"clinically significant"????? | Autism PDD

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What exactly does that mean practically??

We just had a meeting with a social worker to go over Jason's recent tests scores.  We started a new social skills group with a psychologist and as a part of that they wanted some baseline testing done.   We told them we weren't really interested in another formal diagnosis at this time... just don't need it right now... but apparently they went ahead and did all the testing associated with one anyway.  They told me that while he does have some Asperger's tendencies that they are not "clinically significant" because they do not interfere with his daily life and therefore he is not diagnosable at this time. 

According to the social worker he didn't come out in the autistic range in any of the test they did.  I am confused because here I am with this little boy who still can't/won't (whatever) socialize with other 4 year olds????

He also said that Jason is profoundly gifted and thus will always have difficulties with children his age because they aren't on the same level intellectually??  Opinions on that??? I really feel like there is more than just an issue of giftedness going on here deep down in my heart.

Here are his scores on his testing..

On the PDD Behavior Inventory his T scores (50 being average for autism... below 40 being "typical") were as follows...

(these scores over 60 being "typical")

** bolded answers were marked as most important

Then his Autism Composite score (overall) was 29... again anything under 40 being not autistic. 

Then on the Vineland he scored age equivalents of (he was 4 years 5 months when testing was done)...

* Overall communication was given standard score of 127 (96th percentile)... "mod. high"

* Overall daily living skills standard score of 111 (77th percentile)... "adequate"

* Overall Socialization standard score of 94 (34th percentile)... "adequate"

 

 

 

That stair step analogy REALLY does fit exactly!  Interesting analogy!!  Its interesting though as my other son's development has always been a curve yet I still have some concerns about him... something to think about.

Anyway... most of those social skills groups are new... things we recently stated to help fill in those gaps.  He JUST started the psych led social skills group 2 weeks ago and has yet to start the one led by the developmental specialist.   He's been in the speech group since the begining of this year though and it has REALLY helped him I think.  He's not in school right now so he's not getting those services and won't until the end of August.

Cinically significant is a term used to state that the symptom is within range to diagnose some sort of abnormality or deficiency or problem depending on what your child is being tested for.  I personally believe that there are not exactly magic numbers when they are trying to diagnose autism.  Because it is a spectrum disorder and there is such a broad range involved, I am convinced that these margins have to be wavering slightly to one side or the other with many children.  Anyway, I am not a clinician but, that is my theory.  They say my son is not "clinically autistic".  The school has him rated as autistic.  I believe he is autistic, but because he has language he is rather given a diagnosis of "communicative disordered".  This may change I know as he gets older.  As a matter of fact at age five I am beginning to wander if it is Aspergers.  But, the important thing for me is that he is receiving the services he needs and because the school has him rated as autistic he is receiving what he needs for now.  If that ever changes then I may really consider persuing a different diagnosis.

I think it's "significant" that with so much hard work -- 3 different social interventions a week -- he's still scoring a year behind in the social area.  Can't they imagine where he would be if you *didn't* do these things?  Don't they realize that stimulating your child's development is not usually such hard work? 

I really liked MamaKat's stairstep analogy.  That is very much how my son's progress is.

 

I had a really interesting talk today with a Dr. who has been researching
and working with kids and parents on the spectrum for 50 years! I will
post more later, but he said he believes the biggest overall sign for being
on the spectrum is uneven development in the social/language/motorskill
areas. He said even kids with MR develop their skills in a smoothly linked
manner. Uneven skills, and spurts in development (as opposed to slow
steady progress) are usually the best predictor for an ASD diagnosis.

He made a graph: typically developing kids development charted like a
softly curved line ascending up the page. ASD kids looked more like an
uneven staircase, if that makes any sense.

Apparently there are no other disorders that present like this in children.

I would say that language at 7.6years, social at 3.5, and play at 2.7 is
pretty indicative of the disparity in skills he was describing to me today.

I personally think you should seek out an expert in asperger's for your
son. He actually sound much like my 4.5 year old boy. very verbal,
bright, never engages with other children. I have heard the line about
him "being too smart" to understand other kids. And I don't really buy it
either. I, however, have never heard that not being social with other kids
at age 4 could be considered "typical" at all.

I actually posed the question today about why my son is able to engage
with adults and not with children. He was the first to explain it to me in a
way that made sense.
he said that children use a lot of symbolic language in their interactions.
Nudging, leading, non-verbal cues in play and sports. They make faces
at each other, shrug, and make sounds like "sheesh" and convey ALOT
through this kind of communication. Our kids have a kind of social
blindness to these cues. Adults on the other hand, communucate to
them in a more complex verbal style that our hyper-verbal kids at the
mild end of the spectrum can understand quite well.

That made SO much sense to me.

Sarah,

This evening the mom of a boy in C's class called me.  We'd spoken at a few birthday parties, and in previous conversations I'd shared that C had an aide in class because of his autism, and she shared that her son had a lot of sensory issues.  She was calling to ask me how I went about getting an aide for C because she thought her son would need one for next year in 1st grade and she has an IEP scheduled for this Monday and they (parents and school) feel that her son has Asperger's.  I offered to lend her my books to get prepared so she came over tonight to get them and we talked at length.

She felt at age 3 that something was a bit off with her son, so she had him evaluated via school screening and was told all was ok.  Then she had him evaluated privately at age 4 and was told he was very gifted and his quirks were the result of that.  (Sounds just like what you are being told at the same age).  Well, this year in kindergarten it all fell apart for her son.  Explosive behavior, non-existent social skills, increased sensory defensiveness, perseverance, rigidity.  Now, at age 6, they are looking at an Aspergers dx.  It sounds so similar to what your situation is.

I also agree with previous posts about the stair-step development v. a curve.  Given the scatter in the scores you're seeing, I am skeptical of all issues being related to being gifted.  I would recommend going for a private evaluation and getting a 2nd opinion.

 

Sarah had the ABBLS done at 4 and 5 and her skills were so scattered ..some were way ahead academically yet the social and expressive language was way behind..I was told too that this wide range is what they look for in ASD because no other disorder has this pattern.  She is catching up to age appropriate range in communication on tests but her other skills are years ahead so she got a provisional autism with savant abilities..not much they do for that here~social takes a back seat to academics..so I will have to find other ways to help her:)

[QUOTE=kristys]I also agree with previous posts about the stair-step development v. a curve.  Given the scatter in the scores you're seeing, I am skeptical of all issues being related to being gifted.  I would recommend going for a private evaluation and getting a 2nd opinion.[/QUOTE]

This was really our "third" opinion

We don't really NEED a diagnosis right now... not for another year + anyway.  He'll continue to receive services through the school district and county until he's 6 (they will re-evaluate him at that point to see if he'll continue).   If they want to drop him at that point then we'll persue another diagnosis more agressively but right now it doesn't really matter.  I know he's on the spectrum... and we're treating him as such... 2 preschools (one integrated through the school district, one typical), weekly group ST focused on social skills, weekly social skills group, and 1 hour weekly with a developmental specialist who is soon to start facilitating a "playdate" interaction with another boy during that time.  At home we use Floortime and RDI principles with him... no formal structure set up though.

I guess right now we just wait to see if/when his symptoms start to become "clinically significant" and interfere with his daily life.  Right now he's not rigid or ritualistic... but he certainly does prefer concrete "play" and does not like interacting with peers.

I would add, there are regressions sometimes before going up a step -- maybe more like saw-tooth instead of stair step!
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