Critical of self diagnosis - you shouldn't be

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I am really glad we seem to have stopped talking about talking and started discussing the subject again.

Thinking about my original premise that people should not be critical of self diagnosis.
I think I was simply stating "live and let live"

When I used the words self diagnosis it was not meant to be scientifically rigorous and experimentally valid (As I have taken a lot of time to explain) It is an easy criticism if that is what is challenged. but it wasn`t that really.

It was much more loose. something like tall p said... I have spent a lifetime researching and pondering over this and I decide that I have Aspergers to a larger or smaller extent. No one else decides I decide and trusting my own abilities I trust my decision and anyone who opposes this without concrete evidence can take a flying leap.

No one can take my decision away I use my intellect to ensure that I do not lie or delude myself and if I still conclude I have an ASD then thats what I have.
I feel quite strongly about this that its nobodys business except mine and I do expect people to respect this as I respect their choices to call themselves what they want.
Its about feeling assertive about my own being it empowers me to take control of my own life.

Ok back to the discussions:

Starkid this is interesting stuff here

Hopefully rebbieh it is getting back on track now, but you were correct and that is why I have been trying to introduce positive points about users pushing the direction of research and having input to the next DSM or what ever the professors agree to do.

Also appealing for respect for peoples right to use the word diagnosis in perhaps a non-medical way like I attempted to do almost like "self discovery" I suppose...

in fact that might be a good way to put it? but more in a `traits I posses/behaviours I exhibit that I cannot explain in any other way` meaning; than meaning self discovery in a spiritual self discovery, religious enlightenment kind of way.
Almost like .... After years of confusion I finally discovered what I am actually like. I know this will not appeal to the scientific analysts types but it is not meant to it is a different frame of reference. Some things need to be described by fellings and not words, I suppose it takes the listener to make a cognitive or empathic leap to understand these feelings sometimes...... and I know for some of us that is tricky at times.

Last edited by Peejay on 01 Dec 2014, 1:37 pm, edited 3 times in total.

People can call themselves what they want, but as soon as they call themselves that in public, others can criticize the process by which they came to call themselves that, and others don't have to validate that process or accept the conclusions of a process that they think is invalid.

Equally btbnnyr people who discuss official diagnosis in public can have the process of official diagnosis itself criticised for example with some of the strong arguments mentioned above.

Exactly. It is the way I felt a few months ago, when, 2 of the posters (maybe there was 3, but if I remember correctly it was especially 2 of the posters) started attacking/invalidating every one of my statements, as I mentioned some of my autistic traits, and also some people I like and respect, etc, and I kept trying to express myself in different ways, but the demeaning comments about my comments/statements kept escalating (you might remember, you were there, and you helped me so much when it happened). For example after mentioning 1 or 2 of my "symptoms/traits", I was told "oh that doesn't mean you are autistic", and it was going on and on, as if I was a bubbling idiot who assumed she was autistic after reading one or two articles and because she would have 1 or 2 autistic traits (I have tons of them, and have struggled all my life, and realised I was autistic after doing research for my son, who is diagnosed with AS). The whole "conversation" (which felt a lot more like an attack and bullying than an actual discussion - and in fact the demeaning comments from these 2 posters was even carried on in other discussions/threads) was extremely distressing and exhausting.

People should remember something here: it is that none of us actually knows whether the others are telling the truth, whether they are actually officially diagnosed or not, and even if they were diagnosed by a professional, whether they were diagnosed correctly. We, either diagnosed or self-diagnosed (or who "think we have it"), choose to respect others and assume they are telling the truth, and when they were diagnosed by a therapist, we choose to believe they were diagnosed correctly (i.e. not misdiagnosed with autism). It would be appreciated if us, who, for different reasons, did not get an official diagnosis (personally at my age I don't know how it could help me, nor do I have the financial means to get one), could get the same respect as we give others, whether they are officially diagnosed or self-diagnosed. We assume that you (officially diagnosed) are telling the truth, and we assume that you were correctly diagnosed (unless you tell us otherwise). We could choose to believe that you are lying, and/or that your therapist misdiagnosed you, but we don't.

Have to the least the wisdom to realise that people who mention that they are self-diagnosed are telling you the truth, they are not pretending to have been officially diagnosed.

Listen to this woman describing how she felt after a "conversation" with a psychologist, who did not respect her, and invalidated everything she said to him (that's how it feels to some of us too when you invalidate our statements about ourselves, it is useless and destructive):



(note that she did get a diagnosis of PDD-NOS from another therapist)

This topic got me thinking (sorry, a bit off topic here).
I'm a stutterer. Everyone knows I stutter because it's obvious when I speak. I was diagnosed in my first year of high school by a Speech Language Pathologist and received Speech Therapy.
Still, I went my entire primary school years undiagnosed although I stuttered in primary school too. Does that mean I wasn't a stutterer in primary school because I wasn't officially diagnosed?
If I hadn't been officially diagnosed would that mean I'm not a stutterer or I'm a suspected stutterer even though I obviously stutter? Or I wouldn't be able to tell anyone I stutter because I'm not diagnosed?
In the same way, I'm autistic. People know I'm autistic because it's obvious. I wasn't diagnosed in school because there was no diagnosis available. My autism has been recognised by many professionals over the years but I don't have a piece of paper saying I'm autistic because frankly, there was no point. There's no autism therapy for adults and I don't want to go on disability. The only reason I'm in the process of getting an official diagnosis now is because I may need a few accommodations at work.
When I have my diagnosis I won't think of myself any differently and I'll still be the same person I was with the same challenges. I'll just have an official diagnosis.
Does that mean I'm not autistic now or I'm a suspected autistic even though it's obvious I am? Should I not have told anyone I'm autistic because I'm not diagnosed 'officially'. I find this all very confusing.

