Hi All- I'm totally flummoxed. My DS9 had an eval about 6 weeks ago for LD, etc. Psych hadn't received the report from his teacher but told me that he didn't see Asperger's or LD. He just saw an anxious, depressed HG kid. We discussed at length homeschooling as being a great alternative. I received the written report yesterday, and it was completely different. He diagnosed mild PDD-NOS and possible dysgraphia. The report said that the teacher eval coincided with behaviors that the tester observed as well, but that we don't see at home near as much. He recommended special services as well as continuing in the gifted classroom, with access to online math for further acceleration. Well, I have him home now. He is MUCH better but about once a week there is an off day, very rigid and needs lots of easy handling to talk him through. My concern is- Did I pull him away from services that he needs? Can I do them at home? I felt comfortable taking on the ability to teach him but I don't know about the special ed teacher role. Although, since he's better now at home, I'm probably on the right path. Thanks everyone-

Hi! About the PDD-NOS, I have to say that I am not a fan of that lable because it really doesn't tell you much...and especially Mild PDD-NOS, I would suspect that many HG+ would appear to have that. Not sure if they shared with you what that diagnosis means (hopefully they gave you some information) but basically it means that they met some of the criteria for a PDD (such as autism or aspergers) but that he did not fully meet the criteria in order to diagnose him. And then to add the word mild in front of it would mean he meets even less of the criteria. I was a clinical social worker (now school social worker) for years and I did diagnose PDD-NOS at times, but not often. I saw some quirky behaviors and some socialization issues, but I think that often comes along with the territory of HG/PG kids. I certainly have a quirky PG kid that I suppose may meet the criteria for mild PDD-NOS in some ways. It's hard to say as I haven't met your DS at all. If you are questioning it you may want a second opinion with someone who is familiar with HG kids.

I give you much credit for starting the homeschooling! I know that homeschooling works great for lots of kids and wish you the best. And if you give it time and it is not working out, you can always change your mind. It sounds like the school is being supportive which is great. I don't think that schools would support a child with PDD-NOS any better than you could on the teaching end. And I am glad that you are noticing some positive changes in him! Good luck!

hi learning mom
we are in the same boat with a quirky kid with a PDD-NOS diagnosis. My take on how the diagnosis works is that there are lists of symptoms that fall into Language, Social, and Behavior categories. To have autism you must have 7 things that fall across all three domains. To have aspergers there is a whole separate list of (very) specific things. To have PDD, you can't have either aspergers or autism but have three "symptoms" from the lists. The funny thing about it is it says nowhere that those three things must be across the three domains in order to get PDD-NOS diagnosis. So presumably a kid who is socially ok but who has quirks of language and of behavior (such as fixation on subjects, or flapping hands).. can end up with the PDD-NOS label. However this totally misses the boat as far as PDD. Many think the social piece is the defining piece of it and without real pervasive social issues its just not really PDD at all. This is alluded to in James Webb's book. What is interesting is the DSM new version is currently being written and is streamlining the diagnosis as "Autism Spectrum Disorder" and eliminating PDD-NOS and Aspergers (which is controversial).. But what i do like about the new diagnosis is that it gets to the POINT. and demands a pervasive deficit in three domains in order to get a diagnosis.
irene

My feeling right now is that he falls into a gray area that may never be well defined. When I received the report form to evaluate him, I had to call back for clarification because what exactly is 'sometimes, often and always'. The teacher reported on Asperger's Disorder Scale (GADS) that he sometimes seems unaware of social conventions, lacks sublety of emotions and requires an excessive amount of reassurance if things are changed or go wrong. 'He becomes very preoccupied with certain subjects, dispays superior knowledge in certain areas and demonstrates exceptionl memory. States she 'was concerned that he becomes preoccupied with certain subjects in a manner that is much more intense than other children'. She also noted that he is very kind and loving child, has a zest for learning new things, can be very humerous etc... DS was in a full time gifted program that had a 98% entrance but lower numbers were admitted to fill seats. A lot of this resolved upon bringing home to homeschool. I starting to feel that the 'mild PDD' is a wimpy diagnosis but I don't want to fall into denial if something is present and needs to be addressed. Does anyone know what the special ed services would look like for that kind of diagnosis?

hi learningmom
my distrrict puts all kids on the spectrum (including PDD-NOS) into an "autism" classification and they receive mandated services. I am in New York State and i think the mandates vary from state to state. My son gets 1 period per day of resource room (just for kids on the spectrum), two group sessions of speech per week (to work on pragmatic language) and a paraprofessional that he shares with one other student. He also participates in an enrichment program. This setup has been great for him, though i sometimes disagree with the diagnosis. He gets so much help and i really can't complain. The diagnosis did open doors for all this. NOt all districts have this type of program, though.. and it all depends on the needs of the child.

