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

[Anonymous]

Anonymous wrote:? I could be wrong but I've never heard of any child with Aspergers getting ABA. Isn't the standard treatment floor time or some type of play based therapy and ffacilitated social skills groups?

I am unaware of standard asperger's treatment, but I do know someone (as well as there being one parent who just posted) whose child with an asperger's diagnosis was initially provided with ABA. I have NO idea if that is standard.

However, that doesn't matter for late tallkers due to MERLD (or expressive delays only, or delays due to adhd, dyslexia, global development delays, seizure disorders, genetic disorders, dyspraxia... the list of other possible causes for language issues is quite extensive), as, by definiton, a child with aspergers typically does not present with language delay. A child with HFA DOES. HFA is considered different than asperger's.

That said, the therapy for a child with HFA, which, while it may have some overlap with therapies appropriate for a child with MERLD, is different and based on compliance and teaching social communication skills along with language, rather than focusing on the back and forth matched responsive play-based therapies appropriate for a child with a speech disorder.

[Anonymous]

Anonymous wrote:

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.

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.

And therein lies a HUGE problem. If your child has friends, great pretend play...you've really torpedoed the heart of both the Asperger's and Autism, and yet you still feel your child is ASD. Is it any wonder people all around you doubt you? And you are basically doing this for the insurance mone?

Nope not doing it for money. My child had many of the autism red flags early on. He also is a very visual learner with an amazing memory and some savant abilities. He didn't always have great pretend play. It was delayed and we worked on that. The social stuff took a while too. Kids are learning to be more tolerant of eachother so he has NT friends who just consider him different, but they still like him and he has friends like him too. I think this moves into whether you think kids are ever cured of autism and I don't. I think he has become higher functioning, but his brain processes info differently and his learning style is more like autistic peers than NT. He definitely is not NT and that's fine with me.

I have posted a few other times and am stepping out of this. I have nothing more to say and am not looking to offend anyone or make them defensive. I wish everyone's kiddos lots of progress, many friends and a wonderful life and I hope none of us go broke trying to achieve this

[Anonymous]

Anonymous wrote:

If you want to know why parents are so terrified of having their child diagnosed with autism, it's because parents immediately start reading the blogs of other autism parents once someone suggests their child might be autistic. THAT'S what causes the crazy fear and stress. Autistic Disorder is a severe and lifelong condition. My friends' kids who have it will likely never live on their own without substantial supports, if at all. And that's THEIR assessment of the situation, not me being negative.

Now, the newly coined "ASD" is so loosely defined, it's currently meaningless.

You are about 30 years too late. Aspergers was recognized in 1980 and entered the DSM a few years after that. Recognizing that autism occurs on a spectrum has been life saving for many kids. I have relatives who clearly have AS but never received any interventions because no one understood it back in the day. They were teased and bulllied and have had very difficult lives, into adulthood. I am so grateful that this was recognized in time for me to give my DS a different life.

I believe the new DSM does not include the reference to friends. Many of our kids with ASDs actually do have friends -- mine has quite a few. The way he related to his friends is somewhat different from NT kids, and the reason he has friends at all is becuase of all the work we put into teaching him social skills. Many kids with ASDs can learn to compensate for their deficits. It is a severe and lifelong condition and the challenges change over time, but it can be managed. And, yes, there are the kids with Kanner autism who will never live independently. It is a spectrum.

[Anonymous]

Anonymous wrote:

Anonymous wrote:The problem here is that ASDs are seen as the third rail -- no way does my child have THAT -- so everyone runs around developing other ways to describe what is exactly the same thing. This just perpetuates the sense of shame around ASDs. Jeez.

MERLD is an old diagnosis. It's been around forever. It's not something that was recently developed. The researchers started exploring the differences between developmental language disorders and autism in the early 70's. There continues to be some debate about whether developmental language disorders are entirely separate from ASDs or part of the spectrum. Many researchers now think that language disorders are part of the broad autism phenotype (ie on the spectrum) but are not autism. It's a condition that is related to autism, as are many other conditions, but it's not autism per se.

