Loaded question: MERLD and autism

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I should probably read this whole thread before weighing in, but I've been reading the whole MERLD vs ASD debate on DCUM for years. MERLD was the first dx my child got. Since then, my child has received a few other medical diagnosese, and has shown irregular eegs. Child still does not have an ASD dx.

In any case, my child's MERLD is not fixed, and he is much more overall impaired than many of his peers with ASD.

Have you done an MRI? You should with delays and an irregular EEG, so I am assuming yes?

Most docs will not do an MRI for young kids because they have to be sedated. We asked several times. (not that poster) We did an EEG too.

If the eeg was abnormal and there are delays the standard of care is absolutely to do an MRI. We did one and it was normal but I would want one in that situation. We were at children's but georgetown said they also would have done an MRI.

[Anonymous]

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Anonymous wrote:

Anonymous wrote:

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Anonymous wrote:

and OP, here's a more recent interview with Dr. Camrata on language, where he even talks about his own son, who was misdiagnosed:

https://mitpress.mit.edu/blog/five-minutes-stephen-camarata



Many clinicians conduct what I call a “confirmatory” diagnosis. They start out looking for “signs” or “symptoms” of autism and simply confirm a preordained label without completing a differential diagnosis. That is, they start off with the idea that the late talking is a symptom of autism and confirm that hypothesis if any other signs or symptoms of autism are observed. But this happens even if these “red flag” behaviors are actually relatively common in typically developing children. For example, many two-year-olds throw tantrums, ignore their parents, are shy of strangers, are picky eaters, have large heads and/or toe walk. No one would pay attention to these “signs” or “red flags” unless a child is also late talking. These traits are then used to justify the autism diagnosis. Evidently, some clinics and some clinicians label all, or nearly all late-talking children as being on the autism spectrum even though we know from population studies that only a small fraction of late-talking children actually have autism.

In order to guard against inaccurate labels, parents should ask the clinician how they arrived on a particular label. More importantly, they should also ask whether this label would be applied if the child were not late talking. Intellectual disability and ASD are both conditions that have severe symptoms above and beyond talking late so that no child should be diagnosed with either of these conditions solely on the basis of their verbal abilities.

I also wish to provide an important caveat. Some late-talking children do indeed have autism or intellectual disability and I have encountered parents who disagree with this label even when my testing shows that a child’s late talking is actually a symptom of one (or both) of these lifelong difficult conditions. These parents are understandably upset and may attempt to argue with the diagnosis. A clinician should always welcome questions and be prepared to explain how and why a label was generated. Even when parents disagree with my diagnosis, I would never berate them or accuse them of being in denial. After all, if the label is accurate, than the symptoms of autism and/or intellectual disability will persist far after the child has learned to talk and the parents will ultimately realize that the original diagnosis was correct. Also, neither I nor any other clinician is infallible so it is possible that the initial label will subsequently be proven incorrect.

Moreover, parents should trust their common sense and instincts and it is a clinician’s job to make sure that they thoroughly explain a label, what it means and how they arrived at the diagnosis.

As you explain in the book, even though early diagnosis of late-talking children and early intervention are very important, there can be pitfalls of early diagnoses. Can you elaborate on what these pitfalls could be?

The primary pitfall is evident when the early intervention is based upon an inaccurate diagnosis. In medicine, this simple truth is well understood. It makes no sense to deliver a treatment unless an accurate diagnosis has been made. For example, being thirsty is a symptom of diabetes. But no doctor would treat thirst with insulin (which is often used to treat diabetes) unless a differential and positive diagnosis for diabetes was made. Of course, the thirst could also mean that a person was dehydrated or could arise from any number of conditions other than diabetes. And the thirst may not be a symptom of diabetes or any other medical condition. The treatment must be appropriate for the diagnosis!

....

The overwhelming majority of children with autism or autism spectrum disorder are late talking. But, the overwhelming majority of children who talk late do not have autism. Simple epidemiology tells us this must be so. The incidence of late talking is about one in nine or 10 children in the general population whereas even the most generous estimate of autism indicates that only about one in 50 or 60 children have even one symptom of ASD. It is anyone’s guess whether this one in 50 or 60 includes late talking children who actually have been a misidentified as having an ASD. Regardless, taking these figures at face value indicates that less than 1 in 5 late talking children has autism or ASD.

