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

[Anonymous]

Anonymous wrote:

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.

The difference is we have electronic records and only the original doctor can do a rule out and the original doctor initially refused to continue to get services paid for and then retired so there is no way to change it. With the electronic records, diagnosis and medications pop up at each appointment. So, they see when they open the record to make a new record. That is the impact of one 30 minute appointment/diagnosis when a child is a toddler. All of us have very different insurances and each work differently so you may never have experienced it but we do every time we go to the doctor and that is what some of us are trying to sometimes explain. Our insurance is very ASD friendly so the doctor was trying to help in his own way.

[Anonymous]

Pretty much everyone has electronic records these days.

None of my kid's doctors treat him differently because he has ASD.

perhaps you should switch doctors.

[Anonymous]

Anonymous wrote:Pretty much everyone has electronic records these days.

None of my kid's doctors treat him differently because he has ASD.

perhaps you should switch doctors.

She has brought this issue up before and the story doesn't add up.
There's a lot of things she could do about it, but she refuses to do any of them.

In my case, I write ASD on the intake form, so every doctor knows, electronic record or not. They never say anything about it or treat my kid any differently.

[Anonymous]

Anonymous wrote:Pretty much everyone has electronic records these days.

None of my kid's doctors treat him differently because he has ASD.

perhaps you should switch doctors.

We have an HMO style insurance so its not as simple as switching doctors. We no longer need any of the SN services so its a non-issue but the point is the diagnosis is in the electronic medical system and cannot be easily removed. We'd have to change insurances, which we cannot do without a huge financial impact. They do a superficial look at the medical records before our appointments (including ER visits) and see it.

Your electronic records are probably by each doctor, not an entire system, where every doctor, every specialist and even the ER can see everything (which is great in many ways and a problem in other ways).

[Anonymous]

Anonymous wrote:

Anonymous wrote:Pretty much everyone has electronic records these days.

None of my kid's doctors treat him differently because he has ASD.

perhaps you should switch doctors.

We have an HMO style insurance so its not as simple as switching doctors. We no longer need any of the SN services so its a non-issue but the point is the diagnosis is in the electronic medical system and cannot be easily removed. We'd have to change insurances, which we cannot do without a huge financial impact. They do a superficial look at the medical records before our appointments (including ER visits) and see it.

Your electronic records are probably by each doctor, not an entire system, where every doctor, every specialist and even the ER can see everything (which is great in many ways and a problem in other ways).

Lot's of people have HMOs, and now states have databases that let
every doctor in the state see your medical records, so your situation is not unique. But if you talk to doctors the way you sound here, it's no wonder both they and you are confused.

[Anonymous]

Re: Diagnostic substitution. It's real and accounts for a lot of what is going on with the autism label. It's driven, as so many things are, by money in large part. Many states mandate services if you get an autism diagnosis, to there's a whole industry now tailored to get that diagnosis and providing the services the state will pay for. Have many friends doing this now.


And here's an article detailing how intellectually disability has dropped in almost an exact inverse relationship to how ASD has climbed:


https://www.wsj.com/articles/diagnostic-substitution-drives-autism-spike-1442425517




Here's info from about 12 years ago, marking the same trend in schools, the other labels dwindle while the ASD label climbs:

RESULTS. The average administrative prevalence of autism among children increased from 0.6 to 3.1 per 1000 from 1994 to 2003. By 2003, only 17 states had a special education prevalence of autism that was within the range of recent epidemiological estimates. During the same period, the prevalence of mental retardation and learning disabilities declined by 2.8 and 8.3 per 1000, respectively. Higher autism prevalence was significantly associated with corresponding declines in the prevalence of mental retardation and learning disabilities. The declining prevalence of mental retardation and learning disabilities from 1994 to 2003 represented a significant downward deflection in their preexisting trajectories of prevalence from 1984 to 1993. California was one of a handful of states that did not clearly follow this pattern.



And fyi: It was later found California wasn't including their language kids, which is why their numbers weren't the same as other states.

