Educate me: what is the difference between MERLD and HFA?

[Anonymous]

I think the Eides have one of the best blogs I've seen talking about this, complete with brain scans about how the two disorders, MERLD and ASD, are different. (They also have a big chapter of language disorders, what they are often misdiagnosed as, and how to work with language disorders in their book "The Mislabled Child. It also details Autism and many other childhood developmental disorders, and how to effectively tell them apart.)

http://eideneurolearningblog.blogspot.com/2009/02/late-talking-children-confused-with.html


Late-talking children confused with Autism Spectrum
Although one in five children have a language delay, it is surprising how often children are misdiagnosed as having an autism spectrum disorder or low IQ.

...
This study (figure above) provides insight into some of the whys of speech delay. When late-talking children listened to their mother's voices "recalling relatives, pets, and events; and singing familiar songs", they listened with their right language areas rather than their left (controls). We've blogged on some the characteristics of right-hemispheric language (Searching for the Right Word in the Right Brain); gifted dyslexic storytellers (here) also tend to have a right hemispheric pattern of expression - cinematic (immersive, multisensory, rich in associations), but often non-linear. The fMRI appearance of autistic subjects, on the other hand, is very different from this. Language problems associated with autism showed reduced connectivity with sentence comprehension tasks, but the activity is still on the left hemisphere, not the right. For more on this, look here.

....
Late-talking children often can be distinguished from autism because of their normal affiliative or social drive and social mirroring ability. Their language strengths and weaknesses are also quite different been non-autistic late talking children and autistic late-talking children. Most mistakes are made when children are diagnosed with behavioral checkslists rather than a detailed professional assessments.

[Anonymous]

NP here. As another person who was not running away from ASD diagnosis but whose child ultimately was diagnosed with something else (also not MERLD), I just want to add that my main concern in searching for the right diagnosis is getting the right support and treatment for my child. Many times they overlap, but sometimes they do not. ABA therapy would definitely not have been the right treatment for us.

[Anonymous]

I realize ASDs are diverse and children with an ASD suffer sometimes from a misconceptions about what ASD is. So i dont want to offend anybody with my post below...

That said: my child has been dxed with MERLD. Ive inquired if he'd be helped with and ASD dx as well. Ive been told that some of the treat for ASD is not appropriate for him -- ABA, for instance. I was told children with autism need help with playing, specifically imaginative play, since that is an important pre-reading skill. My child has the opposite problem -- way overactive imagination, which some have theorized he's developed to overcome his language deficits

[Anonymous]

My child is on the spectrum and ABA was not the right treatment for him either. Every child is unique.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I agree that it doesnt matter the label as long as you are getting the right treatment -- but isnt it possible to have a language disorder without having an ASD? MERLD stands for mixed expressive receptive language disorder -- isnt it possible ot have a real disorder in say, expressive language and that's it? Why the scoffing and sniffing and dismissing of this dx?

Of course its possible but every single child I read about googling the disorder has red flags for ASDs. Is MERLD in the DSM?

MERLD is in the DSM. One of the criterion for a MERLD diagnosis is that ASD was ruled out. If a parent tells that their child has MERLD, that means the person doing the diagnosis looked at ASD and ruled it out.

It is absolutely possible to just have an expressive language disorder or a receptive language disorder or a mixed expressive receptive language disorder. About 5% of kindergartners have one of them.

I cannot imagine that newer version of the DSM say to rule out ASD first when most kids with ASD have both receptive and expressive impairment to some degree, but the DSM has many things I don't agree with so perhaps this is still in there.

