Question about convergence insufficiency diagnosis

5nomads · May 31, 2015

My ds9 had a vision processing evaluation and we were told he has eye teaming and tracking problems (convergence insufficiency and oculomotor dysfunction). It makes sense because he was reading for shorter periods of time, rubbing his eyes a lot, had a lot of trouble lining up columns to do multi-digit math problems and seems clumsy a lot. But this kid can build/play with legos for hours. I have family who are saying the evaluation must be wrong because it would be impossible to play legos for that long if you are seeing double or having trouble tracking. What has been your experience with this? Do my relatives have a point? Should we seek out a second opinion? Any advice or suggestions?

wapiti · May 31, 2015

Manipulating physical objects like legos with one's fingers, which even come with aspects to help line them up, is very different from writing on a two-dimensional paper with nothing to feel in order to line things up, as you have seen. Numbers on a page do not snap into place if you just get it close enough, LOL. So, no, I do not think your relatives have a point, except to say that the reverse is true - a kid who had great difficulty with legos could possibly have a vision issue or some other type of issue.

Convergence and tracking are among the more straightforward vision issues to test and to fix (BTDT). IIRC, convergence is the one problem for which there is research-based evidence for VT.

On the other hand, if you have doubts about your COVD optometrist, then by all means seek a second opinion.

PeterPan · May 31, 2015

A friend was just telling me her grandma always kicks her butt at putt-putt. The grandma is in her 90s btw, making it very embarrassing. Apparently last time she beat everyone and then afterwards says "Yeah, and I would have scored better if I hadn't been seeing DOUBLE the whole time!" :lol:

Your relatives have no clue what they're talking about, and he's not necessarily seeing double all the time. The brain is incredibly smart and works to resolve the poor convergence. Instead of seeing double, you either have incredible brain drain from constantly trying to resolve the poor convergence (hence the headaches and fatigue) or eventually the brain starts alternating eyes, meaning he gets just one image at a time. It's that shutting off that results in the tracking problems.

If he were seeing double, he could tell you. Instead, it's more likely he has scenarios like I described. Do the therapy for a few months and decide for yourself. My dd had this and her therapy literally CHANGED HER LIFE.

OneStepAtATime · May 31, 2015

Agree with the others. And FWIW, DS can play for hours with Legos but he has heterophoria. One eye tracks out of alignment. It means he can be a bit less coordinated and trying to lign up letter/numbers when writing can be challenging.

Like others have said, though, Legos are awesome. You get close they snap into place. There are clear guidelines for what will line up with what. They are very tactile so you can feel whether they should align. And and on.

I honestly have pretty poor eyesight myself. My vision is fragmenting. I see two distinct images and two offset ghosted images of everything. Glasses can only help so much. But I LOVE legos. I can manipulate them pretty easily. As mentioned, they are tactile, for one thing. As I am working with them I can feel the edges and how they should line up.

If you have doubts get a second opinion. I would not base those doubts strictly on the fact that your son can play with legos for an extended period of time.

Best wishes.

kbutton · May 31, 2015

I agree with what others have said, and it will only get worse (or one eye will turn off/alternate, etc.). with smaller print, longer reading passages, crowded texts. My son had VT for convergence insufficiency last summer, and the results were dramatic. It was like getting occupational therapy at the same time because it helped so much with motor issues and coordination. Swimming got better. He can now participate in normal stuff like throwing a ball back and forth without worrying that he'll get beaned. He can actually hit a ball with a bat--something he could do only if he batted left-handed, which he found awkward for his body but better for his vision.

He has always been a Lego fiend. His vision didn't hamper Legos.

Splash · May 31, 2015

My dd had convergence issues and saw double a lot. During tennis she told me she aimed for the middle ball. Lol. Anyway VT really helped her with focus and stamina

Tiramisu · June 1, 2015

My lego lover and advanced reader had CI and a tracking problem. Her problems were primarily in comprehension of longer readings, writing difficulties, and more math mistakes when she had to start using a textbook with a smaller font. VT helped all of these.

5nomads · June 1, 2015

Thanks, everyone! This is so encouraging. After talking to my relatives I was beginning to wonder if I was crazy. My husband and I really liked the COVD optometrist who did the testing. The neuropsych recommended him. The developmental optometrist's office is 2-3 hours away depending on traffic and he was willing to help us find someone closer to our house for therapy and even suggested asking our insurance about it because he thinks they will sometimes cover it for convergence insufficiency. It was a nice surprise that he wasn't all about the money or trying to push us to do therapy with him. Ds9 read all the magic tree house books during first grade, but he has seemed to be in a holding pattern. He can read harder words, but the smaller print and fewer pictures have been tough for him. He says his eyes are tired a lot. His independent reading comprehension (for 3rd grade books) is not good right now. His writing is horrible and it takes FOREVER to copy anything from a board or textbook. Written math and math facts are way lower than mental math and critical thinking problems. I am hopeful that vision therapy will make a big difference.

PeterPan · June 1, 2015

Definitely VT is going to help some of that. I can't guarantee on the math facts. For that, I'd get him the Fast Facts Math app and use it every day with him reading the problems and answers aloud to get the extra input.

Make sure the VT has him do stuff for visual perception, especially visual memory, by the time you're done. You can do extra by adding in games, puzzles, that kind of thing. That can help, because sometimes visual memory is behind the fact problem. Really though, my ds with math disability is better at his math facts at this age than my dd was without math disability (yes, you read that right), because I'm more OCD about taking those facts and putting them into the app and drilling them. His overall number sense is messed up, so he can't tell me that 60 comes after 59 (that happened last night, we were working on rounding). But at least he's getting snappy on his computation facts! Ronit Bird plus that FF Math app.

5nomads · June 1, 2015

Definitely VT is going to help some of that. I can't guarantee on the math facts. For that, I'd get him the Fast Facts Math app and use it every day with him reading the problems and answers aloud to get the extra input.

Make sure the VT has him do stuff for visual perception, especially visual memory, by the time you're done. You can do extra by adding in games, puzzles, that kind of thing. That can help, because sometimes visual memory is behind the fact problem. Really though, my ds with math disability is better at his math facts at this age than my dd was without math disability (yes, you read that right), because I'm more OCD about taking those facts and putting them into the app and drilling them. His overall number sense is messed up, so he can't tell me that 60 comes after 59 (that happened last night, we were working on rounding). But at least he's getting snappy on his computation facts! Ronit Bird plus that FF Math app.

Does the Fast Facts Math app have a timer? We've been using xtra math and he gets frustrated when he doesn't go fast enough to beat the teacher. He seems to remember more when we do math facts orally when he is jumping on the trampoline or some other physical activity. He scored 97 percentile for math on the MAP (untimed computer adaptive) test at his charter school last year in 2nd grade. But he was struggling to keep up on the timed math facts drills. Some of that is the dysgraphia (because all his math drills at school were pencil and paper tests) and probably processing speed? Does VT improve processing speed? He scored 9th percentile for symbol search and 16th percentile for coding on the WISC.

Some of his trouble with reading comprehension is the SCD, but hopefully the VT will allow the actual decoding to be easier so he can focus on the meaning and we can spend our time working on inference and those types of things that are difficult for him.

One more question, are visual memory and working memory connected? Would VT help working memory or is that something an OT would help with?

kbutton · June 2, 2015

Does the Fast Facts Math app have a timer? We've been using xtra math and he gets frustrated when he doesn't go fast enough to beat the teacher. He seems to remember more when we do math facts orally when he is jumping on the trampoline or some other physical activity. He scored 97 percentile for math on the MAP (untimed computer adaptive) test at his charter school last year in 2nd grade. But he was struggling to keep up on the timed math facts drills. Some of that is the dysgraphia (because all his math drills at school were pencil and paper tests) and probably processing speed? Does VT improve processing speed? He scored 9th percentile for symbol search and 16th percentile for coding on the WISC.

Some of his trouble with reading comprehension is the SCD, but hopefully the VT will allow the actual decoding to be easier so he can focus on the meaning and we can spend our time working on inference and those types of things that are difficult for him.

One more question, are visual memory and working memory connected? Would VT help working memory or is that something an OT would help with?

I can't tell you if VT will help processing speed, but my other son (who hasn't done VT, but may be there at some point), has processing speed in the single digit percentiles. That lone is its own challenge! He's my non-ASD son. Our COVD said that copying can absolutely be something that is caused by CI--I think it depends on what skills they are struggling with. (You mentioned that up thread.) My slow processor does better when he has some movement breaks--it's like it jump starts his brain. We try to play some simple speed games (Count Battle app) to get the wheels turning.

We REALLY like Inference Jones for inferencing if you need a suggestion. Critical Thinking Company sells it. We wish they'd make more books in the series. Your son sounds very bright. In our state, those math scores on the MAP would qualify him for gifted services.

