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.

Thank you! I am doing all I can...I am doing all I can...I am doing all I can...

Update:
I received not one but TWO positive emails re: DS class performance this week! This shouldn't be noteworthy but since it's the first good report all year, will share a little:

"The past two weeks have been great regarding [DS'] mood, attitude, and participation. He has been more involved than he typically is, and he really has seemed happier and lighter lately. It has been cool to see."

Also:

"[DS] has shown a marked improvement in his work this week. He scored an 83% on the test, but also apted for correcting his wrong answers for half credit and finished with a 92%. He still interrupts, particularly when I am giving out instructions, but is getting the work done. Most of this and next week are hands-on labs, hopefully he can continue to get his work finished even when we are moving about the room."

Of course, his math teacher is still not impressed:

"Mood seems moderate. Blurting seems improved since his detention time. There are still occasional opinion statements regarding assignments and the wording on the assignments, his comments are typically snarky."

I'm going with gallows humor at this point. This is the best news I've had all year...after spending most of elementary with teachers who seemed bemused (not offended) by DS and his personality. I think the biggest difference is he is a very relational child and will only show (the best of) his true colors with kind, supportive people.

I think he is going to get Bs and Cs (and will be allowed to stay in program), based on current trajectory. And, of course, an A in Band. :P

Countdown: 2.5 days left of school. !!!!!!!!!

P.S. We made med change, last week. Ugh. Was that all it took?

Perhaps.

I'd say that the med change may enable the social learning that needs to take place. It doesn't mean no interventions are needed; it means that while the meds are in place and he's not in fight-or-flight mode, that's the time to really teach the missing skills.

You're right, of course. Other changes that have happened:

He has now had three sessions with EMDR therapist and is really enjoying that.
I have adopted a much more direct, pragmatic communication style with DS (in regard to school--we are keeping the usual dynamic otherwise).
I insisted (begged?) his teachers move him close to their desks.

I think the med change has definitely influenced his biochemistry, though. He is eating better, sleeping better, and no longer has pallor/fatigue.

There just wasn't time to change one variable at a time.

I hope this is the beginning of a new direction.

Yes, it's often that way. You didn't have a control group in any case; we do the best we can with what we have to work with. My guess is that your intuition is going to be very good.

New direction: oh yes, I'm hoping for you.

Today is the neuropsych eval--she said she will do it either in one long day or two, depending on DS. I still don't know what she's doing, other than ADOS.

Yesterday, in car, conversation with DS about math teacher. I told him she views his attitude as snarky, and asked him about the "commentary about problems/wording" on math assignments. He said there was a word problem that was essentially a very long run-on sentence (no punctuation), that ended with an exclamation mark. He found it funny, and thought he was being "friendly" by talking to her about it.

I asked if it was a problem she wrote, or a worksheet (trying to figure out why she was offended by that). He said it was a worksheet.

I know this is sorta hypersensitive (and somewhat OT) but it really bothers me that his behavior is "under the microscope" to that degree. Being attuned to such things (incorrect grammar, etc.) is a *gifted* characteristic--does she not even know that? (Rhetorical.)

I can't imagine explaining to my son that he is not welcome in his school environment--where he was placed bc of gifted ID--for exhibiting gifted behaviors.

I guess I should be happy this is the worst of it--but I'm not. Our new strategy is for him to "not even talk at all" with the two teachers who seem most hostile toward him. It doesn't seem to get under his skin, but it makes me feel sick.

Also (and this is snarky, I guess): I get a sort of kick out of imagining the next few years for these brand-new teachers in this gifted program. I know they will be teaching a lot more children with characteristics like my DS' (just statistically). I hope (and also know) there will be a lot more parents, who are much more aggressive than I--and also with more time, social clout, etc. than I have. It's not very nice of me, but I kind of enjoy the idea of Ms. Math meeting her match.

I hope it all goes well. And brings light.


We've been there too. There is a combination of socializing the kid to fit in better and working hard to get the teachers to understand who the kid is. (And laying low when a teacher won't. Yes, there is that.)

