Should I fight for Pervasive Developmental Disorder (PDD) diagnosis??

Discussion in 'General Parenting' started by Ktllc, Jan 16, 2012.

  1. Ktllc

    Ktllc New Member

    I went on the link that SRL had posted in the Early Childhood forum and fill out the Pervasive Developmental Disorder (PDD) assessment scale. And V actually fits the criterias of "mild Pervasive Developmental Disorder (PDD)". I did the questionaire twice because the first time he had a score of 75 and I thought maybe I exagerated the intensity of the problems (checked moderate when maybe I should say mild). Well, he then has a score of 60 which still falls in the "mild Pervasive Developmental Disorder (PDD)" category. He also has a few "moderate" or "mild" in each 3 categories. So no doubt: he fits the diagnosis.
    It is pretty much what everyone else has told me on this forum and what I have been suspecting.
    Now, why is that the professionals tell me V is not on the spectrum because he understands non verbal communication??
    Is it worth fighting for a diagnosis just to shut the school up about the existence of a real problem??
    I'm not 100% sure but I believe we are already using all of our local resources as far as therapies go. For example, social skills group therapy had been suggested, but we don't have it where we are...
    If I want to fight for a diagnosis, how do I go about it??? Should I wait until he is a little older and symptoms are more and more obvious?
    husband and I are really not sure what and if we should do some about it...
  2. zaftigmama

    zaftigmama New Member

    I would fight for *some* kind of diagnosis. A diagnosis of sensory processing disorder (SPD) means nothing to a school district; it's not recognized in the DSM and a concrete diagnosis can help you get an IEP. Does your son have an IEP? I can't remember. If he's not really on the spectrum, it'll become apparent over time. Pervasive Developmental Disorder (PDD) or Pervasive Developmental Disorder (PDD)-not otherwise specified is a good place to start.

    Also, not sure how things are in NC, but in mine (NY) there are therapy frequencies mandated by the state (for autism)--doesn't mean that some school districts don't ignore them, but still.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I would simply take him to a neuropsychologist or a different diagnostician. Many don't understand the complexity of Autism Spectrum Disorders (ASD), which does not always manifest with "classical autism" symptoms. Those with higher functioning autism are harder to catch, but they need specific interventions just as much, including speech, even if they can speak well (like my son). Usually they lack the ability to hold a give-and-take conversation or staying on topic or even listening to what others say and things like this can be taught. They also tend to be very literal and unable to really make friends, as they get older, because friendship requires give-and-take and they don't tend to be interested in talking about anything but their

    I say go for a new evaluation and do it by neuropsychologist. They do the best testing 6-10 hours worth. That was when supports for my son FINALLY turned around. Pervasive Developmental Disorder (PDD) really is Austism Spectrum Disorder, and that requires the school district to do something to accommodate (although they often want to get out of it and try!)

    Along with Autism Spectrum Disorders (ASD) (part of the package) comes attentional issues, often ADHD-like problems, sensory issues and usually some sort of learning complexities. Moodswings are common because (as was explained to me) kids who are Autism Spectrum Disorders (ASD) can not handle frustration as well as "typical" kids. That's why the first diagnosis is often ADHD/ODD. My son's was.

    We were told our son "could not" be on the spectrum for a variety of bogus reasons from a variety of uninformed professionals. Actually, husband and I could see it, but we heard "he's too friendly" (well, yes, he runs around and other kids follow him), "his eye contact is too good" (it was sometimes; it wasn't a lot of the time), "he can go from one room to another without melting down" (now, THIS is when you know that the professional who is diagnosing your child knows much less than you do, which is incredibly sad. That's why I like Neuropsychs. They understand disorders that are both psychiatric and neurological rather than one or the other. And they bother to TEST.
    Last edited: Jan 16, 2012
  4. buddy

    buddy New Member

    I think that this is one that is hard for them to SEE. You need to provide them with examples of it like you have done with us here. You know when you say that he can't greet people.... in PART he is not responding to their looking at him and the cues we use to meet people. If he does not realize when someone is shocked and then comfort them, or if he does something and you give a "look" but he really doesn't stop or gets louder or just looks confused...

    Sometimes it is not that they DONT get it but that it is inconsistent or misinterpreted. My son notices non verbals much of the time but really misunderstands.

