MeaganS Posted July 31, 2015 Share Posted July 31, 2015 My almost 7 year old DD has been baffling her entire life. When she was born, she was failure to thrive and didn't eat. Then, when she finally learned to talk, it was with fairly extreme echolalia that got better and better. Her current speech is almost normal, although definitely unique in its style which I can see as a direct result of her echolalia getting more and more complex until she made it her own. It is sort of hard to explain, although she has a large vocabulary, her speech patterns are different somehow. She is also very "young" for her age, seeming less mature than her almost 5 year old sister. She has lots of other little symptoms that have all been getting better and better as she has gotten older. When she was 3 years old she was diagnosed with Autism and a few months ago she was diagnosed with Turners Syndrome. The Turners Syndrome diagnoses actually made more sense than the autism diagnoses now (and is less subjective, as it was a genetic blood test). I never felt like autism fit quite right, but I could never figure out what it was instead. She has a lot of the characteristics of autism but just seems less severe in a lot of ways, but her naivete/social immaturity and rigidity definitely meant there was something. She is doing fine academically, reading above grade level and everything else at about grade level. She was in OT/PT/ST for several hours a week for a few years up until we moved a year ago and I haven't put her back in yet and am not sure if I will or not. ST especially didn't seem to know what to do with her. She obviously has an unusual way of putting words and phrases together, but she does it technically correctly. When researching Turners Syndrome and Autism, I keep seeing that Turners girls often have Nonverbal Learning Disorder, but not necessarily autism. I'm wondering if this would be a better fit than autism for her, especially as she has seemingly outgrown many of the more "autism" symptoms and I'm not sure she would have been diagnosed with autism if we went in today. I know very little about NLD, but it seems to fit her fairly well. This part on a NLD website especially voiced what I've seen with her in math: "Generally NLD children are very good at rote memory activities such as math facts, especially if they are taught auditorily. Other math ability depends on the degree of the impairment, and the method of instruction which is used. Math must always be taught in a very direct and step-by-step fashion. If each step is not specifically taught, the child will not be able to learn how to do the required operation. NLD children commonly make calculation errors, often due to misalignment of columns of numbers." Math like Miquon and Singapore were a total bust for her. She just didn't get it. CLE, otoh, is working wonderfully for this very reason. It is very incremental, fairly algorithmic, and lots of emphasis on memorizing math facts. To this day, though, she misses every problem asking to put three digit numbers in order (like 451, 464, 468, 521). Every. Single. Time. She's almost done with CLE 108 and passes all her tests and quizzes, despite missing half of the allowed points on these ordering problems every time. Anyways, all that to ask for some advice as to whether it is worth getting her further testing at this point. I've had to push for every test we've had done on her so far. Would a neuropsych eval be useful for her? I feel like it would, but since we're homeschooling I'm not sure how. Also because she has these other diagnoses', I can already get her some services if I need to. Basically, can you make an argument for or against getting further evaluations? And do you think I'm way in left field thinking it might be NLD rather than autism? Or both? Is that a thing? Quote Link to comment Share on other sites More sharing options...
kbutton Posted July 31, 2015 Share Posted July 31, 2015 Hopefully someone with direct NLD experience will chime in. No, I don't think you are in left field--there is a lot of overlap with NLD and autism. If you can get the services you need, you might want to stick with what you have--I think NLD is not as widely accepted of a diagnosis. But, you can do work on tailoring services and approaches to have an NLD flair. If you would get more services with an IEP, I would consider jumping through hoops to get one--they may or may not do it on the basis of diagnosis, but they will test for weak areas, may give a learning disability label or some sort, and may provide supports, recommendations, or therapies based on the symptoms they see. I also think it's fine if you proceed with your own day-to-day stuff as if she has NLD and see if you can find recommend approaches that help. I am usually one to promote testing to get good information, but it sounds like it may be unclear in your case regardless, or if it's specific, it might narrow the range of possible therapies you could get if the autism gets changed to NLD or something else. Just some possibilities, but hopefully you'll get additional perspectives. Quote Link to comment Share on other sites More sharing options...
