Is ASD a useful label or is it we don’t know we will lump it under an umbrella term?

[Anonymous]

Anonymous wrote:So 1 in 6 that’s basically everybody

+1

Variation of normal.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:


I am saying they are calling everything ASD these days. You do know that many (most) ASD children have an intellectual disability, right. Not all ASD is high functioning.

Umm, no. One in 59 of kids are diagnosed with ASD, but 1 in 6 have some kind of developmental disability,
https://www.cdc.gov/ncbddd/autism/data.html

So 90% of kids diagnosed with a developmental disability don't have autism. How is that "everything."

1 in 6 kids total or 1 in 6 with ASD?

1 in 6 of all children have a developmental disability. 1 in 59 of all children have ASD.

Where are they getting these numbers from? Actual parents and doctors or the schools who very loosely use educational diagnosis?

The CDC has a complex methodology that reviews case files. It's explained at one the links at the URL above. And on developmental disabilities generally, you can see more here
https://www.cdc.gov/ncbddd/developmentaldisabilities/research.html

I didn't read it that carefully but it looked like these are targeted studies looking for specific data and outcomes and not inclusive of entire populations. It wasn't clear in less I missed it where they got the case files from.

I am not sure why targeted studies bother you, but here's autism data from a general parent survey. It gives a higher prevalence of 1 in 40, but I think that may not be so accurate, since it asks parents if any doctor or health professional ever said your kid has autism. There are cases where autism was suspected, but later ruled out, but parents still could say yes to the question.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833544/

The studies are fine but reality is most studies are looking to confirm their topic/hypothesis and usually do so. I'm on a new medication, as a good example and most of us were told its safe, few side effects and well studied and many of us (via online) are having serious side effects. Studies don't always tell the entire story as for these drugs they didn't check using them with other medical conditions and other things.

Given the ASD diagnosis has broadened and become more inclusive, we are going to have a higher percentage. Reality is kids who have severe issues, it doesn't really matter what you call it as they need services and their families need supports and if calling it ASD gets them the help they need, I fully support it. Where it gets hard is kids who are very minimally impacted or grow out of it, who are the kids most people see as they are not in the special education classes and can participate in regular activities, are also called ASD so its very deceiving to many and confusing to those not having a SN child as many don't understand the "spectrum" and the broad term really isn't useful to anyone. When doctors see an ASD label, which we cannot get removed, they walk in with automatic assumptions about my child then in front of my child have a discussion about getting it removed (which I've tried but only the original doctor can and they are no longer there) and it really freaks out my child (talk to me privately about it). There are a lot of unintended consequences for misdiagnosis and those are the ones most of us are talking about at both ends of the spectrum - the minimally impacted and the severely impacted. Most parents on here have kids in the middle where it is clear its ASD and its a non-issue and the question is how best can they help their child be the most successful person they can be.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:


I am saying they are calling everything ASD these days. You do know that many (most) ASD children have an intellectual disability, right. Not all ASD is high functioning.

Umm, no. One in 59 of kids are diagnosed with ASD, but 1 in 6 have some kind of developmental disability,
https://www.cdc.gov/ncbddd/autism/data.html

So 90% of kids diagnosed with a developmental disability don't have autism. How is that "everything."

1 in 6 kids total or 1 in 6 with ASD?

1 in 6 of all children have a developmental disability. 1 in 59 of all children have ASD.

Where are they getting these numbers from? Actual parents and doctors or the schools who very loosely use educational diagnosis?

The CDC has a complex methodology that reviews case files. It's explained at one the links at the URL above. And on developmental disabilities generally, you can see more here
https://www.cdc.gov/ncbddd/developmentaldisabilities/research.html

I didn't read it that carefully but it looked like these are targeted studies looking for specific data and outcomes and not inclusive of entire populations. It wasn't clear in less I missed it where they got the case files from.

I am not sure why targeted studies bother you, but here's autism data from a general parent survey. It gives a higher prevalence of 1 in 40, but I think that may not be so accurate, since it asks parents if any doctor or health professional ever said your kid has autism. There are cases where autism was suspected, but later ruled out, but parents still could say yes to the question.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833544/

The studies are fine but reality is most studies are looking to confirm their topic/hypothesis and usually do so. I'm on a new medication, as a good example and most of us were told its safe, few side effects and well studied and many of us (via online) are having serious side effects. Studies don't always tell the entire story as for these drugs they didn't check using them with other medical conditions and other things.

