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

[Anonymous]

Anonymous wrote: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."

That is targeted research. Kids like mine aren't participating in those studies.

[Anonymous]

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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.

We also got no services until my child was older and they were bad so we terminated them (thanks to someone telling me here we could even though school tried to refuse). Back then, no kids didn't get much in terms of therapies. The heavy therapies are only the last 15+ years. They had basic speech and other things but few probably could afford private as incomes were very different and those of us who do pay either have very high incomes or live very modestly to make it all work (or go broke). Of course, now you can easily get anything private pay, but there were not the resources we have now. (and now we have resources but most providers are pretty bad)

[Anonymous]

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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.

The conversations we are talking about here are waiting room conversations, not with doctors. Please try to focus.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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."

That is targeted research. Kids like mine aren't participating in those studies.

If your kid ever had an autism diagnosis at any point in his life, he is in the population studied. If your kid never had an autism diagnosis, why does that matter in this thread?

[Anonymous]

Anonymous wrote:

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!

In this case, no. These children are intellectually disabled. They have had years of therapy and
verbal and non verbal IQ tests. The point is the same. Today they are labeled ASD. 50 years ago, they were labeled MR.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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!

In this case, no. These children are intellectually disabled. They have had years of therapy and
verbal and non verbal IQ tests. The point is the same. Today they are labeled ASD. 50 years ago, they were labeled MR.
Huh? Are you saying ASD is the same as intellectual disability?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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!

In this case, no. These children are intellectually disabled. They have had years of therapy and
verbal and non verbal IQ tests. The point is the same. Today they are labeled ASD. 50 years ago, they were labeled MR.

Huh? Are you saying ASD is the same as intellectual disability?


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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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!

In this case, no. These children are intellectually disabled. They have had years of therapy and
verbal and non verbal IQ tests. The point is the same. Today they are labeled ASD. 50 years ago, they were labeled MR.

Huh? Are you saying ASD is the same as intellectual disability?

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."

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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!

In this case, no. These children are intellectually disabled. They have had years of therapy and
verbal and non verbal IQ tests. The point is the same. Today they are labeled ASD. 50 years ago, they were labeled MR.

Huh? Are you saying ASD is the same as intellectual disability?

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?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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!

In this case, no. These children are intellectually disabled. They have had years of therapy and
verbal and non verbal IQ tests. The point is the same. Today they are labeled ASD. 50 years ago, they were labeled MR.

Huh? Are you saying ASD is the same as intellectual disability?

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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!

In this case, no. These children are intellectually disabled. They have had years of therapy and
verbal and non verbal IQ tests. The point is the same. Today they are labeled ASD. 50 years ago, they were labeled MR.

Huh? Are you saying ASD is the same as intellectual disability?

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?

[Anonymous]

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

[Anonymous]

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.

[Anonymous]

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/

[Anonymous]

So 1 in 6 that’s basically everybody