I have noticed whenever this topic comes up people get very upset. It reminds me of all the discussion about ASD and OCD and ADHD, etc where what some clinicians call ADHD plus OCD plus semantic pragmatic disorder, another clinician calls it ASD and Greenspan (may he rest in peace) may have called the same thing a regulation disorder that was misdiagnosed as ASD. What I find over and over is that ASD seems to be the diagnosis so many people can't tolerate. Yes, perhaps there are plenty of kids with just MERLD, but there are also parents who shop around until they get the diagnosis they can swallow and in the end as long as the kid is getting good help it does not matter. Nobody has said people on this forum who have kids with MERLD all have kids with true ASD, but even the mention of ASD gets some people in a big ol tizzy. If someone suggested a few kids with MERLD were purple googly eyed bunny rabbits you might just laugh at how silly and unfitting that is, but if there is even a hint that some kids may have ASD without officially having that diagnosis people get defensive. We haven't met your kid so there is no need to defend. All I know is every clinician we hae seen has called my son's presentation different names and autism has been ruled out many times, but ASD describes all the other labels put on him (ADHD, MERLD, SID) best.

The point was that if a person has a MERLD dx under the current diagnostic criteria, they specifically don't have ASD. It's been ruled out. Kids with ASD have language impairments, but not all kids with language impairments have ASD.

The DSM-5 specifically makes this point. It eliminates MERLD and adds 4 new DXs grouped under the heading "Language Impairments." The 4 new categories may be diagnosed as primary disorders or in conjunction with other disorders. Some kids with language impairments have ASD, but not all kids with language impairments have ASD.

People are defensive because you are suggesting that they are in denial about their child's condition and aren't taking care of the child appropriately or getting the child the help he/she needs. You don't have much room to judge. You clearly don't know much about language disorders or even that much about ASDs. Your experience with your child is your experience with one child. Other people's experience is different. You state that you don't agree with the DSM, even though you don't have clinical or research experience to back up your statements. You are ignorant of the facts and are basing your views on incomplete information.

[Anonymous]

I agree that some of the charges in this thread are outrageous.

I can certianly understand how merld and asd look alike at times -- and how if you are an asd parent, you may wonder why a kid that looks like yours has merld and not asd

But ive had four different professional dismiss asd and dx merld in my kid. Ive specifically asked about asd. Id have to have a pretty explosive personality -- which i dont -- if all these propfessionals have been afraid to level w me and say yes, your kid does have asd

[Anonymous]

I am happy to educate you about the difference between HFA and MERLD but I also feel the need to express my dismay at the approach some on this thread have taken.

My son has MERLD and yes it is different from ASD. To somewhat simplify the difference - there are three criteria for ASD and my son really meets none of them. The 3 ASD criteria are reduced communication, stereotyped behaviors/stims, and restricted interests. My 3 year old son's language is at about a 12-14 month old level so his communication is severely behind but his social communication is typical meaning that he doesn't even truly meet the first criteria. We have been evaluated by 5 different people including a developmental ped, 2 child psychologists, 2 speech therapists, and a special education consultant. Every one of them has agreed that our son is not in any way on the spectrum. Although many kids with MERLD do also have sensory issues and neurological immaturity which can encourage stims and some other things associated with ASD (like reduced eye contact, not responding to their name, etc). My son is highly socially motivated, shares joint attention, has extensive pretend play, wants to be around people all the time, is very affectionate, responds appropriately to others' emotions, etc. In other words, he is missing the key component of ASD which is reduced social intent.

And yes I am defensive. Of course there is nothing wrong with being on the spectrum! If our son was ASD I would embrace that, but he isn't. Instead, when I come to places like this where I need support and a place to discuss the challenges we face, I am met with threads like this where people roll their eyes, imply I am in denial, and that I have shopped for a dx - as if I prefer MERLD to ASD for some reason.

For those of your whose children are on the spectrum, how would you feel if you were met with this response virtually every time you told someone your child was on the spectrum: /eye roll /pitying smile "yes sure your child is ASD. I'm not sure what you have against <X disorder> but clearly your child has the symptoms of that disorder, but if you can't handle it then ok. But really, is ASD even a real thing? It seems to me like ASD is the latest fad dx and I'm sure you must have shopped around to find a doctor to give you the dx you wanted to avoid <X disorder>. Is ASD even in the DSM?" I can tell you how it feels to hear that almost every time I tell someone what my son is dealing with. I feel defensive. I feel like I am being accused of being a bad mother whose denial is hurting her child. I feel angry because the person saying that does not know what they are talking about yet they feel free to judge me and my son.

