CNN report -- Autism: Could high U.S. rate be due to over-diagnosis?

[Anonymous]

Anonymous wrote:Also, OP/PP,

Please get out of your head, "false diagnosis." It's not black and white. The kids using services after age 8, may have gotten services under a different educational designation. Also, diagnoses can change after a child gets older and the situation becomes more clear.

Have you ever met a young child with selective mutism or genetic disorder who are non-verbal or barely verbal? I have. When they were young, they were given services coded as autism. When kids are two or three, an autism diagnosis may make the most sense of the behaviors they present with. Through intervention or subsequent evaluations, it can become clearer as to what is going on.

As a parent, you need to start somewhere. Better a child gets services (however they're labeled) early than none at all.

This is a good example of misdiagnosis and why our "professionals" need to do a better job at differential diagnosis. Yes, these kids need services but the services are very different. Our developmental ped was very negative toward me when I dropped ABA for more speech therapy as ABA was basically doing far more simplistic speech than my child needed and did not get my child (liked the therapist personally).

[Anonymous]

Anonymous wrote:
Again, OP, so what? Your proving my point that early intervention works and what may look like autism when children are young is made clearer through time and intervention.

The 1 in 68 "estimate" from the CDC is based on a surveillance survey, "Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed..."

These were NOT medical diagnoses. The number is based on children receiving services and under what category.

I pity your SN child b/c your obsession is getting you no where. You obviously don't understand the initial CDC study on how they came up with the estimate. Please ask your pediatrician, ST or other health professional that your child sees to explain it to you.

So what? I think this is pretty important for numerous reasons:

1. it shows that perhaps the autism rate is over blown. There are so many people that are convinced that autism rates have sky rocketed in the past 20 yrs due to things like vaccines. If it can be proven that the autism rate is not as high as people have thought, then perhaps there wouldn't be such a hysteria over vaccines causing autism, and more parents would vaccinate their kids

2. it shows that the medical and insurance industry and schools needs to do a better job at understanding and addressing varying SN

3. it shows that, in some small cases, kids are slower to mature and develop, and they don't really have any SN other than being a late bloomer. I think years ago, more people were accepting of this fact than they are today.

[Anonymous]

Anonymous wrote:

Anonymous wrote:
Again, OP, so what? Your proving my point that early intervention works and what may look like autism when children are young is made clearer through time and intervention.

The 1 in 68 "estimate" from the CDC is based on a surveillance survey, "Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed..."

These were NOT medical diagnoses. The number is based on children receiving services and under what category.

I pity your SN child b/c your obsession is getting you no where. You obviously don't understand the initial CDC study on how they came up with the estimate. Please ask your pediatrician, ST or other health professional that your child sees to explain it to you.

So what? I think this is pretty important for numerous reasons:

1. it shows that perhaps the autism rate is over blown. There are so many people that are convinced that autism rates have sky rocketed in the past 20 yrs due to things like vaccines. If it can be proven that the autism rate is not as high as people have thought, then perhaps there wouldn't be such a hysteria over vaccines causing autism, and more parents would vaccinate their kids

2. it shows that the medical and insurance industry and schools needs to do a better job at understanding and addressing varying SN

3. it shows that, in some small cases, kids are slower to mature and develop, and they don't really have any SN other than being a late bloomer. I think years ago, more people were accepting of this fact than they are today.

Wow, you really are dense and even stupider than I realized. You are wrapped up in assumptions that don't make any sense. Can you even comprehend the next few sentences?

The CDC "estimate" is based on a surveillance survey, "Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed..."

1. It's not hysteria, it's more kids getting services. Why do you not get that? (It has absolutely nothing to do with vaccination. The lack of connection with vaccines has long been disproven over many, many clinical trials: http://www.vaccinateyourbaby.org/safe/research.cfm)

2. It shows more kids are getting the help they need early on, so that after age 8 they may no longer need the autism criteria. Why do you think the CDC did the follow up surveys--to help better understand the estimate number given how many people were using services. (It has little to do with health care or schools definitions of what is autism. Many kids whether they are on the spectrum or not will need early intervention.)

3. "Late bloomer" kids generally don't need this intensity of services.

Autism isn't a dirty word. If your child received this diagnosis and received services as a result, feel lucky and blessed. There are many autistic people living productive lives and do not feel hampered by their diagnosis. It is part of how they're wired; it doesn't define who they are. So you need to work on your grudge about a supposed misdiagnosis of your kid. You're the one caught in some sort of shame spiral. Do what's best for your kid--get over it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
Again, OP, so what? Your proving my point that early intervention works and what may look like autism when children are young is made clearer through time and intervention.

