Board index › General Discussion › Autism Politics, Activism, and Media Representation

Report of the DSM-V Neurodevelopmental Disorders Work Group

Page 10 of 11 [ 169 posts ]  Go to page Previous  1 ... 7, 8, 9, 10, 11  Next

Previous topic | Next topic

Acedia
Velociraptor
Velociraptor

User avatar

Joined: 26 Feb 2012
Gender: Male
Posts: 489

31 Jan 2014, 11:18 am

gonewild wrote:
As a physical scientist (geology) I find current attempts at defining by diagnosis various disorders under the umbrella of Autism quite unscientific. Questions need to be asked: on what physical basis are diagnosis made? Anyone with a birth defect, abnormal brain development, damage from toxins or chemicals during pregnancy, premature birth or abuse ought to be treated for those conditions and not be lumped in with people who represent a personality type that occurs naturally in humans that is, individuals who process the environment differently that what is considered to be normal, when normal is defined by the prejudices of the social majority. Where is the scientific justification for claiming that one group of behaviors defines Homo sapiens and that any person who deviates from this narrow prescription is defective? This prejudice against those who are 'disobedient' is a religious notion; not science. In fact there is a long history of religions persecuting the very people who fit the modern diagnosis of so-called Aspergers disorder - people who in fact have created civilization through science, engineering, technology and the arts.


I think that your post is testament to how the media has misrepresented Autism/Aspergers. The idea that people with autism are the driving force for civilization.

Read Han's paper, none of those kids he wrote about would be thought of as simply being smart. They were referred to him due to the severity of their learning problems. It should be the other way round - people who are introverted, geeky, socially anxious, quiet, reserved, and shy shouldn't be lumped in with those labelled autistic.



ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,910
Location: Long Island, New York

07 Apr 2014, 9:39 pm

US Department of Health and Human Services Interagency Autism Coordinating Committee Statement Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder

http://iacc.hhs.gov/publications/2014/s ... 0214.shtml


_________________
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


ChapterGrim
Emu Egg
Emu Egg

User avatar

Joined: 7 Jan 2013
Age: 31
Gender: Male
Posts: 7
Location: Scotland

23 Aug 2014, 10:02 pm

Welcome to the jungle. Or spectrum as it may be...


_________________
D.R. Gartland

Check out Ambrose Beirce' The Devil's Dictionary - notably "Mad"!
http://xroads.virginia.edu/~hyper/bierce/bierce.html


the-comander
Sea Gull
Sea Gull

User avatar

Joined: 21 Jul 2014
Age: 27
Gender: Male
Posts: 236
Location: boston area

28 Sep 2014, 2:09 pm

im probably not going to exactly make a lot of friends by pointing this out, but i would like to mention the fact that Aspergers has very little evidence of existing,that it was discovered by the nazis,that people with Aspergers are considered to be superior and better then people with autism and/or high functioning autism by society,that it specifically is designed to search out those who have problems with empathy i.e. concern and sympathy for others and super high intelligence, and that most people who get the diagnosis are white. i mean if you think about it its the perfect way to justify cherry picking through a group to find the people who are best equipped to build your gas chambers and least likely to question what they are doing without coming off as hypocrites when that means not completely getting rid of all the mentally ill. i mean pre ww2 the art of schizophrenics and the severely mentally ill had a pretty big, somewhat counter cultural following and a belief in a link between creativity and mental illness was pretty common.i mean they killed paul gosch who was one of the founders of german expressionism and the asylum he lived in was run by his brother in law. the nazis moved him to a different institution where he wasn't allowed to paint and was forced to do manual labor before he was eventually killed. what better way to squash that then by creating a superior elite and killing all the artists off? i mean think about it, a lot of schizophrenics arent ret*d and can offer things to society as well but hans Asperger never tried to save any of them. why would he? if your running a fascist dictatorship you don't want to save a small portion of the extremely paranoid people who think that the government is monitoring them constantly and that the man is putting computer chips in there brain friends if you can get rid of all the ones that don't talk normal and hinder society in anyway even better.

