Any High Functioning Autistic people here?

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chssmstrjk
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24 Feb 2011, 1:33 pm

cyberdad wrote:
I'm new here and notice everyone here is an "Aspie" (or claims to have been diagnosed with Aspergers).
Just wondering how many of you are high functioning autistics? - i.e. you had a speech delay early in life.

A fair number of you (not all) seem to assoicate Aspergers with high function and genius in contrast to ASD and classical Kanners autism which you associate (rightly or wrongly?) with severe impairment.

Our local chapter of the Aspergers Society in Melbourne invited a prominent speaker on autism to give a talk in Melbourne Australia. The talk was on High Functioning Autism (HFA) and Aspergers and surviving school. The ticket was $90 (Aust) but members of the Asperger society recieved a 50% discount. To be a member you or your child must be diagnosed with Aspergers.

I emailed a rather irate letter to the organiser asking why parents of ASD children were not eligible for the discount - surely they should aslo be encouraged to attend given half the talk was on HFAs?. The rather terse response I recieved indicated that since the Aspergers society organised the talk only their members were eligible for the discount (end of matter). So why are HFA's not really considered Aspies? Isn't Temple Grandin an HFA?

Given in 2012 the DSM V will amalgamate Aspergers and HFA in the upper end of the autism spectrum (ASD) and Aspergers may vanish as a label are these societies and their members hanging on to this label as it bestows some sort of vestigal prestige?

I'd like to hear some views for any HFA's on this forum (if there are actually any on this forum)


When I was 3, I was diagnosed with PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified), which would nowadays be considered to be a form of high-functioning autism.



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24 Feb 2011, 8:04 pm

leejosepho wrote:
cyberdad wrote:
Perhaps, and yet ... people diagnosed will say "I'm proud to be an Aspie because Einstein, Mozart and Turing were all Aspies" ...

Whether AS or HFA or anything else, any human being might feel "blessed" or "gifted" or whatever else for one reason or another and then possibly also enjoy being seen (at least by oneself) in a given "class" of "group" of others like himself or herself ....


I'm not sure if you've seen Harry Potter and the Philosopers Stone (I'm unfortunately a Harry Potter tragic having read all the books and watched all the movies and collected the DVDs).

When Harry arrives at Hogwarts the 1st year students are sorted into their 4 houses by Dumbledore's sorting hat. The children do not choose their house, the hat chooses for them. The hat was aiming to allocate Harry to the Slytherin House as Harry's background and powers would be best accomodated there. However Harry wanted with all his will to be in the Griffindore house and pursuaded the Hat to change it's preference for where to allocate Harry.

I know this may be a bit childish but Harry did not accept something else (in this case a hat) choosing his destiny for him. He made his own destiny (or so the story goes).

I find labelling children into PDD-NOS, HFA or Asperger an unecessary burden (at this stage) and why should children be put into a label named after a psychologist (Hans Asperger) who we now know got it wrong.



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24 Feb 2011, 8:06 pm

chssmstrjk wrote:
cyberdad wrote:
I'm new here and notice everyone here is an "Aspie" (or claims to have been diagnosed with Aspergers).
Just wondering how many of you are high functioning autistics? - i.e. you had a speech delay early in life.

A fair number of you (not all) seem to assoicate Aspergers with high function and genius in contrast to ASD and classical Kanners autism which you associate (rightly or wrongly?) with severe impairment.

Our local chapter of the Aspergers Society in Melbourne invited a prominent speaker on autism to give a talk in Melbourne Australia. The talk was on High Functioning Autism (HFA) and Aspergers and surviving school. The ticket was $90 (Aust) but members of the Asperger society recieved a 50% discount. To be a member you or your child must be diagnosed with Aspergers.

I emailed a rather irate letter to the organiser asking why parents of ASD children were not eligible for the discount - surely they should aslo be encouraged to attend given half the talk was on HFAs?. The rather terse response I recieved indicated that since the Aspergers society organised the talk only their members were eligible for the discount (end of matter). So why are HFA's not really considered Aspies? Isn't Temple Grandin an HFA?

