Asperger's--Underdiagnosed or Overdiagnosed?

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IceCreamGirl
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09 Jan 2011, 11:20 am

There are kids who aren't diagnosed even though they have meltdowns and social issues, and kids who are diagnosed even though they have perfect conversation skills and always know social rules.



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09 Jan 2011, 11:30 am

I don't know if it's Asperger's per se that is overdiagnosed, but behavioral issues themselves are overdiagnosed. I think this is a symptom of a culture where it's always someone else's fault. Blame all your problems on something...might as well blame your kids problems on some behavioral condition that might not even exist in your kid, (or if at all) instead of your lack of parenting skills. God forbid you go out somewhere and your kid embarrasses himself...which would embarrass you as a parent, since your kid is an extension of you. Children have to succeed for the sake of the parents. So now Asperger's gets thrown into the mix, and I would say overdiagnosed, only because there is a rush to diagnose kids with something, not so much because of any lack of accuracy. Everyone has SOME AS traits. After all, if your kid messed up in school, now it's the kids fault, it's the fault of Aspergers, it's the fault of school officials who aren't doing enough, anything but the parent's fault.



wavefreak58
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09 Jan 2011, 11:43 am

How about inexpertly diagnosed? A wrong diagnoses is can be as bad, or worse, than none at all.


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09 Jan 2011, 1:35 pm

I think it's a continuum. You may not fully meet DSM criteria but you can still be messed up because of the effects of it on other emotions: anxiety, depression, etc. I'm an introvert, I have abnormally intense obsessions, mega sensory issues, social/performing anxiety and multi-tasking problems. Whatever one wisshes to call it, it has messed up my life big time.



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09 Jan 2011, 1:55 pm

Kon wrote:
I think it's a continuum. You may not fully meet DSM criteria but you can still be messed up because of the effects of it on other emotions: anxiety, depression, etc. I'm an introvert, I have abnormally intense obsessions, mega sensory issues, social/performing anxiety and multi-tasking problems. Whatever one wisshes to call it, it has messed up my life big time.


Yes, excellent point. The standard criteria is outdated and rigid IMO. There are a lot of people who aren't typically Autistic, but have HUGE problems. For example, I'm an extrovert, but I was EXTREMELY emotionally immature when I was younger. I'd have had far fewer problems if I was a mature introvert!

As for overdiagnosis/underdiagnosis - the problem is that the 'experts' can't agree on what it is. I believe Autism will be re-defined at some point in the future - with less emphasis on the social reclusiveness aspect of it, and more emphasis on Autism as a condition of emotional underdevelopment (with social reclusiveness as a by-product). I suspect huge numbers of people have some degree of emotional underdevelopment - the question is how many have it to a degree which is disabling? IMO there are lots of people on WP who's Autism isn't really disabling, more a quirky personality thing.



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09 Jan 2011, 5:56 pm

Another_Alien wrote:
Kon wrote:
I think it's a continuum. You may not fully meet DSM criteria but you can still be messed up because of the effects of it on other emotions: anxiety, depression, etc. I'm an introvert, I have abnormally intense obsessions, mega sensory issues, social/performing anxiety and multi-tasking problems. Whatever one wisshes to call it, it has messed up my life big time.


Yes, excellent point. The standard criteria is outdated and rigid IMO. There are a lot of people who aren't typically Autistic, but have HUGE problems. For example, I'm an extrovert, but I was EXTREMELY emotionally immature when I was younger. I'd have had far fewer problems if I was a mature introvert!

As for overdiagnosis/underdiagnosis - the problem is that the 'experts' can't agree on what it is. I believe Autism will be re-defined at some point in the future - with less emphasis on the social reclusiveness aspect of it, and more emphasis on Autism as a condition of emotional underdevelopment (with social reclusiveness as a by-product). I suspect huge numbers of people have some degree of emotional underdevelopment - the question is how many have it to a degree which is disabling? IMO there are lots of people on WP who's Autism isn't really disabling, more a quirky personality thing.