ASD has a triad of deficits impairments in social interaction; impairments in communication; and restricted interests and repetitive behavior. Kids with MERLD don't have the triad of disorders seen in ASD. They have impaired social communication because they have impaired receptive language and impaired expressive language. Kids with MERLD don't show the repetitive behavior. They don't show impairments in social interaction, except as it is language based. When you improve the receptive/expressive language, the kid shows marked improvements in social communication and social interaction.

I'm one of those who's DS was diagnosed with MERLD and ASD was definitively ruled out. In no way am I trying to run from an ASD diagnoses nor do I fear one. MERLD is not the same thing as ASD or the ASD researchers at NIH would not definitively ruled it out. If it were the same thing, our well respected developmental pediatrician would have diagnosed him has having ASD rather than MERLD.

I can understand why some casual observers might think my DS has ASD because of the widespread coverage of ASD symptoms but I find it annoying that I have to defend his diagnosis to people on the SN forum. Those 'red flags' referenced by some aren't exclusive to ASD, they're also indicative of other disorders which is why diagnosis by a specialist is critical. My DS's social issues are language based and improve as his communication improves. He does not have any repetitive behaviors. Combine his diagnosis of MERLD with apraxia of speech and you have a child with significant communication challenges and, therefore, significantly different socially from his peers. That doesn't mean he's got ASD. I have an older DS with ADHD (primarily inattentive). He, too has some social issues because of expressive/receptive speech delays and anxiety. Red flags, for sure, but not just for ASD. It, too, was definitively ruled out by the NIH researchers and the developmental pediatrician. Those 'red flags' are indicative of developmental disorders, not ASD exclusively.

Yes, this! The life of the MERLD mom feels lonely and isolating often. Unlike autism, MERLD doesn't have local support groups and huge awareness campaigns and megabucks flowing in for fundraisers and charities. Not only do you have a child with challenges, you yourself are constantly challenged and told you are "in denial" or that MERLD, an actual DSM Dx, is a "soft landing" because you "can't handle" an ASD diagnosis. No matter if you have one or three or 12 DXes from separate actual trained professionals that tell you this is NOT autism, everybody else has their little autism "red flag" checklist out, ready to give their unqualified armchair Dx for your child. If you don't accept their wholly unqualified Dx, then its insinuated you don't like autistic children. It gets so tiring defending yourself from this.

My child has severe MERLD and even special needs therapists often mistake him for autism, even when they are told he has a different Dx. You have this whole generation of educators and therapists that can't recognize actual autism. Then at the end of the session, they spend a lot of the time telling me how he doesn't do all the things that their other (mostly ASD) clients do and all I can do is think..."hello....that's because it's NOT autism we are dealing with here! You need to deal with his issues, which aren't the same."

[Anonymous]

I can understand how the difference is confusing. When I took my daughter to the dev ped at age 2, I was pretty darn sure she was going to come away with an autism diagnosis, at least pdd-nos. However, the dev ped (who is highly respected and very often recommended on this board), told me that she has MERLD, not autism. I saw an additional dev ped for a second opinion, and the second dev ped made the same diagnosis (without being told about the first one).

Being a very type A person, I went a little batty finding out all I could about the difference between MERLD and autism. The most helpful source to me was the actual DSM -- the guidelines used by mental health professionals to diagnose.

Here's what it says:
<<DSM-IV 315.32
Mixed Receptive-Expressive Language Disorder
A. The scores obtained from a battery of standardized individually administered measures of both receptive and expressive language development are substantially below those obtained from standardized measures of nonverbal intellectual capacity. Symptoms include those for Expressive Language Disorder as well as difficulty understanding words, sentences, or specific types of words, such as spatial terms.
B. The difficulties with receptive and expressive language significantly interfere with academic or occupational achievement or with social communication.
C. Criteria are not met for a Pervasive Developmental Disorder.
D. If Mental Retardation, a speech-motor or sensory deficit, or environmental deprivation is present, the language difficulties are in excess of those usually associated with these problems.>>

As you can see, item C requires that autism (a pdd) be ruled out. Of course, when both dev peds told me that they did not think my daughter had autism, I asked them why they thought this. They both explained to me that she did not meet the requirements -- her eye contact and joint attention were normal, the language that she did have, she used appropriately with no pragmatic problems, she had no specific repetitive behaviors (flapping or rocking), and the repetitive behaviors she did have were non-specific and not indicative of autism by themselves. Her pretend play was delayed but present and consistent with her developmental level.

