Pervasive Developmental Disorder (PDD) kids...moving up the spectrum?

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

  1. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    There is a center for Pervasive Developmental Disorder (PDD) kids close enough that I can take my son and they have social skills classes for Autism Spectrum Disorders (ASD) teenagers. I took my son for an intake interview on Tuesday and had an interesting meeting with the psychologist (who only deals with Autism Spectrum Disorders (ASD) kids), my son and myself. A colleague of his had diagnosed my son with Pervasive Developmental Disorder (PDD)-not otherwise specified. I loved this neuropsychologist, but unfortunately he died a few years ago. His colleague had all my son's records and knew them by heart. After he was finished talking to my son, he sent him out in the reception area and spoke to me. He said that he seemed more Aspergers than anything. I brought up his early development and how severe he had been. He said that you can move up the Spectrum, that professionals were still learing about Pervasive Developmental Disorder (PDD)-not otherwise specified and Aspergers because it is so new, but that you can climb the ladder and that my son obviously had. He is going to work with us to try to help us and my son plan his adult life. He said that son will likely be able to be independent, and I've been thinking that myself the past year...he's so improved.
    I really liked this man. He explained "autistic traits" to my son but also told him that there was nothing "freakish" or "weird" about him (when son asked about it) and that he just needed to learn how to deal with his "sensitivities." His approach really had my son's attention and I feel very good about this man. He is only a PhD psychologist, but he works with Autism Spectrum Disorders (ASD) kids every day, ad nauseum.
    I never thought about my son moving up the spectrum. How do you feel about that? I actually think it can happen and has happened to my son. The doctor said that on "a scale of 1-10 for autism, he'd be about a 2." I actually think he's more a 3 or 4, but he started out an 8...lol. The Psychologist talked to my son about how he obsesses a lot and has trouble paying attention and asked if he wanted to try medication to make it easier for him to concentrate (I like how he ASKED my son). My son said no, he did not want to take anymore medication. He will deal with it on his own. Since my son is usually so quiet, I was surprised he voiced such a strong, mature opinion. He sounded like a sane, mature, rational young man...color me shocked.
    Interventions are soooooooooooooooo terrific. I credit them, plus my son's incredibly hard work, for his improvement.
     
  2. babybear

    babybear New Member

    I absolutely agree. I see the same with my difficult child. She will always be on the spectrum, but how much it interferes with the life she wants to lead is up to us and what we do now. That is why early interventions are so important.

    Sounds like you have an awesome counselor! and an awesome son too! ;)
     
  3. Christy

    Christy New Member

    That is great to hear. :) It sounds like everyones hard work is paying off. It is exciting to think that he may have more options available to him in the future due to this improvement. I am curious, what do you envison his life like as an adult?
     
  4. crazymama30

    crazymama30 Active Member

    midwestmom, I think many things come in degrees, so why not autism too? I think it makes a lot of sense that it changes, because maturity alone could change things as could the proper interventions. I am glad he is improving, and glad he got a chance to participate. I recently had my son participate in an IEP meeting, and I think it was a very positive thing for him. Kids deserve to have a say in their treatment, as long as they are able to do so in a positive manner. I can see how for some it would not work.
     
  5. Marguerite

    Marguerite Active Member

    The guy sounds brilliant. Very helpful.

    I agree about the diagnosis being permanent, but yes, our kids can improve. At least they can apparently improve. I put it down to adaptation and increasing confidence. difficult child 3 calls it "pretending to be normal". I've used the analogy of a swan gliding on the lake - it looks so serene that few people ever realise tat to maintain that semblance of serenity there is a lot of furious activity happening beneath the surface.

