Report of the DSM-V Neurodevelopmental Disorders Work Group

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Moromillas
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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.


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ASPartOfMe
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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/


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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.



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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


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CEngAcolyte
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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
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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
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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
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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.



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08 Nov 2017, 1:51 am

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

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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.


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LavenderLilac
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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.



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12 Jun 2018, 9:46 am

LavenderLilac wrote:
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.


Welcome to wrong planet.

You need to leave “Autism” communities for “Autistic” or “Aspie” communities. “Autism” communitites are mainly for parents of kids on the spectrum. This is not the first time I have read here on WP from members about these parents trying to use them as voluntary prostitutes for their kids. Aspie communities are for us and are often run partially or completely by us.

Asperger's Support Group Meetups in Chicago

I am not from Chicago and can not vouch for these groups. In a big metropolitian area like Chicago there might be groups for women aspies only.


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“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
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12 Jun 2018, 4:11 pm

ASPartOfMe wrote:
LavenderLilac wrote:
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.


Welcome to wrong planet.

You need to leave “Autism” communities for “Autistic” or “Aspie” communities. “Autism” communitites are mainly for parents of kids on the spectrum. This is not the first time I have read here on WP from members about these parents trying to use them as voluntary prostitutes for their kids. Aspie communities Support Group Meetups in Chicago

I am not from Chicago and can not vouch for these groups. In a big metropolitian area like Chicago there might be groups for women aspies only.


Thank you. I was here under another account years ago. I would get endlessly bullied for saying these things. I'm glad things are changing.



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20 May 2019, 3:42 am

LavenderLilac wrote:
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.

It seems to me that what we need is a new term similar in meaning to "high functioning autism" but without the objectionable connotations. "Aspergers" isn't it; do you really need a category that excludes people who might be geniuses but who learned to talk later than age 3?

Here in NYC, for about a year now, I've been attending the monthly adult support group of what is now called the "Aspergers and High Functioning Autism Association" (soon to merge with the Aspergers / Autism Network). The support group is for "adults on the spectrum (or who suspect they might be)." So far I have NOT encountered any "adult children who act like 5 year olds." The same organization also has a monthly women's support group, which I attend too.

LavenderLilac wrote:
I'm not going through another Autistic parent making me feel suicidal over my inability to cope with someone childlike being around me.

Here, did you really mean "Autistic parent" (parent who is on the spectrum oneself) or "Autism parent" (parent of a child on the spectrum)?

LavenderLilac wrote:
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.

Here is a link to that blog post by Kassiane.

LavenderLilac wrote:
This is why we need Aspergers back again. We need different support. Not parents insisting we playdate with their children, and boundary pushing.

I'd say we need more groups for autistic women, and also more groups generally for "high-functioning" autistic adults, separate from parents.

Also, among both Aspies and HFA's, a much more significant distinction than the one between Aspies and HFA's is the distinction between those who are able to work (yet may have extreme difficulty finding and holding down jobs, without adequate support and accommodations) and those who are NOT able to work. Obviously, these two categories of people have very different needs.


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20 May 2019, 4:34 am

LavenderLilac wrote:
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.


What is "our culture"?. Aspies are free to associate with whom they want?? I'm pretty sure 99.9% of people with aspergers associate with people who are higher functioning or NT.

Whatever you are going through I am pretty sure some innocent autistic person or some overburdened harassed parent has done nothing to make your life miserable. Pretty sure you did that all on your own.



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20 May 2019, 10:03 am

cyberdad wrote:
What is "our culture"?. Aspies are free to associate with whom they want??

Not even all NT's, let alone all aspies, have the organizational abilities necessary to build one's own organizations, in which case one's ability to find appropriate in-person support groups is limited by the organizations that already happen to exist in one's local area.

LavendarLilac was complaining about the autism support organizations in her area, and the lack of a support group suitable for herself. Apparently, in her local area, there was an "Aspergers" support group that died around the time the diagnostic criteria changed and did not get replaced by something else that would have been appropriate for her.

I think her analysis of the problem is incorrect, but I nevertheless think it's likely that the issues she is talking about are real. In almost ANY social setting with a high male-to-female ratio, young women will likely get hit upon a lot, unless the leadership makes a point of discouraging this. Also, the phenomenon of some parents of autistic men being overly eager to play matchmaker for their sons is an issue that has been talked about elsewhere.

cyberdad wrote:
I'm pretty sure 99.9% of people with aspergers associate with people who are higher functioning or NT.

Sure they do, IF they have appropriate places to meet each other.

cyberdad wrote:
Whatever you are going through I am pretty sure some innocent autistic person or some overburdened harassed parent has done nothing to make your life miserable. Pretty sure you did that all on your own.

Even young NT women, let alone young autistic women, often have difficulty handling the kinds of social situations in which they are likely to get hit upon a lot. All the more so would most young women, even NT women, feel awkward in a situation where they were getting frequently hit upon not only by the men themselves, but also by parents trying to play matchmaker for their sons.


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20 May 2019, 1:58 pm

Just a friendly reminder that this is a necrobumped thread and LavendarLilac has not posted here since last July.

That said the issues discussed of the differences between the Autism community and Autistic community and females going to Autism support groups for help and parents trying use them as cum dumpsters for their children remain.

I am not so sure that if we were still under the old DSM IV these problems would be significantly less. To me the problem is not labeling but as mentioned lack of attention paid to the needs of adult autistics


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