[Anonymous]

Anonymous wrote:

Re: Diagnostic substitution. It's real and accounts for a lot of what is going on with the autism label. It's driven, as so many things are, by money in large part. Many states mandate services if you get an autism diagnosis, to there's a whole industry now tailored to get that diagnosis and providing the services the state will pay for. Have many friends doing this now.


And here's an article detailing how intellectually disability has dropped in almost an exact inverse relationship to how ASD has climbed:


https://www.wsj.com/articles/diagnostic-substitution-drives-autism-spike-1442425517


Here's info from about 12 years ago, marking the same trend in schools, the other labels dwindle while the ASD label climbs:

RESULTS. The average administrative prevalence of autism among children increased from 0.6 to 3.1 per 1000 from 1994 to 2003. By 2003, only 17 states had a special education prevalence of autism that was within the range of recent epidemiological estimates. During the same period, the prevalence of mental retardation and learning disabilities declined by 2.8 and 8.3 per 1000, respectively. Higher autism prevalence was significantly associated with corresponding declines in the prevalence of mental retardation and learning disabilities. The declining prevalence of mental retardation and learning disabilities from 1994 to 2003 represented a significant downward deflection in their preexisting trajectories of prevalence from 1984 to 1993. California was one of a handful of states that did not clearly follow this pattern.


And fyi: It was later found California wasn't including their language kids, which is why their numbers weren't the same as other states.

The data is absolutely correct, but there are a few problems with that. First of all, Asperger's syndrome (now ASD, level 1) was not recognized at all until the early 80s, and did not make into the DSM until 1994. Many of these kids were mislabeled as mentally retarded or childhood schizhoprenia even when they had normal IQs. So of course there was big jump in ASD after 1994 and a decline in intellectual disability. Second, autism was not added as a category in IDEA until 1990, so pre-1990 school data is useless and we see a gradual rise in school autism after 1990, and decline in other diagnoses. Third, there are in fact many children who have both intellectual disabilities and autism, but IDEA forces schools to pick a primary category, so after 1990, children with both could go either way, but the school had to pick. Fourth, many states started requiring autism coverage in the late 2000's, early 2010's but we see rising autism rates going back to the 1990/1994 changes in definitions. Because the trend line goes so far back, it's more likely the states were responding to rising autism rates than causing it.

So even if there are few cases where borderline kids are called ASD to get services, the vast majority of the diagnostic substitution we are seeing are real cases that simply went unrecognized or were misdiagnosed prior the early 90s.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Re: Diagnostic substitution. It's real and accounts for a lot of what is going on with the autism label. It's driven, as so many things are, by money in large part. Many states mandate services if you get an autism diagnosis, to there's a whole industry now tailored to get that diagnosis and providing the services the state will pay for. Have many friends doing this now.


And here's an article detailing how intellectually disability has dropped in almost an exact inverse relationship to how ASD has climbed:


https://www.wsj.com/articles/diagnostic-substitution-drives-autism-spike-1442425517


Here's info from about 12 years ago, marking the same trend in schools, the other labels dwindle while the ASD label climbs:

RESULTS. The average administrative prevalence of autism among children increased from 0.6 to 3.1 per 1000 from 1994 to 2003. By 2003, only 17 states had a special education prevalence of autism that was within the range of recent epidemiological estimates. During the same period, the prevalence of mental retardation and learning disabilities declined by 2.8 and 8.3 per 1000, respectively. Higher autism prevalence was significantly associated with corresponding declines in the prevalence of mental retardation and learning disabilities. The declining prevalence of mental retardation and learning disabilities from 1994 to 2003 represented a significant downward deflection in their preexisting trajectories of prevalence from 1984 to 1993. California was one of a handful of states that did not clearly follow this pattern.


And fyi: It was later found California wasn't including their language kids, which is why their numbers weren't the same as other states.

