Tongue twisted: wwyd?

[Innisfree]

If your young teen had several words that they consistently pronounced incorrectly, plus a very minor speech impediment, would you continue to encourage help after they reject it firmly?

As an example, think of per-na-ment instead of permanent. She also has a bit of a lateral lisp. Basically, she ends up sounding much younger than she is. But she no longer looks like a young child, and her speech is becoming more obviously inappropriate.

When she was much younger, she was evaluated by a school SLP, who said she did not qualify for speech therapy at school but gave us materials to use at home. At the time she had not yet received her ASD diagnosis. The speech practice led to terrible meltdowns, and we dropped it. Similar story once we did get the diagnosis, only then the SLP said in front of dd that the speech problem was minor enough that we did not need to do anything unless dd wanted to. 

Dd is adamant that she does not care. But every time we see a professional for any sort of evaluation, they bring it up. I was just listening as dd chatted with a friend in the back seat, and several times during the twenty minute ride, the friend corrected dd's word choice or pronunciation. Dd still didn't seem to care. But-- am I being negligent if I let these things persist? They will color how people view her. But insisting on speech therapy would mean a big, ongoing battle. So, wwyd?

[Jean in Newcastle]

If she doesn't care, I think that I would let it go.  I really choose my battles with my Aspie especially if it is something that requires his participation for it to even be effective.

[Innisfree]

Thanks, Jean. That's been my position so far. I just periodically wonder if I'm doing the right thing. She does not have a good understanding of how things like this are perceived, as I'm sure you understand.

[ktgrok]

How is her reading? Mixing up the order of sounds like that is a typical thing in dyslexia, and definitely a red flag for it. 

[PeterPan]

That type of error is often a working memory, low processing speed, and touch of phonological processing kind of thing. Is her reading and spelling coming along acceptably? I would do games for working memory (Ticket to Ride, card games, etc.), consider meds if there is co-morbid ADHD, and do a touch of explicit phonics if she has some phonological processing issues.

The irony is, the ASD diagnosis puts on the table mild motor planning issues (praxis) being behind it. The only way to track down if that's the issue is to go to a PROMPT therapist and get something like the VMPAC. You could do that just to clear the air, sure. A ps is probably not trained in PROMPT and certainly not certified. So if you want to clear the air and make yourself feel better, that would be a way. You could just call and talk with the therapist and see if there are any other red flags that would pop up as you talk with them. "Lateral lisp" might be interpreted differently by someone who really knows motor planning and is really qualified to evaluate that. You wouldn't believe the crap stupid answers SLPs not trained in motor planning will say with kids dealing with praxis. It really could be, sure. 

But me personally, as obsessive as I am about speech, I wouldn't push it *beyond* that eval with a PROMPT therapist unless the dc wants it. Then, are you considering doing any language testing like the TNL, the SLDT, or the TOPS to follow up with this potential ASD diagnosis? Those would review language-related issues an SLP could work on. The ps SLP is giving you the blow-off, but a private SLP who specializes in autism could work on those things and throw in a bit for the articulation or motor planning or whatever is going on for bonus, just like 5-10 minutes out of an hour or some strategies, no biggee, kwim? That would be a good path to consider. 

TNL=Test of Narrative Language

CELF Metalinguistics

SLDT=Social Language Development Test

TOPS=Test of Problem Solving

All of those could lead to things an SLP would work on for a kid with ASD. You can also buy the materials and do the work yourself, sure. If the ps didn't run the tests, you don't realize you need to look at those areas.

[Innisfree]

Oy, her reading...

Yes, I think dyslexia is a possibility, but the testing disagreed.

She loves to read, but has had longstanding issues with sounding out unfamiliar multisyllable words. We have spent time and tears on this, but have mostly chosen other hills to die on for now, since she has a large reading vocabulary and does not encounter many unfamiliar words any more.

Early testing showed some phonics skills were very far behind. I worked hard on phonics, and by the time she was tested for dyslexia (CTOPP?) they said her phonemic awareness was too high to fit dyslexia.

