dx- how much did they ACTUALLY know about a.s?

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i am now diagnosed, but was quite shocked by how little the diagnosticians REALLY knew about a.s. they are 'experts', with 5-10 years a.s experiance, but seemed to misunderstand, or be surprised by much of what i said. i just wondered how much other people have experianced this.



eg- i have severe trouble being around others, so its impossible i can really have freinds or marry, or children, which i think bleak and depressing. but they were surprised-b oth said -'you actually WANT to get married'. i KNOW this is not unusual- there was a recent discussion on here about this, its mentioned often. id not said that i hated everyone else, more that i had really severe problems being AROUND others much- getting drained, having shutdowns, muteness etc. i anyway dont see it as being too fantastic to grasp...

also- explaining i find it dificult getting out the house- eg- i said- it takes me an hour to get here, but im always late, as i just focus on the 'hour' part, and forget to get ready BEFORE then- seeing only the entire getting up, getting washed, dressed, ready, travelling thing as an hour ALL TOGETHER, so im always madly scrambelling. he just went- well, sounds like me in the morings, always running for the train. which really missed what i was trying to explain- that i cant 'see' things properly often, and one aspect or section of something becomes overly large- then i cant see the wood for the trees. so tiny, simple actions- are complex, and stressful.

in some ways they were ok- fine with female presentation, and i recognise people are still learning about a.s. etc- but still- i was really thrown by having to explain at length that- people make me ill- but i still want friends, a husband, im painfully lonely... like an allergy.
they were also unable, or unwilling??, to explain WHERE i fell within a.s, beyond sensory issues. tehy didnt get that this was really crucial for me to understand, and i asked repeatedly, but got no answer. weird...

im waiting for a referral to a psychotherapist of some sort, but i have almost zero expectation of any help. in fact i can see myself having a meltdown at their inept lack of knowledge and insight. (the reason im waiting is there are none, or very few, with any a.s experiance- obv i dont want to see someone who just adjures me to be 'more positive' etc- as ive had previously ad nauseum).

anyone else?

I think part of it is that there's so much variation on the spectrum that it's hard to grasp it as a whole. Takes a lot of experience. It's different as a person on the spectrum just grasping your own version of austism. That's complex enough.

I don't get your comment about not telling you where you fall within AS. I don't get what you are wanting? There is no map. There's no way to describe someone's place within the spectrum. Oh, there's the "high functioning" and "low functioning" labels, as well as the "Asperger's", "autistic disorder", and "PDD-NOS" labels, but that's all pretty vague. The differences that exist on the spectrum aren't really mapped out, and so there's no good way to say "you're this kind of autistic person".

I'm a firm believer in self-diagnosis-for everything, not just AS. I saw a psychiatrist who said I had major depressive disorder and anxiety issues....and I do have problems with anxiety & depression. I couldn't afford to continue to see her so I turned to the county mental health department and was in therapy for 2 yrs. The therapist said in his estimation I didn't suffer from anxiety or depression (he was wrong), but I was "intense". I "googled" that to understand what he meant, and I agree. I am an "intense" individual. It was merely by a twist of fate that I began to look at Asperger's as a potential explanation. I ordered 3 books after researching autism spectrum disorders on the web. Aspergirls by Rudy Simone could have been written by me. ( I highly recommend it.) Just about EVERYTHING fell into place for me. My self diagnosis has not been confirmed and I don't need it to be to feel comfortable. I discontinued therapy before I figured it out. I now know what I'm dealing with. I can move forward.

bettybarton, You stated the case precisely. The lack of knowledge can be appalling, especially by "the (un)professionals." Caveat: I am not trying to discredit those neuro/psych professionals who truly are knowledgeable and with positive intent (but there are few, from my experience).

I think their lacking can be worse than any Dx, where problems that do not exist are "invented" by certain "professionals." Granted, some of their mistakes are unintentional &/or minor. But I've witnessed some atrocious gaffes. You are right to be concerned. If I may advise, without pretention? Ignore them. They likely now far less than you do already.

I know one neuro/psych professional who I very much admire (there's more than one, but anyway) - He confided than when he was schooled as to ASD, there was practically no mention, at all, of even the definition. He honestly did not know. If any given professional is asked to name, say, 3 attributes of ASD, they cannot. When asked about ToM, they are lost. Unacceptable. Unfortunately, many take an insulting attitude - and that's just wrong, even potentially hurtful.

