The Kids Who Beat Autism: New York Times

[Anonymous]

Anonymous wrote:

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%).

Are the studies talking about Asperger's/PDD-NOS as part of ASD or just Kanner autism? All the kids I know with a Asperger's or PDD-NOS dx, now ASD, all got there diagnosis when they are older, 4+ yrs old. I read elsewhere that the avg age of an Asperger's dx was 8 yrs old although there is now a push to find these kids earlier so they can get early intervention.

I'll be honest, I wouldn't be able to tell if these kids at our school had any diagnosis at all if not told by their parents... and I'm not the only one either b/c many had gone to another charter, Bridges, for preK3 and that school which is known for their SNs services had not been concerned enough to suggest an evaluation or interventions.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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%).

fixed. makes me crazy.

Are the studies talking about Asperger's/PDD-NOS as part of ASD or just Kanner autism? All the kids I know with a Asperger's or PDD-NOS dx, now ASD, all got their diagnosis when they are older, 4+ yrs old. I read elsewhere that the avg age of an Asperger's dx was 8 yrs old although there is now a push to find these kids earlier so they can get early intervention.

I'll be honest, I wouldn't be able to tell if these kids at our school had any diagnosis at all if not told by their parents... and I'm not the only one either b/c many had gone to another charter, Bridges, for preK3 and that school which is known for their SNs services had not been concerned enough to suggest an evaluation or interventions.

[Anonymous]

Are the studies talking about Asperger's/PDD-NOS as part of ASD or just Kanner autism? All the kids I know with a Asperger's or PDD-NOS dx, now ASD, all got there diagnosis when they are older, 4+ yrs old. I read elsewhere that the avg age of an Asperger's dx was 8 yrs old although there is now a push to find these kids earlier so they can get early intervention.

I'll be honest, I wouldn't be able to tell if these kids at our school had any diagnosis at all if not told by their parents... and I'm not the only one either b/c many had gone to another charter, Bridges, for preK3 and that school which is known for their SNs services had not been concerned enough to suggest an evaluation or interventions.

We have younger kids so I only know kids getting diagnosed at between 2-4. Mainly at 2-3 as the parents are all very proactive. You basically need a diagnosis to get services. Right now, the easiest way to get all services is to have an autism diagnosis. Our insurance will not pay for anything or very little without an autism diagnosis. With insurance, we can get anything from ABA to speech to OT to PT.

[Anonymous]

Anonymous wrote:

Are the studies talking about Asperger's/PDD-NOS as part of ASD or just Kanner autism? All the kids I know with a Asperger's or PDD-NOS dx, now ASD, all got there diagnosis when they are older, 4+ yrs old. I read elsewhere that the avg age of an Asperger's dx was 8 yrs old although there is now a push to find these kids earlier so they can get early intervention.

I'll be honest, I wouldn't be able to tell if these kids at our school had any diagnosis at all if not told by their parents... and I'm not the only one either b/c many had gone to another charter, Bridges, for preK3 and that school which is known for their SNs services had not been concerned enough to suggest an evaluation or interventions.

We have younger kids so I only know kids getting diagnosed at between 2-4. Mainly at 2-3 as the parents are all very proactive. You basically need a diagnosis to get services. Right now, the easiest way to get all services is to have an autism diagnosis. Our insurance will not pay for anything or very little without an autism diagnosis. With insurance, we can get anything from ABA to speech to OT to PT.

Most of them focus on the stability of diagnosis before 36 months of age.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Are the studies talking about Asperger's/PDD-NOS as part of ASD or just Kanner autism? All the kids I know with a Asperger's or PDD-NOS dx, now ASD, all got there diagnosis when they are older, 4+ yrs old. I read elsewhere that the avg age of an Asperger's dx was 8 yrs old although there is now a push to find these kids earlier so they can get early intervention.

I'll be honest, I wouldn't be able to tell if these kids at our school had any diagnosis at all if not told by their parents... and I'm not the only one either b/c many had gone to another charter, Bridges, for preK3 and that school which is known for their SNs services had not been concerned enough to suggest an evaluation or interventions.

Most of them focus on the stability of diagnosis before 36 months of age.

[Anonymous]

It is pretty clear to me that many children diagnosed with autism in their early years do not actually have autism...no wonder it 'goes away' later. Real autism is not curable. With lots of hard work autistic people (high functioning, not severely autistic btw.) can APPEAR as if they don't have autism. But for them that just means constantly working their behind off day in and day out to keep their symptoms in check. It's sad that this kind of 'research' doesn't only give false hope but also may lead to people saying to autistic people 'If only you had worked harder, you'd be fine now'...pretty horrible IMO.

[Anonymous]

Anonymous wrote:It is pretty clear to me that many children diagnosed with autism in their early years do not actually have autism...no wonder it 'goes away' later. Real autism is not curable. With lots of hard work autistic people (high functioning, not severely autistic btw.) can APPEAR as if they don't have autism. But for them that just means constantly working their behind off day in and day out to keep their symptoms in check. It's sad that this kind of 'research' doesn't only give false hope but also may lead to people saying to autistic people 'If only you had worked harder, you'd be fine now'...pretty horrible IMO.

