About wanting a diagnosis without requiring real assistance

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CocoNuts
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04 May 2012, 12:50 pm

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 :?


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04 May 2012, 12:53 pm

Possibly they are thinking something along the lines of- Why do you need to define yourself with a label? (I am not saying I agree with that)


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04 May 2012, 1:01 pm

CocoNuts wrote:
I'm just curious as to why some people think it's wrong :?


Significant impairment is required for a diagnosis. If you don't need help, where is the significant impairment? (note: I do expect that some people who seek a diagnosis will be able to answer this based off of the fact that they got the opportunities they needed, however, that question is at the center of this question you're asking)

Asperger's isn't just a personality type, its a description for people who are dealing with a disorder. If someone has traits, then it's good for them to participate in the community even if they're not to the level of a disorder, but, even if some people don't want it to be, it is a disorder with significant impairments.

Some people have this affect them more personally because of the fact that people getting the diagnosis and saying they don't need help is affecting the view of society into saying that people with Asperger's aren't really disabled, they're just a bit different.



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04 May 2012, 1:07 pm

I'm going to tell you my opinion by quoting myself:

Quote:
I think that depends on what kind of person you are. I, for example, am a person who needs to know for sure. I want to know if a "professional" sees the same kind of traits in me as I do. Of course you could then say "getting a diagnosis doesn't mean it's for sure, the professional might be wrong". That's true, but getting someone else's view on the matter might help and if getting a diagnosis can ease the suffering even just a little bit, then I'd say it's worth it.

I've got a boyfriend, I've got a couple of close friends and I've got a job. Just because I have those things it doesn't mean life's easy for me. It takes an extreme amount of energy to keep my friendships alive. And when it comes to work, I feel terribly anxious every time I'm there because I need to do thing I'm rubbish at (talking to customers, multitask, be around loads of noise for hours and hours, look people in the eyes etc) and I get tired and annoyed so much easier than my colleagues. I want to learn how to handle that and how to handle my anxiety, aggression and social issues. So in my case I will seek assistance but I think the point I'm trying to make (sorry for the rant) is that just because one might be able to function (in a limited sort of way) in the NT world, one might not have an easy life. And even if you won't seek assistance seeing a psychologist might help. And if getting a proper diagnosis can help ease the pain, I don't see why that's a problem. Do you know what I mean?



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04 May 2012, 1:10 pm

Tuttle's right: You do have to have some sort of impairment, if only because it takes you a lot more cognitive work or because you have to do things a different way.

However, for some people who don't have that significant impairment, they are still very close to the spectrum, so much so that they have more in common with autistic people than with NTs. They can't be diagnosed, but there are terms for that group of people--"Subclinical autistic traits", "Broader autistic phenotype", or more colloquially, "Spectrum cousin". There are quite a few of them here on WP, and I think we need them because of how they can help as interpreters between full-blown autistics and full-blown NTs, and because even if they don't have any particular disability, they do have a lot of traits that are similar to ours and probably identify more with autistics than with the social-butterfly NT ideal. It's a lot like how you can have Deaf family members or friends, and speak ASL fluently, and be part of the Deaf community even though your hearing is unaffected. We certainly shouldn't isolate ourselves from people who don't have significant impairment.

I've been trying to popularize the term "Culturally autistic", which refers to those who are part of the autistic community and identify with the autistic way of thinking and relating to others--a group that includes diagnosable autistic people as well as those with similar disorders and those with no diagnosis at all. There's more to autism than the significant impairment that can get you a diagnosis--there's more to it than the medical perspective. There's also the autism community and the culture we've built up for ourselves. Having a way to say that would be handy.


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04 May 2012, 1:16 pm

There is also the issue of funding for diagnosis. In the UK, diagnosis via the NHS is usually only offered if the person experiences significant difficulties in their day to day life and needs access to additional support or services.



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04 May 2012, 1:21 pm

Callista wrote:
I've been trying to popularize the term "Culturally autistic", which refers to those who are part of the autistic community and identify with the autistic way of thinking and relating to others--a group that includes diagnosable autistic people as well as those with similar disorders and those with no diagnosis at all. There's more to autism than the significant impairment that can get you a diagnosis--there's more to it than the medical perspective. There's also the autism community and the culture we've built up for ourselves. Having a way to say that would be handy.


I really like this idea.I'm completely in agreement that people who aren't diagnosably autistic should be part of the community and we should embrace what they have to offer, while also specifying that people with the diagnosis are impaired and are usually disabled. I've gained quite a bit from people with similar disorders as well as those who are autistic and those who are possibly subclinical. The separation between "culturally autistic" and "diagnosably autistic" in language, while the explicit connection otherwise seems like it'll help both people who aren't diagnosed with autism and those who are.



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04 May 2012, 1:28 pm

Tuttle wrote:
CocoNuts wrote:
I'm just curious as to why some people think it's wrong :?


Significant impairment is required for a diagnosis. If you don't need help, where is the significant impairment? (note: I do expect that some people who seek a diagnosis will be able to answer this based off of the fact that they got the opportunities they needed, however, that question is at the center of this question you're asking)


Significant impairment does not have to imply that you need help. Anyone who look at me (professionals included) would say that I am significantly impaired since I have no social life apart from my wife, and can't establish peer relationships. But I do not need a lot of help really (except some minor things with exams...), since I am fine with it being this way. Even though I do not feel I have anything in common with my peers, and therefor do not mourn the fact that I can't socialize with them, professionals will still see this as part of the social impairment.