An accurate diagnosis of autism includes not only late talking but also a reduced or absent motivation for social communication. Most talking children are socially motivated and do not display with this key feature of autism. However, because the child is not talking, a clinician must be attentive to nonverbal social engagement when completing a differential diagnosis. There are quite a number of excellent clinician-scientists studying the causes of autism, but currently a specific cause is not known. We do know that genetics play a role, and that the neurological development of people with autism is different in some ways than in other children. Moreover, it is very important that parents and clinicians understand that late talking does not necessarily mean the child has autism or autism spectrum disorders. It is also important that when a late talking child does indeed have autism, that the family get the proper help and begin treatment as soon as possible.

This is helpful, but I'm not sure that Dr. Camarata's description of ASD diagnostics really reflects the clinicians in this area (DC). I doubt that anyone at Childrens, KKI, etc, are focusing solely on language development to diagnose autism, but rather on the instruments developed (like ADOS) and a multidisciplinary approach that includes language. And for me personally, if my child were a borderline case, I'd fine the statistic "1 in 5 late talking children has ASD" to actually be a very strong motivator to seek out early intervention for ASD even in the absence of an iron clad diagnosis.

He is reflective of the language disorder community. He is not focused on ASD except to rule in/out. You are picking up on the wrong aspects and only those that meet your agenda. He does do significant testing looking at all aspects on kids and strongly recommends early intervention. One thing he does do is look at autism. There is more to autism than a simple ADOS and you also need to look at a child in a more holistic approach. Dr. Camarata not only does hours of testing, but takes the time to build a relationship with a child down to playing with them on the floor if necessary to see their social interactions as well as lengthy interviews with parents and looks at medical records. You keep talking as if you've been to him and had your child evaluated and you clearly haven't so instead you misinterpret things.

?? I have no agenda. I do tend to question things when there is only one single doctor in the entire country with supposedly the right answer. My point, that you have not disputed, is that I think diagnostics in the DC area are pretty sophisticated, so I wanted to engage more about how say KKI or Childrens misdiagnoses ASD.

He is the leading expert on language disorders. You don't go to through an ASD evaluation for a language disorder. You go to someone who specializes in your child's concerns. We went to Children's speech clinic and they were terrible. They told me my child was fine when I knew better. Luckily his doctor agreed and gave me a referral for a second opinion. A trip out to Dr. Camarata is not very expensive. Its far less than any private pay evaluation here. The trip costs were minimal and a fun trip. And, there are more experts than just Children's or KKI.

That's begging the question. The topic here is why OP's child is being flagged for ASD; and Camarata's excerpt itself suggests there is a very high co-occurance of language delay and ASD. So screening and evaluating a child with a mixed expressive-receptive language delay for ASD seems prudent, and Camarata makes some pretty specific criticisms about how that is done. My question is whether people have specific experience in the DC area ASD clinics of being misdiagnosed solely on the basis of language.

OP said the child was screened and ruled out. Teachers are not trained in diagnosis nor do psychologists, especially school ones have the expertise to tease out the different disorders. So, you are solely using ASD to derail the conversation and discredit MERLD or receptive/expressive language issues.

Yes, of course, people have gotten misdiagnosis at the specific ASD as well as developmental ped's. But, that is not why you go see someone like Dr. Camarata. Same thing if our kids did have ASD or another medical condition. I would take my child anywhere in the world if it meant proper diagnosis and treatment. If your child had a specific illness, would you take them to a generalist or someone who specializes in it? You'd travel and get your child the best treatment possible.

NP here. PP, you need to just stop. You have been repeating the same crap for pages, accusing everyone who disagrees with you of "derailing" the conversation when it is you, you PP who needs to separate your experience with your child from what OP might be going through. Of course psychologists are trained to "tease out" different disorders. Do you not understand that having an ADOS does not mean that autism is automatically diagnosed? The ADOS was designed to differentiate autism from other disorders, especially language delay. If OPs child has not had one, he/she should get one.

Please stop making everything about you. You surpassed "providing a helpful perspective" like 7 pages of text ago. Now you've settled into the "no one can help but Steve Camarata" routine and it is just such overkill. Just stop. Do a spin off thread if you must but please stop taking over other people's questions. It makes it very hard for them to get the help they need, which may include choices you don't agree with.

