Worried about changes in how people see autism

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AgentPalpatine
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23 Apr 2013, 2:24 pm

I don't understand what the above post is supposed to mean in this discussion.


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Callista
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23 Apr 2013, 2:28 pm

Well--1:50 is double as common as 1:100. Still... 1:50 is not extreme, and I don't think it's an unrealistically high rate.

I'm not begrudging the new diagnoses to the people who need them. If they need help, I'm all for the diagnosis. Technically it's not the high numbers of diagnoses that bother me at all, but the way people may react to it by either discounting autism as a fad diagnosis or assuming that autistic people don't really need help because it's mild. I see this with ADHD all the time despite that ADHD can be a real problem that in the most severe cases makes it impossible to live independently. But often times, people with ADHD don't get help because it's assumed to be mild, just a matter of learning to stay in your seat instead of this global executive-function, attention, learning thing that really takes some doing to work with so you can live your life the way you want instead of always being lost in a fog.

We need this. But at the same time I worry sometimes about the way people seem to swing from one extreme to the other--going from believing that autism is obvious, severe, extreme, and rare, discovering that that isn't true, and responding by completely flipping to the idea that it's a minor thing that can essentially be ignored.

Which is bad for everybody concerned, whether you're new to the label or you've had it for a long time.

I guess what I want mostly is for the reputation of autism as a spectrum--extremely diverse expressions of the same thing, ranging from barely-there cases just a little past the "nerdy" subclinical level, to extreme cases that are obvious to the casual passerby and require intensive support... and everything in between. I want everybody to get what help they need, and have their experiences recognized as valid, and I don't want the increase in autism diagnosis to change that.


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Last edited by Callista on 23 Apr 2013, 2:30 pm, edited 1 time in total.

boywonder
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23 Apr 2013, 2:29 pm

sorry about that



rapidroy
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23 Apr 2013, 5:04 pm

AgentPalpatine wrote:
rapidroy wrote:
Can't you get an ASD Dx as PDD-NOS missing some of the ASD criteria? thats going away isn't it? I'm not calling all of these people out as not autistic as meny certinly are however meny are likely just shy introverted kids getting a label. All depends were you draw the line.


Yes, it does depend where you draw the line. There is no "acid test" for ASDs based on neurology, practioners have to base off of observed and/or documented critera.

I'd rather the line be inclusive, because the issues caused by a missing DX are far more extreme than the issues caused by a false positive.

In fact, due to social constraints, the risk of false positives is lower than it would be due to practioner random error. Simply put, individuals who don't appear to have ASDs arn't going to be refered for an ASD DX.


You have more trust in the private medical industry then I do, the assesments arn't cheap and I think some parents push really hard for an ASD Dx as its the current go to Dx for any personallity, interaction issue. A case for atypical-ASD I think can be made if the bar is set low enough, anyway the way its set up now if you don't have everything you don't get ASD, instaid you get SCD so that may just fix Callista's fear, the ASD numbers will fall.



animalcrackers
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23 Apr 2013, 5:34 pm

AgentPalpatine wrote:
I'd rather the line be inclusive, because the issues caused by a missing DX are far more extreme than the issues caused by a false positive.


Me too.

Callista wrote:
I guess what I want mostly is for the reputation of autism as a spectrum--extremely diverse expressions of the same thing, ranging from barely-there cases just a little past the "nerdy" subclinical level, to extreme cases that are obvious to the casual passerby and require intensive support... and everything in between. I want everybody to get what help they need, and have their experiences recognized as valid, and I don't want the increase in autism diagnosis to change that.


I'm not sure that most people really understand the concept of autism being a spectrum as it is...but I understand what you're saying.

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NIMBY

NIMBY
From Wikipedia, the free encyclopedia
Jump to: navigation, search
An airport is a typical example of a development that can cause a NIMBY reaction: developers may claim economic benefits for the city, while locals may benefit from improved transport links and new jobs—but they may oppose it with objections to the noise, pollution and traffic it will generate.
Unfinished tower in Tenleytown, Washington, D.C. that was later removed as a result of complaints from the local neighborhood
Motorists requesting less car traffic in their street

NIMBY (an acronym for the phrase "Not In My Back Yard"), or Nimby, is a pejorative characterization of opposition by residents to a proposal for a new development because it is close to them, often with the connotation that such residents believe that the developments are needed in society but should be further away. Opposing residents themselves are sometimes called Nimbies.

Projects likely to be opposed include but are not limited to tall buildings, chemical plants, industrial parks, military bases, wind turbines, desalination plants, landfills, incinerators, power plants, prisons,[1] mobile telephone network masts, legal abortion clinics,[2] schools, kindergartens, nuclear waste dumps, youth hostels, wind farms, golf courses, sports stadiums, housing developments, and especially transportation improvement schemes (e.g. new roads, bridges, passenger and freight railways, highways, airports, seaports).

The NIMBY concept may also apply more generally to people who advocate some proposal (for example, austerity measures like budget cuts, tax increases, or layoffs), but oppose implementing it in a way that would require sacrifice on their part


I think you're comparing what happens when people say "Not In My Backyard" to debates about diagnosing autism and where the cut-off lines between "autistic" and "not autistic" should be drawn...sort of like a metaphor where:

Backyard = autism diagnosis

Residents who may or may not say "Not In My Backyard" = autistic people (and/or people with an interest in autism or the diagnostic criteria....like doctors and parents of autistic children)

"Project" or thing being brought into the "backyard" = the new diagnostic criteria, people with milder autism, and/or a different way of conceptualizing autism

Am I sort of understanding what you meant?