Given the ASD diagnosis has broadened and become more inclusive, we are going to have a higher percentage. Reality is kids who have severe issues, it doesn't really matter what you call it as they need services and their families need supports and if calling it ASD gets them the help they need, I fully support it. Where it gets hard is kids who are very minimally impacted or grow out of it, who are the kids most people see as they are not in the special education classes and can participate in regular activities, are also called ASD so its very deceiving to many and confusing to those not having a SN child as many don't understand the "spectrum" and the broad term really isn't useful to anyone. When doctors see an ASD label, which we cannot get removed, they walk in with automatic assumptions about my child then in front of my child have a discussion about getting it removed (which I've tried but only the original doctor can and they are no longer there) and it really freaks out my child (talk to me privately about it). There are a lot of unintended consequences for misdiagnosis and those are the ones most of us are talking about at both ends of the spectrum - the minimally impacted and the severely impacted. Most parents on here have kids in the middle where it is clear its ASD and its a non-issue and the question is how best can they help their child be the most successful person they can be.

You are just looking to confirm your own hypothesis, whatever that is. I'd wish you luck with that, but you don't really need it, since I am sure you confirm whatever you already thought, regardless of what information is presented to you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:So 1 in 6 that’s basically everybody

+1

Variation of normal.

You can call it whatever you want, but if your kid is having a problem, even if it's mild, you'll probably want to do something about it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:So 1 in 6 that’s basically everybody

+1

Variation of normal.

You can call it whatever you want, but if your kid is having a problem, even if it's mild, you'll probably want to do something about it.

Not everyone wants to do something about it. Most of us on this board do and spend a lot of time and money but I know several kids who have pretty serious needs and parents have blown them off or just rely on the school system which isn't doing much.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:So 1 in 6 that’s basically everybody

+1

Variation of normal.

You can call it whatever you want, but if your kid is having a problem, even if it's mild, you'll probably want to do something about it.

Not everyone wants to do something about it. Most of us on this board do and spend a lot of time and money but I know several kids who have pretty serious needs and parents have blown them off or just rely on the school system which isn't doing much.

Well I guess since 'basically everybody" has a developmental disability which is always called autism to get more money it doesn't really matter then. I guess that's what PPs are really saying. Sad, really.

[Anonymous]

1 in 6. Of EVERY child has a disability? I don’t believe it

[Anonymous]

Anonymous wrote:1 in 6. Of EVERY child has a disability? I don’t believe it

Well that's what the statistic is, your incredulity not withstanding.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:


I am saying they are calling everything ASD these days. You do know that many (most) ASD children have an intellectual disability, right. Not all ASD is high functioning.

Umm, no. One in 59 of kids are diagnosed with ASD, but 1 in 6 have some kind of developmental disability,
https://www.cdc.gov/ncbddd/autism/data.html

So 90% of kids diagnosed with a developmental disability don't have autism. How is that "everything."

1 in 6 kids total or 1 in 6 with ASD?

1 in 6 of all children have a developmental disability. 1 in 59 of all children have ASD.

Where are they getting these numbers from? Actual parents and doctors or the schools who very loosely use educational diagnosis?

The CDC has a complex methodology that reviews case files. It's explained at one the links at the URL above. And on developmental disabilities generally, you can see more here
https://www.cdc.gov/ncbddd/developmentaldisabilities/research.html

I didn't read it that carefully but it looked like these are targeted studies looking for specific data and outcomes and not inclusive of entire populations. It wasn't clear in less I missed it where they got the case files from.

I am not sure why targeted studies bother you, but here's autism data from a general parent survey. It gives a higher prevalence of 1 in 40, but I think that may not be so accurate, since it asks parents if any doctor or health professional ever said your kid has autism. There are cases where autism was suspected, but later ruled out, but parents still could say yes to the question.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833544/

The studies are fine but reality is most studies are looking to confirm their topic/hypothesis and usually do so. I'm on a new medication, as a good example and most of us were told its safe, few side effects and well studied and many of us (via online) are having serious side effects. Studies don't always tell the entire story as for these drugs they didn't check using them with other medical conditions and other things.