Frustration tolerance is part of it. She has very limited patience for slowing down to sound out a word.

[PeterPan]

4 minutes ago, Ktgrok said:

How is her reading? Mixing up the order of sounds like that is a typical thing in dyslexia, and definitely a red flag for it. 

Yes, and not only reading disorder but also a fuzz of APD, just enough to cause the phonological processing glitches. APD is super common in autism. And some of it's pretty straightforward, like screening and doing some Earobics or Hearbuilder or LIPS or SWR. Just a touch of something. Just depends on what is going on behind it. But yeah, phonological issues that aren't quite dyslexia but are still there can be from some auditory processing issues.

The least helpful thing to do is therapy hours with a kid who isn't making progress and isn't finding it useful. In reality, if that particular SLP had kick butt good answers that were getting here somewhere the dc might say yeah, let's do that. But the fact is SLPs are super jack of all trades and treat lots and lots of stuff that they (I'm not being polite or pc here) are not well-trained in. They're being asked to do EVERYTHING, especially if they're a ps SLP, and it's just such a wide field with such a wide range of complex issues that deserve specialization. Even when they try to specialize (and wow have I been places where they try to specialize), you're STILL not necessarily going to get the most kick butt answers. If your dd thinks the therapy isn't worth much, she might be assessing the worth/effectiveness of the THERAPY, not the worth of correcting the problem. Those are two separate issues, and unfortunately therapy *hours* don't equal progress. Correct evals, really identifying the problem, using the best methodology yields good results. Hours do not equal results.

And for a disclaimer, I have personally had my ds with at least 9 SLPs in the last 8 years. Turned down many others by phone. And that doesn't include any of the SLPs for social thinking, only SLPs we tried for motor planning and language issues. For real. Think about it. They aren't even talking about any of her biggest language-related problems now, are they? Ha, just this lisp. Not her narrative language, metalinguistics, nothing really important. Yes the lisp is probably affecting how people perceive her *some* but I'm going to suggest there's more. Get the language testing and see. She might have things going on with her language that, coupled with the lisp, are leading to this perception of baby-ness. If her expressive language skills are years behind her age, that will be a factor. If her sentence structure (trickier to test, we used the SPELT) is simplistic, that will affect how she's being perceived. But the ps is just clearing her for low level fruit like articulation. 

[Innisfree]

Spelling has always been a huge problem. We just finished Apples and Pears, and have moved on to Megawords. I do see progress.

PeterPan, that testing might be useful. I should look into that.

[PeterPan]

4 minutes ago, Innisfree said:

Oy, her reading...

Yes, I think dyslexia is a possibility, but the testing disagreed.

She loves to read, but has had longstanding issues with sounding out unfamiliar multisyllable words. We have spent time and tears on this, but have mostly chosen other hills to die on for now, since she has a large reading vocabulary and does not encounter many unfamiliar words any more.

Early testing showed some phonics skills were very far behind. I worked hard on phonics, and by the time she was tested for dyslexia (CTOPP?) they said her phonemic awareness was too high to fit dyslexia.

Frustration tolerance is part of it. She has very limited patience for slowing down to sound out a word.

So there you go. Frustration tolerance is probably connected to low working memory. The phonological processing is going to return to crap anyway, so I wouldn't belabor it. I would work on the working memory because it can be fun and it's a win win, improving EVERYTHING.

If her CTOPP was low years ago, then she was probably diagnosable. The ps IEP team is only asking what they have to intervene on NOW, what affects her ability to access her education NOW. My ds' IEP team dropped SLD Reading from his new ETR, even though he's still the same human, still has the same genes, the same SLDs. It's just that now his reading is just good enough that he doesn't require specialized instruction in that area to be able to access his education.

How is she with background noise? Ever wondered about APD? I'm not saying it is, just that it's another piece to consider at some point. I just took my dd to Able Kids in CO at age 19. Finally got around to it, lol. 

