The Kids Who Beat Autism: New York Times

[Anonymous]

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Anonymous wrote:

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Anonymous wrote:Kids can't "lose" an autism diagnosis. That's sort of like saying in the middle of a gestational period, that a woman is no longer pregnant. If they no longer had a diagnosis of autism, it's likely they were misdiagnosed to begin with.

Children can show very autistic like behavior but not have full blown autism.

Stupid, stupid researchers out there and doctors diagnosing our children.

And WHO are you PP? People figure out medical things all the time. Jeez, there is no reason to believe there will be no progress in autism. I'm glad there are people out there with open, inquisitive minds willing to work on things like this.

Who am I? I'm a parent of an autistic child who has probably ever therapy known from the age of two on. I left my legal career to do nothing but help my child and I left no stone unturned. My child was very high functioning to begin with and, despite all efforts, we see very little difference. My husband is a doctor who sees children with ASD all the time also. I never stated there would no progress in autism, simply that progress will not be enough to take you out of the diagnosis. It will not. So fuck you for your attitude and ignorance. When you have tried every known therapy or treatment, then write on this thread.

Just because you have an autistic child does not mean you have a crystal ball. Thank goodness your negative attitude will not stop others from searching for answers.

There are no answers. Just interventions, wild educated guesses and pure luck. She is sad, exhausted and really struggling. Till you have been there, do not judge.

There are no answers NOW. We hope -- I see you are without hope but others still have hope -- that there will be answers, cures and ways to prevent it in the future. That's what the article was about -- that there may be cures.

My child happens to be one of the ones breaking through and I posted that so I do not understand your comment. I am very hopeful my child will be ok but as we go to services daily, I can see the wide variety of kids and how they and their families struggle. There is no cure - these kids can function better but they will still have their struggles. Until they find out the individual causes for why, then can never truly cure it. I believe in misdiagnosis as the reason not cure. You cure cancer or another medical issue. Autism is not something your cure.

How can you say a thing like that? If they don't even know what causes it -- and something obviously causes it -- then how can you be so determined that there is no cure? There is a cure. We need to find it. (they didn't used to cure cancer or other medical issues either -- but thanks to research, now we can cure some cancers and lots of other medical conditions.)

This is not cancer or some illness. This probably has multiple origins depending on the person. We do not have the technology to identify it and while we can improve the quality of some lives, we can never cure it. If it is "cured," then that person had something else entirely and never had autism. Autism can never be cured... just the quality of life improved with early and continuing intervention (which our society often does not even want to pay for). One day there may be a "cure" but as of today, we have a bunch of studies with educated guesses and wishful thinking and a group of us parents struggling to do the very best for our kids and hoping for the best possible outcome within this unknown. This is NOT cancer. This is not an allergy. We don't know what it is and my guess is for many, it is something different. It could be a birth defect, it could be a nutritional issue, it could be a birth injury, it could be a genetic issue or it could be none of the above. We just do not know! With some cancer's, they can pinpoint it and fix it. Do not compare the two. That is insulting.

In your view there is no cure for autism. In my view, there is and we haven't found it yet. I have no doubt we will figure this out and stop it.

I compared it to cancer because that is what it was compared to in the post I was responding to.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Kids can't "lose" an autism diagnosis. That's sort of like saying in the middle of a gestational period, that a woman is no longer pregnant. If they no longer had a diagnosis of autism, it's likely they were misdiagnosed to begin with.

Children can show very autistic like behavior but not have full blown autism.

Stupid, stupid researchers out there and doctors diagnosing our children.

And WHO are you PP? People figure out medical things all the time. Jeez, there is no reason to believe there will be no progress in autism. I'm glad there are people out there with open, inquisitive minds willing to work on things like this.

Who am I? I'm a parent of an autistic child who has probably ever therapy known from the age of two on. I left my legal career to do nothing but help my child and I left no stone unturned. My child was very high functioning to begin with and, despite all efforts, we see very little difference. My husband is a doctor who sees children with ASD all the time also. I never stated there would no progress in autism, simply that progress will not be enough to take you out of the diagnosis. It will not. So fuck you for your attitude and ignorance. When you have tried every known therapy or treatment, then write on this thread.

