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Mona Pereth
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20 Aug 2019, 10:57 am

cyberdad wrote:
I think you are overestimating the capacity of people to delineate and navigate the historic technicalities of these terms, here on WP the acronym HFA is now synonymous with Aspergers.

Hmm. I was under the impression that most people who have been around here for a while do understand the difference.

cyberdad wrote:
Secondly you are wrong about HFA anyway. The old DSMIV classification for Aspergers was an IQ > 70 + no speech delay. A person with a speech delay could not have their IQ tested because of language/comprehension which means they automatically get labelled autistic.

That's true if they were being tested before they learned to talk. Once they learned to talk (very late), then they could be given an IQ test, but their diagnosis wasn't usually changed to Asperger's. They were still, in most cases, considered to have "autistic disorder" (or PDD-NOS) due to their history of significant speech delay.

Or at least that's how it was supposed to work. In practice, there was quite a bit of variation in how the diagnostic criteria were applied.

But in any case, HFA was distinct from Asperger's. HFA referred to a person with "autistic disorder" who had learned to talk (very late) and then got an IQ score over 70, whereas Asperger's was supposed to be diagnosed only in people who had no significant speech delay.

EDIT: Looking at Is There a Difference Between Asperger's Syndrome and High-Functioning Autism on Tony Attwood's site:

Quote:
There has been research comparing the cognitive profile of adolescents with autism and Asperger's syndrome. The studies have examined the cognitive profile of what may be called 'High Functioning Autism', that is children with a diagnosis of autism with an Intelligence Quotient in the normal range, i.e. above 70. The term High Functioning Autism has been used in the past to describe children who had the classic signs of autism in early childhood but as they developed, formal testing of their cognitive skills indicated a greater degree of intellectual ability with greater social and adaptive behaviour skills than are usual with children with autism. Their clinical outcome was better than expected.

Tony Attwood goes on to note that the only significant difference between HFA and Asperger's syndrome is personal history.

(And that's the reason why Asperger's was eventually gotten rid of as a separate diagnosis.)


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


vermontsavant
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20 Aug 2019, 12:19 pm

its been said twice,a person with no speech CAN be given an IQ test


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Mona Pereth
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20 Aug 2019, 2:07 pm

vermontsavant wrote:
its been said twice,a person with no speech CAN be given an IQ test

Yes, if they are capable of some other language-based form of communication. They have to at least be able to understand a request (written or spoken) to make some choice (at least via pointing to pictures, if not via typing, writing, sign language, etc.).

I'm sorry my previous post neglected the category of people with the DSM IV's "autistic disorder" who were nonspeaking but nevertheless "high functioning" in the sense (1) having learned some other language-based form of communication and then (2) having gotten an IQ test score greater than 70.

These non-speaking HFAs are obviously different from people with Asperger's syndrome, whereas speaking HFAs don't significantly differ from Aspies except by developmental history. This lack of substantial difference between speaking HFAs and Aspies, other than by history, is the main reason why Asperger's syndrome was eliminated as a separate category.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


vermontsavant
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20 Aug 2019, 2:45 pm

Mona Pereth wrote:
vermontsavant wrote:
its been said twice,a person with no speech CAN be given an IQ test

Yes, if they are capable of some other language-based form of communication. They have to at least be able to understand a request (written or spoken) to make some choice (at least via pointing to pictures, if not via typing, writing, sign language, etc.).

I'm sorry my previous post neglected the category of people with the DSM IV's "autistic disorder" who were nonspeaking but nevertheless "high functioning" in the sense (1) having learned some other language-based form of communication and then (2) having gotten an IQ test score greater than 70.

These non-speaking HFAs are obviously different from people with Asperger's syndrome, whereas speaking HFAs don't significantly differ from Aspies except by developmental history. This lack of substantial difference between speaking HFAs and Aspies, other than by history, is the main reason why Asperger's syndrome was eliminated as a separate category.
the original difference between autistic disorder and aspergers was classic autism meant delay in speech or no speech but precocious fine motor ability.
and aspegers meant delay in fine motor skills but speech was precocious.and then like you pointed out by age 6 there wasnt much difference between an aspie and an HFA so they merged to level 1 autism


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20 Aug 2019, 7:18 pm

vermontsavant wrote:
cyberdad wrote:
Mona Pereth wrote:
Second, under the DSM IV, HFA was not the same thing as what used to be called Asperger syndrome. "High-functioning autism" was an informal label given to people who had been diagnosed with "autistic disorder" but who were not intellectually disabled.


I think you are overestimating the capacity of people to delineate and navigate the historic technicalities of these terms, here on WP the acronym HFA is now synonymous with Aspergers.

