Any High Functioning Autistic people here?

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cyberdad
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24 Feb 2011, 7:00 am

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)



ediself
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24 Feb 2011, 7:16 am

I don't know that people on this board are of the opinion you claim they are...I for one am not! I don't associate asperger's with genius, and i'm pretty sure high functionning autistic people have a normal to high IQ, since you need enough "IQ room" to dedicate a big part of it to functionning in an NT world. If my IQ was lower, the only difference would be, for me, that i would have to make a choice between functionning in this world, and my special interests.If my IQ was even lower than that, i think my choice would have been between functionning and keeping my sanity. I don't blame people who can't function in an NT world, so i don't judge low functionning autistics as "less competent". Sometimes i also need to take a break from NTs and question the value of making the choice to be social to the detriment of learning , about anything .
I lost myself in my answer actually, because i don't really know what the difference is between high functionning autism and asperger's. From what i gather on this board, they are lower on the spectrum, which makes them more prone to physical hypersensitivities and overload, so i would say, based on that, that their IQ might be even higher than that of an aspie, if they can function at the same level while having stronger symptoms. Or maybe they're braver and stronger. I have trouble coping with the symptoms I have as it is....



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24 Feb 2011, 7:19 am

In adults, I see no difference between the two. Apparently, given the pending changes in the DSM, neither does the field of psychiatry.


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24 Feb 2011, 7:25 am

There is a lot of confusion regarding the spectrum when it relates to AS and HFA. It all seems to come down to the speech delay. But what exactly is the speech delay? Is it a failure to begin uttering words? Is it the failure to make sentences at the appropriate time? Or is it a failure to speak correctly (therefore requiring speech therapy)? These are some areas where there is confusion about the speech delay. When I was professionally diagnosed, I was told that I could undergo further testing to see if I was HFA rather than AS---but since I was an adult I may wish to just leave the diagnosis as AS. But I spoke on time as a child. But I had trouble with the pronunciation or certain sounds that the other kids were apparently getting. I had tape recordings of my speech as a child---so that was of interest when I was diagnosed. I chose to not undergo further testing and maintain the diagnosis of AS. And, I was told that it was of the opinion of many professionals that AS was actually a form of HFA anyway.

I seriously feel the speech delay is meant to imply not beginning speaking until later than average kids do. But there are some professionals who believe the definition lies in the correct manner of speaking. When the new DSM-V comes out, the term AS will most likely be eliminated from the manuals---but I am sure we will still use the term AS well into the future.

As for your experience with the speaker---I think that is unfair. I believe the HFAs should have benefitted from that as well. It sounds like discrimination to me.


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cyberdad
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24 Feb 2011, 7:38 am

wavefreak58 wrote:
In adults, I see no difference between the two. Apparently, given the pending changes in the DSM, neither does the field of psychiatry.


So why the distinction? I'm actually not taking this out on forum users as people are free to use whatever label they wish. Its more the nuerotype health professionals I've been dealing with that have been irritating me.

Our paediatrician (an NT) cheerfully explained that with intervention our very bright ASD daughter could be rediagnosed as an Aspergers. I think what he meant to say was our child could move up higher on the spectrum, but of course nuerotypes need categories labels and pigeon holes and league tables to measure the people, institutions, countries around them. I told him I'm happy she's already a HFA and if autism is life long (another little mantra the health professionals like to bleat) then whats the difference if she is HFA for the rest of her life?



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24 Feb 2011, 7:52 am

glider18 wrote:
There is a lot of confusion regarding the spectrum when it relates to AS and HFA. It all seems to come down to the speech delay. But what exactly is the speech delay? Is it a failure to begin uttering words? Is it the failure to make sentences at the appropriate time? Or is it a failure to speak correctly (therefore requiring speech therapy)? These are some areas where there is confusion about the speech delay. When I was professionally diagnosed, I was told that I could undergo further testing to see if I was HFA rather than AS---but since I was an adult I may wish to just leave the diagnosis as AS. But I spoke on time as a child. But I had trouble with the pronunciation or certain sounds that the other kids were apparently getting. I had tape recordings of my speech as a child---so that was of interest when I was diagnosed. I chose to not undergo further testing and maintain the diagnosis of AS. And, I was told that it was of the opinion of many professionals that AS was actually a form of HFA anyway.