The data is absolutely correct, but there are a few problems with that. First of all, Asperger's syndrome (now ASD, level 1) was not recognized at all until the early 80s, and did not make into the DSM until 1994. Many of these kids were mislabeled as mentally retarded or childhood schizhoprenia even when they had normal IQs. So of course there was big jump in ASD after 1994 and a decline in intellectual disability. Second, autism was not added as a category in IDEA until 1990, so pre-1990 school data is useless and we see a gradual rise in school autism after 1990, and decline in other diagnoses. Third, there are in fact many children who have both intellectual disabilities and autism, but IDEA forces schools to pick a primary category, so after 1990, children with both could go either way, but the school had to pick. Fourth, many states started requiring autism coverage in the late 2000's, early 2010's but we see rising autism rates going back to the 1990/1994 changes in definitions. Because the trend line goes so far back, it's more likely the states were responding to rising autism rates than causing it.

So even if there are few cases where borderline kids are called ASD to get services, the vast majority of the diagnostic substitution we are seeing are real cases that simply went unrecognized or were misdiagnosed prior the early 90s.

Uh, no.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Pretty much everyone has electronic records these days.

None of my kid's doctors treat him differently because he has ASD.

perhaps you should switch doctors.

We have an HMO style insurance so its not as simple as switching doctors. We no longer need any of the SN services so its a non-issue but the point is the diagnosis is in the electronic medical system and cannot be easily removed. We'd have to change insurances, which we cannot do without a huge financial impact. They do a superficial look at the medical records before our appointments (including ER visits) and see it.

Your electronic records are probably by each doctor, not an entire system, where every doctor, every specialist and even the ER can see everything (which is great in many ways and a problem in other ways).

Lot's of people have HMOs, and now states have databases that let
every doctor in the state see your medical records, so your situation is not unique. But if you talk to doctors the way you sound here, it's no wonder both they and you are confused.

What's confusing? We got a ASD diagnosis with a quick appointment when child was a toddler. Now it cannot be removed. So, yes, its confusing and causes issues. I think its interesting how ASD parents want to dismiss what others are going through but then get upset if they are dismissed. That's like me saying, per my DCUM ASD diagnosis, given how my child is doing, your child should be doing the same, so why are you arguing with schools about IEP/504's as your child's diagnosis is exactly the same as my child's so there is absolutely no reason why you need accommodations (when reality is your child very much needs them). ASD is a very broad term, which is what people are having an issue with as it doesn't do any of our kids much justice. If someone sees my kid who is doing great in all aspects, then should someone hear high functioning and assume my HF kid is the same as yours when they are very different kids and have very different needs. Just like getting rid of Aspergers was a poor choice as it had a specific set of criteria that explained those children well. Same as getting rid of MERLD, which explains kids with receptive and expressive concerns well as its very hard to explain to someone about receptive langue as must don't get it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Re: Diagnostic substitution. It's real and accounts for a lot of what is going on with the autism label. It's driven, as so many things are, by money in large part. Many states mandate services if you get an autism diagnosis, to there's a whole industry now tailored to get that diagnosis and providing the services the state will pay for. Have many friends doing this now.


And here's an article detailing how intellectually disability has dropped in almost an exact inverse relationship to how ASD has climbed:


https://www.wsj.com/articles/diagnostic-substitution-drives-autism-spike-1442425517


Here's info from about 12 years ago, marking the same trend in schools, the other labels dwindle while the ASD label climbs:

RESULTS. The average administrative prevalence of autism among children increased from 0.6 to 3.1 per 1000 from 1994 to 2003. By 2003, only 17 states had a special education prevalence of autism that was within the range of recent epidemiological estimates. During the same period, the prevalence of mental retardation and learning disabilities declined by 2.8 and 8.3 per 1000, respectively. Higher autism prevalence was significantly associated with corresponding declines in the prevalence of mental retardation and learning disabilities. The declining prevalence of mental retardation and learning disabilities from 1994 to 2003 represented a significant downward deflection in their preexisting trajectories of prevalence from 1984 to 1993. California was one of a handful of states that did not clearly follow this pattern.


And fyi: It was later found California wasn't including their language kids, which is why their numbers weren't the same as other states.