Neither of my 2e kids have ever been fast with math facts, but they are extremely accurate. I think my older one had a perfect score on his Terra Nova in 2nd grade with math computation. But his time math drills were disastrous. I have opted to not worry about it, but work on it when we can.

5nomads · June 2, 2015

I can't tell you if VT will help processing speed, but my other son (who hasn't done VT, but may be there at some point), has processing speed in the single digit percentiles. That lone is its own challenge! He's my non-ASD son. Our COVD said that copying can absolutely be something that is caused by CI--I think it depends on what skills they are struggling with. (You mentioned that up thread.) My slow processor does better when he has some movement breaks--it's like it jump starts his brain. We try to play some simple speed games (Count Battle app) to get the wheels turning.

We REALLY like Inference Jones for inferencing if you need a suggestion. Critical Thinking Company sells it. We wish they'd make more books in the series. Your son sounds very bright. In our state, those math scores on the MAP would qualify him for gifted services.

Neither of my 2e kids have ever been fast with math facts, but they are extremely accurate. I think my older one had a perfect score on his Terra Nova in 2nd grade with math computation. But his time math drills were disastrous. I have opted to not worry about it, but work on it when we can.

Just looked up Inference Jones and it looks great! Have you tried the Reading Detective books also by Critical Thinking Company? It says inference is one of the things they work on in that book too. I might give them a try after Inference Jones. How long does it take to do a lesson of Inference Jones? How much time should I set aside for it and how many days each week?

Ds9 is bright, but inconsistent. He was always in the top reading group and math group at school (went to a foreign language immersion charter school for 1st and 2nd grades until we moved last summer and started homeschooling in our new state), but they usually only test for gifted in K and 3rd and he was homeschooled for K and we moved before 3rd. His teachers were good about sending him different more challenging homework (they used Singapore Primary Mathematics US Edition and would send home intensive practice problems instead of the usual workbook). But they were starting to get annoyed when we left because he was doing so poorly on the math drills and would turn in homework without showing his work or not writing the answer to the word problem in a complete sentence. He was starting to have trouble reading the longer passages and answering some of the comprehension questions. He was supposed to write a summary each night about what he had read (they were required to read for 20 minutes each night in English and then 15 minutes in the foreign language) and his summaries were always really short and sloppy but would take him almost an hour to write down. When I asked how long the homework was supposed to take and mentioned how long he was spending on the summaries, his teacher said he wasn't putting forth enough effort and just needed to focus and try harder because it shouldn't take him that long since he knew the material.

He took the MAP 3 times each year for English and Math and scored in between 79-97 percentile. He would do great one season and then scores would drop a lot and then come back up. His lowest score of 79 was in the fall right after summer break. Plus one of his teachers said the cut off is usually 98th percentile when we asked about gifted testing. I'm not sure if that was true or if they just didn't want to spend the time and money on testing. We decided to do neuropsych testing this past thanksgiving when we were half way through the school year and still struggling with writing and math drills and comprehension and one Sunday School teacher suggested he had ADHD and a family member said she thought he had Asperger's/ASD. He's such a complex kid! I'm glad we have names for what we have been seeing (SCD, dysgraphia, and provisional ADHD combined type, provisional because none of his teachers from the charter school ever suggested he had any ADHD symptoms and he seemed to have visual processing, sensory processing and possible auditory processing challenges so the psych asked us to get evals for all those things first to see if it was one or all of those things causing the inattention and impulsivity). But I wish we were past all the evals and therapy and didn't have to deal with all the insurance and scheduling stuff. We live over an hour away from all these places that provide therapy so I'm trying to figure out what I can do at home on my own to save money and time and what we can do in the van traveling to and from all these upcoming appointments.

Do you allow your kids to use a calculator or times table chart to do multi-digit multiplication or long division? What types of things do you use to improve their math drill times when you can? We've been trying more oral math drills and doing the longer multiplication or division problems on the whiteboard so the numbers are larger and I can scribe for him when his hand hurts or gets worn out or he doesn't line up the numbers correctly because he made one of the digits too big or small. I'm so grateful to be able to "talk" to other parents who have been doing this longer than me. Thanks so much for your time and help!

PeterPan · June 2, 2015

Don't want to be intrusive, but you know that SCD is a controversial diagnosis, right? It's a new label and basically ASD minus repetitive behaviors. If your ds is kissing the spectrum, you might not have even noticed the behaviors yet to realize them. They might not have dug hard enough and it might be that over the long run you'll get to the ASD label.

Anyways, that's how my ds presents, with ADHD-combined that turns into seeming extremely focused and non-ADHD in an academic setting. When you pair giftedness with ADHD and ASD, that's what you get. It's really hilarious, because I have *2* private psychs affirming the ADHD but the school psych says well no because the inattention didn't flag on the computer test, only the impulsivity. The impulsivity was crazy high and the inattention in the normal range. The ASD-specialist psych says OF COURSE it was, because he was INTERESTED in doing a game on the computer! So you get a gifted kid who kisses the spectrum in school and his ADHD isn't showing so much. Misplaced attention, not total lack of attention. ;) But then the school SLP1 tests ds for pragmatics (not interesting, haha) and comes out saying yeah, definitely ADHD. :lol: Then school SLP2 does an observation for an hour with him in a classroom and goes hey, I can't see ANY symptoms of ASD or ADHD. He went in and lectured a K5 class on the faces of a cube, but oh no she can't see any symptoms. :lol: This is the kind of cursory examination and stupidity we're dealing with. They don't THINK. They look at one teeny tiny parameter and expect it to be there for all kids or they deny service. Gifted kids especially get shafted with this. :glare:

You mentioned he's clumsy a lot and now you're adding that he kisses the spectrum. Has he had an OT eval yet? Sounds like it's time. Maybe find an OT who specializes in ASD or who does neurofeedback (or both!). It would help with the sensory, catch maybe some things you haven't found yet. The neurofeedback can help the ADHD. My dd had her first session last week, and she said it made her feel, for about 3 hours, like she thought meds would feel. Wild. Some OTs will do Interactive Metronome. We've had a few people do IM and come back saying their single digits processing speed kids got up to mid-30s. That's where my dd is, and it's functional. So if you could either get IM or do metronome work yourself using Heathermomster's homework, it might be worth the effort. We also have annecdotal feedback from Jenn here on the boards that neurofeedback symptomatically improved her ds' processing speed. But on the IM, we've had several people come back with actual evidence in psych testings. But to go from mid-30s to something higher, that I can't promise. Also, the psych in town who does Cogmed says *sometimes* Cogmed will bump processing speed. Cogmed is research-based and known to improve ADHD symptoms DRAMATICALLY. I would do the OT first and then Cogmed. That's my hit list for my dd and what we're trying to do this summer, sigh.

Sorry, that was totally blunt on the ASD stuff. Maybe just think of it as kissing the spectrum and just deal with what you see (the inferences, the EF, etc.). I think sometimes our kids who are they are and it's the DSM that's the problem. :coolgleamA: The reading issues I think are EF. I found some research indicating that extremely high scores on the BRIEF (an EF survey co-authored by the psych we used) are directly correlated to autism diagnoses on the ADOS. In other words, extreme ADHD expresses as ASD. They aren't saying that, but it is. With 12 subtypes, it's not the only way to get there. I'm just saying you are seeing the ADHD and the EF (executive function) deficits that go with it. I got the comprehension kit ($90, oy!) for levels 3 and 4 of Barton. Lots and lots of types of graphic organizers. I was blown away. I'm sure they're not unique, but they're so intentional. For EVERY CONCEPT that they wanted to explore (inferences, cause effect, you name it) they use a graphic organizer. So to me, with the issues your ds is having, I'd be busting out some graphic organizers. You can also get Kidspiration or Inspiration software and use it together. You're going to have to do this WITH him. He's NOT going to be able to see the structure on his own.

So read up more on executive function and stop paying the school any mind. Their gig is to deny services. How else do you explain idiots who sit in meetings saying "I'll saying it's ADHD if someone else will..." :lol:

kbutton · June 2, 2015

Just looked up Inference Jones and it looks great! Have you tried the Reading Detective books also by Critical Thinking Company? It says inference is one of the things they work on in that book too. I might give them a try after Inference Jones. How long does it take to do a lesson of Inference Jones? How much time should I set aside for it and how many days each week? We did one per week. If his comprehension is a bit wonky, I would try to determine what seems to be the hang-up. My son didn't do so hot on the "schooly" comprehension exercises, but they were, quite honestly, stupid. Sometimes the adults in the house had to guess what the curriculum wanted for an answer. Once my parents were here, Four adults couldn't come up with an answer to one of the questions! So, I judged his comprehension via discussion. Inferencing is one of the harder comprehension skills and not completely there for kids this age anyway. So, you have time to work on something else and come back to inferencing later if you need to. Inference Jones needs to be done together at first, and then maybe he can do it alone, and you can go over it completely with him. Don't do the electronic version--it will make it hard to see what he's struggling with. The grade levels do not matter since reading is a skill he is good at. The level of inferencing is NO DIFFERENT between grade levels, it's just the length and reading level of the passages.

