Gifted Issues Discussion homepage Forums Twice Exceptional Nonverbal Learning Disability and a social child?

Does anyone have any experience with NVLD/NLD with a social child? DD has a very high verbal score (apparently 99th+ but don't have the number yet) and low scores in visual perception, working memory and processing speed. (Original testing put these at 6th-8th but new testing is more like 30th - still a huge difference but no longer in the "impaired" range.) Neuropsych gave her NLVD, ADHD-Inattentive and anxiety. (Previous neuropsych - whose report was determined to be invalid - said there were attention issues but it was definitely NOT an ADD situation.) When I asked neuropsych about the social component that I thought had to be present for NVLD he said it is more "NLD-ish" since not all applies to her but it is apparently easier than saying super high verbal abilities along with dyslexia, dysgraphia, dyspraxia, math issues, etc.

As I have been reading I am seeing a close affiliation between NLD and AS. My DD is about as far from Aspergers or anywhere on the spectrum as night and day. She is very social and has been from the minute she was born. Her preschool teacher has told me that she believes DD has "the highest EQ of anyone I've ever known." She is extremely empathetic, sympathetic and friendly. She has always been a social butterfly and recently chose to give up a week at her favorite camp to instead spend the week having daily playdates - sometimes 2 in one day. This really doesn't match with my reading of NVLD/NLD.

The neuropsych noted things like using sign language (she took a mini ASL class this summer and has been enjoying practicing) to answer some questions and being "overly dramatic" in her excitement when she enjoyed certain things. He called these "immature" - a very different interpretation than I have ever heard before. I'm not saying wrong - just different. He said she might be uncomfortable in new surroundings and I told him it was quite the opposite. For example on a cruise last month when she entered the kids club area - new to everyone and no one knew anyone else unless they had a sibling close in age - she was totally comfortable from the first minute and walked up to the other kids and started talking to them. He said this could be a problem - she's not reading social cues and apparently SHOULD have somehow been uncomfortable in order to not overwhelm the other kids.

Can someone with more experience try to explain this to me? I have no problem with a diagnosis - anything that will make it easier for the school to understand what she needs and meet her needs is fine. I am just wondering if I am missing something. The exact part of her personality that everyone has always marveled at is now being described as a possible problem. The neuropsych was clear that it was not necessarily an issue - just something to be aware of. I am wondering, though, if the NLD or NVLD needs to have a social component or if this diagnosis could potentially cause unnecessary problems if it's not accurate.

Sorry, I have just recently heard of NVLD and don't know much about it, but in reading your post I was just struck by how this guy's evaluation seems off to you as well as very different from what others have said (e.g., the teacher who made the comment about your DD's high EQ). So the tester thought she should have been acting differently--do other kids actually have any issues with her behavior, or did the tester just think they might? It sounds like she gets along with other kids very well, so I too am puzzled by the tester characterizing this as a problem. I guess you've ruled out an earlier diagnosis--does the current tester have experience or credentials that might give his opinion more weight in diagnosing these LDs? Finally (maybe this is because I am naive and also because our DD received multiple diagnoses this year that I think are off-base, but) doesn't it seem odd that your DD was diagnosed with several disorders? I'm starting to think about this after seeing any multiple diagnosis discussed here, at least when two or more of the diagnoses have similar characteristics and particularly unless the tester is experienced with 2e kids--is this tester experienced with gifted and 2e, so that they might be able to sort out the different behaviors? Having read the James Webb Misdiagnosis book, I think a lot of our DD's ADHD/inattentive traits look more like the gifted behaviors he discusses that can mimic ADHD--which of course means they still need to be addressed, but differently. But I guess maybe if it's becoming too hard (or expensive, or time-consuming) for you to sort out what the real diagnosis is, maybe you should consider what you want from a diagnosis (like, are you trying for accommodations at school?) and decide whether it's worth going through more evaluations. Sorry things are so difficult in trying to sort this out

Best of luck,
Dbat

I have a 10yr old DD who is in the process of getting a diagnosis of AS. As a toddler and young child whenever I wondered about her I would be comforted that she was extremely extroverted, made eye contact, had empathy, needed to be out out out in the world (what i now know was sensory seeking). Teachers used to comment she could and would play with anyone, would never have trouble finding someone to play with etc...