The data is absolutely correct, but there are a few problems with that. First of all, Asperger's syndrome (now ASD, level 1) was not recognized at all until the early 80s, and did not make into the DSM until 1994. Many of these kids were mislabeled as mentally retarded or childhood schizhoprenia even when they had normal IQs. So of course there was big jump in ASD after 1994 and a decline in intellectual disability. Second, autism was not added as a category in IDEA until 1990, so pre-1990 school data is useless and we see a gradual rise in school autism after 1990, and decline in other diagnoses. Third, there are in fact many children who have both intellectual disabilities and autism, but IDEA forces schools to pick a primary category, so after 1990, children with both could go either way, but the school had to pick. Fourth, many states started requiring autism coverage in the late 2000's, early 2010's but we see rising autism rates going back to the 1990/1994 changes in definitions. Because the trend line goes so far back, it's more likely the states were responding to rising autism rates than causing it.

So even if there are few cases where borderline kids are called ASD to get services, the vast majority of the diagnostic substitution we are seeing are real cases that simply went unrecognized or were misdiagnosed prior the early 90s.

Uh, no.

The diagnostic criteria has greatly changed over the years and people have more access to specialists and services. In the 90's there were not nearly the supports and services available and most kids were called nerdy, geeky, weird, etc. vs. ASD. I know lots of kids who are borderline who get the diagnosis for the service as most insurances will not pay speech, OT and PT without an ASD diagnosis or proof of a injury and even with proof of injury its still very hard.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Pretty much everyone has electronic records these days.

None of my kid's doctors treat him differently because he has ASD.

perhaps you should switch doctors.

We have an HMO style insurance so its not as simple as switching doctors. We no longer need any of the SN services so its a non-issue but the point is the diagnosis is in the electronic medical system and cannot be easily removed. We'd have to change insurances, which we cannot do without a huge financial impact. They do a superficial look at the medical records before our appointments (including ER visits) and see it.

Your electronic records are probably by each doctor, not an entire system, where every doctor, every specialist and even the ER can see everything (which is great in many ways and a problem in other ways).

Lot's of people have HMOs, and now states have databases that let
every doctor in the state see your medical records, so your situation is not unique. But if you talk to doctors the way you sound here, it's no wonder both they and you are confused.

What's confusing? We got a ASD diagnosis with a quick appointment when child was a toddler. Now it cannot be removed. So, yes, its confusing and causes issues. I think its interesting how ASD parents want to dismiss what others are going through but then get upset if they are dismissed. That's like me saying, per my DCUM ASD diagnosis, given how my child is doing, your child should be doing the same, so why are you arguing with schools about IEP/504's as your child's diagnosis is exactly the same as my child's so there is absolutely no reason why you need accommodations (when reality is your child very much needs them). ASD is a very broad term, which is what people are having an issue with as it doesn't do any of our kids much justice. If someone sees my kid who is doing great in all aspects, then should someone hear high functioning and assume my HF kid is the same as yours when they are very different kids and have very different needs. Just like getting rid of Aspergers was a poor choice as it had a specific set of criteria that explained those children well. Same as getting rid of MERLD, which explains kids with receptive and expressive concerns well as its very hard to explain to someone about receptive langue as must don't get it.

I totally get what you are saying. And you are right.

The DCUM mindset is that ASD is this small difference -- most people don't even know their kids have a Dx! Which is highly suspect.

In the trenches, ASD looks a lot difference when the police are being called because of your teen's behavior. THAT is the reality of ASD for many (most) people. So no wonder that doctors approach your child differently. To them, ASD means severely impacted.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Re: Diagnostic substitution. It's real and accounts for a lot of what is going on with the autism label. It's driven, as so many things are, by money in large part. Many states mandate services if you get an autism diagnosis, to there's a whole industry now tailored to get that diagnosis and providing the services the state will pay for. Have many friends doing this now.


And here's an article detailing how intellectually disability has dropped in almost an exact inverse relationship to how ASD has climbed:


https://www.wsj.com/articles/diagnostic-substitution-drives-autism-spike-1442425517


Here's info from about 12 years ago, marking the same trend in schools, the other labels dwindle while the ASD label climbs:

RESULTS. The average administrative prevalence of autism among children increased from 0.6 to 3.1 per 1000 from 1994 to 2003. By 2003, only 17 states had a special education prevalence of autism that was within the range of recent epidemiological estimates. During the same period, the prevalence of mental retardation and learning disabilities declined by 2.8 and 8.3 per 1000, respectively. Higher autism prevalence was significantly associated with corresponding declines in the prevalence of mental retardation and learning disabilities. The declining prevalence of mental retardation and learning disabilities from 1994 to 2003 represented a significant downward deflection in their preexisting trajectories of prevalence from 1984 to 1993. California was one of a handful of states that did not clearly follow this pattern.


