The Kids Who Beat Autism: New York Times

[Anonymous]

Anonymous wrote:Wow, a whole 119 kids compared to the 1 in 68 children identified with autism...

http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

OP, this is a diagnosis issue (or misdiagnosis) not kids "beating" or "overcoming" autism.

If you read, you will see that these individuals were carefully reviewed prior to tracking in the study.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Wow, a whole 119 kids compared to the 1 in 68 children identified with autism...

http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

OP, this is a diagnosis issue (or misdiagnosis) not kids "beating" or "overcoming" autism.

If you read, you will see that these individuals were carefully reviewed prior to tracking in the study.

It's a very limited study. 119 kids is a drop in the bucket. These kids are not cured and still have traits. They may have had the same prognosis without services. It is impossible to say.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It is a spectrum so there is a grey area where some symptoms still exist but the patient no longer qualifies for an ASD diagnosis.

It was explained after our ADOS testing and scoring that our child "just" made it into an ASD diagnosis. (And before the crazy MERLD person comes after me about how ADOS does not work evaluating kids with language delays - my kid has no language delays). But the bright line between an ASD diagnosis and "not ASD" has to be drawn somewhere. So it's not surpring that some kids make it over to the non-ASD side.

Is it a "cure"? Guess it depends on what you mean by that... Just b/c a person no longer qualifies for ASD does not mean that they are completely NT (and some ASD traits make for talent in many areas so you may want a little ASD anyway) but it does not mean they are "autistic" either.

Why be nasty and comment about speech delays if that is not your issue? That makes no sense. Those tests are very subjective.

B/c she pops up about ADOS not working for speech delayed kids. every. single. time. ADOS is mentioned.

Read what you wrote. She says it does not work for speech delayed kids. I agree with her. It gave us very inaccurate information an gave us an unneeded diagnosis and services forced on us (we quit but it was insisted we try them) that were unnecessary. Speech delayed kids are sometimes diagnosed as it is hard to get an accurate picture so it is easier to diagnose them with autism and move one (happened to us). Granted, many of the services are the same so does it matter? Yes, as people view your child very differently when you say speech delay vs. autism. We have noticed it. If we say autism, most people shy away. If we say speech delay, its no big deal.

Well, yeah. So that's why I put that my kid has no speech delay... There isn't any possibility of an ASD misdiagnosis from ADOS due to language delays in our case. My kid with ASD has no speech delays other than some pragmatic issues which aren't noticeable 3yrs after getting diagnosed and social skills classes. DS's neuropsych eval indicates expressive/receptive language as a strength... But DS definitely has ASD.

For the crazy MERLD lady, this is for you my friend: ADOS testing can sometimes misdiagnose kids with only speech delays as having ASD.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Wow, a whole 119 kids compared to the 1 in 68 children identified with autism...

http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

OP, this is a diagnosis issue (or misdiagnosis) not kids "beating" or "overcoming" autism.

If you read, you will see that these individuals were carefully reviewed prior to tracking in the study.

It's a very limited study. 119 kids is a drop in the bucket. These kids are not cured and still have traits. They may have had the same prognosis without services. It is impossible to say.

You're too much. I think most parents seeking to help their ASD kids would consider a loss of diagnosis while maintaining some traits/ quirks a HUGE success.

Besides, this is not the first study. A larger one (1300 kids) in 2012 showed even larger percentages of recovery - as high as 1/3. http://pediatrics.aappublications.org/content/early/2012/01/18/peds.2011-1717.abstract

Another study found a ~20% recovery rate, but I don't have time to locate it now.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Wow, a whole 119 kids compared to the 1 in 68 children identified with autism...

http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

OP, this is a diagnosis issue (or misdiagnosis) not kids "beating" or "overcoming" autism.

If you read, you will see that these individuals were carefully reviewed prior to tracking in the study.

It's a very limited study. 119 kids is a drop in the bucket. These kids are not cured and still have traits. They may have had the same prognosis without services. It is impossible to say.

So what if they have traits? Those are within the rage of normal. Not everyone is supposed to be exactly the same.

[Anonymous]

More than likely the kids who "recovered" probably have some disorder or another, e.g., Social Communication Pragmatics Disorder.

It just shows that intervention works.

[Anonymous]

Anonymous wrote:More than likely the kids who "recovered" probably have some disorder or another, e.g., Social Communication Pragmatics Disorder.

It just shows that intervention works.

another person who hasn't read the article.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Actually, in Lord's study, most kids didn't have the intensive therapy.

Only two of the eight no-longer-autistic children in Lord’s study received intensive behavioral therapy, because at the time it wasn’t commonly available where the research was conducted, in Illinois and North Carolina.

But how do they define intensive? My son does not have an ASD diagnosis but it has been suspected and at his developmental peds suggestion we started ABA. We did what we could manage, which was about 3-5 hours per week from age 12 months through 22 months, at which point we lost coverage for services. However, during that time he made so much incredible progress from the therapy that we knew we'd be ok without the ABA (though I still think he would have benefited from more ABA as it did wonders for him and we still use the techniques). So, my point is some kids respond so rapidly to lower levels of therapy, and that might not be captured in the study depending on how they define intensive.

