Does anyone feel like the current DSM needs urgent updating?

[Anonymous]

Anonymous wrote:

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.

I’d be really annoyed about that too. Like somebody whose mom is being irritating should be very cautious about complaining about their mom to somebody whose mom has just passed away. Or somebody raising a child with easily managed depression should not complain about it to somebody raising a child who has had to be hospitalized several times for depression. You’re 100% justified in being annoyed.

I just don’t see what that has to do with the DSM.

The DSM is being used to diagnose 1 out of 10 boys in the USA with autism.

The kind of autism 10% of the world has is nothing like the disabling kind of autism where a child cannot function and at best will live in a group home as an adult.

Elon Musk would have been diagnosed with autism. So would Rain Man.

[Anonymous]

Pp- I don't see why there can't be levels 1,2,3. If a kid is in between two levels, call them a 1-2 or a 2-3

[Anonymous]

Keep in mind we all have symptoms of many major disorders. What makes them disorders is that they IMPAIR FUNCTIONING in usually more than one area. Nobody cares if you obsessively watch Tiktok and need downtime if you can handle your life. If the child is melting down at school./unable to keep up with assignments/not making friends and so forth and it is causing problems it moves into disorder land.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:Keep in mind we all have symptoms of many major disorders. What makes them disorders is that they IMPAIR FUNCTIONING in usually more than one area. Nobody cares if you obsessively watch Tiktok and need downtime if you can handle your life. If the child is melting down at school./unable to keep up with assignments/not making friends and so forth and it is causing problems it moves into disorder land.

Ahhhh but many people would in fact disagree with your position. If a child has certain behavioral traits, and as a result they are not making friends, does that mean they have a disorder? Really?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

I’d be really annoyed about that too. Like somebody whose mom is being irritating should be very cautious about complaining about their mom to somebody whose mom has just passed away. Or somebody raising a child with easily managed depression should not complain about it to somebody raising a child who has had to be hospitalized several times for depression. You’re 100% justified in being annoyed.

I just don’t see what that has to do with the DSM.

The DSM is being used to diagnose 1 out of 10 boys in the USA with autism.

The kind of autism 10% of the world has is nothing like the disabling kind of autism where a child cannot function and at best will live in a group home as an adult.

Elon Musk would have been diagnosed with autism. So would Rain Man.

I think you're saying that you think Elon Musk should have "Level 0" Autism or no autism diagnosis at all. I've never met him but I've heard (may or may not be accurate) that he doesn't have a house, sleeps on other people's couches, has had a variety of failed relationships and has poor relationships with his numerous children. He has money, yes, but that's not exactly the successful life that any of us envision for our children when they grow up, whether NT or Level 1 ASD or something else. Is that high functioning? Yes. Should he live in a group home? Quite possibly.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

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

[Anonymous]

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

[Anonymous]

I think if we weren’t so black and white about asd and embraced the idea you can have autistic traits without qualifying for a full dx - we would solve this issue completely

[Anonymous]

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.

[Anonymous]

Another for bring back Aspergers. I have one that is a classic case of Aspergers. When it came time for screening, my child did two things that are not natural to them but I taught them for years they must do. And they were turned down because of these two things. The icing on the cake was I was told if the term Aspergers still existed they would have given that but since it doesn't... Nothing.

[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.

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?