IMO, it's quite like if one were to go to an emergency room, screaming in pain with a bone protruding from a bloody leg (i.e., a compound fracture)! Obviously, that needs to be treated asap. Instead, it's as if that 'wound' is invisible. (I am referring to any given Aspie who is in distress here). So, instead, the "professional," who just does not get it, sees someone who presents differently (i.e., Aspie demeanor, aloofness, etc.) and decides to treat us for pneumonia - wrong! Quite like a hit-or-miss treatment for an imaginery condition. And that's dangerous.

I now almost think it's best for any given Aspie to forego treatment. We don't need fixed!! ! Leave us alone, psychs. We know better.

hi mysty- thanks, but no, i disagree...what i wanted to know was their opnion on which *aspects* of AS i do, and dont, have.

eg- i have really severe sensory problems, auditory processing problems. also sometimes poor cognative processing problems, but im still really bright- which seems contradictory.
im fairly good at 'seeming normal'- i can make small talk sometimes, im pretty empathic, but often miss things too. im closed off, nearly 'shutdown' a large proportion of my life.

so i dont see why they cant go-
ok- so sensory- baaad, cognative processing- baaaad, empathy- ok, fitting in, very good, needing to be alone- extreme.however they choose to catagorise it.. those aspects of AS are important- id already worked out i have a freakishly large vocabulary, and really poor working memory.

telling me -poor working memory- yes, i KNOW. but importantly, that's NOT what makes my life dificult. cognative processing is a real issue, and part of the reason i cant work. recognising that would've been useful, as it made me feel really feeble and stupid- it came across as being -'ahh- you're not trying, everyone is like this, you're making a big deal about nothing'. by failing to get what i was aiming at, i wasnt sure whether tehy wernt listening, or i hadnt explained it adequatly, or didnt believe me. i got the impression i was being classed as 'bit hysterical- makes a fuss' but i find life intolerable. saying 'oh everyone is like that MISSES IT. f**k, i CANT WEAR SPECS- because the visual overload is too severe. that's pretty hard- i cant see properly- thats what my life is like. this is what autism does to me.
OTHER PEOPLE WITH AS HAVE JOBS, GET MARRIED- i CANT DO THAT!! ! ! !! !! !! !!
i can barely care for myself. im obviosly having a really different experiance of it to otehres- and i want to know HOW.

i KNOW there is variation within AS- but i felt like i knew more about it from reading Wp for a couple of years than they do from working with AS people everyday for ten years. seiously- being SURPRISED at AS people wanting friends and relationships, but being unable because they one has to be alone- what hadnt they read of it, even if tehy havent heard it in person?? its common.

you said- a person with AS finds it dificult enough to grapple with AS- and that's precisely WHY i wanted to knoew their OPINIONS on what i have, and dont.

gosh, rant...

Welcome to the club

I don't have much confidence in what the so-called experts say about AS, unless they're an Aspie themselves. AS is part of the fabric of our being. It's not something we have, it's something we are. I think it's very difficult for anyone to understand that without being an Aspie.

i can- i did.

No, you can't disagree with a request to explain what you were asking. That's not possible.

If you disagree with something else I said, do explain what. But you didn't even make reference to what I said other than answering the question, which, as it wasn't a question that made any assumptions in the asking, can't be disagreed with.

hi- thanks carole and lab pet.
lab pet- that's EXACTLY what i mean.
ironically, its similar to my cognative and auditory processing problems- you know, like hearing a language you *half *know, but missing the point of the conversation, or talking to a foreigner, who is saying 'yes,' but obviosuly doesnt fully know what you're saying. hearing it, but not comprehending...

i cant work. i cant be around people. i find going out enormously dificult (unelss in the countryside w noone about).
telling me i have a poor working memory, but not saying anything else is POINTLESS. there is no recognition AT ALL of how IMPOSSIBLE i find pretty much everything- washing, cooking- too much to handle. being around people- makes me ill. often im mute.. half the time my brain is switched off.... all rather severe, but noone reading a dx would be given any sense of that kind of thing.(ive read my report,a nd sent them reams of notes asking for amendments- to no avail).

WHY ISNT THAT RECORDED??? that's the kind of stuff i wanted to be told- you have a.s, but you have a REALLY crap variety- other people (my dad, my mum's brother, my grandmother, my cousin)- married, happy, in work.