So yeah, do some games for working memory, and maybe if she hits a tricky word just clap the syllables as you say the word back to her. Not obnoxious like, just informative and move on.

[PeterPan]

3 minutes ago, Innisfree said:

Spelling has always been a huge problem. We just finished Apples and Pears, and have moved on to Megawords. I do see progress.

PeterPan, that testing might be useful. I should look into that.

It was EARTH-SHATTERING with my ds. Mind-boggling. Our state definition of autism includes language, so we spent how long trying to figure out how to qualify ds. I did googlefu, found a ps ETR/IEP where the SLP listed out all the tests she had used, and I was like dude why didn't OUR ps run those tests???????? So I submitted the list to our SLP place, they bought them, and boom we finally got my ds qualified under autism. 

She might be just young enough for the SPELT btw. Well it doens't really matter. My ds failed it, utterly failed it. It has an, I forget the term, but basically instead of a typical bell curve the whole thing is shoved to the side. By this age (your dd's age, my ds' age, anything in the 8-9 range) basically most kids can nail everything on the test, boom boom, boom. So if she did heavy scripting or had any language acquisition issues at all, it can show on this test. Even though my ds is totally verbal, I've been going back through lots of basics with him using speech therapy materials like the SPARC books, which you can find on Linguisystems. Amazing, amazing, amazing, and the work is making PROFOUND differences in how my ds talks. 

So when I'm saying she might seem baby-ish for other reasons, that was where my ds was. I don't know your dd, but that's where my ds was. He just sounds years older now, because he has more sentence variety, more expressive language ability. It might not be just the lisp. Don't assume without testing.

That was your rabbit trail of the day, lol. I've been detailing our ridiculous story on the narrative language thread on LC. 

[ktgrok]

I disagree on not hitting the phonemic awareness, if you can manage it. If she's doing well with reading otherwise it might really help, both with speech and her ability to sound out new words not to mention the spelling. Hearbuilder might be a way to do it without banging your head against a wall, since it is her and the computer versus her and you. Or read up on (or watch videos about it - The Reading League has amazing videos about dyslexia on youtube) phonemic awareness (not the same thing as phonics - it's a subset of phonological awareness) and do some oral games with her just for a few minutes a day. Maybe over breakfast or in the car or whatever. But between the speech issue and the spelling issue and the trouble with multisyllabic words issue I'd definitely do some work on remediating her phoneme awareness if at all possible. It can be cheap and just a few minutes a day. 

[EKS]

Are you sure she has ASD?  What you're describing sounds like a combination of dyslexia and APD.

 

[Innisfree]

22 minutes ago, EKS said:

Are you sure she has ASD?  What you're describing sounds like a combination of dyslexia and APD.

 

Yes, we're sure. I was only asking about the speech part, which is actually pretty common in ASD, so I didn't mention other elements. Multiple evaluations have confirmed ASD. But, like PeterPan said, lots of other issues are often comorbid.

[EKS]

2 minutes ago, Innisfree said:

Yes, we're sure. I was only asking about the speech part, which is actually pretty common in ASD, so I didn't mention other elements. Multiple evaluations have confirmed ASD. But, like PeterPan said, lots of other issues are often comorbid.

The reason I ask (other than dyslexia and APD seems to fit with what you're describing) is that my son, who has dyslexia and APD, was originally diagnosed with ASD (Asperger's then).  There is also some evidence that ASD and dyslexia are opposites in terms of how the brain is structured, which would mean that they couldn't be comorbid.  Here's a link: http://www.ldresources.org/2012/11/dyslexia-and-autism-differing-ends-of-brain-connector-spectrum/

[Innisfree]

1 minute ago, EKS said:

The reason I ask (other than dyslexia and APD seems to fit with what you're describing) is that my son, who has dyslexia and APD, was originally diagnosed with ASD (Asperger's then).  There is also some evidence that ASD and dyslexia are opposites in terms of how the brain is structured, which would mean that they couldn't be comorbid.  Here's a link: http://www.ldresources.org/2012/11/dyslexia-and-autism-differing-ends-of-brain-connector-spectrum/

Hmmm, that's really interesting. Thank you, I'll look into that. 

