Does anyone feel like the current DSM needs urgent updating?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I understand that treatments for each level might be different, but based on my experiences with autistic people it really does seem like a spectrum. I know one kid who will close his eyes and rock back and forth as far as physically possible. He can hardly have a back and forth conversation, and laughs and talks to himself loudly at inappropriate times. He cannot come up with his own answers to assignments that require original sentences. Another autistic kid I know has back and forth conversations in some context, but not others (he can ask for clarification when receiving instructions, but in casual conversation either doesn't respond or responds with something completely off topic). He rocks back and forth in a less exaggerated manner with his eyes glazed over, and blurts out comments. Other kids just talk at me but can have reciprocal conversations with friends, just in a really off manner and don't ask follow-up questions, and they flap their hands at random moments.

Maybe these are just all level 1, but the first kid and the last kids I mentioned seem to have different levels of support needs.

Right but the behaviors you describe are not all that different. They all display perseveration and repetitive movements. I don’t think anyone is arguing about level of severity. I think what we’re saying is that ‘autism is a spectrum’ should not justify grouping people with virtually no symptoms in common together

But the difference in level 1, level 2, and level 3 is severity, and the way I am reading the comments in this thread, people seem to be suggesting level 1 should not be called autism. The last kids I mentioned are kids you’d say have “high functioning autism,” and people in the thread are saying that should be a separate category. Everybody diagnosed with autism, even level 1, has to have repetitive behaviors and communication deficits.

That’s not happening. My ds was dx with asd and he has no repetitive movements and no communication deficits. But he’s supposedly on this spectrum where he can have v little in common with most others on it. Feels like a cop out

Then the problem is misdiagnosis, not the DSM, if he was diagnosed without communication deficits, right?

[Anonymous]

Anonymous wrote:

Anonymous wrote:My kid is significantly disabled. This is different than a child who can pass as normal. It is very annoying when someone tells me their child is autistic so they need the same services I do.

Many children are challenging, but there has to be a point where you can say this child is special needs and this child is difficult. Difficult kids shouldn't need to get an autism diagnosis to get any help.

I mean are you a medical professional that can decide that those other kids don't need the service that your kid needs? I mean you don't get to decide that, and you don't get to be annoyed at everyone. I really don't understand what your problem is. You keep saying how you were annoyed at other parents, really you should just stay in your own yard and mind your business. Really.

You sound like a peach. Do you really not get the difference?

It's like someone with glasses claiming they need to learn braille.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My kid is significantly disabled. This is different than a child who can pass as normal. It is very annoying when someone tells me their child is autistic so they need the same services I do.

Many children are challenging, but there has to be a point where you can say this child is special needs and this child is difficult. Difficult kids shouldn't need to get an autism diagnosis to get any help.

I mean are you a medical professional that can decide that those other kids don't need the service that your kid needs? I mean you don't get to decide that, and you don't get to be annoyed at everyone. I really don't understand what your problem is. You keep saying how you were annoyed at other parents, really you should just stay in your own yard and mind your business. Really.

You sound like a peach. Do you really not get the difference?

It's like someone with glasses claiming they need to learn braille.

No, it's really not. For example, OT can be needed for both Level 1 and Level 3 kids. I'm really not sure what the concern is here. Is it just parents of Level 1 kids complaining to you directly about their kids or that there is a lack of services for your kid because the Level 1 kids are taking them up?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I understand that treatments for each level might be different, but based on my experiences with autistic people it really does seem like a spectrum. I know one kid who will close his eyes and rock back and forth as far as physically possible. He can hardly have a back and forth conversation, and laughs and talks to himself loudly at inappropriate times. He cannot come up with his own answers to assignments that require original sentences. Another autistic kid I know has back and forth conversations in some context, but not others (he can ask for clarification when receiving instructions, but in casual conversation either doesn't respond or responds with something completely off topic). He rocks back and forth in a less exaggerated manner with his eyes glazed over, and blurts out comments. Other kids just talk at me but can have reciprocal conversations with friends, just in a really off manner and don't ask follow-up questions, and they flap their hands at random moments.

Maybe these are just all level 1, but the first kid and the last kids I mentioned seem to have different levels of support needs.

The traits you are describing sound significantly more severe than the many, many parents who post on here about their HFA ASD kids - whose only "symptoms", for example, are sensitivity in large crowds, can make eye contact (but prefer not to), and have difficulty navigating social norms in casual chit chat. You are describing three kids with pretty clear autism symptoms, and in fact they all share symptoms with each other - but have varying levels of severity. You describe them as level 1, but given what my own level 1 kid looks like (and the other HFA ASD kids i see described here), i thought for sure you were describing Level 2 , if not level 3. The HFA ASD kids i see frequently described on this site are much milder than your descriptions, and share NO traits with the buckets you describe above.

