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:

In my experience, there are a lot of moving parts to this issue. The best thing you can do for your child is to treat whatever symptoms they have, and get a differential diagnosis. A differential diagnosis has every diagnosis on the table, instead of just running through the autism checklist.

Because the truth is, running through an autism checklist from the DSM 5 will get most children with special needs an ASD diagnosis. If they are high functioning, then their disability will cause social issues and their intelligence about their state will make them anxious, leaving them with repetitive behaviors. And if they are low functioning, then they won't be able to connect socially and will be anxious about their surroundings and as a way to cope with all repetitive behaviors. So the blind child now has ASD, the Down's child now has ASD, the CDLs child now has ASD. (There's a laziness about following the severity levels, too. Every person on the planet would be Level 1 according to how some doctors diagnose "repetitive behaviours." )

And with ASD comes insurance coverage, also contributing to the autism boom.

If your child is verbal, OP, the ADOS can help sort out issues. But if your child has a language disorder, the ADOS is not the best test.

In reality, a diagnosis should look at underlying causes.

This post is all over the place, mixing and matching unrelated issues, and full of exaggerations, half truths and meaningless statements.

No, its not. Kids who were previously diagnosed with cognitive issues are now ASD as are many others. Its very true even if you don't want to believe it.

Ok, but that's not what you said, you are just adding another issue to the mess.

I am the earlier poster and this is exactly what I said. The PP gets it.

I am 60. In my circle of friends 3 have children with ASD who are now in their late teens. When I was a kid, every one of those kids would have been labeled with the old term "mentally retarded."

That's because they were misdiagnosing kids with normal IQs and writing them off. Now we have better diagnosis and give them services.

No, we don't have better diagnosis. And, not all kids get services. Our public has routinely denied my child services. We had to do everything privately (and absolutely no reason not to qualify but a terrible principal and staff). Diagnosis have changed over the years to be more inclusive but there is still a lot of misdiagnosis and poor to no services for many kids.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
It's entirely possible that your kid's case was so mild that the work around were successful enough to allow your kid to "pass" for normal. This doesn't mean a "cure," he's just learned the workarounds successfully. This does happen sometimes.

My kid is normal and not passing for anything (but I think all kids are normal). We very clearly had a misdiagnosis but I think it was more for the services/money than anything. ASD is way to broad, as are other disorders, including language. (there are also huge issues with language disorder diagnosis, especially at the school levels).

I find this argument of "he's just learned the workarounds successfully" really strange. If he can adapt and all kids adapt in different ways how does he have a condition? What defines the condition then? There's no blood test or obvious brain difference. It's a set of symptoms and if he has no symptoms how is her child any different from the NT classmate who has no symptoms?

The idea of learning the workarounds is not generally accepted, it's just one explanation for why kids lose their diagnosis and if true probably not the most common reason. One of the key problems in ASD is the inability to pick up social cues. NT's learn how spontaneously, autistics have to be explicitly taught. If they learn it, they are doing it through mental scripts or problem solving rather than social instincts. Such people will always seem a bit "off" and it is hard work for them, but if they are very good at it, they can function effectively in social situations.

David Byrne of the Talking Heads says he is autistic. I don't think he was diagnosed as a child. He is successful and apparently has a social life, but his personality is definitely offbeat.

Some of our kids do naturally pick up things like social cues, especially if it was a language disorder where the receptive language was impacted. People underestimate how much receptive language impacts a child and when the receptive language finally comes in how different some of these kids are.

I was talking about ASD not a language disorder. They are not the same thing, and I am sure you know that.

Agree, except my child got an very early ASD diagnosis, so kids like mine are the ones where they get lumped under an umbrella term vs. kids who deserve the term and need all the supports and help that should (but doesn't always come with). That is the point of all this. When kids are little, receptive langue issues can look the same - lack of eye contact, not responding to questions/name, etc. They do look very similar which is why its very hard to distinguish at 1-2-3 between ASD and language disorders which is why some here were misdiagnosed language disorders (from previous posts) and some were misdiagnosed other things like ASD, ADHD, etc. Its very easy to make a mistake, especially when some of us get it in a 30 minute appointment (which clearly doesn't involve everything needed). Many kids do have ASD and are appropriately diagnosed and that is not the issue.. its all the other kids like PP have commented about.

Well, people are actually saying all kinds of different things that basically come down to, "I don't understand it or I had a bad experience, so ASD must be BS except when it isn't." It IS the issue because the misinformation that you are spreading causes the misunderstanding you are complaining about.

DP here. You are the one who is wrong. ASD is over diagnosed. Every thing that used to be something else is now called ASD.