But wouldn't the CTOPP have shown dyslexia of it were present? Is that not reliable?

[PeterPan]

34 minutes ago, EKS said:

What you're describing sounds like a combination of dyslexia and APD.

 

Strongly agree on doing some screening or thinking on the APD. I've had both my kids in for screenings and just took one for the full eval. I'll take the other when he is compliant enough. Right now, he wouldn't be easy to test possibly and wouldn't be compliant on the filter anyway. But yeah, at some point I'll take him. Talking with the audiologist there was enough to make me conclude that.

8 minutes ago, Innisfree said:

Yes, we're sure. I was only asking about the speech part, which is actually pretty common in ASD, so I didn't mention other elements. Multiple evaluations have confirmed ASD. But, like PeterPan said, lots of other issues are often comorbid.

Yeah, don't be bashful on saying SLDs plus ASD. Now they'll give IEP goals for academics when ASD is the disabling condition and not call it an SLD. But if what people are saying is oh don't say dyslexia if there's ASD because the Sainted Eides ran some MRIs, well frankly that's getting getting outdated considering we finally can run GENETICS and demonstrate they can be comorbid issues.

That whole thing makes me wag my head. I'm really trying not to rant here. There are at least 12 known genes for autism and the majority show up on 23andme. There are 21 or 83 genes for autism, depending on what site you're looking at, and many many of them get run by 23andme. If you have enough time, it's easy peasy to demonstrate both are occurring. Or do the SPARK study to confirm the ASD genetics and then run 23andme for the dyslexia. My ds only has 1 gene of the 12. I think that's why he's not severe. But it's still an ISSUE. And what's interesting, just as a total side note, is that each of the 12 genes involved in dyslexia affects a different portion of the process. So it might be that you'd find the gene(s) she flags with explain the effect on her speech. It would be interesting to see. Like if you've got $69 lying around and are feeling geeky, it would be interesting to do.

[PeterPan]

11 minutes ago, EKS said:

The reason I ask (other than dyslexia and APD seems to fit with what you're describing) is that my son, who has dyslexia and APD, was originally diagnosed with ASD (Asperger's then).  There is also some evidence that ASD and dyslexia are opposites in terms of how the brain is structured, which would mean that they couldn't be comorbid.  Here's a link: http://www.ldresources.org/2012/11/dyslexia-and-autism-differing-ends-of-brain-connector-spectrum/

But the genetics are showing otherwise.

I read how the Eides are undoing people's ASD diagnoses based on their theories. You've obviously done what you think is best. In our state, that diagnosis gets you ~$30k a year in a disability scholarship and dyslexia gets you half that. It really matters which it is. And to me, I've run the genetics and the Eides are wrong. 

[Innisfree]

Okay, still need to finish that article, but I got to this part:

People on the autism spectrum have brains that favor shorter connectors. The longer ones seen in the brains of people with dyslexia indicate an easier time with big picture thinking and abstraction. 

And I can say she has serious problems with abstraction. We have to use concrete terms often, to this day, in talking about division, for example. Like "there are twelve horses in the barn, can you divide them evenly between three pastures" type examples. And big picture thinking? There was a test I remember in her evaluation where she had to look at a drawing. It was basically a big grid of four squares, with lots of smaller shapes superimposed on the grid. She was supposed to copy the drawing. The evaluator said dd never even realized the big grid existed. She worked hard trying to copy the image, but the fundamental organization completely escaped her.

[PeterPan]

10 minutes ago, Innisfree said:

Hmmm, that's really interesting. Thank you, I'll look into that. 

But wouldn't the CTOPP have shown dyslexia of it were present? Is that not reliable?