    Marg
     
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'm not 100% sure yet of his future. I think he can live alone or with one other person (but it's becoming clearer that he can probably live alone--he takes good care of his room, can cook, understands that you have to go to work, etc.) I'm not sure what kind of job he'll be able to do yet. We're trying to find something he enjoys, maybe computers. Since even two years ago I thought he'd be in assisted living and working at a place for disabled adults, we've come far. I think we probably won't know with him until older--until perhaps he is 25. I hope he can marry...social problems are the biggest problem with kids high up on the spectrum, but some do marry. That's why we are now working on social skills. Son has shown a lot of motivation to make friends and he HAS friends at school. He just needs to learn how to reach out. I feel very hopeful.
     
  7. susiestar

    susiestar Roll With It

    Isn't it AWESOME when you hear/learn things like this????? I am so happy for you I know that Wiz is functioning pretty much like any other teen right now. He has his problems, but they are certainly much less severe than they were just a few years ago. Gpa went to his IEP meeting this week. He has many options, including using the computer to type any/all assignments, asking for extra time on the tests, etc....

    Found out he has kept good grades and not used or needed any of these since the very beginning of last year!!!

    It felt wonderful to hear that, as I am sure it felt wonderful to hear your child has moved up one the spectrum.

    I am glad that the professionals are able to see what we have seen - that you CAN improve if you have any autism related disorder.
     
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    People don't realize that autism is not a "bad" diagnosis anymore. It's one of the disorders that can get much better, especially in this day and age. The improvements in these kids as they get older is unbelievable and rewarding. I would adopt another spectrum child again. I'd adopt ten of them (well, ok, not ten and I'm too old anyway :) ) I just don't want people with Autism Spectrum Disorders (ASD) kids to think it's a death sentence. It's really a very hopeful diagnosis, as they go.
     
  9. trinityroyal

    trinityroyal Well-Known Member

    This psychiatrist does sound wonderful. It's great that he was so familiar with your son's history, and sought your son's input about his own treatment and therapy.

    As for moving up the spectrum, it certainly is possible for people with Autism Spectrum Disorders (ASD) to improve. I think that socialization and functioning can be learned over time, even if they're not innate skills. Like many other things, even if you're not born with the talent, if you practice enough you can gain a pretty good level of function.

    Marg is right, though, that there is a lot going on under the surface that's invisible to the casual observer. And MWM, you're right that autism isn't necessarily a "bad" diagnosis at all.

    I also think that the way in which the world has changed over the last few decades has made it a much friendlier place for people on the Autism Spectrum Disorders (ASD) spectrum. There are lots of jobs out there now that are ideally suited to people on the spectrum. If your son isn't interested directly in computers, you might want to look into related fields such as process engineering and business analysis. These fields are ideally suited to aspies, as they seem to capitalize on strengths. (If you're ever interested in getting more information on the types of jobs in these fields, please feel free to PM me.)

    I'm so glad to hear that your son is doing so well and that you and the psychiatrist have seen such great improvements. Very hopeful.

    Trinity
     
  10. hexemaus2

    hexemaus2 Old hand

    Interesting perspective. I just finished posting, asking for some input from other "older" parents of spectrum kids. We've had several docs suggest recently that my difficult child's spectrum diagnosis may not be correct anymore. I found that a little shocking, as I didn't think they'd ever take his Pervasive Developmental Disorder (PDD) off the table.

    Maybe I'm just looking at things wrong. Maybe my difficult child is progressing "up the ladder" as you suggested.

    I still don't think we should be looking to take his spectrum diagnosis off the table completely, but looking at it as an improvement in his functioning rather than a mis-diagnosis does give me a much better feeling.

    Who knows? Maybe in a few years he'll be able to function to such an extent that no one would know he's on or had ever been on the spectrum. Oh wouldn't that be such a wonderful improvement? :)
     
  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I just answered your post...lol.
    I don't think our k ids leave the spectrum. There's a really good site called "Wrong Planet." I'll give you the link. These are adult Aspies. I just asked them about eye contact and it was fascinating to get answers. Some make GREAT eye contact, but none of them are comfortable doing it. Autism Spectrum Disorders (ASD) is not like a mental illness, which tends to get worse. As Autism Spectrum Disorders (ASD) kids get older,t hey tend to improve, often a lot. That doesn't mean they are "typical." They tend to always struggle inside with certain things. Here's the link:

    http://www.wrongplanet.net/
     
  12. amazeofgrace

    amazeofgrace New Member

    I know my friend's son who has aspergers is very highly funtional, but she reallt advocated him all through the elementary and HS years, he is in college now, and doing really well
     
