post diagnosis, have 'professionals' refuted your diagnosis?

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Butterfly
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18 Feb 2014, 1:57 pm

i wonder how widespread this is? and whats the legality of this?? i live in the uk, btw.

while i realise that one shrink may disagree with another over a *psych* diagnosis, i thought an AS diagnosis was pretty bomb proof.

seems not.

an AS shrink queeried it when i saw him, and has now referred me to a personality disorder unit.

how can one person, after 40 mins and no records, ignore a proper diagnosis??

i was diagnosed w AS several years ago, at an AS diagnostic unit~ for the record, the most comprehensive dx ive ever heard of~ ADOS, 3d modelling tests, working memory tests, a ton of other stuff i forget, and full medical history. it lasted several 2 - 3.5 hour sessions. i also have some of the physical traits of AS~ look much younger, AS forehead, long arms etc, as well as loose joints, ibs, hyperesthesia, synesthesia etc.

finally, i participate in AS research, so ive had to be re diagnosed to be eligable for each of those, and my test results have put me well within, even at the more severe end, of AS. its really not something you could fake when youre doing tests you dont understand til afterwards. AS is also very evident in my family, on both sides; grandparents, parents, cousins, aunts, uncles etc. yes, i have it.

i was recently referred to an AS unit; i asked to be seen by a woman, whos english, as i cant follow foreign accents, and see one person, not the two they require. this was agreeded.
i went there~ to be met by man and foregin woman.

had a huuuuuuggggeeeee meltdown. in AS terms, this is pretty bad- the polar opposite of what i was told would happen, happend, so im predictably going to be annoyed, esp as foreign accents and speakng to 2 or more people cause me comprehension issues. the man queeried my AS, said i had an attitude problem w other people, anger issues, and said i needed psychotherapy. FFS.

ive been having possibly the worst period of my life, including the recent suicide of a close friend/ex boyfriend with AS, ill health, operations, a severe sleep problem ( this contributed to my friend's death, so it has an extra, unwelcome element right now) and some more harrowing stuff. i feel incredibly stressed, and suicidal. i need to see someone who understands As, so i dont have to continually explain stuff, cos theyre all so locked into the outmoded "AS people are all science geeks who cant empathise" BS.

anyway, now referred to PD unit. im quite cross. i wont go, but...

any advice?? surely its not legal to turn down a diagnosis like this? how common is this?

im begging for help, and just being ignored. im really at the end of my teather, and need someone who fully understands AS, not someone who wants to go through my childhood etc again.

/rant/ sorry. but any advice welcomed. ill see my dr soon, who is excellent.



Waterfalls
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18 Feb 2014, 2:39 pm

The only thing I can think of is if you can find someone who is knowledgeable, it might help. Professionals tend to refer to what they know, people not knowledgeable about AS may unfortunately lack knowledge about appropriate treatment and where to get it.

I hope your doctor can suggest somewhere that will help.



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18 Feb 2014, 3:26 pm

Can you phone up or get in touch with somebody that screened you in the past and explain them what just happened?



Aspendos
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18 Feb 2014, 3:41 pm

Why were you referred to that new AS unit?

Can you go back to whoever diagnosed you originally, or to someone involved in the research you participated in?



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18 Feb 2014, 4:23 pm

I'm with the previous two replies. You need to contact the group that originally diagnosed you.

To deliberately create a situation that'd be difficult for someone diagnosed with Asperger's, trigger a meltdown, and then claim it's the patient who has a bad attitude and "anger issues" is just plain stupid.

These people you've ended up with are not looking out for what's best for you.

They went out of their way to mislead or ignore you, and they caused the problem.

Contact the people who originally diagnosed you and do it immediately. Tell them what these new guys did to you. Also, you might want to consider contacting a lawyer.

Oh...

As for "turning down" a diagnosis, YOU are in charge. This is YOUR body, and YOUR health. You have every right to question a diagnosis and look for a second opinion.


