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

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It's probably the way I'm feeling at the moment - and I know none of you know me, I'm not big on introductions - but reading some of the posts, I was upset by the threads to do with whether someone had Aspergers or not, or whether a diagnosis would be useful or not. I guess my interpretation of what I read was that if someone wasn't considered by the forums to have AS, but considered themselves an Aspie, they wouldn't be welcome here.
That made me uncomfortable because it reeked of all the NT forums I've visited, and the sports teams I've been left off, and the jobs I've been 'over qualified' for. My whole life I've known there was something different about me, sometimes I've visualised drilling into my head and pulling it out, believing I would then be just like everyone else. It feels like something tangible, sometimes it's brilliant, sometimes it's my demon but it's there. I've been bounced around between psychiatrists and psychologists and counsellors and psychotherapists, and the general approach is to laugh and pat me on the back; "No, you don't have OCD, you're not bipolar...etc...just a bit depressed, get out more often". This is something of a last stop for me in a world that doesn't seem to understand who I am.

As a bit of background, I grew up in a dysfunctional but loving family, with a brother diagnosed with AS and a father we suspect has it as well. My brother had numerous difficulties arising from his AS, he hardly feels pain or hunger at all, had real problems with social integration, has severe phobias to germs and words relating to the body, had speech and learning difficulties and is often in conflict with our father. I didn't begrudge him the help he got; he needed every bit of it. At the same time though, I was labelled 'gifted', considered precocious, and left to live a childhood as a loner. It didn't particularly bother me for the earliest years of my life - before the bullying made me aware I was different - because I could spend hours in my room playing happily by myself, and phonecalls from the couple of friends I did have were an intrusion I avoided. It was never considered that I could have AS - I wasn't like my brother, I loved reading, I loved art, and schoolwork may have bored me to tears but I managed to do well when it suited me. None of the counsellors I have seen ever entertained the possibility of AS either - I was told I was high functioning and no-one would ever have guessed I was depressed. In truth, I've learnt the social behaviour I practice now, and I think I do pretty well most of the time, except when I'm depressed or an unexpected situation crops up that forces me to break the mold of my scripted conversations and standard responses.

I don't think I'll ever get a diagnosis. It would be nice - I don't see it an excuse for my behaviour, but a validation of my experiences; an explanation, but it's not something I hold out hope for anymore. I also don't feel a diagnosis would strip me of my individuality - looking around here, I see a bunch of very individual and unique people, not a 'condition'. At 17 I decided I hated who I was so much that I took a handful of antidepressants and hoped I would die. I didn't, of course. But to be dismissed out of yet another place that I don't fit into...is perhaps more than I can handle. I'm looking for somewhere I can be me without being called names or having my teeth broken. Where is my planet? People used to joke that I was a planet on my own - 'earth to planet Amy' is something I heard a lot. But I don't think I want to be a planet all by myself. Does it matter if someone is dx with AS or not? Or if they think they are and they aren't? I'm not sure if those are rhetorical questions or not, but feel free to answer them.

Saraswathi

I was also afraid that without declaring an official diagnosis from an official AS expert in Adult Diagnosis meant I wouldn't be accepted here, and the playground equivalent of everyone pointing and saying "you don't belong" would happen.

But it hasn't. I've also seen self confessed NTs in here happily contributing too.

I felt like the rug had been pulled out from under me when my therapist stopped arguing with me about being aspie. I thought I was going to have to PROVE it to her and was collecting diagnostic information to back me up. It's also a relief I don't have to do that anymore. I also talked some more about seeing a specialist. But she seems very familiar with the kinds of strategies I need, though I don't think she's treated many Aspie Adults. I had surprised her, even though I'd been seeing her for over a year regularily. She also has explained there is a huge variation in the intensity of aspieness.

I think the main reason now I wanted to see a "real specialist" is I wanted to be welcomed as an exciting research opportunity. Since the treatment I need (learning new social skills and strategies) is already available to me - diagnosis or not, me being the special guinea pig lost its appeal too.

As for being accepted here - it would be nice, but it is only an internet forum. If they don't accept me - they're very easy to avoid.

The other thing I have decided is that aspies tend to be very literal and abrupt, and aspies are very good at rubbing everyone up the wrong way - even other aspies - maybe even more so. So I just figure - most of them mean well, take them literally and respond accordingly.

I mean well, even if I write like a pompous condescending know it all smart arse sometimes.

If AS explains as much of your previous experiences as you say it does, then you shouldn't have to worry about a dx, especially if you can draw behavioral parallels to you brother, who has a formal dx.

I don't have the time or money to get a dx. I've done all of the online tests & read all the books, as many of us have. My GF is a teacher and she brought home a bunch of material and I've gone through that, too. Here is what I've learned about self-diagnosis:

The most difficult issue to address during adult self diagnosis and even during adult professional diagnosis is that the adult subject is automatically biased as soon as he or she has knowledge of AS. i.e. the person answers differently based on hoping he or she has os does not have AS. Try as you might to remove any concious bias, there's always that question of a subconcious bias.

What I recommend is the following: Take every online test twice! The first time answer as conservatively as possible, the second time as liberally as possible. Most AS/Autism tests are based on scales, and taking these tests twice allows you to answer differently to the questions on which you waver (for example: can't decide if you're a 2 or a 3 on a scale of 1-5? go through the test once answering with a 2, then go through again ansering with a 3.).

Then compare both scores. You're probably somewhere in the middle, and you've done your best to eliminate as much bias as you can.

Those are good points you raise.

