CTOPP Questions

[Terabith]

Looking back over some test results from a few months ago....

 

Elision  scaled score of 4 (poor)

Blending words   scaled score of 14 (above average)

Memory for digits scaled score of 5 (poor)

Rapid digit naming scaled score of 8 (average)

nonword repetition scaled score of 8 (average)

Rapid letter naming scaled score of 9 (average)

 

The overall results were "average," but these don't look like average scores to me.  They look like a significantly above average score for blending, significantly below average scores in elision and digit memory, and barely average scores for rapid naming and nonword repetition.  The speech therapist noted that scores of 8-12 were average. 

 

My google fu is failing me.  The blending seems to indicate she has decent phonological processing.  The barely average rapid naming seems to indicate some problems with processing speed, which makes sense.  But I don't know what to make of the elision and memory for digits, although I have to say the digit memory correlates highly with what I see in real life (nonexistent memory for anything that isn't contextualized.  Give her context, though, and she's a ROCK STAR.).  This doesn't look like typical dyslexia to me. 

 

What does it look like to you guys?

 

They also did a CASL.  I'll throw out those scores, too, just for fun. 

 

Antonyms 130

Grammatical Morphemes 106

Sentence Comprehension 113

Nonliteral Language 123

Pragmatic Judgment 115

 

Frankly, the pragmatics surprises me, because while she copes in real life, it still seems off somehow.  The child hissed and growled at a man at church who startled her!  But....she's never had problems with idioms.

 

They also did a Test of Language Competence, which was more surprising.  Results were "widely varied" but overall "average."

 

Ambiguous Sentences  11

Listening Comprehension (Inferences) 8

Oral Expression 5 (Apparently difficulty here was coping with limitations placed on verbalizations she has to provide)

Figurative Language 16

[Crimson Wife]

I think you want someone to run an IQ test because there are some "red flags" for working memory deficits. Elision on the CTOPP is not just a phonological awareness task but also a memory task since the child has to keep several "chunks" of information in his/her mind while manipulating them.

 

What is "flat" minus the /l/ ?

 

The child has to remember "flat", segment it, and then manipulate the segments. If the child has a working memory deficit and can only keep 3 "chunks" in his/her WM when the age expectation is 6 chunks, then there's no way he/she is going to answer correctly even if the PA is fine.

[Crimson Wife]

CogMed is expensive and there is controversy over whether the training generalizes, but that might prove really helpful. You might want to start with the cheaper "Jungle Memory" to see if that helps at all before trying CogMed.

[Lecka]

I think it is not unknown for kids who have trouble with pragmatics in real life to score well on tests. (Edit: I mean I have seen this mentioned on the Social Thinking website.)

 

Your observations should be taken into consideration.

Edited August 7, 2017 by Lecka

[Terabith]

She's had several IQ tests run, again with conflicting results, but in general, working memory is a big problem.  They noted that she could consistently remember 3 items but not really more than that.  She's 12. 

 

WISC-IV

Verbal Comprehension 119
Vocabulary 15

Similarities 14

Comprehension 11

 

Perceptual Reasoning 137

Block Design 15

Picture Concepts 15

Matrix Reasoning 18

 

Working Memory 104

Digit Span (forward) 11

Letter-Number Sequencing 11

 

Processing Speed 83

Symbol Search 8

Coding 6

 

Woodcock Johnson Cognitive

 

General Intellectual Ability 88

   Oral vocabulary 112

   Number series 90

   verbal attention 86

   Letter-Pattern Matching 82

   Phonological Processing 82

   Story Recall 112

   Visualization 99

Short Term Working Memory 70

   Verbal Attention 86

   Numbers Reversed 64

 

Cognitive Processing Speed 95

   Letter-Pattern Matching 82

   Pair Cancellation 108

 

Number Facility 69

   Numbers Reversed 64

   Number Pattern Matching 81

 

Perceptual Speed 79

   Letter Pattern Matching 82

   Number Pattern Matching 81

 

Cognitive Efficiency 70

   Visual Matching 82

   Numbers Reversed 64

 

Kaufman Brief Intelligence Test

Verbal 139

Nonverbal 100

Composite 123

 

Peabody Picture Vocabulary Test 154 (apparently she literally got every question on the test correct)

[PeterPan]

The CASL has lots of subtests options, and the SLP can pick several and generate a composite score. I was about to ask about Inferences when I saw it was hit in your other section.

 

I agree with Crimson that you're seeing the effects of low working memory, at the very least. You already have had IQ and know she's stunningly gifted, yes? Like not just MG, yes? So it makes any discrepancies more compelling. While they aren't really going to use that discrepancy for speech to write IEP goals, there's just an obvious point where they have to be able to comprehend and express to do the LEVEL of work their brains are driving them to do. 

