Another MERLD question

I am new here and found this site based on another discussion about MERLD. I didn't want to take over her post, so I decided to start another one.

When my son was 2 we had him evaluated by EI as he had only 10 words or so. He started speech therapy 1x a week and moved up to 2x a week 6 months in. He is now speaking over 150 words and is using some short phrases. He was diagnosed specifically with MERLD in March and it was a relief actually. He is about to move up to the school district program and I am very hopeful about his future.

My main questions is generally do any of your MERLD children out there also show some of the red flags of Autism. This was ruled out for us during the medical diagnosis, but the school district brought it up again. My son is very awkward socially and does not yet have any imaginative play skills. In my head this is based on the fact that he doesn't have the skills yet to have a conversation with a friend and how can he even be expected to make up an imaginative scenario when I can't get him to understand anything but simple requests. Am I being blind? I feel as though this area should improve greatly as his language also improves. Please tell me any of your experiences.

Thanks!

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After my son turned 3, the psychologist we had taken him to said he had full blown autism. The test showed that he had no imaginative skills (there was a part about a birthday party, so how would he know what to say about a birthday party if he didn't have the language skills to verbalize that?) We had him tested at the school district because the pediatrician disagreed with the psychologist's results. My son was diagnosed with MERLD by the school district. Echolalia was the distinguishing feature. He was in the speech program 5 half-days a week, sees a speech pathologist twice a week, and neither of them have brought up the autism diagnosis. The things he got wrong in the speech pathologist's initial evaluation were things I never exposed him to. Among the picture cards were a knife, which I never used around him, and an oven, which I never let him near :) Before he was in school and speech therapy, my son was awkward socially. Like you said, although he has many friends, he did not have the language skills to have a regular conversation with them. He does now, even though he mixes up some of his words, LOL He also has a great imagination and is able to communicate his needs and feelings much better now. He also never had the red flags of autism, such as stemming & repetitive movements. He has a sweet little girl with autism in his class, she is going to an autistic Kindergarten program next year. She is nonverbal and flaps her hands around a lot, but she is still able to play with the other children just fine from what I can see.

Our cousin is a retired school psychologist who worked in a school district for 30 years, and he said that a child may show symptoms of a syndrome without actually having that syndrome.

Hope that helps!

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Thanks for your reply. My son does none of the hand flapping or repetitive movements either. He does have some Echolalia which can be a sign of either I had thought. How old is your son now? It sounds as though he has made great improvements. We start a short summer school program on Monday and then the half day preschool run by the school district int he fall. I am hoping to have a very positive year with a lot of advancements. I love hearing from parents whose kids are a little older than mine with success through therapy.

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My son just turned 4. He'll be in his 2nd year of preschool this fall :)

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Yes. When my son was 4 his private speech therapist suggested that he was autistic/PPD and sent us to Texas Children's Hospital to the Blue Bird Clinic where he was diagnosed with MERLD. At 5 and again at 8 his school teachers and school therapists suggested autism evaluations. Autism was ruled out by evaluation 3 times. He did exhibit "red flags". When he was smaller, he was almost 17 m before he walked, had echolalia, adhered to his routine, he would line his cars and other toys & objects up, lay his cheek on the floor and study them from the side for long periods of time, and he had an extremely high tolerance for pain. When he was crawling he got his fingers caught in a mousetrap, but he never cried or made a sound only tried to shake it off his hand. The school noted his social awkwardness, lack of imaginative skills, and trouble with pronouns and prepositions as red flags. But, he also exhibited many behaviors that were red flags that he was not autistic. These received less attention, but I've never failed to bring them up.

I don't feel you're being blind and I've always been of the opinion that nobody knows your child as well as you do. Your theory is very logical.

I believe imagination, like most everything, develops very differently for all of us. Just like every other facet of their lives our kids will have to work a little harder at developing theirs than others will. I believe we can help them along by playing with them and showing them first-hand how to use their imaginations. Mine is eleven and he's caught on, I'm sure yours will too. :)

No two humans develop the same and I believe it's perfectly okay to disagree with a few of the cognition theories out there.

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My son is 14 months old and we have just begun the EI process. He is not walking yet - close, though - does not respond to his name, does not point and does not say any words yet. Babbles up a storm. He also gags on solids.

