I'm back! There's been so much discussion on this post (great discussion!) - I may bounce around a bit to get in every thought that's crossed my mind on this -
First, re my ? about speech therapy:
He's had a little bit of speech therapy at school - one session per week - with a speech language pathologist. I'm hoping he qualifies again this year - I'm still waiting to find out.
Speech therapy (once per week, outside of school) has been *the* one therapy that has helped my ds with his expressive language disorder. Most of his therapy has been directed toward just getting his thoughts out (verbally or written), organizing his thoughts, and developing his written expression (adding descriptive detail etc). He is the only kid like him that his speech therapist has ever worked with, and she's basically developed his therapy program as she's worked with him. The differences with him vs her other clients are first, his high IQ - she had never seen a 2e kid before, and second, he doesn't have any kind of apraxia (I think that is the term - for physical challenges with vocalization?). He will tell you that he just doesn't "know what to say" - and it's not like a kid who has ideas but doesn't know exactly how to put it in words or who is afraid they won't say something correctly - it's like he literally is stumped by the request to come up with anything, like there's a huge void in his brain for that particular request. He's a very concrete thinker - his struggles with expression first became apparent to *us* (parents) when he wasn't able to deal with open-ended writing assignments at school (started in 2nd grade). When he had writing assignments at home he would just melt in frustration and not be able to write even a simple sentence. By the time he was in 4th grade he started telling us he had some of the same challenges with getting his thoughts and ideas out even when it was verbal conversation - that's when it finally dawned on me that maybe an SLP could help, and around the same time I read something about speech therapy for gifted kids who had disorder of written expression.
Once we made that connection, it was also easy to look back in hindsight and see some clues from when he was very young. He didn't start to talk until he was three, and he didn't even babble. I can remember every speaking-type-sound he made between 11 months (the first one) to 3 simply because there were so very few of them. At 11 months his dad was walking out of the room in the morning and he said "bye". I thought cool, he's going to start talking... and instead he never said "bye" again. There were one or two other times when he would say a simple word, try it out, then never say it again. I'm sure you're thinking, um, why didn't we take him for speech therapy then, but we had no clue there was any kind of anything going on other than him being a quirky kid who didn't feel like talking. He seemed to be on-track developmentally in all his other areas, his dr was never concerned at well-kid checkups, and his receptive language was a-ok. Once he did start speaking everything was in long, complex sentences so for sure we thought everything was a-ok at that point - but the flip side of it is, he wasn't being asked to do the type of expressive output that he is challenged with until he was in 2nd grade at school - and then we chalked his initial lack of output and classroom behaviors to either being bored or being a perfectionist because by then we knew he was clearly a really high IQ kid.
Our ds started in private speech therapy because he didn't qualify for speech through the schools (he does have an IEP for SLD/written expression, but the school district doesn't consider speech therapy relevant to that SLD). So we've gone with private speech therapy and even though it hasn't been quick (or easy) ds has made tremendous progress. The key has been his SLP - she cared tremendously about helping ds and was challenged (in a good way - she was interested) in finding a program that would help even though she hadn't worked with a child with his set of challenges before.
So that's our ds. The other thing I'd mention about him is that as he's gotten older he's been able to describe in better detail what's challenging re expressive language and that's helped a little bit too.
He also can't remember the order of the days of the week and the months of the year, in either language. He's eight! He understands the concept of "before" and "after" but he can't remember the sequence the days and months are in. Not true with numbers or letters individually (he gets quite insulted when you ask about those).
I wonder if there might be some clues in the testing he's had (WISC etc) that could help understand the sequencing challenge. FWIW, my ds is a different kid with additional diagnoses, but his challenges include mixing up directions and things like that, and the neurospych tests (including the WISC) provided clues - not the complete diagnosis, but clues that pointed to the need for other tests (many of which your ds has had :)), that helped us better understand what his challenges are.
ASD is often misunderstood, even in people who work in the field, so I always recommend to people that they keep an open mind to potential ASD therapies and solutions, even if they don't believe that's the right dx for their child. They can help a broad range of kids. Both my boys are ASD (one mild and one moderate), and you're listing lots of similar qualities to them, from sensory problems to repetitive behaviors while lost in their minds to verbal language difficulties. Of course, there are a lot of coexisting spectrumy things in many kids, so take that for what it's worth.
&
[quote=CCN]Or maybe I am being too cynical. Like my family doctor says, with issues like these that aren't diagnosable medically, it always comes down to opinion - it doesn't necessarily have to be political.
I think that has become less and less true over time. There is still some gray area, but there are standardized tests that do help to quantify even things like social behavior. The trick now appears to be to find the provider with enough expertise to use the right tests and read them correctly: there are lots of people who are not up to date.
I agree with mgl and DeeDee. I think that diagnosis can be difficult in part due to overlapping symptoms between different types of disorders. Our neuropsych has a chart which I *really* need to find so I can post a link here that shows the overlap in symptoms between ADHD, ASD, and whatever category it is my ds fits into (he is diagnosed with Developmental Coordination Disorder). It's a Venn Diagram that shows each of those three categories and lists the symptoms of each - with each having some unique symptoms but all three have many overlapping symptoms. My ds was seeing a counselor for awhile to help with learning how to deal with anxiety, and she was convinced he was on the autism spectrum because he would seem to blank out sometimes and be totally lost when she asked him a question. Our neuropsych, otoh, felt she could completely rule out autism, and based on what I've seen of autism questionnaires and descriptions of what is required for a diagnosis I think she's correct and what I've seen of ds' social functioning I think she's correct. Back when he was first having struggles at school in 2nd grade, ds was diagnosed with ADHD (inattentive) by his neuropsych, but that was based purely on behavior ratings and in large part impacted by his then-teachers perceptions of his behavior in the classroom. Once we had accommodations in place for his disabilities (which had been undiagnosed until that eval) the behaviors that had looked like ADHD disappeared. We looked at ADHD again as he was going into his IEP eligibility process in 4th grade because the school raised the question, and he had a thorough screening by his ped at that time - his ped felt that the behaviors that looked like ADHD were instead due to a combination of DCD and high IQ. His neuropsych also screened for ADHD again when she saw him in 5th grade and this time around the teacher ratings (filled out by two teachers) didn't place him as ADHD at all.
All the different possibilities and symptoms can be so confusing, but like DeeDee, I've found that having quantitative data wherever I can get it has been helpful. And although I feel like now, at 12, I have a good understanding of ds' challenges and agree with his diagnosis, I sure wasn't there when he was 8, or 10. It took quite a few years of therapy of different types, accommodations for his challenges, and a lot of "data mining" - 2 trips to the neuropsych, IEP eligibility review at school, input from 2 counselors, ADHD screening through his ped, occupational therapy assessment + therapy, speech assessment + therapy = it was a *long* road to get to where I feel like I have that understanding of what his challenges really are and to feel comfortable that he has the correct diagnosis. I did a ton of research along the way, and talked to as many other parents as I could (mostly online). We tried a lot of different things along the way, some helped, some didn't - but even the things that didn't help ds with specific challenges gave us more information, so they were at least helpful in that way.
I've rambled so much now I can't remember if there is more I had to say - lol. I hope some of it helped!
Best wishes,
polarbear
