The Kids Who Beat Autism: New York Times

[Anonymous]

Forgot to add, nutritional supplements of purified omega 3s, and related fatty acids have anecdotally benefited MS patients and ADHD patients. We think those fats improve myelin build-up. It's not proven yet!!!

But, I still give my ADHD kid purified fish oil every morning... make sure it's certified by third party, you don't want to give them heavy metal poisoning.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Though many studies show that early intensive behavioral therapy significantly eases autism symptoms, most children who receive such therapy nevertheless remain autistic — and some who don’t get it nevertheless stop being autistic. 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.

In Fein’s study, children who lost the diagnosis were twice as likely to have received behavioral therapy as those who remained autistic; they also began therapy at a younger age and received more hours of it each week. But roughly one-quarter of Fein’s formerly autistic participants did not get any behavioral therapy, including a boy named Matt Tremblay.

Dip-shit, OP. Matt Tremblay did get behavioral therapy/ABA:
http://apps.beta620.nytimes.com/accessible_nytimes/Top+News/2014/08/03/magazine/the-kids-who-beat-autism.html

There is no cure for autism and therapy makes it better. Just b/c someone doesn't need behavioral therapy doesn't mean they're not autistic just higher functioning.

Also, a quarter of Fein's study population is 8.5, big whoop-dee-doo!

Matt received speech, occupational and physical therapy until he was 7 or 8. But he wasn’t given behavioral therapy because, his mother recalls, the pediatrician never suggested it and the schools in their town in upstate New York didn’t provide it.

It's in the NY Times article, that Tremblay received ABA:

"Im­pressed with B.'s im­prove­ment, both fam­ilies [Tremblay's and a woman going by her initials] hired A.B.A. spe­cial­ists from the Uni­ver­si­ty of Cal­i­for­nia, Los An­ge­les (where A.B.A. was de­vel­oped), for three days of train­ing. The cost was enor­mous, be­tween $10,000 and $15,000, cov­er­ing not on­ly the spe­cial­ists’ fees but al­so their air­fare and ho­tel stays. The spe­cial­ists spent hours watch­ing each boy, iden­ti­fy­ing his idio­syn­crasies and cre­at­ing a de­tailed set of re­sponses for his par­ents to use. The train­ers re­turned ev­ery cou­ple of months to work on a new phase, seek­ing to teach the boys not just how to use lan­guage but al­so how to mod­u­late their voices, how to en­gage in imagi­na­tive play, how to ges­ture and in­ter­pret the ges­tures of oth­ers. The fam­ilies al­so re­cruit­ed and trained peo­ple to pro­vide A.B.A. to their sons, so each boy re­ceived 35 hours a week of one-on-one ther­apy..."

http://apps.beta620.nytimes.com/accessible_nytimes/Top+News/2014/08/03/magazine/the-kids-who-beat-autism.html

[Anonymous]

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?

wow, that is crazy! So in "normal" adults if you learn a new skill, myelin builds up in that area of the brain?

[Anonymous]

Interesting, informative posts. Very refreshing.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

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.

^^ As the parent of a grown HFA, now "on the spectrum", I have to say, if your kid is autistic, you know it, and they don't outgrow it. it also becomes much more apparent as they grow and try to function in the real world, like college or jobs. We are just starting to learn just how crippled our DC is.

[Anonymous]

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?

[Anonymous]

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.

While I agree there is a lot of misdiagnosing going on, the kids in these stories were hardly borderline cases. And the researchers are respected, big name, longtime autism researchers who are at the forefront of autism study.

[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.

^^ As the parent of a grown HFA, now "on the spectrum", I have to say, if your kid is autistic, you know it, and they don't outgrow it. it also becomes much more apparent as they grow and try to function in the real world, like college or jobs. We are just starting to learn just how crippled our DC is.

So, we shouldn't treat kids with autism? If it can't be helped or cured, what's the point?