Given in 2012 the DSM V will amalgamate Aspergers and HFA in the upper end of the autism spectrum (ASD) and Aspergers may vanish as a label are these societies and their members hanging on to this label as it bestows some sort of vestigal prestige?

I'd like to hear some views for any HFA's on this forum (if there are actually any on this forum)


When I was 3, I was diagnosed with PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified), which would nowadays be considered to be a form of high-functioning autism.


Nice to hear from you :)



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24 Feb 2011, 10:09 pm

There are actually plenty of people on WP whose diagnosis is HFA, Kanner's, classic autism, LFA, PDD-NOS, Rett's, and atypical autism, as well as a bunch of other name variations and labels. WP did start out being Asperger's-focused, but there's pretty much people from all over the spectrum now, not to mention people who just don't fit into a single place on the spectrum--people whose cases are so hard to categorize that the doctors just throw up their hands and go, "Yeah, you're autistic. Let's leave it at that."

In adulthood, Asperger's and autism are indistinguishable--especially in the vast majority of cases where the individual has learned to speak and take care of himself. They are obviously different only in those cases where speech is absent into adulthood (and that would be less than 10%, as far as I can tell, and even in many of those cases multiple disabilities are involved so that you can't tell whether the speech is absent because the individual has, say, Down syndrome or CP, rather than because of the autism)... Realistically, Asperger's is simply a type of autism in which speech is not delayed. Of course, you can have classic autism without speech delay, too.

I should have been diagnosed with classic autism as a child; as an adult, my profile is closer to Asperger's. They are just too close together for there to be any meaningful difference.


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24 Feb 2011, 10:20 pm

cyberdad wrote:
I know this may be a bit childish but Harry did not accept something else (in this case a hat) choosing his destiny for him. He made his own destiny (or so the story goes).

I find labelling children into PDD-NOS, HFA or Asperger an unecessary burden (at this stage) and why should children be put into a label named after a psychologist (Hans Asperger) who we now know got it wrong.

Understood and well received!


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24 Feb 2011, 10:36 pm

When I was 5 back in the spring of 1980, I was diagnosed with Mild Autistic Tendencies, which would be classified as AS today.


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cyberdad
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25 Feb 2011, 1:28 am

Callista wrote:
In adulthood, Asperger's and autism are indistinguishable--especially in the vast majority of cases where the individual has learned to speak and take care of himself. They are obviously different only in those cases where speech is absent into adulthood (and that would be less than 10%, as far as I can tell, and even in many of those cases multiple disabilities are involved so that you can't tell whether the speech is absent because the individual has, say, Down syndrome or CP, rather than because of the autism)... Realistically, Asperger's is simply a type of autism in which speech is not delayed. Of course, you can have classic autism without speech delay, too.I should have been diagnosed with classic autism as a child; as an adult, my profile is closer to Asperger's. They are just too close together for there to be any meaningful difference.


You sound like the perfect poster boy for why Aspergers and HFA should be malagamated. Based on Attwood's research plus DMS V the Wrong Planet people should take the plunge and ditch the labels.

Ok so lets keep the autism spectrum but just have a spectrum gradient.
low functioning - (no speech substantial sensory issues)
Functioning - (speech but coupled with substantial sensory issues)
High functioning - (speech and subject has largely mitigated sensory issues)



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25 Feb 2011, 2:11 am

Personally I can't wait for "Asperger" to disappear from the lexicon only because of its unfortunate American pronunciation. I'm OK with autism spectrum disorder.



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25 Feb 2011, 2:27 am

(Re: doing functioning levels) Oh please please please no.

I can't (too tired) rewrite everything I've ever said about functioning levels before, the ethics, the many other things.

But one of the most obvious reasons they don't work is because of the number of different things that autism affects in terms of functioning. In order to have functioning levels, you have to choose only about one or two. And who gets to choose?

