Gifted Issues Discussion homepage Forums Twice Exceptional Competing diagnoses - help prioritizing

Apologies for the length – the more assessments we get, the more confused I am about what’s going on and how to proceed.

DS7.5 tested HG+ at age 6 on the WISC (GAI 148, full scores here) with a 41-percentile gap between VCI/PRI and processing speed. On the advice of polarbear and others here we followed up with the tester, who felt the gap was not significant, merely an effect of his tuning out at the end of the test. We kept an eye on DS and when last spring he became increasingly anxious, particularly at school despite a sweetheart teacher and low-demand curriculum, we began probing deeper as well as starting therapy for the anxiety.

We spoke to his sister’s neurologist, who ordered an EEG (normal) and an audiology screening (significant figure-ground and attentional difficulties) and diagnosed ADHD. Given his WISC scores and anxiety, she said we should on no account consider medication; rather start Fast ForWord for the auditory issues, start lifestyle interventions (Omega-3s, protein, martial arts, etc.), get him happier in school and see her in November. All of that has been on target; we are seeing good results from Fast ForWord, from the lifestyle changes, and from increasing structure and reducing stress in our home.

At about the same time, DS’s therapist recommended a full neuropsych screening with his partner. He initially felt that DS was exhibiting “ADHD-like behaviors fueled by anxiety” and mitigating the anxiety would reduce the behaviors. DS scored high for anxiety on the intake questionnaires, no other conditions.

Unfortunately, DS and the neuropsych disliked each other on sight; I literally felt him stiffen when she opened the door. The first half of the first session (the Woodcock-Johnson Test of Achievement) was nigh-disastrous, with (I learned later) his answers scornfully given while standing up surfing on her office chair, or leaping from her desk to her couch. When that didn’t irritate her enough he apparently started licking things in her office. While we still don’t have the report, he put up scores in the 83rd-98th percentiles; nothing that would let us apply for DYS, unfortunately. She brought him out after 45 minutes, I reset his attitude (one cheese stick, one run around the building), and they completed the rest of the session and the second session more successfully. She decided she did not need a third session or a repeat of intelligence testing to complete her assessment.

At our post-testing meeting, the neuropsych told us he was incredibly defiant, extremely oppositional, highly rigid and on the brink of school refusal, and that we should be prepared to meet with the district behavioralist in the next few days to work out a plan. (This has not happened; it has been a month and our single behavioral issue has been his muttering “that sucks” when the whiteboard broke down.) That he absolutely needs private school intellectually, but “they wouldn’t keep him a week.” That he is showing severe ADHD symptoms, this is unquestionably the umbrella issue and we should immediately see a psychiatrist about medication. That he also has a severe fine-motor deficiency and we should immediately consult the OT to whom she refers. His low WISC score was coding (8) which does seem to fit; she sees no other signs of a processing speed issue and says the fine motor deficit explains it fully. To my eye his writing is slow, awkward, and at the low end of normal among his peers, though he has repeatedly said it doesn’t hurt when questioned.

This week we saw her recommended OT -- who says he does not have a fine-motor deficiency at all, nor does he have ADHD, so we should certainly not medicate. She feels he has a visual-motor integration issue plus sensory-seeking behavior, and after 4-6 months of twice-weekly sessions to make him more comfortable in his own skin, the ADHD-like symptoms will be mitigated and they will release him to the developmental optometrist they work with for likely vision therapy. I am having a hard time understanding how this could so differ from the neuropsych’s assessment the previous month; on the other hand, the OT did achieve a much better rapport with DS. We are going ahead with OT next week, as well as finishing up Fast ForWord.

OT also suggested we begin the intake process with her sleep consultant and nutritional consultant. I cannot see bringing in yet more specialists at this point to muddy the waters. We’re already overflowing with diagnoses and recommendations, none of which agree.

