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 Post subject: Aspergers and ASC dianosis
PostPosted: Mon Oct 05, 2015 3:36 pm 
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I have been increasingly thinking that I have a lot of aspergic traits and it has been suggested by others that I lack empathy and tact (I secretly classify everyone else as "timewasting blunderninnies"). I've been described as mercenary when I'm trying to just be efficient and it has been pointed out that I can come across as a bit rude in text. I did the Autism-Spectrum Quotient test and landed firmly in the "clinically significant levels of autistic traits" category, which is a non-diagnostic, but respected, indicator that a proper diagnosis might not be a waste of time.

I'm a special needs teacher by trade, so I'm fairly autism-aware. As in, I didn't just read a thing about it on the internet, it's what my career is based around.

Alternatively, I might just be a prickly introvert who likes to keep a really well-organised calendar.

Has anyone here gone through an autism or asperger's formal diagnosis that they feel comfortable talking about? Has a diagnosis (or lack thereof) had any impact on your life as an adult?

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Tue Oct 06, 2015 1:56 pm 
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Not sure if this is helpful, since I was diagnosed in the US and I know from my ex that the diagnosis process is a bit different in England, but I got a diagnosis for aspergers/autism (aspergers isn't really diagnosed anymore as a distinct thing in the US) about seven years ago.

The diagnosis: For me (and for my ex in England) it involved a full day of interviews and various tests for working memory, spatial reasoning, processing speed, verbal processing/skills, basically mapping cognitive capabilities as well as social processing/functioning. You can PM me if you want to know more details—there was a lot of testing so I'd have to go over my diagnostic report to remember what all we went through.

Impact? I'm not sure it's worth it as an adult unless you need significant workplace accommodations. The main purpose of my diagnosis is to make educational institutions give me extended time on exams and to evaluate me with disability in mind in the case of presentation skills, class participation, etc. where my verbal/auditory processing is TERRIBLE (e.g., I can either take notes in a lecture or understand what is happening but not both, and I am totally incapable of reading out loud). It may be useful if it means you can access social skill and/or executive functioning support (like when I was studying in Glasgow they gave me an autism mentor to help me keep on top of my life)? I don't know because this isn't something I really need.

It can also make life a bit more difficult as an adult though, especially if you disclose the diagnosis. People tend to talk down to you or assume that you don't know what you're talking about because you're developmentally disabled. I sometimes get into difficulties with disability services coordinators with the aspergers diagnosis where I'm both "not autistic enough" and autistic, so I wouldn't understand.

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Sun Oct 18, 2015 4:15 am 
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I accompanied Mr8 through a lot of the diagnostic process. He'd had some awful experiences of triage psych nurses trying to diagnose him in the past so was really anxious about it all.

We started by taking to his GP, who made a referral to a psychiatrist. She referred him on to the learning disabilities clinic where he met an awesome practitioner that had discussions with him about all sorts of things - what he was like growing up, spatial awareness, guessing peoples emotions based on their facial expressions - and she diagnosed him formally with AS. After that he had several sessions at the clinic to get to grips with what having AS meant to him, which was really helpful. It included work on understanding his sensitivities which was really useful, but he still cant go into an Ikea (too many people, too much light and noise) so doesnt even try.

He feels better for having been diagnosed and understanding his condition. As zwingtip said, its good for workplace accommodations. Mr8 really needed those. He still has to fight with middle management over them sometimes but he has OH on side now due to his diagnosis.

If you need any financial assistance there is also the potential to successfully apply for PIP.


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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Thu Oct 29, 2015 8:38 pm 
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i happened upon this post (well, it came up in a keyword search) half a day after making a GP appointment that will hopefully lead up to a psych evaluation. i saw a lot of doctors & other health professionals throughout my adolescence for school & emotional problems, but ended up with an assortment of dead-end diagnoses. autism wasn't one of them, but i've been wondering if it might have been overlooked. then again, i *did* only read stuff about it on the internet, and maybe i'm just a lazy cockup hoping i can tidily squeeze my numerous shortcomings into a convenient box.

any advice on how to prepare for the appointment? the receptionist advised me to write a list of bullet points, or preferably a letter to the doctor so she can read it prior to seeing me. should i send my parents a symptom checklist and ask if they recall me exhibiting any of them as a kid?