Off the top of my head, here are several areas of functioning that can all be affected by autism:

* Speech
* Writing
* Receptive language
* Unusual patterns of expressive language (rather than just delays, which in many ways can be easier to deal with)
* Inertia
* Motor coordination
* Complex motor impairments (more along the lines of traits similar to catatonia, Tourette, Parkinson, apraxia)
* Sensory hyper and hypo sensitivities (which are what most people consider "sensory issues" but are just one tiny part of the many possible ones)
* Misophonia (also commonly thought of with "sensory issues")
* Actual sensory acuity (also commonly thought of with "sensory issues")
* Sensory scrambling, distortion (less commonly thought of with "sensory issues")
* Difficulties interpreting sensory information (identifying/categorizing objects, etc., agnosia-like effects) (rarely thought of with "sensory issues" but present in a lot of us with more severe ones)
* Being drawn towards certain forms of sensory input (shiny, spinning, leathery, smooth and cool, etc.)
* Need for sameness
* Routines
* Emotional intensity
* Emotional complexity
* Alexithymia
* Tendency to understand the world in terms of sensory information and the patterns between them, rather than anything abstract (what Donna Williams calls "sensing")
* Tendency to understand things in terms of idea, category, etc. (what Donna Williams calls "interpreting")
* Triggered versus voluntary movement/thought/action/memory/etc.
* Self-care skills (ADLs, IADLs)
* Interest in social interaction
* Outward responsiveness to other people by normal standards (possibly Wing-like categories of aloof/passive/active but odd/formal/etc.)
* Ability to read nonautistic people
* Ability to read autistic people (or autistic people of the same basic type)
* Ability to care about other people
* Rigid versus fluid/fluctuating skill patterns
* Ability to multitask
* Repetitive body movements
* Unusual body movements and mannerisms
* Unusual stillness or stiffness where movement would normally be expected
* Ability to perform assorted physical feats like balancing on rooftops, etc.
* Ability to perform assorted intellectual feats like always knowing the time it is, or complex arithmetic in head

And I could go on, and on, and on. All of that was just what I could think of easily without stretching, at least at the particular moment that all that information is triggered (I rely heavily on triggers for information and memory, otherwise I don't remember it at all).

Now a person could choose from that which one or two things they think are most important, but it still wouldn't come even close to describing a person's overall functioning. And that's not to mention those of us whose functioning, as described above, involves a whole lot of fluid and fluctuating skills rather than one rigid set of skills that is always the same. For instance, how would you deal with a person whose level of sensory issues (whichever ones you consider important), and speech abilities, were constantly shifting around with no control possible on their part? They could zip back and forth from low to high functioning several times within a day. And it would be wrong to say that because they could do something sometimes, then it's just "high functioning", because then it doesn't describe how they are the rest of the time. And you can't just call them "low functioning", for the same reasons. They break the categories.

LFA/HFA are just as breakable if not more breakable than AS/autism. (In fact I know a researcher who insists that there is a demonstrable difference between AS and autism in the way they test, but that there is no tendency for autism to split up into LFA and HFA when it comes to the same sort of test score patterns. There's an AS pattern of skills and an autistic pattern of skills but no "HFA" or "LFA" pattern of skills. According to her. I disagree with some of what she says, but it's a valid view and based in far more evidence than most people use.)

(Okay... I just spent at least ten minutes with no thoughts in my mind and my body stuck in one position. That was interesting. Trying again.)

So anyway... your choosing of speech and sensory issues (which sensory issues you mean is unclear) says that those are important to your idea of autism. (Under your classifications I'm currently low functioning, just so you know.) But, say, what if to my view of autism, what's important isn't speech and "sensory issues", but rather rigid vs. fluctuating abilities, and "sensing" vs. "interpreting". So suddenly people who are your low functioning could be my high functioning, and people who are your high functioning could be my low functioning. Get a third person's opinion in the mix and you see the problem. And then it's "Whose opinion matters the most?" and that can get ugly.

