My issue with DSM-5-TR's ASD criteria.

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FranzOren
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31 May 2024, 9:53 am

Does the Broad Autism Phenotype blur the differences between people with ASD and normal persons with autistic traits? To what extent does the Broad Autism Phenotype manifest into ASD and should get diagnosed as a young or older adult?


The problem I have with the DSM-5-TR diagnostic criteria for ASD is this “C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”



rse92
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31 May 2024, 12:14 pm

Are you autistic, or are you not?

I guess my question to you is, why do you care? Are you asking for a friend?



FranzOren
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31 May 2024, 12:20 pm

rse92 wrote:
Are you autistic, or are you not?

I guess my question to you is, why do you care? Are you asking for a friend?


I have a diagnosis of Autistic Disorder according to recent medical records, it used to be Pervasive Developmental Disorder Not Otherwise Specified, and when I was in mental institution for command hallucinations and homicidal ideation, I got diagnosed with Autism Spectrum. The psychiatrist there decided to leave the word "Disorder" out of the picture to avoid further stigma.

Also yes, I am asking for a friend I am lonely and feel like an alien in this neurotypical world



MatchboxVagabond
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31 May 2024, 1:33 pm

FranzOren wrote:
Does the Broad Autism Phenotype blur the differences between people with ASD and normal persons with autistic traits? To what extent does the Broad Autism Phenotype manifest into ASD and should get diagnosed as a young or older adult?


The problem I have with the DSM-5-TR diagnostic criteria for ASD is this “C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”

You need someway of dealing with the problem that there is a line and people just slightly on opposite sides of the line may not be really that different. Even being spectrum adjacent, as in not quite having enough of the autistic pokemon collected to get a diagnosis does not imply that any of the traits are any less severe, they may be more severe, just fewer areas affected. It's part of why Social Pragmatic Communication Disorder and Sensory Processing Disorders were created. It's far from perfect as the DSM 5 introduced some pretty significant holes that the folks that wrote the criteria prefer not to talk about.

And I don't necessarily disagree that C. is a problem. It's not a particularly well defined line between what constitutes early development, especially when you've got folks with higher IQs and more ability to mask that may not actually show obvious signs until many years later. Or at lower IQ levels where proper participation in the evaluation process may be hindered and a different condition or disorder may be a more appropriate explanation.



FranzOren
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31 May 2024, 1:36 pm

MatchboxVagabond wrote:
FranzOren wrote:
Does the Broad Autism Phenotype blur the differences between people with ASD and normal persons with autistic traits? To what extent does the Broad Autism Phenotype manifest into ASD and should get diagnosed as a young or older adult?


The problem I have with the DSM-5-TR diagnostic criteria for ASD is this “C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”

You need someway of dealing with the problem that there is a line and people just slightly on opposite sides of the line may not be really that different. Even being spectrum adjacent, as in not quite having enough of the autistic pokemon collected to get a diagnosis does not imply that any of the traits are any less severe, they may be more severe, just fewer areas affected. It's part of why Social Pragmatic Communication Disorder and Sensory Processing Disorders were created. It's far from perfect as the DSM 5 introduced some pretty significant holes that the folks that wrote the criteria prefer not to talk about.

And I don't necessarily disagree that C. is a problem. It's not a particularly well defined line between what constitutes early development, especially when you've got folks with higher IQs and more ability to mask that may not actually show obvious signs until many years later. Or at lower IQ levels where proper participation in the evaluation process may be hindered and a different condition or disorder may be a more appropriate explanation.



That actually makes sense.



MatchboxVagabond
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31 May 2024, 5:08 pm

FranzOren wrote:
MatchboxVagabond wrote:
FranzOren wrote:
Does the Broad Autism Phenotype blur the differences between people with ASD and normal persons with autistic traits? To what extent does the Broad Autism Phenotype manifest into ASD and should get diagnosed as a young or older adult?


The problem I have with the DSM-5-TR diagnostic criteria for ASD is this “C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”

You need someway of dealing with the problem that there is a line and people just slightly on opposite sides of the line may not be really that different. Even being spectrum adjacent, as in not quite having enough of the autistic pokemon collected to get a diagnosis does not imply that any of the traits are any less severe, they may be more severe, just fewer areas affected. It's part of why Social Pragmatic Communication Disorder and Sensory Processing Disorders were created. It's far from perfect as the DSM 5 introduced some pretty significant holes that the folks that wrote the criteria prefer not to talk about.

And I don't necessarily disagree that C. is a problem. It's not a particularly well defined line between what constitutes early development, especially when you've got folks with higher IQs and more ability to mask that may not actually show obvious signs until many years later. Or at lower IQ levels where proper participation in the evaluation process may be hindered and a different condition or disorder may be a more appropriate explanation.



That actually makes sense.

And it only took 15 years after my evaluation to realize that. Some people are just harder to properly evaluate than others are, and none of this is fool proof as we're talking about externally visible things rather than what the brain is doing internally.

Unfortunately, when things are left unspecified, it can create some ambiguity about the ultimate definition in practice.