Just because you have an autistic child does not mean you have a crystal ball. Thank goodness your negative attitude will not stop others from searching for answers.

There are no answers. Just interventions, wild educated guesses and pure luck. She is sad, exhausted and really struggling. Till you have been there, do not judge.

There are no answers NOW. We hope -- I see you are without hope but others still have hope -- that there will be answers, cures and ways to prevent it in the future. That's what the article was about -- that there may be cures.

My child happens to be one of the ones breaking through and I posted that so I do not understand your comment. I am very hopeful my child will be ok but as we go to services daily, I can see the wide variety of kids and how they and their families struggle. There is no cure - these kids can function better but they will still have their struggles. Until they find out the individual causes for why, then can never truly cure it. I believe in misdiagnosis as the reason not cure. You cure cancer or another medical issue. Autism is not something your cure.

How can you say a thing like that? If they don't even know what causes it -- and something obviously causes it -- then how can you be so determined that there is no cure? There is a cure. We need to find it. (they didn't used to cure cancer or other medical issues either -- but thanks to research, now we can cure some cancers and lots of other medical conditions.)

This is not cancer or some illness. This probably has multiple origins depending on the person. We do not have the technology to identify it and while we can improve the quality of some lives, we can never cure it. If it is "cured," then that person had something else entirely and never had autism. Autism can never be cured... just the quality of life improved with early and continuing intervention (which our society often does not even want to pay for). One day there may be a "cure" but as of today, we have a bunch of studies with educated guesses and wishful thinking and a group of us parents struggling to do the very best for our kids and hoping for the best possible outcome within this unknown. This is NOT cancer. This is not an allergy. We don't know what it is and my guess is for many, it is something different. It could be a birth defect, it could be a nutritional issue, it could be a birth injury, it could be a genetic issue or it could be none of the above. We just do not know! With some cancer's, they can pinpoint it and fix it. Do not compare the two. That is insulting.

There are respected, mainstream medical professionals who do not agree with you. There are kids who lose their DX and who improve enough that they are for all intents and purposes "cured."

We know so little about autism that to say that no one ever gets cured is ludicrous. People get better. Neuroplasticity is wonderful thing. Some people beat it.

[Anonymous]

My child happens to be one of the ones breaking through and I posted that so I do not understand your comment. I am very hopeful my child will be ok but as we go to services daily, I can see the wide variety of kids and how they and their families struggle. There is no cure - these kids can function better but they will still have their struggles. Until they find out the individual causes for why, then can never truly cure it. I believe in misdiagnosis as the reason not cure. You cure cancer or another medical issue. Autism is not something your cure.

Well, I am not a doctor, so I can't speak to whether it is being cured or simply treated and managed to make the child's life better for them, but what difference does the semantics of cure vs. treat make? I just want my kid to be happier.

[Anonymous]

And it's not cancer. It is a brain disorder, like a brain injury or having a stroke. There are many, many people in the world who recover from a brain injury or stroke. Most don't recover fully, but some approach a full recovery. It takes a lot of luck for that to happen, but who the fuck are you to tell people that their kid can't be the one in a million who gets lucky?

I'm sorry that your kid didn't recover as much as you hoped, but other people have had better luck.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Kids can't "lose" an autism diagnosis. That's sort of like saying in the middle of a gestational period, that a woman is no longer pregnant. If they no longer had a diagnosis of autism, it's likely they were misdiagnosed to begin with.

Children can show very autistic like behavior but not have full blown autism.

Stupid, stupid researchers out there and doctors diagnosing our children.

And WHO are you PP? People figure out medical things all the time. Jeez, there is no reason to believe there will be no progress in autism. I'm glad there are people out there with open, inquisitive minds willing to work on things like this.

Who am I? I'm a parent of an autistic child who has probably ever therapy known from the age of two on. I left my legal career to do nothing but help my child and I left no stone unturned. My child was very high functioning to begin with and, despite all efforts, we see very little difference. My husband is a doctor who sees children with ASD all the time also. I never stated there would no progress in autism, simply that progress will not be enough to take you out of the diagnosis. It will not. So fuck you for your attitude and ignorance. When you have tried every known therapy or treatment, then write on this thread.

Just because you have an autistic child does not mean you have a crystal ball. Thank goodness your negative attitude will not stop others from searching for answers.