Which is why (well, one among a huge number of other reasons that would take forever to explain) I pretty much just say "Functioning levels don't make sense" and leave it at that. Plus, generally any functioning level that people can devise, will split me in two or more pieces. (One part HFA, one part LFA, for instance.) Since I am one person, not two or more people, and do not appreciate the sensation of having someone's categories rip me into pieces, I don't do functioning levels. Seriously, massive can of worms ;)


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25 Feb 2011, 2:41 am

Oh also since people often ask me, I do in fact believe there are different types of autistic people. (My particular type seems rare among online autistic people but not so rare I haven't found others.) I just don't think that the usual category labels (AS/HFA/LFA/PDDNOS/etc.) work in order to describe them accurately at all. Unfortunately, these sorts of things don't lend themselves to easy lists of criteria.

And also, as far as how I approach describing people if I don't use functioning levels... I just describe exactly what I mean. If I mean people with no speech, I say that. But in doing that, I also have to be clear that i'm not accidentally pulling together all kinds of traits that don't necessarily go with lack of speech. Like if I say "Someone who can't talk," but mean "Someone who can't talk, can't understand words, can't care for themselves, etc." then that's wrong. It's also wrong to say "Someone who can't talk or understand words" if I'm referring to someone where I have no proof at all that they can't understand words. (And it takes some pretty serious stuff to convince me someone can't understand words. It's simply not possible to know that simply by a lack of typical forms of responsiveness for instance.) And you also have to watch out for made-up categories that are more rhetorical devices than real people ("people who can't contribute anything to society" is one that gets thrown around depressingly often). But it still seems to work better than any of the other categories overall, because it's more accurate and tells people exactly what you do and don't mean.


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25 Feb 2011, 2:47 am

I have what I consider HFA. Or aspergers. My docter said they were the same thing. I had a speech impediment. I talked through my nose if that counts. I have trouble writing and communicating ideas. I can repeat ideas quite well. If I have an idea which has been had before then I have no trouble communicating that Idea.



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25 Feb 2011, 6:14 am

anbuend wrote:
I'm diagnosed with autism. No "high functioning" added, thank goodness (I loathe functioning labels, and think they promote inaccurate at best and dangerous at worst stereotyping).

I don't like the way some people here use the term aspie as if it includes all of us and don't consider myself aspie. I think autistic is a more inclusive term for the whole spectrum. I also don't think the difference between those labeled HFA and those labeled LFA is intelligence, I know people labeled LFA who could run rings around some people here intellectually.

Many thanks for your post. I'm learning more on this forum than I ever did from NT health professionals. Agree 100 percent with your observations.



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25 Feb 2011, 6:19 am

anbuend wrote:
I'm diagnosed with autism. No "high functioning" added, thank goodness (I loathe functioning labels, and think they promote inaccurate at best and dangerous at worst stereotyping).

I don't like the way some people here use the term aspie as if it includes all of us and don't consider myself aspie. I think autistic is a more inclusive term for the whole spectrum. I also don't think the difference between those labeled HFA and those labeled LFA is intelligence, I know people labeled LFA who could run rings around some people here intellectually.

Many thanks for your post. I'm learning more on this forum than I ever did from NT health professionals. Agree 100 percent with your observations.



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25 Feb 2011, 7:10 am

cyberdad wrote:
Ok so lets keep the autism spectrum but just have a spectrum gradient.
low functioning - (no speech substantial sensory issues)
Functioning - (speech but coupled with substantial sensory issues)
High functioning - (speech and subject has largely mitigated sensory issues)


If we should not label with pdd-nos, etc, as per your early post, how are these labels any different?

How do functioning levels address impairment? For example, two people could be functioning at the same level, but one with an IQ of 100 and the other an IQ of 150. Which is suffering the greater impairment?

Sensory issues are not required for autism. In fact they are not even mentioned in the DSM.

Presence of speech is not the same as effective communicative speech.


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25 Feb 2011, 11:01 am

Millstone wrote:
Personally I can't wait for "Asperger" to disappear from the lexicon only because of its unfortunate American pronunciation. I'm OK with autism spectrum disorder.


Same here! :thumright:


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