We go for another round tomorrow

Discussion in 'General Parenting' started by Ktllc, Mar 27, 2012.

  1. Ktllc

    Ktllc New Member

    Got a phone call from the Autism program (through major university research program) and they want to see us tomorrow.
    It is kind of a 3 stage process: first fill out forms and send all previous information, the team reveiews it and determine if they want to persue the case.
    Second, an interview with parent(s) and child which should last about 1.5 hour. Then they decide if they want to go further.
    Third, very complete autism evaluation that last the whole day with the child only. To conclude, they give an Autism Spectrum Disorders (ASD) diagnosis or not.
    V was crying about the long drive (1 hour...) but I'm sure I can relax him with a happy meal! :)
    The Speech Language Pathologist (SLP) also gave me the written report of the evaluation along with his comments about what the standarized test did not tackle. He wrote that V had very little eye contact during the evaluation. Finally someone who "dares" putting it in writing! I have been saying for a while that his eye contact was off. Yes, he can look at you in the eyes, but he cannot sustain it at all. Or he will look at you from the corner of his eye with his head tilted. How many times a day do I say "V look at me and use your words". I do not think it is normal for his age.
    All I can say at that point: the file must have raised enough concerns that they want to see us, even though one of the previous evaluation said that V is not Autism Spectrum Disorders (ASD). They probably would not waist their time and money (the program is free for NC residents) if it did not look like Autism Spectrum Disorders (ASD) to them.
    Maybe, someone is going to see what I see? (To his credit, our Speech Language Pathologist (SLP) sees exactly what I see but does not challenge the psychologist who ruled out Autism Spectrum Disorders (ASD). He says "it sure is all the sysmptoms of Autism Spectrum Disorders (ASD), but since it's been ruled out, what else could it be. Auditory Processing Disorders (APD) is to explore").
    I'll keep you posted. It will be a long day, again (emotionally).
  2. InsaneCdn

    InsaneCdn Well-Known Member

    evaluation! evaluation! evaluation!
    Yes, the "top" clinics pre-screen pretty well.
    And... if it really ISN'T Autism Spectrum Disorders (ASD)? I'm pretty sure they won't just say "nope, not Autism Spectrum Disorders (ASD)". For a minimum, you should either come out with a diagnosis OR a list of "rule outs" to pursue.
  3. Tiapet

    Tiapet Old Hand

    Ktllc, if it's the program I think it is (Five letter word is the name) I'm happy for you! My youngest difficult child was on waiting list for the program but never got called up for it and then we moved. I hope it brings you answers. Best of luck! :)
  4. Malika

    Malika Well-Known Member

    Oh, that's great you have this evaluation, Ktllc. Finally, some definitive answers, perhaps. Keep us posted (I'm sure you will!)
  5. buddy

    buddy New Member

    Make sure you tell them about the looking out of the corner of his eyes thing... that is really common in kids with Autism Spectrum Disorders (ASD). They will recognize it right away.

    Glad you are going to get to do this. Will be nice either way to get their input.
  6. Ktllc

