sad too.
I was jabbering on about sound compression, flangers and phasers, when everyone else was talking about parties and who was going out with whom, exchanging cell phone numbers.

I realise now that no-one actually cared about what I had to say because it was probably utterly meaningless and irrelevant to them.

It's awful: I can't just talk to people casually. It always has to be about something physical, technical or specific. I can't seem to say:
"Oooh that's lovely to hear about your sister. How's your Harvey doing?"

I say something like:
"Oh look at that tree! That's a nice turkey oak. Those tree sparrows are delightful."

Talking about people is something I find incredibly difficult, even though I'm female.
It's bizarre.
Kind of isolating too.




Very interesting.

Sounds like you wanted tutoring or mentorship.

That would have helped me also.
In fact, I've learned the most when I've had one to one tuition and studied on my own.

I can't tell you how many times that's happened to me. Too many times to count, for sure. I was always the last to be picked for teams during PE and they bregrudgingly picked me. Most the time I didn't want to join in after that. I felt like I was being coerced into something by the teacher.
Others found groups to join because they were well liked. I never found any because nobody considered me to be a benefit. Simply a hindrance to their success.
I chose German as my elective language in college and once, we had to break into groups and I automatically went into a sullen mood and wouldn't move my desk because I was dreading every second of it.

i'm thinking at this point, a dx would be a relief. i didn't think it would matter. i keep telling myself that, of course i know. but the fact is, i don't. it feels too much like being in limbo. AS makes sense of oh-so-many-things---even some physical problems and traits sometimes associated with the dx. but i still have this back-and-forth thing going on between, "oh, sure i am," and "oh, maybe i'm not."

on top of that--i truly am obsessive. so i worry this whole notion in my mind so much; often there isn't room for much else.

I'm happy for people who find the dx and assessment "a relief".

However, it was never a relief for me.
I was judged as AS and therefore "defective" in other people's eyes from such a young age.
Any time anyone mentions the words "Aspergers Syndrome" it makes me feel like someone is trying to steal the soul from my body or like I'm being punched in the stomach. Depression doesn't really do justice to it. It's the feeling of being judged as somehow subhuman and people trying to assert their power over me by saying: "You're not like us, you don't deserve to enjoy socialising. You're a label, not a human being."

I secretly wish that I'd never been assessed at all.
It didn't help me even though I was having social difficulties.
It made my family and people who cared about me so confused and angry.
I wish that I'd been taken out of school and been privately schooled in some creative or scientific enterprise or at least been put in an environment that encouraged individuality and wasn't so crowded and overwhelming.

I wish I hadn't been pressured to be so social, be "normal" and fulfill my "developmental stage quota".
I would have been much happier if I'd just been allowed to be myself.




Even after I was assessed I was in limbo.
All the time I was in limbo.
When others suggested I ditch the label, I was in limbo.

The assessment or denial didn't change anything: they didn't help anyone, least of all me.
I'm still in limbo now.
I've been in limbo for twenty years.


I wish to goodness that the negative statements in the criteria AS didn't make sense of me.
These negative criteria have been a curse on my life.
It's like my personality has been twisted into this hideous "anti-social monstrosity" by a few painful words.

The words "deficit", "failure" and "disorder" hurt and demonise the person with a unique personality.

I felt ashamed to do the things I enjoyed: focussing on interesting topics and details of objects.
Looking at detail and basically being myself had been made into a "disease".

I'd like to be able to describe my personality on my own terms without someone trying to define it in a negative way for me.

It doesn't have to be like this.
If people could just be more open to the idea that others have different styles of relating, ways of doing things and mental operating systems: it would be a start.

They don't have to be put on pedestals and called "special", just be accepted for who they are and, given appropriate and non-condescending/patronising help.

I notice that other people are very quick to spot and exploit perceived social weaknesses in others and use these to exclude, label and ostracise the other person.

It's the "perfect crime": make a set of criteria so socially stigmatising that the other person can't talk about their issues with anyone other than "professionals". Make the whole situation so outrageous or exclusively "male" that other people don't believe you. It's so stigmatising and the idea of something being "wrong" so distressing to the family that the person has to keep their issues a secret. Hence dependency on professionals when it should really be the community providing, help, jobs, social support, opportunities, creativity, laughter and love for the individual.

You can't seem to get any Psychological help for stigmatising Psychological criteria and other people's negative judgments/pity/condescension screwing your life up.


How can I be medically assessed and judged for something that affects my whole life by something that doesn't have an objective physical test for something that no-one can define properly?

This question has been whirling round my mind ever since the assessment and is driving me crazy. If I am "mentally ill" at all, this question is what's really fueling my skepticism and depression.

Last edited by AmberEyes on 27 Jul 2009, 3:38 am, edited 2 times in total.

AmberEyes,

You really need to be reassessed now as an adult to see whether you have AS or not (a clinical psychologist will do), just so you can hopefully move on from where you are now.

Big deal about the negative connotations in the DSM-IV-TR; that's the whole point of disorders, diseases and illnesses--they ain't pretty things to have, whether it's AS, MS, MR, CP, {insert acronym here}, and those who suffer from these disorders have the recognition that yes, "we" do have to put up with the negative aspects of these conditions--it's why "we" can't do the things "you" can do.

I honestly don't see how this would help, given the lack of knowledge and appropriate services.

I also doubt that they'd take my concerns seriously given that I'm female.

Especially since I wrote a polite letter saying that my AS assessment had been a mistake and this was accepted.