    Non verbals include tone of voice, body position, routine signals like reaching out for a handshake or wiggling your butt on a bench for people to move on (to adults you may just stand to show that everyone needs to move down a chair) or the lunch room examples we discussed long ago... A kid will walk around looking for a place to sit and just the glances up by kids at tables show whether or not a kid is welcome to sit.

    If he was being inappropriate in a store and someone gave him a look would he look to you for guidance or respond in any appropriate way? How is he with Sweet Pea if she is sad, angry etc... does he just follow your cue or will he on his own try to comfort?

    And when they do notice non verbals, do they respond correctly??? The point of a non verbal is communication and it really is most of our communication so it could be that you naturally... as we all do for our little ones especially, interpret his world for him. That makes it really hard to catch this when they are on the milder end of the spectrum.

    From your past posts, I do not think he does NOT have problems in this area, just that it is not the all or nothing kind of symptom. Just my thought about it... do you think that could be it??
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Buddy, you are so awesome :) :)
  6. JJJ

    JJJ Active Member

    I would keep documenting and softly fighting. I was told (by the school and the psychiatrists) that no way were Eeyore and Tigger autistic. Because they were both verbal and seemed to be able to communicate, it took until each of them turned 9 before I was able to get a real diagnosis of Autism (Tigger) and Pervasive Developmental Disorder (PDD) (Eeyore) and now the school provides services for both of them under the Autism eligibility.

    Higher functioning kids tend to have a longer road to the diagnosis.
  7. Ktllc

    Ktllc New Member

    I just talked to husband about the non verbal communication. He was giving me an example:
    They are fixing the truck together, husband is under the motor and ash V to "pick up the wrench" which was right in front of him. husband is pointing at the wrench while he is asking him for it. V looked completly lost and puzzled, so husband keeps on pointing at it while saying "right in front of you". V turn around, looks up and down and just has no clue. husband then goes "look in front of you, now get on your knees, now extent your arm, see that tool? Yes, pick it up and give it to me". And events like those happen ALL the time. husband and I usually lose our patience over it as well :(... It seems so obvious to us, but V is simply lost.
    I also often say that V don't get it unless I yell on top of my lungs. If I get annoyed by something and just give him a gesture to step back or lift one finger as in "just a minute", even if I say something along with the gesture. V won't get it until my tone gets real angry and loud and be VERY clear about what I want or don't want.
    Those communication issues happen all the time.
    As far comforting his sister, sometimes he will worry about her and try to help her. Some other times he will simply stare blankly and all I want to say is "Duh! don't just stand there, help her". I don't have a specific example in mind right now though...
    on the other hand, he will smile at me if I smile at him. He will laugh if I make a funny face.
    But if my face is like "whatever", V will stay blank and not get it.
    There is a program call TEACHH which specializes in Autism. The consultation and evaluation is free for NC residents. They have several offices across the Carolinas. Anyone heard of them? Introduction to TEACCH — TEACCH - UNC School of Medicine
    Oh, in a store I usually keep a close eye on him. The only recurring issue is usually him being in the way of someone and not understanding that he needs to move. If I say "v" with a tone that implies he needs to move, he will not respond. I have to be very clear "V, move out of the way. You are blocking the lady".
    Last edited: Jan 16, 2012
  8. InsaneCdn

    InsaneCdn Well-Known Member

    Non-verbal... sometimes, it is a "processing-speed" issue... the kid may in fact be able to process non-verbal signals, but not when they are "out of context" (he's not expecting that one right now, so doesn't get it) or are changing fairly fast (annoyed to frustrated to mad). They can learn, but it does take help.
  9. confuzzled

    confuzzled Member

    here is my opinion...

    at his age, i dont think i'd be pushing for a label--its VERY hard to unring that bell if its wrong.

    i'd treat the symptoms and address the issues, one by one, in a similar fashion to what would be done if it was Pervasive Developmental Disorder (PDD)--meaning, sp for pragmatic language, Occupational Therapist (OT) for sensory issues, and so forth. its much easier to accomplish this when they are younger without a traditional diagnosis. if you think that might be the right diagnosis, i'd find a parent group to joint--they know EVERYTHING and will be a great resource to help guide you in your area.

    as time goes on, theoretically the diagnosis will be clear (i say theoretically, lol).

    but unless the school will not address issues without a label (illegal) there really isnt a good enough reason to do it when things are so murky.

    yet. :)

    just my opinion of course.
  10. InsaneCdn

    InsaneCdn Well-Known Member

    I don't remember... has he had Occupational Therapist (OT) evaluation yet, for sensory and motor skills?
    If not, I'd be looking into that one - the Occupational Therapist (OT) report won't give you a diagnosis, but does provide useful info for you, for the docs, and for school. Try to fill in the gaps in information as much as possible at this point.

