How do I know?

amy4129

New Member
Thanks guys- I knew you all would point me in the right direction.
Sometimes it feels like a game of pin the tail on the donkey. And we are both the pinner and the donkey all at the same time and blinfolded.
I will read through the websites and do the Pervasive Developmental Disorder (PDD) site assessment tonight, and post more later.
Amy
 

BusynMember

Well-Known Member
Aspergers and, in my opinion, all Autism Spectrum Disorders (ASD) kids are endearing. They think in such a different way, have a strong, inflexible sense of right and wrong, and most have extremely literal, concrete thinking. My son is at the very high end of Pervasive Developmental Disorder (PDD)-not otherwise specified and I"m sure that maybe some NeuroPsychs would diagnose him as Aspergers, BUT he had that speech delay and Aspies don't. In fact, they are often early talkers and very precocious. Many times, they tend to monologue and sound like "Little Professors." I know my little guy does. He can make talking about a videogame sound like he's discussing the Theory of Relativity and tends to use big words like "actually" and "incidentally" that kids don't normally use. He mixes kid slang with adult-speak, and does not really know how to have a give-and-take discussion. He talks at people, not to them and, if they don't discuss his special interests, he gets bored. AS kids tend to have narrow, obsessive interests, such as (depending on the age) dinosaurs or animals of all sorts or, when older, computers is a big one. Many high functioning Aspies who can work in the public sector have jobs in the computer tech field (see Bill Gates). Unfortunately, most are not as successful as Bill. I know a 30 year old Aspie who is obsessive about Christianity and preaches to anyone who will listen. He is brilliant and sweet, but hasn't been able to hold a job, but, then, he never had interventions and was misdiagonsed a gazillon times (ADHD/bipolar/brain damage due to epilepsy). Like my own son, who was misdiagnosed, he was on trillions of medications. Now he is getting some help, but it's hard as an adult. He isn't wanting to accept his diagnosis. At any rate, social inadequacies, and not "getting it" (and if you have a Pervasive Developmental Disorder (PDD) kid, you know exactly what I mean) are two BIG symptoms, along with inability to converse normally (even with good speech) and being extremely black-and-white literal. Pervasive Developmental Disorder (PDD)-not otherwise specified kids are not as literal as Aspies, but my son has made me laugh a few times by being too literal. Once I told him, playfully, I'd have to ground him until he was eighteen and he burst into tears and said, "That's SIX years!!!!" (Grrrrrrrrr) :smile: Pervasive Developmental Disorder (PDD) kids tend to like to memorize things by rote. My son can tell you what date any videogame has ever come out on. And I mean ALL OF THEM. They have great rote memories, but trouble with abstract thinking. Hope this helped at least a little. I'd do the neuropsychologist. Our Psychiatrist told us that my son absolutely couldn't have autism of any sort because he could go from room to room without screaming. Um, can we say "clueless?" He did NOT recommend a neuropsychologist and was convinced my son had bipolar. He was dead wrong. My son has no moodswings and has been off medications now for three years. I thinkt he medications cognitively dulled him because he is now functioning academically at grade level. Some kids need medications!! Just be uber-careful. There are so many "professionals" who don't update their knowledge and Aspergers and Pervasive Developmental Disorder (PDD)-not otherwise specified was just acknowledged within the past ten years.
 

SuzyfromTexas

New Member
Amy,

I'm going through this exact same situation. We completed a neuropsychologist evaluation for my son in January from a psychologist (PhD) who specializes in assessments only.

I indicated that I thought he may have Aspergers and the "tests" came back negative so to speak. He has characteristics of NonVerbal Learning Disorder (NVLD) (non-verbal learning disorder, same as Aspergers as far as I can tell) but doesn't qualify for an actual diagnosis.

This stuff is hard to pinpoint especially if you have a borderline child. I think Alex was tested adequately (8 hours or so and about 15 tests) but I don't know. I received a 15 page report from her that appears thorough.

Here are a few things to look for:

1. Does he understand how inflection changes the emotional meaning of a statement?
2. what's his expressive speech like?
3. Are his fine and gross motor skills developed?
4. Social Interactions - Not necessarily lack of social interaction but difficulty with them.
5. Does he exhibit empathy?
6. Understand jokes appropriate for age?
7. Does he line up toys or play with them in unusual ways?

(From Midwest Mom - I wouldn't try a pediatrician, regular psycologist, or even a Psychiatrist to diagnose Autism Spectrum Disorders (ASD).) Who should we see?

My son has problems with perfectionism and like many on this board fits the inflexible-explosive defintion. He has good eye-contact, is social and has friends, but can try and control play situations (control freak). I originally thought he had ADHD due to his high activity level. He is very verbal but also seems to comprehend what he is reading. Also, as a baby he was obsessed with fans which I know now is a big red flag.

Sometimes I'm more confused if he should be diagnosed with something more than ever....
 