And fyi: It was later found California wasn't including their language kids, which is why their numbers weren't the same as other states.

The data is absolutely correct, but there are a few problems with that. First of all, Asperger's syndrome (now ASD, level 1) was not recognized at all until the early 80s, and did not make into the DSM until 1994. Many of these kids were mislabeled as mentally retarded or childhood schizhoprenia even when they had normal IQs. So of course there was big jump in ASD after 1994 and a decline in intellectual disability. Second, autism was not added as a category in IDEA until 1990, so pre-1990 school data is useless and we see a gradual rise in school autism after 1990, and decline in other diagnoses. Third, there are in fact many children who have both intellectual disabilities and autism, but IDEA forces schools to pick a primary category, so after 1990, children with both could go either way, but the school had to pick. Fourth, many states started requiring autism coverage in the late 2000's, early 2010's but we see rising autism rates going back to the 1990/1994 changes in definitions. Because the trend line goes so far back, it's more likely the states were responding to rising autism rates than causing it.

So even if there are few cases where borderline kids are called ASD to get services, the vast majority of the diagnostic substitution we are seeing are real cases that simply went unrecognized or were misdiagnosed prior the early 90s.

Uh, no.

Every single word I wrote is true and you can look it up yourself.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Pretty much everyone has electronic records these days.

None of my kid's doctors treat him differently because he has ASD.

perhaps you should switch doctors.

We have an HMO style insurance so its not as simple as switching doctors. We no longer need any of the SN services so its a non-issue but the point is the diagnosis is in the electronic medical system and cannot be easily removed. We'd have to change insurances, which we cannot do without a huge financial impact. They do a superficial look at the medical records before our appointments (including ER visits) and see it.

Your electronic records are probably by each doctor, not an entire system, where every doctor, every specialist and even the ER can see everything (which is great in many ways and a problem in other ways).

Lot's of people have HMOs, and now states have databases that let
every doctor in the state see your medical records, so your situation is not unique. But if you talk to doctors the way you sound here, it's no wonder both they and you are confused.

What's confusing? We got a ASD diagnosis with a quick appointment when child was a toddler. Now it cannot be removed. So, yes, its confusing and causes issues. I think its interesting how ASD parents want to dismiss what others are going through but then get upset if they are dismissed. That's like me saying, per my DCUM ASD diagnosis, given how my child is doing, your child should be doing the same, so why are you arguing with schools about IEP/504's as your child's diagnosis is exactly the same as my child's so there is absolutely no reason why you need accommodations (when reality is your child very much needs them). ASD is a very broad term, which is what people are having an issue with as it doesn't do any of our kids much justice. If someone sees my kid who is doing great in all aspects, then should someone hear high functioning and assume my HF kid is the same as yours when they are very different kids and have very different needs. Just like getting rid of Aspergers was a poor choice as it had a specific set of criteria that explained those children well. Same as getting rid of MERLD, which explains kids with receptive and expressive concerns well as its very hard to explain to someone about receptive langue as must don't get it.

It's confusing because I didn't say anything like that, you keep bringing in side issues and you keep contradicting yourself. Just one example: you say ASD is a very broad term and people have a problem with that. But you also say doctors think your kid is moderately impacted just by seeing "ASD" on the chart, which means they don't realize it's a broad term. That story doesn't make any sense and I don't think you understand what the doctors are actually telling you. Just like you think I said things I didn't say and also bring in a bunch of other issues every time you post.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Pretty much everyone has electronic records these days.

None of my kid's doctors treat him differently because he has ASD.

perhaps you should switch doctors.