The 1 in 68 "estimate" from the CDC is based on a surveillance survey, "Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed..."

These were NOT medical diagnoses. The number is based on children receiving services and under what category.

I pity your SN child b/c your obsession is getting you no where. You obviously don't understand the initial CDC study on how they came up with the estimate. Please ask your pediatrician, ST or other health professional that your child sees to explain it to you.

So what? I think this is pretty important for numerous reasons:

1. it shows that perhaps the autism rate is over blown. There are so many people that are convinced that autism rates have sky rocketed in the past 20 yrs due to things like vaccines. If it can be proven that the autism rate is not as high as people have thought, then perhaps there wouldn't be such a hysteria over vaccines causing autism, and more parents would vaccinate their kids

2. it shows that the medical and insurance industry and schools needs to do a better job at understanding and addressing varying SN

3. it shows that, in some small cases, kids are slower to mature and develop, and they don't really have any SN other than being a late bloomer. I think years ago, more people were accepting of this fact than they are today.

Wow, you really are dense and even stupider than I realized. You are wrapped up in assumptions that don't make any sense. Can you even comprehend the next few sentences?

The CDC "estimate" is based on a surveillance survey, "Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed..."

1. It's not hysteria, it's more kids getting services. Why do you not get that? (It has absolutely nothing to do with vaccination. The lack of connection with vaccines has long been disproven over many, many clinical trials: http://www.vaccinateyourbaby.org/safe/research.cfm)

2. It shows more kids are getting the help they need early on, so that after age 8 they may no longer need the autism criteria. Why do you think the CDC did the follow up surveys--to help better understand the estimate number given how many people were using services. (It has little to do with health care or schools definitions of what is autism. Many kids whether they are on the spectrum or not will need early intervention.)

3. "Late bloomer" kids generally don't need this intensity of services.

Autism isn't a dirty word. If your child received this diagnosis and received services as a result, feel lucky and blessed. There are many autistic people living productive lives and do not feel hampered by their diagnosis. It is part of how they're wired; it doesn't define who they are. So you need to work on your grudge about a supposed misdiagnosis of your kid. You're the one caught in some sort of shame spiral. Do what's best for your kid--get over it.

Reading comprehension fail. I think you're confused. I'm the PP, but not a PP you had responded to, nor the OP. .

to quote the HuffPo article:

"Rather, as some previous researchers theorized, most of them were simply misdiagnosed or intentionally diagnosed with ASD for other reasons.

Among parents whose child lost an ASD diagnosis, 73.5 percent said it was because they were given a new one, such as attention deficit hyperactivity disorder (46 percent), anxiety problems (17 percent), depression (12 percent) learning disabilities (seven percent), behavioral problems (nine percent) or sensory, auditory, or processing disorders (23 percent).

Another 24 percent said they used the ASD diagnosis to access benefits and services. Meanwhile, 21 percent of parents believe their kids matured out of the disorder or received effective treatment. "

1. I stated that it's important to understand that the rate of autism is probably not as high as people think, as the articles have stated, and that this is important because some people have concluded that the rise in autism is caused by vaccines. The hysteria is over vaccines causing autism, not about kids getting more services.

2. Kids might be getting help, but they may not be getting the right help they need because of the incorrect diagnosis. Isn't that what some people have stated... that they were misdiagnosed and got services they didn't even need? Isn't it better to get the proper diagnosis instead of being lumped into the autism category? Like the behavioral problem diagnosis. What autism services would you need for that?

3. There are incidences of kids being diagnosed and getting services, but then "outgrowing" the diagnosis or some kind of perceived SN simply because they were late bloomers. Does a late bloomer need early intervention? Maybe in this competitive environment, but years ago, they just learned to deal with it. Is that harsh? IDK. I think in some ways we do a service by pushing these late bloomers early by forcing them to receive services. Like I said, years ago, our society was more accepting that a child is a late bloomer than we are today. Today, we need a diagnosis for everything that doesn't seem "normal".

So, yes, it is a big deal that this kind of misdiagnosis is happening.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
Again, OP, so what? Your proving my point that early intervention works and what may look like autism when children are young is made clearer through time and intervention.

The 1 in 68 "estimate" from the CDC is based on a surveillance survey, "Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed..."

These were NOT medical diagnoses. The number is based on children receiving services and under what category.

