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cyberdad
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16 May 2021, 4:40 pm

Fenn wrote:
The ICD-11 moves Asperger under Autism. So it is not just the DSM.


Which means the OPs GP is talking crap.



kraftiekortie
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16 May 2021, 4:42 pm

I believe they’re still using the ICD-10 most of the time.



Fenn
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16 May 2021, 4:45 pm

You can see it here:

https://icd.who.int/dev11/f/en

Just type Asperger in the search box.


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Indecisivemoo1
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16 May 2021, 7:22 pm

The experience i had was somewhat similar in that the psychologist just said i have Aspergers but its not the same as autism. I wasnt tested or at least i was not told i was. I never filled out paperwork. I am not even sure i am officially diagnosed on paper. I didnt actually go to see a psychologist for any diagnosis. I went because something major occurred in my life and it left me unable to function. I was then officially diagnosed with adhd and am on meds now. 2 yrs into talking with my psychologist he says i also have aspergers. I didnt get any kind of write up. Hes a pretty chill dude. The only time i got a write up about diagnosis was when i asked for one but it was just explaining treatment plan and what he thinks i have etc.. so theres other things in the list like major depression, ptsd, . How do you even know if you were diagnosed ? He has a lcpp-s so in my state he can diagnose as he sees fit. I keep reading people pay a lot of money to get tested by someone and pay for a diagnosis on paper? He is a specialist for adhd , asd, though but he is who they put me with when i came in originally for a sceening for who they would set me up to talk with..



cyberdad
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17 May 2021, 5:08 am

Indecisivemoo1 wrote:
The experience i had was somewhat similar in that the psychologist just said i have Aspergers but its not the same as autism.


How does this work if both the ICD10 and DSMV both only recognise Autism



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17 May 2021, 5:47 am

Psychologists not keeping up with the times.

The one who diagnosed me seemed to be using a mixed methodology using a guided interview designed for autism diagnosis but also a questionnaire which I believe was developed for Aspergers, before they merged. (Apparently I'm 'severe' on the Asperger scale but barely Level 1 on the general autism, which goes to show how different those diagnostic tools are). I believe the diagnostic tests may have been standardised recently, so I'm not sure that would still pass muster.

Re. NDIS, I actually got some funding for my 19 year old son, as he'd never received any previous support, which meant he qualified for early interventions. (Yeah, I don't know how they figure a 19 year old gets early interventions, but whatever, can't complain).
I wanted the funding to get him into programs for transitioning to adult life - help from the OT with learning to manage his time and do the things he needs to do (he has really bad executive function issues), help from employment services to get practice applying for jobs etc.
The problem I'm having is all the support programs are fully booked up so we can't get him onto those he needs. So we're underspending except on management fees, which is disappointing and a terrible waste all round.
(Plus it's hard that I have to do all the chasing around trying to get him onto the programs, because the funding wasn't enough to get a support worker to help him with it - and the executive function issues mean he can't/won't do it for himself).

I'm also worried that with the new independent review process, he will no longer qualify for funding. With Asperger kids / young adults, getting on the NDIS is definitely not a given. Even now you have to be at least Level 2 autism to be sure of qualifying. With the new review I suspect they'll be asking questions like: 'can you take a bus by yourself?' to which my aspie son will answer 'yes' (because he's done it once). But that doesn't make him independent.



kraftiekortie
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17 May 2021, 5:53 am

The ICD-10 still has Asperger’s.

It’s the ICD-11 which has sublimated Asperger’s.



cyberdad
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17 May 2021, 6:19 am

kraftiekortie wrote:
The ICD-10 still has Asperger’s.

It’s the ICD-11 which has sublimated Asperger’s.


So shouldn't doctors be using ICD11?



Fenn
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17 May 2021, 11:44 am

If I was going for a diagnosis now I would want a doctor (MD or PhD) who was at least familiar with the state-of-the-art in Autism and Asperger diagnosis. It is possible the individual professional would still "disagree" with the majority, like a supreme court justice might disagree with the majority opinion. I personally would not want someone who was unaware and making it up as they went along. If I were looking for someone at least part of what I would do is look at his/her credentials - what is all that alphabet soup after the name all about. I would also want to educate myself as much as possible so I didn't have to blindly go by what ever the person said. I would also ask for personal recommendations from people I trusted - and see if this person had published anything (many do these days) and read it or part of it to get an idea of the point-of-view.