 

So, to me, to have inferences at 8, while they're not in a range where they would give you IEP goals (at least 1.5 SD below the mean), they're still a relative weakness. When you pair them with the pragmatics issues you see in some real life and the social thinking issues and the low processing speed and maybe some low word retrieval, you would get a kid who would misunderstand social situations, process it slowly, and respond with a grunt or hiss or something physical rather than using their words and complete sentences.

 

I've been reading some research lately on whether social thinking in autism is verbally mediated. In other words, does it MATTER or make a DIFFERENCE if we sit there practicing social thinking and inferences and whatnot aloud... And the answer in the study was YES. 

 

So I would consider doing some work on inferences and maybe seeing if you have more scores on other areas that affect reading comprehension (compare/contrast, cause effect, summarizing), and maybe work on all those. You can hit social with inferencing too, so then you're hitting your three major areas (inferencing, social, and expressive language) all in one activity. Super Duper and Linguisystems both have good stuff for this.

 

I think you could also stand to work on working memory and RAN/RAS. I would, just a dab, on the RAN/RAS, simply because it has room to go up. Takes just a few minutes, and you could throw it in for a month and then drop it. I would do letters, numbers, shapes, colors, a variety of things. I've got some pages someone gave me with distractors, so like colored shapes, and one time through you read for the colors and the other time through you read for the shapes. That kind of thing. You can do that with arrows, same gig. You can do it with a metronome after she gets better at doing them for speed.

 

I'm just saying that would give you a bump in one area to balance out weaknesses in other areas. 

 

Ok, now I'm seeing that Oral Expression 5. That's, um, significant. Didn't they run any expressive language areas on the CASL? There are tons of subsections. How is she doing in writing? Are you finding issues in real life with her original language? On those scaled scores usually the SD (standard deviation) is 3, meaning you're now past 1.5 SD. That means a ps SLP would give you IEP goals for it. You're not failing the whole test, but they didn't run a test where she would fail the overall. If you ran something showing expressive language, narrative language, she'd probably bomb quite gloriously.

 

So is she getting speech therapy now and has goals? What are you wanting to make happen? She's in a school, yes? What are they suggesting? The challenge is she's not little anymore. She might not want to spend time with you and work, even though it's stuff you could work on. But that's kind of in a pickle range. That's where it would be really nice to have not only therapy but something carried across. I'm surprised it's not showing up in her writing, etc. Or is it?

[PeterPan]

The CASL pragmatics is really interesting. The scores correlate well (with reliability, blah blah, statistical junk) to other pragmatic tests like the Social Language Development Test, but it's administered in a dramatically different way. The SLDT I haven't seen administered, but my ds has had it a couple times. Or, I take that back, I was in the room the last time. The SLDT has subsections (google to see) and puts them through a variety of scenarios with picture prompts. The tester writes down everything that is said. It kicks out a breakdown in each area for theory of mind, which is really helpful data. You should see if your testing has those sections, because you might find one low, one high, whatever. Oh, you didn't have it.

 

Anyways, the CASL pragmatics is totally different. The tester still writes everything down, and it still takes a long time to administer. It doesn't have picture prompts like the SLDT, and my memory is that it takes longer. It's either about the same length of time as the SLDT or longer. It's definitely not shorter. But the interesting thing is it's one setup the entire way, and they read through the list asking things like "You come to the counter at a fast food restaurant. You want to order a hamburger. What do you say?" Well the dc, at this point, can say ANYTHING. They could be non-compliant and silly. They might grunt. They might say something really off the wall. It's really complex, in a way, because it's expressive language and social thinking and EVERYTHING, all in one, very real life scenario. 

 

When I heard the CASL pragmatics administered, I spent the whole time going wow, that's stuff my ds really says! Like it was really him and really how he is with people. With the SLDT, I never really had that sense. 

 

So I'm saying that it isn't giving you backgrounds on how she's using social inferencing, perspective taking, etc. the way a more detailed theory of mind test does, but that score is reflecting the frustration you really feel in real life. I have no doubt she really does respond to situations with grunts and snorts and incomplete sentences and other abrupt, unexpected behaviors!

 

Her grammar is a little low. They'll get all pissy and say it doesn't matter. Fine, but *I* say a kid with a gifted IQ can't express gifted thoughts when they don't have the language, both receptive and expressive, to do what their brains are trying to do. And to me, that's where you just kind of bonus it. Like you sneak in some speech therapy materials to bump her grammar processing and you use them to work on her expressive language. Sorry if that doesn't make sense. So like we have a flip and fold workbook on wh-questions. Does can answer them adequately, so then the question is can he ASK them. That's expressive language. Can he formulate his OWN questions from a situations. And then you get into social thinking instruction and realize asking questions is a way we teach conversation skills. So we go wow, he doesn't converse with people! And then we piece together that he doesn't converse with people because HE CAN'T ASK QUESTIONS.

