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AspieUtah
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14 Feb 2018, 3:26 pm

AnnaOMalley wrote:
The problem with this is that you can’t diagnose yourself with autism. Someone may display autistic traits (e.g.: being socially awkward, having sensory issues, etc.), but causation doesn’t equal correlation. My roommate has sensory issues and tends to be introverted, but that’s as a result of Sensory Processing Disorder, not autism. I highly advise against calling yourself autistic unless you have an official diagnosis.

I amn't so sure. Humans refer frequently and seriously to themselves being depressed, anxious and obsessed, among other things, without ever gaining the advantage of receiving a diagnosis. The reality of self-prescribed over-the-counter pain medications leaves obvious diagnoses to the patients themselves in many circumstances.

Moreover, there is nothing inaccurate, incorrect or illegal for a human to state honestly that he or she has "been screened with having autism." I know of no "fake autism" police. When so many good screening tests abound on the Internet, such a statement might just be the only way for certain people with autism to describe themselves without extreme expense, arduous travel and the bane of clinicians who know little about how autism presents in adults and females in particular.

There is much about the professional autism diagnostic community that makes accomplishing an understanding of oneself distinctly difficult and out-of-reach. I wholeheartedly support screenings for those likely autists who need to know if only for their sense of self appreciation. If they then, make the statement that they have been screened with autism, who am I to care? I would applaud it, instead. Self discovery is a fantastic thing.


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15 Feb 2018, 2:28 am

I think that there is a difference between the self diagnosed who go all special interest on the subject (doing lots of research, joining forums, taking the online tests multiple times, and reading every book they can find) and those who feel a bit socially awkward and just post on facebook that they think they are autistic in the hope of getting a reaction.

I think if you have done enough research you can make yourself as knowledgeable (or sometimes more knowledgeable) as one of the professional who would make the diagnosis. I think if you have family members who have been diagnosed but cannot afford the cost yourself then you are probably going to be right about your self-diagnosis. Maybe if you have made a list of all your traits and how they relate to the diagnostic criteria (and maybe post it on a forum, like several people do here) then you are probably right about your self-diagnosis.

I was diagnosed by a private psychologist, but that was for my own peace of mind and is not legally recognised. I am currently thinking about going through the NHS to make it official. I think it would be good to have in medical records in case I ever ended up in hospital or something like that. I also think it would be nice to be a positive role model for other autistic children as I often work in schools. But then I wonder if I would qualify as I manage work and family, would they agree that I am at a level where I need support? I do need support, but I get a lot of it from certain people close to me, like my husband and my mum. And would I be wasting resources for those people who actually need it more? So I am undecided.


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naturalplastic
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15 Feb 2018, 7:07 am

The OP's exact turn of phrase about "type 1 vs type 2" is obviously something that he made up off the top of his head when he made the post. That exact phrase is not current. But that dichotomy between the self diagnosed and the officially diagnosed IS a thing in the autism community. He made up the terms to denote a thing that IS "a thing". Folks post about it constantly here on the General Autism subforum of Wrongplanet. I have seen self diagnosed folks complain about how the officially diagnosed sneer at them here. Others make a point of welcoming the self diagnosed (which I agree with, even though I think folks should get the real diagnosis if they can afford it).



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15 Feb 2018, 8:10 am

AnnaOMalley wrote:
The problem with this is that you can’t diagnose yourself with autism. ... .... ... I highly advise against calling yourself autistic unless you have an official diagnosis.


I think this viewpoint may err too much on the side of caution.

Some months ago a piece of research was given link in a posting on here. The findings were that a significant proportion of the researcher's sample who self diagnosed or strongly suspected they were on the spectrum subsequently were found to be on the spectrum when professionally assessed.

I have had occupied both positions. When I first subscribed to wrong planet I had a strong suspicion. I had received feedback from people who were well informed that from what they knew of me they too suspected I might be.

I had followed the route which other posters had cited, doing a lot of research, buying books, looking for televised lectures on YouTube, viewing a degree of personal stories keeping a few pinches of salt in reserve.

Like many in that research, when a way opened to have a professional assessment, the assessment confirmed my suspicion that my profile was autistic, with a spread of 15 out of 18 on the methodology used.