    Some places (like, here) Pervasive Developmental Disorder (PDD)-not otherwise specified doesn't get you ANYTHING for services - in which case, there is no point having the diagnosis right now.
  11. buddy

    buddy New Member

    Well, you have given LOTs of examples of tone, body language etc. Also have given lots of examples of his probably not processing well. May be language may be other specific auditory processing issues and likely... it is a COMBINATION of one or several of these issues. Can you imagine this poor kid trying to figure things out??? Holy heck no wonder he gets so upset sometimes.

    There are many wonderful things in TEACCH. I 100% believe that it is important to make sure that you use multiple researched methods that address skill areas and not be stuck into any ONE thing especially if a child does not make progress in one program. SO, just check it out and see if they have Occupational Therapist (OT) and Speech Language Pathologist (SLP) services and how they work on things. See if it matches your gut considering how he learns. You can always try and if it is a good fit that would be wonderful! It sometimes takes specialized autism programs to catch the little more subtle things that the doctors look at as "they have it or they dont" kinds of things.

    OH, and regarding the Pervasive Developmental Disorder (PDD)-not otherwise specified issue... just from what you are saying, I would not think he would get that, he actually sounds fully on the Pervasive Developmental Disorder (PDD) spectrum. In the US there is a medical diagnosis and an educational diagnosis and until the DSM changes they look different on paper. A child does NOT need a medical diagnosis to get the Autism Spectrum Disorders (ASD) label in the schools. They do not need an Autism Spectrum Disorders (ASD) diagnosis to get a Pervasive Developmental Disorder (PDD) (autism, aspergers, etc...) diagnosis in the medical community. If testing in the medical community is done, then the schools can use that to fulfill criteria by saying they scored in the Pervasive Developmental Disorder (PDD) range/autism range etc.. but in the schools they would still no matter the specific medical label will only get put under the Autism Spectrum Disorders (ASD) federal educational category. (people may say in the schools that this kid has aspergers, autism etc.. but on the formal IEP it will say they are educated in the Autism Spectrum Disorders (ASD) category). SO, Pervasive Developmental Disorder (PDD)-not otherwise specified can lend support (though the rest of the criteria has to be met) to qualifying for Autism Spectrum Disorders (ASD) in the schools but it may not get him therapy privately because it all depends on your insurance etc.

    I had Q stay under the general daughter (developmental delay) category in early childhood. That must change when they hit elementary school but it bought us time to investigate things and make sure.
  12. TeDo

    TeDo Guest

    Should you fight for a diagnosis? My personal feeling is....does he have an IEP? Does the IEP give him all the supports he needs? Will the diagnosis get him any more supports? Is he getting into trouble at school for his "autistic-like" behavior that he can't help? If he doesn't have an IEP or doesn't have the appopriate accommodations or is getting into trouble for his behavior, then yes, push for a diagnosis. That TEACCH place sounds great. If the evaluation is free, go for it. THEY know what they're looking for.
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Buddy, you know how much I respect you, but that is not true, at least in Wisconsin. As soon as my son got a Pervasive Developmental Disorder (PDD)/autism diagnosis from the neuropsychologist, the school's attitude changed (it had to) and they not only accepted it, they really helped my son on a new level. The diagnosis is important in the US for getting supports, and every state is different. He is under "autism" but is mostly mainstreamed because he can function well in a regular setting. However, when he was younger, he could not. The help he got was invaluable!
    It is not hard to have a label changed if the label is wrong. My son was diagnosed bipolar for three years. After he was diagnosed with Autism Spectrum Disorders (ASD), nobody mentioned bipolar again. It was clear it was a wrong diagnosis. Nobody is labeled for life. That is false information. Once a child is an adult, if he still needs services, he has to take a completely new evaluation to see if he qualifies for help or social security and they DO NOT take any earlier diagnosis. into account. I know this because we just did this and SS didn't even want to read his childhood history. They are only interested in how the person is functioning CURRENTLY.
    So I have dealth with adult services and social security quite recently and, trust me, your childhood labels are shed as an adult. There is no secret info bank that says, "Sonic was dignosed with ADHD/ODD, then bipolar, then autism." It is all about HERE and NOW.
    I would not let it worry you that a diagnosis is permanent label. Even adults can have label changes. Can't tell you how many I've had, as psychiatry has progressed through the years and learned more.
  14. Ktllc

