After 22 months, I finally got a report and its worthless. What do I do now?

[MrsRobinson]

Its been a long time since I was here asking about how to go about getting dd evaluated. I suspected ADHD inattentive and dysgraphia.

We were referred by our pediatrician to a pediadtric Neuro psych for evaluation and testing. He also started her with OT right away to evaluate and address her handwriting issues. The OT said she didn't think she had dysgraphia but dd was all over the place with a few different things. She addressed the toe walking, visual spatial issues, handwriting, auditory processing, and sensory processing. We went weekly for 3 months. Then she "graduated" her and sent us home with 2 levels of a handwriting program to use at home.

We waited forever for the neuro psych, went in just for a consult. He said let's start with an IQ test. You should be able to get that free with the school district even though you homeschool.

So we did that. The testing proctor at the district was great. She got us in that week! She asked a lot of great questions. She said for what we were aiming to figure out, an IQ alone wouldn't tell us much. She recommended we come back the next day for a WRAT. So we did. By the end of the day, she emailed me all the results with a few helpful comments and suggestions and an explanation of what services dd could get if she were in public school. 😂 I forwarded those results/emails and all the OT records to the Neuro psych immediately. I confirmed the following week that he got them and asked what should we do. He said he'd email us a report and recomendations. 

I waited ages with nothing. He didn't respond to my emails or voicemails looking for the report. I finally called the office manager and asked why it was taking so long. She came back and said he wants you to bring her back for testing. Okaaaaay. 

Waited forever again and a week before her appointment, they called and said her insurance won't pay for a testing proctor so they have to reschedule her with the ped Neuro psych himself. Which, I didn't even know she was scheduled with someone different in the first place. 

So we waited forever again (again) and we were prepped for the big 3 hour testing. I had a healthy snack and bottle of water for her. Chapstick, tissues, the whole nine yards. 

She was only testing for an hour. 

That was in September and I haven't even made any effort to get the results, I'm so frustrated with this guy, what's the point? He's an hour away and I have a lot of other medical needs in our family so finding a sitter for appointments that go nowhere is just so aggravating. Plus, I feel like we are doing pretty well right now with our own accomodations self diagnosing ADHD.

I just got an email from their office that was so cryptic, I almost checked it as spam. Well all it contains is a re-hash of her test results that the school district and OT did 18 months ago. It says the tests he did in Sept were the Connor's CPT 3 and ADOS 2 . He came up with the following dx:

ADHD Impulsive                                            Learning Disorder with Math                      Dysgraphia   

No recommendations. No suggestions. No follow up request. Nothing.

Okay so after that novel, what would you do next? I'm considering waiting until 7th or 8th grade and having her re-tested  because I'd like her to have acess to accomodations on standardized tests in high school if she needs those. I'm also wondering about meds for driving. But again, all that can wait.

The only thing I'm wondering about addressing now is math. She is severely behind but we have made some good progress lately and there are only tears once a week or so rather than daily. But what is supposed to happen with "learning disorder with math" ?! That doesn't even sound like a diagnosis!!

Thanks in advance for reading my story and any thoughts on next steps. 😊

Edited January 23, 2019 by MrsRobinson
Wrong test listed and missed a test

[Storygirl]

Ugh. I would be so frustrated!! That neuropsych sounds like a dud. You have a record now of the ADHD and the dysgraphia, so that's worth something, even though it's a different type of ADHD than you expected. The Connors that he ran is for attention, and the ADOS is for autism. Did you suspect autism or ask for him to test for it? Was there something in the information that you sent that made him think that was a possibility?

The proper diagnosis for the math disability, according to the DSM5 is Specific Learning Disability in math. Sometimes called dyscalculia. So she has been diagnosed with a math disability, as well as ADHD and dysgraphia. Dysgraphia, by the way, is called Specific Learning Disability in writing by the DSM5.

If I were you, I would call or write and ask for the full written report. Whether or not that will get them to send you anything else, I don't know, but our psych reports (we've had three) have been pages long, with lists of all tests, descriptions of the results, and recommendations for therapy and/or intervention at school.

It sounds like your school district was easy to work for and that you got some helpful information from them. If the email you received from them was not in report form, could you maybe ask them to write one up for you? That way you have something better in writing than what the NP provided, in case you never get anything further from the psych.

[Storygirl]

Okay, so given the dysgraphia, the visual spatial issues, and the problems with math, I am wondering about the IQ scores. I am not familiar with WRAT. Did that test give you a score for verbal and another score for nonverbal (visual spatial, processing speed, etc.)?

The constellation of issues you describe is often found in individuals with higher verbal and lower nonverbal scores. And individuals with that profile sometimes have difficulty with social cues. My son has this profile and, in his case, it is severe enough that he has been diagnosed with nonverbal learning disorder, which has some crossover with autism. Seeing that spread of scores might have triggered the NP to test for autism in your daughter.

[MrsRobinson]

@Storygirl Thank you so much for your responses! 

I agree with your idea in your 2nd post about why he tested for Autism. (No, that was not discussed and I had no idea he was testing for it.) It is really interesting because she is very verbal, she is a social butterfly, but too much! Way too much. She is terrible with social cues. So is that ADHD inattentive or Autism? Apparently its neither! Lol! 

They are supposed to be sending a report in the mail but the email was unclear if it was the same thing or something more detailed. What they emailed me was closer to clinical notes. There were no test results or scores.

The testing proctor with the district sent very thorough reports. This is what the report for the WRAT says about itself to give you an idea:

The WRAT4 is a reliable norm-referenced test that has been standardized to assess core academic abilities in basic reading, spelling, comprehending sentences, and math computation.

There weren't verbal and non verbal scores for that. The scoring was: standard score, confidence interval, percentile rank, grade equivalent, and performance level for those categories quoted above. I think this where the math dx is coming from. She scored literally off the chart in reading and comprehension (99+%ile) but extremely low in math. (7th%ile)

I asked the testing proctor what the testing looked like for math and she said some of the problems dd would just say "I haven't learned that yet." But when she gave examples, it was definitely things she's learned. So I put the examples in front of dd and she could do them but I had to remind her of what the steps were. That's how she is with math. She doesn't know where to start and struggles with retention.

On the IQ, verbal was above average and not verbal was average but a "relative low" because it was significantly lower than all her other scores.