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18 Feb 2014, 5:03 pm

ok. thanks : )

sorry, this was really just a rant~ but the woman on the phone at the PD unit refused to read out the referral letter to me, even though its ABOUT me, then got all chippy with me ;/
it bought back the nightmare i had with the guy.
i, and everyone else i know w As, has battled to be diagnosed, having a ton of people tell us 'theres nothing wrong'- its astonishing to get this again AFTER dx.

yeah, ill see my dr, and maybe speak to the place which diagnosed me.

i just wondered whether this happens a lot, and what the legality of it is?? he's basically overruling a legal diagnosis, on the flimsiest evidence.

the unit i just visited is within a large psych clinic~ but the letter head is 'child and adolescent aspergers service' which rather suggests any further help in the unit is unlikely, given im an adult. i dont think being seen there was ever on the cards, given this~ i was so furious at the creepy, patronising way the guy behaved toward me.
saying i have problems with people- well, duh, thats part of AS, anyway~ but its not that. i just need to be alone, which is quite a different thing. my brain just needs rest.

im waiting a bit before i see my dr, as im going to do an fMRI study, which might provide visible, and incontrovertable evidence of AS :D

another reason he may not have taken kindly to me is cos i criticised that centre~ id seen 2 women there years ago, both of whom told me i was 'just depressed', same thing happened to 4 other people i know with AS, who were seen there. i have trouble keeping my mouth shut about injustice, which is part of AS, i know.. but man, it keeps landing me in trouble :/



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18 Feb 2014, 8:56 pm

Paper-

I don't know where you are (what country), but I'd say no matter where it is, one doctor can easily say he or she disagrees with another.

That's how they can do what they did, but it also means you can find someone to disagree with those quacks.

I had a licensed doctor tell me I can't be on the autism spectrum because I couldn't arrange some plastic blocks to match a printed pattern in a matter of seconds. Also, since I could interact and had a sense of humor, I couldn't be autistic, since autistics regard other people as inanimate objects that have no feelings.

He also said some other things I won't bore you with, but the local Asperger's association said no responsible doctor would have talked like that, and if he was in their data base they were flagging or deleting him. My own doctor said the man was unprofessional, and my therapist said the guy was just plain nuts.

Just because someone's a doctor, that doesn't mean they can't be wrong. VERY wrong.

Don't let this shake you. They've upset your settled world view, your routine, and I don't think we have to tell you how important things staying the same, stable and on schedule, is for Autistics. Those poeple got you frazzled, and it's time to calm down and remember they're not the last word on any of this.

Go back to your original source of diagnosis, and have a LONG talk with them, including giving them the names of the people involved in messing with you, if you can.

In some places, it's illegal to do harmful things to the disabled.


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Your Aspie score: 100 of 200 / Your neurotypical (non-autistic) score: 101 of 200
You seem to have both Aspie and neurotypical traits

What would these results mean? Been told here I must be a "half pint".


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18 Feb 2014, 9:28 pm

@sethno.

Thanks so much for taking the tine to write that.

I dont know to what extent he has actually disregarded the AS dx, but he really stuck to his guns over me seeing a shrink, not an AS therapist, citing the 'issues w other people' thing, so he either thinks i have a pd as well, or instead of AS.

Its shocking, as while im fairly ballsey, a lot of people would submit and get their heads filled w psychobabble, which is pretty poisonous~ as it means youre constantly being told all your problems are due to attitude, not neurology, and that you just need to try harder.

And oh yes. I had all the same rubbish you did, when i was trying to get diagnosed~ "theres no such thing as female aspergers" "you cant have it as youre too verbose/ humorous/ empathic" or "you cant have it cos youre not goid at maths/ it/ science".
Its all wank.

These people are locked into an outdated and disproved mode of 'AS is only stony faced science geeks, who look like me spock'. Its a spectrum disorder, ffs, anyway, but its like they read about AS 20 years ago, and have never read any new research on it since.

Thankfully, i know i have it, as all the research studies i do put me firmly in the AS group.

And my anger to this guy wasn't just triggered by that moment, it was years of shrinks telling me i was 'just depressed', and knowing this is what a ton of other people with AS face too.

Its awful they continue to ruin peoples' lives by ignoring their AS.

Thanks for the wise words, and support : )

Thanks for writing : )

Oh~ and i got the 'ooh' (sounds a bit racist) thing on the phone, when i requested an english person as i cant follow foreign accents, too. Its like they have no idea of how AS works. Shockers!!



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18 Feb 2014, 11:05 pm

One told me you don't have Asperger's syndrome...you could read most of my facial expressions. Note they were exaggerated and static.


