Losing the Aspergers/Autism explination?

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ASPartOfMe
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02 Jan 2015, 12:34 am

There are a bunch of threads about not people believing their official diagnosis. My fear is not that I was mis diagnosed but that with the ever-changing descriptions/explanations of Autism I won’t be considered autistic and things will be reverted back to having no explanation for who I am. I guess this is a natural reaction from going decades without an explanation, getting one, then having it immediately taken away by the DSM 5. I wish I could dismiss this as a silly fear born out of the bad luck of finding out I was Autistic at an inopportune moment. But I see a lot of things happening that make me think this nightmare is a realistic possibility.

No explanation will ever 100% fit so there will always be room for doubt and this will always be an excuse needed for naturally contrarian people to doubt themselves and spread doubt among others. But despite contrarian instinct in myself, the Aspergers diagnosis explained most of me, enough of me for acceptance. Not only the traits but the cause largely genetic, ie I was born this way.

But I see most of the money flowing in the direction of proving causations that are environmental be it food or some other toxin. The genetic explanation was never firmly proven, so maybe environmental will actually be proven or people with enough money and desperation will make it the mainstream consensus explanation for cause. If the cause is, or perceived to be environmental then we will never be seen as "different" but "mutants" who were born human, but had it poisoned away. If that is the belief, not wanting a cure will be a symptom of the "disorder". I know what you are thinking none of this has scientific basis, there will never be a cure. I say to you, you underestimate the persuasiveness of fear and desperation. Why most think a cure is impossible baffles me. When you come down to it our brains and neurons are materials and chemicals related in way sophisticated way we don't quite understand yet. We and I have talked endlessly about how a lot of people desperately want to erase what we loosely describe as high functioning out of the spectrum.

As much as the trends in the nuerotypical world scare me, it is the trends within the community that worries me the most. If we were united we would band together and know who and what we are, while advocating and hoping for a better future. As I have mentioned many times there are many autistics who have bought into the idea certain "high functioning" people as not autistic, frauds or just people who have deluded themselves. When I was diagnosed, TOM served a major explanation for who I am and why things happened to me the way they did. Now Simon Baron Cohen is considered a charlatan around here. A lot of the Extreme Male Brian Theory make sense to ME. And while I have sensory sensitivities, it is mild enough that outside of a few uncomfortable tense encounters caused by unwanted touch they have not been inhibiting to my life. When I mentioned Gillberg’s criteria for Aspergers diagnosis there is no reaction so I guess nobody can relate.

My hope is that with the increasing belief in "Autisms" not "Autism" I will get a sub category that for the most part will explain me. Who knows if I will be alive for that? Right now it feels like things are slipping back to all the decades when there was no explanation. I survived all those years before, and if I have to I will do it again but that prospect fills me with dread. In truth, it will never be exactly the same as it was before because I did find an explanation that did and still and probably always will make sense. But if my fears come to fruition my explanation/description will be considered debunked, a relic of the 2000’s. I will have no explanation beyond odd and different yet again.


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Norny
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02 Jan 2015, 5:58 am

It can only be speculation when posters disagree with or readily dismiss ideas such as theory of mind and all that, as nobody here is really in the position to prove or disprove such things.

IMO ToM clearly exists. I doubt anybody here could convince me otherwise.

I don't think you should worry about losing your diagnosis simply because it appears to be metamorphosing based on some posts. It may change one day when the brain is more accurately understood but in the short-term I highly doubt it.

Why do you say your diagnosis was taken away by the DSM 5?


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kraftiekortie
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02 Jan 2015, 6:48 am

My feeling: autism is a Spectrum.

One does not have to be autistic ALL THE TIME in order for one to be truly autistic.

We are human, too. Sometimes, we might react "neurotypically" to something. This just might be because we're human.

This doesn't take away our overall neurodiverse take on things.



something_
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02 Jan 2015, 7:01 am

Was anything really lost with DSM-V, what was aspergers is now ASD-1, just a change of term. Don't get me wrong I prefer the term aspergers just because it is well established and people have an idea of what it means, but it is not like anyones diagnosis has been lost.



ASPartOfMe
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03 Jan 2015, 6:33 am

I do not fear losing anything "official". What I fear losing is the community I had found but would now view Autism as something I am not.

Despite not losing an "official diagnoses" I feel something important was taken from me with the DSM 5 killing off Aspergers. Don't get me wrong "Autism" does explain a lot about who I am. "Aspergers" explained more. As an official diagnoses and for the most part community consensus it helped me find a large part of my identity. But that was the Aspergers of average to above average intelligence with TOM deficits etc. not the colloquial Asperger's of Shelden, elitism etc of today which does not include me. Now the if community comes to a consensuses TOM doesn't exist or is it's own thing not Autism I lose that commonality. If a lot of the so called higher end of autism is not considered Autism anymore I am starting from scratch which at age 57 is very unappealing.