 

[PeterPan]

Did he detail the scores he got with the ADOS? Yes, it was a good one to run, given the profile. How old is she? It should not be taken as the only thing to answer the ASD question. Did the psych seriously spend only 3 hours total with her? In one sitting? Or spent one hour?? You can't do the ADOS and the Conners and more in one hour total. 

This is all screwball. Even our jerk neuropsych who got ds totally wrong on the ASD question didn't botch it as badly as yours did. 

It sounds like the school was actually offering you some help. Why are you poo-pooing their writing? SOME schools are actually doing good, evidence-based writing intervention and some have testing and interventions that might benefit her. It might be better to dig into whether the school is actually doing good intervention before deciding. I would ask them if they have an ADOS-trained team. Like just for your trivia, ask. If they do and if they ran further testing, they could spend the time to do things properly.

Really, you have so many questions unanswered here. Sounds like you got a hatchet job, just doesn't even make sense. No family history, no ADI-R or other mental health forms AT ALL??? Nothing??? I mean, nuts, if ASD is on the table they should be screening other stuff too. The Conners hits some, but still. 

I need to go back to my Tamiflu delirium. This makes no sense. You came out with no pragmatics scores, no narrative language scores, no standardized tools for ASD and mental health, no expressive/receptive language testing, nothing. 

Edited January 24, 2019 by PeterPan

[MrsRobinson]

4 minutes ago, PeterPan said:

Did he detail the scores he got with the ADOS? Yes, it was a good one to run, given the profile. How old is she? It should not be taken as the only thing to answer the ASD question. Did the psych seriously spend only 3 hours total with her? In one sitting?

No he did not. The email I got today said only this about the ADOS:

Her ADOS-2 score was low and she does not appear to be on the Autism spectrum. She was able to converse about a number of topics and does not show rigidity or an obsessive manner and exhibits social reciprocity.

She is 10. 

She actually was only testing for 1 hour. I was expecting at least 3 hours but it ended up only being one. I said to him that we were prepared for more extensive testing today and he said he had everything he needed and would send me the report. Here we are 8 months later with this "report." 

[PeterPan]

The ADOS should be interpreted in the larger context of developmental history, clinical observations after enough hours with the client, other standardized tools, etc. 

Clearly this psych was pretty cursory. if your insurance will cover SLP evals, I would go that route and find an SLP who does quite a bit wth language. You could have narrative language testing, the CELF Metalinguistics, a tool for pragmatics like the SLDT, the TOPS (test of problem solving), etc. All this is stuff an SLP can do it and it would yield you actionable data.

Did the IQ testing show anything noteworth discrepancies? Did he even do a tool for pragmatics or is he just making assumptions?

He seems to be clueless about gifted kids and girls. One hour. Mercy

[MrsRobinson]

I'm not sure what the IQ showed, really. Her IQ was Above Average with verbal comprehension Very High. 

Her lowest scores were noticeably lower when scanning her chart results. Fluid Reasoning 58th%ile and Processing Speed 37th%ile. But those are still average scores. 

If he did a tool for pragmatics, that was not discussed or in the email report. What is that exactly? 

[Lecka]

ADHD impulsive can be related to the social issues you mentioned.  There is overlap in what would be helpful for autism.  Social Thinking is a popular website.  I have seen ADHD medication help a classmate of my daughter’s socially, who was impulsive.  

Pragmatics has to do with social skills and conversation skills.  I don’t know the exact definition.  It is a category of speech therapy.  

 

[Storygirl]

3 hours ago, MrsRobinson said:

I'm not sure what the IQ showed, really. Her IQ was Above Average with verbal comprehension Very High. 

Her lowest scores were noticeably lower when scanning her chart results. Fluid Reasoning 58th%ile and Processing Speed 37th%ile. But those are still average scores. 

If he did a tool for pragmatics, that was not discussed or in the email report. What is that exactly? 

I'm a little confused about the score reporting, because the WART does not sound like an IQ test, but an achievement test. However, your description of these scores shows that IQ was run. DId the psych run it? It may have been a test called WISC.

Even if the nonverbal (fluid reasoning and processing speed would be in the nonverbal category, as would visual spatial) scores are within the average range, if the raw test score is twenty points lower than the verbal scores, it is statistically significant and could point toward a nonverbal learning disorder diagnosis.

NVLD is not in the DSM and is not always diagnosed, but there is a specific learning profile that corresponds to lower nonverbal scores and high verbal scores, and it includes difficulty with math, social cues, and also typically reading comprehension,. Also typical is difficulty with fine motor and other visual spatial and motor skills. It can resemble the part of the Autism spectrum formerly called Asperger's. So, yes, NVLD is like autism but is not always autism; but it sometimes is. Clear?? LOL

I am not in any position to diagnose your daughter, of course, but I am suggesting that it is something for you to research and consider. Since some psychs will not diagnose it (and the school would not, either), it's something that could apply to your daughter but may not have been mentioned to you.

I agree that his one hour assessment is ridiculous. You can't adequately test for anything challenging in that time frame.

I'm glad they are sending a report. I have to expect it will have more detail than you got so far. Many psychs have parents in for a face to face follow up, by the way. It seems standard, actually. I'm afraid you got a dud and hope you can eventually get better help elsewhere.

Pragmatics is important when social cues are lacking, so it's poor work that he did not run tests for that.

[MrsRobinson]

3 hours ago, Lecka said:

ADHD impulsive can be related to the social issues you mentioned.   

 

I agree. Everyone around here associates ADHD with poor behavior and an inability to calm down. 

But I'm looking at her clobber Great Granny with a full body weight hug while her much younger brothers (that are typical wrestle/ play fighting boys) are very gentle with Great Granny and thinking that's demonstrating impulsiveness and a lack of understanding.

And to further this isolated example, when I mention to her that she can't do that, she asks "why not?" Totally clueless. I tell her to think about why she shouldn't attack hug the elderly and she doesn't have an actual answer for that. She says "I want to show them how much I love them and how happy I am to see them." Anything less than an attack hug (to anyone) is us suppressing her. She just doesn't understand why people wouldn't appreciate a hug. (But its not a hug. She's big enough now, she knocks me off balance.)

And we have to go through this discussion every time we are going to see friends/ family (which is at least once a week). If we don't, she forgets and clobbers everyone. 

[Lecka]

https://www.verywellmind.com/how-to-improve-social-skills-in-children-with-adhd-20727

I just found this from googling.  It mentions “maintaining personal space.”  That can be bumping into people.