I seriously feel the speech delay is meant to imply not beginning speaking until later than average kids do. But there are some professionals who believe the definition lies in the correct manner of speaking. When the new DSM-V comes out, the term AS will most likely be eliminated from the manuals---but I am sure we will still use the term AS well into the future.

As for your experience with the speaker---I think that is unfair. I believe the HFAs should have benefitted from that as well. It sounds like discrimination to me.


Three of the reasons for the elimination of Aspergers from DMS V probably comes from research published by Tony Attwood.
1. No difference in IQ between adults with HFA and Aspergers
2. No difference in social skills between adults with HFA and Aspergers
3, speech delay can no longer be used to distinguish Aspergers as many are diagnosed later in life with Aspergers after prolonged speech dealys,

A work colleague of mine has a 13 yr old HFA son who is trying to publish a book on this subject. In his own precocious way he's expressed his bitterness at being labelled retarded at 7yrs of age only to start speaking at 8 and by 12 being classifed as a gifted child with a MENSA score on his IQ test. I can tell you he is a very angry young teenager.

In my own case I'm happy for my HFA daughter to blossom to her full potential but want to avoid labelling her as much as possible.



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24 Feb 2011, 7:56 am

It makes sense to me that the matter of that ticket price was simply about a society serving its own membership in relation to affordability, and I can easily imagine they might have done the same no matter what might have been their speaker's subject. So while a "spectrum disparity" does seem to appear there, I would still suggest their lower price for members is defensible.

Personally, I see nothing prestigious about either label -- AS or HFA -- and I tend to think as someone else has essentially said: As an adult, the matter is irrelevant. Overall, and for a variety of reasons, I present myself as having AS/HFA.


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Last edited by leejosepho on 24 Feb 2011, 7:58 am, edited 1 time in total.

cyberdad
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24 Feb 2011, 7:56 am

glider18 wrote:
As for your experience with the speaker---I think that is unfair. I believe the HFAs should have benefitted from that as well. It sounds like discrimination to me.


Not discrimination, I think tunnel vision.



cyberdad
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24 Feb 2011, 8:01 am

leejosepho wrote:
Personally, I see nothing prestigious about either label -- AS or HFA -- and I tend to think as someone else has essentially said: As an adult, the matter is irrelevant.


Perhaps, and yet the labels stick, the societies will persist and people diagnosed will say "I'm proud to be an Aspie because Einstein, Mozart and Turing were all Aspies". I'm a nuerotypical and I can see this from a mile away, I can tell you I know HFA teenagers who find this labelling somewhere in the region of fluff to bull$#&*



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24 Feb 2011, 8:39 am

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 ...

... and yes, people of all varieties might see any or all of that as nothing but the fluff and bull you have mentioned. Yet in each and every case and even to the far ends of that spectrum -- prestige either way, and whether one is proud or seemingly humble (false pride) -- human arrogance or pride is the issue. In other words, and without any implication intended:

I am personally pleased when occasionally found to be "in good AS/HFA company", and it truly hurts when someone either scoffs or mocks my merely circumstantial status, however perceived.


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24 Feb 2011, 8:48 am

But wait, why does the speech delay automatically assume someone is HFA or AS? The DSM does NOT require the speech delay to be considered Autistic. There are 4 things listed under 'impairments in communication', and speech delay is only one out of 4. Only one is required for the criteria to be met.

Diagnostic criteria for 299.00 Autistic Disorder
A. A total of six (or more) items from (1). (2). and (3). with at least two from (1). and one
each from (2) and (3):

(1) qualitative impairment in social interaction, as manifested by at least two of the
following:
(a) marked impairment in the use of multiple nonverbal behaviors such as eyeto-
eye gaze, facial expression, body postures, and gestures to regulate socia
l interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) a lack of spontaneous seeking to share enjoyment, interesu, or achievements
with other people (e.g., by a lack of showing, bringing. or pointing
out objects of interest)
(d) lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the
following:
(a) delay in, or total lack of, the development of spoken language (not accompanied
by an attempt to compensate through alternative modes of communication
such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability to
initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate
to developmental level
(3) restricted repetit ive and stereotyped patterns of behavior. interests, and activiti
es, as manifested by at least one of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted
patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or ritu,
I,
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping
or twisting, or complex whole-body movements)
(d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset
prior to age 3 years: (I) social interaction, (2) language as used in social communication,
or (3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative
Disorder.