There are no answers. Just interventions, wild educated guesses and pure luck. She is sad, exhausted and really struggling. Till you have been there, do not judge.

There are no answers NOW. We hope -- I see you are without hope but others still have hope -- that there will be answers, cures and ways to prevent it in the future. That's what the article was about -- that there may be cures.

My child happens to be one of the ones breaking through and I posted that so I do not understand your comment. I am very hopeful my child will be ok but as we go to services daily, I can see the wide variety of kids and how they and their families struggle. There is no cure - these kids can function better but they will still have their struggles. Until they find out the individual causes for why, then can never truly cure it. I believe in misdiagnosis as the reason not cure. You cure cancer or another medical issue. Autism is not something your cure.

NP. My child will probably lose the diagnosis at some point but he was always "mild": He has ASD/Asperger's, diagnosed at 4 yrs old - his main issue was that he would not engage with other kids. Always did fine with adults, eye contact is normal, has good emotional regulation for someone his age, does not get in trouble at school, fine with transitions. He goes to a mainstream school where he does well socially and academically with an IEP. We only get therapy at school, social skills classes and OT which seems to be enough although I will be asking for more PT which he got when he was in preK and k.

Do I think he'll be "cured"? Of course not... I just have to look at DH, his brother and his father who obviously compensates for their "Aspie" tendencies. DH, his brother and father are all Ivy grads with graduate degrees and careers so "high functioning" by any definition but that's not at all uncommon with Asperger's since the diagnosis did not appear in the DSM-4 until 1994 and was made a part of Autism Spectrum Disorder in the DSM-5 in 2013.

I think it's wonderful that there are kids who have moderate/severe autism but lose their autism diagnosis completely. Hopefully, science can figure out what separates these kids from others that do not.

[Anonymous]

Anonymous wrote:And it's not cancer. It is a brain disorder, like a brain injury or having a stroke. There are many, many people in the world who recover from a brain injury or stroke. Most don't recover fully, but some approach a full recovery. It takes a lot of luck for that to happen, but who the fuck are you to tell people that their kid can't be the one in a million who gets lucky?

I'm sorry that your kid didn't recover as much as you hoped, but other people have had better luck.

Again, this isn't the same. You are comparing apples to oranges. You are really minimizing the situation. You cannot recover from autism. If you do, you were misdiagnosed.

[Anonymous]

And it's not cancer. It is a brain disorder, like a brain injury or having a stroke. There are many, many people in the world who recover from a brain injury or stroke. Most don't recover fully, but some approach a full recovery. It takes a lot of luck for that to happen, but who the fuck are you to tell people that their kid can't be the one in a million who gets lucky?

I'm sorry that your kid didn't recover as much as you hoped, but other people have had better luck.


Again, this isn't the same. You are comparing apples to oranges. You are really minimizing the situation. You cannot recover from autism. If you do, you were misdiagnosed.

Well, you are welcome to your opinion, but I am going to wait and see what medical professionals who specialize in the diagnosis and treatment of autism say on the issue as additional research is done.

[Anonymous]

Anonymous wrote:

My child happens to be one of the ones breaking through and I posted that so I do not understand your comment. I am very hopeful my child will be ok but as we go to services daily, I can see the wide variety of kids and how they and their families struggle. There is no cure - these kids can function better but they will still have their struggles. Until they find out the individual causes for why, then can never truly cure it. I believe in misdiagnosis as the reason not cure. You cure cancer or another medical issue. Autism is not something your cure.

Well, I am not a doctor, so I can't speak to whether it is being cured or simply treated and managed to make the child's life better for them, but what difference does the semantics of cure vs. treat make? I just want my kid to be happier.

+1 And well-adjusted, and self-sufficient, able to live a fulfilling independent life as an adult.

[Anonymous]

NP here. I'm honestly baffled by all the people who so vehemently and automatically reject the findings of respected researchers who conducted controlled studies. To just knee-jerk say "Oh, well, obviously, the findings of the researchers are wrong and some people were just misdiagnosed at the beginning" seems to me to be a condescending and willful disregard for science. I for one am willing to trust experienced scientific researchers. If they say a tiny subset can be cured, I believe them. I sincerely don't understand why others aren't willing to do so. No one is saying that many kids get cured. Is is really so outside the realm of the possible that a tiny percentage could be for reasons as yet unknown??