And reminding ahead of time is a great strategy!

Edit:  I totally agree about looking into NVLD!

Also — a thought I have — to some extent maybe you got a “paperwork review,” and he didn’t add much to the school report.  The school report sounds good.  Edit again:  except really he sounds pretty incompetent to the extent the person at school made a comment!

He did do an ADOS and he ruled out autism, but there was something he saw that caused him to choose to give the ADOS in the first place.  So that could mean — and NVLD profile.... a missed diagnosis of autism in a girl.... or it IS social issues related to ADHD impulsive.  The truth is — in many ways, there is not much practical difference.  You want to work on social skills issues in any case.  Sure it matters in ways, but it also can really not matter.

 

Edited January 24, 2019 by Lecka

[MrsRobinson]

30 minutes ago, Storygirl said:

I'm a little confused about the score reporting, because the WART does not sound like an IQ test, but an achievement test. However, your description of these scores shows that IQ was run. DId the psych run it? It may have been a test called WISC.

Even if the nonverbal (fluid reasoning and processing speed would be in the nonverbal category, as would visual spatial) scores are within the average range, if the raw test score is twenty points lower than the verbal scores, it is statistically significant and could point toward a nonverbal learning disorder diagnosis.NVLD is not in the DSM and is not always diagnosed, but there is a specific learning profile that corresponds to lower nonverbal scores and high verbal scores, and it includes difficulty with math, social cues, and also typically reading comprehension,. Also typical is difficulty with fine motor and other visual spatial and motor skills. It can resemble the part of the Autism spectrum formerly called Asperger's. So, yes, NVLD is like autism but is not always autism; but it sometimes is. Clear?? LOL

The psych sent us to the school district for an IQ. We did that. The WISC. The testing proctor that did it said she thought it was odd the psych didn't want an achievement test to really know where she needs help. She offered to administer one the next day. So we went back to her for that, which was the WRAT (Wide Range Achievement Test). 

I forwarded the results and report of both to the psych. 

On the IQ (WISC), Her non verbal scores are 27 and 32 points lower than her verbal scores! 😨

[Storygirl]

2 hours ago, MrsRobinson said:

On the IQ (WISC), Her non verbal scores are 27 and 32 points lower than her verbal scores! 😨

A school psych is not necessarily going to highlight that difference. First, because you mentioned that the lower score was still in the average range. The schools tend to see all scores in the average range as acceptable. Even private psychs can do this (I had a neuropsych tell me it was "good" that my other non-NVLD son had one score that was 12th percentile, when obviously, that is NOT good! But it falls in the statistical range of low average, which psychs consider still average.) However, those differences can cause definite functional challenges.

Now a good neuropsych report should highlight that score gap, at least in mention. A really good NP will tell you what it means and what intervention is needed, even if they do not label it a NVLD profile. It doesn't sound like your NP is intending to explain how that verbal-nonverbal gap can affect someone, but perhaps the written report will be more complete than expected (always room for hope, right?)

In the meantime, you can read about nonverbal learning disorder, sometimes abbreviated NLD instead of NVLD online. Because it is not officially recognized as a disorder by the DSM, NVLD has not been studied and written about in the same way that other conditions have, but you can still find out a lot by googling and reading widely about it.

[Storygirl]

DS14 is not touchy feely and tends to be stiff when hugged, so he does not rush hug anyone. But we definitely have to talk and talk about appropriate social behavior, and he does not understand the WHY of things, even when explained to him. Now that he is a teen, we have a lot of interesting discussions explaining things that most other boys will get intuitively. And then we have them again. And again.

Just a tip -- People who are very verbal and have trouble with nonverbal cues need things explained to them verbally and directly. They may not understand suggestion or inference, so they can't draw a line from "someone is old" to "they are more likely to be unstable and fall over." You have to spell it out for them and probably over and over and over.

Also, some people struggle with perspective taking (also called theory of mind), where they are not able to put themselves into someone else's position and see things from their view. They only see things from their view. So they don't grasp why things would be different for others than themselves. If big hugs are great for them, they think that they must be great for everyone. And they just won't get it.

We have found that we often just have to set a rule and require following the rule, even if understanding is not all the way there. And then we keep working on developing the understanding over time. So, for example, we might have a "don't hug great-granny" rule, and then each time we see her, we go over the rule and the WHY. The expectation then is that the rule will be followed, even if the why is not completely understood yet. Because there are safety issues, and there are personal and social boundaries that DS needs to know and respect, even if he doesn't really understand them intuitively.  It's exhausting, frankly, but it's how it goes.

[Storygirl]

13 hours ago, MrsRobinson said:

No he did not. The email I got today said only this about the ADOS:

Her ADOS-2 score was low and she does not appear to be on the Autism spectrum. She was able to converse about a number of topics and does not show rigidity or an obsessive manner and exhibits social reciprocity.

She is 10. 

She actually was only testing for 1 hour. I was expecting at least 3 hours but it ended up only being one. I said to him that we were prepared for more extensive testing today and he said he had everything he needed and would send me the report. Here we are 8 months later with this "report." 

I am curious about whether you agree with the bolded. Because as parents, we see a wide range of behaviors over an extended period of time, and he only saw her for an hour. As PeterPan said, a good evaluator will take a lot of input from the parents and add that to their observations.

It's possible that autism is not an issue for her. And it's also possible that he missed it, because that happens more often with girls. The ADOS is considered the gold standard for autism diagnosis, but, as I understand it, it is subjective and based on the evaluators observations just during that time of the testing.

Just something for you to ponder. She may very well be one of those individuals who has trouble with nonverbal communication but is not autistic.

I find it interesting, because we are always considering having DS go through a full autism evaluation (he was screened by the NP, who thought not, but he never had the ADOS or a complete consideration just of the ASD issue). And I would say that DS has trouble with all of the areas listed in bold. Yet most people who interact with him would not necessarily see those aspects of him in a short period of time.

I assume, by the way that by social reciprocity, he means the back and forth of conversation. You said she is very verbal. Is she able to show interest in and discuss things that are important to others but are not important to her? Or does she only talk about what she wants to talk about?

