About wanting a diagnosis without requiring real assistance

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05 May 2012, 11:50 pm

I do not like the confusion between AS and introversion and between AS and nerdiness that I sometimes see here. There seems to be the occasional confusion between AS and misanthropy too. I feel that people who consider AS to be an eggstreme of introversion, nerdiness, or misanthropy do not have AS. Otherwise, they would know that AS is not introversion, nerdiness, or misanthropy.

Joker
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05 May 2012, 11:52 pm

Verdandi wrote:

Joker wrote:

I can never agree with people that give themself a self diagnosis. Having some like Autism being confirmed by a professional some one that knows for a fact if a person does in fact have AS or Autism is the only one qualifed to make a diagnosis.

This ground has been covered numerous times. A search for self-diagnosis on this forum should find past discussions.

Still though I have read this issues being covered numerous times but I will still go back to what I have stated. I mean you can't give yourself a self-diagnosis of aids or HIV unless tested for it how else would you know if you had it?

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06 May 2012, 12:03 am

edgewaters wrote:

fragileclover wrote:

While what you've said makes great sense, there are those who believe that diagnosis should only be used as a means to attain some form of tangible assistance, and that's the problem.

What problem does it cause? If they need no assistance (tangible or otherwise), there is no problem that a diagnosis could possibly address.

The assistance doesn't have to be tangible, but the problem does.

Quote:

Anyone should be free to seek a diagnosis for any reason they see fit; as the reason doesn't make anyone more or less autistic.

Thats like saying anyone should be able to check in to ER to see if they have a broken leg whenever they see fit. It doesn't work like that. It's a waste of limited resources (and it doesn't matter whether it happens on the free market or not, the resources are still limited, and need to be directed to where they're needed).

Diagnosis itself doesn't make anyone more or less autistic either. You don't need a diagnosis to identify with it. This is MEDICAL. It's a diagnosis. A diagnosis - any diagnosis - is part of a treatment. It has no other function.

That treatment can be as simple as a vehicle for exemptions (such as in your case), to much more hands-on stuff, but it's still something that's addressing a tangible problem.

This comparison only works if the person has reason to believe that their leg is broken. If they have reason to believe their leg is broken, because either they fell or injured themselves, or are experiencing pain and difficulty/inability to walk, then OF COURSE they have a reason to go to the ER. are you saying there are people who just seek a diagnosis of AS for the hell of it? Like, they are sitting around bored one day and say, 'hell, why not shell out $1,500 today to see if I have an autistic disorder'? That's the only way your comparison could possibly work. People seek an AS diagnosis because they believe they have AS. Period.

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06 May 2012, 12:05 am

btbnnyr wrote:

I agree with this. I admit, I am extremely introverted, and I am a nerd, but when I think of being autistic, it's more about how difficult socializing is, how overwhelming sensory input can be, how fixated on my interests I can become, and so on.

Joker wrote:

There is no comparison between being HIV-positive and having autism. You need a blood test to discover the presence of HIV antibodies. However, if you have AIDS, you will know that something is wrong because it will manifest with a set of symptoms. You may mistake it for something else (like the flu) but over time, you will likely realize you have something more serious and seek a diagnosis.

Autism is diagnosed through behavioral observation, and unlike the antibody makeup in one's own blood, people can sometimes observe their own behavior, or others can point things out to them. I was able to determine I was on the autistic spectrum by speaking to autistic people, observing my own behavior, reading the writings of various autistic people on this forum, in books, in blogs, and so on. I was officially diagnosed four months after I self-diagnosed. So yes, people can at least sometimes determine that they are autistic. If it was as you said, I never would have been able to come to that conclusion without professional intervention.

You are entitled to your own opinion, but you are not entitled to your own facts. Your opinion may be that a professional is required to determine that one is truly autistic. However, factually speaking, there are numerous people on this forum alone who determined they were on the spectrum and later had that determination (self-diagnosis) confirmed by a professional. Your opinion lacks a factual basis.

Self-diagnosis is also not particularly relevant to this thread, as it is about seeking professional diagnosis and the motivations for doing so. The reason I mentioned self-diagnosis was because fragile_clover said that the people who hold a particular opinion that I happen to hold must also be the same people who oppose self-diagnosis.

