Gifted Issues Discussion homepage Forums Twice Exceptional and yet another thread

First, I am actually going on an all-day field trip with my DD's 5th grade class today, so am taking a break from the obsession for a few hours, a least.

The more I read, the more questions I have. These are mostly in reference to ASD, which seems to be a really complicated diagnosis, sometimes. In a sense, this is more of my online journaling because my thoughts are all over the place.

Diagnostic questions:

School counselor suggested a potential motor-planning issue bc DS was irritating his teacher by being slow and clumsy with his (big) binder. This is not the same as a fine-motor issue, correct? School OT administered VIM (I think?) and he was above average. Is motor-planning something we should look at, and is it part of ASD (I don't see it anywhere in DSM). My son does not seem particularly clumsy and in fact has a beautiful baseball swing but he taught himself this via VIDEO GAMES and coaching. LOL

He does struggle a lot with simple things like dressing himself. It takes forever, even when he is motivated.

2) Constipation/encopresis issues, severely delayed full toilet training, nighttime enuresis (improved but not resolved). Not in DSM. ASD symptom?

3) Pragmatic speech issues mostly related to inability to monitor himself appropriately and anticipate others' reactions. EFD or ASD? This one seems to be the most obvious ASD thing...but could be discrete disorder?

4) ADHD (inattentive/impulsive) which never seemed to fully account for behavioral issues. Not hyperactive. Does well one-on-one with or without medication. Extraordinarily distracted by externals.

5) Remarkable ability to learn all there is to know about subject of interest. For instance--baseball. Knows all current info, as well as complete baseball history. It is next to impossible to ask him even very obscure question without his knowing the answer. However--he has not had serial obsessions, really. Unless creative endeavors count.

6) Huge spread between GAI and PSI on the only FSIQ he has ever taken, age 7. However, his IQ has been all over the place, even just the GAI. High at age 5, borderline gifted at 7 (but he was very stressed), high again last year when re-tested for this program (but not as high as it was at 5, by a long shot).

7) Thought of one more: dx'd anxiety disorder. When younger, had what I thought were OCD symptoms (phobias) that lasted a really long time. Terrified of tornadoes, had to process every single "what if?" every night for months, then moved on to childhood cancer. Terrified of alarms (this is getting better) but not clear if it's the sensory overload or anxious thoughts that accompany them. He is still somewhat hypochondriacal and scared of tornadoes but can process this using (homespun) CBT methods and calm himself, now. Deep breathing, guided meditation helped when he was younger.

I am starting to think that he is much more unusual than I realized, having looked at all of this the lens of autism. It's hard for me to conceptualize it because I have mostly just adapted to him and vice versa. I don't really struggle with him, with a few exceptions, mostly when I try to force him to do something (he requires a very conscious approach, which drains my energy). I've largely just stopped doing that because it was futile and caused a lot of negativity in the family. And that was probably a mistake.

Hi, Eco!

Can be. There is no biological test for autism-- lots of people have disagreements about what the boundaries of the condition are, and what the defining traits are (vs. what are traits often seen but not essential to the dx).

My answers/thoughts here are not clinical but come from my experience with DS12 and his providers, and other people with ASD.


Lots of people with ASD have comorbid (co-occurring) issues. Poor motor planning is often in that mix.

Our DS was awful at this stuff until we really worked on it. He will never be an athletic type, but he does OK now.

On the binder: my whole family's relationship to objects and their organization is a bit hinky. It always seems easier to put things down and walk away from them than to put them away. We all struggle with binders and drawers and clutter. No idea if this is "broader autism phenotype" or just "us."


That's an EF issue. We have that too. Standing around in underwear thinking is par for the course.


Many people with ASD have this issue, which often relates to anxiety (holding/control). Once a person has encopresis, it can take a long time to resolve because the bowel stretches and loses sensation.

This makes me feel that you should have a developmental pediatrician or other expert medical provider managing the whole picture.