Janna

New Member
MWM, that rote memory is so funny. SO and I were talking about him the other day and how his memory is.

It's true, Dylan remembers things that are so unimportant in the grand scheme, but things that he really SHOULD remember - they go in and out in a New York second.

For example, difficult child 2 let easy child use his GameBoy for 5 minutes on August 5, 2003. Today, Dylan asks to use it, difficult child 2 says no, and Dylan reminds him, date and all, EXACTLY when he used it last.

But then there are things that have to be reminded to him, over and over and over, like going poop. Still, years after the encopresis deal, he needs reminded nightly. But he can remember that I gave him a piece of gum on March 8th 2001 at 7 PM for picking up his toy for me.

Ahh.
 

TerryJ2

Well-Known Member
Wow, lots of similarities to my difficult child. But differences, too. Thank you all for reminding me to take notes...
Suzi, my difficult child has similarites such as taking over with-his friends and being obsessed with-computers.
And he'll remember exact sentences and can repeat things verbatim, but has problems going to the bathroom. Lots of poopy pants, even at age 10.

Good luck Amy! Keep us posted.
 

smallworld

Moderator
Suzy and others struggling with dxes following psychological testing:

Your kids may have been tested adequately, but may not have received an adequate interpretation or explanation of their testing. This happened recently with my daughter (difficult child 2). She had educational testing (WISC-IV and Woodcock-Johnson) because she is applying to private school. Some of her scores fell significantly from previous testing, plus the psychologist who administered the testing noted that difficult child 2 was inattentive. The psychologist was all ready to jump onto the ADD bandwagon, but my daughter's psychiatrist was not satisfied with this explanation and wanted a skilled neuropsychologist to take a look at all my daughter's testing over the years as well as adminster an IVA (computerized test of attention) and projective testing (psychological testing of how a child view his/her world; particularly helpful with children who have mood issues). We don't have the answers yet -- husband and I meet with difficult child 2's psychiatrist and the neuropsychologist in a week -- but we know it ould be ADD, anxiety, depression, cognitive dulling from mediation or something else entirely. The testing was adequate, but the explanation for the results can vary on how far the professionals around you are willing to delve to look for answers. It's really hard to sort some of this stuff out, so I encourage you to keep looking if you're not satisfied.
 

amy4129

New Member
Well I did the child brain and both kids tested mild for Pervasive Developmental Disorder (PDD) but how does that relate to As? I'm confused.....help
Amy
 

amy4129

New Member
Ok, here's the thing I thought they were 2 different diagnosis. I thought one of the main differences was the language skills. Neither boy had language delays, in fact the opposite. Corey's vocabulary is tremendous ie words like echolacation, but has trouble spelling and hearing the difference between down and done???
Amy
 

Janna

New Member
Amy,

The boys could fit some of the Pervasive Developmental Disorder (PDD)-not otherwise specified criteria, minus the speech delay, and still have Pervasive Developmental Disorder (PDD)-not otherwise specified. I do not think every chilc with Pervasive Developmental Disorder (PDD)-not otherwise specified has a speech delay. That is what makes it so confusing, because it's a spectrum and so many kids are so different.

I think, at this point, your best bet is, again, going to be to keep a journal for each boy. I think you should do some more reading on Asbergers and Pervasive Developmental Disorder (PDD). If they both tested mild for Pervasive Developmental Disorder (PDD)-not otherwise specified, I don't think you should discount that only because neither had a speech delay.

The confusing words thing could be something like an Learning Disability (LD), too, and nothing to do with Autism.

Have you looked for a neuropsychologist yet?
 

amy4129

New Member
So far no one even close is taking new pts. and I only found 2 that where close, under 2 hours. I may have to break down and go to childrens hospital...but that is such a cattle call. I really don't want to deal with medication students and residents.
I just don't have the energy they take...I'm going to call Western psychiatric hospital this week and see if I can get some more info/ names.
Amy
 

smallworld

Moderator
Amy, at our Children's Hospital (in Difficult Child) we dealt with medication students and residents only when the kids were inpatient. But every appointment we've had outpatient, we have only met with MD specialists. Is it definitely the way you describe at your Children's Hospital? Can't you just make an appointment with the doctor you want to see? Is there an autism clinic at your Children's Hospital? That might be the way to go . . .
 

needabreak

New Member
amy i see you live in pa.i know it is not close but have you tryed kennedy krieger.even if they have a waiting list i would get on it.they have done wonders for my little angel.even though there still trying to find out what is wrong with my difficult child.i have nothing bad to say about them.i was even on a waiting list but while i waited i still went to other places,got as many oppions as i could get.it was a very long road and hope all the best for you.and prayers. :angel:
 

amy4129

New Member
Janna-
Thanks, fyi 4 hours one way. I'm going to call and see what they know about anything closer. If not, I'll bring sleeping bags and junk food,lol!
But if nothing closer here we will be on the road!!!
Amy
 
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