That means that instead of the speech delay, one could have adequate speech but be unable to sustain or initiate conversation with others. Or they could have no speech delay, and one of these other ones instead:
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate
to developmental level

----
So where is the cut off truly made, if speech delay is not a necessary criteria? The DSM's only real differentiation is this:
. In Autistic Disorder, typical social interaction patterns are marked by self-isolation or markedly rigid social approaches,
whereas in Asperger's Disorder there may appear to be motivation for approaching
others even though this is then done in a highly eccentric, one-sided, verbose, and insensitive
manner.

For comparison's sake, Aspergers in the DSM is:

Diagnostic criteria for 299.80 Asperger's Disorder
A. Qualitative impairment in social interaction, as manifested by at least two of the fol·
lowing:
(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to eye
gaze, facial expression, body postures, and gestures to regulate social inter·
action
(2) failure to develop peer relationships appropriate to developmental level
(3) a lack of spontaneous seeking to share enjoyment, interests, or achievement
with other people (e.g., by a lack of showing, bringing, or pointing out object
of interest to other people)
(4) lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities,
as manifested by at least one of the following:
(1) encompassing preoccupation with one or more stereotyped and restricted pal·
terns of interest that is abnormal either in intensity or focus
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or
twisting, or complex whole-body movements)
(4) persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or
other important areas of functioning .
D. There is no clinically significant general delay in language (e.g ., single words used by
age 2 years, communicative phrases used by age 3 yea rs).
E. There is no clinically significant delay in cognitive development or in the development
of age-appropriate self-help skills, adaptive behavior (other than in social interaction),
and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.


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wavefreak58
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24 Feb 2011, 9:06 am

cyberdad wrote:
wavefreak58 wrote:
In adults, I see no difference between the two. Apparently, given the pending changes in the DSM, neither does the field of psychiatry.


So why the distinction? I'm actually not taking this out on forum users as people are free to use whatever label they wish. Its more the nuerotype health professionals I've been dealing with that have been irritating me.

Our paediatrician (an NT) cheerfully explained that with intervention our very bright ASD daughter could be rediagnosed as an Aspergers. I think what he meant to say was our child could move up higher on the spectrum, but of course nuerotypes need categories labels and pigeon holes and league tables to measure the people, institutions, countries around them. I told him I'm happy she's already a HFA and if autism is life long (another little mantra the health professionals like to bleat) then whats the difference if she is HFA for the rest of her life?


The distinction seems to me to be an artifact of the way understanding of autism has evolved. My experience, albeit limited (recently diagnosed), is that there is a great deal of variability among professionals in definitions, perceptions of function levels, therapies and interventions. It's quite a mess. Add to that limited funding, turf wars over resources and arguments over appropriate research goals and it's a wonder that understanding progresses at all.


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anbuend
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24 Feb 2011, 9:37 am

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.


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24 Feb 2011, 9:48 am

Silachan wrote:
]But wait, why does the speech delay automatically assume someone is HFA or AS?

I suspect that is just an easy "quick grab" rather than having to sort this:

Quote:
The DSM's only real differentiation is this:
In Autistic Disorder, typical social interaction patterns are marked by self-isolation or markedly rigid social approaches, whereas in Asperger's Disorder there may appear to be motivation for approaching others even though this is then done in a highly eccentric, one-sided, verbose, and insensitive manner.

=================

anbuend wrote:
(I loathe functioning labels, and think they promote inaccurate at best and dangerous at worst stereotyping).

Yes. I am presently trying to help even some "pros" comprehend how/why an AS/HFA has so much difficulty functioning!


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ChrisVulcan
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24 Feb 2011, 10:36 am

The way I see it, the autism spectrum does not exist.

Let me explain. The phenomenon we call autism is very real. Its effect on our lives is tremendous. But what it seems the psychiatric community has done is to identify a group of symptoms or behaviors, give it a name, and then claim that it is a distinct disorder.

But think about it. Autism has no provable cause (except in certain circumstances), no universally true mechanism, and can involve any number of symptoms which may or may not correspond with another autistic person's symptoms.

I think that the "diagnoses" that we have right now in the DSM and ICD are really just categorizations for things that we have only a shallow understanding of. There is no "correct" distinction between Asperger's syndrome and High Functioning Autism, because neither of them exists as a distinct disorder.


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