The CTOPP when? A CTOPP is just a snapshot of where her phonological processing is. It also has some RAN/RAS measures. The low RAN/RAS scores can be a lagging indicator.

[Tanaqui]

53 minutes ago, EKS said:

Are you sure she has ASD?  What you're describing sounds like a combination of dyslexia and APD.

 

Both of which are common among autistics, so....

[Innisfree]

Just now, PeterPan said:

The CTOPP when? A CTOPP is just a snapshot of where her phonological processing is. It also has some RAN/RAS measures. The low RAN/RAS scores can be a lagging indicator.

She was about nine when she had the CTOPP.  I would have to check, but I don't remember them reporting RAN/RAS.

[PeterPan]

2 minutes ago, Innisfree said:

Okay, still need to finish that article, but I got to this part:

People on the autism spectrum have brains that favor shorter connectors. The longer ones seen in the brains of people with dyslexia indicate an easier time with big picture thinking and abstraction. 

And I can say she has serious problems with abstraction. We have to use concrete terms often, to this day, in talking about division, for example. Like "there are twelve horses in the barn, can you divide them evenly between three pastures" type examples. And big picture thinking? There was a test I remember in her evaluation where she had to look at a drawing. It was basically a big grid of four squares, with lots of smaller shapes superimposed on the grid. She was supposed to copy the drawing. The evaluator said dd never even realized the big grid existed. She worked hard trying to copy the image, but the fundamental organization completely escaped her.

Yes, that's back to your central coherence theory.

Have you signed up for the SPARK study? It's free, and in fact they pay you. If she's diagnosed, boom you're there. Our kit just came. After they run the genetic testing, they'll let you talk with a genetic counselor to review the results for autism genes and anything life-threatening. So then if anything flags, you could ask them which genes, which SNPs, and then run 23andme for $69 and look for the dyslexia stuff. 

[PeterPan]

2 minutes ago, Innisfree said:

She was about nine when she had the CTOPP.  I would have to check, but I don't remember them reporting RAN/RAS.

It's part of the test, yes. They have several ways they can run it. Should be in your report or on the score page.

[PeterPan]

Here's the Chinese study I was talking about with the genes for dyslexia. https://behavioralandbrainfunctions.biomedcentral.com/articles/10.1186/1744-9081-10-23

Has a handy chart so you can see the RS# (SNP) and then what aspects of dyslexia it corresponds to. It's really fascinating when you think about it, because it seems to me more genes hitting ought to connect with severity levels.

And you get enough data from 23andme with just their basic $69 test to look at almost all the SNPs on this list.

[EKS]

19 minutes ago, PeterPan said:

But the genetics are showing otherwise.

I read how the Eides are undoing people's ASD diagnoses based on their theories. You've obviously done what you think is best. In our state, that diagnosis gets you ~$30k a year in a disability scholarship and dyslexia gets you half that. It really matters which it is. And to me, I've run the genetics and the Eides are wrong. 

I guess I don't know what you're referring to here.  The Eide's aren't the ones who did the study I linked to, and it isn't their theory.  It's just a finding.  I don't know what kind of work has been done since.  I wasn't aware that there has been huge progress on the genetics front.  I also don't know what a disability scholarship is.

My point to the OP was that dyslexia combined with APD can look a lot like ASD.  I know my son doesn't have ASD because he is now an adult and has zero symptoms. 

 

[ktgrok]

1 hour ago, Innisfree said:

She was about nine when she had the CTOPP.  I would have to check, but I don't remember them reporting RAN/RAS.

Does CTOPP look at phoneme manipulation and deletion or just segmenting and blending?

[PeterPan]

1 hour ago, EKS said:

I guess I don't know what you're referring to here.  The Eide's aren't the ones who did the study I linked to, and it isn't their theory.  It's just a finding.  I don't know what kind of work has been done since.  I wasn't aware that there has been huge progress on the genetics front.  I also don't know what a disability scholarship is.

