I haven't been around in awhile, but my son has just been given an additional diagnosis (if you can believe it) of PDD-NOS. I would love info/websites if people have it. We have a PPT to address the additional diagnosis on Jan 6th.

By Mommmie on Thursday, December 22, 2005 - 10:04 pm:

There are parents with kids with a PDD-NOS dx on www.conductdisorders.com. (Go to forums)

Also check out http://www.childbrain.com/pddassess.html where there is a questionnaire/screening thing for PDD.

Actually that website has a lot of good info http://www.childbrain.com/pddq6.shtml

I don't know anything about it myself, but have seem others talk about it on conductdisorders. (My son is LD/ADHD.)

By Feona on Friday, December 23, 2005 - 07:04 am:

He must have a mild case because usually this is diagnosed when they are 2 or 3. I don't trust these diagnosises.... I would get my own evaluation. Unless you think it would help him in some way.

MY sister in law was saying that if you have that diagnosis you can get what is it called social security disability payment when older or now. I don't know if it is true.

I thought that was two or more delays? Like social and speech delay?

By Reds9298 on Monday, December 26, 2005 - 10:31 pm:

You can get disability for ADHD. I don't agree with it, but you can. As a teacher I had parents down my throat with paperwork to get diability payments.

By Lauram on Monday, January 2, 2006 - 04:39 pm:

It's definitely not a mild case! It's also complicated with many comorbids. He also has diagnoses of Tourette's, ADHD, OCD and sensory integration disorder. He has a full time aide in third grade and is very bright. Not mild, though! Just very complicated. We have known there were issues since 2 1/2- no one could figure it out until now. He has significant social delay. He doesn't use imaginitive play. He has lots of difficulty understanding tone of voice and facial expressions. He has lots of trouble applying what he knows in social situations as well. Right now his IEP has writing and social goals. I'm fighting for language goals right now. This was our own evaluation. His psychiatrist (very well-respected) and his psychologist worked on it collaboratively. They were debating between NVLD and PDD-NOS. Ultimately, after further evaluation, they decided on PDD-NOS because his nonverbal scores were in the gifted range. I've read that it's sometimes referred to as atypical autism. That makes a lot of sense to me.

By Tink on Monday, January 2, 2006 - 06:12 pm:

I've done so much reading on the diagnoses under Autism Spectrum Disorder and it sounds like your ds does have many of the "trademark" characteristics. With his other diagnoses, no wonder you've had so much trouble getting this pinpointed! I really hope you're able to get the services he needs now. Getting a label can be a mixed blessing. Yes, it makes services more available but it means that you've just got one more hurdle to get over. Good luck, Laura! You're working so hard for your ds and it's bound to pay off. I'm sorry I don't have any websites or info to pass on to you.

By Lauram on Monday, January 2, 2006 - 07:09 pm:

Thanks, TInk. Mommmie- I have read the childbrain website but not the conduct disorders. I'm going to look through that one. Thanks!

L

By Kaye on Monday, January 9, 2006 - 12:50 am:

Laura, I have been meaning to respond to you. We are going through the same thing with my little guy. He is also atypical, he has lots of issues, but is overly imaginative, so we have struggled with a dx. These out of the box kids are just hard to define sometimes. I am in the process of reading up and going for new info. I will post if I come up with anything of interest.

Post us on the update of your meeting.

By Lauram on Thursday, January 12, 2006 - 10:41 am:

Kaye- It is hard when they don't "fit the mold." The PPT went well. They agreed to language testing- but not the typical language eval. They are doing the CASL (my request) and are testing pragmatics, nonliteral language and supralinguistics. They are also doing synonyms and antonyms (I think that's over the top- but who am I to complain). We will have the next PPT on Feb 27th. At that point, we will address the new testing and the changing of his primary diagnosis. I also am having an evaluation written privately about the autism testing he had done. I have to do an interview next week with the psychologist and then she is going to write it up. ALso, I have enrolled my son in a social skills group (with an amazing repuation) for the Winter/Spring session. I am really looking forward to this, because I think it's really going to help him!

By Kaye on Thursday, January 12, 2006 - 03:36 pm:

Soudns like it is moving and that is good.

We signed my son up for something called onstage kids. And although he will never get on stage, it is amazing for him. They do teach those social skills, like eye contact and body language. And they do it in such an exagerated way he gets it

By Pamt on Thursday, January 12, 2006 - 07:36 pm:

Laura, The Test of Problem Solving (TOPS) might be a good one for your DS. How are they testing supralinguistics? Just curious.

By Lauram on Sunday, January 22, 2006 - 04:32 pm:

Hi, Pam. I just saw this. They are using the CASL. I'm thinking he is going to (has already) bombed the supralinguistics. They did one section on antonyms, synonyms and sentence completion (which when they told me that I thought it was overkill). He came home and told me that the spl told him he scored between ages 14-21 for that. He came home the next day and said he scored at age 9. (He'll be 9 in April). Then it appeared to get harder for him as time went on.

I'm taking him to a social skills group starting in Feb. I'm hoping that is really going to help him..... He's excited about it (and understands what it is for)

By Kaye on Sunday, January 22, 2006 - 11:00 pm:

I just found out mine bombed the supralinguistics test too, but I am not sure how they tested it. It was just on the speech paperwork.

By Kaye on Sunday, January 22, 2006 - 11:04 pm:

i just went and pulled paperwork. He testing in the 13th percentile for supra on the CASL. (he also did poorly on nonliteral-10% and inference-23%).

By Lauram on Monday, January 23, 2006 - 04:55 pm:

I don't have any data yet, but I'm thinking that those are the areas my son is going to bomb as well, Kaye.

