Aspergers still exists
ASPartOfMe
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I was at a support group meeting run by Dr, Lynda Geller and specialist with 30 years experience. Her assistant a student working on her Phd also helped facilitate the meeting. The topic of the DSM 5 dropping of Aspergers as an official diagnoses was brought up. Dr Geller said she had participated in numerous meetings where this decision was made and the issue driving this was insurance. Dr. Geller's assistant said that National Institutes of Mental Health Research Domain Criteria not the DSM is the main criteria used for Doctorate level research at Teachers College, Columbia University. http://www.nimh.nih.gov/research-priori ... rdoc.shtml
The view of the NIMH is that DSM 5 and RDoC complementary efforts will move research forward over the long term and that DSM IV and IDC 10 represent current consensus for diagnoses and treatment. http://www.nimh.nih.gov/news/science-ne ... ests.shtml
Dr. Geller's professional opinion is that the DSM 5 worsened an already bad DSM IV. The Autism spectrum needs to be broken down into more categories not less..
So while Aspergers and the DSM IV is still professionally and academically around identity can only be decided by the individuals and the community at large. Aspie is a unique phenomenon. As has been noted usually people usually resist being diagnosed as having a ‘mental disorder ” never mind the finding joy, relief and creating a sense of community around it. This raises two questions should the identity continue and will it.
The while idea is subsuming is strange. New York is part of America yet many ways is different from America. They don’t drive much, they are super progressive politically, they walk and talk differently and look down on the rest of America and are resented in the rest America for this. Yet New York s in other ways is America on steroids, extraverted, cocky, capitalistic. Yet there is no serious effort to make New Yorkers officially subsume their New York identify to American.
There are good scientific arguments for subsuming Aspergers and the DSM V. Recognition of women and sensory issues, little difference between HFA and AS Creating a new disorder Sensory Communication disorder for the trendy layperson “nerdy” social problems view of Aspergers.
Another argument is thatt Aspergers has become “trendy” and supposedly over diagnosed so lets kill the whole thing therefore causing an identity issue people legitimately on the spectrum. Unfortunately this approach is not very different from how America tries to solve other problems such as terrorism. It does not make it any less galling.
There other arguments that are ableist. The main one is letting an NT organization decide for us. Another argument for getting is the word aspergers has become devalued by the NT world. This can range from ASS-BURGERS focusing on the savant portion of the spectrum to associating people in the spectrum with criminal hackers and Adam Lanza. This is internalizing ableism and stereotyping there is no other way of putting this.
Another argument is that the word aspergers has become a code word for ableism by the less affected members of the community towered the greater affected. This was brought to the forefront in 2010 by the hateful words of Michael John Carley the former executive director of GRASP "I personally am probably going to have a very hard time calling myself autistic," “somebody who might have to wear adult diapers and maybe a head-restraining device. This is very hard for us to swallow," http://www.npr.org/templates/story/stor ... =123527833 . While I believe Carleys views represent small minority of GRASP members and the community this ableism and denial of Autism does exist in movements such as Aspie superoirity and Aspie next stage o fhuman evolution belief.s
I have an idea that I hope can solve a lot of these problems. The DSM 5 has 3 levels based on severity of effects named Level 1 , Level 2 , Level 3. We are only numbers to them. How about changing Level 1 to Aspregers Autism, Level 2 to Barran-Cohen Autism, Level 3 to Kanner Autism. Change Disorder to Condition while we are at it. These names fully recognize that aspergers is a part of the autism spectrum. “Aspies” get their identifiers recognized by the “bible”. Besides “Aspie-Autistic” sounds cool.
Despite all of the above and support among the professionals I am not optimistic about the long term future of the identifiers Aspergers and Aspie. While it was fought bitterly when it was proposed now that it has passed I get a sense of resignation. I was at a GRASP meeting where topics for next years monthly agenda was being voted on. I proposed now that the DSM 5 has passed what are the actual effects. I was told why bother since it won’t be changed for another 16 years. um maybe we will mention it if we have a diagnoses discussion. Unlike the other proposals this one did not even come up for a vote. Not all that different here. Money will co-opt the pros. In 10 years it will just a few die hards using it.
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
Last edited by ASPartOfMe on 24 Nov 2013, 7:40 pm, edited 1 time in total.
