Abandoning Asperger"s for ASD

Page 3 of 5 [ 70 posts ] Go to page Previous 1, 2, 3, 4, 5 Next

rdos
Veteran
Veteran

Joined: 6 Jul 2005
Age: 63
Gender: Male
Posts: 6,089
Location: Sweden

07 Aug 2023, 8:14 am

I didn't abandon the term "aspie" because of nazi legacy, but because some people couldn't differentiate somebody with sub-clinical autistic traits from somebody diagnosed with AS. The term initially meant somebody with autistic traits, not somebody diagnosed with AS.

BTW, it still seems like 9 in 10 of adults high on autistic traits are not diagnosed with ASD. So, there is still more room for increasing prevalence of ASD, by forcing children to get diagnosed in order to handle school. The most likely rate of autistic traits is 1 in 6.

MatchboxVagabond
Veteran
Veteran

Joined: 26 Mar 2023
Age: 44
Gender: Male
Posts: 1,730

07 Aug 2023, 9:57 am

firemonkey wrote:

MatchboxVagabond wrote:

You need a bunch of external signs that may disappear very quickly in some cases, otherwise it becomes a schizophrenia spectrum disorder for some odd reason.

How do you explain people like me? My psychiatric diagnosis has chopped and changed over the years, but has mostly stayed within the 'psychosis/schizophrenia spectrum'. It currently seems to go back and forth between schizophrenia and schizoaffective. The first time I was dxed as a person with an SMI was in 1975. The ASD(Asperger's) dx came in 2019, and only happened because I moved and came under a more intelligent and open minded psychiatrist. I'd spent nearly 2 decades getting nowhere trying to get through to my previous mental health team in Essex that there was more going on than just SMI.

My daughter has worked in the caring profession for over 25 years helping a wide variety of people(mentally ill,physically disabled, autistic,intellectual disability,dementia) and is currently branch manager of a home care agency.

Her view is the SMI is secondary to the ASD(Asperger's) and the result of the stresses and strains of having been an undiagnosed autistic child and teenager.

In the conventional way such things are measured I'm very intelligent, but my adaptive functioning doesn't match up to that. Indeed without the support of my daughter and granddaughters I'd struggle to maintain a healthy level of independence.

I'm not aware of stimming. However I'm not totally sure as to what qualifies as ' stimming' .

As the criteria are stated, if you're not stimming then it wouldn't be ASD, it could be Social Pragmatic Communication Disorder. Unfortunately, in many cases, the stimming behavior gets chalked up as being body focused repetitive behaviors that are done as a coping mechanism for an anxiety disorder. Which is sort of true and not, it's still stimming.

And what you're describing is more or less exactly what happened to me. Mysteriously, when I simply acknowledged that I had been horribly abused and neglected, the paranoia went away and didn't come back. The hallucinations that I had mysteriously only ever happened when I was having migraines, and treating them made them go away as well.

In all honesty, it looks to me like your psychiatrist probably was using the ICD rather than DSM as a basis for the diagnosis. I don't know what is normal where you live, but the DSM is mainly used in the US. The two tend to go in roughly the same direction most of the time, but sometimes, like with autism, the DSM was badly screwed up to the point of being defunded.

carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 1,933

07 Aug 2023, 10:25 am

I was diagnosed as an aspie & still really refer myself as that. Obviously a new generation will use autistic.

There`s a few things that have a Nazi past, including VW Beatles, its still a rumour that it was designed in part by A Hitler.

_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw

firemonkey
Veteran
Veteran

Joined: 23 Mar 2015
Gender: Male
Posts: 5,648
Location: Calne,England

07 Aug 2023, 10:39 am

I'm in the UK. So the ICD was used.

skibum
Veteran
Veteran

Joined: 18 Jul 2013
Age: 57
Gender: Female
Posts: 8,374
Location: my own little world

07 Aug 2023, 10:57 am

carlos55 wrote:

Most of my childhood was spent being driven around in a VW Beetle and a VW Bus. I learned to drive in the VW Bus. I miss those cars so much. I adore them and wish I could still have them.

_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph

MatchboxVagabond
Veteran
Veteran

Joined: 26 Mar 2023
Age: 44
Gender: Male
Posts: 1,730

07 Aug 2023, 10:58 am

firemonkey wrote:

I'm in the UK. So the ICD was used.