This largely reflects my opinion on this issue. Looking at wairther the condition is under or over diagnosed is missing the point. "Autism" is just becoming a catch-all label for any genetic abnormality which effects social interaction. The underlying causes and traits vary wildly from person to person.



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09 Jan 2011, 6:17 pm

Another_Alien wrote:
IMO there are lots of people on WP who's Autism isn't really disabling, more a quirky personality thing.


How do you even measure level of disability? How many people on the spectrum can end as quirky but successful with proper intervention? Am I disabled because I have never succeeded professionally? Am I not disabled because I don't need special services to get by?


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09 Jan 2011, 6:32 pm

wavefreak58 wrote:
Am I disabled because I have never succeeded professionally? Am I not disabled because I don't need special services to get by?

It's hard to say. Because people that are disabled can succeed professionally after a lot of difficulty.

Sometimes I feel left out here because the majority have AS and are much more independent than me. I live at home, don't work, can barely cook and struggle to go shopping, have a friendly lunch with people and go to appointments.
Even simple everyday tasks seem to much.

And people to tell me to just deal with it will get a slap. I'm much more impaired by my autism than many with AS.


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09 Jan 2011, 6:38 pm

pensieve wrote:
wavefreak58 wrote:
Am I disabled because I have never succeeded professionally? Am I not disabled because I don't need special services to get by?

It's hard to say. Because people that are disabled can succeed professionally after a lot of difficulty.

Sometimes I feel left out here because the majority have AS and are much more independent than me. I live at home, don't work, can barely cook and struggle to go shopping, have a friendly lunch with people and go to appointments.
Even simple everyday tasks seem to much.


I do sometimes feel a bit left out when I see others talking about how they can live independently, work, keep up with obligations (and then suggest AS isn't a disability). I could have written the same post you just did (except I think I have AS). I don't think we have the same degree of impairment but we've ended up in similar circumstances, it seems.



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09 Jan 2011, 6:48 pm

pensieve wrote:
It's hard to say. Because people that are disabled can succeed professionally after a lot of difficulty.

Sometimes I feel left out here because the majority have AS and are much more independent than me. I live at home, don't work, can barely cook and struggle to go shopping, have a friendly lunch with people and go to appointments.
Even simple everyday tasks seem to much.

And people to tell me to just deal with it will get a slap. I'm much more impaired by my autism than many with AS.


I think this is the point. There is a huge range if impairment across multiple parts of personality, intelligence and a host of other things that define us as humans. I have zero impairment in communicating via written word. I have some impairment communicating spoken words, but not enough that anyone would notice in any conversation about fields of interest to me. I know it's there because I have to put in lot of effort to sustain a conversation. The more interesting it is the easier it is. I am definitely impaired when it comes to understanding basic social interactions. I have issues with executive function. I survive. I don't thrive.

On a deeper level, is society better off for me having never fulfilled my potential simply because I was not so impaired that I didn't need services that bore a direct cost? Now much of my productivity has been sucked up by my invisible impairments.

Where is the line between disabled and not? Who gets to draw that line?


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09 Jan 2011, 7:00 pm

wavefreak58 wrote:
Where is the line between disabled and not? Who gets to draw that line?


Medical professionals diagnose you on the basis that you present with impairments. This is somewhat subjective.

State and Federal services judge whether your disability meets their requirements for benefits. This is somewhat subjective.

Schools and employers judge whether your disability meets their requirements for accommodations. This is somewhat subjective.

They are also often not correct, and people who have impairments and need assistance don't get what they need.

But there is no line between disabled and not. There are simply shades of grey, different degrees of disability.



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09 Jan 2011, 7:37 pm

I don't know the answer to the question, but it makes me uncomfortable that autism has become such a pet issue these days. I mean, awareness is definitely good. But then I'm offended when I see a parent acting as if their child had just been diagnosed with terminal cancer when they have been diagnosed with autism.