My point to the OP was that dyslexia combined with APD can look a lot like ASD.  I know my son doesn't have ASD because he is now an adult and has zero symptoms. 

 

It's the same study the Eides have famously cited.  http://eideneurolearningblog.blogspot.com/2009/08/dyslexia-and-autism-are-opposites.html

The Eides pull back from it a bit in the comment section, after many people begin replying that their dc was diagnosed with some mix of both, that it is "Best to recognize that these general diagnostic categories still encompass many different children and brain organizations."

I'm just touchy on it, because I had people telling me I couldn't say dyslexia and autism in the same breath, that it had to be one or the other. It was one study. It's a pattern of the small number of people that were in that study. And now, in updated premium content on their Dyslexic Advantage site, the Eides are STILL being taken to task over it and are admitting that dyslexia and autism CAN be comorbid. Q & A: Can Someone Be Both Dyslexic and Autistic ? [Premium ... I can't read that btw cuz I'm not a premium member, just saying what Google is showing in the listing.

I totally agree with you on looking into the APD thing.

Sometimes the DSM has a really hard time encompassing and expressing what people are really seeing. That's why I'm so keen on genetics these days, because at least it's stable, dependable, real. And yes, the genetics thing is taking off. There's a lot of research into using inexpensive genetic testing to determine patterns in autism that can help them target medications and supplements very precisely. This is happening in the alternative world with nutrogenomics, but it's also the focus of a lot of mainstream research. They're looking for biomarkers for autism. They're looking for patterns where they can say ok this pattern of autism (genetically) tends to have this issue caused by this thing that responds to this existing, already FDA-approved med that we can rebadge to help people more quickly. There's a LOT of research going on with this right now. The SPARK study is a big, big deal, with millions behind it trying to get enough genetic data to have a library for them to run studies with. My ds has had things that would have been excruciating to treat traditionally (with medications) and genetics got us breakthroughs. I'm all in on genetics right now.

So like to me, they should do more of these MRI studies, yes! They're onto something. But they need to do it and marry it with the genetics. That's what they're doing for alzheimer's research. That's how they're targeting meds to know what will be effective. It's totally normal now, and we can get access to beginning genetic data for $69. It's amazing.

[PeterPan]

12 minutes ago, Ktgrok said:

Does CTOPP look at phoneme manipulation and deletion or just segmenting and blending?

Yes, https://www.parinc.com/Products/Pkey/76

• Subtests include Elision, Blending Words, Sound Matching, Phoneme Isolation, Blending Nonwords, Segmenting Nonwords, Memory for Digits, Nonword Repetition, Rapid Digit Naming, Rapid Letter Naming, Rapid Color Naming, and Rapid Object Naming.

[PeterPan]

The op might find this interesting http://www.linguisystems.com/products/product/display?itemid=10062  It says auditory processing on the cover, but when the SLPs say auditory processing I'm not sure it means the same as what the audiologist means by that term. So like they'll say a person with ASD needs to work on auditory processing (using a book like this, using whatever), and they're not necessarily saying that he has something an audiologist would diagnose as APD. So either or both could be going on. But since this book happens to hit things that the op's dc is struggling with (including phonological processing), it might interest her. I have it open in a tab because I'm looking at buying it to use with my ds.

[Lecka]

I think I would talk to some other adults she is around, and see what they think.

I think it’s really easy as a parent to either be very sensitive and really notice things, because we are aware of them, or else to get used to things!

Also I wouldn’t read “too” much into the friend correcting her.  I have seen kids correct kids like this when it’s truly not a big deal.  I really have.  There are things where a kid might correct another kid, where no adult would care, and it wouldn’t be impacting the child.

So I do think I would ask some adults who might tell you if they think it’s no big deal or if it is.

There are adults doing fine who have some minor speech issues.  My husband watches YouTube videos of people giving reviews, and I have seen some people that have something that I am aware of just from having kids in speech therapy, but my husband either doesn’t notice at all or thinks “it’s just how this person talks” (in a fine, non-judgmental way) and the video has a ton of views and the person has a popular YouTube channel.