Despite all of the above and support among the professionals I am not optimistic about the long term future of the identifiers Aspergers and Aspie.
What is so important about a label ?
I don't see why the label of "Autistic Spectrum Disorder" is better or worse than the label of "Asperger Disorder" ???
This is very intriguing to me. Normally when you receive a diagnosis of any kind, it is devastating, it is sad and life-changing in a bad way. This seems to be the complete opposite with Asperger's. There is some level of relief, excitement, and a building of a community as you say. It's painfully ironic that this unique condition that people like to identify with, is the one that has been eliminated in the new DSM.
I am not certain of the practical ramifications of this decision. My own therapist continues to call me an Aspie with no thought given to the new DSM. I will continue to identify with that community. In time will the term "die out"? Maybe, or maybe not. Some concepts and words stick around long after the establishment has legislated or mandated them out of existence. But language changes all of the time, and in the end it is just a label. Aspies will continue to exist regardless of what others want to call us, or even what we call ourselves.
Despite all of the above and support among the professionals I am not optimistic about the long term future of the identifiers Aspergers and Aspie.
What is so important about a label ?
I don't see why the label of "Autistic Spectrum Disorder" is better or worse than the label of "Asperger Disorder" ???
Aspergers is the only label that accurately describes what we are going through. Without the right label, it is more difficult to start addressing an individual's needs appropriately.
Or if you prefer not to have a label, it is a description of a set of circumstances of tendencies.
It's just like PDD(nos) which one of my sons has. Simply saying "autism" or "autism spectrum" does not help illustrate the traits he has, or the needs he has. You can't treat someone with PDD(nos) like they have Aspergers or someone with Aspergers like they have PDD(nos).
Asperger = label that describes the autistic traits of a person
DSM 5 ASD = label wherein each trait is identified and severity ranking identified = label that describes the autistic traits of a person
I would argue that "Asperger Disorder" poorly identifies traits, because there is such a range of AS people. Now the DSM 5 will tighten up the diagnosis and identify each trait and assign a severity to it, and figure out where you fit on the spectrum and what kind of medical help you need.
You are implying that the DSM 5 ASD label will not identify some traits of the now labeled Asperger person, how so ?
The tendency of the medical community is to go to one extreme to another. They want to either deal with perfectly normal kids that the parents want practically sedated or the profoundly impaired. This concerns me more for future kids who need help like my son than me as a current aspie. In seeking a diagnosis for my smart, active, funny, but definitely aspie child, is the fact that I want more than to have him stoned and quiet and the fact that he talks and has a desire for social contact going to keep us from finding the proper way to help him? As an aspie myself, I am not looking to "fix" him, the way my mom was me because I don't think he is broken. I just want to find a way to help him so that life won't be as rough for him as it was me.
Perhaps it is just an aspie trait to be distrustful of the medical profession (not counting front-line medicine... I'm a paramedic) but It seems that eliminating a separate distinction for people like me and my son they have tightened the criteria rather than expanded it. That worries me a lot. I don't know if I will be able to get help for my son or not.
When the DSM-V came out, I queried my therapist whether I should be concerned about having to be rediagnosed. This was the reply:
So I wouldn't get too bent out of shape one way or another about the DSM-V changes. The arguments over it are far from settled. And if this article is any indication, they will be forced to changed it back, because it may turn out that AS and Autism are not precisely the same condition after all:
>Asperger & Autism: Brain Differences<
aaronzx
Yellow-bellied Woodpecker

Joined: 21 Nov 2013
Age: 33
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Location: Australia
I find this all so confusing. However, I prefer to identify with being HFA than either ASD or AS.
I was diagnosed with AS, yet I didn't speak until I was 3 so technically I should be in the HFA category under the DSM-4. Yet I meet people with both AS and HFA and I can't tell the difference between them. The people being diagnosed with ASD today are also very similar.
So I feel that the new diagnosis of ASD is removing a distinction between people with HFA and AS who were once considered different, yet really aren't so different in their neurological make-up.
mouthyb
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I'm also really unhappy with the disappearance of Asperger's syndrome, because it is distinct from other categories. I don't have the language delays (in fact, I was hyperlexic), but I have a double helping of the social problems and sensory problems, in addition to a few repetitive behaviors.