But the thing is as she's approaching 11 it is becoming more and more clear that all those things are true BUT she doesn't read cues well, DOESN'T have good social skills, doesn't understand or use tone of voice etc. What looked like "good social skills" at 2yrs - 5/6yrs was that she LOVES company and the other kids were not necessarily more skilled at tone of voice and various other social skills like genuine reciprocal conversation that she's now obviously lacking. She talked to anyone and everyone with confidence... She seemed fabulously social. She also had a particularly ideal group of peers through preschool, k & 1 and amazing social instruction at school in those years.

I wondered about her as a toddler but the ASD checklists I found (boy lists I now know) didn't fit. If someone had told me when she was 5-6 she had social problems I would have thought they were mad. Now she's approaching 11 am I brutally aware that while she's certainly not full classic autistic that she's certainly not normal either.

I so wish I had an IQ test on her from before the wheels fell off at school, I am pretty sure it would have been high. But she had 2.5 increasingly disasterous years at school (academically not socially) before her first IQ test, where her IQ could not be calculated due to spread (WMI 13th and VCI 96th). Two years of remediation later we had a FSIQ of 131, verbal still 96thm NV 99th and WM 80-90th. Three yrs since the first IQ test we have diagnosed: CAPD, ADD, Dyslexia, we are on the way to an AS diagnosis, and I would say she's got mild dyspraxia.

To my mind, for my daughter, the AS diagnosis makes sense and pulls everything together. But I would not have understood if I had looked at my daughter at 6yrs old and been told what you have been told. Despite my disbelief in her case it would have been true. I obviously don't know your daughter and can't tell you how true it is for her. Just saying I appreciate the possible truth of what the psychologist is saying.

AS in gifted girls, particularly if it's mild, particularly if they are extroverts, is very very hard to pin down. But that is my DD.

Has your daughter ever done the SB5? Both my girls do much better on the NV section of the SB5 compared the WISC or WPPSI, particularly the eldest that I am describing above. I am not really sure why.

Did the NP diagnose her on one visit only? The art of diagnostics is tricky, confounding, and often like peeling away layers of an onion.

What may appear as ADHD may eventually be teased out to anxiety - or even a side effect from an inhaler (random example). I would never diagnose spectrum disorders (mind you NVLD is not - nor is it recognized in the current DSM) without multiple visits along with checklists from teachers, parents and other caregivers of significance.

That being said, I have talked to clients about NLVD as a possibility. With this, I usually see a cluster of physical issues (as you described with your DS), coupled along with some social peculiarities (as opposed to significant impairments as with ASDs), and in the absence of significant rigidity, emotional lability, and/or obsessed area of interest (that seems beyond typical).

Because there is no set guidelines for NVLD, it remains an unclear diagnosis...sometimes used as "Aspergers Light" and other times used to cluster together a host of delays void of social of emotional delays.

Thanks this is all very helpful, although it remains SO confusing...

I was just researching private LD schools (none nearby and all unbelievably expensive. Really - $40k+ per year for elementary school. Wow!) and I saw that some will exclude children with NLD/NVLD from even applying.

Yes one visit, no idea what tests were used. I will get the report in about 6 weeks - this was just from the short conversation immediately afterwards.

I am surprisingly not too worked up about the ADHD-I diagnosis. She gets very antsy whenever she has to do "seat work" - not surprising with her combination of visual perception, fine motor and working memory issues. She has laser focus on anything that involves learning new information though. I am not sure how that one will play out.

MOT's description of her dd socially is very interesting. I will have to mull that one over...

EM: her social "peculiarities" are a big, cheerful, outgoing personality. She is very dramatic and loves to perform whether or not she has an audience. When younger she was always a magnet - especially to the more shy kids her age. I have chalked up any recent social discomfort to a combination of anxiety causing her to respond by withdrawing and a bit of discomfort or feeling unsafe after being around kids with behavior issues who physically hurt her during her awful K year at the terrible magnet school. She is totally comfortable with older or younger kids. Recently I have noticed that *very bright* kids her age love her but more *typical* kids sometimes don't know what to make of her until they get to know her better. She is very aware of other's emotions - she will ask a crying child what is wrong and try to "fix" whatever is causing their distress, try to comfort someone - child or adult - who appears to be in distress, offer words of encouragement, etc. All well beyond her years of experience. Does that make any sense?

