Second Opinion
sorrowfairiewhisper
Veteran
Joined: 17 Feb 2015
Gender: Female
Posts: 837
Location: United Kingdom Dorset
sorrowfairiewhisper
Veteran
Joined: 17 Feb 2015
Gender: Female
Posts: 837
Location: United Kingdom Dorset
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
Veteran
Joined: 17 Feb 2015
Gender: Female
Posts: 837
Location: United Kingdom Dorset
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"
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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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.
They probably wanted to rule out other conditions. Hurting non-human animals, for example, is a trait of people with Antisocial PD.
^
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.
sorrowfairiewhisper
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Joined: 17 Feb 2015
Gender: Female
Posts: 837
Location: United Kingdom Dorset
I understand they want to rule out mental illnesses and sometimes theirs, a correlation between mental illnesses and autism. It just seems abnormal to me the types of questions. It would never occur to me, not even as a kid, to slice up a worm, harm an animal or do anything like that, or even damage property. Then theirs the whole, on the scale of one to ten, how happy are you, happy, ok, sad the majority of time ect. They have questions and answers all laid out, in like a pyramid chart. I don't know if it's the same in other countries but they do this in the uk, plus theirs a LONG... waiting list
If you don't mind answering what kind of things did you do that were Aspie related but got accused of being 'Lazy and Stupid'
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sorrowfairiewhisper
Veteran
Joined: 17 Feb 2015
Gender: Female
Posts: 837
Location: United Kingdom Dorset
If you don't mind answering what kind of things did you do that were Aspie related but got accused of being 'Lazy and Stupid'
Taking things literally. I get told that i have, given different answers to questions. Always been a bit clumsy due to dyspraxia. Can't think of anything else tbh but i'm sure, others may say different lol.
May i ask, if you have any kind of specific things that are aspie related? btw the whole lazy and stupid thing, sometimes that's due to lack of interest or depression.
^ I've been accused of deliberately misunderstanding due to literal thinking. I tend to go mute in arguments which is called toxic behaviour. I haven't been called lazy or stupid but have felt it due to limitations.
I'm pretty sure I'm in a toxic relationship but can't work out if I'm the toxic one.
_________________
So unscrew my head
And rinse it out
Polish my thoughts
Turn into doubts
My diagnosis with Level 2 Autism was in 2018. This year I went back to a different Neuropsychiatry clinic, affiliated with the first one but not the same place, for 20 hours of ADHD testing. Some of the tests were exactly the same as the ones for ASD. I also gave them my comprehensive ASD report.
I have to admit, I was a little nervous that the ADHD people would say "Whoops! Your ASD report is wrong! You have ADHD instead!", or "That's odd ... your scores on Test X aren't consistent between the two facilities!"
Nothing of the sort happened. The ADHD people said the ASD report was consistent with theirs, and that each profile only strengthened the other. So my official diagnoses remain ASD L2, C-PTSD, MDD, GAD, Alexithymia, Agoraphobia, and Selective Mutism, but now add ADHD combined type.
I know this doesn't quite count like a "second opinion" of Autism, but in essence it was. They had the authority to remove my Autism diagnosis if they thought ADHD would explain me better, but they didn't.
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