 

[MrsRobinson]

14 hours ago, PeterPan said:

It sounds like the school was actually offering you some help. Why are you poo-pooing their writing? SOME schools are actually doing good, evidence-based writing intervention and some have testing and interventions that might benefit her. It might be better to dig into whether the school is actually doing good intervention before deciding. I would ask them if they have an ADOS-trained team. Like just for your trivia, ask. If they do and if they ran further testing, they could spend the time to do things properly.

Really, you have so many questions unanswered here. Sounds like you got a hatchet job, just doesn't even make sense. No family history, no ADI-R or other mental health forms AT ALL??? Nothing??? I mean, nuts, if ASD is on the table they should be screening other stuff too. The Conners hits some, but still. 

I need to go back to my Tamiflu delirium. This makes no sense. You came out with no pragmatics scores, no narrative language scores, no standardized tools for ASD and mental health, no expressive/receptive language testing, nothing. 

Ok so I'm going back through everything from the beginning to look up things one at a time, makes notes, and decide what to do next. 

I think I wasn't super clear in my first post that the testing proctor with the district did administer the IQ the first day then recommended we come back the next day for the WRAT, which we did. So that's how we got those scores. Sorry @Storygirl if that was confusing in my op. 

To address what I've quoted here, I completely missed this last night. I think I was getting tired. 😴 

1. I'm not poo pooing the school's writing at all. The proctor's reports, conversations, and emails were extremely helpful. At the time she relayed that dd would be in a remedial math class if she were enrolled in ps. We decided against ps at the time because we were expecting a clearer picture with the np. It seemed premature to put her in ps. 

If you are referring to the writing program sent home with us by the OT, they were very helpful. We did both levels start to finish and they have helped her very much. 

All the things you listed at the end... no we didn't get any of that, I have no idea what any of those things are! Lol! 

I have on my to do list to call the district to ask about an ADOS trained team.

I'm sorry you are sick! That is so sweet and truly above and beyond for you to help in this way when you are really sick! 

[MrsRobinson]

 

 

49 minutes ago, Storygirl said:

we definitely have to talk and talk about appropriate social behavior, and he does not understand the WHY of things, even when explained to him. Now that he is a teen, we have a lot of interesting discussions explaining things that most other boys will get intuitively. And then we have them again. And again.

Just a tip -- People who are very verbal and have trouble with nonverbal cues need things explained to them verbally and directly. They may not understand suggestion or inference, so they can't draw a line from "someone is old" to "they are more likely to be unstable and fall over." You have to spell it out for them and probably over and over and over.

Also, some people struggle with perspective taking (also called theory of mind), where they are not able to put themselves into someone else's position and see things from their view. They only see things from their view. So they don't grasp why things would be different for others than themselves. If big hugs are great for them, they think that they must be great for everyone. And they just won't get it.

We have found that we often just have to set a rule and require following the rule, even if understanding is not all the way there. And then we keep working on developing the understanding over time. So, for example, we might have a "don't hug great-granny" rule, and then each time we see her, we go over the rule and the WHY. The expectation then is that the rule will be followed, even if the why is not completely understood yet. Because there are safety issues, and there are personal and social boundaries that DS needs to know and respect, even if he doesn't really understand them intuitively.  It's exhausting, frankly, but it's how it goes.

This exactly what goes on here. All of it. 

I've been reading about NVLD/NLD and she checks all the boxes except reading comprehension difficulties. 

So if I were to call around for an SLP, do I ask for one that believes in NVLD, or what? 😂 

[MrsRobinson]

 

I do agree with the bold for the most part. She is always "on" when she's around others and is very conversational. She can chat about the weather or whatever in a setting like that with the np. Or her swim instructor or whoever. 

In an open ended setting like a picnic/park day/ field trip/ family dinner she becomes much less back and forth conversational and little to no interest in others. She monoploizes the conversation and gives endless personal details about whatever she's wanting to talk about.

If I give her a look or signal, she stops and says, "WHAT?!" like I'm way out of line and interrupting her. We talk about balanced conversations, others want to participate, not just listen to you the whole time. We talk about that people don't want or need a lot of personal details when relaying a story. These are areas we have made little to no progress in.

We can discuss them in the car on the way to the thing, she can tell back to us what the expectations are and why, and still loudly talk constantly the whole event. Later, when we talk about it, she'll say she held back so many other things she wanted to say but didn't so she thought she did great! 

35 minutes ago, Storygirl said:

I am curious about whether you agree with the bolded. Because as parents, we see a wide range of behaviors over an extended period of time, and he only saw her for an hour. As PeterPan said, a good evaluator will take a lot of input from the parents and add that to their observations.

I assume, by the way that by social reciprocity, he means the back and forth of conversation. You said she is very verbal. Is she able to show interest in and discuss things that are important to others but are not important to her? Or does she only talk about what she wants to talk about?

 

 

[Lecka]

Here is my honest opinion.....

You may have a decision to face right now about ADHD medication.  I have no idea what your current feelings are, and -- nobody *wants* to do ADHD medication.  But if you are at a point to consider it, and if it is recommended (I don't even know if it has been recommended for her by anyone), this is what I have seen with quite a few people:  

1.  Major, major improvement with ADHD medication.  Still some need for strategies, still some need for talking about social skills, etc, greater than for other kids, but primarily these kids are doing usual things and parents are primarily dealing with medication management.  

2.  Some improvement with ADHD medication.  Good enough that they are worth doing.  There is still a great need for strategies, extra focus on social skills, etc, but more progress is made because of kids being able to perform better while on ADHD medication.  But it's really not the same kind of solution as it is for some parents.  

3.  The parents *hope* for improvement from ADHD medication, but there just isn't much.  It's not worth doing.  Maybe practitioners said things to them like "it's worth a try" more than "I think this will help."  But it doesn't help much.  

It is just going to be your child that determines which of these groups you are in.  *You* might prefer to be in one group or another, but at a certain point, it's not really about parenting philosophy or a parenting preference.  

ADHD medication is not even recommended for my son (or my other son).  It just is what it is for us, but I have seen way too many people who just didn't want to do medication, and then, with medication, their kids just did not have too many additional needs (in the scheme of things).  

Even math -- you never know, some kids improve in academics because they learn better by paying better attention to their lessons, not rushing off in one direction and failing to consider other solutions (which would be impulsive), etc.  They just start to learn better.  For other kids -- this is NOT seen.  But for some kids it is.  

But it's probably a top question for you.