 

What do you want to do with the results? What do you want to make better or tackle or make happen? What would make a big difference in her life?

Edited August 7, 2017 by OhElizabeth

[Terabith]

She's in a school but she doesn't get speech therapy.  When you TALK to her, the oral expression stuff is not at all evident.  She's got an off the charts vocabulary and she is verbally fluent and cogent.  When she was little, there was definitely a "little professor" quality to her speech, but not because of lack of intonation, just because you didn't expect to hear such a young kid being so clear and precise.  The psychologist who got that score was like, "This can't be right, because it just doesn't mesh with the way she presents."  That oral expression subtest seemed to be a result of rigidity.  It was the kind of test where you had to describe something but couldn't say certain words.   And that threw her for a loop.  She gets frustrated and shuts down.  But when she TALKS, she's golden. 

 

Her writing....well, I don't know.  It's hard to get past her spelling being so bad.  Her reading comprehension is 98th percentile, but she spells on a first grade level still.  So she hasn't done a ton of writing, but if you can get past the spelling, the content is not bad.  Her school doesn't do a very good job with writing instruction, imo, but what she has to say is pretty decent.  She plays Dungeons and Dragons something like nine hours a week, which is a role playing, story telling game, and she's awesome. 

 

Yeah, a big issue is that she REALLY doesn't want to work for me anymore.  The anxiety and low frustration tolerance are problematic, but it's like pulling teeth for me to get her to get her to do anything.  I'd really have to farm out any therapy work.

[PeterPan]

Has she had an OT eval for retained reflexes? My ds got a language bump as we got his reflexes integrated. It may have been coincidental, but it was VERY noticeable. 

 

I'm piecing together her cognitive efficiency scores (which would imply midline and OT issues) and the language.

[PeterPan]

Look at that discrepancy. Somebody calculated a GIA on her of 88, but her vocabulary is 154. That's why she feels the way she does to you. I would assume she's in that 139-154 range, NOT that 88 range, mercy. That regular IQ has to be held back by her expressive language issues at this point. 

 

Does she have any strengths, anything you can work to? The problem is, she's at an age where kids start to buck. Anything you want to work on has to be carefully chosen. Reflexes integrate in just a couple months, so they're not bad to make happen. If you can get a social thinking SLP who will do that and work on the expressive language and work on some writing (where I'm assuming it's showing up), that would be golden. You could try to do that twice a week for a year and get the teachers to carry it over at school.

Edited August 7, 2017 by OhElizabeth

[Terabith]

Yeah, there's a ton of discrepancy from IQ test to IQ test and from subtest to subtest.  My gut feeling is that the inherent IQ is super high.  I remember when she was like four years old, I was taking this crazy MENSA test for adults, and she came in to see what I was doing and wanted to do it, too.  I had gotten a pretty darn high score (and from my SAT/ ACT/ GRE scores, I'm not slacker myself), but she totally blew me out of the water, at four, as I read the test to her.  I had no idea how she was getting the right answers to a ton of questions I had no idea about myself.  My guess is that her accurate IQ is somewhere in that 140 range.  But, the processing speed and memory issues are significant. 

 

I like the idea of finding someone to look at reflexes.  That would be very interesting.  How do  you find someone who can do that?  The waiting lists for OT around here are literally years long and they won't even put you on them without significant issues.  Social thinking would be good, too.  At some level, I'm not sure how to tell what matters and how much.  Her reading comprehension is awesome, though she's not so great at decoding unknown words.  But she makes do.  I think the memory is really what's behind her inability to spell.  She just can't remember what words are supposed to look like, and at 12, I'm starting to think we need to be focusing on accommodations more than remediation, though I haven't given up on remediation totally.  Math is an issue, too, but I'm less confident there about what particularly the issues are. 

 

She was born bucking, and age hasn't improved it.  She's been aware since age 3 or 4 that things are harder for her than they are for other people, and the injustice of it all pisses  her off at a very primal level.  Coupled with the anxiety, getting her to try or put forth effort into anything is worse than pulling teeth.  She likes to read and listen to stories.  She LOVES role playing games.  She's really very creative, and excels at story telling.  Her memory for anything that's in story form is uncanny.  She doesn't have the dyslexia diagnosis, although the phonological processing is less than IQ expected.  She does have a dx for written expression, because of difficulties with spelling and punctuation.  Her school has not served her well in math, and her scores there have been dropping steadily, which concerns me, but not sure what I can do about it.  She's never going to be able to remember math facts, I don't think, but when we were homeschooling, I did enough conceptual work to enable her to figure out stuff.  The school doesn't really do that.  What she needs work on is applications....figuring out when you do what operation in a given problem.  I'm less worried about her mastering long division than knowing when she needs to divide, you know?   

