First, have you read Dual-diagnosis and misdiagnosis of gifted (something like that). If you haven't, please give that a read. Good book that talks about, well obviously, the dual and misdiagnois of gifted kids.

My oldest child....I've looked into asperger's, SPD, ADHD/ADD, visual-spatial, apraxia of speech, bipolar, gifted, etc....

I haven't done an IQ test, and most likely will not, but she has been tested by the school as gifted via CoGat. Not really an IQ test, but not an achievement test either. If anything... a test that would not catch kids as opposed to giving erranous results.

So, at a bare minimum she is gifted and has strong OE's (dabrowski overexitabilies). She has a few asperger's possible quirks, BUT nothing strong enough where she truly fits it.
For now, the only label she has, has to do with speech. Not delayed speech, but delayed pronunciation, and some poor oral motor issues.

I will not test for anything else, unless it becomes necessary....mainly b/c I do not believe anyone would be able to diagnose her accurately. If she was any of the above (besides the gifted)... with as much reading as I've done, it should be more obvious.

Tammy

 

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Originally Posted by quaz First, have you read Dual-diagnosis and misdiagnosis of gifted (something like that). If you haven't, please give that a read. Good book that talks about, well obviously, the dual and misdiagnois of gifted kids. My oldest child....I've looked into asperger's, SPD, ADHD/ADD, visual-spatial, apraxia of speech, bipolar, gifted, etc.... I haven't done an IQ test, and most likely will not, but she has been tested by the school as gifted via CoGat. Not really an IQ test, but not an achievement test either. If anything... a test that would not catch kids as opposed to giving erranous results. So, at a bare minimum she is gifted and has strong OE's (dabrowski overexitabilies). She has a few asperger's possible quirks, BUT nothing strong enough where she truly fits it. For now, the only label she has, has to do with speech. Not delayed speech, but delayed pronunciation, and some poor oral motor issues. I will not test for anything else, unless it becomes necessary....mainly b/c I do not believe anyone would be able to diagnose her accurately. If she was any of the above (besides the gifted)... with as much reading as I've done, it should be more obvious. Tammy

Thank you. I will take a look at those books. I agree with what you said about testing. We haven't done it, and most likely will not. I was surprised that The Einstein Syndrome book I read talked about IQ testing. I didn't think that was routinely done anymore.

 

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Originally Posted by That Is Nice Thank you. I will take a look at those books. I agree with what you said about testing. We haven't done it, and most likely will not. I was surprised that The Einstein Syndrome book I read talked about IQ testing. I didn't think that was routinely done anymore.

Routinely? I don;t think it's ever been routinely done, but IQ testing is still quite common.

I'm trying to understand your question here: Are you concerned about whether or not the results of testing/intervention will be accurate, and/or have a positive effect on your child? Do you think that having a diagnosis of autism, for example, would be detrimental in terms of his possible giftedness, or vice versa?

 

FWIW I'm on an email list called Natural Late Talkers that is based on Sowell's work. Here's the link
http://health.groups.yahoo.com/group...alLateTalkers/

I haven't really found the list to be very helpful. My DD has had very atypical development and there is really a range of kids on there, many of whom don't fit the criteria.

I think one important difference is what the *receptive* language ability is. There are some late talkers who CLEARLY are understanding what is happening around them. Then there are kids like my DD who just don't seem to get it but who it is clear are busy thinking really intricate thoughts and just seem kind of out of step....

My DD seems to have APD - but she's had a language burst in the last few months that almost puts her in the "normal" range of language (she is 4.5) but it's just so darn atypical STILL. I'm not even sure it's APD anymore because she seems to finally get things the first time now - which I think kids with APD still struggle with that all the time....

She's an extremely concrete thinker and it's clear that she is noticing alot of stuff the rest of us are tuning out. She has clearly been the brightest in all of her special day classes and academic things come easily to her - assuming she cares to learn it at all. The things she attends to, she gets. It's just that her attention always seems somewhere else. And she's taking in information in a very different way than you or I. And she is not autistic.

It's hard to describe. Anyway I ramble but I guess I'm just wondering about the usefulness of a "syndrome" to describe kids who are all so very different. Her development is certainly very different from a child who is "getting" alot more but is having trouble developing language....

It's reassuring to think that your child might "self-correct" as many of the Einstein children are said to do but my thought was, well if the additional support is there for you, why not take it? How can it hurt? But waiting to see if the child will develop later on their own is a big risk because then they are just that much further behind if you decide they are not going to get it themselves....those early building blocks are so important for later skills that I just felt it was important to do what we could...

That said, the language bursts my child has had seems to have very little to do with the therapies she has received. The therapies have helped her attention and helped her with motor skills and has helped with modeling language....but when the burst comes it's like she gains several months of development overnight.....so she might have seemed to "self-correct" in the end...but at least in the meantime she's gotten a clue and a half about what the rest of the world is doing, sort of....

I know this is rambling, but I guess I think the 2E "label" is really more useful for us. That lets us address her issues better within the school system. I don't think most school districts recognize the Einstein syndrome as valid....

