Lurker intro, NLD vs. AS, or what I've learned from lurking

[mamacate]

Hi folks,

I've been lurking on this board a bit, having thought of the DIS as more of a place for trip planning than community. However, after having read a few threads here the other day, you guys are really making me think, and I wanted to de-lurk and tell you about it and maybe get some support. This seems like a friendly group! I'll warn you now, I do go on...

It started when I read the thread on the thread titled "Anyone w/ emotionally disabled 4 year old child?" I thought BTDT, maybe I can help her. Well, I started reading and of course this was a lot like my story. Around 3-4 years old, my son started losing it at school, being almost impossible to control, and eventually being kicked out of two daycares, one with which we had close personal relationships with the directors, who would have kept us there if they could possibly have done. He's now just about to turn 6, and fter a litany of providers, he's been diagnosed with Non-verbal learning disability (NLD), ADHD, generalized anxiety disorder (GAD), and sensory integration dysfunction (SDI). He has an IEP and is doing okay in school with a really great K teacher and a behavior program. Things could be worse, but he was moved in crisis at the beginning of the school year and now he and his twin sister are in different schools on the opposite sides of town. We really don't know what to do about summer, and the school is playing games about whether they'll offer summer services (yes in the meeting, then it's not in the IEP ).

He's very bright and charming, wants to be a scientist, and is currently obsessed with money (we're channeling it into coin collecting, but really he wants money), legos, and star wars and loves all kinds of knowledge. He has an incredibly low tolerance for frustration and change, and HAS to know what to expect.

Reading through the thread mentioned above, especially bookwormde's comments, and also her comments on this thread really got me thinking. And the more I think about it, and the more research I read about the differences (or lack thereof) between Asperger's and NLD, the more I wonder why we're not treating this like Asperger's. In addition, in our state and school district there are a whole range of services that you can only access with an ASD diagnosis. I don't want to waste valuable resources that aren't appropriate, but if it can help my kid, lemme at it!

Much of what they're doing at school has to do with intensive behavior mod programs which work....kind of...but stress us all and don't seem to touch the underlying issues. They help him remember to hold it together and modulate his reactions, which he needs to do because when he melts down it's not pretty, but they assume he has the full capacity to develop the tools to do that, and I'm not sure that's true. I've always said he's like a kid with Autism but he's very verbal and reasonably engaged with the world around him. Well, now that I've done more research, it seems like that's essentially the definition of Asperger's.

That said, we had an neuropsych eval last year. We needed SOMETHING for the school district to stop treating him like a behavior case (didn't really change that, but it got better), so we went with the person with the shortest waiting list, who wasn't board certified (PhD but not boards), and who has a very mixed reputation around here. She told us "he's too related to have an ASD, put that out of your mind!" when I tentatively brought up the idea of ASD.

That said, two years ago we saw an OT about sensory issues and she said she ruled them out because he wasn't hypERsensitive. Well, he's a seeker, and the sensory therapy that we just started (two years later than we could have!), has made a huge, HUGE difference and has probably been the best therapy we've done so far. It feels like the whole of his life has been made up of people telling me I'm wrong about what's going on with him (biting is normal in toddlers, he's just a boy, he needs more discipline, etc.), and then having things get so bad that schools, etc. tell me they can't deal with him. His pediatrician blew our concerns off for years, then moved away last year and we haven't really found a new one--we're just using the ped practice and relying on the psychiatrist to tell us what's going on.

So if you're still with me, I suppose I could use some advice. I'm calling around to major assessment centers--we're equidistant from both Yale and Boston Children's, but both have a year-plus waiting list and will require us to pay $3000-4000 out of pocket (the cost of a disney trip! of course we'll pay whatever we need to and skip the next disney trip, but it sucks since we pay so much for private health insurance and Children's is actually in-network...for everything but this). Our thinking is to update the neuropsych eval with a, ahem, real neuropsych, and add the ed testing they couldn't do when he was 4.

