MERLD does exist!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm confused by this whole thing. Who gives a flying f7ck? What's the point? Therapies will be adjusted to meet your child's need, diagnosis is an art. Seek out good professionals to work with. None of us know the prognosis for any of this stuff. But all of it is neurological. Maybe some are lightly impacted like asbergers and mild ADHD. Some of us got a more severe hit. It's clearly all brain related, and ahat we should be pushing for is actual knowledge re the brain and how it works so that actual treatments can be found. It's like the fever effect - we know the crazy impact of that and why hasn't it been expounded upon and utilized yet? All of this is just a side show. Stop prattling on about it, Merld lady. The plural of anecdotes is not data and you are rude, insulting, condescending and unpleasant.

There are many MERLD parents here. And the best thing that ever happened for my kid was understanding that he had MERLD and not autism. It makes a huge impact on therspies to know what you are dealing with.

It is the autism parents who gang up on us who are rude and condescending. You cannot even start a MERLD success story thread without the ASD parents swooping in.

And, with the autism parents name calling and being derogatory because we do not agree our kids have autism like theirs and all therapies are the same, which they are not.

No one has said that. Not one person. You re very into your strawmen.

[Anonymous]

BTW, speech delays in autism also tend to resolve with time.

https://consumer.healthday.com/cognitive-and-neurological-health-information-26/autism-news-51/most-kids-with-autism-overcome-language-delays-study-finds-674096.html

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The genes article is the lead article in a series of articles that confirms the genetic link. More recent research confirming the link:

http://www.nationwidechildrens.org/news-room-articles/scientist-identify-genetic-link-between-language-impairment-and-autism?contentid=121520

Oh boy. That article is so far from saying that autism and MERLD are the same that I don't even know how to respond. First of all, it makes clear that there is a wide range of language abilities in autism and they are not sure why. Second, even if there is a genetic "link," that says nothing about clinical diagnostic categories and evidence-based therapies that work for each disorder. So for instance it provides no insight whatsoever into one of the questions on this thread - how pragmatic language deficits are the same or different in MERLD and ASD. It also says nothing at all about prognosis and the assertion that some MERLD kids "catch up" while kids with ASD do not.

It wasn't offered for any of those points. It was offered to refute your point that MERLD and ASD are completely unrelated disorders. Clearly, they are not unrelated.

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

[Anonymous]

Anonymous wrote:

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

Not the PP here. Yes but there is considerable evidence that ASD and language disorders are related (though not the same thing), and where symptoms do overlap, then the same treatments are indicated. There seems to be some resistance to or misunderstanding of this issue by some on this thread.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

Not the PP here. Yes but there is considerable evidence that ASD and language disorders are related (though not the same thing), and where symptoms do overlap, then the same treatments are indicated. There seems to be some resistance to or misunderstanding of this issue by some on this thread.

Do you have a MERLD child? Because this has not been our experience at all. In my experience, the behaviors can look the same, but what my MERLD child needs and what the SLPs who are focused on autism language disorders were very different. I had to go in often and instruct the SLPs how to do their job, even the allegedly very talented ones.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

Not the PP here. Yes but there is considerable evidence that ASD and language disorders are related (though not the same thing), and where symptoms do overlap, then the same treatments are indicated. There seems to be some resistance to or misunderstanding of this issue by some on this thread.

Do you have a MERLD child? Because this has not been our experience at all. In my experience, the behaviors can look the same, but what my MERLD child needs and what the SLPs who are focused on autism language disorders were very different. I had to go in often and instruct the SLPs how to do their job, even the allegedly very talented ones.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

Not the PP here. Yes but there is considerable evidence that ASD and language disorders are related (though not the same thing), and where symptoms do overlap, then the same treatments are indicated. There seems to be some resistance to or misunderstanding of this issue by some on this thread.

Do you have a MERLD child? Because this has not been our experience at all. In my experience, the behaviors can look the same, but what my MERLD child needs and what the SLPs who are focused on autism language disorders were very different. I had to go in often and instruct the SLPs how to do their job, even the allegedly very talented ones.