Does this help? check out the mailing list and they might be able to answer your questions better....
peace,
robyn

 

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Originally Posted by hippymomma69 FWIW I'm on an email list called Natural Late Talkers that is based on Sowell's work. Here's the link http://health.groups.yahoo.com/group...alLateTalkers/ I haven't really found the list to be very helpful. My DD has had very atypical development and there is really a range of kids on there, many of whom don't fit the criteria. I think one important difference is what the *receptive* language ability is. There are some late talkers who CLEARLY are understanding what is happening around them. Then there are kids like my DD who just don't seem to get it but who it is clear are busy thinking really intricate thoughts and just seem kind of out of step.... My DD seems to have APD - but she's had a language burst in the last few months that almost puts her in the "normal" range of language (she is 4.5) but it's just so darn atypical STILL. I'm not even sure it's APD anymore because she seems to finally get things the first time now - which I think kids with APD still struggle with that all the time.... She's an extremely concrete thinker and it's clear that she is noticing alot of stuff the rest of us are tuning out. She has clearly been the brightest in all of her special day classes and academic things come easily to her - assuming she cares to learn it at all. The things she attends to, she gets. It's just that her attention always seems somewhere else. And she's taking in information in a very different way than you or I. And she is not autistic. It's hard to describe. Anyway I ramble but I guess I'm just wondering about the usefulness of a "syndrome" to describe kids who are all so very different. Her development is certainly very different from a child who is "getting" alot more but is having trouble developing language.... It's reassuring to think that your child might "self-correct" as many of the Einstein children are said to do but my thought was, well if the additional support is there for you, why not take it? How can it hurt? But waiting to see if the child will develop later on their own is a big risk because then they are just that much further behind if you decide they are not going to get it themselves....those early building blocks are so important for later skills that I just felt it was important to do what we could... That said, the language bursts my child has had seems to have very little to do with the therapies she has received. The therapies have helped her attention and helped her with motor skills and has helped with modeling language....but when the burst comes it's like she gains several months of development overnight.....so she might have seemed to "self-correct" in the end...but at least in the meantime she's gotten a clue and a half about what the rest of the world is doing, sort of.... I know this is rambling, but I guess I think the 2E "label" is really more useful for us. That lets us address her issues better within the school system. I don't think most school districts recognize the Einstein syndrome as valid.... Does this help? check out the mailing list and they might be able to answer your questions better.... peace, robyn

Thanks. Yes, this makes sense. I'm not sure how helpful a label or a diagnosis is either. The only reason I'm exploring testing of different types is to figure out what the best response is. I don't want to go down the wrong path, thinking one thing, and then a year or more from now, find out there were better answers out there, we just overlooked something because we didn't ask the right questions, if that makes sense.

 

Here are two of the original threads:
http://www.mothering.com/discussions...stein+syndrome
http://www.mothering.com/discussions...stein+syndrome

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Also, has anyone skipped the early intervention due to the concerns of doing more harm than good?

I didn't willingly skip the early intervention but in Germany (where we lived until recently) there is only EI for the most severe cases (children with no responsive communication). I dragged my poor DS around to one doctor after another and they basically all just

and told me to go home. They said they'd ask about his speech at his 3 year checkup and to chill. According to them, the whole EI-craze in America is like the autism craze, the Ritalin craze and the anti-depressant-craze: a big waste of money that was doing more harm than good. They said that 75% of the kids started talking by 3 yo and the rest afterwards would get helped.
BTW, the doctors over there are really pissed off about this kind of thing because a lot of German schools are trying to circumvent the pediatricians to get Ritalin and such for "unruly" students. It's become a big problem now that they're cutting out the breaks from the school day in order to devote more time to academics. Sound familiar?
And they are absolutely horrified by this, as well.

I tell you, I was

:
But it turned out that they are completely right! I'm now convinced that a child who is responsive and otherwise healthy should not have EI until they are at least 3 yo. We have such a pressure to perform and "meet the standard" nowadays that we are torturing our children at younger and younger ages. It's become a pathology in and of itself and I'm relieved to finally be rid of it. It's been 3 long years, I tell you. But now I am free!

: My DS's personality is no longer a bone of contention in my household and we are all better off for it.

BTW, less than a month after the final teary-eyed "Will nobody help us?" session at our family doctor, my DS started speaking in both German and English. He now has a much larger vocabulary than most children his age although his grammar is always months behind (but improving steadily).

 

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Originally Posted by VanessaS Here are two of the original threads: http://www.mothering.com/discussions...stein+syndrome http://www.mothering.com/discussions...stein+syndrome I didn't willingly skip the early intervention but in Germany (where we lived until recently) there is only EI for the most severe cases (children with no responsive communication). I dragged my poor DS around to one doctor after another and they basically all just and told me to go home. They said they'd ask about his speech at his 3 year checkup and to chill. According to them, the whole EI-craze in America is like the autism craze, the Ritalin craze and the anti-depressant-craze: a big waste of money that was doing more harm than good. They said that 75% of the kids started talking by 3 yo and the rest afterwards would get helped. BTW, the doctors over there are really pissed off about this kind of thing because a lot of German schools are trying to circumvent the pediatricians to get Ritalin and such for "unruly" students. It's become a big problem now that they're cutting out the breaks from the school day in order to devote more time to academics. Sound familiar? And they are absolutely horrified by this, as well. I tell you, I was : But it turned out that they are completely right! I'm now convinced that a child who is responsive and otherwise healthy should not have EI until they are at least 3 yo. We have such a pressure to perform and "meet the standard" nowadays that we are torturing our children at younger and younger ages. It's become a pathology in and of itself and I'm relieved to finally be rid of it. It's been 3 long years, I tell you. But now I am free! : My DS's personality is no longer a bone of contention in my household and we are all better off for it. BTW, less than a month after the final teary-eyed "Will nobody help us?" session at our family doctor, my DS started speaking in both German and English. He now has a much larger vocabulary than most children his age although his grammar is always months behind (but improving steadily).