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19 Feb 2014, 1:33 pm

paper wrote:
Oh~ and i got the 'ooh' (sounds a bit racist) thing on the phone, when i requested an english person as i cant follow foreign accents, too. Its like they have no idea of how AS works. Shockers!!


There are non-English people who have native English accents. If you need a native accent, just ask for someone (anyone) with a native English accent.


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19 Feb 2014, 11:58 pm

Unless somebody is an expert on how autism presents in Adults an especially how it presents females stay away. A lot of generalists and experts in childhood autism are very hostile to the idea that adults can be on the spectrum or that "high functioning" autism is "real autism". This is not true for everybody, there are great psychs that listen but look what has apparently happened to the advocate blogger "A Girl Outside The Box" .

Trigger warning: if you are in a fragile state it is probably best you do not read the rest of this post
After three misdiagnosis she got her diagnosis and was starting to get services. Somehow she was talked into seeing a generalist and was diagnosed with physical and psychological fictitious disorder. Eye contact, known co morbids, her blog, sexual assault during a relationship her late teens were used as proof. According to her That diagnosis is on her medical record so medical personal will not believe what she says about herself or her children. This links to quotes from her fictitious disorder diagnostic report as well as her rebuttals. http://itisnotokaywithus.blogspot.ca/20 ... ng-my.html.

Obviously I am in no postilion and do not have the filters to know is she has fictitious disorder and is fooling me. But based on the attitudes towered aspergers reported by female posters here this is a realistic


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Last edited by ASPartOfMe on 21 Feb 2014, 2:50 am, edited 2 times in total.

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20 Feb 2014, 12:04 am

No


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20 Feb 2014, 12:28 am

From your report of what happened, they probably labelled you as having one or more of the "Cluster B" personality disorders: Antisocial personality disorder, borderline personality disorder, histrionic personality disorder, or narcissistic personality disorder. In so doing, they put you in a very bad, tough spot that is difficult to get out of. Basically, the attitude of most mental health professionals towards those with "Cluster B" personality disorders is that such patients are liars, manipulators, and self-serving. Any attempt by your own words to dispute the diagnosis would only be expected by them and interpreted as a lack of insight into your condition, and they would work from there.

You must find some way to contact your old doctors, send for old records, etc. Do not fall into the trap of trying to convince them by your own words that you have ASD and not a "Cluster B" personality disorder, because they would see each and every such word as a lie, an attempt at manipulation, and self-serving.

You probably want to either go back to your GP, who might have your records, and ask for a second opinion or, again, go back to the old doctors and send for records.


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beneficii
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20 Feb 2014, 7:14 am

I must also add that diagnosing a personality disorder based on the behavior of a patient during a single 40-minute interview, while ignoring all of that patient's known records, is highly irresponsible, and would seem to me to border on malpractice. Personality disorders are supposed to reflect ingrained patterns of poor coping that are pervasive in the patient's life. You can't get that info from a single 40-minute interview with no further investigation.

Maybe they want the personality disorders unit to do further assessment before reaching a diagnosis?


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20 Feb 2014, 5:24 pm

beneficii wrote:
I must also add that diagnosing a personality disorder based on the behavior of a patient during a single 40-minute interview, while ignoring all of that patient's known records, is highly irresponsible, and would seem to me to border on malpractice. Personality disorders are supposed to reflect ingrained patterns of poor coping that are pervasive in the patient's life. You can't get that info from a single 40-minute interview with no further investigation.

Maybe they want the personality disorders unit to do further assessment before reaching a diagnosis?


They ignored the request "no foreign accents", triggered a meltdown in a diagnosed Aspie, and then, in response to the meltdown, verbally abused her and said she had an attitude problem and anger issues.

In short, the people she saw were inattentive, abusive, ignorant, careless, morons.

NOBODY with knowledge of the needs of someone on the spectrum would have pulled such a stupid stunt.

Do you really want such people having further access to this person?

Doesn't seem the right thing to do.

Going back to the original professionals who did the diagnosing DOES seem the right thing to do.


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AQ 31
Your Aspie score: 100 of 200 / Your neurotypical (non-autistic) score: 101 of 200
You seem to have both Aspie and neurotypical traits

What would these results mean? Been told here I must be a "half pint".