About wanting a diagnosis without requiring real assistance

Post Reply New Topic

Yes but the diagnosis itself, independant of the discrimination, isn't assistance. If you were in an environment that lacked discrimination, diagnosis would be irrelevant.



Because it's damned serious business that has many people in a very, very bad situation and it takes up a very limited amount of resources for dealing with those problems. If you're facing serious discrimination that's badly crippling you in employment and personal relations to the degree they could be described as dysfunctional, that's one thing. If it's just a "nobody understands me" angst, and there isn't any serious dysfunction in any aspect of life at all, then it seems like vanity. Quite literally - from its root word "vain" which carries a double meaning of pointless and narcissistic.

You are the one who suggested that it was assistance. I said I sought diagnosis primarily because my difficulties led other people to treat me poorly. You then said "you sought assistance for discrimination." Your words, not mine.

I said that it doesn't matter one's reason for seeking diagnosis, if they end up with a diagnosis in the end. I have many impairments, but I've been learning to cope with those difficulties my whole life, so I didn't feel the need to be diagnosed because I am coping on my own. However, those impairments led to extreme difficulties in my interpersonal impairments, and that was something I felt diagnosis could help me combat - yes, through understanding.

What I'm saying is that it doesn't matter if I sought diagnosis for physical difficulties or emotional difficulties...it matters that I RECEIVED a diagnosis, which validates my reasoning, no matter what.

P.S. I'm in the U.S. and paid out-of-pocket for my diagnosis. I didn't take resources from anyone. Then again, like I said, if someone qualifies for and receives a diagnosis, then they deserve that diagnosis. Don't blame limited government funds on people who are differently impaired than yourself.

Last edited by fragileclover on 05 May 2012, 3:41 pm, edited 1 time in total.

I've read a number of threads since I joined WP that seem to debate what "impairment" should signify when it comes to Autism/Aspergers. In the DSM IV the term "Clinical Impairment" was used to try and delineate a stricter diagnostic criteria for Aspergers in order to cut back on the perceived number of false positive diagnoses. However, the term "clinical impairment" was never clearly defined, which seems to be the crux of many debates that I've been seeing in the threads.

This lack of clarity is one of the main reasons for the proposed changes to the DSM V regarding merging Aspergers into the Autism diagnosis. I personally support this, but I understand that not everybody does.

My doctor believes that Aspergers is highly over-diagnosed, with many false positives and that the media is partly responsible for this by overly portraying autistic people as fascinating savants. My personal stance is that as a HFA, I have been a little surprised by some of the self-descriptions that I have read of Aspergers. I understand that autism is a spectrum, but from my place on the spectrum some of the descriptions seem pretty far away and hard to relate to.

I believe that anyone who wishes should see a doctor to be evaluated. However, I also believe that the diagnostic criteria should be a little clearer to prevent false positives and I think the DSM V will help with that.

Article for reference on some of my points:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2691167/

Then they have determined you're dysfunctional (whether you agree or not).

Physical/emotional is not a meaningful distinction, true, but that doesn't mean the syndrome exists to satisfy emotional needs - it exists to overcome dysfunctions. It doesn't have any other purpose. Like I said before, it's only a shopping list of dysfunctions and suggested approaches to managing them. That's it. It's not who you are. You aren't a syndrome. The syndrome just describes a set of qualities shared by a group of people which impair them in life. It doesn't define anyone.



It's still a limited resource, the market doesn't change that. More demand means higher costs, that's the mechanism to restrict supply.

I accept and acknowledge that I'm impaired/dysfunctional. Obviously, or I wouldn't have a diagnosis. That was never my argument.

My argument was that I've never sought assistance for my AS, and to other people's standards, that means I shouldn't have sought a diagnosis to begin with.

I don't understand how people who think that ASD is a personality type and have no impairments caused by ASD can be diagnosed with ASD at all. Is this an imaginary population that we are talking about, or do these people ackshuly eggsist?