As a child he is very social, smiles and laughs, plays peek-a-boo, loves to be tickled, plays well and appropriately with toys, laughs appropriately (for a one year old :) ) and makes eye contact. If a stranger comes in our home he is curious about them and tries to interact - brings them toys, etc. Right now he is not exhibiting any repetitive or stimming behaviors, aside from the usual behaviors of a toddler.

On his initial screening he passed all areas but received a zero in the communication area. The more I read, the more it sounds like MERLD.

Just wondering if you could share your diagnosis experience?

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My son was 34 months old when he was diagnosed. At 14 months it may be a bit too early to determine, but I am not sure of this. It all has to do with what they can understand and what they can express. At the time of diagnosis my son was at a 21-27 month old level for receptive language (depending on which test score) and a 22-25 month old level for expressive language. My son was horrible at his screening. He was so scared that he did not do his best at all. I was expecting the worst possible diagnosis, but walked away hopeful. He was evaluated by a Dev. Pediatrition, Psychologist, OT, ST & DT. One of the main issues we have with him is his ability to follow directions. He just doesn't "get it" a lot of the time. I have to repeat everything numerous times and use gestures to help get the point across. My daughter is 17 months old and I can tell her to go get her shoes and she will take off to find them. With my now 37 month old son, I have to walk him through the process and be very specific (get your Lighting McQueen shoes by your bed in your room) to get any action. It can be quite frustrating. He has had a language spurt recently though, so therapy is continuing to work and there is definitely a lot of hope. I believe that if he were tested again, he would show a ton of improvement.

Regarding any "red flags" that I notice with my son, he eye contact is OK but only if he wants to pay attention. He is still very self-directed (stubborn) and does not adhere to adult direction that well. He does occasionally line things up but it is rare, it is more common for hi to group like things together but I believe this to just be a toddler "thing". He is very antsy and his attention span is poor. His play skills are delayed also (27 month level at screeening) but I think this is due to his language delay. He is beginning to show signs of pretend play and does play with his toys appropriately, but has poor fine motor abilities. He HATES birthday parites with a passion (will run out of the room), but he is OK at restaurants and stores etc.

Unfortunatley there is not that much information out there about MERLD. This site is not very active, but hopefully you can get some answers. Good luck

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Hi...new to the site but can definitely relate to your post. My 6yo daughter M has MERLD but was formally misdiagnosed with autism first when she was 3. She did seem very much autistic at the time, and the diagnosis was made by a specialist in autism, but it turned out she wasn't autistic at all (MERLD has been the conclusion in her last three evaluations). We went back and forth a lot about it but basically it became clear once she outgrew toddlerhood that the diagnosis was wrong. She never had classic stimming but the signs that got her the diagnosis initially were being socially withdrawn, which she still is in peer settings, and having considerable echolalia (which she outgrew). She also had a tendency to meltdowns, which they drew the conclusion was "sensory" issues, but this too has gone away and I think she just used to get overwhelmed. Nowadays she is just like any other 6yo girl at home, very bubbly and interactive with typical interests and very typical play habits, but she is just really struggling with language and still needs a lot of support at school as a result. She is attending a special program for kids with language disorders.

But in any case, back then she couldn't understand or use more than a word or two at a time, and I can't see how anyone can have normal social interaction or pretend play with that limitation, esp. combined with a natural tendency to shyness and the normal turmoils of toddlerhood. She has always been good at trying to conceal how poor her receptive language is, so it was missed for quite some time that she barely understood anything anyone was saying. From what she asks me to repeat for her nowadays I suspect she has straight up auditory processing issues like CAPD in addition to the MERLD. Her hearing was fine but maybe the world just sounded like gobbledygook to her.

She attended autism programs for nearly two years, and even after the diagnosis was changed, we did have issues with a school district trying to push her into an autism program anyway. I got the feeling that it was easier for them to diagnose kids like her with autism because there was an existing class they could place her in that way without having to tailor something specific. But M never made any progress in autism classes, and I think it is because they target something different than what is going on with MERLD. The autism programs M was in with the school seemed to approach language delays as being caused by an inherent problem in social referencing, so they would work on building motivation to interact as a way to build language. M never had problems with social referencing. What she needed and still needs is more along the lines of intensive listening comprehension and help learning to verbalize her thoughts.

