The Kids Who Beat Autism: New York Times

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
As a research scientist in biology, I do not doubt that some children with severe symptoms of classical autism can get better. I also don't doubt that they are in the minority.

We don't yet know what causes autism. I've often wondered myself if there is a link to proper or improper myelinization of the brain.

We may also find, as in inattentive and hyperactive types of ADHD, that different types of autism have actually little to do with each other, and that some have a better prognosis than others.

Do you mind explaining this, and also what would cause it?

Oh, it's purely hypothetical on my part.
Myelin is the fat layer that envelops nerves to increase conductivity, and therefore efficiency of messaging between neurons. It is highly specific yet develops in a very predictable way in normal brains: practicing a specific skill makes more myelin layers in that particular neuronal circuit, making it even faster and highly tuned. This is how infants learn to walk and talk. By dint of listening, observing and imitating sounds or movements, they build up myelin in those circuits and eventually master walking or talking. Same for playing violin or chess.
However, if you don't use that circuit, the myelin degrades. "Practice makes perfect" describes it well.
Perhaps in atypical brains such ADHD and autistic brains, myelin cannot build up in the typical way, even with intense therapeutic focus on certain skill acquisition. There would be a kind of myelin block upstream.
Multiple sclerosis is an autoimmune disease in which myelin is progressively destroyed. So myelin could play a role in other brain diseases.

Very fuzzy-wuzzy, isn't it? We're only just realizing the immense power and ramifications of myelin, and studies are pretty thin on the ground. You know Einstein is supposed to have had enormous quantities of it in his brain, whereas his neuron mass was exactly the same as an average brain?

I'm not an expert but did work with the severely autistic many years ago. UCLA researchers were finally dumping the frigid mother theory and working on the myelinated sheath theory. This would have been in the late 70s. I thought (??) we were well through that theory and had moved on to a number of others, including inhalation of car exhaust and now working on the age of the father's sperm. Am I wrong?

I'm the scientist who responded earlier.

As long as cause is not pinpointed and the exact workings of a disease are not fully established, ALL theories are still on the table.
There have been times in the history of science when what was thought to be the most ridiculous theory turned out to be true - Galileo's hypothesis that the Earth revolved around the Sun, and not the opposite, for instance. He sure suffered for that one!

And yes, to answer a PP, myelin can build-up to shore up a circuit at any age. However it is recognized that children's brain growth make them more sensitive to rapid build-up of myelin, and that after a certain age, 50 or so, myelin starts to degrade faster. Hence the common wisdom of learning when you're young. Brain plasticity as someone else pointed out is a wonderful thing - people with brain damage have relearnt essential skills by bypassing the damaged circuits and building myelin in other circuits.
It has also been shown that neurodegenerative diseases affect those with lower IQs in more rapid and visible ways. Those with higher IQs (more myelin, although of course there is more to IQ than myelin) have more "padding" and buy themselves more time before Parkinson's or Alzheimer's starts to affect their cognitive processes in ways that can be measured by standard tests.

Anyway, it's all fascinating and we need more funding for research. The NIH is begging for more money for their huge brain study, but funds are not forthcoming right now.

[Anonymous]

It is fascinating. The brain plasticity point makes me thing of stroke victims or those with brain injury (like Gabby Giffords) -- the brain can repair itself, to a certain extent, with the right amount of training and inputs. It doesn't meant that the deficit wasn't there to begin with. I'm sure 50 years ago, doctors would have said that Congresswoman Giffords would never talk again. I've started reading all this stuff about brain development just as a mom, but now I wish I'd known how interesting it was back when I was in college and deciding what to do with my life!

As for the NIH brain study, ABC and Grey's Anatomy should kick in some money, since they've now made it a major plot point on the show. I wonder if the NIH PR folks planted that story idea to try to generate public support? If so, good for them!

[Anonymous]

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.

[Anonymous]

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.

Not sure what any of this has to do with the article. It may be that some forms of autism respond much better to treatment than others. You seem to take that as a criticism that you haven't done enough. Not sure why that is, but your experience is your experience and actually has very little bearing on what is reported in the article.

[Anonymous]

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.

Not sure what any of this has to do with the article. It may be that some forms of autism respond much better to treatment than others. You seem to take that as a criticism that you haven't done enough. Not sure why that is, but your experience is your experience and actually has very little bearing on what is reported in the article.