[PeterPan]

After multiple OTs, we finally ended up with a PT who was good with reflexes. She likes the Pyramid of Potential stuff. You could use the list of the reflexes and google them and look on youtube.

 

You might distinguish working memory and visual memory as you're thinking. Does she ever try visualization (spelling the word you see in your mind)? 

 

Math uses language, and she has those pockets of low language. I think that's how it shows up, like you're saying, that she can't read the word problem and tell what to do with it. So it's language and math converging.

[Terabith]

What struck me when they were doing the CASL pragmatics (I was watching) was that they would ask her questions like, "You get to the head of the line at McDonald's and want to order a hamburger.  What do you say?" was that she was answering the way you SHOULD answer, what you're supposed to do, but not how she really does in real life, if that makes any sense.  She knows what the right thing to say is, and frankly, the situations the CASL gave were all situations that were pretty scripted situations, things that you practice with kids, where there's a pretty clear social contract.  She knows what to say, but in real life, the anxiety gets in the way.  Eventually, she probably would have come out with what she said in the evaluation, "I'd like a hamburger with cheese, please."  But in real life, she'd probably try to get someone else to order for her, maybe even to the point of not ordering.  There'd be some hyperventilating going on, too. 

 

She has no problems with conversation.  Your comments about wh questions are interesting, because when my oldest was little, she got speech for early intervention, and then at 3, 3.5 I noticed that she wasn't able to ask questions at all.  She couldn't really do conversation because there was no questions.  I kept waiting for that why stage to hit and it never did.  So I got her back into speech for a few months, but honestly, it wasn't the speech therapist that taught her how to ask questions; it was her little sister, who at 18 months had wh questions DOWN.  That oral expression score is really misleading, I think, because I've NEVER seen her have any difficulty expressing herself verbally.  But that subtest apparently had scenarios where you have to explain about toothbrushes without using the words "teeth" or "bristles."  That sort of thing utterly threw her for a loop.  She could talk on her own like a grad student, but place limitations on what she was able to say and she froze.  My theory is that she is using so much cognitive energy trying to remember "what words am I not allowed to say" that she had none left over for communicative intent. 

 

The grammar is a little low.  I've noticed in recent years that her grammar has gotten a bit sloppy.  And that's probably on me.  I haven't been as careful about when I should use nominative versus objective pronouns and who vrs whom and the like.  I know the right way to do it, but when she was five, it sounded a little weird and pretentious for her to say things like, "It is I" or "To whom did you want me to give this note?" or "It's not fair; I have fewer animal crackers than Anna does."  Kids were making fun of her, you know?  So I started modeling that it was okay to use colloquial grammar versus completely proper grammar, and she just picked that up and forgot the right way to do it.  I'd say running her through a good grammar program would be good, but the memory issues make that pretty ineffective.  We'd have to all go back to speaking properly at all times, which probably we should do anyway. 

[kbutton]

I wonder how she would do on a TOPS-2 test? It's a test of language problem solving and very interesting. My son did okay, but he has some really low areas as well. He's all over the map with his scores on things, but the ups and downs are more clear-cut with non-verbal being off the chart. However, his cognitive efficiency is very low. He had a different WJ test (achievement), and his fluency scores are not very good. His WM and processing speed are "normal" with a gifted IQ that ranges from moderately gifted to maxed out the test, depending on the category. 

 

Did you know that the WJ tests are mapped to CHC theory of intelligence categories? If you can google a list of the definitions of each kind of intelligence, then you can google presentations (by Kevin McGrew, I think) that show which WJ subtests correlate to what kinds of intelligence. It's interesting to see the categories that go into cognitive proficiency and memory. The hard part is that there are multiple WJ tests (achievement, cognitive, oral, etc.), but if you have the patient to sift a bit, you might see some specific things in the definitions that make sense about your kiddo.

 

My son seems to take a really big hit in the Reading Recall on the WJ achievement section. It tests Meaningful Memory, which is "the ability to note, retain, and recall information (set of items or ideas) where there is a meaningful relation between the bits of information, the information comprises a meaningful story or connected discourse, or the information relates to existing contents of memory."

 

Anyway, if you google Kevin McGrew Cattell-Horn-Carroll Broad and Narrow Cognitive Ability Definitions, you might find some interesting stuff that correlates to her cognitive efficiency scores.

