Adult Asperger diagnosis - use of the word "impairment&

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Glaswrong
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29 Aug 2014, 10:21 am

Hello there

Myself and my girlfriend (PhD, technical lead at a major engineering firm) are on our third NHS consultant psychiatrist. This one keeps asking about if there is an impairment in the home life - I've told them about the strict routines, the meltdowns, the problems in the simplest of conversations but because she can tie her own shoelaces (she is a brilliant cook, could be an interior designer, professional shopper, basically she is brilliant at everything apart from the emotion/communication/spontaneous thing) they think she can't have Asperger's. Any thoughts?

Thanks for your time.



AspieUtah
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29 Aug 2014, 10:42 am

Typical. DSM-5 expects certain "impairments" http://www.cdc.gov/ncbddd/autism/hcp-dsm.html in its new Autism Spectrum Disorders diagnostic criteria. Unfortunately, there is no standard definition of the term and its application appears to ignore the adaptations adults with AS are sometimes able to make to "mask" their impairments. Re-examine yourselves and list as many of them as you can find.


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calstar2
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29 Aug 2014, 10:59 am

I'm assuming since it's through NHS that this person is not a specialist and they aren't going to be familiar enough to look for things out of the DSM. Can I ask why you guys are seeking a diagnosis, because it sounds like from what you've said that she can function well enough besides in interpersonal affairs? All I mean by that is it seems like she won't be needing any disability benefits or accommodations that a diagnosis would help with and afaik, that's really the only benefit from an adult diagnosis.



AspieUtah
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29 Aug 2014, 11:56 am

calstar2 wrote:
I'm assuming since it's through NHS that this person is not a specialist and they aren't going to be familiar enough to look for things out of the DSM. Can I ask why you guys are seeking a diagnosis, because it sounds like from what you've said that she can function well enough besides in interpersonal affairs? All I mean by that is it seems like she won't be needing any disability benefits or accommodations that a diagnosis would help with and afaik, that's really the only benefit from an adult diagnosis.

Yep. Very true.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


indiana
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29 Aug 2014, 2:47 pm

calstar2 wrote:
I'm assuming since it's through NHS that this person is not a specialist and they aren't going to be familiar enough to look for things out of the DSM. Can I ask why you guys are seeking a diagnosis, because it sounds like from what you've said that she can function well enough besides in interpersonal affairs? All I mean by that is it seems like she won't be needing any disability benefits or accommodations that a diagnosis would help with and afaik, that's really the only benefit from an adult diagnosis.


The benefit for me was peace of mind; knowing that there were others out there like me and, more importantly, I wasn't crazy - just different from NTs.



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29 Aug 2014, 5:40 pm

This is what makes me hesitate to pursue a diagnosis on the NHS also; I'm 52 and even though I do feel impaired and have all my life, they're going to take one look at the fact that I manage to work, manage to hang onto a place to live, and manage to shop for my own food, and tell me basically to piss off. Even though what can never be seen from everything that looks good on paper is the pain, struggle and panic attacks I suffer in order to keep this life functioning. Oh I function all right -- just with MASSIVE difficulty. I'm like the swan -- you see something floating along looking okay above the water, but underneath the feet are frantically thrashing. I function to the naked eye, but inside I'm desperately trying to keep my wheels in motion, and mentally and emotionally I'm dying constantly.

The British government have made severe cuts and are doing everything they can NOT to diagnose people with things that may qualify them for public money. Adults with ASD, I suspect, are going to have a tough time.

I want my diagnosis only for peace of mind too. I don't think anything monetary or otherwise helpful will come from outside just because of it. But I'm afraid to even start because i know how bad it is for adults to even get to see someone experienced with adult diagnosis. I was looking on the National Autism Society website's directory and to my dismay found there are NO specialists in my area that are on the NHS, only private. Yet a privately paid for diagnosis may not be accepted if I ever DO have to apply for a benefit because of ASD.

It's a bleak outlook.