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Waterfalls
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03 Jan 2015, 8:19 am

I never felt I quite fit AS easily so don't mind that change so much as the spirit behind it, which seems to be that autism is permanent and therefore if someone in the present finds any satisfaction and functions, they aren't really on the spectrum. That's an ugly road I hate, and worse than the researchers and diagnosticians going down it is when we as a community do. Because it doesn't get easy.

I agree with you. We should support one another. Just doesn't necessarily happen that way.



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03 Jan 2015, 5:00 pm

ASPartOfMe wrote:
I do not fear losing anything "official". What I fear losing is the community I had found but would now view Autism as something I am not.

Despite not losing an "official diagnoses" I feel something important was taken from me with the DSM 5 killing off Aspergers. Don't get me wrong "Autism" does explain a lot about who I am. "Aspergers" explained more. As an official diagnoses and for the most part community consensus it helped me find a large part of my identity. But that was the Aspergers of average to above average intelligence with TOM deficits etc. not the colloquial Asperger's of Shelden, elitism etc of today which does not include me. Now the if community comes to a consensuses TOM doesn't exist or is it's own thing not Autism I lose that commonality. If a lot of the so called higher end of autism is not considered Autism anymore I am starting from scratch which at age 57 is very unappealing.



This makes no sence to me the criteria in the DSM for autism and for Aspergers where basiclly exactly the same but autism had one extra section requarding language aqua situos Other then that they were exactly the same, TOM issues seem to be considered common in the community what you seem to be worring about are the ever changing and developing theories surrounding aspect of autism things no one agrees on really so I wouldn't worry to much


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ASPartOfMe
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03 Jan 2015, 11:52 pm

Waterfalls wrote:
I never felt I quite fit AS easily so don't mind that change so much as the spirit behind it, which seems to be that autism is permanent and therefore if someone in the present finds any satisfaction and functions, they aren't really on the spectrum. That's an ugly road I hate, and worse than the researchers and diagnosticians going down it is when we as a community do. Because it doesn't get easy.

I agree with you. We should support one another. Just doesn't necessarily happen that way.


Thank you for your support not and not just with this thread. You were one of the only people who seemed to fully understand what I have been trying to say over the last year. When I came on WP the mode was in large part that while the DSM 5 while a bad, damaging thing they would not stop us from using the name for the positives like explanation, identity etc. While not expecting a love a thon on an Autism site but I can't say I saw this coming because after all Aspies don't like change. :roll: That the community would totally reverse themselves is still completely baffling to me. But like you said it did happen that way. I guess I have to accept, we lost big time, the Aspergers name means something different with a lot of negatives now. Even if the DSM by some miracle reversed itself and brought Asperger's back it's to late to save it I'm afraid.

So I guess we are now in the limiting further damage mode. Wearying, totally not enjoyable, but very worthy task.


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04 Jan 2015, 8:43 am

ASPartOfMe wrote:
Thank you for your support not and not just with this thread. You were one of the only people who seemed to fully understand what I have been trying to say over the last year. When I came on WP the mode was in large part that while the DSM 5 while a bad, damaging thing they would not stop us from using the name for the positives like explanation, identity etc. While not expecting a love a thon on an Autism site but I can't say I saw this coming because after all Aspies don't like change. :roll: That the community would totally reverse themselves is still completely baffling to me. But like you said it did happen that way. I guess I have to accept, we lost big time, the Aspergers name means something different with a lot of negatives now. Even if the DSM by some miracle reversed itself and brought Asperger's back it's to late to save it I'm afraid.

So I guess we are now in the limiting further damage mode. Wearying, totally not enjoyable, but very worthy task.

Thank you for that, and thank you as well for the support you've given me.



something_
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04 Jan 2015, 9:23 am

still don't understand what has been lost under DSM-V. It is not like there was an accurate diagnosis of 'aspergers' that has been eliminated leaving people with a less accurate diagnosis of 'ASD' because everything that aspergers is is now included at ASD level of support level 1. Aspergers has long been considered part of the autistic spectrum so autistic spectrum disorder is an accurate description. It is literally just a change of term to clear up the confusion between HFA and aspergers.

Having said that, as someone who was diagnosed last year with ASD (my assessors in the UK said the the ICD is going the same way so they have stopped diagnosing aspergers), I would have preferred a diagnosis of aspergers. Just because people have a better idea of what it is, ASD sounds a lot more severe as the general people won't have an understanding. But if it ever comes up I just say 'I was diagnosed with ASD, in the past it would have been aspergers but they have stopped diagnosing that in favour of a broader diagnosis of ASD with different levels of need' it is as simple as that. I know the literature on aspergers is still relevant to me, the experiences of those diagnosed with aspergers will still be relevant to me, and the literature and experience of those diagnosed with ASD with the lower levels of support will be relevant to me in the future. Nothing has been lost or taken away.



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04 Jan 2015, 6:02 pm

something_ wrote:
still don't understand what has been lost under DSM-V. It is not like there was an accurate diagnosis of 'aspergers' that has been eliminated leaving people with a less accurate diagnosis of 'ASD' because everything that aspergers is is now included at ASD level of support level 1. Aspergers has long been considered part of the autistic spectrum so autistic spectrum disorder is an accurate description. It is literally just a change of term to clear up the confusion between HFA and aspergers.