That is the issue.

The only symptoms of the last group I mentioned were talking “at” me, having weird conversations with friends, and some of them flapping their hands every once in a while. Before I learned about level 1 autism I would have thought they were just a little weird. Except for that class, they are in regular classes and some do very well in school. And they aren’t in the same class as the kids I mentioned who have more severe autism; this is a class specifically for HFA.

I did pick out symptoms that were similar (rocking, rocking, and hand flapping) but from what I understand, where are many different behaviors that can be considered repetitive or restrictive. What is the hand flapping was instead constant repetitive and unusually hand movements? Is that the issue people are having? That the repetitive behaviors are different from rocking or hand flapping?

Also, I have been told on this website that DD received a misdiagnosis, but if I list *all* the symptoms, both the ones listed in the DSM and others associated with autism like having a meltdown with transitions, the diagnosis has never been questioned. So keep in mind that you cannot possibly know everything an evaluator knows and it’s more likely that an evaluator has the information to make an accurate diagnosis.

The information the evaluator has is the info in the dsm. That’s what we are saying is the issue.
If I created a disorder whose main ‘symptoms’ ranged from ‘a little difficult’ to ‘cannot communicate at all’ you’d think I was insane yet here we are.
If you break down why any human is annoying it comes down to doesn’t pick up social cues, isn’t easy going, cannot regulate feelings.’ But sometimes people just aren’t that cool - the prob w the dsm is you can literally get an asd dx based purely on subjective criteria

1. I cannot think if any psychiatric disorder that isn’t based on subjective criteria.

2. So the problem people have is the difference in severity, unlike what PP said?

Not so. Most psychiatric disorders are based on how you report you feel, or if you are so far gone you can’t self report then it’s usually bc you have either schitzophrenia or psychosis.
Autism is the only one w significant criteria based on whether others think you are inflexible, missing social cues etc

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I understand that treatments for each level might be different, but based on my experiences with autistic people it really does seem like a spectrum. I know one kid who will close his eyes and rock back and forth as far as physically possible. He can hardly have a back and forth conversation, and laughs and talks to himself loudly at inappropriate times. He cannot come up with his own answers to assignments that require original sentences. Another autistic kid I know has back and forth conversations in some context, but not others (he can ask for clarification when receiving instructions, but in casual conversation either doesn't respond or responds with something completely off topic). He rocks back and forth in a less exaggerated manner with his eyes glazed over, and blurts out comments. Other kids just talk at me but can have reciprocal conversations with friends, just in a really off manner and don't ask follow-up questions, and they flap their hands at random moments.

Maybe these are just all level 1, but the first kid and the last kids I mentioned seem to have different levels of support needs.

The traits you are describing sound significantly more severe than the many, many parents who post on here about their HFA ASD kids - whose only "symptoms", for example, are sensitivity in large crowds, can make eye contact (but prefer not to), and have difficulty navigating social norms in casual chit chat. You are describing three kids with pretty clear autism symptoms, and in fact they all share symptoms with each other - but have varying levels of severity. You describe them as level 1, but given what my own level 1 kid looks like (and the other HFA ASD kids i see described here), i thought for sure you were describing Level 2 , if not level 3. The HFA ASD kids i see frequently described on this site are much milder than your descriptions, and share NO traits with the buckets you describe above.

That is the issue.

The only symptoms of the last group I mentioned were talking “at” me, having weird conversations with friends, and some of them flapping their hands every once in a while. Before I learned about level 1 autism I would have thought they were just a little weird. Except for that class, they are in regular classes and some do very well in school. And they aren’t in the same class as the kids I mentioned who have more severe autism; this is a class specifically for HFA.

I did pick out symptoms that were similar (rocking, rocking, and hand flapping) but from what I understand, where are many different behaviors that can be considered repetitive or restrictive. What is the hand flapping was instead constant repetitive and unusually hand movements? Is that the issue people are having? That the repetitive behaviors are different from rocking or hand flapping?

Also, I have been told on this website that DD received a misdiagnosis, but if I list *all* the symptoms, both the ones listed in the DSM and others associated with autism like having a meltdown with transitions, the diagnosis has never been questioned. So keep in mind that you cannot possibly know everything an evaluator knows and it’s more likely that an evaluator has the information to make an accurate diagnosis.