Does your neuropsych not schedule a followup where they really explain the results to you in detail? They should.

I would not consider them done until all these questions are answered and you understand why they think what they think, in detail...

DeeDee

I would be suspicious of any diagnosis that seems off. Before I started dealing with my son's gifted issues, my only experience with psychologists was through work in the criminal justice system. If my client's current mental state or mental state at the time of the offense is an issue, each side will have their own psychiatrist/psychologist. The experts will look at the same facts, evaluate the same person and often come to completely different conclusions. How can anyone have faith in a diagnosis when the diagnostic criteria is so open to interpretation? Jurors seem to go with the expert with the best courtroom presence.
I would like to see a study where a group of suspected 2E kids are evaluated by a group of psychologists and see how things change from doctor to doctor.
I am sorry for the rant and that you didn't get an answer that ties it all in for you.

It sounds like your biggest concern stems from the testing, with the spread of verbal (99%) and processing speed/memory/visual (30%).
Maybe just see how she does in school. Alot of posters describe how their kids have lower processing speed scores.
My son had a verbal 99.9% and processing speed 43% at age 6. We've done lots and lots of flash cards, etc., and he's "fast enough" to be able to complete SCAT, OLSAT, and STAR testing with the other children (and do very well). I think all too often, people try to plug their child's test scores into a specific LD. As another poster said, it makes you wonder if you had different psychologists independently evaluate the child, you would probably get lots of different diagnoses.

This is an excellent idea! I have certainly been very deferential in the past to what I thought was the final word--i.e., an expert opinion from a psychologist--only to realize later that there was a lot of controversy about various issues relating to the diagnosis, and also much later that there are specialists who know a lot more about 2e kids than some others. My DH and I have been stymied in our sporadic efforts to learn more about how these evaluations are supposed to work because in many cases the evaluations and the questions are proprietary so it's difficult and/or expensive to get copies. Also there do not seem to be many studies of how well the evaluations actually work in practice--although this is an area that could be very confusing, because how could you really validate way of evaluating, for example, borderline ADHD-I vs. PDD-NOS, etc.? It could be very hard to avoid going around in circles. I personally would like to see some kind of objective tests (like fMRI/neurofeedback) become developed to the point where they become the standard, rather than a questionnaire that even well-meaning people could fill out differently on any given day.

But in the meantime, we have to make do with what we have--which I guess means trying to find a good specialist, trying to find the money to pay for a thorough workup, and doing what we can to get the diagnos(es) that will help our kid the most.

Diagnosing children can be tough, even for the experts; many symptoms overlap, and most of the diagnoses fall along some kind of spectrum of how a child is impacted. I don't know much at all about NVLD, but I have known (through a casual friendship, this isn't someone I know well) an adult who has NVLD. I've also known (again, very casually) a parent of an older child with NVLD. The adult I knew is female, tended to withdraw into herself at times from stress, but overall was a social person. Her challenges were related to understanding math (she just couldn't ever understand it really), and I think she was dyslexic too - I don't know the details, but school had been a struggle for her. Same for the child of the parent I knew... but he absolutely had friends and enjoyed being with other kids.

I think the thing to do right now is to read up a bit on NVLD so you have some idea of what it means, and then wait for your full report from the neuropsych. Our reports were always considered "drafts" until the parent had seen them and had a chance to review and ask questions. Will you have a follow-up face-to-face meeting with the neuropsych? Even if you've already had your follow-up, I would be sure to ask this question and any other questions you have once you've had a chance to read the actual report.

Back to NVLD, I thought the WISC profile that is usually associated with it is a significantly higher score in VIQ than PRI (perceptual reasoning) (I think > 1.5 or 2 SD difference). That doesn't mean that a large difference is diagnostic of NVLD, it just means that if the neuropsych sees that, they would look at other information (parent concerns, child's developmental history, school behaviors, as well as administer other types of tests to clarify why the difference in scores) - and from the combined picture of all the info they have they come up with a diagnosis.