Seems to me like some people on this site have a vested interest in closing down debate on topics they find uncomfortable. I hope they don't win.

PS: Dianthus, what makes you think I wouldn't be equally glad not to see your posts? You and B19 seem to me to be on the warpath as much as anybody else, yet you are projecting your hostile feelings onto "us", the "insensitive, "unkind", "uncompassionate", "invalidating" and "aggressive" ones (no personal slights there; nope not one).

Urgh, spelling mistakes...

Last edited by NiceCupOfTea on 01 Dec 2014, 4:42 pm, edited 2 times in total.

How do costs and location support self-diagnosis?



The site as a whole is not constantly open to criticism. People who want to avoid criticism have at least three options:

1. Post in the Haven.
2. Create a personal thread in which they specify what kind of support they want; most other posters respect their wishes, from what I've seen.
3. PM other members for a private conversation.
4. Block other posters with the foe option? I'm not sure that it's working properly yet.

My point is that there are places on this site where criticism is allowed, and places where it is not. What I suggest is the following: if it is disrespectful and against the rules for someone to come storming into the Haven with a debate, maybe it is also disrespectful for people to come into sub-forums where debate is allowed, and suggest that the debate stop, or that the way that it is conducted should change, or that posters consider their feelings (over the feelings of other members who don't mind the discussion) like we do in the Haven, or make nasty insinuations about the debaters, especially if that debate is not against the site rules.

It is certainly ok to criticize the process of official diagnosis, and I do it frequently, questioning some of the tasks on the ados and questions on self- or parent-report questionnaires.
It seems that posters against self-diagnosis did not say that official diagnosis was flawless or not open to criticism.
It seems that this stance is what some posters want to attribute to others, but again, I want to set the record straight that I didn't say that official diagnosis cannot be questioned or is "godlike" or "almighty", the quoted words being used not by me.

Yes I remember it...I don't remember much of what was said, but I remember that it was very aggressive and unfair. I really hate to see people get treated that way here. I'm glad I was able to help!



It's really unfair when people make that assumption, that people must be just reading an article and deciding based on that...even the first reply in this thread launches into that. That gets said here a lot and I don't understand why because all I have seen is people talking about putting some serious thought and research into it.

I just ignore it when people make general comments like that not aimed at anyone in particular. But when people start going after one person in particular that way, that's just rude.



Again I really do hate to see people get treated that way. I'm sorry you had to go through that.



All good points. And the main one is that we are just asking for the same respect we give to others.

I have criticisms of professional diagnosis, just like other people have criticisms of self-diagnosis, but I am not bringing up my criticisms and opinions of that every time a poster mentions having an official diagnosis.



I'm not sure what they want here because they don't want people to say they are self-diagnosed, but they don't want people to misrepresent themselves either, so to me it just sounds like completely insane circular logic that goes nowhere.



I do wish that people would try to understand how it feels.

I believe the posters who do those things here either do not care how others feel, or do not know how to care, or for some other reason are incapable of doing so at that time. Otherwise they would not be behaving in those ways to begin with. Occasionally I do see someone admit plainly that they do not care.

Some really do not comprehend the amount of patience and effort it takes to respond to them in a kind and respectful manner. That's why the recent talk about "taking personal responsibility" for our feelings is so off base. I'm already taking care of my own feelings AND trying to be considerate of them too, but I don't see any of the same consideration coming back from them.

May I respectfully direct you to my last post to remind you of some of the names you have called us?

I don't want to close down the debate, good grief if I did I wouldn't be participating in it and keeping it going, but I would ALSO like to be able to talk about my experiences at other times WITHOUT the possibility debate and criticism. In light of everything that is being said here, I don't think that is going to be possible on this forum anymore.



I don't think know where I said something that made you think that (?) but honestly I would prefer it if you couldn't see my posts at all. I have seen the way you treat people here in multiple circumstances and I don't like and I don't want to be treated that way, ever.

I think the foe option is the same as I've used on other forums, as this looks like this forum is using the same board software as those did, and all it does is hide someone's posts. But if other people quote that person, you can still see what they wrote, so it doesn't really accomplish much.

I'm too lazy to dig out any more of your previous posts. I'm not that interested in re-reading them for the second time. But I would disagree that you are not trying to shut down criticisms of self-diagnosis.




It was literally in a post on this page or the previous one, but again I don't feel like going back to check. You didn't reference anyone by name, but it wasn't rocket science to deduce the posters who you were talking about.

I don't like how you talk about certain people on here either. Touché.

Last edited by NiceCupOfTea on 01 Dec 2014, 5:25 pm, edited 1 time in total.

"insensitive, "unkind", "uncompassionate", "invalidating" and "aggressive"?

I stand by it.

I can see why you would adhere to that view, Dianthus. Not even the Nobel Prizewinner for Peace, the Dalai Lama, could have described the posts you were referencing as being "sensitive" "kind" "compassionate" "validating" or "peaceful". They weren't. Nor were they neutral. You were describing what happened back there.

And yet you call yourself "kind", "considerate", and "patient", when you display none of these qualities.

B19 does, to be fair, display kindness to people. And so do many other people on this site. As should be patently obvious, I am not one of them. I do feel empathy for people, but it is hard for me to express: I'm not remotely huggy-wuggy nor capable of being so.

@B19 - Well, I respectfully and huggy-wuggily disagree. What am I meant to do next? Put a smiley face or a heart? Hell, I'll add both