Amusingly a few weeks ago I was thinking I had been very silly getting this daft idea in my head I was autistic. Then on Sunday I was with my beloveds ib a very loud club setting, lots going on, sic all stuff without structure.... And over two hours before the end time I had hailed out, and my beloved observed later on it was not a problem, he could see exactly the state I was reaching.

I will observe I am in a fortunate place. Many factors have come together allowing me to work in an area where technical rather than social skill is more important, and where I have mostly avoided pressure points like loud and unstructured social occasions, to the point I had forgotten what a trial such things are.



AspieUtah
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15 Feb 2018, 8:44 am

Goth Fairy wrote:
I think that there is a difference between the self diagnosed who go all special interest on the subject (doing lots of research, joining forums, taking the online tests multiple times, and reading every book they can find) and those who feel a bit socially awkward and just post on facebook that they think they are autistic in the hope of getting a reaction....

Absolutely true. I was simply going bare minimum to show that people have the right to call themselves whatever they wish. I have always advocated doing more than one screening test. Personal inventories, reading research, understanding diagnostic criteria all come into play, hopefully.


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FallingDownMan
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15 Feb 2018, 12:24 pm

Maybe there should be a type 3? Those who want a formal diagnosis, but can't get one because they are older than 18 and there is no where local to get the testing as an adult, or simply can't afford to pay for the testing out of pocket.


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TallsUK
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15 Feb 2018, 5:15 pm

Whilst there are clearly some interesting discussions I think we are moving slightly away from my initial question.

I heard the description of type 1 v 2 at a lecture I was at recently. It was described by a top autistic professor who is responsible for work that people here really respect. He used the concept when talking about a group of 4 colleagues/friends of his and described one of them at type 2 (ie confident in identifying as autistic but not holding a diagnosis). One of the other people he mentioned was the founder of a certain forum not a million miles away from here.

Most of the concepts these people come up with will never be heard of again but some of them will become the core building blocks of our community. I thought it was an interesting idea and deserved further discussion. It is not something most people will have heard but I instantly recognised the concept behind it.

In theory, a diagnosis should be no more than a legal document. It means that you have met a criteria that means that the state should provide appropriate to your needs. Without this legal document you do not have access to this support. Of course we all know that the reality is very different and we can all tell shocking stories.

Personally, I am a believer that it is my mind and I don't really care what anyone has to say about it. I don't like the fact that I had to go through an annoying process in order to access support but I know that it is the legal requirement. Had someone pointed out that there wasn't any support I think I still would have wanted to go through with it just to be sure in my own mind though. If someone did not want to go through that process I would defend their right not to.

There are people that are confident that they could obtain this document but choose not to. I have a friend in that situation and I have never questioned it. I am now wondering if I am right not to question it. He is a great guy and would be a fantastic role model for anyone autistic or not. I think he would be a great person to show autistics in the very best light. So, should i encourage him to get a full diagnosis?



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15 Feb 2018, 6:11 pm

To address your original post, I don't think the idea of Type 1 or Type 2 Autism is very helpful. You are either autistic or not. Before I was diagnosed, I was certain I had Aspergers because I am somewhat stereotypical and had researched the condition exhaustively. The only thing that changed post diagnosis is that I now have a lengthy report saying I am autistic and confirmation of a lifelong disability. Clinicians do like inventing new labels and making things more complicated. I would be wary of anything that sounds like we may be equating ourselves with Diabetics, also, which some ignorant people might suggest.



naturalplastic
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15 Feb 2018, 6:31 pm

TallsUK wrote:
Whilst there are clearly some interesting discussions I think we are moving slightly away from my initial question.

I heard the description of type 1 v 2 at a lecture I was at recently. It was described by a top autistic professor who is responsible for work that people here really respect. He used the concept when talking about a group of 4 colleagues/friends of his and described one of them at type 2 (ie confident in identifying as autistic but not holding a diagnosis). One of the other people he mentioned was the founder of a certain forum not a million miles away from here.

Most of the concepts these people come up with will never be heard of again but some of them will become the core building blocks of our community. I thought it was an interesting idea and deserved further discussion. It is not something most people will have heard but I instantly recognised the concept behind it.

In theory, a diagnosis should be no more than a legal document. It means that you have met a criteria that means that the state should provide appropriate to your needs. Without this legal document you do not have access to this support. Of course we all know that the reality is very different and we can all tell shocking stories.

