Sorry, that middle one s hard to read. The original is at
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=12&ved=2ahUKEwiypY-V--_jAhX6ITQIHXSnAH8QFjALegQIBRAB&url=https%3A%2F%2Fpediatrics.aappublications.org%2Fcontent%2Fpediatrics%2Fearly%2F2016%2F07%2F25%2Fpeds.2015-4256.full.pdf&usg=AOvVaw2KPPS-l04WfHft2T3TCsxk

(pdf)

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
Well, sometimes, but just to be clear -- physical exam findings in FASD do not correlate with the level of impairment. Some of the people most strongly affected do not have any physical signs of the exposure in utero.

Yes, I agree.

My point is that if a kid has facial features that lead all the doctors and teachers to know he's FAS, then he should be told. Because the situation where some people know you have something and you don't know it is terrible.

But, given that FASD can't be conclusively diagnosed in someone who doesn't have physical features, and doesn't have a documented history about of prenatal exposure, it makes much less sense to speculate. And since you can't know that someone in that case has FASD, or another disorder, because there is so much overlap, then it's probably safer to give them the diagnosis that carries less stigma, because stigma and low expectations for kids with FASD are a big problem.

Just to clarify -- do you mean that

1. FASD can only be diagnosed in people who has specific physical features, OR
2. that it can only be diagnosed in someone with a documented history of prenatal exposure, OR
3. that the person has to have both specific physical features and a documented history of prenatal exposure, OR
4. that the diagnosis requires at least one or the other, but not both, and not either one specifically?

My experience is doctors first look at physical features, then history, if known and then child's needs/concerns.

Ah. It might be helpful to know what diagnosticians are doing, rather than what it may just look like they are doing.

The standardized criteria for diagnosis require either documented prenatal exposure (plus other elements) OR specific clinical exam findings (plus other elements), OR both.

But of note, those physical exam findings might be subtle enough to easily be missed by the untrained eye. Also, some people with no physical exam findings may have more serious sequelae of in utero exposure to alcohol than people who are easily identified as having classic physical features for the disorder.

I think this might be helpful in understanding why people might be disagreeing with you here. Many people can be diagnosed with FASD but not be easily identified as such by laypeople, and some who virtually cannot be identified by eye may have severe problems from it.

---------------------

Updated Clinical Guidelines for Diagnosing Fetal Alcohol Spectrum Disorders
PEDIATRICS Volume 138, number 2, August 2016

(see next three posts)

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are no statistics that are reliable because reporting isn’t reliable and tests arent ethical. The reality is that kids with full blown FAS, only 20% are intellectually disabled as opposed to the 100% that are assumed to be. The diagnosis is so kids in stigma and unknowns it’s hard to know if it’s meaningful, not from all these junk scientists, and it’s not one I would seek for my child. Who on earth benefits?

There are several recent studies that have found the incidence to be between 1-5%. These studies came out after my pregnancies. And frankly, they're frightening.

Of course they are, although that’s much lower than the ASD rate. The point here is also / how does a diagnosis serve a bio child? Or any child? That has not been answered in any meaningful way.

In a short Google search, I came across numerous posts by adults with FAS who appreciate the self-knowledge and other posts or articles about adults parenting such children, as OP is. Labels can help. That's true for all sorts of diagnoses, including this one.

Yes, but this one is a double edged sword.

FAS is somewhat difference because it's got clear physical signs. Yes, if your kid is walking around with physical features that would make it clear to anyone who meets them that they had a mother who drank during pregnancy, then they deserve to know so they can respond.

But OP isn't talking about kids with FAS, she's talking about kids who don't have physical features. Where speculating about whether or not their disabilities are alcohol related is much less helpful.

Well, sometimes, but just to be clear -- physical exam findings in FASD do not correlate with the level of impairment. Some of the people most strongly affected do not have any physical signs of the exposure in utero.

Yes, I agree.

My point is that if a kid has facial features that lead all the doctors and teachers to know he's FAS, then he should be told. Because the situation where some people know you have something and you don't know it is terrible.

But, given that FASD can't be conclusively diagnosed in someone who doesn't have physical features, and doesn't have a documented history about of prenatal exposure, it makes much less sense to speculate. And since you can't know that someone in that case has FASD, or another disorder, because there is so much overlap, then it's probably safer to give them the diagnosis that carries less stigma, because stigma and low expectations for kids with FASD are a big problem.

