Navigating the diagnostic maze and wanting to hear from others

[FarmerBeth]

I posted earlier about whether to get formal testing for Asperger's (following school SLP and psychology assessments indicating clinical level symptoms) for our 11 year old DS.  We followed through on further evaluation with a neuro-pediatrician, but everyone is on a different wave length.  Previous diagnosis was ADHD, inattentive type, tik disorder and anxiety disorder; and cognitive testing showed high verbal scores (Superior conceptual language and high average vocabulary) but low average pragmatic language score, superior math, superior logic, borderline fine motor.  All SLP assessments indicate poor phonetic processing.

Following the school assessment on social skills, a nonverbal recognition program was implemented, using videos without verbals recognizing facial expressions, voice tone, etc.  DS had no difficulty and surpassed the goal level of recognition from the first try.  He also did well theoretically with theory of mind and social situation type discussions.  The school psychologist is of the opinion that he might still be on the spectrum because in practice he has trouble with change of routine, getting stuck on topics and interrupting.

The neuro-pediatrician used behavioral scoring from home and school.  He said he did not score clinical range for ADHD (and he's been off of meds for a year) and the school agreed with this.  He interpreted his social skill scores as low average, but not a disability.  Based on DS's description of the tiks and on the type of tiks, he diagnosed mild Tourette's, and co-morbid OCD and Anxiey disorder.  He noted slow verbal processing, and oversensitive sensory processing across the board, and diagnosed SPD .  The OT coordinates both with the pediatrician and the school and is not yet done evaluating.

I think the school's social skills program is great, because all kids could do with this.  But I don't know what I think of continued pulling him out of class for work on non-verbals, etc, when he seems to be doing OK.  I also think that because the school sees the social skills as being the primary problem, and the doctor seeing the problem as being sensory and anxiety based, the approach to handling social problems might be different.

Both the school and us parents see poor noise tolerance, hard time following oral directions, problems with interrupting but about relevant topics like misunderstanding school work, hard time transitioning, and lots of getting worked up about kids not following rules or being too noisy in class, lots of tiks like throat clearing and skin picking that annoy others.  The teachers worry about making friends, although I see that he has some good friends outside of school.  Teachers think he doesn't understand social rules like interrupting and I'm on the fence.  He seems to mostly interrupt when he's worked up, and he's mostly worked up about school work.  He just barely started tolerating vacuums and blenders this year, and he has a horrible time with the whistling kettle.  Any instruction seems to take lots of check ins and repetition for him to get it and he has voice expression but talks slowly and sometimes too loudly.  He gets stuck on worries and pet topics.  He likes fantasy books and role playing games and being with the farm animals (he wants to be a farmer when he grows up and would like to take agricultural science).  He had lots of symbolic play as a toddler (he was previously screened for autism spectrum before and this was part of why it wasn't a previous concern), good eye contact if he knows you but awful otherwise, loves to understand how things work but won't remember the terminology or details.  Subjectively, for those of you with kids diagnosed, what does this sound like?  Any ideas what tests could narrow things down to have some sort of consensus between school psych and the pediatrician?  Right now the school's response to the pediatrician's diagnosis is "Funny", and the pediatrician is saying "Let them think what they want, but I don't agree"

Thanks for any input (and please excuse the length).

[joensally]

Are you anywhere near Washington State?  Not that you want more assessments, but the Eides are phenomenal.  Have you read their book The Mislabeled Child?   It does a great job of describing the intricacies of various issues and how to remediate.

http://mislabeledchild.com/

Who did the ASD screen?  And how much time did the neuro-ped spend with your son?