Could be a discrete disorder, ASD, or some of each. Some evals for ASD include assessment of pragmatic language by a specialist SLP. I recommend this.

Nearly all people with ASD I have encountered have significant EF issues; certainly true at my house. Some doctors will not diagnose ASD and ADHD together because there is so much overlap. Some will; it often depends on insurance coding needs rather than actual diagnostic bright lines.

At age 5, I'd say that autism drove the bus for DS. At age 9, autism and EF. Now at age 12, the EF is the more obvious issue (though social skills glitches remain); most of his IEP deals with EF.


See above. Some clinicians think autism and ADHD are related. Some do not. ADHD can have serious social impacts, which means there is no bright line between the two.


That is typical of the gifted/ASD child. They are often information gatherers with absolutely stunning capacity.


IQ tests can be inconsistent for people with ASD or other social skills impairments, in part because they can rely on skills that don't function "typically" for an ASD person. An ASD person may process images differently-- rather than looking at faces, they notice details of the scene that most people wouldn't, which may lead to "wrong" answers. Being literal can get you points off, as can missing social information in a question.


DS12 has always been like this. Serious weather obsessions related to anxiety about possible disasters.

Homespun or formal CBT is great; we have also chosen to medicate for anxiety, which was life-changing for DS.


Most parents do adapt to their children, and yes, it's hard to see all these patterns unless you are really looking, even if they are noticeably different compared to others. (You don't live in other families, you live in yours.)


I would say, rather, that you've gotten to a phase where you see that it might be strategic to manage it differently than you have in the past.

You are doing a great job of thinking through all these issues.

I hope you enjoy the field trip!
DeeDee

Is the neuropsych exam still upcoming?

You make astute observations and you are thinking carefully about your son's needs and difficulties. I would, however, suggest that instead of playing the game of "is this behavior a symptom of X?" leave it for now to the neuropsych. List and organize all the behaviors and issues that you observe, and present them during the evaluation.

It is sometimes very difficult to tease apart the issues into different diagnoses. The game of "is this ADHD or ASD of EF or fine motor?" is fraught with subtlety and ambiguity.

That being said, I've never experienced an evaluation for either kid that was totally satisfying, sometimes with obvious gaping holes: We took DS to the local university hospital in which a team of 5 faculty evaluators did a comprehensive evaluation. This should be the regional gold standard. The school looked at me with wide eyes amazed I'd gotten him in. It missed the boat big time. It was frustrating a demeaning. But it did get us one accurate diagnosis, which helped us progress on the most difficult issue, but because I'd spent so much time trying to piece together the kid myself, I was very resistant to a few of the other diagnoses. Once we'd progressed on that issue, then a subsequent evaluation (this time by the school, but with a hand picked evaluation team) got us something that seemed much closer to explaining the kid and helping us plan a path forward.

This is a long way around to saying that if you feel you can accurately describe the difficulties, do so, and organize the information in a manner that's easier for the neuropsych (or developmental ped) to consume. Assume that the results of an evaluation will be dissatisfying for a complex kid, take the results that seem most pertinent to your struggles, follow up with evidence based treatment, and proceed. A subsequent evaluation very well may be needed once you've made progress and you have treatment data.

That being said, I know it's hard not to know what's going on and to not have answers. It's natural to seek out answers for yourself when forced to wait. Meanwhile, vent, ask for suggestions here, and enjoy that field trip.

Now to answer your diagnostic questions.


You are correct in identifying that motor planning doesn't have to be fine motor and vice versa. DS has a motor planning disability, and his fine motor testing showed incredible control. His teacher asked 4 times if the results were for the right kid. His handwriting it terrible despite this. The planning problems are at a much more executive level than the fine motor planning tests evaluate. As in, it could be his apraxia/dyspraxia, it could be ADHD (and it could be lack of handwriting education).

And also highly correlated with ADHD.