Ds9 is bright, but inconsistent. He was always in the top reading group and math group at school (went to a foreign language immersion charter school for 1st and 2nd grades until we moved last summer and started homeschooling in our new state), but they usually only test for gifted in K and 3rd and he was homeschooled for K and we moved before 3rd. His teachers were good about sending him different more challenging homework (they used Singapore Primary Mathematics US Edition and would send home intensive practice problems instead of the usual workbook). But they were starting to get annoyed when we left because he was doing so poorly on the math drills and would turn in homework without showing his work or not writing the answer to the word problem in a complete sentence. He was starting to have trouble reading the longer passages and answering some of the comprehension questions. He was supposed to write a summary each night about what he had read (they were required to read for 20 minutes each night in English and then 15 minutes in the foreign language) and his summaries were always really short and sloppy but would take him almost an hour to write down. When I asked how long the homework was supposed to take and mentioned how long he was spending on the summaries, his teacher said he wasn't putting forth enough effort and just needed to focus and try harder because it shouldn't take him that long since he knew the material. Such a familiar story, lol! You really are describing the 2e ASD kiddo as OhElizabeth has said. We had a very similar story in private school, though they weren't as good at challenging him. We use SM US edition, and the IP is our go-to work text. Looking at things from several angles really helps my son solidify things. The slow work is processing speed and such. There are some great talks on processing speed on the Bright Not Broken podcast (Coffee Klatch radio network). You can find it archived online as well if you don't do podcasts.

He took the MAP 3 times each year for English and Math and scored in between 79-97 percentile. He would do great one season and then scores would drop a lot and then come back up. His lowest score of 79 was in the fall right after summer break. Plus one of his teachers said the cut off is usually 98th percentile when we asked about gifted testing. I'm not sure if that was true or if they just didn't want to spend the time and money on testing. We decided to do neuropsych testing this past thanksgiving when we were half way through the school year and still struggling with writing and math drills and comprehension and one Sunday School teacher suggested he had ADHD and a family member said she thought he had Asperger's/ASD. He's such a complex kid! I'm glad we have names for what we have been seeing (SCD, dysgraphia, and provisional ADHD combined type, provisional because none of his teachers from the charter school ever suggested he had any ADHD symptoms and he seemed to have visual processing, sensory processing and possible auditory processing challenges so the psych asked us to get evals for all those things first to see if it was one or all of those things causing the inattention and impulsivity). But I wish we were past all the evals and therapy and didn't have to deal with all the insurance and scheduling stuff. We live over an hour away from all these places that provide therapy so I'm trying to figure out what I can do at home on my own to save money and time and what we can do in the van traveling to and from all these upcoming appointments. I should say that the higher numbers make him eligible here for gifted identification--services are not guaranteed, and I have no idea if charter schools use the same rules. In our school district (and maybe state), once a child is identified as gifted, you don't lose the designation even if scores drop. Inconsistency is pretty typical of 2e kids. I think you will see more things come out of the woodwork to confirm/refine your diagnoses over time. 2e kids sometimes don't seem as different as they really are, especially ASD kiddos, until the late elementary or even middle school years.

Do you allow your kids to use a calculator or times table chart to do multi-digit multiplication or long division? What types of things do you use to improve their math drill times when you can? We've been trying more oral math drills and doing the longer multiplication or division problems on the whiteboard so the numbers are larger and I can scribe for him when his hand hurts or gets worn out or he doesn't line up the numbers correctly because he made one of the digits too big or small. I'm so grateful to be able to "talk" to other parents who have been doing this longer than me. Thanks so much for your time and help!

I do some flash cards or games with my younger one (the slow processor) once in a while. My older son mostly just works on the facts in context. He likes really big multiplication problems, and he actually completes them faster than he does individual facts. (yeah, makes no sense!) My older one uses math fact charts. HIs number sense is good, and he can work out the facts through his number sense--the just don't stick in his memory until he's used them 1000 times. Drills have NOT helped him. We do a lot of stuff together to check reasoning and comprehension. We also have dysgraphia (though fairly mild), so whiteboards are magic.

We brought my son home in third grade. It was a rough (but good) first year, and it's actually gotten better from there. We introduced meds for ADHD this year--once we realized it's not all sensory, and because his impulsivity started going through the roof. He was primarily inattentive before that.

If you think there might be something to OhElizabeth's suggestion that he is ASD in disguise or possibly going to grow into that diagnosis, she and I can help with checklists of symptoms, how to document it. The CDC has the basic DSM description, but there is more to the full-text. I think you could see it at the library. I have not looked at the full text (at least not recently), but the CDC site seems to suggest there are tips and examples that are broader than just the "typical" symptoms that we all hear about. Anyway, you may want to revisit this later for accommodations (you'll want a track record for the SAT, etc.), or you might want to get an IEP at some point (in my state, scholarships are available for therapies if you have an IEP). We thought the repetitive behaviors with my son were only sort of there until we realized that he stims vocally. It sounds like a sound effects department in our house ALL THE TIME. Including when he should be quiet (meds help). The noises are very repetitive and elaborate. He also has some repetitive behaviors he brings out mostly around people he doesn't know well, so we weren't seeing them enough to identify them as such.

One book that I found helpful is Different Minds by Dierdre Lovecky. She talks about 2e kids who have ADHD, ASD, or NVLD. She compares and contrasts there specific struggles and gives strategies for scaffolding. It's dry. It's also been spot-on about my son. The middle of the book is the most practical. http://www.amazon.com/Different-Minds-Children-Asperger-Syndrome/dp/1853029645/ref=la_B001K8FZ5Q_1_1?s=books&ie=UTF8&qid=1433253996&sr=1-1

I also agree that you probably need to do some graphic organizers or other thinking exercises. It's really revealing, and the glitches in the thinking really are the key to opening up the world for these kids. Misunderstanding of simple, obvious things can often be their Achilles' heel. We found The Reader's Handbook to help with some of this. We bought it to help my son understand how writing is structured (he reverse engineers everything in order to understand it). We've used the 6-8th grade version (starting in 4th grade--we went with the level closest to his reading ability), so I can't speak for the others. It's very inexpensive used on Amazon, and it's full of graphic organizers you sketch out as go along.

Anyway, welcome, and please come back. It's a friendly board. We'll be glad to talk things out, regardless of what diagnosis you find most appropriate for your son.

Tiramisu · June 2, 2015

OhE, your description of your ds sounds like you're describing me, but I'm not hyperactive or impulsive. I'm hyperfocused and inattentive. How do you like that? I think my mom is the same. I was gifted in school, and I over-compensate by obsessively planning my homeschooling and coop teaching. Otherwise, I'm a mess. I put our new electric kettle on the stove and turned on the gas last week. Dh bought a new glass electric kettle to replace it. I warned him it might not last long and he said he thought about that. He's had to replace our dishes and a few French presses from me accidentally knocking them into things. But he never seems to mind. :)

One psych I talked to thinks the hyperfocused type of ADHD (tha Dr. Amen talks about) is just ADHD with OCD.

wapiti · June 2, 2015

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PeterPan · June 2, 2015

OhE, your description of your ds sounds like you're describing me, but I'm not hyperactive or impulsive. I'm hyperfocused and inattentive. How do you like that? I think my mom is the same. I was gifted in school, and I over-compensate by obsessively planning my homeschooling and coop teaching. Otherwise, I'm a mess. I put our new electric kettle on the stove and turned on the gas last week. Dh bought a new glass electric kettle to replace it. I warned him it might not last long and he said he thought about that. He's had to replace our dishes and a few French presses from me accidentally knocking them into things. But he never seems to mind. :)

One psych I talked to thinks the hyperfocused type of ADHD (tha Dr. Amen talks about) is just ADHD with OCD.

I think the problem is the DSM lagging behind the research, not our kids. I think we have to deal with exactly what we see and worry less about the labels. It's getting honest about what we're seeing (or beginning to see what OTHER people see) that's the hard part.

And yes, wapiti nails it that terms actually have diagnostic criteria. Since OCD is a stepping stone label to ASD, I really don't see the distinction anyway. It just goes back to the whole point, that if you get one label in the alphabet soup and go THANK GOD IT'S NOT ASD, you're really missing it.