I don't know where I fall on the "disabled" spectrum myself. On the one hand, I feel like I'm one of the more successful people because I'm in a relationship (even though he is the one and only friend I have) and I work (from home, for myself, on something that I'm very interested in). On the other hand, there seem to be a lot of people who are far better at communicating than I am, even in writing. Most people talk. I talk occasionally, but most of the time what's in my head just cannot be translated into spoken words. And I couldn't ever imagine myself with children. I fear I'd be arrested for child neglect. Even so, I never really considered myself to be disabled.



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09 Jan 2011, 7:45 pm

Another_Alien wrote:
[

As for overdiagnosis/underdiagnosis - the problem is that the 'experts' can't agree on what it is. I believe Autism will be re-defined at some point in the future - with less emphasis on the social reclusiveness aspect of it, and more emphasis on Autism as a condition of emotional underdevelopment (with social reclusiveness as a by-product).


We can't forget that the DSM III and IV (and probably the same with 5) were made according to the philosophy that disorders should be diagnosed according to their symptoms, and not by the supposed causes of the symptoms (like in DSM I and II).

Then, while this philosophy prevail, autism will already be defined by things like social reclusivness (or "social active-but-oddnes").



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09 Jan 2011, 7:51 pm

I didn't consider myself disabled until this year, I just figured I wasn't trying hard enough.

When I went to the state for assistance, I had it explained to me that as far as they're concerned I am unable to work and in desperate need of all kinds of assistance. To keep receiving my state disability benefits I am required to apply for Federal disability income (SSI/SSDI). I had already concluded I was disabled by that point, but I think I still underestimated how much.

I don't know that I am as disabled as the state says I am, but my work and education history is sort of telling.

Something I do not understand is why people resist the idea of disability. I have seen some explain that to them, disability is complete incapacity and that since they are able to do anything at all, they are not disabled. I don't find that this makes any sense at all, because it leaves no room for people like myself who are capable of many things and not capable of many other things. I have even had one person suggest that invisible* disabilities aren't worthy of state assistance because other people will assume they do not have a disability at all.

* I do not believe disabilities are truly "invisible." They may appear so because of the assumption that everyone is abled until proven otherwise, and because people will refuse to believe you have something they cannot see, even if they can see the effect it has on your behavior and life. Most of that will be ascribed to character flaws. So, not invisible, just misattributed.



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10 Jan 2011, 1:51 am

pensieve wrote:
It's hard to say. Because people that are disabled can succeed professionally after a lot of difficulty.


The only thing I have succeeded at is being the lowest paid person on each job I have ever worked. Not to mention being the one they love to pick on. AAt a resteraunt job I worked at the other employees said I should have been paid extra because all the joy I brought them when they all ganged up on me. :roll:

pensieve wrote:
Sometimes I feel left out here because the majority have AS and are much more independent than me. I live at home, don't work, can barely cook and struggle to go shopping, have a friendly lunch with people and go to appointments. Even simple everyday tasks seem to much.


I have worked jobs before that I got them through my brother, a friend, and by accident when I was about to be fired for being slow and nervous on another job for the company. The only reason I kept the job was because my mother woke me up to go to work and my father driving me to it. I have also had tons of jobs where I lasted a week or two where they canned me for being slow or forgetfull. I still live with my parents and they keep asking to rent the upstairs apartment for the past two decades but I know I would not be able to live alone and get myself ready for work or to work on my own.

pensieve wrote:
And people to tell me to just deal with it will get a slap. I'm much more impaired by my autism than many with AS.


I think it comes from the fact people with Aspergers speak so well. I come off as very intelligent at first so people assume that I am lazy or some kind of sociopath who is taking advantage of my parents. I also do not drive so I get a lot grief for it. I keep telling them that I will zone out which will cause me to rear end someone or god forbid kill a pedestrian. Some things I am really good at a few things but only appear good at most things, and yet some of the easier things in life I am a complete idiot at. :?


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10 Jan 2011, 9:33 am

Verdandi wrote:
I didn't consider myself disabled until this year, I just figured I wasn't trying hard enough.

That's exactly what it is for me. I've been blaming myself for everything my whole life. It's hard to let go of that.