Good lord, I am not sure why you bothered. I mean, after all, your child will age out of MERLD with no lingering deficits, so why bother with speech therapy? Even if you think your child could use some help, why bother with speech therapist since you know more than all of the professionals and researchers put together? You could just do it yourself because you're the one who knows your child best!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The genes article is the lead article in a series of articles that confirms the genetic link. More recent research confirming the link:

http://www.nationwidechildrens.org/news-room-articles/scientist-identify-genetic-link-between-language-impairment-and-autism?contentid=121520

Oh boy. That article is so far from saying that autism and MERLD are the same that I don't even know how to respond. First of all, it makes clear that there is a wide range of language abilities in autism and they are not sure why. Second, even if there is a genetic "link," that says nothing about clinical diagnostic categories and evidence-based therapies that work for each disorder. So for instance it provides no insight whatsoever into one of the questions on this thread - how pragmatic language deficits are the same or different in MERLD and ASD. It also says nothing at all about prognosis and the assertion that some MERLD kids "catch up" while kids with ASD do not.

It wasn't offered for any of those points. It was offered to refute your point that MERLD and ASD are completely unrelated disorders. Clearly, they are not unrelated.

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

The whole way the article is written though suggests that autism is the more severe disorder, i.e. why do some people only have the language issues, while others have the language issues AND autism?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

Not the PP here. Yes but there is considerable evidence that ASD and language disorders are related (though not the same thing), and where symptoms do overlap, then the same treatments are indicated. There seems to be some resistance to or misunderstanding of this issue by some on this thread.

Do you have a MERLD child? Because this has not been our experience at all. In my experience, the behaviors can look the same, but what my MERLD child needs and what the SLPs who are focused on autism language disorders were very different. I had to go in often and instruct the SLPs how to do their job, even the allegedly very talented ones.

Good lord, I am not sure why you bothered. I mean, after all, your child will age out of MERLD with no lingering deficits, so why bother with speech therapy? Even if you think your child could use some help, why bother with speech therapist since you know more than all of the professionals and researchers put together? You could just do it yourself because you're the one who knows your child best!

Not every kid easily grows out of MERLD. Mine has severe MERLD along with other challenges. He certainly needs speech therapy, but the therapy for him is really more about learning to work with new people (he has a lot of anxiety about his language deficits).Speech therapy doesn't "fix" his core deficit at all - lack of receptive speech. Instead, it offers him tools to make the most of what he has. It may be that time will not totally close the receptive gap for him. But that's unusual in my dealings with MERLD parents from all over the globe.

I know many other parents who did not do speech therapy or even preschools with their MERLD kids -- they used therapy like the Hannen Method, which is very child led. By the time kindergarten rolled around, many entered without even an IEP. One of my best friends did this with her child, and while it was a rough few years without extra support, now in middle school he's doing great. When we have them over, though, we typically don't even say how we met. She keeps his early language delay a total secret from everyone.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

Not the PP here. Yes but there is considerable evidence that ASD and language disorders are related (though not the same thing), and where symptoms do overlap, then the same treatments are indicated. There seems to be some resistance to or misunderstanding of this issue by some on this thread.

Do you have a MERLD child? Because this has not been our experience at all. In my experience, the behaviors can look the same, but what my MERLD child needs and what the SLPs who are focused on autism language disorders were very different. I had to go in often and instruct the SLPs how to do their job, even the allegedly very talented ones.

Good lord, I am not sure why you bothered. I mean, after all, your child will age out of MERLD with no lingering deficits, so why bother with speech therapy? Even if you think your child could use some help, why bother with speech therapist since you know more than all of the professionals and researchers put together? You could just do it yourself because you're the one who knows your child best!

