False Dx: Up to 70% of dx'd may not actually be autistic?

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__Elijahahahaho
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15 Apr 2024, 7:43 am

blitzkrieg wrote:
__Elijahahahaho wrote:
I also thought - what does it matter.
If you look at the actual accommodations people will need - these should be available to anyone
anyway, if they say they feel pain otherwise, since most of them are at very little cost to an employer or friend.


Accommodations for disabilities, whilst perhaps technically available to anyone, are actually very difficult to obtain, at least in the UK - many employers don't want to be 'bothered' with someone who has extra needs.


Exactly! Employers are as*holes and if they are as*holes to extra needs kid, they are as*holes to others also.

My point is employers should be kinder to everyone regardless of label,
kind at least to the point that they wouldn't mind accommodating autism,
because practically speaking the accommodations aren't that hard.



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16 Apr 2024, 4:11 pm

Fenn wrote:
If, for the sake of argument, I except your definition exactly “as is” then the statement “some people, n percent, diagnosed as autistic do not “have” autism makes some sense. The problem? The DSM doesn’t define it that way. Neither does the ICD.

I think MushroomPrincess's point is that the DSM criteria for autism are wrong (or "broad to the point of meaninglessness", to use her words) in the first place.

I don't think her argument is without merit. After all, if a panel of scientists can just change the definition of autism, then does having the diagnosis actually mean anything to begin with? I think that's a valid question. For example, when I was a child, to be diagnosed with autism you had to have a delay in language development. That was considered a defining trait. The quote-unquote "epidemic" quote-unquote "happened" when they removed that criterion. Oops. This, I think, directly contradicts the all-too-common assertion that testing methods have "improved" over time; we can, in fact, pinpoint the precise event in which the test standards worsened. If nobody can say what autism is or isn't (and this thread is proof that you cannot, at least, not without a fight) then haven't we taken a step backwards?

Regardless of how we feel about Dr. Rowland (personally I think he's a nutjob), the point still stands that we don't have an autism epidemic, we do in fact have an autism diagnosis epidemic. It is my opinion that the majority of people who fit the criteria for high functioning autism, circa 2024, aren't actually autistic in any meaningful way (I'll elaborate more on this below).

ASPartOfMe wrote:
I agree that one can be mis or undiagnosed and be actually autistic. I agree that one could have a professional autism diagnoses be allistic.

This is true and I agree.

ASPartOfMe wrote:
The belief in massive over-diagnosis does a lot more harm than good. It conveys the message to those wondering if they might be autistic to stop wasting their time, they are a fuck-up end of story.

Well.... The bitter pill nobody wants to swallow is that some people are just fuck-ups, end of story, and they don't have a right to make that my problem. I respect your opinion, but my opinion is that the forced-teaming of malingering social malcontents does our community more harm than good. As an autistic woman who has occasionally dated autistic (or rather "autistic") men, I'd like to be secure in the knowledge that my autistic boyfriend is #ActuallyAutistic, and not a malignant sociopath whose parents doctor-shopped his asperger's diagnosis because it would be less stigmatizing for him. But modern autism/asperger's scholarship tells me that I can't have that and that I should feel bad for wanting it. That's misogyny in action.



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16 Apr 2024, 4:40 pm

Why is it misogyny in action?

Can't it happen in reverse with sociopathic female wannabes?
I've come across many women who seem to fake it to cover their eccentricities.

Sorry if this is a derail to the topic.


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blitzkrieg
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16 Apr 2024, 4:40 pm

IsabellaLinton wrote:
Why is it misogyny in action?

Can't it happen in reverse with sociopathic female wannabes?
I've come across many women who seem to fake it to cover their eccentricities.

Sorry if this is a derail to the topic.


I was thinking the same thing...



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16 Apr 2024, 5:01 pm

I was referring to some of the women I see on YouTube talking about their new diagnoses. It's not my place to judge whether those diagnoses are valid or not, and I hope and trust that most of them are, but there's a chance some of them are faking it entirely, or else their diagnosis wasn't very formal. Some of them just say "Oh, my therapist / psychiatrist told me I'm autistic" without much or any clinical testing.