A lot of PeterPan's thoughts are based around the possibility of autism.  It is a possibility, but at this point, technically, it HAS been ruled out by the ADOS.  It's true, the ADOS can give false negatives for girls with autism.  But -- I think it's not necessarily going to be something that anything comes from, especially as far as getting a diagnosis.  Though it is possible.  

With NVLD, it is something where the primary benefit may be that you find out more information.  If you read about NVLD and it fits your daughter, it is helpful.  

But right now you have got an ADHD impulsive diagnosis.  What can you do about that?  Do you accept it?  Might you accept it with some more time and information?  Maybe you can ask the school psychologist if that seems consistent to him/her with what he/she saw?  That is a fair thing to ask, as far as I know.  Maybe you can ask more about the Conners.  I'm assuming the Conners was one of the things to show ADHD impulsive.  Did you feel out a parent section?  If so, do you know what things you filled out that might have contributed to this psychologist saying "ADHD impulsive"?  

I think this is probably your starting place.  

It may be that it doesn't end up fitting or being the right answer. 

But it's very possible that this is the answer, too.  

Were you expecting paperwork to come back with ADHD on it *at all*?  

If not ----- this is probably a real shock!  

But I think it's probably the main thing of note from the psychologist report.  

You can try to find out more about ADHD, you can make a follow-up appointment with your pediatrician and tell him/her about this diagnosis, decide if you want to do a med trial, decide who you will want to oversee a med trial..... These are the kinds of things that would be first-ish steps.

Something you might want to do is take "baseline data." This is how your daughter acts with no medication.  How often is she bumping into people?   What other behavior do you see that is on lists about ADHD impulsive?  Make a list of those things, and keep track of how much she does it.  

Then you can have a good idea if you do a med trial, because it can help keep from remembering mainly good days or bad days, etc.  

Something I personally did -- my older son had an OT I liked, and she looked at my son's Conners (iirc) rating scale.  She was able to look at his scores and tell me ---- the same thing as the school psychologist had said, but it meant more coming from someone I trusted.  She had been to a lot of IEP meetings (we saw her privately but she also worked in the school system) and she had seen a lot of Conners reports, and so that meant a lot to me.  If you are still seeing anybody like this or maybe even might be able to email them -- it can be nice to talk to someone you like and that actually knows your child, even if it is not going to be someone with the same expertise.  I will say she talked with me very informally because it is not her specialty and that would be inappropriate, but still she reassured me about what I had already been told.  

[Lecka]

5 minutes ago, MrsRobinson said:

In an open ended setting like a picnic/park day/ field trip/ family dinner she becomes much less back and forth conversational and little to no interest in others. She monoploizes the conversation and gives endless personal details about whatever she's wanting to talk about.

If I give her a look or signal, she stops and says, "WHAT?!" like I'm way out of line and interrupting her. We talk about balanced conversations, others want to participate, not just listen to you the whole time. We talk about that people don't want or need a lot of personal details when relaying a story. These are areas we have made little to no progress in.

We can discuss them in the car on the way to the thing, she can tell back to us what the expectations are and why, and still loudly talk constantly the whole event. Later, when we talk about it, she'll say she held back so many other things she wanted to say but didn't so she thought she did great! 

 

Okay, I'm being simplistic here, but to some extent -- if you try ADHD medication and it helps with this, then that is your situation.  

If you try ADHD medication and it doesn't help with this (whether it helps otherwise or not) then welcome to pragmatic language 😉 These are all major topics in pragmatic language.  Pragmatic language deficits can go along with a lot of things, to include -- you guessed it -- NVLD, ADHD, and autism.  Pragmatic language (I think) includes everything you mention here (I think).  This all has to do with the appropriate social use of language. I think this would all go along with pragmatics -- but I am not 100% sure.

So it may be other things that will fit in more with one or the other thing, where they all have pragmatic language issues in common. 

There is a lot of reason to hope, because there is stuff out there to help, and at the same time, it is nice to know you are already doing a lot of things right as a parent, which it sounds like you are!   

[Lecka]

As far as reading comprehension ----- sometimes you have to really dig in and see if she understands what is going on between characters, or things like that.  Sometimes there is a distinction between reading for factual information, or some other kinds of reading comprehension questions.  This is hard to explain, but if she can answer questions about "why did this character do this?  What is this character feeling?" then that is different from being able to tell events that happened.  If you are interested in this kind of thing, it is a big topic.  If she honestly just has great reading comprehension of all kinds, can narrate beautifully, can make predictions, can pick up on inferences, etc., etc, then ----- that is helpful to know.  

Edited:  Math issues, and the score differences between verbal and non-verbal -- those are reasons to look into NVLD.  But to say reading comprehension is good -- that is kind-of "need more information."  Because -- some kids have overall good reading comprehension, and some kids have areas of strength in reading comprehension, and some areas of weakness.   

Edited January 24, 2019 by Lecka

[PeterPan]

59 minutes ago, MrsRobinson said:

I have on my to do list to call the district to ask about an ADOS trained team.

When you ask, I would pose it as part of the larger question about what other testing they would do. They're only going to do testing that has evidence. I'm still sick/tired here and not thinking straight. They ran achievement along with the IQ? 

See, the stupid thing is usually a psych wants to see some of the testing being done because it gives him more data beyond the actual test. That's why this whole thing is screwy. What psych says oh yeah farm it out to the ps psych??? Those tests are done SO quickly and sometimes are wildly discrepant from what the private psych will get. Now sometimes the ps psych does a great job, and sometimes it's not. Your ps seems more sane here than the private psych, which is totally crazy.

Anyways, what you might do is look at what the ps did, see what evidence you have for further testing, THEN ask what the ps could do when you have your list of what areas you think need further examination.

[PeterPan]

8 hours ago, MrsRobinson said:

I'm not sure what the IQ showed, really. Her IQ was Above Average with verbal comprehension Very High. 

Her lowest scores were noticeably lower when scanning her chart results. Fluid Reasoning 58th%ile and Processing Speed 37th%ile. But those are still average scores. 

If he did a tool for pragmatics, that was not discussed or in the email report. What is that exactly? 

What tool did he run for pragmatics? Some are almost worthless, like the pragmatics portion of the CELF.

Discrepancy is significant if there are 2 SD (standard deviations). So having a very high verbal with the other 2SD lower is discrepant and actually a huge red flag. That processing speed is probably discrepant from GAI or overall IQ and would get her accommodations. Did he happen to do any word retrieval or language? That fluid reasoning I don't know much about but others have dealt with it. Again, if it's discrepant (2SD) then it will affect how she FUNCTIONS, even if it's not absolutely low. 