Meanwhile, after several attempts to refocus the therapist, and several diagnosis-of-the-week guesses from him (ADHD! defiance! social skills! victim of bullying! needs prizes from the dollar store as an incentive!), we are ending our sessions with him. When I sat in last week at his request, it became clear that after four months, he has no respect from or authority with DS and many of the oppositional behaviors that so alarmed the neuropsych (especially leaping around on the furniture) were permitted or encouraged in their therapy sessions.

As we drag DS through all these assessments, we are lucky that his second-grade teacher is excellent (both rigorous and creative) and he is doing quite well, if not to the level his WISC scores might suggest. Above average, but not noteworthy. He skips out at the end of the day, is creating comic books “instead of writing” in Writer’s Workshop, and has several close friends and a large pack of buddies. When I volunteer in the school he seems happy and well-behaved, and the anxiety seems to be significantly reduced. Still, he complains that school is boring and there are some tears around homework. There is no gifted program or tracking before middle school so any accommodations will have to be individually negotiated. At home, he is happy, loving, and cheerful as long as not pushed outside his comfort zone. We still see unexpected explosions once or twice a week, but we seem to be on a clear upward trend.

While we are not opposed to medication, the gap between the professionals saying “on no account medicate” and “medicate immediately” is troubling; every expert seems to be sure their issue is the foundational one and must be addressed posthaste.

We are waiting for the full neuropsych report and then her letter to the school to initiate the 504 process. I would like to build in intellectual differentiation (she suggested math) as well as fine motor, auditory, and any other necessary accommodations. But it is feeling like there are too many potential issues to address simultaneously without driving the poor kid crazy. Where would you start?

I'd start by looking at which behaviors seem GLOBAL rather than situational.

THEN-- of the diagnoses related to those seemingly global issues-- which "fit" and were obtained under, well, reasonably legitimate circumstances?

Following that, does that fit what your gut tells you?



It sounds like the initial diagnosis (right or wrong) and the interventions you're using are working.

Yes?

If so, I'd give that more time, myself. Is it anxiety? Or is it ADHD? Well, maybe it's one or the other, and maybe it's asynchrony and OE that he's growing into, YK? In any case, maybe it doesn't matter as long as what you're doing is helping, and that DOES seem to be the case.

It sounds like that gap COULD be nothing-- and that the tester felt that this was almost certainly the explanation.

The rest seems dauntingly non-specific and contradictory, but maybe I'm missing something.


I mean this with all respect-- but-- this sounds actually sort of like normal behavior for a gifted 7yo with some intensity-- what am I missing?


What exactly are you going to get out of a 504 plan? It doesn't sound as though (beyond the initial things that you've been doing with lifestyle mods) you have a lot to go on in terms of the "right" interventions to use.

I'm not understanding what accommodations are going to do in terms of reducing barriers in the classroom. It sounds like aside from his WISC scores and a probable need for additional challenge (which can be tricksy with ADHD/anxiety in the picture, as I'm sure you're aware), he's getting his needs met rather well at this point.

Hi, Elsie.


That is unusual. For elementary-age children, medication is a usual part of ADHD treatment. While it is true that stimulant ADHD meds can make anxiety worse, there are also non-stimulants, some of which may actually reduce anxiety (depends on the kid). More below.


Increasing structure can indeed reduce anxiety.

Can't comment on FastForWord-- an audiologist told us that there is no scientifically proven treatment for auditory processing issues, so I'm skeptical of all of them as a rule.


I don't think I'd rely on the accuracy of those scores, given the way he was behaving during the testing. But I would also say she saw some really unusual behavior. Is that a typical response to stress for him?


It doesn't have to hurt for there to be a problem. In addition, not all writing problems can be explained through fine-motor deficits.


An OT is not qualified to make or rule out a diagnosis of ADHD. And certainly not to give advice about medication. This is a serious, unprofessional over-reach. Personally, I would not use an OT who overstepped in this way.


I am well aware that OT helps for some kids with behavioral issues, but IME this is best used as a second-, third-, or fourth-line defense, not as a starting point. The science behind it is weak and you've already seen the tendency of OTs to explain all issues they see as "sensory" in origin, whether or not this is true.


