NLD a phony diagnosis?/Speaker at upcoming CA-LDA conference

After seeing your post I asked our psychologist (who specializes in LD) about the current status of NLD as a legal diagnosis and she confirmed that NLD is still not a valid diagnosis according to the American Psychiatric Association’s DSM. The correct DSM diagnosis would be 315.9 Learning Disorder Not Otherwise Specified (with precise problems spelled out.)

Of course we all know that changes can come about quite slowly as information is gathered, research performed and results published.

John

Hi John,

I think you’re missing my point. The NLD Community doesn’t care what you call NLD as long as you don’t question its legitimacy. If you go to Ms. Lemer’s website at http://www.devdelay.org, you will see clearly what her agenda is. She also discredits ADHD. That’s why we don’t think this is simply an issue of what NLD should be called.

Also, Byron Rourke and Sue Thompson and many other professionals have done extensive research on NLD. If you want the citations, go to http://www.nldontheweb.org. I forget which link you need to click on but I am sure you can find it.

Just because a disorder isn’t in the DSM, doesn’t mean it isn’t legitimate.

PT

She uses the word “phony.” That’s a direct attack on its legitimacy.

There are some semantics involved — she seems to think that if you can remediate something, then it was a phony diagnosis.

SHe’s figured out that there’s a market out there for strongly voiced opinions, and in this day and age it doesn’t matter whether they hold water. I’ve been thinking that it’s time to form a society of people who think or something…

Interesting site she has. Good links to lots of useful information including the legal definitions of LD and ADHD.

What I see is someone who encourages additional approaches to the diagnosis and treatment of what is typically referred to as LD and ADHD. I skimmed the entire site (yes, I read fast) and didn’t see any blanket condemnations or denials of the existance of NLD or ADD/ADHD, but I’ll go back over it later. All I saw were some novel approaches. Have these approaches worked for anyone? That’s the question. I suspect they have worked for some people and that’s why there are so many people pursuing them.

So I took a spin around Google and found a review of a book of hers.

www.add-adhd.org/attention_deficits_ADHD.html

Here’s one excerpt that caught my eye.

“The public needs to understand that some behavioral optometrists, physicians, educators, mental health professionals, occupational therapists, and allergists are all addressing the same symptoms and behaviors. The difference is that medication, special education, and counseling can mask these symptoms and behaviors, while vision therapy, occupational therapy and/or treatment of allergies may alleviate the underlying causes and thus eliminate the symptoms long-term.”

It appears to me that Ms. Lemer and others are approaching the problems of treatment and diagnosis from a different direction. I’m curious if they’re had any significant successes with their methods. That will be my next Google adventure when I get a free block of time to pursue it.

The nldontheweb site is also interesting and I’ve visited it before.

Here’s a direct quote:

“Although no cause for this disorder has been definitely identified, it is known that deficits in the functioning of the right hemisphere of the brain play a significant role.”

Looks like more research on diagnosis and treatment needs to be done…and I’m sorry if this angers anyone…but isn’t that what Ms. Lemer and others are doing? Maybe they aren’t mainstream psychologists and educators, but why vilify them for trying novel approaches? It’s a fact that what the ‘system’ has been doing for years is not helping everyone who needs help.

I’m a vocational counselor by education and trade. I try not to pick sides in turf battles. I’m only interested in what helps an individual achieve their personal goals. If something doesn’t work for a individual why not try a different approach?

John

My son was diagnosed with a nonverbal learning disability by a neurologist. I don’t think, however, the severity was ever at the level of a syndrome like NLD implies. We’ve had significant success at remediating the underlying disability. I think that aspect of her work is admirable and we have done some of the things she talks about. I find it problematic though that she refers to NLD as phony. It seems to me that is an attempt to get attention and is inconsistent with a rigorous approach to learning disabilities. While it may be true that nonverbal learning disabilities may be remediated in part or in whole, that doesn’t make such disabilities phony.

Beth

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<<SHe’s figured out that there’s a market out there for strongly voiced opinions, and in this day and age it doesn’t matter whether they hold water. I’ve been thinking that it’s time to form a society of people who think or something…>>

Hi Sue,

LOL even though it really isn’t funny that so many people are unable to think critically. I find that ironic since I am the one as an NLDer who is supposed to have that problem. Maybe NLDA needs to have seminars for NTs who lack critical thinking skills. They should invite you as president of this society to be the keynote speaker.