  13. Marguerite

    Marguerite Active Member

    I think it really is a matter of adaptation. People with Aspie kids have said to us, "If I knew my son would turn out like difficult child 1 I would be very happy indeed and relax a lot more."

    difficult child 1, when they meet him, seems so capable, so confident, so NORMAL. But he is always going to need some level of support and he knows it. For example, today - we were driving easy child to her appointments with bridal shops. She had emailed the details to me but had forgotten to bring her own list with her. So she telephoned our house with difficult child 1 and asked him to find the information from her recent emails.
    I listened to easy child's side of the conversation. "difficult child 1, I emailed the information to Mum, I need to know the second appointment - who it is and what their address is."
    difficult child 1 opened the email but couldn't find the information. easy child said to him, "Scroll down - it was a reply to an earlier message, the information should be there. OK, scroll down again - it is there. Keep looking. Good, you've found it. Please text the details to me mobile phone. Thanks, bro."
    It took a little longer than it should but she knew how to talk him through.

    Later on, girlfriend began to get a headache from the glare (all that bling on the bridal gowns!). She was supposed to be meeting difficult child 1, so she rang him. "Hi, darling. I need you to come and collect me, I've had to take one of my headache pills and I shouldn't drive. But could you please collect some things for me too? And park your gas guzzler at my place, get my keys and drive my car, it uses less fuel. OK? I think you need to make a list. Have you got a pencil and paper? I'll wait..."
    So she gave him a written list, knowing that he wouldn't be able to remember it all verbally. difficult child 1 needed to drive to her house, park his car, go get her car keys, get some more headache tablets from her drawer, open another drawer and get her blue jumper (the one with the writing on it), get a packet of biscuits from the cupboard and her hairbrush, then come meet her at the coffee shop. She knew to make sure he wrote it down.
    But once she had done this, I saw her relax. She knew that with the list, he would do it and get it right. he would be reliable. She could count on him. With all his drawbacks, for all his vagueness, she knows that in him she will have a husband who is loyal, truthful, loving, a supportive team player. And that tonight he will drive the car to get her to her friends' house and then get her home again safely afterwards. She helped him - but he will help her, in his own way. They each know each other and can make it work together.

    difficult child 1's Asperger's is much more obvious to us because we know him.

    difficult child 3 - also making amazing progress. They are amazing people. But underneath it all - we know what is there.

    Neither of our boys sees their autism as a problem or a flaw. For them, it is just another aspect of who they are, like being left-handed or having brown hair.

    Marg
     
  14. ML

    ML Guest

    I think if manster just finds a controlling wife (one who does all the bills, organizational stuff, social directing, cleaning up of messes), he would be just fine lol.

    MWM I'm delighted to hear your son is doing so well. You have been an amazing mom. You're a pretty neat CD pal too :) ML
     
  15. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Wow, thanks!
    I wish I could say I'm an amazing mom, but I'm really not. Autism Spectrum Disorders (ASD) tends to improve if you give your child interventions. My son is a very hard worker. He did this himself. He constantly amazes me.
     
  16. TerryJ2

    TerryJ2 Well-Known Member

    MM, great news! This guy sounds great.
    I agree that aspies can improve over time. I don't know if it's just conditioning, if the brain is actually rewired, or what I suspect part of it is maturty, and the ADHD part slowing down as they get into their 20s, after the hormone rush is over and they can learn consistently) but mostly I think we know so little about Asperger's so I think the jury is still out.
    I will have to discuss this more in-depth with-our child psychologist because he insists difficult child can learn, albeit very slowly. Yah, so? We'll have to agree to disagree. :)
     
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