A few questions re: changing a Pervasive Developmental Disorder (PDD) diagnosis

Discussion in 'General Parenting' started by hexemaus2, Sep 12, 2008.

  1. hexemaus2

    hexemaus2 Old hand

    I have a question for some of the "older" parents on the board. Has anyone else had a Pervasive Developmental Disorder (PDD) diagnosis (or similar diagnosis on the spectrum) changed as their child got into their teens?

    I've had several docs recently discuss the idea of changing difficult child 2's Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis. They say they don't see enough symptoms. However, I've had other docs say the opposite - the difficult child 2's issues are very much a part of his Pervasive Developmental Disorder (PDD). I've also had some suggest dropping it to a secondary diagnosis so that he could get services through mental health that he otherwise couldn't get because of the developmental disability.

    For example, I've had docs comment that he doesn't have issues making eye contact. In all honesty, he doesn't. At least not any more. We've worked for years to get him to make eye contact with people. I still have to remind him to look at the person who is talking to him, but he's much better than when he was younger. He'll look at people he knows while he's talking to them...but very seldom will he look at strangers when they speak to him without someone reminding him to look at who is speaking to him.

    His social skills are still non-existant. We've made a few improvements like getting him to understand the concept of personal space, although he still struggles with actually respecting another person's space. He seldom keeps friends because "normal" kids get creeped out by him at times. When I watch him with kids his own age, I can see there are HUGE differences in his maturity level vs. other kids. (His maturity level is more along the lines of a 7 or 8 year old's.) That's usually what creeps the other kids out - he's like having someone's little brother pestering them all the time about video games, his favorite anime series, etc. (With no clue whatsoever that the person he's talking to isn't interested.) He can't read things like facial expressions or tone of voice - he just mimicks others.

    His language skills are still way, way behind. He comprehends just fine. The problem is that he thinks in pictures. He has trouble converting instructions or conversations into pictures that make sense to him. He has even more trouble taking the pictures he sees and converting them into words (either verbal or written) that someone else can understand.

    He still has issues with where his is in time/space. Losing his balance just standing still. Getting irritated with certain fabrics, clothing styles, etc. He doesn't freak over loud noises or bright lights like he used to, but you can tell he's uneasy in large crowds/loud places & he doesn't like going outside unless he's given no other choice.

    He still stims - something we've never been able to correct no matter how much therapy he's had. Granted, we've gotten him to make better choices when he stims (tapping his head into a pillow, as opposed to the wall) but he still stims no matter what.

    Personally, I still see alot of the Pervasive Developmental Disorder (PDD)-type behaviors that originally got us to a spectrum diagnosis. It worries me that so many doctors have mentioned what they don't see and that maybe he should be re-evaluated. There's a part of me that would love to have Pervasive Developmental Disorder (PDD) taken off the table. However, I know in my heart that we'd be doing difficult child a disservice that way. Seeing the symptoms or not, it is the ONLY diagnosis we've had in the last 10 years that made even the slightest bit of sense. (And the only treatment plans that have had a lasting effect on him.)

    Has anyone else had similar suggestions made to them with regard to a difficult child diagnosed on the spectrum? Is it "normal" that as they progress the docs want to reconsider whether or not the original spectrum diagnosis was correct? Could they maybe have misdxed him with Pervasive Developmental Disorder (PDD)? If it's not Pervasive Developmental Disorder (PDD), then why does he have so many of the symptoms?

    Ugh. I hate when the docs do this...make me doubt if we're on the right track or not. I don't really care what they call his issues. I don't really care what the label is...but there's a big difference between a developmental disability and mental health issues in terms of treatment plans, options for services, etc. Especially when many of the services he needs are only available through state resources - they make very clear distinctions between a developmental disability and mental health dxes. They are handled by completely separate entities within the local Community Mental Health agencies. So this could potentially be a big issue if they take Pervasive Developmental Disorder (PDD) off the table.

    In my humble thinking...if all the therapies and treatments we've tried/used over the years do what they're supposed to do, obviously his Pervasive Developmental Disorder (PDD) issues would become less and less obvious. Isn't that the point of treatment? That doesn't mean he's cured or he was misdiagnosed. It simply means that his treatments have been successful to some extent or another. But there are still issues left to be addressed, so changing his diagnosis to something that doesn't put him on the spectrum just doesn't seem to me to be the smart move.