+1
Some kids receive 40 hours of ABA a week.

I know kids who get 4-15 hours of ABA a week, plus developmental preschool, OT, PT and speech. Hardly a drop in the bucket.

[Anonymous]

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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.

Name those professionals who say Autism can be cured. Name them now. I will call them.

James Copland
http://www.drcoplan.com/

https://www.rethinkfirst.com/community/news/Story.aspx?ID=1008

Did you view the entire second link? Dr. Copland clearly states that just because many symptoms disappear does not mean the child is cured of ASD. In merely 15% of cases, symptoms do disappear but the child is not cured.

Yes, I've read it. He has a full explanation here:

http://www.psychologytoday.com/blog/making-sense-autistic-spectrum-disorders/201008/017-losing-the-asd-diagnosis-does-not-equal-cur

Quit moving the goal line. First you say that no kid with an autism spectrum disorder can lose their DX. According to you, if they do they were misdiagnosed. Now you say "Well, if they lose their DX, they are still not cured because they have residual symptoms."

THe goal line hasn't moved. You can't underboth that both can be true. Kids don't lose an ASD dx. If they do, they were likely misdx to begin with. If they lose most of their symptoms like Dr. Copland said is possible with 15% of them, they retain quirks and eccentricities.

[Anonymous]

Moreover, this applies to so few ASD children, theo ones with IQs over 100 so it doesn't make sense for every parent to hang onto this with hope. Majority of ASD children do not have IQs over 100.

[Anonymous]

THe goal line hasn't moved. You can't underboth that both can be true. Kids don't lose an ASD dx. If they do, they were likely misdx to begin with. If they lose most of their symptoms like Dr. Copland said is possible with 15% of them, they retain quirks and eccentricities.

Saying the same thing over and over does not give you any more credibility. What is your source? We have studies and experts telling us that some kids lose ASD diagnoses, vs. you, a stranger on the internet, repeatedly making a refutable, unsubstantiated claim. I'll believe the more credible sources.

[Anonymous]

Anonymous wrote:

Moreover, this applies to so few ASD children, theo ones with IQs over 100 so it doesn't make sense for every parent to hang onto this with hope. Majority of ASD children do not have IQs over 100.

Says who? Where?

[Anonymous]

Anonymous wrote:

Anonymous wrote:More than likely the kids who "recovered" probably have some disorder or another, e.g., Social Communication Pragmatics Disorder.

It just shows that intervention works.

another person who hasn't read the article.

Exactly. The studies mentioned in the article state that some kids lost their diagnosis with no interventions at all.

The article mentions two kids with the same severe autism who both received the same amount and kinds of therapies and while one recovered and lost his autism diagnosis, the other kid did not improve at all and remains severely autistic.

The entire point of the article was that there needs to be more studies on such disparate outcomes.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

Name those professionals who say Autism can be cured. Name them now. I will call them.

James Copland
http://www.drcoplan.com/

https://www.rethinkfirst.com/community/news/Story.aspx?ID=1008

Did you view the entire second link? Dr. Copland clearly states that just because many symptoms disappear does not mean the child is cured of ASD. In merely 15% of cases, symptoms do disappear but the child is not cured.

Yes, I've read it. He has a full explanation here:

http://www.psychologytoday.com/blog/making-sense-autistic-spectrum-disorders/201008/017-losing-the-asd-diagnosis-does-not-equal-cur

Quit moving the goal line. First you say that no kid with an autism spectrum disorder can lose their DX. According to you, if they do they were misdiagnosed. Now you say "Well, if they lose their DX, they are still not cured because they have residual symptoms."

THe goal line hasn't moved. You can't underboth that both can be true. Kids don't lose an ASD dx. If they do, they were likely misdx to begin with. If they lose most of their symptoms like Dr. Copland said is possible with 15% of them, they retain quirks and eccentricities.

Apparently you have a definition of ASD that says its forever. Therefore any case where a person loses it was not really a case of ASD. Fine, but that is not the actual definition of ASD. It's just your definition and lord knows why you embraced it and why you insist others are supposed to embrace it, too.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Wow, a whole 119 kids compared to the 1 in 68 children identified with autism...

http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

OP, this is a diagnosis issue (or misdiagnosis) not kids "beating" or "overcoming" autism.

If you read, you will see that these individuals were carefully reviewed prior to tracking in the study.

It's a very limited study. 119 kids is a drop in the bucket. These kids are not cured and still have traits. They may have had the same prognosis without services. It is impossible to say.

You're too much. I think most parents seeking to help their ASD kids would consider a loss of diagnosis while maintaining some traits/ quirks a HUGE success.

Besides, this is not the first study. A larger one (1300 kids) in 2012 showed even larger percentages of recovery - as high as 1/3. http://pediatrics.aappublications.org/content/early/2012/01/18/peds.2011-1717.abstract

Another study found a ~20% recovery rate, but I don't have time to locate it now.

If they have quirks and traits and a history or autism, then they still have autism.