MeaganS Posted August 9, 2015 Author Share Posted August 9, 2015 *bump* I think I fixed it so everyone can see it now. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted August 9, 2015 Share Posted August 9, 2015 Bumping for you as well. If you don't get responses you might change the title a bit. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 10, 2015 Share Posted August 10, 2015 Well a few things. One, it would be good to get an actual psych eval, not just go with developmental ped or neurologist or whatever diagnoses, because those diagnoses aren't giving you the information that actually changes how you TEACH. Two, if you suspect NLD, it's high time you get a neuropsych eval, yes, and by someone who's extremely good with both learning disabilities and ASD, because you're talking about a complex situation. Three, you may have more learning disabilities or other things going on that you realize. Four, NLD and ASD both have issues with pragmatics, theory of mind, etc., so the populations will overlap. Has your SLP done any pragmatics testing? The psych can and the SLP can. Pragmatics testing is *not* definitive at this age, but it can show holes sometimes. A psych could decide to do an ASD *and* NLD diagnosis to give you access to services, depending on what they're seeing. The DSM (the diagnostic manual they use) is NOT gospel or foolproof. NLD isn't even in there right now, is it? With really complex situations, you are looking for evals that help explain what you're seeing, that give you access to services, that help you find holes or areas to work on that you weren't attuned to, to connect with better tools than maybe what you had before to deal with some things, and to get information on how they process, and (if you're lucky) to clear the air and get peace. My ds has a complex situation, and he has seen three psychs. I appreciate the perspectives from each eval, and I realize the DSM is not going to capture him perfectly. But I learned a lot that helped me work with him better. I think in your case, because you've had no psych evals (yes?), because you suspect at least one learning disability, because you have a complex situation, because you're likely to learn things that go beyond a label that will improve how you work with her or help you catch areas you're not yet working on that need to be worked on, a thorough psych eval would be very wise. Quote Link to comment Share on other sites More sharing options...
texasmama Posted August 10, 2015 Share Posted August 10, 2015 One thing to consider is that services, funding, and possibly accomodations later down the road will likely not come with a dx of NVLD. But a dx of autism will get your dd those. It sounds like that dx is already in place, and while you might want to fine tune the dx of LD's as she gets older, I would keep the dx of autism and not look to replace it with NVLD. Personal experience here: I have an almost 15 yo who received services (OT, PT, ST) for about 8 years but did not get a dx of ASD. I am now struggling to parent him in adolescence, and we have had a couple of brushes with a crisis due to puberty. I now wish I had gotten the dx early on and put him on the many years long waiting lists for services. As it is, there is an 8-10 YEAR waiting list for Medicaid waiver for ASD. I don't need help when he's 24. I need help NOW and in the next 4 years. It's too late for us for many services, though he can still get some if he is in crisis, but it might not be too late for you. 2 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted August 10, 2015 Share Posted August 10, 2015 I agree with getting testing. Since she has a medical diagnosis and one of autism you might be able to get your insurance to foot the bill for a private eval. I agree with finding the best of the best in your area for this......and you might be waiting months or more. I can see the point of keeping the autism diagnosis for now just to help you access services. I have 2 complex girls as one has 3 mitochondrial disorders (along with probable shaken baby) while the other has 2 mitochondrial disorders and a Chiari I malformation. Nothing is clear with them but the testing did help, esp. over time. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted August 10, 2015 Share Posted August 10, 2015 NVLD is considered part of the "broad autistic phenotype". Those who start off with a diagnosis of HFA or Asperger's (under the old DSM) often do improve their functioning level over time. They may end up presenting similar to those with a diagnosis of NVLD, but it's all still on the spectrum. In terms of the speech therapy, try to find a SLP who offers a social skills group to work on pragmatic language. My little one is on the interest list for a social skills group but right now they do not have enough kids at a similar speech level and age to hold a group. 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 10, 2015 Share Posted August 10, 2015 You can also have enough ASD symptoms that they will keep the ASD diagnosis and just clarify NLD as part of the mix. Quote Link to comment Share on other sites More sharing options...
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