    Maybe I'm just worrying over nothing...but with the court ordered psychiatric evaluation coming up, it does cause me some concern. I worry that if they don't "see" enough of the Pervasive Developmental Disorder (PDD) criteria & take that off the table, he won't be eligible for the services he still needs in order to make progress towards becoming independent. I'm worried that the issues he still has will go untreated and his progress in that regard will stop. From there on out, the docs are just going to focus on his mental health issues...which in my opinion are secondary.

    Like I said, maybe I'm just worrying over nothing. It just seems strange that so many docs are suggesting taking Pervasive Developmental Disorder (PDD) off the table when I know in my heart we shouldn't. Not just yet, anyway. He still has too many cognitive issues that need to be addressed before I would feel comfortable disregarding or removing Pervasive Developmental Disorder (PDD) as a consideration, if that makes sense.
     
  2. trinityroyal

    trinityroyal Well-Known Member

    Hello Hex,

    I think that what the docs are seeing are the gradual signs of maturity. Over time, people on the Autism Spectrum Disorders (ASD) spectrum learn how to adapt behaviour to make it seem more "normal". The underlying issues are all still there, but they're not quite as obvious as they are when the child is younger and less able to maintain.

    As his mom, you're seeing ALL of difficult child 2's behaviour. You also have close familiarity with his stims and other behaviour, so you recognize them as stims whereas the doctor is probably looking for something more obvious.

    Can you document the way in which your difficult child typically manifests Pervasive Developmental Disorder (PDD) behaviour? If the evaluators have some idea of what they're looking at? That when your difficult child flaps or rocks it looks like Y rather than X? I don't think you're worrying over nothing, and it is strange to have that diagnosis off the table.

    Do these doctors have specific expertise in Autism Spectrum Disorders (ASD) spectrum disorders? Are any of them NeuroPsychologists? I've found over the years that people's expertise seems to lead them in a particular diagnostic direction, and if these docs don't have enough experience with Pervasive Developmental Disorder (PDD) to know what they're seeing, then they may very well end up taking you down the wrong path.

    If your mommy gut is telling you that Pervasive Developmental Disorder (PDD) issues still need to be addressed, then fight as hard as you can to leave them on the table. I think you're right that if the cognitive and neuro issues don't get addressed, it will be hard to make progress in the other areas.

    Trinity
     
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Frankly, my son has social skills now and he's on the spectrum. Who is telling you he's not? Is it somebody very knowledgeable about Autism Spectrum Disorders (ASD)? If it's not, frankly, I wouldn't believe him. Can you find somebody who understands Pervasive Developmental Disorder (PDD)? It doesn't go away and social skills issues are a huge problem with Pervasive Developmental Disorder (PDD) teens and adults, and they don't learn social skills by talk therapy in a conventional way. JMO, but I'd find somebody else who will continue to help your child improve. It's insane to say he no longer has Pervasive Developmental Disorder (PDD) just because he has learned to do eye contact. Some Pervasive Developmental Disorder (PDD) kids do learn it. Pervasive Developmental Disorder (PDD) kids *do* improve (see my post), but they still have Pervasive Developmental Disorder (PDD). OFten Pervasive Developmental Disorder (PDD) gets mistaken for things that just aren't there, such as bipolar, and the kids end up on a slew of medications because the therapists don't understand that they are neurologically impaired, not mentally ill. Your kiddo has been hospitalized a lot. Are you sure they are focusing on the right things? Are the medications making him better? This is your call, but I'd go elsewhere. Good luck :)
     
  4. Marguerite

    Marguerite Active Member

    I am a firm believer that "losing the diagnosis" is selling the kids short. As part of the diagnostic criteria include the child's history, and THAT doesn't change, then I do not see how anyone can justify losing the diagnosis. It smacks of seeing the diagnosis as a stigma, instead of simply an explanation and a deeper understanding of what the child has been through and worked with.

    To live with Pervasive Developmental Disorder (PDD) in any form - it's not all bad, it's not all disadvantage. They have gifts too. To deny this, to pretend it doesn't exist - I don't think that is fair to the child. And I really worry about the medical opinion of anyone who DOES see it as a problem.

    If a diagnosis is lost because another diagnosis is found that is a better fit -then that is different. But you do need to be careful that the history is not discounted or ignored.