PT

No pr0oblem with trying a different approach; calling others’ phony is a big problem in my book. In my experience, the people who have a need to do this tend to care more about winning arguments (or attracting attention with the arguments) than actually helping people.

“…for this phony diagnosis.”

Well, not to beat a dead horse any longer than I have to, but NLD is not yet a legal diagnosis. When I first read the quoted statement I didn’t think for a second that she was referring to people or approaches, only to what was printed…phony as the modifier of diagnosis. As in ‘not real’ - and it isn’t a real diagnosis according to most commonly used standard - the DSM.

Maybe phony is too strong a word.

You do realize that dyslexia is not a legal diagnosis? It’s 315.00 Reading Disorder.

No dyscalcula either. It’s 315.1 Mathematics Disorder.

Then there’s 315.2 Disorder of Written Expression.

And 315.9 Learning Disorder Not Otherwise Specified.

Then the DSM-IV moves on to Motor Skills Disorder, Communication Disorders and Pervasive Developmental Disorders.

What is commonly referred to as NLD or NVLD can be covered by what is in the book already by including the specific problems under 315.9.

So I guess we could say that until a diagnosis is included in the book it is, at least in one sense, phony.

John…trying not to split hairs unecessarily, but have you ever tried to obtain services for someone using an unapproved diagnosis? It won’t fly and only causes delays.

True.

People who make presentations at conferences choose their words on purpose. Choosing to use the phrase phony diagnosis speaks volumes about the agenda of the speaker.

Well I doubt someone would make a talk saying that NLVD is not in the DSM. I am quite sure the person does not mean to imply that the dx is not in the DSM!!! I’m sure they mean to say that that they think it is either a catch all (though I don’t think they’d use the word phony), that the condition is not a learning disability (ie it is something else, like autism, in which case they would not use the word phony. Or that it is not a dx at all quite complaining, etc. in which case they would indeed use the word “phony”.

I don’t think there is a place for such a speaker at the LDA conferences, however that person has a right to speak and to their opinion. I just think they should find their own forum for it.

Many kids with NVLD have ld in math anyway or some other school type ld, besides social problems that effect school.

—des

>”Non-verbal learning disabilities (NLD) describes a cluster of deficits in motor, visual-spatial, social and sensory areas in the presence of verbal strengths. If viewed as a developmental delay in
motor, sensory-motor and visual processing, then help is on the way. Learn how to remediate, rather than just compensate for this phony diagnosis.”

One thing about this that is interesting no where does she really say that that there is not a problem of some sort. It is a developmental delay she claims in several different areas (motor, sensory motor, visual processing) with verbal strengths. Sounds sort of non-verbal learning disabled to me!!! Problems in nonverbal areas and strenghts in verbal ones.

__des

Phony is indeed a key word, and I do wonder what John’s agenda is here.

Taking analogies, scarlet fever is now entirely curable by antibiotics, and it is known to be a complication of a strep infection so it would nowadays be listed under ‘strep’ rather than under ‘scarlet’. That doesn’t make it any the less a real and very dangerous illness that can cause heart damage and blindness, and it would be the height of unprofessional behaviour to call it phony. Similarly pinkeye has an official name which escapes me for the moment and it is also completely curable by antibiotic drops, but neither the use of the common name nor the curability make it in any way phony.

One could call a diagnosis ‘unnecessary’ if it overlaps other diagnoses already on the books, or ‘vague’ if the criteria are not well-defined or measurable, or ‘inconsistent’ if the criteria are self-contradictory, or lots of other words. Choosing, deliberately, the word ‘phony’ is an indication that the person has a destructive agenda.
Sometimes something *is* fake and then there might be a reason to take destructive action towards it — certain philosophies of teaching come to mind — but that is also a matter for measurements and facts, not polemics.