 

[Storygirl]

Oh, I totally agree with Lecka about considering ADHD meds. Some people do not want to do it. I did not want to do it. But by the time DS 14 was 9/10, things came go a head, and we decided to try. It made an amazing difference for him. Honestly, he is like two different people when on and off the meds.

Even medicated, his social differences remain, in that he still does not grasp all of the dynamics. But DS is better able to interact with others in a positive manner when he is in his meds and listen to what others say. This is huge for him, because he also is oppositional and argumentative, and when he is less impulsive, he is able to reign that in. That affect will not apply to kids who are not oppositional, of course. My point is just that it is a dramatic, dramatic difference for him when he is on meds.

Impulsivity and inattention can definitely affect the understanding of and use of social behavior. Because they miss cues.

 

[PeterPan]

10 hours ago, MrsRobinson said:

The psych sent us to the school district for an IQ. We did that. The WISC. The testing proctor that did it said she thought it was odd the psych didn't want an achievement test to really know where she needs help. She offered to administer one the next day. So we went back to her for that, which was the WRAT (Wide Range Achievement Test). 

I forwarded the results and report of both to the psych. 

On the IQ (WISC), Her non verbal scores are 27 and 32 points lower than her verbal scores! 😨

Well one, your psych is an idiot. Or else he had been planning to do the achievement himself, but that's still stupid. Usually IQ and achievement tests are paired by the publisher so they do the sets that match. It was very nice of your ps to do this properly.

Yes, that is more than 2SD of discrepancy. Yes she is presenting with scores that go NVLD, but it's not in the DSM. So now, my friend, you enter the netherland and figure out if your dc's NVLD has enough ticking of boxes to move over to ASD, which is in the DSM. My understanding is most of the time it will. 

6 hours ago, MrsRobinson said:

I've been reading about NVLD/NLD and she checks all the boxes except reading comprehension difficulties. 

So if I were to call around for an SLP, do I ask for one that believes in NVLD, or what? 😂 

You don't have to "believe" in anything. You have difficulties that show up on testing and tools or you don't. Diagnoses are the terms the DSM, etc. make up trying to clump those terms into patterns. The DSM has this big bugaboo about things not overlapping, so one kid has to have LOTS OF LABELS to cover lots of areas unless he happens to end up with a label that explains it globally. So some psychs won't diagnose separate SLDs when there's ASD, because ASD is considered to affect academics, etc. But if the academic issues go WAY BEYOND what the ASD would cause, then they'll still diagnose the SLDs, yes. 

Anyways, just stay concrete. To me, the label thing is almost a red herring, because you still have to deal with the child and identify everything going on. The stronger label would open more doors, get more funding, and get more accommodations, things she'll probably need. It's things you think about. 

So you're looking, like I said at the very beginning of the thread, for an SLP who does a lot with expressive language and autism. You want to know if they have the tests you're looking for. They'll see plenty of NVLD profile people walking in the door, sure. The issues to treat, if there are pragmatics or narrative language or metalinguistics or whatever, are going to be the exact same intervention whether her DSM label is ADHD or ASD or NVLD or whatever. It won't matter. Same materials, same intervention, because what matters is what they're intervening on, not the stupid, idiotic, fallible, varying with the psych you saw, DSM label. That's why you have to test more, because you still don't know what's causing stuff.

She's not doing enough reading yet beyond her ability to mask for you to know if she'll have reading comprehension issues. My ds with ASD2 who won't pick up a book has been able to pass a 6th grade reading test for years. Tells you nothing about his real issues and how he really functions in life and where he really needs intervention. It's probably there, so the real issue is to get the testing to hone in and show it. The really really bright kids are hard on these, because they can cover so much. They can use the models in the test and fake their way through it. You have to use better tests that don't provide models. You have to bust through their ability to mask. Sometimes the difficulties will be nuanced, subtle, like parts missing. They may have pieced together a lot of it and it's just PARTS of the skill that are missing.

6 hours ago, MrsRobinson said:

In an open ended setting like a picnic/park day/ field trip/ family dinner she becomes much less back and forth conversational and little to no interest in others. She monoploizes the conversation and gives endless personal details about whatever she's wanting to talk about.

If I give her a look or signal, she stops and says, "WHAT?!" like I'm way out of line and interrupting her. We talk about balanced conversations, others want to participate, not just listen to you the whole time. We talk about that people don't want or need a lot of personal details when relaying a story. These are areas we have made little to no progress in.

This is where detailed SLP testing would be really handy. There is a lot of nuance in the things they look for in conversation. There's your chit chat level, repair, on and on. They'll have terms. What you're saying here is VERY SIGNIFICANT and if you say it to the right SLP, they'll care. The trick is to take the time to get the right SLP. 

6 hours ago, MrsRobinson said:

Later, when we talk about it, she'll say she held back so many other things she wanted to say but didn't so she thought she did great! 

She sounds awesome! I'll bet she's very fun to be with and very bright. 

Ok, this is my two cents. When you teach upfront what you think the skills should be, you get an artificial output, a rule-following approach. So then she's going to be stiff and non-intuitive and not finding it natural because she's not getting the natural feedback that would tell her what to do next. Joint attention is one of those things. That's the RDI stuff I was talking about. It might do more for her than you imagine. Also these kids do really well in drama classes. Like sign her up and keep her in them!! 

Lecka is mentioning meds. They don't decide what your total sum of diagnoses is, but they CAN help someone receive the good instruction they're being given. So she naturally is missing things (lack of joint attention, poor pragmatics, etc.) and her mind is here and there breaking attention and her processing speed is disablingly slow for her. She's going to miss a lot, not process well (in a socially expected or prosocial way) what she does take in, and be really slow about it anyway. So meds would just make one prong of that go better. You still need to work on ALL the angles. Actually the meds would bump the attention and the processing speed. They can make a really nice difference. They just don't change that she's also going to need social thinking intervention.

6 hours ago, Lecka said:

right now you have got an ADHD impulsive diagnosis.