(I did not understand what you were trying to say in the last "note" part, I am sorry if that was related to my answer)

Tuttle wrote:
Callista wrote:
I've been trying to popularize the term "Culturally autistic", which refers to those who are part of the autistic community and identify with the autistic way of thinking and relating to others--a group that includes diagnosable autistic people as well as those with similar disorders and those with no diagnosis at all. There's more to autism than the significant impairment that can get you a diagnosis--there's more to it than the medical perspective. There's also the autism community and the culture we've built up for ourselves. Having a way to say that would be handy.


I really like this idea.I'm completely in agreement that people who aren't diagnosably autistic should be part of the community and we should embrace what they have to offer, while also specifying that people with the diagnosis are impaired and are usually disabled. I've gained quite a bit from people with similar disorders as well as those who are autistic and those who are possibly subclinical. The separation between "culturally autistic" and "diagnosably autistic" in language, while the explicit connection otherwise seems like it'll help both people who aren't diagnosed with autism and those who are.


I love it too!



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04 May 2012, 1:33 pm

A couple things I've seen people say as far as reasons not to get a diagnosis. One is that there are possible negatives to an official diagnosis. With a diagnosis, in certain situations you are required to reveal it, whereas if you aren't undiagnosed but think you have it, you don't. Also the difficulty and expense of getting a diagnosis is for many people a reason not to.


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04 May 2012, 1:42 pm

psychegots wrote:
(I did not understand what you were trying to say in the last "note" part, I am sorry if that was related to my answer)


I was saying that there will be people who are impaired who don't need help, because of the opportunities they were given. Someone who has particular needs for a job might have been given the chance to get a job that fit those needs despite that being only a small percentage of overall jobs. Someone who has major difficulty with peer relationships, might have happened to find someone who works with them despite that and might be in a relationship because of that (relationships are not necessary, yet a lot of people here want them and judge people's abilities partially based on that, I disagree with that being treated as important as it is between people being asexual and people having relationships while having rather strong social "defects" because the needs of the relationship don't fit what society expects.) There are other places people might have been given the opportunity to succeed even though they had the same impairments that prevented others from "succeeding".

Overall though, impairment is necessary, a majority of us will need help because of that impairment, and the people who don't need help should answer to themselves "how are you impaired if you don't need help?"

I do think it needs to be noted though, that needing help doesn't at all suggest that someone wants to change themselves or that someone isn't happy how they are.



CocoNuts
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04 May 2012, 1:47 pm

Yeah, my original point even if all confused was that I don't think that to have significant impairment you have to require assistance (like, someone following you around and telling you what the expression on the face of the people you're talking with means 8O). I know people who are on disability and don't really get any assistance or accomodation for their problems (apart from the money they get, which they don't really use for anything related to the disability since they like quite independently).
I think you can struggle with some things in which having an ASD diagnosis can help without having to have continuous assistance (even though I probably wouldn't have minded talking with a psychologist at some points of my life).


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Last edited by CocoNuts on 04 May 2012, 1:51 pm, edited 1 time in total.

psychegots
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04 May 2012, 1:47 pm

Ah, thank you for clearing that up for me. And I agree with what you are saying.



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04 May 2012, 1:55 pm

Tuttle wrote:

Quote:
Overall though, impairment is necessary, a majority of us will need help because of that impairment, and the people who don't need help should answer to themselves "how are you impaired if you don't need help?"

I do think it needs to be noted though, that needing help doesn't at all suggest that someone wants to change themselves or that someone isn't happy how they are.


This is very well articulated and one of the more thoughtful things I've read on this forum. Thank you for saying what I've been trying to figure out how to say, since I found WP a few weeks ago.


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04 May 2012, 1:59 pm

CocoNuts wrote:
Yeah, my original point even if all confused was that I don't think that to have significant impairment you have to require assistance (like, someone following you around and telling you what the expression on the face of the people you're talking with means 8O). I know people who are on disability and don't really get any assistance or accomodation for their problems (apart from the money they get, which they don't really use for anything related to the disability since they like quite independently).
I think you can struggle with some things in which having an ASD diagnosis can help without having to have continuous assistance (even though I probably wouldn't have minded talking with a psychologist at some points of my life).


Seeing a counselor who knows about ASDs is assistance, working with someone who teaches you about emotions is assistance, getting accommodations to help you in work or in school is assistance, having someone teach you to do something like drive focused on your challenges is assistance, occupational therapy to help with sensory problems is assistance, SSI/SSDI is assistance...

Not all assistance is having a PCA or such.



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04 May 2012, 2:08 pm

Yeah, definitely. I've never needed an aide and probably never will, but I get some pretty intensive assistance sometimes. It all depends on how much change and stress I've had to deal with lately.


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04 May 2012, 2:29 pm

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. My parents might be convinced that I'm not just a lazy idiot (no promises there, though >_>). Also, I hope to become an established and popular writer. I'm going to need a diagnoses to have a public image that isn't just a creeper.