We see kids on the boards all the time go through evals at 6, 10, and 14 or something similar and the progression is something like ADHD, OCD (or bipolar), and finally ASD. Part of it is they're looking at behaviors that they can blow off at 6 that become a lot more divergent and apparent at 10 or 12, as the peers pull away and the gifted child's ability to mask is surpassed. You also have gender differences there in presentation.

Psych 3 with ds put it an interesting way. Rather than asking what your label is, ask how severe it is and what support you need. If you're seeing symptoms, no matter what the label, provide the support. The ASD levels in DSM5 are about support. I just don't think it's this strong line of yes ASD, no ASD. It's more like things are going on and more and more are going on till it gets to the point where you slide over to the other label. And the whole issue there is SUPPORT.

At least that's the way I'm seeing it.

PeterPan · June 2, 2015

Btw, everything you listed was executive function. To push over to ASD you need to see pragmatics issues and repetitive behaviors, especially the pragmatics. Right now they'll take repetitive behaviors and tics alone and push them down to OCD. I mean, it's really dorky the way they break it all up into component symptoms and add label after label for each symptom. None of that is genetically determined at all, which is why we have all this confusion. ASD has no less than 12 subtypes according to researchers, but psychologists approach it totally symptomatically. You can have kids who are ASD by the ADOS who have normal pragmatics scores. You can have ADHD kids with pragmatics issues as high as ASD. It's a total crock. Now they've partitioned off just the pragmatics and said hey, we can't notice your repetitive behaviors, so let's partition THAT off and call it something! So the psychs are making a tick list of symptoms and it has NO GENETIC CORRELATION AT ALL. It's all just what symptoms they happened to notice.

In other words, the DSM isn't REALITY. It's just them trying to label symptoms. REALITY is your kid and dealing with what's in front of you. Maybe eventually the DSM will catch up.

Tiramisu · June 2, 2015

I may be jumping into the wrong spot in this conversation LOL, but FWIW, hyperfocus is not at all how I would describe the obsessive component of OCD that I have seen. The obsessions and compulsions I see in OCD are born of a very serious, petrifying fear - I don't think I can accurately describe how scary the fears seem to be. While OCD obsessions as a sort of hyperfocus seem to be a common stereotype (such as when we joke about OCD), it's not something I'd expect to hear from a professional.

It's true that OCD can sap attention, whether or not to a level of ADD, but that's another matter...

Interesting that you point that out. Because I've become increasingly disappointed at this particular psych. She's young, true. But she made a serious assumption about my youngest having seen her for five minutes and not speaking with her at all. Dd was confused about why we were there and too scared to talk. Other professionals I've dealt with have always recognized that children can be nervous their first time visiting and take it in stride.

She's also pushed me to have me continue with ADHD meds after a disastrous trial and when every other specialist we've consulted thinks it's contraindicated. My ped who has known dd for years and the new therapist were in strong disagreement at her approach.

PeterPan · June 2, 2015

Misu, are you stuck continuing with that psych? Is it for evals or therapy? Do you have options?

wapiti · June 2, 2015

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Tiramisu · June 2, 2015

Btw, everything you listed was executive function. To push over to ASD you need to see pragmatics issues and repetitive behaviors, especially the pragmatics. Right now they'll take repetitive behaviors and tics alone and push them down to OCD. I mean, it's really dorky the way they break it all up into component symptoms and add label after label for each symptom. None of that is genetically determined at all, which is why we have all this confusion. ASD has no less than 12 subtypes according to researchers, but psychologists approach it totally symptomatically. You can have kids who are ASD by the ADOS who have normal pragmatics scores. You can have ADHD kids with pragmatics issues as high as ASD. It's a total crock. Now they've partitioned off just the pragmatics and said hey, we can't notice your repetitive behaviors, so let's partition THAT off and call it something! So the psychs are making a tick list of symptoms and it has NO GENETIC CORRELATION AT ALL. It's all just what symptoms they happened to notice.

In other words, the DSM isn't REALITY. It's just them trying to label symptoms. REALITY is your kid and dealing with what's in front of you. Maybe eventually the DSM will catch up.

We have EF issues, sensory, anxiety, and a bit of obsessiveness of the relatively benign variety without compulsions. No pragmatic issues, no repetitive behaviors, no communication problems (verbal or non-verbal). Some social anxiety, which has been confusing the social issues for one, but otherwise all of us can easily make and keep friends. Depending on the child, some weaknesses in emotional regulation. That part is the toughest for me to deal with, especially during flares of anxiety. As far as ASD goes, when I look at the criteria, it seems we have the side dishes but lack the main dish.

PeterPan · June 2, 2015

This is an interesting way to put it. I've been (extremely) busy trying to address our problem from a relatively alternative perspective (immune/infectious/genetic issues) but certainly, when my ds's difficulties were at their very worst last summer, not long after the sudden onset, the NP we went to see for CBT was very concerned that the "real" problem was ASD. I can see why the NP was thinking that because ds's in-office behavior was different from his usual self. Now a year into this, it's easy to see not just the overlap of symptoms but how a whole subset(?) of ASD could involve roots in extreme levels of anxiety much like OCD. (ETA, for example, telling ds to get into bed immediately without doing his special step routine might as well be like asking him to jump off a cliff into the grand canyon. But what if there were more communication issues such that I didn't get that? What would that "look" like?) And then there's the whole other ball of wax, of trying to distinguish between compulsions, tics, repetitive behaviors and sensory needs :tongue_smilie:

I'm having one of those weeks where the more I understand, the less I realize I know... the less is that is really known.

Or that one of the subtypes of ASD *is* people who get into it via the gut/immune route.

wapiti · June 3, 2015

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wapiti · June 3, 2015

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5nomads · June 3, 2015

Don't want to be intrusive, but you know that SCD is a controversial diagnosis, right? It's a new label and basically ASD minus repetitive behaviors. If your ds is kissing the spectrum, you might not have even noticed the behaviors yet to realize them. They might not have dug hard enough and it might be that over the long run you'll get to the ASD label.

You mentioned he's clumsy a lot and now you're adding that he kisses the spectrum. Has he had an OT eval yet? Sounds like it's time. Maybe find an OT who specializes in ASD or who does neurofeedback (or both!). It would help with the sensory, catch maybe some things you haven't found yet. The neurofeedback can help the ADHD. My dd had her first session last week, and she said it made her feel, for about 3 hours, like she thought meds would feel. Wild. Some OTs will do Interactive Metronome. We've had a few people do IM and come back saying their single digits processing speed kids got up to mid-30s. That's where my dd is, and it's functional. So if you could either get IM or do metronome work yourself using Heathermomster's homework, it might be worth the effort. We also have annecdotal feedback from Jenn here on the boards that neurofeedback symptomatically improved her ds' processing speed. But on the IM, we've had several people come back with actual evidence in psych testings. But to go from mid-30s to something higher, that I can't promise. Also, the psych in town who does Cogmed says *sometimes* Cogmed will bump processing speed. Cogmed is research-based and known to improve ADHD symptoms DRAMATICALLY. I would do the OT first and then Cogmed. That's my hit list for my dd and what we're trying to do this summer, sigh.

Sorry, that was totally blunt on the ASD stuff. Maybe just think of it as kissing the spectrum and just deal with what you see (the inferences, the EF, etc.). I think sometimes our kids who are they are and it's the DSM that's the problem. :coolgleamA: The reading issues I think are EF. I found some research indicating that extremely high scores on the BRIEF (an EF survey co-authored by the psych we used) are directly correlated to autism diagnoses on the ADOS. In other words, extreme ADHD expresses as ASD. They aren't saying that, but it is. With 12 subtypes, it's not the only way to get there. I'm just saying you are seeing the ADHD and the EF (executive function) deficits that go with it. I got the comprehension kit ($90, oy!) for levels 3 and 4 of Barton. Lots and lots of types of graphic organizers. I was blown away. I'm sure they're not unique, but they're so intentional. For EVERY CONCEPT that they wanted to explore (inferences, cause effect, you name it) they use a graphic organizer. So to me, with the issues your ds is having, I'd be busting out some graphic organizers. You can also get Kidspiration or Inspiration software and use it together. You're going to have to do this WITH him. He's NOT going to be able to see the structure on his own.

