It’s the Bermuda Quadrangle: they want to evaluate DS for ASD

[Tigerle]

This morning, we spent two hours at the children’s psychiatric department. On checking in, they had me fill out a lengthy questionnaire which I could tell was geared towards conduct disorder, ADHD, anxiety etc. Then the psychiatrist called us in and talked about half the time to DS, half the time to me (mostly with DS outside playing with grandma and DD), with a bit of switching back and forth. About halfway through our consultation, however, she had the assistant bring in a “social communication”questionnaire which I could tell was geared towards ASD. One half was social communication skills in a narrower sense, where DS appears to score rather highly in the problem department, the second half was more “hardcore ASD” behavioral traits as it were (showing, pointing, sharing, imitating) where I could confidently put “nos” almost everywhere except one item about wanting to join in and imitate another group of kids on his own (DS has no problems participating in stuff like circle time and games as long as they are adult-directed).

We both agreed that there appears to be a massive spread between his socio-emotional and cognitive skills, that he has major trouble with understanding boundaries and other people’s needs and does not appear to understand his body in space. We did agree that he had some Aspergerish traits (he lectured quite a bit about planets and positively and negatively charges in clouds generating lightning, etc) and did have trouble sometimes relating to her questions.

She also asked how much of ourselves we recognized in him. I explained about periods of social isolation we’d both gone through as kids and when and how we had learned how to fit in (more or less!) as adolescents. And that I hoped DS might be spared those periods and develop better social skills now!

She does feel he might benefit from behavioural intervention and wants both his IQ tested and have him evaluated for Asperger’s to “understand where he is at cognitively and developmentally and to understand where his limits are, so we know what to target”. She’ll cunsult the psychologists on site and call us back for further testing.

I asked whether he’d be tested by the Gifted unit but she said they woudn’t refer him at this point and that Gifted was part of the adult psychiatric department, not children and youth, they’d use their own psychologists. Doesn’t really make sense to me, but whatever, we can always insist on being referred later if we aren’t satisfied with the results.

Oh, and AD/HD appears to be totally off the table. The compulsive-seeming teasing/poking/hitting other kids in trying to reach out to them sounds much more like Asperger’s than AD/HD, the shrink feels. I suggested sensory issues playing a part and she said she’ll tallk to the OTs on site whether they can do evaluations but thinks we may have to go elsewhere for that. I did have a hunch this wasn’t going to figure largely, I will have to keep on eye on not having this overlooked and if necessary, follow up on that one myself.

I am fairly confident that we will end up with a resounding “inconclusive” on the Aperger’s eval. Some traits, but not a full diagnosis. I do think it may be helpful to decide what kind of intervention, if any, will help him with social communication. But I am a bit worried about the “disorder” label (they want his preschool teachers to fill in a questionnaire, too) and whether this might hurt him educationally (our state has actually been cited by the UN for denying special ed children inclusive schooling where possible). So while I don’t mind the testing, I don’t want a diagnosis – we can get services on private insurance, but probably will get nothing but grief from schools...however, if they end up confident it’s Aspergers – so be it, I guess. I won’t stop the process now.

I am so glad I  read the book “When the labels don’t fit” that Joensally recommended before going there today to hear this. DS is and will be his lovable quirky little self no matter what we end up with!

Edited to move the link to my 'Bermuda triangle' thread to the bottom...http://www.mothering.com/community/forum/thread/1282753/update-we-appear-to-be-about-to-enter-the-bermuda-triangle-of-giftedness-spd-and-ad-h-d

[RiverTam]

*big hug*

We went through this with DS1.  He had lots of ASD traits, but Asperger's and not Autism and not really severe enough to call it PDD-NOS. The final diagnosis that we got from our team was gifted and Mixed-Expressive Receptive Language Disorder.  He also has semantic-pragmatic deficits, which raised the issue of whether he actually has Semantic Pragmatic Disorder, which in the USA is classified as a specific language disorder, but in the UK is classified as a form of high functioning autism. The speech therapists decided that it's more MERLD than SPD, but it's still murky to me. Some days I wish that I had an ASD dx because then my insurance would pay for this stuff and I would get more support from my school district.

We gave up on labels (except as a short hand when we're trying to explain to other people), and just treated the deficits.  DS1 made huge progress with behavioral interventions and speech therapy.  He also did a social skills/speech camp last summer. It's all been very useful. He's happier and more social and most of his symptoms are greatly improved.  (Outcomes are better when IQ is higher.) We've been at this for two years, and we're going to take a break this summer. I expect we'll need more therapy before junior high starts and during that adjustment period, though.

Hang in there. It gets better.

[SilverLace]

Originally Posted by Tigerle 

So while I don’t mind the testing, I don’t want a diagnosis – we can get services on private insurance, but probably will get nothing but grief from schools...however, if they end up confident it’s Aspergers – so be it, I guess. I won’t stop the process now.

Edited to move the link to my 'Bermuda triangle' thread to the bottom...http://www.mothering.com/community/forum/thread/1282753/update-we-appear-to-be-about-to-enter-the-bermuda-triangle-of-giftedness-spd-and-ad-h-d

It may be different where you are, but where we are our child could not get any services covered by insurance until he had a diagnosis.  Also, we did tell the school because it helped in our case, but that was totally voluntary and the school did their own assessment too.  Here a school assessment process cannot give a diagnosis, it can only identify areas of need.

[joensally]

I'm glad it went well overall, and it sounds like the psychiatrist was thorough.