I hope you and DS can laugh about it sometimes.

Learning experiences all round! And yes, keep on snarking, here where it's safe...

Framed another way, it's not necessarily that *he* is not welcome in school, rather that some of his "gifted" behaviors are not prosocial, but may be seen as off task or disruptive.

Possibly he may benefit from learning that often people view "being friendly" as something other than pointing out errors. Errors may not be the best subject over which to attempt to create a bond. This may be especially true for authority figures.

Parents may get a sinking feeling, often it means there is more to be learned so that future situations may go more smoothly. It is difficult, but beneficial, to remain focused on role modeling behaviors which are in your son's best interests to learn. If parents and teachers are engaged by wounded ego and/or engaged in a power struggle, the child may be caught in the middle rather than being the focus of exploring ways in which to help him learn. It can be helpful to take a step back and develop a somewhat objective, pragmatic view of helping each understand the other and thinking win-win.

You make a lot of really good sense, indigo. Fwiw--I do not feel there is any sort of power struggle on my part--that's not my angle or style. I've aimed for empathy and patience on all our parts. There are some people who are better at delivering instruction than establishing a relationship with students and that's my take on this situation.

I've been careful to keep my communication descriptive and as objective as possible, but privately I have my own opinion(s) about what makes an effective teacher. I think there's a broad range--but being defensive and narrow-minded will never be on my list. My son has never disliked a teacher. He is as nonjudgmental as they come. I'm having trouble with this one bc she seems to steadfastly refuse any perspective but her own.

I am in waiting area, and hear a lot of laughter from psych & son...good feeling. She is doing WISC-V and warned me scores would prob be lower since it's new (?)

Also ADOS. Not sure what else. She said there's a plan but she may change midstream depending on observations.

Yes, I've encountered a few like that as well. Sometimes joining a group like the Davidson Educator's Guild may help them be mentored by peers who may be more amenable to gifted, and who may embrace the open-mindedness which is beneficial in teaching.

In general, older IQ tests tend to yield higher scores as each year the scores tend to creep up a bit (Flynn Effect).
More recently released IQ tests tend to yield lower scores.
Here is a recent thread on this: Comparing WISC-IV & WISC-V.
Here is a blog post from Deborah Ruf: The "Flynn Effect" Affects the Gifted Learners Even More... .

This made me giggle. Maybe I should suggest it to her--LOL! She has had no interest any any of my "this is what works best with DS" so far. I think she experiences it as an affront. That's another thing that does not compute for me. I've begun to think I have my own ASD traits since things that don't make sense drive me batty.

There is def. no ASD in myself or family (there is plenty of other stuff, though) and I completely agree with you. I don't think it is an ASD thing to think that this attitude in a teacher does not make sense.

As you are a teacher, you could also join the ed guild an be among the mentors there.

Parents do learn a lot about ourselves as we work to understand our children.

This is interesting! Honestly--IQ stuff makes my eyes cross. I'm much more oriented to the "so what." It looks like the "so what" is to take results with grain of salt. I'm most interested in seeing the individual scores and his PSI--which was much lower 30+ points than GAI last time--and evidently can be useful info? So confusing!

Very simply put, when Full Scale IQ (FSIQ) is believed to be impacted by a low working memory and/or slow processing speed, a General Ability Index (GAI) is calculated. The score discrepancy can be indicative of 2e, leading to prescribed remediation, instructional differences via an Individualized Education Program (IEP) and/or accommodations (504).

Thanks deacongirl-it's good to not feel alone.

indigo-- I don't teach any more...but I might read, to develop perspective.

Our district *only* uses GAI for gifted ID. Not sure they even do whatever tests assess PSI. My son had full test privately five years ago and it seems like his processing speed was flat 100 and GAI was in low 130s. It was much higher (145 ish) when he was very young, but I'm told that's typical?

Eco, FWIW my dd was tested at 6, and when tested again at 11 some subtests were 2 SDs higher. I think for her it was due to perfectionism and just not a great rapport with tester. Achievement shows that later testing was more accurate. I think it will be interesting to see how your son's results today compare to past results.