Secondly you are wrong about HFA anyway. The old DSMIV classification for Aspergers was an IQ > 70 + no speech delay. A person with a speech delay could not have their IQ tested because of language/comprehension which means they automatically get labelled autistic.
under the old system a person who an HFA meaning having autistic disorder with high inteligence could have there IQ tested.there IQ'S were typicaly average because of the speech delays


Sorry...In the old system there was no such thing as HFA...you were either autistic or Aspergers....people projecting their views on what they think happened doesn't change what actually took place pre-2012



Mona Pereth
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20 Aug 2019, 7:48 pm

cyberdad wrote:
Sorry...In the old system there was no such thing as HFA...you were either autistic or Aspergers....people projecting their views on what they think happened doesn't change what actually took place pre-2012

"HFA" was not an official term. However, there did exist people diagnosed with "autistic disorder" who eventually learned to talk after a long delay, and who then got average-to-high IQ scores. These people were unofficially labeled "HFA," and were considered a distinct category from the people diagnosed with "Asperger's disorder," who were not supposed to have had any "clinically significant" speech delay. However, there turned out to be no significant real difference between HFAs and Aspies apart from their developmental history.

Please see the quote from Tony Attwood (one of the world's best-known experts on what was then called Asperger's syndrome) in one of my previous posts on this page.

Also, have a look at the actual DSM IV diagnostic criteria for "autistic disorder" and "Asperger's disorder". Note the absence of any requirement that people diagnosed with "autistic disorder" must have a low IQ, or that they must never learn to talk even after a long delay.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


Last edited by Mona Pereth on 20 Aug 2019, 8:35 pm, edited 2 times in total.

JustFoundHere
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20 Aug 2019, 8:02 pm

Mona Pereth wrote:
cyberdad wrote:
Sorry you have to excuse my confusion

Asperger / Autism Network (AANE)
Autism Spectrum. Autism Spectrum/HFA resources

I read this organisation encompasses the "spectrum" but then you are focusing on the urgency to find "friends/allies for the HFA community?

Why don't you just call this organisation for what it really is....an Asperger Network (AN)

First off, the people in charge of that organization (including its name) are not here on Wrong Planet. JustFoundHere is, apparently, an admirer from afar who wishes there were an organization where he is, in California, that offered all the same services as AANE. (JustFoundHere, correct me if I'm wrong.)

Second, under the DSM IV, HFA was not the same thing as what used to be called Asperger syndrome. "High-functioning autism" was an informal label given to people who had been diagnosed with "autistic disorder" but who were not intellectually disabled.

The three severity levels of ASD under the DSM 5 do NOT have a one-to-one correspondence with the three DSM IV diagnoses of "autistic disorder," PDD-NOS, and "Asperger's disorder." The DSM 5 severity levels cut across the DSM IV categories.

Had I myself been diagnosed under the DSM IV system, my guess is that I would have been diagnosed not as "Asperger's disorder" but either "autistic disorder" or PDD-NOS, I'm not sure which. Technically I could NOT have qualified for Asperger's because I didn't start talking until I was four years old. Technically also my boyfriend was mis-diagnosed with Asperger's, because he didn't start talking until he was four either (and, in his case, only with the help of a speech therapist, and he still has a speech impairment). So he too should have been diagnosed with either "autistic disorder" or PDD-NOS, I'm not sure which.

cyberdad wrote:
Now it seems Aspergers/HFA communities have appropriated the terms autism and spectrum for themselves but want to maintain the apartheid from the old days in excluding moderate-low functioning autistic people from their little plans of creating some type new network with NT allies.

I actually think things were more straight forward in pre-DSMV days before 2013 when Asperger organisations didn't hide the fact they wanted nothing to do with the term "autism" because of the stigma/shame they felt from the wider NT community.

People at different severity levels do have different needs. For example, at Level 1, many of us are capable of productive work if only we can find a sufficiently autistic-friendly workplace. So a big problem for many of us is finding employment. But for most people at Level 3, this is simply not an issue as they are not capable of being employed at all.

It is, in my opinion, legitimate to have organizations that address the specific problems of people at Level 1, just as it is also legitimate to have organizations that address the specific problems of people at Level 3, as well as organizations that embrace all of ASD.



Okay - to clarify on just what roles AANE may, or may not play: First of all, whether, or not AANE will develop a presence here on WP is the least of our concerns - it doesn't matter.