What kind of therapist is this? Garden-variety talk therapist? And yes, it sounds like this person does not have the expertise you need.

FWIW I am a huge fan of Cognitive-Behavior Therapy and Applied Behavior Analysis as well-targeted, proven means of changing anxious thinking and behavior.


How restricted is the comfort zone? That is, to what extent are his anxieties limiting him or your family?

I ask because IME, catering to anxiety can produce a semblance of peace but not serious long-term gains. This post is getting long, but I can say more about this if you like.


My DS (2E/Asperger's) was really severely anxious at that age; we decided to medicate him for anxiety and he was pretty much transformed. It's not an easy choice, but it's an option. We have found that attention and anxiety are sometimes related (if you can't pay attention, you're anxious because you don't know what's going on; but if you're anxious you miss things because you worry so much that can't pay attention). We ended up medicating for both issues and addressing behavior through ABA and CBT.

We see a developmental pediatrician whom I really trust to work through med options. I would not let the neuropsych make this recommendation; I want to talk to someone for whom prescribing or choosing not to is their major line of work, someone who's seen lots of kids like mine and who does the routine management of complex issues. And I did find one who doesn't automatically recommend meds, which helps me trust her judgment too.


You don't have to do ANYTHING if things are going well. Truly. You are the one who gets to decide if these problems are severe enough that remediating them would improve DS's or your quality of life.

If things are not going well, note what those things are, and choose the one that is most conspicuous first. Are there particular issues to solve at school or home? Things that you've gotten used to "structuring" things at home around to avoid a blow-up, that would be better worked through?

Since you're at a point where the over-arching diagnostic process is this messy, I'd look at the particulars and watch them over time. Keep a notebook. That data is going to tell you more than a professional who has seen him only once.

HTH.

Hi Elsie, I am on my phone and don't have time to fully reply to everything, but wanted to address the OT comment re no fine motor deficiency where the neuropsych had seen an issue. If the neuropsych is suggesting fine motor dysgraphia, she is referring to a neurological connection made in the brain that is used to coordinator fine motor when creating letters and numbers. A child can have fine motor dysgraphia and still have what looks on the surface like an ok OT evaluation. My ds was referred for OT after he was diagnosed with fine motor dysgraphia and his intake OT eval found he had no fine motor deficiencies - which didn't mean he didn't have dysgraphia. What it meant was he had fine motor skills sufficient to allow him to benefit from handwriting OT.

polarbear

Thanks - this is all so very helpful. It is a real relief to hear, for example, that the neuropsych and OT assessments are not necessarily inconsistent.

I am uncomfortable with all these professionals blithely giving advice outside their specialties - the therapist and OT who are sure it's not ADHD, the neuropsych who spends most of her session giving parenting advice. It truly feels like a mess. And everyone wants to talk to me at length about fish oil. Which we're already taking.

I think our goal with the 504 is to codify this year's informal accommodations (FM system, preferential seating, reduced homework or scribing help, anything necessary for fine motor), in case next year's teacher is not such a good fit. Last year his teacher was very kind, but he was seated next to the A/C and later told us he was always guessing what she wanted from him - no wonder he was anxious. The neuropsych believes we can also build in differentiation (ideally a different math program) which it will be tough to get otherwise. He's cheerful and compliant in school but bored, unchallenged and beginning to check out.

It sounds like he licked the neuropsych's couch - very unusual and I would guess quite deliberate. He was certainly trying to annoy her as much as possible (it worked) and "run out the clock" on the assessment. At the break, I told him she had a shelf full of assessments and we could keep coming back every day if necessary until we got what we needed, and he shaped up. She said he was like a different child after the break. (And, it turned out the CBT therapist, in the same office, had been encouraging him to leap around on the furniture to "work out his energy." Completely unacceptable, he knows, but he had been encouraged to do it there.)

Fast ForWord has helped. Perhaps not exactly in the ways they promised - I wouldn't recommend it as an absolute for auditory issues - but it challenges him enough that he's developing new problem-solving strategies and improving his attention. He can follow much more complex directions now; he stops and repeats them under his breath and then chooses the right answer. And it's much-needed practice in working towards a longterm goal.