So read up more on executive function and stop paying the school any mind. Their gig is to deny services. How else do you explain idiots who sit in meetings saying "I'll saying it's ADHD if someone else will..." :lol:

Yes, I know he may get an ASD label later on. We had him evaluated at a place that specializes in gifted and 2e and 2 of the 3 people who discussed his results/wrote his report thought he met the criteria for ASD. The one who had spent the most time with him was the one who said he was too outgoing, affectionate, and engaging to get an ASD diagnosis. We're going to get the OT evaluation and APD screening/evaluation and send those, as well as the COVD evaluation results, back to the psych and see what they think at that time. They were pretty thorough on the testing. They did the WISC IV, WJ III achievement test, ASBI, Beery VMI, D-KEFS, NEPSY II, GORT, TOWL, WCST, and something else that I am forgetting, plus about 25 pages of paperwork/questionnaires for my husband and I to fill out. Since he is homeschooled and we didn't have any teachers to fill out the forms they asked me to fill out everything and my husband to fill out another copy so they could see if my husband and I saw differences in him at "school time" vs the rest of our family time. We didn't get the clear cut answers we were hoping for, but we got a good starting place.

I've been reading up on ADHD and EF difficulties. Smart not Scattered has been helpful as well as Bright Kids Who Can't Keep Up. I'm about to start Superparenting for ADD. Delivered from Distraction has been life changing for my husband. He is actually getting ready to start the process of getting himself tested for ADHD because he met so many of the criteria on the checklist in that book (I could only relate to a couple of the things, but he checked off almost all of the over 100 things listed). He was identified as gifted in K and again in 2nd when his family moved, but his mom pulled him out of the gifted program in 3rd grade because she said he wasn't finishing his homework until 10 PM most nights and she was tired of bugging him to get it done or focus or pay attention more. She said the work wasn't hard for him, but he could never seem to get it done in a reasonable amount of time. He's the poster kid for outside the box, creative thinker. He uses graphic organizers all the time. That is so not how my brain works. I am having to relearn things in a new way to try to help my kids learn. I am a sit down and read the book, answer the questions and take the test kind of learner. I'm having to learn all this multisensory stuff.

The psych recommended more project based learning and that we continue to homeschool him if possible so that we can teach to his strengths while sneaking in the skill work for his weaknesses (plus it allows us to be a lot more flexible about therapies when we can do them during the day while others are in school). We're also looking for a mother's helper so I can get more one on one time with each kid (right now ds9 and I are doing an hour of school before his siblings wake up and some more one on one when his sisters nap after lunch and dh helps after dinner). How much should a good OT evaluation cost?

The only reason I have been paying attention to what the schools are doing is because I wonder if they would actually allow the accommodations the psych recommended. And I have looked into the charter schools that give you up to $1000 per semester per student. It could be nice to have that money for extracurriculars like swimming, gymnastics, martial arts, or music lessons. I keep hearing about how great music lessons are for EF, and working memory. I've also heard violin can be good for gross and fine motor skills and crossing the midline. Have you had any experience with music being helpful for your kids issues? Here's an article a relative sent me on some of the benefits of music

http://mic.com/articles/108022/science-just-discovered-something-amazing-about-what-childhood-piano-lessons-did-to-you?fb_action_ids=10206203005931616&fb_action_types=og.shares

5nomads · June 3, 2015

We brought my son home in third grade. It was a rough (but good) first year, and it's actually gotten better from there. We introduced meds for ADHD this year--once we realized it's not all sensory, and because his impulsivity started going through the roof. He was primarily inattentive before that.

If you think there might be something to OhElizabeth's suggestion that he is ASD in disguise or possibly going to grow into that diagnosis, she and I can help with checklists of symptoms, how to document it. The CDC has the basic DSM description, but there is more to the full-text. I think you could see it at the library. I have not looked at the full text (at least not recently), but the CDC site seems to suggest there are tips and examples that are broader than just the "typical" symptoms that we all hear about. Anyway, you may want to revisit this later for accommodations (you'll want a track record for the SAT, etc.), or you might want to get an IEP at some point (in my state, scholarships are available for therapies if you have an IEP). We thought the repetitive behaviors with my son were only sort of there until we realized that he stims vocally. It sounds like a sound effects department in our house ALL THE TIME. Including when he should be quiet (meds help). The noises are very repetitive and elaborate. He also has some repetitive behaviors he brings out mostly around people he doesn't know well, so we weren't seeing them enough to identify them as such.

One book that I found helpful is Different Minds by Dierdre Lovecky. She talks about 2e kids who have ADHD, ASD, or NVLD. She compares and contrasts there specific struggles and gives strategies for scaffolding. It's dry. It's also been spot-on about my son. The middle of the book is the most practical. http://www.amazon.com/Different-Minds-Children-Asperger-Syndrome/dp/1853029645/ref=la_B001K8FZ5Q_1_1?s=books&ie=UTF8&qid=1433253996&sr=1-1

I also agree that you probably need to do some graphic organizers or other thinking exercises. It's really revealing, and the glitches in the thinking really are the key to opening up the world for these kids. Misunderstanding of simple, obvious things can often be their Achilles' heel. We found The Reader's Handbook to help with some of this. We bought it to help my son understand how writing is structured (he reverse engineers everything in order to understand it). We've used the 6-8th grade version (starting in 4th grade--we went with the level closest to his reading ability), so I can't speak for the others. It's very inexpensive used on Amazon, and it's full of graphic organizers you sketch out as go along.

Anyway, welcome, and please come back. It's a friendly board. We'll be glad to talk things out, regardless of what diagnosis you find most appropriate for your son.

I would love to see a checklist of symptoms and how to document them. Would the neuropsych eval we just got not count for a track record for accommodations because he didn't get the ASD label but SCD? My library has Different Minds so I will be reading that soon. Do you think something like 6 trait writing would help him organize his thoughts/ideas and help him get them on paper? What did/do you use to work around/on the dysgraphia? I will try to find that Reader's Handbook to see if I can make it work for us. Thanks for sharing your advice and experiences

kbutton · June 3, 2015

I would love to see a checklist of symptoms and how to document them. Would the neuropsych eval we just got not count for a track record for accommodations because he didn't get the ASD label but SCD? My library has Different Minds so I will be reading that soon. Do you think something like 6 trait writing would help him organize his thoughts/ideas and help him get them on paper? What did/do you use to work around/on the dysgraphia? I will try to find that Reader's Handbook to see if I can make it work for us. Thanks for sharing your advice and experiences

If you are happy with the SCD diagnosis, I don't know if you need more than that, unless you are pursuing grant-specific or state-specific scholarships that are tied to a different diagnosis. It depends if it gets you what you need in order to work with your child--accurate understanding, access to appropriate therapies and information, and the right accommodations. We pursued an IEP to get an autism-specific scholarship in our state (we already had a spectrum diagnosis--PDD-NOS under the old criteria). You can find out more about accommodations for standardized tests on the high school board, but generally, an IEP or Section 504 is a nice way to obtain extra time, but you may need more than that; it's just our first step. Another thing is that you should document the ways in which you accommodate at home (typing, vs. written, time and a half on tests, etc.).

I don't know much about 6 trait writing. We are still trying to figure out the best way "in" with writing. In my son's case, it helps to look at the structure of good writing and to spend a lot of time on the thinking process--labeling things, etc. He has trouble coming up with abstract words for describing things succinctly. His sentence-level writing is fantastic if he's combining sentences and the like.

We are getting proficient at typing around here, and then we are planning to use Inspiration software for outlining, mindmapping, etc. We do some oral work to avoid fatigue. He is actually doing a little better with handwriting than he was--less fatigue, more stamina, more automaticity.

Symptoms--I would start with these two lists:

https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5(ASD.Guidelines)Feb2013.pdf

I like the second link because it gives broader examples of the repetitive behaviors and such--my son's repetitive behaviors are not ones that typically come to mind. The public school psych was very stuck on what is or isn't a repetitive behavior or obsessive interest. (Serial obsessive interests are also possible.) I would've loved to have this list when meeting with him. His ideas were so outdated.

5nomads · June 3, 2015

If you are happy with the SCD diagnosis, I don't know if you need more than that, unless you are pursuing grant-specific or state-specific scholarships that are tied to a different diagnosis. It depends if it gets you what you need in order to work with your child--accurate understanding, access to appropriate therapies and information, and the right accommodations. We pursued an IEP to get an autism-specific scholarship in our state (we already had a spectrum diagnosis--PDD-NOS under the old criteria). You can find out more about accommodations for standardized tests on the high school board, but generally, an IEP or Section 504 is a nice way to obtain extra time, but you may need more than that; it's just our first step. Another thing is that you should document the ways in which you accommodate at home (typing, vs. written, time and a half on tests, etc.).

I don't know much about 6 trait writing. We are still trying to figure out the best way "in" with writing. In my son's case, it helps to look at the structure of good writing and to spend a lot of time on the thinking process--labeling things, etc. He has trouble coming up with abstract words for describing things succinctly. His sentence-level writing is fantastic if he's combining sentences and the like.