You are kind of proving the point - that MERLD kids are getting shunted to ASD treatments that may not be appropriate for their conditions because so many providers are specialized in ASD.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The genes article is the lead article in a series of articles that confirms the genetic link. More recent research confirming the link:

http://www.nationwidechildrens.org/news-room-articles/scientist-identify-genetic-link-between-language-impairment-and-autism?contentid=121520

Oh boy. That article is so far from saying that autism and MERLD are the same that I don't even know how to respond. First of all, it makes clear that there is a wide range of language abilities in autism and they are not sure why. Second, even if there is a genetic "link," that says nothing about clinical diagnostic categories and evidence-based therapies that work for each disorder. So for instance it provides no insight whatsoever into one of the questions on this thread - how pragmatic language deficits are the same or different in MERLD and ASD. It also says nothing at all about prognosis and the assertion that some MERLD kids "catch up" while kids with ASD do not.

It wasn't offered for any of those points. It was offered to refute your point that MERLD and ASD are completely unrelated disorders. Clearly, they are not unrelated.

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

The whole way the article is written though suggests that autism is the more severe disorder, i.e. why do some people only have the language issues, while others have the language issues AND autism?

It's very hard to draw any conclusions from that press release about the study - PARTICULARLY about anything clinical, such as prognosis and the best treatments. Which are, after all, the most important consideration for parents in the moment. Again, it's not like they can offer some kind of gene therapy if the genetic link is established. That's just not where our state of knowledge is at.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

Not the PP here. Yes but there is considerable evidence that ASD and language disorders are related (though not the same thing), and where symptoms do overlap, then the same treatments are indicated. There seems to be some resistance to or misunderstanding of this issue by some on this thread.

There is no true evidence. There may be studies but studies are just looking at a population and comparing those people. There is no blood test, no genetic test, no MRI/Xray/Cat scan that can show any proof of what it is and if they are related. Medicine is not that advanced.

Both sets of kids can get speech therapy, but if an ASD child has pragmatic issues, it will look very different from a child who has receptive and expressive issues. ABA is for ASD, not MERLD or language disorders. You cannot get ABA for MERLD. OT may be similar but would be different if a child had significant receptive delays which impact overall functioning.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

Not the PP here. Yes but there is considerable evidence that ASD and language disorders are related (though not the same thing), and where symptoms do overlap, then the same treatments are indicated. There seems to be some resistance to or misunderstanding of this issue by some on this thread.

Do you have a MERLD child? Because this has not been our experience at all. In my experience, the behaviors can look the same, but what my MERLD child needs and what the SLPs who are focused on autism language disorders were very different. I had to go in often and instruct the SLPs how to do their job, even the allegedly very talented ones.

Good lord, I am not sure why you bothered. I mean, after all, your child will age out of MERLD with no lingering deficits, so why bother with speech therapy? Even if you think your child could use some help, why bother with speech therapist since you know more than all of the professionals and researchers put together? You could just do it yourself because you're the one who knows your child best!

Not every kid easily grows out of MERLD. Mine has severe MERLD along with other challenges. He certainly needs speech therapy, but the therapy for him is really more about learning to work with new people (he has a lot of anxiety about his language deficits).Speech therapy doesn't "fix" his core deficit at all - lack of receptive speech. Instead, it offers him tools to make the most of what he has. It may be that time will not totally close the receptive gap for him. But that's unusual in my dealings with MERLD parents from all over the globe.

I know many other parents who did not do speech therapy or even preschools with their MERLD kids -- they used therapy like the Hannen Method, which is very child led. By the time kindergarten rolled around, many entered without even an IEP. One of my best friends did this with her child, and while it was a rough few years without extra support, now in middle school he's doing great. When we have them over, though, we typically don't even say how we met. She keeps his early language delay a total secret from everyone.

+1, MERLD looks different for every child. Speech therapy gives them the tools, it is not seen as a cure. It supports the child so when they are ready, they can use those tools to continue to progress. Either the receptive language comes or it doesn't. Its not something that can be fixed or cured.

