Death of the Syndrome

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An issue I have run into is that someone might describe experiences that may be superficially similar to what someone else described, but deeper discussion reveals the differences. btbnnyr and I tend not to be very emotional, but we do not process emotions in the same way. btbnnyr and I also think in pictures, but our thought processes are not identical - and mine are not exactly like Temple Grandin's either. I also know that both Tuttle and I are vulnerable to losing speech, but not necessarily for similar durations, and sometimes I can get a word or two out whereas she can't get any words at all out.

I don't mean to pick btbnnyr specifically, but those two examples were fairly recent.

Something else I have run into (and I have not seen btbnnyr do this) is that some people seem to arrive with the assumption that the way they experience autism is the way autism is experienced, and talk about not relating to particular experiences that other autistic people describe, and generalizing this to mean that the experience is not particularly autistic.

Another I have seen is people who refer to their childhood as having much more severely autistic presentation and using this to conclude that anyone who had a milder presentation should also have milder problems as adults, something else which is not necessarily accurate (and is addressed in Whirlingmind's post).

I think it is much less about "relating" and much more about describing own experiences.

What I mean is the two seem to get mixed up in discussion.

I recall a poster linking a video that said that "low functioning" autistic children stim because they don't know where they are, and presented this as the reason for stimming.

But that description appears to be based on one person's description (Tito Mukhopadhyay) of why he stims, but contradicts another's descriptions of why she stims (Carly Fleischmann). And while Tito's description matches (in a much more severe fashion than I experience) the reason for some of my stims, not all of my stims are for that purpose. And I suspect others have their own reasons, because there's a fairly large diversity of sensory issues among autistic people in terms of severity, hypersensitivity, hyposensitivity, and how people deal with them. It strikes me as virtually impossible to make accurate sweeping claims about specifics as sometimes happens here.

I used to buy into some of the stuff in the autism community, but not anymore. So things like presume competence and rejection of functioning labels, I don't buy these anymore. I don't mean that I presume incompetence, considering that I worked at non-profit specifically to educate lower functioning, more severely autistic kids with language and cognitive problems. I mean that I had enough of the memes and the relating and the emotional/political stuff that seems to make up most messages in the autism community, on blogs, in organizations, wherever. I found autism community no different from NT social groups that I am not interested in. I haven't yet found people who are more interested in doing practical things than talking about their emotions, and I have even thought about starting a practical things doing organization some day, but I haven't got time right now due to my autism/neuroscience research work.

Yes, so no one can really get it "wrong", especially if they are just sharing their experiences.
Concerning stimming; what is it with people that think it is a low-functioning thing? There is a really discriminatory undertone to a lot of threads where stimming gets mentioned.
Like here, some have over and over brought up that they might be placed in the same category as people that stim or rock!! ! with the new diagnosis! They should know that they're already in one, and seem to have overlooked that part.

Yeah, I don't know. It's weird sometimes how people get overly involved in others' experiences.

btbnnyr,

What is wrong with talking about emotions? You have yourself posted at least two threads recently asking people about their emotional experiences or lack thereof.

I didn't say there was something wrong with talking about emotions, but that is bulk of what I am finding autism community, and I want the bulk to be doing practical things, doing instead of talking.

Ah, I took it to be criticism.

I think for many here, the talking part is a practical thing. However, I do think it is possible to reach a point where talking doesn't do much, as one can only process the same thing so many times.

So, no argument there. Thank you for the clarification.

Yeah, I think I got to the less talking, more doing place a long time ago, so not into autism organizations run by autistic people mostly talking, and some of the talking being nonsense to me.

In my opinion a lot of the talking on this forum is self-centered and very childish, but talking can be a form of doing, as if you are inquiring very deeply and factoring in new material comprehensively, it can change the way your brain works and even transform your entire mind, whereas 'doing' can be a form of repetition or a way to escape. I have done many very wonderful and interesting things all my life, art. music, poetry, business (amazing to me that I even have one), social science projects, and though very creative, I was an addict in regard to all of this---and this does not mean the art or music or whatever was not beautiful, but It did not help alleviate my own personal disorder or do anything to affect the disorder in this world. In fact it created even more disorder, which is always how it goes when a person does not face reality and uses just about anything including so called 'relationships' to shove sh*t under the rug...

The main point is do not underestimate the value of active thinking and communication, as it can be profoundly life changing and even world changing, and also, this forum is what people make it, and if communicating becomes more focused and generative here, then others who apparently have left in frustration, some of whom are kind of what could be called the creme of the crop (though each human being is precious) might come back---. the opera is not over until the fat lady sings:-)

The one real problem I see with this change is that many NTs do not do a good job of discriminating between things like High and Low function - They hear Autism and they think Rainman! This can be a real problem for those on the lightly touched end of the scale and will remain so into the next couple of years. Then because we out number the low functioning Auts we will become the face of Autism as we will be the ones most often seen. Then it will be low functioning autistic that will be hurt - when "everyone" (read NTs) knows the odd guy down the street or nerdy kid at school - why waste money on them - they can get by OK.

This is a very NT way of doing things -- Lump together somewhat similar things then get very confused about what exactly you are talking about. This can be seen in the word "love" == I love my car, I love Pizza, I love my son, I love my wife. This is why I like many other Asperger's have problems with the word love and other emotion words - how can one talk about concepts when the words involved are so d##b slippery and slimy. Now we see the same thing happening to the Word Autism. NTs will have no problem - ostracizing me because they just know that I am "rainman" and who wants to have to deal with that - and others will decide not to permit assistance to some LFA because they are sure that Autism is just some slightly goofy people, why the fuss? This smearing together of word meanings may well be the source of the angst in the ASD community - we detest sloppy word usage we like nice neat well laid out structures in our lives - ad to this our dislike of change and you can expect many of our group to be unhappy about this change.


Now for the really good part of this move by the DSM-5 to remove the term Asperger's. It means that we can now - use the term as we see fit -- there is no longer a formal diagnosis of Asperger's Syndrome or Asperger's Disability -- the medical profession has officially abandoned the term so it is now ours to use as we see fit!! !! I say we start be ditching the words - syndrome and disability. How about Asperger's personality or type? We can ditch the need for a "professional diagnosis of Asperger's Syndrome or Disability" before being Asperger's or Aspie or Asper. Because we do not require (cannot get) an official diagnosis -- we do not need to see a diagnosis before declaring that someone appears to be Asperger's or Aspie for show Asper traits. Therefore, Tomas Jefferson can be said to have shown Asperger's traits that he appeared Asper. It will now be correct to discuss weather or not He showed sufficient traits in the historical record - to be considered an Asperger's or not. This is just the beginning.

Suggested definitions ----
Asperger's Personality -- Showing sufficient number of Asperger's traits to a level to be considered An Asperger's. Formally someone with Asperger's Syndrome.

Aspie -- Someone with Asperger's Personality - friendly or familiar term. (She is an Aspie.) or (They are an Aspie group.)
Asper -- Showing the traits of Asperger's Personality. (He acted Asper.) or (That was Asper of me.) or (They are an Asper group)

Again just a starting point.

Er, Raymond Babbitt would be considered "high functioning."

Well, I think that "Rainman" character was created with the intention of portraying HF autism.



I am not much sure if HFA+AS outnumber LFA.

At least according to this study, the famous study of "1 in 88 kids have autism", the majority of children diagnosed with ASD have IQ < 85.