Normally, I would agree. But one of these researchers is the creator of the ADOS, so she's hardly a fly-by-night researcher.

It may well be we are calling separate things autism, and that's why ABA works for some but not others. But cancer treatments work for some but not others as well. Research like this is important to unlocking what is going on.

[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??

+1, which is why I discount those posts.

[Anonymous]

Anonymous wrote:It is pretty clear to me that many children diagnosed with autism in their early years do not actually have autism...no wonder it 'goes away' later. Real autism is not curable. With lots of hard work autistic people (high functioning, not severely autistic btw.) can APPEAR as if they don't have autism. But for them that just means constantly working their behind off day in and day out to keep their symptoms in check. It's sad that this kind of 'research' doesn't only give false hope but also may lead to people saying to autistic people 'If only you had worked harder, you'd be fine now'...pretty horrible IMO.

To echo a PP: where does DSM define ASD as incurable? Why do you think that's a defining characteristic of ASD? After all, it's a diagnosis based on symptoms.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It is pretty clear to me that many children diagnosed with autism in their early years do not actually have autism...no wonder it 'goes away' later. Real autism is not curable. With lots of hard work autistic people (high functioning, not severely autistic btw.) can APPEAR as if they don't have autism. But for them that just means constantly working their behind off day in and day out to keep their symptoms in check. It's sad that this kind of 'research' doesn't only give false hope but also may lead to people saying to autistic people 'If only you had worked harder, you'd be fine now'...pretty horrible IMO.

To echo a PP: where does DSM define ASD as incurable? Why do you think that's a defining characteristic of ASD? After all, it's a diagnosis based on symptoms.

Because, if it is curable, then it isn't autism. Look at what autism truly is. Those kids in the article were not cured. It is a misleading title. They have made significant progress but they still have quirks. Anyone cured or outgrows it, especially in the younger years, probably never had it. Many things like MERLD, social communication disorder and others also look and have some of the same features of ASD and are often confused.

[Anonymous]

So what if he's not completely "cured" and still has a few quirks:

http://www.huffingtonpost.com/2013/05/11/jacob-barnett-autistic-14-year-old-nobel-prize_n_3254920.html

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It is pretty clear to me that many children diagnosed with autism in their early years do not actually have autism...no wonder it 'goes away' later. Real autism is not curable. With lots of hard work autistic people (high functioning, not severely autistic btw.) can APPEAR as if they don't have autism. But for them that just means constantly working their behind off day in and day out to keep their symptoms in check. It's sad that this kind of 'research' doesn't only give false hope but also may lead to people saying to autistic people 'If only you had worked harder, you'd be fine now'...pretty horrible IMO.

To echo a PP: where does DSM define ASD as incurable? Why do you think that's a defining characteristic of ASD? After all, it's a diagnosis based on symptoms.

Because, if it is curable, then it isn't autism. Look at what autism truly is. Those kids in the article were not cured. It is a misleading title. They have made significant progress but they still have quirks. Anyone cured or outgrows it, especially in the younger years, probably never had it. Many things like MERLD, social communication disorder and others also look and have some of the same features of ASD and are often confused.

My question still stands. DSM and Autism Speaks do not define ASD as incurable. The criteria are behavioral: impairments in communication, social interaction, and restrictive/ repetitive patterns of behavior.

To go from non-verbal, smearing feces on the wall to "having quirks" is cured, or pretty close to it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It is pretty clear to me that many children diagnosed with autism in their early years do not actually have autism...no wonder it 'goes away' later. Real autism is not curable. With lots of hard work autistic people (high functioning, not severely autistic btw.) can APPEAR as if they don't have autism. But for them that just means constantly working their behind off day in and day out to keep their symptoms in check. It's sad that this kind of 'research' doesn't only give false hope but also may lead to people saying to autistic people 'If only you had worked harder, you'd be fine now'...pretty horrible IMO.

To echo a PP: where does DSM define ASD as incurable? Why do you think that's a defining characteristic of ASD? After all, it's a diagnosis based on symptoms.

Because, if it is curable, then it isn't autism. Look at what autism truly is. Those kids in the article were not cured. It is a misleading title. They have made significant progress but they still have quirks. Anyone cured or outgrows it, especially in the younger years, probably never had it. Many things like MERLD, social communication disorder and others also look and have some of the same features of ASD and are often confused.

That's completely circular logic.

What autism "truly is" is a triad of deficits in social and emotional areas, language and communication, and flexibility of thought. It is primarily a neurological disorder. Because it is appears in children, it is highly susceptible to early intervention. Children's brains are highly plastic. Early intensive intervention brings tremendous improvement and for some children (especially if they were mildly affected to start out with) it may result in them losing the diagnosis.

