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sorrowfairiewhisper
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22 May 2020, 4:38 pm

Has anyone ever had a second assessment or seeked a second opinion? For when it comes to AS? My first one was inconclusive. As traits? Awaiting second assessment. Anyone in similar situation?



starkid
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22 May 2020, 11:27 pm

I'm waiting for the results of my third, but I feel like it's the first legit evaluation I've had because the first two were such shams.


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sorrowfairiewhisper
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23 May 2020, 5:04 pm

@starkid

I'm sorry to hear of your experience, i hope the third time will be lucky for you. I hope you'll get a more positive result and better evaluation and ongoing support

Thanks for sharing



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24 May 2020, 2:55 am

My partner's daughter was assessed by 2 separate organisations. It was looking to us as if she had ASD quite strongly. The first one, after initially saying she seemed to have ASD, declared her not to have it on the assessment proper, and didn't find much else wrong either. We were more than suspicious because they presented no data for the ASD testing, though there was data for all the other tests, and the total time spent testing was rather less than what they'd written it down as, so it looks as if they never in fact tested her for it at all - certainly their report didn't inspire confidence. The other diagnoses declared fairly mild things that wouldn't have got her any benefits, and it was clear to us that her capacity to hold down a normal job or stay above water on a university course would be very low, and we couldn't see how she'd survive independently.

So my partner found another place to test her again, and that time she was diagnosed as having a severe level of ASD. She's now just about keeping her head above water on stingy benefits after (with a lot of difficulty and anguish) completing a degree with accommodations for her condition.

ASD assessments appear to be rather a subjective lottery and I'm disappointed to find that it's one sector of the service industry that has little or no genuine standardisation, quality control or warranty. Considering the prices and the salaries involved, I'd have hoped for something rather better, if I hadn't already been rather cynical about services in general. How it's possible for two "professional" organisations to deliver such utterly incompatible results from an investigation of the same thing and for both of them to be still licensed to trade, I don't know. I presume there's not enough political will in the system to fix the problem.

I had cause to think something similar might be going on when I had my diagnosis. Although I only got tested once, I had dialogues with 3 different candidates for the job, and each clearly had different ways of doing things. One wanted to test me extensively for every mental ailment known (which would have been very long and costly I expect), another simply wanted an eye-wateringly high fee just for the ASD testing, and the third one wanted to test for ASD with some attention to the possibility of other conditions, and charged a fee that, although not peanuts, was acceptable.



sorrowfairiewhisper
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26 May 2020, 1:26 pm

ToughDiamond wrote:
My partner's daughter was assessed by 2 separate organisations. It was looking to us as if she had ASD quite strongly. The first one, after initially saying she seemed to have ASD, declared her not to have it on the assessment proper, and didn't find much else wrong either. We were more than suspicious because they presented no data for the ASD testing, though there was data for all the other tests, and the total time spent testing was rather less than what they'd written it down as, so it looks as if they never in fact tested her for it at all - certainly their report didn't inspire confidence. The other diagnoses declared fairly mild things that wouldn't have got her any benefits, and it was clear to us that her capacity to hold down a normal job or stay above water on a university course would be very low, and we couldn't see how she'd survive independently.

So my partner found another place to test her again, and that time she was diagnosed as having a severe level of ASD. She's now just about keeping her head above water on stingy benefits after (with a lot of difficulty and anguish) completing a degree with accommodations for her condition.

ASD assessments appear to be rather a subjective lottery and I'm disappointed to find that it's one sector of the service industry that has little or no genuine standardisation, quality control or warranty. Considering the prices and the salaries involved, I'd have hoped for something rather better, if I hadn't already been rather cynical about services in general. How it's possible for two "professional" organisations to deliver such utterly incompatible results from an investigation of the same thing and for both of them to be still licensed to trade, I don't know. I presume there's not enough political will in the system to fix the problem.

I had cause to think something similar might be going on when I had my diagnosis. Although I only got tested once, I had dialogues with 3 different candidates for the job, and each clearly had different ways of doing things. One wanted to test me extensively for every mental ailment known (which would have been very long and costly I expect), another simply wanted an eye-wateringly high fee just for the ASD testing, and the third one wanted to test for ASD with some attention to the possibility of other conditions, and charged a fee that, although not peanuts, was acceptable.