This. Is. A. Very. Long. Test.

They took a little break and now are back at it. Testing 2.5+ hours. . Just WISC. Hope ADOS isn't so long. DS looks wiped out.

Some of these tests go on longer the better the child does. (i.e. they go until he gets a certain number wrong in a row.) Take it as a good sign that he's doing the best he can.

I expect you'll need another day to complete it all. This stuff is very tiring.

He's better now, we had lunch. She said they chatted & took movement breaks so it wasn't really as long as it seemed:)

She also said he started making up a rap to do the working memory, and also tapping table, etc. I guess it worked--and I'm happy he's not anxious and is being himself.

Okay--he actually seems happy as a little clam. This is right up his alley! LOL

I'm glad she gets to see the joy of the kid. It matters. :-)

She said: I hope this is validating to you--this is a tricky case. Sometimes I see kids who I immediately know are Asperger-ish, and think HOW WAS THIS MISSED?

She thinks DS is very oblivious socially and emotionally, and that he may be using avoidance.

She said she doesn't think NLD bc his verbal and perceptual are pretty even, strong visual spatial.

She said she needs to analyze her data before she can dx.

She also relayed some of the things the teachers shared and it was, frankly, awful. She said she was told that "something has to change" if he is to continue with the program, but the language is unclear about what it is that has to change. She attributed that to it being social skills, and nobody understanding it.

She said she'd try to get a report and dx, with recommendations, to me by the end of next week.

Ugh.

Evidently, the biggest issue as far as the teachers are concerned is that he is acting like a "class clown," doesn't show an understanding of what's funny and what's not, doesn't understand adult/child boundaries.

Also--she mentioned that he may have just perceived as a Waldorf type kid until this year, and people attributed his eccentricity to his giftedness, when he was a "big fish in small pond." Now that he is with highly effective gifted peers, it's noticeable that he does not fit.

Eco, none of this is pleasant to hear. And yet your tester's observations match all you've said here, and she sounds responsible.

"Something has to change" can be the school having to change... need not be all on your DS and you (as it has been to date).

I think something positive is in the works here. I really do. Hang onto the long view.

I hope. I'm still processing all of it. Not sure why I focus so much on the negative...bc she said a lot of really nice things, too:

She said she had asked open-ended questions of teachers re: strengths and there were "many" mentioned (but we did not discuss those. I hope they are in report).

She said that DS *is* really funny, and had her LOL'ing a lot during testing.

She said he exhibited several very kind/helpful behaviors, including helping by picking up blocks which fell to ground during test, and also retrieving a ball that had rolled away. She seemed to think that was relevant. And also that he understood he should not go under her chair to retrieve ball (personal space?)

She said he is NOT a kid who needs less challenge (nor more) curriculum-wise, but needs a lot of structure and support with EF, and that removing him from the program would present a new problem.

She said her hunch is that he would not particularly benefit from OT types of interventions.

She gave me the name of a guy who runs social-skills groups (woot!)

One poignant thing she mentioned: she said DS considers a "friend" someone who he can discuss things with (at school) and that he is not bothered by lack of social life outside of school and prefers his "space," which she thinks is okay. She mentioned it was notable that his definition of "friend" was not even what would be expected on a vocabulary basis, based on his verbal ability. He didn't even mention his "true" best friend.

She echoed indigo's thought that trying to "bond" and be "friendly" with teachers via critical remarks about errors is a social error. She stated he needs some remediation about how a student/teacher relationship functions.

Sorry for the blather. I feel addled.

She also gave DS a really cool 3D V/S puzzle to take home, which he did, and played with in his room for a long time. That was very nice. I think he had the time of his life. He feels "awesome" when he feels competent--his words.

Deedee gives great feedback as usual. It sounds like you will soon get the information you need to make those positive changes for your child. Kids like yours are the reason I am going back to school to become a teacher. Hang in there.