[Anonymous]

As a preschool special education teacher this article makes a lot of sense. I can have two kids with very similar test scores/profiles (on paper) at the beginning of starting their journey with us and then have one make tremendous progress and the other won't. Some kids really respond to treatment and we see rapid growth. It's hard to predict which kids this will happen to but it absolutely incredible when it does and completely heartbreaking when it doesn't.

[Anonymous]

Anonymous wrote:

Anonymous wrote:And it's not cancer. It is a brain disorder, like a brain injury or having a stroke. There are many, many people in the world who recover from a brain injury or stroke. Most don't recover fully, but some approach a full recovery. It takes a lot of luck for that to happen, but who the fuck are you to tell people that their kid can't be the one in a million who gets lucky?

I'm sorry that your kid didn't recover as much as you hoped, but other people have had better luck.

Again, this isn't the same. You are comparing apples to oranges. You are really minimizing the situation. You cannot recover from autism. If you do, you were misdiagnosed.

No where in the diagnostic criteria for autism spectrum disorders is the label "uncurable." It's not a diagnostic criteria.

There is good research that shows that a small percentage of kids recover. Most kids don't recover fully, but that isn't a reason to tell other parents that their child is hopeless. Early diagnosis and intensive intervention create optimal outcomes and allow a small number of kids to lose the diagnosis. At least some of those kids are not misdiagnosed.

There is a good summary here: http://link.springer.com/article/10.1007/s10803-006-0340-6

Another good study by John Hopkins researchers found that about 4% of kids diagnosed before age 3 move out of the diagnosis. (They didn't have an opinion on misdiagnosis vs. benefits of early intervention.)

http://www.ncbi.nlm.nih.gov/pubmed/22580734

For kids who move out of the diagnostic criteria there are several factors which seem to appear: 1) they have normal (or better) IQ; 2) they are more towards the HFA/Asperger's/PDD-NOS end of the diagnostic criteria; 3) they have better muscle control; 4) they get intensive early intervention.







There also isn't evidence that shows that ASDs are diagnosed in numbers as high as the percentage of kids who move off the spectrum (7 to 17%).

[Anonymous]

Anonymous wrote:NP here. I'm honestly baffled by all the people who so vehemently and automatically reject the findings of respected researchers who conducted controlled studies. To just knee-jerk say "Oh, well, obviously, the findings of the researchers are wrong and some people were just misdiagnosed at the beginning" seems to me to be a condescending and willful disregard for science. I for one am willing to trust experienced scientific researchers. If they say a tiny subset can be cured, I believe them. I sincerely don't understand why others aren't willing to do so. No one is saying that many kids get cured. Is is really so outside the realm of the possible that a tiny percentage could be for reasons as yet unknown??

It's a control issue and lack of acceptance. Educated, strong, powerful parents have a hard time accepting that they are essentially powerless to determine the outcomes for their children, beyond throwing them in intensive therapy and hoping for the best. "I did everything right. If I couldn't cure my kid, then nobody can cure their kid."

It doesn't work that way. Getting better has a huge luck component to it. That's hard to deal with, if you are a Type A parent.

[Anonymous]

Anonymous wrote:NP here. I'm honestly baffled by all the people who so vehemently and automatically reject the findings of respected researchers who conducted controlled studies. To just knee-jerk say "Oh, well, obviously, the findings of the researchers are wrong and some people were just misdiagnosed at the beginning" seems to me to be a condescending and willful disregard for science. I for one am willing to trust experienced scientific researchers. If they say a tiny subset can be cured, I believe them. I sincerely don't understand why others aren't willing to do so. No one is saying that many kids get cured. Is is really so outside the realm of the possible that a tiny percentage could be for reasons as yet unknown??