[Anonymous]

I'm a different poster than above, but I wouldn't put much stock in a psychologist, especially a school psychologist. Many really aren't trained very well. You really have to do your homework to find one who does a differential diagnosis.

And the ADOS has issues if you drill down. It has sensitivity, but lacks specificity.

Some posters seem to be trying to say that Dr. Camarata is some sort of "fringe" practitioner, which simply isn't true. He is one of the premier language researchers in the U.S. He is a scientist and extremely exacting. During our early testing years ago, we had a CARS done at a Children's Hospital as part of an initial battery of tests. Several months later, the Camaratas repeated the CARS test, without knowing the result of the first one. The scores were within a half-point of each other - no autism. But still, because of our child's extreme language difficulties, teachers and school psychologists relentlessly pushed for a autism educational label.

It's just what happens to many language impaired and language delayed children. Because just like posters on this board, they THINK they are qualified to diagnose.

[Anonymous]

PP, Camarata published the "Late-Talking Children" book in 2014 (as was the interview) and republished it in 2015. It's not that recent and nothing new, it's just based on all his prior research b/f DSM V changes in 2013.

It's also bizarre your obsession on treating language disorder when Camarata talks about clinicians conducting a “confirmatory” diagnosis. As a parent if you're just looking to SLPs to confirm a language disorder--guess what, that's what you'll find. SLPs are not qualified to diagnose autism without specialized training: http://blog.asha.org/2014/04/10/can-speech-language-pathologists-diagnose-autism/

We all know that most children with autism are late talkers and most late talkers don't have autism. We also know that the numbers of children with the autism "label" is artificially inflated by IEP designations.

The OP's child is just 3, stop trying to "help" her by ramming your obvious skew that it's not autism. Come back and rant all you want about language disorders when your child has actually a had a neuropscyh evaluation. At 3, her developmental pediatrician was being conservative and not over zealous with a diagnosis. What her child's diagnosis will be in a few years will be anyone's guess.

However, it doesn't matter if it's a language disorder or autism (btw, kids with autism can have language disorders too), her kid sounds in need of practical help.

[Anonymous]

I actually thought the thread was going quite civilly given the topic and previous history. OP knew this was a "loaded" question when she asked it. But the last page or two has degenerated. I am not sure if the two PPs who seem to be having it out between MERLD and autism know that while quoting the other's posts, their responses do not seem to respond to points made in the quoted posts. For me at least, it makes it very hard to follow.

I don't particularly have an axe to grind here, but I am the NP who posted about getting a bad,though expensive, wrong steer from Stixrud and got a lot better help from a psychiatrist and a good SLP. I really don't see how ABA would have been better than language therapy from a cost in terms of time and dollars to benefit basis.

Without knowing much about it, ABA seems a bit over sold. One of the quotes given from some ABA association even said ABA could be used for OCD--this just seems wrong to me as exposure and response prevention therapy is best practice for OCD.

[Anonymous]

Anonymous wrote:I actually thought the thread was going quite civilly given the topic and previous history. OP knew this was a "loaded" question when she asked it. But the last page or two has degenerated. I am not sure if the two PPs who seem to be having it out between MERLD and autism know that while quoting the other's posts, their responses do not seem to respond to points made in the quoted posts. For me at least, it makes it very hard to follow.

I don't particularly have an axe to grind here, but I am the NP who posted about getting a bad,though expensive, wrong steer from Stixrud and got a lot better help from a psychiatrist and a good SLP. I really don't see how ABA would have been better than language therapy from a cost in terms of time and dollars to benefit basis.

Without knowing much about it, ABA seems a bit over sold. One of the quotes given from some ABA association even said ABA could be used for OCD--this just seems wrong to me as exposure and response prevention therapy is best practice for OCD.

Welcome, well said and hope you will stay!

[Anonymous]

Anonymous wrote:PP, Camarata published the "Late-Talking Children" book in 2014 (as was the interview) and republished it in 2015. It's not that recent and nothing new, it's just based on all his prior research b/f DSM V changes in 2013.