I'm sorry your girlfriend has been given the cold shoulder by the NHS. Perhaps seeking a private specialist may be a better option?

.



badwhippet
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29 Aug 2014, 7:46 pm

I've received a UK diagnosis today via the NHS (GP referral). I'm 47, female, successfully employed and probably just one of thousands of invisible candidates like many here. My verbal communication is not monotone, I don't have melt-downs (but do have shut-downs if in a sensory-overload situation - most people don't even notice that). The only visible attributes are difficulty with eye contact - plus fiddling with clothing which could be ascribed to many conditions including pure nervousness. I know I'm impaired socially and have sensory issues, and I think totally in pictures which can muddle my understanding of what is really being said, making me seem a bit slow and stupid. In online tests, I would score very highly on the spectrum, but online tests aren't all very definitive.

My recommendation is to contact the National Autistic Society. They sent through to me paperwork for all autism specialists within a 100 mile radius of my home (though their interpretation of 100 miles seemed nearer to 200)! There was helpful information about approaching my GP, pointing out that the Autism Act 2009 entitles every UK adult to a proper diagnosis, and to ask for referral to one of those specialists (ie not just a regular psychiatrist who treats mental disorders as opposed to neurological disorders). The autism services are exactly that - they have specialist doctors who seem extremely knowledgeable.

My appointment was a good 2.5 hours. The doctor was nice, said from the outset that the process was not about tripping people up, but spending time getting to the bottom of anything and everything that might be on the spectrum. Being 47, I had no school reports or anything like that, and older relatives would be no help, but I took my partner with me (who was a GREAT help)! The consultation mainly entailed a very relaxed and informal question-answer session (both me and my partner were questioned). At the end, the doctor said I ticked every box for Aspergers, and a plan for further sessions would be put into place (for learning coping strategies and the like), so despite cuts, it seems the autism programme IS being rolled out somewhat belatedly.



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29 Aug 2014, 8:03 pm

a few users have confused the OP,he is in the UK; am guessing england which uses the ICD manual, this doesnt follow the DSMs latest criteria it still sees aspergers,autistic disorder etc as seperate.
am guessing this particular doctor doesnt want to be diagnosing people unless they do happen to have significant impairment in a part of their life because of the number of very mild or borderline cases being diagnosed which will be diluting the overall label and putting extra pressure on already stretched high functioning ASD funding & services.


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29 Aug 2014, 8:35 pm

To be fair, if you're functioning okay, I don't see the need for seeking out a diagnosis either. The only reason I bothered is because I wanted to know if being on the autistic spectrum was why I hadn't been able to cope with life. I'm obviously at the higher end of the spectrum (no learning difficulties), but that hasn't stopped me from f**king my life up. From early childhood I was badly bullied by my brothers and utterly unable to relate to them in any way. I was booted out from nursery school for being weird. The headmistress of my primary school suggested to my mum I should see a psychologist (she never took me to see one). I then somehow muddled through middle and high school, but after that my life fell apart. I couldn't hold down any job for longer than a few weeks (months at most), kept on dropping out of college, couldn't make any new friends and was incapable of having a relationship. I also couldn't manage to leave home, despite being unhappy there and having a bad relationship with my dad.

I could only dream of getting a PhD, being in a good job and having a supportive partner. Not that I begrudge anyone who achieves those things; but I kinda have to wonder how socially impaired you really are if you have achieved them.

Anyway, after years of spiralling illness (physical and mental), I'm hoping to make another go of things. Probably frakk it all up again, but might as well try before I die. (Am almost 40.)



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29 Aug 2014, 9:40 pm

I think rather than ask them for a diagnosis they are reluctant to give someone who functions so well, you'd be better off asking about help whatever concerns you have. That ensures you get some relevant advice.

Edited to add: does she have friends and family she spends time with? If the communication and social interaction difficulties are not present with them, perhaps something else is causing the difficulty. With AS and autism, you are who you are. Just more comfortable and better understood in some circumstances than in others.