[FarmerBeth]

I am living in Nova Scotia, Canada, so  I'm not close to Washington, but the book might be of help.  The ASD screen was previously done by a pediatrician who himself consulted with both an SLP and a child psychiatrist.  The neuro-ped spent about one hour with my son.  Besides the regular questions focused on tiks, etc, he did some games (pretend soccer, catch and duck shooting scenarios), checked sensitivity by tickling, bantered back and forth about school, the comic book he was reading when he came in, etc, and asked for little favors here and there involving multiple directions.  The rest of his information came from the parent and teacher surveys and our GP.  He explained later to us that he was looking for things like hemispheric dominance, sensitivity, speed of reaction and how long it took to process directions.  He felt that the specific examples given by us and the school for difficulty with social interactions (interrupting with school questions, talking a lot about pet topics like the ducks he's planning on getting, and minding changes of plans or rules weren't so severe as to be a disability as he wasn't being violent, disruptive or withdrawing so much as stubborn.

[joensally]

Did the ASD screening involve the use of standardized tools (ie ADOS/ADIR)?  Now, I'm of the mind that not every complicated kid has ASD, but I'm just trying to determine how exactly it was ruled out when he has a number of markers.

Have you read the criteria in the DSM for Asperger's and PDD?  What do you think?  Have you read the OASIS book on Asperger's?  I found the descriptions very helpful.

As for continuing with social skills class etc, I would.  If you think of it as a trajectory of development, you want him to keep moving forward and not get stalled.  He's still not age-appropriate, so keep working on it, IMO.

Is he in OT for sensory at all?  Sensory/anxiety/obsessiveness/lack of social awareness can all feed one another.

My son's one of those multiply complicated kids with an alphabet list of diagnoses.  We're actually about to go into another round of assessments with another clinical specialty.  ASD's been ruled out, but he's still complicated.  I have found that dealing with the sensory issues as our first line has helped immensely as all problematic behaviours are worsened when he's on sensory overload. 

The Eides quote:

"The beginning of wisdom is calling things by their right name". - old Chinese proverb

I used to be very obsessed with this notion, but now we've got a bunch of right names, not one single label.  It means we have to look at what he's struggling with in his day to day life and figure out strategies that work for him, regardless of what the diagnosis is.  It has required a lot of leadership and advocacy from me as his parent, as no one is an expert or has the secret formula that works just right for him - never mind that he changes as he grows!

[FarmerBeth]

The screening used the CELF 4 pragmatic language assessment and there was a range of behavioral screening I don't remember the letters and numbers for.  At the time (age 4) he had few markers for age.  His eye contact was good with everybody, including strangers, until school started, and he didn't show obsessive interests or problems socializing in preschool.  The reason he was assessed at the time was because of pulling out hair and eyelashes.  Early elementary he had some OCD type behaviors like being worried about eating bitten food , checking the clock repeatedly for fear of missing school, and worrying about errors in school assignments.  CELF 4 language assessment was used this time, too.

I've read the DSM for Asperger's and PDD.  There is no correlation with PDD I can see and DS is a kid who met every developmental milestone on target or early.  Some of the Asperger's fits but there's a lot that doesn't.  There has never been a lack of imaginative or social play (he spent lots of time as a preschooler acting out scenarios with the other kids).  He understands and uses metaphors easily and doesn't take them literally (After church last week-end he was talking to the minister after she had said in her sermon that many clergy see themselves as shepherds.  He told her they seem more like horses to him as they carry a message but can't truly watch over the whole flock).  He hs a good sense of humor and likes comedy although for some reason he doesn't get Mr Bean).  The DSM describes having obsessive interests with a lot of rote memorization but poor big picture understanding.  While DS has pet interests, he's all about understanding the big picture and cares little for stats, memorization or details.  He talks a lot about business ideas, but he also used them to become an entrepreneur (he has a baking business), he talks about farming but in relation to what he wants to do.  He also likes to share his interests and hear others'.  He has no sign of problems with reading the emotions of others at home. His nonverbals seem to match his message.  What did fit was the hanging onto routines (he doesn't as much this year but he certainly hung on later than usual), getting annoyed about rule breaking (like he doesn't get why we allow our younger son to bend rules playing checkers or he has a hard time with peers using rude language that for peer-peer interaction is not unusual) and interrupting.  I work at the school and I volunteer in some of his programs, so i've noticed that for whatever reason his social skills are worse at school than at youth group, the outdoor recreation program, young entrepreneur's program, etc.  He has a close friend from his old school (we moved almost two years ago) and a girl one grade above who he talks to a lot.  He has no friends in his class, but a few friends one grade up that he spends casual time with playing soccer on the school grounds.