Given the ASD diagnosis has broadened and become more inclusive, we are going to have a higher percentage. Reality is kids who have severe issues, it doesn't really matter what you call it as they need services and their families need supports and if calling it ASD gets them the help they need, I fully support it. Where it gets hard is kids who are very minimally impacted or grow out of it, who are the kids most people see as they are not in the special education classes and can participate in regular activities, are also called ASD so its very deceiving to many and confusing to those not having a SN child as many don't understand the "spectrum" and the broad term really isn't useful to anyone. When doctors see an ASD label, which we cannot get removed, they walk in with automatic assumptions about my child then in front of my child have a discussion about getting it removed (which I've tried but only the original doctor can and they are no longer there) and it really freaks out my child (talk to me privately about it). There are a lot of unintended consequences for misdiagnosis and those are the ones most of us are talking about at both ends of the spectrum - the minimally impacted and the severely impacted. Most parents on here have kids in the middle where it is clear its ASD and its a non-issue and the question is how best can they help their child be the most successful person they can be.

What assumptions do the doctors’ have? The “only assumption” we’ve seen for DS with ASD/Asperger’s is that he has issues with social pragmatics which he has.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:


I am saying they are calling everything ASD these days. You do know that many (most) ASD children have an intellectual disability, right. Not all ASD is high functioning.

Umm, no. One in 59 of kids are diagnosed with ASD, but 1 in 6 have some kind of developmental disability,
https://www.cdc.gov/ncbddd/autism/data.html

So 90% of kids diagnosed with a developmental disability don't have autism. How is that "everything."

1 in 6 kids total or 1 in 6 with ASD?

1 in 6 of all children have a developmental disability. 1 in 59 of all children have ASD.

Where are they getting these numbers from? Actual parents and doctors or the schools who very loosely use educational diagnosis?

The CDC has a complex methodology that reviews case files. It's explained at one the links at the URL above. And on developmental disabilities generally, you can see more here
https://www.cdc.gov/ncbddd/developmentaldisabilities/research.html

I didn't read it that carefully but it looked like these are targeted studies looking for specific data and outcomes and not inclusive of entire populations. It wasn't clear in less I missed it where they got the case files from.

I am not sure why targeted studies bother you, but here's autism data from a general parent survey. It gives a higher prevalence of 1 in 40, but I think that may not be so accurate, since it asks parents if any doctor or health professional ever said your kid has autism. There are cases where autism was suspected, but later ruled out, but parents still could say yes to the question.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833544/

The studies are fine but reality is most studies are looking to confirm their topic/hypothesis and usually do so. I'm on a new medication, as a good example and most of us were told its safe, few side effects and well studied and many of us (via online) are having serious side effects. Studies don't always tell the entire story as for these drugs they didn't check using them with other medical conditions and other things.

Given the ASD diagnosis has broadened and become more inclusive, we are going to have a higher percentage. Reality is kids who have severe issues, it doesn't really matter what you call it as they need services and their families need supports and if calling it ASD gets them the help they need, I fully support it. Where it gets hard is kids who are very minimally impacted or grow out of it, who are the kids most people see as they are not in the special education classes and can participate in regular activities, are also called ASD so its very deceiving to many and confusing to those not having a SN child as many don't understand the "spectrum" and the broad term really isn't useful to anyone. When doctors see an ASD label, which we cannot get removed, they walk in with automatic assumptions about my child then in front of my child have a discussion about getting it removed (which I've tried but only the original doctor can and they are no longer there) and it really freaks out my child (talk to me privately about it). There are a lot of unintended consequences for misdiagnosis and those are the ones most of us are talking about at both ends of the spectrum - the minimally impacted and the severely impacted. Most parents on here have kids in the middle where it is clear its ASD and its a non-issue and the question is how best can they help their child be the most successful person they can be.

What assumptions do the doctors’ have? The “only assumption” we’ve seen for DS with ASD/Asperger’s is that he has issues with social pragmatics which he has.

+1
I've never seen a doctor make any assumptions about my kid.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:


I am saying they are calling everything ASD these days. You do know that many (most) ASD children have an intellectual disability, right. Not all ASD is high functioning.

Umm, no. One in 59 of kids are diagnosed with ASD, but 1 in 6 have some kind of developmental disability,
https://www.cdc.gov/ncbddd/autism/data.html

So 90% of kids diagnosed with a developmental disability don't have autism. How is that "everything."

1 in 6 kids total or 1 in 6 with ASD?

1 in 6 of all children have a developmental disability. 1 in 59 of all children have ASD.

Where are they getting these numbers from? Actual parents and doctors or the schools who very loosely use educational diagnosis?

The CDC has a complex methodology that reviews case files. It's explained at one the links at the URL above. And on developmental disabilities generally, you can see more here
https://www.cdc.gov/ncbddd/developmentaldisabilities/research.html

I didn't read it that carefully but it looked like these are targeted studies looking for specific data and outcomes and not inclusive of entire populations. It wasn't clear in less I missed it where they got the case files from.