I also have a son whose profile is very, very like mine, except for some expressive language delays (he has a tendency to make up his own language, reassign meaning to words and/or make up his own word combinations)--which, in my understanding, puts him closer to HFA than Asperger's. These changes are echoed in new policies (circa this year, last month) in our school system which make it much, MUCH harder to get an AS diagnosis. In fact, despite him melting down daily and needed to hold weighted objects during transition, language delays, inability to understand interpersonal boundaries, over friendliness/over social behaviors, inability to tolerate a non-rigid school schedule, and consistent problems understanding social behaviors, the diagnosis team for my school district actually rejected an AS diagnosis the first time they saw him, earlier this year.
I'm having him retested, but I think they'll reject him again because they seem to want for him to be so impaired he can't be taught at all, even though his needs in the classroom are so extreme that they've had to assign him someone to sit with him and prompt him to behave in classroom specific ways, because no matter how often he gets in trouble for it, he cannot remember to behave in the ways they want him to.
And all this despite an obviously high IQ (he dismantles complex things like a champ, and he's very, very good with computers already, at 6. He is also surprisingly observant of people, even though he has trouble acting on his observations.)
Long story short, I'm pretty annoyed that the reflex reaction of the medical community, once they start finding out that there are more of us than was previously thought, has been to try to exclude as many people as possible. He needs help, as do I, and trying to exclude either of us is pretty sh***y.
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ASPartOfMe
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I was diagnosed with AS, yet I didn't speak until I was 3 so technically I should be in the HFA category under the DSM-4. Yet I meet people with both AS and HFA and I can't tell the difference between them. The people being diagnosed with ASD today are also very similar.
So I feel that the new diagnosis of ASD is removing a distinction between people with HFA and AS who were once considered different, yet really aren't so different in their neurological make-up.
It is complicated.
I agree that there is little difference between HFA and Aspergers. My lack of light sensitivity compared to others on the spectrum is much more relevant to my functionality then how fast I learned words over 5 decades ago. Under my proposal the old HFA would be folded under the Aspergers-Autism diagnoses.
Why Aspergers was received so differently I do not know. When I first sought out a diagnoses I expected maybe an explanation and access to services. A strong feeling of "aspie" identity was the furthest thing from my mind and shocked me when it happened. But it did happen for me and many others. I have seen several reports from clinicians and where people are in tears about the DSM 5 and asking there clinician does that mean I do not exist? . Disagreeing with aspergers diagnoses is one thing but there seems to be a lot of Schadenfreude within the community about aspergers “not existing”. Why? Don’t we get enough neuromajority people trying to invalidate us? .
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
aaronzx
Yellow-bellied Woodpecker

Joined: 21 Nov 2013
Age: 33
Gender: Male
Posts: 66
Location: Australia
I agree that there is little difference between HFA and Aspergers. My lack of light sensitivity compared to others on the spectrum is much more relevant to my functionality then how fast I learned words over 5 decades ago. Under my proposal the old HFA would be folded under the Aspergers-Autism diagnoses.
Why Aspergers was received so differently I do not know. When I first sought out a diagnoses I expected maybe an explanation and access to services. A strong feeling of "aspie" identity was the furthest thing from my mind and shocked me when it happened. But it did happen for me and many others. I have seen several reports from clinicians and where people are in tears about the DSM 5 and asking there clinician does that mean I do not exist? . Disagreeing with aspergers diagnoses is one thing but there seems to be a lot of Schadenfreude within the community about aspergers “not existing”. Why? Don’t we get enough neuromajority people trying to invalidate us? .
I didn't think about it from that perspective. I guess things are different for me because I only accepted my diagnosis this year and as a result I never self identified with being an aspie. As such, it doesn't bother me to start identifying with ASD.
I will have to read more about this.
ASPartOfMe
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I didn't think about it from that perspective. I guess things are different for me because I only accepted my diagnosis this year and as a result I never self identified with being an aspie. As such, it doesn't bother me to start identifying with ASD.
I will have to read more about this.