NOWHERE on their dx is there any appreciation of this. i know that's how the dx works. but there was nothing stopping them verbally telling me- youve got it bad, you cant work, have friends- that must be awful. WTF does working memory count???.. sorry, im ranting.. but it seems so-- innane.

more generally, i still think they dont really get it- like someone from abroad telling you about your country. which is yes- really worrying...

i want to speak to a counsellor as i find everything so hard i spend most of my life lying down.. and i want to know what im supposed ot be doing? what - im supposed to spend the next 70 years like this? its miserable. i have nothing...

mysty- ok- you said:
'There is no map. There's no way to describe someone's place within the spectrum. Oh, there's the "high functioning" and "low functioning" labels, as well as the "Asperger's", "autistic disorder", and "PDD-NOS" labels, but that's all pretty vague.
The differences that exist on the spectrum aren't really mapped out, and so there's no good way to say "you're this kind of autistic person".

what i mean is that there is an easy to write list of common facets of AS; sognition, social interation, life skills etc.

i live as a shut in, i have no friends, no job, speak to noone. other people with AS have jobs, marry, have friends, can drive, go out.

as a basic life experiance, my kind of AS seems quite problematic. but this was not noted in any way in their report (ive read it). i cant speak a lot of the time- i am mute.i dont mean- i dont feel like a chat, whcih is often true as well, but im also additionally often mute.
quite scarey; a serious handicap.
i find it odd that its not recordered, and that they cant tell one- oh- you have some kind of verbal skills, whereas other people with AS have this less, or not at all.


THATS what im disagreeing with you abou i think there ARE specific areas within the AS dx they CAN demarkate. in fact, the aspie quiz does this to some extent.

you must surely have read discussions here about sub catagorising AS-
this is waht i was gettnig at.

>Has anyone attempted to divide Aspergers into subtypes? http://www.wrongplanet.net/postxf89774-0-30.html

thanks Jediscraps- yep- that's what ive asked for-hence the wait. i dont even know if there are any where i live- which seems staggering, given the number of sex therapists etc (yes, i know, its really sad if your sex life goes a bit pete tong- but compare it to a disability which means one has no conversations, let alone sex- humpf... abit of 'how's you father' seems a trifle less...urgent)...

wow, im having SUCH a rant... apols.

but anyway.. i did REALLY want to ask- how clued up were the experts youve come across have been?
i thought the people i saw were about 50% ok- they were nice, and knew a lot, but seemed to miss so much.

My psychologist seemed to be fairly well-informed about Asperger's, but it's probably because her grandson has it. She also seemed to know more about the male symptoms than the female symptoms. Using common male symptoms to support her reasoning, she said that I only have a touch of Asperger's. Upon later discovering how Asperger's is different for females, I found that I'm probably actually typical for an aspie female.

Squirrelrat- ha yes! i had EXACTLY the same thing - from being told to 'well, you cant have it very much' to 'you just think you do' by 'experts'. i was really lucky that i found some female presentation stuff on here a couple of months after i heard about AS. when were you dx'd?

most of AS is invisiable, so i dont get why their assumptions seem so rooted in what they can SEE- without digging any deeper.
i still think the people ive just been dx'd by did this to some extent- without the blank stare and monotone voice 'characteristc' of AS, i was seen as being 'less AS.'
but being a girl, i just learnt to hide it. it wouldnt even occur to me to assume that the way a late dx adult presents themself would be their ACTUAL AS manifestation. id expect much of it to be hidden, and formed by being 20, 30, 40s years old and trying to fit in.
still baffled by how much they jst take us at face value- isnt that supposed to be more AS than Nt behaviour?! just because im smiling, looking someone in the eye and making a weird kind of small talk- doesnt mean i can read clocks, drive, tolerate noise etc, or that i wont go home and collapse afterwards. its an effort, a facade..

id...slightly... like AS dx to involve someone with AS- i just think they (nt psychs) miss TOO MUCH. i saw at least 20 different 'experts'- some for a coulpe of years each, then the ones who tested me- still didnt understand what i said.
i dont know why they find it so hard to grasp..

weird.

It just shows how much the "official" diagnostic process is a lottery and that you have to have done the research YOURSELF to know if you have AS before you look for a diagnosis. Then you keep going until you get someone with enough experience and insight to see the truth, even if that takes seeing several 'experts'. To think that you can just go and see a Psych and imagine they will be able to to tell for certain, and tell you something which actually YOU know best, would be naive IMO. It would be nice if things worked that way, but the reality is that it just doesn't.

I don't think in cases of things like AS that people should imagine that they will be going to a psych to "find out" if they have AS, but simply to get someone "official" to validate what they already know.