In any case, I would read up on the autism interventions and determine whether it is a match for what your child needs before going forward with autism-based interventions. I have gotten the feeling that there is a kind of a tendency by some professionals to assume autism just because of social awkwardness, and if a child isn't really autistic, going through autism programs can be a kind of a waste of valuable time and effort (as we discovered).

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Thank you so much for your post! It sounds like we have a very similar battle. I am glad to hear that your daughter is doing so well. My son is starting his Early Childhood preschool in 2 weeks. I am excited to see how it goes. If it wasn't for his echolaila & "social awkwardness" I would not be at all worried about someone trying to label him as autistic. He is talking about "friends" now and will go up to kids on the playground and say "Hi friend", but that is as far as it goes b/c he is still lacking in conversation skills. He is also better with younger and older kids than his peers. His pretend play is starting to emerge, he is flying his planes and helicopters, he is playing with little people, he is cooking with a kitchen set etc. We'll see how much progress we can make over the next 6 months to a year. His IEP has goals that will help with all of this, so he should be getting a lot of attention and help to build these skills as well as his language.

Good luck to you! I love hearing from parents with older kids who had the same problems as my little boy. Gives me a lot of hope for our future.

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HELLO,i also have a six year old little girl with merld. i would love to be able to speak to u alittle more . my zoey just started 1st grade this year and she is very excited about it. she is a very loving child,likes to be around other children but i think sometimes its hard for her because they may not understand her fully. She was diagonesd when she was 4 but has come such along ways! The only thing that really bothers me now is she worries aboutr everything. for instince her teacher told me the other day she didn't won't to come out when the bell rang because it was cloudy.Shes scared was storms but it wasnt even dark outside,just cloudy. She is scared to stay in the house by herself,she tells me if the lights are on the house is going to burn down. I try to reasure her on these things but she has major melt downs sometimes. i am not sure what to do on things like that.does your daughter worry alot about things she shouldn't or have meltdowns?

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Hello everyone - I'm new to this board and am going thru some things that sounds so similar to what all of you are. My son is 5 1/2 and we have not yet had a MERLD diagnosis, however he has been tested every year since he was 20 months, only to be told he has a language delay. But after reading all of your posts and doing a little more web research, I feel strongly that it could very well be MERLD. He started Kindergarten last week and I have an appt with his teacher already next week. She is curious to talk to me about his test results over the years and learn more about him in general. He does not express himself well at all and doesn't always seem to "get it" when spoken to. He is very social and likes to play with friends, although they don't always understand him. He cannot converse as his peers do.

I'm hopeful as this sounds like it could solve our mystery as to what our situation my be, but frustrated as we have never before gotten this diagnosis and I've never even HEARD of this disorder before today. I think it could be because my son can speak some and has been diagnosed "delayed" by around 7 months, so perhaps they've never thought MERLD could be our situation.

However, after reading all you have to say above, I am very interested in what the school's SLP would say about this... does anyone out there have a child that received a late diagnosis of MERLD? It sounds like so many here found out around 1 1/2 - 3 years...

I am hopeful that this could be it and when can received proper intervention. Lord know I've been praying for an answer/guidance...

Any thoughts/suggestions would be greatly appreciated.

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My daughter is 7 and has just been diagnosed with MERLD. In kindergarden they thougt she had Asperger(mild form of autism) took her to her peditrician and that was ruled out. In first grade they thought it was ADD. She just simply could not keep up. I finally took her to Childrens Hospital and she was diagnosed with MERLD. She is in 2nd grade know taking some speech language therapy but she is still struggling to keep up in class. She has alot of friends but sometimes seems to not fit in with them. At home she is very active bright and bubbly! Loves to ride bikes, scooters, play ball, swim. When she does get tired she is still acceptable to tantrums. Yes even at the age of 7. Rushing her just causes her to go into a major tantrum.

But for the most she has never had a speech delay and far as learning to speak. I am just know noticing she does not have the same conversational skills as her peers. She has a hard time at school and some social situations but for the most she is just like any other 7 year old constantly on the go playing.

I guess my question is for those of you who have had your children in Speech therapy does it help and are your children still sitting in the average classroom environment or are they taken out to special classes?