The article is very clear that some kids respond better to interventions while others do not. I wouldn't be surprised if there are many different types of "autism" caused by different things so it's not surprising that some variants are more curable (or even outgrown) than others.

[Anonymous]

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.

[Anonymous]

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.

Not sure what any of this has to do with the article. It may be that some forms of autism respond much better to treatment than others. You seem to take that as a criticism that you haven't done enough. Not sure why that is, but your experience is your experience and actually has very little bearing on what is reported in the article.

The article is very clear that some kids respond better to interventions while others do not. I wouldn't be surprised if there are many different types of "autism" caused by different things so it's not surprising that some variants are more curable (or even outgrown) than others.

This is why lumping together all these similar characteristics is a problem. We have done therapies and they did help. We tried aba but did not find it more than ot and speech as we did not have other issues as the doc tried to tell us we did. Sometimes as a parent no matter how much you try, it may not help. They do not know what air ism is and I think it is an after product of a variety of things. For us, we had medical issues at birth and possible drug exposure. Doc ruled that stuff out but I disagree. Genetic testing came up with nothing. It's hard. They do not know what it is and the fix is interventions, some which work and others do not depending on the child.

To the parent who posted upset. Till someone is in your shoes they will not get it. They are not part of that core group of parents running to evaluations, schools, therapies and activities that consume your life. They are not the ones where other parents and kids dismiss you and your kid as lessor. They are not exhausted with worry about their child being able to function alone in the world when you die. I get those comments but I took the article as support for why more funding and help is needed. I went into reading it annoyed at the title as those kids are not cured. They are just the lucky ones who could pull out of it better than others. They are far from cured.

[Anonymous]

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.

[Anonymous]

Thank you for posting this article, it gives me a glimmer of hope. When my 3 yr old son was diagnosed with autism I started going to support groups. I was shell shocked to hear other moms talk about their older autistic kids, it made me think "Well I guess this is the direction my son is heading and this is what I can expect". It's taken a long time to come to terms with it and accept it. It's good to know that some kids can beat autism. I just need to do all I can for my son, pray and hope for the best.

[Anonymous]

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.

I'm sorry that your child did not progress enough to not lose a DX. That doesn't mean it never happens, though. Your child is a single case study.

No one is saying that you could have cured your child if you just tried harder. It doesn't work that way. Parents do their best and often do more than their best by sacrificing their health, their careers, and their financial stability, and what happens, happens.

I appreciate that your husband is a doctor. Other doctors who specialize in autism see kids who lose the DX, though.

"Losing the DX," though shouldn't be the be-all and end-all, anyway. Kids who progress out of the ASD DX are not cured. They continue to have life-long problems within the Broad Autism Phenotype.

[Anonymous]

Anonymous wrote:Thank you for posting this article, it gives me a glimmer of hope. When my 3 yr old son was diagnosed with autism I started going to support groups. I was shell shocked to hear other moms talk about their older autistic kids, it made me think "Well I guess this is the direction my son is heading and this is what I can expect". It's taken a long time to come to terms with it and accept it. It's good to know that some kids can beat autism. I just need to do all I can for my son, pray and hope for the best.

These kids aren't beating autism. That's a very strong wording for it. The interventions and their particular circumstances have allowed them to be much high functioning from where they started at three. The kids who truly beat it are probably kids who were misdiagnosed. Those kids are doing well in the article but if you read it closely, they still have features of high functioning autism. Most likely they will do well or well enough in life, but they certainly haven't beat it. We have an autism diagnosis. Where my child was at 3 at the diagnosis is very different than now at almost 5. Anything is possible for these kids. We have developmental delays but our diagnosis makes no sense. I would never consider my child beating autism if he outgrows the concerns. I consider it a misdiagnosis as that minimizes kids with autism (some of whom progress very well considering the challenges they face). Bottomline is at this young of an age, we just don't know and it is anyone's educated guess of what and why is going on. Don't underestimate your child and don't accept the minimum. Some kids just need time, support and the right help (obviously it is not the case for all, even with parents doing everything right).

[Anonymous]

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.

[Anonymous]

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.

[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.

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.)

[Anonymous]

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.