    Ktllc New Member

    We are back. All 3 kids had a happy meal and, for now, all is quite in the house.
    We passed the second round so to speak and V is on the waiting list for further evaluation.
    The Doctor we saw (there were actually 3, but the interview was conducted by one) was very nice, took time to explain the process, what autism is or looks like, etc.
    She had a check list and explained how it relates to the DSM and the new definition to come.
    1. Social 2. Communication 3.Narrow restricted interests/Difficulty with change or transition 4.Cognitive functioning/learning style 5.Sensory difference 6.Motor difference 7.Adaptive functioning
    She also added one category to V's case: variabilty! She said it was very true for most Autism Spectrum Disorders (ASD) person, and V is extremely variable.
    As she conducted her interview, she took note and placed her comments in those 7 categories.
    Except for 4.cognitive functioning, she had notes in each category.
    On paper, V fits the description of Autism Spectrum Disorders (ASD).
    But in real life (as he was playing, and talking) she said he would be an atypical Autism Spectrum Disorders (ASD) kiddo.
    She pointed out all the good things he could do that most Autism Spectrum Disorders (ASD) people can't:
    V laughed when one of the doctors introduced herself as being 2 years old.
    V used hand gesture to go along with his speech (pointing, etc)
    V rephrased in a different way and added gestures when the doctor pretended not to understand.
    She knows the psychologist who ruled out Autism Spectrum Disorders (ASD) for V and she understands where she is coming from. But she can't ignore the fact that he also has lots of characteristics. Specially due to his variabilty, she thinks Autism Spectrum Disorders (ASD) could have been overlooked back in September. She also said that kids evolve, change and the Autism Spectrum Disorders (ASD) signs can become stronger as time goes by.
    So she wants to run the tests, some of which will be the same but a higher level. Previously, V did the ADOS-1. She wants to do the ADOS-3 among other things.
    I'm not sure what the difference is between the 2...
    Her take was that V does not look Autism Spectrum Disorders (ASD) from what she sees today, but she wants to be cautious and investigate further.
    No answers today, but atleast I know we are being cautious. A second opinion will be good. It also validates my feeling that Autism Spectrum Disorders (ASD) might still be a possibility.
    She mentioned their services IF he gets diagnosis. It seems VERY impressive. They come to the home to teach you about your kid's specific form of Autism Spectrum Disorders (ASD). Help you create create tools to make life easier, allow the child to gain more independence. They have classes you can take. They create teaching strategies for the school. They have LOTS to offer.
    Of course, if it is not Autism Spectrum Disorders (ASD). Then we'll have to look somewhere else for help.
    To be continued.
  7. TeDo

    TeDo Guest

    That sounds great. If it's not the "new" definition of Autism Spectrum Disorders (ASD), you might want to consider asking her where it all might fit under the current guidelines. Although it sounds like there still might be a chance given everything you've told us. difficult child 1 does the same things you said V did during her observations and he's still diagnosis'd on the spectrum. The spectrum is HUGE so it's very possible he's on there somewhere but as she said "atypical". That does not mean it isn't.

    Glad you're getting some good results. Way to keep on the right road. You are doing all the right things for V to have a good chance. Way To Go!!
  8. keista

    keista New Member

    YAY! So glad it's working out.

    DD1 also doesn't really seem Autism Spectrum Disorders (ASD) but is Autism Spectrum Disorders (ASD). She doesn't even qualify for Autism Spectrum Disorders (ASD) via the ADOS, but does qualify under the subtests. Go figure???????

    I'm so glad V is getting this detailed evaluation.
  9. buddy

    buddy New Member

    Sounds like they really get it. So funny how we all have "almost" stories. Q tests smack dab on the spectrum on the ADOS and every checklist but still had one place say he didn't seem as disconnected as some kids with Autism Spectrum Disorders (ASD) seem so despite the history, answers on checklists, ADOS, other evaluations that said yes...they said no. Now that same place says he IS Autism Spectrum Disorders (ASD). just gets old listening to people. I wish they could just service the kids if they are struggling.

    Let us know when the next round is coming up!
  10. Ktllc

    Ktllc New Member

    Tell me about it! It's like trying to join an elite club. One needs to pass all kinds of tests before getting the benefits of the memberhip. If one doesn't quite fit, too bad... one needs to keep searching for just the right club.
    And if one does not really fit anything, you're left alone with all the problems and have to organize care, convince people and advocate for your child everytime you turn around! People outside "our" world simply don't understand the importance of the all mighty diagnosis.
  11. InsaneCdn

    InsaneCdn Well-Known Member

    If I remember right, you've been using some signing to communicate, right?
    In that case... the gestures may be related to his training in signing, rather than "spontaneous"...
    Should probably flag them on this bit of info, if it applies.
  12. TerryJ2

    TerryJ2 Well-Known Member

    You're making great progress!

    No two autistic/Aspie kids look or act alike. I soooo wish doctors would get over the textbook definition. Argh.

    Anyway, you ARE making progress. I like that the dr introduced himself as being 2 yrs old. Good way to get a reaction. And good catch on the hand gestures.