The last thing I want to do is stigmatise myself and cut myself off from potential employment and opportunities. Friends and family have warned me against doing this. People who love me are trying to protect me from unnecessary discrimination.

I probably know more about myself than any Psychologist ever would.
I am the expert on myself and no set of criteria or professional can ever change this fact.


No.
I do not want to be talked down to in a condescending or patronising way again.
I do not want to be treated as if I'm subhuman.
I don't want to be treated like a label.

Perhaps, if I'd treated with respect in the past and given more sensible/balanced advice in the past I'd be more open to the idea.

Quite frankly, I'm frightened of Psychologists and how they might take the control of my life away from me. I don't trust them any more, I even baulk at the word "help" because of how I was treated in the past.

I'd much rather see a neuro-scientist or at least someone who can physically back up claims with proper tests.



I disagree on some of this because I have been able to do some of the things the so called criteria have said that I supposedly shouldn't be able to do.

I can understand metaphors, idioms and figures of speech if I study them properly.
I also have an active imagination.
I've been told I have a unique sense of humour.
I can also lead an active social life as long as other people approach me first and I'm in the right environment.

Any issues I have are purely social.


If I was in charge, I wouldn't label mental grievances as "disorders".

I'd take a positive, balanced and proactive approach: I wouldn't stigmatise or hurt people even more.

Some differences, I agree are hard to live with.
My life has been hard and distressing socially at times.

But I also think that the surrounding social and cultural environment have roles to play in this.
In the right environment, some people can thrive on these characteristics and they aren't seen as "disorders" at all!

I'm not entirely convinced about some of the evidence backing up these so called "disorders".
Some of the criteria sound like they're trying to interfere with other people's lives and make the "deviants" "normal".

I suffered far more when people claimed that I was "disordered" than I ever did without the label.
Drawing unnecessary attention to the issue can hurt.

Someone I know claims that Psychiatrists invent new disorders (he calls them lies) each year so that they can have job security. I don't think he's entirely correct, but I think he does have a valid point.

I was diagnosed Friday, so it's still a bitt early to tell how I feel about it. In a sense I can agree with AmberEyes, because words are so powerful, and being labeled "disabled" doesn't do wonders for one's selfesteem. Fortunately the psychologist (specialist) focused a lot on my strong sides and how I've already been able to function fairly well because of them.

Sometimes I feel like I've dreamt this whole thing up and somehow managed to say the right things to convince the psychologist. On the other hand the IQ-test showed a typical AS-profile, and I wouldn't know how to fool that.

Basically I think I feel relieved. I've obsessed about this thing for a year now and ever since he said; yes you have these AS-features and you are clinically impaired, I've felt I don't have to think about it as much. So it feels like a new beginning, because I know myself better and now I can move on.

"If I was in charge, I wouldn't label mental grievances as "disorders".

I'd take a positive, balanced and proactive approach: I wouldn't stigmatise or hurt people even more. "

I agree. I also don't believe that "disorder" or even "syndrome" are necessarily the best lables to attach what is essentially a neurological difference. I have found that while there are drawbacks to the way I process information, there are also advantages. I am ADD in addition to the Aspergers, but I work with children a lot and ADD is quite helpful in that instance. Because I think as a whole (somewhat like in pictures, I guess) I am able to take elements from various situations and synthesize them into unique solutions to a current situation. I could go on, but you get the idea. When I worked with children with learning challenges I would tell them the same things. You learn differently. It can make it harder to learn some things but you will find advantages to the way your brain works too. It's as much a fact of life as someone having a missing limb or sense. They aren't "inferior" but they have special challenges and will find advantages if they look for them.

If you are happy with the way things are, then stick with them. That's my "helpful" advice.

Someone help me understand this. If in fact we are talking about a spectrum then it seems logical to me that folks who are aspies would also be ADD by default. I mean it works between ADD and ADHD. ADHD is ADD with hyperactivity thrown in right? So then why wouldn't an Aspie also be ADD plus hyper activity, plus non-verbal issues. But it doesn't work that way evidently. I have attributes of ADHD that many Aspies here do not seem to have, in particular a tendency to multitask, and difficulty completing task A before starting task B, or even occasionally failing to complete task A because I got side tracked and forgot I was working on it. I guess spectrum doesn't mean that exactly.

You have stumbled onto the mess that is neurodiversity.

Here is a quote from Wikipedia that explains ADD vs ADHD:


Basically, there are no clear answers. You are not necessarily ADHD if you have AS, just like you are not necessarily OCD if you have AS. Likewise, you aren't necessarily AS if you have ADHD or OCD. You may have some of the traits of each, one, or neither, to varying degrees. Some degrees may be severe enough to be clinically diagnosable, others may not. Since they all describe symptoms and come from different perspectives, you're going to have a myriad of combinations.

"Someone help me understand this. If in fact we are talking about a spectrum then it seems logical to me that folks who are aspies would also be ADD by default. I mean it works between ADD and ADHD. ADHD is ADD with hyperactivity thrown in right?"

One of the truisms about autism in it's many forms is that if you know one person with autism (or Asperger's) then you know one person with autism. In other words, each individual with autism or Asperger's is very unique in which aspects manifest and bother them and which don't. I have a great imagination and a lot of empathy. I suck at social skills, even after all these years. I have some sensory issues but for the most part my gross and fine motor skills are okay. I am ADD, (distractable, forgetful, etc) but not hyperactive in the slightest. Get the idea?

A spectrum is a wide array of symptoms and generally the person diagnosed as being on the spectrum has a certain number of those symptoms but rarely will anyone have all of them.