Having said that, as someone who was diagnosed last year with ASD (my assessors in the UK said the the ICD is going the same way so they have stopped diagnosing aspergers), I would have preferred a diagnosis of aspergers. Just because people have a better idea of what it is, ASD sounds a lot more severe as the general people won't have an understanding. But if it ever comes up I just say 'I was diagnosed with ASD, in the past it would have been aspergers but they have stopped diagnosing that in favour of a broader diagnosis of ASD with different levels of need' it is as simple as that. I know the literature on aspergers is still relevant to me, the experiences of those diagnosed with aspergers will still be relevant to me, and the literature and experience of those diagnosed with ASD with the lower levels of support will be relevant to me in the future. Nothing has been lost or taken away.


I agree.
Personally, I prefer ASD as a diagnosis though. Aspergers came to be used almost derogatorily in a colloquial sense... Many came to believe it didn't exist at all and that "nerds" or "geeks" that were socially awkward were being diagnosed with autism. I prefer ASD because now people can't say that that's happening (though some still do try to) because everything simply falls under "autism."


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04 Jan 2015, 6:51 pm

In the new DSM, for ASD, it says that those with an established diagnosis of AS should be diagnosed with ASD. So you are still considered autistic. I actually prefer it this new way, because I think the perception of Aspergers has been turned to crap from the media, and idiots going around self-diagnosing (I'm talking about the people who basically have no idea what it is). At this point, saying "I have Aspergers" is like saying "I get hiccups sometimes."


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04 Jan 2015, 10:21 pm

Jezebel wrote:
Aspergers came to be used almost derogatorily in a colloquial sense... Many came to believe it didn't exist at all and that "nerds" or "geeks" that were socially awkward were being diagnosed with autism. I prefer ASD because now people can't say that that's happening (though some still do try to) because everything simply falls under "autism."


MadHatterMatador wrote:
I actually prefer it this new way, because I think the perception of Aspergers has been turned to crap from the media, and idiots going around self-diagnosing (I'm talking about the people who basically have no idea what it is). At this point, saying "I have Aspergers" is like saying "I get hiccups sometimes."


Yeah the media coverage sucks at times, I can't argue with that. Buying into it, enabling the slanderer’s WE DID THAT TO OURSELVES. Asperger’s syndrome was a name designated in honor of the first Autism Advocate who protected his patients from Nazi Eugenics. And we threw him under the bus http://en.wikipedia.org/wiki/Throw_under_the_bus because others thought badly of us, which they would do anyway. Back in the day the media and pretty much everybody thought that gays should not be teachers because they would seduce and convert the children into the “gay lifestyle”. That is a hell of a lot worse then whatever they say about Aspergers. It would have been easy for the gay community to disown the term but they did not. That is a big reason why they have gained so much while we have not. The sad part is running away is at best a temporary band aid to this perception problem. A month or so ago when the whole Seinfeld hub-bub was going on the media had some more bad things say about us. There was a whole bunch of columns saying High Functoning Autism is not real Autism it is a bunch of excuses makers, who trivialize people with real autism another words very similar to the things said about Aspergers. So are we going to give up using HFA(there are some legitimate reasons for not using functioning labels but they are irreverent to this argument) or Autism now?

Where are all the idiotic self diagnosers these people so many keep talking about? In online and in person conversations with the self diagnosed (I’m an not talking about the “Am I autistic posters” that is not self diagnosis) they are as or more knowledgeable about the spectrum as the professionally diagnosed and very hurt by how they are dismissed by people inside and outside the spectrum. Until I see documented evidence to the contrary I believe this popular idea of hoards of Aspie wannabees be it self diagnosed or over diagnosed, fakers etc is all an urban legend http://www.merriam-webster.com/dictiona ... n%20legend


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05 Jan 2015, 9:32 am

something_ wrote:
Was anything really lost with DSM-V, what was aspergers is now ASD-1, just a change of term. Don't get me wrong I prefer the term aspergers just because it is well established and people have an idea of what it means, but it is not like anyones diagnosis has been lost.

I think maybe some who had PDD-NOS previously might not fit under the new criteria. It seemed to allow for more discretion by the Dr for those who didn't fit neatly within the requisite criteria.

I agree that for those who understand the changes, Asperger's and ASD are essentially interchangeable. However, for me a diagnosis is primarily a communication tool, to help other understand better when I choose to disclose to them. Unfortunately "autism" still carries a lot of weight as a word in the wider population, which often hinders that conversation.



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05 Jan 2015, 9:51 am

kraftiekortie wrote:
My feeling: autism is a Spectrum.

One does not have to be autistic ALL THE TIME in order for one to be truly autistic.

We are human, too. Sometimes, we might react "neurotypically" to something. This just might be because we're human.

This doesn't take away our overall neurodiverse take on things.


Not to be confrontational, but how are you not autistic all the time? I can't even fathom what you mean by this. I experience the world autistically. I am curious and envious that you have a glimpse into the world of the neurotypical.