I took the bull by the horns and picked another ped from the same practice and will have a phone conversation with him on Thursday, but am considering a ped with interest in developmental disabilities as his primary doctor, which would mean switching to a practice 25 miles away in a city we rarely visit and having him at a different ped practice than his twin sister. I haven't heard anything good or bad about this ped since she's so far away. I'm also going to talk to the psychiatrist about it, but I'm worried that I'm going to come off like I'm trying to get the diagnosis I want regardless of reality, and I'm so tired of being judged as a mother that going through that just makes me feel tired. We can also ask for a referral to a developmental pediatrician as a specialist visit, but I'm not sure I want to involve another practitioner unless the person really makes a difference. Another voice in the cacophony...not so helpful.

Anyway, that's me. Sorry for being so wordy (can't imagine where the NLD stuff comes from in my son!). Any advice or just support would be very welcome.

Thanks!

C

 

[bookwormde]

I am always happy when I can get someone thinking.

If you have a developmental pediatrician within range who has lots of experience with aspergers children then that is who your child's primary pediatric doctor should be. Just use your other child's doctor for the real basic stuff.

Do no be afraid to get a copy of the DSM-iv diagnostic standards and see if your child fits it and then take your analysis to the doctor (no one knows your child better than you). If they are not receptive then move on to a new doctor unless they have some very valid counter posing positions which you can comfortably accept.

For a time when my son was younger he did not have any of the stereotypical patterned behavior but as school stresses increased these manifested themselves (they are almost non existent now that we have the proper supports for him and his anxiety level is greatly reduced.

Your child's "behavioral" issues are typical for an aspergers child who has not received the proper level of curriculum in the "social skills areas" at school. Behavioral programs may have a short term effect for your child but are not really appropriate in the long term for aspies, who need a ground up approach with completely different motivating factors.

Whoever did you child eval was obviously not competent to do so (I had a hard time not using the typical aspie phrase to describe him/her), especially to make such an uniformed comment. Our first eval was bad but not quite that blatant.

Any Clinician even marginally competent in Aspergers who read just your couple of paragraphs above would know that that your child was at least sub clinical aspergers and would quickly be able to evaluate if he met the criteria for a clinical diagnosis.

One thing to be aware is that some bright aspergers children in many circumstances accumulate intellectual social skills which can mask the lack of innate social skills. It takes someone with a complete understanding of Aspergers to pick this up, the questionnaires and a 30 minute visit just don't do it.

A lot of schools will shy away from even mentioning aspergers unless they are handed a diagnosis because in most cases what is needed for an appropriate education requires a 1 on 1 paraprofessional for at least a few years and several hours a week of specialized social skill training and a modification of the standard curriculum to a more visual format. All these things are expensive, particularly if they have not done them before.

bookwormde (Disney dad)

 

[momtwoboys]

Sounds like you wrote about my son who is now 7! We were diagnosed at Conn Children's Hospital, by Dr Ann Milanese.she's awesome! For a neuropsych eval I recommend Dr Timothy Whelan of Baystate (3300 main) I see you are from Western MA we are too. Good luck and try to get into the Dev Ped (Dr. Milanese) ASAP!!!!!! Let me know if you have any other questions. My son was Diagnosed with Failure to Thrive, Sensory Processing Disorder, Microcephaly, Asperger's , and was born with Hydroneuphrosis!

 

[merryweather20]

This is comment is maybe not a perfect fit, but I was recently reading an article on ABC news about how they were misdiagnosing autistic little girls, because often little girls were able to sort of "fake" social interaction.

http://abcnews.go.com/Nightline/story?id=4177353&page=1

Seems like there are lots of problems across the board, with diagnosing on the spectrum.

Lots of for you and your family.

 

[JulieWent]

My son actually HAS NLD and fits the diagnostic criteria for it pretty much perfectly. That said, there is A LOT of overlap between ASD and NLD. There are many differences, though. Children with NLD GENERALLY have a terrible time with math-related concepts and do very well with language-related ones (at least until the language becomes composition). ASD children FOR THE MOST PART do better with math-related concepts than their NLD counterparts. (Once again, these are HUGE generalizations.)

Another thing that people in the NLD world say is that many people with ASD also have NLD. Don't know exactly how that works, but I've read it in the literature time and time again. Here is a link to an article about both: http://www.nldontheweb.org/Dinklage_1.htm

Here is another link to a site with HUGE amounts of information about NLD and what it is and is not.
www.nldontheweb.org

There are dozens of articles that will help you weed through what others have told you.