I would ask the psychs what tools they'll use to assess.  I would ensure that they're using standardized tools specific to ASD diagnosis (ie ADOS and ADIR) rather than subjective rating tools.  An IQ test alone won't identify ASD.

And remember that he's 4 :).  He's got plenty of time to develop.

I just read on a thread (I think in SNP) that in gifted kids the social-emotional can develop later as the development is a bit reversed (ie cognitive surging ahead of social-emotional).  This makes intuitive sense to me, as when kids get older they can do more things simultaneously (ie social and cognitive), and when you add the complicating layer of sensory sensitivity, it's little wonder some developmental areas are ignored for a bit with some kids.

I highly, highly recommend the materials from Michelle Garcia Winner.  There's lots of good stuff in there, and some of it is comic book based which makes it great for many kids.  We own Social Detective and SuperFlex (I've heard the second comic isn't so great).

http://www.socialthinking.com/books-products/superflex-curriculum?page=shop.browse&category_id=37

[Tigerle]

Quote:

Originally Posted by joensally 

I just read on a thread (I think in SNP) that in gifted kids the social-emotional can develop later as the development is a bit reversed (ie cognitive surging ahead of social-emotional).  This makes intuitive sense to me, as when kids get older they can do more things simultaneously (ie social and cognitive), and when you add the complicating layer of sensory sensitivity, it's little wonder some developmental areas are ignored for a bit with some kids. 

Yes, again and again we come back to the same question "is it a socio-emotional delay or is it just intensity plus a late-developing frontal lobe?" However, discussing this objectively with a stranger who has just met DS I have rather gone over to the delay camp. Not the ASD camp, mind. Like i said, I have a hunch that the label won't fit - now where have I heard that expression last?

For instance, she asked him whether he liked having a sibling and what he liked about having one and the thing DS came up with was it was "practical". When she asked him to clarify, he explained that it was practical because we had all his old baby stuff that DD could use and when she was done using it, we could give it away to other people having babies, or if it was broken we could throw it away but that it didn't matter because the factories were going to keep making more baby stuff. Listening to him, it was the first time an answer of his struck me as really emotionally odd.  

We had a very relaxed afternoon with lots of sensory play - after going through all the suggestions from numerous posters I''ve found that this calms him the most, whereas lots of movement just both tires him and revs him up (and he easily catches cold when tired and outside, he's delicate in that respect, and he hd a croup attack two nights ago). I have a feeling that he does so much better in summer not because he gets to run around more but because he gets to spend hours in the garden messing about with water, sand and pebbles in the sandbox. So now we eat a lot of rice and lentils, and there is playdo and FIMO stuff all over the house.

The funny thing is, just considering Aspergers has completely reframed his most annoying quirks in my mind in a way that thinking of it as maybe SPD or AD/HD never could. Like I'd never get mad at a kid with a disability for being unable to run I've suddenly discovered new wells of patience and tenderness. There are areas of growth, and we'll help him grow. It's not our fault - neither his or mine.

[Tigerle]

Originally Posted by RiverTam 

*big hug*

We went through this with DS1.  He had lots of ASD traits, but Asperger's and not Autism and not really severe enough to call it PDD-NOS. The final diagnosis that we got from our team was gifted and Mixed-Expressive Receptive Language Disorder.  He also has semantic-pragmatic deficits, which raised the issue of whether he actually has Semantic Pragmatic Disorder, which in the USA is classified as a specific language disorder, but in the UK is classified as a form of high functioning autism. The speech therapists decided that it's more MERLD than SPD, but it's still murky to me. Some days I wish that I had an ASD dx because then my insurance would pay for this stuff and I would get more support from my school district.

We gave up on labels (except as a short hand when we're trying to explain to other people), and just treated the deficits.  DS1 made huge progress with behavioral interventions and speech therapy.  He also did a social skills/speech camp last summer. It's all been very useful. He's happier and more social and most of his symptoms are greatly improved.  (Outcomes are better when IQ is higher.) We've been at this for two years, and we're going to take a break this summer. I expect we'll need more therapy before junior high starts and during that adjustment period, though.

Hang in there. It gets better.

Thank you, that is all helpful information! I was thinking pragmatic deficits too - not sure whether that is a stand-alone diagnosis here. I am already resigned to dealing with some murkyness; after all the sensory issues come into play with Aspergers too AFAIK.
 

 It may be different where you are, but where we are our child could not get any services covered by insurance until he had a diagnosis.  Also, we did tell the school because it helped in our case, but that was totally voluntary and the school did their own assessment too.  Here a school assessment process cannot give a diagnosis, it can only identify areas of need.

 I probably wasn't very clear on this as I wrote it. Heck, I am not clear in this in my mind. I assum we may have to get a diagnosis of some kind  - but I'd rather not have a diagnosis that screams special ed the way autism does, because we'd be up a creek educationally - private schools aren't able to take a child that has been "designated" (for lack of a better term) special ed (not even the private Montessori where he is doing so well in the afternoon K class), public school don't have to and can shunt you off into special schools (no, not special classrooms or programs, special schools) and inclusive programming, as mandated in this UN convention and thus federal law, is in the experimental stages.

Insurance for medical serveices isn't much of a problem where i live. Special educational needs are.

[Tigerle]

Originally Posted by joensally 

I highly, highly recommend the materials from Michelle Garcia Winner.  There's lots of good stuff in there, and some of it is comic book based which makes it great for many kids.  We own Social Detective and SuperFlex (I've heard the second comic isn't so great).

http://www.socialthinking.com/books-products/superflex-curriculum?page=shop.browse&category_id=37

You know that I'll buy anything you recommend by now, don't you?  You should ask for kickbacks.