Kids get misdiagnosed. Diagnoising is a bunch of educated guesses looking at behaviors presented. There is no blood test or other concrete test. These kids could have a number of things and instead they are all lumped together and it is labeled "autism." Science is not exact. Much is still unknown. Studies just look at those willing to participate and its not even a full view, but usually just a small grouping of people impacted. True autism cannot be cured. Kids moving off of autism were probably never autistic in the first place and it was something else that they were able to move past (like speech issues that look like autism). We have a yearly 45 minute appointment with a developmental ped who refuses to talk to the therapists, the school or any other family. He spends 5 minutes with my child going over IQ tests that my child (who can spend an hour in therapy no problem) refuses to do as he is not comfortable with the evaluator. Do I trust those diagnosing like that... absolutely not. Why don't we go to someone else? That is all our insurance pays for and with all the private therapies we do, it isn't in the budget and it doesn't matter except to help get services paid for. Studies are a joke. They are not exact science. They are interviews and some exams with a grouping of people and it is their best educated guesses. Many studies have proven wrong or bias. When there is real testing then I will agree with why. We brought up real concerns to the doctor of why and they were all dismissed.

[Anonymous]

Anonymous wrote:

Anonymous wrote:NP here. I'm honestly baffled by all the people who so vehemently and automatically reject the findings of respected researchers who conducted controlled studies. To just knee-jerk say "Oh, well, obviously, the findings of the researchers are wrong and some people were just misdiagnosed at the beginning" seems to me to be a condescending and willful disregard for science. I for one am willing to trust experienced scientific researchers. If they say a tiny subset can be cured, I believe them. I sincerely don't understand why others aren't willing to do so. No one is saying that many kids get cured. Is is really so outside the realm of the possible that a tiny percentage could be for reasons as yet unknown??

It's a control issue and lack of acceptance. Educated, strong, powerful parents have a hard time accepting that they are essentially powerless to determine the outcomes for their children, beyond throwing them in intensive therapy and hoping for the best. "I did everything right. If I couldn't cure my kid, then nobody can cure their kid."

It doesn't work that way. Getting better has a huge luck component to it. That's hard to deal with, if you are a Type A parent.

I am not a Type A parent but its still hard. You spend every day running to therapies that are touted as the best and thousands of dollars a month and honestly, I don't know if any of it helps. For us, I think it is true luck. I see benefits in therapy but even if we didn't have these issues, I see the benefits, but for us, it is not the magic solution of fixing. For severe kids, yes, I can see how it would help more. Doc's make you feel guilty if you are not in 40 hours of services or we'd pull back more for typical things as that is where we should be now. But, if we pull out, we lose our insurance funding so we cannot win.

[Anonymous]

Anonymous wrote:

Anonymous wrote:NP here. I'm honestly baffled by all the people who so vehemently and automatically reject the findings of respected researchers who conducted controlled studies. To just knee-jerk say "Oh, well, obviously, the findings of the researchers are wrong and some people were just misdiagnosed at the beginning" seems to me to be a condescending and willful disregard for science. I for one am willing to trust experienced scientific researchers. If they say a tiny subset can be cured, I believe them. I sincerely don't understand why others aren't willing to do so. No one is saying that many kids get cured. Is is really so outside the realm of the possible that a tiny percentage could be for reasons as yet unknown??

Kids get misdiagnosed. Diagnoising is a bunch of educated guesses looking at behaviors presented. There is no blood test or other concrete test. These kids could have a number of things and instead they are all lumped together and it is labeled "autism." Science is not exact. Much is still unknown. Studies just look at those willing to participate and its not even a full view, but usually just a small grouping of people impacted. True autism cannot be cured. Kids moving off of autism were probably never autistic in the first place and it was something else that they were able to move past (like speech issues that look like autism). We have a yearly 45 minute appointment with a developmental ped who refuses to talk to the therapists, the school or any other family. He spends 5 minutes with my child going over IQ tests that my child (who can spend an hour in therapy no problem) refuses to do as he is not comfortable with the evaluator. Do I trust those diagnosing like that... absolutely not. Why don't we go to someone else? That is all our insurance pays for and with all the private therapies we do, it isn't in the budget and it doesn't matter except to help get services paid for. Studies are a joke. They are not exact science. They are interviews and some exams with a grouping of people and it is their best educated guesses. Many studies have proven wrong or bias. When there is real testing then I will agree with why. We brought up real concerns to the doctor of why and they were all dismissed.

If you give kids an IQ test, an ADI-R, and an ADOS, you get a high degree of reliability in ASD diagnosis. These DXs are really stable over time.