FranzOren
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31 May 2024, 7:53 pm

I agree ;)



ProfessorJohn
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01 Jun 2024, 10:25 am

Criteria C might be in there to exclude people who were NTs early in life but then started showing autistic traits due to a head injury or reaction to trauma. They wouldn't be ASD but some other condition due to that factor.

The issue with almost all DSM-5 criteria is that diagnosing is not a perfect science. People come in with traits or symptoms from several disorders, and there is overlap between symptoms from different disorders. And people might have some symptoms but not enough to meet the diagnostic criteria. Does that mean they don't have the disorder? According to the DSM 5 it does, but they might have other ways the symptoms manifest themselves.

A case in point. One day I was reading a description of Obsessive Compulsive Personality Disorder (different from OCD) and typical behaviors of the person with OCPD. This was in something other than the DSM 5. I started laughing because it described by Dad perfectly, and then it clicked that that was his "issue". When I look at the DSM 5 criteria I didn't see him meeting them, but after reading that other article I could then fit his behaviors into the DSM5 criteria better.

It was that way with Asperger's and the DSM IV also. I remember seeing the criteria for that, and didn't feel like I met them. I don't focus on parts of objects, and I didn't think that I collected facts about something without being interested in the larger picture (or however they stated it). Then one day I saw a website that described ways Asperger's manifests itself in everyday life, and I was like "Wow! That is me!". I knew that there was something different about me, but I could never figure it out from the DSM IV or DSM 5 criteria. I asked a therapist I was seeing who know a lot about Autism (his son had Aspergers and eventually committed suicide) if I had Asperger's and he said yes, but not at a severe level. He said he figured that out by our third or fourth session.

Sorry to Ramble On (good Led Zeppelin song) but tried to show that diagnostic criteria are not always clear cut or perfect. They are the opinions of professionals, hopefully backed by some research, but far from perfect, which is why they change from edition to edition of the DSM



FranzOren
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01 Jun 2024, 10:39 am

ProfessorJohn wrote:
Criteria C might be in there to exclude people who were NTs early in life but then started showing autistic traits due to a head injury or reaction to trauma. They wouldn't be ASD but some other condition due to that factor.

The issue with almost all DSM-5 criteria is that diagnosing is not a perfect science. People come in with traits or symptoms from several disorders, and there is overlap between symptoms from different disorders. And people might have some symptoms but not enough to meet the diagnostic criteria. Does that mean they don't have the disorder? According to the DSM 5 it does, but they might have other ways the symptoms manifest themselves.

A case in point. One day I was reading a description of Obsessive Compulsive Personality Disorder (different from OCD) and typical behaviors of the person with OCPD. This was in something other than the DSM 5. I started laughing because it described by Dad perfectly, and then it clicked that that was his "issue". When I look at the DSM 5 criteria I didn't see him meeting them, but after reading that other article I could then fit his behaviors into the DSM5 criteria better.

It was that way with Asperger's and the DSM IV also. I remember seeing the criteria for that, and didn't feel like I met them. I don't focus on parts of objects, and I didn't think that I collected facts about something without being interested in the larger picture (or however they stated it). Then one day I saw a website that described ways Asperger's manifests itself in everyday life, and I was like "Wow! That is me!". I knew that there was something different about me, but I could never figure it out from the DSM IV or DSM 5 criteria. I asked a therapist I was seeing who know a lot about Autism (his son had Aspergers and eventually committed suicide) if I had Asperger's and he said yes, but not at a severe level. He said he figured that out by our third or fourth session.

Sorry to Ramble On (good Led Zeppelin song) but tried to show that diagnostic criteria are not always clear cut or perfect. They are the opinions of professionals, hopefully backed by some research, but far from perfect, which is why they change from edition to edition of the DSM


That it exactly what I mean.



FranzOren
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01 Jun 2024, 10:57 am

ProfessorJohn wrote:
Criteria C might be in there to exclude people who were NTs early in life but then started showing autistic traits due to a head injury or reaction to trauma. They wouldn't be ASD but some other condition due to that factor.

The issue with almost all DSM-5 criteria is that diagnosing is not a perfect science. People come in with traits or symptoms from several disorders, and there is overlap between symptoms from different disorders. And people might have some symptoms but not enough to meet the diagnostic criteria. Does that mean they don't have the disorder? According to the DSM 5 it does, but they might have other ways the symptoms manifest themselves.

A case in point. One day I was reading a description of Obsessive Compulsive Personality Disorder (different from OCD) and typical behaviors of the person with OCPD. This was in something other than the DSM 5. I started laughing because it described by Dad perfectly, and then it clicked that that was his "issue". When I look at the DSM 5 criteria I didn't see him meeting them, but after reading that other article I could then fit his behaviors into the DSM5 criteria better.