A big part of the problem is that many different disorders share overlapping "red flag" behaviors with ASD and so people are quick to assume ASD with no real understanding of the ways in which other developmental delays can also encourage those red flags. This is true for clinicians and layman. Many doctors are not at all trained in the ability to pull apart the complex differences between language disorders and ASD, especially in younger children. As I said, for many younger MERLD kids, it is virtually impossible to figure out if they are on the spectrum or not. They tend to have reduced eye contact, don't respond to their name, can seem very socially withdrawn, can often have stress related or sensory stims, etc. The difference for MERLD kids is that, as their language skills improve, these all go away. As younger kids (I mean 2-3 years old) these kids can be virtually indistinguishable from ASD kids and this is one reason MERLD experts suggest younger children not be given a label at all until they are in the 3-5 years old range. There are also serious problems with some of the "behavioral checklist" type assessment tools that test for ASD. The ADOS is the most notorious example. On the ADOS test, when a child can't or won't respond verbally to a question enough for a clinician to assess certain things (such as unusual verbal tics) the test requires that the child get maximum points on that section. This ends up lumping MERLD kids onto the spectrum incorrectly.

What often happens with MERLD kids is that they get a PDD-nos dx when they are 2 or 3. Even then the dx might not seem exactly right but enough of it fits that parents and doctors often accept it. But then as the child gets older and their language improves, their ASD red flag behaviors go away and the parent is left confused because their child still clearly needs language support (and often behavioral help as well) but the ASD dx really no longer helps them understand what is going on with their child.

The other problem is that the therapies for MERLD kids are NOT the same. Yes many of the same floortime, play-based therapies will benefit anyone no matter their dx, but there are some therapies for ASD kids that are not recommended for MERLD kids. The easiest example is ABA therapy. ABA was developed by Lovaas at UCLA specifically for children on the spectrum to address the fact that kids on the spectrum tend to have reduced social motivation and so they require help with discrete behaviors, benefiting from a clear reward/punishment system. ABA can clearly significantly help many kids on the spectrum but for kids with MERLD who have typical social motivation it can be counterproductive. ABA is emphatically not recommended for kids with MERLD by the experts who work with MERLD kids and this is why an accurate dx really does matter.

Anyway, yes, I am defensive. I'm tired of feeling like I have to defend the disorder my child has. We have enough struggles to deal with without uninformed people insinuating that I am not doing everything I can to help my child.

[Anonymous]

OK I'm a PP who first express skepticism and I do think it is possible to have MERLD, I really, really do. But the defensiveness works both ways. I can't tell you how often I encounter the "Oh God not an ASD, no absolutely not." And, yes, I wasn't the PP who said that but I do hear parents go out of their way to say this. There is an alphabet soup of diagnoses that kids who actually do have ASDs get to avoid this reality.

But, OK, I will say it again. A child can only have language delays.

And I would echo the PP who said ABA isn't for all kids with ASDs. My child with an ASD was not a right fit for ABA.

[Anonymous]

Anonymous wrote:I am happy to educate you about the difference between HFA and MERLD but I also feel the need to express my dismay at the approach some on this thread have taken.

My son has MERLD and yes it is different from ASD. To somewhat simplify the difference - there are three criteria for ASD and my son really meets none of them. The 3 ASD criteria are reduced communication, stereotyped behaviors/stims, and restricted interests. My 3 year old son's language is at about a 12-14 month old level so his communication is severely behind but his social communication is typical meaning that he doesn't even truly meet the first criteria. We have been evaluated by 5 different people including a developmental ped, 2 child psychologists, 2 speech therapists, and a special education consultant. Every one of them has agreed that our son is not in any way on the spectrum. Although many kids with MERLD do also have sensory issues and neurological immaturity which can encourage stims and some other things associated with ASD (like reduced eye contact, not responding to their name, etc). My son is highly socially motivated, shares joint attention, has extensive pretend play, wants to be around people all the time, is very affectionate, responds appropriately to others' emotions, etc. In other words, he is missing the key component of ASD which is reduced social intent.