Anyway I think it could be either way, but I wouldn’t go by a mom’s ear or a teen correcting.  But I think it’s worth asking about more and then making a decision if it seems it is impacting your daughter.  If it’s something where she does have some issues but it’s not impacting her in a negative way, I think it’s okay for it to just be how she talks.  

[Lecka]

I would also want to really ask how much improvement she might get from speech therapy.  

She could still have her own way of talking, to some extent, even if she did tons of speech therapy.

I don’t know, because she could have improvement too and have it be worthwhile.

But I think it’s worth asking what a realistic outcome is and if it’s worth the trouble, too.

A lot of kids have their own way of talking and I don’t think it’s because their speech therapists are bad or their parents didn’t spend enough money or gave up too soon etc.  I think it just is what it is sometimes.  

But I think it’s good to investigate a bit now, maybe ask around, and then you won’t have to wonder.  

[Lecka]

Also I think there is a bright side that she is not self-conscious about it.  It’s too bad she doesn’t care, but then, it’s also nice she doesn’t care because it’s better than if she were embarrassed about talking.  

[ktgrok]

8 hours ago, PeterPan said:

Yes, https://www.parinc.com/Products/Pkey/76

• Subtests include Elision, Blending Words, Sound Matching, Phoneme Isolation, Blending Nonwords, Segmenting Nonwords, Memory for Digits, Nonword Repetition, Rapid Digit Naming, Rapid Letter Naming, Rapid Color Naming, and Rapid Object Naming.

yeah, I just looked it up. No manipulation, just isolation and deletion (in the Elision test). Manipulation is the highest level skill, might be worth checking it out. OP, you can do that on your own at home in a few minutes time. 

Also wondering, OP, if you have the breakdown of the scores? Wondering if higher scores in some areas made her overall score okay, but there were some weaknesses in one or more of the subtests? Weakness in the Rapid naming would be working memory flags, weakness in the Elision would be phoneme awareness flags. I'd guess she did okay on the blending and segmenting because those are lower level phoneme skills and you said she does okay on reading in a lot of ways.  Either way, I'd pursue further testing for APD if possible, with the side benefit that you can tell your daughter you are checking hearing stuff, not speech, so maybe not get the same pushback you've gotten on the speech?

[Innisfree]

Okay, I pulled out the old testing. Elision is the only category on the CTOPP which is listed as below average, but phonological awareness is right at the lowest point for an average score. Everything else is solidly average.

i also noticed again that her Test of Word Reading Efficiency scores placed her sight word reading at 117 (mean=100, avg.=90-100) but her phonetic decoding efficiency at 52: so, average, but decidedly lower than sight word reading.

[PeterPan]

You can have strong working memory and poor RAN/RAS. The op can look into it, but I think the issue with the RAN/RAS is the connectivity, that you're seeing how things get from one part of the brain to another and get out.

APD testing is a funny thing. My dd was borderline on the SCAN3 screening portion (which maybe now is the SCAN4?), and what AbleKids told us is that the SCAN was only looking at one portion of the APD process. Not all. I don't know. Their results cleared her on the areas where we didn't think she had problems and *did* find problems in the one area we specifically went for (difficulty with background noise). 

So I don't know how you know how thorough the APD testing is. I know when the SLP did APD screening on my ds it was with the TAPS, and half of that a dyslexic would fail right off the bat. It was just odd. Now maybe he does have APD issues, and sure I'm open to flying him out to get him tested if I ever think his compliance is there. It's just kind of a weird field to me, so I'm not sure how to know if you're getting dependable answers. 

My dd struggled with syllabication and reading aloud unknown words until we did VT. I really think in her case it was working memory with a fuzz of tracking issues. Once her working memory was up enough that she could hold all the thoughts, boom she was there. She is heterozygous for one dyslexia gene, but she has never tested as having an issue. A little crunchy with spelling, but not enough to get a diagnosis. The work on working memory was enough to take care of it. And her spelling was due to incredibly poor visual memory.