It was that way with Asperger's and the DSM IV also. I remember seeing the criteria for that, and didn't feel like I met them. I don't focus on parts of objects, and I didn't think that I collected facts about something without being interested in the larger picture (or however they stated it). Then one day I saw a website that described ways Asperger's manifests itself in everyday life, and I was like "Wow! That is me!". I knew that there was something different about me, but I could never figure it out from the DSM IV or DSM 5 criteria. I asked a therapist I was seeing who know a lot about Autism (his son had Aspergers and eventually committed suicide) if I had Asperger's and he said yes, but not at a severe level. He said he figured that out by our third or fourth session.

Sorry to Ramble On (good Led Zeppelin song) but tried to show that diagnostic criteria are not always clear cut or perfect. They are the opinions of professionals, hopefully backed by some research, but far from perfect, which is why they change from edition to edition of the DSM


But what if a person is carrying genes that can cause ASD and environmental factors as well, did not show symptoms in childhood, but became mentally ill, due to environmental factors, due to so many social rules, and then that gene became activated and he or she started to show symptoms of ASD? Then she might have ASD, it should not have appeared in childhood if it is mild or atypical presentation or late-onset threshold of PDD-NOS, from DSM-IV-TR, for example.


Info about Autism Spectrum and Other PPDs

Another info about ASD an other PDDs

Image



ProfessorJohn
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01 Jun 2024, 11:24 am

That is certainly possible, I suppose. I guess one problem is that we still don't know enough about ASD to know if it can lie dormant and then be triggered by environmental events later on. And that would be hard to determine. Do we know the exact genetic sequence associated with ASD? We would need to know that and be able to measure that in people to know who is predisposed or not. Then we would need to know the person's case history to know they weren't showing symptoms before the event, etc.

The more recent DSM manuals try to base any changes they make on empirical research, and trying to answer your question would be tough from a research standpoint. Doesn't mean we won't ever know that, though.

And if we can later determine that it might lead to a whole new disorder, something like "Stress Induced Autism Spectrum Disorder', since the treatment for it would probably be different than for those who had been demonstrating Autism since birth



FranzOren
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01 Jun 2024, 11:46 am

ProfessorJohn wrote:
That is certainly possible, I suppose. I guess one problem is that we still don't know enough about ASD to know if it can lie dormant and then be triggered by environmental events later on. And that would be hard to determine. Do we know the exact genetic sequence associated with ASD? We would need to know that and be able to measure that in people to know who is predisposed or not. Then we would need to know the person's case history to know they weren't showing symptoms before the event, etc.

The more recent DSM manuals try to base any changes they make on empirical research, and trying to answer your question would be tough from a research standpoint. Doesn't mean we won't ever know that, though.

And if we can later determine that it might lead to a whole new disorder, something like "Stress Induced Autism Spectrum Disorder', since the treatment for it would probably be different than for those who had been demonstrating Autism since birth


Or we can make two sections:

1) Developmental Autism Spectrum Disorder

2) Acquired Autism Spectrum Disorder



MatchboxVagabond
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01 Jun 2024, 7:26 pm

ProfessorJohn wrote:
Criteria C might be in there to exclude people who were NTs early in life but then started showing autistic traits due to a head injury or reaction to trauma. They wouldn't be ASD but some other condition due to that factor.

Possibly, although typically that is handled by adding a criterion that the condition not be better explained by some other disorder.

The whole thing is a bit of a mess really, and in your example, if a head injury does result in developmental issues, which is completely plausible, depending on what's affected, that's the sort of thing that PDD-NOS was for. You've got somebody that is from all practical perspectives autistic, but is atypical in some way. Hence why that was sometimes referred to as atypical autism. It's mostly useful for research purposes as the morality and practical considerations related to treatments and cures isn't quite the same as it would be for people who were naturally born to develop similar traits.

It's unfortunate that there was so much focus on the "over diagnosis problem" rather than on the misdiagnosis problem.
ProfessorJohn wrote:
And if we can later determine that it might lead to a whole new disorder, something like "Stress Induced Autism Spectrum Disorder', since the treatment for it would probably be different than for those who had been demonstrating Autism since birth

I think that's sort of what the whole "virtual autism" thing is like. And it is somewhat different in terms of it is something that can, and probably should be, cured. It's more or less social issues that come from inadequate exposure to other people at key developmental points.



AutisticBarbie
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01 Jun 2024, 8:49 pm

I would like to go before the DSM’s editing board and share the list I’m composing of traits (not ‘symptoms’) which need to be included in the next updated edition. Things like paradoxical traits such as +/- pain tolerance, +/- rate of speech, +/- novelty seeking, etc. How do we inform the powers that be?



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01 Jun 2024, 9:12 pm

Those are two schools of thought should be taken into account as well, thank you :wink: 8)



MatchboxVagabond
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01 Jun 2024, 10:09 pm

AutisticBarbie wrote:
I would like to go before the DSM’s editing board and share the list I’m composing of traits (not ‘symptoms’) which need to be included in the next updated edition. Things like paradoxical traits such as +/- pain tolerance, +/- rate of speech, +/- novelty seeking, etc. How do we inform the powers that be?

It's kind of a moot point now, seeing as they don't have finding for DSM 6.

But, I think they should have gone more along the lines of defining axis like on some of those questionnaire results would have made more sense.