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Fri Oct 30, 2015 6:46 am 
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I was diagnosed at the age of six initially, and rediagnosed in my teens and 20's. A lot of very basic symptoms of Autistic Spectrum Disorders... like sensory processing issues, meltdowns, and shutdowns, are easy to miss in adults because we tend to have ways of masking them. I have a hard time recognizing people when I first see them out of the usual context and I'm often told that I'm being "psychotic and mean" as a result. I also have difficulty with certain types of recall under stress. I was very bad at responding appropriately to my own needs at work and in social situations before I started to accept the diagnosis. I think for some people though, the diagnosis might just be another label. Not everyone has trouble understanding themselves without a diagnosis, and I know plenty of people that just flat out oppose the use of terms such as "aspergers" even though they fit on the spectrum.


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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Tue Nov 10, 2015 9:28 pm 
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so i'm in the process of writing a letter briefing my GP about my appointment with her on Friday, and tonight i called my parents to go over it with me and maybe fill me in on anything i might have missed. my mom mentioned some things from my childhood like my frustrations with not being able to talk quite the way i wanted, my aversion to group projects in school, my delayed motor skills, my hand-wringing, and when she told me that i was never that great with eye contact i just started crying with relief. like i'm not just imagining this and maybe i really do have a neurological condition that affects my life in some significant ways. hopefully this leads to an official diagnosis. wish me luck?

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Wed Nov 11, 2015 7:33 am 
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Good luck Emperor TK! I hope you get the answers and support you need!

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Wed Nov 11, 2015 7:24 pm 
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Good luck! A diagnosis can be such a relief and open doors to support/mentoring if you need it.

(does anyone mind if we turn this into a general ASD thread?)
I'm currently super stressed because there's a chance my disability accommodations will be denied by my university because of the age of the documentation. My last assessment/diagnosis was five years ago and they want it to be current within three years. It is a permanent unchanging condition by virtue of being a developmental disability... Not to mention that re-diagnosis around here takes about 6 months to schedule and then $4000 out of pocket because no psychs take insurance.

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Thu Nov 12, 2015 3:23 pm 
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zwingtip wrote:
Good luck! A diagnosis can be such a relief and open doors to support/mentoring if you need it.

(does anyone mind if we turn this into a general ASD thread?)
I'm currently super stressed because there's a chance my disability accommodations will be denied by my university because of the age of the documentation. My last assessment/diagnosis was five years ago and they want it to be current within three years. It is a permanent unchanging condition by virtue of being a developmental disability... Not to mention that re-diagnosis around here takes about 6 months to schedule and then $4000 out of pocket because no psychs take insurance.

thank you, zwingtip & Tofulish!

now that you mention it, i recall the documentation from my assessment during high school being rejected by some board (probably a grad school or GRE) at the end of my undergrad for that very reason. one of the diagnoses was ADD (i guess they hadn't moved to the DSM-IV yet?) which, if it actually was ADHD, is another developmental disability that's not gonna suddenly go away. so yeah, that's annoying. i hope they take that into consideration so you don't have to go through an expensive, time-consuming, unnecessary process for bureaucracy's sake.

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Sat Nov 14, 2015 8:02 pm 
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Good luck! Dual diagnoses and fickle psychiatrists are always a pain in the butt imo. The spectrum is pretty complex, so sometimes it's hard to explain to people why certain things are challenges. I suppose the same applies for many that don't hold a diagnosis but have ASD traits.


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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Thu Nov 26, 2015 3:17 pm 
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Thank you everyone for what you have shared.

I'm going to see a GP on Tuesday to discuss referrals and things.

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Tue Dec 01, 2015 8:58 pm 
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Gulliver wrote:
Thank you everyone for what you have shared.