Good luck to you. I know how confusing this all is. I think you're on the right track in getting a good neuropsych eval. And it IS frustrating that there is SO much available for one thing and not for another. (Our neuropsych even warned us about this. He said, "We could misdiagnosis him as Aspergers, and it would be easier for you to get services." I declined because I didn't want to misdiagnose my child because our system is stupid.) On the other hand, if your child HAS been misdiagnosed, it's important to get an accurate assessment. And it will make things easier just knowing that YOU know, no matter what others say.

Julie

 

[bookwormde]

From my reading there is one primary difference between ASD and NLD and that is that ASD adds the lack of innate social skills component (1 more neurovariant gene set). That is not to say all asd children would be clinical NLD if the social skill component were not there but a large portion probably have that gene set also. Your comment about "mathematics" is interesting, my theory is that somehow the lack of innate social skills and the abilities in the area of non linear dynamics are closely linked (I won't get into the theoretical basis and bore you). No two of our children are identical, a good indication of the complexity of the neurovariations involved.

bookwormde

 

[mamacate]

Thanks folks.

This has already been really helpful. Bookwormde, sorry for getting your gender wrong! Oops! I am very grateful for your comments, both here and on the other threads, since they are really giving us a different perspective on things. We weren't terribly impressed with the (neuro)psych, but like I said, we were desperate. The plan has always been to talk to someone else as well. While I'm incredibly frustrated (in retrospect, in particular with our ped), it's true that he was and is still very young, so some of this can be hard to tease apart as it emerges.

I've been over the diagnostic criteria a few times and I think he does fit the criteria, though the question is whether his restricted interests are restricted enough. He has enough of them that it's not quite as intense as kids I know who can talk of nothing but trains or baseball. Even so, dude has never seen Star Wars, but can explain the entire story in great detail, was physically rigid with anxiety when he had to loan his legos to his cousin for five minutes last month, and carries coins around with him for hours at a time. Yet unless we're trying to take one of those things away from him, his interest in them seems strong, but not clinical IYKWIM.

Julie, it's nice to meet another mom with a kid with NLD. I read somewhere (can't find it now) that almost all kids with AS have NLD, but not all kids with NLD have AS. That made pretty good sense to me. I feel like it's hard to find help and support around NLD, and when I did find the few groups of parents talking about NLD, none of the rigidity and intense behavior problems we see with my son are reflected. Of course that could be just a matter of not finding a group where those voices dominate, but it made me wonder (and also feel more isolated). As for the math thing, I did read that somewhere, though it seems like nobody knows for sure whether math ability is diagnostic or not. DS is just in kindergarten, but he loves math and is zooming ahead with counting, addition, and subtraction, and is starting to understand simple multiplication. That said, we're not getting into algebra or anything abstract at not quite 6 years old.

Merryweather, thanks for that link. I read something similar in the NYT and gave it to a friend who was diagnosed as AS in adulthood. It made a lot of sense to me, especially since I don't see her as "impaired" to the extent of the stereotype in my head. In the article they interviewed someone who talked about girls being encouraged to be "nice" more, and that being the reason for AS girls being less prone to violent meltdowns. I'm here to tell you that if telling a kid to be "nice" prevented meltdowns...well. But other than that, I really appreciated the article and totally see the link to my story, even though DS is a boy. Thanks!

momtwoboys, thank you thank you! I actually have a call in to Whelan's office in Amherst. Unfortunately, Milanese is not on my health plan (Harvard Pilgrim). She sounds amazing based on a little googling. We may switch to a PPO next year, and will keep her in mind, but I will pursue the idea of a dev ped further. I'm going to PM you.

Thanks again. I'm glad I de-lurked!

C

 

[LauraVV]

He's now just about to turn 6, and fter a litany of providers, he's been diagnosed with Non-verbal learning disability (NLD), ADHD, generalized anxiety disorder (GAD), and sensory integration dysfunction (SDI).

That said, two years ago we saw an OT about sensory issues and she said she ruled them out because he wasn't hypERsensitive.

As someone whose kids who have had really bad neuropsych evaluations I can say that even certification isn't always what it's cracked up to be. I'd recommend getting several parent recommendations.

It seems a bit strange that they've made an NLD diagnosis for such a young child. It's not usually considered until about the 3rd grade because younger children are often just not developmentally where they need to be for NLD testing.