Personally, I am a believer that it is my mind and I don't really care what anyone has to say about it. I don't like the fact that I had to go through an annoying process in order to access support but I know that it is the legal requirement. Had someone pointed out that there wasn't any support I think I still would have wanted to go through with it just to be sure in my own mind though. If someone did not want to go through that process I would defend their right not to.

There are people that are confident that they could obtain this document but choose not to. I have a friend in that situation and I have never questioned it. I am now wondering if I am right not to question it. He is a great guy and would be a fantastic role model for anyone autistic or not. I think he would be a great person to show autistics in the very best light. So, should i encourage him to get a full diagnosis?

I guess I was wrong. You didn't make it up "off the top of your head". You actually heard this weird thing (that none of us has ever heard of before) about "types" from an authority figure. "A top autistic professor". Was this professor (a) professor WITH autism? Or an NT professor who specializes in autism? Or....is he both autistic and a specialist in autism? Lol!

And your type Two folks are people who are convinced that they have autism but hide it. That's kinda the opposite of the issue folks bicker about on WP. Here folks are upset about posers who claim to be autistic, but are not officially diagnosed.

you're asking if this supposedly existing ghost population of autistics who don't get diagnosed and don't acknowledge that they are autistic, but think that they are autistic increase the stigma against autism.

Hard to say. Most who do get diagnosed don't advertise that they are autistic. Though they do get counted in the medical community stats I suppose. And not all folks who are convinced that they ARE autistic, but don't get diagnosed really are autistic.

So its hard to say.



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15 Feb 2018, 6:36 pm

If I understand this correctly the difference is between people who have been diagnosed by a certified proffessional a those who strongly believe they are autistic sans diagnosis by a certified proffessional. To me the words “proffessionally diagnosed”, “self diagnosed”, and “self identified” more accurately describe what is being discussed than “Type 1” and “Type 2”


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naturalplastic
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15 Feb 2018, 7:16 pm

ASPartOfMe wrote:
If I understand this correctly the difference is between people who have been diagnosed by a certified proffessional a those who strongly believe they are autistic sans diagnosis by a certified proffessional. To me the words “proffessionally diagnosed”, “self diagnosed”, and “self identified” more accurately describe what is being discussed than “Type 1” and “Type 2”


This.



TallsUK
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16 Feb 2018, 6:52 am

naturalplastic wrote:
I guess I was wrong. You didn't make it up "off the top of your head". You actually heard this weird thing (that none of us has ever heard of before) about "types" from an authority figure. "A top autistic professor". Was this professor (a) professor WITH autism? Or an NT professor who specializes in autism? Or....is he both autistic and a specialist in autism? Lol!


He is an autistic individual that is now a very well respected professor in the field of autism.

naturalplastic wrote:
And your type Two folks are people who are convinced that they have autism but hide it. That's kinda the opposite of the issue folks bicker about on WP. Here folks are upset about posers who claim to be autistic, but are not officially diagnosed.

you're asking if this supposedly existing ghost population of autistics who don't get diagnosed and don't acknowledge that they are autistic, but think that they are autistic increase the stigma against autism.

Hard to say. Most who do get diagnosed don't advertise that they are autistic. Though they do get counted in the medical community stats I suppose. And not all folks who are convinced that they ARE autistic, but don't get diagnosed really are autistic.

So its hard to say.


Personally, I did not even feel comfortable reading the forums until I had a formal diagnosis.

You are right that I am describing a group of individuals that are not commonly recognised and they are very different from the one that say they are autistic and yet dont have a diagnosis.

If someone is fortunate enough to be able to pay for private support then a formal diagnosis is irrelevant. They can still get the same support. However, this group of people are therefore unknown to the wider world. This makes the autistic community smaller than it actually is and therefore easier for the NT community to ignore.

Secondly, I am fairly sure that I have been on the receiving end of discrimination at work (it is impossible to be sure though). I fully understand why successful professionals would not want a formal diagnosis. While some autistics people are successful individuals the research shows that many really struggle in work. However, I think that these successful professionals probably have a wide range of good strategies that the rest of us could really benefit from.

The extreme end of this group would be the various people of the top 10 richest people in the world list who everyone assumes are autistic although they have never actually said anything of the sort.