I pity your SN child b/c your obsession is getting you no where. You obviously don't understand the initial CDC study on how they came up with the estimate. Please ask your pediatrician, ST or other health professional that your child sees to explain it to you.

So what? I think this is pretty important for numerous reasons:

1. it shows that perhaps the autism rate is over blown. There are so many people that are convinced that autism rates have sky rocketed in the past 20 yrs due to things like vaccines. If it can be proven that the autism rate is not as high as people have thought, then perhaps there wouldn't be such a hysteria over vaccines causing autism, and more parents would vaccinate their kids

2. it shows that the medical and insurance industry and schools needs to do a better job at understanding and addressing varying SN

3. it shows that, in some small cases, kids are slower to mature and develop, and they don't really have any SN other than being a late bloomer. I think years ago, more people were accepting of this fact than they are today.

Wow, you really are dense and even stupider than I realized. You are wrapped up in assumptions that don't make any sense. Can you even comprehend the next few sentences?

The CDC "estimate" is based on a surveillance survey, "Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed..."

1. It's not hysteria, it's more kids getting services. Why do you not get that? (It has absolutely nothing to do with vaccination. The lack of connection with vaccines has long been disproven over many, many clinical trials: http://www.vaccinateyourbaby.org/safe/research.cfm)

2. It shows more kids are getting the help they need early on, so that after age 8 they may no longer need the autism criteria. Why do you think the CDC did the follow up surveys--to help better understand the estimate number given how many people were using services. (It has little to do with health care or schools definitions of what is autism. Many kids whether they are on the spectrum or not will need early intervention.)

3. "Late bloomer" kids generally don't need this intensity of services.

Autism isn't a dirty word. If your child received this diagnosis and received services as a result, feel lucky and blessed. There are many autistic people living productive lives and do not feel hampered by their diagnosis. It is part of how they're wired; it doesn't define who they are. So you need to work on your grudge about a supposed misdiagnosis of your kid. You're the one caught in some sort of shame spiral. Do what's best for your kid--get over it.

Reading comprehension fail. I think you're confused. I'm the PP, but not a PP you had responded to, nor the OP. .

to quote the HuffPo article:

"Rather, as some previous researchers theorized, most of them were simply misdiagnosed or intentionally diagnosed with ASD for other reasons.

Among parents whose child lost an ASD diagnosis, 73.5 percent said it was because they were given a new one, such as attention deficit hyperactivity disorder (46 percent), anxiety problems (17 percent), depression (12 percent) learning disabilities (seven percent), behavioral problems (nine percent) or sensory, auditory, or processing disorders (23 percent).

Another 24 percent said they used the ASD diagnosis to access benefits and services. Meanwhile, 21 percent of parents believe their kids matured out of the disorder or received effective treatment. "

1. I stated that it's important to understand that the rate of autism is probably not as high as people think, as the articles have stated, and that this is important because some people have concluded that the rise in autism is caused by vaccines. The hysteria is over vaccines causing autism, not about kids getting more services.

2. Kids might be getting help, but they may not be getting the right help they need because of the incorrect diagnosis. Isn't that what some people have stated... that they were misdiagnosed and got services they didn't even need? Isn't it better to get the proper diagnosis instead of being lumped into the autism category? Like the behavioral problem diagnosis. What autism services would you need for that?

3. There are incidences of kids being diagnosed and getting services, but then "outgrowing" the diagnosis or some kind of perceived SN simply because they were late bloomers. Does a late bloomer need early intervention? Maybe in this competitive environment, but years ago, they just learned to deal with it. Is that harsh? IDK. I think in some ways we do a service by pushing these late bloomers early by forcing them to receive services. Like I said, years ago, our society was more accepting that a child is a late bloomer than we are today. Today, we need a diagnosis for everything that doesn't seem "normal".

So, yes, it is a big deal that this kind of misdiagnosis is happening.

Functional behavioral assessment and a behavioral plan. This is used for all behavior issues not just for kids with an ASD dx. If a FBA/BP does not work then other options are explored but schools do a FBA first for all problem behaviors.

[Anonymous]

As I've said b/f, I agree, the "estimated" number is probably higher than what the number actually is.

However, getting speech, OT, or behavioral therapy under an ASD diagnosis or something else will look the same regardless of what diagnosis it falls under.

And DUH, when kids get older it's easier to tease out an issue at age 6, 7, 8, or older than when a kid is a toddler or preschooler.

So if you don't want to add to the inflated estimate, refuse services under the ASD label and you'll be golden.