We are getting proficient at typing around here, and then we are planning to use Inspiration software for outlining, mindmapping, etc. We do some oral work to avoid fatigue. He is actually doing a little better with handwriting than he was--less fatigue, more stamina, more automaticity.

Symptoms--I would start with these two lists:

https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5(ASD.Guidelines)Feb2013.pdf

I like the second link because it gives broader examples of the repetitive behaviors and such--my son's repetitive behaviors are not ones that typically come to mind. The public school psych was very stuck on what is or isn't a repetitive behavior or obsessive interest. (Serial obsessive interests are also possible.) I would've loved to have this list when meeting with him. His ideas were so outdated.

I guess I'm just not sure what difference it would make. SCD and ASD seem really similar to me. I'm hoping we will get more info after the OT eval and APD eval (still waiting to hear if our insurance will cover it). What kind of accommodations would he get with an ASD diagnosis that he wouldn't have with a SCD, SLD writing, DCD (dysgraphia), and ADHD diagnosis (and possibly sensory processing disorder or dysfunction of sensory integration or whatever the current label is for sensory issues, depending on what the OT says)? Even if I got a private psych to give him an ASD label, wouldn't it be hard to get a ps to also give him that label and services since he scores above average on most tests and can be affectionate and look testers in the eye, etc? Would the ASD label open up more services from insurance or school or? I'm just trying to figure out what's the advantage of the ASD label over all the labels he just received?

5nomads · June 3, 2015

So I think after reading that second link that he could have ASD. This kid flaps his arms when he runs, loves to spin and loves his patterns/routines. I just think he functions well enough that people don't notice those things. NO one suggested he had any issues the whole 2 years he was in public charter school. I'm not very hopeful that he would get an ASD diagnosis because he is better at looking people in the eye when they are talking to him because we have worked on that and he loves hugs (probably sensory seeking behavior) and is affectionate and outgoing (although socially awkward and misses other people's social cues so has a difficult time making/keeping friends). He has a cousin who is a couple years older than him and she has been tested 3 times (once as a toddler, again at the beginning of school and then a couple years ago) and both the private/insurance-covered psych and the public school psych said she couldn't have ASD because she looks them in the eye and is affectionate and "too social" to fit the label. She has a LOT more issues than my son that scream ASD to a lot of people around her and still didn't get the label. Maybe when they test her in middle school it will show up? Anyway, how do you find someone who will look past the affectionate/look you in the eye stuff to give the ASD label. I could argue my kid meets the criteria (and I understand a lot better why the people who didn't meet him wanted to give him the label). But I don't know that he would actually get it. We have already paid for the private eval. Should we just wait until after the OT and APD evals and then send in the reports to the private neuropsych testing place and ask about ASD again? Should we attempt to get him tested through the school district or through our insurance? Would those places have experts in ASD? Or would we have to pay out of pocket again? Should we just wait until middle school and test again after doing VT, OT and whatever else is needed? What measurable difference would we see if he had the ASD label now instead of his other labels? Thanks for helping me think through this!

PeterPan · June 3, 2015

Remind me, because I'm being doltish, what are your goals here? You want to put him in a school or you want him at home? If you want him at home, you're done and don't need another psych eval. If you want to put him in school, you'll take your current paperwork (which was private or school?) and they'll generate the IEP.

Really, I would think the ps or charter would give him the same stuff in the IEP with the SCD as with the ASD. It's not what the label is on your IEP. It's what you get IN the IEP. Our district, honest to goodness, admits full and well they have kids with ASD with no IEP. The ONLY reason they fiddle with the IEP is if they want to give SERVICES for the issues. So that goes back to the question, what are you trying to make happen? Kbutton and I have IEPs for our dc, because in our state there's a disability scholarship that requires an IEP. It was a helpful process and I learned a ton, don't regret that at all. But I'm just saying I had a REASON.

I don't know who did your evals, but it sounds like you got a ton of helpful info. I'd slow down and process what you got. If he hasn't had an OT eval, it's time. Around here you can get one for $80. Seriously. And you can get an APD screening at the university (not private but still fine) for $35. So if you have indications of APD, get that done. Did your psych do an APD screening? What's going on there to make you wonder? You should be seeing issues with background noise or something. The SPD (sensory processing disorder) you're describing with the flapping, etc. *can* cause issues with how they process auditory like with figure/ground. My dd comes THIS CLOSE to failing the APD screening but doesn't. She has sensory problems, and I had an audiologist tell me you put her on meds and those scores will go back up to normal. So I'm saying if the APD symptoms are mild, it MIGHT be just due to sensory or a relative weakness. If it's going to cost you $350 for the private APD screening (which is what it costs here), personally I'd get the OT eval first and see where you're at. At $35, I was cool with getting it done for my dd. At $350, that was just too much to spend for a negative, kwim?

Geodob has some therapy ideas he's been researching for what he terms auditory convergence. It's on my want to try list for dd, hehe. Again, just another free idea to try to spread out your expenses if you don't have reason to think you have a clinical issue going on there. The OT eval with someone good with sensory may change your life. Put your money there, that's my two cents. I don't see why you need another psych eval right now.

PeterPan · June 3, 2015

Remember, the school is not a medical doctor and they're not there to provide cadillac level services. They are there to acknowledge something that is severe enough that it impedes the dc's ability to receive an education. That's IT. So if your gifted, kissing the spectrum, this and that, rather social dc goes in and can FUNCTION IN A CLASSROOM and receive an education, you're going to have a rough climb there asking for an IEP. It has to affect his ability to receive an education, and at our school, in our STATE, they're willing to leave without an IEP people who are ASD but can function in a mainstream classroom.

I'm not saying it should be that way, because I agree that's an absurd thing to say the issues are not affecting his ability to learn. I'm just saying they're there to deny services, not to help you. So questions like what does it change, what services are you wanting in the IEP, what are you trying to make happen, these are good questions, kwim?

If you want things that are because you're a thorough parent, because you see relative weaknesses and discrepancies, because he might be able to go into the classroom and function but he's not functioning OPTIMALLY, that's your problem as a parent. That's when you pull them out and homeschool. Shouldn't oughtta be that way, but that's the discrimination of the giftedness.

kbutton · June 3, 2015

So I think after reading that second link that he could have ASD. This kid flaps his arms when he runs, loves to spin and loves his patterns/routines. I just think he functions well enough that people don't notice those things. NO one suggested he had any issues the whole 2 years he was in public charter school.

No one ever suggested my son was on the spectrum either. Our psych works with 2e kids, and she was the first to suggest it (she did her assessments piecemeal, whatever bothered us the most, she worked up). We thought that was odd since our son was friendly and looked people in the eye, etc. And in our mind, he wasn't as severe (for lack of a better word) as other kids that we knew to be spectrum-ish. Fast forward a month or so, and we heard a speaker talking about 2e kids on the spectrum (at a homeschool convention). It was like hearing our son described (and several other kids we knew, some of whom have since been told they are probably on the spectrum). Then, he grew into it more, and there are some qualities about him that just persistently stay the same in spite of good forward progress and maturity. Most of them are good qualities, such as his childlike enjoyment of many things that other kids would have outgrown--he still continues to progress in his interests, he just doesn't lose the old ones or consider them too babyish very quickly.

I'm not very hopeful that he would get an ASD diagnosis because he is better at looking people in the eye when they are talking to him because we have worked on that and he loves hugs (probably sensory seeking behavior) [lol, yes, probably] and is affectionate and outgoing (although socially awkward and misses other people's social cues so has a difficult time making/keeping friends). He has a cousin who is a couple years older than him and she has been tested 3 times (once as a toddler, again at the beginning of school and then a couple years ago) and both the private/insurance-covered psych and the public school psych said she couldn't have ASD because she looks them in the eye and is affectionate and "too social" to fit the label. She has a LOT more issues than my son that scream ASD to a lot of people around her and still didn't get the label. This is where i would get up in the professional's business and say, "Where does the DSM say that the criteria this child meets for ASD gets cancelled out by these abilities?" But I am kind of past being nice to people with outdated ideas and tired of seeing parents not get the help they need and tired of the general public being fed misinformation by professionals who won't stay current. :-)

Maybe when they test her in middle school it will show up? Anyway, how do you find someone who will look past the affectionate/look you in the eye stuff to give the ASD label. I could argue my kid meets the criteria (and I understand a lot better why the people who didn't meet him wanted to give him the label). But I don't know that he would actually get it. We have already paid for the private eval. Should we just wait until after the OT and APD evals and then send in the reports to the private neuropsych testing place and ask about ASD again? Should we attempt to get him tested through the school district or through our insurance? Would those places have experts in ASD? Or would we have to pay out of pocket again? Should we just wait until middle school and test again after doing VT, OT and whatever else is needed? What measurable difference would we see if he had the ASD label now instead of his other labels? Thanks for helping me think through this!