Skip the first 15 seconds expecially. if you have sensory issues
[youtube]http://www.youtube.com/watch?v=gkBxC_mNvG8[/youtube]
If you read above you know I do not agree with the aspie superiority and separatism views expressed by Dr. Gaskill. Strongly agree with most else he had to say.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
I haven't read the DSM, but I agree that such terms should be removed from the clinical diagnosis. Possibly not for the same reasons though. In fact, I would like to see the whole ASD banner condition removed and any clinically defined condition be restricted to the specific difficulties that those under the spectrum may have.
While I understand that for many the significance of the diagnosis is as an identity, having ones identity defined as a medical condition is dangerous. The broad umbrella condition of ASD in itself doesn't really define a medical condition. It is more a term that states that a person is of a different perceptive persuasion, and has a tendency to a specific array of difficulties that each may or may not suffer from, and to varying degrees.
This is an ugly duckling affair. Spending ones whole life being invalidated by how others affect them, then finding out that they are not invalid, but just different. While we may accept the diagnosis as a certificate of validity, understand that a medical diagnosis is specifically invalidating. By this means of definition, one who is diagnosed is broken. It is a medical condition. Everything you have ever seen, everything you have ever known, everything you have ever thought never happened. It was just your broken brain. While many of us stand proud with a recognition of what we are, as it is defined, many others see this as being proud of being sick. That their observation is more that we are proud of being a monster, and being defined as a medical condition, their view becomes formally valid. It merely justifies their innate bias.
Medicine has a specific relevance. The medical profession does not have an engineer's specifications sheet from God. A list of measurements and tolerances to compare against people in order to decide whether that person is a valid life form or not. They can only define a condition if it can be reasonably demonstrated that it causes a reduction in quality of life or longevity. Again, this must be reasonable. It must be a negative influence and only incidentally, if ever a positive one. While it is generally accepted that the sociological functioning of the majority is “normal” and has a positive outcome, it is also responsible for just about every atrocity know to man. Millions upon millions have suffered and died due to this human function. If an attribute or function that would ever results as a negative influence was sufficient, then typical sociological functioning would definitely qualify. Much more so than the sociological functioning of those who are ASD. A medical definition that is established based on difference is a sociological effect, not science. Every living thing on this planet is an imperfect reproduction of it's predecessors. By such a criteria, all life is disordered and invalid.
The broad umbrella definition of ASD, and too with other so called disorders, does not qualify as a medical condition, but the specific difficulties that they may experience do. These labels are for administrative purposes, to group together a bunch of quasi-related conditions. If the administrative terminologies defined and imposed by the medical profession are, or have the potential of being, exploited inappropriately to denigrate a person's person or rights, then that is irresponsible of the medical profession. What I have observed is that to some degree this is happening. Not only by the ignorant mass, but by those in positions of authority and influence who possess a greater capacity to inflict harm. While rejecting difference is an innate sociological functioning and is not directed solely at the 'disordered', I have seen some evidence to suggest that the 'disordered' are becoming the new 'blacks'. Societies always have a dog to kick, you can't stop it. But let it be someone else, not us. The audacity to impose upon us as victims the very thing that we, and only we, do not do. Let them play amongst themselves. Having our whole person being so clearly defined as a medical condition only aids the ill intended in their ambitions.
I do not identify as ASD or AS. Asperger was an Austrian paediatrician's name, not mine. I identify as a 'Literal' because that is what I see as the fundamental difference. I perceive my reality more literally, while most perceive their reality more impressively. When I look at the wall I see the wall. When they look at the wall they see what they want to see. Obviously, I'm the one who is disordered, says they. Go figure. I've even heard terms such as “You're too sane.” I define me, not someone else. While medical terminology may have been the means by which we have become aware, that doesn't mean we have to keep it. I would see it as more liberating, positive and productive to identify under a cultural/political banner of our own expression, rather than a medical condition defined expressly by those who are not like us. A black man does not need to be formally diagnosed with dermal hyper-pigmentation to be recognised as a Negro. He is not a medical condition. He need only look in the mirror and realise himself. So may we.
ASPartOfMe
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While I understand that for many the significance of the diagnosis is as an identity, having ones identity defined as a medical condition is dangerous. The broad umbrella condition of ASD in itself doesn't really define a medical condition. It is more a term that states that a person is of a different perceptive persuasion, and has a tendency to a specific array of difficulties that each may or may not suffer from, and to varying degrees.