[Anonymous]

Anonymous wrote:As I've said b/f, I agree, the "estimated" number is probably higher than what the number actually is.

However, getting speech, OT, or behavioral therapy under an ASD diagnosis or something else will look the same regardless of what diagnosis it falls under.

And DUH, when kids get older it's easier to tease out an issue at age 6, 7, 8, or older than when a kid is a toddler or preschooler.

So if you don't want to add to the inflated estimate, refuse services under the ASD label and you'll be golden.

Completely and totally untrue. Been there, done that. Autism assumptions drive the type of therapies a child gets. 100 percent.

[Anonymous]

Anonymous wrote:As I've said b/f, I agree, the "estimated" number is probably higher than what the number actually is.

However, getting speech, OT, or behavioral therapy under an ASD diagnosis or something else will look the same regardless of what diagnosis it falls under.

And DUH, when kids get older it's easier to tease out an issue at age 6, 7, 8, or older than when a kid is a toddler or preschooler.

So if you don't want to add to the inflated estimate, refuse services under the ASD label and you'll be golden.

You cannot just refuse the label and its not as simple as just refusing services. We have an it made things very uncomfortable with the prescribing doc and still does several years later. A child who does not need behavioral therapy/ABA should not be forced to receive it because of a doc who spent one hour with the child and declared autism.

[Anonymous]

Anonymous wrote:As I've said b/f, I agree, the "estimated" number is probably higher than what the number actually is.

However, getting speech, OT, or behavioral therapy under an ASD diagnosis or something else will look the same regardless of what diagnosis it falls under.

And DUH, when kids get older it's easier to tease out an issue at age 6, 7, 8, or older than when a kid is a toddler or preschooler.

So if you don't want to add to the inflated estimate, refuse services under the ASD label and you'll be golden.

Or you can be informed, and have your child labeled with what is true -- in many cases, just a developmental delay. You get all the school-based services with that label as you do with the autism label. The rush to label every kid who is different autistic is terrible for all children, those with autism and those without.

[Anonymous]

Anonymous wrote:

Anonymous wrote:As I've said b/f, I agree, the "estimated" number is probably higher than what the number actually is.

However, getting speech, OT, or behavioral therapy under an ASD diagnosis or something else will look the same regardless of what diagnosis it falls under.

And DUH, when kids get older it's easier to tease out an issue at age 6, 7, 8, or older than when a kid is a toddler or preschooler.

So if you don't want to add to the inflated estimate, refuse services under the ASD label and you'll be golden.

Or you can be informed, and have your child labeled with what is true -- in many cases, just a developmental delay. You get all the school-based services with that label as you do with the autism label. The rush to label every kid who is different autistic is terrible for all children, those with autism and those without.

You can keep the "developmental delay" label until age 8. Hardly rushing. But to all the parents with "misdiagnosed," no one ever forces you to accept services under an autism designation. That is completely your choice.

[Anonymous]

Anonymous wrote:

Anonymous wrote:As I've said b/f, I agree, the "estimated" number is probably higher than what the number actually is.

However, getting speech, OT, or behavioral therapy under an ASD diagnosis or something else will look the same regardless of what diagnosis it falls under.

And DUH, when kids get older it's easier to tease out an issue at age 6, 7, 8, or older than when a kid is a toddler or preschooler.

So if you don't want to add to the inflated estimate, refuse services under the ASD label and you'll be golden.

Or you can be informed, and have your child labeled with what is true -- in many cases, just a developmental delay. You get all the school-based services with that label as you do with the autism label. The rush to label every kid who is different autistic is terrible for all children, those with autism and those without.

I am very informed and no, we cannot get the label removed from our health insurance. I cannot say about the school system as we do everything privately. We are avoiding the school system till our child progresses more.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:As I've said b/f, I agree, the "estimated" number is probably higher than what the number actually is.

However, getting speech, OT, or behavioral therapy under an ASD diagnosis or something else will look the same regardless of what diagnosis it falls under.

And DUH, when kids get older it's easier to tease out an issue at age 6, 7, 8, or older than when a kid is a toddler or preschooler.

So if you don't want to add to the inflated estimate, refuse services under the ASD label and you'll be golden.

Or you can be informed, and have your child labeled with what is true -- in many cases, just a developmental delay. You get all the school-based services with that label as you do with the autism label. The rush to label every kid who is different autistic is terrible for all children, those with autism and those without.

You can keep the "developmental delay" label until age 8. Hardly rushing. But to all the parents with "misdiagnosed," no one ever forces you to accept services under an autism designation. That is completely your choice.