I am not sure why targeted studies bother you, but here's autism data from a general parent survey. It gives a higher prevalence of 1 in 40, but I think that may not be so accurate, since it asks parents if any doctor or health professional ever said your kid has autism. There are cases where autism was suspected, but later ruled out, but parents still could say yes to the question.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833544/

The studies are fine but reality is most studies are looking to confirm their topic/hypothesis and usually do so. I'm on a new medication, as a good example and most of us were told its safe, few side effects and well studied and many of us (via online) are having serious side effects. Studies don't always tell the entire story as for these drugs they didn't check using them with other medical conditions and other things.

Given the ASD diagnosis has broadened and become more inclusive, we are going to have a higher percentage. Reality is kids who have severe issues, it doesn't really matter what you call it as they need services and their families need supports and if calling it ASD gets them the help they need, I fully support it. Where it gets hard is kids who are very minimally impacted or grow out of it, who are the kids most people see as they are not in the special education classes and can participate in regular activities, are also called ASD so its very deceiving to many and confusing to those not having a SN child as many don't understand the "spectrum" and the broad term really isn't useful to anyone. When doctors see an ASD label, which we cannot get removed, they walk in with automatic assumptions about my child then in front of my child have a discussion about getting it removed (which I've tried but only the original doctor can and they are no longer there) and it really freaks out my child (talk to me privately about it). There are a lot of unintended consequences for misdiagnosis and those are the ones most of us are talking about at both ends of the spectrum - the minimally impacted and the severely impacted. Most parents on here have kids in the middle where it is clear its ASD and its a non-issue and the question is how best can they help their child be the most successful person they can be.

How do other people know what your kid's diagnosis is unless you tell them?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:


I am saying they are calling everything ASD these days. You do know that many (most) ASD children have an intellectual disability, right. Not all ASD is high functioning.

Umm, no. One in 59 of kids are diagnosed with ASD, but 1 in 6 have some kind of developmental disability,
https://www.cdc.gov/ncbddd/autism/data.html

So 90% of kids diagnosed with a developmental disability don't have autism. How is that "everything."

1 in 6 kids total or 1 in 6 with ASD?

1 in 6 of all children have a developmental disability. 1 in 59 of all children have ASD.

Where are they getting these numbers from? Actual parents and doctors or the schools who very loosely use educational diagnosis?

The CDC has a complex methodology that reviews case files. It's explained at one the links at the URL above. And on developmental disabilities generally, you can see more here
https://www.cdc.gov/ncbddd/developmentaldisabilities/research.html

I didn't read it that carefully but it looked like these are targeted studies looking for specific data and outcomes and not inclusive of entire populations. It wasn't clear in less I missed it where they got the case files from.

I am not sure why targeted studies bother you, but here's autism data from a general parent survey. It gives a higher prevalence of 1 in 40, but I think that may not be so accurate, since it asks parents if any doctor or health professional ever said your kid has autism. There are cases where autism was suspected, but later ruled out, but parents still could say yes to the question.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833544/

The studies are fine but reality is most studies are looking to confirm their topic/hypothesis and usually do so. I'm on a new medication, as a good example and most of us were told its safe, few side effects and well studied and many of us (via online) are having serious side effects. Studies don't always tell the entire story as for these drugs they didn't check using them with other medical conditions and other things.

Given the ASD diagnosis has broadened and become more inclusive, we are going to have a higher percentage. Reality is kids who have severe issues, it doesn't really matter what you call it as they need services and their families need supports and if calling it ASD gets them the help they need, I fully support it. Where it gets hard is kids who are very minimally impacted or grow out of it, who are the kids most people see as they are not in the special education classes and can participate in regular activities, are also called ASD so its very deceiving to many and confusing to those not having a SN child as many don't understand the "spectrum" and the broad term really isn't useful to anyone. When doctors see an ASD label, which we cannot get removed, they walk in with automatic assumptions about my child then in front of my child have a discussion about getting it removed (which I've tried but only the original doctor can and they are no longer there) and it really freaks out my child (talk to me privately about it). There are a lot of unintended consequences for misdiagnosis and those are the ones most of us are talking about at both ends of the spectrum - the minimally impacted and the severely impacted. Most parents on here have kids in the middle where it is clear its ASD and its a non-issue and the question is how best can they help their child be the most successful person they can be.

What assumptions do the doctors’ have? The “only assumption” we’ve seen for DS with ASD/Asperger’s is that he has issues with social pragmatics which he has.

