Does anyone feel like the current DSM needs urgent updating?

[Anonymous]

Okay. Now I'm really confused. I thought the global developmental delay IS the autism as it is manifested. You're saying that autism is a different thing that causes these problems?

[Anonymous]

Anonymous wrote:Okay. Now I'm really confused. I thought the global developmental delay IS the autism as it is manifested. You're saying that autism is a different thing that causes these problems?

Diagnostic substitution. It's what the pp is really complaining about

[Anonymous]

Anonymous wrote:

Anonymous wrote:I feel like a lot of people are also overlooking intellectual disability here. Like yeah, of course an autistic person with an intellectual disability is going to be very different and have a very different life than one without an intellectual disability. Not that all non-speaking autistic people have intellectual disabilities-- many have normal or high intelligence too-- but it's just weird to ignore intellectual differences and act ljke it's the fault of the autism diagnosis not to capture it.

Of course it’s the “fault” of the diagnosis. The diagnosis is a human-created category that is supposed to be useful.

What do you mean? Do you hold every other diagnosis to this standard too? Like, if there are huge differences between an intellectualy disabled person with depression or ADHD or whatever, and a person of average or high intelligence with those conditions, do you see that as a problem with the diagnostic criteria for depression or ADHD? I would hope not.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I feel like a lot of people are also overlooking intellectual disability here. Like yeah, of course an autistic person with an intellectual disability is going to be very different and have a very different life than one without an intellectual disability. Not that all non-speaking autistic people have intellectual disabilities-- many have normal or high intelligence too-- but it's just weird to ignore intellectual differences and act ljke it's the fault of the autism diagnosis not to capture it.

Of course it’s the “fault” of the diagnosis. The diagnosis is a human-created category that is supposed to be useful.

What do you mean? Do you hold every other diagnosis to this standard too? Like, if there are huge differences between an intellectualy disabled person with depression or ADHD or whatever, and a person of average or high intelligence with those conditions, do you see that as a problem with the diagnostic criteria for depression or ADHD? I would hope not.

Diagnoses should be specific otherwise they are useless.

As I said earlier, there are kids in my circle diagnosed with "autism" even though they really have genetic conditions like CDLs. The truth is if you are severely disabled enough you will tick the boxes for an ASD diagnosis.


Previous versions of the DSM had something like the phrase "if not explained by other conditions like intellectual disability or other conditions."

This DSM is a massive failure.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I feel like a lot of people are also overlooking intellectual disability here. Like yeah, of course an autistic person with an intellectual disability is going to be very different and have a very different life than one without an intellectual disability. Not that all non-speaking autistic people have intellectual disabilities-- many have normal or high intelligence too-- but it's just weird to ignore intellectual differences and act ljke it's the fault of the autism diagnosis not to capture it.

Of course it’s the “fault” of the diagnosis. The diagnosis is a human-created category that is supposed to be useful.

What do you mean? Do you hold every other diagnosis to this standard too? Like, if there are huge differences between an intellectualy disabled person with depression or ADHD or whatever, and a person of average or high intelligence with those conditions, do you see that as a problem with the diagnostic criteria for depression or ADHD? I would hope not.

No. As pp had said the diagnostic criteria should be clear - that’s all.
The diagnostic criteria for asd is not clear. In part in my opinion bc persistent social deficits is subjective.
For example a pp who said their kid masks and does fine at school then gets aggressive in the car. Is that a ‘persistent social deficit’? Depends on who you ask. Should be much clearer than that
That is not to say pp kid does not have an important challenge to solve. But we shouldn’t be confused as to whether it is or is not autism. Just feels v random

[Anonymous]

The dsm is hugely influenced by big business and the providers. It takes years to change and lots of vested money interests involved. But heck yea it has so much wrong with it. But major uphill fights to change.

[Anonymous]

Anonymous wrote:The dsm is hugely influenced by big business and the providers. It takes years to change and lots of vested money interests involved. But heck yea it has so much wrong with it. But major uphill fights to change.

How so? That sounds like a v effed up situation

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I feel like a lot of people are also overlooking intellectual disability here. Like yeah, of course an autistic person with an intellectual disability is going to be very different and have a very different life than one without an intellectual disability. Not that all non-speaking autistic people have intellectual disabilities-- many have normal or high intelligence too-- but it's just weird to ignore intellectual differences and act ljke it's the fault of the autism diagnosis not to capture it.

Of course it’s the “fault” of the diagnosis. The diagnosis is a human-created category that is supposed to be useful.

What do you mean? Do you hold every other diagnosis to this standard too? Like, if there are huge differences between an intellectualy disabled person with depression or ADHD or whatever, and a person of average or high intelligence with those conditions, do you see that as a problem with the diagnostic criteria for depression or ADHD? I would hope not.

