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Did they tell you what piece was missing to be considered either ADD, ADHD or ASD? Both paeds we have seen tend to consider all of those disorders either symptoms of or commonly co-morbid with some sort of umbrella condition like ASD, ADD or ADHD, particularly once you start seeing a whole cluster of them not just one. My question is not doubting you, but curiosity as to the different ways different professionals think about these things (my own DD has CAPD, dyslexia, SPD and gross motor issues, all picked up before the Aspergers diagnosis).

Just curious: My DD's cluster of dyslexia, dysgraphia, dyspraxia, math disability (weaknesses in visual perception, fine motor and working memory) coupled with super high verbal led to an "NLD-ish" diagnosis. She is missing the social component for an actual NLD diagnosis. In other words she does not have the issues being discussed here. Did anyone ever mention this one as a possibility for you?

I had this thought too-- again, not doubting you, ABQ, you are a very perceptive parent. But your DS does read as being very like mine, who has the ASD diagnosis. There's enough of a dash of autism in there that I'm really surprised your DS didn't get at least a PDD-NOS dx. But yes, practitioners do differ tremendously in how they make ASD diagnoses.

DeeDee

Ok ... what is PDD-NOS?

For ADD and ADHD - he's been screened several times by different evaluators - two neuropsychs (although the last I didn't trust his results at all for any of the tests), a psychiatrist, a psychologist and the school diagnostician. He doesn't score high enough on any of the screening tests to indicate it - and I'd agree.

For the ASD, he doesn't have a couple of the major traits - he has a lot of friends, is a leader, has a strong sense of humor and a couple of the other traits. At the moment I forget which ones. The traits he does have, he has to a pretty strong degree - he will still go to the nurse thinking he is sick and not associating his headache, stomach ache, etc. with anxiety over the test he just took or the problem he just had with a teacher chewing him out for something. He is very literal. Very. He doesn't judge space correctly - always in my way when we're walking, etc. Doesn't always read social cues or pick up on them.

So thus far, the psychiatrist wrote a letter to the evaluation team at the school saying he was being followed for an eventual diagnosis which might include ... and then he threw the gamut of possible diagnoses in the list so that they could use the letter to allow for behavioral modifications in his IEP. But this doctor deals with a lot of autism and gifted kids and says he thinks my son's is more related to his high IQ (which has yet to be detected on a standard test but is very obvious) than to autism. His advice is that if we can get accommodations, there is no need to put a label too soon.

Then again, his comments about whether it is or is not ASD didn't ring quite right, so I'm just in a big bowl of muddle soup.

Pervasive Developmental Disorder, Not Otherwise Specified (tells you nothing, right?). The DSM-4 left open the possibility of saying "this isn't Asperger's, it's not classic autism, and yet the person has many features that suggest he's on the autism spectrum"--those cases that don't meet the AS or "classic autism" definitions have typically been called PDD-NOS.

Technically, that label has now been absorbed into the diagnosis of "autism spectrum disorder" in the DSM-5. It's all "autism" now. But it has been widely reported that none of the borderline cases should now be considered off the spectrum-- that is, if someone was likely to be PDD-NOS before, they have "autism" now, and best practice right now is that doctors are supposed to use the DSM-4 and DSM-5 in tandem to calibrate their judgments during the transition.


Has he ever had an ADOS? This is generally considered the most trusted test for ruling autism in or out.


Sense of humor does not let you rule in or out autism. Our DS 10 (who definitely has autism) is quite funny, and has always understood puns and other kinds of non-literal humor.


Some of the anecdotes you've posted in the past have been strongly reminiscent of my DS.


Is your doc generally label-resistant? I guess my feeling on whether it matters to have the label is, yes and no. True, if school is working, you might not need the label; but we have found that the label gets us out-of-school services (social skills training, CBT targeted specifically to his deficits). The label has also helped us both explain DS to others AND raise our own awareness of what to work on, what to watch out for, what is likely to arise, helping us prepare for the next hurdles.

I'm not label-shy... I think it's good for a kid to have a handle on his challenges. Sounds like yours does, so the label may or may not matter to you.

Interesting that his IQ has never registered as high. One neuropsych told us that IQ scores tend to get higher and more coherent (less spiky) as autism is remediated. We have found that to be the case; DS only looks more and more extreme in his giftedness as we work on his ability to understand other people.

I'm not trying to challenge you or your docs. Ultimately, you decide whose professional judgment you trust, and then you take their advice seriously.

It's a very interesting business, isn't it.

DeeDee

Very interesting. My daughter also has a lot of friends but is literal (not extremely so--it's not a big problem, but is notiecable), has a poor sense of space, and shows some other ASD red flags as well as some ADHD flags. I think she may also have SPD, which sort of comes and goes. She is considered mildly low in muscle tone. My other child is officially diagnosed with hypotonia but has no symptoms of anything SPD-ish or ASD-ish.

We have seen some things really improve with time with no intervention. Others remain of concern. The psych who evaluated her felt that her anxiety was causing the symptoms we saw as ASD-ish.

She is not having any issues whatsoever at school or with friendships. We have behavioral concerns at home that seem mostly driven by emotional intensity/depression, but I also feel she seems jittery/dysregulated and unfocused. No one seems concerned about that at school at this time and she is a straight A student, so I don't know what to make of that.

I don't consider it a challenge at all, DeeDee. If I have learned anything raising my son, it is that I don't have the answers sometimes and can use all the help and advice I can get. Then I have more tools at my disposal to figure out what works best for my kiddo.

And you're right, some of his traits make me think, oh, this is definitely autism. But then other times I am convinced just as strongly that it isn't. I'm not shy of labels, but I also want to make sure we take enough time to make sure it is the right label.

ABQmom - we had to try twice to get our DD diagnosed (with aspergers), the first time it seemed like they agreed and then it went south in a quite mystifying way, we actually suspect they lost their notes or just noted hard (bordeline) test results and forgot their "soft" impressions which had guided them in giving their opinion verbally on the first day. Second time she was diagnosed, though it was very clear that one if the two opinions was unconvinced and gave the diagnosis grudgingly. The other opinion provider believed us, agreed it's mild but there. I swing between thinking I am crazy to think she is anything but normal and knowing that she is distinctly not normal and the label will help her understand her own difference and help us get her the services and understanding she needs to adapt and thrive. We could easily have not labelled her, she's borderline, but there are increasingly questions she asks us to which the appropriate answer is "because you have aspergers dear, but we can help you work on that". To me that is a better answer than "I don't know" or more negative labels she may get from teachers or peers in response to those issues, I'd rather tell her she has aspergers, it makes her think differently, than "you're lazy/stupid/annoying/rude/deliberately difficult". Certainly when there are issues at school teachers are more responsive to a label, partly because a professional has said it's "real" an partly because the label tells them allowances need to be made and hopefully what kind.

I guess I'm really in no hurry to put a label on it as long as we have the accommodations in place at school. I don't want him saddled with a label that is hard to get rid of in my haste to get a diagnosis, and since it isn't really cut and dried, I'm ok with the "time will tell" approach. But when I talk about difficulties with him, we talk about his Aspergers traits, and he is also able to relate to his dad who has a lot of the same traits.

ABQ, that makes sense to me. If all the accommodations and therapies he needs are available to him, the label might be superfluous. For our family, it's been extremely helpful to have a label-- but I'm well aware that not only is every kid different from every other, but health care and education are also local matters, differing vastly from place to place. Everyone's mileage may vary.

DeeDee