[Anonymous]

Anonymous wrote:Or maybe they weren't actually "autistic" and therapy works?

Maybe they are autistic and therapy works. Neuroplasticity is a wonderful thing, especially in children.

[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.

While I agree there is a lot of misdiagnosing going on, the kids in these stories were hardly borderline cases. And the researchers are respected, big name, longtime autism researchers who are at the forefront of autism study.

Those kids had true autism and were lucky that good interventions and strong parents were able to help them be successful but they clearly still have high functioning autism and traits. It was a nice article showing how early intervention can be a positive force and why it is worth it. With that said, there is a lot of misdiagnosis as many things at a young age look very similar. I don't think kids outgrow it. You either have it or you don't and there is misdiagnosis as diagnosis are educated guesses based off of the information we see and are present rather than an exact science. There are checklists and observations, no medical tests to prove what it is.

For some kids, it could be as simple as diet or nutritional issues but for others, we just don't know.

[Anonymous]

Just because you lose your ASD diagnosis doesn't mean you are cured. Kids who outgrow or lose their ASD diagnosis typically have other on-going mental health issues.

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

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Though many studies show that early intensive behavioral therapy significantly eases autism symptoms, most children who receive such therapy nevertheless remain autistic — and some who don’t get it nevertheless stop being autistic. 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.

In Fein’s study, children who lost the diagnosis were twice as likely to have received behavioral therapy as those who remained autistic; they also began therapy at a younger age and received more hours of it each week. But roughly one-quarter of Fein’s formerly autistic participants did not get any behavioral therapy, including a boy named Matt Tremblay.

Dip-shit, OP. Matt Tremblay did get behavioral therapy/ABA:
http://apps.beta620.nytimes.com/accessible_nytimes/Top+News/2014/08/03/magazine/the-kids-who-beat-autism.html

There is no cure for autism and therapy makes it better. Just b/c someone doesn't need behavioral therapy doesn't mean they're not autistic just higher functioning.

Also, a quarter of Fein's study population is 8.5, big whoop-dee-doo!

Matt received speech, occupational and physical therapy until he was 7 or 8. But he wasn’t given behavioral therapy because, his mother recalls, the pediatrician never suggested it and the schools in their town in upstate New York didn’t provide it.

It's in the NY Times article, that Tremblay received ABA:

"Im­pressed with B.'s im­prove­ment, both fam­ilies [Tremblay's and a woman going by her initials] hired A.B.A. spe­cial­ists from the Uni­ver­si­ty of Cal­i­for­nia, Los An­ge­les (where A.B.A. was de­vel­oped), for three days of train­ing. The cost was enor­mous, be­tween $10,000 and $15,000, cov­er­ing not on­ly the spe­cial­ists’ fees but al­so their air­fare and ho­tel stays. The spe­cial­ists spent hours watch­ing each boy, iden­ti­fy­ing his idio­syn­crasies and cre­at­ing a de­tailed set of re­sponses for his par­ents to use. The train­ers re­turned ev­ery cou­ple of months to work on a new phase, seek­ing to teach the boys not just how to use lan­guage but al­so how to mod­u­late their voices, how to en­gage in imagi­na­tive play, how to ges­ture and in­ter­pret the ges­tures of oth­ers. The fam­ilies al­so re­cruit­ed and trained peo­ple to pro­vide A.B.A. to their sons, so each boy re­ceived 35 hours a week of one-on-one ther­apy..."

http://apps.beta620.nytimes.com/accessible_nytimes/Top+News/2014/08/03/magazine/the-kids-who-beat-autism.html

WHy do you think the woman at the start of the story (going by initiais for privacy) is Matt Tremblay's mother interviewed in her real name at the end of the story? That makes no sense.