A person can seek a diagnosis of ASD for any reason, but a person can only be diagnosed with ASD if a person has impairments in functioning caused by ASD.

In my opinion, if you are an autistic person living in a non-autistic world, then you will have impairments in functioning, and your impairments in social functioning will not be mild, because it is the autism itself that disallows social functioning in the typical ways at the typical levels.

I totally agree with you. Impairments are a requirement for diagnosis, and if someone considers it 'only a personality difference,' then they are likely not very impaired.

However, that isn't what is being debated here. The OP brought up the fact that people who cite reasons like self-understanding or seeking understanding from others as a reason for diagnosis are told that those are not 'good enough' reasons to seek diagnosis, and that one should only seek diagnosis I they require assistance in order to cope.

My argument is that reasoning shouldn't matter, so long as one is found to be diagnosable.

For some people, the way you are treated because of your impairments is far more difficult than dealing with the actual impairments. If I could sit in a room by myself all day, with a temperature, light level and sound level of my choosing, and have access to my special interest, I wouldn't feel impaired at all. It's throwing other people an environments in the mix that bring about my impairments, so why can't I seek diagnosis so that I can better deal with those people? I already know what my impairments are, so I don't need to seek diagnosis for that particular reason.

...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 agree with most everything you're saying. I don't think this argument came from you...it was a mixture of responses.

The overall point that the OP made is absolutely true and observable here on WP, though. People are discouraged from seeking a diagnosis if they are doing so 'to know.' They are made to feel that their experiences aren't valid, because surely if one has AS, they would be seeking diagnosis in order to attain assistance. This is a very common view that I've seen on here.

I certainly understand the reason behind not wanting to consider Asperger's a 'personality difference,' because you're right, there's already enough difficulty with having it accepted by society as a whole. My question is, shouldn't diagnosis be encouraged to a degree to combat this? If someone is undiagnosed, and they believe they have AS, but aren't actually impaired in any way (i.e. undiagnosable), would you prefer they remain self-diagnosed and project that image of AS to the world, or would you rather they go for an assessment, where they will likely be told they do NOT have AS?

It just baffles me that it's of anyone's concern the WHY behind seeking a diagnosis. The same people on here against self-diagnosis are probably the same ones who are against seeking a diagnosis if you don't need assistance. You can't have it both ways, and it's not fair to measure someone else's experiences against your own.

Those of us whose impairments are less severe or noticeable have our own unique set of difficulties. While our impairments may be manageable and we are able to develop coping strategies, the problems arise when too much is expected of us (due to our outward appearing 'normalcy'), and we fail to meet expectations. Classic case of expectations surpassing ability. If someone is seeking diagnosis in order 'to know', they are likely adults who have spent their whole lives developing methods to cope. We manage to do this, until circumstances are introduced that we don't have coping mechanisms for (i.e. finding full-time employment, having successful relationships, taking on adult responsibilities). However, since we have always seemed relatively 'normal' in our ability to function, people have high expectations of what we can accomplish. Our biggest problems, then, are not our shortcomings, but how people treat and interact with us, based on the misconceptions these discrepancies create.

It's tough enough to be met with doubt and derision in our real-life relationships...but when someone comes to this board to find support, and are told not to bother with diagnosis because their reasons aren't 'good enough,' it makes things worse.

We are hardly experts on ourselves. Lets not pretend to be experts on others!

(None of this is directed at you, specifically. Just speaking generally).

I know this is hard to grasp because we all consider ourselves our own baseline, and of course, people like us don't recognize social obligations as natural.

But, in the work world, what you're talking about is referred to as a "job accomodation" and it's for disabled people. It works the same in the rest of life. Wanting to be granted exemptions from normal expectations IS asking for assistance. I know it doesn't seem that way, just wanting to be left alone doesn't seem like you're demanding anything from anyone. But that's how it is, if you're living in society. Because you want to enjoy partial benefits of society (like electricity), but you don't want to participate in the usual manner. You are, actually, asking for assistance from everyone around you.