It's also bizarre your obsession on treating language disorder when Camarata talks about clinicians conducting a “confirmatory” diagnosis. As a parent if you're just looking to SLPs to confirm a language disorder--guess what, that's what you'll find. SLPs are not qualified to diagnose autism without specialized training: http://blog.asha.org/2014/04/10/can-speech-language-pathologists-diagnose-autism/

We all know that most children with autism are late talkers and most late talkers don't have autism. We also know that the numbers of children with the autism "label" is artificially inflated by IEP designations.

The OP's child is just 3, stop trying to "help" her by ramming your obvious skew that it's not autism. Come back and rant all you want about language disorders when your child has actually a had a neuropscyh evaluation. At 3, her developmental pediatrician was being conservative and not over zealous with a diagnosis. What her child's diagnosis will be in a few years will be anyone's guess.

However, it doesn't matter if it's a language disorder or autism (btw, kids with autism can have language disorders too), her kid sounds in need of practical help.

If you'll pay for it, I'd be happy to get my kid a neuropsych if you think it would be helpful. Thanks for offering. Our insurance and developmental ped will not authorize it given how my child is doing. Why are you so insistent that all kids with language disorders have autism? OP is saying her developmental ped ruled it out. That is a specialist authorized to rule it out or in.

Dr. Camarata is trained to diagnose autism. His wife, Mary Camarata has training too but usually defers to her husband if you call to see her and there is any question. You don't know much about them or what they do, yet you feel the need to slam them. They are far from perfect, but its all many of us have as a resource right now.

[Anonymous]

That's begging the question. The topic here is why OP's child is being flagged for ASD; and Camarata's excerpt itself suggests there is a very high co-occurance of language delay and ASD. So screening and evaluating a child with a mixed expressive-receptive language delay for ASD seems prudent, and Camarata makes some pretty specific criticisms about how that is done. My question is whether people have specific experience in the DC area ASD clinics of being misdiagnosed solely on the basis of language.

OP said the child was screened and ruled out. Teachers are not trained in diagnosis nor do psychologists, especially school ones have the expertise to tease out the different disorders. So, you are solely using ASD to derail the conversation and discredit MERLD or receptive/expressive language issues.

Yes, of course, people have gotten misdiagnosis at the specific ASD as well as developmental ped's. But, that is not why you go see someone like Dr. Camarata. Same thing if our kids did have ASD or another medical condition. I would take my child anywhere in the world if it meant proper diagnosis and treatment. If your child had a specific illness, would you take them to a generalist or someone who specializes in it? You'd travel and get your child the best treatment possible.

NP here. PP, you need to just stop. You have been repeating the same crap for pages, accusing everyone who disagrees with you of "derailing" the conversation when it is you, you PP who needs to separate your experience with your child from what OP might be going through. Of course psychologists are trained to "tease out" different disorders. Do you not understand that having an ADOS does not mean that autism is automatically diagnosed? The ADOS was designed to differentiate autism from other disorders, especially language delay. If OPs child has not had one, he/she should get one.

Please stop making everything about you. You surpassed "providing a helpful perspective" like 7 pages of text ago. Now you've settled into the "no one can help but Steve Camarata" routine and it is just such overkill. Just stop. Do a spin off thread if you must but please stop taking over other people's questions. It makes it very hard for them to get the help they need, which may include choices you don't agree with.

How much direct training do you think psychologists have with language disorders? What a few week section in one class at school? Its very different than an SLP's training.

[Anonymous]

Anonymous wrote:

Anonymous wrote:PP, Camarata published the "Late-Talking Children" book in 2014 (as was the interview) and republished it in 2015. It's not that recent and nothing new, it's just based on all his prior research b/f DSM V changes in 2013.

It's also bizarre your obsession on treating language disorder when Camarata talks about clinicians conducting a “confirmatory” diagnosis. As a parent if you're just looking to SLPs to confirm a language disorder--guess what, that's what you'll find. SLPs are not qualified to diagnose autism without specialized training: http://blog.asha.org/2014/04/10/can-speech-language-pathologists-diagnose-autism/

We all know that most children with autism are late talkers and most late talkers don't have autism. We also know that the numbers of children with the autism "label" is artificially inflated by IEP designations.

The OP's child is just 3, stop trying to "help" her by ramming your obvious skew that it's not autism. Come back and rant all you want about language disorders when your child has actually a had a neuropscyh evaluation. At 3, her developmental pediatrician was being conservative and not over zealous with a diagnosis. What her child's diagnosis will be in a few years will be anyone's guess.