[Anonymous]

While he seems like a fairly typical geeky teenager now, it took years of hard work to get here. Just before he turned 3, he received a diagnosis of medium to severe autism. He showed no apparent interest in those around him and seemed to understand few words. He threw stunning tantrums. And even when he didn’t seem angry, he would run headlong into walls and fall over, then get up and do it again, like a robot programmed to repeat the same pattern eternally, seemingly impervious to pain despite the bruises spreading across his forehead.

Mark’s parents, Cynthia and Kevin, sent him to their district’s preschool for developmentally delayed children, where he was placed in the highest-functioning class. But he only got worse, having more fits and losing even more language. Within a few months, he was moved to the lowest-functioning class. Cynthia said a neurologist told her to be prepared to someday institutionalize her only child.

In desperation, the Macluskies pulled Mark from school. They took out a $100,000 second mortgage so Cynthia could quit her job in human resources to work full time with Mark, even though she was the primary breadwinner. She scoured the Internet for guidance and vowed to try whatever might possibly work, as long as it didn’t sound dangerous. She gave her son shots of vitamin B-12 and started him on a dairy-free, gluten-free and soy-free diet. She read books on various behavioral therapies, choosing what she liked and then training herself, because the family couldn’t afford to hire professionals. In the end, Cynthia cobbled together a 40-hour-per-week behavioral program, on top of the five hours a week of speech and occupational therapy that the state provided.

They were difficult years. Early on, Mark would hurl eggs at the wall and pour milk on the floor, so the Macluskies padlocked the refrigerator with a heavy chain. They emptied their living room of furniture, replacing it with an inflatable trampoline encircled by rubber walls so that Mark could whap against them to get the sensory input he seemed to need without hurting himself. They made clear to Mark that if he wanted something to eat or drink, he would get it only if he conveyed his desires by using words or sign language or pointing to the relevant flashcard.

Continue reading the main story
Cynthia decided to keep home-schooling Mark, having concluded that traditional school wouldn’t sufficiently address his weaknesses or recognize his strengths. By the time he turned 8, his speech and behavior were on par with peers, but his social thinking remained classically autistic. “I sort of knew there were rules, but I just couldn’t remember what those rules were,” he told me recently by video chat. “It was hard to remember what you’re supposed to do and what you’re not supposed to do when you’re interacting with people.” He rarely noticed social cues, and he couldn’t interpret them when he did. He was too rough, too tactile, too quick to intrude into other people’s personal space.

Cynthia set out to address his social delays. She watched DVR recordings of “Leave It to Beaver” with Mark, stopping every few minutes to ask him to predict what might happen next, or what he thought Beaver was thinking, or why June reacted the way she did. When they had watched every episode, they moved on to “Little House on the Prairie” so Mark could practice reading facial expressions. “I remember it being hard to answer my mom’s questions and being confused when I watched those shows. I knew she was doing all those things for a reason,” he said appreciatively. “I just didn’t know how it was going to help.”

At parks and restaurants, they watched the faces of passers-by and played social detective, with Cynthia asking Mark to find clues to people’s relationships or emotions. “He didn’t seem to learn that stuff through osmosis like other kids do, so I’d have to walk him through it each time till he got it.”

Around that time, his parents gave him a robot kit for Christmas, and he fell madly in love with it. Eager to find opportunities for Mark to practice socializing, Cynthia formed a robot club: Mark and four typically developing children, meeting in the Macluskies’ living room two afternoons a week. At first they just built robots, but soon the five children began writing programming code and entering competitions. Two years ago, Mark made it to the robotics world competition. There he was partnered randomly with teenagers from Singapore and had to strategize with them on the fly. They won several rounds. By then, it had been three years since a specialist concluded that despite some lingering social deficits, Mark no longer met the criteria for autism. As Cynthia watched how well Mark worked with his teammates at that competition, she began sobbing so hard that she had to leave the auditorium.

The parents (especially Mom) of Mark seem like they worked with him very very very intensively, for years. Just because he seems to not be autistic now, is no reason to say that he never was! What was all that work for, if not to help him recover?