Thank you so much for this post! It's very helpful.

 

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Originally Posted by VanessaS I didn't willingly skip the early intervention but in Germany (where we lived until recently) there is only EI for the most severe cases (children with no responsive communication)...They said that 75% of the kids started talking by 3 yo and the rest afterwards would get helped.

Really? What about the children who are clearly different from birth, as most ASD children are? And the evidence that shows that EI is, in fact, effective? Does EI there only cover speech/communication issues, or physical & social ones as well? Honestly, to me that smacks of the same attitude that says children "aren't really gifted until second grade."

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BTW, the doctors over there are really pissed off about this kind of thing because a lot of German schools are trying to circumvent the pediatricians to get Ritalin and such for "unruly" students.

I don't quite understand the connection... but that's pretty common here as well. Many teachers think it's their place to suggest that a child ought to be diagnosed & drugged (and to lobby heavily for it) just because they don't want to deal with said child. This was one reason that I knew I couldn't send BeanBean to school; It's fairly clear that he doesn't have ADHD, but when you view his typical response to boredom in light of his obvious intellectual ability (rather than his size or his age) you get a child who appears to be unable to sit still. For a five year old boy, his behavior is entirely reasonable (and, indeed, to be expected) but for the ten year old he sounds like, his behavior would be entirely unacceptable.

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It's become a big problem now that they're cutting out the breaks from the school day in order to devote more time to academics. Sound familiar? And they are absolutely horrified by this, as well.

I'm the last person who'll tell you that American public schools are perfect... but again, what's the connection between this and EI services?

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But it turned out that they are completely right! I'm now convinced that a child who is responsive and otherwise healthy should not have EI until they are at least 3 yo.

In the case of your son, they were correct... but (and this is not to be rude at all) this is something akin to saying, "My gifted child was just fine waiting until third grade for the pull-out program." That will be true of some kids, but not most. Is it really fair to make everyone else wait until they're older? The fact is, Early Intervention is *only* for children aged 3 and under... so saying "Wait until they're three" is just saying "We don't want this particular system to deal with them." All it does is make the child (and often the parents) suffer for longer than necessary, and make the jobs of the folks who deal with older children more difficult. It just doesn't strike me as reasonable.

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We have such a pressure to perform and "meet the standard" nowadays that we are torturing our children at younger and younger ages. It's become a pathology in and of itself and I'm relieved to finally be rid of it.

Torture? Really? I don't see it that way at all... BizzyBug absolutely loved EI, and benefitted immensely from it. In fact, all of us learned a great deal from the experience. I had never heard of sensory processing disorder, but I recognized it instantly when BizzyBug's OT started talking about it. Her therapists were all able to help us make connections that allowed us to better understand not only BizzyBug, but ourselves. It was a very positive experience all around.

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BTW, less than a month after the final teary-eyed "Will nobody help us?" session at our family doctor, my DS started speaking in both German and English. He now has a much larger vocabulary than most children his age although his grammar is always months behind (but improving steadily).

If he qualified for speech therapy, and had been able to communicate more effectively sooner, how could that have been a bad thing? In this particular instance, I just don't understand the "let's wait and see" mentality.

 

Sowell's Einstein book is specifically written about a very small subset of children who are bright (above average intelligence) but talk late -- roughly 239 children. He states in the preface that there are many reasons why some children talk late, so the special set of children discussed in the book are children *that do not have disabilities* (including autism) but follow a unique developmental pattern.

Sowell also states that while there are children that may benefit from a do nothing and wait it out approach, "For other children -- perhaps most children who talk late -- early intervention may be the way to go. Children with characteristics discussed in this book are probably a minority among those who talk late."

In our experience with ds is that not only was he a late talker, but he also had oral motor issue that made him difficult to understand once he was speaking. These two issues - late talking and oral motor problems - were not necessarily related. We also have a family history of late talkers - DH and my nephew (my nephew, age 9.5, recently tested gifted.) DS is also quirky and had some autistic markers, but no medical professional that we took him to (our pediatrician, a pediatric neurologist, and a pediatric neuropsychologist) felt that he was anywhere near the autistic spectrum. Quirky - yes. Autistic - no.

That Is Nice -- You mention that you've taken him to several MD's and a PhD. Were these physicians qualified to make an autism diagnosis?
I do think that some physicians can get overly zealous with dx's, but if you've taken your dc to various doctors and they're all pointing to the same thing, you might want to consider that they are seeing something that you are not. What are the autistic markers that they are seeing?

 

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Originally Posted by LauraLoo Sowell's Einstein book is specifically written about a very small subset of children who are bright (above average intelligence) but talk late -- roughly 239 children. He states in the preface that there are many reasons why some children talk late, so the special set of children discussed in the book are children *that do not have disabilities* (including autism) but follow a unique developmental pattern. Sowell also states that while there are children that may benefit from a do nothing and wait it out approach, "For other children -- perhaps most children who talk late -- early intervention may be the way to go. Children with characteristics discussed in this book are probably a minority among those who talk late." In our experience with ds is that not only was he a late talker, but he also had oral motor issue that made him difficult to understand once he was speaking. These two issues - late talking and oral motor problems - were not necessarily related. We also have a family history of late talkers - DH and my nephew (my nephew, age 9.5, recently tested gifted.) DS is also quirky and had some autistic markers, but no medical professional that we took him to (our pediatrician, a pediatric neurologist, and a pediatric neuropsychologist) felt that he was anywhere near the autistic spectrum. Quirky - yes. Autistic - no.