So when we keep talking testing, it's not that we're trying to bleed you dry with tests. They just allow you to fine-tune exactly what you need to target. No matter what, you can't go wrong working on working memory and RAN/RAS. They're free to work on and can give immense bumps in functionality for some kids. 

[PeterPan]

7 minutes ago, Innisfree said:

i also noticed again that her Test of Word Reading Efficiency scores placed her sight word reading at 117 (mean=100, avg.=90-100) but her phonetic decoding efficiency at 52: so, average, but decidedly lower than sight word reading.

Is that a typo? What were the standard deviations for the test? If she's more than 1.5-2 standard deviations from the mean, that's significant discrepancy. 

Same gig on the CTOPP, look up the standard deviations and see how far she was from the mean. I agree their "average" thing is frustrating. Reality is, there are a lot of kids who are crunchy without getting all the way to dyslexia. It's kinda the difference between hard and can't. Or the difference between one gene heterozygous (making them crunchy) and multiple genes homozygous, kwim? You're not crazy that it's happening, but it's just a range of severity and support needed.

See if that's a typo on that 52. That doesn't make sense with your CTOPP scores. And how long ago was it? There's sort of the idea floated that scores on dyslexics will go up with intervention and go back down (because it's a disability) when you fade the intervention. So that would be telling. If she was getting intensive work during the first CTOPP and wasn't during another test, that would be informative to compare the scores.

[PeterPan]

CTOPP mean is 100 with a standard deviation of 15. So you would need discrepancy of 22-30 points from the mean to be significant. Scaled scores are mean 10, standard deviation 3. Your report could include either or both.

Same for the TOWRE. Mean is 100, SD 15.

[Innisfree]

2 hours ago, PeterPan said:

Is that a typo? 

Sorry, you're right, I mixed up the standard score with the percentile rank.

TOWRE sight word efficiency ss 117, %ile 87

Phonetic decoding efficiency as 101, %ile 52

This was in 2014, when she was not quite ten.

[ktgrok]

4 hours ago, Innisfree said:

Okay, I pulled out the old testing. Elision is the only category on the CTOPP which is listed as below average, but phonological awareness is right at the lowest point for an average score. Everything else is solidly average.

i also noticed again that her Test of Word Reading Efficiency scores placed her sight word reading at 117 (mean=100, avg.=90-100) but her phonetic decoding efficiency at 52: so, average, but decidedly lower than sight word reading.

The elision is the highest level phoneme awareness they tested, so it makes sense given what you are describing that that is where she struggled. And if her phonemic awareness (not the same as phonological awareness...it is a specific subset) is slightly under par that would explain her decoding issues, as well as the speech issues. I'm trying to link a video that might be helpful. 

 

[PeterPan]

Is the rate of errors the same in quiet environments as it was in the car? That would be really telling. Her error rate in the car was very high, so if it's lower in quieter environments, then that's going to raise the APD question up the list. Cars are noisy, and with APD all the noise can start to sound the same (voices, the engine, wind , etc.). So she literally couldn't hear her errors, which is why she wasn't caring. Now if they're occurring at the same frequency in quiet environments, that's different.

[PeterPan]

Those CTOPP and TOWRE scores are fine. They're about where my ds was (average range) after very intensive Barton, iirc. At that point he was not having speech errors due to phonological processing. Before Barton/LIPS, we definitely had phonological processing holding him back. Working on it just enhanced his ability to hold longer words and get them out more accurately in his speech therapy. But we're talking about pulling up very low CTOPP scores in some categories. I'm just saying if I were putting my money on something causing the errors, it wouldn't be with scores that solidly in the average range. The background noise from the car and APD making it hard to self-monitor, yes. Something else, yes. Unidentified praxis of speech, yes. 

So now I'll be curious to hear if the error rate is the same in quiet environments!