Anonymous
Post 08/05/2014 21:23     Subject: Re:The Kids Who Beat Autism: New York Times
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.


Its also a cost issue. ABA is very expensive so its no surprise very few kids are getting it.
Anonymous
Post 08/05/2014 21:20     Subject: The Kids Who Beat Autism: New York Times
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.
Anonymous
Post 08/05/2014 21:15     Subject: Re:The Kids Who Beat Autism: New York Times
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.
Anonymous
Post 08/05/2014 20:02     Subject: Re:The Kids Who Beat Autism: New York Times
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.
Anonymous
Post 08/05/2014 19:10     Subject: The Kids Who Beat Autism: New York Times
Anonymous wrote:
Anonymous wrote:And for those who say 'it's wiring of the brain and can't be changes' - here is scientific proof that ESDM (naturalistic ABA intervention for young toddlers) is associated with changes in brain function and normalized patterns of brain activity.

http://www.autismspeaks.org/about-us/press-releases/early-intervention-improves-social-skills-brain-activity-autism

http://www.ncbi.nlm.nih.gov/pubmed/23101741

Also, there's been a lot of promising research done in the past decade, new, improved types of interventions, as well as increased awareness of the importance of early evaluation and Dx. I think kids diagnosed today have a better chance of good outcomes than kids from the previous generation.


A good portion of the kids who lost their diagnosis had NO behavioral therapy, though.


I know. For some reason, just like NT kids, some ASD kids develop coping skills much better than others; but losing the diagnosis without therapy happens very rarely, doesn't it? Most kids with optimal outcome have intensive early intervention.
Anonymous
Post 08/05/2014 18:20     Subject: The Kids Who Beat Autism: New York Times
Anonymous wrote:And for those who say 'it's wiring of the brain and can't be changes' - here is scientific proof that ESDM (naturalistic ABA intervention for young toddlers) is associated with changes in brain function and normalized patterns of brain activity.

http://www.autismspeaks.org/about-us/press-releases/early-intervention-improves-social-skills-brain-activity-autism

http://www.ncbi.nlm.nih.gov/pubmed/23101741

Also, there's been a lot of promising research done in the past decade, new, improved types of interventions, as well as increased awareness of the importance of early evaluation and Dx. I think kids diagnosed today have a better chance of good outcomes than kids from the previous generation.


A good portion of the kids who lost their diagnosis had NO behavioral therapy, though.
Anonymous
Post 08/05/2014 17:51     Subject: The Kids Who Beat Autism: New York Times
And for those who say 'it's wiring of the brain and can't be changes' - here is scientific proof that ESDM (naturalistic ABA intervention for young toddlers) is associated with changes in brain function and normalized patterns of brain activity.

http://www.autismspeaks.org/about-us/press-releases/early-intervention-improves-social-skills-brain-activity-autism

http://www.ncbi.nlm.nih.gov/pubmed/23101741

Also, there's been a lot of promising research done in the past decade, new, improved types of interventions, as well as increased awareness of the importance of early evaluation and Dx. I think kids diagnosed today have a better chance of good outcomes than kids from the previous generation.
Anonymous
Post 08/05/2014 16:03     Subject: The Kids Who Beat Autism: New York Times
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.


Ah, crazy MERLD lady here. And it's an important fact to know since you constantly hold it up as the "gold standard" but fail to mention its limitations.

I agree that there is a line, and some people will fall on once side or the other, depending on who is doing the evaluating, as it's quite subjective.

But the kids in this story were severely autistic, so it's another ballgame altogether, and a great first step.



Glad to see you again!

BTW, ADOS (with ADI-R) is the "gold standard" for diagnosing ASD. I'm not the one who invented the term.
Anonymous
Post 08/05/2014 15:54     Subject: The Kids Who Beat Autism: New York Times
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.


Ah, crazy MERLD lady here. And it's an important fact to know since you constantly hold it up as the "gold standard" but fail to mention its limitations.

I agree that there is a line, and some people will fall on once side or the other, depending on who is doing the evaluating, as it's quite subjective.

But the kids in this story were severely autistic, so it's another ballgame altogether, and a great first step.

Anonymous
Post 08/05/2014 15:32     Subject: The Kids Who Beat Autism: New York Times
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.


The kids in the article who were no longer autistic were not of the "barely met criteria" variety. Their symptoms were severe.


And they got their diagnosis at 3 yrs old and under which generally means that they were in the moderate/severe end of the spectrum. It's great news! I don't understand all the controversy at all.

So some kids lose their ASD diagnosis, good for them!
Anonymous
Post 08/05/2014 15:29     Subject: The Kids Who Beat Autism: New York Times
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.
Anonymous
Post 08/05/2014 15:12     Subject: The Kids Who Beat Autism: New York Times
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.


The kids in the article who were no longer autistic were not of the "barely met criteria" variety. Their symptoms were severe.
Anonymous
Post 08/05/2014 14:45     Subject: The Kids Who Beat Autism: New York Times
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.
Anonymous
Post 08/05/2014 14:42     Subject: Re:The Kids Who Beat Autism: New York Times
Anonymous wrote:BTW, IQ is an important predictor for all kids with developmental disabilities and learning disabilities. The higher the IQ, the more likely you are to have a positive outcome. That is true for language delays, dyslexia, ADHD, etc. IQ makes a huge difference.

There really isn't good data for kids with ASD who have IQ scores over 100. Most studies look at outcomes for kids with IQs "above 85" (ie in the "dull normal" range and above) and below 85.


Probably because it is near impossible to do an IQ test on the kids. We did testing and the ped gave up and said average on the report but his belief was much higher. I don't get the comment beyond it is common sense - anyone with a higher IQ regardless will probably have greater success.
Anonymous
Post 08/05/2014 10:58     Subject: Re:The Kids Who Beat Autism: New York Times
BTW, IQ is an important predictor for all kids with developmental disabilities and learning disabilities. The higher the IQ, the more likely you are to have a positive outcome. That is true for language delays, dyslexia, ADHD, etc. IQ makes a huge difference.

There really isn't good data for kids with ASD who have IQ scores over 100. Most studies look at outcomes for kids with IQs "above 85" (ie in the "dull normal" range and above) and below 85.