This is a challenging concept and there are no right and wrong answers but I had hoped for a interesting discussion.

Lets drop the type 1 v 2 bit as people are focusing on these labels far too much.



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17 Feb 2018, 1:45 pm

AnnaOMalley wrote:
The problem with this is that you can’t diagnose yourself with autism. Someone may display autistic traits (e.g.: being socially awkward, having sensory issues, etc.), but causation doesn’t equal correlation. My roommate has sensory issues and tends to be introverted, but that’s as a result of Sensory Processing Disorder, not autism. I highly advise against calling yourself autistic unless you have an official diagnosis.


Sorry I didn't mean to offend anyone. I won't post here anymore.



strings
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17 Feb 2018, 3:05 pm

leahbear wrote:
AnnaOMalley wrote:
The problem with this is that you can’t diagnose yourself with autism. Someone may display autistic traits (e.g.: being socially awkward, having sensory issues, etc.), but causation doesn’t equal correlation. My roommate has sensory issues and tends to be introverted, but that’s as a result of Sensory Processing Disorder, not autism. I highly advise against calling yourself autistic unless you have an official diagnosis.


Sorry I didn't mean to offend anyone. I won't post here anymore.


I don't think anyone here was offended, and there was certainly nothing remotely offensive in anything you wrote. Please stay; your posts contribute a lot.



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17 Feb 2018, 4:15 pm

Due to how autism is defined (as an umbrella term for who knows how many different genetic/epigenetic/environmentally influenced things and as a spectrum) there will always be people on both sides of the clinical dividing line between diagnosed and undiagnosed who have varying proportions of NT and ASD traits. You have NTs with small touches of autism, just like you have people who are profoundly affected. The dividing line is placed where medical people have decided that line should be. The guiding principle is whether or not you are affected adversely and if you are sufficiently affected. Then they stratify the people who are diagnosed into arbitrarily defined severity levels.

If you look at the discussion sections regarding the development of the category in the DSM and look at how the proverbial sausage is made, there are tons of places where there is disagreement. In addition, the people who make the actual diagnosis do not operate perfectly consistently with each other and maybe not with themselves. There is still Type I statistical error and Type II statistical error, where people are diagnosed incorrectly or incorrectly not diagnosed.

As far as the original question about whether or not ASD is stigmatized in some way because the pool of people who are diagnosed do not include various categories of undiagnosed people with higher abilities -- I don't see how you would even adjust for that or what the point would be. Even if you decided to move the line (which you might want to do anyway if you felt the current line was not getting help to enough people who needed it) how far would you move it? How would you get the slightly affected to care? If you were overzealous, would you end up diluting the diagnosis so much that no one would get any help?



strings
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17 Feb 2018, 7:22 pm

AnnaOMalley wrote:
The problem with this is that you can’t diagnose yourself with autism.


Hmmm...as a blanket statement that sounds a little dogmatic. As a legally valid diagnosis, entitling the person to benefits, accommodations in the workplace, etc., presumably it is true. Probably even a professionally-trained psychiatrist is not allowed, for the purpose of legal entitlements, to diagnose himself or herself as being autistic?

But if we are talking not about the legal status of the diagnosis, but rather about its accuracy as a statement of one's mental attributes, then it seems less clear cut. Medicine, especially when the mind is involved, is not an exact science. There will certainly be borderline cases where even medical professionals would disagree about whether someone qualifies as having an ASD or not. So in the end, it is really going to come down to a probability, somewhere between 0% and 100% but not always at one extreme end of the range or the other, as to whether a professional diagnosis of ASD is correct or not. Things are often not black and white.

Now, there will be different levels of probable accuracy of the diagnosis, depending upon who is performing the diagnosis, and on whom. But there is surely no way one can make such a blanket statement as that "one cannot diagnose one's own autism" (except, perhaps, in the sense of making a legally valid diagnosis). A psychiatric professional diagnosing themselves may achieve some rather high level of probable accuracy. A layman who has researched extensively may well achieve a quite high level of accuracy. A casual person who hasn't delved deeply into the subject may well make a rather unreliable diagnosis of themselves.

But I don't think self diagnosis based on detailed study and reading in the area should be dismissed as having no validity.