The other side of the issue is neuropsychs do seem to see what they are used to seeing to a certain extent, does that make sense? So if one neuropsych is used to seeing primarily clients on the autism spectrum, they may be more aware of autism traits than a neuropsych who is usually seeing kids with OCD for instance (that's just an example I'm pulling out of the air fwiw). When there are so many overlapping symptoms and traits between diagnoses, it's not out of the realm of possibility for one neuropsych to see one thing and another perhaps see bits and pieces of something else... particularly when a child's diagnosis is very borderline. The thing I think is important overtime is to look for consistencies in profiles (is your child scoring with the same pattern on the WISC etc) and how is she impacted in *life*. If a diagnosis makes sense, go with it. If it doesn't make sense, use what does make sense in terms of accommodations that will work for your child, and then move forward and know that the diagnosis may very well change. It's not unusual from what I've seen for parents of children with challenges to see the diagnoses evolve over the years as their child matures.

Best wishes,

polarbear

There is a Yahoo! group called GIFTED-NLD-AS that is for parents (and a few older kids post, too) that have kids who are gifted and also have a non-verbal learning disability or Asperger's diagnosis. You might want to join that group and put your query to them; there is a lot of NVLD experience out there! My DD (age 17) has a NVLD, but she is quite an introvert and is not great at social cues. However... she has an older sister that is a true extrovert and very good at social cues who I also suspect has a NVLD, but it is less severe and was never formally diagnosed. I think if you email the address below and tell them you have a recent diagnosis of a kid with a NVLD and high IQ scores, you can easily join.

Gifted-NLD-AS-subscribe@yahoogroups.com

Pemberly...

Social quirks are sometimes just in the fabric of who we are. Your dd sounds energetic and delightful. When I start wondering about diagnostically relevant social struggles is when kids are struggling with peer and adults alike. With kids along the ASD (especially the kids with more subtle traits vs full-blown dx), there is often an almost imperceptible misaligment of emotional, verbal, energy and body language reciprocity. It might be as obvious as missing the "uh-huh" pauses we make during stories. Or as subtle as failing to smile in return (even for the briefest moment) at an enthused greeting of a friend. These kids are often misperceived as rude, pushy, immature, defiant, or even arrogant due to our nearly unconscious factoring of social nuances.

Even in medicine of the body, a diagnosis may change and evolve (from gasteroenteritis to IBS to celiac) over time. Whet is frustrating with psychological /developmental diagnostics is that the "answer" does not easily lead to a simple regime or cure.

Hang in there!

I think I may have mild NVLD. I've always been very social, though I dislike huge parties where I don't know anyone and I'm a little physically awkward (I'm definitely no athlete). I've always had plenty of friends and I'm fairly outgoing. However, I have some mild Aspie-ish traits, while at that same time being very neurotypical in other ways.

My spatial skills are extremely poor and I have virtually no mental maps of anyplace. I could not draw a mental map of my town with any accuracy at all and I cannot give directions. As a child I had significant difficulty learning to read a clock. A friend who is an OT says my visual-motor integration skills appear poor. I also have a hard time recognizing faces. All these are possible NVLD symptoms, I believe. BTW, none of this was ever recognized in school, where I did fine and was in the gifted program, but my math skills were always far behind my other abilities.

Thanks again for so much useful information. If I am understanding correctly there can be 2 different uses of this diagnosis - one implying an Aspergers type profile and one just a cluster of results where other skills pale in comparison to the super high verbal abilities. Am I interpreting correctly? Most people, however, are not likely to understand this dual purpose and may assume/assign social issues to DD that aren't actually a problem. (I had to laugh at the idea of DD showing subtle traits that we overlooked. I vividly remember the 2 year old who used to "mirror" whatever body language she saw. Whenever a well meaning adult kneeled down or bent over with their hands on their knees to make eye contact and speak to her on her own level DD would do the same, making her eye level even lower...) Is it possible that her social skills are actually advanced - like her verbal abilities - and what we may be asking her to do is "dumb it down"?

I checked out that yahoo group - I will need to set up a Yahoo account to join. Thanks. Again though it is listed as Gifted NLD/AS - this points out where my discomfort is coming from...