Not attacking you in any way but I'm the Poster from the "Evaluate at Children's in Rockville thread." My Asperger's son is also highly socially motivated with good social intent, has pretend play, very affectionate with family etc. (all the things I bolded) and a rich, highly developed vocabulary but still qualifies for an ASD diagnosis. His communication impairment is only in social pragmatic speech. It does not come intuitively and he has to be taught things like the give and take in conversations (his social communication is developmentally lower than NT 4 yr olds). Just want to correct the myth that kids on the spectrum cannot be "highly socially motivated, shares joint attention, has extensive pretend play, wants to be around people all the time, is very affectionate, responds appropriately to others' emotions, etc." because in DS's case, he is all of those things and still qualifies for an ASD diagnosis due to his impairment in pragmatic speech, repetitiveness, and obsessive interests.

Also, we were told ABA is not the right therapy for him.

[Anonymous]

Anonymous wrote:OK I'm a PP who first express skepticism and I do think it is possible to have MERLD, I really, really do. But the defensiveness works both ways. I can't tell you how often I encounter the "Oh God not an ASD, no absolutely not." And, yes, I wasn't the PP who said that but I do hear parents go out of their way to say this. There is an alphabet soup of diagnoses that kids who actually do have ASDs get to avoid this reality.

But, OK, I will say it again. A child can only have language delays.

And I would echo the PP who said ABA isn't for all kids with ASDs. My child with an ASD was not a right fit for ABA.

I complely agree with this (see above). I have posted before, but am not the poster I quoted.

I even have a friend who got a whole list of dxes for her son who was really struggling and she said "Thank GOD he doesn't have autism. I'll take anything, but that." I heard varying versions of this for a while. The child still had language issues that were holding him back socially and academically, but somehow autism would have meant something really bad to her. She knew my kid has ASD and I made a joke out of it and got a bit sarcastic. Now her child did indeed eventually get an ASD diagnoisis several years later, but I don't say this to imply that all kids with these issues have ASD. I say it because she now doesn't see it as a horrfying diagnosis and she realizes how hurtful it was to have such a negative attitude.

We are all members of the special needs community and yet sometimes it feels like there is a hierarchy of sorts. Kids have varying degrees of impairments, but we are all parents facing challenges and it would be nice if people could stop and think about how hurtful it is to cast a particular diagnosis in such a negative light. You don't need to convince us your child doesn't have autism, just like you don't need to convince us your child can walk. Just try to think about those who have children with autism or children with mobility issues and give us the sensitivity you hope to receive from others.

[Anonymous]

I am 13:48 and I just read 13:43's post. Thank you! You took the words right out of my mouth!

[Anonymous]

Anonymous wrote:

Anonymous wrote:I am happy to educate you about the difference between HFA and MERLD but I also feel the need to express my dismay at the approach some on this thread have taken.

My son has MERLD and yes it is different from ASD. To somewhat simplify the difference - there are three criteria for ASD and my son really meets none of them. The 3 ASD criteria are reduced communication, stereotyped behaviors/stims, and restricted interests. My 3 year old son's language is at about a 12-14 month old level so his communication is severely behind but his social communication is typical meaning that he doesn't even truly meet the first criteria. We have been evaluated by 5 different people including a developmental ped, 2 child psychologists, 2 speech therapists, and a special education consultant. Every one of them has agreed that our son is not in any way on the spectrum. Although many kids with MERLD do also have sensory issues and neurological immaturity which can encourage stims and some other things associated with ASD (like reduced eye contact, not responding to their name, etc). My son is highly socially motivated, shares joint attention, has extensive pretend play, wants to be around people all the time, is very affectionate, responds appropriately to others' emotions, etc. In other words, he is missing the key component of ASD which is reduced social intent.

Not attacking you in any way but I'm the Poster from the "Evaluate at Children's in Rockville thread." My Asperger's son is also highly socially motivated with good social intent, has pretend play, very affectionate with family etc. (all the things I bolded) and a rich, highly developed vocabulary but still qualifies for an ASD diagnosis. His communication impairment is only in social pragmatic speech. It does not come intuitively and he has to be taught things like the give and take in conversations (his social communication is developmentally lower than NT 4 yr olds). Just want to correct the myth that kids on the spectrum cannot be "highly socially motivated, shares joint attention, has extensive pretend play, wants to be around people all the time, is very affectionate, responds appropriately to others' emotions, etc." because in DS's case, he is all of those things and still qualifies for an ASD diagnosis due to his impairment in pragmatic speech, repetitiveness, and obsessive interests.