You don't have to be diagnosed AS to be a part of this site. You are allowed to self-diagnose. It is assumed, even from a professional point of view, that there are a lot of aspies that go undiagnosed. It's just that a professional diagnosis allows benefits from the state and things of that nature, which you may be able to get even if you are diagnosed with something else.

A diagnosis for AS can sometimes be tricky, because I've heard that the therapist will need extensive background history. I've heard they may use the PDD-NOS diagnosis if such background information isn't reached, which can also put you on the autism spectrum. The best method for diagnosis is to utilize a therapist who has knowledge of developmental disorders. If your area has an aspie group, they may point you to a doctor they tend to trust. This will give you a good understanding where you stand, if there is one around your area. Some therapists may just think you have an adjustment disorder, and I imagine some don't even understand AS, for it is really new in terms of the US.

The last diagnosis that I believe I had was schizophrenia, which I know isn't relative to me. It arose because the therapist in question misinterpreted my obsessive interests and odd perceptual altercations as delusional thinking. I am thinking about trying to get a new diagnosis for trying to get into a supported employment program, though schizophrenia would do just well, but I don't want to be seen as somebody I know that I am not. I also attended a private school for gifted children, which may just be enough to get such benefits, though that was like 10 years ago before college.

Stick around. Nobody here is going to condemn you.

- Ray M -

From the Glossary I'm building. I figure TLA (three letter acronyms) are hard to google but the words in full are easier.

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

Also related
SPD : Semantic Pragmatic Disorder - difficulty with spoken language
SPLD : Semantic Pragmatic Language Disorder - difficulty with spoken language aka Asperger Verbaliser (or is that Asperger Visualiser - I always get muddled).
TS : Tourettes Syndrome
and
APD : Antisocial Personality Disorder; sociopath, bullies, abusers
APD : Auditory Processing Disorder (hear but not understand)
AS : Aspergers Syndrome and Autism Spectrum which are not the same so watch out.
ASD : Autism Spectrum Disorder?

You can see from some of those, why I'm not so fond of unexplained TLAs.

I thought it might be good to start a dedicated thread for the glossary.

Your depression/paranioa is probably a good balance to the naivety and literal trusting that can come with aspieness and get us burnt. Blech.

There is another acronym that is related...

NVLD : NonVerbal Learning Disability : right brain different, similar to Auditory Processing Disorder and Asperger Verbaliser

When I look at Asperger Verbaliser - I imagine that this person would be one that likes to talk a lot ie is very verbal. Someone wrote that they were Asperger Verbalizer because they scored higher on a Verbal IQ test or a "Performance" (Visual?) IQ test.

http://www.tonyattwood.com.au/publications.htm

That's interesting, wobbegong. One thing that makes me feel out of place here is that so many people have an extreme interest of capability in complex mathematics. That's not something I identify with; I got pass marks in maths at school until I dropped it as a subject, as it aggravated me.
Now writing is something I can do - better than speaking, though that's exponentially better than it was when I was younger - but I'm still not sure how much I comprehend, and how much is just remembered and parroted from somewhere else. It's not something I do consciously, but it's obviously something I do as I was accused of it on another forum, which was hurtful. I don't always use words appropriately, sometimes they don't mean what I think they mean but I like the way they sound.
I'm not sure where I fit in. NT forums often seem quite inane and repetitive, but some of the threads on here display a capacity to think and reason which is completely out of my league.

Saraswathi

I feel a little out of place here because I don't have a special interest in transport systems.

You got me on the maths thing though - I've got a degree with a major in Pure Maths. Applied maths sucked because it wasn't "elegant" enough. I don't use much of my Pure Maths if any now.

I was crap at English and other arts subjects at school, I thought that this was because I didn't get along with the teachers - plus I used to edit my "train of thought" into oblivion if I "worked" on an essay. The ones I wrote in the five minutes before the teacher showed up to class - got better marks than the ones I spent three weeks "working on". I never could get the English teachers to explain what the difference was between B+ and an A was - or how to get from B+ to A. I know now - I can see when I read the various essays - why one will get a better mark. I could list off some attributes. But they couldn't explain it to me. I was also very offended by one who set us a first assignment for the year "write a poem" and then handed mine back with "this is not a poem" written on it but she couldn't tell me how to write a poem either. I haven't forgiven her yet - can you tell? I quit English after that.

However - since leaving school - I have written for club magazines and stuff on the net (not just the internet) that people have sought out for its entertainment value. So I must be good at written expression after all and those English teachers didn't know what they were doing.

Anyway - I hate when someone says I'm not "good enough" to be your friend - you're too brainy. I know what they mean but I don't think that means we shouldn't be friends.

I think the mimic thing is part of aspergers. Whether you mimic the way people speak and act or the way they write. I'm always a bit worried after reading a sci-fi novel that I will write or speak the way they do in the novel. I definitely think in the language of the novel for quite some time after reading it. And I can always tell when I've been hanging out with people who swear a lot - I make my mum cringe. It's funny how that "cringe at swearing" comes on with age.

And I can personally vouch for the fact that a gift for thinking logically and reasoning - just means we can think up very very plausible reasons why something is the case, and be completely convincing - but completely wrong also. At some point we will say something like B must be or is probably or could be caused by A - and build a whole stack of cards on it, which falls down the minute that flawed connection is exposed.

I don't know where you fit either Saraswathi, but aspie people are all unique as well as having some thinking patterns in common. Don't expect to be the "same", and don't worry if you don't think you fit in. Just thinking you don't fit in probably means you do.