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Hi there - I am new here. I am SURE that my nearly-six-year-old son has MERLD, but had never heard the term until I found this site two days ago. I live in the UK and healthcare here is a lot less pro-active than in the US. I first took Richard to my family doctor when he was three because he was so untalkative and unresponsive in general. Shortly afterwards a speech therapist mentioned Aspergers / Autism. However, two different paediatricians subsequently thought he was merely introspective and with a mild speech delay. A recent in-depth assessment interview (with me) scored him too low to be considered in the range of either the autistic or Aspergers spectrum, but the Doctor admitted that there "clearly are some autistic characterisitics". I decided to do some on-line research myself and here I am, reading all your stories and hugely relieved to have found a diagnosis that fits so well with Richard's history and current issues (i.e. that his speech is laboured, sometimes very noticeably so.) The last three years have been confusing and worrying, but I am almost relieved not to have had a too overly medicalised experience. I am slightly concerned when i read the developmental scores and statistics that many of you, or rather your children, have been given, and from such an early age. My husband has always played down Richard's speech issues, and just sees him as the most wonderful boy in the world. I keep saying to him, he doesn't see Richard so much alongside his contemporaries, so isn't constantly aware of how his speech and comprehension lags behind others. But in a way, he's right. Richard is confident he's loved, has an easy-going nature, loves reading and writing stories (which have very weird sentence construction and vocabulary!) and so, he's different. Of course, I'm his mum and mums worry and I never ever want him to feel sad - so I am now determined to seek out a good speech therapist who understands MERLD so that he can have the best opportunity to make the most of school, friends and life. But I am very determined not to see him or talk of him as a Boy With A Disorder. I am sure none of you see your little ones only that way either, but i know myself how all-consuming parental worry can be. Modern medicine, for all its wonders, shouldn't ever define us. A language disorder isn't what I'd wish for Richard, but perhaps he's got a richer inner or creative life as a result of this. Perhaps not, but who knows how anything will play out for our kids? Best wishes anyhow, to all of you.

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Hi Leonia510 - I understand your son is 11 years old and was diagnosed with MERLD. My daughter is close to 6 and school has been dificult - both in behavior, retention, comprehension. We have her in speech and continue to work hard to help her. She is repeating Kindergarten for both social and academic reasons. My question is - does it get easier? Is learning new things still a challenge for him? Socially is he communicating and interacting normally with his peers? Does he still receive special services at the school? Any information would be greatly appreciated. We are just starting this long road and am ready for the challenge - just hoping for some insight into what the road may hold.

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Hi Mecca, many MERLD children do show signs of autism. Many are listed initially on the autism spectrum. My son's repetitive behavior and my daughter's behavioral issues initially screamed *autism spectrum*. However, those issues have lessened considerably and the MERLD has shown through. Just this morning, my son told me that what I was saying to him made him feel mixed up and that if I get him a new brain, it might help. I just reinforce that everyone learns differently and understands differently. I have some good information on my merldworld.com site. I will be updating it this week. How old is your son now? My son didn't do anything but parallel play until he was in late first grade. Now he is a social butterfly. The thing is to find a school that is small and not so intimidating, a smaller teacher to student ratio, preferably with teacher's aides, and let him find his way with their help. Live life normally. If MERLD is all that you have to deal with, then he will. Just remember that each child is unique and has their own timeline.

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Living life with MERLD does get easier with time, attention, normal living with accommodation, lots of speech therapy, reading and math help. I've been spending the past year reading these posts and I've noticed a common element: hope and faith in our children. MERLD has common elements and drawing upon you wonderful, caring parents continues to give blessings on our MERLD world.

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Hi, Richardsmum! I agree that MERLD is probably in your case, speaking not as a professional, but as a mom who has two with MERLD. My advice to you is to keep on as you are doing, and find a pediatrician that will work with you. Definitely speech therapy--as much as you can get. I know National Health works much differently (I went to school in Grantham for a short while). So you must be extra diligent to make sure your son doesn't fall into the cracks of red tape.

Check my first post on merldworld.com for an example of how to deal with the sentence construction issue. I am writing a book on how parents can help their children live with this disorder and teach their children to manage it. We are their only advocates and sometimes must fight very hard to get them the extra attention they require and deserve. Keep loving your son as you and your husband do, live life normally, but use every chance you can do build those brain connections for your son.

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