We were a long time getting a referral for OT assessment on the sensory issues so he has only just started therapy.  He has had extensive group and one on one therapy for the anxiety in the past, and a lot of OT for fine motor skills.

I love the social skills program they had in place when it comes to the getting him to volunteer and spend social time through swim program, etc, especially since with the anxiety he needs help with this anyway.  What I'm not sure of is spending more time on this nonverbal recognition program when he had 80% accuracy the first try and the goal of the program was simply to reach 60%.  He's getting very anxious about losing classroom time.  A lot of his interrupting happens about wanting the teacher to clarify instructions for assignments or being worried he did something incorrectly, and I'm concerned that if he misses too much time he might interrupt more.  He kind of gets beside himself and all teary eyed saying he can't get it and when the teacher asks him to wait until they are done and see her privately he just doesn't wait.  He needs instructions broken down into steps a lot of the time and he still has trouble decoding a lot of words in written instruction.  He has some pretty significant self esteem issues involving reading ability, and he can get into an outright panic about language arts.

Edited by FarmerBeth - 5/27/11 at 1:41pm

[christinelin]

Honestly, half of your description sounds just like a kid with Aspergers and half doesn't. If he were mine and figuring out a specific diagnosis was important (versus just focusing on interventions, which you seem to be doing already), I would find a clinical psychologist who is really familiar with what subtly affected, high-end kids look like. They should do a parent intake interview, testing with your child (including ADIR/ADOS, if indicated), get feedback from teachers, AND (I think this is the most important with a hard to figure out kid) do an observation of your DS in a naturalistic setting with peers). In our area most developmental peds don't do this last piece and I think it is really vital. 

My son, too, has some pieces and not others, but he is definitely on the spectrum and I think knowing that is helpful.

[FarmerBeth]

I'm still pretty OK with focusing on the interventions as long as everybody is on board about what is useful.  Part of what I think is affecting this is that the Tourette's diagnosis (which I am not disputing, he has a range of tiks from blinking, shrugging, sniffing, grunting a hum, etc and he has a feeling beforehand, can hold off a while but lets out in private, etc, etc) also tends to go along with obsessive-compulsive behaviors, and the phonetic processing issues can affect listening and noise tolerance (our youngest son who is definitely not on the spectrum but has central auditory processing disorder and phonetic processing issues is very attentive and can follow anything visually but definitely needs quiet and slower speech speed to follow what is said easily), so it's hard to tell whether symptoms are due to these issues or something like Asperger's that has overlaps.  This is the fourth time around with clinical psychologist evaluations, and to be honest I don't know if any of us can stand more (DS has always noticed he is observed even when they thought he wouldn't and we dealt with weeks of increased tiks).  However, the OT is doing some observations at school (hopefully without him noticing) and we told DS there would be no more psychologists this year, just the OT (who he doesn't have negative associations with), so maybe he won't be as geared up as he would be if he knew we'd seen the psychologist.  She is consulting with the neuro-pediatrician so maybe that can give him some better info.  She also corresponds with the school clinical psychologist.  I'm hoping she might be a good go-between as she is the OT for the children's mental health school team at the hospital. Maybe communication in the next couple of weeks between them all will iron this out enough to avoid the ruffled feathers feeling I'm getting between school and doctor.

[blopez5293]

It sounds like you could use a case manager for your son's providers.  Try talking to the school's psych or your local mental health clinic or Dr. about getting him a case manager to work with you to coordinate everyone who is helping you guys.  It should help a lot.  Hope things get better for you and stay strong.

[FarmerBeth]

The neuro psych and the OT are both through central mental health referral (provincial hospital system) for our region.  The hospital psychologist is on board, too, but hasn't yet evaluated.  I think I'll ask the doctor about a case manager as the hospital system regularly sends services out to the school (like the speech language pathologist and OT for fine motor), but the school can only refer to the hospital.  Both require my consent (which they have) to share info.  Thanks so much for the support.