This is an ugly duckling affair. Spending ones whole life being invalidated by how others affect them, then finding out that they are not invalid, but just different. While we may accept the diagnosis as a certificate of validity, understand that a medical diagnosis is specifically invalidating. By this means of definition, one who is diagnosed is broken. It is a medical condition. Everything you have ever seen, everything you have ever known, everything you have ever thought never happened. It was just your broken brain. While many of us stand proud with a recognition of what we are, as it is defined, many others see this as being proud of being sick. That their observation is more that we are proud of being a monster, and being defined as a medical condition, their view becomes formally valid. It merely justifies their innate bias.
Medicine has a specific relevance. The medical profession does not have an engineer's specifications sheet from God. A list of measurements and tolerances to compare against people in order to decide whether that person is a valid life form or not. They can only define a condition if it can be reasonably demonstrated that it causes a reduction in quality of life or longevity. Again, this must be reasonable. It must be a negative influence and only incidentally, if ever a positive one. While it is generally accepted that the sociological functioning of the majority is “normal” and has a positive outcome, it is also responsible for just about every atrocity know to man. Millions upon millions have suffered and died due to this human function. If an attribute or function that would ever results as a negative influence was sufficient, then typical sociological functioning would definitely qualify. Much more so than the sociological functioning of those who are ASD. A medical definition that is established based on difference is a sociological effect, not science. Every living thing on this planet is an imperfect reproduction of it's predecessors. By such a criteria, all life is disordered and invalid.
The broad umbrella definition of ASD, and too with other so called disorders, does not qualify as a medical condition, but the specific difficulties that they may experience do. These labels are for administrative purposes, to group together a bunch of quasi-related conditions. If the administrative terminologies defined and imposed by the medical profession are, or have the potential of being, exploited inappropriately to denigrate a person's person or rights, then that is irresponsible of the medical profession. What I have observed is that to some degree this is happening. Not only by the ignorant mass, but by those in positions of authority and influence who possess a greater capacity to inflict harm. While rejecting difference is an innate sociological functioning and is not directed solely at the 'disordered', I have seen some evidence to suggest that the 'disordered' are becoming the new 'blacks'. Societies always have a dog to kick, you can't stop it. But let it be someone else, not us. The audacity to impose upon us as victims the very thing that we, and only we, do not do. Let them play amongst themselves. Having our whole person being so clearly defined as a medical condition only aids the ill intended in their ambitions.
I do not identify as ASD or AS. Asperger was an Austrian paediatrician's name, not mine. I identify as a 'Literal' because that is what I see as the fundamental difference. I perceive my reality more literally, while most perceive their reality more impressively. When I look at the wall I see the wall. When they look at the wall they see what they want to see. Obviously, I'm the one who is disordered, says they. Go figure. I've even heard terms such as “You're too sane.” I define me, not someone else. While medical terminology may have been the means by which we have become aware, that doesn't mean we have to keep it. I would see it as more liberating, positive and productive to identify under a cultural/political banner of our own expression, rather than a medical condition defined expressly by those who are not like us. A black man does not need to be formally diagnosed with dermal hyper-pigmentation to be recognised as a Negro. He is not a medical condition. He need only look in the mirror and realise himself. So may we.
Your argument is still ableist at heart. Because people will interpret our identity as pride in being sick so we should not do it. After the Holocaust some survivors continued to wear their Jewish star that had been used to mark them for an eventual trip to the concentration camp as a statement of survival and to reclaim it. In the same light people who have been told they are wrong and diseased their whole life took the label Aspergers and renamed it to aspie a name that has a fun feel to it. The beauty of it was pretty much a spontaneous, genuine phenomenon. Interesting that the Asperger diagnoses was officially taken away because it was perceived as getting too popular. So our reaction to this is to enable them? Seems that way.
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
This topic seems to rear it's head every week or so on this forum in some form.
Lets not kid ourselves, it;s driven by insecurity by those desperately not wanting to be grouped with people who act like Rainman. They try and search for empirical evidence of brain or motor differences between those diagnosed with Aspergers and those diagnosed with autism.
From what I've found; despite differences between autistic brains and those with Aspergers; they are still much closer in brain activity patterns (based on MRI) than with NTs.
However I think it's fair that ASD Level 3 could be renamed ASD-Aspergers. I've got no problem with that.