I saw a great deal of anxiety in the spring. Walking home one day, I asked what he was thinking and he said he was trying to figure out what to do if the sun went supernova. I called the therapist the next day. We have been in a period of high stress (both parents suddenly changing jobs, among other things) and have worked hard to turn that around. With the decline in household stress and increased structure I am really not seeing anxiety from him.

The sudden, disproportionate outbursts of anger and opposition (yelling, sarcasm, slamming doors and throwing stuffed animals) are troubling, but seem to be decreasing. We're working through the Nurtured Heart program. My gut is to end the CBT sessions which are clearly exacerbating bad behavior, continue to talk about how we all have big feelings in this family and we can all work on managing them, and hold off to see if other improvements mitigate this.

He has never been a good sleeper - we have just added melatonin which seems to help him sleep more deeply. Gave him nightmares when he was younger, but this time, so far so good. I may talk to the lifestyle-focused neurologist about whether she thinks a sleep study would help, but I don't need a sleep consultant to do that.

My gut says there's some kind of fine-motor issue. I'm less sure about a vision issue. His ophthamologist pronounced him perfect in August, FWIW, and did an extra convergence exam at my request since I had convergence issues as a child. My one concern - he reads easily several years above grade level yet absolutely refuses to read books that are straight text, as opposed to Captain Underpants-level books with illustrations on most pages. He has no trouble with small type or concentrated text (something like the Marvel Encyclopedia) as long as there's an illustration on the page. This is frustrating to both of us, as he blows through the illustrated books and complains of nothing to read, while rejecting stacks of books because "they don't have any pictures." Yet it feels more like a control issue than vision-related.

Our big global issue is rigidity and I do think it's becoming limiting. Very picky about food - eats a decent variety including many vegetables, but very specific brands/preparations of each. Will detect a different brand of organic cheese stick (unwrapped) or macaroni that is "too straight," and will excuse himself politely from the table and go hungry rather than eat it. Very reluctant to go outside his comfort zone - had a tough time getting him out the door yesterday though we were going out to buy a swingset. Very tough time with transitions. Resists even the most tempting new activity (afterschool robotics class with his two best friends) and then is upset when they have fun without him. As far as DH and I can tell this seems to be about control. None of the assessments seem to have useful insights on this front. I will read up on Applied Behavioral Analysis.

Thanks for your patience as I talk all this out.

Our strategy, in the face of conflicting diagnoses, some of which we've been skeptical of, is to address the issues that affect my child most at home and at school. It sounds like for your situation, that would be the anxiety. It might take a bit of trial and error to find the right approach to the anxiety. In our house, it's been a combination of CBT, LOTS of exercise (like 6-8 hours a week of running to exhaustion), LOTS of parent contact time, and a very regular schedule. 18 months ago, I thought we were on the cusp of asking about medication. I haven't thought of it or talked to the CBT about it in probably 10 months.

We've also had a very different experience with the anxiety depending on the teacher fit. I have learned a lot about my child from the really fantastic teachers. It sounds like you've got a great teacher right now. If you really trust her, and you think she's got a good pulse of your son, you might consider pretty much laying out the story you wrote above here. Ask her her opinion as an educator as to what she thinks your son's biggest challenges are, and what other kids like your son have needed to succeed. Just be sure to dance this side of asking for a second opinion on a diagnosis, which she's be unqualified to give. However, experienced teachers have seen a lot of kids in their day, and the really smart ones can often give a much more holistic sense of the child than the experts who see you child for much less time and over fewer environments.

I've done this twice now, once for each child. It's worked out well for me, but I've not asked the teachers I don't trust. YMMV

I would be skeptical as well.

I recall a (theoretically) qualified professional telling me that although DS had autism, if we parents would only apply time-outs correctly, he'd be fine. Uh, NO.


Just because advice has been given, you are under no obligation to take it. I'd start by placing a veil of skepticism over anything that people said to you that is outside of their knowledge base.