    Marg
     
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Marg always gives me such good ideas...lol. (I love ya, Marg). She's right. Pervasive Developmental Disorder (PDD) is a "difference" and it's NOT all bad. My son is unique but not unhappy with who he is.
    Psychiatrists and regular therapists have a tendency to want to change Pervasive Developmental Disorder (PDD) into mental illness--it is what they know. I am in a parent group for kids who are on the spectrum. There are 150 parents and kids. Many times Psychiatrists tried to "change" the Pervasive Developmental Disorder (PDD) into a mood disorder or ADHD and shove medications at them, especially when the kids were making the normal progress and no longer "look" autistic (they've learned how to act typical) and because THEY didn't know that much about high functioning Pervasive Developmental Disorder (PDD). The obvious symptoms do tend to go away when the PDDer learns how to adapt. That doesn't mean it's gone--it is never gone. They just learned how to deal with it. I shudder when I think of all the wrong diagnosis. and medications my son was on because his psychiatrist, who has a big name here, didn't know squat about Autism Spectrum Disorders (ASD) and insisted he was bipolar (although he didn't rage). I would find somebody who understands the Spectrum. Clearly, this professional does not. Aspergers and Pervasive Developmental Disorder (PDD)-not otherwise specified have only been identified within the past ten years, and a lot of psychiatrists don't know anything about or are just plain more comfortable calling it mental illness and pushing medications. Before it was identified, these poor kids were treated as if they had ADHD, were mentally slow, or had a number of mental illnesses. I wouldn't let this professional throw you--I'd just make sure I found somebody who is very familiar with Pervasive Developmental Disorder (PDD). NeuroPsychs are good sources. You MUST include the history to get a correct diagnosis. Likely, your child is still developing very slowly, and it sounds like he needs help in social skills--this is the norm for these kids. Knowing what I know now, I wouldn't get sidetracked. For all your know, he throws fits because he is frustrated or not understood because of Pervasive Developmental Disorder (PDD), and he may not have a mood disorder or ODD at all. We found a compliant, sweet boy under his Pervasive Developmental Disorder (PDD). We never would have found it if we hadn't explored enough to find the real source of his unhappiness, and helped him with tons of interventions. Good luck!
     
  6. hexemaus2

    hexemaus2 Old hand

    Thanks so much guys. You guys have help to strengthen my resolve. I didn't think changing a Pervasive Developmental Disorder (PDD) diagnosis was "normal."

    This is the #1 reason why we're going back to difficult child 2's previous psychiatrist. We moved from her practice (on her advice) to our Community Mental Health folks because they have a division that is supposed to offer support/services for Autism Spectrum Disorders (ASD) kids - supposedly more services than she could get for difficult child in the private sector. Well, those services never materialized. The "professionals" - his cognitive therapist, the folks handling our IFI services, etc. all have said they don't "see" enough Pervasive Developmental Disorder (PDD) behaviors to warrant that diagnosis. But when I asked them what they were looking for - they said things like making eye contact (specifically the lack of it) and other symptoms that in my opinion, are very typical of younger kids on the spectrum who haven't had any interventions. I don't think they know what to look for in an older child who has started to learn how to adapt.

    So, we're going back to his previous psychiatrist. Personally? I think it would be better to have less services so long as the services he gets are what he needs. Having alot of services doesn't matter if they aren't what he needs. And to be honest? I don't think his cognitive therapist was anything more than a "regular" therapist who has been assigned to work with kids needing help with cognitive functions. I don't think he had any specialized training or experience. Even difficult child 2 has asked more than once what was supposed to be so different about this therapist - he was just doing the same ol' same ol' that other "talk" therapists have done in the past.

    At least our old psychiatrist and I were on the same page. She's not a really friendly kind of person, but her focus is definitely more on getting difficult child 2 what he needs. We both agree that a good 80% of difficult child 2's outbursts are stemming from frustrations with his own language issues and the understandable anxiety of not understanding the world around him. We can use medications to help make those symptoms manageable, but until we address the root causes, he's going to keep having issues with outbursts - no matter what medications we use.

    Something interesting the psychiatrist at court brought up was Intermittent Explosive Disorder - which is a diagnosis difficult child has had before. He explained that one of the hallmarks of Intermittent Explosive Disorder (IED) is the inability to remember what happened during a rage. He explained that it's actually caused by electrically-based seizures in the frontal lobe & that an EEG would help to determine if that's what's going on. He said that it's not uncommon in high functioning kids to also have issues with Intermittent Explosive Disorder (IED) to varying degrees. He seemed rather shocked that no one had done an EEG on difficult child 2 in all these years, with all of these hospitalizations. I felt MUCH more confident in his knowledge of what he was talking about and I only talked to this man for 30 minutes!!! He explained some of the more technical aspects of Autism Spectrum Disorders (ASD) & how the brain works and why he felt...just from talking to difficult child for a few minutes and reading some of his past medical summaries...that we should really pursue having an EEG done. We might be able to find the missing piece of the puzzle with difficult child & his rages. (Even difficult child 2's old psychiatrist knows there's more going on with difficult child than just Pervasive Developmental Disorder (PDD) - it's just a matter of what that actually is.)