I think that's probably why. The ICD is a lot better on this than the DSM 5 is. I do think that it is worth considering that some forms of schizophrenia do share an awful lot in common with autism. Particularly disorganized, schizophrenia is different from autism, but does have a lot of symptoms that are relatable to autistic ones.

At the end of the day, there are some pretty significant gaps in terms of not having a good diagnosis to cover the gap between autism and the clusters A and C personality disorders as well as there not being a decent diagnosis to cover what would have been clearly autism if the developmental deviations had been apparent early on.

It's been my view for decades, as somebody who had been diagnosed with schizoaffective disorder, that what I was dealing with felt more developmental and neurological than an SMI. But, I'm not aware of any research that really settles things, and it seems to be up in the air about whether or not there's overlap between autism and the schizophrenia spectrum.

nominalist
Supporting Member

Joined: 28 Jun 2007
Gender: Male
Posts: 2,740
Location: Lower Rio Grande Valley of Texas (born in NYC)

07 Aug 2023, 12:15 pm

MatchboxVagabond wrote:

So, to suggest that I'm ignoring research that I disagree with is just plain ignorant. The issue here is that there hasn't been much research conducted and what little there has been has been ignored for political reasons. So, we get tossed under the bus, because of a fictitious concern about overtreatment.

You misunderstood my point. By my standards, I was referring to my scientific standards, not whether I happened to agree with a research project. Many times, in my own life, I have been obliged to entirely reformulate my findings after finding additional data.

_________________
Mark A. Foster, Ph.D. (retired tenured sociology professor)
36 domains/24 books: http://www.markfoster.net
Emancipated Autism: http://www.neurelitism.com
Institute for Dialectical metaRealism: http://dmr.institute

MatchboxVagabond
Veteran
Veteran

Joined: 26 Mar 2023
Age: 44
Gender: Male
Posts: 1,730

07 Aug 2023, 9:35 pm

nominalist wrote:

MatchboxVagabond wrote:

If I'm understanding correctly, that still seems awfully sloppy and not really applicable to what I was referring to.

In this case, they ignored emerging research in order to remove a diagnosis that was still being actively used on the basis that they believed there were false positives. That's always the case, and it always happens whenever there's something new out there. That applies just as much to medications and treatments as it does to diagnoses. In this case the DSM IV was only out for about 20 years with these new diagnoses, it's not even remotely surprising that there was some overdiagnosing going on. But, there had previously been massive underdiagnosing of people that would have qualified for diagnosis if there had been more awareness of things like masking.

It makes particularly little sense in this case as the technology available to settle the matter more conclusively has been developing at a rapid clip and in a lot of cases it's possible to identify what portions of the brain are firing, or not, in response to various situations. Waiting for the next revision to make such a drastic change was the ethical thing to do. I mean, for heaven's gate, they didn't even remove schizoid personality disorder and nobody has even established if it's possible to be a pure schizoid rather than just be misdiagnosed as one in spite of the diagnosis being many decades old.

nominalist
Supporting Member

Joined: 28 Jun 2007
Gender: Male
Posts: 2,740
Location: Lower Rio Grande Valley of Texas (born in NYC)

09 Aug 2023, 12:28 am

MatchboxVagabond wrote:

It makes particularly little sense in this case as the technology available to settle the matter more conclusively has been developing at a rapid clip and in a lot of cases it's possible to identify what portions of the brain are firing, or not, in response to various situations. Waiting for the next revision to make such a drastic change was the ethical thing to do. I mean, for heaven's gate, they didn't even remove schizoid personality disorder and nobody has even established if it's possible to be a pure schizoid rather than just be misdiagnosed as one in spite of the diagnosis being many decades old.

That may or may not happen. We were supposed to have super drugs by now which simply cured all diseases immediatetly by focusing on genetic markers. Never happened. It will probably happen someday, but those scientists overestimated the progress of the research.

I hoped that the predictions were true. I do not subscribe to the neurodiversity or anti-cure movement. I remember myself, as a child, with Autism. It was awful. Contrary to the claims of the neurodiversity movement, the problems were mostly in my head, not caused by my many bullies or a lack of accommodations. If I could snap my fingers and instantly cure all Autistics in the womb, I would do so.