I think you should use the information you have now and see if it does what you need it to do. If you are paralyzed at home by rigid behavior, then I would seek an ASD diagnosis after carefully feeling out some specialists. The school can't diagnose ASD--it needs to be a doctor or psychologist. You will be able to access lots of what you need with the SCD diagnosis. I don't know if that will cover behavioral therapy that could work with rigidity and such. However, finding appropriate behavioral intervention (and sometimes social intervention) for gifted kids is tricky. So, maybe you'd want to seek an ASD diagnosis only if it gets you broader insurance coverage or something for a specific therapy you cannot get otherwise. In our case, we have an HSA, so everything is subject to a high-deductible. Once that is met, they don't fuss at much of anything. I don't know about other plans.

Like OhElizabeth said, you can skin the cat many different ways, and that's okay. You just need to find the way that works best for your family. My son qualified for his IEP on the basis of social skills, not academic criteria. They were also willing to give him extra time on tests, some help with multiplication facts (but that's a "freebie" they threw in--not something that would've triggered an IEP), and help with composition. We were able to demonstrate that he met state criteria for ASD and that it did affect him educationally via social skills and composition. You can probably get all that with SCD. In our case, it was imperative that we get an IEP for autism because it came down to scholarship money (we use it for social skills and composition tutoring). We would not have qualified for the scholarship for learning disabilities because my son doesn't have a specific learning disability. So, it had to be on the grounds of autism. You have more leeway because you have specific diagnoses that the school can target with specific therapies, including the social component.

5nomads · June 3, 2015

Remind me, because I'm being doltish, what are your goals here? You want to put him in a school or you want him at home? If you want him at home, you're done and don't need another psych eval. If you want to put him in school, you'll take your current paperwork (which was private or school?) and they'll generate the IEP.

I'm still trying to figure out what my goals are. We had planned to move to CA for 1 year to help my FIL who was diagnosed with bile duct cancer on his liver and was told he had about 15 months to live. The plan was to homeschool and work on the writing and math facts, then move back to our old state and put kids back in foreign language immersion charter school. FIL's cancer miraculously shrunk. There is still a small mass, but it hasn't changed in the past 6 months. This is good news. It also means I am having to reassess my plans and goals. Now we are not sure how long we will be in CA. Hopefully this procedure they are getting ready to do will get rid of the cancer completely. If it doesn't then he may need to go back on chemo. It's been a crazy year. Our current paperwork is from a private office.

I don't know who did your evals, but it sounds like you got a ton of helpful info. I'd slow down and process what you got. I am trying to process what we got. We got a 39 page report. It's very readable, it just wasn't what we were expecting to hear/find.And some of the tests seemed to contradict others. The psych recommended OT eval, COVD vision eval, and APD eval. I am trying to find a SIPT certified OT near me. I called and emailed 4 places that were on the list of SIPT certified providers and only one of them got back to me. The guy on the phone sounded confused and didn't know what to do with me. I said I wanted an evaluation for sensory issues and dysgraphia/coordination issues. He first wouldn't give me a price or tell me what tests they would do. Then said it would cost over $400 if I was private pay and I should really just get my insurance to cover it. I called insurance the first time and they said they only cover OT if you have an ASD label. I called back a couple days later and that person from insurance said to try to get a referral from the pediatrician. Faxed/emailed the report to ped and waiting to hear if she will give us the referral. If he hasn't had an OT eval, it's time. Around here you can get one for $80. Seriously. And you can get an APD screening at the university (not private but still fine) for $35. So if you have indications of APD, get that done. Did your psych do an APD screening? What's going on there to make you wonder? He had trouble on one of the tests where you retell the story you just heard. He did the first couple no problem and then said he "didn't hear that one" for the last story the psych asked about. He made commission errors on the auditory attention test of the NEPSY. He was in the 26 percentile for understanding directions. They said since there can be overlap between attention issues and auditory processing issues we should get him evaluated. You should be seeing issues with background noise or something. The SPD (sensory processing disorder) you're describing with the flapping, etc. *can* cause issues with how they process auditory like with figure/ground. My dd comes THIS CLOSE to failing the APD screening but doesn't. She has sensory problems, and I had an audiologist tell me you put her on meds and those scores will go back up to normal. So I'm saying if the APD symptoms are mild, it MIGHT be just due to sensory or a relative weakness. If it's going to cost you $350 for the private APD screening (which is what it costs here), personally I'd get the OT eval first and see where you're at. At $35, I was cool with getting it done for my dd. At $350, that was just too much to spend for a negative, kwim? If the pediatrician will refer us to the audiologist for the APD evaluation then it would only cost us a $30 copay.

5nomads · June 4, 2015

Remember, the school is not a medical doctor and they're not there to provide cadillac level services. They are there to acknowledge something that is severe enough that it impedes the dc's ability to receive an education. That's IT. So if your gifted, kissing the spectrum, this and that, rather social dc goes in and can FUNCTION IN A CLASSROOM and receive an education, you're going to have a rough climb there asking for an IEP. It has to affect his ability to receive an education, and at our school, in our STATE, they're willing to leave without an IEP people who are ASD but can function in a mainstream classroom.

I'm not saying it should be that way, because I agree that's an absurd thing to say the issues are not affecting his ability to learn. I'm just saying they're there to deny services, not to help you. So questions like what does it change, what services are you wanting in the IEP, what are you trying to make happen, these are good questions, kwim?

If you want things that are because you're a thorough parent, because you see relative weaknesses and discrepancies, because he might be able to go into the classroom and function but he's not functioning OPTIMALLY, that's your problem as a parent. That's when you pull them out and homeschool. Shouldn't oughtta be that way, but that's the discrimination of the giftedness.

The psych recommended that we continue homeschooling. I guess I just would like to keep my options open and the difficulties with writing and social stuff would make a public school environment far from ideal. I am sad that a door has been closed. I am exploring the at home charter option here in CA because they give you $1,000 per child per semester in exchange for you meeting with a certified teacher once each month and taking standardized tests at the end of the year. I already have most of the curriculum and materials I want to use next year, so almost all of that money could potentially go to extracurriculars. I am less concerned about an IEP than accommodations in general, maybe a 504 plan would be fine. If I could get something like swimming or gymnastics or martial arts or music lessons for free from the charter funds to supplement the therapies, then that would be great. But I wouldn't want to sign us up for that if they would be unwilling to allow him to have extra time on tests or access to a computer and keyboard for essays later on. I'm not afraid of oversight because we work our butts off, but I am concerned that they may have unrealistic expectations and make our lives more stressful. I should probably stop dreaming about this "perfect" at home charter option that so many have told me about and just focus on the other stuff and be glad we don't need to deal with the school system for the time being.

5nomads · June 4, 2015

I think you should use the information you have now and see if it does what you need it to do. If you are paralyzed at home by rigid behavior, then I would seek an ASD diagnosis after carefully feeling out some specialists. The school can't diagnose ASD--it needs to be a doctor or psychologist. You will be able to access lots of what you need with the SCD diagnosis. I don't know if that will cover behavioral therapy that could work with rigidity and such. However, finding appropriate behavioral intervention (and sometimes social intervention) for gifted kids is tricky. So, maybe you'd want to seek an ASD diagnosis only if it gets you broader insurance coverage or something for a specific therapy you cannot get otherwise. In our case, we have an HSA, so everything is subject to a high-deductible. Once that is met, they don't fuss at much of anything. I don't know about other plans.

Like OhElizabeth said, you can skin the cat many different ways, and that's okay. You just need to find the way that works best for your family. My son qualified for his IEP on the basis of social skills, not academic criteria. They were also willing to give him extra time on tests, some help with multiplication facts (but that's a "freebie" they threw in--not something that would've triggered an IEP), and help with composition. We were able to demonstrate that he met state criteria for ASD and that it did affect him educationally via social skills and composition. You can probably get all that with SCD. In our case, it was imperative that we get an IEP for autism because it came down to scholarship money (we use it for social skills and composition tutoring). We would not have qualified for the scholarship for learning disabilities because my son doesn't have a specific learning disability. So, it had to be on the grounds of autism. You have more leeway because you have specific diagnoses that the school can target with specific therapies, including the social component.

My ds also gets great enjoyment out of things others his age consider too babyish to be worth their time. I didn't connect those dots before. Can ADHD also make kids seem immature?

We have an HMO type of insurance so if they cover it then I only have to pay a copay, but if they don't then I have to pay for all of it. We are waiting to see if the pediatrician will give us a referral for OT, VT, and an APD eval. I will also ask about any other services they offer for SCD behavioral/social stuff. Thank you!