Thank you! I am trying to tell myself that all of these things this year have been informative and in the interest in helping DS. I think I have plenty of "evidence" if needed that I was left too far out of the loop to do anything different until I was suddenly *in the loop* but not in an effective way.

I had not heard word one about the "class clown" behavior until yesterday, for instance. I had only heard the "snarky" comment from one teacher. But it was universally reported.

I talked to DS on the way to school. He agrees with psych that his intense feelings are not matched with equal coping skills and that avoidance/withdrawal does not help him succeed.

He said it will be no problem to cease and desist with the "class clown" stuff, now that he knows it is a problem. Time will tell on that one.

Does anyone know if you can get behavior analysis and/or behavior intervention plan with 504?

I'm sorry that I keep going on and on and on. Nobody IRL (with the exception of my sister) believes that any of this is happening (my mother, for instance, said I HATE diagnoses!--but didn't offer a better alternative). So I'm alone with it. I'm divorced and kids' dad is absent. So this board is my fill-in. I will mellow out soon.

He sounds like a great kid who wants to succeed. That is hugely important.


I agree with psych about social errors about teacher/student roles and appropriateness. This can be taught as a thinking strategy-- at the beginning of an interaction, noticing what role the interlocutor is in (teacher? police officer? boss? buddy? best friend?) and choosing words accordingly.


Generally anything that requires staffing (behavior analysis) requires an IEP. I would definitely prefer an IEP for a child with these challenges.


An online friend helped me during our diagnosis year and the subsequent struggles with figuring out appropriate education for DS12. You should ask for the support you need. I will keep paying it forward, as will others, I'm sure.

You are doing a beautiful job. I am impressed with your caring and smarts, and with your DS's beautiful spirit. I think you'll be fine-- just some things to sort out and work on here.

DeeDee, I typed out a long reply and my phone ate it. Suffice to say you have been so helpful and supportive it's kept me a bit calmer than completely nuts.

My son is so dear to me. I'm glad that's shown in my rambles.

ASD or not--I'd say the behaviors are close enough to use similar conceptual model.

Little update: the neuropsych sent me an email, saying she needs to ask me some more "developmental" questions so she can complete the eval. She said she can do it via phone this week.

I can't imagine what's she has to ask that we haven't already covered--ugh! I'm trying not to drive myself crazy worrying about this. Mixed results.

It will be too late to do anything with the results this year--but there is an automatic 504 meeting at the beginning of school (I think! I'm not sure they do it every year).

I contacted a friend who is pretty expert in disability law because it's her career area and she has a son with severe ASD and has spent his entire adolescence trying to keep him in school. My sister mentioned this friend had used an advocate from the MPACT agency during her last "negotiation" with the school and thought the advocate saved their case. So I've asked for that person's contact information. I think I'll need an advocate, regardless of the school's stance, because I don't feel capable of separating my emotions from the situation. Even having devoured the Emotions-->Advocacy book.

Also: after thinking over what the neuropsych told me re: teachers' perceptions of behaviors...my conclusion is that none of his behaviors are severe. I was talking with my parents about it and said my feeling is that DS is annoying and irritating. My dad said, "TOO BAD. Lots of people are irritating. They can't remove him from school on that basis." LOL

I discussed the "class-clown" oneupmanship with DS and his teachers' perception that he is being competitive and trying to "outdo" his classmates. He said that is not what's happening, at all. He said he loves it when people are funny and he becomes so excited and overstimulated that he just wants to keep it going--doesn't know when to put on the brakes. That seemed pretty insightful to me, and also gives us something to work with because if he can begin to notice when he is "amping up" physiologically, perhaps he can learn to regulate it better. I hope.

They probably want things like age when walked, talked, all that kind of stuff. Sometimes that helps them decide things if they are on the fence.

I will say that in our experience with gifted ASD it was important to separate verbal giftedness/fluency from pragmatic language use. It took us a while to find people who were able to do that.


Report the results ASAP and ask for a meeting to re-evaluate in light of the new evidence. I agree that it may or may not happen this year, but it's a priority that it happen as soon as possible. You can change the 504 meeting agenda to accommodate as needed.

