How important is a formal diagnosis of dyslexia?

[SonshineMama]

We had a neuropsych eval in January for my ds. He was diagnosed with all sorts of things. BUT because he was referred for medical issues (post chemo and post concussion), the neuropsych said he was unable to diagnose him with dyslexia or our insurance company would deny the claim. However, he said that ds is dyslexic. We've been treating him as such since then.

 

However, he's entered LiPS this fall at his SLP because we are struggling to remediate the audiological aspect of his dyslexia.

 

Because ds has the long term diagnosis of "OHI" which is other health impairment because he's a cancer survivor, the neuropsych doesn't feel a formal diagnosis is a necessity. I am beginning to believe we need a formal diagnosis. It is so much clearer and succinct to handle accommodations in the future and to explain to people.

 

AND on top of that, several therapists feel ds has acquired dyslexia from his neurological injury while on chemo. I am reading overcoming dyslexia right now and it's actually listed as a type of dyslexia. I can't help but wonder if I can fight for the current neuropsych to redo his report with the understanding that it is a medically acquired condition?

 

Any thoughts or advice?

[Hikin' Mama]

primarily so that people wouldn't blame her reading on my homeschooling. :) After reading Overcoming Dyslexia, I knew that's what she had, but wanted something "official."

 

However, I will need to have her tested again if she wants to go to college so that she can get accomodations. I think my local cc requires a diagnosis that is not older than 3 years.

 

Best of luck to you!

[Paisley Hedgehog]

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Edited November 22, 2012 by Shari
More thoughts

[Stacy in NJ]

There is no formal diagnosis of dyslexia; it doesn't exist as a diagnostic code and physicians don't usually diagnose it. The word "dyslexia" simply means, in either Latin or Greek (can't remember which), difficulty with language. Doc's usually look for an underlying reason for the dyslexia like receptive or expressive language delays, slow processing speed, or a delay in RAN (rapid automatic naming speed).

[EKS]

There is no formal diagnosis of dyslexia; it doesn't exist as a diagnostic code and physicians don't usually diagnose it. The word "dyslexia" simply means, in either Latin or Greek (can't remember which), difficulty with language. Doc's usually look for an underlying reason for the dyslexia like receptive or expressive language delays, slow processing speed, or a delay in RAN (rapid automatic naming speed).

 

There is a formal diagnosis of dyslexia and the code is 315.02. Dyslexia has a very specific combination of symptoms that go well beyond difficulty with learning to read/language.

[Paisley Hedgehog]

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Edited November 22, 2012 by Shari
edited for TMI

[SonshineMama]

If we can get the dyslexia linked to chemo, not only with our insurance pay for a 2nd eval but they will pay for all his therapy because it would be medically related. Our SLP (university) is trying to get a functional MRI where he'd be able to read and see the brain activity. This may pinpoint an area of his brain that was damaged while on chemo and help us determine more focused brain therapy. On top of that he has ride side body weakness which is often linked to acquired dyslexia.

 

We have a long list of accommodation recommendations already from the neuropsych. I actually realized after posting this that ds goes back to the neuropsych again so I could just wait it out until then and lay all my concerns on him then. He will have to go every 3 years because childhood cancer survivors have significant long term affects of chemo including learning issues. He wouldn't need any accommodations until after his middle school visit almost certainly so it could be an issue not worth exploring.

 

I have all the data indicating his learning issues. He has taken CHOPP through the SLP and they have confirmed his delays in those areas.

 

I plan on calling the neuropsych but want to be organized in my presentation of "why" we are starting to want a diagnosis. He's already told me he would help us if we want to pursue formal diagnosis. It's more a matter of "do we need it NOW? or do we wait until he's closer to college?"

 

Is it common for colleges to require additional recent testing for accommodations? Is this true for the SATs as well? If so, we may as well wait until that's closer. I thought we needed an early paper trail specifically indicating dyslexia. I have binders worth of paper trails from different therapists documenting his learning struggles. Just no paper from a neurpsych or educational psychologist stating dyslexia yet ;)

[PeterPan]

Jodi, what you might be able to do is call and talk with a couple other neuropsychs to see if another *would* be amenable to giving both diagnoses. As you say, that's pretty compelling if your insurance would pay for the dyslexia-related therapy with that label. But maybe the np knows something you don't know about what they'll pay? That would be the one thing to sort out. But anyways, after I did enough sleuthing, I found that in our area (region of the state) there is a "dyslexia association" and that has neuropsychs on the board. I figured going with one of those was going to give me as good a shot as possible at getting a clear assessment. So that might be a way to find some more names and just talk it through with them. Each doctor I've called has been willing to call me back and talk for quite a while to answer questions about whether they'd be a good fit.

[merry gardens]

How important a formal diagnosis is depends on what you want to do with it. Do you plan to enroll your child in a school in the near future where he will need an IEP and special accomodations? If so, then you probably need some type of diagnosis, (although his current diagnosis may accomplish that.) Do you plan to continue homeschooling for the next several years? Well, then a formal diagnosis can wait as long as you are making sure that the teaching methods used meet his needs.