now do i think that all forums of autism are genetically related and that a person with a i.q. of 10 is the same as the kind of people who get diagnosed with Aspergers? no. i think there are many many kinds of autism and that scientists don't actually understand what they all are yet. but the evidence is heavily against Aspergers existing and honestly i think it being removed as a category is probably for the better. truth be told a lot of the people ive met who have Aspergers are nothing like me or i have very little in common with and at the end of the day i think that a lot of what it revolves around is a very specific stereotype. i mean its what i call myself in my real life because i want to not be hiding who i am and i feel like i have to or ill be seen as inferior but i dont honestly think that it has any real meaning besides signifying that im not crippled and that i have a few talents which are relatively impressive. i think that in 20 years they will discover that there are a bunch of type of autism some of which are very diffrent from others and i think we will have a better more scientificly acurete understanding of what this all means.



VioletYoshi
Snowy Owl
Snowy Owl

User avatar

Joined: 23 Apr 2014
Age: 42
Gender: Female
Posts: 162

07 Oct 2014, 10:05 am

Acedia wrote:
gonewild wrote:
As a physical scientist (geology) I find current attempts at defining by diagnosis various disorders under the umbrella of Autism quite unscientific. Questions need to be asked: on what physical basis are diagnosis made? Anyone with a birth defect, abnormal brain development, damage from toxins or chemicals during pregnancy, premature birth or abuse ought to be treated for those conditions and not be lumped in with people who represent a personality type that occurs naturally in humans that is, individuals who process the environment differently that what is considered to be normal, when normal is defined by the prejudices of the social majority. Where is the scientific justification for claiming that one group of behaviors defines Homo sapiens and that any person who deviates from this narrow prescription is defective? This prejudice against those who are 'disobedient' is a religious notion; not science. In fact there is a long history of religions persecuting the very people who fit the modern diagnosis of so-called Aspergers disorder - people who in fact have created civilization through science, engineering, technology and the arts.


I think that your post is testament to how the media has misrepresented Autism/Aspergers. The idea that people with autism are the driving force for civilization.

Read Han's paper, none of those kids he wrote about would be thought of as simply being smart. They were referred to him due to the severity of their learning problems. It should be the other way round - people who are introverted, geeky, socially anxious, quiet, reserved, and shy shouldn't be lumped in with those labelled autistic.


http://imgur.com/rWJyL9Y



SignOfLazarus
Veteran
Veteran

User avatar

Joined: 13 May 2014
Age: 958
Gender: Female
Posts: 540

07 Oct 2014, 2:00 pm

gonewild wrote:
As a physical scientist (geology) I find current attempts at defining by diagnosis various disorders under the umbrella of Autism quite unscientific. Questions need to be asked: on what physical basis are diagnosis made? Anyone with a birth defect, abnormal brain development, damage from toxins or chemicals during pregnancy, premature birth or abuse ought to be treated for those conditions and not be lumped in with people who represent a personality type that occurs naturally in humans that is, individuals who process the environment differently that what is considered to be normal, when normal is defined by the prejudices of the social majority. Where is the scientific justification for claiming that one group of behaviors defines Homo sapiens and that any person who deviates from this narrow prescription is defective? This prejudice against those who are 'disobedient' is a religious notion; not science. In fact there is a long history of religions persecuting the very people who fit the modern diagnosis of so-called Aspergers disorder - people who in fact have created civilization through science, engineering, technology and the arts.


Hi gonewild!

Since you write of the "umbrella of Autism" I suspect you are referring to the recent changes that came out in the new DSM [the fifth edition]. Lucky for you, the CDC provides a handy online reference to those criteria here: http://www.cdc.gov/ncbddd/autism/hcp-dsm.html.