Thank you for sharing what you and your family have been through! they should've presented Data, with these tests. I don't like the tests, well some aspects of it, since they asked questions, such as "have you ever thought or or ever harmed animals"? have you ever cut up an animal? have you ever hurt others or yourself? have you engaged in promiscious behaviour. I love animals, it's not what i would initially expect to be asked and i wouldn't know if people, with suspected autism may have or have been known to hurt animals. I'm so glad that she got a third assessment and have the help she needs. They're quick to assume, that someone is fully capable at times, from like a few quick conversations but no one will know, someone better than her family/carers. I know of someone that was told, as a kid, he'll grow out of it. Never did. Thanks again for sharing. You and your step daughter aren't alone. I've found them unhelpful. To me "AS Traits" isnt enough, i wanted a yes or a no. Not inconclusive. Theirs some things in life i will always need some help with, like you and your step daughter. If the helps there, we'll survive, without it, we'll struggle. All because someone that sees us for like an hour, say theirs nothing "wrong"



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26 May 2020, 1:29 pm

My first one was valid, but when DSM-V came out, I went back. My diagnosis went from "Asperger's/HFA" to "PDD-NOS with elements of PTSD" or something like that. Either way, it's a relief to know that there is some other cause than "Lazy and Stupid".


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shortfatbalduglyman
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26 May 2020, 1:57 pm

Considered it

Too expensive

Besides you don't know which one is wrong



ToughDiamond
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27 May 2020, 12:08 am

sorrowfairiewhisper wrote:
Thank you for sharing what you and your family have been through! they should've presented Data, with these tests. I don't like the tests, well some aspects of it, since they asked questions, such as "have you ever thought or or ever harmed animals"? have you ever cut up an animal? have you ever hurt others or yourself? have you engaged in promiscious behaviour. I love animals, it's not what i would initially expect to be asked and i wouldn't know if people, with suspected autism may have or have been known to hurt animals. I'm so glad that she got a third assessment and have the help she needs. They're quick to assume, that someone is fully capable at times, from like a few quick conversations but no one will know, someone better than her family/carers. I know of someone that was told, as a kid, he'll grow out of it. Never did. Thanks again for sharing. You and your step daughter aren't alone. I've found them unhelpful. To me "AS Traits" isnt enough, i wanted a yes or a no. Not inconclusive. Theirs some things in life i will always need some help with, like you and your step daughter. If the helps there, we'll survive, without it, we'll struggle. All because someone that sees us for like an hour, say theirs nothing "wrong"

I agree those questions don't seem appropriate to an ASD assessment at all. I wonder who dreamed them up and why. I've never seen anything in the diagnostic manuals that mention hurting people or animals, self-harming or promiscuity. It sounds like somebody was for some reason allowed the freedom to frame whatever questions they liked without being required to stick to a respected diagnostic procedure. Funnily enough, my stepdaughter's first assessor remarked that they thought she basically just had a bit of social anxiety that she'd grow out of. One criterion I applied carefully to my selection of a diagnostician was that it had to be clear that they had a history of genuine interest in autism, as evidenced by their CV or references on their web page to having done some research about aspects of the condition. I suspect some of them just tack "qualified to assess ASD" onto their self-descriptions when all they've done is to take a cursory glance at the subject just so they can "tick the box." A lot of service providers are posers who don't really know the job they offer to do, and it seems mental health is rather a haven for them.



starkid
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27 May 2020, 12:24 am

ToughDiamond wrote:
I agree those questions don't seem appropriate to an ASD assessment at all. I wonder who dreamed them up and why. I've never seen anything in the diagnostic manuals that mention hurting people or animals, self-harming or promiscuity.

They probably wanted to rule out other conditions. Hurting non-human animals, for example, is a trait of people with Antisocial PD.


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ToughDiamond
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27 May 2020, 11:29 am

^
That would likely explain it. I remember when my partner got a spider bite that was turning very nasty, after they'd figured out that it was almost certainly an insect bite they said, "try not to laugh, but they make us ask everybody this: was this wound caused by domestic violence?" We tried not to laugh, but the thought of me chasing her around the house with a venomous spider was too much for our self-control.