Every statistic points to this diagnostic substitution.

Diagnostic substitution is not the same as misdiagnosis or overdiagnosis. That's just more misinformation about a complex subject.

Actually it can be. ASD is often used to get child and parent more services and help as ASD is the only diagnosis that mandates health insurances to pay in some states.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

In my experience, there are a lot of moving parts to this issue. The best thing you can do for your child is to treat whatever symptoms they have, and get a differential diagnosis. A differential diagnosis has every diagnosis on the table, instead of just running through the autism checklist.

Because the truth is, running through an autism checklist from the DSM 5 will get most children with special needs an ASD diagnosis. If they are high functioning, then their disability will cause social issues and their intelligence about their state will make them anxious, leaving them with repetitive behaviors. And if they are low functioning, then they won't be able to connect socially and will be anxious about their surroundings and as a way to cope with all repetitive behaviors. So the blind child now has ASD, the Down's child now has ASD, the CDLs child now has ASD. (There's a laziness about following the severity levels, too. Every person on the planet would be Level 1 according to how some doctors diagnose "repetitive behaviours." )

And with ASD comes insurance coverage, also contributing to the autism boom.

If your child is verbal, OP, the ADOS can help sort out issues. But if your child has a language disorder, the ADOS is not the best test.

In reality, a diagnosis should look at underlying causes.

This post is all over the place, mixing and matching unrelated issues, and full of exaggerations, half truths and meaningless statements.

No, its not. Kids who were previously diagnosed with cognitive issues are now ASD as are many others. Its very true even if you don't want to believe it.

Ok, but that's not what you said, you are just adding another issue to the mess.

I am the earlier poster and this is exactly what I said. The PP gets it.

I am 60. In my circle of friends 3 have children with ASD who are now in their late teens. When I was a kid, every one of those kids would have been labeled with the old term "mentally retarded."

That's because they were misdiagnosing kids with normal IQs and writing them off. Now we have better diagnosis and give them services.

This-my elderly dad had a cousin (now deceased) who was nonverbal. In those days, the school just told his parents-he doesn't talk, he is retarded (their word) so he can't go to school anymore. He taught himself to read and was brilliant with math, but no one understood what was going on and he never did have a paid job or move out.

This is why numbers are heavily skewed where people are saying the ASD and other SN populations have exploded when it really hasn't but kids like your cousin were just ignored and hidden at home. There was no health insurance or other ways to count these kids if they were not in school or getting any type of help.

[Anonymous]

Anonymous wrote:

Anonymous wrote:
Diagnostic substitution is not the same as misdiagnosis or overdiagnosis. That's just more misinformation about a complex subject.

Actually it can be. ASD is often used to get child and parent more services and help as ASD is the only diagnosis that mandates health insurances to pay in some states.

+1
Anyone that argues otherwise isn't looking at the facts. If you've ever talked to other parents in a waiting room for any type of therapy a large number will tell you their children do not have ASD but they have an ASD diagnosis.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

In my experience, there are a lot of moving parts to this issue. The best thing you can do for your child is to treat whatever symptoms they have, and get a differential diagnosis. A differential diagnosis has every diagnosis on the table, instead of just running through the autism checklist.

Because the truth is, running through an autism checklist from the DSM 5 will get most children with special needs an ASD diagnosis. If they are high functioning, then their disability will cause social issues and their intelligence about their state will make them anxious, leaving them with repetitive behaviors. And if they are low functioning, then they won't be able to connect socially and will be anxious about their surroundings and as a way to cope with all repetitive behaviors. So the blind child now has ASD, the Down's child now has ASD, the CDLs child now has ASD. (There's a laziness about following the severity levels, too. Every person on the planet would be Level 1 according to how some doctors diagnose "repetitive behaviours." )

And with ASD comes insurance coverage, also contributing to the autism boom.

If your child is verbal, OP, the ADOS can help sort out issues. But if your child has a language disorder, the ADOS is not the best test.

In reality, a diagnosis should look at underlying causes.

This post is all over the place, mixing and matching unrelated issues, and full of exaggerations, half truths and meaningless statements.

No, its not. Kids who were previously diagnosed with cognitive issues are now ASD as are many others. Its very true even if you don't want to believe it.

Ok, but that's not what you said, you are just adding another issue to the mess.

I am the earlier poster and this is exactly what I said. The PP gets it.

I am 60. In my circle of friends 3 have children with ASD who are now in their late teens. When I was a kid, every one of those kids would have been labeled with the old term "mentally retarded."

That's because they were misdiagnosing kids with normal IQs and writing them off. Now we have better diagnosis and give them services.