Also, we were told ABA is not the right therapy for him.

My child with Aspergers can be described the same way.

[Anonymous]

OK I'm a PP who first express skepticism and I do think it is possible to have MERLD, I really, really do.

This is why MERLD parents feel defensive. Can you imagine if someone random, with presumably no medical degree, said to you "OK...I guess I will accept that is it possible that your child has autism." MERLD is in the DSM for a reason. Our dev ped with 25 years of experience gave him that dx for a reason. It DOES exist and kids DO have it, that many people find it difficult to believe and need to be convinced seems strange to me.

I'm not saying there aren't people out there who might want to avoid an ASD dx because they don't want to accept that their child might be on the spectrum. I'm sure there are those people out there. But I know it is also very likely that there are kids out there being dxed as on the spectrum who aren't.

And yes, apparently I DO have to convince you that my son doesn't have austism. Maybe not you specifically, but I can assure you that your attitude is pervasive and, as I advocate for my son I find it difficult to deal with the vast array of teachers, school district officials, and even some doctors who want to deal with my son in a way that is not appropriate for his actual disorder. I can't say enough times that I do NOT think it would be "worse" for my son to have an ASD dx. I genuinely don't fear ASD, don't think it is inherently awful. I am just as much an advocate for neuro-diversity as any other mother of a child with a different way of being in the world.

Just like all parents of special needs kids, we have been through a long, emotional process of doctors, evaluations, uncertainties, etc. But I feel like our journey is devalued and dismissed because the world at large believes either we are "in denial" OR that our child just isn't quite truly special needs if he isn't in fact ASD. My son is special needs and he isn't ASD. That should really not be a controversial thing to say. It does not inherently imply that being ASD is bad - you are reading that into it. It just means that my son is special needs and is not on the spectrum. That's all it means.

[Anonymous]

My child has merld. We've been told he's haad everything from asd, mental retardation and seizure disorder. Each one we've checked out only to be told no. Each time ive prepared myself for that emotionally only to be told, actually, no

[Anonymous]

Anonymous wrote:I am happy to educate you about the difference between HFA and MERLD but I also feel the need to express my dismay at the approach some on this thread have taken.

My son has MERLD and yes it is different from ASD. To somewhat simplify the difference - there are three criteria for ASD and my son really meets none of them. The 3 ASD criteria are reduced communication, stereotyped behaviors/stims, and restricted interests. My 3 year old son's language is at about a 12-14 month old level so his communication is severely behind but his social communication is typical meaning that he doesn't even truly meet the first criteria. We have been evaluated by 5 different people including a developmental ped, 2 child psychologists, 2 speech therapists, and a special education consultant. Every one of them has agreed that our son is not in any way on the spectrum. Although many kids with MERLD do also have sensory issues and neurological immaturity which can encourage stims and some other things associated with ASD (like reduced eye contact, not responding to their name, etc). My son is highly socially motivated, shares joint attention, has extensive pretend play, wants to be around people all the time, is very affectionate, responds appropriately to others' emotions, etc. In other words, he is missing the key component of ASD which is reduced social intent.

And yes I am defensive. Of course there is nothing wrong with being on the spectrum! If our son was ASD I would embrace that, but he isn't. Instead, when I come to places like this where I need support and a place to discuss the challenges we face, I am met with threads like this where people roll their eyes, imply I am in denial, and that I have shopped for a dx - as if I prefer MERLD to ASD for some reason.