[Terabith]

Besides the Woodcock Johnson test not aligning with what we see of her in daily life, nor correlating at all with any of the other testing she's had done (WISC, Stanford Binet, Differential Ability Scales) from age 3-10, I also don't think it's really accurate because she really didn't have very good rapport with the tester.  I think a lot of the subtests have validity, but not all of them.  When she had the Children's Memory Scales done years ago, her story recall was in the 99.9th percentile, and the neuropsych was absolutely floored because 30 minutes later, she was able to repeat almost every story near word perfectly.  And I totally believe that, because she remembers stories and things with context.  On the other hand, her scores for random word pairs and faces on that same test were significantly below normal, which again, correlates with what we see in daily life.  But on the Woodcock Johnson, her story recall was something like 112.  Not shabby, but nowhere's near either what we see in daily life or with other testing.  So I believe some things, the general patterns of strengths and weaknesses (repeating numbers?  forget about it.  and backwards???  NEVER EVER gonna happen), but I just can't get behind a GAI of 88.  On the Peabody vocabulary, she ceilinged the test, was over 155, but on the Woodcock Johnson, it was under 115?  That's a pretty big discrepancy.  But....she didn't like the psychologist at all.  She was compliant, but I don't think it was always her absolutely best effort, you know?  She has pretty major working memory issues.  Her processing speed sucks.  And maybe it's just that all the subtests on Woodcock Johnson are things she struggles with.  That's definitely possible.  But it's frustrating.  That psychologist really didn't see her strengths, although she said she "presents as far more intelligent than her scores would suggest."  When she was little, I couldn't get anyone to see her weaknesses.  Maybe I'm just bitter because that psychologist kept telling me I was in denial about her nonverbal learning disability, but refused to take into account her 137+ scores on the nonverbal section of the WISC a few years previously.  The kid's got learning disabilities.  I've known that since she was 3.5.  But I really think a score that high would rule it out.  She's scored really high on nonverbal tests several times over the years.  I don't think it's a fluke.  I don't think I'm in denial about it.  Frankly, I think autism is a heck of a lot more likely than nonverbal learning disability.  Besides which, it's not in the DSM, so it's an annoying diagnosis, especially when it REALLY DOESN'T FIT THE KID.  Yes, she's got some quirky social stuff.  Yes, she's not great at math.  But her issues with math really seem to boil down to language (how do I know what operation to do?) and memory (how do I remember all the steps of long division?).  It's not a problem with abstraction.  The kid's been thinking abstractly since toddlerhood.  But she wouldn't listen to me.  That was the label she'd decided to fix to her.  I dunno.  Maybe I am in denial.

[PeterPan]

Now see that's really fascinating, because that's EXACTLY what the pragmatics testing is trying to tease out! And look what you just said. She gets the social contract. She has enough social thinking that she knows what people are SUPPOSED to say, but due to anxiety she might shut down and not say it. Do you think her anxiety affected her answers on the expressive language testing? 

 

My ds doesn't even get that there's something that is expected for people to say and that he's not saying it. He just doesn't even have it inside, the right answer. So he says something really off the wall and odd. It's a different level of social thinking, when you look at the social communication profiles on socialthinking.com It's why we're very confident he has ASD1, in spite of people sometimes wondering if we're sure. Nope, we're sure. When you really dig in, he doesn't get it.

 

Oh that's really interesting! So it does sound like the anxiety and stress locked her up and would explain that expressive language score. I definitely think you're right to use your head and piece together details like that. 

 

I think you're overthinking the grammar. You were there when they ran it, so you probably heard them. It's usually really basic stuff like antecedents of pronouns, understanding verb tenses, etc., and usually all that is required is that they point to the picture that correctly shows what was happening in the sentence the tester read. The dc doesn't typically need to generate the original sentence and it's not checking fine points of grammar. If it were, the tester would have to write everything down the dc is saying, which would be tedious to score. It's usually just pointing to the correct answer where missing the grammar (verb tense, pronoun referent, plural endings, etc) distinguishes the pictures.

 

Kbutton, those CHC categories sound interesting! Another to learn in our spare time! You should start a thread and get it going! :D

 

Back to Terabith. The backwards digit spans are for testing how hard she's working to get there. So maybe she has an ok score but is working crazy, crazy hard to do it, well it shows up when she has to do it backwards. 

 

It really sounds like her anxiety plays a significant part in her scores, causing her to shut down or interact less, which makes the results less valid. You might do some CBT for the anxiety and retest at a later point with someone she's more comfortable with, maybe the person doing the CBT so she already has that relationship.

 

You might look at the Social Communication Profiles from the ST people. 

 

Socialthinking - Articles  That's the link. The profiles are considered fixed from age 8 on. So she might improve and grow within her category, relative to herself, but where she are *in relation to her peers* is pretty fixed. I could launch into my hate DSM tirade, but I won't. I get what you're saying, so maybe try the social thinking profiles and see if anything there fits.

[Terabith]

I've been in correspondence with someone who is trained in the social thinking here in town.  I've been trying to get her in to do an eval on her, but she's crazy backed up. 