I would do many of the same things that I would do if I was buying a car or a major appliance, since it is likely to cost me as much money (or nearly as much) and have a much bigger impact on my life.

I have gotten conflicting diagnoses in the past so I have learned to take a "professional opinion" with a grain of salt and realize that even an expert can be wrong sometimes, and not everyone with an office and a business card (or a web site and a zoom account) is really an expert. Even a license or a professional degree is no guarantee of competence. Buyer beware.

I have also learned to interview professionals like I would do if I were hiring an employee - this person is in fact going do be doing some work for me.

By analogy - I may not be a plumber, but I surely don't want to hire a bad plumber who is going to cost me time money and trouble that a better plumber would not. Same with an auto mechanic - I have had good and honest ones and bad and dishonest ones. I am not an auto mechanic but I can get second opinions and to careful comparison shopping and read up.
I don't have to trust the first one I find.


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kraftiekortie
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17 May 2021, 1:31 pm

The transition to a new diagnostic format take time.

I believe most diagnosticians still use ICD-10--but they use DSM-V almost exclusively now.

Even in 2016, they were using ICD-9; the full transition to ICD-10 didn't occur until 2017.



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17 May 2021, 1:40 pm

MrsPeel wrote:
I'm also worried that with the new independent review process, he will no longer qualify for funding. With Asperger kids / young adults, getting on the NDIS is definitely not a given. Even now you have to be at least Level 2 autism to be sure of qualifying. With the new review I suspect they'll be asking questions like: 'can you take a bus by yourself?' to which my aspie son will answer 'yes' (because he's done it once). But that doesn't make him independent.


My daughter had to deal with questions like that. There's a big difference between "can you" and "what happens if ..."

Yes she can take a bus, but what happens is she'll neurose about it for days prior which causes her to lose sleep and stop eating. She'll shut down and get very anxious, causing arguments in the house and disrupting everyone else. Then she'll be on the bus and 9 times out of 10 she'll get lost, but won't tell anyone so she'll be late for her appointment and sit on the bus helplessly until she gets the nerve to step off at a someone familiar place. She might end up needing to Uber home. After the bus ride she'll shut down for another week ruminating about it and being stressed about the social / sensory overwhelm involved, so she'll close herself up in her bedroom, drink too much wine, and be so overtaxed that she won't do her laundry or participate in any other chores. Then she'll start to worry about what's wrong with her mental health to cause this reaction, so she'll be up 24/7 reading internet articles about shutdowns and social overwhelm.

I told her to answer the questions truthfully with answers like this: "Well, in theory I can take a bus. Here's what's happened in the past, though ..."



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17 May 2021, 6:58 pm

The only official difference between the two, as far as I can tell, is that Asperger's didn't have a speech delay.

Unofficially, however, people with Asperger's were/are more likely to show signs of a proposed condition, named developmental visual spatial disorder. In popular culture, it's more commonly known as a non-verbal learning disability. The criteria for this are:

DEVELOPMENTAL VISUAL SPATIAL DISORDER - PROPOSED CRITERIA:
A) Visual spatial abilities are below expected level for age, given opportunity for skill learning.

B) Skills in two or more of the following areas are below expected level for age:
1) Fine motor skills
2) Mathematical calculations
3) Visual executive functioning
4) Social abilities

C) The above impairments significantly interfere with activities of daily living and impact academic/school productivity, prevocational and vocational activities, leisure and play.

D) Onset is in the early developmental period.

E) Motor skill difficulties are not better explained by intellectual delay, visual impairment or other neurological conditions that affect visual spatial abilities.

If I'm not mistaken, those diagnosed with "classic" autism often had more significant sensory sensitivities than those diagnosed with Asperger's. I could be wrong though.


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cyberdad
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18 May 2021, 3:12 am

My guess some these doctors think they are reducing the stigma by calling the diagnosis Aspergers.



Fenn
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18 May 2021, 9:34 am

For an adult - the real question is a very practical one: why do you want a diagnosis? Is it just for your own piece of mind or sense of self? Or do you want accommodations for work or from the government? Have you heard about a treatment and you want to use the diagnosis in order to get the treatment?

Once you are clear, yourself, why you want a diagnosis then work backwards from there: who does the government consider competent or reliable to do a diagnosis? What documentation does your HR department say you need for accommodations? What are the laws involved and what, exactly, do they say? Do you even need a diagnosis at all for your own sense of self or for treatment? Does your insurance company have any rules you need to know about? Will they even pay for the treatment you want if you DO get a diagnosis? Will they partially reimburse you for "out of network".

