Does anyone feel like the current DSM needs urgent updating?

[Anonymous]

I see a post on here literally every day where people are trying to work out what the f autism is. In these posts I see every single human trait used as autism dx evidence - from requiring time to decompress to emotion regulation challenges to having an overly vivid imagination to excessive interest in YouTube - I could go on. I see posts and TikToks all based on the premise that you can seem completely nt and still have asd. I see posts that claim all teachers, therapists and even siblings can fail to perceive autism. I’m NOT saying these individuals are not autistic - but as the mother of a kid who sits in a lot of gray areas and appears nt, the lack of clarity from the dsm - that leaves all of us completely perplexed. If autism can be so subtle that it does not require such impairment that it is evident at least to trained individuals and family that something is markedly awry then fine - great! But let’s make that clear across the board and shout it from the rooftops bc in that case a whole lot of ppl I know have it and we need to completely reframe the narrative.

[Anonymous]

I think the DSM has always kind of sucked and should be seen as primarily a tool for insurance companies. But as far as ASD goes, I sort of wish we still had an Asperger's diagnosis option. I get that he was a Nazi and that there are lots of other reasons for merging that and autism, but a lot of people who would have seen Asperger's in an individual wouldn't see "level 1 autism."

[Anonymous]

Yes. 100%.

[Anonymous]

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.

[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.

This x a thousand.
The argument that they all have things in common is not sufficient justification for grouping them all together. Not least bc as popular as that argument is the argument that no two autistic people are alike.
Dsm needs to find some really clear and specific shared criteria and create sub categories. Right now autism is just like - any human who isn’t that chilled out

[Anonymous]

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).

[Anonymous]

I wish there were more focus on the actual impairment for the diagnosis.

[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).

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.

[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).

Op - right - or mine who is not like that at all, but overreacts to things and is just super not easy going. But personality wise when not emotional or oppositional just seems like a nt kid

[Anonymous]

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).

Op - right - or mine who is not like that at all, but overreacts to things and is just super not easy going. But personality wise when not emotional or oppositional just seems like a nt kid

Mine is the flip side of that! extremely easy going, never overreacts to anything but when you're having a convo with him, he seems very "not NT". The less specialized someone's expertise is, the MORE they think my kids is ASD (other parents, teachers do; one counselor thought he likely was. But developmental pediatrician did not, neuropsych did not, school speech therapist does not, psychologist does not.....). I know if I sought 3 more neuropsych evals, and if I answered the parental survey 'just so', I could get him a ASD diagnosis. But I genuinely don't know if that's accurate for him. And I think the only reason I'd be getting it is to be able to post questions on DCUM or start teacher convos by saying "DS has adhd AND autism....."

Point is, all of this is so stupid.

[Anonymous]

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?

[Anonymous]

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.

I think there definitely is. There was an article in the post a few months ago describing that researches were seeing brain changes similar to those who have survived trauma. And no, I don't think it is due to masks. While they were annoying, I'm pretty sure it was the social isolation that did it. With treatment, these conditions are a result of the pandemic. True ASD kids were most likely having issues before, during, and after the pandemic.

[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.

I don’t see what is wrong with an autistic person saying they don’t want to be around somebody who randomly screams. Why should autistic people have to be okay with being around other autistic people?

[Anonymous]

I have a moderate autism kid.

Talks, but that's it.

I get really annoyed when people tell me their kid is autistic and is attending a normal school without a shadow.

[Anonymous]

Anonymous wrote:I have a moderate autism kid.

Talks, but that's it.

I get really annoyed when people tell me their kid is autistic and is attending a normal school without a shadow.

Why? I am no expert but I have substituted in a class specifically for level 1 autism kids and it’s very clear they need additional support but can also handle other classes and don’t need a shadow.