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06 May 2012, 12:06 am

fragileclover wrote:

edgewaters wrote:

fragileclover wrote:

While what you've said makes great sense, there are those who believe that diagnosis should only be used as a means to attain some form of tangible assistance, and that's the problem.

Quote:

Anyone should be free to seek a diagnosis for any reason they see fit; as the reason doesn't make anyone more or less autistic.

If people want to get a diagnosis to see if they have AS or autism in general that is fine I see nothing wrong with it but a lot of peopel who are really depressed some times do not have AS or Autism they are just depressed.

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06 May 2012, 12:09 am

fragileclover wrote:

But people on this forum say that seeking a diagnosis when one isn't impaired is fine and reasonable, and if one isn't impaired one simply does not meet the criteria for AS, and thus does not have AS.

In one thread I started recently, at least one person involved in that thread insisted that there is very likely a large population of undiagnosed adults with AS who are simply not impaired and that we cannot determine what employment rates for autistic people are without including these unimpaired people in the total numbers, even though someone who is unimpaired doesn't have a disorder.

Last edited by Verdandi on 06 May 2012, 12:13 am, edited 1 time in total.

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06 May 2012, 12:11 am

fragileclover wrote:

Yes, because they have a problem and they need help.

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06 May 2012, 3:53 am

Rebel_Nowe wrote:

I find the idea that needing assistance is crucial to the decision to be diagnosed to be unfair to those of us who learned to seriously cope at a time in their lives when diagnosis was not a possibility. I don't think (short of future, serious college grad/post grad work I may need extra time for) that I will ever need more real assistance than my wife can provide. However, an official diagnosis could help me a sometimes. For one, people would believe me and understand when stress and social issues do arise, when people refuse to accept how draining a normal day at work can be, etc.

Absolutely!
I didn't think I was adversely affected by anything within me, until I was first pointed towards Asperger's at the age of 45. Since then I've begun to realise just how badly I have been adversely effected by it.
I'm hopefully banging my head against less (figurative) walls now, and am beginning to think I may well benefit from some of the available help after all.

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06 May 2012, 4:20 am

Verdandi wrote:

fragileclover wrote:

But people on this forum say that seeking a diagnosis when one isn't impaired is fine and reasonable, and if one isn't impaired one simply does not meet the criteria for AS, and thus does not have AS.

In one thread I started recently, at least one person involved in that thread insisted that there is very likely a large population of undiagnosed adults with AS who are simply not impaired and that we cannot determine what employment rates for autistic people are without including these unimpaired people in the total numbers, even though someone who is unimpaired doesn't have a disorder.

Oh. It seems odd to me that someone would even end up here on WP if they didn't have some impairments. I'm definitely not behind diagnosis of a 'personality type.' Again, there are people here who have impairments, who might like to call AS a difference, perhaps as a source of self-esteem or just liking to put a positive spin on things...but if there are people claiming that AS doesn't cause any impairments, well, those people clearly don't have AS.

Hopefully, the person in that thread chose their wording poorly, and they simply meant that there may be a population of undiagnosed adults who aren't OBVIOUSLY impaired. This is totally plausible. If they truly meant not impaired at all, they have no idea what they are talking about. No one can argue that impairments are an absolute requirement for diagnosis.

Maybe some of this does come down to semantics. It's easy to say one thing and mean another. I want to make it clear that I don't support the absurd idea that AS is simply a personality type that causes differences, not impairments. However, maybe we need to make it a point here on WP to clarify what people mean when they say: "I'm seeking a diagnosis because I want to understand myself better." Some might immediately read this as, "I have an odd personality, and want some sort of validation or excuse for it." It's very possible, though, that the person is impaired, but is primarily motivated by a lack of understanding of those impairments.

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06 May 2012, 4:36 am

Verdandi wrote:

I am not against self-diagnosis at all and have argued many times as to why self-diagnosis is not a bad thing, but I feel that the above items I mention tend to be fairly trivializing and the tendency for this topic to come up is one reason I don't participate as much here as I used to. I don't mind people saying "I relate more to autistic people than I do to neurotypicals" or even "I relate more to Aspies," or whatever. But when they try to use their own personal experiences to define what AS is or should be, that tends to leave those of us who have serious impairments and are diagnosed with AS out of their definitions, and frequently leaves me wondering if I should have been diagnosed with autism instead.