Those with SID can be sensory seekers or avoiders or both. Our daughter, for example, can't stand to have her head touched. She can't stand anything warmer than lukewarm bath water. But, she spins, hangs upside down, and can't tell if she has her clothes on the right way.

Our Katie has SID, CAPD, and NLD. I've always thought that NLD is a spectrum diagnosis. NLD is a neurological disorder caused by right sided brain damage (or disorder of right brain) and people with this often have left sided weakness. Some people say that NLD is the opposite of dyslexia but our daughter also has characteristics of dyslexia. She's a former preemie but also has a metabolic disorder and very mild left hemiplagia. Her 19 year old brother has poor eye contact and lots of sensory issues.

http://en.wikipedia.org/wiki/Nonverbal_learning_disorder
http://www.nldontheweb.org/Dinklage_1.htm

There's an online group for parents of kids with disabilities. There are some IEP advocates on the list.

www.our-kids.org

 

[mamacate]

Yup. I definitely need to get some good recommendations this time, and luckily now we're not in quite as much of a rush to document stuff for the school system. Word on the street is that this neuropsych is rather fond of the NLD diagnosis. I do think a lot of it is right on for DS, but I think there's more going on there than just NLD. He's very verbal, very bright, and had very divergent scores on her tests (which could have just been the ADHD--they tested similar areas on two different days and in one case he did great and in the other he did terribly--it's something I know he can do--report back the content of a story).

Perhaps the *more* I perceive going on is the ADHD and the SPD and the GAD (which I think is caused by the others, as is the ODD which I don't even mention because it just means he gets in trouble a lot). But when I read stuff about AS, it is the best reflection of my experience I've found, compared to any of the others.

An aside: I just found this book, and it's FABULOUS in case anyone else might be interested.

ETA: OMG, it's actually written by the mom of the girl in the ABC news article mentioned above, who is interviewed in the video clip. It IS a small world after all!

Thanks again!

C

 

[bookwormde]

Do not worry that your child "special interest" do not rise to the clinical level (ocd or otherwise has life damaging consequences) most Aspergers children's don't, they just limit social interaction. Also his "reaction" to the loss of these items puts would put a check in the box for that item of dsm-iv for most competent clinicians.

I know that as parents you worry, my wife sure does, but with the propper supports and curriculums your child has the potential to have a much more fulfilling life than the average person.

And the gender thing, no bid deal, I am an aspie. Most posters seem to be disney moms anyway.

bookwormde

 

[momtwoboys]

Also you should know that many of the Dev. Ped only see kids under the age of 6! She still sees my son yearly for now, but the initial visit is for children under 6! Please try to get into one soon! Good Luck.

 

[mamacate]

Ack, his 6th birthday is this weekend!

I'll give it a shot anyway! Thanks!

 

[bookwormde]

WOW thats the first I have ever heard of a developmental pediatrician with and age limit like that. I would love to know the logic behind it? Our children need monitoring throughout there development!

bookwormde

 

[momtwoboys]

I know its weird but I remember trying to make an appt with someone local, and they told me she only sees patients 6 and under. I asked our Dev Ped the same and she usually sees children under 6?? Don't know why? Now we do the Neuropsych yearly to get an accurate picture of his learning style for school, and any other needs he may need accomedations for. I'm still learning everyday!

 

[mechurchlady]

http://www.nldontheweb.org/Dinklage_1.htm

That is so scary a video for me. At times I have had those symptoms and that little girl reminds me of myself as a kid and even as an adult. So disturbing to think that kids go undiagnosed and are misfits in the world, failures because they were not diagnosed.

People tell me that I am so smart but I cannot remember some things but others are sharp in my mind. It hurts when people say you are so smart but you have no friends and are an outcast. It hurts when you are an outcast because you have habits or quarks, how do you tell your friends that youu are 50 and bite or hit yourself in frustration. I see another video posted at this board and it scares me how close I come but cannot be because my friends say I am a hypochodriac and think I have an illness just because I seen it somewhere. I do have low sugars at times, I do have celiac, I do have a lot of problems starting the day I was conceived but for me I have been told too many times that I have faking or copying what I see.


Sorry for hijacking the thread, just this really has me crying upset