No, we don't have better diagnosis. And, not all kids get services. Our public has routinely denied my child services. We had to do everything privately (and absolutely no reason not to qualify but a terrible principal and staff). Diagnosis have changed over the years to be more inclusive but there is still a lot of misdiagnosis and poor to no services for many kids.

See 12:54's story about how bad it was. Are you seriously saying a kid like that now wouldn't get some help, even if it's private pay? It's far from perfect now, but it's 1000X better than the 1960s.

We get very little from the public school ourselves. But back then we would have been blamed for raising a "bad kid" and he probably would have been expelled.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
Diagnostic substitution is not the same as misdiagnosis or overdiagnosis. That's just more misinformation about a complex subject.

Actually it can be. ASD is often used to get child and parent more services and help as ASD is the only diagnosis that mandates health insurances to pay in some states.

+1
Anyone that argues otherwise isn't looking at the facts. If you've ever talked to other parents in a waiting room for any type of therapy a large number will tell you their children do not have ASD but they have an ASD diagnosis.

My dd has therapy 3 times a week and I've never had a conversation like this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
It's entirely possible that your kid's case was so mild that the work around were successful enough to allow your kid to "pass" for normal. This doesn't mean a "cure," he's just learned the workarounds successfully. This does happen sometimes.

My kid is normal and not passing for anything (but I think all kids are normal). We very clearly had a misdiagnosis but I think it was more for the services/money than anything. ASD is way to broad, as are other disorders, including language. (there are also huge issues with language disorder diagnosis, especially at the school levels).

I find this argument of "he's just learned the workarounds successfully" really strange. If he can adapt and all kids adapt in different ways how does he have a condition? What defines the condition then? There's no blood test or obvious brain difference. It's a set of symptoms and if he has no symptoms how is her child any different from the NT classmate who has no symptoms?

The idea of learning the workarounds is not generally accepted, it's just one explanation for why kids lose their diagnosis and if true probably not the most common reason. One of the key problems in ASD is the inability to pick up social cues. NT's learn how spontaneously, autistics have to be explicitly taught. If they learn it, they are doing it through mental scripts or problem solving rather than social instincts. Such people will always seem a bit "off" and it is hard work for them, but if they are very good at it, they can function effectively in social situations.

David Byrne of the Talking Heads says he is autistic. I don't think he was diagnosed as a child. He is successful and apparently has a social life, but his personality is definitely offbeat.

Some of our kids do naturally pick up things like social cues, especially if it was a language disorder where the receptive language was impacted. People underestimate how much receptive language impacts a child and when the receptive language finally comes in how different some of these kids are.

I was talking about ASD not a language disorder. They are not the same thing, and I am sure you know that.

Agree, except my child got an very early ASD diagnosis, so kids like mine are the ones where they get lumped under an umbrella term vs. kids who deserve the term and need all the supports and help that should (but doesn't always come with). That is the point of all this. When kids are little, receptive langue issues can look the same - lack of eye contact, not responding to questions/name, etc. They do look very similar which is why its very hard to distinguish at 1-2-3 between ASD and language disorders which is why some here were misdiagnosed language disorders (from previous posts) and some were misdiagnosed other things like ASD, ADHD, etc. Its very easy to make a mistake, especially when some of us get it in a 30 minute appointment (which clearly doesn't involve everything needed). Many kids do have ASD and are appropriately diagnosed and that is not the issue.. its all the other kids like PP have commented about.

Well, people are actually saying all kinds of different things that basically come down to, "I don't understand it or I had a bad experience, so ASD must be BS except when it isn't." It IS the issue because the misinformation that you are spreading causes the misunderstanding you are complaining about.

DP here. You are the one who is wrong. ASD is over diagnosed. Every thing that used to be something else is now called ASD.

Every statistic points to this diagnostic substitution.

Diagnostic substitution is not the same as misdiagnosis or overdiagnosis. That's just more misinformation about a complex subject.

Actually it can be. ASD is often used to get child and parent more services and help as ASD is the only diagnosis that mandates health insurances to pay in some states.

"Can be" is not the same as "is." It's hard to say how often this happens, but my point and what people are not getting is that a PROPER diagnosis using best practices is usually correct and is for a real condition even for those called "high functioning." Best practices means a neuropsych exam by a qualified expert, parent interview, medical history, ADOS, differential diagnosis for confounding factors and comorbidities, a detailed report explaining child's particular pattern of strengths.and weaknesses, and multidisciplinary team review.

People are confusing what a doctor checks on an insurance form and form vs. real diagnosis. My psychiatrist only checks the ADHD box for my kid, does that mean he doesn't really have ASD too?