No. As pp had said the diagnostic criteria should be clear - that’s all.
The diagnostic criteria for asd is not clear. In part in my opinion bc persistent social deficits is subjective.
For example a pp who said their kid masks and does fine at school then gets aggressive in the car. Is that a ‘persistent social deficit’? Depends on who you ask. Should be much clearer than that
That is not to say pp kid does not have an important challenge to solve. But we shouldn’t be confused as to whether it is or is not autism. Just feels v random

I'm that PP. My dc has a clear ASD dx and that has been confirmed by multiple professionals, in fact no one has ever doubted it.
I used the example of dc getting aggressive in the car, due to the schedule change during the holidays. So, dc's ridgidity is impacting their life-it's not typical to have multiple, dangerous and aggressive meltdowns because of a schedule change.

My dc works very hard to mask at school (and is mostly but not always successful at this), but they're also in a small, one class per grade school. I don't know how they'd do if they were dealing with the social and sensory issues if they went to a large public school.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I feel like a lot of people are also overlooking intellectual disability here. Like yeah, of course an autistic person with an intellectual disability is going to be very different and have a very different life than one without an intellectual disability. Not that all non-speaking autistic people have intellectual disabilities-- many have normal or high intelligence too-- but it's just weird to ignore intellectual differences and act ljke it's the fault of the autism diagnosis not to capture it.

Of course it’s the “fault” of the diagnosis. The diagnosis is a human-created category that is supposed to be useful.

What do you mean? Do you hold every other diagnosis to this standard too? Like, if there are huge differences between an intellectualy disabled person with depression or ADHD or whatever, and a person of average or high intelligence with those conditions, do you see that as a problem with the diagnostic criteria for depression or ADHD? I would hope not.

Diagnoses should be specific otherwise they are useless.

As I said earlier, there are kids in my circle diagnosed with "autism" even though they really have genetic conditions like CDLs. The truth is if you are severely disabled enough you will tick the boxes for an ASD diagnosis.


Previous versions of the DSM had something like the phrase "if not explained by other conditions like intellectual disability or other conditions."

This DSM is a massive failure.

I always thought this was interesting. I have a friend whose child suffered a significant birth injury (essentially a large part of his brain is dead). He was diagnosed with CP and ASD. But why isn't it the brain injury creating the ASD. Do we know this for sure? Other people with ASD don't have a brain injury. It just seems really different than my nephew who had a typical birth, brain scans are normal but is also unable to speak (and has clear characteristics of autism level 3)

[Anonymous]

Anonymous wrote:It bothers me because I feel like lately the self-diagnosed or late-diagnosed people, especially teens and people in their early 20s, are monopolizing the conversation. People who were able to access the mainstream curriculum in schools, who are verbal/speaking, who maybe have some deficits in communication and/or “restricted interests,” but who are able to live a pretty “normal” life. And then people who have more severe symptoms, higher support needs, who were diagnosed at an early age, are non -speaking, have outbursts/tantrums etc. are overlooked. I mean I see these people who are like, I can’t deal with loud noises/outbursts in public because of my autism … but my DS who is now 4 and who was diagnosed with autism at 2 is prone to randomly yelping and screaming in public just because that’s something he does … so these people are autistic out here saying they can’t stand other autistic people? It doesn’t sit right with me or with a lot of other parents of higher support needs kids.

80% of adults who are identified with Autism have either attempted suicide, engaged in self-harm or experienced other severe mental illness. I agree that there should be different terms, but as a mother of a nine year old girl who was a rock star masker until she landed in the hospital four times in one year from the overload required by constant masking. I think you are misunderstanding the gravity of what people incorrectly refer to as "high functioning autism."

[Anonymous]

Anonymous wrote:

Anonymous wrote:It bothers me because I feel like lately the self-diagnosed or late-diagnosed people, especially teens and people in their early 20s, are monopolizing the conversation. People who were able to access the mainstream curriculum in schools, who are verbal/speaking, who maybe have some deficits in communication and/or “restricted interests,” but who are able to live a pretty “normal” life. And then people who have more severe symptoms, higher support needs, who were diagnosed at an early age, are non -speaking, have outbursts/tantrums etc. are overlooked. I mean I see these people who are like, I can’t deal with loud noises/outbursts in public because of my autism … but my DS who is now 4 and who was diagnosed with autism at 2 is prone to randomly yelping and screaming in public just because that’s something he does … so these people are autistic out here saying they can’t stand other autistic people? It doesn’t sit right with me or with a lot of other parents of higher support needs kids.

80% of adults who are identified with Autism have either attempted suicide, engaged in self-harm or experienced other severe mental illness. I agree that there should be different terms, but as a mother of a nine year old girl who was a rock star masker until she landed in the hospital four times in one year from the overload required by constant masking. I think you are misunderstanding the gravity of what people incorrectly refer to as "high functioning autism."