I'm not casting shade on autistic women or youtubers, it's just that it seems there are more adult women "coming out" online than autistic men, and since I'm a woman I watch their content to see what they have to say. Again, this is rare for me to second guess them and I know most women are likely underdiagnosed , but since you mentioned misogyny I thought I'd throw it into the discussion.


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naturalplastic
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16 Apr 2024, 5:07 pm

Ages ago someone on WP asked if autism is a truly scientific diagnosis.

I didnt respond except in my head.

But he asked a good question.

So many absolutly contradictory things are said to be symptoms of autism (like not being able to think abstractly, and being wrapped up in abstract thought, no imagination, and too much imagination). My aspie Dx seems very real.

Explains a lot of stuff in my life. But...

Hopefully they will find tangible biological markers to go with autism soon.



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16 Apr 2024, 5:09 pm

Barchan wrote:
to be diagnosed with autism you had to have a delay in language development. That was considered a defining trait. The quote-unquote "epidemic" quote-unquote "happened" when they removed that criterion. Oops. This, I think, directly contradicts the all-too-common assertion that testing methods have "improved" over time; we can, in fact, pinpoint the precise event in which the test standards worsened. If nobody can say what autism is or isn't (and this thread is proof that you cannot, at least, not without a fight) then haven't we taken a step backwards?

Interesting. I was DXed in 2009. There was nobody still alive by then who would have been old enough to remember such a detail from my early years, so no corroboration possible. I don't remember it coming up during the DX. Since then I've racked my brains and never been able to remember anything about my early years to suggest I had a delay in language development, and strangely I was rather ahead of the other kids in such skills and was top of my class at school till I was about 9. But the diagnostic manual wasn't DSM, it was another one I forget the name of which the diagnostician mentioned in the report as being more stringent than DSM. Maybe it wasn't so stringent in terms of language delays?

I'm well convinced that I have ASD and that was severe enough to have given me problems at work and socially, and am relieved that the question of language delay didn't scupper my diagnosis. So from my own perspective I'm glad they've ditched the criterion. Not being an expert on diagnostic criteria (yes some of them still confuse me somehow), I can't vouch for the validity of the following statement which I found on the Web, but not surprisingly, given my experiences, I like it:

The removal of the language delay criterion in DSM-5 reflected a shift in understanding towards recognizing the diverse communication profiles observed in individuals with autism and the need for more flexible diagnostic criteria that capture the full range of communication challenges experienced by individuals on the autism spectrum.

I would defend with my dying breath that I wasn't wrongly diagnosed. If it quacks like a duck etc., then it probably is a duck, regardless of its early language delay history. I also think overdiagnosis of ASD less harmful than underdiagnosis, depending on how wisely the interventions are selected and applied.



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16 Apr 2024, 5:16 pm

naturalplastic wrote:
Ages ago someone on WP asked if autism is a truly scientific diagnosis.

I didnt respond except in my head.

But he asked a good question.

So many absolutly contradictory things are said to be symptoms of autism (like not being able to think abstractly, and being wrapped up in abstract thought, no imagination, and too much imagination). My aspie Dx seems very real.

Explains a lot of stuff in my life. But...

Hopefully they will find tangible biological markers to go with autism soon.


Indeed. I think they try to be scientific but it won't be an exact science while ever the shrinks have anything to do with it. I agree the biological markers are the way to go. They'll have little choice but to calibrate the thresholds against the existing diagnostic methods, but I still think it'll likely end up more objective.



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16 Apr 2024, 5:21 pm

I had a language delay. I was lucky that my mother kept my "baby book" with general milestones in it, and all of my school reports starting in 1973. Most of the anecdotal comments by my teachers and my school speech therapist smacked of autism and / or ADHD.

As part of my Developmental History I submitted links to old family movies which were on filmstrip but I converted to digital. You can see from a very young age that I had considerable sensitivities, stims, and meltdowns. I looked autistic - if such a thing exists - because of my gait and the way I carried myself. Even when I set off to the working world I received comments in workplace evaluations like "She doesn't make eye contact", or "Shies away from group interaction". In my custody assessments during divorce we all had to be evaluated by court psychologists. They said I needed to improve my skills with interpersonal communication, and that I didn't seem to understand body language. I was able to submit all of those papers as evidence of my development.

Sorry for the ramble. I'm just explaining how I got past the "childhood evidence" bit. I know some people like yourself TD didn't have access to that information but it sounds like you were given a very thorough screening in its absence.