Just to clarify -- do you mean that

1. FASD can only be diagnosed in people who has specific physical features, OR
2. that it can only be diagnosed in someone with a documented history of prenatal exposure, OR
3. that the person has to have both specific physical features and a documented history of prenatal exposure, OR
4. that the diagnosis requires at least one or the other, but not both, and not either one specifically?

FASD is an umbrella term that refers to kids with some kind of developmental issue that can be traced back to alcohol. FASD does not have clear diagnostic criteria at this time.

FAS is Fetal Alcohol Syndrome, the diagnostic criteria for FAS from the CDC are:

1. Specific physical features
2. Growth retardation of some sort
3. Either brain differences (e.g. on an MRI) or behavioral/developmental/cognitive differences

You can see them here: https://www.cdc.gov/ncbddd/fasd/diagnosis.html


ARND is a term that is used to describe those people who have FASD without meeting FAS criteria. There are no formal diagnostic criteria for ARND. However, generally doctors are not going to put that label (and thus the FASD label) on a kid unless there are either physical features or documentation of a history of alcohol abuse. If mom comes in, swears she didn't drink, and there's no physical evidence, then the kid will get a different diagnosis that explains their symptoms.

A individual kid with ARND might not have the physical features, or might have some but not all of the physical features. But their lack of physical features doesn't correlate with their developmental status. A kid can have ARND and significant intellectual disability, while another kid can have FAS with no intellectual disability.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are no statistics that are reliable because reporting isn’t reliable and tests arent ethical. The reality is that kids with full blown FAS, only 20% are intellectually disabled as opposed to the 100% that are assumed to be. The diagnosis is so kids in stigma and unknowns it’s hard to know if it’s meaningful, not from all these junk scientists, and it’s not one I would seek for my child. Who on earth benefits?

There are several recent studies that have found the incidence to be between 1-5%. These studies came out after my pregnancies. And frankly, they're frightening.

Of course they are, although that’s much lower than the ASD rate. The point here is also / how does a diagnosis serve a bio child? Or any child? That has not been answered in any meaningful way.

In a short Google search, I came across numerous posts by adults with FAS who appreciate the self-knowledge and other posts or articles about adults parenting such children, as OP is. Labels can help. That's true for all sorts of diagnoses, including this one.

FASD is not genetic. They can have kids and it will not pass on. ASD may or may not be genetic.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are no statistics that are reliable because reporting isn’t reliable and tests arent ethical. The reality is that kids with full blown FAS, only 20% are intellectually disabled as opposed to the 100% that are assumed to be. The diagnosis is so kids in stigma and unknowns it’s hard to know if it’s meaningful, not from all these junk scientists, and it’s not one I would seek for my child. Who on earth benefits?

There are several recent studies that have found the incidence to be between 1-5%. These studies came out after my pregnancies. And frankly, they're frightening.

Of course they are, although that’s much lower than the ASD rate. The point here is also / how does a diagnosis serve a bio child? Or any child? That has not been answered in any meaningful way.

In a short Google search, I came across numerous posts by adults with FAS who appreciate the self-knowledge and other posts or articles about adults parenting such children, as OP is. Labels can help. That's true for all sorts of diagnoses, including this one.

Yes, but this one is a double edged sword.

FAS is somewhat difference because it's got clear physical signs. Yes, if your kid is walking around with physical features that would make it clear to anyone who meets them that they had a mother who drank during pregnancy, then they deserve to know so they can respond.

But OP isn't talking about kids with FAS, she's talking about kids who don't have physical features. Where speculating about whether or not their disabilities are alcohol related is much less helpful.

Well, sometimes, but just to be clear -- physical exam findings in FASD do not correlate with the level of impairment. Some of the people most strongly affected do not have any physical signs of the exposure in utero.

Yes, I agree.

My point is that if a kid has facial features that lead all the doctors and teachers to know he's FAS, then he should be told. Because the situation where some people know you have something and you don't know it is terrible.

But, given that FASD can't be conclusively diagnosed in someone who doesn't have physical features, and doesn't have a documented history about of prenatal exposure, it makes much less sense to speculate. And since you can't know that someone in that case has FASD, or another disorder, because there is so much overlap, then it's probably safer to give them the diagnosis that carries less stigma, because stigma and low expectations for kids with FASD are a big problem.

Just to clarify -- do you mean that

1. FASD can only be diagnosed in people who has specific physical features, OR
2. that it can only be diagnosed in someone with a documented history of prenatal exposure, OR
3. that the person has to have both specific physical features and a documented history of prenatal exposure, OR
4. that the diagnosis requires at least one or the other, but not both, and not either one specifically?