Neuroplasticity is truly amazing. There are kids with severe epilepsy who have had one entire HALF of their brain removed to stop the seizures and they continue to live and grow up and function. Because the surgery occurs at an early age, there is little to no change in brain function, including cognitive ability, personality, humor, or memory. These patients become normal adults and attend college. The remaining hemisphere assumes all of the functions of the whole brain.

If neuroplasticity can do that, then asking if treatment can cure some kids of austism spectrum disorders is silly. Of course it can.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It is pretty clear to me that many children diagnosed with autism in their early years do not actually have autism...no wonder it 'goes away' later. Real autism is not curable. With lots of hard work autistic people (high functioning, not severely autistic btw.) can APPEAR as if they don't have autism. But for them that just means constantly working their behind off day in and day out to keep their symptoms in check. It's sad that this kind of 'research' doesn't only give false hope but also may lead to people saying to autistic people 'If only you had worked harder, you'd be fine now'...pretty horrible IMO.

To echo a PP: where does DSM define ASD as incurable? Why do you think that's a defining characteristic of ASD? After all, it's a diagnosis based on symptoms.

Because, if it is curable, then it isn't autism. Look at what autism truly is. Those kids in the article were not cured. It is a misleading title. They have made significant progress but they still have quirks. Anyone cured or outgrows it, especially in the younger years, probably never had it. Many things like MERLD, social communication disorder and others also look and have some of the same features of ASD and are often confused.

That's completely circular logic.

What autism "truly is" is a triad of deficits in social and emotional areas, language and communication, and flexibility of thought. It is primarily a neurological disorder. Because it is appears in children, it is highly susceptible to early intervention. Children's brains are highly plastic. Early intensive intervention brings tremendous improvement and for some children (especially if they were mildly affected to start out with) it may result in them losing the diagnosis.

Neuroplasticity is truly amazing. There are kids with severe epilepsy who have had one entire HALF of their brain removed to stop the seizures and they continue to live and grow up and function. Because the surgery occurs at an early age, there is little to no change in brain function, including cognitive ability, personality, humor, or memory. These patients become normal adults and attend college. The remaining hemisphere assumes all of the functions of the whole brain.

If neuroplasticity can do that, then asking if treatment can cure some kids of austism spectrum disorders is silly. Of course it can.

No its not. Sometimes doctors are wrong. A lot of medical diagnosis have the same characteristics but are different things. So, then how to do explain the kids who don't get early intervention services and till outgrow the diagnosis. They don't know what autism is. Right now it is just a grouping of "symptoms" and "behaviors' that are out of the norm for what our culture considers normal. Its very subjective to the evaluator which is why you go to 10 evaluators and you will get 10 different opinions. If we went to a different evaluator, we would lose our diagnosis and that person, like our therapists would question the initial doctor. Do you realize these kids are getting diagnosed with a doctor or other person looking at them for 10-45 minutes - some have several hour or day evaluations but many of us have 10 minute evaluations and the doctors do not talk to the teachers, therapist or anyone else involved. Our last evaluation was 30 minutes, 10 of which was with my child. My child took that time to warm up and was not interested so the doctor made all kinds of inferences from that (even though he can easily do a 60 minute speech, OT or other appointment that he enjoys). There is not enough criteria, there are not enough medical tests and there is not enough evidence to truly know what this is to lump it all together except for insurance reasons (as it is one of the main things they are throwing money at right now for therapies).

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It is pretty clear to me that many children diagnosed with autism in their early years do not actually have autism...no wonder it 'goes away' later. Real autism is not curable. With lots of hard work autistic people (high functioning, not severely autistic btw.) can APPEAR as if they don't have autism. But for them that just means constantly working their behind off day in and day out to keep their symptoms in check. It's sad that this kind of 'research' doesn't only give false hope but also may lead to people saying to autistic people 'If only you had worked harder, you'd be fine now'...pretty horrible IMO.

To echo a PP: where does DSM define ASD as incurable? Why do you think that's a defining characteristic of ASD? After all, it's a diagnosis based on symptoms.

Because, if it is curable, then it isn't autism. Look at what autism truly is. Those kids in the article were not cured. It is a misleading title. They have made significant progress but they still have quirks. Anyone cured or outgrows it, especially in the younger years, probably never had it. Many things like MERLD, social communication disorder and others also look and have some of the same features of ASD and are often confused.

My question still stands. DSM and Autism Speaks do not define ASD as incurable. The criteria are behavioral: impairments in communication, social interaction, and restrictive/ repetitive patterns of behavior.

To go from non-verbal, smearing feces on the wall to "having quirks" is cured, or pretty close to it.

Since when do all kids smear feces on the wall and all the ideas that you have about it. My kid is no different from any other child, and if anything may be easier and more well behaved. How do you explain non-verbal kids talking and catching up? Its called a speech delay. Kids who smear feces and have such serious behaviors could also have a mental health or other issue as well. It may be curable but they need to find out where it comes from in order to cure it and target that.