Some of the boundaries between parts of ASD disorders have been separated out as smaller sub disorders. My DS fits a profile (though I'm still not sure it's accurate) of having social pragmatic communication disorder with no other boxes ticked for ASD. Though, alas, I view his responses on the testing that diagnosed this to have been a consequence of other issues. The treatment for it, however, should be broadly similar, so this label is getting him appropriate (ish) services.

It will be instructive to see how these scores change with time. Make sure to disclose these scores to the neuropsych.

Um, yeah, DS evidently "won" the award this year of having "the most complicated profile in the school." Yeehaw.

I totally agree that I should not attempt to "diagnose" (but it is my nature, and also my profession...to a certain degree). I *think* what I'm doing is trying to prepare myself for what might happen.

Neuropsych is next week. She will work with him either all day or two days, depending on his energy level. She also said she is perfectly willing to give her impressions day of testing, to be followed by report at later date (thank goodness, bc I am so anxiety-ridden).

Yes, I am somewhat familiar with unsatisfying evaluations/treatment. I think I'm also being somewhat triggered by this whole situation--bc it is terribly reminiscent of what happened with my older DS, with a constellation of neurological issues, including a pretty devastating seizure disorder, which proved hard to treat. And resulted in what is almost certainly PTSD (for both of us, actually).


I would take "ish" at this point. To be perfectly honest--I'm tending to lean toward abandoning public school altogether and piecemealing a homeschool plan. I recently saw some photos of my son, just a year or so ago, and had to ask myself--where did THAT guy go? The happy, warm, smiling one. He insists he wants to remain in his program, but I'm likening it to a battered woman who continually returns to her abuser.

There is a *chance* that my use of metaphor is not helpful in communicating with the staff (I have not said anything as ridiculous as that. Yet). :P I'm not sure there is a good placement for DS and also believe that nothing good can happen in school for a miserable child (who does not know he is miserable).

At this point, my focus is on his emotional health (and mine). It's hard to imagine advocating for his educational needs when we are stuck at this level.

"She also said she is perfectly willing to give her impressions day of testing, to be followed by report at later date (thank goodness, bc I am so anxiety-ridden)." This is great. I wish all professionals would do this! We are on week 3 of waiting for report with zero information. Our situation is not emergent but given what you have going on I can understand how difficult it would be to wait for feedback.

I am sending lots of positive thoughts your way. It is clear that your son could not have a better advocate than you.

Thank you so much, I will take any positivity available! This was serendipity, truly, bc the neuropsych is moving out of town and ONLY takes cases where there is 2E going on, at this point. She does work with autism as well, but in a treatment/consultant capacity. She responded to my inquiry very quickly and scheduled the testing immediately. She said "your DS is right up my alley." I couldn't be happier about that. She also did eval for my friend's two 2E boys and they were very impressed.

I am fairly certain she is 2E herself. I'm sure that helps. I *hate* dealing with professionals who have no bedside manner (i.e. don't understand the needs of parents for empathy and communication). I hope you get your report soon!

I sympathize. Both of my children went through crazy diagnostic runarounds for different (physical) mystery issues which turned out to be ultimately never produce satisfying answers. This makes me sound slightly nuts, but in one case the symptoms were very obvious and distressing (leading other parents to ask about them, even) and in the other, professionals red-flagged him repeatedly even though we weren't very concerned. Both my husband and I were so frustrated by the time, money, and emotional energy that went into chasing these demons (in one case, there was also a lot of medication)...now we are kind of wary and burned out on the diagnosis dance. DH especially.

Nope, it makes you sound fairly typical, in my experience. Especially if there were neuro issues involved. Eldest DS was not difficult to dx, hallelujah, bc he performed nicely for each EEG. But treatment was another issue and our only local pedi neuro is a buffoon. Thankfully, we were able to go to nearest big city children's hospital and that ended up helping a lot--enormously inconvenient, but at the time I was SAHM so was do-able.

I keep telling myself "nobody is dying." Maybe I should rework that self-talk to "we are dong all we can, in the moment."

You are doing a beautiful job.

The information will come in, and be informative (one hopes), and then some light will shine on the path ahead.