My experience is doctors first look at physical features, then history, if known and then child's needs/concerns.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are no statistics that are reliable because reporting isn’t reliable and tests arent ethical. The reality is that kids with full blown FAS, only 20% are intellectually disabled as opposed to the 100% that are assumed to be. The diagnosis is so kids in stigma and unknowns it’s hard to know if it’s meaningful, not from all these junk scientists, and it’s not one I would seek for my child. Who on earth benefits?

There are several recent studies that have found the incidence to be between 1-5%. These studies came out after my pregnancies. And frankly, they're frightening.

Of course they are, although that’s much lower than the ASD rate. The point here is also / how does a diagnosis serve a bio child? Or any child? That has not been answered in any meaningful way.

In a short Google search, I came across numerous posts by adults with FAS who appreciate the self-knowledge and other posts or articles about adults parenting such children, as OP is. Labels can help. That's true for all sorts of diagnoses, including this one.

Yes, but this one is a double edged sword.

FAS is somewhat difference because it's got clear physical signs. Yes, if your kid is walking around with physical features that would make it clear to anyone who meets them that they had a mother who drank during pregnancy, then they deserve to know so they can respond.

But OP isn't talking about kids with FAS, she's talking about kids who don't have physical features. Where speculating about whether or not their disabilities are alcohol related is much less helpful.

Well, sometimes, but just to be clear -- physical exam findings in FASD do not correlate with the level of impairment. Some of the people most strongly affected do not have any physical signs of the exposure in utero.

Yes, I agree.

My point is that if a kid has facial features that lead all the doctors and teachers to know he's FAS, then he should be told. Because the situation where some people know you have something and you don't know it is terrible.

But, given that FASD can't be conclusively diagnosed in someone who doesn't have physical features, and doesn't have a documented history about of prenatal exposure, it makes much less sense to speculate. And since you can't know that someone in that case has FASD, or another disorder, because there is so much overlap, then it's probably safer to give them the diagnosis that carries less stigma, because stigma and low expectations for kids with FASD are a big problem.

Just to clarify -- do you mean that

1. FASD can only be diagnosed in people who has specific physical features, OR
2. that it can only be diagnosed in someone with a documented history of prenatal exposure, OR
3. that the person has to have both specific physical features and a documented history of prenatal exposure, OR
4. that the diagnosis requires at least one or the other, but not both, and not either one specifically?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are no statistics that are reliable because reporting isn’t reliable and tests arent ethical. The reality is that kids with full blown FAS, only 20% are intellectually disabled as opposed to the 100% that are assumed to be. The diagnosis is so kids in stigma and unknowns it’s hard to know if it’s meaningful, not from all these junk scientists, and it’s not one I would seek for my child. Who on earth benefits?

There are several recent studies that have found the incidence to be between 1-5%. These studies came out after my pregnancies. And frankly, they're frightening.

Of course they are, although that’s much lower than the ASD rate. The point here is also / how does a diagnosis serve a bio child? Or any child? That has not been answered in any meaningful way.

In a short Google search, I came across numerous posts by adults with FAS who appreciate the self-knowledge and other posts or articles about adults parenting such children, as OP is. Labels can help. That's true for all sorts of diagnoses, including this one.

Yes, but this one is a double edged sword.

FAS is somewhat difference because it's got clear physical signs. Yes, if your kid is walking around with physical features that would make it clear to anyone who meets them that they had a mother who drank during pregnancy, then they deserve to know so they can respond.

But OP isn't talking about kids with FAS, she's talking about kids who don't have physical features. Where speculating about whether or not their disabilities are alcohol related is much less helpful.

Well, sometimes, but just to be clear -- physical exam findings in FASD do not correlate with the level of impairment. Some of the people most strongly affected do not have any physical signs of the exposure in utero.

Yes, I agree.

My point is that if a kid has facial features that lead all the doctors and teachers to know he's FAS, then he should be told. Because the situation where some people know you have something and you don't know it is terrible.

But, given that FASD can't be conclusively diagnosed in someone who doesn't have physical features, and doesn't have a documented history about of prenatal exposure, it makes much less sense to speculate. And since you can't know that someone in that case has FASD, or another disorder, because there is so much overlap, then it's probably safer to give them the diagnosis that carries less stigma, because stigma and low expectations for kids with FASD are a big problem.