8 would be reasonable for us. You are solely thinking of school system. Not everyone gets school based services. Health insurance works differently. We can only see one doctor who made up his mind and thats it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:As I've said b/f, I agree, the "estimated" number is probably higher than what the number actually is.

However, getting speech, OT, or behavioral therapy under an ASD diagnosis or something else will look the same regardless of what diagnosis it falls under.

And DUH, when kids get older it's easier to tease out an issue at age 6, 7, 8, or older than when a kid is a toddler or preschooler.

So if you don't want to add to the inflated estimate, refuse services under the ASD label and you'll be golden.

Or you can be informed, and have your child labeled with what is true -- in many cases, just a developmental delay. You get all the school-based services with that label as you do with the autism label. The rush to label every kid who is different autistic is terrible for all children, those with autism and those without.

You can keep the "developmental delay" label until age 8. Hardly rushing. But to all the parents with "misdiagnosed," no one ever forces you to accept services under an autism designation. That is completely your choice.

8 would be reasonable for us. You are solely thinking of school system. Not everyone gets school based services. Health insurance works differently. We can only see one doctor who made up his mind and thats it.

No, you don't have to accept services through your insurance either if you disagree with diagnosis. Just pay out of pocket for everything and never put in for reimbursement. Your choice.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:As I've said b/f, I agree, the "estimated" number is probably higher than what the number actually is.

However, getting speech, OT, or behavioral therapy under an ASD diagnosis or something else will look the same regardless of what diagnosis it falls under.

And DUH, when kids get older it's easier to tease out an issue at age 6, 7, 8, or older than when a kid is a toddler or preschooler.

So if you don't want to add to the inflated estimate, refuse services under the ASD label and you'll be golden.

Or you can be informed, and have your child labeled with what is true -- in many cases, just a developmental delay. You get all the school-based services with that label as you do with the autism label. The rush to label every kid who is different autistic is terrible for all children, those with autism and those without.

You can keep the "developmental delay" label until age 8. Hardly rushing. But to all the parents with "misdiagnosed," no one ever forces you to accept services under an autism designation. That is completely your choice.

8 would be reasonable for us. You are solely thinking of school system. Not everyone gets school based services. Health insurance works differently. We can only see one doctor who made up his mind and thats it.

No, you don't have to accept services through your insurance either if you disagree with diagnosis. Just pay out of pocket for everything and never put in for reimbursement. Your choice.

We have paid out of pocket but between that and private school, it was unaffordable. Insurance help was the only way to make it work. And, if we didn't accept the therapy, our child would still have the diagnosis. Just because your refuse services does not remove a diagnosis. Our dev. ped does not talk to our providers or school so that is part of the issue.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:As I've said b/f, I agree, the "estimated" number is probably higher than what the number actually is.

However, getting speech, OT, or behavioral therapy under an ASD diagnosis or something else will look the same regardless of what diagnosis it falls under.

And DUH, when kids get older it's easier to tease out an issue at age 6, 7, 8, or older than when a kid is a toddler or preschooler.

So if you don't want to add to the inflated estimate, refuse services under the ASD label and you'll be golden.

Or you can be informed, and have your child labeled with what is true -- in many cases, just a developmental delay. You get all the school-based services with that label as you do with the autism label. The rush to label every kid who is different autistic is terrible for all children, those with autism and those without.

You can keep the "developmental delay" label until age 8. Hardly rushing. But to all the parents with "misdiagnosed," no one ever forces you to accept services under an autism designation. That is completely your choice.

8 would be reasonable for us. You are solely thinking of school system. Not everyone gets school based services. Health insurance works differently. We can only see one doctor who made up his mind and thats it.

No, you don't have to accept services through your insurance either if you disagree with diagnosis. Just pay out of pocket for everything and never put in for reimbursement. Your choice.

We have paid out of pocket but between that and private school, it was unaffordable. Insurance help was the only way to make it work. And, if we didn't accept the therapy, our child would still have the diagnosis. Just because your refuse services does not remove a diagnosis. Our dev. ped does not talk to our providers or school so that is part of the issue.

Again, your choice. Stop blaming a "misdiagnosis" that allows you to use insurance to pay for services. There are those of us who don't have these things covered by insurance, so you must realize how petty it is.

Secondly, if you're avoiding public schools until after age 8 that's pretty ridiculous. You don't have to submit outside documentation to get an IEP and IME, schools don't actually read private reports. They'll do their own testing, so if your kid is truly not autistic then you should have nothing to worry about.