We have an HMO style insurance so its not as simple as switching doctors. We no longer need any of the SN services so its a non-issue but the point is the diagnosis is in the electronic medical system and cannot be easily removed. We'd have to change insurances, which we cannot do without a huge financial impact. They do a superficial look at the medical records before our appointments (including ER visits) and see it.

Your electronic records are probably by each doctor, not an entire system, where every doctor, every specialist and even the ER can see everything (which is great in many ways and a problem in other ways).

Lot's of people have HMOs, and now states have databases that let
every doctor in the state see your medical records, so your situation is not unique. But if you talk to doctors the way you sound here, it's no wonder both they and you are confused.

What's confusing? We got a ASD diagnosis with a quick appointment when child was a toddler. Now it cannot be removed. So, yes, its confusing and causes issues. I think its interesting how ASD parents want to dismiss what others are going through but then get upset if they are dismissed. That's like me saying, per my DCUM ASD diagnosis, given how my child is doing, your child should be doing the same, so why are you arguing with schools about IEP/504's as your child's diagnosis is exactly the same as my child's so there is absolutely no reason why you need accommodations (when reality is your child very much needs them). ASD is a very broad term, which is what people are having an issue with as it doesn't do any of our kids much justice. If someone sees my kid who is doing great in all aspects, then should someone hear high functioning and assume my HF kid is the same as yours when they are very different kids and have very different needs. Just like getting rid of Aspergers was a poor choice as it had a specific set of criteria that explained those children well. Same as getting rid of MERLD, which explains kids with receptive and expressive concerns well as its very hard to explain to someone about receptive langue as must don't get it.

I totally get what you are saying. And you are right.

The DCUM mindset is that ASD is this small difference -- most people don't even know their kids have a Dx! Which is highly suspect.

In the trenches, ASD looks a lot difference when the police are being called because of your teen's behavior. THAT is the reality of ASD for many (most) people. So no wonder that doctors approach your child differently. To them, ASD means severely impacted.

Not at all. The problem is that PP is saying her kid had a misdiagnosis at age 2 and currently doesn't act like ASD at all, but doctors all act like he's severely impacted and get him upset. But my kid does have HFA and I've never seen a doctor treat her like she is severely impacted or even talk about the ASD diagnosis at all unless it was somehow relevant to the problem we're there for.

And it isn't like my kid never had a meltdown at a doctor or I haven't been called to school for bizarre or violent behavior, so your "in the trenches" comment is really out of place. I am in the trenches now. No the difference is not "small." But I've also seen more severe cases than mine, and it definitely isn't what you and PP think it is. You both make a lot of assumptions about ASD, and that's really the one thing you can't do.

So I don't understand why she can't find a doctor to just, you know, examine the patient without making unwarranted assumptions while every doctor I go to just acts like a normal doctor treating a child. Whatever the reason, it surely isn't because these ALL these doctors, hers and mine, don't know what real, fake, mild, severe, misdiagnosed, or undiagnosed ASD looks like. Because I am sure they've seen all of that if they've been around long enough.

The only thing I can think of is that they are telling her something she doesn't want to hear.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

The difference is we have electronic records and only the original doctor can do a rule out and the original doctor initially refused to continue to get services paid for and then retired so there is no way to change it. With the electronic records, diagnosis and medications pop up at each appointment. So, they see when they open the record to make a new record. That is the impact of one 30 minute appointment/diagnosis when a child is a toddler. All of us have very different insurances and each work differently so you may never have experienced it but we do every time we go to the doctor and that is what some of us are trying to sometimes explain. Our insurance is very ASD friendly so the doctor was trying to help in his own way.

You can have the record corrected even if the original doctor is not available. If the HMO refuses to correct the record, they have to inform you in writing of the reason for your refusal and let you provide a rebuttal that goes in your record. Why don't you try to do this?


45 § 164.526 Amendment of protected health information.
(a)Standard: Right to amend.

(1)Right to amend. An individual has the right to have a covered entity amend protected health information or a record about the individual in a designated record set for as long as the protected health information is maintained in the designated record set.