:

 

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Originally Posted by VanessaS I They said that 75% of the kids started talking by 3 yo and the rest afterwards would get helped. .... BTW, less than a month after the final teary-eyed "Will nobody help us?" session at our family doctor, my DS started speaking in both German and English. He now has a much larger vocabulary than most children his age although his grammar is always months behind (but improving steadily).

OK, please don't take this the wrong way, but what if YOUR child had been one in the 25% group who still wasn't speaking? I'm not sure you would feel the same way.

I am right above the German border, and whether Danes want to admit it or not, the two groups share a lot of common characteristics. They also do the don't test until forever routine, it will go away by itself routine, there is no such thing as gifted because we are all equal routine... Yes, we have socialized medicine, which means EVERYONE gets access to care, and usually decent. But it isn't perfect. Sometimes the waiting list for a scan when you have cancer, and you can't wait, is pretty long..... I am not saying we should go the USA route, where those with insurance get every test done in the fear of a lawsuit and the ones without insurance get nothing. But reality is, neither system is completely flawed, nor completely perfect. I don't assume you feel this way either. But I do think that because your child fit well within that 75%, you were really OK with the German perspective.

 

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Originally Posted by LauraLoo You mention that you've taken him to several MD's and a PhD. Were these physicians qualified to make an autism diagnosis? I do think that some physicians can get overly zealous with dx's, but if you've taken your dc to various doctors and they're all pointing to the same thing, you might want to consider that they are seeing something that you are not. What are the autistic markers that they are seeing?

All the physicians and developmental specialists have basically identified the same markers, but they have been inconclusive about a diagnosis per se. They have all requested further evaluation, and sent us somewhere else with referrals.

Some of the physicians were MDs who specialize in developmental disorders, genetics, and one specifically on Autism and another one on late talking.

We also have issues (motor and otherwise) that are outside the spectrum, but often seen on the spectrum, just as you said. If it is indeed Autism, it is likely Autism and something else as well. There are connected but distinct delays and issues. Or maybe we'll get a diagnosis of pervasive developmental disorder non-specified...

At this point, we just haven't had any answers, just a lot of information and referrals.

 

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What about the children who are clearly different from birth, as most ASD children are?

I mentioned before that there is an exception for the most severe cases. All children in Germany visit a pediatrician for a well-baby checkup (with optional vaccines) every few weeks after birth and every few months and then every few years after that. Also, the mothers usually stay in the hospital or birthing center for a week after the birth (with rooming in of the babies) and the children and mothers are checked multiple times a day by the doctors and nurses to spot problems as early as possible (this is called the Wochenbett). In addition, a trained midwife visits all mothers at home at least once a week for a month or two after the birth (this was a great help with my breastfeeding struggles). Our family doctor and pediatrician KNEW my DS very well (as they knew all of us well) so it's not as if the doctors were strangers who hadn't been observing my children since birth.
The point of the German system is that there is no EI offered to children with speech delays who are otherwise healthy and developing well. They paid for me to take my DS to the pediatric dentist (to have his jaws checked), audiologist (to have his hearing checked), and multiple pediatricians (which cost the health system a not-small amount of money, so it's not like they were cheap with me). I must also add that every referral was followed by an appointment within 2 weeks so I can't concur with the statement.

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Sometimes the waiting list for a scan when you have cancer, and you can't wait, is pretty long

I (nor anyone else I've met in Bavaria, including numerous cancer patients) have never had a complaint about the excellent health care I received in Bavaria (other parts of Germany are not so good, I know). Lightening-quick response times, excellent staff, no waiting lists, state of the art treatment, generous hospital stays, etc. It's easily the best health care system in the world, IMO, and was one of the few things that I feel was better in Germany than in America (in Bowie, MD, you could die in the emergency room and no one would notice

.

In other words, in Germany you're more smothered with assistance than anything else. It's actually becoming a big topic there as some people are refusing the assistance and that makes Germans suspicious (as in, what are they hiding?). I wasn't meaning to say that no one was willing to evaluate my child but rather that no one was giving me the result (autism) that I assumed must be correct. I was going to the doctor with the old "Something's wrong with my son." complaint and they evaluated him and said, "He seems fine to me." And I was not satisfied with that answer (even though it turns out that they were right).
I am convinced (and have experience with other diseases) that American doctors are likely to sympathize for the need for a diagnosis and therefore come out with something wishy-washy "He's probably not autistic but there are aspects on the spectrum..." They can always make it sound very scientific. And I have the sneaking suspicion that somebody is earning a lot of money with all of these "spectrum" diagnosis for 2 yo. (Okay maybe that's a bit of a conspiracy theory but the whole ADHD "epidemic" makes me chronically suspicous.)

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OK, please don't take this the wrong way, but what if YOUR child had been one in the 25% group who still wasn't speaking? I'm not sure you would feel the same way.

I won't take it the wrong way. This is always a touchy subject and it's hard to speak plainly without offending people.
After my experience I strongly feel the best course of action is the German one. I believe that 3 yo is more than early enough for EI in everything but the most obvious cases.
I also am certain that there are not unlimited funds in the American health system. It is a finite well that we drink from and the money that could have been spent on helping my DS would have to have come from somewhere else.

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I don't quite understand the connection... This was one reason that I knew I couldn't send BeanBean to school

The connection is that I believe there is a chronic overdiagnosis of children with ADHD. You know, Rynna, that we definitely agree on this one. I, also, am not going to send my children to school for this reason (among others).

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Torture? Really? I don't see it that way at all...