 

It's interesting.  I first started wondering about the autism question back when she turned two.  At her second birthday party, she froze up and then later said, straight up to me, "Mommy, I don't LIKE other children.  I prefer to play alone."  She was atypical even then.  Didn't sleep.  Refused outright to interact with other kids.  Early intervention did an eval, said "Atypical, but frankly, her scores are off the charts high.  Could be giftedness.  Could be autism.  But we really don't have any services that are likely to help her."  It's not like she needed speech or OT.  They suggested waiting till she turned 3, having her re-evaled, and putting her in preschool.  So we did, after moving cross country at 2.5.  And at just turned 3, they were able to actually do some pretty indepth testing.  Stanford Binet IQ, a bunch of language and fine and gross motor scores, and she scored really high on everything except adaptive functioning, which was pretty borderline.  They saw issues, but again, didn't qualify for services, so we put her in private preschool.  But meanwhile, she quit learning and developing, more or less completely, when we moved.  By that point, I really thought we were looking at autism.  But when we put her on meds for anxiety at just turned five, the autism symptoms improved DRAMATICALLY.  She started interacting socially.  She started learning again.  She was still quirky, but the difference was pretty profound.  She also had the ADOS done at five, and the psychologist really expected her to score clearly in the high functioning category, but she didn't.  She showed insight into why her sister might not want to play with her (she gets mad because I sneak into her room and mess up her dollhouse), spontaneously offered the psychologist some of the goldfish he gave her during the snack, etc.  He was surprised, because she scored a zero on the ADOS (absolutely no autistic symptoms).  But again, she liked him, and she was one on one with an adult, playing, etc.  At eight, she had another full eval done, and they showed high anxiety and depression, lot of rigidity, very low frustration tolerance, but not autistic, even though they had to stop the testing at one point because she freaked out so much.  So I've always wondered whether the anxiety is the sole driver behind the autistic like symptoms.  That said, the older she gets, the more I think there may be some autism.  Her psychologist who is treating her anxiety went through the DSM and was like, "She clearly meets all these criteria."  And yet......I think she really does have the social thinking and the theory of mind.  She doesn't have a lot of friends at school, but then she says, "But most of the kids are superficial, overly dramatic jerks."  Well, yeah, that's middle school.  So is it autism or is she just introverted, anxious, and refusing to put up with crap?  She plays Dungeons and Dragons a LOT, like ten hours a week, and while it probably meets the level of special interest or obsession, on the other hand, role playing sort of requires some pretty sophisticated social thinking.  What will so and so's character do in this situation?  What should my character do?  How does that help the party?  Is it the way they would really react?  So maybe it's not autism but really introverted anxiety, low tolerance for crap, and the self awareness that she has no memory or processing speed and so she's hyper aware of manipulating the environment so that fact won't be discovered.  There's some sensory issues going on, too, which might be a factor.  When we work with tutors and psychologists, the assumption seems to be that the anxiety is an artifact of the learning disabilities, but I really don't think it is.  While I've been aware of the learning issues from 3 or so (come on, seriously, the child is a frigging genius but she can't remember how OLD she is???  Don't you think that's a little weird?  All the other little girls in her preschool class can write their names, and she is scribbling.  Yes, I know she described evaporation to you and correctly used the word soporific, but don't you think it's a little weird that she doesn't know shapes?), I really think the anxiety came first and while I don't think the anxiety caused the learning issues, I think it was a driver. 

 

In other news, apparently there's a boarding school in Illinois that is EXACTLY for kids like her.  Brehm Preparatory School.  Like, she could be their poster child.  We're going there for the eclipse, and I want a tour, but I don't think boarding school is the right move for her.  Not to mention, how the heck do people get their school systems to pay for that???  Every psychologist has said not to put her in public school, but even if we did, what learning disability is going to drive a school to say, "Let's send this kid to an out of state boarding school?"  I mean, it would be one thing if there were disruptive behaviors, but there aren't, but the school won't even take kids with behaviors.  Yet most of their kids are there because the school systems are paying the bills.  That's blowing my mind.  Almost enough to suggest to my husband that we move, but even if we did, we couldn't pay the tuition even for a day student.  But still..... a school specifically designed for her.  It's crazy tempting.

[Crimson Wife]

  Maybe I'm just bitter because that psychologist kept telling me I was in denial about her nonverbal learning disability, but refused to take into account her 137+ scores on the nonverbal section of the WISC a few years previously.  The kid's got learning disabilities.  I've known that since she was 3.5.  But I really think a score that high would rule it out.  She's scored really high on nonverbal tests several times over the years.  I don't think it's a fluke.  I don't think I'm in denial about it.  

 

NVLD would be high verbal paired with low non-verbal. Those WISC scores on block design, picture concepts, and matrix reasoning you listed would not be showing up in a kid with NVLD. Those are in the gifted range.