    I truly think difficult child 2 doesn't need LESS in terms of treatment for his Pervasive Developmental Disorder (PDD). I think we need to move the focus off mental health and focus MORE on his Pervasive Developmental Disorder (PDD). It's the only area/avenues of treatment that have really had any kind of lasting effect or made a difference for him. That alone should speak to the validity of his Pervasive Developmental Disorder (PDD) diagnosis.

    My biggest concern is that when we go for this court-ordered psychiatric evaluation, we'll wind up with someone in the "let's go with mental health diagnosis instead of Pervasive Developmental Disorder (PDD)" camp. Then we're going to have to fight an uphill battle even more because there will be "documentation" that disputes that diagnosis. We have to fight for services as it is, I sure don't want some piece of paper that adds to that struggle. Given how many tdocs this boy has had in the last year that have voiced what they "don't" see...I'm really concerned about this evaluation.

    I'm seriously considering calling the judge's office on Monday and asking for a neuropsychologist to be used for the evaluation - someone who knows about/has experience with Autism Spectrum Disorders (ASD). If there is a legit reason to take Pervasive Developmental Disorder (PDD) off the table, then fine. But I want to hear that from someone who knows what the heck they're talking about. Not just some run-of-the-mill therapist who's only real experience is with MH dxes.

    Thanks again guys, for helping me to straighten out my own focus and resolve. It's good to know that what my gut's telling me is once again on the right track. Like I said, I didn't think changing an Autism Spectrum Disorders (ASD) diagnosis was "normal." That helps me figure out where I need to push and where I don't.
     
  7. susiestar

    susiestar Roll With It

    I think you have made some sound choices. I odn't know if your phone call to the judge will have them be able to find a therapist who is truly trained/educated in Autism Spectrum Disorders (ASD) to do your difficult child 2's evaluation. I think we are seeing (across the board) more of every kind of doctor who SAY they are educated on Autism Spectrum Disorders (ASD) but truly are NOT, or only have a weekend seminar in Autism Spectrum Disorders (ASD) but add it to their list of qualifications so that they appeal to a broader range of patients. I know that we ahve been caught off guard by a few "experts" who have read almost nothing on Autism Spectrum Disorders (ASD) and have very little training, but because they ahve had ONE weekend of training are billing themselves as "qualified".

    As MWM said, this is not one of the older, more established disorders. It is relatively new, as far as mental disorders being diagnosis'ed today go, and therefore we are seeing more people claiming to be knowledgeable than are truly knowledgeable.

    Taking Pervasive Developmental Disorder (PDD) off of your child's list of diagnosis will NOT open up new therapy or treatment options, it will close them. It will mean your child is LESS able to get help.. Partly because no one will know what is wrong and partly because there ahs been a HUGE push to provide funds for those with Autism Spectrum Disorders (ASD) and if that isn't on his diagnosis list, he isn't eligible for many things. Look at all the grief Shari has had getting her weegfg into a social skills class. The head honcho at hte devel pediatrician says her weegfg hasn't got Autism Spectrum Disorders (ASD), even though the other docs say he does. So her son ca't attend these much needed social skills sessions.

    Keep a list of the various Pervasive Developmental Disorder (PDD) traits, the aspergers traits, the plain autistic traits, and list each day all of the traits you have seen. THIS will help if you have to go up against any of the docs who want to take Pervasive Developmental Disorder (PDD) off of your son's list of descriptors.

    Be SURE that school doesn't get wind of taking this off his list. THEY are getting HUGE sums from various groups for identifying and providing resources for kids with Pervasive Developmental Disorder (PDD) and other Autism Spectrum Disorders (ASD) related problems.
     
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Good post from both of you! Pervasive Developmental Disorder (PDD) kids have sadly been diagnosed everything from ADHD to bipolar to Conduct Disorder!!! Don't let them take Pervasive Developmental Disorder (PDD) off as the major problem. Bring them information if you have to. Find your own autism advocate. I would definitely ask if you can get a neuropsychologist in there. To treat a Pervasive Developmental Disorder (PDD) child as if he is mentally ill is a grave disservice to the chlid--and it won't help him. (((Hugs)))
     
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