It would probably be helpful to the discussion if you could review them and provide with clarity specific criticisms you have, then it would be more productive and maybe people would actually have helpful feedback.
Ok great.
:D

[I have to admit here that I love the RDoC and have in fact written about it before, but I find it frustrating when someone says that they are critical of something in such a vague manner. Actually I find it really bizarre]


_________________
I don't know about other people, but when I wake up in the morning and put my shoes on, I think, "Jesus Christ, now what?"
-C. Bukowski


Moromillas
Velociraptor
Velociraptor

User avatar

Joined: 3 Jul 2014
Gender: Male
Posts: 455

07 Oct 2014, 9:40 pm

SignOfLazarus wrote:
It would probably be helpful to the discussion if you could review them and provide with clarity specific criticisms you have, then it would be more productive and maybe people would actually have helpful feedback.


Soon. (tm)

I've a lot going on.



ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,910
Location: Long Island, New York

06 Nov 2015, 7:46 pm

Study says elimation of Aspergers has not increased stigma amoung American Adults
http://www.disabilityscoop.com/2015/11/05/study-downside-aspergers/20934/


_________________
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


greenylynx
Snowy Owl
Snowy Owl

Joined: 25 Feb 2016
Age: 31
Gender: Male
Posts: 149

28 Feb 2016, 1:02 pm

I find that article interesting. While there is no actual connection between the changes to the DSM and the rise of incidence of this, it genuinely feels like the use of Autism as the new r-word rose in popularity at the same time, especially in video games. I'm unsure about in other games, but it's definitely stigmatized big time in Team Fortress 2. For the past few years I've played on organized teams with other players in a league. There was one match this season that just was absurd to me. In TF2 you can set up a line of text to appear in chat when you push a key; I had a teammate that had a key set up to type "Autist down" into chat several times each time he scored a kill on the other team. Something else I've seen done is people purposely change their names with intent to insult as well. I had a friend change their name to "severe autism" and then somebody I did not know personally had their in game name set to "autism awareness" just because they thought it would be fun, and I can't count the number of times I've seen comments in this vein left on people's profiles just as a joke.



gingerpickles
Veteran
Veteran

User avatar

Joined: 17 Jan 2016
Age: 59
Gender: Female
Posts: 515
Location: USA

11 Jun 2016, 5:23 am

ASPartOfMe wrote:
http://www.businessinsider.com/fewer-autism-diagnoses-with-dsm-5-criteria-2014-1


BINGO

at risk of sounding like a conspiracy nut.... now they can go "what epidemic"? and not examine the physical cause(s) of neonatal neuro damage that brings on the symptoms for example maybe previously said safe foods/drugs that were tested on the fly and by handwavium magic? maybe?

My belief is that the genes are already present that maybe a on/off coping mechanism for environment but they are getting switched on at too much frequency because an outside modifier maybe like autoimmune disorder of the brain. I might say it better with more sleep


_________________
FFFFF Captchas.


CEngAcolyte
Tufted Titmouse
Tufted Titmouse

Joined: 4 Jul 2016
Age: 37
Gender: Male
Posts: 30

16 Jul 2016, 8:25 pm

JUST WANTED TO POINT OUT THAT THE DSM HAS ALSO CHANGED ITS POSITION ON ROMAN NUMERALS: IT IS NOW 'DSM-5,' NOT DSM-V



bryanmaloney
Blue Jay
Blue Jay

User avatar

Joined: 29 Apr 2013
Age: 58
Gender: Male
Posts: 99

20 Jul 2016, 2:55 pm

gingerpickles wrote:
ASPartOfMe wrote:
http://www.businessinsider.com/fewer-autism-diagnoses-with-dsm-5-criteria-2014-1


BINGO

at risk of sounding like a conspiracy nut.... now they can go "what epidemic"? and not examine the physical cause(s) of neonatal neuro damage that brings on the symptoms for example maybe previously said safe foods/drugs that were tested on the fly and by handwavium magic? maybe?