 

I don't have a formal diagnosis of dyslexia for my ds. At first, I really didn't want the paper trail because I hoped the problems would resolve once he started reading. (He had problems learning to read right from the start and it was clear something wasn't right.) A slp did some evaluations that established he had some of the underlying problems usually found with dyslexia. Since then, we've successfully remediated his phonemic awareness and he's learned to read, but he continues to have difficulties that typically go with dyslexia.

 

If I ever enroll him in school, I want a neuropsych exam with a formal diagnosis so teachers and others will know his special needs. If he's still reading slowly in homeschool at high school, then I'll want a formal diagnosis to get accomodations for college entrance tests, (but those evaluations needs to be recent and right now wouldn't help him with that.)

 

In the meantime, a formal diagnosis wouldn't really change what we do. I teach him using methods developed for people with dyslexia and he's making progress. The only time I really wish we had done a formal diagnosis earlier is when I want something to measure his progress or someone to look over what we're doing and give us feedback.

 

It sounds like your neuro-psych is playing the game by the rules that some insurance companies have established. If he writes "dyslexia", they may refuse treatments, trying to blame a "pre-existing condition" or saying that the schools should cover the cost since it's "educational" rather than "medical" or they may require further "proof" (that may be nearly impossible to prove) that the insurance company should pay and not someone else. As long as his needs are being met, I'd just go along with his present diagnosis. I don't see how a diagnosis of dyslexia would change anything, as long as people are teaching and working with him using methods that meet his needs.

[Lisbeth]

My DS9 has what I have been told by his excellent Orton Gillingham tutor is *severe dyslexia*. As in, he's one of the most challenged she has seen in all of her years of tutoring. We did get a formal diagnosis, because at that time he was in a private Catholic school and they not only wanted to hold him back for kindergarten, but refused to test until 2nd grade. So I went out and paid for our testing out of pocket. Then they had to give him an IEP and work with him (and not hold him back for kindergarten when he was obviously very intelligent). Now that we homeschool (this is year 3) - I'm glad we did get the diagnosis because there are nice OG programs (we are on a wait list for one) that are free if you have a diagnosis, regardless of income.

[rafiki]

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[EKS]

Would you be able to link us to specific information regarding the criteria that must be met for a developmental dyslexia diagnosis, the code you mentioned?

 

When I google, it's easy to dig up the DSM IV criteria for dx ADHD or any of the Autism Spectrum Disorders (Autism, PDD-Nos, or Aspergers).

 

Many of us here haven't been able to locate a link that gives the specific criteria that must be currently met for a dyslexia diagnosis.

 

Here's a link to the proposed criteria for the DSM 5. There is a tab on the page for the current criteria in the DSM IV. It is called "reading disorder" in the DSM IV.

[PeterPan]

Michele, when I googled it, it comes up that 315.02 is disorder of written expression. That's my dd all over, lol. She writes a paragraph in her co-op class and comes home WIPED. She wrote 4 paragraphs for her co-op class a couple weeks ago. She did it, and they were nice. But it took her 6 HOURS to do those 4 paragraphs!!!!!!! Needless to say, she was too tired to do much else, lol.

[EKS]

Michele, when I googled it, it comes up that 315.02 is disorder of written expression. That's my dd all over, lol. She writes a paragraph in her co-op class and comes home WIPED. She wrote 4 paragraphs for her co-op class a couple weeks ago. She did it, and they were nice. But it took her 6 HOURS to do those 4 paragraphs!!!!!!! Needless to say, she was too tired to do much else, lol.

 

315.02 is developmental dyslexia

 

315.2 is disorder of written expression

[Stacy in NJ]

There currently is no official medical diagnoistic criteria for dyslexia.

 

There is a formal diagnosis of dyslexia and the code is 315.02. Dyslexia has a very specific combination of symptoms that go well beyond difficulty with learning to read/language.

[rafiki]

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[rafiki]

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[Stacy in NJ]

You are correct, madam.

[Stacy in NJ]

It's not a diagnosis; it's a code used by physicans to properly bill insurers. A diagnosis needs specific diagnostic criteria. There is none for "dyslexia".

[peacefully]

:iagree: Stacy's correct.

[PeterPan]

Ok, just to play along with this, then what is it the np we're scheduled for (and that yllek and michele used) are considering when they say they'll diagnose components and SOMETIMES also dyslexia, sometimes not?

 

He mentioned the Fletcher book, but I haven't been able to get it yet. Maybe tomorrow if I go to the big city. Otherwise, it will be another week.

 

And yes, it does seem like the Eides mean something big picture (what they call "dyslexic processing" or an inborn brain structure that affects a lot of areas) that is different or beyond the scope of what the coding means.