Even though it's late in the year, it helps the school to have a heads up.


It is also useful to have an advocate because *they can say things in meetings that you can't.* If I tell people my fourth grader has read and understood a college textbook, no one will believe me. If the advocate says it, it's plausible.

Likewise: they can call people out when they say inappropriate things, in a matter of fact way. That role is very tough for a parent.

Well, yeah. But down the road people can definitely choose to not offer him a job because he's irritating in an interview.

In some ways, kids like yours are the trickiest-- they are not "obviously disabled" but they are also not within the norm.

I think the best strategy is to help them learn the norms and enough self-advocacy and self-awareness that they can blend in as needed. Protective coloration.


Yep. He can do this.

There are lots of ways to teach this skill. Some people use the "Incredible 5-point scale" which also has resources for teenagers. http://www.5pointscale.com/more_sweet_scale_five_book.htm

I'm not even sure I remember DS milestones, only that they were within normal ranges--although I know he was much less physical than my other two children.

I'm wondering if it's useful to report odd anecdotal things to neuropsych, since of course I've been reading like a maniac.

For example:
DS began reading simple words very young (2) but then stopped. He was an early reader but not exceptionally early.

DS was the world's easiest baby. Slept through the night extremely early, almost never cried, was content to sit and watch me, liked to sit and play (didn't get into things). I have read some ASD babies are like this. With the exception of loud, startling noises--which totally freaked him out (and still do).

One anecdotal thing I read (who knows where?) is that kids with ASD often control play with other children. I remember thinking it was very strange that DS would play with other children in ways that seemed to be imaginative, but he was the director. He would say: I will say [.......] and then you say [......]. Over and over and over. Fortunately for him, he had a younger sister who was compliant.

He has been described as a Little Professor dozens and dozens of times by adults. I don't think he presents this way at school/with peers.

Also, something I'd forgotten: he used to have to "start over" many many times when he tried to express himself. Not quite a stutter, but similar. Like he'd get lost in the middle of a sentence, and began again, with EXACTLY the same words he'd used before, but adding on more each time (this was very exhausting to listen to).

He sucked his thumb and "flicked" his bellybutton simultaneously until about last year, when he was tired or anxious.

He was terrified of butterflies for a VERY long time (which I found hilarious and disturbing at the same time) and then moved on to bees. We have to re-acclimate every summer to the fear of stinging insects (he has never been stung).

He did not learn to tie his shoes until last year and it's still difficult for him.

He has periods of sleep disturbances (sleepwalking, terrors, other arousal disorder that includes picking at himself and mumbling, and also nighttime vomiting, cyclical, not viral).

I'm sure there are more. Are these things you would tell the neuropsych or will they just make me seem (more) neurotic?

I think most things I've attributed to his just being very asynchronous and a little odd.

UGH!

P.S. This isn't a weird attribute but just because I think it's neat: DS has a "job" this summer working at a friend's law firm as a "clerk." He is going to dress up in grown-up clothes and do some tech-y stuff for them and run things over to the courthouse, entertain clients in waiting room (he is an excellent "host.") It's in a small town outside of ours and he and I are really excited about this.

Eco, your list is exactly the stuff the neuropsych is likely to be interested in.

This kind of information (which just seems "quirky" to us) does help them piece things together.

None of this is "wrong" or "bad" stuff-- just information. Keep breathing!

ETA the job sounds perfect!

Thanks for the advice! I worry that the NP will end up dx'ing ME as a nutcase instead of DS (jk, mostly).