    Ktllc New Member

    V does NOT have an IEP.
    My school district does NOT seem very good with special need kids, even when the behavior is obvious and disrupting (which is not the case for V, but it is the case for one of my friend's grandson). Their favorite motto is "let's wait and see".
    I can see already that V will need special accomodations if we want him to learn. Otherwise he gets overwhelmed and shuts down or disconnect from the group. The one on one attention is vital for his learning.
    I am honestly worried about what will happen when there are real expectations in Kindergarten.
    I don't believe a diagnosis of anxiety will be much help in school and overall communication.
    His therapist told me last week that my biggest help will be autism ressources. She actually is the one that suggested TEACHH.
    V had his first Occupational Therapist (OT) session with the new therapist last week. He was perfect and no difficulties. She even said "no way, V is not that safe all the time and does not take directions that well all the time!". She had seen him during our first meeting when he was playing with his brother: jumping all over, refusing any input from his brother, etc... Occupational Therapist (OT) actually wants to "use" Partner during therapy in order to reveal V's difficulties.At least, SHE saw V's 2 sides.
    Maybe I should call teachh and explain why I think Pervasive Developmental Disorder (PDD) is the right diagnosis? It just sounds so arrogant to say that when I am obviously no expert in the matter...
  15. DammitJanet

    DammitJanet Well-Known Member Staff Member

    NC is renowned for its autism programs. I am not sure where you are but TEACCH has one place in Fayetteville. I assume others are probably in the Triangle area and probably in the Piedmont and Charlotte area. I also know that UNC has done some major work in this area along with Duke I believe, but I believe UNC is in the lead.

    I do think you will find getting an IEP easier once V is in actual elementary school if he actually has issues. If he is in the More at four program or the Pre-K program in the public school, they already consider those kids to be under a form of IEP already. Its a very loose IEP for sure but thats what they call it.
  16. TerryJ2

    TerryJ2 Well-Known Member

    good example, working under the hood of the car.
    (Reminds me of a cute story about my son, bit of a tangent here ... a friend came over to help me fix his bike, and she told him not to touch the tools, especially the Allen Wrench. Later, she asked him to repeat what she said, and he said, "I'm not supposed to touch anything because that's Allen's wrench." lol!)

    Now, why is that the professionals tell me V is not on the spectrum because he understands non verbal communication??

    Which professionals? Most of them want to go by the book. It's easier. And frankly, a lot don't have experience with-spectrum disorders. They just go for the obvious. "Spectrum" is the operative word. Sad but true. Considering how may professionals miss dxes in the hospital when people are bleeding through the nose, it makes sense to me that they would miss something far more subtle.
  17. buddy

    buddy New Member

    I agree with you. I did not say it did not matter. I said it is not needed! How much it is considered is really up to the people doing the assessment and in your case it helped. (and it SHOULD help... how stupid would it be to have them ignore it... really, they did for my son too. they took the evaluations and did not re-do the information and his daughter category was easily changed to Autism Spectrum Disorders (ASD)). In the end, the state criteria must be met and it at a minimum has to be what federal criteria states, and the definitions of Autism Spectrum Disorders (ASD) and the words are a federal mandate. So they can include the full private evaluation... and that includes standardized tests, evaluations, observations, etc. They CAN include medical information. (they SHOULD) but there are many many kids who never ever get a medical diagnosis and STILL get qualified under Autism Spectrum Disorders (ASD). It is a separate thing. Schools can't diagnose medical conditions by federal law. They can't say that a child qualifies under Pervasive Developmental Disorder (PDD) because that is the DSM diagnosis. It is not the federal/state definitions of Autism Spectrum Disorders (ASD) (though they look very similar and they should) and if they are getting federal money they have to use Autism Spectrum Disorders (ASD).