Second: I'm encouraging greater awareness of AANE with govt. supported services serving clientele with developmental disabilities (which increasingly includes clientele on the Autism Spectrum, e.g., HFA). Doesn't AANE have a presence at conferences - with nationwide attendance of people serving clientele/colleagues on the Autism Spectrum?

Related: The term 'admire' is misleading. I don't admire AANE from a distance. I'm pointing-out that AANE seems best equipped to advise on best practices (which in-itself has proven refreshing to point-out) in serving clientele on the Autism Spectrum; that is it's possible for AANE to correspond from a distance using twenty-first century communications.

From my personal experiences: I've pretty-much mentioned AANE to my state govt. supported advisor (I was advised to mention AANE to this agency's 'Autism Coordinator').

Here in CA, the State's Regional Center Network supports resources geared towards developmental disabled clients - that is progress has been very slow in understanding the needs of HFA clientele - who have become newly eligible to receive govt. supported services.

I was referred to The ARC of San Francisco (as parts of the SF Bay Area are "ahead of the curve" on HFA understanding). The ARC of SF is the closest thing to a full-service center offering resources for developmental disabilities, and includes the HFA group http://www.AASCEND.org .

I don't live within the SF District, I'm only allowed advisory feedback (where I'll mention AANE as an example for the ARC of SF to investigate). As the ARC of SF receives CA govt. support, the gatekeeper entity will not allow anything more than advisory feedback.

In whatever state, or metro-area your'e located - if you receive support services which appear way too slow in understanding HFA, please mention AANE to relevant staff. Does anybody here receive govt. supported services delivered through non-profit, and private agencies?

P.S. With mention of diagnostic criteria e.g., 'DSM IV' here on WP, I have personally felt that revisiting diagnostic criteria is not relevant. The purpose of diagnostic criteria applies towards receiving services, and benefits.



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20 Aug 2019, 9:16 pm

vermontsavant wrote:
its been said twice,a person with no speech CAN be given an IQ test

No they cant...

They can do a non-verbal Raven Matrices test



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20 Aug 2019, 9:38 pm

Mona Pereth wrote:
"HFA" was not an official term. However, there did exist people diagnosed with "autistic disorder" who eventually learned to talk after a long delay, and who then got average-to-high IQ scores. These people were unofficially labeled "HFA," and were considered a distinct category from the people diagnosed with "Asperger's disorder," who were not supposed to have had any "clinically significant" speech delay. However, there turned out to be no significant real difference between HFAs and Aspies apart from their developmental history.
Please see the quote from Tony Attwood (one of the world's best-known experts on what was then called Asperger's syndrome) in one of my previous posts on this page.


Yes I like many read Atwood and Baron-Cohen and personally found nothing of particular value in their research other than consoling parents in a soothing manner who were not capable of reading/decoding the same research for themselves.

My original post was directed at the OP who has now explained himself over the use of the term "HFA". I'm satisfied with his explanation.

On the other hand I do take slight umbridge at a few things you posted so I'll respond to those specifically;

"HFA was not an official term" - It's called improvisation. The inexact science of pigeonholing neurodevelopment disorders into convenient labels was actually of little value to parents other than the psychiatric field realised they bumbled on creating two separate disorders despite (at the time) having no knowledge on genetic or neurological differences. I call that stupidity

"HFA refers to who eventually learned to talk after a long delay, and who then got average-to-high IQ scores" - I call Bulls**t on this. If you get a chance go back to youtube videos created on HFA back in 2012 and the term related specifically to children who displayed hyperlexic skills in reading, writing and numeracy but were labelled "non-verbal". The problem here was what was mean't by non-verbal. Could you be non-verbal and not read? write? - speech mean't what, comprehension? ability to parrot? echolalia? the experts didn't have a clue....

Having a speech delay means you are also delayed in using speech in social settings, some people catch up but its likely many take longer to catch up and miss out on important developmental milestones and socialisation.

On a final note ID in people with autism is not really that well understood either. Autistic people assumed to have ID are probably not able to express themselves or their potential abilities. Again the investment in time or research into these areas hasn't yielded how to tap into their minds.



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20 Aug 2019, 11:50 pm

cyberdad wrote:
"HFA refers to who eventually learned to talk after a long delay, and who then got average-to-high IQ scores" - I call Bulls**t on this. If you get a chance go back to youtube videos created on HFA back in 2012 and the term related specifically to children who displayed hyperlexic skills in reading, writing and numeracy but were labelled "non-verbal". The problem here was what was mean't by non-verbal. Could you be non-verbal and not read? write? - speech mean't what, comprehension? ability to parrot? echolalia? the experts didn't have a clue....