However, it doesn't matter if it's a language disorder or autism (btw, kids with autism can have language disorders too), her kid sounds in need of practical help.

If you'll pay for it, I'd be happy to get my kid a neuropsych if you think it would be helpful. Thanks for offering. Our insurance and developmental ped will not authorize it given how my child is doing. Why are you so insistent that all kids with language disorders have autism? OP is saying her developmental ped ruled it out. That is a specialist authorized to rule it out or in.

I don't insist PP. The fact that your child has a DSM diagnosis 4 year out of date would reason enough for your developmental pediatrician or insurance to green light additional testing. Parents like you avoid getting a full educational evaluation b/c they fear autism lurks out in the waters like Jaws ready to strike.

Plus aren't you the poster who bullied her ST to keep seeing your kid although her job had changed? Then you were so happy with the "MERLD" finding that you wore down the developmental pediatrician to change the ICD autism code to the ICD code for MERLD. So you could officially say your son had MERLD and no longer autism (and least according to diagnostic codes used for billing.)

Dr. Camarata is trained to diagnose autism. His wife, Mary Camarata has training too but usually defers to her husband if you call to see her and there is any question. You don't know much about them or what they do, yet you feel the need to slam them. They are far from perfect, but its all many of us have as a resource right now.

***whoa is you. Goldilox can't find the porridge that's just right.

I know the Camarats diagnosis autism. I have hight respect for them. As Camarata himself says that without biomarkers to identify autism, we must rely on behavioral proxies. "Indeed, reading Volkmar and Reichow (2014) was a poignant reminder that, prior to the development of the ADOS and other instruments such as the Screening Test for Autism at Three (STAT, Stone et al., 2004), an ASD diagnosis was founded solely on clinical judgement. Of course, clinical judgement remains the gold standard for diagnosing ASD, but the advent of instruments such as the ADOS and the STAT have provided a standard context for gathering information on young children including tod- dlers and pre-schoolers upon which to form a clinical judgement."

https://medschool.vanderbilt.edu/developmental-disabilities-lab/files/developmental-disabilities-lab/public_files/Publications/Validity%20of%20early%20identi?%20cation%20and%20early%20intervention%20in%20autism%20%20spectrum%20disorders-%20Future%20directions%20%20%20STEPHEN%20CAMARATA.pdf

[Anonymous]

As a PP said, you guys aren't really responding to each other. Maybe it's time to give it a rest? You are never going to convince each other of whatever it is you are trying say and the rest of us don't care at all.

[Anonymous]

Anonymous wrote:PP, Camarata published the "Late-Talking Children" book in 2014 (as was the interview) and republished it in 2015. It's not that recent and nothing new, it's just based on all his prior research b/f DSM V changes in 2013.

It's also bizarre your obsession on treating language disorder when Camarata talks about clinicians conducting a “confirmatory” diagnosis. As a parent if you're just looking to SLPs to confirm a language disorder--guess what, that's what you'll find. SLPs are not qualified to diagnose autism without specialized training: http://blog.asha.org/2014/04/10/can-speech-language-pathologists-diagnose-autism/

We all know that most children with autism are late talkers and most late talkers don't have autism. We also know that the numbers of children with the autism "label" is artificially inflated by IEP designations.

The OP's child is just 3, stop trying to "help" her by ramming your obvious skew that it's not autism. Come back and rant all you want about language disorders when your child has actually a had a neuropscyh evaluation. At 3, her developmental pediatrician was being conservative and not over zealous with a diagnosis. What her child's diagnosis will be in a few years will be anyone's guess.

However, it doesn't matter if it's a language disorder or autism (btw, kids with autism can have language disorders too), her kid sounds in need of practical help.

OP's child is not 3. She said the 3 year testing is coming up to rule on special education eligibility, so more around 5 or 6. Meaning the Developmental Pediatrician's diagnosis will most likely stand as the child would have been past the age where ASD is readily indentified.

OP, what we did in this case was allow for everything but the ASD evaluation. So language and academic testing was done, and our language impaired child qualified under the speech and language category -- which meant he was able to get speech, OT, and resource room.