She did have lots of non-specific red flag behaviors that worried me -- walked on her toes, mouthed things excessively, severe language delay, banged her head when she got mad, I'm sure there were more. However, by age 3 all these things had gone away except the language delay, which has improved by leaps and bounds and now is in the realm of a moderate delay, no longer severe.

My son is very similar. He is just about 2 and also has a severe language delay and some red-flag behaviors (really loves to open and close things). He also has some motor delays, but they are not as severe as the language delay. I took him to a neurologist recently, and again was preparing myself to come away with an autism diagnosis for him, probably pdd-nos. And I was wrong again. The neurologist didn't diagnose MERLD (not his area, plus my son is still very young), but he said that his normal eye contact, good joint attention, lack of flapping or rocking, and good general engagement were indicative that his problems are not due to autism.

He said his love of opening and closing things is a non-specific red flag and does not indicate autism when accompanied by good joint attention and the other green flags I mentioned above.

This stuff is tough to tease out. Like I said, I was pretty darn sure both my kids were headed toward autism diagnoses. I had been reading anecdotal notes by parents and other non-clincial information, and they sure seemed to fit the bill. However, when I started talking with actual developmental/neurological professionals and reading the clinical definitions, I now understand why they are not considred on the autism spectrum but instead have a language disorder.

I'm not in denial. My head is not in the sand. Quite the opposite.

[Anonymous]

To the previous two posters -- i hear you. My son has been dxed with merld, ive had three professionals rule out autism -- and yet im constantly being treated like im in denial.

[Anonymous]

Ok, I'm officially sick of Posts on this board which claim that other parents are in denial. These diagnoses are often not easily made even by the so-called experts. We're all doing the best we can to diagnose our kids and get them the most appropriate treatment. This board should be a forum where we try to voice support for one another.

[Anonymous]

I'm the OP, and was away for the weekend, and just checked this board for the answer to the question I asked. I expected a few posts with some info. Boy was I surprised!! Obviously I opened a can of worms here. Sorry -- I think my DD might have had something like MERLD when she was younger but she worked herself out of her speech delay and now has just ADHD, which is no picnic either, as many of you know. When she was little, she just didn't get a diagnosis. It's just as well -- as many of you pointed out, it's all about getting the right help. Most of the help we received, we got privately, and they focused on her presentation, not her diagnosis, or lack thereof.

I'm sorry if I stirred a pot here. My best wishes to everyone in their journey with their special children.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

If you want to know why parents are so terrified of having their child diagnosed with autism, it's because parents immediately start reading the blogs of other autism parents once someone suggests their child might be autistic. THAT'S what causes the crazy fear and stress. Autistic Disorder is a severe and lifelong condition. My friends' kids who have it will likely never live on their own without substantial supports, if at all. And that's THEIR assessment of the situation, not me being negative.

Now, the newly coined "ASD" is so loosely defined, it's currently meaningless.

You are about 30 years too late. Aspergers was recognized in 1980 and entered the DSM a few years after that. Recognizing that autism occurs on a spectrum has been life saving for many kids. I have relatives who clearly have AS but never received any interventions because no one understood it back in the day. They were teased and bulllied and have had very difficult lives, into adulthood. I am so grateful that this was recognized in time for me to give my DS a different life.

I believe the new DSM does not include the reference to friends. Many of our kids with ASDs actually do have friends -- mine has quite a few. The way he related to his friends is somewhat different from NT kids, and the reason he has friends at all is becuase of all the work we put into teaching him social skills. Many kids with ASDs can learn to compensate for their deficits. It is a severe and lifelong condition and the challenges change over time, but it can be managed. And, yes, there are the kids with Kanner autism who will never live independently. It is a spectrum.