Tiramisu · June 4, 2015

My ds also gets great enjoyment out of things others his age consider too babyish to be worth their time. I didn't connect those dots before. Can ADHD also make kids seem immature?

We have an HMO type of insurance so if they cover it then I only have to pay a copay, but if they don't then I have to pay for all of it. We are waiting to see if the pediatrician will give us a referral for OT, VT, and an APD eval. I will also ask about any other services they offer for SCD behavioral/social stuff. Thank you!

Yes, ADHD can make kids seem immature. It can make them develop more slowly socially. I think there may be a diagnosis of ADHD with social delay. This came up when I asked our psych about the possibility of ASD.

PeterPan · June 4, 2015

Yes, ADHD can make kids seem immature. It can make them develop more slowly socially. I think there may be a diagnosis of ADHD with social delay. This came up when I asked our psych about the possibility of ASD.

Yes, they can say ADHD with social delay or they can tip it over and call it ASD. Either way you have to deal with what you see, and in some cases the challenges and symptoms and treatments are identical. The ADHD does not *have* to result in social delays. It's this gray area as it starts to meld over into ASD.

We've had some people say their psychs tried to discriminate by saying if they put the kids on meds, would the kids notice and be able to act upon what they were seeing, or were they missing it even with the meds. I'm not sure that's a perfect line, but it's curious to ponder. Pragmatics testing in the younger years isn't totally reliable (as in you can have average scores and still be diagnosed ASD with the ADOS), but in later years that's another way to discriminate. An SLP can run the pragmatics testing, which is why the major diagnosing places are usually a full team, not just a psych, because they can gather all that info at once. So you could ask your psych upfront if he'll be running pragmatics testing and who he recommends for it if he's not.

Here's that article I was reading on pragmatics in ASD. Kind of ugly. Assessing Pragmatic Language in Autism Spectrum Disorder

To me, I'm going back to what info can I get that's actionable, kwim? To me it's not helpful to say oh, it's just social delay with ADHD, don't worry, not ASD. That doesn't tell me where the relative deficits are and WHY we're having the problems and what we can do about it. Similarly, it's not helpful to have someone say oh, it's ASD and generalize about what's happening, either, kwim? When you get these breakdowns like pragmatics testing, then you can target and say ok, THIS is the area where the breakdown is occurring.

Next psych, you could get a total different label. Four years from now, you could get a label a step up. You have to dig and figure out where the glitches are and what you can do as an action plan. If you start into theory of mind and social skills training and the dc doesn't GET the non-verbals (can't read the body language and cues and just is totally misinterpreting and not getting it), then it's not merely that they're not attending, kwim? So that's what I'm doing is trying to figure out how far we have to back up to get the click and get us moving forward.

And I think, Misu, iirc, your issues you're frustrated on are partly self-regulation, right? In the school system (whose mindset I seem to be partially adopting, mercy), they partition that off to the OT. But there's a bit of wisdom to the school approach, in that they actually think concretely about what they're trying to SOLVE rather than getting hung up on the label. The issue is always what is the problem and what steps do we need to take. Goal and ways to get there. Then you pick the provider who can help you achieve those goals. The label is just what makes us feel better (or worse) about the process and maybe get funding. :scared:

kbutton · June 4, 2015

My ds also gets great enjoyment out of things others his age consider too babyish to be worth their time. I didn't connect those dots before. Can ADHD also make kids seem immature?

Yes, I think so. I think it comes across differently sometimes, but I can't really put my finger on it to describe it. As a total aside, my son (11) and his same grade friend next door (almost 12), spent a good chunk of a recent afternoon pretend fishing. They filled up a recycling bin with muddy water, made fish hooks out of hangers, sticks, and string, and threw rocks with tape loops on them into the bin. They were happy as clams and just wanted to see if they could actually catch stuff with their improvised hooks. It was the neurotypical (but probably gifted) kid's idea, lol! OTOH, I doubt this friend would've suggested this activity to his other more neurotypical friends. I think my son is his friend that he can do the messy, silly, stuff with and actually be quite serious and intentional about the silly and the mess (they are very intentional in their play).

kbutton · June 4, 2015

Yes, they can say ADHD with social delay or they can tip it over and call it ASD. Either way you have to deal with what you see, and in some cases the challenges and symptoms and treatments are identical. The ADHD does not *have* to result in social delays. It's this gray area as it starts to meld over into ASD.

We've had some people say their psychs tried to discriminate by saying if they put the kids on meds, would the kids notice and be able to act upon what they were seeing, or were they missing it even with the meds. I'm not sure that's a perfect line, but it's curious to ponder. Pragmatics testing in the younger years isn't totally reliable (as in you can have average scores and still be diagnosed ASD with the ADOS), but in later years that's another way to discriminate. An SLP can run the pragmatics testing, which is why the major diagnosing places are usually a full team, not just a psych, because they can gather all that info at once. So you could ask your psych upfront if he'll be running pragmatics testing and who he recommends for it if he's not. My son is somewhere in the middle on meds. He is more self aware and more self-conscious on meds, and not in a bad way. He still misses social stuff. It definitely doesn't fix the ASD, but it does give him more ability to see what's going on. These kids, even ADHD kids, sometimes know what they should do, but they cannot see it except in hindsight. My son sees a lot in hindsight, but the presentation in real time just doesn't flip the right switches. Even with his rigidity, he sees later on how he could've been different, but the next time, he's still rigid again. It gets better and resolves more quickly in the future, but it's still very much like there are landmines all around, and he's the only one that didn't get issued a mine detector.

Here's that article I was reading on pragmatics in ASD. Kind of ugly. Assessing Pragmatic Language in Autism Spectrum Disorder

To me, I'm going back to what info can I get that's actionable, kwim? To me it's not helpful to say oh, it's just social delay with ADHD, don't worry, not ASD. That doesn't tell me where the relative deficits are and WHY we're having the problems and what we can do about it. Exactly. Similarly, it's not helpful to have someone say oh, it's ASD and generalize about what's happening, either, kwim? I assume you mean generalize as a way to dismiss the concern, not act on it, pass it off as "well, kids on the spectrum do this, what do you want me to do about that?" When you get these breakdowns like pragmatics testing, then you can target and say ok, THIS is the area where the breakdown is occurring. Very much agree with this too.

Next psych, you could get a total different label. Four years from now, you could get a label a step up. You have to dig and figure out where the glitches are and what you can do as an action plan. If you start into theory of mind and social skills training and the dc doesn't GET the non-verbals (can't read the body language and cues and just is totally misinterpreting and not getting it), then it's not merely that they're not attending, kwim? So that's what I'm doing is trying to figure out how far we have to back up to get the click and get us moving forward.

And I think, Misu, iirc, your issues you're frustrated on are partly self-regulation, right? In the school system (whose mindset I seem to be partially adopting, mercy), they partition that off to the OT. But there's a bit of wisdom to the school approach, in that they actually think concretely about what they're trying to SOLVE rather than getting hung up on the label. The issue is always what is the problem and what steps do we need to take. Goal and ways to get there. Then you pick the provider who can help you achieve those goals. The label is just what makes us feel better (or worse) about the process and maybe get funding. :scared: I do think the school approach is meaningful, but the fact that they often ignore the label makes me think that they aren't going to be as good about finding the right approach to get to the desired goal. Sad to say. And if the end justifies the means so to speak, that could look like a train wreck with some kids.

June 5, 2015

Go see a young progressive Opthamologist that employs an Orthoptist (specialist). For ex. Dr. Aaron Miller of Houston Eye Associates. http://www.houstoneye.com/houston/aaron-miller-m-d.htm My9 year old dd has convergence insufficiency, very high astigmatism & dyslexia characteristics. My dd used an eye tracking software ordered by Dr. Miller that you can do at home for est. $60-80 & after 3 mos has corrected her eye tracking & is a milder issue now. dd still has high astigmatism so a slight degree rotation(1-7 degrees in her lenses can drive her eyes bonkers.) The fluorescent lighting in classrooms is a big problem. My dd is willingly & independently reading text & jumped to 3rd grade reading level & she is finishing 2nd. dd has always devoured pictures in over 20000 books since a baby so that helped tremendously cause her comprehension is off the charts. Thankfully!

June 5, 2015

Go see an Orthoptist Ex. http://www.houstoneye.com/houston/jorie-jackson-c-o.htm

Orthoptists are key members of an ophthalmology team whose goal is to provide evaluation, understanding, and treatment to children and adults with disorders affecting visual function, eye movements, and eye alignment. As the orthoptist, Ms. Jackson works as a liaison between Dr. Miller and his patients and as such, assists in the explanation and carrying out of their individual treatment plan.

The Well-Trained Mind Extended Guide

Question about convergence insufficiency diagnosis

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