It varies based on the school...but as far as schools are concerned that diagnosis can get him the same services that a diagnosis of aspergers or autism can get him if needed. might be some pull-out, social work services, social skills groups, etc. Or may just be classroom modifications. My feeling about diagnoses in general is that if it fits and it is helpful then it's not a problem. When it doesn't fit, or if there is no need for it to get certain services I don't see much of the point. I think it is normal to question it and doesn't mean you are in denial. I am full aware of the criteria for diagnosis and a lot of these PG kids have some elements of the criteria but are still not diagnosable.

For example, my DS5 (PG) used to be very sound sensitive (not so much any more) and used to spin in circles and started a bout of hand flapping for weeks that has since gone away. He has lots of little quirks here and there. Sometimes he doesn't recognize things that you would think he should (like last night we went to a school related event where he saw a friend from his class from the side and said "that looks just like my friend from school" but didn't realize that it was his friend. When I asked if it was him he said "I am not sure, but he is wearing the same shirt he was earlier today" LOL) He has great eye contact at times, and other times just zones off when people are talking to him. He is a very empathetic and caring child, but sometimes something can happen and has no reaction (like his sister could have hurt herself and be crying and he would say "mom, what is for lunch today?") I could go on with more little quirks because the list continues. He is who he is and we love him. Of course I could also make a long list of how he completely does not meet the diagnostic criteria for PDD, but you never know how things would turn out of a rating scale were completed on him. You have to look at the whole child. But like I said, if the diagnosis is helpful than it can't hurt. It's not like the diagnosis can't be taken away at some point if it doesn't fit.

Since I took him out of public school, we've been fortunate to have found a group of 6 boys that he really enjoys. They range from his ago to about 12 and we get together 2-4 times a week. He doesn't seem to be anymore intense than any of the others and they all seem to interact really well. This would have been different than what was seen in school. I see him as being very flexible at home unless a video game is involved. LOL. When we do school, there is still a puzzling tantrum that occurs about once a week and I'm not sure what it is yet. I think it's anxiety /perfectionism and that's the way I'm approaching it for now. It's helpful to me to hear what the services are in the school system, to see if I can arrange them at home or elsewhere.

Shellymos- We had an incident similar to the one you described with you daughter that just stopped me in my tracks. Flooded kitchen and he was discussing a video game. I just thought 'this isn't right'.

Thanks for the help-

You might follow up with the diagnosing dr. to make sure there are no crossed wires; why was the written report so different from the conversation? It's very legitimate to ask directly.

How are your DS's social skills? When he's with a peer, can he have a meaningful two-way, multi-turn conversation? The social impairment is one prominent thing that would differentiate a gifted kid on spectrum from a gifted kid otherwise; the non-spectrum kid can have a real conversation, even about topics that they don't obsess about, whereas the spectrum kid might only be able to have the conversation about their special interests, or introduce the interest into every conversation. The rigidity is a hallmark, too, but not a completely defining one IMO.

You might want to get a second opinion from someone who specializes in kids on spectrum; they might be able to tease out these issues more thoroughly and figure out what your kid needs. You may also be able to get services from your district (PT/OT/speech) even while homeschooling.

Dee

DS5 does this with other things too. I remember mentioning this before and lots of other people's kids did the same thing. The "spill reaction" (or lack of reaction) is classic...something will spill and he will say "oh no, I spilled it" without reacting to pick it up. Or he used to just stare at it spilling. He is getting better with this thankfully but it drives us nuts. I don't see a future as an EMT or something that requires quick movement : )


I am still waiting for "unique syndrome" or "quirky disorder" to become labels. There couldn't be actual criteria though because everyone is so different : )

LOL, there are lots of moments where I think things are odd with DS5 too. When in crisis situations like that, when you mention it to him does he get it? Like when DS is talking about something completely different while someone is hurt...when I explain it to him he usually gets it and is able to get how non-empathetic he is being. He generally is very caring and asks what is wrong and what others think and all that.