I'm loopy on meds so I don't even remember reading that, lol. Yeah, if the ADHD has been diagnosed, it's merely a matter of going to the ped and jumping through the ped's hoops. The psych diagnosis is not going to get you meds but it lets you know to have that discussion. There is data showing that people who receive behavioral intervention FIRST are more happy with their outcomes than people who do meds first or even do them concurrently. On a practical level, it doesn't matter. If you find an SLP can do something like Michelle Garcia Winner's dynamic assessment (which would hit a lot of the areas we've discussed and give you tons of great info and not be stuck on the DSM) then you could begin intervention with them. It takes 2-3 months to complete all the appts to get ADHD meds with our ped, so while you're working on the meds you're doing the SLP stuff and beginning interventions concurrently. 

If you want, take it a step further and look for a behaviorist who specializes in teens, sure. I don't know if anyone has brought up the longterm prognosis stuff, but social skills are her biggest determiner of outcome. A behaviorist who specializes in teens can hit social thinking, language, and get really practical with problem solving. See who you can find. You're looking for the right person, not the label. If you've been doing it and it hasn't sunk in, then let someone else, kwim? Or let several someone else's. Personally, I like mixtures like:

-SLP-led social skills groups 

-counseling with a PhD psych or similarly licensed and qualified person

-1:1 instruction with a behaviorist who can help them generalize to the community and help problem solve life and help you have a coherent game plan

The whole ADHD meds will help is such a funny thing. ADHD merges into the spectrum, so it's not like makes it go away. It's more like where are they when we do that and what remains? And that takes data and are we making the data or just assuming? Gets interesting. That's a philosophical rabbit trail.

On the math, did you have a sense it was an issue? And is it conceptual or more like word problems and related to language?

Edited January 25, 2019 by PeterPan

[PeterPan]

That "always on" presentation can also be a sign of high methyls, anxiety, etc. It's a really different presentation from that really common under-methylator ASD profile. That can have anxiety too, but it's just very different. You might find it interesting to run genetics. 

You have meds and you have personal awareness. My ds is at a place where if we get some progress with meds, he still can't choose for himself. It's why bringing in behavioral interventions, etc. is really important, because you want to harness that IQ and ability to understand and self-advocate. You want to engage her with this and have that person going ok where were we before, where does this get us. She may do it for herself. She may really like how she is on meds. My dd's ACT scores went up 50%. 

Most people who do meds wish they had done them earlier. I think as long as you view is as part of a total plan (more testing, more supports, working on self-regulation), then it's a tool in their toolbox. 

You might talk with her or your OT about interoception. It would be really interesting to find out how much she's self-monitoring. The interoception assessment wouldn't take long with her, given how verbal she is. It runs under $25 from AAPC and you could administer it yourself and then give the results to whatever OT you decided to use to do the intervention if intervention was needed.

[Storygirl]

1 hour ago, PeterPan said:

Ok, this is my two cents. When you teach upfront what you think the skills should be, you get an artificial output, a rule-following approach. So then she's going to be stiff and non-intuitive and not finding it natural because she's not getting the natural feedback that would tell her what to do next.

 

This is where NVLD may veer from autism, however, because people with NVLD don't read nonverbal cues, which can be up to 65% of communication. People with NVLD need to be told directly and verbally, not shown visually or by example or led to intuit things. Multiple modes of input are always helpful, so you can show an example PLUS give verbal instruction. But without being told, many people with NVLD won't SEE the skills being used.

 

 

[Storygirl]

Here's an academic example. The science classes at our middle school are tons of fun. The kids are learning by building roller coaster models and other projects. It's project based learning. DS does't learn the concepts from building something or watching something roll down the hill. He has to be told what is happening and the science behind it. He doesn't make those connections without the verbal piece.

Science in general is hard, though, with a visual spatial disability. And NVLD is not only a visual spatial disability but also has the added bonus of difficulty with conceptual understanding and connecting ideas together. Which is pretty much the basis of science.

So DS14 gets through science by memorizing the study materials before tests. Because he can remember the WORDS even when he doesn't really grasp all of the concepts.

[Storygirl]

By the way, the math disability related to the NVLD profile is generally a conceptual disability as well. The kids usually do well with early math and memorizing math facts, and the disability only becomes apparent in upper elementary or later.

For reading comprehension, it's the same. The early reading skills can come relatively easily. But as you hit more complex material, the comprehension issues can become more obvious. These are things that DS14 had trouble with in fifth grade (I remember fifth grade specifically, because it was his first year in a brick and mortar school), when he was 11. Understanding figurative language, character motivations, flashbacks or other plot devices that were not straightforward, inferring anything when something is suggested in the text but not stated outright. Most of these elements are not found in a more complex form in books that are below the third grade reading level. He was stuck at that third grade level for awhile. We really worked hard with him on comprehension skills and strategies.

Rote memory is a strength, however. So he could tell the names of the characters, the events that happened, etc. It's the overall meaning of the stories that he would miss. He would remember what the character looked like and that she was chewing gum and the silly thing she said to her friend. But he couldn't tell you why it was important or make connections. It's like the story was a group of random facts instead of a cohesive whole. This kind of reading gap is sometimes called "seeing the trees but not the forest," or knowing the details but missing the main idea.

So he might be able to pass a standardized comprehension test, because the answers are multiple choice, and he will recognize details he saw in the text. But if you have a discussion about the text, the holes are more evident.

It's possible that someone can have NVLD and not have reading comprehension difficulties. It's not like there is a rule that you have to have all of the problems. However, the reading comprehension goes along with social difficulties and pragmatics, so it's really common. It's possible that you will see it rear it's head in the coming years.

By the way, you asked about pragmatic language. You can google that, as well, and you will find some good descriptions online. Better than what I could type out for you. Basically, it's the communication that is not directly spoken but is meant by the speaker, and there are multiple aspects to it that can be missed by someone who has trouble with pragmatics.

[PeterPan]

1 hour ago, Storygirl said:

This is where NVLD may veer from autism, however, because people with NVLD don't read nonverbal cues, which can be up to 65% of communication.

ASD involves deficits in non-verbal communication as well and having deficits in non-verbal communication is part of the federal definition of autism. Whether it's in the current DSM5 criteria, I don't remember. My point was that if you teach the non-verbal skills like joint attention (eg. SLPs demanding eye contact), the result will be very robotic. You want to work on the development of non-verbal communication skills in more natural, inductive ways that help the dc discover why he would engage in the non-verbal communication and begin to do it naturally.