A much older (than 2012) use of the term "high-functioning" in reference to autism can be found in Jim Sinclair's History of ANI, written back in 2005 about events that took place back in the 1990's. The "high-functioning" autistic people mentioned in that article, including Jim Sinclair himself, were mostly people who had learned to talk very late (at age 12, in Jim Sinclair's case), and were mostly people who had been diagnosed with "autism" ("autistic disorder"), NOT "Asperger's syndrome" (although the article does mention one person diagnosed with the latter as well).

There are also some well-known autistic people who can't speak but who can read and type; some of these are quite articulate and clearly not intellectually disabled either. However, the term "high functioning autism," as used (informally) during the DSM IV era, certainly did not refer exclusively to these non-speakers.

Temple Grandin is a famous example of a person who was diagnosed with "autism" (NOT Asperger's) who couldn't speak as a child but eventually learned to speak with the aid of speech therapy and was eventually able to get a Ph.D. (See a brief bio of her here.)

See also the quote from Tony Attwood in an earlier post of mine in this thread. Note his use of the term "high-functioning autism" to refer to people who had been diagnosed with "autistic disorder" (not Asperger's) but who learned to talk late and had average-to-high IQ's.

Another documented use of the term "high-functioning autism" from the DSM IV era: See the article Atypicality, IQ, and Diagnostic Categories by James Coplan MD, Psychology Today, Jun 20, 2010. See his diagram showing the relationship amongst "AUTISM" (apparently meaning "autistic disorder"), PDD-NOS, and Asperger's. Note that what he calls "high functioning autism" is a subset of "AUTISM"; it is not the same thing as Asperger's.

cyberdad wrote:
Having a speech delay means you are also delayed in using speech in social settings, some people catch up but its likely many take longer to catch up and miss out on important developmental milestones and socialisation.

Yep. I had a speech delay, and I struggle with casual conversation more than many of the Aspies I've met at the local support group. Nevertheless, the difference between the Aspies (without speech delay) and me (with speech delay) is insignificant compared to the difference between me and a severely-disabled autistic person who needs 24-hour support. I'm able to earn money, although I am underemployed. So it makes sense to classify both Aspies and people like me as ASD Level 1.

cyberdad wrote:
On a final note ID in people with autism is not really that well understood either. Autistic people assumed to have ID are probably not able to express themselves or their potential abilities. Again the investment in time or research into these areas hasn't yielded how to tap into their minds.

Unfortunately it hasn't been emphasized at all in autism research either. It should be given much higher priority than it is now, in my opinion. Do you agree?


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


cyberdad
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21 Aug 2019, 4:02 am

Ok then lets just accept HFA means different things to different people...granted...

I also neglected poor old PDD-NOS...apologies...



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21 Aug 2019, 5:24 am

cyberdad wrote:
vermontsavant wrote:
cyberdad wrote:
Mona Pereth wrote:
Second, under the DSM IV, HFA was not the same thing as what used to be called Asperger syndrome. "High-functioning autism" was an informal label given to people who had been diagnosed with "autistic disorder" but who were not intellectually disabled.


I think you are overestimating the capacity of people to delineate and navigate the historic technicalities of these terms, here on WP the acronym HFA is now synonymous with Aspergers.

Secondly you are wrong about HFA anyway. The old DSMIV classification for Aspergers was an IQ > 70 + no speech delay. A person with a speech delay could not have their IQ tested because of language/comprehension which means they automatically get labelled autistic.
under the old system a person who an HFA meaning having autistic disorder with high inteligence could have there IQ tested.there IQ'S were typicaly average because of the speech delays


Sorry...In the old system there was no such thing as HFA...you were either autistic or Aspergers....people projecting their views on what they think happened doesn't change what actually took place pre-2012
ever read Donna Williams or Temple Grandins books


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21 Aug 2019, 5:28 am

"High Functioning" was said in "Rain Man" back in 1988


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21 Aug 2019, 12:52 pm

SLOOOW down please! Let's reclaim, and reassess the original purpose of this discussion thread.

* Thread topic: 'Let's Also Encourage those Allied With HFA.' The discussions on diagnostic/clinical criteria e.g., DSM or the acronyms classifying the Autism Spectrum a.k.a. "labels" are confusing - detailed discussions of said criteria belongs in another discussion thread.

* The thread was placed in the 'Autism Politics, Activism, and Media Representation' - in short, a call for people living with (and concerned with) HFA to collectively take the most humble actions reflecting personal experiences with HFA (regardless of whether or not AANE is mentioned; yet going beyond.......just posting here on WP).

The objectives are to boost awareness; which can speed-up the progress in developing, and providing much needed resources.

Thank-you