A few less formal studies have found incidence rates of 14% and up to 40% in certain populations. At that point, stigma and expectations will change.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are no statistics that are reliable because reporting isn’t reliable and tests arent ethical. The reality is that kids with full blown FAS, only 20% are intellectually disabled as opposed to the 100% that are assumed to be. The diagnosis is so kids in stigma and unknowns it’s hard to know if it’s meaningful, not from all these junk scientists, and it’s not one I would seek for my child. Who on earth benefits?

There are several recent studies that have found the incidence to be between 1-5%. These studies came out after my pregnancies. And frankly, they're frightening.

Of course they are, although that’s much lower than the ASD rate. The point here is also / how does a diagnosis serve a bio child? Or any child? That has not been answered in any meaningful way.

In a short Google search, I came across numerous posts by adults with FAS who appreciate the self-knowledge and other posts or articles about adults parenting such children, as OP is. Labels can help. That's true for all sorts of diagnoses, including this one.

Yes, but this one is a double edged sword.

FAS is somewhat difference because it's got clear physical signs. Yes, if your kid is walking around with physical features that would make it clear to anyone who meets them that they had a mother who drank during pregnancy, then they deserve to know so they can respond.

But OP isn't talking about kids with FAS, she's talking about kids who don't have physical features. Where speculating about whether or not their disabilities are alcohol related is much less helpful.

Well, sometimes, but just to be clear -- physical exam findings in FASD do not correlate with the level of impairment. Some of the people most strongly affected do not have any physical signs of the exposure in utero.

Yes, I agree.

My point is that if a kid has facial features that lead all the doctors and teachers to know he's FAS, then he should be told. Because the situation where some people know you have something and you don't know it is terrible.

But, given that FASD can't be conclusively diagnosed in someone who doesn't have physical features, and doesn't have a documented history about of prenatal exposure, it makes much less sense to speculate. And since you can't know that someone in that case has FASD, or another disorder, because there is so much overlap, then it's probably safer to give them the diagnosis that carries less stigma, because stigma and low expectations for kids with FASD are a big problem.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are no statistics that are reliable because reporting isn’t reliable and tests arent ethical. The reality is that kids with full blown FAS, only 20% are intellectually disabled as opposed to the 100% that are assumed to be. The diagnosis is so kids in stigma and unknowns it’s hard to know if it’s meaningful, not from all these junk scientists, and it’s not one I would seek for my child. Who on earth benefits?

There are several recent studies that have found the incidence to be between 1-5%. These studies came out after my pregnancies. And frankly, they're frightening.

Of course they are, although that’s much lower than the ASD rate. The point here is also / how does a diagnosis serve a bio child? Or any child? That has not been answered in any meaningful way.

In a short Google search, I came across numerous posts by adults with FAS who appreciate the self-knowledge and other posts or articles about adults parenting such children, as OP is. Labels can help. That's true for all sorts of diagnoses, including this one.

Yes, but this one is a double edged sword.

FAS is somewhat difference because it's got clear physical signs. Yes, if your kid is walking around with physical features that would make it clear to anyone who meets them that they had a mother who drank during pregnancy, then they deserve to know so they can respond.

But OP isn't talking about kids with FAS, she's talking about kids who don't have physical features. Where speculating about whether or not their disabilities are alcohol related is much less helpful.

Well, sometimes, but just to be clear -- physical exam findings in FASD do not correlate with the level of impairment. Some of the people most strongly affected do not have any physical signs of the exposure in utero.

Anonymous wrote:

Anonymous wrote:PP, 1-5% is much lower than 1%. There's a dash in it.

I am completely confused what you think that dash means. Generally 1 - 5 means that they don't know the exact number, but it's somewhere between 1 and 5. Like it could be 3%.

3% is not much less than 1%.

Are you imagining that 1 - 5 is the same as 1/5?

(I am so very sorry. It was just sarcastically spoken.)

Anonymous wrote:PP, 1-5% is much lower than 1%. There's a dash in it.

I am completely confused what you think that dash means. Generally 1 - 5 means that they don't know the exact number, but it's somewhere between 1 and 5. Like it could be 3%.

3% is not much less than 1%.

Are you imagining that 1 - 5 is the same as 1/5?

Anonymous wrote:PP, 1-5% is much lower than 1%. There's a dash in it.

Clarifying, recent studies have found the incidence of FASD to range from 1% to 4 or 5%, and possibly higher in sub populations.