And if the states are only mandating coverage for ASD, maybe the law is the problem, not the diagnosis.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
Diagnostic substitution is not the same as misdiagnosis or overdiagnosis. That's just more misinformation about a complex subject.

Actually it can be. ASD is often used to get child and parent more services and help as ASD is the only diagnosis that mandates health insurances to pay in some states.

+1
Anyone that argues otherwise isn't looking at the facts. If you've ever talked to other parents in a waiting room for any type of therapy a large number will tell you their children do not have ASD but they have an ASD diagnosis.

My dd has therapy 3 times a week and I've never had a conversation like this.

+1 I've never had a conversation like that either.

[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:
It's entirely possible that your kid's case was so mild that the work around were successful enough to allow your kid to "pass" for normal. This doesn't mean a "cure," he's just learned the workarounds successfully. This does happen sometimes.

My kid is normal and not passing for anything (but I think all kids are normal). We very clearly had a misdiagnosis but I think it was more for the services/money than anything. ASD is way to broad, as are other disorders, including language. (there are also huge issues with language disorder diagnosis, especially at the school levels).

I find this argument of "he's just learned the workarounds successfully" really strange. If he can adapt and all kids adapt in different ways how does he have a condition? What defines the condition then? There's no blood test or obvious brain difference. It's a set of symptoms and if he has no symptoms how is her child any different from the NT classmate who has no symptoms?

The idea of learning the workarounds is not generally accepted, it's just one explanation for why kids lose their diagnosis and if true probably not the most common reason. One of the key problems in ASD is the inability to pick up social cues. NT's learn how spontaneously, autistics have to be explicitly taught. If they learn it, they are doing it through mental scripts or problem solving rather than social instincts. Such people will always seem a bit "off" and it is hard work for them, but if they are very good at it, they can function effectively in social situations.

David Byrne of the Talking Heads says he is autistic. I don't think he was diagnosed as a child. He is successful and apparently has a social life, but his personality is definitely offbeat.

Some of our kids do naturally pick up things like social cues, especially if it was a language disorder where the receptive language was impacted. People underestimate how much receptive language impacts a child and when the receptive language finally comes in how different some of these kids are.

I was talking about ASD not a language disorder. They are not the same thing, and I am sure you know that.

Agree, except my child got an very early ASD diagnosis, so kids like mine are the ones where they get lumped under an umbrella term vs. kids who deserve the term and need all the supports and help that should (but doesn't always come with). That is the point of all this. When kids are little, receptive langue issues can look the same - lack of eye contact, not responding to questions/name, etc. They do look very similar which is why its very hard to distinguish at 1-2-3 between ASD and language disorders which is why some here were misdiagnosed language disorders (from previous posts) and some were misdiagnosed other things like ASD, ADHD, etc. Its very easy to make a mistake, especially when some of us get it in a 30 minute appointment (which clearly doesn't involve everything needed). Many kids do have ASD and are appropriately diagnosed and that is not the issue.. its all the other kids like PP have commented about.

Well, people are actually saying all kinds of different things that basically come down to, "I don't understand it or I had a bad experience, so ASD must be BS except when it isn't." It IS the issue because the misinformation that you are spreading causes the misunderstanding you are complaining about.

DP here. You are the one who is wrong. ASD is over diagnosed. Every thing that used to be something else is now called ASD.

Every statistic points to this diagnostic substitution.

Diagnostic substitution is not the same as misdiagnosis or overdiagnosis. That's just more misinformation about a complex subject.

Actually it can be. ASD is often used to get child and parent more services and help as ASD is the only diagnosis that mandates health insurances to pay in some states.

"Can be" is not the same as "is." It's hard to say how often this happens, but my point and what people are not getting is that a PROPER diagnosis using best practices is usually correct and is for a real condition even for those called "high functioning." Best practices means a neuropsych exam by a qualified expert, parent interview, medical history, ADOS, differential diagnosis for confounding factors and comorbidities, a detailed report explaining child's particular pattern of strengths.and weaknesses, and multidisciplinary team review.

People are confusing what a doctor checks on an insurance form and form vs. real diagnosis. My psychiatrist only checks the ADHD box for my kid, does that mean he doesn't really have ASD too?

And if the states are only mandating coverage for ASD, maybe the law is the problem, not the diagnosis.[/quote


I think this is the point that many PP's are missing, many evaluations which result in an ASD diagnosis are far from this description. I had an hour evaluation with a developmental pediatrician for my 2 year old son and walked out with a diagnosis of ASD.

[Anonymous]

Anonymous wrote:

I am 60. In my circle of friends 3 have children with ASD who are now in their late teens. When I was a kid, every one of those kids would have been labeled with the old term "mentally retarded."