My belief is that the genes are already present that maybe a on/off coping mechanism for environment but they are getting switched on at too much frequency because an outside modifier maybe like autoimmune disorder of the brain. I might say it better with more sleep


Let's try this again: The "neonatal neuro damage" probably does not actually exist as such. What is more likely is that there is a cascade of influences, only some of which are actually neurological, that come together to produce ASD. As for "what epidemic"--there is no "epidemic", and any claims of an "epidemic" are just fear-mongering, as the South Korean study has shown. The South Korean study is the only one that diagnosed a complete age cohort instead of just making wild-ass guesses based on parent-initiated rates of diagnosis. What the South Korean study found was that about 2.5% of the population can be diagnosed as having ASD if you actually look at an entire population. However, most of them were not "in need of services".



CircusBear
Butterfly
Butterfly

Joined: 13 Dec 2016
Age: 30
Gender: Male
Posts: 11

14 Dec 2016, 9:56 am

CEngAcolyte wrote:
JUST WANTED TO POINT OUT THAT THE DSM HAS ALSO CHANGED ITS POSITION ON ROMAN NUMERALS: IT IS NOW 'DSM-5,' NOT DSM-V



Excellent. No one needs roman numerals in their life.



Luna035
Raven
Raven

User avatar

Joined: 29 Jan 2017
Gender: Female
Posts: 112

27 Oct 2017, 4:21 pm

OutlawSteph wrote:
Tony Atwood has pointed some interesting problems with the DSM criteria of AS. They should look at his research.
I agree. I found tony attwood relevant, empathic and insightful.



ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,910
Location: Long Island, New York

08 Nov 2017, 1:51 am

https://spectrumnews.org/opinion/viewpoint/portrayals-autism-television-dont-showcase-full-spectrum/

Quote:
If you’re a fan of either of two new television shows that debuted in the United States this September — “Atypical” on the streaming service Netflix or “The Good Doctor” on ABC — I’ve got news for you. You’re watching an overly positive depiction of autism that doesn’t reflect reality for the majority of people on the spectrum.

To the TV-watching public, autism has come to mean the verbal, higher-skilled, savant end of the spectrum, because individuals at that end make for interesting characters.

Penny’s door is seen as cute and endearing; in real life, the stereotypies many adults with autism have are self-injurious and downright dangerous.

These enormous disparities reflect a broader challenge: The word ‘autism’ is applied so broadly as to be practically meaningless. In the previous version of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-IV), ‘autistic disorder’ was defined as a specific cluster of characteristics, including abnormal social interaction and communication, and a restricted repertoire of activity and interests.

These days, someone with autism can have a genius-level intelligence quotient or have intellectual disability and a score far below average. It can include someone who has no language, minimal language or intact language. It can apply to an individual who has self-injurious, aggressive behavior, or someone who has trouble navigating the social scene in the school cafeteria. It can describe a person who graduated from Harvard Law School or an individual who exited high school with a certificate of attendance.

Thanks to years of research, we know that autism encompasses core features that are present in each person who is diagnosed. Every individual with autism has to have impaired social communication skills and restricted or repetitive behaviors to merit a diagnosis. But beyond that, these individuals’ abilities are vastly different. Saying someone has autism provides almost no information about the type of treatment they need; this is the opposite of personalized medicine.

The autism community must find new terms to apply to subtypes of the condition so that the diagnosis is meaningful and leads to a specific set of appropriate treatments. Developing more specific language around autism will allow clinicians and others to personalize their approach to care and provide benefits to all people on the spectrum.

The DSM-5 was supposed to do this; it was supposed to provide greater specificity so that an autism diagnosis would point toward potential services. But hardly any clinicians apply the criteria in the way they were intended. For instance, clinicians are supposed to use a table to indicate the level of severity. But almost none do. Instead, everyone is lumped together as having diagnosis 299.0: autism spectrum disorder.

The use of this term is a disservice to individuals on both ends of the spectrum, and to those in the middle. It may, unintentionally, be depriving many people of the attention and supports they need, because on TV, autism doesn’t look that bad. On the other end of the spectrum, several self-advocates who have discussed this issue with me recounted how hard it was to access services because they didn’t fit the mold of severe autism and “didn’t look disabled.”