The information the evaluator has is the info in the dsm. That’s what we are saying is the issue.
If I created a disorder whose main ‘symptoms’ ranged from ‘a little difficult’ to ‘cannot communicate at all’ you’d think I was insane yet here we are.
If you break down why any human is annoying it comes down to doesn’t pick up social cues, isn’t easy going, cannot regulate feelings.’ But sometimes people just aren’t that cool - the prob w the dsm is you can literally get an asd dx based purely on subjective criteria

1. I cannot think if any psychiatric disorder that isn’t based on subjective criteria.

2. So the problem people have is the difference in severity, unlike what PP said?

Not so. Most psychiatric disorders are based on how you report you feel, or if you are so far gone you can’t self report then it’s usually bc you have either schitzophrenia or psychosis.
Autism is the only one w significant criteria based on whether others think you are inflexible, missing social cues etc

But how you *feel* is subjective. It’s not like you take a blood test and they say “yep, this is depression!”

I was the first commenter who liked the Asperger’s category just because it’s more familiar, but I am having a hard time understanding exactly why others want to dispute what’s in the DSM. It doesn’t seem like there is a consensus at all. Level 1 and 3 don’t seem anything alike (isn’t that why there are levels?), people who claim label 1 autism take over the discourse (shame on them! But what does that have to do with the DSM?), they think the Dx an evaluator gave was wrong (okay but what does that have to do with the DSM?), they think the term autism is now meaningless (is it meaningless to those who have been diagnosed and can now get support? Meaningless how?), it pathologizes normal behavior (this just depends on how those who offer supports approach the deficits, but one big problem with our world is that you don’t get support for something until you pathologize it, and certain characteristics of autism offer a classic example of that)…

Anyways it seems very imperfect but except for bumping level 1 autism out of the Dx I don’t see a better solution (and even then when I was growing up Asperger’s was always explained to me as “mild autism” so it wasn’t a great surprise to me that they merged the diagnoses).

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My kid is significantly disabled. This is different than a child who can pass as normal. It is very annoying when someone tells me their child is autistic so they need the same services I do.

Many children are challenging, but there has to be a point where you can say this child is special needs and this child is difficult. Difficult kids shouldn't need to get an autism diagnosis to get any help.

I mean are you a medical professional that can decide that those other kids don't need the service that your kid needs? I mean you don't get to decide that, and you don't get to be annoyed at everyone. I really don't understand what your problem is. You keep saying how you were annoyed at other parents, really you should just stay in your own yard and mind your business. Really.

You sound like a peach. Do you really not get the difference?

It's like someone with glasses claiming they need to learn braille.

No, it's really not. For example, OT can be needed for both Level 1 and Level 3 kids. I'm really not sure what the concern is here. Is it just parents of Level 1 kids complaining to you directly about their kids or that there is a lack of services for your kid because the Level 1 kids are taking them up?

Ot can be needed for ADHD too.

A child who cannot be toilet trained.
A child who cannot speak.
A child who runs away

These kids are different.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I understand that treatments for each level might be different, but based on my experiences with autistic people it really does seem like a spectrum. I know one kid who will close his eyes and rock back and forth as far as physically possible. He can hardly have a back and forth conversation, and laughs and talks to himself loudly at inappropriate times. He cannot come up with his own answers to assignments that require original sentences. Another autistic kid I know has back and forth conversations in some context, but not others (he can ask for clarification when receiving instructions, but in casual conversation either doesn't respond or responds with something completely off topic). He rocks back and forth in a less exaggerated manner with his eyes glazed over, and blurts out comments. Other kids just talk at me but can have reciprocal conversations with friends, just in a really off manner and don't ask follow-up questions, and they flap their hands at random moments.

Maybe these are just all level 1, but the first kid and the last kids I mentioned seem to have different levels of support needs.

The traits you are describing sound significantly more severe than the many, many parents who post on here about their HFA ASD kids - whose only "symptoms", for example, are sensitivity in large crowds, can make eye contact (but prefer not to), and have difficulty navigating social norms in casual chit chat. You are describing three kids with pretty clear autism symptoms, and in fact they all share symptoms with each other - but have varying levels of severity. You describe them as level 1, but given what my own level 1 kid looks like (and the other HFA ASD kids i see described here), i thought for sure you were describing Level 2 , if not level 3. The HFA ASD kids i see frequently described on this site are much milder than your descriptions, and share NO traits with the buckets you describe above.