That's because they were misdiagnosing kids with normal IQs and writing them off. Now we have better diagnosis and give them services.

+ 1 and thank goodness they are not doing that any more!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
Diagnostic substitution is not the same as misdiagnosis or overdiagnosis. That's just more misinformation about a complex subject.

Actually it can be. ASD is often used to get child and parent more services and help as ASD is the only diagnosis that mandates health insurances to pay in some states.

+1
Anyone that argues otherwise isn't looking at the facts. If you've ever talked to other parents in a waiting room for any type of therapy a large number will tell you their children do not have ASD but they have an ASD diagnosis.

My dd has therapy 3 times a week and I've never had a conversation like this.

I've heard this a few times. The conversation usually begins by talking about the high cost of therapy and how insurance pays very little but then the parent says thank goodness for the ASD diagnosis which helps us that get little amount. Otherwise we'd get nothing. These aren't parents in denial but just being practical. I believe them from what I see.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
Diagnostic substitution is not the same as misdiagnosis or overdiagnosis. That's just more misinformation about a complex subject.

Actually it can be. ASD is often used to get child and parent more services and help as ASD is the only diagnosis that mandates health insurances to pay in some states.

+1
Anyone that argues otherwise isn't looking at the facts. If you've ever talked to other parents in a waiting room for any type of therapy a large number will tell you their children do not have ASD but they have an ASD diagnosis.

My dd has therapy 3 times a week and I've never had a conversation like this.

+1 I've never had a conversation like that either.

Do your children have ASD? I can't believe anyone would have this conversation if they suspected your child is on the spectrum because it would seem insensitive.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
Diagnostic substitution is not the same as misdiagnosis or overdiagnosis. That's just more misinformation about a complex subject.

Actually it can be. ASD is often used to get child and parent more services and help as ASD is the only diagnosis that mandates health insurances to pay in some states.

+1
Anyone that argues otherwise isn't looking at the facts. If you've ever talked to other parents in a waiting room for any type of therapy a large number will tell you their children do not have ASD but they have an ASD diagnosis.

My dd has therapy 3 times a week and I've never had a conversation like this.

+1 I've never had a conversation like that either.

Do your children have ASD? I can't believe anyone would have this conversation if they suspected your child is on the spectrum because it would seem insensitive.

My kid does has ASD and ADHD and all the kids had ASD, ADHD or some sort of anxiety. Previously we had the ADHD diagnosis, but not ASD yet. We had some conversations the possibility of ASD even though our testing said no at that point. I never had a conversation about having a diagnosis but not actually having the condition.

[Anonymous]

Here's research on kids who lose their ASD diagnosis later in life.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4838550/

Important points to get:
- 87% of diagnosed kids keep their diagnoses.
- of the 13 per cent who lost the diagnosis, only 24% had it to get services (that is, about 3% of the original sample).
-of the ones who lost their diagnosis, most were said to have ADHD, which can look a lot like ASD, and other than medication, is often treated the same way.
-of the ones who lost their diagnosis, only 4% were NT(that is, about 0.5% of the original sample).

It should also be noted that some diagnoses may be preliminary, but early intervention leads to the best outcomes regardless of diagnosis, so that "the American Academy of Pediatrics (AAP) recommends that pediatric primary care physicians refer children with positive screening tests to receive intervention services for children with ASD before the results of a comprehensive ASD evaluation are known."

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
Diagnostic substitution is not the same as misdiagnosis or overdiagnosis. That's just more misinformation about a complex subject.

Actually it can be. ASD is often used to get child and parent more services and help as ASD is the only diagnosis that mandates health insurances to pay in some states.

+1
Anyone that argues otherwise isn't looking at the facts. If you've ever talked to other parents in a waiting room for any type of therapy a large number will tell you their children do not have ASD but they have an ASD diagnosis.

My dd has therapy 3 times a week and I've never had a conversation like this.

+1 I've never had a conversation like that either.

Do your children have ASD? I can't believe anyone would have this conversation if they suspected your child is on the spectrum because it would seem insensitive.

My kid does has ASD and ADHD and all the kids had ASD, ADHD or some sort of anxiety. Previously we had the ADHD diagnosis, but not ASD yet. We had some conversations the possibility of ASD even though our testing said no at that point. I never had a conversation about having a diagnosis but not actually having the condition.

Our doctor never had the conversation. He insisted it was ASD and insisted on all kinds of services (which we tried an only speech was useful. If your child is clearly ASD, of course you aren't going to have conversations like that as its a non-issue. Its the kids who are borderline or its something else, which most here commenting don't have experience with.