The torture wasn't the treatment (as we didn't receive any, obviously) but the diagnosis. The doctors' visits, the tearfull evening conversations, Mommy scouring the country to find information on a diagnosis that wasn't correct, etc. It was a very stressful time for our whole family and I wished I'd taken my doctor's advice and just chilled.

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If he qualified for speech therapy, and had been able to communicate more effectively sooner, how could that have been a bad thing?

There was never any problem with his communication. That was the reason why the doctors always sent me home. He was very communicative, just not verbal.

 

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Sowell also states that while there are children that may benefit from a do nothing and wait it out approach, "For other children -- perhaps most children who talk late -- early intervention may be the way to go. Children with characteristics discussed in this book are probably a minority among those who talk late."

Yes, but Mr. Sowell's piont is that late-talking and very bright children are actually in the minority. Most late-talking children aren't gifted and their late-talking is therefore more of a concern. The children he describes are children who are otherwise communicative and very intelligent but speech-delayed. His book and these threads are definitely only referring to a subset of late-talkers.

 

Another thing was that my DS acted more "normally" during his evaluations than at home. I'll never forget the final pediatrician appointment before our move when he:

1) Walked into the room that the receptionist had told us to go to (he recognized the room number on the door)
2) Shook the doctor's hand, looked him in the eye and said, "Hallo!"
3) Answered all questions with clear guesstures and followed all instructions
4) And then walked over to the drawer where the doctor keeps his lollipops, pointed, and smiled at the doctor in a very clear request.
5) He even got a "thank you" out after receiving one and waved goodbye to the receptionist when we left.

I was so peeved. He was not cooperating! At any rate, the doctor thought I was a bit crazy after that visit. And I decided he just might be right. Rather than a 3 yo with autism, he had acted more like a 5 yo with a simple speech delay. I told my DH about it that night and he said, "Well, see. He can behave normally after all." I told him, "He was just putting on a show to impress the doctor." and then I realized that if he really had autism he probably wouldn't do that, would he.

I really was a bit crazy at the time. Kids will drive you insane...

 

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Originally Posted by VanessaS Yes, but Mr. Sowell's piont is that late-talking and very bright children are actually in the minority. Most late-talking children aren't gifted and their late-talking is therefore more of a concern. The children he describes are children who are otherwise communicative and very intelligent but speech-delayed. His book and these threads are definitely only referring to a subset of late-talkers.

Yes - and this was my point. This is a very small grouping of children who are bright/gifted and and are not talking. Sowell would have done a grave disservice if he didn't point this out lest others would hold on to the hope that their late-talking child was simply the next Einstein in the making.

 

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Originally Posted by VanessaS I was so peeved. He was not cooperating! At any rate, the doctor thought I was a bit crazy after that visit. And I decided he just might be right. Rather than a 3 yo with autism, he had acted more like a 5 yo with a simple speech delay.

LOL! Well, for our visit to the neurologist, ds actually licked a chair. Never did anything like this before, never has done it since. My feeling was that if this neurologist doesn't see the need to refer him on after this little incident - for anything - then I'll have to accept it as well.

 

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Originally Posted by VanessaS I mentioned before that there is an exception for the most severe cases.

You said that children who aren't speaking at all by the age of 3 are eligible for EI; I'm saying, when you're talking about something like autism there are often (always!) many other issues what come into play, and that some children, even with more severe autism, will have a small amount of speech (or even an above-average amount) long before the age of three.

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The point of the German system is that there is no EI offered to children with speech delays who are otherwise healthy and developing well. They paid for me to take my DS to the pediatric dentist (to have his jaws checked), audiologist (to have his hearing checked), and multiple pediatricians (which cost the health system a not-small amount of money, so it's not like they were cheap with me).

You mean they looked for reasons that your son might not be speaking, couldn't find any, and thus disqualified him for EI services-- that's different from saying that it was never offered, or that you were dismissed out of hand when you presented concerns. The doctor said, "I don't think there's anything wrong," and when you pressed, they made referrals to specialists. This is *exactly* what happens here as well, except that when parents are really concerned, they can choose to circumvent the doctor as well. When BooBah's doctor dismissed my concerns about her speech, I still called EI. They had her hearing checked even after their initial intake interview suggested that she probably did not qualify for services, because I did have a valid concern (BooBah has a congenital kidney defect, and those often go hand-in-hand with aural anomalies).

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I wasn't meaning to say that no one was willing to evaluate my child but rather that no one was giving me the result (autism) that I assumed must be correct. I was going to the doctor with the old "Something's wrong with my son." complaint and they evaluated him and said, "He seems fine to me." And I was not satisfied with that answer (even though it turns out that they were right).

A very different thing from "They won't do anything until a child is three." They didn't take a wait and see approach, they did a lot of other things, asked all of the relevant questions, and failed to give you the answer that you were looking for. That happens a lot when people have limited information, or for whatever reason are unwilling or unable to look outside of the box they've decided works. You're neither describing a problem with the American vs. the German system, nor a failure on the part of American doctors to get past the idea that everyone needs a diagnosis; To the contrary, you're saying that they do *exactly the same thing* over there, with regards to Early Intervention, that they do here.

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I am convinced (and have experience with other diseases) that American doctors are likely to sympathize for the need for a diagnosis and therefore come out with something wishy-washy "He's probably not autistic but there are aspects on the spectrum..." They can always make it sound very scientific.