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16 Apr 2024, 5:32 pm

I didn’t have a language delay. I talked early. My testing was very thorough though, and I certainly have autism. Having said that, I don’t like the idea of questioning people’s diagnoses. In my opinion, it’s questioning a part of their identity. Just because a person didn’t have thorough diagnostic testing doesn’t mean they don’t have it. Not everyone can afford thorough testing (or sometimes any testing). I don’t think I’ve ever doubted that anyone was autistic apart from a banned member or two. There is a certain amount of risk that people will prey on a vulnerable population when it comes to online forums. Of course, that’s not to say that autistics can’t be manipulative too.


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Last edited by TwilightPrincess on 16 Apr 2024, 5:34 pm, edited 1 time in total.

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16 Apr 2024, 5:34 pm

IsabellaLinton wrote:
I was referring to some of the women I see on YouTube talking about their new diagnoses. It's not my place to judge whether those diagnoses are valid or not, and I hope and trust that most of them are, but there's a chance some of them are faking it entirely, or else their diagnosis wasn't very formal. Some of them just say "Oh, my therapist / psychiatrist told me I'm autistic" without much or any clinical testing.

I'm not casting shade on autistic women or youtubers, it's just that it seems there are more adult women "coming out" online than autistic men, and since I'm a woman I watch their content to see what they have to say. Again, this is rare for me to second guess them and I know most women are likely underdiagnosed , but since you mentioned misogyny I thought I'd throw it into the discussion.


I was thinking simply that if there are men who fake autism, then inevitably there will be women who do it too.

I don't think there are many people who do fake autism, but it stands to reason, as a matter of probability, that there will be some folk who do do that, both male and female.



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16 Apr 2024, 5:39 pm

That's what I meant too Blitz. The only reason I mentioned it is to say if there are people faking it or having their parents buy them diagnoses like Barchan suggested, it wouldn't be only men and I don't see how misogyny applies.

ASPartOfMe has pointed out that there are reportedly quite a few people who want to jump on the bandwagon of being autistic / neurodiverse and that in some cases, that hurts the autistic population's credibility.

I still don't think it's anywhere 70% like the OP suggests. I'd struggle to believe even 7%, but I'm in no place to judge.


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16 Apr 2024, 5:41 pm

IsabellaLinton wrote:
That's what I meant too Blitz. The only reason I mentioned it is to say if there are people faking it or having their parents buy them diagnoses like Barchan suggested, it wouldn't be only men and I don't see how misogyny applies.

ASPartOfMe has pointed out that there are reportedly quite a few people who want to jump on the bandwagon of being autistic / neurodiverse and that in some cases, that hurts the autistic population's credibility.

I still don't think it's anywhere 70% like the OP suggests. I'd struggle to believe even 7%, but I'm in no place to judge.


I was wondering how misogyny applied also?

It just seemed like a baseless assertion by Barchan (sorry, Barchan).



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16 Apr 2024, 5:45 pm

I think Barchan already explained that she meant no harm in her comment.
If women could stand the risk of dating "fake" autistics, so could men.
I think we all agree on that.
I really doubt there are many fake autistics of any gender though.


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16 Apr 2024, 5:46 pm

IsabellaLinton wrote:
I think Barchan already explained that she meant no harm in her comment.
If women could stand the risk of dating "fake" autistics, so could men.
I think we all agree on that.
I really doubt there are many fake autistics of any gender though.


For sure.



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16 Apr 2024, 5:47 pm

I think she was referring to predators. Autistic women are especially susceptible to falling prey to that sort of thing. That’s not to say that anyone can’t fake a diagnosis for this or other reasons although, as I already stated, I never doubt anyone’s diagnosis unless there are exceptional circumstances involved which solely happened once or twice to me. Of course, just because a person is autistic doesn’t mean they are a good person either.

Barchan wrote:
As an autistic woman who has occasionally dated autistic (or rather "autistic") men, I'd like to be secure in the knowledge that my autistic boyfriend is #ActuallyAutistic, and not a malignant sociopath whose parents doctor-shopped his asperger's diagnosis because it would be less stigmatizing for him. But modern autism/asperger's scholarship tells me that I can't have that and that I should feel bad for wanting it. That's misogyny in action.


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