    The same happens in the opposite, and in fact is much more common around here.... the medical community will sometimes poo poo a school Autism Spectrum Disorders (ASD) category. They complain that everyone is falling under that category. They are much more conservative in many cases and sadly that can delay early intervention. You can't get private therapy unless there is a medical diagnosis somewhere on record. You CAN pay privately for social skills classes etc. But insurance is going to want a medical diagnosis.

    Does that make more sense?
  18. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Buddy, that is when OHI is your!!! That was what Sonic was classified as before his autistic spectrum diagnosis :) You sure know a lot. I'm glad you are here. I think I speak for everybody.
  19. susiestar

    susiestar Roll With It

    This teacch program can probably help you get the right evaluations. I would NOT wait and would push HARD to get the label. with-o the label, doors are closed. Period. That label is the key. Most diagnosis's change as the kid grows and shows new problems. That is NORMAL because the new symptoms are new info and were not used to make the prior diagnosis. I would ask the teacch program for names of developmental pediatricians and neuropsychs (not all neurospsychs here will see a 4yo, but dev peds have extra training in psychiatry and in developmental disorders including autism so they are often very helpful unless they are stuck in some old definition of autism). If you don't have a private Occupational Therapist (OT) evaluation, push for that too. sensory issues can be helped easier when they are younger, as they get older it becomes more of a challenge, or so we were told. I think EVERY child would benefit from sensory therapy, but kids with autism disorders seem to have some of the worst sensory issues from what the neuropsychs and dev peds have told us.

    As for the IEP, go Occupational Therapist (OT) the sp ed archives and find the form for the letter to ask for evaluation. Follow the directions for mailing. IT MUST be sent certified mail return receipt requested and NOT done as a verbal request, as a letter you handed them, etc... because you NEED that receipt to put the timeline into place. It is a FEDERAL timeline and is CALENDAR days not school days (common school district trick - they didn't lke it when I laughed at them for that one but it was stupidly funny - I had researched every different thing Wiz struggled with, did they honestly think I hadn't researched this process too? Seriously???) and the state may shorten the timeline but they cannot make it longer.

    By waiting and seeing, you are losing precious time as his brain develops. THAT is what "wait and see" accomplishes, well and it saves the district $$ because they are not providing services that week. But it also costs $$ because the problems are getting more entrenched and it will take more therapy to change it in the future. Plus if his needs are not met, the risk that he will be involved in the justice system go up and that costs the state even more $$. We don't want to think about that, but that IS a possibility for people who don't get the help they need and cannot function in society. It is an EXPENSIVE option but schools are fine with it because their budget doesn't depend on the state Department of Juvenile Justice budget except for when they have to provide school for kids in custody. I AM NOT SAYING THAT V WILL END UP IN JAIL IN ANY WAY. It is just where SOME kids end up if they don't get help when they are kids. It is a fact that makes me want to shake people who work to not provide help or use the IEP accommodations set up for a student.
  20. buddy

    buddy New Member

    you are sweet, I did not say that to show what I know and I only know any of it anyway because I am old. I have been part of this since long before Q but it sure didn't have the in depth interest or meaning until I lived it, bet all here can understand that. Especially all of us who have worked in the schools. You are sure right about OHI and before that when they are little daughter can be used. Once I got the Autism Spectrum Disorders (ASD) diagnosis though I was grateful and have still made that be his primary category because the teaching methods and materials are so much more specific to his learning style. In more general Developmental Coordination Disorder (DCD) classes, they have to be more generalized in their approaches. So, though he also is OHI (for the acquired brain injury and seizure disorder) and he has speech and language as a separate secondary category (it can be a stand alone or a related service, for him it is a stand alone secondary disability category)... I keep him in the Autism Spectrum Disorders (ASD) primary category.

    Anyway in this case, I was just responding to that a push for Pervasive Developmental Disorder (PDD) or Pervasive Developmental Disorder (PDD) /not otherwise specified would really just provide the district with information they can use in their own assessment and hope that they would use it. They DO know it gives us amo to fight them if they dont provide services! Plus, heck, if I didn't have to redo testing I always loved that, smile.