Research has revealed how incredibly heterogeneous autism is; to use a single term to describe it is a contradiction

Hollywood’s blind spot — or maybe it’s a blind eye — speaks to our society’s aversion to confronting the realities of autism. But in the end, it’s not Hollywood’s fault that autism is presented unrealistically.

The reality of severe autism can be disturbing. What we see on TV and in movies reflects our own reluctance to deal with the enormous burdens severe autism places on individuals and their families.


Bolding and Underlining Mine

I am reluctant to post this because of what this author Alison Singer did 11 years ago. While criticizing portrayals for Autism she was involved in one of the hideous portrayals of Autism of all time back in 2006 when during an Autism Speaks promo in which she said in front of her autistic so she thought about driving off of the George Washington bridge but could not do it because of her NT daughter. But in this opinion, piece she says what a lot of us have said about the DSM 5 and while it is it emphasizes the unfairness of stereotypes towered the severely autistic it does mention the "not disabled enough to be autistic" crap to be autistic so many us have to put and the middle functioning was given a shoutout which I do not remember ever being discussed in an opinion piece.

I agree with her about the DSM 5 being the root of the many problems including the media stereotypes. I disagree with her that we need new terms. I would prefer subtypes because the core traits are autistic.


_________________
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


LavenderLilac
Butterfly
Butterfly

Joined: 12 Jun 2018
Age: 42
Gender: Female
Posts: 12
Location: Chicago, IL

12 Jun 2018, 3:21 am

TW suicide

I left the Autism community when Aspergers was removed. I get no support from Autism communities or worse, am designated as a caregiver because I'm higher functioning. If I say no to this I'm emotionally manipulated and abused by parents for saying no to their child. If I'm harassed or say no to a "nice guy", I'm told I need to understand and it's mean of me to hold any boundaries with Autistic people.

This wasn't an issue in Aspergers communities because the people there had enough social understanding to respect people's boundaries, and their parents weren't so desperate for a forever caregiver they'd harass anyone female.

The truth is there are significant differences in the way Asperger's and Autism people function. I know when going to an Asperger's group I won't be met with adult children who act like 5 year olds I have nothing in common with. You see it as an issue of superiority, I and many other Aspergers people see it as an issue of needs not being met.

A lot of people were abandoned when the diagnosis of Aspergers was eliminated. It'd be nice if they could find a community supportive of them without the difficulty of trying to find each other in Autism groups where they may end up broken and exhausted from fighting off harassment.

I'm throwing in my perspective as I've seen posts from others who feel the same way. I'm also prepared to get hit with claims of superiority and discrimination. I would love if everyone could get along, but that's not reality for some people.

I'm not going through another Autistic parent making me feel suicidal over my inability to cope with someone childlike being around me. That's right, it is that bad. So is the ignoring of how women are harassed into being a girlfriend to the point some women felt so unsafe in the Autism community they could no longer participate.

This site won't let me post links. Please search Autism groups are not for finding a girlfriend by Kassiane.

This is why we need Aspergers back again. We need different support. Not parents insisting we playdate with their children, and boundary pushing. We don't need to be controlled and regimented and many Autistic parents seem to be unable to cope with people they cannot hold control over.

You get to have a culture. Ours was torn from us, because like crabs in a bucket no one can escape unless everyone does. People with Autism got upset people with Aspergers were having more success, and they needed to see that everyone was held back at the same place. Cause if some Autistic people gain independence, no one will be around to get pushed into the caregiver role.

I'm sorry this was so long, there was a lot to cover. I also am expecting tomorrow everyone will be mad at me and screaming how I have a superiority complex. I felt despite risking more emotional abuse I should at least try to speak up. It'd be nice to have a social community I felt comfortable in.

As it is now the Autism community has been hostile if not outright toxic to me. because no one can say no to an Autistic person without being bullied into acceptance.