[rafiki]

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[PeterPan]

Ours diagnosis "Reading Disorder" as that is a DSM IV code, but he didn't in our case because not all areas of language were affected. My older two have a solid knowledge base and verbal abilities. He said a true "Reading Disorder" affects ALL areas of language. They have those things because of the intense one on one instruction, multiple methods used, DVD and hands on enrichment, and heavy use of audiobooks.

 

The therapists labels are for "insurance and possibly even educational purposes" and are subjective.

 

Ok, I was reading DA (Dyslexic Advantage) some more tonight and wondered if some of the things it mentioned square well with what you're saying. (at least from the Eides viewpoint)

 

p. 64--You can have problems with expressive language and be dyslexic but have a high or gifted level verbal IQ.

 

p. 65--They mention the dyslexic can be strong at non-verbal reasoning. Non-verbal being what is going on before it has to get translated to verbal.

 

Did your np test non-verbal reasoning? Is that normal to test? DA implies non-verbal reasoning often gets overlooked or undervalued. And did he test their verbal IQs? Is that score what he's using as the basis for saying they can't be dyslexic? And did he he do phonological tests where they had to decode non-sense words to determine their actual decoding? When I asked, this np had specific tests he said he would use to split hairs and identify the dyslexia even in an otherwise seemingly well-reading, functional student. He felt pretty confident he could tease out and demonstrate her problems with decoding and sounding out, despite her being overall a very good reader (due to very strong visual memory).

 

So are there standards on diagnosis for the "reading disorder" label?

[SonshineMama]

Well, I walked into speech/LiPS therapy today to an answered prayer. We had been trying to get educational psych testing done at the same university ds does LiPS and speech. It would be WAY cheaper than any other option. They had previously said it was "out of their expertise" BUT the SLP advocated for us to get it done since it's standardized tests that any psychologists can do. AND they changed their minds so he should be able to get it all done there :) :) :) :) They actually have a student working WITH our neuropsych so they are making an exception for us. At this point, it looks like they will speak to our neuropsych (after we sign a release), get him re-evaluated where necessary and get us a detailed LD report (he has other issues "undiagnosed" as well at this point -- issues that showed up but aren't documented basically).

 

Not sure if I should let it go and skip attempting to get his dyslexia linked to his cancer to get therapy paid for. Quite honestly, our insurance is wonderful in what they will pay for but horrible if they think they shouldn't pay for it (even when they are wrong). They tried to stop paying for ds' chemo when a nurse consultant told them that "no child should need chemo that long" That was a battle; can't imagine what this one would look like.

 

Regardless of medical codes, there is starting to be significant information out there about "acquired dyslexia" (I think there is other names for it as well). WHich basically indicates that a brain injury or neurological injury can cause dyslexia. THIS is what we believe my son has. The NP has been very helpful in spite of not being able to "diagnose" ds officially beyond OHI. He offers to do whatever we need done and we really liked him a lot. Very supportive of our homeschooling effort :) And wiling to talk to whomever we need him to. I can call again if I need to but wanted to get advice here cuz it's the best place I know to get this type of advice :)

[peacefully]

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[PeterPan]

Ok, I think this makes sense, but what is the difference between an ELD diagnosis and disorder of written output? ELD is broader, and DWO is narrower, focusing just on written? That's really interesting. But the NP *caught* that there was *probably* the broader ELD and referred you off? Or you figured it out for yourself?

 

See I can't remember where I saw this, but basically isn't the implication that ALL dyslexics would have ELD?

 

Well that's really interesting about the phonological processing test results. I'm trying to notice all these tests, because I'm trying to compare them to what this NP might do. :)

[PeterPan]

Yllek, look at this from the DSM5 http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=486#

 

 

As children with LI advance in age they may transition from an early diagnosis of Late Language Emergence (LLE), to Specific Language Impairment (SLI), and perhaps later, to a co-existing diagnosis of LI in association with Learning Disability (LD). Mashburn and Myers (2010) documented how the caseloads for special educators shift from speech and language impairments for the early grades to a drop off by 5th grade, off-set by a notable increase in the proportion of children identified with learning disabilities by 5th grade. Although individual children were not tracked in that research for changes in diagnostic label, the shifting group data provide evidence for phenomenon in which the same children meet different diagnostic criteria at different stages of development and at different ages.

[rafiki]

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[PeterPan]

Interesting. It looks like the CTOPP that he mentioned to me is a more specific test.

[peacefully]

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[SonshineMama]

Interesting. It looks like the CTOPP that he mentioned to me is a more specific test.

 

My son has taken CTOPP 3x's now still without a formal diagnosis *sigh*

 

2 times from the SLP, once from the NP.

 

The rest of this, I am reading with interest. Makes me wonder how they choose their tests and I am going to pull out ds' paperwork to compare to that nice list you posted Michele! I am unsure beyond CTOPP what he has actually taken. I only know he's taken that because he just retook it this fall at the SLP before they started LiPS.