That is the issue.

The only symptoms of the last group I mentioned were talking “at” me, having weird conversations with friends, and some of them flapping their hands every once in a while. Before I learned about level 1 autism I would have thought they were just a little weird. Except for that class, they are in regular classes and some do very well in school. And they aren’t in the same class as the kids I mentioned who have more severe autism; this is a class specifically for HFA.

I did pick out symptoms that were similar (rocking, rocking, and hand flapping) but from what I understand, where are many different behaviors that can be considered repetitive or restrictive. What is the hand flapping was instead constant repetitive and unusually hand movements? Is that the issue people are having? That the repetitive behaviors are different from rocking or hand flapping?

Also, I have been told on this website that DD received a misdiagnosis, but if I list *all* the symptoms, both the ones listed in the DSM and others associated with autism like having a meltdown with transitions, the diagnosis has never been questioned. So keep in mind that you cannot possibly know everything an evaluator knows and it’s more likely that an evaluator has the information to make an accurate diagnosis.

The information the evaluator has is the info in the dsm. That’s what we are saying is the issue.
If I created a disorder whose main ‘symptoms’ ranged from ‘a little difficult’ to ‘cannot communicate at all’ you’d think I was insane yet here we are.
If you break down why any human is annoying it comes down to doesn’t pick up social cues, isn’t easy going, cannot regulate feelings.’ But sometimes people just aren’t that cool - the prob w the dsm is you can literally get an asd dx based purely on subjective criteria

1. I cannot think if any psychiatric disorder that isn’t based on subjective criteria.

2. So the problem people have is the difference in severity, unlike what PP said?

Not so. Most psychiatric disorders are based on how you report you feel, or if you are so far gone you can’t self report then it’s usually bc you have either schitzophrenia or psychosis.
Autism is the only one w significant criteria based on whether others think you are inflexible, missing social cues etc

But how you *feel* is subjective. It’s not like you take a blood test and they say “yep, this is depression!”

I was the first commenter who liked the Asperger’s category just because it’s more familiar, but I am having a hard time understanding exactly why others want to dispute what’s in the DSM. It doesn’t seem like there is a consensus at all. Level 1 and 3 don’t seem anything alike (isn’t that why there are levels?), people who claim label 1 autism take over the discourse (shame on them! But what does that have to do with the DSM?), they think the Dx an evaluator gave was wrong (okay but what does that have to do with the DSM?), they think the term autism is now meaningless (is it meaningless to those who have been diagnosed and can now get support? Meaningless how?), it pathologizes normal behavior (this just depends on how those who offer supports approach the deficits, but one big problem with our world is that you don’t get support for something until you pathologize it, and certain characteristics of autism offer a classic example of that)…

Anyways it seems very imperfect but except for bumping level 1 autism out of the Dx I don’t see a better solution (and even then when I was growing up Asperger’s was always explained to me as “mild autism” so it wasn’t a great surprise to me that they merged the diagnoses).

Bc we are saying the category is too broad leading to a. Misdiagnoses and b. Grouping people with wildly disparate issues together into one ‘bucket’ and saying it’s the same thing under the guise of ‘spectrum’ and we think the differences outweigh the similarities and thus evaluators need new more targeted criteria

[Anonymous]

Well...the OP asked if anyone thought the DSM needed 'urgent' updating, and it seems that the answer is no.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Many diseases, disorders and issues range from mild to severe/profound. I had a basal cancer cell removed. My father died of squamous skin cancer. Both are skin cancers but vastly different outcomes. Breast cancer is similar. My DC has very severe/profound dyslexia but I don’t get bent out of shape when someone whose child has mild dyslexia complains. I empathize with what they are experiencing. It is not a ‘I’ve got it worse contest’.

great you’re a perfect being! got any other helpful advice?

You’re so angry and abrasive. Do better.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Everyone can vent, but hopefully you understand why you shouldn’t cry loudly about your 6 week miscarriage to you friend who just had a 40-week stillbirth. Right? PP wasn’t saying you have no right to be sad or vent. She was explaining how she feels to be grouped with parents who have kids who are virtually NT.

Misery is not a contest to be won.

again that’s not the freakin’ point. the point was to understand PP’s POV when faced with parents complaining about their extremely high functioning kid.

O I'm the pp who is annoyed by parents with high functioning kids telling me their child is autistic.

I never said that they shouldn't say so, that was someone else. I personally find it annoying.

I liked the glasses to blind analogy. Imagine if in order to get any vision treatment, you had to qualify as blind.