This post is a bit nebulous. Do you have a reference for that statistic? (seems really high unless... is this 80% of "high functioning" (how is that defined)? Severe mental illness because of *masking* or because of natural occurring comorbidities (because that would not really be a counter to the PP...)? does "self-harm" include the kind of self harm that severe autistic persons often engage in (again... not really a counter to the PP if that's the case)?

[Anonymous]

Anonymous wrote:Yup, OP, I am totally with you. Wish we could get the Aspergers diagnosis back - give it a new name if you must!

We have a kid without an ASD diagnosis. But outwardly seems super Aspergers. The whole thing is just so useless now.

Even if we got an ASD diagnosis, I don't understand how that is useful at all - to provide that information to teachers or friends. Because ASD is so meaninglessly broad.

I also recognize the absurd focus on diagnosing basically 1 out of every 10 boys as ASD - essentially, every quicky, socially challenged, math loving boy, of which there's one in every class - is incredibly distracting to real issue of what we think of as traditional autism. Those are the kids who need tremendous help and resources, and research.

I also hate that we've pathologized boys being socially quirky and into math. Why does that require a diagnosis?? Why isn't that just a personality type? (which incidentally, is the "diagnosis" DS got after a neuropsych. She said sometimes it's okay to just label his social oddities as personality, when they don't otherwise meet the full ASD diagnosis).

Can I ask who did your neuropsych? I like them already

[Anonymous]

Anonymous wrote:

Anonymous wrote:Its like making Blind cover people who need glasses. It makes no sense, and it's really annoying to people whose kids can't see.

This is it. Blind. Near-sighted. Far-sighted. Needs reading glasses once over 50. Glasses only when driving.

We don't describe everyone under one sight abled spectrum umbrella.

Thank you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Yup, OP, I am totally with you. Wish we could get the Aspergers diagnosis back - give it a new name if you must!

We have a kid without an ASD diagnosis. But outwardly seems super Aspergers. The whole thing is just so useless now.

Even if we got an ASD diagnosis, I don't understand how that is useful at all - to provide that information to teachers or friends. Because ASD is so meaninglessly broad.

I also recognize the absurd focus on diagnosing basically 1 out of every 10 boys as ASD - essentially, every quicky, socially challenged, math loving boy, of which there's one in every class - is incredibly distracting to real issue of what we think of as traditional autism. Those are the kids who need tremendous help and resources, and research.

I also hate that we've pathologized boys being socially quirky and into math. Why does that require a diagnosis?? Why isn't that just a personality type? (which incidentally, is the "diagnosis" DS got after a neuropsych. She said sometimes it's okay to just label his social oddities as personality, when they don't otherwise meet the full ASD diagnosis).

I also agree about the need for a specific category for those who need the most support.

I have an older teen who does not have a diagnosis. He also has a quirky personality, but before the pandemic, an ASD diagnosis had not entered my mind. However, since the pandemic, he has been exhibiting characteristics strongly consistent with A.1-A.3 of the DSM (less so with the B categories). I have been wondering whether, for some younger people, pandemic isolation has caused profound personality changes so that, while not exactly meeting the criteria for ASD, they need similar supports to address social and communication deficits.

DS is 11 and goes to a big magnet public gifted school (not in the DC area). We'd always heard it would likely be a better fit for DS and his social issues - that there would be more kids like him there and those who weren't like him would be less likely to bully him. At the first parent welcome coffee, the guidance counselor straight up said we have a lot of kids that verge into the ASD spectrum (when discussing social skills supports for the general school population). So it's been that way for a while. But I was chatting with the teacher supervisor of the new robotics club, and he said something along the lines of "all 30 kids in this robotics club are, while maybe not as severe as DS, definitely in that space of socially challenged" and he went on to question what the heck was happening in the last year or so. But interesting, our school system is in the south and was fully open by fall 2020 (with mandatory masks, and about 25% who homeschooled for at least part of that first year). But point is, they weren't isolated to the same extent as up north. Could masks alone be triggering something major on the social front for these kids?

omg, masks didn't harm your kid but maybe you should look into the after effects of having Covid. especially several times.

[Anonymous]

The biggest differences between Asperger’s and ASD used to be age of onset and deficit areas.

When you combine 2 things (as they did by making Asperger’s into ASD Level 1) that don’t really look the same you end up with something that means nothing.

These are from the old DSM-IV for Asperger’s, and certainly don’t fit the “traditional criteria” for ASD. I still can’t figure out why they combined these once very distinct diagnoses (besides insurance money):

There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, or adaptive
behavior (other than social interaction and curiosity about the environment in childhood).