Saying, "there are aspects on the spectrum" and then referring a child for further evaluation is not the same as "being wishy-washy" or even conceding the need for a diagnosis. All they're doing is recognizing that there are parents who just can't take "He's fine" for an answer. Your story illustrates the point beautifully. Maybe it's just that American doctors are more likely to be sensitive to parents than German ones (which I can easliy believe, as "She was mean to me!" is probably more likely to result in litigation here than there

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And I have the sneaking suspicion that somebody is earning a lot of money with all of these "spectrum" diagnosis for 2 yo. (Okay maybe that's a bit of a conspiracy theory but the whole ADHD "epidemic" makes me chronically suspicous.)

Someone's earning a ton of money, but it's not the doctors making the referrals or the EI specialists; It's people who prey on parents who are afraid and struggling to cope with a child who is a lot of work at the best of times. People selling snake oil have always been the ones to make money hand over fist... but that doesn't mean that autism is a scam, or that children who have autism spectrum disorders shouldn't have interventions provided to them. All it means is that more people need more information.

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After my experience I strongly feel the best course of action is the German one. I believe that 3 yo is more than early enough for EI in everything but the most obvious cases.

Your experience shows you that most children who don't talk don't have any other issues which might be addressed? I disagree-- it says just the opposite, that other issues should be considered and ruled out before a wait-and-see approach is taken. If there is absolutely no pathology of any kind, then fine-- wait. But don't rule out interventive services before you've ruled out other pathologies. That's just not rational, and it's clearly not in line with the way things are done in Germany.

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I also am certain that there are not unlimited funds in the American health system. It is a finite well that we drink from and the money that could have been spent on helping my DS would have to have come from somewhere else.

True-- the visits to the specialists would, indeed, have cost money somewhere along the line. The fact is, though, absolutely nothing would have been different for you here. Your son *was* communicating, and was clearly evidencing receptive understanding, he just wasn't *talking*. I'm not sure what you think would have been different here, but your son would never have received a diagnosis of autism. It's fairly clear from your description that he never met the criteria.

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The connection is that I believe there is a chronic overdiagnosis of children with ADHD. You know, Rynna, that we definitely agree on this one. I, also, am not going to send my children to school for this reason (among others).

Right-- but do you believe that there's a chronic overdiagnosis of autism spectrum disorders? Because I have to say, I've seen absolutely NO evidence of that.

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The torture wasn't the treatment (as we didn't receive any, obviously) but the diagnosis. The doctors' visits, the tearfull evening conversations, Mommy scouring the country to find information on a diagnosis that wasn't correct, etc. It was a very stressful time for our whole family and I wished I'd taken my doctor's advice and just chilled.

The torture (and I"m sorry to say this, please dont' take it the wrong way) was self-inflicted. I'm not one to just take a doctor's advice and chill, either, so I understand why that might have been difficult. What I don't understand is why they couldn't point you to diagnostic criteria and say, "This is what autism is," or to the Autism Speaks website to show you videos and say, "This is what autism looks like." You didn't have a diagnosis-- you had an idea in your head that didn't work, and you tried to cram your son into that box. That's the problem with researching things from the wrong end. If you had started with, "I don't know what's wrong with my child," you could have ruled out autism very quickly.

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There was never any problem with his communication. That was the reason why the doctors always sent me home. He was very communicative, just not verbal.

Right-- but in the case of a child that doctors are referring, consistantly, for further evaluation, I'd be willing to bet money that that's not the case. Why? Because, again, the diagnostic criteria are very clear on this particular aspect of autism. There must be "marked impairment" in order to make a diagnosis of autism spectrum disorder (except for Asperger's syndrome). All you have to do is look at the information.

 

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ds actually licked a chair

: My kids both do crazy stuff like that periodically. My DS has since explained to me that "It's fun." Whatever...

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You said that children who aren't speaking at all by the age of 3 are eligible for EI

What I meant was the above for cases where the children was otherwise normal and healthy. Their emphasis is on communication, not speech. And, like I said, they have the children checked for more physical problems like jaw development, hearing, and the like.
They do EI earlier for more severe cases of developmental delay. Beginning with birth. That's what all of the well-baby check-ups are for.

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except that when parents are really concerned, they can choose to circumvent the doctor as well

You can't do that there, although you could sue for treatment.

 

My major concern was that the doctors weren't taking my concerns seriously enough. My DS was acting sooo strangely (at least at home) that I was really concerned. And they had no alternative explanation to autism for his behaviour. Nobody even mentioned giftedness.

 

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Originally Posted by VanessaS What I meant was the above for cases where the children was otherwise normal and healthy. Their emphasis is on communication, not speech. And, like I said, they have the children checked for more physical problems like jaw development, hearing, and the like. They do EI earlier for more severe cases of developmental delay. Beginning with birth. That's what all of the well-baby check-ups are for.

I'm not sure what you think EI does in the US. They certainly don't diagnose anyone as autistic, though they can refer out. Each state has its own rules, and I only know the basic guidelines for a few places from experience. There are states that don't qualify kids based on expressive language delay at all unless there is something else going on. It sounds like exactly what happened for you - they take the kid if there are ongoing ear infections or a reason to think a medical/physical issue is causing the delay, but not if they are just expressively delayed. But - they do take them if they have a certain level of expressive + receptive delay. The state I know of that takes expressive-only kids has a certain level of delay needed to test in, and they re-test a couple times a year to make sure the child still needs therapy. They don't go around throwing services at random children whose parents are upset.

Honestly, I don't like the approach of waiting if a child understands but doesn't talk. You can have a kid who doesn't speak and doesn't catch up by 3 and at that point you not only have a kid who is more delayed than before, you also have a frustrated child, frustrated parents, and possibly a child who has developed very negative views and behaviors related to communication. The numbers I've read are much less favorable than 75-25, though still not terrible.