I’m back near a computer. :)

I don’t have an agenda, but I’ve seen my share of diagnostic foul-ups. I’ve spend 30 years working with people with disabilities - all disabilities except blindness. The state agency I work for receives the majority of our funding from the federal government, but some is state money and some is grant money from various sources. The point you ask? The funding sources determine what set of diagnoses and code numbers are acceptable. Around here we use the DSM, but records are also kept using RSA codes(U.S. Rehabilitation Services Administration.) We use terms such as dyslexia, dysgraphia and so forth, but they aren’ t in the DSM, our psychologists don’t use them, and the rehab hospital doesn’t use made-up or layman’s terms.

We frequently receive school psychologists’ reports and they are not usable for eligibility purposes because they do not include formal, legal diagnoses. In this state they use statements such as “…suggest that the committee consider placement in a Multiply Handicapped Class” or “Specific Learning Disabilities Class”. The mention of NVLD would fall into the same category - useless - because it’s not legally recognized by the folks controlling the funding.

It’s too early in the week, and the day, for explanations, but services are easier to obtain if know how to access the funding and that depends on accurate diagnosis AND CODING. You can’t just go with the diagnosis that you like or prefer.

And that’s my advice for this morning. :) It’s worth exactly what you paid for it, but I do hope that you find it useful.

John

Looks like I’m going to have to register to get access to the EDIT feature. Either that or learn to type/spell.

John

The value I see in this person’s viewpoint is that they are not settling for labeling the child and then using that as an excuse for what the child can’t do. They are trying to remediate. Far too often kids are labeled LD and never receive remediation. Labels can sometimes become an excuse as to why the child “can’t learn”.

I personally think large numbers of kids are misdiagnosed with ADHD when they really have other issues that go undiagnosed. I do think there are underlying problems like auditory and visual processing that COULD be worked on if recognized. I think there is great interest and potential in movement and balance therapies like Bal-a-metrics, Neuronet, the Dore clincs, etc., etc.

Kids with NLD symptoms certainly would get no specialized therapy where I live. They’d just be considered disabled and would be accommodated. I’m glad to hear there are those working on remedial methods.

Janis

Hi Janis,

In my opinion, you’re mixing apples and oranges. Again, no one in the NLD Community is against learning about remediations, including ones that Ms. Lemer thinks might be helpful. But we strongly object to calling it a phony diagnosis when it definitely is not and adding insult to injury by doing it at an LD Conference.

Also, just because some people get misdiagnosed with NLD or ADHD, doesn’t mean they are phony diagnoses. Many years ago, I was misdiagnosed as having melanoma when my true diagnosis was juvenile melanoma, which is non cancerous. But no one doubts the legitimacy of melanoma, right? Why should NLD and ADHD be any different?

I’ll be you and several parents on this board have had to deal with various folks who didn’t believe your kids’ problems were legitimate. They might not have said that they were phony diagnosises but used similar language. Why then is it ok for Ms. Lemer to use this terminology?

We are not against learning about any remediations but we strongly object to having NLD called a phony diagnosis at an LD conference no less.

PT

Agree — perhaps it’s an NVLD thing (or public education), and the lady has trouble with things like connotations and subtleties of word meanings. Or, maybe the title could only be X characters, and she’d started out with “less than useful” or “ambiguous” but had to trim some letters…

I happen to have had my two children evaluated by Ms. Lemer, back when her main bread and butter was preforming educational assessments rather than advocating various remediation methods for developmental delays.

Based on my somewhat brief discussions with her sometime ago, I think she looks at almost all cognitive problems as the stemming from developmental delay brought on in almost all cases by environmental factors—allergies, antibiotics, mercury contamination etc. She appeared resistant to the idea that cognitive problems could arise from other sources like genetics and autoimmune disease.

At the time, I thought she was too dismissive of what science can tell us about these kinds of problems, while all too embracing of theories that have little science behind them. (Not an indictment of some of those theories—I find many of them intriguing keep an open mind, but I wouldn’t reject the theories that do have science behind them.) I also found her to be a bit over-eager to use her evaluation of my kids to make her name known to their schools (to generate more business?—perhaps I am too unkind.

Ms. Lemer is a co-founder of a school for children with developmental delay. I wouldn’t be surprised if she simply wants to advance her develpmental delay theories by rejecting dxes that don’t carry that label, even if ultimately the labels don’t matter that much.