Yes, I understand. I don't like sweeping generalities when it comes to the autism spectrum. For instance, I see some people make claims that "people with AS don't have a lack of empathy...in fact, they are too empathetic!" -- while I believe that statement is true for a portion of people with AS (myself included), there are just as many people with AS who agree with the notion that Aspies are under empathetic. People tend to grab onto things that relate to them, and then measure everyone else against those things. I see this go both ways - milder cases discrediting the more severe cases, and the more severe cases discrediting the mild cases. This is why, in theory, I'm behind the DSM-V changes. For people with varying degrees of impairments to have the same diagnosis, it's no wonder the AS diagnosis meets so much scrutiny from the general public. Most disorders are a bit more uniform in their presentation, but I think how AS 'looks' is more affected by secondary symptoms, like sensory issues, which aren't part of the diagnosis. I mean, it makes the difference between one person being able to drive, go grocery shopping, etc, and another being stuck in their home most of the time.

I think, when comparing ourselves to one another, we have to remember the symptoms that are in the DSM...the symptoms that landed us this diagnosis, because comparing anything else is futile.

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06 May 2012, 4:44 am

Rebel_Nowe wrote:

CocoNuts
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06 May 2012, 11:05 am

Tuttle wrote:

...I think this entire argument is from people misinterpreting what I said.

I never said that everyone needs to have assistance to be impaired. I actually explicitly stated that its not necessary.

What I said is that the reason that people will have issues with people wanting a diagnosis without wanting assistance is because impairment is necessary and a majority of people who are impaired would greatly benefit from assistance. I never said that if you wouldn't benefit from assistance you are not impaired.

Everyone with an ASD has a disorder. Not everyone with an ASD is disabled by it, though most of us are disabled.

What I did say is that someone pursuing a diagnosis should ask themselves that where their impairments are, especially if they are not wanting assistance. I also tried to say that because society has been pushing for a view of Asperger's that isn't a disorder, but is instead only a difference, then people wanting a diagnosis when they're speaking as if it is not a disorder for them, will have people take offense. The fact that some of us have to regularly deal with people trying to discredit our diagnoses and our challenges because we were given the label of "Asperger's" instead of "Autistic" and its been being popularized to the socially awkward geek, means that to some of us, people discussing Asperger's as not having impairments is very frustrating. While someone who doesn't want help yet does have impairments can still be diagnosable, the focus on not wanting help and about how they don't need it, will make people be bothered by the fact that those statements make others minimize what they are dealing with personally.

The OP has already seemed to me to say that their view of assistance was different than those of us who were trying to describe this point of view. I don't think that part has any reason to be argued about for the OP (though if people want to continue discussing it, then that'd be reasonable).

I don't actually have a very specific idea of what other people mean by "requiring assistance", and I'm not uninterested in hearing other people's opinions. My idea of it includes psychotherapy, accomodations at school/work, assistance with executive functioning...
I just think I don't require any of that because at the moment I don't live alone but I don't live with my parents with whom I have troubles, I don't need to make any particular effort in socializing since I get more than sufficient interaction from my boyfriend, I don't drive, I don't have a job because I still go to school. I don't know if/what I could get as accomodation in other more stressful situations, or about my not-romantic relationships which aren't going very well, but at the moment I'm ok with not having friends, not talking much with my family etc.

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06 May 2012, 1:56 pm

Before my diagnostic evaluation, the most important thing that was asked was what impairments I had and what help I needed to work around those impairments so I would be able to do what I wanted to do in life. It was only after I mentioned what impairments I had and what I help I needed for those impairments that the evaluation continued with the DSM and the tests and the childhood history, etc etc etc. Otherwise, there was no reason for the evaluation to continue and no reason for the diagnosis to be made.

For eggsample, I said that I could not be in a lab for many hours a day in graduate school or at a research position without suffering sensory overload, brain shutdown, drop in cognitive functioning, drop in communication, drop in basic skills, and long-term burnout. The recommended accommodation was that I be allowed to work a flexible schedule of going into lab to do eggsperiments, then GTFOing to maintain the ability to go back to lab to do more eggsperiments and continue to function as a student or researcher.