And as geofizz said, look at the actual problems you're trying to solve, not at the causes people are hypothesizing all over the place.


That's a very good plan: get what works onto paper and formalized.

If he needs OT for the fine motor in school, that's probably going to be in an IEP, not a 504.


That's very odd. My feeling is that you're making a good call by ending the relationship with this particular CBT; I would also say that not all of them are like that.


If it stays on the radar as a consistent problem I would definitely look into ABA therapy.


Our DS11 (2e/Asperger's) has both the meltdown/rigidity issue and the strong preference for comics. For a while he read the captions of books instead of the texts, and inferred from those what the texts were about. He can now process text just fine. (FWIW, the Tashi books were a useful pivot for us into more wordy books, as were comics with more text in them per frame, like Asterix.)

I think you are reasonable to look at control issues. At 7 the preference for illustrated stories is not yet worrying, but in a gifted child who clearly can read text, one wonders about it more.


Our DS was like this. We worked on it through ABA, and now he generally eats what we eat, though he still gets anxious about unfamiliar dishes in a new restaurant, etc. I'm sure I've posted about this here somewhere. It wasn't pretty but for us it was a problem worth solving.

How we have dealt with rigidity is tough on everyone in the short term but really works in the long term: you make choices that challenge his narrow limits. (A friend calls this "deliberate sabotage.") You run out of the favorite brand of cheese stick and he has to settle for an alternative. You drive an alternate route. Eventually a rigid but bright child notices that the new way did not kill him, and that he's still okay.


Did they do an ADOS (test for autism spectrum disorders)? Some of what you've written falls along these lines, and ADHD and autism can sometimes easily be mistaken for one another in the high-IQ range. I'm not suggesting that this would be a slam-dunk definite diagnosis at all, but suggesting that it's worth looking at to rule in or out. I would use someone who's seen lots and lots of bright anxious kids both on and off the spectrum, which probably means doing the test at an autism center.

DeeDee

Did the neuropsych do any of the computerized testing for ADHD? Did you fill out any inventories for social skills, attention, or executive functioning and have the teachers do them as well? I don't think a neuropsych or any kind of therapist can observe a kid in one setting and then decide if they ADHD or not.

geofizz - we do trust the current teacher and are scheduled to meet with her in a couple of weeks. We'll definitely ask her thoughts on the biggest challenges. Both parents are now working from home and I've cut my hours which allows an earlier dinner and bedtime, more freeform running on the playground, more downtime with parents after school while DD4 is in preschool.

DeeDee, "deliberate sabotage" is really fascinating. I will read up on ABA (thanks for the link, Portia) and think about when/how to sabotage, without, say, triggering a meltdown right before he has to head off to school. I do now have an excellent anxiety specialist (for myself!) who will give me recommendations when we are ready to look at CBT again.

blackcat - I believe no computerized testing. She administered the Woodcock-Johnson and a number of different tests from the NEPSY. We filled out inventories for ADHD, Asperger's (which came in very low, I believe below the first percentile) and the BASC. No teacher questionnaire as most of the testing was actually completed before the school year started. She suggested following up with a teacher questionnaire and/or classroom observation in late fall - but I am highly nervous about putting her in touch with the teacher given her strong negative feelings about DS. Quite honestly, I am also not inclined to pay her any more money or continue the relationship beyond the report and school letter we have already commissioned.

Taking a deep breath. Of all the professionals involved, I think the neurologist (not neuropsych) and OT had the best connection with DS, and their recommendations are close to what we are now doing. We are having a good school year and I can table the recommendations for vision therapy and medication long enough to see where the current interventions seem to be taking us.

I was given the teacher copies of the inventories and there was never any contact. So just this morning I sent the teacher the BASC in DS's backpack, she'll fill it out and send it back home and i'll give it to the neuropsych. It just seems like the more opinions you get from people who work with your DS on a daily basis, the closer you will get to finding out what deal is.

Also, it sounds like you may want to find a different neuropsych or psychologist and just start over.