Your point is well made, and I completely understand and agree with what you're saying.

However, based on what you've said, asking people for understanding is a way of asking for assistance. If that's the case, then why are there people on this board (and this thread) saying that 'understanding' is not a reason for diagnosis? That's what I'm having the most trouble with.

Is this all just semantics? I'd love to think so, but I doubt it. 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. 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.

How I've been seeing most of that is "If you don't have impairments then you don't have Asperger's, its not just a personality" not quite what you're saying. I'll agree that it happens some, but I've actually seen far less than people saying that Asperger's can't be a disability. Both extremes are problematic and have people doing them though. I try to respond to both sides with the fact that its a disorder that is often, but not always a disability.

I do however completely understand that view specifically because I view everything positive given to someone autistic which is not given to an NT as assistance. From what you've said I'd classify you have gotten assistance.



I actually was mostly trying to explain why people will do that, not state that I personally have an issue with it. Personally, what I care about is the language people use. If someone wants to pursue a diagnosis I'll give them information about my diagnosis process, and not tell them that they shouldn't. If someone says that they have Asperger's and its just a difference and how they don't need help so nobody with that diagnosis should need help, it will bother me, whether or not they are diagnosed. If someone says that Asperger's is only a difference it will bother me. If someone says that personally their Asperger's isn't a disability, I'll support them if others question them. The precision and accuracy of language are very important to me as are people not making statements about others.



I don't think the issues are with why they're seeking a diagnosis, I think its about how they're discussing it. At least, that's what makes sense to me. "I want a diagnosis to describe me, but I don't need any help" is very different than "I'm pursuing a diagnosis to see whether this actually describes me, because the difficulties describe me despite me having found a job and been in a relationship." It's about how others perceive those statements to me - the former seems to deny the difficulties, which reinforces society's view of Asperger's just being a personality type.

(I've seen people post threads in each of those styles and they get very different responses.)



I think you very much underestimate the amount those difficulties aren't unique to the people you're referring to. I know someone who will go for long periods of time without speaking (a few months?), who when she speaks will repeat the same word over and over (which isn't actually quite what she's trying to say but a related concept), and then will be told how amazingly verbal and articulate she is. The fact that she has a dog stop her from walking into traffic and she is solidly a case of classic autism doesn't stop people doing exactly what you're seeming to refer to to her.

I know people put up a thread and asked whether people tended to have people underrate or overrate what you can do, and it didn't matter how "severe" or how visible the impairments were, overall the issue was people having too high of expectations for what said individual can do.

(As someone who deals with both too high of expectations and too low of expectations, both are very problematic and very frustrating, but the too high of expectations are far more common. Sooner or later I'm going to snap at someone when they say I must be able to do things which will give me migraines.)



I'll agree with this, with the explicit note that this happens on both sides and I completely think both sides are wrong. People being told they need to be more visibly impaired is a problem. People told they can't be as impaired as they are is a problem. I tend to focus on the latter part mostly because such a high proportion of the people focus on the former.

I have seen several posters on this forum describe Asperger's Syndrome as a "personality type" and compare its inclusion in the DSM with the inclusion of "homosexuality" in previous DSMs. I have also seen posters on this forum say that Asperger's Syndrome is not impairing. I have seen posters say that it's just a different way of thinking and not a disorder at all.

If people want a diagnosis for the purposes of an identity label and not because they have actual problems, I am rather against that. I don't think there's much purpose to getting a diagnosis when one is not truly impaired.

I realize that people may be more impaired than they realize, and investigating is fine, but if you're not impaired, there's nothing wrong with claiming to be culturally autistic or broad autistic phenotype (BAP) or some other description that makes it clear that one has a particular variety of thinking style without also claiming to have a disorder.

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.

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.



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.

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.