The other day we were at a birthday party - ironically for a new friend she met on that cruise where she "should" have been seen as making the other kids uncomfortable. Huge excited hello, big hugs for the birthday girl. Then all of the kids off in their own direction to play in the large play gym where it was being held. I observed to see if I should be concerned. DD would have much rather be playing with another child than on her own but respected the "rules" of this group that all were playing on their own. Once a group started playing together she joined. Later, after the limo ride (don't ask!) back to the birthday girl's home she was 100% one of the group - as if she had known all the kids for years. I realize my vision may be skewed but does this sound like a kid who has social issues? Yes she was a bit sad when she had to play alone at first since she is VERY social and would have preferred to be with someone right away but she adjusted to the group dynamic and followed their unwritten rules.

I had tried to find someone who specialized in 2e and went through Dr. Beljan to get the referral to the first guy we saw last November. That was a disaster - totally useless "report" that was deemed to be invalid. When I spoke to this neuropsych about his 2e experience he said that his practice has found that you get better results without a specific area of specialty - you diagnose without blinders on so to speak. He assured me he sees many, many gifted kids (and the area where he is located makes me believe that) and he was highly recommended by our consultant. I can't try to substitute my own untrained opinion for his on things like the ADHD-I diagnosis but I can recognize that it is known to be an issue with gifted kids. Yes, we will be going back for a follow up meeting after the report is written. In the meantime the psych plans to speak with him - hopefully that will help.

I have now entered the discouraged almost panicky part of this journey. I am hoping the psych we found will coordinate with this neuropsych and together they will present the information in a way that will help the school understand how to meet her needs. I just can't help the feeling that with the principal already making very, VERY poor decisions for DD we may just be providing her more weapons for her arsenal rather than ways to improve things. Unfortunately we had to decide that day about releasing the yet-to-be-written report into her educational file. If the district was going to pay for it we had to sign all the releases before the testing began. It is now going to be a part of her permanent record - good, bad or indifferent...

It seems that you are not seeing any problematic social skills. Trust me, if they are truly impaired (again beyond personality traits), you will know. I haven't mentioned this earlier, but anxiety can seriously inhibit a child 's (or anyone's) social skills or give a false impression. Sometimes I see kids who act really odd or "goofy" in their early sessions, and it came down to their nervousness. Examples: one child who wanted to spell his answers to my questions, another who talked the entire time with a pillow covering his face, and lots who laugh and get really "silly".
Your counseling psych will be able to give you a clearer impression of any concerns socially, as dd has (or will have) a relationship there.

Got the pysch report today and PsyD gave the following diagnoses:

Disorder of Written Expression
Expressive Language Disorder
Anxiety Disorder NOS

Does this complicate things or back up my confusion anout the NLD diagnosis? I know NLD is a neuropsych diagnosis not a psychologist diagnosis. I am very confused, though, by so many labels. Psych did not indicate any social concerns other than DD's "sweet and kind nature" could be misinterpreted as weakness thus potentially making her a target for bullies.

Otherwise this report backs up 100% what I have been telling the school and asking for in terms of anxiety control. How does it work with the psych and neuropsych now? I think both are planning to be at the next IEP meeting. Are these diagnoses something they will disagree on or just the way their different specialties address the same set of facts?

p.s. Thanks intparent - I joined that Yahoo group. I have been reading other people's stories and I have to say they really don't seem to mirror our experience. The descriptions by the parents there really seem to highlight serious social/behavior issues which we (fortunately) don't have.

Hi Pemberley,


Can you have your professionals talk? And then conference with you? Ideally this should happen before they both show up at school and confuse everybody. They should be able to get each other and you on the same page about what exactly they are seeing and why they think what they think. It is possible you can get them to agree if they talk. Even if they do not ultimately agree on diagnoses you should be in no doubt of what each of them means by their diagnosis.


That seems like the most important thing.

Don't panic now-- just keep asking questions and learning, and I think you will get some clarity from your pros.

DeeDee

It sounds like the psych's assessment fits very well with what you've experienced with your dd. I would bring/fax the report to the neuropsych and discuss your concerns with the NVLD diagnosis, maybe discussing that you've had a chance read up more about NVLD and that the social issues don't seem to fit. Hopefully, you don't have a narcissist on your hands with the neuro. I think it's fair to ask how social behavior is accurately assessed in the midst of untreated anxiety (as the delay of such assessment is clinically appropriate). In the long run, the school may not even be aware of the specifics of an NVLD dx, as it is not yet recognized with a controlled set of diagnostic criteria.