You could actually have layers of discussion about non-verbals, because you have your non-verbals for communication (joint attention, body language, etc.) and then you have the issue of learning style and input and the question of how that person *learns* things. There probably are more, but I'm not thinking too hard today.

[Storygirl]

But don't some people with autism have high nonverbal skills on IQ tests? Which is why they are stereotyped as logical, nerdy, mathy, computer scientist types?

I agree that the nonverbal category covers many things, and when we say "nonverbals" we may not be discussing entirely the same things. Those with NVLD have nonverbal deficits that those who don't have NVLD do not. I think a chunk of that is the visual spatial disability, where conceptual understanding does not come through seeing things or mechanically doing things.

The pragmatic nonverbal struggles are shared by those with autism, but for those with NVLD, there are more layers.

Edit: By "mechanically doing" I do not mean doing like a robot. I mean being able think about mechanics -- assembling things, seeing how things work, etc.

Edited January 25, 2019 by Storygirl

[PeterPan]

nt

Edited January 25, 2019 by PeterPan

[PeterPan]

nt

Edited January 25, 2019 by PeterPan

[Storygirl]

Okay, we will have to agree to disagree. It sounds as if you are saying that autism and NVLD are one and the same. I can't agree. There are specific deficits for NVLD that I am talking about.

[PeterPan]

https://www.aane.org/aspergers-disorder-non-verbal-learning-disabilities-two-disorders-related/  Yale study found 80% of kids with Aspergers (DSM4) fit the criteria for NVLD. 

Edited January 25, 2019 by PeterPan

[MrsRobinson]

Okay, so I'm reading everything here and making a list. I'm reading up on the terms, pragmatics, interroception, all of them, and reading the links. 

I'll be back tomorrow with more questions, I am sure! 😨 

Thank you all for your insights, examples, thoughts... All of it! 🤗

[PeterPan]

Don't try to learn in a night what takes people years to get straight. 

[Lecka]

Peter Pan, the same article says that there are no studies from the other direction, for how many people with NVLD might also have AD (Aspergers), and then says “most likely the children with the most severe NVLD also have AD.” 

So saying a study says that 80% of those with AD also have NVLD, is not making any estimate about how many with NVLD also have AD.

Also we don’t know what criteria for AD was used for the study (at least from the link).  A lot of times people will cherrypick a group to study based on their personal preference for who should have Aspergers and who shouldn’t, but not everyone has the same opinion and it makes it hard to know exactly what a study like this is really saying.  

What I mean is — they can choose who fits Aspergers or High-Functioning Autism according to what they are looking for in their result (which may be based on their conceptualization of Aspergers).  

This is a reason the DSM 5 went to Autism Spectrum Disorder.  

I still think terms that aren’t in DSM 5, like Aspergers and NVLD, are really helpful for parents, though, and I think it’s good to look for information that way.  If something fits then it is helpful!!!!!!!!!!  

I have also thought in the past, that some diagnoses are just to avoid an autism diagnosis for people who do not want an autism diagnosis.  Or — for people who favor a very narrow, exclusive definition of autism (which is not what is found in DSM 5).  I have thought this in the past about NVLD and Sensory Processing Disorder.  

But I have seen stuff more recently that has made me change my mind, to think these are not synonymous with autism.  This article even seems to say that maybe it is only the most severe side of NVLD that overlaps with Aspergers.  

Also, as far as ADHD being a spectrum, I don’t think that means that ADHD is always close to autism.  I think it means that there is a side of the ADHD spectrum that gets very close to autism.  I think there is also a part of the ADHD spectrum that is nowhere near autism.  

 

[Storygirl]

I agree, Lecka.

Also, for every article one might read that suggests NVLD really is a form of autism and thus does not deserve it's own diagnosis or name, you can find one that supports the other side, which believes that NVLD is separate from ASD. There are people who actively lobby for NVLD to be included in the DSM as a distinct diagnosis. And there are people who vehemently argue that it is not necessary to identify NVLD separately from ASD. There are two camps of belief on this issue.

I think of NVLD as a spectrum, ranging from mild to severe. Those who are more severely affected are more likely to cross over into an autism diagnosis. But there are still those with the NVLD IQ profile who are not autistic.

[Lecka]

Mrs. Robinson, on the behavioral intervention side, which can mean anything from just using parenting strategies to help with any noticeable issue, to how to handle bad behavior.....

Behavior is a tricky word because it doesn’t always mean “bad behavior,” sometimes it just means — what you are doing with your kids.  For example — giving a reminder about not bumping people can be considered a “behavioral intervention.”

Anyway — for some basics of this, you can look at Alan Kazdin.  He has a basic “behavioral intervention” approach, if you want to just see what the idea is.  

For example, this book, if it is at your library, you could read the introduction probably and have an idea. 

https://www.amazon.com/Everyday-Parenting-Toolkit-Alan-Kazdin/dp/0544227824/ref=nodl_

It’s pretty broad but it could let you get an idea of the kinds of things that might be meant by “behavioral intervention.”  

For a progression of least-serious to most-serious, something like looking at this book would be least-serious.  Or maybe you can google and find stuff on the Internet.

A next step might be looking for something more specific to ADHD, that would be more intense than something for a general parent.  This might mean getting into a token economy (where you are giving tokens for a child to earn a reward).  Anything where kids get stickers and then a reward after so many stickers, is a kind of token economy.  This is the kind of thing that might be a behavioral intervention.  

A next step might be you and/or your child seeing a counselor.  

A next step might be a “behavior therapist.”  If you have aggressive or destructive behavior, that is at a fairly high level of concern, then you start at a more serious place, it’s appropriate to start with a behavior therapist.  

On the other hand, if an example of a behavior issue is bumping people when not reminded not to ——— that is not serious enough to see a behavior therapist.  That would be more appropriate to start with reading a book, maybe seeing a counselor (there could be other reasons it could be desirable to see a counselor, or not), reading about ADHD, trying more parenting suggestions or strategies, etc.  Which — a lot are things a lot of parents already do.  Like — you specifically didn’t need to see a counselor to try giving a reminder about bumping.  Maybe for another person, they are on top of things in other areas, but it just didn’t occur to them to try giving a reminder for that issue, and they get that advice from a counselor.  

We had a behavior therapist and I got a lot of help with “pre-corrects,” a fancy word for reminding a child of how you want them to act, ahead of time.  It’s a great strategy and I got a lot of advice for it.