Another eggsample, I said that I could not attend meetings without suffering sensory overload blah blah blah, see above. The recommended accommodation was that I not attend regularly scheduled meetings with many people and without purpose for me, but only critical meetings with few people and real purpose. Since then, I have figured out that I can ackshuly attend regular meetings, as long as I get to do a repetitive activity like play Bejeweled Blitz on my iPad and not have to look like I am paying attention but ackshuly paying attention. I can't understand what people are saying while trying to maintain the appearance of paying attention and looking at them, but I can understand what people are saying while doing a repetitive activity and not looking at them. My impairment is that I can't listen or process speech for an hour while appearing typical without significant negative consequences in both short-term and long-term, and my accommodation is that I get to do whatever I need to listen and process speech while appearing atypical. But it was still recommended that meetings be limited in number.

For someone seeking a diagnosis, I think that it is a good idear to make a list of your impairments that are preventing you from doing what you want to do like work or go to school, then figuring out or asking the psych about what accommodations you need and could get for those impairments. It was my therapist who helped me identify the accommodations. I sucked at doing that myself, ackshuly.

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06 May 2012, 2:23 pm

CocoNuts wrote:

I read many times on here that if one doesn't require anything practical from it, one should't seek a diagnosis.
I don't quite understand why. If one meets the diagnostic criteria for an ASD and it does cause problems in their lives, it should mean they have it, even if they don't require assistance, but if they don't get tested properly it makes everithing so arbitrary...
I don't believe in self-diagnosis, especially regarding psychiatric/psychological conditions, but I need to know if I have an ASD, or anything else for that matter. It's true it wouldn't help with my social life - because I'm quite comfortable with it as it is at the moment - and other issues, and I wouldn't even get any more self-awareness because I've analyzed myself a lot in order to establish the concrete possibility of having something "wrong" with me, but I know that knowing would definitely improve my self-esteem. Other than that, I have issues with my parents telling me that I don't care about them, that I'm very self-centered and that I'm weak, and that is really mining my emotional stability right now because I can't explain why I don't work in the same way as them and saying "You're hurting me" apparently just makes things worse.
So I think I'm going to seek a diagnosis, more in order to avoid falling into depression than for getting concrete help. I'm just curious as to why some people think it's wrong

My reasons for deciding to not go for an official diagnosis are (1) the expense of what is required to get the diagnosis and (2) in the US, medical insurance can become problematic and/or more expensive once diagnosed, (3) there are no prescriptions drugs or procedures that I currently seem need and (4) at my age, why bother?. Should I find I need something that requires an prescription and/or US medical insurance companies find a way to extract their collective craniums from whence currently lodged, I may change my mind some day, but until then if it walks like a duck and quacks like a duck, it is likely a duck.

for me, just the realization that there is a logical root cause was a relief, and exploring this, I'm discovering/rediscovering things to help me cope.

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06 May 2012, 2:28 pm

btbnnyr wrote:

Doodling also works beautifully for meetings -- repetative, not looking at other participants, but with the added benefit that you look like you're taking notes

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06 May 2012, 3:03 pm

CuriousKitten wrote:

Doodling also works beautifully for meetings -- repetative, not looking at other participants, but with the added benefit that you look like you're taking notes

Doodling is what I do during meetings in which I am actively participating. Like I could be running the meeting, doing most of the speaking, and openly doodling without pretending to do anything else, while not looking at people when I am speaking or when they are speaking. This works for me during the meeting, but I still have difficulty doing anything intellectually demanding for the rest of the day. Ackshuly, I really can't, so I just give myself the day off afterwards.

For meetings with twenty people and without me giving the presentation, doodling doesn't do it for me. I have tried it, and it doesn't work. The impairment is too severe for this coping mechanism to work. I can't pretend any typical behaviors during meetings. I need to engage in highly atypical, socially inappropriate behaviors to make it through. I have to sit in a corner away from the table where eberryone else is sitting, and I have to do a highly repetitive, highly engaging activity like playing a computer game, and I have to eggspend zero brain resources to reciprocate anyone in any way, because all of my brain resources are used up for speech processing and handling the presence of a group of people. Otherwise, I cannot understand what anyone is saying after minutes, and my brain shuts down for the rest of the day, not like I can't do anything intellectual, but more like I can't do anything basic either.

I think that this doodling + pretending thing is an eggsample of being able to function within typical bounds while using a coping mechanism vs. being and/or becoming unable to function at work or school without an obvious accommodation for an impairment. It took me quite awhile to even figure out that I could attend meetings while behaving this way. I am really glad that I figured this out, because this is another thing that I know that I can do now, and me not being able to do this is no longer going to stand in my way at work or school.

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