BTW--I am not ignoring your advice and resources, just trying to get my thoughts down on "paper" before going to work this morning. I'm going to look more into the Tony Attwood behavioral system and discuss with DS' therapist. I think it's helpful for the therapist to begin these discussions so DS sees my input as supporting what the "expert" thinks.

eco, one thing I think you'll find with a good neuropsych is that they will pull this info out in the parent interview. Our neuropsych asked so many questions about developmental things that I'd never thought would matter in any way, and used them to help piece together the puzzle of what was up with our ds. FWIW, my ds' developmental milestones were all considered to be within normal range when you look at age-range-charts and by his ped - yet when the neuropsych put it all together, they were at the late age range across the board for motor skills, which was meaningful. When your child is actually going through those stages you are only looking at the development one milestone at a time; it's the broad look back at everything as a global picture that lets a neuropsych piece together whether or not something is indicated in the developmental history. FWIW, my ds who met all his milestones, but on the late side, has relatively severe dyspraxia - and no one saw it *at all* when he was little. But looking back at the broad picture, it was clearly there.


I would not make assumptions about what something *is* but I would make a list to give the neuropsych about anything you think might be meaningful. For instance, if your ds didn't start rubbing his eyes until he was 5, and that's on the late end of the "typical" age range for rubbing one's eyes, and it's also a symptom of "eyes-impacted" disorder - put the "rubbed eyes at age 5" on your list, but don't phrase it as "possible eyes-impacted disorder". The neuropsych wants to know what symptoms your child is displaying and then he/she will put together the big picture of what all the symptoms mean in terms of a diagnosis (or no diagnosis). The rubbing-eyes is a totally bogus example (as far as I know lol!)... but most typical developmental symptoms can be indicative of any number of different diagnoses - our neuropsych likes to show her clients a chart of the overlap in symptoms between ASD, dyspraxia, and ADHD. The number of shared symptoms is really large - which means you need the professional to help sort out what's up.


I'd mention the starting and then stopping, and I'd include the ages that he started and stopped if you remember them - even a ballpark estimate.


Quite a few neurotypical babies are like this too... I have one. Apparently my friends have many more lol. So - I'd include the note about sleep history but not add the note about ASD. Let the neuropsych sort out if it's meaningful or not and if so, what it applies to.


My older dd (nt) was completely freaked out by loud noises. We were also told during a reading screening for a summer program when she was in first grade that she more aware of background noise than any child they'd ever screened. One year later we found out... she couldn't *see*. After she had vision therapy, she no longer was so distracted by loud noises. I'm not suggesting that your ds has vision issues, but just wanted to mention that even issues like this can't easily be deduced to be caused by syndrome "whatever" unless a professional such as a neuropsych is looking in detail at the functioning of the whole child.



I'd mention this. And I can empathize on the exhaustion!


Again, another thing that might mean something in the big picture, or might not. My nt dd is absolutely terrified of spiders. And she's a teenager now.... no sign of ever outgrowing it. And no amount of logic will convince her to not scream her lungs out anytime she thinks she sees one



This was one of those key developmental milestones in our ds that we completely missed - because there were so many velcro shoes in the world, and because school requested velcro shoes for all the kids. He couldn't tie his shoes when he was 8 and saw the neuropsych, and I had no idea that this meant *anything*. So.. put everything down on your list, and don't worry about whether or not it seems obsessive to be mentioning it.


Have you considered the vomiting might be food-related? Allergies or reflux?

Hang in there - you're doing a great job thinking all of this through and seeking out the evaluation.

Best wishes,

polarbear

ps eco - please don't feel like you need to reply to my post - I'm just putting thoughts out for you. I know it can be exhausting to feel like every post needs a reply! Mine don't

My son (does have ASD) hated (hates) to be interrupted mid sentence and has a compulsion to start all over again at the beginning if interrupted. So he is talking and little brother yells good night from another room....he starts over...husband enters the room not knowing we are talking (son is a quiet, slow talker with pauses and one can enter a room and not know that he is talking). He has to start over. You need to ask a question because none of what he is saying makes any sense because you missed a key fact....he can't answer your question and pick back up...sometimes talking with him is painful.

Cookie, it sounds similar but not exactly the same bc (as I recall) it wasn't about being interrupted, but seemed to be more like he'd have trouble with word-finding of lose his train of thought and have to start over. It's been a (long) while.

He also used to sorta "announce" when he needed to say or ask something. "I have a question" instead of just asking...or "I need to tell you something."

Strangely, I'd forgotten about most of these quirks.