I know a lot of families who avoid preschool as often the school does not understand MERLD and assumes the child is being difficult when they are not cooperating, following directions or sitting when in reality, the receptive language presents a huge challenge and they, in reality do not understand what is being told. Often those who do not do speech therapy are those without the resources - either financial and/or insurance or they believe they know best (and some may). I have told some MERLD families to pull the child from the particular school as its clearly doing more harm than good. People "understand" ASD as it is more common. People do not understand receptive issues and just assume the worst about the child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

Not the PP here. Yes but there is considerable evidence that ASD and language disorders are related (though not the same thing), and where symptoms do overlap, then the same treatments are indicated. There seems to be some resistance to or misunderstanding of this issue by some on this thread.

Do you have a MERLD child? Because this has not been our experience at all. In my experience, the behaviors can look the same, but what my MERLD child needs and what the SLPs who are focused on autism language disorders were very different. I had to go in often and instruct the SLPs how to do their job, even the allegedly very talented ones.

Good lord, I am not sure why you bothered. I mean, after all, your child will age out of MERLD with no lingering deficits, so why bother with speech therapy? Even if you think your child could use some help, why bother with speech therapist since you know more than all of the professionals and researchers put together? You could just do it yourself because you're the one who knows your child best!

Do you have a MERLD child? You do speech therapy to give your child the tools they need so as they advanced, they do it successfully. And, we have a great SLP.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

"I" never said they were unrelated. There is more than one person on this thread. And anyway, those gene studies are so speculative that they are very far from being useful for the issues we all face. Psychiatric diagnoses are based on clusters of symptoms, not on underlying causes, which are still far from being understood. In some cases the symptoms might cross-cut diagnoses, of course. But we are far from being able to throw out the diagnostic categories in use. And even if we were we are so far from anything like gene therapy (assuming that the conditions share a genetic cause) that treatment would still be based on the symptoms for a long, long time.

Not the PP here. Yes but there is considerable evidence that ASD and language disorders are related (though not the same thing), and where symptoms do overlap, then the same treatments are indicated. There seems to be some resistance to or misunderstanding of this issue by some on this thread.

Do you have a MERLD child? Because this has not been our experience at all. In my experience, the behaviors can look the same, but what my MERLD child needs and what the SLPs who are focused on autism language disorders were very different. I had to go in often and instruct the SLPs how to do their job, even the allegedly very talented ones.

Good lord, I am not sure why you bothered. I mean, after all, your child will age out of MERLD with no lingering deficits, so why bother with speech therapy? Even if you think your child could use some help, why bother with speech therapist since you know more than all of the professionals and researchers put together? You could just do it yourself because you're the one who knows your child best!

Not every kid easily grows out of MERLD. Mine has severe MERLD along with other challenges. He certainly needs speech therapy, but the therapy for him is really more about learning to work with new people (he has a lot of anxiety about his language deficits).Speech therapy doesn't "fix" his core deficit at all - lack of receptive speech. Instead, it offers him tools to make the most of what he has. It may be that time will not totally close the receptive gap for him. But that's unusual in my dealings with MERLD parents from all over the globe.

I know many other parents who did not do speech therapy or even preschools with their MERLD kids -- they used therapy like the Hannen Method, which is very child led. By the time kindergarten rolled around, many entered without even an IEP. One of my best friends did this with her child, and while it was a rough few years without extra support, now in middle school he's doing great. When we have them over, though, we typically don't even say how we met. She keeps his early language delay a total secret from everyone.

+1, MERLD looks different for every child. Speech therapy gives them the tools, it is not seen as a cure. It supports the child so when they are ready, they can use those tools to continue to progress. Either the receptive language comes or it doesn't. Its not something that can be fixed or cured.

I know a lot of families who avoid preschool as often the school does not understand MERLD and assumes the child is being difficult when they are not cooperating, following directions or sitting when in reality, the receptive language presents a huge challenge and they, in reality do not understand what is being told. Often those who do not do speech therapy are those without the resources - either financial and/or insurance or they believe they know best (and some may). I have told some MERLD families to pull the child from the particular school as its clearly doing more harm than good. People "understand" ASD as it is more common. People do not understand receptive issues and just assume the worst about the child.

Great post! And SO TRUE!