(2)Denial of amendment. A covered entity may deny an individual's request for amendment, if it determines that the protected health information or record that is the subject of the request:

(i) Was not created by the covered entity, unless the individual provides a reasonable basis to believe that the originator of protected health information is no longer available to act on the requested amendment;

(ii) Is not part of the designated record set;

(iii) Would not be available for inspection under § 164.524; or

(iv) Is accurate and complete.

(b)Implementation specifications: Requests for amendment and timely action -

(1)Individual's request for amendment. The covered entity must permit an individual to request that the covered entity amend the protected health information maintained in the designated record set. The covered entity may require individuals to make requests for amendment in writing and to provide a reason to support a requested amendment, provided that it informs individuals in advance of such requirements.

(2)Timely action by the covered entity.

(i) The covered entity must act on the individual's request for an amendment no later than 60 days after receipt of such a request, as follows.

(A) If the covered entity grants the requested amendment, in whole or in part, it must take the actions required by paragraphs (c)(1) and (2) of this section.

(B) If the covered entity denies the requested amendment, in whole or in part, it must provide the individual with a written denial, in accordance with paragraph (d)(1) of this section.

(ii) If the covered entity is unable to act on the amendment within the time required by paragraph (b)(2)(i) of this section, the covered entity may extend the time for such action by no more than 30 days, provided that:

(A) The covered entity, within the time limit set by paragraph (b)(2)(i) of this section, provides the individual with a written statement of the reasons for the delay and the date by which the covered entity will complete its action on the request; and

(B) The covered entity may have only one such extension of time for action on a request for an amendment.

(c)Implementation specifications: Accepting the amendment. If the covered entity accepts the requested amendment, in whole or in part, the covered entity must comply with the following requirements.

(1)Making the amendment. The covered entity must make the appropriate amendment to the protected health information or record that is the subject of the request for amendment by, at a minimum, identifying the records in the designated record set that are affected by the amendment and appending or otherwise providing a link to the location of the amendment.

(2)Informing the individual. In accordance with paragraph (b) of this section, the covered entity must timely inform the individual that the amendment is accepted and obtain the individual's identification of and agreement to have the covered entity notify the relevant persons with which the amendment needs to be shared in accordance with paragraph (c)(3) of this section.

(3)Informing others. The covered entity must make reasonable efforts to inform and provide the amendment within a reasonable time to:

(i)Persons identified by the individual as having received protected health information about the individual and needing the amendment; and

(ii) Persons, including business associates, that the covered entity knows have the protected health information that is the subject of the amendment and that may have relied, or could foreseeably rely, on such information to the detriment of the individual.

(d)Implementation specifications: Denying the amendment. If the covered entity denies the requested amendment, in whole or in part, the covered entity must comply with the following requirements.

(1)Denial. The covered entity must provide the individual with a timely, written denial, in accordance with paragraph (b)(2) of this section. The denial must use plain language and contain:

(i) The basis for the denial, in accordance with paragraph (a)(2) of this section;

(ii) The individual's right to submit a written statement disagreeing with the denial and how the individual may file such a statement;

(iii) A statement that, if the individual does not submit a statement of disagreement, the individual may request that the covered entity provide the individual's request for amendment and the denial with any future disclosures of the protected health information that is the subject of the amendment; and

(iv) A description of how the individual may complain to the covered entity pursuant to the complaint procedures established in § 164.530(d) or to the Secretary pursuant to the procedures established in § 160.306. The description must include the name, or title, and telephone number of the contact person or office designated in § 164.530(a)(1)(ii).

(2)Statement of disagreement. The covered entity must permit the individual to submit to the covered entity a written statement disagreeing with the denial of all or part of a requested amendment and the basis of such disagreement. The covered entity may reasonably limit the length of a statement of disagreement.

(3)Rebuttal statement. The covered entity may prepare a written rebuttal to the individual's statement of disagreement. Whenever such a rebuttal is prepared, the covered entity must provide a copy to the individual who submitted the statement of disagreement.

(4)Recordkeeping. The covered entity must, as appropriate, identify the record or protected health information in the designated record set that is the subject of the disputed amendment and append or otherwise link the individual's request for an amendment, the covered entity's denial of the request, the individual's statement of disagreement, if any, and the covered entity's rebuttal, if any, to the designated record set.

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