By Lauram on Wednesday, February 1, 2006 - 06:23 pm:

I just got a call from the SPL. We are meeting next week to review the testing. GULP.

By Feona on Wednesday, February 1, 2006 - 06:46 pm:

We did brain mapping with a neuro psychologist.

He also did all the other tests. IQ and other tests for developmental disorder and aspergers and pdd.

The neuro psychologist ds has no diagnosis. They said his brain was different than a person who has aspergers or pdd. They said he has visual tracking problem and impulse control issue. They did have a treatment with a computer program that was to help him with visual tracking and impulse control. It was twice a week for about six months no long breaks allowed. They have what is it called? clinical trials that say it works. We didn't do it yet since I am uncomfortablely pregnant.

The insurance would have covered all the treatment and testing. Of course we didn't do the treatment yet. But the private testing was totally free.

By Kaye on Thursday, February 2, 2006 - 06:16 pm:

I heard about that testing bit Feona. I ahve heard mixed review whether it helps or not, you will have to keep us posted.

My son doesn't officially have PDD dx, but he is still considered on the spectrum because he doesn't fit any where else. As much as you don't want a dx for your child, trying to get services without one is a real bear. There is so much more offered for prek and K students, compared to what you can get at older grades. I subbed all day in my sons class, it is so easy for me to forget how NOT normal he is. He really just isnt' like the other kids. Sometimes that is good, but he is a lot of work in a regular classroom where they are trying to get work done.

By Lauram on Wednesday, February 8, 2006 - 06:19 pm:

GRRRRR... I met with the SPL. She told me my son was just oppositional. That's the one dx he DOESN"T have! LOL! I was fuming. She said she did a new game with his class one day and had to kick him out because he was calling out the answers. She said the next day he was calling out the answers and she told him to raise his hand or he couldn't play. She said then he did a great job. I explained that she TAUGHT him the social rules explicitly and that's why he was successful. I also told her that I don't know one eight year old who intentionally misbehaves and doesn't want friends. I put a call into the principal....

By Kaye on Wednesday, February 8, 2006 - 06:39 pm:

gotta love teachers like that....really some kids just have to be taught

By Lauram on Thursday, February 9, 2006 - 05:31 pm:

I'm calmer now. I was fuming yesterday. I talked to the principal today. They are going to add it to the IEP. I talked to the SPED teacher. She's working like a dog. It infuriates me that some people do all the work...

By Bugbean on Tuesday, February 20, 2007 - 11:15 pm:

Lauram,

Saw your post and wanted to help. The DSM-IV has a classification for
Pervasive Developmental Disorders (PDD). These children have to have the
following characteristics. 1). A QUALITATIVE difference in their social
behaviors (i.e. they don't relate to people like you would expect them to).
2). A QUALITATIVE difference in their communication skills (i.e. ranges from
minimal communication to communicating in a way that seems different to us).
3). Stereotypic behaviors (e.g. exaggerated things like flapping all the way
to just needing very strict routines). Under the umbrella of PDD are five
different categories. One is austim, one is child-disintegrative disorder,
one is Rhett's syndrome, and one is Aspberger's syndrom. The fifth category
is when a child has the characteristics listed above, but doesn't fit in the
specific types of PDD. The they are given the diagnosis of PDD-NOS, or
Pervasive Developmental Disorder - Not Otherwise Specified. Hope this helps.

By Bugbean on Tuesday, February 20, 2007 - 11:25 pm:

Laurum,

Sorry, one more thing. Also, as far as the CASL goes, there are some tests on there that may seem VERY strange to a parent. I can definitely see that, but it is important to understanding how kiddos communicate on a whole. Those antonyms and synonyms are a way to see how kids look at the relationships between words and word meanings. When all is said and done, the SLP shouldn't be looking at "Can this kid do antonyms and synonyms," it should be more like, "How does this kid look at words and how they are related." It's just as important to see HOW they got it right or wrong as IF they got it right or wrong. Say you have two kids and you ask them to tell you the opposite of "sit." If one child says, "down" and the other says "run," you'd have to consider how this fits in to their language patterns overall. I hope I'm making sense here.

On a side note, you may consider talking to the principal about getting the SLP some continuing education on Autism Spectrum Disorders. Her Dx of ODD (if she actually diagnosed this she is outside of her scope of practice) is disturbing to me.

By Lauram on Thursday, February 22, 2007 - 07:57 pm:

Actually, I'm not sure why this was so far at the top. I actually wrote this post LAST February. Funny how time flies! We just finished up with yet another eval. That means that we have 3 drs at the moment calling the same problem something different. His psychologist still maintains it is PDD-NOS. His psychiatrist says it's "clinical" NVLD (because his neuropsych testing does not show NVLD, but that is how he "presents." This new dr- a developmental pediatrician- was hired by the district and he says it's a pragmatic language disorder- specifically in the area of social language. It's been crazy. We haven't gotten an official report yet, but the Director of Pupil Services maintains that it is NOT a pragmatic language disorder and if the report says that it is, then "he is going to have a problem with the provider." He does now have language goals and objectives, he sees a social worker, has a 1:1 aide (though that was recently removed on a trial basis- the dev. ped flipped out when I told him that one), more SPED for continued writing issues and executive functioning, increased psych services including social coaching in the classroom, gifted services (though they refuse to officially identify him- pretty much because they can't get him to sit through a test- not even a WISC), and specific deescalation time built into his schedule to process his day. He also has an accomodation of OT breaks as needed, though he doesn't qualify for OT services (go figure...). This is all new as of last Friday (and he's been on vacation all week). We were pretty much on the verge of pushing for outplacement, so we'll see how this all works out....

By Jennings111 on Tuesday, May 15, 2007 - 10:49 am:

autismlink.com