That is great you have found a good group for DS to mix with. I have noticed with our DS that he does much better with older kids, he does okay with kids his age but he doesn't interact verbally as much as just goofing around. With older kids and adults he enjoys conversation with them.

And about the puzzling tantrum your DS has, I am not sure but our DS goes through times and moments where he is more emotional about things and overreacts. It isn't that common and he is a very laid back kid...but when he gets like that we are always baffled.

In regards to the social skills, he's in good shape if it involves video games or Legos. There is definately the introducing the interest into every conversation. I also just read the article in the library here from the U of Iowa on ASD and giftedness. Wow. We definately get the meltdowns during 'downtimes'. I'm such a stickler for boredom is not my problem but that puts into a different light. Maybe it is PDD.

Hi, Learningmom-- with those social quirks, PDD plus gifted is possible, though as others note there are plenty of undiagnosed quirky gifted people too.

I'd pursue it just so you know for sure. Because the symptoms are distressing some of the time, and possibly in his way in having good social relationships, addressing them is a good idea. The special interest conversation gets less cute as they grow up.

If you do get the dx it will buy you some good advice about how you as his teacher should handle the meltdowns and work on expanding the social skills.

Dee

Learningmom, I am especially concerned about the apparent contradiction in:
"Psych hadn't received the report from his teacher but told me that he didn't see Asperger's or LD. ... I received the written report yesterday, and it was completely different. He diagnosed mild PDD-NOS and possible dysgraphia. The report said that the teacher eval coincided with behaviors that the tester observed as well, but that we don't see at home near as much."

If you can possibly have your child evaluated somewhere specializing in autism/PDD to get their expert opinion, I would do so. My oldest child was born with autism, and you would be surprised at all the contradictory diagnoses we received (and he DOES have the diagnosis). My son really does have autism (looks more like Aspergers now), but I can tell you these disorders on the autism spectrum are not well understood. I would not place too much confidence in any one opinion, ESPECIALLY given what you described (apparent flip-flop after getting the teacher's report). ONE teacher thinking a kid is on the autism spectrum might mean only that the ONE teacher did not connect well with your child. I have never heard of a child anywhere on the autism spectrum who does not exhibit many signs of it in most settings.

If this psych really thinks your child is on the autism spectrum (even if mildly so), I'm surprised there seems to be no mention of any interventions recommended outside school, or perhaps a call for further investigation at a center for autism (so you as a parent can get appropriate direction)? Maybe you live too far away from an academic center like that (where there would be an autism specialty program). Without a more thorough workup by people who really know autism in all its variations (even so-called "mild" PDD-NOS) I would doubt this diagnosis.

If I were you I might be tempted to try an "experiment": since you are now homeschooling (great choice, and your child is lucky by the way!), maybe you can send something in writing to this psych (friendly tone of course) and say you are concerned since your child now has this autism spectrum diagnosis and you are homeschooling, you are looking for some expert direction on helping your child as much as possible. You could ask for more specifics on what led the doctor to diagnose the PDD-NOS (never mind the "mild" since I think officially diagnoses don't come as "mild" or "severe" but are just there or not there). Tell the psych you are following up at an academic center specializing in autism (maybe UCSF Langley Porter Psychiatric Institute?) or if you know another highly regarded one close to you, maybe name that one? I wonder how this psych will respond. I wonder if the response will in any way show the level of confidence (or lack of it) this person has in having applied that diagnosis with your child. The response might also reveal something about this psychologist's familiarity with such centers (who knows, maybe he worked at one?) Alternatively, we may discover this psychologist is not terribly familiar with autism in all its manifestations. PDD-NOS is a serious diagnosis, and I think it is reasonable for you to take it very seriously, and follow up accordingly. Good luck.

Thanks so much for all the wonderful input. Really, so many things I hadn't thought about. This doctor it active in the gifted community nationally and I was really hoping for a good evaluation. He did refer us to the local children's hospital/university autism center for evaluation. That should be next I guess.

Wow...that sounded like me at that time, except for my giftedness pertains to the verbal area...I don't think you need to pull away from the services just yet, but I'm not sure about the online courses (since my courses are mostly on the high-school area of BBC, LOL). I'm glad that he's thriving, though!

Sometimes even as a homeschooler, the county will provide walk-in speech services, if necessary. So, opting out of the IEP does not have to be done. You could find out if any of the other services they are providing him in-school can also be provided as a walk-in. Just a suggestion. Good luck!