I don't have a baby book or anything similar and have really no idea about most of his developmental milestones--except he did walk quite a bit later than my other two--that I remember.

I also remembered today that he used to wander off (actually once got out of the house early in the morning--and was returned by a neighbor--before I realized he wasn't in his bed--OMG).

I also used to tape balloons to the ceiling fan bc he loved watching it spin, that he lined up cars by color instead of playing with them, and also built elaborate, perfectly symmetrical, by color and shape, block structures when he was very young...

I wonder how many things I'll remember? Now I wish I'd kept some sort of baby book.

Dramatic play?

My DD had very little interest in this. Sure--she would bang around in play kitchens, taking out pots and pans, putting them on the stove, or whatever, but she did not make up "stories" with any toys. She does not have ASD, she has ADHD and executive function issues. My other child, who seemed more stereotypically ASD with late speech, flapping hands, toe-walking, etc. (he has dyspraxia) would play with his Thomas trains at age 3 and yell Choo Choo and make them talk to each other. Of course he was "strange" in that he could recognize every train and say the train's name just by looking at the train's face. I had gotten about 100 trains from a garage sale and he knew all the names--to me they all looked practically the same (although he was never obsessive--I attribute it to something resembling a photographic memory).

I hope the eval gives you some good answers and information about how to proceed.

Well, now I know why your DS is so appealing to me when you write about him. He's very like my DS12.

All this gathering is useful, but don't fret or over-analyze if you can help it.

Yes, this is exactly what I'm thinking (and why I'm sorry I don't have actual records!)


Thank you for mentioning the eye-rubbing was an example, before I fired up Mr. Google--ha ha! It does seem like there is an awful lot of overlap between distinct conditions. I think that's one reason I've been more or less satisfied with the gifted/ADHD model until just recently, even though it has always felt ever-so-slightly-off-base.

I haven't really been able to figure out the vomiting thing--this is one I did mention to the NP and she said there is a possibility it's related to chronic constipation and things "backing up." That didn't really make sense to me from my limited understanding of human anatomy, but she told me she talks about constipation/toileting issues all day long (she works with ASD kids) so I'm guessing she has a good handle on odd GI issues.

I've been musing over this question. Again, I just can't remember! I don't know if this makes sense, but I'd call my son very *creative* but not necessarily in the *dramatic* sense. He's at the age where there isn't as much active play any more. When he does play, with other children, they do things like set up very realistic environments (restaurant, office). When he plays with army figures, LEGO, etc., the process seems to be ALL about set-up: he might spend hours setting up a scene, or constructing something, but then wants to leave it as it is (not manipulate the objects). This is also true of his current hobby of drawing playing cards (similar to Pokemon, etc.) and assigning them powers and writing rules. I don't think he actually *plays* the games, though--it's all about the design. Or he decides to market them and sell them at school.

This is probably going to sound really weird...but what I'm fretting most about right now is that I might have failed to relay some critical piece of information that might make a huge difference for my son's education (i.e. 504 v. IEP). Since NP said the dx was not immediately obvious, I feel pressured to make sure she has all the puzzle pieces.

Another thing I remembered--and this one will really make me sound addled--is that I had scheduled an evaluation when he was 3-4 with the local autism center. I don't remember what my concerns were right at that time, but I do remember by the time he could be seen (many months later), those concerns had dissipated so I canceled.

I also remembered that after his psychological evaluation at age 7, I asked the psychologist (after the report meeting)--"you don't suspect autism?" To which he visibly startled and said: "that wasn't even on my radar." Reading the report, five years later, it seems to me that much of his descriptive language describes autistic traits, but through a different lens. That psych didn't dx the ADHD--it was still in r/o category.

When I counsel clients who are on the edge of a psych dx--I often tell them, it seems to me it is sometimes *more* difficult to be "almost" anything. Because it's so blurry and hard to get a firm grasp. I think that is probably what's happening here.

I just want an accurate, thorough model of my son's process so he can have proper support and be successful...I'm sure that's true of everyone on this board.

You are all so helpful, thank you!