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AgentPalpatine
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23 Apr 2013, 6:23 pm

rapidroy wrote:
AgentPalpatine wrote:
rapidroy wrote:
Can't you get an ASD Dx as PDD-NOS missing some of the ASD criteria? thats going away isn't it? I'm not calling all of these people out as not autistic as meny certinly are however meny are likely just shy introverted kids getting a label. All depends were you draw the line.


Yes, it does depend where you draw the line. There is no "acid test" for ASDs based on neurology, practioners have to base off of observed and/or documented critera.

I'd rather the line be inclusive, because the issues caused by a missing DX are far more extreme than the issues caused by a false positive.

In fact, due to social constraints, the risk of false positives is lower than it would be due to practioner random error. Simply put, individuals who don't appear to have ASDs arn't going to be refered for an ASD DX.


You have more trust in the private medical industry then I do, the assesments arn't cheap and I think some parents push really hard for an ASD Dx as its the current go to Dx for any personallity, interaction issue. A case for atypical-ASD I think can be made if the bar is set low enough, anyway the way its set up now if you don't have everything you don't get ASD, instaid you get SCD so that may just fix Callista's fear, the ASD numbers will fall.


If your issue is that the assessments arn't cheap, then what's the orgin of your concern about false positives? I'd think you'd be more concerned about false negatives, which is something we see many of here on WP.


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loner1984
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23 Apr 2013, 6:35 pm

i think it will always stay like this, its hard to people to understand stuff they cant see.

I mean even today you will still find a lot of places on the internet, that people still think, this stuff is just, oh they are just lazy and stuff like that.

When a person is missing a leg, that is just easier to understand because people can see that.



rapidroy
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23 Apr 2013, 7:53 pm

AgentPalpatine wrote:
rapidroy wrote:
AgentPalpatine wrote:
rapidroy wrote:
Can't you get an ASD Dx as PDD-NOS missing some of the ASD criteria? thats going away isn't it? I'm not calling all of these people out as not autistic as meny certinly are however meny are likely just shy introverted kids getting a label. All depends were you draw the line.


Yes, it does depend where you draw the line. There is no "acid test" for ASDs based on neurology, practioners have to base off of observed and/or documented critera.

I'd rather the line be inclusive, because the issues caused by a missing DX are far more extreme than the issues caused by a false positive.

In fact, due to social constraints, the risk of false positives is lower than it would be due to practioner random error. Simply put, individuals who don't appear to have ASDs arn't going to be refered for an ASD DX.


You have more trust in the private medical industry then I do, the assesments arn't cheap and I think some parents push really hard for an ASD Dx as its the current go to Dx for any personallity, interaction issue. A case for atypical-ASD I think can be made if the bar is set low enough, anyway the way its set up now if you don't have everything you don't get ASD, instaid you get SCD so that may just fix Callista's fear, the ASD numbers will fall.


If your issue is that the assessments arn't cheap, then what's the orgin of your concern about false positives? I'd think you'd be more concerned about false negatives, which is something we see many of here on WP.


The issue I see is that becouse the assesments are expencive and conducted often by private firms the people doing the test may feel a little extra pressure to provide the outcome the parents paying for it are looking for. Some parents may even shop around, Its like the driving test you do to get your licence, some locations have a 98% pass rate, others a 60% pass rate, is it the quality of the drivers createing this or the variance of the testers? I think there can be a bit of a game to this from what I have read on here. The hard part to making opinions about this online is when people claim to be positive or negitive I can never be sure becouse were simply taking their word for it as we can't see them in person to judge.



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23 Apr 2013, 9:08 pm

I was really happy when I heard this, actually because it made me feel less alienated. Like, they're treating aspies like human beings now. As long as others are getting treated for their disabilities, and it's understood that being an aspie can be difficult, I have no problem here.



AgentPalpatine
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23 Apr 2013, 9:11 pm

rapidroy wrote:
The issue I see is that becouse the assesments are expencive and conducted often by private firms the people doing the test may feel a little extra pressure to provide the outcome the parents paying for it are looking for. Some parents may even shop around, Its like the driving test you do to get your licence, some locations have a 98% pass rate, others a 60% pass rate, is it the quality of the drivers createing this or the variance of the testers? I think there can be a bit of a game to this from what I have read on here. The hard part to making opinions about this online is when people claim to be positive or negitive I can never be sure becouse were simply taking their word for it as we can't see them in person to judge.


Honestly, I don't see people shelling out money for a DX if there arn't substanial ASD traits already. It's not like they just grab people off the middle of the street and pay for a diagnois. If there's enough indications to merit a DX referal, then the risk of a false positive is already low.

And if there are a few professionally performed false positives, what are the implications? I would hope that anyone who recieves a ASD DX would still recieve the same standard of medical care for any other issues. There are issues with being placed on a different educational track, but that speaks far more to the motivations of adminstrators as opposed to the medical profession.


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boywonder
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23 Apr 2013, 10:14 pm

animalcrackers wrote:

Am I sort of understanding what you meant?


I guess. An example would be say if struggling native peoples were given special privileges, but they complained if say those with only 1/16 or 1/32 or whatever smaller percentage native blood, received those same attentions and privileges too

I think Callista once said a happy LFA in a loving family may in fact be better off than a lonely unhappy HFA

Many HFA do struggle, as they're shortcomings are minimised due to apparently good outward function.

Many people say to me 'you dont have aspergers!' whereas a more obvious aspie would elicit some sympathy, instead of derision, as in my case.

Not being recognised as autistic by the wider public means no sympathy. The invisibility makes it harder as everyone expects you to be normal.

In some ways, lower functioning aspies have it easier, from others at least who may cut you some slack