They read the label and assume something like moderate ASD and don't talk to my child and when he starts talking and staying what's going on they look at me funny and start questioning his file. Different insurances/doctors do things differently. Ours is clearly different from yours and all doctors have access to all records.

[Anonymous]

^So they assume he is more severe than he actually is. Yes, that would be irritating especially if he’s “lost” his diagnosis or was misdiagnosed in the first place.

My son’s chief complaint with his diagnosis is when he doesn’t want to do the work, “I’m not as smart as everyone thinks I am.” Ha. Tou’ve Been tested up the wazoo, you are more than capable. So get to it!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:


I am saying they are calling everything ASD these days. You do know that many (most) ASD children have an intellectual disability, right. Not all ASD is high functioning.

Umm, no. One in 59 of kids are diagnosed with ASD, but 1 in 6 have some kind of developmental disability,
https://www.cdc.gov/ncbddd/autism/data.html

So 90% of kids diagnosed with a developmental disability don't have autism. How is that "everything."

1 in 6 kids total or 1 in 6 with ASD?

1 in 6 of all children have a developmental disability. 1 in 59 of all children have ASD.

Where are they getting these numbers from? Actual parents and doctors or the schools who very loosely use educational diagnosis?

The CDC has a complex methodology that reviews case files. It's explained at one the links at the URL above. And on developmental disabilities generally, you can see more here
https://www.cdc.gov/ncbddd/developmentaldisabilities/research.html

I didn't read it that carefully but it looked like these are targeted studies looking for specific data and outcomes and not inclusive of entire populations. It wasn't clear in less I missed it where they got the case files from.

I am not sure why targeted studies bother you, but here's autism data from a general parent survey. It gives a higher prevalence of 1 in 40, but I think that may not be so accurate, since it asks parents if any doctor or health professional ever said your kid has autism. There are cases where autism was suspected, but later ruled out, but parents still could say yes to the question.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833544/

The studies are fine but reality is most studies are looking to confirm their topic/hypothesis and usually do so. I'm on a new medication, as a good example and most of us were told its safe, few side effects and well studied and many of us (via online) are having serious side effects. Studies don't always tell the entire story as for these drugs they didn't check using them with other medical conditions and other things.

Given the ASD diagnosis has broadened and become more inclusive, we are going to have a higher percentage. Reality is kids who have severe issues, it doesn't really matter what you call it as they need services and their families need supports and if calling it ASD gets them the help they need, I fully support it. Where it gets hard is kids who are very minimally impacted or grow out of it, who are the kids most people see as they are not in the special education classes and can participate in regular activities, are also called ASD so its very deceiving to many and confusing to those not having a SN child as many don't understand the "spectrum" and the broad term really isn't useful to anyone. When doctors see an ASD label, which we cannot get removed, they walk in with automatic assumptions about my child then in front of my child have a discussion about getting it removed (which I've tried but only the original doctor can and they are no longer there) and it really freaks out my child (talk to me privately about it). There are a lot of unintended consequences for misdiagnosis and those are the ones most of us are talking about at both ends of the spectrum - the minimally impacted and the severely impacted. Most parents on here have kids in the middle where it is clear its ASD and its a non-issue and the question is how best can they help their child be the most successful person they can be.

How do other people know what your kid's diagnosis is unless you tell them?

Agree. I have a kid who has ASD/ADHD-c, most people never think he has any diagnosis and are usually surprised when told. Never encountered any doctors who assume anything about DS.

[Anonymous]

Anonymous wrote:^So they assume he is more severe than he actually is. Yes, that would be irritating especially if he’s “lost” his diagnosis or was misdiagnosed in the first place.

My son’s chief complaint with his diagnosis is when he doesn’t want to do the work, “I’m not as smart as everyone thinks I am.” Ha. Tou’ve Been tested up the wazoo, you are more than capable. So get to it!

The problem is the diagnosis pops up automatically in the medical records so it is one of the first things along with medications a doctor sees so there are lots of assumptions till they talk to him.

Testing is great for that kind of stuff. For us, that kind of testing was helpful to argue with the school who put my kid in the mixed SN class and he didn't belong there. So, between private testing and their regular testing they couldn't argue to keep him there as he did extremely well (though I am not sure why he did standardized testing as the IEP they wrote, which we disagreed on, said no standardized tests but that's a different issue).

I wish insurances were mandated to provide services under developmental delays and not ASD until ages 6/7 for kids where it isn't very clear what is going on.