 

ASD can definitely cause unreliability in testing and you have my sympathy there :grouphug: :grouphug: :grouphug:  I've sat observing my DD give a blank look in response to a question that I *KNOW* she can answer. Maybe this particular evaluator is using a 2-D drawing stimulus when DD is using to being asked with 3-D objects as stimuli :banghead:

 

[PeterPan]

Socialthinking - Articles

 

You might look at the profiles at this link and compare SASC and WISC and see if either fits her. 

 

They really aren't joking when they say there's a difference in the level of social thinking. Look at the hamburger question from the pragmatics test. Your dd gave an answer that reflected significant social thinking. That would be a pretty common way for SASC or WISC people to answer! My ds gave an off the wall non-answer. He had no clue what the "right" answer was. That's how ESC replies. He's typical autism.

 

It's ok to say it's not autism, kwim? Like just because it's not autism doesn't mean it's not nothing. It just means the DSM is bonfire. Hate the DSM. I totally get it, right there with you.

 

Fwiw, the answer they're giving you is what we were told to, that you do the stuff for anxiety and what's left is the autism. With my ds, we did the stuff for anxiety, and honest to G*d he actually seems MORE autistic. Like you totally wouldn't believe it. A year ago we dickered, like are you sure, this guy says this, this guy says that. Now, after a year of ABA, he's so calm, so peaceful much of the time, that the AUTISM is like full bore obvious. People meet him and they're like oh wow he never talked to me, he met me and then didn't talk to me the next time, didn't look at me, spent the whole time biting you, didn't reply, didn't make eye contact, was flapping around the church, only talks about this ONE THING he's into and is not reciprocal. 

 

So literally, my ds is MORE autistic in public, more clearly autistic to anyone who sees him, now, after a year of interventions that were, according to the ps, for "anxiety." Don't even get me started. His anxiety is down and the autism is left.

 

I don't know, I'm just trying to say it's ok to have peace there. I don't know, but you've certainly pursued it enough. I remember feeling that way with my dd, like why is she having problems with all these little things that are common to people with dyslexia (spelling, word retrieval, blah blah) but not getting a dyslexia diagnosis?? So I identify with that and how long it went on. And I will say, 6th grade was still bad for that internal angst. By 9th, she became more clear to me and it was like oh. Some of it was the comparison, and some was just she came into her own.

 

It *sounds* like she fits SASC or maybe WISC. If you go to a social thinking workshop, they show pictures, tell stores. I think it's important to recognize what skills your dd has intact. Those play into that profile. It doesn't have to be autism to be SOMETHING and to be significant.

 

If you could change ONE THING for her, what would you change?

 

It sounds like your anxiety tools are working pretty well. Do you need more anxiety tools? If her anxiety were a percentage better, would that improve her function and quality of life? If her understanding of social situations were better, would that improve her ability to manage people in situations that are frustrating her?

[PeterPan]

I'm not radically opposed to leaving home. I sent my dd away last semester and left home myself at 16 to go to school. However 6th grade is really young. I think she needs you more than you realize, and I think you underestimate your power to help her. I think she could be at a pivotal age, a pivotal moment, and the scary thing is to figure out what that pivotal thing would be, what key there is, and how to unlock your relationship and her ability to be with the world.

 

On a total side note, that comment about not wanting to live with people was my early sign that ds was very, very different. I think you're right to notice it. She's clearly quite gifted, and she sees so much she's trying to process. It sounds like some books on social thinking might help her immensely. Have you thought about just ordering her books from the ST website? Like anything meant for teens. Just order a pile and let her read them, or read them aloud together. It can be your private time together. 

 

There is nothing more helpful you can do for her than to unlock the world to her through social thinking.

[PeterPan]

Sorry to go on. Does she have to be in that D&D 10 hours a week? Like that's time maybe she's not really discussing and growing in other ways, kwim? It might be disproportionate and affecting her growth. You could consider curbing it.

 

If you asked people, this age you're going into sux anyway. So you've got a hormonal, confused age of transition to deal with anyway, and she's doing the reclusive thing in a D&D group. I think even parents where the dc doesn't have any challenges might consider curtailing that or broadening them or something. It could just be on the table as an option. I mean, is the point of school in your mind to get her away from that? Wouldn't it be cheaper just to trim it while she's at home? To me, just me, one time a week for 3-4 hours ought to be enough. I had friends in high school (school for the gifted, where people were crazy into things) who did it, and that was what they did, a long block once a week. They weren't doing it every day, kwim? You could find a replacement for that time. You could go on some series social thinking journeys with lit, some relationship repair, whatever. 

[Terabith]

Yeah, if I could fix ONE thing, it would be less anxiety/ depression.  We've done meds; we've done therapy, but it still goes in these waves, and it's in a bad patch right now.  I want her to be happy, you know? 