Diagnostic manuals use existing data. Clinicians and researchers cannot wait for currently nonexistent research findings --- hoping that some new breakthroughs emerge in the near future. You work with what you have.

rdos
Veteran
Veteran

Joined: 6 Jul 2005
Age: 63
Gender: Male
Posts: 6,089
Location: Sweden

09 Aug 2023, 3:30 am

nominalist wrote:

MatchboxVagabond wrote:

I don't think the neurodiversity movement claims that autistic problems stem from bullying or lack of accommodation. That would be a bizarre claim. It's more like they claim that autistic preferences are innate and should be accepted as human diversity. I don't think cures will be available that changes preferences anytime soon, and we are not talking about one or a few either, rather a large number of differences.

Maybe you would enjoy being turned into an NT, but I certainly wouldn't. I like my preferences and don't want them changed (cured).

As for the input to diagnostic manuals, it's my impression that input is board meetings, and not research data. Autism research for a long time have had to adapt to the poor selection of diagnostic criteria, and it's an important reason why they don't make much progress.

skibum
Veteran
Veteran

Joined: 18 Jul 2013
Age: 57
Gender: Female
Posts: 8,374
Location: my own little world

09 Aug 2023, 2:00 pm

If someone had "cured" me of Autism while I was in the womb, I would have never ever forgiven them .

_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph

carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 1,933

09 Aug 2023, 2:20 pm

nominalist wrote:

MatchboxVagabond wrote:

I generally share the same views as you on autism and ND

I think the main block on genetic therapy is off target mutations. Changing one ends mutating others non faulty to faulty.

They are spending a lot of money & resources trying to resolve this, we have to look at all this from the perspective of a timeline. It was only 2003 the human genome was fully mapped, about 2016 we had CRISPR being used fully, then shortly after base editing.

Science is a bit like tetris other things get developed then things move on, most relevant being chip processor speed.

Mobile phones were rare just 25 years ago, quite primitive just 15 years ago now people are watching movies on them.

nominalist
Supporting Member

Joined: 28 Jun 2007
Gender: Male
Posts: 2,740
Location: Lower Rio Grande Valley of Texas (born in NYC)

09 Aug 2023, 6:13 pm

rdos wrote:

What I wrote is literally from the talks a leader of the neurodiversity movement. He wants more accommodations, not a cure.

Quote:

Maybe you would enjoy being turned into an NT, but I certainly wouldn't. I like my preferences and don't want them changed (cured).

That is why I said in the womb.

Quote:

As for the input to diagnostic manuals, it's my impression that input is board meetings, and not research data. Autism research for a long time have had to adapt to the poor selection of diagnostic criteria, and it's an important reason why they don't make much progress.

Who sits on those boards?

Last edited by nominalist on 09 Aug 2023, 6:16 pm, edited 1 time in total.

nominalist
Supporting Member

Joined: 28 Jun 2007
Gender: Male
Posts: 2,740
Location: Lower Rio Grande Valley of Texas (born in NYC)

09 Aug 2023, 6:14 pm

skibum wrote:

If someone had "cured" me of Autism while I was in the womb, I would have never ever forgiven them .

You wouldn't know any different. You would simply be the person that you were.

nominalist
Supporting Member

Joined: 28 Jun 2007
Gender: Male
Posts: 2,740
Location: Lower Rio Grande Valley of Texas (born in NYC)

09 Aug 2023, 6:16 pm

carlos55 wrote:

I hope those drugs come sooner rather than later.

Scorpius14
Veteran
Veteran

Joined: 7 Sep 2014
Gender: Male
Posts: 540
Location: wrong universe

09 Aug 2023, 6:47 pm

I'd like to erase the word aspergers and maybe autism from the minds of my family, too many negative associations, just reminded me of a conversation recently when i was just putting down a claim for disability allowance (I'm convinced I won't meet the criteria), parents just showed no empathy when detailing my condition (i'm not even aspergers diagnosed, just childhood asd), they have rough idea of how it affects me.. sensory issues, fear of crowds, shy and quiet. Just hard to look them in the face and wish myself to be somewhere else entirely.

Page 3 of 5 [ 70 posts ] Go to page Previous 1, 2, 3, 4, 5 Next

Jump to:

Abandoning Asperger"s for ASD Post Reply New Topic

Abandoning Asperger"s for ASD