Currently, ASD doesn't clinically exist in the DSM. Instead, the category is Pervasive Developmental Disorders. It was Lorna Wing who started pushing the idea of a "spectrum." I think spectrum is a really unfortunate word, because people interpret it to mean you can be "a little bit autistic." Spectrum doesn't refer to that; instead, it refers to a scattering of severe issues across a spectrum.

Here's a really interesting, more detailed look at her work that explains it well:

http://www.awares.org/static_docs/about_autism.asp?docSection=3

It's ironic to me that the new category in the upcoming DSM 5 WILL indeed be Autism Spectrum Disorders, but the much tighter criteria will mean that many kids with Asperger's and PDD-NOS will no longer qualify, if you can go by the current field trials. Instead they'll fall into the non-spectrum Social Communication Disorder, or other specific language disorders or other categories.

[Anonymous]

Anonymous wrote:

Anonymous wrote:13:43 again. The heart of an Aspergers, ASD, DX is an impairment in social communication, repetitive behaviors, and obsessive interests. No where does it mention having/not having friends, amount og

B. Would be friends.

299.80 Asperger's Disorder (or Asperger Syndrome)

An Asperger/HFA screening tool must meet all six areas defined by the DSM-IV description of Asperger Syndrome (A-F below) to qualify for a positive rating from First Signs:

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(2) failure to develop peer relationships appropriate to developmental level

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

(4) lack of social or emotional reciprocity

B. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

(4) persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific pervasive developmental disorder or schizophrenia.

This is correct. However, if you read the first bit, it says "manifested by two of the following." So some kids with Aspberger's can develop friendships and still qualify. You don't have to show all those symptoms, just two of them.

[Anonymous]

Anonymous wrote:I'm the OP, and was away for the weekend, and just checked this board for the answer to the question I asked. I expected a few posts with some info. Boy was I surprised!! Obviously I opened a can of worms here. Sorry -- I think my DD might have had something like MERLD when she was younger but she worked herself out of her speech delay and now has just ADHD, which is no picnic either, as many of you know. When she was little, she just didn't get a diagnosis. It's just as well -- as many of you pointed out, it's all about getting the right help. Most of the help we received, we got privately, and they focused on her presentation, not her diagnosis, or lack thereof.

I'm sorry if I stirred a pot here. My best wishes to everyone in their journey with their special children.

To the OP: Just FYI ADHD is one of the more common reasons for language delay. It is much more common than ASD, as is MERLD.
The difficulties with language, and even subtle social cues due to lack of ability to focus typically, severity depends on the child's issues. Not all kids with ADHD have a language delay, but many do.

Unfortunately, most kids with ADHD (not all) cannot be. Diagnosed until the age 5 or 6, where they, as well as MERLD kids, may have received therapy detrimental to their therapy if assumed ASD by the school systems, instead of getting a proper evaluation with a medical professional (who cannot diagnose until older, but can rule some things out)

[Anonymous]

I have a daughter with Merld and would like to hear about experiences with other kids that have the same dx. Can the arguments of other Dx pls cease so I can find comfort and experience with other parents that share the same dx. Thank you

[Anonymous]

Anonymous wrote:I have a daughter with Merld and would like to hear about experiences with other kids that have the same dx. Can the arguments of other Dx pls cease so I can find comfort and experience with other parents that share the same dx. Thank you

PP this thread is from 2012. MERLD's no longer in the DSM (and neither is Aspergers.) Not sure what your point is.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I have a daughter with Merld and would like to hear about experiences with other kids that have the same dx. Can the arguments of other Dx pls cease so I can find comfort and experience with other parents that share the same dx. Thank you

PP this thread is from 2012. MERLD's no longer in the DSM (and neither is Aspergers.) Not sure what your point is.

MERLD is no longer in the DSM, but it's in the IDC and is diagnosed every day. And just like earlier PDD-NOS and Asperberger's dxes, the MERLD diagnosis stands for children diagnosed under the earlier DSM.

Other poster, you can find several Facebook groups on MERLD.

[Anonymous]

Anonymous wrote:You can definitely be MERLD without being ASD.

MERLD is no longer in the DSM but when it was one of the criteria was that the individual did not have ASD. So you actually can't have MERLD and ASD.