[Anonymous]

I'm poster above who posted that I have child diagnosed with MERLD as well as many medical issues. To answer the above question, yes, my child has done a couple of MRIs, as well as five EEGs

Buried in the long debate about MERLD vs ASD, someone mentioned medicating for an irregular EEG even if no seizures. To the poster who suggested that, did it help with language and cognition? We are currently not medicating for seizures but are considering a trileptal trial...

[Anonymous]

Anonymous wrote:I'm poster above who posted that I have child diagnosed with MERLD as well as many medical issues. To answer the above question, yes, my child has done a couple of MRIs, as well as five EEGs

Buried in the long debate about MERLD vs ASD, someone mentioned medicating for an irregular EEG even if no seizures. To the poster who suggested that, did it help with language and cognition? We are currently not medicating for seizures but are considering a trileptal trial...

Yes, that's me. my son has benign epilepsy BUT he has delays so we are medicating and it has helped. Apparently it does in like 10%of cases. It's hard for me to separate them out but when he turned 4 we started medicating and he got a normal language test for he first time and since has had cognitive gains. We're your son's MRI results normal? ours were which I guess rules out some stuff so means that medicating is I think more at the discretion of the neuro. What kind of activity was on the eeg?

[Anonymous]

Anonymous wrote:

Anonymous wrote:I'm poster above who posted that I have child diagnosed with MERLD as well as many medical issues. To answer the above question, yes, my child has done a couple of MRIs, as well as five EEGs

Buried in the long debate about MERLD vs ASD, someone mentioned medicating for an irregular EEG even if no seizures. To the poster who suggested that, did it help with language and cognition? We are currently not medicating for seizures but are considering a trileptal trial...

Yes, that's me. my son has benign epilepsy BUT he has delays so we are medicating and it has helped. Apparently it does in like 10%of cases. It's hard for me to separate them out but when he turned 4 we started medicating and he got a normal language test for he first time and since has had cognitive gains. We're your son's MRI results normal? ours were which I guess rules out some stuff so means that medicating is I think more at the discretion of the neuro. What kind of activity was on the eeg?

In cases of ESES, the medication is different from the typical anti-seizure regimens because it is intended to supress the epileptiform discharges, not just seizures: steroids and benzos. https://www.ncbi.nlm.nih.gov/pubmed/18555191

Not sure if this is the same or different from the idea of medicating for BECTS.

[Anonymous]

Anonymous wrote:

Anonymous wrote:PP, Camarata published the "Late-Talking Children" book in 2014 (as was the interview) and republished it in 2015. It's not that recent and nothing new, it's just based on all his prior research b/f DSM V changes in 2013.

It's also bizarre your obsession on treating language disorder when Camarata talks about clinicians conducting a “confirmatory” diagnosis. As a parent if you're just looking to SLPs to confirm a language disorder--guess what, that's what you'll find. SLPs are not qualified to diagnose autism without specialized training: http://blog.asha.org/2014/04/10/can-speech-language-pathologists-diagnose-autism/

We all know that most children with autism are late talkers and most late talkers don't have autism. We also know that the numbers of children with the autism "label" is artificially inflated by IEP designations.

The OP's child is just 3, stop trying to "help" her by ramming your obvious skew that it's not autism. Come back and rant all you want about language disorders when your child has actually a had a neuropscyh evaluation. At 3, her developmental pediatrician was being conservative and not over zealous with a diagnosis. What her child's diagnosis will be in a few years will be anyone's guess.

However, it doesn't matter if it's a language disorder or autism (btw, kids with autism can have language disorders too), her kid sounds in need of practical help.

OP's child is not 3. She said the 3 year testing is coming up to rule on special education eligibility, so more around 5 or 6. Meaning the Developmental Pediatrician's diagnosis will most likely stand as the child would have been past the age where ASD is readily indentified.

OP, what we did in this case was allow for everything but the ASD evaluation. So language and academic testing was done, and our language impaired child qualified under the speech and language category -- which meant he was able to get speech, OT, and resource room.

Why would you refuse the ASD evaluation? I can understand refusing a school district ASD evaluation (or any evaluation) if you doubt their competence or think that they're trying to shirk language supports with the ASD label. But why wouldn't you have your own dev ped do one if there was any cause for concern?