But think of a child who doesn't talk at age 3 - they can't play around with sounds the way other kids do. The other children are learning pre-academic concepts (whether we think that timing is good for their age or not) and they are working on "go" and "ball." To 'catch up' they have to learn more quickly than everyone else, and if they don't that gap just grows and grows. It's hard to maintain concept understanding and receptive language to age appropriate levels for that long with a child who can't talk/sign/use some symbolic communication system. Kids who have trouble learning to read are more likely than peers to be the kids who once had trouble learning to talk, and it's not just me saying that, it's from years of research which has been done.

If you can shrink or prevent that language gap by working with them at age 2 yrs, what's wrong with that? It saves money in the long run, in my opinion - money that may have needed to be spent for the kids who are not OK on years of speech/language therapy, reading specialists and other supports. I'm willing to have my taxes go to 6 months or a year of therapy for a toddler who doesn't speak, especially since if they didn't, a fair number of those kids would need more money to catch up, as much as possible anyway, later.

 

I enter this thread with some trepidation.

If you go through Dobrowski's Over Excitabilities, ds' got a lot of them. But the fact that they weren't getting better led me to seek an evaluation for him. Based on that evaluation, our son was diagnosed sensory processing issues (disorder if you like) that led us to seek occupational therapy for him at age 5. Our doctor thought we were slightly nuts, and I KNOW German doctors wouldn't have referred him at all. His issues weren't that "big". But, I'd done a lot of reading on the issue, and I clearly saw the signs running down both sides of our families - my brother, dh, dh's aunt, and most likely my MIL now that I recognize the signs of hyposensitivity and the motor planning issues (rather than the hypersensitivity that everyone else demonstrates). I also knew how difficult certain things in every day life were for them, and I could see that ds wasn't outgrowing his sensory issues. Yes, he could cope, but it took ALL of his energy to regulate himself, and there was very little energy left over for learning, especially social learning.

I am, especially in the summer, extremely glad that we sought out treatment for his admittedly mild symptoms. It has increased his own comfort level with his body, his ability to regulate his own anxiety and his general enjoyment of the world around him. It has also helped him be able to focus on social skills, be able to attend public school (which is a good thing because I can't homeschool and we can't afford private) and do things other kids do. He still doesn't want to do a lot of things that many kids do (he doesn't want to do team sports right now, he doesn't want to do music), but he can at least ride a bike!

Is he still quirky? Sure. But he's a heck of a lot more comfortable with his body than my dh is. Ds can wear sandals, dh can't. Ds can do somersaults, dh can't (he says he loses all sense of where his body is in space).

I've heard some people describe SPD (sensory processing disorder, aka sensory integration disorder) as the "new ADHD". Maybe it is. But, I think the reason for the increase in these issues has to do with the fact that the human way of life has outstripped out biology for the moment. 100 years ago, kids would have encountered in their daily lives things that we had to do for ds as therapy -- brushing to stimulate the tactile/proprioceptive senses was probably taken care of by the fact that most kids wore wool clothes (or clothes woven from cedar or..). The 'heavy work' that helps ds calm himself and ground his vestibular senses was part of daily chores on the farm, or hauling wood/coal.

All of this is a long winded way of saying, there is benefit to seeking intervention, even for things that aren't causing major delays. He didn't have a speech delay. He didn't have a large motor delay. He had minor fine motor delays. Our ds will have a better quality of life than his dad did. I can be a better parent (and spouse incidentally because I understand dh a bit better) because I understand better why 'typical' things don't work with ds.

 

If a child isn't talking by 2, then I think it's worth doing intervention, even if the child is highly communicative. At "worst" it will add some tools to the child's box, at best it can prevent larger delays further on.

While it's pretty clear that kids who are communicative AND social, but not talking will mostly likely talk, there are a good 25% of those kids who go on to have problems. And it's hard to predict who. I'm not willing to take that risk.

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Originally Posted by VanessaS The point of the German system is that there is no EI offered to children with speech delays who are otherwise healthy and developing well. They paid for me to take my DS to the pediatric dentist (to have his jaws checked), audiologist (to have his hearing checked), and multiple pediatricians (which cost the health system a not-small amount of money, so it's not like they were cheap with me). I must also add that every referral was followed by an appointment within 2 weeks so I can't concur with the statement.

I have friends in Berlin who also had a son who has a language delay. I remember visiting them when he was 4. He was still not receiving speech therapy, despite the fact that his expressive language skills were 2+ years behind.

His language delay wasn't helped by the fact that his parents didn't interact with him in ways that fostered language development. A lot of commands, very few questions, no recasting of his utterances.

He was (and is) a highly social, engaging child. And in the week that I stayed with him, with my academic "American" style of interaction (albeit in German with a moderate accent), I could see VISIBLE (well, audible) improvement in his language. He went from having very few verbs in his sentences to having verbs in the majority of sentences that he used with ME.

If his parents had been given just a bit of education (yes, intervention) on ways to foster his language, this child would be in a very different place today. As it is, he was shunted off the academic track in school. He was socially isolated because he couldn't communicate well with his peers in elementary school. Now it could be that this child wasn't ever destined for academia, but we'll never know because his language delay has prevented him from being able to learn up to his full potential.

He wasn't in the 25% of kids who didn't talk by age 3. But he surely could have used some help when he was in preschool.