Parents of children who really can't see would probably be really annoyed by people whose children have vision which is correctable by glasses complaining about being blind, and insisting there is no difference between a child who needs glasses and a child who will not be able to see no matter what.

Good thing no one is saying “there is no difference” then. That’s your own internal bias putting words in their mouths.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I understand that treatments for each level might be different, but based on my experiences with autistic people it really does seem like a spectrum. I know one kid who will close his eyes and rock back and forth as far as physically possible. He can hardly have a back and forth conversation, and laughs and talks to himself loudly at inappropriate times. He cannot come up with his own answers to assignments that require original sentences. Another autistic kid I know has back and forth conversations in some context, but not others (he can ask for clarification when receiving instructions, but in casual conversation either doesn't respond or responds with something completely off topic). He rocks back and forth in a less exaggerated manner with his eyes glazed over, and blurts out comments. Other kids just talk at me but can have reciprocal conversations with friends, just in a really off manner and don't ask follow-up questions, and they flap their hands at random moments.

Maybe these are just all level 1, but the first kid and the last kids I mentioned seem to have different levels of support needs.

Right but the behaviors you describe are not all that different. They all display perseveration and repetitive movements. I don’t think anyone is arguing about level of severity. I think what we’re saying is that ‘autism is a spectrum’ should not justify grouping people with virtually no symptoms in common together

But the difference in level 1, level 2, and level 3 is severity, and the way I am reading the comments in this thread, people seem to be suggesting level 1 should not be called autism. The last kids I mentioned are kids you’d say have “high functioning autism,” and people in the thread are saying that should be a separate category. Everybody diagnosed with autism, even level 1, has to have repetitive behaviors and communication deficits.

That’s not happening. My ds was dx with asd and he has no repetitive movements and no communication deficits. But he’s supposedly on this spectrum where he can have v little in common with most others on it. Feels like a cop out

I mean, A., you’re not clinically qualified to diagnose it as a “copout” and B., Stage I breast cancer and Stage IV pancreatic cancer are both cancer.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My kid is significantly disabled. This is different than a child who can pass as normal. It is very annoying when someone tells me their child is autistic so they need the same services I do.

Many children are challenging, but there has to be a point where you can say this child is special needs and this child is difficult. Difficult kids shouldn't need to get an autism diagnosis to get any help.

I mean are you a medical professional that can decide that those other kids don't need the service that your kid needs? I mean you don't get to decide that, and you don't get to be annoyed at everyone. I really don't understand what your problem is. You keep saying how you were annoyed at other parents, really you should just stay in your own yard and mind your business. Really.

You sound like a peach. Do you really not get the difference?

It's like someone with glasses claiming they need to learn braille.

No, it isn’t.

[Anonymous]

I mean, autistic people experience the world differently than NT people but similarly to eachother. Makes sense as a single disorder to me. Just because autism is more disabling to some people than to others doesn't mean it's a different "kind" of autism. It's not like we say that people with mild ADHD and severe ADHD (or anxiety, or whatever) should have totally different disgnoses-- one's daily life may be a lot more affected than the other, but their brains have a lot in common.

[Anonymous]

Anonymous wrote:I mean, autistic people experience the world differently than NT people but similarly to eachother. Makes sense as a single disorder to me. Just because autism is more disabling to some people than to others doesn't mean it's a different "kind" of autism. It's not like we say that people with mild ADHD and severe ADHD (or anxiety, or whatever) should have totally different disgnoses-- one's daily life may be a lot more affected than the other, but their brains have a lot in common.

Right but what were saying is that they don’t bc the category has been too broadly defined

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My kid is significantly disabled. This is different than a child who can pass as normal. It is very annoying when someone tells me their child is autistic so they need the same services I do.

Many children are challenging, but there has to be a point where you can say this child is special needs and this child is difficult. Difficult kids shouldn't need to get an autism diagnosis to get any help.

I mean are you a medical professional that can decide that those other kids don't need the service that your kid needs? I mean you don't get to decide that, and you don't get to be annoyed at everyone. I really don't understand what your problem is. You keep saying how you were annoyed at other parents, really you should just stay in your own yard and mind your business. Really.

You sound like a peach. Do you really not get the difference?

It's like someone with glasses claiming they need to learn braille.

No, it isn’t.

Okay, you can keep your autism diagnosis, since it feeds you emotionally, and that poster can continue being annoyed at you complaining about your autistic child who goes to a normal school and needs some support, while that posters child needs a full time aide