I'm going to see a GP on Tuesday to discuss referrals and things.

let us know how it went!

so i had my appointment a few weeks ago, which i should have written about earlier when it was fresh, but i never managed to get myself to focus on it (i seem to be having some language processing issues as of late). the GP thought that both ADHD and ASD sounded plausible, but they're covered by two completely different services, and unfortunately there's an 18 month wait for an assessment from the ASD service. i don't know if that's the case for all of the UK or England or just Bristol, and i don't remember exactly how i left things with the GP. maybe it's worth it to go private?

in other news, my parents told my sister that i think i might be autistic, and they said she was very understanding and supportive (because she's lovely like that). they also brought it up over Thanksgiving with my aunt, who is a mental health counselor, and she apparently said that Asperger's "would make a lot of sense" in describing me growing up. (i guess they're saying "Asperger's" even though it's not in the DSM anymore because "autism" is a scary word or something.) it is quite a relief knowing my issues might actually be A Thing and not me just blowing things out of proportion.

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Thu Dec 03, 2015 3:32 pm 
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i have a referral for a screening, and there's a wait of about three months.

The GP didn't really know much about it, to tell the truth. She admitted as much, which was good. She listened to me, asked if it was okay to do some checks and talk to some colleagues and called me later that day. all pretty good, if you ask me.

I think a private diagnosis would not have the same impact as an NHS one, if I am honest. The NHS is still seen as the gold standard from a diagnostic point of view. I work in special education and I think there's an unconscious bias against private diagnoses. Other fields may differ, but NHS=healthcare here, especially when dealing with public services (Access to Work funding for reasonable adjustments, for example).

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Thu Dec 03, 2015 7:06 pm 
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Gulliver wrote:
I think a private diagnosis would not have the same impact as an NHS one, if I am honest. The NHS is still seen as the gold standard from a diagnostic point of view. I work in special education and I think there's an unconscious bias against private diagnoses. Other fields may differ, but NHS=healthcare here, especially when dealing with public services (Access to Work funding for reasonable adjustments, for example).

ah, good to know. i don't mind waiting for a specialist, but a year and a half is quite a bit longer than i would like. do you know if it's possible to be referred to someone outside your local NHS network where there might be less of a wait?

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Sun Dec 06, 2015 10:34 am 
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EmperorTomatoKetchup wrote:
Gulliver wrote:
I think a private diagnosis would not have the same impact as an NHS one, if I am honest. The NHS is still seen as the gold standard from a diagnostic point of view. I work in special education and I think there's an unconscious bias against private diagnoses. Other fields may differ, but NHS=healthcare here, especially when dealing with public services (Access to Work funding for reasonable adjustments, for example).

ah, good to know. i don't mind waiting for a specialist, but a year and a half is quite a bit longer than i would like. do you know if it's possible to be referred to someone outside your local NHS network where there might be less of a wait?
The GP I spoke to actually said that it was likely they had a contract with a specific service (she had just got back from maternity leave so wasn't sure), so I would suggest not. You might be lucky and get a cancellation?

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Mon Dec 07, 2015 11:26 am 
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Ugh. I phoned (!!! this is a big deal for me) the accessibility office and my disability accommodations are still under review. They said "we're doing our best" and strongly implied that it's not their fault if they miss the deadline for my exam (8 days from now).

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Tue Dec 08, 2015 10:23 am 
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Ugh, stressy Zwing!

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Thu Feb 18, 2016 9:58 pm 
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i've got somebody to give me a referral, i think. the first appointment in November didn't seem to go anywhere, so i saw someone else at my health centre last week, who gave me an appointment with a mental health doctor. i felt like i didn't do very well presenting my case with him, and he seemed rather adversarial, but he told me he'd write a referral once i fill out & turn in the 50-question autism/Asperger's quotient test for adults. i found it a lot harder to answer than most other self-assessment forms i've filled out, since a lot of the questions are worded quite vaguely and/or asked about aspects of my personality i didn't have a very clear impression of. so i spent more than an hour going over the whole thing with my mom over Skype and another half hour or so with my partner, and with the answers they helped me decide on i scored 36 out of 50, which is in the "significant autistic traits" range. kind of nice to know i might be on to something and not totally wasting taxpayer money.

oh, and the person at the mental health service i've been in touch with spoke to the autism service people, and they said the wait is nowhere near as long as the doctor at my first appointment told me. the mental health doctor estimated 6-7 months, which is far more sensible than the 18 month wait i was originally told to expect.

my mom has been an absolute star through all of this. it seems like she might even be having fun with it, since the gets to recall stories from my childhood and we can have a laugh about how hung up on details i get. it's a sort of weird yet enjoyable bonding experience. i was already planning to visit my family in April/May, and i'm especially excited about it now that i'll be on a fact-finding mission for the eventual evaluation - watching home videos, talking to relatives, pulling together past documentation, and so forth.