Intervention, when well done, doesn't change who a child is. But it does help them navigate the world more successfully. I'm willing to treat virus and upper respiratory infections at home, because I know most of them go away on their own. But when it gets out of my league, I take my kids to a doctor. Why wouldn't I want to do the same thing for language?

 

A lot of interesting responses. Hmm... I'll just take them one at a time (since they all seem to be directed at me).

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I'm not sure what you think EI does in the US... If you can shrink or prevent that language gap by working with them at age 2 yrs, what's wrong with that?... I'm willing to have my taxes go to 6 months or a year of therapy for a toddler who doesn't speak, especially since if they didn't, a fair number of those kids would need more money to catch up, as much as possible anyway, later.

I've had a lot of difficulty finding out what EI does with highly intelligent late-speakers before the age of 3. Most resources just go on and on about how wonderful it is but never get down to specific activities.
I could imagine that EI could be useful if it was directly mostly at the parents rather than the children. Such as:

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And in the week that I stayed with him, with my academic "American" style of interaction (albeit in German with a moderate accent), I could see VISIBLE (well, audible) improvement in his language.

I have also seen this. In fact, I could imagine that the best therapy for a late-talking, bright child is such interaction, baby-wearing (it's been proven that children who are worn are more likely to be interacted with), breastfeeding, reading him books, playing card or board games (yes, the kids are smart enough for this at 2 yo), building LEGO castles, finger-painting, going for walks, visiting friends and neighbors, cuddling on the couch and talking about the day, etc., etc., etc. These are things that seemed to spark his interest and awaken his language the most. Especially if they were being done by one of his grandmas. He's fascinated by them and he hangs on their every word. Everytime my mother came for a visit (usually staying for 2 weeks), when she went away my DS could easily understand 50-100 words more than when she had arrived. And he'd usually even add some spoken ones.
Perhaps everybody should get a rental, live-in grandma for 2 weeks every few months.

I'd be interested in hearing more about what exactly they do in EI that is such a help for these children. It's hard for me to imagine what they do with an 18-mo that I can't do at home. Although being at home, AP, relatively wealthy, and gifted myself, I admit that I do have certain advantages that other children's parents don't. Perhaps for some of them (whose children are stuck in low-quality day care, or their cribs and baby seats, or some such all day) would profit from this. Although I feel it would be a better use of taxpayer money to fund better-quality day care, maternity-leave, and parenting classes for EVERYONE than EI for those few children.
What I, personally, really could have used would have been a parenting class to help me deal with having a visual/spatial child.

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Kids who have trouble learning to read are more likely than peers to be the kids who once had trouble learning to talk, and it's not just me saying that, it's from years of research which has been done.

Okay... but are we talking about the exact same group of children here? Gifted late-talkers usually begin reading EARLY rather than late, especially if they're taught using the sight method (instead of pure phonics). Remember that most gifted late-talkers are late to speak (so the theory, at least) because their visual-spatial abilities are so large that they crowd out the speech abilities in their brains. Also, they think in pictures so they have the extra developmental step of learning to translate the images and full-concepts in their heads into the sequential manner of language.

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But think of a child who doesn't talk at age 3 - they can't play around with sounds the way other kids do.

I'm not sure what this means. The children aren't necessarily silent until 3. They just have a strongly limited vocabulary. Both of my children are actually very vocal (and loud!) they just don't converse.

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To 'catch up' they have to learn more quickly than everyone else, and if they don't that gap just grows and grows.

Yes, of course, if they don't catch up by 3 yo then the therapy or whatever begins (even in Germany).
But you are forgetting again just how intelligent these children are and how their brains work. Remember, they think in whole concepts, not sequentially. In other words, most children have to say "Mommy" and "ball" and the like for months before they move on to the next step. These children tend to stay non-verbal and then have a true language-explosion all at once. My DS didn't really speak for 23 months and then he woke up one morning with a 200-word vocabulary. Then he spoke single words for about another year and then he woke up with sentences. It's amazing to witness it IRL and it must be seen to be believed. Some of these children are even more extreme, staying completely non-verbal for a long time and then coming out with completely-formed, adult-sounding sentences (Charles Wallace Murry-style).

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Based on that evaluation, our son was diagnosed sensory processing issues (disorder if you like) that led us to seek occupational therapy for him at age 5. All of this is a long winded way of saying, there is benefit to seeking intervention, even for things that aren't causing major delays.

I see your point but the age of 5 is much older than 3. Our focus was on EI (before 3 years of age) in highly-intelligent and communicative children.

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As it is, he was shunted off the academic track in school. He was socially isolated because he couldn't communicate well with his peers in elementary school.

Ah, yes. This is the cancer in the German school system: early separation of the children. It's very sad and unproductive.

 

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Originally Posted by LynnS6 I've heard some people describe SPD (sensory processing disorder, aka sensory integration disorder) as the "new ADHD". Maybe it is. But, I think the reason for the increase in these issues has to do with the fact that the human way of life has outstripped out biology for the moment. 100 years ago, kids would have encountered in their daily lives things that we had to do for ds as therapy -- brushing to stimulate the tactile/proprioceptive senses was probably taken care of by the fact that most kids wore wool clothes (or clothes woven from cedar or..). The 'heavy work' that helps ds calm himself and ground his vestibular senses was part of daily chores on the farm, or hauling wood/coal.

I think this is a very good point. Also, I'm working on a theory that there are far more things now than there used to be that make many more children sensitive about things in the environment. I haven't fully developmed my theory on that yet, but I've seen so many articles and other information that points to correlations.