For those of your whose children are on the spectrum, how would you feel if you were met with this response virtually every time you told someone your child was on the spectrum: /eye roll /pitying smile "yes sure your child is ASD. I'm not sure what you have against <X disorder> but clearly your child has the symptoms of that disorder, but if you can't handle it then ok. But really, is ASD even a real thing? It seems to me like ASD is the latest fad dx and I'm sure you must have shopped around to find a doctor to give you the dx you wanted to avoid <X disorder>. Is ASD even in the DSM?" I can tell you how it feels to hear that almost every time I tell someone what my son is dealing with. I feel defensive. I feel like I am being accused of being a bad mother whose denial is hurting her child. I feel angry because the person saying that does not know what they are talking about yet they feel free to judge me and my son.

A big part of the problem is that many different disorders share overlapping "red flag" behaviors with ASD and so people are quick to assume ASD with no real understanding of the ways in which other developmental delays can also encourage those red flags. This is true for clinicians and layman. Many doctors are not at all trained in the ability to pull apart the complex differences between language disorders and ASD, especially in younger children. As I said, for many younger MERLD kids, it is virtually impossible to figure out if they are on the spectrum or not. They tend to have reduced eye contact, don't respond to their name, can seem very socially withdrawn, can often have stress related or sensory stims, etc. The difference for MERLD kids is that, as their language skills improve, these all go away. As younger kids (I mean 2-3 years old) these kids can be virtually indistinguishable from ASD kids and this is one reason MERLD experts suggest younger children not be given a label at all until they are in the 3-5 years old range. There are also serious problems with some of the "behavioral checklist" type assessment tools that test for ASD. The ADOS is the most notorious example. On the ADOS test, when a child can't or won't respond verbally to a question enough for a clinician to assess certain things (such as unusual verbal tics) the test requires that the child get maximum points on that section. This ends up lumping MERLD kids onto the spectrum incorrectly.

What often happens with MERLD kids is that they get a PDD-nos dx when they are 2 or 3. Even then the dx might not seem exactly right but enough of it fits that parents and doctors often accept it. But then as the child gets older and their language improves, their ASD red flag behaviors go away and the parent is left confused because their child still clearly needs language support (and often behavioral help as well) but the ASD dx really no longer helps them understand what is going on with their child.

The other problem is that the therapies for MERLD kids are NOT the same. Yes many of the same floortime, play-based therapies will benefit anyone no matter their dx, but there are some therapies for ASD kids that are not recommended for MERLD kids. The easiest example is ABA therapy. ABA was developed by Lovaas at UCLA specifically for children on the spectrum to address the fact that kids on the spectrum tend to have reduced social motivation and so they require help with discrete behaviors, benefiting from a clear reward/punishment system. ABA can clearly significantly help many kids on the spectrum but for kids with MERLD who have typical social motivation it can be counterproductive. ABA is emphatically not recommended for kids with MERLD by the experts who work with MERLD kids and this is why an accurate dx really does matter.

Anyway, yes, I am defensive. I'm tired of feeling like I have to defend the disorder my child has. We have enough struggles to deal with without uninformed people insinuating that I am not doing everything I can to help my child.

I have people try to convince me all the time that my kid isn't on the spectrum. Doesn't bother me at all. He has come a long way an no we didn't do ABA-tried it and it was the wrong approach for him. Even when he had delays, people tried to shoot down ASD. He had expressive and receptive delays (though i understand I must not call it MERLD even if other doctors have since ASD must be ruled out, but many called it MERLD) and these delays affected social communication-but no longer. He makes great eye contact, has friends, has great pretend play, etc. If you don't think he has ASD it does not matter because you are not on my kid's IEP team. All I care about is that our insurance company still reimburses for ST and OT and that his teachers understand his learning style.

I will say this...long ago when I was on Baby Center posting about my babies delays a lot of well meaning moms of kids with ASD tried to gently tell me my kid sounded just like their kid and it infuriated me, though I would just thank them for sharing their stories. I would go out of my way to post about the doctor's who ruled out ASD and all the ways my child is social. I thought HOW DARE THEY?! However, even then I knew, they meant no harm. In the end I realized they had a point. The definitions of all these things will probably keep changing and really any kid with language delays in the expressive and receptive realm s going to be more likely to have social delays or as other posters mentioned they even may stim. The interventions are virtually the same for these symptoms regardless of the label.