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Sun Feb 28, 2016 3:16 pm 
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That's interesting.

I've got my first specialist appointment (as in, this is who I was referred to) on Wednesday. I think it's likely to be the first of several rounds of assessment (like the Great British Bake Off) or maybe a preliminary interview to see if actual screening is worthwhile (like the audition process for the Great British Bake Off).

Was the long assessment you did the EQ test from the Cambridge Autism Research Centre? The "Aspie Test" is quite enlightening, if not from a particularly reputable source.

There's a list of online self-assessments here. If nothing else, it's fun to do quizzes. Even ones I've done before...

I haven't spoken to my mother about this, because she'll not know what I'm talking about and freak out. I have told a select few friends, many of whom work with autistic people and/or have autistic friends, and the responses have varied between "that makes a lot of sense" (from my ex who knows me very well), "okay, well I'm here if you need me" (from a friend who works in SEN) and "no you don't, you're just selfish and antisocial" (from a friend who is well-meaning but also a big twit).

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Sun Feb 28, 2016 4:29 pm 
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I've just done a bunch of the quizzes/self-assessments. Most were produced by Simon Sasha-Cohen, who's a professor at the Cambridge Autism Research Centre.

From that site:
Spoiler: show
AQ: Score 33 (≈Average for ASD males)
EQ: 15 (< Average for ASD males, ≪ Average for NT males)
SQ: 59 (< Everything - I am actually a bit concerned about this, it's very low)
TFIS: 34 (< Everything)
Friendship Quotient: 57 (> Avg ASD, <Avg NT)
RAADS-R: 132 (significantly nearer ASD than NT),
  • Language 11 (≈Average for ASD males)
  • Social Relatedness 11 (≈Average for ASD males)
  • Sensory 20 (≈Average for NT males)
  • Circumscribed interests 30 (≈Average for ASD males)


I made an Excel chart. It's colour-coded. It's glorious.

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Mon Feb 29, 2016 5:50 pm 
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Gulliver wrote:
Was the long assessment you did the EQ test from the Cambridge Autism Research Centre? The "Aspie Test" is quite enlightening, if not from a particularly reputable source.

the questionnaire the doctor had me fill out was the AQ-50 by Simon Baron-Cohen. haven't done any others yet.

i checked back with the receptionist a few days ago, and the doctor did write the referral! and i should get a letter or something when there's a date for whatever comes next.

it might be time to talk to my in-laws about it now that i've officially been referred to a specialist. a few months ago i told my MIL about my past ADD diagnosis and interest in looking into it again, but i had to pick one or the other to investigate first, so i'd feel a bit dishonest if i didn't tell her what i ended up doing.

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Sat Mar 26, 2016 8:34 pm 
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today i told both my partner's parents that i might be autistic. neither was surprised, and my MIL even said she'd suspected it for years and almost suggested it as a more likely candidate back when i had the ADHD conversation with her. so that's another two votes of confidence, i guess.

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 Post subject: Re: Aspergers and ASC dianosis
PostPosted: Mon Apr 25, 2016 2:14 pm 
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I have now done three diagnostic interviews and a batch of tests. I get my results on Thursday or Friday this week. It was a strange experience. I talked a lot about how I almost never realise when I'm being rude and I've had to learn that when people ask you how you are they don't really want an answer usually. I don't think I picked that up until my mid-twenties. I talked about how sudden changes sometimes feel like I'm being hit with a car and that I don't know what to do at parties or in conversations sometimes.

I think I certainly have autistic traits but I don't honestly know if I'm on the spectrum enough to have a diagnosis. I guess I'll find out soon, though.

Also, it privately amuses me how "autistic spectrum" is near "spectral". If you have ASC and Cotard delusion do you have an autistic spectre disorder?

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