 

Honestly, I look at social situations, and I think, really, she ISN'T the problem.  11 and 12 year old kids are kinda jerks.  I really think they're the problem, not her.  Not all of them, clearly.  And hissing and growling is a problem, but she really only does that if you come up and startle the heck out of her, ya know? 

 

Looking at the social thinking website, I haven't been able to tell the difference between SASC and WISC.  She's definitely one or the other. 

 

If I could fix another thing, I think it would be the memory.  I don't know if she'll ever be able to go to college, with the spelling/ writing and the math and the memory, but I really think the reason we can't fix the spelling (or the math) is because she just doesn't have any memory.  And even more concerning, I worry that between the two things (no memory and the social skills), I'm really not sure she's going to be able to hold down a job that pays a living wage.  She's competent at daily life stuff:  cooking, sewing, etc.  But she still has trouble remembering to brush her teeth.  Will she be capable of remembering to pay bills?  Take the trash to the curb on trash day?  She's crazy smart, but I don't know for sure that she'll be able to live alone.  But even if she can't, I'd like her to be happy.  That's what we all want, isn't it?  And you can't be happy if you're scared all the time.  I really don't care if she uses a pacifier for the rest of her life. 

[Terabith]

I'm not taking the D&D away from her.  It's the ONE thing in life she really loves.  Like, it's what makes her happy, gives her joy, feeds her.  And it's a heck of a lot more productive than watching videos, which is what she gravitates towards at home.  She doesn't want to do much.  And when she's playing D&D, she's got a social circle of other kids.  They're genuine friends.  And it really does take serious social thinking to role play (and not piss off the other people in your group).  It's story telling, and improve theater, and math from all the dice rolls and writing out your character's background and research and...  There's a school in Denmark that does its entire curriculum through role playing, and I can see how you really could do that, with the right scenarios.  But D&D is the opposite of reclusive.  It's social and interactive.  School gets her out of the house, but D&D gets her interacting.  My husband was a major gamer, and actually, the adult who runs her groups gamed with Mike when he was in high school.  They game Tuesdays and Saturdays for 3.5 hours each, and then she games with her sister, grandmother, and another kid for another few hours Saturday night.  It's not every day.

 

6th grade is WAY too young to send her away.  It would be 9th grade before we even thought about it, even if it was a financial possibility, which it really isn't.  And even then I'd be more tempted to move there and send her as a day student.  My best friend does live in that town though, so she would have a "local family." But no, the thought of the school is that there's an entire school of KIDS LIKE HER.  Peers.  And teachers who focus on kids like her.  But it wouldn't be even considered if they didn't offer role playing as an activity. 

Edited August 8, 2017 by Terabith

[PeterPan]

Do you think for her the D&D is a way of processing the world or using some of that social thinking analysis energy? There's a role playing game for social that she'd be a good candidate for. ST/MGW was selling it, but it may be gone now. You could google. It's specifically for kids who like fantasy worlds and dragons. :)  RYUU--The Game by Joel Shaul and Rebecca Klaw. www.ryuuworld.com see if that works. I'm just typing it off the box. I picked it up at the workshop and haven't tried it yet. Feedback was that it was very thorough, hit a lot of great stuff, but that therapists maybe wished for a better tm, like it really took work to expand it, use the cards, turn it into something. But if you just want into it like hey, let's see...

[Terabith]

Oh, wow, that looks AWESOME.  Yes, dragons are her "special interest."  That could be really fun!

 

[Lecka]

I am encouraging my 12-year-old son in his interest in starting a D and D group..... it would

be an excellent social opportunity for him.

 

It is really having a moment right now because of Stranger Things.

 

I think in general it sounds like a good social thing to me.

 

If a particular kid was not experiencing it that way, I can see that, too, but in general I think it would be very positive.

 

What I like about it is you schedule a time every week (I think). It seems like it will take a lot of pressure off my son to have to try to schedule and set up times to get together with friends. That is hard for him and I don't blame him.

[PeterPan]

There are also some LotR fan writing groups online she could look for... My dd got into fan fiction writing about that age, and she so was NOT a writer before.

[Terabith]

Our library system runs the D&D groups. It's awesome! They have adult volunteers and kids from 10-20. It's really amazing.

[Lecka]

My son will be probably trying to run his own group with some help from my husband, but I am thinking Friday afternoon so my husband won't be home.

 

If they end up messing around more than actually playing it wouldn't surprise me, and I don't know how much interest there really is from other kids.

 

He thinks he has a couple of kids to ask.

 

I would love a library program for him.

 

Last year he had a structured way to play Minecraft in a group two times a week in the afternoon, and that was really nice for him, but he would really rather do D and D and thinks a couple of the same kids from Minecraft would be interested.

[Terabith]

Yeah, apparently our town's D&D library program is the largest in the country.  They have over 30 kids every Tuesday, and 10-15 at sessions on Thursday and Saturdays at different branches.