I am a 2e and I have two 2e sons. For the forums and on-line communities (and "in real life" communities) I have participated this makes me unusual (statistically speaking). My oldest needed a diagnosis for accommodations in the public high school. He had been misdiagnosed as hearing impaired by the school nurse and his kindergarten teacher. We then got an audiologist to refute that diagnosis. We had him evaluated (a full work up) by a large teaching hospital the next state over (the local children's hospital was not doing this sort of work up at the time). After months of waiting we got an evaluation by a grad student which was signed off on by the PhD "expert" who never really did an evaluation. They identified high IQ (which a school might label "gifted and talented") and "at risk for ADHD". The school wanted to fight us on the "gifted and talented" recommendation made by the "expert". We moved him to another school and got him into a "Spanish Immersion" program, which (for complicated political reasons) evaluated all new students for high IQ and high scores on nationally standardized tests - at above 80th percentile - which effectively made it a full-time full-day gifted and talented program (GT programs in the USA typically have a evaluation program with exactly those criteria - though the percentile cut-off may be higher or lower depending on district - and the programs in our area were pull-out "enrichment" programs - not full day - usually a few hours a week). In first grade the first grade teacher spontaneously decided he might be GT (we hadn't shared the previous results because of all the push-back we got from the first school). He was then in "Spanish Immersion" and the GT pull-out program. GT have him a IEP - and there we reintroduced the previous findings and pushed for other accommodations (essentially without a diagnosis). We basically came in the side-door and got the accommodations on a hand-shake. When he moved from the "Spanish Immersion" (which ended at age 10/11 after 5th grade) we kept the handshake accommodations (same staff people) but they added speech pathology. Moving to high school they balked and refused accommodations without a diagnosis. We then got a private DSM diagnosis or ADHD and the school reevaluated him and diagnosed ASD-HF. I made the private and school psychologist meet on the phone and confirm each other's diagnoses - and also go back over the (newly released) DSM-V quantitative measures. Either the ADHD or the ASD diagnosis would have "unlocked" the school accommodations. Under DSM-IV the ADHD diagnosis would have excluded the ASD diagnosis / and visa versa. Under DSM-V he could be diagnosed with both. The REASON we god the evaluation was to "unlock" the school accommodations - which were based on school rules which were based on USA Federal (nation wide) law. The law and the school rules used the word "Autism" but the DSM represented the "definition" of that word. It was a complicated Rube Goldberg device kind of relationship between all the things. Also the private ADHD diagnosis didn't "count" until it was confirmed by the school psychologist (I never did find out if this was license or school rule, but by getting both the private and school psychologist to confirm each other's diagnosis it bypassed any block that that represented. In the end we ended up with the school system continuing the accommodations they had already given in the lower grades - which they knew were working - but didn't want to pay for in High School unless they had to. Once all the boxes were checked off they were quite helpful, but NOT until.

So - that is why we "wanted" a diagnosis for my oldest son. And how we got a diagnosis followed from why we wanted one. It was a very long process - and it was not fun. For myself (as an adult) I am not sure if I really need a diagnosis of ASD (I have one for ADHD). For my younger son - we are still on the road - he currently has a diagnosis of GT and ADHD. If that is enough we will stick with those two.

I am personally not convinced that ADHD and ASD are really two separate things, or really one multi dimensional spectrum - at the genetic or biophysical level. At the level of the law and the DSM they are clearly not the same. In the USA we don't use the ICD where the DSM will serve - but I don't want to be unaware of it just for my own education.

Sorry for info-dumping. It is hard to get just one thing out of my head - like a jar of paperclips.


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18 May 2021, 11:25 am

Usually the differences with Asperger's:-

- Wants to, learns to, or can mask and appear NT, some even from a young age

- Less obvious or less stereotypical

- Usually develops typically in the first 3 or 4 years of life, symptoms sometimes don't appear until they start school (not in every case), and generally doesn't have speech delays


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cyberdad
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18 May 2021, 4:44 pm

Joe90 wrote:
Usually the differences with Asperger's:-

- Wants to, learns to, or can mask and appear NT, some even from a young age

- Less obvious or less stereotypical

- Usually develops typically in the first 3 or 4 years of life, symptoms sometimes don't appear until they start school (not in every case), and generally doesn't have speech delays


Which is what's called "high functioning autism" nowadays.